HemoDoc, From Doctor to Patient

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. 

Pushing Organ Procurement Ethics Over the Slippery Slope

By Peter Laird, MD

The dead donor rule serves organ donors protecting those that can no longer speak for themselves. Tragic cases of death by organ donation are not talked about especially in the renal community yet they are documented and continue to occur in large part due to the lack of uniform brain death criteria throughout the US. Though fortunately rare in occurrence, anyone that has seen the NBC news report on the Zack Dunlap case should seek legislation assuring that no one would ever die as a result of death by organ donation. (here)

Unfortunately, coupled with paradoxical outrage at a Wall Street Journal article documenting the rare cases of death by organ donation, medical ethicists recently turned the discussion to procuring organs prior to the death of the donor. Although there were some ethicists who spoke against this newly proposed donation policy, many supported this new medical ethics paradigm.

The Case for Kidney Donation Before End-of-Life Care

Donation after cardiac death (DCD) is associated with many problems, including ischemic injury, high rates of delayed allograft function, and frequent organ discard. Furthermore, many potential DCD donors fail to progress to asystole in a manner that would enable safe organ transplantation and no organs are recovered. DCD protocols are based upon the principle that the donor must be declared dead prior to organ recovery. A new protocol is proposed whereby after a donor family agrees to withdrawal of life-sustaining treatments, premortem nephrectomy is performed in advance of end-of-life management. Since nephrectomy should not cause the donor's death, this approach satisfies the dead donor rule. The donor family's wishes are best met by organ donation, successful outcomes for the recipients, and a dignified death for the deceased. This proposal improves the likelihood of achieving these objectives.

As a renal disease sufferer, I initially considered pre-emptive renal transplant with donation from my wife. However, after considering both my prior history of cancer and risk of cancer recurrence after renal transplant and the risks entailed for my wife, I declined to pursue that option and then focused on optimal dialysis considerations. After all, renal disease is my disease and my responsibility. I do regret the loss of the kidneys that God granted to me, but I do not believe I have any right to another persons kidney whether dead or alive. It is a gift, it is not a right of any person with renal disease. 

It appears to me that in many ways, the renal community has transformed renal donation into a right over the last two decades. Presumed consent at its heart gives ownership of vital organs by the state for all those that don't opt out of this system utilized in Spain and other nations. While I value the gift of organ donation, I still cherish my civil liberties and I would hope that the demand for renal donation would never preclude our right to liberty and self determination. Once again, it is my disease, not someone else who is a complete stranger to me who has their own right to life, liberty and the pursuit of happiness.  In many ways, I personally would much rather die from my renal disease than see my renal disease used as a means of of encroaching another man's civil liberties.

I fear that I am in the minority opinion among my friends and colleagues in the renal community. It appears that just about any means of increasing renal donation no matter what the ethical implications of those policies and procedures is gladly welcomed by the renal community at large. Presumed consent, abandonment of the dead donor rule, donation by cardiac death and now kidney donation before end of life care infringe civil liberties for society in general and push the organ procurement ethical framework over the slippery slope endangering individual societal rights.

While I am sure that I will likely be in the minority opinion on this issue among the renal community, I must still question whether there are limits we should not cross in providing all available ethical renal donations? Changing the definition of what is ethical is a dangerous slippery slope that poses risks to society at large. Should we not who are most at risk in this society from our own renal disease support the protection of others who can no longer speak for themselves in their own tragic circumstances and forgo our greed for their organs by ever changing medical ethics?

American society decades ago saw the dangers of euthanizing anencephalic children and harvesting their organs recognizing the sanctity of person-hood in these children doomed to a sure death shortly after birth. I suspect our current modern society will re-evaluate that decision as well one day. I don't see these changes in our medical ethics as a positive change in any manner. I believe it shows a callous disregard of our human condition and respect and dignity for the individual and life in general.

We in the renal community must consider that same callous disregard for individual lives could in the end be the same sort of justification given to terminate treatment of those with renal disease as well. We are on the high price, low benefit scale according to many medical ethicists with some questioning how we perform dialysis in America. (here)  The renal community needs to be very careful what we ask for as there are always consequences of seemingly small decisions. 

Donation prior to death should never be the standard for organ procurement. I would hope that the renal community would understand this better than the general population since it was the respect for individual life that spurred the 1973 ESRD program funding in the first place. Losing this fundamental ethical paradigm could have untoward outcomes on continued ESRD funding in the future. The demand for kidneys today should not subvert the ethical foundations that secure our future especially in a time of limited resources.

I personally call upon the renal community to stand up and firmly disengage from the pursuit of renal donors at any cost through alteration of long held ethical paradigms. I would hope that the renal community will instead reaffirm the dead donor rule and set limits on the ethics of organ procurement. Respect for all life begins by recognizing the importance of the individual no matter what circumstances they encounter. Is that not the story of the ESRD program in 1973? If we won't stand up for those at risk of death from trauma and other illnesses, who will stand up for us in our time of need that the future shall surely bring.

To Spend or Not to Spend: That is the Question

By Peter Laird, MD

During the course of my career in internal medicine, I have observed the changing of the gaurd from the days of indepth investigation of all symptoms and abnormalities to the new ethics of today that calls for limited investigations and more focused treatments. Many of the new physicians growing up under this new fiscal restraint truncate their considerations of the causes of these symptoms in algorithmic precision. For the majority of patients, this approach will work since what is common is common. However, algorithms fail when patients presents with illnesses not considered within these cook book medical recipes.

The only antidote for those patients is old fashioned, Oslerian methods of investigation of clinical inquiry and focus on the patient as a clinician-scholar making close observations and developing clinical hypothesis from these observations.  There are no short cuts nor cook book medical rhymes that can replace the trained clinician applying the Oslerian medical precepts. Sadly, with the high tech, specialized clinical practice of today, the art of medicine is often overlooked often to the detriment of our patients.

The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head. Sir William Osler

What is lacking today in many ways is the connection between doctor and patient that technology and fiscal policies dictate to the young clinicians beginning their practices. I observed many new physicians more concerned about getting home by 5:00 than taking the time to observe, collect data, hypothesize and produce a combination of effective diagnostic testing and treatment alternatives. And at the same time instructed the patient to feel comfortable engaging these plans.

Such an approach is not only time consuming but at times expensive. An in depth analysis always generates more questions needed answering than the cook book algorithmic methods of today that usually covers the top 90% of cases, but over looks the 10% that are rare and uncommon. Once again, the new methods work in a cost containing society but fail in the real world of individual patients.

