Post by feistypants on Jul 12, 2013 7:55:14 GMT -5
This document, Five Wishes, is an awesome springboard for end of life care decisions. It can actually be used as a living will, or just as a means of determining what you -- or your loved one -- would want before you write a more complex living will.
I just want to add that even though I had briefly worked in hospitals, I had NO idea how exhausting they were until I was an inpatient. When I was first told to expect a week stay post-op, I thought it would provide a little reprieve and allow me to heal. Not at all the case.
The nurse's description is pretty accurate. But above all else, I just remember the sleep deprivation. The last vitals are taken around midnight and you're supposed to sleep then. Only every time you move, your IV pole alarm goes off. So unless you can sleep like a dead person, you're constantly awoken throughout the night. Then 4:30am comes and they draw five vials of blood and usually you get vitals again. Rounds with the student doctors are ~6am, with more rounds a bit later. Nursing staff change at 8am, so more vitals and a heparin shot. Naps never happened during the day. It's too loud, too bright, and there's too much going on around you.
Then there is the actual crap you're hooked up to - waking up after being intubated and on a ventilator was the worst. I wasn't expecting that. I was very disoriented and in PAIN. And the pain only gets worse as the days go by where you aren't allowed even a sip of water or ice chips. I was NPO for four days as a large NG tube went into my nose and pumped bile out of my stomach. Eventually my stomach became so irritated the tube w/ suction only pumped out bright red blood. The tube obstructs the pharyngeal swallow, so I'd feel the NG tube hit my arytenoids every time I tried to swallow my own saliva. Eventually I gave up and spit all of my secretions into a cup. I could not orally communicate and created my own communication board, where I could point to words to make requests to my then-boyfriend (spirometer, call nurse, etc).
Then you have heparin shots three times a day, which cover your body in bruises and hurt like hell. And potassium IVs burn from the inside out - I honestly felt like my veins were collapsing as a fire raged through them. I would just lay quietly with my arm covered in ice packs for the potassium infusions, which lasted 90 minutes and hurt that entire time. I thought we were supposed to habituate to pain! Then an IV went bad but my nurses didn't find it right away because they thought I was complaining about the potassium. Nope, there was a palpable cord... so then more medicine and more panic because we're worried about deep vein thrombosis and pulmonary embolism.
Either the morphine, the NG tube, or a combination left me with the worst migraine I've ever had. The pressure was unbearable and I wanted to rip the NG tube out but I knew they would just put it back in. Instead, I whimpered for anal tylenol suppositories multiple times a day and again, more ice packs.
The catheter was honestly no big deal. A little tugging upon standing, but I mostly did not notice it. Until that, too, began to collect a little tinge of blood.
Then the most astonishing thing happens.
They send you home.
No more heparin shots. No more blood draws 1-2x a day. No more potassium infusions... or any IV at all. No more spirometer. No more vitals. No more beeping every time I moved my arms.
Yeah, my dad learned to hate hospitals when he was sick. We were very lucky that he was able to die (somewhat peacefully, though cancer never allows a pretty passing) at home, under hospice care. Our hospice provider was wonderful. My dad passed at 11:55 pm, and the first thing we did was call the hospice nurse on call. She showed up quickly and took care of everything.
I am so sorry to all of you who have lost loved ones. (hug)
This document, Five Wishes, is an awesome springboard for end of life care decisions. It can actually be used as a living will, or just as a means of determining what you -- or your loved one -- would want before you write a more complex living will.
10 years ago, my GrandFIL fell down the stairs of his home, hit his head and never woke up. My GrandMIL had been living with him at the time and battling Parkinson's but could not live on her own. She moved in with her daughter and eventually to assisted living facilities. 3 years ago, she decided she didn't want to fight anymore and wanted to be done with it. No one could even help her. She had to stop eating. This poor woman had to starve herself and only accepted enough water to be able to take her pain meds. The nurses told my MIL that the water was actually going to prolong things for her by a few days. I wish there was something someone could have done to make it easier for her, but at least she died with dignity.
