The Gift of Finitude

I’ve been thinking a lot lately about finitude. About limits. Incompleteness. Even failure.

Like the friend of a friend who is dying and has just been admitted to hospice, whose young teenaged daughter is facing the prospect of a life without her mother.

Like the colleague who is grieving the loss of both a spouse and a parent within a month of each other.

Like my power wheelchair that keeps breaking down, making everyday activities significantly more challenging.

Like the never-ending “to-do” list that seems to be anything but finite, and never quite seems to get any shorter.

Life is, in a word, full of limits. Boundaries. Unavoidable stopping points.

Or is it?

What if we could transcend our limits, as recent developments in genetic and related technologies (e.g., CRISPR) seem to promise? What if, through genetic manipulations of various sorts, we could significantly reduce our limitations—eliminate specific diseases and disabling conditions, improve cognitive function, “select” for desired physical traits, and so on?

If we could do these things, should we do them?

Of course, as anyone who has followed the field of bioethics for even a short period of time knows, these questions are neither new nor hypothetical. In many ways, the “future” is already here: we “enhance” ourselves, “transcend” limits and boundaries, and otherwise seek to “overcome” finitude in a myriad number of ways, on a daily basis. And much of this is salutary.

Still, it’s always worth pausing to consider: supposing finitude could be eliminated entirely from our lives (which seems extraordinarily doubtful), is it the sort of thing we ought to try to eliminate? Put differently: is there anything good about finitude, such that we ought to embrace it (even if in a qualified way)?

Gilbert Meilaender, a bioethicist and Distinguished Fellow of The Center for Bioethics and Human Dignity, suggests that there is something good about finitude. In a reflection on the “created duality” of our human nature—we are simultaneously both “free” and “finite”—Meilaender observes that this “two-sidedness” to our nature both opens up possibilities and imposes certain limits upon us. We are, he observes,

created from dust of the ground—finite beings who are limited by biological necessities and historical location. We are also free spirits, moved by the life-giving Spirit of God, created ultimately for communion with God—and therefore soaring beyond any limited understanding of our person in terms of presently “given” conditions of life…. Made for communion with God, we transcend nature and history—not in order that we may become self-creators, but in order that, acknowledging our Creator, we may recognize the true limit to human freedom. Understanding our nature in this way, we learn something about how we should evaluate medical “progress.” It cannot be acceptable simply to oppose the forward thrust of scientific medicine. That zealous desire to know, to probe the secrets of nature, to combat disease—all that is an expression of our created freedom from the limits of the “given,” the freedom by which we step forth as God’s representatives in the world. But a moral vision shaped by this Christian understanding of the person will also be prepared to say no to some exercises of human freedom. The never-ending project of human self-creation runs up against the limit that is God. It will always be hard to state in advance the precise boundaries that ought to limit our freedom, but we must be prepared to look for them.[1]

I am inclined to agree with Meilaender. Moreover, as I have shared in an autobiographical essay published recently,[2] my own experiences as a person with a physical disability have taught me valuable life lessons that, arguably, might not have been learned otherwise—lessons such as the value of patience and endurance, accepting my limits (an ongoing struggle, I must admit!), and even the importance of having a sense of humor at the (sometimes ridiculous) circumstances in which one finds oneself. Our limits shape our character, our career, and our life choices as much as do our “freedoms”—often in surprising and unexpected ways, and frequently for the better.

None of these reflections, of course, even begin to scratch the surface of the “what?”, “where?”, “when?”, “how?”, or “why?” questions related to the ethical permissibility (or lack thereof) of pursuing various genetic, reproductive, or other technologies. Nor do they, by themselves, tell us whether (and when) we ought or ought not to avail ourselves of abortion, physician-assisted suicide, euthanasia and the like.

They do, however, remind us of one very simple, yet all-too-often overlooked fact: finitude is, in many ways, a gift. Let us not neglect it.

 

[1] Gilbert Meilander, Bioethics: A Primer for Christians, 3rd ed. (Grand Rapids, MI: Eerdmans, 2013), 3-5.

