Patients with chronic and terminal diseases like AIDS, cancer, and end-stage lung and heart disease frequently do not talk with their clinicians about the kind of care they want at the end of their lives.^1-4 Randomized controlled trials of interventions to improve patient-clinician communication about end-of-life care have included use of advance directives,⁵ educational interventions with patients and/or physicians,^{6, 7} and the provision of prognostic information to patients and physicians,⁶ but have not been successful in improving communication about endof-life care. The reasons these trials have been unable to improve communication are not entirely clear, but part of the reason is likely the complexity and difficulty of communicating about palliative care and particularly about dying and death.

Advances in the treatment of HIV infection have been dramatic and unprecedented with marked improvements in survival and quality of life.^{8, 9} The new antiretroviral regimens, however, are not successful for all patients; many patients find themselves facing a death from AIDS at the same time that many others are having favorable responses to antiretroviral therapy. Patients and clinicians have described death from AIDS as changing from fate during the early era of AIDS to tragedy during the era of highly active antiretroviral therapy.¹⁰ In this way, caring for the patient dying of AIDS has become more similar to caring for patients dying of other chronic diseases and some clinicians report that these changes have made it harder to talk with patients about dying and end-of-life care.¹⁰

Similar to the data on patients with other chronic diseases, most patients with AIDS have not discussed with their primary care clinicians the kind of care they want at the end-of-life. In a survey completed in 1985 of patients with HIV infection, although 73% wanted to discuss lifesustaining treatment with their physicians, only one-third of patients reported having had such a discussion.¹¹ In a study of 1031 persons with AIDS published in 1990, 68% knew of advance directives, but only 11% had talked with their provider about advance directives.¹² More recently, in a U.S. probability sample of 2864 patients representing 231,400 adults receiving care for HIV, 50% of patients reported having some discussion about end-of-life care with their provider and 36% of patients reported having an advance directive.¹ Although these proportions may be increasing over time, still at least half of patients with HIV infection or AIDS have not discussed end-of-life care with their primary care provider and two-thirds have not completed advance directives. Furthermore, many of these studies document important differences in the proportion of patients who discuss end-of-life care with their primary care clinicians according to HIV risk factor, race, and ethnicity. Gay men are more likely to have been counseled about and executed a prior directive than injection drug users ^{1, 12} and whites are more likely to have discussed endof-life care than blacks and Hispanics.^{1, 2} Furthermore, even when clinicians communicate about end-of-life care, injection drug users report lower quality of communication about end-of-life care than gay or bisexual men.¹³ Therefore, many patients with HIV infection, particularly minorities and injection drug users, represent important patients for whom to improve the quality of communication about end-of-life care. Since persons with AIDS who have discussed their preferences with their clinicians are significantly more likely to receive care in accord with their preferences,¹⁴ these studies suggest patient-clinician communication may be an important step in providing appropriate end-of-life care but that this communication occurs infrequently.

Several surveys of HIV-infected individuals have examined patient preferences for life-sustaining treatment, and understanding these preferences may help clinicians discuss palliative care with their patients. Singer and colleagues showed that of 101 patients with HIV, 60% to 70% of patients would want mechanical ventilation and CPR in the event of an acute potentially reversible illness.¹⁵ Mouton and colleagues showed that patient treatment preferences were associated with patient ethnicity in that whites were twice as likely to prefer a treatment approach that focused on relieving pain as opposed to extending life and that this association persisted even after controlling for education, income and HIV risk behavior.¹⁶ Wenger and colleagues asked patients if they would prefer life-extending care or care focused on comfort and found that although 30% stated that they would definitely prefer to extend life, almost 25% stated they would definitely prefer to focus on relieving discomfort even if it meant not living as long.¹ While it may be useful for clinicians to be aware of these results, there is such diversity of preferences for patients with HIV infection as to make patient-clinician communication of utmost importance.

A number of review articles and books provide clinicians with advice about how to communicate with patients and their significant others concerning the delivery of bad news^17-20 and palliative medicine.²¹ Although these reviews provide valuable insights, they tend to focus on the delivery of bad news. Communication about end-of-life care with patients suffering a potentially lifethreatening illness such as HIV infection or AIDS includes a spectrum of communication about prognosis, treatment options, goals of therapy, values, and treatment preferences.²² Clinicians caring for patients with chronic and life-threatening diseases need to learn how to discuss endof-life care with their patients.

