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June 9, 2020 Andrea Huertas, Mba, Bsn, Rn Goals & Objectives

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June 9, 2020 Andrea Huertas, Mba, Bsn, Rn Goals & Objectives END-OF-LIFE CARE PART ONE JUNE 9, 2020 ANDREA HUERTAS, MBA, BSN, RN GOALS & OBJECTIVES • JUNE 9TH • COMMUNICATING AT THE END OF LIFE • PAIN MANAGEMENT AT THE END OF LIFE • JUNE 11TH • SYMPTOM MANAGEMENT AT THE END-OF-LIFE • CARE OF THE PATIENT AND FAMILY WHEN DEATH IS NEARING PATIENT CARE: LIFE-LIMITING CONDITIONS IN ADULT PATIENTS • TRAJECTORIES: COMMON END-OF-LIFE DISEASES • PURPOSE OF USING DISEASE TRAJECTORY MODELS • DISEASE TRAJECTORIES TO PATIENT CARE • SIGNS OF IMPENDING DEATH • THE DYING PROCESS & FAMILY SUPPORT • “MOST DISEASES PROGRESS IN A SOMEWHAT PREDICTABLE MANNER. KNOWLEDGE OF THE EXPECTED DISEASE TRAJECTORY IS ESSENTIAL FOR PROGNOSTICATION. ILLNESS TRAJECTORY MODELS ALLOW CLINICIANS TO EXPLAIN AND PREDICT SYMPTOMS ASSOCIATED WITH THE PATIENT’S OVERALL DECLINE IN FUNCTION. MURRAY, KENDALL, BOYD, AND SHEIKH (2005) DESCRIBED THREE COMMON ILLNESS TRAJECTORIES ILLUSTRATING THE PROCESS FROM DIAGNOSIS TO DEATH IN SEVERAL TERMINAL DISEASES (SEE FIGURE 3.1).” • HTTPS://CONNECT.SPRINGERPUB.COM/CONTENT/BOOK/ • TRAJECTORY 1 • IN THE FIRST TRAJECTORY DEPICTED, THE PATIENT EXPERIENCES RELATIVE WELLNESS FOLLOWED BY A SHORT BUT PREDICTABLE PERIOD OF DECLINE LEADING TO DEATH. TRAJECTORY 1 (FIGURE 3.1) IS TYPICALLY ASSOCIATED WITH CANCER DIAGNOSES, AND THE EXPECTED TIME FROM TERMINAL DIAGNOSIS TO DEATH IS APPROXIMATELY 6 MONTHS WITHOUT INTERVENTION. DURING THE PERIOD OF DECLINE, THE PATIENT MAY EXPERIENCE SYMPTOMS OF WEIGHT LOSS, GRADUAL DECREASED ABILITY TO ENGAGE IN ACTIVITIES OF DAILY LIVING, AND A PROGRESSIVE DECLINE IN OVERALL CONDITION. SUCH PATIENTS ARE MOST LIKELY TO ACCESS PALLIATIVE CARE AND HOSPICE SERVICES BECAUSE OF THE PREDICTABILITY OF THE DISEASE PROCESS. • TRAJECTORY 2 • THE SECOND TRAJECTORY, DEPICTED IN FIGURE 3.1, IS CHARACTERIZED BY PERIODS OF RELATIVE WELL-BEING PUNCTUATED BY ACUTE EXACERBATIONS THAT MAY REQUIRE HOSPITALIZATION. AFTER EACH EXACERBATION, THE PATIENT’S LEVEL OF OVERALL HEALTH DECLINES SOMEWHAT, WITH A CLEAR DECLINATORY PATTERN DISCERNABLE OVER TIME. THIS TRAJECTORY IS ASSOCIATED WITH CHRONIC ILLNESSES SUCH AS HEART FAILURE AND CHRONIC OBSTRUCTIVE PULMONARY DISEASE (COPD). THE TIME FROM TERMINAL DIAGNOSIS TO DEATH IS LONGER THAN THE PROCESS IN THE FIRST TRAJECTORY AND