Please help me understand how my friend died

In My Humble Opinion
1

A very close friend of mine died a couple of years ago. Here’s what down and what I’m trying to understand:

She was basically healthy, late 50’s, diagnosed initially with severe bronchitis, I think. Then pneumonia, and she was hospitalized. She remained hospitalized for a couple weeks, I think, and I believe she came home for a few days before having to return. It was discovered in all of this that she actually had stage 4 lung cancer, but it was not going to kill her immediately, at least not directly.

Her lung function just kept heading in the wrong direction, though, and finally she had to be intubated to continue living at all, but when she got this information she also got the information that she was not ever going to come off the respirator.

The day after she was put on the respirator her husband called me to tell me she was going to die and I needed to come see her immediately, which I did. She was fully alert, we practically tore each others hands off in a 90 second visit and I was hustled away.

She died within 36 hours. Her husband told me through his tears how he saw her life leave her.

Here is what I am trying to understand and get “likely” guesses about, because it is far too painful to ask about directly: she knew she was dying. It was because her lungs were failing. Did the hospital allow her to remain alert until the end, did it cause her pain? Did they sedate her to reduce the pain? How do you sedate somebody who knows they’re going to die? The whole scenario is just so hard to fathom…I thought about it for a couple of years now and I can’t figure out how it could’ve gone down…I figure there must be protocols for this and ways hospitals normally try to handle it in a situation like this when you have someone who’s dying but she’s not in a natural coma… Or will the deteriorating lung function put them in a natural coma before it kills them? I am sure some of you think this is very morbid but I want to understand for this picture and the big picture.

My sister died many years ago after having a stroke and refusing hydration and food but she fell into a natural coma, and her death was very clear how it happened and understandable because of that. Somebody being alert and aware that death is coming I just don’t understand how you deal with that.

2

It’s not uncommon for lung cancer to be associated with or predispose to serious pneumonia, for instance where an obstructing lesion is present (which can be difficult to identify by imaging).

Questions like yours mayy be resolved when the family sits down with caregivers. Physicians can use such meetings to clarify matters and eliminate misunderstandings.

I’m sorry to hear about your friend.

3

Of course I don’t know in this situation, but in the two cases I was intimate with, there were sedation drugs involved.

My mom died of cancer a couple of years ago but was not intubated. She was quite alert throughout most of it, but asked for pain medication. She was sedated and went quietly after several hours.

My wife was tanked up on morphine for much of her journey. When she couldn’t take anything by mouth they used suppositories. She was pretty much comatose for a few days and even several days before that she was only semi-responsive. I don’t know if it was due to the medication or the cancer, or both.

I think intubation requires a bit of ‘relaxing’ to prevent the gag reflex; so based on all of these things, I suspect your friend had some sort of sedative.

4

I can answer only from personal experience what happened to DesertWife who died from ALS, specifically her diaphragm being paralyzed, not cancer which has a reputation for causing a lot of pain towards the end.

ALS, for those who don’t know, strikes the anterior horn cells, nerve cells in the spinal column that descend from the brain and connect with the motor nerves that go out to the muscle being ennervated.* These are the exact same nerves that are affected by poliovirus except waking up one morning paralyzed, ALS has a slow onset and they don’t know what causes it.

Also like polio it can affect limbs or the diaphragm and if the latter, the victim will be on a respirator the rest of their life. DW had some pain in her limbs – as various muscle bundles stopped working, the remaining ones were being overtaxed – but she had no particular pain or difficulty breathing, until the crisis.

She had weakened to the point it was difficult to move around any more and a hospital bed with raising ability had been lent and placed in the living room earlier in the week by the local ALS society. That morning when I went to work she asked I leave several file folders with her papers within reach so she could go through them. When I got back that night she said, sounding worried, “I couldn’t do it.” Looking back on it I suspect her lungs had been failing unnoticed and her brain was short of oxygen.

I fixed dinner which included a fancy mushroom soup with slices in it instead of the little cubes. After dinner she began having difficulty breathing and had the impression she had inspirated one of the slices. I drove her to ER where it was quickly determined her lungs were filled with fluid. She went into surgery where the fluids were drained (over a half-liter), she was intubated and a gastric tube was also placed along with a catheter.

The doc said bluntly, “She may well not come out of this. If there’s anyone who’d like to see her, now is the time to call them.” Her two siblings and mother flew in from Iowa, her two daughters plus a husband and a life-long friend drove from California. This was all at the hospital where she’d worked until forced to stop about two months before so a lot of her coworkers also stopped by for a minute or two.

She was alert and in no apparent pain but they may have been giving her analgesics – all those tubes can be damned uncomfortable. The morning of the third day she came down with a bad headache. Since she was a heavy coffee drinker I immediately recognized it as caffeine withdrawal and with the nurses’ permission carefully fed her a few ounces of coffee cooled to tepid via a cup and straw.

She seemed to be doing well and they were going to try removing the ventilator tube the next morning. Late that night, shortly before I left her I told her the bravest thing I have ever done. “What counts is the quality of your life. Do not be afraid to stay because of the burden you’d be. Do not be afraid to go because of how lonely I will be.” She had a very active life and I knew which choice she would make since – as all the literature said – once she was on a ventilator she would never be off of it. She hated being stuck in the bed all day; being tied to a machine to stay alive would be intolerable.

