Desired Setting of Death
When people are asked "where they would like to die, at home or in an acute or long-term care facility," most (˜ 90%) project that they would like to die at home.
Ref: Knowledge and Attitudes Related to Hospice Care. Survey
conducted for the National Hospice Organization. Princeton, NJ: The Gallup Organization,
September 1996.
However, if questioned in more detail, many patients prefer to receive the majority of
the care at home, for as long as possible, as long as:
- They have access to the treatments and care they need and are not suffering unnecessarily
- They continue to have meaningful experiences
- They are not a burden on their families and informal caregivers
However, when:
- They need a therapy that is difficult to deliver at home or caregivers do not know how to do it
- They no longer have the capacity to have meaningful experiences, eg, when dying
- The burden of care is too great for their families
many would prefer to transfer to a health care facility for their care.
Most people do not want to put their families at personal risk of job loss,
or physical or financial burden. While most people wish to die at
home, this setting of death in reality only occurs about 20% of the time.
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CAPCManual Attribution:
von Gunten CF,
Ferris FD,
Portenoy RK,
Glajchen M, eds.
CAPCManual: How to Establish A Palliative Care Program.
New York, NY: Center to Advance Palliative Care, 2001.
©
Center for Palliative Studies, San Diego Hospice & Palliative Care, San Diego, CA
and
The Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, NY, 2001
Permission to reproduce for non-commercial educational purposes with display of
attribution and
copyright is granted.
Last updated: February 20, 2002
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Rationale
Select section:
Changing Illness Experience
Changing Expectations and Needs
Progressive Healthcare Response
Responding to the Opportunity
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Changing Illness Experience
Illness in the Past
Progress Fighting Disaese
Illness Today
Prolonged Illness Experience
Chronic Disease Process
Determining Prognosis
Cancer
Manifestations
Predicament
Prolonged End-of-life Experience
Sudden Unexpected Death
Predictable Decline
Slow Decline, Multiple Acute Crises
Death in the US
Leading Causes of Death
Setting of Death
Desired
Reality
Multiple Issues Cause Suffering
The Square of Care
Morbidity
Pain
Need for Assistance
Social, Financial Impact
Implications for Care
Variable Need for Care
Opportunities
For Patients
For Families
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Changing Expectations and Needs
Increased Consumer Autonomy
Picker Institute 8 Dimensions of Care
Goals, Not Problems, Drive Care
Shift to Goal-oriented Care
Expect Competence, Expertise
Expect Comprehensive Assessment
Expect Effective Communication
Expect Participation in Decision-making
Expect Timely, Continous, Coordinated Care Delivery
Expect Assistance with Caregiving
Caregiver Training, Support
Caregiver Financial Support
Alternate Settings of Care
Respite Relief
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Progressive Healthcare Response
Focus on Disease-modifying Therapy
Focus on Care of the Dying
Early Hospice
Modern Hospice Movement
Dame Cicely Saunders
Origins of "Palliative Care”
Evolution of Hospice, Palliative Care
In United Kingdom
In Canada
In United States
Convergent Evolution
Hospice, Palliative Care in US Today
Hospice Growth
Continued Unmet Opportunity
A Public Health Issue
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Responding to the Opportunity
Paradigm Shift in Thinking
Provide Concurrent Care
Consider Application to Those at Risk
Expand Services, Settings of Care
1º, 2º, 3º Model of Delivery
Expand Access to Expertise
Create Specialized Environments
Many Names, Same Focus of Care
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