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.

Doctor-assisted death: resisting the slippery slope

The New England Journal of Medicine has two new “op-ed”-style pieces raising concerns about extending physician-assisted suicide (PAS) from people with end-stage terminal illness to people who may express a desire to die because of (non-terminal) mental illness.  (Regrettably, both require subscription access.)  PAS in these cases is being exercised in Belgium and the Netherlands, and is being considered in Canada

In one article, the authors label PAS for psychiatric patients “misguided public policy,”   Although patients may be suffering terribly from, say, severe depression, they may be victims of “distorted cognition” that leads them to see their lives as worthless.  This, the authors argue, is a manifestation of the mental disease—so, in a sense, it’s not “healthy” or “real” (my words, not theirs).  In essence, the patient is not somehow mistaken about his suffering—rather, it’s potentially treatable.  Unless in some cases it’s not, I suppose, in which case it’s not clear how the authors would resolve that.  Oh, and in the absence of universal health insurance (a problem that the Dutch and Belgians and Canadians all avoid, they allow), some miser might see PAS as a convenient way to save a few bucks—or quite a few, for that matter.

Some suicidal psychiatric patients may indeed make “rational and autonomous” (the authors’ phrase, not mine) decisions for PAS, but doctors might make diagnostic mistakes and “let other patients slip through.”  Must such mistakes be accepted, as a sort of “collateral damage” for an otherwise desirable policy?  No, the authors say; to allow PAS for psychiatric patients contradicts “physicians’ commitment to preserving life and preventing suicide.”  To this last point, I might offer an “Amen.”

In the other article, a Dutch doctor argues that there, and in Belgium, the PAS regime is simply too lax.  For PAS to be ethical, he argues, it must be a last resort.  But no such safeguards are in place there, and, indeed, eligibility for one form of treatment—deep brain stimulation—requires a more stringent evaluation than PAS does.  The author of this article would permit PAS for psychiatric patients not only if all treatment options had been considered, but “only if the patient had not refused a reasonable treatment option” (emphasis mine).

So much for autonomy, I guess.  Back to a (welcome?) paternalism that recognizes the doctor’s calling is first to care for and preserve life?

The second author concludes that PAS should be considered only in parallel with “recovery-oriented care,” to ensure “that there is a treatment advocate involved, [that PAS is not] used as an escape for an overwhelmed physician, and [that] the focus of care [is not] narrowed down to death.”

Um….yipes?

Belgian Euthanasia: Volunteers No Longer Necessary?

A recent resignation letter by one member of Belgium’s Euthanasia Commission suggests the slippery slope of who meets the criteria for legal euthanasia is becoming even more slippery. Dr. Ledo Vanopdenbosch sent his resignation letter to members of the Belgian Parliament who oversee the commission. His concern was with one of the main requirements of the law, which demands that the individual patient formally request euthanasia. Vanopdenbosch claims euthanasia occurred on a psychiatric patient without his or her request. His resignation has generated substantial concern not only because Vanopdenbosch is a committee member but also because he is considered a strong advocate of euthanasia. Here is the AP article in Voice of America with the details.

One of the main tasks of the Belgium Euthanasia Commission is to review every euthanasia case to make sure each case meets the legal criteria necessary for euthanasia. Any case in doubt is referred to the public prosecutor’s office. It is perhaps telling that in the last 15 years since legalization of euthanasia in Belgium, over 10,000 individuals have been euthanized but only one case has been referred to prosecutors by the commission with the concern that it may have been performed illegally. Vanopdenbosch argues that the commission is acting in place of the courts, a potential conflict of interest given that those on the commission are generally considered strong supporters of euthanasia. In addition to the slippery slope metaphor used earlier, one might also add that the foxes are guarding the henhouse.

An internal review of this particular case resulted in the committee claiming that what really happened was an accidental death related to palliative care rather than actual involuntary or non-voluntary euthanasia, as is claimed by Vanopdenbosch. The general population will never know, as commission protocol and privacy concerns prevent the details of the case from ever reaching the light of day. In absence of further details, one wonders whether the alleged palliative care for the unknown psychiatric condition was formally requested by an otherwise competent patient or just provided absent his or her formal consent but “in his or her best interest” by the patient’s physician or caregivers.

It is presently unknown whether or not Dr. Vanopdenbosch’s resignation will result in any changes in the structure, function or transparancy of Belgium’s Euthanasia Committee. At the very least, one would expect to see an increase in referrals to the public prosecutor’s office for legal oversight. It is simply unbelievable that the committee has only encountered one case out of 10,000 cases that they found sufficiently suspect to refer to prosecutors for legal review. Perhaps more importantly, I want to believe that even those supporting euthanasia would be against all forms of non-voluntary euthanasia, particularly involuntary euthanasia. Sadly, I am naive. In our post-modern world, how can any death be a “good death” unless, at the very least, the competent patient in question so stipulates?

