Medical Futility Blog Gets 250,000 Pageviews

Today is a milestone of sorts for the Medical Futility Blog.  Google Analytics tells me that this blog has just reached 250,000 pageviews.  

Read More

Hawkins v. DeKalb Medical Center (Update)

I first blogged about Hawkins v. DeKalb Medical Center over four years ago.  The Georgia defendants maintained the pregnant teen patient on life support until she delivered a baby.  Providers then confirmed that she was brain dead and stopped ICU interventions.   

The patient's grandmother sued the Georgia hospital for "tortuous termination of life support."  But she failed to factually dispute the defendants' contention that the teen was dead before the termination of life support.  Therefore, the Georgia Court of Appeals affirmed summary judgment in favor of the hospital.  Nevertheless, it looks like the plaintiff is seeking cert. to the Georgia Supreme Court.

Read More

Rasouli - Video Update

Patient in 'vegetative state' whose doctors had... by tvnportal

Read More

Medical Futility in Japan vs. North America

A new comparative survey of Japanese physicians and laypeople concerning judgments of futility is roughly consistent with similar Canadian and American studies.  Laypeople were nearly twice as likely to think continued treatment was appropriate.  For example, take a hypothetical case in which physicians determined that "there were no longer any agents anticipated effective" for a patient with advanced lung cancer and a life expectancy of several weeks.  If the patient requests another round of chemotherapy, 65% of laypeople say it should be administered, but only 33% of physicians.   

But there are some notable differences.  First, one figure that was way lower is that only 17% of respondents identified "avoidance of legal issue" as a reason for providing treatment judged futile.  That figure is substantially higher in Canadian and American studies.  Another difference is that more Japanese physicians think that they have a duty "to make an all-out effort to save a person's life, regardless of the condition, that that patients in irreversible comatose states should be valued and offered medical care unstintingly."  

Read More

Rasouli - No Longer in PVS

The Globe & Mail reports that Hassan Rasouli is no longer in a persistent vegetative state.  This could have a material impact on the pending Supreme Court of Canada case concerning whether physicians at Sunnybrook can stop his life support over his family's objections.




Until recently, Rasouli was diagnosed as being in a persistent vegetative state.  But an affidavit filed with the Supreme Court says he’s now "minimally conscious."  Doctors’ reports say Rasouli can “voluntarily control” certain behaviors – suggesting he may be aware but trapped in a paralyzed body.  Rasouli is “consistently able to show a ‘thumbs up’ ” to verbal requests.  And he has consistently shown visual pursuit, one of the earliest signs of MCS.




UPDATE:  I posted a copy of the affidavit here.

Read More

Dead Woman Delivers Twin Boys

Several weeks after being declared dead as the result of a burst brain aneurysm, Michigan resident Christine Bolden delivered (at 25-weeks) twin boys Alexander and Nicholas by Cesarean.  

Mother's death brings new life: woodtv.com

Read More

Vermont - Lack of Default Surrogates

Like Minnesota and a few other states, Vermont has no law authorizing "default" surrogate decision makers.  On the one hand, this leaves providers with the flexibility to identify and choose the best surrogate.  On the other hand, it leaves providers somewhat uncertain about their validity and safety of their choices.   New York's lack (until June 2010) of authorized default surrogate created even worse problems.  The long-standing problem in Vermont has bubbled to the surface as Vermont now aims to enact legislation authorizing POLST.

But the debate need not be framed in terms of (1) law or (2) no law.  Providers can have both flexibility and legal clarity.  One great model for this is the Tennessee Healthcare Decisions Act.  I discuss some others in Part 2 of my article on the unbefriended in the Journal of Clinical Ethics.  I also discuss the issue in this article in the NY State Bar Association Health Law Journal.

