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

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 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

Top 5 Causes of Death 1900

Rank Cause of Death Percentage

1 Influenza,Pneumonia

11.8

2 Tuberculosis 11.3

3 Gastritis,Enteritis

8.3

4 Heart Disease 8.0

5 Stroke 6.2

Top 5 Causes of Death 1994

Rank Cause of Death Percentage

1 Heart Disease 32.1

2 Cancer 23.5

3 Stroke 6.8

4 COPD 4.5

5 Accidents 3.9

Where Do We Die?

60%20%

20%

OtherNursing HomeHospital

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…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 don’t suffer. Only people suffer.

From the Patient’s 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 patient’s 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 THE GREATEST OPPORTUNITY: Understanding that we are all stakeholders and that we want to deliver good we are all stakeholders and that we want to deliver good

carecare

The Future:Change Is Inevitable, but Will

It Be Purposeful

Purposeful change requires tension

Best PracticesIn

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 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

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 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

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

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

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

EthicsControversies

• Physician assisted suicide (PAS)

• Voluntary euthanasia (VE)

• Terminal sedation (TS)

• Futility

• Who pays for what? (Issues of justice)

• Cultural factors

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

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

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

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

System IssuesControversies

• ? 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 <90>160, B/PD <40>120

• Temp> 102

• Pulse <60>110

• O2 Sat <90We’re happy measuring what is

measurable…