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Managing Patients with End-of-Life Issues Maggie Selby, RN,MSN,CHPN Medical Grand Rounds April 3, 2009 Topics for Today Discuss barriers to timely/effective management of patients with end-stage disease. Discuss effective approaches to a patient/family facing life-limiting illness. Discuss sources for learning to effectively identify/manage end-stage disease. Causes of Death and Demographic/Social Trends Early 1900’s Current Medicine’s Focus Comfort Cure Cause of Death Infectious Diseases Communicable Diseases Chronic Illness Age Adjusted Death Rate 1720 per 100,000 (1900) 865 per 100,000 (1997) Average Life Expectancy 50 76 males Number of Persons> 65 years old 3.1 million 35 million (estimate fo 2000) Site of Death Home Institutions Caregiver Family Strangers/Healthcare Providers Disease/Dying Trajectory Relatively short Prolonged 80 females Impact on Patients Longer life (76 instead of 50 years). Progressive chronic illnesses leading to death…years of symptom management More chance of becoming physically dependent. Impact on Families Support systems are weakened by geographical distances. Isolation from the illness/death experience leads to lack of knowledge and increased discomfort with death. Greater risk of increased, profound response to loss (grief). Impact on Our Work Older patient population - >65 Larger number with chronic progressive illness Many of our patients have end-stage disease. Growing feeling of frustration – feeling unable “to help”. If we can’t “fix it”. Patients/clients & families also feel helpless to manage illnesses; to control elements of healthcare. “In American death is optional…” PBS documentary Focus on curative measures…exclude comfort care. Patient’s view of the physician’s role…physician knows what is best; can cure all things. Professionals’ unfamiliarity/discomfort with care of the terminally ill client. Cultural and religious beliefs. Physician’s view of death as failure. Patient’s view of disease/death as punishment. Death in America… The majority of American adults surveyed ( 85%) responded that they wanted to be cared for and to die at home…according to a survey by the National Hospice and Palliative Care Organization. Death in America… Where do people die: Hospital – 56% Nursing Homes – 22% Home – 22% What Americans fear… Pain and suffering…prospect of prolonged death, life sustaining technology, debilitating treatment, pain and other unrelieved symptoms. Isolation…abandonment by healthcare providers, burdening their families. Families feeing inadequate to care for loved ones at home. Financial resources. ruin…depletion of all financial Barriers to Timely/Effective End-of-Life Care Reluctance to talk about the subject. Personal and sensitive issues. Don’t recognize end-stage illness. Believe doctors (hospital) can cure everything. Don’t know where to get guidance or support with EOL issues. Barriers to Timely/Effective End-of-Life Care Some physicians/nurses view approaching death as a personal or professional ”failure”. Lack of knowledge or awareness of symptoms of end-stage disease. Discomfort/lack of skill at “giving bad news” or managing end-stage disease effectively. Reluctance to “take away hope”. View: Death is Medical Failure The human body, under the pressure of illness and treatment…wears out. The human spirit, under the pressure of disease and treatment…becomes tired. Lack of awareness of end-stage illness Every chronic illness comes to an “endstage” or “terminal” state. Point at which aggressive treatment is not effective; palliative care is advised. Recognizing “end-stage” illness Guidelines by National Hospice and Palliative Care Organization and Medicare. Terminal Illness Definitions: – “Terminal illness” – one which cannot be cured, which will cause or contribute to the patient’s death. – Time frame may be 3, 6, 12 months away. – “Imminently dying”- death expected within days or weeks…identifiable signs. – “Actively dying” – process has begun, may last days, hours. Barriers: Physician Response How to “give bad news”. How to begin to manage end-stage illness. Communication with patient and families. Reluctance to “ take away hope”. Importance of physician relationship with patient… Telling the truth does not necessarily take away hope. Hope is fostered by an honest and open relationship with the physician/healthcare provider. Trust is a key to maintaining hope. Patient’s worst fear is not death but abandonment by the healthcare provider. Ferrell and Coyle, Textbook of Palliative Nursing, Oxford Press, 2007, p. 343 Open, supportive communication Not: “There’s you.” nothing else we can do for Rather: “You need a different kind of care now.” Palliative Care The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families. Goals of palliative care: defined by the patient & family. Comfort... Physical symptom control…aggressive. Emotional/psychological support…no holds barred Spiritual support…not necessarily