- Email: [email protected]
Attaining Good End-of-Life Care in Intensive Care Units in Taiwan—The Dilemma And the Strategy
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REVIEW ARTICLE
ATTAINING GOOD END-OF-LIFE CARE IN INTENSIVE CARE UNITS IN TAIWAN—THE DILEMMA AND THE STRATEGY Shih-Yi Lee1,2, Chung-Lieh Hung2,3, Jun-Hua Lee4, Shou-Chuan Shih5, Yu-Ling Weng6, Wen-Han Chang2,7,8, Yueh-Hsiu Ho9, Wen-Chu Huang2,10, Yuen-Liang Lai4,11,12,13* 1
Division of Pulmonary and Critical Care Medicine, Mackay Memorial Hospital, 2Mackay Medicine, Nursing and Management College, 3Department of Cardiology, 4Hospice and Palliative Care Center, Mackay Memorial Hospital, 5Division of Gastroenterology, Department of Internal Medicine, 6Department of Internal Medicine, and 7 Department of Emergency Medicine, Mackay Memorial Hospital, 8Graduate Institute of Injury Prevention and Control, Taipei Medical University, Departments of 9Nursing, and 10Obstetrics and Gynecology, Mackay Memorial Hospital, 11General Education Center, Yang-Ming University, 12The Graduate Institute of Humanities in Medicine, Taipei Medical University, and 13Taipei Medical University, Shuang Ho Hospital, Taipei, Taiwan.
SUMMARY One of the major challenges for intensivists is resolving the conflicting interests in end-of-life care. We reviewed patients’ characteristics in an intensive care unit to determine the major barriers of practicing good end-of-life care and the medical ethics involved for the care team to resolve these conflicts. [International Journal of Gerontology 2009; 3(1): 26–30] Key Words: double effect, medical ethics, medical futility, uncertainty
Introduction
Good EOL Care—Where We Are in Taiwan
Every member in the care team has the same fiduciary obligation that is to protect and promote patients’ health-related interests and implement patients’ preferences in pursuit of this goal. However, the conflicting interests of end-of-life (EOL) care result in stress for intensivists in clinical practice. The urgent need for treatment and complexity of the diseases being cared for in an intensive care unit (ICU) make the situation even more complicated. The purpose of this article is to clarify the situation the intensive care team meets on a daily basis, and to equip them to deal with the ethical issues associated with these dilemmas.
There is a growing number of issues concerning the quality of EOL in modern medicine1–3. Physicians in Taiwan are engaged in applying palliative care concepts to care for the patients in the terminal stages of their cancer in hospice units4. They are well practiced in the concerns to alleviate the suffering in dying patients and the grief of family caregivers4. ICUs are environments where patients have illnesses of high morbidity and mortality5. There is a high frequency of intensivists and oncologists dealing with the EOL care for patients in ICU. Attaining good EOL care is as important as prescribing life-sustaining management in ICU6,7. Several activities have been held to promote palliative care principles and service in intensive care4.
*Correspondence to: Dr Yuen-Liang Lai, Hospice and Palliative Care Center, Mackay Memorial Hospital, 45, Minsheng Road, Tamshui Town, Taipei 25115, Taiwan. E-mail: [email protected] Accepted: February 14, 2009
26
Patient Characteristics in the ICU— What Situations Do We Encounter The ICU is a specialized medical environment where critically ill patients are cared for. Patients in ICU have
International Journal of Gerontology | March 2009 | Vol 3 | No 1 © 2009 Elsevier.
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Dilemma and Strategy for End-of-life Care
their own unique characteristics. Their mortality rates are high, varying from 10% to 20% in different ICUs5. Half of them will die within 3 days after admission to the ICU8. One-third of the patients spend more than 10 days in the ICU during their final hospitalization8. Most patients at the onset of critical illness are illprepared to accept death. Their deaths almost always occur earlier than expected. Avoidance of futile care is an essential task in ICU, since the ward is supposed to resuscitate dying patients9. These conflicts come from not only the dilemma of human dignity between the right of life and death, but also the dilemma of differing attitudes toward EOL care between the medical staff and family members10.
The Major Barrier of Practicing Good EOL Care in the ICU Patients in ICU need care that focuses not only on life sustainment but also on comfort9. However, every patient’s background is different. Personal attitudes towards life are so heterogeneous that we can hardly expect to know their wishes for EOL care without communication11. The factors influencing EOL care decisions include age, diagnosis of the disease, severity of the disease(s), length of hospital stay, cost of medical care, and different beliefs based on geography and religion12–14. In Taiwan, although there is no available data regarding diverse decisions of EOL care between patients and their clinicians in the ICU, this fact has been shown in cancer groups10. Holistic care includes not only curative care but also palliative care. Patients in the ICU do change their wishes with regards to their health conditions6. As the patients’ conditions in ICU changes minute by minute9, and because futile therapy should be avoided15, frequent communication to clarify patients’ demand for the goal of management at different points in the disease process is essential in attaining good EOL care16. Difficulty assessing the appropriate use of advanced technology in an incapable patient is another common problem in ICU. Several features in the ICU such as an ill patient incapable of making decisions autonomously, a new care team17, difficulty in organizing meetings11, overbearing family members11 and discordant views on appropriate care among care givers10,11,18,19–22 have made this problem more complicated.
