When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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Appendix G: Education in Pediatric Palliative Care
Appendix G: Education in Pediatric Palliative Care
Pages 599-637
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From page 599... ...
Lack of provider and patient-family education has been cited as a major barrier to children and families accessing skilled palliative care t11. The purpose of this review is to address the current state of the art and state of the science in pediatric palliative care education.
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From page 600... ...
But the principles of palliative care mirror the perceived changes in medical education which deans generally support. For example, who would disagree that our medical students should · Spend more time in the community and in the homes of patients · Develop a sense of whole person care and move away from a single minded interest in the biology of disease · Learn to work in health care teams · Develop improved skills in communication, and · Consider medical issues in ethical terms Viewed in this light, palliative care education does not provide the student with information on a "special interest"; rather, the student has the opportunity to work in an environment fulfilling most of the goals of basic medical education.
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From page 601... ...
medical schools. Palliative care was identified by pediatric oncology and family practice educators as needing more undergraduate medical curriculum hours, but it was not on the list of the five cancer topics identified as most important by all respondents (these were early detection, diagnostic methods, tumor biology, cancer prevention, and natural history)
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From page 602... ...
t191 describe, for example, the project "Strengthening Nursing Education to Improve End of Life Care" funded by the Robert Wood Johnson Foundation. This project, in response to the 1997 IOM report, has as its goals improving the content regarding EOL care in nursing textbooks, ensuring the adequacy of content in end-of-life care, as tested by the NCLEX exam (National Council of State Boards of Nursing)
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From page 603... ...
Pediatric palliative medicine was not included as a ques.
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From page 604... ...
, during their clinical years. Pediatric Resident-Program Director Survey In order to assess the educational experiences of pediatric residents on palliative medicine and end-of-life care and to determine how these can be incorporated as part of their residency curriculum we conducted a survey of pediatric residency program directors and pediatric residents in training (T.
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From page 605... ...
Only 38.2 percent of program directors believe that their graduating residents are competent in pediatric palliative care. · According to program directors, learning of palliative medicine and end-of-life care is best when delivered informally at the bedside of patients and during rounds.
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From page 606... ...
Although there are no specific standards addressing pediatric palliative care in hospitals, home health, or hospice, end-of-life issues and age-specific care are addressed separately. For example, the CAMH "Assessment of Patients (PE)
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From page 607... ...
Single-institution assessments in adult palliative medicine have been reported (e.g., t561~; there is one published on pediatric palliative care t571 for residents. The Educational Development Center has also performed a needs assessment in several institutions; this work to date has not been published.
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From page 608... ...
Compendium of Pediatric Palliative Care, sponsored by the National Hospice and Palliative Care Organization (NHPCO) ; the End-of-Life Nursing Education Consortium (ELNEC)
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From page 609... ...
· 1 ~ ~ . 1 1 1 t;ducatlonal Methodologies A wide variety of teaching methods can be found in the adult palliative care literature, including didactic sessions, supervised clinical practice, computer-based learning, sensitivity groups, journal keeping, mentoring, role play, simulated/standardized patients, video or film viewing, small group discussion, clinical case discussion, interdisciplinary teaching, hospice and home visits, portfolio learning, and psychological training such as cognitive-behavioral methods t64-671.
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From page 610... ...
An impartial observer should be considered a part of standardized patient evaluations t731. A recent publication describes the creation of a standardized family with 16- and 20-year-old children to teach interpersonal skills, interviewing, communication, counseling, and history-taking skills for medical students t741.
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From page 611... ...
t891 described a randomized trial of portfolio learning in cancer education. The project aimed to give students a "holistic understanding" of disease and treatment impact on patients and families as well as of the natural history of disease.
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From page 612... ...
The Oxford Textbook of Palliative Medicine t1011 contains several chapters on pediatric palliative care, including pain control, symptom control, psychological adaptation, family adjustment and support, special services for children, the development of pediatric palliative care, and ethical frameworks. There are also several chapters devoted to education, including education of social workers, clergy, and volunteers.
