The Dialysis Dilemma: What Would Scrib Do?

By Peter Laird, MD

Despite the demonstrable progress in recent years delivering the message of optimal dialysis, from time to time, a very negative portrayal of dialysis emerges in the popular press that paints a shaded picture of the true miracle of hemodialysis that today sustains two to three million people around the world.

I was quite disappointed to read  a recent article that ended on just such a sour note of despair with dialysis despite celebrating the stories of both Bill Peckham and Nancy Spaeth who have graced the world with lives well lived despite ESRD. After all, both Bill and Nancy are still working and contributing greatly to their families, friends and community. It appears that the author of this article failed to capture the true miracle of saved lives with hemodialysis with their example she noted, but does not appear to truly understand.

The dialysis dilemma: urgent need vs. overtaxed system

A HALF CENTURY ago, nobody predicted so many people would have end-stage kidney disease. Or that treating it, per patient, would be one of government's most expensive entitlements.

Now, nephrologist Kelly says, the problem isn't picking which patients should get dialysis; it's that doctors, patients and families seem unable to pick which patients shouldn't.

A few months ago, at a NKC celebration, he called for reconstituting "The Committee" — albeit with a 180-degree change in its mission. It was a moment to pause.

Kelly fervently believes that health care is a right. But he also thinks dialysis has gone too far.

Unfortunately, the story of dialysis today is not that it has gone too far, but that it has not gone far enough. Hemodialysis machines operate in much the same fashion as they did when the doors to renal replacement therapy swung open with the ESRD program in 1973. Since that time, despite the technological revolution that we have seen throughout modern medicine with improved survival from technological advance, the basic components of hemodialysis remain remarkably the same. Although even here there are indeed improvements in buffers, hollow fiber tubing, software, and other aspects of delivering the provision of dialysis, one aspect that has not seen any improvement in hemodialysis is improved outcomes.

The for-profit dominated dialysis industry has focussed their efforts on improving the bottom line of corporate profits but as an industry they have not advanced the technology to improve outcomes in any sensible fashion. In this regard, dialysis has not gone too far at all. Nevertheless, Dr. Kelly is speaking of the ethical dilemmas of open access to this expensive care and not the need for further technological advances.

The dialysis dilemma: urgent need vs. overtaxed system

 Today, with the door to dialysis swung wide open, Kelly argues, doctors, families and patients need a committee because someone, somehow, has to say no.

He battles with himself out loud. "I think, 'Am I some kinda Hitlerian guy, that I want to stop all these treatments?' "

Then he recalls "Scrib," Scribner himself, fearlessly insisting that uncomfortable, tough issues be aired. "I frequently say, when I'm dealing with a case, 'What would Scrib do?' " Kelly says.

"I'm trying to do the right thing — what I think is the right thing."

The study of medical ethics can be summed up simply enough as doing the right thing in difficult circumstances. I am pleased that Dr. Kelly seeks the wisdom and knowledge that "Scrib" would advise America in these trying times. However, seeking to return to "God committees" more properly called death panels from his description is not the avenue that I believe Scrib would venture with the so called "dialysis dilemma" we face today.  Dr. Christopher Blagg wrote a touching and informative tribute to his lifelong friend and colleague shortly after Dr. Scibner's untimely death in 2003. One short paragraph in this tribute speaks loudly on where I believe Scrib would want us to go:

Belding Hibbbard Scribner - Better Known as Scrib

Scrib always said he had been lucky all his life, but he was successful because of his perseverance in problem solving and his delight in tinkering with devices. He was a great teacher and leader and a generous person. His first concern was always for patients, and his other major concerns included for-profit dialysis, the future of U.S. medicine, and the future of the world.

I believe Dr. Blagg characterized best "what would Scrib do?" by noting his devotion to patients first and foremost coupled with his ability for problem solving. The great tragedy of dialysis is not that we have too many patients in need of this life saving technology,  but instead that we have spent too little time problem solving and tinkering with  any new technology. Modern technology seems to have side-stepped the dialysis industry as it ground the constant drumbeat of profiteering above and beyond the love of the patients they serve truly giving a new definition to blood money.

