Pull Out and Save
How You Can Help Your Patients Reduce the Level of Stress in Their Lives
Practical Recommendations for Healthcare Professionals Who Provide Continuing Care to Patients With HIV Disease
Stress stalks all people living with HIV. It can be acute in onset, triggered by the loss of a loved one or by a host of other, lesser losses: a lease, a pet, a promotion, a client. Stress may be an inevitable result of living with HIV disease, but that does not mean it is untreatable. If stress merely produced headaches, gastrointestinal upset, sleep disturbances, malaise, and depression -- all of which are, in fact, classic symptoms of severe stress -- we would want to treat it, simply to alleviate those symptoms and enhance the quality of our patients' lives. But we now know that sustained stress also erodes immune function and hastens the onset of frank AIDS.
This knowledge gives us an added incentive to treat stress as aggressively as we treat viremia in seropositive individuals. Most large cities now have hotlines, health services, and support networks to help HIV-positive people manage the most stressful aspects of living with their disease. (For a state-by-state guide to such programs and services, see "Reach Out and Touch Someone," the Pull Out and Save feature in the August 1997 issue of AIDS Care.) Several recently developed programs now offer participants a means of reducing the psychosocial stressors that adversely affect the immune system, and early indications are that these programs can have a positive impact on psychological status, health behaviors, and immune function. (For further information about these programs, see box.)
These programs and services can be extremely helpful to individuals who are trying to cope with the chronic stress of living with HIV, and all patients -- those recently diagnosed, those in their tenth year of antiretroviral therapy, and all those in between -- should be strongly encouraged to contact trained counselors in their area. That done, healthcare professionals should take an active role in helping their seropositive patients reduce the number and intensity of stressors in their lives. Those sources of stress are listed below, along with specific suggestions about ways you can help your patients ameliorate the deleterious effects of those stressors.
Psychosocial Sources of Stress -- and What You Can Do to Help Your Patients Reduce Their Deleterious Effects
1. Fatalism. Death, like taxes, is an inevitable part of living. For people living with HIV, morbid fixation on death and dying hastens the onset of frank AIDS. Fatalistic patients should be urged to talk to long-term survivors and to those who have learned how to contain their anxieties and focus on achievable, rewarding, short-term goals.
2. Chronic impatience. Haste makes waste -- and in HIV-positive individuals with so-called Type A personalities, haste can waste CD4 cells. Type A types should be encouraged to develop and maintain regular routines of "deep relaxation." This need not involve a structured program of meditation; a warm bath, a ten-minute nap, or simply sitting in a quiet, darkened room for a few minutes can suffice.
3. Sustained survival stress. Stress that endures for months on end -- as stress so often does in patients with HIV infection -- can have deleterious effects on immune function. Patients with chronic high-level stress should be urged to develop a concrete plan to ameliorate the identifiable sources of stress in their lives. Merely formulating such a plan is stress-reducing, because it establishes that the stressors are manageable.
4. Protracted grieving. Patients who experience life-disrupting grief for more than six months should be encouraged to plan a "leave-taking" ritual -- held on a specific day at a specific time, conducted at a meaningful location, and attended by appropriate participants. This event, a kind of second funeral, acknowledges the loss in a meaningful, tangible way and helps bring the period of mourning to a close. Short-term counseling is often effective in bringing closure to a period of protracted mourning.
5. Depression. Depression often goes undiagnosed and untreated in people with HIV disease, in part because many of the classic symptoms of depression -- fatigue, sleep disturbances, decreased libido, impaired concentration -- are also common to symptomatic HIV disease itself. As a result, these symptoms are often incorrectly attributed to advancing infection rather than to depression. Many caregivers incorrectly assume that global demoralization, a profound sense of hopelessness, and loss of direction, purpose, and self-esteem -- all symptoms of depression -- are normal emotional responses to the harsh realities of living with HIV and therefore require no treatment. Given this pervasive belief, it cannot be stressed too often or too emphatically that chronic depression is never normal.
Pharmacotherapy is now standard treatment for clinical depression, and the advent of newer, safer, better-tolerated antidepressants has given providers many therapeutic options. Healthcare providers should also recognize that all patients with clinical depression need regular counseling.
6. Absence of purpose and goals. Research on long-term survivors shows that most of these individuals participate in some sort of personally meaningful, goal-directed activity. Patients who seem to have no goals should be encouraged to revive some of the realistic short-term goals they abandoned when they found out they were seropositive. (Many long-term survivors cite volunteer work as a source of purpose and pride in their lives.) Alternatively, they can be invited to formulate new short-term goals, and to revive, and modify, certain cherished long-term goals -- which may not be as far-fetched as they seemed before the advent of HAART.
7. Lack of self-assertiveness. Self-assertiveness is a common characteristic of long-term survivors, and this trait can be learned by unassertive individuals who are willing to work with trained counselors. Even the least assertive personalities can be made to understand that the meek are not going to inherit the Earth anytime soon. Patients need to learn to be aggressive about husbanding their health, about seeking out support, and about deflecting stress. Providing all HIV-positive people with a "Bill of Patient Rights" can help less assertive individuals understand that they are entitled to certain services, a certain standard of care, and a certain solicitude from those they encounter.
