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Affirming Life in Death?

An Ethical Reflection on California’s Aid-in-Dying Law

Robert Traer, June 2016

In 1990, the US Supreme Court held in Cruzan v. Director, Missouri Department of Health that a person’s right to liberty, which is protected by the Due Process Clause of the Fourteen Amendment to the US Constitution, includes the right to end medical treatment. The Court argued that the right to give informed consent for medical treatment clearly implies the right to refuse consent. Under the Cruzan ruling, with “clear and convincing evidence” of the patient’s intention, a dying patient who is competent―or the family or other surrogate acting on behalf of a patient who is no longer competent―has the right to end all life-support interventions including the removal of feeding tubes and IVs providing hydration.[1]

This legal decision is reflected in Opinion E-2.20 of the American Medical Association (AMA) which addresses “Withholding or Withdrawing Life-Sustaining Medical Treatment” by analyzing the physician’s conflict of duties. “The social commitment of the physician is to sustain life and relieve suffering.” In situations, however, where “the performance of one duty conflicts with the other, the preferences of the patient should prevail.”[2] This statement indirectly acknowledges the duty of a physician to respect the legal right of a patient to have life-sustaining treatment withheld or withdrawn.

Advocacy to increase a dying patient’s end-of-life options was first successful in a 1994 Oregon referendum when 51% of those voting approved the state’s Death with Dignity Act. Three years later a 60% majority voted against an Oregon referendum to repeal the law.[3] That same year the US Supreme Court in Washington v. Glucksberg clarified that the Cruzannot decision did create “a right to die.” The Cruzan decision only recognizes that “the Constitution granted competent persons a ‘constitutionally protected right to refuse lifesaving hydration and nutrition.’” In the 1997 Glucksberg decision the Court unanimously held that dying patients do not under the US Constitution have a right to physician-assisted suicide:

“Given the common law rule that forced medication was a battery, and the long legal tradition protecting the decision to refuse unwanted medical treatment, our assumption [in Cruzan] was entirely consistent with this Nation’s history and constitutional traditions. The decision to commit suicide with the assistance of another may be just as personal and profound as the decision to refuse unwanted medical treatment, but it has never enjoyed similar legal protection.”[4]

The AMA position is equally clear: “Physician assisted suicide is fundamentally inconsistent with the physician’s professional role.” The AMA has also urged physicians to make every effort “to ensure that dying patients are provided optimal treatment for their pain and other discomfort,” as the “use of more aggressive comfort care measures, including greater reliance on hospice care, can alleviate the physical and emotional suffering that dying patients experience.”[5]

In 2001, US Attorney General John Ashcroft declared that “physician-assisted suicide violated the Controlled Substances Act,” and he “threatened to revoke the medical licenses of physicians who took part in the practice.”[6] Five years later, however, the US Supreme Court held in Gonzales v. Oregon that the federal Controlled Substances Act did not authorize the Attorney General “to prohibit doctors from prescribing regulated drugs for use in physician-assisted suicide under state law permitting the procedure.”[7] The Court reaffirmed that health care, under our federal system of law, is primarily a state responsibility.

In a 2008 referendum, Washington by a 58% majority approved its Death with Dignity Act. In 2009, the Montana Supreme Court prohibited criminal sanctions for physicians who prescribe a lethal dose of drugs to a dying patient requesting assistance.[8] In 2013, the Vermont legislature passed its Patient Choice and Control at End of Life Act.[9] In 2015, California approved an End of Life Option Act that came into effect on June 9, 2016, even as thirty-eight states by statute and three states by common law make assisted suicide a felony.

The new California law permits an adult resident “with a terminal disease and the mental capacity to make health care decisions to request and be prescribed an aid-in-dying drug” by making to the “attending physician” treating the terminal disease: (1) two oral requests a minimum of 15 days apart, and (2) a written request witnessed by two independent adults.[10] An independent physician must confirm the patient has a terminal medical condition and will likely die in 6 months or less.

“The law states that death resulting from the self-administration of an aid-in-dying drug is not suicide,” and that this act “does not affect a life, health, or annuity policy other than that of a natural death from the underlying disease.[11] The California law grants immunity from criminal prosecution to any physician who follows the Act’s procedures in prescribing a lethal dose of medication for a “qualified” terminal patient. As with other states that permit aid in dying, the End of Life Option Act affirms that participation by any health care provider in the activities authorized by the Act is completely voluntary.

