DHHS Seeks Dementia Patient for Advisory Council on Alzheimer's Research, Care, and Services

HHS is soliciting nominations for a new, non-federal member of the Advisory Council on Alzheimer's Research, Care, and Services. Specifically, the position is for someone with a diagnosis of Alzheimer's disease or a related dementia. 

Nominations should include the nominee's contact information (current mailing address, e-mail address, and telephone number) and current curriculum vitae or resume. Nominations submitted within the past 6 months for other positions on the Advisory Council on Alzheimer's Research, Care, and Services will be considered for this position.



Submit nominations by email or FedEx or UPS before COB on June 14, 2013. Nominations should be sent to:

Helen Lamont, Ph.D 

HHS Office of the Assistant Secretary for Planning and Evaluation 

Room 424E, Humphrey Building 

200 Independence Avenue, SW 

Washington DC, 20201

Helen.Lamont@hhs.gov

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Unilateral Medical Decision Making in Australia and New Zealand

In an article forthcoming in the Journal of Law and Medicine, Lindy Willmott, Benjamin White, and Jocelyn Downie examine the law in Australia and New Zealand that governs the withholding and withdrawal of ‘futile’ life-sustaining treatment.  



The authors concluded that the general legal position is that doctors are able to determine unilaterally when treatment is futile and so need not be provided. This is either because futile treatment is not in a person’s best interests or because not providing such treatment does not breach the criminal law. They note, though, that the position in New Zealand appears less certain given conflicting judicial statements about the need for family consent.

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Defending Disability Discrimination

My latest blog post for AJOB's bioethics.net, "Defending Disability Discrimination," is available here.

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World Federation of Right to Die Societies - 2014 Conference

The World Federation of Right to Die Societies will hold its 20th conference from September 17-21, 2014 in Chicago.  



The theme is "Dignity, Choice, Control around the World."  The Conference will highlight the universality of the death with dignity movement and the vitality of member organizations around the world.  



The tentative schedule includes:

• Solutions for the elderly seeking a peaceful death 


• New Zealand’s proposal for an advance directive permitting voluntary euthanasia 


• New organization in Hong Kong – will that lead to progress in China? 


• Japan: an aged society with no option for refusing treatment 


• After the court decision: What’s happening in Columbia?


• Canada: a wide variety of bold approaches


• NuTech: progress and dilemmas


• Why Switzerland has 5 aid in dying organizations, including 3 that work with foreigners


• The Netherlands: the most progressive country 


• Doctors and how they want to die 

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Therapeutic Obstinacy in an Intensive Care Unit: Perspectives from Doctors and Nurses

It appears that the medical futility debate in Brazil looks much like that in the United States.  I just read this article by Karla Cristiane Oliveira Silva and colleagues called "Therapeutic Obstinacy in an Intensive Care Unit: Perspectives from Doctors and Nurses" (2012 Escola Anna Nery Revista de Enfermagem 16(4): 697-703) (PDF here).

Here is the abstract:

Therapeutic obstinacy is not a sufficiently studied theme in Brazil, especially on the nursing field. This study aimed to understand the social representations of doctors and nurses, about the excessive investment regarding the terminal patient in an Adult Intensive Care Unit. It is a qualitative, exploratory and descriptive research, founded on Social Representations Theory. Data was collected through focused interviews and participant observation and was interpreted through content analysis. The selection of five nurses and eight doctors to give interviews was carried out for convenience, considering their working shifts. It is possible to conclude that such professionals build their social representations about therapeutic obstinacy, having as a starting point the obstinate requests of the terminal patient's family members to carry out futile measures; difficulties regarding decision making and absence of criteria concerning the limits of investment, as well as the fear of ethical and legal repercussions related to the decisions made.

Here are my favorite excerpts:

If the family is very stubborn, we accept their opinion and do not take a stand. But we know that will end up prolonging the suffering of the patient.

Family members . . . push professionals to invest, unnecessarily in the healing process, the latter in turn, opt for the easy way to please the family instead of working with him on the understanding and acceptance of patient's condition. 

Professionals who joined this research consider the lack of transparency in the Brazilian legislation contributes to the health professionals introduce useless therapies.

The ambiguities of Brazilian law regarding the limits of the therapeutic effort contribute significantly to how doctors and nurses are positioned on the use or not of measures of life support.

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Parents' Conscience vs. Clinician Conscience

Philadelphia prosecutors have charged Herbert and Catherine Schaible with 3rd degree murder after their son Brandon died when the parents turned to faith healing instead of medicine for highly treatable problems.  This is typical in these cases, because the parents exceed the scope of their discretion to determine best interests.  



