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The goals and challenges of palliative care: Thoughts of a deathwatcher
382
Guest
Joumal of Pain and SVmptomManagement
Vol. 5 No. 6 December 1990
Column
The Goals and Challenges of Palliative Care: Thoughts of a Deathwatcher Frank J. Brescia, MD C&q H~.+al, Bronx, New York
The modern concepts of palliative and hospice care were born because of unhappine~ and frust~tion with the ability of physicians and the health care system to deliver effective and compassionate treatment to the dying. During the past SO years in industrialized countries, medicine in- focused on curative intervention while often negating Ihe basic needs of terminal individuals. Physicians, highly trained to perform sophisticated procedures, could no longer be trusted to relieve pain and other difficult symp toms of disease. At times, tragically, the inability to recognize a ~ntinuum of care from curative inte~ention to good symptom control enhances patients’ suffering and makes death more difficult. The eiinician has the obligation to scrutinize a terminal Dennis. Diagnostic and treatment skiiis are as im~rtant to the ~ysi~ian at the end of life as during earlier periods of a patient’s illness, The real difficulty in defining a terminal status is deciding which patients are no longer treatable, 2pndthen choosing which specific therapy is no longer part of necessary care. When is it app~pr~at~ to wi~hold this or that medication or blood transfusion from a dying patient? Thinking about our goals for a particular patient becomes an important balancing act, in which the physician must examine the person’s ~~ of life ~~~u~~e and objective) and qtu@v of life (nonmeasurable and highly subjec-
A&&Sm$wint?vquest.s to: Frank J. Btx+scia, MD, CalYary HosPit& 1740 East&esterRoad, Bronx, NY 104?51. 1990 Fddhhed by F&vier, New York, New York
tive). For example, how aggressively should the physician pursue diagnostic studies and antitumor therapy in asymptomatic terminal patients? Certainly, responsive tumors, especially in research settings, may justify the morbidity of such treatment if the patient is willing to bear acceptable toxicity. Both medicine and society fail miserably unless the difference between what can be done for a patient and what ought to be done for a patient is clearly understood. Although the medical and clinical decisions to provide due care are often profoundly different than issues of caring (to touch, to comfort, to listen, to hold, to simply care!), the two concerns, rightly, should be interwoven like a fine tapestry in every clinical story. The measure of good care rests certainly in finding a cure for lness, if possible, or proIonging life, if this is feasible; however, the criteria for good care must include provisions for fighting tutacceptable symptoms and needless suffering. In my opinion, this is truly the meaning of medicine’s work and patient nonabandonment, the essence of palliative care. The following are basic objectives to consider in this process: J..The patient must be kept as symptom free as possible. Every effort should be made to ascertain whether or not the patient is uncomfortable, even when he/she does not or cannot express discomfort. Comfort may include appropriate grooming, which can make the patient feel dignified and presentable for procedures and examinations. 2. Ail that can be done medically that is appropriate for the patient must be considered,
@ U.S. Cancer Pain RelieECommittee,
0885-3924l90/$3.50
Vol. 5 No. 6 December 1990
Goals ofPa&ative Care
and unnecessary procedures, tests, and therapy that create anxiety must be avoided, despite medical acceptability, reimbursement, or research reasons. The status and condition of the patient should be discussed with other physicians and consultants, so that all management sug~sdons are given serious conside~tion~ 3. Care must be continuous, and both the patient and family must not be made to feel that there is any break in this continuity. This care plan must be documented so that others will be able to continue this management if and when necessary, Upon discharge, all those involved should have clear and correct understanding of what the patient’s continuing care will be, and who will be responsible for supervision of that care. 4. Patients must be afforded every opportunity to discuss their illness. In those situations that require patients’ decisions, patients should be informed of their diagnosis, treatment, prog nosis, alternatives, and even costs in terms that they can understand. If the patient, for medical or other reasons, is not informed, the closest responsible person must receive this information and this must be documented. 5. The privacy of the patient is paramount. The confidentiality of all conversations, and records pe~aining to the care of a patient must be respected, except as otherwise provided by law. Confidences must be kept. 6. Patients must have their spiritual, emotional, and psychological needs met. Staff should strive to accept the patients’ defenses and not react to these in a way that patients would view as rejection. 7. Diversional activity that is appropriate, enjoyable, and available should be provided to patients. These activities should exist to meet the patient’s t.eeds and not those of the staff. 8. Food is more than nutrition; it is also a symbol of life and control. It should be presented in an attractive manner, and patients should be able to choose as best they can the kind and the quantity of food and when it is eaten. 8. The family and loved ones of the patient must be respected. Communication, control, comfort, and compassion must be continuously available to ease their suffering.
