6
End-of-Life Care: Special Issues in Pediatric Oncology

Joanne M.Hilden, M.D.

The Cleveland Clinic Foundation

Cleveland, OH

Bruce P.Himelstein, M.D.

University of Pennsylvania School of Medicine

The Children’s Hospital of Philadelphia

David R.Freyer, D.O.

DeVos Children’s Hospital, Grand Rapids, MI

Sarah Friebert, M.D.

Case Western Reserve University

St. Vincent’s Mercy Children’s Hospital

Hospice of the Western Reserve, Cleveland, Ohio

Javier R.Kane, M.D.

University of Texas Health Science Center

Christus Santa Rosa Children’s Hospital

Christus Santa Rosa Hospice

OVERVIEW: CHALLENGES UNIQUE TO THE PRACTICE OF PEDIATRIC PALLIATIVE CARE

Despite remarkable progress in the treatment of pediatric malignancy, 30 percent of children with cancer still die of their disease or its complications (Pizzo and Poplack, 1997). Cancer is the most common cause of nontraumatic death in children; 2,200 children die each year from cancer in this country (out of a total of 30,000 pediatric deaths annually). Although this is far fewer than the half-million adults who die, the premature death of a child is a unique tragedy.

This report examines the end-of-life care problems unique to pediatrics and suggests steps that could alleviate them. The solutions center on improved models of care and reimbursement structures, which represents the way toward “informed, shared decisionmaking” that can be accomplished only through time-consuming, detailed conferences. In the case of pediat-



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Improving Palliative Care for Cancer 6 End-of-Life Care: Special Issues in Pediatric Oncology Joanne M.Hilden, M.D. The Cleveland Clinic Foundation Cleveland, OH Bruce P.Himelstein, M.D. University of Pennsylvania School of Medicine The Children’s Hospital of Philadelphia David R.Freyer, D.O. DeVos Children’s Hospital, Grand Rapids, MI Sarah Friebert, M.D. Case Western Reserve University St. Vincent’s Mercy Children’s Hospital Hospice of the Western Reserve, Cleveland, Ohio Javier R.Kane, M.D. University of Texas Health Science Center Christus Santa Rosa Children’s Hospital Christus Santa Rosa Hospice OVERVIEW: CHALLENGES UNIQUE TO THE PRACTICE OF PEDIATRIC PALLIATIVE CARE Despite remarkable progress in the treatment of pediatric malignancy, 30 percent of children with cancer still die of their disease or its complications (Pizzo and Poplack, 1997). Cancer is the most common cause of nontraumatic death in children; 2,200 children die each year from cancer in this country (out of a total of 30,000 pediatric deaths annually). Although this is far fewer than the half-million adults who die, the premature death of a child is a unique tragedy. This report examines the end-of-life care problems unique to pediatrics and suggests steps that could alleviate them. The solutions center on improved models of care and reimbursement structures, which represents the way toward “informed, shared decisionmaking” that can be accomplished only through time-consuming, detailed conferences. In the case of pediat-

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Improving Palliative Care for Cancer rics, this is multilayered, involving the health care team, the parents, and the child patient. Models of care and reimbursement structures should value and recognize this. Palliative care for children involves all-inclusive and compassionate care aimed at preventing and relieving suffering for those with life-threatening illness. Pediatric palliative care is family-centered care, with the child and family enwrapped in the center of a circle of professionals addressing spiritual, social, psychological, and physical needs. The prevalence of children living with active palliative care needs at a given time is estimated at 50 per 100,000 (Goldman and Christie, 1993). Available resources designed for the care of adults with life-threatening illness do not fit the needs of dying children. Also, despite recent increases in interest in adult palliative care and hospice philosophy, a parallel increase in pediatrics has not occurred—80 percent of children dying with cancer in this country are still suffering, and their symptoms are not being adequately palliated (Wolfe, 2000). Why are children with terminal malignancy suffering? First and fore-most, death in childhood is rare. As a result, medical, psychological, social, spiritual, and other practitioners for children are not likely to have much experience in palliative and terminal care. Then too, professionals providing quality end-of-life care to adults, including hospice staff, are not likely to have sufficient training to handle the complex physical, emotional, and psychological care of dying children and their families. Children are not just small adults. The malignancies that afflict children differ substantially from the common adult cancers, and expectations of cure are much higher. These expectations for both families and treating professionals are realistically based on relatively better overall outcomes for children compared to adults with cancer (even for similar cancers). Heightened expectation of success leads to a reluctance of parents and health care providers to make a formal transition to non-cure-directed interventions. Dying children defy the natural order, and pediatric providers are more likely to suffer a sense of failure when children die. Referral to an end-of-life program may be seen as abandoning hope, which may interfere with good communication and clinical care. Families and health care providers alike vary tremendously in their state of readiness for transition to an exclusively palliative approach in treating children, even when the definition of palliative care is well established and understood (Frager, 1996). Discussion of palliative care tends to be deferred, and an artificial distinction between curative and palliative care—when there should be continuity of care—is often made. Communication across differing chronological ages, developmental levels, and decisionmaking capacities is a complex skill set to acquire and demanding to maintain. Children “have a right to be treated as developing

