The Ties That Bind

Dr. Jack Kevorkian died this past week. Probably, no other person forced us to ask questions about how we die like he did. Some credit him with giving people who felt they had exhausted their lives, especially those who experienced the physical ravages of dis ease, the choice to die with dignity. Others, including the State of Michigan, believe that Kevorkian was a murderer, although there are now three states that have laws allowing doctor assisted suicide, probably influenced by his work.

I have to admit to you that I am not quite sure what to make of Kevorkian. My old normal was framed by life with infinite possibility, and so then, he seemed like the right to die clown, playing the media like a cynical fiddle. In my new normal, I have come to understand why he has a quasi-hero status with many of my dis ease brethren. But the analytical side of me is skeptical of both portrayals. What really strikes me is the fact that no one has asked about why a doctor intent on the deaths of his patients would achieve such cult status. Absent from the noise is the question of just what kind of world would spawn a Jack Kevorkian. Obviously, there are metaphysical issues here that are too complicated for the typical news analysis, even when it is a well thought out retrospective on the man’s life. Kevorkian’s death makes me think about the ties that bind, the tethers of life that keep us going or in their undoing, make us want to stop. Kevorkian’s death makes me ask, is it fair to assume that life can become so unbearable that a human cannot see beyond a way to end it, or alternatively, is it fair to expect human beings to remain alive no matter what their level of suffering?

I would guess that you have some answer to these questions, and it probably has to do with quality of life. I would answer the same way. When I think of the number of men and women I have known who have overcome sickness, mental illness, pain and suffering, leaving this earth a better place, the list is impressive. Historically, I know specifically of composers such as Handel, Beethoven, heck even Frank Zappa, without whose works we would all be the poorer. Handel is one of my favorites. By all accounts, he most likely suffered from a bipolar disorder, yet he composed brilliant music and then sought to use it to help others. Up to the day he died, he strove to relieve the suffering of the poor through charity performances of his magnum opus, Messiah. In fact, the week of his death, he was rehearsing for such a performance. As oversung as is the “Hallelujah Chorus,” the world would be a far less hopeful place had Handel succumbed to his emotional and physical liabilities and not composed such a great body of musical works.

What was Kevorkian’s great work? His magnum opus–130 people ushered out of this world by his medical ministrations–was accomplished in a context of hopelessness. The infamous tape that he made of an ALS patient as he cajoled him to give it up was remarkably arrogant and stupid. On the tape, which he actually sent to 60 Minutes, Kevorkian almost tells the man that in his state of life, he has no living worth. I still have feelings of horror at how Kevorkian coerced this death. But I also hear a tiny critical voice inside that tells me that he was on to something and as our world redefines its relationship with dis ease, we’d better get our heads around what Kevorkian was really selling.

Dr. Death sold hopelessness to people who believed that they had no hope. He underscored our too easily held beliefs that a person with ALS, dementia, cancer or just plain, chronic, horrible pain has no real reason to live. In the name of death with dignity, he played on the ignorant stereotypes that lives with dis ease are only worthy of infamous endings. He played brilliantly to the rational death arguments—the financial or physical burden of life with dis ease, the pain of living with dis ease, the disability resulting from dis ease. Dr. Death knew the fears of his wider audience, and he underscored the logic of actuarial tables and not living beyond one’s time.

I will admit that dis ease has caused me to wonder deeply what it would take to wish for my own end. I know that many of my brothers and sisters who are far more affected by dis ease want to choose when they die, often fully supported by their families, friends and caregivers. I am way too early in my journey to comprehend their experience, and I would caution all of us. No one, not me or you, or especially Jack Kevorkian can truly know that edge of the cliff where life is hopeless and death is welcomed, until we stand upon its precipice. I think I get that much.

But here is the gauntlet that I would throw down. A culture of life has to meaningfully deconstruct the rationale of death. The burden argument could be removed through reasonable palliative care, costing the person what they could afford, not every last penny the family has. The pain rationale doesn’t work if people can consistently control the management of their pain. And while disability logic might be compelling, equally compelling is the fact that we have the ability to compensate for disability through technological means, and that ability is growing every day. I don’t mean to minimize the death rationale, and I recognize that each argument has a breaking point, but a culture that is about living encourages the relief of despair and fosters a sense of meaningfulness, no matter what. If each argument for death has a tipping point, then logically, there has to be the same tipping point for life. In other words, if we believe in responsibility to life, then we must meaningfully deconstruct the rationale of death.