Read More

Steven Thorpe - Doctors Wrote-off as Dead, Now Leads Normal Life

Read More

Futility & Conscientious Objection - Free Video Conference

The theme of the University of Wisconsin School of Medicine and Public Health's Fourth Annual Bioethics Symposium, last Thursday, was "Doctors, Politics and Conscience."  Videos of the presentations are available here.

Read More

Denying the Need for Advance Care Planning

Planning A Spouse's Funeral Even Though They'll Probably Never Ever Die

Read More

Coming to Grips with End-of-Life Care

At the prestigious 2012 TEDMED conference, organizers identified fifty great challenges of health and medicine.  These are complex and persistent problems that affect great numbers of people.  Delegates voted on these challenges, narrowing them down to just twenty.  




One of the twenty (along with other challenges like "The Obesity Crisis," the "Impact of Poverty on Health," and "Addressing Healthcare Costs") is "Coming to Grips with End-of-Life Care."  Here is the description of this challenge: 

Modern medicine has extended the life expectancies of many terminally ill Americans. In turn, prolonging lives can mean incurring more intensive care and the associated costs.

In 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives. Quality end-of-life care requires balancing the input of doctors, families and patients themselves. And making crucial end-of-life decisions can take physical and emotional tolls on patients and their loved ones.

How should we help people manage end-of-life care choices to maximize individual well-being and minimize social cost?

It is worth noting the criteria to be included as a "Great Challenge."  These are all certainly satisfied by end-of-life care.

•  A Great Challenge is a problem that is big and wide-ranging in impact.


•  A Great Challenge is a problem that is a complex, medical-social issue.


•  A Great Challenge is a problem that is intractable by definition. Since it cannot be solved, it must be managed.


•  A Great Challenge is a problem that is virtually permanent.


•  A Great Challenge is a problem that is fundamental to the health and welfare of the U.S.


•  A Great Challenge ideally involves surprising, thought-provoking framing of an issue. It is “non-directive” and does not assume that a certain solution is “right” or “best” or even possible.

Read More

National Healthcare Decisions Day

In honor of National Healthcare Decisions Day (NHDD), April 16, I’m taking a break from blogging this week and spending my writing time with my loved ones.  I hope that this guest post, by Nathan Kottkamp, Founder and Chair of NHDD, will inspire you to think about the conversations we should all be having with our own loved ones about an uncomfortable but important topic – planning for when we die.



Are you one of the 80% of Americans who haven’t completed an Advanced Directive yet? We’ve all struggled with how to get started on this topic – and there are plenty of reasons why we resist:

• Fear


• Uncertainty 


• Not sure how to start 


• Don’t know what’s legally binding 


• Worried I’ll hurt someone’s feelings


• Just haven’t had the time to do it  

That’s why we recognize April 16 as National Healthcare Decisions Day (NHDD) – a movement designed to inspire, educate, and empower the public and providers about the importance of advance care planning.  Put another way, NHDD is a day for all adults to mark their calendars, have the talk, and document the talk with an advance directive.



Regardless of your own reasons not acting already, you might find your way to start the conversation by watching this awesome three and a half minute video at www.nhdd.org. It’s proof that it takes only a few minutes to start a conversation with your loved ones about advance care planning—a conversation that affects people for a lifetime.



After the goosebumps settle down from watching the video, here are some specific things you can do for NHDD:

• Lead by example.  Schedule time with your loved ones (on or before April 16) to “Have the Talk” and complete your own advance directive. There are many tools, including free forms, you can use to walk you through the process and make your wishes known; access them through the NHDD Public Resources page.


• Encourage your loved ones and friends to learn more about advance directives and to complete their advance directives. You can forward this link: www.nhdd.org. 


• Share your advance directive with your healthcare providers and make sure it is on file in the event it is needed. 

