AHRQ: Consider Cost But Do Not Limit Coverage

At its April 3rd meeting, the National Advisory Council of the Agency for Healthcare Research and Quality said that the cost of drugs and devices should be considered when researching comparative effectiveness, but cost should not be used to deny or limit coverage.  

The Council apparently wants to focus primarily on clinical outcomes and consider cost as a much less weighty factor.  Apparently, AHRQ is too nice to be NICE.

Rationing - Rational v. Emotional

The Buckeye Surgeon observes that "rationing will play a larger and larger role. Given our technology and the rapid rate of innovation . . . [a]t some point we will have to draw lines in the sand; enough is enough. . . . "

"I've been an advocate for rationing myself, having experienced first-hand the wasted effort and financial drain of providing futile care to elderly patients in the ICU who aren't really 'sick' but are actually just going through the dying process." 

"I mean seriously, hemodialysis on a 95 year old demented lady? It's crazy, right? . . . No one in their right mind would disagree that the redistribution of resources from the provision of futile care to the elderly in order to make more preventative and life-saving care available for younger people is a solid moral stance. But then you see the consequences. These are real people who will have to be told 'no more'. . . ."

Proposed Amendment to the Texas Advance Directives Act

Late last month, two bills that aim to amend the unilateral refusal provisions of the Texas Advance Directives Act were sent to committee.  H.B. 2964 is authored by Rep. Garnet Coleman.  H.B. 3325 is authored by Rep. Bryan Hughes.  If enacted, each bill would take effect Sept. 1, 2009.

H.B. 2964 is the more moderate bill.  It:

• Excepts ANH from the sorts of treatments that can be unilaterally refused if it is the only LSMT being provided
• Appoints a patient liasion to assist the patient/surrogate through the process
• Extends the transfer period from 10 to 14 days

H.B. 3325, on the other hand, proposes dramatic changes.  It:

• Allows the patient/surrogate to have legal counsel at the HEC meeting
• Removes the 10 day period, effectively requiring treatment until transfer
• Specifically authorizes no-fee judicial review of the physician's or HEC's decision

I think some features of each bill should be adopted to make the process more fair and thorough.  But ANH should not be treated specially.  And if judicial review is allowed, the standard of review should be carefully defined to mirror that in peer review and the business judgment rule.

Everybody Dies -- at Least Once

I just watched Ghost Town this week.  It is a great comedy and I am definitely going to use a few clips in my Health Law I class this fall --- so students can identify all the legal errors.  Basically, Bertram Pincus (played by Ricky Gervais), had a colonoscopy and can now see ghosts walking around New York.  He assumes the explanation is that something unusual occurred during his procedure.  In this clip, he confronts the surgeon, who (with the hospital lawyer) explains to Bertram that he "died for seven minutes."

Causes of Futility Disputes

A forthcoming article in Chest by a group of San Francisco researchers identifies four reasons that surrogates are reluctant or unwilling to “believe physicians’ futility predictions”:

1.  Skepticism about physician’s ability to achieve prognostic certainty 2.  A need to see for themselves that a patient was incapable of recovery 3.  A need to triangulate multiple information sources 4.  A belief that God could intervene to change the course of an illness

Notably, one-third of participants elected to continue treatment with less than a 1% survival estimate.  And nearly twenty percent of surrogates elected to continue treatment when the physician felt that there was a zero chance of survival.  Usefully, the authors correlate these surrogates with those motivated by a belief in miracles.  (Other recent studies also found a prevalent belief in miracles.)

The authors rightly stress the “importance of understanding the true nature of the surrogates’ skepticism about futility” so that the most appropriate conflict resolution mechanism can be employed.   But while high quality communication from clinicians may often address the first three types of surrogate objections, it is unclear to me exactly whether (or how) “early involvement of pastoral care providers” addresses (or can address) the fourth type of objection.

The Price of Denial

The New York Times' New Old Age Blog summarizes a recent study in the Archives of Internal Medicine.

Patients with advanced cancer who reported having EOL conversations with physicians generally opted for comfort, or palliative, care at home or in a hospice.  This had several significant benefits:

• Less physican distress and a better quality of death;
• Significantly lower health care costs in their final week of life; and
• As much (and sometimes more) time at the end-of-life as those never talked about their end-of-life (and were likely to be resuscitated, intubated or put in intensive care)

Two Weeks to National Healthcare Decisions Day

Today marks two weeks to National Healthcare Decisions Day! 

It's not too late to get involved.  Participants can use the free resources here.  And confirm your participation, so you can get the latest news, and so the national organizers can get due media credit.  Confirming participation is easy here.

Finally, consider joining the American Health Lawyer Association's April 8 (1-2pm, Eastern) teleconference on advance directives.  The cost is only $30 (and CLE is available for lawyers).  Furthermore, by signing up, you will receive a copy of AHLA's brand new educational video on advance directives.  For more information go here.

Culpably Unfaithful Surrogates

It is one thing for surrogates to demand end-of-life treatment that health care providers deem medically inappropriate.  It is quite another for providers to accede to those demands and actually provide the inappropriate treatment.  Why do they do that?  Unfortunately, several recent surveys suggest that such conduct is driven largely by legal concerns.

In A Nurse's Story, Toronto critical care nurse Tilda Shalof, describes how the relatives of an elderly man refused to take him off life support even after finding maggots on his body.  

During lucid moments, the patient had jotted heart-wrenching notes: "Let me go. I've had enough. Enough already. I want to die." His family members refused to pull the plug.

