Hospice Care: Advocacy and Identification for Optimal Patient Outcomes

1. Hospice Care:Advocacy and Identification for Optimal Patient Outcomes Amy Muhlenbruck, BSN, RN Chief Clinical Officer Saint Jude Hospice muhlenbrucka@saintjudehospice.org

2. Objectives • Understand current state associated with barrier to hospice referral. • Learn basic regulations associated with hospice care. • Learn indicators of common terminal diagnosis and prognosis. • Enhance communication strategies for conversations introducing hospice care. • Understand hospice care expectations for an assisted living population.

3. HOSPICE: What do we know? Unique set of benefits for dying patients: • Medications, medical equipment (DME), aide services • Interdisciplinary Group support (IDG) • Medical Director, RN, Spiritual Counselor, Social Worker, Volunteer • Care planning • Education • Families receive emotional and spiritual support and bereavement counseling x1 year following death

4. What do we know? High-quality care with high levels of satisfaction: • Improved pain assessment and management • Improved bereavement outcomes • Better overall satisfaction • Greater satisfaction among families of patients referred to hospice

5. However… Hospice provides care for only one third of all dying patients • Enrollment generally very late in the course of illness • Median LOS is approximately 3 weeks • 10% of patients enroll in their last 24 hours of life • Unknown the proportion of ideal enroll or optimal LOS Widespread agreement among experts in the field and physicians that more patients could enroll in hospice and many of those who enroll should do so sooner.

6. Barriers to Hospice Referral • Medicare Hospice Benefit requirement: • Life expectancy of 6 months or less • Forgo curative treatments • Palliative Care • Causes delay in enrollment • Reimbursement rate/expensive palliative treatment

7. Palliative Care Defined WHO Definition of Palliative Care • Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. • Prevention and relief of suffering by means of early identification • Assessment and treatment of pain • Other problems: physical, psychosocial and spiritual.

8. Palliative Care Defined Relief from pain and other distressing symptoms; • Enhance quality of life, and may also • Positively influence the course of illness. • Applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life: • Chemotherapy or radiation therapy • Includes those investigations needed to better understand and manage distressing clinical complications.

9. Barriers to Hospice Referral Barriers created by the challenges of hospice discussions • Patients and Families cannot accept that effective, disease-directed treatment is no longer available or 6 months prognosis • Patients or families to have overly optimistic goals and expectations of treatment • Even the most careful and persistent communication efforts often fail to change patients’ and families’ goals

10. The Result? Decision to enroll in hospice is unlikely • However:Physicians should still discuss the patient’s goals and can use these discussions to introduce hospice Barriers to physician conversation: • Hospice discussions difficult and uncomfortable • Asking to “give up” on disease-directed treatment • Comfort with “bad news” discussions • Time for “bad news” discussions

11. What clinical criteria determines eligibility? • Local Coverage Determination (LCD) • Used by the National Government Services in reviewing hospice claims • Framework to guide determination of hospice eligibility • Includes specific eligibility criteria for certain disease categories • Disease specific indicators, functional limitations, and contributory co-morbid conditions • Continual evaluation of a patient’s terminality status and eligibility for ongoing hospice care

12. Local Coverage Determination LCDs • Formally called LMRPs – Local Medical Review Policies • Changed to LCDs in 2003 • LCDs are only guidelines • Created to assist in determining eligibility based on disease severity (how advanced is it?) • Limited prognosis is the only real eligibility criterion Remember: Don’t ask exclusively about what is the DIAGNOSIS, Prompt conversation to consider true PROGNOSIS.

13. Eligibility vs. Compassion • Patient assistance with a number of significant problems: medical, psychological, spiritual and social. • Patients who do not meet the hospice eligibility guidelines may have these same needs but do not have a six month or less prognosis. Even though we may wantto provide services to these patients, we have an obligation to admit/certify/recertify only those patients who meet the guidelines set by Medicare.

