E L N E C End-of-Life Nursing Education Consortium Geriatric Curriculum Module 1: Principles of Palliative Care Part I: Dying Well A natural part of life Opportunity for growth Profoundly personal experience A Good Death Defined Be free of suffering Achieve life closure Receive care consistent with one s beliefs, wishes and values 1
Concept of Suffering State of severe distress that threatens intactness of the person Failure to respond to person s needs intensifies suffering Sources of suffering Baird 2010; Ferrell & Coyle, 2008 Life Closure: A Personal Experience Completion with worldly affairs Completion of community relationships Meaning about one s individual life Love of self Love of others Life Closure: A Personal Experience (cont.) Completion of family/friend relationships Acceptance of the finality of life New self beyond personal loss Meaning about life Surrender to the unknown - Letting go 2
Dying Well Goal of Hospice and Palliative Care Ensuring good death by addressing the needs of patients and their families and promoting a high quality of life Quality of Life Model Physical Well-Being Psychological Well-Being Social Well-Being Spiritual Well-Being http://prc.coh.org Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Quality of Life Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence http://www.prc.coh.org 9 3
Physical Well-Being Pain Other symptoms Impact on family caregivers Psychological Well-Being Wide range of emotions and concerns Meaning of illness Depression Coping Cognitive assessment Social Well-Being Relationships/role description Caregiver burden Impact on family Financial concerns Sexuality concerns 4
Spiritual Well-Being Religion and spirituality Seeking meaning Hope vs. despair Importance of ritual The Goal of End-of-Life Care Goal of EOL care is a good death Addressing the multiple dimensions of quality of life helps ensure a good death Extending Palliative Care Across Settings Nurses as the constant Expanding the concept of healing Becoming educated 5
Final Thoughts.. Quality palliative care addresses quality-of-life concerns Increased nursing knowledge is essential Being with Importance of interdisciplinary approach to care Part II: Historical Context of End-of-Life Care Increase in deaths from chronic illness Medicalization of death Hospice movement Research findings Palliative care as an emerging specialty Cause of Death/Demographic and Social Trends Early 1900s Current Medicine's Focus Comfort Cure Cause of Death Infectious Diseases/ Communicable Diseases Death rate 1720 per 100,000 (1900) Average Life Expectancy Chronic Illnesses 800 per 100, 000 (2004) 50 77.7 Site of Death Home Institutions Caregiver Family Strangers/ Health Care Providers Disease/Dying Relatively Short Prolonged Trajectory Administration on Aging, 2009; Arias et al., 2003; Minino et al., 2007 6
Older Population by Age Older Population by Age: 1900-2050 - Percent 60+, Percent 65+, and 85+ 30% 25% 20% 15% 10% 5% % 60+ % 65+ % 85+ 0% 1900 1910 1920 1930 1940 1950 1960 1970 1980 1990 2000 2010 2020 2030 2040 2050 Source : Administration on Aging (2009) Retrieved January, 2009 from http://www.aoa.gov/aoaroot/aging_statistics/future_growth/docs/ Illness/Dying Trajectories Sudden Death, Unexpected Cause < 10% (MI, accident, etc.) Health Status Time Death Field & Cassel, 1997 Illness/Dying Trajectories Steady Decline, Short Terminal Phase Health Status Time Death Field & Cassel, 1997 7
Illness/Dying Trajectories Slow Decline, Periodic Crises, Death Health Status Decline Crises Time Field & Cassel, 1997 Death Illness/Dying Trajectories Lingering, Expected Death Health Status Frailty Death Time Lunney et al., 2003 Limits of Medical Technology 8
Site of Death Over 2.4 million US Deaths in 2006 Site of Death 2002 Hospital 47% Home 23% Nursing Home 22% Other 6% Hospice 2% Site of Death by Age Nursing Home 33% ages 75+ Nursing Home 42% ages 85+ CDC/NCHS www.cdc.gov/nchs Nursing Homes are Ideal Sites to Implement Palliative Care Nursing home deaths are increasingly common for the oldest old: approximately one-third of decedents aged 75 years and older died in skilled nursing facilities in 2001. www. cdc.gov.nchs/about/major/nnhsd/trendsnurse.htm Many NHs already have integrated palliative care principles Hospice providers that partner with NHs provide EOL pain & symptom management as well as psychosocial services that complement pharmacologic treatments and can address EOL distress and suffering EOL care in NHs with the addition of hospice services to usual care improve the quality of EOL care. Hanson & Ersek, 2006; Carter & Chichin, 2003; Stevenson & Bramson, 2009 Hospice and Palliative Care HOSPICE Most intense form of palliative care Less than 6 months to live Agrees to enroll in hospice program Chooses not to receive aggressive curative care PALLIATIVE CARE Ideally begins at the time of diagnosis Can be used to complement aggressive treatments NCP, 2009 9
