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>All to say, having an advocate that help you with your wishes when you're in a weakened state feels like it is pretty huge.

I think it is effectively, required for most hospital stays. Even a fully capable individual with all that is going on in a hospital would IMO find it really hard to hear every important word, understand every context, and would struggle to make truly informed decisions.

When my son was 6 he was in the hospital for an illness that we still don't entirely understand (thankfully he recovered completely and is doing well). My wife or I were there the entire time. We got updates from the local university, other doctors from other hospitals.

Just updating my wife with all the details was absolutely mind mindbogglingly hard to really convey all the information accurately. When we were there together it was even harder for her to keep up.. in person.

I felt like I had an advantage as in my line of work I do a lot of troubleshooting, so change this, observe that, check this after that, accounting for tradeoffs of making some decisions, and the methodology totally made sense to me. My wife not as much.

I feel like there's a need for a medically trained advocates to really help people with these kinds of things.

The necessity of understanding and aggressively arguing for your medical care is a real shame here in the US and IMO most of the reason why we see worse outcomes for certain minority groups with heart attacks etc not getting sent to specialists at the same rate. My experience is some doctors and staff actively welcome you participating but some don’t and you never know which one it is.

Living outside of the US, advocating for your own care is actually good. When I lived in Asia you generally don’t question what your doctor says, you just do it.

Thats certainly true in my experience in Japan, though there they are usually hyper conscious of doing procedures correctly so I don’t know if it would be better or worse.

Yup, I would echo this strongly. My wife ended up in hospital just before Christmas a couple of years ago, and she’s an extremely quick professional but between the emotional impact and the sheer volume of information she just couldn’t keep up. I did a bit better and kept up with the various prescriptions, test results, dosages, etc. Behind me there was a whole family team processing this — mom a nurse for 20+ years, her best friend an ER nurse for similar, a cousin that was a specialist in a related field, etc. All from 3000km away.

In the end, we lucked out that in the ER the first night we had a wonderful specialist who really took on the primary role in her care going forward, and the “shadow” family team stood down. And this was for a relatively simple issue that within 24 hours was determined not to be life threatening! I have so much more empathy for families in really challenging situations like yours now, just the sheer volume of information..

Reading your post felt like I was reading my own experience. My mom just passed away a month ago from stage 4 stomach cancer after a brief, hard fight.

> Having an advocate

There aren’t enough upvotes in the world to highlight this! The average person never understands until they go through it. My dad, my brothers, and I were her advocates. At one point, laying the facts out to the doctors who were delaying some of her tests due to “insurance requirements” (false) and pleading with them that it felt like my mom was being forced to advocate for her own life at a time when she should be taken care of by the “experts”!

We took shifts, around the clock, getting visitation exceptions to at least have 1 person sitting in the room with her at all times. Because the doctors had the amazing ability to burst into a room and present options to a half-cognizant woman suffering from cancer and expect her to make a decision there-and-then.

> I can’t imagine what would have happened if me and my siblings weren’t able to help her.

The exact thought I had as I walked out of the cancer ward past all the other rooms filled with people, laying there, alone. No one to advocate for them.

There’s just a dizzying amount of information, decisions, staying on top of doctors, following up, describing symptoms such that nurses / doctors actually check to rule out new causes (e.g. describing stomach pain and lack of bowel movements over multiple days before they finally checked her stomach and found a blockage due to a new tumor in her intestine)... it’s hard to imagine how anyone could get along alone in a hospital with a complex case.

Overall, the hospital experience left a bad taste in my mouth.

I was happy that my mom knew she was loved by all of us though, and I got be bedside and talk with her for her last couple weeks. I never thought I’d lose my mom this early, but I’m glad there wasn’t anything left unresolved between us. She knew I was proud of her; she knew she was the best mom a son could ever ask for in my eyes. I loved her.

I first encounter this subject through Being Mortal https://www.goodreads.com/book/show/20696006-being-mortal

It was the most important perspective I gained

>> Having an advocate >There aren’t enough upvotes in the world to highlight this!

My experience exactly, and repeatedly. I am old enough now to have spent many hours in the hospital next to family members. I don't say this to increase anyone's anxiety about hospital stays, but the care is better when close allies are there throughout stay.

Your post rang true. I just lost my mom last week and the hospital experience was a very similar situation.

The doctor was particularly upset because I was a healthcare proxy (that was the first thing he asked when bursting into the room) and complained that he just talked to my brother who was also a healthcare proxy.

It took a good several minutes until I explained that I was only there to visit my mom. You know, that human thing? Why I dressed nice and brought flowers? He complained some more and then pivoted down the hall, trailing two silent, masked students in his wake.

“We took shifts, around the clock, getting visitation exceptions to at least have 1 person sitting in the room with her at all times. Because the doctors had the amazing ability to burst into a room and present options to a half-cognizant woman suffering from cancer and expect her to make a decision there-and-then.”

I Also lived through this doing night shifts every night for months switching with family members who all are in the medical or medically adjacent fields, having the fire hose of information shot in our direction for medical decisions that had to be made 24/7 For my intubated father in a medically induced coma for cerebral hemmoragic stroke.

The amount of Medical staff that visited at all hours of the day and night to take blood samples, do breathing treatments for intubation, soiled gown changing at their convenience (they would simply let your loved one sit in their soiled gown at odd hours of the day which leads to UTI and life threatening Septic shock had I not been their to sound the alarm).

