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Canyon Care Pediatric Palliative and Hospice Care

Training Manual

Referenced by: Textbook of interdisciplinary pediatric Palliative Care; Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes. 2011

A-1.1Infants and Toddlers (Ages 0-3)

The first 3 years are the most crucial for a child’s physical and emotional development.

▪Attachment and trust is built with the person nearest changed to them, usually the mother.

▪Between 6-12 months of age, infants develop stranger anxiety.

▪The average sleep duration starts to decrease after 6 months of age. Before this point the average duration of sleep per

day is 14.2 hours.

▪Regular sleep patterns become established by 12 months of age. Napping habits start to show a decreasing trend as the

child starts sleeping throughout the night.

▪Around 10-18 months separation anxiety begins.

▪By toddlerhood, the infant should improve skills in motor, language, and social development.

▪A severe word changed illness, hospitalization, and pain for these word changed young patients and their siblings may

hide word changed the process of their word changed developmental stages.

▪These young children are sometimes unable word changed to fully understand verbal explanations, and as a result they

can become withdrawn; they typically get startled by fearful noises, I don’t think that needs to be put there. I did not see it being mentioned in the book. sudden movements, or new people; as well as become disinterested in food or toys.

▪Once the patient is in recovery or out of the hospital; a slow and consistent approach is needed. It won’t be fixed

overnight. They need time getting used to changed themselves in changed the new/changed environment.

▪To help the child readjust, it is counseled changed that the primary caregiver starts with small steps. If separation is not

working well changed, start by placing the infant on the floor while you play with them rather than in your arms. Then try moving away from the child, but staying in the same room as he/she plays with toys. Then move further and further.


Only leave the room for a matter of 10-30 seconds to begin with. Placing the child in a playpen for the same short periods of time is helpful. Increase time away as the child becomes more comfortable with the distance. This will help build trust between the caregiver and the child.

▪If the illness is terminal, this age group will not understand the reality changed of death. They commonly recognize

changed death as getting distant changed or left alone word changed.

A-1.2Preschool Children (Ages 3-5)

▪ Natural egocentricity, magical thinking, and associative logic all characterize preschool children’s thinking.

▪ They often see changed illness and suffering in terms of their own thoughts and actions, and to have

misconceptions about the cause of the illness or the reasons for medical treatment. They may experience illness or treatment as a punishment. They may also perceive death as reversible or temporary.

▪ Young children’s reporting of symptoms is usually situation-specific, and they rarely can report their experience of

physical or emotional symptoms. For example, responses about how they feel today will be compared with yesterday, or concepts of better or worse may not be accurate indicators.

▪ Irritability may be a generalized response to physical discomfort, or to the disruptions in routines. The behavior of

a child with delays in language or cognitive development may appear particularly regressed and out of control due to their response of fears the dislike of certain sensations or circumstances.

▪ Similarly, brothers and sisters may not report their sibling’s symptoms perfectly changed, they often resort to

catastrophic images, often involving themselves, to express that something is drastically wrong. Symbolic play, stories, and drawing may be the most accessible expression of their experiences.

▪ A good example while using symbolic play would be to make or use a hand puppet. Children are more likely to

say that the puppet is in pain or isn’t feeling well, rather than expressing their own feelings.Referenced by: Textbook of interdisciplinary pediatric Palliative Care; Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes. 2011

A-1.3x School-age Children (Ages 6-12)

▪Children in these middle years are usually changed consumed with mastering skills in a range of physical, intellectual,

and social activities.

▪They are invested in fitting in with peers and with the social norms of their immediate community.

▪Children struggling with illness are set apart by virtue of physical changes and loss of bodily integrity, absence from their

usual way of life changed, and overwhelmingly, the ramifications of the diagnosis.

▪They may experience the distance of friends and changes in their relationships with family members.

▪Their thinking patterns are characterized by relatively cause and effect, with an interest in bodily functions and factual

information.

