Variable Need for Care
The model illness trajectories:
- sudden unexpected death
- predictable decline
- slow decline with multiple acute crises
describe the typical patterns of illness experienced by patients and families.
Although there are many unique qualities to the individual experience
of illness, some generalizations can also be made.
The importance and severity of each issue, and the corresponding intensity
and severity of expectations and need for healthcare services fluctuate
over time. This fluctuation demands considerable flexibility from the
healthcare system. At times the patient will require intense evaluation
and management. At other times there may be little or no need for any
interaction with healthcare providers as is illustrated in the figure
that follows.
- At one moment, the patient may be quite ill and distressed, and have many expectations and
needs requiring rapid attention in an acute care facility, or at home.
On other occasions the patient will not have any signs of active disease and no associated
distress.
- As the illness progresses, most patients require more visits to their physician's office
or ambulatory clinic and eventually home visits by nurses to assist with their care.
- If families are providing a lot of care, they may need intermittent respite relief.
- As the illness advances, some patients will require more long-term and skilled
nursing support.
- In the last hours of life, the need for continuous assessment and care can approach or
exceed the intensity of an intensive care setting as indicated by the need for continuous presence of skilled
caregivers and frequency of assessment.
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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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