3/20/2019

No conflicts or disclosures

Core Curriculum MODULE 1 PALLIATIVE NURSING CARE

ELIZABETH LOGGERS, MD, PHD ASSOCIATE MEMBER, FRED HUTCHINSON RESEARCH CENTER

MEDICAL DIRECTOR, SEATTLE CANCER CARE ALLIANCE

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World Death Rate Holding Steady At 100 Percent Lecture Overview

News • survival • ISSUE ILLNESS IN AMERICA DEATH WITH DIGNITY ➢ Barriers to high quality end of ➢ What is it? How does it 31•02 • Jan 22, 1997 life (EOL) care GENEVA, SWITZERLAND— compare to Palliative Care? World Health Organization PALLIATIVE CARE (PC) ➢ Epidemiology officials expressed ➢ What is it? disappointment Monday at ➢ Epidemiology OVERVIEW AND CLOSING the group's finding that, despite the enormous efforts ➢ Evidence for PC, HOSPICE CARE of doctors, rescue workers ➢ Best practices ➢ What is it? How does it and other medical ➢ Nurses role professionals worldwide, the compare to Palliative Care? global death rate remains ➢ Epidemiology constant at 100 percent.

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U.S. Deaths of All Ages Combined The Facts About Dying in America Today

1. Heart disease (611,105) 6. Alzheimer’s (84,767) 70% of those who die each year are 65 years of age 2. Malignant neoplasm 7. Diabetes mellitus or older (584,881) (75,578) Majority occur after a long, progressively 3. Chronic lower 8. Influenza & pneumonia debilitating chronic illness, such as Respiratory (149,205) (56,979) ➢ Cancer 4. Unintentional 9. Nephritis (47,112) ➢ Cardiac disease ➢ Renal disease injury/accidents 10. Suicide (41,149) (130,557) ➢ Lung disease 5. Cerebrovascular (128,978) CDC, 2015 CAPC, 2015; Coyle, 2015

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Illness/Dying Trajectories Sudden Death, Illness/Dying Trajectories Unexpected Cause Chronic Illness, Periodic Crises, Death

< 10% (MI, accident, etc.)

Decline

Crises

Health Status Death Death Field & Cassel, 1997 Time Time Field & Cassel, 1997

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Illness/Dying Trajectories Illness/Dying Trajectories, Progressive Steady Decline, Short Terminal Phase Deterioration Expected Death

Frailty Health Status

Death Health Status Death

Time Lunney et al., 2003 Time Field & Cassel, 1997

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Serious Illness in America: It’s Impact on Care Burdensome Transitions 2000-2009

90M live with serious illness Deaths in acute care hospitals decreased from 32.6% to 24.6% Hospice use increased from Exploding healthcare costs 21.6% to 42.2% BUT… ➢ Mean number of health care Poor understanding of prognosis transitions in the last 90 days increased from 2.1 to 3.1 ➢ ICU use in the last month of life Failure to treat and other symptoms increased from 24.3% to 29.2% ➢ 28.4% used hospice for 3 days or less and 40.3% of late hospice admissions Increased use of technology were preceded by an ICU stay.

Lui et al., 2014; Meier, 2010; Munro, 2014 Teno, et al. JAMA, 2013, 309(5):470-7.

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Toll of Death and Dying on Patients & Families/Caregivers

Patients fear they will be a Older adults may be cared 30% of cancer patients report fair or poor health physical and financial burden for by an aged spouse who is 58% have functional limitations If “nothing more can be also ill done,” will healthcare Older children caring for a Up to 90% have fatigue providers abandon them? parent may also have acute 33-5% have pain from the illness, it’s treatment or How do families and or chronic illness(es) other co-morbidities caregivers adjust to role changes? Psychological distress ranges from 29-43% Many drain life savings Caregiver and patient distress parallel each other and and/or go bankrupt to cover may be bidirectional medical costs Institute of Medicine, Cancer Care for the Whole Patient, 2008. Given et al., 2012

