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End of Life Care: An Overview Objectives Address issues surrounding end-of-life care and vulnerable older adults - definition of palliative care - logistics of end-of life-care - surrogate decision making and advance directives - symptom management ACOVE indicators and EOL care WHAT IS PALLIATIVE CARE? Interdisciplinary Goal : to prevent and alleviate suffering assist towards the best possible quality of life optimize function assist with decision making for patients with serious illness and their families. Can be the main focus of care or offered concurrently with all other life - prolonging medical treatment. END-OF-LIFE DEMOGRAPHICS The majority of deaths occur in elderly adults Very ill patients may spend much of their final time at home, but… Hospitals or nursing homes are actual location of most deaths There is regional/ geographic variability in location of deaths (home vs. institution) Adapted from Geriatrics Review Syllabus, Sixth Edition END-OF-LIFE (EOL) IN THE U.S. For elderly, death is typically slow and associated with chronic disease Patients experience increased dependency in their care needs EOL care can be complicated by family stress, poor symptom control, and discontinuity of care In this age of technology, commonly decisions need to be made about the use of these agents Adapted from Geriatrics Review Syllabus, Sixth Edition SUDDEN DEATH, UNEXPECTED CAUSE < 10%, MI, accident, etc. Health Status Time Death Steady Decline Short “Terminal Phase” SLOW DECLINE Periodic Crises, Sudden Death Curative / Life Prolonging Presentation Adapted from Institute of Medicine Death Sx Control / Palliative Care Historical trajectories of care pathways Consider an alternative trajectory… Inclusion of palliative concepts from time of diagnosis This piece of the care plan may become more prominent as curative therapies are less available More gradual transitions at the end of life Curative / Remissive Therapy Death Presentation Palliative Care Hospice Adapted from EPEC curriculum, 1999 WHAT IS “HOSPICE”? Location Group Organization that provides care for the dying patient Approach to care Place for the care of dying patients Philosophy of care for the dying patient A Medicare benefit Adapted from Geriatrics Review Syllabus, Sixth Edition THE HOSPICE MEDICARE BENEFIT For beneficiaries with an expected prognosis of 6 months or less Exchange curative treatments for symptomatic/ palliative treatments Can be revoked at any time Reimbursed per diem for one of four levels of care Can be utilized in the home, nursing home, inpatient hospice units See referenced reading, AAHPM Bulletin THE HOSPICE MEDICARE BENEFIT Covered Services physician services, nursing care medical equipment and supplies medications related to the terminal illness designated short-term inpatient care (symptom management & respite) PT or OT based on the goals bereavement services home-health aide services OBSTACLES Limited access, i.e. rural areas Logistical support Late referral – median duration time spent with hospice is only 21 days (Hospice Association of America 2006) Difficulties in determining prognosis PROGNOSIS More straightforward for cancer diagnosis Often unpredictable for chronic disease COPD Alzheimer’s Disease Heart disease Failure to Thrive/ Debility PROGNOSIS In general: Patient’s condition is life limiting, and pt/ family are aware Pt/ family have elected relief of sx treatment goals rather than curative goals Pt has either documented clinical progression of disease or documented recent impaired nutritional status related to the terminal process Karnofsky Scale DELIVERING BAD NEWS Prepare Plan an agenda Ensure availability of all medical facts Pick an appropriate setting Minimize interruptions What does the patient understand? What does the patient want to know? Deliver the news Be straightforward, avoiding medical jargon Provide a “warning shot” Allow time for discussion Create a plan and organize for follow-up DECISION MAKING Autonomous choices are voluntary, adequately informed and based on reasoning Does the patient have the ability to choose? Does the patient understand pertinent information? Does the patient appreciate the clinical situation/ choices/ consequences? Can the patient reason through choices? The patient identifies the goal(s). The plan follows the goal. SURROGATE DECISION MAKING May be required with both younger and older adults Specific surrogate may be identified via a DPOA (durable power of attorney) for health care Goal of surrogate is to advocate for patient based on what they know of patient’s wishes - based on prior discussions, advance directives/ living wills SOME DEFINITIONS Durable Power of Attorney for Health Care Living Will Appointing someone to make medical decisions for you if you cannot make them yourself Does not require presence of AD or living will Description of wishes about life sustaining medical treatments if one is terminally ill Advance directives Instructions / guidance for for health care should one become incapacitated Can name an “agent” to make decisions for them Wishes stated must be honored by surrogate unless court orders otherwise Can be revoked at any time DECISION MAKING If a patient cannot make their medical decision and has not identified a surrogate decision maker, does not have an advance directive, or has not made their wishes known, a surrogate may have to be identified. Some states have an automatic order of priority