Ms. Polk reports that although she's physically comfortable, she feels anxious, frustrated, and helpless, adding, “I know I'm dying, but there's so much to do. I have a lot to apologize for—things left undone or unsaid.” The nurse inquires, “Would you like to talk about it?” By listening to Ms. Polk, the nurse begins to identify her end-of-life goals. “I want to apologize to Patrick for making him grow up too fast,” she says. “I want to clear things up so that Patrick and Christina don't fight over my things after I'm gone.” She'd like to see them become close again, she says. She adds although she's not afraid to die, she is afraid of physical pain and of leaving her affairs “in a mess.” The nurse reassures her that the physical pain will be controlled, then asks, “How else can we help?” and agrees to return the next day.

The next morning Ms. Polk seems more relaxed. On her previous hospital admission, a social worker inquired about establishing an advance directive, a designated health care surrogate, and a do-not-resuscitate (DNR) order, and raised the issues of estate planning and hospice care. At the time, Ms. Polk didn't want to discuss these matters, but now she asks the nurse to schedule a meeting with the social worker. She also says that her children will have a difficult time with her dying, and she needs some suggestions in how she can help them through it. The nurse explains that knowing what to expect as death approaches often helps, as does being involved in a loved one's care. Further, she discusses bereavement education and counseling and provides literature on such services. Ms. Polk asks the nurse whether she would be willing to talk to her children, and she agrees to do so.

During Christina's next visit, the nurse encourages her to ask about her mother's care and the dying process, and realizes that Christina knows neither what to expect nor how she can help. The nurse describes the various changes likely to occur as death approaches, and when Christina declares that she feels helpless and guilty for being unable to care for her mother at home, the nurse replies, “Many family members feel as you do. But I notice that you're very attentive to your mother and that when you're here she's more relaxed, her breathing is less labored, and she seems more peaceful.” Christina seems relieved to hear it.

During the next several days, Ms. Polk completes several “life closure” tasks, including establishing an advance directive, naming Christina as her health care surrogate, and signing a DNR order, after which she appears calmer. The nurse schedules 15-minute daily visits with Ms. Polk, giving her the chance to talk about what's most important to her. During one visit, Ms. Polk says how much she misses her son and wants to speak with him. With her permission, the nurse calls Patrick and encourages him to call, which he begins to do every night. Although he still feels hesitant to visit his mother, the two have several substantive discussions, and Ms. Polk says she feels forgiven.

During the next visit, Ms. Polk talks about wanting to make peace with God. The nurse asks if she'd like a clergyman or a counselor to visit, and Ms. Polk says that she would. The nurse contacts a local hospice, and a hospice chaplain and counselor are brought in. The chaplain visits several times, hears Ms. Polk's confessions, and performs the Sacrament for the Sick. The hospice counselor talks with Christina and Patrick also, giving them additional emotional support.

One evening, as Ms. Polk's death becomes imminent, she asks to see the sunset, and the nurse and Christina take her outside after supper. Mother and daughter talk quietly, expressing their love for each other and their mutual gratitude. As she returns to her room, Ms. Polk thanks the nurse for making possible this special time. In anticipation of the patient's death, the nurse proposes that Christina stay in her mother's room that night. A cot is brought in and she sleeps near her mother, holding her hand. Ms. Polk dies in her sleep early the next morning. The hospice counselor helps with funeral arrangements and later calls Christina and Patrick to offer emotional support.

The nurse attends the memorial service. Afterward, Patrick tells her that he's feeling shock, disbelief, sadness, and guilt, and that he believes his mother has “gone to a better place.” The nurse talks with him about grief and bereavement care, promises to send him educational materials, and suggests he consider attending a support program offered by a hospice. She also encourages him and Christina to be mindful of their needs for sleep, hydration, and nutrition and to avoid alcohol, sugar, and caffeine. Later, she tells them, “Your mother was extremely proud of the people you've become. She told me that she believed she would live on through your accomplishments.”

On the first anniversary of Ms. Polk's death, the nurse receives a card from Christina and Patrick, thanking her for the good care their mother received. They have found comfort in their communities, Patrick through volunteer work with the American Lung Association and Christina through participation in a hospice bereavement group.

THE EXPERIENCE MODEL OF CARE

The Experience Model of Care views grief and bereavement in the following ways:

* It accepts grief and bereavement as normal, not pathologic.

* It guides patients and families through “life closure and completion” tasks that imbue emotional strength and impart greater meaning.

* It employs preventive as well as standard interventions, with the goal of providing bereavement care to family and friends before the death of a loved one, thereby averting the development of complicated grief.

* It focuses on the survivor as the most important person in the provision of care.

* It challenges providers to think “interdimensionally” and to address all aspects of the survivor's bereavement. It is particularly sensitive to how changes in one dimension (or area of life) influence changes in all others.

BEREAVEMENT AND TYPES OF GRIEF

Several types of grief have been identified, and it's important that nurses recognize and distinguish among them. Previous or concurrent losses—regardless of whether and how acknowledged or supported—can determine the types of grief patients and families experience. And how well grief resolves depends largely on the support available to survivors.

