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Department of Pediatrics

Rotation: Pediatric Advanced Care Team at Texas Children’s Hospital

Master
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Rotation Description

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Texas Children’s Hospital is a 600+ bed free-standing children’s hospital. The Pediatric Advanced Care Team (PACT) at Texas Children’s is the hospital-wide, pediatric palliative care inpatient consult service. PACT provides consults in both the inpatient and outpatient setting and provides daily follow up visits for patients on the inpatient service.

1. The fellow will spend six 4-week block rotations with the Pediatric Advanced Care Team (PACT) inpatient consult service at Texas Children’s. While rotating with PACT, the fellow will spend one afternoon per week seeing ambulatory PACT and one afternoon per week with PACT caring for children with serious illness who are at home.

2. Rotation coordinator: Dr. Jill Ann Jarrell. Contact: jajarrell@texaschildrens.org. Phone: (832) 826-8046.

3. Participate in daily bedside rounds, new patient consultations, and weekly IDT meetings while on inpatient team.

4. Participate in outpatient consultation and follow up visits in various outpatient clinical setting within Texas Children’s.

Clinical experience: Bedside teaching from PACT faculty and interdisciplinary team (IDT) members through inpatient consultation, inpatient follow up, and IDT meeting discussions. Time in ambulatory PACT clinic seeing outpatient palliative care patients and time on PACT participating the care of PACT patients without serious illness who are at home.

Didactic experience: Monthly journal club, monthly core topic didactic lecture from faculty.

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Fellow Responsibilities

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Daytime: Fellows will pre-round and engage in family-centered daily clinical rounds, seeing all patients on the consult service under supervision of program faculty. Through a process of graduated autonomy, fellows will take on more of a leadership role during rounds with each successive rotation.

Call: Overnight home call two weekdays per week and one weekend per month. Weekend calls include daytime rounding as well as overnight home call.

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Evaluation and Feedback

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1. Timely verbal feedback provided by faculty throughout rotation.

2. Structured written evaluation of fellow using American Academy of Hospice and Palliative Medicine evaluation tools at end of rotation.

3. Fellow provides feedback to program director about rotation at end of rotation.

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Goals and Objectives

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Goals and objectives based on Pediatric Hospice and Palliative Medicine Competencies, version 2.0

*** The Pediatric Advanced Care Team is the inpatient and outpatient palliative care consult service at Texas Children’s Hospital. It is the rotation in which fellows spend the largest portion of their fellowship and the goals and objectives are designed to reflect the majority of the core competencies of Pediatric Palliative Care. ***

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Competency 1: Patient and Family Care

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The fellow should demonstrate compassionate, appropriate, and effective care based on existing evidence base in pediatric palliative medicine and aimed at maximizing the well-being and quality of life for patients with chronic, complex, and/or life-threatening conditions and their families. The fellow should provide care in collaboration with other subspecialists and within an interdisciplinary team.

Objectives: At the completion of this rotation, the palliative care fellow will be able to:

1. Obtain a comprehensive history and exam including:

A. Goals of care and advance care planning
B. Detailed symptom history
C. Psychosocial and spiritual history
D. Functional assessment
E. Quality of life assessment
F. Developmental age of the child

2. Formulate a complete care plan utilizing evidence-based palliative medicine and including all members of an interdisciplinary team.

A. Use both pharmacologic and non-pharmacologic pain management interventions.
B. Assess and manage non-pain symptoms including nausea, vomiting, constipation, fatigue, depression, anxiety, dyspnea, delirium, and pruritus.
C. Understand and address the interplay between physical symptoms and psychosocial and spiritual distress.
D. Assess and manage psychosocial and spiritual distress in the patient and family.

3. Apply knowledge to facilitate key events in palliative care including family meetings, goals of care discussions, advance care planning, and discussions surrounding forgoing or discontinuing life-sustaining therapies.

4. Demonstrate ability to respond appropriately to suffering by addressing sources of medical, psychosocial, and spiritual distress, bearing with patient’s and family’s suffering and distress, and remaining a presence, as desired by patient and family.

