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Decision Making: Stephen J. McPhee, MD, discusses decision making at a time of crisis near the end of life.
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Decision Making: Stephen J. McPhee, MD, discusses decision making at a time of crisis near the end of life.
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>> I'm Joan Stephenson, Editor of JAMA's Medical News and Perspectives Section. Today I have the pleasure of speaking with Dr. Stephen J. McPhee, one of the editors of JAMAevidence's "Care at the Close of Life" about end-of-life decision making. Dr. McPhee, why don't you introduce yourself to our listeners? >> Hello. I'm Steve McPhee, and I am a physician, general internalist practicing in the years gone by at the University of California at San Francisco, now retired Professor Emeritus, and I'm speaking about an article written by Dr. David Weissman who is in palliative care education in Milwaukee, Wisconsin.
>> Dr. McPhee, what patient characteristics affect end-of-life decision making? >> Dr. Weissman writes that clinical decisions near the end of life fall into two broad categories. The first category is decisions to use potentially life prolonging treatments for emergency conditions such as respiratory failure. The second category is decisions for situations that are non-emergent and typically involve use of palliative treatment that emphasize quality of life, such as the use of morphine for pain or oxygen for dyspnea.
Patient characteristics include end-of-life patient goals, symptom burden of the patient, treatment burden to the caregiver, patient's age and life stage, the patient's personality and psychological makeup, including factors like hope or denial or anticipatory grief or frank depression, and the patient's personal and family culture. For many patients and families, I think deciding to decline further medical intervention represents a relief, a letting go of what has been a long struggle for continued life, but for others, other patients, their families, and often their physicians, the decision to forgo further life sustaining measures even in the face of overwhelming evidence of imminent death is viewed as giving up.
In these situations, palliative care specialists, nurses, chaplains, social workers, psychologists, as well as physicians, can be especially useful I think either individually or together as part of an interdisciplinary patient-family goals of care meeting. The patient's ability to make decisions about his or her own dying and his or her own death is commonly considered a necessary component of a "good death." So, patients who are at peace with the notion that death is approaching or those who have no specific goals left to accomplish, like attending a family wedding, will commonly decline further intervention aimed at prolonging life.
In contrast though, patients with a strong sense of hope for a miracle or for future improvement or those with a strong denial of impending death are likely to request additional life prolonging treatments. Another factor is the patient's psychological state. An important clinician skill is to distinguish frank clinical depression from the normal anticipatory grief and sadness that's associated with dying. Using a single question, "Are you depressed?" can often correctly identify patients with depression.
Physicians must be aware of how these medical decisions are made and by whom within the patient's family system and issues that include understanding the patient's culture and spiritual beliefs. The ever increasing ethnic and cultural diversity of critically ill patients presents us clinicians a challenge, who want to provide culturally competent care. >> Dr. McPhee, what disease characteristics affect end-of-life decision making? >> Disease characteristics that impact end-of-life decision making include cancer versus non-cancer diagnosis, prognosis, treatment risk versus benefit, comorbid illnesses, past response to treatment interventions, the temporal pattern of illness, and treatment financial costs.
So, for example, the nature of the terminal disease, cancer versus non-cancer, will affect decision making. With cancer there is typically a pattern of rapid functional decline that occurs in the last three months of life. This decline, which we often call the "falling off the cliff" stage is generally apparent to both the patients and clinicians as the beginning of the dying process. So, any discussions regarding the appropriate necessary treatment options during this time are held with the recognition in full view that death is approaching.
In contrast there is no clear dividing line for most non-cancer diagnoses like COPD or CHF for which the functional decline is often protracted over years with unpredictable ups and downs. Such patients, their families, and their clinicians are more likely to have difficulty recognizing when they are dying and, by implication, when further disease modifying therapy should be abandoned. >> What physician-related factors can influence end-of-life decisions?
>> There are three physician factors that can influence end-of-life decisions. They include the physician's culture, the physician's personal values, and the physician's spiritual beliefs. So, for the physician's culture, which includes the medical culture, some physicians feel uncomfortable with the concept of withdrawing or withholding artificial feedings nearing the end of life, fearing that patients will die a painful death, a belief incidentally not supported by research findings.