Interestingly, it seems that in some states a clinician could act on her conscience based objection.  That refusal might similarly lead to the child's death.  But unlike the parents, the clinician would be statutorily immune from criminal and other sanctions.

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Medical Futility: A Cross-National Study

This summer, World Scientific Publishing will release Iranian physician-bioethicist Alireza Bagheri's new book, Medical Futility: A Cross-National Study (Sept. 2013) (300pp).   



Most of the current books (e.g. Schneiderman & Jecker 2011) on medical futility focus on the United States. This book provides extensive international perspectives, allowing healthcare professionals to see how different countries approach the issue of medical futility and their experiences in dealing with this issue.  Here is the table of contents:

• So-Called Futile Care: The Experience of the United States


• The Reality of Medical Futility in Brazil


• Medical Futility and End-of-the-Life Issues in Belgium


• The Concept of Medical Futility in Venezuela


• Medical Futility in the Russian Federation


• Medical Futility in Australia


• Medical Futility in Japan


• Ethical Issues and Policy in Medical Futility in China


• Medical Futility in Korea


• Medical Futility from the Swiss Perspective


• Medical Futility in Turkey


• Medical Futility in the United Arab Emirates


• Medical Futility in Iran

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New CCB Futility Dispute: Rodrigues v. Sunnybrook

The Toronto Star reports on yet another futility dispute (the fifth by their count) at Sunnybrook Health Sciences Centre.  It was recently heard by the Ontario Consent & Capacity Board.  Joaquim Silva Rodrigues has been at the Sunnybook ICU since August 2012.



After he was diagnosed with progressive supranuclear palsy two years ago, 73-year-old Rodrigues repeatedly told his family that he wanted to live. "Don’t let me die.  Stop it from progressing. . . . If that doesn’t work, don’t let them kill me."  Rodrigues said that he would rather suffer and remain in the company of his family than surrender to an unwanted death.  That is what his wife and son have demanded on his behalf from his physicians at Sunnybrook.



But on May 14, without the consent of his family, Rodrigues’ physicians placed a note in his chart saying he has "no reasonable hope of recovery or improvement" and that they have decided to withhold mechanical ventilation in the event of a medical emergency requiring life-saving treatment.  Clinicians determined that Rodrigues has "no chances of recovery."  "There’s no clear benefit in prolonging life when you cannot tell whether the life that’s being prolonged is actually worth living for. . . . We’re prolonging life for suffering and pain."

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Council of Europe Seeks Input on Medical Futility Guidelines

The Council of Europe Committee on Bioethics has released for public consultation its "Draft Guide Concerning the Decision-making Process Regarding Medical Treatment in End-of-Life Situations."  The following sections are particularly relevant to medical futility.



27. The implementation or continuation of any treatment requires a medical indication.

However, other aspects must be taken into account when assessing whether a form of 

treatment is appropriate in view of the particular situation of the patient concerned. The 

issues that need to be addressed are as follows:

- the benefits, risks and drawbacks of medical treatment depending on the anticipated effects on the patient’s health;

- their appraisal in view of the expectations of the person concerned. This results 

in an assessment of the “overall benefit”, which takes account of the benefit in terms not only of the results of the treatment of the illness or the symptoms but 

also of the patient’s quality of life, psychological and spiritual well-being, etc. 



28. In some cases, this appraisal leads to the conclusion that the treatment is disproportionate when the risks and/or the scale of the constraints and the resources required to implement it are compared with the anticipated benefits. In this case, the doctor is justified in not implementing it or withdrawing it. In English-speaking countries in particular, the treatment concerned in such cases is described as “futile”. 



29. There is no obvious means that would apply to all individual situations, of measuring 

whether treatment is disproportionate. Even though there are medical criteria (from 

evidence-based medicine) to evaluate risks and benefits, which make it possible to 

assess whether treatment is proportionate, the suitability of treatment will always be 

assessed in the light of the patient’s situation as a whole. The answer to this question 

derives from the relationship of trust between doctors, carers and patients. In many 

cases, the disproportionate nature of treatment will tend to be defined according to the 

development of the illness and the patient’s reaction to the treatment, which will 

determine whether the medical indication needs to be called into question. In other 

circumstances, it is in the course of the discussion between doctors, carers and patients 

about the purpose and the expected benefits and potential risks of treatment that a 

possible disproportionality may emerge.



30. When, in a given situation, the treatment that is being contemplated or implemented 

will not yield or no longer yields any benefits, or is regarded as being clearly 

disproportionate, beginning or continuing to implement it can be described as 

“therapeutic obstinacy” (or unreasonable obstinacy). Doctors faced with such situations 

have a duty not to implement treatment or to withdraw it.



