Columns Jeffrey Weiss: My Way to the Egress Opinion

Why even the worst cancer news won’t push me to try every treatment

An old style of hospital bed. Photo courtesy of Creative Commons/Matthew Perkins

(RNS) About a month and a week after the discovery that I have the brain cancer glioblastoma, I’m in a six-week program of radiation and chemotherapy.

There’s plenty of data that indicates the side effects are often real but often not terrible. And that the benefits are significant.

But it ain’t a cure.

This bumps the median survival expectation up from a few months without treatment to a bit less than a year and a half. That means I’ll be looking to try other, mostly experimental, treatment possibilities down the line.

I’m not planning to ask for some of everything, however. My philosophy is shaped partly by what I, a mostly agnostic Jew, have learned about some of the Jewish traditional teachings about medical treatments.

This Jewish point of view isn’t unanimous, of course. There’s no Jewish “pope” defining anything. So there’s little that is even close to universal. But what I’m thinking about has gotten a lot of attention over the millennia.

And it’s surely different from other religion-influenced perspectives expressed by some people.

Anybody who recalls the case of Terri Schiavo in Florida knows something about the extremes on one side. In 1990, she suffered some kind of seizure that killed most of her brain because of lack of oxygen. The part that stayed alive kept her heart and other internal organs going. But I read nothing that indicated there was real evidence she had any significant mind. Or even an insignificant mind.

Her parents wanted to keep her alive as long as possible with a feeding tube and any other technique. By 1993, her husband wanted to sign a “do not resuscitate” order preventing treatment for any infection and later he wanted doctors to remove the feeding tube and allow her to pass on. He said that’s what his wife would want.

In 2001, he won a court case that allowed him to have her feeding tube removed. She died 14 days later, shortly after her husband had her parents moved from the room.

“So his heartless cruelty continues until this very last moment,” the Rev. Frank Pavone, national director of Priests for Life, told Fox News.

After her death, the Vatican released at least two condemnations with a religious perspective.

Based on that, I should go for every treatment I can get, yes? And my wife should do the same if I lose so much mental capacity that I can’t act.

But that’s not what I plan.

I’ve already told my doctor that I want to know the details of risks and potential side effects along with possible benefits. If I’d gain time but lose all or a large portion of my mind, I’ll pass.

If I’d suffer such enormous physical side effects such as pain that it kills my quality of life in exchange for a bit more time, I’ll pass. I have limits.

The Jewish teaching that I think about here is a story in the Talmudic tractate called Ketubot.

A famous rabbi, Judah HaNasi, was dying. But his students kept him alive by continuously praying for divine mercy. The rabbi’s handmaiden agreed until she saw how much pain the rabbi was in. So she climbed to the roof and tossed a jar to the ground. The noise distracted the students for a moment. They paused praying and “the soul of the rabbi departed to its eternal rest.”

The Jewish writing does not condemn the woman. In fact, she’s presented as a hero in several high-level recent and old commentaries. For decades, medical ethicists have used the story to frame discussions about treatment withdrawal as care becomes higher tech.

For many recent years, even proponents of euthanasia have used the story.

I’m not pushing my thoughts that way — yet. (Though it’s possible I might decide I want to get my own ticket to the Egress at some point.) But I’m absolutely thinking about limiting treatment based on specific reasons. Not all potential life is equally valuable to me.

I will be ready to offer a polite “no thanks” to the medical equivalent of a successful life-extending prayer that offers the odds of neither a cure nor enough of a reduction in suffering. And I’ll get to whatever eternal rest comes next.

(Jeffrey Weiss is a longtime reporter who covered religion, faith and morality issues for more than a decade. In December, he was diagnosed with a brain cancer. He’s exploring how a likely end of life should affect his thinking about beliefs and behavior)

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Jeffrey Weiss

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  • It is frustrating to continue to read all of the inaccuracies that continued to be written about my sister Terri’s condition/case. Probably not Mr. Weiss’s fault, but I can probably guess where he found his “facts”. If I had to guess, it is from media accounts reporting her case. Regardless, your article, Mr. Weiss is rife with inaccuracies.