Interestingly, a recent study supports the concepts of the Oslerian method of medicine more so than this new medical ethics focused on cost containment first and foremost. The common denominator speculated by one commentator was that of the pursuit of academic excellence at the bedside in teaching hospitals. The teacher-clinician model of medicine exemplifies the Oslerian method.

Best Care may Be at Hospitals That Spend Most

"Higher-spending hospitals differed in many ways, such as greater use of evidence-based care, skilled nursing and critical care staff, more intensive inpatient specialist services, and high technology, all of which are more expensive," they wrote.

In an accompanying editorial, Karen Joynt, MD, MPH, and Ashish Jha, MD, MPH, of the Harvard School of Public Health in Boston, added that the nature of a hospital's mission could also influence outcomes.

"Features that make a hospital high cost, such as a teaching mission or research mission, may actually be related to better outcomes," they wrote. "Thus, it is possible that it was not spending per se that improved outcomes but rather the teaching intensity or academic expertise more common at high-cost hospitals."

The idealistic aspects of medical training quickly fall to the constraints of time and limited resources for the majority of physicians in daily practice. During my training, one of the aphorisms I heard many times over was the the best medicine in the long run was the cheapest. Preventing complications and further hospital admissions and associated treatment costs is best approached by gettting the diagnosis and treatment alternatives correct the first time around.

I am at times appalled when witnessing the cost containing methods of home dialysis programs that skimp on medically needed supplies such as giving me one roll of tape for an entire month while over looking the tremendous cost savings of a home dialysis program after higher upfront costs are considered. The penney wise and pound foolish approach to medical care in America appears to be the new mantra in the health care industry, and especially for dialysis patients.  Early in my career, I would ponder the consequences of the cost of the evaluation on my own ratings, but I soon put that aside and focused only on the patient. Needless to say, many times over I was less than popular with the bean counters.

The intensity and thoroughness of evaluations and therapies are the most important aspect of high quality medical care as taught by Sir William Osler over a hundred years ago. It all begins with a doctor that can listen and observe. It is time to return to the rudimentary traditions that gave us the most effective health care system ever known.  There is a time to spend and prevent and repair  instead of dealing with the inevitable costs of failing to seek the highest care for each patient that presents to a doctors office. In the end, the best care is the cheapest.

Death by Organ Donation? - Opening Pandora's Box

By Peter Laird, MD

A friend recently sent me an article from the Wall Street Journal about organ donation and allegedly losing autonomous rights by signing an organ donor card. Initially, my first impression fell in line with the majority of comments to this article that this could damage the fragile organ donation system we have in America. However, using this commentary as a basis for further investigation, there is much in the commentary that should become part of the organ donor discussion of today:

What You Lose When You Sign That Donor Card

Becoming an organ donor seems like a win-win situation. Some 3.3 people on the transplant waiting list will have their lives extended by your gift (3.3 is the average yield of solid organs per donor). You're a hero, and at no real cost, apparently.

But what are you giving up when you check the donor box on your license? Your organs, of course—but much more. You're also giving up your right to informed consent. Doctors don't have to tell you or your relatives what they will do to your body during an organ harvest operation because you'll be dead, with no legal rights.

The most interesting and controversial evidence noted in this commentary is a reference to a medical report from 1999 by an anesthesiologist that records three instances of failure of the brain death criteria including one "donor" who had his organs harvested even though he had spontaneous respirations and movement at the time of organ removal contrary to accepted brain death criteria. (here) Even more troublesome are the collections of patients who have been declared brain dead by accepted criteria to subsequently survive and in some cases recover completely. (here)

 

Pronounced dead, man takes 'miraculous' turn

Some four hours after doctors declared Zack dead, a nurse began to remove tubes from Dunlap. His cousins, Dan and Christy Coffin, both of whom are nurses, were also in the room. Something about Zack’s appearance made them think that he wasn’t as dead as the doctors said. On a hunch, Dan pulled out his bone-handled pocket knife and ran the blade up the sole of one of Zack’s feet.

‘Our son is still alive!’ 
The foot yanked away, but the other nurse said it was a reflex action. So Dan Coffin then dug a fingernail under one of Zack’s nails. Zack yanked his arm away and across his body, and that, the other nurse agreed, wasn’t a reflex action. It was a sign of life.

“We went from the lowest possible moment to, ‘Oh, my gosh, our son is still alive!’ ” said his mother. “That was the most miraculous feeling. We had gone from the lowest possible emotion that a parent could feel to the top of the mountains again. We were still very guarded, because we weren’t sure what his prognosis would be, but just to hear the words that he was back with us is something we’ll remember forever.”

Doctors warned the family that Zack could have profound brain damage that would prevent his leading anything resembling an active life. But within five days he opened his eyes, and 48 days after the accident, he walked out of a rehab center and returned home, where the entire town gave him a hero’s welcome.

He’s working to regain his memories and to control his emotions, and he’d like to go back to his job as a warehouse worker. He also wants to get his driver’s license back.

“I’ve been wanting to drive [from] about the day I was back from rehab,” he said.

At Morales’ request, Zack reached in the pocket of his jeans and pulled out the pocket knife his cousin had used to prove he was still alive. Dan Coffin had given it to him as a gift and a memento.

“It makes me thankful that they didn’t give up,” Zack said, turning the knife over in his hand. “Don’t let the good die young.”

Shortly thereafter, he showed signs of breathing and brain activity. A few months later, this young man sat in my office with his father as they related the story. The strangest aspect of the entire story was his statement that he had his death certificate at home with him. He made a full and total recovery with no deficits whatsoever and returned to military duty as a computer specialist.

A second case I was involved with as a resident in training for my internal medicine career was that of a young woman who had an anoxic event (lack of oxygen) of unknown duration. I remember becoming involved with the case as a team of doctors tried to persuade the family that she was brain dead and to withdraw care. They refused and continued a vigil of prayer and support continuously. A couple of days later, the nurses began to tell us that the patient was moving spontaneously yet none of the physicians ever observed that in our brief visits. Things changed when the patient woke up and began breathing spontaneously without the ventilator.

