On Tuesday, November 11, in the U.K., thirteen year old Hannah Jones persuaded her hospital to abandon the legal proceedings that could have potentially forced her to have a heart transplant against her will.
Hannah was diagnosed with leukaemia at the age of five and was given a high-strength drug to kill off the infection that also caused a hole to develop in her heart. She was left with severe heart damage that requires treatment with a combination of drugs and a special pacemaker. After being told the only solution was a transplant, Hannah decided against it because there was a strong chance she would not survive the procedure and, if she did, the leukaemia could return. The new heart would also last only 10 years at best and she would need constant drug treatment. In the end she decided to return home to Marden near Hereford under the expert care of her mother, a specialist nurse.
But in the complex right-to-die case, her local hospital began High Court proceedings to temporarily remove her from her parents' custody to allow the transplant to go ahead. Hannah was required to plead her case to a child protection officer. Hannah told doctors and the officer that she believed the treatment was too risky and that she would prefer to enjoy her remaining days in the company of family and friends. Hannah's plea was ultimately compelling enough to convince the child protection officer to take her side, and persuade the hospital to back down.
Hannah's story poses another layer to the right to die question that makes it even more complex. The primary factor that makes this decision is difficult is the fact that Hannah is not an older adult individual who has suffered from a painful terminal disease their entire life. Rather, Hannah is a young girl, with potentially her entire life ahead of her. Her choice in this matter is one of quality of life, and I do agree that she (and her family) should have the right to make that final decision. However, I can also see the hospital's conflict in that they want to do everything they can to save the life of this girl. The family may not have the entire medical know-how of the experts at the hospital to fully evaluate the risks possibilities they are facing. Additionally, the hospital may be able to evaluate the situation from a purely medical standpoint of whether the procedure is too risky or not, while the family may be too emotionally drained from all the years of distress they've faced throughout the course of Hannah's medical treatment. Ultimately, I feel that the resolution taken is the correct one, to follow the wishes of the patient and her family. However, I definitely understand how difficult it must be for hospital staff to stand back and do nothing while this young girl with her entire life ahead of her chooses to die, especially when there are existing viable medical alternatives out there that may possibly save her life.
Story at: http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/girl-13-wins-right-to-refuse-heart-transplant-1009569.html
Friday, November 14, 2008
Thursday, November 13, 2008
With Friends Like These, It's Best To Get It All Down in Ink, Or How Sobchak and Kaufman Killed Surrogate Decision Making
In recent classes we've debated the topics surrounding surrogate decision making from acting on advanced directives to substituted judgment standards in the context of end-of-life determinations. We haven't yet tackled the same decision making questions that arise for surrogates when a loved one dies before stating precisely how and what the ceremony of remembrance might be. However, to keep it light, I'll offer as exhibits, scenes from popular culture that might shed light on why the state might not be crazy about granting family and friends the final say. Specifically, I would like to look at the untimely passings of Donny Karabotsos and Gram Parsons.
In the penultimate scene of the Coen Brothers' cult classic, The Big Lebowski, Walter and The Dude perform the last rites of their dear friend, Donny. Despite his generosity, loyalty, and other personality traits that would have made him the perfect Thurbian, hen-pecked husband or ever prudent older brother, poor Donny has apparently died without family members through blood or marriage. Therefore, the Falstaffish Walter Sobchak serves as master of ceremony on a stage made of beach dunes to an audience of one, The Dude, thus:
"Donny was a good bowler, and a good man. He was one of us. He was a man who loved the outdoors... and bowling, and as a surfer he explored the beaches of Southern California, from La Jolla to Leo Carrillo and... up to... Pismo. He died, like so many young men of his generation, he died before his time. In your wisdom, Lord, you took him, as you took so many bright flowering young men at Khe Sanh, at Langdok, at Hill 364. These young men gave their lives. And so would Donny. Donny, who loved bowling. And so, Theodore Donald Karabotsos, in accordance with what we think your dying wishes might well have been, we commit your final mortal remains to the bosom of the Pacific Ocean, which you loved so well. Good night, sweet prince."
And after butchering Hamlet, Walter empties the coffee canister serving as an urn against the wind covering both The Dude and himself with Donny's remains. Now, while Walter claims to be acting in accordance with what he thought Donny's dying wishes might have been, suffice it to say such wishes probably didn't include being dusted over his friends' faces after an evocation of Nam flashbacks. In the Dude's own words, "With friends like these...."
