Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol
  
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

What Makes a Good HIV Specialist?

An excerpt from Good Doctors, Good Patients, by Judith Rabkin, PhD, MPH, Robert Remien, PhD, and Christopher Wilson, PhD, MPH.

1994

Competence and Compassion

An ethicist who studied physicians and patients observed that:

Two excellences or "virtues" are popularly held as appropriate to and necessary for physicians: competence and compassion. Competence for physicians takes two forms. One component would include those capacities grounded in medical knowledge and its application: diagnosis and treatment. A second component could be characterized as nonmedical though traditionally associated in an inseparable way with the physician's role: understanding, sympathy, comfort, patience. A second premier excellence for physicians is compassion, understood as a sympathy for the distress of another with a desire to help. Compassion is not a relic that remains from the period of medicine's impotence. It is a central pillar upon which patient-physician relationships are built (Shelp, 1984, p 352).

AIDS is unlike other illnesses because of the severity, number, and variety of progressive, often life-threatening diseases treated with multiple toxic medications that require close and ongoing monitoring. Consequently, HIV patients see far more of their physicians over a longer period of time than the average patient, and for more serious problems. Although all patients seek competent physicians, regardless of how infrequently they are consulted, compassion is most relevant in cases of chronic illness.

Advertisement
The needs of AIDS patients are thus qualitatively, as well as medically, unusual. Compassion and related qualities like trust, communication, and accessibility become essential. Outstanding HIV specialists also are creative and aggressive in their approach to treatment, helping the patient plan for change throughout the disease course and facilitating home treatment when possible.

Curing versus Healing

In understanding what makes a good HIV specialist, it is also helpful to consider the distinction between "illness," which refers to objective disease that physicians seek to "cure" by technical medical methods, and "sickness," which is a subjective state that can be "healed" (Cassell, 1976).

A person can be ill (e.g., with diabetes, hypertension, or cancer) and not even be aware of the disease. However, one cannot be sick without knowing it. Sickness entails feeling disconnected from the world (the healthy world), losing one's usual sense of indestructibility, and having a perception of diminished personal control. These manifestations or "symptoms" of sickness can be healed, at least to some extent, even if the illness cannot be cured or, indeed, progresses.

Although healing can be effectively performed by nonphysicians and indeed by nonmedical people, it has always been an integral part of medicine. For most of history, medical cures were absent. However, since the 1930s when the sulfonamides were discovered to treat bacterial infections, enormous progress has been made in the discovery and development of cures for many diseases. But there has been a corresponding decline in the attention and energy devoted to the practice of healing.

Western medicine and an informed, experienced physician are needed to cure complicated diseases like those associated with HIV infection. In addition, a caring, compassionate practitioner is needed to heal the patient, even when cure is not possible. It is important to recognize the difference. Because both disease and sickness are components of HIV illness, the ability to heal as well as cure is an essential attribute of an effective HIV physician.

Physician Perspectives

Experience with HIV

Knowledge and experience go together. There are few authoritative textbooks on the treatment of AIDS-related problems because new findings make textbooks rapidly obsolete and because there are no standard treatments for a considerable number of AIDS-related conditions. Consequently, experience is the basic source of knowledge, including familiarity with signs and symptoms of HIV illness, and currently available procedures, interventions, standards of treatment, and the current research literature.

People living with HIV/AIDS cannot afford to seek care from a physician who may be otherwise competent but is not familiar with the general terrain of HIV disease. The chances are too great that important problems will be missed. When there is an option--and there almost always is--it is best to look for a primary care provider who has accumulated significant experience in providing direct HIV care, has trained in an HIV care setting, or is affiliated with colleagues who have considerable experience treating people with HIV. If a health care provider says that he or she doesn't need to know that much about HIV and its associated illnesses to provide good health care to an HIV-infected person, another provider should be sought.

Interpersonal Skills

Physicians, like patients, emphasize interpersonal skills as an essential aspect of being good at AIDS medicine. The effective or "good" doctor is one who takes the trouble to talk to people, who is sensitive to personal issues raised by patients, who has the time to sit down and listen to patients, and who will treat patients as individuals, not merely "charts" or cases. As one physician noted, "Knowledge is useless without humanity."

