Palliative Care as a Strategy For Improving Quality and Fostering System Reform Jeffrey Peppercorn, MD, MPH Associate Professor of Medicine Duke Cancer Institute

Definition of palliative care – Diane Meier, MD, Director, Center to Advance Palliative Care, Mt Sinai Hospital Palliative care is specialized medical care for people with serious illnesses focused on providing patients with relief from the symptoms, pain, and stress of disease and treatment. The goal is to improve quality of life for both the patient and family. Palliative care is 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. Palliative care can be provided together with curative treatment.” Slide Courtesy of Tom Smith

Why is Palliative Care Part of Cancer Care Why is Palliative Care Part of Cancer Care? High Symptom Burden Symptoms in Advanced Lung Cancer 4-6 months before death 0-3 months before death 70 patients with advanced lung cancer The majority of patients had metastatic NSCLC. The Lung Cancer Symptom Scale was used to assess symptom frequency. Another study assessed symptom prevalence in cancer patients at the time of palliative care or hospice referral. Of the lung cancer patients, 74% reported pain, with 51% experiencing moderate to severe pain. Additional symptoms included: 46% dyspnea, 32% constipation, 14% nausea. Loss of Appetite Chest Pain Fatigue Cough Dyspnea Hemoptysis Lutz, J of Pall Med (4) 2 2001

High Burden on Family/Caregivers 40-70% report depression Depression gets worse as patients status declines and they lose ability to perform normal activities Rhee JCO 26 (36) 2008

Staus Quo: Lack of Realistic Conversations Perceptions of chance for CURE among patients with incurable cancer… CanCORS Study 1,200 patients Stage IV Lung or Colorectal on chemo Asked: “How likely is cure” 3/4 of patients with incurable disease believe they can be cured…. This might impact decisions about what toxicity patients endure, how they spend their time, whether they pursue hospice. Weeks NEJM 367 (17) 2012

Late Discussion of Hospice Survey of U S Oncologists: Keating, Cancer. 2010 Feb 15;116(4):998-1006 WHEN DO YOU DISCUSS HOSPICE? “when there are no more treatment options” ~ 60% of Med Oncologists “at the time of diagnosis of incurable disease” ~18% of Med Oncologists 50% of patients with lung cancer in U.S. have no discussion of hospice 2 months prior to death Huskamp HA, et al. Arch Intern Med. 2009 May 25;169(10):954-62

CONTEXT 62 yo man with incurable Stage IV lung cancer spread to his bone, lung, and his liver. He doesn’t have mutation suggesting a role for targeted therapy He is treated on 1st line Carboplatin + taxol with a partial response, but after 5 months has progression of disease. He now has shortness of breath, worsening pain, and fatigue What are my options? 2nd Line therapy Standard Rx Clinical Trial Palliative Care Hospice

“Ideal” Care will vary by patient Performance Status Disease Directed Therapy Research Participation Symptom Focused Palliative Care Preferences Prior Rx Goals Comorbidity Biomarkers Family Support Symptoms Research Options

Cancer Care: What are we good at? Obtaining imaging, labs, biopsies to make a diagnosis Developing and implementing a treatment plan for the disease Often with toxic chemotherapy Increasingly with molecularly targeted agents Emerging immune mediated agents Discussing and planning next treatment when the cancer gets worse

Cancer Care: What are we less good at? Managing symptoms of disease Identifying and managing side effects of treatment Having realistic conversations about prognosis Discussing the full range of options for care, including integration of palliative care and disease directed care, or of palliative care alone Discussing end of life care and death

WHY? We train cancer specialists in management of disease (breast cancer) not in management of symptoms (nausea, fatigue). Financial incentives reward action: give chemo, perform surgery…. Not talking Its hard to talk about treatments not working and its hard to talk about death

Just Because Something is hard, does not mean we shouldn’t do it… Philae probe successfully lands on comet 300 million miles away - Nov 12th, 2014 We can probably have honest conversations…..

The Rationale to Integrate Palliative Care with Cancer Care Many cancers are incurable Patients, and their families, suffer as a result of disease and treatment Discussions of goals of care & focus on QOL often occur late, if ever When asked, patients often want more focus on palliative care

Discussing Prognosis and Preferences impacts care and QOL Coping With Cancer Study: 332 patients with advanced cancer, 7 clinical centers ONLY 37% report discussing EOL preferences Discussing EOL was NOT associated with depression or anxiety Discussing EOL DID lead to less aggressive care, more hospice Aggressive care (ED, ICU, chemo in last weeks) associated with: Worse Quality of Life Higher risk for depression among caregivers Earlier hospice associated with better patient and caregiver QOL Wright, JAMA 2010

+ Societal Imperative…. Most spending on cancer in the U. S + Societal Imperative….Most spending on cancer in the U.S. occurs in the Last Year of Life Age > 65 years The bulk of cost falls within the first year and the last year of life Huge cost in last year of life, points to opportunities for cost savings Mariotto t Al. J Natl Cancer Inst 2011; 103: 117-28

