Disability groups seek to intervene in teen's plan to die

APPLETON, Wis. — Disability rights groups are attempting to intervene in an Appleton teenager’s decision to cease medical treatment and die of the incurable disease that has racked her body and left her in constant pain.

Carrie Ann Lucas, executive director of the Colorado-based Disabled Parents Rights, said her organization is one of several that have asked for child-protection authorities to investigate the case of 14-year-old Jerika Bolen, whose decision to enter hospice care at the end of summer gained national attention.

“A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child,” Lucas said Tuesday.

Jerika suffers from Spinal Muscular Atrophy Type 2. She and her mother, Jen Bolen, said earlier this summer that Jerika would go without her ventilator while under hospice care in early September, essentially scheduling her own death. Her story drew an outpouring of support when her family, friends and her care team held a prom, dubbed Jerika's Last Dance, in late July.



On Tuesday, Jen Bolen asked for privacy and declined further comment about her daughter's medical care.

Melissa Blom, director of Outagamie County’s Children, Youth and Families Division, also declined comment on whether her office has received a referral or opened an investigation, citing the confidentiality of child-welfare cases.

Jerika was diagnosed as a baby with Spinal Muscular Atrophy, often referred to as SMA. The incurable disease destroys nerve cells in the brain stem and spinal cord that control voluntary muscle activity. Jerika has never walked, and today her movement is mostly limited to her head and hands.

Jerika said she’s in constant pain — about a seven on a scale of one to 10 on her best days. She expressed concern that her pain and the need for more invasive medical interventions would grow as her body continues to deteriorate.

 

Jerika Bolen and her mother Jen are illuminated by green fireworks Saturday, July 2, 2016 in Menominee, Mich. Danny Damiani/USA TODAY NETWORK-Wisconsin; (Photo: (Photo: USA TODAY NETWORK-Wisconsin))

Lucas, who said she is unaware of whether a child-protection investigation has commenced, said her organization is not asking that Jerika be removed from her mother’s care.

“Foster care will not solve this problem,” she said.

But Jerika is in need of mental health care, not additional support for ending her life, Lucas said.

Lucas said four organizations sent a joint letter to the Wisconsin Department of Children and Families asking for intervention, and she followed up with a phone call to Outagamie County's Children, Youth and Families Division. The other organizations are Not Dead Yet, NMD United and the Autistic Self Advocacy Network, Lucas said.

Debate began to bubble as many reached out to celebrate Jerika's life in July. More than a 1,000 people arrived at a prom thrown in Jerika's honor as a last wish. Police and firefighters provided a motorcade. She received cards and gifts from around the world and shout-outs from a number of celebrities.

But her decision also drew pleas that she change her mind, including from adults with Spinal Muscular Atrophy.

Jen Bolen, in a July interview, said those critical of Jerika's decision fail to understand the depth of medical intervention it’s taken for her to reach her teenage years.

"I was fighting for my kid," she said. "I never thought I'd be on this side of things."

Lucas, meanwhile, said Jerika's decision — and the support she's received — is an important issue to the disability rights community. Those with disabilities have equal rights to child protection, which includes efforts to ensure parents are acting in their children’s best interests, she said.

Though Jerika's disease is progressive, it isn’t “acutely terminal,” Lucas said, and she questions whether simply withholding treatment would be sufficient to end her life quickly.

 

 Jerika Bolen laughs with friend Mackenzie Falck as they watch fireworks together with Haley Paradiso and Hanna Gove during an Independence Day celebration at Jerika's grandparents home Saturday July 2, 2016 in Menominee, Mich.    (Photo: (Photo: Danny Damiani/USA TODAY NETWORK-Wisconsin))
 
When it’s a decision of death, “it’s never in the child’s best interests,” Lucas argued.

Jerika’s story is far from the first time end-of-life decisions have drawn controversy.

Perhaps the most famous case was that of Terri Schiavo, a brain-damaged Florida woman who was taken off of life support in 2005 after a family battle and a national debate over decision-making authority.

Diane Coleman, executive director of the anti-euthanasia organization Not Dead Yet, compared the Bolens’ situation to that of Julianna Snow, a 5-year-old Oregon girl who was given the choice by her parents on whether to continue medical treatment.

Snow, who had an incurable neurodegenerative illness, chose against further hospitalization and died in June after spending 18 months in hospice care.


Coleman questioned both cases based on their ages. But her organization views euthanasia as a form of discrimination against the old, ill and disabled.

