At Any Cost? A New Play About Prolonging Life Support

Starting next week, and coinciding with a major medical futility conference in Australia, is At Any Cost at the Ensemble Theatre.  A 2-minute video about the play is embedded below.  Here is the synposis:  "Des loves his wife Faith dearly, but she is gravely ill. The family must decide whether her intensive care treatment should be prolonged.  Des can’t bear to have any part in ending her life, but her three children vary sharply in their attitudes.  The power of modern medicine can prolong life but is there any point if the life prolonged is poor? The family conflict becomes intense, generating both dark humour and shock as devastating family secrets are inevitably revealed."





A press write-up about the play quotes the surgeon co-writer:  "three-quarters of the available health budget in Australia is spent on patients in the last six months of life and almost half is spent on the last month of life."  "Doctors can prolong life almost indefinitely for hundreds of thousands of taxpayer dollars, but should we?"

Decision in Rasouli - Ontario Doctors Must Use CCB

The Court of Appeal for Ontario has released its opinion in Rasouli v. Sunnybrook Health Sciences Center.

The appeals court has affirmed the March 2011 ruling of the Ontario Court of Justice.  That court held that Ontario providers must use the CCB to resolve intractable medical futility disputes.  Providers appealed that decision in hopes that they could unilaterally refuse inappropriate interventions without the consent of the patient, the surrogate, or through the CCB.

Covert Denials of Non-Beneficial Treatment in Sweden

The Swedish newspaper Expressen reports that physicians there often decide to withhold or withdraw life-sustaining treatment without consulting either the patient or surrogate.  Prevailing laws and regulations require consultation with the family.  But this fails to occur up to 50% of the time.  (HT: Stockholm News)  

While this happens in the United States too, there is legal risk in doing so.  There has been one consistent source of liability for unilateral refusals of life-sustaining treatment:  claims for intentional infliction of emotional distress when the refusal was done secretively or insensitively.  

Raising Medicare Eligibility from 65 to 67

U.S. Senators Lieberman and Coburn recently proposed raising the Medicare eligibility age from 65 to 67.  This would help save hundreds of millions of dollars.  





While this is obviously incredibly politically controversial, it is probably easier to cut eligibility than it is to cut benefits.  Richard Lamm recently wrote that "seniors have long expected Cadillac care for a moped premium."  Perhaps the Cadillac care will continue.  But fewer will get it.  And they will have to pay at least Subaru premiums.

Richard Lamm on End-of-Life Rationing

Writing in Sunday's Denver Post, former Colorado Governor Richard Lamm writes that "[r]ationing is the price an aging society must pay to prevent health care from crowding out all other public needs."  We should, Lamm argues, "shift our emphasis from quantity of life to the quality of life.  If we put death in perspective and use fewer desperate measures to extend life, we would free up money to spend on improving the quality of our lives."  

Lamm argues, among other things:

• No nation can escape weighing costs and benefits and setting limits on marginal care.


• No citizen can expect, in this time of technological marvels, public programs or insurance companies to pay for all the health care that modern medicine can provide.

"We can't allow everyone to attempt to buy immortality with public money."

Can rationing possibly be rational?

Lauren Vogel has just published the 17th in a series on end-of-life care in the Canadian Medical Association Journal.  This is a nice review of the growing professional and public conversation about health care rationing, especially of intensive care.  

Hospital Policy on Medical Futility — Does it Help in Conflict Resolution and Ensuring Good End-of-Life Care?

Singaporean neonatologist Roy Joseph has published a nice literature review in the January 2011 Annals Academy of Medicine Singapore.  The full text is freely available here.  Here is the abstract:

Introduction: This paper aimed to ascertain if hospital policy on medical futility helps in conflict resolution, and in ensuring good end-of-life care.

Materials and Methods: Literature on the subject published in the last 5 years was identified through Pubmed, and those with empirical data pertaining to the outcomes of interest were examined. A systematic analysis was not possible as papers varied greatly in aims, designs, outcomes and their measures. Instead, the outcomes of representative papers were described and discussed.