In the acute care settings, these conversations may concern patients incapable of participating in these discussions because of the severity of their illness, and often clinicians must communicate with family members and friends of the patient.^23-25 The acute care setting frequently involves complicated, confusing, and even discordant data that can be overwhelming to patients’ significant others and make them more dependent on the health care team for assistance with decisionmaking.²⁶ For example, a critically ill patient may have improvement in one organ system while showing deterioration in several others. There are also more likely to be discordant views about the appropriate treatment among hospital team members, consultants, and primary care providers as well as the significant others.²⁶ Finally, patients with HIV infection may be at higher risk of having estranged family members who are unaware of their HIV infection, let alone their treatment preferences. Injection drug users commonly have fractured social situations and poor social support that can also complicate these discussions. Therefore, clinicians practicing in these settings and caring for patients with HIV infection must be skilled at communicating with patients, extended family members, and significant others in the lives of their patients.

In the 1980s, many prominent investigators believed that advance directives would allow patients to inform their health care providers what kind of care they would want if they became too sick to speak for themselves.^27-29 Advance directives, including the living will and durable power of attorney for health care, were promoted as a way to improve end-of-life care. (See Chapter 18: Legal and Financial Issues.) A logical extension of this argument is that advance directives could diminish the need for clinicians to discuss end-of-life care with patients and their significant others. However, numerous studies have suggested that advance directives do not significantly affect the aggressiveness or costs of subsequent care^{5, 7, 30} and do not change end-of-life decisionmaking in hospital settings.^31-33 These studies have led many to lose faith in advance directives.^34-36 However, despite a general disillusionment with the documents, they can play an important role in some circumstances. For example, patients who would want their surrogate decisionmaker to be a same-sex partner or friend rather than their legal next of kin should complete a durable power of attorney for health care. However, it is important that clinicians inform patients that completion of the document is only the first step; patients must also discuss their values and their treatment preferences with this person. Furthermore, recent evidence shows that the most important factor associated with whether patients with HIV infection have an advance directive is whether their primary care provider has discussed advance directives with them.¹ These data suggest that providers play an important role in increasing advance directive completion.

Advance care planning, defined more broadly as an ongoing discussion among patients, surrogate decisionmakers, and providers, may be a more effective means of allowing patients’ wishes to be followed if they become too ill to speak for themselves. Although to date there are no data demonstrating the effectiveness of advance care planning, such communication is an important part of good quality medical care. Advance care planning incorporates a broad set of goals and involves having the communication discussed in this chapter.

There are limited data examining the quality of communication about palliative care with patients with HIV infection or AIDS. One study assessing the quality of communication suggests that patients are relatively satisfied with this communication, ¹³ but this may be due, in part, to patients’ low expectations. Furthermore, in this study 25% of patients and their primary care clinicians did not agree about whether they had discussed end-of-life care, suggesting the quality of communication may be limited.

Previous researchers have assessed the quality of patient-clinician communication with general hospitalized patients about “Do Not Resuscitate” orders.³⁷ These studies found substantial shortcomings in the communication skills of clinicians, noting that physicians spent 75% of the time talking and missed important opportunities to allow patients to discuss their personal values and goals of therapy. These investigators also showed that the majority of these physicians felt that they did a good job discussing “Do Not Resuscitate” orders, but that they had very little training about how to hold these types of discussions with patients.³⁸ In a more recent study, these same investigators examined communication between primary care physicians and outpatients about advance directives.^{39, 40} In this study, investigators again found that physicians rarely elicited information about patient goals and values, avoided discussing uncertainty, and rarely asked patients to explain why they had specific treatment preferences or what was important to them about their quality of life after treatment. There is also some data to suggest that non-physician primary care providers such as nurse practitioners or physicians’ assistants are no better than physicians at communication about end-of-life care.¹³ In summary, these data suggest that the quality of patient-clinician communication about end-of-life care is poor and unlikely to improve under our current system of health care delivery and medical education. These studies challenge us to develop better ways to teach end-of-life communication skills to clinicians in training and in practice.²⁶

The western ethical principle of patient autonomy dictates that patients should be involved in decisions about their medical care and that communication about a patient’s care should occur with the patient. However, it is important to recognize that many patients would like their significant others to be directly involved in discussions and even decisions about their care. In fact, when patients are asked for their preference in a circumstance where they could not communicate and where their advance directives differed from what their loved ones would like done, most patients stated they would rather that the wishes of their loved ones be followed.⁴¹ This study shows the importance of involving patients’ significant others in end-of-life decisionmaking. The importance of including the patients’ significant others becomes even more important when patients are from cultures that focus on the family as the decisionmaking unit. Clinicians working with patients from cultures that focus decisionmaking on the family unit must develop the skills and expertise in communicating with the entire family.⁴² (See Chapter 14: Culture and Care.)