[2] See “Why am I Disabled? Reflections on Life’s Questions and God’s Answers,” in the Beyond Suffering Bible (Tyndale, 2016), available at beyondsufferingbible.com and http://www.joniandfriends.org/bible/.

A Conflict of Interest is NOT an Ambiguity

Oregon Senate Bill 494 has been described as a “euthanasia bill” that is “intentionally ambiguous,” and as a piece of legislation that would “allow the starving and dehydrating of patients who suffer from dementia or mental illness.”

What has received less press is the composition of the 13-member committee who would be perpetually in charge of advance directive forms in the state, with no oversight by the legislature. Who would those persons be? According to the bill, the 13-member “Advance Directive Rules Adoption Committee” would include

  • The Long Term Care Ombudsman or that individual’s designee
  • 12 members appointed by the Governor
    1. one representative of primary health care providers
    2. one who represents hospitals
    3. one clinical ethicist affiliated with a health care facility
    4. two health care providers with palliative care or hospice expertise
    5. one who represents persons with disabilities
    6. one who represents “consumers of health care services”
    7. one who represents “the long term care community”
    8. one who has expertise in “advising or assisting consumers with end-of-life decisions”
    9. three members from among those proposed by the Oregon State Bar:
      • an expert in elder law
      • an expert in estate planning
      • an expert in health law

Why is the State of Oregon so interested in making sure their appointees are in charge of advance directives?  Is it because the state is so concerned about the health of its citizens?  Hardly, when those citizens in the health care system are described not as patients, but consumers.  Stacking the committee with lawyers who are experts in estate planning and elder and health law seems to assure the state that they will get their pound of flesh.  The State is aware of this:  deceased consumers no longer need their money or their organs.  The conflict of interest inherent in this scheme is not ambiguous.

 

— D. Joy Riley, M.D., M.A., is executive director of The Tennessee Center for Bioethics & Culture.

Advance Care Planning and its Detractors

The default mode of our technologically advanced medicine is to use our technology. Nowhere is this more true than close to the end of life. And our technology is really impressive; with it, we can keep chests going up and down and hearts beating for a long, long time.

The troubling thing is that there are many people who would rather not have lots of machines keeping their bodies going, thank you, maybe you could just give me some oxygen and pain medicine and let me die at home with my family? But they never get a chance to talk about it with their doctors, mostly due to doctors’ lack of time or comfort in addressing such questions. And, unlike every other procedure in medicine, doctors don’t need your permission to do one of the most invasive procedures of all to you: CPR. Of course, CPR is generally performed on someone who is indisposed and unable to give their informed consent to the procedure. And CPR is often the first step on the technological path of ventilators, tubes, dialysis, medications to support the blood pressure, machines that keep the heart pumping, and all of those wonderful interventions that are life-saving when used appropriately and death-prolonging when used indiscriminately. Treatments that treat . . . nothing.

Ideally, doctors take time to discuss patient preferences about such treatments with patients and their families before the occasion to intervene arises; however, the factors noted above make such discussions rare. Those discussions are ideally an exploration of patient values and expectations from health care, and a translation of those values into appropriate medical interventions. They also identify people who are familiar with the patient and their values who can act as surrogate decision-makers should the patient not be able to make or express their own desires in a particular situation.

Because of the difficulties finding time for these important discussions, it was proposed as part of the Affordable Care Act (aka ACA, aka Obamacare) that Medicare reimburse doctors for the time they take to counsel patients and find out their preferences for end-of-life care. In an act of breathtaking rhetorical deception (aka lying), these discussions with patients, meant to elucidate their preferences for care, got labeled as “Death panels.” (I am not making this up.) The proposal was dropped from the ACA.

Then, in 2015, Medicare started reimbursing physicians for having The Conversation. But last month a Representative King introduced a bill in Congress, deceptively titled the “Protecting Life Until Natural Death Act,” which would revoke such payments.

