Chapter 12
Palliative And End-Of-Life Care

Carla S. Alexander, MD

I. Introduction  TOP

This chapter is meant to provide ideas for coping with symptoms that impact quality of life throughout HIV disease and to prepare for issues faced near the end of life. Aggressive palliative care anticipates, prevents, and relieves suffering on emotional and spiritual levels as well as the physical. Because of gaps in traditional medical education related to end-of-life issues (Weissman, 1998), information in this chapter focuses on care near the end of life which is consistent with the new definition of palliative care (Hanson, 1997). Much documentation needs to be done in palliative care because the practice comes from an oral tradition. The challenge to readers is to share successes and failures in order to expand the literature especially for those living in countries with fewer resources.

Hospice, an early form of palliative care, developed in London during the late 1960’s when Dame Cicely Saunders proposed using an interdisciplinary team to focus on the “relief of suffering” rather than simply on long-term survival for persons living with advanced cancer. This care was ideally delivered in the home and focused on relieving physical symptoms that might impede successful psychosocial and spiritual life closure prior to death (Saunders, 1966). In 1980, the World Health Organization defined palliative care as:

“The active total care of patients whose disease is not responsive to curative treatment. [It] . . .affirms life and regards dying as a normal process, . . . neither hastens nor postpones death, . . . integrates the psychological and the spiritual aspects of care, . . . offers a support system to help patients live as actively as possible until death, . . . and offers a support system to help the family cope during the patient’s illness and in their own bereavement.” (Doyle, 1998)

There are many differences between patients with cancer, who eventually learn that their disease is no longer being contained by treatment, and patients with HIV/AIDS, who suffer from a more episodic illness with very difficult to predict endpoints. In HIV disease palliative care is best woven into the general fabric of care from the time of diagnosis (Bloomer, 1998; Dudgeon, 1995). A small group of HIV providers, invited by the Health Resources and Services Administration (HRSA) of the Department of Health and Human Services, which oversees the Ryan White CARE Act, have attempted to define what this care should be in HIV disease:

“. . . that care which is patient- and family-centered and optimizes quality of life by active anticipation, prevention, and treatment of suffering through respectful and trusting relationships formed with an interdisciplinary team throughout the continuum of illness: addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.” (Unpublished meeting report, HIV/AIDS Bureau, HRSA, 1999.)

As HIV disease becomes a chronic rather than terminal illness, management must be accomplished in the overall context of life (Breitbart, 1996). Good supportive care means “to be safe and not to be hurt, to be given refuge or sanctuary, to be comforted and accepted, to belong, and to give and receive love” (National Hospice Organization, 1997). Adjusting goals may be challenging for health care workers who use only a “cheerleading” approach to support. Involving the patient and her support system in decisionmaking affords her a sense of control over her disease that ultimately extends to the end of life (Fogel, 1993; Newshan, 1998). All staff must learn to value the impact of symptoms on the woman’s daily life as much as they do viral load and the CD4 cell count.

HIV disease has been associated with shame and a negative stigma (Chung, 1992; Abercrombie, 1996; Sowell, 1999) resulting in the isolation of many who are infected, especially women. Those who suffer from the disease are frequently without social support or the financial means, including health insurance, necessary for coping with their disease (Chung, 1992; Cohen, 1998; Nannis, 1997; Pergami, 1993; Sowell, 1997). As the traditional care giver, a woman may not have anyone else to care for her. She may have also suffered many personal losses leaving her emotionally drained and unable to provide care for someone else (Sarna, 1999). She must cope with knowing that she will one day be dying herself and that she must make provisions for her children and other dependents who will be left behind.

II. Quality Of Life  TOP

The overarching goal of palliative care is to relieve or reduce suffering and promote quality of life. With HIV disease, the unpredictable and episodic course of illness makes it difficult to estimate an individual’s prognosis. Use of combination therapy has decreased mortality rates by 23–90% depending on the population examined (Pezzotti, 1999; Sendi, 1999). Quality of life (QoL) alone has become an important outcome measure and providers now need to pay more attention to pain, fatigue, anorexia, and other symptoms that can be present even when the disease markers are improving (Barroso, 1999; van Servellen, 1998). Each provider must become adept at anticipating symptoms related to therapies and offering the woman a mechanism for preventing or controlling these side effects.

Despite prolonged survival, physical and spiritual distress, psychological pain, and grief remain a part of the illness (O’Neill, 1997). There does come a point in illness when quality of life becomes more important than quantity of life. The transition away from aggressive, curative care can be as difficult for members of the health care team as it is for patients and families (Finucane, 1999).

Several studies have specifically considered quality of life in women with HIV disease (Farsides, 1995; Rosenfeld, 1996; Sowell, 1997). Sowell found that social, and particularly psychological, symptoms have a major impact. Quality of life has been affected by “HIV treatment, physical symptoms, psychological well-being and [change in] role functioning.” Sarna (1999) found that problems arise in four domains: physical, psychological, social, and sexual. Another study, however, noted that financial concerns were the number one disrupter. This is followed by “worry about family,” “distress at losing others,” and “worry about progression of disease.”

Routinely measuring quality of life throughout the disease alerts health care providers to changes and stresses that may not always be obvious during a busy clinic visit. (See example of a quality of life form at www.tmg-web.com/modules.htm; Module 22.) Completing questionnaires every 3–4 mo or at the time of a clinical change may help the woman communicate with her providers. These answers can assist providers by monitoring problems and targeting interventions more specifically (Sarna, 1999). Quality of life scales have traditionally reflected functional status; for example, the Karnofsky Performance Status assigns a global ranking that reflects activity during any given day. The Medical Outcomes Study (Wu, 1997) is frequently used in the HIV population and has been shortened for easier use in the clinical setting. However, many of these scales, because they are function based, may not be as useful as the woman becomes more debilitated and approaches end of life.

In advanced disease one’s focus is often directed to psychosocial and spiritual concerns that can be addressed even while bedridden. When we are healthy, not being able to leave the bed might seem unbearable. Approaching death, priorities shift; relationships and momentary pleasures become more important. In fact, it is not unusual for people to feel that their quality of life is better during this period because they are unable to perform mundane tasks and thus more inclined to focus on personal goals. The Missoula-Vitas Quality of Life Instrument (available through Vitas Healthcare Corporation, phone (305) 350-6033) has recently been developed specifically for those with deteriorating functionality. With this form the patient notes the importance of each domain and scoring reflects how the change in each characteristic, such as symptom control and sense of well-being, affects the individual woman. It is always useful simply to ask the woman how she would rank her own quality of life and what things are most important to her at the present time.