If a patient can no longer communicate his or her wishes for medical care, the legal surrogate decisionmaker is usually identified in a hierarchical fashion. First priority usually goes to an individual named in a durable power of attorney for health care and then to family members. In most States and countries, the family members primarily responsible for decisionmaking are, in order, legal spouse, parent, adult children, and siblings. If there is more than one individual at a given level in the hierarchy, such as occurs in the family with several siblings, many States and countries require that the decision be based on group consensus. Although the law may specify a legal decisionmaker, in most cases the actual decisionmaking process occurs in a series of conferences and individual meetings with all individuals who have strong ties to the patient.⁴³ Decisionmaking is usually facilitated if all interested individuals are involved early and completely.

The health care team is made up of a number of health care professionals, including physicians, nurses, social workers, and others. Different team members may play varying roles in different settings. It is important that all team members who are directly involved in communication with patients and their significant others be aware of all communication about end-of-life care. Consensus within the team is an important step in the process of making decisions about withholding or withdrawing life-sustaining therapy regardless of whether the setting is an intensive care unit, hospital ward, or outpatient setting. Of the few legal cases brought against health care providers for end-of-life decisions, most have been initiated by disgruntled colleagues. In addition, it is important that all team members are informed about the medical situation and plan of therapy so that patients and their significant others do not receive conflicting messages from different staff members.

Acute care nurses play a pivotal role in clinician-significant other communication in the acute care settings.^44-46 Significant others rate the nurses’ skill at this communication as one of the most important clinical skills of nurses.^47-50 In a meta-analysis of studies assessing the needs of significant others who have a loved one in intensive care, 8 of the 10 needs identified relate to communication with clinicians, and the majority of these communication needs are primarily addressed by the nurses.⁴⁷ In the outpatient setting, nurses, nurse practitioners, and physicians’ assistants also may play an important role. However, there are data to suggest that nurses are not better at communication about end-of-life care than physicians ⁵¹ and, in fact, in the outpatient setting nurse practitioners and physicians’ assistant may actually not do as well as physicians in communication about end-of-life.¹³ Consequently, it is likely that nurses, nurse practitioners, and physicians’ assistants could also benefit from efforts to improve the quality of this communication.

In acute care settings, social workers often play an important role in identifying and contacting significant others, coordinating and scheduling family conferences, and keeping in contact with significant others during the hospital stay. This is a very important role in providing sensitive care and in communicating with patients’ significant others. The person filling this role should be aware of the medical prognosis and plans and be an active part of the health care team. In the outpatient setting, social workers may be the ones primarily responsible for many of these discussions with patients and consequently need to develop the same skills and expertise in this communication.

Culture and ethnicity are important factors to consider in patient-clinician communication, and cross-cultural dynamics may be especially important in discussing palliative care for patients with HIV infection. Black and Hispanic persons, women, and injection drug users are disproportionately affected by HIV infection⁵² and are at increased risk for receiving lower quality medical care.^{53, 54} They are also less likely to communicate with their primary care clinicians about end-of-life care than white homosexual or bisexual men with AIDS.^{1, 2, 55} Consequently, they represent important populations to target for improvements in the quality of communication. If this is to be done, it will be important to identify the barriers to communication unique to these patient groups and individuals. Nonwhite patients with AIDS are more likely to report that they don’t like to talk about end-of-life care and are more likely to worry that talking about death could bring death closer than white patients with AIDS.⁵⁶ Similarly, injection drug users and women with high-risk sexual partners are also more likely to worry that if they talked about death it could bring death closer.⁵⁶ Clinicians should be aware of the diversity of barriers that may exist for patients from different cultures and be open to discussing these barriers openly with patients.^{56, 57}

It is impossible to be prescriptive about the “right” time to discuss palliative and end-of-life care, except to say that we should talk about it earlier than we usually do. Oftentimes, clinicians, particularly physicians, wait until they have decided that life-sustaining treatments are no longer indicated before they initiate communication about palliative and end-of-life care with patients or their significant others. Patients and significant others may be just beginning to think about withdrawing life-sustaining treatments while clinicians are feeling increasingly frustrated at providing care they believe is no longer indicated. Alternatively, the patients and significant others may be considering withdrawal of life-sustaining treatments well before the health care team. The team members may also vary in the timing with which they believe that life-sustaining therapy should be withheld or withdrawn. In the acute care setting, nurses often come to this conclusion earlier than physicians, which can lead to extreme frustration for some nurses ^{58, 59} and interdisciplinary conflict for physicians and nurses.

A potential solution to this difficulty is to begin discussions with the health care team, patients, and significant others early in the course of a chronic illness. However, early in the course of care these discussions may focus on prognosis, goals of therapy, and the patients’ values and attitudes toward medical therapy. These early discussions may foreshadow or set the stage for subsequent discussions about transitioning to palliative care goals or about withdrawing or withholding life-sustaining treatments. These discussions can also be a way for clinicians to let patients and their significant others know that palliative care and end-of-life care are important topics that the clinician is willing to discuss.