International Journal of Gerontology | March 2009 | Vol 3 | No 1
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What Concepts Should We Be Aware of to Overcome the Dilemma of Attaining a Good EOL Care in the ICU? In view of the patients’ backgrounds and the influencing factors for good EOL care in ICU, only a qualified intensivist can guarantee individualized EOL care during the different stages of the disease for each patient11. The concepts that are essential to attain a patient-centered good EOL care in ICU are outlined below.
A good death or good EOL care There are five components to good EOL care that meets a dying patient’s needs: comfort, absence of pain, dignity and respect, closeness to significant family members and other caring persons, and peace. These are most frequently considered part of a good death23.
Autonomy Rather than paternalism, a patient’s autonomy is a sovereignty of medical ethics during medical decision making. Three elements in “real” autonomy should be considered: the patients’ competence, understanding, and willingness24. There are four questions that a clinician needs to ask in order to assess whether patients have the capacity to make decisions autonomously: Do they understand the nature of the procedure? Do they realize the purpose and the effects of the proposed therapy? Do they have the ability to comprehend and retain relevant information? Can they weigh up the benefits and disadvantages of various interventions? However, it is difficult for the patient to imagine completely what will occur as a result of their decisions. A gap exists between a patient’s understanding and reality. This is not only because patients are not familiar with the language of medicine, but also because most of them cannot really remember what has been mentioned by the clinicians. In addition, the inherently uncertain nature of medicine sometimes also leads to misunderstandings between caregivers and the patients. Consent is also a primary element of patient’s autonomy. Physicians should give more weight to the patients' interests rather than their own. Clinicians should avoid manipulating the medical information or coercing their patients during communication. 27
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Medical futility The strict definition of futile care is still being debated by health care professionals, bioethicists, investigators, and other experts. The definition of a futile treatment should not only be based on a success rate of less than 1 in 100 treatments25, but also focused on other factors, such as quality of life, the emotional and financial costs of treatment, the likelihood of treatment success and the expected effect on longevity26. The perceptions of patients regarding medical futility should be explored and should be considered in the decision26. Any reasonable doubt or uncertainty about the irreversibility of a patient’s medical condition is appropriate to initiate intensive care. Frequent queries, reappraisals of the effect of management, and realistic, honest medical advice in combination with patient and family input on EOL choices are the best way to determine if the treatment is futile6,15.
Palliative care The distress of patients in the ICU is varied27. Interventions in the ICU can increase patient discomfort27. Patients may have a reduced quality of life28. Palliative care in the ICU is an approach that assists the patients and their families to face the discomfort associated with life-threatening illness1,29. Physical, psychologic and spiritual distress can be prevented and relieved by early identification and excellent treatment. Given that dying is a normal process of life, physicians who care for patients should neither hasten nor postpone their death. An explicit patient-centered decision making process for EOL care, including discomfort assessment and control, decisions about life-sustaining therapy, minimizing the symptoms during withdraw therapy and maximizing support for the bereavement of the family, are the body of palliative care in the ICU13,19,30,31.
Ethical difference between withholding and withdrawing treatment Actions taken in EOL care can be grouped into distinct categories including cardiopulmonary resuscitation13, withholding or withdrawing treatment12,17,32,33, and active euthanasia or active shortening of the dying process34. These therapies are also the main EOL decisions during an ICU stay6. These actions have been applied more frequently in recent years17. Withholding treatment is defined as “failing to initiate therapy” and withdrawing treatment as “stopping therapy”. In theory, 28
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except the difference in the timing of the action, a justification for not commencing a treatment is sufficient for ceasing it. In practice, cultural variances in different countries have affected the way these two management practices are performed. In Taiwan, clinicians can apply these two therapies based on the “Hospice Palliative Medical Act” of May 2000, which was revised in November 200235. The main idea behind this law is that “the patient who will unavoidably die in the visible future because of incurable diseases, which has been confirmed by two doctors, has the right to refuse accepting life-sustaining management”. Clinicians in Taiwan can perform withholding treatment under either the patients’ or their surrogates’ wishes, but they can only manage withdrawal therapy under the patient’s autonomy with written documentation34.