The role of kindness was stressed by many physicians:

It's amazing to me how many people continue to go to doctors who treat them unkindly. I think it's appalling. For example, I know an infectious disease specialist who is unbelievably smart, and I call him for all kinds of questions. I think he's brilliant, but I wouldn't send him a friend with HIV disease because I don't think he's that nice to people. I'd send a friend for a diagnostic dilemma but not for ongoing care.

Another physician elaborated on what he meant by compassion:

When I refer a patient I want someone accessible, sensitive, and spiritual. The role of the AIDS doctor goes beyond medicine. He is going to be taking care of the patient, most likely, in the last moments. Now is that going to be done with the doctor's head in the chart, or will he hold the patient's hand and take care of mom as well?

Also important is commitment to working with AIDS and the people who have AIDS. One physician felt strongly that, "Someone with HIV disease should go to doctors who have committed themselves to an ongoing relationship with this disease. The doctor's sexual orientation doesn't matter but I think patients should run as fast as they can from any doctor who even hints at disapproval of alternate lifestyles."

Hospital Affiliation

In general, physicians feel that hospital affiliation is important. Although some experienced and respected HIV physicians do not have any hospital affiliation, for the most part hospital privileges are necessary. As one physician said, "It is inevitable in the history of any given HIV patient's disease that hospitalization will be required."

A Primary Care Orientation

The ability to see the big picture and to treat the patient as a whole enhances medical management. One physician expressed this in terms of "having a primary care orientation, which means focusing on the needs of the patient rather than on the specific illness."

Home Care

One of the major gains in AIDS care during the last decade is better management of opportunistic infections and secondary illnesses, which can now often be treated on an outpatient basis. Although hospitalization is sometimes unavoidable, home care is often feasible and preferred. The chronicity of HIV illness, the range of conditions that may occur over time, and increasing third-party restrictions on duration of hospital stays create the opportunity and the need for treatment in the home setting. New technologies in home care have also altered the practice of AIDS primary care.

With some exceptions, most acutely ill HIV patients prefer to be treated at home rather than in the hospital. And even from a medical standpoint, it may be safer for a patient with a suppressed immune system to avoid hospitals because of nosocomial (hospital-induced) infections and contagious diseases like tuberculosis. Some patients wish to avoid the hospital because of past experience with unsympathetic staff who do not want to work with AIDS patients. For others, home care is preferable because of the opportunity to remain in a familiar, comfortable environment with considerably more personal control.

Home care can, however, present a tremendous logistic as well as clinical challenge to the HIV physician. For the HIV specialist who is already overscheduled, arranging the myriad details of home care can be overwhelming. It is much easier if all patients are in the same hospital, where the physician is not responsible for nursing coverage, delivery of medical supplies, and coordination of health and support services. In the hospital, the physician can stop by daily or more often and see how the patient looks and what is happening. And, these visits are reimbursed in full by insurance. In contrast, management of a patient at home, where skilled nursing care is needed, usually means multiple telephone calls at all hours of the day and night should plans go awry (and they often do), as well as paperwork, for which the physician is not reimbursed. Since daily visits are not practical, it is necessary to rely on the home care nurses for reports of the patient's condition. Plans of care must be discussed with the field staff, who may have little expertise in treating HIV illness. This is often complicated by high staff turnover, requiring the physician to repeat information that he or she has already communicated. The physician also must coordinate laboratory tests and services provided by multiple agencies, all with similar but not identical requirements and policies. Altogether, home care is time-consuming, complicated, and more subject to problems than is hospital care.

The Physician's Contributions to Long-Term Survival

The physician contributes to survival by providing quality HIV medical care, which includes "being meticulous and up to date" and "being on top of things and getting people in promptly, when they're ill." An important part of this expert care consists of the timely initiation of appropriate prophylactic treatment.