Already had the conversation with your loved ones, but want to do more?  Here a few suggestions to rally support for NHDD and encourage even more action:

• Like the NHDD Facebook fan page and share it with your Facebook friends


• On Twitter? Follow @NHDD and share the information with your followers, such as: Just 5 days to #NHDD, when will you have the talk? @NHDD can help: www.nhdd.org


• Share NHDD with your professional contacts on LinkedIn


• Send an email to your friends, staff, colleagues, lodge/social club members, and/or house of worship, telling them that you are participating in NHDD and encouraging them to do the same.  Share the information above with them and/or use this template email:


• April 16 is National Healthcare Decisions Day, and I hope that you will join me in taking this time to discuss and document your healthcare wishes.  We all need to be prepared in the event of a health crisis, and having the talk is easier than most people think, but many of us need a little inspiration or a reminder to do it.  I hope that this message and National Healthcare Decisions Day are all you need for inspiration.  Please mark your calendar for April 16 to have the talk with your loved ones.  There are all sorts of free resources, including free advance directive forms for each of the 50 states, on the NHDD website: www.nhdd.org.  Additionally, please help me spread the word with Twitter, Facebook, and LinkedIn.   Advance care planning is something we ALL should do and encourage others to do, regardless of age or current health.  Discussing your wishes can be one of the most important gifts you ever give your loved ones.


• Please use and share the resources available through the NHDD website and encourage and empower us all to make our healthcare decisions now for whenever they will need to be known.

Nathan Kottkamp

Founder and Chair

National Healthcare Decisions Day

Read More

Safe Haven Network of Vitalist Hospitals

The Terri Schiavo Life & Hope Network is developing a comprehensive directory of “Safe Haven” facilities which consists of hospitals, long term care facilities and other medical facilities where individuals can receive care and not be faced with the threat of having medical care, nutrition and hydration withheld.  




Schneiderman and Jecker recommended such a resource in Wrong Medicine.  And such a directory is mandated in section 166.053 of the Texas Advance Directives Act.  That registry is available here.

Read More

Over-treatment: Defensive vs. Offensive Medicine

Nancy Morden has a new article in Health Affairs that examines the association between hospital characteristics and eleven end-of-life care measures, such as hospice use and hospitalization.  Her study reveals a relatively high intensity of care in the last weeks of life.  At the same time, there was more than a twofold variation within hospital groups with common features, such as cancer center designation and for-profit status.  These hospital characteristics explained little of the observed variation in intensity of end-of-life cancer care and that none reliably predicted a specific pattern of care. These findings raise questions about what factors may be contributing to this variation.   




Is the law in part to blame?  Surrogate-driven over-treatment is often due to defensive medicine.  Here, physician-driven over-treatment is due to offensive medicine.  Morden demonstrates that financial incentives play a role. 

Read More

Helping Clients Produce Advance Directives That Work

If you will be near San Diego on May 4, be sure to attend this workshop.  



Most people know they should make an Advance Care Directive, yet many
do not. Why?  Here are two possible reasons.

1. They do not really understand
   the medical conditions and treatment choices. 


2. They are not convinced that
   completing these forms will be effective or even be available to clinicians
   when “that time comes”- if they no longer can speak for themselves. 

Dr. Stanley
Terman’s work over the past decade has strived to fulfill the promise of Advance
Directives. Briefly, Caring Advocates’ program makes Advance Care Panning easy,
effective, and comprehensive.

• Easy, so the program can be used by those who have low health
  literacy or who have already lost some cognitive functioning; for example, individuals
  who have mild cognitive impairment, early dementia, or clouded consciousness
  from high doses of pain-relieving medication. 


• Effective, so others WILL honor patients’ Last Wishes—both rapidly
  and with no, or minimal conflict.


• Comprehensive, to effectively reduce these two great end-of-life
  fears: unbearable, unending pain and suffering for days to weeks before dying,
  and being totally dependent and a enormous burden with no awareness of the
  sacrifice others are making while not being able to voice a complaint that they
  are in pain of suffering as they linger in Advanced Dementia for months to
  years.


• This workshop introduces a method to help your clients avoid such
  conditions so your clients can have peace of mind now that someday, their final
  transition will be timely and peaceful.