Meeting all of these basic objectives is only the first step in addressing the numerous challenges
383
facing palliative medicine. The issues, quesand priorities vary, depending on the unique medical, ethnic, cultural, financial, and religious characteristics of the patient and the health care setting. The foilowing is not an exclusive list of problems, nor is it presented in any specific order of importance, but these are some of the important issues that must be considered if palliative medicine is to meet these challenges: iiOn%
I. Where should patients die? Should the patient be hospitalize or die at home? Some hospice programs in the United States have established home care programs that have reversed the recent trend and allowed nearly three quarters of their patients to die at home. There are obvious advantages and di~dvan~ges to dying at home. In New York City, where elderly live separated from other family, the socioeconomic setting often makes it impossible to keep the patient at home. At times, the family caregivers do not appreciate the burden of such care and feel resentful and abandons by the physician and health care team. Yet, if resources are present, many patients can die peacefully in their own beds, in familiar surroundings with some control over their last days. The real hope for palliative medicine is to be flexible, yet realistic for each patient. Hospitals must take on the burden of change to accommodate the special needs of the dying. 2. What is proper medical treatment for the dying? The goals of therapy must be rational and clearly unde~st~d, and should be ~oInmunicated to both patient and family. Plans of care need to,be discussed by the health care team to resolve any confusion or potential conflicts. It is important to never promise more than can be realistically delivered and caregivers must all agree on the conditions of these a~eements. Pain, for exampie, may not be able to be totu&~ relieved, but the patient and family must understand that every effort will be made to make it tolerable. Specific information about responsibility and choices dying emergencies need to be anticipated so that uncertainty and panic are avoided. Each program must demand competent clinicians to treat these patients. Compassion is necessary, but is not sufficient to manage the problems these patients present. 3, Who are the difficult patients? Patient prrr” files need to be studied. to determine the need of specific groups. The value of the interdiscipli-
384
nary team is truly found here. Some particular patients at risk include children with cancer, adolescent dying patients, patients living alone, paden& with rapidly progressive illness, patients who have repeated emergencies at home, padents with intractable Pain, suicidal patients, severely agitated patients at home, and patients with known drug abuse and cancer. 4. What are the legal and ethical questions in palkitive care? These area3 of interest will ‘vary widely because of differing views of basic principles. Attitudes about truth telling regarding a patient’s ~a~~ have changed in the United States during the past twenty years. The desire to provide the patient with self~e~erminatiun and autonomy may clash with the physician’s conception of doing “good” and acting in the ~tient’s best iute~st. Should we alwaysrespect a patient’s living will? Hospice care is neither euthanasia nor assisted suicide, yet those providing this care must face these issues as they begin to be discussed as reasonable and morally just&l in certain areas of the world. As cost containment policies become more prominent, decisions regarding criteria co limit treatment must be discussed. 5. Should terminal patients use the scarce resources of well trained people and limited money? Financial concerns, both for the individual patient and for public policy, must be faced. Good palliative medicine is not “cheap” because it demands a variety of competent disciplines, Readable questioyIs need to be addressed so that scarce resources are diitributed wisely. Should bereavement services be remuneeds for the family since the patient who had the insurance coverage is no longer alive? Should we ignore cost and do everything to keepa patient alive because the patient or family demand aggressive care? Should age be established as criteria for non~~atment if a terminal status is documented? The potential raised hy an interaction of a right to “‘death with d@ity” and “cost contammenc” is the major threat both to the traditional ethos of medicine ami the well ~~b~sh~ ~tier~t~~tor relationship. This must be examined. 6. How do we attract and maintain staff? Competent staff is always hard to attract in hos@ce work. How do we educate younger physicians iu this important work and allow them the gratification perceived in other areas of medicine? What an2 the best methods of support to prevent stress and “burnout?” Can we attract
Brescia
Journal
ofPain
and SylaptomManagement