MAY SPAN A PERIOD OF 2 TO 5 YEARS OR MORE. • TRAJECTORY 3 • THE THIRD TRAJECTORY (FIGURE 3.1) IS ASSOCIATED WITH CHRONIC CONDITIONS SUCH AS DEMENTIA, FRAILTY, AND DEBILITY. SUCH DISEASES INVOLVE A GRADUAL FUNCTIONAL DECLINE OVER A PERIOD OF 6 TO 8 YEARS WITHOUT ACUTE EXACERBATION. HOWEVER, PATIENTS MAY FALL SUBJECT TO ACUTE ILLNESSES, SUCH AS PNEUMONIA OR CARDIAC EVENTS, THAT UNEXPECTEDLY LEAD TO THEIR DEATH. • HTTPS://CONNECT.SPRINGERPUB.COM/CONTENT/BOOK/ ESTABLISHING GOALS OF CARE • HOW DO WE ESTABLISH AND MAINTAIN PATIENT CENTERED CARE • BENEFIT OF CARE VERSES BURDEN OF CARE • PLAN AND DISCUSS EOL WISHES • HOW AND WHERE CARE IS TO BE PROVIDED • WHO IS A PART OF THEIR JOURNEY OF CARE Hospice Care Palliative Care A type of care for terminally ill and dying patients A type of care aimed at promoting comfort for seriously ill patients whether their condition is terminal or not Bereavement services are provided for up to 1 year after Bereavement services are not always provided the death of the patient Care is primarily delivered in the home Care may be delivered in acute care, long-term care, or other settings Patient chooses to forgo curative treatments Palliative care is provided in conjunction with either curative or end-of-life treatments Covered by the Medicare hospice benefit May or may not be covered by Medicare or other health insurance plans Life expectancy of patient is 6 months or less Life expectancy is not a factor WHEN DEATH IS IMMINENT • WHAT DOES APPROACHING DEATH LOOK LIKE • LAST FEW HOURS • DAYS TO WEEKS PRIOR TO DEATH • AS THE PATIENT’S CONDITION CONTINUES TO DECLINE, PSYCHOLOGICAL AND SPIRITUAL DISTRESS MAY ENSUE. PATIENTS OFTEN EXPERIENCE DEPRESSION, ANXIETY, GRIEF, AND FEELINGS OF ISOLATION DURING THEIR FINAL WEEKS. IN A RECENT STUDY, PATIENTS WHO HAD A DIAGNOSIS OF COPD REPORTED THE HIGHEST LEVELS OF ANXIETY, LIKELY DUE TO ACUTE EPISODES OF DYSPNEA. FEELINGS OF HOPELESSNESS, GENERAL DISSATISFACTION WITH LIFE, AND AN OVERALL SENSE OF SUFFERING WERE COMPARABLE AMONG PATIENTS WHO HAD ADVANCED DISEASE (CHOCHINOV ET AL., 2015). • HTTPS://CONNECT.SPRINGERPUB.COM/CONTENT/BOOK/ • DISCUSSION AROUND DISEASE PROGRESSION • FINAL STAGES OF THE DISEASE • KNOWEDGE OF SIGNS AND SYMPTOMS OF DISEASE PROGRESSION FINAL HOURS TO DAYS • HOSPICE NURSES ARE EXPERTS AT ASSESSING KEY SIGNS OF IMPENDING DEATH AND HAVE AN OBLIGATION TO SENSITIVELY PREPARE FAMILIES FOR WHAT WILL ENSUE IN THE PATIENT’S FINALS DAYS AND HOURS. THE HOSPICE