Statement On Mourning the Death of Jerika Bolen

Today disability advocates mourn the death of Jerika Bolen, a 14-year-old black, gay teen with spinal muscular atrophy type II (SMA), who died in hospice after requesting help to end her life. Earlier this summer, a call for donations to support her dream of a “last dance” prom in her honor focused national media attention on her request to die, which was characterized in the media as “brave” and “inspirational.”

SMA Type II is not a condition that is typically fatal in children and teens. In fact, while some people with SMA die in younger adulthood due to respiratory complications, people with type SMA Type II often live into their 60s and beyond.  Certainly, SMA would not result in the death of a fourteen-year-old who is receiving appropriate medical care. Our experience as disability rights advocates, many of whom have SMA and similar neuromuscular conditions, is that people with Type II SMA and the level of function that Jerika had as a teenager live long into adulthood.

While some media have attacked disability advocates who called for an investigation of the extremely questionable medical care provided to Jerika, it would appear that no authorities felt it necessary to obtain answers to the many questions the reported facts raise. In the midst of our shock, grief and despair at a system that would so callously throw away the life of a beautiful disabled girl, we have asked, and continue to ask, those questions.

Regarding physical pain . . .

What was the cause of Jerika’s reported extreme physical pain? Contrary to media misinformation, pain is not characteristic of SMA Type II, so what caused her pain?

Did Jerika have any competent doctors who specialized in SMA Type II or neuromuscular disabilities?

What explains the reported 30-38 surgeries that Jerika experienced between ages 8 and 14? This number of surgeries is highly unusual for people with SMA Type II. Were these surgeries the source of her pain?

Were pain relief experts ever consulted to address Jerika’s pain? Why did she wait to take medication until her pain was at a level 8 or higher on a scale of 10, while pain management physicians advise taking medication much earlier, “nipping it in the bud” to prevent pain from reaching that level?

Regarding depression and emotional pain . . .

Given the well established ways that suicidal ideation in teens is addressed to prevent tragedy, what forms of counseling or support were enlisted to address Jerika’s desire to die?

Was any qualified professional trained in teen suicide prevention brought in to counsel Jerika? Were any professionals working with Jerika aware of studies finding that quality of life is not correlated with physical impairment or use of non-invasive breathing support?

From whom did Jerika get the idea that she could go into hospice and get assistance to end her life? She had reportedly spoken of this off and on for a few years. What were the motivations of any adult who gave such an idea to a child?

Was any qualified professional with a similar disability, someone familiar with the emotional issues facing a black, disabled, gay teen, brought in to counsel Jerika?

Regarding the systemic medical and legal issues . . .

Why do Wisconsin governmental authorities allow children with non-terminal disabilities to have their lives ended based on adult decisions to withhold medical care, while this is not permitted for non-disabled children?

What were the qualifications of the doctor who ordered hospice for Jerika? Was it the same doctor or facility that conducted the extreme number of surgeries?

Why would a hospice provider participate in ending the life of a child who is not terminally ill? Besides discontinuing Jerika’s nightly bipap breathing support, what additional steps resulted in her death after only 18 days from her scheduled entry into hospice?

Disability advocates who mourn Jerika’s untimely death would like these questions to be answered, but we’ve seen the media frenzy in almost exclusively one-sided applause for her suicide, no questions asked. Our grief at the tragedy of her loss is exponentially magnified by the certainty that the story told in the press will inspire others with disabilities and their parents to repeat this tragedy.

Those of us with disabilities dream of equality and justice. Jerika Bolen deserved better quality health care and the same suicide prevention that a non-disabled teen would receive. We ask one last question: What might have happened if Jerika’s request for a “last dance” had been met with overwhelming public and media encouragement to live instead of a massive thumb on the scale in support of her death?

8 thoughts on “Statement On Mourning the Death of Jerika Bolen

  1. It is frightening to see so many questions, to see so many contradictions. Her life, as with all others, had value and it feels as if it were taken from her despite her “wish” for it to happen. A dangerous cautionary tale for all of us.

