palliative care for children

PEDIATRIC PALLIATIVE CARE

DR. LIZA C. MANALO, M.Sc.

PALLIATIVE CARE

Philippines

PHYSICAL SYMPTOMS

PSYCHOLOGICAL SYMPTOMS

SOCIAL NEEDSEXISTENTIAL OR

SPIRITUAL NEEDS

PALLIATIVE CARE

FOUR DOMAINS

DOMAINS OF QUALITY PALLIATIVE CARE

Domain 1: Structure and Processes of Care

Domain 2: Physical Aspects of Care

Domain 3: Psychological and Psychiatric Aspects of Care

Domain 4: Social Aspects of Care

Domain 5: Spiritual, Religious and Existential Aspects of Care

Domain 6: Cultural Aspects of Care

Domain 7: Care of the Imminently Dying Patient


Domain 2: Physical Aspects of Care

Symptom Control

PAIN or DYSPNEA

WHO 3-step Analgesic Ladder Step 1: Non-opioids Step 2: Weak OpioidsStep 3: Strong Opioids

Morphine

Neonates (<1 month) : 500microgram/kg/24hr 4 hrly divided doses

Infants: <1 yr = 500microgram/kg/24hr 4 hrly divided doses

1 – 2 yrs=1mg/kg/24hr 4 hrly divided doses

Children: 2-12yrs=1mg/kg/24hr 4 hrly divided doses

>12 yrs=30mg/24hr 4 hrly divided doses

orally, SL, PR, round the clock- Himelstein et al, N. Engl. J. Med, 2004

http://fohs.bgu.ac.il/inpact/images/Documents/commondrugs.pdf

Opioids for Palliation of Dyspnea The exact mechanism is unclear. The drugs' cardiovascular effects are thought to be most likely

responsible for relieving dyspnea.

Therapeutic doses of opioids:

produce peripheral vasodilation

reduce peripheral vascular resistance

inhibit baro receptor responses

decrease brainstem responsiveness to carbon dioxide (the primary mechanism of opioid induced respiratory depression)

lessen the reflex vasoconstriction caused by increased blood PCO2 levels so that the perception of dyspnea is reduced

Furthermore, opioids reduce the anxiety associated with dyspnea.

CONSTIPATION Due to use of opioids

MAINSTAYS OF THERAPY

Stimulant (e.g. senna syrup) Bisacodyl: 1 mo. – 2 yr 5 mg as single daily dose, oral or PR

2-12 yrs = 5 mg as single daily dose , oral or PR>12 yrs=10 mg as single daily dose , oral or PR

Osmotic Laxatives Lactulose: 1 mo. – 1 yr =2.5 ml/24 hr 12 hrly divided doses

1-2 yrs= 5 ml/24 hr 12 hrly divided doses 2-5 yrs = 5 ml/24 hr 12- hrly divided doses 5-12 yrs = 10 ml/24 hr 12- hrly divided doses >12 yrs = 20 ml/24 hr 12- hrly divided doses

- Himelstein et al, N. Engl. J. Med, 2004


NAUSEA

Prochlorperazine - 0.1 to 0.15 mg/KBW orally or PR q6-8h

Ondansetron

for children 2-12 yrs: 0.15 mg/KBW orally or

IV q6-8h PRN



AGITATION

Lorazepam

Midazolam (SC)

Children (1 mo - 12 yrs): 150 microgram/kg as a single loading dose; 1 mg/kg/24 hr continuous SC infusion

Haloperidol (oral, SC)

Children (1 mo – 12 yrs) 25 microgram /kg/ 24 hr

12- hrly divided doses

>12 yrs = 1 mg as single daily dose - Himelstein et al, N. Engl. J. Med, 2004


Pruritus

Diphenhydramine

Children 2-12 yrs: 5 mg/kg/day divided q4-6h

IV/PO



Seizures

Diazepam Infants (1 mo – 2 yrs): 200 microgram/kg/24hr, 12 hrly divided dose, oral

400 microgram/kg, IV, titratedChildren 2-12 yrs = 1mg/24 once daily, oral

>12yrs=3-5mg /24hr once daily, oral

2-12 yrs= 400 microgram/kg IV, titrated >12 yrs=5-10 mg IV, titrated

Maximum 10 mg as a single dose. Repeat after 5-10 mins if necessary.



