Most of us dread discussing end-of-life issues with our parents or spouses. Many of us wait until too late or have only superficial conversations about this important topic. The result of not having this conversation is a lost opportunity to perform a last, great act of love for someone.
To face the difficult conversation about end-of-life care we need to think first of the person facing this transition. As sad and uncomfortable as we may be, it is likely much worse for them to be contemplating the end. Here are some suggestions for guiding the conversation(s) and gathering the information you need to act as your loved ones voice and advocate during this difficult time.
- Remember that this is a role-reversal. Likely this is your parent and the relationship has always been about them caring for you. Now is your turn to care for them and to help them allow you to do so. Approach the conversation with a recent example of someone who has passed away with unnecessary complications. “Mom, I remember that you were really upset about all the confusion regarding Aunt Betty’s care at the end. I know you would hate to go through that same situation.”
- Never assume you know what their preferences. You may be surprised to discover that they have definite opinions on care, treatment, and even funeral and burial plans that are distinctly different from yours. You family may be more willing to have the discussion if it is to help you. “Dad, I know you are relying on me to help take care of you when the time comes. I want to make sure I get it right and make decisions the way you would make them.”
- Despite the difficulty of the conversation, don’t rely on flippant comments such as “pull the plug”. It isn’t specific enough for you to have confidence in making decisions at later points, especially if they can no longer voice an opinion. You may have to bring up the topic several times to get meaningful information. Don’t pester or bully, but be persistent in expressing your love and concern and your commitment to being a good advocate.
- When discussing these subjects, focus on life, not on death. What brings them happiness and joy? What surroundings or people provide comfort? What do they look forward to? What makes a day worthwhile in their eyes? If time is limited, what are their priorities? Be as specific as possible. Fulfilling these priorities will be the basis of lasting memories.
- What fears to they have about the end of life? Is it pain? Is it leaving someone behind? Unfinished business? This may change over time, but identifying specific fears can give you guidance on how to comfort someone. Confirm with the physician that comfort medications will be available and administered as necessary. Find ways to reassure them that family left behind will be fine, despite missing this person. Help them put their affairs in order.
Always keep in mind that fulfilling this trust is a last great act of love for this person. Remember them as a person and make those decisions from their point of view, even if it is not your own. The more information you have, the easier it will be to speak in their voice, with confidence and compassion.
For additional information check out the following resources: Talking About Death Won’t Kill You, Virginia Morris and The Conversation, Angelo E. Volandes, M.D. Also, there are several videos available on PBS that tackle these issues, including one that aired recently called “Being Mortal” featuring Dr. Atul Gawande.
© Kirsten Schroeder Larsen, P.A. 2015