Let me understand. Is this author advocating that a patient that needs dialysis could choose to pursue "conservative treatment" that will fix their renal problems in place of dialysis? I think this is a very uninformed and dangerous article.
1. I will tell you that as an ER doctor, if it is determined that you need dialysis in the Emergency department, no amount of conservative therapy will keep you alive in the next few hours with that severe hyperkalemia, metabolic acidosis, uremia, fluid overload and hyperammonemia that you presented with.
2. If you could really fix your renal issues with "conservative therapy", why have you not been doing that all along?
3. Why not start said "conservative therapy" with dialysis to reduce or shorten your need for dialysis if it was so effective.
4. If we are all money grabbing parasites, then leave and pursue said conservative therapy. No one forces another to sit for hours in a dialysis clinic.
12
@Charles Oh no, it's not that. The way this works is covered in that part of medical training, where one studies "hysteria." Consider the obvious: The story makes no cogent statistical argument that the outcomes are better, or even that survival would be close to the same. It's probably not a coincidence. It's probably like "watchful waiting," for you to die.
I grew up in Seattle Washington, where at the time the dialysis technology was being first put into use. There was a committee that made life or death decisions, about who would get the treatment. It was an onerous ethical business, full of judgments about the value, potential, and good to society that would result from treating one patient, versus another. There was not enough capacity to meet the demand, then.
Now, we take the psychiatric route. "Surely those vaccines are just a plot. My kids will be just as well off without them. Dialysis probably is a hoax, too." No amount of anecdotal expose' about my father's uncle who spent over 20 years on a ventilator able, below his neck, to move his right pinkie finger only. Surely the result of an imaginary case of polio myelitis.
Let's face it. Labor is in surplus all over the world. We are unnecessary. The system doesn't want to spend money on us. Like any oppressive regime, it's easier to engineer an epidemic of self delusion in the oppressed, rather than simply cutting the peasants off.
I’m a practicing nephrologist for nearly 15 years. The general topic is a welcome one as we need elderly patients, and moreso their families, to give more thought to long-term dialysis especially when quality of life is already low. None of the nephrologists I work with would ever recommend dialysis for a non-verbal patient with advanced dementia living at a facility. However, families sometimes want “everything done”, and we comply because that is the culture in this country.
Misleading in this article, however, is this concept of “conservative management”. As described, it entails dietary counseling to reduce uremic toxins, hyperkalemia, and fluid overload, and medications to control acidemia and to aid with anemia, among other things. Uh, we already do that for all of our CKD patients. Furthermore, about 10 years ago our specialty began recommending that we not routinely initiate dialysis based solely on the eGFR, which was previous practice, but rather based on the development of significant uremic symptoms or difficulty in controlling fluid overload, hyperkalemia, or acidemia with diet and medication. So any good and up-to-date nephrologist is already practicing “conservative management”.
45
Thank you for this article and I hope more people will read it. I am a dialysis nurse and I see a lot to be concerned about. No doubt that the dialysis population is for the most part the poor and underserved- and rarely have consistent access to medical care outside of dialysis. There is terrible decision making happening on all sides. From doctors who do not consider quality of life, to the insurance industry who pumps in money to dialysis but not into preventative care, to nurses who are trained to react to numbers and not to humans, and finally to patients who do not consider themselves responsible for their own health. Dialysis obviously has its place and it is a lifeline for some. For others it is a prison sentence of which they did not know they had been sentenced.
General practitioners need to get into the game quicker and with more authority. A patient with failing kidneys needs to hear about all the options before being turned over to the nephrologist and the slippery slope that follows.
As an oncology nurse we used to speak about doctors "giving chemo in the grave." This is of the same piece. Treating a disease instead of the person.
Lets keep this conversation going. Speak about it with your family and loved ones and your general practitioner.
Dialysis is an absolute life saver and an amazing example of how medicare can cover the needs of many for little.
But it is NOT the only answer to kidney failure- especially with older patients.
40
The decision to go on dialysis is complicated. My father began when he was elderly and frail, but quite cogent. I’d like to comment that he seemed to tolerate the challenges of dialysis while receiving it through a chest port better than he did after the access surgery and vein maintenance. I wonder if the impact of the access process on the frail elderly is sufficiently understood by both patients and those in the field. For my dad, vein access caused multiple types of discomfort and painfully restricted his movement in the dialysis chair. This was very hard for him since he was quite thin. It also wasn’t as low key a surgical procedure as we’d understood from both the social worker and the highly touted NYC doctor who performed it. It turned out to require multiple follow up visits, monitoring and painful maintenance to keep the vein available. We were not advised till after the procedure that daily aspirin was necessary to thin blood for the access point. I sensed this would be trouble. Within a short period he developed internal bleeding. Then he died. We’d been told that Medicare mandates vein access for most patients. I believe that the elderly should be allowed to choose how they elect to receive dialysis. A chest port requires scrupulous cleanliness and carries a small risk of fatal infection. Still, with clearer information, it might be deemed less punishing and a reasonable risk for some patients.
8
Thank you to the New York Times for this article and for the many comments and experiences that the readers have shared.
At age 92, my mother was given X-ray dye, which caused an acute kidney injury that she never recovered from. “Conservative” treatment was tried for more than 90 days in various hospital settings until it was obvious that dialysis was her only option to stay alive. She was of sound mind when she made her decision to receive dialysis. For more than two years, she endured all the horrors that other commenters described and more. On the good days she lived and enjoyed life to the fullest. Dialysis exacerbated her other health challenges, especially harming her aortic heart valve. She remained fully mentally intact and did not have an “easy” death at age 95.
There is prejudice and blame surrounding dialysis patients. Kidney failure is viewed as condition that is caused by lifestyle choices. There needs to be more awareness of the hazard that X-ray dye presents to elderly people. There are other things that bring people to dialysis through no fault of their own. When a person receives dialysis, they are at the mercy of the technicians and the quality of the treatment facility. It did not take long for us to figure out that some of the technicians were better than others. It is so much for a family to understand and navigate.
10
Going on my 11th year of hemodiaolysis, in center which changed ownership from a non-profit hospital to a nationwide non profit operator.
I have other health issues, A-fib, heart vessel blockage 20 years ago, total renal failure and deteriorated hip joint.
First, let me say that dialysis is NOT fool-proof. It is a keep-alive therapy. I spend roughly 18 hours per week at dialysis, readying to and drive home.
That leaves me 150 hours per week to live my life!
I was on meds and conservative care for nearly 4 years before total renal dysfunction, but I had 1 kidney only ever since 1966!
There are inherent dangers in dialysis, just as driving a car or riding in a Medi-van!
The article is way too shallow and simplistic in structure and content.
Whether healthy or in hemodialysis a healthy diet is key to staying dialysis free as long as possible.
I lost my left kidney in 1966 following a partial building collapse crushing injury! There should have been kidney and heart health clinics and services back then - THERE WERE NONE!! That is the unusual way ...it is likely 80% or more of dialysis patients get there due to disease and diabetes!
Protein nutrition is important:
Quoted from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3313743/
NUTRITIONAL REQUIREMENTS IN CHRONIC KIDNEY DISEASE
9
I am pleased to read this. People seem to always be looking for the most aggressive way to treat an illness, when there are reasonable alternatives, I don't think the date of your death should be remembered as much as how you lived your life.
7
this article scares me as a 28 year old veteran with iga nephropathy :/
2
I was taught this by an experienced doc over a patient with metastatic cancer I was eager to put nephostomy tubes in (to relieve kidney blockage) as a young Doc. "Uremia is one of the better ways to die" he told me. Now I always ask the patient again if they really want the procedure.
10
Seems obvious from this article that the dialysis "alternative" is fairly rapid death. That may be preferential for some, but this article misled by hinting that there may be a medical alternative to dialysis for managing kidney disease.
Instead, it boils down to: Is it worth it it to live longer and spend half your life hooked up to machines? For my grandfather (in his 90s; otherwise active and healthy) and many others, the answer is yes.
10
@Jaclyn his choice. But not that of many others. Patients should be informed of their choices.
8
I have practiced nephrology for 40 years, caring for several thousand patients on both hemodialysis and peritoneal dialysis. This article is timely and useful, though it is excessively optimistic regarding the benefit of dietary changes to slow the progression of kidney disease.
Dialysis is a very tough way to live, for every patient. For the elderly patient with a burden of chronic illness or moderate-severe debilitation, dialysis is often a very bad choice, predictably leading to repeated hospitalizations and dialysis access surgeries, all accompanied by steady functional decline. Only rarely have I seen a nursing home resident derive, on balance, any benefit from dialysis.
Most elderly, sedentary people with an eGFR 10-5 range will continue to feel well, albeit with less energy, less appetite, and likely some swelling. Short of dialysis, there is no effective way to ameliorate the symptoms of advanced renal failure (CKD 5). With an eGFR below 5, most people have more “bad” days than “fair” days. With very few exceptions, an inexorable physical decline will lead to a gentle death in weeks or months.
Unrealistic and uninformed family expectations lead to many unfortunate decisions being imposed on frail, frightened relatives. “Come on, Mom, you should at least give dialysis a try....” is almost always bad advice. Listen hard to patients’ wishes and be brutally honest about their likely life with dialysis. Don’t shy from discussing hospice care.
48
“Home dialysis”, unless you have a very large home, will effectively turn your home into a dialysis center with issues of delivery, storage, sterilization, disposal, and equipment (including inconvenient malfunctions). It is a time-consuming and often stressful commitment.
8
@Kirk Cornwell But if you live in a rural area without a convenient dialysis center it can be a lifesaver, and provides the advantage of letting the patient feel at least somewhat in control of the process.
4
My wife, Jane, started dialysis at 73 and died 12+ years later at 85, with few symptoms of End Stage Kidney Disease during her years of treatment. The secret - recognized since the late '60's, but practiced by only 1% of American patients - is long, slow, frequent hemodialysis - practical only at home. Jane dialyzed 8 hours/night 6 nights/week while we slept. The barrier is two Federal policies - first, reimbursing providers by payment per treatment - which incentives short, aggressive treatment - rather than payment per treatment-hour which would incentivize providers to promote treatment like Jane's at home and full utilization of available in-center hours for those that could not do it at home (about 20%, the '60s experience suggests). Second, the complicated Federal "Coordination of Benefits policy" that guarantees that dialysis providers will lose money starting at month 33 of treatment, eliminating any incentive for them to invest in prolonging in-center patient life after that point (perhaps it is only a coincidence that mean survival of U.S. ESRD patients is about 42 months). None of this is rocket science and is well documented. Any patient ... or partner... who has the physical, mental and emotional capacity to safely drive a car and a suitable abode can do hemodialysis at home.
24
Dialysis is indeed life saving for many. But the question remains as to where health care dollars are spent. I have seen 80 year olds with dementia, transferred to the dialysis center by ambulance 3 days a week; and then transferred back to the nursing home by ambulance, to be fed and cleaned until their next treatment. And no one can make the decision to stop this. Don’t blame doctors. Blame the system and the American public who expect and demand every available option.
37
My mother who is now 99.5 was told at age 85, when diagnosed with stage 4 chronic kidney disease, that she qualified for dialysis. She refused it. Her nephrologist at a Boston hospital said, 'I believe we can get you to 90 with medication management'. With her blood pressure controlled and monthly arensp injections for lifelong anemia, her extended survival is a medical mystery, but I believe is also proof that some older patients who qualify for dialysis can safely refuse it. She is enjoying her life.
52
Absolutely on the money @Claire. The poor like my father and those who are over the age of 80 do not receive preventative medicine care. They are "done" according to one doctor and he continued "after all he hasn't got much longer to go". Go where, I guess he meant death. This attitude towards the elderly places the most vulnerable at risk of reducing their quality of life to zero. There is no money in preventative care but worst for those under medicare, who cares they are on their way out, right? Thank you for illustrating the bias medical insurance companies, pharmaceutical companies and private companies who control the decision on who receives care or not.
5
@amrcitizen16
Then please support single-payer health care by asking your congressional candidates that they support it, or else you will not vote for them.
