An End-of-Life Conversation at 29


by Janet Simpson Benvenuti

2020 was supposed to be a banner year. My son was getting married at the end of May; the logistics of planning a destination wedding in Sedona, Arizona had been an all-consuming adventure for his fiance and their friends. As the mother of the groom, I had little to do, and yet he found ways for just the two of us to share this journey together. First, came a call 18 months ago and two trips in secret to our favorite jewelers to pick out a diamond so he could surprise her with a proposal and an engagement party at their favorite restaurant. More recently, he arranged a meetup to select material for the custom suit in which he’ll be married. By February, the planning was finished, with celebrations ahead in three states with his large extended family.

Then, the coronavirus struck. Plans were cancelled, celebrations postponed and, one Sunday, I found myself having a conversation with him that would have been unthinkable a few months ago.

The topic? My end-of-life game plan.

Five years ago, my husband and I updated our estate plan and, more recently, we shifted the responsibilities for handling our finances and health care decisions, if we both are incapacitated, to our two children. It seemed the right time to make the change; they’re in their twenties and we’re about 25-35 years away from our statistical expiration dates.

As viral infections spread, I allowed myself to consider what would happen if both my husband and I were ill, intubated in the hospital, unable to communicate our healthcare wishes or pay our bills. I then did three things:

1. Find Health Care Proxy, HIPAA Authorization and Durable Power of Attorney. I printed copies of our medical and financial powers of attorney and inserted them into a plastic sleeve, like one finds at Staples. I transferred copies of those documents onto a flash drive.
2. Provide Explicit Guidance for the Healthcare Agent and Financial Power of Attorney. I wrote a one page cover letter with specific instructions on how to manage our healthcare issues that included the cell numbers of physicians in the family and contacts at the hospital where we’ll likely be situated. I included how to pay our bills along with the names and contact information for our financial advisor, tax accountant and attorney, and the password to access my computer.
3. Cue up Relevant Advisors to Handle the Situation. I called our financial advisor (who knows all about our financial matters) and gave him our children’s emails and cell information along with specific instructions (in writing) to proactively reach out to them should we become ill.

Then, I invited my son and his fiance over for dinner. Over dessert and coffee, I pulled out a manila file folder. “Although this is unlikely to happen,” I began, I handed him the folder that contained the instructions, our healthy care proxies, HIPAA authorization forms and financial powers of attorney. His fiance sat silently at the table as I talked, later acknowledging that she recently had had a similar conversation with her parents.

After dinner, as my son prepared to leave, manila folder and flash drive in hand, we stood alone in the garage waiting for his dog to run her final laps before their car ride home. “Thanks for having our backs,” I said quietly, out of earshot of his father and fiance. “No problem,” he replied. I nodded and continued, “By the way, there’s a second plastic sleeve in that folder that holds your healthcare proxy. If you go to the hospital, just grab it. I’m your healthcare agent and the admitting physicians will want to see that. I’ll handle your bills, too. Don’t worry.” He nodded silently and reached out to gently rub my back.

The unthinkable is not that his father or I might become infected with the coronavirus and die, although we have no known underlying health conditions that put us at risk. The unthinkable is that he might, too, and in a year that was supposed to be one of joy and a new beginning, this was the last conversation I expected to be having with him.

We’re in the midst of a pandemic, not the flu. Don’t live in denial. Play the “what if” scenarios and tell your family what they need to know.

Since that evening, I’ve slept well, knowing that I’ve done all I can to anticipate the future, whatever may happen. My family and I can now just focus on helping others navigate this challenging time and get back to planning a wedding.

Keep well.

Circle of Life Partners, LLC. All rights reserved.

BOOK REVIEW: The Heart of the Hereafter, Love Stories from the End of Life

by Janet Simpson Benvenuti

The Heart of the HereafterEach month I read dozens of books, articles and research reports about aging and healthcare, looking for tidbits of information that I can share with you, knowledge that will make your family life easier, healthier, more joyful. After 25 years in healthcare, it’s rare that I find a book that makes me pause and reconsider how we care for the dying. The Heart of the Hereafter, Love Stories from the End of Life, is one of those books.

Author Marcia Brennan, Ph.D., is a professor of Art History and Religious Studies at Rice University in Houston, Texas. She also is the Artist In Residence in palliative medicine at the renowned M.D. Anderson Cancer Center. Curious about her role, I anticipated that her book would describe anecdotally how art therapy can help a patient cope with their cancer diagnosis. Far from that, Dr. Brennan becomes our guide to life’s greatest transition – death – using art as the language to describe what words cannot.

Dr. Brennan briefly provides context about historical guides to the art of dying called the ars morendi, small printed books widely used in the 14th century to help people understand the dying process and acknowledge the moment between living and death, when an individual is suspended between worlds. “Sometimes when I visit people at the end of life,” she writes, “I get the sense that they are inhabiting multiple worlds at once…their physical appearance changes and they become extremely beautiful.” This state of grace, a moment of sustained peace and comfort, a convergence of the physical and spiritual, is captured through her stories about 10 patients, including a child, who are dying.

In “The Heart,” Dr. Brennan brilliantly demonstrates how she creates a complete summation of each patient’s life in a single poem, words that are transformed by a visual artist into a charcoal drawing. She places their reflection in the context of her deep knowledge about religion and art, centering each story around the different types of love that influence and transform a person’s life. The result is breathtaking, especially as each patient acknowledges the accuracy of her work, comforted by her understanding and a sense of accompaniment when facing the transition between worlds.

The news today is full of stories about how to navigate the last years of life. Housing choices, hospice care, insurance coverage and legal plans are mundane but necessary decisions that distract families from what truly matters: being present with loved ones in the last months and moments of their lives. Dr. Brennan, a stranger to the patients she meets, reminds us that our role is to listen and affirm, to remain open to whatever arises, to acknowledge that “the end of life is all about life itself and the many different types of love that we experience as human beings.” This book is a gift to us, one to re-read each time someone in your life approaches the end of their own.

HIGHLY RECOMMENDED. Click this link to purchase The Heart of the Hereafter: Love Stories from the End of Life

c2015 Circle of Life Partners, LLC. All rights reserved.