Palliative Care within Cancer Care Dr. Maddalena DeRosa November 14, 2015 OBJECTIVES Understanding Palliative Care and how it differs from Hospice care Understanding the benefits obtained from Palliative Care Learning to identify patients who would benefit from Palliative Care Learning at least 3 tools for facilitating discussions about End of Life concerns. IN OTHER WORDS What Why Who How Palliative care Palliative care affirms life by supporting the patient and familys goals for the future, including their hopes for cure or life-prolongation, as well as their hopes for peace and dignity throughout the course of illness, the dying process, and death. The National Consensus Project (NCP) 2004 Palliative care Patient and family centered care. Additive or supportive care The goal of palliative care is the relief of physical, psychological, emotional, and spiritual suffering of patients and families. Interdisciplinary and collaborative. Palliative care team members have clinical and communication expertise. Early introduction of palliative care should begin at diagnosis of a serious or life threatening illness. Does not exclude any care options, including curative interventions KELLEY AS, MORRISON RS. N ENGL J MED 2015;373: Palliative Care as Compared with Hospice. PALLIATIVE CARE CANCER STATISTICS 2015 Cancer is the second leading cause of death in the United States Cancer is expected to surpass heart diseases as the leading cause of death in the next few years. Cancer death rates have been continuously declining for the past 2 decades. Overall, the risk of dying from cancer decreased by 22% between 1991 and 2011, although there are regional differences across the United States. However, today, death is often more complicated. Many people suffer from progressive or chronic, critical illnesses that eventually reach a point when curative approaches are no longer possible. CANCER STATISTICS 2015 Approximately 25% of all U.S. deaths occur in the long-term care setting, and this figure is projected to rise to 40% by the year Up to 20 percent of all deaths in the United States occur in or shortly after an ICU stay. Many of these patients are surrounded by family members who experience stress, fear, anxiety and depression The number of Americans experiencing pain in the last year of life increased by nearly 12 percent between 1998 and 2010 and depression in the last year of life increased by more than 26 percent. TOTAL PAIN PALLIATIVE CARE BENEFITS New England Journal, August 19, 2010; Temel et al. Early Palliative Care for patients with metastatic non-small cell lung cancer 151 patients newly diagnosed with stage IV, randomized to early palliative care integrated with standard oncologic care or standard oncologic care alone Quality of life and mood were assessed at baseline and 12 weeks Patients in palliative care arm had significantly better quality of life and mood. Median survival was longer in the palliative care arm, by 3 months. PALLIATIVE CARE BENEFITS In 2012, after publication of strong evidence from a phase III randomized controlled trial (RCT), an American Society of Clinical Oncology provisional clinical opinion recommended consideration of combined standard oncology care and palliative care early in the course of illness for any patient with metastatic cancer and/or a high symptom burden. In May 2015, the ENABLE (Educate, Nurture, Advise Before Life Ends) III trial, was published. It evaluated outcomes for 207 patients and 122 family caregivers associated with the receipt of palliative care earlier rather than later in the course of illness, and showed statistically significant beneficial effects on survival and on family caregivers' depression 5% increase in 1-year survival and 6% decrease in family caregivers' mean depression scores are clinically significant. For example, the survival effect was larger than the beneficial effect of chemotherapy compared with supportive care alone for advanced nonsmall-cell lung cancer (meta- analysis shows an absolute improvement in survival of 9% at 12 months). IMPACT OF SERIOUS ILLNESS ON FAMILIES Receiving aggressive measures impacts the mental health of the bereaved. Three times more likely to develop major depressive disorders if they received aggressive measures. 50% develop Post-Traumatic Reaction symptoms if patient died in an ICU setting. 82% develop Post-Traumatic Reaction symptoms, if they were involved in end of life decisions in an ICU setting. Wright et al, 2008; Azoulay et al, Wendler et al, 2011 15 NOT HAVING THE CONVERSATION CREATES DISTRESS FOR FAMILIES DEFINITIONS Code Status interventions performed in setting of cardio-pulmonary arrest Advance Directive a document that describes an individuals wishes and often includes Living Will and Healthcare Proxy Living Will treatments individuals want (or dont want) if they are in a coma Healthcare proxy an individual entrusted to act on your behalf in the event you are unable to make or communicate health care decisions (A) A hopeful and unrealistic patient focuses on cancer cure and life-prolongation measures, without paying attention to her symptoms and advance care needs. Eduardo Bruera, and David Hui JCO 2010;28: 2010 by American Society of Clinical Oncology RESUSCITATION What is truth? Context matters in these decisions CPR success varies. Adults have a 24% survival rate. If you are older than 65, your survival rate is 18%. If you have metastatic cancer, your survival rate is 8%. If you have metastatic cancer and are in an ICU setting, your survival rate is 2%. HOW TO INITIATE DISCUSSIONS IN SETTING OF STABLE, CHRONIC ILLNESS If things were to change in your health, have you thought about: Who would be your spokesperson and have you ever talked to that individual about