Disclosures Advanced Heart Failure I have nothing to disclose - PDF document

12/3/17 Palliative Care in Disclosures Advanced Heart Failure • I have nothing to disclose Steven Pantilat, MD Professor of Medicine Kates-Burnard and Hellman Distinguished Professor in Palliative Care Director, Palliative Care Program and Palliative Care Quality Network University of California, San Francisco Twitter: @stevepantilat Palliative Care Program Life Expectancy: Heart Failure Good News, Bad News • 5 million US adults have CHF – 1 in 5 adults will develop heart failure – Affects 10% of adults 75 years and older Death Rate: 100% • Most frequent cause of hospitalization in Life expectancy elders (years) • Treatments increase quality and length of life 30,000 BCE 15,000 BCE 1,000 BCE 2009 AHA. 2006 Heart and Stroke Statistical Update Redfield et al. JAMA 2003;289:194–202 Palliative Care Program Palliative Care Program 1

12/3/17 Why Palliative Care for Patients with Heart Failure? 5 years • High mortality • Significant symptom burden 250,000 • Repeated hospitalizations • Palliative care improves symptoms, quality of life, satisfaction, and family outcomes 1/3 to 1/2 • Required by Medicare for destination LVAD Rogers et al. JACC 2017;70:531-41 Stewart et al. Eur J Heart Fail 2001; 3:315-22 Pantilat, Steimle, and Davidson: Advanced Heart Disease in Cherny Stevenson and Stevenson J Cardio Electrophys 2001;12:112-4 et al. eds, Oxford Textbook of Pall Med , 2015. Oxford, UK. Tribouilloy et al. Eur Heart J 2008;29:339-47 Pantilat et al. JHM 2012;7:567-72 Palliative Care Program Palliative Care Program Roger et al. JAMA 2004;292:344-50 Symptoms in Patients with Chronic Disease Palliative Care is ✓ ✓ Symptom Inpt CA Outpt CA HF medical care focused Pain 43-81% 50% 41-78% on improving quality of Fatigue 81% 18% 69-82% life for people with Dyspnea 19-61% 71% 60-88% serious illness Depression 37% 59% 9-56% Mean # 14 +/- 5 10 +/- 6 Pantilat et al. J Card Failure 2010;16:S88 Weiss et al. Lancet 2001;357:1311-5 Ng and von Gunten J Pain Sympt Man 1998;16:307-16 Levenson et al. JAGS 2000;48:S101-9 Solano et al. J Pain Sympt Man 2006;31:58-69 Palliative Care Program 2

12/3/17 Concurrent Palliative Care Integrating Palliative and Heart Failure Care “ Live as well as possible for as long as possible ” + Hospice Home PC 100 Palliative care Hospice Intensity of patient + Consultative PC % needs Bereavement focus + Primary Palliative Care of care Advance care planning Curative care time 0 Time Terminal phase Death Palliative Care Program Palliative Care Program • Hope is durable – Hopelessness is a sign of depression – Depression, even in serious illness and near the Talking about what is really going on end of life, is not normal and responds to will destroy hope treatment • Discussing prognosis will not take away hope • For healing where there is no cure Talking about hope encourages it • For comfort in the face of suffering • For all that can still be despite all that cannot be – ICU wedding – Donuts Palliative Care Program 3

12/3/17 Most Important Issues at End of Life The Golden Questions Making sure family not burdened • “ When you think about the future, what do financially by my care: 67% you hope for? ” Being comfortable and without pain: 66% • “ When you think about what lies ahead, Being at peace spiritually: 61% what worries you the most? ” Making sure my family is not burdened by tough decisions about my care: 60% Living as long as possible: 36% California HealthCare Foundation 2011 Advance Care Planning in Heart Failure Better Words to Say x • Early “There is nothing more we can do” – Identify and document a surrogate Simply not true – Routine practice Feels like abandonment – Websites, videos, groups • Later – Preferences for ER and hospitalization “ I wish there was something we could do to make your heart stronger. ” El-Jawahri et al. Circ 2016;134:52-60 Prepareforyourcare.org Pantilat JAMA 2009;301:1279-81 theconversationproject.org Palliative Care Program Palliative Care Program 4

12/3/17 Better Words to Say x “ Would you like us to do everything possible? ” The goal is not to have a good death “ How were you hoping we could help? ” The goal is to live a good life Pantilat JAMA 2009;301:1279-81 5

12/3/17 Palliative Care in Heart Failure • Address distressing symptoms in people with heart failure • Discuss advance care planning early and revisit • Integrate palliative care and advanced heart failure care • Talk about hope to encourage it • The goal is to live a good life Palliative Care Program Palliative Care Program 6