I opened my newspaper this morning to this heartbreaking story: http://www.omaha.com/livewellnebraska/health/grace-in-heart-wrenching-situation-baby-brought-here-from-congo/article_f080594b-e4a3-5cfb-8e7a-afc05cd8f786.html. Healthcare issues have been in our discussions a lot lately. What we don't want to talk about is the fact that medical resources are to some extent rationed, whether under single payer, or private insurance. Especially something like organ transplants, which are initially very expensive, and are an ongoing expense for the rest of the recipient's life. The trifecta of factors working against this baby getting a liver transplant are the initial $750K cost, the shortage of donated organs (there is always more need than supply), and the lack of medical support for the ongoing care of transplant patients in the family's country of origin, the Democratic Republic of the Congo.
From the article:
"Dr. Art Caplan, a medical ethicist based at New York University, said Ticvah’s case shines a light “into some uncomfortable areas of our attitudes.”
Like: What are our duties to children? Does it matter where in the world they live? And what about the very real costs, which don’t end after surgery? Caplan said anti-rejection drugs can cost $50,000 a year."
When we allocate care to one patient, what happens if that means we are denying it to another? What do both justice and mercy require us to do?
This is a gut-wrencher. The only way forward is through something Pope Francis said in his TED talk (and a hundred other places): "People's paths are littered with suffering, as everything is centered around money and things, instead of people." The problem, as posed by we moderns, is the monetary value of MRIs and other technical equipment and, of course, medications. And the modern tendency is to see a solution to the shortage of organ donations in some kind of monetary compensation of donors. That would produce more organs, but at higher cost. High costs is the only way forward we moderns can see, and notice it does not involve sick people.
ReplyDeleteTwo approaches to helping, um, people float around, both based ultimately on money. As we learned in unagidon's seminars, insurance works by either insuring everybody or by not insuring the people who are most likely to need it. Obama tried to do the former, voluntarily; the GOP replacement will revert to the latter which is why "pre-existing conditions" has turned out to be the pivot point. Even countries that have single-payer systems run into taxpayer resistance eventually, but their taxpayers are not as blinkered as Republicans because they understand that they have skin in the game.
Leaving money completely out of the picture and putting people first (if we knew how), we would get is more life-saving actions for people who need them and fewer chin adjustments for people who want them. That would require the revolution Francis also talked about in his TED. Even covering everybody in a developed country leaves an abyss between them and a Congo baby. But I'd expect the countries that have at least made a commitment to health care for their own will lead the way long before there is any help from the U.S. Heck, we are still arguing about vaccinations for childhood diseases. I thought Cotton Mather settled that in the 1720s.
Yes, it is a "gut-wrencher". It would be a no-brainer if the baby lived in a country with adequate care.
DeleteMedical care is sometimes a "scarce" good, especially when it comes to organ replacement. One of my "best" friends in high school faced this when her son was dying of liver disease. He was 37, had been an alcoholic since he was probably 18. He had even gone to prison for a fatal DWI. His wife, who loved him, finally had enough when he started drinking again after prison, divorcing him to protect their child. Finally he went to live with his mom, dried out again, went back to the bottle. Finally he was dying. She said he was not eligible to even be on the list for a new liver because he had not been able to stop drinking for at least the prior six months. They were allocating livers to patients who had a good chance of not abusing their new one.
It was devastating for her, yet she understood the reasoning.
I wish there was a way that everyone could get the same health care opportunities regardless of money or age. When my mother was sick she wanted to be in a study of a new drug but they wouldn't let her because she was too old - they were only letting in people who would help their study be a success. There were other treatments she couldn't get too because they had decided she had little chance to survive.
ReplyDeleteI'm sorry this happened to your mom.
DeleteI don't know how old she was, but age does make a difference in how drugs work. I will not be offered Interferon because of my age; people over 60 find the side effects way too burdensome, and the odds are that we will die sooner than later on it rather than another chemo.
I think it is a given that, under single payer, the elderly will be offered less treatment than children.
Thanks, Jean. She was 75 when she was diagnosed with lung cancer. She ended up getting chemo. It moved to her brain too and she had to get radiation treatments too which gave he epilepsy symptoms. She lived for about a year and a half and worked until the last two months. She was a very strong person.
