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The Miracle of Candice

Posted by Dr. Lachlan Forrow March 24, 2014 05:16 AM
Monday, November 26, 1973 was a miraculous day.  

I first heard about it from Dennis Costa -- it was the first thing he mentioned when I asked him to tell me about his daughter Candice.  He told me, with a hint of tears in his eyes, as we sat together in the ICU conference room last month, that he had known Candice literally from the moment she was born -- he was right there in the delivery room, which he mentioned was a very unusual thing at the time for a father.

Dennis hasn't (yet) told me why he and his wife named their baby girl Candice, but I think the name was perfect.  My dictionary (Google, of course), tells me that the name "Candice" comes from a Greek word that means "sparkling".  Or a Latin word meaning "shining".  

Words evolve, and I learned here a few more things about "Candice": 

People with this name have a deep inner desire for a stable, loving family or community, and a need to work with others and to be appreciated.  

and

People with this name tend to be creative and excellent at expressing themselves. They are drawn to the arts, and often enjoy life immensely. They are often the center of attention, and enjoy careers that put them in the limelight. They tend to become involved in many different activities, and are sometimes reckless with both their energies and with money.

I'm not sure about the "sometimes reckless with...money" part, though I suspect Stephanie may make me laugh with at least one story that somehow fits that, too.  And the Candice I have come to know has never shown any interest in being "in the limelight" -- and the reason that she finds herself there right now would be anyone's "worst nightmare".  Actually, maybe worse than "worst".  

And for sure there is nothing that Candice is "enjoying" about the reason she is currently the "center of attention" for so many people.

I told Candice (her real name, used with her permission) Friday morning that she is one of the most amazing teachers I have ever had.  I enjoyed telling Stephanie, in the hallway a little later since Candice was sleeping, that I had realized that the word "doctor" in Latin meant "teacher", and that seems perfect, too.  In the literal sense, Candice has been at least as much my/our "doctor" as I, and the many other amazing doctors she has, have been for her.

I'm actually going to stop here, except to say that the day I met Candice (and Stephanie, and Dennis, and Candice's aunt, her "second mom") Candice was in our ICU because she had just had several major strokes, which was bewildering at first for a completely healthy 40-year-old woman.  But we quickly found that the reason her blood was clotting so abnormally was the widely-metastatic cancer of the pancreas.

You can learn more -- maybe finding that Candice (and Stephanie) can be your "doctor/teacher" too -- from the website that Stephanie has created: "I Heart Candice".  There you will learn about ways in which Candice's room at BIDMC is filled with more "sparkling" and "shining" love (and laughter, and sadness) than you may be able to imagine.  Don't worry about trying to understand it (I've given up for now), just see it.

The kinds of things you will learn aren't actually learned by reading alone, or even seeing some of the pictures on the website.  You can only experience them by doing things like Candice, Stephanie, family, friends, nurses, doctors, social workers, and others have found themselves doing when trying to help each other.

If you want to try to be part of that kind of learning experience, you can go to the "Lotsa Helping Hands" link on Stephanie/Candice's website.  While Candice (and Stephanie, and Dennis, and the rest of the family) have plenty of "helping hands" already, the link will take you to the Lotsa Helping Hands website, through which you may find ways to lend a helping hand to others.  Or maybe invite others to lend a helping hand to you, if you could use one.  And then maybe "The Miracle of Candice" will turn out to be contagious.  Maybe not even such a "miracle" (in the sense of something that almost never really happens).  Maybe something that happens a lot.

Or maybe as a start for now, if you find yourself as grateful to Candice and Stephanie as I am, just go here and write a few words to let them know.  It would mean a lot to them, I'm sure. 

And, I suspect, to you.

[Addendum: about half an hour after I posted the final version of this, I learned that Candice died at about the same time as my posting, at 6:20am this morning.  But as one of her doctors and one of her nurses agreed, when we were talking about Candice at about 9am, struck by how vividly alive our memories of her are -- her mischievous smiles, her unusual and highly-contagious sense of humor, her courage, her honesty, her generosity, and so much more -- maybe we should be more precise and say "died physically".]

Human Suffering, Health Insurance, and a "Miracle"

Posted by Dr. Lachlan Forrow March 17, 2014 06:10 AM
It is easy these days to be cynical about health insurers. We all know they only care about "the bottom line", which we of course are smart enough to know means "the money".

This issue is complicated (very, very complicated), especially because most private health insurance companies are "for-profit".  What any for-profit company is designed to do is (of course) to make a profit.  Ideally as large as possible.  This is arguably the most fundamental ethical responsibility the company has, since any company is ultimately responsible to its owners and investors (literally, its "stockholders"), and their bottom line is usually the size of the financial return on their investments. (So we should stop blaming leaders of for-profit companies when they do what they are hired to do.)

I have become increasingly convinced, however, that our cynicism is deeply unfair to insurers, and especially to the individual people who work for them.  I may be spoiled, however, by living in Massachusetts, where the leading insurers are all "not-for-profit" (or, more simply, "non-profit") companies, whose purposes are (by definition) different from those of "for-profit" companies.

To explain, I will tell one story about one patient.  The story, like the issues about health insurers generally, is complicated, but I'll stick to the essentials, and then offer three conclusions.

Since the story is about a patient with "Federal Blue Cross" insurance, which I have been told is the best insurance money can buy, before I tell the story let's see what the BC/BS website says they offer to patients.

If you go to the BC/BS of Massachusetts website, you will learn that "At Blue Cross Blue Shield of Massachusetts, we're committed to ensuring that our members get the best care."  It then goes on to define "best care" in just six words -- "best care" is care that is:

Effective
Efficient
Equitable
Patient-Centered
Safe
Timely

And then there is one more phrase, just 7 words:

And delivered in the most appropriate setting.

These words, which most people choosing health insurance probably don't even notice, sometimes turn out to be important.


The story began at ~8:15pm one evening, when I stopped in the room of a patient with advanced cancer, worried about how she and her family were doing.  The most fundamental goal of "palliative care" is to prevent or alleviate suffering of any kind -- physical, emotional, and/or spiritual. Everyone in the room that evening was suffering.  But their suffering was not caused by the cancer (or the massive stroke that had been caused by the cancer).  The cause was a health insurance issue.  

I asked the patient's wife what time she first learned of the issue, and she said it was around 4pm.  I found myself saying something like "I think 24 hours is the longest acceptable time to fix this.  I'm not yet sure how, but that should be our goal."

I honestly didn't know at that point what I was going to try to do, but one of the basic tenets of "palliative care" is that when anyone is in unacceptable pain, reducing the pain to a tolerable level is a "medical emergency".  And 24 hours (or nearly 20 additional hours from the time I learned of the problem) is a very, very long time to suffer when you are in serious pain.

Below I have copied a series of email exchanges that started the next morning.  "Andrew" is Andrew Drefyus, CEO of BC/BS of Massachusetts.  "Eric" is Eric Shultz, CEO of Harvard Pilgrim Health Care. Nancy Turnbull is Senior Lecturer on Health Policy and
Associate Dean for Educational Programs at the Harvard School of Public Health (employer of the patient's wife).  I have their permission to share these emails.  They asked,however, that I make sure that there will be no possible violation of patient privacy, and so I also have the permission of the patient, and the patient's wife. 

The thread begins at 7:16 a.m., leaving only 8 hours, 44 minutes to relieve the suffering within 24h of its onset.


From: Lachlan Forrow, MD
Sent: Thursday, February 27, 2014 7:16 AM
To: Dreyfus, Andrew;Schultz, Eric

Cc: Nancy Turnbull

Subject: Quick/simple but truly urgent need for you to show how great (and fast) your organization's caring can be

 Andrew/Eric:

I (actually a patient I am caring for at BIDMC) need one or both of you to show how quickly you can fix a small problem.

 1. The Problem

 My patient is a 40 year old woman (BC/BS subscriber; listed in our computer as "Federal Employee PPO w policy #xxxxxxxxx).  She is hospitalized with a major stroke (leaving her almost totally paralyzed on one side of her body) that we have found is the result of a hypercoagulable state caused by widely-metastatic pancreatic cancer. 

Every day of her likely-limited remaining life really, really matters.

She needs to start rehab immediately, but her BC/BS policy reportedly does not cover Hebrew Rehab, her preferred place.

Her wife is an HSPH employee and HPHC subscriber who is now trying to add the pt to her HSPH/HPHC plan.

 2. The Solution

Actually, I see two.

a. BC/BS could immediately approve Hebrew Rehab for her.

b. HPHC could immediately add her to her wife's HSPH plan. 

3. Request to You Two -- Compete for the Fastest Solution

I would like you to compete to see which of your two organizations can solve the problem the fastest

I suspect that a "solution" will count as winning this competition if I just have something in writing by email certifying that the problem will be solved and that the pt can be transferred to Hebrew Rehab, even if there are some bureaucratic details that will take slightly longer.

If there is anything anyone in your organization needs from me, please have someone email me immediately, or call my cell phone.

If there is anything anyone needs from HSPH, please have them contact Nancy Turnbull there, whom I have copied on this message.

4. Gratitude

Even before you respond, I am sitting here in my kitchen on my laptop marvelling at how wonderful it is that here in Massachusetts we have two health plans like yours.  You'll both understand, I hope, when I use the term "Schweitzer-spirited" as the highest form of praise. 

Thanks in advance for any help you or one of your staff people can give. 

gratefully,

Lachlan 

"The greatest thing is to give thanks for everything. He who has learned this knows what it means to live." 

 -- Dr. Albert Schweitzer (1875-1975)

 

From: Dreyfus, Andrew
Sent: Thursday, February 27, 2014 7:26 AM
To: Forrow,Lachlan (HMFP - Medicine);Eric Schultz
Cc: Nancy Turnbull
Subject: RE: Quick/simple but truly urgent need for you to show how great (and fast) your organization's caring can be

Since she is our member, let’ see if we can solve the problem this morning.


From: Lachlan Forrow

Sent: Thursday, February 27, 2014 7:32 AM
To: Dreyfus, Andrew; Schultz, Eric
Cc: Nancy Turnbull
Subject: RE: Quick/simple but truly urgent need for you to show how great (and fast) your organization's caring can be

Great.  I had told her and her wife that we would solve this by 4pm (24h after the problem was identified).  I'll now hope for noon.

thanks, thanks, thanks,

Lachlan 

From: Eric Schultz

Sent: Thursday, February 27, 2014 7:44 AM

To: Forrow,Lachlan;Andrew Dreyfus

Cc: Nancy Turnbull

Subject: RE: Quick/simple but truly urgent need for you to show how great (and fast) your organization's caring can be

Hope all goes well with your patient Lachlan. 

Andrew. If you need any coordination with Harvard Pilgrim, please contact my office directly. Thanks.

Eric

EXCERPTED From: “AZ” [staff person at BC/BS]
Sent: Thursday, February 27, 2014 10:59 AM
To: Forrow,Lachlan (HMFP - Medicine);Nancy Turnbull
Subject: RE: Quick/simple but truly urgent need for you to show how great (and fast) your organization's caring can be

 [Excerpt from original email]

 Dr. Forrow and Nancy,

 Andrew asked me to get back to you both with what we’ve learned.  Blue Cross has not received any requests for discharge… Hebrew Rehab is indeed in our FEP network, and our initial review is that at this point she would be approved for discharge to there if that request had come in and that is the place she and her doctors want her to go.

 Our apologies for the miscommunication. While it’s true that historically there was an FEP exclusion for long term acute care, that is no longer the case.  Maybe there was confusion about this…

 “AZ”


From: Forrow,Lachlan (HMFP - Medicine) 

Sent: Thursday, February 27, 2014 11:36 AM
To: Eric Schultz; Dreyfus, Andrew
Cc: Nancy Turnbull; “AZ”@bcbsma.com'
Subject: CONGRATULATIONS!!!

To EVERYONE!  (Andrew, “AZ”, BC/BS; Eric and HPHC; “XX” and HSPH; and most of all this patient and her family)

Problem solved at 10:59, 61 minutes ahead of the noon goal, and 5 hours and 1 minute ahead of what people thought was the unrealistic goal of 4pm.

Mornings like this make being in health care in Massachusetts a true joy.  Please let me know if in the future there is ever a way in which I can help any of you with something.

Gratefully,

Lachlan

I titled this blog entry "Human Suffering, Health Insurance, and a 'Miracle'" because when I first announced we would solve the problem within 24 hours more than one person said "that would take a miracle".  And afterward I heard several people refer to me as "a miracle-worker". I looked up "miracle" and found here this definition: "an extraordinary event manifesting divine intervention in human affairs."  But I don't think anything in this story had anything to do with "divine intervention"; it was just real people taking the suffering of a patient (and the patient's family) seriously.

I said I would draw three conclusions, so here are three "lessons" I think this story tells us.

1. Human suffering in hospitals is not just caused by "disease", but sometimes by our health system.

2. Sometimes human suffering can be alleviated much faster than anyone might have thought possible, especially if we just decide that allowing the suffering to continue is unacceptable.

3. Leaders of health insurance companies (or at least of two insurance companies in Massachusetts) care as much about preventing and alleviating suffering as you and I do.

On not giving what a patient what he "wants"

Posted by Dr. Lachlan Forrow March 11, 2014 06:09 AM
Since my last two postings were long, this one will be short.

I was reminded yesterday of a patient I had long ago, who I will call "Frank."  He had multiple complications of advanced AIDS, and in 1991 we didn't have the miracle drugs we have today.

One day I was sitting on a couch in my mother-in-law's den in Denver, on vacation with my family.  The phone rang, and it was Dr. Mary Fishman, my primary care colleague who was covering my patients.  It was the only time she ever called me when I was on vacation.  She said (roughly):

"Lachlan, I wouldn't call you except that Frank is back in the hospital, and he swears that you promised him that if he ever had to come back into the hospital because of the pain, you would give him all the IV dilaudid he wanted, to make the pain go away.  Is that true?"

I laughed.  It sounded just like Frank.  And of course it wasn't true.  So I explained that to Mary, and she laughed, too.  She said she would make sure Frank got the IV dilaudid that he needed, all that he needed, not what he said he wanted.  I think the Rolling Stones once wrote a song about that.  

I still remember right after Frank died, a few months later, his sister thanking me and the nurses -- I can almost see her in the hallway outside his room on the 11th floor of Beth Israel: "You guys did an amazing job.  The best thing about it was that you always let Frank just be Frank, right up to the end."

I think that's what Frank really wanted.  And needed.  And got.


The "true story" of "Mrs. Rodriguez"

Posted by Dr. Lachlan Forrow March 3, 2014 10:26 PM
Earlier today I told the story of “Mrs. Rodriguez” (not her real name), a patient who died in the hospital even though she would rather have died at home.

In the stories I write about, I believe that protecting the privacy of the patients I see, and their families, is as important as always “telling the truth”.  

But I try to have it both ways.

Usually I just change a few details: always the person’s name (unless s/he has given me explicit permission); usually a person’s age (up or down a few years); and sometimes a person’s gender.  Most of the rest of the facts I report are unchanged.

In the case of “Mrs. Rodriguez”, I went a little further – her story is not the story of just one person, but rather a composite of four patients (and their families).  Three were women, one a man.  Three had both children and grandchildren whom they loved deeply, were proud of, and wanted to be home with at the end.  The fourth was hoping, when she was in the hospital, to be home to when her first grandchild was born a few weeks later.  All four had advanced cancer.

