Death and dying. Not the topic most people would choose to spend their Saturday discussing but that is precisely how I spent yesterday. I had the opportunity to attend a conference on palliative care at Sacred Heart University. Attendees including students and working professionals from across several disciplines including doctors, nurses, social workers, physical therapists, occupational therapists, speech pathologists, and hospital chaplains as well as caretakers and family members from the community. What struck me most was that one of the biggest obstacles to obtaining palliative care for patients is fear. In the medical community, there is fear that referring a patient for palliative care means giving up and that “it’s too soon” – an attitude which often means patients suffer needlessly. For families, there is a fear that the suggestion of palliative care means death is imminent, which is often not the case. While education can dispel the myth that palliative care is the same thing as hospice care (it’s not), I’m not quite so confident that it can easily dispel the fear.
In a breakout group that focused on the spiritual aspect of making end-of-life health care choices, the same theme came up over and over. Families are terrified by the prospect of talking about death, whether it’s at the beginning of a serious decline in health or when death is staring them in the face. In some cases, families will do anything to keep a patient alive, despite knowing that death is inevitable. Some families want to extend life as long as possible, holding out for a full physical healing miracle to happen. Their prayer can become so frantic that it is less about a relationship with God and more of a magic ritual. In such cases, families cannot seem to accept that the miracle may come in the form of a peaceful death. People who believe so deeply in a God who heals seem to struggle when it comes to believing in a God who is waiting to welcome their loved ones who will be released from their illness through death.
After listening to the war stories told by several of the chaplains and social workers, each one of them questioning how we change a culture that is so hung up on death avoidance, one of the young nursing students spoke up. She said that she’s of Finnish descent and in their culture, death is accepted as a unique part of life. Death is talked about and embraced as part of life from childhood. No one tries to hide from it or avoid it. People talk about their final wishes with family, including young children. She went on to say that her grandmother had called her last year to let her know that she had taken a woodworking class with another family member. The grandmother had designed and built her own casket and she wanted to make sure everyone in the family knew where it was being stored so when the time came, she could be buried in it. This is clearly a lady who is at peace with the reality that she will die one day.
I have to admit, as I listened to that story, the image that popped into my head almost immediately was of the third brother in the Tale of the Three Brothers from Harry Potter and the Deathly Hallows. (If you’ve never seen it you can watch the short clip here.)
The third brother didn’t see death a power to be wielded or as something to be conquered. Rather, he lived his life well, knowing that death was inevitable, and when the time came, he greeted death as an old friend.
If we truly believe in the God we say we believe in, the God of everlasting life, isn’t that the way we should live? Let’s be honest here, death is inevitable for every single one of us. Wouldn’t it make more sense to talk about it? Rather than kicking and fighting death all the way to grave, wouldn’t it be better to acknowledge that death will come? Wouldn’t it simply be sensible to plan for the care we wish to receive to keep us comfortable and to maintain the best quality of life for as long as possible, while knowing that quality of life is not about extending life as long as medically possible. Admittedly, it’s much harder when illness strikes a young person, but knowing that death comes for every single one of us, why are we so afraid to accept it, to embrace it, and to talk about it?
As tends to happen with a really good conference, the questions asked raised more questions to take home and ponder for awhile. The biggest question on everyone’s mind was: How do we change the culture? One point that every professional and every speaker drove home was the same one: We need to start talking about these things. We need to help people understand what end-of-life care looks like before they get to that point. And in order to do that, we need to meet people where they are, which for many is stuck in a fear of death and dying. I think, for many, ultimately the fear of death is not so much a fear of the end of life as it is a fear of what comes next. And for Christians, what comes next is a face-to-face with God.
At the end of the day, I went home and, in classic introvert fashion, changed into pajamas, brewed a good strong cup of tea, and curled up with a new book. Eleven pages in, I came across this:
“I was afraid to make decisions for my life that would lead to greater happiness because I was afraid I’d get it wrong and end up on the wrong end of God’s wrath…
For those of us who get stuck in fear, we reach a point where indecision is no longer a plausible option if we want to truly live. The months and years of running from fear and abdication our full engagement with faith and life have a way of catching up to us. Eventually the walls close in. The trail ends. The sun dips below the horizon. We reach a point where we either have to close our eyes and spend the rest of our lives pretending we’re not dying or we need to embrace a bold authenticity about who we are and what we believe. We need to embrace life itself.” [Benjamin Corey, Unafraid]
And it struck me that if we’re really going to meet people where they are when it comes to end-of-life care, we need to start talking about fear. Fear of illness. Fear of weakness. Fear of pain. Fear of dying. Fear of death itself. And especially, fear of what comes next. Because as Christians, we say we believe that God is love. And if we truly believe that, and if we truly believe that God walks with us through any illness, pain, suffering, and even dying, then we can trust that God will help us overcome our fear of talking about death. We can help our families to overcome their fears by talking about our own. And if we find that the fears people have are not just fears of dying but of God’s wrath, of hellfire and brimstone, then we need to start talking about that too. Because all of this fear is keeping people from living well and from dying well.