Nathan Goldstein, MD Mount Sinai School of Medicine The Case for Palliative Care Palliative Care Cardinale B. Smith, MD, MSCR Assistant Professor Division of Hematology/ Medical Oncology Tisch Cancer Institute Brookdale Department of Geriatrics & Palliative Medicine Hertzberg Palliative Care Institute Icahn School of Medicine at Mount Sinai

Palliative Care Specialized medical care for people with serious illnesses. Focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Appropriate at any age and at any stage of a serious illness, and can be provided together with curative or disease directed treatments.

Palliative Care in Practice Nathan Goldstein, MD Mount Sinai School of Medicine The Case for Palliative Care Palliative Care in Practice Expert control of pain and symptoms Uses the crisis of the hospitalization to facilitate communication and decisions about goals of care with patient and family Coordinates care and transitions across fragmented medical system Provides practical support for family and other caregivers (+ clinicians)

Old Model: Two types of care Palliative /Hospice Care Disease-focused Care (“Aggressive Care”)

The Cure - Care Model: The Old System DEA TH Life Prolonging Care Palliative/ Hospice Care Disease Progression

Nathan Goldstein, MD Mount Sinai School of Medicine The Case for Palliative Care A New Vision of Care LIKE ENSURE, WE HAVE AN OPPORTUNITY TO EXTEND THE ACCESS POINT PAST THE “SICK POINT” Disease Modifying Therapy curative or restorative intent Life Closure Death & Bereavement Diagnosis Palliative Care Hospice

Palliative Care

Nathan Goldstein, MD Mount Sinai School of Medicine The Case for Palliative Care Palliative Care Is Palliative Care Is NOT Excellent, evidence-based medical treatment Vigorous care of pain and symptoms throughout illness Care that patients want at the same time as efforts to cure or prolong life Not “giving up” on a patient Not in place of curative or life-prolonging care Not the same as hospice or end-of-life care Use clinical examples! Talk about why you went into it – Mr. Santana Talk about what you do every day.

Consumer Knowledge of Palliative Care 95% of respondents agree that it is important that patients with serious illness and their families be educated about palliative care. 92% of respondents say they would be likely to consider palliative care for a loved one if they had a serious illness. 92% of respondents say it is important that palliative care services be made available at all hospitals for patients with serious illness and their families. CAPC/ACS Public Opinion Survey, 2011

Significance of Palliative Care More patients with serious illness not imminently dying, but living with chronic and debilitating conditions Surveys of patients and families have identified top needs: Relief of suffering Practical support needs Open communication Opportunities to relieve burdens and strengthen relationships with families Thankfully we have turned many diseases into chronic illnesses but this comes at a cost……..

Palliative Care – Relevance In Context Lifetime Risk of: Heart disease: 1:2 men; 1:3 women (age 40+) Cancer: > 1:3 Alzheimer's: 1:2.5 – 1:5 by age 85 Diabetes: 1:5 Parkinson’s: 1:40

The Reality of the Last Years of Life: Death Is Not Predictable Nathan Goldstein, MD Mount Sinai School of Medicine The Case for Palliative Care The Reality of the Last Years of Life: Death Is Not Predictable In part, it because there are different functional trajectory that patients take prior to death. For Edna, she will have multiple excerbations and most likely on the day of her death she will be about the same .. in that she will die of an Arrythmia.. while a patient with Cancer will have a functional decline in the las 6-8 weeks of life..Edna has actually been this way for two years.. Given this inherent ambiguity, it is our argument for these diseases that we need to learn how to prepare patients for their deaths while still pursuing life-extending treatment. We need to learn how to manage patients with what seem to be contradictory goals. To achieve this, health care providers must openly negotiate with patients about goals of care and incrementally make transitions to limit the use of aggressive, life saving treatments. At all times, we should attend to the patient’s comfort. Perhaps we should hold ourselves to the standard that we must recognize when medical treatment is over burdensome and no longer beneficial in the patient’s eyes. Perhaps, we should promise patients that, at worst, “I will only over treat you once.” Time (slide adapted from Joanne Lynn, MD, Rand Health/CMS) 29

Hospital Palliative Care: The 5 Main Principles Clinical Quality Patient and Family Preferences Demographics Education Finances

Why palliative care? 1. The Clinical Imperative The need for better quality of care for people with serious and complex illnesses.

