Ars Moriendi, Part Three: Ordinary Angels*

Parts One and Two considered the “before” and “during” of end-of-life care (and once again, Bill Keller’s piece is recommended reading: check it here), and the final sections of my memoir deal with the “after”. One of the tensions I try to explore (in under 70,000 words!) is the often enigmatic, occasionally exhilarating connections we make (with others, with ourselves) before, during and yes, after death. As indicated, the so-called takeaway –at least in its author’s eyes– of my memoir is that anyone who encounters this material might be a bit better informed and therefore equipped to do what they can, with kindness and charity, to ease the transition with a minimum of needless suffering. If I were to narrow that down to one word/concept, it would be easy: Hospice. For lack of a better, or more long-winded explanation, Hospice workers combine the best aspects of the religious and medical communities: combining compassion and expertise to alleviate pain (physical and emotional) and provide the support and solidarity that tends to absent when patients are either abandoned or let down by the priests and doctors.

They are not miracle workers; indeed, their unique charm is helping people realize that there are no miracles: death is going to happen when, to paraphrase John Lennon, we are busy making (or hoping to make) other plans. They do for some of us what so many of us could not begin to do for ourselves: manage and oversee our last days with the wisdom and patience (and, always –and importantly– the proficiency) that defines the vocation they’ve chosen. And their efforts on our behalf, speaking of “us” as a community tied together by the one thing everyone has in common, are in many regards the ultimate huminitarian act. And, tragically if typically, this type of work (this type of acknowledgment of our frailty, something so consistently emphasized in religious texts) is easy to demonize, distort and willfully misunderstand. Mankind cannot bear very much reality, wrote T.S. Eliot. That is why, at times, we turn to churches, or texts, or other people. Hospice helps us come to some degree of peace with the one reality no sane person should ever easily embrace.

Once again quoting Keller:

Here in the United States, nothing bedevils our discussion of health care like the question of when and how to withhold it. The Liverpool Pathway or variations of it are now standard in most British hospitals and in several other countries — but not ours. When I asked one American end-of-life specialist what chance he saw that something of the kind could be replicated here, the answer was immediate: “Zero.” There is an obvious reason for that, and a less obvious reason.       

The obvious reason, of course, is that advocates of such programs have been demonized. They have been criticized by the Catholic Church in the name of “life,” and vilified by Sarah Palin and Michele Bachmann in the pursuit of cheap political gain. “Anything that looks like an official protocol, or guideline — you’re going to get death-paneled,” said Dr. Ezekiel Emanuel, the bioethicist and expert on end-of-life care who has been a target of the rabble-rousers. (He is also a contributing opinion writer for The Times.) Humane end-of-life practices have quietly found their way into cancer treatment, but other specialties lag behind.       

The British advocates of the Liverpool approach have endured similar attacks, mainly from “pro-life” lobbyists who portray it as a back-door form of euthanasia. (They also get it from euthanasia advocates who say it isn’t euthanasia-like enough.) Surveys of families that use this protocol report overwhelming satisfaction, but inevitably in a field that touches families at their most emotionally raw, and that requires trained coordination of several medical disciplines, nursing and family counseling, the end is not always as smooth as my father-in-law’s.

***

i.

My neighbor died, abruptly, while I was away at college. The girl across the street told me what happened: it was sudden, totally unexpected.

I didn’t even know she was sick, I said.

No one did, not even her, she said.

She simply collapsed; alive one second, dead by the time she hit the floor. No warning, no symptoms. It was like she—and her family—got blindsided by a car called cancer. It was inside her, everywhere, engulfing her from the inside out.

***

After just about everything had been done, every last resort explored and found insufficient, after five years my mother finally knew (this was before the pain, the real pain, commenced). Even while we were still lying to her, she ultimately could no longer lie to herself. Her body told her, and her grandchildren—who did not yet know how to lie—told her. The kids could sense it, and when she saw she was boring her granddaughter, that was a sign. When she realized she was scaring her granddaughter, the one she helped raise, the one whose diapers she had changed, the one for whom she could not buy enough toys or treats, the one she secretly (and not-so-secretly) loved as much as her own children, when she saw the fear in her granddaughter’s eyes, she knew.

 

***

Generally speaking, illness is cathartic. Even the worst stomach flu is tolerable because we know however awful it feels, it’s temporary. In fact, as the worst symptoms ensue you can take a curious comfort, knowing it can’t get worse. It follows patterns, borders, and you can almost predict the course it will take. Then, as you gradually begin to improve it becomes slightly intoxicating: the nasal drip that made it hard to swallow and difficult to sleep now congealed and coughed up, expired demons exorcised from your system. Your vitality stumbles back, like an eager baby learning to walk, and eventually, you’re yourself again.

