Palliative Care Consult Service supportive of patient/family goals - PDF document

9/28/2016 Creating Program Elements to Improve the Care of the Dementia is not a disease but a Dementia Patient in Palliative & general term for disorders in which Hospice Settings damage to brain cells results in Carla Jolley MN, ARNP, ANP-BC, AOCN, ACHPN irreversible decline Palliative Care APN/Program Coordinator WhidbeyHealth Palliative Care Consult Service Diane Fiurmara BSN, RN Hospice Manager WhidbeyHealth Hospice Coupeville, Washington GOAL: To improve patient’s symptoms and quality of life, lessen caregiver burden, ensure treatment decisions are well informed and Palliative Care Consult Service supportive of patient/family goals and needs Precipitating Events Creating a Meaningful Consult • Inpatient • Patient needs • Outpatient • Caregiver needs/facility needs • Assisted living facilities • Referring provider • Memory care facilities • Bridging to hospice • Home visits • Nursing home 1

9/28/2016 Patient Needs Presenting Symptoms of Major Types of Dementia Alzheimer’s Vascular Mixed Lewy Body Frontotemporal • Assessment Short-term memory Impaired executive Includes symptoms Fluctuating Disinhibition • Cognitive loss function of both Alz & Vasc cognition Forgetfulness Motor deficits Recurrent visual Expressive or • Functional hallucinations receptive aphasia • Nutrition Difficulty learning Difficulty retrieving Parkinsonian Emotional distance new tasks memories movements • Symptoms Poor attention Aphasia REM sleep disorder Stubbornness Difficulty with Inefficiency of Sensitivity to Apathy • Fall risk finding words thought neuroleptics • ADL’s (bathing!!!!!!!) Difficulty with Poor problem Repeated falls Selfishness complex task solving Poor recognition Autonomic Facial recognition dysfunction difficulty Systemic delusions Symptom Management Consult Note Goals • Agitation • Apathy • Development/type/stage of Dementia • History and number of infections in last year • Aggression • Sleep disturbances • Weight/nutritional status • Symptoms burden as well as behaviors • Delusions • Pain • Social history/include caregiver burden and transition to care setting • Hallucinations • Constipation • Performance status/include ADL’s/personal care issues • Recommendations/Counseling • Depression • Medication review • Symptom management • Counseling for cg/disease progression/behavioral management/safety • Advanced care planning Medications: the good?, the bad? And the Non pharm therapies ugly? • Music therapy • Benzodiazepines: worsening gait, fall risk, paradoxical reaction, relief • Touch therapy of anxiety/distress, sedation • Massage/sensory interventions • Antihistamines: discouraged • Aromatherapies mixed results: lemon balm & lavender • Antipsychotic drugs: not FDA approved/black box warnings • Exercise training • Benefits outweigh burdens? Balancing act • Spiritual support • Olanzapine 2.5 daily up to max 5 mg BID AD/VD (NNH 1:40) • Person centered communication strategies/training caregivers • Risperidone no more than 1 mg (NNH 1:27) • Quetiapine 25 mg at bedtime up to max 75 mg BID (NNH 1:50) • Events that trigger behaviors • Unmet needs anticipate and alleviated • Haldol ……..Cochrane review may help with aggression (NNH 1:26) • Lewy Body not to use Haldol and risperidone • Environmental triggers 2

9/28/2016 Facility Needs Caregiver Needs • Education on disease and managing behaviors • Advanced care planning • Advanced care planning • Regulations, regulations, regulations……… • Reliant on substitute decision making • Balance of benefits and burdens • Enlisting IDT support • Anticipatory guidance • Anticipatory guidance • Counsel on progression • Future complications • Resources • Self care Referring Provider Prognostication • More grounded assessment • FAST Functional Assessment Staging • Advanced Dementia Prognostic Tool (ADEPT) • Symptom management • Prognosis /Mitchell Index • Medication review http://eprognosis.ucsf.edu/calculators/#/ • Risk Core for Patients with Dementia and Pneumonia • Caregiving issues http://www.emgo.nl/quality-of-our-research/research- tools/prognotische-score • Prognostication Bridging to Hospice Resources • Collecting Data • Alzheimer's Org /APP • Bell, V & Troxell , D. A Dignified Life: The Best Friends Approach to Alzheimer’s • Education for caregiver/facility Care. 2012 Health Professions Press. Inc. Deerfield Fl. • http://www.alz.org/documents_custom/2016-facts-and-figures.pdf • Eligibility • NHPCO (National Hospice & Palliative Care Organization) • Caring for Persons with Alzheimer’s and other Dementias: Guidelines for Hospice Providers • Meeting thresholds https://www.caregiver.org/caregivers-guide-understanding-dementia-behaviors • AAHPM/HPNA • Discharging back to Palliative Care • National Institute on Aging has many education sheets for caregiver to download • challenges https://www.nia.nih.gov/alzheimers/topics/caregiving • FAST FACTS APP or http://www.mypcnow.org/fast-facts 3