31. In end-of-life situations, assessing “overall benefit” has a key part to play in 

determining the suitability of treatment whose purpose may change (shifting from a 

curative to a palliative purpose for example). The prolonging of life must not in itself be 

the sole aim of medical practice, which should attempt just as much to relieve suffering. 

The difficulty of any medical decision at the end of life is that of ensuring that the 

patient’s dignity is respected and that the balance is struck between the protection of life 

and the person’s right to be relieved of suffering if possible

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Michigan Medical Good Faith Provisions Act - Passes Senate & House

Earlier this week, the Michigan House passed S.B. 165.  It looks like the bill is now on its way to Michigan Governor Rick Snyder.  



As I have explained elsewhere (e.g. here), this legislation does not really change hospitals' legal obligations.  The PSDA already requires almost every U.S. hospital to disclose its futility / non-beneficial treatment policies. 



Here are the provisions of the Michigan bill.  Oddly, it looks like it only applies to patients and guardians but not to agents or surrogates:



SEC. 20401. THIS PART SHALL BE KNOWN AND MAY BE CITED AS THE "MEDICAL GOOD-FAITH PROVISIONS ACT".



SEC. 20403. (1) UPON THE REQUEST OF A PATIENT OR RESIDENT OR A PROSPECTIVE PATIENT OR RESIDENT, A HEALTH FACILITY OR AGENCY SHALL DISCLOSE IN WRITING ANY POLICIES RELATED TO A PATIENT OR RESIDENT OR THE SERVICES A PATIENT OR RESIDENT MAY RECEIVE INVOLVING LIFE-SUSTAINING OR NON-BENEFICIAL TREATMENT WITHIN THAT HEALTH FACILITY OR AGENCY.



(2) IF THE PATIENT OR RESIDENT OR PROSPECTIVE PATIENT OR RESIDENT IS A MINOR [OR WARD], THE HEALTH FACILITY OR AGENCY SHALL [UPON REQUEST] PROVIDE IN WRITING THE POLICIES DESCRIBED IN SUBSECTION (1) TO A PARENT OR LEGAL GUARDIAN OF THE PATIENT OR RESIDENT OR PROSPECTIVE PATIENT OR RESIDENT.



SEC. 20405. THIS PART DOES NOT REQUIRE A HEALTH FACILITY OR AGENCY TO ESTABLISH OR MAINTAIN A POLICY DESCRIBED IN SECTION 20403 THAT IS NOT ALREADY REQUIRED BY FEDERAL OR STATE LAW ON THE EFFECTIVE DATE OF THIS PART.

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ICU Variability in Decisions to Limit Life Sustaining Therapies

Yesterday, at the ATS, Caroline M. Quill, MD, a fellow in Penn's department of Pulmonary, Allergy, and Critical Care at Penn Medicine, presented (and here) "Variation Among ICUs In Decisions To Limit Life Sustaining Therapies."



Quill's team found substantial variation in decisions to forgo life-sustaining therapies rates among 153 ICUs in the United States.  This suggests that many factors unrelated to the patient or family may be affecting such decisions.  Patient factors such as severity of illness, age, race, and functional status explain a significant amount of the variability in decisions.  But ICU culture and physician practices also play a major role.  



Quill's study revealed a six-fold variation among ICUs in the probability of a decision to forgo life-sustaining therapy. This suggests that the ICU to which a given patient is admitted influences his or her odds of having a decision for stop life-sustaining treatment, regardless of personal or clinical characteristics. 

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Hospice and the Triple Crown

Orb won the Kentucky Derby earlier this month.  But on Saturday, while heavily favored, Orb was handily defeated at the Preakness Stakes.  Again this year, there is no Triple Crown winner.





While horse racing has not seen a Triple Crown in 35 years, hospice regularly achieve its own triple crown.  Indeed, it is almost too good to be true.  But it is true.  Hospice helps patients (1) live longer, (2) experience a better quality of life, (3) and save Medicare and family dollars.

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Is there Room for Conscientious Objection in Critical Care Medicine?

Tomorrow morning from 8:15 to 10:45 a.m., at the Philadelphia Convention Center, I will be participating on an ATS panel titled "Is there Room for Conscientious Objection in Critical Care Medicine?" 

8:15 AM - Welcome and Symposium Overview

M. Lewis-Newby, MD, MPH 



8:25 AM - Reasons for and against Accommodating Conscience-Based Objections in the ICU

M. Wicclair, PhD  



8:50 AM - How the Law Applies to Conscience-Based Objections in the ICU

T.M. Pope, JD, PhD  



9:10 AM - Are Clinicians at Risk of Moral Harm in the Provision of Critical Care Medicine?

