Consider extending bereavement care
Grief likely to last more than a year
After a patient dies, the focus of hospice work turns to family and friends who are left to grieve. For the next year, social workers and chaplains must help those who are left behind to pick up the pieces and move on.
For some, this yearlong episode of care is enough to get them back on solid ground. But for many, a year is not enough. Depending on a number of factors — including the length of illness, caregiver responsibilities, and the relationship of the deceased to the survivor — grief can last years. Often, grief never goes away.
Studies on how people grieve bear this out, as well. The body of work on grief points out clearly that healing following the death of a loved one is not a function of time, but is dictated by a host of factors that are unique from one individual to the next.
"I’m coming on the 10th anniversary of my children’s death, and it’s bringing back some old emotions," says Patricia Loder, executive director of Oak Brook, IL-based Compassionate Friends, an organization that supports parents whose children have died.
Bereavement care is an integral part of the hospice mission, but Medicare does not reimburse hospices for the countless hours of counseling. Because the care is provided for free and costs are not recouped, most hospices must put a time limit on this care. That is at odds with the one-year follow-up bereavement care that most hospices offer to families.
Two factors are important in recovering from grief: time and emotional support from others, writes Lewis R. Aiken in his book Dying, Death, and Bereavement. "Feelings of grief are a natural reaction to any loss, but the duration and intensity of these feelings vary with who or what is lost and when the loss occurs," he writes.
Once a survivor completes a one-year hospice bereavement program, those two important factors are suddenly absent, especially for those who do not have family or friends to turn to. The next year, survivors are left alone to face important dates, such as the death anniversary, wedding anniversary, birthdays, and other significant dates.
"For many, the second year is worse than the first year," says Loder. "That’s why I’m against any program that is based on time."
Hospices that currently offer one year of bereavement care should consider extending care beyond the traditional length of time, says Sherri Weisenfluh, LSW, MSW, associate vice president of counseling for Hospice of the Bluegrass in Lexington, KY. Rather than 12- or 13-month programs, Weisenfluh says hospices should manage grieving people using a continuum of care, such as individual counseling, group sessions, and community programs, with the most intense period of care coming in the first and second year. Follow-up visits, calls, and/or community program referrals should be used over the next few years.
The bottom line, says Loder, is that people should not be made to feel as if their emotions are illegitimate simply because they continue to grieve beyond what people think is an adequate amount of time to grieve.
Of course, there are grief symptoms that are to be expected. Early on, feelings of confusion, loneliness, embarrassment, or discomfort expressing grief, and even a desire to join the loved one in death are all normal expressions of grief.
"If a person is left alone after a year, still having these emotions, it’s easy for them to feel as if they are not grieving right," Loder says. "They need to know that it is okay and that they are allowed to feel the way that they do."
The challenge for hospices is to provide adequate bereavement care to everyone irrespective of time and to do it in a way that does not create an undue burden on a hospice’s financial and personnel resources.
Weisenfluh is sensitive to the limited resources of most hospices. Hospices that are large enough or wealthy enough should extend their bereavement programs to allow for routine visits for longer than a year. In addition, those same hospices also should allow social workers to have regular contact beyond two years.
For the first two years, those suffering from grief should be exposed to the following:
• Group-oriented bereavement counseling. Isolation and guilt are among the emotions the bereaved endure. Group counseling provides the understanding and support from others than 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 understand their own emotions and feel normal.
• Individual grief counseling. Group counseling can be an efficient way to counsel more than one grieving person, but many people need individual counseling to deal with the emotions surrounding their grief.
• Community services. Nonprofit groups like Compassionate Friends exist in many communities. Hospices should be aware of the available services that could benefit the survivor.
In addition, a hospice should make provisions for follow-up care in the future. Weisenfluh recommends that hospices create a follow-up schedule for each of the patients who go through its grief programs. Depending on the circumstances of each case, social workers can decide for how long the hospice should follow up.
Wedding anniversaries, death anniversaries, birthdays (both the survivor’s and the deceased), and the holidays are obvious dates that should prompt a phone call from the hospice to gauge emotional stability and whether a visit or referral is warranted.
How long this type of follow-up care should continue is survivor-dependent, Weisenfluh says. An elderly widow will likely need less extended follow-up than a 12-year-old girl whose father died. The young girl may have resolved her emotions as a pre-teen, but may face an entirely new set of emotions when she reaches other milestones, such as graduations and her wedding.
Spotting troubled cases
Still, there will be hospices that cannot afford to allocate so many resources for such a long time. Instead, their goal should be not only to treat current emotional symptoms, but also to assess the bereaved person’s potential for prolonged grief and provide the needed information to help them recognize when they need help and where to get that help.
Indications of complicated grief or the possibility that surviving friends or family members will experience chronic grief include:
• Guilt. The survivor feels guilty for a number of reasons, including for trying to move on or for having failed as a caregiver.
• Unrelenting anger and hostility. The survivor cannot engage in normal daily activities without feelings of anger.
• Increased drug and alcohol use. Drugs and alcohol become a means of numbing pain or escaping reality.
• An inability to carry out daily tasks or responsibilities months after the loss. For example, the survivor fails to keep up with housework or cannot complete required duties of his or her job.
• Thoughts of suicide. The survivor not only expresses a desire to die but describes how he or she would follow through.
• Unrelenting loneliness. Despite the support of family, friends, and counselors, the bereaved person feels isolated and alone.
For those who are having a more difficult time processing their grief, treatment might include not only grief counseling but also grief therapy to help facilitate a more timely resolution. The goal of grief therapy is somewhat different from the goal of grief counseling. The goal in grief counseling is to facilitate the tasks of mourning in the recently bereaved to facilitate the bereavement process and provide a successful termination.
In grief therapy, the goal is to identify and resolve the conflicts of separation that preclude the completion of mourning tasks in people whose grief is absent, delayed, excessive, or prolonged. Grief therapy is most appropriate in situations that fall into the following three categories:
• The complicated grief reaction is manifested as prolonged grief. People who have this difficulty know they are not coming to an adequate resolution of their grief, because the loss has occurred many months (sometimes years) earlier. The reason behind this type of complicated grief reaction often is a separation conflict leading to the incompletion of one of the tasks
of grieving. Much of the therapy involves trying to discover grief tasks that have yet to be completed and learning what prevented them from completion.
• The grief reaction manifests itself through some masked somatic or behavioral symptom. These bereaved persons are usually unaware that unresolved grief is the reason behind their symptoms. However, a peripheral diagnosis reveals unresolved grief over a much earlier loss as the culprit. People usually experience this kind of complicated grief reaction because, at the time of the loss, the grief was absent or its expression was inhibited. Consequently, their grieving was never completed, and this caused complications that surfaced later as somatic or behavioral symptoms.
• The reaction is manifested by an exaggerated grief response. A precise definition of exaggeration is difficult because of the wide variety of manifestations that normal grief can take, but persons falling into this category would be those with excessive depression, excessive anxiety, or some other feature usually associated with normal grief behavior manifested in an exaggerated way so that the person is dysfunctional and a psychiatric disorder diagnosis could apply.
In addition to preparing survivors for the years after the first year of grief, hospices also should educate surviving family members and friends about services available to the community, perhaps even referring them to programs before the year is up to ensure a smooth transition
"Hospices need to teach [bereaved people] to teach other people what they need," says Loder. "[Bereaved people] need to be taught that it’s okay to still be grieving years after they have lost someone they love."
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