Avoiding advanced dementia, part 2

By Steve Phillips

Last week I wrote about one of my moral concerns regarding Norman Cantor’s proposal to avoid advanced dementia, which he views as being intolerably degrading, by using an advance directive stating that when he reached a certain level of dementia he no longer wanted to eat or drink so that his death would result. My concern with this was that the person caring for him would have to concur with him that his life at that time was no longer worth living in order to justify following his directive and cease to feed him and give him fluids to drink. An independent assessment that another person’s life is not worth living is required of any physician or other caregiver who participates in euthanasia or assisted suicide. Such a determination that another person’s life is not worth living is something that we should never do and the need for that determination is a fundamental reason why euthanasia is not permissible.

Dena Davis in her article “Avoiding Dementia, Causing Moral Distress” agrees with Cantor that a person ought to be able to use an advance directive to end his own life to avoid advanced dementia, but sees a flaw in Cantor’s plan. She writes, “As long as the demented person is enjoying her diminished life, it will be psychologically and emotionally difficult, perhaps impossible, for most people to withhold food or even simple medical interventions. Even if they believe they ought to comply with the advance directive, the moral distress is simply too great.” She concludes that since a person cannot rely on others to follow an advance directive like Cantor’s, the only way to avoid advanced dementia is preemptive suicide. The article “A Debate over ‘Rational Suicide’” in the New York Times describes 80-year-old Robert Shoots doing just that.

My second concern is that it is wrong for us to choose to end our own life by rational suicide even if no one else participates in that act. Autonomy and personal liberty are important, but there are some things that can be wrong to do even to ourselves. This is easier to see from a Christian perspective. Christians understand that our lives belong to God and we do not have the authority to end our lives. That authority belongs to God alone. We have been commanded not to kill any innocent human being because we have all been made in the image of God. That includes a command not to end our own lives.

It can be harder for someone who does not understand that his life belongs to God and has value because he has been made in God’s image to see why rational suicide would be wrong. However, all of us are relational beings. We are connected to our families and the rest of humanity. What we do to ourselves impacts others. Those who contemplate rational suicide to avoid things such as advanced dementia forget how their deaths impact others. They have a desire to avoid a part of life they do not want to live and may want to relieve those who love them from the burden of caring for them but caring for those we love when they become dependent is an opportunity for us to be more fully human. Caring for a loved one with dementia is very hard but is one of the ultimate expressions of human love. We should not take that away from those who love us.

Getting the Best Possible Organs for the Rest of Us

By Mark McQuain

A recent September 6th Perspective in the NEJM entitled “Voluntary Euthanasia – Implications for Organ Donation” teases with the following lead-in:“Canada now permits physicians to hasten the death of a patient by means of physician-assisted suicide or voluntary euthanasia. This development creates a new pathway for organ donation – and with it, some challenges.” Kudos to the NEJM marketing department for luring me into finally buying a full subscription. I’ll summarize some key points for those without a subscription.

The article begins by summarizing some differences between the comatose patient receiving end-of-life care in a standard ICU environment and the situation of individual intending voluntary euthanasia in a hospital. Healthcare teams may rely on surrogate decision making in the first instance but require first person consent in the euthanasia instance. Also, use of sedatives and analgesics in traditional end of life care are guided by the doctrine of double effect (intending comfort but not death) whereas physicians are not legally required to titrate those same medications in the instance of voluntary euthanasia (where euthanasia is legal). These issues are effectively the non-controversial portion of the article.

The heart of the article dealt with what one ought to do in the situation of a patient who wants to donate his or her organs “in the best condition possible” while receiving voluntary euthanasia. This would involve “procuring the patient’s organs in the same way that organs are procured from brain-dead patients (with the use of general anesthesia to ensure the patient’s comfort).”

