Hospice: A Resource in Community Tragedy

Marcia Lattanzi-Licht

     Hospice programs across the United States have been a source of support for millions of families facing personal tragedies. Hospice professionals and volunteers witness daily lessons about the fragility and impermanence of life. "We remember countless names, and faces, families and homes that remind us how life can be forever changed in an instant" (Scuillo, 2002).

     Tragedies affect us on several levels: personal, family, community, and public. There can be overlap, depending upon our relationship to the people who die in tragedies. Offering ongoing support to survivors of public tragedy is a natural extension of hospice's mission and community focus. Most hospices have made a strong commitment to the end-of-life and grief-related concerns of the larger communities they serve. As providers of continuing support for bereaved persons, hospices are well positioned to be an important part of the spectrum of services offered in the aftermath of public tragedy. 

     Hospice standards, bereavement care guidelines, and the reported practice patterns of hospices reflect their commitment to providing community-based bereavement services (NHO, 1995; 1996; NHPCO,2001a). 

     Many hospice programs in the United States have offered community support in time of a public tragedy. For example, Lower Cape Fear Hospice in Wilmington, North Carolina, was part of a community collaboration that involved educational efforts at the outset of the 1997 hurricane season following the previous year's devastating hurricanes (Cameron & Lattanzi-Licht, 1998). Programs in Missouri and Kansas worked together following major flooding of the Missouri River to ensure care of patients and families on either side of the river. Hospices in Florida (Slavin, 1998), Colorado and other states supported families evacuated by wildfires and also transported hospice patients and families to safe locations. When a 1983 Boulder Fire Department training accident left two young firefighters dead, hospice was called in to help. Hospice of Boulder County professionals provided psychoeducational sessions on grief and trauma to all members of the fire department along with short-term individual counseling and referrals. 

     Hospice programs in Kansas, Kentucky, Colorado, Oklahoma City, New York, New Jersey, Virginia, the District of Columbia, Pennsylvania, Massachusetts, Hawaii, and Missouri have worked in their communities in various ways to be part of the response to public tragedies. In rural communities such as Springfield, Colorado, where a series of sudden deaths deeply affected the small population, hospice played a central role in the ongoing support offered in the community. 

HOSPICE INVOLVEMENT IN COMMUNITY TRAGEDY

Most hospices and palliative care services are, like the rest of our country, unprepared for the impact and aftermath of a large-scale disaster or tragedy. The question of hospice's role in disaster and trauma reaches into some key areas. These concerns, which can represent real obstacles to hospice's involvement in community tragedy, are outlined below.

Resources: Capacity and Funding 

The cost and feasibility of offering trauma- and disaster-related services is a major consideration for hospices. The primary concern of a hospice must be the patients and families it serves. Hospice and palliative care programs also are concerned with the well- being of their staff and volunteers. Recent staffing recommendations are for one full-time hospice bereavement professional for every 200 to 300 deaths per year (NHPCO, 2001). Many hospice staff members serve dual roles, working with families facing the death of a loved one and also with bereaved families (Lattanzi-Licht, 1989).

     Providing bereavement services in the context of a public tragedy is an important hospice role, but it can also place significant strain on staff. Limited funding of bereavement services is an added challenge. Funding and staffing of community bereavement services should be addressed in the hospice's overall plan and budget. 

Clinical Staff Expertise

While it is true that hospice and palliative care staff are ideally suited to offer support in times of public tragedy, they can benefit from education about the experience and impact of trauma. Sudden deaths routinely touch hospices-the unexpected heart attack of the caregiving wife, the traumatic circumstances under which a patient's death occurs, or the sudden death of a hospice staff member. Nevertheless, key bereavement professionals should have specific training and certification in trauma/disaster services. At the local level, this training benefits not only the community, but also hospice and palliative care patients, families, and staff. 

     In November 2001, when flight 586 crashed in Belle Harbor, New York, Hospice Care Network's CEO, Maureen Hinkelman, went to the airport and organized staff participation in support of families. Nurses, social workers, and pastoral care and bereavement staff members made themselves available as needs arose in the emergency room. By setting priorities, the work of caring for the hospice's families continued. Non-urgent visits were rescheduled, allowing the hospice's patients and families to feel that they were contributing to the support of those affected by the disaster (Vogt, 2002).