What would Scrib do? I believe he would tinker and problem solve with newer and improved technology and freely give that technology to medicine for no profit of his own as he did with the Scribner Shunt. Instead of profiting millions of dollars personally by his new invention, Dr. Scribner freely gave this life saving device to the entire medical community which is an ethic sadly missing today.

I don't believe that Nancy Spaeth and Bill Peckham wish to be known for an article essentially calling for death panels in the current world of re-engineering dialysis. Instead, they are filled with courage and devotion to this modern medical miracle made possible by a humble man. Where is our present day teacher and leader who shall advance the provision of dialysis in the same spirit of saving lives as both Bill and Nancy testify daily? Both knew and loved Dr. Scribner who served not only as a mentor, encourager and teacher, but as their lifelong friend. Dr. Scribner did not heed the modern admonition of doctors not getting attached to their patients, he instead embraced them with all of his heart and mind and soul.

How many nephrologists today have patients that will outlive them? Even Dr. Scribner's very first patient, Clyde Shields,  lived for over eleven years before cardiovascular disease claimed his rejuvinated life. The amazing panel of Dr. Scribner's patients have lived lives testifying of this truly remarkable invention. (here, and here)

I believe he would approach all patients with severe renal impairment with a courageous strength to save lives above all other concerns. Has dialysis gone too far? No, not at all. It has instead failed to advance far enough that the provision of dialysis is still far too excessively expensive and strangled by an industry that cares first and foremost about reaping ever enlarging corporate profits. What would Scrib do? I believe Dr. Blagg told us quite clearly in his loving tribute that he would focus on the patient tinkering with new technology and giving it all freely away to save lives. Yes, that is what Scribner would not only do, but that is what he did. 

Comments

[Bill Peckham]

"He ticks off real-life cases:

A 40-ish heroin user who injects heroin into her dialysis catheter, causing serious infections, and skips dialysis sessions. She says: "I want to dialyze. I want to take heroin."

A 60-year-old patient who has been receiving dialysis for nearly two years in a locked hospital psych unit, despite violent outbursts in which he hits his nurses. No other facility will take him.

A dying patient, unable to make decisions for herself, whose daughter, armed with a power-of-attorney, insists."

Which of these cases is a case of dialysis not going far enough?

[Peter Laird, MD]

Bill, the medical ethics paradigm of informed consent based on patient autonomy works well. For those who lack the ability to give informed consent, the legal paradigm is beneficence. In this case, if brought before a court, a judge would rule to do what is in the patient's best interest.

This is NOT an issue of entitlement as Dr. Kelly paints the door and he understands that as the chair of his ethics committee. This is changing the ethical paradigm to where outside "authorities" decide who lives or who dies based on different ethical paradigms.

Having dialysis death panels is a terrible idea and I hope that those of us on dialysis can understand why a death panel would place us all in danger.

The heroin user does not lose their right to life simply because of their lifestyle choices.

The person on the psychiatric unit already has a guardian making their medical decisions.

A dying patient unable to make decisions set aside her power to her daughter which is ethically correct, although not always equitably applied. I would much rather have the person that I have trusted my power of attorney the authority to decide than a group of strangers who have no understanding of my hopes and wishes. This is an extension of patient autonomy.

In my experience, educating the family on outcomes expected and potential patient suffering resolved every single so called ethical dilemma I encountered in nearly 20 years of medical practice. I believe we only resorted to an "ethics committee" one time and their decision was advisory only. Patient conferences with multiple disciplines resolves the majority of these cases. Withdrawal of care is a very frequent decision that is NOT reflected in this article but is common practice.

The current ethical paradigm that the RPA advocates is that of "shared decision making" where the patient is no longer the sole decision maker. I wrote a post on this previously after a similar article in the NY Times last year:

http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html

Death panels is an absurd response to a wasteful system that generates huge profits for the dialysis industry. Is that really the best we can do in 2013?

