Pediatric Palliative Care

Slide 1:Pediatric Palliative Care

Patty Wu, MD

Slide 2:Objectives

What is palliative care? Challenges How can palliative care help? Symptom management, Hospital/Home care, Psychosocial support, Bereavement Hospice Summary

Slide 3:Pediatric Palliative Care

Over 500,000 children suffer from life-threatening conditions Over 50,000 children die each year in the United States alone Approximately 10,000 children a year die from complex chronic conditions Rate of hospitalization increases steadily as death grows near 2 fold rise in last 2 months of life 4 fold rise in last month of life Today, less than one percent of children needing hospice care in the United States receive it

Slide 4:History

Pediatric Palliative Care is still at an early stage

Slide 5:History

American Board of Subspecialty Exam October 2008 1455 Physicians Internal Medicine- 892 Family Practice- 400 Pediatrics � 52 Psych/ Neurology- 30 Anesthesia- 22 Radiology- 17 Emergency medicine- 12 Surgery- 12 Obstetrics- 9 Physical Medicine/ Rehabilitation- 9

Slide 6:History

Pediatric Palliative Medicine Fellowship Akron Children�s Hospital- 1 fellow Children�s Hospital of Boston- 1-2 fellows Children�s Hospital of Philadelphia- 1 fellow

Slide 7:What is Palliative Care?

Palliative care seeks: to prevent or relieve physical, social, emotional and spiritual suffering produced by a life threatening medical condition or its treatment to help patients with such conditions and their families live as normally as possible to provide them with timely and accurate information and support in decision making

Slide 8:Palliative Care

IS Evidence based medical treatment Vigorous care of pain and symptoms through illness Care that patients may want at the same time as treatment to cure or prolong life NOT �giving up� �accelerating death� �in place of� curative or life-prolonging care the same as hospice

Slide 9:Palliative Care

AAP �integrated model in which the components of palliative care are offered at diagnosis and continued throughout the course of illness� whether the outcome ends in cure or death �The goal is to add life to the child�s years, not simply years to the child�s life�

Slide 10:Palliative Care

Palliative Medicine Hospice

Slide 11:Palliative Care Model

Old- Abrupt transition to hospice Disease Modifying Therapy Palliative Therapy Prolongation of life Relief of Suffering DIAGNOSIS DEATH

Slide 12:Palliative Care Model

Optimal- Continuum of care Disease Modifying Therapy Palliative Therapy Presentation Acute Illness Chronic End of Life Care Death Bereavement

Slide 13:Challenges

Patient/ Child Not legally competent Lacks verbal skills to describe needs, feelings, etc. Not achieved a "full and complete life� Family Difficulty understanding treatment plans, prognosis, etc. Needs relief from burden of care Stress on finances Difficulty with siblings

Slide 14:Challenges

Caregivers sense of �failure� lack familiarity with dosages and medications for symptom management lack experience in caring for dying patients difficulty of prognostication for children with complex problems

Slide 15:Palliative Care

Relief of physical, social, emotional and spiritual suffering for the child and family �and caregivers

Slide 16:Palliative Care

TEAMWORK!

Slide 17:Palliative Care

Interdisciplinary Care Patient and Family Physician Nursing Staff Social worker Chaplain Bereavement Counselors Home Health Aides Volunteers PT, OT, Speech Therapy Complementary Therapy Music Therapy, Art Therapy, Pet Therapy

Slide 18:How Can Palliative Care Help

Symptom Management Hospital Care Home Care Psychosocial Support Bereavement

Slide 19:Symptom Management

60% of parents reported children suffered from pain (only 20% felt pain was adequately treated) Pharmacologic and non-pharmacologic management Pain Dyspnea Nausea/ Vomiting Sialorrhea Constipation

Slide 20:Symptom management

Slide 21:Symptom Management-Pain

Definition: an unpleasant sensation associated with actual or potential tissue damage and mediated by specific nerve fibers to the brain where its conscious appreciation may be modified by various factors�or�whatever the child or parent says it is! Encompasses physical, emotional, spiritual, cultural, socioeconomic components

