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Deciding When Hospice is Needed
This document provides guidance for healthcare professionals on determining a terminal prognosis and accessing hospice care. It discusses the challenges of prognosis, general clinical criteria like functional status and symptom burden, and disease-specific guidelines for predicting prognosis in cancers, end-stage cardiac or pulmonary disease, dementia, cerebrovascular disease, liver disease, HIV/AIDS, and end-stage renal disease without dialysis. Key points are that prognosis involves clinical judgment of multiple factors, physicians tend to overestimate survival, and guidelines provide population-level rather than individual predictions.
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Deciding When Hospice is Needed
- 1. Deciding When Hospice isNeeded Confidential & Proprietary
- 2. Goal To educate healthcareprofessionals about the challenges of end-of-life care specifically when determining a terminal prognosis, so that they can assist, support and provide the optimum care for the patient and family during the final stages of life
- 3. Objectives • Understand thechallenges for patients, families and healthcare providers in accessing hospice care • Understand the Theoretical Trajectories of Dying • Describe the General Guidelines for Clinical Progression of Disease • Describe the basic criteria for determining prognosis in patients with various cancers • Detail the clinical criteria for a number of end stage (ES) non-cancer diseases
- 4. Reflections about Prognosis •Cornerstone to clinical decision-making – Elicit goals through shared decision-making – Plan of care • Multiple domains – Remaining life expectancy – Functional status, social status • Inherent uncertainty • Physicians are bad at it – No clinical training – In general overestimate everything – Takes time and no reimbursement Glare et al. Journal of Palliative Medicine 2008;11(1): 84-103
- 5. Science of Prognosis •“Accurate” estimates of prognosis for a population with a specific disease • Increased “noise” as we attempt to estimate the prognosis for an individual • Further challenges with comorbidity Stockler et al. Br. J Cancer, 2006;94(2):208-212
- 6. Medicare Hospice Benefit TerminalIllness: “A medical prognosis (of a) life expectancy of six months or less as determined by two physicians, if the illness runs its normal course”
- 7. Medicare Hospice Benefit BenefitsProtection and Improvement Act (BIPA) 2000 Certification of terminal illness of an individual who elects hospice “shall be based on the physician’s or medical director’s clinical judgment regarding the normal course of the individual’s illness”
- 8. Lifetime Odds Heart Disease1:5 Stroke 1:23 Breast Cancer 1:8 Prostate Cancer 1:6 Lung Cancer Male/Female 1:13/1:16 Dementia 1:3 Death 1:1
- 9. Predicted versus observed survivalin 468 terminally ill hospice patients. Diagonal line represents perfect prediction. Patients above diagonal are those in whom survival was overestimated; patients below line are those in whom survival was underestimated. Christakis NA, Lamont EB: Extent and determination of error in physicians’ prognoses in terminally ill patients: Prospective cohort study. British Med J 320:269, 2000. Predicting Prognosis
- 10. Copyright restrictions mayapply. Lunney J, Lynn J, Foley DJ, et al. Patterns of Functional Decline at the End of Life. JAMA 289:2387-2392, 2003. Theoretical Trajectories of Dying
- 11. General Domains toConsider • Clinical judgment • Nutrition • Physical function • Cognition • Health care utilization • Symptoms • Disease-specific decline
- 12. Clinical Judgment Would yoube surprised if this patient were to die in the next six months?
- 13. Nutritional Status Unintentional weightloss • > 10% of normal body weight • Declining Body Mass Index (BMI) – < 22 kg/m2 • Anthropomorphic measures – Triceps skin fold thickness – Mid-arm muscle area (MMA) • Low serum albumin levels – Limited utility Wright JB, Kinzbrunner BM: Predicting Prognosis: How to decide when end- of life care is needed. Chapter 1 in Kinzbrunner BM, Policzer JS (eds): End- of-Life Care: A Practical Guide. New York: McGraw Hill, 2011, p. 3.