“I worry that there’s an attitude in the health care profession that really writes people off with disabilities,” she said. “I worry that people like Jerika and Julianna are in the throes of that, and without adequate support.”

The withholding of treatment from the disabled was recently subject of court scrutiny in Wisconsin based on a lawsuit brought by the Disability Rights Wisconsin organization.

In 2009, the organization sued five doctors from UW Health over their withholding of treatment from two developmentally disabled patients, including a 13-year-old boy they had placed in hospice care. Lawyers argued the boy would have recovered from pneumonia.

The case was dismissed at the circuit court level, and in 2014, the Wisconsin Court of Appeals upheld that decision, putting an end to the lawsuit.

Attorneys for Disability Rights Wisconsin argued “parents had no right to direct the withholding or withdrawal of life-sustaining medical treatment to their children who are not in (a persistent vegetative state.)”

The court rejected the organization's arguments that withholding of care violated the patients' due process rights.

Lisa Pugh, public policy director for Disability Rights Wisconsin, couldn’t be reached for comment on Tuesday.

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Disability groups seek to intervene in teen's plan to die

Should doctors make end-of-life medical decisions?

The good news is that we are living longer.  The bad news is that the longer we live, the more likely it is that we will encounter significant health problems and develop an impaired decision-making capacity to make our own medical decisions.

What happens if we survive our spouse, our children, or are otherwise estranged from family who may be able to make medical decisions for us?

As the number of incapacitated people increases, professional guardians are becoming more common.  These surrogate decision makers are appointed by a judge and often have no preexisting relationship with the patient.

But the relationship may not always work out well for the patient.  Guardians are often reluctant to limit the level of medical care and choose the safer path of aggressive care rather than become involved with potential legal issues involved with end-of-life care.

Researchers suggest in the current issue of JAMA: Internal Medicine that while doctors may be able to help, they are also placed in a difficult position.

“Physicians are in a unique position to assist guardians with these difficult decisions and to collaborate with them to protect the rights and dignity of the vulnerable persons whom guardians represent,” according to the authors, led by Andrew B. Cohen, MD of the Yale School of Medicine. “However, physicians are often uncertain about whether guardians are empowered to withhold treatment and when their decisions require judicial review.”

The authors looked at guardian statutes in the United States and found a lack of consistency that creates confusion for patients, guardians and physicians.  Among their findings:

• 37 states have “no specific language about a guardian’s authority to make end-of-life decisions.”
• 8 states “prohibit a guardian from making end-of-life decisions without judicial review.”
• 5 states allow guardians to make end-of- life decisions, but each law contains separate contingencies. For example, Oregon’s statute “details specific situations in which artificial nutrition may be withheld by a guardian.”

“Our results show that laws governing professional guardians and end-of-life decisions are inconsistent and incomplete and add to the evidence that the legal approach to decision making for incapacitated persons in the United States is far from uniform,” said the authors.

It is obvious that end-of-life care and guardianship laws need to be made consistent throughout the U.S. and known throughout the medical community.  However, such uniformity is unlikely to happen any time soon.

In that case, the authors suggest as a solution to “allow treating physicians to make decisions in an incapacitated patient’s best interests when the patient’s preferences are not known by the guardian.” This is the approach used when an incapacitated patient has no identified decision maker.

However, such responsibilities may present conflicts of interest for the physician, in which case the hospital can step in and use an appointed ethics committee to make decisions.

Another approach, according to the authors, is to establish formal roles for the physician and guardian to work together. “The treating physician would suggest a plan of care in the patient’s best interests, and the guardian would ask clarifying questions, ensuring that all relevant perspectives were considered.”

End-of-life care is becoming increasingly complex with fragmented laws that must be clarified and roles specifically defined for physicians in order to provide the best possible care for an aging population.

By Brad Broker

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Should doctors make end-of-life medical decisions?

Dying In America: Care Should Be Kinder

Editor's note: This article is part of a year-long project about aging well, planning for the changes aging brings and shaping how society thinks about aging. 

Last week’s release of the Dying in America Report adds to the discussion those of us in the field have been having for years. Its 507 pages clearly demonstrate that our country's system of delivering care to the elderly is badly broken.

The Institute of Medicine’s (IOM) report is especially timely as the number of those suffering from “some combination of frailty, physical and cognitive disabilities, chronic illness and functional limitations,” grows.

We need more care that puts these patients — no matter their wealth or cultural background — at the center of care.