     Hospice staff members often are willing to become involved in community disaster and trauma, and many hospice programs support these involvements. For example, when a trauma-trained staff member from a Pennsylvania hospice was called to the September 11 crash site in that state, the agency allowed time off, in addition to a week's leave after her return. She then offered an in-service for staff about her experiences with families at the site (Homan, 2001). 

Community Awareness of Hospice Resources

Coping with public tragedy requires the effective identification and utilization of community resources. Hospice's role in public tragedy relates to a number of variables: the nature of the community, its needs related to disaster/trauma across time, and the hospice's position and relationships within the community. In particular, the relationships are the vehicle for involvement in community tragedy. 

     When terrorists struck on September 11, 2001, the Hospices of the National Capital Region were creating their annual strategic media plan. Almost immediately they decided to provide free counseling to their entire community. After logistical arrangements were complete (staffing by professionals experienced in dealing with sudden loss, adequate coverage for hospice's patients, and a toll-free telephone number), the challenge was to deliver the message that hospice's services were available and free. The hospices' media outreach strategy included e-mailing the press, making clinical staff available for interviews, keeping the website updated, and creating a 30-second public service announcement (PSA). The PSA was produced within a month, thanks to the generosity of local donors and businesses. Custom versions were made available at no cost to state hospice associations in New York and California, and a generic version to Massachusetts (Levine, 2002). Collaboration and community involvement were keys to these successful efforts.

Timing and Hospice's Support

There is an instinctive desire to go to the scene of the tragedy and to offer support during the crisis response, but we cannot all be at the scene of the tragedy. Many community members speak to the excess of help early on and the scarcity of follow-up services. There is a critical need to plan for a coordinated continuum of services for those affected by the tragedy. The American Red Cross identifies four phases of a disaster (1995) and describes them in relation to clients and activities of disaster recovery: 

• Heroic phase (prior to and immediately after)
• Honeymoon phase (one week to 3 to 6 months after)
• Disillusionment phase (two months to 1 to 2 years after)
• Reconstruction phase (may last for several years after).

In the heroic phase, hospice's chief role is to support other responders and educate and work with representatives of the news media. In the honeymoon phase, hospices should help to inform others about their available services. Hospice's main activities fall during the disillusionment phase, when the reality of the impact and grieving are paramount. During the reconstruction phase there is typically a return to predisaster activities. Posttraumatic stress disorder will be apparent in some survivors at this point. 

     Hospices can make an important contribution during the reconstruction phase through referrals to competent private therapists in the community. The needs of people affected by tragedy in the heroic and reconstruction phases are typically met. Less effective support is available during the honeymoon and disillusionment phases. Hospice services have the greatest impact during these times. 

     Finally, hospices typically offer bereavement services to families for 13 months following the death of their loved one. Some hospice programs make their group or educational offerings available to families for a longer period of time, typically two to three years. Because of the complicated mourning involved in public tragedy, hospices offering bereavement services to surviving loved ones must consider extending the time frame for involvement with those services to two to three years following the tragedy.

Public Tragedy and Hospice Families

For regular hospice clients-the families preparing for or grieving the death of a loved one-public tragedies can have an unanticipated impact. There can be a magnification of grief and an intensified vulnerability for people facing the end of life and during bereavement. One woman whose husband died during the afternoon of September 11 described her response, "I felt like it didn't matter that Joe had died. His life seemed less important than the people who died in the terrorist attacks." Others can minimize their sorrow. A daughter who had cared for her mother with Alzheimer's for seven years said, "Compared to what other people have gone through with the tragedy, my grief seems small." It is important for hospice bereavement care providers to acknowledge the deep grief of surviving family members and help them cope with deficits in their support.

INDIVIDUAL HOSPICES AND TRAGEDY INVOLVEMENT

Hospice values of support during painful life experiences and community-based care form the foundation for involvement in community tragedy. The family-centered focus of hospice services, and the provision of bereavement care for at least 13 months following the death of a loved one, are unique dimensions that create both understanding and experience relevant to involvement in a community tragedy.