6
American medicine, high tech, high price. Much of the public expects it.
10 ways to preserve kidney function can be found on the internet.
Remember you cannot be given any treatment without your permission.
7
Interesting to look at the Canadian rate of dialysis use. I suspect this has something to do with the enormous amounts of money physicians in the us can make by owning dialysis facilities and related sources of income. American medicine in rife with such stories.
17
@simon
More likely it has to do with the fact that we wont pay to provide primary care. Sure, there are greedy, horrible physicians out there, but they are in the minority. But in a system that puts physicians $190,000 in debt for medical school alone and then does not value primary care, we have a terrible shortage of PCP's. They are not paid for the time it takes to keep people off of dialysis, and then you don't want to pay the highly trained nephrologists who are cleaning up the mess this stupid system has created. The Canadian system is better not because their physicians are more ethical, but because they support primary and preventative care.
6
My mother was 87 when she was diagnosed with ERD. She had been in such excellent health that her primary care physician did not test for kidney function until it was too late. Her doctor wanted to put her on Oregon’s transplant list, but she refused because she thought that was unfair to younger people who needed transplants. It was a neighbor, a retired nephrology nurse, who told her about a diet that ultimately staved off dialysis for another year, not her nephrologist. Dialysis became a prison for this once active woman - she had loved traveling and exploring the world around her. After 4 years she stopped dialysis and died about 2 weeks later. Were we given an ERD diagnosis, not one of her four surviving children would choose dialysis.
12
I started dialysis at 25 after lupus related kidney failure. I ended at 30 after a kidney transplant. 12 yers later, I still can’t forget the routine placement of people in their 80s and 90s on first-time hemodialysis. Some died from bleeding when their scabs didn’t heal correctly (using 15 and 16 gauge needles on 90 year old skin is baffling), others had dementia and had to be tricked into thinking they were going to the dentist every Monday, Wednesday and Friday; yet others lived many more years and provided wealth of fun and companionship to us all. One of the 90 year old crew at my first dialysis used to sing to us—Oh Danny Boy. Every case is different, but dialysis shouldn’t be obligatory for anyone.
21
The many comments add tremendously to the article which was overly simplistic. I worked in a variety of renal disease settings for almost 40 years. I informed hundreds of individuals/families regarding “all” treatment options. Even with thorough and unbiased information, few chose conservative management. Many opt into dialysis: “lets see how it goes” approach. Myriad patients did very well on dialysis, even though to the care team they looked like a poor dialysis candidate. Thousands are awaiting transplant NOW. Many are not appropriate transplant candidates. I later worked closely with DaVita and Fresenius for years. While not perfect, both strive to provide excellent care. They also promote transplant and all dialysis options. Individuals withdraw from dialysis daily. Without replacement therapy ESRD is fatal. They can be supported as they reach the end of life. Remember dialysis isn’t about money ... it does a reasonable job of replacing “some” of the many kidney functions. My advice: sign up to donate your organs and donate money to kidney disease research (NKF etc).
6
Great article and one every American should read. In his book "Last Rights" (not a typo!), Stephen Kiernan coined the term "gradual dying," since "...the manner in which Americans die has changed. It used to be sudden and now it is gradual...Medical bills are the leading cause of bankruptcy in America." Our physicians are trained to prolong life for as long as possible, never mind the QUALITY of life. They ignore DNRs ("do not resuscitate") and Advance Directives. QUESTION AUTHORITY should be on every patient's mind when consulting with any type of doctor in this country. Our doctors are under intense pressure to conform to established treatments and procedures, but if enough patients begin to question their validity, maybe things will change. Maybe.
13
Once the medical community gets you in 2019, you are in their loop, and become a cash cow! Hippocratic oath?! Baloney!!!
7
My father died last June at age 92 after eight months on dialysis. It was a grueling routine but he knew it was the only way he would continue to live. And live he did for those eight months, writing a book of short stories, traveling to Florida, celebrating his 70th wedding anniversary with my mom. When I think back to the decision to start dialysis I remember running down the hospital corridor alongside a physician who kept saying, "Are you sure you want your father on dialysis? Are you sure, are you sure?" Yes I was sure because without it he would have certainly died within weeks. Dialysis up close is indeed a terrible procedure but my father willed himself to treat it as a part-time job, sitting up while hooked up to the machines, reading the NYT, WSJ and Barrons, writing his short stories painstakingly by hand on lined paper, becoming friends with the technicians who took such good care of him, ever hopeful himself that he would gain strength and persevere. Let's not mince words: Choosing conservative management of end-stage renal disease in the elderly is a decision to die. If you want to live, you have to have dialysis and for those who choose this route it can buy precious time in all its misery. Forgive my cynicism for imploring those in this debate to not pretend that the euphemism of conservative management doesn't have some Medicare cost-saving incentives. Let's not go down a dark path: Dialysis should continue to be a choice, not a mandate.
22
The dialysis industry is a big scam that costs taxpayers billions of dollars while trapping patients in a prison of endless trips to the clinic. There are often better options that offer at least equivalent results and more comfort for the patient at much lower costs but many patients are not offered these alternatives. The result is a powerful wasteful industry that uses these unfortunate patients for profit.
There is an excellent segment on dialysis from John Oliver. Look it up.
9
Dialysis is certainly not a scam. I worked in the field for almost 40 years. Because some individuals or companies make decisions based largely on money, it does not mean that dialysis is a scam. Advanced Renal disease is almost always fatal. Some individuals can “get by” on a minimal amount of kidney function for a long period of time. More, however, can not. Body fluids accumulate and often cause severe symptoms such as congestive heart failure. High serum concentrations of potassium, urea nitrogen and creatinine can be life threatening. The diet and fluid restrictions associated with non-dialysis conservative treatment are extreme. Blood pressure can be uncontrollable. Severe anemia and bone disease occur commonly. This is no panacea. That is not to say that life on dialysis is without challenges. End Stage Renal Disease is also very hard on the family. Thousands of committed professionals work daily as Nephrologist, Nephrology Nurses and Technicians to care for the hundred of thousands of dialysis patients. Like most chronic (fatal) diseases, the treatment of renal disease is a series of trade offs. It is simplistic and unfair for this discussion to boil down to a “scam” driven only by money. Suggestion: go volunteer at a dialysis clinic for a month and then make an informed judgement.
17
Physicians and patients need to focus on quality of life and not quantity. What good is a person tied to a dialysis machine. I worked in dialysis. These folks had no quality. Their big thrill was to binge feed the day of dialysis.
We need to start discussing "end of life" issues much, much earlier. Not just from kidney failure but other things. I have just watched two close friends die. Both the patients and their families were totally unprepared for the outcome.
It's time physicians began teaching quality of life and end of life decisions to both patients and their families.
12
Having married into an family with genetic, inherited kidney disease, I beg to disagree with your suggestion that dialysis patients have little quality of life solely based on your experience with non-compliant patients. The middle-aged generation of my family members are currently living high quality, though medically difficult lives with kidney transplants and will likely need dialysis when their transplants fail (transplants fail after a decade or so). My mother-in-law's transplant failed 20 years ago. She has since been on 3-day/week dialysis - yes, for 20 years - along with following a strict renal diet and eventually taking coumadin and having a pacemaker implanted for heart issues. Difficult? No question. Worth it? To her and us, absolutely. She treats it like a job that allows her to enjoy family, friends, church, grandchildren's bdays, weddings, even her relationships with her doctors and nurses. It's been a life of both joy and pain. In summary: Some of us want to live, pain included. Some of us can follow a strict diet and cope with extreme medical measures to do so. To follow your suggestion would deprive my mother-in-law, my husband, most of his cousins and eventually my children of the choice to live beyond their 50s. I hope your thinking does not prevail and that options stay open for us. I dare you to look in my mother-in-law's eyes and tell her that the last 20 years of her life and the future of most of her family members has had or will have little value.
12
@heysus "What good is a person tied to a dialysis machine." "These folks had no quality."
What constitutes quality of life is very individual. Just because the lives we dialysis patients lead doesn't seem very attractive to you doesn't mean that we are no "good", that we have no quality of life.
I can't believe a person like you ever worked in health care.
4
Is the author a physician? I agree this article is misleading. "Conservative management" is certainly a treatment option, but this treatment option is equivalent to hospice. It does not reverse nor slow the progression of end stage renal disease. I do not like how lay people, no matter how informed, write these articles without adequate health care training to give informed opinions.
10
Conservative management does allow some persons with ESRD to live longer than they otherwise might. The article isn’t misleading. Dialysis can be a very difficult treatment, and outcomes are extremely poor - it is a grave mistake to imagine dialysis is a cure. There are reasonable home dialysis options that provide better quality of life and better treatment than thrice-weekly dialysis and which should be more widely available in the US, but conservative management is also an important option.
6
@Owen
I never said dialysis improves outcomes and I also never said everyone should undergo dialysis. Please do not obfuscate my comment.
I contend with the fact that the author is using the term “conservative management” as a fix all when what she really meant is hospice. As a physician myself, it is articles like these by lay people that mislead other lay people simply because the word hospice isn’t used in the proper context. In research, hospice aka conservative management has been shown to prolong outcomes. So I feel that if the author does not want to be disingenuous, property terminology should be used.
6
@Frances Conservative treatment is not the equivalent to hospice. I work in a chronic kidney disease program in Canada where we provide the education to all of our patients regarding their treatment choices: dialysis, transplant and conservative care. Some choose conservative care long before they have significant symptoms because they focus on quality of life, not quantity and are still enjoying many aspects of their daily lives. Early in my career (30 years working with this patient population) I remember a nephrologist talking about how dialysis was basically long term palliative care. Today, outcomes are better for many types of cancer compared to being on dialysis if you are over 75 years of age but people we see are still relieved to hear they don't have cancer, 'only kidney failure'.
3
Thank you for this timely piece. The general public is ill-informed about dialysis and certainly the patient and family have a right to be fully informed re: what is actually entailed by dialysis, not some hazy notion of being hooked up to a machine to prolong life. As you point out, for the 80-something patient the prolongation of life is not even true and other options of medical management may be equally effective.
My dad in his mid-80's, who had survived open-heart surgery but lost adequate kidney function, was put on dialysis in the hospital. He was upset with himself for consenting, after he learned what life on dialysis would be.
When he began the several-times per week outpatient dialysis, he was dismayed to find that in his words the fellow patients he encountered seemed mostly demented. His spirit was broken and within two weeks his body did him the "favor" of developing fatal pneumonia.
My dad was a very independent man and no one in the family was aware of any informed consent for the decision of dialysis. And it happened so quickly that we had no chance to investigate what dialysis would entail.
It is so helpful when there is media coverage of what elderly patients' experience of dialysis is at this point in time.
12
This article mirrors, in more ways than one, the problems too many patients experience with our "health care" system. Ongoing and consistent care is hard to obtain because the insurance companies add and drop all sorts of things during the year. Access to care that might prevent or stave off the need for dialysis is sketchy. Too much of our ability to receive medical care when and where we need it is governed by the insurance companies and our ability to pay for the care.
Most people don't realize that there are sizable holes in what their health insurance covers until they need to use it. The ACA started with good intentions but now it's one more government program that fails the middle class and limits our ability to receive the care we need, preventive and otherwise. I would bet that there are thousands of Americans who go without needed care, not because they want to but because it's too expensive to pay the premiums, the deductibles, the out of network costs, the co-pays, and whatever else isn't covered.
We don't have a real health care system in America. We have a wealth care system. It's not just kidney dialysis that is a problem. Management of most chronic diseases in America is a problem because of our wealth care system.
23
It’s all about the billing. I saw this too when my mom came down w a blood disease. They just can’t see her enough. Somebody’s making money on all the routine treatment. We need to stop the perverse incentives and put more decision making w patient and doctor.
