"End of Life" Issues

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dm200
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"End of Life" Issues

Post by dm200 » Tue Sep 17, 2019 9:49 am

I recently ran across this 2009 Sixty Minutes report by Steve Kroft on the very high medical costs (mainly to the government) during the last months of life.

https://youtu.be/KW30R2g3dsc

Just as important, I believe, is the now, common or "normal" way most folks die today in the US - hooked up to machines, receiving many, expensive, tests and drugs. To me, this emphasizes the importance of having documents, such as a Living Will, to allow us to die with dignity. Just as important, I believe, is that our families know our wishes and can take action that they be satisfied.

I live about 400 miles from where I grew up - and my brother and sister-in-law still live in our hometown. They were very involved when my uncle (father's older brother, never married, always lived with our family) became terminally ill and when my father reached that point as well. Both were in their late 80's.

My uncle became ill, was hospitalized and, after multiple tests, it was determined that he had some form of terminal cancer (not specifically identified). He hated hospitals and did not want any extraordinary measured done to keep him alive. So, he came "home" - house with my father- and was bedridden. My brother and sister-in-law assisted in his care, as well as my father. They had a nursing assistant come in a few times a week as well. One evening, my father went out - and when he came home, my uncle had died - apparently peacefully in his sleep.

A few years later, my father's health deteriorated and he moved in (next door) with my brother and sister-in-law. Then, he was hospitalized and his health deteriorated. My brother and sister-in-law (especially my sister-in-law) kept up on all of the relevant issues relating to end-of-life matters and, as his condition deteriorated, updated the hospital with instructions (such as do not resuscitate). There were no "heroic measures" taken - and he died in the hospital.

Depending on applicable state law, one real issue/risk in authorizing "heroic measures" for the terminally ill is that once initiated, you may not be able to stop them (legally). For example, according to my sister-in-law, is inserting a "feeding tube" to keep someone alive when they are unable to eat (such as a serious stroke). While (the example is in NY State) there is no requirement to insert a feeding tube, once inserted - it normally cannot be withdrawn. For those in otherwise good health, a feeding tube can save a person's life, and then, when the temporary conditions (such as an injury) that prevented eating are cleared up - the feeding tube can be removed and the person is back in good health. For the terminally ill, though, perhaps with a serious stroke, insertion of a feeding tube can prolong "life", often suffering, for a long time. Since such patients may pull out the feeding tube or cause it to not function properly, such patients may have to be restrained (tied to the bed) and/or given strong medication.

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Re: "End of Life" Issues

Post by Mr.BB » Tue Sep 17, 2019 9:56 am

At a certain point you definitely want a DNR drawn up so no one can take unnecessary heroic measures to maintain your life if you don't want it.
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Re: "End of Life" Issues

Post by Mr. Rumples » Tue Sep 17, 2019 10:13 am

When we lived in Colorado, my husband and I both had separate out patient procedures at Rose Medical Center, a large hospital complex. The documents we signed included a provision that they would not honor DNR's. Rose is an HCA hospital. When I had outpatient surgery in Virginia at an HCA hospital, this provision wasn't in the documents.

When a friend of ours was dying at Lutheran Hospital in Denver, he ran into the same problem. Lutheran is part of SCL Health. They would not honor the DNR. He died in the ambulance taking him home to die; that was not his preference; he had epiglottal cancer.
Last edited by Mr. Rumples on Tue Sep 17, 2019 10:23 am, edited 2 times in total.

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Re: "End of Life" Issues

Post by LadyGeek » Tue Sep 17, 2019 10:20 am

This thread is now in the Personal Finance (Not Investing) forum (estate planning documents).
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Re: "End of Life" Issues

Post by msk » Tue Sep 17, 2019 10:27 am

IMHO feeding tubes present one of the most difficult choices our families are faced with. It all happens in slow motion. Patient has difficulties swallowing and it gets steadily worse while he remains in a non comatose state but not lucid enough to simply say no. So family says yes because they cannot withstand seeing the gagging. Once feeding tube goes in, disaster is almost assured for the next several years. Father in law took 16 years! Horrible! Difficult to know what to write in some document, because it's not like a sudden, quick choice. Slooooow motion over days and weeks.