What are the Benefits?

1. Learn  how to help clients and their families  plan for a timely, peaceful transition — whether
   the diagnosis is Alzheimer’s, a related dementia, or another terminal illness.


2. Understand why “Natural
   Dying” can be a “compassionate choice” that respects the moral code of most
   (even conservative) religions.


3. Experience a direct, hands-on
   experience as you make a decision about each of the 48 symptoms, losses of
   function, unwanted behaviors, and conflicts with lifelong values—one at a time.
   Generate your own Natural Dying—Living Will. Learn about the various ways you
   can administer the illustrated “My Way Cards/ Natural Dying Living Will Cards”
   to your clients.


4. Learn what forms you can add
   to create an “ironclad strategy” to overcome a variety of challenges to Natural
   Dying so your clients can feel confident that others will honor their Known
   Wishes. Then, they will thus NOT need to consider premature dying to avoid
   future suffering and burdens in a state they would dread, if prolonged.


5. Offer this method to your
   past as well as your present clients—even if they have an Advance Directive—by
   learning how to evaluate the adequacy of their present forms to relieve pain
   and suffering and lingering in dementia. (Note: the Natural Dying—Living Will
   can be added to existing forms.) Be able to example the method’s great
   potential “return on investment”: Invest a modest amount of informed,
   structured, and diligent effort now to reduce a huge amount of suffering in the
   future.

Read More

Advance Directive of Darth Vader

A video made by University of Minnesota students.  

Read More

Extraordinary Measures to Save Gravely Ill Pets

With the availability of treatments like bone-marrow transplants and heart stents, it is now easy to spend $10,000 to $25,000 on medical procedures for a pet.  Knowing that many humans die of preventable illnesses, or even considering that many dogs and cats are euthanized in overcrowded animal shelters, can a person justify spending that much money to prolong one animal’s life?  If so, is it ethical to have a pet if you cannot afford such treatments?  Six expert debaters weigh in at the New York Times.

Read More

Can a Physician Write a DNR Order without Consent?

James Bernat, who has written one of the best books on medical ethics, has also just written a brief article in this week's Neurology Today.  He answers the question, "Can a neurologist write a DNR order on a terminally ill patient without consent?"

Read More

Idaho Anti-Futility Bill Signed into Law

Just a few years ago, Idaho was close to enacting Texas-style legislation permitting healthcare providers to refuse life-sustaining interventions that they deemed inappropriate.  This week, Idaho reversed course 180 degrees.  It has enacted legislation (here too) that directly prohibits providers from refusing requested life-sustaining treatment.  The following amendments are effective on July 1, 2012.



S.B.1348 adds a new section (3) to Idaho Code 39-4514:  

"Assisted feeding or artificial nutrition and hydration may not be withdrawn or denied if its provision is directed by a competent patient in accordance with section 39-4503, Idaho Code, by a patient's health care directive under section 39-4510, Idaho Code, or by a patient's surrogate decision maker in accordance with section 39-4504, Idaho Code. Health care other than assisted feeding or artificial nutrition and hydration may not be withdrawn or denied if its provision is directed by a competent patient in accordance with section 39-4503, Idaho Code, by a patient's health care directive under section 39-4510, Idaho Code, or by a patient's surrogate decision maker in accordance with section 39-4504, Idaho Code, unless such care would be futile care as defined in subsection (6) of this section. Except as specifically provided in chapters 3 and 4, title 66, Idaho Code, health care, assisted feeding or artificial nutrition and hydration, the denial of which is directed by a competent patient in accordance with section 39-4503, Idaho Code, by a patient's health care directive under section 39-4510, Idaho Code, or by a patient's surrogate decision maker in accordance with section 39-4504, Idaho Code, shall be withdrawn and denied in accordance with a valid directive. This subsection does not require provision of treatment to a patient if it would require denial of the same or similar treatment to another patient."





