This chapter discusses medical care at the end-of-life, and is organized into four sections, as follows:

• Dying in the Era of HAART
• Preparing Patients and Families for Imminent Death
• Clinical Management of Imminently Dying Patients
• After-Death Care

In the early days of the HIV epidemic, hospice referrals tended to follow a typical disease trajectory. A patient’s clinical decline was most often marked by multiple hospitalizations, extensive muscle wasting and weight loss, desire to stop restorative therapies, and/or fatigue and resulting inability to cope with activities of daily living and problem-solving. Now, depending upon the patient’s comorbidities and ability to adhere to combination therapies, there are multiple trajectories for endstage HIV disease. Patients with active illicit substance use who are unable to adhere to treatment, for example, may have the course of illness complicated by recurrent skin abscesses, multiple episodes of endocarditis, and lack of medical follow-up resulting in antibiotic resistance and death from sepsis. These patients may also experience infections such as mycobactierium avium complex (MAC), cryptococcal meningitis and pneumocystis carinii pneumonia (PCP) as causes of death. For other patients, newer treatments may prolong survival time without much illness. In these cases, the cause of death has shifted from opportunistic infections to end-stage organ failure or other medical complications found with any chronic disease.

Prognostication based upon a combination of signs and symptoms is crucial in determining the most appropriate clinical management strategy to alleviate suffering in persons near the end-of-life. In the U.S., for hospice programs to accept reimbursement from Medicare, patients must have a prognosis of six months or less if the disease were to run its normal course. Decisions to withdraw chronic therapies and introduce other treatments that might have been avoided earlier in the course of illness, such as steroids, must be based upon a reasonable assessment of the patient’s life expectancy and goals.

Prognostication of time until death in HIV/AIDS is difficult. This is particularly true in young people because their basic cardiovascular health can sustain life longer than is possible in an older person with the same symptoms. Physicians tend to make overoptimistic prognostic predictions, particularly if they have had a long relationship with the patient.^1,2 Prior to the use of HAART, the National Hospice Organization developed guidelines for physicians desiring to refer AIDS patients for hospice services.³ These are listed in Table 24-1.

With widespread use of HAART, predicting life expectancy is now more complex. Recent studies of patients with access to triple drug therapy suggest that disease progression to AIDS or death may be associated with timing of initial antiretroviral therapy.^{4, 5, 6} A recent Canadian study found that those starting therapy with a CD4 cell count lower than 200 cells/mm³ were three times more likely to die than those treated earlier in their course. The crude mortality rate for patients with access to HAART early in their trajectory (after 1997) is 6.7% at 28 months, much different from the statistic in the early epidemic.⁷ Viral load as a prognostic factor does not seem as important when patients have access to treatment. Previous studies may simply reflect that these patients were not treated soon enough to rescue a failing immune system.

Despite the development of multiple resistant strains, patients who are able to adhere to therapy seem to be living longer. Providers caring for people with long treatment histories often become frustrated with the lack of drug choices, but good supportive care can allow a patient to live until the next therapy is released. Liver failure, malignancies, and cardiovascular events are the issues facing patients with advanced disease; providers now need to be familiar with the palliative aspects of managing these problems.

In addition, providers must continually address the risks and benefits of continued antiretroviral therapy as patients approach the end-of-life. Just as patients may benefit from ongoing HAART therapy even in the face of resistant virus and declining immune function, there also may come a point where continued therapy will yield little benefit and the patient’s quality of life may suffer due to medication toxicities. Providers need to be as familiar with the issues involved in stopping HAART as they are with the criteria for initiating HAART in treatment-eligible patients. HAART is also by definition future-oriented therapy, since the results are not expected in the short term but rather are seen in longer-term survival. This may confuse decisionmaking related to end-of-life care planning. Therefore, it is important for clinicians to work closely with patients through the complex decisionmaking that now surrounds HIV treatment in late-stage disease.

