Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Living with Grief, Rebuilding a World

Phyllis R. Silverman, PhD

[Citation: Silverman, PR. Living with grief, rebuilding a world. Innovations in End-of-Life Care, 2001;3(3), www.edc.org/lastacts]

In this issue of Innovations, we look broadly at the experience of bereavement and at how health care institutions might respond. In so doing, we are implicitly expanding the population that health care professionals in end-of-life care usually consider to be the focus of their care. Indeed, we are acknowledging that end-of-life care must be family-centered, and that the dying patient and the bereaved family (as defined by the person who is dying and/or family members) must be seen as the unit of care. When we talk of bereavement and what happens to survivors after people die, we must include not only those who are grieving losses from long term illnesses, such as cancer, but also those who are grieving sudden, unanticipated deaths caused by disease, suicide, accidents, murder, and sometimes war. We also need to keep in mind that even when a death is anticipated and some grieving occurs beforehand, once someone has died, another process is set in motion for the bereaved. As mourners begin this journey, they learn to live with the fact of death, and all that this means for their ongoing lives.

Grief touches people socially, emotionally, physically and spiritually and can have far-reaching and unanticipated consequences. Rarely is there is a single mourner; many lives are changed by most deaths. The pain of loss may be tempered by time, but time does not heal. The bereaved do not recover, in the sense of returning to life as it was before the loss; rather, they make an accommodation to their new situation, and this accommodation will continue to shift as they change over time. People visit and revisit the loss so that, in time, they "run the pain, it no longer runs them."¹ Ultimately, I see the process of living through grief as a process of finding a new sense of self and a new place for oneself in the world. I also view the nature of grief within a developmental and relational framework. Applying this framework to the clinical practice of providing bereavement support calls some current models of care into question and gives more robust support for others.

In this issue we spotlight two hospital-based efforts to improve the care of bereaved family members. Both hospital-based efforts represent an attempt to take responsibility for the families' needs for bereavement care seriously. St. Vincent's Hospital and Health Care System in Indianapolis has taken a proactive approach in its recently developed bereavement care track. Three striking elements of their program are: 1)They capture all deaths that occur in the hospital system and reach out to all bereaved families, regardless of whether the death was anticipated or not. 2) Staff and volunteers reach out to bereaved next of kin proactively by initiating phone calls at one month, three months and six months after the death, in addition to mailing brochures and written materials to the families. 3) The volunteer network is made up of staff, often those who were involved in the care of the dying person before that person's death, allowing staff the opportunity to follow-up with these families.

The second effort we are spotlighting is the University of California at San Francisco (UCSF) Children's Medical Center's Family Bereavement Retreat. First held in 1994, this effort is grounded in the philosophy that the health care professionals who care for a dying child are in a position to offer support to families after the child dies, due to the ongoing relationship that has developed over the course of the child's illness. By pairing the health care professionals with outside bereavement experts to co-lead groups which support grieving parents and siblings, this intensive weekend retreat can be healing for all involved.

For much of the twentieth century, theories of grief and the research associated with it focused on the mourner's intrapsychic or emotional reactions to the loss, with the major focus on identifying problem behaviors that might result.² Following a model attributed to Freud, the bereaved were encouraged to "decathect" from the "object," i.e., to let go of their attachment to the deceased, as if they could have only one relationship at a time.³ During this same time, the field of human development focused on how people achieved separation and individuation. This perspective sought causes for maladaptive behavior in the events of the individual's early life, ignoring the fact that human experience rarely unfolds so simply.

This theoretical stance has led to what can be described as an illness or a deficit model of grief and bereavement. Bereavement counselors often describe grief as something mourners will "get over," as with an illness from which one recovers with the appropriate treatment. This approach is reflected in the vocabulary available for describing the direction grieving should take. Clergy, health care professionals, friends and now the media when they report on survivors of disaster, talk of a "time of healing," of "getting over it," of "working it through," and "finding closure." Yet, for many who grieve, this vocabulary does not match their experience. In his Personal Reflection in this issue of Innovations, David Browning, a social worker specializing in bereavement work, shares his 35-year sojourn through grief at the loss of his mother when he was just thirteen. As he notes, "It was the notion of saying goodbye that I had trouble with." Similarly, in the second Personal Reflection, Danish Chaplain Christian Busch describes his work with a grieving mother and how she found a way to express her feelings about the loss of her son. This mother does not use the language of letting go or closure, but rather speaks of creating a healing story that allows her to hold on to her memories of her child and her love for him.

