Almost blind from macular degeneration, weakened from a fall with a head injury, my cousin spent his final weeks in a kind, nursing facility. He did not wish to inconvenience anyone. In one of our final phone conversations, he stated, "Don't make a fuss." He died quietly. Family and friends gathered in the historic United Methodist Church in Pine Mountain, Georgia, to celebrate his life, recall his courage, hard work and gentle humor. He had chosen music and Scripture for the service. A traditional, Southern lunch of fried chicken, potato salad, deviled eggs and other treats followed in the fellowship hall of the church.
My first experiences with dying people date from my boyhood in West Georgia as the generation of my grandparents and great uncles and aunts wound down. In the 1940s and 50s, limited hospital interventions resulted in many stricken seniors completing their lives at home. A grandfather who had suffered a debilitating stroke died after several days at home under the care of loved ones and daily visits from his physician. A grandmother who had likely sustained a heart attack with congestive failure was tended by a rotation of her children and a visiting nurse until her demise.
Accompanied by my parents, I visited the bedside in the home of a great uncle, a retired general practitioner, who was dying from cancer. Family members fed and comforted him. A colleague administered injections for pain.
Subsequent decades have brought remarkable advances in treating serious illnesses and injuries. Highly trained teams, backed by an ever-expanding array of technical devices, can reopen blocked coronary and cerebral arteries. Intensive care units can pull a patient back from the precipice of collapse and death and sustain life indefinitely. The function of most organs can be managed by machines. Rapidly progressive cancers can be contained or obliterated. There is literally no end to the therapy and technology that can be employed.
Because interventions are limitless, an advance directive and the appointment of a surrogate decision-maker are essential for maintaining a say-so in one's care in desperate circumstances. Think of this as preplanning for possible calamity. An advance directive permits an individual to express her preferences for care in the event of such catastrophes as persistent coma, intractable suffering from widespread cancer, or severe brain injury. In those circumstances, do you want CPR in the event of a cardiac arrest? Do you want tube or intravenous feeding or antibiotics, if you are comatose with no possibility of awakening?
Appointment of a surrogate, decision-maker assures that these wishes will be honored in the event of your inability to communicate at a critical time. Every state provides on-line forms and instructions for those purposes. Five Wishes offers an all-encompassing form for expressing end-of-life preferences (www.fivewishes.org). Fewer than 40 percent of adults have advance directives.
Hospice is another important consideration in life's final chapter when the focus of care must shift to comfort as opposed to aggressive therapy. Hospice services are available for home or in-patient care. The goal in either location is to assure a gentle passage from life. The hospice team addresses pain and provides emotional and spiritual support for the patient and, indirectly, for her family. My most direct contact with hospice was in the splendid care rendered to my mother during her final months of life. Pain and fear did not intrude on her during this time, thanks to the hospice nurses who visited her home most days and were always available for advice or additional visits if problems arose.
Because some clinical teams are reluctant to admit that reasonable therapy is at an end, referrals to hospice often are delayed until the final, few days of life, if they are made at all.
Back at the church in Pine Mountain, a perfectly rendered playing of "Taps" honored the combat service in World War II of my beloved cousin.
Contact Clif Cleaveland at ccleaveland@timesfreepress.com.