Orders not to resuscitate and the psychiatric hospital - Springer Link

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Not Resuscitate (DNR) policies, this may be a good place to begin an ... cally ill, debilitated, or mentally impaired do not receive the same level of aggressive.
ORDERS N O T T O R E S U S C I T A T E AND T H E PSYCHIATRIC HOSPITAL Francine Cournos, M.D.

In 1983, the President's Commission for the Study of Ethical Problems in Medicine recommended that all health care institutions be required to develop appropriate policies and procedures for withholding life-sustaining treatment from terminally ill patients. While such policies have been extensively debated, there has been little discussion of the problem in the psychiatric literature. Yet state mental hospitals handle many terminally ill patients, often without having clarified their medical responsibilities. This article focuses on Do Not Resuscitate (DNR) policies in psychiatric settings. It offers illustrative case examples and reviews the important principles and legal decisions that pertain to DNR policies. In hospitals that have no clearly defined medical standards, patients often receive inferior care. The need to develop DNR policies presents an opportunity to discover more thoughtful approaches to medical care in psychiatric hospitals. While both the p o p u l a r press and the medical literature have dealt extensively with the question o f withholding medical treatment from terminally ill patients, the psychiatric literature is almost barren of information on the subject. This may be because, at least at first glance, the subject seems of little urgency in a psychiatric setting. Yet the problem is as pressing for the psychiatric hospital as for the general medical facility. In New York State, for example, the state mental hospital census averaged about 21,000 d u r i n g the period from April 1982 through March 1984. Approximately 9,200 (44%) o f these patients were over 65, and 2,654 patients died, primarily from intercurrent medical illness~L Each o f these deaths potentially represents such ethical dilemmas as when to transfer a patient to a general medical hospital, how aggressive medical care should be, and when to give or withhold resuscitation. Since regulatory agencies are now moving toward requiring hospitals to have Do Not Resuscitate (DNR) policies, this may be a good place to begin an examination of the b r o a d e r question of the m a n a g e m e n t o f the terminally ill in mental hospitals. This article will review the principles behind DNR policies as well as some o f the relevant legal decisions. T h e ability to successfully resuscitate patients has dramatically altered the moThe author acknowledgesthe assistanceofJames Bakalar,J.D., Paul Litwak,J.D., and Jamie Benfield, J.D. Please address reprint requests to Dr. Cournos, Director, Washington Heights Community Service, New York State PsychiatricInstitute, 722 West 168th Street, New York, NY 10032. 24

PSYCHIATRIC QUARTERLY, 58(1) Spring 1986-1987 ~ 1986-t987 Human Sciences Press

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m e n t o f death. D N R policies were developed when the universal application o f c a r d i o p u l m o n a r y resuscitation came to be viewed, for a variety o f reasons, as inconsistent with the h u m a n e care o f terminally ill patients. CPR is a heroic m e a s u r e that causes considerable t r a u m a to the patient, has a high rate of failure, a n d leads to significant morbidity a m o n g patients who surviveL I n 1983 T h e President's Commission for the Study of Ethical Problems in Medicine a n d Biomedical a n d Behavioral Research 4 r e c o m m e n d e d that health care institutions be r e q u i r e d to develop a p p r o p r i a t e policies a n d procedures. T h e literature on the subject concerns mainly g e n e r a l medical hospitals. Little has b e e n written on D N R policies for other health care settings, i n c l u d i n g n u r s i n g homes, institutions for the mentally retarded, a n d psychiatric hospitals.

DNR POLICIES AND THE PSYCHIATRIC HOSPITAL No psychiatric d i s o r d e r is ordinarily fatal, so the decision to withhold resuscitation n e e d n e v e r arise in the t r e a t m e n t o f a psychiatric illness. But since public m e n t a l hospitals treat m a n y terminally ill psychiatric patients, staff are routinely conf r o n t e d with c o m p l e x medical decisions. As H i l f i k e ยข points out, " T h e old, chronically ill, debilitated, or mentally i m p a i r e d do n o t receive the same level of aggressive medical evaluation a n d t r e a t m e n t as do the young, acutely ill, a n d mentally normal. We do not discuss this reality or debate its ethics." Psychiatric hospitals make medical decisions a b o u t gravely ill patients based o n practical considerations rather t h a n well t h o u g h t - o u t principles.

