Grounded in research at the Dartmouth Medical School, slow medicine encourages physicians to put on the brakes when considering care that may have high risks and limited rewards for the elderly, and it educates patients and families how to push back against emergency room trips and hospitalizations designed for those with treatable illnesses, not the inevitable erosion of advanced age.
Slow medicine, which shares with hospice care the goal of comfort rather than cure, is increasingly available in nursing homes, but for those living at home or in assisted living, a medical scare usually prompts a call to 911, with little opportunity to choose otherwise.
At the end of her husband’s life, Ms. [Edie] Gieg was spared these extreme options because she lives in Kendal at Hanover, a retirement community affiliated with Dartmouth Medical School that has become a laboratory for the slow medicine movement. At Kendal, it is possible ”” even routine ”” for residents to say “No” to hospitalization, tests, surgery, medication or nutrition.
Charley Gieg, 86 at the time, was suffering from a heart problem, an intestinal disorder and the early stages of Alzheimer’s disease when doctors suspected he also had throat cancer.
A specialist outlined what he was facing: biopsies, anesthesia, surgery, radiation or chemotherapy. Ms. Gieg doubted he had the resilience to bounce back. She worried, instead, that such treatments would accelerate his downward trajectory, ushering in a prolonged period of decline and dependence. This is what the Giegs said they feared even more than dying, what some call “death by intensive care.”
I fully believe that the method discussed above is ethical and moral. It is something which should be preached from time to time. The Church can have a most remarkable ministry at this time in life. I say there are times for less medicine, more communion, the later being the best medicine after all.
This is something that some clergy really need to come to understand. I have worked in hospitals where a family has come to grips with reality of death only to have clergy come in and say something about praying and God giving a miracle.
In my own family I have had two miracles while praying the offices for the dying. I was at a charismatic parish meeting when I received word that my father was unlikely to live. (It would the next day before I could get on a plane to visit.) I asked a few others to pray with me the office of the dying. After they prayed with me, they prayed over me prayers for me and my father, he lived a good life for another eleven years.
I have often been asked to pray with families who have a member about ready to die. (The volunteer chaplains’ office was directly across form the ICU waiting room, and I was “in collarâ€) When I pray with a family I tell it is OK to ask God for a miracle, but they also needed to pray for the strength to accept that which is likely to come.
The above story is different in that people there have time to think things out. The local parish and it staff/volunteers need to ready and willing to have these discussions. Even for those with strong faith such decisions are not easy.
I agree that the above is moral. It is the good face of “evidence based medicine” (See the thread on Medicare being a generational divide below).
Right now our ICU (about 30 beds is filled with folks almost all of whom are over the age of 70. Few will live more than 5 years. Bring “slow medicine” in, and the ICU will empty, and costs will plummet. None of these folks would be alive in Great Britain or Belgium.
The problem of course is the slippery slope. If it is reasonable for an 80 year old demented man in frail health to be spared the full diagnostic workup and treatment for cancer why not an 80 year old healthy person? Or a 70 year old who was otherwise healthy? Or for that matter a 60 year old who has diabetes and hypertension and stable cardiac disease in good control?
It is these considerations that have resulted in the lower costs of countries that have national health services. For example, in the UK if you are over 50 you don’t get dialysis. As you might imagine, this greatly lowers costs.
Evidence based Medicine. The “humane” face of the future. Or something else.
Shari
The 92-year-old mother of a friend of mine broke her hip two months ago. She had a hip replacement the next day, was up the day after that, and now walks without a cane or walker. Two decades ago, an aunt of mine in her 60s, having a recurrence of invasive breast cancer following initial treatment, declined further chemo rounds and died without major pain with hospice care. It just depends. What we need, as Christians, is to accept that we are going to die and then live forever in Christ, and make reasonable medical decisions based upon our circumstances. I’m uneasy about giving government committees the power to make decisions based on statistics.
I never understood when my mom’s doctors would treat her as aggresively at 80 as they would a person of 50 or even 30. I just wanted her to be able to get through each day in comfort and alert to her environment. I have to admit when during her last hospital stay a doctor finally admitted that surgery on her TIPs would be too invasive (sp) with a very low likelyhood of an optimal outcome, I was relieved. My mom was switched to pallative care and was transferred to hospice. She died in peace 3 days later.
I used to get especially aggravated by dietary restrictions placed because she was diabetic. I never advocated her eating junk but sometimes the poor women could barely eat at all. She would tell me every once in awhile ” I would love some mash potatoes but they’re not on my diet”. I would tell her ” Your 83 years old if you want to eat a bowl of mash potatoes eat them. If you eat them how many years will it take from your life and at this point do you care? At 83 keeping an extremely tight strict control over her diet might have gained her 2 or 3 years ( she had a multiple of other ills) not something she viewed as a good thing. But at 53 years a diabetic crossing all the ts of their diet gains decades. So it would be very worthwhile to forego the potatoes.
