Dr. Robin Eady to receive the Clyde Shields Distinguished Service Award

By Bill Peckham

Dr. Robin Eady,the "World's longest-surviving kidney patient" is going to be in Seattle next week to receive from the Northwest Kidney Centers the "Clyde Shields Distinguished Service Award, given to people who make significant contributions to the welfare of kidney patients through advocacy, clinical care or research." Dr. Eady is a great selection to receive the award. He knew Clyde Shields; Eady's first hemodialysis treatment in 1963 was in the bed next to Shields.

Eady went on to be one of Canada's first dialyzors and then one of the first to use hemodialysis in England. I think this means that he was one of the first few dialyzors in three different countries. After 24 years of using hemodialysis, he has lived with a transplant for the last 23 years - 47 years of renal replacement!

The article (it's a good article, read the whole thing) mentions Eady will be at two public events - I'll be at both:

• Tuesday June 22, 2:30 to 3:30 p.m.
  SeaTac Kidney Center, across from the airport on International Boulevard
  Dr. Eady will receive the Shields Award


• Sunday June 27, 1:30 to 3:30 p.m.
  Seattle Kidney Center, just east of downtown Seattle on the corner of 15th & Cherry
  Dr. Eady will be featured in a presentation entitled "Home Dialysis and Transplant made it possible to live 47 years--A conversation with Dr. Robin Eady."

The Sunday event will be attended by special guest Congressman Jay Inslee, a Congressional champion and long time advocate for kidney patients.

Comments

[Peter Laird, MD]

Bill, his story is compelling and inspirational. There were several long term survivors from the Seattle experiment. Nancy Spaeth is equally amazing with an incredible story of survival to this day. Whenever I get tired and feeling down, their stories serve as a real uplifting force. I am sure that in all of their years of survival, they had their moments of despair as well. Life is not a bowl of roses, but having the opportunity to continue on is an amazing testimony to the nobel experiment that Scribner and many others gave their life for.

[somerville]

Harry Houdini could voluntarily dislocate both of his shoulders, pick a lock he could not see using only a key held between his toes, and escape from a trunk tied in chains and dropped onto the bottom of the Hudson River in winter. Yet you will not only learn nothing about average human physiology from this example, but you will even mislead yourself about what humans can normally do if you focus on this one extraordinary case.

The reality of any phenomenon is determined by what happens in the typical case, and yet the media, in their constant craving for the sensational, exaggerate the significance of the exceptional case. Any attempt to deal rationally with the tragedy of renal failure has to begin with an honest confrontation with the reality of it, and stories like this only complicate the ability of patients, medical professionals, and the general public to comprehend renal disease.

[Bill Peckham]

Piffle.

[Peter Laird, MD]

Somerville is not someone that believes in the glass being half empty, vs half full, for him it is simply empty no matter what evidence is put before him to the contrary. Funny how he always lifts up renal transplant but puts down a long term transplant survivor who was first maintained for over 20 years on that terrible dialysis stuff. Quite the open minded optimist in my opinion. I remember reading philosophers that simply couldn't put a positive thought through their what I believe were there limited minds. I decided to quit reading their philosophy since it didn't represent my reality and I didn't want any part of their reality. Anyone that come up with that kind of criticism over such a wonderful story of survival is simply and amazingly stifled in my opinion.

Life can be good even with the challenge of renal disease. The story of Dr. Eady and the many others who benefited from the nobel experiment of dialysis deserve the praise for their example of simply surviving. It is a story worthy to report. Assuredly, Dr. Eady did not survive this long without a concerted effort on his part as well as his medical team. The nobel experiment of dialysis was hijacked by greed and corporate profiteering at the hands of the nephrologists that usurped the trust of their patients to line their pockets with cold, hard cash instead. It is a story that many can duplicate in the future with the right mindset to do that which is necessary to survive.

Thank you Bill for updating this success story as a source of encouragement for all to behold.