An amended section (6) defines "futile care" (should have stated "futile intervention") as a course of treatment:

"(a) For a patient with a terminal condition, for whom, in reasonable medical judgment, death is imminent within hours or at most a few days whether or not the medical treatment is provided and that in reasonable medical judgment will not improve the patient's condition; or

(b) The denial of which in reasonable medical judgment will not result in or hasten the patient's death."

Read More

Medical Futility Legislation in Minnesota

Yesterday afternoon, on the floor of the Minnesota Senate (around 3:30:00), Senator Nienow proposed amendment A33 to HF2294 (the Omnibus Health and Human Services Finance bill).  The proposed amendment would require hospitals to disclose a futility policy.  The amendment otherwise would not restrict either the existence or content of such policies.  The amendment was adopted, but must now go to conference, since it was not in the original house bill.

Read More

National Healthcare Decisions Day - Minnesota

Read More

Oklahoma Anti-Futility Legislation

Oklahoma has pending legislation titled the "Nondiscrimination in Treatment Act" (SB 1695).  This is very similar to pending Idaho legislation about which I have blogged several times.  The Idaho bill has passed both houses and is sitting on the governor's desk.  The Oklahoma bill has passed the Senate and has been passed out of the house public health committee.  





The purpose of the Oklahoma bill is to prohibit the denial of life-preserving health care services from a requesting patient on the basis of a view that extending the life of an elderly, disabled or terminally ill individual is of lower value than extending the life of someone who is younger, nondisabled or not terminally ill.





It also prohibits the denial of services on the basis of disagreement with how the patient or their representatives value the tradeoff between extending the length of the patient’s life and the risk of disability.  Affected patients or their representatives may maintain injunctive relief against a health care provider who violates or is about to violate these provisions.





The key language from the bill is the following:

A health care provider shall not deny to a patient a life-preserving health care service the provider provides to other patients, the provision of which is directed by the patient or a person authorized to make health care decisions for the patient: 

1. On the basis of a view that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than extending the life of an individual who is younger, non-disabled, or not terminally ill; or

2. On the basis of disagreement with how the patient or person authorized to make health care decisions for the patient values the tradeoff between extending the length of the patient's life and the risk of disability.

Read More

Choosing Wisely - EBM Recommendations to Avoid Waste

The ABIM Foundation's "Choosing Wisely" initiative has some implications for end-of-life interventions.  Basically, 9 U.S. specialty societies representing 374,000 physicians developed lists of "Five Things Physicians and Patients Should Question" in recognition of the importance of physician and patient conversations to improve care and eliminate unnecessary tests and procedures.  These lists represent specific, evidence-based recommendations physicians and patients should discuss to help make wise decisions about the most appropriate care based on their individual situation.  Here are two examples from the American Society of Nephrology's list:

• Don’t perform routine cancer screening for dialysis patients with limited life expectancies without signs or symptoms.  Due to high mortality among end-stage renal disease (ESRD) patients, routine cancer screening—including mammography, colonoscopy, prostate-specific antigen (PSA) and Pap smears—in dialysis patients with limited life expectancy, such as those who are not transplant candidates, is not cost effective and does not improve survival. False-positive tests can cause harm: unnecessary procedures, overtreatment, misdiagnosis and increased stress. An individualized approach to cancer screening incorporating patients’ cancer risk factors, expected survival and transplant status is required.

• Don’t initiate chronic dialysis without ensuring a shared decisionmaking process between patients, their families, and their physicians.  The decision to initiate chronic dialysis should be part of an individualized, shared decision-making process between patients, their families, and their physicians. This process includes eliciting individual patient goals and preferences and providing information on prognosis and expected benefits and harms of dialysis within the context of these goals and preferences. Limited observational data suggest that survival may not differ substantially for older adults with a high burden of comorbidity who initiate chronic dialysis versus those managed conservatively.

Read More

Canada: Even Less Advance Care Planning than in United States

The new study is reported here.