Secretions

Hyoscine butyl bromide (SC)

Infant (1 mo – 2 yrs): 1.5 mg/kg/24 hr

Children 2-5 yrs=15 mg/24 hr

6-12 yrs = 30 mg/24 hr

q6h- q8h divided doses or as

continuous SC infusion



Domain 5: Spiritual, Religious and Existential

Aspects of Care

DEVELOPMENT OF DEATH CONCEPTS & SPIRITUALITY IN CHILDREN

>6-12 years old

Characteristics: Has concrete thoughts

Predominant concepts of death: Development of adult concepts of death

Understands that death can be personal

Interested in physiology and details of death

Spiritual Development Faith concerns right and wrong

May accept external interpretations as the truth

Connects ritual with personal identity

Himelstein et al, N. Engl. J. Med, 2004

Domain 5: Spiritual, Religious and Existential

Aspects of Care

DEVELOPMENT OF DEATH CONCEPTS & SPIRITUALITY IN CHILDREN

>6-12 years old

Interventions: Evaluate child’s fear of abandonment

Be truthful

Provide concrete details if requested

Support child’s efforts to achieve control and mastery

Maintain access to peers

Allow child to participate in decision-making


Realities of Childhood Grief

Dying children know they are dying; adult denial is ineffective in the face of children’s emotional perceptiveness

Dying children experience fear, loneliness, & anxiety

Dying children worry, may try to put their affairs in order, may strive to protect their parents, & fear being forgotten

Dying children need honest answers and unconditional love and support


COMMUNICATION

Communication skills Appropriate and effective sharing of information, active

listening

Empathic and effective communication skills are essential

Organized and effective procedure for communicating bad news with 6 steps goes by the acronym SPIKES

SPIKES Protocol for Breaking the Bad News

Setting

Perception of the patient and/or family: Find out how

much the patient and/or family knows

Invitation: Find out how much the patient wants to know

Knowledge: Share the information

Empathy

Strategy/Summary

- Buckman RA, Community Oncology

March/April 2005

Advance Care Planning

Part of the standard of care involved in the care of patients with life-threatening conditions

It is our responsibility to initiate these discussions, rather than wait for patients and family members to ask.

These discussions should occur early and regularly throughout the course of treatment, ideally before crises arise, and as the goals of care are clarified or change over time. Decisions should be reviewed and revised on a regular basis as the medical condition and knowledge of treatment and prognosis evolve.

Advance Care Planning

Clarification of wishes regarding emergency and life-sustaining therapies including CPR vs. DNR should be obtained and documented so that these advance directives can be communicated with others, such as home care workers and schools.

Paediatric palliative care professionals should be involved early in discussions of treatment goals. Discussions about palliative care should take place well before the paediatric patient is at imminent risk of dying.

Any life-sustaining treatment…

Resuscitation (CPR)

Elective intubation, mechanical ventilation

Surgery

Dialysis, Hemofiltration

Blood transfusions, blood products

Diagnostic tests

Artificial nutrition, (parenteral or enteral) or hydration (IVF)

Antibiotics

Vasopressors

Future hospital, ICU admissions

…aimed at maintaining organ function that only

prolong death may be withdrawn or withheld

POPE JOHN PAUL II :Clarify the substantive moral difference between

Discontinuing medical procedures that may be burdensome, dangerous, or disproportionate to the expected outcome

> "the refusal of 'over-zealous' treatment"

Taking away the proportionatemeans of preserving life, such as ordinary feeding, hydration, and

normal medical care

Communication

Site of care

Resuscitation

Nutrition and fluids

Cessation of oral medications

Adequacy of analgesia

Management of distress & unrelieved symptoms

Noisy breathing

Care issues

Duties after patient death


Domain 7: Care of the Imminently Dying Patient

Overview of Care of Patients Imminently Dying

from Advanced Cancers

Learn to enjoy small accomplishments, and

teach that skill to patients and their families.

It is not always possible to eradicate every

symptom, but it is usually possible to bring some

degree of relief.