One of the most poignant encounters I have ever had with a patient occurred about six months later when this same young woman walked back into the intensive care unit to thank all of us involved in her care. She did have a permanent brain injury resulting in complete blindness, but before me was the most grateful patient I have perhaps ever encountered in my entire medical career with expressed joy for her second lease on life even with the blindness. I am not sure how much her family related to her on the urgent meetings to withdraw care by the same team of doctors she was now thanking. It is a moment I shall never forget considering how close she had been to death by organ donation.

The demand for well preserved and intact organs for those also in desperate need is well documented with available organs only a fraction of those on the waiting list. Nevertheless, as great as the benefits of cadaveric donation, over forty years after the Harvard criteria for brain death came into existence, protocols vary from hospital to hospital and state to state. In the last decade, to accommodate this growing demand for organs, standards have been loosened to increase available donors with extended donor criteria and those patients with cardiac deaths instead of brain death. Just one case of mistaken brain death diagnosis should give us all pause to consider not only our own loved ones in need of a new kidney, heart, lung or liver, but to hold fast that we would never see even one case of death by organ donation. 

In the zeal to secure higher quantities of viable organs, we must first remember the dictum to do no harm. Fortunately, the cases of incorrect diagnosis of brain death are quite rare, but at the risk of making any error, the certainty of brain death must be considered an area where caution is in order. Anyone that listens to Zach's testimony of remembering being declared brain dead I am sure will consider that the Wall Street Journal commentary is an important dialogue to continue despite the fact it will most certainly be an unpopular and controversial endeavor in the renal community. The integrity of the organ procural system must be maintained at the highest levels of ethical donation, otherwise we risk losing the support of the community, further increasing the waiting times for transplant and the inevitable death toll that will likewise follow.

Confessions of a Nephrologist: Is Withholding Information Part of the Art of Medicine?

By Peter Laird, MD

As a practicing internal medicine specialist, applying the legal requirement of informed consent at times appeared to be an act of absurdity with many common ailments. I clearly documented and performed the legally required informed consent many times over for treatments as mundane as ear infections and other illnesses that often times are self limited and would resolve without any treatment at all rendered. Comfort of the patient at times became the motivating force behind these treatments. For myself and my colleagues, the complaint of negligent care by tort law most often came in the failure of proper informed consent or lack of informed consent. The legal basis of informed consent is summarized well in an essay on this subject:

An Empirical Analysis of the Medical Informed Consent Doctrine: Search for a "Standard" of Disclosure

The prototypical informed consent case arises when a patient suffers an injurious, nonnegligently-caused outcome of a diagnostic or therapeutic medical procedure.20 An outcome that is nonnegligently caused is one which arises in a certain percentage of cases regardless of the care of the physician, due to physiological differences from the norm or particular susceptibilities of a patient, or one that arises from an act or failure to act of the physician but such act or failure to act is within the standard of care.21 In order to recover damages for that outcome, the plaintiff must establish the elements of negligence, that: (1) the physician had a duty to disclose particular information to the patient; (2) disclosure did not occur; (3) (a) but for the nondisclosure, the tendered procedure would have been refused, and (b) that the tendered procedure was the cause in fact of plaintiff's injury; and (4) the plaintiff suffered a compensable injury.22

The legal requirement is that all medical treatments must be understood and accepted by the patient or the legal guardian and consent to each medical intervention. The risks, benefits and alternative treatments must be explained and in addition, the physician must ascertain that the patient understood these issues. I have read and heard my colleagues in the various specialties spell out very specific risks and benefits that were then duly documented in the medical record, many in precise and at times graphic detail. Many surgical specialists have gone so far as to video tape standardized informed consents for routine procedures such as elective hip replacements and having the patient attend pre-surgical patient education classes. In these classes, all conceivable outcomes and expectations are listed with documentation of pertinent studies when indicated.

Since entering the world of American style dialysis, the first culture shock I encountered was the number of decisions made by the medical team with little clear and precise informed consent such as sodium modeling or ultrafiltration rates for instance. Because the legal standard for informed consent is a community standard, all that a nephrologist must do to meet that requirement is to do what the average nephrologist would discuss and advise. Sadly, the record for the American nephrology community is greatly lacking compared to all other informed consent procedures I have encountered in my professional life as a physician. Several surveys have documented this unique American nephrology failing:

Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis

RESULTS: Substantial proportions of patients were unaware of their kidney disease (36%) or were not seeing a nephrologist (36%) until <4 months before first dialysis. The presentation of treatment options was delayed (48% either after or < 1 month before the first dialysis). The majority of ESRD patients were not presented with chronic peritoneal dialysis, home hemodialysis, or renal transplantation as options (66%, 88%, and 74%, respectively). Using multivariate analyses, variables significantly associated with selection of chronic peritoneal dialysis as dialysis modality were the probability of chronic peritoneal dialysis being presented as a treatment option and the time spent on patient education.

CONCLUSION: An incomplete presentation of treatment options is an important reason for under-utilization of home dialysis therapies and probably delays access to transplantation. Improvements in and reimbursement for pre-ESRD education could provide an equal and timely access for all medically suitable patients to various RRTs.

Many patients falsely enter into the dialysis unit believing that conventional in-center dialysis will restore and extend their lives significantly. In my opinion, the American nephrologist fails miserably in the standards of informed consent that I practiced and observed in all aspects of my medical career. Similar studies subsequent to Mehotra's study reveals no improvement in this situation. Sadly, one of the rare randomized and controlled dialysis trials is essentially ignored today despite a significant finding of increased self care dialysis choices for those with improved informed consent:

The impact of education on chronic kidney disease pateints' plans to initiate dialysis with self-care dialysis: a randomized trial

Methods Seventy patients with CKD who were receiving care in a multidisciplinary predialysis clinic were randomized to receive either (1) a two-phase patient-centered educational intervention (phase 1 included educational booklets and a 15-minute video on self-care dialysis; phase 2 included a 90-minute small group interactive educational session on self-care dialysis) in addition to their regular multidisciplinary care, or (2) ongoing standard care and education in the multidisciplinary predialysis clinic. The primary outcome was patients' intention to initiate dialysis with self-care dialysis, assessed by questionnaire.

Results Thirty-five patients were randomized to standard care; 34 completed the study. Thirty-five patients were randomized to the educational intervention; 30 completed phase 1 and 28 completed phase 2. By study end, significantly more patients in the intervention group (82.1%) intended to start dialysis with self-care dialysis compared with the standard care group (50%, P = 0.015). This difference persisted after controlling for the small baseline differences among patients in the two study groups (P = 0.004).

Conclusion A two-phase educational intervention can increase the proportion of patients who intend to initiate dialysis with self-care dialysis.