C. Rushton, PhD, RN 



9:35 AM - Special Case: When ICU Clinicians Morally Object to “Futile” Care

D.B. White, MD  



10:00 AM - ATS Recommendations for Managing Conscience-Based Objections in The Intensive Care Unit

M. Lewis-Newby, MD, MPH  



10:20 AM - Panel Discussion: Summarizing Reasons for and against Accomodating CBOs

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Catholic Medical Association White Paper on POLST

The Catholic Medical Association (CMA) has just published a 35-page White Paper on POLST in the May issue of the Linacre Quarterly.

The CMA White Paper is titled “The POLST Paradigm and Form: Facts and Analysis.”  It reviews the origin and stated goals of the POLST program, and analyzes a wide range of arguments favoring or opposing POLST.  The White Paper also examines whether the POLST paradigm will provide real solutions to challenges faced by patients and families trying to make good decisions regarding end-of-life care.



Most notably, the CMA White Paper identifies some significant problems posed by POLST, and makes practical recommendations about how to promote decision-making for vulnerable patients that is medically and ethically sound, and consistent with the Catholic Church’s teachings on respect for human life.

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Choosing Wisely - Top 7 List in Critical Care Medicine

This morning, at the ATS conference in Philadelphia, Scott Halpern, MD, PhD, MBE, presented "Top Ways to Reduce Low Value Care in Pulmonary and Critical Care Medicine."  Halpern leads the ATS's Choosing Wisely Task Force. 



"Choosing Wisely is designed to have physicians take the high ground in reining in the costs of their practices versus leaving that in the hands of external policymakers. . . .  There are a lot of diagnostic tests and therapies for which available evidence suggests a lack of effectiveness, and physicians are in the best position to determine exactly which practices in their own specialties fit that bill." 



Choosing Wisely Top 7 List in Critical Care Medicine:

1. Don't order diagnostic tests at regular intervals (e.g., daily), but rather in response to specific clinical questions.


2. Don't transfuse red blood cells in hemodynamically stable, non-bleeding ICU patients with a hemoglobin concentration greater than 7 mg/dL.


3. Don't use parenteral nutrition in adequately nourished critically ill patients within the first seven days of an ICU stay.


4. Don't deeply sedate mechanically ventilated patients without specific indications, and do attempt to lighten sedation daily.


5. Don't continue life support for patients at high risk for death or impaired functional recovery without offering patients and their families the alternative of care focused entirely on comfort.


6. Do not initiate or continue antimicrobial agents without specifying an evidence-based duration or endpoint and reassessing daily whether to narrow the spectrum of coverage based on cultures and clinical response.


7. Do not place or maintain arterial and central venous catheters in critically ill patients without specific indications.

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Texas Medical Futility - No Change Again

For the past four legislative sessions in Texas (2007, 209, 2011, and now 2013), a broad group of stakeholders has sought to revise Texas Health & Safety Code 166.046.  

Some want to make the law more fair (.e.g. longer notice periods).  That is what S.B. 303 would have done.  Others, like Texas Right to Life want to completely repeal provisions allowing clinician to unilaterally refuse life-sustaining treatment.  

Unfortunately, it looks like these two opposing forces have again canceled out.  It looks like no bills to amend TADA will advance.  

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Oklahoma Requires Provision of Futile Treatment

Many states are working to find ways to permit or encourage clinicians to avoid providing non-beneficial treatment.  In contrast, Oklahoma has specifically mandated that clinicians provide non-beneficial treatment, if that is what the patient's surrogate wants.  



I blogged about the Oklahoma law here.  I posted a copy of the law here.  Elsewhere, I have explained that Oklahoma's Nondiscrimination in Treatment Act makes Oklahoma a "red light" state as far as medical futility disputes.  I am pleased to see some more press coverage, indeed informed quality coverage, of this new law.

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Patients Wins Lawsuit against VA for Terminal Misdiagnosis

Sometimes, one is delighted to find out that one's physician has made an error.  That is what happened to Mark Templin.  Clinicians at the Montana VA misdiagnosed him with brain cancer.  They prescribed two drugs and ordered hospice care.





Templin believed he was dying.  So, he quit his job, sold his pickup truck, celebrated a "last" birthday, and bought a prearranged funeral service.  He even contemplated suicide. Templin testified that he cried often and considered shooting himself so his family wouldn't have to watch him wither away.



But Templin then started feeling better.  He terminated hospice care. Additional testing showed multiple small strokes, but no brain cancer.



The U.S. District Court for the District of Montana awarded Templin $60,000.  The judge explained:  "It is difficult to put a price tag on the anguish of a man wrongly convinced of his impending death. . . .  Mr. Templin lived for 148 days ... under the mistaken impression that he was dying of metastatic brain cancer."  The judge awarded $500 per day for the initial period of severe mental and emotional distress and $300 per day for the latter period until Templin received his new diagnosis. He also ordered the VA to repay Templin for the cost of the birthday party and funeral. 



