Having received the diagnosis of stage 4 pancreatic cancer dad decided that his remaining days should be oriented toward providing him comfort rather than treatment. I had not heard the term (actively dying) before dad was admitted into inpatient hospice. It was a brief stay following his collapse at home. It seemed that he would have preferred and felt safer and more secure to stay longer; perhaps it was the supportive listening and personal care and attention they provided. Or the three meals a day he could have (if only he had an appetite). Or the audiences who came into his room and listened to him conversing fluently in various languages.

But the staff said that he was not yet “actively dying” and there was little (no?) need for him to remain on the inpatient hospice. Yet seeing the sad and fearful look in his eyes, the physician quietly mentioned that perhaps he could remain on the unit one more night. So he stayed another night and then we finalized the plans and arrangements for him to go home with round the clock home health aides.

And we came to learn that “actively dying” is used to describe the final phase of life and is/can be talked about or measured in terms like months, weeks, days or hours. Since dad was not “actively dying” it also meant that dad was not meeting acute hospice care guidelines.

So we also learned that even at the end of life, dad faced definitional and coverage issues that required us to navigate through the complex maze of payment/coverage challenges. We struggled to understand what was provided/covered by hospice; what was provided/covered by regular Medicare and what dad was responsible for. We faced decisions such as trying to locate a podiatrist who might make house calls (because palliative care physicians “don’t” cut diabetic patient’s nails)–(we never did find one); we searched for reliable, caring, and certified home health aides (because hospice “only provides/covers” a limited number of hours of home health care/day); and we filled prescriptions for certain medications (because some of the meds were for conditions not related to his terminal condition).

And in the end we couldn’t make any more sense of it than before.

Related posts:

1. Actively Dying
2. Signs and Symptoms
3. Dying to Give Life

This entry was posted on Tuesday, December 16th, 2008 at 6:29 pm and is filed under Caregiving, Coverage Policy, Medicare. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.