The Good HIV Patient
An excerpt from Good Doctors, Good Patients, by Judith Rabkin, PhD, MPH, Robert Remien, PhD, and Christopher Wilson, PhD, MPH.
Talking to people with AIDS about what constitutes an effective patient and the factors that contribute to long-term survival elicits more complex responses than posing the same questions to physicians. Patients describe adaptive behaviors at different stages of illness rather than a global set of attributes. Patients also place a greater emphasis on the role of attitude and other "inner resources" than do physicians. What patients recognize is that having a positive attitude appears to be a prerequisite to engaging in specific behaviors that are likely to contribute to long-term survival. Without a positive attitude there is a greater tendency to passivity, to let the disease "run its course." Three broad stages of the disease, which dictate overlapping as well as specific strategies and resources have been observed.
The patient's first major task after learning that he or she is HIV positive is self-education. Perhaps most important, the person has to learn what resources are available for information and assistance. Ancillary issues, such as occupational, legal, insurance, and living situations, must also be considered. At this stage, a willingness and ability to take charge, to become informed, and to recognize the importance of a good doctor-patient relationship are the predominant characteristics of the "good" patient.
An additional psychological task is to avoid conceiving of the diagnosis as a death sentence, to remain hopeful, and to maintain normalcy in day-to-day functioning. For middle-class men and women, there is likely to be an extended period characterized by relatively good health in the absence of symptoms, or with only transient and episodic events. Among the poor and less educated, this asymptomatic phase of HIV infection is often not known because many first discover their serostatus during an emergency hospitalization for an acute opportunistic infection.
During this asymptomatic phase, self-education should include the natural history of HIV illness as it is currently understood, the indices of immune status and general health, options to be considered for prophylactic treatments, and physical changes that must be reported. At the outset, the newly identified HIV-positive person needs to carefully select a physician whom he or she considers to be encouraging and positive as well as knowledgeable and experienced. The patient must "first feel entitled to ask questions and say to him or herself, 'I have to think carefully about this.' You must talk to people; start going to groups and developing a sense of where you fit. You must determine what feels right for you and communicate that to your doctor."
Here is the story of a woman, an effective or "good" patient, who struggled against numerous obstacles to obtain the best medical care available:
When I first went for care, I found out there was an infectious disease clinic. The staff told me that I had to wait until I got sicker before I could be seen in that clinic. But I wanted to see the doctors who were seeing people who had full-blown AIDS because they had a lot of information. I figured they might be able to help me before I got to that stage. I couldn't see why you had to wait until you were really sick to be in this clinic.
A friend of mine said that she had the best doctor who knew all about AIDS. As soon as I heard that I started to go to that clinic. I went to three appointments and all three times I saw different providers, not all of whom were doctors. I wanted firsthand care from a physician. My friend told me that she was seeing a doctor there who worked at that clinic only one day of the week. So I went to his office, and I asked to see him separately. I told him that I wanted 5 minutes of his time. He agreed to see me even though he was very busy. I sat down and told him who I was and that I was HIV-positive, and I had heard he was the best. I explained that when I was on drugs I had looked for the best drugs and now that I had HIV, this is a true story, I was looking for the best HIV doctor, because it's the way I do things. I told him that I wanted him to be my doctor. He laughed and he said, "I would be glad to be your doctor."
Her story does not end there because she realized that she needed to remain actively involved as a partner in her own care.
Well, I became his patient; I went to the clinic on his days only; and I only saw him. There were times when he was very busy, and I would say, "No, I want to see him." Somehow I knew that it was important to see the same provider all the time who would know about my medical condition, about what was going on with me, and would know me personally. I wanted to establish a relationship, so that's how I made sure I saw the same person all the time. Sometimes I was in the clinic for 6 hours, literally, but this pushy bitch is alive after 8 1/2 years and doing well.
Once laboratory measures indicate significant immunosuppression, when constitutional symptoms develop, or an episodic infection occurs, patients need to take a new approach to interactions with their doctors. At this stage, honesty about adherence to the agreed on treatment plan and careful observation and reporting of health changes become crucial.
It is during these first two stages of HIV disease that "maintaining normalcy" at work and in social relationships becomes most salient. Some people, at times encouraged by their physicians, leave work and go on disability because of anticipated concern about work-related stress, which could be detrimental to their health. They may then remain essentially healthy for months or years, and in the future may come to regret this "wasted" time. This is a theme recurrently cited by long-term survivors when considering what they would have done differently in the time since their diagnosis: "After I was diagnosed with PCP [Pneumocystis carinii pneumonia], I stopped what I was doing and rented a house in Connecticut, thinking 'This is the last house I'll see.' It was by a lake, and it was very pretty, and I went out there and just laid back and waited to die. But, it didn't happen. Now I see I wasted 2 years waiting for the disease to strike, so I stopped waiting to die by the lake and came back and got on with my life."
