Palliative Care Skills for Pediatric Neurology

Palliative Care Skills

Pediatric palliative care is specialized medical care for children living with serious illnesses and addresses not only physical symptoms but also relief from psychosocial and spiritual distress. The goal of palliative care is to improve quality of life for the child as well as for their family. Palliative care is appropriate at any stage of illness and can be provided alongside treatment intended to cure.

Primary palliative care refers to a basic approach to communication and symptom management that clinicians who are not palliative care specialists can use to support their patients. Given the increased symptom burden and incurable nature of many neurologic conditions, child neurologists should be prepared to act as primary palliative care providers when necessary. Child neurologists need to be comfortable navigating conversations that include disclosing serious diagnoses, discussing prognosis and goals of care and assisting families with medical decision-making. In other serious medical conditions, providing palliative care is associated with increased quality of life, decreased rates of depression, increased overall survival, and decreased healthcare-related costs.^1,2

This article aims to provide child neurologists with a basic toolset to navigate these conversations, as well as a clinical manometer to help gauge when to consult a specialty palliative care service.

Communication Skills

Communicating with patients and families is for information gathering, information giving, and relationship building. Throughout conversations there are opportunities to respond to cues or clues about families’ concerns with active listening and empathy. For example, rather than voice a specific concern, families may state, “We’re trying everything, and it hasn’t worked.” These indirect cues are often missed by healthcare providers.

Empathic continuers (Table 1) are potential responses to these indirect cues with statements that address the patient or family’s emotions, validate their feelings, and set the stage for additional conversations. Empathic continuers strengthen the relationship between patient, family, and clinician and create space for patients and families to share information they otherwise may not have chosen to share. Use of empathic continuers helps clinicians better understand the patient and family’s experience; allows them to address emotional, spiritual, and physical concerns; and ultimately leads to decreased anxiety and depression, as well as greater adherence to therapy.³

Delivering Serious News

When sharing serious medical information with families, the Ask-Tell-Ask cognitive road map (Table 2) is helpful to gauge a family’s baseline knowledge, disclose information in a clear and concise manner, and reassess for understanding. Clinicians should resist the temptation to fill any silence or pauses with excessive medical details and jargon, and instead respond to a family’s emotions with empathic continuers (Table 1).

Managing With Hope and Worry

Over the course of a life-limiting disease, such as neuro-degenerative or neuro-oncologic disorders, patients and families may swing between expressions of hope and realism. As in this case, these experiences may be further complicated by the patient’s fluctuating clinical status. Parents may wish to enroll their child in clinical trials, hoping for discovery of a novel, curative treatment, while simultaneously wanting to bring their child home and avoid additional hospitalizations. Adolescents may express a desire to be healthy once again and to grow up to achieve certain goals, but they may also acknowledge their fears of what will happen to their family when they are gone.

Although it may be difficult to balance these seemingly contradictory emotions, emphasizing only one or the other aspect can be detrimental to the patient and family. Sole focus on hope can deprive patients of conversations about fear and pain, whereas a focus only on realism can cause patients to feel abandoned in their hope. Acknowledging this duality can be helpful in identifying and naming emotions.^4,5

Statements that include both hope and worry can be an impactful way of acknowledging and holding space for hope, while still introducing potentially worrisome scenarios. Avoid the temptation to use the word “but” to connect hope and worry statements because it may unintentionally move the focus to what comes after the “but” and negate what is before. For example, one might say, “I too hope her breathing improves and we can safely get her off the respirator. I worry her muscles are too weak to support breathing on their own.”

Requesting a Palliative Care Consult

Although child neurologists should have the practical skills to break bad news and respond to complex emotions, they should also know when to consult specialty palliative care teams for chronic and serious illnesses. Specialty palliative care can provide expertise in navigating complex medical decision making and can help simplify communication when there are multiple medical teams. Palliative care specialists can aid in decisions regarding life-prolonging treatments and withdrawal of care. Specialty palliative care can also provide valuable input in symptoms including managing secretions, pain relief, and balancing air hunger and respiratory depression.

Addressing “Care for Rare”

Providing care to a child with a rare disease may be overwhelming to clinicians, who may feel uncertain of whether they exhausted therapeutic options when encountering a disease they have not treated before. It is especially complicated when there are no established standards of care or targeted therapies available. Contacting providers at different institutions who may have specialized in or researched this disease may be helpful in supporting the physician while deciding if enrollment in clinical trials would impact prognosis.

External connections can benefit the family members as well. Joining a support group can help parents and family members feel less isolated in their child’s treatment journey. It allows them to gain coping strategies, share experiences, and find comfort with people who have uncommon yet shared experiences. After the loss of a loved one, parents also may feel comfort in knowing that their loss may help others. When appropriate, discussion of potential ongoing research trials may help loved ones find meaning in their loss.

Conclusion

Considering the nature of neurologic disease, child neurologists are challenged to support an entire family through a complex disease process with unique pediatric-specific considerations (Table 3). Child neurologists must feel equipped to disclose difficult information empathetically and respond holistically to complex emotions. These skills improve communication and provide high-quality care for children with serious and potentially life-limiting conditions. It is our hope that child neurologists can use the tools discussed to navigate these conversations and experiences. Child neurologists should also be comfortable consulting specialty palliative care to help assess goals of care, complex medical decision making, and symptom burden in any child with a serious neurologic condition where prognostic awareness and medical decision making complicates care. These discussions should occur and continue at all stages of the child’s condition beginning at diagnosis.