The Technology of Dying

The Kingston Ontario (Canada) Whig reports that the Canadian Institutes of Health Research has awarded a $900,000 grant to investigate the role that technology should play in death.

Dr. Daren Heyland, a critical care specialist at Kingston General Hospital and the lead researcher, said "I see all sorts of unkind things being done to patients who are really dying."  Sophisticated medical technology has created a dilemma for physicians and for families by leading them to believe that people can -- and should -- "live forever."  "There's a lot of moral distress about torturing elderly patients inappropriately." Heyland estimates that 20 to 30% of elderly people placed on life support suffered needlessly.

"People who have studied this and documented it have found that 50% of patients on life support experience significant pain and discomfort."  Heyland says it's time to "step back and ask: Is this really what you want at the end of your life?"  The research project will involve 800 elderly men and women admitted to intensive care units in 20 Canadian communities. The patients will be tracked for 12 months.

Palliative Care Grand Rounds

Volume One, issue 3 of Palliative Care Grand Rounds is now available at The Good Death.

PCGR has been described as "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."  This month, at The Good Death, you "will find an overview of what's been happening in the cyberworld regarding palliative care, death, dying, end-of-life care, and all sorts of related topics for the past month."

The next edition of Palliative Care Grand Rounds will be hosted right here at Medical Futility Blog on May 6th, the first Wednesday of the month.  In June, it will be hosted at the About.com Palliative Care Blog.

Fostering a Good Death

Having earned a reputation for the place that has fewer good deaths than most anywhere else in the United States, New Jersey is holding yet another conference on how to Foster a Good Death.  

Like last year's SOJEA (Southern Jersey Ethics Alliance) May conference, this one will also be held at Richard Stockton College outside Atlantic City.

The conference is scheduled for all day May 12, 2009.  

Medical Futility Blog on Wordle

Surrogate Selection: An Increasingly Viable Solution to Intractable Futility Disputes

This month I am working to make substantial progress on Surrogate Selection: An Increasingly Viable Solution to Intractable Futility Disputes.  Here is the working abstract:  (also in PDF)

This article reviews the strengths and weaknesses of “surrogate selection” as a solution to intractable futility disputes. While surrogate selection is an increasingly viable solution, it is only a partial solution because it is sometimes difficult or impossible to demonstrate that a surrogate demanding aggressive end-of-life treatment is not fulfilling her duties to the patient. Many states have been developing new legislative solutions to intractable medical futility disputes. In Texas, for example, when health care providers and patients’ surrogates cannot agree on appropriate treatment, the state Advance Directives Act permits a hospital ethics committee to adjudicate. The Idaho Senate has recently passed a bill to do the same thing. And North Carolina, Connecticut, and Wisconsin have been, or are, considering similar legislation.

But Harvard Medical School Professor Robert Truog argues that this sort of internal dispute resolution legislation is unnecessary and dangerous. Current laws in every state already give health care providers a mechanism to avoid providing inappropriate medicine demanded by surrogates. When a surrogate demands treatment that health care providers deem medically inappropriate, these laws often permit providers to secure a new surrogate from whom consent can be obtained. In short, a surrogate is the patient’s agent and, as such, must act according to the patient’s instructions, known preferences, and best interests. When a surrogate exceeds the scope of her authority, she can and should be replaced.

For example, providers took a surrogate shopping approach in the notorious Helga Wanglie case. Rather than ask the court to determine appropriate treatment, providers instead asked the court to appoint a guardian who would accede to the providers’ recommendations. While providers were ultimately unsuccessful in both Wanglie and other cases during the early 1990s, surrogate selection has, more recently, proven to be a successful approach. In a string of published cases in 2008 and 2009, courts have replaced patients’ surrogates because they were demanding inappropriately aggressive end-of-life treatment.  

But while surrogate selection has become increasingly well-grounded in both statutory standards and judicial precedent, it is only a partial solution to intractable futility disputes. To replace a surrogate requires evidence of a contradiction between the surrogate’s decision and the patient’s instructions, known preferences, and best interests. But providers will frequently have insufficient (or zero) evidence of the patient’s wishes and be unable to demonstrate any such contradiction. In other cases, such as Golubchuk, patient’s wishes will be in harmony with surrogate decisions. So, while Professor Truog is right to endorse surrogate selection as a solution to intractable futility disputes, we must still develop internal dispute resolution mechanisms to handle those remaining disputes in which providers conflict with irreplaceable surrogates.

It's Really about the Patient, Bobby Schindler

Bobby Schindler,marking the fourth anniversary of his sister's, Terri Schiavo's death, wrote yesterday:  "A health care system whose mode of medical ethics has shifted from a life-preserving “do no harm” approach to a cost/benefit analysis that essentially identifies who is and who isnot  'worthy' of treatment only makes matters worse."

Surely Mr. Schindler is not speaking of his sister's case.  The result in that case was based on Florida law that protected Terri's autonomy.  Multiple courts determined that clear and convincing evidence demonstrated that she would not want to be dependent on a feeding tube.  The Schindlers testified that they were not interested in protecting Terri's autonomy.  Consequently, they never had a chance of being appointed as guardians.

So, is Mr. Schindler speaking of unilateral refusal laws?  He does spend a few paragraphs discussing those laws.  But there is virtually zero evidence that the passage of such laws was motivated by financial concerns.  Nor is there any evidence that the implementation of such laws is being influenced or motivated by money.  

Again, these laws are used primarily to protect patients -- to protect them from pain, from suffering, from dying where they did not want to die, from being a burden to their family, from exhausting their financial resources.