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Unofficial Prognosis

Unofficial Prognosis

Perceptions and prescriptions of a medical student

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

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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.

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

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