Brain Death and Futility - Webinar

I will be doing a webinar on "Brain Death and Futility" for the Arizona Bioethics Network on June 19.

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MEDCAC to Review Medicare Coverage of CT Scans for Smokers

On April 30, CMS will convene the Medicare Evidence Development and Coverage Advisory Committee (MEDCAC) to decide if Medicare will cover annual screenings for lung cancer with low-dose CT scans for current or past heavy smokers.  You can view the meeting here.



I am a voting member of MEDCAC and was invited to serve on this panel.  But I had a prior engagement: the ASBH program committee meeting in Chicago.  Too bad.  This is an important and difficult issue. 



In December 2013, the United States Preventive Services Task Force (USPSTF) recommended screening of asymptomatic adults aged 55 to 80 years who have a 30 pack/year smoking history and currently smoke or have quit within the past 15 years. The ACR, the Lung Cancer Alliance, the Society of Thoracic Surgeons and 38 other medical organizations want CMS to provide full national coverage for high-risk patients as defined in the USPSTF and provide coverage with evidence for other high-risk patients not included in USPSTF recommendations using data collected through existing registries.



Indeed, smoking-related lung cancer kills over 100,000 Americans each year.  The low five-year survival rate is attributed to the late diagnosis of the disease.



Nevertheless, as with recent debates over routine mammograms for women under 50 and PSA tests for men, the harms could outweigh the benefits.  Annual CT screenings mean a lot of radiation and a lot of false positives and unnecessary follow-up.

  

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American Afterlife: Encounters in the Customs of Mourning

Just published, American Afterlife: Encounters in the Customs of Mourning explores the experiences of individual Americans involved with death in a culture where even discussing such things is practically taboo. 



The book follows ordinary people making memorial choices as well as the purveyors of those choices to investigate how we memorialize our dead, where these practices came from, and what this says about us.



CNN Living reviewed the book this week and highlights an interesting difference between Victorian society and contemporary society.  We hardly ever talk about death but talk about sex all the time.  In contrast, the Victorians did not speak openly about sex but they were far ahead of us when it came to death.  



Perhaps it was because they were accustomed to seeing death all around them. Disease was rampant and life spans shorter -- the average American died at 47.  Infant mortality was so high that parents did not name their babies until after a first birthday. Most people died at home; bodies were often laid out for viewing in front parlors.

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Louisiana to Limit Liberty over Health Care Decisions

A few months ago, I predicted that the publicity of the Marlise Munoz case would prompt some legislative action.  Specificially, I thought that other states would remove Texas-type limitations in healthcare decisions acts that restrict the liberty of pregnant patients to withhold or withdraw life-sustaining treatment.  But at least in Louisiana things are moving in the opposite direction.



H.B. 348 (and here is the legislative digest) would require doctors and hospitals to use life support to keep a brain-dead pregnant woman alive until the birth of her child, no matter her family's wishes.  Representative Badon introduced the bill.  This week, the House Health and Welfare Committee backed the proposal without objection.  The measure now moves to the full House for consideration.

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Summer Institute for Informed Patient Choice

Please join me and a remarkable number of more distinguished and accomplished scholars at the Summer Institute for Informed Patient Choice.  Speakers are from law, medicine, bioethics, and patient advocacy.  So, there will be numerous opportunities for cross-disciplinary networking & discussion.  



WHEN:  June 25-27, 2014



WHERE:  Dartmouth College: Hanover Inn, Hanover, New Hampshire, USA.  



PURPOSE:  The SIIPC conference aims to reach an audience of policy-level delegates; law, medical, and ethics leaders; and patient advocates to help health care delivery go the final mile of ensuring that patients are aware of, understand, and can make use of evidence pertaining to their well-being. That is, to make sure that no patient is left in the dark. As two sides of the same coin, law and medicine must work together to encourage policy legislation to guide practice toward a true process of patient choice. SIIPC will draw on the ethical imperative for shared decision making in health care, and participants will:

• Attain a deeper understanding of the importance of greater transparency in health care;


• Engage in joint learning about innovative health care delivery methods to promote patient-centered care, and;


• Spread innovative solutions to promote safe, high quality, and transparent patient-centered care through inter-disciplinary collaboration.

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More Visibility and Awareness of VSED & VRFF Option to Hasten Death

I recently published my second legal analysis of VSED (VRFF) as a legal and comfortable means to hasten death.  (Here is the first.)  I am pleased to see the mainstream media devoting more attention to VSED.  



