July 12, 2016
Every other week, our staff at Hospice of Missoula gathers for an hour or two to remember and talk about our patients who have passed recently - to honor them, and to support each other. At one of these gatherings we began discussing a presentation on death and dying that some of us had attended, and how we felt about those issues in light of that presenter’s views. There were maybe ten of us – a nurse, social workers, aides, a chaplain, myself. It had been my first time attending this group, as this position at Hospice of Missoula is new to me. I don’t know what I was expecting, but as the conversation progressed, I was surprised at how varied the responses were to the issue of how best to die. Surely, in a small group like this, whose daily profession is dealing with death, we must be fairly unified in how that best happens. Right? But not at all. It reminded me of a time when I was working as a pastor outside of Billings, and I presided at a funeral of a member of our congregation. He had been a wonderful man, and the church that morning was full beyond capacity. He had lived a long, good life, and while his death had been expected, it was still heartbreaking. At one point in my sermon I stated the fact that 100% of all people born die. When I said it, a woman began to laugh, not as if I had cracked a joke, but a nervous, uncomfortable laugh that she didn’t seem able to control.
It's odd, isn’t it? With 100% of people born dying for all of human history, you would think we would be experts at it, that it wouldn’t still surprise us, haunt us, confuse us, crush us, hurt us.
You would think we would be used to it.
At the risk of identifying myself as a geek, I love the Sandman comics by Neil Gaiman. In one issue, the main character Dream (he is in charge of dreams) is sitting with his sister Death (she is in charge of death) in a pub in the 1500’s. A guy at the bar, Robert “Hob” Gadling, is bellowing that the only reason people die is because everybody else does, and he refuses. Dying is a “mug’s game” and that the only reason people die is because they allow themselves to. Dream and Death decide to give Hobbs what he asks for. They call him over, inform him he won’t die, and as part of the deal they require him to meet with them every 100 years in that same place. From this point on, we see Hob at the 100-year recurring meetings. Initially, it goes great for him. He is rich, successful, happy. Then one year he shows up for the meeting skin and bone, skin covered with open wounds. His wife has died. His son has died. He asks Dream “Do you know how hungry a man can get? If he doesn’t die? But he doesn’t eat?” He confesses he has hated every second of the last 80 years. So Dream asks him if he desires the “respite of death.” Hobbs looks at him, smiles, and says, “Are you crazy? Death is a mug’s game. I got so much to live for.” And he shambles back out into the darkness.
My grandpa and I used to go hunting. His dog had to come, and the dog barked at pinecones, so really we just climbed mountains, stopping often to make a fire, brew coffee and talk. Once he said to me that when he got to the point that he could not do “this” - arms spread wide to encompass nature - anymore, he was just going to go for a last hike, sit under a tree, and let the end come. He was passionate about the outdoors, and I believed he would do what he said. Then years passed, and he got old. He developed heart disease. Then diabetes. He would sit four times a day, checking his blood sugar and injecting himself with insulin, swearing the entire time. But he did it. Without doubt, life had become what he swore he would not tolerate, but he did more than tolerate it, and he did more than walk into the woods and wait passively for the end – he lived, because he loved being alive. And at the end, he died in a hospital.
To say life is precious is cliché, but it is true. A condition or situation that we might speculate would make life intolerable and not worth living with can be found to be quite tolerable when the choice is to either live with it or cease living. I’m sure it is why, in the 30-some years hospice has been available in the US, one of the main topics discussed among its providers is, “How do we get people involved with hospice early in their 6-month eligibility, rather than people electing us when there are only a few days left?” That question was being asked when I worked as a hospice nurse twelve years ago. It was being asked when I was at a hospice convention in DC a few weeks ago. But it is not hard to understand. To elect hospice care, an individual or their loved ones have to agree that the care they receive will be symptom management (treating pain, nausea, wounds, etc.) rather than curative. And eligibility for admission to hospice entails acknowledging that whatever illness is at work, untreated, will result in the persons passing within six months. And there is nothing, nothing easy about such an acknowledgement.
It has been years since I have read Sandman, but during those years I have thought often about Hob, and about his decision to finally play the “mug’s game.” He fell in love with a woman, as he had so many times in his life, and this time he did not want to remain chronologically inert while she, as had so many others, aged and died in front of him. He wanted to take that finally journey with her. So he and Dream met as they had, and he gave up his immortality, so that he could age with the woman he loved. And thinking about that, I always wondered when, sixty-some years later when he was finally faced with the reality of being a breath away from the end of his hundreds of years of life, did he regret his decision to play the mug’s game?
However, while writing this column, I reread the comic, and he actually never made such a decision. The story ends with Hob in modern time, with a woman he loved, but so tired of life, and being offered the choice to finally die - but he says no. I was shocked. I remember my version of the story so vividly. And yet I had fundamentally changed the ending in my mind. But isn’t that what the topic of death and dying does? Even though it is one the few certainties in life, it makes every one of us uncertain. It leaves a woman laughing at a funeral, my grandpa dying in a hospital, and Hob unwilling to give up living even though he is tired of life.
Hospice can help with that uncertainly. While hospice is end of life care, our focus is not on death, but on life, and living it until there is none left. Our focus is also on hope. One of the first things we do with a patient and their family is discover what is it that they want to do with the life they have left. And it is astonishing what, when hope for a cure is replaced with hope for experiencing the best life possible, what people are able to accomplish, and what their families are able to accomplish. And that is exactly where we come in. Hospice of Missoula is a group of people who decide, as a profession, to stand with the individuals and their loved ones when the inevitable is on the horizon, to acknowledge it, and then simply do everything possible to help those we are involved with live to the fullest the life we are all so blessed to have.
May 14, 2013
Q:There has been a lot of media attention lately around physician aid in dying. Some people seem to associate it with hospice care. It is such an emotional topic. Can you help me understand how hospice care relates to physician aid in dying?
April 15, 2013
Q: Last week, a friend was glowing about the hospice care her mother is receiving, and she said that hospice has been caring for her for more than eight months! I thought hospice care was only for six months, so I guess I need more information. How long can someone receive hospice care and how does the hospice decide? Any information would be helpful, thank you, and I enjoy reading your column.
March 19, 2013
Q: My heart is breaking for a friend of mine who has recently lost her son. He died in a tragic accident and I am at a loss on how to support her. Our families are not extremely close, but our kids went to school together and of course this has all of us pretty shaken. I pull my kids in close at the end of the day and try to imagine how difficult it would be to lose any of them, and then how I would want others to show me kindness. Any advice would sure be great.