End of life decision making is hard. End of life conversations are hard. They require, among other things, acknowledgement of the inevitability of death. In American culture, we are often not comfortable with that, even in the last precious moments. I have had these conversations with my children since they were adolescents. They know if there is no hope I can be myself again, I don’t want any extraordinary measures taken. They know quality of life is more important to me than quantity of life. They know I wish to be an organ donor. They know I wish to be cremated. We have negotiated where my ashes will be spread when they’re ready to spread them. I hope that when the situation arises, this knowing will make things easier for them.
End of life is a personal matter for the person dying. It is also a community matter, a family matter, one that impacts and is influenced by loved ones who will be left behind. Dying happens in relationship, and the members of those relationships often have very different outlooks. In relationship, some are more or less ready to let go than others. Some are clearer on outcomes, more realistic about expectations. Some hope for miracles, that things are not as bad as they seem. Some hope that something can yet be done. Some have strong beliefs and preferences. Health care providers are often less helpful than they could be about prognosis at these times, or, perhaps, loved ones hear, in providers’ words, what they have the ability to hear.
Death happens in relationship.
My father died over a decade ago. The memory of his last days is still as vivid today as it was then. For the last days of his life, all five of his children were by his side. My brother fixing things around the house, my sisters and I taking turns caring for Dad with in-home hospice support, all of us supporting Mom.
Because I could, it fell to me to have the end of life conversation with my Dad. Dad was already in hospice care, so extraordinary measures were no longer a question. What he wanted after death was. It was hard to make myself have this conversation. It felt final, like an acceptance of his inevitable passing. My heart hurt. But I believed it was important. I believed that if he had desires, they should be honored if possible. I’m a crier at the best of times, and I didn’t want to cry when we had this talk. I finally decided that my crying didn’t matter and that I would do the best I could.
One afternoon, when he was having a good day, a particularly alert, pain-free moment, I climbed up on the bed next to him. “Dad, can I talk with you about something?” I asked. “Sure, honey”, he said. “What would you like to have happen after?” I asked. He seemed surprised by the question. “After what?” he asked. “After you’re gone”, I replied, stroking his hair. “Would you like a funeral Mass? Would you like to be cremated or buried? Would you like to be buried here or in Westfield (Indiana, his birth home)?” “Do you think we need to talk about that now?” he asked. “We can… Or we can wait… Whatever you want…. I just wanted to offer you the chance to tell me if there’s anything particular you’d like.” “Well, I haven’t thought about it.” he said. I waited, quietly. “Well,… I asked Dick to be a pallbearer… So buried, I guess. I never thought about cremation… I don’t want to be far away from your Mom or Jennifer, so I think buried here is best… I’d like a 21 gun salute and the presentation of the flag at the cemetery. And I’d really like you to sing “Bridge Over Troubled Water” at the funeral. Aside from that, it’s up to you all.” “Dad, I don’t think there’s any way I’m going to be able to sing at your funeral.” I laughed. “I can be the lector at your Mass, though and do the readings. Would that be ok? I promise I’ll find someone to sing for you.” “Ok. I hope we don’t have to worry about this for a while yet”, he said. “Who do you want me to notify after you pass?” I asked. He listed family and friends, some old co-workers. “I think your Mom has all their numbers”, he answered. “Ok.” I said.
The first question was the hardest. As the conversation unfolded, each question got easier to ask. We got more comfortable talking with one another. We still held these issues in the realm of the future, even though it was clear that the future would not be long in coming. I snuggled into his side for a while longer. We were just quiet, together.
Later, I told my mother, sisters and brother what Dad had said. I asked if there was anything they wanted to have happen. I asked if anyone wanted to help me plan things. I made a list of who I needed to talk with and did some preliminary research on funeral homes. I talked with his parish priest and with people at the cemetery. We contacted the military to see what was needed in order to plan the 21 gun salute. We made a list of people we needed to call with phone numbers. I asked Mom who she wanted to call and who she wanted me to call.
When Dad passed, we moved quickly. This was not an easy time, but it was easier because we all knew Dad’s wishes and everyone had been able to have input into planning his funeral and burial. My task was simply to carry out my Dad and our family’s wishes to the best of my ability.
Having had this conversation in advance saved distress and disagreement after Dad’s death. Had we tried to make decisions then, without knowing his wishes, I am certain our heightened emotional state would have made things much more difficult. As it was, everything went smoothly and according to plan. I was lector for Dad’s funeral Mass and selected the readings myself. A young woman with a lovely voice sang “Bridge Over Troubled Water” as we left the church for the cemetery, where Dad received the requested 21 gun salute, and Mom was presented with the American flag.
Because death happens in relationship, end of life conversations are important. Not easy, but important. End of life conversations smooth the way for both the person passing and those left behind. Conversations that might not have happened otherwise can happen. Decisions that might be contentious later can be less so because the wishes of the person dying are known. I do not assume that all the conversations I have had with my children will prepare them for my death. I do not assume even that I will feel the same when the time comes that I do now. I do believe that we at least have a starting point for decisions, a roadmap should we never have the opportunity to revisit these topics.
In our culture end of life conversations are often awkward and uncomfortable. It helps if we can make them more routine. It makes it easier when we know a loved one’s wishes. End of life conversations protect the desires and preferences of the person dying and the feelings and relationships of those left behind.
Deborah's Deliberations 