Ethical differences among withdrawing treatment, physician-assisted dying and killing Although withdrawal of treatment may or may not hasten death36, it differs from active euthanasia in that sole intent of hastening death obstructs provision of treatment. Physician-assisted dying and killing is unacceptable in most countries in the world, including Taiwan. On the other hand, the concept that patient autonomy can be an overriding force in decision making at the EOL has been approved in some areas, including Oregon and the Netherlands.
Double effect Clinicians prescribe management because these interventions are good for the patient, but inherent unintended “bad” effects may exist at the same time. A common example is cardiorespiratory depression in opioid agents for terminal sedation and analgesia6, There is no clear distinction between the dose of opiates and benzodiazepines for withdrawal therapy and for active life-shortening, further proving this phenomenon12,34. This phenomenon has been called the “double effect”. There is a consensus, “the doctrine of double effect in practice”, having been set to protect patients’ benefit and to confirm the intensivists’ morality24. We are using morphine as an example to show its utility: 1. The act itself must be morally permissible. • Morphine for pain is morally permissible. 2. The negative effect, while possible to predict, must be unintended.
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Dilemma and Strategy for End-of-life Care
• Morphine for pain rather than for respiration depression. 3. The negative effect must not be disproportionate to the good effect. • Morphine for pain outweighs loss of life in a dying patient. 4. The negative effect is not the means by which the good effect is achieved. • Pain is relieved by the administration of morphine and not by the death of the patient. To increase the transparency at EOL care, proper documentation, including record keeping on timing and doses of drug and the physician’s intention at each step, is recommend34.
Justice It is difficult for a human to clarify one therapy as a futile management or a life-sustaining high technology. Since resources are undeniably limited, we may deprive one patient the chance of surviving, while we rescue another one in every way. We suggest the formation of a national institute to oversee just the medical resource allocation24.
Uncertainty Why do we try to avoid discussing death in conversation? Can we predict when or how we will die? The sense of losing control makes us feel the anxiety and fear, as we face the issues of death6. These emotions are common and normal. Medical uncertainties in dealing with EOL care, such as the prognosis of diseases, illness progression, death, modest dosing of pain medication and the death process, also make caregivers uncomfortable. However, recognizing the situation that we are involved in is the best way to overcome this challenge.
Conclusion Autonomy, beneficence, non-malfeasance and justice continue to be the basis of medical bioethics. Recognition of the double effect of management as relieving patients’ suffering, performing withholding and withdrawing life-sustaining therapy according to the “Hospice Palliative Medical Act” and overcoming the stress from uncertainty of the clinical medicine are especially useful for the intensivists handling the palliative and intensive care morally in the ICU. Furthermore,
International Journal of Gerontology | March 2009 | Vol 3 | No 1
■
accounting for cultural influence factors, such as the legal constraints, religious beliefs and sociocultural circumstances, and physician’s experience with similar cases will resolve the conflicting interests in EOL care in a correct way, and achieve patient-centered medical care based on sound ethical reflection and judgment.
References 1.
Rubenfeld GD. Where do we go from here? One intensivist’s perspective. Crit Care Med 2006; 34 (Suppl 11): S412–5. 2. Hegarty M, Currow DC. Palliative aged care: collaborative partnerships between gerontology, geriatrics and palliative care. Int J Gerontol 2007; 1: 112–7. 3. Bridge DT. Curing diseases and healing suffering: inspiration from developments in palliative medicine. Int J Gerontol 2008; 2: 29–32. 4. Gillis J, Lai CT, Lin ML, Lee SY. Connecting palliative care and intensive care in Taiwan. Int J Gerontol 2008; 2: 33–4. 5. Knaus WA, Draper EA, Wagner DP, Zimmerman JE. An evaluation of outcome from intensive care in major medical centers. Ann Intern Med 1986; 104: 410–8. 6. Booij LH. End-of-life decisions during intensive care treatment. Curr Opin Anaesthesiol 2003; 16: 221–5. 7. Gillis J. “We want everything done”. Arch Dis Child 2008; 93: 192–3. 8. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995; 274: 1591–8. 9. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, et al. Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Ann Intern Med 1997; 126: 97–106. 10. Chiu TY, Hu WY, Cheng SY, Chen CY. Ethical dilemmas in palliative care: a study in Taiwan. J Med Ethics 2000; 26: 353–7. 11. Danis M, Federman D, Fins JJ, Fox E, Kastenbaum B, Lanken PN, et al. Incorporating palliative care into critical care education: principles, challenges, and opportunities. Crit Care Med 1999; 27: 2005–13. 12. Sprung CL, Cohen SL, Sjokvist P, Baras M, Bulow HH, Hovilehto S, et al. End-of-life practices in European intensive care units: the Ethicus Study. JAMA 2003; 290: 790–7.
