A Clinical Guide to Supportive and Palliative Care for HIV/AIDS

Chapter 16. Grief and Bereavement

"Can it be in a world so full and busy that the loss of one creature makes a void in any heart so wide and deep that nothing but the width and depth of vast eternity can fill it up?"

-- Charles Dickens

Most of us answer "yes" to Dickens' question. The experience of a death of a loved one can be one of profound sadness and loss. The multidimensional responses to a loss are all part of the grief process. This process is often complicated when the death is AIDS-related. If the death of one individual can be as devastating as Dickens' question presupposes, what happens when people experience multiple significant deaths, as most bereaved in the HIV community do? There are unique challenges and needs in the bereavement process for people coping with AIDS-related deaths. This chapter will explore the nature and process of grief and identify interventions for use by the palliative care team in helping the bereaved cope with their losses, adjust to a changed life, and be open to personal growth and transformation.

The Language of Grief

Grief is the normal, dynamic process that occurs in response to any type of loss. This process encompasses physical, emotional, cognitive, spiritual, and social responses to the loss. It is highly individualized, depending on the person's perception of the loss and influenced by its context and concurrent stressors.1

Mourning is often used interchangeably with grief, but mourning more specifically refers to the public expression of grief. This public expression (perhaps crying or wailing) does not necessarily relate to the significance of the loss; it is usually related to cultural and religious values and encourages social support for the mourner.2

Bereavement is the state of having suffered a loss. This incorporates the period of adjustment in which the bereaved learns to live with the loss. The root of the word "bereaved" means to be robbed of something valuable.2

Complicated mourning arises from an interrupted or obstructed grief process. Rando2 uses this term to refer to potentially harmful outcomes, from somatic discomfort to chronic emotional distress, and even the possibility of death, when grief is unaccommodated. There are risk factors that can lead to complicated mourning; many of these factors apply to AIDS-related deaths.

Anticipatory Grief

Grief responses do not begin at the death of the loved one; rather, they begin as soon as symptoms develop that people perceive as life-threatening. Lindemann referred to these responses as anticipatory grief.3 Both the person with AIDS and those who care for that person experience anticipatory grief. However, the anticipatory grief does not replace the necessity of grieving after the death.4 Rando delineates these responses from post-death grief and asserts that the term anticipatory grief is misleading because "anticipatory" connotes future losses, whereas in actuality people are dealing with past and present losses as well.5

Anticipatory grief includes changing assumptions, adapting to role changes, finding a balance for staying separate from, yet involved with, the patient, and experiencing feelings of sadness, depression, and anxiety.6 The patient and caregivers have the opportunity to absorb the impending loss gradually over time. Often the people involved must change their assumptions about the way the world works and what their future will hold. Statements such as "I always thought ..." or questions like, "What will I do?"and "How will I live?" are examples of this process.

Patients and caregivers also struggle with secondary losses: loss of health, security, employment, relationships, meaning, and the future. As the disease progresses, the losses increase and intensify. Facing these losses can be overwhelming for all involved.7

One benefit of this process is the opportunity for people to complete unfinished business, whether practical, emotional, or spiritual. The opportunity to get affairs in order, make wishes known, prepare for final arrangements, reconcile with loved ones, express gratitude, and say goodbye can be meaningful for the patient and the caregiver.6

If the illness is prolonged, the period of anticipatory grief may become problematic. Those caring for the person with AIDS may emotionally withdraw too soon and experience ambivalence about the length of the illness and caregiving responsibilities. This can lead to feelings of guilt during the illness and during bereavement.8

Another complicating factor is that often the caregivers are HIV positive as well. In dealing with their own physical health issues, the threat of personal loss and facing their own mortality are very real.8

There have been conflicting studies as to whether the opportunity to grieve before the death impacts the bereavement process by lessening the length of bereavement and/or easing the pain of grief.9 Worden notes that grief is multidimensional and it would be too simplistic to claim that a time to prepare for the death of a loved one correlates positively with a shortened bereavement period.8