The problem is that these patients aren’t brain dead yet. The authors are frustrated that awaiting brain death, even in voluntary euthanasia, results in sub-optimal quality of the donor organs. Harvesting organs from voluntarily euthanized patients before they are brain-dead “would require an amendment to the Criminal Code of Canada, which defines medical assistance in dying as the administration of a ‘substance’ by a qualified provider. By this definition, organ retrieval is not an accepted cause of death.” (N.B.- Though it most certainly is the cause of death!)

For those unable to retrieve the NEJM article, I offer a similar article by Dominic Wilkinson and Julian Savulescu supporting the same ethical argument (that it is OK to cause the death of an individual by harvesting their organs if they wished voluntary euthanasia). They summarize Dr. Robert Truog’s bioethical position (one of the authors of the present NEJM article) in footnote 66 as follows:

“Truog’s justification for ODE [Organ Donation Euthanasia] is different from that presented here [in our paper]. He argues that current concepts of brain death and the dead-donor rule are incoherent, and he proposes an alternative based upon the principles of autonomy and non-maleficence. We find Truog’s arguments compelling. Our paper can be seen as providing a complementary argument in favour of ODE. Truog favours a narrow definition for the group of patients who may consent to this procedure: only those who will die within minutes of withdrawal of life support, or who are permanently unconscious. Our definition of LSW [Life Support Withdrawal] donors overlaps with Truog’s, but includes the larger group of patients from whom it is permissible to withdraw life support in intensive care, and whose death is highly likely to ensue (though not necessarily instantly).”

To be blunt, what both groups are arguing is that it should be OK to surgically remove organs from an individual who is not brain dead though has already consented to voluntary euthanasia, knowing that the surgical removal of the organs will cause the immediate death of the individual. The priority of marrying euthanasia and organ donation is obtaining the best possible organs for the rest of us.

As a counter argument, I again turn to Wesley Smith for his thoughts in a recent National Review article similarly entitled “Canada Conjoining Euthanasia/Organ Donation”. It is short and to the point.

I must concur with Wesley Smith: The slippery slope of euthanasia is getting more slippery. How long before we grease those skids further by paying for the organs so harvested?

Avoiding advanced dementia

By Stephen Phillips

Norman Cantor has prompted widespread discussion with his recent article “On Avoiding Deep Dementia” in the Hastings Center Report (link is to the abstract only). In his article he states that he finds the possibility of living through progressive cognitive dysfunction and helplessness an intolerably degrading prospect. As a result, he has proposed using an advance directive stating that when he would reach a certain level of cognitive impairment, which would include having lost the capacity to make his own medical decisions, his advance decision to voluntarily stop eating and drinking would be implemented resulting in his death. He argues that it would be morally proper for those caring for him at that point to follow his prior instructions even if he showed no appearance of suffering at that point in his life.

There are many moral concerns related to Cantor’s proposal. I would like to address two concerns. Today I will address a concern that his proposal has in common with any form of euthanasia or assisted suicide that requires the assistance of someone other than the person who is choosing to die. In a later post I will address the issue of true rational suicide in which no assistance from a second party is required.

By proposing a strategy for avoiding advanced dementia that involves waiting until after he is unable to make decisions on his own, Cantor has required that someone other than himself who is providing care for him must implement his instructions. He sees that as respect for his autonomy, but whenever a second person enters into an act of euthanasia that person must make an independent decision that it is reasonable to agree that the life of the person who is to die is not worth living. This is true whether the act that is being requested of them is active euthanasia, assisted suicide, or cessation of eating and drinking. We are not morally obligated to do anything that another person requests of us. One qualification for fulfilling a request from another is that the request be reasonable. If there are any circumstances under which it is morally permissible to participate in ending another person’s life it could only be when that person’s life is no longer worth living. While it might be maintained that a person could make that determination about his or her own life, anyone assisting in that death needs to make an independent decision that the person’s life is not worth living in order to determine that this is a reasonable request which should be granted. However, we should never make a determination that another person’s life is not worth living. Our concepts of human equality, universal human rights, and justice all depend on the idea that every human life has value. All of that is undermined if we can say that there are some human lives that no longer have value.

