The following information came from my continuing education volunteer training, while serving at the Zen Hospice Project in San Francisco.
One of the barriers to compassionate interaction with someone whose dying is a fear of saying the wrong thing or not knowing what to say. This information from The Centre for Living with Dying presents some common questions and comments expressed by patients and families coping with illness and grief. Included are examples of suggested responses and responses that should be avoided. The two categories of responses are useful in helping illustrate the contrast between good and poor interactive listening techniques.
There is no right or wrong statement to make to an individual faced with crisis, whether it is their own illness or loss, or the loss of someone close to them. The best policy is to honestly be yourself, express your humanness and vulnerability and ask them to share their unique experience.
[•] = SUGGESTED POSSIBLE RESPONSES
[#] = RESPONSES TO AVOID
1. Why do I have to live so long?
[•] I don't know. How are you feeling about your life and living right now? Can you tell me how it's been to live your life?
[#] God wants you to. You have so much to live for. Divert or ignore the question.
2. Am I dying?
[•] I don't know. Do you feel like you're dying? Can you tell me what you think is going on with your body?
[#] Don't worry. You're going to be fine. Yes. What makes you say that? Calm down.
3. Is she/he dying? (Roommate)
[•] Do you feel like she/he is dying? I don't know. She/he is very sick right now. It must be hard to be in the same room with him/her sometimes. How is that for you?
[#] Oh, no, she/he'll be fine. You shouldn't be bothered with those things. Don't worry.
4. I'm afraid to die.
[•] Dying is scary, unknown. I don't blame you for being frightened. What is your biggest fear right now? What does dying mean to you?
[#] Don't be afraid. You're not going to die. Think about something else. What about some hot chocolate?
5. Don't grieve for me when I die.
[•] I hear you don't want me to hurt. Grief for me is a natural process when someone I care about, who touches my life, goes away or dies. I care about you, so I'll feel the separation from you — and that's OK with me.
[#] You're not going to die. I promise not to grieve, if you promise not to die.
6. Don't leave me alone to die.
[•] I will be here if I can. What would it be like to die alone? What's your biggest fear? What do you need to make that easier for you? That must be frightening for you. It sounds important to you not to be alone.
[#] Don't worry, you're not dying. Of course not, I'll be here. You're never alone in God's hands. I'm sure someone will be here.
7. I’m ready to die. — I'm old.
[•] It feels like you're tired right now — of living. What is it like to feel old and ready to die? Are you tired of pretending to want to live? Do you want to die? What does it mean — that you are ready to die?
[#] You're not ready to die — you're not very old. You have everything to live for. Don't talk like that. That's silly.
8. I don't want to upset my family when I die.
[•] I hear your love and concern for them. Is there any way you can talk about this with your family? How would you like them to feel when you die? You must really care about your family to say that. How would it feel for you if one of your family members died?
[#] Don't worry about them. Let's worry about you now and getting you well. You're not going to die. Don't feel responsible for them. It's in God's care.
9. Will this - - - kill me?
[•] What is the most frightening part of this (cancer, treatment, illness, procedure) for you right now? It feels like you're very worried about what might be happening to you. Let's talk about the details of what is going to be happening and what that might be like for you.
[#] Of course not. you'll be fine. Don't be silly — it's a simple procedure. Don't be such a baby. Well, it might kill you.
10. Will you pray for me?
[•] Yes, I will send you my love, energy and care. How would you like me to do that/pray for you? Can we pray together?
[#] No, I don't believe in God. Prayers don't work anyway. I am so glad you finally see the light/the right way.
11. What to say to relatives of patients who are dying or who have died.
[•] It must be really hard for you to experience him/her so sick. How has it been for you throughout the illness? You have done such a good job of loving and caring for him/her. BE gentle with yourself. Grief is a long, healing process that takes time.
[#] It's in God's hands. He/she's with the Lord now. Time heals all wounds. You should have visited him more often. It's for the best. You can't see your mother now. She expired about 20 minutes ago.
12. What to say to family of deceased at funeral.
[•] Share you own honest feelings of helplessness, sadness and love, and that you want to be there for them. Gently touch if appropriate. People have shared that it is not so much what words you say, but rather the quality and honesty of your presence that is comforting. Share special memories you have had with the deceased when appropriate. Write a "love note," particularly several weeks or months down the road.
[#] Time heals all wounds. It's God's will. Be strong and live your life. She/he would like it that way. I know just how you feel. Any cliche or platitude that gives the feeling of a pat answer or explanation to their pain.
13. I don't want to live like this anymore.
[•] Validate the feeling of what has been said. What is the most difficult part about "living like this?" What does "living like this" mean for you from day to day?
[#] Don't talk this way. You know you want to live. It's a beautiful day.
14. I am no use to anyone this way.
[•] When you have been "useful" all your life, it must be hard to feel like you're losing that now. What can't you do now that you were able to do that made you feel useful? That gave meaning to your life? Is there one thing you could do now that would help you feel useful? Maybe we can explore some different ways you can take some power over your daily life.
[#] You don't have to be useful now. Just relax. Enjoy being lazy.
15. Why couldn't it be me instead of him/her?
[•] Sometimes, it's really difficult being the one left behind. How is that for you? What pain would you like to take over for him/her? Is there anything you would want him/her to know? Is there anything you have to say to him/her?
[#] Now don't feel bad. That's life. It is as it's supposed to be.
16. I have got everything ready to die.
[•] What have you done to prepare to die? Tell me more about what you mean by that. Do you feel ready to die now?
[#] Now, don't say that. You're not going to die. You've got lots of time left.
17. Refusing to cooperate in treatment in order to hasten death.
[•] Are you refusing treatment because you are feeling tired or wanting to die? What is it you don't like about this treatment? Can we talk about it? Perhaps we can work together to make this treatment less intolerable.
[#] Of course, I can't do anything like that. What's wrong with you? We're trying to make you better. Now just stop that silly talk.
18. If they can't help you — they let you die.
[•] Are you feeling abandoned right now? What do you need? It must feel that way sometimes, when we are so busy running around you. 1 Let's stop for a moment and I would like to hear how you are really doing today. Do you feel like you are going to die?
[#] We do no such thing. We are not going to let you die. We're doing the best we can.
19. What about premonitions (thanking people for caring for them and dying the next day)?
[•] Pay attention to statements like this. When in doubt as to what they mean — ask the client directly. This is often their way of saying goodbye and you may want the opportunity to say your goodbyes and share your feelings of love, care or special thoughts with that person. Again, there is no right or wrong thing to say. Each interaction and experience we share with another human being will be unique and different. We feel differently about each client and family member we work with. We have different reactions to their illness and death. Trust your own "gut" feelings and honor what you need to do. By acknowledging our own process, we can honor, respect and appreciate other's feelings, needs and individual journey.
The Centre for Living with Dying © 1987
Replies
Kathleen
This is just what I was looking for to include in my volunteer orientations. I have a newly graduated volunteer who seems a bit timid and unsure when going over active and reflective listening skills. She suggested we add a Do's and Don'ts list for new volunteers. Do you have anything like that as well?
Thanks, Kathleen
Resources for Hospice Volunteer Managers
Greg Schneider
HVA President
HCF Creator
I am an MSN student with the University of Phoenix. I need to interview staff and volunteers on feelings about end of life care including issues about pain control, symptom management, etc. and what they feel should be included in plan. Are you a volunteer, nurse or nursing assistant? If so I was wondering if you could help me with this assignment. Thank you.
Sure. I will send you an e-mail and we can discuss.
Greg