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Improving Palliative Care for Cancer persons, as persons with a developing capacity for rationality, autonomy, and participation in health-care decision making” (AAP, 1995). At any given age, however, they may possess none, some, or all of the capacities necessary to participate in their own health care. Children are extremely resilient and may rebound from multiple medical crises that would ordinarily be life-ending in an adult. Further, the ability of clinicians to predict timing of death is notoriously poor in the adult population and even worse when it comes to children, particularly those living with chronic illness for many years prior to death. Families and provider teams may be faced with waxing and waning palliative care needs and recurrent conversations over time about the transition to palliative care; this type of need does not fit neatly into the medical, psychological, spiritual, and economic framework established for adult end-of-life care. Despite current practices to the contrary, extrapolation of adult-derived pharmacokinetic and pharmacodynamic data is often inappropriate and sometimes dangerous for children. Although recent government regulations may change the licensing requirements for new drugs to require pediatric labeling and indications, the rarity of death in childhood still mandates large and often cumbersome multi-institutional trials of symptom control measures for dying children. Discussions and decisions surrounding end-of-life care have not consistently included the family and the child. In pediatric palliative care, only the individual child and family can determine what is best for them, based on their particular values and life experiences (Liben, 1996). Children need to participate in such discussions and decisions to the fullest extent possible, in order to achieve mastery and control over their own dying. Children have grief work to do and goodbyes to say, just as adults. Inadequate professional training in the ethical, moral, and legal implications of including children in their own care has the potential to rob children of their autonomy and to violate the concept of truth telling in medicine (Bartholome, 1993). Finally, the death of a child is one of the most significant psychological stressors a person may ever face. The bereavement literature supports the notion that the risk of prolonged, complicated grief or pathological bereavement is substantial for the parents of a child who has died. This chapter explores the issues in eight major areas: education of providers, education of children and families about the dying process, special issues in communication: adolescents and assent, delays in the initiation of palliative care for children, fragmentation of palliative care services,

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Improving Palliative Care for Cancer inadequate relief of pain and other physical symptoms, research issues, and reimbursement and regulatory issues. EDUCATION OF PROVIDERS Defining the Problem Improving the quality of care and quality of life for dying children depends on improving the quality of education in pediatric palliative care. However, there are some basic impediments to teaching about death in childhood, including prognostic uncertainty, the move of pediatric residents to more outpatient experiences, and most importantly, the relative rarity of death in childhood (resulting in less provider experience and fewer opportunities for mentoring trainees). Some of these barriers, however, may represent educational opportunities (Sahler et al., 2000). Training programs in the health professions have begun to pay increased attention to end-of-life issues, but the focus is on adults, with little content applicable to pediatrics. Examples include the American Medical Association’s Education for Physicians on End-of-Life Care (EPEC) curriculum (Emanuel et al., 1999) and the American Academy of Hospice and Palliative Care Medicine’s (AAHPM’s) “UNIPAC” self-study program for physicians who care for terminally ill patients and their families (AAHPM, 1998). Philosophically, adult and pediatric end-of-life care have much in common, but practical applications are clearly different for adults and children. There is currently no comprehensive end-of-life curriculum for pediatric palliative care, although a UNIPAC module for pediatrics is in preparation. The lack of curriculum content specific to pediatric palliative care exists at all levels and across health care professions. No national standards for curriculum content in pediatric end-of-life care exist for schools of medicine, nursing, or social work, although more medical schools are including some aspects in pediatric clerkships. The Residency Review Committee “Program Requirements for Residency Education in Pediatrics” does not contain any specific language referring to palliative care or end-of-life care. The End-of-Life Nursing Education Consortium (ELNEC) Project from the American Association of Colleges of Nursing also lacks specific pediatric language, although nursing management courses including those specific to pediatric practice would fall within its curriculum guidelines (Ferrell et al., 2000). Recent revisions to accreditation standards from the Liaison Committee on Medical Education (LCME) include a standard on end-of-life care, but it is very broad in its scope, stating that “clinical