  • It might be nice if you actually detailed the “inaccuracies” of the case.

    As far as I can tell, the only accuracy is that a legally married husband, the legal next of kin, had a lot of people who weren’t legal next of kin interfering in his life, and the party of small government was more than eager to get the state in between husband and wife.

  • First, thank you for your civil comment. Civil and strong disagreement is absolutely a vital part of important discussions. With all due respect, however, I’ll say that i read a lot about your sister’s case back when it was active. Many, many media accounts. Accounts that included lots of material from both sides and considerable medical material. I came to the conclusion, then as now, that those wanting to keep her alive were doing so based on a particular religious perspective. May your memories of her be a continuing blessing to you and all of her family and friends. But if I am ever in her condition, there’s no question that my choice will be what finally happened to her.

  • Ben, I understand your remarks though I am ambivalent about this case as I was neither present, nor am I qualified to comment medically. And if you were replying to anyone else I would have kept mum…but as you are replying to Terri’s brother who was there, who clearly loved his sister, and doubtless had an interest in her welfare regardless of the legal aspects of their relationship, I felt it necessary to remark. In your own case, you felt put upon when the legal system denied you the right of marriage based on past historical practice, so in at least this instance what was legal was not germane, or rather, legitimate to your point of view. My real point, I guess, is that you were less kind to Mr. Schindler than you might have been, for I’m sure that he still grieves for his sister.

  • As you are a self declared agnostic, and I for my part am not, I would urge you, as I did before, in the time left to you, to explore the possibility of some spiritual avenue with respect to just how you will spend eternity. As a Christian, I naturally recommend studying the Life and teachings of Jesus, though I can appreciate how that might be repugnant to you given the sins committed against the Jewish people in His name. But He is not to be faulted for the misdeeds of the zealous and sometimes misinformed. He deserves to be taken on His own terms. I wish you well.

  • Mr. Weiss,

    First, I wanted to mention that I am sorry to read about your recent diagnosis. I will be sure to keep you and your family in my prayers.

    I am not in the habit of relitigating Terri’s case, especially on a message board. And what I say probably isn’t going to change how you feel about her situation.

    Nevertheless, I would like to mentioned just a few things that were largely ignored by the media and perhaps in your research.

    One is regarding Terri’s condition. Terri was not in a coma, was never dying, was not on any machines aiding her, and there were many physicians who believed, as well as my family, that she didn’t meet the PVS criteria.

    Yes, Terri had a profound brain injury, and as a result had difficulty swallowing, and therefore needed a feeding tube so she could receive her food and water. But before Michael decided to end her life, my family would take her to the mall, the movies, home, to the hair salon and other places. All Terri needed was a wheel-chair and we could take her anywhere.

    In fact, when she was receiving therapy and rehabilitation just after her brain injury Terri was showing signs of improvement. So much so that she was beginning to form words. Her progress was noted in her medical files (and a diary Michael was keeping) so it’s not just my account.

    Sadly, just a short time after the promising signs of the improvement, even if very slow, Terri was making, Michael decided he was going to stop all of her – much needed – future rehabilitation, and for over a well over a decade she was abandoned, and warehoused in different nursing homes.

    This was despite upwards of 40 medical professionals who all believed that Terri wasn’t in a (persistent vegetative state (PVS) and/or could have been helped with ongoing rehabilitation. Some of these medical opinions came from prominent neurologists. You can read them here if you like: http://www.lifeandhope.com/terri_schiavo

    I would also like to mention that Michael had significant conflict of interests, and it was in his best interest to end Terri’s life.

    One was that he stood to inherent Terri’s Trust fund – which at the time of his petition to end her life – was close to one million dollars. At the same time, he was living with and admitted that he was engaged to his girlfriend who he fathered two children during the struggle to end Terri’s life. His loyalty’s clearly shifted.

    My family had absolutely no conflicts of interest. Our only intention was to bring Terri home and give her the care that she deserved. And I am not going to discuss the absolutely absurdity that it was Terri’s “wish” to die.

