A lot of us are planners. We plan work projects, celebrations, careers, family vacations, and retirements. However, the one area that most of us avoid thinking about, much less planning, is the end of our life. After all, we don’t plan on having a terminal illness. We don’t plan on dying any time soon. Decisions about end-of-life care are deeply personal, and are based on personal values and beliefs. No one wants to think about end-of-life issues when there are so many other happier activities to fill our calendars.
Still, at some point in time many of us will face making decisions about the dying process. How do you bring up the topic? When do you bring up the topic? Who do you talk to? Thinking about your end-of-life wishes, also known as advance care planning, can be hard and overwhelming. Most people expect their doctors to start the conversation about end-of-life planning – but only when it’s necessary and not a moment sooner! That’s especially true for people with cancer, especially when treatment may no longer be working. Many cancer patients and close family members may be thinking about discussing end-of-life issues with their doctor when the time comes, but where do they begin? [more]
How to begin
It starts with you. You must take the first step by beginning the hard work of emotional homework: exploring your values, beliefs, desires, and fears regarding end-of-life issues. During my career as an oncology nurse, many terminally ill patients and families have shared with me a wide range of concerns: fears about dying, understanding prognosis, achieving important end-of-life goals, and attending to physical needs.
You might ask yourself: what are my fears? Am I afraid of the possibility of pain? Not being clearly understood by those around me? Dying alone? Being overly-sedated or in a lingering state of unconsciousness? Leaving loved ones or unfinished projects behind? Leaving your loved ones without adequate financial resources? Dying in a strange place? The answers to these questions will be different for everyone. It’s important to get a clear understanding of your feelings around these topics before planning. Would you plan a vacation without doing some homework first? It should be no different when tackling important conversations about the end of your life.
Getting the conversation started
It’s all about talking. Talk openly to family and friends about your values and beliefs, your hopes and fears about the last stages of your life.
Good open and honest communication between you, your loved ones, and your doctor before an emergency happens can jump start the process of creating a comprehensive treatment plan that’s medically sound and matches your wishes and values. It’s important to have this plan in place before it’s actually needed.
Ask your doctor for a time when you can share your ideas and questions about end-of-life treatment and medical decisions. You might suggest setting some time aside during your next scheduled appointment with your doctor. Tell him or her you want guidance in preparing advance directives, like health care power of attorney, living wills, do-not-resuscitate, and other agreements like these, especially if you are already ill or treatment is no longer working. Ask your doctor what you might expect to happen when you begin to feel worse. Let him or her know how much information you wish to receive about your illness, prognosis, care options (like hospice), and what you might expect this time to be like.
You may ask your doctor specifically:
- Will you talk openly and honestly with me and my family about my illness?
- What decisions will my family and I have to make, and can you make recommendations to help us make these decisions?
- What will you do if I have a lot of pain or other uncomfortable symptoms?
- How will you help us find professionals with special training when we need them (e.g., hospice care, palliative care specialists, spiritual leaders, social workers, etc.)?
- Will you let me know if treatment stops working so that my family and I can make appropriate decisions?
- Will you support me in getting hospice care?
- Is there someone on your staff who can help me understand if/how my health insurance will help me get the care I need?
- Will you still be available to me even when I’m sick and close to the end of my life?
Preferences for the end of life
Even after asking and getting answers to all the hard questions and concerns regarding end-of-life issues, it’s hard to predict what the dying process will be like for any one person – it’s also hard to know when it will happen. Preferences for care at this time will be different from person to person. For example, you may decide to spend your final days at home, surrounded by family and friends while under the care of hospice. Yet others may prefer to be alone, or they may want to be in the hospital getting treatment right until the very end.
Your decisions may also change over time – you may have wanted everything possible done to prolong your life at one point, but decide to change your focus to comfort care only as time goes on. Someone else who originally declined treatment may agree to an experimental therapy or clinical trial that may benefit future patients with the same condition.
No matter how a person chooses to approach the end of their life, planning for end-of-life care can help them be sure their values and preferences are honored. It all starts with you, your honest examination of what you want and what’s important to you. Once you have clear picture of what you want or don’t want at the end of life, don’t keep it to yourself. Talk openly, honestly and frequently with your family and healthcare team about your wishes. And perhaps most importantly, get your plans written out. Create the documents needed to make your wishes as clear as possible and share them with your loved ones and your medical team.
Beasley is an oncology nurse education for the American Cancer Society.