Everybody with serious illness spends at least some time in a hospital... 98% of Medicare decedents spent at least some time in a hospital in the year before death. 15-55% of decedents had at least one stay in an ICU in the 6 months before death. Average length of stay in the ICU is 2-11 days. Dartmouth Atlas of Health Care 1999 & 2006

Symptom Burden of Patients Hospitalized With Serious Illness at 5 U. S Symptom Burden of Patients Hospitalized With Serious Illness at 5 U.S. Academic Medical Centers % of 5176 patients reporting moderate to severe pain between days 8-12 of admission Colon Cancer 60% Liver Failure 60% Lung Cancer 57% COPD 44% CHF 43% Desbiens & Wu. JAGS 2000;48:S183-186.

Why palliative care? 2. Concordance with patient and family wishes What is the impact of serious illness on patients’ families? What do persons with serious illness say they want from our healthcare system?

What Do Patients with Serious Illness Want? Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burdens on family Strengthen relationships with loved ones Singer et al. JAMA 1999;281(2):163-168.

“Difficult” Conversations Improve Outcomes Multisite, longitudinal study of 332 patient-family dyads 37% of patients reported having prognosis discussion at baseline These patients had lower use of aggressive treatments, better quality of life, and longer hospice stays Family after-death interviews showed better psychological coping for those with conversations as compared to those without Wright et al. JAMA 2008 300(14):1665-1673

What Do Family Caregivers Want? Study of 475 family members 1-2 years after bereavement Loved one’s wishes honored Inclusion in decision processes Support/assistance at home Practical help (transportation, medicines, equipment) Personal care needs (bathing, feeding, toileting) Honest information 24/7 access To be listened to Privacy To be remembered and contacted after the death Tolle et al. Oregon report card.1999 www.ohsu.edu/ethics

Families Want to Talk About Prognosis Qualitative interviews with 179 surrogate decision makers of ICU patients 93% of surrogates felt that avoiding discussions about prognosis is an unacceptable way to maintain hope Information is essential to allow family members to prepare emotionally and logistically for the possibility of a patient's death Other themes: moral aversion to the idea of false hope physicians have an obligation to discuss prognosis surrogates look to physicians primarily for truth and seek hope elsewhere Apatira et al. Ann Intern Med. 2008;149(12):861-8

Why palliative care? 3. The demographic imperative Hospitals need palliative care to effectively treat the growing number of persons with serious, advanced and complex illnesses.

Chronically Ill, Aging Population Is Growing The number of people over age 85 will double to 10 million by the year 2030. The 23% of Medicare patients with >4 chronic conditions account for 68% of all Medicare spending. US Census Bureau, CDC, 2003 Anderson GF. NEJM 2005;353:305 CBO High Cost Medicare Beneficiaries May 2005

Hospital Based Palliative Care Programs in the United States 63% of all hospitals and 85% of mid-large size hospitals report a palliative care team 100% of cancer centers report a palliative care team

Nathan Goldstein, MD Mount Sinai School of Medicine The Case for Palliative Care Vermont, Maryland, Minnesota, Nebraska, Oregon, Washington – GOOD JOB! Nation moves from a “C” grade to a “B” in less than 5 years

Why palliative care? 4. The educational imperative Every doctor and nurse-in-training learns in the hospital.

Deficiencies in Medical Education Specialty Number of Fellowship Positions Number of Fellowship Programs Number of Providers Cardiology 779 175 25,901 Medical Oncology 486 130 14,000 Palliative Care and Hospice 234 85 4,400 http://www.nrmp.org/data/resultsanddatasms2012.pdf

Improvements in Education 2007 Board Certification in Palliative Care Medical school licensing requirement: “Clinical instruction must include important aspects of … end of life care (average 14 hours).”