    Finally, no family, especially a father and mother should have to watch their child die by dehydration and starvation. This was barbaric and I could never properly describe the insanity of deliberately denying food and water to a human being, guilty of having a brain injury. But yet we do it every single day.

    I really could go on, however I will not continue to post any more about this, but feel free to visit lifeandhope.com to read more about Terri’s situation and the work we are now doing to help families protect their loved ones. God bless you. Bobby

  • Edward, first– thanks, as always, for your courteous comment. I wasn’t trying to be unkind to him, and if he took it that way, he said nothing to me.

    I have no Doubt that he loved his sister. But he is the one that said that there were facts in his possession that would change the nature of the case. He has finally detailed those things iN a response to another poster. And that is good. These are things which, if true, do indeed cast a different light on the matter.

    The issue for me is my usual one, and that issue is not what has been resolved. People with strong religious beliefs using the law to force their religious decisions and religious beliefs into the lives of others who don’t share those beliefs.

  • I share his perspective. I’m squeamish about assisted suicide but I am for hospice care. I hope his end is peaceful and pain free and that nobody tries to bully him into giving up control.

  • He is exploring spiritual avenues, namely the Jewish perspective on end-of-life decisionmaking. Judaism views how you live your life as more important than how you will spend eternity.

  • My thoughts on death are very similar to the author’s. I want details details details about a treatment. I want more than how long it might extend my life. How will it affect my overall physical health and activity? Most of all, my brain? If i can’t remain fundamentally myself, I don’t want it.

  • And yet I don’t understand that. Within the Christian context, how you live your life is singularly important, but particularly with eternity waiting in the wings. Within the Christian paradigm, one can live one’s life reasonably well as regards our relationship to others, but if we don’t have reference to our lost state, the result of the fall from Eden, all of our good works are as “filthy rags” in the eyes of the Lord. We at called to recognize our fallen state, repent, and put our lives and eternity in the Hands of Jesus. Even in repentance we are still prone to fall, and thus it is an ongoing practice; not from a heart of carelessness, but from our natural weakness as fallen creatures. I’m gratified that he is exploring spiritual avenues, I’m merely suggesting one that however culturally difficult, might be an eternal benefit to him. It’s all meant in a kindly spirit.

  • And yet in his remarks, he made no mention of religion, but delineated specific medical and scientific reasons for his distress at the outcome. However, the issue that you allude to; i. e. religion, is clearly not going to go away, you and I both know that. And as day follows night, it will remain unresolved, at least for the foreseeable future. Peace.

  • I know you mean it in a kind way, but you are certainly aware that Jews might not see it that way. I do think that Judaism’s non-belief in original sin, plus rejection of the idea that only belief in Jesus Christ or anyone/anything else can result in eternal life, does lead to more of a focus on what you do in this life.

  • I think that’s because for many people they can only believe in what they see…and basically this life is what they see.

  • Very sorry to read of your diagnosis and treatment prognosis. My thoughts and prayers go out to you. However, I don’t really see how the case of Terri Schiavo relates to your medical situation or decisions or is helpful to your piece, other than the understandable sentiment that you don’t want to end up like Schiavo. But you are conflating two very different things. I think your thoughts and decisions about your medical care related to your medical situation are very rational and understandable and defendable and shared by many, including me, a Christian. I would choose a similar path. Death to me is not the worse outcome. Schiavo was a very different situation, but in any case, the principles involved in making medical decisions were not her, but a husband and her parents, and I respect the complications and difficulties of those decisions and viewpoints, and I judge none of them from my distance. Choose your medical care path as much as you can, for as long as your are able, then be sure to select and legally designate who you want to make those decisions for you if that day comes when you cannot. It is entirely understandable not to pursue certain medical treatment that has little promise of helping, and more promise of prolonging pain and suffering. It is entirely legal, and religiously ethical, to choose not to be artificially fed or hydrated, in a terminal medical context, if that is your clearly expressed choice. Though my hope and prayer is that your treatment will prove to be successful and your prognosis much better in the months and years to come.

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