Fortunately, the bill’s fate is “highly uncertain.” It should never see the light of Congressional day. It propagates the idiocy that lay behind the charges of “Death panels.” And rather than promoting “Natural Death,” it will lead to more people dying anything but a natural death; instead, they will be dying a technological death, hooked to lines and machines and drugs — things they would never have wanted or received had they only had a chance to talk it over with their doctor.

Christianity and Physician-Assisted Suicide (2)

October 10, 2016

A few blogs ago, I discussed a Time op-ed that spoke of a Christian perspective to physician assisted suicide. Understanding that Christian is a hopelessly ambiguous term, I wanted to see if there was anything noticeably Christian about the op-ed.

My reflection at the time was that any advocate of PAS – Christian, religious, spiritual, or secular—could have written the piece. The only spiritual elements were prayer and having peace with the decision.

Last week Archbishop Emeritus and Nobel Peace Prize laureate Desmond Tutu wrote an op-ed in the Washington Post stating that as he grows older, he wants to lend his voice to the cause of “death with dignity.” What makes Tutu’s op-ed interesting to me is that he couches his conclusion in the language of Christianity: “In refusing dying people the right to die with dignity, we fail to demonstrate the compassion that lies at the heart of Christian values.”

The question, of course, is whether or not PAS is an adequate expression of Christian compassion to the dying? Tutu places the choice starkly: if you don’t allow PAS, people will suffer horribly. It is almost as if to him palliative care is a non-entity. He overlooks the historic Christian example of providing comfort and support to the dying, be it the believers of the early church or the contemporary hospice movement.

I have long agreed with those who think that love should be at the center of Christian ethics, because of its central place in the teaching of Jesus (see the “Two Commandments” of Matt 12:37-38). Tutu’s invoking of compassion as the Christian basis of PAS makes me think that further clarification of what it means to love is very much needed.

A novel strategy for suicide prevention

In the Netherlands, a doctor will not be prosecuted for assisting a patient to die either through euthanasia or assisted suicide (EAS) if certain conditions are met, among which are the following: The patient’s request for aid-in-dying must be voluntary and well-informed, without coercion from others, and uninfluenced by psychological illness or drugs; their suffering should be unbearable and hopeless, with no prospect for improvement and without reasonable alternatives; and an independent physician should be consulted, who should concur with the aforementioned conditions. Supporters aver that these guidelines have made physician-assisted death safe and have avoided the “slippery slope” that detractors and fear-mongers fulminate about.

A commentary (preview available here) in last week’s JAMA gives cause to question the rosy picture some paint of the Netherlands experience. The commentary refers to a study that appeared in the April 2016 JAMA Psychiatry. The study describes the practice of EAS for psychiatric disorders in the Netherlands, reviewing 66 patient reports filed by physicians from 2011 to 2014. Surprisingly, only 49 of the 66 patients experienced depression. Thirty-four had at least one prior suicide attempt. Six had substance abuse, two a diagnosis of autism. Thirty-four had personality disorders; 13 had never had a psychiatric hospitalization; 37 described social isolation or loneliness. Thirty-seven of the patients had refused some recommended treatment. In eight cases, the involved psychiatrist believed that the criteria for EAS had not been met. Eighteen cases involved physicians who had not cared for the patients before the EAS request; most had met the patients through mobile euthanasia clinics. (As Paul Appelbaum writes in an accompanying editorial [preview available here], “One might wonder whether a clinic intended to make assisted death more available will have a lower threshold for approving requests.”) In 16 patient cases, three independent physician reviewers could not agree among themselves as to whether the patient was making a competent request, or whether there was treatment that offered some prospect of improvement.