CASE S T U D I E S Case 1 : Mr. A. was a 62-year-old chronically schizophrenic man who had lived most of his adult life in a mental hospital. As he aged, he developed multiple medical problems, including hypertension, heart disease, and recurrent pneumonia. On several occasions, he had been transferred to a nearby general hospital for treatment of acute medical problems. The staff of the acute care hospital developed an increasing reluctance to admit Mr. A., and when they did admit him, they often discharged him when he was still medically unstable..At the same time, the psychiatric hospital staff became less inclined to attempt transfer. The patient had a cardiac arrest and died at the psychiatric hospital during a bout of pneumonia. As was typical for this hospital, resuscitation consisted only of artificial ventilation and closed chest massage. There was no attempt to begin an intravenous line, intubate, defibrillate, or use any of the techniques for advanced life support available in the general medical hospital. Cr,tse 2: Mrs. B. was 77, and had been admitted to a state mental hospital with a diagnosis of advanced Alzheimer's disease. She became progressively more debilitated and eventually totally bedridden. She stopped communicating, and refused to eat. She received nutrition through a feeding tube, and was turned frequently to prevent decubitus ulcers. Because of her severely debilitated condition, no attempt was ever made to transfer her to a medical hospital. She developed numerous infectious complications, including pneumonia, urinary tract infection, and generalized bacteremia from infected ulcers. These episodes were neither given the vigorous workup available in a general medical hospital, nor were they ignored. Instead, a moderate level of care was tacitly agreed upon and carried out. Since there was no formal pol-

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icy that allowed the withholding of resuscitation, half-hearted efforts to apply CPR were made at the time of her death. Case 3: Mr. C., 56 years old and a chronic schizophrenic, had been hospitalized for two years. During a workup for a productive cough, he was discovered to have carcinoma of the lung. The patient was cooperative with the recommended radiotherapy and chemotherapy treatments. However, he was never able to discuss the fact that his illness was potentially fatal. Eight months after the initial diagnosis, the patient developed rapidly progressive liver metastasis. A medical consultant felt the patient had less than two weeks to live. It was clear that resuscitation was not appropriate, but the staff had neither experience in discussing such matters with a psychotic patient nor a written policy to rely upon. Although they felt that the patient would have been best off dying in familiar surroundings, they were grateful when the consulting oncologist agreed to admit him to the nearby acute medical facility for his terminal care. He died among strangers six days after his transfer. These cases illustrate the failure of psychiatric hospitals to make decisions about how aggressive medical care should be. In the case of Mr. A., the psychiatric hospital staff met increasing resistance on the part of the general hospital to care for him, and, in the absence of adequate medical resources of their own, they became less aggressive. T h e staffcaring for Mrs. B. were ambivalent about the degree of care she warranted, and attempted to avoid neglect on the one hand and aggressive intervention on the other. I n Mr. C.'s case, the staff who knew him well were more than willing to take care of him d u r i n g his terminal illness, but felt the lack of explicit policies to withhold heroic treatment made that impossible. Without clearcut policies, staff are uncertain about whether their decisions are medically or ethically correct.

GENERAL PRINCIPLES P E R T A I N I N G T O DNR In discussing any life sustaining treatment, the issue is one of weighing the rights of the individual to refuse such treatment against the interest of the state in the preservation of life, the protection of the interests of innocent third parties, the prevention of suicide, and the maintenance of the ethical integrity of the medical profession. 6 T h e President's Commission has outlined several important general principles that pertain to resuscitation: 1.

2.

3. 4.

Health care professionals serve patients best by maintaining a presumption in favor of sustaining life. Health care institutions should initiate resuscitation in the absence of a specific order to withhold it. When a patient is competent, his autonomy should be respected, including the right to refuse lifesaving treatment. (A series of legal decisions have upheld this opinion based on common-law concepts of autonomy and the constitutional right to privacy). 7 When a patient is not competent to make his own decision, a surrogate, ordinarily a family member, should be named to make decisions for the patient. Decisions should be made using the following standards: (a) T h e first attempt should be to replicate the decisions the patient would have made if

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still competent, often called "substituted judgment." (b) When lack o f evidence precludes this, decisions by surrogates should seek to protect the patient's "best interests." It is important to examine how each of these principles applies to the psychiatric hospital.