However, the palliative care team should be aware of the process and common themes that emerge during anticipatory grief because the responses may have an effect on caregiving and the emotional status of the person with AIDS.8 Brown notes that suffering surrounds loss and death over the entire illness trajectory.4

Health care professionals can facilitate the anticipatory grief period by:

  • Identifying and legitimizing feelings of sadness, anger, guilt, and anxiety

  • Encouraging expression of feelings in private, comfortable settings

  • Redefining terms related to expressions of grief ("lose control" or "break down" can be reframed into "emotional releases," which are normal, expected aspects of coping with stress and grief)

  • Enabling people to complete unfinished business

  • Encouraging people to live fully and enjoy life whenever and wherever they can10

As people face their death, they want to know that they will be remembered and that their life had meaning. Engaging patients and caregivers in life review and memory work are effective interventions in coping with anticipatory grief.11 Zulli suggests religious rituals, meditation, use of photography and/or videos, and journeys (one last trip to a favorite place) as therapeutic tools.12

Factors That Affect the Grief Process

Several factors affect the length and intensity of the grief process. These may help or hinder the bereaved move through the grief process. For those dealing with AIDS-related deaths, many of the factors experienced indicate significant risks and often complicate the grief process, leading to potentially dangerous health outcomes.

The Nature of the Relationship Between the Deceased and the Bereaved

This is a crucial factor during the grief process. Generally the greater the bond between the deceased and the bereaved, the greater the grief experienced. The type of bond (parent, child, partner, sibling) does not necessarily indicate the intensity of grief; every relationship is unique. However, the death of a child is usually always considered a high risk for the bereaved parent(s).2 If there was an ambivalent or codependent relationship, this can also complicate the grief process, as the bereaved may face intensified emotional responses.8

For those dealing with AIDS-related deaths, another complicating factor is that often the relationship may be disenfranchised, or not socially recognized as a valid relationship for which to grieve.13 These disenfranchised relationships can include the death of a partner, an ex-spouse, a friend or co-worker. Additionally, young children, the elderly, and the developmentally disabled are often considered unable to comprehend the loss, therefore unable to grieve. Anyone who is able to create a bond is able to grieve when that bond is threatened or broken.13

Often these disenfranchised grievers need additional support due to the risk factors experienced during their loss and yet are denied even general sympathy from society. Some are excluded from the post-death rituals, denying them an opportunity to say goodbye to their loved one and limiting the social support at a crucial time.8

The Manner of Death

The perception of preventability of the death is a crucial factor that can complicate the grief process. For those grieving deaths from early in the AIDS pandemic, the fact that the loved one did not live long enough to benefit from new treatments is difficult to reconcile.7 And for those grieving recent AIDS-related deaths, there are different preventability issues to be faced: medication noncompliance, accessibility of treatment, and efficacy of treatment.7 If the bereaved believe the death could have been prevented, the risk for a complicated grief process increases.2

Length of illness is another important factor. Now that living with AIDS is often a chronic illness, there is a longer period of uncertainty about the future. Trends seem to indicate that death from AIDS is now met with disbelief rather than as an anticipated fact.7 Chronic or prolonged illness often means the entire family structure is changed in order to accommodate care. People may have to rearrange work schedules or not work at all; they may need to find additional caregivers and/or financial support. These stressors on the family system can also complicate the grief process.2 As treatment advances, health care professionals may find that their anticipatory grief and bereavement period are affected by closer bonds that have developed as a result of patients who are living longer.7

Symptoms and side effects of the disease may also affect the grief process. Doka identifies two symptoms that correlate positively with complicated grief: disfigurement and mental disorientation.11 The challenge of coping with these symptoms can create ambivalence and premature detachment from the patient. People with AIDS are at risk for both symptoms.

Unfortunately, an AIDS-related death is still a disenfranchised death in most societies (along with deaths from homicide, suicide, and drugs). Patients sometimes choose not to inform family members or friends of their diagnosis and AIDS is often not mentioned in obituaries or at funerals. The social stigma associated with AIDS-related deaths can lead to complicated grief responses.14

The time of death experience is an individualized factor. Some may experience increased guilt if they were not able to be present at time of death; some may experience increased distress depending on their perception of the dying experience.

