Care At The End Of Life – Chuck Rush 3/22/15

Atul Gawande, who teaches surgery at Harvard Medical school and writes for the New Yorker, walked his father through the last chapter of his life.
His father was also a surgeon and a few years ago he had some tingling in his hands, didn’t think much about it until it got worse and he started having neck pain and couldn’t sleep easily at night, and he started having trouble finding the loop in his sutures.
He went for an MRI. The image, which they could download on their laptops, showed a tumor growing inside his spine from the base of the brain down to the base of the shoulder blades. It had obliterated enough of the chord that it was surprising that he wasn’t numb and paralyzed.
It was a very rare occurrence. As they sat there, neither father or son could actually figure out how something like that could be operated on. So they did the next best thing and called a neurosurgeon at Harvard and another at the Cleveland Clinic. Less that a dozen cases like this had been treated.
They go to the first neurosurgeon in Boston, who tells them that he would operate right away, that left untreated he could become quadriplegic in a matter of weeks. There were risks to the surgery, and he wouldn’t actually be able to eradicate the tumor, just shrink it or decompress it. It had the immediate effect of filling the room with fear.
They fly to Cleveland, where they get a more ambiguous picture. Tumors like these, says the doctor, can grow quickly but they can also stay the same for a very long time and that he should experience this list of symptoms in this order if it starts growing again. The physician thought that the chances of becoming quadrapelegic were about 1 in 4. He told them that he could operate now or wait until the symptoms increased.
These are the two best options from the two top experts. What do you do?
It is interesting that even these two doctors, who are pretty expert in their own fields of medicine, couldn’t really understand how such a surgery would exactly work and how they would address complications. They were only degrees better informed than any of us would be.
An informed answer to this question, as it turns out, is not simply medical. It is also emotional and spiritual. It is a question that you answer in light of your values and your immediate goals, your fears and trying to sort out what you can live with and what you want to avoid at all costs.
Atul remembered the way that he has seen this change in his patients over the year as their perspective has changed. And that perspective was the consequence of how long they perceived they had to live. All of us when we are young, spend time networking, building a career and a reputation, searching for a mate and friends.
But as one of them put it, remembering her encounter with a life threatening illness, “When I looked at what was important to me, very different things mattered.”
Ambition and vanity quickly recede to the backdrop. People matter. Comfort and companionship matter.
And the other thing that Atul learned through watching his father go through this ordeal was that people in terminal situations have modest goals that can be achieved. Up until recently, we hadn’t really bothered to stop and ask people about those. Simple things that can be achieved.
If we are lucky enough to live a full complement of years and most of us will, we face an ever shrinking range of options that are under our control but we can achieve them.
Atul’s father decided against immediate surgery. He waited until the symptoms progressed. And that doctor turned out to be right. Did he pick that option because it was the more optimistic one? Less fear inducing? It is hard to know.
It made him more intentionally reflective. He decided to stop practicing medicine, visited his grandchildren more often, planned an extra trip back to India to see his family, and he got more involved in making sure that the college he started outside his home village would carry on for the future.
In short, he started to subconsciously solidify his loyalties. Who is important to you that you want to spend time with? What is it that you want to outlive you that you are investing your energy in?
That is a good window in to your values, what you stand for, what you are about.
Months went by. Eventually his symptoms worsened. He called his son, the physician. Perhaps we should have that surgery now.
His son decided to have the harder talk with his Dad. After surgery, what are your goals? He asked his Dad. His dad wanted to finish his volunteer work on the college in India and he wanted to visit it if he could.
What are you willing to trade-off? He asked him. Patients will surprise you with their answers. For some being able to watch TV would be enough, if the surgery didn’t turn out the way they’d hoped.
His Dad said that would not be enough for him. He needed to interact with people. More than anything, he just didn’t want to become quadrapalegic and have other people have to take total care of him. He needed to be in charge of his world and his live. Imagine a Surgeon, the quarterback of the team, saying something like that?
He didn’t want to be intubated. He didn’t want feeding tubes. Dr. Gawande said he posed those questions to his father in great fear, perhaps that they would cause anger in his Father or his Mother, perhaps depression. What they actually produced when he asked them, was clarity and relief…
They decided to do the surgery and went to the Cleveland Clinic. They are in the waiting area, about an hour into the surgery, and the chief surgeon came out. His dad was having heart issues. The doctor could stop or proceed.
What should he do? Atul remembered what his father had told him that he was more worried about becoming a quadrapalegic than dying, so he asked the Doctor, ‘What will decrease his chances of becoming quadrapalegic, stopping the surgery or proceeding with it?’ It was a good question. It reflected the fact that his father was less concerned with dying than with being a burden on others and it was a question that the Doctor could answer.
The Doctor went back into surgery, higher chance of death but less chance of being paralyzed.
He made it through the surgery, no loss of sensation, no damage to his heart which was a big relief. The tumor was a relatively slow growing cancer. It could be treated with chemotherapy and radiation. The Doctors recommended it. These treatments could not stop the cancer but they could slow it down.
