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.
15 comments
Gail
Our mother is dying, and she has steep denial. She tells everyone, she is going to walk again, go shopping, and never mentions her incurable advanced cancer diagnosis, just her healing bedsore issue.
The Hospice Medical Social Worker even told us not to tell her, as she isn’t emotionally mature, and is a narcissist. She has the nerve to complain about her primary caregiver, a family member, who has been selfless.
Interesting, that you write people intuitively know most times, but internalize their fears. Our mother is weak, has been bedridden for months, yet she is going back to her old normal. Her new normal is progressing to her mortality.
Our mother is dying, and she has steep denial. She tells everyone, she is going to walk again, go shopping, and never mentions her incurable advanced cancer diagnosis, just her healing bedsore issue.
The Hospice Medical Social Worker even told us not to tell her, as she isn’t emotionally mature, and is a narcissist. She has the nerve to complain about her primary caregiver, a family member, who has been selfless.
Interesting, that you write people intuitively know most times, but internalize their fears. Our mother is weak, has been bedridden for months, yet she is going back to her old normal. Her new normal is progressing to her mortality.
Barbara Karnes
Hi Traci, the will to live is a powerful force. Having a purpose, a reason to get up in the morning is also vital. As we age we often lose our purpose. Either affects our quality of life as well as our quantity. Your mother has purpose even though it is tiring. I don’t have enough information on your dad to know about purpose although it sounds like he is done and ready to leave this earth.
What can you do to help? Ask. “Mom you have a huge job. How can I help? What can I do for the two of you?”
As you look around and assess their living conditions see if it is time to get additional help in the home. Contact Social Services or a case manager from the hospital. Inquire about Palliative care for your dad which would be able to plug them into some help in the home. While you are there ask about their Advanced Directives. How do they want to spend their last days?
Since you cannot be a constant presence make phone calls your connecting link. Establish regular, frequent telephone calls, at least weekly, if not more. The calls become your touch stone. They let them know they are not alone, that you are thinking of them even though you can’t physically be there and the calls are your source of information. Blessings to you and your family. Barbara
Hi Traci, the will to live is a powerful force. Having a purpose, a reason to get up in the morning is also vital. As we age we often lose our purpose. Either affects our quality of life as well as our quantity. Your mother has purpose even though it is tiring. I don’t have enough information on your dad to know about purpose although it sounds like he is done and ready to leave this earth.
What can you do to help? Ask. “Mom you have a huge job. How can I help? What can I do for the two of you?”
As you look around and assess their living conditions see if it is time to get additional help in the home. Contact Social Services or a case manager from the hospital. Inquire about Palliative care for your dad which would be able to plug them into some help in the home. While you are there ask about their Advanced Directives. How do they want to spend their last days?
Since you cannot be a constant presence make phone calls your connecting link. Establish regular, frequent telephone calls, at least weekly, if not more. The calls become your touch stone. They let them know they are not alone, that you are thinking of them even though you can’t physically be there and the calls are your source of information. Blessings to you and your family. Barbara
Barbara Karnes
Hi Karen, You reminded me that each situation is different. What is right for one person may not be right for another. This is where listening to our heart, our gut instincts, come into play. We need to gather as much information as we can about a subject, take that knowledge inside, think about how it pertains to us and then make our decision. More than likely that will be the right decision. If it turns out to have not so good results take it as a learning experience for next time and move on. Thank you for sharing. My blessings to you and your mom. Barbara
Hi Karen, You reminded me that each situation is different. What is right for one person may not be right for another. This is where listening to our heart, our gut instincts, come into play. We need to gather as much information as we can about a subject, take that knowledge inside, think about how it pertains to us and then make our decision. More than likely that will be the right decision. If it turns out to have not so good results take it as a learning experience for next time and move on. Thank you for sharing. My blessings to you and your mom. Barbara
Traci Eaton
Thank you for your insightful and beautiful books. We will be eternally grateful to our hospital hospice unit for the gift of the little blue book when my mother-in-law was in their care, I have since bought the whole set for myself and my mother and sister. At present my father, who is 96, has been diagnosed with Atrial fibrillation so does not qualify for Hospice. He is clearly failing and has had chronic depression since his 30s so his interest in both living and the dying process is nil. He just wants to go and not have anyone bother him about it. My problem is that I live over a thousand miles away in the midwest, they live near Denver. I will be with them for about a week in late January on my way to my mental health and wellness respite in Arizona and then will stay with them again in late March, all else being equal, on my return trip home. How can I be the most help to my 92 year old mother, who is sole caregiver at present? I think she feels she has lost the death race with him and is once again shouldering all the burdens?
