Bereavement Services Provided Under the Hospice ...

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Bereavement Services Provided Under the Hospice Model of Care Stephen R. Connor and Barbara Monroe

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ospice, as a philosophy of care, has always considered the provision of bereavement support to be a key characteristic or standard of practice.1 Since the International Work Group on Death, Dying and Bereavement (1979) published Assumptions and Principles Underlying Standards of Care for the Terminally Ill, virtually all hospice standards have included an expectation that bereavement services be provided to families usually for a minimum of one year after the death of the patient. In this chapter, the provision of bereavement services through American hospice programs will be examined with a focus on the types of services that are commonly offered to both hospice families and those in the community who have suffered a death-related loss. Also discussed will be the impact of recent bereavement research on the provision of bereavement services by hospice providers. A case description of bereavement service offered through St. Christopher’s Hospice in the United Kingdom will be used to highlight some of the challenges and opportunities faced by hospices providing bereavement services.

Hospice Bereavement Services in the United States The services typically provided by a hospice bereavement program may include the following: • • • •

Individual grief counseling Various types of bereavement support groups Educational interventions Social support programs 325

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Grief and Bereavement in Contemporary Society

• • • •

Specialized programs for bereaved children Expressive therapies (art, music, movement, and play) Grief camps Family bereavement programs

Individual Grief Counseling Individual counseling varies considerably in hospice programs. Such counseling can range from informal visits to listen to the bereaved person “tell the story” of the circumstances surrounding the death to formal weekly therapy directed to helping the bereaved person return to some previous level of higher functioning. Outcomes in bereavement counseling are thought to be better when individuals self-select to receive counseling than if they are recruited, as is the case in all mental health treatments. There remains a lack of evidence for the effectiveness of various forms of bereavement counseling (Forte, Hill, Pazder, & Feudtner, 2004); however, neither is there support for the suggestion that grief counseling may be harmful to individuals (Larson & Hoyt, 2007), an issue of importance to hospices delivering services to the bereaved.

Various Types of Bereavement Support Groups Hospice programs that have run general bereavement support groups have found that, when possible, it is useful to have different types of support groups for different bereaved populations. For instance, those who have experienced sudden traumatic deaths may find it difficult to relate to a spouse whose partner died of cancer over an extended period. Similarly, those who have experienced stigmatized deaths from HIV, suicide, or drug overdose may have difficulty sharing their experience with others who experienced a death that was more socially accepted. In general, where possible, having groups for individuals with similar losses will usually be more effective, such as for bereaved parents or siblings or children of different ages.

Educational Interventions A mainstay for hospices providing bereavement follow-up is to provide educational resources that help family members to gain a perspective on what to expect during the bereavement period. Mailing information at intervals during the year following the death often does this. The initial mailing usually focuses on common reactions and feelings and what is “normal” grief. Later mailings may address ways of coping with grief, including topics such as journaling, poetry, building self-esteem, and coping with holidays.

Social Support Programs Social support has been found to be an important component to successfully coping with bereavement (Holtslander, 2008; Schulz, Hebert, & Boerner, 2008). Many

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hospices, sometimes as an outgrowth of bereavement groups, sponsor or encourage bereaved persons to network together to go on outings, to have potluck dinners, to attend sporting events, to attend cultural events, or to travel together. It is not unusual for new relationships and sometimes marriages to result from these activities.

Specialized Programs for Bereaved Children Surviving parents are frequently concerned for the health of children who have lost a parent or sibling. (Candle, the children’s bereavement service at St. Christopher’s Hospice, is an exemplar program discussed later in this chapter.) Specialized programs for bereaved children include the use of expressive therapies for children to express grief both verbally and nonverbally through art projects, musical expression, dance and other forms of movement, and—especially for younger children— play therapy. Family therapy may be indicated in some circumstances as well as individual counseling. A well-researched intervention called the Family Bereavement Program (Sandler et al., 2003, 2010) is available to use for parentally bereaved children (see chapter 11). The Family Bereavement Program consists of 14 sessions (12 classes and 2 individual sessions) and aims to increase positive affect, positive coping, and positive parenting while decreasing active inhibition and negative events. Hospices also sponsor periodic camps for bereaved children that feature many positive experiences with other grieving children to counteract the perception that a bereaved child is alone and without support. In general hospice bereavement follow-up, clinical staff assigned to the case visit the family to say goodbye and to attend funeral or visitation. A staff member or specially trained volunteer is assigned to contact the family at some regular intervals in the year after the death. Additional contacts are through regular mailing of educational materials on aspects of grief. Hospice staff or volunteers are assigned to visit or call families at intervals determined by need. For those families without special needs, contact is often after 1, 3, 6, 9, and 12 months. For families having trouble coping with grief, contact may be more frequent or, if requested, may require referral to a competent mental health professional with expertise in grief and loss. Regular grief support groups are usually held, and all families are invited. These groups may include emotional support, educational components, or both, and some programs also include a social component (Connor, 2009). Bereavement follow-up services should be based on need. Families requesting services should be given priority for access to bereavement support. Similarly, families opting out of receipt of bereavement follow-up should be accommodated, though it is generally considered a good idea to check back with a family declining services following death a few months later to make sure they have not changed their minds. It is not unusual for such families to say, “Thank you for calling. This is harder than I realized, and I would appreciate someone to talk with.” The identification of families at risk for poor outcome in bereavement is challenging. Tools that have been developed lack predictive validity. The majority of bereaved families are resilient enough to not need much in the way of follow-up services. Experience has shown that about 39% of hospice families seek additional