9
In many, but certainly not all, ways John could have been my father. Having developed kidney disease in his 40's (in the dawn of the dialysis age) he spent 8 hrs a day 3 days a week on dialysis, until he regained enough function in one kidney to get off the machine. He never wanted to go on dialysis again (it was a LOT harder process back then) Managed conservatively for the next 20 years he did well, but gradually his kidney function waned, his diet became more and more strict, and he lost a lot of weight.
Eventually he went back on dialysis in his late 70's. He remained active, and worked three days a week; he managed, even after my mother died, driving to dialysis and taking a hired car home afterwards (and again the next morning to get his car.) Occasionally he arranged dialysis in New York, and would fly there for a few days. In the last few years of his life however, his weight was down even more to 112 lbs (he was literally skin and bones) food didn't taste good, he was tired all the time, he had more problems with his eyesight (indirectly related) yet he still wanted to make it to 100 years old. He died at age 83 from cardiac complications after a six week hospitalization for broken hip and pneumonia. One of his regrets was that he waited too long to restart dialysis, when he already had lost 40 lbs. of muscle mass, not realizing how much improvement there had been since the late 60's. He was NEVER a transplant candidate.
4
Full disclosure: My husband, a Flushing-native, age 45, is 3yrs on dialysis, hoping for kidney transplant (NYC has a 7yr wait on average). I also lost my grandfather 20yrs ago to kidney failure, after he contracted pneumonia following a successful kidney transplant. From my very intimate vantage point, I think this article is disingenuous.
Dialysis, similar to chemotherapy, is about buying time - time to live, love, and maybe say goodbye. In a society where many seniors are put out on the modern version of an ice floe - hidden away in homes, or forgotten until their needs are inescapable - it seems likely that this talk of "conservative management" (really palliative EOL care) is more about easing the family's burden than securing the patient's dignity.
3
Thank you for this well researched and well written summary of a very complex issue. However, it is very important to point out that dialysis can be initiated in at least two completely different clinical scenarios; emergently for an acute illness like the elderly man who fell and was placed on dialysis in the emergency room, or in a patient who slowly and predictably loses kidney function over time and eventually meets clinical criteria for dialysis.
In the first case, emergency dialysis allows the patient a chance at survival after a reversible illness or accident, and in many cases dialysis is not required long term. In the second, the process is so slow that multiple conversations should be possible with the patient and their family before a decision is required, meaning a lack of informed consent about options is unthinkable and should be considered malpractice. Dialysis is not a one size fits all therapy that should be condemned whole cloth, nor should it be an expected medical technology to "prolong" lives for anyone with end-stage kidney failure. It should also be pointed out that a patient or proxy, can at any time stop dialysis when it does not coincide with their personal goals.
16
“Our financial incentives are all about putting people on dialysis”. From the horse's mouth, the Doc admits it's all for profit. My older brother-in-law is going through dialysis after recently losing his wife to cancer; she passed in just two days after release from hospital, totally unexpected. Somehow, I think she's better off than he is. He lives alone, although he should be in A. L. due to other health issues, but like the Energizer Bunny...he keeps going and going, and endures every type of procedure his physicians can come up with.
3
Dialysis is a symptomatic treatment as well as a measure to prolong lives. If it did not improve the way the patients felt there would be many more patients who would quit this treatment. Furthermore, some patients who quit return to dialysis if they can not cope with shortness of breath, symptoms related to build up of acids, vomiting, etc.
We should also remember that there is nothing novel about conservative treatment of kidney failure; it is practiced all the time in thousand of patients before they start dialysis treatments.
12
I’m a general internist. There is no question that aggressive medical and lifestyle management makes a difference in renal failure and a host of other diseases. But access to education, exercise programs, regular care visits, and even the most basic medications is sometimes virtually impossible. Money, insurance, poor transportation and job demands often hinder my patients and lead to poor outcomes or reliance on dialysis, etc. Every day I think if more money were spent on the basics we’d have better outcomes and cost savings but those at the top don’t seem to care.
15
As a now-retired Nephrologist, it is EXTREMELY important that patients with end-stage renal failure understand that the advice in this article is misleading and potentially dangerous. It is true that conservative management can for some patients forestall the need for dialysis or transplantation temporarily. However, once patients reach end-stage renal disease, dialysis or transplantation is the only safe alternative. Without it, fluid accumulation and electrolyte imbalances are inevitable; the critical concern is hyperkalemia, which is essentially unavoidable and predictably lethal.
40
I agree how misleading this article is, and actually spouts a huge error: dialysis was NOT created to keep patients alive between transplants. Dialysis was developed back in the 1950s, well before transplants were even possible. Also, it portrays Peritoneal dialysis as some lurking entity just waiting to endanger a patient’s health. I did PD for 1.5 years and got peritonitis once, and it was a fluke situation that caused it.
If someone is just approaching ERD then maybe they can stave off dialysis a bit with ultra-careful management
I truly don’t understand how the author of this article could be so irresponsible.
10
What I find most disturbing - is how many dialysis centers are owned by the same who recommended treatment. This vertical integration is insidious.
18
True. I was able to find a “chain” but where my nephrologist’s practice was the doctor for the facility. This seemed a bit less “incestuous” as far as medical care went.
1
Dialysis is a cash cow in our profit driven dysfunctional healthcare system.
13
I think it’s also and easier way out than trying to coordinate care in a complex system with roadblocks at every turn. One of my trainers used to say “the path of least resistance always wins.”
4
Place the blame on the medical-industrial complex. There's money in them thar kidneys. Getting insurance to cover something expensive that is SUPPOSED to be rare is a recipe for somebody making it a niche business. Dialysis centers are just about more common than carwashes, where I live.
12
@Kilroy71
from a retired medical attorney:
As others here have noted, two companies own free standing dialysis centers and deliver End Stage Renal Disease program services to patients. There was so much fury over the mish-mash of private payers coverage and non-coverage policies for patients with chronic kidney disease (CKD) that Congress stepped in to shift eligible ESRD costs to taxpayers nationwide.
One of many cautionary illustrations of what a "Medicare for All" country could entail.
FACT: Only two of three goals can be obtained in any country's medical care: access + quality + cost always compete. Until the ACA, we rationed by limiting access to care. We're still figuring out post-ACA policies and costs.
5
@n.c.fl
Why should Americans be subject to a "mish-mash" of health insurance policies when a single-payer plan would provide us with equity, efficiency, effectiveness and affordability of healthcare in this country as it does elsewhere in the civilized world?
We still see mechanisms to limit or discourage health care in the insurance industry: high deductables and co-insurance costs; narrow care networks and "risk aversion" on the part of the insurers via careful selection of policy holders; let the taxpayers pay for the "high-risk pools" of the chronically ill.
Let's jettison the health insurance industry and vote for a single-payer program in this country!
1
@n.c.fl "Only two of three goals can be obtained in any country's medical care: access + quality + cost always compete."
But you do realize that other countries manage to ensure better access and superior quality of medical care at a much lower cost than the U.S.?
Please don't make general statements about health care in other countries if you know nothing about it.
This is a follow the money issue. Dialysis is the only treatment covered for everyone through government funds. For some reason, when congress passed the laws governing this coverage they stupidly thought the problem would somehow go away. Instead, it is one of the largest medical expenses that Medicare pays for, with no end in sight. Peritoneal dialysis, which is performed at home is not the money maker that the big dialysis centers are. As it said in the article, doctors are not paid enough to bother with conservative management. Diabetes is by far the more prevalent problem, yet there are no laws governing supplies to control blood sugar. This will lead to more people needing dialysis in the future. It is time to reassess the sacred cow of government coverage and encourage conservative management and home dialysis instead of letting the costs spiral for a treatment that extends life but at the expense of quality.
14
@S.L.
Here we go again with profitability being an issue. If a physician will not manage the care, we find another professional who will. I agree that conservative management should be encouraged and any efficiencies which will reduce costs without compromising the well-being of the patient.
1
As a transplant and dialysis access surgeon, this article is correct as far as it goes, but misses a large part of the problem. By far the majority of patients who end up on dialysis do so emergently rather than in a controlled fashion - less than one third of all new dialysis patients have had adequate (>1 year) of care related to their kidney disease prior to starting treatment. This is due to the catastrophic lack of access to primary medical care in this country. 'Conservative' management requires early detection and intensive therapies until the right plan of care for the individual can be developed. Of course there are huge financial incentives, but everyone should be aware that approximately 70% of all dialysis centers are owned by 2 for-profit corporations, Fresenius and DaVita, and physicians there are employees, not owners.
End stage renal disease (ESRD) is a disease of the poor and the underserved, and very often by the time their disease is identified they are in immanent danger. These patients 'crash' onto dialysis to stave off death, and then they are on a ride that is difficult to get off. Conservative care is not an option for the great majority of these patients. While I appreciate the light this article shines on a difficult problem, unless we address the underlying lack of access to preventative medical care in this country we will never solve it.
182
@Claire My brother contracted Type 1 Diabetes when he was 3 and his kidneys failed by age 30. You are absolutely correct in that the only consistent healthcare he had was Medicare, which was conferred upon him when he became eligible for dialysis. Prior to that he relied on insurance through work, but as you can imagine, his health interfered with that. He endured 3 organ transplants, 1 from a family member, and 2 from the donor system. It was the 3rd transplant that killed him from transplant related pneumonia. He was 42, perhaps he would still be alive if he had stayed on dialysis.
1
@Claire
There we are: "the catastrophic lack of access to primary medical care in this country" and as a result, the severe lack of preventative care and the 'crashing' of people into dialysis, particularly the underserved poor. And the "huge financial incentives" for entrepreneurs and their dialysis centers.
If we had a single-payer health care system, one agent, the Federal government, would negotiate prices for renal dialysis with these business tycoons and their hedge fund managers which own the dialysis clinics, i.e. one buyer in a market of several sellers -- and prices would come down. And those who could not afford 'platinum' health insurance plans would have the same access to treatments such as dialysis.
In addition, we would incentivize medical students to become general practitioners so that preventative care -- and simply CARE -- would be better distributed to everyone.
4
@Roberta
I am so sorry he had such a terrible time. I do hope he had some good years with the transplants, but some people do struggle more with transplants than they do with dialysis, although it is uncommon. Another fact many people don't know is that after three years with a transplant, the Medicare coverage for medications (including immunosuppression) ends, leaving any transplant patient who cannot obtain insurance in an impossible situation. This, despite the fact that paying for the medications is much cheaper than the costs of dialysis, which of course Medicare would pay for.
8
I'm wondering why there's no mention of peritoneal dialysis in this article! It is a form of dialysis that can be performed at home, and many people feel it offers a greater quality of life than hemodialysis, while giving many of the same benefits.
7
@Laura
Nocturnal home hemodialysis is another option that's available to many patients and offers a far better quality of life, but not many patients are made aware of this option.
9
@Laura
Read the article. Peritoneal dialysis is discussed.
2
@Laura It is mentioned in paragraph ten.
The issue being raised should not be limited to dialysis. The real question is when to stop aggressive medical treatment for any individual.
Not long ago, family doctors had a unique place in healthcare. They knew and treated patients over the course of the decades of their lives. They knew old Joe when he was the handball champion of the neighborhood. When old Joe first became ill, they referred him to the medical center where the experts sorted out the problems and provided state of the art medical and surgical care. Old Joe contued to his family doctor after hospitalization as well as any needed specialists.
The family doctor had the unique perspective of where old Joe was in his travels through life. The family doctor usually knew and provided treatment for other members of old Joe’s family.
The family doctor had the unique relationship with old Joe and his family, and was in position to have the critical end of life discussion.
In the 21st century, a time of advancing medical technology, health care must not lose sight of its humanity. Doctors, patients and patient’s families need to sit down together and decide on the best and most humane care. Each discussion will be unique and based on ethical and religious principles as well as medical prognosis and concerns to limit pain and suffering.
20
When corporations run medicine we can no longer have the long term relationships between doctor and patient much less doctor and community. My hospital replaced all the community doctors to commuting physician technicians in the name of high quality care. They don’t care, they don’t know the community, they don’t pay local taxes or contribute to the local economy. They take and don’t give!
