End of Life 2/3

Steve Pantilat, M.D. was the keynote speaker for the conference entitled Soul Work on Living and Dying that friends and I attended a few weeks ago.  Dr. Pantilat is a renowned expert on palliative care — care which he describes as “focused on improving the quality of life for people with serious medical illness.”

I’m going to offer a few highlights of his presentation (any errors are mine, straight from my notes), and suggest that you read his book, Life After the Diagnosis.

life after cover

One: We tend to think that we must choose between quality and quantity of life: we must choose either every treatment offered us to prolong life, or refuse treatment and die. This is a false and damaging dichotomy, as much care is available to make life in the face of illness more palatable — and often longer.  Dr. Pantilat advocates for everyone receiving palliative care from a team of caregivers within six weeks of a diagnosis of metastatic cancer.

Two: A terrible question: “Would you like us to do everything possible?”  Of course; who is going to sat “no” to  question like that?  I have been with both parishoners and family when that question has been asked, and it has been very difficult to walk the conversation back with what is always my next question: “Could you please explain the likely consequences of a ‘yes’ answer?”

A good question: “How are you hoping we might help?”  People may have very specific goals related to pain management, surviving until a family event takes place, travel plans, where they want to be when they die — but an open-ended question is needed for those hopes to surface.  My own commentary: People are often too intimidated by the presence of a physician at a hospital beside, or too frightened by the death they have not discussed with anyone, to say, “I know I’m going to die soon, so I think I’ll skip the clinical trial, and go home to be with my family instead.”  We have to ask, not assume, what someone’s priorities are.

Three: People are fearful that talking about these issues will destroy hope.  In fact, talking about the questions increases hope.  Other good questions include, “What are you hoping for in your future?” “What worries you most about what lies ahead?”

Four: A most unfortunate statement: “There’s nothing more we can do.”  In fact, there is always something that we can do in terms of helping someone address their concerns, companioning them, and alleviating their feelings of abandonment.

Five: It’s a myth that the goal is to have a “good death.” I would take issue with his statement that “grief is not mitigated by age and a ‘good death,” but his overall point is a good one:  The goal is to live a good life.

Next post: Another of our speakers.

End of Life 1/3

I suppose that I’ve always been intrigued by end-of-life issues.  So many early deaths in my family.  I volunteered for hospice decades ago, as a follow-up bereavement counselor — something that I thought was important for post-loss health, and something that I could do on my own schedule, on my phone, when my children were small.

I became much more interested in the realm of end-of-life care when my step-mother Jewel was dying of lung cancer.  It was a brutal experience for everyone involved.  If there was something that an oncologist could do wrong in treating someone with cancer far advanced at diagnosis, hers did — and refused to discuss other options with me.  My niece had also been a hospice volunteer and drove around for those four months with a box of materials in her car, my brother reached out to a social services agency, and I visited every few week-ends.  All of our efforts to provide my father with help and to offer both of them with a more humane experience were for naught.  Jewel was convinced that to decline aggressive treatment would be “to give up.”

A few years later, when I was a chaplain intern over the summer as part of my training for ministry, I saw much of the same on the medical intensive care unit of the hospital in which I trained.  So many tubes and machines, so many aggressive efforts, so many patients and family members unwilling to let go.  Of course, none of us can predict our reaction in similar circumstances — but I used to come home at night (or early in the morning), collapse, and say, “If anyone ever utters my name in the same sentence as the a phrase which includes that particular floor, being me home immediately!”

As a pastor, I have seen many people seek hospice care only a day or two before death is likely to come, and skip any form whatsoever of palliative care.    While there is much assistance available to ease the passage from this life to the next, physically and emotionally and spiritually and mentally, few people are aware of the options, and many share Jewel’s view: “Can’t give up!”

A few weeks ago, I was privileged to attend an outstanding conference on end-of-life care, and to share it with good friends: one a trained chaplain and two of them nurses — one of them now caring for her 90+ year-old father at home.  In the next few days, I’ll share some of what we learned.

Back to Birds

It’s been a long time.

I’ve been studying up on migrating warblers and their friends — sparrows, shorebirds, waterfowl — for the last week or so.   I’m keeping a running chart, adding a photo of a bird, or two or three, each day, as I try to re-learn identifying features and colors.

waebler

I used to know a lot of birds.  I got into birds when I was in law school, and for years they provided a respite from an intense and competitive professional life.  I had many wonderful opportunities ~ teaching as a volunteer at The Museum of Natural History, hanging out with photographers and eagle researchers, participating in field trips in Ohio and Ontario.

We kept up with birds as a family for a few years when the kids were small, but then . . . soccer, and school, and life in general intervened.  For many years, I’ve gone out once or twice in the spring to look for the migrants, but I haven’t had the energy or interest to take them more seriously.

This year, I’m suddenly inspired.  And so I am making these charts, and remembering.  Some of the birds I could identify immediately; others are taking some work.  But what I’m finding to be really fun is re-discovering memories of the people with whom I’ve spent serious bird time.

  • Prothonotary warbler: BW, pausing on a dike in Ottawa NWR, to take a look at that shimmering golden-orange creature and saying, “Look at that sweet thing.”
  • Ovenbird: A herd of birders at Crane Creek, determined to get a look at one small fellow scuffling in and out of the underbrush.
  • Spotted sandpiper: HW, guiding us along a marsh somewhere, and explaining a flight pattern that I recognize instantly, 40 years later.
  • Scarlet tanager: A young teacher, who would die in a car accident shortly thereafter, standing in the rain amidst a migrating wave of birds and exclaiming, “Black-winged redbirds!”

I saw a post a couple of days ago from a birder in Central Park, who had a nice long list of sightings from earlier in the day.  My list from this past week is pretty short.  But I feel alive and connected to the natural world in a way that has eluded me for a long time.

 

Image: Common yellowthroat, from Wikipedia.

Holy Saturday: The Day After and the Day Before

It was the summer after my senior year of high school, and I was living with my maternal grandmother and her husband down in Cincinnati, so that I could work in a nearby motel.  There was little in the way of summer jobs in my small hometown an hour to the north.  Early Saturday morning, wearing my white maid’s uniform and sneakers, waist-length hair pulled back into a ponytail, sitting at the formica table in the kitchen, I eat my cereal. I am basking in the pleasure of having the house to myself for the week-end, while D&K spend time at his cabin in Kentucky. 

When I answer the phone my father is on the other end.  My stepmother, on vacation at Chautauqua with her daughter and grandson – the husbands to go up the next week-end – has somehow died in the night.  Late forties, healthy, excited for weeks about the anticipated time with loved ones in a favorite place.  Dead.

My uncle arrives a few minutes later to give me a ride to work.  I have changed into jeans, and tell him that he needs to drive me home instead.  We are silent, silent the entire way.  I see a tear run down his cheek, and I am surprised, but then I realize that he is remembering a similar drive ten years previous, when my mother, who was his sister, had been killed in a car accident, along with my baby brother.

. . .

At home, sitting in the kitchen.  A few people, family and neighbors, are milling about, making phone calls, making coffee, making lists.  The air is leaden, with a sense of doom being replayed.  I am not quite eighteen, and I watch them in wonder.  Each seems to have a role to play, and each seems to know his or her part.  It occurs to me that they have all done this before, ten years ago, and they know how to do it.   My role is to watch and learn, so that I, too, will know what to do someday.

. . .

We are crammed onto the back porch, which is really little more than a square brick entryway, crouched and sitting and standing, we six kids, who have seldom all been in the same place at the same time since our parents married.  July afternoon, warm, sunny.  Death has finally brought us together. My youngest stepbrother, almost thirteen, had found his mother.  He describes the scene, again.  My stepsister, 22 and a fairly new mother, says, “It’s so weird.  It’s so weird.  One minute, someone is alive, and the next, she isn’t. “  Later, she and I will return to the Chautauqua cottage and circle it like stealth reconnaissance agents, trying to reconstruct the events of that July night.

She looks at my brother and I as we sit on the porch, legs dangling over the grass.  “You already knew about this,” she says.  I always remember her tone as one of accusation, although I am sure she did not intend it that way.  But it was true.  We did know.  We had known for most of our lives.  One minute, someone is alive, and the next, not.

Holy Saturdays.  Bitter Saturdays. They happen to us all.  As more than one friend has noted this year, the anguish is not erased in three days.  And once you know that things are one way one minute and another the next, you cannot unknow it. 

Church Ecology

Our adult Sunday School class at church is reading a book entitled Slow Church: Cultivating Community in the Patient Way of Jesus.  I made the choice, designed to help us explore possibilities for slowing down and re-imagining choices for community during a time of transition.

Today we embarked upon a section of three chapters called “Ecology.”  Why, I wondered all week, did the authors pull material on wholeness, work, and Sabbath together under such a  general heading?

I finally began to think about what the word ecology means: the study of a system and how its parts fit together and relate to one another, successfully or not.  And so we began with a discussion of the ecology of a field — the nutrients of its soil — nitrogen, sun, water) its products (grain, vegetables, fruits), and those who make heir living from what it produces (rodents, snakes, insects, birds, us).  All of those diverse parts are necessary for a healthy field ecology.

craggy gardens

I’m not sure that we quite made the transition to church ecology, but we did talk about our call to stewardship, of field and church, about the fragmentation and broken places in the church, and about what might be required to heal that fragmentation.

How might we become open to specific possibilities that we might be inclined to reject off the bat, but might be welcomed by others and might enlarge and deepen our community and practice of worship?  How might we imagine ourselves as a community with an ecology sustained by a healthy diversity and web of relationships rather than isolated preferences?

We weren’t quite so articulate as I’ve implied, but it was a start ~ and a fascinating way to consider church community.  Next week perhaps we’ll make it through the chapters on work and Sabbath, and make some progress on articulating our own ecology.

 

Photo: Lovely Daughter hiking in Craggy Gardens off the Blue Ridge Parkway in North Carolina.

 

Learning New Things: Hamstrings

I was never a person, even as a young girl, who could touch her toes.

As my body has aged, I have progressed from “naturally inflexible” to rigidly stiff and pained.  Yesterday The Lovely Daughter and I went hiking, on mildly strenuous trails through a rocky gorge.

nelson ledges

The downward trails were challenging to these achy knees and uncompromising thighs.  A couple of times I chose slides on my rear rather than attempts at navigating the trail.  And today ~ oh, I am feeling old!

I came home and did some reading.  Probably many of you are aware of studies showing that being able to rise from a seated position on the floor without using hands and tables and chairs for assistance is a sign of overall health and future longevity.  I gave it a try.  It appears that my demise is imminent.

This afternoon I educated myself about hamstring muscles, the muscles that help to form the backs of our thighs.  (How did we tolerate life before the internet, with libraries closed on Sundays?)  There are three of them, the hamstrings, and they wrap around and find their final resting place alongside the knee ~ and thus their stiffness accounts for not only mobility challenges, but also for knee pain.

And so I have a new yoga and stretching program, focused, to start with, on those poor hamstring  muscles.  It has occurred to me that, when I broke my ankle some years ago, the physical therapy required after surgery began with the smallest of (attempted) movements, repeated several times a day, and transformed me from someone who could not move her ankle even a fraction of an inch in any direction into a regular walker again.  It took months, but it happened.  Why not repeat the process?

My rapid decline is not inevitable, I think.  I have no ambitions like The Quiet Husband’s ~ he runs in senior track meets! ~ but I have modest goals for long walks and strength and flexibility.  Maybe even backpacking again.

With my newfound anatomical knowledge, I feel a slight surge of optimism.

 

Photo: Nelson Ledges in Northeast Ohio.

No Hospice Time

Trigger Warning: Parental Death

Several of my friends have lost or are in the process of losing parents, parents who have been or are in hospice care.  I admit to being a bit envious.

When my dad was diagnosed eighteen months ago with lung cancer for the third time, he and my once-stepmother-back-together-again immediately began looking at treatment options.  The initial information was sobering — multiple lesions in his lung — and the news became more dire as a scope was recommended and then not, due to a tumor wrapped around his pulmonary artery.  I was surprised that he was considering chemo, as the brutal death of his fourth wife, from lung cancer treatment as much as from the cancer itself, had caused him to swear several years earlier never to fall victim again to such medical excess.  But the impetus to live is strong . . .

I went down to visit for a couple of days while he awaited further testing which he had inexplicably rejected a couple of weeks earlier.  I said that if the cancer had spread beyond his lungs, he might want to consider wrapping up in a sleeping bag and spending his remaining time sitting on his deck, enjoying the woods and creek below, and the birds visiting his feeder.  It was November and he was nearing 85; it seemed like a plan to me.  He seemed to hear and not to hear.

