October 14, 2014 — Hospice and the Elephant in the Living Room

OK, this is something of a grim subject. But it need not be.

The subject is conversations about dying and end-of-life care. I’m writing, now, more as a pastor than as a cancer survivor reflecting on my own situation. (Thankfully, my health has been good, and there’s been no sign of recurring lymphoma.) My wife, Claire, is a minister who’s worked for more than 15 years in hospice ministry, so this is a subject that does come up at the dinner table from time to time.

I’ve seen a number of moving news articles on this subject recently.

Atul Gawande has written in the New York Times, summarizing the goal of palliative care in hospice programs as providing patients with “the best possible day.” Hospice has got that wonderful here-and-now focus. Not tomorrow. Not next week. But today. Carpe diem.

Nina Bernstein has written in that same newspaper about a situation in which offering a patient the best possible day seemed to be the last thing on medical caregivers’ minds. She tells the story of Maureen Stefanides, who worked without letup to find a way to get her dying father, Joseph Andrey, out of a nursing home and back to her home so he could die with dignity. Tragically, a web of competing health and financial regulations — coupled with a shortage of home-care nurses and aides (a singularly low-salary occupation) in high-rolling New York City — made that impossible. As it was, the poor man was simply falling apart with multiple age-related issues, and no one seemed willing to stop the aggressive-treatment train. Stopping it in his case was all the more difficult because the nursing home stood to lose profits if they discharged him to home hospice care. (“The nursing home collect[ed] $682.48 a day from Medicare, about five times the cost of a day of home care.”) There’s really got to be a better way to run a healthcare system.

In Ms. Bernstein’s case, talking about hospice care was not the issue, but for many families it’s the proverbial elephant in the living room. Family members tiptoe around the subject, thinking it’s important to keep a relentlessly positive attitude, fearing that if their loved one knew he or she were “terminal,” the terminus would arrive all the sooner. In reality, the sick person is likely very aware of the imminent end, and may have strong feelings about what sort of end-of-life care is the best. Yet, on their side, seriously-ill patients sometimes hesitate to raise the subject with their families, out of deference to their feelings. Such “after you, Alphonse” hesitation often leads to an unwanted final few days in a medically-invasive intensive-care unit.

An article about President Obama’s recent signing of the Impact Act, which will lead to greater Federal scrutiny of hospice programs, observes that “The median length of stay for hospice patients in recent years has been fewer than 20 days — probably much too short, in many cases — so a hospice that provides six months’ care for half its patients is a true outlier.” Claire has shared, from her experience in hospice chaplaincy and bereavement support, that a shockingly large number of patients in her program live less than 48 hours after their admission to the program. This has nothing to do with the quality of care; it's just that so many patients aren't even recommended for hospice until they're just days (sometimes hours) from the end. I’m told hospice team members have a name for that sort of patient: “on and gones” - as in "on the program and gone." In some cases, the program barely has an opportunity to provide any of their excellent services, because the patient doesn’t live long enough to receive them.

The heightened Federal regulation is important, because there’s been a proliferation of for-profit hospice programs, taking advantage of Medicare payment policies that can make palliative care financially lucrative for the providers, especially if they can pick and choose which cases they accept. Some of these for-profit programs are heavy on the marketing and light on the services provided. Claire works for a non-profit program associated with our local hospital system. They have a lower profile but provide better, more comprehensive services than some of the for-profits.

A few years ago, Sarah Palin got the whole nation into a fit of agita over her made-up “death panels” campaign issue. I think this is one of the most reprehensible things any politician has ever done, because the government’s failure to work the end-of-life conversation into Medicare payment regulations has led to a great many patients missing out on hospice care they would have very much wanted. Political opportunism at its worst.  For shame.

Too many patients today are paying a heavy cost for her death-panels diversion.

We’ve simply got to find a better way, as a society, to talk about this particular elephant in the living room.

September 3, 2014 — Go On In, You’re Surrounded

I ran across an article today that made me think. Here’s Mike Di Ionno, a columnist for the Newark Star-Ledger, reflecting on the experience of his brother, Paul, who died of a rare cancer:

“I don’t know what’s worse, the cancer or the loneliness,” he said. “Because at night, when Lolly (his wife) kisses me on the forehead and puts me to bed and turns out the light, it’s just me and this disease. When I leave the doctor’s office, it’s just me and the cancer. When people visit, they leave and then it’s just me and the disease.”

There is something isolating about the experience of cancer — or, I suppose, any serious illness. If you catch a cold, there are plenty of people who can commiserate with you about the runny nose, the sore throat and all the familiar symptoms. Everyone knows what it’s like to have a cold. Talking about those symptoms with someone else is an exercise in community.

Not so with cancer. The majority of the people you meet have never had it — or, if they’ve had some other form of cancer, their symptoms can easily be very different from your own. Sitting in the chemo chair, you look around and realize that only the people reclining in the other chairs have the slightest idea of how it feels. Not even the nurses, who pump that goop into people’s veins every day, know how it feels.

But there’s some consolation, as Mike Di Ionno points out. There are people — a very small number of people — who hang in there with you. They can’t sympathize, because they haven’t been through it. But they do their best to empathize:

“I have learned that the obituary words ‘surrounded by family’ are the most beautiful phrase in this newspaper. It is the only thing that eases the loneliness of the disease. It comforts, when medicine fails.”

Some good advice for all of us, when a friend or family member has cancer:

“When someone is in the final stages, we all feel helpless and uncomfortable, and worry about being intrusive on private pain and grief.

We ask, ‘What can we do?’

My answer today is, ‘Show up.’

Show up and hold their hand. Show up and say the things you’ll regret not saying, even if they are whispered in the ear of a comatose person. Leave nothing unsaid. Leave nothing unsaid.

Show up in person, call on the phone. Prove to them they were loved and that they mattered.”

Here endeth the lesson. Amen.

