Dr. Ira Byock, an expert on palliative care and end-of-life issues, recounts his first hospice referral decades ago:
"I called up the hospice of St. Agnes, and it was the first time anybody from this medical center, the county hospital, had tried to make a referral. You know, hospice was a countercultural movement at the time, Krista. It was a social movement often by nurses and others, but very few doctors, in response to people dying badly, often dying in pain, often in hospitals, too often alone. It has grown up and now been incorporated back into sort of the corpus of medicine, but its roots have been as a countercultural response. And we've made a big difference, though we're by no means done."
Important progress has been made in recent years, as Byock notes, but his observation that "we're by no means done" is also significant.
In many ways, hospice continues to feel countercultural, at least to many doctors and their patients.
Far too many terminally ill patients and their families remain unaware of hospice services or come to those services too late to achieve their full value.
Referral to hospice, in the eyes of some doctors and patients, means giving up rather than improving the quality of life, and in some cases even extending it.
That means that some patients and their families endure needless suffering as futile and expensive health procedures are employed in the face of the inevitable.
As a hospice volunteer, I have talked with patients who told me that their doctors actively opposed hospice care even when the consensus of medical opinion was that they had at best months to live.
There are two reasons why it is important to begin hospice care early rather than in the final days or hours of life:
1. Hospice care enables a higher quality of life. Palliative medical care addresses pain and other symptoms. The hospice interdisciplinary team supports the patient and family in addressing the physical, emotional and spiritual aspects of the illness, the dying process and grieving.
2. In some cases, hospice may enable a longer life as well as a better one. A combination of palliative and interdisciplinary care can extend life as well as enrich it.
What benefits have you or loved ones experienced because of hospice care?
This blog entry was written by Dennis Sparks, Arbor Hospice volunteer. You may contact Dennis by commenting below or emailing him at firstname.lastname@example.org.