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CARING FOR PATIENTS AT THE END-OF-LIFE- Where Are We Now?

CARING FOR PATIENTS AT THE END-OF-LIFE- Where Are We Now?. James Hallenbeck, MD Medical Director, VA Hospice Care Center Stanford Hospice. End-of-life Care- A Period of Rapid Change. New hospice unit Regulations, policies Pain as the fifth vital sign Palliative care index

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CARING FOR PATIENTS AT THE END-OF-LIFE- Where Are We Now?

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  1. CARING FOR PATIENTS AT THE END-OF-LIFE-Where Are We Now? James Hallenbeck, MD Medical Director, VA Hospice Care Center Stanford Hospice

  2. End-of-life Care-A Period of Rapid Change • New hospice unit • Regulations, policies • Pain as the fifth vital sign • Palliative care index • New JCAHO standards on pain and symptom management • Increased lay and professional interest • Movies: What Dreams May Come, Meet Joe black • Increasing number of conferences on EOL care Look around!

  3. Objectives • Understand how dying and EOL care has changed • Identify barriers and opportunities for improving care in the present • Consider working toward best practices in the future

  4. A Century of Dramatic Changes in Dying • 1945: Penicillin • 1953: Knowsy the dog resuscitated • Early 1960’s: CPR and ICUs flourish • 1967: St. Christopher’s hospice • 1969: Kubler-Ross- On Death and Dying • 1983: Medicare hospice benefit • 1993: Oxford Textbook of Palliative Med. • 1995: SUPPORT study • 1997: Supreme Court hears cases on assisted suicide

  5. Top 5 Causes of Death 1900

  6. Top 5 Causes of Death 1994

  7. Where Do We Die?

  8. Care for the Dying Is Big Business • 2.3 million Americans die annually • 1000 veterans a day • Expense of care for the dying: 45 billion/year for last six months of life • 7.5% of healthcare expenditures for 0.9% of population • Dying is largely publicly funded • However 30% of families impoverished by private expenditures for dying

  9. Barriers to Good EOL Care • Denial (present but overrated) • Healthcare structure and financing • Educational deficits

  10. What Is Not on Your List? • The technical ability to make patients comfortable at the end-of-life • How the dying person and loved-ones have prepared (or not prepared) for dying

  11. Healthcare for Dying Patients A Mechanistic Approach • Perform diagnostics: Internist • Get a tune-up: Internist • Change defective part: Surgeon • Car beyond repair: Hospice Patients as Cars Car Not Running Well? Problem is- the driver never leaves the car…

  12. What About the Driver?What About ‘Symptom Management’? Fill in the blank: “I think that is just a symptom. The real problem is ______” Our language says that symptoms matter only as clues to underlying diseases. However, diseases don’t suffer. Only people suffer.

  13. From the Patient’s Perspective- a Symptom Is What Is Bothersome

  14. Disease As a Clue for the Symptom Disease process Symptom Questions to ask… How does the disease give rise to the symptom through local, central effects? What are emotional, cognitive and spiritual components of the patient’s illness?

  15. Opportunities • Data now exists demonstrating our deficiencies in care • An explosion of research into both treatment and systems of care • A dramatic increase in educational resources • Textbooks, curricula, websites, courses THE GREATEST OPPORTUNITY: Understanding that we are all stakeholders and that we want to deliver good care

  16. The Future:Change Is Inevitable, but Will It Be Purposeful Purposeful change requires tension

  17. In Search of Best PracticesInCare Of The Dying Tension Between the Ideal and Current Practice. Controversies Within the Field

  18. Domains of EOL Care Pain Management Non-pain Symptom Management Communication Ethics Psychosocial, Spiritual Care System issues

  19. Pain ManagementStandards of Care • Patient centered • Standardized assessment tools • Pain as the fifth vital sign • Monitoring is incorporated into quality management • Specific prescribing guidelines • Ex. For chronic pain needing opioids, rely on long-acting agents with short-acting breakthrough doses

  20. Pain Management Controversies • Generalist vs. Specialist • Palliative care specialist vs. Pain management specialist • How should pain be treated in different cases: • Cancer related • Terminally ill • Non-malignant chronic pain • In patients with substance abuse

  21. Non-pain Symptom Management What symptoms are we talking about? • Constipation • Dyspnea • Nausea and vomiting • Dry mouth • Plus approximately 50 more...

  22. Non-pain Symptom ManagementStandards of Care • Overall- emphasis on tailoring drug therapy to specific cause(s) of symptoms • Constipation • Start treatment when starting opioids • More patient/nurse autonomy in treatment • Dyspnea • Central role of opioids, benzodiazepines • Nausea and vomiting • Dopamine antagonists for opioid related nausea

  23. Non-pain Symptom ManagementControversies • Role of antibiotics in certain infections • Role of artificial hydration/nutrition • Use of newer, often more expensive palliative medicines • Ex. 5HT3 antagonists for nausea • Overlap/differences between traditional and palliative care for certain symptoms

  24. CommunicationStandards of Care • Active listening • Assessment of patient preferences • Current as well as advance directives • Sharing of bad news • How to “pronounce” a patient • Patient/family education • Prognosis, care options, goals of therapy, normal changes of dying

  25. CommunicationControversies • Who should communicate what? • Time and money involved in good communication • Cultural factors • Attending physician role in modeling/teaching communication skills • Much EOL communication part of resident sub-culture

  26. EthicsControversies • Physician assisted suicide (PAS) • Voluntary euthanasia (VE) • Terminal sedation (TS) • Futility • Who pays for what? (Issues of justice) • Cultural factors

  27. EthicsStandards of Care • Discussion and documentation of current and advance directives • Non-abandonment • Respect for patient, family, healthcare worker values • Importance of cultural competency • Availability of ethics consultation

  28. Psychosocial, Spiritual CareStandards of Care • Recognition/treatment of depression • Recognition of the family as the unit of care • Appreciation for economics of EOL care • Importance of addressing patient/family spiritual needs • Bereavement support

  29. Psychosocial, Spiritual CareControversies • Treatment of terminal delirium • Role of healthcare workers in this area, esp. addressing spiritual suffering • Are we at risk of forcing our notion of a “good death” onto others? • Reimbursement for this care

  30. System IssuesStandards of Care • Universal access to appropriate EOL care • Coordination of care across venues • Treatment of patients in the venue of care desired to the extent possible • Interdisciplinary approach to care • Incorporation of monitors into quality management structure and accreditation

  31. System IssuesControversies • ? Right to EOL care • Hospice vs. Palliative care • Role of managed care • Proper reimbursement structure

  32. Summary • Standards of care are beginning to evolve • Large gaps between “best practices” and current level of practice • Controversies exist as to what constitute best practices

  33. Bringing It Back Home • Difficulty paying attention to how patients feel as compared to measuring the numbers • O2 Sat. vs. Short of Breath • Call H.O for: • B/PS <90>160, B/PD <40>120 • Temp> 102 • Pulse <60>110 • O2 Sat <90 We’re happy measuring what is measurable…

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