June 25, 2014 — Comfort In, Kvetch Out

A friend shared an article with me the other day that contains a piece of advice that’s so practical - so downright sensible - it seems incredible no one has thought it up sooner.

It comes from a newspaper article that’s about a year old. In a Los Angeles Times article, "How not to say the wrong thing," April 7, 2013, co-authors Susan Silk and Barry Goldman address the age-old question, “What do you say to somebody who’s sick?

To understand the advice, you have to conjure up a simple diagram composed of concentric circles with a dot in the middle. The dot is the sick person. The first circle around the sick person is the sick person’s closest relative — a spouse, a parent, a child. The next is other immediate family. Then comes extended family. After that, friends. Then, close co-workers. Then, people in the next office who nod hello to them at the water cooler. Keep drawing circles until you work down to the level of casual acquaintances.

The categories associated with one person may be a bit different than for another. Some people are closer to their best friends than to their family. It’s not so much the labels on the circles that are so brilliant, as what you do with them.

After you’ve plotted your own location on one of the circles, take a look at those who are closer to the patient than you. Then, turn around and observe those who are not so closely connected as you are.

The Comfort In, Kvetch Out rule is this: When you turn towards those who are closer to the patient than you, what you say should be words of comfort. When you turn towards those who are in a less intimate relationship than you, then you can feel free to kvetch — to complain about how bad your friend’s or relative’s illness makes you feel, or how it inconveniences you.

We all need to kvetch from time to time. The art is in deciding who we kvetch to. If our kvetching is directed outwards, that’s fine. If it’s inwards, it can be a burden to those who are already carrying more burdens than we are.

The most important person in the system — the patient — is allowed to kvetch 100% of the time,  no questions asked. As for the communications they receive from others, the goal is 100% comfort.

From the article:

“When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, ‘I’m sorry’ or ‘This must really be hard for you’ or ‘Can I bring you a pot roast?’ Don't say, ‘You should hear what happened to me’ or ‘Here’s what I would do if I were you.’ And don’t say, ‘This is really bringing me down.’

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It's a perfectly normal response. Just do it to someone in a bigger ring. You comfort people in the smaller rings. You kvetch to people in the larger rings.”

One important take-away from the article is that advice-giving is a variety of kvetching. You may think you’re helping the person in the smaller ring, but you’re not. Most of the time, advice-giving is more about meeting the needs of the advice-giver than it is about genuinely helping the advice-receiver.

Very likely, what the person in the smaller ring yearns to receive from you, far more than advice, is listening. Listening is one of the most important forms of comfort.

Comfort in. Kvetch out. Not a bad little rule, don’t you think?

April 2, 2013 – By Name

Episcopal Rector Gary Jones, a fellow cancer survivor, writes of a recent visit to his oncologist’s office that revealed to him a little bit of Easter.

Gary hadn’t been to the office for some time, and looked quite a bit different from when he had been going there regularly for his chemo treatments. His hair had come back, for one, but he also knew he looked and felt stronger and more fit.

He heard a nurse in an adjoining room call out his name, as the next patient to be seen.  “Gary Jones,” she said, in a deadpan, professional tone. But then, she recognized the name. “GARY JONES!” she cried, with laughter in her voice, and came running out to greet him with a smile.

Let’s have Gary continue the story himself:

“At first, she didn't recognize me, because she had never seen me with hair.  And besides, I had started weeping when I heard her calling my name.  I don’t know what happened to me; I just couldn’t help it.

But I recognized her.  She had cared for me for months.  She was my sister, my mother, my friend, my priest.  In the way that Jesus intended us to be for each other, I realized that she was my Lord, whom I recognized when she called my name.

Ubi caritas, Deus ibi est.  ‘Where there is love, God is there.’”

What a blessing it is to be recognized. And what a further blessing it is to be recognized by name! We honor one another when we welcome one another by name.

As Jesus honored Mary Magdalene, that Resurrection Day. And as he honors us, still.

Happy Easter Season!

(Gary is Rector of St. Stephen's Episcopal Church in Richmond, Virginia.)

March 29, 2013 – For Hmmm... the Bell Tolls

We’ve changed our Good Friday practice at the church, in the last year or so.  Faced with dwindling attendance at the noon-to-three service we used to offer in conjunction with several other churches in the community, we finally gave up on that service and decided to hold one at seven p.m. in the evening, instead. Tonight we’re offering what we expect will be a simple but moving Taizé service, backed by the Chancel Choir, who are in the process of learning what contemplative chants are all about. We’ll see if perhaps we can start a new local tradition.

Because noon-to-three comprises the biblical hours of the crucifixion, this year we simply opened the church for prayer during those hours. It’s our last nod to the Good Friday afternoon worship tradition. I wasn’t in the Sanctuary the whole time, but to the best of my knowledge no one took advantage of the opportunity.

That’s not a huge surprise. The contemplative tradition feels foreign to many Presbyterians. We tend to be a pragmatic bunch — not the sort of crowd who flock to an opportunity to gather for silent prayer.

Besides, to a culture that increasingly worships youth and health with a zeal bordering on idolatry, the figure of a tortured man gasping out his last breath on a cross seems the antithesis of any sort of victory.

In past years, at three p.m., we would conclude the community service by ringing the church bell thirty-three times – symbolic of the years of Jesus’ life. Although the Sanctuary was empty, I went in there today anyway, took hold of the bell rope, and slowly rang it. Thirty-three times feels like an eternity, when you space the rings out with a few seconds in between each one.

Outside, through the stained-glass, I could hear the sound of traffic and glimpse the wraithlike shadows of passing cars: people on their way to who knows where, very likely oblivious to the tradition that three o’clock was the hour of Jesus’ death.

If they noticed the sounding of the bell at all, would they realize what it was about?

I’ve always found the ringing of church bells to be significant in ways beyond words. In the year of undergraduate study I spent in Oxford, I used to look forward to the time each Sunday evening when all the change-bell ringers from the parish churches and college chapels, by common agreement, simultaneously practiced their trade. It was a glorious cacophony I will never forget, a mellifluous, rippling series of sound waves washing over that city of spires.