(MORE: Help Parents Avoid Unwanted Medical Treatment)

Another key point the report makes is that we need to understand how care needs have changed and why Medicare should support long-term care.

To paraphrase Hamlet, the health care system is out of joint. It simply has not kept up with the change in disease patterns. We have built the equivalent of a medical Maginot Line. Just as the French built fortifications to refight World War I only to have them totally circumvented by armored columns, we remain geared up to fight against acute disease in an era dominated by chronic illness.

The Dying In America report's finding that we spend large amounts on ineffective (and often dangerous) care at the end of life is but one symptom of this much larger problem.

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Dying In America: Care Should Be Kinder

Why Nursing Homes Are The Worst Places For Our Elderly

If you're thinking about sending your parent to a nursing home, it's time to seriously reconsider.

Facilities for the elderly, originally created as a by-product of an effort to free up hospital beds, haven't improved much  since then. Behind their beige-colored, soup-smelling facades lurks an even nastier problem: Our society has absolutely no idea what to do with its elderly.

Once an aging parent loses the ability to function on her own, it becomes the child's responsibility to ensure she's taken care of. For many, that means finding an atmosphere that guarantees her safety.
But those priorities are completely misplaced, at least according to Atul Gawande. In his new book, Being Mortal, Gawande describes how our misguided choices have trapped the elderly in places of boredom, depression, neglect, and  abuse.

There might be a solution yet. Gawande suggests that instead of making healthcare decisions based on how they make us feel (i.e.: Is my loved one safe?) we should make decisions based on how they'll affect our family member's quality of life.

This means choosing a facility that will also respect these choices. Instead of selecting a facility that will force an older man who has fallen recently to use a wheelchair, for example, pick a place where a staff member will ask him how much being able to walk — even with the help of a cane or walker — means to him. Preserving that ability could mean all the difference in his life, even if it means he's more at risk of a slip.

Gawande speaks from experience, both personal and professional: When he's not performing surgery at Brigham and Women's Hospital in Boston or writing for the New Yorker, Gawande teaches at the Harvard School of Public Health and Harvard Medical School. When his own father (also a surgeon) was diagnosed with a massive spinal tumor, Gawande helped him grapple with a variety of end-of-life healthcare decisions, from when he should stop working to when he should go under the knife (if at all).

Healthcare spending on the elderly is immense, but we shell out the most on our deathbeds. About 25% of all Medicare spending occurs in a person's last year of life, according to a recent review in the journal Health Affairs.

While we spend the most money trying to stave off death, we waste precious time we could have used to make life as good as it can be in our final years. And life can be good — something that's finally becoming more of a focus in eldercare. "Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does," writes Gawande.

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Why Nursing Homes Are The Worst Places For Our Elderly

Pennsylvania: When a Guardian Decides on Life or Death

In May, Garry McGrath said, he and the staff of his Washington County personal-care home pleaded with 47-year-old Bonita Carter to continue having life-sustaining dialysis.

But Carter, who had a mental illness in addition to renal disease and frequently believed dialysis was a ploy, refused.

Carter died June 1, but a disagreement over her care continues. Mr. McGrath demanded that the state review Carter's death, saying her court-appointed guardian, Distinctive Human Services of Cambria County, agreed to let her cease treatment when it should have worked harder to keep her alive.

"This is about a human life that was terminated prematurely," he said in a Dec. 20 email to Mark Knouse, special adviser to Public Welfare Secretary Beverly Mackereth. When Carter consented to dialysis, Mr. McGrath said, she was energetic enough to walk into town a mile away.

Carter's story is a window on the complex interplay of physical- and mental-health care and on the challenges of guardianship, which can involve making life-or-death decisions for people unable to look after themselves. Kim Grier, president of the Centre County-based National Guardianship Association, said guardians can do only so much when clients refuse care.

"Guardianship does not give the guardian the authority to force somebody to do something they don't want to do," she said. "Guardianship does not remove free will from a person."

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When a Guardian Decides on Life or Death

Minn. high court to decide end-of-life case



MINNEAPOLIS (AP) — The Minnesota Supreme Court will decide whether guardians have the legal authority to take their wards off life support.

 

The high court agreed Wednesday to review the case of Jeffers Tschumy. That means the court will for the first time in nearly 30 years revisit an end-of-life issue that could affect many of the more than 12,000 Minnesotans under guardianship who don't have health care directives, the Star Tribune reported Saturday (http://bit.ly/1fLlSbP ).