Results: There is a widespread use of policies and guidelines based on the concept of medical futility. Conflicts are rare and appear to arise primarily from the manner in which policies are implemented. End-of-life care appears to be improving as evidenced by a significant number of deaths occurring following: (i) discussions involving patient, family, healthcare team members; (ii) cessation of intensive care and (iii) cessation of institution of palliative care. Deaths are increasingly taking place in the presence of family and outside the intensive care wards. Finally, post mortem audit of processes and practices indicate (i) compliance but in a limited manner with policies and recommended guidelines, (ii) family satisfaction and (iii) identify areas where improvement in end-of-life (EOL) care can be effected. Key areas are in improving education of, communication with, and documentation by all stakeholders.

Conclusion: Hospital policies on medical futility have helped to resolve conflicts and improve end-of-life care. Prospective, multicentre and controlled trials will be useful in determining the value of specific interventions, obtaining generalisable data and facilitating implementation of better end-of-life care models.

Modernizing the Code of Medical Ethics

Last Monday, the delegates AMA Annual Meeting attended an open forum by the Council on Ethical and Judicial Affairs.  The topic of discussion was "At what point should physicians say “no” to their patients?"  

The delegates also discussed CEJA's project to modernize the AMA’s Code of Medical Ethics. “The Code needs to be user-friendly and organized in a way that you can put your finger on what you need, when you need it,” said Sharon Douglas, MD, who moderated the forum.

Patients over 80 Do Not Benefit from ICU

French researchers have found, in an observational prospective cohort study, that there was no benefit of ICU admission for very old patients (over 80 years old).  Researchers focused on long-term survival, than hospital survival, to investigate potential ICU benefit.  (Archives of Internal Medicine 171(12):1116-1117)

End-of-Life Decision Making and Care of the Dying Patient

Every two weeks, the American College of Chest Physicians issues a PCCSU (Pulmonary Critical Care Sleep Update).  Each one features timely, concise, diagnostic information on current pulmonary, critical care, and sleep medicine issues.  The second PCCSU in June 2011 is by Yale University Medical Critical Care Director Mark Siegel.  It is titled “End-of-Life Decision Making and Care of the Dying Patient."

The objective of his brief review is to highlight effective approaches to end-of-life decision making and palliative care in the ICU.  Here are his objectives:

• Explore the key ethical principles that underlie sound end-of-life decision making.


• Consider the key structural components necessary to implement effective triage policies.


• Discuss futility as a rationale for unilateral decisions to forgo life-sustaining therapy.


• Address common sources of conflict between ICU physicians and patients’ family members.


• Highlight key features of effective palliative care in the ICU setting.

NICE - New Quality Standard on End-of-Life Care

NICE has posted a 70-page draft quality standard on end-of-life care.  It will remain open for consultation through next month.

The Best Interest Standard: Keep or Abandon?

In the just-published Summer 2011 edition of The Journal of Clinical Ethics, Douglas Diekema wrote "Revisiting the Best Interest Standard: Uses and Misuses."  I wrote a response titled "The Best Interest Standard: Both Guide and Limit to Medical Decision Making on Behalf of Incapacitated Patients."  I have copied both abstracts below.

Diekema:  The best interest standard is the threshold most frequently employed by physicians and ethics consultants in challenging a parent’s refusal to provide consent for a child’s medical care. In this article, I will argue that the best interest standard has evolved to serve two different functions, and that these functions differ sufficiently that they require separate standards. While the best interest standard is appropriate for choosing among alternative treatment options for children, making recommendations to parents, and making decisions on behalf of a child when the legal decision makers are either unable to make a decision or are in dispute, a different standard is required for deciding when to seek state interference with parental decision-making authority. I will suggest that the harm principle provides a more appropriate threshold for determining when to seek state intervention than the best interest standard.