Emergence of Palliative Care Movement began in 1980s, gaining momentum throughout the 1990s Goal: to move hospice care upstream Hospices expanded services Academic palliative care programs were instituted NCP, 2009; www.capc.org Definition of Palliative Care Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care. NCP, 2009; NQF, 2006 Palliative Care: Continuum of Care Death Disease-Modifying Treatment Palliative Care Hospice Care Bereavement Support Terminal Phase of Illness NCP, 2009; NQF, 2006 10
Room for Improvement Despite progress, there is room for improvement in EOL care for older adults Part III: Hospice 101 Definition of Hospice Program of care Comprehensive medical & support services Care provided in many settings, primarily home, LTC facilities Unit of care: patient and family Promotes the idea of living until you die NHPCO, 2009 Medicare Hospice Benefit (MHB) Initiated in 1983; extended to nursing home residents in 1989 80% of hospice patients are > 65 yrs, so most hospice care is paid for by MHB MHB pays per diem rate to cover all expenses r/t terminal illness 11
Hospice Medicare Benefit Eligibility Criteria: Eligible for Medicare, part A Terminal illness life expectancy of six months or less, Patient chooses to receive hospice care rather than curative treatments Patient enrolls in a Medicare-approved hospice program http://www.nhpco.org Hospice Includes: Interdisciplinary team, often led by a nurse case manager Physician services (although PCP generally directs medical care through hospice team) Medical appliances and supplies Drugs for symptom management and pain relief http://www.nhpco.org Hospice Interdisciplinary Team (IDT) Homemakers, home health aides Nurses Physicians Chaplains Social workers Volunteers Bereavement counselors Speech, OT and PT http://www.nhpco.org 12
Hospice Services Regular, scheduled visits to provide holistic EOL care 24/7 availability to answer questions, solve problems, make visits Coaches caregivers Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time Emotional and spiritual support to older adults and family Bereavement services to survivors Limitations of Traditional Hospice Programs Originally, served mostly individuals with advanced cancer Focused on last 6 months of life Primary care setting: private homes Individuals were required to forego all curative therapies for eligibility Hospice Today Over 4850 hospice programs in the US Average length of stay in hospice is 20 days In 2008: 22% of hospice care was in nursing homes 38.5% of all deaths in the US were under the care of a hospice program In 2008: 61.7% of hospice admissions were non-cancer diagnosis. NHPCO, 2009 13
Hospice for Patients with Advanced Dementia Only 11% of nursing home residents with advanced dementia are referred to hospice < 1% of hospice patients have primary diagnosis of dementia Mitchell et al., 2004a, 2004b & 2005 Eligibility: One or more dementia-related complications in past year Upper respiratory infection Septicemia Multiple pressure ulcers, stage 3-4 Fever recurrent after antibiotics Aspiration pneumonia Insufficient fluid/food intake with 10% weight loss in prior 6 months or serum albumin < 2.5 gm/dl Hospice Care in Nursing Homes MHB extended to NH residents in 1989 Hospice associated with better pain management and lower rates of EOL hospitalization Recent study found no differences in family satisfaction or unmet needs between hospice and nonhospice residents Stevenson & Bramson, 2009 14
Evidence of Deficiencies in EOL Care in Nursing Homes Pain assessment & management is inadequate, especially for nonwhite residents and those with cognitive impairment Families report less satisfaction with EOL in NHs than in hospice settings Only 58% of bereaved family members reported loved one experienced a good death Oliver et al., 2004; Teno et al., 2004 Hospice Benefits to Facility Interdisciplinary team to manage the hospice Plan of Care for resident and family Availability of professional staff 24/7 for optimal pain and symptom management Decreases likelihood of disruptive transfers to hospitals Provides in-service training to facility staff on hospice care Additional staff (home health aides) to assist with resident's personal care Hospice Can Enhance EOL Care in Nursing Facilities The combined strengths of facility staff and hospice can create highest quality, most compassionate care for residents and their families. 15