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From page 613... ...
The Handbook of Psychiatry in Palliative Medicine t1051 has two pediatric chapters, "Psychiatric Care of the Terminally Ill Child" and "Psychotherapy with the Dying Child"; bereavement care and other psychospiritual needs of children of dying cancer patients are briefly addressed in other chapters. Several resources are available specific to pediatric palliative care.
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From page 614... ...
The Hospice and Palliative Medicine Core Curriculum and Review Syllabus has a pediatric chapter t1201. ITS 1 TO 1 ~ T · ~ _ T · TO 1 · '_ the tnu-ot-~te Cursing Education consortium twww.aacn.nche.edu/ einec)
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From page 615... ...
Association of Professional Chaplains (APC) 1701 East Woodfield Road, Suite 311, Schaumburg, IL 60172; www.professionalchaplains.org APC is an interfaith professional pastoral care association of providers of pastoral care endorsed by faith groups to serve persons in physical, spiritual, or mental need in diverse settings throughout the world.
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From page 616... ...
CSWE is recognized by the Council for Higher Education Accreditation as the sole accrediting agency for social work education in the United States. American Board of Examiners in Clinical Social Work (ABECSW)
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From page 617... ...
, several innovative educational programs in palliative and end-of-life social work education have been funded. Examples include a collaborative social work/clergy graduate curriculum (Katherine Walsh-Burke and John Linder, http://www.soros.org/deathlnewsletter8/sociainewsletter.htmI)
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From page 618... ...
Training stresses clevelopment of competence in evaluation of mood and anxiety clisorclers, pain, family and caregiver interactions, psychological and cognitive functioning, and existential concerns. There are no accrecliteci postdoctoral residency training sites in palliative medicine or EOL care available for psychology doctoral graduates.
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From page 619... ...
ninac. org/ NLNAC is responsible for the specialized accreditation of nursing education schools and programs, both post-secondary and higher degrees (master's, baccalaureate, associate, diploma, and practical nursing program)
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From page 620... ...
AACN's educational, research, government advocacy, data collection, publications, and other programs work to establish quality standards for bachelor's and graduate degree nursing education, assist deans and directors to implement those standards, influence the nursing profession to improve health care, and promote public support of baccalaureate and graduate education, research, and practice in nursing. AACN found that although nursing was felt to be the leader and expert in end-of-life care, "after reviewing accreditation standards, licensure criteria, and curriculum content it became clear that end-of-life education and training is inconsistent at best and sometimes completely neglected within nursing curricula" (http://www.aacn.nche.edu/Publications/ deathfin.htm)
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From page 621... ...
Nursing is focused on "integrating the influence of the human experience," and communication is a core competency throughout all curricula. Nursing curriculum guidelines reviewed demonstrate a lack of pediatric palliative or EOL care-relevant content.
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From page 622... ...
New core competencies outlined by ACGME and ABMS may facilitate the introduction of child-focused, family-oriented care aimed at the relief of suffering and achieving the best possible quality of life for sick children and their families. Accreditation Council for Graduate Medical Education Suite 2000, 515 North State Street, Chicago, IL 60610-4322; Phone: (312)
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From page 623... ...
The scope of training for pediatricians includes relevant areas such as medical ethics including confidentiality, consent, relationship to physicians and patients, "issues of life-sustaining treatments," communication and interpersonal skills, emotional and cognitive stages of human development, psychosocial support of the seriously ill child, and interdisciplinary care Absent are educational experiences related to quality of life, spiritual care of the dying child, the child's perception of illness or death, grief and bereavement, medical futility, pain and symptom management, assessment of goals of care, communication of bad news or advanced care planning, uniqueness of the child and family as a functional unit, and palliative care or hospice. Program Requirements for Residency Education in the S?
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From page 624... ...