for identifying surrogates Kansas and Missouri have no such statues available OTHER PALLIATIVE CARE ISSUES Symptom management Cross-cultural issues Spiritual concerns Psychosocial issues See recommended readings for further information SYMPTOM MANAGEMENT Multiple symptoms of concern near the end of life - Pain - Dyspnea - Constipation - Nausea - Anxiety - Delirium - Fatigue - Anorexia PAIN Treatment based on assessment - severity - nociceptive vs. neuropathic - step-wise approach Potential modalities - Non-opioid acetominophen NSAIDs/ COX-2 –I - Opioid - Adjunctive Anti-convulsants Steroids TCAs And now a little about opioids… Bind to one or more of the opiate receptors (mu, kappa, delta) Mu receptor is 7 transmembrance G protein coupled receptor - binding stabilizes the membrane so neuron doesn’t fire Where are the mu receptors? - periphery, dorsal root ganglia of spinal cord, periaqueductal grey of brainstem, midbrain, gut Opioids “weak” opioids - codeine - hydrocodone - oxycodone “strong” opioids - hydromorphone - fentanyl - morphine Opioids Distribution - Hydrophilic * morphine, oxycodone, hydromorphone - Lipophilic * fentanyl, methadone Opioids IV- morphine, hydromorphone, fentanyl PO- morphine (LA & SA), oxycodone (LA & SA), hydromorphone, methadone, fentanyl, hydrocodone Transdermal- fentanyl Initial decisions based on - route of administration - need for continuous vs. intermittent dosing - severity of pain LA= long acting SA= short acting Opioids-Pharmacology All water soluble opioids behave similarly: Cmax is 60-90 minutes after PO dose 30 minutes after SQ or IM 6-10 minutes after IV dose All are conjugated in liver and 90% excreted via the kidney With normal renal fx, all have ½ life of 3-4 hours, reach steady state in 4-5 ½ lives Special Notes Morphine - low protein binding - dialyzes off - active metabolite is morphine 6- glucuronide (10%) * accumulates in renal failure and causes neuroexcitation * prolonged CNS effects Special Notes Fentanyl - little or no active metabolites - Not dialyzable - Elderly more sensitive to effects - Unclear how TD route is affected by low subcutaneous fat Hydromorphone - Generally considered to have inactive metabolites - Drug of choice with renal failure Special Notes Methadone - binds mu and blocks NMDA receptors - highly protein bound - highly variable and prolonged half life - Phase I metabolism and may prolong the QT interval - caution when changing from another opioid to methadone Potential opioid side effects Nausea CNS depression/ sedation Pruritis Constipation Delirium Endocrine dysfunction with long term use DYSPNEA Subjective symptom Pathophysiology can reflect disorder in regulation or act of breathing Treatment directed at underlying cause - Most common reversible causes bronchospasm, hypoxia, anemia - Both non-pharmacologic and non-pharmacologic treatments can be helpful - Opioids used for sx relief when more directed therapy doesn’t reverse the dypsnea NAUSEA Potentially debilitating symptoms near the end of life Treatment based on source - Brain chemoreceptor trigger zone, cerebral cortex, vestibular apparatus - GI tract obstruction, motility, mucosal irritation www,aafp.org, Sept.1, 2001, Vol.64, No.5 DELIRIUM Common near the end of life - geriatric patients with multiple risk factors for development Large number of cases can be reversible Control of delirium may be important for both patient and family - pharmacologic and non-pharmacologic means ACOVE Indicators Assessing Care of Vulnerable Elders Comprehensive set of quality assessment tools for ill older adults - Covering domains of prevention, diagnosis, treatment, and follow up Designed to evaluate health care at system level rather than individual level DECISION MAKING (ACOVE) If a vulnerable older adult is admitted directly to the intensive care unit (from the outpatient setting or emergency department) and survives 48 hours, THEN within 48 hours of admission, the medical record should document consideration of the patient’s preferences for care or that these could not be elicited or are unknown DECISION MAKING (ACOVE) ACOVE indicator for quality care of the older adult: 1) If a vulnerable older adult with dementia, coma, or altered mental status is admitted to the hospital, THEN within 48 hours of admission, the medical record should contain an advance directive indicating the patient’s surrogate decision maker Document a discussion about who would be surrogate decision maker or a search for a surrogate, or Indicate that there is no identified surrogate 2) 3) DECISION MAKING (ACOVE) If a vulnerable older adult carries a diagnosis of severe dementia, is admitted to the hospital, and survives 48 hours, THEN within 48 hours of admission, the medical record should document consideration of the patient’s previous preferences for care or that these could not be elicited or are unknown DECISION MAKING (ACOVE) All vulnerable older adults should have in their outpatient charts 1) An advance directive indicating the patient’s surrogate decision maker, or 2) Documentation of a discussion about who would be a surrogate decision maker or a search for a surrogate, or 3) Indication that there is no identified surrogate CASE 1 (1 of 3) A 79-year-old man with a history of prostate cancer has had worsening back pain for 3 weeks. He recalls no recent accident or injury. The pain limits the patient’s ability to dress and bathe himself. He cannot get comfortable in bed and has been sleeping in a reclining