Cancer Diary: Some Doctors Will Not Recommend Hospice until Too Late

 

I like to follow the blog of Barbara Karnes, hospice nurse par excellence. Much of what she has to say to hospice nurses about end-of-life issues in general apply to caregivers of cancer patients in particular. Her latest post, "For some doctors, it just isn’t in their tool kit to stop trying to treat," reflects our experience very well. Only when Carl fell and needed four people to lift him and get him to the hospital and x-rays showed complete take over by cancer of four major organs along with blood clots in his legs and lungs did the doctor suggest hospice (although he also expressed a willingness to continue treatment -- a different treatment -- if we wanted). We chose hospice, but the period of time was short. Carl returned from the hospital and went on hospice August 7. He died August 16.

I have always wished that the doctor had put the hospice option in front of us much earlier, perhaps even at the beginning of the 5-month period during which the doctor tried every which way to save him. The prognosis for Cancer of Unknown Primary is so miserably poor that a good sharing of that experience and research and information upfront, along with having us talk to someone like a hospice nurse who could have opened our eyes to the positive aspects of hospice and what having five meaningful, gentle months vs five rushed, agonized months could have meant both for the days of dying and the management of death. 

I know now what I will do. I wish we had had the same knowledge to make an informed choice for Carl. I think he might have preferred the option of the longer hospice term and the gentleness of shared quiet time, a much more satisfying way to say goodbye.

I highly recommend subscribing to Barbara Karnes blog. She has such good insights -- if only we had had them early on, instead of in the last two weeks of Carl's life!

See other posts on cancer treatment.

See other Cancer Diary posts.

Blog editor's note: As a memorial to Carl Don Leaver, co-founder of MSI Press LLC, and simply because it is truly needed, MSI Press 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. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story -- and be open to guest posts: Cancer Diary.     

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