A. Recognize and seek to support the psychosocial and emotional needs of siblings by utilizing appropriate members of the interdisciplinary team.

5. Construct plans that balance a patient’s level of function and quality of life with concerns for longevity.

6. Demonstrate effective coordination of patient care, both from within an interdisciplinary palliative care team, with other palliative care providers including hospice teams, and in collaboration with colleagues outside of palliative care.

7. Balance a patient’s level of function and quality of life with concerns for longevity for patients and families.

A. Evaluate changes in functional status over time.
B. Evaluate quality of life over time.
C. Demonstrate expertise in maximizing patients’ level of function and quality of life over time.
D. Recognize the potential value of meaning making, creating a sense of legacy, and completing personal goals to patients and their family members.

8. Provide patient, family, caregiver, and staff education.

A. Educate families and caregivers in maintaining and improving level of function to maximize quality of care.
B. Explain palliative care services, recommendations, and latest developments to patients, families, and caregivers.
C. Provide education to various community resources involved in the care of the child and family.

9. Recognize signs/symptoms of impending death, prepare patient and family, and appropriately care for dying patients, including care for family members and involved staff.

A. Prepare family, caregivers, and other healthcare professionals for the patient’s death.
B. Provide appropriate assessment and symptom management for the imminently dying patient.

10. Provide treatment to the bereaved in collaboration with members of interdisciplinary team.

A. Provide support to family members at the time of death and immediately after.
B. Refer family members to bereavement programs.

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Competency 2: Medical Knowledge

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The fellow should demonstrate knowledge about established and evolving biomedical, clinical, population, and social-behavioral sciences relevant to the care of patients with life-threatening conditions and to their families, and relate this knowledge to the hospice and palliative care practice.

Objectives: At the completion of this rotation, the palliative care fellow will be able to:

1. Describe the scope and practice of pediatric palliative care including:

A. Unique features of suffering for patients, families, and care providers in the care of children with life-threatening conditions.
B. Unique features in caring for pediatric patients in regard to physiology, vulnerabilities, development, and decision making.
C. Current standards and best practices of pediatric hospice and palliative medicine.
D. Understanding the cultural biases that affect care of children with life-threatening conditions and their effects on decision making, grief and bereavement, transitions in care, and the risks and benefits of family-centered care.
E. Role of palliative care in co-management of patients with life-threatening conditions in all stages of disease and in balancing and integrating modalities that are restorative, curative, life- prolonging, or palliative and consistent with the patient’s and family’s goals.
F. History and evolution of pediatric hospice and palliative medicine.
G. Settings where hospice and palliative care are provided.
H. Barriers faced by patients and families in accessing hospice and palliative care services.

2. Recognize the role and importance of an interdisciplinary team in pediatric palliative care.

A. Describe the role of the palliative care physician in the interdisciplinary team.
B. Identify the various members of the interdisciplinary team and their roles and responsibilities.
C. Describe concepts of team process and recognizes psychosocial and organizational elements that promote or hinder successful interdisciplinary team function.

3. Describe how to assess and communicate prognosis.

A. Identify which elements of the patient’s history and physical examination are critical to formulating prognosis.
B. Describe common chronic illnesses with prognostic factors, expected natural course, and predictable associated symptoms, trajectories, common treatments, and complications.

4. Recognize and describe the management of pediatric life-threatening conditions including epidemiology, evaluation, prognosis, treatment, and patterns of progression.

A. Identify common diagnostic and treatment methods in the initial evaluation and ongoing management of pediatric life-threatening conditions.
B. Identify signs of advanced disease in pediatric life-threatening conditions.

5. Explain principles of assessing and treating common symptoms.

A. Describe the concept of “total pain,” including the role of the interdisciplinary team in assessing and treating it.
B. Explain the relevant basic science, pathophysiology, associated symptoms and signs, and diagnostic options useful in differentiating etiologies of symptoms.
C. Describe a thorough, developmentally appropriate assessment of symptoms and functional status, including the use of appropriate diagnostic methods and symptom measurement tools.
D. Name common patient, family, healthcare professional, and healthcare system barriers to the effective treatment of symptoms and describes common methods for overcoming these barriers.