“There is nothing more that can be done” does not exist

in the lexicon of palliative medicine

There is always something that can be done, even if it is simply to sit beside the patient and hold her hand and offer a few words of comfort and solidarity.

Recognition: “DIAGNOSIS OF DYING”

Signs & Symptoms of Death Approaching

Profound tiredness and weakness

Reduced intake of food & fluids

Drowsy or reduced cognition

Gaunt appearance

Difficulty swallowing oral medication

Essentially bed bound

Reduced interest in getting out of bed

Needing assistance with all care

Less interest in things happening around them

May be disoriented in time and place

Difficulty concentrating

Scarcely able to cooperate and converse with carers

Guidelines for managing the last days of life in adults. 2006. The National Council for Hospices and

Specialist Palliative Care Services, London

Care During the Last Days and Hours of Life

Patients in the last days of life typically experience extreme weakness and fatigue and become bedbound

“Death Rattle“ – noisy terminal respirations caused by the presence of secretions in the airway (usually the upper airway) in patients who are too weak to cough effectively

Hearing and touch

Care During the Last Days and Hours of Life

Patient decides whether to be cared for and to die in the hospital, or at home

cardinal signs of death should be instructed to caregivers

Physician should establish a plan for who the family orcaregivers will contact when the patient is dying or has died

Avoiding unnecessary admission

Care of the Imminently Dying Patient:

Medications

Oral medications that are no longer necessary (e.g., laxatives, antibiotics) should be stopped.

Medications that are needed to control ongoing symptoms (e.g., pain, nausea, seizures) should be given rectally or parenterally .

When patients become anuric close to death, continuous dosing may be discontinued in favor of bolus dosing to prevent metabolite accumulation and agitated delirium. - Weinstein, Arnold & Weissman, Fast Fact and

Concept #54: Opioid Infusions (www.eperc.mcw.edu)


Nutrition & Hydration

During the last days of life, patients tend naturally to take in less and less food and fluid.

Hunger is rare in the last days of life.

Thirst occurs more commonly, but without relation to dehydration, and can usually be controlled by simple measures (e.g., moistening the lips, giving small sips of fluids or small amounts of crushed ice to suck).

Enteral feeding should be stopped when the patient can no longer swallow reliably.


Hydration

In most cases, parenteral (IV) fluids should not be given in the last hours of life.

Allowing the patient to become slightly dehydrated may prevent or ameliorate many otherwise distressing problems in the last hours:

Consequence of IV Hydration Symptoms

↑ Respiratory secretions Cough

Pulmonary congestion

Sensations of choking & drowning

↑ Urine Output Bedwetting, bedpans, catheters

↑ Gastrointestinal secretions Vomiting

↑ Total body water ↑ Edema, ascites, pleural effusions

↓ Serum urea ↑ Awareness ↑Distress, ↓Pain threshold

Psychosocial Support of the Patient and the

Family

In addition to anxiolytics, supportive counseling, spiritual counseling, and family support can help counter feelings of anxiety

At the moment of the patient’s death: shock and loss and be emotionally distraught

assimilate the event and be comforted

Support of the Patient &

His Family During the Agonal Period

The nearer the patient approaches death, the more he reaches out towards life…

Touch is often important, sitting close to him, holding his hand, staying near him even without words…

All of these things make the chasm between the living and the dead less terrifying and lonely...

- Hackett & Weisman, 1962

1) To see the patient & the family through

- the physical & emotional stages of terminal illness

2) To ease their burden along the way

- to walk alongside, not to give orders from above

3) To be there

- when symptoms arise, when hard questions have - to be faced, when fear & loneliness threaten

TASKS OF THE MULTIDISCIPLINARY PALLIATIVE CARE TEAM

TASKS OF THE MULTIDISCIPLINARY

PALLIATIVE CARE TEAM

To apply to the care of the dying

the same high standards of clinical analysis & decision-

making as are demanded in the care of patients expected to

get well

“Death is not extinguishing the light;

it is putting out the lamp because the Dawn has come.”

- Rabindranath Tagore

http://www.irtc.org/ftp/pub/stills/2000-08-31/dawn.jpg

palliative care for children

Health & Medicine