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.

The increasingly technological sophistication of diagnostic and treatment procedures and the sensitive nature of end-of-life communication challenges the assurance that the family’s understanding is adequate to meet the minimum requirements of informed consent. This challenge is increased when families have limited proficiency in English. U.S. federal antidiscrimination laws require that healthcare facilities receiving federal funds provide professional interpreter services for families with limited English proficiency, but the mandate is seldom enforced. The cultural barriers extend beyond language. For example, many Latino families view the physician as a figure of authority and consider it impolite to question, correct, or disagree. Some promising innovations include states that have adopted Medicaid codes that include compensation for medical translation and health organizations that have diversity centers which employ cultural navigators for families.⁸

Forgoing the Search for the Dying Point

The majority of medical providers view home-based palliative care and hospice as a changed dimension of care instituted once it is agreed that death is the likely outcome for the patient.⁹ Conflict from many sources occurs when the provision of palliative care or hospice is viewed as a new approach to care distinct from aggressive medical management. Because providers view palliative care as a distinctly different model of care, they are tempted to search for the point along the illness trajectory when they are sure death is inevitable, the dying point, and then transition to palliative care or hospice. This approach is not helpful because there is rarely agreement about the timing of the dying point.⁶ Empirical attempts to predict which children will need palliative care when it is tied to the timing of death have been unproductive.^10,11

Home-based palliative care and hospice should be considered in terms of the patient’s and family’s needs rather than as a wholesale change in approach that occurs at a single point along the disease trajectory. To search for the dying point only delays the provision of services and leads to missed opportunities for better managed care at the end of life. When palliative care and hospice are conceptualized as models of care that seek to prevent, relieve, reduce, or soothe the symptoms produced by serious medical conditions to maintain the quality of life for seriously ill children and their families, they can be integrated with curative or life-prolonging care. This model may begin at diagnosis in many cases where the disease is known to be potentially life limiting and be continued throughout the disease trajectory regardless of the outcome.

Adopting such a model of palliative care and hospice as timely and coincident treatment requires a shift in the attitudes of many of the acute care services. New educational programs are helping to promote this model of palliative care. Recently some programs have reported success with prospective agreements on referral criteria that automatically trigger referrals to palliative care and hospice. By doing so, these agreements obviate the search for the dying point and ensure that, at a minimum, the hospice and palliative care services have the chance to assess families’ needs in a timely manner.¹² More progress will likely come by sharing the emerging evidence about the benefits of palliative care and hospice as early intervention with acute care providers. Eventually these interventions may help to create an environment where the introduction of home-based palliative care and hospice is less abrupt, more readily accepted by families and associated with better quality of life outcomes at the end of life.¹²

Avoiding Abandonment

Perhaps the area where adult and pediatric care differ the most is the transition process. Adults with severe life-limiting illnesses are frequently transferred to a new caregiver team for home-based hospice, with progressively limited contact from the acute service. A 2000 study suggests that adults tolerate this transfer from one team to another fairly well.¹³ The nature of pediatrics, the special place that the ill child occupies in the clinical milieu, and the needs of young families make the traditional model of transfer ineffective for children.

Although continuity of care has been a focus on neonatal and pediatric units for more than a decade, it is easy to see how this critical attribute is degraded when an acute care team terminates their relationship with the family and the home based palliative care team or hospice assumes a management role. Patients and their families form strong, healthy relationships with their acute providers. Nurses particularly form very strong attachments to their patients and have intimate knowledge of families’ needs and strengths.⁹ An abrupt transfer to a new team, regardless of the skills of its members and the best intentions of all those involved, has a profound and usually negative impact on the continuity of care that the child and the family need.¹⁴ At its worst, the transition takes on the quality of abandonment.

A model of home-based palliative care and hospice that integrates curative care would most effectively be implemented by the acute team. It is most successful when both teams work cooperatively to introduce the transition and continue to stay in contact through the duration of the child’s illness up to, and including, death.

One example of introducing home-based palliative care includes tasks that are shared by the acute and the palliative care teams. The earlier in the trajectory of illness that the discussion occurs, the more likely it is to be helpful to the patient, the family, and to all care providers. Although the acute and the palliative care teams may take turns taking the lead on different aspects of the conversation, it is imperative that the discussions occur with both teams with the family at the same time. The advantages of this approach are many; it reduces the risk of miscommunication and misunderstanding of the goals of care, but most importantly it demonstrates the partnership in continuity of care that both teams are committed to provide.

The acute team is best equipped to provide the most accurate understanding of the diagnosis and prognosis. With the palliative care team present, the acute team can introduce the patient and family to members of the home-based team. Then it is best to review the patient’s medical status. This should include a sensitive recounting of the testing and treatments provided thus far, and include unambiguous explanations of the negative outcomes. For medically fragile children with complex care needs or children with degenerative disorders whose course is somewhat predictable, this description may occur quite early in the trajectory of illness and contain a review of what is known about the natural history of the disease. For children who have life-threatening illnesses, the discussion should begin as soon as possible. An example might be, “We had hoped that the pathology report would suggest a benign tumor, but unfortunately this is a malignant tumor that is presenting in a very aggressive way. We will do everything we can to treat this successfully and restore your child to health but we may come to the place where we cannot cure this disease.” This can be followed by a discussion of the family’s questions and concerns. Within this discussion it is important to be realistic about treatment options and to provide accurate information free from speculation about options that are truly not available, For example, statements such as “if this were a less-aggressive cancer we would be considering x or y treatment” creates needless ambiguity in the minds of patients and families and may undermine the goals of care.

