Raising the Bar: Creating a Dementia Capable Hospice Team. Objectives

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Raising the Bar: Creating a Dementia Capable Hospice Team Maribeth Gallagher, DNP, PMHNP-BC, FAAN Dementia Program Director Hospice of the Valley mgallagher@hov.

1 Raising the Bar: Creating a Dementia Capable Hospice Team Maribeth Gallagher, DNP, PMHNP-BC, FAAN Dementia Program Director Hospice of the Valley mgallagher@hov.org Objectives Identify the disease-specific needs of individuals and families dealing with advanced dementia Outline the roles and responsibilities of members of the inter-disciplinary team in addressing the needs Delineate methods for ensuring proper education and clinical practice to effectively respond to the care needs of patients with advanced dementia HOV

2 Background The evidence reveals. Most adults report they would not want aggressive medical interventions if they had advanced dementia. Most proxy decision-makers report that comfort is the primary goal of care for their person with advanced dementia. And yet Gozalo et al, 2011; Hanson et al, 2011; Volandes et al, 2009; Volicer, 2005 Background The evidence reveals. People with end-stage dementia have Fewer completed advanced directives More distressing symptoms amenable to treatment ( pain and neuropsychiatric symptoms) More costly & burdensome interventions with little to no clinical benefit (antibiotics, IVs, feeding tubes, restraints, labs) More transitions of care that can be avoided (Emergency room visits, hospitalizations, ICU) Less use of hospice services Meier, 2015; Mitchell et al., 2012; Shega et al., 2008; 2009; Teno et al, 2011; Unroe & Meier, 2013 HOV

3 The Critical Question How do we bridge the gap between the care people say they want and what they actually receive? Specific Challenge for Hospices How do we provide people with dementia the same excellent end-of-life care afforded those with more common hospice diagnoses? People who have dementia as a primary or secondary hospice diagnosis have unique needs. How do hospices become more dementia capable to serve these needs? HOV

4 Our hospice s endeavors Hospice of the Valley (HOV) (Est. 1977) One of the largest non-profit hospices in U.S. Serves the Phoenix Metro area Phoenix is a retirement destination for U.S. & Canada Large number of retirement communities Daily census Free standing Patient Care Units (PCU) Creating a Dementia Capable Hospice Hospice of the Valley s Dementia Program (Est. 2003) Initial efforts. Consults via in-person visits, phone & virtual technology Discipline-specific education on the unique aspects of delivering dementia comfort care Creation of materials/resources to support ongoing integration of practices for lay & professional caregivers Innovate, evaluate, disseminate feasible & affordable approaches to advance excellence in dementia care HOV

5 Dementia-specific care requires knowledge of: Disease progression & usual causes of death Alzheimer s disease & other common forms of dementia (DLB, vascular dementia, PDD and FTDs) Realistic goals of care & detailed health care decisions Common complications to prevent, anticipate, & respond in a timely manner Risk/ benefit analysis of all meds / treatment options Aggressive comfort care methods Customized non-pharmacological approaches Dementia caregiver support methods & resources Staff Education Examples All new hires including volunteers Mandatory dementia overview at orientation Review Joining the Journey: A Guide to Dementia Comfort Care (Dougherty et al, 2006) Anticipatory approach to care Nurses, CNAs, Patient Care Units (PCU) staff Additional in-depth dementia & delirium education Social Workers Mental Status Assessments Health Care Decisions for Advanced Dementia Caregiver Grief and Support Methods Community resources HOV

6 Staff Education Examples (cont.) All clinical staff Pain Assessment in Advanced Dementia(PAINAD) (Warden, Hurley & Volicer, 2003) Non-pharmacological approaches Optional (but strongly encouraged) Stimulation of Senses (S.O.S.) training Music & Memory training Dementia Care Part I & II workshops Dementia Digests Quarterly in-services on dementia-related updates Dementia Care Domains Admission Period Symptom Management Quality of Life / Meaningful Connections Slow Decline / Death or Recertification HOV