These issues have made end-stage HIV/AIDS more similar to other chronic diseases. Research must be pursued regarding what “end-stage” actually looks like to document the prognostic indicators and symptom management that can be useful. Without concrete knowledge, it is difficult to emotionally support patients near the end-of-life and providers run the risk of again not recognizing this disease stage. Early recognition is absolutely critical for the kind of planning and closure patients need before death.

Patients and providers in the era of HAART may be lulled into thinking that HIV/AIDS has been cured, without noting the larger picture that HIV/AIDS remains a fatal illness. If this perspective is lost there is danger of reacting to every decline as something that can and must be “fixed.” When a person becomes acutely ill, curative interventions such as ventilatory support and cardiac pressors are appropriate. But for those who are in poor nutritional condition or who have underlying liver or renal disease, what initially presents as a curable illness may turn into serial organ failure.

The provider must recognize how fear of death impacts management decisions (both by family and by provider). For some cultures it is imperative to continue what may even appear to be futile therapy (See Chapter 14: Culture and Care). Although it is difficult and time-consuming to have repetitious conversations with loved ones about a realistic interpretation of the clinical picture, it is as much a part of medical management as writing orders for intravenous fluids.

A patient’s family may be friends, other residents of a shelter, or even health/social workers. Having talked with patients and their support persons at a less emotional time certainly facilitates the process for health care providers, but confronting a possible death is not easy even when the events that attend it have been anticipated. Another complication, particularly in homeless or disenfranchised populations, is underlying mental illness which requires additional communication and clinical effort. (See Chapter 21: Patient-Clinician Communication and Chapter 10: Psychiatric Problems.)

In the face of even the bleakest situation it is important to not insinuate that there is nothing more to be done. The patient and family should, at these times, be helped to redefine hopes or goals. Hope is an intangible quality that allows us to overlook current discomforts to achieve a desired endpoint. As people near the end-of-life they turn from ‘doing’ to ‘being’ and may even experience a surge of positive feeling for family, self, or others.¹⁰

When people are known to be dying, goals can be adjusted to fit the time they have left. For example, the new goal may be to live until an anniversary such as a birthday (within weeks) or a specific holiday. This could mean celebrating that event sooner to include the dying person (for example, holding a birthday party this week rather than trying to make it to the next month). Nature, poetry, and music may take on new meaning and can sustain one near the end-of-life as long as symptoms are controlled.

Perhaps the most helpful first step in preparing patients and families for imminent death is to elicit their concerns. It may be necessary to precede this discussion with a check on patient and/or family member understanding of the clinical situation. (See Chapter 21: Patient-Clinician Communication and Chapter 22: Facilitating the Transition to Home-Based and Hospice Care.) Asking patients and family members for their assessment of the clinical situation can be useful in starting a discussion about care for imminent death. Straightforward, open-ended questions are helpful, such as “What are your biggest concerns now?” In addition, it is often useful to specifically probe the following important domains:¹¹

• Optimizing physical comfort
• Maintaining a sense of continuity with one’s self
• Maintaining and enhancing relationships
• Making meaning of one’s life and death
• Achieving a sense of control
• Confronting and preparing for death

Table 24-2 offers useful questions to help health care providers discuss these domains with patients and their family members.

Neglect of problems in these domains can lead to depression and difficulty adjusting to the situation for both the patient and family members. The empirical demonstration of the importance of paying attention to these domains is just beginning.¹²

In addition to assessing the clinical situation, the clinician must also become familiar with patient and family concerns in order to discuss goals of care and develop a plan to meet them. The discussion of goals of care is an important step that should precede discussion of “Do Not Resuscitate” orders, and this discussion should address the following issues:

• Physical symptoms, such as pain or dyspnea
• Psychological issues, such as depression or anxiety
• Social issues, such as family coping
• Practical logistics, including expected place of death
• Spiritual or existential issues, such as chaplain support or sense of accomplishment in life
• Special goals for life closure, such as family quarrels to resolve

It is important to understand how patients and family members balance quality of life with length of life. Patients and family members should be informed that a peaceful death can often be achieved with medical care that is not intrusive. Family members should further understand that their involvement in care is critical and that there are specific roles that they may play (e.g. physical care and medication administration; helping a patient with leaving a legacy; orchestrating visits from friends; helping with goodbye telephone calls; or, simply being present).