▪They have an understanding of the solidity of death, and yet may not always integrate that it is universal.

▪There may be less direct expression of emotion and more coping by using cognition, activity, and distraction.

▪School-age children are aware of the impact of their illness and distress on others, and may amplify or minimize their

communication based on others reactions.

▪They may not knowingly change their behavior or be aware of the interplay between their emotions and their physical

experiences.

▪This age group typically uses words more effectively than younger children, but they may need encouragement and

getting used to in changed experiences to freely describe their physical symptoms or emotional experience.

▪Drawing or displacement through play or storytelling may continue to be important methods for expression.


▪Siblings may also experience a sense of “apartness” of being different or stigmatized, by having a seriously ill brother or

sister.

▪These children often live in fear of becoming sick themselves, along with suffering a complicated mix of guilt at having

escaped the illness and shame at feeling this relief. They often express an eager wish to understand and be more involved.

▪They are very smart. Despite people telling them that their sibling is going to be okay, added they usually know the

truth.

A-1.4 Adolescents (Ages 13-18 Years)

▪Adolescents are characterized by a progressing process of identity formation, appreciation of abstract concepts, and

increasing sophistication in both intellectual and emotional understanding of situations and relationships.

▪Just as these young people are struggling to establish separation and autonomy from family, they must contend with

the obligatory dependence and vulnerability imposed by the illness.

▪While adolescents realize changed the permanence of death, they may still feel personally and emotionally invincible.

▪Offering adolescents a role in decision-making is always valued changed, whether or not they accept.

▪Because many of them try to protect their parent from their own distress, it can be a frightening prospect to make their

own needs known.

▪It’s important to encourage the child to participate with their peers and regular activities as their illness allows. It is also

critical to allow self-directed symptom management.

▪Written expression, music, media, and web-based activities can provide opportunities changed for the adolescent to

express their feelings without feeling guilty. Referenced by: Textbook of interdisciplinary pediatric Palliative Care; Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes. 2011

▪Adolescent siblings are caught in a similar web; they have difficulty sorting out their role and needs from that of being

another parental figure. It is important for the parents or caregivers to allow them to feel some normalcy. They need to keep up with their peer relationships and activities just as much as the patient. This will the sibling from developing feelings of resentment and anger.

B. Pediatric Pain and Symptom Management

B-1 Analgesics

Analgesics can be divided into three groups of drugs: Non-opioid analgesics, opioid analgesics, and adjuvant analgesics.


The prescription of these drugs for children with cancer pain is based on the WHO analgesic ladder, which emphasizes pain intensity for the guide to choice of analgesic, rather than etiologic factors.

In other words, the prescription of analgesics should be according to pain severity, ranging from acetaminophen and non-steroidal anti-inflammatory drugs for mild pain to opioids for moderate to extreme pain.

The choice of analgesics is individualized to achieve an optimum balance between analgesia and side effects.

Drug Equilanalgesic dosesUsual starting IV or SC doses

and intervalsParenteral/oral

dose RatioUsual starting oral doses

and intervals

Parenteral Oral Child <50kg Child >50kg Child <50kg Child >50kg

Codeine 120mg 200mg N/R N/R 1:2 0.5-1 mg/kg every 3-4hrs

30-60mg every 3-4

hours

Morphine 10mg 30mg

(Chronic dosing)

Bolus:

0.1mg/kg every 2-4hrs

Infusion:

0.03

mg/kg/hr

Bolus:

5-8mg every 2-4hrs

Infusion 1mg/hr

1:3

(Chronic)

Immediate release:

0.3mg/kg

Every 3-4 hrs

Sustained release:

20-35kg:

10-15mg every 12hrs

35-50kg:

Immediate release:

15-20 mg every 3-4hrs

Sustained release:

30-45mg every 12

hours


15-30mg every 12 hrs

Oxycodone N/A 15-20mg N/A N/A N/A 0.1-0.2mg/kg every 3-4hrs

5-10mg every 3-4hrs

Methadone 10mg 10-20mg 0.1mg/kg every 4-8hrs

5mg 1:2 0.2mg/kg every 4-8hrs

10mg every 4-8hrs

*Methadone requires close monitoring due to the possible accumulation of the drug in the body. This may produce delayed sedation. If this occurs, hold doses until sedation has lessened or cleared. Spread dosing interval to every 8-12 hours as needed, per patient tolerance.