Why palliative care? 4. The fiscal imperative Hospital and insurers of the future will have to efficiently and effectively treat serious and complex illness in order to survive.

Healthcare Spending and Quality U.S. leads the world in per capita spending 27th in life expectancy 37th in overall quality of healthcare system (WHO) http://ucatlas.ucsc.edu/spend.php

I’m afraid we’ve had to move him to expensive care

National Health Expenditure Growth 1970-2003 HCFA, Office of the Actuary, National Health Statistics Group, 2003

Nathan Goldstein, MD Mount Sinai School of Medicine Costs and Outcomes Associated with Hospital Palliative Care Consultation 8-hospital study The Case for Palliative Care Live Discharges Hospital Deaths Costs Usual Care Palliative Care P Total Per Day $1,450 $1,171 <.001 $2,468 $1,918 Directs Per Admission $11,1240 $9,445 .004 $22,674 $17,765 .003 Laboratory $1,227 $803 $2,765 $1,838 ICU $7,096 $1,917 $15,542 $7,929 Pharmacy $2,190 $2,001 .12 $5,625 $4,081 .04 Imaging $890 $949 .52 $1,673 $1,540 .21 Died in ICU X 18% 4% Adjusted results, n>20,000 patients Morrison et al. Arch Internal Med. 2008. 168 (16)

Nathan Goldstein, MD Mount Sinai School of Medicine The Case for Palliative Care 8 Hospital Study: Costs/day for patients who died with palliative care vs. matched usual care patients

Cost Savings – Medicaid in NY State Cost savings/Day for Live Discharges Morrison et al. Health Affairs 2011 30:454-63

Nathan Goldstein, MD Mount Sinai School of Medicine U. Michigan- Hospice of Michigan Palliative Care Reduces Hospital Costs (patients with complete data as of July 1, 2002, at Medicare prices, excludes Rx) The Case for Palliative Care Need hospice cost per day for both groups Dollar costs for each bar for hospitalization Dollar costs for each bar totally

How Palliative Care Reduces Length of Stay and Cost Clarifies goals of care with patients and families Helps families to select medical treatments and care settings that meet their goals Assists with decisions to leave the hospital, or to withhold or withdraw treatments that don’t help to meet their goals

Aug 19 2010;363(8):733-42

What Does All this Mean from the Patient Perspective? For patients, palliative care is a key to: relieve symptom distress navigate a complex medical system understand the plan of care help coordinate and control care options allow simultaneous palliation of suffering along with continued disease treatments (no requirement to give up life prolonging care) provide practical and emotional support for exhausted family caregivers

What Does All this Mean from the Clinician Perspective? For clinicians, palliative care is a key tool to: Save time help to handle repeated, intensive patient-family communications, coordination of care across settings, comprehensive discharge planning Provide Symptom Control assists with controlling pain and distress for highly symptomatic and complex patients, 24/7 -thus supporting clinician’s treatment plan Promote Satisfaction increases patients’ and families’ satisfaction with the quality of care provided by the clinician

What Does All this Mean from the Hospital Perspective? For hospitals, palliative care is a key tool to: effectively treat the growing number of people with complex advanced illness provide excellent patient-centered care increase patient and family satisfaction improve staff satisfaction and retention meet accreditation and quality standards rationalize the use of scarce hospital resources increase bed/ICU capacity, reduce costs

But………. Disparities in access to palliative care Lack of a solid evidence base to guide clinical care and care delivery Lack of research funding to support needed research Need for public advocacy and public and professional education

Research Publications: Oncology and Palliative Care (2003-2005) Gelfman LP, Morrison RS. J Palliat Med, 2008 46

Summary Palliative care improves quality of care for our sickest and most vulnerable patients and families. Serious illness is a universal human experience and palliation is a universal health professional obligation.

‎"When we honestly ask ourselves which people in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm heart and tender hand. The person who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, and face with us the reality of our powerlessness, that is a person who cares.”   -Henri Nouwen