A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...

A Guide to Primary Care of People with HIV/AIDS
Chapter 15: Palliative and End-of-Life Care
Chapter 15:
Palliative and End-of-Life Care
Carla S. Alexander, MD
Kennita R. Carter, MD
INCORPORATING PALLIATIVE CARE INTO HIV CARE
CARE AT THE END OF LIFE
KEY POINTS
SUGGESTED RESOURCES
REFERENCES
INCORPORATING PALLIATIVE
CARE INTO HIV CARE
What is palliative care?
Palliative medicine is the discipline devoted to the
relief of suffering and the promotion of quality of
life. Palliative, meaning non curative, has often been
misunderstood to be limited to end-of-life or hospice
care; it is rather a more general term for the type of
supportive care needed throughout the trajectory of any
chronic illness or major injury.
In traditional medical care, efforts are primarily curative
or restorative until a poorly defined point when provider
and patient acknowledge disease progression and
decide to shift toward less aggressive management (See
Figure 15-1a). In chronic progressive illnesses supportive
care might be provided simultaneously assuring
maximum quality of life throughout the course of illness
for patients, family and caregivers (Figure 15-1b).
Why is palliative care still needed for people
with HIV/AIDS, now that antiretroviral
therapy (ART) is so successful?
AIDS, originally considered a terminal illness, has
transitioned to a chronic disease for those who are able
to use ART. However, there is still a steady death rate in
the United States of 15,000 to 16,000 per year. While
the numbers are low compared with the epidemic in
the early years, persons living with HIV disease continue
to experience pain, body habitus changes, and other
physical and emotional symptoms that negatively impact
their daily quality of life. Preventing and controlling these
problems are as relevant as reducing viral load. Setting
realistic goals and improving self-esteem allow the person
with HIV disease to remain in control of his/her life and
to be a productive member of society.
Figure 15-1a: Traditional Model of Care (first curative, then palliative)
15
Curative Care
(= disease-specific, restorative)
Palliative Care
(= supportive,
symptom-oriented)
Diagnosis
Dying
Death
Person with Illness
Disease Progression
Source: World Health Organization. Cancer Pain Relief and Palliative Care, Report of a WHO Expert Committee.
Publication #1100804. Geneva: World Health Organization, 1990.
U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau
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