The right to die has played a critical role in the development of the doctor/patient relationship. It was families clamoring for the right to allow their loved ones to die who forced the world to recognize that physicians’ medical decisions aren’t just medical decisions, but involve enormous value judgments. In 1975, Karen Ann Quinlan’s loving parents asked her doctors to remove her ventilator, Quinlan having suffered irreversible brain damage that put her in a persistent vegetative state. Her doctors refused, saying such an action was medically inappropriate. The New Jersey Supreme Court, and the majority of the lay public, concluded that the doctors were exceeding their authority, in making moral judgments about whether Quinlan should live or die.
When I tell people Quinlan’s story (for example, in my book Critical Decisions), I present it as an example of the distinction between medical facts and value judgments. Physicians typically hold expertise about medical facts – about whether people like Quinlan in persistent vegetative state can experience pain or joy; about whether or not her ventilator was prolonging her life. But decisions about whether to keep Quinlan on the ventilator are value judgments, and physicians have no special expertise, or power, to make these decisions.
As it turns out, I’m partly wrong about the distinction between medical facts and value judgments. Recent research on, among other things, people’s attitudes towards robots has shown that sometimes medical judgments – whether, say, a person with persistent vegetative state can experience pain – are influenced by our moral thinking. Sometimes, when our moral sensibilities are offended, we attribute feelings and intentions to beings incapable of harboring such states of mind.
In one study, for example, the researchers described persistent vegetative state to participants. They explained that people in PVS have no conscious awareness – cannot experience pain or joy, and are unaware of their surroundings. They then asked participants to imagine that a nurse was purposely disconnecting a patient’s feeding tube at night, hoping the patient would die so the relatives would get their inheritance (and pass part of that inheritance to the nurse). Pretty evil, yes? I agree. And because of the evilness of this act, people began attributing feelings to the patient with PVS. When some humanoid thing is harmed, we recognize the immorality of those harms. Consequently, many of us begin attributing feelings and thoughts to the person or thing being harmed.
How do I know that it was the evilness of the act that caused people to believe that the patient with PVS could experience pain? Because another group of people were given the same scenario, but were told that the tube feedings were interrupted at night by accident, due to a technical error. This group of participants were significantly less likely to attribute states of mind to the patient.
Not convinced? (To read the rest of this article, please visit Forbes.)
Thanks to the popularity of medical television shows, most people have witnessed hundreds of fictional cardiac arrests in their lifetime. In most of these scenes, the patient loses consciousness, and the medical team rushes to the bedside:
“He’s in V-fib.”
“Get me the paddles.”
The team performs urgent chest compressions for a few seconds. Then they place the metal paddles on the victim’s chest:
The patient’s heart is back to normal again, tragedy avoided.
On television, the outcomes of in-hospital resuscitations are commonly miraculous. According to a New England Journal study from 1996, over 75% of “patients” who received CPR on popular television shows were brought back to life by the treatment with good outcomes — brains intact; ready to go. In real hospitals around that same time, only 15% of patients experienced such good outcomes. The vast majority of patients who experienced cardiac arrests in the hospital back then didn’t survive resuscitation efforts, and many of the ones who did survive, whose hearts were successfully restarted, still ended up either dying before leaving the hospital, or sustaining major brain damage.
That was then, though, and now hospital code teams have a new weapon in their resuscitory arsenal. That weapon is known as therapeutic hypothermia. (Read more and view comments at Forbes.)
World-famous physicist, Stephen Hawking, is now advocating in favor of physician-assisted death, in the video shown here. I am both very glad that he is still alive, so many years after developing his illness, and that he is advocating for those people who circumstances and suffering leads them to request assistance in ending their lives. These are never easy issues, as the back and forth over my recent blog posts on this topic have shown. But not everybody with ALS can draw upon the intellectual, emotional and financial resources that have helped Stephen Hawking live so long with this condition.
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I thought I would share this wonderful poem with you:
For eleven years I have regretted it,
regretted that I did not do what
I wanted to do as I sat there those
four hours watching her die. I wanted
to crawl in among the machinery
and hold her in my arms, knowing
the elementary, leftover bit of her
mind would dimly recognize it was me
carrying her to where she was going.
– Jack Gilbert
Nothing more to say…
The Centers for Disease Control and Prevention defines suicide as: “Death caused by self-directed injurious behavior with any intent to die as a result of the behavior .” The Merriam-Webster dictionary defines it as: “the act or an instance of taking one’s own life voluntarily and intentionally especially by a person of years of discretion and of sound mind.” By both of those definitions, the act of a terminally ill person ingesting an overdose of pills with the intention of ending their life would qualify as suicide.
To that extent, Kathryn Tucker, in her response to my earlier post, was wrong to characterize my use of the term “physician assisted suicide” as being “inaccurate.”
Instead of the word “assisted,” she prefers the word “aid.” But logically and technically, I cannot see a difference between “physician assisted suicide” and “physician aid in dying.” Nor do I see a moral difference. As I pointed out in my post, I have been a long time supporter of people’s rights to end their lives when they are suffering from terminal illnesses, and of the appropriateness of physicians helping them do this.
But Tucker made some outstanding points in her essay, ones I am very grateful to have learned from, and ones that are very much in the spirit of my original post. She points out that the way people perceive words matters, separate from the specific definition of those words. She points out that the word “suicide” is stigmatized. Many, perhaps most, acts of suicide are the acts of people who are not in their right state of mind. Most of us physicians are trained, correctly, to see suicide as a warning that a patient needs help, and to treat suicide as something to prevent rather than assist in.
