Guide Offers a Blueprint for End-of-Life Conversation With Youth

Enlisting the advice of adolescents and young adults with serious illness, researchers at the National Institutes of Health have developed a guide to help young people and their families address issues surrounding end-of-life care. Voicing My CHOICES is the first guide designed to help adolescents and young adults express how they would like to be comforted, supported, and cared for in the course of serious illness, and how they would like to be remembered if they do not survive. The guide is aimed at helping families and health professionals open difficult conversations, and was written using language and questions tailored to the particular needs and preferences of young people. A paper in the November 2012 issue of the journal Pediatrics reported on a study in which young people with serious illnesses read and commented on pages from two existing advance care planning guides. The study found that adolescents and young adults do want to be involved in end-of-life planning. Almost all of the 52 participants in the study felt that having such a guide was helpful and important. Their comments on specific questions shaped the content of Voicing My CHOICES. Lori Wiener, Ph.D., director of the pediatric psychosocial support and research program at the National Cancer Institute, is lead author of the Pediatrics study and developed the prototype for Voicing My CHOICES that the young participants evaluated. She collaborated with Maryland Pao, M.D., clinical director of the National Institute of Mental Health, whose staff provides psychiatric consultation at NIH’s research hospital for patients of all ages with serious illness. Developing Voicing My CHOICES began with focus groups in which young people with serious illness endorsed the need for an advance care planning guide for persons their age. Out of this came a study, reported in 2008, in which a group of 20 adolescents and young adults living with cancer or perinatally acquired HIV disease were asked to read and evaluate the publication Five Wishes, an advanced directive for adults, along with additional topics identified during the focus groups. The study team used their feedback to create a new guide for young people called My Thoughts, My Wishes, My Voice. In the current study, youth reviewed pages from this publication and Five Wishes. Their comments were incorporated in the final Voicing My CHOICES. “Adolescents and young adults often stay silent, not sharing their fears—as they do not want to further upset their parents,” said Wiener. “And parents don’t bring up end-of-life issues for the same reasons.” The research studies showed, however, that teens and young adults are interested in these issues and value the opportunity to express their preferences. The guide also serves a developmental purpose. “At a stage of life where they would normally be seeking identity and a way to leave their mark on the world, they are in a situation where they can’t make decisions,” said Pao. Youth are concerned, she said, with how they will be cared for and remembered and, true to their age, about peer relationships. They want to be heard. Voicing My CHOICES includes questions about making medical care decisions and the types of life support a young person would or would not want. In response to comments, changes were made to make the language in Voices My CHOICES less technical, and to offer both yes/no and open-ended questions. Participants in the study endorsed a section in which they can indicate whether they would like to donate their body to science or have an autopsy, which speaks powerfully, said Wiener, to their sense of altruism and the need to find meaning in their experience Aging and Long Term Care CE Course “Adolescents and young adults can feel very frightened and alone when their bodies are no longer responding to medical interventions and decisions are being made around them,” said Wiener. “Allowing them to be involved in decisions, and to document how they wish to be remembered, enhances the trust in parent and medical provider relationships and provides them with the opportunity to give meaning to their life.” The product of a collaboration between clinical research teams representing two different areas of focus within NIH’s research hospital—pediatric oncology and psychiatry—Voicing My CHOICES can be used to help patients, families, caregivers, and health care providers. Voicing My CHOICES is available from Aging With Dignity (www.agingwithdignity.org), a nonprofit that provides the advanced directive document for adults, Five Wishes. References Wiener L, Zadeh S, Battles H, Baird K, Ballard E, Osherow J, Pao M. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics. 2012 Nov;130(5):897-905. doi: 10.1542/peds.2012-0663. Epub 2012 Oct 8. Wiener L, Ballard E, Brennan T, Battles H, Martinez P, Pao M. How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. Journal of Palliative Medicine. 2008 Dec;11(10):1309-13.

Coping with Grief During the Holidays

For many people who have experienced a loss, holidays can be a very difficult time. "If only I can get through the holidays" is often a continued refrain during this season. In the roller coaster of grief, holidays are, for many people, a low point.

According to the Hospice Foundation of America, there are many reasons why the holidays can be so difficult. Kenneth Doka says the holidays are full of memories. We often pause to reflect on all the holiday experiences we've had, both good and bad. We remember all the people who have been part of our lives.

Second, holidays are not only times for past memories, but for fantasies of the present and future, as well. As we shop, we may see things that would be perfect gifts for the person who has died. We envision how that person would be so delighted when the gift is opened.

Third, holidays are stressful. There are so many things to do and so much to accomplish. In a time when one is already experiencing low energy, this can be overwhelming.

Finally, we can feel out of sorts with the season. Everyone seems so happy and cheerful; it is easy to feel alone. Recognizing that the holidays can be painful often helps ease that sense of isolation. We can acknowledge that this is a normal reaction to grief.

There are strategies to make holidays easier. They won't take your grief away, but they may help.

1. Be kind to yourself. Only do as much as you can comfortably manage. Honor your own feeling and needs.

2. Express your feelings. According to Judy Tatelbaum, the surest road through grief is to feel it, not deny it. When you are hurting, the best advice is cry if you need to cry.

3. Ask for what you need. If you want privacy or companionship or a shoulder to cry on, say so. Other people don't know how you feel unless you tell them. Helping you can be satisfying for someone else.

