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LINK A bad death: the importance of truth-telling at end-of-life

A bad death: the importance of truth-telling at end-of-life

ALTHEA HALCHUCK, APRIL , 2022

“Death would not be called bad, O people, if knew how to truly die.”
— Nanak

Her funeral was yesterday, and there was a huge turn-out. She was 67 and never cussed or said a bad word about anyone. She was much-friended and well-loved. In late January 2022, she was diagnosed with stage-4 cancer in her lungs, which metastasized to her liver and bones. At first, some medico used the word “terminal” and talked about “comfort care.” After all, cancer in locations is news everyone dreads, and she was already having severe breathing issues from pneumonia. While in the hospital, they did an MRI and CT scan, and the family was told they had to wait for the results, so they waited, but they all knew how bad it was. She said she just wanted to go to the beach one last time and hug her grandkids, all under age ; born days before her diagnosis.

Instead of meeting with the palliative care team, who most likely would have recommended hospice, oncology took the lead.

She and her family met with her oncologist a week or so later. Instead of meeting with the palliative care team, who most likely would have recommended hospice, oncology took the lead. As is often the case, different doctors look at symptom management differently. The palliative care team supports the patient’s body, mind, and spirit, optimizing the quality of life for patient and family while reducing suffering in the final months or days. The oncologists focus on the disease and how to treat it. To them, failure is not an option.

They are holding out false hope while fighting against precious time.

Her oncologist “talked her into” taking the latest immunotherapy treatment, not a cure, but something to make him feel like they were doing something in an effort not to fail. This is not the first time I have heard this; it happens more often than not in my end-of-life work. Once she started the treatment in mid-February, he assured her and the family she’d feel better, and her appetite would return once the drugs kicked in, maybe “6-8 weeks.” They held out false hope while fighting against precious time. The treatment made her feel worse and delayed her going into hospice.

I could see how this was going to play out but could do nothing to stop it. I sent articles on comfort care, palliation info, and hospice benefits, but it was her decision to try to treat. Her daughters, who adored their mother, told me individually that they thought she should have been on hospice from the start. confided, “how do you tell your mother she should be on hospice?” Instead of making the most of the time she had left, which is the promise of hospice, she told them she didn’t want to “disappoint” her oncologist by “giving .”

The tumors were winning and taking over her lungs.

She went into the hospital ER again for a severe breathing problem brought on by another pneumonia. This hospitalization was the final time. The generalist in a small rural hospital couldn’t believe she wasn’t already in hospice. He said her death was “imminent.” The tumors were winning and taking over her lungs. Even without tests, he could see how she was struggling and suffering. She went into hospice that afternoon. The hospice nurses, as usual, called it right; she had just a day or left. The tumors finally won.

Many oncologists promise the moon and give people false hope, essentially lying because their discipline sees death as failure and not a natural part of life. Her daughters told me they wished the oncology doctor had told their mom and family the truth and not “lied about some miracle therapy.” Dr. Atul Gawande, in his seminal work, Being Mortal, is seen talking to the widower of his cancer patient, Sarah, a new mother who died from lung cancer. She spent her final week enduring brain radiation and was scheduled for more experimental therapy. Dr. Gawande told the husband he regretted telling them an experimental lung cancer treatment might also cure her thyroid cancer. He says the reason he regrets it is “because I knew it was a complete lie. I just wanted to have something positive to say.” The husband said he regrets chasing useless therapy after another, always hoping for that elusive cure but, in doing so, sacrificing any quality time they might have had.

She died in the hospital with her family around her, but everyone had a bad death.

In their hearts, her daughters just wanted their mother to make the most of the time she had left. She never made it to the beach or hugged her grandchildren. From diagnosis to death, it was short months. During those weeks, she waited for results, went back and forth to the hospital to drain her lungs, and was on infusions for a useless Hail Mary treatment, all of which robbed her and her family of precious time to talk about what mattered most. She died in the hospital with her family around her, but everyone had a bad death.

Althea Halchuck is a patient advocate and founder, Ending Well! Patient Advocacy. She focuses on end-of-life care and planning, aiming to help people have a “good death,” and can be reached at the Final Exit Network and on LinkedIn.

