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Ethics and pain management: Respecting patient wishes
160
Vol. 9 No. 3 Aplill994
Journal of Pain and Symptom Management
Ethics and Pain Management: Respecting Patient Wishes Joanna
M. Cain, MD, and Bernard J. Hammes,
PhD
University of Wwhington Me&al Center Department of Obstetricsand Gyneco.?o~(J M. C.), Seattle, Washington; and Lutheran Hospital-La Crosse (BJ H.), La Crosse, Wwconsin
Abstrcrct The fearofpain is common among cancer patients. The management of cancer pain can raise troubling ethical issuesfor medicine and society. Medical caregivers have an ethical duty to @vide therapy that benefits patients by achieving one or more goals of medicine at all points. Pain and symptom relief may be the only achievable goat when curative therapy has failed. Relief of pain can restore &ckion-making capacity and enhance the patient’s tight to self&termination. The underpinning ethical jninciples and extensions of these #ninci$es in the medical context of pain control with varying medicai goals in cam care, including dying patients, is ex$ored, J Pain 3ymptom Manage 1994;9:16&165.
Ethics, cancer pain, terminal care, autonomy
Introduction The management of cancer pain raises troubling ethical issues for patients, families, health-care providers, and society. These issues revolve around moral rights and responsibilities, not only of patients, but also the broader group of individual caregivers, government, medical insurers, medical schools, licensing boards, and administrators involved in health care. Many of these issues have been raised in recently developed cancer pain guidelines: inadequacy of pain relief, adequate patient participation, respect for patient context, and
Address repn’nt requests to: Joanna M. Cain, MD, University of Washington Medical Center, Department of Obstetrics and Gynecology, Mailstop RH-20, Seattle, W4 98195, USA. Acc.@edfwpublication: July 13, 1993. This product is the work of a panel of experts and consumers convened by AHCPR pursuant to Federal Law. This product does not represent necessarily the position of the US Department of Health and Human Services. 0 U.S. Cancer Pain Relief Committee, 1994 Published by Elsevier, New York, New York
to and coverage for adequate pain care. While the clinical barriers are well defined, lack of appreciation for the ethical dimensions of pain management can create its own barrier. This report is intended to expand the discussion of those issues by emphasizing three basic ethical elements:
issues of access
1. The dying cancer patient should never be allowed to live out his or her life with unrelieved pain because of fear of side effects. patient wishes-autonomy2. Respecting must have a high ethical priority in cancer pain management. 3. The role of the health-care provider must be one of advocacy for both individual patients and those who will need care in the future.
Duty to Bene@ and Obligation to Treat Pain The goals of medicine listed by Jonsen and colleagues’ include relief of symptoms, pain,
08855924/94/$7.00
Vol. 9 No. 3 April 1994
Ethics and Pain Management
and suffering; improvement of functional status or maintenance of compromised status; e$ucation and counseling of patients regarding their condition and its prognosis; cure of disease; preventing untimely death; and promotion of health and prevention of disease. At any time during the management of a patient witb cancer, the ~~dica~ons for treatment must benefit the patient by achieving one or more of the goals of medicine. The clear limit to benefit is harm. Pain control relieves symptoms and may restore function. Other modalities of cancer therapy over the cotuse of a patient’s disease process may have a smaller margin between benefit and harm and may indeed become futile*-that is, they provide no, or very limited, benefits and meet no goal of medicine. Physicians are ethically not obligated to offer therapy that will not benefit patients.” In a terminal cancer patient, when the only therapies of benefit are symptom palliation and augmentation of function, pain control assumes an even greater ethical importance. Relieving pain and suffering becomes the major medical goaL In this context, the side effects of high opioid doses can create fears in the treating medical personnel about harming or even killing patients when increasing doses to alleviate pain. The duty to benefit through relief of pain is by itself adequate to support the use of increasing doses to alleviate pain, even if there might be life shortening and expected side effects. Those treating the patient clearly intend an adequate dose-and only that-to relieve pain. In doing so, they accept the potential sequelae. This concept has a long history in moral thought-and has been framed as the principle of double effect.” The principle of double effect delineates the clinical situation when an intended treatment may have inextricably linked deleterious side effects. To meet this ethical concept, the intent of treatment must be clearly focused on the good or beneficial (and medically appropriate) outcome. The treatment must be not morahy objectionable in and of itself. The ad~ninis~tion of medication is always a risk-versus-benefit calculation. When the patient’s death is imminent because of progression of primaty disease, an increased risk of earlier death counts little against the benefit of pain relief and painless
