I got a letter telling me that we, healthcare professionals and doctors, should not tell people they are going to die. The letter got me thinking about why I believe a person should be told, and also wondering if there are indeed people that don’t want to know.
Let’s start with people that don’t want to be told they can’t be fixed, that death is in their near future. If you don’t want to be told that kind of information then you definitely need to have an Advanced Directive stating your wishes. You need to have “the talk” with your general physician and with your family. If you don’t want to know the seriousness of a medical condition you need to have plans in place BEFORE you need them. Most physicians will at least indirectly tell their patients when treatment is not working.
Now, why do I believe a person should be told they can’t be fixed, that they have a medical condition or situation that will lead to death?
Number one, we are all going to die at some point. Of course the operative words here are “at some point.” If we are told death will be the outcome of a particular situation or condition, we are given the opportunity to do and say that which needs to be done and said.
As healthcare workers dealing with approaching death, our job is to provide honest, appropriate information to patients and their significant others. We need to give them the opportunity to address the final part of their lives, to give them an opportunity to put their "house in order.” We are doing our patients a disservice by not telling them medicine has given them all it has to offer.
I included significant others in the above paragraph; however the Health Insurance & Accountability Act (HIPAA) requires doctors and their staff to keep patients' medical records confidential unless the patient allows them to disclose. This can be a hurdle for families.
Most of us either live in the past or the future, few of us live in the present. The past is a memory and the future is an idea —— only the present is real. To be told “we can’t fix you. Death will be here sooner rather than later” gives the opportunity, the gift, to recognize our present, to live in our present and to make our moment to moment living meaningful.
You’ve heard the term “Bucket List.” We can fulfill our Bucket List. We can amend relationships, watch the sunrise and sunset, and appreciate what being alive is about. I have so many stories of wishes being fulfilled—-the last trip to Las Vegas, the “camper trip” to the Lake of the Ozarks, a shipment of crawdads from New Orleans, a family reunion… These are stories of opportunities that would have been missed if they thought they had tomorrow, or next week or even next year. Not sharing our final moments can be considered, literally, a waste of time.
You’ve heard me use Doctor Bob’s term Precious Time. By not telling someone their life will come to an end sooner rather than later we have robbed them and their special people of their precious time.
Something More... about Why I Believe a Person Should Be Told They Can't Be Fixed
When a person receives the diagnosis of a life-threatening illness, life as they know it ceases. They find themselves in uncharted territory with no script to follow. Too often they withdraw from the world, as if they have already died. All activity becomes centered on their living with disease and its treatment. Fear and uncertainty replaces confidence and self identity. The joys of living are more or less put on hold while living as long as possible is pursued.
My booklet, A Time to Live: Living with A Life-Threatening Illness honors whatever life prolonging choices are being made while at the same time suggesting we look at the gifts life offers each day. It is part of the 5 book bundle, End of Life Guideline Series: A Compilation of Barbara Karnes Booklets
7 comments
Vanessa Weis
My mother is in the dying experience as I type this. I have your booklet “Gone From My Sight”. She is 98 and in a nursing home.and under hospice care. She has some of the symptoms listed in “weeks” and some in “days”. I cannot be with her 24/7, but I try to spend as much as possible.
She has stopped eating and drinking. I don’t know if I should tell her it’s OK to go to heaven or just talk about cheerful things. Tell her stories, hold her hand, pray the Divine Mercy Chaplet. She is and always has been a beautiful soul. It’s so sad to see her this way.
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BK Books replied:
Hi Vanessa, I would do all the things you mentioned. It is okay to tell her she can go to heaven. She may just be needing your permission. You can also say all the things in your heart that you have wanted to say to her. Now is the time. Whether she is responsive or not, talk to her. She can hear you. My blessings to you and your mom. Barbara
My mother is in the dying experience as I type this. I have your booklet “Gone From My Sight”. She is 98 and in a nursing home.and under hospice care. She has some of the symptoms listed in “weeks” and some in “days”. I cannot be with her 24/7, but I try to spend as much as possible.
