Medical Futility and Maryland Law II

I am on the way back home from spending the day in Baltimore with some 200 healthcare professionals, hospital lawyers, and risk managers, talking about whether there should be changes to the unilateral refusal provisions in the Maryland Health Care Decisions Act.  The general consensus was that changes are needed.  Among other things:

• Maryland is a treat until transfer state.  Even if the hospital determines inappropriateness, it must continue to provide the disputed treatment until the patient is transferred.  


• The definition of "medically ineffective" is extremely narrow, effectively encompassing only physiological futility.  

MY attention was drawn to a few things I had not sufficiently grasped before.  For example, Charlie Sabatino pointed out that once a medical inappropriateness determination is made, the transfer could be impaired because that determination could itself affect reimbursement at the potential transferee facility.  In other words, the refusal of transfer may not be due to an agreement of medical inappropriateness but to a concern about taking an expensive patient.  While the patient may be insured at the time of the transfer, she may be imminently uninsured either because of inpatient days, total cap, or because of the dispute resolution process itself.

Medical Futility and Maryland Law

On Monday, Baltimore radio station, WYPR, ran this show about medical futility and Maryland law.  This was a warm-up for next Tuesday's all-day conference on the topic.

Ira Byock and Elliott Fisher on Better End-of-Life Care

We're all going to die someday, but imagine for a moment that you have a terminal illness and will die in two months. Where would you choose to be as you approach the end of your life? Most people would say they'd like to be at home, but in reality, 75% of all people at the end stages of life die either in a hospital or nursing home. New Hampshire Public Television hosts a provocative discussion about end of life care with Dr. Ira Byock and Dr. Elliott Fisher. Dr. Byock is the Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center. He is the author of Dying Well and The Four Things that Matter Most as well as the co-author of several other books. Dr. Fisher is Director, Center for Population Health at The Dartmouth Institute for Health Policy and Clinical Practice.

Engage with Grace

Bioethics and Disability: Toward a Disability-Conscious Bioethics

One thing I that forgot to blog about when I was in Albany a few days ago is that my colleague Alicia Ouellette (at Albany Law School) has just finished Bioethics and Disability: Toward a Disability-Conscious Bioethics (Cambridge University Press 2011) ((ISBN-13: 9780521110303).  Here is the table of contents:

1. The struggle: disability rights versus bioethics

2. Clashing perspectives and a call for reconciliation

3. Infancy

4. Childhood

5. The reproductive years

6. Adulthood

7. The end of life

8. Toward a disability-conscious bioethics

Canine Medical Futility

Today, on NPR's Fresh Air: “Helping Your 'Good Old Dog' Navigate Aging.”  As dogs age, taking care of them becomes more difficult. Owners of aging dogs often struggle with their pets' dementia and incontinence — as well as navigating through the maze of end-of-life care decisions.   Among other things, this show covers “what to do when [a] pet gets a terminal disease.”   

Veterinarian Nicholas Dodman explains that some owners treat a dog’s cancer aggressively “just to drag out an existence.”  He says “Some people, I have known in the past ... have done that. Owners, with cooperating vets, have just gone step after step after step, when really, you're on a highway to nowhere. If the dog is in chronic pain and doesn't have long to go, sometimes I question the wisdom of that approach."

Expectations, Hope, and Futility (July 7-10, 2011)

The Australian Association of Bioethics and Health Law (AABHL) 2011 conference is titled "Expectations, Hope, and Futility: Law and Bioethics in Contemporary Healthcare."  It will be held July 7-10, 2011 on the Gold Coast.

Getting the DNR vs. Reaching Consensus

Wynne Ellen Morrison at The Children's Hospital of Philadelphia has a brief "personal reflection" piece in the Journal of Palliative Medicine titled "Is that All You Got?"  A young child is imminently dying from leukemia related complications such as overwhelming sepsis.  The ICU team is constantly pushing medications, fluids, and blood products.  The boy is on a ventilator.  Morrison then talks to the family and they all agree to make the patient DNR.  The fellow back in the ICU asks "is that all you got?"  





In her article, Morrison talks about framing the discussion as goal-oriented, as "getting the DNR."  She supports an "informed nondissent position" in which she makes her recommendation clear but allows the surrogates to raise objections.  Still, her overall purpose is not to "convince them they had to stop but to come to an agreement with them about mutually acceptable and achievable goals."  (HT: Art Caplan)

PBS "Facing Death" -- Community Viewing and Discussion

Last night, social networking expert Christian Sinclair hosted a community viewing and discussion of the new PBS show "Facing Death."  Summaries of the event are also available here.  I wish that I would have been free to participate.  Fortunately, he created and posted a complete Twitter transcript.

