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A historical perspective They endeavoured to do good, and to save the lives of others. But we were not to expect that the physicians could stop God's judgements, or prevent a distemper eminently armed from heaven from executing the errand it was sent about...it is not lessening their character or their skill, to say they could not cure those that had the tokens upon them, or those who were mortally infected before the physicians were sent for, as was frequently the case. Daniel Dafoe A Journal of the Plague Year (1722)
A historical perspective Nor doe they (physicians) so much feed the imagination with apprehension of danger, as the understanding with comfort...In many diseases, that which is but an accident, but a symptom of the main disease, is so violent, that the Physician must attend the cure of that... John Donne Meditation VII (1624)
A historical perspective Billy: Oh yeah. We see stuff like this in our ER all the time... Guys come in all shot up like this, all discombobulated and by the time they leave they’re whistlin’ a tune. Chicago Hope “The Day of the Rope”
Why palliative care now? • Growing number of persons with chronic illness • Recognition of inadequacies in the care of the dying • Social factors - medicalization and institutionalization of experience of dying
Growth in chronic illness • Demography: life expectancy increased from 50 to 80 years during 20th century, boomers • Medical Treatment: sequelae of previously fatal illness, life-extending therapies 17.1 million elderly had some form of disability in 1990 (7.3 million require assistance)
Social factors • Institutional death • 50% of deaths in 1949 • 74% of deaths in 1992 • Family and social networks • Physician-assisted suicide
Sudden death, unexpected cause • < 10%, MI, accident, etc. Health Status Death Time
Inadequacies in the care of the dying (SUPPORT) • Severe symptoms prior to death: • 20-40% confused • 30-90% short of breath • 40-50% in severe pain • Patients who did not die during the study also experienced severe symptoms
Inadequacies in the care of the dying (SUPPORT) • 55% of persons who preferred to die at home died in the hospital • Advance directives did not affect treatment or resource use • Giving doctors more prognostic information did not affect their treatment of dying patients
The current paradigm Curative Therapy Palliative Therapy
Multiple goals of care In reality: • Multiple goals apply simultaneously • Goals may be contradictory • For a particular patient, some goals take precedence over others
A New Paradigm Curative AND Palliative
Definition: 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 quality of life for patients and their families.” (WHO)
Dimensions of palliative care • Decision making / autonomy • advanced directives, preferences, site of care and death • Symptom management • Overall quality of life • physical, psychological, and spiritual wellbeing • Family support in care / grieving • Medical care preceding death • survival duration, appropriateness, and resource use
Case: History • Elderly male in rehab facility • Recent lacunar stroke with dense L hemiparesis • New onset confusion, somnolence
PMH: HTN, benign positional vertigo, depression and mild dementia PSH: none Meds: Clopidogrel, Aspirin, Meclizine, Surfak NKDA Pers: No tobacco or alcohol use Case: History
Case: Physical Exam • Vital signs: BP 148/88 R12 P75 T97.6 oral • Mental status: somnolent but arousable, oriented to person, location • Neurologic: L facial droop, LUE held in clasp knife position with decreased spontaneous motion, moving legs vigorously, reflexes 2+ R, 3+ L with + Babinski reflex on the left.
Questions • Should this patient be receiving palliative care? Why or why not? • How should that consideration affect the treatment he is receiving?
Case: Further History • MRI confirms new stroke in the occipital region involving part of the cerebellum • Routine labs, CXR, and EKG are nl • Day 5 the patient remains confused, NPO • Neurologist indicates “We need to put in a feeding tube if he doesn’t get better.”
Step 1: Preparing for the discussion • Who should be involved? “We need to make some decisions about the care of your father and grandfather. Is everyone here who could help us think through what we should do?” “Let’s meet tomorrow morning at 7AM in the family conference room.”
Step 2: Determine what the patient / family know • What is the family’s understanding of the patient’s condition? “Tell me how he has been doing recently. Tell me how that compares to a year ago, 6 months ago?”
Mr. M’s recent history • Family describes decline in his interaction, recognition, and ability to eat and drink. “A year ago he used to drive his car over to Ryan’s steakhouse ‘most every day. Since then, he’s just been going downhill. He’s not the same dad I’ve always known and loved.”
Step 2: Clarify what the patient / family know • Clarify the family’s understanding of the disease and its prognosis. “Unfortunately, Mr. M. has had a disabling stroke. I don’t expect his body or his mind to recover significantly at this point.”
Step 3: Explore what they are hoping for • Ascertain the family’s sense of what would best honor his goals and values “We want to care for him in a way that makes us confident that after he’s gone we can say he was treated with dignity and respect.”
Step 3: Explore what the patient / family are hoping for • Elicit the family’s understanding of the patient’s wishes “How do you think he would feel about being fed through a tube? Have you or anyone else in your family ever had any experience with this kind of care?”
Step 4: Suggest realistic goals • Provide guidance on the basis of medical data and clinical expertise “What is the likely outcome if we do / do not place a feeding tube?”
Step 5: Make a plan • Family believes the patient wishes to avoid feeding tubes or gastric tubes • Family believes that patient would not want to experience treatment that creates further dependence. Patient has made previous statements that generally support limiting care under such circumstances.
Summary of steps • Identify and convene key participants • Determine and clarify what they know and what they want to know about the patient’s condition • Explore expectations, hopes, and fears • Establish goals of care • Use principles of negotiation to focus on agreement • Make a specific plan
Conclusion “ On special occaisons only, in sickness and in sorrow, or in the presence of some great catastrophe, do disturbing thoughts arise: ‘Whence are we, and why are we? Of what scene the actors or spectators?’ and man’s heart grows cold at the thought that he must die, and that upon him too, the worms shall feed sweetly.” Sir William Osler Science and Immortality (1904)
References for further exploration Buckman R. How to Break Bad News:A Guide for Health Care Professionals. Baltimore, M.D. The Johns Hopkins Press’ 1992. EPEC curriculum www.jama-assn.org/ethic/epec SUPPORT comprehensive bibliography and findings supplement J American Geriatrics Society May 2000 Annals of Internal Medicine ACP-ASIM Consensus Panel on End of Life Care reports including “Palliative Care in Patients Lacking Decision Making Capacity” 18 May 1999 Oxford Textbook of Palliative Medicine. Eds. Doyle, Hanks, and McDonald. Oxford University Press 1999 Approaching Death: Improving Care at the End of Life. Washington, DC. Institute of Medicine / National Academy Press. 1997.
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