Rock'n'Roll has had its fair share of morbid death scenes, but the passing and subsequent events surrounding the death of Gram Parsons has to be the most bizarre. After founding the Burrito Bros., composing the Byrds' best album and writing songs for the Rolling Stones, Gram Parsons came back to California to get clean. That's right...came to California to get clean. By the late 1960s, Parsons would routinely disappear in the desert near Joshua Tree while under the influence of psilocybin or LSD. On the last occasion he was accompanied by Margaret Fisher and the infamous rock'n'roll roadie, Phil Kaufman. Tragically, Parsons died at the age of 26 from a lethal combination of morphine and alcohol. At this point things get strange.
Prior to his passing, Parsons was reported to have said that he wanted his body cremated at Joshua Tree and his ashes spread over the prominent Cap Rock. Parson's stepfather however arranged for a private ceremony in New Orleans and neglected to invite any of his friends from the music industry.
Acting on his alleged promise, Kaufman borrowed a hearse and managed to purloin Parsons' corpse from the airport security and drove out to Joshua Tree to commence cremation ceremonies. Needless to say the nincompoop Kaufman was not trained in cremation and instead thought pouring five gallons of gasoline into an open coffin and lighting a match would do the trick.
It didn't. The half burned remains were eventually returned to Parsons' step-family, who claimed that Gram's body was only 60% mutilated. Other reports emerged that Kaufman left 35 pounds of Gram's charred body in the desert. Kaufman was arrested not long afterwards, however since there was no law on the books against stealing a dead body at the time, he was only fined for stealing a coffin.
The lesson to be learned from both accounts is to purchase a Moleskine and a Sharpie and write it all down. Do not leave any important decisions regarding your health or body left to the idiocy of family and friends. Have fun with it...imagine every Edward Goreyian tragedy that could befall you, and the likely and not so likely damages you might suffer...and provide instruction.
http://comunidad.ciudad.com.ar/argentina/capital_federal/visualmix/vonzai/gorey.html
W is for Wyatt who was guillotined by the Deans.
Instruction One: If my head can still listen to music, keep me alive and start shopping my resume.
Instruction Two: If music is no longer an option for me, get me a gig in a John Carpenter film and then off to organ donation or plastination.
Instruction Three: Please do not gasoline and alight me. Please do not powder your faces with me.
Instructions Four: Songs to be played at the wake: "Sweep Out the Ashes in the Morning," "Don't Let the Sunshine Fool You," and "Hey, That's No Way to Say Goodbye."
Begging you to write it all down,
JWD
In the penultimate scene of the Coen Brothers' cult classic, The Big Lebowski, Walter and The Dude perform the last rites of their dear friend, Donny. Despite his generosity, loyalty, and other personality traits that would have made him the perfect Thurbian, hen-pecked husband or ever prudent older brother, poor Donny has apparently died without family members through blood or marriage. Therefore, the Falstaffish Walter Sobchak serves as master of ceremony on a stage made of beach dunes to an audience of one, The Dude, thus:
"Donny was a good bowler, and a good man. He was one of us. He was a man who loved the outdoors... and bowling, and as a surfer he explored the beaches of Southern California, from La Jolla to Leo Carrillo and... up to... Pismo. He died, like so many young men of his generation, he died before his time. In your wisdom, Lord, you took him, as you took so many bright flowering young men at Khe Sanh, at Langdok, at Hill 364. These young men gave their lives. And so would Donny. Donny, who loved bowling. And so, Theodore Donald Karabotsos, in accordance with what we think your dying wishes might well have been, we commit your final mortal remains to the bosom of the Pacific Ocean, which you loved so well. Good night, sweet prince."
And after butchering Hamlet, Walter empties the coffee canister serving as an urn against the wind covering both The Dude and himself with Donny's remains. Now, while Walter claims to be acting in accordance with what he thought Donny's dying wishes might have been, suffice it to say such wishes probably didn't include being dusted over his friends' faces after an evocation of Nam flashbacks. In the Dude's own words, "With friends like these...."
Rock'n'Roll has had its fair share of morbid death scenes, but the passing and subsequent events surrounding the death of Gram Parsons has to be the most bizarre. After founding the Burrito Bros., composing the Byrds' best album and writing songs for the Rolling Stones, Gram Parsons came back to California to get clean. That's right...came to California to get clean. By the late 1960s, Parsons would routinely disappear in the desert near Joshua Tree while under the influence of psilocybin or LSD. On the last occasion he was accompanied by Margaret Fisher and the infamous rock'n'roll roadie, Phil Kaufman. Tragically, Parsons died at the age of 26 from a lethal combination of morphine and alcohol. At this point things get strange.
Prior to his passing, Parsons was reported to have said that he wanted his body cremated at Joshua Tree and his ashes spread over the prominent Cap Rock. Parson's stepfather however arranged for a private ceremony in New Orleans and neglected to invite any of his friends from the music industry.