Only one patient had been a single mother who raised her daughter "alone".  Her name was not "Mrs. Rodriguez" (I changed that), and her daughter's name was not “Mara”.  But "Mara's" real name was a beautiful one, especially the way she said it (not in English).  It reminded me of the word “miracle”, so I looked up the Spanish word for "miracle" ("maravilla") using Google Translate, and gave her the name "Mara".  The real “Mara” did have a 4-year-old daughter who was in the room when I first met "Mara" and her mother.  I did ask the daughter, who I called "Bianca" because she seemed so white/pure.  But not physically "white" at all, her skin was a beautiful brown.  So maybe it was the whiteness of her radiant eyes (the white "sclera", not the gorgeous brown "irises" or the darker "pupils") that made me think calling her "Bianca" would be (almost) "true".  I did ask "Bianca" to be my teacher -- but not my Spanish teacher, she spoke Portuguese at home.  Her favorite word was “grandma”, but she said "vovo" (Portuguese), not "abuelita" (Spanish).  The rest of the details I gave of "Bianca" in the hospital room with her mother and her "abuelita" were exactly what happened. Except that I couldn’t see her coloring book, so I don’t know if it was “Disney on Ice”.  Probably not.
  
The “Disney on Ice” part came from a different patient on the same floor less than a week earlier – a 40 year old woman hospitalized with uncontrolled pain from her widely-metastatic cancer, for which there were no more good treatments.  Or at least no more treatments that were likely to do much against the cancer cells themselves, though with her oncologist she planned to try at least one more treatment that they both hoped (but her oncologist didn't really expect) would give her more time with her children, maybe enough time to see the birth of her first grandchild.  She had been home.   But not on "hospice", she wasn't ready for that, because you can't be on "hospice", no matter how much they would be the best people to help you have good days at home, unless you are willing to give up life-prolonging treatments, since those are almost always too expensive.  Because on "hospice", even when the hospice staff help your days at home be good -- really, really good -- you aren't supposed to want treatments that would give you more of them.  Because that isn't what "hospice" is for.  It is all about "quality of life", not "living longer".  Apparently trying to have both, at least according to hospice payment rules, would be too expensive.  Even though the treatments that might give you more days at home are usually less expensive than a single day in the hospital.  

But I'm digressing.  

In any case, for this 40 year-old woman who had been at home, the morphine at home wasn’t working, her pain was terrible overnight, and there was no nurse to come quickly to see her at home.  Or at least no nurse with the training and ability to fix her pain at home.  Or at least no nurse that her insurance would pay for.  Home visits take time, and time is expensive.  So she was rushed to our Emergency Department the next morning and quickly hospitalized.  I was called at 11:30 am by her attending physician, who was worried not just about how terrible her pain was, but because she had tickets for noon the next day to take her 4-year-old daughter (not actually named "Bianca") to "Disney on Ice", which she was now almost certain to miss.  She had been looking forward to that for a long, long time, because it was "Bianca"'s birthday, almost certainly the last she would ever have with her.   And she had saved her money to buy "Bianca" a new dress -- it was going to be a surprise, along with the tickets, the next day.

It took a lot of doses of rapidly-increasing amounts of IV morphine to get her comfortable – the nurse giving it told me how scared she was giving the patient that much so fast.  By 3:30pm we were at pretty high doses, and the nurse had never given that high a dose of morphine in a single IV "push".  She was scared, but she trusted me and the attending hospitalist, who told her to go ahead and do it.  Because when you increase morphine carefully, it actually isn’t dangerous at all, even IV. You just have to know what you are doing.  

When I first saw this patient in person at 6pm her smile was radiant.  The smiles I said "Mrs. Rodriguez" -- "Mara"'s mother -- gave me were very similar to the smiles I saw in the faces -- and especially the eyes -- of the two other women from whom the composite "Mrs. Rodriguez" was created.  Actually quite different, each truly unique -- especially their eyes -- so I suppose it is a distortion, not really a "true story", to lump them all into a description of a single woman's smile.  

But even though this patient was now smiling, we of course weren’t done.  Getting close, but not quite done because of course you can’t go to “Disney on Ice” taking IV morphine.  So starting at 6pm we gave what I calculated to be the oral equivalent of the IV doses.  But the ratio can vary from patient to patient, so we needed to test out the effect of the oral doses that she would be taking at The Garden the next day, maybe every hour if  she needed to.  

I left out the part about the pharmacy initially declining to authorize such greatly-increased doses of oral morphine, and the part when the nurse on the night shift told me that they said it should be only every two hours, since every hour was too much.  And I left out the part where I called the pharmacist on the phone, who hearing it was me (actually not my name, but "Palliative Care", a team that our pharmacy has come to trust) immediately said okay.  But I took a few more minutes, even though I told the pharmacist that I knew how busy she was, because I wanted to thank her for helping make sure that, thanks to her, a mother with terminal cancer was going to take her 4-year-old daughter the next morning to "Disney on Ice".  I think that made the pharmacist proud, really proud, of how important her work is.

With the hourly doses of morphine available to them, the night nurse taking care of her successfully proved that the patient's pain could be controlled with oral medicine by 10pm. It actually didn't take much morphine, because when you know your pain can be controlled, you aren't scared anymore, and fear makes the pain much worse.  So the patient actually didn't need as much morphine as we thought she might.  She then slept well, and left the next morning at 9am, to rush home, get showered, give her daughter the present of a new birthday dress, and get to Disney on Ice on time, without pain.  I also left out the part where, sitting on the bed in her hospital johnny, about to get ready to leave, the patient looked at me and asked "Is it okay if I give you a hug?"  She laughed when I said "Of course, even though I suppose me giving you a hug wouldn't be very 'professional'".  And I left out the part about how that hug made my day.

But of course there wasn't a single thing I had done that couldn't have been done much faster, and in exactly the same way, by a sufficiently-trained nurse, including one able to start an IV that was needed only for a few hours to get "on top of" the pain, in the patients' own home.  Maybe that nurse would have wanted to call a doctor, just to make sure the high doses of morphine that seemed needed were really okay.  But doctors don't get paid for time on the phone, they only get paid for "visits" (which mostly means the patient comes to them, since the patient's time doesn't "cost" anything).  So having a doctor available by phone whenever needed probably wouldn't work.  Except it seems to for lawyers -- they bill (and get paid) for every "billable hour" they spend on a "case", which I think means every hour, whether that is in person or on the phone (actually, I think it's even for just "thinking" about the case, and I think it's every 10 minutes, not just hours).  But that has never seemed to me a good system -- it gives incentives just to rachet up the hours.  So maybe if doctors were salaried, and had to justify their salaries only by how many patients they helped, they would figure out how to be efficient in doing that.  I suspect they (we) could do a lot of things on the phone (or skype), and much faster than in some office visits.  Especially if we decided that the patient's time was worth something.

But I'm digressing again.  

When I spoke to the patient at 3:30pm (she had given me her cell phone number) she told me that she and "Bianca" had had an unforgettable time at The Garden.  But when I wrote about "Mrs. Rodriguez", I had said that it was "Mrs. Rodriguez" who had bought the tickets to "Disney on Ice" for her granddaughter, and I don’t actually know whether it was Bianca's mother or her grandma who paid for the tickets.  So maybe saying it was Bianca's "abuelita" who bought them wasn't true.  

This patient did have a 23 year old son (so she was 17 when she had him), and I left her son out of the "composite", since it didn't fit with "Mrs. Rodriguez" having just one daughter -- that was another patient from whom the composite Mrs. Rodriguez was created.  I also left out the fact that the day after "Disney on Ice" with "Bianca" this patient was hoping to go to a baby shower for her first grandchild, due a few weeks later.  When I was first called, she thought she was going to miss the baby shower, too, because the pain was so out of control.  But when she left she was once again excited about the baby shower, especially now that she had whatever amount of morphine pills she might need to talk in case the pain got worse again.  And my cell phone number if she had any questions.  Even though a home care nurse's cell phone number would have been even better, as long as that nurse had the training to give the advice I could give (which isn't actually all that complicated).  The patient was hoping that the chemo her oncologist was going to try a few days later would at least give her enough time to hold her first grandchild. I haven't heard yet how that worked out, and keep meaning to call, but there are more patients in the hospital to see, others who wish they were at home.  

The “3 jobs” that I said “Mrs. Rodriguez” sometimes worked is something I have heard from more than one other patient, usually a patient fairly new to the US (who is usually also a "new US citizen", and probably more proud of that than I can ever be, no matter how hard I try).  But I did not actually hear about "3 jobs" from any of the four patients from whom I drew the other details of "Mrs. Rodriguez"'s story.  So maybe that was an exaggeration, though I'm pretty sure that at some point all four of them worked more than one job, and some probably more than two.  

“Mara" was 4 when her father left.  

The details about the expensive inpatient medical interventions – xrays, lab tests, the “celiac plexus block”, the replacement of the “biliary stent”, etc. etc. – are all exactly as they happened, but the “celiac plexus block” and the “biliary stent” were in two different patients.  

If I had wanted to add other expensive interventions (sometimes effective, often not) that we did for the four patients from whom I created the composite "Mrs. Rodriguez", I could have included: 

**a surgically-placed “gastrojejunostomy tube” for medications and feeding, which is a wonderful device for some patients, but didn’t change the outcome for the one we placed it in; we hoped it would somehow allow us to get him home, or at least out of the hospital, but he died with us, and his family were all in the room at ~2am.  So the part about "Mrs. Rodriguez" dying "alone" in a hospital room wasn't true for all four patients, though it happens often enough in our hospital that I thought it would be "true" to say it happened to "Mrs. Rodriguez". 

**multiple nasogastric tubes – three of the four of patients had at least one "NG tube"; they often need to be replaced, since sometimes the patient is confused and pulls it out; or sometimes it's not "confusion" at all, an "NG tube" isn't very comfortable and most patients don't really "want" them; in two of the patients they helped transiently with comfort by “decompressing” the patient’s stomach, which couldn’t empty because the “outlet” was blocked by cancer; but that help never lasted long.

**more blood tests, xrays, CT scans, MRI’s, and other imaging studies than I can count, which sometimes do give us important information; but when a patient is dying soon, doing another "test", then waiting for the results, and then sometimes doing more tests after that, which sometimes leads to more often means at least another day (or two, or three, or four or five) that the patient is not at home; all these "tests" -- and the extra time in the hospital they require, usually make the patient, and the family, literally very "testy", and I left that issue out, too.

**more (usually expensive) IV meds than I can count, since it is much easier to give meds IV than orally when a patient is hospitalized and has an IV already in place; but hospice nurses are ingenious at crushing most meds and getting the exact same chemical quite effectively into the patient’s bloodstream through rectal suppositories, improvised skin patches, or just placing them under the tongue and letting them slowly dissolve – in almost all cases with efficacy that is similar to IV, though often slower in onset of effect, and of course much slower at consuming budgets;

**even quite a few doses of IV acetaminophen – obviously much easier for a nurse to give than a rectal suppository (and easier for the patient, too), but more than 10 times as expensive, and as far as I know, not more effective.  But the nurse (and the patient) sometimes feel better when a medicine is given "IV" -- they can see how directly and quickly it is going "in".  And that sometimes distracts them from the fact that the patient would feel even better being at home, without any IVs.

The importance of faith to “Mrs. Rodriguez” was true for all four patients from whom her “composite” was drawn.  

Three of the four were Catholic. It's still amazing to me sometimes how leaving something "in God's hands" -- including something as important as how long you (or your mother) will live -- is okay with patients (and daughters) whose religious faith is strong.  But only if it is clear (and really true) that when I say that I do not mean that anyone is "giving up".  I have known very few patients (and even fewer daughters) who ever want to "give up".  And I find it helps me, too, to hope for "a miracle", since (as I tell them) "hope has nothing to do with probabilities", and I have seen many "miracles" happen.  Even though the actual "miracle" is almost never the one that people are praying for (living longer, maybe even forever), but that would take longer to try to explain.

All of the other descriptions in my story of "Mrs. Rodriguez" were as accurate as I know how to make them, though only one of the four patients actually used the words “You are my family, too.”

And I'm pretty sure that "Mrs. Rodriguez" (actually all four patients whose stories were combined into one) did always pay a higher tax rate on her earnings than Warren Buffett does.  That's one of the things Warren Buffett himself says is wrong with our tax system.  If we need  to spend a little more money to take better care of "Mrs. Rodriguez", Warren seems ready to help.  But I don't think we need more money than we already have.  Probably less.


So was my story of “Mrs. Rodriguez” “true”?  You can decide.

But whether you think her story was “true”, or “based on a true story”, or "based on four true stories", or something else, the facts of what Medicare does (and does not) pay for, in the hospital or at home, are real.  

And those facts are a large part of the reason why not one of the four patients died at home, even though all four would have wanted to.  In these four cases, maybe it was more true than we like to think that "it was all about the money." 

And there is one thing in all of this that I am sure is true:

Teddy wouldn’t be happy, probably wouldn't even be able to sleep well at night, until some very fundamental things about our health care system change.

You and I shouldn't either.  

But I know that's not very helpful, unless/until you and I have figured out exactly what we are going to do about it.  I have some ideas about that, too -- mostly ideas from other people who understand our health system, and how to fix it, far better than I do.  

But those will need to wait until future postings.

Ted Kennedy Would Have Loved Mrs. Rodriguez

Posted by Dr. Lachlan Forrow March 3, 2014 06:36 AM
Teddy would have loved Mrs. Rodriguez.

He would not have loved the way we took care of her at the end of her life.  He wouldn't have been satisfied, even though she got “the best medical care money can buy."  She really did. 

But Teddy would have wanted it to be even better.  

Mrs. Rodriguez wanted to die at home with hospice.  But instead she died in the hospital.

Teddy would have loved her – she was his kind of person, the kind who has always made America great.  Her parents came here (I suspect illegally, but she never said that) when she was a baby. Her father disappeared when she was just 4, I'm not sure why or how.  So her mother raised her as a single parent.  Mrs. Rodriguez never finished high school – I think maybe because she got pregnant, though all I know is that her daughter Mara (short for “maravilla” or “miracle”) was born when Mrs. Rodriguez was 17.  

Mrs. Rodriguez raised Mara alone, sometimes working 3 jobs.  But that was okay.  Mrs. Rodriguez was never truly "alone" --  a neighbor took care of Mara during the day until Mara was old enough to go to school.  Then Mara’s cousins helped out when Mrs. Rodriguez was at work.  They obviously were a very close-knit family.

The first time I met Mrs. Rodriguez, I had been called to try to help with the pain that her cancer was causing, pain that at times was terrible, though Mrs. Rodriguez never complained.  “7 out of 10” was the highest rating she ever gave it, even when you could sometimes see how much agony she was in.  It looked like at least “9 out of 10”, but she never said higher than “7”.  I don’t think she liked to complain.

The first time I went into the room, I didn’t see a sick woman, I saw one of the most beautifully radiant smiles you can imagine.  My first question to her was “Where did you get that smile?”  She didn’t pause for more than a second (or two), just looked at me with her deep brown eyes and said softly “from God.”  She smiled again.