HippieChick58 9 Apr 23
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7 comments

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1

I have been hoarding pills since the '70s., I might have a qualude or 2 left in the stash. As more drugs have been developed & the easy access makes it much easier to plan my departure on my terms. With opioids & benzodiazepines available I have enough to kill a brontosaurus. But a few will do as so many have discovered. It is a painless manner upon which to return to the big compost pile that is the Earth.

Beware! I have looked into this and it is Very likely that after you lose consciousness your body will regurgitate most of what you ingested, leaving you with brain and organ damage but not dead...and also under psychiatric care.
By all means do what you need to do, when you want to do it, but use 2 methods in tandem.....for example drowning or suffocation simultaneously in addition to the pills so your body cannot betray you.

@AnneWimsey Absolutely. Iwas a member of the Hemlock Society now under a different name. One wants to envelope in a plastic bag so as to account for a clean up. Also a plastic bag over the head to ensure the demise. I would choose an isolated area with a note. Let the vultures dine on my remains. Or I could move to one of 7 states where it is assisted legally. There are options that were not available until land of the Switzers legalized it. This all depends my health at the time. I don't want government involved in my personal decisions.

2

There are so many what ifs around the end of life care for a patient. I think Drs need to be brutally honest.
I knew a lovely man with three small children. He had already had one tumor removed from his brain. He then had a second one removed. When the third grew he asked the Dr what are their chances of getting rid of it. They said it was good but the area of his brain it was growing in was the language centre removing it meant removing a large portion of the healthy brain tissue. This man's field of interest and job. So he could have it removed and not be able to work or possibly talk to his children for the rest of his life and there was now no guarantee that another would not grow again. So he decided to not have the surgery and to travel around Australia with his family packing in as many memories as they could. Eventually this tumor would start to press on other parts of his brain and kill him. He got 18 months before he required on going care and then hospice care. The children knew that they were only going to have their father for a short while so they had time to process what was going to happen.

If medicos are honest then the patient can make the choice according to what they want.

The truth hurts and many would say that the medicos can not be certain that it will fail (or succeed) but you can give odds and let people make up their own minds. You can be told that their is a 10% chance or a slim chance and if people want to grasp at that then they can.

3

I just went through this, in the hospital my father and I discussed what to do and I encouraged the choice of hospice. He was comforted by the familiar surroundings of his home and I was his primary caregiver. A medical assistant and retired nurse I hired privately allowed me some breaks as hospice didn't provide care, just visits. It was a great decision.

MizJ Level 8 Apr 23, 2022
1

This may not be how you or many others would want to die and I can't say I'd want to die this way either... but, that doesn't mean it isn't what this person wanted. Maybe she wanted to go out fighting the cancer. Regardless of her choices chances are she would not have made it to the beach anyhow. And it seems a bit of a stretch that any of this prevented her from hugging her grandchildren. And also regardless of her choices, her death would almost certainly been bad. Cancer rarely (if ever) gives anyone a pleasant death.

I wouldn't want to be the one to tell someone to skip treatments and dismiss any attempt to overcome cancer and simply let it run its course. The chances of beating cancer with no treatment are extremely slim... about a 0.001%.

Please read my reply above. For my grandmother, aunt, and father it was the best decision, the comfort of home as opposed to the alternatives.

4

Nice article, thanks. I started planning over 20 years ago to have a good death. I hope to pull it off. If not, I have the documentation in place that hopefully will avoid a bad scene.

6

My father has Non-hodgkin's lymphoma.
He decided a few months ago to discontinue treatment.
He's at home, receiving hospice care, and living his life as he sees fit.
He didn't consult his children, but I completely support his decision.
It's not up to us. Although, when he told me that's what he was doing, I told him I would do the same.
His life, his choice.

Too bad Georgia doesn't have the humane Death with Dignity program.

@JackPedigo Thanks, but it doesn't matter.
He lives in Texas, of all places.

That's what my father died of. He was in remission for three years but paralysis then began in his feet and worked up. You made the right decision. Peace to you.

5

There is all too much of this in America. For too many people, the majority of their medical spending occurs at the very end of life. We have an unhealthy attitude towards death, and a system that can best be described as "sick-care," not healthcare.

I've told me kids I want it simple and quick, no life support, no drastic measures. Just keep me comfortable and let me drift away. And cheap please, save what money I have for the future.

@HippieChick58 Hugs not drugs 🙂

@Flyingsaucesir Depending on who it is, hugs can be the best drugs.

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