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Controlling Death: The False Promise of Advance Directives

Henry S. Perkins, MD
[+] Article and Author Information

From the Ecumenical Center for Religion and Health and The University of Texas Health Science Center at San Antonio, San Antonio, Texas.


Acknowledgments: The author thanks Lawrence Kimmel, PhD; Susan Bagby, MA; and The University of Texas Health Science Center Faculty Ethics and Humanities Journal Club, who made thoughtful suggestions about earlier drafts.

Potential Financial Conflicts of Interest: None disclosed.

Requests for Single Reprints: Henry S. Perkins, MD, Division of General Medicine, Department of Medicine, The University of Texas Health Science Center, 7703 Floyd Curl Drive, San Antonio, TX 78229-3900.


Ann Intern Med. 2007;147(1):51-57. doi:10.7326/0003-4819-147-1-200707030-00008
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Advance directives promise patients a say in their future care but actually have had little effect. Many experts blame problems with completion and implementation, but the advance directive concept itself may be fundamentally flawed. Advance directives simply presuppose more control over future care than is realistic. Medical crises cannot be predicted in detail, making most prior instructions difficult to adapt, irrelevant, or even misleading. Furthermore, many proxies either do not know patients' wishes or do not pursue those wishes effectively. Thus, unexpected problems arise often to defeat advance directives, as the case in this paper illustrates. Because advance directives offer only limited benefit, advance care planning should emphasize not the completion of directives but the emotional preparation of patients and families for future crises. The existentialist Albert Camus might suggest that physicians should warn patients and families that momentous, unforeseeable decisions lie ahead. Then, when the crisis hits, physicians should provide guidance; should help make decisions despite the inevitable uncertainties; should share responsibility for those decisions; and, above all, should courageously see patients and families through the fearsome experience of dying.

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advance care planning
Posted on July 4, 2007
Paul F McIntyre
Dalhousie University
Conflict of Interest: None Declared

I enjoyed Dr. Perkins' article Controlling Death: The False Promise of Advance Directives, Henry S. Perkins, MD , Ann Intern Med. 2007;147:51- 57. Of interest was his identification of preparing the patient and family for uncertainty and changes in health status as a primary goal of advance care planning.

I recently attended the inaugaural Canadian Advance Care Planning conference in Calgary which featured the "Respecting Choices" model. 1,2

This model, despite its name, stresses the 'social purpose" of advance care planning, consistent with Dr. Perkins' emphasis on the communication and coaching function of the physician in this context.

Given the reimbursement obstacles to primary care physicians fulfilling this role, training other health care providers to have meaningful conversations with patients is an approach worth exploring. 3,4,5

1. Patient-Centered Advance Care Planning in Special Patient Populations: A Pilot Study. Briggs, et al. J Prof Nurs 2004

2. Briggs, L. Shifting the focus of advance care planning: using an in-depth interview to build and strengthen relationships. J Palliat Med. 2004

3.http://www.fraserhealth.ca/HealthInfo/AdvanceCarePlanning/default.htm

4. http://www.calgaryhealthregion.ca/carenlife/index.htm

5. http://www.respectingpatientchoices.org.au/index.php

Conflict of Interest:

None declared

Another Flaw in Advance Directive Concept
Posted on July 5, 2007
Sam F Carter
Murfreesboro Medical Clinic
Conflict of Interest: None Declared

Sharing Perkins' hope for improvement in advance care planning (1), I would like to add an observation from a primary care practice of over 30 years during which I have offered an advance directive to all of my patients and discussed with them the broad concept. While a limited number have completed the advance directive, essentially all have expressed the wish to forego life support in a situation which looks hopeless (one patient was willing to say only that she wanted her family to make decisions if she were unable). I have noted this wish in my patients' records and have found that notation helpful in subsequent end- of-life discussions with families. Based on this observation, I think the greatest flaw in the advance directive concept may be the underlying assumption that, unless otherwise indicated, people want to be kept alive in conditions such as a persistent vegetative state. It might make more sense to continue to make advance directives available to everyone, but to shift the burden of necessary documentation to those rare individuals who want to continue care which appears futile to their medical providers.

