Three months ago, doctors discovered cancer in both of Rick’s kidneys. The kidneys were removed and he and his wife coped well with home dialysis. He returned to work, took care of his son, remodeled his kitchen and went to a Redskins game.
Then disaster struck. It all happened so quickly. On a Tuesday his wife noticed Rick was confused. By Wednesday he was hallucinating and an MRI showed that his brain was studded with inoperable cancer. Doctors said chemotherapy or radiation might buy him a few more weeks of life, but they couldn’t predict whether he would become more lucid. When Rick was coherent, his only wish was to go home.
“Where are you, Rick?” said the intern, testing Rick’s mental status.
“I don’t know,” he answered politely, “but I want to go home.”
Rick was confused and disoriented, but he was fully aware that he was confused and disoriented. I showed him pictures of my children I keep on my key chain; he shook my keys and gently put them back in my hand: “You better drive. I’m too f–ed up to drive.”
My brother was a strong guy. He kept getting up out of bed. The hospital staff tied him down. He was furious, humiliated, embarrassed, enraged, confused and frightened.
A hospital is no place to die. It’s noisy and busy and impersonal; there’s no privacy anywhere for conversation or a last marital snuggle; there’s no place for the family to wait and nap; only one or two people can be with the dying person. The rest of the family hovers unconnected in a waiting room, drinking bad coffee, making long phone calls on pay phones in lobbies. It was exhausting.
Please don’t misunderstand me; I like hospitals. Hospitals are great places to live, to struggle for life, to undergo treatments, to have surgery, to have babies. But not to die. If it’s at all possible, people should die in familiar surroundings in their own beds.
Rick begged to go home. The doctors could offer us nothing more. Hospice care wasn’t available on such short notice. We au knew it would be an enormous responsibility to take him home.
But Rick’s wife is the most determined person I know. He wanted to go home and she wanted to take him home. Rick’s doctor was empathetic and efficient; in less than two hours after we came to this decision, we were on the road in an ambulance, heading to his house.
Rick’s last evening was wild, fun, tragic and exhilarating. Rick walked from room to room in his house, savoring a glass of red wine, eating a cookie, talking with his best friend, our mother and dad, our sisters and brothers. Neighbors stopped in with food and stayed for the conversation. Friends from the Quaker Meeting House stopped by. Cousins arrived.
It was like a Thanksgiving-good food, lots of conversation, but the guest of honor would be dead in a few days, or hours.
Although Rick was confused he wasn’t frightened. Rick knew he was in his home, surrounded by friends and family. He was thrilled to be there. He ate. He cleaned. He was busy all evening, reminiscing, telling fragments of stories, neatening up, washing dishes, giving advice and eating well.
At the end of the evening he brushed his teeth, washed his face, lay down in his wife’s arms in his own bed and kissed her goodnight. By morning he was in a deep coma.
All that long Saturday my family was together and we grieved. We watched over Rick. My father planted bulbs, daffodils and tulips, to make the spring beautiful for his grandson. My mother washed Rick’s hair. My brothers and sisters and in-laws painted the porch banisters. Family, friends and neighbors came by to see him sleeping in his bed. Sometimes as many as 10 people were in his bedroom, talking, crying, laughing or telling stories about him, or just being with him-other times it was just his wife.
He took his last breath with his wife and his best friend beside him, his family singing old folk songs in the living room. He was peaceful, quiet, never frightened or restrained. Rick died far too young. But everyone should hope to die like this; not just with dignity, but with fun and love, with old friends and family.
Over the past week I have told friends about my brother’s death. A few friends shared with me their regret about their parents dying prolonged and painful deaths alone in the hospital, sedated or agitated, not recognizing their children. Other people express fear of a dead body in the house-“Wasn’t it ugly?” they ask. No, it looked like he was sleeping.
Rick’s death was as gentle as a death can be, It worked because all parties-doctors, family, Rick and Rick’s wife-were able to face facts and act on them. His doctors had the sense to recognize that no more could be done in the way of treatment and had the honesty to tell us. Rick’s wife was determined to do right by him, whatever the burden of responsibility she was to bear. Our families were supportive of all her decisions and as loving and helpful as we could be.
Doctors must learn to let go-if there’s nothing more to offer the patient then nothing more should be done-let patients go home. We all should plan for this among ourselves-preparing our next of kin. Families, husbands, wives need not be fearful. If a family member is dying in a hospital and wants to return home, try to find the means to do it.
And to all of the nurses, doctors and social workers in hospices: continue to do your good work. You have the right idea.