She has stopped eating and drinking. I don’t know if I should tell her it’s OK to go to heaven or just talk about cheerful things. Tell her stories, hold her hand, pray the Divine Mercy Chaplet. She is and always has been a beautiful soul. It’s so sad to see her this way.
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BK Books replied:
Hi Vanessa, I would do all the things you mentioned. It is okay to tell her she can go to heaven. She may just be needing your permission. You can also say all the things in your heart that you have wanted to say to her. Now is the time. Whether she is responsive or not, talk to her. She can hear you. My blessings to you and your mom. Barbara
Debra
We, as healthcare professionals, are responsible to be honest and open with patients regarding their condition. Since when has that been an issue? REMEMBER the course in Ethics!!! We are not God. We are not psychic. We are not ALL KNOWING! Choose compassionate gentle and honest words. Be there for them in a way that they need us to be. They will need us!!!!!!!
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BK Books replied:
Debra, I so agree. Well said. Blessings! Barbara
We, as healthcare professionals, are responsible to be honest and open with patients regarding their condition. Since when has that been an issue? REMEMBER the course in Ethics!!! We are not God. We are not psychic. We are not ALL KNOWING! Choose compassionate gentle and honest words. Be there for them in a way that they need us to be. They will need us!!!!!!!
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BK Books replied:
Debra, I so agree. Well said. Blessings! Barbara
Robyn
Thank you for your very important article. My brother was a drug addict for decades and all of us knew he wasn’t going to have a good, long life. He passed away at 53. I was with him at the VA Hospital when the nurse took me aside and said she had to inform my brother that there was nothing else they could do for him and he was going to die soon. I begged her not to tell him that because he had already began to isolate at home (meaning beginning the death journey). She said she had to by law. I had to be with him when she informed him and he looked at me as if he was in disbelief and looked right through me with an intense stare that lasted awhile. It was heartbreaking for me and him. He ended up in a wonderful Hospice facility that night. I stayed in his room with him 24/7 until he died 7 days later. I told him we were going on a trip, same train, different destinations. We had a few words, but he slipped into the coma like state after that until he died. I thought I handled it appropriately with him; many disagreed. But it went fine, I was right by his side, and he passed peacefully and comfortably.
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BK Books replied:
Hi Robyn, your brother being told he was dying did not hasten his death but it did give you and your family precious time to be with him. From what you have written you did an excellent job of being there for your brother. Blessings to you and your family. Barbara
Thank you for your very important article. My brother was a drug addict for decades and all of us knew he wasn’t going to have a good, long life. He passed away at 53. I was with him at the VA Hospital when the nurse took me aside and said she had to inform my brother that there was nothing else they could do for him and he was going to die soon. I begged her not to tell him that because he had already began to isolate at home (meaning beginning the death journey). She said she had to by law. I had to be with him when she informed him and he looked at me as if he was in disbelief and looked right through me with an intense stare that lasted awhile. It was heartbreaking for me and him. He ended up in a wonderful Hospice facility that night. I stayed in his room with him 24/7 until he died 7 days later. I told him we were going on a trip, same train, different destinations. We had a few words, but he slipped into the coma like state after that until he died. I thought I handled it appropriately with him; many disagreed. But it went fine, I was right by his side, and he passed peacefully and comfortably.
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BK Books replied:
Hi Robyn, your brother being told he was dying did not hasten his death but it did give you and your family precious time to be with him. From what you have written you did an excellent job of being there for your brother. Blessings to you and your family. Barbara
Mary Quinn
The first Oncologist I worked with once told me that he wasn’t going to “take away hope” from the patients. He would offer treatment up until the moment the patient died.
The first time I met the next Oncologist I worked with, he said that “if we aren’t honest with the patients we are stealing from them.” It was such a relief to hear those words.
The time they have is precious. They should be able to make informed decisions on how they want to spend that time.