Table 24-3 presents information to help health care providers address some of the common concerns for family members of imminently dying patients.

Discussions about “Do Not Resuscitate (DNR)” orders are best set into the larger context of the care plan. Once patient and family understand what medical care will provide, and how they can contribute to care, DNR orders are much less likely to become the focal point for a struggle around how to ensure that a patient is being cared for.

Making sense of a life is not something that a clinician can do for a patient, but clinicians can facilitate or encourage life review activities for patients and their families. These activities can include the following:

• Telling and sharing stories—events that were important, funny, worth remembering; storytelling can be audiotaped or videotaped for a more permanent kind of legacy.
• Deciding what to do with one’s things—giving a favorite sweater to a friend, or a treasured stamp collection to a nephew.
• Planning the patient’s memorial service—music, readings, people who will speak, someone to preside over the service, whether to have a religious service or non-denominational service.

Some clinicians use a mnemonic of five important conversations to complete for a peaceful death. These five items themselves lack the context and richness of a life, but they are helpful as brief reminders of the kinds of issues that patients may want to talk about with important people before death.

• “Thank you”
• “I forgive you”
• “Please forgive me”
• “I love you”
• “Goodbye”

Finally, most patients recognize some transcendent dimension to life, and addressing spiritual issues can be critical near death. It is helpful to remember that spirituality differs from religion; spirituality refers to an individual’s relationship with the transcendent, whereas religion is a set of beliefs, practices, and language that characterize a community searching for transcendent meaning in a particular way. Even though many patients will feel alienated from particular religions, they may yet have a spirituality that can help them make sense of their life and their death. Psychosocial clinicians and chaplains with experience in end-of-life care can be particularly helpful if they are available.

It is important that the family and patient understand normal landmarks in the dying process and overcome common misperceptions regarding imminent death. One such misperception is the belief that lack of appetite and diminished oral intake are causing profound disability and that fluid and nutrition are required. The normal dying process includes the following changes:

• Loss of appetite
• Decreased oral fluid intake, and decreased thirst
• Increasing weakness and/or fatigue
• Decreasing blood perfusion, including decreased urine output, peripheral cyanosis and cool extremities
• Neurologic dysfunction, including delirium, lethargy, and coma, and changes in respiratory patterns
• Loss of ability to close eyes
• Noisy breathing as pharyngeal muscles relax

In particular, neurologic dysfunction can sometimes result in terminal delirium which can include a mounting syndrome of confusion, hallucinations, delirium, myoclonic jerks, and seizures prior to death. Recognized early, this can be treated with neuroleptics such as haloperidol or chlorpromazine. For more information see Chapter 10: Psychiatric Problems.

When death occurs, the clinical signs include the following:

• Absence of heartbeat and respirations
• Fixed pupils
• Skin color turns to a waxen pallor and extremities may darken
• Body temperature drops
• Muscles and sphincters relax, sometimes resulting in release of stool or urine

Preparation, which can involve the family, should include the following:

• Creating a peaceful environment to the patient’s liking
• Preparing instructions about whom to call (usually not 911) when death occurs
• Taking time to witness what is happening
• Creating or using rituals that can help mark the occasion in a respectful way

When death occurs, families should be encouraged to take whatever time they need to feel what has happened, and say their goodbyes. There is no need to rush the body to a funeral home, and some families want to stay with the body for a period of time after death.

Certain symptoms, some of which are covered elsewhere in this book, are especially common at the very end-of-life. Table 24-4 presents common symptoms and ways to manage them, to make patients more comfortable in their last hours of life.

In every culture, giving nourishment is seen as an act of caring as well as a method for improving health. As a person approaches death, eating and drinking become more difficult as one must have adequate strength to chew and to maintain an upright position. The palliative care team must find other ways for the family to offer support and care without forcing a dying person to take in more substance than they can handle. As the energy requirements diminish, forcing fluids in particular may cause more difficulty than withholding liquids might.