With terminal cancer there is no improvement, and each time you confront the worst possible symptoms, there are always more on offer, a never-ending supply promising agonies you could not have previously imagined.

 

ii.

What does it say about me that I offer nothing but praise for the folks who helped facilitate the death of my dog?

Euthanize –vb: to kill painlessly, especially to relieve suffering from an incurable illness.

Euthanizing a dog (putting it to sleep, we say) is seldom a dilemma. It’s heartbreaking, certainly, but few people will tolerate seeing a helpless creature with no hope of recovery. However complicated it feels playing God when the decision has to be made, many of us believe it’s the least we can do for companions who loved us so well. There is a discernible solace to be found in the act of holding them as they close their eyes for the final time. I understood, from the first day I brought him home, that my dog was going to die. I understand that every being that draws breath will one day cease to do so. There is so much anguish we can do so little to improve it becomes a surreal blessing, exerting some measure of control, replacing pain with peace.

 

iii.

To hear some people tell it, angels are all around us. Lincoln spoke about the better angels of our nature, but these people believe actual angels are guiding our lives, their handiwork resulting in what we can only call miracles.

It is certainly an enchanting notion: our loved ones looking down from heaven, intervening on God’s orders, helping us do what we can’t do for ourselves.

We see evidence each day of the ways our fellow human beings make concepts like angels, heaven, and even hell seem like the only sensible remedy for the evils we inflict. Even if, guided by angels or their influence over our natures, we established a better way to exist, we would still have inexorable setbacks like illness and death—the sorts of circumstances that practically compel divine exegesis.

 

iv.

What does it say about me that I offer nothing but praise for the people who helped expedite the death of my mother? More, the people were paid to provide their services. More still, I think anyone should consider themselves fortunate to have a similar experience.

Listen: for a country that prides itself on doing so many things so well, America does not handle the process of dying with any particular aplomb. In fact, we are decidedly inadequate when it comes to confronting death, much less helping to expedite it.

At times we need help when we can’t count on ourselves. All too often our medical and religious institutions are ill-equipped to extend the very things they purport to provide.

 

v.

When we are faced with an impossible situations, we can’t afford to rely on angels we’re unable to see. No miracles are necessary since there are those amongst us who provide the support, comfort and grace many of us would pray for.

Hospice nurses are angels of death, which is to say, they perform the sorts of services God’s envoys usually get credit for.

When you or someone you love is confronting a death that will be neither quick nor painless, these ordinary angels are the best hope you have. When even the most compassionate doctors and priests are unable to offer more than kind words and empty promises, hospice nurses do more for us than we can do for ourselves. And that is as close to a real miracle as we can expect to encounter in this world.

*excerpted from a memoir entitled Please Talk About Me When I’m Gone.

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Ars Moriendi, Part Two: Hippocrates and Hypocrites*

Part One considered the “before” of end-of-life care (and once again, Bill Keller’s piece is recommended reading: check it here), and this excerpt (from Keller, then me) deals with the “during”, and the unanticipated, if revealing way many doctors handle things when they are the ones getting the grim diagnosis.

Terminal illness –and how best to process it– is not remotely an easy to discuss, describe or resolve dilemma. The primary issue, it seems to me, boils down to awareness (which, come to think of it, applies to virtually every situation): it might be easy to blame the doctors or the system, or even the families, but we are currently ill-equipped to have open, honest discussions about treatment options vs. realistic scenarios, and in America especially, our one-two punch of denial and deference to authority leads to many well-intended instances where pain and suffering is prolonged in the name of hope. Keller’s article indicates we can learn a lot from our brethren across the pond, where humane and mature solutions are not met with hysterical screams of ‘death panels’ and the like…

But the hospital that treated him offers a protocol called the Liverpool Care Pathway for the Dying Patient, which was conceived in the 90s at a Liverpool cancer facility as a more humane alternative to the frantic end-of-life assault of desperate measures. “The Hippocratic oath just drives clinicians toward constantly treating the patient, right until the moment they die,” said Sir Thomas Hughes-Hallett, who was until recently the chief executive of the center where the protocol was designed. English doctors, he said, tell a joke about this imperative: “Why in Ireland do they put screws in coffins? To keep the doctors out.”