13
@Peter Casale
I hear you.
1
@Peter Casale
This type of consolidation is happening all over the country and doctors are becoming quasi-partners/employees of huge corporations. Part of this is a defensive move against "Accountable Care" organizations and programs which are trying to define care "quality" and so banding together into business networks helps to spread out risk which is being shifted from payers (insurance companies and the Centers for Medicare and Medicaid Services) to health care providers and their patients.
Perhaps I think of things to simplistically, but "accountable care" reminds me of a time in history when doctors were only paid when their patients became well. Perhaps a tyrant would even have his physician killed had he not prevented the death of his loved one. At some point in history, physicians decided they would be paid for their best practice and nothing short of that. But they also were paid on a sliding scale, based upon the ability of their patient to pay.
I would like to say that dialysis is an option that my father chose. He was 36 years old when his kidneys failed. He and my mother were raising 5 kids from 9 to 19. Both my parents worked full time and continued to do so after he went on the kidney machine. He had a option, one that many of those in years before him did not. He could go on dialysis. It was 1972 , he was a patient at U of M and he and my mother were trained by them to have him "run" on the kidney machine at home. That is what they did, the kidney machine was in our dining room. Every other day he and my mom would come home from work at around 5:30 and proceed to get the process started to filter his blood. he worked all 12 years he was on dialysis. First it was 6 hours to run, then it went down to 4 hours. I know now how hard it was for him and my mother to experience that journey. A chronic disease is a heavy load every day, no can know what the patient is going through but them. Having a great support system, my mother, home dialysis, a good doctor and up to date health care from U of M contributed positively to his experience. But the most important thing was his attitude and perseverance to make the best of a very tough situation. He died 12 year later of heart issues. I am forever grateful he had the option like dialysis. Those years he was with us were priceless. Lets all work on improving the options for those with chronic kidney disease. It makes a different to so many people.
36
“Our financial incentives are all about putting people on dialysis”
We're talking about system driven healthcare, where the needs of the system trump the needs of the patient.
15
My 87-year-old father had just been transferred to the Alzheimer's unit in the facility where he resided. He was also virtually blind and totally deaf. He faced a miserable existence, so I'm sure he decided it was time to tell his body to check out. He began running a high fever, was transported to the ER (despite paperwork we had signed saying NO to any medical intervention) where we were told he was in kidney failure. They suggested dialysis.
I looked at that doctor and said something to the effect of, "Are you crazy? Let him go." Families need to quit forcing people to live, subjecting them to torturous treatment, when there is no hope for a decent quality of life.
He had about 8 hours of complete lucidity which was shocking. He then died peacefully 3 days later, back in the facility, where a family member sat with him 24 hours/day to make sure the facility did not send him to the hospital again!
138
@Karen K My mother was 89 or 90 when she began dialysis. It was brutal and it left her exhausted. While she continued to live at home with live-in help, her whole life was severely curtailed.
She also had heart disease and ended up in the hospital for TIA. Her directive refused feeding tubes and she hadn't eaten for three weeks -- but! -- she still had to have dialysis.
I was sitting with her in hospital dialysis and she said, "I have to go! I have to go! Can't someone please help me go?" She seemed out of it. "Maybe I should give it another whirl," she said. "What do you think?"
Later, though, back in her room, she was totally alert and very angry. She pulled herself up on her elbow and said in a very dark tone, "I don't know why we couldn't get this business …. *finished.*"
She wanted to go home. Her release was scheduled for a Tuesday. When Monday came, she was unconscious and -- surprise! -- had to have dialysis.
Mom arrived home Tuesday around 4:30pm and she died around 8pm.
I'm grateful that dialysis is available for people who need it. But giving dialysis to a terminal woman for no damn reason is sick and cruel.
Patients and their families have the right to be informed of their options. Thank you for this article.
51
I’ve seen this many times. How unfortunate!
3
@Karen K - what a beautiful response.
3
I retired after 40 years as a nephrologist.
Any attempt to assume that all patients at all ages are equivalent is untenable. I consulted on many elderly individuals. Some were is good mental and physical health except for kidney failure. One gentleman in his 70s rafted down the Colorado while on dialysis. Others already had multiple serious irreversible conditions to which the burden of dialysis would need to be added. In many such cases I discouraged adding dialysis. It is imperative that the patient/family are fully informed on the realistic outcome if dialysis is added.
Death from kidney failure is one of the "easiest" for the patient. They loose appetite, energy, become confused and loose track of time. They rarely experience pain. For this reason I always told prospective patients that they were always making a decision: to begin dialysis, to continue dialysis or to withdraw from dialysis. In the event they chose to stop they were always told that it would be painless and that their decision would be honored.
97
@RCK I hope doctors inform their patients about the side effects of kidney dialysis - on the Mayo Clinic's website, here are just a few:
Low blood pressure (hypotension).
Bone diseases. If your damaged kidneys are no longer able to process vitamin D, which helps you absorb calcium, your bones may weaken.
Fluid overload. Since fluid is removed from your body during hemodialysis, drinking more fluids than recommended between hemodialysis treatments may cause life-threatening complications, such as heart failure or fluid accumulation in your lungs.
High potassium levels (hyperkalemia). Potassium is a mineral that is normally removed from your body by your kidneys. In severe cases, too much potassium can cause your heart to stop.
Amyloidosis. Dialysis-related amyloidosis develops when proteins in blood are deposited on joints and tendons, causing pain, stiffness and fluid in the joints.
Depression. Changes in mood are common in people with kidney failure.
4
@Karen Cormac-Jones
You are listing the side effects of kidney failure, not of dialysis. Dialysis, especially hemodialysis, is a poor substitute for adequate kidney function. Imagine trying to accomplish what the kidneys do normally over the 168 hours in a week in 3 sessions of 4 hours. It is an incredibly drastic and physiologically disruptive process for many people, and was never intended to be what it has become today - a life sentence, even if life-saving in the short term.
5
This is a perfect example of how our medical industrial complex here in the US works. Other alternatives that may be better for the patient, MUCH cheaper - not even offered to most. And we wonder why our costs are so high. Big pharma is no different. A pill is the answer to everything no matter how much it costs. We need to find other ways (like the rest of the world does) to treat what ails us. Get second and third opinions. Money is all that matters to doctors, hospitals and big pharma. Why don't we all get that by now?
7
@Sarah99
Although I disagree with your generalizations, I take your point. May I recommend a Single-Payer System? Professionals would still be well-compensated but it would likely weed out those who are the most venal. Drug companies would have to negotiate drug prices which would be nationally uniform and fair, otherwise we as a country would take our business elsewhere.
When you are beginning to decide who to vote for, and you are judging your candidate, there is one important litmus test: "Do you support single-payer health care, yes or no".
1
Joke heard in the physician’s lounge:
The oncologist learned his patient just died, so he hurried to the gravesite to provide one more course of chemotherapy. He was disappointed to find the grave dug up, the coffin missing, and a posted notice: “Gone to Dialysis”.
18
My husband started dialysis when his kidneys failed at age 78. This was 2 and one half years ago.He always feel well after dialysis and is very happy that the treatment is available. He spends four hours per session in a comfortable chair reading or watching TV and enjoys his life. He has four days per week where he can forget about his lack of kidney function. The alternative that seems to be recommended here of refusing dialysis and accepting an imminent "easy" death is extremely irritating to us and certainly does not apply to all patients.
19
I agree with you! One of my father’s best friends started dialysis at 88 years old, after years of managing his CKD with diet. He lived to 93, enjoying many happy days with his wife, children and grandchildren. He even found himself enjoying his dialysis days because he got to chat and discuss Wall Street Journal articles with his dialysis buddies three times a week! When it comes to ESRD and dialysis, like any chronic and treatable disease, the entire person should be taken into consideration, no matter the age!
12
Thank you so much for this article! It's high time for an open discussion on ESRD, Dialysis, Informed Consent, and Medicare funding. Having worked in this setting as an RN for over 20 years, I believe a great deal of good would come from requiring patients and families to view an informed consent video which describes each option as experienced by a real patient, including conservative care. It could be produced by CMS. And patients, particularly the elderly, should be given the option for less frequent dialysis, an intermediate step before hospice/palliative care.
13
My husband died two years ago at age 85. Two years before that a nephrologist told him that without dialysis he would be dead in six months. My husband refused the dialysis and together with a wonderful general internist we managed a conservative medical care protocol consisting of diet, high blood pressure and heart failure control. For two years we were able to manage many of the activities he enjoyed. We, had time to just be with each other and our family and friends. We even managed two more annual winter trips to Florida. When the final days came and we accepted hospice care , the nephrologist told me how angry he was when we refused dialysis. But he said he could never have predicted how long he would live without dialysis and the quality of life that he would have during that additional time. In the end he said he would not have had that quality of life on dialysis and we would probably be at the same point as we were at now. He said he had learned a lot. How sad that there is no one to advocate for patients like my husband. I am a health care professional and I am grateful that I could advocate for him. Those last two years were in many ways the most memorable of our 56 years together.
119
@sally
I'm sorry for your loss. Thank you for sharing this important and moving story. Doctors have a lot to learn from brave patients like your husband. I'm glad this doctor had his eyes opened.
6
This article was a good reminder of another thing to add to my living will. (My state has a form with only open ended questions that are difficult to answer thoroughly without knowing a lot about end of life care.)
Seven years ago my kidneys failed as part of a massive allergic reaction to an antibiotic. I was started on dialysis in the ICU, and through my weeks of inpatient recovery, and continued it after finally getting home. After almost 6 miserable months on outpatient dialysis* I was switching to peritoneal, and had already had the port put in, when for no known reason I regained enough kidney function to live without dialysis.
Seven years later I would never start dialysis again. The almost an hour drive each way no matter the weather, the hours on the machine, and then another hour or more trying to get my normal low blood pressure up high enough that I could leave.
Adding that strain again just wouldn't be worth it.
* The 6 mo outpatient dialysis date is important, because that's when the any age access to Medicare kicks in.
13
Not having to go to Dialysis has many positives but for those who need this treatment, one often overlooked cost is transportation:
Dialysis patients cannot drive themselves home from treatment (and probably shouldn’t drive to treatment). Transportation to Dialysis is not covered under Medicare or private insurance(usually). If there are no Family/Friends to provide transport - the cost for each round-trip; weekly or bi-weekly Transportation falls on the individual’s resources or the availability of city/county/state transport.
For these public transportation resources, each Dialysis trip is a permanent obligation - without recompense.
Even if the treatments are only once a week - that equals104 rides each year.
Dialysis patients should have options AND transportation MUST be included as a Medical expense - so Para-Transit organizations can continue to provide these life-saving rides without going bankrupt!
33
@Theresa Davis I generally agree with you - except for your statement "Dialysis patients cannot drive themselves home from treatment". I do drive myself.
(And before you think that my kidney disease isn't "that bad", I have anuria.)
4
It all depends on how you feel after. My brother in law did drive himself for a while until he was so weak after that he became a danger to himself and others behind the wheel and then had to have someone drive him there and back. That is problematic to family because you never knew when you would be able to leave. They want you to go right away and waiting for someone to come pick you up is not welcome. (This is also the fault of DeVita which is a giant money machine not a dialysis center). The option of having Medicare pick up the tab for driving may lead them to look for maybe in home treatments more. But I fear that DeVita has too strong a hold on the medical system.
4
Years ago I overheard two physicians arguing in a hospital. One of the docs yelled out to the other "at least I don't dialyze dead people for a living."
16
A very important, and very true, article. Thanks, NYTimes.
This very accurately reports my father's miserable experience with dialysis. What he needed, and what he/we requested over and over—but to no avail—was something between full 3-times-per-week dialysis and, what was offered as the alternative—nothing at all, i.e. pretty-immediate death. Sorry, we kept being told, simply not an option.
Because of the nephrology near-monopoly in Charlotte, NC, ESRD patients there have no options. Seriously, check out https://www.metrolinanephrology.com/dialysis-affiliations/ ...and this is for just a moderate-sized city. It is all about the money and what is most convenient for the nephrologists-in-charge/shareholders. The monopolization, profiteering, and treatment of kidney disease in the U.S. is a racket that in no other industry in America would we accept. And it's the patients who suffer.
