Talking About Death: The First Step to Dying Well

Preparing for a Good End (Part 2)

(Vera Prokhorova/Shutterstock)

Follow the "Preparing for a Good End" series here.

In this series, we'll examine ways of making meaning in the face of death, offering tools founded in traditional wisdom and scientific evidence to help our readers live well right to the very end. 

"Overtreatment and unresolved existential issues is what causes suffering at the end of life," palliative care expert Rebecca Gagne-Henderson told The Epoch Times.

Up to 90 percent of patients with serious, life-limiting illnesses, such as cancer, COPD, and chronic kidney disease, report never discussing their end-of-life wishes with their physicians. Research shows that patients want these discussions but most never initiate the talk—nor do their doctors, whose training focuses on saving lives, not helping people die well.

Aggressive medical treatment is appropriate when a condition is treatable and a patient wishes to continue curative therapies. But for end-of-life patients—young or old—whose condition will no longer improve, it worsens their final days.

The Problem With Avoiding Death

Dr. Gagne-Henderson tells one such story in her blog, The Palliative Provocateur.

"Sarah" was at least 90 years old. Dementia kept her bed-bound, nonverbal, and fed through a gastric tube in a nursing home. She endured three trips to the emergency room (ER) over three months, twice because of infections and bedsores. Both times, the hospital admitted her to the intensive care unit (ICU), where they intubated her for several weeks. During her third visit to ER with a broken hip from nurses' simply turning her in bed, the physician realized it was time for a hospice referral.

In a long line of health care providers, Dr. Gagne-Henderson may have been the first to talk to Sarah's husband about what Sarah would want and how this kind of overtreatment increases suffering.

The frank discussion motivated him to stop the ER trips and let Sarah die naturally.

Related Stories

Sheltered at Home, Families Broach End-of-Life Planning

4/10/2020

To Die Well, We Must Talk About Death Before the End of Life

2/17/2020

Dr. Gagne-Henderson contends that early, honest, and ongoing conversations about life and death are essential for preventing both issues.

"Often, rather than doing things for the patient, we are doing things to the patient," she wrote.

The Power of Frank Discussions

Across more than 100 studies, research shows that loved ones and health care providers are more likely to respect a patient's end-of-life wishes when clear talks and end-of-life documents are in place.

These open discussions reduce overtreatment and distressing readmissions to the hospital for patients whose condition won't improve. They also increase hospice admissions and earlier referrals to palliative care services—which studies show helps patients with serious illnesses live better for longer, extending time with loved ones.

In addition, open discussions give voice to deeply personal feelings and hopes often unrecognized until the talks begin. This reflection helps resolve inner turmoil, addressing the existential issues that Dr. Gagne-Henderson said profoundly affect whether one dies gracefully.

Open Talks Help Loved Ones Grieve

Having time to process the dying journey is essential for a family to find peace and accept the reality of death.

In multiple studies, loved ones report that early, open talks helped them make the most of their limited time and pursue palliative care services sooner.

Families also state that talking before a patient becomes too ill is crucial, allowing family members to prepare for their death and maintain realistic hope.

Avoiding the talk increases everyone's anxieties and hinders loved ones' ability to move through the grieving process. It also contributes to false hopes of a cure, robbing patients of time to nurture relationships and complete significant tasks before dying.

Talking Relieves Family of Distressing Decisions

Dodging open talks about death also increases confusion and decision-making stress for loved ones and health care providers, according to Lisa Pahl, a hospice and ER social worker since 2006.

"Providers and individuals will do more treatment over less because they're afraid of not doing enough," Ms. Pahl told The Epoch Times.

"It usually requires multiple conversations at different times until a loved one has heard the patient's wishes. They need to hear it, and they need to feel confident. Otherwise, everyone's going to say: ‘We're not sure. Do it. Do it all.'"

"Doing it all" is appropriate when the benefits of life-saving treatment outweigh the risk, but this depends on the patient—his or her age, health status, stated wishes, and illness or trauma.

Ms. Pahl said it's her life's passion to help people prepare for a smoother death, and to define what they want in their final days. This passion led her and her business partner, Lori Locicero, to create a conversation tool called The Death Deck—a lighthearted set of cards to spur talks about death.

"What I see a lot of times in hospice is that family members haven't talked," she said.

And when families don't talk, they tend to fill in the blanks with what they would prefer without consulting their dying loved one.

Ms. Pahl's experience is confirmed by research. Family members who knew clearly what their dying loved one wanted reported less distress during the dying process.

"Conversations breed confidence," she said.

"Your family members will potentially face different moments where they're going to have to make decisions on your behalf, and that is really stressful. Really stressful.

"If you haven't had specific conversations about what decisions they would want you to make in different scenarios, then they cannot make decisions confidently."

4 Steps to Starting the Conversation

If you are facing your final days, or know someone who is, these steps can help you navigate a conversation about final wishes and important concerns.

1. Think About What Matters to You

Thinking about death as a normal part of life rather than an unexpected event is the first step toward discussing it.

"The first thing you need to do is determine what you're afraid of. And that's not just about the dying process. It's about what's going to happen to my loved ones. Who's going to take care of my house for my wife? These kinds of things can cause a lot of existential suffering," Dr. Gagne-Henderson said.

2. Just Do It

Starting the conversation is the hardest part.

"People always have things to say on the topic," Ms. Pahl says. "It's just getting them going."

Unsurprisingly, 90 percent of people say talking with family about end-of-life care is important, but only 27 percent start the conversation.

3. Talk Sooner Than Later

Start talking while you're healthy enough to do so. A review of cancer patients found that 79 percent were capable of discussing their end-of-life wishes when first admitted to the hospital. However, 40 percent lost that capacity before the talks began, leaving them in the hands of surrogate decision-makers—someone given medical power of attorney—who were significantly more likely to agree to aggressive treatment, contrary to what most of the patients wanted.

4. Use the Tools

Many helpful tools exist. Various card sets are available online, created by different palliative care experts, with studies validating their usefulness.

Starting your end-of-life paperwork and sharing it with your health care providers and loved ones is another valuable way to get talking. There are many free online tools that are easy to find and explain how to document detailed notes and instructions.

In the end, The Conversation Project, one such tool, offers solid advice: "Think about what matters to you. Plan your talk. Start talking. Keep talking."

Next: Advance directives are one practical step toward dying well.