Palliative Care for Heart Failure Patients: Practical Tips for Home-Based Programs

1. National Hospice and Palliative Care Organization’sPalliative Care Resource Series PALLIATIVE CARE FOR HEART FAILURE PATIENTS: PRACTICAL TIPS FOR HOME BASED PROGRAMS Parag Bharadwaj, MD Anjali Chandra, MD Donna Stevens, BS Ernst R. Schwarz, MD, PhD

2. INTRODUCTION • More than 5 million people suffer from heart failure (HF) in the US • Half the people who develop HF die within 5 years of diagnosis • HF has a high symptom burden • Palliative care intervention provides comfort and optimization of treatment plan and goals

3. OVERVIEW • HF • Definition • Pathophysiology • Clinical Features • Disease Management • Palliative Care in HF Patients at Home

4. DEFINITION OF HEART FAILURE • HF is a pathophysiologic condition in which the efficiency of the myocardium is reduced through damage and overloading, resulting in decreased cardiac output (CO) and circulatory failure • Characterized by recurrent decompensation and persistent symptoms

5. RELEVANT PATHOPHYSIOLOGY • Heart fails to pump adequate blood to meet the requirements of the metabolizing tissues • Types • Systolic HF • Impaired contractile function of the heart with reduced ejection fraction (EF) • EF < 40% might indicate systolic HF • Diastolic HF • Impaired ventricular filling during relaxation phase • Normal EF of 55 – 60%

6. CLINICAL FEATURES • Predominant Symptoms • Shortness of Breath • Exceptional Dyspnea • Orthopnea • Paroxysmal Nocturnal Dyspnea • Acute Pulmonary Edema • Pain around the chest and other parts of the body is under diagnosed

7. CLINICAL FEATURES • Other Common Signs and Symptoms: • Fatigue • Weakness • Weight Gain • Nausea and Bloating • Sexual Dysfunction • Insomnia • Lack of Concentration • Cognitive Decline • Memory Loss • Muscle Wasting • Cachexia

8. DISEASE MANAGEMENT • Non-Pharmacological Interventions • Exercise • Diet • Sodium Restriction • Fluid Restriction • Nutrition

9. DISEASE MANAGEMENT • Pharmacological Interventions • Diuretics • Vasodilator • Inotropes • Beta Adrenergic Receptor Blockers • Angiotensin-Converting Enzyme Inhibitors (ACEIs) • Angiotensin II Receptor Blockers (ARBs) • Supplemental Oxygen

10. DISEASE MANAGEMENT • Invasive Strategies • Electrophysiologic Intervention Devices: CRT and pacemakers • Ventricular Assist Device (VAD) • Revascularization Procedures: CABG and PCI • Valvular Surgery: valve replacement or repair, ventricular restoration

11. PALLIATIVE CARE FOR HF PATIENTS AT HOME • Meeting the patients’ needs at home lessens the patient and caregiver burden and prevents avoidable hospital admissions • Delivery of this type of care requires intense planning and care coordination between all involved medical specialties and additional support • Team involved includes Palliative Care, Primary Care, Cardiology, as well as some additional community partners such as Home Care, Parish Nurses and Area Agency on Aging

12. CLINICAL: AREAS OF FOCUS • Vital Signs, with special attention to: • Oxygen Saturation • 5th vital sign - pain • Physical Exam • Labored Breathing • Fluid Overload • Jugular Venous Distention (JVD) • Auscultation of Lungs: Crackles • Pedal Edema

13. CLINICAL: AREAS OF FOCUS • Weight and Fluid Input/Output • Weight Gain – Fluid Overload • Input should be less than output • Insensible Water Loss: 600 – 900ml/day • Functional Status (use one tool consistently) • Suggest Palliative Performance Scale (PPS) • Monitor for change – fluid overload, progression of disease • Prognostic implications

14. CLINICAL: AREAS OF FOCUS • Screening for Symptoms (use one tool consistently) • Suggest Edmonton Symptom Assessment Scale (ESAS) • Medication Reconciliation • Assess ability to manage medications • Ensure understanding, purpose and importance of each medication • Ensure adequate supply of medication to optimize compliance