[Peter Laird, MD]

I remember someone explained to me the difference between average and normal when I was still young enough to be "normal."

It is NORMAL to be able to run 10 miles without any difficulty, it is average to not be able to run 100 yards without collapsing.

The reports by Dr. Blagg and Dr. Kjellstrand among others showing quotidian dialysis regimens equivalent to cadaveric transplant is the normal. The average patient who succumbs to profit driven in center usual care is Somerville's limited view of dialysis. In my opinion, Somerville's view of dialysis physiology is simply in error. The nobel experiment of dialysis already demonstrated the superior modality of more frequent and longer duration dialysis in the 1960's. In my opinion, our greatest hindrance to optimal renal dialysis is the negativity expressed by people like Somerville or whatever his real name is that paint a false picture of how well dialysis can preserve and protect life.

DSEN will continue to demonstrate with incredible examples like Dr. Eady the triumph of the human spirit over the devastating physiology of renal disease.

[somerville]

It is important to keep in mind that the ultimate social reality of renal replacement therapy is always the vector product of medical technology and public health resources. Although various optimal dialysis modalities, such as short daily dialysis, overnight dialysis, or NxStage may in theory yield better results, the decisive limiting factor is that these options are still available only to a very small number of patients, either because their governments, their medical systems, or their own capabilities restrict their access to them. Thus we create a profoundly misleading picture of the total social meaning of life on dialysis for the endstage renal population at large if we just focus on what the best technology can provide for the most capable patients in the most socially and medically advanced jurisdictions.

The general reality of life on dialysis is best reflected in the statistical average life expectancy of dialysis patients. Thus we have:

In the 20-39 year-old age group non-diabetics on dialysis have life expectancy of 20 years; diabetics have a life expectancy of 8 years.

In the 40-59 year-old age group non-diabetics on dialysis have a life expectancy of 13 years; diabetics have a life expectancy of 8 years.

In the 60-73 year-old age group non-diabetics on dialysis have a life expectancy of 8 years; diabetics have a life expectancy of 6 years.

When you supplement these data by an appreciation that 40% of the dialysis population now consists of diabetics, it is evident how dismal the average results of dialysis are. The fact that the life expectancy in all age groups of diabetics on dialysis remains essentially the same -- 6 to 8 years -- shows that life on dialysis is so toxic that it extinguishes what should normally be the decisive factor in determining remaining life expectancy, which is age. These severely curtailed life expectancies also have implications for the quality of life and health of dialysis patients, since they hardly live well and then suddenly die within a few years of starting dialysis. A 20 year-old with a life expectancy of 8 years is a profoundly sick person.

(Data taken from G. Danovitch, 'Handbook of Kidney Transplantation' (Philadelphia: Lippincott, 2001, p. 15)

Even with better forms of dialysis, the problems of gradual attenuation of vascular access, toxic cytokine release, abnormal creatinine levels promoting atherosclerosis and dementia, and restricted lifestyle remain, and the first two problems may well become worse rather than better with more frequent dialysis.

[Peter Laird, MD]

And it will stay just as dismal if all people have the negative approach to dialysis that Somerville has. The reality of how good nocturnal dialysis is, is NOT theoretical, it has proven benefit equal to cadaveric transplant. The only thing misleading about dialysis is that it HAS to done in the terrible manner that America does it. The disgusting fact remains that it never had to be the way it is. The facts remain that American greed and profiteering is what is responsible for the terrible data that Somerville diligently listed. It is my opinion that he represents the same negativity that prevails throughout the American dialysis profession that locks the majority of dialysis patients into the slavery of dialysis profiteering.

The reason dialysis patients drop dead at the alarming rate they do is because we are used as a commodity in dialysis units. When a dialysis unit is sold, the worth of the unit is based on how many patients are serviced by the unit. The majority of patients in America are given the very minimum amount of dialysis to keep them going, but not enough to thrive. Somerville continues to over look the proven benefits of optimal dialysis and now is even attacking the proven benefit of dialysis and transplant to give us the longest surviving renal patient in the world.