The description of some of the patients is compelling. The study reports that a “woman in her 70s without health problems … and her husband had decided some years before that they would not live without each other. She experienced life without her husband, who had died 1 year earlier, as a ‘living hell’ and ‘meaningless.’ A consultant reported that this woman ‘did not feel depressed at all. She ate, drank, and slept well. She followed the news and undertook activities.’ ” About patients who reported social isolation or loneliness: ” ‘The patient indicated that she had had a life without love and therefore had no right to exist’ . . .  and ‘The patient was an utterly lonely man whose life had been a failure.’ ” A Dutch regional euthanasia review committee found one case that did not meet due care criteria: “. . .a woman … in her 80s with chronic depression who sought help from the End-of-Life Clinic. The clinic physician met with her 2 times (the first time was 3 weeks before her death), and the patient was not alone on both occasions, with family members present. The physician was not a psychiatrist, did not consult psychiatrists, was unaware of the Dutch Psychiatric Association Guidelines, and yet ‘had not a single doubt’ about the patient’s prognosis.”

These stories are tragedies. I do not deny that the patients in this study were truly suffering. But is EAS really an appropriate way to treat the suffering, by killing the sufferer? If someone fails in an “illegal” suicide attempt, can they just go to the doctor and have it done legally? Is EAS to be the new solution for loneliness, social isolation, and grief? Is it not a slippery slope to go from “Doctors must not kill,” to “Doctors can kill in the case of terminal illness,” to “Doctors can kill people who don’t have a terminal illness but just want to be dead”?

Medical errors and more medical errors

Last week the BMJ reported that annually, there are 251,000 hospital deaths due to preventable medical errors in the US. There’s some debate about the calculations that they used to arrive at that number, and about what exactly constitutes a medical error. However, rather than quibble over the fine points, let’s acknowledge that medical errors are an ethical problem that must be addressed. In this post I would like to widen the conversation beyond the hospital walls. Below is a sample of some deaths due to preventable medical errors that weren’t included in the BMJ calculations (most of these ones happen outside of hospitals); nevertheless, they too affect thousands of people annually. I will also attempt to provide a taxonomy of the relevant errors.

Deaths due to the inability of the patient to obtain medical care because they couldn’t afford the care or the insurance — unknown number. The medical error here is a systemic one, the rationing of health care on the basis of who can pay for it.

Deaths of patients due to their being the subjects of human research — unknown number. This is peculiarly prevalent among embryonic patients (as Jon Holmlund wrote about last week). The medical errors include the failure to extend to embryonic research subjects the protections enumerated in the Declaration of Helsinki. There is also a category error: classifying embryonic patients as something other than human beings.

Deaths of embryonic or fetal patients through elective induced abortion — 977,000 (2014 data). The same category error as previous comes into play here: the failure to recognize the humanity of the unborn human.

Deaths of patients from drugs prescribed by their physician for the purpose of suicide — the numbers data is incomplete. The number is relatively low but projected to grow as more jurisdictions legalize physician-assisted suicide. The errors here include a professionalism lapse (forgetting that the professional status of medicine was established, among other things, on the dictum that doctors do not give deadly drugs, even if asked to do so). There is also the error of hubris: the belief that doctors can decide that someone should be allowed to kill themselves.

Preventable medical errors, all.

“The Enormity of the Moral Mission of Medicine”

As I write, Paul Kalanithi’s book When Breath Becomes Air sits atop the New York Times Bestseller List. I highly recommend it. It is beautiful.

This book was written by a dying man. All books are, I suppose, but this author knew with more certainty than most that his time was short. Paul Kalanithi was finishing a grueling neurosurgery residency and on the cusp of a brilliant career when he discovered he had advanced lung cancer. In this book, written during the last months of his short life, he tells his story, a story of his search for meaning. He initially looked for meaning in the study of words, as he collected degrees in English and history and philosophy. But he discovered that meaning is not just read about, but lived, lived in relationships with others. As he thought about relationships, words, minds, and the brains through which words and minds are expressed, he writes that he “couldn’t let go of the question: Where did biology, morality, literature, and philosophy intersect?” The answer wasn’t to be found, for him, in the classroom: “. . . I found myself increasingly often arguing that direct experience of life-and-death questions was essential to generating substantial moral opinions about them. Words began to feel as weightless as the breath that carried them. . . It was only in practicing medicine that I could pursue a serious biological philosophy. Moral speculation was puny compared to moral action.”

