Thinking about dying

[blueash]

That thread name ought to get some hits. I want to ask that you click on this safe link to an article in The Atlantic magazine. It is 2 pages and will take a bit of time to read. It is about 2 doctors at Harvard who are attempting to change the way American medicine approaches end of life decisions. It attempts to give patients, families, caregivers unbiased information on what the end of life options may be and help make choices. The videos they are making are not available thru the website, sadly, as I would have liked to have seen them.

How Not to Die - Jonathan Rauch - The Atlantic (http://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/)

[Quixote]

That thread name ought to get some hits. I want to ask that you click on this safe link to an article in The Atlantic magazine. It is 2 pages and will take a bit of time to read. It is about 2 doctors at Harvard who are attempting to change the way American medicine approaches end of life decisions. It attempts to give patients, families, caregivers unbiased information on what the end of life options may be and help make choices. The videos they are making are not available thru the website, sadly, as I would have liked to have seen them.

How Not to Die - Jonathan Rauch - The Atlantic (http://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/)

IMHO, if the crux of this issue can be summed up in one sentence, it is this one (quoted from the article):

“The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.”

I would suggest that anyone with serious concern about this subject read On Death and Dying by Elisabeth Kübler-Ross, written several decades ago. Most people remotely familiar with this seminal work remember it for her description (or definition) of the five stages of dying. However, as a Swiss psychiatrist married to an American doctor and doing her residency in Chicago back in the 1960s, she was deeply troubled by what she saw as a death-denying society in her adopted country, not just by Americans in general but by their doctors as well.

Too many—both the lay public and their doctors—saw a death as a failure, rather than as part of the natural course of living and dying, and this attitude is what Dr. Kübler-Ross sought to change in a world of 36-hour shifts for resident physicians and a highly over-structured program that medical training was like in those days, according to her. (She was my friend and mentor, both in everyday life and in my efforts, along with the efforts of countless others of like thinking, at making hospice care an integral part of the American medical scene, which without doubt it is today—but wasn't not that long ago.) According to her, she experienced some success in this goal to the point that most if not all medical colleges in the U.S. now require coursework dealing with the dying patient and his or her family.

It is extremely difficult, particularly when dealing with a younger dying person, to stand back, look at the treatment options realistically and dispassionately, and recognize when enough is enough. Unlike Dr. Volandes’ patients with advanced dementia, dying patients of all ages who are clear in their thinking really need to be listened to in terms of what they want, which may be different from the so-called “heroic efforts” represented by the quote above. And they need to be listened to by their loved ones and by their doctors—and this is more than simply signing a Living Will! I could tell you stories….

It’s my understanding that Dr. Volandes (like Dr. Kübler-Ross before him) is not suggesting withholding treatment of a dying person but rather recognizing what treatments are fruitless and unnecessary at best—and (pardon the word) torturous at worst—and giving the patient and his or her family members some clearly presented information in lay terms which may help them make more educated (for lack of a better word) end-of-life decisions. The suggestion in the commentary that follows the article about making his simply presented videos freely available in a venue like YouTube (where just about anything can be found!) makes so much sense. Why not take advantage of contemporary technology?

I am delighted and relieved to learn about the efforts of this insightful young doctor and to see, IMHO, the continuation of the efforts begun in the U.S. by Dr. Kübler-Ross and followed by others. “Quality of dying/death” can be just as important as “quality of life,” both phrases and concepts that cannot be overused!

[blueash]

IMHO, if the crux of this issue can be summed up in one sentence, it is this one (quoted from the article):

“The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.”


It is extremely difficult, particularly when dealing with a younger dying person, to stand back, look at the treatment options realistically and dispassionately, and recognize when enough is enough.

Thank you for that thoughtful reply. I edited it down just to let you know, if you did not, that there now is pediatric hospice care available including one in Fort Myers Fl Pediatric Hospice Care (http://www.hopehospice.org/Childandteenhospice/) I agree with your observation about the important role Dr. Kubler-Ross had in this conversation. (I don't know how to make an umlaut)

[Quixote]

Thank you for that thoughtful reply. I edited it down just to let you know, if you did not, that there now is pediatric hospice care available including one in Fort Myers Fl Pediatric Hospice Care (http://www.hopehospice.org/Childandteenhospice/) I agree with your observation about the important role Dr. Kubler-Ross had in this conversation. (I don't know how to make an umlaut)

Well, 500 TOTV members have looked at this thread, and no one has added anything to it. Something we don’t want to think about? Too uncomfortable? I don’t know….

