Family Care at the End of Life: A Personal Reflection

April 12, 2010 • Posted in End of Life

R. Henry  Williams, M.D., M.A.
Board Chair
Tennessee Center for Bioethics and Culture
December 2007

My father-in-law, Ken Johnson, died this fall at age ninety-five. His life was marked by love, faith, uncommon friendliness, and the greatest smile I have ever known.  

As a physician interested in end-of-life issues, I found Ken’s life and death particularly inspiring and instructive.  Prostate cancer, heart disease, and three strokes gradually eroded his quality of life, but could not take away his love for his wife and family, his faith, or his smile.  Neither did illness erase what we saw in him as a man, a father, a grandfather, a great-grandfather.  Even so, life for Ken became difficult, and his days of disability were long.

His devoted wife, Evelyn, exemplified family caregivers during the last years of a person’s life.  Spouses and children are the predominant providers of both long-term and end-of-life care.  75% of caregivers are female, in good or fairly good health, expending the time and energy of at least one full time worker.  Most provide assistance when they do not feel well and often have interrupted sleep.  Many report feeling that their care recipient cannot be left alone, and acknowledge significant emotional and physical strain of their work. Yet the overwhelming majority of end-of-life caregivers surveyed agreed that providing such care “makes me feel good about myself,” “enables me to appreciate life more,” and helps me “feel useful and needed.”

Evelyn, like 95% of such caregivers, was reluctant to use support groups, access respite services, or enroll Ken in programs outside their retirement center.  Her dedication and love for her husband testified against the concept of Ken’s life becoming burdensome, although he suffered from paralysis, limited speech, difficulty eating, and dementia.

Ken entered a nursing facility after Evelyn fell and fractured her hip.  Their children continued to help with Ken’s care, and Evelyn designated one daughter to make healthcare decisions for Ken.  Marnie reminded the caregivers about Ken’s living will:  he did not wish to have cardiopulmonary resuscitation, or have a feeding tube.  The possibility of re-hospitalization was not specifically addressed.

Feeding Ken in a normal way was important to Evelyn, even after he developed swallowing difficulties and tended to spit and eat little.  Going to the dining area together was essential, socially and nutritionally.  But feeding became more problematic.  By October, the staff was using a hydraulic lift to place him in a wheelchair for his trip to the dining hall.  This was difficult, slow, and worrisome.  Ken was not fully alert, could barely take liquids with a straw, and tended to choke on semi-solids.  We became alarmed and felt it may be time to stop trying to feed him.  Without a feeding tube or IV fluids, were we about to deny him something essential, hastening his death?

Orders were unchanged, and Ken was offered feedings if he were the least bit alert.  A few days later Ken developed a fever and became less responsive, apparently from aspiration pneumonia, a stroke, or both.  I suggested that hospice care might be helpful in sorting out what was needed, and a hospice nurse was called at the onset of Ken’s abrupt decline.  It became clear that pain medicine was appropriate and that no attempt should be made to feed him.  He died peacefully a few days later.  Many family members visited at his bedside within the last twenty-four hours to pray, sing to him, and say good-bye.

Hospice care was an easy decision at the point it was made, although it could have been done earlier.  Today hospice provides care for about one third of dying patients in this country, most of whom enroll late in the course of illness (10% of patients enroll in the last 24 hours of life).  Barriers to hospice referral include Medicare eligibility requirements (patients must have no greater than six months life expectancy and must forgo curative treatments) and the challenge of hospice discussions themselves.  When life expectancy is uncertain, or is limited but the patient or family wants aggressive treatment, such discussions are especially difficult. When the prognosis is poor and treatment options limited, hospice may often be the best option.  Even then the conversations are delicate, calling for compassion, sensitivity, and patience on the part of healthcare providers.
The dilemmas and decisions during Ken’s final days could not eclipse the strength of a life well lived, and his family’s love.  His wife and children, the nursing home staff, staff from his church, and the hospice nurse and chaplain were all key players in something very important.  Together they formed a team that made his dying more bearable, and helped honor a long and valued life.  They sustained Ken’s dignity as a human being.