@AmandaSingleton wrote:
Hello @GailL1 and thank you for your post. Let's talk a bit more to see if I understand the scenario you're laying out. What you're asking is if the government can somehow intervene to force tube feeding on a dying person despite having an advance directive?
Yes, the government (state or Federal) or a place where the dying might be being cared for outside the home - Hospice facility, hospital, assisted living, nursing home, speiclalized care facilities.
Is there a scenario you're thinking of where this has happened?
Here is one example but there could be any number of cases where this could happen, especially as things get worse and they may not be able to swallow or take food or liquids by mouth even when fed by hand:
Kaiser Health News:08/21/2017 - Despite Advance Directive, Dementia Patient Denied Last Wish, Says S...
Imagine having to go through all of this just to carry out the dying person's wishes - Mr. Harris lost again. The results were posted on March 11, 2018 in the Washington Post - you will have to look it up - I cancelled my subscription.
There are serious clinical, ethical, and legal implications in the kind of example you're describing and I can't really speak to your question without more facts and information. The guidelines of an advance directive are what should determine a patient's end-of-life care and this is why they are such an important part of our conversations about living and dying according to our own wishes.
That is the problem, Amanda Singleton - if a person is of sound mind when a living will or health care directive is executed, the very form of allowances - want this/don't want this - of what can and cannot be done is very limited.
End-of-Life to me, regardless of the cause, is when I am not really living - having to have others do what I once could do for my daily care - eating, drinking, bathing, talking, moving, thinking.
All fifty states and the district of columbia have laws that legalize the use of advance directives like living wills, health care proxies/surrogates, and durable powers of attorney. In 1991, the federal government passed the Patient Self-Determination Act that validated all of the states' laws. These documents allow a patient to receive care that is consistent with their desires.
Tube feeding is very specifically addressed in many advance directives. We were talking about the State of Oregon in a post earlier today. Here is a link to the Oregon Advance Directive. If you look, you'll see that this advance directive not just addresses tube-feeding, it talks about it under a variety of scenarios (what if the patient is close to death, has an advanced illness, is permanently unconscious, etc.) and gives options like "I do want tube feeding," "I do not want tube feeding," and "I want as the physican recommends."
It may not be pleasant to think about, but 1/2 of patients lose decision making capacity at the end of life. Of this half, over 2/3 face choices on specific end-of-life treatment options. A living will is what speaks for the patient when they cannot communicate about those end-of-life treatment options themselves.
Despite this, while 92% of people have heard of living wills, only 36% have actually completed them. My hope is to see these numbers shift in the future as we realize how empowering having a living will can be. By way of example, last week, Luke Perry passed away at the young age of fifty-two years. Because he had advance directives in place, his family was able to be by his side and his life was not prolonged when it was apparent there was no chance of recovery. Without the proper legal documents, it may have been necessary for his family to seek intervention from a court, particularly if family members disagreed about what should have happened with Mr. Perry's medical care.
In short, living wills and advance directives are the tool that allow us to truly be the "captain of our own ship" right up until the time of death, up to and including on decisions such as tube feeding.
Some families panic and take the dying to the ER - mostly because they cannot handle what is happening and are ill-equipted to carry out a person's wishes, even when they know them. Doctors are there to save lives - what are they suppose to do in this situation? I don't know of any ER around here that do "Comfort Care".
NPR 05/26/2017 - Can Comfort Care At The ER Help Older People Live Longer And Suffer Less?
My mother was resusitated even with DNR signs all over her (nursing home) room - but she was out of her room when the event happened. Deaf since birth and a massive stroke had taken all of her cognitive abilities, global aphasia as well as most of her mobility - 89 years old - total care.
My husband, on the other hand, had a bucket list (daughter's wedding). Once he participated in that event (to the fullest), he told his oncologist to stop all life sustaining care - I knew his wishes and was with him to the end, as hard as it was. He died (2) weeks later, here in our home, peacefully - The last thing he said to me before being sedated which was necessary was that he was off to his (next) great adventure (you would have had to know him).
Personally, I think Health Care Directives are only as good as the situation underwhich it can be used. Otherwise, all bets are off - so much for someone's final wishes.
However, I do carry mine in my wallet. Maybe I should have it tatooed on my chest.
Thanks for your wisdom but until we as FREE individuals are given more personal rights in this determination - things may still not go as planned.
CNN: My right to death with dignity at 29 - By Brittany Maynard - November 2, 2014