Because discussing palliative care with patients and their significant others is an important part of providing high quality care for patients with life-threatening diseases, these discussions should be approached with the same care and planning that are given to other important medical procedures. For example, 1) time and thought should be put into the preparations needed prior to holding this discussion, 2) the location of the discussion should be planned, 3) if possible, a preliminary discussion should be held with the patient about who should be present and what will be covered during the discussion, and 4) what is likely to happen after the discussion should be anticipated. These four issues address the processes that ideally should occur before, during, and after the discussion. Table 21-1 outlines some of the steps that may facilitate good communication about palliative care and these are described in more detail below.

A common mistake that some clinicians make is to embark on a discussion about palliative care with a patient or significant others without having made the necessary preparations for the discussion. Clinicians should review what is known about the patient’s disease process including the diagnosis, prognosis, treatment options, and likely outcomes with different treatments. Clinicians should identify gaps in their knowledge by systematically reviewing this information and seek out the information they need before they find themselves in a discussion with patients or their significant others. Clinicians should also be aware of the communication that has occurred with other team members and of the plans for care established or agreed upon by any other care provider responsible for the patient’s care.

It is also important for clinicians to review what they know about the patient and their family and social support network including their relationships with one another, their attitudes toward illness, treatment, and death, and their prior reactions to information about illness and death. If, for example, there are significant others who have had strong emotional reactions to bad news, it may be helpful to mobilize the aid of a family member, friend, or staff member, such as a social worker or chaplain, who can support them through and after the discussion with the clinician.

Finally, it is useful for clinicians to consider their own feelings of grief, anxiety, or guilt before holding a discussion about palliative care with patients or significant others. This may be especially important when the clinician has known the patient or significant others for a long time, when the clinician and patient or significant other have been through a lot together, or when the clinician has some feelings of inadequacy about the patient’s condition or treatment. Acknowledging these feelings explicitly can help the clinician avoid projecting his or her own feelings or biases onto the patient or the significant others. In addition, the clinician’s own feelings of guilt or inadequacy can lead him or her to avoid the patient or significant others or to avoid talking with them about death. Reviewing these feelings by oneself or with another clinician can be the first step to becoming more comfortable discussing dying and death with a patient or significant other.^{60, 61}

An additional step in preparing for an end-of-life discussion is to plan where the discussion will take place and who will be there. Ideally, these discussions should take place in a quiet and private room where there is some assurance that people, phones, or pagers will not interrupt the discussion. It should be a room that is comfortable for all the participants without a lot of medical machinery or other distractions such as medical diagrams. All parties should be sitting at the same level around a table or chairs in a circle. It is best to avoid having a clinician sitting behind a desk with the patient and significant others in front of the desk. If the patient can participate in the discussion but is too ill to leave their hospital bed, efforts should be made to make the room comfortable for everyone present.

Before the scheduled conference about palliative care, the clinician, patient, and significant others should discuss who should be present for the conference. In addition, the clinician should make certain that all appropriate members of the staff are consulted about whether they should be present, including the medical staff, nursing staff, chaplains, and trainees who have been involved with the patient or significant others. Ideally, someone should take responsibility for scheduling the conference at a time when as many as possible can be present. It may be helpful to suggest that patients and their significant others write down any questions they have beforehand to be sure their questions are answered.

The first step in a discussion about palliative and end-of-life care is to ensure that everyone participating in the discussion has met everyone else present. For example, some staff members present for the discussion may not have met all family members or significant others. Take the time to go around the room to be sure everyone has met everyone else and knows their role either on the staff or in the patient’s life.

Introducing the issue of palliative or end-of-life care can be a crucial and difficult part of these discussions. Often, by the time these discussions occur, everyone involved knows that the discussion will focus on how to help the patient transition to palliative care goals or even to die in comfort and with dignity. But sometimes patients or their significant others may not be aware that this is a part of the clinician’s agenda. In those situations, the clinician should make the patient or significant others as comfortable as possible talking about dying and death. In these latter situations, it may be helpful to frame the discussion by saying that these are discussions that are held with all patients with HIV infection or, if appropriate, with AIDS.

Not everyone present will have the same level of understanding of the patient’s condition; thus it is often helpful to first find out what the patient and significant others understand of the patient’s situation. This can be a useful way for the clinician to determine how much information can be given, the level of detail that will be understood, and the amount of technical language that can be used. It can also be useful in some settings to ask the patient or significant others how much they want to hear on this day as a way to gauge how much information and detail to give. Clinicians should avoid unnecessary technical jargon and should be cautious about using technical jargon rather than saying words like “dying” or “death.” Clinicians should also be cautious about using medical detail to cover the uncomfortable message about the patient’s prognosis. However, some patients will be very familiar with technical details and will want sophisticated explanations of their condition. Therefore, it is important to assess the patient’s knowledge and desire for information.

