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A little more than a year ago, Marilyn Hansmann’s then-16-year-old daughter was a typical teen-ager surrounded by the trappings of adolescence — school, friends, boys, and nurturing parents. Months later, she and her rural Minnesota family learned her 74-year-old father had pancreatic cancer, which had spread to his bladder and one remaining kidney.
The prognosis was grim. Unwilling to undergo chemotherapy treatment, radiation, or surgery, Hansmann’s husband chose hospice. He was given just a few weeks to live but still remains in hospice care more than a year after his terminal diagnosis.
In the past year, the family has endured episodes where Marilyn’s husband was near death, punctuated by periods of recovery, only to be followed by yet another decline.
Now 17, Hansmann’s daughter struggles to cope with her father’s terminal illness. The once outgoing teen-ager has grown distant, her grades have dropped precipitously, she frequently engages in verbal and emotional warfare with her mother, and she refuses to talk about her father’s illness. There even have been threats of suicide.
"Dad’s dying doesn’t affect me," she told Marilyn and would-be counselors.
"It was as if something switched off in my daughter," Hansmann, 51, recalls. "She became distant. Or one minute she would be arguing with me, the next minute she would hang on me like she did when she was a little girl."
While there is no good time to lose a loved one, losing someone close to you during adolescence is perhaps the most difficult time in one’s life to experience grief. Adolescence represents a crossroads where childhood and adulthood intersect. It is a distinctly different stage of life than preadolescence and adulthood. Teen-agers use this period to determine a direction in life, strive for independence, and build intimate relationships that provide them with a sense of belonging.
But it hasn’t been until recently that grief experts have acknowledged how the dynamics of adolescence translates into a grief and bereavement process that is unique to those of younger children and adults. For years, grieving adolescents were counseled using a broad brush that placed them in the same category as children and older adolescents, and they were often treated like adults.
The story of Hansmann’s 17-year-old daughter underscores what is at stake and the importance for hospices to ensure their programs do not let the needs of teen-agers fall between the cracks. In some cases, hospices pinched by disappearing profit margins find children’s bereavement programs expendable.
"Because it is so difficult to get teen-agers to attend bereavement programs, it’s tempting to cut out children’s bereavement programs," says Mary Kelly Perschy, MS, the author of Helping Teens Work Through Grief, and a bereavement consultant based in Laurel, MD.
According to the Hospice Foundation of America, based in Washington, DC, there is too much at stake for hospice to write off programs aimed at teen-agers. Because teen-agers are in a pivotal developmental stage, the introduction of a crisis, such as the death of a parent or sibling, threatens to stunt critical development tasks.
In short, teen-agers who have not properly dealt with their grief will manifest the effects during adulthood.
One of differences between children and adolescents is that adolescents have an abstract understanding of death, but unlike adults, they have not fully developed the coping skills needed to process the death of a loved one. This can result in the following:
• Shock, disbelief, and denial: Although a teen-ager can intellectually understand, the death of a parent — for example — can seem unreal. In order to function, a teen-ager may try to carry on normally as if nothing has happened. Teen-agers, in particular, may show little signs of grieving in the beginning.
• Guilt: Most people who grieve experience some level of guilt. Guilt takes on a new wrinkle with teens because arguing with parents and rebellion are part of their development process, says Jean McCaw, MA, ATR-BC, child and adolescent grief coordinator for Point of Hope Grief Counseling in Falls Church, VA.
• Anger: Death can bring about feelings of abandonment, followed by feelings of anger. This can manifest itself in a bereaved teen-ager "acting out," says Perschy. The anger can translate into nonproductive and destructive behavior such as fighting, drug use, and sexual activity.
• Unusual happenings: It is not at all uncommon for a bereaved teen-ager to hear the voice of the deceased or feel as though they see that person passing by or in a crowd. These occurrences can be frightening unless there is someone around to let them know that this is a natural part of the grieving process.
• Thoughts of suicide: It is not uncommon for a teen-ager to have thoughts of suicide as a way of escaping pain or joining their loved one. It is important that these thoughts can be shared in a safe environment without the fear of judgment or panic from the person who is listening. Wanting to escape the pain is a normal response.