Medicine is not meant to be one size fits all.
“I never understood when my mom’s doctors would treat her as aggresively at 80 as they would a person of 50 or even 30. ”
Because not only would it open them up for a medical malpractice suit if they did not, but it might even open them up to criminal charges for manslaughter. It might even carry “hate crimes” penalties, as it would be “discrimination” on the basis of age.
It is precisely because of the liability (both civil and criminal) that medicine entails that physicians not only perform “unnecessary procedures” but also will welcome “evidence based medicine”. Docs who follow the guidelines will not be sued. Those who fail to do so (who fix the 90 year old’s hip) will be accused of “fraud and abuse” and will incur both civil and criminal penalties.
So evidence based medicine will come in. It will protect physicians from patients, and reduce costs. Some (the young and healthy and those who are at peace with dying) will welcome it. The government, the insurers, and most physicians will also welcome it. (One is paid the same whether one is taking care of a healthy man with a migraine or a fragile man with dementia, partial paralysis, parkinson’s who is having increasing mini strokes. The latter takes up huge amounts of time, and pays poorly, the former takes little time and is well reimbursed). Relegate the time consuming patient to “palliative care” and physician revenues increase.
Just as we have forgotten what a good city public school used to look like, we will forget what good medicine looks like.
Clueless her doctor’s knew she did not want to be aggresively treated. She and I told them that our goal was not for her to live x number of years but on a day to day basis. They chose to ignore that wish.
If not for that one doctor agreeing to not perform surgery she most likely would still be here living in misery and longing to go home. Instead because one man saw the wisdom of enough is enough she died very peacefully while we were reminiscing (sp) about family history. We were laughing with her Pastor when he glanced over and noticed she had gone from sleep to death with an ease I pray will be mine when the times comes.
If you don’t wish to be aggressively treated, then you need to do what I have done. I have a living will which states that I do not wish to be aggressively treated if I am every placed in a position where I am likely to be dependent on others for care. My sister has a durable power of attorney for health care which gives her authority to pull out feeding tubes, refuse surgeries, laugh at diets etc.
Without this provision, the physician is at the mercy of a family who later changes their mind. The patient would prefer to simply eat whatever, and drift into a diabetic coma but is no longer competant to say so. One daughter says “that’s what Mom would want” After the mother drifts into a diabetic coma and goes to the ER the family panics and it is “WHY DID THE INTERNIST NOT DO ANYTHING? HE KNEW MOM WAS ILL!”
As long as there is litigation regarding an event (death) that is inevitable eventually, there will be this problem. The only way to solve it is to either have strict guidelines (Evidence based medicine) or to have release from liability allowing common sense and compassion to have free reign instead. The latter, however requires trust between physicians and patients. Right now patients don’t trust physicians and physicians don’t trust patients.
Instead of praying that your death is easy, just go to a lawyer and make up a durable power of attorney. That will be much more effective in the current climate.
I can’t tell you how many elderly patients I have attended in the ER with a stroke, whose angry and litiginous families tell me “Her doctor knew she was diabetic and HE DIDN”T EVEN PUT HER ON A DIET!”
If you can’t have trust, then you can’t have common sense.
If you can’t have trust then you need guidelines and documentation. Those can be voluntary – I have documented my wishes in formal language in my living will, and I have provided a living guardian to provide guidelines to back up that documentation.
Or they can be involuntary – Evidence Based Guidelines that make clear that 90 year olds with hip fractures don’t get surgery or any procedure that will require intubation or anesthesia. Or 80 year olds. Or 70 year olds. Or 60 year olds who are no longer working.
Evidence based guidelines will not only “fix” the malpractice problem for physicians, but will fix social security and medicare, not to mention disability insurance. It will go a long way to reducing the national debt.
Trust and personal responsibility (health savings accounts and catastrophic care) would do the same thing as documentation and guidelines. However these would require civic virtues that our nation no longer possesses.
Go one step further: get your durable power of attorney and your living will – then take copies of them to the person/people you have named as your representatives and have a frank and honest discussion about your end of life wishes. Then have that same conversation with others in the family who may object to your choices. Should some family member later sue to keep you in a persistant vegitative state for years on end over the wishes of your pesonal representative, nothing sways a probate judge like the recounting of a specific conversation about your actual wishes. This is almost always in contrast to testimony about “I just know what she would have wanted.”
