A new phase
The hospice counselor came to see my sister the other day. It marked a new phase.
Two nurses and the oxygen people also came to show her how to work a portable oxygen “concentrator.” People were in and out of the house all weekend, marking the transition from palliative to hospice care.
The mass has grown to occupy most of her abdomen. It is uncomfortable for her to eat.
In Georgia, you need a master’s degree in social work or psychology to be a hospice counselor. You need to be a Licensed Clinical Social Worker. You can expect to make between $55,000 and $80,000 a year. There are plenty of jobs available.
In 2022, hospice care was a $34.5 billion industry in the U.S. It is expected to grow at a compound annual rate of 8.02 percent from 2023 to 2030. This growth can be attributed to the rising prevalence of chronic diseases among the rapidly growing American geriatric population.
According to Centers for Disease Control data from November 2022, approximately six in 10 adults in the U.S. are suffering from chronic diseases. About four in 10 have two or more chronic diseases.
And 100 percent of us are going to die.
This is not something all of us genuinely believe. A friend of mine, a lawyer of good character who is not hiding from a single person in the world, has the habit of saying, “When I die, if I die.” It is a mild joke. He is one of those good people who goes to others’ funerals. Because, as Yogi Berra reminds us, if you don’t go to theirs, how can you expect them to come to yours?
The hospice counselor explained that my sister was entering a new phase. By definition, her life expectancy was now less than six months.
Apparently you are not eligible for hospice care if your life expectancy exceeds six months.
“Expectancy” is a funny word. People have irrational expectations. We expect things to go on more or less the same way they always have for many years and decades. We expect what petty pains and aches we feel to eventually subside. We expect a regression to the norm.
The difference between palliative care and hospice care is subtle but real. Palliative care is for people with serious, chronic, or life-threatening illnesses. They do not necessarily need to be in terminal stages of their illness. It can be provided at any stage of a serious illness, regardless of whether the patient is receiving curative treatment. It can—probably should—be initiated at the time of diagnosis and continue throughout the course of the illness.
Its primary goal is to improve quality of life by addressing symptoms, managing pain, and providing emotional and psychological support. A secondary aim is to aid patients and their families in making informed decisions about treatment options.
Hospice care is for people who are dying. Curative treatments are generally discontinued. It means to provide comfort, dignity, and quality of life in a person’s final weeks and months. It shifts focus to addressing emotional, spiritual and psychological needs.
My mother was shaken when she saw that the hospice counselor had left for my sister some fentanyl patches. Her first reaction was that those are dangerous drugs, that people are dying from fentanyl overdoses.
They told my sister not to go to the ER if she had a medical emergency, but to come to them.
The goal is a “good death.” That has been the subject of philosophical inquiry for centuries. Epicurus would tell you a good death involves minimal pain and distress, that you should focus on achieving “at
varaxia” (tranquility) and minimizing suffering. Stoics like Seneca and Epictetus would say a good death is one accepted with equanimity and inner strength. A good death is one faced without fear.
Jean-Paul Sartre and Albert Camus would point out the absurdity of existence and argue that only by embracing one’s mortality can we forge a genuine engagement with life. A good death for Aristotle would be one reflective of the virtues cultivated throughout one’s life.
My sister is a Christian. She believes death is the beginning of a profound adventure. She says she is not afraid. I believe her. But I would be scared. I’m scared now, and sad, imagining the future and all it will take from us.
Being a good hospice counselor is a difficult job; it takes a lot to try to comfort and reassure terminally ill people and instruct them on how to use their oxygen tanks or apply their fentanyl patches. Terminally ill people might probably end up comforting their counselors and telling them it’s all right, there’s nothing wrong with being sad; it’s only the certainty of it all ending that lends this farce any meaning.
They would tell others to go home and hug those we love.
And maybe that would, in some messed-up roundabout way, help them to feel better about their own situations, because it allows them to put aside their anxieties in order that they might offer others comfort. And maybe by helping others, they’d feel a little better.
I feel like I’ve been writing this column for four years, forcing my words through a pinhole, that everything is dry and gray.
A little while ago my dog Savannah came to visit me; she jumped up and put her paws on my leg as I was typing. I absently scratched her head, and she snatched a golf ball off the floor and ran down the hall with it. I retrieved it and put it on the desk, out of reach. She sneaked back in and grabbed a Sharpie off a low shelf and ran down the hall with it. I got it and put it on the desk. She returned and took an Apple pencil. This is her new game, a new phase.
The hospice counselor came to see my sister the other day.
And on Monday morning my sister went to the warehouse where she works part-time, slapping mailing labels on pet supplies for one of amazon.com’s retail partners. A new phase. It feels the same.
pmartin@adgnewsroom.com