NURSE SHOULD WORK WITH THE HOSPICE TEAM TO PROVIDE EDUCATION ON • SAYING GOODBYE AND RESOLVING CONFLICTS • CREATING MEMENTOS BY RECORDING THE PATIENT’S VOICE, TAKING PHOTOGRAPHS, MAKING HAND CASTS, AND SO ON • FINALIZING FUNERAL ARRANGEMENTS • GATHERING LOVED ONES WHO WISH TO BE PRESENT AT THE TIME OF THE PATIENT’S DEATH (BODTKE & LIGON, 2016) • AS THE PATIENT’S DEATH NEARS, ASSESSMENT AND AGGRESSIVE SYMPTOM MANAGEMENT REMAIN KEY PRIORITIES FOR THE HOSPICE NURSE (BERRY & GRIFFIE, 2015). COMMON SIGNS OF APPROACHING DEATH INCLUDE THE FOLLOWING (BERRY & GRIFFIE, 2015; KEHL & KOWALKOWSKI, 2012; KERR ET AL., 2014): • CONFUSION AND SOMETIMES VISIONS OF LOVED ONES WHO HAVE PASSED AWAY • TERMINAL AGITATION FOLLOWED BY INCREASED SOMNOLENCE, OFTEN LEADING TO UNRESPONSIVENESS • CHANGES IN RESPIRATIONS INCLUDING APNEA, CHEYNE–STOKES RESPIRATIONS, AGONAL BREATHING, AND TERMINAL SECRETIONS • TEMPORAL WASTING • DEHYDRATION • PAIN • CYANOSIS OF EXTREMITIES OR LIPS, COOLING OF EXTREMITIES, HYPERTENSION LEADING TO HYPOTENSION, PERIPHERAL EDEMA, MOTTLING • INCONTINENCE, OLIGURIA, AND EVENTUALLY ANURIA • HTTPS://SUNNYBROOK.CA/ PRACTICE QUESTION IDENTIFY SPECIFIC PATTERNS OF PROGRESSION, COMPLICATIONS, AND TREATMENT FOR CONDITIONS RELATED TO: • HEMATOLOGIC, ONCOLOGIC, AND PARANEOPLASTIC DISORDERS (E.G., CANCER AND ASSOCIATED COMPLICATIONS) • NEUROLOGICAL DISORDERS • CARDIAC DISORDERS • PULMONARY DISORDERS • RENAL DISORDERS • GASTROINTESTINAL AND HEPATIC DISORDERS • DEMENTIA • ENDOCRINE DISORDERS CANCER • CHARACTERISTICS • RISK FACTORS • TUMOR STAGING • TREATMENTS • EOL CARE PRACTICE QUESTIONS CANCER NEUROLOGIC • NERVOUS SYSTEM CONSISTS OF THE CENTRAL AND PERIPHERAL SYSTEMS • DEGENERATIVE NEUROLOGICAL DISORDERS INCLUDE ALS, PD, MD, MG, AND MS. • NEUROVASCULAR DISORDERS INTRACRANIAL ANEURYSMS, AVMS, CAROTID ARTERY DISEASE, AND INTRACRANIAL ATHEROSCLEROTIC DISEASE. • END-OF-LIFE CARE PRACTICE QUESTIONS NEURO CARDIAC • HEART DISEASE IS THE LEADING CAUSE OF DEATH IN THE UNITED STATES. • HEART FAILURE & CAUSE • LEFT-SIDED VERSES RIGHT-SIDED • SIGNS & SYMPTOMS • NYHA STAGING FOR PROGNOSIS • TREATMENT AT EOL PRACTICE QUESTIONS CARDIAC PULMONARY • LUNG CANCER • COPD IS MOST COMMON AMONG THOSE AGE 65 OR OLDER • COPD IS DIAGNOSED USING SPIROMETRY • SIGNS & SYMPTOMS • TREATMENT PRACTICE QUESTIONS PULMONARY DEMENTIA • DEMENTIA IS A FORM OF NEUROCOGNITIVE DISORDER. • INCIDENCE OF DEMENTIA RISES SHARPLY WITH AGE. • THE MOST COMMON FORMS OF DEMENTIA ARE