I loved seeing the way she looked at Mara with such love.  Not just love, but pride.  And maybe even more of both -- love and pride -- when she looked at Mara’s gorgeous 4-year-old daughter Bianca.  When Bianca was there, Mrs. Rodriguez always seemed okay – more than okay, since being around Bianca’s eyes and smile would make anyone’s day a good day.  And the pain didn’t seem to come so often.  But Bianca couldn’t come very often, and a hospital room isn’t a very good place for a 4-year old, anyway.

I think Bianca may grow up to be a teacher.  When the Spanish translator for my first visit had to leave, I said “I really need to learn Spanish myself.  Bianca, could you be my Spanish teacher?”  She beamed.  I said “Maybe just one word each day.  What’s your favorite word?  Can you teach it to me?”  She paused shyly, and returned to her coloring book.  I tried again.  “What’s your favorite word?  I bet you have one.”  She looked up, then looked over at the bed.  She paused, clearly wanting to pick her favorite word.  Her very favorite one.  Then, after a minute or so, she said with great conviction “abuelita”.  Mara told me that means “grandma” or “Nanna”.  

Even though what Mrs. Rodriguez really wanted was for us to fix her cancer, she knew we couldn’t do that.  Only once did I see her eyes seem to tear up about that -- it was hard to get her even to talk about it.  And as I think about it, I realize that even the one time I saw her almost start to cry, her eyes were not tearing up about the cancer.  That one time was right after I had made sure that she understood that we didn’t have anything to help make her live longer.  I knew how strong her Catholic faith was, so I said that "living longer" was “in God’s hands”, and she seemed fine with that.   

But then I said that what we could do is make sure every day was as much the way she wanted it to be as possible.   And as I think about it, her eyes only started to get watery, that one time, when I asked her “What makes something a good day, a really good day?”  She didn’t answer at first.  But then I got her to talk to me about Mara and Bianca, and how maybe a “good day” meant a day with them.  She immediately agreed.  And smiled again.  But then her eyes got really watery, though only for a minute.

So it became clear that all Mrs. Rodriguez really wanted was to get home, and have Mara and Bianca there.  And not in too much pain (6 out of 10 would be okay).

But as is true for many of my patients, hospice (or more precisely the insurance rules of the “Medicare Hospice Benefit”) couldn’t provide the support at home she needed.  24-hour nursing care would have been way too expensive, of course.  If she was sure to die quickly at home hospice might have been able to provide even that – the Medicare Hospice Benefit allows that kind of thing at home for a day or two.  But it was possible that she might live for weeks, maybe even a month or more.  And the amount of nursing time she would need to make sure the pain and other problems were okay was going to be too much.

So we found another way to get her the 24-hour nursing care she needed.

We got her 24-hour nursing care continuously for almost a month, even though that costs a lot.  She got it because we kept her in the hospital, kept her on IVs and antibiotics and an oxygen mask (which she didn’t really want) when she got her pneumonia.  We kept closely monitoring her blood tests and xrays (which she didn’t really want, and which didn't make any difference anyway since we could tell she had pneumonia without them). 

We even talked at one point about trying one last round of chemotherapy, which she and we knew wouldn’t help.  But IV chemo would count as a reason to keep her in the hospital.  Or at least a reason that Medicare would consider a good reason -- which means something that is "medically necessary", and requires "hospital level of care".  (Medicare only covers things if they are "medically necessary."  Fortunately, it covers everything that a doctor determines is "medically necessary."  Or at least everything that is "medically necessary" according to Medicare's criteria.  And apparently nursing visits to a patient at home, at least more than once in a while, are not "medically necessary".)
  
At one point we tried an expensive (and wonderful) “interventional pain management” approach to control her pain – a “celiac plexus block” that actually did work wonders, even allowing her to be more awake to enjoy Mara and Bianca's visits.  

But Mrs. Rodriguez would have been happier with simple morphine at home, not minding the deep sleep caused by the high doses she would have needed.  I imagined her saying good-bye to her family (with her eyes, even if she could never say the words).  I imagine her feeling totally "at peace", knowing she was home.  Bianca probably have been there in the room, sitting on the floor, working, as usual, on her coloring book.  Bianca got it – a “Disney on Ice Coloring Book” --  the time Mrs. Rodriguez took some of the last money she had saved up over the years and insisted that Mara take Bianca to go to Disney on Ice at the Garden, and buy her something special.  It was Bianca's 4th birthday, and Mrs. Rodriguez knew that it was probably the last one she could help make truly unforgettable.  

But when I talked with Mrs. Rodriguez about getting her home, and when I tried to explain that the wonderful hospice nurses would only be a phone call away, Mrs. Rodriguez for the first time suddenly looked scared to me.   This didn’t make sense, since I knew that all she wanted was to go home.  

But when we talked a little more, she told me that she would have been scared the whole time.  Not in words, exactly, but we could all see it in her eyes.  Scared without a nurse there 24/7, because every once in a while in the hospital the pain had come in a sudden, terrible and terrifying wave.  Every time, a nurse was always right there with some IV morphine, which always worked in minutes.  Oral morphine (we tried that) can take an hour, and an hour is a very long time when you are suddenly in terrible pain.  And even if the terrible pain never actually comes back, once you have had terrible pain, worrying that it might come back can be terrifying.  Terrifying 24/7, unless you know a nurse is always right there.

And being terrified the pain might come back, and might not go away for at least an hour, would make it hard ever to smile, even when she was looking over and saw Bianca on the floor, working on her coloring book.

We even got Interventional Radiology to come by again and try to replace her “biliary stent”, to drain the bile that was backing up again, causing more pain (and nausea, and vomiting) because her tumor had grown and was obstructing her bile ducts.  The first stent had worked for a while, so maybe a new one would now work better.  It did.  And between the stent itself, the imaging studies before and after it was placed, the radiologists’ time, and a few other things, fixing her stent only cost a few thousand dollars.  Which Medicare was happy to pay.

I kept trying not to feel frustrated that being at home with what she needed was impossible, since it would have been too expensive.

So Mrs. Rodriguez stayed with us – she even said “you are my family, too.”  She got a lot of superb “medical care” – not just superb, she got the very best.  Truly the “best in the world.”  It didn’t matter that she was poor – or maybe I should say "not wealthy", since she didn’t seem to know she was poor.  

When it came to caring for Mrs. Rodriguez, it was wonderful to know that money was no object, since it is wrong to deny a person the medical care they need based on money.  Or at least it is wrong if the person is in the hospital.  Or at least it is wrong if the person is a patient who has Medicare.  I think that denying "medically necessary" care to someone with Medicare is illegal.  (Though it seems to be legal if it is the person who is "illegal").  

Besides, Mrs. Rodriguez had Medicare because she worked 3 jobs for so many years, and paid her taxes.  At a higher rate (at least as a percentage of her income) than Warren Buffett.  She had earned it.  And Medicare was there for her when she needed it.


Mrs. Rodriguez died comfortably and peacefully, surrounded by family.  But not at home the way she wanted.  

Actually, she wasn’t surrounded by her real family – it was 2 am, on one of the few nights when Mara had decided to be home with Bianca instead of sleeping on the cot in her mother’s room.   But it helps me to be able to write “surrounded by family”, which I actually think was true, since one of our nurses was in the room, and Mrs. Rodriguez had assured me that “you are my family, too.”  

Well actually, the nurse wasn’t exactly in the room when Mrs. Rodriguez died – she was in the next room with another patient.  But I told Mara that her mother hadn’t been alone when she died, that her nurse had been “with her”.  I didn’t have the heart to say “but only in spirit”. 
 

Teddy would have loved Mrs. Rodriguez – she was his kind of person.   

He would have loved Bianca just as much.

Teddy would be glad to know that Bianca will almost certainly be able to go college, maybe with a Pell Grant that will cover her tuition at U.Mass.  I bet she’ll be in the Honors Program, which I hear is great.  And I bet Bianca will be able to pay the rest of what U.Mass. costs, maybe with a merit scholarship, though more likely also helped by some loans she will pay off.   Even if it means working 3 jobs during the summers.  And maybe a job in the evenings and on weekends during high school, so she can start to save up.  She won’t mind – it’s just the kind of thing her “abuelita” did when she needed to.  And I know Bianca would give anything if she can be like her "abuelita" when she grows up.

If Teddy were alive, I bet he could fix things so that in the future people like Mrs. Rodriguez can die at home, with everything paid for and a lot of money left over.  Money to pay for other things Mrs. Rodriguez would have loved.  Things she would have wanted even more than getting “the best medical care anywhere in the world” during her dying days.  

I bet, for example, that with the tax dollars that we spent making sure Mrs. Rodriguez got “the very best”, Bianca could go to Harvard.  And just be able to study, without needing to take jobs at night or weekends, even though I know those would “build character”.


So maybe we should fix things, maybe at least here in Massachusetts, since I hear it is hard to get things done in Washington without Teddy there.  

Maybe if we fix a few things about the way we currently spend money in the last part of a patient's life, we’ll have some of the money we need to fix the elementary school Bianca will go to next year.  And all the buses Mara has to take to get to work, so she’s not late to work, or not so late getting home after work to Bianca.  And to make Bianca’s neighborhood safer, so none of her 4-year old friends, when they are in high school (if they haven’t dropped out), are ever in the emergency room with a gunshot wound.  

But at least it's good to know that when one of Bianca's friends is in the emergency room, or maybe in the operating room with some of the best surgeons and equipment in the world, and then in the hospital afterward -- well, it’s good to know that they’ll get the best medical care.  The best in the world.  

Because this is America.  And especially when it is a question of possible life or death, we take good care of Americans.

Even if it might cost a lot of money to try one more round of chemo for their cancer (even though it probably won’t work), or when we need money to control their cancer pain (as long as they are in the hospital), or when we need money for antibiotics, oxygen, and Xrays to treat their pneumonia (even if they are going to die soon anyway).  Because that's what hospitals are for.

This is America, and when it comes to life or death, how much something might cost -- or whether there might be a better use for some of the money -- is irrelevant.  Life is sacred, right to the very end.  At least in the hospital.  

When it comes to life or death, how we spend our money must never be allowed to matter. 

Ever.

Our political leaders seem to have learned all too well that anyone who asks whether we are "spending our tax dollars on end-of-life-care wisely" obviously cares more about money than human life.  Even asking the question must mean you are in favor of "death panels" and "pulling the plug on Grandma."    

But Teddy would have loved Mrs. Rodriguez.  And Bianca.  And if he were alive, he wouldn't be afraid to ask any question that might help us figure out how to take better care of them.  Both of them. 

And not only in the hospital.

Medical "Science" v. Maternal "Instincts": No Good Answer?

Posted by Dr. Lachlan Forrow February 16, 2014 07:07 PM
What should happen when "medical science" and "maternal instinct" give completely opposite answers to an important question?  

While the case of Jahi McMath drew headlines around the world recently, irresolvable conflicts over "brain death" are thankfully fairly rare.  But almost daily, in virtually every ICU, doctors and families grapple with difficult questions about what to do when "medical science" says a situation has become "hopeless", but family members refuse to let go of "hope", no matter what the doctors say.

A good answer to a truly difficult question can be very, very hard to find.  Sometimes, maybe even impossible.  When the question is hypothetical, then even if no answer is ever found, the search for an answer can be energizing, sometimes even a lot of fun.  

But when the difficult question is utterly real...when a life that is hanging in the balance may depend on the answer...when the suffering of people involved is agonizing to see...when that suffering seems impossible to "fix" no matter what you decide to do...

When all these things are true, then an unsuccessful search for an answer -- not even a "good answer", maybe just "the best anyone can do" -- can be unbearably hard.

                                                                 ◊

Imagine an ICU room.  

And maybe not an "imaginary" one.  There are over 6,000 ICU's in the U.S. today, more than 90,000 total ICU beds, and more than 21,000 pediatric ICU beds in which critically-ill children are being cared for.  I suspect that this very morning there are at least several pediatric ICU rooms -- maybe even dozens -- very much like the one I will ask you to picture in your mind. And probably as many adult ICU rooms, too.

A young patient lies in the bed, connected to life-saving machines, but with severe brain damage from a tragic event.  All of his doctors, based on state-of-the-art tests and decades of combined experience, know that "meaningful recovery" is not going to happen.  Some say, cautiously, that the chance of recovery is "remotely unlikely."  Others say it is truly "nil".  

But the mother, even after listening as hard as she can to the doctors, even after trying as hard as she can to understand them and trust their knowledge and experience, cannot bring herself to do so.  She knows they know more than she does.  She knows they have tried everything possible.  She sees that nothing has helped.  But still.  What if there is a miracle?  What if her son is "the first"?

Every time the young patient shows any sign that he may be suffering -- moving an arm or leg in ways that suggest to staff that he is in pain, they cringe -- why are we doing this????

But every time Mom sees that same movement, her heart leaps in hope -- maybe he's waking up!   

In the back room where the deeply-caring nurses, doctors, social workers, and pastoral care staff sometimes congregate, wishing they could do something to help Mom understand and accept the terrible "reality", words like "unrealistic" and "denial" and "it's so sad" intermingle. And since many of the nurses and doctors are parents themselves, sentences like "If this ever happened to my own son..." are often too painful even to complete.

Between sips from cups of strong but now-almost-bitter coffee left in the pot from overnight, everyone agrees on only one thing: 

"There is no good answer." 

And then the nurses return to their work, half-dreading the next time they need to go back into the room, where Mom keeps constant watch over her son.  Even during the far-too-brief naps Mom sometimes can't help needing to take, on the cot the nurses brought her the very first night, Mom struggles to keep one eye open.  

But the nurses and doctors are too professional to let themselves approach the door to the room only in dread. Their job is to help, and they are able to keep doing their job because they, too, refuse to let go of hope, although it is a different hope from Mom's.  Their hope, against all odds, is that the next time they go in the room they will find a "miracle", one they have seen before.  More than once.  The miracle that Mom has finally realized that she has lost her child, and is willing to let the nurses, doctors, and social workers try to help her find a way to cope...

But days start to become weeks.  Mom keeps her constant watch, unwilling to leave.  And now, she even starts lashing out at anyone who suggests, as gently and compassionately as it is possible to do, that "maybe you need to go home and get some rest."

Only one thing becomes clearer and clearer: there truly is "no good answer."

I have no good answer, either.  

And it got even harder when I opened a small, hand-addressed card on Wednesday, mailed to me at my office from somewhere in Utah.  I opened it, and here is what I read (the writer has given me permission to share it):

Dear Dr. Forrow,

 I read your article in the Boston Globe, January 28, 2014.  I then read other articles posted on your web sites.  One discussed the family of Jahi McMath – “When is Someone Dead?  Biology, Humanity, and the Law” – posted January 20, 2014.  In one paragraph you quote a professor of bioethics commenting on her family’s views:

“There is a word for this: crazy.”

You take a much more humane attitude to the family in such an ordeal and that is why I am writing to you.

In 1979 my family was in the same situation.  My child had a cardiac arrest during an operation and the loss of oxygen caused brain damage.  He was transferred to MGH PICU and to the care of Dr. David Todres.

All tests showed that there was no brain function – the lack of oxygen had totally destroyed his brain.  His body had ‘postured’ – rigid and contracted into a fetal position.  His eyelids were contracted and his eyes were ‘bare’ showing his pupils were fixed.  There was no response to any stimulus.

Dr. Samuel Kim said such cases are best left to the instincts of the mother.  My child remained in this state for weeks.  Today he is out skiing while I write this.  We stayed in touch with Todres and he was delighted to follow the progress over the years.  We have overcome nearly all the ‘nevers’.

