Debate- End of Life

I just wanted to add in...

We have facilities attached to our hospital which range from an assisted living to a SNF. Several of the residents are nuns, and every single one of them has a POA under the head of their order and are DNRs in the case of cardiac or respiratory arrest. The DNRs are actually beautifully written, and say something along the lines of "In recognition of the life God has given me, and my submission to His will, should he choose to call me home through cardiac or respiratory arrest, or through a process deemed irreversible by my medical doctors, it is my wish that I be allowed to die in the dignity deserved by all of His fold. Death is but the final step on my journey of faith, and I face my final judgment without fear." I'm paraphrasing here, but I've read their advanced directives many times, so I'm confident that this fairly accurate. I've often wished that their openness in speaking about EOL decisions was reflected more in the Church teachings.

^^ That is really beautiful.

I work in an aged care facility with severely demented residents and in a paediatric hospice.

I took two months off from the nursing home recently to focus on uni. When I returned to work two of my residents had passed away. & some people look at you oddly when you say, "thank goodness it was Rosie. It was cruel for her to be alive. She was in so much pain." I thank goodness that her family gave her a natural course of death instead of trying to intervene at every fork in the road. She'd been a resident at the nursing home for 20 odd years, progressing through the levels of care until she was a bed ridden, doubly incontinent, exceptionally demented woman who cried so often that she had no tears left to cry. She was in pain. Pulling out all stops for Rosie would be, to me, cruel. She'd been suffering for twenty years. She didn't know her daughter, she couldn't walk or talk or read... She lay in bed, all day, everyday, for months on end, in pain. I was glad it was Rosie.

People ask me how on earth I can work in pedi hospice. & I look at them like they're mad. I love my job so much it's exceptionally difficult to describe. The facility is specifically for kids with terminal illness (i.e. who will die before adulthood.) The kids spend a lot of time at the Cottage from time of diagnosis for respite over the years and are welcome there for end-of-life, too. They and their families become part of the "Cottage family". We had one little girl, Summer, who, for some reason, was intubated and hospitalized despite her mum knowing that she was terminal. Summer spent two days in hospital before her mum requested the transfer to the Cottage. Summer was extubated and the nurses helped her mother carry her downstairs to the garden where she nursed her underneath a beautiful tree. She died half an hour later. It was really rather beautiful. (& some people ask you how death can be beautiful?)

At the moment we have a sixteen year old boy with exceptionally severe muscular dystrophy. He has a BMI of 10ish and needs position changes every 5-20 minutes because of the pain he is in. It's sad, he's sixteen - he should have his whole life in front of him. Instead, he's got the next few days. So we make those few days as beautiful and loving and fulfilling as he can. When I was on shift yesterday I sat with him and chattered away about the world (he doesn't talk much due to the pain), made up his favourite cordial for him, put on a movie and watched it with him, teased him and fostered a smile here and there. I'd hate to think that he died without smiling again.

I agree that we need to talk about death and dying more than we do. I have seen enough suffering to realize that death is not always a bad thing. We need to explain things i.e. codes to patients and families better. And at some point we need to discuss quality vs quantity of life. as others have stated, resources are not infinite.

I am currently case managing a 55 year old with ESRD. She is morbidly obese to the point of being immobile. She is non compliant with Diabetic care and diet. Her only muscles that work are those which allow her to shovel food, and she does that well. She is transported to dialysis 3 days a week via ambulance (94 miles round trip). She needs a quad bypass but, as you can imagine, is not a candidate for anesthesia, and she has been turned down by UNIS for a donor kidney. These two issues are her current focus. She spends a lot of her day on the telephone calling congressmen and consumer groups complaining that Medicaid will not pay for her care. She has accused me of helping kill her because I will not talk her doctors into operating. Her family wants little to do with her, and I cannot keep a care attendent or home health nurse with her, they usually quit after a few days. I cringe when I see how much we are spending to keep this person alive. I asked her once who she could blame for being a 400+ pound uncontrolled Diabetic with no kidney function and end-stage cardiac disease. Her doctor...... When I think of the good this money could do...... And she is not my only patient in this state.

Katie- remember "There but for the grace of God go I". Do not judge your patients. You have no idea what their lives have been like. This woman's life sounds like it is miserable. But it is ALL SHE HAS. No one has the right to take it away just as no one has the right to say to you when you are 90 and in a nursing home that you have used up enough resources- time to go. The healthy ones often live a lot longer, drawing on Medicare and Social Security for many, many years. The sick ones cost a bundle but they die young. How is this woman supposed to lose weight when she can hardly move? Yes, resources are finite, but do you want them to say that to you when you need a triple organ transplant due to some damage from some virus or accident? Sorry, too expensive. Maybe if they had ethics committees and honest communication with patients and families in all hospitals people could make better choices, but we can't shove our own opinions down their throats. As I said before, no one wants to live more than the dying. I cannot imagine facing the unknown and how it feels. Some days I think I am not afraid to die, but some days I think I can't imagine saying goodbye to those I love. No more books, no more music, no more cats, my son's smiling face gone from me. I think it would be hard to say stop my treatment.

Death is a taboo subject. It is whispered about, polite euphemisms are used instead.
Taboo subjects are rarely spoken about among family members or friends until a crisis happens.
End of life care will come into full power when the taboo recedes. When death no longer means failure (must be the doctor's fault) or blame(he didn't exercise enough).
We'll see what happens for the future.