I blogged about one example here.  This week, WBUR ran a story titled "Aid-In-Dying Loophole: Advocates Want You To Know You Can Stop Eating And Drinking."  This was based on the story of Jackie Wilton's use of VSED as blogged by her daughter.

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Hospital Patients’ End-of-Life and Care Wishes Now Part of Electronic Medical Records

Lumināt today announced a development partnership with UMass Memorial Health Care for an advance care planning technology platform to integrate patients' end-of-life directives into their electronic medical records (EMR). 

Lumināt's development partnership is ground-breaking because:

• It is the first time that advance care plans have been integrated into an EMR system.  Previously, advance care plans were filed away with a patient's physician, leaving them open to interpretation from doctor to doctor.


• It leverages cloud-based technology to enable all providers in the UMass Memorial system to access, understand and implement the patients end-of-life wishes.


• It helps family members capture and understand the patient's end-of-life preferences, too.


• Ultimately, it saves the patient and family emotional and financial stress associated with unwanted health care services at the end of life.

Here is the official new release:

MINNEAPOLIS (April 21, 2014) — Lumināt announces a development partnership with UMass Memorial Health Care (UMass Memorial) for an industry-leading advance care planning platform to fully integrate patients’ end-of-life directives into their electronic medical records. This ground-breaking development partnership will equip all UMass Memorial providers to access, understand and implement patients’ wishes, reducing the cost of care at end of life while improving care quality and satisfaction of patients and their families.

“Unwanted end-of-life health care services can have a significant emotional and financial impact on patients and their families. It’s estimated that $40 to $70 billion in unwanted health care services will be delivered at patients’ end of life in the next decade,” says Tom Valdivia, M.D., M.S., chief executive officer of Lumināt. “Advance care plans should not be viewed as a ‘nice to have.’ Not having an advance care plan should be considered a medical error.”

The partnership between Lumināt and UMass Memorial will enable physicians to consistently document the end-of-life wishes from patients – from palliative care preferences and specific spiritual beliefs, to identifying the individuals who should be involved and informed in the decision-making process. The data is then fed into the patient’s electronic medical record via cloud-based technology, giving the entire provider system the same information and instructions, and helping family members understand the patient’s end-of-life preferences.

“Lumināt’s advance care planning platform integrated with UMass Memorial’s electronic medical records is a first in the industry,” says Valdivia. “Up to this point, patients completed the advance care directive on paper and submitted it to their physician to be filed away. As a result, the instructions weren’t accessible by all providers and were left open to interpretation from doctor to doctor.”

Lumināt and UMass Memorial’s development partnership is based on a shared dedication to improving care for patients near end of life.

“Unless communicated in advance, many medical treatments provided at the end of life are inconsistent with patients’ wishes,” says David Fairchild, M.D., senior vice president of clinical integration at UMass Memorial. “As UMass Memorial transitions to being an accountable care organization, we recognized the opportunity to use Lumināt technology to enable and support conversations about end of life.”

About Lumināt

Lumināt is a leading advance care planning solutions company that helps health care providers achieve the Triple Aim for people at end of life. Lumināt’s cloud-based, private-label technology offers a way for patients to document their wishes, share them with providers at the right time, and get the end-of-life care they want. Founded in 2012, Lumināt is committed to helping provider organizations deliver better care at a lower cost. For more information, please visit www.luminat.com.

About UMass Memorial Health Care

UMass Memorial Health Care is Central Massachusetts' largest not-for-profit health care delivery system, covering the complete health care continuum with UMass Memorial Medical Center, its academic medical center, member and affiliated community hospitals, freestanding primary care practices, ambulatory outpatient clinics, a rehabilitation group and mental health services. UMass Memorial is the clinical partner of the University of Massachusetts Medical School. To learn more about UMass Memorial, please visit www.umassmemorial.org, Facebook, Twitter and YouTube.

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Medicare Choices Empowerment and Protection Act (S. 2240)

I recently blogged about the Medicare Choices Empowerment and Protection Act (S. 2240).  I have since heard quite a few bioethicists criticize this bill.    

Much of this criticism seems appropriate.  There are a lot of ill-informed and misinformed advance directives out there.  If enacted, this legislation would prompt MORE of them.  In short, this legislation seems focused on the volume and number of advance directives, NOT on their quality.