Frank Carter, MD Murfreesboro Medical Clinic Murfreesboro, TN 37130

1. Perkins HS. Controlling Death: the False Promise of Advance Directives. Ann Intern Med. 2007;147:51-57.

Conflict of Interest:

None declared

Deceased Organ Donation and Advance Health Care Directives
Posted on July 5, 2007
Joseph Verheijde
Mayo Clinic Hospital, Mayo Clinic Arizona, Arizona, USA, 85054,
Conflict of Interest: None Declared

To the Editor

We applaud Dr. Perkins on pointing current deficiencies of construction, documentation, accessibility and application of advance directives about health care decisions (1). We appreciate that advance care planning should prepare patients and families about uncertain and difficult decisions in future medical crises. We posit that Dr. Perkins' article would even have gained strength had he included the significant impact of organ donation on choices about life-support procedures at the end-of-life.

In 2006, the publication of two influential reports from the Institute of Medicine and National Conference on Donation after Cardiac Death (DCD) opened a new era for deceased organ donation (2, 3). Individuals who sustain circulatory or cardiorespiratory arrest, irrespective of antecedent brain death, can become prospective organ donors. The two reports declare that the transplant community and health regulatory agencies consider DCD an ethically acceptable form of organ donation.

The Uniform Anatomical Gift Act (UAGA) was revised in 2006 to increase the opportunities for organ procurement with special interest in DCD(4). When addressing the effect of anatomical gift on an individual's advance health-care directives, section 21, "provides that measures necessary to ensure the medical suitability of a part not be withdrawn while an examination is being made to determine whether an individual who has been referred to a procurement organization has a part that could be the subject of an anatomical gift. If, following such an examination, it is determined by the procurement organization that the individual has a part that could be the subject of an anatomical gift, the individual is a prospective donor under this [act] unless the individual had signed a refusal". The section also comments that "Measures necessary to insure the medical suitability of an organ for transplantation or therapy may not be withheld or withdrawn from a prospective donor who has an advance health- care directive or declaration unless the directive or declaration expressly provides to the contrary." This section of the UAGA presumes that for a prospective organ donor the desire to save lives by making an anatomical gift trumps the desire to have life support systems withheld or withdrawn. The revision of the UAGA has generated national media attention because: 1) an individual's intent to donate organs is presumed unless expressed to the contrary and 2) the use of life-sustaining therapy at end -of-life can override his (her) own expressed wishes (5).

In 2007, an amendment to section 21 was approved recognizing the existence of a potential conflict between the use of life-support procedures based on the presumption of an individual to become an organ donor and the expressed wishes of the individual regarding end-of-life care. The amendment states "If a prospective donor has a declaration or advance health-care directive, and the terms of the declaration or directive and the express or implied terms of a potential anatomical gift are in conflict with regard to the administration of measures necessary to ensure the medical suitability of a part for transplantation or therapy, the prospective donor's attending physician and prospective donor shall confer to resolve the conflict".("¦) "The conflict must be resolved as expeditiously as possible". The amendment includes "Before resolution of the conflict, measures necessary to ensure the medical suitability of the part may not be withheld or withdrawn from the prospective donor if withholding or withdrawing the measures is not contraindicated by appropriate end-of-life care".

It is imperative for the general public and medical community to become familiar with the new legislation with regard to organ donation, so that advance directives symbolize medicine's recent commitment to "patient empowerment" and avoid "uncertain presumption" about end-of-life care.