13
@SRP
Healthcare is a huge industry and is hugely profitable for many, although not all. This is why there are a myriad of health-related businesses, not just dialysis centers, which are reaping huge profits. Our health care environment is made complicated by the health insurance industry and we would be better served if we had a single-payer, universal health care system. It would be much better at managing costs than our Balkanized private health insurance-dominated system.
1
Nephrologists shouldn't be allowed to own shares in or run for profit dialysis centers. They have a distinct conflict of interest and are making piles of money. No incentive to keep people off of the treatments. I was a palliative care NP and found this cozy arrangement quite disturbing. Patients need to be educated to their options without being persuaded by physicians who directly profit from their treatment.
93
@ach, did you see the article the NYT did on Davita? They charge over $1,000 a treatment...meanwhile we at the VA charge between $350-500 a treatment. There is no smoking gun in healthcare reform but this is one of them that could be changed. This is why CA wanted the law on their ballot to be voted on. I just don't think people know how much the private companies (which are full of people) are greedily taking our tax payer dollars.
10
@Calleen de Oliveira
Ha! A perfect example of price gouging in the private health market, whereas; the federal government, i.e. the Veterans' Health Administration has better negotiating power as a large federal agency. It gives you an idea of what the true cost of that dialysis treatment is.
I had a similar experience in that an orthopedist ordered an MRI for my knee. My out-of-pocket cost from a free-standing private MRI business was $12,000. I was advised that the cost would be higher at my local teaching hospital. I contacted the VA clinic mistakenly (I am not a veteran) and they quoted me an out-of-pocket cost of $350.
And the MRI business told me that if i did not file an insurance claim they would charge me only eight-hundred dollars. That should be illegal.
10
@ach You assume a lot of greed amongst nephrologists, probably unwarranted (sure there are some bad apples out there). One very big upside to physician ownership is physician-decision making in the operation of the unit, which the previous NYT article based on the NEJM editorial completely neglected. Dialysis units are for-profit entities. Would you rather have patient care decisions made by the people who actually take care of you and look you in the eye? Or a corporate suit who’s never met you and only has profit as a motivation?
3
I teach my nursing students to never assume anyone, especially an older adult, automatically wants dialysis. Always ASK and discuss. Many patients have seen family and friends go through dialysis and want no part of it. We have to respect their decision.
23
I started dialysis 20 years ago at the age of 43. It was no walk in the park but it had to be done in order to stay alive. 2 1/2 years later I was lucky enough to receive a transplant which lasted for about 15 years.
I returned to dialysis after the transplant failed and have been on it now for a little over 2 1/2 years. This time it's peritoneal dialysis which in my opinion is vastly superior to hemodialysis in many ways.
It's been challenging to balance the kidney issue with the other requirements of life like a full time job and a long commute but I've done it.
During my time with the transplant we traveled extensively domestically and internationally. Now on peritoneal dialysis we find it's fairly easy to travel by both car and plane to various destinations.
I'm hoping for a second transplant and have been working toward that goal for several years.
I would never consider so called conservative management or letting nature take it's course. There is too much to live for.
21
@Cirago Each to his or her own. All options need to be presented.
11
@Cirago you were in a much different position at the age of 43 than many of the cases discussed in this article. Please bear in mind that there are often no "right" answers, other than those made with full and complete information about the risks and benefits and individual preferences regarding quality of life.
5
Another article demonizing the greedy, paternalistic medical profession. Yes, we push patients to do what prolongs their lives. And dialysis does that. Most people, while detesting dialysis, choose it over a quicker death. Some don't. I support those, too.
Same as with chemo for cancer. You would be shocked at how people cling to life, and any hope, at the end. Putting up with one round of chemo after another.
This last week I spoke with a patient over 80 years old who has an eGFR of 7. He just agreed to get a dialysis fistula. He is in excellent health otherwise. He doesn't really want dialysis but has a very sick adult child who he feels responsible for. He knows dialysis will allow him to be a caretaker for longer. Who am I to judge?
People who dialyze, on average, live longer. So do people who quit smoking. Should I expect to soon see an article slamming me for hectoring people to quit their enjoyable cigarette habit?
14
@epistemology,
I am also a physician and I agree and I think that your points are well made. Some of the comments do show readers viewing this an an example of a greedy, paternalistic medical profession. Point I would make: This reaction is typical of some readers regardless of an article's balance and objectivity. I don't find the article itself to be demonizing. It doesn't push an opinion that dialysis should not be offered. It does however rightfully point out that too many patients do not feel that options were offered. (Maybe they were offered but they don't now recall...we know that situation well). Nonetheless, we can do better about informing patients of options, and let people know that an option which usually will result in dying sooner is not synonymous with "giving up".
Still, I have to chuckle: I have gone out of my way to offer treatment plans A and B to a patient and family and done it in detail and with balance. The patient chooses plan A. One week later the patient sees another doctor and the doctor asks what plans were offered. The patient says only plan A was offered. A patient asks me how long they have to live. I say I don't know, I have seen patients with this condition live anywhere from 6 months to 6 years. A week later the patient tells the nurse, "The doctor gave me 6 months to live".
I'd be curious to know what % of patients in countries with lower dialysis rates feel that they were fully informed about and offered dialysis as an option!
13
Physicians are notoriously horrible at communications. How many times was communicating attempted? -with family members included? -any dedicated counselors?
I fear it will take a generation post-fee-for-service before responsibility and competency can be restored rather than 'it is the patients' fault' mentality exhibited in this comment.
.
3
@don.
I agree with what you have written, but you have left out another scenario, and I again emphasize that each client must be viewed as an individual and the treatment plan individualized. 18 months ago my kidneys failed quickly and I believed I was dying and was accepting of that. I wasn't eating and my world had shrunk. My blood work indicated ESRF. When my nephrologist saw me he did not give me an option. He told me what I had to do, and he wrote it down for he realized nothing was registering in my head. I had a Central Line put in the following morning and had my first dialysis treatment that afternoon.
Once I was pulled back from the dying line and could think again, I learned about options and could take control of my own life again.
I have since recovered enough kidney function to be off dialysis for months at a time. I have learned to ask many questions of a Doc, but if I am not able, I thank God my kidney Doc cared enough to push me in the right direction.
9
Dialysis is a medical business. When you see free standing centers owned and operated by doctors and medical practices you know "Houston has a problem". I wonder how much research is done on cheaper and more effective dialysis methods. One hates to by cynical but oversight of capitalism demands cynicism and skepticism.
16
@GUANNA The price for dialysis varies greatly in the US. One of the clinics where I was dialyzed on vacation charged $500 per treatment, another (in the same city) charged over $2000.
For all we know, "cheaper and more effective dialysis methods" have been found, but that doesn't mean that the savings will be passed on to Medicare (or whomever else is footing the bill).
1
Thankfully, its now out that hemodialysis for kidney failure is unnecessary. As it turns out, we are learning that many of the other organs are also unnecessary; for example, the brain.
6
@CAK My relative with renal failure saw highly rated nephrologists in 2 different regions of the country over a 15 year time period and was never referred to a renal dietician. All the while his kidney function continued to decrease and it was not until I researched the matter online and told him to request a referral, did he finally see a dietitian.
At that point he was told that it was not the norm for her to see him then and only a very limited 1 or 2 appointments were covered by insurance. The rest he had to pay for out of pocket.
Now, while on dialysis, he does see a renal dietitian during clinic appointments every two weeks, but too little, too late to regain the lost renal function a more kidney friendly diet might have offered, had it been adhered to for the past 20 years.
13
Thank you so much for this article! After a week or two of dialysis my 85 year old aunt refused to continue doing it. She decided that it had too negative an impact on the quality of her life. She died maybe 2-3 weeks later at home with her children by her side. Per my cousins she had no regrets over having made that choice.
This was maybe 15 years ago. I don’t believe this alternative keep me of care was offered to her. I hope other people will at least consider it.
10
from a former AMA attorney
There is a model one-page plain-English Physician Orders (POLST) that works in all states and overrules any state law that is contrary to the terms of this document--anchored in our constitutionally-protected "right to refuse treatment." Bridged to an inpatient IV ordered by a hospice Medical Director or treating MD for M&M-Morphine & Methadone or, in Catholic facilities, Morphine & Atavan.
Yes. My POLST is used in Catholic hospitals too--part of the church's acceptance of "Comfort Care Only" in end-of-life situations. Always build "pain" history to get IV M&M.
NO COST copies from Karen E. Rushing, Clerk of the Circuit Court, Sarasota County Florida. PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT FOR JOHN W. CAHILL. INSTRUMENT # 2013020520. 2 PGS RECORDED FEB 12 2013.
Only change made to this POLST for me and others in 2019 is the title: PHYSICIAN & EMS ORDERS FOR LIFE-SUSTAINING TREATMENT . . . Adding EMS to the title is the only way to interdict the Standing Orders for first responders who start all of the interventions before the hand-off to the ER docs.
Reports from seven states: EMS have seen their name in the title and called the ER docs from the ambulance to find out what to do . . .with the ER supervisor saying "Read us what it says." Then telling the EMS personnel to not start SOPs.
All good, but we have to make this our law of our land! Bottom up change agents is the only viable approach to end-of-life sanity.
16
My dad's kidneys' which were weak for many years, along with his diabetes, finally failed below 20% kidney function and he was put on dialysis at 91. He absolutely hated it. He was an impatient and fiesty man and the 3 visits a week drove him crazy, made him more depressed than my mom had ever seen him, and had him dreading every visit. Two days after we had our yearly family reunion he died of a heart attack on the living room floor at 93. I think he had given up, and wanted to go.
We were NEVER given the peritoneal option. Reading this makes me furious, as it was torture to see my dad suffer. He made it clear he wasn't going back to the hospital.
13
@Bocheball peritoneal dialysis is not an option for all patients with renal failure. Patients ALWAYS have the option to refuse treatment. Forced medical care is assault. Patients should not agree to treatments that they don't want.
4
from a former AMA lawyer:
"Death is not the enemy. Suffering is."
Why didn't Mr Everdell and Ms Oakley, no doubt holding his Power of Attorney for medical decisions, consider hospice instead of inpatient hospital? Two months is a lot of suffering. For all patients and caregivers who have fairly predictable end-of-life decisions, as here, go to hospice. Build a written record of pain not managed well. Ask the hospice Medical Director for M&M by IV -- Morphine and Methadone -- or Morphine and Atavan in some Catholic systems. Include the "refuse all treatment" and "pain management by IV M&M" in written Physician Orders (POLST). Anchor the POLST in our every-state "right to refuse treatment" that over rides state laws to the contrary.
As my father's very young, but savvy, hospice Medical Director said after he and I agreed on inpatient M&M for pain (methadone to preclude adverse reactions, including nightmares, to morphine alone): "Three hours to three days of quiet to his death." And it was.
Three days of quiet to a pain free death beats two months of suffering every time, but we have to make it happen . . .only inpatient hospice and Medical Director face-to-face to describe each unique person . . .to build trust request and get to "Yes" on the drugs to use.
6
Thank you for this information. I did not know there was another alternative to transplants and dialysis. My sister had ESRD and was told she was not a good candidate for a transplant. I begged her to get a second opinion but she refused. She had Type II diabetes as well and lost part of a leg. Things went downhill from there and she died from complications at 61. I think often of what could have been done differently and how she might not have died at a relatively young age.
Thanks also to the commenter who has a DNR tattooed on her (I think) chest. That is an excellent idea.
4
It is inconceivable that in 2019 we have not yet come up with an artificial kidney to avoid dialysis for most kidney patients. Guess dialysis is very lucrative for so many
4
@JEFF S
Check out the University of California-San Francisco's bioartificial kidney project, headed by Dr. Shuvo Roy. It's an ambitious project to create an implantable bioartificial kidney, and components may be trialed in humans some time this year, with a target of, hopefully, late 2021 for the whole deice. The device has already functioned successfully in animals (dogs) for over 30 days. It will happen, so long as the big-money dialysis industry doesn't find a way to kill it.