The Liverpool Pathway brings many of the practices of hospice care into a hospital setting, where it can reach many more patients approaching death. “It’s not about hastening death,” Sir Thomas told me. “It’s about recognizing that someone is dying, and giving them choices. Do you want an oxygen mask over your face? Or would you like to kiss your wife?”

Anthony Gilbey’s doctors concluded that it was pointless to prolong a life that was very near the end, and that had been increasingly consumed by pain, immobility, incontinence, depression and creeping dementia. The patient and his family concurred.

And so the hospital unplugged his insulin and antibiotics, disconnected his intravenous nourishment and hydration, leaving only a drip to keep pain and nausea at bay. The earlier bustle of oxygen masks and thermometers and blood-pressure sleeves and pulse-taking ceased. Nurses wheeled him away from the wheezing, beeping machinery of intensive care to a quiet room to await his move to “the other side.”

 ***

Doctors talking about death are not unlike priests describing the horrors of hell: there is the air of presumptive jurisdiction, but also an aloof conviction, almost pitying, that affirms it’s not a place (death, hell) they’ll ever find themselves. We cannot despise them for this: without these affectations that eventually become ingrained, they could not conceivably perform their functions. Their comportment suggests that they have seen many of the things we pray to avoid, and have become intimate with horrors we can hardly imagine. In order to acclimate, they must first fortify themselves.

Physician, heal thyself?

It is understandable that so many of us assume doctors, who have more of everything—knowledge, money, connections—are able to take care of each other in ways their patients cannot conceive. If this were indeed the case it would be comforting in a way. At least we would have irrefutable evidence that solutions do exist and we might look forward to one day employing them ourselves.

But the reality, if less polemical, is nevertheless enlightening. According to a growing field of first-hand testimonials, doctors do in fact tend to die differently, but not as a result of special or preferential treatment. The ultimate, paradoxical disparity lies in an intentional demurral of treatment. Less last-ditch cycles of chemotherapy or illusions of a few extra months—itself a proposition that begs the complicated question: does more time with more adversity (physical if not mental) seem in any way appealing?

This phenomenon, which could simply and accurately be described as acceptance, illustrates several things. The most revealing might be the consequence that doctors see enough avoidable anguish they are disinclined to die in denial when their own diagnoses stare back at them in black and white. Aware of how little can be done, and able to measure the difference between best intentions and bottom lines, some prepare accordingly. In the process, perhaps they are able to provide a measure of peace—and not the opposite—for themselves and their families.

*excerpted from a memoir entitled Please Talk About Me When I’m Gone.

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Ars Moriendi, Part One: The Conversation*

Writing in the New York Times on October 7, Bill Keller’s touching essay “How To Die” confirms a regrettably consistent reality regarding end-of-life care (the before, during and after of how we die): opinions about it, indeed cognizance of it, is often limited to those who have had direct experience with a loved one’s struggle.

As many friends and readers of this blog know, I have direct experience with such a struggle: my mother’s ultimately losing battle with colon cancer, a disease that took her life just over ten years ago.

As many friends and readers of this blog know, I’ve spent the last couple of years working on a memoir entitled Please Talk About Me When I’m Gone. While this project is an attempt to commemorate –and celebrate– my mother’s life, it also concerns itself with the often uneasy interstices that comprise the before, during and after of how we die. More, it is a (hopefully, sufficiently subtle) call to arms, a (hopefully, sufficiently humble) petition to combine insight and compassion for collectively waging a more effective assault on this –and by extension any– disease. More still, it might function as a (hopefully, sufficiently altruistic) j’accuse documenting all the things my family and I struggled against: ignorance, apathy, lack of understanding, etc. The essence of the story –the essence of any good story, the imperative of art– is to share perception and accrue knowledge, admit what you did not know to help someone else recognize what they should learn, and communicate awareness through empathy.

I strongly recommend reading Keller’s piece, because it is short, not-so-sweet, yet appropriately matter-of-fact. Here is the crux of this tale’s “before”, the dilemma (how, when?) that patients and, just as often, their desperate families confront:

When they told my father-in-law the hospital had done all it could, that was not, in the strictest sense, true. There was nothing the doctors could do about the large, inoperable tumor colonizing his insides. But they could have maintained his failing kidneys by putting him on dialysis. They could have continued pumping insulin to control his diabetes. He wore a pacemaker that kept his heart beating regardless of what else was happening to him, so with aggressive treatment they could — and many hospitals would — have sustained a kind of life for a while.

In my family’s case, we never had the proverbial moment of truth, a benevolent intervention by the professionals who are paid to tell us how and how long. From a chapter entitled “Fairy Tales and Feeding Tubes” (recently posted in full on the site), this awkward confrontation with reality –a situation that arrived when alternatives ceased to exist– is depicted:

She could not have known her life would now be measured in weeks instead of months. None of us knew.

