The talk you have to have

The talk you have to have

It's not easy, but every family should have an end-of-life conversation.

By Carrie Madren

When Ellis Waller of Seattle looks back at the passing of her mother five years ago and her father in 2013, she remembers their deaths as peaceful and beautiful. Waller, a gerontologist, works with continuing care retirement facilities to help families have end-of-life discussions. When her parents were in their 70s, Waller initiated end-of-life talks that included completing advance directives together.

When her father died, Waller had been the surrogate decision maker. "But because we had had these conversations, it was much easier to stop the antibiotics, bring him home and have him pass away in hospice," Waller says. "He was alert and said ‘I don't want any extraordinary means – it's time to go.'"

End-of-life conversations – advance planning for older individuals' inevitable decline in health and death – are never easy. However, by making their preferences and values known, seniors can help their families and themselves ease the transition to their heavenly life.

"People tend to prepare (for) the next stage of life. We give a lot of consideration to who we marry and choose our college carefully, but tend to overlook preparation for old age," says Kate Kunk, a caregiver options counselor for Indiana's Area 8 Agency on Aging. "Society's mindset is that ‘if we don't think about it, it won't happen to us.'"

That denial affects us in real ways. Less than 30 percent of people have discussed what they want when it comes to end-of-life medical care. However, more than 90 percent believe it is important that loved ones understand end-of-life preferences, according to The Conversation Project, an organization that provides resources for end-of-life discussions.

In addition, though 70 percent of individuals report that they prefer to die at home, 70 percent actually die in a hospital, nursing home or long-term-care facility, according to a report by the Centers for Disease Control. Of the 82 percent of people who say it is important to put their wishes in writing, only 23 percent have actually done it, according to a 2012 survey by the California HealthCare Foundation.

"Talking about aging can be very healthy," says the Rev. Paul Graves of Sandpoint, Idaho. He chairs the Council on Older Adult Ministries for the Pacific Northwest Conference and founded Elder Advocates Inc., a nonprofit ministry that consults and leads workshops on end-of-life conversations. "It's important to plan in the light of day rather than in the heat of the moment."

That is why the first seminar series in 2012 at St. Mark's United Methodist Church, Carmel, Ind., featured hospital directors, chaplains and geriatric specialists who spoke on palliative care, hospice, end-of-life directives, grief and more. A second series included talks on elderly drivers, knowing when to seek assisted living and articulating end-of-life wishes. Recent forums featured funeral planning and preparing instructions for end-of-life care.

"Our goal was to ‘demystify,' under less-stressful conditions, the conversations pastors typically have with a bereaved family when planning a funeral," says the Rev. Suzanna Ross Helms. Bringing the message to her congregation struck a personal note: Her mother's recent illness and passing in August 2013 and her uncle's current dementia reveal two completely different paths.

"(My mother) had – when she was healthy and active – written her obituary, given us specific end-of-life care instructions and filled out her church's funeral-planning form," Helms says. In addition to having her wishes on file at home and church, Helms' mother left a checking account with enough money to pay for her cremation, memorial service and other expenses.

"In her last week, when it became clear that she was not going to recover, she elected to discontinue all medication and ‘settled in' for her last hours," Helms remembers. "Because of her open conversation with us, (my sister and I) were able to support her decisions and kept vigil with her."

In contrast, Helms' uncle is a widower with no medical directive, no established power of attorney or access to financial resources, and no written will. "Sadly, he is experiencing worsening dementia, which makes things even more complicated," Helms says.

End-of-life conversations can stir up a range of emotions – from relief to fear.

Seniors often fear a decline in health and possible loss of independence. Adult children sometimes feel unnecessary guilt when they say they will never put Mother in a nursing home. "They can't guarantee that, because life circumstances oftentimes won't allow a person to stay in his or her home," Graves says. Denial that loved ones are approaching death also causes many families to procrastinate talking about important issues.

However, the earlier these conversations take place, the better. Talking around the kitchen table – instead of in a hospital room – offers an easier setting for individuals to share their wishes clearly and without pressure.

One place to start is The Conversation Project's starter kit, a free PDF guide with questionnaire-like questions, tips and suggestions. "A person can take that into a family meeting or around the dinner table, and say, ‘I've been doing some thinking about this, and I want us to think about it together' – something as simple and direct as that," Graves says.

By discussing practical end-of-life issues at first – living wills, power of attorney, do-not-resuscitate wishes and other practicalities – the emotional issues can arise naturally.

Preparing and finalizing a living will, Kunk says, "should happen early in life because life is uncertain." Advance directives need not be black and white – leave room for the surrogate decision maker to make informed choices based on the senior's wishes, Waller adds.

For another approach, Kunk recommends talking one-on-one in a low-key setting, saying, "Mom, tell me what's been going on with you."

It is important to give loved ones the opportunity to say what they think they need and to make as many decisions as possible, Kunk continues. Reassure the loved one that you are acting out of concern and want to make sure he or she has the most opportunities to make decisions.

Safety must be a conversation priority, advises Kunk, and driving should be one of the first concerns. Many driving agencies will assess elderly drivers, "so you don't have to be the bad guy, and that takes pressure off of the family," Kunk says.

Sometimes spiritual topics come up, says Graves. If someone is afraid of dying or is unsure of their salvation, they – and perhaps another family member – can meet with a pastor or spiritual lay leader. "Even the people who are the most outwardly religious may deal with unresolved fears about death and eternal life," Graves says.

Extra support can also come from church. United Methodists "are people of prayer, and I can't emphasize enough the importance of prayer for caregivers, discernment, patience, mercy, kindness (and) knowledge of resources," says Kunk.

Waller, reflecting on her parents' deaths, knows clear conversations made them easier. "Because we did these advance directives, we all feel that we were fortunate to experience death in a very beautiful way," she says. "When someone has had a long life, death is just a part of the circle."

Carrie Madren is a freelance writer based in Great Falls, Va.

To learn more

At the Edge of Life by the Rev. Richard L. Morgan is scheduled for publication by The Upper Room in September. It will help seniors and those who love them initiate and engage in conversations preparing for the end of life.

The Conversation Project, theconversationproject.org.