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13. Prendergast TJ, Claessens MT, Luce JM. A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med 1998; 158: 1163–7. 14. Yaguchi A, Truog RD, Curtis JR, Luce JM, Levy MM, Mélot C, et al. International differences in end-of-life attitudes in the intensive care unit: results of a survey. Arch Intern Med 2005; 165: 1970–5. 15. Ethical and moral guidelines for the initiation, continuation, and withdrawal of intensive care. American College of Chest Physicians/Society of Critical Care Medicine Consensus Panel. Chest 1990; 97: 949–58. 16. Lanken PN, Terry PB, Delisser HM, Fahy BF, HansenFlaschen J, Heffner JE, et al. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med 2008; 177: 912–27. 17. Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 1997; 155: 15–20. 18. Sinuff T, Cook DJ, Keenan SP, Burns KE, Adhikari NK, Rocker GM, et al. Noninvasive ventilation for acute respiratory failure near the end of life. Crit Care Med 2008; 36: 789–94. 19. Curtis JR. Caring for patients with critical illness and their families: the value of the integrated clinical team. Respir Care 2008; 53: 480–7. 20. Curtis JR, Engelberg R, Young JP, Vig LK, Reinke LF, Wenrich MD, et al. An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med 2008; 11: 610–20. 21. Rodriguez KL, Young AJ. Elderly veterans’ beliefs concerning life-sustaining treatment and the control of their end-of-life health and health care. J Aging Health 2006; 18: 686–706. 22. Rodriguez KL, Gambino FJ, Butow P, Hagerty R, Arnold RM. Pushing up daisies: implicit and explicit language in oncologist-patient communication about death. Support Care Cancer 2007; 15: 153–61. 23. Ruland CM, Moore SM. Theory construction based on standards of care: a proposed theory of the peaceful end of life. Nurs Outlook 1998; 46: 169–75. 24. Rogers WA, Braunack-Mayer AJ. Justice and resource allocation in general practice. In: Rogers WA, BraunackMayer AJ, eds. Practical Ethics for General Practice. New York: Oxford University Press, 2004.
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25. Guidelines for cardiopulmonary resuscitation and emergency cardiac care. Emergency Cardiac Care Committee and Subcommittees, American Heart Association. Part VIII: Ethical considerations in resuscitation. JAMA 1992; 268: 2282–8. 26. Rodriguez KL, Young AJ. Perceptions of patients on the utility or futility of end-of-life treatment. J Med Ethics 2006; 32: 444–9. 27. Nelson JE, Meier DE, Oei EJ, Nierman DM, Senzel RS, Manfredi PL, et al. Self-reported symptom experience of critically ill cancer patients receiving intensive care. Crit Care Med 2001; 29: 277–82. 28. Angus DC, Musthafa AA, Clermont G, Griffin MF, LindeZwirble WT, Dremsizov TT, et al. Quality-adjusted survival in the first year after the acute respiratory distress syndrome. Am J Respir Crit Care Med 2001; 163: 1389–94. 29. Curtis JR, Treece PD, Nielsen EL, Downey L, Shannon SE, Braungardt T, et al. Integrating palliative and critical care: evaluation of a quality-improvement intervention. Am J Respir Crit Care Med 2008; 178: 269–75. 30. Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 2007; 356: 469–78. 31. Chiu TY, Hu WY, Chen CY. Prevalence and severity of symptoms in terminal cancer patients: a study in Taiwan. Support Care Cancer 2000; 8: 311–3. 32. Keenan SP, Busche KD, Chen LM, McCarthy L, Inman KJ, Sibbald WJ. A retrospective review of a large cohort of patients undergoing the process of withholding or withdrawal of life support. Crit Care Med 1997; 25: 1324–31. 33. Wilson WC, Smedira NG, Fink C, McDowell JA, Luce JM. Ordering and administration of sedatives and analgesics during the withholding and withdrawal of life support from critically ill patients. JAMA 1992; 267: 949–53. 34. Sprung CL, Ledoux D, Bulow HH, Lippert A, Wennberg E, Baras M, et al. Relieving suffering or intentionally hastening death: where do you draw the line? Crit Care Med 2008; 36: 8–13. 35. Lai YL. Taiwan hospice palliative care—a step by step development. Taiwan J Hosp Palliat Care 2006; 11: 404–15. 36. Chan JD, Treece PD, Engelberg RA, Crowley L, Rubenfeld GD, Steinberg KP, et al. Narcotic and benzodiazepine use after withdrawal of life support: association with time to death? Chest 2004; 126: 286–93.