7 Admission Period Nurses & Medical Directors Review patient s hospice eligibility criteria Clarify goals of care with proxy decision-makers Establish functional, cognitive and behavioral baselines PAINAD score Identify presence of any behaviors / mood disorders Review all current medications & treatments Palliative Pharmacological Considerations Consider benefit / burden of each medication & simplify. Discontinue medications targeting long-term benefits (e.g., statins, tight BP & glucose control) Eliminate potentially inappropriate meds when possible (e.g.,anticholinergics, benzodiazepines ) Anticipate & treat PAIN (scheduled vs. prn) Only use antipsychotics when absolutely necessary & frequently reassess to discontinue ASAP AGS, 2012; AGS 2014 HOV

8 Clarifying Overall Goals of Care Key conversation(s) Is the primary goal comfort? Review the risks/benefits of any new diagnostic workups & all therapeutic interventions Provide support for proxies in pursuing aggressive comfort care rather than burdensome, futile & costly interventions that will not enhance quality of life (Meier, 2015) Admission Period Social Worker Complete documents detailing MPOA & advance directives Mental Health Power of Attorney (in AZ) Customize care to the individual & family Perform mental status assessment & communicate findings / tips with team Complete About Me form Assess & provide caregiver support needs HOV

Discuss, educate and confirm details Advance Health Care Directives CPR Hospitalizations Antibiotics Feeding Tubes It is most effective to review these details when things are relatively stable,

, 2011;Givens et al, 2010; Hanson et al, 2011; Mitchell et al, 2011; Snyder et al, 2013;Teno et al, 2009; Unroe & Mitchell, 2013; Volicer, 2005; Volandes et al, 2009 Ongoing Caregiver Education

9 Discuss, educate and confirm details Advance Health Care Directives CPR Hospitalizations Antibiotics Feeding Tubes It is most effective to review these details when things are relatively stable, as dementia progresses, & as complications arise. Albrecht et al, 2013; Fulton et al., 2011;Givens et al, 2010; Hanson et al, 2011; Mitchell et al, 2011; Snyder et al, 2013;Teno et al, 2009; Unroe & Mitchell, 2013; Volicer, 2005; Volandes et al, 2009 Ongoing Caregiver Education and Support Legal Financial Respite Community agency services Caregiver education (1:1 and workshops) Psycho-educational & Skill-based training Caregiver support (incl. FTD & LBD groups) Caregiver assessments grief, burden, perceived stress Self-care techniques - Mindfulness meditation classes HOV

10 Admission Period Chaplain, CNA, Volunteers Chaplains Collaborate w/ team to tailor support to fit needs of patient and family Determine best form of meaningful connection with patient & family CNAs Bathing for Comfort form Consult w/ team to customize communication and distraction/comfort techniques Volunteers Consult w/ team to customize approaches Symptom Management (may include delirium, pain, changes in sleep or appetite, falls, infection, resistance to care ) As an example Behaviors have meaning and may be an expression of unmet need(s) or discomfort / distress Demystifying Behaviors Staff explore for underlying causes & remedy Delirium infections, impaction, metabolic, meds, etc. Environmental or caregiver approach triggers Common unmet needs - hot/cold, thirst/hunger, toileting needs, boredom, fatigue, etc.) (Kovach et al, 2005) HOV

Interventions All will use PAINAD to ensure ongoing observations for pain in the non-verbal patient and report ASAP to nurse so analgesia is provided and evaluated.