When the bereaved are unable to achieve the sense of closure expected by those around them who believe their grief should "resolve" and be completed, the bereaved can feel defective and stigmatized, as if something must be wrong with them.

The focus on the resolution of grief is often accompanied by a message that a lack of resolution could lead to serious emotional problems or psychiatric illness. Currently, there is a serious movement to develop a new category for DSM IV, called Traumatic Grief.⁴ A small minority of people who have experienced a loss may, in fact, suffer from such a syndrome.⁵ However, if this initiative succeeds, it will have serious repercussions for how we consider the bereaved—they become persons who are suffering from a psychiatric diagnosis or a condition eligible for reimbursed services from mental health professionals. There may be a benefit here for some in making services thereby available, but I believe we need to consider what it means when predictable, expected aspects of the life cycle experience are called "disorders" that require expert care.

The approach that I am proposing here is grounded in an understanding that our values, attitudes and beliefs about death and bereavement are not fixed in stone, but are responsive to and modified by dynamic historic, economic and social forces.⁶ French cultural historian Philippe Aries described how significant changes in attitudes and values have led to new understandings of death and of grief over time.⁷ His work offers evidence of the socially constructed nature of attitudes about death. Practically speaking, this means that what is expected of us as mourners and what we expect of others who mourn with us varies across time, place and culture.

A relational and developmental lens focuses both on the relationship that is lost and the changes that ensue from this loss. It assumes that the mourning individual's sense of self is integrally linked to the relationship with the deceased. One's experience as the parent of a particular child, for example, continues to shape one's sense of self, even if that child dies. Relationships with others frame our sense of self and how we live our lives. To understand the ripples set off by an individual death, we need to ask who the deceased was, and what role he or she played in the lives of those who are mourning this. This emphasis on relationship as central to individual development is consistent with earlier sociological and psychiatric work⁸ and has gained new importance in light of research focused on women's experience.^9,10 This recent work has focused on the importance of relationships in girls and women's lives and has contributed to the articulation of a new goal of human development – one that values mutuality and interdependence rather than autonomy and independence. This perspective now informs our understanding of all human experience, not just that of women.

Some losses require the bereaved to assume new, often unwelcome, roles, e.g., "widow," "orphan," or "single parent." In these new roles, the bereaved must not only grapple with grief, but also find new ways of living in the world given this changed situation. Habits of daily living are irrevocably changed and cannot be reconstituted as before.

Facing new challenges can be the impetus for development that involves new ways of understanding one's self and the world.¹¹ Change takes place on many levels. On one level, the bereaved find new ways of relating to themselves and to others. They may see themselves as more sensitive to others, or appreciate life differently. Values and attitudes often change. They begin to develop new stories about themselves, new ways of living in the world, of making meaning, of listening and of feeling heard. One way of putting this is that they develop a new capacity to be audience to their own performance and to their relationships with others.¹² David Slavitt, poet and novelist, whose mother was murdered in 1982 has written about the ways inconsolable grief can become a new identity. He suggests that health care professionals resist the temptation to intervene and attempt to cure grief, but rather work collaboratively to "ask each patient who he is and what he wants and what is acceptable to him."¹³ Over time, bereaved people often speak of being empowered by the loss: they find themselves developing new voices where before they were silent.

There are no easy formulas for dealing with grief and bereavement and no real alternative to living with it and through it. To cope effectively involves learning to live with the fact that people die. Yet, how many of us live our lives with this as part of our awareness?

When death occurs, it invariably is accompanied by uncertainty and a bit of chaos. Yet, in the face of loss, we may look for structure and certainty, which often evade us. Coping styles differ, as do our understandings of death. These differences will influence our social and emotional resources. Some of these resources are consistent or compatible with our needs – others are not.

We need to find a language for recognizing that what we have been talking about extends over many years, and typically becomes part of the remainder of a mourner's life. In spite of my skepticism about a lock-step stage theory, we can look at bereavement as a developmental transition that unfolds with some sense of direction, (not linear, but more of a spiral) with no set times when particular insights or understandings should occur. I see the process of bereavement as unfolding in various phases that reflect mourners' experience: People are numb at the beginning, even when death was expected. There is an honest sense of disbelief that this could happen. It is difficult to take death in all at once and often years later the unreality of the loss can still be there. Most people realize that the person is indeed dead, but only gradually are they able to allow themselves the fullness of their feelings. While they may move towards their pain, they may also use distraction to move away from it.