Despite the positive findings of a randomized and controlled trial increasing patients choice of self care dialysis and the dismal record the American nephrologist has accomplished in the area of informed consent, the intractable attitudes among nephrologists has not budged. I have wondered for several years now how this dichotomy between American nephrology and the other specialties is so diverse and uniformly ignored by this specialty.  I have been puzzled even more so is the complete lack of accountability for ignoring such a fundamental fiduciary physician responsibility with few if any consequences for this failure. After all, informed consent is required by law for dialysis patients:

§ 405.2138   Condition: Patients' rights and responsibilities.

The governing body of the ESRD facility adopts written policies regarding the rights and responsibilities of patients and, through the chief executive officer, is responsible for development of, and adherence to, procedures implementing such policies. These policies and procedures are made available to patients and any guardians, next of kin, sponsoring agency(ies), representative payees (selected pursuant to section 205(j) of the Social Security Act and subpart Q of 20 CFR part 404), and to the public. The staff of the facility is trained and involved in the execution of such policies and procedures. The patients' rights policies and procedures ensure at least the following:

(a) Standard: informed patients. All patients in the facility:

(1) Are fully informed of these rights and responsibilities, and of all rules and regulations governing patient conduct and responsibilities;

(2) Are fully informed of services available in the facility and of related charges including any charges for services not covered under title XVIII of the Social Security Act;

(3) Are fully informed by a physician of their medical condition unless medically contraindicated (as documented in their medical records);

(4) Are fully informed regarding the facility's reuse of dialysis supplies, including hemodialyzers. If printed materials such as brochures are utilized to describe a facility and its services, they must contain a statement with respect to reuse; and

(5) Are fully informed regarding their suitability for transplantation and home dialysis.

Once again, for each specialty, it is a community standard set by the specialists themselves of what an average nephrologist believes his patients need to hear. For the American nephrologist, CMS spells out in great detail what is required. It appears that there may be more philosophical barriers to true informed consent amongst the American nephrology community as evidenced by a posting by Dr. Ajay Singh on his The Kidney Doctor blog:

Dialysis Unplugged: Compassionate Withholding of Information, Damned if You Do, Damned if You Don't

I can tell you right off the bat that I do not routinely tell my patients starting dialysis that on average they have a 20% chance of dying in the first year of starting dialysis. Nor, for that matter, do I tell my 70 year stage 5 CKD patient, who I am preparing for  initiation of dialysis, that she or he has, on average, 2 to 3 years longevity of dialysis. Of course I want to be truthful to my dialysis patients, but averages are misleading, and ESRD is not a terminal disease. Moreover, two or three additional years of life aren’t something to ignore. . . 

Here’s where I disagree. Linda Emanuel is taking what is often a complex situation and simplifying it. Worse still, she is arguing that deliberate withholding of information is unethical.  Of course we all agree that we need to provide a realistic assessment of prognosis to our patient’s and their families. However, there is a fine line between “realistic assessment” and “scaring people”. This is where knowing the patient and their family and applying the Oslerian “the art of medicine” comes into play. Compassion is important (read this story to know why). For example, I don’t tell all my dialysis patient’s that their prognosis is worse than if they had some forms of cancer. It might be on average, but it is certainly not true for everyone. Dr. Paul Beeson once said: “Our profession, after all, deals partly with guess work; we do not deal in absolutes.”

I am frankly appalled at the open disregard by a prominent American nephrologist in not explaining the most basic aspect of ESRD, that of mortality with conventional in-center dialysis care to each and every competent patient. I find this completely at odds with my entire medical training and practice and that of my colleagues in high risk specialties where adverse outcomes are common.  The most important information that a patient and their family needs is exactly what sort of illness and outcomes they are dealing with at the onset of treatment. The issue of informed consent becomes even more apparent with the publication of intensive dialysis outcomes in JASN today showing significant survival benefits for these renal replacement therapy options. For patients that never hear of the grave risk of death from ESRD, what will motivate patients to seek treatment options that entail sacrifice and great personal effort to accomplish?

In my opinion, the slothful approach to informed consent amongst the American nephrology community is at great odds with many recent studies proving the benefits of alternative dialysis treatment options. If the American dialysis hegemony will ever end, it must first start with a paradigm shift in the attitudes of American nephrologists towards their patients and incorporate respect for patient autonomy into their daily practice much more so than is evident today. It is my opinion and that of available evidence based medical studies on informed consent in the American dialysis industry that change is needed.  It must begin one nephrologist at a time. After all, if the American nephrologist is too ashamed to relate mortality to dialysis patients, they may wish to consider modalities that improve this dismal result with each and every competent patient. After all, it is the law.

The New Renal Transplant Allocation System: No Elderly Need Apply

By Peter Laird, MD

The current system for allocation of available cadaveric kidneys for transplant is undergoing intensive revisions by the Organ Procurement and Transplantation Network (OPTN). Under consideration is how to match the best available donated kidneys with the patients who have the greatest expectation of longevity. Early, OPTN considered using age matching as one criteria to allocate kidneys, but after legal review, the committee felt there could be legal challenges based on the Age Discrimination Act. The results of such an approach could have an effect on the number of patients over the age of sixty five that would be eligible of for the transplant list:

OPTN/UNOS Kidney Transplantation Committee, Report to the Board of Directors, November 2011 

The Committee then examined results from a prior simulation run that did not include age matching (Exhibit A).  Run 37 used the current kidney allocation rules with a few modifications (use of dialysis;time instead of waiting time and inclusion of the A2/A2B rules).  Run 37 also included longevity;matching for the 20% longest lived kidneys (as approximated by kidney donor profile index [KDPI]);which were allocated first to the 20% of candidates with the longest potential survival (as approximated by estimated post transplant survival [EPTS]).

The results from Run 37 indicate that the distributions would be similar to those currently observed for race/ethnicity, degree of HLA mismatch, and blood group. There was a slight decline observed in the proportion of transplants for highly sensitized candidates. Similar to other proposed approaches, the proportion of transplants for older candidates also declined, though not as substantially. A representative from the Ethics Committee remarked that this decline is ethically acceptable as everyone who is old had a chance to be young, but not everyone who is young will have the chance to be old.

