March 5, 2012
Thought Much About Dying?
Have you thought much about your final days, final minutes or even thereafter? I, probably like most other people have already attended more wakes and funerals than I'd ever want to. But as the great philosopher Yogi Berra said, "You should always go to other peoples' funerals or else they won't go to yours." Then again, I'm pretty sure that I don't even want anything like that. Thousands of dollars on a casket? For what? A nice box and pillows for a bag of bones? Thousands of dollars on flowers and a funeral home and all the trappings. C'mon, what a waste. Let's put that money to much better use, spend it on the living.
There's a similar sentiment to end of life health care. I recently stumbled across an article in the Wall Street Journal about how physicians die differently. Ironically enough, it's not that doctors get better end of life care, they actually often opt for less.
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. It was diagnosed as pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient's five-year-survival odds—from 5% to 15%—albeit with a poor quality of life.I'm not going to say I would make the same choice as Charlie. That's an extremely difficult choice to make and maybe it depends on where you are in life. Maybe that extra couple months means getting to see a first grandchild. It could mean any number of things. However, how often do we see people hooked up to machines and tubes and all the latest and greatest inventions in the world of medicine to keep someone "alive"? Is this really how we picture our last days? Hooked up to breathing and feeding tubes in a hospital room? I'm guessing most people hope or expect to just drift off to sleep one night and peacefully continue on. Unfortunately, it rarely happens that way. Quite often, it's our own fault.Charlie, 68 years old, was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He focused on spending time with his family. Several months later, he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn't spend much on him.
Have you spoken to your spouse or other family members about what you want to be done for you? Have you given someone else (or multiple people) the ability and right to make these decisions for you if you're unable? It's always best to make these decisions when you're clear-headed and not stressed. I have one such example.
I was very close with my own grandmother. She was getting into her 80s and had failing health. She had a number of issues going on, not the least of which was untreatable leukemia. Similar to Charlie described above. She worked her career as a nurse and has seen that quite often "the cure is worse than the cause" and decided she'd just ride it out. She also decided to keep that condition from our family for most of the rest of her life.
One day, she called and asked me to go to the doctor's office with her where she needed me to sign some paperwork. She wanted me to be second in charge (after my mother) in making end of life decisions for her. She finally explained her condition, along with her physician, and said she didn't want any more life saving procedures. She signed the "Do Not Resuscitate" orders. She even half-jokingly threatened to haunt me from the afterlife if I let her die after being hooked up to machines for weeks for months. I believed her. I accepted my responsibility, signed the paperwork and kept a copy.
Less than a week later, with my mother out of state, I got a phone call at 6:30 am from my grandmother that she wasn't feeling very well at all and was going to the hospital. She asked me to meet her there. This one sounded different, she sounded worse than normal. Just in case, I brought all the paperwork with me and I got there a few minutes after 7. As soon as I got to the ER and explained why I was there, the nurse said my grandmother was being prepped for surgery. I immediately got to her room where a surgeon was just wheeling her out to the operating room and explained to me that she had massive bleeding on her brain from the leukemia and needed emergency surgery now to relieve the pressure. With surgery, she might survive but without it she definitely would not.
I handed the paperwork to the surgeon, he read it, asked if I was sure, I said yes, and that was it. A few hours later, she was gone. About the only positive thing, or at least the only reassuring thing that happened all day was that her original physician, the one I'd met with less than a week before stopped in to see my grandmother and me. He offered his condolences and just looked at me and said, "You did absolutely the correct thing."
There was no extended suffering, there were no heroic measures, there was no stringing it out artificially. Her time had come and she made her choice, I was merely the spokesperson for her.
So take a read through the linked article, give it some thought, and help the people who will be put in the same spot. Let them know what decision you want to make, so they will not have to decide, in a stressful and emotional situation. Give them the reassurance that they too are making the right decision.
Addendum: If you'd like to read more about this need for decision making, Jessica David (@JDinRI) sent this additional article along: http://hbr.org/2012/01/tackling-social-problems/ar/1
Our culture is very schizophrenic in some ways. It's okay to weigh 250 pounds, eat a fried diet with no nutritional value, binge drink every weekend, get no exercise, watch television all night, basically do everything to send your health spiraling into a ditch, but then when we're on our way out, our lives all of a sudden become ultra-precious to us and need to be extended at any cost, regardless of quality. One of the "fixes" to our broken health care system is taking a more reasoned and responsible approach to our own mortality. I'm still young and I have my DNR signed - organ donation too. I like to think that in the same situation, I'd make the same decision as Dr. Charlie. Life comes with a death sentence, sometimes it's just a little earlier than we would hope.
Posted by: Dan at March 5, 2012 10:11 AMOutstanding post, Patrick.
