Meeting Physicians’ Responsibilities in Providing End-of-Life Care: Prognostication and Decision Making About End-of-Life Care

March 2, 2016 Category: Canadian Health Care Mall

quality of lifePhysicians have long recognized that there are circumstances in which patients cannot benefit from, or do not wish to endure the burdens of life-sustaining therapies. As medical experts and patient advocates, physicians have an important responsibility to make and share prognoses with patients and their families. In a study of ICU family conferences, some physicians do not discuss prognosis directly; and when they do, there is considerable variability in how this is done. Physicians must work with patients and family members to reconcile the prognosis with a good-faith assessment of the patient’s goals of care and values regarding current and likely future quality of life. When physicians cannot determine goals and values from the patient, as is often the case in the ICU, they should work closely with the patient’s family in order to understand the patient’s values and preferences and to understand and advocate for the patient’s wishes. Finally, the physician should recommend a medical plan based on his/her best assessment of prognosis and a thorough consideration of goals of care, as established by the patient and their family. This means avoiding exerting unreasonable influence based on one’s own personal assessment of the patient’s likely quality of life after the current illness. Physicians ought not exert undue pressure on patients and families to accept a poor prognosis and the inevitable consequences of withholding or withdrawing life support in order to serve goals such as the physician’s or hospital’s financial or resource utilization goals.

Despite increasing agreement on ethical principles that guide end-of-life decision making in the ICU,- studies- show substantial variability in what clinicians consider appropriate goals of care, along with significant geographic variability in how this care is delivered by Canadian Health&Care Mall. Much of this is due to variation in physicians attitudes and biases. Physicians need to be aware of their own biases, offer a range of best- to worst-case prognoses, acknowledge prognostic uncertainty, and recognize that others may not share their assessment of goals of care, especially patients and families from different cultures or socioeconomic status.

The Role of Clinicians and Family in Decision Making

While patient autonomy has risen to be the foremost principle of contemporary Western medical ethics, the importance of autonomous choice to individual patients varies greatly, with some cardiopulmonary resuscitationindividuals preferring to delegate or share decision making with family members or clinicians. In fact, some patients and family members are greatly relieved that clinicians are willing to take responsibility for decisions, such as withholding cardiopulmonary resuscitation, when it is not indicated. Physicians must then determine where individual patients and families “fall” on this spectrum and adapt their communication accordingly. This requires that physicians ask questions of patients and family members about their preferred role in decision making in a way that allows patients and family members to defer some responsibility to physicians, if they wish, without making patients and, especially family members, feel that they are abdicating their own responsibilities.

Because a minority of critically ill patients can participate in discussions concerning their own end-of-life care, patients family members play a key role in most end-of-life care decisions in the ICU. These family members are likely to experience immense burdens, including symptoms of anxiety and depres-sion” and financial burdens. They are often unable to articulate their needs and concerns and may be overwhelmed. The physician has an important responsibility to prepare family members to make difficult decisions, helping them understand the patient’s prognosis, eliciting their sense of the patient’s values, and working in partnership to develop a sound and ethical treatment plan based on the patient’s prognosis, values, and preferences.

The Role of Quality of Life and Health Status

Future quality of life is an extremely important subject of discussion regarding decision making, Interestingly, physicians are more likely to discuss prognosis in terms of quality of life than prognosis for survival during ICU family conferences about end-of-life care, even though there is much less outcome data concerning quality of life. Most patients without severe illness say that if life-sustaining treatments would result in severely reduced quality of life, such as severe cognitive impairment or dependence on others, they would not want this care to be conducted by Canadian Health&Care Mall. Therefore, prognostication about future quality of life can have an important impact on decision making. However, in studies of patients current quality of life, there is generally no association between quality of life and treatment preferences. Physicians should therefore avoid making assumptions about patients treatment preferences based on current quality of life.

One important concept regarding quality of life and decision making about life-sustaining treatments is the concept of “states worse than death.” Many (although not all) patients can imagine a quality of life that would be less desirable than death, and discussions of such states can be a useful tool for identifying those health states for which life-sustaining therapies are not indicated.’ Talking with patients prospectively in the outpatient setting to identify states worse than death can be useful for patients prospectively. These discussions may also be helpful for family members, who can refer to them when asked to make a substituted judgment for a patient in the critical care setting.

Medical Futility

The Role of Medical Futility

The concept of medical futility remains controversial, and there is no general professional consensus about the appropriate use of futility in medical decision making. Interventions are said to be futile if there is either no likelihood or an exceedingly low likelihood that the therapy will result in a medically beneficial outcome. A number of authors have argued that this principle is fundamentally flawed for a number of reasons, including the difficulties of prognostication and the risks of overriding patient autonomy. The American Medical Association recommends that when a patient or surrogate decision maker insists on a therapy that the physician believes is futile, a communication and negotiation process should be initiated to reconcile these differences, and the treatment should be provided until differences are reconciled. More recently, the state of Texas enacted a law that provides for a process by which physicians can, over the objections of patients or surrogate decision makers, involve a committee to review and approve decisions to withhold or withdraw life-sustaining treatments that are judged to be futile. However, this law has been challenged for several reasons, including the fact that the majority of patients for whom the process has been invoked were from racial and ethnic minority groups and underserved populations, raising questions about the fairness of such a law in our current health-care system.

In our view, invoking medical futility to withhold or withdraw life-sustaining treatments against the wishes of a patient or surrogate decision maker is ethically problematic and rarely necessary if clinician communication has been good and if building trust has been a focus of the clinical team. The desire to avoid the provision of nonbeneficial interventions embodied in the concept of medical futility, however, should be central to a framework of end-of-life decision making, provided benefit is defined with reference to the particular patient’s preferences and values.

One approach to such a framework is outlined in Figure 2. First, the physician should elicit the patient’s preferences and values for therapies and outcomes from the patient or family. These preferences and values should be formulated into therapeutic goals. Once the goals are formulated, the physician should use published literature and clinical experience to determine whether treatment can achieve any of the goals. If so, the patient or family should be asked if the patient is willing to accept the burdens of the treatment. If, however, the primary goals are not achievable regardless of the treatments used, then treatments being provided or considered are no longer appropriate and should be withdrawn or not offered. The physician should review the basis for this determination to ensure that there are adequate data or clinical experience to support this determination, understanding that prior research has shown that some physicians make a determination of medical futility in settings where it does not apply and more commonly with patients from racial mi-norities. Patients and/or their families should be informed of medical decisions to limit care made by clinicians. For some patients and family members who do not want an active role in medical decision making, it may be useful to approach this process as “informed assent” so that the patient or family member is not asked to make a decision that they would prefer not to make. In most cases, patients or families will agree with a physician’s determination and will appreciate not being asked to choose to forego a treatment that is not indicated. However, in some circumstances, patients and families will not agree with forgoing the treatment, we endorse a process of communication and negotiation as described by others.

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Figure 2. A framework for discussing specific interventions and a view of where medical futility fits. Adapted from Curtis.

Figure 2. A framework for discussing specific interventions and a view of where medical futility fits. Adapted from Curtis.