- 14. Weight Loss andPrognosis Long-Term Care •153 residents, 24 lost 5% weight in one month •5.1 times more likely to die in one year Outpatient •Prospective evaluation of 91 patients with weight loss •35% no identifiable cause •25% died over the ensuing year (Cass, 1995) (Morton, et al, 1981)
- 15. Physical Function • PalliativePerformance Scale (PPS) – scale of 0% (dead) to 100% (normal) – PPS score of 50 indicates significant disease • Activity of daily living (3/6 dependency) – Bathing – Dressing – Continence – Transferring – Ambulation – Feeding • Falls
- 16. Palliative Performance Scale (PPS) PPSrating Ambulation Self-Care Intake LOC Activity Evidence of disease 100 Full Full Normal Full Normal No evidence of disease 90 Full Full Normal Full Normal Some evidence of disease 80 Full Full Normal or reduced Full Normal with effort Some evidence of disease 70 Reduced Full Normal or reduced Full Unable to do normal work Some evidence of disease 60 Reduced Occasional Assistance Normal or reduced Full or confusion Unable to do hobby or housework Significant disease 50 Mainly Sit/Lie Considerable Assistance Normal or reduced Full or confusion Unable to do any work Extensive disease 40 Mainly in Bed Complete Assistance Normal or reduced Full, drowsy, or confusion Unable to do any work Extensive disease 30 Bed Confined Total Care Reduced Full, drowsy, or confusion Unable to do any work Extensive disease 20 Bed Confined TotalCare Minimal sips Full, drowsy, or confusion Unable to do any work Extensive disease 10 Bed Confined Total Care Mouth care only Drowsy or coma Unable to do any work Extensive disease 0 Death Anderson F, Downing GM, Hill J, et al: Palliative Performance Scale (PPS): A new tool. J Palliative Care 12 (1):5, 1996.
- 17. Survival by PPSat Acute Care Hospital (Olajide, et al, 2007)
- 18. Activity of DailyLiving Difficulty and Death (Steinman, et al, 2012) ADL Difficulty Proportion Population Median Survival None 72.1% 10.6 yrs Mild 16.1% 6.5 yrs Moderate 7.0% 5.1 yrs Severe 4.3% 3.8 yrs Complete 0.5% 1.6 yrs
- 19. 25% of thosewho fell died within one year Falls and One-Year Mortality (Wild, et al, 1981)
- 20. Cognitive Decline • Orientationto person, place and time • State of consciousness/awake or asleep in 24 hours • Ability to communicate and follow commands • Recognize environment
- 21. Utilization of HealthCare • Clinic visits – Primary care – Subspecialty • Emergency department • Hospitalization
- 22. Hospitalization, ADL Change &Death (Boyd, et al, 2008)
- 23. Uncontrolled Symptoms • Pain •Shortness of breath • Delirium • Agitation • Nausea and vomiting • Constipation • Exhaustion/fatigue/low activity
- 24. Hospital Delirium & SubsequentMortality 12-month mortality: Delirium 41.6%; Non-delirium 14.4% (van Zyk, et al, 2003)
- 25. Cancer and Prognosis •MDs are very good at predicting cure at five years – Correlation 0.92 • MD’s optimistic bias in regard to estimating patient prognosis for incurable disease – In general, over-optimistic by a factor of three • Physician predicted six weeks; patient lived two weeks – Survival predictions become more accurate closer to date of death – Overall clinical prediction significantly correlated with actual survival Christakis et al. BMJ 2000;320:467-473 Mackillop et al. J Clin Epidemiol 1997;50:21-29
- 26. Cancer Hospice Appropriateness • Performancestatus is key determinant – Activity and energy – Lose about 70% in last three months of life • How much time do you spend sitting in a chair or lying down? – >50% then prognosis less than three months • Patients with solid tumor and not receiving chemotherapy prognosis less than six months
- 27. Cancer Prognosis: Helpful Numbers CancerSyndrome Estimated Survival Malignant Hypercalcemia 8 weeks (except newly diagnosed breast or MM) Malignant Pericardial Effusion 8 weeks Carcinomatous Meningitis 8-12 weeks Multiple brain mets 1-2 months no XRT, 3-6 months with XRT Malignant Ascites Less than 6 months Malignant pleural effusion Less than 6 months Malignant bowel obstruction Less than 6 months Fast Fact 13
- 28.