International Journal of Gerontology | March 2009 | Vol 3 | No 1
REVIEW ARTICLE
ATTAINING GOOD END-OF-LIFE CARE IN INTENSIVE CARE UNITS IN TAIWAN—THE DILEMMA AND THE STRATEGY Shih-Yi Lee1,2, Chung-Lieh Hung2,3, Jun-Hua Lee4, Shou-Chuan Shih5, Yu-Ling Weng6, Wen-Han Chang2,7,8, Yueh-Hsiu Ho9, Wen-Chu Huang2,10, Yuen-Liang Lai4,11,12,13* 1
Division of Pulmonary and Critical Care Medicine, Mackay Memorial Hospital, 2Mackay Medicine, Nursing and Management College, 3Department of Cardiology, 4Hospice and Palliative Care Center, Mackay Memorial Hospital, 5Division of Gastroenterology, Department of Internal Medicine, 6Department of Internal Medicine, and 7 Department of Emergency Medicine, Mackay Memorial Hospital, 8Graduate Institute of Injury Prevention and Control, Taipei Medical University, Departments of 9Nursing, and 10Obstetrics and Gynecology, Mackay Memorial Hospital, 11General Education Center, Yang-Ming University, 12The Graduate Institute of Humanities in Medicine, Taipei Medical University, and 13Taipei Medical University, Shuang Ho Hospital, Taipei, Taiwan.
SUMMARY One of the major challenges for intensivists is resolving the conflicting interests in end-of-life care. We reviewed patients’ characteristics in an intensive care unit to determine the major barriers of practicing good end-of-life care and the medical ethics involved for the care team to resolve these conflicts. [International Journal of Gerontology 2009; 3(1): 26–30] Key Words: double effect, medical ethics, medical futility, uncertainty
Introduction
Good EOL Care—Where We Are in Taiwan
Every member in the care team has the same fiduciary obligation that is to protect and promote patients’ health-related interests and implement patients’ preferences in pursuit of this goal. However, the conflicting interests of end-of-life (EOL) care result in stress for intensivists in clinical practice. The urgent need for treatment and complexity of the diseases being cared for in an intensive care unit (ICU) make the situation even more complicated. The purpose of this article is to clarify the situation the intensive care team meets on a daily basis, and to equip them to deal with the ethical issues associated with these dilemmas.
There is a growing number of issues concerning the quality of EOL in modern medicine1–3. Physicians in Taiwan are engaged in applying palliative care concepts to care for the patients in the terminal stages of their cancer in hospice units4. They are well practiced in the concerns to alleviate the suffering in dying patients and the grief of family caregivers4. ICUs are environments where patients have illnesses of high morbidity and mortality5. There is a high frequency of intensivists and oncologists dealing with the EOL care for patients in ICU. Attaining good EOL care is as important as prescribing life-sustaining management in ICU6,7. Several activities have been held to promote palliative care principles and service in intensive care4.
*Correspondence to: Dr Yuen-Liang Lai, Hospice and Palliative Care Center, Mackay Memorial Hospital, 45, Minsheng Road, Tamshui Town, Taipei 25115, Taiwan. E-mail: [email protected] Accepted: February 14, 2009
26
Patient Characteristics in the ICU— What Situations Do We Encounter The ICU is a specialized medical environment where critically ill patients are cared for. Patients in ICU have
International Journal of Gerontology | March 2009 | Vol 3 | No 1 © 2009 Elsevier.
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Dilemma and Strategy for End-of-life Care
their own unique characteristics. Their mortality rates are high, varying from 10% to 20% in different ICUs5. Half of them will die within 3 days after admission to the ICU8. One-third of the patients spend more than 10 days in the ICU during their final hospitalization8. Most patients at the onset of critical illness are illprepared to accept death. Their deaths almost always occur earlier than expected. Avoidance of futile care is an essential task in ICU, since the ward is supposed to resuscitate dying patients9. These conflicts come from not only the dilemma of human dignity between the right of life and death, but also the dilemma of differing attitudes toward EOL care between the medical staff and family members10.
The Major Barrier of Practicing Good EOL Care in the ICU Patients in ICU need care that focuses not only on life sustainment but also on comfort9. However, every patient’s background is different. Personal attitudes towards life are so heterogeneous that we can hardly expect to know their wishes for EOL care without communication11. The factors influencing EOL care decisions include age, diagnosis of the disease, severity of the disease(s), length of hospital stay, cost of medical care, and different beliefs based on geography and religion12–14. In Taiwan, although there is no available data regarding diverse decisions of EOL care between patients and their clinicians in the ICU, this fact has been shown in cancer groups10. Holistic care includes not only curative care but also palliative care. Patients in the ICU do change their wishes with regards to their health conditions6. As the patients’ conditions in ICU changes minute by minute9, and because futile therapy should be avoided15, frequent communication to clarify patients’ demand for the goal of management at different points in the disease process is essential in attaining good EOL care16. Difficulty assessing the appropriate use of advanced technology in an incapable patient is another common problem in ICU. Several features in the ICU such as an ill patient incapable of making decisions autonomously, a new care team17, difficulty in organizing meetings11, overbearing family members11 and discordant views on appropriate care among care givers10,11,18,19–22 have made this problem more complicated.