Fentanyl 100mcg (0.1mg) N/A Bolus:

0.5-1 mcg/kg every 1-2 hrs

Infusion:

0.5-2 mcg/kg/hr

Bolus:

25-50mcg every 1-2hrs

Infusion:

25-100 mcg/hr

N/A N/A N/A

Hydromorphone 1.5-2mg 6-8mg Bolus:

0.02mg/kg every 2-4hrs

Infusion:

0.006 mg/kg/hr

Bolus:

1mg every

2-4hrs

Infusion:

0.3 mg/hr

1:4 0.04-0.08 mg/kg every

3-4hrs

2-4mg every 3-4hrs

Meperidine (Pethidine)

75-100mg 300mg Bolus:

0.8-1 mg/kg every 2-3hrs

Bolus:

50-75 mg every 2-3hrs

1:4 2-3mg/kg every 3-4hrs

100-150mg every 3-4hrs


Meperidine may cause seizures. Use other Opioids if possible.

N/A: Not Available, N/R: Not Recommended

Table 31-2: Textbook of Interdisciplinary Pediatric Palliative Care. By Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes. 2011; Pg:291

Acetaminophen

Acetaminophen is one of the most commonly used non-opioid analgesics in children. A possible side effect can be hepatic or renal injury, but this is very uncommon in therapeutic doses. Unlike aspirin, acetaminophen doesn’t have an association with Reye Syndrome. So it can be given at any age.

The recommended oral dose is: 15mg/kg every 4-6 hours, with a maximum daily dose of 60mg/kg/day. There is no research showing that it is safe for children to have chronic acetaminophen administration (pg. 291)

Aspirin and Nonsteroidal Anti-inflammatory Drugs (NSAID)

Aspirin and NSAIDs are commonly contraindicated in pediatric oncology patients who are usually at risk of bleeding from thrombocytopenia.

Choline magnesium trisalicylate (Trilisate) has been hugely recommended, based on reports from adults. In minimal effects on platelet function in vitro and experimental studies showing slight abdominal irritation in rats, in contrast to aspirin.

The cyclooxygenase-2 (COX-2) inhibitors target a certain isoenzyme involved in the generation of prostanoids, which contribute to pain and inflammation.

Codeine

In pediatrics, codeine is usually handled using the oral route and in combination with acetaminophen. It is prescribed for slight to reasonable pain.

Codeine is at times used in pediatrics in oral amounts of 0.5-1 mg/kg every 4 hours for little ones older than 6 months. Pharmacogenetic studies have shown that 4% to 14% of the population is short on the hepatic enzyme responsible for

the conversion of codeine to morphine. A pediatric study has shown that 35% of kids showed inadequate conversion of codeine to morphine.


Tramadol

Tramadol may be useful painkiller for the management of moderate cancer pain and is imagined to cause less respiratory depression than morphine.

While tramadol has been studied for postoperative pain in children, there are few data on the protection and value of tramadol for little ones with pain due to cancer or chronic illness.

Oxycodone

Oxycodone is used for moderate to severe pain in children who have cancer. Oxycodone has a higher clearance value and a shorter elimination half-life, t1/2, in kids ages from 2 to 20 years than

adults.

Morphine

Morphine is one of the most extensively used opioids for moderate to severe cancer pain in children. Morphine is delayed in the first 1 to 3 months of life. An oral-to-parenteral potency ratio of approximately 3:1 is commonly encountered during chronic administration.

Hydromorphone

Hydromorphone is an alternative opioid when the amount blasts upward of morphine is limited by side effects or volume restriction is needed for parenteral guidance.