(For an excellent recent YouTube interview containing a brief history of euthanasia, please see this link of an interview with Dr. Richard Weikart, Professor of History at California State University, Stanislaus. Some highlights: at 10:40 where he touches on Belgium and psychiatric euthanasia, at 19:00 where he discusses the slippery slope argument, and at 21:30 regarding non-voluntary euthanasia)

Does the possibility of misdiagnosis make the concept of brain death invalid?

Recently I read the detailed account of what has happened with Jahi McMath, titled “What Does It Mean to Die?” in the most recent issue of The New Yorker. It made me reassess what I think about the concept of brain death. Four years ago, Jahi McMath was a thirteen-year-old African American girl who had a tonsillectomy to treat severe sleep apnea. She had a cardiac arrest due to postoperative bleeding with a prolonged 2.5-hour resuscitation and ended up on a ventilator. She was later determined to meet the criteria for brain death, but her family refused to allow her to be taken off the ventilator. They had serious concerns that she had not received the care she should have received prior to her arrest and had little confidence in the doctors or hospital that were telling them that she was dead. Four years later her vital functions continue to be maintained on a ventilator and some medical experts are convinced that she no longer meets brain death criteria and may be in a minimally conscious state.

When I think about the concept of brain death, what is important in accepting it as a valid way to determine that a person is dead is that brain death involves both loss of function of the entire brain including the brain stem and that the loss of function is irreversible. Accepting that loss of cognitive function alone could define death puts anyone with impaired cognitive function at risk of being treated as if they were dead. Loss of brain stem function is more closely related to the functions of the brain that keep us alive and fit better with the determination of death. However, it is critical that this loss of entire brain function is irreversible. We do not consider a person in cardiac arrest who is able to be resuscitated to be dead, because that person’s loss of heart and lung function is reversible. This case calls into question whether we are able to determine that loss of complete brain function is irreversible.

It appears to be quite possible that this girl who was diagnosed as being brain dead did not have the irreversible loss of complete brain function that is essential for the definition of brain death. It is recognized that the criteria for diagnosing brain death are different in children and adults and that the diagnosis may be more difficult to make in children. Her case leaves us with some significant questions. Are the criteria that we have for determining a diagnosis of brain death accurate enough in predicting the irreversibility of loss of whole brain function to be reliable in making the diagnosis? Do we need absolute certainty in diagnosing brain death? Every decision we make in medicine involves some uncertainty. Diagnoses are seldom absolute. We make life or death decisions with limited information. People die due to inaccurate diagnoses even when everything has been done properly and the diagnosis has been made with all due care. Sometimes, despite our best efforts, we are wrong. Is diagnosing brain death any different from other life or death decisions we make? How much inaccuracy can we accept in the diagnosis of brain death?

What’s really happening with doctor-assisted suicide?

Recently, Wesley Smith posted on the National Review’s “Corner” blog new concerns that Oregon’s “Death With Dignity” law may not be as tightly regulated as advertised.  Specifically, a Swedish fellow named Fabian Stahle, who evidently is troubled by the prospect that his country might embrace doctor-assisted suicide, claims to have carried out an e-mail exchange with someone in the Oregon Health Authority to ask how the law is interpreted in that state.  The responses included a statement that, to qualify for assisted suicide, a patient must have a “terminal illness” but said illness could include a potentially treatable condition which, if allowed to take its course without treatment, would be expected to cause death within 6 months.  That suggests that assisted suicide might be legally employed in Oregon in cases in which the patient refused treatment or the patient’s insurance company refused to pay for effective treatment.  The Oregon official cited by Mr. Stahle is quoted by him as having written that “the law is best seen as a permissive law…[that] does not compel patients to have exhausted all treatment options first, or to continue current treatment.”

You can read Mr. Stahle’s entire account here.

I must say that, while I mention this for this blog, I have not attempted to confirm these assertions by contacting the Oregon officials myself, and my first reaction is skepticism that what Mr. Stahle reports is in fact the correct interpretation of the Oregon law.  Even I, a staunch opponent of assisted suicide, must allow that the intent of such laws seems to be that assisted suicide is intended for cases for which potentially effective treatment options HAVE been exhausted.  But I suppose that further investigation is in order.

While at it, Wesley Smith also cited a 2005 British House of Lords inquiry into the Oregon law, from which a group apparently opposed to assisted suicide posted some comments here.  The entire House of Lords transcript, BTW—all 744 pages of it!—is available here for interested parties.  I must confess I have not had time to read the whole thing.