I am continually amazed at how negative Somerville can be even in the face of proven benefits of nocturnal dialysis which was first used in the 1960's. Yet because of corporate greed and profiteering, it is very much underutilized just as Somerville correctly mentions, but does that mean that DSEN and others should not educate and advocate for change? Call me dense and unsophisticated, but that kind of negatively makes no sense to my limited intellect. Like I said before, I studies many philosophers and philosophies when I was younger that led to a negative outlook on life. Their reality didn't represent my reality, so I decided to let the philosophers preach to themselves, they are really irrelevent to me.

[Peter Laird, MD]

The data on diabetics and dialysis must be also viewed in the underlying physiology of diabetes that leads to renal failure in the first place. We call it end organ damage that can occur in the heart, the brain, the eyes, the kidneys and in reality throughout the entire body due to the effect of diabetes on the vascular system. Any one that has end organ renal dysfunction due to diabetes is also likely to have devastating effects on the rest of their vascular system as well. In many ways, diabetes is a disease of the vasculature more than anything else.

Nevertheless, in the observational studies to date, diabetic patients benefit from optimal dialysis strategies as well as those that developed CKD from other causes. In addition, there is a vast amount of evidence that diabetic complications can be mitigated by tighter control that will prevent many of the end organ complications. Prevention is the key strategy in diabetes. For those that do progress to needing renal replacement therapies, nocturnal dialysis is a very viable option as well.

The fact that optimal dialysis strategies are not readily available has nothing to do with the medical justification for increasing frequency and duration of dialysis. In addition, the financial reality is that optimal dialysis strategies also save money if you wish to look at this from an economic perspective. In short, there are absolutely no reasons not to adopt universal quotidian dialysis strategies and especially for the diabetic population on dialysis. Negativity will not help a single dialysis patient obtain better care or better outcomes. I firmly reject such an approach as a viable philosophy of life.

[Kidneyhelp]

I can't help but agree with Peter's assessment of the long-term benefits of optimal dialysis. I spent 6+ years on dialysis, the last 3 at home with NxStage, six treatments per week. Not only did my health improve, but so did the quality of my life on daily dialysis. There is no comparison: 3-day, in-center treatment is outmoded and ultimately damaging because it never offers the patient a chance to escape the and constant "up and down" cycle of toxicity. Yes, the present system of in-clinic , 3-day/week treatments is driven not only by for-profit providers, but also by uneducated patients and lazy physicians. And that is why I and others interested in moving the field forward continue to hammer away through forums like DSEN and in our own dialysis communities about the real benefit of optimal dialysis.

[somerville]

A scientist looking at Dr. Eady's remarkable outcome and the overall dialysis population statistics in Danovitch's book would eliminate Eady's case from his data bank when smoothing out the curve as a misleading, outlying result. But when the non-scientific population and the media look at the phenomenon of dialysis, they focus on sensational and exceptional results such as Eady's, and this creates a mistaken impression of what the reality of dialysis is now. Eady's case might say something about what dialysis could be in the future, but there are many contingencies between that possibility and its potential realization.

We do not live in a world where what is medically optimal automatically becomes what is socially real. No matter how cost-effective daily dialysis might be, governments are likely to reject it because of the higher start-up costs, neglecting the downstream benefits. This is exactly what has already happened with Medicare payment for immunosuppressive drugs for renal transplant patients. Although it is certainly cost-effective to pay $20,000 a year to ensure that all those with a renal graft can stay off dialysis, since dialysis costs $60,000 a year and another renal transplant would cost $260,000, Medicare still refuses to pay for immunosuppressives because it irrationally over-estimates the significance of the high start-up costs for such a program. Any campaign to introduce widespread daily dialysis will face the same hurdles.