Robert Painter - Video on Texas Unilateral Refusal Law

Robert Painter is a Texas attorney who has written in opposition to the TADA 166.046 provision, at least here and here.  He launched a website, Surviving Hospitals, for patients and surrogates.  And he has also represented clients adverse to hospitals in futility disputes.  This week, he posted a video of a presentation that he made to the Houston Disability Elder Law Association.

A Framework for Resolving Disagreement during End of Life Care in the Critical Care Unit

In the August 2010 issue of Clinical and Investigative Medicine, Karen Choong and colleagues provide "A Framework for Resolving Disagreement during End of Life Care in the Critical Care Unit."  They provide a 10-step approach for resolving disagreement.  The final step in the process, at least in the Canadian provinces Ontario and Yukon, culminates in submitting an application to the CCB (respectively, Consent and Capacity Board and Capability and Consent Board) on the grounds that the substitute decision maker is not acting in the patient's best interests.  



These Boards can act very quickly and are more expert than a regular court to adjudicate medical futility disputes.  One drawback, however, is that their decisions can be appealed to a regular provincial court.  Even on an expedited schedule that judicial review often takes so long that the underlying dispute often becomes moot in the meantime.

Dartmouth Atlas - Quality of End-of-Life Cancer Care for Medicare Beneficiaries Regional and Hospital-Specific Analyses

Every newspaper across the country has already reported it and analyzed its implications for its particular local market.  But here is the link to the Dartmouth Atlas' latest report, Quality of End-of-Life Cancer Care for Medicare Beneficiaries Regional and Hospital-Specific Analyses.  Here is the 3-page press release.

Berwick's Testimony to the Senate Finance Committee

On Wednesday, CMS Administrator Donald Berwick testified before the Senate Finance Committee.  Senator Ron Wyden (D-Ore.) told Berwick that he wanted an approach to end-of-life care that is “the opposite of rationing.”  Berwick responded:  “My principle is that patients should get all of the care they want and need, when and how they want and need it.”In his written statement Berwick said PPACA won’t cut guaranteed Medicare benefits “nor will it ration care.”





Last year, Berwick stated, correctly:  “The decision is not whether or not we will ration care.  The decision is whether we will ration with our eyes open.  And right now, we are doing it blindly.”  

 

Vitalists, Get Yourselves aboard an Airplane

In the latest New England Journal of Medicine, Malcolm Shaner describes CPR on an airplane flight that was increasingly recognized as futile by the physician passengers conducting it.  Apparently, though, flight crews will, no matter what, continue CPR until the plane lands.  

New York Family Health Care Decisions Act

I spent the day in Albany, NY with the Alden March Bioethics Institute, talking about the impact of New York's Family Health Care Decisions Act that went into effect on June 1, 2010.  Also discussed were next steps, both in terms of implementing the law and in terms of still-needed legislative changes.  This picture is of a mock ethics consultation with Bruce White, Wayne Shelton, and Shelia Otto.

Frontline: Facing Death: How Far Would You Go to Sustain the Life of Someone You Love

The PBS series Frontline has posted a new show, Facing Death: How Far Would You Go to Sustain the Life of Someone You Love.  Frontline gains extraordinary access to The Mount Sinai Medical Center, one of New York's biggest hospitals, to take a closer measure of today's complicated end-of-life decisions. In this intimate, groundbreaking film, doctors, patients and families speak with remarkable candor about the increasingly difficult choices people are making at the end of life: when to remove a breathing tube in the ICU; when to continue treatment for patients with aggressive blood cancers; when to perform a surgery; and when to call for hospice.

More than Half of Physicians May Give Life Sustaining Therapy that They Judge Futile

Over 10,000 physicians responded to an August 2010 Medscape Survey on key ethical issues.  The results are now being reported.  One question was:  Would you ever recommend or give life-sustaining therapy when you judged that it was futile?  Only 37% said "no."  Nearly 24% said "yes."  And Nearly 40% said "it depends."

Bedin v. Northwestern Memorial

Yesterday, Northwest Memorial Hospital in Chicago prepared to ask Winnebago County Court Judge Gwyn Gulley to revoke Dolores Bedin's daughter Janet Bedin's power of attorney and appoint a guardian who would consent to removing 86-year-old Dolores Bedin from the hospital.  Bedin had been a pancreatic cancer patient at Northwestern and has been ready for discharge since September 18th.  