I had misunderstood the schedule and when I arrived at the hospital the next morning everyone else (but the friend who’d had to return to California) was there and the ventilator shut off an hour before. Up until then and for some minutes after I arrived she seemed to be doing okay but then began to fail. The docs said they had to turn the ventilator back on or she would die.

After consultation among me and her daughters – I still have the paper with her last words on it, Does this make sense? – we agreed to follow her wishes and not put her back on the ventilator. Except for the catheter the tubes were removed and she was moved from ICU to the hospice within the hospital with a much more pleasant room at about 11am.

From then on she’d open her eyes once in a while to look around the room but mostly kept them closed while we took turns holding her hands. A nurse would come in every hour to check her vitals. About 3pm she sat up looking around but not focusing on anything then settled back down and never opened her eyes again. I suspect that was the last fully cognitive function of her brain.

About 6pm her older daughter, husband, and I went to dinner and upon our return the rest went. Before they returned, she was gone. She didn’t struggle to breathe and there were no rales; her breaths simply came farther and farther apart, shallower and shallower until the next one didn’t come. Her daughter and I who were on opposite hands looked at each other. I waited another minute then fetched a nurse who listened with a stethascope and nodded her head. The doctor called it at 7:05pm, May 25th, 1992.

I have never been the same since.

*The posterior horn cells carry sensation and touch information back up to the brain and are not relevent here.

5

I struggle myself since March 4, 1995. It’s been a lifetime ago, and I aged to an old man at 30 during that time and never again as joyous. I’ll never get over it; even though I have a new life and new happiness, there is still a great hole that I can’t even talk about.

Just wanted to say, I’m with you there, and hope there is just a tiny bit of comfort knowing that we share at least some understanding.

6

Kind of like combat veterans looking on at those who’ve never served. My sister-in-law was diagnosed with breast cancer a year afterward and underwent chemotherapy. I told my brother, “You’ve peered into the abyss but you haven’t fallen into it yet.”

2016 it resurged and claimed her in November and he said he now understood what I’d meant.

Death really sux.

7

I’m really sorry about your friend.

Since she was alert and mentally competent, she would have had choices about how much sedation and how much painkiller they gave her. Intubation is very hard to tolerate, and most people need some medication to cope with it. My mother was on a low dose of ativan when she was intubated for failure to breathe for an unknown reason. (It turned out to be myasthenia gravis, which can be treated, but she was intubated for months.)

But I think your friend probably had a degree of choice.

8

I’m sorry for the loss of your friend and the pain that these questions have caused you since then. I have some second-hand experience that may help answer.

My uncle’s last days were also in the hospital with lung cancer. When they gave him enough pain meds to make him comfortable, it impaired his breathing and his lungs would fill with fluid. He and my aunt talked over with the doctors what they wanted over those last days. There were old friends and family who hadn’t seen him yet, and their daughter’s birthday was just a few days away. His choice was to cope as best he could until after that. Then he was sedated and passed peacefully.

So my guess is that your friend’s medical team did something similar: That she and her husband took the lead, and that she chose how much pain she wished to endure to be with him and when she was ready to go.

Desert Dog, the second-bravest thing you’ve ever done is sharing your heartbreak to offer stoid some peace and understanding. Thank you.

9

My sister who just died a few weeks ago had cancer that had metastasized to her lungs. About 10 days before she died she was struggling to breathe and went to the ER. They said one lung was pretty much a solid mass. She came home from the ER, and told people she’d been told she would die within two weeks. No one had told the family that, and her oncologist hadn’t seen her while she was in the hospital. The family couldn’t figure out where she would’ve got that info. On the day she died, she began to struggle to breathe. She was told she could be intubated, but she wouldn’t come off it if she was. She refused intubation and died a few hours later.

StG

10

I’m sorry for your loss.

I don’t know if it applies here, but some people, especially younger people, can get cancer that is extremely aggressive and kills in weeks, if not days. I read about one case of a thirty-year old who developed a cough that worsened rapidly. He went to a doctor and got a preliminary diagnosis of cancer, then died before his first oncologist appointment a week later. On autopsy, they discovered his lungs were full of tumors.

Cancer can be an acute fatal illness. It’s not incredibly common but it’s very sad.

11

Yeah, metastasizing cancers are not always obvious. Arthur “Killer” Kane of the New York Dolls went to the hospital with fatigue symptoms which he thought were caused by a case of flu. He was dead two hours later of leukemia.

One of my old co-workers went from diagnosis to death from pancreatic cancer in ~two weeks. It is notorious for only showing symptoms when it is far too late to treat.

12

I can share my experience, and maybe it will help. We lost my dad a couple of years ago to congestive heart failure. He went into the hospital, and it was quickly determined that he wasn’t going to come out. He was conscious and lucid, though on pain meds. All of his kids and his sibling flew in and we got to visit, and laugh, and he even did a shot of whisky with everyone. The nurse kept an eye on him as he grew weaker throughout the day. Late in the afternoon she spoke to him and my mother, and the three of them decided it was time to ease him out of this life. She administered the drugs and he passed peacefully a few minutes later.