161
death. Given the fact that most of these patients have been receiving opioid analgesics for a signi~cant period of time, the feared shortening of life with side effects is not likely. The dying cancer patient should never be allowed to live out his/her life with unrelieved pain because of fear of side effects. The approp~ate, aggressive palliative sup port of a dying patient differs from the concept of physician-assisted death or euthanasia. The idea of unrelieved pain for which assisted death is the only alternative has been debated in many forums, including broad initiatives in Washington and California that incorporate assisted suicide. The intent of medical intervention in assisted suicide differs markedly from the intent of treatment when death is a secondary accepted risk. In assisted suicide, a morally objectionable means or intent (killing) is the treatment used to achieve a morally permissible end (pain relief). During the discussion over state initiatives, supporters revealed a telling fact: they were attracted to these measures because they feared spending their dying days in uncontrolled pain.%’ Fear of unacceptable pain formed a major component of requests to physicians for assisted deaths and is so important to patients with cancer that 69% reported they would consider committing suicide if their pain was not adequately treated.” The concern that the stimulus for legalizing assisted death comes from inadequate attention to pain and symptom management is also supported by research showing that 81% of physicians and nurses felt that “the most common form of ‘narcotic abuse’ in the care of the dying is the undertreatment of pain.“r” Health-care professionals’ obligations to life and the quality of remaining life argue for broad investment in physician and health-care development of expertise in pain control.
The ethical principle of autonomy’ l encompasses the critical importance of patients’ rights to self-determination regarding health care. A significant element of the care of cancer patients and their pain management is the high priority given to respecting patients’
162
Cain and Hammes
wishes from their own context. The kind of pain management and side effects that are acceptable to patients varies directly with their present and future goals, and their unique view of themselves and the world. Caregivers’ assumptions, without corroboration, of patient wishes, values, and educational needs often lead to rejection of helpful therapy or to acceptance of therapy with a heightened sense of loss of control over one’s destiny. This sense of control may already be beleaguered by the diagnosis and therapy of malignancy. Consider a 75-yr-old patient who is admitted with a large, fungating vulvar mass for which primary chemotherapy and radiation therapy is considered. The patient is ill-kempt, does not meet the staff’s eyes when questioned, and states she just “wants to die.” She has no appetite and has lost 20 pounds over 6 months. She wants pain medicine to “put her to sleep.” She is ambivalent about treatment. While autonomy is a deeply held ethical principle in medical ethics, respecting patient “wishes” involves far more than accepting the face value of a patient’s expression of wishes. This example illustrates an important element in assessing patient capacity to choose: the authenticity of an expressed wish. The overriding element of untreated depression creates a valid question about the ability of this patient to make choices about her care.. The recognition and treatment of depression can be considered as an effort to restore authentic autonomy, allowing the patient the ability to consider carefully, correlate, and communicate his/her wishes and goals. The prevalence of unrecognized depression in patients, particularly those expressing a desire to abandon all therapy and to die, is significant.12 Severe, unrelieved pain itself should be considered a major impingement on a patient’s ability to make choices regarding care and ethically obligates health-care workers to treat such pain on the basis of restoring autonomy as well as beneficence. The obligation of health caregivers to accurately identify patient wishes becomes more stringent when patients are unable to speak for themselves. Any surrogate decision maker should decide as the patient himself or herself would have wished, but information about what a patient would have wished may be limited.