4. Don't overwhelm or over commit yourself. Give yourself a reprieve. Take time for yourself and take care of yourself. Take it slow and easy.
MFT Continuing Education

Coping with the Holidays After the Death of a Loved One or when you Are a Victim/Crime Survivor

You Can Make It Through the Holidays
Many among us have struggled with the cloud of sadness that may surround the holidays when a friend or family has experienced a tragedy such as a sudden violent death or a serious physical or emotional injury. The onslaught of holiday cheer may seem too much to bear. Holidays may give rise to new or returning bouts of depression, panic attacks, and other forms of anxiety for those whose lives have been affected. Victims of crime, family members, friends, and work colleagues may re-experience life-changing traumas through flashbacks, nightmares, and overwhelming sadness. Some have trouble sleeping, while others don't want to get out of bed. Tears may come easily, often when least expected. Old ailments, including headaches, gastrointestinal problems, and other aches and pains may return.

Many victims and families, however, have found that holidays can be manageable if they take charge of the season, rather than letting it take charge of them.

Families who have made this difficult journey offer some suggestions to help those who may be just starting down this path.

Change Traditions

Trying to make this holiday seem like holidays of the past can intensify the difference. Gather the family together early and decide which traditions to keep and which to let go. Change holiday plans to accommodate the needs and wishes of those who are hurting the most. Pay particular attention to the physical needs of someone who has acquired a disability as a result of victimization.

Create a Special Tribute

Some families light a special candle and place it on a holiday table to honor the memory of a loved one who has died. Others keep a chair empty and place a flower or other memorial on the seat. Some write treasured remembrances and place them on a special plate or in a bowl for those who wish to read them. Families of a surviving victim may want to honor that person by openly expressing gratitude for his or her presence.

Consider Carefully Where to Spend the Holidays

Many people think going away will make the holidays easier. This may be helpful if you are traveling to a place where you will feel loved and nurtured. However, if travel is arranged as a means of trying to avoid the holiday atmosphere, remember that American holidays are celebrated throughout this country and in many parts of the world. It is impossible to escape holiday reminders.

Accept grieving friends and family members as they are; don't try to tell them how they should feel or state that you "understand" how they feel. Focus on giving unconditional support.

Balance Solitude With Sociability

Rest and solitude can help renew strength. Friends and family, however, can be a wonderful source of support. If you are invited to holiday outings, make an effort to go. Attend concerts or other cultural events that lift your spirits. You may surprise yourself by enjoying special outings, even if you feel like crying later.

Relive Fond Memories

Attempting to go through the holidays pretending that nothing has happened can be a heavy and unrealistic burden. Think about holiday seasons you have enjoyed in the past and identify memories you want to hold in your heart forever. No one can take those away from you. Celebrate them and be grateful. If feelings of sadness pop up at inappropriate times, such as at work or in a public gathering, try thinking about what you have, rather than what you have lost. Focus on the blessing of the memories in your heart.

Set Aside Some "Letting Go" Time

Schedule time to be alone and release sad and lonely, pent-up feelings. You may want to cry or write about your thoughts and feelings. If someone has died, you may choose to write a letter to say "goodbye," "I love you," or "I'm sorry." Even though it may feel strange, allow your loved one to write back to you through your pen. You may be surprised at what you write. By setting aside special times to allow painful feelings to surface, it becomes easier to postpone expressing them in public.

Counter the Conspiracy of Silence

Family members may consciously or unconsciously conspire to avoid mentioning the tragedy in your family. This is usually a well-intentioned but misguided attempt to protect your feelings. If this seems to be happening, take the initiative and talk to your family about the importance of talking openly about what has happened and sharing your feelings of loss or sadness. Encourage them to tell stories about your loved one and to look for opportunities to refer to him or her by name.
LPC Continuing Education
Notice the Positive

Some people conclude that facing the holidays is simply "awful." But deciding prematurely that "everything about life is awful" is too strong a generalization from a personal tragedy. Although you may have difficult times during the holidays, you also may experience joy. Accept the love and care of others. Reach out to someone else who is suffering. Give yourself permission to feel sad and to experience joy.

Consider shopping online as an alternative to the frenzy of mall shopping-but don't try to "buy" your way out of sad feelings.


Find a Creative Outlet

If you have difficulty talking about your feelings, look for a creative way to express yourself. Write a poem or story that you can share with others. Buy watercolors or oils and put your feelings on paper or canvas, even if only splashes of color. Contribute to a favorite charity or organization in your loved one's memory-either financially or by volunteering to help. Buy gifts for less fortunate children, a hospital, or a nursing home.

Remember the Children

Listen to them. Celebrate them. Cherish them.

Children may have deep feelings that can be overlooked if you spend all your time focusing on yourself. Putting up holiday decorations can be a draining emotional experience, but these symbols are very significant to children. A friend or relative likely will be happy to help decorate or purchase and wrap gifts.


Protect Your Health

Physical and emotional stress changes the chemical balance in your system and can make you ill. Eat healthy food and avoid over-indulging in sweets. Drink plenty of water, even if you don't feel thirsty. Avoid alcohol, which can be a depressant. Take a multivitamin. Get 7 to 8 hours of sleep each night. Talk with your doctor about an antidepressant or anti-anxiety medication if you think it will help. If you are unsure how a medication will affect you, talk to your doctor about your concerns.


The most valuable help usually comes from someone who shares a common experience or understands something about what you're going through.


Call Upon Available Resources

People of faith are encouraged to observe services and rituals offered by their church, synagogue, mosque, temple, or other faith community. Many "veterans of faith" offer serenity, a quiet presence, and healing wisdom. You may want to look for a support group of persons who have suffered similar experiences. The Mental Health America has affiliates around the Nation that keep lists of such local groups. If a group does not exist in your area, you can establish your own short-term group to focus on getting through the holidays. Spend as much time as possible with the people you love the most.

Most important, remember that you can't change the past, but you can take charge of the present and shape the future.