With all best wishes.

Sincerely,

Joy S.


When I told a wise and deeply-experienced nurse about this card, she listened thoughtfully, but then said: "But that was 35 years ago, our tests are much better today."

Yes, they are.

But are we really sure they are right?

And even if they are, does that give us an "answer"?

                                                                      ◊
 
These are very "big" questions, in multiple ways -- tremendously difficult, enormously complicated, but hugely important.  We have to try to answer them, even when we find we can't.  

But sometimes, while we are admitting that we have no good answer (yet) to one question, we can ask ourselves a different one.  Maybe, as we approach the door to the ICU room, we can remind ourselves that we aren't responsible for solving every "big" question, or at least not right now.

Maybe, approaching the door, we can overcome some of our dread by leaving any big questions aside for the moment.  Maybe instead we can ask ourselves some much smaller ones, maybe the only ones that really matter right now:

How can I help Mom know -- and maybe, at least briefly, feel -- how much I care?  

How can I help Mom realize that she is never completely alone, that we are all "with her"?

How can I make sure Mom always at least knows one thing: how much we all would like to help?

When You Don't Like the Answer, Change the Question

Posted by Dr. Lachlan Forrow February 10, 2014 12:27 AM
My father learned in law school that asking the right question is often more important than giving the right answer.  

He also learned that whenever answering a question will not help your client, a good lawyer will try to change the question. 

The same thing is true for doctors and patients. 

Dad's 87th birthday would have been last Thursday.  In honor of his birthday, this blog entry will focus on questions -- questions that have come up recently in the care of patients I was consulted on, and different questions that turned out to be more useful.  In each of the cases below, it seemed clear that even a "100% correct" answer to the initial question was not going to be very satisfying to anyone -- because it was not going to help us succeed in caring effectively for our patient (or her/his family).

Figuring out the right question, rather than just answering the one that has been posed, can be difficult, and almost always takes additional time up front.  But that time is also usually very well invested, and often saves time later on.  As Einstein said:

"If I had an hour to solve a problem I'd spend 55 minutes thinking about the problem and 5 minutes thinking about solutions."

For each of the cases below, the "correct answer" to the initial question was not going to leave any involved doctor or nurse satisfied with (much less proud of) their care.  When the alternate (and much more difficult) question was posed, in each case the doctors and nurses found a path that they all agreed led to care for their patient/family that they could be proud of.

(Note: personal details about each patient and family have been altered, out of respect for their privacy.)

1. An elderly woman with pneumonia 

An 87 year old woman with advanced dementia, unable even to recognize her husband and children, is nonetheless cared for by them, with tireless devotion and heroic effort, for years at home.  She is hospitalized with pneumonia, requiring intubation and life support in the ICU. Ten days later she is successfully extubated and is moved to a general medical floor, where she is not only unable to communicate meaningfully with staff, but sometimes very agitated and disoriented, pulling out IV's.  Her son, her legal health care proxy, insists that she be tied down if necessary to continue her life-saving antibiotics.  He also says that long ago he promised his mother that he would never agree to a "DNR" order for her.  Her attending physician believes that if the patient has a cardiac arrest, CPR with near-certainty would be unsuccessful, and even if it succeeds then the patient would at most have a prolonged return to the ICU before dying there.  She therefore believes that doing CPR would be inhumane.  The patient's nurses (who, if the patient has a cardiac arrest, would most likely be the ones to initiate CPR, quite possibly hearing/feeling the cracking of the patient's ribs as they did it) agree completely.  

Initial Question: If the patient has a cardiac arrest, do we have to do CPR?
Correct (but not satisfying) Answer: No.   (BIDMC policy supports the judgment of an attending physician who determines that a proposed intervention would be "ineffective" or "harmful".  The patient or family member has a right to a second opinion, and/or transfer to another facility.)

Alternate Question: How can we help this son have confidence that his mother will be cared for the way she would have wanted, receiving "heroic efforts" of "intensive caring", including everything that might help, and omitting only things that would be inhumane to even try?
Answer: It took not only substantial time listening to and reassuring the son about all the things that were being done (and would be if needed); it also took repeated reinforcement by nurses in the room, proving in unmistakably-concrete ways that they were doing "everything possible" to help his mother.  


2. A middle-aged man with a massive stroke

A 54 year old man is on a ventilator after a massive, totally-unexpected stroke.  Tests prove beyond any doubt that his entire brain is now "dead", though his heart continues to beat, and the ventilator continues to "breathe" for him.  But he is legally dead, and normally, after this is explained to the patient's family, after a brief period allowing family to say "goodbye", the ventilator is turned off.  When the ICU doctor explains this to family gathered in the room, his daughter insists that a miracle could still happen, and refuses to agree to stopping the ventilator.  Other family members seem able to accept the doctor's judgment.

Initial Question:  "Can the ventilator be turned off?"
Correct (but not satisfying) Answer: Yes.  (Massachusetts law is crystal-clear on this.)

Alternate Question: How can we make sure both that (a) the daughter knows her views are not only heard and understood, but also deeply respected; and (b) the ventilator is stopped within a reasonable period of time?
Answer: After introducing myself to the family gathered in the patient's ICU room, I met, at the daughter's request, alone with her.  Over the next 30-40 minutes, spent mostly listening and sympathizing with her, I understood why she was having such a difficult time.  In addition to the nightmare of what had happened to her father, I also listened to her tell me about her aunt, hose doctors years ago had confidently said was “brain dead”. Her uncle refused to agree to stopping life support, and three weeks later her aunt woke up, and lived another seven years. After I explained why in her father's case it was biologically impossible that the tests were wrong (one showed zero blood was even reaching his brain), we returned to her father's room, and the ICU staff offered her and the rest of the family "whatever time you need" to say whatever they wanted to say to their loved one, before the ventilator was turned off.  Three hours after I had first been paged, the family (including the patient's daughter) left calmly, thanking us for our care.


3. A young woman with life-threatening substance abuse

A 32 year old woman is hospitalized with fevers and shaking chills from a dangerous blood infection ("sepsis").  Several years ago she had developed a life-threatening infection of one of her heart valves from using a dirty needle to inject heroin.  Her life was saved by one of our cardiothoracic surgeons, who replaced the infected valve with a new artificial valve.  Last year she was re-admitted, again with a life-threatening infection from another dirty needle. Almost no heart surgeon in the U.S. would do a second "valve replacement" for a patient with recurrent active drug use, because the odds of re-infection, recurrent valve failure, and death are so high.  But after the patient's mother comes to him sobbing, pleading with him to give her daughter another chance since she will certainly die without the surgery, he agrees to do the operation, which is successful.  

Soon afterward, she resumes her drug habit.  When she is re-admitted to us she has three different life-threatening bacteria growing in her blood culture, and the same blood sample also tests positive for heroin. When she demands higher doses of narcotics for pain from a tooth abscess she is found to have, the resident refuses, and the patient angrily announces that she is going to leave. The resident consults our legal department, who says that without a court order (a "Section 35", which we do not have) we have no legal basis for forcing the patient to stay.  Both the resident and infectious disease specialists believe that if she leaves before completing additional IV antibiotics, she will almost certainly die.  

Initial Question: If she insists on leaving, do we have to let her go?  
Correct (but not satisfying) Answer: Yes.

Alternate Question: What will it take to get her to choose to stay, without violating any physician's (or nurse's) professional standards and integrity (including about appropriate administration of narcotics)?
Answer: On further discussion, she insists that the fundamental issue for her is respect, and that if she doesn't feel respected she will leave.  After identifying and agreeing to several concrete things that she says will prove to her that we respect her (not including any compromise about the increased narcotics she had been demanding), she stays voluntarily. Four days later, a court order for treatment is obtained, and after completing her course of IV antibiotics she is transferred to a locked inpatient substance abuse treatment program.



One thing that every one of these cases took was substantial time, and most of that time fell outside of the usual categories of medical diagnosis and treatment for which physicians are paid.  And each of these cases raises serious broader issues about how our health system functions (and doesn't) today.  I'll be writing more about both of those issues in future "Mortal Matters" entries.

Invitation to Dialogue: Caring for "Brain Dead" Patients, and Their Families

Posted by Dr. Lachlan Forrow February 2, 2014 10:01 PM
No family should suffer through nightmares like the ones experienced by the families of Jahi McMath and Marlise Munoz.  

The Munoz family's nightmare should never recur: the body of a dead woman in Texas, who everyone (her doctors, the hospital, and family) agreed met criteria for "brain death", was kept on "life support" because she was 14 weeks pregnant.  The nightmare continued for two months, ending only when her husband sued the hospital in court for "“cruel and obscene mutilation” of a dead body, and the judge ruled in his favor, ordering that she be declared dead and removed from the "life support".

But variants of the McMath family's nightmare will almost certainly recur -- doctors insisting that a loved one is legally dead, but family finding it impossible to accept because her heart is still beating.   

In the McMath case, a judge allowed the family to take custody her (legally-dead) body, her lungs still inflating and deflating on a functioning respirator, and her heart continuing to beat. Three weeks later, her family reportedly continues to believe she is alive.

I expect that after these highly-publicized cases, other families, when they are told that a loved one with a beating heart is dead, will try to prevent the ventilator from being stopped.

What, if anything, should we be doing differently when a patient is brain dead?

Should states reconsider their laws about when someone is legally dead?  

Should state laws allow the possibility of an exception when a family disagrees with "brain death" criteria?   New York and New Jersey laws already allow the possibility of exceptions on religious grounds -- should these be extended to all 50 states?  Why should exceptions be limited to "religious" grounds?

Or should we instead use the recent publicity to strengthen public acceptance of the idea that a patient who is "brain dead" is, in fact, legally dead -- as the judges in both the McMath and Munoz cases affirmed?

In trying to answer these questions, we need to hear as many voices as possible of the general public -- people who may one day be sitting in shocked disbelief, as a loved one's doctor tries to explain that a patient whose heart continues to beat is actually dead.

How should we care for patients who are "brain dead"?  How should we help, and care for, their families?

Please offer your thoughts in the "comments" section of this blog.





 

When is Someone Dead? Nightmares in Texas

Posted by Dr. Lachlan Forrow January 28, 2014 07:05 AM
The first nightmare started at 2 am on November 26, when Erick Munoz found his wife Marlise unconscious on their kitchen floor.  She was 33, and 14 weeks pregnant, with their second child.

A trained paramedic, Erick immediately started CPR. Hope must have fought against terror as Marlise's heart resumed beating, and she was rushed to Fort Worth's John Peter Smith (JPS) Hospital, where she was placed on life support, including a mechanical ventilator.  

But two days later, her doctors determined that she "met the clinical criteria for brain death" -- the "irreversible cessation of all functions of the entire brain".  Since in all 50 states a patient who is "brain dead" is legally dead, they should have simply declared her dead, but apparently they did not.

And then the second nightmare began. 

The Texas Advance Directives Act, in most ways designed so that Texans can ensure that their wishes about end-of-life care are respected, contains an exception: 

Sec. 166.098.  PREGNANT PERSONS.  A person may not withhold cardiopulmonary resuscitation or certain other life-sustaining treatment designated by the board under this subchapter from a person known by the responding health care professionals to be pregnant.

Invoking this law, the hospital refused to stop Marlise's respirator, ignoring the pleas to stop from Erick, and from Marlise's parents.  Even if Marlise had been technically/legally "alive", they said, she had made it clear to them (she was herself a paramedic) that she would never want to be kept alive this way.  And since Marlise's entire brain was now "dead" from the prolonged lack of oxygen during her cardiac arrest, then surely the developing fetus was also severely and irreparably damaged as well.  

Unlike the mother of 13-year-old Jahi McMath, who seeing her daughter's heart continuing to beat could not believe or accept the doctors' insistence that Jahi was "dead", Erick Munoz, a trained paramedic, understood exactly what "brain dead" means.  As days turned into weeks, seeing his wife's body nonetheless still attached to machines became more and more horrifying.

After nearly two months, Erick sued the hospital in court 
erick-marlise-munoz.jpg
for "cruel and obscene mutilation" of a dead body.  As he stated in his sworn affidavit:

As a married man, I became very familiar with the way Marlise’s body felt, the way her hair smelled, and the way her eyes appeared when we looked at each other, among other things.  
Over these past two months, nothing about my wife indicates she is alive...

When I bend down to kiss her forehead, her usual scent is gone, replaced instead with what I can only describe as the smell of death. As a paramedic, I am very familiar with this smell, and I now recognize it when I kiss my wife. 

In addition, Marlise’s hands no longer naturally grip mine for an embrace. Her limbs have become so stiff and rigid due to her deteriorating condition that now, when I move her hands, her bones crack, and her legs are nothing more than dead weight…

Finally, one of the most painful parts of watching my wife’s deceased body lie trapped in a hospital bed each day is the soulless look in her eyes.  Her eyes, once full of the “glimmer of life”, are empty and dead.  

My wife is nothing more than an empty shell.  She died in November 2013, and what sits in front of me is her deteriorating body…I just want to put my wife’s deceased body to rest, and provide peace for our family.”

On Friday, Judge R.H. Wallace ordered the hospital and it doctors "to pronounce Mrs. Munoz dead and remove the ventilator and all other "life-sustaining" treatment from the body of Marlise Munoz."  On Sunday the hospital and its doctors complied.

Hospitals, and their doctors, are supposed to be there to care for us, especially when our worst nightmares have come true.  They are not supposed to be in the business of causing nightmares.  

Erick Munoz's first nightmare was a tragedy.  His and his family's second nightmare was unconscionable.  All that needed to happen was for Marlise's doctors to do their job -- having determined that she "met the clinical criteria for brain death", as the hospital itself acknowledged they had done on November 28, all they needed to do was pronounce her dead. The Texas Advance Directives Act, as the court confirmed two months later, applies only to living pregnant women, and should simply have been both medically and legally irrelevant.

But apparently even the JPS doctors themselves didn't completely believe that meeting "clinical criteria for brain death" is quite the same as being "dead".  Until we as a society reach a more solid consensus about when someone is "alive" or "dead", and until doctors and hospitals become more reliably skilled in caring compassionately for family members whenever someone has "died", variants of the nightmares of the McMath and Munoz families will almost certainly recur for others.

When is Someone Dead? Biology, Humanity, and The Law

Posted by Dr. Lachlan Forrow January 20, 2014 05:32 AM
It used to be pretty obvious.

But the swirling controversies about 13-year old Jahi McMath, including a video of her parents explaining why they refuse to accept that she is "dead", demonstrate vividly and painfully that it no longer is.  

Her parents are not the first to question current medical and legal definitions of when someone is "dead" -- I was involved myself in a very difficult case at my own hospital several years ago.

For Jahi's doctors, it was simple, obvious, and indisputable.

On December 9th, Jahi suffered a major hemorrhage after throat surgery, and despite full life support, including a mechanical ventilator to breathe for her, lapsed into a deep coma.  On December 12, doctors confirmed that she had irreversible loss of all brain function (a result of her brain being deprived of oxygen for too long), and in accordance with legal standards for defining and determining death, declared her dead and issued a death certificate.  

For Jahi's parents, it was also simple, obvious, and indisputable.

As her mother said, "Her heart is still beating, so there is still life there."

