Advance Care Planning: Respecting End-of-Life Choices
by Doris E. Hawks
When a loved one with special needs faces a life-threatening illness, the swirl of emotions can cloud decision-making. Early discussions and planning can avoid crisis-generated choices and facilitate compassionate end-of-life care that’s consistent with the individual’s and her family’s values and wishes. Such discussions are a key element of “advance care planning.”
Such planning is frequently incorporated into advance health care directives. This planning requires the involvement of the patient, health care proxy, caregivers, other family members and health care professionals in an exploration of the individual’s values concerning choices and quality of life. Would they desire an aggressive, life-prolonging treatment plan, one entirely focused on comfort care or a blend of the two?
Obviously the subject must be carefully broached, and those closest to the patient need to gauge the individual’s understanding of the health issues and readiness to explore them. By describing treatment scenarios, medical professionals can facilitate an informed discussion.
Would the patient be more comfortable at home or in a hospital? Would close family members be able to help with care? Because doctors are trained to preserve life—sometimes at the expense of comfort—it’s important that the health care team clearly understands choices that may favor symptom control over artificial life-extending measures.
Caregivers themselves are initially uncomfortable talking about these matters but, again, the medical team can help. Often the patient will develop a special attachment to one member of the health care team. That person can play the role of an “inside-the-system” advocate who can also become a reassuring presence to family members.
When the patient has a cognitive disability that precludes a candid discussion, caregivers and family members should draw upon the individual’s lifelong behavior for important indications of preferences. How tolerant of pain is she? Does he become upset in an unfamiliar environment? Has he ever made comments about the serious illness of a family member or friend?
Once preferences have been determined, they should be recorded in the health care record and, if the patient has capacity to do so, in a document signed by the patient and witnessed. Updates should be made as circumstances change.
These discussions are undoubtedly difficult, but respectful attention to the end-of-life choices of a loved one with disabilities can contribute dignity and comfort during a final illness.
A document written especially for individuals with developmental disabilities, called “Thinking Ahead,” can be downloaded in any of four languages from Coalition for Compassionate Care, http://coalitionccc.org/thinking-ahead.php.