Total Medicare Spending (patients >65): We are spending a lot without giving some patients what they need, and giving others what they don’t want…. FACT 1: We spend too much on futile care FACT 2: We often do this, without giving patients what they want Many with incurable cancer never discuss their preferences When they do, they often choose symptom management over disease directed care. Opportunity to improve care AND reduce costs…. Total Medicare Spending (patients >65): ~ 500 Billion (2010…) 1/3 on Last Year of Life: ~ 165 billion 40% on Last 30 Days : ~ 66 billion 12% of US Budget 2% of US Budget! ~ 2x NIH Budget… Ramsey et al, JNCI 2013

Potential Benefits of Early Palliative Care Improve QOL Improve understanding  Informed choices Reduce futile care Chemo within weeks of death, death in ICU/hospital Improve allocation of healthcare resources Spend $ on high value care, research to find cure? Improve survival?

A better Model?: Integrating Palliative and Oncology Care Slide Courtesy of Jennifer Temel

Palliative Care in Randomized Trials Home PC vs. standard care in homebound terminally ill patients Improved patient satisfaction and quality of life Decreased use of ER and Hospital Brumley J Am Ger Soc. 2007 PC vs. standard in patients with poor prognosis chronic illness PC improved shortness of breath, anxiety, sleep, well-being Rabow, Arch Int Med 2004 RCT: Hospital PC vs. standard in patients with terminal illness Increased use of hospice, decreased ICU care Gade, J Palliative Med 2008

Improved quality of life, fewer symptoms, and less depression Project ENABLE: Palliative Care Outreach + standard Oncology Care “Educate, Nurture, Advise, Before Life Ends” RCT in 322 rural patients with advanced cancer: intervention vs. standard care 4 weekly telephone educational sessions + monthly f/u by nurse 41% GI, 36% lung, 12% GU, 10% breast Improved quality of life, fewer symptoms, and less depression . Bakitas M, et al. Project ENABLE. JAMA 2009

Proof of Principle for Early Palliative Care Temel, NEJM, 2010

Study Design RANDOMIZED Meet with palliative care within 3 weeks of signing consent and at least monthly thereafter RANDOMIZED Early palliative care integrated with standard oncology care 150 patients with newly diagnosed metastatic NSCLC Baseline Data Collection Meet with palliative care only when requested by patient, family or oncology clinician. Standard oncology care Within 8 wks of diagnosis ECOG PS 0-2 English speaking Receiving care at MGH Not already receiving palliative care Patients who have an understanding of their life expectancy are participate in ACP are more likely to accept hospice at the EOL. Thus providing more comprehensive support for patients throughout the course of their disease may not only benefit their current health status but also allow for a more timely transition to hospice care. Integrated oncology and palliative care can bridge the gap between cancer-directed and comfort-oriented therapies in advanced cancer patients. PC provided by MD or NP in Cancer Center on day of clinic visits with med onc, rad onc, or surgery Patients admitted to hospital also followed by PC team Temel, NEJM, 2010 22

Palliative Care Visits Early Palliative Care (N=77) How many visits? Palliative Care Visits by 12-weeks Palliative Care Visits Standard Care (N=74) N (%) Early Palliative Care (N=77) None 64 (87%) 1 (1)* 1 7 (9%) 2 3 (4%) 8 (10%) 3 18 (23%) 4 26 (34%) > 5 24 (31%) * Died within 2 weeks of enrollment 88% 3 or more 11% 1-2 visits Temel, NEJM, 2010

Early palliative care + standard oncology care improved survival by almost 3 months vs. usual oncology care! Temel J, et al. NEJM 2010; Greer J, et al. JCO 2011 Longer and better survival Better understanding of prognosis Less IV chemo in last 60 days Less aggressive end of life care More and longer use of hospice Lower costs of care AND improved QoL, Less Anxiety and Depression, - Temel JCO 2011

The American Society of Clinical Oncology now recommends “…combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.” Smith TJ, et al. J Clin Oncol. 2012 Mar 10;30(8):880-7.

AAHPM Choosing Wisely Task Force and ASCO Choosing Wisely Converging on how to achieve HIGH VALUE CARE 2. Don’t delay palliative care for a patient with serious illness who has physical, psychological, social, or spiritual distress because they are pursuing disease-directed treatment.  Slide Courtesy of Tom Smith

Access to Palliative Care: Growing Rapidly > 5,700 registered hospitals in U.S.

Access to Palliative Care?: Not Everywhere Only 60% of Hospitals nationwide had palliative care programs as of 2012 Center to Advance Palliative Care, 2012 Report Card

Some Challenges Behavior Change SCIENCE What are the most important aspects of palliative care? Is the survival benefit reproducible? Seen in other cancers? Need more research focused on symptom management Care Delivery How is it best delivered? Separate team? Oncology Office? How do we offer this to all patients? Reimbursement for symptom management and care planning? Behavior Change Are patients interested? Do they know what they are missing? Are Physicians receptive to this? How do we educate patients and oncologists regarding benefits