DeleteIt sounds frightening, sad, and demoralizing. Cancer always is. I really don't know how people manage to work to the end. The cancer alone causes fatigue and brain fog at the least. Throw in the effects of disease progression, the effects of chemo/radiation, and whatever palliatives they're giving and, yes, I'd say she must have been pretty tough to work through all that.
DeleteI do think there's also a strength in letting go, but our system is not designed to help people there. Oughtn't "do no harm" include giving people realistic ideas about their condition and keeping people comfortable when treatment fails?
IMO, we allocate too much to treatments that won't extend life or improve its quality and not enough to palliative and residential care. We also don't teach doctors how to help patients prepare for these eventualities.
Catholics sometimes talk about people having a "good death" but most everyone I've known who has died has been depressed, scared, and has suffered a lot. If you're listening, God, this getting old and sick and dying idea of yours really sucks.
DeleteMy friend's mother just had a good death. My friend's wife relayed to me how, in spite of the dementia, she had moments of lucidity when she seemed to realize exactly what was going on, sans fear. Morphine helped the pain. Periods of interaction with the family members, so many, I had to open up my house and wine to the overflow. But she died as she lived. Even spent some time at a Catholic Worker's farm. I think a lot of the suffering traces to drugs extending our lives way beyond our expiration dates. In the unlikely event I outlive my responsibilities, I may take a second look at the BP and cholesterol medicines. I really have no desire to make it to my 90's. I know what that looks like.
DeleteI was at a good death four years ago. Dudley was obviously dying. He came out of a surgery that had not been enough; too much was shutting down. The chaplain was called, and while we waited Dud was in and out. While he was in he knew he didn't have long, but he was in no panic. He said, among other things, that he would like to stick around long enough to see Baltimore win the Super Bowl, which was only a week or so away. When the chaplain came, Dud was mostly out, but the chaplain asked him to let us know he was still with us. Dudley said, "Amen" and died while he was being anointed. That was the perfect sign-off.
DeleteI think my mom had a good death. The year leading up to it was certainly not good. There was a problem of not getting the right diagnosis for several months. Then she tried chemo for awhile, but all it was going to do was buy some time and she discontinued it because of the side effects. Then she went home and had hospice care, and was made fairly comfortable. Friends and family came to visit. Their priest came often, and people from the parish brought Communion on Sundays. There got to be a point where she was unresponsive and was moved to a hospice room of the local hospital. Family sat with her; we were grateful to Father John who came up at 11:00 pm to anoint her and pray with the family. She lived several more days and died very early in the morning when most of the family had gone home to rest. My sister was there but she had fallen asleep. I think that was how Mom wanted to go, just slipping out the back door, so to speak, without everybody making a fuss.
DeleteAs we struggle with funding and allocation priorities, it's clear to me that a peaceful death depends on fewer interventions, a good arsenal of comfort drugs (we're not using nearly enough quantity or quality), friends or family, and perhaps some spiritual comfort. This need not involve buckets of money.
DeleteI haven't had that good death experience so I'll have to take people's word for it. I think there's a lot of pressure on people, especially religious people, to die in a way that comforts those they are leaving behind.
DeleteLike Jean says, I think too that a lot depends on money for care, family and friends who can help, and a belief system that lends structure to what's happening.
But my grandfather (heart attack at home during breakfast), grandmother (years of suffering in a nursing home with Parkinson's disease), mom, some friends, and even my four little elderly sick cats .... there was nothing comforting or good about any of their deaths except that the suffering was finally over.
This more than any other thing is what's turning me into an atheist.
I guess I don't get why an instantaneous death from a massive heart attack, awake or asleep isn't a good death. I had an uncle who went that way after breakfast. A colleague died in his sleep a week after a bypass. If I could choose, that'd be the one I'd check off.
DeleteStanley, I guess that depends on how one lived life up to that point. If they were a good person who did the best they could, sure, that would be a good way to go out. If they were like the thief who was next to Jesus on the cross, maybe a little warning to make their peace would be better. Bottom line, it's come as you are, we go when our time is up.
DeleteI think heart attacks are pretty painful. My mom had one that she survived.
DeleteKatherine, you know that book by Connie Willis - "Passage"? It's about near death experiences and the characters talk about what the best way to die is. One who is a nurse says the best way is by brain aneurysm in your sleep.