This type of case is rare.  But it certainly fosters end-of-life conflict, because it illustrates the limits of prognostication.  "Why should I accept your recommendation for CMO?  Maybe I am another Mark Templin."  This type of case also fosters opposition to AID.  Oddly, Templin considered "shooting" himself, even though, in Montana, AID is legal.  But through either mechanism he would have proceeded on a false assumption.

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Eight Advance Care Planning Lessons that Took Me 30 Years to Learn

Charlie Sabatino, director of the ABA Commission on Law and Aging since 1984, has a new article in the Senior Lawyers Division magazine EXPERIENCE, titled "Eight Advance Care Planning Lessons that Took Me 30 Years to Learn."  While full text is for members only, here are the subheadings of the 8 lessons:

1. Most Advance Directives Aren't Worth the Paper on Which They Are Written


2. The Only Real Legal Task of Advance Care Planning Is Appointing and Informing a Healthcare Agent


3. Ambivalence Is Our Middle Name


4. Advance Care Planning Has Stages


5. The Best Trait in a Healthcare Agent A Drive to Relentlessly Research


6. An Advance Directive Does Not Equal a Plan of Care


7. Good Advance Care Planning Requires More Than Just Better Education--It Requires System Change


8. Lawyers Will Continue to Have an Important, Though Changed, Role in Advance Care Planning

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Nurses Use Extreme Treatments For Patients; Less Agressive Options on Themselves

A new study in the International
Nursing Review compares
nurses' end-of-life treatment preferences in Hong Kong, Ireland, Israel, Italy
and the USA.  Nurses in every country consistently chose a more aggressive
option for patients than for themselves. 

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Texas Bishop Supports Texas Medical Futility Bill

KFDA - NewsChannel 10 / Amarillo News, Weather, Sports

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Court Holds Restrictive Swiss Aid-in-Dying Law Violates Human Rights

When it rains it pours.  In addition to the news out of Vermont, today the European Court of Human Rights issued its opinion in the case of Gross v. Switzerland.  



Alda Gross has no known pathological condition or clinical illness.  But she contends that she has the right to assisted suicide because she’s a frail elderly woman and has no desire to continue life.  Swiss authorities refused to provide Gross with a lethal dose of a drug in order to commit suicide.   



After exhausting her remedies in the Swiss courts, in November 2010, Gross alleged a violation of Article 8 (right to respect for private and family life) of the European Convention on Human Rights.  



The Court held that Swiss law was in violation of the Convention, because it is not clear enough as to when assisted suicide was permitted.  Swiss law lacks sufficient guidelines ensuring clarity as to the extent of the right to aid-in-dying.  This lack of clarity is likely to have a chilling effect on doctors who would otherwise be inclined to provide someone such as Gross with the requested medical prescription.

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Lawsuit for Resuscitating Patient against Her Wishes

A month ago, I blogged about Marjorie Mangiaruca's daughter's lawsuit against a Florida hospital and nursing home for resuscitating her mother against her wishes.  I also included this case in my 83-page analysis of unwanted treatment.  



Yesterday, the local Fox television station ran this report on the case.

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Minnesota Supreme Court Hears Arguments on Constitutionality of Assisted Suicide Statute

Minnesota has one of the nation's broadest statutory prohibitions of "aiding suicide."  The statute includes not just "assisting" but also "encouraging" or even "advising."  This broad scope could sweep in counseling and education on end-of-life options.   



Yesterday, the state Supreme Court heard oral arguments in a case challenging the constitutionality of these broad prohibitions under the First Amendment.  A video of the arguments is available here.  

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Vermont Enacts Aid-in-Dying Legislation

Vermont has become the fourth U.S. state to affirmatively legalize aid-in-dying.  (Vermont House Journal) (USA Today)

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Legal Briefing: Patient Self Determination Act

I just finished my latest “Legal Briefing” column for the Journal of Clinical Ethics.  (I can't believe this is my already my fifth year.)  This one covers recent legal developments involving the Patient Self Determination Act (PSDA).  



Enacted in the wake of the U.S. Supreme Court’s Cruzan decision in 1990, the PSDA remains a seminal event in the development of U.S. bioethics public policy.  But the PSDA has long been criticized as inadequate and ineffective.  Finally, recent legislative and regulatory changes promise to revitalize and rejuvenate the law.  I categorize new legal developments concerning the PSDA into the following seven sections:



1.  Background and History

2.  Rules and Requirements

3.  Criticism and Challenges

4.  Failed Efforts to Amend the PSDA

5.  Personalize Your Care Act of 2013

6.  New Regulations and Guidance

7.  Expanded Enforcement

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Kaiser Sued for Denying Futile Treatment

Jalal Afshar was receiving cancer-related treatment at Kaiser Permanente's Los Angeles Medical Center. Doctors there gave him a mix of chemotherapy drugs similar to what some outside specialists had used.  But Kaiser's treatment didn't improve his condition.  (LA Times)



Eventually, Afshar's condition deteriorated, and Kaiser's doctors said there was nothing more they could do.  Afshar said they sent a chaplain to his hospital room to discuss his plans for dying at home.  "The doctor came in and said, 'It's time for you to go home and have hospice care.'"