- 29. End-stage Cardiac Disease •Dyspnea and/or fatigue at rest or with minimal exertion (NYHA Class IV) – Ejection Fraction not a predictor of appropiateness • Symptoms despite optimal medical therapy with vasodilators and diuretics, or • Inability to tolerate optimal medical therapy due to hypotension and/or renal insufficiency • Not a surgical candidate • Inotropic support not LVAD or transplant candidate Wright JB, Kinzbrunner BM: Predicting Prognosis: How to decide when end- of life care is needed. Chapter 1 in Kinzbrunner BM, Policzer JS (eds): End- of-Life Care: A Practical Guide. New York: McGraw Hill, 2011, p. 17.
- 30. Study Description Patient Characteristics Enrollment Period 1-year mortality Median Survival REMATCHRCT LVAD VS OMM NYHA III plus inotrope or NYHA IV 1998-2001 75% 5 months COSI Prospective study outpatients on inotropes Stage D outpatients on chronic inotropes 1993-2002 94% 3.4 months COMPANION RCT of CRT vs OMM NYHA III or IV with EF<35% 2000-2002 25% Not available Mortality Optimal Medical Management Arms of Trials
- 31. CHF Outcomes byType Gotsman I et al. Plos One 2012
- 32. Predicting Mortality in HeartFailure Lee DS, Austin PC, Rouleau JL et al. Predicting mortality among patients hospitalized for heart failure. Derivation and validation of a clinical model. J Am Med Assoc 290: 2581, 2003.
- 33. Predicting Mortality in HeartFailure Lee DS, Austin PC, Rouleau JL et al. Predicting mortality among patients hospitalized for heart failure. Derivation and validation of a clinical model. J Am Med Assoc 290: 2581, 2003.
- 34. End-Stage Pulmonary Disease Disablingdyspnea as demonstrated by: • Dyspnea at rest or with minimal exertion • Dyspnea poorly responsive to bronchodilators – FEV-1 < 30% predicted, post-bronchodilator Progressive pulmonary disease as manifested by: • Multiple hospitalizations, ER visits or doctor’s office visits • Cor pulmonale Wright JB, Kinzbrunner BM: Predicting Prognosis: How to decide when end- of life care is needed. Chapter 1 in Kinzbrunner BM, Policzer JS (eds): End- of-Life Care: A Practical Guide. New York: McGraw Hill, 2011, p. 16.
- 35. End-Stage Pulmonary Disease (Cont.) Otherindicators of a poor prognosis • Body weight – < 90% ideal body weight or – > 10% weight loss • Resting tachycardia > 100/min • Abnormal ABGs or O2 saturation – pO2 < 55 mm Hg – O2 saturation < 88% – pCO2 > 50 mm Hg • Continuous oxygen therapy
- 36. BODE Index forCOPD Celli BR, Cote CG, Marin JM, et al. The body-mass index, airflow obstruction, dyspnea, and exercise capacity index in chronic obstructive pulmonary disease. N Engl J Med 350:1005, 2004.
- 37. BODE Index forCOPD (Cont.) Celli BR, Cote CG, Marin JM, et al. The body-mass index, airflow obstruction, dyspnea, and exercise capacity index in chronic obstructive pulmonary disease. N Engl J Med 350:1005, 2004. Quart 1: 0-2 Quart 2: 3-4 Quart 3: 5-6 Quart 4: 7-10
- 38. Dementias • Progressive functionaldecline • Dependence in 3/6 activities of daily living (bathing, dressing, feeding, continence, ambulation and feeding) • Disease-related complication within last six months Wright JB, Kinzbrunner BM: Predicting Prognosis: How to decide when end- of life care is needed. Chapter 1 in Kinzbrunner BM, Policzer JS (eds): End- of-Life Care: A Practical Guide. New York: McGraw Hill, 2011, p. 19.