11 Interventions All will use PAINAD to ensure ongoing observations for pain in the non-verbal patient and report ASAP to nurse so analgesia is provided and evaluated. Trial non-pharmacological methods first when appropriate Differentiate psychotic / non-psychotic features Remember Antipsychotic medications for the treatment of behavioral and psychological symptoms of dementia (BPSD) should not be prescribed without assessing for the underlying cause(s) of the behavior. (AGS, 2014) Tampi et al, 2011; Warden, Hurley and Volicer, 2003 Optimizing Quality of Life / Maintaining Meaningful Connections Completed About Me form Stimulation of Senses (S.O.S.) Individualized Music (ipod program) Quiet Moments CNAs Memory Corps Volunteers Pet Therapy HOV

12 Slow Decline / Death or Recertification Documentation of decline Management new / old symptoms Assess for delirium Ongoing education & support for family /caregivers through process of decline Education to Improve Care Upstream Addressing Community Needs Hospitals & private practices First Responders Fire, Police, Sherriff Physicians & medical students Nursing, Social Workers, Chaplaincy programs Cultural organizations Faith Communities Long-term facilities & home care staff Lay dementia care partners News media, conferences & professional publications HOV

Hospice of the Valley & those we serve have benefited from 12 years of having a comprehensive dementia program as evidenced by: High evaluation on satisfaction scores by staff and clients Quality

13 Hospice of the Valley & those we serve have benefited from 12 years of having a comprehensive dementia program as evidenced by: High evaluation on satisfaction scores by staff and clients Quality indicators reveal ongoing integration of dementia comfort care knowledge and skills among all members of the hospice team Increased patient referrals in a very competitive market Widespread recognition And our efforts continue More Recent Endeavors The first in-patient hospice unit specifically for people with dementia (est. 2013) Palliative Care for Dementia (pre-hospice care for all stages of dementia through a psycho-educational and support program for caregivers) Mindfulness meditation (based on MBSR) - Hospice staff - Dementia care partners HOV

In Summary With the burgeoning numbers of people dying from dementia, hospices must become more dementia capable in order to meet the unique needs of patients and families.

14 In Summary With the burgeoning numbers of people dying from dementia, hospices must become more dementia capable in order to meet the unique needs of patients and families. Inter-disciplinary hospice teams requires extensive education and support to address these needs. To become dementia capable, hospices must provide the time and resources to facilitate best clinical practices in palliative dementia care. Thank you. Questions? HOV

15 References Albrecht JS, Gruber-Baldini AL, Fromme EK, McGregor JC, Lee DSH, Furuno JP. Quality of hospice care for individuals with dementia. JAGS. 2013; 61: American Geriatric Society (AGS).Ten things physicians and patients should question Accessed on April 25, American Geriatrics Society 2012 Beers Criteria Update Expert Panel. American Geriatrics Society updated Beers Criteria for potentially inappropriate medication use in older adults. J Am Geriatr Soc Apr;60(4): Dougherty J, Gallagher M, Cabral D, Long CO, McLean A. About me: Knowing the person with advanced dementia. Alz Care Quart. 2007; 8(1): Dougherty J, Gallagher M, Harrington, P., Hamilton, G., Cabral D, & McLean A. (2006). Joining the journey: A guide to dementia comfort care. Phoenix, AZ; Hospice of the Valley. Fulton AT, Rhodes-Kropf J, Corcoran AM, Chau D, Kerdkovits E & Castillo EH. Palliative care for patients with dementia in long-term care. Clin Geriatr Med. 2011; 27; Givens JL, Kiely DK, Carey K, Mitchell, SJ. Healthcare proxies of nursing home residents with advanced decisions: Decisions they confront and their satisfaction with decision-making. JAGS. 2009; 57: Goldfeld KS, Stevenson DG, Hamel MB, Mitchell S. Medicare expenditures among nursing home residents with advanced dementia. Arch Int Med. 2011; 171(9); Gozalo P, Teno JM, Mitchell SL, et al. End-of-life transitions among nursing home residents with cognitive issues. NEJM. 2011; 365: Hanson LC, Carey TS, Caprio AJ, et al. Improving decision making for feeding options in dementia care: a randomized trial. JAGS. 2011; 59: Jones BW. Critically appraised topic: the effect of hospice care in patients with dementia. AJHPM. 2013; 30(6): Kiely DK, Givens JL, Shaffer ML, Teno JM, Mitchell SL. Hospice utilization and outcomes among nursing home residents with advanced dementia. J Am Geriatr Soc. 2010;58(12): Kovach, C. R., Noonan, P. E., Schlidt, A. M., & Wells, T. (2005). A Model of Consequences of Need Driven, Dementia Compromised Behavior. Journal of Nursing Scholarship, 37(2), Li Q, Zheng NT, Temkin-Greener H. Quality end of life care of nursing home residents with and without dementia. JAGS. 2013; 61: Miller SC, Lima JC, Mitchell SJ. Influence of hospice among nursing home residents with advanced dementia who received Medicare-skilled nursing facility care near the end of life. J Am Geriatr Soc November ; 60(11): Mitchell, S. (2015). Palliative care of patients with advanced dementia. UpToDate. Topic Version 8.0 Mitchell SJ, Black BS, Ersek M, et al. Advanced dementia: state of the art and priorities for the next decade. Ann of Int Med. 2012; 156: HOV