Slide 22:Symptom Management- Pain

Assessment Basics: character, pattern, severity, better/ worse, location �It just hurts!� Behavioral Changes: change in activity/ appetite/ bowel habits, facial expression, refusal to move, clinging/ whining Parent/ Caregiver report Pain Scales: FACES, FLACC, Numbers ** Most comes from medical and therapeutic procedures ** Acute versus Chronic pain, Nociceptive vs. Neuropathic ** Follow trends

Slide 23:Symptom Management- Pain

Misconceptions Addiction: impaired control over drug use, continues/ compulsive use despite harm Pseudoaddiciton: induced inadvertently when healthcare professionals provide less than adequate pain relief Physical Dependence: withdrawal symptoms occur if medication stopped abruptly (prevent with slow taper over 10 days) Tolerance: need to increase amount of drug to produce the same analgesic effect (r/o progression of disease, new disease, injury) Respiratory Depression: rare in monotherapy, analgesia dose is lower than dose needed for respiratory depression, tolerance develops, preceded by somnolence Labels and biases: �good kid�, pain means more tests or back to the hospital, protect parents Cultural differences

Slide 24:Symptom Management- Pain

Treatment Schedule ATC with breakthrough Type: chronic versus acute versus incident pain Assess and reassess Bowel regimen Multimodal- Non-pharmacologic vs. Pharmacologic vs. Intervention

Slide 25:Symptom Management- Pain

Nonpharmacologic Relaxation: imagery, meditation, biofeedback, hypnosis Distraction, control, choices Body work: massage, healing touch, acupuncture Expressive therapy: art, dance/ movement, play, music Heat/ cold Spiritual care

Slide 26:Symptom Management- Pain

Pharmocologic Opioids WHO 3-step ladder Avoid Demerol (toxic metabolite causes seizures) Avoid Codeine (prodrug, needs CP450 to metabolize to morphine, 10-30% of population are slow metabolizers) Avoid transdermal Fentanyl until stable dosing Vicodin, Percocet, etc- Acetaminophen limiting dose Adjuvants NSAIDS, neuroleptics, corticosteroids, antidepressants, anticonvulsants, etc. Intervention Radiation, regional anesthesia, neurosurgical approaches

Slide 27:Symptom Management

Slide 28:Symptom Management- Nausea

Metastases Meningeal Irritation Movement Mentation (anxiety) Medications Mucosal Irritation Mechanical Obstruction Motility Metabolic Microbes Myocardial Maternity

Slide 29:Symptom Management- Nausea

Cortex ** Peripheral Pathways 5HT3, Mechano/Chemo receptors Sensory input, anxiety, meningeal irritation, increased ICP Mechanical stretch, mucosal injury, Local toxins, drugs VOMITING CENTER NAUSEA/ EMESIS

Slide 30:Symptom Management-Nausea

Central Action Dexamethasone, Lorazepam, THC Dopamine Antagonists Haloperidol, Metaclopramide, Prochlorperazine, Promethazine Acetylcholine Antagonists Scopalamine Serotonin Antagonists Odansetron, Granisetron, Dolasetron, Palonosetron Histamine Antagonists Diphenhydraminw, Meclizine, Hydroxyzine Inoperable Obstruction Octreotide

Slide 31:Symptom Management-Nausea

Nonpharmacologic Interventions Antiemetic Formula

Slide 32:Symptom Management-Nausea

Determine likely cause/ causes Conceptualize neurotransmitters involved Select agent based on mechanism of action (avoid overlap, dopamine antagonists**) Titrate to effect Combine agents from different classes Be aggressive

Slide 33:Subcutaneous Access

First used in pediatric medicine in 1940s Commonplace in geriatric medicine until 1950s Improper use and poor technique led to fall from favor

Slide 34:Subcutaneous Access

Technique Butterfly needle 21-25G Sites: abdomen, thigh, scapula, axillary, sub-clavicular chest (change every 1 to 4 days) Hyaluronidase

Slide 35:Subcutaneous Access

Intramuscular injections into the buttocks: Are they truly intramuscular European Journal of Radiology 2006 Prospective study in 6 month period October 2004, 32% patients IM, 68% patients SC Thick subcutaneous fat, female sex, high male body mass index

Slide 36:Subcutaneous Access

Contraindications Not used for rapid, large volume infusions Clotting disorders Advantages Low cost More comfortable, simple insertion, less distressing More suitable for home care (less staff supervision) Does not cause thrombophlebitis Disadvantages Usual rate 1 ml per minute, maximum 3 L in 24 hours Local edema at infusion site, possible local reactions