Vol. 9 No. 3 April 1994
The passage of the Patient Self-Determination Act (PSDA)t3 is a clear message to health caregivers that the population wants a durable dialogue with caregivers about what medical interventions are useful to them. The PSDA requires hospitals receiving federal funds to ask patients whether they have advance directives and, if advance directives do not exist, information regarding them must be offered. One of the most clearly delineated of patents’ wishes is adequate attention to pain and symptom management in all phases of care particularly for dying patients.t4 It is reasonable, then, to treat pain in cancer patients who are unable to make choices or who have no surrogate decision makers because not only does it meet a beneficial goal of medicine or restore autonomy, but also is a reasonable assumption about a patient’s wishes for pain management. Advance directives can afford valuable information when choices must be made for patients with limited or no ability to speak for themselves.‘“J6 These generally include directives to physicians (or “living wills”), which may or may not be in a format acceptable in the particular state. Even if not in a proper format, these documents can give caregivers information about what the patient’s choices might have been. Also, durable powers of attorney for health care can identify a person whom the patient has chosen to make such choices. Both can provide health caregivers with significant information about what a particular patient would have wished in present circumstances. A number of investigators, including Strull and colleagues, t7 have demonstrated a desire to discuss such issues, including pain management, in approximately 60% of the patient population. Nonetheless, the number of patients actually discussing this with physicians is less than 8%. Clearly, the burden of introducing these issues-the opening of the door-is on physicians’ shoulders. Information that can be considered by patients, families, and their physicians at a time when impending crisis management is not looming large represents a greater respect for encouraging accurate expression of wishes and values. Whether in the outpatient or inpatient setting, the physician bears a significant moral burden of opening this discussion. These
Vol. 9 No. 3 A/nil I994
Ethics and Pain Management
represe~~t~ons of patient wishes must be carefully evaluated at sequential times, as they must meet the criteria of representing the patient’s choices given the current medical circumstances. Establishing early on in cancer therapy the patient’s goals relevant to mobility, level of awareness, and side effects of pain management will be very helpful when medical decisions may later need to be made by a surrogate decision maker. This basic discussion may be revisited as intensity of treatment or goals of therapy shift. No advance directive IS valid if the patient still has the capacity to make choices. Even if a patient has an advance directive refusing hydration, invasive procedures, and so on, a medical indica~on for these interventions requires that the patient with capacity participate in choices-even if the patient is terminal. Assumptions about pain management, nutrition, hydration, and other needs, should never be made on the basis of advance directive documents when contit~u~~~ dialogue with the patient is possible. Furthermore, surrogate decision makers, either as specified by state statutory law or by a durable power of attorney, should not blindly be accepted by caregivers as choosing in the patient’s best interest.‘s The patient may have clearly communicated a desire for palliative and maximal pain management that included moderate degrees of sedation. A family member or surrogate may have unfinished business with the patient or become anxious at the thought of losing a loved friend or relative, and demand as the patient’s surrogate that therapy be given or a painmanagement plan be altered. Although this person’s grief must be attended to by the patient’s caregivers, the patient’s decisions remain the guiding principle. The patient’s benefit and wishes regarding care remains the primary obligation of caregivers.
Another case may extend this illustration. A 35-y&d has progressive, untreatable cervical cancer. Her goal is to spend time with her children, ages 10 and 12 yr. She has severe pelvic pressure and pain but desires a clear sensorium to interact with her children. Mobil-
163
ity is not as important to her. T gathered from the patient directs her cancer pain-management alternatives. For the patient’s benefit and out of respect for her choices, optimal management of her refractory pain with preservation of cognitive function should be explored through all avenues. This might also include the expert advice of a pain or palliative medicine specialist. Correlating the final plan, particularly when more techno logic solutions are required, with insurance coverage options and available care sites further refines the medical decision making. This becomes the best way of framing the medical decisions that affect a patient’s quality of life-in the patient’s framework of priorities. There remain signi~cant barriers to cancer patients achieving such quality-of-life goals. Not infrequently, the optimal setting for the care to achieve the patient’s goals for quality of remaining time (to see her children, for example) may not be possible given her insurance coverage or available caregivers. Also, the medical-care setting may not recognize the patient’s needs. Health caregivers’ assessments of the degree of pain suffered or the relevance of symptoms reported have been notoriously biased by sex, socioeconomic status, and ethnicity of the patient.19=Zs The ability to “predict” what is “satisfactory” for the patient is difficult and an attitude of respecting and seeking the patient’s perspective and advocating for that outcome is a basic ethical duty. The ethical responsibili~ of the heaith-care system to adequately address pain management will require a response to the greater context of relieving suffering and distress reflected by these issues. In the Cancer Pain Guidelines, the assump don of adequate insurance coverage to receive optimal pain control underpins the discussion A related concern expressed in debates over assisted suicide was the fear that lack of access to optimal pain control or a fear of leaving a f&Sy destitute in order to achieve optimal pain control would lead to biased pressure for the poor or underinsured to choose assisted suicide as a pain-relief measure. The issue oi &ocation of resources and the method ofjusl allocation is clearly at the ethical heart of thir and other debates surrounding pain relief. ~4 generally supported ethical viewpoint is thal