9/28/2016 References • Arcand, m. End of Life Issues in Advanced Dementia. Part 2: Management of Poor Nutriotnal intake, dehydration, & pneumonia. April vol. 61 337-341. Canadian Family Physician • Brody,A. (2016) Cognitive Impairment. Advanced Practice Palliative Nursing/Ed. Dahlin,Coyne, Ferrell. P506-515. • Evans, B. (2002) Improving Palliative Care in the Nurisng Home from a Dementia Perspective. Journal of Hospice and Palliative Nursing vol 4 (2) Hospice • Sachs, G. et al (2004). Barriers to Excellent End-of-life Care for Patients with Dementia. Journal of General Internal Medicine 19:1057-1063. • Shega,J. & et al. (2005). Factors Associated with Self-and Caregiver Report of Pain among Community-Dwelling Persons with Dementia. Journal of Palliative Medicine Vol.8(3) 567-575. • UptoDate: Management of Neuropsychiatric symptoms of dementia. Press,D & Alexander, M. downloaded 8/19/2016 • UpToDate: Treatment of Dementia. Press,. & Alexander, M. downloaded 8/21/2016. Percentage of Dementia Diagnosis 2014 Changes to Hospice • NHPCO 2014 has 9.3% of patients with a primary diagnosis of Dementia Coding dementia Multiple dementia codes could not longer be used • In 1995 less than 1% of patients had a primary hospice diagnosis of CMS states “not appropriate as principle diagnosis because of dementia etiology or manifestation guidelines…you must code the underlying condition as principle diagnosis and these dementia • WhidbeyHealth Hospice had 11.4% of patients with a primary conditions would only be appropriate as secondary conditions” diagnosis of dementia (G31.1 and G30.9) in the last 12 month period This included: • Annual cost of dementia in the United States is estimated at 159-215 Dementia with behavioral disturbance F03.91 billion dollars Dementia without behavioral disturbance F03.90 Vascular dementia with behavioral disturbance F01.51 Vascular dementia without behavioral disturbance F01.50 And many others… Cost of Care Prevalence of Dementia • Current estimates suggest the annual cost of dementia care in the United States is between 159-215 billion dollars • These estimates quadruple in the next 50 years due to the increased aging population 4

9/28/2016 Dementia Predictions Cancer decline vs dementia decline Hospice Eligibility Referral FAST stage 7 or beyond • Inability to ambulate independently Screening by intake/referral nurse and hospice Medical Director • Inability to bathe independently • Inability to dress independently Comorbidities? • Incontinence (intermittent or constant) Challenges • Fewer than 6 intelligible words • Providers – unaware of hospice criteria for dementia…early One of the following in the last 6 month referrals/late referrals • Aspiration pneumonia • Pyelonephritis • Families – lack of understanding about disease progression/symptom • Septicemia management • Decubitus Stage 3 or 4 • Facilities – ability to provide level of care • 10% weight loss over last 6 months • Albumin < 2.5gm/dl Care Planning Education…Staff and Family • Creating individualized approaches to the Don’t assume staff have had the education or have the tools to care for the dementia patient Patient dementia • Nurses Why are we doing what we are doing? • Chaplain • Social work How each discipline can provide support • Aides • Volunteers 5

9/28/2016 Hospice Dementia Care in the Home Dementia care in AFH • Caregiver education • Long term relationship with patient • Regulatory issues • Caregiver burnout • PRN medications • Patient safety • Caregiver understanding of disease progression Dementia care in ALF/SNF Music Program • Establishment of meaningful care plans • Music and Memory • Medication Management – PRN meds? • Program Development Frequency of room checks, ability to assess • Successes and Challenges patient status • Ability to provide level of care required (ALF) • LTC pharmacies and challenges Conclusion • Finding the patient’s story • Defining quality of life not only from our perspective but families, facilities, and creating dignity • Negotiating the world of regulation • Doing good work 6