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To Live or Not to Live: Our New Found Fear of Living and the Use of Living Wills

In the decades following World War II up until the 1970s a paternalistic model of medical decision-making prevailed: doctors made decisions for patient care, informed patients of what was best for them, and patients complied; a model characterized by what Rita Marker calls a “doctor knows best” mentality [1].  In the last three decades decision making has increasingly followed a “patient autonomy” model: patients receive information about care options and decide for themselves the kind of care they wish to accept.  

In principle, the autonomy model should respect certain human goods better than the paternalistic model by permitting the religious and moral values of a patient to be more determining of critical decisions, even when the doctor does not share them, and by respecting patient self-determination.  

But decision-making in the field of medical care has followed philosophical trends that have shaped decision-making in wider secular society.  The marginalization of the role of traditional authority figures, exaggerated notions of individual liberty, and the questioning of the validity of long-held moral norms have converged to give rise to extreme notions of patient autonomy, especially in regard to end-of-life decision making.  From the Quinlan case in 1976, where the N.J. Supreme Court ruled that patient self-determination entailed the right to refuse medical ventilation (so-called “extraordinary” means of care) when in a state of permanent unconsciousness, to the Cruzan case in 1990, where the U.S. Supreme Court (497 U.S. 261) ruled that it entailed the right to refuse food and water when in the same condition, we now have multiple State laws that protect patients who are not terminally ill, comatose, or even elderly, in refusing life-sustaining treatments without qualification, at any time, for any reason, simply because they want to [2].

In the past fifteen years, partially in consequence of the acceptance of these notions, there has arisen what I have referred to in an earlier brief as an increasingly rigid “refusal mentality” towards the use of life-sustaining procedures [3].  Three factors seem to me most significant in precipitating this.  First, the advance of medicine and healthcare since World War II means that people are living longer.  More live to see the loss of their mental and physical capacities and many must face the dour prospect of institutionalization, sometimes for years, during the sunset period of their life.  Second, the secularization of medicine and cultural loss of Christian faith has caused a kind of cultural amnesia in regard to the Christian meaning of suffering, dying and death. The redemptive value of human suffering, among the most important and exalted doctrines of the Christian religion, informs almost no part of the literature on death and dying in our country, even though close to 80% of the population identifies itself as Christian.  Anything more than the most insipid thoughts about divine judgment (i.e., the hope for heaven and fear of hell) are dismissed as escapist; and the value of people’s lives, including in their own minds, is often calculated on a crude utilitarian basis: “If I’m no longer measurably ‘useful,’ I’ve outlived my usefulness.”  Finally, the breakdown of the moral bonds of community means that more elderly people experience loneliness and alienation when chronic sickness and debilitation set in.  One prominent American bioethicist recently wrote: “many of us now worry that death will come too late—long after life has lost its usefulness and its savor, long after we have ceased to have a ‘life,’ perhaps long after we are even ourselves.” [4]

Thus alongside of the ancient and ineradicable fear of dying, more and more elderly are fearing living too long, being a burden to their caregivers, and languishing in disability during their final days.  The media sensationalizes stories of patients in tragic situations, such as Tony Nicklinson, the 58-year-old British man, whose 2005 stroke left him in a “locked-in syndrome,” fully conscious but almost completely paralyzed from the neck down and unable to speak.  He petitioned—even begged—the U.K. courts to permit him to be euthanized, since his condition prevented him killing himself.  But exercising judicial restraint, the court refused to authorize his assisted dying.  Heart-rending images of Nicklinson weeping when he heard the court’s decision saturated the world press.  His life, he said, was a “living nightmare” [5]; he told his wife the day he died, “I’m already dead—don’t mourn for me” [6].  Nicklinson’s tragic case epitomizes the growing misgiving of many elderly today who fear that—in the words of one bioethicist—their “death [will] come…too slowly and too late” [7]. 

A disturbing consequence of this fear is the rise in the usage of “living-wills”.  I intend to say more about living wills in a future piece.  Here I want only to say that although signing a living will (or a POLST form) is not in itself evil, nevertheless, it is a bad idea.  Because in the absence of a living will or similar type of document, health care workers are required to administer reasonable medical treatment in light of a patient’s presenting condition, the only reason to complete a living will is to prevent medical workers from intervening to sustain life (i.e., to refuse treatment).  Living wills specify in advance that life-sustaining medical procedures should be discontinued in the future in the event that one becomes unable to make one’s own healthcare decisions.  Although decisions to refuse life-sustaining treatments can be legitimate and within precise conditions have been defended in Catholic teaching since Pope Pius XII [8], a simple check-box list of refusal options cannot take into consideration all the possible health contingencies that a person might face in the future.  Patients are better off appointing proxies who are authorized to make healthcare decisions on their behalf in the event of long-term incapacitation.  This can be done legally through the use of a document called a “Health Care Power of Attorney.”

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Notes:

[1] Rita L. Marker, “Obamacare Ruled Unconstitutional: What Now?” Bulletin of the Patients Rights Council, vol. 26, no. 4 (2012), p. 3.

[2] Protecting this expansive view of patient autonomy is a centerpiece of the new POLST model that’s rapidly spreading throughout US healthcare.  POLST, which stands for Physician Orders for Life-Sustaining Treatment, is a type of advance planning document now legal in 15 states with another 30 in the process of “developing” POLST programs.  Seehttp://www.ohsu.edu/polst/programs/state+programs.htm [1] ; see also E.C. Brugger, et al., “POLST and Catholic Healthcare,” Ethics & Medics, vol. 37, no. 1 (Jan. 2012), 1-4; Brugger, “A Critique of the National POLST Paradigm through an Analysis of Colorado’s New MOST Legislation,” The Linacre Quarterly, vol. 78, no. 2 (May 2011), 157-171.

[3] See Brugger, “Carrying Out End-of-Life Refusal Orders in a ‘Culture of Refusal’: Two Criteria to Determine Licitness of Rejecting Life Sustaining Treatment,” Zenit World News Service, July 4, 2012; available at http://www.zenit.org/article-35131?l=english [2]

[4] John Hardwig, “Going to Meet Death: The Art of Dying in the Early Part of the Twenty-First Century,” Hastings Center Report, vol. 39, no. 4 (2009), 37-45, quote on p. 38. 

[5] See New York Times article the day after he died; available athttp://www.nytimes.com/2012/08/23/world/europe/tony-nicklinson-who-fought-for-assisted-suicide-is-dead.html?_r=0 [3]

[6] Reported in the U.K. on line news, the Mirror on Aug. 28, 2012; available athttp://www.mirror.co.uk/news/uk-news/tony-nicklinson-final-request-revealed-1284650 [4] 

[7]  See Hardwig article in note 4 above.

[8] Pope Pius XII, The Prolongation of Life: An Address to an International Congress of Anesthesiologists, 1957; see also the Congregation for the Doctrine of the Faith, Declaration on Euthanasia (sec. IV); United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Facilities, nos. 56 & 57.

 
Bioethics
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In the decades following World War II up until the 1970s a paternalistic model of medical decision-making prevailed: doctors made decisions for patient care, informed patients of what was best for them, and patients complied; a model characterized by what Rita Marker calls a “doctor knows best” mentality [1]. In the last three decades decision making has increasingly followed a “patient autonomy” model: patients receive information about care options and decide for themselves the kind of care they wish to accept.
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