SoylentNews is people
SoylentNews
One family's five-year battle for a terminally ill's mother's choice on how to die:
Fay Hoh Yin thought long about how she would want to die after being diagnosed with incurable stage IV T-cell lymphoma in 2014.
She and her two children, Monona and Duncan, experienced a "dress rehearsal" of what her death might be like in late 2015 when her body started to fail her. At the time, doctors believed it was Fay's cancer killing her, but her heart condition, called atrial fibrillation, was actually taking the largest toll on her body.
"I was ready to die," Fay told The Independent. "I had all the horrible symptoms; I couldn't breathe and I had no energy at all. It was very painful."
[...] Suffering was one of Fay's greatest fears when it came to thinking about her death because she watched her own mother experience a painful death in the years prior.
"I had seen my own mother suffer terribly for two years, and so that made a strong impression on me," she said. "To this day, I cannot think of the happy times easily."
Fay, who underwent multiple palliative blood transfusions during this time period, stopped them on 8 July. Hospice care was then brought into their home on 12 July.
Suffering was still a concern for Fay, but the only extreme suffering she experienced was during the final hours of her life.
"What I learned from not having medical aid in dying is that you need wonderful hospice care," Monona said. "Like, yes, my mom, to her dying day, she wanted a prescription to end her own life. She wanted that and she was angry that she couldn't have that. But, at the same time, I would say she died peacefully."
Excellent hospice support, palliative care doctors, and palliative medicine were, to Monona, what people needed to have what might be considered a "good death", something not everyone can access.
"You kind of need everything to have the kind of death my mom had, and that was extremely important to us as survivors because I'm a lot less destroyed than I was the first time she almost died," she said. "We just surrounded her with care, and she had that proverbial dying at home peacefully, surrounded by your loved ones."
[...] Monona described the four-and-a-half years with her mother as a "beautiful time" after she almost died in 2015. In her final months, Fay still found a way to use humour when interacting with her children, son-in-law, and granddaughter.
But fighting for end-of-life options for Fay, especially in her last couple months of life, cut into the time they could've spent doing other activities together.
[...] "It's a sacred thing when people die," she said. "[Fay] got there on her own steam, but we spent umteen hours wrestling with her fear. It just wouldn't have been the case if she knew, 'I have an insurance policy. If I am in tremendous pain, I will have the insurance policy' ... that would have transformed the last four or five months of her life."
This is a long -- but highly recommended -- read. Barring a catastrophic injury, how do you want your life to end?
(Score: 5, Interesting) by driverless on Monday October 05 2020, @09:33AM (17 children)
Having watched two members of my family die slowly over an extended period, with a quality-of-life of zero in the last year or two, I absolutely want to be able to choose when I go. I was like that before any of this happened, but for people who believe in life-at-all-costs it usually only takes one family member dying like this to change their minds. It's easy enough to oppose the right to die when it's an abstract concept, but when it directly affects someone you love it brings it home in a very blunt fashion.
In any case we already have assisted dying, it's called "making the terminal patient as comfortable as possible with morphine" until eventually they don't wake up any more. Having legislation to regulate it merely improves the current unregulated ad hoc practice.
(Score: 3, Insightful) by legont on Monday October 05 2020, @11:58AM
God bless we have it, but to get to the stage when they attach a bottle of morphine to your vein and give you a click button to inject it at will, one has to suffer first; a lot. Yes, I watched it. I also watched my mother die from cancer without morphine and yes, it's way more horrible, so once again - God bless we have it.
However, it is not enough. We should have a way to die so perfectly described in the book of ours - Soylent Green. We deserve dignity.
"Wealth is the relentless enemy of understanding" - John Kenneth Galbraith.
(Score: 5, Informative) by JoeMerchant on Monday October 05 2020, @01:28PM
My Grandfather and grandmother cared for his mother in their home for the last 10 years of her life. They retired early to have more time to take care of her. They hired in-home nursing assistance for the last 7 years. She was bedridden for the last 6 years, completely senile for 2, and basically unresponsive for several months. Having experienced that, and a near-death episode with a blood clot in his leg at age 72, when the clot returned a year later my Grandfather had made up his mind: they would not amputate his leg, period. Try to save his life? Yes, but amputation was not an option. So, the clot returned, he spent 2 weeks in hospital hospice care, and passed away without being a burden on the world like his mother was. The doctors professed that they could not understand his decision, but at least they respected it.