[Bill Peckham]

Well then your position isn't that dialysis needs to go farther, it's that physicians shouldn't concern themselves with being stewards of our medical resource.

Medical care, dialysis, is a limited resource, not because someone is being a despot, but because that is the nature of medicine - demand will always outstrip supply. Scribner was not one to wave off uncomfortable realities, Dr. Kelley, a Scribner protege, is continuing the practice.

[Peter Laird, MD]

Not at all Bill.

First, dialysis has not gone far enough in first of all promoting optimal dialysis as you are well aware. The more patients we get on home hemodialysis, the more money we save the system and the more people we give life back to them in full. That is optimal stewardship of limited resources. We have much work to do in this option.

Stewardship comes in many forms as you are well aware. Advancing to higher forms of dialysis such as the WAK which targets weekly Kt/V of 7 or higher is an advance that has the potential to rival transplant outcomes. We are woefully behind the rest of medicine in how far we have advanced in the last 40 years. Death panels deciding who will or who won't have access to dialysis is a step backwards, not forward at all.

Thirdly, rationing is the operative rationale of the NHS through NICE guidelines measured by QALY for each treatment. Yet, they looked a decade ago to the Kaiser model which has economies of scale and internalized referral systems in their integrated care models. Penny for penny, Kaiser got more treatment value directly to their patients than did the NHS.

http://www.bmj.com/content/327/7426/1241

Thus, if we are going to look at rationing as the operative paradigm for American medicine, it will be to our detriment. If we are going to look to death panels to guide access to dialysis, we have already lost.

I believe it is time to maximize the true potential of dialysis that has never yet been realized to date. We are consumed by a for-profit dialysis industry that has failed to advance to the full ability of this technology. Shall we, I remain optimistic that we can, but pessimistic that we will.

Lastly, surrendering our autonomous rights to self determine our own optimal medical treatment is a safeguard for all. Allowing panels and committees to determine those treatment options is quite abhorrent ethically. I believe that we are better than that. The best medical care in almost all cases is proven to be the cheapest to society as well.

[Chris Schwab]

What would Scrib do? If he could, how about give us a system like Italy's with it's lower mortality rate and spending at one-third less per patient.

Seems the place to put the energy - not committees.

[Bill Peckham]

The idea that someone with dementia should be subjected to a high dose of dialysis does not sound like patient contentedness to me and it does not sound optimal. I would not advocate for high dose dialysis for someone who is confined to a psychiatric unit. I would not expect a heroin addict to use a WAK.

Optimal dialysis can mean conservative therapy. Patient contentedness can mean conservative therapy. The issue is that no one is in the business of providing conservative therapy. People are being sold the idea of dialysis as a universal treatment for CKD5 when, I think, a clear eyed evaluation would suggest that better choice woiuld be a conservative approach. And further, I believe, absent the CKD5 profit motive more people would use a conservative therapy when faced with failed kidneys and a conservative therapy, in those cases, from the point of view of the ill, would result in a better outcome.

In Italy, more people use a conservative therapy than in the US. Does that mean that they are killing their elderly? Does that mean that there are death panels? I would say that it may well be an indication that more people are getting an appropriate treatment.

Peter, would you say that in the US there are people put on dialysis who should not be on dialysis? I would say that in your vision of a non profit US dialysis world fewer people would be using dialysis because today people are being inappropriately dialyzed, in part due to the CKD profit motive.

I don't think most readers of the article read a call for death panels, rather I think that Dr. Kelly's point is that everything pushes towards using dialysis - a powerful and entrenched business of dialysis amplifies the hopes of the ill and their families to create a system that is, to the eye of sympathetic observers, cruel. The cruelty of the system occurs not when an 84 year old dementia patient is denied daily dialysis. The cruelty occurs when that individual is subjected to dialysis at all. Where is that voice in the system? Where is the voice that pushes back against the vested interests?, the poorly informed?, the disinterested?