Pope:  In this issue of JCE, Douglas Diekema argues that the best interest standard (BIS) has been misemployed to serve two materially different functions. On the one hand, clinicians and parents use the BIS to recommend and to make treatment decisions on behalf of children. On the other hand, clinicians and state authorities use the BIS to determine when the government should interfere with parental decision-making authority. Diekema concedes that the BIS is appropriately used to “guide” parents in making medical treatment decisions for their children. But he argues that the BIS is inappropriately used as a “limiting” standard to determine when to override those decisions. Specifically, Diekema contends that the BIS “does not represent the best means for determining when one must turn to the state to limit parental action.” He argues that this limiting function should be served by the harm principle instead of by the BIS.

I contend that we should not reassign the BIS’s limiting function to the harm principle. In this article I make two arguments to support my position. First, the BIS has effectively served, and can serve, both guiding and limiting functions. Second, the harm principle would be an inadequate substitute. It cannot serve the limiting function as well as the more robust BIS.

Voluntarily Stopping Eating and Drinking

My article with Lindsey Anderson, "Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life," which I blogged about in October, was just published by the Widener Law Review: 17 Widener L. Rev. 363-428 (2011).

Streamlining the Process for Removing Life Support from Vegetative Patients

It is difficult to find precise figures, but experts believe there could be as many as 5,000 people in the UK living in a vegetative state, enduring what has been described as a "living death."  And because of advances in medical science, the figures are set to continue to grow.  

Unfortunately, there is evidence families are not routinely being told of all the options open to them.  And even when families have made an informed decision to withdraw treatment and allow their loved-one to die, the court process involved can be beset with lengthy delays.  (BBC News)

Professor Lynn Turner-Stokes is chair of a Royal College of Physicians working party which has been set up to review the issues around the diagnosis and care of vegetative patients.  The Royal College of Physicians' review began in May 2011, and is expected to last at least 18 months.

Betancourt to be Codified? No Futility Law in New Jersey

In last year's Betancourt v. Trinitas Hospital case, leading New Jersey medical associations asked the Appellate Division for permission to unilaterally withdraw life-sustaining treatment that providers deemed medically inappropriate.  The court refused to grant that permission, suggesting that such permission should instead be sought from the Legislature. The Court wrote:  "The issues presented are profound and universal in application.  They warrant thoughtful study and debate not in the context of overheated rhetoric in the battlefield of active litigation . . . but in thoughtful consideration by the Legislature . . . ." 

It does not look like the New Jersey Legislature will be granting any Texas-type safe harbors for unilaterally refusing non-beneficial treatment.  A few days ago, A.B.4098, an all-purpose default surrogate decision maker bill, was favorably reported out of committee.  Section 2(n) of that bill provides:

if a surrogate directs the provision of life-sustaining treatment for a patient, the denial of which in reasonable medical judgment would be likely to result in the patient’s death, a health care facility or health care professional that does not wish to provide that treatment shall comply with the surrogate's decision pending: transfer of the patient to a health care facility or health care professional willing to receive the patient; or a review of the matter by a court of competent jurisdiction

Offensive Medicine: Animated Video Cariacature of End-of-Life Medicine

A great deal of discussion of medical futility focuses on surrogates and on therapy given as a result of defensive medicine.  But the amount of non-beneficial treatment demanded by surrogates pales in comparison to the amount of unwanted interventions foisted onto patients by physicians.  



In other words, there is far more offensive medicine than defensive medicine.  This is colorfully illustrated in this seven-minute Xtranormal video.  [Hat Tip: Pallimed and Happy Hospitalist]

American Bar Association Resolution againt Overly Aggressive Treatment

Three years ago (here too), I proposed deterring overly aggressive end-of-life treatment through the increasingly-wielded False Claims Act.  I just noticed that, a few weeks ago, the ABA will be considering a similar Resolution at its August 2011 annual meeting in Toronto.  

