“My father doesn’t want to ever have dialysis. He has diabetes and has had a leg amputated, and now he has kidney failure. My brother died after he started on dialysis.”

This was said by a participant in a class FCA offered last fall called “Making Difficult Decisions, End-of-Life Decision Making.” Said another caregiver, “My husband says he wishes I had never let them put in the feeding tube after his last stroke.”

When caring for someone who has a chronic and ultimately terminal illness, the caregiver and family often must make difficult decisions about the medical care that person will receive. For example, a family may decide not to put their loved one “on machines”—which usually means that if their loved one can no longer breathe without assistance, the family will choose to not have a respirator breathe for him or her.

However, many doctors and family members have not considered the other complications of a chronic but degenerative illness. What if your family member with dementia begins to choke when swallowing food? Will you decide to use a feeding tube? If he/she gets aspiration pneumonia (from food going into the lungs), will you treat that pneumonia by taking the person to the hospital and administering antibiotics, or will you decide to let the pneumonia take its course and arrange for palliative care for your loved one?

One woman whose mother was in the terminal stages of Alzheimer’s decided not to treat her mother’s urinary tract infection. Comfort measures were given and the mother soon died. A caregiver whose father was in the later stages of dementia decided to stop the heart medications his father was taking. Another family had to face whether or not to proceed with surgery for their aunt’s broken hip when she, too, was in the later stages of dementia.

There is no road map for making these decisions, and when they must be made quickly, there may not be enough time to weigh all the pros and cons. It often helps to consult family, medical professionals, social workers and clergy. Family Caregiver Alliance, along with Mid-Peninsula Hospice and the Alzheimer’s Association, with funding from the National Family Caregiver Support Program through the San Francisco County Area Agency on Aging, is developing new publications to help caregivers, family members, clergy and patients think about and discuss these end-of-life decisions. FCA will also offer a workshop this spring for caregivers on these issues.

For more information, call Donna Schempp, LCSW, at FCA, (800) 445-8106.