Preparatory Grief in Frail Elderly Individuals

When patients begin to realize that their lifespan is coming to a close and that they will soon lose all that they have known, they may begin to grieve, a process known as preparatory grief. While this is a normal process, it can cause considerable emotional distress in patients. At times, preparatory grief can overwhelm them, becoming pathological or triggering depression, yet healthcare workers often underestimate the emotional distress that terminally ill patients experience. This article defines preparatory grief, discussing the age-related changes and other factors that affect the end-of-life viewpoint, such as fear of the unknown and the need to accomplish various tasks; defines the role of the interdisciplinary healthcare team in caring for frail elderly patients who are grieving; and provides a guide to assessing and managing preparatory grief, including a protocol that may be followed to facilitate this.

In Western society, talking about death is often considered taboo. Healthcare in America is generally focused on curative measures, and many healthcare team members are uncomfortable with the topic of death because they consider it to represent defeat.¹ However, death is inevitable for all humans and becomes an imminent possibility in the frail elderly individual. The grieving process that people experience as they come to recognize their own mortality and impending death is known as preparatory grief. A patient’s journey toward acceptance that his or her life is ending can be complicated and often lonely, as healthcare providers routinely underestimate the emotional distress that their patients experience during this time.²

Examining Preparatory Grief

Grief is often conceptualized as the reaction to losing something or someone that is meaningful, but it is clear that the grieving process begins before the loss itself, as individuals become aware that the loss will occur. Both the patient and his or her family will experience grief as the patient nears the end of life. Just like the patient, family members may struggle to come to terms with the eventuality of their own death and eventual loss of their personhood, thus, preparatory grief has been defined as “the total set of cognitive, affective, cultural and social reactions to expected death felt by the patient and family.”^3,4 For the patient, the process begins when he or she realizes, consciously or sometimes unconsciously, that the amount of time he or she has left is limited. According to Mystakidou and colleagues, the patient must reorient or maintain life values, goals, and beliefs to accommodate this realization,⁵ which is perhaps the greatest challenge a person will ever face, as death poses a problem from which one cannot escape. Unlike any other experience, the realization that death is imminent taxes an individual’s psychological resources beyond his or her traditional problem-solving skills and may bring up issues from the past that are not resolved.⁵

Role of Age-Related Changes

As humans age, deterioration is inevitable. For frail older adults, aging has already brought losses, such as the loss of independence, mobility, bodily functions (eg, continence), and, almost certainly, some of the roles that they played in the family. It may have also brought the loss of a spouse, siblings, and other loved ones. Each loss foreshadows the ultimate loss and increases the realization that their lifespan is also coming to a close. During this time, individuals may grieve the changes in their physical or mental capacities or grieve the role changes that their chronic illnesses cause. They may grieve for small comforts, such as having coffee in the morning or listening to their favorite music.⁶ They may also grieve for the relationships that they will leave behind. Patients may look to the past, the future, or both. When looking toward the past, they may relive memories or grieve lost opportunities. They may also mourn the loss of what the future holds, such as the birth of a grandchild or a great-grandchild.⁷ Cicirelli identified a study by Johnson and Barer from 1997 that showed that the oldest-old often realize that they are near the end of life and experience a sense of the finitude of life.⁸ In addition, these individuals often recognize the importance of considering death as a part of living and the need to make decisions to prepare for death.

Factors Affecting End-of-Life Viewpoint

Although studies have shown that older adults tend to be less fearful of dying than younger adults, they have also shown that ear o death may be exacerbated in older, sicker patients in nursing homes.⁸ This may be because death is such a reality to them. Those who are dying often express one or more of the following four fears: (1) fear of the dying process or of the unknown; (2) fear of what will happen to their loved ones; (3) fear of abandonment; or (4) fear of the afterlife.^6,8 Addressing these fears can help patients work through the grieving process and come to terms with their own death. Measures for addressing these fears are discussed in the section on managing preparatory grief.

