CENLE End-of-Life Nursing Education Consortium Module 1: Principles of Palliative Care Geriatric Curriculum Fairfield University Quinnipiac University School of Nursing ELDER Project “Supported by DHHS/HRSA/BHPR/Division of Nursing Grant#D62HP06858”

EELLNNEECC Geriatric Curriculum Objectives: Upon completion of this session, the participant will be able to… 1. Discuss the concept of “dying well” and how it applies to end-of-life (EOL) care.1. Discuss the concept of “dying well” and how it applies to end-of-life (EOL) care. 2. Compare and contrast the concepts of palliative care and hospice care.2. Compare and contrast the concepts of palliative care and hospice care. 3. Describe the role of the health care team in providing quality palliative care for elder patients in various care settings.3. Describe the role of the health care team in providing quality palliative care for elder patients in various care settings.

EELLNNEECC Geriatric Curriculum Group Activity…. What is your definition of “dying well”?

EELLNNEECC Geriatric Curriculum “Dying Well” A natural part of lifeA natural part of life Opportunity for growthOpportunity for growth Profoundly personal experienceProfoundly personal experience

EELLNNEECC Geriatric Curriculum A “Good Death” Defined Be free of sufferingBe free of suffering Achieve life closureAchieve life closure Receive care consistent with one’s beliefs, wishes and valuesReceive care consistent with one’s beliefs, wishes and values

EELLNNEECC Geriatric Curriculum Concept of Suffering State of severe distressState of severe distress Threatens intactness of the personThreatens intactness of the person Highly personalHighly personal Depth variesDepth varies Can lead to finding meaningCan lead to finding meaning Baird 2010; Ferrell & Coyle, 2008 Baird 2010; Ferrell & Coyle, 2008

EELLNNEECC Geriatric Curriculum Sources of Suffering Fear of physical distressFear of physical distress Perceptions of selfPerceptions of self Concerns regarding family relationships & social rolesConcerns regarding family relationships & social roles Practical matters in a person’s lifePractical matters in a person’s life Past experiencesPast experiences

EELLNNEECC Geriatric Curriculum A client is dying. Which of the following statements indicates that the healthcare worker understands the concept of suffering? a.“Most people have many sources of suffering.” b.“Suffering leads to finding a deeper meaning in life.” c.“You will be able to determine what is causing your husband’s suffering.” d.“Your husband’s suffering is related to the amount of pain he is in.”

EELLNNEECC Geriatric Curriculum Life Closure: A Personal Experience Completion with worldly affairsCompletion with worldly affairs Completion of community relationshipsCompletion of community relationships Meaning about one’s individual lifeMeaning about one’s individual life Love of selfLove of self Love of othersLove of others

EELLNNEECC Geriatric Curriculum Life Closure: A Personal Experience (continued) Completion of family/friend relationshipsCompletion of family/friend relationships Acceptance of the finality of lifeAcceptance of the finality of life New self beyond personal lossNew self beyond personal loss Meaning about lifeMeaning about life Surrender to the unknown - “Letting go”Surrender to the unknown - “Letting go”

EELLNNEECC Geriatric Curriculum 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

EELLNNEECC Geriatric Curriculum Quality of Life Model Physical Well-BeingPhysical Well-Being Psychological Well-BeingPsychological Well-Being Social Well-BeingSocial Well-Being Spiritual Well-BeingSpiritual Well-Beinghttp://prc.coh.org

EELLNNEECC Geriatric Curriculum Quality of Life Model Group Exercise… PHYSICAL PSYCOLOGICAL Quality of Life SOCIAL SPIRITUAL

Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Quality of Life Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence 14

EELLNNEECC Geriatric Curriculum The agency is planning a discussion on the idea of healing. Which of the following statements should be included? a. Healing is a medical outcome and the discussion should be directed by doctors. b.Healing can occur only after the client’s spiritual issues have been resolved with a chaplain. c.Healing is possible if attention is paid to the many things that influence a person’s quality of life. d.Healing occurs when the patient and family accept that a cure is not possible.