A physician who agrees to aid a patient in dying must be the “attending physician” with “primary responsibility for the health care of a requesting patient and treatment of the patient’s terminal disease.” The attending physician must: “confirm that the patient is making an informed decision,” confirm “that the patient’s request does not arise from coercion or undue influence by another person,” secure the participation of a consulting physician, write the prescription for the lethal dose of drugs, and confirm “that all requirements are met and all appropriate steps are carried out in accordance with the law.” In addition, the attending physician must give the patient the ‘Final Attestation for an Aid-in-Dying Drug to End My Life in a Humane and Dignified Manner’ form with the instruction that the form be filled out and executed by the patient within 48 hours prior to self-administering the aid-in-dying drug.” After the patient has ingested the drug, the attending physician must enter on the death certificate “the cause(s) of death that he/she feels is most accurate,” but the Act prohibits entering “suicide” or “assisted suicide” as a cause of death.[12]

 Under the Act a health care provider “may prohibit the exercise of activities relating to the law on its premises or by its staff, employees, or contractors,” but cannot “prohibit a medical staff member from making a referral or providing information about the law if he/she chooses to do so.”[13] Pomona Valley Hospital Medical Center (PVHMC) will provide to those who inquire a summary of the End of Life Option Act and a copy of the hospital’s policy that prohibits on its premises three life-ending activities allowed by the Act: obtaining a lethal prescription from the hospital’s pharmacy, the attending physician delivering or dispensing the aid-in-dying drug to a “qualified” dying patient, and the patient’s ingesting of the drug.[14]

I supported this policy, as a member of the PVHMC Ethics Committee, because I see the new law as allowing a willing “attending physician” to help a dying and competent patient to choose the time, place, and manner of death. In states where an aid-in-dying option has been legal, most patients have chosen to die at home, and many hospitals have limited involvement in a manner similar to the PVHMC policy.

Autonomy as a Patient’s Choice

US law and AMA policy not only support the right of a patient to have treatment withdrawn, but also the right of a dying patient to consent to medication that may hasten death. The AMA justifies this “comfort care” because the drugs prescribed are only “aimed at relieving symptoms, enhancing the quality of remaining life, and easing the dying process.”[15] The physician who prescribes medication that may hasten death is presumed to have this ethically justifiable intent. After the attending physician properly informs a patient, and concludes the patient is competent to give consent, the patient’s consent (or refusal to consent) is simply recorded in his medical record. Neither the law nor AMA policy requires any attempt to verify the intent of the dying patient. The patient’s reasons for refusing treatment, or for having life-support withdrawn, or for consenting to medication that may hasten death, do not have to be ethically justified.

The California End of Life Option Act explicitly requires an additional step beyond confirming “informed consent” by a patient requesting aid in dying. “If the attending physician determines that the patient has indications of a mental disorder, the attending physician must refer the patient for an assessment by a mental health specialist.” No aid-in-dying drugs may be given to the patient “until the mental health specialist determines that the individual has the capacity to make medical decisions and is not suffering from impaired judgment due to a mental disorder.”[16] Confirming a patient’s mental capacity, however, does not require any attempt to verify the reasons why the patient is requesting an aid-in-dying prescription.

Linda Ganzini, a professor of psychiatry at Oregon Health and Science University, explores this question of the patient’s intent in a 2009 study of 56 Oregon patients who requested a physician’s assistance in dying. “Everybody thought this was going to be about pain,” she reported. At the time the patients were interviewed, however, very few said pain was their primary concern. Instead, they wanted to remain in control of their dying and to end their lives at home.[17]

Reports filed through 2014 by Oregon physicians, who have aided patients in dying, confirm that the main concerns of these patients are: “loss of autonomy (93%), decreasing ability to participate in activities making life enjoyable (88.7%), and loss of dignity (73.2%).” Patients have also said they fear “losing control of bodily functions (50.3%)” and “being a burden on caregivers (40%).”[18] These results verify that those requesting aid in dying in Oregon are more concerned with personal autonomy than with avoiding pain.