Most of the studies suggesting that daily dialysis is as good as cadaveric transplant are short-term, and they all show some slight lag of the dialysis outcomes behind the transplant outcomes. Over time, the impact of loss of vascular access, of pro-inflammatory cytokine release, and of the promomtion of dementia by non-physiologic levels of creatinine may well show real deficiencies which are not yet so evident in studies of daily dialysis compared to transplant.

But in comparing daily dialysis with transplant we have to ask a deeper question, which is what is health and what is disease? Disease etymologically suggests that it is 'dis-ease,' any abnormality which disrupts normal functioning and comfort. Medicine has long been criticized for its biologically centered view of patient health, neglecting the social, psychological, and spiritual dimensions of human well-being, and this same error is committed when daily dialysis is viewed so positively for getting the numbers right even though it remains profoundly disruptive of the patient's attempt to enjoy a normal lifestyle. Patients with endstage renal failure don't complain that they are in CKD-5, but that they are "on dialysis," since this intrustive treatment has itself become the disease for most patients. Daily dialysis only makes this iatrogenic disease worse, and whatever purely biological benefits are achieved through daily dialysis have to be discounted by the burden of intensified dialysis on the patient's lifestyle. When this element is factored in, cadaveric transplant wins out decisively over daily dialysis in improving the fate of patients with endstage renal disease.

The diabetic population, a large and growing segment of the dialysis patient group, may also see less benefit from daily dialysis over time. At anything less than normal hemoglobin levels, such as could be achieved with transplant but not with dialysis, diabetic complications develop more quickly. (J. McGill and D. Bell, "Anemia and the Role of Erythropoietin in Diabetes," Journal of Diabetic Complications, vol. 20, no. 4, p. 262 (2006)) The suggestion that this unfortunte subset of dialysis patients be reduced by preventative measures cannot work for type 1 diabetes, which cannot be prevented, and can at most have limited impact on type 2 diabetes, which is even more genetically driven than type 1 diabetes, and which includes many thin or normal weight patients. Even within the diabetic population, efforts to prevent the development of nephropathy by glucose control may well fail, since there is increasing evidence that the 30% of diabetics who develop nephropathy are a genetically distinct subgroup conditioned by inherited factors to express renal failure as part of the sequelae of beta cell loss. (A. Mollsten, et al, "The Endothilial Nitric Oxide Synthase Gene and the Risk of Diabetic Nephropathy," Molecular Genetics and Metabolism, vol. 97, no. 1, p. 80 (2009))

[Peter Laird, MD]

The only thing scientifically misleading is that dialysis in itself is anything but lifesaving. Diabetes is a devastating disease for many people especially once end organ damage occurs. The simple fact remains that until the 1980's, patients with diabetes were excluded from dialysis due to the untoward outcomes. To confuse the disease with the treatment is scientifically misleading. According to Somerville, people simply cannot do well on dialysis period and "outliers" like Dr. Eady are irrelevant. Sorry, Dr. Eady and his example are relevant and I applaud Northwest Kidney Centers for recognizing the contribution of survival. Only looking at the worst case is statistically misleading scientifically and would be rejected for its obvious bias.

What Somerville is also not relating is the medical relevant study of outliers and why they are able to survive. There are many examples of outliers subjected to study in many venues of science that revealed aspects of human physiology not known prior to studying so called outliers. Somerville would dismiss them as irrelevant when in fact they are the example to follow and emulate. Dr. Eady's remarkable survival is indeed an outlier compared to conventional incenter dialysis but he is NOT an anomaly. There are many long term dialysis survivors who unfortunately have not had the pleasure to offer up their stories of survival. That is a study that should be done to see what characteristics they possess to see what can be duplicated to the general population.

Somerville continues to offer nothing on which anyone would gain hope. Dr. Eady continues to offer nothing but hope which is something science cannot quantify. Are there scientifically validated survival factors for dialysis? You bet there are. DSEN is dedicated to elucidating these factors in an easy to read format. I think especially of the example of Lori Hartwell of RSN living as another such example of the hope that resides with in us. According to Somerville her example is also irrelevant. I beg to differ.