III. Symptoms Throughout Disease  TOP

Three symptom surveys of outpatients with HIV/AIDS (Carr, 1994; Ferris, 1995; Sims, 1995) are summarized in Table 12-1. As disease advances it may not be possible to eliminate the cause of a symptom, but the woman and her family should be educated about symptom management and thus be empowered to master these symptoms.

Fatigue, pain, and difficulty with sleep are three symptoms that occur throughout the course of HIV disease (van Servellen, 1998; Whalen, 1994) and are often overlooked by providers. Patients believe they “must put up with” these problems and may avoid acknowledging them to providers. Women do not want to appear less courageous in coping with their disease or to distract the provider. Women who have a history of past or current substance abuse may fear being labeled as “drug-seeking” or may fear relapse if given pain medication. On the other hand, providers often do not inquire about these symptoms because they may not know how to manage them or feel inadequate to address them.

Dame Cicely Saunders, the founder of modern-day hospice, introduced the term “total pain” (Saunders, 1966) which is a model for how to approach all symptoms. She recognized that each complaint has a physical, emotional, and even spiritual component. If pain, or another symptom, is difficult to relieve with usual measures, it may be thatthe woman has assigned special meaning to the symptom. She may be afraid her disease is getting worse or that “it is God’s punishment.” Both of these beliefs can exacerbate any symptom. Particularly when a symptom seems difficult to control, it is useful to ask the patient: “What does the pain (or nausea or shortness of breath) mean to you?” or “Why do you think you have this symptom?”

A. IDENTIFYING AND DEFINING THE PROBLEM

Instead of a “review of systems,” it may be useful to think of a “review of symptoms” moving from the head down to the feet. All symptoms can be approached similarly (MacDonald, 1998) by asking about the character (what does it feel like); the location (including radiation to other parts of the body); what makes it worse, what makes it better; and are there any other symptoms associated. It is also useful to ask how symptoms limit or affect daily activity. Asking these questions lets the woman know that you are interested in the particulars of how this affects her life, that her perception of her daily comfort is as important to you as is her viral load.

In cancer patients with symptoms such as fatigue, it has been shown that just the act of asking and being aware of the importance of this symptom to the patient provides some relief from it. A problem often worsens when the patient tries to deal with it alone and her fear of what is causing it grows. Routinely using a checklist of symptoms such as the Memorial Symptom Assessment Scale (Portenoy, 1994b) will alert the practitioner to issues facing the patient. A review of symptoms will also alert the provider to the appearance of new symptoms that might herald progression of disease.

B. QUANTIFYING SYMPTOMS

Two simple methods can be used to quantify symptom severity: 1) on a scale of zero to 10, where zero means the absence of any symptom and 10 is the very worst it can be, how would the patient score her pain or fatigue? and 2) the visual analog scale is a straight, 10-cm line upon which the patient can make a mark representing how severe the symptom feels with the left end of the line representing “not at all” and the right being “the worst” (see Table 12-2). Distance along the line can be measured in centimeters, resulting in a numeric figure to record in the medical record for comparison purposes. Actual numbers are unique to the individual reflecting her perception and should not be used to compare her with other patients. Quantification is a mechanism for judging effectiveness of therapy and may alert the provider to a change in disease status.

Table 12-2: Pain Intensity Scales

C. MANAGEMENT OF INDIVIDUAL SYMPTOMS

Effective symptom management is based on a thorough understanding of the symptom and education of the patient and family, allowing them to anticipate crisis episodes with appropriate planning. It requires a multidisciplinary approach. The goal is to help the patient “move from a feeling of helplessness to a feeling of supremacy over the symptom” and develop and retain as much control over her life and illness as possible through the use of practical advice and emotional support (WHO, 1998). Symptoms can be managed with medications and/or nonpharmacologic interventions. In general, the oral route for medications is preferred to the parenteral; treatment regimens are tailored to the individual.

FATIGUE

Scope of the Problem

This is the most frequent complaint of persons with HIV disease in a number of different series (Laschinger, 1999; van Servellen, 1998). Seventeen to 60% of persons, even before they are diagnosed with AIDS, have this complaint (Breitbart, 1998). “Chronic fatigue” is present when symptoms of disproportionate tiredness, unrelated to activity or exertion, last for 1 mo or more. Patients complain of “lack of energy, stamina, or endurance.” Women with fatigue have complained of decreased stamina at work, lowered quality of work, and frequent absenteeism possibly putting their jobs at risk (Semple, 1993).

Once the problem and its meaning to the woman are well delineated, it is important to rule out and treat correctable etiologies (Table 12-3). Anemia, depression, fear of the unknown, hypothyroidism, adrenal or testosterone insufficiency (even in women), occult infection (particularly abscess or Mycobacterium avium complex [MAC]), end-stage renal, pulmonary, or cardiac disease, malnutrition, lack of exercise, and disease progression itself all cause asthenia and fatigue (O’Dell, 1996). In HIV disease, it is often a combination of these factors.

In a study of 438 ambulatory patients in New York City (52% of these had intravenous drug use as an exposure factor), Breitbart showed a significant correlation between fatigue and the presence of pain (p<.0001), higher psychologic distress and poorer QoL (p<.0001), more depressive symptoms on the Beck Depression Inventory (p<.0001), and greater hopelessness on the Beck Hopelessness Scale (p<.0001) (Breitbart, 1998).

APPROACH TO MANAGEMENT

It is important to work with the woman on ways to manage her fatigue even while the work-up is being pursued:

1. Showing interest in alleviating this symptom offers her emotional support, which in itself helps relieve the fatigue.
2. Referring her for a physical therapy assessment and prescription of simple strengthening exercises not only physically attacks the problem but allows her to begin to rebuild her own self-esteem.
3. Keeping a diary of what helps minimize her fatigue and what she can accomplish in a day as well as a daily numeric score (see quantifying symptoms, page 423) involves her in her own improvement and provides a better picture of how this symptom affects her daily life.
4. As each possible etiology is addressed, remind the woman to have realistic expectations in order to avoid becoming discouraged by false hopes.
5. Using a positive, encouraging tone and setting small goals are helpful.
6. Nurses are adept at helping women find ways to eliminate or modify energy-consuming activities.
7. For many people, addressing spiritual issues or supportive counseling at this time may also provide comfort and encouragement.
8. Making use of other health care practitioners not only helps the woman to cope with this exhaustion but also releases the provider to concentrate more on those physical aspects of management that need to be addressed.