- 39. Dementias and OtherEnd Stage Neurodegenerative Disorders Patient experienced complication in the last six months: • Pneumonia • Pyelonephritis or upper urinary tract infection • Septicemia • Two or more pressure ulcers: Stage III or IV • Febrile episodes • Altered nutritional status (weight loss 10% six months) • Eating difficulty including feeding tube decision • Hip fracture with or without repair Wright JB, Kinzbrunner BM: Predicting Prognosis: How to decide when end-of life care is needed. Chapter 1 in Kinzbrunner BM, Policzer JS (eds): End-of- Life Care: A Practical Guide. New York: McGraw Hill, 2011, p. 19.
- 40. Natural History ofDementia 6-month mortality 38.6% 6-month mortality 44.5% 6-month mortality 46.7% • Median survival was 478 days, 24.7% within 6 months • 54.8% died, 93.8% in NH Mitchell, et al. NEJM 2009
- 41. End-Stage Cerebrovascular Disease Acute End-StageCVA Patient has one or more of the following at least three days after an acute stroke: • Coma • Persistent vegetative state • Severe obtundation with myoclonus • Postanoxic encephalopathy Wright JB, Kinzbrunner BM: Predicting Prognosis: How to decide when end- of life care is needed. Chapter 1 in Kinzbrunner BM, Policzer JS (eds): End- of-Life Care: A Practical Guide. New York: McGraw Hill, 2011, p. 22.
- 42. One and TwoMust Be Present 1.INR>1.5 or serum albumin <2.5gm/dl 2.Evidence end-stage liver disease •Ascites refractory to treatment •SBP •HRS •Encephalopathy •Recurrent variceal bleeding End-Stage Liver Disease
- 43. Other supportive features •Progressivemalnutrition •Muscle wasting with decreased strength/endurance •Ongoing ETOH use •HCC End-Stage Liver Disease (Cont.)
- 44. AIDS and HIVDisease • RNA viral load – > 100,000 persistently – < 100,000 • Refusing anti-retrovirals • Declining functional status • HIV related opportunistic illnesses • Other factors – Chronic persistent diarrhea – Age > 50 – Substance abuse – Symptomatic CHF – Decision to forgo therapies Wright JB, Kinzbrunner BM: Predicting Prognosis: How to decide when end- of life care is needed. Chapter 1 in Kinzbrunner BM, Policzer JS (eds): End- of-Life Care: A Practical Guide. New York: McGraw Hill, 2011, p. 24.
- 45. ESRD without Dialysis Guidelines AcuteRenal Failure •Not seeking dialysis/transplant •CrCl<10 (15 in DM) •Serum Cr >8.0 (6.0 DM) *co-morbid conditions: mechanical ventilation, cancer, chronic lung disease, advanced cardiac disease and advanced liver disease
- 46. ESRD without Dialysis Guidelines(Cont.) Chronic Renal Failure •Not seeking dialysis/transplant •CrCl<10 (15 DM) •Serum Cr >8.0 (6.0 DM) *signs and symptoms renal failure: uremia, oliguria, hyperkalemia, uremic pericarditis, volume overload not responsive treatment
- 47. Age and Survival Kurella,Ann Intern Med, 2007
- 48. Kurella, Ann InternMed, 2007 Functional Status and Survival
- 49. Kurella, Ann InternMed, 2007 Comorbidity and Survival?
- 50. Kurella Tamura, NEngl J Med, 2009 Change in Functional Status After Initiation of Dialysis
- 51. Malnutrition or Not OtherwiseSpecified *A low albumin level due to nephrotic syndrome is excluded from the diagnosis of malnutrition “WHY is the patient appropriate for hospice now?”
- 52. Determining Prognosis • Clinicaljudgment • Nutrition • Physical function • Cognition • Health Care utilization • Symptoms • Disease specific decline
- 53.
