Lessons in helping others cope with death: What hospices learned from Sept. 11 terrorist attacks
July 1, 2002
Lessons in helping others cope with death: What hospices learned from Sept. 11 terrorist attacks
Apply their knowledge to your own bereavement programs
It has been 10 months since two planes toppled the World Trade Center towers and a third plane slammed into the Pentagon. In the hours that followed, hospices mobilized to offer bereavement services to the thousands of people who lost loved ones during a long morning of terror that claimed more than 2,000 lives.
While grief cast a pall over the entire nation, nowhere was it more palpable than in the two cities where the acts took place.
Without hesitation, hospices in those areas worked the phones offering counseling services to swamped emergency agencies trying to cope with the onslaught of assistance requests. Hospice workers immediately began treating families, friends, and co-workers of those killed. The approach made sense. After all, hospices help families cope with loss on a daily basis. While hospices have a wealth of experience in bereavement care, many learned that there are significant differences between treating grief following an expected death and treating grief resulting from a sudden, unexpected death. Those same differences were magnified by the immense scale of the devastation.
"It’s different," says Kathy McMahon, president and chief executive officer of the Hospice and Palliative Care Association of New York State in Albany. "You need a different set of skills to handle traumatic death than you would to deal with an expected death."
The New York hospice trade association acted as a clearinghouse for bereavement services in the first few days following Sept. 11 and has continued to work with local hospices that are still dealing with victims of the terrorist attacks. In recognition of the long road to recovery the victims face, the hospice association recently accepted a $50,000 grant from the United Hospital Fund to explore ways to improve bereavement care in cases of traumatic death.
In short, New York hospices hope to learn from their own experience. While few could have imagined the scale of the community’s grief, New York City-area hospice staff say there are lessons that can be applied to traumatic grief caused by less sensational circumstances, such as suicide and automobile accidents.
For hospices that do not offer bereavement services to families whose loved one died outside the hospice setting, New York’s and Washington, DC’s trial by fire is good place to find model programs to start community bereavement programs. The same can be said for hospices that want to improve their current community grief programs.
In addition, the response to the terrorist acts also provides a blueprint for hospice response to community crisis. According to White House officials, future terrorist attacks are likely, which should prompt hospices to form action plans in the event of further attacks. Actions plans are also important for other community crisis situations, such as school shootings and other events that lead to significant loss of life and communitywide shock.
Hospice Care Network
Hospice Care Network in Westbury, NY, was already operating a full-service bereavement program prior to Sept. 11. Its community grief program provided services to those grieving loved ones following fatal automobile accidents, murder, and suicide, among other causes. But none of that prepared them for what they faced immediately following the attacks — and what they’re still facing today.
"I thought we were versed in traumatic grief," says Mary Gravina, LSW, director of bereavement services and pediatric programs at Hospice and Palliative Care Association of New York State. "But we were in no way prepared. We found a grief of a magnitude we had never seen before. It was worlds apart from grief we had seen among hospice families, and even different from other traumatic death cases."
The most notable difference was the lack of closure and finality victims’ families faced, says Gravina. With many families unable to locate the body of their deceased, the bereaved were unable to close out the event and move into the bereavement process. The same can be said for the attention paid to victims’ families and the sense of duty that many family members showed by attending community events that honored those who were killed. The hectic pace and media spotlight stunted their grief until attention turned away from the victims months later and family members found themselves overwhelmed by their grief.
Yet, Gravina noted parallels between normal traumatic grief cases and the extreme situation brought on by a massive terrorist attack. "It was a tremendous learning experience," she adds.
The lessons learned by Hospice Care Network can be applied to both community crisis situations and individual cases of traumatic death. According to Gravina, the hospice learned about:
- the need to partner with community groups in anticipation of catastrophic community events;
- the need for ongoing training specific to traumatic death, such as post-traumatic stress syndrome;
- the importance of victims sharing their stories with one another in group sessions.
With so many people eager to help, emergency services on Sept. 11 were overwhelmed with volunteers. With expertise in bereavement, the Hospices of the National Capital Region in Fairfax, VA, the largest hospice organization in the Washington, DC, area, found it difficult to integrate its services with services being provided by emergency services agencies, says Robin McMahon, LCSW, BCD, senior advisor for grief and loss for the Hospices of the National Capital Region.
The experience taught leaders of the hospice to take a proactive approach — that is, to have systems, policies, and partnerships in place prior to any community catastrophe. Hospices of the National Capital Region has since designated an emergency responder whose job is to make the initial contact with the agency responsible for handling the crisis.
