Death Literacy: The New Life Skill

“My husband died unexpectedly,* and I don’t have the access code to his phone.”

This, or some variation of it, is posted on social media or stated (tearfully) several times a day all over the world. The variations are just the relationship (replace husband with mother, father, sister, brother, daughter, son, friend, etc.) When I read or hear this, I feel both profound compassion and tremendous frustration. The compassion comes from knowing how devastating it would be to lose access to all the photos, videos, and contacts at precisely the point they have become more precious than ever. The frustration comes from knowing this devastation is entirely avoidable. This devastation is avoidable for the same reason I asterisked “unexpectedly” in the quote above. 

At the end of life comes death. Nothing reduces or increases the mortality rate; it has and will remain at 100%. While 20% of deaths are “sudden,” none of them are “unexpected.” To avoid this devastation, insist that each of your family and friends set up the Legacy Contacts feature on their phones, do the same with yours (more on this later), and choose to become death literate.  

Facing Death With Death Literacy

When I allowed my very private art journal about the saddest time in my life to be published as a book, The Hospice Doctor’s Widow: An Art Journal of Caregiving and Grief, I was thrust into the end-of-life space. From there, I have learned that we, as a society, have managed to make death and loss even more difficult by choosing to remain ignorant about the one certainty that will profoundly affect every one of us. 

I have come to see that true peace and balance in life come only when we’ve made space to contemplate our own death and the inevitable loss of those we love. This kind of reflection isn’t dark, it’s deep, and it makes us more present, more connected. It’s death literacy: the personal and practical understanding we need to navigate mortality with clarity, courage, and care. And it includes four subtopics: family caregiving, end-of-life preparation, after-loss administration, and grief. 

Family Caregiving

Family caregiving (a.k.a uncompensated caregiving) is helping an adult neighbor, friend, or family member with personal needs, chores, finances, healthcare access, etc. There are 53 million family caregivers in the United States, according to the National Alliance for Caregiving (NAC) and AARP Caregiving in the U.S. 2020 report. Most often, it starts out with a task here and there. Then the amount of care and time increases with the needs, and, eventually, it becomes the experience of caring for someone through decline, dependency, and dying.  

Bottom Line: You are, have been, will be, and/or will need caregiving. Caregiving is both the most difficult and most fulfilling job you will ever be called upon to do. 

End-of-Life Preparation

End-of-life preparation is so much more than a will. It is discussing, planning, and documenting emotional, legal, medical, and logistical preferences well in advance of illness or injury. Over 90% of adult Americans agree that end-of-life preparation is important yet only 32% have done it (The Conversation Project). 

What would you say if you were diagnosed with a disease, with no hope of improvement and it was hard to function in day-to-day activities? Would you want all treatment stopped so you could die, or have everything done to extend your life? Pew Research Center’s 2013 report, Views on End-of-Life Medical Treatments, revealed that Americans were split: 46%/46%, with 9% saying they either didn’t know what they’d do or it would depend on circumstances.  

My late husband, a palliative care and hospice physician, would tell his patients the story of his own parents. His father wanted only to be kept comfortable, while his mother wanted every life-extending measure. He would explain that they were both right—because the right answer is your answer. Fact is, the less death is discussed and prepared for, the less likely individuals are to have their own end-of-life preferences and wishes met. 

Bottom Line: Talking about it won’t make it happen, but not talking about it will make it harder on you and your loved ones.

After-Loss Administration

After-loss administration is managing the administrative, legal, and financial obligations following a death. According to the 2025 Grief Tax: Empathy’s Annual Research Report, surviving family and estate executors are spending an average of 20 months on administrative tasks following a death. I have done this for every one of my immediate family members, and I can tell you, it is no small task. And with each seemingly innocuous task may come an onslaught of emotional pain. 

My late husband and I very thoroughly prepared for his death and my survivorship. We overlooked, however, putting two of the utilities in my name. After he died, I called ATT to have him removed from the account. When I told the representative my husband’s name and number needed to be removed because he had died, the response was, “I am going to need to talk with the account holder in order to do that.” 

“But I just told you, he’s dead.” I responded. 

This circular conversation went on through numerous reps and supervisors and probably totaled over three hours of phone calls. The same thing happened with the cable company.

Bottom Line: The more end-of-life preparation that’s done, the less after-loss administration there will be.

Grief 

Grief is the emotional, physical, mental, and spiritual upheaval that follows loss. Feelings of abandonment, anger, anguish, anxiety, disbelief, confusion, emptiness, fear, guilt, hopelessness, insecurity, irritability, isolation, loneliness, numbness, overwhelm, regret, shame, shock, yearning—along with a host of physical symptoms—are all perfectly natural elements of grief. Time doesn’t heal; it helps. Grievers don’t “get over it,” or “get back to our old selves again.” We learn to carry our grief, and the process is never linear. 

Bottom Line: The fact that you are unsure what to do or say when someone is grieving is eroding your own inner peace as well as the relationship.

Overall, being prepared and literate about the end of life doesn’t make death and loss easy. It just makes the reality easier.

How to Become More Death Literate

There are numerous free resources to get you started on the path to death literacy on the “Resources” page of my website: jenniferaobrien.com. This includes a download called At Peace Tool Kit: A Guide to Being at Peace with End of Life, which includes setting up Legacy Contacts on your phone. 

Remember: Becoming death literate doesn’t diminish life. It enhances it.

In her 35+ years in healthcare, Jennifer A. O’Brien, MSOD, has been a practice management consultant to physicians, served as CEO for two large medical practices, and held several administrative leadership positions. The art journal she created during her late husband’s 22-month illness was published as The Hospice Doctor’s Widow and won four awards, including a Nautilus. Her second book is Care Boss: Leadership Strategies & Resources for Family Caregivers. Jennifer earned a bachelor’s degree from Boston University and a master’s in the science of organizational development from Loyola University – Chicago. Jennifer goes between Little Rock, Arkansas, and Santa Fe, New Mexico.