I received a letter from a woman whose father recently died. She explained all the surgeries, medical interventions, TPN, gastrostomy, multiple catheters, medicines, and hospitalizations that she, her father and their family dealt with over an 18 month period.
She lamented that no one in the medical arena, except one woman who used to be a hospice nurse, talked with her or her family about her father dying. There were many different medical interventions offered.
As horrific and overwhelmingly sad as this experience was for this family, I'm sorry to say it really is quite typical of our medical system.
Today, our medical model is to fix diseases and problems that people have. If they can't eat, we tube feed them. If they can't pee, they get dialysis. If they can't poop, they get medical intervention for that. We try to fix people until the body just finally quits and even then we often try to restart the heart.
How tragic that none can come forward and say, "Your father is dying. Let's stop all these extras and keep him comfortable”. Family as well as many individual physicians do what so many do---try to fix the body even when there is no fixing.
Hospice and End of Life Doulas work outside the medical model. Hospice says “try to fix people within reasonable limits, BUT when we see (and we do eventually see) that a person can't be fixed, stop treating and provide comfort”.
The hospice nurse was able to recognize that this man was dying. He was in his 80's with all of the physical challenges that come with this advanced age. This man was dying--and dying naturally.
He lived a long life and his body was being overwhelmed with disease. His body was dying and would die no matter how many medical interventions were tried. The medical system simply prolonged his dying and his suffering.
Our body is programmed to die.
What happened here infuriates me. This person and family suffered and are still suffering, as do so many, because no one (except one nurse) had the courage to tell the truth. This man couldn't be fixed and would die.
Something More About… Medical Interventions on a Body That Can’t Be Fixed
I have a dvd that I wish was used in more medical schools, THIS IS HOW PEOPLE DIE. Nurses, Doctors, Surgeons, Internists… would all benefit from watching. It is not a failure to die. But we do fail the patient and their family if we don’t offer comfort care when we know that it is time.
8 comments
Liz
The mother of someone I know was moved from memory to support to the hospital after contracting COVID on top of kidney failure and open wounds. As the daughter relayed to me, doctors and others encouraged her to place her mother in hospice care. The daughter refused and argued against it – “keep her alive as long as possible.” Such an orientation pains me. It was cruel, selfish, and unrealistic. Ugh.
———
BK Books replied:
Liz, I wonder how much time was spent educating the daughter about end of life. Did she have support in making the decision or did a medical person just ask if she wanted a DNR. What does “encouraged” mean. “We suggest”, “Here are your choices”? Was it a sit down, lengthy conversation that helps support and guide families to a more compassionate decision? The hard part is after having a comprehensive discussion we then have to support and guide the family in the outcome of their decision. Blessings! Barbara
The mother of someone I know was moved from memory to support to the hospital after contracting COVID on top of kidney failure and open wounds. As the daughter relayed to me, doctors and others encouraged her to place her mother in hospice care. The daughter refused and argued against it – “keep her alive as long as possible.” Such an orientation pains me. It was cruel, selfish, and unrealistic. Ugh.
———
BK Books replied:
Liz, I wonder how much time was spent educating the daughter about end of life. Did she have support in making the decision or did a medical person just ask if she wanted a DNR. What does “encouraged” mean. “We suggest”, “Here are your choices”? Was it a sit down, lengthy conversation that helps support and guide families to a more compassionate decision? The hard part is after having a comprehensive discussion we then have to support and guide the family in the outcome of their decision. Blessings! Barbara
Debbie Wellman
I have a therapy dog and we were asked to visit a young woman who had just become a quadriplegic. We spent a lot of time with her and got to know her and her family. She also has a disease called FOP and she was not doing well. We were there when the dr came in and talked to the family. He said all he had to say but never once said there’s nothing else we can do, she’s dying. He just kept saying it’s up to you now to the family. They had no idea what he was really trying to tell them. Had he been dr/man enough to say it out loud to the family this young woman would have a much more peaceful death and the family would have had much better memories from her end of life. How can the medical professionals be educated on dying. Seems like it should be part of their training.