The most recent data summary from the state of Oregon that I am aware of is for 2016.  It reports 133 deaths from taking drugs from 204 lethal prescriptions filled in the state in 2016.  These numbers were slightly down from 135 and 214 in 2015.  The 2016 “death with dignity” rate is cited as 37.2 per 10,000 deaths in Oregon.  Of the 133 people who died with medical assistance in Oregon in 2016, 96% were white, about 80% had cancer, nearly all had some form of insurance, and about 85% were age 65 or older.  The two most commonly-stated reasons for seeking assisted suicide were loss of autonomy and loss of enjoyment of life—about 90% in each case.  Inadequate pain control was listed for about one-third of the cases.  The median time the patient had been seeing his or her prescribing doctor was 18 weeks, and the prescribing doctor was present for 13 of the 133 deaths.

Of course, all of this assumes the reporting is complete and accurate.  I have no information that would lead me to believe otherwise.  I state the facts in the preceding paragraph without commentary or, in some cases, without the irony I feel in reading them.

I can’t conclude from the Oregon report that patients who availed themselves of assisted suicide there were foregoing potentially effective treatment for their disease, much less that an insurance company refused to pay for it.  Of course, there is the one famous case of a person there getting a “suggestive” note about PAS from his insurer, some years ago—I can’t locate it at the moment.

In general, I’d say that the concerns raised through the above-mentioned posts are ones we must keep in mind, but that the slope may not yet have gotten that slippery.

Finally: the National Academies of Science, Engineering, and Medicine will hold a conference in Washington DC on Monday and Tuesday, February 12 and 13.  Looks like a webcast is available.  You can find information about it, and sign up to attend in person or by the web, here.  I’m going to try to at least watch some of it. From the information at that site:

This workshop will include discussions, and background materials, that address:

  • What is known empirically about the access to and practice of physician-assisted death in the U.S. and in other countries?
  • What are potential approaches for physicians, including those practicing in states where it is legal, those who receive a request for access when the practice is legal in nearby states but not in the state of practice, and those who practice in a state where it is legal but are personally opposed to physician-assisted death.
  • What is known about how palliative care and hospice services have incorporated the practice of physician-assisted death in states where it is legal?

The DNR Tattoo

National media outlets have reported the fascinating account of the unconscious 70-year old brought into the Jackson Hospital (Miami) emergency room with a “Do Not Resuscitate” tattoo on his chest.

In correspondence to the New England Journal of Medicine, doctors involved in the case explain the process by which the medical team used to evaluate the case. At first, the team did not plan to honor the tattoo, but an ethics consultation “suggested that it was most reasonable to infer that the tattoo expressed an authentic preference . . . and that the law is sometimes not nimble enough to support patient-centered care and respect for patients’ best interests.” One wonders what facts were used to shed light on the accuracy of the tattoo, especially in view of another case, cited in the NEJM correspondence (“DNR tattoos: a cautionary tale”), when a DNR tattoo did not convey the wishes of the patient.

The accounts of this most recent case end on a positive note: “Subsequently, the social work department obtained a copy of his Florida Department of Health “out-of-hospital” DNR order, which was consistent with the tattoo . . . We were relieved to find his written DNR request…” I was happy to read this too, as tattoos are not necessarily the best way to communicate end of life issues.

Those who work with people thinking about advance directives know that what seems clear one day, could easily be less clear the next. Some patients change their mind on code status frequently, especially as they develop breathing problems and the like. It is, of course, their right to do so. Simply put, it would be hard to rescind (or even modify) a tattoo.

Those of us involved in chaplaincy speak of patients as being “living documents.” I am relatively sure this is not what is meant.

Giving people nearing the end of life the same protection we offer children

Tony Walter writing on the website The Conversation suggests an interesting perspective on how society ought to think about those of us who are at the end of life. He suggests that we need to provide the same protection for them that we offer to children. He is not suggesting that we take away the autonomy and independence of our parents and grandparents, but that if we focus solely on the autonomy of those who are at the end of life we run the risk of abandoning them. In early childhood, all of us live in a state of dependence and we recognize the responsibility that parents must provide for the needs of their children. We also recognize the societal responsibility when parents are unable to or for other reasons do not provide for the needs of their children. He is saying that there are many among us who enter into a state of dependence as they age and develop diminished capacity to provide for their own needs. When this occurs we as a society have a responsibility to see that those needs are provided for, while still recognizing and encouraging whatever autonomy those elderly persons in need still possess.

In my practice, I commonly see situations in which children begin to take on a parenting role toward an aging mother or father with diminished capacity to care for her his own needs. At times, this is awkward and may be resisted by either the parent or the child, but it can be done well with respect for the aging parent and gratitude on the part of the child for how the parent cared for him or her at the beginning of life. It would be good for us to recognize this symmetry of life with dependence at both its beginning and end, and embrace it rather than ignoring or avoiding it.

