EthicsWalk addresses
spiritual care as an ethical enterprise.
It explores why relationships between
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Patient Autonomy v. Family Comfort: The Provider’s Dilemma
Ben, age 56, married father of four adult children, remains on life-support three weeks following a bicycle accident producing massive head injuries. Ben had executed the following Advance Directives: a Living Will, a Health Care Treatment Directive and a Durable Power of Attorney designating his brother Health Care Proxy.[1] A week ago the medical team told the family brain damage was irreversible. Ben would never regain consciousness.
Ben’s family is split over withdrawing life-support. His brother and two of the children argue for immediate withdrawal; his wife and two other children have hired an attorney and are visited daily by their local church minister and hospital chaplain. The clergy both say, “beneficence dictates giving them more time to accept this. There is no rush to withdraw.” The attorney is questioning whether the younger brother is a valid proxy when the wife and adult children are “closer kin.” She threatens to sue if supports are withdrawn before she determines the validity.[2]
The medical team consulted the hospital ethics committee who raised the following points:
• Who is the patient?
• Are there Advance Directives that articulate the patient’s wishes?
• If so, are those wishes being honored?
These are matters of respecting patient autonomy. Beneficence and nonmaleficence accrue to the patient, not the patient’s family, although the latter must be treated with kindness and respect. The technological (and skilled personnel) resources keeping Ben alive are locally limited and extraordinarily costly. There are justice issues involved in prolonged use when the medical team deems further recovery impossible.
Situation analysis: Ben is the patient. Because he cannot communicate and his family is vocal and emotionally charged, their presence is subsuming Ben’s. Ben’s Living Will specifies he does not want “extraordinary measures” to keep him alive but is not dispositive because Ben’s state, like most, limits Living Wills to “terminally ill” individuals.[3]
Ben’s Health Care Treatment Directive follows a popular form available on-line.[4] Ben noted what procedures he never wanted (most of which he is receiving) “when there is no hope of significant recovery, and I have a condition, disease, or injury… without reasonable expectation that I will regain an acceptable quality of life; or substantial brain damage …which cannot be significantly reversed.”
On that form, Ben named his brother as his “agent.” Himself a lawyer, Ben took the added step of executing a separate Power of Attorney for Health Care appointing his brother surrogate decision maker and referencing the previous documents. It instructed his brother to follow those documents and “take any legal action necessary to do what I have directed.”
Ethically and legally, Ben’s clearly stated wishes must be honored. As loving husband and father, he would want his family to have the comfort of professionals sensitive to their grief. But his autonomous choices preclude further extending his life to accommodate family closure.
Footnotes:
[1] All designations are forms of Advance Directives. Each has a separate and differently limited purpose and all are subject to the laws of the particular states in which they are drafted and/or applied. Spiritual care providers cannot responsibly confuse the terms and use them interchangeably. It is every provider’s responsibility to read and understand what each term conveys in his or her state and how it is applied in his or her health care institution.
[2] When a proxy or guardian is clearly named by a competent individual, degree of kinship has no bearing on appointment. Probate codes rank relatives and relationships for purposes of appointing surrogates or guardians in cases where there is no one named. This is a spurious argument to “buy” more time for the family.
[3] While the Living Will cannot provide instruction in this situation, its contents provide clear information about the patient’s wishes in medically futile situations.
[4] Sample Form: Health Care Treatment Directive provided by the Kansas City Metropolitan Bar Association and its foundation, the Metropolitan Medial Society of Greater Kansas City, Midwest Bioethics Center and the Missouri Lawyer Trust Account Foundation.
Anne Underwood has an undergraduate
degree in religious studies, a
master’s degree in rural sociology
and a mid-life law degree obtained
after working over a decade as
a college administrator. She has
mediated for the Maine family courts
since 1983. Currently she serves
as an advisor to the ethics commissions
of ACPE, APC, the CCAR (Central
Conference of American Rabbis),
and NAJC, and consults with a variety
of Protestant faith communities
on issues of power, fair process,
and congregational conflict management.
Her articles on mediation and restorative
justice have appeared in the ACPE
News, The APC News and on the ACPE
web site. Articles on clergy accountability
and judicatory processes are published
by the Alban Institute and The
Journal on Religion and Abuse.
A
chapter, “Clergy Sexual Misconduct:
A Justice Issue,” appears in Body
and Soul: Rethinking Sexuality
as Justice-Love
, Marvin Ellison
and Sylvia Thorson-Smith, editors,
The Pilgrim Press, 2003.