164
Cain and Hammer
both equal access to medical care and availability of a decent minimum of medical care are reasonable expectations of human beings.“= Certainly a basic medical goal such as the relief of suffering and pain should hold a high priority in any package of basic medical care determined by insurance and public policy. The issue of what level of appropriate pain technology, nursing assistance, setting, cost, and adjunctive social support is justified (or just) must be decided for insurance packages. Methods of resource allocation that are used to decide coverage for individuals could be decided by the categories of best medical utility, chance and queuing (first come, first served), or social utility (both the greatest good for the greatest number and social worth). Resource allocation now and in the future mandates involvement of health caregivers in assuring that the best interests of patients are represented for all areas, including pain management. Presently, allocation follows different forms. Elaborate social tables of values !.lave been drawn-for example, in OregonY3- -to prioritize areas of highest value to the pr,pulation, and pain control rates high on these lists. The present solution to the allocation of health care is a system of hidden costs and limited access by bias, which is sometimes based upon gender, socioeconomic status, ethnicity, and healthplan vagaries. Such a hidden system offers no opportunity for dialogue about allocation and what system ofjust allocation should guide us. Ethically, the role of the health-care provider must be one of advocacy for adequate cancer pain management for both individual patients and those who will need care in the future. That advocacy includes recognizing that allocation and denial of resources is already occurring, identifying this, and promoting long-term and short-term policy debate to formulate social consensus about a “just” system of allocation of care. Such a system will encourage the treatment of pain and the greater dimensions of suffering24 for all cancer patients. These ethical dhnensions of pain management forcancer patients must be confronted as diligently as the clinical and pharmacologic dimensions. The imperative to address these issues extends from the bedside to the determination of health care policy> Effective action to
Vol. 9 No. 3 Afn-il I994
respect the basic ethical rights of patients with cancer to adequate pain control affirms the value of life even in the shadow of imminent death.
References 1. Jonsen A, Siegler M, Winslade W. Clinical ethics, 3rd ed. New York: McGraw-Hill, 1992. 2. Schneiderman JS, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990;112:949-954. 3. Brett AS, McCullough LB. When patients request specific interventions: defining the limits of the physician’s obligation, N Engl J Med 1986;315:13471351. 4. American Nursing Association (ANA). Position statement on promotion of comfort and relief of pain in dying patients. Kansas City, MO: ANA, 1991. 5. Reich W. Encyclopedia Free Press, 1992.
of bioethics.
New York:
6. Larkin H. Disabilities Act may require changes for your practice. [AMA] Am Med News 27 Jan 1992:9. 7. Truog RD, Berde C. Pain, euthanasia, and anesthesiologists. Anesthesiology 1993;78:353-360. 8. Helig S. The San Francisco Medical Society euthanasia survey: results and analysis. San Francisco Med 1988;61:24-34. 9. l&n DN, Cleeland CS, Dar R. Public attitudes towards cancer pain. Cancer 1985;56:2337-2339. 10. Solomon M, O’Donnell L, Jennings B, et al. Decisions near the end of life: professional views on life sustaining treatments. Am J Public Health 1993; 83:14-23. 11. Beauchamp TL, Childress JF. Principles of biomedical ethics. New York: Oxford University Press, 1989. 12. Conwell Y Caine E. Rational suicide and the right to die: reality and myth. N Engl J Med 1991;325:1100-1102. 13. Rouse F. Practicing the PSDA [special supplementl. Hastings Cent Rep 1991;21 (suppl) (5):S2-S3. 14. Cassell E. Recognizing Rep 1991;21:24-31.
suffering. Hastings Cent
15. Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life sustaining care. N Engl J Med 1991;324:882-888. 16. Greco PJ, Schulman, KA, Lavizzo-Mourey R, Hansen- Flaschen J. The Patient Self Determination Act and the future of advance directives. Ann Intern Med 1991;115:639-G43. 17. Strull WM, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA 1984;252:2990-2992.
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Ethics and Pain Management
,
165
18. Seckler AB, Meier DE, Mulvihill M, Cammer Paris BE. Substituted judgment: how accurate are proxy predictions? Ann Intern Med 1991;115:92-98.
Medicine and Biomedical and Behadoral Research. Securing access to health care. Washington, DC: Government Printing OflIce, 1983.
19. Todd K, Samaroo N, Hoffman J. Ethnicity as a risk factor for inadequate emergency department analgesia. JAMA 1993;269:153’7-1539.
22. Callahan D. Lidng within limits: the future of health care trends. Health Care Law Ethics 1992;7:15-18.
20. McMurray M. Gender disparities in clinical decision making: report to the American Medical Association Council on Ethical and Judicial Affairs. Chicago, IL: AMA, 1990.
