“What’s it like to die?” He sat in his wheelchair in the middle of the kitchen, looking to me as if I had all the answers. His wife sat nearby and gave a soft gasp of astonishment at his question. He had cirrhosis of the liver or liver cancer, I cannot remember which now. I do not remember the disease, but I remember him and his wife. And I remember that day and that question.
When I first went out to the home I knew his diagnosis was terminal. His wife and kids knew it too. But no one had told him. I was a bit surprised to find his family that naive. But it was too early in the relationship for me to explain to her that he had the right to know. When you are in someone’s home, especially in a professional capacity, it is a balancing act to earn trust.
In the United States, talk of death is traditionally avoided, as if by ignoring it, we can defeat it. And our desire to defeat it is evidenced in our constant battle to raise awareness about every terminal illness and find a cure. I would like to think it is because we love life so much but I suspect the truth is our fear of death. And we perpetuate that fear by not talking about it. It is not looked at as a part of the natural order of things but an enemy to be fought against.
When I first started nursing 29 years ago, I had never heard of living wills and advance directives; the right to die idea was just starting to take hold. I wish I could say that we are more enlightened now, but that is far from the truth.
People are brought in to the hospitals every day, with nothing in writing and no one appointed to make decisions for them. They have not told anyone whether or not they wish to be hooked up to machines or fed through a tube if there is no hope of recovery. And the burden then falls to the family to make that decision and many of them feel guilty, as if they are being asked to kill their loved one. Even though they may know intellectually that it is the right thing to do, it tears them apart.
On the other hand, there are those who have discussed it with their family, who have made it explicitly clear what they want done and do not want done. They have put it in writing, made their own funeral arrangements, done everything they can think of to prepare for the inevitable. When their time comes, the family is still sad, but they can grieve the loss of their loved one rather than wrestle with decisions, uncertain what to do. If a decision is left to be made they are fairly certain what their loved one wanted and they do not suffer from guilt.
As you learned from yesterday’s blog, even with everything discussed, a nurse who has seen the ugly side of prolonging life in terminal cases, the decision was still a hard one to make. If your elderly parents have not filled out their own Advanced Directives, perhaps it is time to have a conversation with them. They may find it a relief to talk about it.
Tomorrow my answer to the question, “What’s it like to die?”