In my mid-twenties I was lucky enough to find myself immersed in a midwifery milieu, party to daily conversations about umbilical cords and breast latching and hospital transport. It was as good an introduction to the mechanics of birth as I can imagine one can get, and it served me well during Oliver’s adventurous one.
From my midwife friends, I learned about how we are born.
Now, thirty years later and with my compañera in palliative care, I’m learning a lot about how we die (or, fortunately and happily right now, how she doesn’t).
After an unexpected stay in hospital in the summer of 2016, Catherine enrolled in Prince Edward Island’s Palliative Home Care Program.
To that point in my life “palliative care” was, in my mind, a euphemism for “will be dead by Wednesday.”
“She’s gone to the palliative care,” someone would say, in hushed tones; and everyone in the room would take a short breath in, and nod in sad agreement.
I was happy to learn that this is not what palliative care is at all: three years later, Catherine is very much alive, and the palliative care program has been a tremendously positive help to her and to me and Oliver.
This passage, from Advice for Future Corpses (and Those Who Love Them), is a succinct explanation of what palliative care is and isn’t:
Palliative care is the specialty focused on comfort and quality of life in people with chronic and terminal illness, even while you seek a cure, even if you have come to terms with dying. (The cartoonist Roz Chast proposes “extreme palliative care,” which she thinks could include all-you-can-eat ice cream parlors and heroin.) I wear my bias on my sleeve. I believe in palliative care for anyone with a serious illness, and I know that palliative care can provide the support needed for a good death. Yet palliative care receives a laughably tiny fraction of the money spent on medical care.
One of the good physicians with whom I work keeps a cartoon on her office door. The doctor is talking to the patient, gowned and barefoot, sitting on the exam table: “You’ve got six months. But with aggressive treatment, we can help make that seem much longer.” No system is perfect, but a good palliative care program can make an enormous difference in a person’s life and death. The care given is interdisciplinary, which means that alongside the doctor and nurse may be social workers, chaplains, and physical, occupational, and speech therapists. Palliative care is concerned with everything that affects the quality of a person’s life, which might include treating the headache and going to the emergency room with a sprained ankle. This is all offered while you cope with cancer or heart disease or whatever brought you there. It may include help with bathing, visits to the eye doctor and the dentist, equipment like hearing aids and orthopedic shoes and walkers, recreational and respite programs, and visits to specialists.
Palliative care has a broad scope. Programs can be specific—for people in treatment for cancer—or general, for anyone with a chronic illness. A person in liver failure may benefit greatly from it while waiting for the transplant that will cure the liver failure. Cancer patients getting chemotherapy do better in treatment with palliative care because the team can help with symptoms. A program may offer acupuncture, help solve financial issues, sort out family dynamics, and design an exercise program—all while the person is trying to get better. My immense textbook calls this “active total care.” You can have palliative care while you’re trying to live, and you can have palliative care until the last hour of your life.
Our experience of Prince Edward Island’s program has been almost universally positive, and the integrated network of nurses and paramedics and the services they offer Catherine have kept her out of hospital more than once, have provided her with advice and insight that she wouldn’t otherwise have, and have reduced the cost of her medications. It’s a remarkable program that we feel blessed is available.
Generous of you to share your experience so that others might understand and take advantage of this care. It sounds like such a boon