16 Mitchell SJ, Kiely DK, Jones RN, Priggerson H, Volicer L, Teno JM. Advanced dementia research in nursing homes: the CASCADE study. Alzheimer Dis Assoc Disord 2006; 20(3): Mitchell SJ, Kiely DK, Miller S, Connor S, Spence C & Teno JM. Hospice care for patients with dementia. J Pain Symptom Mgt. 2007; 34(1): Mitchell SL, Miller SC, Teno JM, Kiely DK, Davis RB, Shaffer, ML. Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs. hospice eligibility guidelines. JAMA. 2010;304(17): Mitchell SJ, Morris JN, Park PS & Fries BE. Terminal care for persons with advanced dementia in the nursing home and home care settings. J Pall Med. 2004;7: Mitchell SJ, Teno J, Kiely D, et al. The clinical course of advanced dementia. NEJM. 2009; 361, Shega, J, Hougham, G, Stocking, C, Cox-Hayley, D & Sachs, G. Patients dying with dementia: Experience at the end of life and impact on hospice care. J Pain Sympt Mgt. 2008; 35(5) Shega J, Tozer C. Improving the care of people with dementia at the end of life: The role of hospice and the US experience. Dementia. 2009; 8(3): Stewart-Archer LA, Afrooz A, Toye CM, Gomez FA. Dialogue on ideal end-of-life care for those with dementia. Am J Hosp Palliat Med. Apr 29 doi: / Snyder EA, Caprio AJ, Wessell K, Lin FC, Hanson LC. Impact of a decision aid on surrogate decision-makers perceptions of feeding options for patients with dementia. JAMDA. 2013; (14) 2, Tampi, RR, Williamson, D, Muralee, S, et al. Behavioral and psychological symptoms of dementia: Part I - epidemiology, heritability, and evaluation, Clin Geriatrics. 2011; 19(5): Teno JM, Gozalo PL, Lee IC, et al. Does hospice improve quality of care for persons dying from dementia? JAGS. 2011; doi: /j x Unroe KT, Meier DE. Quality of hospice care for individuals with dementia. [Editorial] AGS. 2013; 61: Volandes AF, Paasche-Orlow MK, Barry MJ, et al. Video decision support tool for advanced care planning in dementia: Randomized controlled trial. BMJ, 2009; 338;b2159 Volicer L. End-of-life care for people with dementia in long-term care settings. Alzheimer s Care Today. 2008; April-June: Volicer, L. End-of-life Care for People with Dementia in Residential Care Settings Accessed April 25, 2014 Warden, Hurley & Volicer. (2003). Development and psychometric evaluation of pain assessment in advanced dementia (PAINAD) scale. Journal of the American Medical Directors Association; 4: HOV

Raising the Bar Creating a Dementia Capable Hospice Team. Amy McLean, ANP-BC Hospice of the Valley Dementia Program

Raising the Bar Creating a Dementia Capable Hospice Team Amy McLean, ANP-BC Hospice of the Valley Dementia Program amclean@hov.org Objectives Identify the disease-specific needs of individuals and families