Sometimes our patients and families don't want to hear the words "hospice" or "end of life care." I have been asked, “should we use words that are more sensitive?”
I don’t think so; I don’t think we need to use other words to be more sensitive to end of life issues. This seems to be a problem today with physicians and healthcare workers. Don’t use the "d word." Address treatments but don't say "There is nothing more we can do."
Everybody dies. Our bodies are programmed to die. From the moment we are born we begin to die, yet no one wants to acknowledge it. Studies show that Americans spend hundreds of thousands of dollars on medical treatment in the last year of their lives. For many this results in bankruptcy. Yet in the majority of those cases the result of the medical intervention ended in death-----because disease is one of the ways people die.
SO---I think we need to be honest with our patients and families. When I say “we“ I mean all healthcare professionals, from physicians to everyone else. Not being insensitive but honest. When a person sits across the desk and we are talking about treatment for a life threatening illness too often the physician thinks they are saying one thing but the patient/family is hearing something else. For the patient/family they generally equate treatment with cure. Cure means returning to a healthy life. When the physician is speaking about treatment they are probably talking tumor reduction, or remission at best. Who said “What we have here is a failure to communicate?”
Someone has to have the courage to say “We’ve done the best we can. We can’t fix you. Let us help you have some quality time”.
We really aren’t doing people any favors by not being honest with them. We aren't giving their families the opportunity to do and say what needs to be said and done. We are depriving people the opportunity to put their life in order, to say “goodbye and I love you”. We are not only taking their money but their time. So often the last year of a person’s life is spent in hospitals, at doctor’s appointments, in labs getting blood work, in radiology getting treatments, and at home in bed too sick to enjoy the time they have.
I know, I work on the down side of the medical establishment. You say I only see the situations where medicine doesn’t work but I say I see the real side of living. We are born, we experience and we die. That is what life is all about. I don’t have the illusion that the body lives forever and I do have the desire for us to experience the positive side of living until we are dead.
Something more about... “We’ve done the best we can and we can’t fix you...”
Many nursing schools, end of life training programs and hospice volunteer training use my book, The Final Act of Living as a resource to educate on care for the dying. In the book I share insights and experiences gathered over decades of working with people during their final act of living. It is intended for both professionals and laypeople, this book weaves personal stories with practical care guidelines, including: living with a life-threatening illness, signs of the dying process, of grief, living wills, and other end of life issues.
11 comments
Ilyssa Silfen
Barbara, you hit the nail on the head when you said that we don’t do dying people or their families any favors by lying to them about what is happening to them. All it does is rob them of the time they could have spent together making meaning of the life that was lived (and is still being lived even in the face of dying!). Many people believe that as long as they (or their loved one) are being treated, there’s still a chance that maybe they can beat the disease, even if they are suffering. Honest conversations about how no amount of suffering will prevent death may help people make decisions geared more towards comfort than extending their lives, no matter the quality. Thank you for advocating for honesty in end-of-life care – it is sorely needed!!
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BK Books replied:
Alyssa, Beautifully said. Thank you. Blessings! Barbara
Barbara, you hit the nail on the head when you said that we don’t do dying people or their families any favors by lying to them about what is happening to them. All it does is rob them of the time they could have spent together making meaning of the life that was lived (and is still being lived even in the face of dying!). Many people believe that as long as they (or their loved one) are being treated, there’s still a chance that maybe they can beat the disease, even if they are suffering. Honest conversations about how no amount of suffering will prevent death may help people make decisions geared more towards comfort than extending their lives, no matter the quality. Thank you for advocating for honesty in end-of-life care – it is sorely needed!!
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BK Books replied:
Alyssa, Beautifully said. Thank you. Blessings! Barbara
Marilyn VanTilburg
Barbara, I really appreciate your wisdom and the sharing that others are open to do on your website. I am blessed to sit with patients who have a short span of time to live on this earth. I am amazed what they want to talk about when I spend some time with them. Just talking about life, family, nature and then their life comes to a close. We cannot always be with them at the end but the golden moments are when we are with our person and able to communicate the good things of this life that we have been blessed to live.
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BK Books replied:
Hi Marilyn, thank you for sharing your beautiful thoughts with us. Blessings! Barbara
Barbara, I really appreciate your wisdom and the sharing that others are open to do on your website. I am blessed to sit with patients who have a short span of time to live on this earth. I am amazed what they want to talk about when I spend some time with them. Just talking about life, family, nature and then their life comes to a close. We cannot always be with them at the end but the golden moments are when we are with our person and able to communicate the good things of this life that we have been blessed to live.