No, I didn’t know about the pediatric Hospice facility in Fort Myers. But I do think back but thirty years—during our adult lives—and remember the struggle of a group of us to get the concept of Hospice recognized as useful and helpful in my part of rural NY. We volunteers were all field-based (that is, in people’s homes), and at first our “office” was an answering machine in the home of one of our members. We finally fund-raised enough to have an employee answer a phone, so that calls about a dying family member didn’t have to be messages left on an answering machine.

How far we’ve come in letting dying and death—integral parts of living and life—come out into the light. And though she was not alone, the work of Dr. Kübler-Ross really was the impetus in this happening.

(Hold down the Alt key while you press the letter “u” and then, after releasing the Alt key, press the letter “u” again. Poof!)

[Madelaine Amee]

MONEY! There is a lot of money to be made keeping people alive when, maybe, they should be allowed to pass with dignity. Until you get the MONEY out things will never, ever, change.

........... and, yes I think we keep babies alive who in the past would have been allowed to pass away, but I have never been in the position of having a child with a condition such as this, so I really should not make a comment.

I have had friends who have refused all meds other than pain killers, and who have passed with their spouse at home in peace.

This is an extremely difficult subject to raise on a chat line like this, people want to enjoy their life, not face the inevitable. We have already documented our wishes for our children to follow and that was not easy for them to accept. No one wants to accept that our time on this earth is limited.

[tucson]

Awesome post, PTL !

[Cantwaittoarrive]

I think as long as you know what you want and have an advanced directive and make sure all the correct people know what you want, your death can be a beautiful and wonderful experience. my Mother and Father both took the correct legal and family steps and the dying process for them was a beautiful, life affirming process. It helped all that experienced the process to realize that physical death is just a natural progression in our life on earth and can be embraced and celebrated just as much as a physical birth into this life

[Boudicca]

My dear father, in hospital and near the end of his brave battle fighting eusophageal/stomach cancer, asked me to take him "home to die in peace". This was back in the day when chemotherapy was in its infancy, and it was a hit or miss treatment at best. His wishes were against the hospital policy, and his doctor's parting shot hissed at me as we left was, "he's going to die, you know"... Had he not listened to one word we spoke? My father spent an entire day at home filled with visitors, singing, laughing, gifts of food and flowers. He passed peacefully away the following day.

[Justjac]

My dear father, in hospital and near the end of his brave battle fighting eusophageal/stomach cancer, asked me to take him "home to die in peace". This was back in the day when chemotherapy was in its infancy, and it was a hit or miss treatment at best. His wishes were against the hospital policy, and his doctor's parting shot hissed at me as we left was, "he's going to die, you know"... Had he not listened to one word we spoke? My father spent an entire day at home filled with visitors, singing, laughing, gifts of food and flowers. He passed peacefully away the following day.
Shrandell: What a beautiful way to die...surrounded by family and friends, singing and laughing. By taking him out of the hospital, you gave your father a extremely wonderful gift. We should all be so lucky!

[Quixote]

His wishes were against the hospital policy, and his doctor's parting shot hissed at me as we left was, "he's going to die, you know"... Had he not listened to one word we spoke?

This was such a pervasive attitude on the part of the medical profession years back. While it's much, much less common now, it's still out there. Ego? Playing God? The view that dying is a failure? Who knows?

And ... this is how it can be, should we choose to make it this way (even if it's contrary to the wishes of others):

... the dying process for them was a beautiful, life affirming process. It helped all that experienced the process to realize that physical death is just a natural progression in our life on earth and can be embraced and celebrated just as much as a physical birth into this life

Here are a few of my stories that affirmed—and reaffirmed—my commitment in my small way to making things different:

Many years ago I traveled to New York City to take a graduate course once a week and made sure to leave a couple of hours early so I could visit a youngster with Ewing’s sarcoma at a hospital there—to spend time with him and to give his mother a break. Week after week, after his mother would leave to get a bite to eat, he would plead with me, “Why can’t they leave me alone?” referring to his parents, who understandably could not accept that he was dying and let go, and the whole medical profession who were treating him or, as he saw it, beating him! After they continued to poke, prod, stick, test, operate, experiment, fill his body with poisons when in truth it was hopeless already, they sent him home to die. By that point he was so drawn into himself that he could not communicate at all. He was a high school senior.