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support services after death (Gamino & Ritter, 2009). A small percentage of these, perhaps 5–10%, develop significant problems related to the death and may be depressed or in rare cases suicidal. Hospices need to develop their capacity to identify those who are really doing poorly and bridge them to competent mental health treatment.

Prolonged Grief Disorder Several authors have proposed the inclusion of a new disorder in the DSM-V (Prigerson et al., 2009) that is currently referred to as prolonged grief disorder. This condition is thought to be distinct from clinical depression and to have unique features that are directly related to the loss (see chapter 12). Some of the proposed diagnostic criteria for prolonged grief disorder include the following: • A significant loss of a loved one through death that involves the experience of yearning (e.g., physical or emotional suffering as a result of the desired, but unfulfilled, reunion with the deceased). • At least five of the following nine symptoms experienced at least daily or to a disabling degree: • Feeling emotionally numb, stunned, or that life is meaningless; experiencing mistrust; bitterness over the loss; difficulty accepting the loss; identity confusion; avoidance of the reality of the loss; or difficulty moving on with life. • Symptoms must be present at sufficiently high levels at least 6 months from the death and be associated with functional impairment. There is continuing debate in the hospice and palliative care field on the wisdom of pathologizing grief by including it as a disorder (Breen & O’Connor, 2007). Although this would move grief from a normal human experience to an illness model, others argue that it may also help to facilitate the delivery of care to individuals who are experiencing significant emotional distress and functional impairment. A decision on the inclusion of prolonged grief disorder in the DSM-V is forthcoming, as is a recommended change to the criteria for major depressive disorder. AU: Pls. provide any updates. Currently one cannot be diagnosed with major depressive disorder if a recent death has been experienced. A proposal is under consideration to remove this disqualifier so that someone grieving could receive a diagnosis of major depressive disorder.

Community-Wide Bereavement Support and User Evaluation A significant proportion of U.S. hospice programs now offer bereavement support programs to the entire community, not just those who have received hospice services. According to the National Hospice and Palliative Care Organization (2010), 98.3% of hospices provide bereavement services to the community and 17.1% of bereaved clients were not users of hospice services.

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Many U.S. hospice programs evaluate the effectiveness of their one-year bereavement follow-up services by using the National Hospice and Palliative Care Organization’s Family Evaluation of Bereavement Services questionnaire. Overall, 76.7% of users rated How well services met the need of the bereaved client as very well.

Differences Between Hospice Bereavement Services in the United Kingdom and United States Historically bereavement services in the United States developed quite differently than in the United Kingdom. There was a lesser tendency in the United Kingdom to focus on psychological services, with more focus on support from communities and volunteers, whereas in the United States there was a belief that bereaved persons needed to grieve and often needed assistance in doing so. This idea has changed considerably in recent years with a new paradigm that grief work is not always necessary, that continuing bonds with the deceased are normal, and that the bereaved person should seek support when needed rather than be recruited to bereavement services (Klass, Silverman, & Nickman, 1996; see also chapters 4 and 25).

