There is a culture that says it is better for patients to die at home, peacefully. My father’s palliative care doctor said that and I think he honestly believed that. My brother believed that my father died at home, peacefully.
There was the clear subtext, in the hospital, that if my father wanted to die at home, we, his family, could help him do so, with the support of trained nursing staff. They lied. Those nursing staff may have existed but I never saw much of them. The only thing they came in for was to handle pain management and even then I had to call and ask them to come. And then call again. And again.
My father was sent home from the hospital with a pain pump inserted into his spine. It delivered a constant dose of morphine over 24 hours. He wasn’t home even twelve hours before that level became inadequate. I called the nursing care staff. And called again. And again. They turned up eventually two and a half hours later to adjust the levels.
The new level? It lasted less than 12 hours before it became inadequate again. Again the calling, the asking, the begging for them to come. To see my father suffer like that and to not be able to help him was excruciating. His pain was never really got under control because he was riddled with cancer and there was no continuity of care. At the end he had tumours in the bone, in the bladder, in the bowel, in the lungs, in the face and in the brain.
When my brother said that he saw him as ‘at peace’, it was because I had begged the palliative care nurse for as large an extra injection of muscle relaxant, morphine and fluid secretion dryer as she would give, in addition to the massive increase in the pain pump dose. She asked me if I realized that it might hasten his end. I said I prayed most fervently that it would.
I took on that obligation and it was a blessed relief to see the pain lines relax, to not have to listen to his moaning, to see his tossing back and forth, to hear his tortured coughing. He gradually slipped into a shallow, and then deeper, coma, squeezing our hands slightly now and again.
Various members of the family dropped by throughout the day to say goodbye. I, myself, once I was sure he was out of pain (ie once I was sure that I wouldn’t have to bully and harass any more medical professionals into providing adequate levels of pain relief) went home for a sleep. I went back down in the early evening and talked my eldest daughter, the last grandchild to come, into going to see him. She was very reluctant and very upset but did eventually drop by for half an hour and she held his hand and said goodbye to him, even though he wasn’t responsive at all by this stage.
I walked her down to the lobby, came back up and the others were around the bed. I walked into the room and he took two breaths and died.
So, my brother said ‘peaceful’ and he was right. The doctor said ‘die peacefully’ and he was right. But the leadup to it was anything but peaceful and for my stepmother and myself it was gutwrenchingly awful. I feel incredibly traumatised by it and that is only the struggle for pain relief: I haven’t even touched upon the actual hands on nursing stuff that we had to do.
The whole medical profession misrepresent the situation and I truly wish I could have an in-depth discussion with somebody to find out if they do it deliberately or if they genuinely believe their own mistruths. Maybe dying peacefully at home is within the reach of some people but I think it unfair to represent it as a universal option.