EELLNNEECC Geriatric Curriculum Early identification … …means palliative care can start sooner, allowing the patient and the family to set and achieve goals and expand the concept of healing.…means palliative care can start sooner, allowing the patient and the family to set and achieve goals and expand the concept of healing.

EELLNNEECC Geriatric Curriculum The Goal of End-of-Life Care Goal of EOL care is a “good death”Goal of EOL care is a “good death” Addressing the multiple dimensions of quality of life helps ensure a “good death”Addressing the multiple dimensions of quality of life helps ensure a “good death”

EELLNNEECC Geriatric Curriculum All of the following behaviors improve the quality of end-of-life care Except a.limit client transfers when possible b.standardize protocols for dying patients and families c.promote continuity of care d.delay referral to hospice

EELLNNEECC Geriatric Curriculum Cause of Death/Demographic and Social Trends Administration on Aging, 2009; Arias et al., 2003; Minino et al., 2007

EELLNNEECC Geriatric Curriculum Nursing Homes are Ideal Sites to Implement Palliative Care Approximately one-third of decedents aged 75 years and older died in skilled nursing facilities in 2001Approximately 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 Palliative care principles have been integratedPalliative care principles have been integrated Hospice providers provide:Hospice providers provide: EOL pain & symptom management EOL pain & symptom management Psychosocial services Psychosocial services Address EOL distress and suffering Address EOL distress and suffering Improve the quality of EOL careImprove the quality of EOL care Hanson & Ersek, 2006; Carter & Chichin, 2003; Stevenson & Bramson, 2009

EELLNNEECC Geriatric Curriculum Hospice and Palliative Care HOSPICEHOSPICE Most intense form of Most intense form of palliative care palliative care Less than 6 months to live Less than 6 months to live Agrees to enroll in hospice Agrees to enroll in hospice program program Chooses not to receive Chooses not to receive aggressive curative care aggressive curative care Unit of care: patient & family Unit of care: patient & family Promotes idea of “living Promotes idea of “living until you die” until you die” PALLIATIVE CAREPALLIATIVE CARE Ideally begins at the time Ideally begins at the time of diagnosis of diagnosis Can be used to Can be used to complement aggressive complement aggressive treatments treatments Enhance quality of life Enhance quality of life Optimize function Optimize function Help with decision making Help with decision making Provide opportunities for Provide opportunities for growth growth

EELLNNEECC Geriatric Curriculum Emergence of Palliative Care Movement began in 1980s, gaining momentum throughout the 1990sMovement began in 1980s, gaining momentum throughout the 1990s Goal: to move hospice care “upstream”Goal: to move hospice care “upstream” Hospices expanded servicesHospices expanded services Academic palliative care programs were institutedAcademic palliative care programs were instituted NCP, 2009;

EELLNNEECC Geriatric Curriculum Palliative Care: Continuum of Care Disease-Modifying Treatment Hospice Care Bereavement Support Palliative Care Terminal Phase of Illness Death NCP, 2009; NQF, 2006

EELLNNEECC Geriatric Curriculum Palliative care… can be given with life-prolonging treatment or as a main focus of care. can be given with life-prolonging treatment or as a main focus of care. It is best provided by an interdisciplinary team which can more comprehensively identify the physical, psychological, social and spiritual burdens of illness. It is best provided by an interdisciplinary team which can more comprehensively identify the physical, psychological, social and spiritual burdens of illness.

EELLNNEECC Geriatric Curriculum Which of the following comments shows a principle of palliative care? a.“We’re busy because most people prefer to die in a hospital rather than at home where they would be a burden.” b.“Death and dying are not discussed much here in order to maintain hope for patients and families.” c.“Because our patients often are uncomfortable, they need physical care more than psychological or spiritual care.” d.“Patients are eligible for palliative care even though they are also receiving curative treatment.”

EELLNNEECC Geriatric Curriculum Interdisciplinary Care Team Exercise What do you feel you contribute to the ICT by your professional knowledge and experience?What do you feel you contribute to the ICT by your professional knowledge and experience? What do you feel you contribute to the ICT by your personal knowledge, experience and uniqueness?What do you feel you contribute to the ICT by your personal knowledge, experience and uniqueness?