The Resolution, earlier approved by the Commission on Law and Aging observes that "the threat of lawsuit does not adequately deter unwanted treatment."  The Resolution:

calls on the Centers for Medicare and Medicaid Services (CMS) to take preventive and corrective action in response to evidence that some institutional and individual health care providers are violating their obligations under the Medicare and Medicaid Conditions of Participation(CoPs), thwarting the treatment wishes expressed by terminally ill patients, and seeking reimbursement for these practices. Evidence suggests that this kind of violation of the CoPs are due to both providers’ and institutions’ belief that their legal obligations to provide the standard of care and honor the expressed wishes of patients may be ignored without jeopardizing federal reimbursement for services provided contrary to patient wishes.

Recommendations for Appropriate Use of Critical Care Services

Three Ontario critical care specialists have published "Multi-Professional Recommendations for Access and Utilization of Critical Care Services: Towards Consistency in Practice and Ethical Decision-Making Processes" in the latest issue of the Journal of Law, Medicine, and Ethics (also here).  



The brief abstract states:  "Multi-professional guidelines for fair access to and use of adult critical care services are desperately needed to define a consistent transparent standard of care: when such therapies have the potential to benefit and help a patient as they journey with illness and when they cannot."  The authors claim that their recommendations for appropriate use of critical care services "are the first of their kind in that they seek to respond to the challenging day to day decision-making dilemmas faces by front-line clinicians."

Advance Directive Registries

A recent DHHS study reported that "between 65% and 76% of physicians whose patients had an AD were unaware of its existence."  This lack of availability exacerbates the already too-low completion rate.  One way to address the availability issue is through AD registries.  In a forthcoming article titled “The Advance Directive Registry or Lockbox: A Model Proposal and Call to Legislative Action.”in the JOURNAL OF LEGISLATION, Capital Law School Professor Joseph Karl Grant reviews and evaluates registry legislation.  Here is the abstract: 

In times of need, what portal or place could we go to easily retrieve a person’s advance directives when we have need to employ and use them? Well, a handful of states have come up with a solution. Nevada, Washington, and Vermont now have legislation in place that allows citizen’s of those states to digitally or electronically store their advance directives on the Internet, in a digital or electronic lockbox or portal of sorts. These states have addressed a critical need of their citizens: the need to have their advance directives accessible and readily available to health care providers so that their intent and wishes will be honored. 

This Article advocates that other states follow the lead of Nevada, Washington, and Vermont by adopting similar legislation and embracing digital or electronic technology by creating Internet “lockboxes” or registries, or portals where citizens can store their advance directives, and health care providers can access these advance directives in the most pressing and critical situations. 

Part One of this Article examines the rationale and need driving the creation of digital or electronic registries. Part Two of this Article lays out a model for the movement toward an advance directive for health care registry. Specifically, Part Two examines some of the pitfalls and shortcomings in existing legislation in Nevada, Washington, and Vermont. Additionally, Part Two sets forth model legislation that could be adopted by states wishing to legislatively create an advance directive for health care registry. Part Three explores who could administratively administer an advance directive for health care registry in the various states that decide to adopt the model legislation. Part Four addresses mechanisms and means to create the website or portal. Part Five explores the cost and expenses involved in building and maintaining the website or portal. Part Six explores demographic issues, namely who will use and benefit from an advance directive for health care registry. 

A Prerogative to Take Advantage of Everything in the Medical Armamentarium?

In yesterday's New York Times, Jane Brody writes about the New York Palliative Care Information Act.  This is basically a specialized informed consent obligation like that earlier enacted in California and more recently considered in Maryland and Arizona.  Unfortunately, such laws seem to be necessary.  

What caught my eye in the article was this statement:  "Even knowing these facts [about palliative options], some patients are likely to choose to take advantage of anything and everything in the medical armamentarium that could conceivably grant them extra days, weeks or months of life.  And such a choice is the prerogative of every terminally ill patient; the new law does not in any way deny that choice."  Well, the PCIA does not deny that choice.  But it is hardly clear that patients have that right under New York law.  

Hospital Ordered to Pay Damages for Providing Futile Medical Treatment

The Andalusian La Ley de Derechos y Garantías de la Dignidad de las Personas en el Proceso de la Muerte, since copied both by other provinces and currently by the Spanish federal government, provides penalties for engaging in "therapeutic obstinacy."  But I had not yet seen an example of sanctions for providing "futile" treatment.  

