Many, if not most of my patients, if given the choice, said they would prefer to die at home. In fact, I’ve spent half my career as a hospice nurse sitting at the bedside inside my patient’s home. The other half of my career was spent at the hospice care centers, and a smaller portion at a person’s bedside inside their nursing home. I’ve spent many shifts at the care center coordinating with everyone involved, the hospice home team, pharmacy, equipment team, and transport, to get my patient who was rapidly declining, home. I was also involved in many continuous care cases in which I was the first hospice nurse on site as a person was transported home from the hospital. As you can imagine, the time spent beforehand at the hospital or care center involves expeditious coordination of doctor’s orders, deliveries of hospital beds, bedside tables, bedside commodes, supplies, and medicines. The family too, must work quickly to contact family members and friends willing and available to rearrange and remove furniture in order to make accommodations. In other words, a home death requires planning.
I remember one patient whose hospital bed was set up in their living room on the first night home from the hospital. His wife was going to bed for the evening, but first had requested that the lights be turned off because her husband, my patient, preferred it that way at night. I worked by the glow of my computer screen, or the small table lamp when more light was needed. In the early morning hours, around 2-3 AM as I sat writing my nursing notes, a small little voice said “hello, are you still there?” I placed my hand over his and assured him I was, and would be.
The more frantic and stressful times were when a hospital patient was referred to hospice services just as they started to rapidly decline and it became obvious to everyone that there was nothing left that could be done. When someone is actively dying things can progress quite rapidly as measured in minutes to hours. Making the necessary arrangements takes time, time that may make transporting someone home no longer an option. In those instances, I feel the family’s frustration of not having a better ‘heads up’. It’s hard to tell sometimes if the reason for the hospital or hospice unit admission is for a symptom to be better managed, as in all the other times this has happened, or if this is the time that the symptom became just one too many for the body to bear, thus triggering the rapid decline. Families know this emotional rollercoaster ride only too well, where an incident which leaves everyone thinking this is it, develops into the person pulling through to live another day. You get used to it, it becomes the new normal, so when the time does come that the person cannot pull out of it, which will come, it becomes like the boy who cried wolf, and there is disbelief and resistance that ones loved one can actually be dying. I’ve had many family members tell me “ oh, this happens all the time..” and I’m left telling them that no, this really is the ending they had thought would still be months away. I liken it to a Jenga game, where there comes a point when the frail balance of ones’ illness tips, and the body just cannot recover.
So, when I saw this chart I was struck by how much of a difference, in most cases by over half, of what a person states where they would prefer to die vs where they are most likely to die. Was it simply coincidence that for those who chose to die using hospice services the numbers closely matched what would most likely happen. For those who preferred to die at home, how many thought they would end up dying somewhere other than home? Sadly, the answer is over half. Think about that as you think about what you want your death to look like. Talk about it, to your family and to your doctors. Make those arrangements early on so that you will have the better odds of dying where you want to be.