Autonomy as Intent

The Oregon Death with Dignity law refers to physician-assisted suicide, as do AMA policies and the Cruzan and Glucksberg court decisions. The California law, however, refers to aid in dying. Unlike the word “suicide,” which simply means taking one’s own life intentionally and voluntarily, the phrase “aid in dying” refers only to assisting in the death of someone who is already dying. Aid-in-dying laws allow a “qualified” patient to hasten his dying intentionally and voluntarily. In this sense, aid in dying is more like comfort care than like suicide, because it is a way of “enhancing the quality of remaining life, and easing the dying process,” which is how the AMA ethically justifies providing comfort care for dying patients.[19]

Neither the law nor the AMA is concerned about the actual state of mind of a dying patient who asks that life-support be withdrawn or aid-in-dying medication be made an option. Yet, from an ethical as well as a religious or spiritual perspective, this is a significant concern. We see this clearly in Catholic teaching on health care, which draws on the ancient Western “natural law” tradition of moral philosophy that affirms all ethical issues should be resolved to further the purposes for which the natural world was created.

What does Catholic teaching say about end-of-life choices? The Ethical and Religious Directives for Catholic Health Care Services allow a person who is dying to “forgo extraordinary or disproportionate means of preserving life. Disproportionate means are those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community.”[20] (Directive 57) Nonetheless, every person also “has a moral obligation to use ordinary or proportionate means of preserving his or her life.”[21] (Directive 56) The Directives explain, “Proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community.”[22] (Directive 56) 

A model Catholic advance health directive allows a patient to choose comfort care: “I can use medications and treatments that bring comfort and relieve pain, even if they indirectly and unintentionally shorten my life.”[23] This ethical reasoning is all about the life-affirming intent that Catholic teaching requires of dying patients who are in certain circumstances allowed by the Church to opt for withdrawing life-support or for comfort care that will likely hasten death.

“In principle,” the Church clarifies, “there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care.”[24] (Directive 58) Under certain circumstances, however, nutrition and hydration may be withdrawn: “Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be ‘excessively burdensome for the patient or [would] cause significant physical discomfort, for example resulting from complications in the use of the means employed.’”[25] (Directive 58)

The Directives do not explicitly refer to a patient’s “right” (to give informed consent or end treatment). Instead, Catholic teaching affirms: “The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-sustaining procedures should always be respected and normally complied with, unless it is contrary to Catholic moral teaching.”[26] (Directive 59) A patient’s autonomy is not denied, but constrained by the Church’s teaching on what choices will help realize our divine purpose.

Autonomy as Relationships

Catholic teaching limits autonomy for the sake of the common good as understood by the Church. Feminist philosophers expose the inherent limits of autonomy from a secular perspective: “the traditional model of autonomy is inadequate” because it ignores “the contextual details of personal experience” that shape how “autonomy in real life is exercised to a greater or lesser degree.” In making health care decisions this means a physician does not adequately provide respect for a patient’s autonomy simply by explaining the possible risks and probable benefits of the options for medical treatment. A physician must also consider “background conditions that patients bring to their medical experience, the institutional power relationships and social contexts that influence their options, and the medical research priorities that shape them.”[27]

Patients are persons who have their being “within the context of social relationships” influenced by cultural and religious attitudes concerning their “race, class, gender, and ethnicity.” Persons are who they are within families, among friends, in working relationships, and in diverse social groups. Therefore, autonomy is inherently and inevitably relational. “Relationships, far from undermining autonomy, provide the conditions of possibility for the exercise of self-determination and self-actualization.”[28] In health care, these relationships involve caregivers as well as family members, as the following case illustrates.

A pregnant woman suffering distress at 24 weeks, although not in labor, comes to the hospital and demands care—yet prohibits a life-saving intervention for her baby before 30 weeks of gestation. She and her husband live in India where, the husband says, a baby born before 30 weeks is not resuscitated. The attending physician explains to them that the hospital’s policy is to resuscitate at 25 weeks gestation, unless the baby’s health is so poor that medical intervention is futile. Three days later, when the woman has a fever that indicates sepsis, labor is induced and a live baby is born. Normally, a team from the hospital’s neonatal intensive care unit (NICU) would be on hand to care for a premature infant. In this case, as the parents have refused life-sustaining care and any responsibility for the child, the NICU is not contacted. Instead, a nurse caring for the mother takes the baby into another room and holds him for three hours until he stops breathing.

What might we learn about “autonomy” from this case? To respect the autonomy of the couple, two caregivers had to make autonomous moral decisions rather than follow hospital policy. The attending physician chose not to contact the NICU team. A nurse chose to comfort the baby until he stopped breathing. Because of their relationship with the Indian couple and other members of the health care team, as well as their personal convictions, each did what she believed was ethically right in these circumstances.