 

The key issue is whether guardians must receive a judge's approval to remove life support, or whether guardians already have that power.

 

Tschumy was a mentally disabled man with no family and no health care directive who had been under guardianship since 2008. He choked on food last year and was declared severely brain-damaged with little hope of recovery.

 

The Allina Health System requested that a judge allow him to be removed from life support, either by clarifying that his guardian had the right to make the decision, or by issuing an order allowing his removal from life support. District Judge Jay Quam denied the guardian's request for sole power to make that decision, but authorized the termination of Tschumy's life support. He died.

 

Quam wrote that guardians have a strong case to make end-of-life decisions under a state law that grants them the power to allow or withhold medical care, but he said the law does not specifically allow them to end life support. Until the Legislature decides to address the issue, he wrote, only judges or legally authorized representatives can order life support removed.

 

Last summer, the Minnesota Court of Appeals reversed Quam's ruling, reasoning that the final authority lies with guardians and that end-of-life decisions shouldn't be dictated by the court. The appeals court relied on a 1984 Supreme Court ruling.

 

The state attorney general's office, which weighed in with briefs supporting a mandatory judge's sign-off, is expected to do so again before the Supreme Court.

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Minn. high court to decide end-of-life case

State court of appeals reverses ruling that prevented guardians from ordering their wards from life support

Legal guardians have the authority to order their wards to be disconnected from life support, according to a state Court of Appeals ruling Monday that said the end-of-life decision shouldn’t be dictated by the courts. 

“This supports our position that guardians don’t need to go back to court to get consent to terminate life support,” said Charles Singer, the attorney for the professional guardian appointed for Jeffers Tschumy, the man at the center of the case. “We’ve been operating under that assumption for 30 years.”

 

Monday’s decision overturns a Hennepin County District Court ruling that said end-of-life decisions are too important to be made by a guardian most likely appointed years before to handle matters of daily living.

 

Minnesota has 12,000-plus wards; the decision could affect those who don’t have health care directives in place spelling out their end-of-life decisions. It is the first time such an issue has been addressed in the state courts.

 

Tschumy, 57, was mentally disabled and living in a group home under the guardianship of Joseph Vogel since 2008. In April 2011, he choked on food and was declared severely brain damaged with little hope for recovery.

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State court of appeals reverses ruling that prevented guardians from ordering their wards from life support

Tonight on T.S. Radio: Minnesota Courts Sanction Guardian Ordered End of Life

In what has to be a predatory guardian's wish list come true, the Hennepin County District Court of Appeals, just sanctioned the ending of inconvenient lives on behalf of the guardians.

Claiming in their opinion that the statutes somehow magically indicated that the guardians had this right as an extension of their total control of the victim, was a direct assault on the rights of families and individuals.

After reading the statutes cited by the court and their statements to the effect that they had considered all pertinent statutes, how this court concluded that a guardian had an otherwise unrecognized right to end the life of an individual, is beyond me.

Claiming this decision would be the result of consulting with family members and medical personnel, had to have been a joke. Anyone exposed to the corruption of the probate/guardian system knows that the family is immediately cut out of the picture and is not consulted about anything. In most cases, the family is not even informed of any decisions.

The Court made special mention of the notion that it might be too emotional, or financially a burden for the family, to allow the victim to continue on.

The translation for this is: The estate has been depleted by guardians, attorneys and anyone else who could get their hooks in it. Insurance has reached its limits and Medicare/Medicaid will not pay any more. 14,000 individuals have been placed under guardian/conservator status in Minnesota. The massive transfer of personal assets to the guardian from the estate of the victim, can now be brought to a final end by ending the life of the victim..... without court permission or intervention.

What is YOUR life worth?

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Guardians Can Order End of Life Support

Court: Guardians can order end of life support

MINNEAPOLIS -- A Minnesota appeals court has ruled legal guardians can order the end of life support for their wards.

The ruling overturns a Hennepin County District Court finding that end-of-life decisions are too important to be made by the guardian alone. The appeals court disagreed, saying those decisions should not be dictated by the courts.

The case involves Jeffers Tschumy, who was mentally disabled and living in a group home. In 2011 he was declared severely brain damaged after choking on some food. A Hennepin County judge denied his guardian the right to end life support, but ordered that it be discontinued.

Read more here: http://www.sacbee.com/2013/07/30/5607678/court-guardians-can-order-end.html#storylink=cpy

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Court: Guardians can order end of life support