The only caveat to that assessment would be if DHHS develops some very good accreditation criteria.  Perhaps DHHS will certify only advance directives completed with sophisticated interactive patient decision aids.  That would help ensure that the government's $75 is paying for "good" advance directives. 

I am informed by one highly respected clinician ethicist that one such certifiable interactive advance care planning tool is MyDirectives.  It prompts the patient to think about values prior to making choices about future care plans, allows very flexible choices including time-limited trials in a more effective manner than a paper document, is easy to update (since the directive created is digital), and is easily retrievable from the web (in fact has the potential to automatically populate EMRs).

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Doing Everything Possible: The Best or Worst Thing about American Medicine (VIDEO)

The World Affairs Council of Philadelphia has posted a video of my March 2014 debate with Wesley Smith: "Doing Everything Possible: The Best or Worst Thing about American Medicine."

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DHHS Will Pay You $75 to Register Your Advance Directive

Under the Medicare Choices Empowerment and Protection Act (S. 2240), which was introduced this month, the Department of Health & Human Services will pay Medicare beneficiaries $75 to register their advance directives.  



As I have reviewed before, most legislative and regulatory attempts have tried to promote advance care planning by paying clinicians more.  Those efforts failed.  In contrast, the instant bill focuses on providing financial incentives to the beneficiaries themselves.



Basically, DHHS will develop accreditation criteria and accredit certain providers of advance directives.  Once a beneficiary has adopted a certified advance directive, she can register it under the DHHS program and earn the incentive payment.

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10 Common Questions (and their Answers) on Medical Futility

Four Mayo Clinic physicians have just published a high level overview of medical, ethical, legal, financial, and policy issues relating to medical futility.  Here are the 10 questions.  Read the article for the answers.

1. What is the definition of medical futility?


2. How do challenges in prognostication contribute to medical futility?


3. What and who are the principal movers encouraging medical care that may be considered futile?


4. What are the financial arguments that may encourage or discourage the provision of medically futile care?


5. What are the core legal concerns that influence the provision of medically futile care?


6. Does the definition of medical futility differ depending on the type of patient?


7. Do the standards of appropriate vs. futile medical care change with time?


8. How does one adjudicate OUTSIDE the legal system whether medical care is futile and whether such care should be continued or stopped?


9. How does one adjudicate WITHIN the legal system whether medical care is futile and whether such care should be continued or stopped?


10. How does one prevent medical futility?

  

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7th Annual National Healthcare Decisions Day

IT’S HERE!  Today is the 7th Annual National Healthcare Decisions Day! 

ACTIVITIES/RESOURCES:  Even if you have your own resources, please also direct patients, residents, clients, and the public to the resources at: http://www.nhdd.org  There are free resources that people can care with loved ones throughout the country.

FREE WEBINAR TODAY: at 3:00pm eastern, please join me, Ellen Goodman and others for an NHDD webinar.  Register at:http://theconversationproject.org/

LEAD BY EXAMPLE: As always, please encourage others by your example.  Here’s a simple message you can send/post to your family and friends tomorrow:

Today is National Healthcare Decisions Day.  I have had a talk about advance care planning with my loved ones.  Have you?  Free information, forms, tools, and an incredible video are at: www.nhdd.org  Do it today.

SPREAD THE WORD FURTHER: Please share NHDD information with your members/contacts/colleagues by forwarding this email or a link to www.nhdd.org or NHDD on Facebook or Twitter or LinkedIn 

JOIN US:  If you are receiving this email second-hand (or have not previously confirmed participation), please let us know who you are by completing the short participant confirmation here:  http://www.nhdd.org/join/

DON’T FORGET THE REST OF THE YEAR:  NHDD is our rallying day, but advance care planning is important throughout the year.  Continue to use the NHDD resources and always be on the lookout for activities to make NHDD even better.   

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International Conference on End of Life: Law, Ethics, Policy and Practice - ABSTRACT DEADLINE

From August 13-15  2014, the Queensland University of Technology in Brisbane, Australia will be hosting the International Conference on End of Life: Law, Ethics, Policy and Practice.  The call for abstracts closes Wednesday, April 30.

