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The Talk You Haven't Had

We’re all going to face end-of-life decisions eventually. Why not start talking about them now?

Facing Many Choices
Benefits of Conversation
Getting Started
A Good Ending

In years past, there were certain things people simply didn’t discuss in polite company: religion, politics, sex and money. Today, you might be hard-pressed to find an interesting dinner party where one or more of the big four doesn’t come up. But as liberated and unconstrained as American culture is, there’s still one topic that can silence even the liveliest conversation: death.

In an essay published in 1955, British anthropologist Geoffrey Gorer argued that death talk is just as taboo in the 21st century as sex talk was during the Victorian age. Indeed, it’s not uncommon today for people in the United States to pass away without having had even the briefest conversations with their loved ones about what they feel and believe about death, how they’d like their end-of-life days handled, or how they want their lives honored after they are gone. Many die without living wills, funeral arrangements or even the simplest of estate plans.

A 2006 survey by the California HealthCare Foundation, an independent philanthropy organization in Oakland, found that just over half of those surveyed (51 percent) have had any kind of end-of-life discussions. Of those “conversations,” nearly one-quarter (22 percent) were remarks made in passing.

But when we allow ourselves to fall silent for fear of offending friends or family members, we jeopardize everyone’s peace of mind. We make things more complicated for those who hope to care for and memorialize us. And we also miss a hidden gem of an opportunity to connect with those who will ultimately depend on us to carry out their final wishes — whether we’re clear about them or not.

Facing Many Choices
Medically speaking, in particular, it’s becoming more important than ever to talk about end-of-life choices, says Robert Buckman, MD, an oncologist at the Princess Margaret Hospital in Toronto and author of “I Don’t Know What to Say . . .” How to Help and Support Someone Who Is Dying (Key Porter Books, 2000). Changes in technology, medical protocol and cultural ethos have made it much easier for people to get exactly what they don’t want in their last few months: too much or too little care, and, at times, too much pain. Your grandfather’s directive to “just pull the plug” might seem pretty clear, but rarely are things so black and white in reality.

Where the terminally ill and their families were once sent home with painkillers and a timeline, modern families are now charged with negotiating at what point their loved ones would — if they could speak for themselves — end medical treatment. Often this is not a question of removing life support, but is instead a series of small decisions: trying a new treatment for only a week or forgoing a surgery that might only make your loved one more uncomfortable. For many families, the lines are blurry.

“Doctors don’t say, ‘There’s nothing that can be done,’” says Buckman. “Nowadays, there’s a team of doctors, and all of us have our own opinions about the best way to care for a patient. There are six or seven different options for the family to weigh. That’s why it’s vitally important that the family has a good sense of what that patient values and wants.”

Benefits of Conversation
One mother-daughter pair that’s conquered the taboo is Marjorie Morris and her daughter Virginia Morris, author of Talking About Death (Algonquin Books, 2004). When Virginia was researching her first book, How to Care for Aging Parents (Workman Publishing), in the mid-1990s, she interviewed a lot of families that regretted how they had handled their own parents’ deaths. They talked of “things unsaid,” the frustration of not knowing what their parents wanted, and the feeling that things could have been so much richer and more loving than they were.

Marjorie, 82, had talked in passing about her own death, but Virginia, 48, realized the two of them — despite being extremely close — hadn’t really discussed it. “I saw that we were headed down the same path,” Virginia recalls.

So she and her mom began a series of conversations about death — not just about Marjorie’s end-of-life care, but about philosophy, their beliefs and what they both love most about living. They talked over the phone and in person, sometimes for hours and sometimes for just a few moments. There were tears, but also a surprising amount of laughter.

Today, both take comfort in knowing that the greater clarity they have about each other’s end-of-life preferences and logistics will make those decisions easier when the time comes. Meanwhile, having deepened and improved their relationship in the present moment may mean even more.

Getting Started
The key to talking about death is to not think of it as one giant data-intake scenario, but rather as a collecting of thoughts and feelings over time. “Sharing your wishes isn’t an event, it’s a process,” says Buckman. 

And, like many things in life, timing is everything. Broach end-of-life conversations only when you’re both rested and not going to be interrupted. You might want to ease into the conversation under the guise of taking care of business. You can say something like, “Mom, I’m getting this advance directive settled for myself, and I’m just wondering if you have one?” Or you can refer to a death in the extended family: “Dad, what did you think about how Aunt Mabel’s children handled her care? What would you have wanted in that situation?” Topics might include funeral plans, where you want to die, organ donation, estate planning and end-of-life care. (See “A Good Ending,” below.)

Waiting until there’s a medical crisis or a terminal diagnosis makes the conversation that much tougher, says Virginia. “At those times, everybody wants to focus on living,” she explains. It’s much easier if you start these conversations on a theoretical note, long before the information may be needed. That way, when you actually need to make decisions about it, it won’t be such a blow to the senses.

Virginia is beginning to understand that intimately, now that her mom is in her 80s and suffering from chronic lung disease. “It is getting harder to talk about it,” she admits. “It’s like, ‘egads!’ It’s scary to think about. But I do think it is easier for us to open those doors because they’ve been open so many times before.”

Alyssa Ford is a Minneapolis-based writer and editor.

A Good Ending
Conversations about death may not always be comfortable, but they can increase our intimacy and mutual understanding with those we love most. Use these conversation starters (ideally, over the course of several months or years) to help your loved ones — and yourself — open up the lines of communication. Each time you have a conversation, make some notes and keep them in a safe place. When the time comes to carry out your loved ones’ wishes (or to ask someone to carry out yours) the knowledge you’ve accumulated will become the source of great comfort.
 
The EMOTIONAL:

• How do you feel when you think about dying or when you think about losing someone close to you?
• What, in your mind, is a good death? Who do think has died well, and why?
• Is there anything about death that frightens you — or comforts you?
• Whom would you like around you when you die?

The SPIRITUAL:

• What (if anything) do you think happens to the essential self, soul or spirit of a person when he or she dies?
• Do you think there is some kind of consciousness after death?
• What do you hope your end-of-life experience will be like?

The MEDICAL:

• In what setting would you prefer your life to end?
• Would you rather that we, your family, err on the side of giving you too much or too little care?
• Are there any medical treatments you definitely wouldn’t want or that you wouldn’t want after a certain amount of time?
• At what point would you want your family to stop focusing on life-prolonging treatments, and instead focus on giving you comfort? How do you feel about organ donation?

The LEGAL:

• Do you have a Health Care Power of Attorney (HCPA) or a healthcare proxy (a person you authorize to make healthcare decisions for you if you’re incapacitated)?
• Do you have a living will (a legal document that outlines your specific healthcare wishes in the event that you’re incapacitated or unable to give informed consent)?
• Have you updated your living will in the past five years? 

The FINANCIAL:

• Do you have a will for your estate planning?
• Who is your lawyer/will executor?
• Have you prepaid your funeral or made any prior arrangements?
• Who would you like to have cover your healthcare and memorial costs?
• Does your executor or another trusted person know where are all your important papers, passwords and bank statements are kept?

The MEMORIAL:

• How would you like people to remember you, and how would you like them to honor your life and passing?
• Do you have any ideas about the type of memorial service you’d like — or about what you definitely wouldn’t want? Whom would you like to be at your service, and who, if anyone, would you like to have speak or officiate?
• What arrangements would you like made for your body? Whom would you like to have make those arrangements for you when the time comes?