Anticipatory grief occurs before a death, usually at the time of diagnosis. A patient may anticipate loss of good health (and in some cases a body part), independence, financial stability, cognitive ability, autonomy, and life itself. Family members, friends, and caregivers may grieve for the patient's losses as well as for their own.

Anticipatory grief may have some benefit, but it doesn't necessarily lessen a survivor's grief. It can provide time to acknowledge that the patient is dying, to prepare for the death, to adapt to changes that will occur as the patient loses function, to participate in a review of life, to tend to matters left unsettled, and to resolve conflicts. Family members and friends can begin to prepare for life without the patient by adjusting to new responsibilities (or the absence of them) and developing new skills. After a death, an aunt may become her niece's guardian, or a widow or widower may need to learn to drive or cook, for example. Assessment of the needs of family and friends in bereavement care should begin before the patient's death, ideally, from the time of diagnosis and throughout the illness. When families are prepared and support services are used before the death, healthy adaptation during bereavement is more likely to occur.

It's important to remember that changes in one area of life effect changes in all. Fear and worry are typical intrapersonal (emotional and cognitive) responses to the death of a life partner, for example, and something as commonplace as balancing a household account (or another such functional challenge) might elicit them. Physical responses include elevated blood pressure and sleeplessness. Fear might be manifested socially in extreme shyness or rudeness, affecting interpersonal relations. The survivor may wonder why God has deserted him (a spiritual consideration). Similarly, an intervention undertaken in one area of life (such as teaching an elderly widow to balance the checkbook) can favorably affect the others.

Bereavement care must entail respect for the survivors’ wishes and their ways of coping with loss. Listening attentively and responding to survivors’ identified needs are ways of demonstrating respect. Examples of the latter include remaining fully present when a person expresses grief, even if the form or intensity of expression is disconcerting, and facilitating the performance of rituals that differ from those of one's own background.

* a loved one's death is sudden (as in cases of suicide, homicide, or accident).

* the survivor and the deceased were estranged or relations were strained.

* a child dies.

* the survivor has had more than one loss.

* the survivor has unresolved grief from previous losses.

* a loved one suffered greatly at the end of life.

* the survivor lacks adequate support.

* the survivor's grief is so intense that he cannot function as he would normally or accept that the relationship has ended, or both.

Chronic grief begins as normal grief, but instead of subsiding continues for an excessively long period of time. What's excessive in one person may not be in another, and determination should be based on knowledge of the survivor (gained by listening to his account of past losses and how he has adjusted to them). Some people may begin to define themselves by their losses (a man might refer to himself at all times as “Samantha's widower,” for example), contributing to the development of chronic grief. In general, if a survivor is troubled daily by strong and static thoughts and feelings for an unusually long time, additional intervention may be required. Discuss your observations with a mental health professional to determine whether referral is necessary.

Early and ongoing bereavement assessment—beginning with diagnosis and continuing throughout the illness and after death—and a collaborative process are essential components of a preventive approach to bereavement care.

* a sense of completion of worldly affairs (fiscal, legal, and social).

* a sense of completion in relationships to community, family, and friends.

* a sense of the meaning of one's life.

* the experience of self-love.

* the experience of being loved by others.

* the acceptance of the end of one's existence.

* the willingness to embrace the unknown and let go.

If a patient's family members are unable to act as caregivers (because of age or infirmity, for example) or have limited access to support (because they live in a rural area, for example), greater advocacy efforts and team involvement may be required of nurses. An assessment of resources available—in community support and bereavement care—may be warranted.

Survivors who have acted as caregivers may develop exceptional inner strength as a result, yet this strength is often overlooked. Nurses working with patients and families in long-term, custodial, and acute care settings should be especially sensitive to this possibility. Speaking of caregiving only in terms of hardship (“stress” and “burden”) can hinder grieving, but when it's spoken of in terms of gains (in “courage” and “skills developed”), it can help survivors to find meaning in the care they've given.

Long-term support is sometimes warranted for survivors. (Hospices usually provide such support for at least a year, and sometimes longer.) In addition to bereavement counseling and peer support groups, survivors may benefit from nursing support available by e-mail, mail, and telephone, as well as from educational literature.

STANDARD APPROACHES

Helping survivors through bereavement can entail normalizing their grief, encouraging them to identify and express feelings, helping them acclimate to life without the deceased, allowing or creating rituals, providing education, and distinguishing complicated grief from normal grief. Remember that a person's response to death will be shaped by culture, experience, personality, and coping skills.

Normalizing grief. Many survivors fear that they will never be free of the pain of loss and that their responses to it are abnormal. For example, a woman who loses her partner to breast cancer might report trouble sleeping and find herself unable to concentrate on her work. Hearing from the nurse that such responses are to be expected will help her to understand that her grief is normal, as will hearing that there is no single “right” way to grieve.