During these discussions, it is important to discuss prognosis in an honest way that is meaningful to patients and their significant others. For example, the term “median survival” is not very meaningful to most people. In discussing prognosis, clinicians should also be honest about the degree of uncertainty in the prognosis. Finally, it is important to provide honest information about the prognosis without completely discouraging hope from those patients or families who would like to maintain their hope. This can be a difficult balancing act for clinicians, but it is a part of the art of holding these discussions. There are several specific ways that clinicians can allow patients or their significant others to maintain their hope in the face of a poor prognosis. First, the clinician can allow the patient or significant other some time to get used to a poor prognosis. In the acute care setting, sometimes this can take days; in the outpatient setting this can take weeks, months, or even years. Regardless of how much time it takes, it can be helpful to patients or significant others if they are allowed to make this transition at their own pace. Second, the clinician can help the patient or significant other redirect their hope and move them from a hope for recovery to hope for other things such as quality of life in the time that remains, some quality time together, achieving a particular goal, or a comfortable death without pain or discomfort and with as much dignity and meaning as possible.

An important goal of palliative care discussions is to align the clinicians’ and the patient’s or significant other’s views of what is happening to the patient. The discussions about palliative care that are most difficult are ones in which the patient’s or significant others’ views and the clinicians’ views are dramatically different. Making the effort to discover these differences and working to minimize them can be time-consuming, but it is usually time well spent as it can greatly facilitate decisions about palliative care. This does not mean that clinicians should convince the patient or significant other of the clinicians’ views, but rather identify the source of the differences and work toward compromise.

It is extremely important in a discussion about palliative care that the patient and/or their significant others understand that if the decision is made to withhold or withdraw a particular treatment, the clinicians themselves are not withdrawing from caring for the patient. While this may seem obvious to some clinicians, it should be stated explicitly to patients and families to avoid any misunderstanding.

After discussing prognosis and treatment options and the patient’s or significant other’s level of understanding, it is important to spend some time exploring and listening to the patient’s and/or significant others’ reactions to what was discussed. Clinicians should understand that patients and significant others will react to their perception of what was said and that they may not react in the way the clinician expects. There are several useful techniques that clinicians can use to explore patients’ or significant others’ reactions. First, it can be helpful to repeat what patients or significant others have said as a way to show that the clinician has heard them and test the clinician’s understanding. This can be particularly useful when the clinician and the patient or significant other have different views of what is happening or what should happen. Second, it is important to acknowledge emotions that come up in these discussions. Whether the emotion is anger, anxiety, guilt, or sadness, it is useful for the clinician to acknowledge the emotion in a way that allows the person with the emotion to talk about their feelings. In acknowledging such emotions, it can be useful for the clinician to use reflection to show empathy and to encourage discussion about the emotion. For example, a clinician can say “it seems to me that you are very angry about the care you have received, can you tell me why that is?” In this way, the clinician can show empathy for a patient and allow that patient to talk about their feelings. Finally, another technique clinicians can use in these discussions is to tolerate silences. Sometimes, it is after what seems like a long silence that patients or significant others will ask a particularly difficult question or express a difficult emotion.

There are some unique features about HIV/AIDS that warrant additional mention. First, the demographics of the HIV epidemic requires that clinicians caring for these patients have skills and experience in discussing palliative care with young patients, in cross-cultural circumstances, and with patients who do not have intact social support systems. If clinicians see a large proportion of patients from a specific culture, ethnicity, or religion, it behooves them to understand some of the cross-cultural issues that may arise around palliative care and end-of-life care for those patients. It is also important not to assume that a patients’ race, ethnicity, or religion necessarily defines their attitudes toward death or the disclosure of prognostic information. In addition, it may not be possible for clinicians to be aware of the cultural attitudes concerning death for all cultures from which their patients may come. Therefore, a series of open-ended questions may help clinicians explore these attitudes in order to provide culturally-appropriate care. An example of some of questions that might be helpful are listed in Table 21-2 from a recent review article⁶⁵ and adapted from an article by Kleinman and colleagues.⁶⁴ If patients lack social support, social services and social workers may be a vital component of the palliative care team. Finally, as noted above, the durable power of attorney may be of particular importance for patients with AIDS who may be more likely to wish to have a same sex partner or a friend make decisions for them if they are unable rather than have this task be the responsibility of their legal next of kin.

