N ATIONAL COUNCIL ON FAMILY RELATIONS Death and Dying Family Focus On… Death and Dying

Issue FF12 IN FOCUS: Death as Normative in A Visible Death page F3 Family Life Death: A Family Event for Mexican Americans by Susan K. Hoppough, MSN, RN, Instructor; and Barbara Ames, Ph.D., CFLE, Professor, page F4 Department of Family and Child Ecology, College of Human Ecology, Michigan State University. Using Movies to Teach about Death and Dying he terrorist attacks of September institutionalized death, leaving the page F5 11, the graphic representation in home a sanitized and protected refuge. Tthe media, and the ensuing At the same time, physicians and family Death and Dying During Pregnancy: military response has put death in members avoided discussions of Perinatal Hospice the center of daily life in a way death with dying individuals, page F6 never experienced by post- seeking to “spare” them knowl- Recognizing the Humanity of Dying World War II generations. edge of their grave condition. Inmates: Prison Hospice Programs These events have assaulted While physicians and nurses page F8 us with the issue of our no longer engage in this own mortality, a topic evasive behavior, the Medicare Hospice Policy we, as a culture, tend advancement of tech- in Nursing Home Settings Hinders End-of-Life Care to avoid. In order to nology and increasing page F9 more effectively help health-care families in dealing options encourage Dying Caregivers with death at families to page F11 every stage of the discuss ways of Ambiguous Loss: Frozen Grief life course, we as prolonging life rather than death itself. in the Wake of WTC Catastrophe family professionals must begin to see In the 1960s, the hospice move- page F12 death as an important and appropriate ment reintroduced the notion of death subject matter for family life education. in home settings, making it more Grief: Intimacy’s Reflection In this article we reflect on attitudes common for individuals with terminal page F15 toward death and suggest strategies disease and their families to choose Working with Grieving Families for dealing with death as a normative home as an appropriate location for from a Meaning-Making Perspective component of family life across the death. Within hospice, death is openly page F16 life course. discussed, family members of all ages are encouraged to participate in Traumatic Loss and the Family DISCUSSIONS OF DEATH providing comfort care prior to death, page F18 Historically, death was a common and bereavement services are provided Parent Grief experience within families. Death was for family members. page F19 linked to childbirth and acute disease, Death discussions related to Dealing with the Violent Loss and young children often experienced terminal disease or aging frequently of a Child parental death. Because death typically focus on end-of-life decision-making. page F20 occurred within the home, all family Current family health policy related to members interacted with dying individ- end-of-life decision-making includes Helping Adolescents uals, witnessed death, and participated support for the use of advanced Cope with Grief in the funeral process. directives, which are legal instruments page F22 As a result of shifts in mortality, outlining choices for medical and life- Elder Grief death is now expected in old age, but prolonging treatments. However, we page F23 not in youth. The advent of hospitals have observed that it is uncharacteristic at the beginning of the 20th century for families to face critical illness armed

Death as Normative continued on page F2 Family Focus On… Death and Dying

DEATH AS NORMATIVE continued from page F1

with a plan for suggestions for inclusion of death conflict related to disbursement of death. Few have within each of the ten content areas financial assets after death. discussed a will, with the goal of validating death as an 7) Parent Education and Guidance: planned a appropriate topic of discussion within a Parents feel unprepared to discuss funeral, or life-course perspective. death with their children. Providing completed developmentally appropriate mate- advanced 1) Families in Society: Recognition of rials and strategies will assist them in directives. cultural variations among families introducing and continuing the Patients who related to death beliefs and practices. dialogue across the life course. have completed The development of culturally 8) Family, Law, and Public Policy: advanced relevant curricula will help Families of all ages and at all stages Susan K. Hoppough, directives report professionals interact more of the life course must plan for MSN, RN feeling effectively with families who are death, but few policies or other comforted in dealing with death issues. supports are available to encourage knowing prepa- 2) The Internal Dynamics of Families: this planning. Family responsibilities rations for death Death is a stressful event within that need public-policy support are in place, families. Family openness about range from routine safeguards such reducing the death will ease disruption of the as creating wills to making end-of- burden on their internal dynamics of the family when life decisions. families. death does occur. 9) Ethics: Death as an appropriate topic Our position 3) Human Growth and Development: of discussion across the life cycle is is that discus- Death is part of the life cycle. essential in understanding the sions of death Using teachable moments across formation of social attitudes within families the life course (e.g. the loss of related to the distribution Barbara Ames, Ph.D., must occur at a pet) will help families incor- of limited health-care When CFLE times unrelated porate death as a normative dollars and the death is a to a death event. topic of discussion. implications of tech- normal topic of Such opportunities may occur as part of 4) Human Sexuality: Death nological change. discussion across the a ritual or in relation to violence is related to sexual Recent advances in life course, families are reported in the media. Ritualistic values and decision- stem cell research better prepared for this practices and beliefs related to death making. Incorporating and the killing of inevitable event. vary among cultures and religions, but discussions of death as embryos force us to all provide a framework for discussing part of the life course examine the ethical death. Children can participate in these related to sexual choices is dilemmas associated practices through the lighting of essential in achieving healthy with procreation as candles, prayers, and days honoring sexual adjustment. Family life well as death. the dead. education should include such topics 10) Family Life Education: Planning, Secular opportunities to discuss as sexual relationships in illness and implementing, and evaluating life death may occur only in relation to the sexually transmitted diseases that course death education, with report of violence in the media. Events result in death. sensitivity to cultural and familial such as the shootings at Columbine or 5) Interpersonal Relationships: diversity, is a critical role for the deaths related to natural disasters leave Death is part of all interpersonal family life educator. children feeling frightened and unsure relationships. Understanding and of their safety, and parents unprepared freely sharing thoughts, fears, and Talking about mortality is not easy, to respond to their questions. Confusing desires related to death is essential to and the natural response is to protect and sometimes frightening euphemisms interpersonal relationships. family members from this difficult such as “passing,” “losing,” “gone to 6) Family Resource Management: subject. However, by acknowledging heaven,” or simply “gone” result from Decisions related to death and end- death as a normal and appropriate topic this uncertainty. of-life issues frequently hinge on of discussion across the life course, resources and the distribution of families can better prepare themselves DEATH AND FAMILY LIFE those resources among family for this inevitable life event. Family life EDUCATION members after death. Helping family educators have an important role in Family life educators are uniquely members to discuss death prior to facilitating this discussion. positioned to provide families with the death event will enable families assistance in the discussion of death to make informed choices about life- For more information, contact from a normative perspective. We offer prolonging measures and to reduce [email protected] or [email protected]

Family Focus ❘ December 2001 F2 Family Focus On… Death and Dying A Visible Death by Susan K. Giboney, M.A., CFLE, Professor of Education, Pepperdine University, Malibu, California

ur culture treats dying as if it appointment that day, but I thought it go? The problem is within. were invisible. We try to solve was routine. When I heard his voice, I Night: Against the prospects of no Othe problem of death by hiding knew I had to get home immediately. earthly future, the computer of my or denying it. We discourage dying The diagnosis of his invasive cancer put mind can only flash, “Does not people from knowing of their condition, us in shock! Here is Terry’s first entry in compute!” because death seems unmentionable. the journal he decided to keep, “It is our Light: Just when the night was darkest, Patients, in turn, son’s 25th birthday, but somehow that a pinpoint of light became visible. try to convince got lost in the events of this day — a Fanned by hope and help, it became others that they day that begins a journey into the my beckoning beacon and compass. are getting unknown for me, a journey of pain, Fight: Gradually sight, insight, and better. faith, doubt, tears, prayer, and, delight came into the new and Physicians are hopefully, healing. As I got into the car beautiful world unfolding daily in expected to to drive home from the doctor, I felt front of one who has been given a prevent dying. discounted in value. I felt like damaged reprieve from his sentence of death Many critically merchandise, like someone had — even if full pardon is not assured. ill persons die in suddenly stamped on my forehead, Right: It is all right. Finally there is a the hospital with 50 percent off. I had become a liability sense of peace and confidence only medical rather than an asset to my wife that whatever lies ahead will be Susan K. Giboney, M.A., staff members and family.” all right. The fear of the CFLE attending them. It was hard for us to night is past. The dawn Mourning is discouraged and death is fathom that this healthy, of faith is breaking. considered too unpleasant a subject for lean, happy man could be polite conversation. riddled with disease. As the caregiver, In studying lifespan development, We began a journey my two main goals people usually want to know what it is of dying and death. were courage for me like to die. However, since the dead As I told him, and loving care for cannot tell us, those who have been “You do not have him, care that would with the dying are a good source of cancer alone, we be as painless as information on dying and death. I had have cancer.” possible. The family the privilege of studying a man named supported his desire Terry who taught about dying in a ACCEPTING to die at home with visible way. He, along with his wife, DEATH dignity, and we enlisted taught numerous classes on marriage Elizabeth Kubler-Ross, a the support of hospice and parenting and was aware of the foremost author on death care. With this choice, implications of death on a whole family. and dying, gathered her we felt we had more When Terry was first stricken with information primarily by control of the process cancer, he thought he would learn much talking with dying patients. She and could support each about illness and share it with others. summarized the dying process in other in our stage of anticipatory grief. During his second round of five stages. We found our experience to Not everyone has the opportunity to terminal cancer, while still in his mid- parallel much of what she discovered. prepare for death, but as painful as it fifties, he decided to teach about how to According to Kubler-Ross the five stages was, we used this time to share our grat- die. He did it nobly and faithfully and of dying are denial, anger, bargaining, itude for the past, gain support for the left a lesson for all who shared his dying depression, and acceptance. During his present, and clarify plans for the future. experience. His death was not invisible, first bout with cancer, Terry summarized Dying people basically need food nor was it gruesome, but it was real and them this way in his journal: they can eat, a comfortable physical inspiring and sad all at the same time. environment, rest, freedom from pain, As a family life educator and as Terry’s Bright: Life is great and I am hale and and assurance that the family will be wife, I share his desire to make dying, hearty and in control. cared for. Distribution of possessions, death, and grief less hidden. Plight: I have cancer and I’m going to clarifying finances, confirming a will or die — maybe soon. living trust, and making funeral arrange- A TERMINAL DIAGNOSIS Fright: Life is in a tailspin, I’m scared, ments are tasks many want to complete. Terry called me at my office on a my fears know no resolution. Terry wrote, “My prayer all along has Tuesday. I knew he had a doctor’s Flight: I want to run, but where can I been to exit this life with the same Visible Death continued on page F7

