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End-of-life communication is a skill that must be practiced and honed
I wish that CD allowed me to post this in multiple threads and also post the entire article
Please take a few minutes to read this incredible story
Make sure that your wishes for end of life care are known by your family and have a Medical Durable Power of Attorney with your wishes clearly stated
We just revised our Will and Trust. During the conversation with our attorney, he brought up that we had to revise our Power of Attorney and Medical Power of Attorneys because the wording needed to be changed due to new state requirements
Talk to your family and doctors (and lawyer) before it is too late for you to do so
Which state and what were the new "requirements," and who's requiring anything specific?
From what I've seen, the problem is more with the family not being willing to let go than the doctors not wanting the patient to die.
My paternal grandmother had a disabling stroke last April. She was 87 with very advanced dementia. She laid on a gurney in the ED for ten to twelve hours before triaged.
She would have been better off to die then. Her quality of life and the "essence of who she was" was gone long before this. Prior to the stroke, she could at least get up, get to the bathroom, eat, and had a few moments of relative lucidity here and there. After the stroke, she was effectively paralyzed on one side of the body, couldn't eat, and her organs effectively shut down over the next few weeks, probably from the malnutrition and dehydration after the stroke.
Of course, the daughters wanted to keep her alive as long as possible. They stuck their heads in the sand for years about her dementia and underlying issues.
Yes, this sadly is often true.
Americans in general have problems with accepting death. They themselves and or family see death as something that can be "cured" or at least should be fought to the end. Towards that goal even when themselves or family member clearly is dying they won't give up on treatments, sign DNR order, etc.. In short wanting to keep or remain alive even when nature or God clearly will win in end.
"Dr. Byock leads a team that treats and counsels patients with advanced illnesses.
He says modern medicine has become so good at keeping the terminally ill alive by treating the complications of underlying disease that the inevitable process of dying has become much harder and is often prolonged unnecessarily.
"Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse. Most generally, it's having someone you love die badly," Byock said."
In 1963 Jessica Mitford (one of the famous Mitford sisters) published a book called "The American Way of Death". In in she exposed how the USA funeral industry reaps huge profits by inflating costs of death.
End-of-life communication is a skill that must be practiced and honed
I wish that CD allowed me to post this in multiple threads and also post the entire article
Please take a few minutes to read this incredible story
Make sure that your wishes for end of life care are known by your family and have a Medical Durable Power of Attorney with your wishes clearly stated
We just revised our Will and Trust. During the conversation with our attorney, he brought up that we had to revise our Power of Attorney and Medical Power of Attorneys because the wording needed to be changed due to new state requirements
Talk to your family and doctors (and lawyer) before it is too late for you to do so
Have posted and stated this before, but am doing so again for those who may have missed.
If one has pre-paid or otherwise made final arrangements chose carefully and make sure to extent possible things are locked down legally.
Glaring case was in this documentary about Los Angeles county coroner's office.
Ronald Eugene Tanner was a single older man living alone with no immediate family.
Suffering from terminal illness Mr. Tanner did everything right in putting is affairs in order. This included prepaying for final arrangements and burial. Upon his death officials at cemetery where Mr. Tanner had made (and paid for) burial (with his family), says "no". His remains cannot go there because plots are full and we don't know who is in that space. Tell you what we'll do, Mr. Tanner's remains can be buried in a spot "near" his family. Mind you this place took Mr. Tanner's money promising one thing, but guess since the dead cannot bring legal action....
This happens time and time again. People prepay for final arrangements (cremation, burial, etc...), but when time comes funeral home, cemetery or whoever refuses to honor contract. This is especially true if say funeral home in question was sold between time prepayment was made and actual death. This and or if current funeral home director believes deal was priced too low and seeks to extract more money.
It was too long ago and I do not remember. This was in the 70s
Surgery for ESRD. Two types come to mind. One is a kidney transplant, which would be the desired outcome for ESRD patients who are eligible for that, not all patients are. The other surgery would be, I think, relatively minor, involving the creation of an accessible fistula ( generally in the arm, IIRC) that can be used repeatedly ( access for the dialysis needle and tubing) for the dialysis process instead of repeatedly having to puncture patient veins.
My BIL has ESRD and is undergoing peritoneal dialysis at home, it's done at night while he sleeps. That involves a catheter connection into the peritoneal cavity, which is another surgery.
