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
I am so happy to have this opportunity to let you know how much your work and guidance has helped me and everyone that I give your booklets to. I am an Inelda trained Doula and I bless the day your work was introduced to me so I could use it to help others. Instead of Sympathy cards I send My Friend, I Care. There aren’t enough words for The Eleventh Hour and this goes on and on. Thank you. Thank you. Thank you.
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BK Books replied:
Hi Saundra, thanks for the kind words about my booklets. You are using My Friend, I Care in the way I envisioned, as a sympathy card. Blessings! Barbara
Hello Barbara, and all, thank you for your work. I was happy you addressed this issue, and I related to Bonnie’s story above. I was faced with having to tell my 93 year old mother she was dying just a few days before she passed. My sister, who is an MD, and was caring for my mother, couldn’t tell her!? Neityer could the doctor on staffing! In fact, mother was severely neglected, forced to live alone with no support, and despite my pleading, my sister, the doctor, assumed Power of Attorney, and blocked me from helping, thinking she knew best! Mother had specific wishes- I was supposed to carry them out. I was prevented from access and the truth of mom’s prognosis- and my mother ended up dying in a rehab facility after three bone-breaking falls in 6 months. I spent a beautiful 11 hours with her helping her process the new information before my sister came barreling back in to “direct.” Many doctors are either stuck in their ego, are burnt out, or are just too internally weak themselves to be effective communicators with the dying. I have not spoken to my sister since and have no plans to reconcile. By all means, tell the person immediately of their prognosis, but base it in reality, not always what doctors guess. I still deeply grieve my mother’s forced death circumstances and regret not trying harder to give her her final wishes. Thank you for bringing this issue to light here.
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BK Books replied:
Hi Kim, I am so sorry for the conflict that occurred between you and your doctor sister. So many of our medical professionals see dying and death as a failure to their work and therefore are blind to the naturalness of the dying process. Our medical model tends to treat diseases that people have verses people that have disease. Their lense is to fix, not necessarily comfort. So sad. Blessings! Barbara
I have been using your books for years as a caregiver. I first saw the blue book doing in home care for someone at the end of their life. The hospice company had one in the folder they gave the family. I have since bought several to give when needed. I took some for my nieces when my sister was at the end. It helped them understand what was going on with their mother and it helped my siblings also.
Thank you for writing the books.
Linda
This may not be exactly on point, but is similar.
When it was time for my husband to go on hospice, the first group I called said that it was their policy that they had to inform the patient that they were on hospice. Communication with my husband was difficult by this time, but eventually I was able to ask him if he wanted to know when it was time for hospice. He began to cry. That’s all I needed to know. I chose another hospice organization, who agreed to never even mention the word “hospice” to him. He got to know and like the nurses who cared for him, and I don’t think he ever realized why they were visiting him. (There was a period of time before services began.) I told him that they were there because it was so hard for us both to get to the doctor, which he knew was true. For the rest of his life, he thought the nurses were checking on me, too, after they saw him. For as long as he was able, he would always ask them how I was doing.
Long before this time we had said everything that needed to be said to each other and taken care of legal and financial matters. My husband had known for years that he would not survive his illness. But telling him that he had reached the point of being on hospice would have only burdened him and broken his heart. Every case is different, but this is what worked for him.
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BK Books replied:
Hi Jan, thank you for sharing. You make some interesting points. You really described to your husband what hospice does (takes care of you as well as him), you didn’t lie to him you just didn’t use the word hospice. WIth families that didn’t want to use the word hospice I would tell them, I won’t mention the word and I won’t bring up the subject of a life threatening illness BUT if they, the patient, asks me about anything I won’t lie and I will answer them or talk with them about whatever it is they are interested in and I will tell you, the family if that happens. Also you mentioned that your husband had already addressed legal and financial issues. What I see is you both used your gift of time very well. You looked out for each other, loved and supported each other. Isn’t that what we all want to do? Good job. Blessings! Barbara
Insightful as always! Thank you Barbara for sharing your knowledge and compassion with us. Your resources are invaluable for all of us.
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