HFA Teleconference - 2007 Segment Summaries
Living with Grief: Before and After Death
Segment 1
The Dying Process: Understanding Anticipatory Grief and Anticipatory
Mourning
1. The concept of anticipatory grief has a checkered history. However, it is important to acknowledge that within the course of an illness, patients, families, and caregivers experience a range of losses. In some cases, the anticipation of loss can result not only from illness but also from other circumstances. Such circumstances could include the potential for loss as a result of war or violence.
2. These losses should be acknowledged and validated by caregivers – allowing patients and families to explore the effects of loss and reactions to the illness.
3. For many patients and families, the later phases of illness can be a precious time used to re-energize conversations and relationships, leave a legacy of values to those who remain, meaning-making, and a revitalized spirituality. In working with patients and their families, it is important to validate the grief experience while also acknowledging the strength and resilience of families and to allow patients and families to set their own agendas.
4. In working with dying patients and their families, professional caregivers have to begin with a commitment to stay throughout the illness and allow patients and families to confront whatever issues they wish – offering options such as life review or discussions of end-of-life preferences. Caregivers also should educate families about the likely course of active dying.
5. At the moment of death, families should be supported by providing companionship, allowing and validating grief, opportunities for ritual, and assisting families with options as they plan final details.
6. After the death, funerals or other rituals or memorial events can be important for families and friends to witness the life and death of the person who died and participate in personalized rituals that allow the involvement of the community in honoring the relationships and legacies of the person who died.
7. Even though grief may be experienced through the course of the illness, it does not mitigate the fact that families and friends may experience a range of grief reactions after the death.
Segment 2
Grief: New Insights and Developments
1. Our understandings in grief have changed in a number of significant ways in the past two decades:
- From universal stages to a recognition of personal pathways;
- From relinquishing ties to revising and renewing relationships;
- From viewing grief as affect to recognizing the multiple and multifaceted reactions that persons have toward loss and the ways that responses to grief are influenced by culture, gender, and spirituality;
- From passively coping with loss to seeing the possibilities of transformation and growth in grief;
- From seeing grief as an individual problem to viewing it as a relational issue.
2. Many of the current models of grief now recognize that grief does not merely involve reaction to loss and change but also includes actively trying to live life after a significant loss. In enabling clients to explore both the reactions and challenges posed by loss, caregivers need to offer permission for grieving individuals to explore the multiple meanings of the deceased person’s life, death, and relationship to the survivor and to create opportunities to reconstruct stories and memories of the deceased that allows survivors to recover the sense of joy and humor in the relationship without denying the reality of death.
3. There is a body of research that indicates that although the majority of persons are resilient in the face of loss or adapt to loss after an initial period of distress, a minority (perhaps 10-20%) may experience debilitating and disabling forms of grief that are chronic and complicated. At present, there are efforts to formulate a diagnostic category for complicated or prolonged grief in the DSM-V that is distinct from depression and anxiety reactions. It is important to recognize that this diagnosis cannot be determined for at least six months after the loss, so it is critical not to overly interpret or pathologize grief. However, certain “red flag” behaviors or reactions such as dependency n alcohol or drugs, self-destructive behaviors, behaviors destructive to others, deteriorating sleep patterns, or physical problems should be immediately referred to a qualified specialist.
4. These reactions that are found in complicated or prolonged grief should be distinguished from factors that complicate loss such as multiple loss or highly ambivalent relationships as well as situations where individuals can experience surges of grief such as holidays, special events, or different life stages where individuals review earlier losses.
Segment 3
Implications for Practice
1. Grieving is a process of moving from losing what you have to having what you lost. Even as caregivers assist individuals to acknowledge loss, caregivers also have to find ways to enable them to utilize intrinsic and extrinsic strengths and to celebrate the life of the person and the survivors’ experiences of growth.
2. Each human service professional has a unique role in assisting grieving individuals. Every human service professional should seek to determine effective ways to incorporate these new insights and theories within their professional roles and situations and reassess and reinvent ways they respond to loss. Each professional has unique opportunities to validate grief, offer options, energize natural support systems, and to generate and to encourage reminiscence and meaning making.
3. Effective interventions invite remembering, revisiting, retelling, and restoring a sense of personal meaning that can be projected into the future. In addition, support should be at multiple levels – assisting with all aspects of loss from the emotional to the physical.
4. Theoretical Models can be helpful in so far as they assist caregivers to understand their clients’ reactions and coping or assist clients in making sense of their own experience. Effective counseling looks to guiding principles rather than rules or rigid protocols. Evidence suggests that there is no one model that should uniformly applied to all situations of grieving but rather professionals can draw from many models and approaches as they assist clients adapting to loss and changes that accompany death.
Segment 4
The Importance of Self-Care
1. End-of-life care can be stressful for caregivers. Often caregivers may encounter a variety of losses as well as issues of counter-transference as caregivers simultaneously experience and contain their grief.
2. Individual strategies of self-care should incorporate acknowledgment of loss either in conversations with other caregivers, group rituals, or in creative expressions of loss. Caregivers can benefit as well from effective life-style management with clear rules for respite, a realistic philosophy of one’s role, and a resilient spirituality.
3. End-of-life organizations need to learn to support staff and to create caring structures to provide ongoing supervision, training, and education and offer validating, affirming rituals. All of these activities should reaffirm the possible stress and loss inherent in working with persons who are dying and grieving, as well as the importance, meaningfulness, and rewards of such work.