Maybe it's my makeup. Even as a little kid, I could take needles without crying. A short intense pain. It's the ongoing, constant stuff that scares me.
DeleteCrystal, one of my grandmas died of a heart attack. It was supposedly "mild", and the doctor was trying to decide what to do next, when all of a sudden she coughed, and that was it, game over. My dad said at the time, " That's all, it's that easy?" Because that was after Mom's death from cancer, and it wasn't easy, even though I called it "good". But I would choose heart attack over stroke, especially a stroke that leaves you paralyzed or impaired. I would want it to just take me out, then and there, if I had a stroke.
DeleteRegarding the prolongation of life, it's often a byproduct of reducing horrible pain. My aunt's hip broke at 95 resulting in horrible pain. To stop the pain, an artificial ball joint was implanted. 50 years ago, a death sentence. Now, at least 3 more years of enfeebled life. Recently, my mother had a clot in her leg. Horrid pain. 10 minute procedure removed the clot. In 1960, the same thing killed my grandfather.
DeleteI think my father had a good death. He died at 87 of lung cancer. It was detected after he fell and hit his chest. It was about five months until he died; I lived with him in his house those months; my mother had died ten years earlier.
DeleteHe had the opportunity to have a operation but decided against it even though I had encourage him to have it. In his last five years he had developed some difficulty walking, and a bad case of psoriasis. The lung operation could have made life more difficult for him.
Dad was not a church goer, but he was a very spiritual person. He was a retired steel worker with a lot of mechanical skills, liked helping others. He worked like it was prayer. Anytime he had a project he thought it over while drinking his coffee, assembled all the materials and always completed it without difficulty. He had a beautiful respect for people. Time and again I will see him walk over to a neighbor whose project was in a mess, gently talk him through it and have the guy end up thinking that he deserved my dad's help.
The night he told me he had decided not take the operation, he revealed that he had prayed to my mom every night since her death 10 years earlier. That was dad's spirituality. The Mass and all the liturgy I and my mother loved was like ice cream and cake; Dad was a meat and potato's man. The fact that mom was a saint and she was in heaven was all he needed.
I have a great love of the desert solitaries. In some ways my father was one of them; they valued their daily lives, their cell, their work and hospitality to others. I think Dad and they would get along well.
He just slowly went down hill, eating less, and moving about less. I prepared a service book of family pictures, hymn etc. for Dad's funeral. We found a beautiful new hospice for the final week of his life. By that time we communicated by holding hands. I had shown the funeral books to my family; they decided to go home for lunch. As I was finishing lunch, the nurse came to me and I knew that Dad had died. After leaving me alone for some minutes I asked the staff if they would join me in prayer and gave them the funeral books.
As the prayer of the faithful I had composed a three part litany of thanksgiving for our family more like the litanies found in Divine Office. My mom and I both shared Dad's skepticism of the clergy so I am sure she appreciated my send off.
Stanley, yes, they did emergency heart valve replacement on my mother at 80. They told her she had no choice. I told them she would not comply with their post op regimes, but they assured me she would be "scared straight" by the experience. She is not compliant with diet, exercise, or meds, and she has done nothing but complain about how awful her life has been for the last four years. It's sad.
DeleteJean, I know. The psychological component makes all the difference in the world. I'm afraid MY mother is not constituted to handle well what may have to happen over the next few months. I remember the most frightening and disconcerting scene in "The Exorcist". It wasn't the head doing a 180 or the vomiting. It was Fr. Karras' mother, having necessarily been moved from her apartment to a nursing home saying to her son, "Dimi, why you put me here. Why you do this to me?" Affected me even though I was 26yo in a family that never showed signs of dementia. That is, until two lived into their 90's. My worst nightmare is coming to pass.
DeleteProbably everyone has seen the clip from Jimmy Kimmel, whose newborn son arrived with a fatal heart defect. Thanks to (prayers and) a brilliant surgeon, the defect was repaired and the threatened child can live a normal life. Jimmy's poignant, tearful, words were broadcast repeatedly, with the comment that one shouldn't have to be rich (as rich as he is) to be able to provide such critical medical care for one's baby - or anyone. Absolutely. Surely the trillions that have been spend on arms might have spared some of our tax money for a cause such as this.