More recently but still years ago, a man committed himself to caring for his wife with metastatic melanoma at home until she died, so she could be there with her husband and children. At one point he asked me if I (Hospice volunteer) would call her doctor and ask him to renew her pain medication prescription. I didn’t know why he didn’t do it himself, but I agreed and called and reached the doctor, whose reaction was, “What, she’s still alive?!” Then I understood why he had asked me to make the call—knowing that something like this would be the response of the MD. She turned 30 the same day songwriter-composer Irving Berlin turned 100—and she died peacefully in her sleep three weeks later. The husband woke in the morning to find their daughter snuggled in between her parents and their son snuggled into his mother on the other side of the bed. When she was in hospital giving birth to him is when the initial melanoma was noticed and diagnosed. The children turned 4 and 3 respectively within weeks of Mom’s death.

My own father’s doctor had pontificated, “A week, two week; a month, two months; six months would be a miracle.” My father, emotionally destroyed with this news, then proceeded to live for another FOUR YEARS with that axe hanging over his head. Unforgivable what the doctor did to him, no matter what his intention was. Why such specific numbers?

Much to think about, extremely difficult as it is to think about....

[Boudicca]

Thank you, "Justjac". It was a very difficult thing to do at the time, but I was honoring my father's wishes. I was blessed to see him slip quietly away, with a peaceful smile. My husband and I have explicit instructions in place to help our son, when its our time to leave our earthly bounds. Best to have it all in writing, and blessed legally.

[OnTrack]

We have all of our dying wishes/instructions/living will/advance directives in our will...so there will be no confusion.

I personally don't give much thought to dying, as when it happens...it happens. :shrug:

Here is something that sums up my view on it perfectly. :thumbup:

- Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, But rather to skid in sideways, chocolate in one hand, wine in the other, body thoroughly used up, totally worn out and screaming at the top of your lungs...

"YEAH BABY..... what a ride!" :D


.

[senior citizen]

IMHO, if the crux of this issue can be summed up in one sentence, it is this one (quoted from the article):

“The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.”

I would suggest that anyone with serious concern about this subject read On Death and Dying by Elisabeth Kübler-Ross, written several decades ago. Most people remotely familiar with this seminal work remember it for her description (or definition) of the five stages of dying. However, as a Swiss psychiatrist married to an American doctor and doing her residency in Chicago back in the 1960s, she was deeply troubled by what she saw as a death-denying society in her adopted country, not just by Americans in general but by their doctors as well.

Too many—both the lay public and their doctors—saw a death as a failure, rather than as part of the natural course of living and dying, and this attitude is what Dr. Kübler-Ross sought to change in a world of 36-hour shifts for resident physicians and a highly over-structured program that medical training was like in those days, according to her. (She was my friend and mentor, both in everyday life and in my efforts, along with the efforts of countless others of like thinking, at making hospice care an integral part of the American medical scene, which without doubt it is today—but wasn't not that long ago.) According to her, she experienced some success in this goal to the point that most if not all medical colleges in the U.S. now require coursework dealing with the dying patient and his or her family.

It is extremely difficult, particularly when dealing with a younger dying person, to stand back, look at the treatment options realistically and dispassionately, and recognize when enough is enough. Unlike Dr. Volandes’ patients with advanced dementia, dying patients of all ages who are clear in their thinking really need to be listened to in terms of what they want, which may be different from the so-called “heroic efforts” represented by the quote above. And they need to be listened to by their loved ones and by their doctors—and this is more than simply signing a Living Will! I could tell you stories….

It’s my understanding that Dr. Volandes (like Dr. Kübler-Ross before him) is not suggesting withholding treatment of a dying person but rather recognizing what treatments are fruitless and unnecessary at best—and (pardon the word) torturous at worst—and giving the patient and his or her family members some clearly presented information in lay terms which may help them make more educated (for lack of a better word) end-of-life decisions. The suggestion in the commentary that follows the article about making his simply presented videos freely available in a venue like YouTube (where just about anything can be found!) makes so much sense. Why not take advantage of contemporary technology?

I am delighted and relieved to learn about the efforts of this insightful young doctor and to see, IMHO, the continuation of the efforts begun in the U.S. by Dr. Kübler-Ross and followed by others. “Quality of dying/death” can be just as important as “quality of life,” both phrases and concepts that cannot be overused!

Excellent post. I am familiar with the work of Dr. Elisabeth Kubler Ross.