Hospitals in Los Angeles County spend more on often-futile care for elderly patients at the end of life than medical centers elsewhere in California, according to a groundbreaking study to be released today.
...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."
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."
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...
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.
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.
*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
*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.
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."
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.
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."
But what if the patient is your own mother?
Chronically ill Medicare patients stayed in the hospital longer, saw more doctors and received more intensive-care treatment in Los Angeles than in other metropolitan regions, including Sacramento, San Francisco and San Diego, according to research by Dartmouth Medical School. There was no evidence that the care prolonged patients' lives.
Indeed, the aggressive care in hospitals might actually have hastened their deaths, the authors said, based on previous studies showing that hospitalizations can lead to infections and other deadly complications."It is at least equally plausible that people are being harmed by overuse than that they're benefiting ... and we know that they're spending a lot more money," said Dr. Elliott S. Fisher, a Dartmouth professor and one of the study's authors.
But couldn’t my mom beat the odds? Harriet Ornstein was a feisty woman. At age 70, she had overcome adversity many times before. In 2002, weeks before my wedding, she was mugged in a parking lot and knocked to the pavement with a broken nose. But she was there to walk me down the aisle — black eyes covered by makeup. She had Parkinson’s disease for a decade, and in 2010 she suffered a head injury when a car backed into her as she walked down a handicapped ramp at the drugstore. Mom persevered, continuing rehabilitation and working to lead as normal a life as possible. Might she not fight through this as well?
If more tests could be done, my dad reasoned, we should do them. My sister and I agreed.
On Friday morning, the final test result came back. It was bad news. In a sterile hospital conference room, a neurologist laid out our options: We could move my mom to the hospice unit and have breathing and feeding tubes inserted. Or we could disconnect the ventilator.
We decided it was time to honor my mom’s wishes. We cried as nurses unhooked her that afternoon. The hospital staff said it was unlikely that she would breathe on her own, but she did for several hours. She died peacefully, on her own terms, late that night — my dad, my sister and I by her side.
I wondered how our thinking and behavior squared with what I’d written as a reporter. Did we waste resources while trying to decide what to do for those two extra days? If every family did what we did, two days multiplied by thousands of patients would add up to millions of dollars.
“You never need to rush the decision-making,” he told me. “It should always be about making the right decision for the patient and the family. . . . We have plenty of money in the U.S. health-care system to make sure that we’re supporting families in coming to a decision that they can all feel good about. I feel very strongly about that.”
Plenty of money? How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren’t known and cases where doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.
“I don’t think the best care possible always means keeping people alive or always doing the most aggressive cancer chemotherapy,” he said, “when the evidence would say there is virtually no chance for this particular agent to make a difference for this patient.”
Mrs. M. found herself at home, unable to breathe. Her husband call 911 and she was rushed by ambulance to the emergency room. As her shortness of breath worsened, all she could say was "help me." The medical team immediately jumped into action ordering blood work and a chest X-ray, placing an IV line and administering antibiotics. Eventually, anesthesia was called to insert a breathing tube and Mrs. M. was placed on a ventilator...
On several occasions, she explained to this nurse that she had no desire to be place on a ventilator again, as she had been so many times in the past. The next time her lung disease worsened, she wanted medicines so that she would not feel the awful sensation of 'air hunger' that accompanied her severe shortness of breath...
A recent op-ed in the NY Times by Dr. Ezekiel Emanuel, titled "Better if not Cheaper Care", reminded me how tragically misguided it is that so many discussions of care near the end of life focus on costs. As Zeke so clearly stresses, and as we underscored in the Report of the Massachusetts Expert Panel on End-of-Life Care, the central issue -- I would say the central moral issue -- isn't cost, it is patient-centered quality. It is unconscionable that our health doesn't take the quality of care near the end of life as seriously as it should -- with the single most important "quality measure" being whether the care provided was what the patient really would have wanted.
Money is, of course, an important dimension of everything in health care, and a legitimate concern. But the most fundamental and urgent "money issue" -- in all of health care, not just at the end of life -- has nothing to do with so-called "rationing" of expensive but beneficial medical interventions. The urgent money problem is that we are so often spending so much money on things of little or no value to the patient, and sometimes on things that are foreseeably harmful. In the last phase of life, this sometimes includes vast sums on expensive, often highly-burdensome, and often ultimately ineffective interventions. The worst of it is when patients and their families would not even want these interventions, if they knew about and had better (and much earlier) access to other options, ones focused on palliative care and hospice, and maximizing time at home.