———
BK Books replied:
Hi Debbie, you are right, knowledge of end of life needs to be part of a medical education. Communication skills would be appropriate also. I think the fact that the medical model is to treat disease, to fix disease, the person who has the disease gets lost in the medical goals. Blessings to you and your Therapy dog in the good work you both are doing. Barbara
I have a therapy dog and we were asked to visit a young woman who had just become a quadriplegic. We spent a lot of time with her and got to know her and her family. She also has a disease called FOP and she was not doing well. We were there when the dr came in and talked to the family. He said all he had to say but never once said there’s nothing else we can do, she’s dying. He just kept saying it’s up to you now to the family. They had no idea what he was really trying to tell them. Had he been dr/man enough to say it out loud to the family this young woman would have a much more peaceful death and the family would have had much better memories from her end of life. How can the medical professionals be educated on dying. Seems like it should be part of their training.
———
BK Books replied:
Hi Debbie, you are right, knowledge of end of life needs to be part of a medical education. Communication skills would be appropriate also. I think the fact that the medical model is to treat disease, to fix disease, the person who has the disease gets lost in the medical goals. Blessings to you and your Therapy dog in the good work you both are doing. Barbara
Sky
Thank you Barbara. That would be amazing if those in the medical system were taught how to have tough conversations even when its uncomfortable for all those involved. The autonomy of giving the patient choice and options to choose near the end of life. For choosing a life well lived near end of life is vital. And needed.
———
BK Books replied:
Hi Sky, I agree one hundred percent. We’re trying. The more of us who speak out the more likely education will be heard. Blessings! Barbara
Thank you Barbara. That would be amazing if those in the medical system were taught how to have tough conversations even when its uncomfortable for all those involved. The autonomy of giving the patient choice and options to choose near the end of life. For choosing a life well lived near end of life is vital. And needed.
———
BK Books replied:
Hi Sky, I agree one hundred percent. We’re trying. The more of us who speak out the more likely education will be heard. Blessings! Barbara
Betty
“It is not a failure to die.” I was a hospital chaplain for a decade and saw many times a day what you describe above. So often the decision for hospice was made when there were mere hours left. A very ill pt asked me one day, “Am I dying?” I said, “Yes, your body is telling us that but not telling us when.” The pt was so relieved to know that they were reading what was happening in their body correctly. The validation helped them move on to hospice and a gentler letting go.
———
BK Books replied:
Hi Betty, If we could just get the medical model to recognise that death is not a failure. There is treating and healing to be done—healing the emotional, mental and spiritual parts of a person. We are more than just a physical body. Blessings! Barbara
“It is not a failure to die.” I was a hospital chaplain for a decade and saw many times a day what you describe above. So often the decision for hospice was made when there were mere hours left. A very ill pt asked me one day, “Am I dying?” I said, “Yes, your body is telling us that but not telling us when.” The pt was so relieved to know that they were reading what was happening in their body correctly. The validation helped them move on to hospice and a gentler letting go.
———
BK Books replied:
Hi Betty, If we could just get the medical model to recognise that death is not a failure. There is treating and healing to be done—healing the emotional, mental and spiritual parts of a person. We are more than just a physical body. Blessings! Barbara
Barbara Dunn
How can I get a copy of ‘This is How People Die? It’s not only professionals that need to read this it is Carers of those dying because Doctors want people to believe that everything has been tried and life can be extended no matter what. I want to educate myself so that I will know when its time to stop with the medical stuff and urge practitioners involved in my husbands care, that its okay to offer comfort care only. There is trust and dignity when medical intervention stops and the family and community take over.
Thank you for your guidance Barbara.
Love from Barbie x
———
BK Books replied:
Hi Barbie, You might find the DVD New Rules for End of LIfe helpful. Also read my book The Final Act of Living and/or By Your Side. Go to the website www.bkbooks.com and scroll the materials. You can see the pricing and can order from there. Blessings! Barbara
How can I get a copy of ‘This is How People Die? It’s not only professionals that need to read this it is Carers of those dying because Doctors want people to believe that everything has been tried and life can be extended no matter what. I want to educate myself so that I will know when its time to stop with the medical stuff and urge practitioners involved in my husbands care, that its okay to offer comfort care only. There is trust and dignity when medical intervention stops and the family and community take over.
Thank you for your guidance Barbara.
Love from Barbie x
———
BK Books replied:
Hi Barbie, You might find the DVD New Rules for End of LIfe helpful. Also read my book The Final Act of Living and/or By Your Side. Go to the website www.bkbooks.com and scroll the materials. You can see the pricing and can order from there. Blessings! Barbara
Audrey Joyce
I would love to see Barbara Barnes in a PBS Special that addresses end of life issues. Is this something that could be considered and PBS be approached to run at 8 pm or later? I think it would be a huge benefit. Also, wonder if Barbara does speaking engagements with hospitals and for those in medical school that dovetails into schooling and training? I think pubic speaking on this is essential for families and medical personnel alike. Talks would be good at libraries etc. and Barbara and hospice could coordinate to implement speakers so more facilities can be covered. Wonder too if Barbara coordinates with “Compassionate Choices” which supports end of life? Even a day long or half day workshops throughout the country would allow for in-depth question/answer sessions. Thank you for accepting my comments.