Residents should be guided in the development of skills in communication and counseling, including the recognition and management of psychosocial problems in pediatric patients." Required training in palliative medicine, EOL care, and relevant endof-life ethical issues is notably absent in other pediatric subspecialties with a high number of pediatric deaths such as pulmonology, critical care medicine and neonatal care. Program Requirements for Residency Edn,cation in Family Practice Family physicians are expected to assume responsibility for the total health care of the individual and the family, taking into account the "social behavioral, economic, cultural, and biologic dimensions.
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From page 625... ...
. General program requirements for residency education in neurology include "instruction in appropriate and compassionate methods of end-of-life palliative care, including adequate pain relief and psychosocial support and counseling for patients and family members about these issues." Obstetrics and gynecology requirements list "compassionate patient care" as one of the goals and emphasize "interpersonal and communication skills and adherence to ethical principles." Palliative care or EOL care and pain management are not listed as requirements for certification.
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From page 626... ...
None of the outlines list religion and spirituality. Accreditation Standards: Undergraduate Medical Education Requirements for undergraduate medical education lack standards regarding palliative and end-of-life care for children.
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From page 627... ...
medical schools. Recent revisions to accreditation standards from LCME include a standard on end-oflife care, but it is very broad in its scope: "Clinical instruction should cover all organ systems, and must include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care." Additional content guidelines do fit within the broad principles of pediatric palliative care, including "ethical, behavioral, and socioeconomic subjects pertinent to medicine"; '`broad-based clinical education programs that equip students with the knowledge' skills, attitudes, and behaviors necessary for further training in the practice of medicine"; "the need for students to be concerned with the total medical needs of their patients and the effect on their health of social and cultural circumstances"; "an understanding of the manner in which people of diverse cultures and belief systems perceive health and illness and respond to various symptoms, diseases, and treat11 1 · 1 1 1 ments"; and "the LCME encourages experimentation that will increase the efficiency and effectiveness of medical education." Council on Medical Student Education in Pediatrics (COMSEP)
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From page 628... ...
Some age-appropriate language was inserted in the current draft of the training standards to affirm the need to educate adult providers in the care of life-threatened children, but a specific track for pediatric palliative care graduate training was not created in the initial guideline iteration. Abroad, a Pediatric option exists for the diploma in palliative medicine as well as the master in science in palliative medicine program, a one-year academic course offered at the University of Wales College of Medicine.
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From page 629... ...
t1471 created a hospice/palliative medicine rotation for fellows training in hematology-oncology. Improvements in fellows' skill in pain and symptom management and understanding of hospice and palliative care were reported.
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From page 630... ...
They founci that less than 25 percent of a search engine's first pages of links leci to relevant content, less than half of English and less than a quarter of Spanish Web sites contained more than minimal clinical coverage, and all English and most Spanish Web sites required a greater high school reacting proficiency. These results, although not specific for encl-of-life care, suggest that efficient access to unclerstanclable health-relateci Internet content is a nontrivial matter t1521.
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From page 631... ...
Statement to tI7e Institute of Medicine Committee on Children VDI70 Die and Their Families from tI7e Pediatric Special Interest Group, representing tI7e American Academy of Hospice and Palliative Medicine (AAHPM)
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From page 632... ...
and Bruera, E, An international survey of undergraduate medical education in palliative medicine. Journal of Pain and Symptom Management, 2000.
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From page 633... ...
48. Weissman, D, Palliative medicine education: Bridging tI7e gap between acute care and hospice.
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From page 634... ...
and Kinnersley, P TI7e asssessment of communication skills in palliative medicine: A comparison of tI7e scores of examiners and simulated patients.
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From page 635... ...
A randomized controlled study of portfolio learning in undergraduate cancer education. Medical Education, 1998.
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From page 636... ...
Walsh, D, Nelson, K, and Zhukovsky, D, Development of a clinical fellowship program in palliative medicine. Journal of Pain and Symptom Management, 2000.
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From page 637... ...
A hospice/palliative medicine rotation for fellows training in hematology-oncology, 1995.
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