Family Focus ❘ December 2001 F3 Family Focus On… Death and Dying Death: A Family Event for Mexican Americans by Estella A. Martínez, Ph.D., Associate Professor, Family Studies Program, University of New Mexico, Albuquerque

he strong familistic orientation of community rally for the funeral, which their antireligious behavior is relin- Mexican Americans and other functions to reintegrate the family and quished out of respect for the dead as TLatino families serves a support to reinforce ethnic identity. A sense of well as for the family. They often control system that is particularly historical identity is also revived because the public expression of their evident when there is a family members who have been feelings, but they admit to death in the family. geographically and psychologically greater overt expression of Clearly, the presence apart are reunited. This reinforce- grief than do men in of immediate and ment of ethnic values and demon- contemporary main- extended family stration of social support serve to stream society. Religion members and the replenish ethnic identity and provides all family manner in which reinforce a feeling of family members with they respond cohesiveness. opportunities for demonstrate that The traditional expressing feelings death is a family family values of through rituals. Unity event for demonstrating and togetherness are, Mexican respect for elders, however, most important Americans. for tradition, for to the family’s morale. The events authority in the surrounding family, and for COPING WITH DEATH death function religion pervade Mexican Americans to reintegrate the the funeral. Out of readily accept death as family. Family members reunite despite respect, family members both an abstract any geographical or psychological forego personal principles, such as not concept and a reality. There is a willing- distance between them. practicing religion or going to church ness to admit fear of death. Discussing Adaptations to death reflect group regularly, by participating in traditional death may be avoided, but there is a tradition and status. Death is often funeral events with the family. If there preoccupation with death. When death viewed as a tragedy during which are any nontraditional variations on the occurs, the expression of feelings is emotions are expressed rather than funeral, they are viewed as being intense. Mexican Americans cope with suppressed. Intense release of grief by imposed on the family by social forces death by attempting to master it through the bereaved is common. Death may outside the family such as religious ritualistic acts such as a rosary, a mass, a even be accepted as a life event beyond dogma or cemetery officials. graveside service, and the annual the family’s control. The influence of a observance of All Souls’ Day on family’s working-class socioeconomic FAMILY ROLES November 2, which is status contributes to a fatalistic accept- Traditional values are also Unity more commonly ance of death. evident in the roles assumed by and together- known as the Day of family members during the ness are most the Dead or Día de los THE IMPORTANCE OF FAMILISM crisis periods of death. For important to the Difuntos. Despite their heterogeneity, Mexican example, socialization to family’s morale. They also cope American and other Latino families have funerals begins at a young with death by dwelling an intra-group consistency in their age. Children attend funerals on it until the anxiety ideology of death. Attitudes toward regularly. Controls by the older is worked through, and death vary among the highly educated generations over the younger generation by integrating it meaningfully and more acculturated family members. are reasserted by expecting and into life in various ways such as visits to Nevertheless, “familism,” that extraordi- demanding the participation of children the cemetery where graves are decorated nary importance placed on the family, and youth in events such as the wake or with flowers, balloons, and other serves to maintain consistency within rosary, the memorial service or mass, as mementos on holidays or special family the group when it comes to their well as the funeral and subsequent days. The influence of acculturation to attitudes toward death. family gatherings. the values of mainstream society, The funeral is the most significant Women tend to be the focus of however, modifies many of these death- family ceremony among Mexican support and emotion. This may be a related behaviors among members of Americans. This is demonstrated by the response to their traditional roles of Mexican American families. common opinion that it is more service and affection that function to important to attend a funeral than any consolidate the family. Men attempt to For more information, contact other family event. The family and the maintain an acceptance of death. Often [email protected].

Family Focus ❘ December 2001 F4 Family Focus On… Death and Dying

Using Movies to Teach about Family Focus is now on Death and Dying our web site! This issue of Family by Cheryl Malone Robinson, Ph.D., CFCS, CFLE, The University of Tennessee at Chattanooga Focus is also available on our web site in n light of the recent attack One such movie is The Lies Boys pdf format. Use on America, end-of-life Tell, starring Kirk Douglas and Craig T. Acrobat Reader to Iissues have become the Nelson. The movie opens with download the entire focus of discussions in Using Kirk Douglas, in the last publication, and make many homes, offices, movies makes it stages of lung cancer, copies for classroom use or to pass on and houses of easier for students to confined to bed at home. to colleagues. As a special bonus, the worship. As a think about death. He is being attended by Internet version features the “Web Extra,” society, however, members of his family. His which contains additional articles not Americans resist wife of many years, son, included in the print edition, due to addressing these issues daughter, their spouses, and space limitations. until confronted with the death grandchildren are quick to offer opin- of a grandparent or parent. Even ions and advice. Family members focus These articles include: then, we are sometimes hesitant to on having him follow the doctor’s orders Last Wishes explore the information needed to and avoiding risks of any kind. They by Joyce A. Shriner and Ted G. successfully resolve the passing of a totally ignore his wants and his Futris family member or friend. Like the emotional needs as he prepares to live Rituals Help Us Cope with Grief majority of Americans, college students his last days. by Patricia H. Zalaznik have The attitudes of the movie’s protag- Adolescent Grief difficulty addressing issues surrounding onist and the characters that surround by Sueanne Krzyminski death. Even though we often hear it said him give student viewers insight into The Expression of Disenfranchised Grief that death is just a natural part of life, typical behaviors often displayed by on the Web most of us continue to be reluctant to family members in these circumstances. by John A. Blando and explore and discuss these issues. Characters behave as they believe they Katie Graves-Ferrick Fear and anxiety in regard to the should behave. Their actions are solemn process of dying as well as death itself and influenced by rigid tradition. Our www.ncfr.org are very common emotions in our culture is just awakening to the impor- culture. Worries about not being able to tance of listening to dying people in care for ourselves, being a financial and their last days and valuing their wishes. emotional drain on our loved ones, Students watching the movie have the draw conclu- suffering pain and physical impairment opportunity to examine these issues. sions, and raise are also very common. We also fear Mourning rituals provide comfort additional ques- being separated from those we love and and a feeling of security during the time tions. Discussion losing control of our destiny. Because we surrounding the death of a loved one. flowed easily, generally experience negative emotions Of course, mourning rituals vary with even though the when our thoughts turn to death and religion and ethnicity. The use of movies topics had dying, we usually avoid talking about in the classroom may be the only place previously been the subject, much less studying it. that students have the opportunity to be difficult to exposed to rituals other than those of approach. DEALING DIRECTLY their own family. Students seem WITH THE ISSUE Cheryl Malone genuinely inter- Some universities include courses in COURSE STRUCTURE Robinson, Ph.D., CFCS, ested in learning their curriculum that focus primarily on Here’s how I structured the course when CFLE about the issues the aging process and death issues. I showed The Lies Boys Tell. If the class highlighted in the movie. Others offer courses that briefly address was long enough, I showed the movie The movie is educational, but it is these issues through chapters embedded during regular class time. If not, I also humorous. Using this approach in texts on more general topics. It’s a showed it over two class periods. As a makes it easier for students to think about challenge to design a course that deals last option, students could check the death and dying and to ask the questions directly with the issues surrounding movie out and watch it. they have hesitated to ask before. death and that will engage students and I prepared a movie guide to lead encourage critical thinking. One way to students to the most salient parts of the The movie guide is available by request. do this is to use a movie that illustrates film. The guide contained questions that For more information, contact Cheryl- these issues. encouraged students to think critically, [email protected].

Family Focus ❘ December 2001 F5 Family Focus On… Death and Dying Death and Dying During Pregnancy: Perinatal Hospice by Joann O’ Leary, MPH, MS, Ph.D. Candidate; Work, Community, and Family Education; College of Education & Human Development; University of Minnesota

n a recent column Jane Brody told the PARENTING THE BABY TELLING THE SIBLINGS poignant story of a family who ended The literature on infant loss points out It’s painful for parents to tell their other Ia pregnancy because of multiple fetal that infant loss is especially difficult children that this new baby is going to abnormalities. Sadly, this phenomenon because parents are supposed to die die. While they initially may not want to is more common than most people first. In addition, it has been well do this, clinical practice has demon- realize. It is speculated that congenital documented that infant loss is not strated that children are aware of abnormalities occur in three to five something parents “get over.” An infant emotions in the family and need to percent of all births. There is who dies continues to have a place in know what is going on. They, too, will currently an increase in the family. The parents must now mourn the loss of the baby that was families of reproductive age incorporate their grief into expected to come home. They, too, need who are at risk for unfavor- The their family story, and this to be involved in building the memories. able pregnancy outcomes. family can affects their parenting in Here are some ways that parents can This is partly due to the “be with” the baby profound ways. Many of support their children during this time: increase in reproductive and create memories these families have other • Tell the children about the baby’s technology, as families of this child. children who are also death using only as much detail as is who were unable to affected. This is potential necessary. Keep in mind each child’s conceive previously are area for family education developmental level. now getting pregnant. professionals to provide • If the child is in nursery or According to the 1992 publica- support and education. elementary school, tell the teacher tion Health Care Issues in Genetics, some Professionals should begin by what is going on in the family. The 200,000 infants are born each year with helping families to understand their role teacher can watch for unusual birth defects. This is the leading cause of as parents to the unborn baby during behavior and give support to the infant and childhood mortality. Our pregnancy. Learning about fetal develop- child during a time when parents are health-care system has difficulty dealing ment helps parents to build memories of grieving and may not be as available with chronic disease and providing this child and his or her place in the to their children. family-centered, community-based, family. We know, for example, that • Involve the children in the multidisciplinary, and coordinated babies hear in utero by 20 weeks baby’s story. Older children can services for children and adults. With gestation. Even sick fetuses are write in the journal or draw rare exceptions, our current managed- aware of their environment pictures of things that are care systems do not provide important and know the voices of important to them. If primary care services for couples who the people in their children are too young to are at risk for unfavorable pregnancy family. draw, parents can trace their outcomes. Genetic counselors estimate Parents can be hand and foot prints so they that only about one percent of these encouraged to can remember how old they families receive the long-term medical keep a journal, were when this baby was part and preventive services they need. including ultra- of the family. When some families receive bad sound pictures • If the parents are comfort- news, they chose to continue a preg- of their baby. able and this is allowed, let nancy. These families have unique issues They can the children be part of future to face as they prepare for labor, birth, write the ultrasounds so they can “see” the death, and their continued life as “story” of the preg- baby, too. “family.” The medical community labels nancy from the begin- • Find someone who will talk with the these pregnancies “perinatal hospice.” In ning, up to finding the bad news, and children about what to expect when layman’s terms, this refers to a mother how they are now “being with the baby.” the baby is born. Many hospitals carrying a baby who will die during This acknowledges they are still parents have child-life specialists who are pregnancy or shortly after birth. and helps them “be with” the baby very knowledgeable in this area. Although the medical community may before he or she dies. It also gives them • Decide before the birth whether speak of “perinatal hospice,” for these something concrete to hold and look siblings will see the baby after he or families, this is, first of all, their baby, back on after the baby’s death. Grand- she has died. Clinical experience has and only secondarily a baby with a parents, aunts, uncles, and friends can demonstrated that most children see genetic abnormality. also participate in this memory-building. a “baby,” not abnormalities. They are Perinatal Hospice continued on page F7

Family Focus ❘ December 2001 F6 Family Focus On… Death and Dying

PERINATAL HOSPICE continued from page F6 RESOURCES always grateful they were able to see subsequent child. The “story” of the their brother or sister. Some families other baby becomes part of the family. Americans for Better Care of the who chose not to do this have found This helps later-born children become Dying. Founded in 1997, this out later that their children regretted their own persons without feeling they Washington, DC based organization has not being able to see their sibling. have to replace the baby who died. three goals: 1) build momentum for Older siblings will also be able to share reform, 2) explore new methods and MAKING THE BABY the memories with the later-born systems for delivering care, and 3) shape PART OF THE FAMILY children. This assures that all children public policy through evidence-based These memories are helpful for children. in the family have their own place understanding. www.abcd-caring.org Having a booklet that “tells the story” of and role. the pregnancy of their sibling will allow Although we think of pregnancy Home Care Guide for Advanced children to review what was going on in loss, stillbirth, and newborn death as Cancer. This site, cosponsored by the the family at that time. As children medical problems, they affect the entire American College of Physicians and the mature, they will ask more detailed family. That’s why families in this situa- American Society of Internal Medicine, questions when they are ready for more tion would benefit from working with a offers practical advice for caregivers. Of information. The booklet becomes a multidisciplinary team that includes not special interest is the section entitled visible reminder of the baby who is still only medical and hospital personnel but “What to Do Before and After the part of the family but no longer physi- family life educators as well. Moment of Death.” cally present. Its presence lets children www.acponline.org/public/h_care/ know that the baby is a topic that can be Joann O’Leary’s research is supported by a index.html openly discussed in the family. fellowship from the Bush Foundation, St. The booklet also becomes a Paul, Minnesota. For more information, Hospice Foundation of America (HFA) resource for the family if there is a contact [email protected]. offers information on how to locate a hospice as well as an “end-of-life data- base.” www.hospicefoundation.org