Affirming Life in Death

After a second stroke at age 90, my father rejected a feeding tube and requested that a life-supporting IV be withdrawn. He died peacefully four days later. Several years before, while undergoing surgery, he had a near-death experience during cardiac arrest. His vivid memory of floating above his body, and moving toward a bright light that felt remarkably loving, as well as seeing my deceased mother in this light, left him without any fear of death. He died in good spirits, grateful for life, and hopeful for what might follow.

With a feeding tube, my father would likely have lived longer, even if somewhat impaired on the right side of his body by his stroke. Instead, he chose to hasten his death by denying his body food and water. As he wasn’t in great pain after his stroke, I think Catholic teaching would consider his death a suicide.

Were I to ask for a life-ending prescription under the California End of Life Option Act, I would consider my action as hastening my death rather than as committing suicide. I would distinguish this choice from the way I considered suicide during a time of depression as a young adult—before I was blessed with the wondrous love of my wife, Nancy, and then the joy of being a father. When I was depressed, suicide would have been an act of autonomy without any consideration of how my death would affect those who loved me—especially my parents and my younger sister. At that point in my life, choosing death by suicide would have been the opposite of affirming life.

Now, however, Nancy and I both oppose life-support when medical treatment is futile. When dying, we hope to end our lives with full awareness rather than in a drug-induced stupor—and without wasting money on expensive health care resources that might be better spent to help others recover their health.

I hope to die affirming life, knowing I was able to leave my surviving wife or children what savings I might have. I also hope to die without fear, having been persuaded by my father’s experience and my own life that our consciousness is embraced by an eternal and purposeful consciousness. In the faith language of my Christian tradition, I hope to die trusting in God’s will and grace.

Catholic teaching affirms that a dying person: “may forgo extraordinary or disproportionate means of preserving life. Disproportionate means are those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community.”[29] (Directive 57) If the means of preserving life for a dying, competent adult may be judged as ethically disproportionate—by a dying patient—might this person also make a life-affirming decision to ingest a prescribed drug that will quickly result in death? Catholic teaching says no, but I am suggesting that a life-affirming choice to hasten death may meet the Catholic standard of fulfilling our human purpose. Hastening death with hope may be an act of faithful witness.

As I contemplate the possibility of qualifying for and choosing aid in dying, my greatest ethical reservation is the burden my choice would require my attending physician to bear. Helping me die may alienate her from many of her colleagues and may make it harder for her to pursue her medical career in any of the 41 states where this action is a felony. Also, she would have to decide what to enter on the death certificate and will be unable to state the facts as clearly as I would want. Exercising my expanded autonomy under the new California law is an ethical dilemma for me, and might also become an ethical dilemma for the physician who would voluntarily agree to assist me.

Therefore, if in dying I have any choice about my death, I hope to have the courage to end all nutrition and hydration, as my father did. I hope to exercise my limited autonomy, at the end of this physical life, as a way of affirming with Dag Hammarskjöld: “For all that has been, Thanks. For all that is to come, Yes!”

NOTES

1 “The Right to Die,” Exploring Constitutional Conflicts, http://law2.umkc.edu/faculty/projects/ftrials/conlaw/righttodie.htm. Accessed March 31, 2016. The Court also ruled that a state might require verification of a patient’s intent before life-sustaining treatment is withheld or withdrawn.

2 “Opinion 2.20 - Withholding or Withdrawing Life-Sustaining Medical Treatment,” AMA, 1984, http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion220.page. Accessed March 17, 2016.

3 “The Oregon Death with Dignity Act,” https://public.health.oregon.gov/ProviderPartner Resources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx. 

4 Washington v. Glucksberg (1997), Legal Information Institute, https://www.law.cornell.edu/supremecourt/text/521/702.

5 “H-140.952 Physician Assisted Suicide,” American Medical Association, September 28, 2007, https://www.ama-assn.org/ssl3/ecomm/PolicyFinderForm.pl?site=www.ama-assn.org&uri=/resources/html/PolicyFinder/policyfiles/HnE/H-140.952.HTM. Accessed March 17, 2016.

6 Gonzales v. Oregon, Oyez: IIT Chicago-Kent College of Law, https://www.oyez.org/cases/2005/04-623, Accessed March 31, 2016.

