Kimberly Callinan, MBA, MPP
Kimberly Callinan, MBA, MPP, certified end-of-life doula and president and CEO of Compassion & Choices, a nonprofit that advocates for the rights of people at the end of their life.
CompassionAndChoices.org
The famous saying, mistakenly attributed to Benjamin Franklin and Mark Twain, about death and taxes being the only certainties in life holds true to this day. Yet while we usually acknowledge the annual April 15 filing deadline, most of us don’t readily acknowledge the inevitability of dying—at least not when we presumably still have plenty of time to plan for the peaceful death we are hoping for. It is such an important and deeply personal topic, yet it’s rarely examined closely.
The people who have the easiest time with dying are those who have lived their lives to the fullest and have little unfinished business. If they had rifts with loved ones, they mended them…if they had a list of goals, they completed the important ones…and they addressed any regrets along the way.
People who have the most difficulty saying a peaceful good-bye are those with unresolved issues, such as a longstanding fight with a loved one that they now realize wasn’t worth having.
Takeaway from these extremes: Start thinking about your legacy now, no matter your age. Don’t wait until the end to take steps that will give you closure.
Start by recognizing that we all are going to die and that now is the time for introspection. We all are terminal.
Think about who and what matters most to you. Prioritize who you want to spend time with and what you want to focus on for the rest of your days. Live every day with completeness, so that if your life were to suddenly end, your loved ones wouldn’t be left wondering and incomplete…or you wouldn’t spend your last moments scrambling to undo a wrong or say unspoken things.
If you’ve had a bucket list since your younger days, look at it and see where you are. Some things that you have not yet crossed off that list may not hold as much significance as they once did. Most of these lists are made up of things, and those things usually don’t reflect the totality of one’s life—not having achieved some of them actually may be inconsequential to you now. Look for what has true meaning for you, and gravitate toward those areas.
Resolving any open issues frees you up to spend the rest of your life in positive ways. People are able to do amazing things when they start to think about their legacy and what they want to leave behind…even when they have little time left. Example: One man decided to compile a book about his family’s history, including how they first came to the US, to leave as his legacy. He dictated it to his daughter as a way to make the end of his life meaningful.
Some people decide to write their own obituary or plan their own funeral to define how they want to be remembered. Example: My father-in-law, a well-known singer from Baton Rouge, planned his funeral service. He requested three choruses he had sung with to perform. He selected the readings and chose who would give the sermon. Acts like this not only allow you to have a say in planning your death but also can help your loved ones cope with your passing—they won’t have to guess at what you wanted.
Creating your legacy is a way to document what’s important to you—your life story, experiences and values—and leave it for your loved ones. At the same time, it will remind you that your life had meaning. For people living with a terminal condition or facing other difficult circumstances, writing your legacy also can be a way of coping. Resource: The Stanford Letters Project
(Med.Stanford.edu/letter) has templates and ideas to help you get started.
It’s important to have good-bye conversations with loved ones so you can express end-of-life issues that are important to you. These talks may be difficult for them, even if your death isn’t on the horizon. However, they can be very meaningful. There’s no one right way to approach this conversation, but there are things you can do to make it easier for loved ones…
Give your loved one (or ones) control over when the conversation will take place. You might say something like, “All of us are going to die, and my time may be near or far away, but I want you to know what’s important to me. Can we schedule a time to talk in the next few weeks? When is good for you?”
Let them know that you want to have the conversation out of love. You might say, “When I can no longer make decisions for myself, I want you to make them for me because of how much you mean to me. I’d love to talk with you about this to be sure you are comfortable in this role and are fully prepared.”
Let them know it can bring you closure as well as make your dying easier for them when the time comes.
When you are facing death, you will feel a rollercoaster of emotions. The five stages of grief (denial, anger, bargaining, depression and acceptance) are well-known, but whether you’re the dying person or a grieving survivor, you likely won’t go through them in a linear fashion. Be prepared for up days and down days—one day, it might be anger…another, denial (with acceptance hopefully in there somewhere). Know that whatever your emotions, you’re not wrong for having them.
More and more people are turning to the idea of working with a doula. The dictionary defines a doula as someone who counsels a new mother in the arts of childbirth and early child rearing. An end-of-life doula, also called a death doula, can help you at the terminal phase of your life’s journey. This might seem like a new concept, but it has been part of many cultures for centuries to help a dying person control his/her death. An end-of-life doula acts as an extension of you, supporting your wishes surrounding your death and filling a need that goes unmet within the traditional medical system. The doula can help you navigate end-of-life issues and find meaning…assist you with advance care planning and legacy planning…offer relief to your caregivers…and facilitate difficult conversations with your family and let them know what to expect at the end. Most people engage a doula when they are close to dying, but end-of-life doulas can assist you with death planning at any time in your life.
In the US, end-of-life doulas often are trained professionals who are certified through a program such as the ones at University of Vermont and the International End of Life Doula Association. Some offer their services for free…some charge for them. There currently is no regulatory body for end-of-life doulas, so ask for recommendations from your medical providers, a hospice staffer, a patient navigator at your hospital or even friends. Also: There is a member directory on the site of the National End of Life Doula Alliance at NEDAlliance.org. To find the right fit, always ask the doula about his/her philosophy, training and credentials, and how many people he has helped. Of course, as with any service, you are welcome to ask for references.