• Sexual activity: The need to be close to someone, both physically and emotionally, can be very strong at this time, and sexual activity also can serve as a distraction from pain.
• Drugs/alcohol: It is a natural response to want the pain to go away; unfortunately, some teens turn to drugs and alcohol to numb their pain. Bereaved teens are at high risk for involving themselves in self-destructive behavior. While these drugs may temporarily numb the pain, they very clearly prolong and complicate the grieving process.
"Kids who fare well are those who deal with their experience," says McCaw. "They have to talk about. If they don’t deal with it as teen-agers, grief will resurface and become more complicated as adults."
One of the greatest challenges is getting bereaved teens to participate in counseling. But if hospices structure their bereavement programs to reflect the unique nature of adolescent grief, the chances of reaching reluctant teens are increased. So, what should bereavement programs include if they are to meet the needs of not only children and adults, but of adolescents, as well? McCaw believes art therapy is a key component to drawing teens out where they can communicate openly about their feelings. "It’s less threatening, and a lot can be told through artwork."
Aside from art therapy, there are some basic approaches to adolescents, according to McCaw:
• Meet them where they are. This is a lesson that is true for all ages. For teen-agers, hospice counselors need to be aware to the developmental dynamics at play and respect their wishes to talk or not talk.
• Encourage them to grieve in their own way. As part of the need for independence, they should be allowed to express grief individually, rather than they way others would expect them to. Hospice counselors also need to encourage parents to affirm their children’s right to grieve differently.
• Normalize their feelings. In a time when they are trying to fit in or gain a sense of belonging, feelings of grief separate them from their peers. Programs should reinforce that what they are feeling is a normal response to a crisis situation.
• Acknowledge their right not to talk. For counseling to be effective, the grieving teen needs to be a willing participant. If the teen-ager is unwilling to talk, he or she should be given permission not to have to talk, but ask the teen-ager why he or she doesn’t want to talk or start a dialogue by discussing reasons for avoidance.
• Use group counseling. Group counseling allows grief-stricken teen-agers to see that they are not the only ones going through the same situation and that the feelings and emotions they are experiencing are normal.
Group counseling can help teen-agers:
— legitimize their feelings. Rather than feeling as if they are "going crazy," group discussion will show that they are normal feelings;
— see that they are not the only ones with those types of feelings;
— realize that someone else cares what they are going through;
— realize that their feelings do matter;
— see that there are ways to express their feelings in ways that can help them cope.
Experts point out that group counseling can be hard to implement because it is difficult for teen-agers to attend. Hospices should engage patients and their families in discussion and education about bereavement options, including adolescent group counseling to promote the program before the time comes to persuade teen-agers to participate.
• Use family-based programs. Often, the ability of a teen-ager to cope with the death of a loved one partly is dependent on parents or the surviving parent. Not only does the parent need to manage their own grief, but also they need to understand the behavior of their children. The hospice counselor needs to become a liaison between the parent and teen-ager and teach both sides how to communicate.
The hallmark of a good bereavement program is its ability to marshal community resources to help those in need. The same holds true for adolescent-specific programs. One community resource in particular should be considered mandatory for adolescent programs: schools.
Networking with school counselors allows hospices to build a relationship with local schools. The trust built over time allows both hospice and school officials to confidently rely on each other when a student is in crisis. Hospice counselors should encourage teens they are counseling to talk with their school counselor. "If they are having a particularly bad day, it’s good to have someone there they can talk to," says McCaw.
Partnering with schools can also provide an opportunity to provide "death education" to students. By having an open dialogue with students about death, it can prepare them for coping with future loss.
Other community organizations, such as churches, synagogues, and youth groups can also be valuable resources.
In fact, the 17-year-old Hansmann finally agreed to meet with an outside counseling service. While Marilyn wants to know what her daughter and counselor have discussed, she recognizes her daughter’s right to privacy. "I figure if she wants to talk to me about it, she can," the mother says. "I can see the old’ her coming out. She isn’t as angry as she was."