T H E ROLE OF T H E H E A L T H CARE PROFESSIONAL AND T H E I N S T I T U T I O N Implementing a DNR policy is more problematic in a psychiatric hospital than in a general medical hospital, because the psychiatric institution plays a complex role in the lives of chronically ill patients. A general medical hospital has only one clearly defined purpose. A psychiatric hospital has many, and its function in any particular case is often difficult to determine. For some patients the psychiatric hospital has been the only home for many years, and when it comes to care for a dying patient, it is no longer functioning as a psychiatric facility. It is a substitute for a hospice, skilled nursing facility, chronic care medical hospital, or home care for the dying. To determine the role of the hospital and the DNR policy that should follow from it, we must decide what the medical capabilities of a psychiatric hospital are to be. The capacity to perform resuscitation is in fact limited in institutions that are not general medical hospitals. Most long-term psychiatric hospitals are not built to accommodate the rapid transfer of equipment and staff to the site of a resuscitation, and the staff are rarely adept at these procedures. If an institution is incapable of performing resuscitation, does it in effect issue a DNR order when it fails to transfer a critically ill patient to a general medical hospital?

THE COMPETENT PATIENT A patient is competent to consent to a DNR order when he or she is able to understand the nature and severity o f his illness and the risks and benefits of heroic interventions ~. T h e patient must also be able to indicate a preference for one course of action over another. By definition patients in psychiatric hospitals have impaired mental functioning, so the issue of competence could be raised in almost every case. In spite o f their impaired functioning, psychiatric patients do regularly participate in decisions concerning their own treatment. Therefore, it is in keeping with the usual practice to inform the patient and allow him or her to accept or refuse resuscitation. Unfortunately, discussing a matter so traumatic with a severely ill psychiatric patient presents immense clinical problems. We have almost no information about how well these patients can tolerate such discussions. The President's Commission suggests that patients who would be seriously emotionally damaged by a detailed discussion o f resuscitation might be approached obliquely, with a general theoretical discussion of the patient's preferences concerning extraordinary measures. But a vague conversation with a mentally impaired patient will leave many questions in

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the mind o f the physician requesting the information. Moreover, even a general discussion may be frightening enough to provoke an anxiety that renders the patient incompetent to make a rational decision ~. Patients who have trouble acknowledging that they are ill, or who tend to refuse treatment o f any kind, or who are suicidal are a m o n g those who present the greatest challenge. Just as troubling, when the patient agrees with the physician's j u d g m e n t , there may be a tendency to gloss over the issue o f whether the patient's expressed opinion is truly competent.

THE INCOMPETENT PATIENT When the patient is d e t e r m i n e d to be incompetent, two questions arise: Who should decide for the patient, and what should be the standards used in making the decision?

1. The Surrogate Decision-Maker T h e choice o f a surrogate decision-maker for a chronically hospitalized mentally ill patient presents some special problems. In a general medical hospital, the decision to write a DNR o r d e r is usually arrived at by mutual agreement between hospital staff and surrogate decision-makers. Physicians present the medical facts and prognosis to the s u r r o g a t e - - u s u a l l y the spouse, adult child, parent, or legal guardian o f the p a t i e n t - - a n d a plan is agreed upon. When there is disagreement or confusion about the p r o p e r course of action, the involved parties may take the matter to the courts. In a long-stay psychiatric hospital, the staff, expert mainly in psychiatry, are not necessarily in the best position to advise surrogate decision-makers about the medical facts o f the patient's condition. F u r t h e r m o r e , it may be difficult to find a surrogate. Many longterm mental patients do not have spouses or children, and o t h e r family connections may have become very distant. T h e staff o f the institution may be closer to the patient than anyone in his or her own family. So a group of people who are neither medical experts nor family members must take on something o f each role for the chronic mental patient. Does this mean that: the staff of a psychiatric hospital should have a special role in making DNR decisions for incompetent patients? I n certain cases, courts of law have involved themselves as surrogate decision makers. For example, in deciding In the Matter of John Storar ~, the New York State Court o f Appeals o r d e r e d that blood transfusions be continued over the objections o f the patient's devoted mother, who felt that his suffering would outweigh any benefits to be gained from the treatment. T h e court maintained that Mr. Storar, a 52-year-old profoundly r e t a r d e d man with terminal metastatic bladder cancer, could be restored to his f o r m e r state o f functioning for a time by means of a treatment that was not, in the court's view, excessively painful. But the Court emphasized that it would not routinely become involved in deciding these matters. In a Massachusetts decision, Superintendent of Belchertown State School v. Saikewicz6, the Court considered the case o f a 67-year-old profoundly r e t a r d e d m a n who lived in a state institution. Mr. Saikewicz suffered from acute myeloblastic mono-