In years past, church bells functioned as many towns’ public-notification system. Like the Emergency Broadcast System that interrupts radio and TV programming every once in a while for a test, church bells fulfilled that function in years gone by. Public joys, civic celebrations, urgent alarms: all were heralded by the ringing of the steeple bell. In the era before loudspeakers and sirens, it was pretty much the loudest, most sonorous thing around.

That function has long since been supplanted by electronic systems of various kinds. Our local volunteer-firehouse and first-aid sirens are way louder than any church bell in town. In the days following Hurricane Sandy, the local Office of Emergency Management sent out daily information bulletins via telephone robocall. A viral message on Facebook, as we all know, can reach millions in the space of a few hours, if its recipients are keen to propagate it through their slacktivist mouse-clicks.

All that made me feel like a bit of a dinosaur, yanking on that bell-rope thirty-three times in an empty sanctuary, beside a street filled with drivers on their way to who-knows-what sort of Easter holiday sale. (I’ve actually seen a few ads for Good Friday sales in recent years. Now there’s a sacrilegious cluelessness that beggars the imagination!)

American hyper-individualism has been on the rise for generations. Has it reached its spiritual apogee in today’s bland acceptance of "Have It Your Way" McReligion as the national creed?

“Cast off the ties that bound
Our hearts in Christian love:
The fellowship of kindred minds:
To that we give the shove.”

(I just came up with that. Inspired, or what?)

Pulling on that bell rope, I had a odd mental association with the time of my cancer treatment. That’s such an isolating experience. When you mention to someone, “I’ve got cancer,” you can see from the look in their eyes — the oil-and-water mixture of sympathy and fear — that you’re all on your ownsome when it comes to empathy (unless, of course they happen to be survivors as well). As for other neighbors, if they’re at all adept emotionally, they’ll be quick to share sympathy: but truly entering into the experience is — understandably — beyond them.

The bell-tone reverberates, over the parade of preoccupied passersby.  What can we do but sound it anyway, hopeful that, somewhere, someone looks up and displays a half-smile of recognition?

July 10, 2012 - MyCancerCircle.com

There are a great number of helpful websites offering support for those dealing with cancer and their families, but one of the most helpful I've seen is a new site, My Cancer Circle. Cancer patients and/or their caregivers can arrange for a complimentary web page, which gives them a central place from which to disseminate news, coordinate support (such as meals delivery) from family members and friends, etc. It's got calendars, blogging tools and other features to provide a central place for getting the word out and coordinating the efforts of various folks who are trying to help.

It looks to me like the marriage of a project-planning team's intranet site and a cancer blog.  Great concept.

If you set up a circle, it's private. Members have to be invited in order to get a login and password.

I've seen other sites that attempt to do something like this, but this one looks like the most full-featured I've seen so far.

Check it out!

May 3, 2012 – Cancer Changes Everything...and Nothing

Saw a perceptive blog posting today on the New York Times website by Suleika Jaouad, a young woman who’s undergoing a bone-marrow transplant for leukemia.

She makes the usual observation – something I remember well, after going public with my diagnosis – that she’s experienced a whole range of reactions from people.  Some seem able to process the news, others get flustered.  Some friends are right there for you, others go AWOL, at least for a while.

Cancer’s a big, big subject, and it calls forth a range of emotions.  Suleika admits being surprised and troubled by this at first, but then when she got a little distance on the situation, she became more philosophical:

“But in the year since my diagnosis, my feelings of hurt have given way to understanding. How can I expect anyone to produce the perfect, reflexive response to such sudden and unpleasant news? Cancer can catch even the best of us off guard. Sometimes the emotions come pouring out. Sometimes they stay locked inside. I've realized that it's nearly impossible to summon the ‘right’ words while simultaneously processing the news that someone you love has a life-threatening illness. I find myself counseling my friends and family that there is no perfect thing to say – but that they just have to say something.”

I’d want to add, “Sometimes you don’t need to say anything at all, just be there.” But I think that’s what she means.

What is it that makes us yearn for a script to bring to our most significant human interactions?  We seek the perfect words, whatever that means. Sure, words are important, but in the last analysis, it’s seldom the words our friends and family say that’s important.  It’s who they are, and how their loving presence intersects with ours.

Cancer changes a lot about our lives, but that’s something that doesn’t change.

May 2, 2012 - Are You Running for Me?

A few months ago, our friend Thelma – also a cancer survivor – told me of a local organization called Kick Cancer Overboard, that has an unusual mission: offering free cruises to cancer survivors and their families.  Thelma told us she’s going on one of those cruises, in this case to Bermuda.  About a hundred other survivors and family members would be joining her.  What’s more, she wanted to recommend my name as well.

“OK, why not?” I said to her, not thinking it would amount to anything.

Well, come to find out, Kick Cancer Overboard is offering a place on the same cruise to Claire and me.

Not only that, a friend of Thelma’s by the name of Ginny is running in a half-marathon this weekend, and is doing so to raise money for Kick Cancer Overboard in my name.

Our cruise tickets are already paid-for by other donors, so – strictly speaking – Ginny’s not raising money so we can go. It is true, though, that the money she raises will replenish the organization’s coffers, allowing others to take advantage of the organization’s kindness in the future.

Ginny’s set a goal of $2,000 in pledges.  Already, Thelma tells me, $600 in gifts have come in.  Never before have I asked readers of this blog to make any financial contribution, but in this case I’d like to extend the opportunity to honor Ginny’s efforts this Saturday and support Kick Cancer Overboard.  If you like what I’ve written here over the years, it would warm my heart if you’d be willing to make a gift – small or large, it doesn’t matter – to allow other survivors to get a little respite from what they’re going through.

There’s a special web page devoted to Ginny’s efforts, where you can make your gift.