[somerville]

The primary burden of disease is the loss of physical function from the pathology; the secondary burden of disease includes any painful, inconvenient, difficult, or uncomfortable treatments the disease requires. Both are aspects of the disease, and to count only the first as the cost of the disease but not the second, since it is a 'treatment,' is to ignore the lived reality of the patient's experience.

For a long time medical ideology tried to shape patients' understanding of disease and treatment so that they would be grateful for whatever medicine could provide for them. However, with the increasing stagnation of medical progress over the last several decades, patients who were once grateful for insulin or dialysis have come to identify the inadequate treatments for their condition as the very essence of their disease experience. Thus patients complain that they are 'on insulin,' 'on dialysis,' 'on chemo,' 'confined to a wheelchair,' 'in an iron lung,' 'on crutches,' or 'on life support,' rather than focusing on the underlying disease per se as the essence of their experience of their illness. While older literature on endstage renal disease or diabetes insisted that patients understand these conditions in terms of the 'miracle' of dialysis or insulin, now we encounter patient-sponsored websites called 'I Hate Dialysis' or 'Society for an Insulin-Free World.' From this perspective, we have to recognize that intensifying dialysis unavoidably intensifies the patient's experience of disease, even though it has undeniable medical benefits as well.

Still we should be skeptical about the value of intensified dialysis regimens even apart from their cost to the patient's lifestyle, given the short time span of experience with them. Over the longer term its current claim to be just as good as cadaveric transplant may seem premature, if only because dialysis itself is not a medically benign intervention, even if performed more slowly and with shorter interruptions. Dialyis is genotoxic, and the evidence now shows that the more dialysis the patient receives, the greater the cancer risk. Long-term use of longer dialysis treatment times per week may well make this risk unacceptably high. (R. Roth, et al, "Genotoxicity Evaluation in Chronic Renal Patients Undergoing Hemodialysis," Genetics and Molecular Research, vol. 7, p. 438 (2008)) Dialysis promotes an inflamatory state in the body and may require more complex interventions, such as hemodiafiltration, to minimize this, but whether patients could manage this at home may be doubted. (S. Panichi, et al, "Inflamatory Pattern in Hemodiafiltration," Contributions to Nephrology, vol. 161,, p. 18 (2008)) Physiological levels of creatinine may be necessary for patients to avoid premature dementia risks, but even improved dialysis regimens cannot correct that problem, which only transplant can hope to address. ("Kidney Disease Linked to Dementia," Nephronline Weekend Edition, 23 (2008)) As mentioned in the previous message, diabetics on dialysis will experience intensified diabetic complications from anemia, which also cannot be corrected by any intervention short of transplant. And finally the problem of loss of vascular access will only factor into the comparison of intensified dialysis regimens with cadeveric transplant when we have longer term experience with the former.

So it seems that the optimal solution to endstage renal disease has to consist in some measure which dramatically increases the number of live donors. This would also help those for whom transplant is not an option, since the dialysis population would be sufficiently reduced to open up more resources to support quotidian dialysis.

[Peter Laird, MD]

Dear Somerville, those that write on DSEN have direct experience with both incenter conventional care and expanded daily dialysis regimens. I don't know what you are comparing, but there is no comparison for me between the two settings. You keep referring to my alleged horrible quality of life, and I say you are 100% in error. People can live productive and effective lives on dialysis which is well documented in the literature. I am convinced you will never be convinced so I won't try other to say you have your own private, negative bias against it appears all forms of renal replacement since Dr. Eady has had a transplant longer than he was on dialysis. He continues to be an example worthy of the praise he deserves. Enough said.

[Bill Peckham]

The Northwest Kidney Centers links to a 2002 interview with Dr. Eady: The dawn of dialysis - reminiscences of a patient. It's an amazing story. How was it that someone from outside Washington State, from outside the US, was admitted to Seattle's dialysis program? Dr. Eady says this:

"Dr Scribner had arranged with Dr Lionel McLeod, then in charge of the renal service in the University of Edmonton, Alberta, Canada, that I would receive training as a renal technician in Seattle. Then, when I was fit enough, I would move to Edmonton, where I would work in the new Artificial Kidney Laboratory. I would continue to receive dialysis in Edmonton until the treatment became available in England."