VNS Hospice Care
Like Hospice Care Network, VNS Hospice Care provides bereavement care to families outside the hospice setting. Shortly after Sept. 11, the hospice was asked to provide counseling services to firefighters who lost family and colleagues in the towers’ collapse. "We’ve got families decompensating’ out there," hospice workers were told by a firefighter’s union representative. In addition to the firefighters, a law firm near the twin towers that had employees who lost family members asked hospice counselors to provide bereavement services.
"We weren’t prepared," explains Jeanne Dennis, MSW, executive director of VNS Hospice. "Nothing compared to what we experienced. There were so many layers of grief. We were concerned for all our patients below 14th Street, we had staff that had family that worked in the World Trade Centers, and the community was calling upon us to help."
What they learned was that while there were plenty of counseling services available to families, the level of expertise was not equal across the board. "What we know is that there are many mental health counselors out there, but not everyone has been trained in post-traumatic intervention," Dennis says.
Apply themes in traumatic situations
While there is a need for training outside bereavement care for anticipated deaths, experts say there are themes that can be applied in traumatic death situations. Most hospice programs approach bereavement care by applying a set of goals that are laid out in a bereavement care plan. These goals may call for bereavement professionals to help grieving patients:
- to express all the feelings over the loss: anguish, longing, relief, anger, depression, numbness, despair, aching, guilt, confusion, and often unbearable pain;
- to let the nonnegotiable and excruciating reality sink in that the grieving patient will never again be in the physical presence of the deceased loved one;
- to review the relationship from the beginning and to see the positive and negative aspects of the person and the relationship;
- to identify and heal unresolved issues and regrets;
- to explore the changes in family and other relationships;
- to integrate all the changes into a new sense of oneself and to take on healthy new ways of being in the world without the person;
- to form a healthy new inner relationship with the person and to find new ways of relating to him or her.
In addition to these goals, Dennis says, trauma situations call for "grief debriefing" training. Hospice workers need to be trained in breaking the news of a family member’s death and how to handle the shock that ensues. Grief debriefing also includes taking care of practical matters that hospice workers don’t normally have to address following an anticipated death. "You’ve got to roll up your sleeves and do all the practical stuff like making sure they get home, that children are cared for, for example," she adds. "Be prepared to move into a chaotic situation."
Longer healing process
Off all the differences between the two types of grief, time is perhaps the most significant. Families being cared for under hospice while they prepare for the death of a loved one from a terminal illness have the opportunity to prepare, which helps to soften the blow brought on by the patient’s death. While everyone is different, the bereavement process can last one to two years. In traumatic situations, that time period could extend well beyond two years. Hospices must be sure they have the resources for sustained treatment programs.
"We don’t want to make people dependent on grief counseling, but you have to be prepared to treat traumatic grief patients for a long time," says McMahon.
In traditional hospice situations, those suffering from grief are exposed to the following over a one-year or two-year period:
• Group-oriented bereavement counseling. Isolation and guilt are among the emotions the bereaved endure. Group counseling provides the understanding and support from others that may be missing. In addition, the support of those who have gone or are going through the same process can help those grieving the loss of a loved one understand their own emotions and feel normal.
• Individual grief counseling. While group counseling is perhaps an efficient way to counsel more than one grieving person, many require individual counseling to deal with the emotions surrounding their grief.
• Community services. Nonprofit groups exist in many communities. Hospices should be aware of the available services that could benefit the survivor.
For the most part, the same services are provided to traumatic grief patients. However, hospices must be aware of the subtle and not-so-subtle differences that come into play. For example, group counseling should not integrate traumatic loss patients with those whose loved ones died during hospice care. Traumatic loss patients often have a more profound story to tell that may cause others in the group to trivialize their own loss.
For example, a man whose wife died in the World Trade Centers shared his story with others in the group. His story was followed by a woman whose husband died from cancer. She began her story with, "My husband only died of cancer."
McMahon offered the following tips:
- Work on coping strategies from the beginning of treatment.
- In cases of newsworthy events, protect patients from gratuitous coverage and teach them how to cope in those situations, including knowing when to turn the television off.
- Set up a private ritual on the anniversary of the death and the days leading up to the anniversary. Try to surround patients with people who support them and insulate them from other distractions.
- Be aware of other significant dates that can send patients into an emotional spiral.
In many ways, there isn’t a great difference in treating anticipated grief and traumatic grief. But where there are differences, experts agree, having the expertise can prove critical. "We anticipated that there would be more parallels," says Gravina. "The difference between the two is that losing someone to cancer or some other disease is like getting punched in the gut; losing someone under traumatic circumstances is like getting punched in the gut and not seeing it coming."
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