title: When doctors and daughters disagree: twenty-two days and two blinks of an eye.
abstract: A cornerstone of American medical ethics is the right to say, "Keep your hands off of me," to decline medical treatment. A central problem is how to decide about individuals who have become incapacitated and can no longer request or refuse potentially life-sustaining treatment. An advance directive is a formal attempt to protect people's right to autonomy when they are no longer autonomous. As such, it assumes that previously expressed wishes are precise and immutable, but many families make decisions together, and individuals may negotiate, compromise, and modify their genuine preferences, especially when novel threats arise, and the stakes are high. The current article describes a case in which two daughters overruled a patient's explicit preference to refuse life-sustaining treatment, leading to burdensome illness before death. In the end, the mother seemed to understand her children's needs and seemed willing, at least in retrospect, to have met those needs. After the death of this individual, we continued to talk with the daughters and videotaped an interview in which they shared their perspectives on the case. The daughters consented to be videotaped and to share the video with the medical community (available in online version of article). Their forceful devotion to their mother and their search in retrospect for what could have been done differently has completely changed our understanding of events. We believe that the daughters' behavior is not the indefensible breach of respect for person that it seemed to be. Their mother's true wishes might well have included a desire to help her children during her own dying. Family members' preferences are likely to be important considerations for many people, although the possibility of coercion has to be acknowledged as well. Accommodating this level of decision-making complexity is highly problematic for our understanding of advance directives.
authors.affiliation: Division of Geriatric Medicine and Gerontology, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
authors.forename: Peter M
authors.initials: PM
authors.lastname: Abadir
authors.forename: Thomas E
authors.initials: TE
authors.lastname: Finucane
authors.forename: Matthew K
authors.initials: MK
authors.lastname: McNabney
mesh_terms: D024362:Advance Directive Adherence / Q000941:ethics; D000369:Aged, 80 and over; D034462:Dissent and Disputes; D005260:Female; D006801:Humans; D008020:Life Support Care / Q000941:ethics; D009679:Nuclear Family; D013997:Time Factors
references.citation: Am J Crit Care. 2006 Jan;15(1):65-77
references.pmid: 16391316
references.citation: Ann Intern Med. 2010 Aug 17;153(4):256-61
references.pmid: 20713793
references.citation: J Am Geriatr Soc. 2000 May;48(S1):S194-8
references.pmid: 10809475
references.citation: J Clin Ethics. 1999 Winter;10(4):286-93
references.pmid: 10791278
references.citation: J Clin Ethics. 1993 Summer;4(2):155-65
references.pmid: 8334279
references.citation: Soc Sci Med. 1999 Jun;48(12):1779-89
references.pmid: 10405016
references.citation: BMJ. 2002 Jul 20;325(7356):125
references.pmid: 12130597
references.citation: Ciba Symp. 1962;10:62-70
references.pmid: 13916348
references.citation: Crit Care Med. 2002 Jul;30(7):1439-45
references.pmid: 12828184
references.citation: Am J Geriatr Psychiatry. 2006 Aug;14(8):659-67
references.pmid: 16861370
references.citation: Hastings Cent Rep. 2004 Mar-Apr;34(2):30-42
references.pmid: 15156835
references.citation: J Pain Symptom Manage. 2005 Oct;30(4):342-53
references.pmid: 16256898
references.citation: J Am Geriatr Soc. 2007 Dec;55(12):1981-8
references.pmid: 18031490
references.citation: Am J Psychiatry. 2009 Feb;166(2):182-8
references.pmid: 18923066
references.citation: JAMA. 1992 Jan 1;267(1):59-63
references.pmid: 1489360
references.citation: Arch Intern Med. 1996 May 27;156(10):1062-8
references.pmid: 8638992