Acting on his alleged promise, Kaufman borrowed a hearse and managed to purloin Parsons' corpse from the airport security and drove out to Joshua Tree to commence cremation ceremonies. Needless to say the nincompoop Kaufman was not trained in cremation and instead thought pouring five gallons of gasoline into an open coffin and lighting a match would do the trick.
It didn't. The half burned remains were eventually returned to Parsons' step-family, who claimed that Gram's body was only 60% mutilated. Other reports emerged that Kaufman left 35 pounds of Gram's charred body in the desert. Kaufman was arrested not long afterwards, however since there was no law on the books against stealing a dead body at the time, he was only fined for stealing a coffin.
The lesson to be learned from both accounts is to purchase a Moleskine and a Sharpie and write it all down. Do not leave any important decisions regarding your health or body left to the idiocy of family and friends. Have fun with it...imagine every Edward Goreyian tragedy that could befall you, and the likely and not so likely damages you might suffer...and provide instruction.
http://comunidad.ciudad.com.ar/argentina/capital_federal/visualmix/vonzai/gorey.html
W is for Wyatt who was guillotined by the Deans.
Instruction One: If my head can still listen to music, keep me alive and start shopping my resume.
Instruction Two: If music is no longer an option for me, get me a gig in a John Carpenter film and then off to organ donation or plastination.
Instruction Three: Please do not gasoline and alight me. Please do not powder your faces with me.
Instructions Four: Songs to be played at the wake: "Sweep Out the Ashes in the Morning," "Don't Let the Sunshine Fool You," and "Hey, That's No Way to Say Goodbye."
Begging you to write it all down,
JWD
Keep your Friends Close and Your Surrogates Closer
Slate Magazine has an article about couples using one of their mother's as a surrogate if the wife is unable to carry the child herself. In this most recent case a woman marries, has two children,and a hysterectomy and a divorce and then re-marries. Her new husband wants to have children and all they are missing is the womb. So the wife's mother volunteers to have her daughter and son-in-law's embryo implanted in her.
At the age of 56 grandma gave birth to triplets. It makes sense that if you would entrust someone with your embryo, it should be someone very close to you, and a familial relationship is obviously even better. However the author raises potential sticky situations:
"Motherhood is splintering. You can have a genetic mother, a gestational mother, an adoptive mother, and God knows what else. When one of your moms is Grandma, it's even more confusing."
I think as long as the surrogate is healthy and the doctor approves there is nothing wrong if they are OK with it. While the author thinks it's just plain creepy, it's about as creepy as any surrogate mother relationship, however it's not with a stranger.
At the age of 56 grandma gave birth to triplets. It makes sense that if you would entrust someone with your embryo, it should be someone very close to you, and a familial relationship is obviously even better. However the author raises potential sticky situations:
"Motherhood is splintering. You can have a genetic mother, a gestational mother, an adoptive mother, and God knows what else. When one of your moms is Grandma, it's even more confusing."
I think as long as the surrogate is healthy and the doctor approves there is nothing wrong if they are OK with it. While the author thinks it's just plain creepy, it's about as creepy as any surrogate mother relationship, however it's not with a stranger.
Wednesday, November 12, 2008
FILE UNDER: THIS COULD BE BIG
http://news.aol.com/health/article/marrow-transplant-may-have-cured-aids/246178
Unfortunately (or fortunately as the case may be), I cannot comment on this as of yet...just wanted to pass it along as soon as I could.
JWD
Unfortunately (or fortunately as the case may be), I cannot comment on this as of yet...just wanted to pass it along as soon as I could.
JWD
Sunday, November 9, 2008
UIC Medical Center Pays $2 Million to United States and State of Illinois to Settle Liver Transplant Fraud Suit
In November 2003, the University of Illinois paid the United States and the State of Illinois $2 million to settle a "whistleblower" lawsuit brought by Dr. Raymond Polak, a liver transplant surgeon and professor at the University of Illinois College of Medicine, that alleged that the University's Medical Center at Chicago improperly diagnosed and hospitalized certain patients and exaggerated the seriousness of their medical conditions to liver Status 1 - confined to intensive care and likely to die within 7 days, and liver Status 2A - chronic liver disease with sudden deterioration, in intensive care, and likely to die within 7 days, to allow them to become eligible sooner for liver transplants. The suit was brought under the False Claims Act and the Whistleblower Reward and Protection Act. Similar allegations were settled around the same time with the University of Chicago and Northwestern Memorial Hospitals. Dr. Pollack received 25%, the maximum allowed by the law, of the total settlement proceeds, which added up to be over $500,000. UIC also payed $300,000 for Dr. Pollak's attorney fees, expenses, and costs.