While death has an objective meaning, which is the cessation of all bodily functions, the subjective or lived experience of death will be different for each individual.⁸ A person’s subjective experience of previous losses and his or her reaction to these losses will shape the way he or she comes to terms with his or her own death. The worldview of the person and his or her spirituality also affects this experience. According to several studies, older adults are more likely to have a sense of spirituality that gives meaning to their perception of life, death, and, possibly, the afterlife. ^9,10 Their beliefs will vary widely based on their cultural and religious background, from believing that death is the complete obliteration of the person to believing that death is a phase in life and that reincarnation or the afterlife is the next step. Other factors that have been shown to influence the grief process are shown in the Table.⁴

According the developmental theory of Ira Byock, MD, a long-time palliative care physician and advocate for improved end-of-life care, the end of life brings seven tasks for the person to achieve: (1) a sense of completion of worldly affairs; (2) a sense of completion in relationships to community, family, and friends; (3) a sense of the meaning of one’s life; (4) the experience of self-love; (5) the experience of being loved by others; (6) the acceptance of the end of one’s existence; and (7) the willingness to embrace the unknown and let go.⁸ Completing these tasks may lessen the dying person’s fear and grief and bring about a greater acceptance of death.^1,8 Along with these tasks, there may be some “caregiving tasks” that the frail older person feels the need to complete, such as providing for individuals for whom he or she feels responsible (eg, spouses, children). Because women are more frequently caregivers, this need is expressed more often by women than by men.⁸

Role of the Interdisciplinary Team

The interdisciplinary team’s role in managing preparatory grief in frail elderly persons entails identifying grief; developing strategies to manage grief in the patient, his or her family, and among the patient’s care team; and recognizing abnormal grief that requires psychiatric intervention.¹¹ A protocol for the assessment and management of preparatory grief is found in the Figure.

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Assessing Preparatory Grief

Identifying preparatory grief can be challenging. All team members should be alert to expressions of sadness, anger, anxiety, or yearning for the past.¹¹ Patients may say things like “I’m not as I used to be” or “I don’t have much time left,” or they may express frustration at a loss that they have experienced (eg, loss of mobility); however, providers should be aware that watching for such expressions may not be enough. Mystakidou and associates found that healthcare providers often underestimate the psychological distress that their patients experience, with many patients remaining quiet about their distress unless directly asked.² Therefore, asking specific questions, such as “What are your thoughts about the future?” or “Have you been feeling sad or depressed?”, may facilitate dialogue with the patient, better helping to identify preparatory grief.

If the patient has recently undergone a loss (eg, the patient had to be moved to a care facility or has become incontinent), the care team should explore what this loss means to him or her by making observations (eg, noting that the loss must be difficult for the patient) or asking additional questions, such as “How do you feel about [your loss]?”. All members of the team, regardless of their role, should feel comfortable asking the patient questions and presenting the response to the team.

Although several tools have been developed to assess for preparatory grief, the usefulness and validity of these instruments is questionable. The Preparatory Grief in Advanced Cancer (PGAC) questionnaire was designed to assess for preparatory grief in patients with advanced cancer. Although many of the questions are general ones about grief, it has only been tested in patients with advanced cancer and may not be valid in frail elderly patients without cancer.⁵ Another tool, the Terminally Ill Grief or Depression Scale (TIGDS), was tested in an inpatient palliative care unit and the results were compared with the healthcare team’s perception of the patient’s emotional status.¹² Although the study’s findings validated the TIGDS, its validity must be questioned because Mystakidou and colleagues found that healthcare providers routinely underestimate the amount of grief that patients experience²; thus, further testing of this tool is required before it can be recommended to healthcare providers for use in general practice.

In assessing a patient’s grief, it may be helpful to understand the multiple stages of grief as differentiated by Elisabeth Kübler-Ross, MD, a pioneer in near-death studies. These stages include denial, anger, bargaining, depression, and acceptance, with people progressing through these stages at different rates.¹¹ People may also go back and forth between these stages or experience them in a different order.¹¹

Managing Preparatory Grief

Because managing preparatory grief requires team members to be emotionally available and to have a therapeutic presence, all team members need to have reflected on their reaction to death, the impact that death has on their psyche, and their subjective understanding of death.³ Team members should recognize grief as normal, not pathological, before approaching patients, as this is crucial in allowing the team to help patients recognize that their grief is normal.¹ While a formal assessment of the patient will likely fall to the physician, nurse practitioner, or psychiatrist, once preparatory grief is identified, most of the interventions can be performed by any and all team members.