I’m sorry about your friend. I hope she had peace in her last few moments.

13

What I know is that they sedate you the entire time you’re on a respirator. And that you go to a kind of near-unconsciousness when your oxygen stays low, where you will respond to only the most extreme of stimuli.

It’s why I know Mom wasn’t aware. She fell asleep, and didn’t wake up.

14

At my old hospital, we had THREE patients within a matter of days who showed up in the emergency room, got a leukemia diagnosis, and died even before they could be transferred to a larger facility that could treat them more effectively. It’s memorable because all of them were women around 40 years old.

As for the OP, cancer in itself impairs the immune system, even if it wasn’t diagnosed.

And hugs to Sigene and DesertDoll.

15

ETA: When I worked at the grocery store, one of my colleagues had a distant relative who was admitted to the local hospital with symptoms of a stroke, and he died within a matter of hours. At first, it sounded like that family could have been sitting on a multi-million dollar lawsuit, until the labs work and autopsy results (the family had requested it because he had been previously healthy) came in.

He had a type of leukemia that I don’t remember what it was called, but it was diagnosed about 10 times a year in the U.S., and they’ve never come up with a treatment protocol for it because nobody has ever lived long enough for them to do so. Talk about not knowing when or how you’re gonna go.

16

The OP’s story sounds a lot like my aunt. Diagnosed with lung cancer, only way to breathe was with a machine. After 2 weeks in the hospital, she was prepared to move to a hospice facility. My cousin said she was alert when placed in the ambulance for the ride to the facility. 20 minutes later when the ambulance arrived at it’s destination, my aunt was dead.

17

When I was married DW’s younger daughter was just starting high school. When she was a junior a classmate had an ache in her forearm for no apparent reason and after a week she saw a doctor.

It was bone cancer and had already metastasized. She was dead in two months.

18

Sorry DesertDog ALS is a bitch. A friend of mine that I knew all my life, from my earliest memories, through high school, and even worked with at the same job as adults, had ALS. Took him in about 6 months from first indications, which was foot drop, where when you are walking and you bring your foot forward the toe does not come up like it normally would.

He was a great athlete, football, basketball, all of it. Pictures of him climbing Mt Hood. A humorous happy stud of a guy. He happened to live in the type of house with a carport/garage on the first floor and the living quarters on the second floor, so he was kind of trapped or had to be carried up the stairs. About 30 volunteers from our local group built him a deck with wheelchair access one long weekend. A wheelchair ramp can only rise about 1 inch per yard of length, so the ramp went around this side, and that side, and up and was really a kind of ridiculous thing, but we got it up and a deck out on top by the end of the weekend so he could be more mobile.

But it didn’t give him mobility for long and he went. Just became unable to keep breathing on his own. First diagnosis about August and gone by Thanksgiving.

They gave out tree seedlings at his funeral. I planted two, one we used for a Christmas tree one year and I have the other still going about 40 feet tall and a beautiful Noble Fir.

Not meaning to derail Stoid’s thread.

19

My mother died in hospice of pancreatic cancer a few years ago. She didn’t die directly from the cancer. The hospice workers killed her.

As her pain increased toward the end they medicated her in an increasingly aggressive level until she eventually stopped breathing.

This was a blessing and she was more than ready to go at the end.

20

First, thank all of you for sharing your thoughts and your experiences.
I am grateful to have a place to reach enough people who are willing to talk about these subjects; death is an enormous part of living, both our own and of course the deaths of others as we go through our lives. I wish we talked about it more, I think it would help all of us deal with this aspect of life which is the only truly universal experience.

This is precisely the way it happened with my sister. The hospice nurse had told us she was only hours away, so my other three sisters and my mother and I were all with her, tightly gathered around her, holding her, and we had put headphones on her playing “Rhapsody in Blue”, her favorite.

It actually was a little funny (my family is very comfortable with humor in even the darkest and hardest moments): as her breaths came farther and farther apart, we had a couple of moments of looking at each other with “Was that it?” expressions, and then she would draw another breath, which, if you can picture it, was funny.

After she died, my mother, one sister and I sat with her body as we waited for the people who were coming to retrieve her body, talking. I was stroking her arm, which was still warm… it wasn’t icky at all. We didn’t cover her face or anything, which led to another sort-of-weirdly-funny moment: her eyelids were not entirely closed, so my sister tried to do the movie-movie of gently closing them… ummm, nope. They gently opened. She tried again…nope. This made it clear why, throughout time, people have had coins or other objects placed on their closed eyes in death: to keep them closed. My sis who had tried to close her eyes was very annoyed with movies for lying to her all these years.

I was very honored and grateful to have had that experience of my sister’s death. If I can use this word , it was one of the “highlights” of my life, so to speak.

One final thing that only occurred to me recently: the sister who died was the eldest of the five of us, and I am the youngest, with 17 years between. I am now 6 years past the age she was when she died, which means that she has now become and for the rest of time will be the youngest.