St. Christopher’s Hospice Bereavement Services St. Christopher’s Hospice has been providing care to an ethnically, culturally, and socially diverse population of about 1.5 million people in South East London since Dame Cicely Saunders founded it in 1967. Widely recognized as the first “modern” hospice, its early work inspired rapid developments across the world, changing the way dying people were cared for and extending that care to families and friends during the illness and into bereavement. In the United Kingdom, the challenges of an aging population and the economic recession have brought an increasing recognition that the aspiration to ensure good care to all dying people and the bereaved cannot be met by hospices alone, or simply by efforts to improve individual welfare. Cost-effective approaches are required that seek to integrate health and social care, recognizing that death, dying, and bereavement are primarily social experiences in which good symptom control and physical care remain very important. The expertise of hospices must be used to support the development of competent and confident generalists, and the relative richness of hospice resources made to work harder in outreach to local communities beyond their direct patient populations (Monroe, 2010). With their strong local community roots and significant and long-term volunteer contributions, hospices are well placed to support the development of “compassionate communities” where citizens are less afraid of loss and are empowered to offer one another sensitive and individually appropriate help. Early on, hospice philosophy emphasized the importance of working with the strengths and resources of individual families and community networks, rather than simply identifying problems and associated risks and generating a professionally defined prescription to “solve” them (Monroe, Hansford, Payne, & Sykes,

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2007). More recently, this approach has been extended by an interest in the concept of “resilience” and services designed to sustain and promote it (Bonanno, 2008; Monroe & Oliviere, 2007; Stroebe, 2009). Recent years have seen an important debate about the efficacy of bereavement interventions (and their costs) and the definition of those most likely to benefit from them. One of the difficulties with the debate in terms of children is that measures tend to focus on outcomes defined in terms of psychiatric symptoms and behavioral disorders (Currier, Holland, & Neimeyer, 2007), which may not capture the most relevant outcomes for children and families.

The Candle Project Candle, the children’s bereavement service at St. Christopher’s Hospice, will be used as an exemplar of a service based on a public health model using a quality-oflife rationale that seeks to prevent or mitigate the potential negative consequences of bereavement for children and young people and to promote stress-related growth (Penny, 2010; Stokes, Pennington, Monroe, Papadatou, & Relf, 1999). A multisystem approach has been adopted with a wide range of interventions focused on the individual child, the family, communities, agencies, and national policy development. Such an approach does more to maximize possible benefits than a sole focus on symptom reduction. The relationship with families is designed to be collaborative, and many services have been developed through listening carefully to their feedback. Such services need to fit with the culture and individual situation of each family if they are to prove acceptable, particularly to those hardest to reach. In common with all St. Christopher’s services, the project is free to children and families. By the early 1990s, St. Christopher’s had developed an expertise in working with bereaved children that was widely recognized by local professionals. As there was no other service to support bereaved children in the area, St. Christopher’s received regular requests to provide bereavement support for children unrelated to its patient population. In response, a needs assessment was conducted in 1995 with all local agencies involved with children. A steering group of local stakeholders and parents was formed, and in 1998 Candle was launched having attracted funding from a charitable trust and an appeal in the local community. The aim was to offer a service to any child bereaved through death in the South East London area. Candle now has a full-time equivalent clinical staff of three who support about 250 children and their families each year. Referrals are accepted from parents, carers, and professionals. Flexible and accessible short-term services delivered at the right time can underpin the strength of children and their families, supporting their coping by boosting confidence in their own skills. To avoid waiting lists, it was decided that the pattern for individual work would be a maximum of six sessions linked to an opportunity to return briefly to the service at a later date. Individual and family work is linked to a group work program and a telephone advice service.

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Individual and Family Support Research on whether bereaved children and young people as a group are at greater risk of negative life consequences is not easily summarized because a wide range of factors moderate and mediate the impact of bereavement. However, those who experience bereavement alongside other losses or preexisting disadvantages seem to be at increased risk of negative outcomes in areas such as education, emotional, and mental health and risk-taking behavior (RibbensMcCarthy, 2006). There is a sense in which all bereaved children and young people face disadvantages. This is particularly so for those bereaved by a sudden death and those living in areas of social deprivation. Of the families seen by the Candle Project, 80% live in areas identified as below the halfway mark in the government’s index of multiple deprivation, and two thirds of the children come from nonwhite British families, demonstrating the trust in which the project is held by local communities. Some families who attend Candle indicate that they would refuse a referral to a statutory agency such as a child and adolescent mental health service or a social care team, fearing that this would “label” their child. Last year, 65% of the children referred to the Candle Project had experienced the sudden and often violent death of someone close to them: 11% were bereaved through murder, 7% through suicide, 11% through road traffic accidents, and 23% through heart attack. Following an assessment meeting with the parent or carer of the child, up to six sessions of individual or family work are offered. These sessions are held at the hospice in order to maximize professional resources by avoiding travel time. Volunteer transport is provided as appropriate to make it easy for families whose lives may be seriously disrupted to attend meetings. Parents report the value of brief interventions because work and home demands are immediate and pressing, and commitment to counseling can rank low in terms of day-to-day priorities. The short-term approach also means that children miss few classes at school and parents do not have to ask for much time off work. The aim is to normalize the bereavement process and empower the parent with information and knowledge to help his or her child. A variety of therapeutic approaches are used in the intervention, which is an introduction to a way of approaching and managing a process that will continue for a long time (Way & Bremner, 2010). The final session includes a review with child and parent that reinforces learning and a sense of achievement. The message is one of confidence in their ability to carry on with their life, using the things they have done in the sessions to support them and with the offer of returning if they need to. This concept is known as the extended warranty and serves as an insurance policy for bereaved families who are facing a changed world with many new challenges. Interestingly, no family has ever complained about the limit on sessions. There seems to be solidarity in suffering, and the public are more realistic and aware of resource limitations than professionals and politicians give them credit for, fully understanding the argument about maximizing equity of service allocation. About 10% of families make contact again each year, with some maintaining sporadic contact over a number of years. When families come back, they are offered a maximum of two follow-up sessions to examine strategies for