ICEL 2014 will provide a global forum at which health law scholars, bioethicists, legal and health practitioners, and health law and bioethics institutions can meet to discuss and present on law, ethics, policy and practice relating to the end of life. Abstracts on the conference’s four sub-themes are particularly welcome:

• Withholding and withdrawal of potentially life-sustaining treatment (e.g. advance care planning, futile treatment)


• Palliative care and terminal sedation


• Euthanasia and assisted suicide


• Determination of death and organ and tissue donation

Here are some highlights:

• Debate on ethics of euthanasia and assisted suicide -- Professor Peter Singer, Princeton University & Assistant Professor Charles Camosy, Fordham University


• How we die -- Dr Peter Saul, John Hunter Hospital & Professor Michael Ashby, Royal Hobart Hospital and Southern Tasmania Health Organisation (THO)


• Withholding and withdrawing life-sustaining treatment -- Professor Jocelyn Downie, Dalhousie University


• Panel sessions: Comparative flash points in end of life law, ethics and policy


• Terminal sedation -- Professor Shelia McLean, Glasgow University


• Determination of death -- Dr Dale Gardiner, Nottingham University Hospitals


• Assisted death practice: Research from around the world

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The Changing Legal Climate for Physician Aid in Dying

Posted today and available for free from JAMA:  "The Changing Legal Climate for Physician Aid in Dying."



A summary of the trend toward legalization that I prepared with David Orentlicher and Ben Rich.

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Very Preterm Baby Beats the Odds and Survives

Radiolab has a compelling audio story (based on earlier newspaper stories by the parents) about the medical journey navigated by the parents of a newborn infant born at 23 weeks, 6 days.  

At one point, an operation was required.  But he surgeon initially refused to operate on the preterm infant, because surgery was "futile."  But despite the odds, the baby survived - not just surgery but also the NICU stay.

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Honoring Choices Across Cultures: End of Life & Advanced Care Planning

On Wednesday, May 7, the University of Minnesota will host a one-day conference:  "Honoring Choices Across Cultures: End of Life & Advanced Care Planning."

DESCRIPTION

High quality advanced care planning and end of life care is essential to ensuring that patients do not receive unwanted care in their last days, weeks, and months of life. As our population ages and health care spending grows, this issue becomes more and more pressing. Health disparities exist between majority culture and minority cultures in many areas, including advanced care planning and end of life care. Discussions around these topics can be difficult in the best of circumstances, and language or cultural barriers can lead to poor quality or even damaging conversations that cause harm to patients or the provider/patient relationship. This course aims to address this challenging area of medicine.



COURSE DESIGN

This one-day conference will include didactic lectures in the morning. The afternoon will include small-group simulated patient encounters with live standardized patients, as well as small-group tabletop scenarios. The simulated patient encounters will allow learners to each be the provider leading  discussion with a patient or family member, followed by a small-group debrief led by a faculty expert.  Tabletop exercises will include discussions of common clinical scenarios facilitated by a faculty expert.



EDUCATIONAL OBJECTIVES

Upon completion of this educational activity, participants should be better able to:

• Develop a framework for leading discussions with patients and families about advanced care planning and end-of-life care 


• Review evidenced-based methods for cross-cultural bargaining and discussion 


• Apply skills learned in didactic sessions to live simulated patient encounters 


• Comfortably address advance care planning and end-of-life care when a language or cultural barrier exists.

SCHEDULE

7:30 – 8:00 

Registration and Continental Breakfast

8:00 – 8:15 

Welcome and Introduction to health disparities in Advance Care Planning - Brett Hendel-Paterson, MD, CTropMed

8:15 – 8:45 

Panel Discussion about cross-cultural approaches to advance care planning - Miguel Ruiz, MD; Mohamed Hagi-Aden, MD, Channy Som, (Interpreter)

8:45 – 9:30 

Advance Care Planning – Definitions and Best Practices - Drew Rosielle,MD FAAHPM

9:30 - 9:45 

Break

9:45 – 10:15 

Introduction to Cross-Cultural Communication - Pat Walker, MD, DTM&H, FASTMH

10:15 – 10:45 

Cross-cultural bargaining and discussions of end-of-life care - Kathie Culhane-Pera, MD

10:45 – 11:15 

End of Life Care and Advance Care Planning – a practical framework for working across

cultures - Miguel Ruiz,MD

11:15AM – 12:00

Questions/Discussion

12:00 – 1:00 

Lunch

1:00 – 2:30 

Afternoon Session A*

1.) Sim-Center Cases

2.) Tabletop exercises (5-6 cases)

