Disclosure The Role of Palliative Care in the Management of Advanced Heart Failure I have no conflict of interest to disclose. Darrell Craig MD Medical Director, Palliative Care Services St. Joseph Mercy Ann Arbor February 12, 2013 Objectives: The learner will CMS Definition of Palliative Care Be able to articulate an understanding of Palliative Care including: Role of symptom management Goal setting Differences and similarities of palliative care and hospice Be able to identify the changing itinerary with CHF including: Longer life Longer death Potential detours with invasive therapies Recognize the highly variable nature of patient expectations and preferences including: Illness and prognostic understanding Identifying the prolong/palliate ratio goals of individuals How advance care plans change over time Recognize the role of symptom management and the role of hospice care of the CHF patient Palliative care means patient and familycentered 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 to facilitate patient autonomy, access to information, and choice. 73 FR322-4, June 5, 2008 Medicare Hospice Conditions of Participation Final Rule
they re not ready for Palliative Care. How does Palliative Care differ from Hospice? The messenger doesn t know the definition of palliative care The messenger is equating palliative care with hospice How can patients benefit from a service that professionals don t understand? Overcoming the physician barrier of needing a patient s permission to consult Palliative Care Non-hospice palliative care Appropriate at any point in a serious illness Provided at the same time as life-prolonging treatment No prognostic requirement No need to choose between treatment approaches Hospice a form of palliative care Provides care for those in the last weeks-few months of life Patient must have 2 physicians certify prognosis is less than 6 months Patient gives up insurance coverage for curative/life prolonging treatment Why are Hospice and Non-hospice Palliative Care needed? WHAT DO PATIENTS WANT? USA Culture and End of Life Living longer with chronic illness Expectation to defeat death Less connected to continuum of life Unprecedented healthcare advancements Healthcare fragmentation Less trust between healthcare/patient Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burdens on their families Strengthen relationships with loved ones Singer et al. JAMA 1999;281(2):163-16
Why non-hospice Palliative Care? PALLIATIVE CARE MODEL The Abiding Desire Not to be Dead I don t want to achieve immortality through my work. I d rather achieve it by not dying. Woody Allen Studies of patients with serious illness report increasing desire for aggressive therapies as health status declines. Fried et al. Arch Intern Med 2006; 166:890-895 Clinical Course of CHF ACC/AHA Staging System for Heart Failure Allen et al, Decision Making in Advanced Heart Failure: A Scientific Statement From the AHA. Circulation 2012.
NYHA Functional Class Best Practices Best symptom management of CHF is through evidence based guideline management of CHF Identifying barriers to adherence External Internal Always weighing benefit/burden of any treatment from the patient perspective CHF Checklist Invasive Therapies for Heart Failure Assess adherence to guideline-based therapy Assess functional status Assess markers of CHF progression ER visits Hospital admissions Medication reduction due to side-effects Significant weight loss Create Advance Directives Establish plans for the future Therapy ICD CRT (BiV pacing) Indication EF < 30% Life expectancy > 6 months NYHA Class III HF EF < 35% QRS >120 msecs Benefits Survival Improved survival (w/icd) Improved symptoms/qol Decreased hospitalizations Burdens Pain/Psychological trauma firing/inappropriate firing Surgical and device related complications Surgery and device related complications Infection Diaphragmatic pacing Notes ACC/AHA Guidelines a driving force but state should not be placed in patients with prognosis of 6 months or less 20-30% show no clinical response Often coupled with ICD