Cantor’s proposal requires that someone caring for him after he has been become unable to make his own decisions agree with his previous determination that when his dementia reached that point his life would no longer be worth living and should be ended. That is something that we should never do.

Every Day is a Gift

By Neil Skjoldal

Into the genre of news reports about physician assisted suicide comes a powerful piece from The Washington Post.   It is the story of J. J. Hanson who was diagnosed with a glioblastoma multiforme.  It traces his difficult journey as it relates to PAS.  Because of the poor prognosis, treatments at times seemed too difficult.  His wife Kristen reported that “he told her that if he had had the lethal dose of medication on his bedside during his darkest of days, he might have used it and then missed out on three more years with his family.”  Her hopes now, since her husband’s death last year, are that lawmakers will “work to improve hospice and palliative care for patients” and “to encourage terminally ill patients to have hope and families to enjoy every moment they have together.”

I am aware that a story such as the Hanson’s will not convince those who are strongly committed to PAS. The argument would be something like, “That’s ok for him.  He died his way, just give me the freedom to die in my way.”  But, at the very least, this story provides a counter-narrative to some PAS advocates, who almost by default go to “I know a person who died very poorly and I want to stop that by helping them end their suffering.”

My observation in talking to people about this subject is that their greatest fear is dying with horrible suffering. Almost everyone can re-tell the story of a friend or loved one that died in this way.  For those of us who think that PAS creates many more ethical problems than it solves, our focus needs to be, as Kristen Hanson suggests, to continue to improve hospice and palliative care.  I am grateful for her courage in telling her story and am reminded that every moment of life should be precious to us.

PAS and “plain old” suicide

Last week, the folks from the Manhattan Declaration (whose key concern is freedom of religion) sent an email with a series of links—perhaps expanding their remit a smidge—one of which dealt with doctor-assisted suicide.  “Doctor-assisted suicide is contagious,” it said, along with this: “Doctor-assisted suicide increases overall suicide rates among the non-terminally ill everywhere it’s made legal.” And it also linked to a 2015 article on the subject from the Southern Medical Journal.

The SMJ authors were looking at whether overall and non-assisted suicide rates were different in states with legalized assisted death than in other U.S. states.  By their own admission, they did not have as much information as they would have liked.  They reviewed available information between 1990 and 2013. Two of the states were Vermont, which legalized assisted suicide in 2013 and had no cases that year, and Montana, which was not keeping count of assisted suicides.  That left them with assisted suicide data from Oregon (since 1998) and Washington state (since 2008).  (Since then, assisted suicide has also been made legal in Colorado, D.C., Hawaii, and California.)

In those two states, the total number of suicides and the number of non-assisted suicides had increased after the respective dates of legalization of assisted suicide.  However, the number of non-assisted suicides had also increased in the other states combined.  When I looked at their graph of the data, going back to 1990, there had been a decline in non-assisted suicide in Oregon, Washington, and other states between 1990 and 2000, with increases after that.  The number of these deaths per 100,000 population were higher in Oregon and Washington (and, indeed, much higher in Montana) than in the other states, but the slopes of the curves—the rates of increase—in Oregon and Washington looked similar to the other states.  Montana’s increase appeared sharply higher, but it’s hard to conclude anything about assisted suicide in that case because there were no data (nor for Vermont).

The authors commented that there had been estimates of how many surreptitious assisted suicides may have occurred outside of legalization, but admitted that firm conclusions were not possible.  They attempted to establish a statistical association between assisted suicide and nonassisted suicide, but the argument seemed inconclusive.  Follow the above link, read the article, and judge for yourself.

The core conclusion was that assisted suicide in its early years had not decreased overall suicide rates, as some of its advocates had argued it would.  Any relationship may become clearer as more information is available, assuming that numbers of assisted and non-assisted suicides are consistently and completely counted and recorded.  But that assumption is questionable at best.