Afshar did not accept this.  He sought treatment from an out-of-network specialist.  And his disease is largely in check now, though he suffers fatigue and some numbness in his legs. 



Cases like this foster significant prognostic mistrust and financial mistrust among patients and families, leading to conflict.  On the other hand, Kaiser and other plans must have the ability to deny coverage for expensive treatments that are very unlikely to be effective.  



I have posted a copy of Afshar's Los Angeles Superior Court complaint here.  It appears this was not employer-provided coverage, so the claim will not be preempted by ERISA like some other famous Los Angeles coverage cases (e.g. Sarkisyan).

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Today's Hearing on S.B. 303 to Amend Texas Futility Law

S.B. 303 passed the Texas Senate on April 18.  It was referred to the House Public Health Committee on April 22.  Today, that committee is holding its first hearing on the bill.  The Committee is chaired by Lois Kolkhorst.  



While S.B. 303 does not fix all the due process deficiencies with Texas Health & Safety Code 166.046, it does offer some material improvements.  Hopefully, the bill will make it to the House floor for a vote.  As I learned yesterday, even some cheesecake is better than none.  

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Videos Help Patients Align Treatment and Preferences

At a 1990 Senate finance subcommittee hearing on the Patient Self Determination Act, Senator Danforth testified: "I think that if many people were shown video tapes 10 years before of how they are going to spend the last months of their lives, they would have said, 'Please, do not let this happen to me.'"



More than two decades later, Senator Danforth has been proven right.  Patients shown advance care planning videos better appreciate their options and opt for less aggressive treatment.  

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Risk of Abuse to the Few Does Not Justify Limiting Liberty of the Many

One leading argument in opposition to the legalization of aid-in-dying is the risk that some might be pressured to, or otherwise involuntarily or non-voluntarily, hasten their deaths.  But all the available evidence indicates that this is a very, very small risk.  Moreover, it is one that can be mitigated through tested safeguards far less restrictive and liberty-limiting than an outright ban.  



I am reminded of Representative Brian J. Donnelly (D-Mass.).  He was one of the few opponents to the Patient Self Determination Act of 1990.  The PSDA had little opposition, because it created no controversial substantive rights.  It only obligates providers to inform patients of their already existing rights under state regarding advance directives.  But Representative Donnelly feared that health care providers might pressure poor people to sign advance directives as a means to discontinue treatment.  



Donnelly's fear never materialized.  Fortunately, the mere prospect of abuse was not enough to defeat the education of more than 100 million patients.  Similarly, it now seems that the mere prospect of AID abuse to the few is increasingly weakening as a ground to defeat the liberty of many others to have more control at the end of their lives.

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Vermont to Legalize Aid-in-Dying

It is exciting to be in Vermont this week.  I am in Burlington.  But just down the road in Montpelier, the State legislature is poised to become the first in the United States to affirmatively authorize physician aid-in-dying.  (Washington and Oregon were by referendum.  Montana was by court decision and Medical Board rules.)  



I am looking across Lake Champlain into New York.  I am reminded that it was there, 20 years ago, that the case against Timothy Quill began.  Later, in 1997, Quill lost that case when the Supreme Court upheld New York's prohibition of assisted suicide.  Now, with solid data from Oregon and elsewhere, the tide sure seems to be turning - both here, in other states, and in Canada.

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NEW Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life

The Hastings Center has published a revised and expanded second edition of its Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life.  This major new work updates and significantly expands The Hastings Center's 1987 Guidelin

es on the Termination of Life-Sustaining Treatment and Care of the Dying. 



Like its predecessor, this second edition will shape the ethical and legal framework for decision-making on treatment and end-of-life care in the United States.  This groundbreaking work incorporates 25 years of research and innovation in clinical care, law, and policy.  It is written for physicians, nurses, and other health care professionals and is structured for easy reference in difficult clinical situations.  It supports the work of clinical ethicists, ethics committee members, health lawyers, clinical educators, scholars, and policymakers. It includes extensive practical recommendations.