2:30 – 2:45 

Break and transition next group

2:45 – 4:15 

Afternoon Session B*

1.) Sim-Center Cases (3 cases)

2.) Tabletop exercises (5-6 cases)

4:30 – 5:00 

Group Debrief - Brett Hendel-Paterson, MD; Patricia Walker, MD



SIM CENTER CASES

The Sim Center Cases will include three cases with professional standardized patients and debriefing led by an experienced teacher in palliative care or primary care. The cases will include one inpatient case, one clinic-based case, and one home-based case. Each participant will have the opportunity to be the lead provider for at least one case, and be an active observer in one or two other cases.



TABLETOP EXERCISES

Tabletop Exercises will include small-group discussions of some common scenarios that arise in inpatient or outpatient medicine around advanced care planning and end-of-life care. Groups will be facilitated by a faculty expert in palliative care or primary care.

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Terri Schiavo Life & Hope Network WRONG to Defend the Dead?

The Terri Schiavo Life & Hope Network is a Pennsylvania-based nonprofit that works to "protect the lives of the medically vulnerable from the threat of imposed death."



Earlier this year, the Network helped the family of Jahi McMath by "assembl[ing] a team of advocates that located a facility to provide the care Jahi needed."  More recently, the Network honored the family in its award gala.



I wonder if devoting resources to litigate this case and to provide mechanical interventions for Jahi McMath's body was prudent for the Life & Hope Network.  After all, it is one thing to protect vulnerable adults from coercion, manipulation, bias, and conflict of interest that might hasten death.  It is quite another to defend the dead themselves.  Some donors may feel that the Jahi McMath case falls outside the appropriate scope of the organization's mission.

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National Healthcare Decisions Day - Minnesota

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Health Care Decisions and the "F" Word: Counseling Clients about Medical Futility

Health Care Decisions and the "F" Word: Counseling Clients about Medical Futility



Date: Wednesday, April 23, 2014

Format: Live Webinar

Duration: 90 minutes

Register here

         

Sponsors



The American Bar Association Commission on Law and Aging, Senior Lawyers Division and Center for Professional Development

1:00 PM-2:30 PM Eastern

12:00 PM-1:30 PM Central

11:00 AM-12:30 PM Mountain

10:00 AM-11:30 AM Pacific



Program Description



Recent cases involving brain dead patients and resulting disputes over continuing organ-sustaining treatments have reignited debate over the appropriate use of medical technologies.  The family of Jahi McMath in Oakland, CA, fought to keep their daughter connected to a ventilator, while a hospital in Fort Worth, TX, sought to keep Marlise Muñoz, fourteen weeks pregnant, on a ventilator over the objection of her husband and family.  For terminally ill patients who are not brain dead, a family's desire to "do everything possible" sometimes leads to insisting on medical interventions that medical professionals may deem inappropriate or "futile."  



Objectives

• Provide you with an understanding of the range of policy and practice issues concerning medical futility


• Enable you to be accurate and supportive in counseling clients on these issues in the context of advance planning


• Enable you to be more effective in counseling and dispute resolution when conflicts arise in end-of-life decision-making concerning the limits of care


• The focus is not on litigation. 

Program Faculty

• Robert L. Fine, MD, FACP, FAAHPM, Clinical Director, Office of Clinical Ethics and Palliative Care, Baylor Health Care System, Dallas, TX


• Bernard "Bud" Hammes, Ph.D, Director of Medical Humanities, Gundersen Lutheran Medical Foundation, La Crosse, WI


• Thaddeus Mason Pope, JD, PhD, Director, Health Law Institute & Associate Professor of Law, Hamline University School of Law, St. Paul, MN


• Charles P. Sabatino, JD (Moderator), Director, ABA Commission on Law and Aging, Washington, DC

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Who Calls the Shots? Exploring the Authority of the Principal, Agent, and Provider under a Health Care Directive

The Health Law Section of the Minnesota State Bar Association is presenting a timely CLE:  "Who Calls the Shots?  Exploring the Authority of the Principal, Agent, and Provider under a Health Care Directive."