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cytic leukenfia. His guardian decided to withhold treatment, a decision with which the attending physicians agreed. While acknowledging that most competent people would elect to u n d e r g o treatment u n d e r these circumstances, the Court held that the discomfort of the treatment for a man who had no u n d e r s t a n d i n g of its purpose, and no ability to cooperate with it, would outweigh the benefits, given the generally bleak prognosis o f this disease. In this case, although it agreed with the g u a r d i a n and the physicians, the Court emphasized that such decisions must be made by the courts. Annas'" has stated that the Court took this view because the issue in Saikewicz was not one of medical prognosis, but a legal question of ''substituted j u d g m e n t " or "best interests," which are matters for the Court to decide. While neither the Saikewicz nor Storar case specifically concerns resuscitation, they each formulate i m p o r t a n t principles about how decisions are to be made for the mentally incompetent. T h e two cases imply different roles for the court and offer insights into how the judicial system participates in clinical matters. It becomes clear that the emphasis on the role of the judiciary varies from court to court, case to case, and state to state. Most clinicians lack the legal background to be certain how the decisions of the courts apply to any particular case. Moreover, many public mental hospitals have limited legal resources. Psychiatric hospitals are far from p r e p a r e d to d e t e r m i n e for themselves how to make adequate decisions in these matters,

2. The Standard of Decision-Making (A)

(B)

Substituted J u d g m e n t Patients often communicate poorly or have been incompetent for a long time. T h e i r families are often not available or have long been out of touch. This makes it very difficult to d e t e r m i n e what decisions the chronically ill psychiatric patient would have made if competent. For many patients the "best interests" criteria would have to be applied. Best Interests T h e best interests of the patient do not d e p e n d only on whether it is likely that a given treatment will be beneficial. A person who is unable to understand o r cooperate may not be able to tolerate a painful treatment that a competent person could accept. This was the situation that confronted the Saikewicz court.

It is important to offer psychiatric patients the same level of medical care as would be provided to any other citizen. This should only be modified for the same reasons as for any o t h e r p a t i e n t - - w h e n terminal illness dictates a lesser level of medical intervention. A I985 decision by the New Jersey S u p r e m e Court drew attention to this issue ~a-~. T h e case involved an 84-year-old mentally incompetent terminally ill nursing home patient who was receiving nutrients t h r o u g h a feeding tube. She had no cognitive abilities and was not expected to live more than one year. T h e Court held that removing a feeding tube was not different in principle from removing the respirator in the case o f Karen Ann Quinlan, a decision the Court h a d r e n d e r e d nine years before. But at the same time, the State Public Advocate present at the p r o c e e d i n g sought, and received, safeguards for severely disabled

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and retarded patients in state hospitals. Justice Sidney M. Schreiber stated, "We do not believe it would be appropriate for a court to designate a person with authority to determine that someone else's life is not worth living simply because, to that person, the patient's 'quality of life' or value to society seems negligible." The judge felt it was in Ms. Conroy's best interest to be allowed to die without further intervention from a syndrome that would soon claim her life in any case. Judge Schreiber was careful to connect his decision to the prognosis of the patient's medical illness, and not to her limited ability to function. It is clear that psychiatric patients are to be protected from prejudices that would compromise their right to adequate medical care.

CONCLUSION One of the most important recent developments in medical ethics is the recognition that not all patients should receive aggressive medical care in the final stages of life. A general medical hospital can withhold resuscitation and still provide other forms of heroic life-sustaining treatments such as vasopressors or ventilation ~a'~. Psychiatric hospitals cannot effectively provide any of these aggressive medical treatments, although they are sometimes in the best position to offer humane terminal care to long-term psychiatric patients. T h e following principles might be a starting point for further consideration o f the issue. 1.