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BK Books replied:
Hi Marilyn, thank you for sharing your beautiful thoughts with us. Blessings! Barbara
Novelette
I agree, 100%. It’s such a pet peeve of mine. I live with a life limiting illness and I asked a doctor who was doing a particular treatment on me once what goal was? Where she saw this going. And she basically said oh let me find someone to talk to you about that. Then at my next visit brought in a hospice doctor. That’s how i found out that she wasn’t treating for cure. haha Not that there is one for my condition but at least to get better. That particular issue hasn’t taken my life yet, It has since improved in that particular way she said wasn’t possible. But since then I’ve been diagnosis with cancer and it had spread to my lymph node by the time I saw my oncologist for the first time. Because of my experience volunteering in this arena on that first visit I told him I need for you to be straight up honest with me on where we are at. I told him I’m not the kind of person that cares to do treatments just to do treatment when there is no benefits. Thankfully there has been benefits and I have gotten a year I didn’t know that I would have. He told me recently that he thinks things are stable and in oncology that’s sometimes best they can do, that’s the goal. So I was like, okay cool. So for now. the treatment is helping but it’s taking a toll of me. My body is battling over resources. The immunotherapy wants it for my body to fight the cancer and my body wants it for the other issues I have. So my iron and hemoglobin are low. I already had issues with anemia. But now my heart rate is elevated and my blood pressure is starting go up now. So I feel like who knows how long I can withstand it all. I’m all for going home. I miss my friends and family on the other side. But my kitty and the human kids in my life. I don’t want them to have to learn that lesson. I love the kids like they were my own. But yeah one day at time. I’ve gotten a whole year I wasn’t sure I would have had…. I think it’s vital that you get all the information though so you can make adequate decisions that allows you to live the life you want to live.
Thanks for saying what needs to be said. We all live to die. We get live until.
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BK Books replied:
Hi Novelette, thank you for sharing your health journey with me. You’ve had quite a time and yet kept a positive outlook. Good for you. Blessings! Barbara
I agree, 100%. It’s such a pet peeve of mine. I live with a life limiting illness and I asked a doctor who was doing a particular treatment on me once what goal was? Where she saw this going. And she basically said oh let me find someone to talk to you about that. Then at my next visit brought in a hospice doctor. That’s how i found out that she wasn’t treating for cure. haha Not that there is one for my condition but at least to get better. That particular issue hasn’t taken my life yet, It has since improved in that particular way she said wasn’t possible. But since then I’ve been diagnosis with cancer and it had spread to my lymph node by the time I saw my oncologist for the first time. Because of my experience volunteering in this arena on that first visit I told him I need for you to be straight up honest with me on where we are at. I told him I’m not the kind of person that cares to do treatments just to do treatment when there is no benefits. Thankfully there has been benefits and I have gotten a year I didn’t know that I would have. He told me recently that he thinks things are stable and in oncology that’s sometimes best they can do, that’s the goal. So I was like, okay cool. So for now. the treatment is helping but it’s taking a toll of me. My body is battling over resources. The immunotherapy wants it for my body to fight the cancer and my body wants it for the other issues I have. So my iron and hemoglobin are low. I already had issues with anemia. But now my heart rate is elevated and my blood pressure is starting go up now. So I feel like who knows how long I can withstand it all. I’m all for going home. I miss my friends and family on the other side. But my kitty and the human kids in my life. I don’t want them to have to learn that lesson. I love the kids like they were my own. But yeah one day at time. I’ve gotten a whole year I wasn’t sure I would have had…. I think it’s vital that you get all the information though so you can make adequate decisions that allows you to live the life you want to live.
Thanks for saying what needs to be said. We all live to die. We get live until.
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BK Books replied:
Hi Novelette, thank you for sharing your health journey with me. You’ve had quite a time and yet kept a positive outlook. Good for you. Blessings! Barbara
Cathy
Very well said, Barbara. What do you do in the case of a family member who states they don’t want the word “hospice” used in front of the patient? I respect their wishes, but it isn’t easy for me to do. I prefer open and honest communication. Besides, people know when they’re not going to get well. Sometimes they aren’t given enough credit for knowing their own bodies.
