Communicating End of Life Wishes:
Decisions about end-of-life care are deeply personal and are based on your values and beliefs. It is impossible to foresee every circumstance or illness while you still have the ability to make informed decisions about your care. Therefore, it is essential to think in general about what is important to you. Conversations that focus on your needs and why you are making them will relieve your loved ones and health care providers of the need to guess what you would want when it comes to making end of life decisions.
It's all about talking… talking with your loved ones about your health care preferences; talking with your doctor about your options so that you can make informed decisions; and talking with your health care agent so your wishes are honored if you cannot make decisions yourself. Talking before a crisis can help you and your loved ones prepare for difficult decisions related to health care at the end of life.
How to talk with your loved ones about end-of-life care issues:
When discussing your end-of-life wishes with loved ones, you should consider:
•Overall attitude toward life, including the activities you enjoy and situations you fear
•Perception about independence and control, and how you feel about losing them
•Religious or spiritual beliefs and moral convictions, and how they affect your attitude towards serious illness
•Attitude toward health, illness, death, and dying
•Feelings toward doctors and other caregivers
Remember, it's up to you to take the initiative and express your wishes. Your family or loved ones are not likely to raise the issue for you. Talking about end-of-life issues can be difficult for anyone. To ensure that your end-of-life wishes are honored, it is essential to discuss your wishes with your loved ones now – before a crisis develops.
You may want to use the following occasions as opportunities for having this conversation:
•Before and after annual medical checkups
•During informal family gatherings
•Around significant life events, such as marriage, birth of a child, death of a loved one, and retirement
•While you are drawing up your will or doing other estate and financial planning
Ask Your Loved Ones… An important part of communicating your end-of-life wishes is discussing with your loved ones what you may need from them if you are faced with a life-limiting illness.
Some questions that you may want to ask are:
•Will you seek out information about my disease, advance directives, your roles as caregivers, and what to expect as I get sicker and near the end of life?
•Will you be able to respect my wishes, even if they are different from what they were at one time, and if you don’t agree with my decisions?
•If I cannot communicate for myself, will you advocate for me to make sure that what I want is done, even if you would not make the same choices yourself?
•Will you stay with me even if the going gets rough?
How to talk with your health care agent about your end-of-life care wishes:
Your health care agent needs to know about the quality of life that is important to you and when and how aggressively you would want medical treatments provided. Talking to your agent means discussing values and quality-of-life issues as well as treatments and medical situations. Situations can occur that you might not anticipate, your agent may need to base a decision on what he or she knows about your values and your views of what makes life worth living. These are not simple questions, and your views change over time. For this reason, you need to talk to your agent in depth and often.
What kind of treatment would you want if you were in a state of prolonged unconsciousness and were not expected to recover?
•Would you want life support or would you rather receive palliative (comfort) care only?
•What are your views about artificial nutrition and hydration (tube feeding)?
•Do you want to receive these types of treatment regardless of your medical condition? On a trial basis? Never?
•If your heart stopped, under what circumstances would you want doctors to use CPR to resuscitate you?
When is the right time to talk with your doctor about your end-of-life care wishes? Do not wait until a crisis occurs before discussing concerns about end-of-life treatments with your doctor. Chances are that he or she is waiting for you to start the conversation.
When you discuss your concerns and choices:
•Let your doctor know that you are completing advance directives.
•Ask your doctor to explain treatments and procedures that may seem confusing before you complete your directives.
•Talk about pain management options.
•Make sure your doctor knows the quality of life that is important to you.
•Make sure your doctor is willing to follow your directives. The law does not force physicians to follow directives if they disagree with your wishes for moral or ethical reasons.
•Give your doctor a copy of your completed directives. Make sure your doctor knows the name and telephone number of your appointed health care agent.
•Assure your doctor that your family and your appointed health care agent know your wishes.
You may ask your doctor specifically:
•Will you talk openly and candidly with me and my family about my illness?
•What will you do if I have a lot of pain or other uncomfortable symptoms?
•How will you help us find excellent professionals with special training when we need them (e.g., medical, surgical and palliative care specialists, spiritual, social workers, etc.)?
•Will you let me know when treatment stops working so that my family and I can make appropriate decisions?
•Will you support me in getting hospice care?
•Will you still be available to me even when I'm sick and close to the end of my life? •Will you visit with my family and help them with their spiritual concerns about my illness?
•Will you just sit and be with me, even if I don't want to talk?