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Overview of Caregivers: Barriers to Quality Care at the End of Life Their Commitment and The Cost Failure to acknowledge the limits of medicine Workforce that is too small to meet demands Over 65.7 million 40% of women and 26% Lack of training for healthcare providers adults provide of men caregivers report Hospice/palliative care services are poorly unpaid care to emotional strain understood sick/disabled adults Cost of uncompensated Rules and regulations Average of 20 hours care = $450 B/year Denial of death a week ➢ Failure to acknowledge the limits of medicine ❖ Weeks, et al, found that 69% of lung cancer patients and 81% of colon cancer patients with stage IV disease did not report that Most are women in their chemotherapy was not at all likely to cure their cancer their mid/late 40s, Lack of payment models linked to quality working full-time measures Family Caregiver Alliance, 2012; RAND, 2014 CAPC, 2015; NHPCO, 2014a & 2015, Weeks, et al, NEJM, 2012.

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Changes Must Be Made: Development of What is Palliative Care? Standards to Guide Practice

Institute of Medicine National Consensus Project (NCP) for Quality Palliative Care National Quality Forum The Joint Commission

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Palliative Care: Bridge Repair WHO Definition of Palliative Care

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: ➢ provides relief from pain and other distressing symptoms; ➢ affirms life and regards dying as a normal process; ➢ intends neither to hasten or postpone death; ➢ integrates the psychological and spiritual aspects of patient care; ➢ offers a support system to help patients live as actively as possible until death; ➢ offers a support system to help the family cope during the patient’s illness and in their own bereavement; ➢ uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated; ➢ will enhance quality of life, and may also positively influence the course of illness; ➢ is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Ref: National cancer control programmes: policies and managerial guidelines, 2nd ed. Geneva, World Health Organization, 2002. https://getpalliativecare.org/palliative-care-bridge/

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NCP and NQF: 8 Domains of Palliative Care Bridge Repair Palliative care is specialized medical care for people with serious illnesses. Structure and processes of care It focuses on providing patients with relief from the symptoms and stress of a serious illness. Physical aspects of care

The goal is to improve quality of life for both the patient and the family. Psychological and psychiatric aspects of care Social aspects of care Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide Spiritual, religious, and existential aspects of care an extra layer of support. Cultural aspects of care It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. Care of the patient at the end of life

Ethical and legal aspects of care http://getpalliativecare.org/whatis/ NCP, 2013

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Characteristics of Palliative Care Philosophy Stop and Consider and Delivery Which of the following patients could Interdisciplinary care benefit from palliative care? A. 64-year-old with congestive heart failure, Excellent communication between patients, families, health hypertension and diabetes care providers B. 32-year-old with acute myelogenous Services provided concurrently with or independent of leukemia curative/life‐prolonging care C. 57-year-old with newly diagnosed Hopes for peace and dignity are supported throughout the amyotrophic lateral sclerosis course of illness and pre-post dying process D. 76-year-old with Parkinson’s disease

NCP, 2013

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Snapshot of Palliative Care in the US Today Prevalence of Palliative Care in US Hospitals: 2000-2011

90% of hospitals with 300 beds or more have palliative care teams

90% of Catholic-affiliated hospitals provide palliative care

96% of teaching hospitals have palliative care teams

US southern states fall behind in providing palliative care

23% of for-profit hospitals provide palliative care

CAPC, 2015 Center for Advance Palliative Care 2013

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Where is Palliative Care Provided Does Palliative Care Improve Care, Decrease and How is it Paid For? Hospitalizations & Save Money?

Palliative care is provided: Sutter Health: Advanced Illness Management ➢ Hospital/Inpatient consult (AIM) for those with serious illness ➢ Outpatient clinical setting Improved home care, leading to less ER visits – Free standing clinics Improved patient, family, physician satisfaction – Embedded within specialty environments 54% fewer hospital admissions ➢ “Home” 80% reduction in ICU days Palliative care is paid for by: 26% reduction in inpatient LOS (2 days) 52% decrease in clinic visits, 60% increase in hospice enrollment ➢ Billing Result: Saving>$700 per member/month ➢ Subsidies across departments ➢ Philanthropy Hughes & Smith, 2014

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5 Randomized Trials including Cancer Patients Early Palliative Care for Lung Cancer

✓ No harm in any trial

✓ Better patient understanding ✓ Improved satisfaction, communication ✓ More advance directives ✓ Better symptom control and quality of life ✓ Lower costs ✓ Higher quality of EOL care ✓ Fewer readmissions, ED and ICU use; longer hospice LOS; increase in home death Higginson IJ, e al. Cancer J. 2010; 16(5):423-435 ✓ Better survival Parikh, N Engl J Med 369;24 December 12, 2013 Temel, et al. NEJM. 2010; 363:733-742.