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Re: "End of Life" Issues

Post by dm200 » Tue Sep 17, 2019 10:38 am

msk wrote:
Tue Sep 17, 2019 10:27 am
IMHO feeding tubes present one of the most difficult choices our families are faced with. It all happens in slow motion. Patient has difficulties swallowing and it gets steadily worse while he remains in a non comatose state but not lucid enough to simply say no. So family says yes because they cannot withstand seeing the gagging. Once feeding tube goes in, disaster is almost assured for the next several years. Father in law took 16 years! Horrible! Difficult to know what to write in some document, because it's not like a sudden, quick choice. Slooooow motion over days and weeks.
Yes - often a difficult and painful choice indeed -- and if chosen, almost always (as best I understand) one that cannot be "undone".

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Re: "End of Life" Issues

Post by 123 » Tue Sep 17, 2019 10:46 am

The "feeding tube" issue can be a real conundrum when a chronically ill or very elderly individual is hospitalized. While the feeding tube can provide comfort and aid recovery it can also lead to a difficult situation if a recovery does not occur and the individual moves to a permanent nursing home placement. Of course a feeding tube can also allow a frail individual to comfortably continue to live at home for an extended period of time depending on their other medical issues. As with many "End of life" issues there are no clear absolute answers for everyone.
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Re: "End of Life" Issues

Post by changingtimes » Tue Sep 17, 2019 11:01 am

And it's so hard when it's the spouse having to make a decision that is in effect not fighting for their partner to make it.

My mother had both dementia (FTD) and ALS, but physically was as strong as a horse. She started having trouble swallowing pretty quickly, and I knew without hesitation that she would have never wanted a feeding tube in that situation. And the doctors said that with her type of illness(es), a feeding tube is never recommended. And yet my father had a terrible time with it. But he managed to go with what he knew her wishes were, and she lived about a year. We did our best to get food into her, until the point where the only thing she could get down was Gatorade with ThickIt stirred in. Once she couldn't swallow that, she lasted about five days.

And when the subject of hospice was brought up for DH, my immediate instinct was to keep on fighting, even though he was stage 4 when diagnosed and we knew he was likely doomed. Thankfully we had talked about it often (especially in the wake of my mother's death) and I knew it was time, but it was still an incredibly visceral reaction. It felt like I was condemning him to his death. But, within days, it was clear that my decision made no difference, and he was gone within a week.

So, if you don't want "extraordinary means," you can put it in an advance directive, or your health care PoA, but *talk about it with your loved ones.* Because what you're really doing is giving them permission, in your own words, and not in some document. That's a real gift.

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Re: "End of Life" Issues

Post by shell921 » Tue Sep 17, 2019 12:02 pm

This is why I think anyone over age 60 should be allowed to end their life in a safe and peaceful manner.
5+ years ago my beloved husband of 39+ years was diagnosed with a rare form of cancer. He endured 39 days of agony in the hospital being "treated"
by chemotherapy and then a hospital acquired infection. He suffered terribly and so did his sister and I. Only ONE of his "team" of 'hospitalists'
doctors took me aside and said "your husband told me he doesn't want to die in the hospital - you need to take him home". So
I did and 6 days later he died at home. It was not peaceful. He was 75. His hospital bill was $685K - just for his room and the drugs and "treatments" he was given. The "team" of doctors bills were more $$. Medicare paid the $685K for his 39 day hospital stay. Supplemental insurance paid for
most of the doctor's bills - but I ended up having to pay about $5K for what was not covered. Shocking. And a nightmare.

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Re: "End of Life" Issues

Post by delamer » Tue Sep 17, 2019 12:13 pm

After my mother suffered a severe stroke while in a nursing home, the home’s medical director recommended a “do not hospitalize” order for my mother. She was bed bound and barely able to speak.

The only goal was comfort care, and that isn’t what you get in a hospital.

She already had a DNR order based on her living will, but I had to make the call regarding the hospital order.

And I did sign off on it. It was simple, but it wasn’t easy.

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Re: "End of Life" Issues

Post by RickBoglehead » Tue Sep 17, 2019 12:14 pm

Have experience with this with in-laws.

MIL had a living will with express instructions. No CPR. External shock only. No breathing machine, no tubes. She went into an abnormal rhythm that wasn't able to be controlled by her pacemaker / defibrillator. Hospital doctor (resident), kept telling us they might have to do CPR if shocking out of the abnormal rhythm stopped the heart. We kept resisting. Finally, I said in a loud voice - "you are not listening. My MIL's living will is clear. That is not her wish. Her daughter is right here, and is her medical POA. You WILL NOT violate the living will, and I will call your CEO if necessary to ensure that." External shock worked, she lived for several years more.

