Lauren Richardson

In November 2008, Lauren Richardson’s mother decided to “join cooperatively with Richardson’s father to care for their daughter and to drop her court request to remove Richardson’s feeding tube and water.”  (ADF press release)  I criticized this result because the Chancery Court had already found that clear and convincing evidence showed Lauren would not have wanted to continue treatment.

A few days ago, ADF attorney Matt Bowman devoted much of an article over at Breakpoint to attacking my response to the outcome in the Richardson case.  Much of the attack is ad hominem, and I will not bother responding to that.  

But on the merits of the case, Bowman observes that "Lauren never signed any form wishing to be starved to death."  That is true.  But most people never complete an advance directive.Still, their surrogates proceed to withdraw all forms of life-sustaining medical treatment. Here, the Delaware Chancery Court heard the testimony of several witnesses and concluded that there was "clear and convincing evidence" that Lauren would not have wanted to persist in a permanent vegetative state.  Bowman charges that I "seek to impose death without consent."  Quite the contrary, it is the ADF and Lauren's parents that are imposing treatment without consent.  I want to protect Lauren's autonomy and her rights under Delaware law.

Bowman says that I am wrong that Delaware law allows patients to be killed against a family’s unanimous wishes.  But it surely does, as Bowman himself goes on to recognize in his own article.  That is why he cautions that "Delaware statutes are therefore in urgent need of amendment."  Bowman states that Lauren's "current care plan was signed by her parents, a Delaware Chancery Court judge, and an independent court-appointed attorney."  While I do not access to muc of the docket, I assume this is true.  But that does not make the settlement decision right under Delaware law.  

The focus of guardianship proceedings pertaining to medical treatment is on what the patient herself would have wanted.  Here, that was determined and then promtly ignored.

Enforceability of Advance Directives

It appears to be near impossible to get an advance directive effectuated in Italy.

In contrast, on Friday the Maryland Court of Special Appeals held, in Stouffer v. Reid, that a prisoner with end-stage renal disease had the right to refuse dialysis.  None of the state's asserted rights were compelling enough to outweigh the prisoner's right to refuse.  

Unfortunately, the case seems wrongly decided.  The court mentions at least four separate times that the patient did not even believe that he had kidney disease.  The court observed that the prisoner was "ill-informed"and had "concerns . . . regardig appellee's understanding of his condition."  In other words, while the patient may have been legally "competent," it looks like he did not have the capacity to make this particular decision.  The case looks a lot like Tennessee v. Mary Northern.

Nice New Primer on Medical Futility Ethics and Law

In a 2008 edition of the Northeast Florida Medicine Supplement (a publication of the Duval County Medical Society), Dr. Bruce McIntosh has a nice overview of the ethical and legal issues surrounding medical futility. It does not break any new theoretical and empiricial ground. But it is a clear, accurate, and precise introduction.

Society for the Prevention of Cruelty to Humans

In quite a few blog posts (example; example; example; example; example; example), I have analogized the end-of-life treatment of animals and human beings. 

Dr. Gifford-Jones proposes a Society for the Prevention of Cruelty to Humans. The name is wonderful, though he apparently intends only "an organization that would ask legislators to pass laws similar to those used in Holland and Switzerland where lethal injection is controlled and allowed." My impression is that Compassion & Choices is this organization.

Dr. Gifford-Jones has "often written that if [he] were allowed a committee to oversee [his] final hours, [he would] want a veterinarian to be part of that group." 

He is hoping that they would treat him the same way as Debbie, who was the world's oldest polar bear at Winnipeg's Assiniboine Park Zoo. Late last year (right before I happened to visit Winnipeg), due to a number of strokes, zoo keepers decided Debbie had suffered enough and painlessly ended her life.

An Advance Directive May (or May Not) Ensure Wishes Are Carried Out

Stories about the importance of advance care planning (ACP) are printed every day in mass media newspapers, magazines, and journals across the United States.  Earlier this week, the Orlando Sentinel ran a story titled, An Advance Directive Ensures a Person's Wishes Are Carried Out.