VISIBLE DEATH continued from page F3 Last Acts is a national coalition of nearly 800 organizations whose mission is to peace, confidence, courage, and tions, reading material, solicited improve care and caring near the end of unswerving faith that I have tried to advice, and realistic expectations are life. Members include AARP, Catholic live. I want the last chapter of my life to helpful. Stories of unrelated experi- Charities USA, American Hospital be the finest, not for me, but that in my ences, denial of grief, and providing Association, and National Council on death I will help others seek and trite answers are not helpful. Aging. The site offers articles on discover an unfathomable richness in • Emotional: Allowing tears and open medical, legal, and other issues. faith and to not lose heart.” conversation about the deceased is www.lastacts.org helpful. Repeating cryptic platitudes, HELP FOR THE GRIEVING denying emotions, and acting as if MEDLINE plus: Death and Dying. The The death of a loved one is nothing has happened are not National Institute of Mental Health offers among life’s most For helpful. articles about all aspects of the topic and stressful events. The families, sadness • Social: Social invita- links to other relevant sites. grieving process may and stress are tions, letters, and listening www.nlm.nih.gov/medlineplus/ occur over a short inevitable, but are helpful. Ignoring or deathanddying.html period of time or it courage and support demonstrating discomfort may never be finished. in the dying process with grief is not helpful. Partnership for Caring is a national Research shows that are achievable. coalition that includes the Academy of generally grief reactions Death is real, palpable, Hospice and Palliative Medicine, the are dealt with on four levels. anguishing, exhausting, National Academy of Elder Law These levels were real to me. I discov- inspiring, courageous, and noble. Death Attorneys, National Council on Aging, ered that some things helped and some is part of life. For families, sadness and AARP, and many other organizations. It did not. stress are inevitable, but courage and offers counseling services (toll-free • Physical: Help with physical support in the dying process are achiev- hotline, 1-800-989-9455) and educa- needs such as food, cleaning, able. Death does not have to be a tional services, tracks and monitors transportation, and care is welcome. hidden, lonely process. Thank you, all state and federal legislation and Second-guessing the choices for Terry, for a mighty lesson! significant court cases related to physical care or intrusive physical care are not helpful. For more information, contact continued on page 14 • Intellectual: Appropriate conversa- [email protected].

Family Focus ❘ December 2001 F7 Family Focus On… Death and Dying Recognizing the Humanity of Dying Inmates: Prison Hospice Programs by Norma A. Winston, Ph.D., Professor of Sociology, University of Tampa; and Svetlana Yampolskaya, Ph.D., Research Assistant Professor, Florida Mental Health Institute (FMHI), University of South Florida

ost families with a relative in possible. Prison Hospice promotes pallia- RECONNECTING WITH FAMILY prison never think of that tive care for terminally ill inmates. The With the patient’s permission, hospice M person dying there. Yet the goals of the program include providing staff work to locate family members chances of doing so have increased in appropriate care for dying prisoners, with whom the patient has lost contact. America in recent years. Since 1993, the assurance of “death with dignity,” and Patients are encouraged and assisted proportion of deaths among inmates has cost-effective care. with letters and other forms of commu- risen by 550 percent. Factors respon- Eligibility requirements for entering nication with family members. When sible for this unanticipated increase the Prison Hospice Program include possible, family members are advised include the rise a diagnosis of a terminal illness, a and appraised of the patient’s on-going in the incidence prognosis of six months to one medical condition. of AIDS among year left to live, and a request As the patient draws prisoners; the from the patient for closer to death, visitation imposition of hospice care. rules are relaxed for biolog- longer sentences All Prison Hospice ical and surrogate family as punishments Programs are offered members. Hospice staff for crimes within the prison or the provides information or refer- committed; the prison hospital. Hospice rals on accommodation to out-of- increased likeli- personnel consist of multi- town family members. The staff hood, since the disciplinary teams that include a also offers bereavement counseling passage of the nurse, a physician, a psycholo- to biological and surrogate family Norma A. Winston, Sentencing gist, a social worker, a clergy members. Ph.D. Reform Act, that person, and a security official. After death, a memorial the prisoner will Hospice staff provides mental, service is held, either under the serve the full emotional, spiritual, and auspices of the hospice program or time imposed at educational counseling to the within the prison itself. In some sentencing; and dying patient, as requested or cases burial can also be arranged the fact that it is deemed necessary. or the body can be shipped to the very difficult to funeral home nearest to the family. get a medical INMATE VOLUNTEERS Approximately 20 prisons in the parole. One special feature of prison hospice is United States have or are working The need to that prison inmates volunteer to help toward establishing Prison Hospice provide quality dying individuals. All inmate volunteers Programs. The programs already in medical care to receive eight to 36 hours of training in operation have proved very effective. an increasing accordance with standards established Reports indicate that the Prison Hospice Svetlana Yampolskaya, number of by the National Hospice Organization. Program has served to “humanize” Ph.D. terminally ill Before receiving their training, all terminally ill patients. Patients have felt prisoners has volunteers undergo a thorough the warmth and concern of others and strained the capacity of the correctional security screening. have been spared the indignity of dying system. Utilization of external systems, Once trained, these inmate alone. In some cases, patients have like hospitals and rehabilitation volunteers provide dying prisoners with renewed ties with family members, programs, has proved expensive and companionship and assistance with who have the opportunity to say “good- posed additional security problems. One daily activities, such as eating, personal bye” and to be with the patient at the alternative that has developed is the care, or letter-writing. Volunteers time of death. Prison Hospice Program. generally give care outside of their regular work hours. But once their THE VOLUNTEER’S EXPERIENCE PALLIATIVE CARE patient is diagnosed as actively dying, Perhaps the most surprising outcome of Hospice is an interdisciplinary, comfort- volunteers may be released from work Prison Hospice is the transformation oriented program of care that allows to spend up to 24 hours a day with the experienced by many of the inmate seriously ill and dying patients to live dying inmate. This means that the volunteers. As one inmate volunteer and die with dignity and as little pain as inmate does not die alone. said, “It made a world of difference Prison Hospice continued on page F10 Family Focus ❘ December 2001 F8 Family Focus On… Death and Dying Medicare Hospice Policy in Nursing Home Settings Hinders End-of-Life Care by John Machir, CFLE, Director of Social Services, Willow Point Nursing Home, Vestal, NY

ince the beginning of the hospice BARRIERS TO ACCESS developed the Resident Assessment movement, there have always been Whether an individual is at home or in a Instrument (RAI). The RAI consists of a Snaysayers who decried the type of nursing facility, Medicare requires that Minimum Data Set (MDS) and Resident care that hospice organizations give the anticipated life expectancy be Assessment Protocols, which are consid- dying individuals. Many medical determined. Physicians must certify that ered indicators of poor or inadequate professionals, accustomed to restorative the anticipated life expectancy of the care. The RAI does not have existing medicine, were patient is six months or less. Nursing protocols geared toward palliation. This unwilling to facilities, which are strictly regulated by means there are no standards that “give up” on the federal government, are often much directly apply to individuals who are more aggressive more conservative in their estimate of actively dying from chronic, progressive, treatments, life expectancy because Medicare has incurable illness. Therefore, nursing though the traditionally frowned upon improved facilities are at risk in state surveys for inevitable health outcomes for persons enrolled in declines in resident health if surveyors outcome of the hospice care. Thus, nursing-home feel that these declines were medically disease was residents enrolled for hospice services avoidable. certain. With a are almost certain to die within the The hospice agency is responsible great deal of specified six-month time frame. for the implementation of the care plan. John Machir, CFLE teaching and the Clearly, individuals with diseases But the nursing facility retains the passage of time, such as ALS (Lou Gehrig’s disease) and responsibility for the quality of care however, the medical profession has some forms of cancer can benefit from under the survey process. The facility learned to let patients determine the palliative care long before the final six must continue the same level of care the course of their own medical treatment. months of life. That’s because while they individual has been receiving, with the These days, most people recognize may live longer than six addition of the hospice services. The the benefits of hospice care for both months, curative treatment is hospice organization, while dying individuals and their families. no longer the focus, and providing care within Palliative care treats death as a normal restorative treatments only Medicare the nursing facility, process without hastening or delaying it. create discomfort or pain policy supports shares none of the Such care considers and integrates the without changing the rehabilitation and regulatory burden. psychosocial and spiritual aspects of the outcome. Thus, in restorative care for nursing- That’s why some individual, acknowledging that the mind some circumstances, home patients, rather nursing facilities, and spirit, in conjunction with the body, the six-month prognosis than palliative care. operating under already constitute the individual. Hospice serv- requirement limits access to tight regulatory scrutiny, ices include specialized nursing care, hospice services for individuals are reluctant to enter into medical social services, counseling and who prefer palliative care. contracts with providers of bereavement services, friendly visitors, hospice services. pastoral services, and, of course, A HOSTILE REGULATORY appropriate pain management. The goal ENVIRONMENT AN EMPHASIS ON RESTORATIVE is to provide a comfortable, dignified Nursing-home patients face additional THERAPIES death for the individual and to support problems. Medicare policy is strongly Medicare reimbursement policies family members as they deal with oriented toward rehabilitation and encourage nursing homes to focus on anticipatory grief and bereavement. restorative goals for these patients. The restorative therapies. Under the current The emergence of the Medicare Omnibus Budget Reconciliation Act of Prospective Payment System, new hospice benefit has made it possible for 1987 (OBRA) specifies that the goal of residents must be classified in one of 44 many people to take advantage of nursing-home care is “…to attain or Resource Utilization Groups (RUGs). hospice services. This benefit is a real maintain the highest practicable RUGs for restorative therapies are help for individuals who die in their physical, mental, and psychosocial well- reimbursed at higher rates than RUGs own home among family and friends. being of each resident.” for hospice care. Medicare assumes that But for the 20 percent of Americans who To this end, the Centers for rehabilitative therapies are more costly die in a nursing home, Medicare policies Medicare and Medicaid Services (CMS), to provide and that restoration of create specific inequities that can formerly known as the Health Care function is always the most desired complicate the dying process. Finance Administration (HCFA) have health outcome. But in the case of dying Medicare continued on page F10