23. Hadorn D. The Oregon priority-setting exercise: quality of life and public policy. Hastings Cent Rep 1991;21:11-16.
21. President’s
Commission
for Ethical Problems
in
24. Cassell E. The nature of suffering and the goals of medicine. N Engl J lMed 1992;306:639-1345.
Vol. 9 No. 3 Aplill994
Journal of Pain and Symptom Management
Ethics and Pain Management: Respecting Patient Wishes Joanna
M. Cain, MD, and Bernard J. Hammes,
PhD
University of Wwhington Me&al Center Department of Obstetricsand Gyneco.?o~(J M. C.), Seattle, Washington; and Lutheran Hospital-La Crosse (BJ H.), La Crosse, Wwconsin
Abstrcrct The fearofpain is common among cancer patients. The management of cancer pain can raise troubling ethical issuesfor medicine and society. Medical caregivers have an ethical duty to @vide therapy that benefits patients by achieving one or more goals of medicine at all points. Pain and symptom relief may be the only achievable goat when curative therapy has failed. Relief of pain can restore &ckion-making capacity and enhance the patient’s tight to self&termination. The underpinning ethical jninciples and extensions of these #ninci$es in the medical context of pain control with varying medicai goals in cam care, including dying patients, is ex$ored, J Pain 3ymptom Manage 1994;9:16&165.
Ethics, cancer pain, terminal care, autonomy
Introduction The management of cancer pain raises troubling ethical issues for patients, families, health-care providers, and society. These issues revolve around moral rights and responsibilities, not only of patients, but also the broader group of individual caregivers, government, medical insurers, medical schools, licensing boards, and administrators involved in health care. Many of these issues have been raised in recently developed cancer pain guidelines: inadequacy of pain relief, adequate patient participation, respect for patient context, and
Address repn’nt requests to: Joanna M. Cain, MD, University of Washington Medical Center, Department of Obstetrics and Gynecology, Mailstop RH-20, Seattle, W4 98195, USA. Acc.@edfwpublication: July 13, 1993. This product is the work of a panel of experts and consumers convened by AHCPR pursuant to Federal Law. This product does not represent necessarily the position of the US Department of Health and Human Services. 0 U.S. Cancer Pain Relief Committee, 1994 Published by Elsevier, New York, New York
to and coverage for adequate pain care. While the clinical barriers are well defined, lack of appreciation for the ethical dimensions of pain management can create its own barrier. This report is intended to expand the discussion of those issues by emphasizing three basic ethical elements:
issues of access
1. The dying cancer patient should never be allowed to live out his or her life with unrelieved pain because of fear of side effects. patient wishes-autonomy2. Respecting must have a high ethical priority in cancer pain management. 3. The role of the health-care provider must be one of advocacy for both individual patients and those who will need care in the future.
Duty to Bene@ and Obligation to Treat Pain The goals of medicine listed by Jonsen and colleagues’ include relief of symptoms, pain,
08855924/94/$7.00
Vol. 9 No. 3 April 1994
Ethics and Pain Management
and suffering; improvement of functional status or maintenance of compromised status; e$ucation and counseling of patients regarding their condition and its prognosis; cure of disease; preventing untimely death; and promotion of health and prevention of disease. At any time during the management of a patient witb cancer, the ~~dica~ons for treatment must benefit the patient by achieving one or more of the goals of medicine. The clear limit to benefit is harm. Pain control relieves symptoms and may restore function. Other modalities of cancer therapy over the cotuse of a patient’s disease process may have a smaller margin between benefit and harm and may indeed become futile*-that is, they provide no, or very limited, benefits and meet no goal of medicine. Physicians are ethically not obligated to offer therapy that will not benefit patients.” In a terminal cancer patient, when the only therapies of benefit are symptom palliation and augmentation of function, pain control assumes an even greater ethical importance. Relieving pain and suffering becomes the major medical goaL In this context, the side effects of high opioid doses can create fears in the treating medical personnel about harming or even killing patients when increasing doses to alleviate pain. The duty to benefit through relief of pain is by itself adequate to support the use of increasing doses to alleviate pain, even if there might be life shortening and expected side effects. Those treating the patient clearly intend an adequate dose-and only that-to relieve pain. In doing so, they accept the potential sequelae. This concept has a long history in moral thought-and has been framed as the principle of double effect.” The principle of double effect delineates the clinical situation when an intended treatment may have inextricably linked deleterious side effects. To meet this ethical concept, the intent of treatment must be clearly focused on the good or beneficial (and medically appropriate) outcome. The treatment must be not morahy objectionable in and of itself. The ad~ninis~tion of medication is always a risk-versus-benefit calculation. When the patient’s death is imminent because of progression of primaty disease, an increased risk of earlier death counts little against the benefit of pain relief and painless
