Palliative Care Across the Continuum of Illness: An Introduction to Palliative Care Melissa Schepp, MD Director, Palliative Care St. Joseph’s Hospital, Atlanta GA

LEARNING OBJECTIVES Identify the principles of Palliative Care Understand how Palliative Care applies across the spectrum of illness

Definition of Palliative Care (National Quality Forum) Palliative Care refers to patient- and family- centered care that optimizes quality-of-life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice

Palliative care comes from the word “palliate”, which means to ease.

What Is Palliative Care? Specialty (ABMS 2008) Addresses quality of life for seriously ill patients and their families Covers a spectrum of care which encompasses  Multiple disciplines (MD, Nurse, Chaplain, SW)  Alleviation of symptoms  Assistance with information sharing/decision making  Coordination of resources

OLD VS NEW APPROACH Palliative Care Medicare Hospice Benefit Bereavement Disease Progression Diagnosis of serious illnessDeath Life Prolonging Care Hospice Care Life Prolonging Care Old New

PALLIATIVE CARE VS HOSPICE All of hospice is palliative care, but not all of palliative care is hospice Palliative Care Hospice

Palliative Care, Why? #1 Reason Medical Progress… …has changed the way we live …has changed the way we are sick …has changed the way we die

Modern End of Life=Protracted Course 85% of people in the US will experience one of these trajectories at the “end of life”  20% Cancer  25% Organ Failure  40% Dementia/Frailty Average American 2-4 years of disability before death

CURRENT NEEDS OF SERIOUSLY ILL PATIENTS and THEIR FAMILIES High degree of unmanaged or under- managed symptoms in patients with chronic and/or debilitating illnesses Poor to non-existent communication regarding patient goals of care Lack of coordination with patient and family preferences-need for advanced care planning

International Comparison of Spending on Health, 1980–2006 Average spending on health per capita ($US PPP) Total expenditures on health as percent of GDP Data: OECD Health Data 2008 (June 2008).

Inpatient Hospital Spending per Capita a b a 2003 b 2002 b a Source: The Commonwealth Fund, calculated from OECD Health Data Adjusted for Differences in Cost of Living

16 High Spending: Poor Outcomes Mortality Amenable to Health Care Deaths per 100,000 population* * Countries’ age-standardized death rates before age 75; including ischemic heart disease, diabetes, stroke, and bacterial infections. Data: E. Nolte and C.M. McKee, "Measuring the Health of Nations: Updating an Earlier Analysis," Health Affairs Jan.- Feb. 2008, 27(1):58-71 analysis of World Health Organization mortality files. Source: Commonwealth Fund National Scorecard on U.S. Health System Performance, 2008.

FINANCIAL IMPACT OF CURRENT MODEL OF CARE Major financial crisis  Locally  Nationally

WHAT SERIOUSLY ILL PATIENTS WANT Appropriate treatment of pain and other symptoms Achieve a sense of control Communication regarding their care Coordinated care throughout the course of illness Avoid inappropriate prolongation of the dying process Relieve burdens on family Strengthen relationships with loved ones Sense of safety in the healthy care system

Hospital-Based Palliative Care Growth ( ) 658(24.5%)  168(63%)= 138% (Hospitals over 50 beds) 85% of hospitals with >300 beds More likely in not-for-profit hospitals *Growth of Palliative Care in US Hospitals 2011Snapshot, CAPC

BENEFITS TO HOSPITALS Improved patient and family satisfaction Improved quality of care for patients and their families Meets the needs of an aging population Assists in compliance with hospital care quality (Joint Commission) Transition of patient to appropriate level of care- often reducing length of stay, especially in the ICU Decreased hospital costs and resource utilization Improved staff satisfaction and retention

PALLIATIVE CARE (THIS IS THE MESSAGE!) Improve Quality of Life (“It’s about the living”) Goals of Care=Plan of Care  Ensure patient’s treatments are goal- directed  NOT disease-directed  NOT technology driven

DO NOT ALLOW YOUR AWE FOR TECHNOLOGY AND OUR ABILITY TO KEEP A BODY FUNCTIONING BLUR YOUR DEFINITION OF LIFE…….