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Earlier Palliative Care Consults: Lengthening Life Larger Cost-Saving Effect Temel, et al: Bakitas ENABLE III phone based PC intervention Connor, et al: ➢ Mean survival was 29 This is equivalent to Palliative care Palliative care days longer for hospice a 14% and 24% consult within 6 days consult within 2 days reduction, patients than for non- of admission: of admission: respectively, in the Savings $1,312 Savings $2,280 hospice patients cost of hospital stay – Statistically significant for CHF, lung and pancreatic cancer Connor SR, et al. J Pain Symptom Manage. 2007;33(3):238-46. Temel, et al. NEJM. 2010; 363:733-742. Bakitas, et al. JCO. 2015;1438-1445 May et al., 2015

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COST Primary Versus Specialty Palliative Care AVOIDANCE AND SAVINGS Primary palliative care is the care that each of you provide daily ➢ “The basic skills and competencies required of all physicians and other health ASSOCIATED care professionals.”

WITH Secondary palliative care PALLIATIVE ➢ Palliative care provided by board-certified palliative medicine physicians or other certified clinicians CARE ➢ May include (e.g.): – More complex goals of care conversations, psychosocial dynamics and mood Different PC assessments interventions, – Legacy and bereavement counseling – Care of the imminently dying different – Terminal extubation populations but – Palliative sedation the outcomes tend to be similar Tertiary palliative care across studies. ➢ “Care provided at tertiary medical centers where specialist knowledge for the most complex cases is researched, taught, and practiced.” Hughes MT, Smith TJ. The growth of palliative care in the United States. Annu Rev Public Health. 2014 Mar 18;35:459-75 Weissman DE, et al, J of Palliative Medicine, 2011. 14(1):1-7.

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What is Hospice? Hospice versus Palliative Care

Palliative Care is the “umbrella” term ➢ Care can be provided at any point in illness – concurrent with aggressive and curative treatments

Hospice is a subset of Palliative Care ➢ Interdisciplinary care provided in the last six months of life – Patient must forgo treatments with curative intent

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Hospice Care Hospice Includes:

In US, hospice is largely defined by the Medicare Hospice Interdisciplinary care Benefit ➢ Counseling ➢ Medicare pays for 84% of hospice recipients ➢ Spiritual care ➢ Volunteer services ➢ 93% of are Medicare-certified ➢ – 34% are not for profit, 60% are for-profit, 5% government (federal, state or Bereavement services local) – “Volunteer” hospices • Medical appliances and supplies • Drugs for symptom and pain relief • Short-term inpatient, residential and/or respite care

1 http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-andReports /NationalHealthExpendData/ • Homemaker/home health aide Downloads/highlights.pdf 2. http://www.medpac.gov/chapters/Mar12_Ch11.pdf

http://www.nhpco.org

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Hospice Locations Primary Hospice Admission Diagnosis

66.4% of hospice patients die at “home” – 97.1% of hospice patient care days were “routine home care” in 2011 ❖Continuous home care (0.4%) ❖General inpatient care (2.2%) ❖Respite care (0.3%) Hospice can be provided in hospital, nursing home, adult family home, etc

National Hospice and Palliative Care, Facts and Figures on Hospice Care, 2012

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Average and Median Length of Hospice Death with Dignity Service by Year

National Hospice and Palliative Care, Facts and Figures on Hospice Care, 2012

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DWD Nationally What is Death with Dignity (DWD)?