And this illustrates one of the great strengths of the book: the profound understanding that medicine is at its heart a moral practice. Kalanithi writes of “The enormity of the moral mission of medicine . . .” He pursued one of the most technical of specialties, neurosurgery, yet he did not let the technical aspects obscure the moral core of medicine, the patient-physician relationship. As he writes, “When there’s no place for the scalpel, words are the surgeon’s only tool.”

As he explores the moral practice of medicine, Kalanithi writes insightfully of informed consent, not as “a juridical exercise in naming all the risks as quickly as possible . . . but an opportunity to forge a covenant with a suffering compatriot.” As a neurosurgeon he writes of the experience of life and death from the bedside. He learns that “the physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”   Then he receives his own terminal diagnosis, and writes eloquently of his experience of life and impending death from the patient’s bed. The ending of the book, along with his wife’s epilogue, is deeply, deeply moving, but not maudlin.

(Quotes from pp. 32, 43, 44, 87, 88, and 166)

 

The Lost Narrative

In their article “Autonomy vs. Selflessness at the End of Life” published in the Summer 2015 edition of Ethics & Medicine, Hannah Martin and Daryl Sas provide a useful foray into the battle over the meaning of human dignity.

The authors describe an alternative to the “flat” version of human dignity espoused by proponents of physician-assisted suicide (PAS)—a version based solely on self-determination. In other words, a human dignity reliant only on autonomy (or, control) in decision-making lacks the depth and breadth inherent in the actual human experience. Our own individual creation ought to be sufficient to convince anyone of our lack of control over the nature of life, and brief reflection on the sheer improbability that there is any life at all should be enough to cause one to ask if there is some other force behind it.

I would add that the concept is not just flat but paper-thin, and bases its appeal on what could be called “the lost narrative.” Martin and Sas refer to the “poignant narratives of dying” that drive state laws legalizing physician-assisted suicide. These narratives succeed when we fail to articulate an alternate, and in fact, accurate view of the human experience of dying.

The authors help greatly to provide the alternative, a view in which dignity is based on virtues such as love (and its selflessness), courage, humility, and blessings such as God’s grace. Without these, autonomy will push us towards the extremes of “absolutizing life’s sanctity by claiming autonomy in life and…absolutizing life’s dignity by grasping at autonomy in death.” In fact, without God, mankind could never find balance, but instead be driven (as we seem to be) toward the extremes.

And without proper balance, where would someone establish the threshold of sufficient suffering to warrant early death? And if selflessness is removed as motive, what horrors might the medical profession produce? The “suffering” of family members and medical staff would enter into the equation (unchecked by selfless love) and push the patient toward an earlier and earlier death.

For the proponents of PAS, suffering is only bad. Human dignity becomes simply avoidance of what we can’t control. Such a view robs mankind of any hope that anyone can be anything more than the person who flips his own switch. But for those of us who have been in the presence of dying, we have had the opportunity to see for ourselves what is and is not dignified. We see it in the selfless love of caregivers, of family, and of the dying, all cherishing those final moments, wishing there were more to spend together, and never ready to end it all too soon.

A Modest Proposal to Solve the Physician-Assisted Suicide Debate

Yesterday’s Chicago Tribune carries an editorial by Steve Chapman entitled “The Case for the ‘right to die.'” Aside from missing the central point of the whole question, Chapman does a creditable job of marshalling arguments and bioethicists to support his support for physician-assisted suicide. However, he does neglect the central point, which, of course, is that doctors do not and should not kill — including not giving patients a deadly drug with the intent that the patient will use it to kill themselves. This has been a central tenet of medical ethics ever since there were medical ethics, and for good reason. Doctors are no more able to wisely and ethically deal out death than anyone else. I write as a physician, and I can assure you that a strong background in biochemistry, pathology, pharmacology, genetics, bioethics, etc., does not give me the wisdom and ethical discernment to make the decision to intentionally provide someone with the means to intentionally kill themselves.