Україна досі не є частиною Росії Слава Україні🌻 https://www.pravda.com.ua/eng/news/2023/06/24/7408365/
(Score: 0) by Anonymous Coward on Monday October 05 2020, @04:51PM
Anyone interested in further reading on this topic might enjoy,
http://atulgawande.com/book/being-mortal/ [atulgawande.com]
It's a surgeon's story of learning about geriatric care (which was not part of his medical training, at all). He eventually learns why normal medical "intervention" is not always the correct thing. Also gives some hope for better alternatives to nursing homes, by looking at several different alternatives that have been started in recent years.
I found it at the Open Library and read online -- don't all rush at once to take out their copy!
(Score: 0) by Anonymous Coward on Monday October 05 2020, @04:53PM (13 children)
Just playing devil's advocate here.
1. What do you think should happen when a person who is misdiagnosed* and chose to die but turns out (autopsy?) to be curable?
2. Can people who are suicidal apply for assisted dying? Is suicidal (by definition?) a terminal illness?
Sure, five years is a long battle, but if the patient had a choice to when to die, at what point would she have chosen it? Five years ago? Would she be cutting her own life short? As in, if she didn't chose that moment, she could've "spent additional four years and 10 months doing activities together with her family." (the family is saying the last two months was hard...)
*by ALL the doctors, maybe caused by faulty equipment or diagnostic methodology. Life happens.
(Score: 2) by pe1rxq on Monday October 05 2020, @06:11PM (10 children)
At some point 'hoping for a mis-diagnose' is on the same level as 'praying the disease away'.
Respect the wish of the patient, don't be selfish.
(Score: 2) by PartTimeZombie on Monday October 05 2020, @08:50PM (9 children)
The country I live in is having a referendum on an end of life bill at our national election this month, and the anti groups are rolling out lots of those sorts of hypotheticals.
A/C above has posited the possibility of misdiagnosis of a terminal illness, despite that not being something that actually happens in the real world.
A/C above has also asked "what if" a terminally ill person makes "the wrong choice", as if that is any of his business also.
I don't know anybody who has watched a family member die of cancer who is going to vote no.
(Score: 0) by Anonymous Coward on Monday October 05 2020, @10:00PM (8 children)
Assisted dying is not about patient right. It's about the right of whoever is assisting. If it's about patient right, the patient can jump off a building or hang themselves, or however and whenever they want (but they can't, hence assisted dying.). Assisted dying involves SOMEONE who is assisting. Should THEY not care about misdiagnosis? Do THEY have all the information? How do we protect THEM (civil lawsuits from the OTHER side of the family?)? Will just saying assisted dying is legal protect THEM?
Doctors make mistakes. But how many dead people are autopsied to ensure they have the sickness that the doctors said they have. Should we, as a society, hide that possibility by NOT performing autopsy on someone who got assisted in dying.
https://www.cnn.com/2015/09/22/health/doctor-diagnostic-error-iom-study/index.html?eref=rss_health [cnn.com]
(Score: 2) by PartTimeZombie on Monday October 05 2020, @11:46PM (3 children)
No its not.
All of them. At least all of them in my country. It is part of the Coroners Act.
The rest of your comment is just flailing about trying to create some sort of objection, but is not convincing.
(Score: 0) by Anonymous Coward on Tuesday October 06 2020, @12:39AM (2 children)
Determining the cause of death has nothing to do with determining if a person had the terminal illness as diagnosed by the doctor(s). Someone with cancer can die with other complication and causes.
Here's one of the real world cases for you: https://www.theguardian.com/lifeandstyle/2015/jun/02/doctors-predict-patient-die-prognosis-wrong [theguardian.com]
(Score: 2) by PartTimeZombie on Tuesday October 06 2020, @02:07AM (1 child)
You're asserting that, but it's not true. Are you claiming that there are doctors itching to murder people? Because real life is not TV, and the end of life procedure will be overseen by doctors.
(Score: 0) by Anonymous Coward on Thursday October 08 2020, @08:34AM
You know the Hypocritic Oath don't you?
(Score: 2) by hendrikboom on Monday October 05 2020, @11:48PM (2 children)
Do the proposed assistants have the right to refuse to assist?
And if they do, are there other candidates?
-- hendrik
(Score: 2) by PartTimeZombie on Tuesday October 06 2020, @02:08AM
Of course they do, at least in the proposal we will be voting on.
(Score: 0) by Anonymous Coward on Tuesday October 06 2020, @09:01PM
https://www.ama-assn.org/delivering-care/ethics/physician-assisted-suicide [ama-assn.org]
(Score: 0) by Anonymous Coward on Tuesday October 06 2020, @08:52PM
Please tell me how you can jump off the roof when you are on artificial life support or otherwise unable to move.
