Dialysis from the sharp end of the needle

Satel's review of Fox and Swazey's Observing Bioethics is telling

By Bill Peckham

Sally Satel has a review of Observing Bioethics by Renee C. Fox and Judith P. Swazey, posted on The New Republic's new website the Book. Beginning over 30 years ago Fox and Swazey have study bioethics, through an in depth study of organ transplantation and chronic dialysis first in in their seminal book the Courage to Fail and then in Spare Parts.

Satel's review, The Right (and Wrong) Answers, is striking in its dismissiveness of bioethics:

American bioethics was born out of a desire to be relevant.

Ah, no. Bioethics was born out of a desperate need. 

While bioethics has been around for as long as humans have been sentient, in the sense of how to treat the dead and dying, bioethics really came to the fore with the advent of chronic dialysis and the decisions faced and made by Belding Scribner, in the early '60s. This is thoroughly documented in Fox and Swazey's earlier books and informs their concerns about modern efforts to use bioethics for political advantage and co-opt the hardest cases to create culture war cause célèbres (see Schiavo, Terri). And one should remember that it is Fox and Swazwey's early work that  overlaps Satel's well developed interest in creating an organ market.

The underlying problem Satel has with Fox and Swazey's work is the "Gift Exchange" that Fox and Swazey first document in '70s. The Gift Exchange is as relevant today as it was then and then as now, it undercuts the supposed moral imperative of establishing remuneration for kidney's, something which Satel is wholly in favor (optimal dialysis also undercuts the supposed imperative, but Satel has never addressed that point). In her review Satel offers:

Though clearly fond of the bioethicist-physicians, bioethicist-philosophers, and bioethicist-legal scholars they interviewed, Fox and Swazey describe themselves as “critical of what we regard as the field's deficiencies and blind spots.” They identify these as the use of dumbed-down teaching formulae, an insensitivity to cultural differences, and the tendency of American bioethicists to emphasize “individual rights, and rationality” instead of “community, and common good,” which are the values that Fox and Swazey  favor.

Here is Satel's core libertarian beef with bioethics, the idea that when society's collective needs are weighed against an individual's right to act as they wish, the individual is not given more weight. 

As recently as the Monday before Christmas Satel wrote:

Sadly, the transplant establishment insists that sick people languish on dialysis for years or die waiting for a kidney. They fear, on one hand, that the patient might remunerate someone for saving his life and, on the other, that any donor in financial need can’t possibly make a rational decision about his own best interest.

The problem isn't with the transplant establishment or bioethics, which holds the myopic in check, the problem Satal has is with libertarianism's inability to make her case.

Book Review

By Anna Bennett

Yesterday Today and Tomorrow
Personal accounts of people living with kidney failure
Collated by Melissa Darnley
94 pages. Published 2008. Kidney Health Australia.

I was in Seattle earlier this week, and Bill gave me a copy of Yesterday Today and Tomorrow.  Bill and Mel have both blogged about this book (here and here), and it is pretty exciting to hold it in your hands, flip through the pages, and look at the words and pictures that represent so much. After all, a lot of work went into its creation.  It is a testament to survival and gives hope and comfort to the reader.  In reading each entry, you are reminded that you are not alone. There is something that rings familiar with every page you turn.  It is easy to research the medical aspect of CKD, but this book shows real life impact: day to day struggles, doubts, victories and dreams.

This book is a resource that brings together personal stories in one concise edition. With subjects ranging from First Diagnosis, Treatment (Hemo, Home Hemo, PD, Transplant), Relationships, Personal Issues, Carer's and Donor's Perspective, Travel, Work, Leisure  and Hopes for the Future– all in the words of 33 contributors (Mel and Bill included) who are living with kidney failure. They are identified by name, age, profession (working, and retired), treatment and diagnosis.  There is a glossary for those who are just learning the language of kidney disease.  Although this book is published in Australia, it's message is universal, and the contributors are multi national.

The book’s pictures give us a snapshot of the lives of the contributors. One of my favorites is a picture from a few years ago, a goatee’d Bill, dialyzing at home, stretched out in his recliner, with Cairny right there perched between his legs, (and Australian Shepherds are not small dogs) lapdog/companion and guardian. A picture really is worth 10,000 words.

Yesterday Today and Tomorrow illustrates the diversity of kidney disease, yet its words bring comfort for anyone struggling with CKD or for those who love them.

