Palliative care model lost in today's HIV/AIDS care
Comfort care and pain control still necessary
HIV treatment and care have been so successful in resource wealthy nations that one unintended byproduct has been that clinicians are less focused on patients' comfort and quality of life than they were when so many of their patients were dying.
A workgroup on palliative and end-of-life care in HIV/AIDS tackled the job of creating new recommendations for the field as part of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care program, and the results of that effort continue to educate HIV providers and others.
"With improvements in HIV care, there is a whole different feeling in the field of HIV/AIDS about end-of-life care," says Anthony Back, MD, a professor in the department of medicine for the University of Washington and Fred Hutchinson Cancer Research Center in Seattle, WA. Back was a co-chair of the HIV/AIDS workgroup.
"The field is in a much more difficult place for end-of-life care now," Back notes. "In the early days, HIV clinicians thought of themselves as being in end-of-life care; now there's a whole generation of clinicians who have never seen an HIV patient die."
The new focus is on controlling a chronic illness and dealing with the complications of antiretroviral therapy, Back says.
"That's where a lot of the physician interest in the field has gone, and the people drawn into the field are interested in that and less interested in palliative care," Back says.
The HIV/AIDS workgroup met in 2002 and 2003 and wrote recommendations to the field, addressing the unmet needs for palliative care.
"We were able to create a new kind of cultural awareness of what palliative care should be now," Back notes. "It was an important impetus in the field to change how people were thinking about care."
The workgroup's efforts also resulted in a book, titled, Clinical Guide on Supportive and Palliative Care for People with HIV/AIDS. The book is available for free through the HRSA Information Center at (888) 225-4772 or on the Web site: www.promotingexcellence.org.
As more HIV patients begin to falter while receiving the potent drug therapies, there's a growing recognition that not all patients will respond to HAART, and this reality opens the door to palliative care, Back says.
"The other hook for palliative care is that patients with HIV are very oriented toward comfort, and those are the kinds of issues they drive to some degree," he says. "It's related to the side effects of antiretroviral therapy."
The HIV field has paid a great deal of attention to symptom control but, in recent years, it's less attuned to the issue of patients having a lifespan that could be limited, Back notes.
"There is tremendous uncertainty and developments nobody predicted," Back says.
HIV clinicians who would like to improve their care by adding a palliative touch could follow these three strategies, Back suggests:
1. Provide systematic symptom management.
The third chapter in the book, Clinical Guide on Supportive and Palliative Care for People with HIV/AIDS, is titled, "Assessment of Physical Symptoms," and it asserts that the key to symptom assessment is a comprehensive approach that includes having the provider develop an understanding of the patient's current and past illness, as well as to elicit the details of the distress each symptom causes the patient.1
"This picks up many more issues that otherwise seem to get missed, Back says. "The things I'm concerned about are really making sure people have adequate treatment for pain, and treatment for pain that takes into account how they want to manage their pain medications."
For example, there is a trade-off between sedation and other symptoms, and it's complex because patients don't want to be totally unaware of their surroundings, Back says.
"So you need to use adjunct pain medications to make sure they get an adequate amount of pain control," he says. "This isn't an issue with the early phase of HIV disease, but for people who have a dropping CD4 cell count and are at the point where they're switching regimens and are on their fourth or fifth antiretroviral therapy, pain is a big issue."
The fourth chapter of the Clinical Guide focuses on pain, citing studies showing that pain among HIV patients is highly prevalent, diverse, associated with significant psychological and functional morbidity, and undertreated.1
Neuropathic pain, particularly from the HIV therapies, including didanosine, stavudine, and zalcitabine, is a major problem for HIV patients, Back notes.
This type of pain occurs in as many as 40 percent of AIDS patients, and its causes might also be from toxins, such as alcohol; comorbid conditions, including diabetic neuropathy, immune-mediated inflammatory demyelination, nutritional deficiencies, and viral and non-viral infectious processes, such as mononeuritis multiplex.1
2. Improve communication with patients.
"Patients need communication from providers that gives them an open space to talk about their concerns related to uncertainty or prognosis or what could happen down the road," Back says.
"I don't necessarily think physicians have to do the whole thing, but it's very important for them to initiate it and be a part of it," Back says. "It's an important message that this is something that shapes the course of care, and that's why they need to be involved."
If physicians do not have conversations with patients who still are healthy about future problems that may occur with HIV treatment, then the conversations will occur too late and be pushed off onto the social workers, Back says.
3. Help HIV patients plan for the time they become very ill.
Clinicians should not reserve discussions about the possibility of treatment failure until the end, Back says.
"People get uncomfortable with it and put it off, and that can prevent people from really planning," he says.
The end result of not planning is having an AIDS patient lying in a hospital bed with life support and little say over what happens in their last days, Back says.
The palliative approach to this scenario is noted in the 22nd chapter of Clinical Guide, titled, "Facilitating the Transition to Home-based and Hospice Care."
Clinicians are advised to have advanced end-of-life planning discussions, including educating patients and families about palliative care and hospice services. The chapter also suggests that clinicians ask some specific open-ended questions, such as these:
- What has your medical team told you about your condition? What does this information mean to you?1
- Tell me about your good days . . . What are you able to do on those days?1
- What kind of assistance do you need on days when you do not feel well?1
- What are your most meaningful goals at this time in your life? Is there anything we can do to help you achieve them?1
- In the event of your death, is there anyone or anything that you are worried about?1
Reference
- O'Neill JF, Selwyn PA, Schietinger H (eds). A Clinical Guide to Supportive and Palliative Care for HIV/AIDS. 2003; HRSA/DHHS.
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