Recognizing the Barriers to Palliative Care

The barriers to the introduction of palliative care and hospice for children are often different than those identified for adult hospice referrals. Fear of addiction to pain medication, fear of hastening death through use of opioids and concerns about legal action are common problems in the recommendation of hospice care for adults, but are rarely encountered in pediatrics. The barriers to referral for children can be roughly divided into two groups: those that are associated with constraints within our national medical culture and those that are related to clinical practice.

Constraints within our medical culture include limited financial resources for specialized pediatric palliative care, limited access in rural regions, lack of research and evidence-based guidelines, and lack of provider training and expertise. These barriers are best addressed at the level of resource allocation, policy, local and governmental advocacy, and curriculum development.⁴ There has been a gratifying, if small, increase in the awareness of these issues in the last decade but clearly the gains accomplished so far have only advanced the frequency of referrals by a small amount.

Historically, palliative care has been confused with a subset of palliative care: hospice. Hospice in the United States traditionally has been reserved for children whose doctors were willing to predict that they had 6 months or less to live and whose families were willing to forgo curative treatment. This confusion over palliative care and hospice often led to an awkward introduction of palliative care to the family late in the child’s illness, preventing children and their families from receiving comfort care at home. The criteria for enrollment into hospice, especially agreeing to forgo curative treatment, have been stumbling blocks that have interfered with the opportunity for children to receive home-based hospice care at the end of their lives. The most encouraging models now include home-based palliative care programs that provide community-based care without the strict eligibility requirement for hospice but also allow patients to transition into hospice when it is appropriate.

The barriers to palliative care and hospice referral that are related to clinical practice are more subtle. In 2008, Davies and colleagues identified 26 barriers to palliative care referral within a large pediatric teaching hospital. The five most frequently cited barriers from the providers’ perspective were uncertainty of prognosis, families not being ready to acknowledge the incurable condition, language barriers, time constraints, and families’ preferences for life-sustaining care.¹

Uncertainty of prognosis is much more common in pediatric patients than in adults. In most pediatric palliative care programs, cancer represents less than half of all diagnostic groups. Children with chronic and complex life-limiting conditions now represent a wide variety of illnesses, including those caused by prematurity, congenital disorders of every organ system, neurodegenerative abnormalities, and malignancies. All of these disorders are relatively rare and often do not lend themselves to accurate predictions about either the response to treatment or the likelihood of survival. This uncertainty can lead to confusion that undermines the goals of care and leads to a “dichotomous cure vs. palliative care” approach.¹ In this framework neither parents nor medical teams are willing to pursue palliative care or hospice until all are sure that no curative option exists. Thus referral occurs inevitably late when the opportunity to plan and arrange for quality care at the end of life may no longer be possible. Uncertainty also has the ability to undermine the medical team’s credibility with families who expect expert medical personnel to be able to predict the natural history of their child’s disease. Uncertainty over prognosis in this situation can erode the family’s trust, it can impede the development of consensus for care, and delay spiritual and psychosocial support, all of which may contribute to increased suffering.

The death of a child is never within the natural order of things and is therefore “always out of season.”⁵ It is not surprising then that the second- and fifth-most common barriers to referral are the families’ lack of readiness to acknowledge an incurable condition and families’ preference for life-sustaining treatment. There is considerable overlap among these barriers. Families are often confronted with unexpected reversals, idiosyncratic responses to therapy and plateaus of relative stability that inspire them to hope for a positive resolution of their child’s disease. Their best hopes for recovery are often supported by the promises of the latest treatment and the newest technology or by the recounting of miraculous recoveries promoted by the media and the hospital’s own marketing department. At times, some members of the clinical care team are unable to stop aggressive medical treatment, even while they are discussing end-of-life options, because they cannot know with absolute certainty that a child will die. This mixed message adds to the family’s uncertainty. The medical team often recognizes a terminal prognosis before families do.⁶ Bridging the gap between the team’s and the family’s understanding of the child’s terminal diagnosis is difficult. If done too abruptly it can create tension between the staff and family; if it is delayed and aggressive curative care is continued beyond the limits of perceived benefit, then both the staff and the family can suffer acute moral distress.⁷ There is growing evidence that the introduction of skilled communicators at this point may facilitate clearer understanding of the prognosis and promote a unified approach to goals of care.