Dr. Leap, Thank you for writing about a topic many are uncomfortable dealing with. You know, as a Respiratory Therapist I have dealt with dying patients throughout my career. Based on my experience I agree completely with one of the comments on here....."families would decline such efforts if they truly and fully understood the consequences". I always try to explain what 'doing everything means'. I once heard a Hospitalist, talking to a family that did not want to honor the comfort care wishes of their mother, say "you are not prolonging life, you are prolonging death".
Such an important message…I know I’m preaching to the choir here. :-)
Excessive intervention is misguided and cruel - the opposite of what loved ones would want. Families would decline such efforts if they truly and fully understood the consequences.
Been down this road multiple times in my EM career and from the other side in overseeing my father and uncle’s health descents and deaths. Have been critically ill and laid out the approach for myself.
The guiding message I share regarding care decisions with the great folks who care for my 97 y.o. mother in her nursing unit is “it’s okay if my mom dies - it’s never okay for her to suffer.” It seems to help focus care and ease decision making issues.
As a society there is a great need for more enlightened, kinder, and smarter care. Thanks for your efforts, Edwin.
In 1995, I took on the role of decision maker for my grandmother, age 95. She had experienced a “freak accident” at home in which she fractured her femur, below the previous prosthesis. In speaking with the orthopedic surgeon, she was not a viable candidate for surgery, but was casted and sent to an ECF for “rehab.” She declined rapidly at Thanksgiving, was actively dying, but an ECF nurse contacted my aunt (she was not POA or HCR), who requested her mother be sent to the hospital to be resuscitated. My grandmother was end-stage CHF. She was revived with Lasix, admitted, did not improve, and after few days, was once again traveling her actively dying trajectory. I was informed her CXR indicated pneumonia, and offered to begin IV antibiotics. I declined, requested she be discharged to her home, and the doctor was welcoming of my request. Grandma was in her home of over 60 years for approximately 7 hours before taking her last breath. Being in her own home to die was her final wish!
Now, fast forward to April 2020. My mother, now age 92, was following the same path her mother’s health (see above) had taken, but add diabetes! As my mother’s health continued to decline, as she had lost most of her vision, was now nearly deaf, and was having more frequent falls; luckily without severe injuries. I called a family meeting to discuss EOL care; she had elected me to be both her POA & HCR many years prior. My mother was against hospice care, as she believed she would get better; I never wanted to squash her hope. Reality was, she was dying. The last hospital stay resulted in yet another admission to rehab. Her ejection fraction was likely heading to very low double digits. I had to place her in the ECF portion of the rehab facility, until I could arrange in-home hospice care. She stopped eating, and became severely hypoglycemic. After about 7-10 days in the ECF, we discharged my mother to her home, under the care of hospice, and right before COVID struck the ECF FURIOUSLY! At home, mom began to gradually thrive again. She remained in hospice for 18 months … my mother died peacefully, comfortably, in her sleep, on 8 September 2021.
I miss both these women very much, but believe I gave them the dignified deaths they both sought! If my 37 years as a RN has taught me anything, it’s to listen to what is loudly unspoken, to advocate for the individual, and to educate families to respect the decisions of their loved one regarding EOL, just as they demand their own decisions be respected!
I'm 71 and not in the best health. I agree with you fully Dr. Leap. My father, mother and father in law all died peacefully when their time had come. I want the same.
It’s unfortunate, but it’s the rarest of family members that have the capacity to love enough to let the sick go quietly, with the ability to disregard one’s own hurt in impending loss
Thanks for all of the great comments! It means so much to me to have your insights.
Well said! Sometimes doing nothing but keeping your loved one comfortable is the best gift!
Thank you so much for writing this.
Dr. Leap, Thank you for writing about a topic many are uncomfortable dealing with. You know, as a Respiratory Therapist I have dealt with dying patients throughout my career. Based on my experience I agree completely with one of the comments on here....."families would decline such efforts if they truly and fully understood the consequences". I always try to explain what 'doing everything means'. I once heard a Hospitalist, talking to a family that did not want to honor the comfort care wishes of their mother, say "you are not prolonging life, you are prolonging death".
Such an important message…I know I’m preaching to the choir here. :-)
Excessive intervention is misguided and cruel - the opposite of what loved ones would want. Families would decline such efforts if they truly and fully understood the consequences.
Been down this road multiple times in my EM career and from the other side in overseeing my father and uncle’s health descents and deaths. Have been critically ill and laid out the approach for myself.
The guiding message I share regarding care decisions with the great folks who care for my 97 y.o. mother in her nursing unit is “it’s okay if my mom dies - it’s never okay for her to suffer.” It seems to help focus care and ease decision making issues.
As a society there is a great need for more enlightened, kinder, and smarter care. Thanks for your efforts, Edwin.
In 1995, I took on the role of decision maker for my grandmother, age 95. She had experienced a “freak accident” at home in which she fractured her femur, below the previous prosthesis. In speaking with the orthopedic surgeon, she was not a viable candidate for surgery, but was casted and sent to an ECF for “rehab.” She declined rapidly at Thanksgiving, was actively dying, but an ECF nurse contacted my aunt (she was not POA or HCR), who requested her mother be sent to the hospital to be resuscitated. My grandmother was end-stage CHF. She was revived with Lasix, admitted, did not improve, and after few days, was once again traveling her actively dying trajectory. I was informed her CXR indicated pneumonia, and offered to begin IV antibiotics. I declined, requested she be discharged to her home, and the doctor was welcoming of my request. Grandma was in her home of over 60 years for approximately 7 hours before taking her last breath. Being in her own home to die was her final wish!
Now, fast forward to April 2020. My mother, now age 92, was following the same path her mother’s health (see above) had taken, but add diabetes! As my mother’s health continued to decline, as she had lost most of her vision, was now nearly deaf, and was having more frequent falls; luckily without severe injuries. I called a family meeting to discuss EOL care; she had elected me to be both her POA & HCR many years prior. My mother was against hospice care, as she believed she would get better; I never wanted to squash her hope. Reality was, she was dying. The last hospital stay resulted in yet another admission to rehab. Her ejection fraction was likely heading to very low double digits. I had to place her in the ECF portion of the rehab facility, until I could arrange in-home hospice care. She stopped eating, and became severely hypoglycemic. After about 7-10 days in the ECF, we discharged my mother to her home, under the care of hospice, and right before COVID struck the ECF FURIOUSLY! At home, mom began to gradually thrive again. She remained in hospice for 18 months … my mother died peacefully, comfortably, in her sleep, on 8 September 2021.
I miss both these women very much, but believe I gave them the dignified deaths they both sought! If my 37 years as a RN has taught me anything, it’s to listen to what is loudly unspoken, to advocate for the individual, and to educate families to respect the decisions of their loved one regarding EOL, just as they demand their own decisions be respected!
I'm 71 and not in the best health. I agree with you fully Dr. Leap. My father, mother and father in law all died peacefully when their time had come. I want the same.
It’s unfortunate, but it’s the rarest of family members that have the capacity to love enough to let the sick go quietly, with the ability to disregard one’s own hurt in impending loss