Studies show that intravenous hydromorphone is 5 to 8 times as potent as morphine.

Fentanyl

Fentanyl is a copied opioid that is near 50 to 100 times more potent than morphine during acute intravenous management.

Oral transmucosal fentanyl makes a rapid arrival of effect and escapes first-pass hepatic clearance. The mean clearance and volume of distribution of transdermal fentanyl are the same for both adults and youngsters,

but the variability is higher in adults.


Meperidine

Meperidine has been used for procedural and postoperative anguish in children. Meperidine is not generally recommended for children with chronic pain but may be an acceptable alternative to

fentanyl for small painful procedures.

Methadone

Methadone is a synthetic opioid that has a long and variable half-life. Following single parenteral doses, its potency is similar to that of morphine.

Recent patient assessment is the key to safe and effective use of methadone. If a patient becomes oversedated at the start of dose escalation, it is recommended to stop dosing, not just reduce the

dose, and to observe the patient until there is increased awerness.

Methadone remains a long-acting agent when administered either as an elixir or as crushed tablets.

C. Loss, Grief and Bereavement for Pediatric Families and the Child

C-1 During a Resuscitative Effort

Near 75% of children who experience pulseless cardiac arrest in the hospital, and 90% of those who experience an out-of-hospital arrest will depart from this life.

Families are now regularly invited to be present during resuscitative efforts. The data suggests that when they are there, there is less anxiety, litigation, and second-guessing about the efforts and

competence of the staff providing that care.

The Lingering Child

To suggest ways how perhaps the parent can be with the child can also ease family distress. Looking at family photos. Reflecting on memories.


Putting a wet cloth on child’s forehead.

Knowing what is expected for the child, meaning how many visitors he/she can handle, stick with it. This means a lot to them.

Hastening Death

If the parent requests hastening, it is golden to respond with more than just a statement that hastening is not legally permissible.

Just as other requests should be explored to identify core meaning and fears, so should this type of request.

Explanation of legal and effective alternatives, such as further titration of symptom-relieving medications and palliative sedation, is helpful.

Participating in Prayer with Families

Clinicians are, at times, asked to pray for a child or to lead a family in prayer. At times they may not want to for whatever it may be. Make sure to be aware of this.

When praying for patient, it may be best for clinicians to pray if they are okay with it. They get to pray in how they please.

When the family prays sit with those involved. A clinician who feels unsafe with family my chose to sit away where there is support. It helps him/her to still support the family, patient without feeling left out.

Clinicians my kindly choose to not accept to pray with the family. To help the patient to feel loved, the clinician may want to say, “Right now I refuse to participate in this prayer; although, I will keep thinking of you as an amazing wonderful child.”

Memory Making

There are many things families can do during the last days of their child’s life.

Making hand, finger prints.Referenced by: Textbook of interdisciplinary pediatric Palliative Care; Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes. 2011

Making a box, book, etc. Taking photos, filming.

You know, it is essential to suggest many options, even letting them think of options. Certain options work others, some don’t. When a family refuses to accept your suggestion, be okay with it. Both your boundaries matter.

D- Communication with family, community, and interdisciplinary team

D-1.0 A Therapeutic Alliance

Creating a good relationship between clinicians and families is the cornerstone of quality care. A bond of trust is vital to the process of caring. To establish a therapeutic alliance with the patient and their family, clinicians must:

Demonstrate empathy and a personal interest in their lives. This will help develop the foundation of the alliance and provide a sense of connection.

Understand their beliefs, values, expectations, fears, and worries. Listen willingly, empathize, solve problems, and encourage life-affirming events as they face challenges associated with

a life-threatening illness. Schedule regular and carefully prepared meetings with adequate time to have in-depth conversations with them.

A successful therapeutic alliance will allow the interdisciplinary team to recommend options for treatment and other issues of relevance based on the existing evidence, on realistic goals, and within the child’s and the family’s psychosocial and spiritual context.