Those familiar with the literature know that this title makes a false promise.  Advance directives can increase the probability that wishes are carried out, but they can hardly "ensure" it.  

What surprised me was that the article explicitly recognized this limitation.  One of the FAQs is "What happens if my family doesn't want to follow my living will?"  The response:  "It depends.Hospitals may bow to the wishes of the family if they push strongly to continue life support."

Jack Kevorkian: "Let Doctors, not Legislators, Practice Medicine"

Jack Kevorkian has been hitting the lecture circuit in Florida.  Last month he was at the University of Florida.  Yesterday, he was at Nova Southeastern.

My favorite quote from Kevorkian:  "Today, the government - not the medical community - decides which health practices are acceptable.  You can't dictate medical procedures by law.  They change all the time."

My favorite quote from a commentator (Peg Sandeen, director of Death With Dignity):  "He illustrated some of the significant problems that can happen when this is not regulated."  (Miami Herald)

Respond to Risks Not Just to Disasters

For some time, the United States has been known around the world as one of the few countries with advanced reproductive technologies but hardly any legal regulation of those technologies.  Consequently, the United States has been a destination for women from China and India, for example, who want to undergo pre-implantation genetics diagnosis (PGD) to screen out female embryos.  Little regulation has been forthcoming.  The general defer-to-the-paying-patient position is summed up by Sean Tipton, spokesman for the American Society of Reproductive Medicine:  "A lot of people will say if you have six children, you already have enough. . . .  The problem is, who gets to make that determination?"   (Columbus Dispatch)

Now comes 33-year-old Nadya Suleman, a single mother with six children.  Ms. Suleman just had octuplets, some of whom are sure to have severe disabilities.  Such an intuitively obvious disaster prompts reflection on the current framework.  Arthur Caplan rightly states that it is "complete and utter nonsense that physicians say they won't police their patients. . . .  Medicine is not a restaurant, and doctors are not waiters.  They need to have some professional responsibility when it comes to patients."

Perhaps it will similarly take some sort of disaster to prompt change concerning end-of-life disputes.  

U.S. Doctors Refuse "Inappropriate" Surgery

Sheyla Hershey has undergone nine surgeries to get her current super sized figure of 38-KKK. 

And she's only 5 feet 3 inches tall.  Hershey says she going for another surgery latest this year, to make her breasts even bigger.

The Daily Star newspaper reports that she had to go to Brazil for her latest surgery because U.S. doctors refused to perform any more surgery on her.  (Daily Star)  

It is easy for providers to refuse demands for treatment that they judge inappropriate where they have not yet formed a treatment relationship with the (prospective) patient.  What makes futility disputes so difficult is that the treatment relationship has already been formed.  And it cannot be terminated in any of the legitimate methods (mutual agreement, patient consent, end of medical episode, notice and transfer) that would avoid liability for tortious abandonment.

Moral Distress - Doctors and Nurses Forced to Do the Wrong Thing

In yesterday's N.Y. Times, Pauline Chen writes that "Doctors and nurses 'feel trapped' . . . by the competing demands of administrators, insurance companies, lawyers, patients’ families and even one another. . . .  And they are forced to compromise on what they believe is right for patients.”

This is moral distress — "knowing what is ethically appropriate but being unable to act on it because of obstacles inherent in a situation."  While not discussed in Chen's article, a number of studies confirm that the biggest source of moral distress for both nurses and physicians is being forced (by the law) to provide inappropriate end-of-life care.

Mom Refuses Physician Recommendation to Turn off Life Support

The Sunday Mercury (Birmingham UK) includes a story about Debbie, a mother, whose son, Noah, was born with Edward's Syndrome (aka Trisomy 18), a disorder that meant he would probably die before his first birthday.  The survival rate of Edwards Syndrome is very low. About 95% die in utero. Of liveborn infants, only 50% live to 2 months, and only 5–10% will survive their first year of life. Noah was under 3 pounds at birth and providers encouraged her to turn off his life support machine.