FIL reached a point where he was ready for hospice, and entered into it during his hospital stay. They told us they were in charge, not the doctor. They told us they would respect the DNR, no measures at all to be taken, no IVs. We came to visit and found an IV. Nurse said "we knew you would be mad, but the doctor ordered it." I called the hospice company, they had no clue. I called the doctor and asked in a not-nice manner, WTH!" He said, "I thought fluids would make him more comfortable.". My response, "you are not in charge, hospice is. You have just extended his life against his wishes." Hospice company eventually took blame, saying that nurse in training didn't communicate properly. We gave them a very bad rating when things were done.

Initially, hospice presented themselves as a way to have Medicare absorb costs, so we said no. Later we learned they would be able to control care, even at the Assisted Living location. Told them they would have had him months earlier if they had explained things from that perspective, not a "government will pay" perspective.

I agree that we should have control over the end of our lives. It was painful watching both of them wither away slowly.
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Re: "End of Life" Issues

Post by willthrill81 » Tue Sep 17, 2019 12:43 pm

It sounds to me like many potential issues (e.g. medical staff not abiding by a healthcare directive) could be headed off if those who are terminally ill just stayed at home. We certainly plan to age in place, even if that means moving to a CCRC at some point.
“It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to.” J.R.R. Tolkien,The Lord of the Rings

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Re: "End of Life" Issues

Post by shell921 » Tue Sep 17, 2019 12:53 pm

willthrill81 wrote:
Tue Sep 17, 2019 12:43 pm
It sounds to me like many potential issues (e.g. medical staff not abiding by a healthcare directive) could be headed off if those who are terminally ill just stayed at home. We certainly plan to age in place, even if that means moving to a CCRC at some point.
Yes - right on. Once the "hospitalists" get ahold of you in the hospital, they will do so many things to prolong life - even of a terminally ill person age 70 or older! Frightening!

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Re: "End of Life" Issues

Post by KlingKlang » Tue Sep 17, 2019 1:05 pm

willthrill81 wrote:
Tue Sep 17, 2019 12:43 pm
It sounds to me like many potential issues (e.g. medical staff not abiding by a healthcare directive) could be headed off if those who are terminally ill just stayed at home. We certainly plan to age in place, even if that means moving to a CCRC at some point.
I thought that when you were at a CCRC that they would automatically transfer you from independent living to assisted living to skilled nursing when THEY determined that you required it.

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Re: "End of Life" Issues

Post by willthrill81 » Tue Sep 17, 2019 1:08 pm

KlingKlang wrote:
Tue Sep 17, 2019 1:05 pm
willthrill81 wrote:
Tue Sep 17, 2019 12:43 pm
It sounds to me like many potential issues (e.g. medical staff not abiding by a healthcare directive) could be headed off if those who are terminally ill just stayed at home. We certainly plan to age in place, even if that means moving to a CCRC at some point.
I thought that when you were at a CCRC that they would automatically transfer you from independent living to assisted living to skilled nursing when THEY determined that you required it.
Not necessarily if you have a hospice waiver in force.
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Re: "End of Life" Issues

Post by Broken Man 1999 » Tue Sep 17, 2019 1:09 pm

MIL passed at our home, under the watch of Hospice. I can't thank the organization enough for their assistance in her last few weeks of life. An absolutely awesome organization. Even four years later we sometimes get a visit from one of MIL's Hospice team.

What will/won't be honored by the hospitals where one is most likely to be a patient should be investigated. Around our area there are a couple of hospital groups involving the Adventists and the Catholics. I imagine one is more probable to have a DNR ignored at one of the hospitals affiliated with religious groups. However, that is speculation on my part, and I do intend to check.

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Re: "End of Life" Issues

Post by lernd » Tue Sep 17, 2019 1:13 pm

Possibly slightly off topic, but the book "Being Mortal" (By Atul Gawande) is a fantastic read with direct applicability to the tough questions. I think families, across generations, should read it as as starting point for discussions about end of life.

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Re: "End of Life" Issues

Post by SuzBanyan » Tue Sep 17, 2019 1:16 pm

We went thru some of this recently with my 86 year old mother. Extreme abdominal pain sent her to the emergency room and ultimately, she had surgery to remove a cancerous tumor. She had a central nutrition line IV, then another surgery, a discharge home for several weeks, another hospital admission, another surgery, another central nutrition line, another discharge home for several days, then an admission to treat kidney failure. At this point, hospice was discussed, but before my Mom made a decision one way or the other, she started getting better and was discharged home again.