Vigilance. Diagnosing illnesses and opportunistic infections early and treating them appropriately and aggressively is a hallmark of excellent HIV care and occurs most readily when both patient and physician are vigilant. One physician said, "In caring for AIDS patients, you have to be very quick on the draw. If a patient calls and says that he has a headache and fever, he has to be seen right away. We've learned to recognize relevant symptoms and evaluate patients very quickly." Another physician explained, "There are doctors who do better than others, because of experience and attitude. A patient who comes in with clear-cut PCP [Pneumocystis carinii pneumonia] symptoms could wind up being treated for bronchitis by an inexperienced clinician. Physicians may delay diagnosis or unintentionally mask a diagnosis by giving an antibiotic for every fever, which makes finding MAI [Myobacterium avium intracellulare] difficult."

Education. Physicians can also contribute to survival by educating patients about medical procedures. Part of this entails encouraging a sense of participation and partnership. In addition, preparing patients for specific medical procedures reduces anxiety. One physician felt it was important to explain and describe the system for patients "so that when they go for an MRI [imaging procedure], they know that they're going to be in a weird tube. Or, if I'm ordering a zillion tests, I let them know about this. Or, if they're going to meet a doctor who has an edgy personality, but is very good technically, I will tell them, this is what he's like as a person. "

Another physician spoke of how important it is to not assume understanding on the part of the patient:

An oncologist once described having cancer as parachuting into a jungle without a map or a compass. That must be what it's like to have an uncharted disease. Often I assume that patients understand, when actually they don't. When I worked with patients who were political activists or who were physicians themselves, I used to think, "I won't explain that, they know that." I realize now that's absolutely untrue. So, now I tell patients how I've reached a decision, and they really appreciate that. It doesn't matter how smart they are.

This style of interaction on the part of the physician provides reassurance and comfort as much as concrete information. It seems likely, also, that it enhances patient compliance with difficult and often anxiety-provoking procedures that may be a necessary part of quality care.

Dealing with the Uncertainty of HIV Disease

One of the more challenging tasks for physicians, as well as other professionals who work with HIV patients, is to help people anticipate what lies ahead. No one can predict how an individual case will evolve. People who are still well often ask how much time they have before the onset of symptoms or infections. Some people, especially when first tested, ask whether illness is inevitable. Is it appropriate for the professional to say, "Who knows? You may never get sick. Nobody can tell when scientists will make a break-through"? If this answer is given, it is usually with the intention of offering hope and an incentive to cope. In this, as in many other aspects of HIV care, there are no absolute answers.

Most physicians stress the value of communicating optimism during the early stages of the infection. In general, people are encouraged to go about their daily lives. Of course, some issues should be addressed, such as choosing a physician and assessing insurance needs, which itself might entail decisions about job changes, disability, and so on. Some physicians feel this is an appropriate time--before the person gets sick--to address the "paperwork" of death (health proxies, wills, "do not resuscitate" orders, funeral arrangements). "I always tell people right away when they are HIV-positive, 'Listen. We should all have a living will, we should all know exactly what we want. The biggest problem is losing control. So you take care of it all now, you put it in a box, you put it away, and you go back to work. You know everything is in that box.'" Other physicians, however, prefer to wait until later in the disease course to bring up this subject.

Even when an AIDS-defining condition is diagnosed, most physicians feel that an encouraging tone is appropriate. For example, one physician explained, "If they are newly diagnosed with PCP, I tell them I'm fairly confident that we can maintain a good quality of life for 2 or 3 years, and with prayers and hope and good luck perhaps by then we will have a better handle on things. I think this is honest. It's what I like to think."

Another physician offered the following approach:

Many people have asked me, "How much time do I have?" Let's say somebody has 20 T4 cells. I will say, "Well, things have changed. It used to be that the majority of people lived less than a year. Most people now live 2 years, and I know occasional people who live 3 or 4 years. But they are the exceptions." And that's usually a good enough answer for people. They will not ask you much more than that.

