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I happened upon the last part of the "On Dyig Well" program the day after the memorial service for my mother, who like my father had been in hospice before her death. I was grateful to hear this topic being discussed in depth; however, I must say that in all concersations I hear about hospice, there is a major issues that I NEVER hear brought up:

With hospice, for good or bad, you are bringing the moral, religious, and dying-preference views of your hospice provider into the equation in a very real and intimate way.

My father underwent hospice in the home during the last few weeks of a long and painful battle with cancer. Near the end he was delusional, disoriented, and (judging by the cries of pain) in great discomfort. We had had morphine prescribed, but the hospice person would let him have it only sparingly, pointing to both its addictive properties and the potential for overdose. Under the circumstances, neither seemed like an issue worth keeping pain medication away from my father. However, this particular hospice nurse and coordinator were very clear about their moral duty in this case.

Due in part to that experience, my mother was very careful about stating her wishes about hospice care to anyone and everyone upon learning that her ovarian cancer had metastasized into her brain. Even with this, however, my family found ourselves having to constantly negotiate (often unsuccessfully) with hospice about her care.

For example: In the last week of her life, our hospice nurses switched to having a ?thickened only? water policy, so that she would not risk choking. My mother did not like drinking it, saying she would be fine with choking, and was constantly requesting regular water instead. In addition, she wanted to wave off having anti-seizure medicine, because she was hoping that some natural cause like a seizure might claim her before the cancer had eaten away all of her memories and cognitive abilities.

The issues above stemmed from a differing opinion about whether insisting on thickened water only and a forcing of anti-seizure medication was ?life-prolonging intervention,? (my mother?s view), or that allowing regular water and no anti-seizure mediation was ?death hastening? (the hospice people?s).

Bedridden and weak, my mother lost both of these battles with the hospice professionals.

I do not mean for any of this to be taken as an anti-hospice argument; I am still a great believer in the concept and philosophy. I do feel however, that people should be more aware ahead of time that when hospice professionals are brought in, those people?s wishes, desires and views of right and wrong can compete (and sometimes take precedence over) those of the patient and the family.

posted 5 years, 2 months ago
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