Headbloom Blog

Death and dying in America (Part 2)

Earlier this year, my father had surgery to replace three clogged arteries near his heart (what is called “triple bypass surgery” ). A little later in the year, he had surgery to remove a cancerous growth in his bladder. After both hospitalizations, he complied with all the requisite rest, follow-up treatments, and medications. For an octogenarian, my dad is very feisty and very independent. He seemed to bounce back from each of these procedures with the strength and optimism which characterize his life.

And then in September, routine medical tests showed some things his family doctor didn’t like. Dad was admitted to the hospital so doctors could do further tests…and keep him near an operating room if the results warranted immediate surgery. What we thought would be a short stay in his local hospital turned into 13 days. During that time, the doctors did tests, my father got little rest, and the whole family grew impatient. Finally, a team of oncologists and colorectal surgeons convened a meeting to tell the family that Dad’s abdominal cancer had returned and was now inoperable. They told us to make preparations to take him home, under the care of hospice, and allow him to live out his final days in the peaceful space of his home and family.

At this point, you should know that there are three basic options for the very sick in the United States: (1) stay in the hospital, (2) go to a hospice center, and (3) go home under hospice care. Hospitalization is mostly geared toward helping the sick become better. It is expensive to stay there because of availability of round-the-clock staff, life-saving equipment, and drugs. It is not the logical choice for dying patients. If the family has no physical space or support from family members and friends, a dying patient can be sent to a hospice center. This is essentially a medical center with enough staff and medicine to make the patient comfortable, but with no equipment or plan to save the patient’s life. Home hospice care: The final option is to send the patient home to die in his/her own private surroundings under the care of family and friends with periodic visits by registered hospice nurses and home health-care workers. These are professionals who assist in medicating the patient for relief from pain, bathing the patient, or doing other tasks to keep the patient comfortable and the family counseled about the process of dying.

What I like about home hospice care is that it allows a patient and family the dignity to keep personal contact with familiar spaces, objects, views, and schedules. What is strange is that a former center for living—the house’s living room or family room—has now become a medical facility, complete with hospital bed, railings, and electrical cords. There are electric pumps to drain Dad’s stomach and—if needed—to drain fluids from his breathing passages. He wears a hospital gown, compression stockings on his lower legs, and warm socks with little traction-grips on the soles. His arm has a port in case drugs need rapid intravenous injection, and his stomach is being drained through another tube because his lower bowels are obstructed with the cancer. The latter suction tubing at least allows him to drink liquids and eat some soft, mushy foods if he is “hungry.” Mostly, he isn’t.

We like the home health-care worker. Nancy is cheerful, professional, and matter of fact. She helps Dad with showering and checking his site dressings. Connie the hospice nurse has worked in hospice service for eight years. She loves her job helping families through this transition period. Her first visit is at 8:00 in the evening; she stays for over an hour. (After the visit, she will go to the funeral home to visit the family of a former patient.) Her advice to us that evening is partly medical, partly psychological, and thoroughly practical. She tells us up front she is not there for the family members; her #1 job is her patient’s comfort and safety. I like her demeanor and her candor. A lot. She is kind but direct. Whatever they pay hospice nurses, I think it’s probably not enough.

Alan Headbloom