If I stop treatment does it mean I stop trying? If I stop trying does it mean I’ll start dying? I don’t want to die. When faced with the above considerations, what decision do we make? How do we face the realization that “I am going to die”?
Most of us go through life with the notion that other people die, not me or anyone close to me. Yet for all of us, that bubble of illusion will someday break.
If we don’t die a fast death, by accident (no warning), we will die a gradual death from disease or old age. Either way, someday all of us will die. How do we prepare for that day? Do we or should we prepare for that day?
I don’t have a one size fits all answer to those questions. Each of us will prepare for our eventual (assumed gradual) death in our own way, according to our personality. Doer personalities will have their advanced directives and Five Wishes completed and filed away. They will have talked with their family and significant others years before that information will be needed. A procrastinator personality may never address their advanced directives even though they may have given it some thought. An easy-going personality ——it goes on and on. Think about who you are and how you are addressing your eventual death.
I have found that being old has brought the idea of death closer to my consciousness. How much longer do I have here? Does this mean my headache is really a brain tumor? I forgot the name of my old friend. Do I now have dementia starting? More of my friends are getting ill and dying. “How are you doing?” has become part of our conversations.
What I have learned in all the years of being up close, but not personal with dying and death is that everybody dies and most people don’t want to. I learned that we will die the way we have lived and according to our personality if it is a gradual death. I’ve learned we don’t die like in the movies and no one is ever “prepared” (for their own death or the death of someone close). I’ve learned that taking care of someone as they approach the end of life is different than taking care of someone who is going to get better. I’ve learned that most doctors are uncomfortable addressing the unfixable.
When faced with the option of no option most of us will try to find an option anyway, anything to the alternative of the finality of death. Example: Mom in the ICU, nonresponsive, on a ventilator, IVs, doctors asking about a Do Not Resuscitate order, and the family saying “Nooooo.”
I think the reason hospice gets their referrals in the weeks before death rather than months is because hospice implies death will come. We look for and hope for a fixable option because the unfixable option is unacceptable. Death is never okay for someone I care about, NEVER.
All this said, hopefully, we will take the opportunity to say goodbye, stop desperate treatments, accept comfort care, and use our time more wisely in this final chapter of our lives that we will all write.
Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year
While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, “The Little Blue Book” which changed the hospice industry.
End of life education materials for families and professionals – BK Books