     It is wise for hospices to focus on activities and services that are realistic in terms of staff time and resources and to prioritize those activities based on community needs. Hospices seek to offer victims of tragedy services similar to those they provide in their ongoing programs (NHPCO, 2001b):

• Delivering grief and loss presentations to responders, community groups 
• Informing survivors of hospice's group offerings 
• Offering or collaborating in community memorial services 
• Extending individual counseling services to victims 
• Consulting and delivering presentations to schools 
• Making written materials, brochures available.

     There is a growing number of comprehensive hospice centers (Ryndes & Jennings, 2002) in the United States. These centers offer traditional hospice care, palliative care, palliative care consultation services, life transition services, and education, research, and policy programs. For example, the Compassionate Care Counseling Center in Las Vegas, Nevada, offers counselor intervention after the suicide or traumatic death of a coworker, the diagnosis or death of a coworker from a serious illness, downsizing/ or layoffs, intervention for business employees following a robbery, and intervention and support following a local or national disaster (Gardia, 2002). Counselors are master's level prepared and licensed, have attended Red Cross training programs, and have a minimum of two years experience. Local Employee Assistance Programs most frequently request services, but local business often contact the center directly. 

     Defining the nature, timing, and level of involvement in public tragedy is a crucial task for hospice programs. In a chapter titled "Shattered Dreams: A Community Responds to a Tragic Accident" in The Hospice Choice (1998), I describe a community-based collaboration and plan for responding to tragedy. Hospices not only serve the long-term needs of families through their bereavement programs, they are also resources for professionals and providers. In considering the services they can provide related to public tragedy, hospice programs should address these questions:

1. How can hospice define collaborative roles in a tragedy response plan?
2. What kind of services will be offered at the time of the tragedy/disaster and in the aftermath? 
3. Who will deliver tragedy/disaster services, both initially and across time?
4. How will the services be evaluated?

     Hospices also need to examine the services they provide to survivors of public tragedy. Hospice's approach to bereavement, like hospice care, involves a wellness and prevention approach. Except for hospices with a full range mental health services, grief therapy is appropriately referred to professional providers in the community. Key staff should keep current on new theoretical and research findings in traumatology. Hospices should also gather outcome information on services they provide to survivors of trauma. 

     While support groups may have a beneficial effect for some people, they are not for everyone. In fact, work by Herman (1992) suggests the limitations of the efficacy of group treatment. Her follow-up study showed that combat veterans who attended support groups generally felt better about themselves and more connected to others, but they also reported little change in intrusive symptoms. 

     Hospices should carefully consider the type of psychoeducational or support groups they offer and the populations included in those groups. A number of hospices across the country offer groups for family members whose loved one was murdered. In communities affected by public tragedy with large numbers of surviving family members, hospices should offer or cosponsor groups specifically for that population. Many community self-help groups for bereaved parents, like Compassionate Friends, successfully support parents who experience the death of a child in a wide variety of circumstances, including violent, traumatic deaths, suicides, and murders. 

     As recognized community experts in grief, hospice and palliative care providers have much to offer to those responding to traumatic deaths. An important area of trauma involvement for hospice and palliative care programs is educating crisis responders and other affected members of the community about the grief process. A number of hospice and palliative care programs have formal training relationships with law enforcement and victim assistance agencies, schools, local media, and others involved in community crisis responses. By the same token, hospice staff members benefit greatly from knowledge and training related to trauma (Lattanzi-Licht, 1999, 2002). 

HOSPICE ACTIVITIES RELATED TO 9/11

In the aftermath of 9/11, individual hospices and state hospice organizations participated in a wide range of activities (NJHPCO, HPCANYS, 2001). Services focused on all hospice stakeholders, including patients with life-limiting illnesses and their families, bereaved persons, hospice staff and volunteers, and, finally, members of the larger community. Outreach efforts extended to schools, workplaces, law enforcement, clergy, the news media, and government agencies.

     Some activities focused on the immediate event. Hospice nurses and physicians treated the injured, and staff volunteered at disaster relief sites, counseling families and registering the names of missing family members. Hospice inpatient units admitted acutely ill patients to free up other acute care beds for disaster victims. Professional staff members attended statewide crisis intervention training, and training sessions on posttraumatic stress and psychiatric symptoms of postdisaster. The Hospice and Palliative Care Association of New York State (HPCANYS) set up a toll-free number so help could be accessed by those in need. Hospice contact information was listed on the state's hotline and with crisis intervention programs (2001).