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BK Books replied:
Hi Mary, unfortunately way too many oncologists believe and act like your first oncologist. I like what your second oncologist said they were “stealing time”. So true! Blessings to you in the work you are doing. Barbara
The first Oncologist I worked with once told me that he wasn’t going to “take away hope” from the patients. He would offer treatment up until the moment the patient died.
The first time I met the next Oncologist I worked with, he said that “if we aren’t honest with the patients we are stealing from them.” It was such a relief to hear those words.
The time they have is precious. They should be able to make informed decisions on how they want to spend that time.
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BK Books replied:
Hi Mary, unfortunately way too many oncologists believe and act like your first oncologist. I like what your second oncologist said they were “stealing time”. So true! Blessings to you in the work you are doing. Barbara
Susan
I hear what you are saying. As in all things there is a time to say, “It’s okay to go”. I do think though that mind over matter is a real thing and I know so many patients that have way out kicked their coverage as it were because they were told they could extend their lives. Most especially heart patients and cancer patients. There are many anecdotal but still true stories of patients experiencing radical remission when told the doctor got all the cancer even though they did not. The mind is a funny thing. I thing this advice must be applied wisely by a trained end of life professional who can read the patient.
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BK Books replied:
Susan, thank you for your comment. I’m not sure we as professionals should make the “call” whether our patient should be told or not. Everyone has the right to be advised of the seriousness of their physical health. We professionals just have a piece of a person’s puzzle of life. That piece is too small for us to be deciding what is best for our patients to know. Blessings to you. Barbara
I hear what you are saying. As in all things there is a time to say, “It’s okay to go”. I do think though that mind over matter is a real thing and I know so many patients that have way out kicked their coverage as it were because they were told they could extend their lives. Most especially heart patients and cancer patients. There are many anecdotal but still true stories of patients experiencing radical remission when told the doctor got all the cancer even though they did not. The mind is a funny thing. I thing this advice must be applied wisely by a trained end of life professional who can read the patient.
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BK Books replied:
Susan, thank you for your comment. I’m not sure we as professionals should make the “call” whether our patient should be told or not. Everyone has the right to be advised of the seriousness of their physical health. We professionals just have a piece of a person’s puzzle of life. That piece is too small for us to be deciding what is best for our patients to know. Blessings to you. Barbara
Marcia
I there a way to share a “miracle” with you personally? Marcia Dudley
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BK Books replied:
Marcia, I don’t do the phone but we can communicate by email if you would like. Barbara@bkbooks.com. Blessings! Barbara
I there a way to share a “miracle” with you personally? Marcia Dudley
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BK Books replied:
Marcia, I don’t do the phone but we can communicate by email if you would like. Barbara@bkbooks.com. Blessings! Barbara
John
Just to weigh in, I have 2 terminal blood cancers, 2 non terminal brain cancers, stroke, heart disease, etc…. I want to know prognosis, status and any pertinent details. My biggest concern is for the family left behind and IMHO, one of the best ways to help them is to help them prepare and for the end, it would help to have an idea of what is pending and when… I was given 5 years, I’m now thru 7, no negatives from being told a time frame, living past and the effect of moving forward. Just my 2 cents from the firing line…..
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BK Books replied:
Hi John, thank you so much for your comments. Hopefully people will read them and learn from hearing someone who is walking in the very “shoes” we are talking about. Blessings to you on your journey. Barbara
Just to weigh in, I have 2 terminal blood cancers, 2 non terminal brain cancers, stroke, heart disease, etc…. I want to know prognosis, status and any pertinent details. My biggest concern is for the family left behind and IMHO, one of the best ways to help them is to help them prepare and for the end, it would help to have an idea of what is pending and when… I was given 5 years, I’m now thru 7, no negatives from being told a time frame, living past and the effect of moving forward. Just my 2 cents from the firing line…..
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BK Books replied:
Hi John, thank you so much for your comments. Hopefully people will read them and learn from hearing someone who is walking in the very “shoes” we are talking about. Blessings to you on your journey. Barbara