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Improving Palliative Care for Cancer instruction should cover all organ systems, and must include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care” (Accreditation Standards, 2000). Although several academic centers have begun fellowship training programs in palliative care, there are no programs for pediatric palliative care. Reflecting this deficiency, the content outline for the AAHPM certification examination in hospice and palliative medicine lists children only as a special population under the subject heading “Death and Dying.” Hospice and home nurse agencies care almost exclusively for adults, but in the absence of special services for children, by default, dying children are cared for by them as well. These providers need education to prepare them for children’s care or, at a minimum, ready access to consultation with experts in pediatric palliation. However, there are only a few programs that educate hospice providers in the unique aspects of caring for dying children (Brenner, 1993). Although the regulatory language for hospice practice (from the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) does not specifically exclude children from consideration, there is a dearth of detailed information for programs that serve dying children (Accreditation Standards, 2000). A tool to address this problem is the Compendium for Pediatric Palliative Care, developed by the Children’s International Project on Palliative Care/Hospice Services (ChIPPS) and currently under review (Marcia Levetown, M.D.; personal communication, 2000). Once complete, it will be published by the National Hospice and Palliative Care Organization. The stated goal of the compendium is to “provide information that would enable a hospice with no pediatric experience to care for a child.” The effectiveness of this tool must be studied once it is released. The American Society of Clinical Oncology surveyed adult and pediatric oncologists in 1999 regarding palliative and end-of-life care issues. Only 10 percent of pediatric oncologists who responded reported that they had formal courses in pediatric terminal care in medical school, and only 2.2 percent reported a rotation in a palliative care or hospice service. The most common method of learning about these topics reported by pediatric oncologists was “trial and error,” and many reported anxiety about having to work with dying children. These practitioners not only are treating children, but are the role models for future generations of both generalists and specialists, who often look to oncologists for expertise in end-of-life care. Pediatricians and pediatric issues are underrepresented in national organizations and committees dealing with medical care and reimbursement. For example, although organizations such as the National Hospice and Palliative Care Organization-National Council of Hospice Professionals have some pediatric representatives on subcommittees, no subcommittee

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Improving Palliative Care for Cancer addresses the unique educational, fiscal, clinical, regulatory, philosophical, and ethical needs of a pediatric hospice population. Similarly, although organizations dedicated to pediatric care have work groups devoted to end-of-life care (e.g., the Children’s Oncology Group [COG], the American Academy of Pediatrics [AAP], and Children’s Hospice International) and continue to advocate for the needs of dying children, unifying, collaborative national efforts to bring provider education to the forefront do not exist. Finally, there are only a handful of quality textbooks targeted to pediatric palliative care, and the subject is underrepresented in the classic adult textbooks such as Supportive Care in Oncology (Weisman, 1998) or the Oxford Textbook of Palliative Medicine (Doyle et al., 1998). Examples of essential pediatric texts include Hospice Care for Children (Armstrong-Dailey and Goltzer, 1993), Care of the Dying Child (Goldman, 1994), and Cancer Pain Relief and Palliative Care in Children (WHO, 1998) as well as two explorations of the more spiritual aspects of childhood death, The Private Lives of Dying Children (Bluebond-Langer, 1978) and Armfuls of Time (Sourkes, 1995). Next Steps Develop content for pediatric end-of-life care curricula in medical, nursing, chaplaincy, and social work training programs. The challenges facing creators of curricula include defining educational objectives; outlining the content of training; selecting teaching methods; exploring personal attitudes toward death, dying, and bereavement; promoting interdisciplinary collaboration; evaluating training; and defining the role and function of educators in pediatric palliative care (see Papadatou, 1997, for a discussion of challenges in creating a pediatric palliative care course). Develop curricula with both traditional and alternative teaching methods. Standard didactic approaches are the tradition in many post-secondary education programs, but these approaches do not optimally address the emotional and psychological needs of students in a complex field such as pediatric palliative care. Alternative methods such as small group discussion, role playing, experiential learning by partnering with mentors, supervised clinical practice, and/or self-directed on-line learning may better suit training at all levels. Small studies have demonstrated the efficacy of nontraditional learning methods, including those derived from the psychology world, in altering attitudes of students regarding end-of-life issues (Razavi et al., 1988, 1991). At the Children’s Hospital of Philadelphia, a pilot study is under way to explore the role of an intensive, brief cognitive-behavioral intervention for staff in changing values and beliefs about pediatric palliative care.