Editor's Notes
- #5 We Do Not Like to Talk About It
- #15 Weight loss represents a key determinant of a poor prognosis which is readily obtainable for no significant additional cost. Two studies that demonstrate this point are highlighted on the slide. The first study looked at long-term care residents who did and did not have a weight loss of at least 5% in the preceding month. Those residents who lost 5% weight in 1 month were 5 times more likely to die compared to those who did not lose that much weight over the ensuing year. The second study examined weight loss (5% of body weight in last 6 months) among community-dwelling outpatients in Palo Alto California. Importantly, 35% of the sample had no identifiable cause of weight loss even after extensive evaluation. Among patients with weight loss, 25% had died over the ensuing year.
- #18 This is one of many studies that demonstrates the relationship of PPS with mortality. The lower the PPS the higher the mortality. The graph displayed demonstrates survival among a cohort of 277 patients evaluated on the Pain and symptom consult service at UNC. Importantly, a PPS of 50 is associated with a 50% survival around 180 days whereas a PPS of 10% has a 50% survival of days. Similar findings between PPS score and mortality have been found in hospice populations.
- #19 Again, ADL impairment is highly correlated with mortality and the greater the number of ADL impairments the greater the mortality. This is displayed in the slide were you can see the relationship between ADL difficulty and survival by cox-proportional hazzard modeling. In this study of nationally representative community-dwelling older adults those with no ADL impairment lived on average 10.6 years compared to those with complete ADL impairment who lived an average of 1.6 years after taking into account age, gender, ethnicity, and comorbid conditions. A little later we will examine the relationship between ADL loss surrounding a hospitalization and subsequent mortality to further emphasize this point. ADL=0 no difficulty- eat, toilet, bathe, and walk without difficulty ADL=1 Mild difficulty- ADL=2 moderate difficulty ADL 3=severe difficulty ADL IV complete difficulty
- #20 Older adults commonly fall and recurrent falls put older adults at an increased risk of dying. The relationship between fallers and non-fallers is displayed on the slide derived from community swelling older adults in Alabama. A cohort of 125 community dwelling older adult fallers were matched to other community dwelling older adults and differences in survival were compared. As you can see from the graph, fallers were significantly more likely to die compared to non-fallers with 25% of those who fell dying over the next year. The cause of death is also listed and it is important to recognize that many of the conditions may not readily be attributable to a fall which re-enforces the point that falls often serve as a proxy of underlying disease severity.
- #21 Another important contributor to functional decline is cognition. Cognitive decline commonly occurs with the progression of chronic illness such as CHF, COPD, and cancer independent of whether or not an underlying dementia is present. Cognitive status can quickly be assessed by ascertaining orientation, wakefulness, ability to communication and interaction with the environment. A more comprehensive assessment of cognitive status is the Folstein mini-mental status exam which was developed as a measure of overall global cognitive function. Cognitive performance ranges from 30 to 0 with higher scores indicating better cognitive function. Overall performance can be used to categorize cognitive functioning into intact, mild impairment, moderate impairment, and severe impairment. We are going to go over the MMSE since some programs routinely use the measure and it is commonly scored incorrectly.
- #22 Health care utilization is also a powerful predictor of subsequent mortality among older adults. Increased health care utilization is commonly used to help demonstrate a patient’s prognosis is 6 months or less with hospitalization being the most commonly studied. The slide indicates the health care utilization of out patient KP over the past 6 months. On the next slide we will look at the relationship between ADL decline during a hospitalization and subsequent mortality.
- #23 The slide displays the results of a study that examined the relationship between recovery of ADL loss during a hospitalization and subsequent ongoing decline or death. For example, at 6 months, the group of patients that had no ADL decline surrounding an index hospitalization found 11% had died, 15% had developed functional decline, and 74% had maintained functional abilities. On the other hand, patients who experienced functional decline in ADL’s during the hospitalization found almost 33% had died, 34% had additional ADL decline, and only 36% maintained the level of ADL at hospital discharge. Of note, 41.3% of patients hospitalized and had functional decline were dead 1 year later.
