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Practice Support Program End of Life . Learning Session 2. Acknowledgements.
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Practice Support ProgramEnd of Life Learning Session 2
Acknowledgements • End of Life Practice Support Program Committees:Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr. Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr. Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr. Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher, Pat Porterfield, Della Roberts, Christina Southey • BC Hospice Palliative Care Association Learning Centre for Palliative Care: Hospice Palliative End-of-Life Primary Care Provider Education Project • Fraser Health End of Life Care Program: Advance Care Planning Initiative • Gold Standards Framework (http://www.goldstandardsframework.nhs.uk)
Welcome back <TBD>
Patient/Family/Community’s voice (10 minutes)
Report back (50 minutes)
PSP Storyboard template for End of Life Team Name:___________ Date:___________
Background information • Why did we choose End of Life • What influence did the practice self-assessment have in your choice of changes in EoL
Team members – Team picture • List team members and roles
Our team aim An aim template for team: We aim to improve _________(name of process or topic) in _____(location) so that _______ (a numerical goal), by ________ (time period)
What did we do? • Summary of what you did (if you tested multiple changes in the action period pick your top 1 or 2 to share)
Study • What did you learn? • Did things change from baseline in your measures?
Act • Strong recommendations for next test cycle • Things we would do again • Things we suggest not to do • Are you ready to embed this change or will you retest and refine? • “Our recommendation for next cycle” • “Our recommendations if you were to try this”
Summary of current status • Successes: • Challenges and/or barriers: • What we are planning to test next:
Assessment (40 minutes)
Assess: Prognosis General: • Co-morbidity. • Recent, multiple ER visits/hospital visits. • Complications of recent hospital stay. • Reducing performance status (ECOG/Karnofsky/PPS). • Dependence in most activities of daily living (ADLs). • Impaired nutritional status despite attempts to improve • Weight loss 5-10% of body weight in last 6 months. • Serum albumin < 25 g/l.
Assessment: Holistic • Pain and symptom management. • Psychosocial care for person. • Psychosocial care for family. • Spiritual care. • Disease management. • Preparing for and managing dying. • Bereavement. (Canadian Hospice Palliative Care Association)
Assess: Symptom burden Edmonton Symptom Assessment Scale (ESAS) • Screening tool to assess symptom burden and key symptoms and their reported intensity on a scale of 0 10. e.g. Pain, Dyspnea, fatigue, anxiety or depression • Helps to monitor response to treatment. • Goal is symptom score < 4/10 • If > 4 then follow up with OPQRSTUV
ASSESS: Symptom burden Symptom prevalence in Heart disease; COPD; Renal; AIDS and Cancer • Pain, breathlessness, and fatigue – found among more than 50% of patients for all diseases. • 11 symptoms as prevalent as in cancer. • Common pathway for malignant and non-malignant disease. Salano, Gomes, Higginson, 2006
Symptoms in advanced heart failure Average of 6.7 symptoms in last 6 months of life. • Fatigue • Dyspnea • Pain • Dry mouth • Constipation • Nausea • Depression/anxiety Nordgren & Sorensen Eur. J Cardiovascular Nursing 2003
Assess: Goals of care Goals of care change over time and may include: • Maintaining and improving function. • Staying in control. • Relief of suffering. • Prolonging life for as long as possible or until a specific event (e.g. graduation, wedding). • Quality of life/ Living well. • Pain and symptom management.
Assess: Goals of care (continued) • Relieving burden for family members. • Strengthening relationships. • Preferences for location of care. • Life closure/ Dying well. • Personal wishes for management of dying. • Preferences for location of death. • Care for the family and for caregivers
Assess: Additional need for support/referral • ? 24/7 support. • ?Home Support ? Equipment or supplies. • Psychosocial care for person. • Psychosocial care for family. • Spiritual care. • Disease management (including risk of anticipated crisis/ “emergency”). • Preparing for and managing dying. • Bereavement.
Assessment: Pearls A good assessment: • Acknowledges patient goals of care. • Assesses the whole person and the “family” unit. • Uses Standardized tools to support practice and provide information. • Is proactive. • Facilitates collaboration.
Planning: What needs to happen next? (20 minutes)
A good care plan addresses: Whole person DIAGNOSIS ASSESSMENT SPREAD DISEASE BENEFITS OTHER PROGNOSTIC FACTORS TREATMENT BURDENS CARE PLAN PATIENT SYMPTOM BURDEN (ESAS) EXPERIENCE (SUFFERING) FUNCTIONAL STATUS (PPS)
Care plans • Directed by the prognosis and stage of illness and the patient/family centered goals of care translated into concrete, specific plans • May mean reduction in aggressive tests, procedures, medications. Not doing ‘too much’ or ‘too little. • Focus on quality of life and life completion. • Collaborative • Supportive.
Good Plans: Acknowledge realities • Assessment of prognosis/Approaching death: “Hope for the best and plan for the worst”. • Suffering of patient and family. • Unavoidable • Existential issues of meaning, multiple losses, functional decline; Spiritual concerns. • Avoidable: Iatrogenic • Lack of pain & symptom management; • Lack of communication; • Abandonment
Good Plans: Address supports for functional decline • Maximizing and maintaining function is important to patient’s/family’s quality of life • Assess & support equipment needs • Caregiver burden and support for the caregiver • Falls prevention
BC Palliative Care Benefits Program • Purpose: To support individuals of any age who have reached the end stage of a life-threatening disease or illness and who wish to receive palliative care at home. • Eligibility - Canadian residents who meet all criteria: • Living at home. • Diagnosed with life-threatening illness with a life expectancy of up to 6 months. • PPS score of 50% or less (exceptions considered). • Consent to palliative rather than treatment oriented care. • Physician submits the signed BC PalliativeCare Benefits Program application on patient’s behalf.
BC Palliative Care Benefits Program (cont'd) • Approved Patients Receive: • Palliative Care Drug Plan covers 100% of the cost of eligible prescriptions (approval within 24 hours). • Assessment by health authority to determine need for supplies and equipment (e.g. PPS 50->30%) - a priority assessment. • Clients reassessed monthly to confirm need and eligibility. • Community Nurse will discuss with GP if patient no longer in need of free palliative supplies and equipment. • Drug Coverage: • Some drugs not on PharmaCare’s Plan P formulary may be considered benefits under Special Authority coverage if needed to alleviate patient discomfort (#4.2.2 in Guide). • Coverage continues as long as the client is diagnosed as requiring palliative care.
Compassionate Care Benefits Form • Provide Employment Insurance (EI) benefits to those who have to be away from work temporarily to provide care or support to a family member who is gravely ill and who has a significant risk of death within 26 weeks (six months). • A maximum of six weeks of compassionate care benefits may be paid to eligible people.