Here is the Table of Contents:







Introduction



The Function and Sources of These Ethics Guidelines

Legal and Ethical Consensus Informing These Guidelines: Rights, Protections, and Key Philosophical Distinctions



Part One: Framework and Context

Section 1: Ethics Goals for Good Care When Patients Face Decisions about Life-Sustaining Treatment or Approach the End of Life

Section 2: Ethics Education Competencies for Health Care Professionals Caring for Patients Facing Decisions about Life-Sustaining Treatment and Patients Approaching the End of Life

Section 3: Organizational Systems Supporting Good Care and Ethical Practice

Section 4: Social, Economic, and Legal Contexts

A. Social Context

B. Economic Context

C. State and Federal Context



Part Two: Guidelines on Care Planning and Decision-Making

Section 1: Guidelines for Advance Care Planning and Advance Directives: Using Patient Preferences to Establish Goals of Care and Develop the Care Plan

Section 2: Guidelines for the Decision-Making Process

A. Evaluating the Patient

B. Determining Decision-Making Capacity

C. Identifying the Key Decision-Maker

D. Surrogate Decision-Making

E. Making the Decision at Hand

F. Documenting the Decision

G. Implementing the Decision

H. Changing Treatment Decisions

I. Conflict and Challenges Related to Treatment Decision-Making

Section 3: Guidelines Concerning Neonates, Infants, Children, and Adolescents

A. General Guidelines for Pediatric Decision-Making Concerning the Use of Life-Sustaining Treatments

B. Guidelines for Decision-Making and Care Involving Nonviable Neonates and Neonates at the Threshold of Viability

C. Guidelines for Decision-Making about Life-Sustaining Treatment for Viable Neonates

D. Guidelines for Decision-Making about Life-Sustaining Treatment for Young Children

E. Guidelines for Decision-Making with Older Children

F. Guidelines for Decision-Making with Adolescents

G. Guidelines for Decision-Making by Mature Minors and Emancipated Minors

Section 4: Guidelines for Care Transitions

A. General Guidelines for Hand-Offs between Professionals and Transfers across Care Settings

B. Guidelines on Care Transitions for Nursing Home Residents

C. Guidelines on Portable Medical Orders

D. Guidelines on Discharge Planning and Collaboration with Nursing Homes, Home Care, Hospice, and Outpatient Care

E. Guidelines on Care Transitions for Patients Who Will Die in the Hospital

Section 5: Guidelines for the Determination of Death

A. Procedural Guidelines for Making a Determination of Death and for Making a Declaration of Death

B. The Determination of Death: Continuing Ethical Debates 

Section 6: Guidelines for Institutional Policy

A. Guidelines on Ethics Services in Institutions Providing Care for Patients Facing Decisions about Life-Sustaining Treatment or Approaching the End of Life

B. Guidelines on Palliative Care Services

C. Guidelines Supporting Advance Care Planning

D. Guidelines Supporting Portable Medical Orders

E. Guidelines Supporting Care Transitions

F. Guidelines on the Role of Institutional Legal Counsel and Risk Management in Supporting Good Care

G. Guidelines on Conflict Resolution



Part Three: Communication Supporting Decision-Making and Care

Section 1: Communication with Patients, Surrogates, and Loved Ones

A. Conducting a Family Conference When a Patient's Condition Is Deteriorating

B. Supporting the Decision-Maker When Loved Ones Disagree

C. Discussing Values Concerning Nutrition and Hydration

D. Using Electronic and Telephone Communications with Seriously Ill Patients or with Surrogates and Loved Ones

Section 2: Communication and Collaboration with Patients with Disabilities

A. Life-Sustaining Treatments and Accommodation of Stable or Progressive Disabilities

B. Communication When a Patient's Disability Affects Speech

C. Communication When a Patient's Disability Affects Cognition

D. Communication and Collaboration with Recently Disabled Patients Concerning Life-Sustaining Treatments

Section 3: Psychological Dimensions of Decision-Making about Life-Sustaining Treatment and Care Near the End of Life

A. Coping as a Factor in Treatment Decision-Making

B. Hope as a Factor in Treatment Decision-Making

C. Ambivalence, Denial, and Grief as Factors in Treatment Decision-Making

D. Existential Suffering as a Factor in Treatment Decision-Making

E. Spirituality and Religion as Factors in Treatment Decision-Making

F. Religious Objections during Treatment Decision-Making

G. Moral Distress as a Factor in Treatment Decision-Making

H. Integrating Bereavement Care for Loved Ones and Professionals into Care Near the End of Life

Section 4: Decision-Making Concerning Specific Treatments and Technologies

A. Forgoing Life-Sustaining Treatments: Ethical and Practical Considerations for Clinicians

B. Brain Injuries and Neurological States

C. Mechanical Ventilation

D. Cardiopulmonary Resuscitation and Cardiac Treatments

E. Dialysis

F. Nutrition and Hydration

G. Chemotherapy and Other Cancer Treatments

H. Routine Medications, Antibiotics, and Invasive Procedures

I. Blood Transfusion and Blood Products

J. Palliative Sedation

Section 5: Institutional Discussion Guide on Resource Allocation and the Cost of Care

