In a recent CNN debate about health care, Texas Sen. Ted Cruz claimed people confronted with life-threatening diseases who receive palliative care services were “essentially doped up with some drugs” and told “well, now is your time to go.”
We find these statements absurdly misrepresentative of the goals of palliative care.
If Cruz has his way, caring for people with life-threatening illness or at the end of life may become much more difficult. Cruz’s comments seem to reflect a basic ignorance of medical ethics and evidence-based outcomes. His insistence that unrestrained access to high-cost medical interventions is somehow equated to “better health care” is simply unsupported with regard to outcomes.
Just because we can do everything does not mean that we should do everything — and in the medically fragile population, these heroic interventions can cause more suffering with no clear long-term benefit.
Palliative care is an interdisciplinary medical specialty focused on supporting patients and families through serious, life-threatening illnesses. Palliative care helps patients live as well as they can for as long as they can. The focus is not on death, but on life. In fact, a study in 2010 found that early palliative care not only improved quality of life but also extended length of life.
Palliative care teams work with children with complex medical needs and their families. They focus on reducing pain and other uncomfortable symptoms, understanding the family’s goals for their child, facilitating conversations between the family and the medical team, and supporting the family’s social and spiritual needs.
The palliative care population is incredibly fragile and vulnerable — and it requires a holistic model of care that focuses not just on illness but on the entire family.
For example, Corinne Weildler, a beautiful 3-year-old from Austin, is currently receiving palliative care. When she was a year old, she was diagnosed with atypical teratoid rhabdoid tumor of the brain, a rare and fast-growing cancer that is difficult to treat. Soon after, Corinne’s family met with a palliative care team. We all talked through the treatment options and how to best support and maintain Corinne’s quality of life while she went through months of chemo, radiation and surgery.
For her and Corinne’s family, palliative care acts as an additional layer of support — a team to collaborate with about how to manage symptoms, improve communication between all of the child’s doctors, and to sit quietly with during the hardest moments. Despite 13 surgeries and more than 40 rounds of radiation and chemo, Corinne has maintained a good quality of life.
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. Hospice, similar to palliative care, focuses on reducing burdensome symptoms and improving quality of life for patients and their families.
For many years, children had to choose to decline curative treatments to receive beneficial hospice services. Clearly, many families opted to continue chemotherapy or radiation, vital medications, physical and speech therapy, and home nursing support, while losing the chance to engage with their local hospice team. With this provision of the ACA, children are able to continue to receive all treatments associated with their illness while also accessing comprehensive hospice services.
By making irresponsible statements and by working to repeal the ACA, Cruz and many of his colleagues would eliminate this vital benefit that can help tens of thousands of children live better and fuller lives. The fact is the ACA includes a number of important life-saving measures — and lawmakers must keep in mind how this affects the most vulnerable of populations.
Lawmakers should be fighting 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.
And if Cruz and his colleagues continue to put politics ahead of compassion, common sense and children’s health, voters should tell them it’s their “time to go” directly out of office.
Jones is a professor and associate dean for health affairs in the School of Social Work at the University of Texas. Carnahan-Metzger is a pediatric palliative care social worker.