A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...
A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...
A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...
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A <strong>Guide</strong> <strong>to</strong> <strong>Primary</strong> <strong>Care</strong> <strong>of</strong> <strong>People</strong> <strong>with</strong> <strong>HIV</strong>/<strong>AIDS</strong><br />
Chapter 15: Palliative and End-<strong>of</strong>-Life <strong>Care</strong><br />
a message <strong>of</strong> abandonment is the real difficulty.<br />
Being adept at managing symp<strong>to</strong>ms such as pain<br />
can give the provider confidence when initiating this<br />
conversation. Reassuring the patient and family that<br />
comfort measures are always possible and isolating one<br />
problem at a time may minimize their sense <strong>of</strong> being<br />
overwhelmed. Simply asking the patient what goals are<br />
important helps refocus on concrete issues that can be<br />
successfully mastered.<br />
Another significant challenge for the provider may be<br />
foregoing invasive diagnostic studies when the patient<br />
is moving closer <strong>to</strong> death. The astute practitioner<br />
needs <strong>to</strong> rely on physical assessment and knowledge <strong>of</strong><br />
probabilities <strong>to</strong> surmise the cause <strong>of</strong> a symp<strong>to</strong>m. Using<br />
one medication for multiple outcomes minimizes pill<br />
burden. For example, steroids may be employed for<br />
relief from dyspnea; this same drug might also improve<br />
appetite and sense <strong>of</strong> well-being, suppress fever, and<br />
relieve achiness related <strong>to</strong> prolonged bedrest.<br />
S<br />
P<br />
I<br />
K<br />
E<br />
S<br />
Table 15-3. Mnemonic for<br />
Breaking Bad News<br />
Setting and listening Skills<br />
Patient and family Perception <strong>of</strong> condition<br />
Invitation <strong>to</strong> patient <strong>to</strong> determine how much Information<br />
he/she wants <strong>to</strong> know<br />
Knowledge; reviewing the facts<br />
Explore Emotions and Empathize<br />
Summary & Strategy<br />
Source: Adapted from Baile W, Buckman R. Practical <strong>Guide</strong> <strong>to</strong><br />
Communication Skills in Clinical Practice. Niagara Falls, NY: Medical<br />
Audio Visual Communications, Inc, 1998.<br />
What roles do culture and spirituality play in<br />
end-<strong>of</strong>-life care?<br />
Culture and spirituality are significant fac<strong>to</strong>rs affecting<br />
how end-<strong>of</strong>-life care should be delivered <strong>to</strong> each<br />
individual patient and family. Lack <strong>of</strong> clarification <strong>of</strong><br />
cross-cultural differences can be a barrier <strong>to</strong> patients’<br />
receiving appropriate end-<strong>of</strong>-life care. Spirituality,<br />
connection <strong>with</strong> a higher power, or a sense <strong>of</strong> meaning<br />
can provide tremendous comfort and support. Not<br />
recognizing these issues or the impact <strong>of</strong> <strong>AIDS</strong>-related<br />
stigma might even add <strong>to</strong> suffering. It is useful <strong>to</strong> ask<br />
the patient if he/she has a faith and how important it<br />
is <strong>to</strong> him/her. If the provider does not feel comfortable<br />
addressing these issues, every attempt should be made<br />
<strong>to</strong> have someone on staff or for easy referral <strong>to</strong> address<br />
this need. It has been clearly documented in medical<br />
literature that spiritual concerns might be involved in<br />
exacerbation <strong>of</strong> all types <strong>of</strong> illness.<br />
How do you provide reality-based hope for the<br />
person <strong>with</strong> advanced <strong>AIDS</strong>?<br />
Hope is an intrinsic value that allows the human<br />
spirit <strong>to</strong> persevere even against great difficulty. When<br />
a person is nearing the end <strong>of</strong> life, it may not be<br />
reasonable <strong>to</strong> want <strong>to</strong> live until a certain birthday that<br />
will not occur for several months. In this case, the<br />
health care staff needs <strong>to</strong> help <strong>with</strong> a redefinition <strong>of</strong><br />
hope that is more achievable. Some families in hospice<br />
programs have celebrated religious holidays a month<br />
ahead <strong>of</strong> time, held ceremonies before they were<br />
originally scheduled, and made videotapes <strong>of</strong> the dying<br />
person <strong>to</strong> be played during an up-coming event.<br />
How do you conduct a family meeting?<br />
Prior <strong>to</strong> a family meeting, the provider must prepare a<br />
mental agenda <strong>to</strong> identify internal and external barriers<br />
<strong>to</strong> achieving a clear and therapeutic picture <strong>of</strong> the goals<br />
important <strong>to</strong> all involved (see Table 15-4).<br />
What does the patient need <strong>to</strong> accomplish<br />
before death?<br />
There are multiple physical, psychosocial, and spiritual<br />
issues that deserve attention in order for the patient <strong>to</strong><br />
die peacefully and <strong>to</strong> leave satisfac<strong>to</strong>ry memories for<br />
family and friends. The patient and family need <strong>to</strong>:<br />
• Appoint a health power <strong>of</strong> at<strong>to</strong>rney and talk <strong>with</strong> that<br />
person about support preferences<br />
• Make a will <strong>to</strong> avoid conflict following death, including<br />
guardianship issues<br />
• Attempt <strong>to</strong> resolve previous misunderstandings or<br />
estrangements<br />
• Encourage family and friends <strong>to</strong> openly discuss the<br />
patient’s deterioration <strong>to</strong> avoid a “conspiracy <strong>of</strong> silence”<br />
• Express love and appreciation <strong>to</strong> family, friends, and staff<br />
• Engage family, friends, and staff in a life review (eg,<br />
telling s<strong>to</strong>ries about accomplishments, regrets, funny<br />
things that have happened along the way)<br />
• Create a memory book or video tape, or write letters<br />
for children left behind<br />
• Discuss plans or preferences regarding funeral or<br />
memorial service<br />
• Say goodbye <strong>to</strong> family, friends, and caregivers (the<br />
patient needs reassurance that those left behind will<br />
be cared for and that he or she will be remembered)<br />
15<br />
U.S. Department <strong>of</strong> Health and Human Services, Health Resources and Services Administration, <strong>HIV</strong>/<strong>AIDS</strong> Bureau<br />
127