These are emotional and scary issues and the slippery slope is always out there. The time to discuss these matter is when everyone is relatively healthy, NOT when mom in is a crisis health situation and nobody quite knows what to do and nobody wants to be the one having to make the decision. With medicine creating more ways to keep people technically alive for longer, we really need to be discussing this issue more often, both as a society and among families.
My mom had a living will and I was her medical surrogate as well as having durable power of attorney. But these do not come into play until there is an end of life crisis or decision to be made.
#11: I don’t understand that. If your mother was incompetant the durable power of attorney automatically comes into play.
If your mother was competant, then she had the ability to refuse care, or to agree to care. If she were competant and wanted to have aggressive care of her diabetes or other ailments then neither the physician nor the family can do much about that. If she didn’t like her diet, she could always have said, “you know, I hate this stupid diet. I’m not going to follow it, and I don’t care if I do die a year or two early, so there.” If you felt that her physician was being too aggressive, then you could advise your mother “Hey Mom, you’re 83, it’s time to live a little, go ahead and eat the ice cream.” You could have gone with your mother to the doc and said “Hey Doc, my mom’s 83. She likes to eat! Will it make a difference if her suger is high or not? (Er…actually yes…depending on whether another year or two of life is important to you…Older folks have a different take on that subject than younger folks).
I disagree with my own mother’s choices for health care (as much as can be extracted from the system, and the best available). My father on the other hand was a minimizer, and I disagreed with his choices also. However while they were competant I have no role in their decisions, and if my mother were incompetant, I would follow her wishes, even if I disagreed with them.
What I hear you saying is that your mother was competent, but you believe that the physician should have treated her less aggressively than a younger patient. This is the sort of thing that physicans routinely did in the past, and were denounced for as “paternalistic”. (It is also a certain route to a lawsuit if not criminal charges).
“I just wanted her to be able to get through each day in comfort and alert to her environment. I have to admit when during her last hospital stay a doctor finally admitted that surgery on her TIPs would be too invasive (sp) with a very low likelyhood of an optimal outcome, I was relieved. ”
It sounds as though what you wanted was to take your mother to hospice. If you take your mother to an acute care hospital, it is presumed that what you wish is acute care. That is what acute care hospitals are for.
I have never understood people who bring their elderly relatives to the ER and then get mad when we treat them. If you want to be “Do not rescuscitate, comfort care only” then say so in writing, before the crisis occurs. Otherwise, the presumption is that folks want to live.
Clueless, If you are familiar with Hepatic Encepalopathy you know the challenges we faced as her mental status fluctuated sometimes daily.
And I should have made it clear my mom was taken to ER because she had fallen at home, she was transferred to Hospice and that is where she died. And try not to sound so condescending it does not become you.
I’m sorry. I am familiar with hepatic encephalopathy. I have two frustrating patients who come into the emergency room every 2 weeks with it. One has done this twice a month for over a year, and the other has done it for at least six months. When they do, we do whatever is necessary to pull them round again. That is our job. That is what their families expect of us or at least what they say they expect of us. When they are alert they feel good and wish to continue living at home (where they refuse to stick to their diets which eventually tip them over again). They don’t wish to go to hospice or to assisted living, and they have no desire to be DNR. Indeed, both hope to have liver transplants (though neither is eligible, and they know this). It never occured to me that their families thought we should be less than aggressive in getting them tuned up whenever they show up in the ER. But even if their families did think we should be less than aggressive, it is not what the families want that is our priority. It is the patients’ expectations that we are obliged to try to meet. If they don’t wish to be DNR then legally and morally (in the absence of mandated Guidelines) we are forced to “do everything”. If your mother, in between attacks did not want to be DNR, I don’t know what you expected her physicians to do. If they failed to aggressively treat her in the absence of a DNR order they would have likely have been found guilty of malpractice.
I know Dr’s are often stuck in a damned if you do and damned if you don’t position.
I just think that Doctors and patients should realize that treatment which may be best for a 25 or even a 59 year old may not be best for an elderly person with multiple medical problems.
Of course we realize that treatment that might be best for a 25 year old may not be best for an 85 year old. However it is not our place to suggest that an 85 year old’s life is not worth living. I do discuss end of life issues with my patients who are likely to wind up on a ventilator in the near future. However, if a patient wishes to continue as he/she is, then we respect his/her wishes.