14. Eligibility vs. Care Provided • Belief of hospice“Eligibility” is too often related to how much care is provided (how much they “need” us) rather than the actual medical eligibility for the benefit: • False belief a patient is eligible because: • The nurse sees them 3x a week • The aide is helping them to eat • The family really needs our help

15. Care Required • This type of documentationmay help to corroborate eligibility but it does NOT define eligibility • Eligibility documentationMUSTreflect the Medicare LCD criteria

16. Criteria Eligibility • Patients Must Meet 1 of 4 Criteria to be “Eligible” • They meet all the Local Coverage Determination (LCD) criteria. • They meet most of the LCD criteria and have documented rapid clinical decline suggesting a limited prognosis. • They meet most of the LCD criteria andhave significant comorbidities that contribute to a limited prognosis. • The physician’s clinical assessment is that the patient has a limited prognosis and is documented. Confidence in understanding , results in patient advocacy and appropriate care.

17. Co-Morbid Conditions If a patient does not meet all LCD criteria, significant comorbidities must be documented to support the limited prognosis. • 6-month prognosis may be appropriate if: • Additional organ system involved and • There are processes that of themselves limit prognosis but not to the 6-month “terminal” degree. • It isn’t the number of co-morbid conditions, it’s the severity that counts.

18. Considerations re: Co-Morbid Conditions • Contribute to health decline, prognosis, and terminality • Processes that of themselves limit prognosis but not to the 6-month “terminal” degree. • Common conditions that need active management at EOL • hypertension, atrial fibrillation, thromboembolic disease, dementia, osteoporosis, diabetes mellitus, and arrhythmia. • Both the life limiting illness and comorbidity change clinically over time and therefore need regular review. • Hospice Myth – WE DON’T DISCONTINUE ALL MEDS!

19. Co-Morbid Conditions • Examples of co-morbid conditions that may not impact the patient’s prognosis: • Amputation • Glaucoma • Controlled Diabetes Mellitus • Controlled hypertension • Anything that of itself does not significantly impact the patient’s prognosis is not a valid comorbidity (from an eligibility perspective).

20. Common Themes of Prognosis • The disease process is causing significant disability, despite medical therapy. • Recent functional or nutritional decline, or co-morbid diseases significantly effect the prognosis. “Would you be surprised if the patient passed away this month?” “Would it surprise you if they lived until Christmas?”

21. Consider the question… Why hospice? Why now?

22. Paint the picture…

23. Identification Algorithm

24. Clinical Judgment • What if there is no specific diagnosis? • Elderly with functional impairment, weight loss • Usually several chronic illnesses, not clear what will be the cause of death • May have a recent acceleration in the decline • Elect not to pursue aggressive medical evaluation or treatment due to advanced age or poor medical condition

25. Language of Hospice Discussions

26. Language of Hospice Discussions

27. Regulatory Considerations for Hospice Admission • Hospice programs must provide • Documented evidence that supports admission • Continued certification of the terminal illness (CTI) and eligibility • Eligibility for benefit provided by a Medicare hospice • Eligible for Medicare Part A (Hospital Insurance) • Twophysicians must certify the patient’s terminal illness • primary physician and the hospice medical director • Patient is terminally ill and has 6 months or less to live if the illness runs its normal course • Informed Consent • Signed statement by patient electing hospice to treat terminal illness

28. What is Certification of Terminal Illness? • Often referred to as CTI • Social Security Act provides the statutory requirement (Benefit Periods) for the certification of terminal illness • Content of Certification: • Certification will be based on the primary care physician (PCP) or hospice medical director’s clinical judgment regarding the normal course of the individuals illness. (No nurse practitioners) “In the judgment a physician, if the disease runs it’s normal course, death could happen in 6 months or less.”

29. CTI Requirements • Must specify the prognosis is for a life expectancy of 6 months or less, if the illness runs it’s normal course. • Clinical documentation supporting the medical prognosis.(not diagnosis) • Definitions: • Diagnosis: process ofidentifyingthe nature and cause of a disease or injury through examination of patient. • Prognosis: A predictionof the probably course and outcome of the disease; likelihood of recovery.

30. CTI Requirements Documentation • Filed in the patient’s medical record with written certification. • Physician must include brief narrative of findings supporting prognosis <6 months. • Physician signature must be present on documentation. • Narratives must be written to reflect patient’s unique clinical picture – No Check Boxes!

