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