161
death. Given the fact that most of these patients have been receiving opioid analgesics for a signi~cant period of time, the feared shortening of life with side effects is not likely. The dying cancer patient should never be allowed to live out his/her life with unrelieved pain because of fear of side effects. The approp~ate, aggressive palliative sup port of a dying patient differs from the concept of physician-assisted death or euthanasia. The idea of unrelieved pain for which assisted death is the only alternative has been debated in many forums, including broad initiatives in Washington and California that incorporate assisted suicide. The intent of medical intervention in assisted suicide differs markedly from the intent of treatment when death is a secondary accepted risk. In assisted suicide, a morally objectionable means or intent (killing) is the treatment used to achieve a morally permissible end (pain relief). During the discussion over state initiatives, supporters revealed a telling fact: they were attracted to these measures because they feared spending their dying days in uncontrolled pain.%’ Fear of unacceptable pain formed a major component of requests to physicians for assisted deaths and is so important to patients with cancer that 69% reported they would consider committing suicide if their pain was not adequately treated.” The concern that the stimulus for legalizing assisted death comes from inadequate attention to pain and symptom management is also supported by research showing that 81% of physicians and nurses felt that “the most common form of ‘narcotic abuse’ in the care of the dying is the undertreatment of pain.“r” Health-care professionals’ obligations to life and the quality of remaining life argue for broad investment in physician and health-care development of expertise in pain control.
The ethical principle of autonomy’ l encompasses the critical importance of patients’ rights to self-determination regarding health care. A significant element of the care of cancer patients and their pain management is the high priority given to respecting patients’
162
Cain and Hammes
wishes from their own context. The kind of pain management and side effects that are acceptable to patients varies directly with their present and future goals, and their unique view of themselves and the world. Caregivers’ assumptions, without corroboration, of patient wishes, values, and educational needs often lead to rejection of helpful therapy or to acceptance of therapy with a heightened sense of loss of control over one’s destiny. This sense of control may already be beleaguered by the diagnosis and therapy of malignancy. Consider a 75-yr-old patient who is admitted with a large, fungating vulvar mass for which primary chemotherapy and radiation therapy is considered. The patient is ill-kempt, does not meet the staff’s eyes when questioned, and states she just “wants to die.” She has no appetite and has lost 20 pounds over 6 months. She wants pain medicine to “put her to sleep.” She is ambivalent about treatment. While autonomy is a deeply held ethical principle in medical ethics, respecting patient “wishes” involves far more than accepting the face value of a patient’s expression of wishes. This example illustrates an important element in assessing patient capacity to choose: the authenticity of an expressed wish. The overriding element of untreated depression creates a valid question about the ability of this patient to make choices about her care.. The recognition and treatment of depression can be considered as an effort to restore authentic autonomy, allowing the patient the ability to consider carefully, correlate, and communicate his/her wishes and goals. The prevalence of unrecognized depression in patients, particularly those expressing a desire to abandon all therapy and to die, is significant.12 Severe, unrelieved pain itself should be considered a major impingement on a patient’s ability to make choices regarding care and ethically obligates health-care workers to treat such pain on the basis of restoring autonomy as well as beneficence. The obligation of health caregivers to accurately identify patient wishes becomes more stringent when patients are unable to speak for themselves. Any surrogate decision maker should decide as the patient himself or herself would have wished, but information about what a patient would have wished may be limited.
