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Caring for Fort Worth baby on life support is 'emotionally difficult,' her nurse says

Fort Worth Star-Telegram logoFort Worth Star-Telegram 3/1/2020 By Kaley Johnson, Fort Worth Star-Telegram

Some nurses cannot take care of Tinslee Lewis.

The 1-year-old, who has been in Cook Children’s ICU nearly her entire life, requires constant care. She was born prematurely with a rare heart defect called an Ebstein anomaly, suffers from a chronic lung disease and has severe chronic pulmonary hypertension.

Even a diaper change or crying too much can cause Tinslee’s oxygen levels to crash, requiring several nurses to disconnect her from the ventilator and manually inflate her lungs.

At a court hearing in December about the future of Tinslee’s care, pediatric nurse Kara Lane testified that taking care of Tinslee is “emotionally difficult” for her and many other nurses. Some of them feel they are causing needless suffering for a terminally ill child, Lane said.

Tinslee’s family is fighting the hospital’s efforts to remove the baby from life support. Doctors say she is not going to get better, but her mother, Trinity Lewis, said she wants her daughter to have a chance to live. Trinity said she is with her daughter often and does not think that she is suffering.

“I know that everybody has to pass away, but my fear is them pulling the plug on her with me not being able to make the decision first,” she said at a press conference in January.

Tinslee’s family is appealing a judge’s decision that would allow Cook Children’s Medical Center to take the baby off life support. On Feb. 4, an appeals court in the Texas Second District Court of Appeals in Fort Worth heard arguments from both sides. The judges have not released their decision on the appeal.

Moral distress

While Lane regularly cares for critically sick children in the ICU, she testified that providing care for Tinslee is different because nurses believe they are causing more harm than good for the baby.

At December’s hearing, Tinslee’s doctor, Jay Duncan, said Tinslee’s various conditions are incurable and will eventually kill her. He said her current treatment is prolonging her suffering.

Nurses are told ahead of time if they are assigned to take care of Tinslee so they can request a different assignment, Lane said at the hearing. Some nurses choose to switch because they are not “able to emotionally provide support for Tinslee.”

“There are many nurses that are uncomfortable in inflicting that kind of pain on her,” she said.

Lane and her fellow nurses may be experiencing a common phenomenon among physicians called moral distress. This can happen when a person feels they know what the morally right thing to do is, but they are unable to act on it, said Alex Wolf, a palliative care nurse practitioner in Cincinnati.

Wolf studied how nurses respond when they cannot provide what they believe is the best care for a patient. Specifically, he asked if nurses feel they are able to provide palliative care to patients.

Palliative treatment encompasses care that improves quality of life for patients who have a serious illness. Unlike other treatments, palliative care can include providing spiritual and emotional care for a patient and usually involves specialists who focus on a patient’s comfort.

Wolf found that when nurses are not able to provide that high quality of care, their moral distress levels are higher. Not being able to limit a patient’s suffering may make nurses feel powerless, Wolf said.

In Tinslee’s case, some nurses like Lane feel they are not providing the best care for Tinslee because, as Lane said, “we know that the interventions we’re providing are causing continued pain and suffering for Tinslee.”

Nurses might feel moral distress because of any number of situations in hospitals, not just in cases like Tinslee’s, Wolf said.

Jennifer Hayes, who works in pastoral care at Cook Children’s and serves as the chaplain of the Pediatric ICU, said she sees that emotional struggle among hospital workers often.

“Our goal is always to help children heal and grow. When that doesn’t happen, it really does take an emotional toll on the staff. They can question why they chose this profession,” Hayes said.

When asked for a statement, the Lewis family sent the following in an email:

“Hannah and advocates at Protect Texas Fragile Kids has been assisting trying to locate and get referrals for Palliative Care for Tinslee since last year. Cook has not been cooperative with assisting with Palliative Care. Although a nurse testified at court and it’s been stated by Cooks spokes person that nurses refuse to care for Tinslee, this is not something we have witnessed or been told. The first time we heard this was in court in December. We were shocked when we heard this. Cook has released several statements that are not true.”

Emotional burnout

Those feelings can lead to symptoms of burnout, which between 35 percent and 54 percent of U.S. nurses and physicians feel nationwide, according to an October 2019 study from the National Academy of Medicine.

Working with patients can be discouraging and heartbreaking, Hayes said. But Cook Children’s offers many ways for nurses and physicians to combat those feelings, she said.

“We are able to come back and offer those supportive tools and services and remind them why they chose this job,” Hayes said.

Cook Children’s offers free counseling, support groups and debriefing sessions for faculty. In debriefings, every person who came in contact with a child — from the first responders to the nurses — share the child’s journey through the hospital. Seeing the whole picture can help faculty realize they did everything they could for a patient.

Wolf said hospitals have to offer the kind of services that Cook’s does to show medical professionals they are supported. He also said the medical field as a whole needs more training on palliative care so nurses know they are providing the absolute best care possible.


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