A disturbing article documenting this problem appeared in the NY Times a few years ago, with a front-page quote from the CEO of UCLA medical center, who said -- apparently with pride -- that 'If you come into this hospital, we're not going to let you die." So I checked, since I suspected that even there human beings are mortal. In fact, over 1,000 patients die every year in his hospital.
Part of the problem is that doctors and hospitals get paid far, far more for intensive hospital-based care than they would if they referred a patient to hospice. So in today's fee-for-service system what often ends up happening?
As I wrote in a letter that the NY Times published:
Dr. David T. Feinberg, chief executive of the U.C.L.A. Medical Center, promises that if you go to his hospital, "we're not going to let you die." Why would a well-intentioned doctor say this to potential patients, violating the most fundamental ethical standards of informed consent?
Guaranteeing hospitals and doctors almost limitless Medicare dollars for intensive-care interventions, however burdensome and unlikely to succeed, may be a quintessentially American affirmation of the sanctity of life -- even if the same resources could be improving the education of our children.
But today's Medicare rewards dishonesty about death. Since the vast majority of Americans would prefer to die peacefully at home, this deprives patients and families of the possibility of informed choice about their last sacred moments together. This is un-American and worse than expensive -- it is morally unconscionable.
The 2009 article about UCLA included a patient care story that I wish I could say wouldn't happen here in Massachusetts, but I know it does:
Dr. Bruce Ferrell, who helps lead the palliative care program [at UCLA], recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. "He had never, ever been told that he would have to live with a ventilator and dialysis," Dr. Ferrell said. "He was never told that this is as good as it's going to get."
Dr. Ferrell talked with the patient about whether he might want to leave the intensive-care unit to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.
"We do not use the h-word" -- hospice -- "on my patients," the surgeon told Dr. Ferrell. "Don't ever come back."
Massachusetts has led the nation in health care reform, with much work still to do. Currently a major focus is "cost control". But money must never be the first concern. First, middle, and last, we need to ensure that every penny is used only for things that are truly of value to the patient.
The patient chose to leave.
Payment for medical services requires adequate documentation that they are based on the well-informed wishes of patients (or appropriate surrogates), including understanding of life-prolonging and palliative care or hospice alternatives.
Why would you pay for medical services unless you knew that they were what the patient wanted?
Last weekend a patient of ours at BIDMC died in one of our ICUs. She was young (early 60's), with complications from major surgery, kidney failure, and multiple infections. As sad as it was - especially for a deeply devoted brother -- when it became clear that her impending death was inevitable, I was struck by how at peace everyone felt. Very sad, but at peace.
In part it was because, thanks especially to her brother, everyone knew that we were taking care of her the way she would have wanted. She and her brother had spoken openly over the years of her illnesses -- they had had "the conversation" regularly, as her illnesses evolved, and so he never had any serious doubt about what she would be thinking. Whenever she wasn't able to speak for herself, he was able to be her "voice", with confidence. Not long before she died he refused, on her behalf, one more round of surgery that the doctors were willing to do.
The usual way of describing this is that we "respected" her wishes, which we did.
But I don't think that the word "respect" deeply enough captures the way she was treated, or even what our goal should be as professionals caring for patients, or as family members seeking care for our loved ones.
Albert Schweitzer had a different word -- Ehrfurcht in German -- that we translate in English as reverence. He believed that all true "ethics" is anchored in our capacity as human beings to experience and then express a reverence for the lives we find around us.
I once heard Naomi Tutu (Nobel Peace laureate Desmond Tutu's daughter) explain the difference between Dr. Schweitzer's idea of "reverence" and the more common moral language of "respect" and "rights". When someone has "respect" for me and my "rights", she said, there's a kind of distance between us. When someone has "reverence" for me, she continued, they are engaged, they care deeply, we are connected in a way that "respect" for me and my "rights" doesn't capture.
Decisions about "life and death" can be almost overwhelmingly complex. Our failures to save a patient's life, or return them to health, can be almost overwhelmingly sad. And yet after all the complexity, and amidst all of the sadness, there is something deeply gratifying when each of us -- family and professional caregivers -- can look back and say: "she was cared for with reverence."
As we gather this week with loved ones, I suspect that few of us have on our “wish list” a conversation about “death and dying.”