Several respected transplant nephrologists and surgeons have spoken in opposition of the proposed allocation system including Dr. Lainie Friedman Ross and Dr. Benjamin Hippen:

How Not to Assign Kidneys

Giving more organs to young recipients would also come at the expense of “older” recipients, which in this context can mean 50 to 64. (Only a tiny fraction of all kidneys go to recipients older than 70.) Since older candidates on the waiting list are less likely to live long enough to receive a kidney, making them less eligible for transplants will probably result in more deaths on the list, and more pressure on available living donors to donate to older candidates.

The new proposed renal allocation system comes at at time when some investigators are reevaluating whether age alone is a factor that precludes benefit. A recent study out of Johns Hopkins found in carefully selected patients over the age of sixty-five that there were significant benefits. With over half of the ESRD population in this category, few are aware that this new policy could reduce the chance of even having a living donor transplant by not being referred for evaluation in the first place:

Thousands of Seniors Lack Access to Lifesaving Organs, Despite Survival Benefit

The Hopkins investigators estimate that between 1999 and 2006, roughly 9,000 adults over 65 would have been "excellent" transplant candidates and approximately 40,000 more older adults would have been "good" candidates for new kidneys. None, however, were given the chance.

"Doctors routinely believe and tell older people they are not good candidates for kidney transplant, but many of them are if they are carefully selected and if factors that really predict outcomes are fully accounted for," says transplant surgeon Dorry L. Segev, M.D., Ph.D., an associate professor of surgery at the Johns Hopkins University School of Medicine and leader of the study being published in the January issue of theJournal of the American Geriatric Society. "Many older adults can enjoy excellent transplant outcomes in this day and age," he says, and should "be given consideration for this lifesaving treatment."

Since the initial public outcry when the new allocation system first came to attention, little is heard any longer on the status of this proposal. For half of the ESRD population in the elderly category, geriatric patients may wish to become more involved. After all, even when patients have health insurance and a willing donor, recent news confirms that there is no guarantee that the patient will be accepted for transplant. In a time of organ shortages, short sighted ethical perturbations will not help the system or protect those that they allegedly are designed to protect. It is time to bring this discussion back to the public where it belongs.

Walking in the Shoes of Your Patients

By Peter Laird, MD

I came across two recent articles on experiencing direct patient care to raise the level of empathy among health care professionals. The first article in MedScape is written by a practicing physician who had several suggestions for medical students to experience before they ever laid hands on any patients:

What Should Medical Students Experience Before They are Allowed to Touch Patients?

The object of this exercise would be to help students develop the sensitivity and compassion appropriate to carrying for patients well. So I'll start of the list of what med students should be required to experience, both men and women, before they are allowed to go near patients, in no particular order: 

1. Placement of an NG tube. 

2. Rectal exam done in the same bent-over position that we ask men to assume for their prostate exams, for both men and women. 

3. Pelvic exam done in the lithotomy position for both men and women. 

4. Venipuncture with drawing of at least 8 tubes of blood. 

5. Upper and lower GI. 

6. BG monitoring at least twice daily for, say, a month. 

7. Urinary catheterization. 

8. Hospital stay of at least 3-4 days as a "mystery patient" with a contrived diagnosis, including access to hospital food only, strict I&O, daily AM fasting labs, multiple dosing of placebos, ordered with specifications around mealtimes, sleep etc. At least one day of strict bedrest. This experience must take place in a teaching hospital under the care of a team not alerted to the identity of the patient. 

I must confess I don't know what medical students experience in school any longer, but we used each other to practice several of these tasks such as NG tubes and blood draws.  It was rather comical to see an NG tube coming up and out the mouth on the first nervous attempts instead of going correctly down into the stomach. Unfortunately, throughout my training there were many examples of fellow students with serious illnesses. I was one of those in medical school who suffered such an example with a testicular cancer in my third year of medical school. After I healed from the operation, I underwent daily radiation treatments and then went to my OB/GYN rotation seeing "real" patients right after the radiation. I learned to appreciate Lomotil which saw me through those three weeks.

Dr Belding Scribner often stated to be a good physician, you first must be a patient. Being able to identify with individual fears and suffering tempers the grandiosity also associated with being a doctor, especially in the early years of a career. However, other than venopuncture and NG tube placement which we did on each other, I could not recommend the other procedures on the this list because they are associated with side effects and risks of complications that precludes this sort of unnecessary torment. 

When I was nineteen, I worked as an orderly covering the shifts for three other orderlies on their days off. That meant I worked all three different shifts each week since the other three orderlies all had set work times. During the night shift, I worked in the Emergency Room and the majority of the time, I did the initial triage evaluations on patients seen during those late hours. I would take vitals and briefly interview the patient about their symptoms and concerns. I would then wake up the doctor asleep in his call room and stay and assist him during his examination. The most notable patients were trauma patients who came in covered in blood. It was my job to clean up their bloody wounds before the doctor placed sutures.

Invariably, every single time I saw someone in pain and bleeding, I had a visceral reaction with chills running up and down my spine. Fortunately, I have never experienced that type of trauma and I hope to never in the future, but I didn't need to experience directly those injuries to understand the impact it was having on the patients laying before me.  This reaction never prevented me from doing what I needed to do, but I would hope most people are uncomfortable when they see other people in pain and suffering. When we graduated, my medical school class chose the Oath of Maimonides instead of th Hippocratic Oath. Today, I believe it expresses well the necessary temperament needed of physicians to view patients as fellow creatures in need:

The Oath of Maimonides

The eternal providence has appointed me to watch over the life and health of Thy creatures. May the love for my art actuate me at all time; may neither avarice nor miserliness, nor thirst for glory or for a great reputation engage my mind; for the enemies of truth and philanthropy could easily decieve me and make me forgetful of my lofty aim of doing good to Thy children.

May I never see in the patient anything but a fellow creature in pain.

Grant me the strength, time and opportunity always to correct what I have aquired, always to extendits domain; for knowledge is immense and the spirit of man can extend indefintely to enrich itself daily with new requirements.

Today he can discover his errors of yesterday and tomorrow he can obtain a new light on what he thinks himself sure of today. Oh, God, Thou has appointed me to watch over the life and death of Thy creatures; here am I ready for my vocation and now I turn unto my calling.

The second example of sampling the life of their patients was among renal dietitians who took their own advice for five days by experiencing a renal diet.

The "Walk the Talk" challenge at St. Michael's Hospital

It's my last day on the renal diet....I MADE IT!! (barely!)  It was not an easy week...and I have to admit that I cheated today and had whole wheat bread.  My colon was begging me for some fibre!   

