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Managing Refractory Symptoms in the Child with Severe Neurological Insult: The Role of the Pediatric Acute Care Nurse Practitioner Maria Rugg, RN, MN,

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Presentation on theme: "Managing Refractory Symptoms in the Child with Severe Neurological Insult: The Role of the Pediatric Acute Care Nurse Practitioner Maria Rugg, RN, MN,"— Presentation transcript:

1 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





6 Objectives 1. 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 teams 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

7 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

8 Case History Childs Condition Severely neurologically impaired Vegetative state Non communicative, no suck or swallowing ability Dependent for all ADLs Severely opisthotonic, rigidity Constantly sweating, moaning Grimacing, repetitive facial movements Very disturbing for caregivers to observe

9 Case History Initial 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 familys needs and ability to do caregiving for child

10 Case History Problems 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

11 Case Summary Severe neurologic injury Prognosis: no improvement Quality of life perceived as poor by family and health care team Mother just wanted patient to be comfortable Multiple specialists/professionals involved Symptoms becoming unmanageable by traditional methods

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

13 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

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

15 Framework For Symptom Management Symptom Experience Perception-changes from the norm Response-physiological, psychological, sociocultural and behavioral Evaluation-judgments on severity, cause, treat ability and effect on lives

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

17 Framework For Symptom Management Symptom Management Strategies Patient Family Healthcare system Healthcare Provider

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

19 Framework For Symptom Management Symptom Outcomes Functional Status Emotional Status Mortality Morbidity&Co-morbidity Quality of Life Self Care Costs

20 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 childs 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?

21 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

22 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

23 Discussion Points – Symptom Experience/ Management Withdrawal of Fluids and Nutrition Few controlled studies Case reports Emerging consensus Seriously ill or dying patients experience little if any discomfort upon the withdrawal of tube feedings, TPN, or IV hydration

24 Comfort Care for Terminally Ill Patients JAMA 272: 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

25 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

26 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

27 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

28 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 teams experience of those symptoms and outcomes of that experience

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