Beyond Medicine
Be Not Afraid Beyond Medicine
Chapter 10 Beyond Medicine
I have been doing some thinking about my future. I just
saw my doctor on Tuesday morning, and my tumor is
not responding to the stronger medication I'm on. I had
a big operation and then a round of treatments that was
aimed at curing me. It did not work. Now the illness has
recurred. Further treatment could prolong life, but it
cannot cure the disease.
The more I think about it, the more I feel like opting for
no further treatment. It is a most unpleasant experience,
and everything in me balks at the idea of going through
it again. Also, I can't quite face losing my hair a second
time. It is a small point, I know, but a needy one.
In other words, I would like to just live one day at a
time. I know if I hold on to Jesus, he will walk through
this valley of shadows with me. After all, he's been there
himself! I truly believe the words of Job, "I know that my
Redeemer liveth…and though worms destroy this body,
yet in my flesh shall I see God."
Be Not Afraid Beyond Medicine
I know there will be very difficult times, but I want to
turn more to my Heavenly Physician and trust in him
through whatever lies ahead. He knows best how to
heal. He has given me a very full life, and I'm content to
give it over to him now.
Bronwen
When Bronwen, forty-nine, wrote this letter to my wife, lumps were reappearing all over her body, and she knew that nothing more could be done. After years of battling cancer, she was (in her words) "finished" with chemotherapy, and tired of waiting for the next test, the next scan. It wasn't that she was tired of living. She was just ready to move beyond medicine.
To anyone who knew how long Bronwen had fought up till then, her attitude was easy to understand. She wasn't giving up – just acknowledging that her struggle had now shifted to a different plane. And she did this so matter-of-factly that no one was tempted to secondguess her. As she wrote in another letter a few days later, "I have a sense of peace about what lies ahead. You do what you can for as long as you can, but in the end, all that is left is prayer."
Sadly, we live in a culture where a decision like Bronwen's is widely frowned on. Polls show that (at least in the United States), the vast majority of
Be Not Afraid Beyond Medicine
terminally ill people would prefer to die at home, as she did – in her own bed, surrounded by the love of family and friends. But the truth is that most spend their final days in hospitals, attached to tubes and monitors, and
cared for by virtual strangers. And the result is that instead of being able to use their last days looking over their lives – sharing memories, farewelling friends, celebrating the past (or making peace with it) – they spend them in a clinical setting, fending off the inevitable.
The reasons for this are numerous. On the one hand, the remarkable advances made by medical science in the last few decades alone have raised expectations on every front, and among oncologists and other specialists in particular, the desire to demonstrate invincibility is often extremely strong. As an Ivy League medical professor wrote in a recent article in TIME, the "fighter-pilot mentality of success in the face of mortal danger" that is drilled into young doctors leaves far too many of them forgetful of their humanity. "They worship at the shrine of scientific objectivity, and they wrap themselves in a mantle of depersonalization…all in the name of victory over death." No wonder so many find it hard to let go when a dying person insists on relinquishing further treatment – they have been educated never to concede defeat.
Be Not Afraid Beyond Medicine
But that's only one half of the story. The other is those of us whose unrealistic expectations – for just one more surgery, one more experimental protocol – keep the dying from saying what's really on their mind: "Get
me out of this hospital. I want to die at home."
Fear sometimes plays a role, too, on both sides. A hospital, wary of malpractice suits, may prefer to lose a "client" in the midst of a last-ditch effort than let him go home, only to find themselves fighting off grieving relatives who claim the doctor should have done more. And a family – even if they feel they have done everything they could – may still stall at bringing a loved one home to die, because they fear being seen as unwilling to go the extra mile.
As anyone who has ever been involved in end-of-life care will attest, no one set of guidelines could possibly work for everyone. Each human being – even one with exactly the same diagnosis as another – approaches death in his or her own way, and each terminal illness raises its own questions. But it is vital that those questions be honestly and openly addressed.