Slide 37:Hospital Care

Many families report communication regarding treatment and prognosis are confusing, inadequate or uncaring Identify decision makers Establish Goals of care Delivering bad news Buckman Protocol Illness trajectory Anticipatory guidance Frequent reevaluation

Slide 38:Decision Making

Children until age 18 are not considered competent (unless emancipated minors) Parents have decision-making rights for minor children unless rights are removed What is best for the patient may not be what is best for the family�what is the priority? Life expectancy/ years of life lost in children is greater�may be reasonable to be more aggressive

Slide 39:Decision Making

Standard Hierarchy Autonomy Right to bodily integrity Presumes competence Substituted Judgment (�What would Mary do?�) Presumes incompetence Surrogate decision-maker applies known or suspected preferences of patient Best Interest (�What should we do for Mary?�) Standard for children Subjective (parents versus medical team) Applies concept of proportionality, weighs burdens/ benefits

Slide 40:Ethics

Autonomy: Self-determination Patient- consider care �through the child�s eyes� Parent- help parents respect wishes of minor children Beneficience: Do Good Patient- relieve child�s suffering, symptoms Parent- help parents feel that they have done best for their child Non-maleficence: Avoid harm Patient- forgo life sustaining treatment if burden outweighs benefits Parent- help parents avoid choices they will later regret Justice: Treat patients equally Patient- provide care regardless of ability to pay Parent- respect family values, avoid judgment

Slide 41:Baby Doe Rules

Federal Child Abuse Prevention and Treatment Act Amendments of 1984 Baby Doe Rules: mandate states receiving federal funds for child abuse programs to develop procedures to report alleged incidents of withholding medically-indicated treatment for children <1 year Treatment can be withheld if: Patient is permanently comatose Any treatment would merely prolong death Treatment would not be effective

Slide 42:Baby Doe Rules

Do NOT mandate federal interference in ethical decision-making Do NOT impose penalties (criminal or civil) Do NOT prohibit mutual decision-making Decisions should still be based on best interest standard Decisions should be made between parents/ surrogate and health care team functioning as advocates

Slide 43:Goals of Care

What are the patient and family priorities? What do they hope for? Symptom management versus work-up? Where do they want the care to take place? Escalation of care? Antibiotics? IVs? Artificial nutrition/ hydration? Code status** End of life management? Rituals? Religion? Decision makers?

Slide 44:Buckman Protocol

1. Establish the Setting 2. Perception- What do they know? 3. Invitation- What/ How much do they want to know? 4. Present the Information- Warning shot 5. Allow Response 6. Establish time to follow up

Slide 45:Anticipatory Guidance

Prognosis- give range Reassurance- fears of abandonment, concerns for suffering Symptoms at EOL Allow family, cultural or religious rituals Final arrangements Siblings

Slide 46:Home Care

Children grieve loss of function and interaction with peers/ school absences Isolation for patient and family Access to physicians, medications and equipment at home Children should be urged to attend classes and maintain a routine

Slide 47:Bereavement

Grief is a lifelong process Bereavement for family, friends, and staff

Slide 48:When to Ask for Consult

Pain and other symptoms not responding to standard treatment Clarification of goals and limits of therapy End of life decision making Support of critically ill child�s family Support of staff Bereavement

Slide 50:Hospice Reimbursement

Nick Snow Children�s Hospice and Palliative Care Act of 2006/ Assembly Bill 1745 Waiver to federal government allowing children with life limiting/ threatening conditions to receive concurrent curative and palliative care 21 years or younger Includes Medical Hospice Benefit services Provided at same time as curative treatment available (but not duplicative) Provided to individuals whose conditions may result in death regardless of estimated length of remaining time

Slide 51:Children�s Team MD RN SW Spiritual Counselor Pharmacist

Slide 52:Summary

The focus of palliative care is the comfort and well being of the child and family

Slide 53:Summary

Principles of Pediatric Palliative Care Palliative care programs should be available to children who have life-threatening diseases, not just in those in whom death is imminent Care should be available to children at home or in the hospital The unit of care is the child and family The focus of care is to relieve physical, emotional, and spiritual suffering Interdisciplinary palliative care teams should be available for the child 24 hours a day Bereavement care should be available for families of children who die