Vol. 9 No. 3 April 1994
The passage of the Patient Self-Determination Act (PSDA)t3 is a clear message to health caregivers that the population wants a durable dialogue with caregivers about what medical interventions are useful to them. The PSDA requires hospitals receiving federal funds to ask patients whether they have advance directives and, if advance directives do not exist, information regarding them must be offered. One of the most clearly delineated of patents’ wishes is adequate attention to pain and symptom management in all phases of care particularly for dying patients.t4 It is reasonable, then, to treat pain in cancer patients who are unable to make choices or who have no surrogate decision makers because not only does it meet a beneficial goal of medicine or restore autonomy, but also is a reasonable assumption about a patient’s wishes for pain management. Advance directives can afford valuable information when choices must be made for patients with limited or no ability to speak for themselves.‘“J6 These generally include directives to physicians (or “living wills”), which may or may not be in a format acceptable in the particular state. Even if not in a proper format, these documents can give caregivers information about what the patient’s choices might have been. Also, durable powers of attorney for health care can identify a person whom the patient has chosen to make such choices. Both can provide health caregivers with significant information about what a particular patient would have wished in present circumstances. A number of investigators, including Strull and colleagues, t7 have demonstrated a desire to discuss such issues, including pain management, in approximately 60% of the patient population. Nonetheless, the number of patients actually discussing this with physicians is less than 8%. Clearly, the burden of introducing these issues-the opening of the door-is on physicians’ shoulders. Information that can be considered by patients, families, and their physicians at a time when impending crisis management is not looming large represents a greater respect for encouraging accurate expression of wishes and values. Whether in the outpatient or inpatient setting, the physician bears a significant moral burden of opening this discussion. These
Vol. 9 No. 3 A/nil I994
Ethics and Pain Management
represe~~t~ons of patient wishes must be carefully evaluated at sequential times, as they must meet the criteria of representing the patient’s choices given the current medical circumstances. Establishing early on in cancer therapy the patient’s goals relevant to mobility, level of awareness, and side effects of pain management will be very helpful when medical decisions may later need to be made by a surrogate decision maker. This basic discussion may be revisited as intensity of treatment or goals of therapy shift. No advance directive IS valid if the patient still has the capacity to make choices. Even if a patient has an advance directive refusing hydration, invasive procedures, and so on, a medical indica~on for these interventions requires that the patient with capacity participate in choices-even if the patient is terminal. Assumptions about pain management, nutrition, hydration, and other needs, should never be made on the basis of advance directive documents when contit~u~~~ dialogue with the patient is possible. Furthermore, surrogate decision makers, either as specified by state statutory law or by a durable power of attorney, should not blindly be accepted by caregivers as choosing in the patient’s best interest.‘s The patient may have clearly communicated a desire for palliative and maximal pain management that included moderate degrees of sedation. A family member or surrogate may have unfinished business with the patient or become anxious at the thought of losing a loved friend or relative, and demand as the patient’s surrogate that therapy be given or a painmanagement plan be altered. Although this person’s grief must be attended to by the patient’s caregivers, the patient’s decisions remain the guiding principle. The patient’s benefit and wishes regarding care remains the primary obligation of caregivers.
Another case may extend this illustration. A 35-y&d has progressive, untreatable cervical cancer. Her goal is to spend time with her children, ages 10 and 12 yr. She has severe pelvic pressure and pain but desires a clear sensorium to interact with her children. Mobil-
163
ity is not as important to her. T gathered from the patient directs her cancer pain-management alternatives. For the patient’s benefit and out of respect for her choices, optimal management of her refractory pain with preservation of cognitive function should be explored through all avenues. This might also include the expert advice of a pain or palliative medicine specialist. Correlating the final plan, particularly when more techno logic solutions are required, with insurance coverage options and available care sites further refines the medical decision making. This becomes the best way of framing the medical decisions that affect a patient’s quality of life-in the patient’s framework of priorities. There remain signi~cant barriers to cancer patients achieving such quality-of-life goals. Not infrequently, the optimal setting for the care to achieve the patient’s goals for quality of remaining time (to see her children, for example) may not be possible given her insurance coverage or available caregivers. Also, the medical-care setting may not recognize the patient’s needs. Health caregivers’ assessments of the degree of pain suffered or the relevance of symptoms reported have been notoriously biased by sex, socioeconomic status, and ethnicity of the patient.19=Zs The ability to “predict” what is “satisfactory” for the patient is difficult and an attitude of respecting and seeking the patient’s perspective and advocating for that outcome is a basic ethical duty. The ethical responsibili~ of the heaith-care system to adequately address pain management will require a response to the greater context of relieving suffering and distress reflected by these issues. In the Cancer Pain Guidelines, the assump don of adequate insurance coverage to receive optimal pain control underpins the discussion A related concern expressed in debates over assisted suicide was the fear that lack of access to optimal pain control or a fear of leaving a f&Sy destitute in order to achieve optimal pain control would lead to biased pressure for the poor or underinsured to choose assisted suicide as a pain-relief measure. The issue oi &ocation of resources and the method ofjusl allocation is clearly at the ethical heart of thir and other debates surrounding pain relief. ~4 generally supported ethical viewpoint is thal