  2. The practice of the premature termination of handicapped citizens in Edmonton, Alberta, Canada is evident to me after our family’s experience with the health care system. Over the past five years I have witnessed the failures in the system with predictable detrimental results for my severely handicapped sister who was failed multiple times. Repeated identical adverse events sent her to the hospital where doctors were willing to prematurely terminate her.

    If my severely handicapped sister did not have strong advocates who were willing to work for years to first question the “do not resuscitate” orders found on her medical records from the Grey Nuns Hospital and then continually request adherence to the personal directive requirements my sister had established when she entered the Good Samaritan Extended Care at Millwoods in 2010, my sister would be dead.

    For those citizens who do not have such strong advocates, it is my opinion that the system is designed to obey the bureaucratic requirements of cost savings. Repeated admissions to emergency and ICU cost the system major bucks. Cost are important but so is good medical practice. If doctors were so concerned about the costs of my sister’s care then why didn’t they do the required medical investigations to determine if there were problems in her BIPAP, her BIPAP use or other factors? But of course no one bothered to determine why there were so many hospitalizations. Nope It took me–a stay at home mum to do the BIPAP data card downloads for a year to figure out that staff had failed to put on her machine on two occasions. These findings were confirmed by two PPIC (Protection for Persons in Care) abuse investigations at Alberta Health.

    Why did doctors not do the medical investigation required to rule out all problems with equipment, patient and staff treating the patient? Good question. All they wanted to do was to end the problem of repeated costly hospitalizations of what they had designated as a “non-compliant” patient. Why else would doctors team up at the Grey Nuns Hospital and be supported by their colleagues at the University of Alberta Hospital in maintaining the “do not resuscitate”, “do not intubate” and “no ICU” status of my sister? Doctors seem to work together to support their colleagues’ orders even when these orders are contrary to the legal requirements of the personal directive, are contested by the family and do not conform, in my opinion, to good medical practices and the ethical performance of professional duties.

    This situation of risk continued for years while three health ministers fiddled (Mr. Horne, Mr. Mandel and Ms. Hoffman). Health ministers appear to be talking heads rather than folks who resolve problems because they simply told me to go to folks at AHS and a fat lot of good that did for me as AHS was not able to help either. How could AHS help? They can’t apparently force any private continuing care provider to do what is required. What was required was an integrated care plan that would have a compliance program that required BIPAP data card downloads reviewed monthly to ensure use. What was required was staff training so that staff knew how to operate the BIPAP machine (turn it on). What was required was for Alberta Health to do the work of oversight and provision of penalties but as usual in Alberta, no one cares and there are no penalties for non-compliances.What happens is that there are public media events where the health minister will say that “abuse will not be tolerated”, AHS and/ or Covenant Health will respond that all non-compliances are being handled and the public will feel that matters are under control. After the initial scrutiny by all concerned, the public falls asleep and the families are left by themselves to deal with the system with the sunny façade but less than adequate performance.

    The truth proselytized by the system is not quite this sunny. Actually abuse is tolerated. Death of residents in care is tolerated. Abuse and death cases may be investigated by the PPIC (Protection for Persons in Care) office resulting in the generation of whitewashed reports to reassure the public that the problems have been resolved. Health advocates, the mental health advocate and now the seniors advocate can be called upon to offer words of wisdom without doing a darn thing.

    As for the folks who raise these issues publicly–the family members and advocates-well they get burned at the stake of government/health authorities/continuing care establishment. Family members / advocates who speak publicly are retaliated against by retribution acts of banning (separated from the very people they are trying to protect), legal threats and lawsuits. Punishment of this sort makes families reluctant to raise issues, continue with advocacy work or discuss these problems publicly. For the most part, the health authorities aren’t there to help families but to protect the image of the system as being in tight control of the work being done. In our family’s case there were indications that Alberta Health was fully aware of the problems and was doing exactly what? Doing audits. Getting AHS involved. What was AHS doing? Mentoring staff.

