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Concurrent care for seriously ill children in the US under threat

20 February 2017

A recent newspaper article by Barbara Jones calls out Senator Ted Cruz for his lack of insight into what palliative care services actually entail and calls on lawmakers to keep the Concurrent Care for Children Requirement of the Affordable Care Act.

Writing for the Corpus Christi Caller Times, Barbara Jones, a professor and associate dean for health affairs in the School of Social Work at the University of Texas calls on lawmakers in the United States to keep in mind how the present Affordable Care Act (ACA) includes a number of important life-saving measures, particularly for the most vulnerable of populations, such as children with life-limiting illnesses.

In the article, entitled, Palliative Care is Vital for Improved Quality of Life, she describes Ted Cruz's description of people receiving palliative care in a recent CNN debate on health care as being 'absurdly misrepresentative of the goals of palliative care'. In the debate, Cruz described people receiving palliative care services as being "essentially doped up with some drugs" and told "well, now is your time to go." 

According to Jones, these comments are indicative of a basic ignorance of medical ethics and evidence-based outcomes within palliative care. She reminds readers that pallaitive care helps patients live as well as possible for as long as possible and has been proven to not only improve quality of life but in some instances to also extend length of life. She also repudiates his insistence that unfettered access to expensive medical interventions leads to better health care, saying that doctors who provide palliative care understand that "just because we can do everything does not mean that we should do everything." 

The value of concurrent care
As an example of the value of palliative care being provided concurrently with curative care, she describes the experience of a 3-year-old from Austin diagnosed with atypical teratoid rhabdoid tumour of the brain, a rare cancer difficult to treat who, along with her family, presently receives the "additional layer of support" that palliative care provides while still going through chemo, radiation and surgery. 

She writes that "the Concurrent Care for Children Requirement of the Affordable Care Act makes palliative care and hospice services more accessible to children who wish to continue receiving potentially life-sustaining treatment for their underlying illnesses." 

Jones asks lawmakers to fight to keep the Concurrent Care for Children provision of the ACA so that providers can continue to offer children and families the best possible options for increased quality of life. 

Click here to read the full article. 

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