Social Variables

A key indicator in how the bereaved will cope is the availability and use of a good support system. The support system may include family, friends, coworkers, neighbors, religious communities, pets, and professional support. Many families come to rely on the support of the health care team during the patient's illness; in fact, due to the disenfranchised nature of the death, other typical sources of support may be lacking. Once the patient has died and the health care team is no longer regularly involved, the family is coping with not only the death of a loved one, but the loss of their main support as well. Reinforcing or feeding into the anger felt by the bereaved at the lack of family and community support only further distances them from potential sources of future support. Rather, encourage and strengthen connection with family, friends, and the community.

Cultural and religious beliefs and practices may provide comfort for the bereaved but may also intensify grief responses. Regardless of cultural and ethnic background, the family of origin plays a significant role in how the beliefs inform the bereaved's coping style. (See Chapter 14: Culture and Care.) Familiarity with the beliefs and practices of other cultures and religious groups will provide a general framework for the palliative care team.15 Cultural differences should be considered before judging a person's grief style as "abnormal" or "pathological," but stereotyping grief responses of an individual based on a cultural group can be inaccurate and offensive.16 It is best to ask the individual person how their beliefs and practices are affecting their grief process.

The personality traits and coping style of the bereaved will also impact on the bereavement period. There is no "right" or "wrong" way to grieve (as long as it is not harmful to the bereaved or another); the key is to find ways that work for that particular person. Some people will never shed a tear publicly, others will cry every day for months. Talking about the loss and expressing feelings related to the death can be very healthy for some people, yet threatening for others. Doka and Zucker are exploring different styles of grief and define a continuum of grieving styles from highly intuitive (process, feeling-oriented) to highly instrumental (linear, task-oriented).17 Identifying styles on the grief continuum will have implications for grief support. For example, a highly instrumental griever who is focused on cognitive responses and benefits from accomplishing tasks may not find a bereavement support group that encourages expressions of feelings particularly helpful.17

Some communities are coping with a disproportionate number of AIDS-related deaths. This can lead to bereavement overload, when the bereaved experience a series of losses and accumulate unaccommodated grief that may lead to unhealthy physical, emotional, and spiritual responses.18 In addition to experiencing the deaths of many loved ones and friends, the bereaved may also experience other losses. These losses may include loss of their community, loss of meaning and purpose, loss of privacy, loss of role in society. Coping with bereavement overload and multiple losses increases the risk of a complicated grief process.2

Other stressors that can complicate the grief process are mental health issues, substance abuse issues and problems with physical health. If the bereaved survivor is also living with HIV, he or she may be experiencing normal physical grief reactions that can mirror AIDS symptoms. For example, a typical physical grief response is weight loss, yet a symptom of AIDS is wasting. A common cognitive response to grief is the inability to concentrate and this can mirror the AIDS symptom of dementia.19 It would be important to refer the bereaved for appropriate medical evaluation in these circumstances.

Substance abuse issues can complicate the grief process in several ways. Survivors may experience guilt related to participating in activities that increase the risk of transmission of HIV.8 Corless notes that, "In the gay community, bereavement tends to occur among members of the same generation. In communities where injecting drug use is high, members of different generations of a family are dying of the same disease."20 Unfortunately, many children are orphaned when parents, and even other siblings, die from AIDS. In other situations, drugs and/or alcohol are used as coping mechanisms during bereavement and this often leads to complicated grief because these methods of coping mask the actual grief responses and can limit the opportunities for the bereaved to deal fully with their grief issues.

Again, it is important to note that grief itself is not pathological but the factors noted above can interfere with, or complicate, the grief process. Various terms that have been ascribed to obstructed grief: "morbid, atypical, pathological, neurotic, unresolved, complicated, distorted, abnormal, deviant, or dysfunctional."2 The inconsistency of terms mirrors the issues in defining and treating grief that has been complicated.2 (See Chapter 10: Psychiatric Problems.)

Tasks of the Grief Process

Many grief theorists use attachment theory to develop their understanding of how grief works. British psychiatrist John Bowlby proposes that human beings tend to make strong affectional bonds with others as part of a need for security and safety.21 When these bonds are threatened or broken, strong emotional reactions occur; we name these responses grief.