    These acts of audits, mentoring and on site support by nurse practitioners from AHS are obviously part of the solution but there needs to be real penalties for failures to care for residents. Why don’t we have licenses yanked and continuing care places closed down? Why do we only have public facilities like the Michener Centre being at risk of closing while private continuing care is ramped up?

    Why do we have a system that is rigged to ensure that these problems are kept out of the public arena? Without public discourse how will this broken system be fixed? I feel that the system is designed to silence the advocates and limit any public discourse of the problems faced by handicapped citizens in the system. The solution to this silencing of families should be exposing these failures to the public.

    Families must be brave and speak in public about the problems they have experienced. Families must go to the media and make these failures public. Families need to go on social media to inform other families. Families need to write about these experiences on their blogs as I do. Families need to write books as one family has done here:

    On My Mother’s Behalf
    A Daughter’s Story

    Media Statement
    March 14, 2012
    Public Interest Alberta
    February, 2012

    Face Book
    On My Mother’s Behalf Twitter
    What would you do if you could no longer care for your mother and after placing her in a long term care facility, you found her being neglected and abused? More importantly, what could you do?
    ‘On My Mother’s Behalf’ is the story behind the headlines as a daughter chronicles her struggle with a health care system that fails our seniors.
    Many families continue to suffer in a system that puts politics and profit above all else. ‘On My Mother’s Behalf’ is one family’s story, but sadly, it is not unique.
    Follow the story behind the headlines:
    blackmail;top political leaders ‘washing their hands’ of the situation, while other leaders wanting a front row seat;politicians debating her private care eviction in the legislature;nearly being thrown in jail;
    lawyers holding back disclosure;witnessing their mother’s neglect and abuse by those entrusted to her care;and government watchdogs unwilling to fulfil their mandate.
    Edmonton Journal, July 1st: #1 BESTSELLING NON-FICTION BOOK! @EJ_Arts
    St. Albert Gazette Review, June 22:
    Media Headlines From March 2012
    Alberta Family Demands Answers after Elderly Mother Dumped at ER
    Public Interest Alberta
    Family Protest 80-year-old, care home eviction
    CBC News
    Mom’s private-care cost shock family into Action
    Global News
    Media focus on Senior Dumped at Emergency Ward
    signals more trouble for Redford Tories
    Woman with Dementia 80, Dumped at ER Family Claims
    CTV News

    This continual revelation of systematic problems that are occurring despite all the media spin might result in the public demanding change. This has not happened to date in Alberta despite all the work of Ruth Adria here:

    Ruth Adria has worked tirelessly to document the failures in the system. The response of the politicians has been to create useless legislation that gives the appearance of helping citizens but in reality lack any sort of effective mechanisms to change the system. Why? The government doesn’t want to have legislation for advocacy offices that allows them to ensure that their recommendations are followed because this might place an unnecessary burden on continuing care providers and this can’t be tolerated of course.

    The push is always to protect government, the health authorities and the continuing care industry in Alberta. This has been going on for decades and was kept in place by legal intimidation of families. The shameful failures of the PCs in government are now continued with the NDP folks who haven’t done anything to change the powerlessness of families when faced with the power of the medical establishment, the politics of the health authorities (AHS and Covenant Health) and the inability and unwillingness of advocate bodies that are supposed to help us like the Health Advocates Office.

    All we get are the appearance of a functional system when in reality the system is broken for our most vulnerable citizens, families are afraid to speak about their experiences for fear of lawsuits and there is a united front with reference to the system which is advertised to us as collaboration between government, continuing care and the health care system. This “partnership” ensures that the system players are all partners with each other but who partners with the citizens? Another good question. I am of the opinion that the system partners see the citizens as customers to be managed and as such the customers are exposed to the continual advertisements of good performance of the system while adverse events are not reported as far as I can tell, adverse event protocols are not in place at all facilities and adverse events are not seen as experience to change practices so that repeated adverse events do not occur but as legal problems to be hidden.