As is typical in "brain death", because of the "life support" machines, including the mechanical ventilator that was breathing for her, the rest of her body, including her heart, had continued to receive oxygen, and so had continued to function.  But she was now "legally dead" in accordance with standard "brain death" criteria that are accepted in all 50 states.  Normally, all machines are then stopped.  With her brain itself not functioning at all, she would not take any breaths on her own, oxygen to her heart would plummet, her heart would stop beating, and her body would be transferred to a funeral home.  Her parents, however, refused to accept that, and promptly went to court, which ordered that the mechanical ventilator be continued until the case could be reviewed in more detail.

Until very recently, for all of human history people everywhere could agree about the difference between a living human being and a dead body, or "corpse".  We used to refer to someone who is alive as "living and breathing", even though those two words were actually redundant.  When someone stopped breathing for more than a few moments, which was usually pretty obvious to everyone around them, they were dead.  When breathing stopped, the body had no oxygen, so the heart, the brain, and everything else was either simultaneously, or very soon, "dead".  The body then rapidly becomes cold (on TV crime shows, just how cold is a common way that investigators estimate the "time of death"), rigid ("rigor mortis"), and (at least for Caucasians) pale/gray as red blood cells no longer flow through and give color to the skin's surface, and family or others then "dispose" of the "corpse".

Change started on May 28, 1908, when doctors showed that a mechanical ventilator could revive a dog who had been "smothered" and stopped breathing, and presumably was "dead" by conventional standards.  The NY Times reported the next day that people "cheered" as the dog then "wagged its tail".  An animal that had stopped breathing was no longer clearly "dead".  

As use of mechanical ventilators became available in the medical care of humans, independent breathing was no longer required for someone to be alive.  With the development by James Elars and Peter Safar of CPR in the 1950's, even someone's heart stopping did not mean their "death", since sometimes the heart could be restarted, and the person revived -- brought "back to life".  Suddenly, a person whose breathing and heart had both unquestionably stopped was not necessarily "dead".

Construction of "Intensive Care Units" in hospitals then followed rapidly, now constituting nearly 20% of all hospital beds in the U.S.  Many of the patients in these units are kept alive with mechanical ventilators supporting their breathing, and with advanced cardiac medications and support systems keeping their hearts beating.  

But in the 1960's, doctors noted that some of these patients had no signs of brain activity, often as the result of prolonged lack of oxygen during a cardiopulmonary "arrest".  Questioning whether these patients should even be considered "alive" led a Harvard committee in 1968 to propose "brain death" criteria for determining that some patients have died, even if their breathing continues because of mechanical ventilation, and their hearts continue to beat.  In 1980, "The Uniform Determination of Death Act" (UDDA) was prepared as a model for state laws (which set criteria for whether someone is alive or dead), in cooperation with the American Medical Association, the American Bar Association, and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.  According to UDDA criteria, now accepted in all 50 states:

"An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead.

By law in California, as in other states, once doctors had determined that Jahi had suffered "irreversible cessation of all functions of the entire brain", she was legally dead.  

But seeing that her heart is still beating, and that her lungs are moving up and down (thanks to the ventilator), and being able to touch her face, arms, and legs and feel that they are still warm (in my experience watching family members, this is particularly powerful) -- to her mother Jahi is still alive.  As she told CNN:

"Her heart is still beating, so there is still life there."

As a matter of basic biological fact, there is still life there.  Not in her brain, but in most if not all of the rest of her young body.  As with other "brain dead" patients, as long as her heart is circulating oxygenated blood to her tissues, all of Jahi's other vital organs (including her heart, her lungs, her liver, and her kidneys) are likely not only "alive", but possibly in such good condition that they are ideal organs to use in transplantation for the benefit of others.  Without the availability of these organs from patients on mechanical ventilators, who have been legally declared "brain dead", most of the thousands of heart, lung, and liver transplants done each year in the U.S. would not be possible.  Many believe that that was a primary motivation for developing "brain death" criteria in the first place.

Biologically, Jahi's body is warm, she urinates and has bowel movements, and if given food (through a tube since she can't swallow without a functioning brain) her body digests it, and distributes the nutrition to literally trillions of living cells.  Just not her roughly 100 billion brain cells (<1% of her body's total cells).  Those are dead.

Even though Jahi herself, like all "brain dead" patients, has no biological possibility of consciousness, now or ever, her "life" has still clearly had profound, ongoing meaning to her family.  One professor of bioethics commented bluntly about her family's views: "There is a word for this: crazy."

I'm not sure what he meant by "crazy".  It is common for family to find it deeply meaningful to spend time with a loved one who is in a profound coma, with no consciousness, and even with zero possibility of ever regaining consciousness.  When I see this in our ICU's, I don't usually see craziness, I see love.  And I suspect that if any bioethics professor ever has a loved one in this condition, then it will not seem "crazy" to be at the bedside holding their loved one's still-warm hand, maybe even never wanting to let go

So with the hospital under a court order not to stop the ventilator, Jahi's family celebrated Christmas.  As her mother remembers:

"It was beautiful, because I didn't think that it was going to happen...to have the whole family come...people brought food...It was a good feeling as a mother and as a family that I could spend Christmas with my child...People sent her gifts from all over the world, and we put them under her tree....I was really happy about that." 

In what seems to me to be almost-Solomonic wisdom, the state judge allowed the hospital and its doctors to act on their belief that Jahi is dead by transferring her body to the state medical examiner -- though still attached to the functioning ventilator.  The medical examiner then followed standard procedure in "releasing" the legally-dead body to the family, though again with the functioning ventilator still in place.  

I do not know where Jahi -- or her "dead" body -- is today, but news reports suggest that her body is now being "fed".  If so, then even though her brain is dead, that nutrition is helping keep the rest of the organs and cells in her body -- including her heart -- biologically alive, even if Jahi herself is legally "dead".

                                                            *     *     *

The one thing I am most sure about in this case is that it is far from as simple as many doctors, lawyers, and "bioethicists" seem to think, especially those who dismissed Jahi's parents' perspectives by labelling Jahi's body as a "corpse", with statements such as "There are no ethical issues in the care of someone who is brain-dead, because the patient is now a corpse", and "you can't...feed a corpse."

Whatever words one uses to describe Jahi's legal or biological status on December 25, 2012, the Christmas that Jahi's mother and her family spent with her -- or, if you prefer, with "her body" -- was clearly a profoundly more human and loving Christmas than they would have spent if it had been a typical "corpse" -- i.e. a body that is visibly lifeless, cold, and stiff, in rigor mortis. 

I have no simple answers for cases like Jahi's.  I hope her family is being helped to come to terms with the painful reality that she will never "wake up" -- not to open her Christmas presents the way her mother has said she hopes, and not to anything else.  I hope that at some point she will have a burial, or perhaps a scattering of her ashes, that helps her family find peace.  

In the meantime, wherever Jahi -- or her body -- is today, I hope it is a place that is as filled with love as the room her mother described on Christmas.

Doctors "Showing Others the Way"? It's Hard for Us, Too

Posted by Dr. Lachlan Forrow December 2, 2013 10:04 AM
The headline in the NY Times -- "How Doctors Die: In Coming to Grips With Their Own Mortality, They Are Showing the Way for Others" -- suggested that maybe doctors are finding it easier than most other people to make sure they are cared for at the end of life the way that they would want to be, including being at home, rather than in an ICU, if that is their preference. 

Instead, what the article made clear is that even for doctors, it is far too hard.

Early on, the article sounds a note of hope:

[Doctors] have a clear advantage over many of us.  They have seen death up close.  They understand their choices, and they have access to the best that medicine has to offer.

But then it became clear that even for doctors, some of the most basic things they need in their care are hard to get, starting with simple prognostic information. 

One of the physicians profiled is Dr. Andy Billings, one of the national pioneers in developing the field of palliative care, and also a longtime master teacher at Harvard Medical School on doctor-patient communication.  (I know this firsthand, as one of his admiring students not only years ago in medical school, but repeatedly in the decades since then.)

It is hard to imagine anyone with more experience and skill than Dr. Billings in talking about what to do in the face of serious illness.  It is hard to imagine anyone for whom it should be as simple and straightforward to obtain the basic information needed to develop a truly patient-centered plan of care.  

And yet even for Dr. Billings, it has been hard:

"As a doctor, you know how to ask for things," he said.  But as a patient, Dr. Billings said he had learned how difficult it can be to push for all the information needed.  "It's hard to ask those questions," he said.  "It's hard to get answers."


But why should it be so hard?  Why should a patient ever have to "push" for the information s/he needs?

Part of the reason, the article goes on to explain, is the continued perversity of our payment systems.  As Dr. Joan Teno, a leading expert on end-of-life care at Brown University, explains:

"We pay for another day in I.C.U....But we don't pay for people to understand what their goals and values are.  We don't pay doctors to help patients think about their goals and values and then develop a plan."


In Massachusetts, clinicians will soon be required by law to offer counseling about end of life options to all patients with a "terminal illness", defined as a life expectancy of six months or less.  But mandating something obviously doesn't guarantee that it will happen, much less happen well.  Especially if doctors are not paid for the time it takes to do it well.

And yet, it IS possible to do this well.  And when a plan of care is solidly anchored in a well-informed patient's goals and priorities, it is possible for the end of life to be just the way the patient wants.  The article ends on a positive note, with the experience of Dr. Elizabeth McKinley, a 53-year-old internist from Cleveland, who had battled breast cancer for 17 years, but had finally had enough of fighting for longer life, and with her family and doctors fought instead, successfully, for a different goal -- making every remaining day as good as it could be.  

And at the end, the article explains:

The front door at Dr. McKinley's big house was wide open recently.  Friends and caregivers came and went.  Her hospice bed sat in the living room.  Since she stopped treatment, she was spending her time writing, being with her family, gazing at her plants.  Dr. McKinley knew she was going to die, and she knew how she wanted it to go.

"It's not a decision I would change," Dr. McKinley said.  "If you asked me 700 times I wouldn't change it, because it is the right one for me."

Dr. McKinley died Nov. 9, at home, where she wanted to be.


"Where she wanted to be."  

This shouldn't be complicated, and shouldn't be so hard.  It should be the way it is for all of us.

Ensuring Patients Know Their Choices -- Patient Family Advisory Councils (PFACs) Can Help

Posted by Dr. Lachlan Forrow October 27, 2013 02:00 PM
Patients with a serious illness cannot possibly make informed choices about their care unless they know the full range of options available to them.  This requires that they know, in an early and timely way, not only about potentially life-prolonging treatments, but also about palliative care and hospice alternatives.

We know that this doesn't consistently happen.  

We also know that many patients with incurable cancer who agree to potentially-burdensome treatments wrongly believe that their disease is curable.  

We also know that many patients who would likely have preferred to spend their last weeks at home are not referred to hospice until the last 3 days of life (if at all).

We know, too, that having early "end-of-life discussions" with patients is highly beneficial for both patients and their surviving family -- better quality of life for the patients, less "aggressive" medical care, earlier hospice referral, and better bereavement adjustment among survivors.  

So efforts to ensure that early communication takes place more reliably is a no-brainer.

In a major step forward toward ensuring that patients with serious illnesses are informed, in a timely way, of the full range of options for their care, the Massachusetts Department of Public Health recently released its initial draft of proposed regulations to implement a new law passed by the Massachusetts legislature last year.  

The new law has two distinct components, one applying to "health care facilities", the other applying to individual clinicians:

The commissioner shall adopt regulations requiring each licensed hospital, skilled nursing facility, health center or assisted living facility to distribute to appropriate patients in its care information regarding the availability of palliative care and end-of-life options. 

If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate for the patient, including, but not limited to: (i) the range of options appropriate for the patient; (ii) the prognosis, risks and benefits of the various options; and (iii) the patient’s legal rights to comprehensive pain and symptom management at the end-of-life. 

The first public draft of the proposed regulations has many good ideas, and helpful suggestions for making them even better are beginning to come in, starting with discussion at the Massachusetts Public Health Council meeting where the proposed regulations were presented.  Major health care organizations and networks, including the Massachusetts Hospital Association, are encouraging their members to submit suggestions in writing, and/or to attend the planned Public Hearing about the regulations on November 21 at 2pm.  

The crucial issue now is not whether to "reach out" -- the first of the "4 R's" of respecting patient's preferences -- to patients with the information they need to make informed choices. Health care facilities and individual clinicians will now be required by law to do that.

The crucial issue is how.

For this, we need the input and expertise of patients and family members themselves.

Fortunately, in Massachusetts we have a wonderful mechanism for this that already exists -- the Patient Family Advisory Councils (PFACs) that, as required by law since 2010, now exist in health care facilities across the Commonwealth.  As stipulated by law (see Section 11/53E here), PFAC's have multiple potential roles:

The department shall promulgate regulations for the establishment of a patient and family advisory council at each hospital in the commonwealth. The council shall advise the hospital on matters including, but not limited to, patient and provider relationships, institutional review boards, quality improvement initiatives and patient education on safety and quality matters. Members of a council may act as reviewers of publicly reported quality information, members of task forces, members of awards committees for patient safety activities, members of advisory boards, participants on search committees and in the hiring of new staff, and may act as co-trainers for clinical and nonclinical staff, in-service programs, and health professional trainees or as participants in reward and recognition programs. 

A "free bonus" of PFAC's engaging actively in helping hospitals (and other health care facilities where they exist) implement the new requirements is that each PFAC is also required by law to submit, by October 1 of each year, a report on its activities that is publicly available.  These reports, compiled and readily available with much additional useful information by Health Care for All, allow health care facilities to exchange ideas and evolving "best practices".   

As Ellen Goodman, co-founder of The Conversation Project, regularly emphasizes, improvements in the experience of childbirth were not driven by doctors and hospitals, and the successful experience of how those improvements happened needs to be applied to the improvements we need in care at the other end of life.  Addressing the lay public, she stresses that the "experts" we need to drive change are not "professionals", they are you:

...This change has to come from the outside in. It comes from known experiences that you are the expert on. You are the expert on your family. You know what happened to your parents, to your siblings and that you have to bring this change into the system.”

The model is similar to how women changed birth a generation ago. The doctors weren’t the ones that said, “Oh, yes please. Bring the video camera into the birthing room. Let’s have babies in a bathtub. Don’t put your feet in the stirrup. Let’s have a warm and engaging lovely event.” It was basically parents, especially women, who said, “This is what’s right. The experience that I had giving birth shouldn’t be that way.” They’re the ones who changed the system from the outside in.

We think the same thing is happening with the end of life experience.

So yes, I hope health care professionals will weigh in for the November 21 Public Hearing on the new regulations.  But what we need most of all -- not just leading up to November 21, but forever after -- is the voices of patients and family members themselves, telling us how they would like to be informed, and then regularly afterward telling us how well we are (or are not) doing.

Engaging Patient Family Advisory Councils is just one tool that can help.  We also need to engage faith communities, disabilities organizations, AARP, and many others.  But since the structure of PFACs already exists, with direct influence on health care organizations "from the outside in", they are a good place to start. 

Wisdom from our Faith Traditions

Posted by Dr. Lachlan Forrow October 14, 2013 09:57 AM
While it often seems that the near-miraculous power of modern medicine to extend life has given us new, unprecedented challenges, many of these challenges are not new at all.  And I was reminded last week how much wisdom we can find in our faith traditions.