I realize that, in the great constellation of efforts out there to support and heal those with cancer, giving away cruises may seem trivial and even a little wacky.  Yet, having been through the cancer experience twice now – first lymphoma, then thyroid cancer – I know very well how unrelenting this all can be.  Taking a little break, a little sabbath, in the midst of it all, can be therapeutic in itself.

I’d love to see Ginny reach her goal, and am honored she’s doing it in my name, a person she’s never met.

At the end of the day, there’s still a lot of kindness in this world.  Why not perform a random act of kindness and make a contribution to extend some kindness to another cancer survivor, who can enjoy this sort of break in the future?

Thanks for even considering it!

December 12, 2011 – Blue Christmas

It’s been a while since I’ve posted, I know.  I had the fall stewardship campaign at the church, then Thanksgiving, then the start of Advent – all the while dealing with the sandwich-generation issues that are my life right now: young-adult kids coming and going, and caring for my mother who lives nearby and has Alzheimer’s.  Life has been busy (and, thankfully, healthy)!

Yesterday, for the first time, we offered a Blue Christmas worship service at the church.  It’s something I’d hoped to explore in previous years, but it took the enthusiasm of our church’s Associate, Linda, to get it organized.

What a blessing!  Attendance was not large (nor did we expect it to be).  We’d promoted the service as a focused pastoral-care outreach to a select group of people: those who have experienced recent losses, and who feel a bit left out amidst the traditional pre-Christmas merrymaking.  For those who participated, it was a rich and meaningful experience – due, in large part, to Linda, who put together a carefully-crafted order of worship that emphasized the presence of God and the quiet beauty of the Advent season.

Judging from what I know of those who were present, most of the losses were due to bereavement, although we were careful to speak to losses of all kinds, including the loss of jobs and income in this difficult economy.

Cancer, of course, brings its own losses.  Even those who are fortunate enough to go into remission have lost the sense they once had of being healthy.  We’re reminded of that every time we fill in a medical-history form.  Always there is the reality of the cancer, and the thought in the back of our minds that someday it could come back.

Towards the end of the service, everyone was invited to come forward and light an individual votive candle in a blue-glass holder, in memory of their loved one or in recognition of whatever other loss they may have experienced.  The people did that by means of a white, hand-held candle they passed from person to person.  Each one used it, in turn, to light his or her own candle, then passed it to the next person, and so on.

It struck me, at the time, how powerful was the symbolism of that simple act.  Here was a group of people, each of them bearing a heavy burden of grief.  The road each one is walking is, by its nature, profoundly alienating.   Yet, each one passed the light to a fellow believer, all the same.

We receive ministry from others, yet Christ also calls us to offer it.  Even in a season of personal darkness, we can very often still find a little light to offer to another.  This is what life in Christian community, at its finest, is all about.

There are some who maintain that one of the surest ways up and out of the pit of depression is to try to do something for others, however difficult it may be to get started on that.  I think there’s a lot to what they say.

The night before the Blue Christmas service – knowing how few are the liturgical and musical resources to use in planning such a service — I felt led to write the text of a hymn.  It was too late to get it into the bulletin for this year, but maybe we’ll use it next year.

The hymn is set to the hauntingly beautiful tune of The Coventry Carol - a familiar tune to many, but not one we’re used to singing as a congregation.  Not many people who enjoy listening to the Coventry Carol on their Christmas CDs are aware of this, but its lovely melody is desperately sad. It’s the keening lament of the women of Bethlehem, after their male babies and toddlers have been slaughtered by the soldiers of King Herod.  (According to Matthew 2:16-18, Herod was bent on murdering the young Jesus, whom he perceived as a threat to his rule.)  “Lullay, lullay, thou little tiny child” is a lullaby, to be sure, but it’s the last lullaby sung by a grieving mother to the dead child in her arms.  Pretty grim stuff, but also very powerful in a raw, emotional way.

(Scroll down for the hymn text...)

Comfort Your People, Lord

A Hymn for Blue Christmas Worship Services
Text by Carlos E. Wilton
Tune: “The Coventry Carol”

O Lord, we bring to you, this day,

Hearts that are raw with pain:

For sorrow has companioned us,

And in our lives does reign.

You promise to make all things new:

Comfort your people, Lord.

Would that we could turn back the clock

And for one precious hour

Reach out, clasp hands, and touch again

Love’s fragile, with’ring flower!

You cherish all times in your hands:

Comfort your people, Lord.

All through our lives we’ve trusted you

To be most fair and kind:

Though, in the dark night of the soul,

Anger enthralls our minds.

For freedom you have set us free:

Comfort your people, Lord.

We have not always trusted that

Fairness has been your way.

Too soon it’s seemed to watch our dreams

Float up and fly away.

For good, all things together work:

Comfort your people, Lord.

My soul, why are you so downcast:

Caught up in grief’s malaise?

We trust the day will soon arrive

When we will sing God’s praise!

Not Yuletide mirth, but Easter joy:

We ask this gift, O Lord.

Copyright © 2011, by Carlos E. Wilton.  All rights reserved.  Permission is given for congregations to reproduce the text of this hymn in worship bulletins, as long as the copyright information is included.

October 3, 2011 – A Digital Cancer Quilt

Here’s a website worth checking out: the digital cancer quilt at FacingCancerTogether.

I’ve seen similar photo “quilts” whose squares are photos of people with cancer, but this one’s got a cool, easy-to-use interface, allowing different configurations of photos within the square, as well as a place to add some narrative text.

It’s still kind of small, but if we survivors all add a square, it will grow larger pretty fast.

Together, all those squares add up to quite a story of hope!

June 13, 2011 – To Say or Not To Say

In an article in the June 10 New York Times, cancer survivor Bruce Feiler shares a list of 6 things never to say to sick people, and 4 remarks that are always welcome. With one glaring exception, I agree with him.

Here’s his list of “Nevers”:

1. WHAT CAN I DO TO HELP?
Nobody likes to answer this question, says Bruce. Rather than relieving sick people, this question puts the burden back on them to come up with something. Just do something, he says, and don’t worry about whether it’s exactly the right thing.

