CHAPTER THREE
Appreciating the Benefits of Family Collaboration
My first reaction when I heard about the rapid decline in my parents’ physical state was this strange sense of panic. I’m a bigtime corporate lawyer, for God’s sake, and I don’t panic for a living, but there I was. Mom and Dad refused to leave California, and my practice is in Michigan. Whom can I trust to be my eyes and ears out there? And what can I count on from my unemployed brother? And do I really expect to build a consensus, a coherent plan of action, with my drama-queen sister?
God, I wish we’d talked about this stuff when things were normal!
—Denise, focus group participant
In the hundreds of interviews I conducted, I heard a number of tales that mirrored my own experiences as well as those of Jon, Kate, and Sara. While each narrative contained its own unique mix of details, most of my storytellers ended with the same conclusion: “I’ll never put my kids through what just happened to me!”
Yet they most likely will, just as the generations before them did, because the prospect of talking about dying and role reversal has a way of freezing even the most resolute person.
I might have followed in their footsteps except for two catalysts that jump-started my wife, Pam, and me into action. The first was the Terri Schiavo saga; the second was a nearly “lights-out” experience on a sailboat.
The Destruction of a Family
In February 1990, a woman named Terri Schiavo suddenly collapsed while at home, and oxygen was cut off from her brain for several minutes. The result was severe brain damage. Although she could breathe and maintain a heartbeat on her own, she needed a feeding tube connected to her stomach to keep her alive.
The story of her next 15 years had a painful, ultimately destructive impact on her family, but it also created profound ethical, philosophical, and emotional implications for the entire country, including my wife and me. In fact, it was the springboard that set us on a journey that would culminate in our developing the concept of the Other Talk.
While the Terri Schiavo case eventually spiraled into a battle royal between right-to-die and right-to-life partisans, each egged on by self-serving politicians, the crux of the matter boiled down to the question, What did Terri want done at the end of her life?
According to her husband, Michael Schiavo, Terri would not have wanted to be kept alive by artificial means. He claimed she had told him, “If I ever have to be a burden to anybody, I don’t want to live like that.”
“My aim is to carry out Terri’s wishes,” Michael told a reporter two years into the protracted court proceedings. “If Terri ever knew that I had somebody taking care of her bodily functions, she’d kill us all in a heartbeat. She’d be so angry!”
Terri’s parents, Bob and Mary Schindler, passionately called into question Michael’s assertions. They maintained that it would be totally out of character for Terri to take such a stance because she was a devout Roman Catholic who believed in the sanctity of life.
Unfortunately, there was nothing in writing to back up either side’s position. Worse yet, Terri was ultimately reduced to a pawn that was fought over by the two warring factions. Her feeding tube was disconnected for three days in April 2001 before a court reversed the order, and again for six days in January 2003, until another legal challenge put it back in.
On March 18, 2005, her feeding tube was removed one more time. She died at a hospice facility in central Florida on March 31.
While none of us will ever know what Terri wanted done at the end of her life, it’s safe to say that her on-again, off-again existence, with its corollary of a highly toxic family dynamic, is not what she or anyone else would wish for.
A Catalyst for the Other Talk
Terri’s plight and the tearing apart of her family affected millions of people from around the world in a variety of ways. And it led Pam and me to sit down with our 34-year-old daughter, Dakota, a Montessori teacher, and her 36-year-old husband, Fernando, a manager of Internet operations, to talk about the implications of the Schiavo case for our family.
Initially, the conversation revolved around the chaos and heartbreak that were generated by the tug-of-war between Terri’s husband and her parents. But it would evolve into a deeper discussion of what we as a group could do to avoid the train wreck that had engulfed Terri and her family.
As I discovered in researching the Schiavo case, two legal documents serve that exact purpose. Taken together, the durable power of attorney for healthcare and the healthcare proxy allow individuals to appoint someone to make healthcare decisions on their behalf if they are incapacitated by a debilitating illness or a serious injury. The four of us agreed that these would be important documents to have—for Pam and me, if one of us were suddenly stricken as Terri was, and for Dakota and Fernando, if Pam and I reach the point that we are unable physically or mentally to deal with healthcare decisions.
Then the discussion turned to the key issue of the Schiavo case: What did Terri want done at the end of her life? Because there were no written instructions from her, Terri’s parents and husband spent years fighting over diametrically opposed interpretations of what Terri might have wanted.
As I dug deeper into the advance-directive world, I discovered that there exists a legal document called a living will that provides instructions on the course of treatment that healthcare providers, caregivers, and healthcare proxy designees must follow in the event that an individual is unable to make and communicate healthcare decisions.
Ever the teacher, Dakota suggested that, as a learning exercise, we each think about, and then write down, how Pam and I might compose our own personal living wills.
The next week, as the four of us began to share our opinions on the content of the two living wills, we were surprised to discover a variety of interpretations of what Pam or I would want to happen.