31. Who Decides? • Who Decides? • On admission: • The admitting physician and the hospice medical director must both certify a life expectancy of 6 months or less, if the illness runs the expected course. • Certification is based on data from the primary (admitting) physician and the medical record. • The decision is clinical using the four guideline criteria. • Not just careneeds and unfortunately, not just compassion, qualifies a patient for hospice.

32. Recertification Patient remains “eligible” for hospice services • Documentation must support hospice criteria. • Decline from admission is not necessarily required unless it is part of the LCD or rapid decline was part of initial certification. • Face to Face (F2F) may be required.

33. Face to Face (F2F) Encounter CMS Requirement as of January 1, 2011 • All patients entering their third or later benefit period. • Medicare Payment Advisory Commission (MedPAC) concerns • High number of patients with lengths of stay <than 180 days • Concern that physicians were not as active in the care and treatment of hospice patients as may be required • Incorporated into the Patient Protection and Affordable Care Act • Healthcare reform law passed by the Congress and signed into law in March 2010. • Completed by a hospice physician or nurse practitioner

34. Terminal vs. Custodial Payment Review Question: • “Is this patient receiving terminal or custodial care?” • If documentation doesn’t reflect that the patient is terminal (usually means documenting clinical decline) the hospice is at risk for payment denial. • Definition of 'Custodial Care' • Non-medical care that helps individuals with his or her activities of daily living, preparation of special diets and self-administration of medication not requiring constant attention of medical personnel. Providers of custodial care are not required to undergo medical training.

35. Clinical Decline Documentation • Multiple recent hospitalizations, emergency room visits, or utilization of other healthcare services • Serial assessments (labs, X-rays, etc.) showing progressive illness. • Changes in the MDS (Minimum Data Sets) in nursing facility patients. • MDS contains items that measure physical, psychological and psychosocial functioning. • MDS give a multidimensional view of the patient's functional capacities and helps staff to identify health problems. • Progressive deterioration while receiving home healthcare services. • Failure of rehabilitation - Skilled

36. Nutrition and Prognosis • 10% weight loss in elderly, over 6 months associated with high mortality. • 62% vs. 9% mortality over 6 months • BMI < 22 kg/m2 associated with increased mortality in the elderly. • Hospitalized patients with BMI < 20 kg/m2 had the highest mortality in the 6 months post discharge.

37. Nutritional Definitions • Cachexia • Among most debilitating and life-threatening of nutritional deficits • Characterized by • Involuntary weight loss, fat and muscle wasting, fatigue, immune dysfunction, metabolic and hormonal dysfunction • Anorexia • Loss of appetite or desire to eat • Frequently accompanies cachexia • Anorexia-Cachexia syndrome • Common in cancer patients • Consistent association with negative clinical outcomes • Decreased response to treatment • Experience more side-effects • Less likely to complete their cycles of chemotherapy

38. Function and Prognosis • Elderly patients with significant ADL deficits had a median survival of 6 months. • 80% 2-yr mortality • ADL deficits are the most important predictor of 6-month mortality. • Stronger than diagnosis, mental status, or ICU admission. • bathing, dressing, toileting, transfer, continence, feeding

39. PPS: Palliative Performance Scale • Generalizations • 50%: mainly sit/lie • Requires considerable assistance with ADLs • 40% mainly in bed • Assistance with all ADLs • 30% confined to bed • Total care

40. Cancer • Second Leading cause of death in the U.S. • Mass of abnormal cells characterized by: • Dysplasia – Abnormality of cell development • Hyperplasia – Increased cell production

41. LCD for Cancer diagnosis • Determine type and location of Cancer diagnosis • Class III or IV per medical record • Determine distant metastatic site • Progressed from earlier stage with an identifier • Continuous decline despite treatment • Patient decline further disease directed therapy Note: Certain cancers with poor prognoses may be hospice eligible without meeting LCD criteria • Example: • Small Cell Lung cancer • Brain cancer • Pancreatic cancer