But I also suspect that not a single one of us ever wants to be in the position of having to make a major medical decision on a loved one’s behalf, but have no idea what the person we love would want us to do. Nor does any of us want any loved ones to be in that nearly-impossible position for us – which will likely happen if one day they have to make a major medical decision about us, but we have never told them what we would want them to do.
But somehow we still manage not to talk about it. We don’t even talk to our own doctors – a Massachusetts AARP survey found that only 17% of respondents had ever spoken with their physicians about their end-of-life preferences.
This needs to change – but how?
Sometimes a little bit of humor can help.
Since 1999, at Beth Israel Deaconess Medical Center, we have organized a “Talk Turkey” program each year during the days leading up to Thanksgiving. We first did this in partnership with the Massachusetts Medical Society, using wonderful materials that they provided, which we have since adapted. Each year, staff at tables outside each cafeteria, and in other high-traffic areas, sit by posters with variations on the theme of “It’s Time to Talk Turkey”, handing out information about “advance directives”, and copies of the standard Massachusetts Health Care Proxy form. The form is simple – no lawyer needed – and anyone over 18 can give full legal authority to the person they would want to make medical decisions on their behalf, if it ever becomes necessary.
Every year we distribute over 1,000 Massachusetts Health Care Proxy forms to staff and visitors. Every year, a growing number of people who pass the tables say they don’t need one this year, because they got one (or several) from us in the past. Some even tell us that they and their loved ones have talked about the issue since last year, completed the form, and given copies to their physicians.
Of course, the point is not the form itself, it is the conversation that the form is designed to trigger. The hardest part of “the conversation” is getting started. For people who have stopped by one of our “Talk Turkey” tables, we suggest that one way is simply to say:
“Do you know what they were doing at my hospital this week? Something called “Talk Turkey”… I realized that I’ve never told anyone what I would want if I was ever very sick…”
Some people find, when they are remembering together a family member who has passed away, that it is natural to think about the last phase of that loved one’s life. Was it approached the way s/he would have wanted? What would each of us want for ourselves? How can we make sure our loved ones know?
This year, a conversation could start about why the Question 2 debate about proposed legalization of physician-assisted suicide gained such high profile, even though we know from Oregon that only 2 out of 1,000 people choose that option. It’s obvious that there is intense and widespread interest in what the last phase of life may be like. So a conversation about Question 2 could spark you to say “This is what I would want if I was ever seriously ill – what about you?”
In fact, these conversations are not really about “death and dying” at all. They are about life. And when we have helped each other learn to have “the conversation”, then more and more often at future Thanksgivings, we will be able to look back at the life of a loved one we miss, and say that in the last phase of life “she was taken care of just the way she would have wanted.” And for that, we can be deeply grateful.
So please don’t miss any chances this week to “Talk Turkey.”
And have a Happy Thanksgiving.
I have not heard a single person claim, during debates about Question 2, that the quality of end-of-life care in Massachusetts is acceptable. There is clearly overwhelming agreement that significant improvements are needed. The questions are:
What improvements are most urgent? How can we achieve them?
Tomorrow, millions of Massachusetts voters will be asked to vote on a different question, Question 2:
Should it be legal for "a physician licensed in Massachusetts to prescribe medication, at the request of a terminally-ill patient meeting certain conditions, to end that person's life"?
Question 2 misses the point. It uses the wrong process. It is premature.
Most importantly, there is a better way.
So I will vote NO.
1. Misses the point
Despite our current major shortcomings in end-of-life care, Massachusetts can and should lead the nation in this area. We can and should be guaranteeing what might better be called a "right to care" than a "right to die" -- i.e. a right to care that is compassionate, including symptoms adequately controlled at all times; that ensures dignity, as defined by the patient; and that respects autonomy, i.e. is always based in an understanding of and respect for the patient's wishes.
As a recent Boston Globe editorial explains in detail, Question 2 will do little or nothing to achieve that.
2. Wrong Process
We should not be using a ballot initiative to decide how best to provide health care for people.
A ballot initiative is a poor process for deciding what to do when both issues and possible solutions are complex. Almost everyone who has approached me in recent weeks about Question 2 has been uncertain -- some have been quite wrong -- about exactly what it would do (or not do). No matter what decision is made tomorrow, I will have no confidence that that decision represents the well-informed judgment of the majority of voters.