Dr Kelly was calling for better outcomes, for patient contentedness, for frank conversations. Responding with calls for a WAK and higher doses of dialysis misses the point.

[Bill Peckham]

My spell correct substituted "contentedness" for "centeredness" in the above post ... but really contentedness is not a bad concept to keep in mind for this discussion. Point taken, spell check, point taken.

[Peter Laird, MD]

Bill, with all due respect, I believe you have missed my point. I am not stating that all those with dementia or severe psychosis should have dialysis without any consideration of a risk benefit analysis. That is not the issue. The issue is very simply, who decides.

Placing medical decisions in the hands of a "committee" that will decide who lives or dies is a step backwards. If a patient on heroin understands the risks, benefits and alternatives and chooses to withdraw medical care, that is still his decision as long has he is competent at the time.

If a family states that they want to have a demented relative dialyzed, that is indeed a difficult situation where the risk/benefit ratio would favor not dialyzing. I have personally counseled many families in similar situations and the overwhelming majority of cases appropriate decisions were made yet not always. Often in the ICU, continuing medical care in a "futile case" ends when nature simply brings the situation to end.

Unfortunately, nephrologists are very poor communicators of informed consent as documented in several studies. Informing patients and educating them and their families is a time consuming, intensive engagement. Most families do not wish to prolong the suffering of their loved ones.

I had a patient I saw on Tuesday in my office. He was another doctors patient and this was the first time I saw him for follow up of metastatic melanoma. He had diffuse internal and cutaneous lesions. However, he remained remarkably coherent. He stated emphatically that he wished to have all medical treatments offered. I concurred even though it did indeed seem futile. He refused hospice even though I and the family believed that was in his best interest after failing all of other treatment options for metastatic melanoma.

The next time I saw this gentleman, it was the following Saturday. It happened to be my last night on call before giving up that part of my practice due to my progressive CKD. This time, he was septic and in a coma, completely unresponsive.

I discussed treatment options and prognosis with the family who I had just seen a few days before. Since he no longer could make decisions in a coma, the family accepted my prognosis that there were no effective treatment options that would prolong his life. We all concurred that treating his sepsis or any further treatment was futile. I placed this gentleman on comfort measures and he died peacefully about 12 hours later with his family present in a private room. The basis of this decision was substituted judgement from his family with durable power of attorney. This man fought a valiant fight against a terrible disease. It was not wrong at all to offer to continue that fight until he could no longer do so. That was HIS choice and I concur with what he decided.

Dealing with difficult patients is absolutely difficult. We all have difficult patients in every medical specialty. The overwhelming majority of terminally ill patients made similar decisions to fight while they could, but withdraw care when the fight was finished. All of these difficult medical decisions that I made were made either by informed consent or substituted judgement.

I never made those decisions myself. That was NOT my job. My job was to educate, inform, support and promote a discussion on prognosis, outcome, risks of treatment and potential pitfalls that could increase suffering. I don't recall more than a handful of cases where the patient or family simply couldn't make an informed decision.

On the other hand, I have seen several cases where the doctors urged withdrawal of care and were simply wrong. Thankfully the families refused to withdraw care and the patients made remarkable recoveries.

Placing life and death decisions in the hands of a committee is a very ominous change of the underlying medical ethics. There are times where patients and families need to oppose doctors recommendations. Transferring that responsibility to a committee could have many unwanted consequences.

[Peter Laird, MD]

One more point Bill, Dr. Scott Rasgon had a patient believed to have dementia while on conventional in-center dialysis. However, as soon as he started on HHD with NxStage administered with a care taker, he suddenly blossomed and "woke up." His uremia was the cause of his cognitive impairment.

Doctors are not always right. Patients at times do well with optimal dialysis in a manner that is not predicted.

What would the "committee" state about this man?