Date: Friday, April 18, 2014 8:00 AM to 9:00 AM

Venue: Salon D / Radisson Hotel Roseville 

Register:  Here



Learn about drafting, implementing, relying on, and troubleshooting health care directives from both the provider and consumer perspectives, including identifying legal standards and desired language, honoring the wishes of the principal (such as who can visit and what treatments the provider can reasonably provide), weighing factors when determining how to follow the directive, determining when a principal is capable of making decisions and the agent has authority to act, addressing potential conflicts such as patient confidentiality vs. family information and health care providers preparing directives, signing a POLST or DNR/DNI as an agent, interpreting authority of a financial power of attorney as opposed to a health care agent, and opening up dialogue for improvements for all parties involved.



Please join us for breakfast beginning at 7:30 a.m., followed by the program from 8:00 - 9:00 a.m.



Presenters:

Marlene Garvis, Esq., Jardine, Logan & O'Brien P.L.L.P.

Suzanne Scheller, Esq., Scheller Legal Solutions LLC



CLE Credits:

1 Standard CLE credit approved | Event Code: 187697



Remote Participation:

Teleconferencing is available. Please indicate that you will attend by teleconference when registering. Teleconferencing instructions will be sent via e-mail on Thursday, April 17.

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Bentley Family Appeals British Columbia Supreme Court Ruling on Advance VSED

In early February, the Supreme Court of British Columbia issued a 44-page decision in Bentley v. Maplewood Seniors Care Society (2014 BCSC 165).  I analyzed and critiqued the decision in the Spring 2014 issue of the Journal of Clinical Ethics 25(1).



The family has appealed the Court's ruling to the Court of Appeal for British Columbia (Case Number CA-41600).  The Court of Appeal is the highest court in the province.  But it may be some time before we get a sense of the parties' arguments.  It normally takes 6 months to perfect an appeal and another 6 months to get a hearing.



My quick reading of the Court of Appeal rules indicates that the following is a rough schedule:

• February 24, 2014 -- Notice of Appeal filed 


• April 24, 2014 -- Appeal record filed (within 60 days of above)


• May 24, 2014 -- Appellant (Bentley family) files its Factum (within 30 days of above)


• June 24, 2014 -- Respondent (Maplewood Care) files its Factum (within 30 days of above)


• July 1, 2014 -- Appellant files Reply (within 7 days of above)

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Advance Directives & Nursing Home Stays Associated with Less Aggressive End-of-Life Care for Patients with Severe Dementia

A new study in Health Affairs shows some material benefits of advance directives:  "Advance Directives and Nursing Home Stays Associated with Less Aggressive End-of-Life Care for Patients with Severe Dementia."



The authors found that that nearly 30 percent of patients with severe dementia remained in the community until death. Among those patients, having an advance directive in the form of a living will was associated with significantly less aggressive care at the end of life, compared to similar patients without an advance directive.

• Medicare spending ($11,461 less per patient)


• Likelihood of in-hospital death (17.9 percentage points lower)


• Use of the intensive care unit (9.4 percentage points lower)

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New Book on Advance Directives

The preface of a new book on advance directives rightly notes that "many ethical and policy issues remain in need of further exploration."



Part I - History of Advance Directives and Prerequisites for Validity

• 1. Historical Review of Advance Directives (Alfred Simon) 


• 2. Personal Capacity to Anticipate Future Illness and Treatment Preferences (Marie-Jo Thiel) 


• 3. Advance Directives in Psychiatry (Jochen Vollmann)

Part II - Defining the Scope of Advance Directives

• 4. On the Scope and Limits of Advance Directives and Prospective Autonomy (Robert Olick)


• 5. Revocation of Advance Directives (Ralf Jox)


• 6. Limitations to the Scope and Binding Force of Advance Directives: the Conflict Between Compulsory Treatment and the Right to Self‑Determination (Jacqueline Atkinson & Jacqueline Reilly)


• 7. Advance Directives in the Context of Imprisonment (Bernice Elger)

Part III - Effects on Family, Friends and Professional Relations

• 8. Advance Directives and the Physician-Patient Relationship: A Surprising Metamorphosis (Mark Aulisio)


• 9. Advance Directives and the Role of Family and Close Persons – Legal Provisions and; Challenges (Margot Michel) 


• 10. Advance Directives and the Ethos of Good Nursing Care (Settimio Monteverde)

Part IV; Ethical Challenges

• 11. Advance Directives Between Respect for Patient Autonomy and Paternalism (Manuel Trachsel et al)


• 12. The Use of Advance Directives in the Context of Limited Resources for Healthcare (Ruth Horn & Ruud ter Meulen)


• 13. From Legal Documents to Patient-Oriented Processes: The Evolution of Advance Care Planning (Tanja Krones & Sohaila Bastami)

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Administration of UNWANTED End-of-Life Treatment Continues

A study presented at the 2014 annual meeting of the Society of Critical Care Medicine (abstract 720) found that patients’ clearly stated wishes not to be resuscitated or placed on life support were not followed in 21 of 35 cases. 



