Navigating Palliative Care: A Caregiver's Perspective on What Went Wrong
As the wife of a man with a long history of heart failure, navigating the health care system was often confusing and foreign. This is my story, and I apologize ahead of time if it is hard to read, because it is a painful story. My husband was a good and loving man, father and grandfather, and a hard worker. I watched the illness take its toll over two decades and wondered how we would all manage his care, given his increasing hospitalizations and medical appointments. My husband and I would ask each involved doctor and specialist what we could expect ‘in the future’ but would often get glazed looks or vague answers that would leave us confused and vulnerable. I was left thinking that my husband was just a “set of symptoms to be treated” by various specialists whether it was in the hospital, in a clinic or in a doctor’s office. Did they ever see the whole person? Did they understand the needs of the whole family?
In my husband’s final three years of life, he was hospitalized once for six months, and regularly saw internists, cardiologists, or heart failure specialists. It was difficult coordinating my husband’s information with each new medical face, and often our family doctor only received the summary report. Only a year before his death, he was able to take a short vacation out of country when his symptoms finally stabilized long enough to get insurance. And this was always the confusion. How could my husband look like he was so close to death at times, and then slowly emerge again into a “well period”. But it never lasted, and the sickly periods were increasing, often lasting months.
Three months before his death, my husband’s symptoms changed dramatically. He barely ate or drank, his mobility was severely reduced, and, ultimately, he spent most of his hours in his bed. A final hospitalization occurred when he fell unconscious to the floor, hitting his head, and requiring an ambulance to transport him to hospital to address this latest issue. My husband’s heart was barely pumping, and his kidneys had failed. It took eleven days to get him to the point of discharge, with treatments to get his kidneys functioning and take off the excessive fluid build-up from his poorly functioning heart. I, as his wife, and our children told the attending nurses and doctors daily that his symptoms were that of a dying man, and we needed help in planning for his care in his final days at home. But no one listened. My husband was never given the diagnosis of ‘palliative’ from the hospital. Apparently, he did not meet the criteria as he had received treatment to get his heart and kidneys functioning in those eleven days. The discharge summary did not indicate he was in dire need now that his body was functioning. We couldn’t imagine it was one or the other: medical intervention, or palliative care. How could it be? This lack of diagnosis created a domino effect and while we were given minor support from our local LHIN and an out-patient clinic, our requests for palliative type supports were never granted – because a physician didn’t diagnose him as dying. Less than a month after discharge, my husband died in pain and discomfort at home.
I remember sending visual photographs of his limp and weeping body to the family doctor by email five days before he died. Quickly, the first medical home visit was finally made and on the morning of his death, he was given a green light for round the clock care. Sadly, he died just hours before these services could be put in place. My husband’s final resting place was a hospital bed in our dining room. A son-in-law and a neighbour literally dragged his limp and ragged body from his own bed to the hospital bed, so nurses and doctors could have better access to him.
Our family has been left to struggle with many what-ifs, but mostly what could we have done differently? As months have now passed since his death, it appears that I simply did not have the education and information I needed, to know what to expect from our medical system. I was not aware how important it was to have a medical doctor write down in a report that he was palliative. It seems so simple now. Even as I write this, I still do not know who was really in charge of my husband in those final months, since he had seen a multitude of doctors and specialists. I did not feel I had a central person to reach out to, and I so wish I had. I write about his story, in the hopes that there will never again be a dying loved one who has to face anything other than a good death. We all deserve that. Good palliative care, whether it be in hospital, hospice or home, is a human right.
