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.

Euthanasia and those who live with disabilities

This week the students in the medical ethics class that I teach are looking at the issue of euthanasia and physician assisted suicide. An article in The Catholic Register reminded me of the important role that people with disabilities have played in the public discussion of euthanasia. The article discusses the concerns that Taylor Hyatt, policy analyst and outreach coordinator for the disability rights group Not Dead Yet, has expressed about assisted suicide in Canada. She is concerned about proposals being considered to expand the Canadian Medical Aid in Dying (MAiD) law “to include mature minors, allow advanced directives for those with a dementia diagnosis, and allow MAiD for those with psychological suffering without the necessity of death being reasonably foreseeable.” She also expressed concern that under the present law no one is looking to see if those seeking assisted death have unmet accessibility needs that are pressuring them to end their lives.

From the earliest discussions about legalizing physician assisted suicide in the US, disability rights groups have played a significant role. They recognize that with any form of euthanasia the physician who chooses to assist in causing another person’s death must agree that the person’s life is not worth living. If we say that it is ever permissible for one person to say that another person’s life is not worth living, then it opens the door to people thinking that a the life of a person with disability is not worth living and that it would be best if that person’s life would be ended. Thus, even fully voluntary euthanasia puts those who are disabled at risk for nonvoluntary euthanasia. Actually many more than those with disabilities are at risk, but the marginalization that they experience makes them more sensitive to the risk.

We should listen to them.

The death and resurrection of Jesus and how we view death

This is the week when we who are Christians particularly focus on the death and resurrection of Jesus. As I have been reflecting on this I have been thinking about how Jesus’ death and resurrection impact how I think about bioethics. I think that the largest impact is on how I think about death.

Whether we realize it or not, much of bioethics is impacted by how we view death. This is most clear when we are thinking about end-of-life issues. Some of the most difficult medical decisions that people must make are related to how aggressively we should try to prevent death and when we should accept the inevitability of death and focus on palliative care. However, it also impacts beginning of life and reproductive issues, because many times those issues are significantly impacted by our understanding of who has the type of moral status that says we should not cause the death of that person. It is also the foundation of transhumanist desires to go beyond the limitations of human mortality.

How does Jesus’ death impact how I think about death? It reminds me that death is the result of evil and may involve deep suffering. It was not a part of God’s original good creation but is a part of the brokenness of that creation caused by human sin. It reminds me that we have a God who understands what it means to suffer and die and can truly love us with a compassionate love. Jesus’ resurrection reminds me that he not on the understands death but has defeated it. We who follow him can know that death is not the end. We have a hope that goes beyond death that changes how we think about it.

Understanding God’s compassionate love for us can help us live with a deeper compassion for those around us. Having a hope that goes beyond death and an understanding that there can be meaning in suffering allows us to face the reality of our own deaths without fear. When we are at peace with our own death we can better help others, who are dying. We can understand that death itself is evil and that it is good for us to develop medical treatments and administer them to people in order to prevent death, but also understand that preventing death is not our ultimate goal because we can have a relationship with God that is eternal.

The Bioethics of a Modern Death Mask

By the time you read this, a company called Nectome will have pitched its business plan to investors at Y Combinator as a company who has designed a technology called Aldehyde-Stabilized Cryopreservation to preserve all of your connectome, which is all of your brain’s interconnected synapses. Doing this, they argue, can preserve your memories, allowing the company to effectively “upload your mind”. One problem with the technology is that the process is 100% fatal as you have to die during the cryopreservation process to make an accurate connectome.

Oddly, the fact that you have to die for the process to be successful is not considered a deal breaker. Twenty-five individuals have already plunked down the $10,000 deposit to be first on the list to eventually have their brains perfectly preserved in this manner. The process also depends upon future scientists being able to figure out a way to use these perfectly embalmed brains to “reboot” their consciousness. Never mind that no one presently knows how that rebooting process might work or whether the present process captures everything that will be necessary some 100 years in the future when the complete technology will hopefully actually exist. Presumably, smarter people will have all of that detail eventually worked out. What is important at present, particularly if you have a terminal disease, is to preserve your brain so you can be rebooted in the future. A new state law in California called the “End of Life Option Act” makes the application of this novel technology legal for terminal patients (at least as best as can be determined as the legal details have yet to be tested in court). A very nice overview of this new technology and the new company itself may be found in the latest Technology Review article by Antonio Regalado.

There are scientists, such as neuroscientist Ken Hayworth, president of the Brain Preservation Foundation, who believe that a connectome map could provide the basis for reconstituting a person’s consciousness. At its base, this theory assumes that the physical brain is not only the necessary but presumably the sufficient source of consciousness. Capturing the synapse pattern would certainly be essential for recreating the hardware (and perhaps the software) of the brain to restart one’s electrical pattern leading presumably to rebooting one’s consciousness.

I have a couple of ethical problems with this technology, though I am sure there are more. The most obvious is that the process hastens the death of the individual, regardless of their terminal illness. The person will not be dying from their illness but from the cryopreservation process. This technology would not be legally possible without the new California law that will ascribe the death to the terminal illness rather than Nectome’s cryopreservation process, presumably shielding Nectome from product liability suits. Only in California could a terminal patient’s family sue the manufacturer of their vehicle for a malfunction in the brakes that resulted in their loved one’s premature death as they were in the process of driving their loved one to a Nectome facility to die by brain cryopreservation with the hope that the loved one could live again.

Another ethical problem is the transhumanist lure of a brain being rebooted, effectively allowing immortality of one’s consciousness. Aside from the presently unproven science of the rebooting process, who would be the recipient of the successful rebooted consciousness? By that I mean “who” (or what) is regaining consciousness? If the physical brain is the basis for consciousness, and recreating a new but exactly reproduced connectome is the thing that becomes conscious, would it really be you becoming conscious, or someone or something else entirely? Who really enjoys the rebooted memories? What if it is not really you that is being rebooted but someone or something else with your life’s memories? This would be the worst “bait and switch” advertising scam ever devised! What till the FTC begins filling suit. But seriously, are we just our consciousness or a necessary combination of physical mind and body, or a necessary combination of spiritual soul and physical mind/body? What exactly are we? Why do we think we can achieve immortality in the first place? If we can, is the Nectome method the right way of going about this process?

The Christian faith argues for a different process, but uses language such as “dying to self” and being “born again”, which sound similar to Nectome but are indeed very different. Per Nectome, if you die, using our cryopreservation technology, you can live again by regaining your consciousness in the future. The biblical concepts of being born again and dying to self reflects a believer having faith in the salvation offered by Christ’s death on the cross and subsequently humbly subjecting oneself to God’s will rather than one’s own will for the future, both temporally on earth and eternally in heaven.

I recommend the Christian process of being born again rather than the modern death mask soon to be offered by Nectome.