THIS IS A SKILL…Let’s put ourselves “out of business” Palliative Care teams must provide education and support to hospital staff regarding symptom management communication issues ethical dilemmas family conference/goal setting resource utilization

TOOL #1 Maslow’s Hierarchy

ANXIETY/INSOMNIA DYSPNEA DEPRESSION NAUSEA/DIARRHEA FEAR/AGITATION COUGH FATIGUE/WEAKNESS COMMON SYMPTOMS

TOOL #2 Patient Centered Interview F = FEELINGS related to the illness, especially fears What are you most concerned about? Do you have any specific fears or worries right now? I imagine you have had many different feelings as you have coped with this illness. Sometimes people have fears that they keep to themselves and don’t tell their doctor. I = IDEAS and explanations of the cause of a symptom or illness What do you think might be going on? What do you think this pain means? Do you have ideas about what might have caused this illness? F = FUNCTIONING, the illness’ impact on daily life How has your illness affected you day to day? What have you had to give up because of your illness? What goals do you have now in your life? How has your illness affected your goals? How does this illness affect important people in your life? E = EXPECTATIONS of the doctor & the illness What do you expect or hope I can do for you today? Do you have expectations about how doctors can help? What do you hope this treatment will do for you? What are your expectations about what might happen with this illness?

TOOL #3 Family Meeting  Multidisciplinary  Format (templates available CAPC) Team data demonstrates  80% rate of multidisciplinary family conferences by Day 2 of consult  Tangible outcomes Treatment goals Resolution of conflicts Advance Directives  Documented in the chart!

DIFFICULT DECISIONS Are we preserving life or prolonging death? When is chemo or radiation therapy palliative in nature and when is it curative? PEG tube placement? Do I want to be a DNR-what is a DNR? IVF’s? Hemodialysis? What is “quality of life”? Our job as palliative care providers is to gently help patients reach conclusions that are in line with their goals, then do our best to help them achieve those goals.

OLD VS NEW APPROACH Palliative Care Medicare Hospice Benefit Bereavement Disease Progression Diagnosis of serious illnessDeath Life Prolonging Care Hospice Care Life Prolonging Care Old New

“Concurrent Care” “Early Palliative Care of Patients with Metastatic Non-Small-Cell Lung Cancer” Temel, J, NEJM 363;8 151 patients with new diagnosis metastatic NSC Lung Cancer Randomized to Onc Care OR Onc Care + Palliative Care

Results Onc + Palliative Care group  Reported better QOL  Less depression  Chose less “aggressive” care at EOL  Lived Longer (11.6 months vs. 8.9 months)

“Non-hospice” Palliative Care Allocate resources by need, not prognosis (hospice) Inpatient (ICU!! IPAL-ICU) Outpatient Palliative Care Programs  Hospital-Based  Hospice/HH Based Long-term Care Facilities  25% of Americans die in NH  By 2030 NH population expected to double from 1.5 million to 3 million

“When a patient is severely ill, he is often treated like a person with no right to an opinion. It is often someone else who makes the decision if and when and where a patient should be hospitalized. It would take so little to remember that the sick person too has feelings, has wishes and opinions, and has-most important of all-the right to be heard.” Elisabeth Kubler-Ross, MD

Recommended Reading “Living Long in Fragile Health: The New Demographics Shape End of Life Care”, Joanne Lynn, MD (Hastings Center Report) “Letting Go. What Should Medicine Do When it Can Not Save Your Life?”, Atul Gawande (New Yorker Article) “Handbook for Mortals”, Joanne Lynn, MD “Hard Choices for Loving People” Hank Dunn (Patient-Friendly Pamphlet) “Palliative Care; Transforming the Care of Serious Illness”, Diane Meier, et al

Other Resources Center to Advance Palliative Care (capc.org) American Academy of Hospice and Palliative Medicine (AAHPM.org) Education in Palliative and End of Life Education ( ELNEC ( EPERC (  Fast Facts

REFERENCES Kubler-Ross, E. (1969). On death and dying. New York, NY: Scribner. Center to Advance Palliative Care (CAPC). (2008). Palliative care and hospice care across the continuum. care-across-the-continuum. End-of-Life Nursing Education Consortium (ELNEC) (2007). Promoting palliative care nursing. ELNEC-Core Training Program. City of Hope and American Association of Colleges of Nursing. National Consensus Project (NCP) for Quality Palliative Care (2004). National consensus project for quality palliative care: Clinical practice guidelines for quality palliative care, executive summary. Journal of Palliative Medicine, 7(5), National Quality Forum. (2006). A national framework and preferred practices for palliative and hospice care: A consensus report. Washington DC.

Questions?