Beginning Conversations About End-of-Life Decisions
"Why should I think about dying? I’m too busy living."
"Don’t talk like that. You’re not going to die. You’ll live forever."
Death. It is the ultimate taboo. No one wants to think about death, much less talk about it. It’s painful to discuss a time when we, or the people we care about, will face an illness or injury that prompts the need for end-of-life decisions. Yet without such conversations, medical emergencies can take us by surprise.
"Would he want hospice care? We never got the chance to talk about it."
"I don’t want her to think I am giving up on her."
Conversations about end-of-life care often take place in a hospital hallway, in the midst of a crisis. Then, decisions must be made quickly and under stress. Family members or friends may make their "best guess" about what a loved one would want. Taking time to have these conversations with those we love -- well before a crisis -- may be one of the most caring gifts we can give them.
"I want to live out the rest of my days to their fullest."
"When I die I want to be at home, comfortable, and surrounded by those I love."
What are some of the choices we can make? End-of-life planning includes:
- Taking charge and staying active in decisions about your health care, your family, and everyday living;
- Finding meaning at the end of life;
- Managing pain and symptoms;
- Finding emotional support;
- Seeking spiritual growth;
- Setting personal goals;
- Bringing closure to personal relationships;
- Making career/work decisions;
- Making financial decisions;
- Providing for loved ones after death;
- Choosing where you’d like to die -- whether in a hospital, at home, or in a hospice setting.
For each of us, the end-of-life choices that we make with our friends or families will be unique. There is no right way or wrong way to choose end-of-life care. The important thing is if you care for someone – whether it be a spouse, parent, child, neighbor or friend -- it’s time now to talk about end-of-life options – well before you need them. Everyone over 18 should do this.
Who should you consider talking with about these life matters?
- Family
- Friends
- Physician
- Caregiver
- Neighbor
- The person you would choose to act on your behalf if you should someday become unable to speak for yourself.
How can you begin the conversation?
DO YOUR HOMEWORK -- Before beginning the conversation, learn more about the end-of-life care options available in your community. The Indiana Hospice and Palliative Care Organization has many resources available. Call us toll-free at 1-866-254-1910, or visit our website at www.ihpco.org.
CHOOSE THE SETTING -- Find a quiet, comfortable place free from distraction.
LOOK FOR OPENINGS – Use an article or a book as an excuse to bring up the subject. Or, use an event in your life or your loved one’s life as a springboard. Discuss your own end-of-life planning, and ask your parents’ or loved one’s advice.
ASK PERMISSION -- People cope with end-of-life issues in many ways. Asking permission to discuss this topic assures your loved one that you will respect his or her wishes and honor them. Some ways of doing this could be: "I’d like to talk about how you would like to be cared for if you got really sick. Is that OK?" Or, "If you ever got really sick I would be afraid of not knowing the kind of care you would like. Could we talk about this now? I’d feel better if we did."
TALK ABOUT IT – You’ve begun this conversation because you love this person. Focus on your desire to help him or her maintain a full and happy life, even during difficult times. Allow your loved one to set the pace, and offer support by nodding your head in agreement, holding your loved one’s hand, or reaching out with a comforting touch.
BE A GOOD LISTENER -- Sometimes just having someone to talk to is a big help. Be sure to hear what the person is saying. Listen for the wants or needs that your loved one expresses. Focus on their spiritual, emotional, medical, financial and personal concerns. Show empathy and respect by addressing these wants and needs in a truthful and open way.
ALLOW CHOICES – Recognize your loved one’s right to make his or her own choices, even if you disagree.
BE PATIENT -- Don’t expect to cover everything at once. It will probably take several conversations. Remember: it’s a process.
TALK OFTEN -- Even after you’ve discussed your or your loved one’s wishes, talk about them again from time to time. These conversations affirm that you care for each other, and ensure that personal values and preferences will be known, remembered and honored.
BE PERSISTENT -- If at first you don’t succeed at starting the conversation, try again. The hardest conversations are often the most important.
Questions to Stimulate Conversation About End-of-Life Decisions:
- What in your life is important and meaningful?
- What do you still wish to accomplish in life?
- What life events have given you the most joy?
- What life events have brought you the most sadness?
- What beliefs influence your thoughts about life and dying?
- What concerns do you have about your health or future health care needs?
- What are your fears when you think about what the journey might be like at the end of life?
- What do you hope for when you think about what the journey might be like at the end of life?
- What kind of care do you want (and not want) for yourself if you’re no longer able to make your wishes known, such as after a stroke or an accident?
- What do you value most about your physical and mental well-being?
- Are there circumstances under which you would refuse or discontinue treatment that might prolong your life? If so, what are they?
- Would you want to have a hospice team or other palliative (comfort) care available to you?
- How do you feel about donating parts of your body when you die?
- If you wrote your own eulogy or obituary, what would it say?
- How do you want to be remembered?
- What do you think you will need for comfort and support as you live out your last days?
- Do you think forgiveness will be important to you at the end-of-life? If so, how will you seek it and from whom?
- If you could plan it today, what would the last day of your life be like? Where would you go? What would you do? Who would you share the time with?
- Would you want to make a final visit to a special place, family or friends? If so, where would you go and what would you do?
- Talk about illness and how it has affected your life.
- Which of your five senses do you value most?
- Describe the funeral service you would like held for you.
- Talk about a childhood experience with death.
- How do you want to spend the last year of your life?
Conversation Starter
The Conversation Starter is a tool to help you begin end-of-life conversations with the people you care about most in your life. It includes instructions and 24 discussion cards that:
- Encourage meaningful conversations about end-of-life.
- Improves listening.
- Promote mutual sharing about the things that matter most in people’s lives.
- Enhance self-discovery.
- Enhance relationships between family and friends.