Family Focus ❘ December 2001 F9 Family Focus On… Death and Dying

MEDICARE continued from page F9 individuals, skilled pain and symptom resources to pay for room and board, probable outcomes of palliative care management, personal care, and face a dilemma. Many families choose interventions. Accept these interven- emotional support are more desirable. skilled nursing benefits to avoid the tions as a viable form of treatment The current payment structure does not high costs of room and board, even for patients at the end of life by acknowledge the benefit of these serv- though they prefer palliative care. This establishing palliative care survey ices, and offers no financial incentives choice also favors nursing homes since standards for nursing homes to provide them. reimbursement rates for restorative care • Modify current RUGs to reimburse are higher. In this situation, dying nursing facilities for intensive FINANCIAL INEQUITIES individuals must worry about current personal care services and symptom Payment sources and ability to pay finances as well as the long-term management at appropriate rates. create financial inequities that limit financial impact on family members. Modify RAI to reflect a resident’s access to hospice care. Individuals who In some states, Medicaid places wishes for treatment through are eligible for both Medicaid and liens on the dying person’s home in advance directives. Add pain- Medicare have the most financially order to recoup the cost of payments management protocols for end-of- neutral option for hospice care. made to skilled-nursing facilities. Living life care. But reimbursement is complicated. spouses or adult children who are co- • Create uniform standards for services Medicare hospice benefits pay for the owners of the home can retain the use covered by the Medicaid room-and- cost of hospice services but do not pay of the home until their own death. But board payment, and eliminate “pass- for room and board. Medicaid, however, then the home is sold and the medical through” payment system with direct pays hospice providers at least 95 assistance agency is paid from the payments to nursing facilities. percent of the normal rate for room and proceeds. Some individuals, wishing to • Establish financially neutral board. Hospice providers then “pass leave their home or some other form of Medicare reimbursement policies for through” the room-and-board payment inheritance to their families, decline nursing-home hospice that will elim- to the nursing home. Room-and-board Medicaid coverage entirely and endure inate the financial penalty to either charges typically include the cost of restorative therapies for as long as the nursing home or the individual. personal care services, medication possible under Medicare’s skilled- The goal of hospice is to improve administration, cleaning, use of durable nursing benefit. The result is often great the quality of life for individuals who medical equipment, and assistance with suffering — not only for the nursing- are dying. In order to make this activities of daily living (there are some home resident but also for members of possible, we must remove the barriers to variations from state to state). the family who witness the agonizing hospice access. Only then can individ- Individuals covered by Medicare demise of a spouse or parent. uals and families find meaning in the alone must, after a hospital stay, choose final days of life instead of having worry between the skilled nursing benefit RECOMMENDATIONS about money and endure restorative care which covers room and board or the The following changes would greatly they don’t want. hospice benefit which does not. Families improve access to Medicare hospice who do not qualify for Medicaid services for residents of nursing homes: For more information, contact coverage but who do not have the • Train state surveyors to understand [email protected].

PRISON HOSPICE continued from page F8 having someone to care about. I never “Jim,” who is serving a life sentence Jim and Rafael spent hours talking knew how to care about anyone else but at Oregon State Penitentiary, volunteered about the things that mattered to them: myself before.” As they help the dying to care for “Rafael,” a 27-year-old inmate family, love, memories, fears, regrets, patient, the inmate volun- dying of prostate cancer. “I knew that spiritual questions, pain, cancer, and teers come to understand Rafael’s death would be very painful death. One day as Jim helped Rafael to their own mortality. They for me if I allowed myself the bathroom, Rafael, overcome by the express remorse for their Prison to get close to him,” Jim fear that he would soon die, asked, “Are crimes and say how hospice programs says. “But keeping my you ready for this?” Jim replied, “What awful it must have been assure that inmates distance, or imposing have I been telling you all along?” for their victims. Most do not die alone. boundaries on our relation- Then says Jim, “He gave me a gift I important of all, they ship were never options for will treasure until the day I die. He said, frequently develop a me. I wanted and needed to ‘A month ago I didn’t know you existed, family bond with their patient: open my heart completely, to be but now you are my family.’ ” hence the patient does not die alone there for him, unconditionally, no but in the presence of a compassionate matter how painful if might be for me in For more information, contact nwin- “family member.” the end.” [email protected].

Family Focus ❘ December 2001 F10 Family Focus On… Death and Dying Dying Caregivers by Judith C. Hays, RN, Ph.D., Associate Research Professor, Department of Psychiatry and Behavioral Sciences, Duke University Medical Center

dele M. is 54 years old and lives Caregivers of the chronically ill describe me. Everybody tells him, ‘You’ve leaned with her two sisters in the home many problems, including the growing on her too much. And now, you don’t Oof their mother, who has dependency of care recipients, lack of know how to do it because you’re afraid Parkinson’s disease. Although she has leisure and privacy for themselves, and you might lose her.’ ” her own bedroom, Odele disrupted routines and relationships. Another 20 percent of the subjects says, “I only get to use it When a caregiver herself is chroni- had primary care of minor children, the on weekends, because I cally — even fatally — ill, she youngest of whom was nine years old. have to spend the night These must manage her own disease Some of these women were married, but with my mother in her women and the chronic illness of her others were single parents. Barbara D., room through the wanted to make a family member. Not all chronic for example, was widowed 16 years ago week. We need lasting contribution illnesses are so debilitating as to with a three-month-old son. She said, “I somebody to be to the emotional make this dual role impossible. In just hate for my illness to interfere with there with her, to get and physical the case of metastatic breast cancer, (my son’s) schoolwork, but I’m afraid it up with her to go to needs of those for example, patients may be able to has. His junior year grades are poor, the bathroom. It’s left behind. function virtually independently and they are so important to working out okay.” while suffering from a fatal colleges. We have talked about Odele, like one of her illness. boarding school, but he doesn’t sisters, has survived a want to go, or to go live with mastectomy and two rounds of CARING FOR ONESELF my sister in Wilmington. He chemotherapy. She now has advanced AND OTHERS wants to stay here and grad- metastatic breast cancer. I became interested in uate with his friends. That’s Despite the extensive literature on terminally ill caregivers why I kid with my oncologist. death, dying, and caregiving, virtually while conducting inter- He just has to keep me alive nothing is known about the experiences views with 25 patients two more years, at least!” of terminally ill caregivers. In theory, with Stage IV breast Of the remainder of the dying well involves continuing to cancer. They ranged in subjects in the study, one in contribute to the well-being of others age from 35 to 94 years. five was faced with the chal- and planning for dependents following They included both lenge of providing for her own death. Yet caregiving while dying is African American and care without ongoing help from family often neither acknowledged nor white women. About half or friends. Janine R. was one such supported. were married. patient. She was 63 years old, divorced, Who among us are caregivers? In One quarter had responsibility for recently retired, and had no living chil- one sense, we are all caregivers. In the care of a frail or chronically ill dren. She lived alone. “Who would take normal everyday activities we take care adult — sometimes more than care of me is an issue. Because I don’t of family members and one. For example, Dorothy J. have anyone that I could go live with, ourselves. We prepare meals. had recently returned to that would take me. I don’t know what We put children to bed. North Carolina to care for I’ll do when I get to (the point of We telephone Mother her widowed mother dependence), and I know I will. But I on Sunday. who was an amputee. probably need to be thinking about it, There is also the Her husband, an alco- making some arrangements. But I don’t special caregiving for holic, accompa- know what I’d do. I feel very insecure persons with chronic nied her in the about the future because I don’t know illness. An estimated 7 move. She said, where I am going to go. I’ve always had million caregivers have “My husband took care of me and a terrible fear of having to go into a some responsibility for my mother when I was so sick. But as nursing home. I’d rather just go ahead chronically ill persons in soon as I start to feel a little better, he’ll and die.” the United States. They are go on a binge. It just turns him into a primarily women, middle-aged, and horrible person! Running in and out — A LASTING CONTRIBUTION married. Their tasks include carrying staying out all night. I had to take out a These breast-cancer patients not only out prescribed regimens, preventing and special insurance policy in case he hurts took responsibility for their own self- managing medical crises, and control- somebody, and they put us both out on care, the management of their own ling symptoms. They try to make life as the street. He just gets so scared, you chronic illness, and care of dependent normal as possible for all concerned. know, because he is so dependent on family members. They also reported Dying Caregivers continued on page F12

Family Focus ❘ December 2001 F11 Family Focus On… Death and Dying

DYING CAREGIVERS Ambiguous Loss: Frozen Grief in continued from page F11 caring for pets the Wake of the WTC Catastrophe and for the daily and crisis-related by Pauline Boss, Ph.D., Professor of Family Social Science, University of Minnesota needs of friends and neighbors. n September 12, the day after meetings and training workshops on They counseled the World Trade Center Towers ambiguous loss for therapists. Our new and encouraged Ocollapsed, I received an emphasis on training therapists on how other patients anxious phone call from Lorraine to work with families of the missing brought to their Bellieu Fishman, a and how to conduct multiple family attention by former student who meetings will require further trips their doctors, had taken my to New York. Judith C. Hays, RN, and wrote letters seminar on Ph.D. and sent devo- family stress MAKING SENSE OF THE tional material to and ambiguous SENSELESS chronically ill celebrities they read about loss some two The first team in the media. They contributed in decades ago. consisting of myself numerous ways to the well-being of She was calling and two graduate their physicians and nurses. They from New York students, Christine undertook projects to improve their City. Her husband, McGeorge and environments, both interior spaces and Mike Fishman, Tai Mendenhall, the natural world. president of the served from The women were also particularly 70,000-member Local 32-BJ of the September 16 careful for their legacy, for making a Service Employees International through 18. lasting contribution to the emotional Union, had asked her to find help for Christine McGeorge and I returned and physical needs of those left behind. his members and their families. to New York from September 26 through Odele M. hoped her dying wouldn’t be Members of the local include office 29 with Dr. Elizabeth Wieling and two “a long, drawn-out painful process. And and window cleaners, maintenance and other graduate students, Beverly Wallace if it was, I just pray that I would have security workers. Some 350 were and John Beaton. A third team, led by the grace to go through it, in a way that working at the World Trade Center on Dr. William Turner and myself with would not hurt anybody, you know? the morning of September 11. Twenty- graduate students Tai Mendenhall, That’s the thing that bothers me about seven were still missing, and many were Kristen Holm, and Jerica Berge, served this, is knowing that it will cause my eyewitnesses to the attack. from October 10 though 14. mother and my daughter and my sons I was not eager to get on a plane The scene we encountered at and my grandchildren to suffer. And I and head for New York, but I couldn’t ground zero was indescribable. The don’t want to leave any bad feelings with refuse. If years of academic work wreckage, the smell, the smoke — it was anybody.” suddenly become useful to people who like entering an entirely different As I continue my work on care- are trying to recover from an over- country. I could only think of the World giving and terminal illness, I am finding whelming crisis, then one has to War II movies I had seen as a teenager: a number of urgent research questions. respond. utter destruction. For example, we need to know, in more I called Charles Figley, professor of On our first trip, we mostly representative samples of caregivers, social work at Florida State University listened. When something senseless how many are terminally ill. We also and founder of the Green Cross Projects, happens, people try to make sense of the need to find out how many caregivers to ask if he could arrange to send a event. They do this by telling their story. there are in samples of patients dying of group of certified traumatologists to So we listened: in meetings, out in the terminal illnesses other than breast New York. The Green Cross volunteers hallway, on the run. We heard stories of cancer. Most importantly, we need to worked in the 32-BJ building for a guilt: some people were outside having a learn about the unique clinical needs of month and were very helpful with the cigarette when it happened. Their dying caregivers. Currently, we do not initial trauma work. friends inside didn’t make it out of the routinely address the extent of care- At the University of Minnesota, building. We also heard many horror giving responsibilities or the emotional with funding obtained by the Dean of stories too terrible to repeat. toll they take on terminally ill patients, the College of Human Ecology, we Over the course of our three visits, but this is something we need to start organized teams of faculty and family- we organized and conducted “family doing. therapy interns who would fly to New meetings” with those in the union who York bi-weekly to do in-building and have missing family members. In addi- For more information, contact in-office counseling as well as family tion, we conducted a session of [email protected]. Ambiguous Loss continued on page F13 Family Focus ❘ December 2001 F12 Family Focus On… Death and Dying