2. MY THOUGHTS AND PRAYERS ARE WITH YOU.
This is the one I disagree with him on, big time. On the contrary, I always find this incredibly comforting and empowering. He calls this a “mindless cliché,” a “hackneyed expression,” a “platitude.” I dunno, maybe I hear this often enough from people who are actually praying that it doesn’t strike me as false.

3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED?
I had a few experiences, too, of people recommending their wacky cures to me. (Can you say, “Quack, quack”?) Worst of all was the guy who stopped by to offer me a “free” $40 bottle of açai juice, then made sure to tell me he and his wife were in this pyramid marketing scheme, and I could use my role of influence as a pastor to help a lot of other people by getting this healthy product to them, and... need I say more?

4. EVERYTHING WILL BE O.K.
I’m glad you feel that way, but only hearing this from my doctor is going to make me feel any better.

5. HOW ARE WE TODAY?
Thankfully, this is one I never did hear from anyone – though I wouldn’t be too happy about it if I did. When you walk around with "Rev." in front of your name, I suppose people are less likely to talk down to you.

6. YOU LOOK GREAT.
Yeah, heard this a few times. Didn’t believe it for a minute, under the circumstances. Actually, I do say this from time to time when I’m visiting people in the hospital – but only when it’s really true. I figure if it’s true, it’s worth saying. If it looks to me like someone’s making a robust recovery from surgery or whatever, I figure it’s encouraging to pass the observation along. Maybe I’m wrong about that. And yes, I realize my CPE (Clinical Pastoral Education) supervisor, back in seminary days, would never go along with it. (“Don’t try so hard to be comforting. It’s not your job to make the patient feel better. Focus on the person’s feelings and reflect them back.”) Yeah, right. I do that a lot. I did learn something in CPE. Yet, if there’s one thing I’ve learned from the actual practice of ministry, it’s that there’s no formula that works 100% of the time. Sometimes you gotta go with your gut. And truth-telling is always a good thing, when it can be done in a way that’s empowering.

So much for the Don’ts. Now, here’s Bruce’s list of Dos:

1. DON’T WRITE ME BACK.
This is a good one. It says to the person, “I want to let you know I’m thinking about you, but I don’t want you to feel under any social obligation to respond. Save your energy for getting better!"

2. I SHOULD BE GOING NOW.
Don’t overstay your welcome. Always good advice. Being there’s the most important thing, but being there doesn’t mean hanging around indefinitely.

3. WOULD YOU LIKE SOME GOSSIP?
By this, he means “Change the subject. Talk about something else besides blood tests and IVs and prescriptions for a change." Yes!

4. I LOVE YOU.
“It doesn’t need to be ornamented. It just needs to be real.” This is the best one of all, for sure.

December 27, 2010 - Putting the "Death Panel" Myth to Rest

A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.

This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).

What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.

The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).

I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.

Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.

Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.

Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.

Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.

Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.

August 23, 2010 – What the Biograph Knows

Last Tuesday, I went for a PET/CT scan. This is perfectly routine: I get scans at intervals, alternating between the PET/CT and a regular CT scan with contrast. It’s how Dr. Lerner and I figure out if we’re still watching and waiting, or if it’s time to take a more proactive stance.

A year or so ago, the testing interval was every 3 months. Now, the doctor has spread the schedule out to every 6 months. That’s because my lymphoma has been so lackadaisical of late – a good sign.

The scanner lives on the back of a tractor-trailer truck pulled up to a loading dock at Jersey Shore University Medical Center. It’s there a couple days a week. What hospitals it visits the other days of the week, I’m not sure.

Here’s what I recall of the experience...

I’ve been through this enough times to know exactly what to expect. Pin-prick on the finger-tip, for the instant blood test to make sure I’m not diabetic. IV needle inserted in the crook of the arm, into which the technician injects a hypodermic-full of liquid out of a thick, cylindrical, silvery-metal case (that’s lead casing, to protect the technician from the radioactive glucose solution I get to have coursing through my bloodstream for the next several hours – lucky me). The IV needle comes out right after that, then it’s 45 minutes’ R&R in a comfy lounge chair. During that time I’m instructed to sit quietly, even nap if I want. Only then am I ready for the scan.

That entails lying flat on my back, perfectly motionless, for 30-45 minutes, arms extended straight back over my head. I know from experience how the muscle-pain that develops in my arms, after 20 minutes or so of this unnatural posture, is the worst part.

Just before climbing onto the narrow table that will slide me through the machine’s donut-hole, I notice an inscription on the device: “SIEMENS Biograph 6.”

The manufacturer, of course, is Siemens, the medical-equipment giant. Biograph 6 is evidently the model name and number.

Ya gotta think of something while you’re lying on your back, trying to keep from counting the minutes, so I start musing on that word, “Biograph.” Obviously, it’s a trade name dreamed up by the Siemens marketing people. “Bio” means life, and “graph” means writing. Put the two together and the name suggests a chartful of medical data – which is, essentially, what this high-tech test produces. Makes good marketing sense.

It also calls to mind, of course, the word “biography.” Coincidentally, during the 45-minute rest period before my scan, I started reading a biography: The Most Famous Man in America: The Biography of Henry Ward Beecher, by Debby Applegate. Her book’s a fine example of the genre: a collection of facts about the famous preacher’s life, but also so much more than mere facts. The facts are presented so as to conjure up the real person, as though he could step right off the page.

That’s what a good biography does. Yet, I wonder as I lie there: What is it that a good Biograph does?

I suppose the thing that’s most important to the medical community is the way its visioning software slices and dices my body into thousands of paper-thin segments, which it then analyzes, looking for the rapidly-metabolizing tissue indicating a possible malignancy. (I don’t feel a thing while all this high-tech butchery is going on, by the way. Except for the pain from my hyper-extended upper arms, I could probably fall asleep there inside the donut-hole.)

