Tag Archives: death with dignity

More thoughts on dying a good death

Everyone keeps telling me, “You don’t look ill! You look great!” I know they mean it as a compliment, but I DO have a belly full of cancer, and I definitely look better than I feel. In truth, I’ll probably be the best-looking corpse at the funeral home later this year.

I’m definitely on a long slow slide downward, with small upticks along the way during which I look and feel better. I spend long productive hours at home weaving, spinning, and writing, when not sidelined by drug-induced fogginess.

The palliative painkillers have certainly saved me a good deal of physical distress, but they create additional problems (some of them detailed already). As I observed in my earlier blog, dying people are offered handfuls of drugs to ease pain, to reactivate sluggish bowels, to quell anxiety, to fall asleep at night, but we generally are not offered non-drug alternatives that might help us maintain a clearer, cleaner and swifter end-of-life. Conscious death is a movement that has not yet taken hold here, so we have only the drug model to turn to.

Because Indiana is so backward, and because it has permitted medieval religious ethics to taint our laws on assisted dying, there is no death-with-dignity option for me. Because I do not want my death to be prolonged, I instead have drawn up a Do Not Resuscitate order that has been suitably witnessed and registered.  But here’s the question: in effect, don’t my painkillers constitute an artificial prolonging of life, since they keep me alive without allowing me to recognize how gravely ill I am? In ancient millennia, without pain relief, people at my point in the disease would simply curl up in a corner and refuse to eat until they shriveled up and died, but modern pain relief is now keeping me alive, and enabling me to eat small meals, since I can’t feel the majority of the pain in my belly.

Many people would at once say “That’s the benefit of modern medicine! It allows you to maintain your quality of life for weeks, even months, much longer than you would have had in a pre-industrial society.” Well, that quality-of-life issue is the sticking point. I’m still on a very low dose of prescription painkillers, and once my cancer has grown sufficiently to require higher dosages, my current quality of life will vanish as I become too groggy to write, weave, spin, or even take a stroll outside without a buddy to watch over my staggering feet. What then? And with my mind increasingly stupefied by narcotics, how can I expect to practice mindfulness meditation, self-hypnosis, or the daily attempts at maintaining a good attitude that have served me well until now?

Are these drugs really the best we can do for our dying ones? I don’t have a lot of answers, or a lot of wisdom; I’m just stumbling down a darkening passageway, commenting out loud as things slowly occur to me. But it seems to me that piles of drugs are not the best option for someone who wants to die peacefully, with dignity and intention, and without any nonsense.

Image by Chessley Sexton.
Image by Chessley Sexton.
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On courage

Furry

Because of my public blog posts about my experience with cancer, many people have told me “You’re so courageous!” and “I can’t believe how brave you are.” I always feel like a fraud when they tell me this, because I feel just as frightened as anyone else who expects to be dead before the year is up. But as my very wise mother-in-law once said to me, “Most people don’t understand what ‘courage’ really means. ‘Courage’ doesn’t mean that you have no fear. It means you do what you have to do, even though you’re afraid.”

I’m frightened not by Death itself, but by the nasty consequences leading up to the physical act of dying. More on that in a moment.

Death holds no fear for me because to me it simply represents the closure of the life cycle. It’s something that every human has done before me for a million years and more. It’s something that every creature currently walking, crawling, swimming or flying on earth will experience at the end of its life. Why be afraid of a natural process that is shared by all? Many people experience debilitating fear of things—spiders, storms, heights, etc.—that other people regard quite calmly. As a young woman I was terrified of what I imagined to be the agony of childbirth. Imagine my surprise and delight when at the age of 36 I finally went through childbirth and found it to be gentle and easy, in no way similar to any expectation I had held. It was all-natural, no drugs, and I was completely conscious the whole 24 hours of the process. It was the most magical and the most deeply profound experience of my entire life. During the birth my mind simply stepped aside and let my body take over (which it did PERFECTLY). So might not Death turn out to be similar to Birth in this way,  the body taking over from the mind and guiding it through an instinctual process that’s powerful and remarkable, with distinct stages to be experienced along the way?

Unfortunately, the modern experience of death is much like the modern default for childbirth: the idea is  simply to medicate the patient heavily and monitor the vital signs. Hospice keeps suggesting higher doses of narcotics for me, but I don’t really want to be stoned on drugs during my last weeks of life. I want to remain clear-headed as long as possible, so I can continue writing and engaging in my fiber-art activities. These things help me maintain a good quality of life and cannot be done in a drug-induced fog.