Apparently, Scribner opened a slot to Eady because Scrib had work for Eady to do.

Expectations have diminished over time.

[somerville]

Can patients really live well on dialysis? Studies show that 54.4% of dialysis patients are depressed, and 7.8% of them are severely depressed. (S. Johnson and S. Dwyer, "Patient Perceived Barriers to Treatment of Depression," Kidney International, vol. 39, p. 1599 (2008)) One quarter of all patients eventually prefer to withdraw from treatment rather than continue with the type of life that dialysis offers them. (D. Orcopoulos, "Withdrawal from Dialysis," The Lancet, vol. 246, p. 3 (1995)) The actual suicide rate among dialysis patients has been estimated to be 400 times higher than in the general population, though some have sought to distinguish this from ordinary suicide by characterizing it as "an understandable response to a burdensome treatment." (J. Levinson, 'Textbook of Psychosomatic Medicine' (Arlington: American Psychiatric Publishing, 2005) p. 227) J. Levy, et al, 'Oxford Handbook of Dialysis' (Oxford: Oxford University Press, 2001) p. 534 offer a summary assessment of dialysis as a 'miserable experience' which patients and their families may well find worse than death.

So do we make things better by making the treatment more burdensome? The answer must ultimately depend on how much of the suffering of dialysis patients now documented arises from their poor medical state, which intensified dialysis would improve, or their experience of the burden of treatment, which daily dialysis would worsen. So far the data are not available to answer this question.

[Bill Peckham]

Choosing to stop or not use dialysis is not suicide. That would result in death from kidney disease. Dialysis isn't the disease. The disease is CKD. CKD comes with an irreducible burden, as does any illness.

Selecting a treatment (or even to treat) is a choice; the majority of people who try more frequent dialysis, particularly more frequent nocturnal home hemodialysis, find it is less of a burden then conventional incenter dialysis.

All of which has nothing to do with Dr. Eady. Somerville I find your comments to be a simple case of odious anonymous internet chatter.

[Peter Laird, MD]

Somerville completely overlooks the high rate of depression with renal transplant patients as well. It sucks to have kidney disease, but it would be worse if we had kidney disease before 1960.

[somerville]

Every human has to draw resources from the surrounding environment to continue living, whether these consist of the ordinary roster of things such as water, food, and air, or an unusual range of things such as peanut-free foods to avoid shock, insulin to avoid acidosis, or dialysis to avoid lethal uremia. Any voluntary choice to stop taking in what a person knows is necessary for survival is 'death-directed action against oneself,' or suicide, whether what the person foregoes is usual or unusual. Just because needing an air hose during deep-sea diving is unusual, no one would say that a diver who voluntarily cut his air hose underwater and drowned had not committed suicide. The famous psychiatrist Thomas Szasz usefully clarifies the confusions over suicide in his 'Fatal Freedom: The Ethics and Politics of Suicide' (Syracuse: Syracuse University Press, 2002) by noting that while we distinguish in law between the various types of homicide by a variety of terms which allow us to understand that they all refer to killing another person but differ only in whether we approve of them or not (e.g., self-defense, military action, police action, judicial execution, murder), our vocabulary of self-killing is impoverished by having only one term, 'suicide,' which unavoidably expresses disapproval. This induces people to want to call some deliberate self-killing suicide and other deliberate self-killing merely 'letting oneself die,' but the distinction is vacuuous and is just an intellectual dodge to avoid having to use a disapproving term for acts we don't want to condemn. In short, if a person knows he needs dialysis to live and decides not to continue with it, that is unquestionably a deliberate self-killing or 'suicide,' although we might want to call it something else beyond we don't want to burden the person with the same negative connotations that 'suicide' carries.