religion. Successful end of life closure… Patient accomplishes what he/she wants to. **All palliative care is not hospice; all hospice care is palliative care. End stage disease criteria Cardiovascular – Edema not responsive to diuretics. – Ejection fraction < 30%. – Secondary organ failure. – History of cardiac arrest/syncope. – Transplant failure or not a candidate. End stage disease criteria Lung disease – – – – – Oxygen saturation <88% with oxygen. Oxygen dependent. Loss of lean body mass. Bronchospasms not responsive to medications. Increase in frequency and severity of infections. – Symptomatic at rest = HR>100. – PCO2 > 50 mm HG End stage disease criteria Neurological (Alzheimer’s, multi- infarct dementia, CVA,Parkinson’s) – Progressive or disabling dementia. – Level 7-C on the FAST scale (unable to ambulate, communicate intelligently, incontinent). – History of frequent infections. – Patient/family do not want treatment of infections, or feeding tubes. – If feeding tube in place, pt. must have other life-limiting illness which contributes to a poor prognosis. – Significant weight loss over the past several months. End stage disease criteria Liver Disease – – – – – Hepatic encephalopathy. Advancing cirrhosis. Jaundice, ascites and edema. Esophageal varices. Diffuse hemorrhage secondary to coagulation defects. – Transplant failure and/or not a candidate. End stage disease criteria Diabetes – – – – Severe vascular insufficiencies. Maximal activity is bed to chair. Retinopathy. Neuropathy. Renal Failure – Discontinued or refuses dialysis. – Transplant failure or not a candidate. – Progressively worsening uremia. End stage disease criteria AIDS – Antiviral treatment failure – Prolonged treatment has failed or not desired. – Antibiotic treatment not desired (except CMV retinitis) – Transfusions of blood products not desired. – Progressive disease of brain. End stage disease criteria Debility, unspecified – Multiple organ system dysfunction. – Significant CNS impairment but insufficient number of end-stage neurological criteria. – Significant cardiopulmonary failure but insufficient end-stage cardiovascular criteria. – Poor functional status. Karnosfsky Performance Scale 100 90 80 70 60 – Normal, no complaints, no evidence of disease, no limitation. – Able to carry on normal activity, minor signs of symptoms of disease. –Normal activity with effort, some signs or symptoms of disease. – Cares for self, Unable to carry on normal activity. – Requires occasional assistance. Able to care for most of own needs. Karnosfsky Performance Scale 50 – Requires considerable assistance and frequent medical care. 40 – Disabled. Requires special care and assistance. 30 – Severely disabled. Hospitalization may be indicated. Death not imminent. 20 – Hospitalization necessary (under non-hospice circumstances). Very ill. 10 – Moribund. Fatal processes progressing rapidly. Actively dying. 0 - Dead Functional Assessment Staging FAST 1-No difficulty either subjectively or objectively 2-Complaining of forgetting location of objects. Subjective work difficulty. 3-Decreased job functioning evident to coworkers Difficulty traveling to new locations Decreased organization capacity. FAST cont. 4-Decreased ability to perform complex tasks such as: – Planning dinner for guests – Handling personal finances e.g. (forgetting to pay bills). – Difficulty shopping, etc. 5-Requires assistance in choosing proper clothing to wear for the day, season or occasion. Repeatedly observed wearing the same clothing unless supervised. FAST cont. 6- Improperly putting on clothes without assistance or cueing. Unable to bathe properly Unable to handle mechanics of toileting Urinary incontinence Fecal incontinence. FAST cont. 7- Limited ability to speak less than 6 intelligible different words in an average day or interview. Speech ability is limited to the use of a single intelligible word in a normal interaction. Repetitive actions. Ambulatory ability is lost – cannot walk without assistance. Individual falls over if no lateral arm rests on chair. Loss of ability to smile. Loss of ability to help up head independently. Hospice Medicare Benefit Criteria necessary to qualify – Life expectancy approximately 6 months or less, given expected course of illness. – Two (2) physician certification of terminal illness. – Patient/family choose palliative not curative measures. – Patient and family desire hospice care. Hospice Medicare Benefit Coverage – Medications* – Equipment* – Supplies and services* – (All related to the terminal illness. Could include ambulance, lab, X-ray, radiation therapy). – Medicare, Medicaid, Insurance, Veterans’ Services - Resources End-of-Life Physician Consortium www.EPEC.net – Dr. Tracy Marx, OUCOM Ohio Hospice and Palliative Care Organization www.ohpco.org – Hospice – Advance Directives – Ohio DNR Law information Physician Orders for Life Sustaining Treatment (POLST) Respecting Choices – advance care planning www.respectingchoices.com