Allows physicians to prescribe a lethal dose of oral medication Access to physician assisted suicide is growing to a competent, adult patient with a terminal illness and life expectancy of 6 months or less Neither palliative care, nor hospice Legal process with safeguards: ➢ Single behavior/act within a larger context ➢ Includes written and oral patient requests and 15 day waiting period ➢ Controversial due to ethical concerns with an opportunity to rescind the request ➢ Patient must self-administer the medication ➢ Clinician confirms that the patient is competent, informed, and acting voluntarily – Clinician recommends the patient notify next of kin, have someone present at the ingestion and not take medication in a public place

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WA State DWD Participants DWD Participants in Washington State, 2013

Of all participants: ➢ Most (77%) have cancer ➢ 97% white, non-Hispanic ➢ 52% married and 76% have some college education ➢ 44% were 75 years or older ➢ 91% cite loss of autonomy; 89% cite inability to engage in activities that make life enjoyable Of those who ingested medication in 2013: ➢ 84% were at home ➢ 86% were enrolled in hospice

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SCCA Experience Overview

114 individuals inquired about DWD between March 2009 and December 2011 44 (38.6%) did not pursue DWD 30 (26.3%) initiated but did not continue or died ➢ 40 (35.1%) received the lethal prescription – 24 (60% of those receiving prescriptions, 21.1% of those inquiring) took the medication ❖ 15.7% of all DWD participants in Washington state (N=255, 78% with cancer diagnoses) ❖ Approximately 2% of all deaths state-wide and at SCCA during the same period

Loggers, NEJM, 2013, 368(15):1417-1424.

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Continuum of Care Current Practice of Palliative Care and Hospice Death

Disease-Modifying Treatment Hospice Care Curative Palliative Bereavement Treatment Care Hospice Palliative Care Support

Terminal Phase of Illness

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Quality-of-Life Model http://prc.coh.org Prognostication Physical Psychological Functional Ability Anxiety Strength/Fatigue Depression Sleep & Rest Enjoyment/Leisure Consists of 2 parts: Nausea Pain Distress ➢ Foreseeing (estimating prognosis) Appetite Happiness ➢ Foretelling (discussing prognosis) Constipation Fear Pain Cognition/Attention Quality of Life Performance status ➢ Karnofsky – ECOG poor predictors, multiple Social Spiritual Financial Burden Hope symptoms, biological markers (e.g. albumin) Caregiver Burden Suffering ➢ “Would I be surprised if this patient died in the next Roles and Relationships Meaning of Pain 6 months?” Affection/Sexual Function Religiosity Hui, 2011; Lynn et al., 2007 Appearance Transcendence

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Hope for the Best…Prepare for the Worst What is a Good Death?

Hope for the best Steinhauser identified 6 principles: ➢ Review treatments that may prolong life and ➢ Pain and symptom management relieve suffering ➢ Clear decision making Prepare for the worst ➢ Preparation for death ➢ Completion ➢ What would be left undone? ➢ Contributing to others ➢ Who would make decisions if you could not make ➢ Affirmation of the whole person them? ➢ What would your wishes be regarding aggressive treatments, such as resuscitation? Quill et al., 2014 Steinhauser KE, et al. Ann Intern Med. 2000; 132(10):825-32. Core Steinhauser KE, et al. JAMA. 2000; 284:2476-2482. Core

Maintaining Hope in the Midst of Death Lessons Learned in Managing Barriers

Experiential processes Give providers “the language” Build collaborative relationships with palliative care Remember team Spiritual the processes Institute automatic triggers for palliative care caregiver consult

Lindvall et al., 2014 Rational Relational thought processes processes Cotter & Foxwell, 2015

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Nurses Play a Major Role in Caring for Role of the Nurse in Improving Palliative Care Seriously Ill Patients and Their Families

Elicit goals of care Maintaining a realistic perspective Assess, manage, coordinate care ➢ Some things cannot be “fixed” ➢ Focus on patient and family Listen Use of therapeutic presence Bear witness Facilitating communication and education Communicate with team Promoting multi and interdisciplinary care ➢ Refer to palliative care or become a PC provider yourself Knowledgeable in evidence-based practice Supporting your colleagues

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Final Thoughts….. “You matter because you are you. Quality palliative care addresses quality-of-life You matter to the last moment of your concerns life, and we will do all we can, not Increased nursing knowledge is essential only to help you die peacefully, but to “Being with” live until you die” Importance of interdisciplinary approach to care Dame Cicely Saunders Founder of St. Christopher’s Hospice London, England

