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Support for Massachusetts Death with Dignity: what 14 years of data show us

The views expressed are those of the author and are not necessarily those of Scientific American.


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On Tuesday, Massachusetts voters will face the Death with Dignity Act and decide whether they are comfortable with the idea of a physician being able to provide medication that a terminally ill patient can self-administer to end his or her life. If the act passes, Massachusetts will join Oregon, Washington, and Montana in being one of the few states that legally allows physician-assisted suicide (PAS). Many point to the Massachusetts outcome as a critical turning point in the nationwide debate. Lewis M. Cohen at Slate, for example, called it a “crucial milestone” because “if the act passes… other states that have previously had unsuccessful campaigns will certainly be emboldened to revisit this subject.”

In the past few weeks before the vote, bioethicists, physicians, patients, and others have become more vocal – with those in opposition coming forward particularly strong. Last week, for example, bioethicist Ezekiel Emanuel published an opinion piece in the New York Times entitled, “Four Myths About Doctor-Assisted Suicide.” The alleged myths he tackles about PAS are: 1) Most patients who desire it are in excruciating physical pain, 2) It is the inevitable result of advanced medical technology that enables us to prolong life, 3) It will improve end of life for everyone, and 4) It is a guaranteed quick and painless death.

There is much to address in this piece and about PAS in general, and I will not be respond to it all here (please scroll to the end for links to other recommended reading). But in the last few days before the vote, there are a few key points I want to address.

An advantage of PAS being legal in Oregon for fourteen years already is that we have actual data to help analyze some of the theoretical concerns. Do the data support opponents’ fears?

Physical pain versus suffering

Dr. Emanuel cites some of the Oregon data in his piece, showing, for example, that “Only 22 percent of patients who died between 1998 and 2009 by assisted suicide in Oregon… were in pain or afraid of being in pain.” The reason he cites this data is to debunk the alleged myth that most people who desire PAS do so because they are in “excruciating physical pain.” This perception of the terminally ill’s pain, he says, is the “fundamental claim” behind support for PAS – implying that with the numbers in fact low, the argument to support PAS is hurt.

But I’m not so sure that is the fundamental claim. Support for PAS was born from wanting the option to relieve patient suffering, which anyone who has dealt with devastating illness knows is not always the same as excruciating physical pain. The data from Oregon show that the most frequently mentioned end-of-life concerns were: losing autonomy (90.9%), decreasing ability to participate in activities that made life enjoyable (88.3%), and loss of dignity (82.7%). It is for these reasons that the terminally ill wish for a dignified death, and for these reasons that supporters of PAS wish to enable caregivers to provide it.

Evidence for safeguards

Another piece of data cited from Oregon is that PAS is used extremely rarely. Only 0.2% of terminally ill patients, Dr. Emanuel points out, opted to use it. He uses this figure to debunk the myth that PAS will help all have a good death. While that is one way to view it, another way is that these figures are actually quite reassuring, in that PAS has been used as intended. PAS is not meant to ensure a good death for all. If more than a very tiny percentage of the state were using it, we would and should worry: we would worry that individuals are using it as a substitute for palliative care, that they are being pressured, and that they are rushing to death without considering all the other options they should be considering first.

Who are the 0.2%?  Data from Oregon show the median age of patients choosing death with dignity was 71 years old, and the most common underlying condition was cancer (80.9%), followed by ALS (7.4%). Dr. Emanuel chooses to describe them this way: “Well-off, well-educated people, typically suffering from cancer, who are used to controlling everything in their lives — the top 0.2 percent.”  While Dr. Emanuel is factually accurate in his description of the patients’ education and underlying disease, how he chooses to characterize the reasons they wish to die a peaceful death is surprisingly insensitive. One comment addressed it best:

“I have been recently diagnosed with cancer. I know that a cancer death is a miserable way to die. I’m not sure I would choose physician assisted suicide but it would be nice to know the option is available. It is not because I’m a spoiled woman used to controlling everything. It is because I have seen a cancer death and it’s anything but peaceful.”

Wanting to exercise control over a terminal illness accompanied by profound suffering is not something to be ashamed of. The desire for a peaceful death is universal. Fear of death is universal. Fear of suffering while dying is universal. That fear is not a mark of privilege, but of the human condition. It is something we should take very seriously, be sympathetic towards, and help relieve – certainly not belittle as a desire for “controlling everything” gone awry.