Fernando assumed that I would want to fight until my last dying breath and that Pam would want things ended if she were put on a feeding tube for more than a week. Dakota followed the route of keeping us both going by artificial means, in case a cure was somehow discovered. Pam and I both guessed wrong on the other’s wishes, primarily because we had never had nor wanted to have this conversation. We all agreed that we would meet again after Pam and I returned from an upcoming vacation to Italy, to work out more precise interpretations and legal descriptions of our wishes at the end of our lives.
Little did I know that I was headed for an up-close-and-personal interaction with the price of leisurely postponement and procrastination.
My Call to Action
The trip was an eight-day bike tour through the lush and hilly countryside of Tuscany. At the end of the cycling excursion, Pam and I headed off for some R&R in Cinque Terre, a collection of wonderfully picturesque villages perched on hills overlooking the Mediterranean Sea. No cars were allowed, so the only way to travel was on foot, or by ferry or train. Or to commission a 45-foot sailboat, which sounded like great fun, and it would certainly be safe enough since the vessel came with a skipper and a crew. We chose the sailboat.
The boat was indeed spectacular. The captain and his mates had spent almost a year restoring and refinishing the teak mast, flooring, and a boom that was almost 20 feet long. (More about that boom in a moment.)
When we left the dock, the skipper kept the sails furled and instead used the motor to get from town to town, giving us a running commentary about the beautifully quaint homes that clung to the sides of the cliffs overlooking the sea.
After an hour of this, I started pestering the crew to put up the sails, turn off the engine, and head out into the Mediterranean. They eventually acquiesced.
Twenty minutes into the sail, a sudden strong wind came up, and it quickly dawned on me from the looks of panic on their faces that the crew members were boat refinishers, not boat navigators.
As the only experienced sailor on the boat, I told the skipper to head into the wind and hold it there while I worked with the crew to bring down the sails. Two minutes later, the skipper decided to help with the sails, leaving the tiller unattended, which caused the boat and that 20-foot teak boom to begin to rock violently from side to side. That’s the last image I remember of being on the boat.
My next recollection is of lying on a gurney in a chaotic and fairly rudimentary emergency room. I couldn’t move. I couldn’t speak. I couldn’t even make a sound. But I could think, and what began to roll through my mind was the conversation about end-of-life decisions that Pam and I and the kids had left unfinished until after the bike trip. Would our procrastination mean that we would suffer the same fate as the Schiavo family?
Fortunately I recovered, although it took 50 stitches across the top of my skull, where that teak boom had landed. Needless to say, in light of my brush with potential paralysis, brain damage, or worse, the family quickly put into writing the directions and thought processes that Pam and I wanted followed when and if it came time to invoke our respective healthcare documents.
How the Other Talk Evolved
An important epiphany grew out of my encounter with that 20-foot-long teak boom. In addition to establishing written contingency plans in the form of living wills, healthcare powers of attorney, and proxy designations, Pam and I executed wills, took out life insurance policies, and developed a retirement income and spending plan.
Many people would say that these actions constitute the full extent of long-term planning for this stage of life. But it dawned on us that we could do better. We had come to realize that, while we were still physically, mentally, and emotionally sharp, we needed to be talking with our kids not just about what to do at the end medically but also about the challenges, difficult decisions, changing roles, and shifting responsibilities that Dakota and Fernando will undoubtedly be part of between now and then.
We realized that we needed to include in the Other Talk a discussion of decisions to be made at the end as well as the issues of life that span the entire last years of life, including financing our uncertain future, selecting the best living arrangements, getting the medical care we need, and taking charge at the end of life.
Finally, it struck us that our plan should also include trigger points for when a particular responsibility needs to shift from parent to child. This is especially important because the deterioration of cognitive and physical abilities is often gradual and not as noticeable (or admissible) to the parent as it is to the kids. That’s why planning for it has to be done early.
As a result, we developed criteria that we all four could agree to but that would ultimately empower Dakota and Fernando to make the decision on, say, when, if, and how to change our living arrangements. It would be much better for them, and ultimately for us, if we discussed those decisions early.
The Two-Way Benefits
By sitting down with Dakota and Fernando to have the Other Talk, Pam and I were preparing ourselves and our family for what was to come while also establishing an environment in which we could focus much more on all the living that is ahead of us.
In addition, not only has our family thoroughly aired the potential decision points that could emerge in Pam’s and my last years, but we have also committed for the past three years to review and update it annually. This “annual checkup” approach benefits both the parents and the kids.
How? For Pam and me, it encourages us explicitly to recognize that our physical and financial condition will likely change in unexpected ways and that our assumptions and beliefs may shift over time. For Dakota and Fernando, as their own personal, job, and family responsibilities evolve, the annual checkup allows them to reevaluate and discuss the roles they are able to play in our last years.
On a more personal level, everybody in the family had his or her own take on how the Other Talk is making an impact on our lives together:
