Access to palliative care needs to stay in new health bill
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One morning, not too long ago, I was called to assist with a six week-old baby who had just been admitted to the hospital. The baby had been diagnosed shortly after birth with a rapidly progressive metabolic disorder leading to progressively weakening muscles. She was being admitted now because, too weak to breathe on her own, she required a special pressurized face mask to force each breath into her lungs.  

My pediatric palliative care team and I took the parents to a quiet room to talk, and we began with our usual gentle exploration, starting not with the obvious medical issues but rather with open-ended questions about what their daughter was like as a person.

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The father quickly interrupted us. “Let me save you the energy,” he said. “This is not our first time going through this.”  His older child, now seven years old, had same condition. She was alive, but dependent on a tracheostomy and ventilator to breathe, and spent her days in her wheelchair or in bed.  

 

“She is too weak to walk, too weak to write, and too weak to feed herself, the father told us. Lately she has gotten so bad that she can’t even speak clearly to express herself. She is everything to us. But,” he said, after a pause, “we worry that inside her head she is angry with us, angry about the decisions we made for her when she was just a baby.  And we don’t want to commit our new child to that same pathway.” 

He and his wife told us that they did not want to consider the same measures taken with his seven year-old.   They only wanted us to provide her comfort “while her disease runs its course.” Which, as was clear to all involved, would mean providing excellent symptom management while accepting that without the introduction of  life-prolonging therapies her underlying condition would likely soon lead to her death. 

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We continued the discussion over the next few days. The respiratory support was removed when it was clear that this was the pathway they preferred. The baby lived for several more days, was provided medication for any signs of distress, and was able to spend most of her time in her parents’ arms before quietly passing away one morning.  

 

After the baby’s death, we helped enroll their older child in home hospice — where she is still receiving disease-directed therapies.

There is a famous rabbinic story about Rabbi Hillel, from the first century BCE, in which he is asked to teach the whole Torah while standing on one leg. “That which is hateful to you do not do to another. That is the whole Torah. The rest is commentary.”

For me, this story of the two siblings, though not quite as pithy, is pediatric palliative care. The rest is all commentary.   

We, their expert , explored goals of care. We supported them through a decision not to introduce technology for one child and subsequently through her death. We supported the other child through the intensive use of technologies and medications, and simultaneously introduced hospice benefits to maximize support for them at home.  

We explored goals of care not in order to persuade the family of anything, not to enforce an agenda, but simply to listen and to explore together with them which pathways might make the most sense and be most consistent with their particular goals and values. Two very different pathways, both lovingly arrived at within the same family unit.   

With all of the current uncertainty in the U.S. surrounding the direction U.S. healthcare reform is taking, it is important to be aware that the central elements that allowed this family’s story to unfold in the way it did are at risk of disappearing, and that new initiatives coming before Congress that could augment these elements appear to have have little hope of success in the current environment. \

The concurrent care clause of the Affordable Care Act (ACA) allows children on Medicaid to access hospice benefits at the same time that they are receiving disease-directed therapy. It is because of that crucial clause that this family is already able to receive the support of hospice at this point in time, rather than having to wait until very late in the disease course or be forced to choose now between hospice and continuing to see their primary specialists. If the ACA is repealed without a mechanism to preserve concurrent care for children, this sort of scenario could never happen.  

Of equal importance, some legislators have even resisted national efforts at improving access to palliative care services (for adults and children alike), holding up bills like the Palliative Care and Hospice Education and Training Act. This act would increase funding to palliative care research and training, and would vastly improve both awareness of and access to high quality palliative care for Americans of all ages, regardless of age or prognosis. Senator Ted CruzTed CruzCruz offers bill to weaken labor board's power Overnight Finance: GOP offers measure to repeal arbitration rule | Feds fine Exxon M for Russian sanctions violations | Senate panel sticks with 2017 funding levels for budget | Trump tax nominee advances | Trump unveils first reg agenda The Hill's 12:30 Report MORE stated several months ago in a CNN debate that in Europe patients are referred to palliative care teams where they are “essentially doped up with some drugs, and [told], ‘well, now is your time to go." Some have continued to denigrate palliative care providers, using misleading labels such as “death panels."

Nothing could be further from the truth; with an ever-growing population with potentially life-limiting illness and facing increasingly complex decisions around healthcare choices, preserving laws that protect parental choices and expanding legislation such as PCHETA are more important now than ever.

Palliative care is about how to help individuals and families facing serious and life-limiting illness, families like the one I encountered on that recent morning, make meaningful choices. It is about helping them to live the best life possible in a way that is consistent with family goals and values, regardless of what choices are made. Preserving access to hospice and palliative care services through the concurrent care clause of the ACA and through supporting new legislation like PCHETA, protecting access to choices, is a central part of maintaining this very basic, essential right of families to provide the best care possible for their loved ones.  

Elisha Waldman, MD, FAAHPM, is the medical director of the pediatric palliative care service at the Morgan Stanley Children's Hospital at Columbia University Medical Center, and the author of the forthcoming book "This Narrow Space: A Pediatric Oncologist, His Jewish, Muslim, and Christian Patients, and a Hospital in Jerusalem." He is a Public Voices fellow with the OpEd Project.


The views expressed by contributors are their own and are not the views of The Hill.