The case settled.  Janet told WIFR that she agreed to take her mom home on Friday for fear of losing guardianship.  She explained that "the possibility that she might lose power of attorney over her mother was a major factor in her decision to sign off on the agreement"  (Chicago Tribune 1)  She stated:  "I don't like to be beaten down but I am," Janet Bedin said. "They wore us down, and it's not right that it happened."  (Chicago Tribune 2)

 

Surrogate Replacement: Northwestern Memorial v. Bedin

Janet Bedin is the attorney-in-fact for her 86-year-old mother Delores Bedin.  But Chicago's Northwestern Memorial Hospital says Bedin, who has inoperable pancreatic cancer, has been medically ready for release since Sept. 18. (Chicago Tribune)  Janet strongly disagrees.  This morning, Northwestern is asking that a public guardian be appointed for Dolores Bedin, arguing that Janet is not cooperating with the hospital's efforts to discharge her mother to a lower level of care and therefore not acting in her mother's best interests.

In a lengthy article about-to-be-published in the St. Louis University Journal of Health Law and Policy, I explore “surrogate selection” as a solution to medical futility disputes.  

Futility in Wisconsin

I just finished one very full day (7:30 a.m. - 5:00 p.m.) of discussing medical futility in Madison, Wisconsin  It was both enjoyable and rewarding.  I posted a PDF of the slides (over 200) to my major presentation here. 

Unilateral Refusal of Treatment by Providers: Ethical and Legal Challenges

"Unilateral Refusal of Treatment by Providers: Ethical and Legal Challenges" is the title of my presentation for Meriter Health Services’ 21st Annual Fall Ethics Conference in Madison, Wisconsin, tomorrow. (PDF brochure here)

Palliative Care Grand Rounds (Nov. 2010)

Compassion and Choices is hosting this month's Palliative Care Grand Rounds -- "the awesome little (and big) nuggets of great blogging on all things hospice and palliative care."

Medicare Coverage for Advance Care Planning

Charlie Sabatino reports:

Yesterday,  CMS pre-posted the 2000+ page physician payment final rule and comments on the OFR website.  Formal publication in the Federal Register is projected to be Nov. 29.  The final rule includes reimbursement requirements for the new annual wellness/preventive care exam under the Medicare changes that were included in the healthcare reform bill.  In response to comments urging CMS to require that physicians offer voluntary advance care planning as part of the annual exam, and CMS agreed!

You'll recall that a legislative provision to offer voluntary ACP every 5 years was dropped from the healthcare reform bill because of hysteria over government encouraged euthanasia.  This approach to the annual wellness exam restores some sanity to the picture.  ACP has already been a required part of the "Welcome to Medicare" since the Medicare Modernization Act of 2003, and since ACP requires an ongoing effort, it makes a lot of sense to revisit it at least annually.  This is a big step forward in normalizing advance care planning.  The relevant pages [of the final regulation] are 766-768 for the commentary and 1488-1494 for the reg language.

APPELLATE DIVISION IMPLIES MEDICAL PROVIDERS MAY REFUSE TREATMENT BASED UPON FUTILITY OF CARE

Daniel Levy has an op-ed in this week's New Jersey law Journal on the Betancourt case. The central part of his analysis is as follows:

[T]he Appellate Division did not resolve the substantive issue of whether a health care provider may withdraw care based upon futility . . . . The court seemed unwilling to rule on the issue because such a ruling would be 'whole-cloth legislation from the bench.' The court did, however recognize that the debate on medical futility would continue and should be addressed 'in thoughtful consideration by the Legislature as well as Executive agencies and Commissions charged with developing the policies that impact on the lives of all.'  Although at first glance it may appear that the Appellate Division side-stepped on an important issue with possibly nationwide consequences, the suggestion that the issue is best left for proper legislation may be the best course of action. The hospital sought an openended exception to the right-to-die doctrine for whenever a health care provider deems treatment to be unnecessary. While an exception that would allow some ability for a health care provider to refuse to continue treatment that is deemed unethical may be appropriate in certain circumstances, accepting such an argument might have led to an overbroad exception.  The Legislature may in general be better to craft a medical futility statute that would set the requirements for when a health care provider can refuse to continue providing treatment that would be considered futile.