There were, and are, better approaches. For example, if the law proposed in Question 2 were going through a legislative process, we would have many possibilities for engaging the people of the Commonwealth in public deliberation. This process would likely be far more constructive than much of what we have seen in recent weeks, too often dominated by fear tactics than by facts and reason. Perhaps most importantly, in that public deliberation we would not be forced into the unfortunate yes/no choice we have tomorrow about a proposal that even many supporters agree is imperfect. In a legislative process, each part of a proposed law can be independently scrutinized. Any part that needs improvement or amendment can be changed. And entirely new solutions sometimes emerge.
Even proponents of Question 2 agree that the choice of "assisted suicide" should be a "palliative care option of last resort" -- i.e. an option to be considered "when unacceptable suffering persists for terminally ill patients despite state-of-the-art palliative care."
A moral precondition of promoting a "last resort" option is that reliable access exists to the other options. Too many people in Massachusetts today do not have reliable access to "state-of-the-art palliative care" -- including to effective pain and symptom management, or to the support services they need in order to be able to die peacefully at home, if they prefer.
Passing Question 2 tomorrow will make it possible that some dying patients who want to be at home for their last hours and days will reasonably decide that their best available choice is assisted suicide, even though they might have preferred other options, such as more adequate home-based palliative care services.
The time to consider adding "assisted suicide" to the list of a patient's options will be when we have first guaranteed universal access to "state-of-the-art palliative care".
4. A Better Way
No matter what the outcome is on Question 2 on Tuesday, starting on Wednesday we should all unite to do whatever it takes to ensure that every dying patient in Massachusetts has reliable access to state-of-the-art palliative care, so that every dying patient can be cared for the way s/he would have wanted. One possible starting point is the recommendations of the Massachusetts Expert Panel on End-of-Life Care: The Urgency of Health System Reforms to Ensure Respect for Patients' Wishes and Accountability for Excellence In Care.
Few of the recommendations in that report, submitted to Governor Patrick more than two years ago, have yet been implemented. On Wednesday we should begin. I will suggest some specific ways we can start in my next posting.
[Author's note: apologies for the inconsistencies in the size of the fonts in this posting. I have not yet mastered all the technical details of the blog's software.]
The issues Question 2 raises are truly profound and deeply important -- including about life and what gives it meaning; about death and what "dignity" entails; about the roles, responsibilities, and possible limitations of doctors in alleviating human suffering; and about the boundaries of government regulation in our private lives.
At the end of this posting, I will suggest some ways to learn more about these issues. But first, as I promised in yesterday's posting, here are three reasons why I do not think you need to be afraid about what will happen on November 6 with Question 2, whether or not it passes.
1. Based on Oregon's experience, the odds are roughly 99.8% that Question 2 will not change the care you or your loved ones receive.
In Oregon, physician-assisted suicide has been legal for 14 years. Since then, of every 1,000 people who die, only 2 request and then receive a prescription they can use to end their lives. Of these 2, almost a third never take the prescription. So for more than 998 of 1,000 people who die in Oregon, the care they choose, and the care they then actually receive, is a matter of the availability and quality of the existing mainstream options. In Oregon these are already good, and continually improving.
If Question 2 passes and the Oregon experience holds true here in Massachusetts today, we can expect that for 99.8% of us our care at the end of life will involve the same choices that exist today. These range from "try to keep me alive as long as possible no matter what" to "just keep me comfortable and at home", or anything in between, or any combination or sequence of "life-prolonging" or "comfort/home" options.
For me, this means that if what you care about is ensuring that people in the Commonwealth have more reliable access to the care they want and need at the end of life, Question 2 is at best a 0.2% solution.
In Massachusetts, far, far too many of the other 99.8% do not today have reliable access to the palliative care and hospice services they need. I personally am far more worried about what will (or won't) be done for them, than I am about what we decide to legalize (or not) for the 0.2%.
2. If a patient is concerned about physical suffering, in almost all cases there are ways besides "assisted suicide" to ensure that that suffering can be controlled.
If comfort ever becomes a patient's overriding goal, then it can almost always be adequately achieved. If necessary (it usually is not), this can mean use of sedating medications so that the patient is no longer conscious. In addition, if it is clear that a patient wants no further life-prolonging measures, then there is a strong moral consensus in the medical profession that there is no obligation to continue medically-administered nutrition or hydration. In the case of Nancy Cruzan (1990), the U.S. Supreme Court affirmed a "constitutionally protected right to refuse lifesaving hydration and nutrition." With zero hydration, a human being does not live more than two weeks. It is true that "up to two weeks" can feel like a very, very long time. But turning instead to "assisted suicide" if that becomes legalized could take even longer: under the procedures stipulated in Question 2 the minimum time from a patient's initial request to a prescription being written is 15 days.