Contrary to popular belief, the lives of people who are HIV-positive are not substantially altered by illness on a day-to-day basis. If they do develop symptoms or infections, these often are episodic and limited, with return to a baseline level of health and functioning being common. Eventually, however, a later stage may be reached where illness becomes the predominant factor of life. Today, people live longer after diagnosis of an AIDS-defining condition, and additional effective prophylaxis and treatment of the episodic opportunistic infections like PCP and toxoplasmosis are being developed. Consequently, the first serious chronic illness experienced by persons with AIDS (PWAs) may be a condition like cytomegalovirus (CMV). More people are living longer and entering this phase. It is at this juncture that additional personality attributes and specific abilities appear necessary to sustain a satisfying life and promote survival.
People who have lived for extended periods with significant and chronic illness ultimately relinquish their former lives and devote their attention to survival. At this point, the effective patient must let AIDS-related medical regimens and activities dominate the day, nearly every day, in effect making AIDS their central "job." Patients must stay abreast of new treatment options when standard treatments are no longer effective; maintain confidence in their physicians; be able to accept help from others (either professionals or friends/family); and have faith that life is worth fighting for.
Fighting Late-Stage Disease: A Case Study
Many of these themes were articulated by a young man who had his first opportunistic infection 5 years earlier and who had been receiving daily I.V. therapy for CMV for the past 2 years. At the time of the interview, neither ganciclovir (Cytovene) nor foscarnet (Foscavir) were controlling his CMV retinitis or colitis; he was losing his vision; he had severe gastrointestinal problems, including weight loss and chronic diarrhea; and he was experiencing what was probably CMV-induced reticulopathy causing problems with balance. He spent over 3 hours a day receiving infusions for CMV and recently had chosen to discontinue I.V. feeding, which required another 12 hours a day, because "it was taking too high a price out of my life." This is his analysis of the effective patient:
To be really effective as a patient, AIDS has to be your central agenda, your new career. I suspect a lot of PWAs die prematurely because they just can't or won't give the disease the attention it requires for survival. That's probably not talked about much, but feeling myself lose the energy needed to go through my whole regimen every day makes me realize how many other people must have the same experience. Finally they just give up taking all the treatments and taking all the pills. It's all so medical and it's all so time-consuming. If I were undergoing experimental treatments, as well as exploring new options and doing massage and yoga, it would be a 12-hour day. I can't bring myself to do all that. That's probably the gold standard patient. I'm more of a reluctant one. As the time required for all the I.V. infusions gets longer, I get worse and worse at it. I so resent the time it takes out of my day, where I can be a normal person. I think the ability to function as an effective patient is really a stamina and energy issue.
Another quality of a good patient, unfortunately, is the ability to allow other people to take over your life. You have to be able to withstand the embarrassment of becoming dependent on other people, which can be very humiliating. You have to subordinate your ego and not worry any more about being independent. I think a lot of people can't take that.
I've been dizzy for about 2 months to the point where it's hard to walk on the street, and I've had to allow people to take my arm and guide me, which is very hard for me. People look at me and they know I have AIDS. Yet if I want to get from one place to another, I have to accept this help. As the disease progresses, you let people intrude more in your life. Formalizing some of these things, like arranging for a buddy, a home health aide, a house cleaner, a weekly nurse, making these things sort of official has helped and has taken the strain off friends.
Another characteristic of the good patient is to have a realistic expectation of what your doctor will be able to do for you. My expectation has been that perhaps my doctors can manage this chronic disease which will involve a lot of hospitalizations, a lot of illnesses, and a lot of problems, while maintaining some quality of life. But I don't have any expectations that they can save my life. Certainly not any more. I often leave the doctor's office feeling they don't know a lot more than I do. My doctor has said to me several times in the last year, "I don't know what to tell you" about a major decision. I guess a responsibility of the patient is to accept that or to change doctors--one or the other. You have to make peace with that, you know."
The notion of survival as a function of faith in one's self is echoed by many patients. This is not to suggest the converse--that those who do not live a long time lacked faith in themselves nor does it mean that they necessarily lacked other characteristics of the effective patient. These attributes may promote well-being and longer survival but certainly are not in and of themselves sufficient to extend life.
Behaviors and Attitudes That May Prolong Life
One patient offered these comments on the value of a positive attitude:
Lots of things contribute to long-term survival, but one is a positive attitude. An attitude that there's more than you going through this, that there are people involved in your life whom you love, who love you, that there's a support system you really relate to and enjoy. And, that you have a working relationship with your doctors. You get to a place within yourself that you know what you want to do with your own health care, that there are certain things that feel better to you than other things. As long as you feel that way, it doesn't matter what the outcome is. You have love in your life and goals.
