Pediatric palliative care and hospice

Pediatric palliative care vs. hospice care

Kelley and Morrison defined palliative care as the interdisciplinary specialty focused on improving quality of life for persons with serious illness and their families ( ). The American Academy of Pediatrics Committee on Hospice and Palliative Medicine and the Committee on Hospital Care expanded on that definition, stating that the goal of pediatric palliative care is to “relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care” ( ). Pediatric palliative care embraces the pediatric age spectrum, helping patients and families from the prenatal period through young adulthood. A child’s life-threatening illness may represent a sudden and serious event in a previously healthy child, the birth of an infant with congenital anomalies at high risk for early mortality, a declining trajectory in chronic illness in a child with a complex medical history, or a preterminal condition. One key aspect influencing the field of pediatric palliative care is that advancements in pediatric medicine have resulted in increased survival of the most fragile children, resulting in disease trajectories that are “characterized by slow deterioration and high dependency and debility” ( ). Pediatric specialists have become skilled at delaying death but at the cost of creating a significant burden of care and technology in patients’ homes. Regardless of the acuity or age of the patient, families are anxious and suffer from these burdens and uncertainties of illness and debility. Every new problem and each hospitalization may feel like additional losses for many families.

Hospice care is distinct from palliative care. Although both specialties provide medical and psychosocial services to patients and families at a time of medical crisis and uncertainty, hospice care is linked to an expectation of death (or the high likelihood of death) within 6 months as the primary condition progresses. Palliative care is different in that the discipline offers benefits to patients and families independent of prognosis. In adult medicine, strict Medicare regulations require that hospice patients relinquish access to disease-altering treatments; however, provisions in the Affordable Care Act of 2010 permit children receiving Medicaid services, up to the age of 21 years, to receive hospice services concurrently with standard care ( ). In the author’s experience, most commercial insurers also cover concurrent care, because in many instances, the availability of skilled care at home prevents costly emergency department visits and hospitalizations. The concurrent care provision is advantageous for families, in that they may continue to visit trusted caregivers as long as they choose, while giving the hospice team a chance to build relationships prior to the inevitable decline. Over time, in this model, most children spend more time at home than in clinic or in the hospital, as services are available to them in the home setting. One common example of concurrent care would be the oncology patient enrolled in home hospice care who is no longer a candidate for chemotherapy but who still requires frequent platelet and red cell transfusions to prevent bleeding and to maintain energy levels. The concurrent care model offers huge benefits for patients and families but also carries significant challenges in communication and coordination of care among providers.

Summarizing the distinction between palliative care and hospice succinctly, Gustin and Aslakson wrote: “Palliative care is based on patient and family need, whereas hospice care is based on patient prognosis” ( ).

The purpose of palliative care teams

The range of pediatric palliative care interventions is broad and includes some or all of the following: discussing patient and family goals of care; facilitating critical decision making regarding treatment options; managing distressing symptoms, including pain, nausea, vomiting, delirium, and anxiety; providing psychosocial and spiritual support; participating in the communication of bad news; discussing end-of-life decisions, including resuscitation status; assisting with coordination of care among specialists; assisting with coordination of discharge plans or hospice transfer; and assuring that patients/families are fully informed about the likely trajectory of the illness ( Table 26.1 ). Palliative care interventions are provided by an interdisciplinary team that includes physicians, nurses or nurse practitioners, chaplains, social workers, pharmacists, and bereavement counselors in addition to administrative support staff. Most teams also include or have close relationships with specific child life specialists, psychologists, physical and occupational therapists, art and music therapists, animal therapy, and volunteer support.