Debbie refused.  She doubted the ability of providers to correctly prognosticate Noah's future.  Furthermore, she distrusted providers' recommendation because she had lost an earlier child due to medical malpractice.  "I had no faith in the medical service after what has happened before."  And Debbie encourages others to resist provider recommendations.  "I would advise any mum-to-be to trust her instincts.  You know how you feel, and you must be firm with the medical staff."

California Futility Case - Bernstein v. Sup. Ct.

Earlier this week, the California Court of Appeal issued a fantastic opinion affirming a Ventura County Superior Court Judge's resolution of a medical futility dispute.  Bernstein v. Superior Court of Ventural County (Feb. 2, 2009).

This was not a case the involved health care providers as a party to the dispute.  Rather, the dispute was between two brothers of a 79-year-old Alzheimer's patient.  One brother, Scot, had been the conservator.  But Scot had been demanding very aggressive care that offered the father no benefit and significant suffering.  Another brother, Ilya, wanted to (and successfully did) replace Scot as conservator.  

Quite a few health care providers testified on Ilya's behalf at trial.  They all thought that the treatments were "inappropriate" and "futile."  But they apparently had been providing (and were prepared to continue to provide) all the treatment that Scot demanded.  Why?  Because Scot has been threatening lawsuits.

The opinion recites quite a bit of detail from the history of the dispute, and illustrates to some degree: provider legal fear, the role of a bioethics committee, and how to meet the clear and convincing standard of evidence (though that was held not to be the required standard here).  There is one odd thing in the opinion.  The testimony was unanimous that the patient was in PVS.  But there was also substantial evidence that the patient was in pain.  I thought the two were (putting fMRI aside) mutually exclusive.

Palliative Care Grand Rounds

This month Pallimed is hosting the inaugural edition of Palliative Care Grand Rounds, a "monthly blog carnival bringing you the best and most interesting blog posts about hospice, palliative care, death and dying, grief, quality of life, communication in the medical arena, and anything else that strikes the fancy of the host that month."

Pope Benedict - Euthanasia Is "False Solution"

On Sunday, Pope Benedict XVI rejected euthanasia as a “false solution” to suffering.  The Catholic News Agency reports:

“Jesus suffered and died on the cross out of love. In this way, viewed properly, he gave meaning to our suffering, a meaning that men and women of every age have understood and made their own, experiencing profound serenity even in the bitterness of harsh physical and moral trials."

“’This power of life in suffering’ is the theme that the Italian bishops have chosen for their annual message on the occasion of today’s Day for Life. . . .  Euthanasia is a false solution to the drama of suffering, a solution that is not worthy of man. The real answer cannot be, in fact, to give death, as 'gentle' as this may be, but to testify to the love that helps us to face pain and agony in a humane way.”  “We can be certain of this: no tear, neither of those who suffer, nor of those close to them, will be lost before God."

For those who want to be good Catholics and "suffer," be sure to write very detailed advance directives so your health care facility will be comfortable honoring it without fear of violating Medicare Conditions of Participation, JC standards, and state law.

Arizona - following CA, MD with EOL Options Law

Arizona Senate Bill 1311, sponsored by Sen. Linda Lopez, D-Tucson, is modeled on the new California law dubbed "Right to Know." Among other things, Lopez's bill would require health-care providers to give patients:

• Prognosis with and without treatment targeting the disease.
• Hospice care and the option of pain and symptom management
• A patient's right to refuse or withdraw from life-sustaining treatment.
• A patient's right to continue pursuing disease-targeted treatment with or without continuing symptoms treatment
• A patient's right to comprehensive pain and symptom management at the end of life
• A patient's right to provide written health-care instructions and to appoint a legally recognized health-care decision maker

(Arizona Republic)  Hospice nurse Carolyn Lieder said that the medical community is capable of giving people a good death, but often tries to prolong life and inflicts unnecessary pain in the process.  "Too often doctors don't give you the information. You have to ask the questions . . . .  You have to ask the questions over and over and over again, until you understand."  Billie Stockl watched her husband go through agonizing months of chemotherapy and radiation. The couple was never told that her husband's cancer was terminal, but eventually a nurse suggested hospice care.  "I'd never heard of hospice," she said. "If we had been home with hospice, Lew's last months would have been very different."  (Arizona Guardian)

Palliative Care - Lessons from Vermont

Vermont Public Radio ran a story yesterday (available for download here) on palliative care.  Vermont is widely considered to have some of the best palliative care in the United States.  So, it is definitely worth listening to what they are doing and how they are doing it.