Thank you for your insightful and beautiful books. We will be eternally grateful to our hospital hospice unit for the gift of the little blue book when my mother-in-law was in their care, I have since bought the whole set for myself and my mother and sister. At present my father, who is 96, has been diagnosed with Atrial fibrillation so does not qualify for Hospice. He is clearly failing and has had chronic depression since his 30s so his interest in both living and the dying process is nil. He just wants to go and not have anyone bother him about it. My problem is that I live over a thousand miles away in the midwest, they live near Denver. I will be with them for about a week in late January on my way to my mental health and wellness respite in Arizona and then will stay with them again in late March, all else being equal, on my return trip home. How can I be the most help to my 92 year old mother, who is sole caregiver at present? I think she feels she has lost the death race with him and is once again shouldering all the burdens?
Anne Daigle,RN
Good questions good answers.
Good questions good answers.
Martha
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.
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.
Karen
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.
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.
Barbara Karnes
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
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
kenneth d marlatt
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
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
Claudia Hauri
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.
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.
Nancy Patrick
My Mom has been placed on Hospice at her Memory Care facility. She is 88 and diagnosed with Congestive Heart Failure. She has late stage dementia and doesn’t understand that she is on Hospice. So far, she is doing pretty well but will not get better. Can you speak to how we should approach death issues with her in this situation or if we shouldn’t? Thanks.
My Mom has been placed on Hospice at her Memory Care facility. She is 88 and diagnosed with Congestive Heart Failure. She has late stage dementia and doesn’t understand that she is on Hospice. So far, she is doing pretty well but will not get better. Can you speak to how we should approach death issues with her in this situation or if we shouldn’t? Thanks.
Barbara Karnes
Hi Frank, When a significant other is in denial you gently remind them, when the issue comes up, that the physician has said Dad can’t be fixed. No one knows how long someone has to live but they can know when a person will die from their disease. Often the “there will be a miracle” card is played and yes there could be a miracle but miracles are hard to come by. Try to concentrate on living in the present. Concentrate on making the best of each day, of living the gift of time that has been given. Gently guide the person in denial to see that it isn’t about saying or believing a person will get better or that a person can’t be fixed. It is about living life each day to the best you can.. Blessings! Barbara
Hi Frank, When a significant other is in denial you gently remind them, when the issue comes up, that the physician has said Dad can’t be fixed. No one knows how long someone has to live but they can know when a person will die from their disease. Often the “there will be a miracle” card is played and yes there could be a miracle but miracles are hard to come by. Try to concentrate on living in the present. Concentrate on making the best of each day, of living the gift of time that has been given. Gently guide the person in denial to see that it isn’t about saying or believing a person will get better or that a person can’t be fixed. It is about living life each day to the best you can.. Blessings! Barbara
Frank Seidel
I so agree with you on this subject. I remember how relieved I felt when a minister said to my father, “you know you are dying” and my father answered “yes”. From that point approximately a few hours we became comfortable with each other. Unfortunately my mother couldn’t grasp the situation and kept talking about his getting better. This promotes the question, how do you cope with one that stays in denial?
I so agree with you on this subject. I remember how relieved I felt when a minister said to my father, “you know you are dying” and my father answered “yes”. From that point approximately a few hours we became comfortable with each other. Unfortunately my mother couldn’t grasp the situation and kept talking about his getting better. This promotes the question, how do you cope with one that stays in denial?
Linda McGlynn
This is very good advice. No one escapes death, but sometimes family & docs tend to give false hope. It was hard to tell my dad he was dying, but I did. I’m pretty sure he knew anyway, but I confirmed what he suspected. It gave us ALL the opportunity to say goodbye the way each one of us, including dad, wanted to.
This is very good advice. No one escapes death, but sometimes family & docs tend to give false hope. It was hard to tell my dad he was dying, but I did. I’m pretty sure he knew anyway, but I confirmed what he suspected. It gave us ALL the opportunity to say goodbye the way each one of us, including dad, wanted to.
Ginger
Sometimes the patient knows before the caregiver. I think my mother knew she wasn’t going to get better before I realized it.
Sometimes the patient knows before the caregiver. I think my mother knew she wasn’t going to get better before I realized it.