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6 End-of-Life Care: Special Issues in Pediatric Oncology
Pages 161-198

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From page 161...
... 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~.
From page 162...
... 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.
From page 163...
... 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.
From page 164...
... 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)
From page 165...
... 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.
From page 166...
... 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)
From page 167...
... To meet the educational needs of professionals caring for dying children, pediatric palliative care training sessions should
From page 168...
... 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 .
From page 169...
... , 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.
From page 170...
... 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 own health care decisionmaking are often prevented from doing so.
From page 171...
... "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.
From page 172...
... · Develop standards for decisionmaking capacity (including advance directives) in the pediatric population based on developmental level or
From page 173...
... This is consistent with a recent study in which terminally ill children with cancer were more likely to be described by their parents as peaceful and calm during their last month of life if their hospice care decision occurred earlier in the course of their illness (Wolfe et al., 2000~. Several barriers can prevent timely initiation of palliative care.
From page 174...
... indicates relatively few organized pediatric palliative care services in operation. Adult hospice providers are not experienced with children; parents or providers are understandably reluctant to transition care to such providers.
From page 175...
... Even though it appears substantially less expensive to care for dying children at home than in a hospital (Martinson, 1993b) , the cost of home care may be a barrier for some patients, especially those whose care is publicly funded (Children's Hospice International, 1998; Schweitzer et al., 1993~.
From page 176...
... Recent studies indicate that fragmentation of care may contribute to the distress of dying children and their families. In a recent study, parents of children with cancer who had died at home suggested better coordination of care as a way of improving palliative care services (Collins et al., 1998~.
From page 177...
... The Pediatric Palliative Care Project at Children's Hospital and Regional Medical Center in Seattle, Washington, is another model, begun in 1998 and funded by the Robert Wood Johnson Foundation (http:// www.seattlechildrens.org/peUpalcare/~. It is evaluating the use of symptom control algorithms, a decisionmaking and charting tool, and a case man
From page 178...
... for children is under development. Potential Solutions · Develop comprehensive pediatric palliative care services that include a family-oriented, relationship-centered focus.
From page 179...
... . "Home Care for the Child with Cancer," was a nursing research study initiated in 1976 with funding from the National Cancer Institute to demonstrate the feasibility and benefits of home care for dying children.
From page 180...
... Without essential data from welldesigned clinical trials, practitioners of pediatric palliative care are left to extrapolate from adult studies or to practice anecdotal medicine. Quality of care in any other medical subspecialty under these conditions would be considered substandard.
From page 181...
... . Potential Remedies · Develop care models that integrate palliative care specialists, symptom control specialists, and psychosocial services into the mainstream of pediatric oncology care.
From page 182...
... Moreover, billing codes do not distinguish among the subgroups of seriously ill pediatric patients with chronic disease, cognitive impairment, and/or complex life-threatening illnesses, for whom multiple specialty physicians are involved and for whom advance care planning and coordination of care among multiple physicians and services are labor intensive. Reimbursement rules are discussed here in the context of dying children, but the principles and difficulties are relevant throughout the course of a child's cancer, regardless of diagnosis or prognosis.
From page 183...
... The prolonged services codes are intended to be used in conjunction with office visit codes or inpatient visit codes (CPT codes 99201-99215, 99241-99245, 99301-99350~. These office or inpatient visits are described as appropriately billed for counseling time if the time spent counseling is more than 50 percent of the physician-patient interaction.
From page 184...
... Lack of reimbursement or poor reimbursement for the prolonged serv~ces codes is a serious problem for pediatrics, but the total nonreimbursement of non-face-to-face time codes is an even greater problem for several reasons. First, the parents of seriously ill children often wish to discuss treatment issues particularly issues regarding the possible death of the child without their child present.
From page 185...
... Even when these codes are reimbursed, the rate is not sufficient to support a clinical practice that includes a multidisciplinary team, despite its value to patients and families: · A clinic visit (99215) with extra counseling time, totaling 80 minutes, was reimbursed at $64.62 with the prolonged services code denied.
From page 186...
... pediatric oncology study group recently conducted a study of time spent in telephone care (NACHRI, l999~. In a four week study, oncology practices logged 18 to 84 hours of calls.
From page 187...
... The great majority of terminally ill children and their parents are not willing to sign on to hospice service for a variety of reasons. To accept hospice care, both parents and physicians must have a minimal level of "uncertainty" regarding the child's prognosis and must have exhausted all
From page 188...
... 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.
From page 189...
... 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.
From page 190...
... 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.
From page 191...
... 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.
From page 192...
... 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)
From page 193...
... · 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.
From page 194...
... 1978. The Private Lives of Dying Children.
From page 195...
... Frager G Pediatric palliative care: building the model, bridging the gaps.
From page 196...
... et al. Guidelines for assistance to terminally ill children with cancer: a report of the SIOP working committee on psychosocial issues in pediatric oncology.
From page 197...
... Papadatou D Training health professionals in caring for dying children and grieving families.
From page 198...
... Whittam EH. Terminal care of the dying child: psychosocial implications of care.


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