Excess fluid tends to localize in the pharynx causing a gurgling sound or “death rattle,” which can be distressing to families. Fluids also accumulate in the lungs, the abdominal cavity, and the lower extremities. As the activity level of the patient decreases, this excess fluid will be reabsorbed by the patient, making oral intake of fluids less crucial.

The American Academy of Hospice and Palliative Medicine (AAHPM), the professional organization for physicians and other direct care providers in the field of palliative care, has issued a Statement on the Use of Nutrition and Hydration which recognizes dying as a natural process. It recognizes that clinical judgement and skill are necessary to determine when interventions regarding hydration and nutrition might be appropriate. The statement reads, in part, as follows:

In instances like fatal pneumocystis carinii pneumonia, mechanical ventilation may be withdrawn in order to discontinue futile and invasive medical treatment. (See Chapter 6: Pulmonary Symptoms.) These decisions are complex and involve ethical principles of withdrawing life-sustaining treatments that are well established.^14,15 (See Chapter 17: Ethical Issues.) In particular, it is important that clinicians establish with the family and, if possible, the patient, that the goal of withdrawing ventilator support is to remove a treatment that is no longer desired or does not provide comfort to the patient. Clinicians need to work to develop a consensus among the health care team in order to withdraw ventilatory support; it is seldom an emergency decision, and time should be taken to resolve disagreements and concerns among the team and family. This procedure requires informed consent discussions, especially to inform family members that patients may not die immediately after ventilation is withdrawn.

A protocol developed by experienced critical care physicians appears in Table 24-5.

It is important to respect the patient’s and family’s cultural, religious, and spiritual beliefs throughout the course of care up to and including the time of death and beyond. Although 60% of people die in institutions in the U.S., most surveys show that most people prefer death in familiar surroundings. Every attempt should be made to allow the person to die where they feel most comfortable. Even in a clinical setting, being able to be with the person who is dying is very comforting to most family members. Every attempt should be made to remove unnecessary monitors such as pulse oximetry readers, intravenous lines, cardiac monitors, and even ventilators when possible; see guidelines above for removing ventilatory support.

Those in attendance may appreciate a pastoral care provider who can lead them in prayer, or they may want to sing and to wait for the ‘spirit’ to leave the room. Ritual cleansing, bathing with oils, or other cultural practices should be encouraged. Even after the family has gone and the body has been removed, it is advisable to leave a silk or plastic flower on the bed to allow hospital workers the opportunity to say goodbye and to grieve this death before they must go on to the care of another patient. Creating a memorial section in the intensive care unit or a busy ward gives health care workers permission to gain closure, especially when they are in an area where there are multiple deaths. (See Chapter 20: Care for the Caregiver.)

The AIDS Quilt is a visible remembrance of the lives of individuals who have died with AIDS and serves as a permanent record of lives lost to HIV/AIDS. The making of each panel is, in itself, a concrete way for loved ones and family to resolve their own grief. Scrapbooks, video tapes, poetry and other creative efforts can also help those who mourn to express these feelings and to link children or other family members who want a tangible means of remembering the deceased. Other traditions of remembrance include planting a tree, building a shrine, or placing a tomb marker.

Mourning one death is complex and can extend for months or years. (See Chapter 16: Grief and Bereavement.) During the AIDS epidemic, many gay men have suffered the deaths of ten or more friends, minority mothers may have lost several children, and inner-city dwellers have often lost loved ones to violence and disease.¹⁶ When there are multiple losses to grieve soon after one another, the individual does not have adequate time to complete the usual bereavement tasks. People can develop a protective response that may cause them to shut down emotionally and to be unable to experience significant feelings of either a positive or negative nature.^17,18,19 Clinically, this may look like a post-traumatic stress disorder and usually requires professional help for resolution. (See Chapter 10: Psychiatric Problems.)

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