6. Describe the pharmacologic treatment of symptoms.

A. List the common agents used to treat pain, dyspnea, nausea, vomiting, diarrhea, constipation, anxiety, depression, fatigue, pruritus, confusion, delirium, agitation, spasticity, seizures, and other common problems in palliative care practice.
B. Describe the indications, clinical pharmacology, alternate routes, monitoring of treatment outcomes, appropriate titration, and common side effects for medications commonly used in symptom management (e.g., opioid and non-opioid analgesics, adjuvant analgesics, and other pharmacologic approaches).
C. Describe appropriate prescribing in different clinical care settings, such as the home, hospital, intensive care unit, long-term care facility, and inpatient hospice.
D. Describe the challenges unique to the use of opioids in symptom management including:

1) Equianalgesic conversions.
2) Concepts of addiction, pseudoaddiction, dependence, tolerance, and withdrawal.
3) Legal and regulatory issues surround opioid prescribing.
4) Common barriers to effective use of opioids (e.g., individual, cultural, conceptual misunderstanding; side effects) and common strategies to overcome these barriers (e.g., family education, clear goals of therapy).

7. Describe the use of procedural, interventional, and non-pharmacologic approaches to the management of symptoms.

A. Identify indications, risks, and appropriate referral for interventional pain management procedures, including surgical procedures, commonly used for symptom management.
B. Identify indications, risks, management of common side effects, and appropriate referral for radiation therapy.
C. Identify indications, risks, and appropriate referral for commonly used complementary and alternative therapies.
D. Explain the role of allied health professions in symptom management.

8. Describe the etiology, pathophysiology, diagnosis, and management of common neuropsychiatric disorders encountered in palliative care practice, such as depression, anxiety, delirium, seizures, and brain injury.

A. Recognize how to evaluate and treat common neuropsychiatric disorders.
B. Describe how to refer appropriately to neurological and mental health professionals.
C. Describe the indications, contraindications, pharmacology, appropriate prescribing practice, and side effects of common psychiatric medications.
D. Recognize the diagnostic criteria and management issues of brain death, persistent vegetative state, and minimally conscious state.

9. Recognize common psychological stressors and disorders experienced by patients and families facing life-threatening conditions, and describes appropriate clinical assessment and management.

A. Recognize psychological distress in patients, families, and care providers.
B. Describe how to provide basic, supportive counseling, and coach families and care providers to maintain important developmentally appropriate supports and to strengthen coping skills.
C. Recognize the needs of parents and siblings of children who are seriously ill or dying and provide appropriate basic counseling or referral.
D. Explain appropriate utilization of consultation with specialists in psychosocial assessment and management.
E. Explain appropriate strategies to support and educate parents and care providers in recognizing psychological distress in children and appropriate ways to support them, including communication, truth telling, supporting coping, and recognizing when to ask for help.
F. Describe typical coping mechanisms and important supports specific to each developmental stage.

10. Recognize common social problems experienced by patients and families facing life-threatening conditions and describes appropriate clinical assessment and management.

A. Assess, counsel, support, and make referrals to alleviate the burden of caregiving.
B. Assess, provide support, and make referrals around fiscal issues, insurance coverage, and legal concerns.

11. Recognize common experiences of distress around spiritual, religious, and existential issues for patients and families facing life-threatening conditions, and describe elements of appropriate clinical assessment and management.

A. Describe the role of hope, despair, and meaning making in the context of life-threatening conditions.
B. Describe the role of development in the patient’s understanding of spirituality and death.
C. Describe how to perform a basic spiritual/existential/religious evaluation.
D. Identify the indications for referral to spiritual care providers or other spiritual counselors and resources.
E. Know the developmental processes, tasks, and variations of meaning making for patients at the end of life and their families.

12. Recognize, evaluate, and support diverse cultural values and customs with regard to information sharing, decision making, expression and treatment of physical and emotional distress, and preferences for sites of care and death.