What Is a "Good Attitude" and Why Is It Important?
While difficult to define precisely, "good attitude" is the capacity to continue to anticipate future good times and to believe that your life is worth living, that your survival has meaning to yourself or others, that there are still things left for you to learn emotionally, intellectually, and spiritually. A positive attitude is the conviction that you have value, that you matter, that your life is worthwhile and is worth struggling to preserve.
People with positive attitudes certainly may feel enraged, devastated, heartbroken, and fearful at times; such feelings are inescapable, particularly in the face of chronic, serious illness and death. People with positive attitudes do get sick and die, but it is not because of their attitudes. Although long-term survival with HIV illness is not purely a function of a good attitude, the converse is usually the case: Those who are long-term survivors usually have faith in themselves and the value and meaning of their lives and have gone to great lengths to keep going.
Treatment for AIDS is often grueling, arduous, and unpleasant. Life has to be considered worthwhile to submit to 12 hours a day of I.V. feeding, for example. Eventually many things may have to be sacrificed in the struggle to stay alive with progressive illness. The driving force underlying that struggle is referred to as "attitude."
The Value of Social Ties
Like physicians, patients recognize the influence of social attachments on health and survival. Friends and family can provide good advice, humor, advocacy, and generally assist with concrete needs and services. Even the help of just one other person can be invaluable, particularly in a crisis.
For many, it's an issue of discovering who one's true friends are and investing in those important relationships. Others may find themselves having meaningful relationships that they've never experienced before: "I had no friendships before AIDS," one such person said. "I felt so totally different from everyone else. I worked, but I kept my employees and coworkers at arm's length. Because of AIDS, I've had more of a social life than before."
Unfortunately, the cost of having close relationships is the risk of losing them. As one long-term AIDS survivor said, "One of the hardest things is watching your friends die. That is the wearing part, the exhausting part. After a while it is grief beyond belief. And the longer you live with this thing, the more losses there are. There never seems to be a reward for being a long-term survivor just prolonged grief."
Identity and Transformation
For many individuals living with HIV/AIDS, maintaining one's identity means continuing to do work that has always brought satisfaction and pride. For others, however, leaving a job and engaging in new activities brings greater satisfaction.
Confronting the challenges of HIV may bring about significant changes, including attitudes about living, lifestyle behaviors, inner strengths, prejudices, and communities that once felt foreign and strange. Living with HIV actually transforms some individuals, forcing them to define their goals and identities.
The discovery of HIV status sometimes has the impact of a religious conversion, transforming a life of addiction, prison, and disrupted relationships, to a stable, valued existence. A long-term survivor described the transformations in her life following her HIV diagnosis:
I see life through different eyes today. I appreciate life now. Every day to me is like a new and exciting adventure. Every day that I have I'm grateful for, especially if I'm healthy.
My perspective has changed a lot. I see challenges as an opportunity to do something. Before they were something I had to go through. I'm just grateful to be alive, grateful to be able to help somebody, grateful to have another day. Things are different now than before.
My whole lifestyle has changed, too. I had to change my way of thinking and change my attitude. That's been so hard. First I had to find help for the addiction. I was on drugs over 20 years, since I was 12. I knew I had to go somewhere and get help, and I did. I went to a 12-step program which I still go to today and will probably go to for the rest of my life.
Then I had to address the mental health issue. That was really important, too, I think. You know, why did I stick needles in my arms all them years? Something must have been going on.
And then there was a changing of my attitude--becoming more open. I was a member of ACT-UP. I had never been around gay men. Never in my life. But they were fighting for the same cause I was. They had been dealing with the same issues as me. And so it didn't matter that I was this girl from the Bronx coming down to Astor Place, at Cooper Union, and sitting there with all these people that were of a totally different experience, totally different world. We had something in common. Our hearts were in the same place.
First time I ever saw two men kissing, I thought, "What's happening here?" Then I realized that one of them was sick and the other one was his lover and was consoling him. And all I saw was love. So all those other notions I had started to dissipate, you know, and things just started changing. My heart became lighter.
There's been a change in my family setting. My children and I live together, and there's a real nice, warm home. There's a lot of dialogue, and a lot of love and support for each other. I'm able to help my son pay his college tuition, where I couldn't do that before.
Keeping Busy and Setting Goals
Keeping busy is a way of surviving. But, more than remaining active for its own sake, there are tremendous psychological, and perhaps even physical, benefits to developing and maintaining specific goals when living with HIV. Goals may be relatively long-term, intermediate, or even very short-term. What's important is maintaining incentives to live, to feel that there's something left to accomplish or to learn or to contribute to the world.