AMBIGUOUS LOSS continued from page F12

“multiple family meetings” to connect FROZEN GRIEF when the city began issuing certificates families of missing persons with other Sometimes ambiguity erodes the of presumed death, Mayor Giuliani families in the same situation — as well cognitive and emotional process that made sure that survivors received a as with a therapist who speaks their allows us to grieve fully and eventually small urn of ashes with each certificate. language, since many families are begin coping. The result is “frozen One family member was quoted as Spanish-speaking. grief.” Without a chance to participate saying that he had chosen to believe in the rituals that normally bring his brother’s ashes were in that urn. FACING AMBIGUOUS LOSS comfort to bereaved individuals and This perception allowed him to move We also conducted a families, people get emotionally stuck in forward and begin coping with his loss. training workshop on sadness and find it But thousands of death certificates still ambiguous loss for impossible to go on remain unclaimed because families are 100 therapists with their lives. not yet ready to make that difficult from the Roberto They may become decision. Clemente depressed or Survivors can help themselves by Center, the unable to make asking whether the missing person Ackerman decisions, go to would have wanted them to remain so Institute of work, or perform sad or be unable to meet the everyday Family daily tasks. This demands of life. In fact, it’s unlikely Therapy, the can happen even their loved one would have wanted Institute of to strong and them to cancel celebrations or close Contemporary competent people. their eyes to the beauty of the world. Psychotherapy, and social They may begin to Often when people are able to reframe workers from the New York City Central distrust their sanity because they feel so the situation this way, they are able to Union Council (AFL-CIO). They told us helpless. But in reality, it’s the situation move forward. that this was a new and helpful way of that’s crazy, not the person. Family members deal with working with families — especially after Ultimately, the best way to live with ambiguous loss each in their own way the events of September 11. ambiguous loss is to accept the and according to their own personal Just what is “ambiguous loss?” It’s a situation, not to deny or avoid it. timeline. This can create conflict when common reaction that occurs when Immediately after the attack, it was some members of the family are ready to loved ones are physically missing, but reasonable for families to hope that their accept the finality of the loss while there is no verification that they are loved ones might be found, either living others continue to hope. Family dead or alive. But it is also felt by many or dead. Years from now, this members need to be patient with each who fear that they have lost a terror-free will no longer be reasonable. other. They need to realize that there way of life. But if we are patient with is no “uniform time” to For most of the more than 4,000 these families now and We decide that a loved one is missing, there will probably never be support them in therapists may truly dead and gone. any tangible evidence of death. Even as visible ways, they have the most difficulty What I learned in New Mayor Guiliani told New Yorkers that may more easily with ambiguous loss. York is that we therapists “all hope is not lost,” he cautioned them move to a resolution Intolerance for often have the most problem to “prepare for the worst.” The families of their everlasting ambiguity may be tolerating ambiguity. It may be of the missing are now struggling with ambiguous loss, which our problem, not that we are the first who must “the worst.” will allow them to move the family’s. learn this lesson: people take It is hard for the mind and heart to on, even as they remember. their own time in resolving an accept death without a body to touch. ambiguous loss. If we are uncom- The absence of a body means that many TAKING TIME fortable with ambiguous loss — both of the usual ceremonies such as a But it is still too early to insist that such our own and that of others — and if we funeral mass or sitting shiva will not be families “get over it” and come to push too soon for what is unfortunately possible. The situation is very much like “closure,” a word I have come to dislike. believed to be “closure,” we may do that faced by families of soldiers missing We have told families in New York to more harm than good in our work with in action. They can’t start grieving take the time they need to decide what the families of the missing. because they don’t want to be disloyal to do and how to think of the missing — there’s always the possibility that the person. It’s a message that seems to give NO ONE TO BLAME missing person may be wandering them the greatest relief for right now. In these situations, there’s a natural around somewhere in a daze. But many At some point, most survivors will tendency to place blame on a supervisor now choose to wait for a clear declara- have to lean toward the decision that who insisted that men stay behind in tion of death through DNA verification. their loved ones are dead. For example, the World Trade Center, on a coworker Ambiguous Loss continued on page F14 Family Focus ❘ December 2001 F13 Family Focus On… Death and Dying

AMBIGUOUS LOSS continued from page F13 RESOURCES… continued from page 7 who asked for the morning off, or on a convinced than ever from the feedback neighbor who is of the “wrong” and the evaluations that the concept of end-of-life care, and provides easy to ethnicity or religion. ambiguous loss is useful to people from complete Advance Directives tailored to Spouses may reproach themselves different classes, races, cultures, and each state’s legal requirements. for encouraging their husband to take a religions as they struggle to recover and www.partnershipforcaring.org job at a company in the World Trade make meaning out of this terrible Center or wish they had insisted their disaster and the continuing threat of Supportive Care for the Dying. wife had taken a later train to work that terrorism with our borders. This coalition representing health-care morning. We talk with them about Learning how to live with ambiguity and Catholic organizations was founded letting go of this kind of cause-and- may be one of the greatest challenges for in 1994 as a response to demand for effect thinking or self-blame. Sometimes Americans who are accustomed to quick legalized physician-assisted suicide. The bad things simply happen even to good fixes and the assurance of safety in site includes “tools for change,” including people, and there’s nothing we did to everyday life. Yet there are some positive a series of organizational assessment cause such tragedies. lessons to be learned from ambiguous tools and questionnaires; back issues of loss. Such a loss can make us less Supportive Voice, a quarterly newsletter; WHERE DO WE GO FROM HERE? dependent on stability and more and useful links and other resources. My goal, from the moment I got that comfortable with spontaneity and www.CareOfDying.org anxious phone call, was to connect New change. We can learn to let go and take York City union members with family the risk of moving forward, even when Who Gets Grandma’s Yellow Pie centers and therapists in the city who we don’t know exactly where we’re Plate: A Guide to Passing on use a family systemic and contextual going. In a world of increasing uncer- Personal Possessions. approach. Therapists also needed to be tainty, this view may serve to decrease This site hosted by the University of Spanish-speaking and culturally knowl- stress levels for many people. Minnesota Extension Service provides edgeable and to know how to work with practical information about the inheri- families who have missing loved ones. Pauline Boss is the author of Ambiguous tance of personal property. This has been done. Loss: Learning to Live with Unresolved www.yellowpieplate.umn.edu Where do we go from here? What is Grief (Harvard University Press, 2000; clear to me is that those of us who work also available in Spanish); and Family in family therapy training programs have Stress Management: 2nd edition (Sage much to offer during this time of crisis Publications, 2001). For more informa- and uncertainty. And I am more tion, contact [email protected].

Coping with Ambiguous Loss Here are some suggestions we made to people with missing family members and to the therapists who will work with them:

• Gather as much information as possible. • Keep hoping, but at the same time, think It’s important for families — The posters lining the sidewalks of New about what to do if the missing person is and the therapists York are a testimony to this search for never found. Dual thinking is encouraged who work with them information. Families also need informa- because it allows for a glimmer of hope — to understand tion from FEMA as well as financial and while at the same time reinforcing the that moving insurance information. We need to help thinking that leads toward a memorial forward to a families find the right people to answer service and resolution of some kind. resolution their questions. doesn’t mean • While it’s difficult to find meaning in this closure. For • Talk to others about how you feel. To tragedy, keep talking with others about most people help people do this, we’ve organized the stress of not knowing. Therapists can there’s never any family meetings, multiple family meet- help families and couples if such conver- real closure. Even with a “clear-cut” death, ings, individual counseling, and religious sations cause conflict. Family members the door remains ajar. With an ambiguous meetings and counseling. will disagree with how they see the loss, the door may stay wide open for a very missing persons. Try to be tolerant of long time. each other’s views. —Pauline Boss

Family Focus ❘ December 2001 F14 Family Focus On… Death and Dying Grief: Intimacy’s Reflection by Brian de Vries, Ph.D, Professor of Gerontology, San Francisco State University

ach year, over 8 million Americans watching over the activities of the bereft. qualities of the relationship continue as experience the death of an imme- Many caregivers say they miss children continue to look to the parent Ediate family member and many providing care for their deceased loved for direction and affirmation that they millions more experience the death of a one and feeling needed. Some are fulfilling the parent’s expectations. member of their extended family, a researchers have described “role engulf- The pattern of grieving differs with lover, a friend, a companion animal, or ment” in which the “selves” of bereaved the death of the first or the second another intimate. Individuals respond to caregivers become eclipsed by their parent. At the death of the first parent, these losses in ways reflecting the nature caregiving role; after the death of their condolences are expressed primarily to and meaning of their relationships as spouse or partner, they feel they no the remaining spouse. The adult chil- well as characteristics of both the longer matter in someone’s life. dren may feel left out. An adult child grieving and bereaved individuals them- As one might may then assume more of a caregiving selves. These responses reveal the expect, gender role in relation to the surviving parent. intense emotional and cognitive efforts differences are At the death of the second parent, there expended by the bereft evident. The may be a vivid re-experiencing of the as they cope kinkeeping role impact of the first death. When both with and try to played by wives, parents have died, adult children experi- make sense of combined with ence changes in self-perception and the their loss. As men’s greater meaning of time. The now orphaned one researcher likelihood of children become the oldest living observed, grief “is the identifying generation of the family, a role replete study of people and their their spouses with new roles and responsibilities. most intimate relationships.” as confidants There is no generational buffer between Intimacy has both affective mean that bereaved the surviving individual and death. and cognitive dimensions that husbands are often socially Sons and daughters respond to a include giving and receiving assis- and emotionally vulnerable. parent’s death in ways anticipated by tance, physical contact, behavioral inter- The effect of losing a husband traditional gender roles: sons are actions, nurturance, and reassurances of appears more complex. Although some somewhat more stoic and less expressive worth. The intersection of grief and women, freed of the constraints of and daughters more connected to the intimacy offers a unique opportunity to married life, blossom in their widow- deceased and more likely to report highlight the intimate components of hood, many bereaved women express depressive symptoms. The research grief in its broadest sense. loneliness. They are “pining for lost also suggests that the relationship lives”: their husband’s life and their between daughters and their fathers THE DEATH OF A PARTNER own. Some widows, especially those of may be uniquely manifested in the To be sure, the loss of companionship lower socio-economic status, “sanctify” bereavement process. and romantic intimacy is an important their deceased husbands both to keep aspect of loss and grief. But the loss of a their connections to them and to bolster THE DEATH OF A CHILD spouse also means daily strains, such as their own self-esteem. If a woman was Researchers and clinicians have doing the laundry or paying bills. The married to a saint, she must have been frequently failed to acknowledge an bereaved husband or wife must face worthy. adult as someone’s child and that the daily tasks without the assistance of the death of an adult child is a parent’s loss. deceased — repetitions that serve over THE DEATH OF A PARENT Parents identify with their children; long periods of time as reminders of It is estimated that each year, five children represent extensions of parents, what has been lost and what is missing. percent of Americans lose a parent to their hopes and dreams, and the selves Expressions of stress, distress, and death. The death of a parent in mid- or the parents could not or did not achieve. depression are the manifestations of later life is an “on-time” loss, part of the A child’s death has been described by these reminders. natural order in which the old die before parents as an “amputation.” This Many individuals report ongoing the young. The normative nature of amputation creates “an empty historical communication with the deceased. This this loss, however, does not diminish track” for many bereaved parents. is not the stuff of séances or extra- its impact. For example, parents report that their sensory experiences; it is a sort of The tie between parents and now deceased child would have been “checking in” and wondering what the children spans the total life course and married and have children of his or her deceased would think or do at a partic- assumes multidimensional forms own by now. The deceased child ular occasion. It is dreaming of the throughout. Death does not sever this continues to occupy a part of the deceased and believing that they are tie. Some claim that the essential parents’ inner world. Intimacy’s Reflection continued on page F17 Family Focus ❘ December 2001 F15 Family Focus On… Death and Dying Working with Grieving Families from a Meaning- Making Perspective by Janice Winchester Nadeau, Ph.D., Marriage and Family Therapist, Psychologist and Nurse in private practice at Minnesota Human Development Consultants, Minneapolis

