Yes, many people can have a PEG feeding tube & live for years with a normal quality of life. In my mom’s case, she had an infected bedsore on her tailbone (formed while in the hospital) that became a gaping hole you could put your fist into. She had osteomyelitis and MRSA. The doctors wanted to have her undergo surgery to debride the infected tissue, but they said we would have to go against her wishes and allow a PEG. They made us feel bad for saying no, and they even sent in a social worker to try to “help” us make the “right” decision. In all the let’s-fix-her-no-matter what, one doctor quietly told me his thoughts … thank heavens for compassion. Prolonging a life just to prolong a life? No, thanks.
I’m sure lots of people are perfectly fine with their PEG tubes. That has nothing to do with my comment that many of my colleagues in ER and ICU have strong feelings about being DNRs, most specifically with regard to vents and feeding tubes. I thought it would have been obvious that this has to do with irreversible or terminal conditions, but I guess I didn’t make it clear.
Unfortunately @Nrdsb4 many people don’t realize that advanced dementia is a terminal condition and elect to have a feeding tube placed. I’m specifically talking about totally disoriented people who no longer communicate, know family or themselves . It’s very hard to watch.
Feeding tubes and ventilators for terminal, confused disoriented people sounds like an awful combo.
I agree @HImom
People are just SO emotional about death and the end of life choices, which makes it so much harder. There is a lot of projection and guilting among some folks that makes it even harder to talk.
Some elderly have a reasonable fear that venal descendants will be too quick to pull the plug.
@TatinG As long as someone is competent, no one can pull the plug even if they do have a DNR. That’s why it’s important to be very specific with the legal documents . And that can be avoided, by not giving those family members decision making capacity.
That’s why it’s important to have a living will and choose the POA and HC POA very carefully. It doesn’t have to be the default “venal descendant” who happens to be next of kin. It can be whomever the person chooses.
If the living will is very specific, the elderly person should be protected. In the presence of a living will specifying that the patient does not want extraordinary measures taken, I’ve seen doctors nevertheless accede to the family’s wishes to keep them on life support or other unwanted treatments. I’ve NEVER seen doctors cater to a family member’s wishes to “pull the plug” early in direct conflict with a living will and advance directives. NOT ONCE.
And it happens all too often. It’s tragic.
The default (according to the MDs I know) is for healthcare providers to keep patients on life supports until everyone in the family agrees that it’s OK to let the person go. There are far fewer lawsuits that way and MDs and providers aren’t interested in getting embroiled in any lawsuits. It’s tough on the providers when the “treatments” are causing pain/discomfort and the patient is terminal. They have to try to repeatedly speak with family/HC POA about when to let the patient die.
On top of his other health problems, FIL had dementia and kept aspirating food because he forgot how to swallow. He probably could have lived a few weeks or months longer with a feeding tube, but the family decided that not eating or even wanting to eat was enough of a sign to let him go. I hope my family would do the same for me if necessary.
It was unclear to me at the time if the doctor was pushing the feeding tube, or just pushing the family to make a decision. I sort of think it was the latter.
@MomofJandL I commend your husband’s family for coming together to make a very difficult decision and putting your FIL’s needs first.
There are no easy answers–everyone has to come together to try to honor the wishes of the patient who is unable to express them and then live with the decision(s).
Last Saturday, I attended a Celebration of Life for woman who was still alive but dying of pancreatic cancer. Initially, she planned to have her Celebration in September but then moved it up to ensure she would be around. After researching her prognosis, treatments, and likely side effects, she chose to forego radiation and chemo in favor of palliative care only which she felt would give her a better quality of life with not much trade-off in terms of length of life. From a very young, vibrant, age 79 going on age 69, she has rapidly become very fragile and today is on her deathbed and not expected to last more than a few days. Last month, I thought it was very weird and that she was crazy for planning her Celebration of Life; after all, she might not pass away until next year. And now? I give her credit for her strength, wisdom, and insistence on doing things her way. I’m glad she was there for the celebration of her life.
Morrie in “Tuesdays with Morrie,” who was dying from ALS had a celebration f life while he could enjoy it was well. It does seem like a nice way to see loved ones and share love and happier times.
So doctors can ignore the patient’s living will? And what about organ donation. Say the patient wanted to be an organ donor. Can the family overrule him, so that organs are not donated? And what about the opposite. If the patient did NOT want to be an organ donor, can the family overrule that decision also and have the organs donated?
Yep. I’ve seen it happen in the face of very vigorous opposition from the family. The docs and nurses try to convince the family to do what the living will specifies, but when threats of litigation are verbalized or lawyers get involved, they cave.
Yes.
See the above response.
I’ve never seen that happen. I’ve seen families donate organs in the absence of any stated wishes, but never in opposition to a stated declaration from the patient that they didn’t want to be an organ donor.
Drs will "ignore " a Living Will if it can’t be produced by the POA . It is not enough just to say the patient has one. The Dr has to be able to see it. That’s why it needs to be readily accessible in an emergency. It doesn’t hurt if more than one family member has a copy of the document.
My Dad and sweet Stepmom of 48 years had living wills stating they wished to be DNR. I don’t think they really meant they wanted to be DNR, just that in the face of terminal or irreversible conditions that would leave them on life support, they wouldn’t want to be kept alive that way. This was revealed to me a few years ago when stepmom was admitted to the ICU and I saw a DNR bracelet on her arm. My Dad hadn’t realized that in the presence of that bracelet, nothing would be done in the event of a respiratory or cardiac arrest. Because she had treatable pneumonia but was breathing quite fast, they decided to revoke the DNR and intubate if necessary in order to get her over a hump. Thankfully, she improved and was spared mechanical ventilation.
Yesterday morning my Dad called me very early and said stepmom was breathing fast and seemed disoriented. He took her oxygen sat and it read 84%. I told him to call 911. He gave permission for CPR and all other rescue measures when the paramedics arrived and she was no longer breathing and did not have a pulse.
When I got to the hospital, they had already lost her. Yesterday was a long, emotional day, with more to come.
The best we can do is state our wishes on paper and choose our POA wisely-someone who respects our wishes, but who has the inner strength to stand in opposition to those who would think they know better.