Thursday, October 2, 2014

Lawsuit Seeks Declaration that Jahi McMath is Now Alive

Ten months ago, in December 2013, Jahi McMath was declared dead both by three neurologists and by a California judge.  But just yesterday, her family filed a petition seeking to have her declared alive.  (San Francisco Chronicle)

The family claims that new tests, including an MRI, show that Jahi has regained brain activity.  Plus, the petition alleges, Jahi responds to commands from her mother.  Apparently, several experts have already evaluated Jahi.  These "certified neurologists, pediatric neurologists and a prominent world expert on brain death" will testify that Jahi is not dead.

As I recounted in a review article just a few weeks ago, there are cases of erroneous death diagnosis.  But given the independent confirmation and the length of time here, this case is extraordinary.

Tuesday, September 30, 2014

Jahi McMath "Doing Well" 10 Months after Death

The Terri Schiavo Life & Hope Network just released this update on Jahi McMath.
"We are often asked and receive frequent emails from supporters wanting to know about Jahi McMath, so I wanted to give a quick update. It has been almost 10 months since Jahi was declared 'brain dead' by the State of California. As in any case with someone who has experienced a profound brain injury, progress can be very slow. Nonetheless, Jahi is doing well and continues to show signs she is improving. We remain in touch with the family and I am sure they are grateful for all of your ongoing prayers. Please continue to keep Jahi and her family in your prayers."

Judge Orders Baby Off Life Support, Despite Mom's Objections

Today, Ms Justice Russell (Family Division, UK High Court) ruled that a one-year-old boy with brain damage should be taken off a life-support machine despite his parents' pleas to keep him alive.  (Daily Mail 1)

The NHS foundation trust which runs the hospital where the youngster is being cared for brought the petition. 

The boy was born prematurely by emergency Cesarean section in 'poor condition' and he required resuscitation and ventilation at birth.  In late 2013, he had suffered an "acute cardiorespiratory deterioration" apparently due to medical error.  This required him to be mechanically ventilated once again.  He has been ventilator dependent and his condition had not improved despite 'on-going intensive care.  Doctors concluded that:  (1) he baby had suffered irreversible brain damage, (2) there was no prospect of recovery, and (3) it was in the youngster's best interests for live-sustaining treatment to be withdrawn.  

The boy's devout Christian parents disagreed. The parents would not agree to the withdrawal of ventilation. They believed that their son responds to them.  As committed and devout Christians they did not feel they had the right to agree to life-sustaining treatment being withdrawn.  They believed that given time God may work a miracle.  (Daily Mail 2)

  • "At the end of the day he is still alive. The ventilator is helping and supporting that life. Where there is life, I don't think you should get the right to determine whether that should be taken away."
  • "We believe that (he) does respond to us as parents. We don't feel that the trust has the right to end his life because he has got brain damage."
  • "Miracles do happen."

  • "Even though he is going through all these problems, he still knows ... what is going on. This child still feels. I spend a lot of time with him, talking to him. I know when he is listening ... We know he is reacting to certain things."
  • "He still has life. We don't have the right, as parents, as individuals, to take this privilege from him."

The judge gave the trust permission to withdraw life-sustaining ventilation.  She said that she had reached the decision 'very sadly' and with 'great reluctance'.  She said she had to gauge what was in the little boy's best interests after balancing medical evidence against his parents' views.

Sunday, September 28, 2014

Festering Mistrust over Brain Death

I was disappointed to see this newsletter article from the Life Issues Institute and the Terri Schiavo Life & Hope Network titled "The Market for Brain Death."  

The primary focus seems to be on aid in dying, particularly involuntary or non-voluntary aid in dying.  But both the title and the article go on to suggest that unilateral judgments regarding life-sustaining treatment or aid in dying, "may lie behind what seems to be an increase in the 'brain death' diagnosis."

As I recently noted, treatment disputes after diagnosis of brain death do seem to be on the rise.  Unfortunately, messages like this sow the seeds of mistrust and distrust that will spawn even more disputes.  

Saturday, September 27, 2014

Congress Urges CMS to Adequately Reimburse Physicians for Advance Care Planning

This week, 34 Members of the House of Representatives, sent a letter to Centers for Medicare & Medicaid Services (CMS) Administrator, Marilyn Tavenner, to adopt recommendations that would adequately reimburse Medicare providers for having voluntary discussions about end-of-life care and planning with patients.

