Dignity

It’s not surprising that we have trouble finding the best way to talk and think about death when we face it in our own lives. Few of us have gone through it or seen others go through it. Some general concepts can help people and families find the approach that suits them the best.

It’s important to remember that there’s no one right or wrong way to talk and think about death. Each family has its own culture and its own ways of doing things such as communicating, celebrating, arguing and grieving. As parents, you’ve learned what works best for your family and each of your children. Those instincts and experience are your best guide.

For example, you’ll need to decide whether you gather everyone, and talk all together, or whether you talk to each child separately. One child may need hours of gentle talk, with increasingly clear discussion. Another may be more comfortable with the subject than you are. Some families have learned that having everyone in the same room for anything isn’t a good idea. This is not the time to challenge that experience.

In any approach, let your children know that it’s good to talk about dying. Any point is a good one and anything is fair game. Let them know that you won’t be upset by their talk. Avoiding the truth with optimistic but plainly false statements usually shuts down conversation, as it tells your children that the subject is something you don’t want to talk about. Honesty is the best approach. Of course, there are different ways of being honest, with various degrees of gentleness and bluntness. If your children understand what you’re saying and are coping with it, then you can be less soft and clearer in your language.

At times, the person who is dying doesn’t want to burden the family, and so won’t talk about death. Similarly, a family member may avoid discussion for fear of taking away hope or causing depression. Each may believe that if the other wanted to talk then he or she would bring up the subject. It’s usually a huge relief when someone breaks the silence and conversation flows.

You may need to talk about specific treatment options or the lack of options. If your husband has decided not to pursue a potential treatment, your children may feel that their father is rejecting the pursuit of every possible moment on this earth. This sometimes feels like a personal rejection. Consider emphasizing that accepting death is not rejecting life, and is not rejecting them.

Even adult children need to feel important and special to their father. He may want to tell each how proud he is of him or her, and how that pride helps him in this very sad time. This is a gift he can give to each child. If he’s well enough, he may consider writing a journal for each one. Every time he thinks of something to say to each one, he can write it down. This can range from a single sentence about something in the past, or words of advice for the future. Such a journal gives children a sense of legacy, and a special reminder of their dad.

Often decisions need to be made about issues such as the approach to medical treatments, or whether their father wants care at home, in a hospital or hospice. These are sad and difficult topics, but it’s important to let your children know what their father wants, and it eases the responsibility they may feel for these difficult choices. The decisions can be formalized in a health care directive. The health care team can be part of developing a directive, as they have information on the various health care options.

A directive can also allow your husband to communicate his thoughts about dignity. Dignity is a very personal concept and means something different to everyone. It helps if your husband can describe what might threaten his dignity and what might preserve it. This lets the family and the health care team understand the best way to meet his needs.

It can be difficult to find meaning or purpose in someone’s dying. Yet, this time offers a very important opportunity to your children. It helps them learn about death and dying. This may be the last lesson a parent can pass on to children. It will be important for them, and teach them how to help their own children in the future.

Your presence and support is the greatest gift you can give your wife. This time can offer you both a chance to talk about things that matter to you.

You may want to talk about memorable moments in your lives, share stories about people, or review important events. Let your wife know the positive effect she’s had on you. Encourage family and friends to send letters or cards to her.

Your wife may want to have more serious discussions. Many people value this chance to share feelings and ideas they never thought they’d be able to discuss. Some people want to leave special letters or mementos for others, and your wife may need help with this. Some people find it helpful to record stories in some form.

If your wife wants to plan her funeral or memorial service, you can help her with this. She may want to choose the location for the service, the music, any speakers and what she wants to have happen.

There may be other ways that you and others can show your wife she won’t be forgotten. You may want to consider these ideas, or encourage others to do so:

• Make a photo album dedicated to pictures of your wife;
• Put together a memory box of objects important to her;
• Start a scrapbook dedicated to memories of her;
• Write down your memories of your wife. Ask others to add their own memories;
• Ask people to help plant a tree or place a bench in your wife’s favorite park;
• Ask people to give to an organization or project such as a scholarship, in your wife’s name.

Sometimes your support may be just being with her in silence. It’s okay to ask her what you can do to make this time the best that it can be.

Suggested Reading

What Dying People Want: Practical Wisdom For The End of Life
by David Kuhl, M.D.

No matter what your patient has done in her life, she can create a legacy. She can gain a place in the hearts and memories of people if she weaves love, gratitude and forgiveness into the last chapter of her life story. This is the simple, yet profound, wisdom that comes from Dr. Ira Byock’s identification of the four statements that matter most in life: “I love you.” “Thank you.” “Forgive me.” “I forgive you.”[1]
So, encourage your patient to reflect on and respond to questions like the following:

• “Who are the people who matter most to you?” “How can you let them know what they mean to you and how you feel about them?”
  
• “Who are the people who have helped you become the person that you are?” “How would you like to thank them?”
  
• “What unresolved hurts or conflicts are you carrying?” “Are you ready to let them go and to forgive those involved?” “How could you do this?”
  
• “Are you aware of people who feel you have hurt or wronged them?” “Are you ready to ask for forgiveness so that you can restore your relationship?”
  

You might also suggest that she identify the people who mean the most to her and to select a personal memento (preferably from possessions that have been important to her) that symbolizes what she appreciates about the person. The memento could be as simple as a photograph or as significant as a treasured piece of artwork or jewellery. If possible, she could arrange times to meet with the recipients to present her gifts and to tell them what they have meant to her and what her wishes are for them. Preparing a note to go with each gift could help her make sure that she expresses what is important to her about the relationship. Such a gift may well become a lasting treasure and precious memory for each person. If she does not have the strength or energy to prepare these gifts and notes, perhaps a friend, family member or hospice volunteer could assist.

Finding opportunities to review and share her life story might also be helpful in establishing her legacy. (See Sharing My Story for ideas on how she might do this). Having another person listen to her story will highlight its significant moments and relationships, and affirm the meaning of her life. By sharing her story, she may realize that in the living of her life she has already created a legacy.

Dignity therapy is a more formal approach that guides patients through a reflective process. During one-to-two-hour sessions, patients are encouraged to focus on aspects of their lives that have mattered most, and to consider what they wish to say to those they are leaving behind.[2] The sessions are audio-recorded, transcribed and edited. The result is a written legacy that can be given to loved ones in accordance with a patient’s wishes. Studies evaluating patient satisfaction with dignity therapy report a 91 percent satisfaction rate, with 76 percent of patients reporting a heightened sense of dignity after participating. [3] Dignity therapy asks patients to respond to questions like the following:

• “What parts of your life do you remember most or think are the most important?” “When did you feel most alive?”
  
• “Are there specific things you would want your family or friends to know about you?” “Are there specific things you want them to remember?”
  
• “What are the most important roles you have played in life (family roles, vocational roles, community-service roles, etc.)?” “Why were they so important to you, and what do you think you accomplished in those roles?”
  
• “Are there particular things that you feel still need to be said to your loved ones, or things you would want to take the time to say once again?”
  

Whether palliative professionals use dignity therapy in a formal, structured way or not, questions like the above can guide a health care team in helping patients to do legacy work. Dignity therapy has proven to be an effective way of helping dying patients preserve their self-respect and leave a legacy.

References

1. Byock I. The Four Things That Matter Most: A Book About Living. New York, NY: Free Press; 2004.

2. Chochinov HM. Dignity Therapy: Final Words for Final Days. New York, NY: Oxford; 2012.

3. Chochinov H, Hack T, Hassard T, Kristjanson L, McClement S, Harlos M. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol. 2005; 23(24):5520-5525.