Encouraging expression. By actively listening and conveying respect and compassion through tone of voice and body language, a nurse can encourage survivors to identify and express their feelings. This can alleviate stress and, in some cases, allow for thoughtful problem solving.

Offering comfort. Although the desire to comfort others is natural, knowing how to do so is an acquired skill. No two people, not even two survivors with similar experiences, will grieve in exactly the same way. It's important not to compare a survivor's experience of loss to your own or to those of others. Avoid such comments as “I know how you feel.” Open-ended engagement that invites response, such as “Tell me how you feel,” is best.

Nurses often want to “fix” situations and eliminate pain. Although these desires are common, it's impossible for a nurse (or any health care professional) to fulfill them. In fact, efforts to remove emotional pain can hinder the grieving process; pain is a necessary component of grief.

Helping survivors to acclimate. Encouraging survivors to talk about life without a loved one serves at least two purposes: helping them begin to accept the loss emotionally and planning for and responding to changes in social or financial status.

Survivors often ask “big” questions, such as, “Why did this happen?” “What is the meaning of life?” “What purpose does my loss serve?” and “What is God's role in this?” There are no simple answers. It's not unusual for survivors to embrace, confront, or reject their spiritual beliefs, question their lifestyles, and express intense emotions that can range from unbridled exuberance to utter hopelessness. Often, the nurse is most helpful by listening actively, but ultimately, each person must grapple with these questions on his own.

Rituals and traditions. These can serve to acknowledge a loved one's death and may take the form of funeral and memorial services. Later, more private rituals may include visiting the grave, planting a tree in remembrance, and observing moments of silence. In some hospitals, staff members have created “memorial books” in which they record their memories of deceased patients and comment on their relationships to them.

Providing grief education. Grief can take months or years to resolve, and some people may never complete the process. Explain to survivors that grief and grief-related symptoms may resurface or become more intense on holidays, birthdays, the anniversary of the death, and any other dates that hold significance.

Referral to supportive resources. Although nurses should know how to assess for grief and implement preventive and supportive care, it's equally important to know when to refer to specialists. Many communities provide bereavement care that is readily accessible and of high quality to people anticipating or surviving a death. Hospice organizations may be helpful in either providing these services or offering referrals to them. Bereavement services include

* individual, family, or group counseling.

* specialty counseling (directed toward children or survivors of homicide or suicide, for example).

* education (through Web sites, printed material, and community forums).

* retreats.

* community memorial services.

In a survivor with symptoms of exaggerated grief, the initial focus will be on ensuring his safety, and the plan of care may include close or constant supervision, inpatient or outpatient psychiatric care, and treatment for substance abuse. In survivors with masked grief, bereavement care aims to promote healthy interdependence and independence, for example, by teaching them how to set “boundaries” with others. For example, if a survivor whose spouse had done all the driving becomes overly dependent on a family member for transportation, teaching him how to use public transportation will decrease his dependence.

In people with disenfranchised grief, bereavement care may entail acknowledging the relationship and the loss, as well as providing opportunities to honor the memory of the loved one. It's important for nurses to acknowledge and address social stigmas and legal barriers. For example, the nurse might say to a gay man whose partner has died, “I know you expected to grow old with him.” In the case of a survivor estranged from the rest of his family and therefore excluded from funeral and memorial services, the nurse might help create a ritual that honors the survivor's relationship to the deceased.

SELF-CARE OF PROFESSIONALS

Though death is a daily occurrence in many health care settings, nurses and other providers may find the deaths of certain patients emotionally wrenching. And when a nurse is exposed to death frequently, it can be even more difficult to resolve grief; she may not have finished grieving for one patient before another dies. This may be trying to new nurses.

It's important to find ways of supporting yourself. Your colleagues and peers may be able to help you adapt to repeated loss. If they can't, look for other sources of support, such as a mentor, a friend, or a community leader. In some cases, when losses accumulate, a nurse may show symptoms of posttraumatic stress disorder, the treatment of which requires mental health consultation. Most work settings offer access to such professionals through an employee assistance program.

Sixty-nine caregivers employed at seven of the 10 hospices responded; one-third identified themselves as RNs, one-third as certified nursing assistants, and one-third as “other.” “Positive reappraisal” (reinterpreting an event in a favorable light) was the coping strategy most frequently used; 85% of respondents said they used prayer, suggesting that for many hospice workers the death of others is seen as an opportunity for spiritual growth. Employees dissatisfied with their end-of-life experiences reported using confrontational coping styles, tended to accept greater responsibility for patient outcomes (suggesting a greater need to exercise control), and used escape and avoidance strategies to deal with the stress of caring for dying patients. Strategies that attempt to control the dying patient's circumstance are incongruous with best practice, and they also cause greater stress. Evans and colleagues’ findings suggest that among nurses, chronic stress can result in burnout, poor health, and poor patient outcomes. They also suggest that professional caregivers such as nurses may benefit from support offered through inservice training and environmental interventions (the creation of quiet areas where staff members can congregate informally, for example).