Bereaved people need different kinds of help over time. Initially, they need friends to help with the concrete tasks of living and managing their family from the time before the funeral and immediately afterwards as they try to simply keep on living with the pain and the stress. As time goes on, if existing friendship groups and community ties are not sufficient, sometimes new friends and communities can emerge as part of the way a person chooses to cope with the loss.

Many people find that religion can be very important in trying to find a way of living with the fact that people die. Religious groups can rally to form a helping network at the time of death. Funeral directors may offer after care programs, as well. People need help establishing a life style appropriate to their new situation. This sense of need may be felt one or two years after the death. Resources for help still need to be there whenever the bereaved feel ready to access them.

Not everyone is a talker. We know that some men find talking support groups less helpful than being involved in activities that distract or require physical energy. Most bereavement workers note that women are more likely to want to process and talk about what they are experiencing. Some question whether these qualities in men and women are really gender specific or relate more to coping style.¹⁴ Whatever the gender or coping style, help must be responsive to the needs of the bereaved, to legitimate their feelings and provide them with the opportunity, information, and support so they learn to live in a new way in the world.¹⁵

How support is provided at the time of death, and how mourners respond tells us something about the way relationships are valued in a community, how care and concern are expressed, and how much a community recognizes the interdependence of its members. A strong mission to serve families and the larger community may be an important element in what fosters innovative approaches to bereavement care, such as at St. Vincent's and the UCSF program, spotlighted in this issue. It is noteworthy that both of these institutional efforts depend on staff donating time, in order to succeed.

If we think of bereavement as a time of transition, what do people need to know in order to make this kind of shift? The work of Irwin Sandler, Tim Ayers and their colleagues at The Prevention Research Center at Arizona State University, exemplifies how a psychological and educational program can provide concrete ways to help both bereaved parents and children adapt to the new family constellation and its shifting roles. These researchers have designed two dovetailed courses for surviving spouses and bereaved children respectively, to teach skills that help the family invent new ways of living in the face of the loss of a parent/spouse. Pathfinders, another skills development program, emerged from the observation of the need among elderly widowed for more information about how to care for their health and how to live alone. Michael Caserta, Dale Lund, and Sarah Rice found that the widows and widowers who participated in this course improved their perceived competencies in a variety of self care skills. Specifically, enduring physical activities, identifying and using community resources, organizing and using sources of help, and simple yet important life skills such as keeping a household organized and clean and filing financial and tax information were all domains, in which the participants reported improvements.¹⁶

Many techniques are being developed to help people integrate their loss into who they are and will become. Some approaches come from the bereaved's own imagination and experience. One family I know goes to the cemetery on their father's birthday with a bunch of balloons that they release, and then they go to his favorite ice cream parlor. Increasing attention is being paid to encouraging people to use the arts and literature to connect to the deceased in meaningful ways. Literature can help the bereaved make some sense of their changing life story—as in Christian Busch's Personal Reflection in this issue, where he uses the Danish writer Isak Dinesen's piece, "The Roads of Life," to catalyze new ways of making meaning of loss. Writing poetry, keeping a journal, or expressing oneself through painting or sculpture can also be therapeutic.^17,18

Support groups provide people with an opportunity to learn from each other. Peer support is a need throughout the life cycle; at each new stage or phase, people seek others who have gone before to learn from. Learning is easier when the helper is one step ahead of the person in need and has experience with the problem to use as a guide. In addition, dealing with a peer is a way of normalizing experience.

Some benefits that can ensue from participation in a well-run support group are: feeling cared about, and understood; discovering a common language; developing a sense of mutual obligation; gaining new information; and learning new skills. In this issue of Innovations, Yvette Colón offers a concise review of the Internet bereavement support groups and issues to consider when using this new medium to create community and support for this longstanding need.