I was asked to lead a conversation last week at Temple Israel in Boston about caring for loved ones (and ourselves) near the end of life.  Before I was introduced, my host, Rabbi Ronne Friedman, provided an introduction that included the Talmudic story of second-century Rabbi Judah, the head of the Rabbinic Academy and redactor of the Mishnah, which Rabbi Friedman said "conveys Jewish attitudes with regard to the end stages of life":

When Rabbi Judah haNasi lay dying, the Rabbis decreed a public fast and offered prayers for heavenly mercy. They, furthermore, announced that whoever said that Rabbi Judah was dead would be stabbed with a sword.  Rabbi Judah’s handmaid ascended the roof and prayed: ‘The celestials desire [that] Rabbi Judah [join them] but the mortals desire Rabbi Judah [to remain with them]; may it be the will [of God] that the mortals may overpower the immortals (in other words, at first, she joins with those who pray for his life).  When, however, she saw how often he resorted to the bathroom, painfully taking off his tefillin and putting them on again, she prayed: ‘May it be the will [of the Almighty] that the immortals may overpower the mortals.  As the Rabbis continued to pray incessantly for [heavenly] mercy (their prayers thereby shielding Rabbi Judah from death) she took up a jar and threw it down from the roof to the ground. [For a moment] the astonished rabbis ceased praying, and in the moment that they ceased, the soul of Rabbi Judah departed to its eternal rest.

In this story, Rabbi Friedman explained, "the simple handmaid grasps a truth that eludes the adoring disciples of Rabbi Judah, that is that the preservation of his life at all costs consigns him to an inhumane degree of suffering."

I later heard from a Jewish physician friend two details in a version he had been taught -- the "jar" that the handmaid threw down from the roof was the Rabbi's chamberpot, and it is said that a special place in the hereafter was then reserved for the chambermaid.

As I told the audience at Temple Israel in starting my presentation, this story of the death of a revered leader nearly 1,800 years ago reminds me of realities that take place every day in our own lives.  Substitute dedicated "physicians" for the praying "rabbis", and the new powers of medical technology for the ancient powers of prayer.  Or substitute praying family members for the praying rabbis, pleading to heavenly powers (or to doctors) to "save" the life of a loved one.  

But sometimes all we can "save" the person for is additional suffering.  And sometimes it takes someone who can see through all the prayers, who can see past all the heroic medical efforts, someone who can see clearly the concrete realities of the individual, mortal human being and what she or he really needs from us.   

For Rabbi Judah, that was his chambermaid. For patients today it is sometimes a family member or friend, sometimes a nurse, sometimes a doctor.  It can take deep courage, and deep love, to say "enough".  

As we work together in Massachusetts, and across the country, to ensure that everyone, and everyone we love, receives the care we need and deserve in the last phase of life, I am convinced that we can all -- whether we are secular or believers -- find wisdom in our richly-diverse faith traditions.  And that wisdom will come not only from past or current religious "leaders", like the eminent rabbis in the story, and not only from moral or religious principles. 

Sometimes the greatest wisdom comes from people like the chambermaid. 






The "4 R's" of Respecting Patients' Preferences

Posted by Dr. Lachlan Forrow September 30, 2013 08:00 AM
What will it take to ensure that care near the end of life is always anchored in the patient's own goals, values, and preferences?

It is as simple, and also as complicated, as the "4 R's" of respecting patients' wishes:

Reach out -- we need to ask every patient about their goals and preferences for their care, including who they want to be their voice if they can't speak with us themselves.

Record -- we need to document the patient's preferences clearly in their medical record.

Retrieve -- we need to ensure that those preferences are promptly available at any predictable future point of care.

Respect -- we need to ensure that those preferences are always respected.


A truly patient-centered health system would never fail in any of the 4 R's.  Failure would be viewed as a "serious medical error", especially if a patient was harmed by the error -- whether because s/he suffered in undergoing burdensome interventions s/he would not have wanted, or because we failed to do medically-available and potentially-beneficial things that s/he would have wanted.

My hospital -- Beth Israel Deaconess Medical Center -- has committed itself to eliminating "preventable harm", and holding ourselves publicly accountable for doing so.  We provide regular reports on our public web site reporting on progress (or not) in eliminating such categories of "preventable harm" as preventable hospital-acquired infections, "falls resulting in injury", and several other forms of "harm" that we believe should never happen.  We are exploring the possibility of adding "treatment a patient would not have wanted" as an explicit category of "preventable harm", especially if it involved significant burdens to the patient.  

To guide the development and implementation of systems that will support our staff in eliminating this category of "preventable harm", we have adopted the framework of the "4 R's", which emerged as an idea in the Institute for Healthcare Improvement's "Conversation Ready" initiative that we are participating in.

Each of the "4 R's" raises issues that are far from simple -- some are medical, some ethical, some purely logistical/practical.  And each of them takes resources -- time for doctors to address these issues with patients during medical appointments, time for training of doctors (and nurses) about how to do that, time for doctors in emergencies to find the information they need, and the creation of systems for medical records that ensure that crucial information is always promptly-available.

The complexities are multiple:

For "Reach out": while every adult should be encouraged to designate a "health care proxy", detailed discussions in the doctor's office of goals and preferences for life-sustaining treatments make little sense for most young, healthy patients.  But they are crucial and urgent for patients who are older and sicker.  What conversations should be expected, for which patients?  And for a patient with a serious illness, who should be responsible?  For a patient with cancer, is it the oncologist?  The primary care physician (PCP)?  Both?

For "Record": Beyond documentation of a patient's health care proxy (with contact information), what information, and in what detail, is it essential to record, and where?  When do we want or need a signed written document (such as a MOLST form) from the patient, and when is their doctor's note about a discussion sufficient?

For "Retrieve": In the fast-evolving world of standards for electronic health records (EHRs), what information should be instantly-retrievable, and by whom?  Who is responsible for ensuring this?  Does every primary care doctor's office need systems for scanning documents into the electronic record, or when is it sufficient for the EHR just to indicate that a document exists in the paper record?   What information needs to be instantly-retrievable in some form of state registry, or inter-operable EHRs across institutions, so that when a patient under one system's care arrives in another system's Emergency Department the doctors there will know what to do?  Who should be responsible for (and pay for) creating these systems?

For "Respect": Since it is impossible for any plan to anticipate every possible decision that may need to be made in an emergency, when is it reasonable for doctors in an emergency to  "err on the side of life"?  When is it reasonable for those doctors to conclude that "this patient would not want this" and allow the patient to die peacefully, even though "heroic measures" to prolong ("save"?) the patient's life might clearly succeed?

All of us need a health system that is designed to ensure that the "4 R's" of respecting patients' wishes happen correctly for every adult patient.  As with all "quality standards", to ensure that the "4 R's" happen, our health system needs not only to require (through standards and accountability) that they do, but also to support doctors and nurses in all the tasks that are involved.   

And while it is more complicated than you might think, it is not more complicated than many other things we have figured out how to do once we have decided they are crucial in patient care.

And few things are as crucial to all of us as knowing that, both for ourselves and for everyone we love, surviving family members will be able to look back and say "our loved one was cared for the way s/he would have wanted."


Can Faith Communities Help Us Find Common Ground on Health Care?

Posted by Dr. Lachlan Forrow September 18, 2013 06:14 AM
Almost every story these days about health care reform gives the impression that Americans are deeply, if not hopelessly, divided -- steps toward implementing the Affordable Care Act fight daily with calls to "Repeal Obamacare!", even if that means threatening to shut down the whole government.  

And when the issue touches on approaches to "cost containment", rational conversation seems almost impossible.

But last night a diverse group of Boston-area faith leaders, supported by a standing-room-only crowd of members of their diverse congregations, proved that faith communities have the potential to help us chart a united path forward that our elected political leaders too often seem incapable of finding.

An article about the planned gathering in The Boston Globe, titled "Clergy Push to Curb Health Costs", observed that "The next big movement in Massachusetts health care may come not from the state’s world-famous hospitals or its cutting-edge research labs, but from houses of worship."

When many of us think about diverse religious perspectives on controversial issues, words that often come to mind are "dogmatic" and "divisive".  "Rational conversation" usually does not.

But last night, the Greater Boston Interfaith Organization (GBIO) convened a remarkable, and remarkably honest and rational, discussion at Temple Israel titled Health Care Cost Containment "Interim Accountability" Action.  Participants included health system CEO's from Partners (Gary Gottlieb), Steward (Ralph de la Torre), Boston Medical Center (Kate Walsh), and Beth Israel Deaconess Medical Center (Kevin Tabb); insurance leaders from Blue Cross Blue Shield of Massachusetts (Andrew Dreyfus), Tufts Health Plan (James Roosevelt), Neighborhood Health Plan (Deborah Enos), and CeltiCare (Jay Gonzalez); leaders of the state's Health Policy Commission (Executive Director David Seltz and Commission member Paul Hattis), and the state's Center for Health Information and Analysis (Executive Director Aron Boros).  

A core theme for GBIO leaders is "We are not just consumers" of health care -- this is our health care system, including at the most hard-nosed level of money.  And they are right.

Every dollar in our health care system comes from the people it is (or should be!) designed to serve -- whether through directly-paid insurance premiums, or through taxes paid that provide every penny of Medicare, Medicaid, or other publicly-funded programs, or through employer-based health insurance that ultimately comes out of our paychecks.  Because it is our lives and health that are at stake, and because it is our money, GBIO leaders insist that decision-makers need to understand that they are ultimately accountable to us.

GBIO President Reverend Burns Stanfield began his introductory remarks by expressing deep gratitude for the superb care that a family member has been receiving at a Boston hospital for a serious illness.  But he then held up a thick -- a very thick -- stack of papers, which he explained were the bills for that care.  He expressed gratitude that the bills had been paid by the health insurance he has as a church employee, but admitted that he and his wife had not even tried to understand all the details.  

As Reverend Stanfield then said, "the temptation with something as complicated as health care costs is to leave it to someone else to figure out.  But we can't afford to do that."  Why has GBIO engaged so passionately on this issue?  He gave three reasons:

1. Because it matters.  

This complicated issue of health care costs matters a lot, he said, to all of us: "40% of the state budget goes to health care costs, and if we do not control health care costs, we lose our ability to support education, transportation, public safety, and all of the other things we care about."

2. Because we can do something about it.

Yes, these issues are complicated, he said, and it takes people who are "wicked smart" to understand them.  But, he said, "we are fortunate -- we are blessed -- because in our pews we have amazing leaders who are wicked smart", and building from our faith perspectives, "we have a distinct capacity, and a distinct calling, to do something."  

3. Because success requires accountability

This gathering, he said, was only the first in an ongoing process through which GBIO and other organizational partners will continue to insist on open, explicit accountability for health care cost control -- accountability to the people of the Commonwealth, whose money it is that is being spent.


During the evening, the energy from the overflowing, standing-room GBIO audience was at times almost electric.  On several occasions, whether in response to a Jewish rabbi, or a Christian pastor, or an Islamic imam, the united voices of the diverse interfaith attendees called out in a loud "Amen" to express their agreement and solidarity.  It reminded me of Albert Schweitzer's comment on religion: "Spirit Unites; Dogma Divides".

As I listened, it struck me that all three of Reverend Stanfield's reasons why GBIO is so passionately engaged about health care cost containment apply at least as powerfully to the challenges of ensuring excellence in the care of patients near the end of life.  So I was delighted that my own hospital's leader, BIDMC CEO Dr. Kevin Tabb, explicitly appealed in his prepared remarks to GBIO to help in this area, given the vast sums of money currently spent on caring for people in the last months of life.  He said it would be invaluable if faith communities could take a leadership role in statewide discussions of how we can do better in end-of-life care, including but not at all limited to helping ensure that we are spending our money in this area as wisely as possible.

Amen.



Is Knowing a Patient's Allergies More Important than Knowing Their Goals of Care?

Posted by Dr. Lachlan Forrow September 3, 2013 04:33 PM
Looking at how a health care system identifies and tracks information about patients is one way of telling what information that system considers important.  And despite all of today's rhetoric about the importance of "patient-centered care", the way our systems actually work tells a different, and often disturbing, story.   

And sometimes that story hits very close to home. 

Earlier this year an elderly woman with advanced cancer arrived in our Emergency Department from a nursing facility where she had developed a fever and respiratory distress. She was critically ill, and unable to express her own wishes about what we should do.  The information we had from her nursing facility was that she was "full code", although during a recent hospitalization here her physicians and she had agreed on a "DNAR" (Do Not Attempt Resuscitation) order.  And even though she had been our patient in the past, staff in the ED had no documentation of her having a health care proxy, so they had no one they could clearly turn to to ask what she would want us to do.

So the ED staff did the right thing, given the incomplete and conflicting information they had.  The patient was intubated and started on a mechanical ventilator.  ED staff placed both a central venous line (for medications and blood tests) and a nasogastric tube (for fluids, nutrition, and medications), and they transferred her to our Medical Intensive Care Unit on full life support.

ED staff weren't sure what she would have wanted, so they correctly erred on the side of life. But why was the information about her wishes so incomplete and conflicting, especially when she had so recently been our own patient?  

This kind of problem happens repeatedly in emergency departments across the US -- patients arrive with a major, life-threatening condition, unable to speak for themselves, and immediate, life-and-death decisions need to be made.  But ED staff often don't have the information they need to know how to care for each patient the way she or he would want, even when that patient has been under the care of physicians in the very same health system.

We don't tolerate this for other basic information that we need to take care of someone properly.

If a patient who has been under our care arrives in the ED with a fever, ED staff know immediately whether the patient has any medication allergies.   No medical history is considered complete without this information, and any medication allergies are prominently displayed on the first page of the patient's electronic medical record.  And yes, this patient had two known medication allergies, first identified and recorded a year earlier, then verified again the last time she was hospitalized, and immediately-visible to ED staff the minute she arrived.  Other information our health system considers crucial was also there for ED staff to see immediately, including insurance information -- at a glance they could see that this patient had Medicare Parts A and B, and two different supplemental forms of insurance, each listed with the relevant insurance numbers.

But ED staff had conflicting information about her "code status" ("full code" from the nursing facility, and "DNAR" from our own records).  And there was no immediately-available information at all about her goals of care -- how important, if at all, was living longer to her?  And no immediately-available information about her preferred health care proxy or spokesperson.

As soon as they had time, the doctors in the MICU searched through other parts of her record.  They found notes from her oncologist, both during her last hospitalization here and also during an outpatient visit afterwards.  These notes described in detail the patient's decision not to proceed with chemotherapy, and her understanding that that meant her cancer would inevitably progress and be fatal.  They spoke with the oncologist by phone, who said it was completely clear that the patient would not have wanted the aggressive life support she was currently receiving, and who was surprised and upset that the previous "DNAR" order had somehow not been communicated clearly to the nursing facility.  They found a note in our own records from a month before, documenting that the patient had told one of our nurses that she wanted her son to be her health care proxy, but that note had no contact information for him.  They tracked down her son, who confirmed that he was her health care proxy, and who said that he knew with certainty that she would not have wanted the care she was getting, and that she would want the respirator discontinued.

On Day 3 of her hospitalization the respirator was disconnected.  Any signs of respiratory or other discomfort were treated with morphine, successfully ensuring comfort, as her son said she would want.  She died peacefully a few hours later.

Suppose that when she arrived in our ED, the "allergy field" on the front page of her electronic medical record had been blank.  Suppose ED staff had given her penicillin and she had had an anaphylactic reaction.  Suppose further review of her records here showed that her penicillin allergy was known, but somehow not documented in a way that was promptly available to the ED staff.  

