At the End

Catherine Horiuchi

IT STARTED INNOCENTLY. A doctor’s visit. A blood test. Results. Admit to hospital for “a couple days of observation” that instead cascaded, over six days, into my husband’s death at age 71. His death certificate states “etiology unknown.” While doctors suspected prescribed medication, we will never know just what caused his liver to fail.

Throughout, the situation had been confusing. Clarity regarding treatment options—and the likely outcome from procedures—was in short supply. He and I and doctors made medical decisions in the face of this uncertainty and without regard to costs. Crucially useful was my husband’s advance medical directive, completed a decade earlier when we updated our wills. I kept this at hand to reference as we made decisions. Language in directives is ambiguous and can be a poor fit to clinical decisions. Yet the directive was essential to working through differences of opinion among family members and to obtaining, in the final hours, a frank assessment from attending doctors and clinicians.

Amid many roundtrips at all hours between home, hospital, airport and hotels, I lost my identification twice. Once, I was paying for parking at the hospital lot kiosk. I cancelled my credit and debit cards before getting my wallet back two days later, less the cash. “Nobody turns wallets in, ever,” said the hospital security guard as he handed it back.

After that, I only carried keys, phone, my driver’s license and my backup credit card, and lost the license and credit card a couple of days later. It would be two months before I could replace my driver’s license with a new picture ID. In the interim, I carried my passport card and a printout listing my appointment with the DMV to replace my driver’s license.

At the end, I was bedside with our three teenagers. Afterward, before leaving for home, our youngest asked me to promise two things: “Take care of yourself” and “Don’t spend money on stupid stuff we don’t need.”

Fifteen minutes after the children left with a friend, the head nurse gave me a handout on death and asked where to send the mortal remains. Our careful and frugal life together was over. No more deciding together. No more sharing costs of anything. No more splitting the bill for family nights out. Numerous expenditures—many I had never contemplated—were unbudgeted for this calendar year. The proverbial meter was running, and I didn’t yet know where I was going.

Here are just five of the lessons I learned during this grueling period:

  1. Plan for what’s expected and expect the unplanned.
  2. Photocopy your driver’s license or state ID, and file it with your emergency materials. Also store a photo of it on your phone. In a pinch, your old, expired license is better than none at all.
  3. Spend final hours with your loved one focusing on each other and making one another as comfortable as possible. Avoid spending those hours looking for advance directives and talking about funeral plans. Put your planning documents in an obvious place that can’t be forgotten. What didn’t get planned in advance will eventually get done anyway.
  4. Accommodate immediate and extended family, so all can have as much time together as possible. Minimize quarrelling among yourselves about medical care and what will happen next. Keep a copy of the advance directive on your person.
  5. Don’t expect an advance medical directive to substitute for having a patient advocate present when making key decisions.

Catherine Horiuchi is an associate professor in the University of San Francisco’s School of Management, where she teaches graduate courses in public policy, public finance and government technology. This is the first article in a series. The next parts: The AftermathWhen It Rains, Muddling Through, Missing a Step and From Two to One.

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