Likewise, a biographer like Debby Applegate gathers and arranges a whole lot of facts about her subject’s life – scanning it, as it were – before sitting down at her word processor. Once she starts to write, though, her goal is not to simply pour out the unedited facts, performing the historical equivalent of a data-dump. No, the biographer’s aiming to put Henry Ward Beecher back together again, so he arises in the reader’s mind as a 3-dimensional personality.

I heard Debby give a talk about her book at the Presbyterian Historical Society Luncheon at our denomination’s General Assembly last month. She spoke of Beecher in a way that intimated he’d become very real to her. I recall her making an offhand remark about how she’d been “living with” Beecher for quite a number of years, as she researched and wrote the book.

The similarity of names makes an unlikely association in my mind to the Marx Brothers’ film, Go West, in which Chico and Harpo are walking up and down a railroad platform as Chico repeatedly calls out, “Mr. Beecher, we’re here to meet you!”

“Are you looking for John Beecher?” asks a serious-looking businessman in a suit. “I’m John Beecher.”

Chico’s eyes narrow suspiciously. “We don’t recognize you, do we, Rusty?” (Rusty is played by Harpo, who emphatically shakes his head “No.”)

“Naturally you don’t recognize me,” sniffs Beecher, officiously. “We’ve never met.”

“Then how do I know it’s you?”

Typical Marx Brothers lunacy.

Does the Siemens Biograph know it’s me? Having sliced me up into a thousand pieces (or, more precisely, into millions of little ones and zeroes), how will it put me back together again?

The technicians running the scanner couldn’t be more cordial or professional, but even so, the whole process is designed to produce a numerical output that falls far short of describing who I really am.

Following protocol, the technician checked my hospital bracelet as I came in. It was his way of answering Chico’s question from the movie: “Then how do I know it’s you?”

Yet, he doesn’t really know me. Nor will the radiologist who reads the results and reports them back to Dr. Lerner. To the inquisitive electronic eye of the Biograph, I’m just a biological system, nothing more.

There’s a famous scene in Shakespeare’s The Merchant of Venice, in which Shylock muses on the alienation he feels as a Jew, living in a Christian country:

“I am a Jew. Hath not a Jew eyes? hath not a Jew hands, organs, dimensions, senses, affections, passions? fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a Christian is? If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?”
[The Merchant of Venice, Act 3, Scene 1]

One of the things we cancer patients appreciate the most is when someone treats us as a real person, not a mere medical case. I’ve been fortunate to get that sort of response from Dr. Lerner and from most of the people who’ve cared for me, over the past five years or so of tests and treatments.

We’d be foolish to expect that sort of thing from the Biograph – although, as we look to our fellow human beings who wear the lab coats and the nurses’ uniforms, is it out of line for us to hope for a little personal interest in our biography?

What To Say When a Friend Has Cancer

Here's an insightful article, shared by Betsy de Parry on the Patients Against Lymphoma group on Facebook. "Vital Tips to Keep Hope Alive Through Cancer" is a blog post by Lori Hope, a lung cancer survivor, on the CarePages website.

Lori's main focus is on what not to say to friends who have cancer. It really is helpful to think ahead of time about how to use our words in helpful, healing ways.

Sometimes the thoughts that first come to mind aren't all that therapeutic for friends with cancer. They may even make life more difficult. Such comments say more about ourselves, and our anxieties, than about the other's needs.

Here's a brief, digested form of Lori's pointers. For the full list, click on the link to the full article.)

• Don’t inadvertently blame the victims by hinting that they may not be thinking positively.

• Don’t blame the victims by asking about possible risky behaviors they may previously have engaged in, like smoking. This is an absolute no-no. (You may be wondering about it, but don't ask.)

• Don't share stories about people you've known who've had the same form of cancer, but didn't survive (Lori says she needs to hear at least five success stories to counter one such horror story).

To that one, I'd add a codicil: Don't share stories about people who had a completely different kind of cancer, thinking it will somehow be encouraging. The word "cancer" covers a vast family of diseases, making it very hard to generalize from one type to another.

So much for what not to say. Now, here are a few positive suggestions:

• For friends who may find it hard to be continually confronted by discouraging statistics, offer to help with research - but don't forward articles without first reading them through completely.

• Try not to be gloomy. Humor is therapeutic, so help your cancer-survivor friends find things to laugh about!

• Every once in a while, remind your friends you’ll be there for them, no matter what. Some survivors have the experience of losing longtime friends who simply drift away, because they can't handle the situation emotionally. It's always good to be reminded of friends who are still there for us.

May 16, 2010 - What To Say or Do When a Friend Gets Cancer

Here’s a helpful video clip from the Today Show, featuring Lori Hope, author of the new book, Help Me Live: 20 Things People with Cancer Want You to Know:

Visit msnbc.com for breaking news, world news, and news about the economy

When I was sick, I was so fortunate to have so many friends from the church bring over food for the family. We never got tired of those gestures, repeated every other day or so for months. It wasn’t an economic thing; it was a way of giving us time with each other.

Of the clueless comments cited by survivors in the video clip, the one I remember hearing is “I know exactly how you’re feeling.” To me, that’s probably the number-one thing not to say. I’s meant to be a helpful comment, but it’s so patently untrue. Every person’s journey is different. Sure, there are points of commonality, but we do well to respect each other’s differences.

I also remember people quizzing me about what I might have done that brought on cancer. Is there any dietary or environmental link that leads to lymphoma, they wanted to know. I figure these comments had more to do with the person making them than with me. They saw what I was going through, and they were trying to reassure themselves that the same thing wasn’t likely to happen to them.

I do have to confess, though, that when I hear of someone diagnosed with lung cancer, I really have to refrain from asking if the person ever smoked. Maybe it’s a carryover from my experience with my father, who died of smoking-induced emphysema complicated by lung cancer. I want to reassure myself I’m not a risk.