Second, the dramatic improvements in survival due to advances in anti-retroviral therapy over the 1990’s requires clinicians to address palliative care with patients who may have varied and diverse experiences of the AIDS epidemic. Some patients may have confronted having a terminal disease only to respond to anti-retroviral therapy and come to believe their disease could be cured or controlled and then have to readdress the terminal nature of their disease. Other patients may have always viewed HIV/AIDS as a curable or controllable illness and may have disillusionment with the medical system if their disease progresses or may blame themselves for lapses in adherence with their treatments. Some patients may have friends and family who are responding well to anti-retroviral therapy at the same time that their own anti-retroviral therapy is failing them. These variations may each require different approaches on the part of the clinician caring for these patients. Many patients will benefit from open and direct communication about their concerns and worries.

Finally, many patients with HIV/AIDS have a history of drug addiction and this history may cause them great concern regarding the adequacy of pain assessment and management as they approach the end-of-life.⁶⁶ A drug addiction history may complicate pain management in these patients, but in general patients should be reassured that their history of drug addiction will not prevent adequate treatment of pain and other symptoms during the terminal phase of their illness. (See Chapter 11: Substance Use Problems.)

Before finishing a discussion about end-of-life care, there are several steps that clinicians should make. First, it is important that clinicians make recommendations during the discussion. With the increasing emphasis on patient autonomy and surrogate decisionmaking, there may be a tendency for some clinicians to describe the treatment options to a patient or significant other but to then feel like they should not make a recommendation. On the contrary, it is important that clinicians offer their expertise to patients and their significant others, and part of offering their expertise is making a recommendation.⁶² This is especially important in discussions with significant others concerning withholding or withdrawing life support. It is a disservice to leave a significant other feeling like they were alone in making the decision to “pull the plug” on a loved one in situations where ongoing life support therapy is unlikely to provide significant benefit.

Clinicians should summarize the major points and ask patients and significant others if there are any questions. This is a good time to tolerate silence, as it may take some time for the uncomfortable questions to surface.

Finally, before completing a discussion about end-of-life care, clinicians should ensure that there is an adequate follow-up plan. This often means a plan for when the clinician will meet with the patient or significant other again and a way for the patient or significant others to reach the clinician if questions arise before the next meeting.

Discomfort discussing death is universal. This is not a problem unique to physicians, nurses, social workers, or other health care providers, but has its roots in our society’s denial of dying and death. Medical schools and nursing schools have only recently begun to teach students how to help patients and families through the dying process and still do so in a limited way.⁶³ Major medical textbooks have had scant information about end-of-life care.⁴² For all these reasons, it is not surprising that many clinicians have difficulty talking with their patients and others about palliative or end-of-life care. Furthermore, the medical culture is one of using technology to save lives, and for many clinicians discussing dying and death is even more difficult in this technologic, aggressive care era. To compound this difficulty, clinicians can also feel that a patient’s death will reflect poorly on their skills as a clinician and represents a failure on their part to save or extend the patient’s life.

It is important for clinicians to recognize the difficulty they have discussing dying and death. If clinicians acknowledge this difficulty, they can work to minimize some of the common effects that such discomfort can cause. For example, discomfort discussing death may cause clinicians to give mixed messages about a patient’s prognosis or to use euphemisms for dying and death or may even cause clinicians to avoid speaking with a patient or their significant others. Recognizing this discomfort and being willing to confront it is the first step in overcoming these barriers to effective communication about dying and death with patients and their significant others. Resources exist to help clinicians address these issues.^{60, 61}

Discussing palliative care, dying, and death with patients and their significant others is an extremely important part of providing good quality care for patients with a chronic, lifethreatening disease such as HIV infection or AIDS. While there is little empiric research to guide clinicians in determining the right time or the most effective way to have these conversations, there is a developing experience and an increasing emphasis on making this an important part of the care we provide and an important part of training for students. Much like other clinical skills, providing sensitive and effective communication about palliative care requires training and practice as well as planning and preparation. While different clinicians may have varying approaches and should change their approaches to match the needs of patients and their families, this chapter reviews some of the fundamental components of discussing palliative care and end-of-life care that should be part of the care of most patients with potentially lifethreatening illnesses.