Listening to the patient is a simple but critical intervention. Patients should be allowed to express their emotions and be free to grieve. When interacting with the patient, Periyakoil and Hallenbeck suggest the acronym RELIEVER to guide the provider’s approach⁶:
Reflect—mirror the patient’s emotions;
Empathize—empathize with the patient and acknowledge that this is hard for him or her;
Lead—use guided questions to help facilitate the grief process (eg, “What concerns do you have about how your loved ones will do after you are gone?”);
Improvise—respect the patient’s emotional boundaries and offer support within those boundaries. The physician’s approach must be tailored to individual patients;
Educate—explain that grief often comes in waves. Let patients and family members know that people grieve in different ways. Explain that anger experienced by patients and families is a normal response;
Validate the
Experience—reflect to the patient the normalcy of the experience;
Recall—assist patients in talking about past experiences and reviewing their lives.

An appropriate time to help patients find ways to cope with their grief is while a life review is being conducted, as this affords an opportunity to discuss patients’ personal and social resources. Talking about ways that they have coped in the past and what has worked for them empowers patients to find their own strengths.² Although all team members can ask patients about their lives and memories, a formal life review may best be suited to a therapist or trained nurse. A formal life review is helpful for all older adults, but especially for those identified as struggling with preparatory grief.

While many healthcare workers think that talking openly about death will upset the patient, doing so often relieves the patient’s anxiety.^3,13 It is important to give the patient accurate information about his or her condition and about the dying process. Team members should discuss the dying process with the patient and reassure him or her that he or she will have medical and nursing support to manage the physical symptoms. Practical concerns such as the patient’s advance directives and organ and body donation preferences should also be discussed, but this is likely best left to the social worker.^3,6

Depending on the patient’s cultural and religious background, incorporating religious or cultural rituals specific to his or her beliefs and traditions may be helpful.^6,14 If a spiritual advisor or officiant is not already a part of the interdisciplinary team, offering access to such an individual may be comforting to patients. Individuals from a Roman Catholic or Anglican/Episcopal background, for instance, may desire to confess, receive Holy Communion, or be anointed.¹

It may also be helpful to assess patients’ fears so that interventions can be developed to address those fears. Patients who fear abandonment may be reassured by the presence of a team member.^1,3,5,6 The presence of family members and other caregivers should also be encouraged and supported. Those who fear the unknown can be educated about the dying process, and alternative calming therapies such as massage, art therapy, music therapy, and guided imagery may also be used to help reduce anxiety.⁶ Individuals who worry about what will happen to their loved ones once they are gone may benefit from planning sessions that address what will happen to their families in the future. Such sessions may include an official ceremony of passing down “leadership” in the family, discussion of financial arrangements, or discussion of advance directives and end-of-life care. Those who fear the afterlife may benefit from interaction with spiritual caregivers.^6,14 Cognitive-behavioral therapy, psychoeducational therapy, and supportive group therapy are more specialized interventions that can be included in the patient’s plan of care if these resources are available.² Currently, the evidence on the usefulness of these therapies in managing preparatory grief is limited.

Pharmacologic agents are generally not helpful in alleviating uncomplicated grief, and some agents may be detrimental in this setting. For example, benzodiazepines should be avoided, as they can promote and intensify denial and delay affective and cognitive processing that death is imminent.⁶ However, pharmacologic agents targeted towards alleviating distressing physical symptoms can be beneficial, as such symptoms may otherwise impede the process of grieving.

Identifying Abnormal Grief

Along with identifying preparatory grief, the provider has to be able to distinguish normal grief from pathological processes.¹¹ Depression decreases the patient’s quality of life, impairs his or her ability to progress through the grieving process, and complicates palliation of other symptoms.⁶ Differentiating between preparatory grief and depression can be challenging, as they may present similarly in the dying person. Somatic signs of depression, such as weight loss, sleep problems, and sexual dysfunction, may be due to other disease processes and are not always reliable in identifying depression in this population. The affective signs of depression, such as sadness, crying spells, and thoughts of death, may also be a part of preparatory grief. Despite similarities between preparatory grief and depression, there are also key differences, and it is important to differentiate between a normal grief reaction and a mood disorder.^5,6