    The failures of adverse event reporting, follow up and monitoring to ensure best practices is something that needs to be addressed by the government of Alberta. Until this happens we will have continual problems with families finding abuse and death while the system pretends this is all part of the risks of group care. There needs to be ramped up oversight of facilities, real penalties for non-compliances, and removal of businesses that cannot provide safe decent care for our most vulnerable frail citizens. Its shameful that the government audits according to appointment and fails to regulate the problems found with removal of the license to operate a nursing home but instead continually pays from the public purse to amend problems to compliance. What happens when the same facility has the same non-compliance yet again? Will we pay for mentoring staff to infinity at these non-compliant facilities?

    Why is there no intelligence in the system? Why didn’t anyone think of establishing compliance programs for citizens who have no insight? How would you expect someone who is incapable to be capable without a care plan that reflects additional strategies to support that person? Its so dumb.

    In my sister’s case, she was all on her lonesome as a despised handicapped citizen who was not compliant. No one had thought to set up a compliance program for her. No one had thought to set up a compliance program for staff. No one had even thought of setting up an integrated care plan so that her needs would be met. All they wanted to do was the “do not resuscitate” choice.

    It was only when AHS hired an ethicist who asked the doctors why they were prepared to repeatedly resuscitate drug overdose cases but not a woman suffering from COPD /sleep apnea exacerbations was there any sort of wavering in the united front of these highly trained professionals in their premature termination stance. You gotta admire doctors who want to terminate a “non-compliant” patient. They are steadfast until they are told that perhaps their decision isn’t ethical.

    Make no mistake about it–premature termination of patients with handicaps happens in Alberta–because it was happening for my sister. And if handicapped patients don’t have advocates who are experienced in the medical arena they will be terminated in this manner even when the family protests as we protested at all levels of the system for years.

    Unilateral termination decisions by doctors in this manner especially when it concerns a woman without capacity is unacceptable and unethical. It should not be tolerated by the government of Alberta that has been sitting on its bum doing nothing. The response of government is to go complain to the professional bodies and to the Ombudsman. This is rich. The government wants us–the powerless citizens to go into the bureaucratic maze and spend years there to find ourselves ultimately at a dead end of the Shauna McHarg sort. They really made Shauna run the bureaucratic and legal gauntlet for years and for what? She is still at the same place she started at.

    Children banned from seeing her parents
    Home > Dependent Adult Abuse > Children banned from seeing her parents
    February 20th & 21st, 2014 @ 10:00 AM Thursday & Friday EDMONTON COURT HOUSE – Court of Queens Bench
    Shauna McHarg, who is the subject of banning in regard to her parents who are residents at the Covenant Health Edmonton General Long Term Care Centre, has not been allowed to see her father for close to two years and is allowed to see her mother for one hour each day, Monday to Friday, between 3:00 PM & 4:00 PM.
    No exceptions are permitted for Christmas, Easter, Birthdays or any special occasions. Attending at the court as observers will be individuals who have also been disallowed to visit loved ones.
    This is a big issue in the care of the elderly, that family & friends are often disallowed to attend to their loved ones. If they persist, believing they have a right to visit a publicly funded institution (after all this is Canada), Peace Officers, Police or RCMP are called and the visiting person may be treated like a common criminal, may be issued a Trespass ticket ($275.), handcuffed and removed. Under the TRESPASS TO PREMISES ACT no reason has to be given for the banning.
    A verbal order by a security officer is enough to totally ban an individual for five years. The Act is used to control, bully and abuse.
    Shauna McHarg, ban continues.
    Home > Blog > Shauna McHarg, ban continues.
    In a precedent-setting decision, Alberta’s Court of Queen’s
    Bench Justice ruled that the province’s Health Information
    Act (FOIP) protects any information broadly connected to a
    patient’s care, even if that information is about another
    Last month, the ruling overturned a ruling from Alberta’s
    Information and Privacy Commissioner, Freedom of Information
    (FOIP) Adjudicator had ruled that Shauna McHarg be allowed
    access to Covenant Health documents which cited why visits to
    her parents were being restricted.
    However, Covenant Health made Application to the court &
    challenged the FOIP Adjudicator’s decision.
    Both McHarg parents are patients at Edmonton’s faith based Catholic,
    Covenant Health, General Hospital Long Term Care facility.
    Last month, a Court of Queens Justice declared the FOIP decision
    as “irrational” and “unreasonable.” and was equally dismissive of
    the Ombudsman’s decision which also had favoured McHarg.
    According to this Court decision, when families are banned from
    visiting loved ones in health care facilities, there is no way
    to challenge those bans.
    It strongly appears that both the FOIP and Ombudsman Office have
    been emasculated by the court decision.
    In 2013, the Ombudsman’s Office cost us, the taxpayer, over 3M
    & the Freedom of Information Office, over 6M.
    For what?