In terms of the physician's personal values, the literature documents that physicians often offer a better prognosis than they believe to be the case in actuality, and finally, spiritual beliefs. One major international study cited in the chapter suggests that physicians' own spiritual beliefs do matter. A prospective observational study of consecutive patients admitted to 17 European ICUs examine the influence of their physicians' religious affiliation and culture on limitations of life sustaining therapies.
Withholding life sustaining therapies occurred more often than withdrawing them if the physician was Jewish, Greek Orthodox, or Muslim. Withdrawing occurred more often among physicians who were Catholic, Protestant, or who had no religious affiliation. >> How can clinicians help patients and families modify end-of-life plans and goals when new findings or information is presented? >> Physicians can organize their approach to helping their patients to make these critical end-of-life decisions by doing four things.
One, assessing the patient's current physical symptoms and psychological and spiritual needs. Two, assessing the family and social support system. Three, estimating and communicating the patient's prognosis. And four, asking the patient to define his or her end-of-life goals. From the patient's point of view, he or she should have an opportunity to learn from the physician the future expected to be course potential treatment options and together with the physician define specific goals of care prior to any acute medical crises.
This type of discussion may or may not result in a change from continued treatment designed to prolong life. Not every crisis or possible intervention can be anticipated and discussed before the crisis occurs. However, beginning the conversation can develop the physician's understanding of the patient's preferences. Dr. Weissman emphasizes that for optimal communication at the end of life, there must be information gathering, information giving, and relationship building.
The existing literature cited in the chapter suggests the patients have highly individualized desires for information and furthermore that clinicians cannot predict patients' preferences. >> How should clinicians handle family conflicts such as when the patient has accepted the impending death, but family members have not? >> A truism of palliative care is that dying patients usually know when they are dying and that acceptance of impending death is typically hardest not for the patient, but rather for those with strong personal connections to the patient.
Provided the patient consents, the physician can assist family members and other individuals struggling to accept the impending death by including them as active participants in end-of-life discussions with the patient. Although physicians, and sometimes families, fear that such open-ended discussions will destroy the patient's hope, published data do not proport the notion that providing truthful information destroys hope. Even actively dying patients can still have hope, for example, for optimal symptom control or resolving difficulties in personal relationships and for a dignified death.
Patients and families need reassurance that no matter what treatment option is chosen, the goal of comfort will always be paramount. This can be communicated by saying things like, "A final option is not to use any further treatment to slow down or shrink the cancer but to refocus our efforts to ensure that you are comfortable for whatever time remains." Once the overall goal has been established, an assessment of patient's specific goals can be made by asking, "What do you need or want to do in the time you have left?" Common replies to this question include ensuring patient comfort, being at home with family, or attending an important family event.
Physicians can help patients meet these goals by reviewing their current medications, tests, and interventions, and for each to ask themselves, "Is this contributing to comfort?" "Is this helping the patient achieve their goals?" Anything not contributing to the patient's goal should be discontinued. A final set of questions that can be addressed, once the goals of care become clear, concerns the place of end-of-life care and necessary support for the patient and family.
It turns out that about half of patients prefer to die at home. >> Dr. McPhee, is there anything else you would like to tell our listeners about decision making near the end of life? >> First, the optimal timing for discussion of end-of-life preferences is during a routine outpatient visit for a patient with a chronic life-limiting disease rather than during a crisis. However, all too often these discussions occur in the hospital, in the ICU, even in the emergency department.
Second, an NIH consensus panel concluded that while enhanced communication among patient's families and clinicians is crucial to high quality end-of-life care, in fact, end-of-life care is often fragmented among healthcare settings and different types of clinicians, leading to a lack of continuity of care and interfering with the ability to provide high quality, interdisciplinary care. Finally, Quill and Brody have suggested that it is important for physicians to make clear recommendations using what they term a relationship-centered decision-making approach.
They argue that the past 20 years has seen an increase in patient-centered decision making in which patients are asked to make decisions with physicians providing information but without physicians making recommendations. This approach represents a limited understanding of the concept of patient autonomy and provides insufficient assistance to patients and families in navigating the complexities of end-of-life care. In Quill and Brody's relationship centered approach, physicians are urged to consider both the patient's and the physician's values to make recommendations based on both.
Unfortunately, there remains considerable work to ensure that a shared relationship-based decision-making process occurs. >> Thank you, Dr. McPhee, for this overview of end-of-life decision making at a time of crisis. For additional information about this topic, JAMAevidence subscribers can consult Chapter 3 of "Care at the Close of Life." This has been Joan Stephenson of JAMA talking with Dr. Stephen McPhee for JAMAevidence.