Physicians are often reluctant to cite illness statistics as a way of helping patients understand what to expect. In fact, one suggested doing the opposite:

I don't think it helps at all to say, "With a diagnosis of X, there is a 62% chance you'll be dead in 6 months." It just doesn't pay. I always say to people, "You know all about the statistics," even if they don't. "So let me tell you about the 20% of people from the San Francisco Men's Health Project who are asymptomatic after 10 years." Everyone knows the bad stuff, but not everyone knows the other side of it.

Patient Perspectives

What I like best about my doctor is that she's well informed. She doesn't just sit down and prescribe things for me. We have conversations. She gives me different options. Ultimately, I make the choice about what I'm going to take. I don't feel like she thinks she knows it all. I feel like we work together. I also feel that she's very sensitive and humorous. She's very respectful. She treats people with dignity. She takes time with people to explain things. Those are the qualities that I see in her and that I like about her.

The characteristics of the "good" HIV physician as described by experienced patients are not very different from those given by physicians. They include practical considerations, such as being knowledgeable and having expertise about HIV disease; behavioral factors, such as taking the time to explain things; willingness to participate in a "partnership" with the patient; and being sensitive and caring. Many AIDS long-term survivors ultimately find one physician with whom they are tremendously satisfied--a physician they respect and feel respected by, whose expertise they trust and admire, and who is supportive, encouraging, and cares about them. They often attribute their survival, at least in part, to their relationship with their physician.

The criteria and qualities most often mentioned by patients in defining what makes a good HIV specialist were:

  • Experience with HIV
  • Interpersonal skills
  • Hospital affiliation
  • How the office practice is organized and managed
  • Ability to arrange and manage home care
  • Vigilance
  • Willingness to help patients understand and negotiate the health care system
  • Creativity and assertiveness
  • Communication
  • Encouragement, compassion, and understanding
  • Sensitivity to the uncertainties and anxieties of HIV illness
  • The Medical Practice

Even if a physician is a superb clinician, the medical needs of HIV extend beyond the individual. And while affiliation and practice structure would appear to be within the province of physicians, how a medical practice is set up can significantly affect the quality of a patient's experience.

Hospital Affiliation and Referrals. Patients give various reasons for hospital preferences, including geographic location (i.e., near home, in a preferred neighborhood), physical accommodations, and, probably most important, the hospital's reputation for HIV/AIDS care.

If a physician does not have admitting privileges at any hospital, the patient may be referred to a municipal hospital, with its own staff, or another physician may have to admit the patient and be responsible for him or her on a daily basis. When the original primary care provider is not involved, the result can be fragmented care.

Referrals to Specialists. Almost as important as the physician's own level of HIV experience is his or her ability to coordinate referrals to experienced and knowledgeable subspecialists. As illnesses develop, such subspecialty skills as oncology or gastroenterology are often required for optimal care.

Office Management. Although hospital affiliation is a central issue during periods of acute illness, people are seen most often in the office as outpatients. A well-run and well-staffed office can make a huge difference in the experience of being a patient. Simple courtesies by staff as well as physician, such as being greeted by name and hearing some expression of personal interest, are particularly appreciated when visits are frequent. Patients also mention the importance of getting timely and effective help with paperwork for insurance reimbursement and benefits, which may require frequent resubmissions.

In many busy offices, a particular staff member may play a central role in relating to patients, helping to solve problems, and facilitating access to the physician. Sometimes, simple friendliness and humor help reduce tension. One man said, "When I go see Dr. X, I am so anxious and upset. And there's this long wait, and I get more anxious the longer I wait. But when Julio is there at the desk, we talk about his love affairs and all of his adventures, and it's always like a soap opera. I laugh and relax and feel okay by the time I see the doctor."