7 Gonzales v. OregonU.S. (04-623) 546 243 (2006) 368 F.3d 1118, affirmed, Legal Information Institute, http://www.law.cornell.edu/supct/html/04-623.ZS.html.

8 “Euthanasia,” ProCon.org, http://euthanasia.procon.org/view.resource.php?resourceID=00 0132. Accessed March 17, 2016. The Montana Supreme Court held in Baxter v. Montana there is "no indication in Montana law that physician aid in dying provided to terminally ill, mentally competent adult patients is against public policy." Alex Schadenberg, “Montana Committee Defeats Bill to Legalize Assisted Suicide,” LifeNews.com, February 14, 2-13, http://www.lifenews.com/2013/02/14/ montana-committee-defeats-bill-to-legalize-assisted-suicide/.

9 Erik Eckholm, “‘Aid in Dying’ Movement Takes Hold in Some States,” The New York Times, February 7, 2014, http://www.nytimes.com/2014/02/08/us/easing-terminal-patients-path-to-death-legally.html.

10 One witness may be related to the patient, and the other witness may be employed where the patient is receiving medical treatment, but “both witnesses may not fall within the same category.”

11 “End of Life Option Act,” California Hospital Association, 2015. This document is incorporated into CHA’s 2016 Consent Manual.

12 “Document #3459: The California End of Life Option Act” (CMA Legal Counsel, January 2016), CMA ON-CALL: Online Health Law Library (from the California Physician’s Legal Handbook), Sections 9-18. The “attending physician” has other duties as well.

13 David M. Adams, “SB-128/AB15 End of Life Option Act: Ethical Aspects,” Pomona Valley Hospital, February 16, 2016.

14 “Document #3459: The California End of Life Option Act” (CMA Legal Counsel, January 2016), Section 33.

15 “Comfort Care,” http://medical-dictionary.thefreedictionary.com/Comfort+Care. AMA Opinion E-2.037 clarifies that when medical intervention becomes futile, “physicians have an obligation to shift the intent of care toward comfort and closure.” Accessed March 17, 2016.

16 “The California End of Life Option Act,” Document #3459 from the California Physician’s Legal Handbook, California Medical Association Legal Counsel, January 2016, Section 12, page 5.

17 Katie Hafner, “In Ill Doctor, a Surprise Reflection of Who Picks Assisted Suicide,” The New York Times, August 11, 2012, http://www.nytimes.com/2012/08/12/health/policy/in-ill-doctor-a-surprise-reflection-of-who-picks-assisted-suicide.html.

18 Barbara Coombs Lee, “Oregon’s Experience with Aid in Dying: Findings from the Death with Dignity Laboratory,” Annals of the New York Academy of Sciences, 2014:1-7, 3.

19 “Comfort Care,” http://medical-dictionary.thefreedictionary.com/Comfort+Care. Accessed March 17, 2016.

20 Ethical and Religious Directives for Catholic Health Care Services, http://www.usccb.org/issues-and-action/human-life-and-dignity/health-care/upload/Ethical-Religious-Directives-Catholic-Health-Care-Services-fifth-edition-2009.pdf. Italics added.

21 Ibid. 31.

22 Ibid. Italics added.

23 “A Catholic Guide to End-of-Life’s Critical Decisions: Advance Directives,” Daughters of Charity Health System, http://www.rcda.org/Offices/pastoral_care_ministry/pdf/Advance_Directive_Guide.English_only.pdf.

24 Ethical and Religious Directives for Catholic Health Care Services.

25 Ibid.

26 Ibid. Italics added.

27 “Feminist Bioethics,” Stanford Encyclopedia of Philosophy, first published July 19, 2004; substantive revision December 16, 2015, http://plato.stanford.edu/entries/feminist-bioethics/. See Susan Dodds, “Choice and Control in Feminist Bioethics,” in Catriona Mackenzie and Natalie Stoljar (eds.), Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, (Oxford University Press, 2000), 213–235.

28 Ibid. See Anne Donchin, “Autonomy and Interdependence: Quandaries in Genetic Decision Making”, in Mackenzie and Stoljar, 236–258, and Jackie Leach Scully, Disability Bioethics: Moral Bodies, Moral Difference (Rowman & Littlefield, 2008).

29 Ethical and Religious Directives for Catholic Health Care Services. Italics added.

bob@rtraer.com © Robert Traer 2016