A. Developing a Practice of Discussing Resource Allocation and the Cost of Care: Six Strategies

B. Discussing Uncompensated Care for Patients without Insurance



Glossary

Cited Legal Authorities

Selected Bibliography

Index

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How Not to Die - Revolutionizing End-of-Life Care

Angelo Volandes is exploring the role of visual media in medical decision making.  He is lending his expertise to efforts surrounding advance care planning. One of his research questions is determining whether, as part of the ACP process, patients can realistically imagine future health states which include difficult and uncomfortable hypothetical scenarios. Volandes' work was profiled in this recent, inspirational 7-page article in THE ATLANTIC.  



This sort of research (on patient decision aids) is one of the most exciting developments in bioethics and health law:  the material improvement of informed consent.  Because patients do not truly understand their prognosis and options, they choose far more aggressive interventions than they would had they been better informed.  



Angelo Volandes thinks this is "the most urgent issue facing America today, is people getting medical interventions that, if they were more informed, they would not want. It happens all the time.”  Volandes believes that his videos can disrupt the way the medical system handles late-life care, and that the system urgently needs disrupting.  I too have called attention to the problem of unwanted treatment (in this forthcoming 83-page article).  I hope that the evolving legal response can work in tandem with proven clinical improvements like those developed and tested by Volandes.

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Ethics vs. Legality of Deactivating Cardiovascular Implantable Electronic Devices

A colleague suggested that my blog post about Lars Noah's new article on deactivating CIEDs lacked an important piece of context.  



While Noah may be right that the legal literature has neglected the issue, the issue of deactivating cardiac devices was thoroughly addressed in a set of authoritative guidelines published in 2010.  Rachel Lampert et al., "HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in Patients Nearing End of Life or Requesting Withdrawal of Therapy, 7 HeartRhythm 1008 (2010).  In short, failure to respect a patient wish to deactivate(or at least refer to a willing clinician) is outside standard of care and unacceptable violation of patient autonomy.



Noah, of course, acknowledges the Consensus Statement:



After fifteen years of debate in the medical literature, the views of those defending the ethics of CIED deactivation secured official endorsement in 2010. The Heart Rhythm Society (HRS), along with half a dozen other professional groups (including the American College of Cardiology and the American Heart Association), produced a “consensus statement” covering the subject, with several of the individuals who previously had penned defenses of deactivation listed as co-authors.



The Report emphasized the importance of improving dialogue about the question between physicians and their patients. Viewing the matter as no different than requests to withdraw other forms of life-sustaining treatment, buttressed by the previously described points about causation and intent, the HRS consensus statement concluded as follows: “Deactivation of a CIED, whether a pacemaker, ICD or other device is not assisted suicide or euthanasia and is ethically and legally permissible.”



In spite of the mildly remarkable confidence expressed in the report, an ethical consensus in favor of the practice informs but ultimately cannot settle questions about its legality.

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Legality of Deactivating Implanted Cardiac-Assist Devices

Lars Noah addresses an increasingly relevant issue that has been largely neglected by legal academics.  In "Turn the Beat Around?: Deactivating Implanted Cardiac-Assist Devices," Noah observes that with the growing utilization of pacemakers, ICDs, and LVADs, physicians increasingly encounter patients who ask that their still-functioning devices get turned off.  



Noah notes that most medical ethicists equate deactivation with the permissible withdrawals of other (typically external) interventions.  But Noah argues that implanted cardiac-assist devices pose serious challenges to the well-accepted equivalence between initially refusing and later requesting the withdrawal of life-sustaining treatments. In order to eliminate residual uncertainties about the lawfulness of this peculiar form of physician-aid-in-dying, he recommends legislative attention to the problem.

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Writing Policies on End-of-Life Treatment

I am delighted to transition, this month, from writing scholarship to writing policy.  

Hopefully, one's scholarship informs the development of professional, institutional, and public policies.  (I am always delighted to get messages confirming that it does.)  But that is an indirect path to improving health outcomes.  It is particularly rewarding to participate more directly in developing policies.

Coming up for me in the next few weeks are meetings regarding:

• American Thoracic Society Policy Statement: Managing Conscience-Based Objections in Intensive Care Medicine


• An official ATS/AACN/ACCP/ESICM/SCCM Statement: Responding to Requests for Futile and Inappropriate Treatments in Intensive Care Units


• Legislative Guide: Top Twelve POLST Legal and Regulatory Issues

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