There are absolutely diminishing returns for advanced medical procedures. All too often, patients and family members are not well informed on this issue and are not prepared to advocate effectively on their own behalf.
Posted by: Ken Block at March 5, 2012 10:27 AMMedical care providers have a perverse incentive to charge-up as much care on a dying person as they can. I heard that 40% of Medicare spending was for patients who were terminal and should be on palliative care.
Personally, I find it repulsive that taxpayer-funded health care is covering $250K operations for that have 15% efficacy rates, on the elderly and frail. Meanwhile, a twentysomething working two jobs without health coverage (like most of my friends) gets a $4,000 bill for a broken leg.
Posted by: mangeek at March 5, 2012 10:54 AMDan,
I know nothing about psychology but you have to wonder if they don't experience an epiphany that they really screwed up their own lives and desperately want a second chance.
Patrick,
Great article. Some how I was appointed the 'spokesperson' for the family. Not sure how and it wasn't by seniority. While both are in decent health, I know at some point I will need to discuss these issues with them. No one really wants that job and I commend you for doing the right thing. Sometimes it's hard to let go.
They should have an interview with everyone who is enrolling in Medicare. In the interview, you'd be asked a simple set of questions addressing the level of care you want, the results going into your file. This alone would be well-worth the cost.
Posted by: mangeek at March 5, 2012 12:06 PMI have 2 very elderly relatives both of whom are still with us years after being temporarily placed on ventilators-the dreaded "tubes". In both cases there was more than a little subtle, and not so subtle, pressure to "pull the plug".
Rest assured that if our last names were Obama, Kennedy, Whitehouse or Caprio those pressures would never have been placed. Don't be fooled-with a lot of these doctors/hospitals it IS about the money.
Interesting and thought-provoking post, Patrick. Thanks for sharing.
Though, I'm reminded that the GOP fought all attempts to include end-of-life counseling in the health care law. You know, the so-called "death panels?" It seems perfectly reasonable - and right - to counsel people on their options.
Posted by: Bill at March 5, 2012 2:49 PMWeird blog Karma, Patrick, I just posted this on my site.
Dan, great comment by the way.
Rose's lungs filled with fluid late one night. Her left ventricle was too weak to push things along. She was drowning in her own fluids. Losing the ability to breath is horrifying-the brain registers the need for oxygen but the body has lost its ability to deliver.
At one time, she could do anything, born in '22, she weathered a lot of tough times. The Great Depression, World War II, the Civil Rights Movement, marriage and family and all that goes with it; a lifetime of accomplishment, sorrow and triumph, all coming to an end in a little room in a nursing home in Providence RI.
Her family was involved, her son, his wife, two daughters and their husbands, some grandchildren and a bunch of great grandchildren. They visited, sent cards, picked her up and took her to their homes on special occasions, but they can't always be there, and she enjoys the independence and privacy she gets at the nursing home. Her blood relatives are scattered all over, asleep in their homes, some near by, some far. But none of them are there to offer comfort, when she needs it most. Now.
In a few days they will converge at somebody's house, once the services are through, and remember their matriarch, and tell stories about what a wonderful woman, wife and mother she was. They may have a toast to her memory, and her children will feel the most sorrow at her passing, her grandchildren a little less, her great grandchildren little if any. But she will be remembered fondly by all.
What matters most of all is the present, we are often told when the weight of this existence becomes too much to bear. The present is all you have. Yesterday is a memory, tomorrow a dream, but right now is a gift. It is good advice, and helps keep things in perspective when the mind starts spinning, the what if's, should have beens and could be's taking up too much space in a mind that should be at peace.
Love, the greatest gift of all is with her in her final moments, coming from Senegal, in the form of two lovely ladies, both in the prime of their lives, with little ones at home, and a grand future ahead of them. Baggage for them too will accumulate, no doubt, and joy, but at the moment all they are concerned with is the little lady in Room 452 who cannot breathe. They comfort her, and rub her back, and reassure her with their beautiful voices, so melodic it sounds as if they are singing a lullaby when they speak. Their words could be considered "Broken English," but the little English they have mastered says more in their inflection and sincerity than all of the words ever typed and stored in every database since the internet was invented. The gift of love is alive and well, and while not able to transcend the fear and sadness at present, makes it bearable.
The three are in tears when we arrive, and the spell is broken, but the love shared between two caretakers and the woman they have grown close to over the last two years lingers. The ladies reluctantly stand back, and let "the experts" take over, and administer more oxygen, and get the bag valve mask ready, and lift her from her seat, and put her on the stretcher, stick her with needles, say words they don't understand, harsh words like, "she's going to code," and "I need two for CPR."
Rose and the rescue workers leave quickly. The memory of her stays with the women from Senegal. Eventually her things are taken, but her essence remains. They think of her often, and as each new shift begins say a prayer in her memory. When a new lady moves into Rose's room, they greet her, and so begins another love story.