Studies show that a good ‘quality of life' is as important to people in the last days of their lives as it is throughout the rest of life. Most people say they'd rather die at home than in a hospital, yet in Vermont death occurs more commonly in a hospital or a nursing home than anywhere else.

Why the discrepancy between what people want and what actually happens? Lawmakers have been gathering answers to that question from the public, from caregivers and medical professionals. They've just released recommendations on palliative care, end of life care and pain management that they say are more cost effective and more humane.

VPR's Jane Lindholm talks with Senator Ginny Lyons, who co-chaired the Vermont study, Dr. Allan Ramsay, director of Palliatrive Care at Fletcher Allen Hospital and Diana Pierce, President of the Hospice and Palliative Care Council of Vermont about quality of life at the end of life . 

Euthanasia Blues - End Disability Discrimination

Wesley Smith has posted a clever and somewhat compelling music video, Euthanasia Blues.  It is a blues song from the perspective of those (especially the disabled like Tracy Lattimer) who might be subject to involuntary euthanasia for illegitimate reasons.  Smith often broadly attacks end-of-life mechanisms like PAS and unilateral withdrawal, even though such mechanisms can be invoked in justifiable circumstances.  Nevertheless, he (and this video) are correct to imply that such mechanisms can be (and are) sometimes illicitly employed. 

Maryland - following California on Mandatory EOL Disclosures

In January, Maryland took a step toward following California in enacting a law mandating certain disclosures concerning end-of-life treatment options. H.B. 30 would amend the state's Health Care Decisions Act to add a section on "Terminal Condition Care Counseling." "When a patient is diagnosed with a terminal condition, the Physician or surgeon making the diagnosis shall inform the patient that the patient may receive counseling regarding terminal condition care options that are available under the law." The counseling must include:

• Options regarding hospice care at home or in a Health care setting
• The right of the patient to refuse or withdraw from any life–sustaining procedure
• The right of the patient to continue to pursue curative treatment
• The right of the patient to receive comprehensive pain and symptom management at the end of life, including adequate pain medication, palliative chemotherapy, and other clinical treatments useful when a patient has a terminal condition
• The right of the patient to make a living will or advance directive

The counseling may also include:

• Discussions about the outcomes for the patient and the patient’s family, based on the interests of the patient
• A discussion of benefits and burdens of treatment options in a manner that the patient and the patient’s family can easily understand
• Information from organizations specializing in terminal condition care that provide information on fact sheets and internet websites to convey the information

Back from the Dead - Ken Kirby

On December 27^th, Officer Ken Kirby was declared legally dead. Today, he is back on patrol with the Seneca (SC) Police Department.

On the day of her Kirby’s heart attack, after getting the bad news, his wife walked into Kirby's room, “and they are still doing compressions and bagging just for [her] sake,” (SC Upstate Today) Amid the tears, the anguish, the explanations of what went wrong, something else was happening. A nurse had her fingers pinched on the dead man’s wrist. “I think I feel something.” Perhaps it was just the chest compressions or perhaps it was the nurse’s own pulse she was feeling. But after further tests -- 49 minutes after flat-lining – physicians found a tiny, almost negligible, but nonetheless present, heartbeat. Kirby’s system was flooded with blood thinners to the point his hair gained an orange tint and blood seeped out of his face. Kirby was then transferred to the Greenville Hospital System where a three-hour surgery successfully removed a blockage. Kirby credits divine intervention. He wants to give the Lord credit for it.