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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.
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About the authorLachlan 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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