Recent grief theorists have built on Bowlby's work (see Table 16-1, PDF). There are distinctions among each theory, but most include an initial phase of shock or numbness, a time of disorganization and a process of reorganization.

These traditional models have been challenged in recent years. One issue is the use of "stages" to describe the grief process; this term implies a passive reaction to loss, and critics assert that moving through grief is an active process.5 Some believe that traditional models focus too heavily on emotional responses to loss and de-emphasize cognitive responses.5, 17, 22 Another concern is that in these models the aim of the grief process is for resolution, or a return to the premorbid state of being. Rando encourages the term accommodation rather than resolution, recovery, or completion.2 Accommodation implies an active process of adapting to fit specific circumstances, rather than a linear process with a final endpoint. Recent models of bereavement highlight grief as a dynamic process around which certain themes can be distinguished and personal growth and transformation emerge as possible outcomes.23

Traditional bereavement models usually describe grief that results from a single loss; AIDS-related grief experiences of multiple loss and bereavement overload challenge these frameworks.1

The work of William Worden is used to illustrate the grief process in this chapter. His "tasks of mourning" are a way to understand the grief process more fully.8 The word "tasks" is used intentionally to emphasize that dealing with the responses to grief takes effort; hence "grief work." Worden acknowledges that the tasks do not have to follow a specific order and that people can work on more than one task at a time.

Task I: Accept the Reality of the Loss

The first task of grieving is to acknowledge and accept the reality that the person is dead and will not return. This task can take time, as the bereaved often experiences a period of numbness, shock and disbelief even if the death was expected.8 The bereaved may experience a period of searching or yearning for their loved one. Some people report they expect to see their loved one when they arrive at home, or attempt to contact them by calling out or reaching for the telephone before remembering that the person is gone. Many people find themselves continuing their old routine, such as setting the table for two people even though one spouse/partner has died. The bereaved may even refer to their deceased loved one in the present tense or use the present and past tense together in the same conversation. These are all examples of working to accomplish the first task: accepting the reality of the loss.

Traditional rituals such as funerals or memorial services can help people accomplish this task. This public method of saying good-bye helps people confront the finality of the death. Often the first visit to the cemetery reinforces the finality of the loss as well.

The primary aim of grief support at this task is to help people accept the reality of the loss in their own time and at their own pace. It may take days or weeks for the reality to be accepted, even longer for it to be fully absorbed.

Task II: Experience the Pain of Grief

The second task of mourning is for the bereaved to allow the pain of grief some form of healthy expression. The pain of grief includes physical, emotional, behavioral, cognitive, spiritual, and social responses to the loss (see Table 16-2, PDF). This task is crucial because if the bereaved cannot, or does not, acknowledge the pain of grief in some way, these responses could manifest themselves in unhealthy ways.8

Coping with the pain of grief will be unique to every individual. These responses are common themes that occur during bereavement; not every person will experience every response.

People do experience actual physical responses to a loss. Although Stroebe reports that the physical health of the bereaved is at risk after a loss, many of the symptoms reported to physicians during bereavement are normal, expected responses to grief, not pathological.24 This can lead to inappropriate use of health care services.25

As noted earlier, in AIDS-related deaths, often the survivors may be HIV positive and experience both normal physical responses to loss, as well as symptoms of AIDS19 and appropriate medical evaluation is warranted.

Emotionally, people tend to experience a wide range of feelings. The initial shock and numbness usually subside after a few weeks or months and thoughts and feelings that were present all along begin to surface. Many bereaved report significant emotional responses 6 months after the loss as the reality is fully absorbed: "I thought everything was fine but now I feel like things are worse." While some people need to express their feelings and talk about the loss repeatedly, others do not experience grief emotionally as their primary response and therefore do not need to process their feelings. Some may even experience dissonance if painful feelings are experienced but are unable to be expressed: "I may appear normal on the outside but on the inside, I'm screaming."11

Sleep disturbances and appetite changes are the most common behavioral responses. Behavioral responses may vary due to cultural and gender factors,8 but most cultures include crying as an acceptable response to death.16 The bereaved should be wary of the risk of increased use of alcohol, tobacco, and tranquilizers.25

Recent grief theories are emphasizing the cognitive responses to loss.5, 23 This may be the primary way some people experience grief (the "instrumental griever" 17). Initially many bereaved report a fear of "going crazy;" education and normalization of the grief process may help assuage this fear.