4
Extremely lucrative. Taxpayers contribute $20B a year for dialysis in the US and dialysis centers are paid per visit so there’s little incentive for innovation that will decrease visits.
Source (and a fascinating read): https://www.theatlantic.com/magazine/archive/2010/12/-god-help-you-youre-on-dialysis/308308/
6
@JEFF S Very lucrative. I read an article several ears ago that mentioned dialysis centers were talking patients out of transplants.
3
Excellent, informative, & useful article. Financial incentives put people on dialysis. Conservative management might imply lack of care, something physicians want to avoid. Some patients never receive information about conservative management. Doctors supporting conservative management are few / hard to find at the present time. It all adds up to unfair treatment of patients. This article should serve as an eye-opener for patients, their families, physicians, and dialysis units. Change and increased awareness of treatment options are needed!
7
This story is what makes the NYT such a great newspaper. I have gained incredible insights from not only the actual story, but from the readers and caregivers and patients who provide great insights.
I have been fighting multiple myeloma during the past 12 months. The Revlimid drug my oncologist has me on seems to have done a pretty good job of damaging my kidneys, leaving me with stage 4 kidney disease, even though I now am in remission.
Now my nephrologist is struggling to bring my kidneys back to a more useable state. She has floated the notion that I might have to seriously consider dialysis. I’ve told her I have too many plans to live my life to the fullest for as long as practicable (I am 78) so my wife and I are setting out in our motorhome in another month for another grand tour of these United States. We’ve already visited and stayed in 48 of the states so our goal is to spend time in the two remaining states as well as Canadian provinces.
23
@Robert S. Mellis If you are faced with dialysis, please talk to your doctor about the peritoneal option. I used this 4.5 years and we travelled frequently with the machine on the airplane. The dialysis works at night while you sleep. (Ok - I needed Ambien for the first few months.)
4
I have heard about this (maybe) crazy theory that drug companies see illnesses like diabetes and kidney disease are a kind of cash cow. That you don’t want to cure, because you make more money out of their long term treatment. I known aunt, who had both. She had diabetes and was on dialysis. She was pretty miserable. Dialysis treatments consumed her life. She was always thirsty and or tired. She ecstatic to get a kidney from my dad. It really changed her life.
5
There's more to the story...
It is not infrequent that dialysis patients frequent emergency rooms. It happens during or after dialysis, when rapid fluid shifts and electrolytes are imbalanced. These patients often develop infections and sepsis. Many never really feel well, even when things are going "well". They have chronic anemia. Their dialysis ports, shunts, or intravenous access sites clog and leak, often requiring invasive intervention or trips to the operating room.
As they age, as the article relates, things worsen as there are more co-morbidities.
Good that other, conservative interventions are highlighted in the piece, as hemodialysis, even peritoneal dilaysis for the elderly is foolish and wasteful for most patients.
It often serves more to fatten the pockets of nephrologists and dialysis centers than it does to enhance patient's lives.
Retired emergency physician
UCLA
31
While kidney patients are some of the sicker patients I am not sure you should be making their medical decisions via the NYT. Each patient is an individual some may want conservative management (the fast tract to hospice care) while others may want to live as long as possible. Your view as an ER doc is skewed.
10
@fsa I'm glad you're retired.
I've been on dialysis vor almost 4 years, am currently not listed for transplantation because of colon ca.
But thank you very much, I, not you will decide whether my dialysis is "foolish and wasteful".
8
Perhaps The New York Times does not know what happened on the Floor of the House in 1972.... when a patient was given dialysis there... for all in congress to watch.
There is law on this ... most interesting law.
Dialysis patients are given life time care by Uncle Sam at no cost. And other care needed is wrapped in.
Congress did not know the cost. The first year is was over $400 million. Today it is over $40 billion.
Kidney failure has many causes. The microbiologists know. A most informed scientist is Rodney Reynolds Dietert PhD, now emeritus at Cornell. He is a genius.
It is time we learned about noncommunicable diseases. We are experiencing an epidemic. Dr. Dieters knows why... and he says we cannot afford what’s coming.
I am 80.. and I understand the theory behind Rod’s work.
We humans are causing all this. All of it.
Care to know more? Call me... Lewis Family Farm is our home.
5
@S B Lewis. Ok humans cause it all. So I guess I can blame my great-great-grandfather for my inherited kidney disease? Obviously, you have some hidden agenda - shame on you!
4
@S B Lewis
ESRD is not quite the free ride that you imply. You are eligible for Medicare, with 80% coverage, some months after you begin treatment, but only if you meet the work credits requirement, or are the spouse or child of one who does. (There are a couple alternatives to the work credits, but they apply to relatively few people.)
3
My dad developed kidney failure in his early eighties - I forget his exact age. When he was referred to a renal specialist, he was absolutely clear that he did not want dialysis. No physician offered any other advice. But I found book published by Duke University - I later gave the book way to someone else who needed its advice. This book explained kidney disease and failure and provided detailed dietary recommendations. We adapted those dietary suggestions religiously. My dad lived for several years with minimal discomfort until his limited kidney function ended. We had help from hospice services during those last few weeks of his life and he died peacefully at home at the age of 86. No regrets. It took me a while to accept his refusal of dialysis, but I know now he made the right choice for him and us, his family.
119
I don’t understand why peritoneal dialysis is not offered more frequently. It is actually healthier than hemodialysis because it can be done every day. The person is hooked up at night —at home—!!!!!—-and sleeps through the treatment and unhooked in the morning. You’re free to do whatever during the day. The person is never tired...It doesn’t have to be exactly 12 hours later i f you have an evening activity and you could easily skip a day. There is also a manual version that allows you to take individual bags and do the cleansing at work in the bathroom, etc. You can lead a pretty normal life. If the person is in good mental and physical condition, they can do it themselves. Or a family or friend can be trained. I did it for my partner... it was easy to learn and left her free to go out and enjoy life....
36
@gina At age 64 I started 4.5 years on peritoneal dialysis and as you described I performed the dialysis at night while I slept. I spent approximately 9 hours a night and there were no after effects like there is on hemodialysis. However there is a toll taken like on all dialysis; it's not normal kidney function. After I received my transplant I realized how much better I felt. My gradual deterioration during dialysis was not apparent to me. But, I believe I could have existed for many years on peritoneal. By the way, we traveled several times a year (Hawaii and Las Vegas were our favorites). We carried the machine on the plane and supplies were shopped to our hotel. I wasn't going to let a little thing like dialysis stop my living.
20
@gina
Peritoneal dialysis requires a patient to have good vision, good balance, and the ability to lift bags of fluid among other things. Older people may be lacking in one or more of these areas and the situation becomes more complicated for those living alone. Also patients must perform this form of dialysis daily, no exceptions. It is an alternative to hemodialysis but it is not easy and is not for everyone.
21
So much in this country has become about money, especially healthcare. We absolutely need to change this. In California we just had a major vote to continue to allow dialysis companies to charge huge sums money. They used fear mongering techniques to make their case and they won. People’s good intentions were used to make wealthy people wealthier. The ethics of these companies are falling short in a dire way.
18
Good point. I have noticed so many dialysis centers have opened in my city. It must be lucrative to rim them.
4
@Steph
So true, a good way to vet a proposition in California is to look at who is funding the ads against it. Fear Mongering works quite well for the wealthy in this great country of ours.
2
My mother lived with chronic renal failure for over 12 years, with a creatinine of over 9.0. She was told that this was incompatible with life, but with control of fluids, blood pressure, sodium and protein intake, she lived a comfortable life at a nursing home facility. She also declined hospital visits, despite strong suggestions from the physicians at the facility. There were several times toward the end where it appeared that she would not wake up, but one visit from her two boys, and another when offered a Hershey bar, brought her back. The inevitable ensued, just after her 93rd birthday. Sometimes medicine does too much.
23
I was on dialysis for several years.
Just a few things to share. If you dialyze at night, you can sleep through your runs. You can also opt for longer runs at certain centers, which is a benefit. Also, you can arrange to dialyze at different centers, as it is all paid for by Medicare. I took long trips to Hawaii and Dallas while on dialysis.
13
My Mom was on dialysis for 13 years and died in 1983 at the age of 46 (I was 22). Seeing what she went through, I would never use dialysis. I would get my affairs in order, make my peace with God, and simply fade away
40
Wouldn't it make more sense to combine conservative management along with dialysis?
7
A realistic portrait of dialysis, which can only ever be a stopgap measure, since average life expectance on dialysis is only 3 years. The best options are, #1, no kidney failure, and #2, a kidney transplant from a dead person (cadaver kidney transplant).
Fortunately, the US could become easily dialysis-free within a few years if people just read the medical literature. 90% of chronic kidney failure can be avoided. The remaining 10% of kidney failure patients could easily get a cadaver kidney; there are already enough for them. For key references, see https://www.bmj.com/content/363/bmj.k4303/rapid-responses
9
@DrMoskowitz
For those who cannot avoid dialysis, nightime home hemodialysis is an option that offers a far better quality of life than does either in-center hemodialysis or peritoneal dialysis. Unfortunately, many nephrologists do not discuss this option eith their patients and few dialysis companies discuss the option, as it is far less profitable than in-center dialysis is.
3
A donor kidney from a living donor is far superior than one from a cadaver. Check out kidneyregistry.org for more information about the ease of laparoscopic donation. I was a non directed kidney donor (meaning I dont know who the recipient was) six years ago at 46 and because I didnt need a kidney back, it started a chain of donations (ie it went to someone who had a person willing to donate on their behalf but wasn't a match, who then donated to another person who had someone willing to bless one forward. etc. My one kidney enabled five donations to proceed but some chains number in the dozens.) I donated on a Tuesday, went home Wednesday and was walking the aisles of the grocery store with my husband on Saturday. I don't notice any difference health wise (your remaining kidney grows to accommodate the missing kidney). I lead a very physically active life as a lavender farmer in Upstate NY so it hasn't compromised my lifestyle in any way, but I have the satisfaction of knowing that my actions helped give five people the gift of renewed health.
17
I am a big proponent of conservative care. And it works until the patient ends up in the hospital. They may be in the hospital for reasons other than their kidney failure (almost always) but inevitably some member of the “healthcare team” brings dialysis to the forefront and creates a situation where dialysis is the only option. Don’t forget the family member from out of town who now imposes their opinion. Despite all good efforts between nephrologist, patient, and spouse or immediate family member involved in conservative care for kidney disease it all goes to hell in this circumstance. Now those healthcare team members in the hospital discharge their responsibilities and imposes the burdens of dialysis on the patient & immediate family & and nephrologist & dialysis clinic. It’s the easy way out for the healthcare providers who don’t see the patient in the outpatient setting. Some of this can be attributed to the corporatization of medical practice and no longer do you have a doctor but you have a clinician in the outpatient setting (often a different one every time), and a rotating group of doctors & paraprofessionals while hospitalized. The continuum of care has been disrupted.
30
@Peter Casale. I had to chuckle a little at the reference to the "family member from out of town." My husband is on dialysis but he is also a retired physician. When we discuss end-of-life issues, he often mentions the "out-of-town child" who appears in a crisis, wanting to prolong the parent's life so he has more time to resolve his guilt.
20
I worked in long term care for 7 years as the Director of Social Work. I have an MSW from the University of Michigan as well as a LCSW license. My facility had 302 beds. I was astonished at how many residents were over 80 years old and were on dialysis when they were too old or not healthy enough to have a kidney transplant. This merely prolonged death...not prolonged life.
Two things need to happen:
Physicians need to address their inability to address their own fears of death. FEAR of death. It is inappropriate to recommend dialysis to this group. Not every physician is emotionally healthy. They are humans, not gods.
Elderly patients with renal disease need to address their own fear of death. Address what “quality of life” means to you. Is enduring dialysis for hours a week, every week, a good quality of life? You can’t travel. Your freedom to live is gone. Is this a high quality of life?