The most significant factors in these unwanted intubations were 

• intervention by patients’ families to countermand their known wishes (nine cases) 


• an inability to locate documentation of patients’ wishes in a timely manner (eight cases)

In three cases, family members or proxies who were aware of the patients’ wishes not to be resuscitated were not present at the time the decision to resuscitate was made. In the remaining case, the patient required immediate intubation before being able to discuss the decision with family members.  (Anesthesiology News also here in HTML)



This study is hardly new and surprising.  I reviewed similar studies in my recent long article: "Clinicians May Not Administer Life-Sustaining Treatment Without Consent: Civil, Criminal, and Disciplinary Sanctions."  But the newer study certainly does confirm the need to address persistent deficiencies with surrogate decision making, documentation of patient preferences, and the use of POLST.

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Court of Protection Allows Clinicians to Stop Life Support over Parents' Objections

On Friday, Mrs. Justice Theis of the Court of Protection gave healthcare providers permission to stop providing life-support treatment to a sick little boy who has been in hospital all his life and on a ventilator for several weeks. 



Parents

The boy's parents had asked the judge to give their son "every opportunity to live for as long as he could without causing him harm."



Clinicians

Clinicians concluded that further life-support treatment was unlikely to prolong the youngster's life but would cause him pain and distress.  The judge had been told by doctors that the little boy had a neurological condition - the cause of which was not known - and was likely to die within weeks without life-support treatment.  Doctors had said further life support treatment or resuscitation would not be in his best interests.  They said he should be made comfortable and given palliative care.



Court

"I have reached the conclusion that any further treatment given to (the little boy) over a significant period of time by way of artificial ventilation is unlikely to prolong life expectancy."

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Defensive Medicine Like Crossing a Mine Field

When it comes to end-of-life treatment disputes, clinicians often think that they must cross a legal "mine field" to get to the appropriate medical course of action.  Let's use this metaphor to explore the resolution of intractable end-of-life treatment conflicts.



To be precise, clinicians not only believe that there is a legal mine field, they also think the field is heavily mined, such that there is a very good chance they will be blown up.  In fact, the field is very lightly mined.  Clinicians could cross the field repeatedly without triggering any mines.  



Nevertheless, that clarification is understandably of little comfort. To permit clinicians to practice what they judge appropriate medicine, we need to reassure them that it is "safe" to cross the mine field.  It is insufficient to say "there aren't too many mines."  We need to either (a) confirm that there are zero mines or at least (b) mark where the mines are so they can be avoided.  



Doing the latter is analogous to the legislation of legal safe harbor immunity.  So long as clinicians follow a certain "path," they will not get blown up.  But what path should be required?  How much deference do we want to accord to the profession?  How much oversight and accountability do we want to retain?  How much can we retain without introducing more mines?  This is my project.

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Never Say Never - Long Odds Sometimes Do Payoff

A few years ago, I was presenting on medical futility disputes at the Wynn in Las Vegas.  To fit the scene, I included lots of gambling references.  For example, in the ICU context, surrogates are often ready to "roll the dice."  After all, they need not lay down a bet.  Medicare and the private payers are covering the financial cost.  And the nursing staff is bearing the psychic cost.  



Still, when the odds are anything north of zero, nothing in medicine or science can authoritative say that the patient's chances are "too low."  First, prognostication is difficult and imprecise.  Second, even if we knew that the patient's chances of recovery were low, it is a contested value judgment whether they are worthwhile to pursue.



Sometimes, long odds pay off.  For example, on leaving a Sports Authority store, I filled out a sweepstakes entry.  While the odds of winning were slim, I won.  My son and I got lots of free equipment.  And he got to throw out the opening pitch at a Twins baseball game.

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Minnesota Mini Bioethics Academy 2014

The University of Minnesota Center for Bioethics is hosting a Mini Bioethics academy, open to anyone interested in learning about and discussing bioethical issues.