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coping with the bereavement-related issue that has arisen, such as school transition or a parent finding a new partner. All children, young people, and families are also offered the opportunity to attend a group day. The ongoing groups and family workshops offer a mechanism for maintaining a low-key connection with the project. The Candle clinical team delivers all individual and family interventions at Candle but the group work program has always relied on additional support from trained volunteers. Most groups are held on weekend days, when children, families, and volunteers are more available. Twenty-four group events are offered per year, and the group work has developed to meet different needs (Way, Kraus, & the Candle Team, 2010): • Children’s Days for 3–7-year-olds. Parents attend with their children but also have an opportunity to talk separately to each other over lunch (three per year). • Children’s Days for 8–12-year-olds with a separate group for parents and carers (three per year). • Young People’s Evenings, for those aged over 13 and ongoing until they reach their 19th birthday. These are run three times a year, between 6:30 and 9:00 p.m. on a weekday evening because young people reported that they preferred not to meet on weekend days when they are busy with parttime jobs and other activities. The groups are open, and young people attend for as long as they like. Other groups have developed in response to user feedback: • Monthly bereavement support groups for parents and carers, facilitated by staff and volunteers. This group was initiated following requests from parents for a regular group for those in the early stages of bereavement • Self-help group for parents and carers. This meets three times a year, and volunteers provide child care. Two former service users lead the group. It is an open group that parents can attend for as long as they wish. • Sibling Carer Group is for bereaved young people bringing up their siblings following parental death. Child care is provided (three per year). • Family Workshop days explore issues around parenting for parents and children. This occurs twice a year. These days began in response to requests from parents and are adapted from the well-researched familybased interventions of Sandler et al. (2003, 2010). Numbers and a desire to avoid delays mean that children and families bereaved by murder or suicide are integrated into standard groups. Despite concerns about the effects on others of hearing family stories of murder and suicide, parents and children seem to take it in their stride. Some separate group events are delivered— for example, a group day for children and their carers from all over the United Kingdom who had experienced bereavements in the South East Asian tsunami.

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Outreach, Training, and Community Development

AU: Pls. cite here and, if needed, add to the references.

Candle provides a telephone advice service during working hours. It receives calls (often multiple) from about 500 individuals each year: professionals, parents, and carers. Most calls involve giving advice and information followed up by sending relevant literature, much of it produced by Candle. The service was externally audited in 2001 (Levy, 2004). Results of this audit indicated that most callers felt that the advice and resources supplied had increased the confidence with which they could provide support to bereaved children without the need of a formal referral to a bereavement service. Project staff have also edited a widely used textbook published by Oxford University Press, now in its second edition, and produced a range of journal articles including the underexplored area of work with under-5-year-olds (Way, 2006). In addition, efforts to maintain good links with the media, national and local, including newspapers and magazines focused on black and minority ethnic communities, are continuous. Training and raising awareness are integral to the Candle service. From the outset, it was clear that a small project could not deliver a direct service to every bereaved child in the catchment area. Therefore, about a third of project professional resources are dedicated to training, to disseminate the knowledge and experience gained to the many professionals and volunteers whose work brings them into contact with bereaved children on a daily basis, such as teachers, nursery staff, and health care professionals. If professionals and volunteers working in relevant agencies receive basic training, they will be able to support many children through bereavement. The project runs over 50 training events each year, ranging from one-day courses for professionals in education, health, and social care, to the first university-validated courses in the United Kingdom in Childhood Bereavement at undergraduate and postgraduate levels, which began in 2004. Students’ backgrounds have been varied: Some work in or have established child bereavement projects, and others work in schools, secure units, and the police force. Candle has also developed a training initiative with the Metropolitan Police Service, which began in 2000 with the first pilot training programs for family liaison officers. These police officers work closely with families who are bereaved where an investigation is necessary around deaths, including suicide, road traffic accidents, and homicides. Nearly 2,000 officers have been trained. All receive an information pack including Candle literature and an invitation to contact Candle for advice in the future. This relationship ensures early contact with particularly vulnerable children. The program has now been rolled out nationally. Candle also partners the British Army in training service volunteers to support bereavement-focused activity holidays for service families bereaved by the fighting in Afghanistan. The St. Christopher’s Schools Project began in 2006 as a partnership between the hospice and Candle. The project has been highlighted by the Department of Health as an example of good practice in public information and education and an information resource for other agencies, and supports the rollout of the program on a national basis (Hartley & Kraus, 2008). The project has so far worked with 9–10- and 15–16-year-olds from 30 local schools. The children are invited to the hospice to take part in joint artistic projects with hospice patients. At the end of