chair for the past few nights. He took acetaminophen with codeine last night with no relief. Physical examination is normal except for tenderness on palpation over the lower spine. Bone scan demonstrates metastatic disease in the lumbar spine and pelvis. CASE 1 (2 of 3) Which of the following is the most appropriate initial management strategy for this patient’s pain? (A) (B) (C) (D) (E) Immediate-release oxycodone Sustained-release oxycodone Propoxyphene Transdermal fentanyl Acetaminophen with codeine CASE 1 (3 of 3) Which of the following is the most appropriate initial management strategy for this patient’s pain? (A) (B) (C) (D) (E) Immediate-release oxycodone Sustained-release oxycodone Propoxyphene Transdermal fentanyl Acetaminophen with codeine CASE 2 (1 of 3) For the third time in 6 months, an 84-year-old man with advanced dementia is admitted to the hospital for aspiration pneumonia. He has lost 9.5 kg (20 lb) over the past 10 months and has a sacral pressure ulcer. He is nonverbal, unable to ambulate, and dependent for all ADLs. His wife cares for him at home. He does not want to go to a nursing home. A swallow study indicates that all food consistencies are unsafe. The hospitalist suggests tube feeding. The advanced care plan states that the patient’s wife is his agent and that he does not want extraordinary measures used to extend his life, including artificial nutrition. CASE 2 (2 of 3) What is the most appropriate recommendation for this patient? (A) Long-term placement of a feeding tube and discharge to a skilled nursing facility (SNF) (B) Short-term placement of a feeding tube and discharge to a SNF until the pressure ulcer heals (C) Discharge to a SNF for wound care until the pressure ulcer has healed CASE 2 (3 of 3) What is the most appropriate recommendation for this patient? (A) Long-term placement of a feeding tube and discharge to a skilled nursing facility (SNF) (B) Short-term placement of a feeding tube and discharge to a SNF until the pressure ulcer heals (C) Discharge to a SNF for wound care until the pressure ulcer has healed CASE 3 (1 of 3) A 67-year-old woman with terminal metastatic ovarian cancer presents with a 2-day history of nausea and vomiting. She has been unable to tolerate any oral intake and has not had a bowel movement in 4 days. The patient is reluctant to undergo further invasive procedures or hospitalization. Medications are acetaminophen with codeine as needed and docusate sodium stool softener every morning. The patient appears uncomfortable. No fever, BP 98/60, pulse 105, tachycardia. Abdomen is markedly distended with decreased bowel sounds, tympany on percussion, diffuse tenderness on palpation. Rectal exam is normal. CASE 3 (2 of 3) In addition to providing the patient with morphine, which of the following is the most appropriate management strategy? (A) Diverting colostomy (B) Nasogastric suctioning (C) Octreotide (D) Atropine (E) Ondansetron CASE 3 (3 of 3) In addition to providing the patient with morphine, which of the following is the most appropriate management strategy? (A) Diverting colostomy (B) Nasogastric suctioning (C) Octreotide (D) Atropine (E) Ondansetron SUMMARY The goal of palliative care is to relieve suffering and assist patients with serious illness and their families with medical decision making Advance directives are an important way to facilitate this and are viewed as an important quality indicator Learning to communicate these issues in key Palliative care also encompasses a wide realm of symptom management, as well as support surrounding psychosocial and spiritual issues REFERENCES AGS Panel on Persistent Pain in Older Persons, “ The Management of Persistent Pain in Older Persons,” Journal of the American Geriatrics Society, June 2002, Vol. 50, No.6 supplement Finucane, Christmas, and Travis, “Tube Feeding in Patients with Advanced Dementia: A Review of the Evidence,” JAMA, Oct. 13, 1999, Vol. 282, No. 14 Ganzini et al, “Ten Myths about Decision-Making Capacity,” Journal of the American Medical Directors Association, May/ June 2005 Tulsky, “Beyond Advance Directives: Importance of Communications Skills at the End of Life,” JAMA, July 20,2005, Vol. 294, No. 3 Ross and Alexander, “Management of Common Symptoms of Terminally Ill Patients: Part I,” American Family Physician, Sept. 1, 2001, Vol. 64, No. 5 Ross and Alexander, “Management of Common Symptoms of Terminally Ill Patients: Part II,” American Family Physician, Sept. 15, 2001, Vol. 64, No. 6 http://aspe.hhs.gov/daltcp/reports/impquesa.htm (Click to Appendix C for prognosis guidelines) ADDITIONAL REFERENCES “Health Care Decision Making Web Module for Medical Students.” Developed by Dr. Christine Hayward, Carla Herman. University of New Mexico School of Medicine. Funded by Donald W. Reynolds Foundation, John A Hartford Foundation. Web-based, self directed learning module EPEC Participant’s Handbook 1999 Geriatric Review Syllabus 6 teaching slides Kinzbrunner, “The Medicare Hospice Benefit,” AAHPM Bulletin Spring 2001,Vol. 1, No. 3 Acknowledgements Dr. Karin Porter-Williamson, Medical Director of the Palliative Care team at the University of Kansas Medical Center For GRS sixth edition teaching slides: Co-Editors: Karen Blackstone, MD & Elizabeth L. Cobbs, MD GRS6 Chapter Authors: Sean Morrison, MD Stacie T. Pinderhughes, MD & R. GRS6 Question Writers: Susan Charette, MD Medical Writer: Barbara B. Reitt, PhD, ELS (D) Managing Editor: Andrea N. Sherman, MS © American Geriatrics Society