Kay Miller, MD. Department of Internal Medicine, Mayo Clinic Hospital, Mayo Clinic Arizona, Phoenix, Arizona, USA

Joseph L. Verheijde, PhD MBA PT. Adjunct Professor of Bioethics, Arizona State University, Department of Physical Medicine and Rehabilitation, Mayo Clinic Hospital, Mayo Clinic Arizona, Phoenix, Arizona, USA

Joan L. McGregor, PhD. Lincoln Professor of Bioethics, Department of Philosophy, Arizona State University, Professor of Basic Medical Sciences, Director Biomedical Ethics and Medical Humanities, College of Medicine- Phoenix, University of Arizona, Phoenix, Arizona, USA

Mohamed Y. Rady, MD PhD. Professor/Consultant, Critical Care Medicine, Department of Critical Care Medicine, Mayo Clinic Hospital, Mayo Clinic Arizona, Phoenix, Arizona, USA

References

1. Perkins HS. Controlling Death: The False Promise of Advance Directives. Ann Intern Med. 2007;147:51-57.

2. Committee on Increasing Rates of Organ Donation-Board on Health Sciences Policy-Institute of Medicine. Organ Donation: Opportunities for Action. . Washington, D.C.: The National Academies Press; 2006.

3. Bernat JL, D'Alessandro AM, Port FK, et al. Report of a National Conference on Donation after Cardiac Death. Am J Transplant. 2006;6:281- 291.

4. National Conference of Commissioners on Uniform State Laws. Revised Uniform Anatomical Gift Act (2006) and Amendment to Section 21 (2007) http://www.anatomicalgiftact.org/DesktopDefault.aspx?tabindex=0&tabid=1 Accessed July 5, 2007.

5. Stein R. States Revising Organ-Donation Law. The Washington Post. Wednesday, April 4, 2007; Page A01. . http://www.washingtonpost.com/wp- dyn/content/article/2007/04/03/AR2007040302062.html. Accessed July 5, 2007.

Conflict of Interest:

None declared

False Promises
Posted on July 13, 2007
Kenneth J. Simcic
University of Texas Health Sciences Center/San Antonio
Conflict of Interest: None Declared

Perkins (1) offers a refreshing perspective on advance directives and states what many physicians have known or suspected for a long time- advance directives are of little or no benefit in many, if not most, end- of-life situations. This is undoubtedly why so few physicians have advance directives.

I agree that we should not completely discard the advance directive concept because advance directives do have value in at least two situations. The first is the patient who due to advanced age or very poor health is absolutely certain that he or she is ready to die a natural death when that time comes. These patients can clearly specify in writing that they want "do not resuscitate" status in the event of cardiac or respiratory arrest. They can then make this known to every member of their family and/or all close friends.

The second situation is the patient who does not trust a certain family member to make medical decisions for them. This family member may fall in the "next-of-kin" hierarchy that would make medical decisions for the patient by law should the patient become incompetent to make those decisions. Patients in this situation should draft a durable power of attorney for healthcare that clearly excludes untrustworthy family members from the decision-making process.

Perhaps the greatest danger of current advance directives is that patients may unknowingly sign away their right to basic treatments such as provision of food and water in the event of serious illness complicated by incompetence. It could be argued that cases involving withdrawal of nutrition and hydration are so complex that these situations should not be included in those legally encompassed by advance directives.

Patients are sometimes led to believe that if they don't sign an advance directive, they might be guilty of leaving the "burden" of difficult medical decisions to their family. But isn't this one of the ultimate responsibilities for a family? How many articles on death and dying issues have ended with the conclusion that the solution lies in "more and better use of advance directives". The time has come for physicians (and the media) to stop exaggerating the benefits of advance directives.

Kenneth J. Simcic, M.D., FACP, FACE University of Texas Health Sciences Center San Antonio, Texas

1. Perkins HS. Controlling Death: The False Promise of Advance Directives. Ann Intern Med. 2007;147:51-57.

Conflict of Interest:

None declared

A Promise in Search of a Plan
Posted on July 20, 2007
Gerlyn M. Brasic
Gundersen Lutheran Medical Center
Conflict of Interest: None Declared

To the Editor:

"Every system is perfectly designed to produce the outcomes it achieves." Dr. Perkins' article (1) underscores this point. While many patients believe that completing an advance directive improves their chances that their choices will be respected (2), the tragic events of this story demonstrate that health systems are often unprepared to recognize, and honor a patient's preferences even when they are quite specifically stated.