42. Cardiovascular Disease • Single leading cause of death in the U.S. today • Cardiomyopathies: Diverse group of primary myocardial diseases • Approximately half are idiopathic: unknown cause • Others: • Chronic, high alcohol intake • Auto-immune processes, viral infection, inherited tendencies • Select medicines causing cardio-toxicity (chemo) • Infiltrative disease, fibro plastic diseases • Coronary Artery Disease (CAD) • Presents as either: • Diffuse degeneration of myocardial fibers • Hypertrophy or infiltration of the myocardium with fibrous tissues • Results in decreased cardiac output • HINT: Ejection Fraction (EF)

43. LCD for Cardiovascular Diseases Review criteria on Determining Terminal Status worksheet Must have: • Congestive Heart Failure (CHF) with NYHA Class IV symptoms • Declined invasive treatment New York Heart Association (NYHA) classification system: • Used to determine best course of therapy • Used to stage heart failure • Relates to everyday activities (functional status) • Patients quality of life (QOL)

44. NYHA Classification – Stages of Heart Failure

45. LCD for Cardiovascular Diseases Review criteria on Determining Terminal Status worksheet Must have either: • Symptoms of CHF and /or angina at rest • CHF documented by Echo result of < or = to 20 • Inability to carry out minimal physical activity without dyspnea or angina increasing OR: • Optimally treated with: (or medical reason for not treating) • Diuretics, Vasodilators, ACE Inhibitors, Nitrates, PASP (pulm HTN) • Other associated medications Think: Drugs have met their “Shelf Life” or “Optimal Benefit”

46. LCD for Cardiovascular Diseases Review criteria on Determining Terminal Status worksheet Additional Supporting Data: • Treatment resistant symptomatic supraventricular or ventricular arrhythmias (irregular rate or rhythm) • History of cardiac arrest or resuscitation (Code Blue) • History of unexplained syncope (fainting or passing out) • Brain embolism (block by a blood clot, fat globule, air bubble) • Secondary Cardiovascular Accident (CVA) of cardiac origin • Concomitant HIV disease (happening at the same time)

47. Pulmonary Disease • Obstructive Pulmonary Disease • Chronic spasm of small airways due to chronic disease • 3rd Leading cause of death in U.S.* • Lives claimed = 134,676 Americans in 2010 • 2011, 10.1 million Americans physician diagnosis of Chronic Bronchitis • 65 years or > = highest rate of 64.2 per 1,000 persons • COPD prevalence = <4% MN & WA vs. >9% AL & KY • Pass 11 consecutive years = Women surpassed men in deaths • Estimated 715,000 hospital discharges in 2010 • 2010 Cost of care to nation = approx. $49.9 billion • Due to toxin and tobacco exposure • Forced Expiratory Volume (FEV1) is reduced <30% • Chest is chronically hyper-inflated • PaCO2 is incresed:PaO2 drops (*American Lung Association, 2014)

48. LCD for Pulmonary Disease Review criteria on Determining Terminal Status worksheet Must have: • Severe chronic lung disease as documented by disabling dyspnea at rest • Poorly responsive or unresponsive to bronchodilators • Decreased functional capacity; bed to chair, fatigue, cough • FEV1 after bronchodilator <30% • Progression as evidenced by • Increased ER visits • Hospitalizations for pulm infections and/or failure • Increased home physician visits • Objectively documented with decrease in FEV1 >40ml/year

49. LCD for Pulmonary Disease Review criteria on Determining Terminal Status worksheet Must have: • Hypoxemia at rest on room aire • Abnormally low O2 in the blood = shortness of breath (SOB) • PaO2 < or = to 55% or O2 saturation < or = to 88% or • PaO2 measured by arterial blood gases (ABG) – invasive • O2 sat measured by pulse oximeter - non-invasive • Hypercapnia with pCO2 > or = to 50 mmHG • Increase of carbon monoxide (waste product) in the blood • Caused by hypoventilation, measured by ABGs • Symptoms: headache, change in LOC, drowsiness, sleepiness • Late: flushed skin, dizziness, rapid breathing, increased B/P & HR • Late: Respiratory failure and death

50. Neurological Conditions • 3 Distinct Pathophysiology • Injury • 3rd Leading Cause of death in U.S. • Leading cause of serious long-term disability • Trauma • Degenerative diseases