good research people who also have the necessary compassion and clinical skills? 7. Is research feasible in hospice? Clinical research is important in all medicine. Patients with advanced disease, however, are vulnerable and must be protected. Some clinical promcots may not be appropriate. Informed consent must be done in a com~~ionate manner. The value and safety of the research work must he established beyond doubt by those responsible. Symptom control research is ideal, provided that patients understand the studies and any further p~blems are minimal. Studies that are nontherapeutic to patients, for example, drawing of blood levels of drugs, must be scrutinized carefully. 8. How do we measure the quality of our care? This is difficult when rnorbi~ty and mortality of illness is expected as the natural course of events. Could morbidity or death have been diminished or prevented? Was the patient an appropriate hospice patient? In our own program, we have seen patients referred for terminal care with a misdiagnosis of cancer, who were subsequently shown to have tuberculosis. At dines, patients have not had state-of-the-art oncological care-morphine for pain rather than ~diation for responsive tumors. Quality assurance demands ccmstant review and rereview of both instirutional and patient objectives, criteria of standards to he met, and d~umen~ation of staff performance. Because patients are so ill and close to death, the quality of care must also consider the potential for inappropriate intervention. Perhaps the surgery to insert a feeding tube was not indicated if the patient died 24 hr later. 9. How can we avoid isolating palliative medicine as another speciality, and instead integrate our goals, principles, and accomplishments in all of medicine? The grass roots frustration that initially produced hospice care should not perpetuate this narrow road. A new monopoly of care is the worst that can happen for our padents. Is there a rational plan for medical care once the ravages of disease have gone beyond the ability to cure? What is needed now is clear thinking about the basis and goals of palliative medicine. The failm e to provide proper care is intolerable, since it is, in reality, the true abandonment of the ideals that guide the profession of medicine.
Guest
Joumal of Pain and SVmptomManagement
Vol. 5 No. 6 December 1990
Column
The Goals and Challenges of Palliative Care: Thoughts of a Deathwatcher Frank J. Brescia, MD C&q H~.+al, Bronx, New York
The modern concepts of palliative and hospice care were born because of unhappine~ and frust~tion with the ability of physicians and the health care system to deliver effective and compassionate treatment to the dying. During the past SO years in industrialized countries, medicine in- focused on curative intervention while often negating Ihe basic needs of terminal individuals. Physicians, highly trained to perform sophisticated procedures, could no longer be trusted to relieve pain and other difficult symp toms of disease. At times, tragically, the inability to recognize a ~ntinuum of care from curative inte~ention to good symptom control enhances patients’ suffering and makes death more difficult. The eiinician has the obligation to scrutinize a terminal Dennis. Diagnostic and treatment skiiis are as im~rtant to the ~ysi~ian at the end of life as during earlier periods of a patient’s illness, The real difficulty in defining a terminal status is deciding which patients are no longer treatable, 2pndthen choosing which specific therapy is no longer part of necessary care. When is it app~pr~at~ to wi~hold this or that medication or blood transfusion from a dying patient? Thinking about our goals for a particular patient becomes an important balancing act, in which the physician must examine the person’s ~~ of life ~~~u~~e and objective) and qtu@v of life (nonmeasurable and highly subjec-
A&&Sm$wint?vquest.s to: Frank J. Btx+scia, MD, CalYary HosPit& 1740 East&esterRoad, Bronx, NY 104?51. 1990 Fddhhed by F&vier, New York, New York
tive). For example, how aggressively should the physician pursue diagnostic studies and antitumor therapy in asymptomatic terminal patients? Certainly, responsive tumors, especially in research settings, may justify the morbidity of such treatment if the patient is willing to bear acceptable toxicity. Both medicine and society fail miserably unless the difference between what can be done for a patient and what ought to be done for a patient is clearly understood. Although the medical and clinical decisions to provide due care are often profoundly different than issues of caring (to touch, to comfort, to listen, to hold, to simply care!), the two concerns, rightly, should be interwoven like a fine tapestry in every clinical story. The measure of good care rests certainly in finding a cure for lness, if possible, or proIonging life, if this is feasible; however, the criteria for good care must include provisions for fighting tutacceptable symptoms and needless suffering. In my opinion, this is truly the meaning of medicine’s work and patient nonabandonment, the essence of palliative care. The following are basic objectives to consider in this process: J..The patient must be kept as symptom free as possible. Every effort should be made to ascertain whether or not the patient is uncomfortable, even when he/she does not or cannot express discomfort. Comfort may include appropriate grooming, which can make the patient feel dignified and presentable for procedures and examinations. 2. Ail that can be done medically that is appropriate for the patient must be considered,