[Peter Laird, MD]

My father had dementia late in his life from Parkinson's disease. About a year before he died, he developed shortness of breath and was taken to the ER. It is unclear what happened, but he ended up intubated on a ventilator. (One nurse stated that they gave a medicine where he had an adverse reaction, however it was NEVER documented in the record. The ICU nurse stated she took report with that medicine mentioned. Nothing came of my request to investigate that allegation.)

He was on a ventilator for 12 days. After about day 10, I had to leave. The hospitalist requested that we withdraw care and give comfort measures. The pulmomary doctor was able to pull the tube and allow him to breath on his own despite a poor prognosis of accomplishing this. My father lived one more year and was able to enjoy that time.

What would a committee state about my father on day 10?

[Bill Peckham]

Again, do you think there are people in the US put on dialysis inappropriately? Meaning are there people in the US that are using dialysis that would be expected to have a better outcome forgoing dialysis?

[Peter Laird, MD]

Bill, once again, the question is not whether there are people on dialysis who should not go on dialysis since there is not expected benefit. Instead the question is who decides.

If NKC is advocating for a "committee" to make that decision and choose to withhold dialysis from those that the "committee" deems inappropriate, I would have to part company with NKC which would be a shame since they have been a shining light for optimal dialysis.

The issue is, who decides. I do not support shared decision making because it weakens patients rights of self determination and patient autonomy.

A committee making this decision is reprehensible to me.

[Bill Peckham]

I think your self righteousness is very unatractive. If you can read the article and come away thinking that Dr Kelly or anyone else in Seattle is proposing to withhold dialysis "those that the "committee" deems inappropriate" then you have failed as a reader.

If you can not accept the salience of the fact that people are being given an inappropriate treatment, then you are blind to a great deal of avoidable human suffering. Human suffering in the service of profits is not something I would wave away in the name of self determination.

[Peter Laird, MD]

With all due respect Bill, the issue is who decides. This is simply defending the concept of self determination, patient autonomy and informed consent. As you know, I have advocated for such as long as I have been writing about dialysis issues.

The issue is who decides. If it is a committee, then patient autonomy and self determination is dead and we no longer have informed consent. Informed consent is predicated on educating the patient or guardian on the risks, benefits and alternatives of treatment.

That is part of the longstanding legal fiduciary requirement of a physician and is the standard of care today. It has nothing whatsoever to do with alleged self righteousness Bill. This is instead the law of the land and the legal duty of all physicians. Here is an excellent overview of that legal duty for physicians:

http://legalstuff.kaiserpapers.org/informedconsent.html

In my time in medicine, I withdrew treatment on many patients but it was not my decision. I respected their right to self determine what was best in their situation between them and their families. I understand precisely what Dr. Kelly is recommending with a committee to make these decisions. I disagree strongly with that approach. Informed consent is one of the most important patient's rights issues we have.

http://www.emedicinehealth.com/patient_rights/article_em.htm

[Peter Laird, MD]

Lastly, if the committee were to assume decision making power against the will of patients or guardians, that would not be a medical ethics based on patient autonomy with informed consent, nor would it even by shared decision making.

It would not even be paternalism since the beneficiary in this case would not be the patient, but instead the institution. I truly do not believe that Seattle NKC has the legal or ethical authority to convene such a committee under current law which continues to uphold the patients rights to informed consent and the physicians duty to respect patient autonomy should such a committee be anything other than advisory in nature. Current ethics committees are advisory in nature as constituted at this time.

[Chris Schwab]

If death sentences have to be handed out, I prefer them to be handed out by a judge and jury - not God squads. I've seen how this can be a slippery slope and recall having to argue with a nurse who felt she had the right to dump patients she found disgusting - last I looked disgusting wasn't a capital crime.

I was asked what should be done if some pervert was whispering unmentionable things to my daughter while she received treatment. I would have expected the nurse to isolate the offender, call the police if appropriate, and the nurse would have to pull my daughter's thumb out of the perpetrator's eye - somebody obviously didn't know my daughter.