Burdens Versus Benefits: When Family Has to Decide How Much Is Too Much

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Abstract

Advanced directives allow patients to designate an agent to make decisions for them if they become incapacitated and unable to make their own decisions. Unfortunately, designating an agent does not ensure that that person understands the patient’s preferences for treatment or has the ability to carry out the patient’s wishes. This can leave end-of-life decision making up to individuals who may not be able to understand medically what is happening and may be too emotionally invested to make difficult decisions. Families may request nonbeneficial treatments in these situations that can raise ethical issues such as autonomy and nonmaleficence. Conflict within the family and between the family and health care team regarding the burdens and benefits of further treatment can lead to moral distress. The many dimensions that can influence health care decisions including communication about goals and values, the risks and benefits of proposed treatments, prognostication, and the family’s and clinicians’ response to the situation will be discussed. The palliative care advanced practice registered nurse can play a key role in providing information and supporting family during this difficult time. However, even with this support, family members may continue to have difficulty making end-of-life decisions for their loved ones.

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