Once the primary team consults the palliative care team, the physician and/or advanced practice nurse reviews the medical history, assesses the symptom burden, and makes recommendations to enhance comfort, at the same time that other members of the team seek information about the child’s and family’s coping from the bedside nurses and ancillary staff. The palliative care social worker assesses the family structure and stressors in addition to resource needs and may provide counseling services for the patient, parents, or siblings. The chaplain explores the family’s spirituality and religious faith, helps the child process his or her physical changes and losses as anticipatory grief, assists in the difficult work of “redefining hope,” and helps support the family’s underlying belief system, thereby improving the team’s understanding of the family’s goals of care ( ). A pediatric psychologist may be very helpful in the assessment and management of pathologic behavioral and emotional responses to illness, incorporating cognitive behavioral therapy and introducing techniques such as guided imagery and relaxation ( ). And finally, the palliative care bereavement specialist follows the families of children who have died under the team’s care, identifies parents and siblings at high risk for complicated grief, and makes community referrals when indicated. Most pediatric palliative care is provided in the inpatient setting, although many larger programs partner with the patients’ specialists to offer continuity of care for their patients in the community or clinic setting ( ).

Another area in which the palliative care team may be helpful is in caring for staff members—trainees, physicians, nurses, and ancillary caregivers—for whom the child’s illness and/or death may induce significant psychological, moral, or emotional distress ( ). Other stressors for bedside caregivers may include contentious interactions with the family, conflicts among team members or consultants, disagreements with the family about the patient’s degree of suffering, or burnout or compassion fatigue. The palliative care team meets with staff members, brainstorms communication strategies that might be helpful in dealing with families in distress, offers emotional support, and encourages healthy self-care.

Pediatric palliative care vs. the pediatric pain service

These two teams have different and overlapping approaches to offer patients such that their collegial collaboration can positively impact patients. Obviously, the increased use of regional anesthesia in pediatrics has positively affected children undergoing major surgery, as has the incorporation of multimodal analgesia as standard practice for postoperative pain. In some patients, however, the combination of pain, anxiety, depression, and fear, along with the interactions of polypharmacy, may suggest the need for the multidisciplinary approach offered by palliative care. Similarly, if the palliative care team struggles to manage pain with standard measures, the involvement of the pain team might be helpful for regional or interventional pain management.

The timing of palliative care consults

The American Academy of Pediatrics has recommended that the palliative care team be consulted at the time of, or shortly after, the diagnosis of a significant illness ( ). Even for conditions for which there are now highly effective treatments, like acute lymphocytic leukemia, families benefit from the supportive care offered throughout the treatment journey. Other appropriate times to consult or reconsult the team would be when the child’s typical illness pattern seems to be changing: more frequent hospital admissions, the requirement for multiple new medications, obvious deterioration, evidence of cancer recurrence, new symptom burdens, longer hospitalizations, or difficulty weaning from the ventilator. Any point along the child’s illness trajectory at which there seems to be a “fork in the road” in terms of possible therapeutic options offers a good opportunity to review the child’s status relative to parental goals. One common example of such an inflection point might be when the medical team is considering tracheostomy for a child with profound neurologic impairment after one or more failed extubations. Perhaps the medical team is conflicted about whether to offer the tracheostomy. Perhaps they are unsure whether parents would want, or be able to take on, the added burden of tracheostomy care at home. A frank discussion of the risks, benefits, limitations, lifestyle changes, and alternatives to tracheostomy—presented in light of the parents’ goals and hopes for their child—would help all concerned and balance the medical choices going forward. Parents, too, frequently offer hints that they are ready to discuss goals of care when they make remarks like “it just doesn’t seem like we’re getting back to where she was,” “nothing seems to be working,” or “she just looks miserable all the time.” One of my colleagues says, only half-joking, “the time to call Palliative Care is 2 months before you thought of it” (Jared Rubenstein, MD, personal communication).

One barrier to incorporating palliative care into the perioperative arena is the scarceness of well-developed palliative care teams outside of major hospitals or academic medical centers. More common is the feeling by some physicians that families will feel that their medical team has “given up” on their child if the physician consults palliative care. This hesitancy generally reflects the physician’s own discomfort with the introduction of palliative care as a benefit to patients and suggests that enhanced efforts to incorporate robust palliative care training into undergraduate medical education might be helpful.