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 –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!

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

A Century of Dramatic Changes in Dying 1945: Penicillin 1953: Knowsy the dog resuscitated Early 1960s: CPR and ICUs flourish 1967: St. Christophers 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

Top 5 Causes of Death 1900

Top 5 Causes of Death 1994

Where Do We Die?

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

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

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

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

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 dont suffer. Only people suffer.

From the Patients Perspective- a Symptom Is What Is Bothersome

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 patients illness?

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

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

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

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

Pain Management Standards 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

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

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

Non-pain Symptom Management Standards 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

Non-pain Symptom Management Controversies Role of antibiotics in certain infections Role of artificial hydration/nutrition Use of newer, often more expensive palliative medicines –Ex. 5HT 3 antagonists for nausea Overlap/differences between traditional and palliative care for certain symptoms

Communication Standards 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

Communication Controversies 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

Ethics Controversies Physician assisted suicide (PAS) Voluntary euthanasia (VE) Terminal sedation (TS) Futility Who pays for what? (Issues of justice) Cultural factors

Ethics Standards 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

Psychosocial, Spiritual Care Standards 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

Psychosocial, Spiritual Care Controversies 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

System Issues Standards 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

System Issues Controversies ? Right to EOL care Hospice vs. Palliative care Role of managed care Proper reimbursement structure

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

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 160, B/PD 120 Temp> 102 Pulse 110 O2 Sat <90 Were happy measuring what is measurable…