2.

3.

Psychiatric hospitals should have the capacity to write orders that allow for the withholding of heroic life-sustaining treatment. Because psychiatric hospitals cannot provide any such interventions, orders should only be written when it is appropriate to withhold both resuscitation and other forms o f heroic intervention. Patients with life-threatening illnesses for whom it is not appropriate to write orders to withhold heroic measures should be transferred to a general medical hospital. Psychiatric hospitals need guidelines for the assessment of competence, the role of surrogates, the standards of decision making, and the impact of legal decisions as they specifically pertain to a psychiatric setting.

Many psychiatric hospitals have not defined the nature of their medical responsibilities. Patients often get inferior medical care not by design, but because of a combination of prejudices, limited resources, and tacit agreements about certain kinds of patients among the staffs of both psychiatric and general medical hospitals. The need to develop DNR policies presents an opportunity to develop more thoughtftfl approaches to the medical care of these patients. When a patient in a state psychiatric hospital becomes terminally ill, a decision needs to be reached: either the patient will be treated aggressively in a general medical hospital or he will receive what amounts to hospice care in the psychiatric hospital. By making these decisions at the outset, state hospitals could do a competent job

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of managing

t e r m i n a l l y ill p a t i e n t s . C o m t o r t c a r e a n d p a i n r e l i e f a r e well w i t h i n t h e

abilities o f a s t a t e m e n t a l h o s p i t a l ; i n t e n s i v e m e d i c a l c a r e is n o t . F o r t h e p r o t e c t i o n o f s t a f f a n d p a t i e n t s , it is as e s s e n t i a l to d e v e l o p D N R p o l i cies in p s y c h i a t r i c i n s t i t u t i o n s as it is in a n y h e a l t h c a r e s e t t i n g , S u c h p o l i c i e s c o u l d s e r v e as a m o d e l f o r o t h e r e x t e n d e d c a r e facilities. P s y c h i a t r i s t s h a v e a n o p p o r t u n i t y to t a k e a l e a d i n g r o l e in r e a c h i n g t h e s e critical d e c i s i o n s .

REFERENCES 1. New York State Office of Mental Health Inpatient Census Report 201, Albany, New York (1983, 1984). 2. New York State Otlice of Mental Health, DMHIS Form 635/636, Albany, New York (1983, 1984). 3. Bedetl SE, Delbanco TL, Cook EF, et al.: Survival After Cardiopulmonary Resuscitation in the Hospital. New Englar~dJournal of Medicine 309: 569-575, 1983. 4. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research: Deciding to Forego Li~e--Sustaining Treatment: A Report on the Ethical, Medical and Legal Issues in Treatment Decisions, U,S. Govermnent Printing Office, Washington, D.C., 1983. 5. Hilfiker F: Allowing the Debilitated m Die. New England Journal of Medidne 308: 716-719, t983. 6. Superintendent of Belchertown State School v. Saikewicz, 1977 Mass. Adv. Sh. 246I, 370 N.E. 2d. 417, I977. 7. Mariner WK: Decision Making in the Care of Terminally Ill Incompetent Persons: Concerns About the Role of the Courts,J. Am. Get,at. Soc. 32(10): 739-746, t984. 8. Applebaum PS, Roth LH: Clinical Issues in the Assessment of Competency. Am. J. Psychiatry: 138: 1462-1467, 1981. 9. Matter ofStorar: Eichner v. Dillon. 52 N.Y. 2d 363,438 N. Y. S. 2d 266, I981. 10. Annas GJ: Refusing Ti~atment for Incompetent Patients. New York State Journal of Medicine 80(5): 816-821, 1980. 11. Sullivan R: "Right to Die" Rules in Terminal Cases Widened in Jersey. New York Times, Friday, January 18, 1985, p. A1, B2, 12. Kleiman D: Death and the Court, New York Times, January 19, 1985, p. B 1-2. 13. Youngner SJ, Lewandowski W, McClish DK, et al. 'Do Not Resuscitate' Orders--Incidence and Implication in a Medical Intensive-Care Unit, Journal oft he American Medical Association, 253: 54-57, 1985. 14. Veatch RM: Deciding Against Resuscitation: Encouraging Signs and Potential Dangers.Journal of the American Medical Association, 253: 77.--78, 1985.