On the other hand, my grandfather died last April after over a decade of intensive care. He was on oxygen for years with COPD and CHF. My grandmother was of the opinion that everything should be done for him despite his obvious decline in mental and physical health. He could not make the decisions for himself. It got to the point where he could not even relieve himself without fainting because his blood pressure was so low. His death when it came was violent and not what he deserved. He died in a hospital bed that had been set up in what used to be his dining room. I don't think my mother or any of her siblings has really forgiven their mother for forcing him to linger in that way.
I know which way I would choose and I'm going to write up a living will and POA with my husband.
I just want to add that even though I had briefly worked in hospitals, I had NO idea how exhausting they were until I was an inpatient. When I was first told to expect a week stay post-op, I thought it would provide a little reprieve and allow me to heal. Not at all the case.
I hate the other side of the bed. I was just in the hospital for three days, but I had the luck of knowing my surgeons and being at a sister hospital. If I hadn't been, I can't imagine how much different it would've been.
These articles are hard to read and the discussions are hard to have, but I'm very glad now to have some guidance from my parents as to their wishes.
I do have to say, though, that it would be nice for hospitals to provide more support in making DNR and similar types of decisions. I had a pulmonary embolism (blood clot in my lung) at age 22, and I had no idea what it was, whether it was serious, what might be the short- and long-term implications, etc. I was admitted to the hospital, and I remember a hospital staff person coming to my room that very first morning when I was all alone to have me sign all the paperwork. She told me I had to decide right then if I wanted a DNR (no shades of grey; just did I want all possible interventions or nothing) but wouldn't help me step through the decision-making process, give me time to think about it, or let me talk to a doctor or my family or anything. I was on morphine by that time so I was having some trouble thinking clearly, too. It was terrifying.
Post by SusanBAnthony on Jul 12, 2013 14:01:53 GMT -5
I have experienced this a lot. My mom is a hospice nurse and I a a hospice volunteer, so obviously I lean that direction
My uncle was in a clinical trial for a bone marrow transplant and he was so clearly not going to make it. He was young and had a young daughter, so of course wanted to do everything. But in the end, it was clear he was going to die, and the clinical trial doctors just.could.not.let.go. My mom eventually invoked her POA and had him transferred to another hospital's hospice program and he died the next day, in peace.
He had a lot of the horrible icu symptoms the nurse article mentioned. C.diff, so he was shitting himself constantly. Got horrible, horrible bedsores so he was always uncomfortable. Bruised up everywhere. Etc. We straight up felt like the ICU doctors and nurses were lying to us about his prognosis. Once he coded, and despite being DNR they resuscitated him without calling my mom (POA).
Another story: my grandpa had a massive stroke. He was very catholic and very save me at any cost. He was also in his 80's. he was life flighted to a major hospital 3 hours away, in icu for weeks, lived through it but was a vegetable. My uncle, his POA, did a feeding tube for religious reasons. He finally died in a nursing home about 6 months later. Why in the world would you life flight an 80+ year old anywhere? It was horrible.
Meanwhile my to grandma's died peacefully with hospice, one at a hospital hospice floor and one at a nursing home. World of difference.
I'm not in the medical field, I'm just a regular person who watches a lot of Grey's Anatomy & ER. I think that the reason people want this gung ho herculean approach to their medical issues is that there's always a story of someone who beat the odds. How can they go through life feeling like they "gave up" on a loved one? I don't think people necessarily want to end their lives with weeks (or longer) in an ICU, in tons of pain and discomfort. I'd like to think that no one goes out of their way for that. I think they just want to "do whatever they can" (those words keep resonating in the above columns) to get to the part where a doctor can make them well again. Just get him over that infection, so he can go on to fight the cancer. That kind of thing.
That being said, thank you to whomever posted the 5 wishes thing. I need to figure out a way to discuss this topic with both my mom and my dad, who both live alone and are both over 70 years old.
This document, Five Wishes, is an awesome springboard for end of life care decisions. It can actually be used as a living will, or just as a means of determining what you -- or your loved one -- would want before you write a more complex living will.
Ok ... so, apparently you can't print that form off, because they want you to pay for it. (Understood; they're providing a great service at their site, via this tool as well as other resources, from what i can see at first glance.) So, here's a link to where you can pay for the form: fivewishesonline.agingwithdignity.org/