The failure in Dr. Perkins' story is not in a flawed advance directive but in the failure of the primary physician to establish a support structure, such as hospice, to keep Mr. Jones comfortable at home and to include his daughter in the planning. Lacking such support, it is not surprising that Mrs. Jones brought Mr. Jones to the hospital for management of his dyspnea. At that point, the hospital failed to provide the resources to address the daughter's concern and honor the patient's clear wishes, such as an ethics consult or involvement of a palliative care team. The end result was that Mr. Jones was hospitalized against his wishes for expensive medical care that he specifically did not want.

A recent report by the Citizens Health Care Working Group highlighted concerns with the quality of care at the end of life. This report noted that more than 50% of Americans wish to die at home, but only 15% are able to do so. It also noted that 25% of our health care dollars are spent in the last year of life and that care doesn't always improve quality or length of life (3), as is poignantly demonstrated in Mr. Jones' story.

End of life planning needs to: 1. Ensure that patients and families clearly understand the health condition, 2. Design a plan around the patient's beliefs and values, 3. Store the plan in a rapidly retrievable format throughout the health system, 4. Commit system-wide to honoring the plan.

Completing an advanced directive without these components in place is similar to having a patient sign a consent form for surgery without arranging OR time, support staff, and a surgeon to perform the procedure"”then being surprised and upset when the procedure does not happen, despite the appropriately signed and discussed consent form in the record. Is the problem a flawed consent form? Where a more systematic approach to advance care planning has been taken, a high degree of success has been achieved (4,5).

References:

1. Perkins, HS. Controlling Death: The False Promise of Advance Directives. Ann Intern Med. 2007;147(1):51 - 57.

2. Perkins, HS, Cortez, JD, Hazuda, HP. Advance care planning: does patient gender make a difference? Am J of the Med Sci. 2004;327(1):25-32.

3. Citizens Healthcare Working Group. Health care that works for all Americans. Health report to the American people. http://www.citizenshealthcare.gov. 2006.

4. Hammes BJ, Rooney BL. Death and end-of-life planning in one midwestern community. Arch of Int Med. 1998;158:383-90.

5. Tolle, SW, Tilden, VP, Nelson, CA, Dunn, PA. A prospective study of the efficacy of the physician order form for life-sustaining treatment. J of Am Ger Soc. 1998; 46:1097-1102.

Conflict of Interest:

Gundersen Lutheran Medical Foundation sponsors the Respecting Choices program, and Dr. Hammes receives a portion of his salary for work in that program.

Hospice needed
Posted on July 25, 2007
Jerry J. Robbins
No Affiliation
Conflict of Interest: None Declared

I agree with much of Dr Perkins' perspective on the problem of advanced directives. However, I would have strongly encouraged the primary care provider for "Mr. Jones" to have referred the patient AND HIS FAMILY to hospice for end of life care. I believe that hospice care would have been best able to help the patient through to the end of his life by helping the daughter accept her father's wishes, by helping the wife to be a strong advocate for her husband's wishes, and to be another source of continuity of care for the patient in addition to the PCP.

Conflict of Interest:

None declared

Can't We Improve on Advance Directives?
Posted on August 19, 2007
Henry S. Perkins
The University of Texas Health Science Center at San Antonio
Conflict of Interest: None Declared

These commentators represent a wide range of views about advance directive (AD) usefulness. Dr. Simcic expresses a skepticism like mine. Dr. Carter gives ADs modest support, using them for now but hoping for better approaches in the future. Drs. Brasic and Hammes believe strongly that current ADs prevent overly aggressive treatment of dying patients, save resources, and promote comfort.

The view of Brasic and Hammes, whose end-of-life work I admire, differs most from my own. I believe their enthusiasm for ADs rests on two faulty assumptions. One is that future illness is sufficiently predictable to permit useful advance instructions about care. Two studies indicate otherwise. One study found that despite receiving detailed patient-specific prognoses physicians typically wrote no-resuscitation orders no sooner than two days before patients died, suggesting that "hopelessness" becomes apparent only late in patients' courses(1). Another study involved frequent functional assessments of seniors before they died. Functional decline followed five patterns, each accounting for about 20% of deaths: treatable but eventually terminal disease such as cancer (slow decline over months, then a rapid decline to death); organ system failure such as heart failure (waxing and waning function with frequent rescues up to an unpredictable death); chronic frailty such as dementia (low and slowly diminishing function with an unpredictable death); sudden death; and "unclassifiable"(2). Today's patients, often suffering multiple diseases simultaneously, might follow any of several possible patterns. The attendant unpredictability severely limits ADs' usefulness in planning care.

