Palliative Care

Published on 10/06/2015 by admin

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chapter 23 Palliative Care

Gerri Frager, David Lapierre

Making the decision to have a child—it’s momentous. It is to decide forever to have your heart go walking outside your body.

ELIZABETH STONE

The Broad Scope of Palliative Care

Ideally, palliative care should be integrated throughout the entire course of any child’s significant illness. Unfortunately, in both public and professional perceptions, palliative care is often erroneously equated with end-of-life care. However, care at the end-of-life is only one component of palliative care, which also includes ongoing relief of symptoms, such as pain, breathlessness, disturbed sleep, providing psychosocial and spiritual support, and facilitating shared decision-making about treatment goals.

As so well delineated in A Guide to the Development of Children’s Palliative Care Services, four broad groups of children are described for whom palliative care is applicable, highlighted by several examples:

1. Life-threatening conditions for which curative treatment may be feasible but can fail (i.e., cancer, organ failure)

2. Conditions where death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities, but premature death is still possible (i.e., cystic fibrosis, muscular dystrophy)

3. Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years (i.e., neuro-degenerative illnesses, such as the mucopolysaccharidoses)

4. Conditions with severe neurological disability that may cause weakness and susceptibility to health complications, and may deteriorate unpredictably, but are not usually considered progressive (i.e., severe cerebral palsy, disability following brain injury)

Palliative care is not exclusively care at the end-of-life, but rather it has a place throughout the health care continuum.

This chapter is designed to help you develop the following clinical skills:

• Understand the broad scope of palliative care

• Assess pain across the pediatric age spectrum

• Provide effective pain and other symptom management for infants, children, and youth

• Have greater comfort with difficult conversations with children, youth, and their families

• Practice self-reflection and self-care

BOX 23–1 Clinical Skills to Bring to the Bedside of Every Patient (Living or Dying)

• Respect the patient’s wishes to talk at a later time.

• Be aware of your own judgments and values; then check them at the door.

• Always sit down!

• Listen far more than you talk.

• Do not be afraid of silence; it is your gift of space and time. Silence and gentle pacing allow patients and families to think and feel.

• Watch for nonverbal cues, and listen for verbal cues that hint at the patient’s concerns. Pick up and respond to such cues; they are “open windows” inviting you in.

• Be there in moments of great sadness.

• Allow tears. (Have Kleenex available but do not rush to hand it out. This can act like a Stop! sign.)

• Let the patient and family know of your availability. Give them written information about how to contact you by phone, pager and e-mail.

• Be self-aware (how this feels for you).

• Know that it is okay to share and show your own sadness, as long as it does not cause your patient and the family to have to comfort you.

Broaching the topic

Case History 1

History. Kate, age 11 years, has been treated previously for infantile acute myelocytic leukemia. She now has a secondary cancer that is unresponsive to a variety of chemotherapeutic regimens. She is having pain, and her appetite is nonexistent. Kate knows her prognosis is poor, but no one has really talked with her about how she feels. You could initiate that discussion as, “Kate, I’ve had a chance to read your chart and speak with the other folks who are helping look after you. Now, it would really help me to hear from you. Can you tell me how you think things are going?”

The emotional impact of pain, uncertainty, and a deteriorating condition can be difficult for children and families to acknowledge and understand, for themselves and in conversation. Thoughtful questions can help children experience their feelings in a safe environment, while other means of assisting children in exploring their emotions include play, drawing, or acting.

Useful questions might include:

• Can you tell me what’s bothering you most about how you’re feeling right now?

• If I were a magic genie who could grant you three wishes, can you tell me what they might be?

• If you were feeling much better, what would be the first thing you would like to do?

• Is there anything you can think of that we can do to help you feel better?

Continue to pace the conversation and the amount of information shared according to how the patient is pacing you. This conversation and exchange is much like a two-step dance; you do not want to outpace the patient, step on toes, or cause the patient unnecessary injury. Conversations can and should extend over multiple visits. This is possible if important topics are introduced early enough.

Find out what the patient understands, how the patient likes to receive information, and what the patient wants to know.

Assessing pain across the pediatric age spectrum

Pain assessment in pediatrics can be complex and is determined by the developmental capacity of the verbal child. Most 7- to 8-year-old children are able to describe the intensity of their pain using a simple 0 to 10 numeric rating, making sure they understand the anchors of 0 being no pain at all and 10 being the most pain they have had or could imagine having. A younger child, starting at about age 4, is able to self-report pain intensity using a visual analog scale, such as the Revised Faces Pain Scale (Fig. 23–1). Find out and use the words that each child uses for pain, such as “owie” or “ouch” when asking about the child’s pain.

FIGURE 23–1 Revised Faces Pain Scale. Faces from left to right correspond with a score of 0, 2, 4, 6, 8, or 10.

(From Hicks CL, von Baeyer CL, Spafford PA, et al: The faces pain scale—revised: Toward a common metric in pediatric pain measurement. Pain 93:173–183, 2001. Used with permission from IASP.)

Assessing pain in the nonverbal infant or young child requires astute behavioral observation, ideally with input from a parent or someone who knows the child best. Signs to watch for include the quality of cry, body posture, and degree of consolability.

Provide effective pain and symptom management

Suppose Kate reported her pain intensity as 7 out of 10. Applying the universal principles of the World Health Organization’s (WHO) analgesic ladder, codeine (Step 2) is inadequate for Kate’s pain severity. If pain is inadequately relieved with 1 mg/kg per dose, increasing the codeine dose will only result in increased side effects, with inadequate pain relief. This ceiling effect

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