Most articles on elder care, mine included, tend to tout the benefits of planning ahead for serious illness. But what does “planning ahead” really look like? In honor of National Family Caregiving Month, I share the story of Gus, my advance care planning hero.
Gus (not his real name) turned ninety years old last April. His beloved wife of nearly seventy years died two years ago. He is a member of the Lutheran congregation I serve as pastor, and I’ve visited him monthly for the last two years. I conduct services of Holy Communion in the small workout room of the assisted living center where he resides. I bring the altar flowers from the previous Sunday and we distribute them as we walk the halls (to be fair, Gus speeds ahead of me in his motorized scooter). Giving away flowers make us very popular. We then sit in the communal dining room, play dominoes, and eat lunch. Gus has shared with me his life story, the joys and sorrows of his family, and he trusts me as his pastor.
Over the summer, he decided to get his proverbial house in order. First, he invited me to lunch with his daughter. She serves as his power of attorney and medical proxy, but I am listed as his first contact should he have a medical emergency since his daughter lives several hours away. Gus wanted us to be on the same page concerning his end of life wishes.
Then, he purchased colored file folders. All red folders relate to health, from a copy of his Do Not Resuscitate order to his records from the VA clinic related to his new hearing aids. Green folders relate to money, including his will, pension, and so on. Blue folders organize his life story, including one for his life-long love, the Chicago Cubs, as well as records of his service in World War II and the Korean conflict. Beholding his file folders, he concluded, “Now, you’re ready to do my funeral.”
Hopefully, Gus’ funeral won’t be for some time. He is in relatively good health, though he reminds me, “I’m 90, you know.” Walking alongside Gus these past two years has given me a glimpse of what planning ahead can look like for families and the professional people who serve them. As his pastor, I can work closely with his family to ensure he can live and die with autonomy and dignity.
Such partnerships should be an integral part of how we plan for the end of life. For example, I was inspired by the recent study reported in the Annals of Internal Medicine on personalizing death in the ICU. In the study, the patient came up with three wishes with input from his or her family and clinicians, who worked to implement them before the patient died. The wishes themselves revolved around several honorable goals: “humanizing the environment, tributes, family reconnections, observances, and ‘paying it forward.’” More than forty percent of the suggestions for wishes came from the clinicians in the ICU. Even in that stark and sterile place, clinicians are ready to partner with patients and families in planning how to make the end of life meaningful.
November marks National Family Caregiver Month. The number of Americans who provide care for an elderly family member or friend continues to rise. According to the National Alliance for Caregiving and AARP, two of five Americans provided unpaid care to an adult age 50 or older in 2014. Yet the number of people planning ahead for their death remains abysmally low. The Pew Research Center reports that the 37 percent of Americans who have thought a great deal about the end of life have usually written down their thoughts and communicated them to family and related professionals. However, the majority of adults have thought little about the end of life, and thus have done less to plan ahead. Yet testimonies continue to abound of family members who express great thanks and relief for their loved ones’ advance planning.
Planning ahead involves two critical steps:
1) Make a plan. My favorite advance planning tool is 5 Wishes. I first discovered this document, which was developed by Aging with Dignity, in the aftermath of Terri Schiavo’s death in 2005. After fielding calls from the media and local Baton Rouge community who were confused about whether hospice kills people, our hospice organization began using 5 Wishes in churches and local civic groups to explain end of life care and the importance of planning for the type of care one wants. 5 Wishes provides space to designate a healthcare proxy, to express one’s wishes for medical treatment, to record messages of love and legacy for family members, and to list one’s wishes for a funeral and burial.
2) Communicate the plan. All planning will be for naught if family members, medical professionals, and clergy aren’t aware of the plan. The Conversation Project and Death over Dinner both offer great advice for how to begin the conversation. AARP’s The Other Talk offers guidance for parents to talk with their grown children.
Living the plan entails family and professionals working together. In the ICU, the 3 Wishes Project works well. For Gus, file folders, dominoes, and conversations over meatloaf work well. Taking the time to find what works for you will be well worth the effort.