Telephone Calls. Getting through to the physician by telephone, or being able to leave an urgent message, is critical, according to patients. No one who is sick or frightened wants to hear a taped recording, "The office is closed until tomorrow and this machine takes no messages." Another issue that is particularly important to patients is the length of time it takes for the physician to return calls. Those who have experienced (or have been present when someone they care about has experienced) new and frightening symptoms that cause severe distress or seem to signal an impending medical disaster can appreciate the tension of waiting by the telephone for the physician to return a call. This may take hours or, in some cases, even days, even when the physician is not out of town. On the other hand, HIV specialists may get literally dozens of calls in a day (not only from patients but from nurses in home care situations, pharmacies, insurance representatives, and quality assurance personnel in hospitals). No matter how much time may be allocated for returning calls, it is never quite enough. In the most efficient medical practices, an experienced assistant screens calls, transmits messages, and even returns calls about simple matters. The routine is distinguished from the urgent, and the physician is freer to concentrate on situations that require his or her intervention.

Coverage and Availability. Physicians differ widely in their personal availability, both during and after office hours. Some have younger associates who are likely to see new patients. Others feel that referrals come to them because of their personal reputation and that seeing such patients should not be delegated. After hours, some share coverage and others do not.

Creativity and Assertiveness. Since the problems of HIV infection are new to Western medicine, management of the disease requires creativity and an assertive approach. In the absence of cures, persistence and innovation are welcomed by patients:

What I like most about my physician is that he's creative. He's never said, "It can't be done, there's nothing I can do for you." He always seems to have a solution. It may not be orthodox, but it's something. He knows a lot about research. He seems to know what's happening in the AIDS community. And he taps a lot of resources. He doesn't say, "Well, you've got this and there's nothing I can do about it." He'll go as far as he can to get a clear diagnosis and then he'll try something. It may not work but still he gave it a shot. You feel if something doesn't work, at least he left no stone unturned.

Communication

To establish a good relationship, the physician needs to take the time to provide explanations to the patient. While assertiveness by the patient plays a role, the physician must believe in the merit of informing patients and involving them in their own care. He or she must be willing to invest time and effort explaining office procedures and coverage, philosophy of care, rationale for different treatment strategies, diagnostic and treatment procedures, and what to expect from treatment. Unfortunately, some of the best HIV physicians are so busy that time for patients always seems limited. "My major complaint," said one patient of his physician, "is that his practice is too big, and although I consider him to be a good doctor, I need more time with him; it's been a constant source of frustration."

Ironically, it's easier for patients to insist on adequate explanations from their physicians when they're feeling well. When they're experiencing pain, fatigue, or an acute illness, patients must rely on the physician to initiate explanations. "What's good about my doctor is that she takes the time to explain things--if I pin her down. But that's the problem: As I get weaker, I find myself less able to pin her down." At such times, the otherwise "vigilant" patient may not have the energy or ability to ask all of the important questions.

A Good Listener. The flip side of providing information is being a good listener. Although all patients like to feel they are being listened to, this may be a particularly important skill with an illness such as HIV, which is fraught with uncertainty. Patients have worries and apprehensions that need airing. Trust in the doctor-patient relationship is particularly important in later-stage disease, when patients often feel less in control and more in need of someone who knows and respects their wishes and desires. Sometimes, at the end, being a listener, a "witness," is the most valuable service that one can offer.

Encouragement, Compassion, and Understanding

If faith in one's treatment plays a role in the effectiveness of that treatment, as many believe, the physician can, by his or her encouragement, affect the outcome of treatment. Moreover, a pat on the back by one's physician can be extraordinarily meaningful. "He always tells me that I'm a great patient and he's very proud of me," an appreciative patient remarked.

Another patient described how his physician kept him from giving up when he felt defeated:

Recently, there have been times, I will admit, when I want to pack it all in. I get so tired of being a receptacle for drugs. I just want to take all those bottles of pills and throw them in the trash, lay back, and let nature take its course. And my doctor always sighs and says, "I wouldn't advise that, Raymond. It's a possible course of action, but I wouldn't advise it. You and I both know what course nature would take and fairly quickly."

In addition to support and encouragement, patients appreciate physicians who are concerned about them as individuals. One man explained:

The first thing that comes to mind, which may sound silly, is that he always puts his arm around me at the end of the visit, which may not sound like anything but I feel that he really likes me and really cares about me, and that he doesn't mix my file up with someone who has a similar name, or he doesn't only vaguely know who I am. You may wait 3 hours to see him, but when you see him he is 100% there with you. Office visits are very long and very thorough.