1. Wenger NS, Kanouse DE, Collins RL, et al. End-of-life discussions and preferences among persons with HIV. JAMA, 285:2880-7, 2001.
2. Haas JS, Weissman JS, Cleary PD, et al. Discussion of preferences for life-sustaining care by persons with AIDS. Arch Intern Med, 153:1241-8, 1991.
3. Virmani J, Schneiderman LJ, Kaplan RM. Relationship of advance directives to physician-patient communication. Arch Intern Med, 154:909-13, 1994.
4. Heffner JE, Fahy B, Hilling L, Barbieri C. Attitudes regarding advance directives among patients in pulmonary rehabilitation. Am J Respiratory Critical Care Med, 154:1735-40, 1996.
5. Schneiderman LJ, Kronick R, Kaplan RM, Anderson JP, Langer RD. Effects of offering advance directives on medical treatment and costs. Ann Intern Med, 117:599-606, 1992.
6. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA, 274:1591-8, 1996.
7. Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med, 324:882-8, 1991.
8. Carpenter CCJ, Fischl MA, Hammer SM, et al. Antiretroviral therapy for HIV infection: Recommendations of an international panel. JAMA, 276:146-54, 1996.
9. Palella FJ, Delaney KM, Moorman AC, et al. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. N Engl J Med, 338:853-60, 1998.
10. Selwyn PA, Arnold R. From fate to tragedy: the changing meanings of life, death, and AIDS. Ann Intern Med, 129:899-902, 1998.
11. Steinbrook R, Lo B, Moulton J, et al. Preferences of homosexual men with AIDS for life-sustaining treatment. N Engl J Med, 314:457-60, 1986.
12. Teno J, Fleishman J, Borck DW, Mor V. The use of formal prior directives among patients with HIV-related diseases. J Gen Intern Med, 5:490-4, 1990.
13. Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient-clinician communication about end-of-life care: a study of patients with AIDS and their primary care clinicians. AIDS, 13:1123-31, 1999.
14. Teno JM, Mor V, Fleisman J. Preferences of HIV-infected patients for aggressive versus palliative care (letter). N Engl J Med, 324:1140, 1991.
15. Singer PA, Thiel EC, Flanagan W, Naylor CD. The HIV-specific advance directive. J Gen Intern Med, 12:729-35, 1997.
16. Mouton C, Teno JM, Mor V, Piette J. Communication of preferences for care among human immunodeficiency virus-infected patients. Arch Family Med, 6:342-7, 1997.
17. Campbell ML. Breaking bad news to patients. JAMA, 271:1052, 1994.
18. Buckman R. Breaking bad news: why is it still so difficult? Br Med J, 288:1697-9, 1984.
19. Buckman R. How to Break Bad News. Baltimore: Johns Hopkins University Press, 1992.
20. Quill TE, Townsend P. Bad news: delivery, dialogue, and dilemmas. Arch Intern Med, 151:463-8, 1991.
21. Lo B, Quill T, Tulsky JA, for the ACP-ASIM End-of-Life Care Consensus Panel. Discussing palliative care with patients. Ann Intern Med, 130:744-9, 1999.
22. Wenrich MD, Curtis JR, Shannon SE, Carline JD, Ambrozy DM, Ramsey PG. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med, 161:868-74, 2001.
23. Faber-Langendoen K. A multi-institutional study of care given to patients dying in hospitals. Ethical practices and implications. Arch Intern Med, 156:2130-6, 1996.
24. Smedira NG, Evans BH, Grais LS, et al. Withholding and withdrawal of life support from the critically ill. N Engl J Med, 322:309-15, 1990.
25. Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med, 155:15-20, 1997.
26. Danis M, Federman D, Fins JJ, et al. Incorporating palliative care into critical care education: principles, challenges, and opportunities. Crit Care Med, 27:2005-13, 1999.
27. Singer PA, Siegler M. Advancing the cause of advance directives. Arch Intern Med, 152:22-4, 1992.
28. Emanuel LL, Emanuel EJ. The medical directive. JAMA, 261:3288-93, 1989.
29. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care—a case for greater use. N Engl J Med, 324:889-95, 1991.
30. Danis M, Mutran E, Garrett JM. A prospective study of the impact of patient preferences on life-sustaining treatment and hospital cost. Crit Care Med, 24:1811-17, 1996.
31. Teno JM, Lynn J, Connors AFJ, et al. The illusion of end-of-life savings with advance directives. J Am Geriatric Soc, 45:513-18, 1997.
32. Teno JM, Lynn J, Wegner N, et al. Advance directives for seriously ill hospitalized patients:Effectiveness with the Patient Self-Determination Act and the SUPPORT Intervention. J Am Geriatric Soc, 45:500-7, 1997.
33. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? J Am Geriatric Soc, 45:508-12, 1997.
34. Block JA. Living wills are overrated. Chest, 104:1645-6, 1993.
35. Dresser R. Confronting the “near irrelevance” of advance directives. J Clin Ethics, 5:55-56, 1994.