For the 25% of dialysis patients who voluntarily choose to stop dialysis knowing that this will cause their death, the situation of people with endstage renal failure before 1942 (or whenever you want to locate dialysis becoming a real possibility for patients) was indeed no different than it is today, 68 years later. Death is simply preferred to life. You could even argue that the situation prior to the general availability of dialysis was better than it is for this 25% of the dialysis patients today, since then the patients simply died, whereas now they have to go through the stress of killing themselves to avoid a treatment they find worse than death.

While the suicide and depression rates among renal transplant patients are higher than normal, they are no where near as high as those for dialysis patients, so there is certainly some gain in perceived quality of life.

Since the original story about Dr. Eady was presented for its implications about how good dialysis could be generally, all the comments so far posted in response, whether endorsing or criticizing that implication, seem relevant to the topic.

[Peter Laird, MD]

Only a true philosopher could take a true positive and turn it into a false negative. That which is black is white and that which is white is black in the eyes of philosophers. Reaching a point where further treatment in light of overwhelming co-morbidities is not suicide, it is simply ending treatment when there is little or no expected benefit, which as a philosopher you should understand well is a basic tenant of medical ethics and autonomy.

The people that I have seen stop dialysis treatments were not in the least suicidal, and in fact it is unethical to stop treatment on a person that is considered suicidal. In my opinion, you as a philosopher should easily understand that distinction. Patients on dialysis in this situation have simply run out of viable options to continue the battle of life in our frail human flesh. Not to have the option to stop dialysis treatment in the face of pain and suffering from co-morbid conditions is unethical. Dialysis patients have a high rate of cancer and many other secondary outcomes so of course, many will choose in dire circumstances to stop treatments in such situations. It is not suicide to stop treatment in such a case. In addition, it is against the law in the majority of states in America to assist in suicide by a physician. The legal and ethical aspects of terminating treatment is well established under the ethics of autonomy and is NOT in any sense suicide as deemed by the courts.

I have participated in dozens if not hundreds of cases where patients and their families decided to withdraw care. I have never participated in assisting suicide in any of these cases, it is illegal to do so in my state. One of the evaluations that is completed in ALL of these cases is the issue of suicidal ideation and in some cases the psychiatrist is needed to sort out the issues in complex cases, but an assessment of suicidal ideation is part of all withdrawal of care cases whether by the attending physician or in consultation with a psychiatrist.

Somerville, in my opinion, you do your profession a great miss-service in your biased view of dialysis especially in regards to the issue of withdrawing artificial life support, specifically dialysis and calling withdrawal of care suicide when it is well defined in ethics and the law to not be so. Suicide is a crime in the overwhelming majority of states and withdrawing care is an accepted patient right based on the ethics of autonomy and letting the natural course of a terminal disease prevail when all hope is exhausted. In my opinion, you continue to conflate the two terms when you should be able to distinguish between the two very readily. In my opinion, you improperly assign an incorrect definition of withdrawal of care as suicide. DSEN, the courts and medical ethics disagrees with what I believe in my opinion your biased view of dialysis represents.

[somerville]

Suicide is not a crime anywhere in the developed world, and has not been since the 19th century, when the punishment for it was burial at the crossroads at midnight with a stake through your heart plus escheat of your estate. To make someone assisting you in the commission of a perfectly legal act a criminal for doing so is utterly absurd, but that is the situation we now have in many Western legal systems.

I can only refer you back to the useful distinction made by Dr. Szasz in the work I cited above. It is vital to criminal law to separate our moral or legal disapproval of killing other people from the question whether someone has in fact killed another person or not. That is why we distinguish concepts of killing in self-defense, killing as part of legal execution, killing in military action, or killing in first degree murder, manslaughter, gross negligence, etc. But as Szasz notes, many confusions arise because we do not distinguish in the case of self-killing between killing oneself in a way society approves of, as when a person voluntarily decides not to continue with useless medical interventions, or killing oneself gradually by eating too much fat, or killing oneself quickly in a fit of alcoholic depression, which are modes of self-killing which are criticized. For the whole range of acts which are factually acts of self-destruction, we just have the one word, 'suicide,' which carries a strong connotation of doing something that should be morally disapproved of. So we are forced rather artificially and misleadingly to say that someone who has most certainly acted to end his own life has 'not committed suicide' just because this would imply disapproval, though there is no doubt that the acts committed were factually acts of self-killing.