Spiritual responses to loss are also highly individual. Even those who have a strong spiritual or religious belief system may not be comforted by their beliefs. One of the crucial aspects of the spiritual response to loss is the ability to make meaning from the experience.23, 26

An aspect of grief that is often ignored is the social response to loss. In AIDS-related deaths, people may be coping with social isolation due to stigmatization.1 Neimeyer highlights the importance of the social unit in his work on using constructivism to facilitate the grief process.27

Task III: Adjust to the Loss

The third task refers to the work of developing the skills and filling the roles necessary to move forward without the deceased being physically present.8 Usually this task can only begin after several months of dealing with the loss. It may include adjusting to living alone, being a single parent, getting a job, learning to manage finances, or taking on household tasks. For those dealing with HIV, it can also mean needing to find other caregivers.

Some bereavement support groups use the image of Janus, the Roman god of departures and returns, beginnings and endings, as a symbol for their group. This two-faced god, who looks both forward and backward, is an appropriate symbol for this task as the bereaved struggle with looking back to acknowledge what has been lost and beginning to look ahead to see what is possible in their lives.

Part of adjusting to the loss is facing all the significant "firsts" that occur in the first year of bereavement. Coping with the first holiday, birthday, or anniversary without the loved one can trigger a temporary upsurge of grief.2 Grief responses can be triggered by cyclic precipitants such as holidays or anniversaries, linear precipitants that are one-time occurrences related to experiences or age (i.e., not being present at an important function), and stimulus-cued precipitants, including reminder-inspired reactions ("we always used to ...") and music-elicited reactions.2 An upsurge of grief may include a return of physical symptoms, various emotional responses, changes in social behavior, and spiritual distress. These temporary reactions must be distinguished from complicated grief, and should not be misdiagnosed as pathological responses.

Task IV: Reinvesting Energy From the Deceased Into New Life

The fourth task of mourning refers to the ability to transfer the emotional energy invested in the relationship with the deceased into new, healthy approaches to life.8 This does not mean that the deceased is now "forgotten" or that the bereaved has "obtained closure." Rather this task refers to the bereaved's ability to establish a new connection with the deceased, one that can transform their new life. Browning explains this concept as "saying good-bye to grief, without saying good-bye to the loved one."28

Reinvesting the emotional energy into new life may include a variety of methods. Simple gestures such as considering the deceased's perspective in a difficult situation or wearing a locket with a picture of the deceased are examples of this reinvestment. Others reinvest the energy outward in sociopolitical actions such as working for justice, fundraising, or creating a memorial for the deceased.

Signs that a person is learning to accommodate their grief include:

  • A return to good health (or their health status before the death of their loved one)

  • Acknowledgment of the reality of the loss

  • Redefined identity

  • Emergence of new skills or roles

  • Establishment of or reconnection with a social support system

  • Ability to cope effectively with temporary upsurges of grief

  • Comfort with the quest to find meaning

  • Personal growth/transformation

Those who grieve the death of a loved one never truly "get over" the loss. Even after people accomplish the tasks of grieving, the pain of the loss is still present though hopefully less intense and more manageable.

Unique Aspects for Children

As noted earlier, children are often disenfranchised grievers because they are considered "too young" to understand what has happened. This is compounded when dealing with AIDS-RELATED deaths, another type of disenfranchised grief. The age, intellectual and emotional developmental stages, and circumstances of the loss will all affect the child's grief process. Wolfelt notes that initially children often experience shock and disbelief, then experience similar physiologic responses to adults: fatigue, changes in sleep patterns, appetite changes, headaches, tightness in the throat.29 They also tend to experience a wide variety of emotions and cognitive responses. One unique aspect of children's grief is regressive behavior (such as wanting to nurse, sleep with a parent, use baby talk, suck their thumb even though they have not exhibited such behavior for a while). Wolfelt attributes this to a desire to return to an earlier time when the child felt protected and secure.29 He also describes the phenomena of a child approaching their grief "in bits and pieces" -- crying or calling out for the loved one and then returning to play within minutes. This coping mechanism works well for the child but can be difficult for the family to understand.