Some people conclude from this that if everyone in Massachusetts had prompt, reliable access to superb palliative care and hospice services -- which is tragically not even remotely the case today -- there would be no reason or need for Question 2.
3. If Question 2 passes, there are multiple ways to ensure adequate safeguards to prevent "abuse".
The result of this ballot initiative will not -- or at least should not -- be the end of the story. Some opponents of Question 2 point out what they consider major shortcomings in its stipulated safeguards. Even if these opponents are right, then just as is true for any area of medical practice, there are ways those can be fixed.
First, if changes in the law are needed, our state legislature can make those changes. Whether or not they will actually do so is obviously another matter, but that will be up to us.
Much more importantly, all that passing Question 2 will do is establish the minimum conditions under which it will be legally permissible for a physician to write a lethal prescription. The "standards of care" to which physicians are held accountable, including medicolegally, are often higher than the minimal standards establishing what a physician's licence permits her or him to do.
For example, as a licensed physician in Massachusetts, I am permitted under Massachusetts law to do many things that my hospital, Beth Israel Deaconess Medical Center, does not allow me to do, and that my malpractice insurance would not cover if I did them. I am not allowed by BIDMC to prescribe complex chemotherapy. I am not even allowed to do many basic medical procedures, such as a "thoracentesis", which involves inserting a needle into a patient's chest to drain fluid for diagnostic or therapeutic purposes. I did those routinely during my residency training, and I think I was actually quite good at them. But I have not done one for over 25 years. As a licensed physician, I am permitted by Massachusetts law to do them, but not as a BIDMC physician.
If Question 2 passes, then at Beth Israel Deaconess Medical Center, where I practice, we will create a policy with guidelines and procedures that all of our physicians will be expected to follow. If any physician does not follow those, s/he will be risking serious trouble, including possible loss of privileges at BIDMC. I expect that BIDMC's guidelines will include things not specified in the Question 2 law. For example, Question 2 does not require that a patient receive counseling from a physician or nurse with training in palliative care to ensure that the patient is fully informed of the full range of options for preventing and alleviating their suffering. I believe that we at BIDMC will require something like that.
If Question 2 passes, I expect that most if not all health care facilities and physician practices in Massachusetts will, like BIDMC, adopt guidelines or policies that provide excellent protection for all of our patients.
If these thoughts leave you still worried about the impact of passing Question 2 on vulnerable people, then by all means vote "No" on November 6.
* * * * *
For further reading:
Below are a few sources of additional information that I hope will help you understand the issues raised by Question 2. Read as much or as little as you feel you need to cast a thoughtful vote on November 6.
Some people deeply committed to respect for "patient autonomy", and to ensuring that a patient's suffering is always effectively addressed, will nonetheless vote No on Question 2. To understand why, I suggest you read a cautionary historical perspective by Dr. Ezekiel J. Emanuel that was published in The Atlantic in 1997. It covers many historical, moral, political, and practical aspects of the "assisted suicide" and "euthanasia" debates. If your time is limited, you can read a shorter op-ed by Zeke in yesterday's NY Times that highlights some of the key points he made in the earlier article, which remain relevant today.
For a very different perspective, and to understand why some people with a deep reverence for human life, up through its very end, will vote Yes on Question 2, I recommend learning from one of the physicians whose moral values, commitment to his patients, and contributions to responsible public debate I most admire, Dr. Timothy Quill. Tim is a deeply thoughtful, longtime proponent of legalizing physician-assisted suicide. Tim wrote a courageous article in 1991 in The New England Journal of Medicine, which sparked widespread national debate at the time (and since), about how he, in violation of NY state law, wrote a prescription for a 45-year old patient of his with leukemia that she used to end her life on her own terms, peacefully and at home. An article he wrote in 2008 titled "Physician-Assisted Death in the United States: Are the Existing 'Last Resorts' Enough?" is a good starting point for understanding why he would almost certainly vote Yes on Question 2.
A user-friendly summary of ballot Question 2, including listings of the main arguments made by both proponents and opponents, together with links to additional information, is provided by the wonderful collaborative on-line resource "BallotPedia".
