When my father was 93, riddled with cancer, chronically nauseated, and living on opioids he suffered a major heart attack. In the hospital, doctors determined his death was imminent but didn’t tell him. Dad denied his condition was serious. He was furious to be given a room on the heart ward instead of the ICU.
Dad had signed a DNR (do not resuscitate) and disclaimed extraordinary measures. But he changed his mind when push came to shove. He raged for two days until, at my request, a female resident physician sat beside Dad’s bed and gently told him the truth. Then he agreed to accept palliative (comfort) care. He needed to hear his time was short and he could control how it was spent.
Palliative care (with or without Hospice) can be received in a hospital, a nursing home, or the patient’s own home. This care focuses on comfort and pain relief. Surprisingly, comfort care often extends a seriously ill patient’s life beyond expectations, perhaps because it allows him to set his own priorities as the end approaches. He might continue to attend church, meet a new grandchild, participate in a daughter’s wedding, or celebrate a family holiday.
My friend Rita, whose cancer began in her ovaries, suffered through the debilitating side effects of five separate drug treatments, each with its own series of toxic infusions. When one failed, doctors said, “We have a stronger drug we want to try.” Not until the cancer had spread to Rita’s liver did they finally admit there was nothing left to try. If doctors had offered comfort care after the first two or three failures, Rita and Jim could have spent her final year enjoying friends and family instead of living life bent over a toilet.
All comfort care includes ample pain relief and medicines such as laxatives, appetite stimulants, nausea suppressants, medicine for anxiety or depression, sleeping pills, and oxygen. For those who qualify, Hospice services are covered by Medicare and include all medicine and needed equipment such as a wheelchair or hospital bed, nurses’ visits, two hours a day with a health aide for bathing, dressing, or feeding. Grief counseling is available to the family and patient.
But Hospice has some drawbacks as well as benefits. To be eligible a patient’s life expectancy must be limited to six months, though patients who survive longer are re-evaluated. The patient must sign a DNR. Like my Dad, many people are not ready to face the stark reality of impending death. Others may not want the Hospice doctor to become their principal physician. And most Hospice patients will require additional family or paid caregivers to cover their daily needs.
There’s an urgent need for all medical personnel to learn how to talk to seriously ill patients. Patients should be told gently but truthfully what to expect. A doctor should ask what wishes and goals would add meaning to their final days. And they should tell dying patients they can choose how to spend their remaining time.
If your loved one’s doctor doesn’t speak up, don’t be afraid to ask.
Readers might like Being Mortal by Atul Gawandi, and The Best Care Possible by Ira Byock.