It is not our place to suggest that repeated hospitalizations are not cost effective and that the patient would be better off dead. Those are considerations that limit care in European hospitals, and will likely come in soon under mandated guidelines. However if we were to do this in the absence of either a DNR request or mandated guidelines, then not only would we be found guilty of malpractice, but if the patient came in and we deliberately failed to stabilize him/her simply because he/she was a “frequent flyer” we might well be liable to criminal manslaughter charges.
Clueless, maybe the answer then is for patients and doctors to have care guideline options that express just how much “care” a patient wants even before faced with the need to post a DNR. An example I guess would be at what point does a patient wish to forego even relatively minor surgery . It also means doctors and patients being brutally honest with each other. With patients being open about their diet, OTC medications and habits which will have an impact on their care. And with doctors being realistic and knowing it is probably easier in some cases to make adjustments to care then to get some patients to change their lives. At some point the practice of defensive medicine has got to stop.
A lot of what we went through could have been avoided if more doctors in this area had understood how Hepatic Encepolapathy and the change in ammonia levels effect a patient, especially their memory and energy. I kid you not I did have to explain this several times to one of her doctors, who thought my mom was abusing the system by going to ER when she had symptoms of elevated levels. Actually explain is too mild a word for how I made myself clear to this doctor. And she had a DNR notice posted on her fridge as well as in her doctors’ chart.
As for malpractice being a concern in her case, it was not once I made it very, very clear that I knew exactly what could happen if the doctor administered morphine for her pain. The word death was brought up more than once.
I appreciate it is not your place to suggest a patient would not be better off dead, but I do think it is your place to discuss very honestly with patients just what the treatment can and can not do for the patient in terms of life span, alleviation of symptoms, and effects on the patient’s day to day life. Some patients may decide a extra 10 years is worth incident tremors from a medication others may not.
And like it or not the reality is that every day patients already make decisions based on cost effectiveness. I have stopped my Avonex because with only Medicare I can not afford it under either part B or D. I also had horrid side effects , but that was not the major factor in my decision. I did this with the knowledge of my Neurologist. Oh the other treatment option Tysarbi is a mere $3000.00 a go but hey medicare covers part of that. Guess who will not be getting settled in for a 30 minute IV infusion of the same?
The only way that defensive medicine will stop is to stop attacking physicians. If mechanics were sued or jailed every time your 83 year old car broke down auto repair would be astronomical and your mechanic would be insisting on tune ups and replacements on a monthly basis. In point of fact somebody with hepatic encephalopathy is not going to live indefinately. If that somebody has pain, and is DNR every pain medication is going to make the encephalopathy worse. There is no point in complaining that the physicians were too aggressive in treating her encephalopathy and that you just wanted her to be comfortable on a day to day basis, and then complaining that the docs wanted to control the pain with a medication (like morphine) that will make hepatic encephalopathy worse. You can’t have it both ways. You can either have strict control of the encephalopathy or else you can have the pain.
As to having “care guidelines” that is what the “evidence based guidelines” will look like. Basically somebody who comes to the ER in hepatic coma more than a couple of times a year probably will be made “comfort care only” with instructions to use narcotics regardless of its effect on the encephalopathy.
But it is also not possible for a physician to discuss every contingency with a patient in advance. That is why I have discussed my wishes with my family and appointed a guardian who will refuse procedures, stints, g-tubes, foley catheters, nutrition and everything else. That is the purpose of having a legal guardian. (Otherwise why have one. The DNR would suffice).
And of course cost factors into the equation. I have no desire to bancrupt my family with my medical care. If I get cancer, I will plan on dying if it is unlikely to be easily eradicated. My family’s economic position would improve, and it’s not as though I’ll live forever anyway. I’m not afraid to die.
But my family can’t make that decision for me. Nor can my physician. It needs to be a voluntary decision that I make out of love for my family. Alternately, the state can decree a decision that I lack the courage to make for myself. That is where the guidelines come in.
It sounds as though you would like to have evidence based guidelines. Actually I think it will make a lot of families happy and will certainly control costs and end defensive medicine.
“There is no point in complaining that the physicians were too aggressive in treating her encephalopathy and that you just wanted her to be comfortable on a day to day basis, and then complaining that the docs wanted to control the pain with a medication (like morphine) that will make hepatic encephalopathy worse. You can’t have it both ways. You can either have strict control of the encephalopathy or else you can have the pain. ”
I think you misunderstood. I had no problem or objection with my mom receiving morphine, I wanted that and consented to it knowing the risks and making that knowledge clear to the doctor. Also it may not have been clear that this was during her last hospitalization when we had already “activated” her living will and my POA & medical surrogacy. She was awaiting for a Hospice bed to become available. So it was part of her pallitive end of life care.
And I agree the decisions have to be voluntary, no argument at all from me on that point.