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the project, there is a celebration at the hospice where the children’s families are invited to attend with the children to see the jointly completed work. The South East London area we cover has significant problems with gang-related violence and crime, and we are keen to support these children and young people to learn more about the importance of life through talking to those with an awareness of the reality of death. The project also allows families who would otherwise have no reason for contact with the hospice to understand more about the issues surrounding terminal illness. Evaluation of the project indicates that children, families, and teachers all value the experience. Teachers also report increased confidence to approach the subject of loss, which is part of the national curriculum.

Consultancy Candle provides a training and consultancy service to the government department responsible for helping families bereaved through disasters and terrorist attacks. Candle staff members also provide clinical supervision for a number of volunteers from other agencies working with bereaved children and supervision or telephone support to professionals who encounter bereaved children, and agree to work with them as part of their daily contact role. The project hosts an informal support group for leaders of children’s bereavement projects across the South of England. It also plays a part in the government-level advocacy and policy development work of the national Childhood Bereavement Network (n.d.; www.childhoodbereavementnetwork.org.uk).

Demonstration of Need and Evaluation In 2010, we conducted a brief stakeholder survey of 50 agencies that had referred children to us in the last year. Thirty-six replies covered responses from schools, child and adolescent mental health teams, hospital teams, social services, GPs, health care agencies, and local bereavement services for adults. All (100%) replied that there was still a need for the Candle Project. No other service for children has been established in the area, and Candle remains the only open access service. Eighty percent had used the training, advice, and consultancy provided by Candle as well as made referrals for individual children. All service interventions include a feedback response sheet. As is often the case, these are overwhelmingly positive. There have been difficulties in finding an acceptable tool for more formal evaluation (Stokes, Wyer, & Crossley, 1997). Since April 2010, Candle has been trialing the use of two measures recommended by the Child and Adolescent Mental Health Services Outcome Research Consortium: The Experience of Service Questionnaire (Barber, Tischler, & Healy, 2006) and Goal Based Outcomes, which permits clients to set their own goals (see Child and Adolescent Mental Health Services, n.d., for more information). The results will be analyzed and reviewed after a year. It is hoped that Candle demonstrates that a small project with very limited resources can have a significant, cost-effective impact if focused on integration and capacity building. There is no simple recipe for support to bereaved children and their families. All should have the opportunity to access appropriate, culturally

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sensitive information and support. A few will need considerably more, and Candle’s close links with other agencies facilitate rapid specialist referral routes including the Child Trauma Stress Clinic at the Maudsley Hospital in London. We also cowork cases with the clinic, exposing our staff to new techniques such as the use of the Children and War Foundation’s Writing for Recovery, a short-term, structured approach to narrative work with young people (Yule et al., 2005).

Conclusion Hospices are in the forefront of development of community-based and -owned bereavement service delivery that serves as an important link in the primary public health care system. Common service elements were described, and some of the implications of recent research on practice were discussed. The clear definition of anticipated outcomes, and evidence about the extent to which they are achieved, remains a significant challenge for bereavement services, as does the need to provide interventions that are informed by research. The bereavement program at St. Christopher’s Hospice was profiled with a focus on Candle, the children’s bereavement program, which is an exemplar program for hospices seeking to expand or deepen the community bereavement services they provide.

Acknowledgments Barbara Monroe gratefully acknowledges the contributions of Frances Kraus and the Candle Team.

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