Such a serious medical error would, in most U.S. medical centers today, be considered a "never event", and would immediately trigger a "root cause analysis" to ensure that whatever failure(s) led to the error would never happen again.  

But in most U.S. medical centers today, missing or incomplete or conflicting information about a patient's goals of care, or about a patient's preferred proxy/spokesperson, is the norm.  At Beth Israel Deaconess Medical Center, a major effort is underway to change this, and this patient's care reminded us of how important and urgent it is to succeed.

While having "The Conversation" with our doctor about our preferred goals of care is a necessary step toward ensuring we will receive appropriate "patient-centered care", it is not sufficient.  Our health care systems need to be "Conversation Ready" -- including having systems that ensure that whenever we have clearly expressed our preferences, those preferences will be clearly documented, promptly available at any predictable future point of care, and respected.  

This is at least as important to our care as systems that document our allergies, and our insurance status.












Too Good to be True? An Important Bipartisan Health Care Bill in Congress!

Posted by Dr. Lachlan Forrow August 26, 2013 02:03 PM
Can you think of any health care bill that bipartisan members of today's House of Representatives could join in supporting?

What could possibly unite Tea Party Congressman Reid Ribble (R-WI), who has proudly voted several times to repeal or "defund" Obamacare, and Congressman Jim McDermott (D-WA), a leading advocate of a single-payer health care system?  What common ground could there be for a conservative like Congressman Phil Roe (R-TN), who labels the Affordable Care Act (aka "Obamacare") as a "job destroyer", and Sandy Levin (D-MI), who has condemned Republican efforts to defund the Affordable Care Act as a "blind obsession"? 

All four are among the first 18 co-sponsors of H.R. 1173, the perfectly-named "Personalize Your Care Act of 2013" -- perfectly-named because the name succinctly captures, in precise, accurate, descriptive terms, exactly what the bill intends to achieve.

The bill would authorize several important new steps to ensure that a person's medical care is reliably "personalized" -- i.e. is anchored in the patient's own goals and preferences for care:

1. Allow Medicare and Medicaid to cover "Voluntary Advance Care Planning" Consultations

This would allow a patient and her/his physician (or nurse practitioner or physician assistant) to have a visit every five years, or more often if there is "a significant change in the health, health-related condition, or care setting of the individual", to discuss the patient's "preferences and values", and if desired to incorporate those "into the medical plan, an advance directive, [or] a physician order for life-sustaining treatment."

2. Support development of "Advance Care Planning Standards for Electronic Health Records"

The bill would instruct the Secretary of Health and Human Services to "adopt...standards for a qualified electronic health record with respect to patient communications with a health care provider about values and goals of care, to adequately display...the patient's current advance directive", as well as any "physician order for life-sustaining treatment".

3. Ensure "Portability of Advance Directives"

The bill would stipulate that "An advance directive validly executed outside the State in which such a directive is presented must be given effect by a provider...to the same extent as an advance directive validly executed under the law of the State in which it is presented."


In introducing the bill, lead sponsor Congressman Earl Blumenauer (D-OR) explains (see this wonderful short video clip) how this bill would support things that the overwhelming majority of all Americans already favor, cost nothing, and quite possibly even save Medicare money on expensive, high-burden, hospital treatments that fully-informed patients may choose to forego in favor of time at home.

All that now needs to happen is for Congress to unite behind the bill and pass it this fall, so that it can take effect on the bill's specified effective date of January 1, 2014.  If that seems like a no-brainer, we all need to remember that a similar proposal was derailed in 2009 when Sarah Palin screamed "death panels", even though that outrageously-false allegation was declared "lie of the year" by PolitiFact.comcondemned by AARP as a "gross, and even cruel, distortion...especially for any family that has been forced to make the difficult decisions on care for loved ones approaching the end of their lives", and exposed by Jon Stewart in an unforgettable two-part interview of Betsy McCaughey as utterly baseless.

In 2009 Sarah Palin and her allies won.  Will 2013 be different?  







Is Money The Key To Motivating Your Doctor to Talk to You?

Posted by Dr. Lachlan Forrow August 20, 2013 07:55 AM
Your doctor obviously can only take care of you the way you would want if s/he talks to you about your preferences.  And then the results of this conversation need to be documented in your medical record, so that your wishes are known and readily available to any other doctor who might need to make decisions -- especially if there's a sudden crisis and you have arrived at a hospital, unable to speak for yourself.  

We know that these conversations with your doctor happen too rarely (for patients with a serious illness, anything less than always is "too rarely").  And even when they do happen, they are too rarely documented in a way that is available when and where the information is needed.

But we also all "know" how complicated and difficult this can be, even (or maybe especially) when you are sick enough that you are in the hospital.  We "know" that patients in the hospital are often so focused on the immediate problem, on getting better and getting back home, that they may not want to have "The Conversation" about what they would want if things get worse.  And we "know" that doctors in the hospital are so busy that it's hard to find time before you are discharged to sit down and have "the conversation" with you, much less take the time to write down what they talked about with you, and what you said you would (and wouldn't) want if you got sicker and had to come back.  And if, during this hospitalization, you are now getting better, then everyone has breathed a sigh of relief -- "the conversation" doesn't have to happen right now, it can wait.

And then it often simply doesn't happen at all.

But maybe what we all "know" is wrong.

A provocative new article in JAMA Internal Medicine, titled "Incentivizing Residents to Document Inpatient Advance Care Planning", shows that doing better may not be so complicated after all.

The authors report on the results of a "Housestaff Incentive Program" involving internal medicine residents at the University of California at San Francisco (UCSF).  In this program, medicine residents choose a "quality improvement" project with specific, measurable goals, and if those goals are met then the medical residents each receive a financial reward.  For 2011-2012, the residents chose the goal of "improving documentation of advance care planning discussions", because they recognized that "inconsistent documentation was a barrier to honoring patients' wishes." 

In a nice summary of the study by Paula Span in her NY Times blog, she explains that:

The researchers came up with a standard form, which was inserted in patients’ electronic health records. It asked just a few questions: Does the patient have any “expressed wishes” about how much care he wants or doesn’t? Where are those preferences recorded — in a living will, a durable power of attorney, a P.O.L.S.T. form (which would be scanned into the record). Or are they expressed orally?
 
The researchers’ form requests a brief summary: He doesn’t want to be resuscitated or intubated? She wants a feeding tube but not a ventilator? Or she wants “all available care?” Does he have a designated decision maker? What is that person’s name and phone number, and what language does he or she speak?
 
If residents recorded this information for at least 75 percent of discharged patients, for three of the four quarters in the academic year, they each got a $400 bonus. If not, they didn’t.

The results were dramatic.

From a baseline of 22% "completed fields" at the start of the project (July 2011), rates of completion rose rapidly, to over 90% by October, a level sustained through the end of the project (May 2012).  By comparison, for patients discharged by attending physicians without involvement of medical residents, the average rate of "completed fields" during the year was only 11.7%.

Of course, the project was not just about "money" -- the residents also used many of the basic tools of any "quality improvement" project.  They created simple, easy-to-use fields in the discharge summary where information could be recorded.  They conducted educational sessions about how to use those fields.  Every two weeks they emailed simple charts to all residents providing "feedback data" on how well they were doing.  

And of course many questions still remain -- were the dramatic improvements sustained after the project (and the financial incentives) ended?  Did having this information available in the discharge summary help ensure that subsequent care was reliably anchored in the patient's expressed wishes?  Is it possible to achieve similar results without the financial incentives?

I think it would be a tragic misunderstanding, and deeply unfair to the medical residents at UCSF, to conclude from their project that "at the end of the day, for doctors, it's all about the money". It was not money that led the UCSF residents to choose this project over the countless other quality improvement projects they could have done.  It was not money that led them to do all the work involved in creating the user-friendly systems that made documenting patients' wishes so much easier.  It was not money that led them to do all of the educational outreach, and provide the concrete "feedback data" to their fellow residents about how they were doing.

The UCSF residents were clearly troubled by finding themselves working in a health care system that is not designed to ensure that each patient's wishes are known and respected. So they decided to change that, and very quickly achieved dramatic improvements.  Yes, they used financial incentives as part of the motivation for their colleagues.  But "at the end of the day", I suspect their greatest reward was not the money at all -- it was knowing that they had helped improve the care of their patients, and made it easier for other doctors to do the same.

But let's find out -- all we will need is another group of energetic and motivated medical residents at another medical center, who try to replicate the UCSF success, but without a year-end cash payment being the reward.  I'm willing to bet (a cup of coffee, not money) that some group of medical residents will soon try that, and succeed.





"What if it was YOUR mother?"

Posted by Dr. Lachlan Forrow August 12, 2013 09:19 AM
End of life decision-making can be agonizingly hard, especially when we haven't had "The Conversation" with our loved one.  

But sometimes it is remarkably easy to figure out what Mom would (and wouldn't) want, even if it's now too late to ask Mom herself.  And often the answer emerges most clearly when we stop thinking in terms of the specific medical "questions" we seem to be facing -- "If Mom's heart stops, would she want CPR?"  or "Would Mom want to be kept on the respirator?"  The crucial issues aren't, in fact, usually "medical" -- the crucial issues are usually about Mom herself, Mom as a person.

One of our medical residents at Beth Israel Deaconess Medical Center (BIDMC), Dr. Haider Javed Warraich, recently conveyed this beautifully in an essay for the NY Times titled "If This Were Your Mother, Doctor...".  He describes a recent "family meeting" he participated in, in one of the medical intensive care units.  The patient was an elderly woman, admitted to the MICU just a few hours earlier, after requiring "intubation" (ie, being placed on a mechanical ventilator), which was now keeping her alive.  After an initial discussion about the complex medical issues with the patient's two daughters and her son, Dr. Warraich writes that:

The son, quiet for most of the meeting, broke the silence and, with a hint of anger and a big dollop of frustration, asked the one question I had dreaded being asked the most: “Doc, give it to me straight. If this were your mother, what would you do?” 

Fortunately, Dr. Warraich understood that the issue he was trying to help this family with was not about his own mother, but was about their mother.  So instead of talking about his own mother, he paused and then simply responded, "Tell me more about your mother.”

And then, slowly, the family started sharing stories of the woman we had met only a few hours before, unconscious and intubated. She loved being independent, would hate for people to open doors for her or hold her hand as she tried to get up, they told us. She loved the sun, the beach. She loved walking, loved being out and about. She would never, ever want to go to a nursing home. Never ever. They pulled out a picture of her lounging on a chair, sipping lemonade.

We then told them that based on a combination of her vital signs and lab values, as well as our clinical judgment, that while we could hope for some progress, it would likely not be enough to allow her any real shot at experiencing life outside a nursing facility again.

The daughters shared another glance with their brother. Their shoulders were now less tense, their eyes less teary. The room seemed to be filled with memories of a woman who had lived life well. They turned to us and asked us to make her comfortable, and to turn off the breathing machine. 

I hope that Dr. Warraich's wisdom is read widely by doctors and nurses, who are so often asked "What if it was YOUR mother?".  But his reflections about how to respond to this question are just as relevant to anyone who is asked a similar question by a friend or neighbor, which sooner or later may be most of us. 

Albert Schweitzer's Legacy -- A Centennial Beacon of Hope

Posted by Dr. Lachlan Forrow August 6, 2013 01:04 PM
Most of these "Mortal Matters" blog entries have focused on the challenges of acknowledging and dealing with the inevitability of our own mortality, and the inevitable mortality of everyone we love.  But sometimes it is our acceptance of people's deaths that is the problem -- especially when their deaths are both tragically premature and readily preventable.  

According to the World Health Organization (WHO), millions of people die each year of readily-preventable causes, including the vast majority of the 6.9 million children who die before they reach their fifth birthday.  Over 1.5 million people still die each year of HIV/AIDS, one million of tuberculosis, 300,000 of malaria, and 280,000 women of complications of pregnancy and childbirth.  Almost all of these deaths are in low- and middle-income countries, and almost all are preventable.  

It doesn't need to be this way.

Last month, hundreds of people -- including Nobel laureates, physicians and scientists, representatives of the WHO, the World Bank, UNESCO, and others -- gathered in Africa to celebrate the Centennial of the Albert Schweitzer Hospital in Lambarene, Gabon, founded in 1913 by Dr. Schweitzer (1875-1965) and his wife and soulmate Helene Breslau (1879-1957). Hosted by Gabon President Ali Bongo Ondimba, the Albert Schweitzer Centennial Symposium and related events culminating in an ambitious "Lambarene Declaration", launching a renewed commitment to furthering Dr. Schweitzer's legacy of service to all in need, not just in the Lambarene Region, but across Africa and beyond.  

albert_schweitzer centennial logo.jpg
Visitors toured the nearly-completed campus of the new Albert Schweitzer International University Center for Research and Health that President Ali and Gabon have constructed adjacent to the grounds of the Albert Schweitzer Hospital.  The new Center will serve as a coordinating hub for international collaboration to end not only the "Triple Epidemic" of HIV/AIDS, TB, and malaria in Africa, but also the unconscionable daily toll of preventable maternal and child deaths.  Expanded training and support of African scientists and health care workers will be the top priority, pursued through the creation, at the new Albert Schweitzer International University Center, of a School of Public Health, which will include use of modern global communications to make web-based curricula available at little or no cost to students across the continent. 

The Schweitzer Centennial Symposium's rich program of speakers and panelists was webcast live across the world, watched by over 6,000 people in more than 40 countries, with all sessions remaining available on-line.  

I suspect that Dr. Schweitzer would be as pleased as he would be surprised that his Hospital has survived so long after his death, and that it continues to serve as such a powerful symbol of human solidarity, and as a beacon of hope to the world.  But I am even more confident that he would say that all that really matters from events like the recent celebrations is that they spark renewed efforts to prevent and relieve suffering, and to avert premature deaths, wherever they occur.

Today, none of us need to travel to Africa, as Albert Schweitzer and Helene Breslau did, to make a difference in the lives of people who need us.  Nor need we all focus on far-away places.  In almost all of our own local communities, and even within our own families, we can think, if we try, of people we could do more to help -- and perhaps, like Schweitzer, find deep satisfaction when we actually do.  

When we succeed in doing so, we may find that we are actually granting ourselves one of our own deepest "end-of-life wishes" -- to be able to look back when our own mortality looms, and be glad about some of the things we did with our time.

Helping people understand end-of-life choices -- are pictures better than words?

Posted by Dr. Lachlan Forrow June 24, 2013 05:00 AM
To ensure that for patients with a serious, advancing illness I am caring for them the way they would want me to, I need to know that they understand their choices, including what may lie ahead for them if they choose X or Y.

While that is so obvious that it may hardly seem worth saying, the truth is that in medicine we are much clearer about the "theory" of "informed consent" than we are about the practice. 

Even for the most skilled clinicians, it can be hard to be sure that a patient really understands what a procedure involves, or what life in different conditions might be like.  Would I want life-prolonging medical interventions if I had "advanced dementia"?

Our own personal experiences are extraordinary powerful, but can be extremely misleading -- one person's beloved relative with advanced dementia may have been happy and often a delight to be with, another's may have been trapped in an often confused and agitated hell that none of us would ever want to live in.  While clinicians can try to explain what might be ahead in words, it is often simply impossible to convey an understanding of what life in X or Y condition would be like.