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BK Books replied:
Hi Cathy, great question. Happens a lot. I say “I will not bring the subject up but if the person asks me I will talk about whatever they want to know.” I will also say to the family that their special person knows and by not talking about it they are being isolated and left alone with their thoughts and fears. Blessings! Barbara
Very well said, Barbara. What do you do in the case of a family member who states they don’t want the word “hospice” used in front of the patient? I respect their wishes, but it isn’t easy for me to do. I prefer open and honest communication. Besides, people know when they’re not going to get well. Sometimes they aren’t given enough credit for knowing their own bodies.
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BK Books replied:
Hi Cathy, great question. Happens a lot. I say “I will not bring the subject up but if the person asks me I will talk about whatever they want to know.” I will also say to the family that their special person knows and by not talking about it they are being isolated and left alone with their thoughts and fears. Blessings! Barbara
Vivian Maddox Smith
My 59 year old nephew has end stage liver disease. He has a 16 year old daughter, a 17 year old son, and a 38 year old daughter with her two sons. He wants the teens to have a normal end to the school year. He has not shared much with them about his condition, because frankly he and I (his 73 year old aunt /caregiver ) are shocked at what we have heard this month and don’t know what to think ourselves. He suddenly had a swollen belly and was told he has 80% of his liver “gone” scarred by cirrhosis. The CT scan showed MORE than 80% damage to his liver.
He was sick last year and applied for disability. The doctor dismissed his claim of being disabled. He has not been able to work.
We did not know his liver was a problem until too late. He is diabetic. His doctor died 5 years ago. He did not immediately replace his doctor. He had foot surgery and he had Covid twice. He just has found a Nurse Practitioner in January.
We are shocked that there is no cure at this stage and his only hope is to perhaps live long enough to get a liver transplant. Because his blood type is rare, he has given up on the hope of a transplant. He has written a will and signed power of attorney to me. My doctor said I may drop dead before my nephew does. I don’t know who the person is he has selected if I am not able to serve.
All I know to do is put clean, fresh food in a slow cooker with no salt and no sugar to leave for him to eat when I am not with him. He has fresh fruits like watermelon and grapes that may reduce his swelling.
I hope the gastroenterologist will recommend hospice or palliative care if my nephew can’t get a transplant. Right now he can’t take any pain medicine because it may destroy what is left of his liver. He is suffering.
I don’t know if insurance will pay for hospice or palliative care. I don’t know what the deductible is for his insurance.
I still do not have a copy of the power of attorney. I am just glad that I managed to get his tax information to the accountant to file his taxes.
All I know is what I read on the papers from the hospital, what the doctor said, and what I have read from medical sites on the Internet.
The thing that scares me is the possibility of ammonia build up and the need for a nurse or doctor to administer lactulose. What will I do? What about that confusion and if it happens when one of his teens is home and they don’t realize what is happening. Call 911?
If my nephew lives until October 9 to get to a hospital where he will be evaluated for transplant, should we take the teens with us to hear everything from the mouth of the doctor?
His teens must be part of the support team. His 38 year old daughter has a 5 and 7 year old so we don’t expect her to help much. Her hands are full. I worry that teens are not mature enough for the responsibility, but they must still be present to enjoy the remaining time with their dad. My nephew is divorced. His ex-wife has been kind during this time, but she is remarried.
I understand that he must have a support team of friends and relatives in place before he will be considered for transplant.
My brother had 6 cancer surgeries in one year. I had his daughter, my sister and two brothers to help me.
My husband pointed out that I can’t care for my nephew alone. My brothers are dead. My nephew’s best friend has cancer. I think God may supply the support team if they are needed.
I think my nephew is eating the food I bring him. I think he is doing all anyone could do to survive, but we all know death is coming. We just don’t know when. We want to live well until then. Thank you for your articles. You have helped me a lot.
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BK Books replied:
Vivian, my goodness. Tell the teen children all that is happening. They are old enough to participate in his care. Yes, it is troubling but life has challenging times. Protecting young adults does them a disservice. For needed resources Google your state “department of social and health services”. They can connect you with resources and support. Blessings to you, your family and your nephew. Barbara
My 59 year old nephew has end stage liver disease. He has a 16 year old daughter, a 17 year old son, and a 38 year old daughter with her two sons. He wants the teens to have a normal end to the school year. He has not shared much with them about his condition, because frankly he and I (his 73 year old aunt /caregiver ) are shocked at what we have heard this month and don’t know what to think ourselves. He suddenly had a swollen belly and was told he has 80% of his liver “gone” scarred by cirrhosis. The CT scan showed MORE than 80% damage to his liver.