@ U.S. Cancer Pain RelieECommittee,
0885-3924l90/$3.50
Vol. 5 No. 6 December 1990
Goals ofPa&ative Care
and unnecessary procedures, tests, and therapy that create anxiety must be avoided, despite medical acceptability, reimbursement, or research reasons. The status and condition of the patient should be discussed with other physicians and consultants, so that all management sug~sdons are given serious conside~tion~ 3. Care must be continuous, and both the patient and family must not be made to feel that there is any break in this continuity. This care plan must be documented so that others will be able to continue this management if and when necessary, Upon discharge, all those involved should have clear and correct understanding of what the patient’s continuing care will be, and who will be responsible for supervision of that care. 4. Patients must be afforded every opportunity to discuss their illness. In those situations that require patients’ decisions, patients should be informed of their diagnosis, treatment, prog nosis, alternatives, and even costs in terms that they can understand. If the patient, for medical or other reasons, is not informed, the closest responsible person must receive this information and this must be documented. 5. The privacy of the patient is paramount. The confidentiality of all conversations, and records pe~aining to the care of a patient must be respected, except as otherwise provided by law. Confidences must be kept. 6. Patients must have their spiritual, emotional, and psychological needs met. Staff should strive to accept the patients’ defenses and not react to these in a way that patients would view as rejection. 7. Diversional activity that is appropriate, enjoyable, and available should be provided to patients. These activities should exist to meet the patient’s t.eeds and not those of the staff. 8. Food is more than nutrition; it is also a symbol of life and control. It should be presented in an attractive manner, and patients should be able to choose as best they can the kind and the quantity of food and when it is eaten. 8. The family and loved ones of the patient must be respected. Communication, control, comfort, and compassion must be continuously available to ease their suffering.
Meeting all of these basic objectives is only the first step in addressing the numerous challenges
383
facing palliative medicine. The issues, quesand priorities vary, depending on the unique medical, ethnic, cultural, financial, and religious characteristics of the patient and the health care setting. The foilowing is not an exclusive list of problems, nor is it presented in any specific order of importance, but these are some of the important issues that must be considered if palliative medicine is to meet these challenges: iiOn%
I. Where should patients die? Should the patient be hospitalize or die at home? Some hospice programs in the United States have established home care programs that have reversed the recent trend and allowed nearly three quarters of their patients to die at home. There are obvious advantages and di~dvan~ges to dying at home. In New York City, where elderly live separated from other family, the socioeconomic setting often makes it impossible to keep the patient at home. At times, the family caregivers do not appreciate the burden of such care and feel resentful and abandons by the physician and health care team. Yet, if resources are present, many patients can die peacefully in their own beds, in familiar surroundings with some control over their last days. The real hope for palliative medicine is to be flexible, yet realistic for each patient. Hospitals must take on the burden of change to accommodate the special needs of the dying. 2. What is proper medical treatment for the dying? The goals of therapy must be rational and clearly unde~st~d, and should be ~oInmunicated to both patient and family. Plans of care need to,be discussed by the health care team to resolve any confusion or potential conflicts. It is important to never promise more than can be realistically delivered and caregivers must all agree on the conditions of these a~eements. Pain, for exampie, may not be able to be totu&~ relieved, but the patient and family must understand that every effort will be made to make it tolerable. Specific information about responsibility and choices dying emergencies need to be anticipated so that uncertainty and panic are avoided. Each program must demand competent clinicians to treat these patients. Compassion is necessary, but is not sufficient to manage the problems these patients present. 3, Who are the difficult patients? Patient prrr” files need to be studied. to determine the need of specific groups. The value of the interdiscipli-
