A Living Will Is Not Enough

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For the next few weeks, we are featuring some of our favorite blogs from years past. This entry was first published by In Care of Dad on February 24, 2011.

 

by Shira Tannor

My dad, a retired psychiatrist, died on St. Patrick’s Day 2009. Though he was nearly 84, his death came upon us suddenly in a whirlwind few days of pain and confusion. Dad had been diagnosed with squamous cell skin cancer and had had two surgeries in the span of three years, both times bouncing back from what seemed like nothing more than a mere nuisance. A robust man who rarely took as much as an aspirin, he soldiered on with confidence and optimism and so did we. But when his cancer appeared for a third time, and he was facing what he knew would be a prolonged and nasty fight, he understood with quiet dignity that this was not just another nuisance and opted for an aggressive course of chemotherapy as his last best shot. None of us thought when he started down this path that just two weeks later he’d be dead.

Dad was a responsible and pragmatic man who adored his family and kept us close. No surprise then that he had taken good care to provide for us in death as he’d always done in life. There was life insurance to cover funeral costs, burial plots for the entire family, a Family Trust, Durable Powers of Attorney, Health Care Proxies and a Living Will. Everything was up to date and in place. But when Dad suddenly lay intubated in a hospital bed, hooked to a bevy of life-prolonging devices, we discovered the hard way that he’d forgotten something critical — he never, ever talked to us about how we, as a family, would and should deal together with the difficult and heart-wrenching decisions to end his life.

For a man who made it his business to understand human nature, and who presided over family meetings on far lesser issues, Dad was strangely silent on this one. Keenly aware of our differences, chief among them that my brother, the firstborn and beloved only son, is an Orthodox Jew, Dad somehow never engaged us in any discussion of what we should do if faced with the terrible prospect of having to end his life. The plain vanilla language of his Living Will directed us to remove him from life support if he couldn’t live on his own, but there was no further instruction and, in those awful few days when his life had essentially slipped away and we most needed his wisdom, there were no more words. I wish there had been. We all did.

A year before his death, Dad decided to remove my brother as co-healthcare proxy (along with my mom, sister and me), knowing that my brother’s religious beliefs might conflict with future healthcare decisions, especially if it ever came to having to “pull the plug.” Dad’s intention was loving. He wanted to spare my brother and the rest of the family from conflict and unnecessary discord. But he couldn’t. He never spoke to my brother about his decision, and my brother, who raced in from Israel to be with his dying father, and who never left him for a moment, only learned of it when I spat it out at him, raging and frustrated, defending Dad’s right to die.

It wasn’t only my brother who wasn’t prepared. None of us were. In spite of our closeness, we were not prepared for how differently each of us would respond to the devastating prospect of losing our father. We were not prepared for the difficulty of having to make big life-ending decisions in a torrent of anguished emotions. And we were certainly not prepared for the hurt of getting in each other’s way, rather than reaching out to one another for love and support in such a terribly difficult time.

We had gathered together around Dad, but we were not together. My brother understood Dad’s wishes, but he needed time to find a way to participate in Dad’s death. He would not pull the plug, but he wouldn’t cede his role and become a mere spectator either, as he icily declared. My sister, who’d always been a hardcore, science-oriented empiricist, was emotionally overcome by the cruel finality of Dad’s situation and pleaded for more time, holding out hope, despite what she knew in her heart, that he might still come back to us. And then there was me, the family Executor, awash in my own grief and disbelief, feeling passionately that I needed to defend Dad’s right to die. Every pump and drip keeping him alive felt like such a violation of his directive. I thought it was so selfish of my siblings to put their needs above Dad’s wishes, and I angrily said as much. Meanwhile, Mom, sleep-deprived, panicked and confused, was unable to lead the way. Finding validity in each of her children’s points of view, Mom wanted only to keep the peace.

For three and half tortured days, our close-knit and otherwise loving family struggled as we slogged, teary and tormented, toward consensus. It was a painful process that I wouldn’t want to repeat, but I did learn a few important things. I learned that having a Living Will is not enough. I learned that if you are entrusting someone with the solemn and sacred responsibility to end your life, you MUST talk to with that person. I learned that if someone thinks they’re entrusted with that responsibility, but isn’t, you MUST talk with them. I learned that if your parents haven’t talked to you, you MUST talk to them. Don’t wait. You MUST talk to them, and then you MUST talk to them some more.

As you do, consider these points:

  • When, specifically, should you be removed from life support?
  • How much time is sufficient for you to ascertain whether you can be revived or ever come back? (My partner, for instance, has asked that I give her two or three days to “linger,” just in case. I, on the other hand, don’t feel the need for that extra time.)
  • Who are the primary players making this decision for you? What are they like? What do they believe in? Do you think they’ll be ready or capable? And what if they’re not?
  • How should your loved ones work together to make this decision? Is there a designated team leader? Are you okay with the idea of giving them whatever time they need to come to consensus?

You MUST talk to your loved ones. Be clear. Be direct. Make sure they really understand, and let them know you’re doing this because you love them.

In the end, we didn’t have to pull the plug. Dad died on his own just minutes after we agreed on how we would go forward. It’s as if he waited until he was assured his family would come through, loving bonds intact. When we did, he took his last breath and let go.

 

Shira Tannor lives in San Francisco, California.

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