International Journal of Gerontology | March 2009 | Vol 3 | No 1
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What Concepts Should We Be Aware of to Overcome the Dilemma of Attaining a Good EOL Care in the ICU? In view of the patients’ backgrounds and the influencing factors for good EOL care in ICU, only a qualified intensivist can guarantee individualized EOL care during the different stages of the disease for each patient11. The concepts that are essential to attain a patient-centered good EOL care in ICU are outlined below.
A good death or good EOL care There are five components to good EOL care that meets a dying patient’s needs: comfort, absence of pain, dignity and respect, closeness to significant family members and other caring persons, and peace. These are most frequently considered part of a good death23.
Autonomy Rather than paternalism, a patient’s autonomy is a sovereignty of medical ethics during medical decision making. Three elements in “real” autonomy should be considered: the patients’ competence, understanding, and willingness24. There are four questions that a clinician needs to ask in order to assess whether patients have the capacity to make decisions autonomously: Do they understand the nature of the procedure? Do they realize the purpose and the effects of the proposed therapy? Do they have the ability to comprehend and retain relevant information? Can they weigh up the benefits and disadvantages of various interventions? However, it is difficult for the patient to imagine completely what will occur as a result of their decisions. A gap exists between a patient’s understanding and reality. This is not only because patients are not familiar with the language of medicine, but also because most of them cannot really remember what has been mentioned by the clinicians. In addition, the inherently uncertain nature of medicine sometimes also leads to misunderstandings between caregivers and the patients. Consent is also a primary element of patient’s autonomy. Physicians should give more weight to the patients' interests rather than their own. Clinicians should avoid manipulating the medical information or coercing their patients during communication. 27
■
Medical futility The strict definition of futile care is still being debated by health care professionals, bioethicists, investigators, and other experts. The definition of a futile treatment should not only be based on a success rate of less than 1 in 100 treatments25, but also focused on other factors, such as quality of life, the emotional and financial costs of treatment, the likelihood of treatment success and the expected effect on longevity26. The perceptions of patients regarding medical futility should be explored and should be considered in the decision26. Any reasonable doubt or uncertainty about the irreversibility of a patient’s medical condition is appropriate to initiate intensive care. Frequent queries, reappraisals of the effect of management, and realistic, honest medical advice in combination with patient and family input on EOL choices are the best way to determine if the treatment is futile6,15.
Palliative care The distress of patients in the ICU is varied27. Interventions in the ICU can increase patient discomfort27. Patients may have a reduced quality of life28. Palliative care in the ICU is an approach that assists the patients and their families to face the discomfort associated with life-threatening illness1,29. Physical, psychologic and spiritual distress can be prevented and relieved by early identification and excellent treatment. Given that dying is a normal process of life, physicians who care for patients should neither hasten nor postpone their death. An explicit patient-centered decision making process for EOL care, including discomfort assessment and control, decisions about life-sustaining therapy, minimizing the symptoms during withdraw therapy and maximizing support for the bereavement of the family, are the body of palliative care in the ICU13,19,30,31.
Ethical difference between withholding and withdrawing treatment Actions taken in EOL care can be grouped into distinct categories including cardiopulmonary resuscitation13, withholding or withdrawing treatment12,17,32,33, and active euthanasia or active shortening of the dying process34. These therapies are also the main EOL decisions during an ICU stay6. These actions have been applied more frequently in recent years17. Withholding treatment is defined as “failing to initiate therapy” and withdrawing treatment as “stopping therapy”. In theory, 28
■
S.Y. Lee et al
except the difference in the timing of the action, a justification for not commencing a treatment is sufficient for ceasing it. In practice, cultural variances in different countries have affected the way these two management practices are performed. In Taiwan, clinicians can apply these two therapies based on the “Hospice Palliative Medical Act” of May 2000, which was revised in November 200235. The main idea behind this law is that “the patient who will unavoidably die in the visible future because of incurable diseases, which has been confirmed by two doctors, has the right to refuse accepting life-sustaining management”. Clinicians in Taiwan can perform withholding treatment under either the patients’ or their surrogates’ wishes, but they can only manage withdrawal therapy under the patient’s autonomy with written documentation34.