Dr. Emanuel continues: “And who are the people most likely to be abused if assisted suicide is legalized? The poor, poorly educated, dying patients who pose a burden to their relatives.” Consideration of individuals who might be abused is a valid concern voiced by many opponents and wary supporters, too. Fortunately, the data do not support it. With 98.3% of patients who used PAS insured, 93.2% with a high school diploma or higher, and 94.4% of patients informing their families of the decision, where is the abuse of the poor and poorly educated? A 2007 study published in the Journal of Medical Ethics backed this more systematically, analyzing all the outcomes and concluding “no evidence of heightened risk for the elderly, women, the uninsured, people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations.”

What some see as evidence for privilege, I see as evidence for safeguards – ones that are working exactly as planned.

The false dichotomy of palliative care “versus” PAS

“Instead of attempting to legalize physician-assisted suicide, we should focus our energies on what really matters: improving care for the dying — ensuring that all patients can openly talk with their physicians and families about their wishes and have access to high-quality palliative or hospice care before they suffer needless medical procedures” Emanuel writes. The Massachusetts Medical Society, which has spoken out against the bill, similarly presents it as a one or the other situation: “Instead of participating in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life.” While I agree with their aims, they set up a false dichotomy: the implication is that we either improve patient care, or we approve PAS.

But improving end of life care and providing the option of a dignified death are not mutually exclusive. Of the patients in Oregon who went through with PAS, 89.7% were enrolled in hospice care, calling into question the assertion that if we simply improve hospice care, patients will no longer wish to die. Since the passage of its Death with Dignity law, Oregon has actually become a nationwide leader in palliative care. As physician and former New England Journal of Medicine Editor-in-Chief Marcia Angell explained: “At first, there were fears that the availability of physician-assisted dying might crowd out good palliative care, but it has had the opposite effect. Most experts believe that Oregon now has among the best palliative care in the country.”

If anything, the data support a trend that recognizing death with dignity has gone hand in hand with recognizing end of life issues across the board – and that includes improving palliative care.

Comparing to an ideal world

The opposition to PAS often relies on an assumption: That something else can be done. That premature death does not have to happen. That there must be another option. Dr. Emanuel put it this way: “Typically, our response to suicidal feelings associated with depression and hopelessness is not to give people the means to end their lives but to offer them counseling and caring.”

In an ideal world, he would be right. In an ideal world, terminally ill patients would find solace in counseling and somehow find it within themselves to embrace their last few months of life, despite often being immobile, bedridden, and unable to take care of themselves. In an ideal world, rather, no one would be made to endure such suffering in the first place.

But we do not live in an ideal world. We live in a world where counseling does not work for everyone; where even the best palliative care and family support does not convince every terminally ill patient that a few more months of suffering is worth it. Family members know well that the bleak reality of end-of-life care is that there are situations where everything that can be done has been done – and their loved one still comes to a thoughtful and rational decision to wish to end her life now, on her own terms.

As a result, much of the opposition to PAS hinges on a logical fallacy: they contrast PAS to an ideal world, when they should be contrasting PAS to the reality that is occurring now. The reality that is occurring now is that people already choose to end their lives. Without the assistance of medicine, they just do it more brutally. They starve to death. They acquire guns and shoot themselves. Dr. Emanuel points to some potential complications of PAS: some patients have vomited their pills, for example, while one person awoke after taking his pills. But for this to be a compelling argument against PAS, we would have to be saying that these outcomes are worse than the outcomes that already exist. Arguing that we should not legalize anything that comes with any risk, if taken to its logical conclusion, is an argument against nearly all medical procedures. The reason we perform them is not that they are free from risks – but that we believe the benefits outweigh the risks.

The appeal of PAS

“The appeal of physician assisted suicide is based on a fantasy,” Dr. Emanuel concludes. If your idea of PAS is that it is to relieve excruciating physical pain, that it will play a role in everyone’s end-of-life decision-making, and that there will never be any complications, Dr. Emanuel is correct that this is a fantasy.

But if your idea of PAS is that it will provide an option for a very small number of terminally ill patients who come to a thoughtful, rational, and non-coerced agreement with their loved ones and doctors that they wish to die peacefully rather than live out the last few months of their illness while suffering – then it is not.

To me, the appeal of PAS was not based on any of the myths Dr. Emanuel debunks. It is based on knowledge that if I, a loved one, or one of my future patients finds themselves trapped in a terminal illness accompanied by deep misery and psychological distress – suffering which cannot and was not helped by any form of counseling or care – that the ability to die at home, peacefully, and on the patient’s own terms exists as an option. It is the option that appeals to me – not that we would resort to it without time and deep thought, and certainly never that we would resort to it as a substitute for everything else the medical system has to offer for life. It is the knowledge that in the cases where everything was tried but still did not offer solace, and the end is inevitably coming, that it can be done with peace, and as the Act says, with dignity.

That is the appeal.

