Weighing the decision to refuse palliative care

The decision to refuse palliative care is one that most terminally ill patients will need to consider. Do they enter into a program to treat and manage their symptoms or do they elect to decline active care?

Why Patients Refuse Palliative Care

Patients often decline palliative care out of exhaustion, depression or a desire not to burden loved ones. Family members often share many of these difficult emotions; the Journal of the American Medical Association has reported that family members of patients in the intensive care unit experience emotional distress, including anxiety, depression and post-traumatic stress disorder (PTSD), and this only adds further to the difficulty of the decision to refuse palliative care.

The Right to Refuse Palliative Care

Emotions, however, are not the only consideration when it comes to making end-of-life decisions. There are legal factors to weigh in as well. The Federal Patient Self-Determination Act (PSDA), which has been in effect since 1991, requires that all hospitals and health agencies ensure that legally valid advance directives and documented medical care wishes are implemented to the extent permitted by State law. The law, however, remains vague. The refusal of palliative care is not the same as medical aid-in-dying and only four U.S. states have approved assisted suicide laws: Oregon, Washington, Vermont and California.

In the end, the refusal of palliative care is a choice that ultimately corresponds to the individual, although the decision inevitably has an impact on family and friends. The election to decline palliative care must be made between a patient and their doctor, with full understanding of the physical and emotional ramifications. Refusal, however, is a basic human right that must be respected. How one chooses to define “dying with dignity” cannot be questioned by the law or those around us, regardless of the circumstances.