rief is a family affair. Most of to others in the family, believed she had death with other what we know about grief is not called 911 or had called too late. deaths, as Gfrom an individual perspective. Their disconnection hampered their another strategy Much can be seen that is useful in family meaning-making. for making sense understanding and helping those who Another strategy that families use is of their loss. grieve when grief is viewed through a coincidancing, my term for the dance- Comparisons family lens. My 25 years of working in like ways in which members use seem to help the death and dying field have coincidental events to imbue the death families establish convinced me that the meanings families with meaning. Most families coincidance themselves along attach to the death of a family member and many family stories are built around a continuum of significantly affect their grief. coincidences. From the helpers’ greater or lesser Of particular interest to me is the perspective, the meanings assigned to Janice Winchester loss. Families process by which members interactively the so-called coincidences are like Nadeau, Ph.D. who lose older construct meaning. I call this process, family ink blots, revealing the intricate members often “family meaning-making.” The family design of family meaning systems. refer to losses of younger members of that construes a member’s death as a One family who lost an elderly the family or of violent deaths of young relief from pain will grieve differently member was concerned that it was people outside the family. They then from the family that construes the death raining as they drove to the gravesite. construct the meaning that their loss as premature and preventable. At the grave, the sun came out just long could have been greater. Asking families Furthermore, when helpers pay atten- enough for them to complete their how the loss of a particular family tion to family meaning-making, they can ritual. Once back in their cars, it began member compares to the loss of others determine if help is needed and, if so, to rain again, and they began “coincid- can stimulate the family meaning- how to tailor-make interventions. In ancing.” Why had the sun come out just making process. order to make sense of the death of a then? Some said it was God. Others said Finally, families make meaning by family member, families use interactive it was Grandmother, herself. One son- using family-speak. This includes asking strategies to construct meanings. in-law said, “It was a coincidence, and each other questions, referring to each nothing more.” Family meanings were other’s meanings, agreeing, disagreeing, STRATEGIES OF GRIEVING constructed as they talked over lunch. interrupting each other, and finishing FAMILIES Another common strategy is the use each other’s sentences. Family-speak The most common strategy families use of dreams. Family members talk to each reveals meaning as the product of a to make sense of their loss is telling the other about their dreams, and this fuels family interactive process. When fami- story of how the death occurred. In our the family meaning-making machinery. lies use family-speak, the meanings are haste to move people toward a less Through recounting dreams, unpopular shared by all family members and do painful place in their grieving, we may or secret meanings come out. Dream- not originate with any one of them. deny them one of the most powerful sharing can provide ways of staying ways of making sense of their experience. connected to the one who died and help MEANINGS OF DEATH One elderly widow told the story of resolve unfinished business. Many types of family meanings emerge how her husband had died on the couch Sally, a member of a family who lost after a death occurs. These may involve while she was in the kitchen making a middle-aged member named Ann, religious beliefs, fate, and reunions in the dinner. She noticed that he was quiet shared a dream that included many of afterlife. Often meaning statements are and ran to his side. Unable to find his Ann’s eight siblings. Sally, who had about what the death does not mean. In pulse, she called 911. When the never expected Ann to die, had been one family a young father died in a paramedics came, she stopped them having trouble sleeping since Ann’s private plane crash. Family members said from “ripping off his shirt and cutting death. Sally told of how Ann had come his death did not mean that he had him open.” She said the night before he to her in a dream. She let Sally know wanted to die. This allowed them to rule had dreamed of his mother in heaven. that she had found peace. After sharing out suicide or having a secret death wish, The meanings in the widow’s story were the dream, Sally was able to sleep as they put it. Many families say that the that she had protected her husband from soundly. Asking about dreams is a death was not God’s will. Listening care- harm and that he had been ready to die. meaning-making catalyst. fully to not statements can help us track a Some of her children, who did not talk Families also compare the current family’s meaning-making journey. Grieving Families continued on page F17 Family Focus ❘ December 2001 F16 Family Focus On… Death and Dying

GRIEVING FAMILIES continued from page F16

Another interesting group of mean- HELPING FAMILIES family meaning-making in this way ings is what the deceased would say his How can we help grieving families make allows helpers to enter the world of or her death meant. These meanings are sense of the death of a family member? grieving families, to stand by them in often guessed at and recited within the First, listening is an intervention. moments of great pain, and to walk with family. They may or may not bring Eliciting dreams, making comparisons them in their quest for meanings that comfort. One family’s husband and among deaths, asking about coinci- help them go on living. father died suddenly in his sleep. His dences, promoting family-speak, and survivors found comfort from papers in validating meanings all go a long way Janice Nadeau is the author of Families his bureau giving direction to his family toward helping families tell their story. Making Sense of Death, Sage, 1998. For in case of his death, including scripture It is important that helpers respect the more grief resources, visit her web site at that indicated his belief in heaven. family’s own meaning-making process, www.DrJaniceNadeau.com or contact her Meaning? He had anticipated his death rather than imposing his or her mean- at [email protected]. even if they had not. ings upon the family. Working with

INTIMACY’S REFLECTION continued from page F15

Society in general often does not experienced. Each year from one-third facilities, employers, and other social appreciate the enormity of this loss. to one-half of adults over 55 lose a close institutions often exclude friends during Well-intentioned friends and others may friend to death. the dying process and grieving rituals. encourage the parents to “move on with Friends assume their position Understanding the ways in which their lives,” avoid them altogether as if in our lives by choice — theirs individuals respond to the death of a they were contagious in some way, or and ours — and friendships friend offers a vehicle for under- avoid mentioning the deceased child’s arise out of these shared standing friendships in name for fear of upsetting parents. The values, interests, activities, Death general, an individual’s bereaved themselves may avoid new and experiences. Because marks the end of role in this context, and situations and interactions; they wonder friends tend to be similar a life, not the end of the intimacy that is a how to answer the question, “How in gender, age, and a relationship. part of this experience many children do you have?” without socioeconomic standing, and is continued in denying many years of an important the death of a close solitude by the bereft. relationship or exposing unsuspecting friend may serve to confront individ- others to their tragedy. uals with their own mortality, evoking RELATIONSHIPS CONTINUE Older mothers say their experience the fear that “it could have been me” Death marks the end of a life, not the differentiates them from their husbands and the relief that “it wasn’t.” The death end of a relationship. The finality and who could father other children if they of a friend means not only the loss of unchanging nature of death must be chose; older fathers have reported on the the relationship, one’s role in it, and seen in the context of the ongoing futility of their hobbies, crafts, and skills mattering to someone chosen as an nature and the fluidity of connections because they can’t pass them on. These intimate, but it also means the loss of an with the deceased. In this perspective, gender differences, although smaller important basis of comparison and an grief is not only the response to what than those reported by younger parents, important self-referent. once was, it is also evidence of what may complicate interactions between For the oldest old, the death of a persists. For those whose professional elderly partners. The symbolic presence friend is placed in the context of their and personal practice brings them into of the deceased child and the intimate history of loss and in the context of their contact with the bereaved — which by role the child has played in the lives of life course. Many reported a profound some accounts would be all of us all of the bereft parents structures the social sense of sorrow because they had the time — it is important to recognize relationships and self-concepts of the outlived all that was important to them. these continuing bonds. parents and is the essence of their grief. One woman said she missed “not being necessary to anyone.” Others made Adapted with permission from Generations, THE DEATH OF A FRIEND frequent reference to activities that they 25(2):75-80, Summer 2001. Copyright (c) Older parents have been described as could no longer participate in. These 2001 American Society on Aging, San the forgotten grievers; friends of all ages included conversations, reminiscing, and Francisco, California. To order a copy of may be described as the neglected or attending church or social events. this issue, contact (415) 974-9617 or visit abandoned grievers. This inattention The “role of bereaved” tends to be www.generationsjournal.org. For more stands in dramatic contrast to the confined to family members. Friends are information about Dr. deVries’ research, frequency with which this loss is left to fend for themselves. Health-care contact [email protected].

Family Focus ❘ December 2001 F17 Family Focus On… Death and Dying

Traumatic Loss and the Family by Kathleen R. Gilbert, Ph.D., CFLE, Associate Professor, Department of Applied Health Science, Indiana University

n September 11, the United happen? Why my loved one? How did it • gender-based differences in grieving States experienced traumatic happen? What can I do to prevent it styles, and the expectation that O loss at a level that was, until from happening again? everyone will grieve in an emotive then, unimaginable. The aftermath of In less intense times, the family and social way; and traumatic loss is uniquely intense, serves as a primary source of confirma- • developmental differences in grief putting incredible strain on the tion of the reality of the experience of style, coupled with a lack of knowl- family. Yet, it is possible for fami- its members. With a trau- edge about what grief typically lies to experience such a loss matic loss, family resembles at different developmental and survive it intact. Families members may find stages. can experience themselves particularly WHAT IS A TRAUMATIC traumatic loss and in need of this form of DIFFERENTIAL GRIEF LOSS? survive it intact. family social support. The factors listed above contribute to a A traumatic loss is one that Unfortunately, family phenomenon I have identified as differ- is sudden, unanticipated, members may be the ential grief, in which family members and outside the normal range of people least capable of providing are grieving in unique ways, at a unique experience. These losses profoundly that support. pace, dealing with ideographic issues. overwhelm the resources of the Although family members may feel a bereaved, leaving them feeling helpless. COMPLICATING FACTORS sense of common purpose at the outset Grief that results from traumatic loss Certain factors can confound the ability of the crisis, as they each struggle with differs from “normal” grief in several of family members to be available to their own loss, they find it increasingly ways: there is no time to anticipate the each other. For example, the difficult to “hang together” as death; a generalized sense of horror, deaths that resulted they work through their helplessness, and loss of control is ever- from the terrorist grief. The interaction of present for the bereaved; their lives feel attacks were violent these differences and disordered and disjointed, and they now and mutilating; most related conflicts may come see the world as a dangerous place. The were out-of-sequence together to place tremendous process of resolving traumatic grief is in the life cycle; they strain on the family. almost guaranteed to be complicated were ambiguous and drawn-out. Resources available to because few bodies FAMILY HEALING PROCESS the bereaved before the death may not were recovered; and Given the fact that an identical be available: their social network may the initiating agent experience of loss is highly unlikely, now be gone or reduced, and supporters was human-made and if not impossible, how then may feel overwhelmed and inadequate intentional. can grief be to the task of helping. Tangible In addition to resolved in resources may be depleted. Their health contributing factors the family? may suffer as the stress of their grief related to the And how impairs their immune system and causes death, other can the other stress-related health problems to factors can compli- family develop. cate the grief resolution remain intact process within the family. These include: after a traumatic death? Families must FAMILY RELATIONSHIPS AND • the relationship of family members complete three essential tasks if they are TRAUMATIC LOSS with the deceased and any unre- to resolve their grief. First, they must When a crisis like a death occurs, the solved issues remaining after the recognize the loss and acknowledge the family is thrown into disorder. The death; grief felt by all family members. family is disrupted and, in order to • the relationship between bereaved Secondly, they must reorganize after the continue to function, must somehow family members and the legacies of loss so that essential functions can be regain some sort of stability while their past; carried out. Lastly family members must shifting the various responsibilities • the personal resources of the indi- reinvest in this new family, by working among the remaining family members. vidual family members; together to redefine what “family” now With a traumatic loss, family members • resonating grief, that is, the tendency means. need to answer questions as they of one’s expression of grief to “set In my work, I have found families attempt to make sense of the death. off” other family members; use a number of “tools” to achieve They may ask questions like: Why did it • competition in grieving; these tasks: Traumatic Loss continued on page F19