Currently, the time doctors spend having discussions with their patients about end-of-life care and planning is not reimbursed under Medicaid and Medicare. Without this incentive, these conversations are not happening.

The AMA recently created dedicated CPT codes to capture end-of-life planning conversations.  The letter urges CMS to include the codes in the Medicare Physician Payment Schedule for 2015. 

Friday, September 26, 2014

Australian Medical Association Position Statement on Medical Futility

Earlier this month, the Australian Medical Association released a new "Position Statement on End of Life Care and Advance Care Planning 2014." The statement outlines policy on issues such as medical futility, decision making capacity, advance care planning, artificial nutrition and hydration, bereavement, workforce, and community awareness.

Futile Treatment is defined as "Treatment that no longer provides a benefit to a patient or treatment where the burdens of treatment outweigh the benefits. Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriate."

Here are the three sections on medical futility:

"7.1  Doctors should understand the limits of medicine in prolonging life and recognise when efforts to prolong life may not benefit the patient. In end of life care, medically futile treatment can be considered to be treatment that gives no, or an extremely small, chance of meaningful prolongation of survival and, at best, can only briefly delay the inevitable death of the patient."

"7.2  Whilst doctors are generally not obliged to provide treatments that are considered medically futile, where possible it is important that the doctor discuss their reasons for determining a treatment to be medically futile with the patient (and/or the SDM, carers, family members) before deciding the treatment should not be offered."

"7.3  In some cases, a treatment may not offer a benefit in terms of curing a patient’s condition, or significantly extending life or improving quality of life, but it may benefit the patient in other ways. For example, a ‘medically futile’ treatment may briefly extend the life of the patient so he or she can achieve their wish of saying goodbye to a relative who is arriving shortly from overseas."

Wednesday, September 24, 2014

POLST - New US Map of POLST Paradigm Programs

The National POLST Paradigm Task Force has updated its national map of POLST programs.  Here are the definitions of the different statuses.  

Mature status - the highest level of endorsement by the NPPTF is reserved solely for states with statewide POLST programs that, among other requirements are the standard preferred method of advance care planning for persons with advanced illness or frailty. Mature POLST programs are used by 50% or more of hospitals, nursing homes, and hospices in each region (as defined by established criteria such as EMS, Department of Health, or the Dartmouth Atlas) of the state. These programs are actively gathering data for quality assurance programs and have considered centralized POLST databases.

EndorsedThe NPPTF will endorse state POLST programs when they have developed and implemented a POLST program and form meeting the NPPTF standards. Endorsed programs are POLST programs that have become standard components of advance care planning in their location. These programs have addressed legal and regulatory issues associated with POLST, and have developed strategies for ongoing implementation and quality assurance.

Developing - Programs are recognized as “developing” when they have both: (1) submitted the Developing State Status Application form and (2) presented the state’s POLST form and progress to the NPPTF’s Developing State Assistance Committee (DSAC). Developing POLST Paradigm Programs may be at various stages of development, ranging from the initial design of a POLST form to active usage of POLST forms, but are working towards the goal of implementing the POLST program statewide. In general, programs at this step are starting to contemplate addressing all Seven Core Elements of Sustainability.

NonconformingMaryland legislation that went into effect in 2013 mandates the completion of POLST forms for certain patients. Their program violates the POLST Paradigm’s tenant that completion of a POLST is always voluntary.  The current Massachusetts form does not include the “limited intervention” section that is the heart of POLST and where data documents the highest level of effectiveness but, instead, has a variety of questions. This lack of structure in the form causes confusion and lacks clarity and likely reduces effectiveness in honoring patient wishes.  The current Vermont form is cumbersome and unclear, potentially causing confusion. It also incorporates elements of the state’s advance directive statute, mentioning the concept of futility with respect to the CPR/DNR order section.

No ProgramWhen states are exploring the development of a regional or statewide POLST Paradigm program they can formally connect with the NPPTF. This level is for states not yet ready to complete the Developing POLST Paradigm documentation but who would like to participate in the National POLST Paradigm Program (e.g., receive emails from the national office, attend various education sessions put on by the National Office or the NPPTF, etc).