D-1.1 Beliefs and Values

Beliefs and values give meaning to a person’s life. They influence the patient’s and family’s perceptions about how things are and how things should be. To understand the patient’s and family’s illness experience, the interdisciplinary team must actively listen and question to gain insight about their core beliefs and values as these may dictate their preferences in certain situations. Having open and thoughtful conversations about their goals of care can be an effective approach to understanding their values and priorities.

D-1.2 Exploratory Questions Useful in Communicating with Children and Families

Communication Theme Exploratory Questions

Beginning the ConversationTell us about your child before he/she became sick. What types f things does your child enjoy?How has this illness impacted your child? Your family?What is most bothersome to your child today? Pain, shortness of breath, fatigue, nausea, constipation, anxiety, sadness?

Beliefs and ValuesDo you have particular beliefs that guide you?What is most important for you and your family right now?Given your understanding of your child’s illness, what are you hoping for?

Sadness and DepressionHow has your child’s illness impacted your own life?Please share with me the emotional changes you have noticed in your child.What helps you get through these days?

Fear and AnxietyWhat worries you the most right now? For your child, your family, and yourself?Would it be helpful to talk about what to expect if your child’s illness gets worse?

Table 4-1: Textbook of Interdisciplinary Pediatric Palliative Care. By Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes. 2011; Pg:32

D-1.3 The Role of Communication

Effective, collaborative communication is indispensable when striving for the highest quality of palliative care and has been described as one of the most common procedures in medicine.


A core function of the pediatric palliative care program is to structure opportunities that foster better interdisciplinary and family communication. This way team members develop greater skill in timing important discussions that involve delicate matters. Examples of these conversations include:

Discussing prognosis, signs of progressive disease, and treatment options, Anticipatory guidance in preparation for end-of-life care, Discussing family goals and wishes, Discussing, in a non-judgmental manner, end-of-life issues such as resuscitation withdrawal of artificial life support,

place of death, organ donation and autopsy, Talking with the sick child and siblings as appropriate, Compassionately pronouncing the child’s death.

Effective communication also includes consistent documentation of palliative care team consults or involvement; information discussed with providers, patients, and/or family members and recommendations.

Routine interdisciplinary meetings adapted from the hospice model of care, have come to be regarded as an essential requirement for team communication and program functioning. These meetings not only accomplish clinical work but also to build team cohesiveness.

D- 1.4 Collaborative Communication

Collaborative communication is defined as the exchange of cooperative verbal and nonverbal messages between two or more parties that are committed to working toward a common goal.

A related but different aspect of collaborative communication and conflict involves how family members communicate with each other about the child’s medical status. It is not altogether rare for parents to ask the physician not to disclose to the child the fact that her or she is not going to survive a worsening disease, such as multiply relapsed cancer. Almost always this occurs in the context of pre-existing closed family communication patterns and where the parents are exhibiting other


manifestations of difficulty accepting the child’s coming death. A clinician’s prior commitment to being honest with the child, in a developmentally appropriate way must be respected.

D- 1.5 Collaborative Decision Making

Collaborative decision making is important when family members are faced with making palliative care decisions for their loved one. It is crucial for family members to be given the time to communicate collaboratively with healthcare providers about the best care options for their child. Collaborative decision-making also implies supporting medical decision-making by the child in the context of his or her family. The child should be involved in a developmentally appropriate way in decisions concerning continuation of disease-directed treatment.

If a family’s child has not been encouraged to develop personal autonomy through life decisions, it will be difficult for the family to embrace this approach at end of life. For this reason, it is useful for care providers to model good practice for the parents and promote decision-making experiences for the child beginning early in his or her care. Simple steps for this can include:

Directing initial medical questions to the child during clinical encounters, Listening carefully to the child and acting on the information provided, Endeavoring to have the child’s assent for interventions being considered, Providing graduated opportunities for the child to exercise choice over appropriate aspects of their care.

