It’s dinnertime, a chance to unwind with the family. But in the home of Jay Luxenberg, this is also a perfect time to talk about dying.
“I have teenage boys. They are the worst people to talk to about end-of-life decisions,” Luxenberg said. “It’s uncomfortable, and they squirm when we talk about it at the dinner table but that is the solution” to pinning them down to discuss important issues.
Luxenberg, director of medical services at the Jewish Home in San Francisco, takes that time to talk to his boys about what will happen when he dies and how to plan for his medical care if he is unable to speak for himself in the future.
Luxenberg was one of four panelists invited to speak on advance health care decisions at a recent talk in Palo Alto. The talk was co-sponsored by the local Albert L. Schultz Jewish Community Center and the Jewish Home in San Francisco.
Though death is never a topic people like to discuss, especially at 9:30 a.m., health care adviser and panelist Pamela Kaufmann doesn’t think that should deter people from contemplating the subject.
“The best time to prepare a health directive is now,” Kaufmann said. “And you’re never too young to do it.”
Nearly 30 people attended the panel as experts directed them on how to make advance health care decisions now for the future. Some were there because they will have to make the decision for themselves, while others, like Moshe Levin of San Francisco, were there because they might have to help their parents make that decision.
Stephanie Brown, director of the JCC’s J-Connect program, said that after the public controversy surrounding comatose patient Terri Schiavo, Brown thought that the community could benefit from learning about advance health care decisions.
The issue became more real to Brown, she explained, when she was faced with a similar decision when her mother became ill. “Before that, I never gave the issue much thought,” she said.
Attendees were reminded that they not only have the right to make decisions about their health care, but they also have the right to name someone else to make health care decisions for them when they are no longer able to.
Plus, preparing for death helps lessen the financial and emotional burden on the family and assures that caregivers know what they should do in the last stages of one’s life.
“In short, appointing a decision-maker in advance preserves your autonomy and dignity, and assures that your voice is heard,” Kaufmann said.
As Rabbi Sheldon Marder of the Jewish Home read poems and literature contemplating end-of-life issues from a Jewish perspective, Kaufmann and Luxenberg took a closer look at what all people should do — regardless of religion — when contemplating death.
“Irrespective of what you decide, the person you designate will make the decisions,” Luxenberg said. “Despite what you write, however, different circumstances will present themselves.”
As an example, he gave the case of a woman who was diagnosed with Parkinson’s disease. After discussing the issue with her daughter and her doctor, the patient decided that when she could no longer maintain her own weight and feed herself, she would prefer to die rather than be put on a feeding tube.
After putting that in writing, months passed. Then the time came when the woman no longer was able to feed herself. But, contrary to what she originally requested, she didn’t want to die.
“One thing I’ve learned from this is people change their minds,” he told the group.
A way to ensure that the patient and the chosen decision-maker, or proxy, are on the same page is to have ongoing discussions, Luxenberg said.
“It’s important that you have constant, continual and sophisticated dialogue with your proxy — of all different circumstances of end-of-life issues — so that the proxy has an understanding of what you want.”
One problem people have when getting ready to write their directive is deciding which person to choose to make such end-of-life decisions.
“Don’t let concerns about family politics prevent you from making
a decision,” Kaufmann advised.
While the panel addressed concerns about how to make health care decisions today for tomorrow, attendees asked questions covering a wide range of topics: from cremation to assisted suicide to how to handle the body after death.
Kaufmann stressed that it is important to give death serious thought.
“When you are in the quiet of your own thoughts, what you want intellectually is not what you would want emotionally,” she said.
Information on health care directives can be found in books and online. Locally, Santa Clara County Probate Court answers commonly asked questions and offers downloadable forms at www.scselfservice.org/probate/finan/healthcaredec.htm.