Sometimes I wonder, for instance, how long the body should be kept alive when it is clear that the soul longs to be released. When the prolonging of life means weeks or months of hospitalization with minimal contact and negligible improvement, we need to be ready to ask ourselves: Are we keeping someone alive for his sake,
Be Not Afraid Beyond Medicine
or for the sake of others who don't want to let him go? Are we trying to uphold an ethical standard, or letting ourselves be pressured into something by someone whose main interest is research?
Moving beyond medicine does not mean belittling its role, or shunning the very real assistance it provides in battling infection or relieving pain. But it does mean taking our focus off injections, pills, and white counts, and training it on the social and spiritual dimensions of dying – things that are ultimately far more important.
When it became clear that Pat, an elderly colleague with a long history of heart disease, didn't have much time left, he and his family decided against hospitalization. Doing this meant going against the advice of several specialists – hospitals always seem to have "just one more thing you could try" up their sleeve. And they'll rarely, if ever, encourage you to take matters into your own hands. But Pat's family did, and didn't regret it, even when he died a few weeks later: "We could all be right there, including the youngest grandchildren. It would have been a waste of precious time for him to spend those last days away from home, in some hospital."
Tina, a woman who died at home, made little use of the medical help she had access to, especially toward
Be Not Afraid Beyond Medicine
the end. It wasn't a matter of principles: in the last stages of breast cancer, she was heavily dependent on painkillers and accepted palliative care. But she insisted that dying was a family matter, and did what
she could to prevent it from being medicalized. As a nurse recalls:
Once it was clear to Tina that she was really going to die,
she made a concerted effort to stay clear of everything
but the basics. She wasn't rude about it, but she was
adamant: "If I'm going to die anyway, there's no point
in coming to the doctor's office, or having blood drawn,
or being weighed, or anything like that. The important
thing is that I'm comfortable enough to live."
Refusing to stay in bed, even when nauseated and
weak, she dragged herself to work (a desk job near her
house) as often as she could. "I'm not dying of cancer,"
she said. "I'm living with it."
Near the end Tina dismissed her home-care nurses, saying her family could care for her as well as anyone else. And they did – right to her last breath. I don't believe there was one nurse or doctor present when she went.
Moving beyond medicine does not always mean moving toward death. In fact, I have even seen the
Be Not Afraid Beyond Medicine
opposite to be true, as with Hardy, an uncle whose last years remind me of an old truth: only when man gives up and lays aside his arms can God step in and take up the fight.
My father's eldest brother, Hardy suffered from heart disease and diabetes for many years. In September 1984 he underwent cardiac bypass surgery; in November of the same year his heart failed. Hospitalized, he asked to be released and cared for at home. In early December his blood pressure was dangerously low. At times he was restless or distressed; at other times very peaceful. During moments like these, one felt the closeness of eternity in his room. Once he said, quite simply, "You know, I am dying."
Hardy needed intravenous medications to maintain his blood pressure, and oxygen to relieve his breathing difficulties and chest pain. One day, however, he surprised everyone by trying to pull out the IV. He was ready to die, he said, though just as ready to live. He was ready for whatever God had in mind for him. We called his doctor and discussed the situation at length, then hesitantly agreed to have the IV discontinued. We believed that without the medication, Hardy would not live much longer, and he knew this. It would be a step of faith, but we were ready for anything. Most important, Hardy was.
Be Not Afraid Beyond Medicine
As his nurse removed the IV, Hardy motioned him to bend over, and gave him a kiss. Miraculously, Hardy survived the next days, gaining new strength daily. Over the next weeks and months he improved even
further, resuming his formerly active schedule and even making several long journeys, including one to Europe. Three years later, his heart failed and he died.
It was just as his mother, my grandmother Emmy Arnold, had once written: "Sometimes before death there is a flaring up of life, so much so that one's hopes for recovery revive. It is like a bright autumn before a long, cold winter. And afterward comes spring: resurrection."