Additional perspectives from a group of primarily lay people in Massachusetts, including some very thoughtful "white papers" they have written that are directly relevant to Question 2, can be found on the website "Medical Ethics and Me", provided as a public service by a Community Ethics Committee affiliated with the Harvard teaching hospitals. We need more voices like theirs to be actively involved in shaping every aspect of our health care system. That means your voice, too.
A Final Note on Civility in this Debate, and a Hope for November 7 and Beyond:
Zeke Emanuel (see above) is a longtime colleague and friend. I was horrified and saddened in 2009 when Zeke himself was one of the victims of the campaign of Orwellian lies about non-existent "death panels" during the national health care reform debates. Read his 1997 article in The Atlantic, or his op-ed yesterday, both eloquently expressing his opposition to physician involvement in assisted suicide or euthanasia. Then read the "Death Panels" section of the Wikipedia entry on Zeke, describing the utterly dishonest attacks against him as President Obama's "Doctor Death." From these I think you will learn, as I did, a lot about the challenges of engaging in thoughtful public discussion about difficult issues in our country today. As a nation we should be embarrassed and ashamed about the state of public discourse that we are tolerating.
We need to do better, and we can. I hope that starting November 7 in Massachusetts we will leave the polarizations, fear tactics, and at times self-righteous moralizing of the Question 2 debates behind us. I hope that starting November 7 we will unite in working together to improve end-of-life care for everyone in the Commonwealth. And I hope that the way that we do so will set an example of civil public discourse, and of the rapid progress in health system improvement that such discourse can make possible, that is worthy of being emulated elsewhere, and one day nationally.
Should a doctor in Massachusetts be legally permitted to write a prescription for a patient to use in suicide? On November 6, the people of the Commonwealth will decide.
This is an issue about which deeply thoughtful, caring, and principled people in Massachusetts have profoundly differing views. Each "side" has, among its most passionate advocates, people I greatly admire. The moral, practical, political, religious, and other issues that Question 2 raises for people are almost infinitely complex. But the choice each of us will face when we vote is as simple as it can be.
Just two choices.
I have serious misgivings about whether a ballot initiative is the best way for the people of Massachusetts to make decisions about profound, complex moral issues. My misgivings are especially great when, as I believe is true of Question 2 next Tuesday, many people are going to have to cast their vote without having had the time, opportunity, or help they needed to develop a clear and accurate understanding of what those issues are.
I am further distressed that too many of the ads, op-eds, and advocacy emails that I have seen -- from both sides -- seem to me to present seriously distorted, irresponsibly exaggerated claims that are designed to frighten you into voting one way or the other. If I didn't know better, I would be more frightened than ever about myself or a loved one ever having a so-called "terminal illness".
Scaring people by misinforming or misleading them, even if you think you are doing that in order to help them do what is good for them, is wrong. The fact of our inevitable mortality is, for most of us, scary enough. Exploiting those fears for political purposes, however well-meaning, is wrong. It was wrong when Sarah Palin and others promulgated lies about non-existent plans for alleged "death panels" during the national health care reform debates. It is wrong today in Massachusetts when people exploit your fears to get you to vote the way they think you should on Question 2.
More specifically, I think it is wrong here in Massachusetts when scare tactics are used to frighten people into thinking that Question 2 is "a recipe for elder abuse", as if that is even remotely the intent of its proponents, or even remotely acceptable to them. I also think it is wrong to promulgate fears that, if Question 2 passes, insurance companies will encourage you to commit suicide in order to save themselves money, as the "No on 2" website implies in a video titled "Barbara's story" that features a headline from Oregon:
"Health Plan covers assisted suicide but not new cancer treatment...Don't let her experience in Oregon happen here in Massachusetts."
I do not believe any health plan in Massachusetts would ever do that. Suggesting that they would is insulting to them and their leaders. I sometimes disagree with our health plans and their leaders, but in my experience the leaders of Massachusetts health plans care deeply about trying to ensure that their subscribers receive the best patient-centered value out of every health care dollar spent.
And even if leaders of a health plan in Massachusetts were one day as venal as some people believe they already are today, they are not that stupid. The people of Massachusetts are vigilant, and even a single well-documented case of a health plan trying to encourage a patient to commit suicide in order to save money would lead to such a public backlash that that plan's "business success" would be devastatingly damaged, if not ruined forever. As it would deserve to be.
Similarly, I think it is wrong when proponents of Question 2 suggest that, unless a doctor is legally permitted to write lethal prescriptions, you or a loved one may well be forced to endure a prolonged period of terrible physical suffering. Here is what the "Yes on 2" website says:
Patients dying of late stage cancer, and other terminal illnesses, can face weeks or months of extreme pain and suffering before death.