I cannot dispute when a terminally ill person says that describing them as suicidal is “disrespectful and hurtful.” But I can tell you this. I did not use the word suicide with any intention to be disrespectful or hurtful. The goal of my essay was to point out that it’s a mistake to equate a person ending their own life with the concept of dignity. It can also be dignified not to end one’s life. It can be dignified to fight all the way to the end, with the most aggressive possible care. It can be dignified to enroll in hospice care, and die naturally without taking any substances that hasten one’s end. And yes, it can be dignified for a terminally ill person to take control over their own destiny, and ingest medications that end their life.
Thanks to Kathryn Tucker, I will not use the phrase physician-assisted suicide again, except to make sure people understand that the phrase carries connotations that are unnecessarily pejorative.
The below post is a response to my article Death With Dignity Should Not Be Equated With Physician Assisted Suicide by Kathryn L. Tucker, JD. My own thoughts on her response are here.
In a Forbes.com oped, “Death With Dignity Should Not Be Equated With Physician Assisted Suicide, Duke University physician Peter Ubel writes: “I think it is wrong-headed to equate assisted suicide with the concept of a dignified death.”
Dr. Ubel’s use of the inaccurate, value-laden term “assisted suicide” to describe a terminally ill patient’s choice to shorten a dying process that the patient finds unbearable – as some journalists also wrongly do – is concerning. Words matter.
Medical, health policy and mental health professionals recognize that the term “assisted suicide” is inaccurate, biased and pejorative in this context. Increasingly, these organizations have adopted the more accurate and neutral term “aid in dying” to refer to this choice.
The nation’s largest public health association, theAmerican Public Health Association, adopted a policy supporting aid in dying, recognizing that: “the term ‘suicide’ or ‘assisted suicide’ is inappropriate when discussing the choice of a mentally competent terminally ill patient to seek medications that he or she could consume to bring about a peaceful and dignified death.” The policy emphasizes: “the importance to public health of using accurate language.” The American Medical Women’s Association has adopted similar policy, as have a number of other national medical organizations.
A growing number of states, including Oregon, Washington, Montana,Vermont and Hawaii, permit mentally competent, terminally ill patients to obtain medications they can ingest to bring about a peaceful death if their suffering becomes unbearable. The Oregon, Washington, and Vermont lawsclearly state: “Actions taken in accordance with [the Act] shall not, for any purpose, constitute suicide, assisted suicide, mercy killing or homicide, under the law.”
Terminally ill patients do not want to die but are facing an imminent death, most after long efforts to cure their illness and heroic efforts to palliate symptoms. Despite excellent pain and symptom management, some find the dying process unbearable and want to achieve a peaceful death. Patients who can choose aid in dying do not consider that they are committing “suicide,” and find the suggestion that they are deeply offensive, stigmatizing and inaccurate. Many have publicly expressed that the term is hurtful and derogatory to them and their loved ones.
“All I am asking for is to have some choice over how I die,” wrote terminally ill patient Louise Schaefer in a letter to The Sacramento Bee. “Portraying me as suicidal is disrespectful and hurtful to me and my loved ones. It adds insult to injury by dismissing all that I have already endured; the failed attempts for a cure, the progressive decline of my physical state and the anguish which has involved exhaustive reflection and contemplation leading me to this very personal and intimate decision about my own life and how I would like it to end.”
Dying patients who choose aid in dying want to live, as evidenced by the fact that more than one-third of these terminally ill patients don’t ingest the medication even after they obtain it. But they derive great comfort knowing they have that option. For those who do take the medication to achieve a peaceful death, they have been able to cross the threshold to death in a manner consistent with their values and beliefs, and consider this choice to have enabled them to exercise a final act of autonomy consistent with how they have lived their whole life.
As noted philosopher and law professor Ronald Dworkin observed in his book Life’s Dominion (Knopf 1993): “…we live our whole lives in the shadow of death…we die in the shadow of our whole lives….We worry about the effect of life’s last stage on the character of life as a whole, as we might worry about the effect of a play’s last scene or a poem’s last stanza on the entire creative work.” We ought not insult and diminish this choice by applying an inaccurate, pejorative term. Words matter.
Kathryn L. Tucker, JD, is the Director of Advocacy & Legal Affairs for the nation’s leading end-of-life advocacy, education and support organization, and teaches Law, Medicine and Ethics at Loyola Law School in Los Angeles.Compassion & Choices
In 2008, the state legislature of Washington passed what was called the Death with Dignity Act, a law that legalized physician assisted suicide. Under the law, terminally ill patients (predicted to have less than six months to live) can request prescriptions for lethal medications from their physicians, under a series of safeguards: multiple requests for example, determination of competency, and the like. Then, if the patients so choose, they can ingest the pills at the time of their choosing, thus controlling the manner and location of their demise, a last act of control in the face of an otherwise debilitating illness.
I have no beef with the letter or spirit of Washington’s law. I have long contended that in rare circumstances, physician assisted suicide is a compassionate and morally appropriate policy. Nor am I worried about the way the Washington law has worked in practice. Indeed, a New England Journal of Medicine study from April demonstrates that patients have chosen assisted suicide sparingly, and without undue coercion from clinicians urging them to “off themselves”.
My beef is not with the letter of the Washington law, it’s with the name. I think it is wrong-headed to equate assisted suicide with the concept of a dignified death. Such a link unduly narrows the concept of dignity, and potentially undermines our ability as clinicians to help patients find other ways of achieving a dignified death… (Read more and view comments at Forbes)