The impetus for some powerful advocacy, educational, and support groups are examples of the creative transformation of grief. Compassionate Friends, Mothers against Drunk Driving and The Louis Brown Peace Institute are examples of what bereaved parents and friends can accomplish out of their pain.¹⁹ As bereaved people move away from the death event, this kind of participation also involves extended social activity. These affiliations provide the opportunity to "repeople" their lives.²⁰ In my experience, the people who are the most effective "helpers" of the bereaved are those who themselves can really listen, as well as allowing others to listen and hear one another, thus enhancing the life in the community as people learn to be there for one another over time.

Those of us who work in this area are always faced with our own humanity. We will all know death and grief in our lives. In a sense, we are each our own laboratory, using our own experience to test out theory and practice. In addition, our understanding of what is involved in bereavement and how best to help the bereaved is informed by accumulating evidence through research and documentation of innovative practices. We hope that this issue of Innovations offers new perspectives on several different approaches to helping the bereaved.

References

1. Silverman PR, Nickman SL. Children's construction of their dead parent. In Continuing Bonds: New Understandings of Grief, D Klass, PR Silverman, SL Nickman (eds.). Washington DC: Taylor & Francis, 1996:73-86.[Return to Editorial]

2. Lindemann E. Symptomatology and management of acute grief. American Journal of Psychiatry. 1944;101:141-148.[Return to Editorial]

3. Silverman PR, Klass D. Introduction: What's the problem? In Continuing Bonds: New Understandings of Grief, D Klass, PR Silverman, SL Nickman (eds.). Washington DC: Taylor & Francis, 1996:3-27.[Return to Editorial]

4. Prigerson, H.G. and Jacobs, S. Traumatic Grief as Distinct Disorder: A Rationale, consensus Criteria and a Preliminary Empirical Test. In: Handbook of Bereavement Research: Consequence, Coping and Care, MS Stroebe, RO Hansson, W Stroebe, H Schut (eds.). Washington, D.C.: American Psychological Association, 2001,613-645.[Return to Editorial]

5. Stroebe MS, Hansson R.O, Stroebe W, Schut, H. (eds.) Introduction. Handbook of Bereavement Research: Consequence, Coping and Care. Washington, D.C.: American Psychological Association, 2001:3-22.[Return to Editorial]

6. Fulton R, Owen G. Death in contemporary American society. In Death and Identity, 3rd ed., R Fulton, R Bendickson (eds.). Philadelphia: Charles Press, 1994:12-27.[Return to Editorial]

7. Aries P. The Hour of our Death. New York: Alfred A. Knopf, 1981.[Return to Editorial]

8. Sullivan HS. Personal Psychopathology, Early Formulations. New York: Norton, 1972.[Return to Editorial]

9. Gilligan C. In a Different Voice: Psychological Theory and Women's Development, 2nd ed. Cambridge, MA: Harvard University Press, 1993. [Return to Editorial]

10. Brown LM, Gilligan C. Meeting at the Crossroads: Women's Psychology and Girls' Development. Cambridge, MA: Harvard University Press, 1992.[Return to Editorial]

11. Kegan R. The Evolving Self: Problem and Process in Human Development. Cambridge, MA: Harvard University Press, 1982.[Return to Editorial]

12. White RW, Epston D. Narrative Means to Therapeutic Ends. New York: Norton, 1990. [Return to Editorial]

13. Slavitt DR. The treasures of grief. Journal of Pain and Symptom Management. 2000;20(5):357.[Return to Editorial]

14. Martin TL, Doka K. Men Don't Cry-Women Do: Transcending Gender Stereotypes of Grief. Philadelphia: Bruner/Mazel, 2000.[Return to Editorial]

15. Silverman PR. Helping Women Cope with Grief. Beverly Hills: Sage, 1980. [Return to Editorial]

16. Caserta MS, Lund DA, Rice SJ. Pathfinders: A self-care and health education program for older widows and widowers. The Gerontologist. 1999;39(5):615-620.[Return to Editorial]

17. Hotch P. No Longer Time. Albuquerque, NM; La Alameda Press, 2001.[Return to Editorial]

18. Henderson C. Losing Malcolm: A Mother's Journey Through Grief. Mississippi: University Press of MS, 2001.[Return to Editorial]

19. Visit the websites of these organizations at http://www.compassionatefriends.org/, http://www.madd.org/, and http://www.institute4peace.org respectively for more information.[Return to Editorial]

20. Silverman PR. The widow as a caregiver in a program of preventive intervention with other widows. Mental Hygiene. 1970;54(4):540-547.[Return to Editorial]

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