Now I have one.  A forthcoming article in La Revue de Médecine Légale describes a case in which a French hospital was ordered to pay damages for providing overly aggressive futile (obstinate) treatment to a hypoxic newborn.  Here is the abstract:  

On 2nd June 2009, Nîmes administrative court ordered Orange town hospital to pay damages for futile treatment. An apparently stillborn infant, who had suffered fromintrauterine hypoxia for 30 minutes was resuscitated after a further 25 minutes efforts. The child now suffers from serious disabilities. The jurisprudence: the maternal medical management was not found guilty. However, the judge considered the hospital was guilty of unreasonable obstinacy in saving the life of this child because the medical team could not be unaware of the serious neurological consequences of a long intrauterine hypoxia and because of the excessive duration of the resuscitation efforts. Comment: we will focus the discussion of this jurisprudence from a medico-legal and ethical point of view on four topics: the resuscitation efforts considered as excessively long whereas the starting of the resuscitation efforts was well-justified; inappropriately informing the parents of the death of their child, for which the judge found not guilty; the damages that will be paid to both parents and child, that is to say the indemnification of a disabled child for being in life, as in the Perruche affair in 2000; the difficulties of distinguishing between damage due to the unreasonable obstinacy to save his life, and the consequences due to his prior medical condition.  In conclusion, as a consequence of this jurisprudence, neonatologists may prefer not to resuscitate a child who has suffered from intrauterine hypoxia, in order not to be found responsible for any possible resulting disability, but with the risk of being charged of failure to render assistance to a person in danger. 

Money Drives Aggressive End-of-Life Treatment

On my summer reading list is Mark Rodwin's Conflicts of Interest and the Future of Medicine.  One specific manifestation of the broader problem is illustrated in an article in today's Pittsburgh Tribune-Review that discusses the role of money on end-of-life treatment.  "Hospitals and doctors make more money by aggressively treating terminal patients than by keeping them free of pain and letting them die with dignity."     

Dr. Gail Gazelle explained:  "It's impossible to remove money from the discussion because doctors are paid more to treat — not talk. . . .  "Physicians are reimbursed much, much, much, much less for actually communicating."  Dr. David Goodman similarly explained:  "Money is an unconscious influence that we as professionals can't pretend doesn't exist. . . .  It's like being in a slow-moving but powerful river, where the current is hard to overcome. You might not even be aware of it, but you can't deny that it's there."  

Videos Help Advance Care Planning

I espoused using video and interactive CD-ROM for advance care planning in this 1999 Health Matrix article.  This CBS Evening New story reports on their use and success. 

Launched June 1: End of Life Care Patient Charter

Today, the Royal College of General Practitioners (RCGP) launched a "Patient Charter" for the care of people nearing the end of their life.  The Charter represents an ideal of best practice that all patients should be able to expect from their GP and Primary Health Care Team.  Here are the promises in the Charter:

We want to offer people who are nearing the end of their life the highest quality of care and support. We wish to help you live as well as you can, for as long as you can. Therefore, if and when you want us to, we will:
• Listen to your wishes about the remainder of your life, including your final days and hours, answer as best we can any questions that you have and provide you with the information that you feel you need.
• Help you think ahead so as to identify the choices that you may face, assist you to record your decisions and do our best to ensure that your wishes are fulfilled, wherever possible, by all those who offer you care and support.
• Talk with you and the people who are important to you about your future needs. We will do this as often as you feel the need, so that you can all understand and prepare for everything that is likely to happen.
• Endeavor to ensure clear written communication of your needs and wishes to those who offer you care and support both within and outside of our surgery hours.
• Do our utmost to ensure that your remaining days and nights are as comfortable as possible, and that you receive all the particular specialist care and emotional and spiritual support that you need.
• Do all we can to help you preserve your independence, dignity and sense of personal control throughout the course of your illness.
• Support the people who are important to you, both as you approach the end of your life and during their bereavement.