After a total of about 60 days in the hospital over 4 months, she is feeling much better and has booked a Caribbean cruise for next month.

As others have posted, it can be hard to tell when the time has come to recognize that nothing more can be done or even that a further hospitalization would be counter-productive. Treatment during my Moms last hospitalization consisted of IV treatment and regular blood draws to monitor kidney function. As much as she hated being in a hospital setting, that treatment did the trick for her. While her life expectancy is still limited, her quality of life is back.

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Re: "End of Life" Issues

Post by dm200 » Tue Sep 17, 2019 1:23 pm

A very related issue is the change in medical treatments that are available now, or in the future, that were not available in the past. These can work both ways - they can just prolong an inevitable death OR can return a seriously ill person to a productive life.

My grandmother, for example, had a stroke at age 87 (back in 1963) and was in the hospital for several months not able to communicate and barely able to eat or drink much. We were part of the same household and when she had the stroke, she was functioning very well every day - helping cook meals (farm meals three times a day), enjoying television and being active. One aspect of her life at that time that hindered her a lot was vision - she had cataracts and they did not normally do that surgery on elderly patients. She died about 60-90 days after suffering the stroke. Today, however, she would probably be able to be kept "alive" for a much longer time. The damage from that stroke, however, would probably still be such that she would have a very, very poor quality of life by being kept alive.

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Re: "End of Life" Issues

Post by dm200 » Tue Sep 17, 2019 1:25 pm

SuzBanyan wrote:
Tue Sep 17, 2019 1:16 pm
We went thru some of this recently with my 86 year old mother. Extreme abdominal pain sent her to the emergency room and ultimately, she had surgery to remove a cancerous tumor. She had a central nutrition line IV, then another surgery, a discharge home for several weeks, another hospital admission, another surgery, another central nutrition line, another discharge home for several days, then an admission to treat kidney failure. At this point, hospice was discussed, but before my Mom made a decision one way or the other, she started getting better and was discharged home again.
After a total of about 60 days in the hospital over 4 months, she is feeling much better and has booked a Caribbean cruise for next month.
As others have posted, it can be hard to tell when the time has come to recognize that nothing more can be done or even that a further hospitalization would be counter-productive. Treatment during my Moms last hospitalization consisted of IV treatment and regular blood draws to monitor kidney function. As much as she hated being in a hospital setting, that treatment did the trick for her. While her life expectancy is still limited, her quality of life is back.
Wonderful for her -- and you! An example of the complexity of the matter.

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Re: "End of Life" Issues

Post by increment » Tue Sep 17, 2019 3:03 pm

For my father, "assisted living" is primarily a residential institution, not a medical one. So any time a medical situation threatens to exceed their limited capabilities, their unbending procedure is to send residents to the emergency room. Even if, in some cases, they are under the care of hospice!

His DNR order is explicitly stated on an official pink POLST form. But when he gets sent to the hospital, will anyone make sure that it goes with him? Will any emergency physicians look for it in their records? I never count on it.

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Re: "End of Life" Issues

Post by LilyFleur » Tue Sep 17, 2019 4:08 pm

changingtimes wrote:
Tue Sep 17, 2019 11:01 am
And it's so hard when it's the spouse having to make a decision that is in effect not fighting for their partner to make it.

My mother had both dementia (FTD) and ALS, but physically was as strong as a horse. She started having trouble swallowing pretty quickly, and I knew without hesitation that she would have never wanted a feeding tube in that situation. And the doctors said that with her type of illness(es), a feeding tube is never recommended. And yet my father had a terrible time with it. But he managed to go with what he knew her wishes were, and she lived about a year. We did our best to get food into her, until the point where the only thing she could get down was Gatorade with ThickIt stirred in. Once she couldn't swallow that, she lasted about five days.

And when the subject of hospice was brought up for DH, my immediate instinct was to keep on fighting, even though he was stage 4 when diagnosed and we knew he was likely doomed. Thankfully we had talked about it often (especially in the wake of my mother's death) and I knew it was time, but it was still an incredibly visceral reaction. It felt like I was condemning him to his death. But, within days, it was clear that my decision made no difference, and he was gone within a week.

So, if you don't want "extraordinary means," you can put it in an advance directive, or your health care PoA, but *talk about it with your loved ones.* Because what you're really doing is giving them permission, in your own words, and not in some document. That's a real gift.
+1. And if I have severe dementia, I do not want antibiotics for pneumonia, which can happen when a dementia patient aspirates. Advance directives are very important. Also, very important: caregivers who make sure the hospital receives the advance directives and that the doctors follow the patient's wishes. It was very difficult when the hospital "lost" my parent's advance directive just one month after their previous stay. Vigilance is really important.