Pharmacologic treatments include methylphenidate 2.5–5.0 mg in the morning and repeated in early afternoon or high-dose prednisone followed by a rapid taper. The latter therapy is usually needed only with very advanced disease when the concern for further long-term immunosuppression is not the most important aspect of management.

PAIN

Scope of the Problem

Breitbart (1996) has reported that pain in women with HIV disease is “prevalent, often severe, and highly distressing.” Laschinger (1999), in reporting a phenomenologic study, states that the “pain experience embodies more than physical pain” (not unlike the “total pain” of Saunders). For this reason, understanding and controlling pain in women with HIV disease can be quite difficult because the practitioner must tease out the myriad components in order to optimally manage this symptom.

Surveys of ambulatory populations with HIV disease have documented that the prevalence of pain is 40–60% (Breitbart, 1996; Lebovits, 1989; O’Neill, 1993; Singer, 1993). For those who have more advanced disease and may be bedridden, these figures increase to as much as 83%. However, of those who do have pain, only about 40% are actually treated and of those treated only about 40% ever have adequate pain relief and can still rate their pain as a “seven out of ten” in severity (Anand, 1994). These findings are universal and not limited to those with a history of substance abuse.

In HIV disease, pain can be caused by the disease itself, by therapies used to treat the disease, or by unrelated problems. The most frequent types of pain are abdominal pain and peripheral neuropathy (Anand, 1994; Newshan, 1998) or those caused by infections such as oral, esophageal, or genital/perineal herpes or fungus. Medications for treatment are based on location and type of pain.

As in cancer patients, up to 80% of persons with HIV disease having pain will experience more than one pain simultaneously (Singer,1993). It is not unusual for a patient who has obtained relief from one pain to notice another type of pain that has been masked by the now-relieved pain. It is important to listen to and believe the patient. Carefully document all pain components and their characteristics to avoid a picture of “pseudoaddiction” or a label of “drug-seeking,” in which an individual who is only partially treated continues to ask for pain medication (Weissman, 1989).

One approach to pain management often neglected in the literature is the “phenomenologic,” which means understanding the human experience of pain from the perspective of the patient. Before the use of protease inhibitors, Laschinger (1999) conducted a qualitative study of 22 Canadian patients, predominately gay men but with the one woman who had parallel experiences. They identified four substantive themes as components of pain: physical pain, painful losses, pain of not knowing, and social pain. The one additional factor found in the woman was that she also had concerns related to her children.

“Physical pain” included joint pain, headache, neuropathic and abdominal pain, and skin and mouth lesions. “Losses” referred to loss of energy, time, independence, and relationships. “Not knowing” meant the added anxiety of fearing that the pain might be life-threatening. And “social pain” reflected inability to continue to participate in usual activities. The woman’s fears had to do with how the knowledge of her disease might impact her children’s schooling and how her death would impact their futures. This is a small but important study because it records the actual feelings of patients as opposed to asking for a provider’s perception of what pain means to the patient. Although only one woman was represented, the findings are in keeping with our clinical experience.

Neuropathic Pain

The HIV virus invades both central and peripheral nervous systems where it may be dormant for years or cause acute symptoms. The most common pain syndromes are headache and peripheral neuropathy. The etiology may be immune-modulated, infectious, or drug-related. Treatment should be based on the etiology and location of pain and often requires an adjuvant medication in addition to opioids.

Adjuvants for neuropathic pain are usually an anticonvulsant (e.g., carbamazepine or gabapentin), an antidepressant (e.g., nortriptyline), or an NSAID. One of these medications is started at the same time as the opioid; use of the former may allow use of lower doses of opioid and consequently fewer side effects, although constipation cannot be avoided. In the past, it was believed that opioids were ineffective for neuropathic pain but it is now known that this type of pain simply requires higher doses of opioids. Table 12-4 describes frequent etiologies of neuropathic pain.

Barriers to Pain Relief

There are many reasons offered by providers throughout the world for not prescribing adequate pain relief (American Pain Society, 1999). Many societies fear “addiction” or diversion of medications. Health care workers often approach pain management with inadequate training in pain management skills (Field, 1997; Portenoy, 1994a). Without appropriate knowledge of the pathophysiology either of pain or of its relief, providers may have the same fears as the public, believing that treating pain can “cause” addiction or that they must “save” powerful pain killers for a time when they might be “more needed.” Also there may be the conviction that one should “bear the pain” to show strength or religious faith. All of these notions, while widely believed, have no basis in fact. See Table 12-5.

Principles of Pain Management

Pain, as with any symptom, should be described, quantitated, treated, and promptly reevaluated with appropriate dose modification of therapy. The AHCPR Guidelines for Management of Cancer Pain recognize that pain experienced by those with HIV disease is comparable with the chronic pain experienced by persons with cancer, which often requires management with opioids. Unlike blood pressure, which might be regulated over weeks, pain should be controlled within the shortest time possible to prevent the development of long-term symptoms such as depression and anhedonia.

It is useful to start with the WHO ladder approach, which uses non-opioids initially and progresses through combinations of therapies and next to stronger opioids depending on the patient’s response. (See Table 12-6.) However, in HIV pain, opioids are frequently needed because of the severity of the pain, and there is growing literature that the use of the “second step, or weak opioids” might best be bypassed in HIV-related pain. This second step includes “combination” pain medications, those containing an opioid plus aspirin or acetaminophen, which may increase the risk of hepatotoxicity or bleeding in women receiving highly active antiretroviral therapy. Becoming familiar with one or two agents for pain relief makes pain management easier.

Table 12-6: Pharmacologic Approaches to Pain Management:
WHO Three-step Ladder

The following guidelines (including Table 12-7) are helpful in prescribing pain medication (American Pain Society, 1999):

1. Use a grading system (such as the scale of 0–10) to document pain severity and relief from pain for monitoring the effectiveness of therapy.
2. Start with a dose that will acutely relieve the pain. This may be given intravenously or subcutaneously to achieve a rapid response. Care should be taken to observe for any signs of respiratory depression in opiate-naive patients.
3. Next, begin a low dose every 3–4 hr (based on the half-life of the drug) “around-the-clock” and not on an as-needed basis. The initial dose should be chosen based on the age, size, and renal/hepatic function of the patient. (Suggestions are given in any standard pain-management text such as Principles of Analgesic Use in the Treatment of Acute and Cancer Pain, 5th ed., available from the American Pain Society at http://www.ampainsoc.org).
4. In addition to the every 3-4 hr. “around-the-clock” dose, include provision for a supplemental, or “breakthrough,” dose of about one sixth of the total daily opioid dose to be given every 1–2 hr between the scheduled doses should the pain not be controlled. This allows for development of a steady state drug level and avoids alternation of great pain intensity with somnolence. This is the same approach used to control hyperglycemia with a sliding scale of regular insulin based on glucometer readings; these doses are based on pain scores.
5. When pain is fairly well controlled, it is appropriate to change the patient to a long-acting pain medication for ease of administration. The dose is calculated by adding together the total dose taken in 24 hr and dividing by the half-life of the new preparation. For example, for a medication meant to be given every 12 hr: divide the total dose by two and this number will be your dose every 12 hr. Don’t forget the breakthrough dose. This is a short-acting opioid, preferably of the same type as the long-acting one for use at times that the pain is not adequately controlled (equals 1/6 daily total dose).
6. Liquid formulations are useful for those with difficulty swallowing, as are rectal suppositories; “sprinkles,” which can be mixed with soft food; or patches, which can be absorbed through the skin if adequate subcutaneous fat is present.