Invasive Therapies for Heart Failure ICD Information for Patients (and Healthcare Providers) Therapy LVAD Transplantation Indication Bridge to transplant Destination therapy NYHA Class IV HF refractory to optimal medical management Refractory angina Refractory V. arrhythmias Benefits Compared to optimal medical management: Improved survival Improved QOL Improved survival Improved QOL Burdens Bleeding Infection Thromboembolic events Issues related to withdrawal of device Death or permanent disability from surgery High 1 st year mortality Life-long immunosuppression Uncertainty while on wait list Notes FDA approved for destination therapy Initial studies had no survival beyond 2 yrs Newer devices likely afford longer survival Fewer than 2500 patients per year 50% alive at 10 years Survival as long as 20 years If we put an ICD in 100 patients with heart disease like yours over the next 5 years we would expect: 30 patients will die anyway 7-8 patients will be saved by the ICD 10-20 would have a shock they don t need 5-15 would have other complications The rest of patients will not experience their devices at all Some patients will request to have the device inactivated to allow natural death Inotropic Therapy Physicians as Bearers of False Hope Dopamine, Dobutamine and Milrinone Treat refractory symptoms Decrease hospitalizations INCREASED MORTALITY Sudden death due to arrythmias Line complications Cost on the order of $40,000/year
Prognostic Errors PREDICITING PROGNOSIS IN CHF Prognostic estimates are often wrong and usually optimistic 504 terminally ill patients of 365 physicians: 20% Accurate 63% Overly optimistic 17% Overly pessimistic Overestimated by factor of 5.3 No specialty better or worse than another» Christakis, N., BMJ 320:469-72; 2000 Prognosis often dependent on patient s perception of benefit/burden of treatment Like other chronic diseases with acute exacerbation, difficult to decide when an exacerbation is the final one Prognosis: More than Survival Predicting Survival in CHF http://depts.washington.edu/shfm/app.php
EFFECT http://www.ccort.ca/research/chfriskmodel.aspx Major Tenets of CHF Advance Care Planning Difficult discussions now will simplify difficult decisions in the future Shared decision making is an iterative process that evolves over time Prognostic uncertainty is inevitable and needs to be included in discussions When EOL is anticipated, clinicians should take responsibility for a comprehensive plan consistent with patient values, preferences and goals Roadmap Ratio of Prolong/Palliate Establish setting and participants Determine what patient knows and wants to know Establish goals and preferences Hopes Biggest concerns/fears Things to avoid Tailor treatments and decisions to goals Benefits/burdens based on goals Be willing to make recommendation based on patient s goals Acknowledge uncertainty
A Transformation Explicit and skillful management of hope during medical decision making Transforms how individuals think and feel about their situation Directly impacts the decisions that are made and the experiences that follow Can result in the experience of healing, especially at the end of life CHF Readmissions and the Role of Palliative Care Identifying the reason for readmission Failure of healthcare team to follow established guidelines Patient nonadherence to plan Barriers Burdens End-stage disease Identifying outcomes relative to the individual patient Learning to listen to the wisdom of patients and their families who are living the disease Symptoms in CHF Symptoms in CHF Dyspnea Importance of maintaining control of volume status Low dose opioids Pulmonary rehab Fatigue Treat underlying cause, e.g. anemia Methylphenidate Exercise Pain Opioids; Avoid NSAIDs Bone: Bisphosphonates Angina: Nitrates, stenting, etc. Depression Antidepressants: SSRIs, SNRIs, TCAs Exercise
Stage D ACEI/ARB Therapy: When to Consider Decreasing? When the patient might feel better without: Symptomatic hypotension Worsening renal function that inhibits maintenance of comfortable fluid status Worsening renal function with uremic symptoms (usually BUN >100) If patient is also on spironolactone consider its discontinuation as well Stage D Beta Blocker Therapy: When to Consider Decreasing? When the patient might feel better without: Symptomatic hypotension Symptoms of refractory or recurrent fluid retention Exertional dyspnea Worsening renal function even after ACEI/ARB discontinued When fatigue, listlessness, or lack of interest dominate CAUTION: BBI withdrawal may worsen symptom burden in patients with active arrhythmias or angina Heart Disease Hospice Criteria CARING FOR THE SICK Primary Factors Symptoms of recurrent heart failure or angina at rest, discomfort with any acitivity (NYHA Class IV) Patient already optimally treated with diuretics and vasodilators (ie, ACE inhibitors Secondary Factors Ejection fraction <=20% Symptomatic arrhythmias History of cardiac arrest and CPR Unexplained syncope Embolic CVA of cardiac origin HIV disease The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself. "Bodies do not suffer, only persons suffer." Eric Cassell, MD; 1982 Author, The Nature of Suffering and the Goals of Medicine