(Score: 0) by Anonymous Coward on Monday October 05 2020, @09:26PM (1 child)
Suicidal people are not often productive members of society, there is no reason for the government to try to control their life. Let us die when we choose, and it's less burden for everyone. When I'm 70-80 and my body is falling apart, just give me a comfy chair and and an IV of morphine...
(Score: 0) by Anonymous Coward on Monday October 05 2020, @10:09PM
Give me LSD or GTFO.
(Score: 2) by JoeMerchant on Monday October 05 2020, @01:21PM (3 children)
Hospice (around here) has access to morphine, and they're not afraid to use it. If you're ready to go, hospice will administer what generally would be called an overdose of morphine that suppresses your respiration to a point that you die from lack of oxygen. It is done in the name of compassion, and pain relief. If you're not ready to go, tell Hospice in no uncertain terms to stay away.
Україна досі не є частиною Росії Слава Україні🌻 https://www.pravda.com.ua/eng/news/2023/06/24/7408365/
(Score: 0) by Anonymous Coward on Monday October 05 2020, @03:03PM (1 child)
I wonder how that intersects with the anti-opioid program governments were pushing.
(Score: 2) by JoeMerchant on Monday October 05 2020, @03:14PM
Everything has a time and a place where it is more, or less, appropriate.
When legislators ( / politicians ) start spouting "ZERO TOLERANCE" nonsense, they should be tossed out ASAP.
Україна досі не є частиною Росії Слава Україні🌻 https://www.pravda.com.ua/eng/news/2023/06/24/7408365/
(Score: 0) by Anonymous Coward on Tuesday October 06 2020, @09:20PM
The problem with that is that it only helps people in Hospices and palliative care facilities that have an informal policy like that or staffing that does. Not all of them do. In addition, most of those places have formal policies against them because people can and do routinely sue them for overmedicating, even when they aren't doing something anyone else would consider nefarious.
(Score: 0) by Anonymous Coward on Monday October 05 2020, @04:09PM (1 child)
Piss off God.
(Score: 0) by Anonymous Coward on Monday October 05 2020, @04:54PM
What difference will it make if you piss off an imaginary being?
-- your resident post-theological
(Score: 2) by DannyB on Monday October 05 2020, @05:41PM
Coupon good for 1 free office appointment at the Jack Kevorkian medical center.
Is there a chemotherapy treatment for excessively low blood alcohol level?
(Score: 2) by KilroySmith on Monday October 05 2020, @06:56PM (4 children)
I have a CPAP mask. They sell tanks of helium for blowing up balloons at kid's parties (but Nitrogen would work just as well). When God decides it's my time to die, but Modern Medicine insists on getting in the way, I'll put some nice music on the stereo, lay comfortably on the bed, put on the mask, and open the valve. They'll find me looking peaceful, and I'll go painlessly.
Of course, this is the USA. I could just as easily swallow a 9mm. But I don't want to leave that cleanup job behind, nor become an addition to the "Gun Deaths" statistic.
(Score: 3, Interesting) by FatPhil on Monday October 05 2020, @08:52PM
That's a good start. A bit more fine tuning is optimal. Not just something as a physical (muscle) relaxant, but also something to quell any panic response are frequently stated details. In the olden days these things were all listed in the "methods" file from a.s.h (that's Usenet's alt.suicide.holiday to noobs), which should be available somewhere still.
I've suggested that perhaps when I start to fail drastically, that I shall simply simultaniously take up the hobbies of heroin and hang-gliding, preferably somewhere scenic, such as a cliff along a coastline. I'm not expecting to be any good at either first time, but that's kinda the point.
But yes, all levity aside, after plenty of deep thought about ethics from a fairly absolute moral-relativist standpoint, I've come to conclude that one dignity that should be reserved to each individual is, within practical bounds, to chose the point of their own death. Dissuasion is fine, as long as it's guilt-free, but prevention I consider the ultimate in disrespect and removal of agency.
Great minds discuss ideas; average minds discuss events; small minds discuss people; the smallest discuss themselves
(Score: 2) by PartTimeZombie on Monday October 05 2020, @08:54PM
It is a shame you should have to resort to that.
I do need to know: Highway to Hell, or Stairway to Heaven?
(Score: 2) by sjames on Tuesday October 06 2020, @07:28AM
The helium won't likely do it. Because many kids suck the helium from balloons, the helium used for balloons often has enough oxygen added to support life. Nitrogen for welding would work since adding oxygen to it would make it unfit for purpose.
(Score: 0) by Anonymous Coward on Tuesday October 06 2020, @09:22PM
Helium commercially available would turn you into a vegetable at worst, not kill you.