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Re: "End of Life" Issues

Post by InMyDreams » Tue Sep 17, 2019 4:57 pm

There are so many factors in "withdrawing therapy". Circumstances. Family. Doctor. Hospital. State law. Federal law.

Remember Terry Schiavo?
https://en.wikipedia.org/wiki/Terri_Schiavo_case

I've seen therapy withdrawn a few times, and been on the periphery of the decision making a few more. There are so many factors in the decision making.

Discuss your wishes with your family.
Complete the paper work.
Talk with your doctor.
Make sure the hospital has a copy of the paper work.

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Re: "End of Life" Issues

Post by Moland » Tue Sep 17, 2019 6:12 pm

My parents had "no feeding tubes" added to their POA

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Re: "End of Life" Issues

Post by mrb09 » Tue Sep 17, 2019 6:37 pm

Broken Man 1999 wrote:
Tue Sep 17, 2019 1:09 pm
MIL passed at our home, under the watch of Hospice. I can't thank the organization enough for their assistance in her last few weeks of life. An absolutely awesome organization. Even four years later we sometimes get a visit from one of MIL's Hospice team.

+1. I can't say enough good things about Hospice. They were invaluable in my mom's last days while she was at home.

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Re: "End of Life" Issues

Post by Fallible » Tue Sep 17, 2019 6:42 pm

There are good books and blogs that can help us prepare for end-of-life issues. Four books I've read and would recommend all show how difficult it is to prepare for every eventuality. They also show not just what patients and their families and friends are up against, but the pressures their doctors and other medical staff also face.

-Being Mortal by Atul Gawande, M.D.

-Your Medical Mind: How To Decide What is Right For You, by Jerome Groopman and Pamela Hartzband, husband and wife M.D.s

-How Doctors Think: a follow to the above by Jerome Groopman

-Do No Harm: Stories of Life, Death, and Brain Surgery, by Henry Marsh, M.D.
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Re: "End of Life" Issues

Post by GAAP » Tue Sep 17, 2019 6:51 pm

My mother immediately created a living will when they first became an available option. She updated it every few years as requirements changed. She made a point of reminding me and my brother of her wishes. She also annually hand wrote, signed and dated a statement describing her wishes -- keeping all of the copies so a historical record could be shown. In addition, she made sure that her normal doctors were also aware of her desires.

The hardest thing for me was actually convincing a hospital doctor that I understood the ramifications of a DNR order.
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Re: "End of Life" Issues

Post by Turbo29 » Tue Sep 17, 2019 9:42 pm

Interestingly, I came across this article just the other day:

Letting Go
What should medicine do when it can’t save your life?

https://www.newyorker.com/magazine/2010 ... tting-go-2

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Re: "End of Life" Issues

Post by TheDDC » Wed Sep 18, 2019 12:21 am

The problem with the premise of this thread is I have approached this from the other side with my mom. She had good docs and bad docs. The good docs improved her life and did their jobs. The bad ones would do barely more than lift a finger and say she's just going to die, "oh yes I've seen this before... they pretty much just die." That didn't happen, and she recovered well.

If your loved one gets a diagnosis/sentence (really what it is) of death my recommendation is to gather all medical records and run them past a competent attorney. Medical malpractice is common, especially those in "advanced stages". Document everything and show up and log copious notes of conversations with all medical staff.

The issue is when you have a society where "death with dignity" is soaked into the culture, it also soaks into the medical profession and creates an ethic of not lifting a finger when a patient reaches a certain age. You would get more prompts to "do the right thing" (expressed or implied) which is highly insulting. I would not want to see that, and at that point our medical system would basically be useless for anyone over 70.

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Re: "End of Life" Issues

Post by BolderBoy » Wed Sep 18, 2019 10:32 am

Prolonging life vs prolonging death.

It isn't always black/white decision making.

DNRs are problematic in many situations. What brought the person to the point of needing resusc. How much resusc do they need to come back to baseline? Will they get back to baseline with the resusc? If someone is going to be DNRed oughtn't they be moved to comfort care and/or hospice?

These questions are pondered frequently by medical folks.
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Re: "End of Life" Issues

Post by LadyGeek » Wed Sep 18, 2019 11:34 am

This is a sensitive and emotional topic, but please remember this is a financial forum. Try to keep your comments focused on estate planning and financial issues.
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