Whether the loved one persisted in unhealthy, cancer-causing behaviors is neither here nor there. Such a question has nothing to do with begin supportive. It’s more an attempt to satisfy our own morbid curiosity, and to allay our irrational fears. So, I really work hard to avoid asking that one, myself.

April 13, 2010 - Cancer Concern Center Article

An article in today’s Asbury Park Press has some nice things to say about the Cancer Concern Center, a local organization that provided help to me at one of my lowest points, as my chemotherapy was coming to an end.

Until that time, I’d been toughing it out, turning to no one other than God and my family for support. The night I ventured down the street, to the rented commercial office space where the Cancer Concern Center support groups hold their meetings, was a revelation.

I felt less alone in what I was experiencing. Others had been there, too, and were more than willing to offer support and advice. There was concern – as promised in the organization’s name – but also friendship and even laughter.

From the article:

“The Cancer Concern Center, now in its 13th year, provides weekly support meetings, meditation and yoga classes, massage and Reiki therapy, nutritional workshops and new wigs to local residents. All the work is done by a volunteer staff, and all donations go to client programs.

‘Everything we do here revolves around the women and men who have the courage to walk through our front door,’ said Lisa Montalbano, volunteer office manager at the Cancer Concern Center. ‘We keep cancer survivors from slipping through the cracks of depression and despair.’”

So true.

There are other support-group providers with a national profile, like The Wellness Community, that have meant a lot to me as well. This is a local, home-grown organization. Here in Point Pleasant Beach, we're proud of what they do.

April 3, 2010 - When All You Have Left Is Yourself

Today I’m reading an unusual article in Cure magazine online, "Keeping the Faith," by Kathy Latour. What’s unusual about it is that it deals with the topic of cancer and spirituality with attention to spiritual community.

I find that refreshing, because there’s lots of talk about a sort of generic spirituality when it comes to cancer survivorship. “If it makes you feel good, do it” is the all-purpose mantra. The problem with this sort of approach is that it ends up being a do-it-yourself activity, like trimming your nose-hairs or working out with a Thighmaster.

I think this individualism comes out of good old American separation-of-church-and-state thinking – something I’m in favor of when it comes to politics, but which is woefully inadequate in all but the most superficial discussions of religious faith. Take that line of thinking to its extreme, and you’ll end up like poor old President Eisenhower – who supposedly let himself be quoted saying: “Our government has no sense unless it is founded in a deeply felt religious faith, and I don’t care what it is.”

Some presidential scholars insist that’s an apocryphal remark, and it may well be – but, it catches the spirit of the age. (Eisenhower was a Presbyterian, by the way – though, if he really said that, I suppose he missed Sunday School the day they were teaching Calvin’s high conception of the church.)

In cancer support groups, “guided meditations” abound – those stress-relieving exercises that begin: “Close your eyes, pay attention to your breathing, and imagine yourself walking across a grassy field...”

Now, I can understand the appeal of that approach, to those who arrange chairs in a circle for their cancer-and-spirituality workshops. You can be Christian, Muslim, Buddhist, Jew or South Sea Islands cargo cultist, and still get something out of a guided meditation exercise. Whether the glowing figure walking towards you across that grassy field is Jesus or the Bodhisattva Maitreya makes little difference, because it’s happening in your own, private mental world. No muss, no fuss, no cross-denominational misunderstandings. Everybody leaves happy.

Outside of houses of worship, spiritual support groups are often led by people without any strong (or strongly evident) religious affiliation – the “I’m spiritual but not religious” sort of person. You’d think hospitals and agencies would seek out seasoned religious professionals – nuns who work as spiritual directors, say, or Muslim teachers of Sufi prayer – as long as they’re committed to interfaith dialogue. But, no. Charitable-organization program directors aren’t known for sticking their necks out, so they smile beneficently on psychiatric social workers with no theological background who say, “I can do that,” or on generic “interfaith ministers” holding degrees from unaccredited seminaries (or, God forbid, even internet “ordinations”).

That’s why the article I’ve been reading is so refreshing. The author, Kathy Latour, interviews Harold G. Koenig, M.D., of the Center for Spirituality, Theology and Health at Duke University – a prostate-cancer survivor himself – as he describes a discussion group he co-facilitated called “Engaging the Spirit.” It was a place “where cancer patients and survivors explored spiritual and faith questions as they traveled the cancer journey.” Knowing his group was composed of people from a variety of faith traditions, Harold began each discussion with a simple question: “How’s your spirit?”

OK, that’s a workable generic opening question, but Harold’s point is that the discussion need not remain in that level: “I learned from those who took part that no matter how someone defines his or her faith, in a group of cancer survivors there exists a common quest to understand existential questions about life and death.” When that quest is pursued through religious community, there comes an awareness that “God has a purpose for them and is in control and they don’t have to be. This is where mental health comes from.” Such a strongly-held conviction, the article continues, “frees them and reminds them that their illness can result in ‘something good.’”

From his own experience as a survivor, Harold upholds the value of “a belief system that frames your diagnosis in the context of your life and what you believe happens after life. If you have no framework to place that in, all you have left is yourself and it isn't enough. You can't carry the full load – you weren't meant to.”

A great many recent research studies of spirituality and health, Harold maintains, conclude that people who follow a particular faith tradition “need and use fewer health care services because they are healthier, more likely to have intact families to care for them, and have greater social support.”

The Rev. Isabel Docampo, associate professor of supervised ministry at Perkins School of Theology, “says her fear and depression after facing surgery for life-threatening cancer of the salivary gland came not from a crisis of faith, but from the pain and sadness that she felt from the idea she might leave her 21-year-old son, Ben, and her husband of 18 months, Scott Somers, also an ordained minister.”

“The way I have always looked at life is that it is what it is,” Isabel reflects. “Life is a struggle and God has been there for all the blessings and all the bad stuff, and God is going to be here for the cancer.”

Amen to that.