Often children will "act out" in an attempt to get attention. Even if a child is not able to comprehend the loss, she can respond to the changes in the emotional status of the family.

Developmentally, children must come to understand that death is final, irreversible, inevitable, unpredictable, and universal. They must also perceive the concept of nonfunctionality and deal with causality.29 Table 16-3 (PDF) illustrates children's developmental stages, possible responses and suggested interventions.

Children dealing with AIDS-related deaths may be coping with the deaths of other family members or have HIV themselves. They are at risk for complicated grief because of the multiple disenfranchised nature of their grief experience. (See Chapter 12: The Care of Children and Adolescents.)

Support for the Bereaved

The palliative care team can provide support to the bereaved by acknowledging the loss, sharing memories of the deceased, normalizing grief responses, and encouraging good self-care.1, 14 To do so, the palliative care team should be familiar with the dynamics of the grief process and be able to identify healthy and unhealthy coping behaviors.

Immediately after the death, it is important to reach out to the bereaved, acknowledge the loss, and give permission to grieve. In AIDS-related deaths there may be conflicts among the biological and chosen families. The palliative care team should appreciate the perspectives of both families, without taking sides or judging their actions.2

After the death of a patient, families appreciate general expressions of condolence and sympathy. Telephone calls, cards, and notes are all appropriate responses from the health care team.

An acknowledgment of the death and expression of sympathy are meaningful, but another way the health care professional can help the bereaved accept the reality of the death (Worden's Task I) is by providing details and information about the illness, as appropriate. Many families do find it helpful to meet with the physician or members of the health care team after the death of a loved one to review the course of treatment or ask questions about the plan of care. The bereaved need reassurance and affirmation that they did everything possible to help their loved one and they did not hasten the death of their loved one (perhaps by administering the "last dose" of medicine or providing inadequate care). Malacrida reported survivors are often not satisfied with the information provided about the cause of their loved one's death.30 It appears that the communication and information provided to the bereaved by the palliative care team may also influence their bereavement recovery.31

Some people may not need, or want, further contact with the palliative care team. It may be a painful reminder of the illness and death, especially if they have not accepted the reality of the loss. Take cues from the bereaved before assuming they wish to remain in contact.

Educating about the grief process and normalizing appropriate grief responses can lessen some of the stress and anxiety experienced by the bereaved as they face Worden's second task of mourning -- experiencing the pain of grief. Often the image used to describe the grief process is that of a "roller coaster ride." This image highlights that those moving through grief do not necessarily feel better and stronger each day but experience "ups and downs" and "twists and turns" that are normal for the ride. The bereaved need to learn what typical physical, emotional, spiritual, cognitive, and social responses they can expect, but also be allowed to experience and express their own process.

  • Reassure them that it is normal to experience upsurges of grief related to significant days or events such as birthdays, anniversaries, and holidays, as well as some upsurges that will occur at random.

  • Educate them that anticipation of the significant day is usually worse than the day itself.

  • Encourage them to divert the energy from worrying about the significant day into making plans for how to spend the day.

  • Remind them that the grief journey takes as long as it takes; there is no time frame for grief.

Tables 16-4a (PDF) and 16-4b (PDF) suggest techniques for supporting the bereaved during the grief process.