I also went out for dinner last night for a friend's birthday, and the birthday girl decided on Chinese food.  Since I have been depriving myself of fluid and feel quite dehydrated, I had an extremely difficult time controlling my thirst after our salt-laden Asian meal.  Actually, I went home must have drank a litre of water!  I'm positive that if I were a dialysis patient, I would be fluid overloaded right now!

This week has been an eye-opener.  My colleagues and I realized just how difficult it is to change life-long habits, and we only changed one small aspect of our lives.  Our patients on dialysis have so many more changes they have to face - being on a machine 4 times a week, taking an abundance of medications at different times of the day, limiting their favourite foods, not travelling as they please, not being able to work....the list could go on and on. 

I do applaud those that participated in this renal diet challenge, but as some commentators on IHD noted, the renal diet as restrictive as it is still affords a broad enough selection to eat well. I tell people that I do have a restriced diet, but I am not deprived especially since starting on daily home hemodialysis. I eat oranges, bananas, spaghetti, potatoes, tomatoes, ice cream  and pizza, all in moderation of course.  Sodium is the worst contender along with phosphate preservatives and additives. While it is difficult to find food items acceptable to a renal diet, anyone that has tried Zach's famous chunky chile would tell the renal diet challenge folks to lighten up and use their imaginations a bit more to make the renal diet much more palatable. (here)

When I first started on dialysis, my renal dietitian recommended a book called: Cooking for David. The devoted wife of a dialysis patient spent years developing and cataloging renal friendly foods that her husband enjoyed. My wife and tried several of the recipes and I used to enjoy her Pita Pizza recipe on a regular basis. My life was restored from the first day of home hemodialysis training with potatoes, oranges and bananas for the first time in two years.

Yes, by all means consider methods of teaching health care professional empathy for their patients, but I would avoid first of all avoid advocating for any test that care potential risks which eliminates nearly all of the list above and secondly, use a bit of imagination to not only survive a renal diet, but also to thrive. After all, day and day out, the renal diet is one of the most important aspects of remaining healthy on dialysis and life is too short to not enjoy a pot of spaghetti from time to time. All things in moderation gives me little I can't eat if only to get what I call a taste of taste. We are all one of God's creatures and healthy or not, all of us have had our share of pain and suffering. Perhaps that is the prerequisite needed to be a doctor or other health care professional.  Yes, Dr. Scribner is absolutely correct that to be a good doctor you need to be a patient first, but short of that, perhaps all that is needed is to simply have a heart.

First Do no Harm: The Living Renal Donor Dilemma - Dr. Brenda Mayne's Story

By Peter Laird, MD

There is nothing more tragic than outcomes that happen to you personally. Doctors are fond of statistics when discussing the risks and benefits of any given procedure, but statistic fail to take into account the fact that when an adverse outcome does occur, it is an 100% occurrence for that individual. Renal transplantation is universally heralded as the best option for renal replacement therapy for those with ESRD especially with a preemptive transplant from a living donor. Sadly, the donors story is seldom followed more than a few months.  There is no registry to follow these patients to know the outcome of that donation. Dr. Brenda Mayne placed a comment on my post: First Do no Harm: The Living Renal Donor Dilemma, where among other things, I reported on the very first renal transplant that succeeded in this nation with the Herrick twins. I would urge all to consider not only her personal story, but to also note an interesting historical fact about the first transplant donor that I was completely unaware.

As a living donor 8 months out from surgery, I am horrified at my own lab values (GFR = 34) and what I see as my transplant center's blase assumption that I would be fine despite
predonation eGFR = 67. As a 49 year-old woman, I am now facing a lifetime of kidney disease. During screening, transplant staff repeatedly asked if I was clear on how serious the donation would be, but when I asked exactly what it would mean for my health every staff member told me that living donors - particularly white women like myself - had no difficulties. No one shared my questionable labs with me - or with my recipient who now has a lower GFR than she had prior to transplantation.

The article above describes Ronald Herrick, the first living kidney donor, as having an "exceptional" life; it fails to mention that Herrick spent the last decade of his life in ESRD and on dialysis. In reporting his death from cardiac failure, the connection between kidney donation, kidney disease, and cardiac disease is not mentioned.

Until Nephrologists step up as a profession and demand strict criteria for living donors, living donation is dangerous and unethical. Criteria should include screening by outside nephrologists; my screening was done by the nephrologist who follows the Transplant Center's recipients. Criteria should include an estimate of the amount of renal capacity expected to be lost over the donor's lifetime with criteria adjusted so that younger donors are protected. Criteria must use realistic expectations for the donor's ability to hyperfiltrate/hypertrophy. My center told me, after surgery, that they expected me to compensate 100% - at age 49! Criteria must also include assessment of the other organ systems affected; nephrologists can inform both professionals (surgeons) and patients of the multiplicity of ways the kidneys affect the body - rather than simply producing urine. You have more patients than you can care for as a profession. Protect us, the living donors, so that there are not more patients like myself.

Brenda Mayne, Ph.D

The untold story today is that of the living renal donor, before they donate and after when most are lost to follow up within  1-2 years of their surgery. An even more forgotten group of people that we almost never hear about are those patients that die from the donation procedure itself:

Living Kidney Donor Death/Mortality

The notes from the August, 2010 ACOT meeting include a statement by Dr. Feng of the Cleveland Clinic Foundation regarding "four reported deaths in kidney donors this year in the U.S." While some would argue that not all living donor deaths are the result of the procedure, Feng is referring to those which have been attributed to the surgery itself. He also said, "The fact that there were four kidney deaths with almost no publicity is...problematic." (171) We agree.

American nephrology is emerging as a house of cards when we consider the lack of true informed consent on home hemodialysis options and on the risks of renal transplantation and living renal donation. (here, here, and here) When I was entering the confines of the world of ESRD, the mantra I heard over and over again was I had to have a transplant from my entire nephrology medical team and essentially every one of my colleagues in the Internal Medicine and Family Practice departments. I only had one nephrologist in the last two years of my illness prior to initiating dialysis discuss the home dialysis option as a primary treatment option. He likewise discussed preemptive transplant in his consultation as well, but it was his information that started me down the path of home hemodialysis. Dr. Belding Scribner summed up true informed consent as well as I have heard in 1965:

“The adjustment and rehabilitation of patients with any chronic disease are improved by giving them a full explanation of their disease and its treatment and as much responsibility for their treatment as they can accept” 

Belding Scribner, 1965

I diligently researched the extensive risks of renal transplant especially in light of my prior cancer history. I had a testicular cancer in my 3rd year of medical school coupled with radiation treatments prophylactically which was the consensus in 1989. I was advised that my risk of cancer nearly recurrence 20 years later was negligible. On my own insistence, I requested a dermatology evaluation understanding the increased risk of skin cancer post transplant and that is when they discovered a very early malignant melanoma.  With two cancer scares in my life completely cured  by early surgical removal, I am not willing to add any further increased risk of future cancers from the immunosuppressive regimen after transplant.

