"Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending." —Carl Bard
This document is part of a series that deals with end-of-life concerns, entitled The Art of Goodbye.
Many people assume that preparing for the end of life involves filling out forms at the doctor's or lawyer's office. Forms and checklists have their place and can be helpful, but they cannot address every issue because end-of-life concerns are complicated. Self-reflection is a helpful tool that begins to lay a foundation for planning while articulating people's complex and unique emotions, values, priorities, fears, and preferences when it comes to facing their own mortality.
Collecting Your Thoughts
Listed below are questions intended to help you assess what is important to you and why it is important to you. Collecting your thoughts in your own space and time has the potential to inform future conversations with loved ones. Before you begin to answer the questions, find a private spot where you will be comfortable and able to concentrate. These questions are deeply personal, and your responses to them will be unique. Take time and care to avoid what you think are the "right" responses and give considerable weight to your true feelings.
- Have you ever discussed or been taught about death? If you answered yes, how it did it come up in conversation? Was talking about death helpful?
- Do you feel it is important to talk about end-of-life concerns? Why or why not?
- Do you think it is important to communicate your concerns in person and in writing to your loved ones and health care professionals? If you have not yet begun, what is holding you back?
- Do you view death and dying in a negative light? If you answered yes, please explain.
- Do you think preparing for the end of life leads to a more emotionally, psychologically, and financially stable situation when a loved one passes? Briefly explain your answer.
- Have loved ones ever discussed their end-of-life preferences for care, finances, and legalities with you? Do you think it helped? Why do you think they chose to be prepared?
- Have you ever discussed your end-of-life concerns with loved ones? Why or why not?
Consideration of values on a personal level establishes a foundation for focused contemplation and eventual discussion. The organization Compassion and Choices developed a Values Worksheet to help people think about what matters most at the end of life. One way to begin to identify the things that really matter to you is to fill out the Values worksheet. Find a comfortable spot where you will not be distracted and take your time to evaluate the values listed in this worksheet.
Was this worksheet helpful? Do you have a clearer picture of the things that matter the most to you? Are you surprised by any of your answers? Do you see a pattern? You may want to take a few notes for further contemplation.
When you take time to think about your preferences and then communicate and document them, you are more likely to receive the support you want as the end of life approaches. Methods of care and ways to select someone to make decisions for you, should you become incapacitated, can be explored in a number of ways.
American Psychological Association
The American Psychological Association notes that "older Americans with chronic illness think about how they would prefer their lives to end and want a 'good death' without burdensome pain, symptoms, and technology" (APA, n.d.). To familiarize yourself with older adults' mental health needs near the end of life, see the APA's fact sheet: http://www.apa.org/pi/aids/programs/eol/end-of-life-factsheet.aspx.
National Hospice and Palliative Care Organization
The National Hospice and Palliative Care Organization is a nonprofit organization that deals with end-of-life issues. Palliative care combines compassion-focused and comfort therapies to support individuals nearing the end of life as well as their families. During your period of self-reflection, you may have questions about palliative and comfort care you want to discuss with a professional. They provide a toll-free help line at 800-658-8898.
The Five Wishes®
Another tool developed to help frame your thinking, identify your concerns, guide a conversation, and consider the role your loved ones will play is The Five Wishes®, developed by Aging with Dignity's founder, Jim Towey. Aging with Dignity is a national nonprofit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. Once The Five Wishes® document is completed and properly signed, Wishes 1 and 2 are valid legal documents under the laws of 42 states as well as the District of Columbia. Wishes 3 through 5 focus on comfort care, spirituality, forgiveness, and final wishes.
- Wish 1: The Person I Want to Make Care Decisions for Me When I Cannot
- Wish 2: The Kind of Medical Treatment I Want or Do Not Want
- Wish 3: How Comfortable I Want to Be
- Wish 4: How I Want People to Treat Me
- Wish 5: What I Want My Loved Ones to Know
An online version can be found at: https://agingwithdignity.org/programs/five-wishes/ (Aging with Dignity, 2016).
Personal reflection can also be a time for collecting information. Listed below are additional resources.
- Byock, I. (1997). Dying well: The prospect for growth at the end of life. New York, New York: Riverhead Books.
- Gawande, A. (2014) Being mortal: Medicine and what matters in the end. New York, New York: Henry Holt and Company.
- Goodman, E. (2016). The most important conversation you'll ever have. Accessed on July 14, 2016. https://theconversationproject.org
- Williams-Murphy, M., & Murphy, K. (2011). It's okay to die. MKN, LLC.
Start to determine your future by first taking personal time to gather information. Consider what is important to you and select the individual you would want to carry out your wishes. By exploring your individual concerns and values, you will be better prepared to initiate discussions with loved ones.
Aging with Dignity. (2016). Five Wishes® Online. Accessed on February 16, 2022. https://agingwithdignity.org/programs/five-wishes/
American Psychological Association. (n.d.). End-of-life care fact sheet. Accessed on June 27, 2016. http://www.apa.org/pi/aging/programs/eol/end-of-life-factsheet.aspx
Compassion & Choices. (2016). Values Worksheet. Accessed on June 21, 2022. https://compassionandchoices.org/docs/default-source/default-document-library/values-worksheet-only-final-6-29-20-pdf.pdf