They clearly want you to believe that unless Question 2 passes, you are at high risk of being forced to experience unconscionable levels of suffering. In truth, whether Question 2 passes or not, the only reason a patient in Massachusetts need ever face "weeks or months of extreme pain and suffering before death" is if their medical caregivers are utterly incompetent.
Scaring people does not usually help them think more clearly, or help them make decisions more responsibly. And for the overwhelming majority of people, no matter how they decide to vote, and no matter what the result on November 7, there is little or no reason to be scared about what happens with Question 2.
In my next posting, I will try to offer more detailed reassurance.
Tuesday, August 3, 2010, my cell phone rang at work. I explained to a colleague that I don't normally take incoming calls on my phone (my wife and kids have a special ring tone). I ignored the ringing, and it eventually stopped.
A few minutes later my phone rang again. My colleague said "I think you better answer it." It was my mother, calling from my parents' home in
Eventually, EMTs succeeded in the resuscitation and took him by ambulance to
When I got to the hospital it was nearly midnight. Mom and Lisa were back home. My father lay in a deep coma, breathing rhythmically with the respirator. His heart was working normally, with no evidence of a heart attack (damage to heart muscle). He must have had an "arrhythmia", which can happen out of the blue and might never recur.
The wonderful senior medical resident explained that a careful neurology evaluation indicated that there already was very severe brain injury caused by lack of oxygen during the cardiac arrest. My father did not quite -- or not yet -- meet the strict clinical and legal criteria of "brain death". It was possible that "he might progress to brain death", and be declared dead. It was possible that his brain function might recover very slightly, but it was not realistic to think he would ever again live independently. He might well end up in a so-called "persistent vegetative state" (permanent loss of all consciousness). Or maybe a "minimally conscious state". If it were either of these, then with "proper care" he might live for months, or even years.
If they stopped life support, he would likely die within hours.
Fortunately, they said, he showed no signs whatsoever of any discomfort.
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At 1:30 am on Wednesday, August 4, 2010, I sat with Mom and Lisa in the quiet, wood-paneled den of my parents' house. I was in my father's usual spot on the small couch, where every morning he watched CNN before heading downtown for one of the daily lunches with friends he enjoyed so much. Mom sat across from me, under a framed calligraphy tribute to my Dad from the company he had worked for for decades.
I told Mom and Lisa what I had learned at the hospital. I said that the doctors at the hospital wanted to know what they should do.
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July 4, 2010 was a beautiful day in
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Wednesday, August 4, 2010 at 1:45 am, I called my brother Derek in
I drove back to the hospital, showed the doctors the health care proxy form designating Mom as Dad's proxy and me as the "alternate", and I explained that Mom and I both knew, with certainty, that Dad would not want his life prolonged further.
I stepped outside the room while they stopped the machines. I returned to see Dad looking so much more like my real Dad, without all those tubes. He was sleeping, and looked peaceful. Sitting there, I wrote a short email on my blackberry to Ellen Goodman and others back in
Dad died peacefully in his "sleep" later that morning, in a quiet hospital room.
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Tuesday, August 10th I wrote one of few postings I have ever put on Facebook:
My father, Brian Derek Forrow (1927-2010), died unexpectedly last week. Very sudden for all of us, but peaceful for him. He had spent July planning the memorial service he wanted one day -- none of us thought it was for anytime soon, but we'd asked him about that when we visited 4th of July. So yesterday in St. Barnabas (Episcopal) Church in Greenwich, a church he co-founded >40 years ago and served as its first Senior Warden, my mother, other family and friends got to listen to the readings from scripture, music, and hymns he wanted us all to hear one day when we would be reflecting on his life.
A short tribute to Dad in the NY Times has a formal photo from his lawyer days. The last entry in his handwritten instructions for his service was "Through our great good fortune, in our youth our hearts were touched with fire. --Holmes." A friend directed me to the source -- Oliver Wendell Holmes' 1884 Memorial Day Address: "In Our Youth Our Hearts Were Touched with Fire."
