Pediatric Palliative Care 2008

Lynn Meister, MD Vitas Innovative Hospice Care

WHO Definition of Palliative Care

Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, or other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment.

Palliative Care
Affirms life and regards dying as a normal process Neither hastens nor postpones death Provides relief from pain and other distressing symptoms Integrates the psychological and spiritual aspects of patient care Offers a support system to help patients live as actively as possible until death Offers a support system to help the family cope during the patients illness and in their own bereavement

American Academy of Pediatrics Definition of Palliative Care(2000)

Palliative care is a model of caring for patients and their families who suffer from life-threatening illnesses.

Palliative Care
Palliative care is the art and science of child-focused, family-oriented, relationship-centered medical care aimed at enhancing quality of life and attending to suffering. -Himmelstein

Palliative Care
Palliative care strives to relieve pain and other symptoms of suffering, but also focuses on the spiritual, emotional, psychological, social and physical needs of the patient and his family.

Basic Principles of Palliative Care

The child and family are the center of care The goal is to improve quality of life Each child and family is unique Care is delivered by an interdisciplinary team Care is coordinated Team is always available to families

Basic Principles of Palliative Care

Caregiver support is crucial Respite care is essential Bereavement care should be provided for as long as needed

Why Pediatric Hospice?

50,000 infants and children die each year in the United States 500,000 children are living with lifethreatening illnesses 12 million children are living with special health care needs

US Deaths by Cause and Age, 1979-1997

Cause Of Death Number (%) of Deaths <1 year Non-cancer Chronic Condition Cancer Injury Other causes Total 175319 (24.6) 3058 (0.4) 24006 (3.4) 511651 (71.6) 714034 (100) Number (%) of Deaths 1-9 years 43389 (20.0) 24114 (11.2) 100881 (46.5) 48358 (22.3) 216742 (100) Number (%) of Deaths 10-24 years 57286 (7.0) 52108 (6.3) 620790 (75.6) 91360 (11.1) 821544 (100) Number (%) of Deaths Total 275994 (15.8) 79280 (4.5) 745677 (42.5) 651369 (37.2) 1752320 (100)

Feudtner et al. Pediatrics 2001

Physicians (In)Experience with Dying Children

In 1998, the ASCO surveyed 228 pediatric oncologists, to assess the attitudes associated with end-oflife care of children with cancer When asked how they learned to care for dying children, the results revealed a lack of formal training

Physician (In)Experience with Dying Children

Results: Trial and Error From Colleagues in clinical practice From role models during residency/ fellowship Formal courses

92% 82%
65% 10%

Physician (In)Experience with Dying Childen

Physicians reported trial and error to be most useful Half reported anxiety about having to manage difficult symptoms Half reported a feeling of failure at the prospect of a child dying within 6 months The lack of a palliative care team was often reported as a barrier to good care Hilden et al JCO 2001

History of End of Life Care

103 parents of children who died of cancer between 1990 and 1997 at CHB/DFCI were interviewed 89% reported that their children suffered a lot or a great deal in their last month of life Most common symptoms were: 1. Pain 2. Fatigue 3. Dyspnea Conclusion: Greater attention must be paid to palliative care for children who are dying Wolfe, J et al NEJM 2000

Current Status of End of Life Care

Parents of 119 children who died of cancer at CHB/DFCI between 1997-2004 surveyed Hospice discussions occurred more often and earlier DNR orders written earlier Fewer deaths in ICUs or hospitals Parents reported less child suffering from pain and dyspnea Parents felt more prepared for death Conclusion: Children dying of cancer are receiving care that is more consistent with optimal palliative care -Wolfe J et al JCO 2008

Assessment and Planning

Physical concerns- address pain and non-pain symptoms with pharmacological and nonpharmacological treatment plan Psychosocial concerns- discuss fears, coping, communication, previous experiences with death, resources for bereavement Spiritual concerns- review families beliefs Advance Care Planning- identify decision makers, provide information on illness, establish goals of care, make end of life plans Practical concerns- identify healthcare team coordinator, location of care, plan for home/school environment, order medical equipment, address financial concerns

Pain Assessment in Children

Q- Question the child U- Use pain rating scales E- Evaluate behavior and physiological changes S- Secure parents involvement T- Take the cause of pain into account T- Take action and evaluate results

Behavioral Indicators of Pain

Irritability/restlessness Change in sleep patterns Loss of appetite/ change in feeding patterns Inconsolability Variation in crying pattern Repetitive movements (head banging, rocking)

Behavioral Indicators of Pain- 2

Postural changes Favoring of affected limb Immobility Unusual acquiescence

Symptom Management
Pain: Assessment Treatment Non-opioids and opioids Side-effects Barriers Adjuvant Other types of pain Other symptoms

World Health Organization Analgesic Steps

Freedom from cancer pain 3. Strong opioid +/- non opioid +/- adjuvant Persistent Pain 2. Weak opioid +/- non opioid Persistent pain 1. Non-opioid +/- adjuvant Pain +/- adjuvant

Non-opioid Analgesics
Acetominophen 10-15 mg/kg PO/PR every 4-6 hours Ibuprofen 10 mg/kg PO every 6-8 hours Naprosyn 5 mg/kg PO every 12 hour Cox II Inhibitors

