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.
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.
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.
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.
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.
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.