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Resources for Palliative Care

Thank you! Primer of Palliative Care ➢ AAHPM.org Hospice and Palliative Nursing Association (HPNA.org) Center to Advance Palliative Care (capc.org) Assessment Scales and other Tools ➢ City of Hope Pain & Palliative Care Resource Center (prc.coh.org) National Palliative Care Research Center

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Resources for Supporting Conversations Palliative Care at UWMC

Aging with Dignity—Five Death Over Dinner Wishes, My Wishes, and DeathWise Cambia Palliative Care Center of Excellence Voicing My Choices ➢ Director: Randy Curtis; Co-Director: Tony Back Engage with Grace ➢ See: https://depts.washington.edu/pallcntr/ Before I Die Honoring Choices Community Palliative Care Services Minnesota ➢ UWMC Conversations on Life Before Death: The – Lu Marchand, Medical Director for Inpatient Palliative Care, UWMC Compassionate Care and – Harborview Lien Foundation ❖ Compassion and Support Inpatient service, Wayne McCormick and Tony Back National Healthcare – New inpatient PC services starting at Northwest and Valley The Conversation Project Decisions Day Long standing services at the VA (David Gruenwald) Death Café Project Compassion and Children’s (Ross Hayes)

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Palliative Care at SCCA Hospices Seattle Metro Area

Typically geographically distributed Molly Bumpus Arnold, ARNP, ACHPN ➢ Largest in the metro-area include: – Providence (King, Snohomish) Meagan Blazey, ARNP – Evergreen (King, Snohomish) Judy Fihn, RN, CHPN – Franciscan (King, Kitsap and Pierce counties) – Multi-Care/Good Samaritan (King, Pierce) Jodie David, RN In-patient (typically short stays of 5 days or less) hospice Johanna Surla, RN facilities ➢ Evergreen ➢ Franciscan Elizabeth Loggers, MD, PhD, Medical Director ➢ Hospice of Kitsap County Elizabeth Stohr, MSN, RN, Operations Manager There are currently no residential hospice facilities To find a hospice or palliative care provider in your area: Petr Horak, Program Manager ➢ https://wshpco.org/directory-search/

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Historical view… More recently… 1980s: Hospice care, usually emphasizing home care, expands throughout the United States. Middle Ages: Religious orders establish “hospices” at key crossroads on the way to Hospices begin to care for people with advanced AIDS. religious shrines for pilgrims. 16th-18th Centuries: Religious orders care for the dying and destitute locally. 1984: Medicare adds a hospice benefit. 1800s: Madame Garnier of Lyon, France opens a “calvaire” to care for the dying. 1994: Project on Death in America (Open Society, George Soros), SUPPORT study 1879: Mother Mary Aikenhead, Irish Sisters of Charity, opens Our Lady’s Hospice in 1996: ICD9 code for palliative or terminal care. Dublin. William Munk,MD, writes “Euthanasia, or medical treatment in aid of easy 1997: Institute of Medicine (IOM): Approaching Death in America: Improving Care at the death.” End of Life (Field & Cassel) 1935-present: Interest grows in the psychosocial aspects of dying and bereavement, 2001: ELNEC presented to 100 nurses in Pasadena, CA sparked by the work of Lindemann, Kubler-Ross, others. 1952: opens first home for sick and dying, Nirmal Hriday (Pure Heart) in 2005: Last Acts, RWJF national program which started in 2002, ends Kalighat 2006: American Board of Medical Specialties begins board certification and ACGME 1957-67: Cicely Saunders, works at St. Joseph’s Hospice, pioneered use of opioid accreditation analgesics given “by the clock” 2010: Temel, et al, publish survival benefit to early PC in NSCLC (NEJM) 1965: Zelda Foster, SW at a Veterans Hospital wrote of the “conspiracy of silence” for 2012: ASCO provisional clinical opinion recommending early palliative care for metastatic inpatients facing death disease and any patient with a significant symptom burden 1967: Saunders opens St. Christopher’s Hospice emphasizing multi-disciplinary care 2014: IOM Report: Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2016: El-Jawahri publishes benefit to inpatient palliative care for stem cell transplantation Adapted from http://www.hospiceworld.org/history.htm

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