In the meantime, it is important not to overinterpret limited data sets.  It’s also important to remember there are at least 5 reasons why assisted suicide is a bad idea:  it fundamentally alters the nature of medicine as a healing, life-preserving art and profession; its application cannot be reliably limited to those who freely request death or who are terminally ill (the slippery slope); it risks diverting energy and priority from true palliative care; if understood as a “right to die,” or a “right to be made dead,” it creates a duty for someone else to kill; and the notion of a “right to die” is self-contradictory if rights rest on preservation of life and well-being, as is the classical (i.e., pre-20th century) understanding.

In 2012, in his essay “Four Myths about Doctor-Assisted Suicide,” Ezekiel Emanuel wrote: “Patients themselves say that the primary motive [for assisted suicide] is not to escape physical pain but psychological distress; the main drivers are depression, hopelessness and fear of loss of autonomy and control. Dutch researchers, for a report published in 2005, followed 138 terminally ill cancer patients and found that depressed patients were four times more likely to request euthanasia or physician-assisted suicide. Nearly half of those who requested euthanasia were depressed.

“In this light, physician-assisted suicide looks less like a good death in the face of unremitting pain and more like plain old suicide. 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.”

And “plain old suicide” is, as we know, a problem that is getting worse all over the country.

More on physician-assisted suicide

Recently, Dr. Arthur Caplan of NYU, on the Medscape service (subscription required), took on the question of whether physician-assisted suicide (PAS) should be allowed for old folks just because they are old, or because they want to die together.  There have been reports of just that.  While he supports PAS for terminal illness but objects that PAS for “suffering” in general is just too fuzzy, and therefore rejects broadening it.  An accompanying poll of doctors reported:  64-36% against PAS for old age, but 69-31% in favor of PAS for terminal illness.  As some advocates of PAS, like the editors of The Economist, have pointed out in the past, however, this distinction is highly difficult to sustain:  if someone is suffering “intolerably,” who are we to overrule that person’s wishes based on a diagnosis of the cause of said suffering?

Better is to recognize, as Neil Skojdlal noted this week, that real palliative care is not PAS, but is the ethical alternative.  And as Mark McQuain noted this week, changing the terminology confuses, rather than clarifies, the issues.  At least Dr. Lo, whose New England Journal of Medicine editorial Mark reviewed, accepted that not all physicians will accept PAS or be willing to offer it or refer for it.  He seemed to make room for that—unlike some advocates.

In a related item, Hastings center president Mildred Solomon “Calls for ‘Moral Leadership’ to Improve End-of-Life Care.”  In essence, she argues that over-emphasis on “autonomy” can be a way for doctors to abdicate their responsibility, and leave patients out to dry without guidance in end of life decision making.  She argues for a more relational approach, rethinking social supports to provide people with broader help in late life.  Makes sense.  She doesn’t address PAS in the brief piece I’m citing here, but I would certainly leave that out of the list of recommendations.

A Rose By Any Other Name…

Dr. Bernard Lo, professor emeritus at the University of California, San Francisco and present President and CEO of the Greenwall Foundation, a foundation that sponsors bioethics research, wrote one of the lead editorials in the May 31st NEJM entitled Beyond Legalization – Dilemmas Physicians Confront Regarding Aid in Dying. His main point was that regardless of the physician’s position, given the increasing number of jurisdictions where “Physician Aid in Dying” (his term, hereafter PAD) is now legal, at some point the physician will probably be asked about the process, as well as their position, and whether or not they are willing to participate, so it is better for physicians to have answers to those questions prior to that doctor-patient discussion. I think it is perhaps more important to understand the terminology in which these issues are presently being discussed so I encourage your review of the short editorial in the link before considering my following concerns.

I believe the lumping of all terminal care into the moniker PAD confuses the issue. Physicians have always participated in their patient’s care, including the death of their patients. What is novel is the expectation that physicians will hasten the death itself. A physician treating a dying patient has always been legal. What is becoming legal is physician-assisted suicide (PAS), specifically causing the death via suicide that the terminal illness has, at that point, failed to accomplish. A physician directly administering an agent with the intent to cause death should be physician homicide (PH) or at least physician manslaughter (PM), though it is unclear why the adjective “physician” should change the criminality of the event.