He was sick last year and applied for disability. The doctor dismissed his claim of being disabled. He has not been able to work.
We did not know his liver was a problem until too late. He is diabetic. His doctor died 5 years ago. He did not immediately replace his doctor. He had foot surgery and he had Covid twice. He just has found a Nurse Practitioner in January.
We are shocked that there is no cure at this stage and his only hope is to perhaps live long enough to get a liver transplant. Because his blood type is rare, he has given up on the hope of a transplant. He has written a will and signed power of attorney to me. My doctor said I may drop dead before my nephew does. I don’t know who the person is he has selected if I am not able to serve.
All I know to do is put clean, fresh food in a slow cooker with no salt and no sugar to leave for him to eat when I am not with him. He has fresh fruits like watermelon and grapes that may reduce his swelling.
I hope the gastroenterologist will recommend hospice or palliative care if my nephew can’t get a transplant. Right now he can’t take any pain medicine because it may destroy what is left of his liver. He is suffering.
I don’t know if insurance will pay for hospice or palliative care. I don’t know what the deductible is for his insurance.
I still do not have a copy of the power of attorney. I am just glad that I managed to get his tax information to the accountant to file his taxes.
All I know is what I read on the papers from the hospital, what the doctor said, and what I have read from medical sites on the Internet.
The thing that scares me is the possibility of ammonia build up and the need for a nurse or doctor to administer lactulose. What will I do? What about that confusion and if it happens when one of his teens is home and they don’t realize what is happening. Call 911?
If my nephew lives until October 9 to get to a hospital where he will be evaluated for transplant, should we take the teens with us to hear everything from the mouth of the doctor?
His teens must be part of the support team. His 38 year old daughter has a 5 and 7 year old so we don’t expect her to help much. Her hands are full. I worry that teens are not mature enough for the responsibility, but they must still be present to enjoy the remaining time with their dad. My nephew is divorced. His ex-wife has been kind during this time, but she is remarried.
I understand that he must have a support team of friends and relatives in place before he will be considered for transplant.
My brother had 6 cancer surgeries in one year. I had his daughter, my sister and two brothers to help me.
My husband pointed out that I can’t care for my nephew alone. My brothers are dead. My nephew’s best friend has cancer. I think God may supply the support team if they are needed.
I think my nephew is eating the food I bring him. I think he is doing all anyone could do to survive, but we all know death is coming. We just don’t know when. We want to live well until then. Thank you for your articles. You have helped me a lot.
——-
BK Books replied:
Vivian, my goodness. Tell the teen children all that is happening. They are old enough to participate in his care. Yes, it is troubling but life has challenging times. Protecting young adults does them a disservice. For needed resources Google your state “department of social and health services”. They can connect you with resources and support. Blessings to you, your family and your nephew. Barbara
Deanna
When it becomes apparent that medicine has done all it reasonably can, we do patients a disservice by NOT talking about their impending death. We rob them of the opportunity to prioritize what’s important to them in the time they have left. There may be things they want to do, people they want to see, and conversations they need to have. It’s simply disrespectful not to acknowledge their humanity, compromise their quality of life by continually offering treatment without hope, and rob them of their most precious commodity: TIME. We need to talk about death and dying out loud in order to normalize it. Death spends too much time behind closed doors in this country.
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BK Books replied:
Deanna, well said. Blessings! Barbara
When it becomes apparent that medicine has done all it reasonably can, we do patients a disservice by NOT talking about their impending death. We rob them of the opportunity to prioritize what’s important to them in the time they have left. There may be things they want to do, people they want to see, and conversations they need to have. It’s simply disrespectful not to acknowledge their humanity, compromise their quality of life by continually offering treatment without hope, and rob them of their most precious commodity: TIME. We need to talk about death and dying out loud in order to normalize it. Death spends too much time behind closed doors in this country.
———
BK Books replied:
Deanna, well said. Blessings! Barbara
PETER ACKERMAN, II
My wife died after 5 days in Hospice on 9/11/23 so I can relate to your journey. When we realized she had a terminal condition with an expected due date, we focused on life – Our passion is cruising, and we took multiple cruises. Throughout our final time together she never stopped smiling and enjoying life. My sense is that she wanted the children, grandchildren and me not to worry or be sad.