Even prior to withdrawing from consideration of the renal transplant list, belatedly after I had already had a colonoscopy and cystoscopy as part of my transplant evaluation, I had decided to fore-go a preemptive transplant offered to me by my wife and daughter. My wife has had HTN, elevated cholesterol and some issues with borderline elevations of glucose on a couple of occasions and at the age of 50, I believed she would still need all of the renal function that she could retain for her own health. My daughter had yet to have any children which she has now had her first and a second is on its way now. Dealing with pregnancy and a reduced GFR places both the mother and her child at increased risk. I determined that renal disease was my burden to bare and I would not place another healthy individual at risk for what is my disease after all.

In addition to my recognition of the risks of transplant and the risks of donation for my loved ones, I became aware of the data for daily dialysis showing equal outcomes compared to cadaveric renal transplant. Pauly et al demonstrated this in a widely publicized paper in 2009. Unfortunately, the majority of patients are told that transplant has superior survival to dialysis, which is only true if comparing to in-center dialysis alone. When evaluating short daily dialysis and daily nocturnal applications,  Pauly presents data that should also be presented to all living donor candidates as well as trasnplant candidates so that they can compare the benefits of more frequent dialysis directly with transplant:

Survival among nocturnal home haemodialysis patients compared to kidney transplant recipients

Results. The total study population consisted of 177 NHD patients matched to 1062 DTX and LTX recipients (total 1239 patients) followed for a maximum of 12.4 years. During the follow-up period, the proportion of deaths among NHD, DTX and LTX patients was 14.7%, 14.3% and 8.5%, respectively (P = 0.006). We found no difference in the adjusted survival between NHD and DTX (HR 0.87, 95% CI 0.50–1.51; NHD reference group), while LTX survival was better (HR 0.51, 95% CI 0.28–0.91).

Today in the glamorous world of high tech renal transplants broadcast almost daily across this nations televisions stations, I would hope that Dr. Mayne's personal testimony of the harm done to her by the lack of informed consent and what would appear to be the doctor's zeal to proceed  even when his patient before him already had CKD-2 prior to donation. With the medical community continuing to push the envelope of living donor criteria, it is sobering to note the great harm done to a vibrant professional at the peak of her career. It is equally sobering to learn a new facit to the story of the first renal donor and his own struggle with ESRD.  It is time to re-examine the ethics of nephrology that fails so many patients by not giving them all of the information needed to make a true informed consent. It is time, my fellow colleagues in nephrology to first, do no harm.

First Do no Harm: The Living Renal Donor Dilemma

By Peter Laird, MD

Renal transplant offers the benefits of increased survival, normalized diet and life style and freedom from the burdens of dialysis. Since the first successful renal transplant in 1954 when Richard and Ronald Herrick, living donor renal transplant is the recognized gold standard renal replacement therapy for patients with ESRD. Many of the early renal donors have enjoyed long, healthy lives after donation. Ronald Herrick is no exception. He lived to the age of 79, dying in 2010 from complications of heart surgery.

Initially, candidates for renal donation underwent stringent physical examination and had to be free of any chronic illness that could lead to renal disease or cardiovascular complications. Today, as the demand for renal donation increases and is popular in the press and television news stories, criteria for renal donation is now much more relaxed. Early studies of the safety of renal donation appear to imply normal or even longer than average survival compared to the general population. The difficulty is that no one has a complete record of all renal donors since they are not followed in most centers past the first year. Some new data is now showing a significant decline in renal function in the first year after living renal donation that gives pause to the rush to increase this source of renal grafts:

Renal Function Declines in Living Kidney Donors

At one year post-nephrectomy, 131 (78%) donors had a 25% or greater increase, 27% had a 50% or greater increase, and 31% had a 0.4 mg/dL or greater increase in plasma creatinine compared with their pre-donation values.

In addition, the researchers found an association between mean arterial pressure (MAP) and a plasma creatinine rise of 25% or greater one year post-nephrectomy. Each 1 mm Hg increment in MAP at the time of donation was associated with a 6% increased risk of having a 25% or greater increase in plasma creatinine.

“There are few data addressing post-nephrectomy kidney function in contemporary living donors,” said Julie Lin, MD, MPH, FASN, senior author of this study. “We were surprised to find that relatively high proportions of donors met established clinical definitions for lower kidney function whereas the general expectation has been for higher levels of recovery at one year. Donors deserve quality information on the expected course of kidney function change after nephrectomy.”

The entire debate over payment for renal vendors is predicated on the belief that living donation renders no harm to the donor. The evidence from the illegal black markets from poor renal donors in Pakistan, India and Iran is far from reassuring with no net financial benefit to these people after loss of ability to work is calculated into the final analysis. Ronald Herrick gave his brother the gift of life and both lived exceptional lives.  However, in an open, regulated, legal market for renal donors, many will be motivated by the immediate financial reward without much thought on how it may change their own health and well being. For the 1 out of 3000 that die during renal donation, no amount of compensation accounts for their loss. 

The irony of continued calls for payment for renal donation is that we are now finally seeing the true promise of altruistic renal donation where many transplant chains are initiated by an altruistic donor. The power of love for our fellow man is the true message of the Ronald and Richard Herrick story. The power of the love of money by starting a regulated open market tempers the historical relevance of this truly modern medical miracle. The simple truth is that no regulated market will ever meet the demands of our nation that has so dismally failed to prevent obesity, HTN and diabetes that all lead down the path of end stage renal disease. Until these public health epidemics are controlled, the contrivance of a regulated organ market will be little more than a band aide at best, but it may also be the opening of Pandora's box. As in all things, first, do no harm.