13. Recognize the components of appropriate management for the syndrome of imminent death.

A. Identify common symptoms, signs, complications, and variations in the normal dying process and their management.
B. Describe strategies to communicate with the patient and family about the dying process and provide support.

14. Recognize the elements of appropriate care of the patient and family at the time of death and immediately thereafter.

A. Describe appropriate and sensitive pronouncement of death.
B. Identify the standard procedural components and psychosocial elements of post-death care.
C. Recognize the potential importance and existence of post-death rituals and how to facilitate them.
D. Recognize benefits and challenges posed by a death in different care settings (e.g., hospital, home) and describe resources and strategies to address them.

15. Describe the basic science, epidemiology, clinical features, natural course, and management options for normal and pathologic grief.

A. Demonstrate knowledge of typical grief patterns and elements of bereavement follow-up, including assessment, treatment, and referral options for bereaved family members.
B. Recognize, differentiate, and describe strategies to address grief and bereavement, including the unique features associated with the loss of a child, the role of anticipatory grief in medical decision making, and factors that facilitate and benefit the grieving process prior to and following the death of a child.

16. Describe ethical and legal issues in palliative and end-of-life care and their clinical management.

A. Discuss ethical principles and frameworks for addressing clinical issues.
B. Describe federal, state, and local laws and practices that impact palliative care practice.
C. Describe professional and institutional ethical policies relevant to palliative care practice.

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Competency 3: Practice-Based Learning and Improvement

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The fellow should be able to investigate, evaluate, and continuously improve personal practices in caring for patients and families and appraise and assimilate scientific evidence relative to palliative care.

Objectives: At the completion of this rotation, the palliative care fellow will be able to:

1. Maintain a safe and competent practice, including self-evaluation and continuous learning.

A. Demonstrate an ability to reflect on personal learning strengths, deficiencies, and limits and develop a plan for improvement.
B. Demonstrate knowledge of and commitment to continuing professional development and lifelong learning.
C. Demonstrate the ability to reflect on his or her personal learning style and use different opportunities for learning.
D. Demonstrate the ability to actively seek and use feedback.

2. Access, analyze, and apply the evidence base to clinical practice in palliative care.

A. Demonstrate knowledge of and recognize limitations of evidence-based medicine in palliative care.
B. Actively seek to apply the best available evidence to patient care to facilitate safe, up-to-date clinical practice and encourage others to do so.

3. Develop competencies as an educator.

A. Recognize the importance of assessing learning needs in initiating a teaching encounter.
B. Reflect on the benefits and drawbacks of alternative approaches to teaching and the role of different teaching techniques to address skills, knowledge, and attitudes.
C. Show respect toward learners and teachers, including children and families.
D. Demonstrate the ability to supervise clinical trainees (e.g., medical students, residents, other healthcare professionals) and effectively give constructive feedback.

4. Demonstrate knowledge of the process, benefits, challenges, and opportunities for scholarly activity and research in palliative care.

A. Recognize and value the importance of addressing ethical issues in palliative care research.
B. Support and participate in scholarly activity and research as appropriate to the setting.

5. Describe common approaches to quality and safety assurance.

A. Demonstrate an ability to evaluate, design, and implement quality and safety improvement and assurance measures.
B. Demonstrate knowledge of palliative care’s clinical, financial, and quality-of-care outcome measures.
C. Demonstrate an awareness of and adherence to patient safety standards.

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Competency 4: Interpersonal and Communication Skills

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The fellow should be able to demonstrate interpersonal and communication skills that result in effective relationship building, information exchange, emotional support, shared decision making, and collaboration with patients, patients’ families, and professional associates.

Objectives: At the completion of this rotation, the palliative care fellow will be able to:

1. Initiate informed, relationship-centered dialogues about care.

A. Assess patient and family wishes regarding the amount of information they wish to receive and the extent to which they want and are able to participate in clinical decision-making.
B. Assess the developmental level and cognitive understanding of the patient and appropriately include the patient in medical discussions and decision making.
C. Assess patients’ and family members’ decision-making capacity.
D. Assess patients’ and family members’ strengths and limitations of understanding and communication.

