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.
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
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
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
Leave a comment