The second assumption is that people behave logically and consistently. As my own studies suggest, few patients who believe that ADs can promote their care wishes actually sign them(3). Furthermore, many signers do not grasp the implications of their ADs (which may, therefore, inaccurately reflect their wishes for the crisis), many proxies do not understand patients' wishes(4) or act on them faithfully, and many physicians do not incorporate those wishes into treatment.

I long believed in the predictive powers of medicine and in the rationality of patients, so I advocated vigorously for ADs. Yet repeated disappointments with ADs have tempered my enthusiasm(5). I now believe ADs have only a limited role in prompting and structuring advance care planning, and their impact must not be exaggerated. I also believe there must be a better way to prepare patients, families, and health professionals for the arduous, unpredictable trials of end-of-life care. We health professionals must take the lead in finding that better way (TOTAL WORDS = 400)

References

1. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. JAMA 1996;275(16):1232.

2. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA 2003;289(18):2387-92

3. Perkins HS, Geppert CMA, Gonzales A, Cortez JD, Hazuda HP. Cross-cultural similarities and differences in attitudes about advance care planning. J Gen Intern Med 2002;17:48-57.

4. Uhlmann RF, Pearlman RA, Cain KC. Physicians' and spouses' predictions of elderly patients' resuscitation preferences. J Gerontol 1988;43:M115-21.

5. Perkins HS. Time to move advance care planning beyond advance directives. Chest 2000;117:1228-31.

Improving on Advance Directives: Reforming physicians' behavior in the Care of Dying Patients
Posted on August 22, 2007
Mohamed Y Rady
Professor, Critical Care Medicine, Mayo Clinic Hospital, Mayo Clinic Arizona
Conflict of Interest: None Declared

It is not the unpredictability of death, but physicians' behavior in the care of dying patients and misinterpretation about what patient and family centered end-of-life care entails that severely limit the usefulness of advanced directives.

The vast majority of elderly patients suffering multiple diseases simultaneously are subjected to trials of ineffective aggressive treatment in intensive care units and often without disclosing alternative options of end-of-life care (1). In an epidemiologic study of use of intensive care at the end-of-life in the United States (US), about one in five Americans die using intensive care unit services (2). With the current physicians' practice pattern, that ratio is likely to rise and creat worse crisis in both the quality of care rendered to the dying and availability of health care resources.

First, physicians often fail to set realistic goals consistent with patient's disease severity, values, preferences and beliefs. Physicians do not effectively communicate short and long term benefits, risks and consequences of aggressive treatment trials including life support therapy to patients and families and often culminate in flawed decision making process at the end-of-life (3).

Second, institutional characteristics rather than patients' illness or preferences can dictate decisions on the pursuit of aggressive treatment and delaying do-not-resuscitate orders (4). Institutional availability of high intensity resources and specialised services including intensive care correlate with preferential utilization as substitutes for palliative or hospice care in the last six months of life (5). High intensity services and life-sustaining treatments are better reimbursed than palliative or hospice care services at the end-of-life (6).

Third, in a national survey published in 2006, over 75% of US intensive care units do not track quality measures for end-of-life care or palliation of dying patients (7). The majority of intensive care units reported institutional obstacles and lack of resources to comply with the quality indicators recommended by the Robert Wood Johnson Foundation Critical Care End-Of-Life Peer Workgroup (8).

Fourth, physicians' are often unaware that misguided decisions about trials of aggressive treatment at the end-of-life care are not only disruptive to dying patients but also have profound distressing experiences on families and other health care providers (9, 10).

It is premature to disregard the role of advance directives in planning care, because of the imperfections of current medical practice. I agree with Dr Perkins that health care professionals must take the lead to confront and correct the imperfections of prevailing medical practice and only then advance directives can prove to be useful.