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BK Books replied:
Hi Peter, thank you for sharing. What memories you now have of your time together. Blessings to you and your family. Barbara
My wife died after 5 days in Hospice on 9/11/23 so I can relate to your journey. When we realized she had a terminal condition with an expected due date, we focused on life – Our passion is cruising, and we took multiple cruises. Throughout our final time together she never stopped smiling and enjoying life. My sense is that she wanted the children, grandchildren and me not to worry or be sad.
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BK Books replied:
Hi Peter, thank you for sharing. What memories you now have of your time together. Blessings to you and your family. Barbara
PETER ACKERMAN, II
My wife was diagnosed with PSP, a neurological disease with no cure. She was in the final stages of the disease; she couldn’t speak and was having difficulty swallowing. She was admitted to the hospital and diagnosed with a septic blood condition and failing kidneys. I made the difficult decision to honor her living will and place her in hospice (where I was given a copy of your “Gone from my sight”). I was by her side when she died peacefully 5 days after admittance. God spared her the terror of dying a violent death from her neurological terminal condition.
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BK Books replied:
Peter, I’m glad you had support and guidance during your wife’s last days. Blessings to you. Barbara
My wife was diagnosed with PSP, a neurological disease with no cure. She was in the final stages of the disease; she couldn’t speak and was having difficulty swallowing. She was admitted to the hospital and diagnosed with a septic blood condition and failing kidneys. I made the difficult decision to honor her living will and place her in hospice (where I was given a copy of your “Gone from my sight”). I was by her side when she died peacefully 5 days after admittance. God spared her the terror of dying a violent death from her neurological terminal condition.
———
BK Books replied:
Peter, I’m glad you had support and guidance during your wife’s last days. Blessings to you. Barbara
April
People at the end of life deserve our honesty and loving attention. Dying is a challenging part of our life journey. There is such a disservice to both the patient and family when we hide death away like a horrible failure. It is not at all a failure! I am a hospice aide. Not long ago, I was physically caring for a lady when she passed away. It was truly a sacred moment. I felt deeply honored to be present. It is sad that our culture is so afraid of something that is as natural as birth.
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BK Books replied:
Thank you April, for sharing your thoughts. I so agree. Blessings to you in the work you are doing. Barbara
People at the end of life deserve our honesty and loving attention. Dying is a challenging part of our life journey. There is such a disservice to both the patient and family when we hide death away like a horrible failure. It is not at all a failure! I am a hospice aide. Not long ago, I was physically caring for a lady when she passed away. It was truly a sacred moment. I felt deeply honored to be present. It is sad that our culture is so afraid of something that is as natural as birth.
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BK Books replied:
Thank you April, for sharing your thoughts. I so agree. Blessings to you in the work you are doing. Barbara
Linda Tavel
There is a group in my medical community who say: “We have done all we could do against your disease that would help, and now we are going to focus on…..” the implication is that further treatment might be harmful to proceed. The group makes it clear they will focus on quality of life: good days, less pain, etc.
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BK Books replied:
Good helpful guidance. Would that all medical groups were so forthcoming. Blessings! Barbara
There is a group in my medical community who say: “We have done all we could do against your disease that would help, and now we are going to focus on…..” the implication is that further treatment might be harmful to proceed. The group makes it clear they will focus on quality of life: good days, less pain, etc.
———
BK Books replied:
Good helpful guidance. Would that all medical groups were so forthcoming. Blessings! Barbara
Kathy
I am sitting here with our daughter watching My husband in hospice at home with “minutes to hours “ to go from Lewy body dementia.
Watching and listening to the rattle, etc.
Thank you for all your information.
I have enjoyed reading and listening to you.
It has helped. Thank you. Kathy
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BK Books replied:
Kathy, my thoughts are with you and your family during this blessed time. Barbara
I am sitting here with our daughter watching My husband in hospice at home with “minutes to hours “ to go from Lewy body dementia.
Watching and listening to the rattle, etc.
Thank you for all your information.
I have enjoyed reading and listening to you.
It has helped. Thank you. Kathy
———
BK Books replied:
Kathy, my thoughts are with you and your family during this blessed time. Barbara