[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.
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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!