———
BK Books replied:
Hi Audrey, I don’t know about PBS but I am active in the education forum throughout the world—-books, podcasts, conferences, seminars as well as my blogs. End of life education in its many forms is what I do. Blessings! Barbara
I would love to see Barbara Barnes in a PBS Special that addresses end of life issues. Is this something that could be considered and PBS be approached to run at 8 pm or later? I think it would be a huge benefit. Also, wonder if Barbara does speaking engagements with hospitals and for those in medical school that dovetails into schooling and training? I think pubic speaking on this is essential for families and medical personnel alike. Talks would be good at libraries etc. and Barbara and hospice could coordinate to implement speakers so more facilities can be covered. Wonder too if Barbara coordinates with “Compassionate Choices” which supports end of life? Even a day long or half day workshops throughout the country would allow for in-depth question/answer sessions. Thank you for accepting my comments.
———
BK Books replied:
Hi Audrey, I don’t know about PBS but I am active in the education forum throughout the world—-books, podcasts, conferences, seminars as well as my blogs. End of life education in its many forms is what I do. Blessings! Barbara
Diana
So do you have any advice about how we can encourage our own doctors to be honest about the prognosis? I recall my grandfather being told his kidney cancer surgery was completely successful. It clearly wasn’t; he declined quickly and passed away within a year. I’ve never trusted a doctor since.
———
BK Books replied:
Hi Diane, have “the talk” with your primary physician before you need it. Have an Advanced Directive completed and go over it with your doctor. Tell him/her you are counting on them to honor your wishes, to be truthful about all options available in the course of your care., that you want all information and options given to you so that together you can decide on a plan of care. Tell them you want them to address medical issues realistically, to truthfully tell you the pros and cons of any recommended treatment. Also do a little “detective” work and see what your physician’s approach to treatment, palliative care and hospice is. Some doctors treat to the last breath, some recognise when it is appropriate to treat and when it is appropriate no stop and address comfort. Check their reputation. It’s out there. Another important key to care is for you, the patient and family to do your homework. Use Google or whatever source, to research your disease and options available, outcomes. Ask questions, lots of questions. Doctors work for us. Take the lead. Also bring an advocate, friend, family member, with you on all visits. You need four ears and two brains to sort out what is being said. Blessings! Barbara PS: your question is so important I think I will write a blog from this. Thanks
So do you have any advice about how we can encourage our own doctors to be honest about the prognosis? I recall my grandfather being told his kidney cancer surgery was completely successful. It clearly wasn’t; he declined quickly and passed away within a year. I’ve never trusted a doctor since.
———
BK Books replied:
Hi Diane, have “the talk” with your primary physician before you need it. Have an Advanced Directive completed and go over it with your doctor. Tell him/her you are counting on them to honor your wishes, to be truthful about all options available in the course of your care., that you want all information and options given to you so that together you can decide on a plan of care. Tell them you want them to address medical issues realistically, to truthfully tell you the pros and cons of any recommended treatment. Also do a little “detective” work and see what your physician’s approach to treatment, palliative care and hospice is. Some doctors treat to the last breath, some recognise when it is appropriate to treat and when it is appropriate no stop and address comfort. Check their reputation. It’s out there. Another important key to care is for you, the patient and family to do your homework. Use Google or whatever source, to research your disease and options available, outcomes. Ask questions, lots of questions. Doctors work for us. Take the lead. Also bring an advocate, friend, family member, with you on all visits. You need four ears and two brains to sort out what is being said. Blessings! Barbara PS: your question is so important I think I will write a blog from this. Thanks
Jennifer
This is one of the most important lessons that all clinicians need to learn! Thank you for making me aware the dialogue I can use with my patients. You are incredible!!!
———
BK Books replied:
Thank you Jennifer. Blessings to you in the work you are doing. Barbara
This is one of the most important lessons that all clinicians need to learn! Thank you for making me aware the dialogue I can use with my patients. You are incredible!!!
———
BK Books replied:
Thank you Jennifer. Blessings to you in the work you are doing. Barbara