this Things that you would be, or not be, willing to endure (e.g. ventilator, dialysis etc.). What things are important in your life, what do you value? ONE SIMPLE QUESTION Have you and your doctor discussed any particular wishes you have about the care you want to receive if you were dying? Those that had were: less likely to receive CPR, be intubated, or admitted to the ICU more likely to be enrolled in outpatient hospice for more that a week SPIKES (BREAKING BAD NEWS) S etting Up P erception I nvitation/Information Knowledge E motion/Empathy S ummary Buckman and Baile, 1992 I WISH THINGS WERE DIFFERENT. Instead of Im sorry Promotes alignment over hierarchy Avoids sense of error or blame Allows for hope and realism Expression of empathy Use: unrealistic hopes, disappointment in limits of medicine, grief, bad news WAYS TO EXPRESS EMPATHY Naming You seem upset Understanding This must be hard Respecting I am so impressed Supporting Our team will be here Exploring Tell me more about OTHER PRACTICAL SKILLS Reflection Affirmation Normalization Open-ended questions Summarizing E mpathic Curiosity TELL ME MORE Useful approach for exploration and drawing out Allows some specificity Shows clinician is listening ASK-TELL-ASK Elicits info from patient/family and builds on it Keeps you from doing all the talking You listen and build the relationship Small chunks of info Allows for clarification ADAPT A Ask what the patient knows and wants to know D Discover what info about future would be useful A Anticipate ambivalence P Provide info in the form patient wants T Track emotion PHRASES TO AVOID What do you want us to do? Withdrawal of care Stop the machines. Theres nothing more we can do. Do you want us to do everything? PEARLS Invite the conversation Respond to emotion, reframe hope after loss identified Respond to guilt and feelings of responsibility Reaffirm commitment to patient and family Emphasis what will be done and what is possible Give the family time Praise patient and family for work to now SKILL SETS Oncology Basic management of pain and symptoms Basic management of depression and anxiety Basic discussions about: Prognosis Goals of treatment Suffering Code status Palliative Care Management of refractory pain or other symptoms Management of more complex depression, anxiety, grief and existential distress Assistance with conflict resolution/ ambivalence or uncertainty regarding goals or methods of treatment Assistance in addressing cases of near futility Quill & Abernathy, NEJM 2013 WHEN TO REFER FOR PALLIATIVE CARE? If you ask yourself would I be surprised if this individual dies within the year and the answer is yes Two hospitalizations in 6 months or three in 1 year for same/similar diagnoses Rapid functional and/or nutritional decline in the setting of a chronic/advanced medical diagnosis Diagnosis of metastatic cancer (VA directive) TRIGGERS TO CONSIDERATION OF PALLIATIVE CARE Difficult to control physical or emotional symptoms Patient or family uncertainty regarding goals of care Patient or family requests futile care Use of tube feeding or TPN in a cognitively impaired or seriously ill patients Limited social support CRITERIA FOR HOSPICE CARE: GENERAL GUIDELINES Loss of function Life-limiting condition Treatment goals are for comfort rather than cure Weight loss (>10% of body weight) Recurrent inpatient admissions (2 in 6 months or 3 in one year) Sudden period of more rapid decline after a somewhat stable phase of disease CONCLUSIONS Early discussions about goals of care with ALL clinicians Palliative care team Introduction: Part of the Team Balancing hope and reality Symptom management, especially pain, dyspnea, and mood Support the family Decreasing hospitalization Bereavement support REFERENCES The National Consensus Project (NCP): Clinical Practice Guidelines for Quality Palliative Care. Released in March, the 2013 Clinical Practice Guidelines for Quality Care Palliative Care for the Seriously Ill; Amy S. Kelley, M.D., M.S.H.S., and R. Sean Morrison, M.D N Engl J Med 2015; 373: August 20, 2015DOI: /NEJMra August 20, 2015 Cancer Statistics, 2015 Rebecca L. Siegel, MPH1 *; Kimberly D. Miller, MPH2 ; Ahmedin Jemal, DVM, PhD CA CANCER J CLIN 2015;65:529, VOLUME 65 _ NUMBER 1 _ JANUARY/FEBRUARY 2015 Back et al. Mastering communication with seriously ill patients. Cambridge University Press American Cancer Society. Cancer Facts & Figures Atlanta: American Cancer Society; Pantilat SZ. Communicating with seriously ill patients, better words to say. JAMA 2009;301(12): REFERENCES Symptom Trends in the Last Year of Life From 1998 to 2010: A Cohort StudyAdam E. Singer, MPhil et al. Ann Intern Med. 2015;162(3): doi: /M Integrating Supportive and Palliative Care in the Trajectoryof Cancer: Establishing Goals and Models of Care. Drs. Eduardo Bruera and David Hui. Journal of Clinical Oncology, VOLUME 28 _ NUMBER 25 _ SEPTEMBER Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients With Advanced Cancer:Outcomes From the ENABLE III Randomized Controlled Trial J. Nicholas Dionne-Odom, Andres Azuero, Kathleen D. Lyons, Jay G. Hull, Tor Tosteson, Zhigang Li,Zhongze Li, Jennifer Frost, Konstantin H. Dragnev, Imatullah Akyar, Mark T. Hegel, and Marie A. Bakitas. Journal of clinical oncology VOLUME 33 _ NUMBER 13 _ MAY Quill et al. I wish things were different: Expressing wishes in response to loss, futility and unrealistic hopes. Ann Intern Med 2001;135(7):551-5. RESOURCES(blog, courses, videos, and pearls; you may want to check out the short video here commenting on the current movie Inside Out)(terrific videos for teaching and learning)(courses, directed longitudinal mentoring, great resources and videos) 16 TH CENTURY GREEK ADAGE To cure sometimes, to relieve often, to comfort always