2. Demonstrate empathy.

A. Use empathic and facilitating verbal behaviors, such as naming, affirmation, normalization, reflection, silence, listening, self-disclosure, and humor in an effective, age-appropriate, and culturally appropriate manner.
B. Employ empathic and facilitating nonverbal behaviors such as touch, eye contact, open posture, and eye-level approach in an effective, age-appropriate, and culturally appropriate manner.
C. Allow for appropriate emotional expression from patients, families, care teams, and oneself.

3. Demonstrate the ability to effectively recognize and respond to one’s own emotions and those of others.

A. Express awareness of one’s own emotional state before, during, and after patient and family encounters.
B. Process one’s own emotions in a clinical setting in order to focus on the needs of the patient and family.
C. Respond to requests to participate in spiritual or religious activities and rituals, in a matter that preserves respect for both the patient and family, as well as one’s own integrity and personal and professional boundaries.
D. Identify and correct one’s own communication miscues.
E. Respond effectively to intense emotions of patients, families, and colleagues.

4. Demonstrate the ability to educate patients and families about the medical, social, and psychological issues associated with pediatric life-threatening conditions.

A. Demonstrate self-awareness and an ability to recognize differences between the clinician’s own and the patient’s and family’s values, attitudes, assumptions, hopes, and fears related to illness, dying, and grief.
B. Communicate new knowledge to patients and families, adjusting language and complexity of concepts based on the families’ level of sophistication, understanding, and values, as well as on the developmental stage and cognitive ability of the patient.
C. Recognize ambivalence about care options and treatments and exhibits appropriate strategies to address it.

5. Assess and use age-, gender-, and culturally appropriate concepts and language when communicating with patients and families.

A. Routinely assess patients and families to identify individuals who might benefit from age-, gender-, and culturally appropriate interventions or support.
B. Appreciate the need to adjust communication strategies to honor different cultural beliefs.
C. Avoid euphemisms in explaining medical issues.

6. Demonstrate the above skills in the following paradigmatic situations with patients or families and documents a comprehensive, informative, sensitive note in the medical record: breaking bad news, discussing balance of interventions ranging from curative to palliative, discussing goals of care, discussing the needs of dying patient with parents, pronouncing death in the presence of a patient’s family, and other typical palliative care situations.

7. Organize and lead or co-facilitate a family meeting.

8. Collaborate effectively with others as member or leader of an interdisciplinary team.

A. Facilitate efficient team meetings.
B. Accept and solicit insights from interdisciplinary team members regarding patient and family needs in developing a comprehensive plan of care.
C. Accept and effectively incorporate feedback from team members.

9. Collaborate and develop effective relationships with referring physicians, consultant physicians, and other healthcare providers.

A. Provide a concise verbal history and physical exam presentation for a new palliative care patient.
B. Summarize the active palliative care issues and treatment recommendations for a known patient in signing out to or updating a colleague.
C. Communicate with referring and consultant clinicians about the care plan and recommendations for the patient and family.
D. Work toward consensus building about treatment plans and goals of care.
E. Support and empower colleagues to lead and participate in family meetings.

10. Maintain comprehensive, timely, and legible medical records.

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Competency 5: Professionalism

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The fellow should be able to demonstrate a commitment to carrying out professional responsibilities, awareness of his or her role in reducing suffering and enhancing quality of life, adherence to ethical principles, sensitivity to a diverse patient population, and appropriate self-reflection.

Objectives: At the completion of this rotation, the palliative care fellow will be able to:

1. Achieve balance among the needs of patients, families, and team members while balancing one’s own needs for self-care.

A. Recognize the signs of fatigue, compassion fatigue, burnout, and personal distress in self and colleagues.
B. Describe effective strategies for self-care, including balance; emotional support; and dealing with fatigue, compassion fatigue, burnout, and personal loss and distress.
C. Contribute to team wellness.
D. Explain how to set appropriate boundaries with colleagues, patients, and families.

2. Recognize one’s own role and the role of the system in disclosure and prevention of medical error.

A. Assess personal behavior and accept responsibility for errors when appropriate.
B. Disclose medical errors in accordance with institutional policies and professional ethics.