     Hospices also paid special attention to the needs of their families. They reinforced outreach efforts, especially to families with children. Several hospices moved up their scheduled children's bereavement group offerings or created additional groups. Most importantly, staff reassured current hospice families that they have a right to grieve, even though their own tragedy might seem less significant than the tragedies of 9/11. 

     It was important for hospices to pay attention to the needs of their staff and volunteers in the aftermath of 9/11. Hospices offered counseling to employees and organized prayer services. For staff who had lost a family member, money was collected to help support the families. Hospice staff also tried to support to each other; many had friends who were killed or were injured at Ground Zero.

     In communities deeply affected by the tragedy, hospice programs participated in a broad range of supportive activities, rituals, and educational events. Hospices coordinated local and countywide memorial services. Staff delivered educational presentations and provided consultations to schools. They also presented several public forums titled, Coping with Disaster: What to Tell Your Children. Hospice professionals facilitated support groups for those coping with the tragedy, and they set up sessions at faith communities about dealing with loss during the holidays. Hospices prepared and distributed information packets about grief. They sent letters to churches, businesses, schools, police departments, fire departments, and funeral homes, offering bereavement programs for families. Several hospice programs established and publicized a special hotline for grief counseling. Others offered walk-in counseling and psychiatric referrals. 

     Hospice's support extended to other caregivers in the affected communities. Staff and volunteers at a New Jersey hospice wrote to 100 long-term care providers and offered the services of their bereavement staff. Several long-term care facilities asked for on-site memorial services, and two facilities asked for counselors to be available to their staff and patients on a drop-in basis. Hospice chaplains supported and counseled ministers who had to deal with multiple funerals, serving as their on-call chaplains.

     Hospices also offered information and resources to workplaces. They helped educate employers about the grief process and how it affects workflow and productivity. Hospices also sent flyers about bereavement counseling to employers, asking them to urge workers to contact hospice as needed. In addition, hospices sent literature about grief and bereavement in the workplace to state crisis centers.

     In New York, New Jersey, Virginia, Maryland, Massachusetts, and the District of Columbia, state and national hospice organizations worked with the news media. They helped reporters develop stories about grief and bereavement. They created television spots on helping traumatized children and on hospice's role in community trauma. One hospice was featured on the cover of the local daily's television section in connection with a program to answer common questions about grief.

NATIONAL EFFORTS AND COORDINATION

National efforts require focus, creativity, and planning. In the aftermath of 9/11, the National Hospice and Palliative Care Organization (NHPCO) compiled for its member hospices a comprehensive list of materials related to disaster and trauma. In addition, NHPCO sought advice from national experts on future activities. After the Columbine shootings, Hospice Foundation of America (HFA) donated 100 copies of Living with Grief after Sudden Loss (Doka, 1996) to the Colorado Hospice Organization, which then distributed the books to local clergy.

     Both NHPCO and HFA made resources available on their web sites and in their publications. In addition, both are planning follow-up activities to address bereavement needs in communities coping with public tragedy. Organizations such as HFA and NHPCO should demonstrate continued leadership in defining standards related to hospice's role in public tragedy. Specifically, there are several suggested areas of focus:

• Establishing formal collaborative relationships with national organizations and groups who provide disaster services
• Creating educational opportunities on trauma and disaster for hospice staff and opportunities for certified trauma training programs for key hospice bereavement care providers
• Developing models and standards for comprehensive hospice disaster plans, with an emphasis on community collaborations
• Advancing the discussion of hospice and palliative care programs' role in public tragedy, together with ethical discussion of a broad range of possible scenarios, including bio-terrorism
• Encourage U.S. hospice involvement in global tragedies like the AIDS pandemic in Sub-Saharan Africa, where more than 6,000 people die each day. Numerous hospice programs in the United States have sponsoring and supportive relationships with partner hospices in Sub-Saharan Africa.

