When doctors and healthcare professionals place a number on how long someone has to live, they are doing that person a disservice.
We have the right to be told about our disease, its progression, and the options of care and their expected outcomes. We need to know what the probability of our being cured is vs. the disease just controlled. If controlled, what does that mean? What kind of quality (physical and mental activity) will we have?
We also have the right to be told if we can’t be fixed, if our disease has progressed to the point it is not fixable. This knowledge gives us the opportunity to live and die in a manner of our own choosing, to address end of life issues, to put our house in order.
About the “not fixable” part; no one can be so specific as to say exactly how long someone has to live—with or without treatment. There are too many personal variables. When a number is given (6 months, a year) patients and their families end up carrying that number with them over the course of their illness. From that point forward the specific number will become a guide to how life unfolds.
Why do I say this? I’ll tell you a personal story. Even though it is personal, many people will have a similar story to tell if they think about it.
My mother was diagnosed with cancer of the lung: it was not fixable. The doctor told her if she didn’t have treatment, which she declined, she would be dead in six months. His bedside manners were clearly lacking.
When the sixth month arrived, she was sure she was going to die —during the ENTIRE month. “The doctor said six months, it’s been six months, I am going to die.”
At the end of the sixth month she agreed that maybe he was wrong. She lived 18 months after diagnosis. BUT think of the needless emotional turmoil, and yes, emotional fear that the doctor’s statement created.
Because people don’t have accurate role models on what it is like to die they think they are going to be alive one minute and dead the next. They don’t know there is a process so they often think that at the six month or year point mentioned they will suddenly die.
Imagine the fear of waking up every morning and wondering if you are going to die that day. When a number is put on how long life will be, that question is ever present.
When I think that is happening to a person with a life threatening illness, I respond, “If you can ask yourself, ‘Am I going to die today,’ then you most probably are not. The day that you die, you won’t ask and you won’t care.” Think of the fear that this simple statement reduces.
Something More... "Am I Going To Die Today?"
We don't talk about death or the dying process very much, which does us a disservice. Conversations are missed. Grief is more complicated. Regrets pop up. When we know what to expect, what we can do, and where we can get support, the experience can be more sacred.
New Rules For End of Life Care, DVD Kit is a my 25 minute, multi-award-winning film that addresses not only the behavior changes as they pertain to food, sleep, and withdrawal, but also pain management and the use of narcotics, addiction, and overdosing. Many begin watching with shoulders high and finish the film feeling relaxed and better for the education.
8 comments
I am a 91 year old woman. I am losing my sight and hearing. Still functional
Walk without a cane and do yoga 2 times a week and try to walk every day. But I am home bound and my daughter checks in most days. My only outing is to the grocery store. I am very isolated in the country. I am not a hobby person but I do read and watch television. I have a small garden that I no longer enjoy.
I feel I am on my own death watch. Just waiting to die. Everyone I cared about has died. And I wonder if my family is just waiting for me to die. I am well treated and grateful but my purpose in life is just existing
For someone like me who had an active life, just sitting and waiting to die is hard. I just see no point at this time. I am not depressed just want to find some meaning in all this. I shower and cook and clean. That’s my life now. Not handling it well.
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BK Books replied:
Hi Lori, what you are describing is oh so normal., sad for us senior people but very normal. As we age and our abilities shorten we grieve our losses. The challenge becomes finding new interests BUT generally the enthusiasm and desire for new just isn’t there. Our circle of life is getting smaller. It sounds that you are active just not as active as you used to be. Try to find meaning in each day. My bedtime question before I go to sleep is “What was good about today?” Sometimes it is seeing a bluebird at the feeder or watching a bumble bee search the flowers. These are activities we generally don’t have time for in our busy lives. Now there is time. Blessings! Barbara
Thank you for this. On another note, have you ever written your opinion on death with dignity laws? I wrote a paper on them for school and found my work as a hospice chaplain over the years giving me great sympathy for them.
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BK Books replied:
Dave, Thanks for your comments. I have not written about MAID. Blessings to you in the work you are doing. Barbara
I’m an End of Life Doula aka/ death doula. I remember my client asking me that question: How long do you think I’m going to live? My response was I don’t know. I have noticed you are losing weight, having more difficulty walking and you’re taking stronger medication for pain. What do you think? Without hesitation she answered: “I think a month” and started crying. I asked if I could hold her and she said something like “yes, please”.
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BK Books replied:
Hi Holly, I’ll also ask “What do you think?” That gives a direction to the conversation. Blessings to you in the work you are doing. Barbara
I found this very powerful. My Momma died nearly a month ago. When she received her diagnosis in January she was told she had a matter of months to live. She lived 8 more months the way she wanted. People traveled half way around the world to visit a month before she was sleeping most of the days. This is my first experience of watching the stages of death. It is very difficult. It was difficult for my Mo.ma and me and my siblings. Now after months, I truly feel empty, without purpose almost. Your readings are helpful. Thank you 😢
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BK Books replied:
Hi Lynda, thank you for sharing. Blessings! Barbara
Robert Twycross came to provide a week long Palliative Care and Hospice training for Indian Health Service healthcare providers. One of the jewels I took away from the training was when he told us don’t give them a number, give them a tool that will help them see for themselves:
If you are seeing change/decline month to month the person probably has months left.
If you are seeing change/decline week to week the person probably has weeks left.
If you are seeing change/decline day to day the person probably has days left.
Over the years, I have shared this with colleagues and caregivers alike. It is much more useful than assigning someone with the “normal” trajectory of the disease.
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BK Books replied:
Hi Mary, thank you for sharing Robert Twycross’s words with us. Blessings! Barbara
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