And the data show it can be done.

***

For further reading, here are some additional pieces – from both sides – that I recommend.

In favor:

In Defense of Dignity, by Dan Savage. Published in The Stranger.

May Doctors Help You to Die? by Marcia Angell. Published in The New York Review of Books.

Opposed:

Physician-Assisted Suicide Is Not Progressive, by Ira Byock. Published in The Atlantic.

Suicide by Choice? Not so Fast, by Ben Mattlin. Published in the New York Times.

Ilana Yurkiewicz About the Author: Ilana Yurkiewicz is a fourth-year student at Harvard Medical School who graduated from Yale University with a B.S. in biology. She was an AAAS Mass Media Fellow, and her work has appeared in the New England Journal of Medicine, Aeon Magazine, Science Progress, The News & Observer, and The Best Science Writing Online 2013. She has an academic interest in bioethics, currently conducting ethics research at Harvard after previously interning at the Presidential Commission for the Study of Bioethical Issues. She is going into internal medicine and is also interested in quality and systems improvement. Follow on Twitter @ilanayurkiewicz.

The views expressed are those of the author and are not necessarily those of Scientific American.





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  1. 1. thtoc 4:06 pm 11/3/2012

    You state: “We live in a world where counseling does not work for everyone; where even the best palliative care and family support does not convince every terminally ill patient that a few more months of suffering is worth it.”

    Given these words of yours, it’s interesting that question 2 does NOT require psychological or palliative care counseling AND does not require family to be notified that the person has asked for OR received death pills.

    So much for counseling and family concerns!

    Link to this
  2. 2. sharayurkiewicz 4:10 pm 11/3/2012

    Thank you for actually relying on data. Incredibly well-reasoned and well-argued!

    Link to this
  3. 3. good_bud 5:06 pm 11/3/2012

    Since the late ‘70’s I have been involved as an elder advocate, had government oversight of nursing home administrators, and visited many nursing home residents. As a hospice volunteer I have been at deathbeds of both family and others. I have watched with great interest and concern the cultural push for legalizing a form of voluntary euthanasia now being dubbed, ‘assisted suicide.’ Despite cultural attempts to make it some distant German, institutional machine, ‘euthanasia’ has many forms and simply means, “to kill with benevolent intent.” In this case the debate is presented as a matter of self-determination or a supposed answer for pain. These simplistic ‘reasons’ for legalizing the intentional killing of vulnerable individuals, even if it is killing at their own hand, are rarely cross-examined beyond their immediate emotional allure.

    But it is these very issues that belie the deeper risks of changing the centuries old laws that have historically protected the medically dependent and emotionally vulnerable.

    For very good reason the laws of society have not condoned intentionally killing those with a terminal diagnosis, or those who are in physical or emotional suffering, The abuses that have been demonstrated in Oregon illustrate why.

    Those nearest to the patient, with the most emotional angst, may send emotional messages, and not even realize the messages they send at this important time. This is why good hospice makes the family members and friends an important focus of their counseling. Many ‘well-intentioned’ bystanders can send very inappropriate ‘get on with it’ messages without fully understanding. Subtle manipulation by relatives will be impossible to detect. And these relatives are those who have the most to gain from the ‘event.’

    Now that state-sponsored suicide is the rule in Oregon, the state government has diminished its financial aide for other medical assistance. And ironically this is particularly true of help dealing with pain. Numerous studies have shown that the level of pain and comfort care for Oregonian patients has dropped across the board.
    In Oregon there is no mechanism to determine if all cases of ‘assisted suicide’ are reported. Nor is there an investigation into the specific actions of the assistant when the act is reported. It is no longer necessary that a physician be the ‘assistant’ (Matheny case). And there is no penalty for a ‘failure to report’. (According to David Hopkins, Analyst at Oregon’s Health Statistics) This has given rise to some questionable circumstances in which non-terminal patients have been killed or others given lethal doses with the dosages still being ineffective. (In one such circumstance the victim emphatically changed his mind and went on living to die a natural death later!) There is no counseling required for the patient. There is no way to determine the emotional pressures the individual is feeling. In most every other legal and social setting, the desire for suicide is recognized as the number one indicator of depression, as ‘a cry for help,’ not an actual cry for death. But now an ‘assistant’ may be involved in the mortal act without counseling and without any fear of prosecution. And if they have a less than ideal situation and ‘fail to report’ there is no fear of legal repercussion.
    It is a system wide open for abuse of the most dependent and vulnerable among us.
    —–
    Brian Johnston is formerly California Commissioner on Aging, served on California’s Board of Examiners of Nursing Home Administrators, and was instrumental in convening CEASE – CA’s Elder Abuse Summit for Empowerment.