That is why a very different approach, one that uses videos as a central tool for patient education, seems so promising to me.  One of the visionary pioneers of this approach is Dr. Angelo Volandes, whose work was recently featured in The Atlantic magazine, in an article titled "How Not to Die: Angelo Volandes's low-tech, high-empathy plan to revolutionize end-of-life care."  I have known Angelo for almost 20 years, first as a gifted student, and more recently as an admired colleague.  He is on to something very, very important.

Samples of some of the videos can be found on the website of the nonprofit foundation Angelo has created to support this work, Advance Care Planning Decisions.  Some involve videos of real patients, such as a woman with advanced dementia, trying to show what it is really like for them.  Others involve videos about what medical interventions are like (eg CPR, or "intubation"), showing with a mannekin exactly what is involved.

I have countless questions about the videos, as Angelo knows -- are they really fair presentations, or are they biased (making something look worse, or maybe less bad, than it usually is)?  For videos showing people with advanced illness, in states that I would be embarrassed to be seen in, how do we ensure that the videos are done with true respect for the people being seen?  Is it enough for a family member to give consent?  When you see the videos, you will have questions or comments, too.  

But my own experience looking at the videos is that they give me an understanding of things I want and need to understand, in order to make informed choices, that words can rarely, if ever, achieve.

This approach is still early.  We need many more people like Angelo making many more videos, and posting them on the web for comments and feedback.  We also need many more people using other approaches -- through writing (fictional and nonfictional), through art, and in other creative ways -- to help us understand what different medical choices might mean.   We need ways to finance the production and wide dissemination of high-quality tools that help us make good decisions, as organizations like Angelo's and the Informed Medical Decisions Foundation are trying to do.

No one's understanding can ever be truly complete -- no "consent" is ever perfectly "informed".  But we can do a much, much better job than we usually do today, and video and other tools can help us.




Reverence for Life, Shared Humanity, and Hope

Posted by Dr. Lachlan Forrow April 23, 2013 11:56 AM
The news of the Marathon Day horrors in Boston reached me in Lambarene, Gabon, where exactly 100 years ago this month Dr. Albert Schweitzer and his wife Helene Breslau arrived to open the African "village hospital" that gained him fame throughout the world.

Having learned of the relentless, daily suffering of fellow human beings in Africa with no access to the fruits of modern medical science, Schweitzer had left behind extraordinary successes in Europe (in philosophy, theology, and music) to start medical school in 1905 at the age of 30, so he could devote his life to more direct, tangible service than he had found possible as a scholar, pastor, and organist.  

He decided, he told others, "to make my life my argument."

After their arrival in Lambarene, part of French Equatorial Africa, in April 1913, he and Helene, who had trained as a nurse, saw nearly 2,000 patients in the first year alone.  But in 1914, a massive war broke out in Europe. What did this have to do with his medical work thousands of miles away?  As German citizens in a French colony, they were declared enemies, placed under house arrest, and the hospital was closed.

Schweitzer fell into despair, not just about being prevented from doing the medical work that was so desperately needed, but also about European civilization.  The scientific and technical advances borne of the Enlightenment were not being used to build a more humane world, but exactly the opposite -- to construct and use weapons of massive destruction, with which fellow Europeans were now slaughtering each other by the thousands.  He searched his books of Western philosophy and theology for some missing answer, some moral basis for civilization that would have more traction than the abstract philosophy of Kant and others, which clearly had failed.

One day, in a boat out on the majestic Ogooue River that flows through the Lambarene region, captivated by the overwhelming beauty of the surrounding life-filled tropical rainforest, struck in awe by the power of a herd of hippopotami he passed, and yet deeply aware of the vulnerability of life in its many forms, suddenly the phrase Ehrfurcht vor dem Leben -- "Reverence for Life" flashed into his mind.  He had found his answer.

Each of us, he came to believe, is born with a natural capacity to experience and express a profound Reverence for all Life that we find around us.  And when we act on that capacity, reaching out to help life that is vulnerable, in danger, or suffering, and succeed in making a difference to that life, we experience the deepest satisfaction available to us as human beings.  While different moral and religious teachers and traditions -- from the Buddha to Jesus -- use different language to describe this reality of human nature, Schweitzer believed that our shared capacity to experience and express a Reverence for all Life provides the universal basis of all true ethics.  

Yes, Schweitzer knew, we also have many other capacities, including a capacity unique in nature to engage in wanton slaughter of innocent lives around us.  Schweitzer was skeptical of most attempts to "explain" this evil.  I doubt that any of us will ever adequately understand what led two brothers last week to engage in such horrors.

Ultimately, Schweitzer concluded, the only response that matters is for each of us to do what we can to affirm life, through concrete, tangible actions that help where we can.  The fundamental challenge of civilization, Schweitzer believed, is to find ways to consistently nurture and cultivate a Reverence for Life in everything we do.  Most, if not all, of the world's most pressing problems are a result of our inadequacies in doing so.  And each of us has a role: a parent comforting a frightened child, one neighbor helping another, a teacher with a student -- these countless small, often largely-unnoticed acts of caring add up to more than any dramatic acts of a celebrated few.  

Countless Bostonians last week -- in their families, in their neighborhoods, in their workplaces, and beyond -- responded to the horrors by caring for each other in ways that should give us hope for humanity.  These even included some who came face to face with the brothers who had terrorized the city -- the doctors and nurses who responded to each brother as he was brought to the hospital.  As Dr. Richard Wolfe, head of Emergency Medicine at BIDMC, explained to the media, doctors and nurses are trained to respond to any life in danger with the same, unequivocal life-affirming dedication, whether the life in danger is that of "a perpetrator", or the President of the United States.

Over the past week, it was natural to wish we lived in a better world -- a world more fully anchored in a reverence for all life.  Sitting here in Lambarene, on the bank of the Ogooue River thousands of miles from family and friends in Boston, I am reminded that Schweitzer fully believed such a world is possible, if and when each of us, in our own way, each day, does all we can to help build it.




Still haunted by a grandmother's suffering

Posted by Dr. Lachlan Forrow April 1, 2013 03:37 PM
"The end of my grandmother's life proved to be a nightmare", wrote Janet Lynch Schuster in yesterday's New York Times "Sunday Dialogue: Choosing How We Die", clearly still haunted by the way her grandmother died nearly 20 years ago.  

Why was it such a "nightmare"?

"Her physicians could not treat her intractable cancer pain.  I would have done anything to end her suffering, but hadn't the means or the knowledge", writes Ms. Lynch Schuster, who then goes on to observe that "Legal 'aid in dying' might have spared her such overwhelming pain..."

It was unconscionable even 20 years ago that anyone's grandmother had doctors who could not control her pain.  The right dose of narcotics for a dying patient is the dose that controls the pain, no matter how high, and doctors who do not understand this are not competent.  In difficult cases where narcotics are inadequate, recent advances in pain management give us other effective options, including deep sedation of patients if required to relieve suffering and ensure comfort.

The possibility that a patient might prefer suicide (whether physician-assisted or not), simply because s/he does not have access to clinicians who can reliably prevent or alleviate their suffering, should haunt, unite, and mobilize us all, regardless of our views on legalizing so-called "aid in dying."

I opposed the Massachusetts ballot initiative last fall that proposed legalizing physician-assisted suicide.  This was in part because I believe that a moral prerequisite to legalizing "assisted suicide" is ensuring that all patients have reliable access to other basic palliative care options, including skilled treatment of pain and other causes of suffering.

Fear of unbearable future suffering is itself a tragic source of suffering for far too many patients today.  It is true that having a lethal prescription at hand can take that fear away, as Betty Rollin wrote in response to Ms. Lynch Schusters's "Invitation to Dialogue":

...Many people in Oregon and Washington, where one can legally die with the help of a physician, get the lethal medication and wind up not using it.  They don't need to.  They have what they need without actually taking the final step: peace of mind, a sense of being in control."

For the overwhelming majority of patients, "peace of mind" about whether suffering will be adequately addressed is achievable by ensuring the prompt, universal availability of skilled palliative care.  Nonetheless we do know, based on the experience in Oregon, that a very small minority (roughly 2 out of every 1,000 patients) will still choose assisted suicide.  So we should continue to debate that issue.

But there should be NO debate about the urgency of ensuring that NO terminally-ill patient ever suffers the way Ms. Lynch Schuster's grandmother did.  We all know that this still happens.  And it will continue to happen until our health system starts being held accountable for making skilled palliative care services promptly available to all patients who might need them.

Faith communities are among the partners who could take the lead on this, especially (but not only!) those who oppose letting anyone have the option of physician-assisted suicide.  For example, as Father Myles Sheehan, currently leader of the New England Province of the Jesuit Order, said years ago in a U.S. Catholic interview,

Catholic leaders...need to lay down the law about standards our church has set for care at the end of life...Bishops should say, "I will take very seriously cases of untreated pain as a violation of Catholic ethical guidelines.  Dying in untreated pain is an offense against God and against humanity."


Amen.






A Father's Last Days, the Way He Would Have Wanted

Posted by Dr. Lachlan Forrow March 25, 2013 03:51 PM
It took a village, my BIDMC colleague Dr. John Halamka wrote in his blog Life as a Healthcare CIO earlier this month, expressing his "Thank You to the Village" as he concluded a deeply-moving series of reports from the front lines of a family crisis, which began in the middle of the recent blizzard in Boston:

On Friday at noon, I received a call from my father's cardiologist that I should fly to Los Angeles urgently -- "your father has had his third heart attack, his heart is pumping at half its usual volume, and the combination of multiple medical problems requires rapid decision making."

20 inches of snow had fallen in Boston on Friday morning, delaying and canceling many flights.

The beginning of Spring break meant that just about every Friday flight was oversold to reveling college students...

John's success in somehow getting a flight to LA that night was good luck.  The fact that he and his family were at least partly prepared for the crisis was not luck, it was good planning:

Given everything that happened in 2012 -- Kathy's breast cancer, my mother's broken hip, and health issues with my father in law, I declared a family goal to have all wills, trusts, powers of attorney, healthcare proxies, and an open discussion of care preferences by the first week of March.  My parents and I worked through a review of their legal documents, an inventory of their preferences, and an accounting of their assets in mid-February so we were well prepared for Friday's events.

As John finds when he arrives at the hospital, "[My father] knows I am here but cannot converse.  Today would have been too late to have discussions about his care preferences."

Having had those discussions before it was too late meant that John and his mother knew with confidence that his father would want to "avoid painful, invasive, or aggressive care at a time when his multiple medical issues have combined to make his health decline irreversible."  But many specific questions still had to be dealt with -- "Given his low hematocrit, do we give him blood?...Do we give him IV fluids" -- with several decisions that were not clear or obvious at the beginning of the process.  Thanks to the skilled help of compassionate staff at the hospital, John and his mother were able to deal with all of these, knowing with confidence that they were being faithful to the overall approach John's father would have wanted.  

I urge you to read through each of John's entries, since they so beautifully and richly describe an experience that many, if not most of us, will one day go through.  And as John so clearly helps us appreciate, it was not just a matter of trying to make the right medical decisions in the hospital.  For example:

How do you find ways to celebrate a loved one's life, when you are holding his hand knowing that he is dying?

What about when the moment of death comes, and there is suddenly lots and lots more to do?

In John's first entry, before he knew what was going to be ahead, he wrote that:

It's an awkward time to post a blog, but if my journey over the next several days with my father encourages others to prepare for these events...my father's life will have made an even greater impact.  Making a difference is a great legacy.

John's gratitude in his closing "Thank You to the Village" includes his family, their friends, staff at BIDMC who covered all his meetings and phone calls, and many other colleagues.  He cites three "lessons learned":

*Family must come first
*There is no work related urgency that trumps a focus on major life events
*The people who surround you in life make all the difference

I would add, in my own thanks to John and his family, a fourth:

*We can never be fully prepared, but if enough others who have been there first have shared their stories, then when it comes our turn we will get through okay.

Thanks, John.  


When in Doubt, Try to Save a Life

Posted by Dr. Lachlan Forrow March 11, 2013 06:00 AM
What would you do if a frail elderly woman collapsed nearby?  Would you rush to start CPR?  Or if you don't know CPR, would you scream for help from someone who can?

That's not what happened last week when Lorraine Bayless, 87, collapsed at her independent living facility shortly after lunch in the dining room there.  What happened after a staff member of the facility called 911 was horrifying:

Bakersfield fire dispatcher Tracey Halvorson pleaded with the woman on the other end of the line, begging her to start CPR on an elderly woman who was barely breathing.

“It’s a human being,” Halvorson said, speaking quickly. “Is there anybody that’s willing to help this lady and not let her die?”

The woman paused.

“Um, not at this time.”

On a 911 tape released by the Bakersfield Fire Department, the woman on the other end of the line told Halvorson that she was a nurse at Glenwood Gardens, a senior living facility in Bakersfield. But on Tuesday, the nurse refused to give the woman CPR, saying it was against the facility’s policy for staff to do so, according to the tape.

Later news reports included reassuring comments from Lorraine Bayless's family, indicating that she would not have wanted CPR initiated.  They explained that she had chosen to live in a facility without medical staff, and that "it was our beloved mother and grandmother's wish to die naturally and without any kind of life-prolonging intervention."

Nonetheless, criticism of both the nurse and the facility has, quite correctly, been widespread, and the event has triggered calls for reviews of policies in our nation's facilities:

The nation's largest trade group for senior living facilities has called for its members to review policies that employees might interpret as edicts to not cooperate with emergency responders.

"It was a complete tragedy," said Maribeth Bersani, senior vice president of the Assisted Living Federation of America. "Our members are now looking at their policies to make sure they are clear. Whether they have one to initiate (CPR) or not, they should be responsive to what the 911 person tells them to do."


It is almost impossible to believe that CPR would not have been started immediately if the Lorraine Bayless was 27, or even 57.  And while we know that many 87 year old women would share Lorraine Bayless's wish to "die naturally", we also know that some don't.

In the Emergency Department at my medical center, this issue arises almost daily -- should we initiate CPR for a patient whose wishes are unknown?  What if s/he is 87?  97? What if s/he obviously has a terminal illness and will die soon anyway?  

If a patient's wishes are truly unknown, our own practice is unequivocal: even for a patient who will likely die soon anyway we err on the side of life.  This isn't just because as doctors and nurses saving lives is so important to us.  It is also because death is irreversible. If we ever mistakenly allow someone to die when we might have been able to keep them alive, we cannot reverse the error.  Even a frail 97 year old, or a patient with a clear late-stage terminal illness, might want heroic efforts in the hope of seeing a soon-to-be-born baby, or having one final visit from a cherished loved one.

There are two, and only two, limits to this: (1) CPR should not be attempted if there is no realistic possibility that it might succeed; and (2) CPR -- or any other burdensome intervention -- should not be attempted if it would be clearly inhumane, defined as causing suffering or other burdens that are grossly disproportionate to any realistic medical benefits.

Of course, it would be far better if a person's wishes were clear, which is why conversations with loved ones about our wishes are so crucial -- now, not later, because "it's always too early until it's too late."  And why some people wear medical alert bracelets with "DNR" guidance (note that the rules about these vary from state to state).

But when there is any reasonable doubt, we err on the side of life.  And staff in senior living facilities, as well as any of us who is ever a bystander when someone collapses, should do so as well.

About the author

Lachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »

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