Read More

Legal Help for Families in a Medical Futility Conflict

I often get asked what legal support there is for an individual whose family member is or was the subject of medical futility dispute.  While these conflicts are almost always resolved informally through consensus-building resources within the facility (e.g. chaplains, ethics consultants, social workers, ethics committees), sometimes the conflict is intractable.  Sometimes, the providers proceed to take unilateral action, and the family feels powerless.  





Fortunately, hospitals and providers are regulated by a large and overlapping web of state, federal, and private regulators.  If you have been unable to resolve an end-of-life conflict with the providers at the facility where the patient is being treated, then you might contact one or more of the following regulators:

• The Medicare QIO for your region


• The state entity that licenses the hospital or relevant healthcare facility


• The Joint Commission (if the relevant facility is accredited)


• The state entity that licenses the relevant individual healthcare provider (e.g. Board of Medicine, Board of Nursing)


• The long-term care ombudsperson for residents in nursing homes


• The state Attorney General (since unilateral refusal might constitute elder abuse, elder neglect, or homicide)


• A private attorney (to pursue, for example, an injunction ordering providers to maintain life support, or if life support has already been withdrawn, tort remedies or statutory sanctions under your state's Health Care Decisions Act)


• The Alliance Defense Fund (a network of attorneys that regularly successfully represent individuals in such cases)


• Your state affiliate of National Right to Life (some affiliates like Texas have helped families obtain extensions and/or transfers to other facilities)

Read More

End-of-Life Liberty - Compassion & Choices National Conference

Compassion & Choices is holding its National Conference in Chicago from Thursday, June 28, 2012 to Saturday, June 30, 2012.

Read More

Legal Fundamentals of Surrogate Decision Making

My article, "Legal Fundamentals of Surrogate Decision Making" has just been published in Chest.  Here is the abstract:





The four previous articles in this series have traced the history of patient autonomy and have identified its ethical and legal foundations. Patient autonomy is highly valued in the United States to the extent that the patient does not lose the right of self-determination when he or she loses the capacity to make health-care decisions for him or herself. The law has devised several tools to promote “prospective autonomy.” One mechanism is the instructional advance directive or living will. But most of us do not write such directives. Another mechanism is the proxy directive or durable power of attorney for health care, designating another person, a surrogate, to direct the course of our medical treatment upon our incapacity. But most of us do not do that either. Therefore, the most common mechanism by which our prospective autonomy is protected and promoted is through the informal selection of surrogates based on statutory priority lists. These “default” surrogates are the most numerous type of surrogate. This article explains the importance and legal fundamentals of surrogate decision making. It first describes five basic types of surrogates. The article then looks at the role of these surrogates and how they are supposed to make decisions on the patient’s behalf. Unfortunately, surrogate performance is often mediocre or poor. There are significant and persistent obstacles to good surrogate decision making. After explaining these problems, the article concludes by identifying several solutions.

Read More

Expiration Date - Theater on Facing Death

If you are in Minneapolis during the next week, head over to Uptown to see Expiration Date.  This was an impressive and moving theater piece about facing death.  It was under 90-minutes long.  After a nice ride along the Mississippi and a bluff-side picnic, this was a fantastic capstone to my afternoon.

 

Read More

New Book - "It's OK to Die"

Dr. Monica Williams-Murphy vividly recalls performing emergency chest compressions on a 100-year-old nursing home patient with advanced dementia.  Lacking a 'Do Not Resuscitate' order, Williams-Murphy was obligated to do all she could to try to save a woman that she knew was beyond saving.  "I wasn't going to bring her back to something better." That experience got the Huntsville, Alabama Hospital emergency department physician thinking about why frail elderly people often get the "full-court medical press" at the end, rather than being allowed to slip away peacefully.   The result is "It's OK to Die," a new self-published book that she hopes spurs readers to have those difficult but important conversations about end-of-life decisions.

Read More