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Improving Palliative Care for Cancer Evaluate the effectiveness of educational materials and methods in pediatric palliative care. Curricula such as EPEC would be expected to be effective, but this cannot be assumed without appropriate evaluation. New outcome measures may be required to assess the skills of trainees and practitioners, incorporating assessments not only of knowledge about death and dying, but also of empathy, spiritual balance, educational capacity and effectiveness, or even business acumen. Develop curricula that teach intact medical care teams the tenets of palliative care. Parents of seriously ill children have indicated that they strongly value the continuity of care achieved when the primary oncology team continues to care for their child through the time of death. While this delivers the desired continuity to parents, it has resulted in inadequate delivery of palliative care. Training of intact teams may improve the delivery of care as well as facilitate involvement of the necessary professionals. Create and fund pediatric palliative care training and fellowship programs. Effective training in pediatric palliative care will depend upon many factors, including exposure to a wide array of clinical materials relevant to the field of study; good mentorship; well-defined evidence-based curricula; and the availability of a suitable academic environment to support the study of related fields such as bioethics, adult palliative care, epidemiology and biostatistics, or pharmacology. “Centers of Excellence” in pediatric palliative care should be created in which training and fellowship programs can offer education to adult hospice workers who care for the occasional dying child. Add appropriate end-of-life content to general pediatric, pediatric subspecialty, and hospice and palliative medicine certifying examinations. Content on end-of-life care should be added not only to general pediatric board examinations, but also to subspecialty certifications such as intensive care, cardiology, neurology, and neonatology, which along with oncology have the most pediatric deaths. Hospice and palliative care practitioners must have a minimum fund of knowledge in order to provide comprehensive and compassionate care to dying children. Add language to home health and hospice regulations specifically mandating competencies in pediatric end-of-life care. Providers should have a minimum fund of knowledge regarding medical, physiological, emotional, and developmental issues of the dying child. The pediatric UNIPAC curriculum (when available) could be made mandatory for providers who will care for children, and successful completion of the curriculum could be a criterion for individual and institutional licensure. Develop national collaborative efforts to advocate for education in pediatric end-of-life care. To meet the educational needs of professionals caring for dying children, pediatric palliative care training sessions should

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Improving Palliative Care for Cancer be offered in conjunction with national meetings of organizations that care for children with life-threatening illness (e.g., COG, AAP, and the American Society of Pediatric Hematology/Oncology). For adult hospice providers, pediatric end-of-life curricula should be offered at national meetings of the relevant professions. Collaboration between programs and interested individuals dedicated to pediatric palliative care (e.g., members of the American Association of Hospice and Palliative Medicine, the National Hospice and Palliative Care Organization, and Children’s Hospice International), as well as funding for these collaborations, must be a national priority. EDUCATION OF CHILDREN AND FAMILIES ABOUT THE DYING PROCESS Defining the Problem Many families who are navigating the health care system during the treatment of their child’s cancer often joke that they should receive honorary medical or nursing licenses. This comment, although somewhat tongue-in-cheek, underscores the complexity of the tasks of children and families facing life-threatening illness. From the time of diagnosis to the time of cure or death, families must assimilate an overwhelming amount of information, function as advocates for their child and themselves, make informed decisions (often without adequate information), and negotiate ever-changing systems for delivery of care (including insurance plans). All this must be accomplished while continuing to work or care for other family members at home. These tasks become increasingly burdensome and difficult when a child’s prognosis is not good, and families must balance quality-of-life issues with their drive and need to “leave no stone unturned” in pursuing treatment options. In this scenario, provision of accurate, up-to-date, and comprehensive information in an understandable manner is even more crucial. It is at the stage of diagnosis of a life-limiting prognosis that families are faced with seemingly dichotomous treatment options. The availability of Phase I and II clinical trials for pediatric oncology patients offers continued “aggressive” therapy with a small chance of physical or life-prolonging benefit to the patient, and possibly with altruistic benefits. At the same time, palliative care options need to be discussed so that optimal symptom management can preserve patient comfort and dignity. It is this simultaneous provision of potentially curative and palliative medicine that currently escapes us. If resources for providers of pediatric end-of-life care are lacking, the availability of educational materials for affected children and their families

