End of Life Planning--A Necessary Conversation

08/18/2010 06:45 am ET | Updated Nov 17, 2011

When Max, 62, lost his 59-year-old wife Jan unexpectedly to a heart attack, he felt totally adrift for the better part of a year. He was not in good health himself, having been diagnosed with emphysema and having already suffered one heart attack. Because of his own frail health, he had always expected to be the first one to go, and he had never given a moment's thought to what he would do or what life would be like if he were to be widowed.

Max and Jan had a will, and here again Max had always expected everything they had to go to Jan. They talked about how she might sell their house after a year or so and move into either one of those over-50 condominium complexes that seemed to be springing up wherever they looked, or else into an assisted living center, depending on how old and healthy she was at the time.

Now Max found himself confronted by a totally unexpected set of challenges. Though not having a formal terminal diagnosis such as end-stage cancer, Max was nevertheless fully aware that his health was continuing to deteriorate. He had relatively little stamina, and even that was waning. He had recently got a rechargeable, battery-operated cart that he used to navigate through the local shopping mall. It was easily disassembled and stored in the trunk of his car. And about a year before Jan died, they had an elevator chair installed in the house so Max could ride to the second floor if he felt too weak to climb the stairs.

Max's greatest fear was that he would become incapacitated. He and Jan had three sons. All were grown, but the truth was that only one of them was responsible enough to be trusted to make decisions with a level head and not just his own self-interest in mind. Max truly loved all of his sons, but he knew that he needed to seriously consider putting someone in charge in case he could no longer fulfill his long-time role of money manager.

Max had been a successful contractor, and as a result the family had considerable assets. He also had four grandchildren. They had been the apple of Jan's eye, and Max knew that she would have wanted them to be taken care of even more so than their sons.

Max ended up taking the advice of his personal physician and consulted an attorney who specialized in estate planning. That attorney walked Max through a host of legal issues and helped him develop a plan. Together they met with Max's most responsible son and went over the documents and the plan. The son was named executor of Max's will. He was also granted several forms of power of attorney, not only financially, but also with respect to making medical decisions for Max in the event he could not make them for himself--for instance, if he were to slip into a persistent unconscious state or was unable to think clearly due to drug effects. Max also set up a trust, with the attorney as trustee, to manage his and Jan's remaining assets according to guidelines that Max laid down.

Perhaps most important of all, Max then had a long talk with his son. A few months earlier he had visited his best friend after that friend had been admitted to a hospital when the cancer that was killing him had proliferated in his chest and brain. Max hadn't liked what he saw there. It broke his heart to see his friend lying in that bed, connected to all those tubes and monitors, but totally out of it. "His eyes were open, but he was just staring into space. He was being kept alive. But for what?"

Max told his son that, should he become incapacitated, he would not want his son to authorize medical interventions that were unlikely to significantly improve his overall quality of life. He specifically did not, for example, wish his son to authorize any procedure which would most likely leave Max still incapacitated. "I do not wish to be kept alive just for the sake of being kept alive, or on a remote chance that I might regain consciousness. Not if the overall prognosis was unchanged," he explained. "Is that clear?" His son nodded. "Okay," he said, "if that's what you want, Dad, then that's the way it will be."

Lastly, Max brought all of his sons together for a meeting and explained the arrangements he'd made. He repeated the instructions he'd given to his oldest son. After that he was quite satisfied and didn't spend much time thinking about death or dying.

I regard Max as a good role model for facing up to death and planning for it. Because medical procedures today can so effectively stave off death--sometimes temporarily, but sometimes indefinitely--many families will find themselves having to make the kinds of decisions that Max's son might well find himself facing.

We have heard any number of stories in which family members assented to medical interventions that they were clearly ambivalent about and were unsure that their loved one would have agreed with. One woman told us how her brother, who had been given authority to make medical decisions by their father who was 90 years old and suffering from dementia, agreed to have a pacemaker installed. "Dad rarely is lucid," the woman explained, "and when he is it never lasts for long. He spends 99.9 percent of his time sitting in his chair in the nursing home, staring blankly into space. But my father would not talk about death while he was still lucid, and my brother didn't feel comfortable saying no to the procedure."

The people we choose to make medical decisions for us, in the event we are not able to make those decisions for ourselves, need to be clear about just how far we would want to go. Would we, for example, prefer life over death if that life were in a vegetative state? Or if we were not able to recognize anyone we know? To make our choices known, so as to be able to inform the decisions that we authorize our loved ones to make for us, requires a conversation of the type that Max was brave enough to initiate. How would the above situation be different if this woman's father had been willing to engage in this kind of conversation?

May we all be able to reach inside and tap Max-type courage when our time comes.