8. Lack of trusted support. The presence of a spouse, life-partner, confidant, or trusted friend in the life of a person with HIV appears to provide a buffer against the negative effects of stress, grief, and depression on the psyche and the immune system. The old rule that "the lonely die sooner" is particularly applicable to this patient population. For this reason any patient who is emotionally isolated, by choice or circumstance, is a person at risk. Individuals who have lost loved ones to AIDS, particularly those who have suffered serial losses, may be especially reluctant to form new attachments, but all people with HIV need someone they can depend on in times of crisis. If they cannot identify those sources of trusted support to their primary care providers, the providers should help them establish such contacts.
9. Poor coping ability in times of crisis. It isn't hard to identify a patient in crisis -- they often do that for you. What can be hard, given the exigencies of modern managed-care health-delivery systems, is providing adequate support in times of crisis. As a rule, the best people to help these patients though difficult times are mental-health counselors. The next best sources of help are those who have weathered such situations themselves -- other patients. You may find it useful to identify individuals in your own practice who appear to have superior coping skills. Invite these individuals to give informal talks at your institution, and encourage all those who doubt their own coping skills to attend -- and to learn from the experts.
10. Inadequate breathing patterns. Many individuals, when under severe or sustained stress, unconsciously hold their breath or take shallow breaths -- practices that produce fatigue and lassitude in the short term and can have more serious effects if sustained. Patients who report that they have trouble breathing, or who are observed to have inadequate breathing patterns, should be instructed to practice simple deep-breathing exercises when they get up in the morning and before they go to bed at night. Yoga, aerobic, and exercise classes that focus on breathing can also be helpful. Patients may also find it useful to post reminder stickers on the telephones they use, on the mirrors they consult, and at their desk or workstation.
11. Insufficient fluid intake. It is more common to encounter an individual who is underhydrated than one who is adequately hydrated. The rule of thumb for fluid intake is eight eight-ounce glasses per day, and intake should be increased during periods of heat or exercise, or when an individual is vomiting or has diarrhea. Few individuals consistently drink eight eight-ounce glasses of fluid a day. In a small number of individuals taking indinavir, underhydration can lead to the formation of kidney stones. In all others it can slow the excretion of wastes, overburden the kidneys, and impose physiological stresses on the body.
Because the C.D.C. and the Public Health Service have linked the drinking of municipal tap water to both biological and chemical contaminants, patients with CD4 counts below 50 cells/ mm3 should be encouraged to drink boiled or bottled water (see "Is It Safe to Drink the Water?" on pages 7-8 of Vol. 1, No. 1 of AIDS Care).
12. Poor appetite, eating habits, and nutrition. In advanced HIV disease, diminished appetite and absorption are common, and cachexia can lead to early death (see "Management of Wasting Syndrome in Late-Stage HIV Infection," Vol. 1, No. 5, pages 91-97). Appetite disturbances can occur in any patient who is taking antiretroviral agents, particularly during the induction phase of combination therapy. Indeed, GI disturbances and diarrhea are to be anticipated with some drugs and drug combinations. Nausea, gastric upset, and diarrhea can be controlled with medication, and appetite can be stimulated with megestrol acetate, oxandrolone, and other agents. Patients who take an interest in the subject will almost certainly benefit from a consultation with a nutritionist. Providers should encourage any dietary choices that appear to be reasonably well balanced and that promote caloric intake, no matter how faddish or unscientific those choices may seem.
13. Sleep disturbances. Recent research has demonstrated that even one night of extreme sleep disturbance can cause substantial derangement in some parameters of immune function. As a rule, a night or two of undisturbed sleep will return these functions to normal. For patients who experience episodic but severe sleep disturbances or who develop insomnia, intervention is necessary. Prescription sedatives do not impede immune function, so these drugs are a useful means of ensuring that people with HIV are well rested. Patients who report that they cannot get to sleep without sedatives, or who report that they awake from sedated sleep, may benefit from counseling that has, as its primary objective, the identification of, and reduction of, the sources of the patient's insomnia.
14. Substance abuse. The term "substance abuse" must be given the broadest possible definition by care providers who are attempting to identify sources of physiological and psychological stress in the lives of HIV-positive patients. Here the list of substances that may be abused is not limited to IV drugs, alcohol, amphetamines, and marijuana; it also includes caffeine, nicotine, and simple sugar. Patients who consume excessive amounts of one or more of these substances impose stresses on their bodies, and they need to be told that these excesses can harm the immune system. Highly motivated patients should be urged to abstain from taking these harmful substances; less well motivated individuals should be urged to adopt a "harm reduction" plan, reducing either the quantity or frequency of their intake. A wide variety of agencies, groups, clinics, and other providers offer substance-abuse treatment programs.
