Living with Curiosity

Deborah “Deb” Whitman has spent more than 25 years shaping public policy on aging, first on Capitol Hill and now as Chief Public Policy Officer at AARP.

End Well Executive Director Tracy Wheeler spoke with Deb about her book, The Second Fifty: Answers to the Seven Big Questions of Midlife and Beyond, what surprised her most about death and dying, and how we can face the end of life with greater honesty, curiosity, and courage.

Why Write The Second Fifty?

Tracy Wheeler: I loved The Second Fifty. So many books feel padded, but yours brings together the difficult realities and the hopeful possibilities in a way that is genuinely useful.

Deb Whitman: Thank you. I wanted the book to be useful by combining research and data with voices people could connect with.

Tracy: What struck me most was your honesty. You have worked in aging policy for more than 25 years, yet when you turned 50, you still had major questions about your own future.

Deb: Exactly.

Even after decades working on Social Security, Medicare, and caregiving, I realized I still had uncertainties about my own life.

I thought that if I had these questions, many other people probably did too.

That realization made me want to combine personal reflection with evidence so readers would feel invited into the conversation rather than lectured.

The Difficult Realities of Caregiving

Tracy: You do not shy away from the hard facts.

Deb: The United States spends more on healthcare near the end of life than almost any other country, yet people still report poor quality, poor communication, and significant financial distress for families.

By 2034, older adults will outnumber children in the United States for the first time. That shift will affect housing, healthcare, caregiving, and nearly every part of public life.

Nearly 40 million Americans provide unpaid care to adults over 50. That care is valued at more than $600 billion each year, but most caregivers receive no paid leave or training.

Many reduce their working hours or leave the workforce entirely, which also reduces their future retirement savings.

We often think of caregiving as an expression of love, and it is. But love does not pay the mortgage.

Without meaningful support, caregivers and the larger system both suffer.

Grief and Bereavement

Tracy: You also write about grief.

Deb: The average bereavement leave in the United States is only three days following the death of a spouse, parent, or child.

That is barely enough time to plan a funeral, let alone begin grieving.

Grief does not disappear when someone returns to work. It affects health, concentration, and even longevity.

When workplaces ignore grief, they deepen the harm.

Tracy: So caregiving and grief are central issues, rather than side stories.

Deb: Exactly.

When we fail to treat them as public responsibilities, we create more burnout and inequality.

Investments in paid leave, workplace flexibility, and financial support produce healthier families, a stronger workforce, and a culture in which aging and dying are met with care rather than silence.

What the Data Tells Us About Dying

Tracy: Which of your assumptions about dying were challenged while writing the book?

Deb: Like many people, I hoped for a quick and painless death. But only about 14 percent of us will experience that.

Most of us will face something different.

I also believed everyone should die at home. But dying at home can be extremely difficult for families, and many homes are not equipped for it.

Home may be right for some people without being right for everyone.

Writing this chapter also prompted conversations with my parents.

When I first asked my mother about her funeral, she said, “Whatever you and your brother want.”

When I continued asking, she relaxed and explained that she wanted two funerals: one near the family burial plot and another locally so her friends would not have to travel.

That clarity brought relief to both of us.

Beyond Advance Directives

Tracy: One of your biggest surprises involved advance directives.

Deb: Yes.

I began with two assumptions: everyone wanted to die at home, and everyone needed an advance directive.

I was completely prepared to write those conclusions until I spoke with Diane Meier and had to reconsider them.

She had recently published research showing that advance directives are often ineffective without a healthcare proxy or a meaningful conversation with someone who understands your wishes.

They can also create unintended consequences.

For example, some people indicated that they never wanted to be placed on a ventilator. Then COVID arrived, and many patients survived after receiving short-term ventilator support.

A blanket refusal could have eliminated that possibility.

The larger lesson is that our preferences may change over time.

My father always said he would never enter a nursing home. When his health changed, he reconsidered.

The most important step is choosing someone you trust to speak for you when you cannot. That person can evaluate the circumstances in real time rather than relying only on instructions written years earlier.

Palliative Care Remains Misunderstood

Tracy: You write about the lack of awareness surrounding palliative care.

Deb: More than half of family caregivers have never heard of palliative care.

Many believe it means someone is about to die. In reality, palliative care is about improving quality of life.

Yet only 17 percent of oncologists refer patients to palliative care. That is unacceptable.

Medicare rules also create problems by forcing people into difficult either-or choices between continuing treatment and entering hospice.

Practitioners need to understand palliative care as an integral part of medicine rather than an optional addition.

Loneliness and Healthy Aging

Tracy: You also emphasize the importance of loneliness and social connection.

Deb: Loneliness can be as harmful to health as smoking 15 cigarettes a day. That shocked me.

Social connection is about more than marital status or the number of people around you. It is about whether you feel connected.

A conversation with a cashier, a wave from a porch, or a phone call can matter.

My father used to spend an hour at the post office talking with everyone he encountered.

When we close post offices, we may save money, but we also remove places where community happens.

Do People Want to Talk About Death?

Tracy: Is death truly taboo, or are people more willing to discuss it than we assume?

Deb: AARP surveys revealed something interesting: fear of death and fear of talking about death tend to decline as people age.

Older adults have attended funerals and experienced loss. They often understand more deeply that time is precious.

Silence can also come from politeness.

My mother believed I did not want to discuss her death. I believed she did not want to discuss it.

Once we finally talked, the conversation felt freeing.

I also attended a mock death café for geriatric care workers, and people loved it.

Programs such as Death Over Dinner and card games with conversation prompts also create opportunities to discuss these subjects.

People are often hungry for permission to have these conversations.

Making Death Personal and Communal

Tracy: You visited New Zealand’s Coffin Club. What did you find there?

Deb: In Rotorua, I met a woman who founded the Kiwi Coffin Club.

People built and decorated their own coffins. Some painted landscapes from meaningful hikes. Others created tributes to Elvis.

It became part social club, part arts-and-crafts gathering, and part charitable organization.

Members also donated coffins to families who could not afford them.

There was joy in it.

We need more opportunities in the United States to make death personal, creative, and communal.

Signs of Cultural Change

Tracy: You end the book on a hopeful note.

Deb: Some workplaces are expanding bereavement leave. Some states are testing paid family leave programs that include elder care.

We are also seeing greater cultural openness.

Television shows are portraying the end of life with more nuance, and communities are beginning to speak more honestly about what matters most.

Tracy: Culture shapes policy, and policy shapes culture. It is a continuous loop.

Deb: Exactly.

Stories make data real.

Every time a family asks, “What does a good day look like?” “Who should speak for you if your health changes?” or “Where would you want to receive care?” they take a step toward a better system.

Tracy: We can name the difficult truths and still believe in our ability to change.

Deb: Aging, caregiving, and dying are universal experiences.

When we approach them with honesty, compassion, and thoughtful policy, we can transform something that feels overwhelming into something more humane, sustainable, and even beautiful.

About the Book

The Second Fifty: Answers to the Seven Big Questions of Midlife and Beyond is available now. All proceeds benefit the AARP Foundation.