But suicide is often a good thing. Many cultures, from Ancient Rome to modern Japan, find killing oneself to preserve personal honor quite laudatory. The Ancient Greeks in the Myth of Silenus held that the best thing for mankind was either never to have been born or to die as soon as possible, so here again suicide would be seen as a good choice. For my part, I greatly admire those renal patients who find the courage and profound existential honesty to look frankly at their lives on dialysis and reject them as beneath their dignity.

I was often in Communist East Berlin before the collapse of the Honnecker regime, and life there was anything but free. Many people could not tolerate this lack of freedom and risked nearly certain death in carrying out essentially hopeless escape attempts to gain more freedom. Essentially they were making the choice to die rather than endure the lack of freedom they experienced where they were. But the lack of freedom because of political oppression in East Germany was not one millionth as bad as the lack of freedom involved in living on any form of dialysis, so why do we celebrate the courage of people attempting hopeless escapes from East Germany, but refuse to promote suicide as an option for dialysis patients? More importantly, why do we find it reasonable for people to risk almost certain death to escape the 'intolerable' lack of political freedom in East Germany, but still insist that living with a million times less freedom on dialysis is somehow still able to offer people a good life?

[Peter Laird, MD]

Suicide is good? Sorry, you can stay in your ivory tower of philosophy. the rest of us live in the real world.

[somerville]

I think that the key issue which advocates of daily dialysis as an equivalent therapy to cadaver transplant have to address is the central value of freedom to human life. If people were willing to risk nearly certain death to escape the denial of social and political freedom which life in East Germany offered, then the chance of freedom from severe oppression must be more important than life itself to many normal individuals. But it is patently obvious that being tied to dialysis every day for the rest of your life represents a much more serious loss of freedom than living in East Germany did, so to say that that form of treatment can offer an acceptable lifestyle is highly questionable. When the state of New Hampshire chose as its motto the phrase 'Live free or die,' it was not just affirming the credo of a depressive psychopath, but stating a value which it clearly felt many normal people could endorse.

Ultimately, the advocates of daily dialysis as a reasonable solution to endstage renal failure over-emphasize its medical advantages while neglecting its profound psychological cost.

[Stanley Shaldon. MA.MD.FRCP]

Allow me to make a personal comment on the Robin Eady Saga. In 1963, his father came to see me at the Royal Free Hospital as his son had end stage renal failure. We were full and I recommended that he tried to get into Seattle. Scribner took him on temporarily on and then he went to Lionel Mcleod in Canada until we had a place for him at Royal Free Hospital. I persuaded Prof Butterfield to take him on as a medical student at Barts where he qualified in medicine and also married my best dialysis nurse and went on home HD.He received an unrelated cadaver kidney transplant in 1988 after 25 years of dialysis. He qualified in medicine and became a renown dermatologist and is now retired and has several grandchildren. Having known him both as my patient and later as a personal friend, I would characterise this unusual man as having an extremely strong desire to survive and lead as normal a life as possible. His story should be held up as what an individual can achieve with a severe and life threatening handicap if he has a strong enough motivation to live.
Stanley Shaldon

[Bill Peckham]

Thank you for writing Dr. Shaldon, you are held in the highest esteem by all of DSEN's contributors. It was a great pleasure to meet Dr. Eady; I was particularly heartened to hear him speak in support of travel accommodation for those that use dialysis. Dr. Eady and I share a belief that travel is an important part of living "as normal a life as possible". Dr. Eady's story is indeed very inspirational.