FEAR of death causes otherwise rational people to behave irrationally.
Were we all living in 1920 instead of 2019, those diagnosed with renal disease would say their goodbyes and go gently into this night. Isn’t that better? Simply say “my time has come to an end. Goodbye.”
Such a twisted way to view the end of life. Face your fears. Show courage! All life eventually ends. Face it. Go when it is your time. Gently.
65
@Claudia
So true.
4
@Claudia "Simply say “my time has come to an end. Goodbye.”"
Do you ever seek medical care? Why? Why don't you simply say "goodbye"?
I've been on dialysis for almost 4 years. I, not you, will choose what is "better" for me,. thank you very much.
9
@emr
Physicians “recommend” they don’t “choose” dialysis for their patients.
People who fear death are almost always in denial that fear is driving their decisions. Others see their fear, they do not.
When a person 87 years old says “I have had a good life. A long, long life. I am okay with my life ending.”...this is good. When another person the same age chooses dialysis, that is their right to do so. It should be their right. But choosing to deny medical treatment and move to “comfort care” is also their right. I admire both choices. But, I have great empathy for patients who choose dialysis because they fear death. Prolonging death is not a good thing.
6
I have practiced nephrology since 1984.
I have seen few people choose not to initiate dialysis upon the recommendations of their physicians, making it likely that few would pursue palliative care.
Physicians and allied health care providers often do not have the opportunity to discuss end of life care for kidney disease because dialysis often needs to be initiated and continued for the recipient’s lifetime when life threatening complications of critical illness develop in the setting of advanced though asymptomatic kidney failure of which the individual may not have been aware.
Dialysis providers are held by Medicare to rigorous standards that include evidence based benchmarks. These standards are in many cases not appropriate for dialysis recipients with limited life expectancy and, in the case of polypharmacy needed for treatment of biochemical derangements peculiar to end stage kidney disease, entail treatment that is expensive, unpleasant, and burdensome. If the life expectancy of individuals with end stage renal disease is no different for those who undergo dialysis or choose palliative care, those patients who choose dialysis should not be included in measures which influence long term outcomes that facilities must report to Medicare, which bases reimbursement on whether the benchmarks are achieved.
3
That would be referred to as cherry picking.
3
After reading this article I am reminded of the case of my father in law who learned relatively late in his life that he had been suffering from uncontrolled diabetes when he had an episode of DKA. When he learned that his kidneys were failing he opted for peritoneal rather than hemodialysis. He died at home peacefully in his sleep 6 months later. He was 68. Maybe he knew best after all.
9
Dialysis is the only true socialized health care americans receive for free. They privatized it, monetized it and made it so that much wealth was generated for many. Davita is worth billions, why? We routinely see 90 year olds fearing death getting dialyzed three days a week, constantly ending up in hospitals with infections and complications. Palliative care or even hospice are taboo, why?
40
I agree with your sentiments sir but it's not free. It's at a tremendous cost to society.
19
Dialysis is complicated. I am not a medical professional but I have volunteered at an outpatient dialysis clinic for ten years. My duties are to interact with patients and provide distraction during a prolonged (3 - 4 hour) treatment that requires them to remain seated and tethered to a hemodialysis machine. Here are my observations.
Dialysis is a the lousiest and most essential part time job you can imagine. The process is tiring. When blood travels from the patient through the machine and back to the patient it inevitably reduces blood flow to the extremities. This makes the patient feel cold and leaves the patient vulnerable to painful leg cramps. It is not at all like a blood transfusion.
Dialysis requires access to blood vessels. There are a number of methods. Many, if not almost all, patients experience troubles with the access points during their years on dialysis that require surgical intervention.
Then need for dialysis is often a result of other conditions. Dialysis does nothing to treat those conditions. The result is complications that often involve steroids or steroid like drugs that often result in weight gain that further complicates their conditon.
Dialysis patients almost always have a strong sense of duty to family that makes them endure dialysis for years. When that need has been fulfilled many voluntarily terminate dialysis.
These realities that I see every time I volunteer.
186
@Ryan Thank you for posting your real-life experience.
31
@Ryan. AMEN! I could not have said it better. Someone who has not experienced dialysis directly or indirectly has NO IDEA what it is about.
My husband, a retired physician, started dialysis 14 months ago at age 75. (We had been recently married.) It has been a struggle from the start, just to get it to work. He has already had 2 procedures to fix his fistula.
He had no idea he had renal disease until his PCP told him that his eGFR was 15 about 6 months prior to starting dialysis, by which time his eGFR was 5. Conservative management was never mentioned. My husband decided against alternate treatments (home hemodialysis and peritoneal dialysis) for various reasons. He often speaks of stopping dialysis but says he does not want to leave me alone.
I have a lot of anger toward the PCP. If we had been informed when the renal disease was still in Stage 3 or 4, conservative management could have been implemented and dialysis delayed or avoided.
Because of my husband's age, transplant options are limited, but we are on a list for a kidney with Hepatitis C.
18
@Ryan I am fortunate to work in the Canadian health care system in a chronic kidney disease program where we prepare people for treatment options, including conservative care. A dialysis unit that you describe is but one option and sadly, is the most depressing alternative for anyone observing it as a patient, volunteer, family member, or staff person. It skews what is seen to the most elderly, most frail group of patients on dialysis. What is missing are those doing home dialysis, either peritoneal or hemodialysis, often at night and thus getting much more dialysis (more gentle), and feeling well enough to get on with their lives during the day. Many of the patients with whom I work are employed, participating with family, travelling, doing volunteer work etc and wouldn't trade doing home dialysis for the basic 'conventional' version if they can help it.
I say fortunate to work in the Canadian health care system because here, we can focus on educating patients and families about the alternatives and encourage them to consider the best options for their situation and quality of life, not what will make the most money for a provider.
5
Having been a renal social worker for 36 years, l can attest to the fact that dialysis has moved from optional to obligatory over the years. I don’t believe that personal financial gain is the only reason for this trend, however. Doctors do not want patients “dying on my watch.” Instead they have relied on the evolving technology to address the needs of patients with kidney disease. Most in my experience are very uncomfortable talking about the “4th option” (no dialysis vs hemodialysis, peritoneal dialysis, and transplant,) due to human if misguided feelings that by doing so means they don’t care. In my retirement years I meet many older folks who come to me burdened with resignation that they have to go on dialysis and that they have no choice. One spouse of a man with Alzheimer’s was coached by me to bring up the notion of “conservative care” with her nephrologist at a catholic hospital. The nephrologist was greatly relieved that she had and immediately agreed with her. Unfortunately he dropped her husband as his patient that day. Another 85 yo man and his wife told me that they were told they would have to leave their farm and move to a big city when he needed dialysis. In this case he wasn’t even told about peritoneal dialysis which he could do at home. Spouses of these senior citizens can be so easily guilt tripped and as a result, their blood pressures and other health issues are in jeopardy. Patient centered care should not be just a cliche.
141
@Erica Perry Thank you for posting your real-life experience. It sounds as if you've helped a lot of people.
12
@Erica Perry. I totally agree that doctors would far rather refer a patient for dialysis (preferably in a clinic so they don't have to explain all the issues, as opposed to home or peritoneal) than discuss the possibility of accepting death. Since Medicare will pay for it, there is no cost issue for the patient/family to consider. The quality of life issue is ignored. At my husband's clinic, I see comatose elderly patients rolled in on gurneys for their dialysis.
15
The article does not discuss the unrealistic expectations many patients and family have. As a physician, I have heard it many times- “do whatever it takes to keep Mama alive”. Efforts to preserve a quality, if shortened, end of life time are often strenuously resisted despite my efforts to fully explain the alternatives to invasive, futile procedures.
144
@Susan
absolutely agree. I hear a lot from people that doctors do all these procedures to make money. What I see however is families pushing doctors for more and more treatment despite advice that it is futile and does not improve QOL.
29
@Susan,
But your patient is the actual patient, not the relatives. I wonder how many of the actual patients, those who have to undergo the endless procedures, think the way you described ("do whatever it takes to keep me alive"). Many surely do, but just as surely, many others don't. When given time, attention, and opportunity to express freely, people know what they want, and they don't always want to live longer, at the exclusion of other considerations. I've seen it in my own family: people want to live and die on their own terms.
Are the patients always asked about their own wishes, explicitly? Are they asked repeatedly, as the disease progresses and their experiences change? Are they asked confidentially? These are, after all, among the most profound decisions we make about our own lives; surely they deserve confidentiality and plenty of time.
The possibility that others may be making the key decisions of one's life, guided potentially by selfish or myopic considerations, even when the patient is cognitively capable, is ethically problematic. Medical professionals should take steps to facilitate their patients' autonomy in decision-making. All it should take is some time with the patient, undivided attention, and skill in listening and educating. Of course, this is already being done in many institutions, but we all know that the level of care is dreadfully uneven across the institutions.
9
@Susan With my husband's chronic illness, learning a lot early on about palliative care was a game changer. We searched out palliative care teams, found doctors who would offer options, and began getting off the "curative" treadmill early in the game. After two years of this, he is now in home hospice care. Palliative care keeps people more comfortable, and studies indicate patients often live longer. As for my husband, he's still with us and happy.
9
He died 2 months and 2 days after entering the hospital. Why wasn’t he at a hospice facility? Terrible waste of resources. Did he refuse hospice? Did he hold the doctors and hospital hostage insisting he wouldn’t go to hospice but also wouldn’t go on dialysis? That is the only reason I can see for an American to stay in the hospital for 2 months and be offered dialysis over and over again.
13
@Julie
Why do you assume he refused hospice? Are you familiar with many places in which hospice is provided? In the home, in hospice centers, in LTC facilities, and yes, in hospitals that often have rooms set aside for hospice care, and a hospice team provides treatment. Please step back from a place of judgement.
I work in healthcare, and I want to express my gratitude to NYT for bringing this information and this alternative mode of treatment to our attention. More often than not, Medicare will pay for dialysis, while next to nothing for hospice, and as the article points out, medical practices risk financial ruin by offering this alternative, conservative treatment.
Mr. Everdell's story provides hope to those who desire a peaceful, less invasive method of treatment and higher quality of life.
25
@Julie, Mr. Everdell did not spend two months in the hospital. He transitioned to a rehab facility, then reentered the hospital when he developed a severe infection.
21
People who undergo dialysis do so in order to stay alive. To be sure, dialysis is no picnic, but it is almost always better than the alternative.
Doctors face a conflict of interest when they prescribe dialysis, which enhances and extends their income streams, instead of other, less-expensive approaches like "conservative management" that might help patients but produce lower fees.
Further, building income stream conflicts with the desires of medical policy wonks like Dr. Ezekiel Emanuel, who think about how cut Medicare/Medicaid expenses (remember death panels, you know, sending sick, unproductive, money-pit oldsters to heaven).
I know, not all doctors are money-grubbers, and perhaps Dr. Emanuel likes puppies and kittens and warm woolen mittens, but I think the way out of this morass is education and informed consent of the patients themselves.
Best-practice protocols, which govern or guide most areas of medicine, should be revised to include substantial efforts to inform potential dialysis patients of options and opportunities that are available to them, and to provide patients with access to independent, unbiased counseling on such matters.
I am an old guy, definitely a target of the death panels, but I plan to give dialysis a try if circumstances warrant. If dialysis doesn't work, or is too burdensome, I can always try alternatives. In the not-too-distant future I also expect to have the opportunity to take a final trip to a nearby last-sleep clinic.
2
@Mal T. Haven't run across a death panel yet. Not in a setting of actual health care providers. Perhaps in conservative think tanks. The ageist attitudes of American culture do exist and are real, but health care is not about 'giving up' 'letting go' or 'doing nothing.' Health care no longer looks at the whole person, or allows that any perspective other than fighting disease is the prime directive. The concept of informed refusal of care is as important as informed consent to care has been lost.