According to Periyakoil and Hallenbeck, preparatory grief is marked by temporal variation, with sadness experienced in waves.⁶ The feelings may be intense for a period of time, but then decrease in intensity. In contrast, there is a flat affect with depression and continual baseline sadness that affects all areas of the patient’s life. Anhedonia, the lack of pleasure in things that used to please, is a hallmark of depression. In cases of preparatory grief, the person is still able to take pleasure in activities and interaction. While thoughts of death will be present in individuals experiencing preparatory grief and depression, active thoughts of suicide, desire for an early death, or the belief that one would be better off dead are hallmarks of depression. In addition, while individuals who are experiencing preparatory grief may detach themselves from the world around them and the relationships that they have, overall, they still respond to support and need social interaction to help them through the grieving process. In fact, social interaction enables them to tolerate the pain of loss and achieve the last developmental tasks of achieving a sense of completion in relationships and the experience of being loved by others.^1,6

When patients begin to come to terms with the reality of their death, they may feel overwhelmed and lose hope that they will be able to cope with the situation.^5,6The concept of hope and hopelessness in preparatory grief can be difficult for team members to understand. While there may be elements of hopelessness at certain stages of grief, a complete loss of hope is an indicator of depression. Although patients may come to give up the hope of living forever through the grieving process, they need to be encouraged to not give up hope altogether. The goal should be to reassign the object of hope, which may become comfort, a peaceful death, the resolution of life tasks, or an entrance into the afterlife.⁵

Patients experiencing depression have a negative self-image, often feeling worthless and as though their lives are meaningless. Delusional guilt or an active desire for death, including thinking about ways to end their lives, are signs of depression.⁶ These desires are disconcerting and serve as roadblocks to attaining the life tasks of achieving a sense of the meaning of one’s life and the experience of self-love.^1,6

While preparatory grief is a normal process for the frail older adult, there are times when the grief overwhelms the person’s coping mechanisms and may become pathological. Depression may be superimposed upon preparatory grief and obstruct the process. When this occurs, the patient requires intervention to manage the depression so that the work of grieving can continue.^5,6

Patients who are found to have depression will likely require pharmacotherapy along with psychosocial interventions. When considering antidepressants, it is important to consider the patient’s probable life expectancy, as most antidepressants require up to 6 weeks for full effect and need to be slowly titrated in the elderly. Selective serotonin reuptake inhibitors typically have a shorter onset and fewer side effects than tricyclic antidepressants. If the patient is anticipated to live only a few days to several weeks, psychostimulants such as methylphenidate or dextroamphetamine may be the most useful agents, especially for those with psychomotor retardation; however, psychostimulants should be avoided in agitated patients.⁶

Future Research

There are many gaps in the literature on the assessment and management of preparatory grief, and more research in this arena is needed. Current tools for the assessment of preparatory grief require further testing, and new tools may need to be developed. Much of the literature on preparatory grief has focused on patients with cancer and younger patients with a newly diagnosed terminal illness. While some of the information may be applicable to frail elderly adults, much more needs to be explored about the lived experience of these individuals, the meaning of death to these individuals, and the ways in which these individuals can be best supported during the last stage of their life journey.

Conclusion

Although many people are more familiar with the developmental stages of early life, from childhood through early adulthood, humans continue to develop throughout their lives, both emotionally and physically. While managing the multiple chronic illnesses of frail elderly persons, caretakers may forget to consider the emotional state of these individuals, yet understanding and recognizing the psychological development and grief processes that occurs at the end of life can significantly improve the care that these individuals receive. Team members may be hesitant to initiate discussions of death and grieving with their patients, but doing so may alleviate anxiety and allow patients to express their feelings. In addition, recognizing “the elephant in the room” decreases the discomfort experienced by both patients and team members and allows for open communication.

Team members should be sensitive toward and aware of their own reaction to death and the grief that they may experience following the loss of a patient. Acknowledging grief, normalizing reactions, and being present as an empathetic listener go a long way toward assessing and managing preparatory grief.^1,6 While it is crucial to recognize grief as a normal process at the end of life, it is also important to identify when grief has overwhelmed the patient or when depression is complicating grief. Monitoring patients for a flat affect, continual sadness, anhedonia, hopelessness, and a negative self-image can help identify depression. When such symptoms are noted, they should be treated to ensure better quality of life for the patient and allow him or her to continue with the grieving process.

The author reports no relevant financial relationships. Ms. MacKenzie is a doctoral student, School of Nursing, University of Pennsylvania, Philadelphia, PA.

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