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Improving Palliative Care for Cancer is even further behind. Some examples of information required by families to make good decisions include understanding the diagnosis and prognosis; the likely effects of the disease on the patient; other relevant physical or emotional problems likely to impact the course of illness; other symptoms likely to occur; what death will look and be like with and without artificial interventions; uses and interactions of medications; the availability of pharmacologic and nonpharmacologic interventions to ease suffering; the availability of professional and nonprofessional resources to aid the family; physical modifications and facilities to make home or transportation more accessible; and what changes in functional status are likely to occur. In short, families need a complete appreciation of the effects of a life-threatening illness on the physical, psychological, spiritual, and practical dimensions of care. An additional educational need regards advance directives. With adults, there is at least a chance that end-of-life wishes will have been considered before being faced with a life-threatening illness, but this almost never occurs in the pediatric setting. Most pediatricians and even pediatric sub-specialists are not skilled in discussing advance directives. Research clearly demonstrates that patients and families prefer to be guided in these discussions by practitioners they trust (Frager, 1996; Whittam, 1993). Resources to make decisions concerning withdrawal of life-sustaining treatment (including nutrition and hydration), and covering principles of palliative care and issues of medical futility, are not currently available to pediatric patients and their families. Although there are books available to parents describing leukemia and other cancers, there is not much available to families to help prepare them for the medical and psychosocial details of the death of their child. Next Steps Develop protocols for use by interdisciplinary teams to explain disease and prognosis in terms that families and patients can understand. Content of discussions should be spelled out and be accompanied by delivery of the material in written form for later review. Develop materials for child patients at every developmental level and their families with disease-specific information, prognosis, palliative care terminology and options, and clinical trial terminology and options. Develop resources that detail expected physical changes toward the end of life. Involve parents and older adolescents (when appropriate) in national organizations developing policy for pediatric hospice and palliative care standards and reimbursement.

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Improving Palliative Care for Cancer ADOLESCENTS AND ASSENT Defining the Problem Caring for Adolescents Adolescents facing death have palliative care needs substantially different from those of younger children or adults. The unique psychosocial issues for dying adolescents—which relate to the normal developmental tasks of this time of life—include greater focus on physical appearance, reversal of developing independence, lack of control, loss of self-confidence, social isolation, disruption of future plans, and desire to be listened to by their care providers (Carr-Gregg et al., 1997). At initiation and during provision of palliative care, communication with adolescents requires particular sensitivity to the concerns characteristic of this age group. Adolescents with cancer do not have proportionate access to clinical trials sponsored by national pediatric oncology cooperative groups, a possible factor in the relatively lower survival rates observed in this age group (Bleyer et al., 1997). It is not clear whether similar differences exist for adolescents in their access to pediatric palliative care services or in their qualitative experience while receiving services. Issues of Assent and Consent Children who are developmentally capable of participating in their own health care decisionmaking are often prevented from doing so. Historically, children have been declared legally and ethically incompetent to participate in decisions about their own health care. Except for circumstances involving mature or emancipated minors, decisions regarding health care for children under age 18 generally are made by surrogate decisionmakers, usually parents. However, some health care providers (and most ethicists and palliative care professionals) believe that children who have reached the age of assent and are capable of expressing a preference should be given choices and have their wishes respected. This is especially true in the area of end-of-life care, when quality, not quantity, of life is the main focus. After all, who better can decide what constitutes quality of life for an individual than that person? Leikin (1993) writes: …if a minor has experienced an illness for some time, understands it and the benefits and burdens of its treatment, has the ability to reason about it, has previously been involved in decision making about it, and has a comprehension of death that recognizes its personal significance and finality, then that person, irrespective of age, is competent to consent to forgoing life-sustaining treatment.