384
nary team is truly found here. Some particular patients at risk include children with cancer, adolescent dying patients, patients living alone, paden& with rapidly progressive illness, patients who have repeated emergencies at home, padents with intractable Pain, suicidal patients, severely agitated patients at home, and patients with known drug abuse and cancer. 4. What are the legal and ethical questions in palkitive care? These area3 of interest will ‘vary widely because of differing views of basic principles. Attitudes about truth telling regarding a patient’s ~a~~ have changed in the United States during the past twenty years. The desire to provide the patient with self~e~erminatiun and autonomy may clash with the physician’s conception of doing “good” and acting in the ~tient’s best iute~st. Should we alwaysrespect a patient’s living will? Hospice care is neither euthanasia nor assisted suicide, yet those providing this care must face these issues as they begin to be discussed as reasonable and morally just&l in certain areas of the world. As cost containment policies become more prominent, decisions regarding criteria co limit treatment must be discussed. 5. Should terminal patients use the scarce resources of well trained people and limited money? Financial concerns, both for the individual patient and for public policy, must be faced. Good palliative medicine is not “cheap” because it demands a variety of competent disciplines, Readable questioyIs need to be addressed so that scarce resources are diitributed wisely. Should bereavement services be remuneeds for the family since the patient who had the insurance coverage is no longer alive? Should we ignore cost and do everything to keepa patient alive because the patient or family demand aggressive care? Should age be established as criteria for non~~atment if a terminal status is documented? The potential raised hy an interaction of a right to “‘death with d@ity” and “cost contammenc” is the major threat both to the traditional ethos of medicine ami the well ~~b~sh~ ~tier~t~~tor relationship. This must be examined. 6. How do we attract and maintain staff? Competent staff is always hard to attract in hos@ce work. How do we educate younger physicians iu this important work and allow them the gratification perceived in other areas of medicine? What an2 the best methods of support to prevent stress and “burnout?” Can we attract
Brescia
Journal
ofPain
and SylaptomManagement
good research people who also have the necessary compassion and clinical skills? 7. Is research feasible in hospice? Clinical research is important in all medicine. Patients with advanced disease, however, are vulnerable and must be protected. Some clinical promcots may not be appropriate. Informed consent must be done in a com~~ionate manner. The value and safety of the research work must he established beyond doubt by those responsible. Symptom control research is ideal, provided that patients understand the studies and any further p~blems are minimal. Studies that are nontherapeutic to patients, for example, drawing of blood levels of drugs, must be scrutinized carefully. 8. How do we measure the quality of our care? This is difficult when rnorbi~ty and mortality of illness is expected as the natural course of events. Could morbidity or death have been diminished or prevented? Was the patient an appropriate hospice patient? In our own program, we have seen patients referred for terminal care with a misdiagnosis of cancer, who were subsequently shown to have tuberculosis. At dines, patients have not had state-of-the-art oncological care-morphine for pain rather than ~diation for responsive tumors. Quality assurance demands ccmstant review and rereview of both instirutional and patient objectives, criteria of standards to he met, and d~umen~ation of staff performance. Because patients are so ill and close to death, the quality of care must also consider the potential for inappropriate intervention. Perhaps the surgery to insert a feeding tube was not indicated if the patient died 24 hr later. 9. How can we avoid isolating palliative medicine as another speciality, and instead integrate our goals, principles, and accomplishments in all of medicine? The grass roots frustration that initially produced hospice care should not perpetuate this narrow road. A new monopoly of care is the worst that can happen for our padents. Is there a rational plan for medical care once the ravages of disease have gone beyond the ability to cure? What is needed now is clear thinking about the basis and goals of palliative medicine. The failm e to provide proper care is intolerable, since it is, in reality, the true abandonment of the ideals that guide the profession of medicine.