Segment:0 .
>> I'm Joan Stephenson, Editor of JAMA's Medical News and Perspectives Section. Today I have the pleasure of speaking with Dr. Stephen J. McPhee, one of the editors of JAMAevidence's "Care at the Close of Life" about end-of-life decision making. Dr. McPhee, why don't you introduce yourself to our listeners? >> Hello. I'm Steve McPhee, and I am a physician, general internalist practicing in the years gone by at the University of California at San Francisco, now retired Professor Emeritus, and I'm speaking about an article written by Dr. David Weissman who is in palliative care education in Milwaukee, Wisconsin.
>> Dr. McPhee, what patient characteristics affect end-of-life decision making? >> Dr. Weissman writes that clinical decisions near the end of life fall into two broad categories. The first category is decisions to use potentially life prolonging treatments for emergency conditions such as respiratory failure. The second category is decisions for situations that are non-emergent and typically involve use of palliative treatment that emphasize quality of life, such as the use of morphine for pain or oxygen for dyspnea.
Patient characteristics include end-of-life patient goals, symptom burden of the patient, treatment burden to the caregiver, patient's age and life stage, the patient's personality and psychological makeup, including factors like hope or denial or anticipatory grief or frank depression, and the patient's personal and family culture. For many patients and families, I think deciding to decline further medical intervention represents a relief, a letting go of what has been a long struggle for continued life, but for others, other patients, their families, and often their physicians, the decision to forgo further life sustaining measures even in the face of overwhelming evidence of imminent death is viewed as giving up.
In these situations, palliative care specialists, nurses, chaplains, social workers, psychologists, as well as physicians, can be especially useful I think either individually or together as part of an interdisciplinary patient-family goals of care meeting. The patient's ability to make decisions about his or her own dying and his or her own death is commonly considered a necessary component of a "good death." So, patients who are at peace with the notion that death is approaching or those who have no specific goals left to accomplish, like attending a family wedding, will commonly decline further intervention aimed at prolonging life.
In contrast though, patients with a strong sense of hope for a miracle or for future improvement or those with a strong denial of impending death are likely to request additional life prolonging treatments. Another factor is the patient's psychological state. An important clinician skill is to distinguish frank clinical depression from the normal anticipatory grief and sadness that's associated with dying. Using a single question, "Are you depressed?" can often correctly identify patients with depression.
Physicians must be aware of how these medical decisions are made and by whom within the patient's family system and issues that include understanding the patient's culture and spiritual beliefs. The ever increasing ethnic and cultural diversity of critically ill patients presents us clinicians a challenge, who want to provide culturally competent care. >> Dr. McPhee, what disease characteristics affect end-of-life decision making? >> Disease characteristics that impact end-of-life decision making include cancer versus non-cancer diagnosis, prognosis, treatment risk versus benefit, comorbid illnesses, past response to treatment interventions, the temporal pattern of illness, and treatment financial costs.
So, for example, the nature of the terminal disease, cancer versus non-cancer, will affect decision making. With cancer there is typically a pattern of rapid functional decline that occurs in the last three months of life. This decline, which we often call the "falling off the cliff" stage is generally apparent to both the patients and clinicians as the beginning of the dying process. So, any discussions regarding the appropriate necessary treatment options during this time are held with the recognition in full view that death is approaching.
In contrast there is no clear dividing line for most non-cancer diagnoses like COPD or CHF for which the functional decline is often protracted over years with unpredictable ups and downs. Such patients, their families, and their clinicians are more likely to have difficulty recognizing when they are dying and, by implication, when further disease modifying therapy should be abandoned. >> What physician-related factors can influence end-of-life decisions?
>> There are three physician factors that can influence end-of-life decisions. They include the physician's culture, the physician's personal values, and the physician's spiritual beliefs. So, for the physician's culture, which includes the medical culture, some physicians feel uncomfortable with the concept of withdrawing or withholding artificial feedings nearing the end of life, fearing that patients will die a painful death, a belief incidentally not supported by research findings.
In terms of the physician's personal values, the literature documents that physicians often offer a better prognosis than they believe to be the case in actuality, and finally, spiritual beliefs. One major international study cited in the chapter suggests that physicians' own spiritual beliefs do matter. A prospective observational study of consecutive patients admitted to 17 European ICUs examine the influence of their physicians' religious affiliation and culture on limitations of life sustaining therapies.