At one point, Dr. Lo appears to include Palliative Care within PAD but later clearly identifies them as distinct and separate options in his provision for patients with terminal illness. This is especially so given his statement that “perceived loss of autonomy and dignity is now a more common reason for requesting PAD than inadequate pain control.” If PAD simply was the preferred term for general end-of-life care then palliative care would obviously be one component. Since it is not, then Dr. Lo is really talking about PAS and he should use the term PAS rather than PAD and be honest about it.

Finally, Dr. Lo discusses the need to consider adverse outcomes “such as deciding whether to call 911 if distressing symptoms develop after lethal medications are ingested.” What does he expect 911 to do? I am assuming he wants their assistance in stopping the suicide process, nevermind that it was physician assisted. If a growing number of physicians are henceforth going to be expected to actively kill their patients, surely we can all agree to keep 911 as an emergency response unit of healthcare providers unambiguously dedicated to keeping their patients alive? A call to 911 seems a tacit admission that supporters of PAS aren’t exactly certain or in common agreement as to what euthanasia (“a good death”) or “Death with Dignity” is supposed to look like, and, perhaps more importantly, an admission that no one can control the dying process as well as they may believe they can. By the way, what does Dr. Lo mean by “distressing symptoms”? I thought the reason for providing PAS was that the original terminal process wasn’t going as desired and this was causing “distressing symptoms”. If the addition of PAS can cause more distressing symptoms, what has been gained through PAS? Certainly not euthanasia or “Death with Dignity”.

Discussing whether or not a physician should hasten their patient’s death for any reason is unfortunately a necessary debate given the present diversity of world views in our society. Describing that process in less specific terms such as “Physician Aid in Dying” does nothing to help that discussion. Like Neil Skjoldal said in yesterday’s blog entry, I also will “continue to advocate strongly against PAS, affirming God’s gift of life whenever and wherever I can.”

Physician Assisted Suicide, Again

Last month, I sat through a presentation on the ethics of Physician Assisted Suicide (PAS) in a local hospital.  I attended the presentation, not because I am unfamiliar with the arguments on the subject and ambivalent about my feelings on it, but because I wanted to observe how it was presented, what the reaction of the audience was to the presentation, and how it might affect my work as a hospital chaplain.

For some context, the state where I reside, Florida, does not have a PAS law on the books, nor, according to the “Death with Dignity” website, is it even considering one.

I found the presentation to be disappointing, in part because the participants talked past each other as if they were on a cable news program, repeating the typical talking points that have become so common over the years.  It was also disappointing because it used the classic example of a sad, horrible death story to advocate the use of PAS with the highly manipulative question, “You wouldn’t want your loved one to experience this, would you?”  No one ever seems to respond that we cannot build a law out of such experiences because hard cases make bad law, nor does anyone ever take the time to wonder what else could have been done to make the suffering patient more comfortable.  It simply is an elevation of human autonomy to a staggering height.

At the end of the presentation, the PAS advocate asked for a show of hands on people’s support/non-support of PAS.  I didn’t have the heart to count the hands, but the speakers said it was about 65%-35% in favor of PAS.  My worst fears had been confirmed.  After what I witnessed in that presentation, I have no doubt that we are headed full-speed ahead towards a civilization that will in some way systematically encourage its elderly, its weak, its sick, and its disabled citizens to make a “compassionate choice” and choose “death with dignity.”  Those of us who think otherwise are firmly entrenched in the minority.

I understand that I am not the first person to have had this experience, and in some ways I have anticipated this day for some time, but because I saw it so close to home, it still was somewhat shocking to me.   When filling out the seminar evaluation, I found the question, “How will apply what you have learned today to your current practice?”  I’m not sure what the reviewers thought, but my response was simple: “I will continue to advocate strongly against PAS, affirming God’s gift of life whenever and wherever I can.”

