Maybe it is denial. Maybe it is what has been called “anticipatory grief,” or a reluctance to think about losing a loved one. Or maybe it is something entirely different. But whatever the cause, the result is the same: Many families fail to deal with issues surrounding the end of life.
In other words, neither aging parents nor grown children want to confront the myriad questions surrounding failing physical and mental health and, ultimately, death. These include whether seniors value quality of life or longevity, or, more simply, heroic care versus “do not resuscitate” instructions; where a senior would like to live, if 24-hour care is needed; who should make life or death decisions; and the many other questions that may be appropriate for each family and individual.
The Elephant in the Room
“Talking about death is like confronting the elephant in the room,” according to Heidi Garvis, an Aging Life Care Professional™, Certified Senior Advisor® and co-founder of Caring Considerations, a Northern Virginia-based organization that helps families explore options for senior living and care. “Death is inevitable, but people don’t want to talk about it,” she observes.
Based on her experience, Heidi believes it is much better for families to talk about death and the physical and mental infirmities that so often precede it than to ignore end of life issues and death.
The questions then become when and how.
When and How to Talk About Death
When may simply become a matter of opportunity. Even though families traditionally gather for holidays and birthdays, celebrations are not a good time to talk about death, Heidi believes. Instead, a neutral setting is preferable.
When meeting clients, Heidi says she always asks whether these issues have been discussed. If not, she finds herself in the role of facilitator. But in general, she says, “I think the parents should bring it up because it’s their life and they should want to be in control of the conversation.” But, and maybe denial plays a role here, parents simply may not want to face end of life questions.
If parents don’t bring up the subject, then a child needs to do it, even if the subject is uncomfortable. “Maybe the adult child can say something simple like ‘Mom, when you are ready to talk about your later years and what you want, will you let me know,’ ” Heidi suggests.
Another option is a third-party, outside facilitator, a role Heidi often plays by asking the questions that will start the conversation among family members.
Maybe having conversations about the end of life won’t resolve nettlesome issues for a family, but the discussion will give adult children, who are the potential caregivers, a sense of their parents’ desires for the future should either, or both, of them become so incapacitated that they need full-time care, and that is important for everyone involved, Heidi says.
Discussing Mortality No Longer Taboo
She thinks some of the reluctance to discuss death is generational, that older seniors simply avoid talking about it. She recalls an elderly aunt who simply said “well, that’s the way it goes,” when she learned of a grandson’s death. “I was shocked at her response,” Heidi remembers. “After all, he was her grandson.”
But she also thinks the overall reluctance to talk about the end of life and death is easing. One indication is the growth of “Death Cafes,” a movement that started in Europe but is catching on in the United States. As of January 2016, more than 2,750 of these sessions to discuss death had been held in this country. At these sessions, tea and cake are served and a facilitator starts by asking a few questions to spark discussion about the end of life.
Another indication of shifting attitudes is the popularity of books like Atul Gawande’s Being Mortal: Medicine and What Matters in the End, and David Solie’s How to Say it to Seniors: Closing the Communication Gap with Our Elders. Gawande and Solie are two contemporary authors who have tackled end of life issues.
Five Wishes, a document that combines a living will and advance directives with other end of life considerations, also deserves credit for changing attitudes and stimulating the growing willingness to discuss these issues. According to the website for the Aging With Dignity organization, which originated Five Wishes, “we have touched more than 25 million people and their families.” The organization works with 40,000 other organizations and the Five Wishes document has been translated into 28 languages.
The organization’s founder, James Towey drew up the Five Wishes document in 1997 and circulated it with the help of the Robert Wood Johnson Foundation and other groups. The Five Wishes are straightforward and are intended to help people plan for and receive the care they want if they become seriously ill. The document, which is considered legal in 42 states and the District of Columbia, has ample room for answers, and can be used by people of all ages.
The Five Wishes are:
- The Person I Want to Make Care Decisions for Me When I Can’t
- The Kind of Medical Treatment I Want and Don’t Want
- How Comfortable I Want to Be
- How I Want People to Treat Me
- What I Want My Loved Ones to Know
Not surprisingly, the Five Wishes themselves can serve as a valuable starting point for the end of life discussion so many families avoid.
Whether inspired by Death Cafe discussions, the writings of Solie and Gawande, the Five Wishes, or family members, discussions of death and related end of life issues are healthy, and something a family needs to do, Heidi believes. “Avoiding the conversation about the last chapter of life is a mistake,” she believes.
“Why do we do so much planning when it comes to the positive things in life, like graduations, weddings, and the birth of a child, even financial planning for retirement, then ignore death, which we see as a negative,” she wonders. “Some people buy a burial plot and draw up a will and think they have dealt with it but that’s not enough. We should put as much effort as we do in planning for positive events into preparing for death, which is also a significant life milestone.”