Family Focus ❘ December 2001 F18 Family Focus On… Death and Dying

TRAUMATIC LOSS Parent Grief continued from page F18 by Paul C. Rosenblatt, Ph.D., Professor, Department of Family Social Science, University of • Open and Minnesota honest communica- n a hot summer day, Bobby, an and yet there was much in the interview tion. If grief adventurous three-year-old, kept that echoed what I have heard from is to be a O returning to the most dangerous other bereaved parents I have inter- collective place on the farm. Mom, Dad, and viewed as part of my research. Like experience, Grandma repeatedly stopped him and many other bereaved parent couples, members warned him, but late in the afternoon they felt isolated from one another. must be able Bobby eluded everybody and rode his Their views differed about important to communi- trike to that one place where anyone’s things connected to the death. Their cate clearly life would be in danger. Bobby died parenting of their other children was with each Kathleen R. Gilbert, minutes after the ambulance brought entangled in complicated ways with other. Ph.D., CFLE him to the nearest trauma Bobby’s death. They struggled to main- Although it is hospital. tain a spiritual connection difficult, family members must espe- with Bobby, and they differed cially engage in the simple but diffi- THE ISOLATION OF In in how and when they cult act of listening to each other. GRIEF the grief following a grieved. The process may be slow, though, as I interviewed Bobby’s child’s death, parents each family member has limited parents, Kris and and community members COMMUNITY resources after a loss. Eric, six years after may take a new look at RESPONSE Bobby died. Kris said public services and Like lots of bereaved • Shared rituals. These facilitate the that she and Eric had policies. parents, Kris and Eric family healing process and can never talked very much experienced an out- include funerals and religious rites, about the death and that as a pouring of community support at but should also include personal result there was a big wall between first, but soon the support dropped family rituals like shared dinners. them. Eric said he couldn’t talk, because away. Some people avoided them, and it hurt too much. During the first some, perhaps not understanding that • Shared sense of purpose. This may minutes of the interview they seemed to parent grief is often a lifetime thing, consist of such things as family avoid looking at each other. But soon seemed impatient for them to get on members spending time together or they were talking to each other much with their lives. working together to achieve goals. more than to me. They poured out their At church, some people offered hearts, weeping, speaking of their pain, them religious formulas for dealing with • Acceptance of differences. Rather their self-blame, their loneliness, how grief. These formulas were not than striving for a single view of the much they missed Bobby, how helpful, and, as a result, Eric loss, or promoting a single style of hard everything had been since decided to stop attending grieving, family members need to Bobby’s death, and how church. If you had been a recognize similarities in their grieving much they hurt for neighbor or someone at and to reframe differences as strengths. each other. their church, I would I could say it have advised you to • Sensitivity to each other’s needs. was an easy inter- check in on Eric and Each member of the family experi- view. They had so Kris periodically and ences the loss in a unique way. much to say, not to assume that When necessary, family members they wanted to you would know should be encouraged to seek out say it, and they where they were outside help through support groups were eloquent and nondefensive. in their grieving or individual therapy. I could also say it was an extraordi- process. It would have narily difficult interview. Their pain was been best not to offer unsolicited advice, • A positive view. Striving to see the intense, and they both wanted me to but instead to ask them, at a time and best in oneself and other family help them make this much more than a place that was appropriate, what was members can help to buffer stress research interview, to create a place of going on with them, and then to listen, and make family members more safety where they could say all that they really listen. receptive to each other’s overtures. hadn’t been able to say, and by doing so, If you were a teacher or adminis- destroy the wall between them. trator at the junior high school attended For more information, contact Everything they said was unique to by Eric, Jr., Bobby’s oldest sibling, you [email protected]. who they were and what had happened, would know that beginning about eight Parent Grief continued on page F21 Family Focus ❘ December 2001 F19 Family Focus On… Death and Dying

Dealing with the Violent Loss of a Child by Carol Werlinich, Ph.D., Director, Family Service Center, University of Maryland, College Park

he death of a child is traumatic, gun — this was the most common but no one can or should fill the spot but the murder of a child is beyond instrument of death. of the one I have lost. Tendurance. The FBI estimates that The interviews included a descrip- an unbelievable average of 14 children tion of the murder; experiences with the • Don’t be shocked that I think long are killed per day in the United States. criminal justice system; questions about and seriously about suicide — not so Parents of Murdered Children the grief process over time; informa- much about doing it, but mostly I (PMOC), a support group for tion about family members simply wish I weren’t alive. families who have lost a child and how each family Sometimes, even often, I am disap- to murder, member was affected by pointed when I wake up in the estimates that each the murder from the morning that I must live another day. homicide affects, at mother’s vantage point; a minimum, seven the use, value, and • Don’t be surprised that my husband or to 10 people. The timing of resources partner and I grieve differently or trauma of painful loss utilized by the even that our marriage may be is exploding into the family; and lastly, suffering. Did you know that folks lives of more and an exploration of the often ask him how his wife is doing more people. I most and least helpful and seem to forget that he is suffering studied the loss of aspects of therapy for also? a child to murder those who utilized this from a mother’s perspective. resource. These interviews • Don’t be alarmed that I go to the What I learned may be of help to thera- were scheduled for one hour (and cemetery often, or conversely, that I pists who find themselves struggling could have been completed in that never go at all. Grief is expressed in a with their clients’ issues of death and time), but typically averaged over two wide variety of ways. loss. hours in length. What did I learn which might be of WHAT PROFESSIONALS NEED THE MOTHERS AND THEIR value for therapists? Certainly, data from TO LEARN CHILDREN the study support the idea that families • I’ll size you up and decide if I can tell I conducted extensive telephone inter- of murdered children constitute an “at you any of these tough things — like views with 40 mothers of murdered risk” group who have special needs in that I have “visits” from or dreams of children who live all across the United therapy. The salient messages these my dead child and this comforts me States. The participants also completed a mothers reiterated focused on sometimes but also scares me, too. battery of standard instruments that three general themes: listening, they mailed to me after the interview. learning, and linking. These • Spirituality may The mothers who participated in this mothers expressed bring me one of my study were mature, averaging 53 years THE IMPORTANCE OF their desire to have few comforts, but I may of age. Thirty-seven — 95 percent — LISTENING someone benefit also struggle with how were Caucasian. The marital status of In vehement and varied from their pain. such horrible things can these women (over two-thirds were ways the mothers almost be allowed by a benevolent married) had not changed since the shouted a list of “don’ts”: God. murder. However, many women did report that the murder had seriously • Don’t try to fix it. • I struggle with my anger, my fear of impacted their marriages, and some how ugly and painful my child’s death women expressed uncertainty about • Don’t say you understand. was, my overwhelming sadness, my how, or if, the difficulties would aloneness. ultimately be resolved. • Don’t expect me to feel better; “it” Who were the murder victims? gets “softer”, not better. • I need to know I am not crazy. Fourteen daughters and 26 sons were Therapists must understand the the family members lost to violence. • Don’t do anything, but listen to my grieving process and validate the These children ranged in age from 14 to pain. Don’t be afraid of it and don’t “normal” feelings of loss. Post-trau- 38 years old, averaging 22 years of age. rush me. matic stress response (not disorder) is The causes of death were varied and completely normal. often involved multiple weapons. • Don’t remind me that I have other Fourteen children had been killed by a children and family alive. I know that, Violent Loss continued on page F22

Family Focus ❘ December 2001 F20 Family Focus On… Death and Dying

VIOLENT LOSS continued from page F20

• I do not need the burden of teaching as Parents of Murdered Children and parent is losing your past, while losing a you, the professional. Learn about the Compassionate Friends. Attend meet- child is losing your future. The mothers important systems that I will have to ings of the varied support groups I interviewed expressed their desire to navigate, such as, the court and parole yourself; therapists who have first- have someone benefit from their pain; systems, victims assistance programs, hand experience will have the greatest that was one of the reasons they agreed and other federal and state initiatives. credibility. to participate in the study. Their message was clear: expect diversity in • I need professionals to be familiar • Take care of yourself: get yourself a dealing with loss and know that the with and suggest (but never impose) support group and talk over your own process is a never-ending journey. They reading materials or varied resources experiences regularly. If you cry exces- have taught me a great deal about cata- which might be helpful at different sively in sessions, I will have to stop strophic loss and the place of therapy in times in the grieving process for my grieving to take care of you. the struggle. different family members. Intuitively, we all know that the For more information, contact THE NEED FOR LINKAGES murder of a child is the most horrible of [email protected]. • Link families to self-help groups such all losses. It has been said that losing a

PARENT GRIEF continued from page F19 months after the death, Eric, Jr., got into trauma care and more knowledgeable to talk if he had been able to stay close a lot of trouble. He was truant, fought about the hospital’s resources. to home in the weeks following Billy’s with other students, and lost interest in The couple’s grieving process was death. But his need to go back to work schoolwork. Eric, Jr., was lucky to be also affected by a lack set up a pattern of not talking that going to a school where the counselor of bereavement leave. resulted in the wall that separated them. knew something about grief and was Like many Finally, the couple was affected by comfortable talking with grieving farmers the limitations of their health insurance teenagers. The counselor helped coverage. Although Eric and Kris had Eric, Jr., to turn things around good medical insurance through Eric’s for himself. The counselor also employer, the insurance plan offered no helped Eric’s parents to under- coverage for bereavement counseling. stand what was going on The nearest support group for bereaved with their son, and to think parents was 45 minutes away, and it met about ways to help him. during a time Eric had to milk the cows. The school counselor had some PUBLIC SERVICE AND expertise in dealing with grieving POLICIES teenagers, but dealing with grieving In the grief following a child’s parents and families wasn’t part of his death, parents and community job. The couple’s pastor was members may take a new look these days unhelpful. Practically speaking, the at public services and policies. For who need extra couple had nowhere to turn for Billy’s father, his son’s death said lots income to make ends bereavement help. For six years they about emergency care in rural areas. meet, Eric had a full-time off-farm job. had been terribly distant from each Perhaps Billy would have died anyhow, Most workers have at least some sick other. The obvious policy question is: but it took close to an hour from the leave, but few employers offer their When and how will bereavement care be time Billy was injured to the time he workers adequate bereavement leave. provided — for individuals, for couples, was brought to the closest trauma Eric’s employer offered only enough for families? hospital. The doctor on duty was a new bereavement leave so Eric could attend resident, relatively new to trauma care his son’s funeral. The day after Billy was Paul Rosenblatt is the author of Help and so new to the hospital that he didn’t buried, Eric was back at work. His job Your Marriage Survive the Death of a even know what supplies were on hand. involved considerable physical danger, Child and Parent Grief: Narratives of Perhaps with different public invest- and Eric felt that he was a danger to Loss and Relationship. ments, Billy could have arrived at the himself and his coworkers for quite a For more information contact him at hospital more quickly and have been while after he returned to work. Kris felt [email protected]. seen by a doctor more experienced at that she and Eric might have been able