My stepmother told me later that they were hoping that the chemo would eradicate the cancer as quickly as it had appeared, and that he would have several good years left.  I decided to remain silent, and headed home, beginning to work out in  my head how I might arrange my schedule to accommodate several trips to their home four hours from mine, as I had been able to manage when my previous stepmother was dying.  I had read about tumors encasing pulmonary arteries, but I permitted myself to imagine that it would be a privilege to care for my father, if there were time in which to do so.

Three mornings later he was doing laundry just off the bedroom, and collapsed and died. Presumably that wraparound tumor had ruptured the artery. After a mad dash to the hospital and a declaration of death, the paperwork for his donation of his body to the medical school was completed and he was transported to . . . somewhere.  The test results, confirming the spread of the cancer across and into multiple areas, came back a few days later.

I admit to being a bit envious of my friends who’ve had hospice time.  I guess that conversation about the deck and the sleeping bag and the birds was it for us.

 

Lenses

I’ve been thinking a lot of late about the lenses through which I view life.  I suspect these are natural reflections for one moving into the third third: How do I see, why, and do I want to make changes?  They are also an outgrowth of the current political climate in America, as we try to make sense of the reality that people whom we love and admire espouse views and understandings so different from ours.

My own lenses, in no particular order:

Life is filled with injustices that we are called to address.

Life is difficult and chaotic, and also elegant and dazzling.

Faith is a matter of both deep darkness and glorious light, depending.

Hospitality is very good; nationalism is very bad.

My own personal life is mostly a function of astounding privilege.

Maybe I’ll write about these.  In no particular order.

 

 

 

 

Raising White Kids ~ Book Review

raising white kids cover

It’s a terrific book!

Raising White Kids: Bringing Up Children in a Racially Unjust America (2017) by Jennifer Harvey address a challenging topic in a conversational, easy-to read manner that, despite its accessibility, delves deeply into issues that many of those of us who are white struggle to recognize, let alone explore and respond to in ways that are open, just, and productive.

Full disclosure: I’m white; everyone in my biological family of origin  is white; I grew up in a family that purported to be “color-blind”; I live in a racially and culturally diverse city in which, nevertheless, all of my good friends are white.  My children’s significant others and my future grandson are individuals of color, so the issues raised by this book are of more than passing or even committed-as-a-progressive interest to me.  Three of the four congregations I have served have been made up almost entirely of white people and located in white rural or suburban areas, so these issues are also important to me as someone charged with pastoring churches and proclaiming the gospel.

This book isn’t, of course, about me or my family or my churches, at least not entirely, but it addresses families and groups a lot like ours: not intentionally racist; well-meaning; hopeful; perturbed by racial injustice but not doing much, if anything, about it; and not even sure when we are offensive in casual conversation or actions we don’t think much about.

I’ll offer a couple of nuggets that I’ve found helpful:

After discussing the harm generated by “color-blind” parenting, the author presents a couple of scenarios in which a young white child comments, loudly and publicly, about the racial appearances of strangers.  How might parents react, other than with embarrassment and a quick move away from the scene?  The books offers practical suggestions along with clear explanations of the logic and sensibility behind them, ideas that can be put into practice immediately.

Another important section of the book discusses the development of white racial identity: how those of us who are white become aware of what that means in our culture, and how we resist the implications, struggle to come to terms with them, and finally, see ourselves and others more fully.  At a workshop a year ago in which participants were charged to identify which element of our identities and backgrounds has been most significant in our lives, I concluded that race has been the most significant in mine — moreso than gender, or age, or education, or income, or religion, because of all the things I haven’t had to think about because I’m white.  I plan to re-read this section of the book very carefully, several times over.

Each chapter of this highly readable book ends with a blocked-in list of Takeaways, helpful for personal or group reflection, and a section of Resources and the Endnotes provide additional material to aid in a  deeper exploration of this critical topic.

And I’m here to help!  Abingdon Press sent me two copies of this book for review purposes, with no commitment on my part to provide a positive review.  (And you all know, I don’t always do that!) Today I’m happy to do so, and to offer to send a free copy after a drawing of names from requests in the comments.

Blog at WordPress.com.

Up ↑