I wouldn’t want to face cancer knowing that “all I have left is myself” – nor some individualized spirituality I’d made up out of whole cloth, either. One of the great strengths of submitting oneself to the discipline of a particular religious tradition is knowing it’s not all about me, nor will it ever be so.

Now, on to my Easter sermon...

October 15, 2009 - Thanks to Those Lighting the Night

A big "thank you" to all who are participating in Light the Night Walks tonight, and on other nights this Fall, in many different places! The Leukemia and Lymphoma Society sponsors these walks, which raise money for medical research and patient support programs.

It's a great organization - as is the Lymphoma Research Foundation, which has a more specialized mission focusing on lymphoma alone.

Here's a news report in which Saturday Night Live veteran Tina Fey speaks of her support for the cause:

July 15, 2009 - A Common Story

Last night, Claire and I, along with our daughter Ania and niece Elizabeth, went to a midnight premiere of the film, Harry Potter and the Half-Blood Prince. It did not disappoint.

We’ve been fans of the Harry Potter books for some time, and have eagerly awaited each film as it’s come out.

I was struck by how many people showed up at our local multiplex (they were showing the film on at least two of their screens, possibly more). It’s a remarkable thing how many people of all ages have come to know and love these stories: enough to fill cinemas across the country till half-past three in the morning – and on a workday, at that. Judging from the comments we overheard, a great many of our fellow Potter-o-philes are very familiar indeed with minute details of J.K. Rowling’s teenage-wizarding yarn.

It’s a great thing to have a common story.

I was led to wonder how many people, in these days of secularism, feel such a passionate connection with the biblical story? Once upon a time, novelists, playwrights, screenwriters and other creative types could assume their audience could easily recognize biblical allusions. For example, I’ve been listening to a recording of Steinbeck’s great novel, East of Eden, as I drive around in the car. The book’s loaded with biblical symbolism. Were Steinbeck writing today, would he bother to tie his story so closely to archetypal biblical tales like that of Cain and Abel? Would his readers care?

The success of the Harry Potter oeuvre – and Tolkien’s Lord of the Rings before it – speaks to this secular culture’s hunger for a common story, a deeply moral tale grounded in religious sensibilities.

Every time I attend my monthly Leukemia and Lymphoma Society support group (and it’s been several months now since I’ve been there, due to schedule conflicts), I’m impressed by the power of the common story we cancer survivors share. The details, diagnoses and treatments may differ, but there’s a deep well of common experience. In a very real way, the story of my fellow group members is my story too.

Yes, it is a great thing to have a common story.

June 11, 2009 - At CREDO

I realize it’s been quite a while since my last post. Life has been more than busy – bordering on overwhelming, at times. Each year, I always underestimate how hectic the month of June is, in parish ministry. June is the month when most church programs make ready to go into hibernation for the summer (yes, even here in a beachfront resort community). There are lots of end-of-the-year special events to occupy a pastor’s time.

Not only that, I’ve been away from home since Monday, at a continuing-education event called CREDO (an acronym for Clergy Reflection Education Discernment Opportunity, which also happens to spell out the Latin word for “I believe” – or, as some have more poetically pondered, “I give my heart to”). The invitation-only program is put on (and heavily subsidized, financially) by the Board of Pensions of the Presbyterian Church (U.S.A.), although they borrowed its design from the Episcopalians, who pioneered this concept of ministry support. We’re meeting at Beaver Hollow, a well-appointed executive conference center in a rustic, woodsy setting near Buffalo, New York.

It’s an unusually long continuing education conference: eight days. It’s kind of a mid-career tune-up for ministers who have been at this work for a long time and who’ve perhaps have not had an opportunity for a while to get away from the daily grind and reflect on the experiences that led us into this line of work in the first place.

It’s a wonderful group of people: gifted men and women from all over the country who are, for the most part, quite good at what they do. The ages range from 40-55. Few of us have ever met before, but the bonding was instantaneous and we’ve been having a great time.

It’s a wholistic sort of approach, focusing on finances, health, spirituality and vocation. Mostly we’ve been listening to presentations so far, with some small group work. Later in the event, there will be some time set aside for writing our personal “CREDO Plan,” a sort of personal to-do list for strengthening our spiritual life and ministry.

I’d like to share something from a CREDO handout on the subject of health. It has a lot to say to cancer survivors, and to everyone else as well:

A VIEW OF HEALTH

1. Health means a sufficient absence of injury or disease processes so that my basic functioning operates without impairment (This is the traditional view of health).

2. Health means having an awareness of and reliance upon the life force within each one of us, which makes for growth and in the event of illness, for recuperation (we call it a positive attitude).

3. Health means having a sense that each of us belongs to others, and a desire to contribute to the common good (we call it an other-centered attitude).

4. Health means having an understanding that each of us is more than a product of history; that as individuals, we cannot only cope with the flow of events, but we also participate in shaping them (we are co-creators).

5. Health means interacting with others in such a way that our self-constancy, stability and individuality are not dissolved; even under threat (our egos are intact).

6. Health means having a sense of integrity. That is, we function as a unit and are not self-destructing (we have direction, focus, purpose).

7. Health means having a sense of the value of life and of living as a steward, not an owner (we are optimistic and free because nothing belongs to us individually. We have nothing to lose. We can live sacrificially).

8. Health means having a view of life that acknowledges dependency as a part of reality and rejoices in it; which recognizes gifts, including the gift of God’s love, mercy and ever-present Spirit and gratefully accepts them; which accepts creaturehood, as befits children of God.

9. Health means having an appreciation of living from the aspect of eternity that allows us to find security in the hope and expectation of life everlasting, not everlasting life (We can hang loose through all adversities of life because our perspective is eternal).

10. Health means embracing mystery and ambiguity as welcome friends.

Source: Adapted from Richard P. Ellerbrake’s remarks, Helen J. Westberg Lecture, Sixteenth Annual Westberg Symposium, September 11, 2002.

What I like about this statement is the way it integrates the medical and the spiritual. We need more of that sort of thing.