A few weeks later, Rose's family sends a card thanking the nursing home for all they have done. The card stays in the administrators office, the two third shift CNA's never see it.
But Rose ended her days with people who loved her as much as her family does. For some, maybe a little more.
The present truly is a gift.
My parents had living wills taht were very specific.
twenty years ago,I had to make a decision for my father as he was dying of terminal prostate cancer.
Almost twenty years later to the day i had to again make that decision for my mom who was suffering multiple organ failure and pneumonia necessitating at least two major surgeries and dialysis-I followed her wishes stated many years earlier and she passed away peacefully while being cared for by inpatient hospice-she was almost 99 years old and lived a full life and I was not going to allow her to die in pain and misery if I could help it.
Keeping someone close alive when there is no quality of life left is not an act of love.
My parents had living wills, so that took alot of pressure off. When my folks became non responsive, we kept them comfortable and were there for them for their last breath.
A friend of mine is going through so much pain as is his 89 yr old mom because some doctors said she would live after they did surgery on her blown aorta. She's been in the hospital for a month, is on dialysis almost daily, and has a colostomy bag. With the meds she's on, she is talking to her son's as if they are teens, they are in their 60's. Now she will have a long death filled with suffering for herself and family.
My mom's primary care physician,who had treated her for quite a while,called me the next day with condolences and was very supportive of my decision.
My wife also concurred and she was very close with my mom.
My wife's father has been lingering with a feeding tube and catheter since last May on "home hospice"suffering from terminal Alzheimer's Disease-he can't communicate,eat,drink,or move around on his own.He has a living will,but we suspect that the relative who is the "primary caregiver"has not given it to the hospice personnel.
He didn't want this.It has created a very poor situation and I feel bad for my wife who wants her father not to suffer.The "primary caregiver"is convinced he is doing the right thing and cannot be reasoned with.
It seems the hospice providers may be ready to withdraw and one can only guess what will happen then.
This has split four siblings,two and two on either side of the question.
I only relate this to illustrate the difficulty of these situations in some cases.
Doesn't it make sense to at least make people sign-up under one of three boilerplate philosophies (no extraordinary measures|yes extraordinary measures|allow family member ___ to decide) before people go on government care?
Otherwise, the doctors will often default to spending ridiculous amounts to 'save' someone for a few months, someone who'd prefer to go with dignity.
Posted by: mangeek at March 6, 2012 10:52 AMOtherwise, the doctors will often default to spending ridiculous amounts to 'save' someone for a few months, someone who'd prefer to go with dignity.
Posted by mangeek at March 6, 2012 10:52 AM
My personal experience is that the default position of doctors is to repeatedly "ask" the family to sign a "no tubes" paper. Repeatedly, to the point of harassment. I'm sure if we had signed, we would have never been "asked" again.
I have 2 relatives in their 80's who are walking around, one for 10 years, the other headed to a family vacation to Vegas in a few weeks after being on those "tubes".
Neither would be with us if we didn't reject the "advice" of doctors and insisted on the use of those dreaded "tubes" that everybody tell you that you are are callous and cruel about insisting on.
I wish I had a dollar for every time a "medical professional" told us "we don't ever want to put a person on a ventilator".
Bull***. It's all about the money.
Tommy-I have to say the doctors treating my mom never suggested what I should do.
They explained what the medical facts were and the outlook,which was extremely grave.
Fortunately,my mom and I had discussed this situation when she was healthy.
In my father's case it was the same-he was of sound mind to the end but in so much pain that even Dilaudid tabs weren't working-he was at home until the last day.
In both cases I felt the doctors were honest and trying to do their job correctly.
Doctors are just people-there are good and bad doctors and quite a few mediocre ones.
I've had experiences with all kinds due to a succession of serious medical problems since 1981(didn't keep me from a full career)but I tend to remember the good ones most.
Tommy-I'm not minimizing your experiences-mine were just different.
"It's all about the money."
Um, explain to me how a doctor makes money by having a patient go into hospice care or die?
In my (limited) experience, they're much more likely to suggest all manner of insane medical procedure even when the end is clearly inevitable. Those are procedures that actually make doctors and hospitals money, since they get billed-back to medicare.
The doctors you dealt with probably weren't in it for the money, maybe they just needed more free beds?
Also, they erred on the wrong side. I would never suggest that 'being on a ventilator' alone is cause to 'pull the plug'. I'd deal with a ventilator for a while if there was hope of coming back.
Posted by: mangeek at March 6, 2012 2:55 PM"The doctors you dealt with probably weren't in it for the money, maybe they just needed more free beds?"
That may well have been it. We heard constant background chatter about lack of space in the ICU.
In any event, if our names had been Obama, Whitehouse, Caprio or Kennedy the badgering would have never occured. That I am sure of.