At the end of life, the need to communicate honestly and to be understood by those around us becomes very important. What do our loved ones need to know about our end-of-life wishes? What does our health care team need to know?

This section is designed to help you, the person with terminal illness, consider some of the topics you may want to bring up with the people most involved in your life and your care.

Your Loved Ones

The people who love and care for you will want to help make this time as comforting and supportive as possible. For the most part, they will rely on you to provide information about what it is you do and do not want. This is a very emotional time for all of you, but if you all act with love, compassion and honesty through the decision-making process, good conversations can result. If you find the idea of having these conversations with your loved ones too difficult to manage by yourself, consider asking someone else you trust and respect, such as your clergy, a friend, or a trusted health care provider, to be with you.

Remember that only you know what you need and want. Others can make suggestions, but your wishes are the ones that matter most. Here are some topics and points to consider discussing with your loved ones:

1. Hope. If you have not yet fully accepted the fact that death soon is inevitable and you want to pursue treatments or other approaches, let your loved ones know what you want of them in terms of support and ask that they not argue against your hope. And there is more to hope than a cure. Hope can also be focused on the quality of your life, and your ability to do the things you want to do in your final days.
   
   
2. Honesty. Do you want to participate in conversations with your health care team about your condition, or would you rather ask your loved ones to handle this task? It's important to let both groups know your feelings about this, so your wishes can be respected.
   
   
3. Help with pain and symptoms. Your caregivers can be powerful advocates to help you get the pain and symptom control you need. Ask them to help with this, when you need that help. It's very important that the people caring for you believe you when you need help, and make it their mission to get you that help.
   
   
4. Where you want to be. Whether you want to be at home with hospice care or home health care, or whether you prefer to be out of the home and in a health care setting, it's important to let your loved ones know about your preference. If you want to be at home, it might be useful to talk about where you want to be if and when you need to stay in bed — in a quiet room away from the center of family life, or more centrally located, for example. The setting can make a big difference in your quality of life.
   
   
5. Company. Everyone at the end of life has individual needs about how much — or how little — company he or she wants and needs. Share your needs and wants with your loved ones, so they can respect your wishes. It's also a good idea to let them know how you feel about visitors outside the immediate family. Also give some thought to the nights, and whether you want someone with you at all times.
   
   
6. Conversation. Many people at the end of life have a deep need to talk about their feelings and their lives. In some cases, family members welcome these conversations, but are reluctant to initiate them for fear of upsetting the person facing the end of life. Help your loved ones by sharing your feelings about such conversations.
   
   
7. Final needs. If possible, give thought to your feelings about what should and should not happen at the very end of your life, in regard to matters like being placed on a ventilator to breathe, having attempts made to restart your heart if it stops, and so forth. Let your family and your health care team know of your wishes, place these in your Advance Directive document (see Making Decisions), and ask that your wishes be respected.

Your Health Care Team

Your health care team will be the people providing your day-to-day care, and it's useful to let them know how you want them to treat you. Bear in mind that it can often be difficult, if not impossible, for your physician or other health care team members to accurately answer that very difficult question, "How long am I likely to live?" They may try, but it is probably not realistic to plan your days based on the answer. Instead, it might be more reasonable to ask for a general sense of the time remaining to you.

1. Symptom management. Discuss how you want your pain and other symptoms managed. They will ask questions about this task, so they can shape how your symptoms are managed. If anyone tells you that nothing more can be done to manage your discomfort, do not accept this, and ask for others with greater expertise in end-of-life care to help you.
   
   Also let your health care providers know if you need assistance managing the emotional aspects of the end of life, including depression and anxiety. Both of these conditions can be helped with medication.
   
   
2. Conversations about your condition. Do you want to be involved in all such decisions, or do you want your health care providers to discuss these matters with your loved ones?
   
   
3. Assistance to your loved ones. Will your family and others participating in your care need help and instruction in taking care of your physical needs? If so, and if it is not automatically provided by your health care providers, request this training.
   
   
4. Final needs. Let your health care team know verbally and in writing, through your Advance Directive, what kind of care you do and do not want at the very end of your life. Topics in this conversation include being on a ventilator, having efforts made to restart your heart, being given nutrition by tube, and so forth. Make sure your team will respect your wishes. If not, then request others to provide your end-of-life care.

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