The Doctor-Patient Match

Physicians often point out that a good patient is only half of the equation that comprises the doctor-patient relationship. "There's a difference between what is a good patient in the abstract and what is my good patient," one doctor said. "I think there are different types of people and when they find their own best style of doctor, there's a melding of personalities. Since I'm pretty aggressive, I attract a certain type of patient whereas I'm going to scare away another type. You want to work with someone that you can get along with, that you enjoy, and vice versa." In view of the long-term nature of relationships with HIV and people, the match between physician and patient is critical for both to be maximally effective.

Some patients may be particularly drawn to physicians who are comfortable combining conventional and alternative treatment strategies. While almost no one refuses to let their patients engage in alternative therapies as long as they do not preclude standard treatments, some are more enthusiastic about them than others.

Staying the Course. Patients are often concerned about being abandoned, particularly if they become terminally ill. "Ultimately, it's not the fact that I will die of this that bothers me nor am I afraid of death itself. It's the process of dying of AIDS and of being abandoned that really frightens me. I want to know that my doctor will not abandon me if he feels like there's nothing left to do or because I don't have any money or insurance left." Such reassurance can help patients cope with fears of an agonizing and undignified death.

What Patients Want to Hear -- What Physicians Are Willing to Say. Patients want their physicians to be open, communicative, and frank about their beliefs regarding diagnosis, treatment, and, most importantly, what they do and do not know about HIV illness. Patients also want their physicians to be hopeful yet realistic. Striking an appropriate balance may be quite difficult. As one patient said, "He's not pessimistic. He's very even tempered, although he's not overly optimistic either. He's never given me any false promises or miracles. He's skeptical, but on some level optimistic."

Both patients and physicians praise the virtue of honesty, but they sometimes disagree about just how honest the physician should be. Physicians generally say they emphasize the positive and are, if anything, unduly optimistic up to the point where significant deterioration occurs. However, patients are apt to perceive the converse. In describing a conversation with his physician, one long-term survivor provided an example of the delicate balance the physician faces in trying to be candid and at the same time encouraging. He had just described at length how wonderful he thought his physician was, how caring and helpful. When asked about any problems, he gave this answer:

Sometimes I want to ask him, "Am I going to make it? Am I going to pull through this illness and be better?" And I don't ask him that question because I feel it's unfair, that it puts him in an untenable position. So I've tried not to ask him, but occasionally I wouldn't mind a little more encouragement. This is true in my life in general sometimes you wish people would encourage you even if they're lying. For example, for people to say, "You're going to be fine. Don't worry, they'll find a cure, you'll be all right, just hang in there a few more years." Nobody ever really said that because there's such a widespread reluctance to be naive or "pollyannish." Nobody wants to sound false in that way.

I asked the doctor if I should go to graduate school or make long-term plans like that, and that was sort of a sneaky way of asking him, "Do I have a future?" And he said, "Yes. You should definitely go to graduate school." But then he said, "If something changes, then we'll adjust to that." So I got a sort of 50/50 answer and I would have liked something more, even if he didn't really believe it. That caveat attached to his answer really made me feel discouraged about making long-term plans.

Another very articulate PWA listened to this passage and commented as follows:

What's nice about my doctor is that I think I'm up on everything, and he will come up with something that hasn't been published yet, and I haven't heard of yet. I'll hear about it maybe a month after he's told me and he was accurate. But I get the 50-50s, too, from him, and I don't really push it anymore because I don't want the 50-50s. I deal with the immediate with him.

[Interviewer: Well, what's a doctor to do?]

Oh, sometimes I think it would be very good to just go into a flight of fantasy with the patients and -- like graduate school -- say, "Yeah, sure, GO to graduate school." You might not take anything on because you [worry that you] could be hit by a car. Anyone could be hit by a car. So, I mean, you have to rearrange everything, but unless you are hit by a car, you're going to finish graduate school. I sometimes think doctors are too scrupulous and are not leaving enough up to God, to fate, to whatever. Maybe you will get through graduate school and maybe it's just the long-term goal you need to carry you through. I really do believe that long-term goals are important.