The suit alleges that the improper hospitalization and diagnoses enabled UIC to transplant enough patients to meet the minimum number of liver transplants necessary to be certified under the Medicare and Medicaid programs, thus enabling it to receive federal and state reimbursement for the procedures. Illinois Attorney General Lisa Madigan said, "A hospital's desire to receive additional state and federal health care dollars should play no role in whether or not a patient is eligible for an organ transplant...Not only did the defendant defraud the state and federal governments, it endangered individuals. These actions are legally and morally wrong."
This case reminds me that, although hospitals should be examples of high integrity, places where people are born and lives are saved, they are just like any other place of business, motivated by money. Are these hospitals any better than the organ black market? Aren't they both run by a thirst for monetary reward rather than by a regard for life? Neither in this case have respect for federal laws and systems in place, such as the Organ Procurement and Transplant Network and the United Network for Organ Sharing, which are designed promote the most ethically fair and logical processes of organ donation. What separates other rogue operations from those that on the surface appear to be on the patients' side, but which choose not to abide by rules that promote life?
Although the settlement contained certain "integrity requirements" in addition to payment, I wonder how much integrity a hospital can regain after such gross indiscretion. How long will it take to regain the public's respect and trust, when the place in whose hands a person puts his or her life turns out to have such disregard for them? A hospital's walls are filled with people who have taken an oath to promote and protect human life, and it saddens me tremendously that those lives were manipulated just to make the cut and to make a buck.
The case is United States of America and State of Illinois ex re. Raymond Pollak, M.D., v. Board of Trustees of the University of Illinois and the University of Chicago, 99 C 710 (N.D. Il.).
Wednesday, November 5, 2008
Septuagenarian Gives Birth to Twins Via IVF!
While browsing websites this afternoon, I stumbled across an article from this summer (July 24, 2008) that actually went as far as to shock my conscience. Thus, I decided to throw it out here, because I’d love to see what kind of reactions this piece evokes from everyone else.
In July, Omkari Panwar gave birth to twins, a boy and a girl, at a hospital in India via in vitro fertilization. What is newsworthy about this? What shocked my conscience? Mrs. Panwar is 70 years old, and her husband is in his mid-seventies. The article, which can be found at: http://www.msnbc.msn.com/id/25837220, goes on to discuss the origins of in vitro fertilization (IVF), but for the purposes of this blog, if your curiosity is piqued, you can read about the origins in the original article, for I am not going to address that here. What the article deftly highlights, however, is how the fears associated with IVF have changed since its inception. Initially, there were worries that IVF would produce deformed babies and that it was unsafe. Today, the fears are an entirely different monster, as highlighted by Omkari Panwar’s story. When is IVF okay? Who decides? Should the child’s rights be factored into the decision? Should the parent’s motives?
Admittedly, the Panwars’ case has another layer to it. The Panwars sought to have additional children as septuagenarians due to the cultural bias in India that sons are better than daughters. It is not that the Panwars have had boys in the past; they have female daughters and even female grandchildren. But now they wanted a boy. While I try to view this in a light most favorable to Mrs. Panwar’s plight, and while I struggle to realize that the cultural value judgment placed on her shoulders must indeed be significant if she was ready to go through childbirth again at the old age of 70, I cannot feel anything but remorse for her newborn twins. Her children are likely to lose their parents anytime in the near future. And even if the Panwars are lucky enough to live extremely, extremely long lives, will they really truly be able to care for their children in 10 years? Maybe even in 5 years? Raising children is something that is exhausting for parents forty years younger than the Panwars. Can these stark facts really be outweighed by the fact that Mrs. Panwar’s culture emphasizes the value of male children? Resoundingly, I say it cannot. I am appalled at the selfishness of their decision.
So this gets back to my initial questions. Who should decide when IVF can be used? Is it entirely the right of the parents to decide? Should the doctors be in a position to refuse treatment to potential parents? And if so, under what circumstances? Can they look to the parents’ motives? This would place an immense burden on doctors to make value judgments about people and families. Is this fair? I think not. But I do think there needs to be some sort of check on the parents’ access to IVF, if only for very special cases like this one. Perhaps legislation is the best route (I think it’s the only feasible one) to restrict IVF from being used in certain cases. Defining the law would be incredibly difficult and would not doubt meet significant challenges (I can foresee the due process claims being filed already…), but does this situation not demand some sort of scrutiny? I think it does. This entire scenario just reinforced to me, the casual reader, how issues with new treatment, technology, and so on, evolve, and frankly, can become more troublesome than at the outset.
