Because of my years of hospice experience, I have no fear of dying. And I want to believe I will know when it’s time to let go. But do we ever really know how we will respond? Can we really be prepared to face our own death?
We often talk around death in the guise of preparing for it. We intellectualize it, philosophize it, spiritualize it and complete our legal forms. What other choice do we have until we are really facing death?
Nothing is real until it is experienced. So what initially seemed like easy black and white answers suddenly reveals many shades of gray, often surprising us. Facing our own death is a dynamic process, resulting in changes along a continuum. Our goals and definition of quality of life can take new forms.
For example, at this moment, I would not want treatment for an aggressive cancer. But if I was just told I was going to be a grandmother for the first time, would that change my decision? I don’t truly know. This is a common dilemma for many who “didn’t expect” the timing of a terminal illness. We don’t want to let go too soon…or too late.
The key to making the best choices is making truly informed ones. We must know what to expect regarding disease progression, management and expectations over time. Talking about the actual dying process is particularly critical in this conversation. If we omit it, we may contribute to uninformed decision-making, unnecessary fear, inappropriate utilization of futile care and a death for which we are not prepared.
If you have several medical issues, knowing the potential outcome of each may allow you to choose how you want to die. For example, dying of anemia or kidney failure may be more manageable or comfortable than dying of tumor growth or advancing dementia.
A lack of information leads to a lack of choices. And that lack of choice is why one-third of Medicare recipients spend their final 10 days in the intensive care unit, and why increasing numbers of people with cancer are receiving chemotherapy 2 weeks before they die.
They didn’t know they were dying, and they didn’t know they had choices.
You as a consumer must be willing to ask the difficult and necessary questions. We as healthcare providers must make sure we answer those questions honestly and compassionately. If you need help, go to my website, Pathways, to download lists of questions for you, your doctor and your family to consider. It is your right and your responsibility to ask.
You are the one who will define your quality of life, your goals and circumstances at that moment in time.
How you prepare for your own death is to stay informed. It is certainly not my job to tell you what you should or should not choose regarding your treatment and care. It is our job in healthcare to make sure that you never have to say, “If I had only known….”
Tani Bahti, RN, CT, CHPN, offers practical guidance to demystify the dying process. A RN since 1976, Tani has been working to empower families and healthcare professionals to enable the best end-of-life experience possible through education and the development of helpful tools and resources. The current Director of Pathways, Tani is also the author of “Dying to Know, Straight Talk About Death and Dying,” a book that SevenPonds considers one of the most helpful books on the subject available today. Founder Suzette Sherman says, “This is the book I will have at the bedside of my dying parents some day, hopefully, a very long time from now.”