1. Rady MY, Johonson DJ. Admission to intensive care unit at the end- of-life: is it an informed decision? Palliative Medicine. 2004.

2. Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end of life in the United States: An epidemiologic study. Crit Care Med 2004;32:638-643.

3. White DB, Braddock CH, III, Bereknyei S, Curtis JR. Toward Shared Decision Making at the End of Life in Intensive Care Units: Opportunities for Improvement. Arch Intern Med 2007;167:461-467.

4. Zingmond DS, Wenger NS. Regional and institutional variation in the initiation of early do-not-resuscitate orders. Arch Intern Med. 2005 165:1705-1712.

5. Wennberg JE, Fisher ES, Stukel TA, Skinner JS, Sharp SM, Bronner KK. Use of hospitals, physician visits, and hospice care during last six months of life among cohorts loyal to highly respected hospitals in the United States. Br Med J. 2004;328:1-5.

6. Wright AA, Katz IT. Letting Go of the Rope -- Aggressive Treatment, Hospice Care, and Open Access. N Eng J Med. 2007;357:324-327.

7. Nelson JE, Angus DC, Weissfeld LA, et al. End-of-life care for the critically ill: A national intensive care unit survey. Crit Care Med. 2006;34:2547-2553.

8. Clarke E, Curtis J, Luce J, et al. Quality indicators for end-of- life care in the intensive care unit. Crit Care Med. 2003;31:2255-2262.

9. Mobley M, Rady MY, Verheijde J, Patel B, Larson J. The relationship between moral distress and perception of futile care in the critical care unit. Available at http://dx.doi.org/10.1016/j.iccn.2007.03.011. Intensive & Crit Care Nurs. 2007;10.1016/j.iccn.2007.03.011.

10. Lautrette A, Darmon M, Megarbane B, et al. A Communication Strategy and Brochure for Relatives of Patients Dying in the ICU. N Eng J Med. 2007;356:469-478.

Conflict of Interest:

None declared

Don't Blame Advance Directives for Poor End-of-Life Care
Posted on August 30, 2007
Gerald W. Neuberg
Columbia University Medical Center
Conflict of Interest: None Declared

To the Editor:

Dr. Perkins' (1) condemnation of advance directives (ADs) is unfortunate. ADs certainly help express patients' philosophy and wishes regarding end-of- life care. Where decisions are restricted by law, the value of such documentation is self-evident. Here in New York, artificial nutrition and hydration cannot be withheld without clear evidence of patients' wishes, and life support cannot removed without clear evidence or proxy power. More importantly, ADs signal a patient's acceptance of his or her mortality and represent a permission slip for the family to let go when the time comes.

No one ever promised that ADs would provide "instructions for all possible situations" or absolve us from "careful adjudication" or "uncomfortable decisions based on interpretation." Likewise, ADs shouldn't be blamed for misinformed patients, inept proxies, unrealistic family members, or other dilemmas. Obviously, discussion and planning mustn't end when the form is completed.

Regarding the patient whose clear instructions to avoid mechanical ventilation were supported by his wife-proxy but "vehemently" opposed by his daughter, we agree that the "risk management committee" was wrong to capitulate to the daughter despite the known wishes of patient and proxy. At our institution and many others, such conflicts are referred to a medical ethics committee that functions outside the risk management department and is empowered to defend patients' rights. The professional staff at the hospital described by Dr. Perkins should demand such protections for their own patients.

But when the patient expressed an active wish to forego all heroic measures (even for a treatable pneumonia), his physician should have issued a DNR/DNI order, not just an AD, which typically calls for future institution of comfort care only in the event of irreversible deterioration. ADs remain underused but, since the Schiavo case, Americans better understand the value of documenting their preferences in case of irreversible illness. We should encourage this trend, not oppose it.

Gerald W. Neuberg MD, Kenneth M. Prager MD, Department of Medicine, Columbia University Medical Center, New York NY

1. Perkins HS. Controlling Death: The false promise of advance directives. Ann Int Med. 2007;147:51-57.

Conflict of Interest:

None declared

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