Surgery for ESRD. Two types come to mind. One is a kidney transplant, which would be the desired outcome for ESRD patients who are eligible for that, not all patients are. The other surgery would be, I think, relatively minor, involving the creation of an accessible fistula ( generally in the arm, IIRC) that can be used repeatedly ( access for the dialysis needle and tubing) for the dialysis process instead of repeatedly having to puncture patient veins.
My BIL has ESRD and is undergoing peritoneal dialysis at home, it's done at night while he sleeps. That involves a catheter connection into the peritoneal cavity, which is another surgery.
if someone was dying no one would offer an organ transplant. and this was in the 70s we now learn so, no.
if the pt had ESRD I'd suspect (or hope) they already had a fistula. that is not surgery though, it's a procedure.
From what I've seen, the problem is more with the family not being willing to let go than the doctors not wanting the patient to die.
My paternal grandmother had a disabling stroke last April. She was 87 with very advanced dementia. She laid on a gurney in the ED for ten to twelve hours before triaged.
She would have been better off to die then. Her quality of life and the "essence of who she was" was gone long before this. Prior to the stroke, she could at least get up, get to the bathroom, eat, and had a few moments of relative lucidity here and there. After the stroke, she was effectively paralyzed on one side of the body, couldn't eat, and her organs effectively shut down over the next few weeks, probably from the malnutrition and dehydration after the stroke.
Of course, the daughters wanted to keep her alive as long as possible. They stuck their heads in the sand for years about her dementia and underlying issues.
But without any instructions in writing from their mother, your grandmother, they probably couldn't do anything to prevent her from living. I am sorry for your loss.
I cannot comprehend as to why anyone would want an 87 year old with dementia to keep living even if it meant they were getting money while she was still alive.
But without any instructions in writing from their mother, your grandmother, they probably couldn't do anything to prevent her from living. I am sorry for your loss.
I cannot comprehend as to why anyone would want an 87 year old with dementia to keep living even if it meant they were getting money while she was still alive.
Because sadly, American healthcare systems largely is based upon providing services or otherwise doing things to people. More that is done and how long it goes on determines how much money a hospital, nursing home, physician or whoever is paid via insurance, Medicare, Medicaid...
One large reason many Americans don't want any part of national health schemes as known in Europe, Asia, Canada or elsewhere is the belief such plans come with "death panels". That is somewhere person or persons decide (based upon various parameters or formulas) who gets what sort of care and when.
In Europe, Asia or other cultures outside of USA people have long worked out death. That process or event is seen for what it is; a natural occurrence that is part of living. As such at some point those suffering from mortal illness in consultation with physicians, family, caregivers and perhaps others are simply told to "put their affairs in order" and that no further heroic efforts will be forthcoming. Goal then switches from keeping persons alive to making them comfortable so they can live out remaining time with dignity.
Hospice and palliative care are somewhat of a new thing to Americans, but have long existed in say much of Europe.
Now if someone wants to exhaust private funds in aid of keeping themselves alive (or trying to), that is of course their own affair. But far as state funds go yes, there are often panels, protocols, or whatever you want to call them that will draw a line at where healthcare funds are spent. Aggressive treatment of a 87 year old patient suffering from cancer, end stage dementia and or other comorbidities likely wouldn't qualify.
Despite spending most on healthcare of industrialized nations, USA has one of the highest rates of maternal and infant mortality.
My mother (90) went to the hospital on 12/1/23 vomiting bile and distended abdomen. She had an advance directive including a dnr. The hospital ran many tests - most of which we never got the results of. Over the course of the 5 days she was in the hospital she aspirated some of the bile and got pneumonia. On the morning of 12/6 the doctor told her she needed a ng tube. She refused. The doctors asked us to make sure she knew what she was saying and the probable outcome. She did, and she still refused. Within 15 minutes, my mom smiled at my sister and I, closed her eyes and passed away. The ng tube might have prolonged her life for a little while, but the outcome was going to be same. My mom died on her terms.
But without any instructions in writing from their mother, your grandmother, they probably couldn't do anything to prevent her from living. I am sorry for your loss.
I cannot comprehend as to why anyone would want an 87 year old with dementia to keep living even if it meant they were getting money while she was still alive.
People who have suffered strokes can sometimes heal and come back from them - maybe not 100% but good enough to return to a higher level of functioning even if that level is still not who they once were.
Probably she had been having smaller strokes for years that would drop her down a level and after a while she would get better and go back up a level.
It is hard to see your loved one suffer a setback that takes away their ability to ambulate and even eat unassisted. It's human nature to want to see the person get better.
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