In July, Omkari Panwar gave birth to twins, a boy and a girl, at a hospital in India via in vitro fertilization. What is newsworthy about this? What shocked my conscience? Mrs. Panwar is 70 years old, and her husband is in his mid-seventies. The article, which can be found at: http://www.msnbc.msn.com/id/25837220, goes on to discuss the origins of in vitro fertilization (IVF), but for the purposes of this blog, if your curiosity is piqued, you can read about the origins in the original article, for I am not going to address that here. What the article deftly highlights, however, is how the fears associated with IVF have changed since its inception. Initially, there were worries that IVF would produce deformed babies and that it was unsafe. Today, the fears are an entirely different monster, as highlighted by Omkari Panwar’s story. When is IVF okay? Who decides? Should the child’s rights be factored into the decision? Should the parent’s motives?
Admittedly, the Panwars’ case has another layer to it. The Panwars sought to have additional children as septuagenarians due to the cultural bias in India that sons are better than daughters. It is not that the Panwars have had boys in the past; they have female daughters and even female grandchildren. But now they wanted a boy. While I try to view this in a light most favorable to Mrs. Panwar’s plight, and while I struggle to realize that the cultural value judgment placed on her shoulders must indeed be significant if she was ready to go through childbirth again at the old age of 70, I cannot feel anything but remorse for her newborn twins. Her children are likely to lose their parents anytime in the near future. And even if the Panwars are lucky enough to live extremely, extremely long lives, will they really truly be able to care for their children in 10 years? Maybe even in 5 years? Raising children is something that is exhausting for parents forty years younger than the Panwars. Can these stark facts really be outweighed by the fact that Mrs. Panwar’s culture emphasizes the value of male children? Resoundingly, I say it cannot. I am appalled at the selfishness of their decision.
So this gets back to my initial questions. Who should decide when IVF can be used? Is it entirely the right of the parents to decide? Should the doctors be in a position to refuse treatment to potential parents? And if so, under what circumstances? Can they look to the parents’ motives? This would place an immense burden on doctors to make value judgments about people and families. Is this fair? I think not. But I do think there needs to be some sort of check on the parents’ access to IVF, if only for very special cases like this one. Perhaps legislation is the best route (I think it’s the only feasible one) to restrict IVF from being used in certain cases. Defining the law would be incredibly difficult and would not doubt meet significant challenges (I can foresee the due process claims being filed already…), but does this situation not demand some sort of scrutiny? I think it does. This entire scenario just reinforced to me, the casual reader, how issues with new treatment, technology, and so on, evolve, and frankly, can become more troublesome than at the outset.
The Diving Bell and the Butterfly
Reading the case McKay v. Bergstedt reminded me of the movie The Diving Bell and the Butterfly, or Le Scaphandre et le papillon. It is the heartwrenching true story of French Elle editor-in-chief Jean-Dominique Bauby who, in 1995 at the age of 43, suffered a stroke from a cerebro-vascular accident that left him in a state of total paralysis, incapable of any verbal communication, in what is known in the medical community as "locked-in syndrome." Only his left eye wasn't paralyzed. His mental faculties totally intact as he lay motionless in his hospital bed, Bauby learned to communicate with the outside world using his left eyelid, the only part of his body over which he still had any control. During the next fourteen months, using a communication code developed by his therapist and his publisher's assistant, who transcribed this code, Bauby was able to compose, letter by letter, a memoir of his life struggle eloquently describing the aspects of his interior world, including the psychological torment of being trapped inside his body. Bauby died in 1997, two days after its publication. The movie, which is based off of Bauby's autobiography, was nominated for 4 Oscars, and won the Golden Globe for Best Foreign Language Picture and Best Director.
Immediately after watching this movie, all I could think about was the rights of mentally-competent quadriplegics. Throughout the movie, you grow to understand and feel Jean-Do's frustration, anger, and sadness as he lays in bed, unable to tell the nurse when he did and did not want to watch tv, unable to tell his children he loved them, constantly remembering his old life. He wanted to die. He repeatedly gave this sentiment, but everyone around him refused to let him give up his life. He eventually spent his days recounting his life story, but many people in his situation do not have this opportunity. It made me weigh the balance between desperately wanting to die because life has nothing more to offer, and using your days to be productive in whatever capacity you can. The world is a better place because of Bauby's memoir. The Diving Bell and the Butterfly is truly a piece of art. I believe a person has the right to choose when he or she can die, especially in such a solemn situation. However, general society usually begs to differ. It makes me wonder if the quadriplegic community should enlist help from the medical and legal communities to establish their rights in a formal manner.
Subscribe to:
Posts (Atom)