Cancer Diary: The Hospice Promise and the Hospice Dilemma

 

Choosing hospice is choosing to die. That may sound like a stark statement, but it is, in my experience, a true one. Now, when confronted with cancer, one can choose to live at home, not receive treatment, and not be in hospice--at least, for most of the course of the disease. That is what my sister-in-law did. She chose to die naturally and not fight nature, in part because she had no insurance (and did not want to rack up major debt for her husband or jeopardize their life savings and house) and in as much part due to her religious beliefs. She did go on hospice during the last six weeks of her life; she needed medical attention, and the hospital, to which she was ambulanced, moved her to in-patient hospice as a compromise. She was placed in a very nice New Hampshire hospice, Hyder Family Hospice House, known simply as Hyder House. Not all hospices are this attentive, gentle with the family, well-appointed in interior ambience and amenities, or surrounded by such beautiful landscaping, but many are. Still, the point of hospice is to provide care for those who doctors believe will die within six months.

Choosing treatment is choosing to fight. Following the prompts of Dylan Thomas, patients who choose treatment "do not go gentle into that dark night" but rather "rage against the dying of the light." Along with it, they choose the angst, lack of in-home support, caregiver fatigue, hope, and disappointment.

If patients choose hospice, they usually cannot get routine cancer treatment, such as chemotherapy, and often, even, though not with all hospices, they are required to agree to a DNR (do not resuscitate) advance health directive. If they experience a crisis, they must weather it, rather than calling for an ambulance. If they do request and get taken to the emergency room, they are then off hospice. While it is clear why insurance does not want to double-pay for care (hospice and hospital), most frequently this boils down to a choice for hospice is a choice against treatment and a choice for treatment is a choice against hospital.

But why does this forced choice have to be? Why not allow patients in a hospice to continue to get life-extending treatment even if the extension might be just a few additional weeks? Or, alternative, why can our society not provide in-home support for family members who are turned into full-time highly stressed-out caretakers with almost no place to turn. Janice Snyder describes this situation well, with lots of really good suggestions, in Survival of the Caregiver. 

There is a gap in support here. It needs to be filled!

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Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness; updates and additional information are added every week. 

As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story, "Cancer Diary," which will also be open to guest posts.