Correspondence
Treatment Preferences of Seriously Ill Patients
N Engl J Med 2002; 347:533-535August 15, 2002
- Article
To the Editor:
The study by Fried et al. (April 4 issue)1 demonstrates that many people with severe illnesses are even more concerned about becoming disabled than about dying. Some opponents of the right to assisted dying argue that these persons are unduly influenced by negative societal views of disability.2 Although we agree that such conceptions are harmful, these persons are entitled to autonomy during their final days; their concern about losing control of their bodies and minds warrants respect.
We agree with the point made by Meier and Morrison, in their accompanying editorial,3 that many factors in our health care system limit patients' choices and their autonomy. These issues are even more relevant when seriously ill people also have major disabilities.4 Physicians should play a more active part in helping patients achieve real autonomy. With appropriate assistance, more patients and their families can understand the trade-offs and make sound decisions that are based on their values and concerns and on the outcome assessments available to them.
The actual outcomes of disability are often not as devastating as many patients imagine; many people with disabilities have a good quality of life. Persons with terminal illnesses should be able to make their own decisions on the basis of good information. The medical profession should be a primary source of that information and a primary advocate for expanding patients' autonomy.
4 ReferencesAndrew I. Batavia, J.D.
Florida International University, Miami Beach, FL 33140
batavia1957@hotmail.com Lauro S. Halstead, M.D., M.P.H.
National Rehabilitation Hospital, Washington, DC 200101
Fried TR ,Bradley EH ,Towle VR ,Allore H . Understanding the treatment preferences of seriously ill patients. N Engl J Med 2002;346:1061-1066
Full Text | Web of Science | Medline2
Batavia AI . Disability and physician-assisted suicide. N Engl J Med 1997;336:1671-1673
Full Text | Web of Science | Medline3
Meier DE ,Morrison RS . Autonomy reconsidered. N Engl J Med 2002;346:1087-1089
Full Text | Web of Science | Medline4
Batavia AI . The relevance of physician and disability data on the right to physician-assisted suicide: can studies resolve the issue? Psychol Pub Policy Law 2000;6:546-558
CrossRef | Web of Science | Medline
To the Editor:
Fried et al. demonstrate that “the possibility of functional or cognitive impairment has a particularly important role in patients' preferences and thus merits explicit consideration in advance care planning.” This has often been difficult to translate into advance directives, because typical directives ignore cognitive and functional outcomes, conflate the terms “terminal illness” and “irreversible illness,” and focus primarily on decisions in the setting of imminent death.
A new advance directive in Texas allows patients to request or reject life-sustaining treatment on the basis of the cognitive and functional outcomes, benefits, and burdens of such treatment in the setting of either a terminal condition or an irreversible condition. A terminal condition is defined as one that is expected to cause the patient's death within six months, even with continued life-sustaining treatment. In addition, Texas law describes an irreversible illness as a functional condition, rather than a specific disease, that is treatable but not curable, that is so severe it leaves the patient unable to care for or make decisions for himself or herself, and that is fatal without life-sustaining treatment. This definition is readily understood by elderly patients. It can allow a patient who fears being trapped in total dependency to direct that life-sustaining treatments be withheld and death be allowed to come as gently as possible, even if the patient is not terminally ill. As the study by Fried et al. suggests, most patients opt for having life-sustaining treatment withdrawn rather than being kept alive in this irreversible condition. More flexible advance directives, such as that available in Texas, are needed elsewhere. The Texas advance directive can be viewed at http://www.capitol.state.tx.us/statutes/he/he0016600.html.
Robert L. Fine, M.D.
Baylor Health Care System, Dallas, TX 75204
robertf@baylorhealth.edu To the Editor:
In 20 years as a general internist and geriatrician, I have seen a spectrum of willingness on the part of patients and families to limit care. Our health care system gives little support to comfort care and tremendous support to surgical and intensive care. Meier and Morrison make the point that we doctors tend to do what we are financially rewarded to do. Because of poor reimbursement for cognitive services, which include talking and planning with patients, many primary care physicians are limiting their Medicare practice and forcing elderly patients to seek care elsewhere.1 Despite an excellent intervention, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) was unable to help cardiologists and oncologists move to supportive care, partly because these specialists have been reinforced more for interventions than for support.2
2 ReferencesMary A. Shepard, M.D.
Northwest Permanente, Vancouver, WA 98661-4399
mary.a. shepard@kp. org 1
Freudenheim M. V.A. health care strained by big wave of enrollees. New York Times. April 6, 2002:A1.
2
The SUPPORT Principal Investigators
CrossRef | Web of Science
To the Editor:
Most experienced physicians know that in the United States, patients at the end of their lives often receive unwanted care, and are asked to make decisions when they are too sick to think clearly. Meier and Morrison failed to discuss the role of the vanishing primary care doctor in this context. Who else would remember past conversations? Who would be more likely to have earned the patient's trust?
Richard Adair, M.D.
Abbott Northwestern Hospital, Minneapolis, MN 55405Author/Editor Response
The authors reply:
To the Editor: Our study highlighted the importance of treatment outcomes in the preferences of seriously ill older persons. The responses to our report raise several issues growing out of the effort to incorporate these preferences into clinical practice. We share Batavia and Halstead's concern about the particular difficulties in honoring the preferences of disabled seriously ill persons. Beyond “negative societal views of disability,” physicians have been shown to give the quality of life of chronically ill older persons a lower rating than do patients themselves.1 To promote patients' autonomy, physicians should discuss treatment outcomes with their patients without imposing their own biases with regard to the value of these outcomes.
We applaud the effort in Texas to create a new advance-directive document, as described by Dr. Fine. However, this directive is based on patients' acceptance or rejection of specific treatment interventions once they are in a state of severe functional or cognitive impairment, or both. We hope that the results of our study will lead to new documents that will allow patients to express their preferences in terms of their valuation of the health states resulting from specific interventions. Such documents may help ensure that patients do not end up in undesired states.
Finally, we share Dr. Shepard's concern about financial incentives that discourage advance care planning and the provision of palliative-care services.
1 ReferencesTerri R. Fried, M.D.
Veterans Affairs Connecticut Healthcare System, West Haven, CT 06516
terri.fried@yale. edu Elizabeth H. Bradley, Ph.D.
Yale University School of Medicine, New Haven, CT 065201
Uhlmann RF ,Pearlman RA . Perceived quality of life and preferences for life-sustaining treatment in older adults. Arch Intern Med 1991;151:495-497
CrossRef | Web of Science | Medline