All this plus medical errors at nursing shift change are very real concerns and happened shockingly often to us with wrong doses, late doses, miscommunications, etc. it is truly dizzinging and terrifying to say the least and my heart goes out to COVID patients who had family blocked from being bedside to advocate for their care prior to vaccine development.

Life is truly short, having stared the death of loved ones in the face you know your time will come to be in that same hospital bed. Make your time on this planet count. Forget the adtech and user manipulation/deception/surveillance gigs and use your software dev superpowers for doing good things to look back on from your hospital bed. That’s how my perspective has changed to live my life moving forward helping others with my tech skill set is truly humbling.

My aunt passed from cancer a few years ago but it seems like it was just yesterday. She did chemo for a long time and other treatments and was absolutely miserable. When she finally decided to "stop fighting" many in the family were horrified or even angry, but I get it. I would much rather go out comfortable and early than live a little longer in misery. Quality over quantity.

My father died of liver cancer, and even with hospice it was a horrid, painful, death.

It was 16 plus years ago, and I can’t get his suffering out of my mind.

I didn’t even like (I loved him though) my father, but know one should go through what he did. My sister was lowering his dose of medication because she wanted him to spend time with her kids. In all honestly, I believe she wanted him awake, and miserable, so she could get his estate together. Meaning—she wanted more?

The whole process was just awful. His death completely destroyed a very fragile family.

When he first went into the hospital he was basically given the bad news. He had a huge liver tumor. His stomach was greatly distended. That didn’t stop doctors coming in and palpating the mass. I think they were using my father’s condition to learn what a liver tumor felt like? Multiple people were palpating the mass, even after the scans? I finally said it’s hurting him?

He got his death sentence. We left the hospital. A few weeks later a Dr. told him he would operate on him. We went to the appointment. The doctor gave this sanctimonious speech about drinking. My father was obviously very sick. My father said his drinking days were over. I felt the lecture from this doctor was completely unnecessary. My dad left the appointment happy with hope. A week and a half later he got a call from the doctor stating he couldn’t do the surgery. My dad had a Cadillac medical plan, but the doctor said he couldn’t do the surgery.

All I can add is California passed a Death with Dignity bill. When it’s my time I will use it.

My belief is that we will forever be a backward race until we decide that our ultimate goal as a society should be to ensure as much as possible that every single person be able to pass peacefully, without suffering or abuse (accidents and other sudden deaths notwithstanding, since not all such things could be prevented). I believe external factors have much more of an effect on the in-the-moment experience of death than anyone realizes (many people place that squarely in the realm of religion, which I find a shame, as it prevents people properly talking about death because they see such discussions as challenges on their religious belief).

There is a movie where the dad is dying of cancer. First the son brings him heroin to the hospital and later near the end they all come together and he overdoses and dies in peace. That's the way I want to go out. I have seen people who died in hospital with all kinds of machines hooked up, constantly being probed and relatives telling to keep "fighting". It probably depends on your personality but I prefer to go out at my own will in peace (and high on drugs). I don't want to keep fighting.

"The Barbarian Invasions" Great Canadian film from Quebec.

Are opioid overdoses really peaceful and painless to the person ? Genuine question.

To add: hospice is one of the few nearly fully subsidized gov't healthcare benefits we have in the US (yay Medicare).

https://www.medicare.gov/coverage/hospice-care

Couldn't agree more re: patient advocacy. My mom wrote a book -- a bit of a how-to guide -- for being effective in this role after her experience doing as much guiding her mom through terminal care for dementia.

http://speakingupformom.com/

I'm glad to hear that she was able to find at least some comfort in her final days. I experienced the opposite with mine a few years back. It was a slow spiraling brutal decent of misery. Hope was hard to reason against at the time. There was so much confusion with a clusterfuck of snowballing issues. I don't think we considered or were presented with a less painful and more peaceful option at the time. I'm almost positive everyone including her would have preferred that peaceful route.

> She got all the morphine she wanted, and various other comfort measures.

Something I don't understand: why don't they start with that? Why wait until you're near death? I'm assuming there's a good reason but I'd also hope we have the technology and chemical engineering know how to create pain killers they can be used for long term care effectively.

If anyone has any links/expertise I'd love to understand this component.

> I'd also hope we have the technology and chemical engineering know how to create pain killers they can be used for long term care effectively.

Because once you’re receiving palliative care there isn’t much concern about hastening your death. So the side effects of morphine like constipation, respiratory depression, sleepiness are lower priority to comfort.

The sad truth is that we don't have any good painkillers. Current painkillers are either weak or have strong side effects. Source: I have incurable cancer (not yet in any pain) and did a lot of research on every aspect of it (including future pain management.)

I’m very sorry for your loss, and I’m glad to hear you were able to improve your mom’s quality of life in her final days.

I’m very sorry for your loss. Losing a parent is incredibly difficult.

I just wanted to say that I am so sorry for your loss.

I hope you're doing okay. Sorry for your loss.

> having an advocate that help you

Just highlighting this in case people overlook it, since it's a very important concept.

If one of your friends or relatives is ill, going to the doctor or hospital alone should be considered a mistake. The advocate ensures enough questions are asked, despite the condition of the ill person.

I talk to a lot of people in developing countries who have little money, and I tell them to take their ill relative in a taxi or rideshare to a clinic, do whatever tests are necessary, and take them home if possible.

That way the patient can get the most out of the healthcare system for a minimal, controlled expense before checking in.