3. Demonstrate accountability to patients, society, and the profession and a commitment to excellence.

A. Recognize one’s own professional responsibility to reduce suffering and enhance quality of life.
B. Communicate the mission of palliative care to hospital administrators, clinicians, and the community.

4. Describe the professional role and responsibility of a palliative care physician and hospice medical director in terms of quality of care, compliance, and communication with other professionals.

5. Fulfill professional commitments.

A. Respond in a timely manner to requests from patients and families.
B. Respond in a timely manner to requests for help from colleagues.
C. Ask for help from colleagues.
D. Demonstrate accountability for personal actions and plans.
E. Treat coworkers with respect, dignity, and compassion.

6. Demonstrate knowledge of ethics and law that should guide the care of patients, including special considerations around these issues across the age spectrum, including: informed consent and assent, medical futility, physician-assisted suicide, indications for ethics consultation, confidentiality, truth telling, disclosure, decision making, surrogacy, decision-making capacity, conflict of interest, use of medical hydration and nutrition, euthanasia, research ethics, nurse/physician collaboration, principle of double effect, and organ donation.

7. Demonstrate respect and compassion toward all patients and their families as well as toward other clinicians.

8. Demonstrate the capacity to reflect on personal attitudes, values, strengths, vulnerabilities, and experiences to optimize personal wellness and capacity to meet the needs of patients and families.

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Competency 6: Systems-Based Practice

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The fellow should be able to demonstrate an awareness of and responsiveness to the larger context and system of health care, including hospice and other community- based services for patients and families, and the ability to effectively call on system resources to provide high-quality care.

Objectives: At the completion of this rotation, the palliative care fellow will be able to:

1. Demonstrate care that is cost-effective and represents best practices.

A. Recognize relative costs of medications and other therapeutics.
B. Implement best evidence-based practices.
C. Identify similarities and differences among reimbursements for palliative medicine, hospice, hospital, home health, and long-term care.
D. Describe basic concepts and patterns of physician billing, coding, and reimbursement across settings.
E. Recognize the need to balance home nursing and hospice services for children with special healthcare needs.

2. Evaluate and implement systems improvements based on clinical practice or patient and family satisfaction data, in personal practice, in team practice, and within institutional settings.

3. Integrate knowledge of the healthcare system in developing plans of care.

A. Describe the policies and procedures of pertinent healthcare systems.
B. Describe the philosophy, admissions criteria, range of services, and structure of hospice care, including up-to-date federal and state provisions for care, such as concurrent care.
C. Recognize resources and barriers relevant to the care of specialized populations in hospice and palliative medicine and demonstrate basic knowledge of how to mobilize appropriate support for these populations.

4. Demonstrate knowledge of the various settings and related structures for organizing, regulating, and financing care for patients with palliative care needs.

A. Describe differences in admission criteria for various settings, such as hospitals, palliative care units, skilled-nursing and assisted-living facilities, acute/subacute rehabilitation facilities, and long-term acute care settings, as well as traditional home hospice.
B. Describe the models for financing hospice and palliative resources for children, including state Medicaid waiver programs, federal Title 5 programs, and charity care.

5. Collaborate with all elements of the palliative care continuum, including hospitals, palliative care units, nursing homes, long-term care facilities, home and inpatient hospice, schools, and other community resources.

A. Utilize members of the interdisciplinary team to create smooth and efficient transitions across healthcare settings for patients and families.
B. Communicate with healthcare providers at the time of care transitions to clarify and coordinate the care plan across settings.

6. Advocate for quality patient and family care and assists patients and families in dealing with system complexities.

A. Communicate and support patient and family decision-making about discharge planning, including settings of care, service options, and reimbursement and payer systems.
B. Identify targets for advocacy (organizational, governmental, and nongovernmental) to improve the lives of children and families who can benefit from palliative care.

7. Partner with healthcare managers and healthcare providers to assess, coordinate, and improve patient safety and health care and understand how these activities can affect system performance.