    Link to this
  4. 4. elizabettac123 8:01 pm 11/3/2012

    PAS is an option that should be available.

    Link to this
  5. 5. dwbd 8:47 pm 11/3/2012

    good_bud, You guys condone invading countries, killing 1/2 million, and 3000 American soldiers just to get some cheap oil and boost the oil price and give us that holier-than-thou crap about “abuse of the most vulnerable”. And you deny health care for the poor – your main man in the Supreme court declaring that if the poor can’t afford health care – too bad – die in the street. That’s your hypocritical world.

    You wouldn’t do zip to help a starving child and your gang throws millions of people into prisons, locked in cages for decades, for victimless crimes – for non-violence and costing $billions. And yet you happily let the worst, most evil creepoids go scot-free who buy politicians, pollute and destroy the environment, killing millions with emissions, invade countries to get Oil, cause financial collapse and untold suffering, break laws without repercussions. Not even investigated for criminal actions, because they have the money to buy politicians.

    And you have the audacity to pretend you care for the suffering of the dying. And when it comes to voting funding to help the sick & dying you would vote for “fiscal constraint” while approving trillions for Oil wars and to protect terrorist funding Oil exporting nations.

    Sorry for the tirade, but I just despise hypocrites.

    Link to this
  6. 6. Bops 10:27 pm 11/3/2012

    PAS option should be available.

    No one has the right to force any person to live against their will.

    Link to this
  7. 7. jtdwyer 8:21 am 11/4/2012

    I agree with ‘good_bud’ implications that controls to prevent caregiver abuse, independent counseling should be mandatory and some method to prevent the selection of PAS to systematically reduce health care costs is absolutely necessary: any patient that rejects a PAS option should be given all possible support to reduce suffering. With those restrictions, I strongly favor PAS as a patient option.

    However, I have a cautionary personal anecdote. Earlier this year I had surgery to remove the upper 1/3 of my colon. I also have a moderately severe heart condition. My cardiologist, gastroenterologist and general surgeon agreed that I should remain in intensive care for an extended period following surgery to minimize the risk of heart problems.

    I was in the ICU for two days even though I was generally recovering well. I found the ICU nursing staff to very supportive initially, but later on, when I needed assistance while they were under pressure to support more critical patients they were understandably quite demeaning of my minor yet very necessary requests for assistance. The bottom line is that the ICU is intended to support critical care patients.

    In the meantime, I was under heavy sedation and, with all the lights and activity in the ICU, I was not able to sleep at all. The nurses were monitoring my blood pressure, which had to meet some threshold before I could be moved to a private room. The combined pressure from nurses, heavy medication and sleep deprivation resulted in paranoid delusions: I was convinced that the nurses fully intended to kill me by giving me improper blood pressure medication! I suspect that those delusions did not help reduce my blood pressure! The delusions were quite overwhelming even though I was also rationally aware that I was suffering from delusions! If I had not been concerned that they would kill me, I might have discussed my delusions with the nurses, but I could not: I hid my suffering from them. I seriously considered finding some way to kill myself so the nurses could not…

    Anyway, it was a very interesting but extremely disturbing experience. Fortunately for me my blood pressure did eventually diminish – I was moved to a private room where I almost immediately fell asleep. When I awoke I felt just fine – all hallucinations had disappeared.

    Anyway, I tell this tedious story to make it clear that I certainly would have chosen PAS during that stay in ICU if if it had been available and, if my treatment conditions had not improved before PAS would have been administrated, I would be able to make this point: I understand that hallucinations are fairly common for patients receiving high doses of pain medications – some appropriate methods of controlling for that condition should certainly be part of any PAS process.

    Link to this
  8. 8. sijodk 8:40 am 11/4/2012

    Will abuse happen? Of course it will. Just like pretty much every invention since the wheel and every law since Hamurabis has at some point been abused. Me, I’m pretty happy that we have wheels and laws, and I would love to see this option made available where I live.

    Link to this
  9. 9. jtdwyer 9:00 am 11/4/2012

    In the last paragraph of my prior comment, I’d intended to say that if PAS had been available… I would NOT be here to tell this story. BTW, since those two days in ICU I’ve been doing reasonably well and have been very happy that I haven’t died yet! Best wishes to all!

    Link to this
  10. 10. justmerightnow1 10:54 am 11/4/2012

    I am so absolutely sick and tired of hearing people tell *ME* what I can and can’t do with my life.

    If I ever learned that I had ALS (a condition where you lose all mobility and are a prisoner in your own body and where it is almost always terminal) I would want to die.