Side Effects

Table 12-8 outlines several common side effects of opioids. Opioids usually cause drowsiness in the first 24–36 hr and patients should be advised that this will resolve. Use a low dose to initiate therapy but be prepared to increase the dose over the next 48 hr based on the patient’s pain scores. Nausea is another common side effect in those first few days and can be treated with an antiemetic such as prochlorperazine or lorazepam. All opioids slow bowel motility and patients should be given a stool softener when pain medication is prescribed.

Many prescribers will use an antiemetic or methylphenidate to counteract these symptoms over a few days. Prolonged sleeping after the initial dosing may simply reflect the woman’s need for rest, which has not been possible because of the pain. If side effects are pronounced over a longer period, it is best to talk with the woman about what else is going on and it may be useful to discuss analgesic use with a pain specialist and involve other team members.

Although many providers fear respiratory depression, this is unusual unless an opiate-naive patient is given a large, parenteral dose initially. Most pain (85–90%) can be controlled with oral medications. If the patient is having severe pain in a controlled situation such as a hospital or hospice, an initial subcutaneous injection of morphine or hydromorphone may control the pain more rapidly. Once a patient is on an appropriate dose, side effects (except for the slowed bowel motility) generally resolve and patients return to their usual level of functioning, or even improved activity, because the pain is relieved.

With very high doses, twitching or myoclonus may occur and in this case, it is possible to alternate two different opioids (referred to as “rotating”) or to change to another drug entirely (Galer, 1992). If twitching develops, the patient may have decreased renal or hepatic clearance. In this case the dosing interval should be lengthened or different opioids can be used in an alternating fashion.

Opioid Conversions

Many opioid preparations are available. These drugs are not equivalent on a milligram-to-milligram basis and it is possible to see what appears to be “drug-seeking behavior” if the conversion dose chosen is too low. When changing from one medication to another, use a conversion chart to find the total dose in morphine-equivalent units and convert according to the table (see Table 12-9). There is no “ceiling effect” with opioids as there is with other medications such as acetaminophen, aspirin, or tricyclics; i.e., there is no toxic dose and the patient should be given whatever dose relieves her pain. Just as pain scores are individual, so are ultimate doses. It may be useful to seek the guidance of someone knowledgeable in pain management if you as the provider are not experienced with these medications.

Table 12-9: Dose Equivalents for Opioid Analgesics in
Opioid-naive Adults and Children 50kg Body Weight

Drug Opioid Agonist	Approximate Equianalgesic Dose		Uusal Starting Dose for Moderate to Severe Pain
	Oral	Parenteral	Oral	Parenteral
Morphine	30 mg q 3–4 hr (repeat around the clock dosing) 60 mg q 3–4 hr (single dose or intermittent dosing)	10 mg q 3–4 hr	30 mg q 3–4 hr	10 mg q 3–4 hr
Morphine, controlled-release (MS Contin, Oramorph)	90–120 mg q 12 hr	N/A	90–120 mg q 12 hr	N/A
Hydromorphone (Dilaudid)	7.5 mg q 3–4 hr	1.5 mg q 3–4 hr	6 mg q 3–4 hr	1.5 mg q 3–4 hr
Levorphanol (Levo-Dromoran)	4 mg q 6–8 hr	2 mg q 6–8 hr	4 mg q 6–8 hr	2 mg q 6–8 hr
Methadone (Dolophine, other)	20 mg q 6–8 hr	10 mg q 6–8 hr	20 mg q 6–8 hr	10 mg q 6–8 hr
Oxymorphone (Numorphan)	N/A	1 mg q 3–4 hr	N/A	1 mg q 3–4 hr
Combination Opioid/NSAID Preparations
Codeine (with aspirin or acetaminophen)	180–200 mg q 3–4 hr	130 mg q 3–4 hr	60 mg q 3–4 hr	60 mg q 2 hr (IM/SC)
Hydrocodone (in Lorcet, Lortab, Vicodin, others)	30 mg q 3–4 hr	N/A	10 mg q 3–4 hr	N/A
Oxycodone (Roxicodone, also in Percocet, Percodan, Tylox, others)	30 mg q 3–4 hr	N/A	10 mg q 3–4 hr	N/A

Pain Management with a History of Substance Abuse

Those who have used opioids in the past may have a higher tolerance and thus require higher than usual doses. “Addiction” is a psychological craving and the use of drugs “to get high” or despite personal harm should not be confused with tolerance. When treating someone who has previously abused drugs (or is doing so currently), it is useful to discuss the full plan ahead of time. The patient should understand that this is a two-way interaction, that she must be truthful about her pain and its severity/relief as the provider will endeavor to control the pain. Most people with an addiction history who have legitimate pain are thankful to have it dealt with in an adult manner and understand that this is not a time to engage in manipulative behavior. In fact, many are afraid to take narcotics for fear of relapse.

Seeking a higher dose of drug does not necessarily mean that the patient is “drug-seeking.” “Losing” or forging prescriptions, stealing from or having them “stolen” by others, visiting multiple providers for duplicate prescriptions and injecting oral formulations (Portenoy, 1994a) are signs that the patient may not be using the medication appropriately. She must understand that she will be given adequate drug to last for a clearly described interval, she cannot obtain refills on weekends, and there is only one provider who can write her prescriptions. Situations involving tampering with prescriptions or selling medication should be turned over to legal authorities and will sever the patient-provider supply of medication. Written contracts are used in some clinics but a well-documented discussion in the medical record is adequate.

Women with a history of substance abuse are often poorly emotionally defended and may have inadequate coping skills for even minor frustrations. Low self-esteem and little self-confidence can impact pain and make it worse. Breitbart noted that pain in women is more intense and that those with a history of opportunistic infections or intravenous drug use are “more likely to experience pain” (Breitbart 1996).