    After running the bureaucratic gauntlet for years, it was expected that Sarah Hoffman would be able to help Shauna McHarg. Where is this help? Who knows?

    Why should we do this sort of political running of the gauntlet? Government has the duty and responsibility to protect handicapped citizens who are at risk in this way. If the NDP folks in government don’t do the job we asked them to do in this matter–then we should fire them in the next provincial election. We should then ask the next politicians we hire for meaningful changes to the system rather than the placebo solutions offered by Alberta Health this time around.

    In the interim, we should be aware of the set up of the death games in Alberta. There are now two types of death games in Alberta. First is the unregulated premature termination death game. Second is the legalized death by doctor game. Perhaps AHS, Covenant Health and Alberta Health need to establish the rules of the premature termination game for citizens— as they have done for the legalized death by doctor business. It is only fair we know the rigged set up before we play this game. Or are we to be innocent and therefore at the mercy of this broken system?

    The failure to establish the rules of the premature termination games put families at a disadvantage in all negotiations with the system. Why are severely handicapped patients put on death row for years and why do families have to struggle for their lives? It’s a question that has yet to be answered by Sarah Hoffman and the NDP folks we hired to government to change this broken system.

    Change has not happened. It is more of the same. Now we have the added challenge of legal death by doctor to consider. If premature termination was this easy before the legalized death by doctor came into practice, what will be the situation in Canada now? I would say that our handicapped family members are more at risk than previously. I would say that we’d better be on site and monitoring them closely as our family is doing. I would say that we’d better be prepared to go public and keep the issue right before the public that is mostly unaware, indifferent and apathetic to the problems and vulnerabilities of handicapped citizens. This is the reason why your organization is essential. Without a national body to promote life and not premature termination and death we would have no help at all as families. What we have in Alberta, Canada is a broken system and a continual fight to save the lives of our handicapped family members.

  3. As an individual in extreme pain, many times now you cant get the medical care you need. In Seattle, WA. if on Medicaid, forget getting any treatment for your pain. It was suggested a few weeks back during an ER visit that assisted suicide is legal here and I should explore my other options. This person had pain and in today’s society, the poor struggle to get care in many places can be impossible.
    Then, the author suggests suicide prevention therapy was available. I have yet to find suicide prevention in Washington even after my last suicide attempt last summer. Therapy yes but a qualified therapist that understands pain and depression. I have found may whom doubt your pain and tell you its all in your mind.

    My thought are with this teens family but if the challenges are to dealt with problems in the system like qualified suicide prevention therapist, access to pain management, etc…then more youth and adults will still seek assisted suicide like they do here in Washington.

  4. This is so sad. Why is it called love when ending a life that didn’t need to die. I feel the only reason this was allowed is because she was different. She should have had counselling and encouragement to keep going. Why is it alright to throw away a life when all she needed was understanding that its okay to be different in this world. People who are challenged should be encouraged to feel enabled not to be disabled by those who are ignorant!

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