A pause for doctor-assisted suicide in California

Readers of this blog probably saw this week’s news that a California judge blocked the state’s End of Life Options Act, the one that legalized doctor-assisted suicide in California.  The law passed after apparent failure in a regular California Legislature session, when its sponsors brought it up again in a special session that was supposed to be about Medicaid funding.  The judge said that inserting the assisted suicide law into that session violated the California state constitution.  So doctor-aided suicide is on hold in the state, for the moment.

Sort of a technicality, and celebration of the decision by folks (like me) who are staunch opponents of assisted suicide is likely to be short-lived.  Supporters will certainly challenge the ruling on appeal, perhaps win, perhaps also bring up the law anew in the Legislature, with (re)passage all but certain.

Legal assisted suicide is still bad policy, and assisting another’s suicide is still unethical.  But efforts against it have to address the attitudes and perspectives of our fellow citizens.  Allowing doctors and others to aid suicide poisons the central calling of medicine to protect life and to address human suffering accordingly.  It risks undermining proper palliative care.  It creates a “duty to kill” that someone has to step up to fill—or to be conscripted to fill, against moral objections that will be rejected as “inconsistent with standards of medical practice.”  It cannot logically be limited to the terminally ill (see Steve Phillips’s May 9 post on this blog) and cannot be reliably limited to those who freely and willingly choose death.  And it opens the idea of “rights” to misuse by those who desire death and to misappropriation by those who have reason to think that someone else should desire death.

Opposing assisted suicide is a longer undertaking, more than one vote or even series of votes, more than a court case with appeals.  It requires the cultivation of moral virtue by ourselves and our posterity.  It requires humble compassion subject to valuing the sanctity of human life.  It requires changed hearts.

Choosing to die

When people present an argument for the moral permissibility of euthanasia they commonly start with a case in which a person is suffering from a terminal illness and has uncontrolled pain. They say that we should have no moral reason to say that it is wrong to assist those in such a condition who choose to end their life as a means of ending their suffering. This is a combination of two arguments. One is the argument from compassion that says that we have a moral obligation to minimize suffering and that euthanasia should be used if it is the most effective way to eliminate a person’s suffering. The other is the argument from respect for autonomy that says that people should be able to make decisions about their own lives, which should include the decision to end their lives, and that their physicians should respect those decisions. It has been pointed out by many who take the position that euthanasia is wrong that if these are good arguments for the permissibility of euthanasia they should be able to stand on their own. If we take these arguments individually, they lead places we should not want to go.

A couple of weeks ago I wrote about the concerns that many who live with disabilities have regarding the argument from compassion. It says that it can be the right thing to do to end a person’s life when that life is no longer worth living. They are concerned that if they become unable to make their own decisions someone will decide their lives are not worth living and they will be euthanized nonvoluntarily.

A recent case of joint euthanasia by a married couple in their mid-nineties in Canada reported in the Globe and Mail shows what can happen when the argument from respect for autonomy is taken by itself. George and Shirley Brickenden, who had been married for nearly 73 years, choose to die together. They died by lethal injection while lying on their bed holding hands in the presence of their children and clergyman. There was question about whether they both met the criteria of the Canadian law, which requires that the person receiving assisted death be suffering intolerably from a grievous and irremediable condition and that death is reasonably foreseeable. Even though Shirley suffered from long-standing rheumatoid arthritis and heart problems and George had recently begun having fainting spells from a heart rhythm problem, the primary reason for choosing euthanasia was that they did not want one of them to die and leave the other behind.

If the argument from compassion is a reason to accept euthanasia then we must accept nonvoluntary euthanasia in spite of the concerns of those with disabilities. If the argument from respect for autonomy is a reason to accept euthanasia then we must accept euthanasia for any reason given by a rational person including the desire of a married couple not to have one spouse survive longer than the other.

Rather than going to these extremes it seems reasonable to accept that there are limits to the things we ought to do to diminish suffering and there are limits to how far we should go in respecting a person’s autonomy. The intentional killing of an innocent person lies outside those limits.