And yet the medical issues that plague me are very painful. I’ve already taken a course in mindfulness meditation for cancer patients. Are there additional alternatives to addressing pain in a non-drug manner? Unfortunately, palliative care seems to be built upon a foundation of drugs, drugs and more drugs. As I have learned the hard way, narcotics have extremely undesirable “digestive consequences.” And of course there are drugs to combat that problem as well, although they don’t work well for me.

If I could avoid all narcotics, I’d be in much better overall condition right now, and could meet my end consciously, without being a doped-up constipated zombie. As usual, I’m stuck here in Bloomington without the resources and options that exist in other states and countries. These include legal Death With Dignity; perhaps a center that offers Conscious Dying services; an alternative attitude toward death in general; and maybe a death doula to guide the process.

So, we’re back to the concept of “courage.” Although not frightened by the idea of Death, which I see as the welcome end of pain and suffering, I’m scared to death of what I’m soon about to plunge into: the loss of my body’s integrity and dignity; the humiliation of the bowels; the lack of viable non-drug options; the lack of understanding on the part of medical providers; pain followed by narcotic stupor. Scared? You bet I am.

But as there’s no alternative for me, I simply keep stumbling forward on the path I’m on. Is that real courage? I have no idea.

The most difficult question

20141027_101624Doctor-assisted dying is not a choice for ill people in my state. Nor is it an option nationally, as it is in Switzerland, Belgium, the Netherlands and several other more enlightened countries.

Many people will immediately protest: “But obviously, suicide should never be legalized or encouraged.” To which I reply, as a person with terminal cancer, “My desire to take an early exit is a completely different thing than a healthy person who commits suicide.” I want only to hasten the inevitable and painful death that already looms on my horizon; I do not seek to end a healthy life filled with possibilities.

Speaking rationally and without depression, and after a lifetime of considering the ethics of the question, I would choose physician-assisted dying in a heartbeat, knowing what I am soon to endure. But it’s not legal here.

(Warning: skip the following single paragraph if you are easily horrified.)

I have carcinosarcoma, also called Malignant Mixed Mullerian Tumor, which is so rare that there is little research being done on it, and no cure. After living with it for a year and a half and enduring major surgery and various chemotherapies, I’m now in the terminal stage of the disease. The cancer has spread throughout my abdomen and into my liver and lymph glands, but this won’t be what kills me. A large inoperable tumor is embedded low down between my intestines and is impinging painfully upon my bladder and rectum. The rapid growth of this tumor will soon pinch off these vital systems and leave me completely blocked, unable to urinate or defecate. The tumor is growing so fast that my belly already resembles that of a woman five or six months pregnant; this distension will increase swiftly in the weeks to come. Any surgical attempt to correct the blockage would only temporarily extend my life while exposing me to even more continued suffering.

Quite calmly and rationally I ask you: why is it against the law for a physician to help me make a dignified early exit with my head held high? Why should control over the end of my own life be dictated by other people’s emotional and religious scruples? An assisted death with dignity would spare me horrible suffering and would prevent my family and friends from seeing me waste away to a skeletal form with a hugely distended belly. Why do lawmakers feel so certain that dying people should have to endure their full quota of pain?

In this country it’s legal to put down a dying pet. In fact, it’s considered to be the most humane solution to ongoing pain. So why does our government compel human beings to go through the kind of suffering that we would never allow in our own cats and dogs?

Perhaps you happen to believe that human life has a sanctity that must not be tampered with. That’s fine, and I respect your religious values (although I must point out that the Bible nowhere contains the phrase “sanctity of life”). But an enlightened society should not allow followers of a single religion to enforce their religious beliefs upon others, nor should those religious tenets be encoded into the default government over all Americans. I believe that subjecting me and my family to extended suffering serves no useful governmental purpose and displays a profound lack of compassion.

I seek only peace, and a quick end to my suffering. And this is exactly what’s being denied me. I believe that the Swiss, the Belgians and the Dutch have it exactly right when it comes to compassion for the suffering: after a waiting period of several months, and a close vetting of the medical records, patients are allowed to gently and painlessly pass away in the presence of their family and friends. We need this option in the United States.

Please share this text with your legislators and your governor.