He reflected on these options and decided to forgo chemotherapy as making him too weak for the benefits that it would provide and he opted to go have radiation treatments because they were limited to six treatments over six weeks.
Turned out there were a lot of side effects from the radiation treatments. He got stabbing back spasms, a real pain in his throat, low level nausea and he lost his sense of taste, so he had no desire to eat. He lost 23 pounds, had a ringing in his ears, and was subject to vertigo, and numbness in parts of his body. And the drugs that they put him on to treat some symptoms caused him to hallucinate, not pleasant.
To boot, the tumor kept on growing anyway. Atul’s Mother was angry that the treatments did not bring the promised results. His father was just silent, almost resigned. And he changed the subject. He wanted to know about his grandchildren. His horizons were narrowing, his loyalties more focused.
The oncologist was suggesting that he do a round of chemotherapy and she laid out options with statistics next to each of them that were dizzying enough that even two Dr.’s had a hard time understanding them.
Perhaps because he was a physician, he had the presence of mind to also ask, ‘what if I do nothing?’ And the doctor described a list of symptoms of failing health.
Atul had the presence of mind to ask, “what is the range of time that you have seen on cases like this, the shortest time you’ve seen someone live and the longest.” The doctor became squirmy. It is a question they don’t like to have to answer. “3 months on the short end and 3 years on the other end.”
And he followed up with another good question, knowing that the side effects of chemotherapy would diminish the values that his father had already described, wanting to be conversant with those he loved. He asked,” how would the chemotherapy treatments change the time span?” And the doctor said, it wouldn’t but it would push it towards the longer end towards 3 years.
“Now he was torn between living the best he could with what he had versus sacrificing the life he had left for a murky chance of time later.
“… In the old days, the decision was simpler, you just too the most aggressive treatment available and the only thing we generally feared was doing too little. Today it is not so clear, even as we have more and more options.
Then he started falling at home and the EMT’s were even called. Atul could see his father was becoming progressively more paralyzed. At one point, his mother suggested that he start the chemo. “No” was all he said. He had too many side effects now. How should they take care of him given that he was not fixable?
Atul’s mother was also a physician and he said that between the three of them, they had 120 years of medical practice, and how to proceed eluded them.
Finally, his father called in hospice. And Atul called a local agency that was much like SAGE in our area, providing services for the elderly and the infirm, only theirs did even more things than SAGE does.
A hospice social worker came over, told them what medicare would cover with hospice, a physician, medications, nursing emergency support by phone, a health aide to stop over and clean him up regularly and help organize what he needed, chaplain and he could quite it at any time.
She turned and asked him what his concerns were. And he said he wanted to stay strong while he could, to type and email and Skype with his family. And he didn’t want pain.
His range of options were decreasing again, as he was in a wheel chair more and more so he wouldn’t fall. But he was living for the best possible day instead of sacrificing time not for time later.
Atul was asked to give the graduation speech in his Father’s hometown at Ohio State University. Big honor and his father really rallied for that day. They set it all up so that his dad could be wheeled in up front so he could see the speech up close. A couple months go by and the day comes for the speech. They wheel his father into the college auditorium. His dad had them stop. He got out of the chair and walked up to his seat. I love that part because it is astonishing how people at the very end of life can rally one time for something that is worth it.
Atul says that he has realized the importance of courage to act, to shape our stories, within narrower and narrower confines. (243) He learned we need to pay attention to the priorities that people have, the values that are more important than simply being safe and living longer.
Today, we have the technical ability to inadvertently prolong people’s suffering. We can inadvertently shorten the valued part of living, when the things we value are compromised or we are not able to engage those we are loyal to. Our goal is to try to have a good life, as Jesus might say, an abundant life, as close to the very end as possible.
He notes that in the states that allow people to get a prescription for a lethal dose of drugs in extreme cases, only about half of the people that get the perscriptions actually use them. It seems to be the case that just having the control of that option is what they really want.
As we come near to the end. “People want to share memories, pass on wisdom and keepsakes. They want to settle relationships, establish their legacies, and make peace with God and ensure that thos who are left behind will be okay. They want to end their stories on their own terms.
Whenever we can, we need to facilitate that with them.
Atul’s father remained active. He had dinner parties he attended, sent a dozen emails a day, enjoyed Wimbledon as a tennis player. His daughter even brought home a boy for him to meet, a serious boy that bowled him over with happiness.
Then his email started to be scrambled. He got confused. His world was closing in. His mother called one morning. He was breathing but not waking up. The EMT’s came and they wanted to put him on a ventilator.
Awful decision for his wife to have to make. Even though she knew that he was failing, it all seemed a little too fast and she wasn’t ready to make a decision. She called her son and finally told them ‘No’.
And then, as these things go, he woke up. And when he woke up, he wanted to be discharged to go home. Despite his complications, he asked for favorite foods from his youth. He called his grandchildren. He sorted through photos.
A couple of days later, he was taking in the beauty of the afternoon, and he said to his wife. “I don’t want to prolong this process. When they asked him more about he said that he wanted to be at peace. And he drifted between being awake and sleeping deeper and deeper, his breathing stopping from time to time.
And finally he stopped.