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Improving Palliative Care for Cancer In pediatrics, consent actually amounts to authorization by the parents for treatments and procedures, reflecting the assumption that parents are the most authentic spokespeople for their children. However, most children are capable of consent after age 14, by which time, with normal development, they possess full decisional capacity and flexible thinking (Brock, 1989). “Assent” refers to a child’s agreement with the proposed treatment. Although it is not a term defined in law, assent respects children as individuals with developing capacities for participation in health care decisionmaking. Conversely, “coercion” describes an essentially paternalistic act of forcing participation in treatment or research, which should be avoided. Assent in pediatric practice consists of four basic elements: demonstrating respect for the child as a patient and as a developing person by assisting the child to develop an appropriate awareness of illness; disclosing the nature of the proposed intervention and what the child is likely to experience (truth telling); assessing the child’s understanding of information and the factors influencing his or her evaluation; and demonstrating respect for emerging autonomy and the development of decisionmaking capacity by soliciting expressions of willingness on the part of the child to accept the intervention (Bartholome, 1993). The American Academy of Pediatrics Committee on Bioethics recommends that assent for treatment should be obtained from the pediatric patient when developmentally appropriate and should be binding when used in the research setting (AAP, 1995). However, guidelines from the National Institutes of Health (NIH) Office for Protection from Research Risks (OPRR) state that assent or dissent is conditional on parental permission if participation in research is potentially beneficial to the child, in which case parental permission overrides the child’s dissent (OPRR, 1991). Legal and ethical debates about the appropriate age of consent for medical treatment or research participation are interesting and important but oversimplify the issues when it comes to caring for adolescent patients. In the first place, decisionmaking capacity itself is not a static phenomenon; it can be intermittent or fluctuating, and it may vary over time with changes in clinical condition. Secondly, people are not static either: like adults, adolescent patients vary significantly in their ability to comprehend what is happening to them. Care providers, therefore, need to be attentive to changing competence in adolescent patients (Friebert and Kodish, 1999).

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Improving Palliative Care for Cancer other resources. Accepting hospice means that families have abandoned hope for a cure and have begun to focus on the fact that the child will eventually die. This acceptance of the reality of death is one of a series of steps in a palliative care approach. Unfortunately, acceptance of terminal illness is also a prerequisite for receiving palliative care services through hospice. This is a no-win situation in which acceptance of death is both a prerequisite for eligibility and an expected outcome of palliative care intervention. The Medicaid hospice benefit provides reimbursement for expert pain and symptom management, grief and bereavement counseling, pastoral care counseling, and home nursing care. Experience in clinical practice, however, shows that children with chronic, life-threatening and terminal illnesses need these services long before they become eligible to receive hospice care (Kane et al., 2000). This includes patients whose disease is likely to be incurable but who continue to be treated with the intent to cure (e.g., with a Phase I agent), even though the chance that treatment may be of benefit is very small and may entail significant toxicity. Reimbursement Practices in Hospice and Palliative Care Hospice financing mechanisms are often inimical to quality palliative care. Hospice organizations—which are usually reimbursed at a fixed per diem rate—will not deliver some expensive services for fear of jeopardizing the solvency of their programs (Field and Cassel, 1997b). From a financial perspective, the “ideal” hospice patient is the one who lives the longest with minimal interventions in both personnel time and pharmacotherapy. Thus, hospice is placed in the situation of favoring admission of patients who will not receive medical interventions that may prolong their life. Also, it is more likely to refuse admission to patients with a disease known to be incurable but who continue potentially life-prolonging interventions. This is particularly detrimental for the pediatric cancer patient. Examples where current guidelines may interfere with effective palliative care include the child receiving therapy for a highly malignant disease for whom long-term disease-free survival is known to be unlikely at diagnosis, the child enrolled in a Phase I or II study or its equivalent, and the child with disease refractory to experimental or conventional treatment who most likely will die from his or her disease but whose parents continue to hope for cure. A clinical case may serve to illustrate this situation. “AJ” was a 20-year-old patient with acute lymphoblastic leukemia who relapsed in the bone marrow for the fourth time. He had received care from his oncology team for eight years. Without a bone marrow transplantation, the prognosis for long-term survival was poor, and this was known by the medical team, patient, and family. However, there was no suitable bone marrow

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Improving Palliative Care for Cancer donor available: he had no siblings, and there were no unrelated donors who matched sufficiently well. Nonetheless, the patient and his family continued to choose treatment with curative intent hoping that his leukemia would stay in remission while the search for a marrow donor continued. At the time of his fourth relapse, he was still refusing hospice services—but he was not in denial of reality. He had decided he wanted all medical interventions necessary to keep him alive for as long as possible, but he refused artificial life support, mechanical ventilation, and cardiopulmonary resuscitation. He had signed an out-of-hospital do-not-resuscitate (DNR) form and discussed advance directives, choosing his mother as a surrogate decisionmaker if he was unable to make his own decisions. At one point in this process, he was placed in a difficult dilemma: choose treatment for your leukemia (oral palliative chemotherapy, transfusion of blood products) or hospice services at home. Hospice refused to admit him because of the high cost of care related to palliative interventions necessary to prolong his life, which he believed continued to be of good quality. This young man eventually died in the hospital from a serious infection. He deserved the benefit of palliative interventions but never received hospice care. This seems to be the case for the majority of pediatric oncology patients who die from progressive disease. Another problem encountered in pediatrics is the choice parents sometimes have to make between hospice care and home nursing services for their ill child. Children who are eligible for services under state Medicaid waiver programs for medically fragile children (potentially any child with a life-limiting illness) are generally not eligible for hospice benefits under Medicaid or private insurers. This reality puts parents in a no-win situation, forcing them to choose between hands-on nursing support hours versus the holistic family-centered care provided by a supportive care or hospice and palliative care program. Most chronically or terminally ill children would benefit from some hours of home nursing support, as defined by the Medicaid criteria. However, most hospice and palliative care programs do not provide continuous nursing support in the home, unless they’re paired in a contractual arrangement with a home care company or unless they have chosen to bear the high cost of maintaining a home care license within a hospice. “Bridge programs” have attempted to circumvent this issue by covering a severely ill child in a home care model until the child is strictly “hospice eligible.” Reimbursement for these comprehensive services is sparse at best, and usually means that hospice and palliative care programs are following families as “self- pay” until the very end of the child’s life or until the child is placed in a residential facility when home care needs are too great. Under these circumstances, the only part of the multidisciplinary care plan that is potentially reimbursable is physician billing, and the myriad other impor-

