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
• Reduction of diagnostic studies and number of
medications as prognosis shortens
• Regular review of health power of attorney and
support of patient wishes
• Discussions of prognosis with patient and family soon
enough to allow closure near the end of life
• Referral to hospice/palliative home care when office
visits become burdensome for patient
• Maintenance of contact with family during
bereavement period
• Acknowledgement of staff members’ feelings of loss
when patients die
What are some common symptoms experienced
by persons with advanced HIV disease?
In surveys, patients receiving ART report experiencing
the same symptoms as patients reported in the earlier
years of the epidemic, but the frequencies of symptoms
have changed (Mathews et al, 2000; Vogl et al, 1998).
Fatigue, sadness, diarrhea, and fever continue to plague
patients even when disease is controlled by ART. Pain
is still experienced by up to 75% of patients and may
be present in multiple areas at once, including the
extremities and oral, esophageal, abdominal, or rectal
sites. Adequate treatment for one type of pain may
only expose another. This often raises the specter of
“drug-seeking behavior” when in fact the patient is
simply able to be aware of the secondary pain after the
greater pain is relieved (see Chapter 13, Management of
Substance Abuse). Peripheral neuropathy can be caused
by ART, HIV disease itself, or unrelated disease such as
diabetes. This pain does not seem to be related to the
degree of control of viral burden, and cause must be
sought through historytaking as many patients seem
to overlook early manifestations such as numbness.
Refer to Chapter 8, Symptom Management, as well as
resources under Suggested Resources for management
of pain and symptoms.
How important is pain control in advanced
HIV disease?
Pain, as with any symptom, should be described,
quantitated, treated, and promptly reevaluated with
appropriate dose modification of therapy (see Table 15-1).
In the Guidelines for Management of Cancer Pain, pain
experienced by those with HIV disease is compared
with the chronic pain experienced by persons with
cancer, which often requires management with opioids
(AHCPR, 1994). Unlike blood pressure, which might be
regulated over weeks, pain should be controlled within
the shortest time possible to prevent the development
of long-term symptoms such as depression and
anhedonia.
A
B
C
D
E
Table 15-1. Mnemonic for
Assessment of Pain
Ask about pain regularly; Assess systematically
Believe the patient and family
Choose treatment options appropriate to patient
and setting
Deliver medications on an “around-the-clock”
basis with adequate “breakthrough” doses
Evaluate results frequently; Empower patients
and families to control pain
The following guidelines are helpful in prescribing pain
medication (American Pain Society, 1999):
1. Use a grading system (such as the scale of 0–10) to
document pain severity and compare the number
obtained to a second number following treatment to
evaluate response.
2. Start with a dose that will acutely relieve the pain.
This may be given intravenously or subcutaneously
to achieve a rapid response. Care should be taken
to observe for any signs of respiratory depression in
opiate-naive patients who receive parenteral opioids.
3. Next, begin a low dose every 3–4 hours (based on the
half-life of the drug) “around-the-clock,” not on an
as-needed, basis. The initial dose should be chosen
based on the age, size, and renal/hepatic function of
the patient. (See Suggested Resources for additional
guidance on pain management.)
4. A “ breakthrough dose” should also be prescribed
every 1-2 hours prn equal to a sixth of the total daily
opioid dose. This allows for development of a steady
state drug level and avoids alternation of great pain
intensity with somnolence. This is the same approach
used to control hyperglycemia with a sliding scale of
regular insulin based on glucometer readings; doses
are based on pain scores.
5. When pain is fairly well controlled, it is appropriate to
change the patient to a long-acting pain medication
for ease of administration. The dose is calculated
by adding together the total dose taken in 24 hours
and dividing by the half-life of the new preparation.
For example, for a medication meant to be given
every 12 hours: divide the total dose by 2, and this
number will be the dose every 12 hours. Don’t forget
the breakthrough dose. This is a short-acting opioid,
preferably of the same type as the long-acting one
for use at times when the pain is not adequately
controlled.
6. Other forms of administration include liquid
formulations for persons with difficulty swallowing,
rectal suppositories, “sprinkles” that can be mixed
with soft food, and patches that allow absorption of
the medication through the skin.
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U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau
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