ReplyDeleteJack, I was living with my mom too when she had lung cancer.
ReplyDeleteThey didn't let her have an operation because it had gone too far already when she was diagnosed. My sister researched a lot, trying to find alternative treatments and nutrition to help her. She even took her to nearby San Francisco for acupuncture. My sis took her to chemo too.
She kept losing weight, I could wrap me hand all the way around her upper arm. It was hard for her to walk. She had to use an oxygen talk when she went out and an oxygen machine thingy when she was home and at work. She had to take drugs for the epilepsy the radiation to her brain caused. I was the only one home with her when she had her first seizure and I didn't know what to do. By the time she died she was taking 13 different medications for her heart, blood thinner, thyroid, and other stuff. And she got bed sores because I couldn't get her to drink enough, to roll over in bed enough.
She had gone to the hospital one weekend for a treatment to help her breath better and she died during the night while she was there. She was all alone. My sis and I went there the next day and we just stood at the end of the room clutching each other.
Crystal,
ReplyDeleteMy mother died ten years before my Dad; she was only 72. Like my father she basically was never sick, never took any medications. About three years before she died, she had an episode in which a blood vessel in her esophagus ruptured. A lot of tests followed and the doctors said her lungs and heart were in terrible shape and she had six months to live. They did not attempt any type of treatment. She ended up living three years, very slowly deteriorating, and basically died when she got pneumonia. But even that wasn't bad. We did not expect her to die when he took her to the hospital.
Although her death was relatively painless, Dad and I knew that she really did not want to die, that she had always thought she would outlive my Dad. So it was very difficult for both of us.
I was about 50 at the time; before her death I still felt like a 30 year old; then it seemed that I felt very old. It took me at least a year to recover from the depression. It was good that I liked my job and of course in the mental health system had a lot of support though I didn't go into any formal treatment. When my Dad died I fully expected another year of depression, but nothing happened. I think that had much to do with his acceptance of his own death. I was also able to spend a lot of time with him whereas I was still working when Mom died.
A lot of the medical system seems very arbitrary. My mother didn't get any treatment at all at age 69, yet they proposed a operation for my Dad's lung cancer at 87. I suspect that part of that was he was treated at a center which did research. When we were preparing for his operation, I had requests for all sorts of research to be done as part of the operation. I turned most of them down. I was relieved that Dad decided not to have the operation because I was beginning to suspect he was more of a research subject than a patient.
Yes, one of the reasons I have not gone to the University of Michigan hospital system is because I don't want to be their guinea pig. Those places are great for folks who want to stay alive at any cost. I'm happy with modest interventions, monitoring, and lifestyle changes. But I have made it clear that I do not want to get sucked into emergency treatments.
DeleteI don't want to be a guinea pig, either. A lot of people want to get in "studies", thinking it might give them a better chance. Thing is, you don't even know if you're getting the drug they're testing, you might be part of the control group. You would still get standard care. But I'll pass.
DeleteCrystal, Jack, everyone, your stories move me to the heart. My father died from stomach cancer at the age of forty eight. I was twenty and had just started working as a co-op in what would become my job for 38 years. So strange to realize I outlived my father by a generation. These stories bring context to what is becoming my own situation. Having a 93yo parent who is losing her memory and cognition in strange ways. And she still being the constant caretaker of my 98yo aunt and insisting she is still fine and capable of doing the job. But my aunt is way beyond assisted living. And I have to figure things out quickly.
ReplyDeleteI am so sorry, Stanley. My mother has had lifelong mental problems, so I know you are in a tough spot. I suggest seeing a lawyer to see what your options are and to discuss the pros and cons of getting Social Services involved as needed. After Dad died and my mother deteriorated mentally and physically, I found that being able to talk to knowledgeable people about practical solutions was a huge relief. Mental health counselors can also help with the stress. If you need a sounding board, you have my email. My brother lives a thousand miles away. He helps with wellness calls, but his wife has MS, so I'm on my own with Mom. It takes a toll.