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Once, when Jesus was in one of the cities, there was a man covered with leprosy. When he saw Jesus, he bowed with his face to the ground and begged him, “Lord if you choose, you can make me clean.” Immediately the leprosy left him. And he ordered him to tell no one. “Go,” he said, “and show yourself to the priest, and as Moses commanded, make an offering for your cleansing as a testimony to them.” But now more than ever the word about Jesus spread abroad; many crowds would gather to hear him and to be cured of their diseases. But he would withdraw to deserted places to pray.

Barbara Brown Taylor in her book, An Altar in the World, tells a story about a time when she was guest preaching at an Episcopal church in the south. She arrives early to check out the sanctuary & get settled in. She immediately noticed that behind the altar there was a striking mural of the resurrected Jesus, stepping out of the tomb. After greeting a member of the altar guild, a manicured and proper southern lady, Barbara walks up behind the altar to get a closer look at the mural. She says that Jesus looked “as limber as a ballet dancer with his arms raised in blessing…except for the white cloth swaddling his waist, Jesus was naked. His skin was the color of a pink rose. His limbs were flooded with light.”
Barbara felt protective over Jesus with so much skin showing, he is all exposed in such a public place. She recognized the beauty in this painting that in Jesus' moment of transcendence, he remained human, he came back wearing skin. But then she also quickly noticed that something was missing, the wounds in his hands and feet were apparent – though not grotesque. His arms were thin but strong, but then staring at his underarms, she noticed - that Jesus had no body hair! “Beautiful, isn't it?” asked the woman who was polishing the silver. “It surely is that,” Barbara said, “ but did you ever notice that he has no body hair? He has the underarms of a six-year-old and his chest is a smooth as a peach.” And the woman shrank in awkwardness. “Uh, no, um, wow…” she said.

This may or may not have sent me on a Google hunt to find a picture of a hairy Jesus, but alas, in the collective Christian imagination, Jesus is really into hygiene. Seriously though in a majority of these portraits, Jesus skin is silky and “rosey” and white and “hair free.”

And this perfectly manicured Jesus is problematic especially when I imagine Jesus in our gospel reading today. First of all - let's get something straight up front, Jesus was not fair-skinned, which is another sermon for another day. Second of all Jesus most certainly did not have access to spa treatments, sunscreen, or a personal trainer. I mean seriously though it looks like he baths in milk and does mint julep masks every day! And yes, Jesus was crucified, but he looked damn good doing it! The reality is that Jesus was a poor drifter teacher who trudged around in dirt and grim and touched lepers. And who knows, Jesus may have even been uglier or fatter or shorter or grey-haired or balding than our perfect-bodied Jesus! Why would that be such a scandal?

It would be a scandal - because we are generally uncomfortable with our own bodies – we decided to manicure Jesus' body and make it perfect to make us feel a little more at ease about the imperfections and struggles in our own bodies.