36. Tonelli MR. Pulling the plug on living wills: a critical analysis of advance directives. Chest, 110:816-22, 1996.
37. Tulsky JA, Chesney MA, Lo B. How do medical residents discuss resuscitation with patients? J Gen Intern Med, 10:436-42, 1995.
38. Tulsky JA, Chesney MA, Lo B. See one, do one, teach one? House staff experience discussing do-not-resuscitate orders. Arch Intern Med, 156:1285-9, 1996.
39. Tulsky JA, Fischer GS, Rose MR, Arnold RM. Opening the black box: how do physicians communicate about advance directives? Ann Intern Med, 129:441-9, 1998.
40. Fischer GS, Tulsky JA, Rose MR, Siminoff LA, Arnold RM. Patient knowledge and physician predictions of treatment preferences after discussion of advance directives. J Gen Intern Med, 7:447-54, 1998.
41. Hofmann JC, Wenger NS, Davis RB, et al. Patients’ preferences for communication with physicians about end-of-life decisions. Ann Intern Med, 127:1-12, 1997.
42. Rabow MW, McPhee SJ, Fair JM, Hardie GE. A failing grade for end-of-life content in textbooks: What is to be done? J Palliative Med, 2:153-5, 1999.
43. Swigart V, Lidz C, Butterworth V, Arnold R. Letting go: family willingness to forgo life support. Heart Lung, 25:483-94, 1996.
44. Jamerson PA, Scheibmeir M, Bott MJ, Crighton F, Hinton RH, Cobb AK. The experiences of families with a relative in the intensive care unit. Heart Lung, 25:467-74, 1996.
45. McClement SE, Desgner LF. Expert nursing behaviors in care of the dying adult in the intensive care unit. Heart Lung, 24:408-19, 1995.
46. Hampe SO. Needs of the grieving spouse in a hospital setting. Nursing Res, 24:113-20, 1975.
47. Hickey M. What are the needs of families of critically ill patients? A review of the literature since 1976. Heart Lung, 19:401-15, 1990.
48. Daley L. The perceived immediate needs of families with relatives in the intensive care setting. Heart Lung, 13:231-7, 1984.
49. Molter NC. Needs of relatives of critically ill patients: a descriptive study. Heart Lung, 8:332-9, 1979.
50. Rodgers CD. Needs of relatives of cardiac surgery patients during the critical care phase. Focus Crit Care, 10:50-5, 1983.
51. Maguire PA, Faulkner A. Helping cancer patients disclose their concerns. Eur J Cancer, 32A:78-81, 1996.
52. Centers for Disease Control and Prevention. Update: Trends in AIDS incidence, deaths, and prevalence — United States, 1996. MMWR, 46:165-73, 1997.
53. Bastian L, Bennett CL, Adams J, Waskin H, Divine G, Edlin BR. Differences between men and women with HIV-related Pneumocystis carinii pneumonia: experience from 3,070 cases in New York City in 1987. J Acquired Immune Deficiency Syndrome, 6:617-23, 1993.
54. Horner RD, Bennett CL, Achenbach C, et al. Predictors of resource utilization for hospitalized patients with Pneumocystis carinii pneumonia (PCP): a summary of effects from the multi-city study of quality of PCP care. J Acquired Immune Deficiency Syndrome Human Retrovirol, 12:379-85, 1996.
55. Teno JM, Lynn J, Phillips RS, et al. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? J Clin Ethics, 5:23-30, 1994.
56. Curtis JR, Patrick DL, Caldwell E, Collier AC. Why don’t patients with AIDS and their clinicians talk about end-of-life care? Barriers to communication for patients with AIDS and their primary care clinicians. Arch Intern Med, 160:1597-601, 2000.
57. Curtis JR, Patrick DL. Barriers to communication about end-of-life care in AIDS patients. J Gen Intern Med, 12:736-41, 1997.
58. Asch DA. The role of critical care nurses in euthanasia and assisted suicide. N Engl J Med, 334:1374-9, 1996.
59. Asch DA, Shea JA, Jedrziewski MK, Bosk CL. The limits of suffering: critical care nurses’ views of hospital care at the end of life. Social Sci Med, 45:1661-8, 1997.
60. Viles L. Death and the practitioner. Respiratory Care, 45:1513-24, 2000.
61. Block SD. Helping the clinician cope with death in the ICU. In Curtis JR, Rubenfeld GD, eds. Managing Death in the Intensive Care Unit: The Transition from Cure to Comfort. New York, NY: Oxford University Press, 2000.
62. Quill TE, Brody H. Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann Intern Med, 25:763-9, 1996.
63. Billings JA, Block S. Palliative care in undergraduate medical education: status report and future directions. JAMA, 278:733-8, 1997.
64. Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research. Ann Intern Med, 88:251-8, 1978.
65. Back AL, Curtis JR. Communicating bad news. Western J Med 2002, in press.
66. Curtis JR, Wenrich MD, Carline JD, Shannon SE, Ambrozy DM, Ramsey PG. Patients’ perspectives on physicians’ skill at end-of-life care: Differences between patients with COPD, cancer, and AIDS. Chest 2002, in press.