Weak Opioids
Codeine 1-1.5 mg/kg PO every 4 hours

Opioids
Long-acting: Methadone (liquid/tabs) MSContin (tabs) Oxycontin (tabs) Fentanyl (tabs/patch/lollypops) Short-acting: Morphine (elixir,tabs,IV,SC) Hydromorphone (tabs) Oxycodone (liquid/tabs) Local Control (pain team)

Principles
Give medications RTC not PRN Try to use PO administration Try to use one drug only maximize dose Reassess pain with every patient contact Escalate dose, not frequency Add breakthrough dose if necessary

Common Opioid Side Effects

Sedation Improves with time Psychostimulant: methylphenidate Nausea Ondansetron Urinary retention Change of opioid, crede, catheter Constipation Docusate/Senna immediately, fluids, bulk Pruritis Antihistamine Sweating Intractable side effects? Consider a change to alternate opioid or rotating opioids Naloxone

Barriers to Effective Pain Management

Fear of addiction Symbolic meaning of morphine drip Dislike of altered consciousness/drowsiness Fear of other side effects- respiratory depression Fear of shortening life Knowledge deficit

Respiratory Depression
Principle of Double Effect Effects that would be morally wrong if caused intentionally are permissible if foreseen but unintended. Does it apply? Risk of respiratory depression is greatest when opioids are first begun- tolerance to the sedative and respiratory depressant effects develop over the first few days Pain acts as antagonist to respiratory depression Proper treatment of pain may actually prolong life (Manfredi NEJM 1998), and contribute to an enhanced quality of life (JAMA, 1995)

Adjuvant Therapies
Guided imagery Hypnosis Acupuncture Accupressure Reike Therapeutic touch Distraction Play therapy Exercise Relaxation techniques/ Breathing exercises Psychological intervention

Other Types of Pain

Neuropathic pain May require massive opioid infusions Rx: Methadone, Gabapentin, tricyclic antidepressants Bone pain Cox II inhibitor corticosteroids bisphosphonates

Other SymptomsNeurodegenerative
Immobility Feeding difficulty Failing speech GE Reflux Incontinence/Constipation Mental decline Seizures Muscle spasm Contractures Pressure sores Managing respiratory secretions Recurrent infections

Malnutrition and Dehydration

The fundamental responsibility of parents is to nourish children- it may be impossible for some to withdraw The goal of nutrition and fluid management should be to alleviate hunger and thirst, to reduce anxiety, to preserve social aspects of meal times Supplemental fluids and nutrition can cause discomfort

Fatigue
Etiology: Disease progression Anemia Malnutrition Sleep disturbance Medication side effects Treat to improve quality of life

Depression and Anxiety

103 parents of children who died of cancer between 1990 and 1997 at CHB/DFCI were asked if their children suffered in their last month of life 53% of the children had little or no fun 29% had significant anxiety 61% had significant sadness 63% were often not calm or peaceful 21% were often afraid We must address these issues Wolfe et al NEJM 2000

Psychosocial Issues
Childrens concepts of death at different ages necessitate different approaches Explaining death to children

Concepts of Life and Death

Infant/toddler: Separation issues-death may be understood as separation from parents, loss of parents comfort. Natural fears about being left alone, strangers, pain. Intervention provide maximum physical comfort through exposure to familiar persons, consistency, favorite toys/objects Pre-school-age child(3-5 years): Separation, autonomy, independence, guilt, concrete and magical thinkingexpansion of death concept to include loss of loving and protective object. Death is a temporary departure, reversible, magical thinking. Intervention minimize separation from parents, correct perceptions of illness as punishment, assuage guilt, use precise language (ex. Not using the word sleep when discussing an impending death)

Concepts of Life and Death- 2

School-age child(6-11years): Appreciation of removal from one kind of physical existence to another. Beginning to understand that death is permanent. Death associated with fear of separation and guilt. Intervention evaluate fears of abandonment, be truthful, provide details if asked, allow child to participate in decision making Adolescent: Independence vs. dependence, sexuality, isolation, anger, withdrawal, body image- Decision making requires honesty, trust and respect. Death is recognized as final, irrevocable act, yet accompanied by disbelief in the possibility of ones personal death. Intervention reinforce self-esteem, give privacy and independence, be truthful, allow him or her to express strong feelings and participate in decision making

Explaining Death to Children

Should parents of children who are terminally ill talk about death with their children? 449 parents who lost a child to cancer in Sweden between 1992 and 1997 were asked this question None of the 147 parents who talked with their child about death regretted it 69 of 258 parents (27%) who did not, regretted not having done so Kreicbergs et al NEJM 2004

Explaining Death to Children

Children are ready and able to talk about things within their own experience Speak in language appropriate to the childs age and maturation level Dont expect a response right way Listen to and observe the child Be available; do not try to cover every issue in one discussion Allow them to talk freely and ask questions

Guidelines based on Lonetto R. Childrens conceptions of death. New York: Springer; 1980

Explaining Death to Children

Most dying children know they are dying They want to protect their parents They fear being forgotten Intervention leave a legacy (scrapbook), put affairs in order They experience fear, loneliness, anxiety Intervention give honest answers, unconditional love and support

Conclusion
The child with a terminal illness, their family, and even their primary care physician will all benefit from the presence of an experienced Pediatric Palliative Care Team.