Ethical differences among withdrawing treatment, physician-assisted dying and killing Although withdrawal of treatment may or may not hasten death36, it differs from active euthanasia in that sole intent of hastening death obstructs provision of treatment. Physician-assisted dying and killing is unacceptable in most countries in the world, including Taiwan. On the other hand, the concept that patient autonomy can be an overriding force in decision making at the EOL has been approved in some areas, including Oregon and the Netherlands.
Double effect Clinicians prescribe management because these interventions are good for the patient, but inherent unintended “bad” effects may exist at the same time. A common example is cardiorespiratory depression in opioid agents for terminal sedation and analgesia6, There is no clear distinction between the dose of opiates and benzodiazepines for withdrawal therapy and for active life-shortening, further proving this phenomenon12,34. This phenomenon has been called the “double effect”. There is a consensus, “the doctrine of double effect in practice”, having been set to protect patients’ benefit and to confirm the intensivists’ morality24. We are using morphine as an example to show its utility: 1. The act itself must be morally permissible. • Morphine for pain is morally permissible. 2. The negative effect, while possible to predict, must be unintended.
International Journal of Gerontology | March 2009 | Vol 3 | No 1
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Dilemma and Strategy for End-of-life Care
• Morphine for pain rather than for respiration depression. 3. The negative effect must not be disproportionate to the good effect. • Morphine for pain outweighs loss of life in a dying patient. 4. The negative effect is not the means by which the good effect is achieved. • Pain is relieved by the administration of morphine and not by the death of the patient. To increase the transparency at EOL care, proper documentation, including record keeping on timing and doses of drug and the physician’s intention at each step, is recommend34.
Justice It is difficult for a human to clarify one therapy as a futile management or a life-sustaining high technology. Since resources are undeniably limited, we may deprive one patient the chance of surviving, while we rescue another one in every way. We suggest the formation of a national institute to oversee just the medical resource allocation24.
Uncertainty Why do we try to avoid discussing death in conversation? Can we predict when or how we will die? The sense of losing control makes us feel the anxiety and fear, as we face the issues of death6. These emotions are common and normal. Medical uncertainties in dealing with EOL care, such as the prognosis of diseases, illness progression, death, modest dosing of pain medication and the death process, also make caregivers uncomfortable. However, recognizing the situation that we are involved in is the best way to overcome this challenge.
Conclusion Autonomy, beneficence, non-malfeasance and justice continue to be the basis of medical bioethics. Recognition of the double effect of management as relieving patients’ suffering, performing withholding and withdrawing life-sustaining therapy according to the “Hospice Palliative Medical Act” and overcoming the stress from uncertainty of the clinical medicine are especially useful for the intensivists handling the palliative and intensive care morally in the ICU. Furthermore,
International Journal of Gerontology | March 2009 | Vol 3 | No 1
■
accounting for cultural influence factors, such as the legal constraints, religious beliefs and sociocultural circumstances, and physician’s experience with similar cases will resolve the conflicting interests in EOL care in a correct way, and achieve patient-centered medical care based on sound ethical reflection and judgment.
References 1.
Rubenfeld GD. Where do we go from here? One intensivist’s perspective. Crit Care Med 2006; 34 (Suppl 11): S412–5. 2. Hegarty M, Currow DC. Palliative aged care: collaborative partnerships between gerontology, geriatrics and palliative care. Int J Gerontol 2007; 1: 112–7. 3. Bridge DT. Curing diseases and healing suffering: inspiration from developments in palliative medicine. Int J Gerontol 2008; 2: 29–32. 4. Gillis J, Lai CT, Lin ML, Lee SY. Connecting palliative care and intensive care in Taiwan. Int J Gerontol 2008; 2: 33–4. 5. Knaus WA, Draper EA, Wagner DP, Zimmerman JE. An evaluation of outcome from intensive care in major medical centers. Ann Intern Med 1986; 104: 410–8. 6. Booij LH. End-of-life decisions during intensive care treatment. Curr Opin Anaesthesiol 2003; 16: 221–5. 7. Gillis J. “We want everything done”. Arch Dis Child 2008; 93: 192–3. 8. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995; 274: 1591–8. 9. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, et al. Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Ann Intern Med 1997; 126: 97–106. 10. Chiu TY, Hu WY, Cheng SY, Chen CY. Ethical dilemmas in palliative care: a study in Taiwan. J Med Ethics 2000; 26: 353–7. 11. Danis M, Federman D, Fins JJ, Fox E, Kastenbaum B, Lanken PN, et al. Incorporating palliative care into critical care education: principles, challenges, and opportunities. Crit Care Med 1999; 27: 2005–13. 12. Sprung CL, Cohen SL, Sjokvist P, Baras M, Bulow HH, Hovilehto S, et al. End-of-life practices in European intensive care units: the Ethicus Study. JAMA 2003; 290: 790–7.