Thus, the dilemma: Chapman and many others think that when it comes to killing themselves, patients should be able to get whatever they want, and that doctors should help them; and most of us doctors and our various societies say that we won’t help patients get everything they want if it means they want to kill themselves.

Allow me to propose a simple, yet elegant, solution: Eliminate the middle man (or woman).

Let me explain: Chapman et al. want to help patients kill themselves, but doctors have a problematic ethical code prohibiting them from doing such. Doctors have no more expertise than anyone else at dealing out death. So, eliminate the doctors from the equation: instead of Physician-Assisted Suicide, let’s establish Newspaper Editor-Assisted Suicide. And for those bioethicists who have jumped on the bandwagon, let’s have Bioethicist-Assisted Suicide. And to make it all easier for patients who don’t have easy access to an editor or bioethicist, we can add Plumber-Assisted Suicide, Bank Teller-Assisted Suicide, or Cable TV Guy-Assisted Suicide.

The advantages of this approach should be readily apparent. Patients get what they want, doctors don’t get what they don’t want, and Chapman et al. get to carry out their good intentions unencumbered by centuries of ethical tradition, thought, and wisdom.

Oh, Those Darned Terms!

In a recent post Jon Holmlund cited Thomas B. Edsall’s op-ed in the New York Times, “The Republican Conception of Conception.” Edsall was referring to the concept that life begins at conception. It is his hope that Republicans either stake a consistent position regarding the morality of post-conception “contraception” and incur the disfavor of the electorate, or abandon their “moral purity” in favor of “pragmatism” and agree that post-conceptional interventions are acceptable.

Edsall’s states it thus:

By this logic, a presidential candidate seeking to live up to the standards set by Sedlak and others in the anti-abortion community must then agree that the IUD and morning after pill cause abortions.

The problem is that Edsall challenges GOP candidates to take an informed and consistent position, while depending on the electorate not to. His strategy relies on manipulative use of terms to produce the opposite of clarity in moral reasoning. First, he speaks of medical interventions described as “contraceptives” that act in ways beyond merely preventing conception. But he does not give them the label “abortifacient” (the proper term for an IUD should be “contraceptive-abortifacient”); the term is simply omitted. That is the best way, of course, to ensure that users of devices such as the IUD are unaware that it may act after creation of an embryonic being.

Such a position is facilitated by ACOG’s definition of pregnancy as beginning at implantation, which Edsall also hangs his hat on. This is a willful dodge. “Pregnancy” refers to the state of the woman. To claim that pregnancy doesn’t begin until implantation fails to refute the notion that an embryonic human being is in existence before then. So the woman isn’t “pregnant”….the human being is still alive, moving toward implantation. And, if the woman isn’t “pregnant” during the time after the embryo is fertilized and before it is implanted, what is her state? Is it not different than before she conceived? Does that not deserve a name? The absence of a name for such a condition is no accident, because the unnamed state is far more difficult to assign a moral status to.

This same “reasoning” behind the proposed bill in the California State Legislature  also recently mentioned in this blog by Jon Holmlund:

“The bill would provide that nothing in its provisions is to be construed to authorize ending a patient’s life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among other things, suicide or homicide.”

So, according to this draft bill, one can take one’s own life and not commit suicide. The attempt to separate the actions that this bill would legalize from the term “suicide” is to attempt to prevent citizens from properly interpreting those actions using the moral values they have already acquired.

Are moral discussions about conception, contraception, abortion, and assisted suicide too painful for our electorate, having what Edsall describes as “its complex views and…pragmatism”? For many, yes, as proven by our unwillingness to clarify the terms needed to elucidate the moral issues regarding medical interventions blocking implantation. However, such discussions are not unwanted by all, but simply unknown to them. Remaining uninformed by the medical profession of the mechanisms of action of “contraceptives,” they are never given a chance to make an informed moral decision. Edsall (to achieve his desired virtue of consistency) would more properly make his challenge to all of us, to demand that each voter take a stance on the morality of embryocidal interventions. It is only then that they could properly interpret the candidates’ responses that Edsall so fervently desires.