So Jesus' messy body – with smelly feet and bad breath and hunger and pain and a couple grey hairs – one day in his travels encounters a man who's body is covered in leprosy. And the man's frail and weak body covered with open wounds throws himself on the dirt ground at Jesus' feet in desperation. And Jesus heals him and restores him to his community. And I need Jesus to have a messy, real body in this scene. Because imagining the rosy pink flesh that is unblemished and perfect touching the broken body of the leper with open wounds just doesn't do it for me. “Rosey-skinned”

And perfect bodied Jesus doesn't fit in this story for two reasons:

1) Jesus' body certainly stands in contrast to our leper friend. The leper's flesh is rotting and open to infection, while Jesus' skin is shiny and new. If Jesus' body in our cultural imagination is perfect, unblemished, without warts or bad breath or hangnails, then we can hold his body at a bit of a distance. And the reverse is also true, Jesus can hold our bodies at a bit of a distance – and he would hold the body of a man with leprosy at a distance.

2) Leprosy is contagious, physically and socially – by touching this man, Jesus risks, pain, brokenness, loss of feeling, loss of limb, being socially ostracized. So when Jesus' body touches this leper – he risks being contaminated with this curse – this social and physical death. He puts his body on the line. And to top it off Jesus risks his own religious authority – if he contracts leprosy, everyone will think that it is his fault- that he deserves this suffering because he has sinned.

And so rosey-skinned-unblemished-no-body-hair-Jesus just doesn't do it for me in this scene. He is too ethereal, too perfect to risk touching a leper. The rosey-skinned Jesus has a special body and he can stand apart from us – he doesn't really get what it's like to be human. The Jesus with body hair, he is on our team, he is vulnerable, he touches lepers. He has skin in the game. He is moved with pity to touch a man who is untouchable.

But here is where the rubber hits the road, (START SLIDESHOW) just like the portrait of Jesus' perfect body we idealize the perfect human body now more than ever, and our relationships with our bodies are so complicated and loaded that we often cope by ignoring our bodies until they scream at us for attention.

Think about the struggles that land in our bodies: Struggles in our sex lives, with body image, with our relationship to food, our ability to balance rest and work, our relationship with other people's bodies, bodies that don't fit quite so easily into nice categories. We have an insidious cultural habit of demeaning and objectifying bodies in order to sell perfume. And don't get me wrong the Christian church has been the worst, trying to control our sexuality, and creating negative images of our bodies to suppress and oppress certain people with shame.

All of these complications and struggles divorce us from our bodies. Like the leper our bodies are fraught with illness – we are the most addicted, overweight, prescribed adult cohort in human history. These sacred vessels created in God's image are at risk of being subsumed by the quest for the “perfect body.” This dichotomy between our own body and the perfect body - divorce us from our bodies – suppress the beauty that we already are for some ideal or we ignore our bodies because they are loaded with shame

So here's the deal – This leper story is a story about isolation. This man is divorced from his own body, and kicked out of his religious, social and familial support system to battle this disease alone. And to top it off he is isolated from God, in their cultural context, this disease is proof that he has sinned before God and is therefore paying penance for his sins in suffering. So this man is left utterly isolated.

Jesus' miracle here is that he restores this man to his own body. When you have leprosy you lose sensation – you lose your connection to your nerves, which can eventually cause loss of limb. And so when Jesus heals him – he now is restored to his own body. This man is also restored unto his community, and they can now begin tending to the wounds of his soul from the pain of social isolation.

Like the leper we need Jesus to restore us to our own bodies and to restore us to authentic communities that can help us heal.

Why are people cast out in our society because of their bodies? Maybe they are too fat, too thin, too old or too young. Maybe they happen to love the “wrong body.” People are isolated because they are differently-abled, or their bodies carry the weight of illness or chronic struggles. We carry shame around in our bodies, not just eating disorders and a distorted idea of what “healthy” bodies look like but the general feeling that we are unaware of our bodies and our connection to God through them.

When we affirm Jesus' imperfect skin, we also need to affirm our own sacred skin. How does our culture try to divorce us from our own bodies? How do we lose touch with the sacred goodness of each unique body that is created in God's image, with one uniform and oppressive definition of “healthy” and “beautiful?”

Here me now when I say, “you are a person of beauty and worth, created in God's image.” How does that mantra change us? How can we develop rituals to remind ourselves of the sacred connection of our bodies and souls and minds? What does cherishing and affirming your body look like for you? Is it a yoga practice or a sport? A good bath, a long walk? Is it a nap or a morning routine?

Jesus says, “This is my body – broken for you”

Jesus body was broken

Our bodies are broken

And yet we celebrate them today as a place of sacredness – that God calls “GOOD.”

A beautiful miraculous gift – these things that we walk around in

These bodies that heal and breathe and walk and sing and dance

These bodies are our spiritual homes

May we gather in communion today with this mantra

“I am a person of beauty and worth – created in God's image”

And may that mantra heal us and draw us into communion with God and each other.

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