Updated: Oct 5, 2019
The IV drip was steady and the alarms were audible; nurses were in an out as he screamed in pain. Along with his fractured back, the catheter was an obvious source of discomfort. His organs were failing, too.
“Your father is not a candidate for hospice, Tim,” the hospital doctor informed us when we asked to have Leo admitted into hospice.
Deep down we knew that he was dying. While still lucid, Leo made it clear that he did not want any heroics performed to prolong his life. But now here was this disconnect with his doctor, and we did not quite know how to handle it.
Curled in a tight ball on his hospital bed, we could literally see Leo’s tiny body shrinking over a short period of time. Despite our pleas, the doctor could only repeat, “Please give me a few more days to bring him around. Let me keep trying.”
His doctor not only seemed convinced that she could save his life, but that Leo could live for a good long time afterwards. To us, the doctor’s words indicated that hospice care at this juncture was the same as giving up on him. We just wanted him to be more comfortable.
That “good long time” was less than a week — one filled with pain, hospital noise and family anxiety. We were devastated by his death, our grief compounded with frustration because we decided to trust the doctor instead of advocating harder for a hospice referral.
Two days after Leo’s death, Norma was diagnosed with endometrial cancer. We never imagined that we would be having a hospice conversation again so soon. Norma wanted “no more poking and prodding” and she did not want any extraordinary measures taken to prolong her life, either.
We were committed to honor those wishes and asked her to come along on a cross-country RV adventure with us. To our surprise, she said “yes.” But we were concerned by what to do if Norma’s cancer progressed to the point that we were unable to care for her by ourselves.
“Wherever you are in the country, just call the local hospice,” Norma’s doctor told us just before we left town. “They will be able to help you,” With his assurance and our renewed confidence, we were certain that we could guide Norma through a peaceful transition.
About a year later, Norma’s health began to rapidly decline. We found ourselves exhausted, over our heads, and nearly 3,000 miles from Norma’s home. We went to the local hospital to get a hospice referral, bracing ourselves for resistance like we did from Leo’s doctor. This time it was different.
The doctor patiently listened to our story and did not judge or admonish us for our approach to Norma’s end-of-life care. Instead, she explained all of the ways hospice could not only help Norma, but also the two of us as we struggled to keep up with her increasing care needs. We left the building with a referral.
Support came in many forms: medical equipment; a visiting nurse; a home health aide; a spiritual counselor; a respite worker that allowed us to take breaks. Norma still slept in her bed in the back of our motor home and we still provided the lion’s share of her care, but there was definitely “no more poking or prodding.” Rather just the opposite. Ultimately, Norma was made comfortable enough to leave this world while at home and on her own terms, and the two of us were able to be at peace with the outcome.
We learned what we already instinctively knew, that a hospice referral is not be construed as “giving up” on your loved one. For many, it can actually be a life extender. Hospice is one of many topics that should be discussed when talking to your loved ones about their end-of-life wishes. This knowledge will help you become a stronger medical advocate for them when the time comes.
It did for us.
What Are Palliative Care and Hospice Care? – National Institute on Aging
Official Guide to Medicare’s Hospice Benefit – Center for Medicare & Medicaid Services
Find a hospice agency – Medicare.gov (This resource lets users search for hospice providers in their community and compare options)
End of life discussion resources
End-of-Life Conversation Resources – Samaritan Healthcare & Hospice
Conversation Starter Kit – The Conversation Project (This valuable tool offers guidance that can help families have open and compassionate conversations about their goals of care)
5 things you should know about end-of-life conversations – PBS NewsHour
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