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Cain and Hammer
both equal access to medical care and availability of a decent minimum of medical care are reasonable expectations of human beings.“= Certainly a basic medical goal such as the relief of suffering and pain should hold a high priority in any package of basic medical care determined by insurance and public policy. The issue of what level of appropriate pain technology, nursing assistance, setting, cost, and adjunctive social support is justified (or just) must be decided for insurance packages. Methods of resource allocation that are used to decide coverage for individuals could be decided by the categories of best medical utility, chance and queuing (first come, first served), or social utility (both the greatest good for the greatest number and social worth). Resource allocation now and in the future mandates involvement of health caregivers in assuring that the best interests of patients are represented for all areas, including pain management. Presently, allocation follows different forms. Elaborate social tables of values !.lave been drawn-for example, in OregonY3- -to prioritize areas of highest value to the pr,pulation, and pain control rates high on these lists. The present solution to the allocation of health care is a system of hidden costs and limited access by bias, which is sometimes based upon gender, socioeconomic status, ethnicity, and healthplan vagaries. Such a hidden system offers no opportunity for dialogue about allocation and what system ofjust allocation should guide us. Ethically, the role of the health-care provider must be one of advocacy for adequate cancer pain management for both individual patients and those who will need care in the future. That advocacy includes recognizing that allocation and denial of resources is already occurring, identifying this, and promoting long-term and short-term policy debate to formulate social consensus about a “just” system of allocation of care. Such a system will encourage the treatment of pain and the greater dimensions of suffering24 for all cancer patients. These ethical dhnensions of pain management forcancer patients must be confronted as diligently as the clinical and pharmacologic dimensions. The imperative to address these issues extends from the bedside to the determination of health care policy> Effective action to
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respect the basic ethical rights of patients with cancer to adequate pain control affirms the value of life even in the shadow of imminent death.
References 1. Jonsen A, Siegler M, Winslade W. Clinical ethics, 3rd ed. New York: McGraw-Hill, 1992. 2. Schneiderman JS, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990;112:949-954. 3. Brett AS, McCullough LB. When patients request specific interventions: defining the limits of the physician’s obligation, N Engl J Med 1986;315:13471351. 4. American Nursing Association (ANA). Position statement on promotion of comfort and relief of pain in dying patients. Kansas City, MO: ANA, 1991. 5. Reich W. Encyclopedia Free Press, 1992.
of bioethics.
New York:
6. Larkin H. Disabilities Act may require changes for your practice. [AMA] Am Med News 27 Jan 1992:9. 7. Truog RD, Berde C. Pain, euthanasia, and anesthesiologists. Anesthesiology 1993;78:353-360. 8. Helig S. The San Francisco Medical Society euthanasia survey: results and analysis. San Francisco Med 1988;61:24-34. 9. l&n DN, Cleeland CS, Dar R. Public attitudes towards cancer pain. Cancer 1985;56:2337-2339. 10. Solomon M, O’Donnell L, Jennings B, et al. Decisions near the end of life: professional views on life sustaining treatments. Am J Public Health 1993; 83:14-23. 11. Beauchamp TL, Childress JF. Principles of biomedical ethics. New York: Oxford University Press, 1989. 12. Conwell Y Caine E. Rational suicide and the right to die: reality and myth. N Engl J Med 1991;325:1100-1102. 13. Rouse F. Practicing the PSDA [special supplementl. Hastings Cent Rep 1991;21 (suppl) (5):S2-S3. 14. Cassell E. Recognizing Rep 1991;21:24-31.
suffering. Hastings Cent
15. Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life sustaining care. N Engl J Med 1991;324:882-888. 16. Greco PJ, Schulman, KA, Lavizzo-Mourey R, Hansen- Flaschen J. The Patient Self Determination Act and the future of advance directives. Ann Intern Med 1991;115:639-G43. 17. Strull WM, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA 1984;252:2990-2992.
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,
165
18. Seckler AB, Meier DE, Mulvihill M, Cammer Paris BE. Substituted judgment: how accurate are proxy predictions? Ann Intern Med 1991;115:92-98.
Medicine and Biomedical and Behadoral Research. Securing access to health care. Washington, DC: Government Printing OflIce, 1983.
19. Todd K, Samaroo N, Hoffman J. Ethnicity as a risk factor for inadequate emergency department analgesia. JAMA 1993;269:153’7-1539.
22. Callahan D. Lidng within limits: the future of health care trends. Health Care Law Ethics 1992;7:15-18.
20. McMurray M. Gender disparities in clinical decision making: report to the American Medical Association Council on Ethical and Judicial Affairs. Chicago, IL: AMA, 1990.
23. Hadorn D. The Oregon priority-setting exercise: quality of life and public policy. Hastings Cent Rep 1991;21:11-16.
21. President’s
Commission
for Ethical Problems
in
24. Cassell E. The nature of suffering and the goals of medicine. N Engl J lMed 1992;306:639-1345.