Good self-care is a significant part of learning to adjust to the loss (Worden's Task III). Remind the bereaved the grief affects their entire person: physically, emotionally, cognitively, and spiritually. Encourage physical exercise (as appropriate), proper diet, and proper rest. Explore their spiritual responses to their losses and accompany them as they search for meaning. Know that they are not looking for external answers; they need to find their own answers, or learn how to live with the questions. Help them develop the creative aspect of their beings by encouraging them to keep journals or incorporate art and music techniques as part of working through their grief.32 Strengthen their support systems and be aware of the community resources in the area. Nord notes that "social support, community involvement, and fostering a sense of purpose are useful" in learning to accommodate a loss.33

At various points along the grief journey, it may be appropriate to encourage use of ritual. Van de Hart states that rituals can provide therapeutic expressions that symbolize transition, continuity, and healing.34 Therapeutic bereavement rituals are usually rituals of transition or continuity.2 Rituals of transition may relate to the separation of the loss or the transition to adjusting to life without the loved one. These symbolic actions may include writing letters to the deceased and then perhaps burning them, taking off a ring or melting it into another piece of jewelry, and putting away photographs of the deceased. Transition rituals may be most appropriate during Worden's Tasks I and II. Rituals of continuity may be related to the transformed relationship with the deceased as a new type of connection is established.2 These rituals may include visits to the grave, mentioning the deceased's name during a prayer, or creating a square for the AIDS quilt, and may be most effective during Tasks III and IV.

The elements of a ritual include the people involved, the symbols to be used, the ritual action and the characteristics of the ritual. The ritual, like the grief process, is a personal experience and must be created for the individual. It will arise from the circumstances, the personality, and the beliefs of the bereaved.2

It is possible to experience personal growth and positive transformation through the grief process. Trends indicate that people who are able to create meaning in the death, have a sense of connectedness with life, and are flexible in coping with change are likely to be positively transformed by their grief.26 Neimeyer builds his grief model on constructivism, asserting that humans need to find meaning and organize their lives around basic assumptions. The grief process can be a time to explore this more deeply.27

The health care team can help facilitate this process, recognizing that positive transformation develops as people move through the grief process and should not be expected within the initial grief response. Three questions can be raised to help the bereaved work on this transformation process:35

  • What do you want to bring from your old life into your new life?

  • What do you need to leave behind?

  • What do you need to add?

In summary, interventions suggested to help people coping with AIDS-related death include:

  • Reaching out to the bereaved

  • Giving the bereaved permission to grieve in ways that work for them

  • Normalizing responses to grief

  • Educating about the grief process and what to expect, especially during the first year

  • Encouraging good self-care

  • Referring for appropriate medical evaluation

  • Encouraging use of creative techniques such as keeping a journal, art and music

  • Encouraging use of ritual

  • Exploring spiritual responses, especially the search for meaning

  • Strengthening and encouraging use of a support system

  • Affirming efforts to re-engage in life

  • Helping the bereaved recognize opportunities for personal growth and transformation

In reaching out to the bereaved, the palliative care team may experience their own issues of grief and loss. This is a normal response; the important thing is to confront these issues separately so that one can be fully present to the bereaved in their time of need. It may be appropriate to cry with, or in front of, the bereaved as long as they do not have to comfort members of the palliative care team. Health care professionals have a responsibility to process their own grief work in order to be present to others who are grieving. Good self-care and identification of healthy, appropriate coping mechanisms are essential. (See Chapter 20: Care for the Caregiver.)

It is also important for the palliative care team to maintain a therapeutic perspective in reaching out to the bereaved. Remember:

  • No one can take away the pain of grief.

  • Don't let a sense of helplessness prevent outreach to the bereaved.

  • Recognize the value of "being present" to the bereaved.

  • Develop empathetic listening skills.2

In dealing with AIDS-related deaths, there are further challenges for the palliative care team. Mallinson notes that in addition to addressing grief issues, health care professionals must also address the concurrent stressors: substance abuse, mental health issues, and the effects of homophobia, racism, and stigmatization, and advocate for accessible services and community resources.1


Palliative care is a holistic approach to medicine that does not end with the death of a patient. Caring for the bereaved is a responsibility and a privilege. In AIDS-related deaths, the bereaved face significant issues that can complicate their grief process. Interventions that incorporate a holistic approach to grief and loss can facilitate the bereavement process, possibly improving the bereaved person's ability to function, reducing some of the pain experienced, and providing an opportunity for transformation.1


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