This honest accumulation of negative medical evidence must be balanced with a holistic approach to continued care, with assurances that the child’s needs will still be aggressively assessed and treated. It also must be communicated that the team will continue to work toward the highest degree of comfort and quality of life possible throughout the child’s illness and even at the end of life. Both teams can then move ahead with the discussion by assessing the patient’s and family’s understanding of the prognosis. This part of the discussion is often the most sensitive and should be led by the family with open, cooperative responses from both teams. The next step is to encourage the family to articulate their goals of care. Both teams may then assist the family in reviewing their goals, and in the cases where it is necessary, reframing their goals. The palliative care team may then lead with a discussion of the family’s needs and proceed with dialogue that links the needs to the goals of care. When the link between needs and goals is established, at least temporarily, the home-based team can then proceed with more detailed descriptions of the services available and the methods by which they can be accessed by the patient and the family. The most appropriate conclusion to this introductory discussion is a clear reinforcement of the commitment from both the acute care team and the home-based team to continue to work together to provide the highest level of care for the patient and the family.

The approach described above may be a best case scenario and may not be possible in every patient setting. However, if the best intentions, honoring the family’s perspective, maintaining honest communication, and creating an atmosphere of genuine cooperation are honored then the risk of abandonment will be reduced.

Maintaining Hope

Hope is not a singular entity that can be created or destroyed by circumstances or conversations. It is an essential component of the human spirit and a way of living in the world. Truthful disclosure about life-limiting pediatric disease, even when the prognosis is poor or uncertain, does not have the power to diminish hope.¹⁵ Truth telling and compassionate listening build rapport that enables hope to flourish, regardless of the circumstances. Realistic perceptions of prognosis, sensitively communicated, have the potential to transform hope into meaningful goals for children and their families, even at the end of life. An experienced clinician might explain that there are no more curative options by first reviewing all the treatment that has taken place thus far and then following with a statement such as: “If we could find another treatment that would cure this disease, we would offer it to your child, but we have tried everything and have exhausted all of our options. At this point a cure would be a miracle. We want you to know that we will continue to care for your child, and work to meet her needs, regardless of the outcome. And as we do, we will join you in hoping for a miracle.”

Compassionate relationships are the vehicles that impart hope, regardless of the trajectory of illness.¹⁵ Eliciting and establishing goals of care is essential throughout the course of treatment and has the ability to promote and transform hope. Evaluating where the family may be on the continuum of hope at any moment is a necessary starting point for conversations that build relationships. These conversations should include the sharing of specific recommendations that invite further conversation, the introduction of the possibility of death when appropriate, and the elicitation of goals of care as they continue to change. Continuity of care is central in the promotion of hope. Families and providers both benefit from maintaining the relationship with their acute care providers, even after the majority of the curative treatment has concluded.

Families value honest and complete information. The relationships that foster their hope require ready access to trusted staff. Relieving some of the burdens of care with the provision of care coordination can provide relief that allows families the emotional space to grow in hope. Hope can be supported by appropriate and honest emotional expression on the part of staff members. Parents’ hopes are supported by continuing efforts that maintain the integrity of the parent-child relationship. Religious faith can be very meaningful to families as they approach their child’s life-limiting illness. Creating a culture of acceptance and integration of spiritual belief may be crucial for some families in the promotion of hope throughout the course of the illness.¹⁶

Families’ beliefs and experiences inform their hopes. It can sometimes be helpful to families if clinicians help them to locate their hope when it appears to be elusive. An example of this might include asking the family what they hope for. When the answer they provide is “We are hoping for a cure,” then a helpful response might be “I am hoping for a cure, too. And I hope we get one, but if we are not able to have a complete remission, what else do you hope for?” Frequently families will respond with a more proximate hope, such as “I hope she will live until Thanksgiving.” By locating the nature of their deepest hopes, families can direct the goals of care in a constructive direction. The child’s care can proceed with realistic hopes without sacrificing hope at a higher level.^17,18

Hope can extend into bereavement by affirming a lifelong bond with the child that continues after death. Bereaved parents strive to find ways of sustaining that lifelong bond.¹⁹ Hope can continue by sustaining belief in the possibility of making meaning out of their child’s death. Home-based programs that include bereavement, sibling programs, and ongoing support groups can assist families as they search for meaning in their child’s death and grow in the relationship with their child after death.²⁰ Families hope to sustain life and the physical and emotional union of relationship throughout their child’s illness. That same hope can continue into bereavement as parents nurture and create lifelong bonds with their deceased children.