DeleteThanks, Jean. I may take you up on that email offer when I get a chance. I am starting on the legalities starting with my own new will. Checking with the local assisted living place, etc. The hospital did a neurological workup and MRI on my mother while she was in the hospital. Now to see if my aunt's neurologist can take a look at my mother. Aricept helped my aunt. Maybe it can boost my mother. I will try to get help. Thanks again.
ReplyDeleteWe're doing a new will soon, too. We don't want to saddle our kids with handling a mess in our later years. Several years ago we took out long term care insurance, one of those things you hope you don't need.
DeleteI do think it's good to be able to size up all the options and get expert advice. My sister and I were overwhelmed and just tried to get through each day - we didn't have any kind of plan. Thinking good thoughts for you, Stanley and Jean.
ReplyDeletePS - don't know if this will help, from the NYT ... Deciding on Care for Elderly Parents in Declining Health
ReplyDeleteCrystal, thanks! Senior Services does periodic assessments with my mother. But there are some good things to think about in there.
DeleteMy sister's father-in-law moved to an assisted living place with different levels of care after he broke his shoulder. He had the least care. Later when he became much more ill, he was able to jeep his same apartment but got round the clock care. It was really expensive, though ... https://youtu.be/iZahAaRocro
DeleteThere was a good death/bad death scenario yesterday evening. My daughter in law's grandfather died. He had been doing chemo for colon cancer and was tolerating it okay. But he developed a blood clot and was hospitalized. My son and daughter in law and the children visited him, said that he seemed in good spirits and not in pain. They said they had a nice visit. Barely an hour after they left, they got a call that he had died. The blood clot had traveled to his lungs, it happened very quickly. Their visit may have been the last conversation he had. I'm thinking there are worse ways to go, especially if you were 83 with colon cancer and hadn't finished chemo yet. He had been a mathematics professor prior to retiring; my husband had him for several classes in his college days.
ReplyDeleteThe issue of allocation of resources comes up much earlier than end of life. About five years ago I suddenly developed a balance problem. Then a lot of other problems started developing. After a lot of MRIs, EEGs, etc. I took all the problems to the Cleveland Clinic which touts its world class care.
ReplyDeleteUnfortunately the symptoms did not immediately point to a common problem so I was sent to a lot of doctors. The lower spine guy said though things looked bad, since I wasn't in any pain, I didn't need him. The neck spine guy said he could give me an operation. My own neurologist assured me I was in much too good condition to consider any operation.
I then saw a vestibular specialist even though my ENT doctor said there was no problem there. But this guy was really world class. I think I was fortunate it was a snowy January day; he spent a lot of time with me because he had no one else. He has trained a bunch of physical therapists.
The physical therapist I got was surely world class. He told me what to do for my neck pain; and as long as I do that, I am fine. I told him I wanted to resume the elevated treadmill; again a few exercises and that was fine. I told him if I went too fast on the treadmill I developed sciatic pain. Again some more exercises and that is well under control. Unfortunately this was spread over three years since my Advantage Plan would only allow 6 session a year.
Once I could resume most of the aerobic exercise I had been doing things began to clear up. I lost the 15 pounds I had gained. I had been diagnosed with sleep apnea. I was retested because of the weight loss. No sleep apnea. However since I am a scientist, I observed that the first test was done on a flat bed and the second on a reclining hospital bed. I bought an adjustable bed. Sure enough when I sleep flat much snoring; elevated no snoring. Far easier than a CPAP machine. They should require all tests on adjustable beds to rule out that solution.
I could have not only accepted my doctor's recommendation to use a walking stick (it does help by providing my brain with extra information) and considered all the other problems as a part of old age. I think a lot of the doctors at the Cleveland Clinic thought that way and just gave me some answer to go away. By being a scientist I saw the whole thing through and acquired a lot of information about myself and skills to make by coming years more livable. I also spent a lot of time, tax payer money, and dodged a lot of treatment I did not really need.
Seems we need a better system for the elderly more like the mental health system. Lots of physical therapists, social workers, nurses, far fewer specialist, a lot of family support groups to manage the family problems and a lot of patient support groups to share solutions.
Without scanning to see if anyone else has mentioned this article from today's Times:
ReplyDeletehttps://www.nytimes.com/2017/05/18/opinion/obamacare-repeal-medicaid.html?ref=opinion&_r=0
The Best Replacement for Obamacare Is Medicaid
Jim the missing McCrea