When I was a kid, I used to love to play tetherball. There is a place in the game where, unless your opponent can stop the momentum, the ball will inevitably wind its way toward arrested motion due to its tight proximity with the pole. Early in the game, the ball swings easily both ways, but once it reaches a certain point, it requires great effort to stop it from speeding to its point of stasis. It isn’t an elegant metaphor, but follow it anyway. The way that we define our human existence starts almost from the first swing in the game. At a certain point, the momentum toward the endgame is almost impossible to stop. But the game is a lot more fun if you can play it with friends who seek to keep you evenly matched, who neither dominate your skills, nor give up easily. It is a lot more fun when there is a lot of back and forth, and the foregone conclusion of a quick windup of the ball to the pole is kept at bay.

For me, this means that all of us have to learn new ways to grow through the dis ease we most likely will face. All of us face the possibility of care for ourselves and others with dis ease, and all of us will be challenged by the windup of the dis ease game. I just think that it makes sense to try to keep the ball in play in a way that is good for everyone, keeping the play even so that we don’t become overmatched although our skills and abilities might falter. Eventually, everything winds up to its logical conclusion, but it doesn’t have to be due to helpless hopelessness. There may be other rules we could bring to the tetherball game.

New rules bring other choices. We can choose to follow Jack Kevorkian, cut the tether and drag the ball home, or we can choose the new “Hallelujah Chorus.” Above all, the choice is in the ties that bind.

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4 thoughts on “The Ties That Bind

  1. I believe in a person’s right to choose to die with dignity. And I cannot give this right less weight than a woman’s right to choose to terminate a pregnancy or no. Patients and their physicians make end-of-life decisions every day. These are personal and intimate decisions, generally made in the presence of family or close friends. Do you want to be treated with antibiotics if an infection arises? Will you want to be nourished and hydrated after your ability to take nourishment has been lost? If you stop breathing, do you want to be intubated? If your heart stops, so you want to be resuscitated? If your kidneys fail, will you allow dialysis?
    And when someone who is dying chooses to stay alive no matter what, there will still come a time when physicians are obligated to stop treatment. I know a doctor who said there comes a time to stop slapping away the hand of God.
    Now, I’ve always thought of death with dignity in terms of people with terminal disease,and make their wishes known when they are of sound mind. Just as I believe a woman should not have to justify her reasons to terminate a pregnancy, I believe we should not challenge a person’s wishes in this regard. And, apparently, everyone who has signed a living will agrees.
    Having worked with neuro patients, I have witnessed people surviving physical injury and illness against incredible odds. I have seen people who suffer greatly, refuse pain medicine, and rejoice in every agonized breath. I have been at the bedside of weeping suffering patients who do not want to draw one more breath. The decisions we are talking about are made in holy moments following considerable deliberation. I have no business imposing on anyone my opinion in their process. And, I hope I will find peace with my own choices if and when the time comes. And I hope my loved ones will honor my decisions.
    Giving the best care possible includes seeing the human being and honoring their choices. Kevorkian proosed this choice only for patients with terminal illnesses and claimed he did not persuade people to suicide. Death with dignity is a much broader issue than just Jack Kevorkian. He was a pioneer in the realization of the concept who was brave enough to publicly support it, theory to practice. In no way should he be seen as a perfect model for how to provide service any more than early efforts in the field of medicine should be followed today.
    Death with dignity is not about the care providers but intensely focused on the wishes of the dying.
    And now I have exhausted my meager attempts to express my thoughts. I bow to a master. Thank you for inspiring me to reflect on your words. Just tell me to stand down if I cause dis-ease in this arena.
    My motto of late? “God is good and life goes on.”
    Go figure.

  2. Full Disclosure: I have made the decision for myself that “heroic actions,” i.e. food when nourishment cannot be taken, breath when breath does no good, should be foregone when my body will no longer benefit from them. But feeding tubes and ventilators look different after a diagnosis of ALS, and the true issue becomes what kind of life we are able to lead after accepting that such treatment is necessary in order to continue life. I do not want to insert myself into the holy moments of which you speak, precisely because I would profane them. I just don’t want us to hypocritically miss the questions that actually have to do with life well lived. A vent should not automatically inspire the response, “Now what kind of life is that?” And people should be granted the control of their life and death choices with the very best of support and information. Thanks for carrying on the conversation my dear friend.

  3. Bruce,

    Interesting. Perhaps part of the equation, the one most folks do not want to examine, is what you think, feel, imagine, about death and how that fits into and is a part of life. Living in Oregon give me some comfort knowing that options exist and individuals can make choices that I believe they have the ultimate right to make.

    Again, perhaps being too much the pastor, I would suggest some reading for you, Bruce and for those making this journey with you.

    Dancing with Life , Phillip Moffitt
    Spontaneous Evolution , Bruce H Lipton and Steve Bhaerman

    Finally and perhaps for your family and friends:
    Being with Dying Joan Halifax

    I hope this epistle will be received in spirit and intention it has as it leaves my mind.

    Pastor Bob

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