“Please – do everything you can.” Working in the ICU as a physician-in-training, I heard that phrase a lot when I delivered bad news to patients’ families. Their pleas that we use every measure to save their loved one were understandable, of course; but, in many cases, as a doctor, I knew that “doing everything” would likely subject the patient to unnecessary tests and needless procedures, and possibly even pain.
In these circumstances, I tried to nudge the families to put limits on their loved one’s care – to weigh their loved one’s comfort against the likelihood of a positive outcome. But this was back in the 90’s – end-of-life issues weren’t really talked about much then and hospice care/palliative medicine still wasn’t widely available or well-known, so most of the families stuck to the “do everything” plan. Doing anything other than that felt like they were “giving up” on their loved one.
To be honest, I wasn’t that familiar with hospice back then, either. I knew it in name, but didn’t really know how it worked.
But, a few years after my training, I learned about hospice and palliative care in the most personal way – and it profoundly changed me as a doctor and as a person.
My father was a hard-working and healthy man. I don’t think he spent a day of his life in the hospital. Other than the occasional run-in with an angry bee during a hot summer month, my father did not interact much with the health care system. But, sadly, just a few years after retiring, he developed Alzheimer’s. Unlike most people with dementia, he had a rapid decline. My mother was adamant that he would never go into a nursing home, so she served as his caregiver. She managed all his appointments and medicines, fed and bathed him, and helped him preserve as much of his function as she could. When he contracted pneumonia and was progressively getting sicker, my mother made the decision to engage with hospice care. I wish I could tell you it was at my recommendation, especially considering all the conversations I had with patients’ families. But it actually was at the recommendation of my father’s physician – an astute man with probably half a century experience taking care of patients.
Though my mother did not actually know much about hospice when she made the decision, it was one of the best things she could have done for my father. Hospice allowed my mother and family to focus on ensuring my fathers’ quality of life without subjecting him to needless tests and procedures that would not impact his condition. The goal became pain management and comfort. Hospice provided comfort to my mother as well; it gave her the opportunity to talk to doctors and nurses who had been in similar situations many times before and could give her an idea of what to expect.
Like many people, my father’s time in hospice was not long. The pneumonia rapidly overwhelmed my father’s weakened defenses. I vividly remember standing around my father’s bed, with my sisters and my mother, holding his hand, talking to him, telling him how much we loved him, and repeatedly reading him the lyrics from the hymn “Safely Home,” which talks about the end of suffering. Sharing those peaceful, loving moments with him, and that knowing that his last days were spent in his own home, surrounded by his family, gave us great comfort when he passed away.
This experience with my father – seeing how much hospice had eased his passing – made all the difference when, sixteen years later, my mother tragically fell down the stairs suffering a massive head bleed. When I heard the news from my sister, I felt like I had been stabbed in the chest. I actually could not breathe for a few seconds – something I had never experienced in my life. It sounds like a cliché, but the pain was actually palpable.
I rushed to the hospital where my sisters were already present with my mother. Possibly stemming from her experience with my father, my mother had always made her intentions clear: “Johnny, promise me that when it’s my time, you’ll let me go.” I would always respond, “I don’t think I can do that.” I was serious – I really wasn’t sure I could do it. But every time, she would retort, “If you don’t, I’ll haunt you.”
So, when it was clear that there would be no hope of recovery for my mother, the decision was “easy.” We didn’t have to struggle trying to figure out what her wishes would be, since she had made her intentions clear, repeatedly. My sisters and my nephews did what we knew she’d want us to do – we surrounded her bed and listened to music she loved: her favorite church hymn, “I Am the Bread of Life” and Frank Sinatra’s “My Way.” It was profoundly painful for us, yet it provided the dignity to her that she richly deserved. I still occasionally listen to “I am the Bread of Life” – with its powerful refrain “I will raise you up” – just to take a minute to remember my parents. Hospice allowed me to have these memories, and I will be forever grateful to the men and women who provide hospice and palliative care.
For more information on hospice and palliative care, or to find care near you, visit the National Hospice and Palliative Care Organization's website or call the NHPCO at 800-658-8898.