May 30, 2012
Forced Medical Treatment and Denying Parental Rights - Sarah's Last Wish
Forced medical treatment is not a rare occurrence confined to grimy hospitals in totalitarian regimes. Medical ethicists report that it is a common event that happens thousands of times each day in developed countries with sophisticated health care systems. Sarah's Last Wish is a true story of a brave young girl claiming her right to live and die with dignity. Her last wish is already changing the system...
The cold spring morning of March 24, 2011 promised a routine day as Maryanne Godboldo cleared away the breakfast dishes in her modest two story brick and weatherboard home in East Detroit. Unknown to Maryanne, a Wayne County child protection (CPS) worker was lodging a JCO5B form at the county courthouse. She did not agree with the treatment that Maryanne’s 13-year-old daughter Ariana was receiving from her family physician and believed the girl should be medicated instead. The social worker intended to force Ariana from her home later that day and admit her to a nearby psychiatric facility for injections of strong antipsychotic medication.
Over a one month period alone, one US emergency department recorded 314 involuntary treatment orders. According to researchers at University of Louisville School of Medicine, half were psychiatric admissions, while the other 50% were coerced ‘medical or surgical admissions’.
Current thinking in medical ethics defines the gold standard of patients’ rights to medical decision-making as: ‘[mentally] competent individuals are allowed to make their own treatment decisions: incompetent ones are not,’ according to researchers George Annas and Joan Densberger. This definition works well in cases of mental impairment or to authorize doctors to administer life saving medical treatment to depressed individuals who have declined treatment for a physical condition.
Increasingly though, treatments are forced onto persons who are mentally sound and competent to make decisions, but who merely prefer a different treatment option or wish to attend a different hospital than the ones their doctors prefer.
In some cases, coercion is carried out using potentially lethal force, as experienced by the Godboldo family in Michigan. Once the CPS worker had lodged the form, she returned from the courthouse and parked her government car not far from Godboldo’s home. From her cell phone she dialled 911 to ask for police assistance to remove Ariana. When the officer confronted Maryanne at her front door, she asked to see a warrant. Allegedly, when no warrant was produced, Maryanne refused to hand over her daughter and closed her door. The situation rapidly escalated when police summoned backup. Within half an hour the tactical response team had arrived in body armour, with high calibre assault weapons, riot control agents and an armoured vehicle. Why?
The previous year, Maryanne Godboldo had first appeared on the CPS radar after Ariana had experienced a severe physical reaction to a series of vaccinations within hours of the shots. Maryanne returned to the paediatrician later the same day, asking him to investigate Ariana’s sudden fever, irritability and twitching symptoms, but he allegedly refused. Later that day, she took her daughter to a nearby paediatric clinic, where she says doctors also refused to investigate the vaccination side effects and prescribed psychiatric medications instead. Since Ariana had no history of mental or emotional problems, Maryanne began to suspect that her daughter was receiving the wrong medication. This was confirmed when the strong drugs were evidently having a detrimental effect on her daughter. Maryanne then sought a second opinion from another doctor who, she says, restored Ariana’s health by gradually weaning her off the medication over a 6 month period. Despite the dramatic improvement to Ariana’s health, doctors at the clinic disagreed with Ariana’s treating doctor and made a report to CPS, who removed Ariana from her home to force the medication onto her again.
A similar event occurred in Australia during 2003, when an 11-year-old New South Wales girl had been diagnosed with a rare form of cancer after her parents, Mark and Dianne rushed her to no less than three hospitals in a frantic search for medical help. At one hospital the young girl -- who showed no signs of puberty -- was misdiagnosed as being pregnant before doctors at the third hospital correctly diagnosed her tumour and performed surgery to remove it.
The false report of pregnancy with its serious implications had put the parents on the Australian child protection department’s radar after the doctors made a report to the authorities - before they had performed conclusive pregnancy tests, which of course turned out to be negative.
At the same time, the shocking misdiagnosis had shattered the parents’ confidence in the local medical system and while Sarah recovered from surgery, they sought a second medical opinion and began making plans to take their daughter to a specialist cancer hospital in the US for further cancer treatment.
Before the parents could take Sarah to an overseas hospital, a secret court hearing authorised police to use ‘any force necessary’ to apprehend Sarah and administer whatever treatment doctors at the local hospital ‘deemed necessary’. This court order forced Sarah into a 6 month involuntary hospital detention that included forced medication and surgery -- all of which turned out to be tragically unsuccessful.
The forced treatment denied Mark and Dianne their parental rights to choose the best available medical care and in particular to have their daughter’s rare cancer treated by overseas experts. At the same time, Sarah had been denied palliative care until she was released from state wardship, only two weeks before her death. Once placed again into her parents’ custody, they immediately left their home state of NSW and flew with their dying daughter to Melbourne on a commercial aircraft. It was at the Royal Children's Hospital Melbourne - with her family by her side - that Sarah received compassionate end-of-life care until her death two weeks later. The full story is told in the book: Sarah’s Last Wish by Eve Hillary.
A research brief prepared by Rand Health, a think tank for health policy makers, attempts to answer the question: does involuntary medical treatment work? It concludes that even for those who are mentally impaired: ‘There is no evidence that a court order is necessary to achieve compliance and good outcomes, or that a court order, in and of itself, has any independent effect on outcomes...Empirical evidence on effectiveness of involuntary outpatient treatment is slim.’
Given that these statistics pertain to those whose decision making ability is impaired by mental illness, is there any case in which it is necessary and ethical therefore to force medical treatment onto persons with sound and unimpaired judgement? It seems evident that forcing medicine on mentally sound individuals, while denying them the freedom to choose their own health care, has no positive medical value at all and is easily subject to abuse by bureaucrats and political systems.
For the present time, Ariana Godboldo has been allowed to leave the psychiatric facility and return home, while her mother Maryanne anxiously awaits the next court decision. Her wishes are that the judge will reinstate her parental rights, that Ariana will continue to be treated by the trusted family doctor and that she be allowed to resume her previously normal and happy life at home, free from psychiatric medication.
For Sarah, it is too late. She is now in a place without pain or politics. Clearly, what happened to Sarah must never happen again. But her powerful and exemplary life is told in Eve Hillary’s new book, Sarah’s Last Wish, now a best seller. Since its publication, the book has so deeply touched the nation that it has sparked positive reforms in the health care system. While Sarah’s gift to society cost her the ultimate price, it remains forever one with infinitely positive social value: she gives Australians a new moral compass.
Eve Hillary, BHSc. is a best selling Author,
Patient Advocate and Health Professional. To order a copy of Sarah’s Last Wish, go to:
www.sarahs-last-wish.com and click on to Bookstore.