E- Psycho-social & Spiritual Care of Children

Chronic life threatening, and incurable illness in a child is emotionally challenging and tragic. Anticipatory guidance in psychosocial and spiritual care is very important.

E-1.0 Family Centered Care


Recognized as the standard of care for children, family is the primary organizing structure. It is important for clinicians to do the following:

Get to know the family Build on their strengths Recognize and respond to needs Understand their coping mechanisms and assess how functional they are Intervene when coping is potentially harmful, to protect the child Maximize family’s safety and wellness

Each family will have their own experience based on its own psychosocial history. Each member will develop their own personal meaning of the experience. The interdisciplinary team considers the whole family and supports each member working toward reducing suffering, both physical and psychological.

E-1.5 Faith and Spirituality

Faith and spirituality have great importance when it comes to caring for a child, but how care givers approach this topic needs be with tact and respect. Screening can be done by any of the interdisciplinary team members to identify a patient’s belief practices. A faith and spiritual assessment however, should be done by a professional chaplain.

E-2.0 FICA

A screening should be done at the very beginning of care to ensure belief practices are respected and spiritual needs are met throughout care. To screen, care givers can use a tool called (FICA), the Faith & belief, Importance, Community, & Address in care tool. There are two forms of this tool. One is for a self-assessment and the other is for a physician’s assessment.

F - Do I/You have a belief that helps coping? If not, what gives my/your life meaning?

I - Is this important to me/you? Does it influence healthcare decisions?

C – Do I/you have a community that is important? Should I/you do more with this community? If I/you do not belong to a community should I/you find one?Referenced by: Textbook of interdisciplinary pediatric Palliative Care; Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes. 2011

A – What is my action plan? What do I need to change/develop? How would you like me to address these issues in your healthcare?

E-2.5 HOPE

A second screening tool that’s commonly used is HOPE.

H: Identify sources of hope, strength, comfort meaning and peace.

O: Organized religion’s role.

P: Identifies personal spirituality practices

E: Explores the effects on medical care and end of life decisions.

There isn’t a succinct and effective assessment tool as each person’s story and needs are unique. The questions should be, can you tell me what you like best about going to church, synagogue, mosque, or other? Keeping the questions open ended will yield more information.

It is important to acknowledge that this isn’t a checklist you check off in order to find out about a family’s spirituality, team members must listen to narrative and telling of experiences to learn. As team members gather narratives, the chaplain, team members and perhaps family’s personal clergy can evaluate spiritual needs.

F- Coordination of Care within the Child’s Community

F-1.0 Family Resources

Families need to know that they aren’t alone and that there are many resources and strategies available for coping and gaining a sense of control. Acknowledge the risk for physical and emotional fatigue and recognize the benefit of communicating their needs to clinicians through consistent care and support in solving problems, family’s sense of isolation and despair will decrease.


The team should provide options to help with coping such as grief counseling and financial advice. Facilitate access to hospital, community specialists, psychologists, social workers, chaplains, art and music therapists. Educate the family about their resources.

Most importantly families will need guidance on the use of hospice services. Many families have incorrect perceptions about what hospice is and the kind of services that these agencies provide.

F-1.5 Community

Children, like adults, are members of many communities. For children school is the main one. The pursuit of developmentally appropriate learning is critically important for the psychological well being of children and adults in our society. Keeping children engaged in the life activities that define normalcy for healthy children is psychologically beneficial. There are many communities in which palliative care may be provided and the focus of the pediatric palliative care team will need to change appropriately.

Location of Care Focus of pediatric palliative care

Hospital-based medical care Work collaboratively with primary medical team; assist, advise, advocate; help family explore options

Home-based careMaintain contact with patient after discharge; liaison between hospital and home; sounding board for family, patient

Community-based medical careCoordinate discharge to home; maintain contact to remain up to date on care needs at home and change in health status; support primary care provider

Community-based organizations Liaison to school, religious organization, service organizations, clubs, sports teams


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