You can order your copy through Kidney Health Australia. The exchange rate is close to parity; $12AUD is about 70 cents less in US dollars. Postage for my copy was $6.60AUD so figure $20USD will get you your very own copy (and support a good cause).

Yesterday Today & Tomorrow

I received a great surprise in the mail: my copy of Yesterday Today & Tomorrow collated by Melissa Darnley. Mel you'll remember is a dialyzor who, back in April, guest blogged about getting a book published down under. I was totally confused about what the final book would look like - I mixed it up with the 2007 Global Dialysis Directory which I also contributed. Mel's book is totally different.

Mel's book is great - I love it and not just because there is a picture of me and Cairny. It is comprised of quotes from various dialyzors from around the world organized into sections. I'll have a full review after I read it cover to cover.

You can order your copy through Kidney Health Australia. The exchange rate is close to parity; $12AUD is about 70 cents less in US dollars. Postge for my copy was $6.60AUD so figure $20USD will get you your very own copy (and support a good cause). both of which I highly recommend.

Publishing a Dialysis/Transplant book in Australia

By Melissa Darnley

When I was first diagnosed with kidney disease (FSGS) 17 years ago I went into the usual tailspin then started searching for answers and others with my condition. The thought of eventually needing dialysis filled me with dread because I knew nothing and no-one on dialysis. These were the early days of internet, so that was no help. The doctors were no help and the books available.......yuk, they were terrible. Scary things with the odd sketch of rather elderly people going for a slow walk or something equally uninspiring! Where were the real people, the people getting on with their lives, having fun, traveling, enjoying life with family and friends?

I pulled myself out of these depressing feelings of loneliness, didn't talk about what lay before me and got on with my life, but I always felt for those people like me, first diagnosed and no support, leaving those Nephrologists offices after that first visit in shock and going it alone.

So I decided to search out dialyzors and transplant people that live their lives well and asked them to tell me about the highs and lows of dialysis and transplant, their travel stories, their families and their fears and hopes for the future. Everyone was very excited to contribute including two overseas contributors, Pierre from Canada and our very own BILL PECKHAM heads the list with a special place in the Introduction! I then compiled their stories and real photos for all to see.

In Australia we have a National organisation called Kidney Health Australia that was as excited as I was about seeing a book of kidney patients stories and they agreed to publish it and so the long process of finding donations  to fund the book began. Two years down the track with several of the contributors now transplanted and several now deceased we are nearly there! I am reliably informed that the book is very nearly ready to print after much tooing and froing,much communication and many permission notes and should be available Australia wide as well as available as a download on the Kidney Health Australia website within the next few months.

I know stories like Bill's will inspire many Aussies to get out there and enjoy life and make the most of every day!
Cheers
Mel

KidneyTalk for the week of March 13th

The Offers, Daniel, Marjorie and Susan, talk about a book they wrote as a family: Dialysis without fear (Amazon, Barns & Noble). This KidneyTalk episode does give you a feel for the family, for instance we learn that they don't share Stephen's sense of humor but KidneyTalk didn't dive very far into the book. Going to one of the book seller sites will gives you the opportunity to read the publisher's review:

Drawing on his long medical career and more than seven years of personal experience with dialysis, Dr. Offer dispels many misconceptions surrounding this treatment, explaining how you can adapt to the new diet, travel, work and continue to partake in life's joys and celebrations. But the fears and hardships can be quite real, and Dr. Offer brings his years as a psychiatrist to bear as he provides practical advice on how patients can overcome them. Walking through each step of dialysis, he explains different types of treatment, examines the pros and cons of a transplant, and discusses side effects. Since dialysis affects the entire family, Dr. Offer and his coauthors also provide realistic insights into how relatives can cope and thrive together, sharing the humor, courage, and triumphs of real families who have successfully faced the challenges of dialysis. The result is an inspiring, practical guide that will help you and your family learn to overcome the difficulties of dialysis, live without fear, and enjoy every day.

I didn't realize he was a psychiatrist - it helps to explain their analytical, self aware approach to dialyzing. And on Amazon.com you can browse the three reader reviews or check out the review by Diabetes Health magazine.

As someone who has his own experience with dialysis I can quibble with some of the authors' framework but the book does provide a perspective I can't - that of the dialyzor's circle of support.

Review of Oxford Handbook of Dialysis

At usmle asghar reviews the Oxford Handbook of Dialysis published in 2004 and available through Amazon.com