15. CLINICAL: AREAS OF FOCUS • Hardware Check (pacemakers, ICDs) • Relevance of the devices in relation to goals needs to be revisited on a regular basis • Intravenous Inotrope Infusions • Requires higher level of maintenance • Fixed dose, usually not titrated

16. CLINICAL: AREAS OF FOCUS • VADs and Post Transplant Patients • Experienced multi-disciplinary team must be involved in management • Protocols placed in advance, including turning off the device at home • Review of Records • Essential to know baseline of clinical parameters in order to identify significant changes

17. CLINICAL: AREAS OF FOCUS • Any changes in the areas of focus will require a more thorough assessment to determine changes needed in the home regimen or to escalate care to the next level, such as setting up an appointment with the cardiologist or transfer to the hospital • All changes should be implemented in collaboration with the HF service

18. ADDITIONAL NEEDS ASSESSMENT: AREAS OF FOCUS • Emotional and Financial Support Screening • Request social worker follow-up, if needed, in addition to routine social worker visits • Spiritual Needs Screening • Request chaplain visit, if needed, in addition to routine chaplain visits • Caregiver Screening • Ensure social worker and chaplain support to caregiver(s) • Monitor for burnout

19. PATIENT GOALS: AREAS OF FOCUS • Care plan and patient goals should be reviewed frequently with the patient and caregiver to ensure the appropriate care is being delivered • Every patient should have an advance directive completed, preferably a POLST (Physician Orders for Life Sustaining Treatment) • Any changes should be promptly reflected in the document • Documents should be readily available to patient, caregiver and paramedics (if called)

20. PATIENT GOALS: AREAS OF FOCUS • Depending on the patient’s clinical status, options and goals should be readdressed on a regular basis • Informing the patient and the caregiver of options, including hospice, is necessary

21. REVIEW AND EDUCATION: AREAS OF FOCUS • Any changes in the treatment plan should be given to the patient and caregiver in writing and reviewed with them during the visit • Before leaving the patients’ residence, patients and/or caregivers should be instructed to call the palliative care service with any questions or concerns. A back-up plan must be in place when the service is not available. • Ideally, a call to the primary physician/cardiologist should be made from the patient’s home during every visit and the plan of care should be reviewed

22. OPERATIONAL • Outline scope of practice of each team member • Optimization of care requires team function as one unit with team members being able to rely on each other • Routine Interdisciplinary Team (IDT) meetings are essential

23. OPERATIONAL • Role delineation is vital • Meet with primary care colleagues and the cardiology team to establish parameters • Strong relationship with cardiology and primary care is essential • Involve all specialties during regular patient care meetings • Operational communication is vital for discussing changes such as protocols and practice personnel

24. OPERATIONAL • Emergency strategy needs to be set up • Off-work hours plan needs to be in place if your service is not 24/7 • Clinical and operational data, patient/family satisfaction and referring entity satisfaction should be collected and reviewed routinely • Additional support from cardiology is essential if palliative care becomes involved with VAD patients

25. OPERATIONAL • Expected Outcomes • Improved continuity and quality of care • Decrease in ER visits and hospitalizations • Increased adherence to patient goals • Improved patient and provider satisfaction

26. SUMMARY: LESSONS LEARNED AND BEST PRACTICES • A well-coordinated team is required, preferably with a shared electronic medical record • Frequent team meetings allow other insights and techniques; each home setting is unique and requires attention and respect for the environment • Focus should be on keeping the patient comfortable and meeting patient/family goals, versus just avoiding hospitalizations. Some hospitalizations may be appropriate

27. SUMMARY: LESSONS LEARNED AND BEST PRACTICES • Prevention and preventative plans are vital • Home is where the heart is; figuring out how to eliminate obstacles for patients is part of the terrain • Social interactions and being able to give to others in some way is good medicine

28. SUMMARY: LESSONS LEARNED AND BEST PRACTICES • An office nurse coordinator who will work with the palliative care provider(s) and triage phone calls, provide clinical input, assist with care coordination and manage referrals maximizes the providers’ time • Relationships develop in a different way when in the home; resiliency and self-care must be part of this work