Family Focus ❘ December 2001 F21 Family Focus On… Death and Dying Helping Adolescents Cope with Grief by Joyce A. Shriner, M.S., CFLE, Family and Consumer Sciences Agent, Hocking County, Ohio State University Extension; and Ted G. Futris, Ph.D., CFLE, Family Life Extension State Specialist and Assistant Professor, Dept. of Human Development and Family Science, The Ohio State University

ecause they are often unexpected and may limit their expressions of grief to facilitate communication about the loss, traumatic, adolescent deaths brief outbursts because they are very memorializing the deceased, encour- Bprofoundly impact communities. concerned about how they are perceived aging expression of grief, and achieving With the increase in school shootings and by others, and they worry about losing a sense of closure for the adolescents. youth violence, there is a growing need for emotional control. Caring adults can Suggestions include creating a memory communities to develop and implement a reassure adolescents that grief is a book, cards, or collages; collecting response plan when traumatic deaths unique experience for everyone and that letters or assignments written by or to occur. Yet survivors reports that school what they are going through is normal. the teen; displaying a memorial plaque; personnel, such or planting a memorial tree or garden in as teachers, ENCOURAGE RELATIONSHIP the teen’s name. At school, teachers can counselors, and TRANSFORMATION help classmates make decisions about nurses are often Encourage survivors to maintain an what to do with the empty chair in the not supportive. attachment to the deceased. Some of the classroom. Involvement in activities Here are some ways that adolescents preserve the bond such as these provides healing for the ways that schools, between the deceased and themselves adolescents, as well as the family. community include visiting the cemetery, believing While most memorial activities are professionals, and in a spiritual realm, praying or talking truly beneficial, care should be taken to youth leaders can with the deceased, keeping possessions avoid overdramatization or glorification, ease the trauma that the deceased valued, or placing especially in the case of suicide. during future items representing things the deceased Appropriate activities in this situation Joyce A. Shriner, M.S., crises. valued (such as pictures, notes, sports include raising funds to support a CFLE equipment, favorite hat, or class ring) worthy cause, contributing to a suicide DEVELOP A in the casket. Adults can affirm the prevention program, or donating to a COMMUNITY- value of these behaviors and help mental health project. BASED adolescents place their relationship with RESPONSE the deceased in a new perspective. PROVIDE APPROPRIATE SUPPORT PLAN Not surprisingly, most adolescents do not Community- FACILITATE COMMUNICATION want to discuss their feelings of grief with based response Adults may suggest creative ways to school personnel. They do, however, plans can mini- Helping Adolescents continued on page F23 mize the negative effects of crises and enhance the Learn How You Can Help Ted G. Futris, Ph.D., opportunities for CFLE positive growth. Here’s a list of organizations that can provide information and Typically, school resources for adults who want to help grieving children and teens. personnel, community leaders, media contacts, and family representatives work American Academy of Child & Adolescent Psychiatry together to create a plan. Most plans provides resources for parents and teens. www.aacap.org involve preparation, team-building, training, and long-term follow-up so that Center for Mental Health Services has a clearinghouse for mental health information in all members of the community-response English and Spanish for families, children, and adolescents. www.mentalhealth.org/child team understand their specific responsi- bility during a crisis. Dougy Center, The National Center for Grieving Children and Families is a national support center. www.dougy.org REASSURE ADOLESCENTS THAT GRIEF IS A UNIQUE EXPERIENCE GriefNet offers 30 e-mail support groups and two web sites. It includes a moderated chat Adolescents often believe that their grief room for children who are in grief and their parents, lists of books, newsletters, a directory is unique and incomprehensible to of suicide prevention and survivors’ information, and more. www.griefnet.org anyone else. Some may find themselves reacting in new or unusual ways, which UCLA School Mental Health Project provides schools and teachers with resources for frightens them, causing them to think helping children. http://smhp.psych.ucla.edu that their reactions are abnormal. Others

Family Focus ❘ December 2001 F22 Family Focus On… Death and Dying

Elder Grief by Felix M. Berardo, Ph.D., Professor of Sociology, University of Florida, Gainesville

or most of us, recovering from a the community. These new patterns of far more frugal life-style. significant emotional loss is a behavior are critical to sustain personal For some widowed persons, the F difficult task. This is particularly equilibrium. Roles must reassigned, emotional burden of acute sorrow true for those who have entered the later status positions shifted, and values becomes unbearable, and they may feel stages of the life-cycle. It is especially reoriented. compelled to resort to escape mecha- difficult for older It is important not to underestimate nisms, such as fainting, excessive persons who, the complexity of loss events and the drinking, or medication. Others may having spent contexts in which they occur, as well as breathe a sigh of relief because a bitter decades in inti- their historical antecedents. The loss of or disharmonious martial relationship mate association a spouse may or may not mean the loss has finally been dissolved, or because a with a spouse or of a sexual partner, companion loved one has at last been freed from significant other, accountant, or gardener, depending on pain and suffering. In many instances, it to deal with the the roles the spouse fulfilled. If the is only when the deceased is finally loss of that spouse was the “designated driver,” the buried that disbelief fades and the reality partner. newly widowed person may have to of the circumstances emerges and is begin using public transportation or gradually accepted. Felix M. Berardo, Ph.D. WIDOWHOOD taking a cab. If the deceased husband or Death dramatically terminates The death of a wife was a caregiver, the remaining habitual family relationships, but mental partner requires partner may need to sell the house and acceptance of its finality usually comes the development of alternative patterns move to different environment, such as slowly. Habitual responses built up of behavior if the surviving spouse and senior housing, assisted living, a nursing through a long period of intimate other members of the family are to home, or the home of an adult child. In interaction and interdependence in maintain satisfactory relations within some cases, a husband’s pension may die family living are not quickly nor easily the family, with the kin group, and with with him, forcing the widow to adopt a extinguished. Elder Grief continued on page F24

HELPING ADOLESCENTS continued from page F22 Book Helps appreciate being put in contact with an school personnel are present at family Grieving understanding peer. Adolescents rely on visitations and funerals. Teenagers often Children peers for emotional support (for example, attend these services without parental being there, listening, or reminiscing) and support and may need the support of a Jacqueline for clues in how to respond to each other. familiar adult.” Adolescents also appre- Britton has To support the bereaved, adults can ciate tangible support from adults such written a book to help children cope talk with the bereaved student’s peers and as flowers, cards, food, transportation, or with grief. The main character is Herman, stress the fact that their friend needs their funeral home visits. the hermit crab, who travels through time help and that he or she would likely and meets a little boy whose grand- appreciate them asking what it is like to DO NO HARM mother has died. The book’s message is lose someone close. Adults can also let Researchers have learned that the bereaved that children have a right to cry, that they peers know that retelling the story often are offended and hurt by some support will feel lonely, but that someday they helps the bereaved to begin to make sense attempts. Behaviors that are considered will feel better. The book, Herman and out of what has happened to them. unhelpful include saying, “I know how the Boat, is the second in Britton’s Because such conversations are often you feel,” encouraging a speedy recovery, Herman the Hermit Crab series. It will be painful for the bereaved, they should be giving advice, minimizing the loss or available online this spring through initiated only if one is able to deal with the forcing cheerfulness, and intentionally Synergebooks.com. teenager’s reaction. avoiding the use of the deceased’s name. It is also important for adults to be Failing to acknowledge that the death has Britton is a senior a California State familiar with the deceased’s background. occurred can also be offensive and hurtful. University, Sacramento, where she is Then they can help teach proper funeral majoring in history and ethnic studies. home and family visitation etiquette as For information or to request a copy of She is president of the campus Inter- well as culturally appropriate practices. the curriculum “Helping Adolescents Tribal Student Alliance. Contact her at One researcher notes that “It is helpful Cope with Grief,” contact shriner.3@osu. [email protected]. to the family and to the students if a few

Family Focus ❘ December 2001 F23 Family Focus On… Death and Dying

ELDER GRIEF continued from page F23

The widowed show considerable successive demise of an older person’s result is often highly individualistic variation in concluding their grief work, friends and loved ones is often accompa- reactions to the actual death of spouses, some doing so within months, others nied by various personal, physical, relatives, and friends, or their “living sometimes taking years to adapt to life mental, social, and economic losses as death” as a result of Alzheimer’s disease without their mate. A small minority of well. Many older people find or dementia. Some variability in grief elders never do get over the trauma of themselves overwhelmed. responses can be attributed to their loss. With help, however, most Researchers have personal resources or eventually adapt to their new circum- suggested that many negative Many qualities that make stances, are able to manage their daily behaviors we associate negative behaviors coping easier, such as lives, and maintain a sense of purpose with old age are the associated with old good health, sufficient and personal satisfaction. result of “bereavement age are the result of financial resources, or a overload.” Many older “bereavement sense of optimism and AMBIGUOUS LOSS people are already overload.” self-efficacy. Grief can be As Pauline Boss has pointed out, experiencing personal, exacerbated if additional loved unresolved grief — that is, grief that physical losses such as one die or become incapacitated, cannot easily be brought to closure — impaired vision or hearing, thereby requiring simultaneous grieving. is often associated with ambiguous loss. limited mobility, or stroke-induced The extent to which others can This results from a wide range of problems with speaking or reading. On provide assistance to the bereaved can situations in which an incomplete or top of that, they experience multiple influence the pattern of recovery. uncertain loss has the effect of freezing bereavements as spouses, friends, Available confidants and access to self- the grief process and thereby preventing neighbors, and sometimes even adult help groups can help counter loneliness, its completion. One example of this is children die in rapid succession. promote the survivor’s reintegration the anguish suffered by families of It becomes increasingly difficult for efforts, or help a caregiving spouse cope soldiers missing in action. Ambiguous older persons to respond fully to new with the ambiguous loss of a loved one losses in personal relationships can be deaths while they are still emotionally with dementia. Community programs more stressful or devastating than a involved with previous deaths. that offer education, counseling, and clear-cut loss through death. Individuals living in long-term care may financial services can also help widowed Many older people experience resist making new friends since “they’re elders and their families to restructure ambiguous loss when a husband or wife just going to die anyway.” their lives. Programs that provide respite develops Alzheimer’s disease or another care for fragile elders or those suffering form of dementia. Although they are CONCENTRATED LOSSES from dementia can help caregivers still married to a living spouse, that Loss in modern society has been experience a few hours of “rest and person slowly slips away until he or she increasingly concentrated in the later recreation,” including time to see no longer exists. In a sense, their spouse stages of the life cycle. This means that friends, do errands, take a walk, or visit is both dead and alive, and they are both older survivors, in particular, are left the doctor or dentist. widowed and married. with a limited supply of time, energy, To be most effective, such services and opportunities to establish new and should remain available over long BEREAVEMENT OVERLOAD meaningful emotional attachments. periods of time. As the population ages, Extreme grief behavior among some Older caregivers may face isolation services of this kind will become even older people may come from having to and depression because they are always more important for elders and their deal with a succession of bereavements, “on duty.” families. sometimes in overlapping time frames, Emotional and behavioral responses which may interfere with the comple- reflect each person’s idiosyncratic For more information, contact tion of the mourning process. The circumstances and contingencies. The [email protected].

Family Focus is now on our web site! Visit our web site at www.ncfr.org to read additional articles that we couldn’t include in the print edition of Family Focus, due to space limitations.

N ATIONAL COUNCIL ON FAMILY RELATIONS 3989 Central Ave. N.E., Suite 550, Minneapolis, MN 55421 Phone: 763-781-9331 • Fax: 763-781-9348 • E-mail: [email protected] • Website: www.ncfr.org Copyright © 2001 by the National Council on Family Relations. One copy of any portion of this publication can be made for personal use. Additional reprints of this publication are available by contacting NCFR headquarters at the address above. Bulk rates available.