CONCLUSION

Supporting people is a counterbalance at a time of tragedy. Effective support reminds us that "we are all on the same bus" as citizens of our communities. It also reflects the reality that there is goodness and caring in the world, as well as violence and grief. Supporting people in the aftermath of tragedies helps restore a measure of faith in each other. Support prompts us all to remember that we may not have control over violence in the world, but we can respond with integrity and compassion to heartbreaking situations.

     It is time for hospice and palliative care programs to extend themselves in their communities and form strong relationships with other service providers and media representatives. The role for hospice programs in community tragedy needs to be defined, formalized, and integrated into the framework of community responses across time. We can learn together better ways to offer education and support. There is a seat for us at the table as creative partners surrounding the human responses to public tragedy. 

Marcia Lattanzi-Licht, MA, RN, LPC, is an educator, psychotherapist, and author. An early voice for hospice care, Mrs. Lattanzi-Licht was cofounder of Hospice of Boulder County, Colorado, where her work in education and bereavement is widely recognized. She is the principal author of The Hospice Choice (Simon & Schuster, 1998). For her work with crime victims, Mrs. Lattanzi-Licht was awarded the Boulder County District Attorney's Office Distinguished Service Award (1988). She is a winner of the NHPCO's Heart of Hospice (1995) and the Association for Death Education and Counseling's 2002 Educator Award. Mrs. Lattanzi-Licht is a consultant to several corporations and nonprofit organizations, including the NHPCO.

References

American National Red Cross. (1995). Disaster Mental Health Services I, Instructor Manual, Publication 3077-1.

Cameron, E., & Lattanzi Licht, M. (1998, November). "Hospice and community collaboration in the aftermath of disaster." Presentation at the National Hospice Organization Annual Meeting, Dallas, TX.

Doka, K.J., Ed. (1996). Living with grief after sudden loss. Washington, DC: Hospice Foundation of America.

Gardia, G. (September, 2002). Personal communication with the author.
Herman, J.L. (1992). Trauma and recovery. New York: Basic Books.

Homan, P. (October, 2001). Personal communication with the author.

Hospice and Palliative Care Association of New York State. (2001). Healing communities in times of trauma. Albany: NY: HPCANYS. (Ed Note: booklet)

Lattanzi-Licht, M., Miller, G.W., & Mahoney, J.J. (1998). The hospice choice. New York: Simon & Schuster/Fireside.

Lattanzi-Licht, M. (1999). Responding to a community tragedy. The Forum, 25, No 5.

Lattanzi-Licht, M. (2002). Hospice's evolving role in community-based bereavement services. Insights, 1. 8-11. 

Lattanzi-Licht, M.E. (1989). Bereavement services: Practice and problems. In M.E. Lattanzi-Licht, J.M.Kirshling, & S. Fleming (Eds.), Bereavement care: A new look at hospice and community based services (pp. 1-28). New York: Haworth. 

Levine, S. (2002). Lessons in Media Outreach from September 11th: A Story in Two Parts. NHPCO, Insights, 1, 22-23.

National Hospice and Palliative Care Organization (NHPCO). (2001a, October). Fax-back survey for bereavement professionals: Hospice's role in trauma and disaster. Alexandria, VA: NHPCO.

NHPCO. (2001b). Guidelines for Bereavement Care in Hospice. Alexandria, VA: NHPCO.

National Hospice Organization (1996). Community Bereavement Summary Results, N Reimer Penner, NHO Section Notes, Vol 4, 1. 

National Hospice Organization. (1995). Hospice Trauma Response Survey. National Hospice Organization Newsline, Arlington, VA. 

New Jersey Hospice and Palliative Care Organization (2001, October). We're there when it matters most. Scotch Plains, NJ: NJHPCO.

Ryndes, T., & Jennings, B. (2002, April). Increasing access to hospice and palliative care. Presentation at End of life care: A timeless model conference, sponsored by Duke Institute on Care at the End of Life and the NHPCO, Washington, DC.

Scuillo, R. (2002). September 11 Memorial Address, NHPCO Management and Leadership Conference, Washington, DC.

Slavin, P. (1998). Accountable to the community. Hospice, 9. 15-18. 

Vogt, K. (2002). A New York Agency's Experience with Disaster. NHPCO, Insights, 1, 21-22.