“Comfort care,” he said. This was the choice my father made after the oncologist gave him his options, none of which sounded appealing. But at age 92 with stage four pancreatic cancer, he made the choice that he felt was the best for him. I could sense the shift in my Dad from patriarch to patient, still brave yet uncertain of the future, he knew that quality of life meant more to him than a greater quantity of time spent without good health.
It sounded good, the two words that anyone facing cancer without treatment would want: “comfort” and “care”. The social worker at the treatment center gave us her recommendations for hospice.
I set up the appointment. Little did I know that no matter which company we went with, even though “comfort” and “care” were my father’s priorities, hospice would sign us up to get the Medicare money, then do the least possible aside from assigning medications to keep my father “comfortable” with his pain.
When we called with questions or asked for help with getting the most out of staff visits, as long as they did the least possible required and met their professional duties and responsibilities, they really didn’t “care”.
The first month was like several holidays rolled up into one on the comfort care spectrum: Thanksgiving, Christmas and a milestone birthday. The visits flowed and the prescribed meds were available and seemed to work.
If we needed anything, staff would answer the phone, but as time passed, and, due to his diagnosis, things changed. The months that he had left passed all too quickly. If we did not micromanage and advocate for my father, nothing got done. I don’t mean “i’s” dotted and “t’s” crossed, but the basics.
Often we went into a weekend without hospice making sure that my Dad’s pain meds were called in by the doctor on staff to the pharmacy. Rare was their practice of giving us a better window for nurse’s visits other than just the day of the week. Unfortunately, this could also change without notice.
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Hospice did not excel at giving beyond “cookie cutter” care, either. His individual treatment constants with the visiting nurse consisted of blood pressure and temperature checks, followed by the nurse setting up his pain meds through the next week, and ended with the nurse fielding our questions with a cordial but tolerant attitude. They left us to deal with his suffering.
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My cell phone became my best friend. I made constant calls to the weekly visiting nurses or monthly social workers. The number of the pharmacy with its hours of operation was locked in and they consistently responded by keeping me aware of best practices for pain meds and were always kind when I asked for the status of my Dad’s prescriptions. And yes, I had on speed dial the name and contact information for the head nurse and for the owner of the company.
When all else failed to get a response, I followed up and demanded action. It seemed to be common that the business side of the hospice we had contracted with was far too often guilty of delivering empty promises as the close of the business day neared, especially on the weekend. Despite our need to rely on them, they routinely left critically important things undone.
It was trial and error on our part. We were experimenting and if we discovered something that worked for or didn’t help my father, then we would advance to the next level of hospice information, attention, and level of care in the form of stronger medication that he would require to dull the pain.
This all came under the umbrella of the hopeful promise and then the realization that this was what “comfort care” was. Coupled with the anticipatory grief I was dealing with, I realized that this would be as good as hospice would get. They would not need to do more, because he would not need it or them anymore. Hospice service was terminal like his cancer and would cease with the end of my beloved father’s life.
Was he comfortable “phasing out” as he called it, dying at home surrounded by loved ones? Perhaps, or initially, hopefully, or some other perfect word choice that addresses the imperfect range of emotions and changes we all went through last spring through the heart of the summer.
He was in familiar surroundings and surrounded by those he loved and who loved him. This was its own blessing and reward. But as time moved forward and his pain increased, hospice made sure they offered what they had, regularly after the fact or as a hit-or-miss result that our questions triggered in terms of their response. This was frustrating for us and often reactionary on their part.
Hospice did not provide us with a road map for how to make sure my father was comfortable and well-cared for (his now widow managed, coordinated, and tended to that). He was a number. Another visit that day to squeeze in.
Part of their census that rose and fell and meant a growing or declining caseload for the company that provided no more and no less for him with their hospice care business. They did not try to get to know him when he was less sick so they could treat him when he was less well. Maybe this professional distance is necessary to be able to do this kind of work: one could not get too personal.
He was not their father; he was mine and if I failed at everything else at this stage of his life, I wanted to make sure that I at least, often quietly yet firmly and without recognition or gratitude, advocated for him with them so that he would not slip between the cracks of their care. Suffering from cancer’s pain beyond measure usually did not follow a convenient 9 to 5 schedule. It did not matter how many other patients they had; my concern for “comfort care” was only for one.