Physicians who read both these patient interviews commented as follows:

The first physician answered rather briefly:

I am not fanciful. People ask me, "Are they going to have a cure for this disease?" And I simply say "No." I have a real hard opinion on that and I just tell people, there is no cure for this disease. It's going to go the way of smallpox. It's going to have to be extinguished over time. And the population affected is going to die of the disease. And that's how it is.

The second physician stated:

I would say that those two patients could very well have come from my practice. Basically I try to encourage people--it sounds so trite--to live for the day. But not to be unrealistic about changes. And then you adapt and adjust. It seems to me that these two people want to hear a flight of fancy. But I'd bet that those two people wouldn't be happy if they really thought their doctor was being too flip in terms of the positive. Part of what I read in there is that they're comfortable with the fact that their doctors are not going to limit their possibilities except with what could be realistic limitations. I think that's all you have to do. That's just life.

The third physician said:

The patient puts a lot of trust in me as the physician and trusts that I am going to be honest with him. And so if I were very misleading, way down the line it could backfire. I tell patients, "You can almost turn this around to your advantage. So many people go through life not appreciating each day, and it's important to live more for the day. And I also tell them they should do with their life what they want to do, and I encourage them not so much to make long-range plans as to go on with life. Sometimes patients will set up a goal with the idea that nothing can happen until that goal is achieved. But I try to discourage them if it seems overwhelming . I have patients who ask me "Am I going to make it?" I remind them of multiple different options. I'll say something like, "AZT has been shown to give you 7 months of life; if you do prophylaxis, that'll give you more time; who knows what's going to be available then--that's the kind of picture I paint. I just think my role is to be honest, not cruel, but honest with the patient--that's what trust is.

The last physician offered a more complex response:

I encourage people to make long-term plans and to travel and to take new jobs. When life deals you a terrible blow, that can be a time when you reevaluate and decide what's important . And I do say to people, "All you have to do is stay well, stay stable for a few more years until there is a combination of drugs that puts you into remission. I don't know if there'll be a cure in your lifetime, but I'm hoping that you can remain well long enough--with a combination of good treatments and taking really good care of yourself--to take advantage of any drugs that might be developed." Do I believe it? Some days I do and some days I don't. Today I don't but last week when I had a good day or two, I believed it. If you had said to me 10 years ago, "In your lifetime you'll see people with HIV survive for years and years," I would have said, "You're nuts." So we've made a lot of progress, although obviously not enough. That's my most optimistic view of things. But, my patients are really smart. And I'm not going to feed them B.S., because then I'm not credible.

These physicians are not willing to join their patients in denial. And while they encourage optimism and long-range planning, they seem to feel that their role is to help patients remain realistic. Patients, on the other hand, may at times engage in a sort of magical thinking. "If the doctor would only say, 'Don't worry. You'll be all right,' then I will be." Unfortunately and ironically, if physicians gave patients what they say they want, the very foundation of the relationship--honesty--might be undermined and even irreparably damaged.

References:

Shelp EE. Courage: A neglected virtue in the patient-physician relationship. Social Science and Medicine. 1984;18:351-360.

Cassell E. The Healer's Art. Philadelphia: Lippincott; 1976.


This excerpt is from Good Doctors, Good Patients by Judith Rabkin, PhD, et al. Copyright © 1994 by NCM Publishers, Inc., 200 Varick Street, New York, NY 10014.


For more excerpts from Good Doctors, Good Patients, click here.



  
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

This article was provided by NCM Publishers, Inc.. It is a part of the publication Good Doctors, Good Patients.
 
See Also
HIV Medications: When to Start and What to Take -- A Guide From TheBody.com
More on Choosing and Working With HIV Specialists
Advertisement:
Find out how a Walgreens specially trained pharmacist can help you

Tools
 

Advertisement