Here’s the thing about acceptance: we all had time to prepare and adapt. My mother, finally, after opening every door and stumbling down every last alley, had no other choice but to accept. Sometimes the choice makes itself when there is nothing left but a choice that will make itself. She finally accepted where we were and what was coming.

Even with the best of intentions we waited too long to bring in hospice. We did not understand that at a certain point even a single day is too long. In shockingly short order, her body had deteriorated to the point of its final betrayal: she could no longer digest food.

“Your body can no longer digest food,” my father said as we all stood around the bed, confronting the moment that, after all denials, medical interventions, and best wishes otherwise have failed, arrives at last. The only comfort is that at least it’s not a doctor telling her; at least she is in her own home.

There is an extended section of the memoir, covering several chapters, that honestly, if unflinchingly describes how we gained the knowledge we now have, and how hard-won it was to acquire. These brief chapters are a bit more didactic, albeit infused with (hopefully, sufficient) artistic import. In some regards, although the impetus throughout is on recounting and exploring the story of one woman’s life (focusing, inevitably, on how it ended), the so-called takeaway –at least in its author’s eyes– is that anyone who encounters this material might be a bit better informed and therefore equipped to do what they can, with kindness and charity, to ease the transition with a minimum of needless suffering.

***

Eventually, we asked: What should we expect?

Well, we can’t know for certain, they said. But at this stage you should probably begin to consider end-of-life options.

And can you point us in the right direction?

Certainly, they said. After all, we literally deal with this every day…

This is a conversation that never occurred, and it’s one entirely too many families won’t get the opportunity to have. Having not had the pleasure, I feel I’m in a safe position to suggest that, tempting though it may be, this predicament cannot necessarily be placed on doctors or even the system. Certainly, some surgeons and oncologists are better equipped than others (on human as well as professional levels) to conduct helpful—or at least honest—discussions regarding options, percentages, and prognoses.

How much time have I got? That is the big one, the most crucial, if feared question each patient eventually, inevitably asks. And if they can’t—or won’t—bring themselves to give voice to the concern that rips like a current through every part of their consciousness, it is up to the family to make the inquiry on their behalf. We didn’t want to know, but we needed to know. We had the right to know, we felt. Questions: Were we prepared to process it, whatever the verdict happened to be? Wouldn’t the doctors tell us, finally, when it was time to confront the final stage? Isn’t it our obligation to provide care and distraction, and let the professionals do what they are taught to do? And so on.

Naturally, there are no definitive answers to any of these questions. Or worse, the answer to each one is—or can be—yes and no. Depending on the patient’s age, or situation, or the doctor’s preference, or competence, or conscience, there is probably never an adequate formula for combining truth with commiseration. Speaking only from personal experience, the worst news you can receive is not the bad news you abhor, but a deferral disguised as an alternative.

When they were unable to successfully operate, in July 2002, we knew it was no longer a matter of if but when. How long have we got, we asked in direct—and especially indirect—ways. It was apparent, then, and even more obvious, now, that the issue was not how much they knew but how much they didn’t know. For all they knew, it could be a year or it could be six months; there could be a miracle, my mother might make medical history. And so, they declined and demurred and filled my parents’ heads with words like “quality of life” and, unbelievably, chemotherapy. My mother, not knowing the truth and my father, not yet wanting to confront it, began to embrace this potential course of action as one last bulwark against the unimaginable. As long as we are in motion, we are still in control: this is what I heard every time I looked at my father’s face. None of us, including the doctors, could know that in little less than a month the most important question would answer itself.

It would be too easy to insist that our doctors were negligent or, at least, woefully indifferent. The reality, I suspect, is even worse than that. Obviously doctors do not want to give false hope or obliterate any remaining optimism, but the rationale for their institutional code of silence may in fact have more to do with us than them. Our country’s capacity for denial is well documented; it is more likely our ever-increasing penchant for litigation that gives them pause. When the going gets tough (and the going is always tough in cancer wards) we pray doctors can perform tasks far beyond their human abilities. Even after the surgery (successful or not) has occurred, we expect these people to become priests, social workers and saints.

Still: you want answers. Aside from comfort and serenity, those are the hardest things to come by when you’re dealing with terminal cancer. No one knows anything and you get the sense that even if they did know—especially if they do know—they are not going to tell you.

*excerpted from a memoir entitled Please Talk About Me When I’m Gone.

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