EELLNNEECC Geriatric Curriculum Hospice Medicare Benefit Eligibility Criteria: Eligible for Medicare, part AEligible for Medicare, part A Terminal illness  life expectancy of six months or lessTerminal illness  life expectancy of six months or less Choose to receive hospice care rather than curative treatmentsChoose to receive hospice care rather than curative treatments Enrolls in a Medicare-Enrolls in a Medicare- approved hospice program approved hospice program

EELLNNEECC Geriatric Curriculum Hospice Includes: Interdisciplinary team, often led by a nurse case managerInterdisciplinary team, often led by a nurse case manager Physician services (although PCP generally directs medical care through hospice team)Physician services (although PCP generally directs medical care through hospice team) Medical appliances and suppliesMedical appliances and supplies Drugs for symptom management and pain reliefDrugs for symptom management and pain relief

EELLNNEECC Geriatric Curriculum Hospice Services Regular, scheduled visitsRegular, scheduled visits 24/7 availability24/7 availability Coaches caregivers (family and staff in residential settings)Coaches caregivers (family and staff in residential settings) Short-term inpatient care for symptom management or respite careShort-term inpatient care for symptom management or respite care Emotional and spiritual supportEmotional and spiritual support Bereavement services to survivorsBereavement services to survivors

EELLNNEECC Geriatric Curriculum Hospice Today Over 4850 hospice programs in the USOver 4850 hospice programs in the US Average length of stay in hospice is 20 daysAverage length of stay in hospice is 20 days In 2008: 22% of hospice care was in nursing homesIn 2008: 22% of hospice care was in nursing homes 38.5% of all deaths in the US were under the care of a hospice program38.5% 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.In 2008: 61.7% of hospice admissions were non-cancer diagnosis. NHPCO, 2009

EELLNNEECC Geriatric Curriculum Hospice Benefits to Facility CAN YOU IDENTIFY ANY BENEFITS HOSPICE CARE CAN BRING TO YOUR FACILITY?CAN YOU IDENTIFY ANY BENEFITS HOSPICE CARE CAN BRING TO YOUR FACILITY?

EELLNNEECC Geriatric Curriculum Hospice Benefits to Facility Expertise in EOL care / symptom managementExpertise in EOL care / symptom management 24/7 consultation with hospice team24/7 consultation with hospice team Decreases likelihood of disruptive transfers to hospitalsDecreases likelihood of disruptive transfers to hospitals Provides in-service training to facility staffProvides in-service training to facility staff Additional staff (home health aides) to assist with resident's personal careAdditional staff (home health aides) to assist with resident's personal care

EELLNNEECC Geriatric Curriculum Experiences Caring for Dying Patients Think about the first time you cared for a patient who died. What was that experience like for you?

EELLNNEECC Geriatric Curriculum CAN YOU RELATE? “The sense of satisfaction to help someone makes me feel good about what I do. To me, the most important thing that a Nursing Assistant should do is just to be with the patient. The best thing is just to accept them and be with them, no matter what you happen to be doing.”“The sense of satisfaction to help someone makes me feel good about what I do. To me, the most important thing that a Nursing Assistant should do is just to be with the patient. The best thing is just to accept them and be with them, no matter what you happen to be doing.” -Renee Meyer, CNA, CHPNA Source: Nursing Assistant Computerized Education Program

EELLNNEECC Geriatric Curriculum References City of Hope & the American Association of Colleges of Nursing, 2007; Revised, The End- of-Life Nursing Education Consortium (ELNEC)- Geriatric Training Program and Curriculum is a project of the City of Hope (Betty R. Ferrell, PhD, FAAN, Principal Investigator) in collaboration with the American Association of Colleges of Nursing (Pam Malloy, RN, MN, OCN, Co-Investigator). “Supported by DHHS/HRSA/BHPR/Division of Nursing Grant # D62HP06858”