Management of pain is not easy and requires a great degree of trust on both sides. Being consistent, open, and fair are important attributes for the provider to model. Providing positive feedback, reducing harm through education, and attempting to understand individual circumstances are most helpful to the patient. Clearly, as a patient approaches the end of life, old habits and fears often resurface and, at this time, the patient may need more support than usual.

Gender Differences

There is a growing amount of literature suggesting that pain in women is undertreated. Breitbart reported that women with HIV disease appear to have “higher levels of pain intensity . . . [and are] more likely than men with AIDS to have their pain under-medicated” (Breitbart 1996).

SLEEP DISTURBANCE/INSOMNIA

Scope of the Problem

Insomnia and excessive daytime sleepiness are primary complaints in persons with HIV disease regardless of stage. Cohen et al. (1996) reported that fully two thirds of patients with AIDS have difficulty falling asleep without correlation with CD4 count. Insomnia includes difficulty falling asleep, difficulty staying asleep, and early morning awakening.

For women fatigue is not necessarily related to sleep patterns although it is important to document what the sleeping pattern is. Using questions similar to those in Table 12-10, try to determine the pattern of sleep problems, the frequency, associated events, and other factors listed below. Treatment should be tailored to the etiology. If you see patients in a busy setting, it is useful to have them fill out a card recalling specific characteristics of the symptom. A nurse can help the patient complete this card, leaving the provider to focus on therapy and documentation.

Assessment

Having the patient keep a sleep diary; bringing a family member to appointments to comment on sleep patterns; and clearly documenting bedtime, how long it takes her to go to sleep, and how long she can stay asleep provide the best picture of this problem. Include a full history of caffeine and alcohol intake and describe the environment and other factors that might affect sleep. Review current medications to eliminate these as a possible etiology that may cause insomnia, particularly NNRTIs and selective serotonin reuptake inhibitors taken at bedtime. Remember that injection drug users may have night sweats and abdominal pains as signs of withdrawal. Simple sleep-wake reversal may herald liver damage. Sleep disorder, classically early morning wakening, may be a symptom of depression (Nokes, 1999).

Management of Insomnia

Treat the underlying problem whenever possible starting with simple environmental modifications, e.g., fresh air; quiet (may need white noise emitter); avoiding exercise, heavy meals, large amounts of alcohol, or arguing just before bed. Plain acetaminophen or aspirin in low doses if not contraindicated may be helpful, as are short-acting hypnotics or sedating antidepressants, e.g., trazedone 50 mg qhs. When underlying depression is identified, appropriate treatment with an SSRI or a tricyclic antidepressant is indicated. (See Chapter IX on Psychiatric Issues.) Short-acting benzodiazepines are useful acutely but should be avoided long-term or in patients with dementia because they may increase confusion (Phillips, 1999). Physical interventions such as massage, relaxation exercises, and deep breathing are also beneficial.

PRURITUS

Generalized pruritus without a rash may be secondary to dry skin, hepatic dysfunction, or an allergic reaction. The rash with scabies in an immunocompromised host may be diffuse and might require biopsy if symptoms do not respond to empiric therapy.

Along with specific therapy for scabies, the patient should be given an antihistamine to break the cycle of itching. Low doses of an opioid are not uncommonly required to conquer this symptom. If the symptoms have been present for weeks, it may be necessary to follow the nighttime scabies treatment with 1% hydrocortisone lotion each morning.

If the itching is thought to be secondary to hepatic dysfunction, holding hepatotoxic agents and using an H2 blocker such as around-the-clock cimetidine for several days is helpful. As the hepatic enzymes return to normal, medications can be resumed at lower doses and/or with longer dosing intervals. This is true if the underlying pathology is not related to the lactic acidosis associated with some antiretroviral therapies. In this case consult a liver specialist before reintroducing medications. These patients are partially relieved with a 1% hydrocortisone lotion containing menthol.

HICCUPS

When intractable, this symptom can lead to poor oral intake and weight loss as well as to depression because of an interruption of all normal activity. Simple mechanical measures such as drinking out of the “wrong” side of the glass and swallowing up-hill against gravity may transiently interrupt these symptoms. The usual medical treatment is low-dose (12.5–25 mg) chlorpromazine orally. Metochlopramide, baclofen, amantadine, benzodiazepines, and haloperidol (Kaye, 1989; Woodruff, 1999) have also been described as useful although there is little evidence base for these recommendations. One treatable cause for this symptom is persistent and severe esophageal candidiasis, which requires aggressive therapy of this infection for relief. Malignancy impinging on the phrenic nerve can also cause hiccup and a chest X-ray is recommended to rule out a mass.

XEROSTOMIA (DRY MOUTH)

This condition can be secondary to medications such as antidepressants, anticholinergics, or HIV medications such as didanosine or zalcitibine. It is generally reversible if noticed soon enough and the drug is stopped. However, if this condition persists without detection and treatment, it may become permanent. Direct invasion of the salivary gland with HIV can also cause dry mouth. Treatment should be directed at the etiology.

Artificial saliva, drinking extra fluids with meals, and fluoride treatments administered by a dentist may be necessary to reverse this symptom. If it is not noticed in a timely manner, tooth decay and gingival disease may occur, resulting in caries and “sore” teeth. Left untreated, the patient may withdraw from society and become quite depressed because of the inability to be comfortable during a meal with others. Pilocarpine drops taken orally 4 times per day have been useful in this syndrome (LeVeque, 1993). However, the onus is on the provider to ask about the presence of this symptom on a regular basis to detect, treat, and reverse the problem.

DYSPNEA

In the original hospice studies in this country, dyspnea was one of the five symptoms correlated with a shortened life expectancy even when patients had no demonstrable disease in the cardiovascular or pulmonary systems. Dyspnea is an uncomfortable feeling of not being able to breathe although the oxygen saturation may be normal. Treatment should be directed at the presumed etiology using bronchodilators, diuretics, and steroids as necessary. In the hospice literature morphine has been used anecdotally as an aerosol with significant relief although this has not been formally proven to be useful; subcutaneous or oral morphine can also be used (start with 5 mg every 3–4 hr). Clinical trials are needed to compare aerosolized morphine with saline nebulizers, which some authors have found equally useful.

Benzodiazepines are desirable to interrupt the cycle of dyspnea and panic that sets in when an individual is having difficulty breathing. A long-acting drug such as lorazepam 0.5 mg can be given around the clock every 6–8 hr to minimize the anxiety in this setting.