Why Aren't All Patients "Good" Patients?
Inadequate medical care is one of the most significant barriers to being a good patient. Access to appropriate care is the first prerequisite. To some extent, this may not be within the patient's control, depending on finances, geography, and health insurance. Patients, however, need to recognize the importance of their role in identifying and obtaining the best health care that is possible. Often, because of cultural, socioeconomic, or personal factors, many patients do not see themselves as having any choice when it comes to where, how, and from whom they receive health care services. Since most patients are not as persistent as the woman described earlier in this chapter, it's often helpful for a counselor or some other informed person to encourage and facilitate patient choice and action.
And, sometimes people can work together to obtain better care. For example, there is no major hospital in the area of Provincetown, Massachusetts. The Provincetown AIDS Support Group solved this problem by raising money to purchase a van. Community volunteers use the van at least once a week to drive people with HIV illness to the medical facilities in Boston.
"I Don't Want to Talk About It"
One man explained:
The patient has to be able to articulate his problems because the doctor isn't going to be able to read his mind. That's a problem sometimes for me and my friends. The majority of people won't talk about their emotions or physical pain. They don't want to be sick, so they don't admit it to anyone, including their doctors. Some things like diarrhea and loss of bowel control are embarrassing to discuss. Talking about pain isn't so much embarrassing as it is difficult to acknowledge. It's hard to accept that you're not able to do certain things anymore. You become an expert at tuning it out. All of a sudden you can't tune it out any more, but the doctor isn't a mind reader.
In the context of AIDS, survivor guilt generally refers to seronegative people whose friends, lovers, and community become sick around them. However, it also has meaning for people who have HIV infection but who live longer or stay healthier than others who became infected at the same time or subsequently.
One patient, who lived for 6 years after he was first diagnosed with PCP, was the only one left in his support group. Not only did the original members die but also all the people who had joined in subsequent years. He actually said, "I feel survivor guilt myself in the face of all these friends who have died recently. I would go see them with rosy cheeks and a bounce in my step and I couldn't help but feel them glaring at me, 'What's he doing that I'm not?'"
Another PWA stopped taking care of himself because his lover, who seroconverted after he did, was declining more rapidly. So he stopped working out, stopped trying to eat carefully, stopped the meditation he had found soothing. Only after his lover had died and he noticed he was still feeling reasonably good, did it occur to him that he had been trying to minimize the difference in health status between them by neglecting himself.
Not Trusting Physicians
Patients, like physicians, generally recognize that honesty is essential in the doctor-patient relationship and is seen as a reflection of trust in the physician. One patient who worked at a social service agency for HIV clients observed, "There's a certain type of person who is terrified. These patients panic and don't believe that anyone can help them. They try a couple of doctors, but they don't tell one about the other. All of their common sense goes out the window and fear takes over. They just don't believe any doctor is going to help, and they don't trust anybody. The one person you've got to trust in all this is your doctor. If you don't trust him, then you don't have anything."
Little Faith in Treatment
There may come a time when the patient concludes that there are no remaining medical solutions. One man expressed his feelings at this stage poignantly: "We AIDS patients go into these physicians' offices with an expectation that they're going to cure or solve our illnesses. We were raised that way. Is that completely ridiculous of us? We have the expectation that doctors will make us better, but in fact they can't. It's not because they don't want to. They just can't. They may even look at us and think we are ludicrous to come in with this expectation."
A time may come when some patients wonder if they want to spend their remaining time "sitting in an empty room looking at a bottle dripping." They may prefer to discontinue treatments and engage in more pleasurable activities. One patient said, "I certainly know people with AIDS who spent their last year doing what they enjoyed, instead [of continuing with treatment]. That's a valid idea to me. I probably won't know until the time comes if I'm glad or sorry I've stuck to treatments."
When illness persists unremittingly, and the physician cannot offer additional remedies, some people will shed the role of patient and discontinue their medical care (except for comfort). As will be discussed in some detail in Chapter 11, we do not regard this decision as a personal failure of any kind. We believe it is the right of each individual to decide when to redirect attention from conquering illness to living and dying with as much grace and comfort as possible. At that point, the patient role may no longer be relevant.
This man battled with progressive and finally total blindness, partial deafness, loss of balance, loss of bladder control, and increasing neuropathy that eventually confined him to bed, unable to turn over by himself. He died 6 months after this conversation, talking about new treatment options and alternative strategies to the very end. When he was finally put on I.V. morphine, he insisted on taking dextroamphetamine (Dexedrine) to keep himself alert when he was awake. He considered himself an indifferent patient, but his friends, and we, thought he was a champion.
This article was provided by NCM Publishers, Inc.. It is a part of the publication Good Doctors, Good Patients.