ALZHEIMER'S, VASCULAR, LEWY BODY, AND FRONTOTEMPORAL. • THE FAST SCALE IS USED TO ASSESS FUNCTIONAL STATUS IN PATIENTS WITH DEMENTIA. • HOSPICE ELIGIBILITY REQUIRES A FAST SCALE SCORE OF 7+ FOR PATIENTS WITH DEMENTIA ALONG WITH OTHER CRITERIA. • THE TRAJECTORY OF DECLINE FOR DEMENTIA INVOLVES SLOW DETERIORATION OVER 6-8 YEARS WITH EXACERBATIONS OF ANY UNDERLYING DISEASES. PRACTICE QUESTIONS DEMENTIA CARING FOR THE HOSPICE PATIENT • CANCER DIAGNOSES TYPICALLY FOLLOW A TRAJECTORY OF RELATIVE WELLNESS FOR A PERIOD OF TIME FOLLOWED BY A SHORT, BUT PREDICTABLE, PERIOD OF DECLINE. • LONG-TERM CHRONIC ILLNESSES SUCH AS COPD AND CHF ARE ASSOCIATED WITH ACUTE EXACERBATIONS OF THE DISEASE. AFTER THE ACUTE EPISODES, THE PATIENT DOES NOT RETURN TO THE PREVIOUS LEVEL OF HEALTH AND AN OVERALL DECLINE IN CONDITION IS NOTED OVER TIME. • A GRADUAL DECLINATORY DISEASE TRAJECTORY OVER A PERIOD OF 6 TO 8 YEARS, WITHOUT ACUTE EXACERBATIONS, IS ASSOCIATED WITH DISEASES SUCH AS DEMENTIA, DEBILITY, AND FRAILTY. • HTTPS://WWW.NIA.NIH.GOV/HEALTH/PROVIDING-COMFORT-END-LIFE • A POLST FORM IS A MEDICAL ORDER THAT ENSURES THE PATIENT’S WISHES WILL BE FOLLOWED, EVEN IN EMERGENCY SITUATIONS. • ADS ALLOW PATIENTS TO MAKE THEIR END-OF-LIFE WISHES KNOWN EITHER THROUGH DOCUMENTATION OF A LIVING WILL OR THROUGH NAMING A MEDICAL POWER OF ATTORNEY TO MAKE DECISIONS WHEN THE PATIENT IS NO LONGER ABLE TO DO SO. • PALLIATIVE CARE IS A HOLISTIC APPROACH TO PROMOTING COMFORT THROUGH THE EFFORTS OF AN INTERDISCIPLINARY TEAM. IT CAN BE INCORPORATED INTO ANY STAGE OF THE DISEASE PROCESS AND INTO ANY CARE SETTING. • HTTPS://WWW.NIA.NIH.GOV/HEALTH/PROVIDING-COMFORT-END-LIFE • PALLIATIVE CARE IS A COMPONENT OF HOSPICE, BUT HOSPICE FOCUSES EXCLUSIVELY ON END-OF-LIFE CARE. • PATIENTS WHO ARE ADMITTED TO HOSPICE MUST CHOOSE TO FORGO CURATIVE TREATMENTS. • CLINICIANS CAN USE LOCAL COVERAGE DETERMINATIONS, DISEASE-SPECIFIC CRITERIA, PROGNOSTICATION TOOLS, AND KNOWLEDGE OF DISEASE TRAJECTORIES TO ESTIMATE LIFE EXPECTANCY. • SYMPTOMS RELATED TO IMMINENT DEATH VARY BY THE PATIENT’S EXPECTED MORTALITY, UNDERLYING DISEASE PROCESSES, AND CONCOMITANT ILLNESSES. • IN THE FINAL WEEKS AND MONTHS BEFORE DEATH, PATIENTS OFTEN EXPERIENCE LOSS OF APPETITE AND WEIGHT LOSS, WHICH MAY LEAD TO CACHEXIA. • HTTPS://WWW.NIA.NIH.GOV/HEALTH/PROVIDING-COMFORT-END-LIFE • ARTIFICIAL NUTRITION AND HYDRATION CAN BE CONSIDERED WHEN CONSISTENT WITH THE GOALS OF CARE.
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