Barbara, What are the pros and cons of telling someone how long they have to live?
My mother’s oncologist told her she would be dead in six months if she didn’t have chemotherapy. I suggested she not have chemotherapy for the particular type of lung cancer that she had. Chemotherapy would only address symptoms (which were not present) and the side effects outweighed any possible benefit.
Mother followed my advice and lived for 18 months after that conversation BUT when the sixth month came she waited the entire month thinking she was going to die---because the doctor had said she would die in six months. Is there a moral to this story? I’m not sure but it does point to an issue with telling someone specifically how long they have to live.
There are so many dynamics to dying from disease or old age that we cannot possibly be accurate when putting a number on how long someone has to live. The closest we can try to get is months, weeks, days or hours, so beware of numbers.
Now the question arises do you tell a person that they can’t be fixed; that medical professionals can do no more to keep them alive; that at some point, sooner rather than later, that person is going to die? This is a question I am asked frequently, “Should we tell Grandma the doctors can’t fix her?”
We tend to want to protect the people we care about from the harshness of life BUT who are we to presume we know what is best for another person? Isn't an adult entitled to the truth of their experience so that adult can make decisions for themselves as they deem fit? If people are protecting us from the harsh realities of living, who can we trust? Who can we turn to for the truth?
I often ask the family member who is having difficulty with the concept of telling Grandma what the doctors believe, “If it were you in your grandmother’s situation would you want someone deciding what you could or couldn't deal with? Don't you want those closest to you to be the people you can trust to be truthful with you?” As an adult, Grandma has earned the right to make her life and death choices based on real, honest information not someone's ideas of what she should or shouldn’t be told. We can't make the best choices for ourselves if we don't have accurate information. A part of our society's problem is we think we know what is best for others based on our own beliefs.
What are we gaining by denying someone we care about the truth? The struggle? The decline will still occur. The fear of where life is going will still be there. Confusion about why she is declining vs. getting better will present itself although it may not be verbalized to anyone. Because we live inside of our bodies on some level we suspect the truth and eventually that suspicion is confirmed.
By deciding not to tell someone the truth of their prognosis aren’t we denying them the opportunity to put their affairs in order, to say goodbye, to look at life from a different perspective, to prepare themselves?
There are pros and cons to telling a person they can’t be fixed. I've touched on some of them. I don't know the "right" answer. I do know that we will figure it out for ourselves at some point. From there we may continue playing the game and be alone with our fears or we may verbalize our concern.
No one knows exactly when someone is going to die. We can know they are going to die sooner rather than later. We do know that eventually a person will know they are dying whether or not they are told. Once a person knows the truth of their end of life situation, isn’t how to live the best we can until we are no longer living the most important decision that we, the family and friends, can help with?
Something More about... Should I Tell? Discussing Terminal Prognosis
When my step father was diagnosed with lung cancer I wanted to help him live the best he could within the confines of his disease. So I wrote the booklet, A TIME TO LIVE, my palliative care resource for those facing a life limiting illness. If you know someone in a similar situation, this is the booklet to use. I would also suggest the End of Life Guideline Series for their support system.
8 comments
Love you Barbara.
Wishing you and your family Peace, love and happiness.———
BK Books replied:
Thank you Anna.
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BK Books replied:
Hi Stacie, so many of us have words left unsaid. You might write your brother a letter and put those words and whatever else is in your heart on paper. Burn the letter and scatter the ashes to the wind. Blessings! Barbara
The hardest thing for me was being told my brother had 2-3 months left to live and it only being 3 weeks. Sadly, the state of my denial, and thinking we had more time kept me from sharing more conversations I should have had with him sooner. I wish I had more guidance of how to share our last few days together!
I’ve read, and reread, all your material. When my significant other was in hospital, a treating doctor said he had 6 months to 1 year but wasn’t in danger of dying any time soon. On that same day, Bob had been told by a different pulmonologist who examined him that his treatment was succeeding. He died that same evening & the shock left me questioning so much, including care from yet a different doctor on duty that night. The evening doctor changed Bob to comfort care & without the pulmonary assist to keep his lungs clear of mucus, he didn’t have a chance. He didn’t want to die & told me that day he was giving it a good fight. He had been hospitalized at the height of COVID & visitations for the two plus months he was there weren’t permitted. However, on Bob’s last day, restrictions were lifted & I was with Bob for hours. I’m still struggling with what happened however & have been a doctor’s care for this last year.
I frankly suspect something amiss with the evening physician attending at the time. It was 2nd time I questioned that physician’s actions (He discharged Bob days after Bob had been admitted to an interim nursing facility when Bob still had severe pneumonia; nursing facility immediately sent him back to hospital). On Bob’s last night, Hospital couldn’t reach me with their 1 call (I was outside giving my dogs a needed break) & I didn’t get to be with Bob. Based on what I’d been told, I didn’t suspect this would be his final day. When I challenged evening doctor, he said Bob was suffering & acknowledged he could have called me a 2nd time to let me know what was happening but he didn’t & when his shift ended he just went home! Nurse tried to smooth things over by saying Bob had fresh clean sheets and a fluffy pillow when he passed (like that would console me)! I am now strong enough to express complaints to hospital. I realize this might be outside of what comments you wanted but this horrible experience certainly misled me & Bob! And as I said, I’m still trying to recover. In this age of COVID, how does one criticize medical staff? Thank you.
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BK Books replied:
Oh Bonnie, I’m so sorry. So many things could have been done differently. Would any have changed the outcome of when your brother died, no one knows but handled differently it certainly would have affected how you are grieving. May I suggest you speak with the hospital administration, go to the top, and explain everything that occurred (not just a letter but speak directly to a person about your experience). They need to know. Do it in your brother’s name to honor his experience. When that is done write your brother a letter and tell him not just your feelings of loss and love but of your actions with the hospital. Put it all down on paper, then burn the paper and scatter the ashes to the wind, a symbol of your love and your actions. My blessings are with you. Barbara
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