The focus on autonomy and self-reliance in our society can at times be productive but also can be destructive. Those of us who are Christians should be able to understand that no matter how capable we are we are all dependent. None of us is capable of being what God desires for us to be on our own. We are all dependent upon him to be transformed into the representation of his image that he desires for us to be. If we can recognize that dependence is something that we all share we can respond to the needs of the frail elderly among us in a way that both respects and protects them.

More about Charlie Gard

Dr. Robert Truog, the bioethicist and transplant physician who has pushed the envelope on the definition of death, has weighed in on the Charlie Gard case in a “Perspectives” piece that is generally available (i.e., without a subscription) from the Journal of the American Medical Association (JAMA).   By all means read it.

Dr. Truog approaches the case from the standpoint of limiting medical research—indeed, that’s in the title of his article.  He says the case is about “the best interest of the patient, financial interest, and scientific validity.”  On the first point, he is cautious about the British courts’ assertions that it can assess how much pain and suffering Charlie is experiencing, and whether the courts know this better than the baby’s patients.  This caution seems wise.  As I have reflected further on this case it strikes me that I may be missing a legal distinction between Britain and the US; frankly, I am not well-versed on British law in these cases.  I do tend to think of the Gard case in terms of substituted decision-making in the case of severe or terminal illness.  My thought process runs through the checkpoints.  First, the patient’s wishes are paramount.  In this case, the patient cannot express wishes and may not be able to form them.  In that case, second, a surrogate decision-maker should speak for the patient using “substituted judgment” or “substituted perspective” to express how the patient might have approached the case if able to express wishes.  Here, the parents are available to speak for the patient.  It would be only in the absence of a decision surrogate that “the best interests of the patient,” as judged by the physicians or the courts, would control.  Apparently British law grants rather more primacy to third parties, other than the patient and any surrogate decision-maker.  Under the rubric I’m used to, the parent’s wishes would control.  Here, the British authorities argue, they do not.

The columnist William McGurn took exception to this attitude in The Wall Street Journal earlier this week.  “This is our call, [the doctors and courts] say,” he writes.  And this is the necessary attitude of single-payer healthcare, he claims: “at the heart of single payer is single authority.”  The hospital, McGurn charges, “even wants the last word on love: ‘In one respect, Charlie is immensely fortunate” to have such loving parents, but that respect apparently has nothing to do with this decision, for which their love apparently disqualifies them.  (BTW, perhaps you have seen the report that the court-appointed “guardian” for Charlie chairs an organization that is a sister organization to one that promotes doctor-assisted suicide.)

Dr. Truog’s second point is that distributive justice trumps (my word, no political pun intended, honest) the money Charlie’s parents have raised for his experimental care.  In fact, justice demands we disqualify that fundraising effort, because to allow them to pay is to elevate their ability to pay over others who may be in need of scarce resources.  He says that public funds have stood up the hospital and British health system overall, so the Gard family does not, as it were, “own” it or lay privileged claim to access.  I find this argument of Dr. Truog’s specious.  There is no certainty at all that Charlie would block other needed care—unless, I suppose, it is allowed that Britian’s National Health Service already rations care to the point of extreme scarcity!—and they harm no one by possibly paying for experimental care.

That leaves the third issue—is treatment, admittedly experimental in this case, ethical?  Dr. Truog says no, because the chance of success is so low and “does not meet a threshold of scientific plausibility.”  He argues that the rationale is theoretical only, and complains that the proposed experimental treatment has not been tested in animals or humans before.  But again, this is at least partially specious.  Charlie suffers from an extremely rare condition, animal models may be lacking or entirely unpredictive (medical researchers operate with this general conceit that animal studies DO predict—boy can I tell you how often we are wrong about that!), and when a condition is rare, EVERY individual case provides the opportunity to learn something.  Medical history is replete with work based on the careful observation of clinicians, even apart from the randomized clinical trial, which could never be done in such a rare condition as Charlie’s.

It is of course possible to object that the risk-benefit ratio for giving Charlie the experimental treatment is a judgment call that should be made against treatment.  If the doctor is truly being reckless with the proposed treatment, is profiteering, or if there is no reasonable possibility, at acceptable risk, for direct benefit to Charlie or for useful knowledge to be gained, then the proposed treatment should be deemed unethical.  In the U.S., that would be a call for an IRB and the FDA.  And again, they might say “no,” in which they would be speaking more to the doctor than the patient’s parents.

But in this case I think the British courts should defer to the parents and allow them to pursue that question in the U.S.