Dear Barbara, should we tell someone they are dying? How do we do it correctly? I feel I need to tell mom because I need her to know for my own self.
I don’t know that there is a “correct” way to tell someone they are dying. I can offer you some things to think about.
First, we live in our bodies. We know when it is seriously not doing well. We know on some level (a level we may not want to consciously admit) that we are probably not going to get better. All these thoughts go on inside of us, we may not share them with others. Add a physician that is not open about the eventual outcome of the illness --death-- and that lends confusion to our inner thoughts. It adds hope to our inner knowledge but threatens that inner voice that so often guides us.
People say not telling a person that they can’t be fixed is taking away their hope. I say that not telling a person they can’t be fixed is taking away their opportunity to do and say that which is important to them. It is taking away their ability to make decisions based on knowledge of how their life will proceed. It also confuses them in that internally they sense they are not going to get better yet everyone is acting as if they are. This creates isolation and game playing at a time when what is really healing and helpful is openness, closeness, and honesty.
No one knows how long someone has to live. No one can put a number on how long someone’s life will be based on their disease process. We can however determine that no matter how much treatment is offered and given the disease is what a person will eventually die from. When death will actually occur is basically indeterminable. We in the medical profession cannot be so specific as to put actual numbers on how long someone has to live. The closest we can get is months, weeks, days or hours. There are just too many dynamics involved with a personality and the dying process.
I do believe a person should be told by their physician that they can’t be fixed, that their disease will progress to the point of death. If the physician has told the family and not the patient (which should not happen but does) then yes, I believe that someone should tell. This is not a time for secrets.
How do you do this? Gently and honestly. “Mom, this is hard to talk about but we need to be open with each other. The doctors are probably not going to be able to fix this. We don’t know how long but this is probably as good as your body is going to be. What can we do for you now. How can we make this time we have together the best it can be.” From this beginning conversation can come many more conversations. Conversations about fear, about family, about love, about regrets, about the infamous bucket list. Many doors can be opened when honesty is offered. The game playing often stops and a real closeness can be built (the best relationship I had with my mother was built during the last 5 months of her life).
We are often afraid of the truth. Everyone dies yet it seems so unnatural when it is our turn or someone close to us’ turn. So unnatural that we want to close our eyes and avoid its uncomfortableness. If we can push through that barrier we will find a gift, a gift of time. The opportunity to do and say that which we may have never said or done because we thought we had tomorrow.
Something More about Telling Someone They're Dying...
I would offer your mother my book, A TIME TO LIVE, Living with a Life-Threatening Illness. It will help her decide how she wants to live the fullest during this gift of time. It offers guidance for living and explains comfort control, nutrition, sleep, pain medications, overdosing and addiction possibilities as they relate to a serious illnesses as well as the fear of death that we all bring to this final experience.
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When my mother was nearing the end of her life, she told me “I am tired.”
I knew what this meant. She was ready to die.
So then I asked her, if you get pneumonia again would you want to go to the hospital, or stay home.
She said she would want to stay home, so that is what we did.
She did not develop pneumonia again, but we knew what she wanted and did that for her.
She also told me I don’t think your sister is ready for me to go yet, and I believe she was right,
but in a few weeks things changes as my sister saw our mother get weaker.
Then it was a peaceful death, we all were prepared and accepted it with peace.
As others have already stated, I too valued reading your insights on whether to tell someone they are dying.
My mother is late stage dementia, but has good health, so she could be around for (many?) more years. No one has discussed her situation with her up until I did the other day. The reason I did was because she seemed more aware and in the moment than she had been in 18 months. While I was GENTLY updating her on what I had been taking care of for her, she asked me relevant questions! It was a relief to be frank with her. I do not expect her to retain this information and I may tell her again, and again. It’s just that she seems lost here and I thought my discussion could help her realize she has had a full life, family that loves her, and that it’s okay if she leaves us and joins other family members that have passed away.
My choice may not be right for others but I wanted to share what happened.
Hi Nancy, in response to your question of how should you handle talking with your mom about end of life issues: because she has late stage dementia I wouldn’t talk with her about hospice or end of life. I see no need to put her through the trauma. The reason I suggest talking about end of life is to give everyone the opportunity to do and say what they need to do and say. With dementia that possibility isn’t there. If she can even register the effects of your words she would soon forget and you are not accomplishing anything. I think actually causing harm. Best to just love her. Nothing can be accomplished in telling her. My blessings to you both. Barbara
my wife of 60 yrs was dying and at first she said she was going to lick this, but as time went on she and I both knew it wasn’t to be. as she got weaker and tended to sleep more, we both knew time was running out. but we included her in everything we did. although she would not eat toward the end, we had her at the table and we all talked to her and she would smile once in awhile so we knew she knew what was going on. she was a close part of our lives right to the very end. although when the nurse said she had passed, I swear I could make out a faint smile on her face like she was happy to go to the lord. she had been in so much pain right to the bitter end, it must have been a relief that the pain was ending forever. god bless her soul as I know she is in good hands
Hi Barbara….once again you have responded accurately & with wisdom….what wonderful words to help families, people, spouses come to terms with reality & make amends, closure, forgiveness with love & grace, keeping the human spirit intact.
I only ask one change…..substitute the word medical for nursing. I am not a medical professional, I am a Nurse Practitioner, a profession with it’s own license, Board, CEU requirements, etc.
Until we separate ourselves (not part of room & board in hospitals) from medicine ( having our own diagnoses’ in a DCM we will never be recognized as independent practitioners. A letter to the Editor about my position was published in the September issue of the Journal for Nurse Practitioner/American Association of NPs.
Again, thank you for teaching so many of us.
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