15
@Mal T I'm almost 80. I have refused medical care except for passing kidney stones since I was 70. I even had a DNR tattooed on my chest for my 70th birthday. I just can't imagine older people who want to stay alive by any means available no matter how badly it affects their lives. I hope I have a massive heart attack while I'm out hiking in a beautiful place and die before anyone can do anything. That's my idea of a good death, not dying by rotting and decaying a little at a time.
25
You had better fill out a MOLST (Medical Order Life Saving Treatment as it is called in NYS), and carry it with you where ever you medically go AND make your wishes explicitly known AND have it so ordered by your admitting MD AND be sure to have an armband on that signifies Do Not Resussitate wishes. If you don't and once the CODE BLUE has been called you're tattoo will mean NOTHING. (People change their minds, and we cannot ask during the event, 'cause you will be unresponsive). At best your rescuers will run a 'slow code', meaning they'll try to give you time to die before they really spring into action, but that exposes them legally, because without all of the above in place they are required to do what it takes to keep you alive, tattoo be damned.
6
I developed kidney failure as the result of complications from surgery which caused oxygen deprivation. I have learned that each kidney problem is different, and that treatment has to be personalized. Twice now I have gone on dialysis for 3 months at a time and then recovered some good kidney function which allowed me to go off it, the first time for 6 months, and I am now one month into my second "off" cycle, and my blood work shows constant improvement. I hate dialysis. I hate the tremendous fatigue I feel for 24 hrs.
I hate the pain for the access to my atypical fistula. However, today I feel wonderful! I will put up with this cycle as long as I can continue to live my active life. I am 80. And yes, I follow closely the renal diet.
26
@jo Glad this strategy is working for you, and that your care team is supportive.
3
@mary, I am beginning to feel fortunate that I have an excellent dialysis team/program at the Orillia hospital, but also am part of the KCC, the Kidney Care Centre when off Dialysis. I feel being taken care of by professionals who also realize that I have the last word.
4
@jo
It sounds like you are receiving appropriate patient-centered care.
Tellingly, you are in Canada.
6
Yes at dialysis centers its like sensory deprivation center. Often dialysis is needed but the routine doesn't actually need to be quite is miserable as it is-eg. Taken away from the precious prime time where there is finally some activity in a home and sitting with no conversation, no engagement whatsoever other than the droning of machines.
Instead there can be stories, media, head sets to tap into movies, conversation with designated staff who over time build some rapport/relationship. The machines tire you so this gentle engagement needs to be handled by others-.. it will still be awful for most but it can be a little better.
10
@Jaylin I take my laptop and my cellphone to dialysis. Either I work or surf the internet, just like I would if I'm at home. All the dialysis centers I've been to (except one in England) have televisions, usually one per person.
Dialysis centers in Germany have real beds instead of chairs like American ones, so if all else fails, at least you're comfortable.
3
While there are specialized nutritional counselors who are Renal Dietitians (RPG), it is shocking to learn that health insurance policies do not pay for these services until after an individual has already begun dialysis. This must be changed.
With proper guidance and monitoring of dietary intake of the 3 P’s - Protein, Potassium and Phosphorus, which become toxic in the body when kidneys are not fully functioning, (and watching sodium intake) those suffering from ESRD, (end stage renal disease) can add quality non-dialysis years to their lives.
As in many other arenas these days, the problem with our system undoubtedly lies with well paid lobbyists skewing these considerations away from common sense for the benefit of the large dialysis companies, (owned by local nephrology practices nationwide), These companies are profiting immensely from this wide spread, systematic poor patient management.
It is a national emergency that we take lobbyists out of the equation in all walks of life. They are bankrupting our country and killing us (in ways like this) for the sake of their own profit.
72
My dad received nutritional counseling and he’s not on dialysis yet. Not all insurances are the same.
7
@Susan Schwartz,
Thank you for this beautifully written comment.
The lobbyists for all these corporate interests aren’t just bankrupting our country, the policies implemented are often insane.
If our institutions, laws and policies were saner, there’s a good chance the citizenry would also be saner.
It’s at least worth considering.
15
@Susan Schwartz
Actually, Medicare covers nutritional counseling for ONLY pre-dialysis renal disease and for up to one year following transplant. All dialysis centers are staffed with renal dietitians who manage the nutritional care of dialysis patients - and that diet become highly individualized to the patient.
What would benefit everyone is if Medicare expanded the nutritional counseling it covers to more than 1 hour per year for Diabetes - which is a strong risk factor for renal disease - and expanded nutritional counseling to cover all chronic disease, not just management but prevention as well - hypertension, high cholesterol, osteoporosis, some cancers, obesity, etc.
Even better, how about reinstating that as a requirement for ALL health insurance - including Medicaid - and policies for anyone under 65.
How many cases of kidney disease could we avert?
19
My dad lost one kidney to cancer. In his late 80s his remaining kidney gave out. He went on to dialysis. This vibrant old man fought the after effects of dialysis. But I feel it brought about his death earlier than if he didn’t need it. He was 93 when he crossed the rainbow bridge.
8
I was on dialysis for a year. It took over a month and the gain of 50 lbs. before I could convince them that I had kidney disease. I went to three different facilities. After dialysis, all one wants to do is sleep. The next day there is no energy. About the time you feel better, it is time to do it again. I asked them how bad were my kidneys and they took off dialysis. I still have stage three kidney disease, but nine months later am living a normal life. At first I had to limit fluids. Now I can drink what I want. I am fortunate.
36
Believe that too many MDs have financial interest in dialysis centers. Should not be allowed. No doubt it is more lucrative than office visits as reimbursed by Medicare/Medicaid.
21
Dialysis might be good for younger people, but older people's brains are adversely affected. Or at least that was the case with my elderly, sweet-tempered uncle, who seemed to turn vicious in a groggy, half-conscious way. A shame.
As an aside: After my uncle lapsed into unconsciousness entirely, he was visited by a hospital psychiatrist who looked in, left, and then billed my aunt for a session.
41
@B.
I can think of a couple of things could cause this temporary personality change:
Low blood sugars, caused by the dialysis, especially in someone with diabetes. Did anyone check that? Because that could be countered.
Loss of oxygen to the brain can cause all kinds of altered mental status. Not sure what might cause that during dialysis, but I'd ask about it.
6
No diabetes, and he was terminal. That's why we all couldn't get over the psychiatrist's bill.
How do you have a session with a man who's unconscious? Especially when you didn't really enter the room?
(We were the sort of family who almost never left someone alone in hospital.)
My uncle died the next day.
I think my mother, who was a stickler, reported the psychiatrist to Medicare. My aunt certainly was in no state to do so.
But thank you for your suggestions. It was a long time ago.
1
Like many things the medical community provides.....just because we can, doesn't mean we should. Patients should listen to their bodies and THEN doctors should listen to their patients. And family members should stop presuming they know what's best for their loved ones. There is nothing more agonizing than caring for a patient who feels s(he) has no say in any of the decisions affecting them. They sit there, demoralized and passive, while others call the shots. Then endure again and again and again. One thing that separates us from "lower" forms of life is free will. Taking that away diminishes one's humanity. Ah, to die miserably at the end of life. Isn't that what we all hope for?
23
Many doctors under the age, let's say, of 65 see and experience medical practice as a medical business in a free market.
I've escaped their clutches several times from wanting to do surgery on me going back 40+ years.
Luckily, diet and exercise and specific exercises were all I needed and, I added other specific exercises found online in recent years.
10
Before it was judged to be discriminatory, we would round with the nephrologists and they would decide which patients could actually tolerate and benefit from dialysis, which is an invasive procedure. It has morphed into a cash cow for nephrologists and everyone gets it until they are in the grave. Dying from kidney failure is one of the easiest ways to die. Increasing fatigue and sleep until you stop breathing.
As a Med Onc I was frequently dismayed to see patients with untreatable cancer put on dialysis because “otherwise they would die”. They would then have to choose to stop dialysis and stopping is always more traumatic than not starting.
As an Ethics Chair, I was weary of being asked to see cases of dying patients who were offered dialysis and then when the patient/ family agreed to it the nephrologist would want me to tell them that was a poor decision. Sad that it has just come down to money.
221
@RB Thank you
13
@RB
Sounds like the problem is your nephrologist, not nephrology. Oncologist? Stones thrown from a glass house.
8
@formernewyorker Oh I hear you on that. But I was also a Hospice Director of a very large Hospice for 27 years and I am very clear with cancer patients when the treatment is no longer beneficial.
41
Dialysis, like back surgery, is too lucrative.
They're always a hard sell.
An MD
36
@AY
Re. dialysis being lucrative: No. It is not. I speak as a nephrologist.
Of course, I don't expect you to take my word for it. Instead, note that all the privately owned dialysis centers are being sold to the big chains (who have lower cost-of-operation because of economies of scale). If it was so lucrative, why is that?
2
@SW Even if you speak as a nephrologist - it must be lucrative for some.
I have been billed about §500 per treatment in a non-profit dialysis center, but billed over $2000 per dialysis by Fresnius in the same city!
I'd say thos $1500 difference was pretty lucrative for Fresenius.
1
"Developed as a temporary measure to keep patients with kidney disease alive until they could receive transplants, dialysis. . ."
I think dialysis was developed first, before kidney transplants.
16
@Lewis Cope
Interesting thought but incorrect.
First dialysis MAR1960 @ Univ Washington
First kidney transplant 1954 @ Brigham Hospital in Boston, donor and recipient were twins and no immunosupressants were used.
Dont wonder or think, just look it up.
3
Dialysis is immediate and bigger money for the business of medicine than patient management can ever be. Why would Big Medicine Inc. make a truly patient-centered decision?
32
Mr. Everdell was a brave and realistic man. So many of us die in discomfort, if not real pain, because of increasing futile medical interventions. We're all going to die, no ifs, ands, or buts. We can choose to die peacefully and naturally, especially if anxious doctors don't press us to extend our lives "for a few months". I refused treatment for my critically ill husband, who had been sicker and sicker over a period of 20 years, when the treatment itself would have kept him in the hospital indefinitely. I hope my son would do the same for me.
101
Mr. Everdell (and many others) appears to have been another test dummy for the intervention medical industrial complex: hook him up; keep him tethered to our bread and butter insurance payments. In the hospital, hooked up and dying dependent on machines, when what we want to do it die with dignity and free of pain.
Yet in almost every state in the USA, and countries around the world, euthanasia is unthinkable to law makers and the Roman Church potentates.
The answer is not difficult see though it is nearly impossible to affect.
Any
37
@Nik Cecere
Refusing dialysis is not euthanasia, at least not in the eyes of "the Roman Church." Catholic moral theologians agree that no one is required to submit
to a health care procedure that he judges, in good conscience, to provide little benefit or to impose significant risks and burdens.
20
@Srinivu You are incorrect. Catholic Church is a strong force behind women being required to have ultrasounds prior to abortion, with the idea that once they are forced to see the fetus they will no longer want the abortion. For every state that requires it, you can be sure the Catholic Church was a strong voice behind it.
42
@Nik Cecere At this stage does anyone really take church doctrine seriously? They are on the wrong side of so many issues.
30
Dialysis messes with blood chemistry, which can have fatal consequences if the patient's primary doctors haven't been careful prior to the onset of dialysis. My late husband went into cardiac arrest after a dialysis session, because the change in blood chemistry, potassium etc. affected heart valve function. I just wanted to warn other potential dialysis patients who might be reading this article.
49
@me Dialysis messes with blood chemistry in that it filters out the waste products, as do the kidneys. Dialysis filters out magnesium, potassium, urea, and other waste products, and adds bicarbonate and calcium. That's the point of dialysis. I am not a dialysis nurse, but as a retired critical care RN, I cared for many patients who needed & received dialysis. My guess is either the dialysis prescription was miswritten, or there was another complication. I am so very sorry that you and your husband had that experience.
17
@Kate I really only posted to try and warn others to make sure they have top notch and thorough preparations taken before beginning dialysis. Like maybe implanting a pacemaker might have saved my husband's life, but no doctor ever mentioned that to us.
10