I wish this were an easy answer, but unfortunately there are countless reasons why people have so much trouble dying. There are a few things that I am fairly certain about and that I have found that resonate with patients and family members. More often than not I find that people really DO have a difficulty with dying. Whether it be fear, denial, anxiety, or just avoidance, there is an underlying difficulty with dying.
Many people aren’t so much afraid of being dead, as they are of dying. I say this with intention, and I offer this to patients, in order to make a distinction. I have read in numerous places that it is best to think of living until we are dead. If we don’t then we could get depressed or think that our life is over as soon as we admit to dying. Think about it this way. “Dying,” an active tense word, is very different from the words like “dead” (adjective) and “be killed” (passive tense). There is no passive tense of “dying.” It is active, and so there for something we DO. It is something we live in, participate in, and include others in. So how do people want to go about their dying time? This is a good question to ask of people and to reflect on ourselves. We don’t just live until we are dead. These are the people who want to go out in their sleep or want to end their lives prematurely. There is no active participation in their dying there.
For many, unlike our ancestors, being around death and dying can be a very foreign experience. It used to be that loved ones would die at home attended to by family members in the upstairs bedroom. Now it is so often in a hospital or nursing home behind closed doors. The announcement comes from the RN or the doctor and the family comes in after a person has died. So many are not familiar with the signs of dying. They think a dying person may be on the road to improvement when they wake from days of sleeping and not eating and want to tell stories. These moments of clarity are often part of the dying process. Dying also is a very personal experience, different for each person, and something that each person can only go through once. If a dying person doesn’t share what it is like with their loved ones, they offer little of help to the next generation when it is their turn. But people are afraid of causing too much hardship to their loved ones by talking about it too much.
Dying in the hospital is very difficult because health care professionals are trained to cure, to heal, and to “fix.” In and of itself, this is not a bad thing at all. But when it comes to dying, there is no “fixing.” I have heard doctors say that having a palliative care team meet with a family is “giving up too early.” I have seen many many times doctors and nurses shy away from using the “D word” with families when the writing was clearly on the wall. Many will say a person who is accepting their dying is “giving up” or someone who is feeling sad about saying good bye is “depressed.” Too, too often do doctors trying treatment after treatment until a patient, who wants to die at home ends up unconscious while still hoping along with their family that they are going to “pull through.” Or a patient holds off going home on hospice because a doctor or social worker feels trying out rehab first might be good, only to die the next day at the nursing home. I tell patients if they want to be an active participant in their dying experience, join hospice while they still have the capacity to choose for themselves.
If we can just begin to see how much death is a part of life. Dying is not a “bad” thing. It is a beautiful, sacred, natural thing. Not to say it is a “good” thing either. It just is. It is part of what happens to all healthy, mature, and connected to the earth beings. Going from living to dead is going around this natural process. As Stephen Jenkinson wonders, “How connected is someone to their life when they have to be told they are dying?”
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