IV. Prognosis  TOP

The use of combination or highly active antiretroviral therapy and the ability to measure the existing human immunodeficiency viral burden have significantly impacted the course of HIV disease. With improved antiretroviral therapy, use of prophylaxis for opportunistic infections, and treatment by providers who are knowledgeable about HIV disease, patients can look forward to living longer and healthier lives. However, particularly in resource-poor nations, most will die of this disease. To set realistic goals, the provider must have some sense of the individual’s expected survival time.

Being able to give the patient and family a realistic appraisal of life expectancy, particularly near the end of life, is an important adjunct to disease management. For example, if the woman has several months to live, this may be the best time to review and clarify who will help with decisionmaking as she becomes acutely or seriously ill. It is also a time to investigate and make decisions about guardianship as well as to make a will and determine general advance directives. Deciding which medications to discontinue and when depends upon the provider’s projection of how long the patient has to live.

Although overall prognosis may be difficult to estimate, there are general signs that reflect advanced disease or failure of the immune system (National Hospice Organization, 1996). For example, repeated episodes of opportunistic infections, uncontrollable weight loss, or frequent hospitalizations all suggest that the woman is no longer “doing well.” Once this decline begins and all antiretrovirals have been exhausted or the woman opts for no further aggressive therapy, it is reasonable to focus on issues related to life closure. As the woman becomes weaker, certain therapies may be withdrawn and attention should be directed toward psychosocial and spiritual tasks.

In 1996, before widespread use of combination therapies, the National Hospice Organization published Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases, 2nd ed. (N.H.O., 1996) (Table 12-11), which described indicators for a shortened life expectancy in several chronic diseases including HIV/AIDS. When several of these indicators are present, one should consider the prognosis to be limited unless the use of new or unapproved therapies is possible.

Wasting syndrome based on loss of lean body mass (Kotler, 1989) and anemia are both independent risk factors for decreased survival (Moore, 1999). Median time to death can be related to the severity of each. Persistent oral thrush is also an independent predictor of progression of AIDS. Concurrent unresponsive malignancy or end-stage organ failure shortens the prognosis. Worldwide, hepatitis C is rapidly becoming a leading cause of death.

Although it is not well documented, the woman’s personal goals may significantly affect life expectancy. The experience in hospice care is that people must have completed psychosocial and spiritual goals before being able to peacefully “let go.” For women with children this may mean making reasonable guardianship arrangements called permanency planning. For others it may mean resolving a relationship or coming to terms with her life events or accomplishments. Saying goodbye to loved ones and to care providers is a last necessary step before death.

V. Telling The Truth And Breaking Bad News  TOP

Communication skills are particularly important as the woman’s health begins to decline. Being a good listener is paramount and there are concrete skills that can be learned.

Baile and Buckman discuss how to talk about difficult topics described in Table 12-12 (Baile, 1998). They note the importance of paying attention to the physical environment when having serious discussions with patients and families. It is important to have privacy, quiet, and lack of interruptions as much as possible. The provider should sit down to talk with whatever “family” the patient wishes to include. The use of touch may be comforting although it is important to gain permission first. Body language and eye contact are a part of the setting.

When discussing emotionally laden issues or breaking bad news, it is best to ask what the perceptions are of those present, whether you are addressing the woman alone or her friends and family. “Before I talk, tell me how you think you are [she is] doing?” “What are your concerns at this time?” Not only does this help the provider to know where to begin but it provides a vocabulary to use in this discussion. Words used by them will suggest vocabulary as well as degree of comprehension. Avoiding jargon or strictly medical terms is helpful. In the case of bad news, it is useful to provide a warning statement such as “I have some bad news for you” or “This is a very difficult time and I want you to be prepared.” Once the facts have been communicated, it is important to determine what the reaction is to this news. Providing a period of silence may help those involved to gather their thoughts before speaking (Weissman, 1998).

Listening skills include asking open-ended questions and repeating the last comment made by the patient or family member to clarify what has been said. Acknowledge emotions by using empathic responses even if the feelings themselves are unimaginable to you. After a period of discussion, develop a strategic plan with the patient or family by discussing expectations and goals. Use this time to reassure that there will be future conversations. Summarize what has been discussed and ask for any remaining questions.

VI. Realistic Goal Setting And Advance Planning  TOP

We must all learn to think ahead to a time when we may not be healthy and able to care for ourselves. Women, in particular, need to make provisions for others they care for such as children or an elderly parent. Thinking ahead prevents confusion and also assures that no one person will be burdened with matters near the time of death. Each woman needs to select someone who will be able to manage her legal affairs and also someone to make medical decisions for her should she not be able to do so. This may be two different people but it is important for the woman to discuss her own wishes with that person early in her illness. By doing it at a time when she feels well, she can remain in control and make her own choices (see Table 12-13).

A. IMPORTANCE OF MAINTAINING HOPE

To provide the most supportive and sensitive care throughout illness, the provider must understand the overall goals of the patient. As the woman moves through her disease it is necessary to intermittently discuss these, preferably while the patient is feeling well and able to feel more in control of her disease. Just as quality of life evolves, so do desired outcomes. Many medical providers seem to fear that having these discussions might “take away hope.”

Hope is not false expectation. It can be redefined in an acceptable way for the individual. Whereas hope for a long life may no longer be possible, hope for being able to leave good memories behind for children may be fulfilled by making a scrapbook, audio tape, or even a video. One can simply hope for days that are meaningful (Bennett, 1995). Multiple studies document that having a sense of spiritual (not necessarily religious) well-being has a positive effect on health (Colman, 1999).

Hope “. . . is the emotion upon which all the other emotions of elation are grounded. . . shaped by a glimpse of something not yet clearly within sight. . . always looks toward creative changes. . . an expression of the will to live. . . of an individual’s trust in life. . . even terminally ill persons express the feeling that things will somehow get better. . . that as long as we live, we live for a better future” (Kast, 1991). It is not a commodity that one person gives to another but is within the individual and can be modified accordingly. Ernst Bloch in The Principle of Hope wrote:

“What matters is learning to hope. Hope does not abandon its post. It is in love with success rather than failure. Hope, superior to fear. . . reaches out; it broadens rather than narrows” (Bloch, as cited in Kast, 1991).

He apparently “saw hope in daydreaming, fantasy, and imagination.” Albert Schweitzer also believed that imagination was what allows the human to tolerate the present.

B. PERSONAL GOALS

In discussing goals, it is useful to ask the woman, “What aspects of your life are most important to you? What have you accomplished in your life that makes you feel proud?” This is also a time to determine which other persons she cares about and who provides her support. Frequently, it is a family anniversary or event, such as the birth of a grandchild, that comprise the woman’s true goals.