- #24 The last indicator of functional status we are going to discuss today is symptoms. Many studies from different disease states demonstrate the relationship between uncontrolled symptoms and subsequent mortality. For example, in patients with CHF shortness of breath or fatigue with minimal exertion (NYHA class III) or at rest (NHYA class IV) with optimal medical management support a prognosis of 6 months or less and hospice appropriateness. As a result, a patient’s assessment should incorporate how physical and psychological symptoms are associated with or impacting the patient’s decline. For example, nausea has lead to reduced oral intake and contributed to the 10% weight loss. One of the most common symptoms that present in hospice appropriate patients is delirium. Delirium is an acute state of confusion with poor attention that fluctuates over the course of the day and may or may not be associated with hallucinations. Delirium is a predictor of poor prognosis as demonstrated on the following slide.
- #25 The slide displays the findings of an observational cohort study in Canada in which hospitalized patients with (243) and without (118) delirium were followed after hospital discharge. Patients with delirium at the time of hospital discharge had a 12 month mortality rate of 41.6% compared to 14.4% among patients discharged without delirium. The study demonstrates the significantly increased risk of mortality when delirium is present.
- #26 Longer MD knew patient the less likely able to predict prognosis 20% of predictions accurate (defined as within 33% of survival) May lead to late referral to hospice- more beneficial when earlier May lead patients to elect for futile care
- #27 Exception not receiving chemo and good functional status is prostate and breast
- #31 Information about prognosis for patients with very advanced heart failure in an era of more sophisticated heart-failure therapies is available from several recent studies. The Randomized Evaluation of Mechanical Assistance for the Treatment of Congestive Heart Failure (REMATCH) study was a randomized controlled trial of destination LVAD versus optimal medical management (OMM) for patients with inotrope-dependent Class III or Class IV heart failure. Sixty-one patients were enrolled in the OMM arm of the study. Their mortality was 50% at 6 months, 75% at 12 months, and almost 100% at 2 years. The Continuous Outpatient Support with Inotropes (COSI) study followed 36 patients on home inotropic support. Mortality for these patients was 60% at 6 months and 94% at 1 year. Multiple randomized controlled trials comparing CRT with OMM have been published.324,328 In the Comparison of Medical Therapy, Pacing, and Defibrillation in Heart Failure (COMPANION) study, 308 patients with Class III or IV heart failure and EF lower than 35% were enrolled in the OMM arm. Twenty-five percent of these patients died during the 12-month study period.320
- #32 Clinical sample of patients recruited from an inpatient hospital stay and followed over several years. 35-50% CHF admits secondary to diastolic dysfunction. No difference in survival from those with diastolic and systolic dysfunction. In diastolic dysfunction functional status a big predictor of survival. Simial rates of hospitalization as well
- #41 Another study I always like to highlight to further demonstrate this point is displayed on the slide. Over an 18 month study period, 323 residents that lived in the NH and had a cognitive performance score of 5 or 6 (a score of 5 is approximately an MMSE of 5.1) and a global deterioration score of at least 7 (inability to recognize family, incontinent, functionally dependent, unable to ambulate). 54.8% died in 18 mo; 24.7 % died in the 1st 6 mo. Median survival was 478 days. The figure has the cumulative incidence of each event, mortality rates at 6 months after the incident is at the side. In other words, during the 18month study period, 41.1% had pneumonia, 52.6% had a febrile episode, and 85.8% had an eating problem. The 6 month mortality rates after each event is listed above (46.7, 44.5, and 38.6% respectively). The mortality rates were substantially higher in the group that developed these complications compared to those who did not have a complication.
- #46 Importantly guidelines state other factors may indicate a prognosis of 6 months or less and should be taken into account when considering a patient appropriate for hospice services
- #51 Figure 2. Change in Functional Status after Initiation of Dialysis. Data were missing for 549 nursing home residents at 3 months, 696 residents at 6 months, 823 residents at 9 months, and 787 residents at 12 months from the full analytic cohort of 3702 residents.