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.