It’s About the Conversation
Dealing with a serious illness can be stressful, especially when there are important decisions to be made. During these times, the healthcare team and family may not know what the patient would choose. How can I help my family and my healthcare team understand my wishes?
- Think carefully about your wishes before talking with your family and health care team. Everyone has different ideas about what is right for them. For example, are there basic things that make “life worth living” such as being with and recognizing your family? Are there certain life support measures you would or wouldn’t want if you were terminally ill? If unable to speak, who could be trusted to speak for you and express your wishes?
- Once you have considered these issues, speak with the people closest to you. Sometimes, a close friend or family member may not want to discuss these wishes. Let the person know this is important to you and should be taken seriously. It may help to use a familiar example: “Remember when Aunt Susan had Alzheimer’s disease… if that happens to me, I would want….”
- Discuss your wishes with your healthcare team at least once a year and more often if your health changes or you are hospitalized. Provide your healthcare provider with any written documents expressing your wishes
- If diagnosed with a serious life-limiting illness, the healthcare team (preferably the palliative care team) will discuss your wishes regularly. Remember that you are “in charge” of your own decisions when facing a life-limiting illness. Only when you can no longer speak for yourself will any healthcare agent or written document speak on your behalf
- Consider making a video or audio recording expressing your thoughts and wishes to share with loved ones or even writing a letter
- If you name someone to be your health care agent (a trusted friend or family member to speak on your behalf and make decisions if you are unable), be sure to share your feelings and wishes with them ahead of time
- Expressing your wishes to those closest to you may be very comforting in a time of crisis and allow them to honor what you value the most
Advance directives are a way to communicate your wishes in writing if you cannot speak for yourself. Some persons create an advance directive during estate planning. It is important to keep a copy of this document and to provide a copy to your healthcare team.
Some examples of advance directives
- A Living Will is a written statement of health care wishes to be carried out if you are unable to communicate (for example: decisions related to life support, nutrition, dialysis)
- A health care agent, sometimes called a “Health Care Power of Attorney,” allows you to name a trusted friend or family member to speak on your behalf and make decisions if you are unable
- Examples of other advance directive documents include “Five Wishes,” MOLST (Medical Orders for Life-Sustaining Treatment), and POLST (Physician Order for Life-Sustaining Treatment). Additional information for these supplemental materials can be found at: https://agingwithdignity.org/ and https://polst.org/
Supporting you and your family
How will the healthcare team support you and your family?
- Respect your wishes
- Encourage you and your trusted friends and family to discuss important decisions such as: who makes decisions if you are unable to communicate, what kind of medical treatment you want, things you want your loved ones to know, and how comfortable you want to be
- Assist you and your family with communicating your wishes verbally or in writing
- Direct you and your family to resources for advance directive documents, such as Caring Connections, a public site to download state-specific advance directives https://www.caringinfo.org/planning/advance-directives/by-state/