15. Inadequate or inappropriate exercise. Mild to moderate exercise on a regular basis is another characteristic of long-term survivors -- and such regular exercise is all the more important for people with HIV because it seems to increase both the quantity and the cytotoxicity of natural killer cells. All HIV-positive patients should know this. They should also know that even moderate exercise -- a walk of 20 minutes' duration three times a week, for example -- will reduce psychological stress and improve immune function. Recommend that HIV-positive patients who do not seem to be getting sufficient exercise join social groups, clubs, and events that promote physical activity.
16. Repeated exposure to HIV and other infections. Many HIV-positive individuals do not believe that they need to practice safe sex, because they are already infected. They fail to appreciate that repeated reinfection can have extremely deleterious effects on their immune system. Unprotected sex can expose them to more virulent strains of the virus and to viral isolates that are resistant to drugs they are taking. It can also expose them to other sexually-transmitted diseases -- some of them, like hepatitis C, potentially lethal. The dangers of unsafe sex must be discussed -- in detail and in lay language -- with all sexually-active people with HIV. (Care providers may find it useful to photocopy "Risky Business" -- a frank discussion of the risks inherent in unsafe sexual practices which appeared in the April 1997 issue of AIDS Care -- and distribute it to sexually-active patients.)
People with HIV also need to understand how to avoid unnecessary contact with germs, and how to avoid contagion. They need to know how to prepare and store food in ways which ensure that they will not pick up germs from unwashed produce, uncooked poultry, or raw eggs -- or deposit germs on foodstuffs they are preparing. They also need to develop good hygiene habits (like washing their hands before and after eating, or after contact with public toilets). Basic health-education classes can be very helpful in this regard.
17. Limited capacity for self-care when sick. All people with HIV need to know how to take care of themselves when they are sick. This information ranges from the most basic (how to ensure that one is adequately hydrated) to the most sophisticated (how to give oneself a sterile infusion). Providers should help all adults with HIV infection to develop a plan for self-care, one that helps patients to appreciate what they can -- and cannot -- do for themselves during periods of illness. This plan should include ensuring that supplies of medicines, sterile dressings, easy-to-prepare foods, and other provisions are adequate to see the patient through a week or more of confinement. It should also list the names and the daytime and evening phone numbers of people who can be counted on to provide help during an illness (by picking up a prescription at the pharmacy, heating a meal, feeding and exercising a pet, or providing a needed massage). Finally, it should encompass some comforting rituals that promote serenity and encourage healing (such as wrapping oneself in a blanket on the sofa, with a pot of tea and a selection of recent magazines at hand and the TV remote nearby).
18. Limited involvement in/understanding of HIV-related health issues. All those who have provided continuing care to people with HIV recognize that the patients who do well are the ones who are active participants in their own healthcare. They take the time that is needed to understand how their medications work and why compliance is important. They often elect to investigate a range of alternative or complementary therapies. In addition, they learn to discuss their health status on a regular basis with one or more trusted confidants outside the healthcare profession.
Because patients must be active participants in their own healthcare if they are to achieve the maximum benefits of current therapies, providers should make every effort to educate patients about the fundamentals of HIV infection and its treatment. A good place to begin is with the pull out and save feature that appeared in the February 1997 issue of AIDS Care, "Why Combination Therapy?" That laminated, full-color insert uses a simple schematic diagram to explain the mechanism of action of each class of antiretroviral agents, and it shows the role each plays in preventing viral replication. A logical follow-up to "Why Combination Therapy?" is "Mastering Combination Therapy," the Pull Out and Save feature that was bound into the April 1997 issue of AIDS Care. That color insert shows patients how to integrate pill-taking into their daily routines in ways that promote compliance with multidrug antiretroviral regimens.
19. Passive, uninformed relationship with primary care providers. By and large, patients with HIV who do well are also patients who work cooperatively and actively to establish and maintain good relationships with their primary care providers. They develop a capacity for trust and candor in their dealings with those care providers, and they develop a capacity to detect small changes in their health status -- so that they can alert their care providers to problems while those matters are minor and more easily managed. These patients use their appointments efficiently, often arriving at each session with a written list of symptoms, questions, and comments.
Extreme passivity in the face of serious illness is both a symptom of despair and a contributor to physical and emotional decline. Patients who ask few questions, manifest little affect, appear listless and withdrawn, and/or seem isolated and resigned to death may be patients in crisis. Such individuals should be seen by a psychiatrist or counselor, so that specific recommendations can be made about how to interest these patients in their own treatment. Providers can do their part by engaging these patients in discussion at every clinic visit, and by asking them specific questions about their clinical status and their attitudes concerning their health situation.
Jeffrey M. Leiphart, Ph.D., is Director of HIV Prevention Services at the UCSF AIDS Health Project, San Francisco, CA.
Back to the April 1998 HIV Newsline contents page.
This article was provided by San Francisco General Hospital. It is a part of the publication HIV Newsline.