Withholding life sustaining therapies occurred more often than withdrawing them if the physician was Jewish, Greek Orthodox, or Muslim. Withdrawing occurred more often among physicians who were Catholic, Protestant, or who had no religious affiliation. >> How can clinicians help patients and families modify end-of-life plans and goals when new findings or information is presented? >> Physicians can organize their approach to helping their patients to make these critical end-of-life decisions by doing four things.
One, assessing the patient's current physical symptoms and psychological and spiritual needs. Two, assessing the family and social support system. Three, estimating and communicating the patient's prognosis. And four, asking the patient to define his or her end-of-life goals. From the patient's point of view, he or she should have an opportunity to learn from the physician the future expected to be course potential treatment options and together with the physician define specific goals of care prior to any acute medical crises.
This type of discussion may or may not result in a change from continued treatment designed to prolong life. Not every crisis or possible intervention can be anticipated and discussed before the crisis occurs. However, beginning the conversation can develop the physician's understanding of the patient's preferences. Dr. Weissman emphasizes that for optimal communication at the end of life, there must be information gathering, information giving, and relationship building.
The existing literature cited in the chapter suggests the patients have highly individualized desires for information and furthermore that clinicians cannot predict patients' preferences. >> How should clinicians handle family conflicts such as when the patient has accepted the impending death, but family members have not? >> A truism of palliative care is that dying patients usually know when they are dying and that acceptance of impending death is typically hardest not for the patient, but rather for those with strong personal connections to the patient.
Provided the patient consents, the physician can assist family members and other individuals struggling to accept the impending death by including them as active participants in end-of-life discussions with the patient. Although physicians, and sometimes families, fear that such open-ended discussions will destroy the patient's hope, published data do not proport the notion that providing truthful information destroys hope. Even actively dying patients can still have hope, for example, for optimal symptom control or resolving difficulties in personal relationships and for a dignified death.
Patients and families need reassurance that no matter what treatment option is chosen, the goal of comfort will always be paramount. This can be communicated by saying things like, "A final option is not to use any further treatment to slow down or shrink the cancer but to refocus our efforts to ensure that you are comfortable for whatever time remains." Once the overall goal has been established, an assessment of patient's specific goals can be made by asking, "What do you need or want to do in the time you have left?" Common replies to this question include ensuring patient comfort, being at home with family, or attending an important family event.
Physicians can help patients meet these goals by reviewing their current medications, tests, and interventions, and for each to ask themselves, "Is this contributing to comfort?" "Is this helping the patient achieve their goals?" Anything not contributing to the patient's goal should be discontinued. A final set of questions that can be addressed, once the goals of care become clear, concerns the place of end-of-life care and necessary support for the patient and family.
It turns out that about half of patients prefer to die at home. >> Dr. McPhee, is there anything else you would like to tell our listeners about decision making near the end of life? >> First, the optimal timing for discussion of end-of-life preferences is during a routine outpatient visit for a patient with a chronic life-limiting disease rather than during a crisis. However, all too often these discussions occur in the hospital, in the ICU, even in the emergency department.
Second, an NIH consensus panel concluded that while enhanced communication among patient's families and clinicians is crucial to high quality end-of-life care, in fact, end-of-life care is often fragmented among healthcare settings and different types of clinicians, leading to a lack of continuity of care and interfering with the ability to provide high quality, interdisciplinary care. Finally, Quill and Brody have suggested that it is important for physicians to make clear recommendations using what they term a relationship-centered decision-making approach.
They argue that the past 20 years has seen an increase in patient-centered decision making in which patients are asked to make decisions with physicians providing information but without physicians making recommendations. This approach represents a limited understanding of the concept of patient autonomy and provides insufficient assistance to patients and families in navigating the complexities of end-of-life care. In Quill and Brody's relationship centered approach, physicians are urged to consider both the patient's and the physician's values to make recommendations based on both.
Unfortunately, there remains considerable work to ensure that a shared relationship-based decision-making process occurs. >> Thank you, Dr. McPhee, for this overview of end-of-life decision making at a time of crisis. For additional information about this topic, JAMAevidence subscribers can consult Chapter 3 of "Care at the Close of Life." This has been Joan Stephenson of JAMA talking with Dr. Stephen McPhee for JAMAevidence.
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