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Improving Palliative Care for Cancer tant services provided by the rest of the hospice or palliative care team go financially unrewarded. This reality creates something of a paradox. Hospice and palliative care organizations often recognize the importance of establishing a separate pediatric team because of the issues unique to pediatric end-of-life care. However, the ability to lose money on a pediatric program, due to poor reimbursement and high numbers of self-pay (usually meaning “no pay”) patients, puts undue pressure on smaller programs and necessitates high levels of private, philanthropic support. The responsibility for providing specialized pediatric palliative care services, therefore, generally falls on agencies that are large enough to absorb financial losses on the pediatric side. Such programs generally have as part of their mission statements a commitment to providing quality end-of-life care to children and do so primarily as a community service or as a marketing tool, neither of which is necessarily sustainable. In addition to putting families and providers in a difficult situation, the current system is also internally inconsistent. It is acceptable for patients with third-party insurance and no financial eligibility for Medicaid to tap into Medicaid waiver programs for nursing support. However, Medicaid patients cannot have both, forcing families to choose between nursing support and hospice or palliative care services. The justification for this policy is to prevent duplication of services by excluding patients receiving waiver support from being eligible for the hospice benefit and other Medicaid programs. The “duplication of service argument” applies only to low-income patients and should be amended. Even in situations where pediatric patients are enrolled “on the benefit,” the contracted rate of reimbursement pays for only a fraction of the services provided. Patients who are on “full benefit” are entitled to all of the core services modeled after the Medicare hospice benefit, but this does not include creative arts therapies (e.g., art, dance and movement, music, and drama therapies), nor does it provide bereavement services beyond 13 months, too short for many families who lose children to illness. Longer follow-up is unlikely to be reimbursed by any formal mechanism other than philanthropic support. Similarly, spiritual care, and child life and expressive therapy are particularly important in the pediatric arena as families struggle with a child’s terminal illness. The literature abounds with examples of the importance of art, music, and movement therapy for dying children and their families, particularly siblings, in supporting effective coping and grieving. Yet these disciplines are not reimbursed at all in the current benefit system. Apart from the issues discussed above, pediatric palliative care faces an additional challenge. While no direct reimbursement for palliative care is available for any patient, adult palliative care programs are able to capture some revenue through physician billing under different codes (e.g., for

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Improving Palliative Care for Cancer symptom management) than those used by the primary care provider or other specialists involved in the patient’s care. In pediatrics, however, this revenue stream is difficult to capture without the services of a pediatric hospice or palliative care physician. Some hospitals and acute care institutions allow internal medicine and family practice physicians to see pediatric patients (especially adolescents), which affords pediatric patients the benefit of hospice or palliative care expertise and allows practitioners to bill for their services. However, these patients are then not receiving specialized pediatric care. The likelihood of finding expertise in pediatric palliative care and hospice is currently low and drops even further when patients are not within a hospital setting. One additional problem in pediatric hospice care is the shortage of contracted beds for symptom control or hospice admissions within acute care settings. In large hospitals, adult hospice programs have little trouble securing a few beds to be used for their patients. In pediatrics, however, hospitals are reluctant to commit beds to hospice care because they may be empty much of the time but could be used for other admissions if available. Potential Remedies Set a minimum reimbursement rate for physician communication time with parents and with patients. Legislation may be required to prevent denial of payment for this basic service. Enforce payment for telephone time and care plan oversight time. Enforce reimbursement of team conferences with patients and families at a rate that reflects participation of the multidisciplinary team. Develop and test palliative care codes for reimbursement of physicians and other health care providers for pediatric palliative care interventions offered based on the goals of medical care: Palliative care codes: services offered for patients with incurable disease receiving treatment with the intent to prolong a life of good quality Hospice care codes: palliative care in which the primary focus of treatment is end-of-life comfort care Bereavement care codes: palliative care in the form of grief and bereavement counseling for surviving family members Develop patient evaluation and management codes for reimbursement of palliative care services in different settings. Include funding mechanisms for the entire multidisciplinary team, including mental health and bereavement workers. Create contractual arrangements for a small number of beds in pediatric hospitals to be used for children needing respite or symptom control care, with appropriate reimbursement.

