Managing Refractory Symptoms in the Child with Severe Neurological Insult:

The Role of the Pediatric Acute Care Nurse Practitioner

Maria Rugg, RN, MN, ACNP, CHPCN(c), & Sherri Adams RN MSN CPNP

The Hospital for Sick Children Toronto, Canada

TORONTO

Objectives1. Examine a framework to understand

refractory symptoms in the pediatric patient at the end of life using problem based learning

2. Describe the health care team’s application and use of the framework within a tertiary/quaternary academic health care centre setting

3. Describe a potential body of research to evaluate the role of the acute care nurse practitioner within this setting

Case History 7 year old female – previously well child

had near drowning incident in while at camp

Prolonged resuscitation on site Suffered severe neurological damage

secondary to hypoxia Initially in PICU then transferred to

General Pediatric Ward No CPR plan established – team told in

handover from ICU that the family did not wish to discuss this any further

Primary caregiver – Mother (parents separated), Father rarely visited

Case HistoryChild’s Condition

Severely neurologically impaired Vegetative state Non communicative, no suck or

swallowing ability Dependent for all ADL’s Severely opisthotonic, rigidity Constantly sweating, moaning Grimacing, repetitive facial movements Very disturbing for caregivers to

observe

Case HistoryInitial Plan

Form a relationship with the family Ongoing stabilization of patient Insert Gastrostomy Tube Manage “perceived” pain and

symptoms Teach family care of child and counsel

on prognosis Discharge child home or to an

institution depending on family’s needs and ability to do caregiving for child

Case HistoryProblems with initial plan

Rigidity and opisthotonus was refractory to medical management

Severe GERD, did not tolerate NG or NJ feeds (reflux/aspiration/pneumothorax)- consider - GJ or PICC

No good scale to quantify pain in neurologically impaired children

Tried to titrate medications for comfort – a “comfort level” was not reached

Mother “shouldering” family and making all care decisions

Case Summary

Severe neurologic injuryPrognosis: no improvementQuality of life perceived as poor

by family and health care teamMother just wanted patient to be

comfortable Multiple specialists/professionals

involvedSymptoms becoming

unmanageable by traditional methods

Framework For Symptom Management Dodd et. al. (2001) JAN, 33(5): 668-676

Framework For Symptom Management Dodd et. al. (2001) JAN, 33(5): 668-676

Assumptions of The Model Gold standard is self-report Do not have to experience symptom, just

be at risk Nonverbal patients experience

symptoms-caregiver report assumed accurate

Management may be targeted at the individual, group, family or work environment

Symptom Management is a dynamic process

Framework for Symptom Management, Dodd et. al. (2001) JAN, 33(5): 668-676

Framework For Symptom Management Symptom Experience

Perception-changes from the normResponse-physiological,

psychological, sociocultural and behavioral

Evaluation-judgments on severity, cause, treat ability and effect on lives

Framework for Symptom Management, Dodd et. al. (2001) JAN, 33(5): 668-676

Framework For Symptom Management Symptom Management

StrategiesPatientFamilyHealthcare systemHealthcare Provider

Framework for Symptom Management, Dodd et. al. (2001) JAN, 33(5): 668-676

Framework For Symptom Management Symptom Outcomes

Functional StatusEmotional StatusMortalityMorbidity&Co-morbidityQuality of LifeSelf CareCosts

Discussion Points -Symptom Outcomes

What is an Refractory Symptom?JOP 12(3):40-45(1996)

What is the symptom and how is it manifested?

For whom is it difficult? What are the child’s preferences and/or

capacity to tolerate the symptom? What are the family or caregivers

preferences and/or capacity to tolerate the perceived distress?

Have various approaches and alternative trails been fully explored?

Discussion Points - Symptom Experience/Management

What is the most comfortable way to live and die?

GJ tube/PICC: Prolonged life with severe neurologic injury with multiple medical interventions and eventual death from secondary complications

NG feeds: Respiratory failure secondary to aspiration

Withdrawal of fluid with sedation: up to 2-3 weeks of sedation, dehydration and eventual death

Discussion Points – Symptom Experience

Moral Distress: Is it ethically appropriate to treat or withdraw Sanctity of life

Child should not be denied life-saving treatment because of any degree of mental of physical disability, nor because of the presence of overwhelming suffering

Quality of life Life is not always better than death When life is felt to be worse than death, then death is

the treatment of choice Social utility

Refusal to allow the extreme needs of one patient to outweigh the competing needs of others

Greatest good for the greatest number

Discussion Points – Symptom Experience/ Management

Withdrawal of Fluids and Nutrition Few controlled studiesCase reportsEmerging consensus

Seriously ill or dying patients experience little if any discomfort upon the withdrawal of tube feedings, TPN, or IV hydration

Comfort Care for Terminally Ill Patients JAMA 272:16. 1994

Prospective case series in inpatient setting Determine frequency of symptoms of hunger, thirst and determine

whether these symptoms could be palliated without forced feeding, forced hydration, or parental nutrition

Adults with terminal illnesses 32 patients monitored over 12 month period

20 patients (60%) never experienced any hunger, 11 (34%) experienced hunger only initially

20 patients (62%) experienced no thirst or thirst only initially during their terminal illness

In all patients symptoms of hunger, thirst, and dry mouth could be alleviated with small amounts of food, fluids and/or by application of ice chips and lubrication of lips

Patients who are terminally ill did not experience hunger and those who did needed only small amounts of food for alleviation

Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients

What Happened? Teams collaborated to provide effective

symptom management and transition from active treatment to comfort care

Provided pain control through subcutaneous butterfly (morphine and methadone)-responded by reduction in hypertonia and mom able to hold in arms for first time since admission to hospital

Died comfortably (as per parent and healthcare provider report) 4 days after withdrawal of fluids and addition of round the clock sedation with family at bedside

Debrief sessions with team members identified changes in practice needed – Led by Palliative Care NP

APN Role in Pediatric Palliative Care Who Does What?

Concern that palliative care practitioners were only used as “ symptomatologists”

By definition palliative care aims to manage the physical, emotional and spiritual needs of patients facing life threatening illness and their families

Pediatric APN is ideally positioned to support team and families through the complex dynamic of symptom experience, symptom management, and symptom outcomes

Areas for Further Research The Palliative Care NP

Critical elements that characterize APNs and make these nurses uniquely qualified for an expanded role within this area include:

In depth knowledge of a specific patient population

Decision making capability Leadership skill Capacity to negotiate a complex integrated

health network (Weggel,1997) APN Role

Using the Sick Kids model the APN is well positioned to enhance and lead complex systems involved in the care of complex patients and their families

Summary Symptom management must consider the

whole patient and team Approach to care should be holistic and

collaborative - Utilizing a model to guide your practice

Comfort and understanding with end of life care requires experience and support from expert consultants ( such as a Palliative care team)

APN can be leaders in this specialized area of care-managing symptoms, families and team’s experience of those symptoms and outcomes of that experience