29
■
S.Y. Lee et al
13. Prendergast TJ, Claessens MT, Luce JM. A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med 1998; 158: 1163–7. 14. Yaguchi A, Truog RD, Curtis JR, Luce JM, Levy MM, Mélot C, et al. International differences in end-of-life attitudes in the intensive care unit: results of a survey. Arch Intern Med 2005; 165: 1970–5. 15. Ethical and moral guidelines for the initiation, continuation, and withdrawal of intensive care. American College of Chest Physicians/Society of Critical Care Medicine Consensus Panel. Chest 1990; 97: 949–58. 16. Lanken PN, Terry PB, Delisser HM, Fahy BF, HansenFlaschen J, Heffner JE, et al. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med 2008; 177: 912–27. 17. Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 1997; 155: 15–20. 18. Sinuff T, Cook DJ, Keenan SP, Burns KE, Adhikari NK, Rocker GM, et al. Noninvasive ventilation for acute respiratory failure near the end of life. Crit Care Med 2008; 36: 789–94. 19. Curtis JR. Caring for patients with critical illness and their families: the value of the integrated clinical team. Respir Care 2008; 53: 480–7. 20. Curtis JR, Engelberg R, Young JP, Vig LK, Reinke LF, Wenrich MD, et al. An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med 2008; 11: 610–20. 21. Rodriguez KL, Young AJ. Elderly veterans’ beliefs concerning life-sustaining treatment and the control of their end-of-life health and health care. J Aging Health 2006; 18: 686–706. 22. Rodriguez KL, Gambino FJ, Butow P, Hagerty R, Arnold RM. Pushing up daisies: implicit and explicit language in oncologist-patient communication about death. Support Care Cancer 2007; 15: 153–61. 23. Ruland CM, Moore SM. Theory construction based on standards of care: a proposed theory of the peaceful end of life. Nurs Outlook 1998; 46: 169–75. 24. Rogers WA, Braunack-Mayer AJ. Justice and resource allocation in general practice. In: Rogers WA, BraunackMayer AJ, eds. Practical Ethics for General Practice. New York: Oxford University Press, 2004.
30
■
25. Guidelines for cardiopulmonary resuscitation and emergency cardiac care. Emergency Cardiac Care Committee and Subcommittees, American Heart Association. Part VIII: Ethical considerations in resuscitation. JAMA 1992; 268: 2282–8. 26. Rodriguez KL, Young AJ. Perceptions of patients on the utility or futility of end-of-life treatment. J Med Ethics 2006; 32: 444–9. 27. Nelson JE, Meier DE, Oei EJ, Nierman DM, Senzel RS, Manfredi PL, et al. Self-reported symptom experience of critically ill cancer patients receiving intensive care. Crit Care Med 2001; 29: 277–82. 28. Angus DC, Musthafa AA, Clermont G, Griffin MF, LindeZwirble WT, Dremsizov TT, et al. Quality-adjusted survival in the first year after the acute respiratory distress syndrome. Am J Respir Crit Care Med 2001; 163: 1389–94. 29. Curtis JR, Treece PD, Nielsen EL, Downey L, Shannon SE, Braungardt T, et al. Integrating palliative and critical care: evaluation of a quality-improvement intervention. Am J Respir Crit Care Med 2008; 178: 269–75. 30. Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 2007; 356: 469–78. 31. Chiu TY, Hu WY, Chen CY. Prevalence and severity of symptoms in terminal cancer patients: a study in Taiwan. Support Care Cancer 2000; 8: 311–3. 32. Keenan SP, Busche KD, Chen LM, McCarthy L, Inman KJ, Sibbald WJ. A retrospective review of a large cohort of patients undergoing the process of withholding or withdrawal of life support. Crit Care Med 1997; 25: 1324–31. 33. Wilson WC, Smedira NG, Fink C, McDowell JA, Luce JM. Ordering and administration of sedatives and analgesics during the withholding and withdrawal of life support from critically ill patients. JAMA 1992; 267: 949–53. 34. Sprung CL, Ledoux D, Bulow HH, Lippert A, Wennberg E, Baras M, et al. Relieving suffering or intentionally hastening death: where do you draw the line? Crit Care Med 2008; 36: 8–13. 35. Lai YL. Taiwan hospice palliative care—a step by step development. Taiwan J Hosp Palliat Care 2006; 11: 404–15. 36. Chan JD, Treece PD, Engelberg RA, Crowley L, Rubenfeld GD, Steinberg KP, et al. Narcotic and benzodiazepine use after withdrawal of life support: association with time to death? Chest 2004; 126: 286–93.
International Journal of Gerontology | March 2009 | Vol 3 | No 1