Shades of Grey: Ethics and Controversies about Brain Death

• Tuesday, April 22 6:30-8:30 pm


• Mill City Innovation & Collaboration Center – 901 S. Second St., Minneapolis, MN


• Jennifer Needle, MD, MPH, Assistant Professor, Center for Bioethics; Assistant Professor, Department of Pediatrics, University of Minnesota Medical School


• Recent headlines about patients who are declared brain dead but remain on life support have raised questions about what it means to be brain dead. How has the concept and controversy evolved over time for medicine, ethics, religion, and society? Dr. Needle will explore the history and science of brain death, the implications for patients and their families, and how ethics addresses these concepts.

Health Care Directives: Beyond the Document to the Conversation

• Tuesday, April 29 6:30-8:30 pm


• Mill City Innovation & Collaboration Center – 901 S. Second St., Minneapolis, MN


• Joan Liaschenko, PhD, RN, FAAN, Professor, Center for Bioethics; Professor, School of Nursing, University of Minnesota


• Health Care Directives have been in existence for 25 years as documents. This talk explores the history of health care directives and critiques them as documents. It suggests that the real value of a health care directive is revealed when it serves to facilitate a conversation between a person and significant others about the inevitability and meaning of one’s death.

The Conversation in the Public Domain

• Tuesday, April 29 6:30-8:30 pm


• Mill City Innovation & Collaboration Center – 901 S. Second St., Minneapolis, MN


• Terri Traudt, MA, Graduate student in Bioethics with emphasis in public awareness and education.


• This talk focuses on a public education initiative aimed at helping people have conversations about advance care planning and health care directives. Specifically, it describes “Honoring Choices Minnesota,” a partnership between several health care systems and community groups, the goal of which is to educate the public on the importance of having a conversation about health care preference with significant others. It explores the history, successes, and challenges of the project.

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What Will It Take to Revolutionize Informed Consent?

Here is a new blog post based on an interview that I did for the seventh annual Summer Institute for Informed Patient Choice (SIIPC) at the Dartmouth Center for Health Care Delivery Science:  "What Will It Take to Revolutionize Informed Consent?"

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After Court Battle, Hospital Withdraws Life Support Anyway - Terry Andrew Mace

Here is a quick chronological recap of the Terry Andrew Mace case:

• March 6:  Collapsed at home


• March 18:  Estranged wife arrives from Colorado (separated for 5 years and in midst of divorce proceedings)


• March 20:  Wife authorizes DNR


• March 22:  Wife authorizes removal of CANH


• March 24:  Williamson County, TX court grants TRO blocking wife's decisions


• March 27:  Court grants temporary guardianship to father


• March 29:  Hospital puts Mace on "comfort care"


• April 1:  Mace dies at 1:00 a.m.

In short, notwithstanding the plan and intent of Terry Mace's family, Seton Hospital apparently withdrew his life support.  



The family's lawyers say they believe there was a "communication barrier" between Mace's family and the hospital.  (Austin American Statesman)  They believe the hospital didn't explain "comfort care" to the family properly, and if they had known his tubes would be taken out, they would have gone back to court to have them reinstated. 

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Healthcare Ethics Committees Must Include a Disability Representative

Douglas Diekema will be in town on Friday, April 11, 2014.  He will be speaking at the University of Minnesota from 12:15-1:30 pm in Room 3-100 Mayo (East Bank Campus of the University of Minnesota).  His topic:  "Ashley X Revisited: Growth Attenuation and Children with Severe Developmental Disabilities."



Recall that one of the outcomes of the investigation after the Ashley X case was that the ethics committee would include a disability representative.



I just finished reading Alicia Ouellette's "Context Matters: Disability, the End of Life, and Why the Conversation Is Still so Difficult."  This convinces me that the danger of disability bias is both very real and very broad.  



This bias must be mitigated, especially since HECs often have decision making power.  One good way to mitigate the risk of disability bias (following the federal IRB composition rules for prisoners and other vulnerable populations) would be to include a disability representative on the HEC.

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Patients Close to 100 Undergoing Risky Surgery

Patients aged close to 100 are having high-risk surgery for deadly conditions.



A senior medical official said that doctors were engaging in “futile care” and wasting taxpayers’ money on risky operations “just because they can.”



But the doctors performing say they are extending the lives of otherwise fit and elderly people in an era when 80-year olds “are a lot healthier” than a those of a decade ago.

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