Each of us has dreams. It is up to the provider or other members of the team to discover those and help the woman to see how they might be achieved. With HIV disease the young woman may not have had time to realize her dreams. In this case, the team must help her value the life she has had and to discover and acknowledge what it is that she wishes remembered about her life. She can also be assisted in grieving the loss of future. Sharing a funny story or memory of a special event helps the young woman know that she has left her mark.

C. ADVANCE CARE PLANNING

Once the provider understands what is important to the woman, it is much easier to talk about the kind of care she would like to receive near the end of life. Being able to hold her granddaughter may be more important than living another year. Once broad goals cans be identified, the team needs to shift from a tactical approach to care to a more strategic one. Bennett (1995) refers to this as changing from a “cure-based approach to a psychosocial model.” It means to target an overall goal rather than to get bogged down in correcting the electrolytes. Being at home may be more pertinent than having the last potassium adjusted or receiving the final days of a course of intravenous antibiotics. Being free of pain and in a dry bed with loved ones present may be the ultimate goal.

Although the term “advance directive” makes sense to those in the health care environment, these words may be essentially meaningless to the woman and those who make up her support system. In trying to determine what the patient wants it is necessary to use concrete and explicit terms when discussing this topic. It is important to develop a “psychosocial success” register where psychosocial desires and resolutions can be formally recognized; this might be done during a case conference with staff.

VII. End-Of-Life Issues  TOP

A. PHYSICAL COMFORT NEAR THE END OF LIFE

When the patient is bedridden, it is comforting to be surrounded by photos or objects that remind her of events and people she would like to remember or that make her happy. Being in a home-like environment is the desired resting place for many (American Health Decisions, 1997). Attention to reducing noise, providing a fan or some means of air movement, serving small portions of food several times throughout the day rather than three large meals, and playing music or reading stories may all provide comfort. If the patient has a favorite pet or small children she might enjoy short visits with them.

Complementary therapies such as massage, guided imagery, or acupuncture are widely used and can provide comfort to those for whom they are familiar. Others may not appreciate being touched by strangers and it is always important to discuss these methods before introducing them. Likewise, incense or peppermint oil may be used to mask unpleasant odors; activated charcoal on a gauze pad or chlorophyll tablets can accomplish the same result.

Cultural beliefs and rituals become very important at this time. Use the rest of your team to discover what practices must be respected, because ignorance of these might inhibit a peaceful transition and leave bad memories for families and friends. For example, some cultures or religions require that the patient receive fluids or that the health care workers give the appearance of performing resuscitation attempts or efforts to prevent the actual death. Knowing these beliefs ahead of time will allow for the staff to prepare and conversations to be held that might preclude misunderstanding.

Once the patient and family have made the final decision for “No cardiopulmonary resuscitation (CPR),” many health care workers are at a loss for exactly what to do. Although fluids and antibiotics may be withheld, there are still many techniques that staff can employ to support the patient and family as a unit. It has been suggested that “Orders to Intervene” should be written.

Alexander, Perrone, and Reiss (Alexander, 1999) have developed a mnemonic for remembering simple medical orders that might be implemented as an example of these interventions (see Table 12-14). The care provider should recognize that despite the end of curative interventions, there is always something that can be done to comfort both patient and family. By reversing “No CPR” and writing orders for “RPC” the team can continue to offer support. Reassurance of continued involvement by the health care team, presence at the bedside on a predictable basis, and an attitude of caring that respects individual goals and comfort are the least that can be done. The Oxford Textbook of Palliative Medicine, 2nd ed. (Doyle, 1998) contains a wealth of knowledge for those who want to give good supportive care.

B. CLINICAL TREATMENT

Treatments that have been used throughout active disease may need to be modified as the woman comes closer to dying. Using complex diagnostic procedures and prolonged courses of therapy may not be necessary at the end of life and may be a significant burden to the patient. Short bursts of antibiotics may be all that is needed to arrest a symptom. Such judgments must be based on realistic prognosis as discussed earlier in this chapter. For example, a woman resistant to oral antifungal agents may need a brief course of intravenous therapy if this offers the quickest relief of her symptoms.

If there are high fevers and sweats presumed secondary to MAC she may no longer tolerate the usual combination of drugs, and single-agent or short-burst doses may be adequate to control symptoms at a time when a reduced pill count is the overriding goal. One of the difficult aspects of managing the end stages of illness is knowing when it is appropriate to discontinue certain therapies. Much of this decisionmaking is based on the provider’s ability to provide realistic prognostic information to the patient and family. For example, prophylactic therapies might be discontinued in the last 3–4 weeks of life; they can easily be resumed should the woman become symptomatic.

C. CONVERSATIONS FOR THE END OF LIFE

Families often fear that discussing death might “scare” the dying person. However, most people know when they are dying and are relieved at being able to discuss their fears or beliefs. Women in particular often feel a need to “protect” those around them and may be more comfortable talking about their impending death with someone who is not a family member. Although most people feel awkward around someone who is very ill or dying because they “don’t know what to say,” there are a number of things to talk about.

Most people near the end of life want to know that their time on earth has been worthwhile. They want to know that they have been loved, that they will be remembered, and that they are forgiven for things they may have done wrong. One simple method for achieving these goals is to “do life review” which means to ask to hear stories of the person’s life: what she is most proud of, what is the funniest thing that ever happened to her, what she is ashamed of or wishes she hadn’t done. By asking these questions, the listener can reassure the person that those positive memories will stay alive. By talking about negative events, they can be minimized or forgiven.

An anonymous hospice nurse once said that there are five important conversations for the dying person to have to assure a peaceful death (Byock, 1997). These are “Thank you,” “Forgive me,” “I forgive you,” “I love you,” and “Goodbye” (Table 12-15). The last of these is the most difficult both for the dying woman and for those who will be left behind. But this is the most important conversation because the dying need to feel reassured that those left behind will be able to take care of themselves. This is especially true of women regarding spouses and children; it is accentuated when the woman is young and there are young children involved. Those being left behind must also say goodbye by giving the dying woman “permission to go,” which represents their acceptance of the finality of the death. This permission must also be verbally granted by health care providers who may have become like family members near the end of a long illness.

Forgiveness and reconciliation are spiritual as well as personal issues (Hall, 1998). Depending on the woman’s belief system, it may be important to have a priest, a pastor, a rabbi, or other spiritual representative present throughout the last month of life. In societies where large numbers of women are dying, there may be insufficient care givers because this is a role often assumed by women. It is important to find someone to sit with the dying woman to provide comfort and security in her last hours. Simple presence without conversation represents real support and caring.