    I don’t want some creepy Brian Johnston standing next to me trying to convince me that I should endure this emotional and physical hell because he feels uncomfortable with the thought of me dying as I see fit. And then to have him continue to tell me that all I need is “counselling”.

    If you read Brian’s verbose comment above, what you will see is the same, tired, typical, pathetic arguments that all of those who are against euthanasia present: FEAR!

    Brian has tried his darnedest to make us all *afraid* of what will happen if we legalise euthanasia. It’s all FEAR tactics. *ALL* of his arguments are fear based — not one ounce of compassion and empathy for the human beings who are going through emotional and physical hell except for “Brian knows best”.

    Let *ME* do what *I* want with *MY* life, and stop patronising me suggesting that you know better.

    LEGALISE EUTHANISIA NOW, and put individuals in charge of their own lives and not have the BRIAN JOHNSTON’s of the world speak on behalf of us.

    SO PATRONISING.

    And then Brian says, “For very good reason the laws of society have not condoned intentionally killing those with a terminal diagnosis” WHAT IS HE TALKING ABOUT? Americans are so INSULAR. There are many countries, (yes, Brian, entire countries) that CONDONE euthanasia: Belgium, Netherlands, Luxembourg, Japan — and many countries including Canada that are now looking to legalise euthanasia with bills being introduced in early 2013). So, either you are lying or are ignorant in this regard.

    We euthanise animals all the time when we realise they are terminal and are suffering a great deal; and we say it is “humane”. Then, when it comes to humans, who arguably suffer MORE than any other animal because on top of everything else we get the added “gift” of contemplating our own mortality and death, we have people like Brian Johnston suggesting it’s more humane to let us SUFFER. We just need counselling and pain killers.

    OUTRAGEOUS!

    Brian, and all those like Brian: LEAVE ME ALONE!

    Link to this
  11. 11. Ilana_Yurkiewicz 1:40 pm 11/4/2012

    Thanks to everyone for the discussion so far. Perhaps this is a trite point, but in Mr. Johnston’s defense, I do want to point out that Death with Dignity is an issue where both sides are extremely well-intentioned. It seems clear that both sides are looking out for the most vulnerable: the terminally ill. We just disagree on the best way to do that.

    What’s usually nice about these discussions is that there are no bad guys — only disagreement about how to accomplish the *most* good.

    And please, just a general rule: no personal attacks.

    Thanks,
    Ilana

    Link to this
  12. 12. WaltFrench 4:32 pm 11/4/2012

    Shocking!!! An article that takes a position but respects those who differ with her!

    Link to this
  13. 13. jtdwyer 6:15 pm 11/4/2012

    I generally agree with your assessment of people’s intentions, but I must point out that large organizations often do not behave in ways that represent their constituents. In this case, I think it is possible that, in some conditions, governments, health care insurers and hospital administrators are quite capable of encouraging the use of PAS to minimize institutional costs of providing health care for terminal or even high risk patients.

    In some cases, young voters might be willing to explicitly sacrifice the collective cost of health care for the elderly population. Given, the increasing numbers of ‘baby boomers’ with increasing health care costs, I’m not even sure I could argue against the systematic use of PAS if economic conditions become dire enough. At some point, the well being of the (hopefully) productive population (including one’s own progeny) becomes more critical than the extension of life for us elderly! This not to mention that the population of the U.S. has doubled in my lifetime, not to mention the nearly trebling of the world’s population…

    Link to this
  14. 14. dwbd 6:28 pm 11/4/2012

    jtdwyer, come on now, it isn’t even remotely that simple to choose death with dignity, nor should it be. Nobody is gonna have a bad few days or few weeks, or even a few months and be able to walk into a doctor’s office and demand an end to the suffering. Yee be looking at a year or more of many consultations and referrals and alternatives offered before you will be allowed to make the final decision.

    And justmerightnow1 totally agree with you, and as I said the opponents of death with dignity are mostly hypocrites and contrary to what Ilana says ARE NOT well intentioned. Undoubtedly, some of them, a small minority actually practice what they preach, and actually make an effort to ease the suffering of the terminally ill, but most would happily let them die a torturous death, and demand not one penny of their tax dollars go to help the destitute and suffering. Easy to claim you believe in excellent palliative care for everyone, but when it comes to forking out the cash – it’s “..we have a debt crisis and can’t afford any of that..”

    Link to this
  15. 15. Geopelia 6:05 am 11/6/2012

    There has been some concern recently abut misuse of the Liverpool Care Pathway in British hospitals.
    It is alleged that food and fluids are stopped to hasten dying, and that funds are provided for hospitals that meet certain targets.
    Is this true, or just a rumour?

    Link to this

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