 

The Slippery Slope of Shared Decision-Making

By Peter Laird, MD

The NY Times article titled When Ailments Pile Up, Asking Patients to Rethink Free Dialysis explores the ethical boundaries of shared decision-making, a new twist on the long held ethics of patient autonomy. (See prior Hemodoc post here, Bill Peckham's Comment from DSEN here)During the entire course of my professional career in medicine, my underlying ethical framework was that of patient autonomy. My understanding of my role in difficult cases was that of an educator giving informed consent of all available treatment options. Indeed, informed consent follows the accepted ethics of patient autonomy wherein patients make their own informed decisions, not the doctor.

In such, the medical community rejected the previous medical ethics known widely as paternalism where the doctor made decisions for the patient often without full consent or information. In my nearly 20 years of practice, I cannot recall at any time where the ethical platform of patient autonomy failed. Yes, there were difficult cases and at times continued support of a patient in dire straights with essentially no chance of recovery presented itself. Yet, in all that time, those that truly were beyond our help ended just that way, beyond our help no matter what the family desired. Nature took it's course.

There were other cases where the medical team was simply wrong in their assessment of the patient's prognosis. The most noted case that comes to memory is that of a teenage girl who became comatose for an undisclosed reason leaving her without oxygen for an undetermined amount of time. She had a suspected chemical abuse, but it was never documented or proved conclusively. As she lay motionless in the ICU day after day, the physician team approached her family several times with the bleakest of prognosis, yet the family remained faithful and never gave up. After about two weeks of the patient laying in a coma with no measurable responsiveness, her mother reported to us that she had moved her fingers. I didn't believe her.  The next day, the nurses began to tell us that she was moving her fingers and responding, yet on our examinations, she appeared completely comatose. It wasn't until the patient actually woke up the next day that we abandoned our opposition to continued treatment. 

Three months later, I was fortunate to meet this bright girl who did suffer permanent brain damage leaving her totally blind, but she was perhaps the most grateful patient I have ever encountered. Unfortunately, her gratitude towards her medical team was sorely misplaced, we had many meetings and consultations on how we could convince the family to withdraw care and let her die "in dignity." Never once did we question whether we were correct. We were flat out wrong even with all of our high tech assessments, high paid specialists, MRI's, CT's and brain wave tests.

The NY TImes article could truly be the poster child of a new medical ethic that the Renal Physicians Association (RPA ) calls shared decision-making. The NY Times article links to an outdated version of this RPA treatise from 1999, but RPA has several updated versions including the latest from October 2010.

Shared decision-making is now called the accepted method of ethical decision making by the RPA, but it is not in the least similar to the ethics of patient autonomy where the doctors fiduciary duty is to educate to the point of understanding so that the patient and his family or legal representative can make an informed decision. Instead, in my opinion, it is truly the basis for taking a step backwards in time to when doctors made all of the decisions themselves. 

Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis

Clinical Practice Guideline, Second Edition

Recommendation No. 8 

Establish a systematic due process approach for conflict resolution if there is disagreement about what decision should be made with regard to dialysis. Conflicts may occur between the patient/legal agent and the renal care team about whether dialysis will benefit the patient. Conflicts also may occur within the renal care team or between the renal care team and other health care providers. In sitting down and talking with the patient/legal agent, the nephrologist should try to understand their views, provide data to support his/her recommendation, and correct misunderstandings. In the process of shared decision-making, the following potential sources of conflict have been recognized: 1) miscommunication or misunderstanding about prognosis; 2) intrapersonal or interpersonal issues; or 3) special values. If dialysis is indicated emergently, it should be provided while pursuing conflict resolution, provided the patient or legal agent requests it.

On the surface, this sounds like a reasonable approach, however, the term "due process" introduces a term outside of medical ethics, this is a legal term. Am I simply injecting my own personal bias into their statements? Perhaps, but unfortunately, there is a dance between ethics and the legal world that is always in a state of evolution. Often the legal world follows the lead of the ethics world. If the due process in place that has criteria set by the state or other legal authorities for delivery of health care, then that due process over time could set up situations where care is requested, opposed by the health care team and denied by the paying authority whether private or state run. Granted we are not there today, but again, we are talking about slippery slopes that lead to inevitable outcomes. In a world today filled with many differing health care and legal systems, we need go no further than last  months news to see where the ethics of "shared decision-making" coupled together with specific "legal" criteria set in due process could lead here in America:

An Update on Baby Joseph: Expected to Leave Hospital soon for Pediatric Specialty Hospital

Baby Joseph was the center of an intense legal battle sparked by the decision of physicians at London Health Sciences Centre in Ontario, to ignore the parents’  wishes for a tracheotomy to make it possible to take their child home to be with his family for whatever time he had left.

Physicians at London Health Sciences Centre diagnosed the child as being in a persistent vegetative state (PVS) and said a tracheotomy would be invasive and futile treatment. Their plan was to take Baby Joseph off a ventilator and feeding tube. In the culmination of a lengthy series of legal maneuvers, the parents, Moe Maraachl and Sana Nader, moved their son on March 13 to SSM Cardinal Glennon Children’s Medical Center with the assistance of lawyers and Priests for Life.

When I first heard of the sketchy details of this case, I thought to myself that the parents were simply unreasonable and in denial. But then some of the details did emerge that the parents request was to simply have a tracheostomy tube placed so that they could take their child home to die. The cold hearted, in my opinion, medical team refused this very reasonable request and set up the entire confrontation. Simply put, if the medical team had listened to the heart felt request to allow the family the means of removing the child from the ventilator and place on hospice in the home, we never would have heard of this entire event. Instead, the medical ethics in place in Canada today is such that the autonomous decision making of parents of a terminal patient hoping only to correctly in my mind take their child home to die in the arms of his parents was soundly refused and openly opposed by his medical team who deemed a simple tracheostomy that takes only a few minutes to perform as futile. 

Sorry, to sound personal, but that was an erroneous decision made by doctors in Canada who usurped their authority in denying a commonly performed procedure for many terminally ill patients on a ventilator.  Palliative tracheostomies are often used as a means to allow patients to enter hospice in their own home. I am appalled by this entire episode of Baby Joseph and saddened that the RPA has actually laid the ethical framework for the same type of events to happen some day here in America. Baby Joseph's case inspires checks and balances against that old ethics called physician paternalism, it was wrong 30 years ago, it is still wrong today. Perhaps the RPA's commitment to shared decision-making in part explains the general lack of attention to informed consent by the American nephrology community. In other words, they are already making those decisions for us today.

This is all just my own opinion and commentary on the article in question and my own opinion of the RPA's Shared Decision-Making ethical position papers.