Puchalski defines spirituality as “whomever or whatever gives one a transcendent meaning in life.” She suggests doing a spiritual assessment of the woman at the same time that other historical information is gathered. The mnemonic FICA is useful for remembering what questions to ask (Table 12-16).

D. TIME OF DEATH

At the time of death it is important to be familiar with the woman’s customs. Friends and family present may want to hold hands or stand in a circle around the bed. A prayer or song may be said or sung together. In many cultures, the women (or men, depending upon the belief system) will want to wash the body, perhaps apply oils, and to wrap the body in appropriate garments. Staff should be aware of these practices and allow the family as much time as is needed to complete these rituals. It may be necessary to wait for other friends or family members to arrive to say their own goodbyes. Children should not be kept from participating and will understand the death within their own age-related construct.

E. GRIEF AND BEREAVEMENT

Grief is the process and work of adjusting to the irrevocable loss of persons, objects, relationships, and dreams. The grieving period often begins before death (anticipatory grieving) but may appropriately extend for two years or more after death depending upon the nature of the relationship. Grief is a normal response to loss and includes such symptoms as sadness, crying, withdrawal from other friends and family, loss of drive or ability to concentrate, and fears of “losing one’s mind” or experiencing physical symptoms similar those of the person who died. The grieving person requires significant support such as brief visits, phone calls, or invitations to simple social events. Many community hospice programs can provide this type of support.

One role of the palliative care team is to assure that care is given to those left behind, the bereaved. Because of the concentration of activity near the time of death, the bereaved may not feel the full impact of the death for at least two weeks after the actual event. Contact at this time is helpful as is remembering the person on important anniversaries such as one month after the death, holidays, and days particular to the individual who died such as a birthday or wedding anniversary. The first and tenth year anniversaries of the death are a often a difficult time for families and friends. Many cultures have rituals related to the date of death that continue to comfort those surviving. Coping strategies that have been useful throughout the disease can also be applied after the death of a loved one.

MULTIPLE LOSS

Having to mourn a second or third person soon after the death of the first is generally more than any individual is able to cope with alone. Dean (1995) found a direct relationship between the number of bereavement episodes suffered by one person and the development of “stress response” symptoms or, as Rando says, “psychic numbing” (Rando, 1993). Although the phenomenon of “multiple loss” has been acknowledged in association with natural disasters and concentration camp survivors, there has been little published about how to cope with and resolve the issues raised by multiple loss.

Many survivors of multiple loss are afraid to openly grieve for fear of losing control of their emotions. Holding onto this grief produces a syndrome similar to that seen with “burn-out” (Bennett, 1995; Price, 1984). Emotional numbing, withdrawal from others, misdirected anger, a lack of pleasure in anything, and resorting to use of drugs or alcohol are all common elements of this syndrome. Kastenbaum (1969) called this series of consecutive losses “bereavement overload.” More recently Nord (1996) has delineated four stages of response to multiple AIDS-related loss. These are not mutually exclusive stages and may occur at random rather than in a linear fashion. These stages are: 1) shock and denial, 2) overload and confusion, 3) facing reality, and 4) reinvestment and recovery.

The traditional bereavement model is inadequate for grieving the multiple losses experienced by survivors of AIDS-related loss. Care of persons with AIDS is complicated by the fact that the care giver may himself or herself be infected and facing death. It is important to be able to refer the care giver for appropriate medical care and counseling. Depression is not unusual and, particularly in those who are also infected, should be treated appropriately and aggressively, even at the time of death of the loved one.

Not only members of the gay and hemophiliac communities (which have been hit particularly hard by the epidemic), but mothers of inner city minority youth who may have experienced the death of more than one child and are often alone in trying to resolve their grief are at risk for complicated mourning. “When multiple deaths occur, the people to whom the mourner would ordinarily go for support are gone” (Rando, 1993). Therefore, new models for dealing with these losses need to be developed. Survivors of multiple loss might be helped by a referral for professional counseling.

A time-honored hospice technique has been to attempt to make the sufferer aware of the many manifestations of grief by verbalizing that thoughts of “going crazy” are not unusual and by reassuring those grieving that they, as survivors, are and will be OK (Table 12-17). According to Nord (1996), “social support, community involvement, and fostering a sense of purpose are useful” toward achieving the goal of empowerment, which helps reduce the role of victim. Achieving a sense of balance in life and pursuing a “life outside of AIDS” give survivors a necessary source of detachment. Physical exercise, meditation, and trips away from the usual environment are acceptable methods used to care for the care provider (Table 12-18). An active sense of humor is also helpful.

“Bearing witness” means keeping the memory alive; the AIDS quilt is a good example. The quilt is also an example of the power and importance of ritual. Making a quilt panel is a shared experience that provides support for the makers and for the viewers. Memorial services on a regular basis can be comforting and assist the survivor in bringing closure for an individual death.

GUIDELINES FOR AFTER THE DEATH

Mallinson (1997) has outlined guidelines for addressing grief that might be useful in working with those who are surviving loss from HIV disease. Simply rehearsing words or phrases ahead of time makes it easier for the health care team to interact with survivors during a time many find awkward.

• Acknowledge the death: “I understand that your [partner; spouse] died last week. How is this going for you?”
• Validate the importance to the survivor: “You knew her for a long time, and the two of you were very close. What was she like?”
• Speak of the deceased when appropriate: “I remember when Tommy was first born. This would have been his second birthday this week. How are you feeling?”
• Note the existence of multiple losses: “Since you have been coming to clinic, you have lost your partner, your best friend, and now, your daughter. I can’t imagine what it is like. How do you handle the grief?”
• Learn about grief and loss: Take courses, attend workshops, read research, and acquire therapeutic communication skills.

VIII. Care Of The Care Provider  TOP

Palliative care is difficult work because it requires that team members suspend personal needs or beliefs in deference to the desires of the patient and family. It requires a degree of emotional maturity and insight regarding personal feelings or beliefs that might interfere with the work. One must develop coping skills for both external and internal stressors (Bennett, 1995). “Debriefing” is important and must be a recognized part of this care.

Although “support groups” often seem like a useful mechanism, they can be burdensome themselves and are not helpful for everyone. Staff must have a recognized way to “take a time-out” and be flexible enough to “cover” for a colleague who needs a bit of time to “regroup” (Puckett, 1996). Many who do hospice work have learned to take breaks or minivacations, to develop outside interests, or to do community service of another type. Without conscious support of all members of the team the burn-out rate would undoubtedly be high (Price, 1984).

IX. References  TOP

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