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Improving Palliative Care for Cancer RESEARCH NEEDS IN PEDIATRIC ONCOLOGY END-OF-LIFE CARE The research base in pediatric oncology for dying children is deficient in every area, directly affecting the quality of the care that children receive. In addition to the important work of developing and testing new treatments to reduce the number of children who face death from cancer, research must focus on the children who do, in fact, die. Results of research in the following areas could be of direct benefit in the treatment of dying children. Describe current end-of-life care practice patterns. The descriptive information available for the care of dying children is inadequate (e.g., very little information on the use of hospice, the use of palliative care teams or pain services, incidence of death at home versus the hospital or other inpatient facility, use of advance directives or DNR orders and the duration these are in effect before death, use of psychosocial multidisciplinary teams, and patient and family satisfaction with these services). Create tools to assess the quality of pediatric end-of-life care. A single instrument (questionnaire) has been validated for pediatrics, consisting of a two-hour interview, which is not practical for broad use (Wolfe, 2000). New instruments (either completely new or adapted from adult models) for widespread use are needed. Evaluate pediatric models for provider-patient-family communication. Research is needed to define communication models that prevent psychological harm to parents and children and that result in a sense of control and efficacy for parents. Research questions include how to communicate bad news effectively, how to discuss withdrawal of therapies, how to teach what to expect as their child dies, how to communicate goals of care that incorporate both curative and palliative therapies without a feeling of “giving up,” and how to facilitate communication across treatment sites. Create and evaluate comprehensive parent educational materials, including, for example, what to expect during withdrawal of support, what will be experienced during an expected death at home, and how to advocate for symptom control. Evaluate models of decisionmaking that are family centered, and emphasize the involvement of the child. Evaluate models of care that address the needs of siblings. Investigate the barriers to optimal symptom control in pediatric oncology practice. Develop and validate symptom (and suffering) assessment tools for the pediatric population to be used for both research and treatment.

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Improving Palliative Care for Cancer Initiate clinical trials in symptom control within the Children’s Oncology Group. Incorporate symptom control algorithms into COG clinical trials. Develop models of care incorporating the principles of palliative care throughout the mainstream of medical therapy of seriously ill pediatric oncology patients, from the time of diagnosis to the time of death. Investigate the impact on care delivery of barriers to optimal care. Develop and evaluate a “mobile medical record” for palliative care content that will follow the patient across various treatment sites. Assess the needs of medical providers caring for dying children. Develop palliative care codes for reimbursement of physicians and other health care providers for pediatric palliative care interventions offered across settings based on the goals of medical care. Investigate the financial implications of care models developed as discussed above. Develop education strategies for providers. PEDIATRIC ONCOLOGY END-OF-LIFE CARE: FUTURE DIRECTIONS The education of providers must be adapted to meet the unique needs of those caring for dying children, and must include both traditional and nontraditional teaching methods. The recommendations below include mechanisms for accountability. Develop educational materials for families that facilitate the most complete understanding of the child’s condition and prepare them as much as possible for what will occur as the child dies. In this manner, patients and families will be empowered to participate in treatment decisions. Facilitate the involvement of children in their treatment decisions (assent). Develop and evaluate models of oncology care that incorporate palliative care principles and facilitate continuity of care by providers educated in pediatric end-of-life care. Develop strategies to address the inadequate relief of pain and other symptoms in pediatric oncology patients nearing the end of life. Institute regulatory and reimbursement policies that adequately address the complexity and time involved in caring for children with advanced illness. Develop research initiatives that will assess current practice patterns, evaluate models of care delivery, evaluate models of communication and decisionmaking, study methods of symptom control, evaluate the feasibility and cost-effectiveness of new reimbursement models, and evaluate innovative educational initiatives.

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