Now I understand better why Dad was so interested in the Civil War, and in
. And why he chose "God of Abraham Praise" as the first hymn for his service, firmly believing that one day all the descendants of Abraham -- Jews, Christians, and Moslems -- would figure out how to be together in peace (as most descendants of Union and Confederate soldiers take for granted today). And how so much of my own work today in medicine, ethics, and The Albert Schweitzer Fellowship is really just my own variation on the main themes of my father's life -- a belief in the importance and power of ideals, particularly when life presents challenges, in supporting each other in trying to live by them, and in treating everyone, always -- ALWAYS -- with kindness and respect. It's both startling and comforting to realize how much more of Dad I have in me, am deeply proud to have, and hope in the future to have even more, than I ever before realized. Lincoln
Please make sure that the people you love know how much you do -- early and often.
If you haven't yet done so, please start having "the conversation" with loved ones. Soon.
Welcome to our blog -- yours and mine.
When Ellen Goodman, former Boston Globe syndicated columnist, approached me several months ago about joining her in a proposed weekly blog on Boston.com, I broke my promise to myself not to accept any new writing obligations this year. (Breaking a promise is rarely a good thing, and I feel a little embarrassed admitting in the very first sentence of this new blog that I recently did that -- especially since I am supposed to be an expert on "ethics"?!)
I first met Ellen in the process of chairing the Massachusetts Expert Panel on End-of-Life Care from 2009-2011. My work with members of the panel gave me a chance to reflect on more than 25 years of clinical and organizational experience I have had as a doctor, first as a primary care physician and more recently as director of Ethics Programs and director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center.
At the heart of our final report is a very simple idea: people in the last phase of life should be taken care of the way they would want to be. Unfortunately, a major finding of our report was that in Massachusetts today, our health system is not even remotely trying to ensure that this happens.
Our report, Patient Centered Care and Human Mortality: The Urgency of Health System Reforms to Ensure Respect for Patients' Wishes and Accountability for Excellence In Care, focused almost entirely on shortcomings in our health care system. Far too often, a patient's wishes are never even elicited in time for those wishes to guide care. At other times, they are known but not adequately respected.
But there are two dirty little secrets that we did not address in any detail in our report, which we can?t entirely blame the health care system for.
First, many of us are not even sure what our wishes are. When we are healthy, there?s no urgency to figure them out. When we are sick, we often have our hands full just trying to get better. If our doctor or anyone else raises the issue, many of us change the subject -- "I'll cross that bridge when I get to it."
Second, even if we have thought a lot about our wishes, we often haven't told anyone else -- not our doctor, and no one in our family. "Maybe tomorrow", we say, but the truth is, as my colleague Dr. Judy Nelson has pointed out, "It's always too early until it's too late."
There is very little chance, when one day our mortality looms large, that you or I will be taken care of the way we would want unless (1) we actually have figured out what we do and don?t want; and (2) we have told someone else -- family who may need to make choices on our behalf, and also our doctor.
Doing these two things does not need to be depressing -- quite the contrary. The real issue is not "death", it's life, as renowned 20th century humanitarian Dr. Albert Schweitzer pointed out so well:
Something deep and sanctifying takes place when people who belong to each other share the thought that every day, each coming hour, may separate them. In this awareness we always find that the initial anxiety gives way to another deeper question: Have we given each other everything we could? Have we been everything we might have been to one another? Thinking about death in this way produces true love for life.?
--Dr. Albert Schweitzer (1875-1965)
To help us do these two things, Ellen recently launched, with many wonderful partners, The Conversation Project, an exciting new initiative to help all of us prepare for choices that we, and everyone we love, will likely one day face. I urge you all to go to their web site and read the rapidly-growing stories of people from all walks of life who are beginning to have "the conversation." But in the meantime, while the exciting growth of The Conversation Project is consuming so much of Ellen's life, a cherished loved one of her own is entering the final stages of a long illness. It is clear that she needs Ellen more than ever. It hardly seemed right for Ellen to give "blogging" about end-of-life care higher priority than ensuring that her own loved one receives the care she needs. So while Ellen will join from time to time as a "guest blogger", it's now just me.
And here's where you come in. My goal in most of my postings will not be to give you a definitive point of view on any subject. My main goal instead will be to spark you to reflect and then, I hope, contribute your own ideas and experiences through the comments section of the blog.
End-of-life care is the only issue in all of health care that every single one of us, and everyone we need, will one day face. We truly are all in this together. So I hope you will write early, and write often, so that we can learn together. One day, it should become universally true that when we lose a loved one, no matter how sad we are, we can nonetheless look back and say "at least s/he was cared for exactly the way she would have wanted."
So thanks in advance for being my co-bloggers!