What Would Dad Have Wanted?

Frank had lived a varied and sometimes difficult life by the time he landed in the hospital with a mild stroke.  Like many middle-aged men, several factors contributed to his poor cardiovascular health, but his prognosis was decent.  However, he experienced a major heart attack soon after arriving, and despite valiant efforts he suffered severe anoxic brain injury before circulation could be restored.  Now lying in the ICU in a persistent vegetative state, decisions needed to be made regarding whether to continue life support via ventilator and feeding tubes.  But by whom?

As elsewhere, Oregon law defines this responsibility.  Frank had no advance directive, which would have specified his wishes.  He had no spouse, either, so the law defaulted to his five biological children.  Frank lived with his eldest, Samantha, who had visited him twice in the hospital, while Karen had been by his bedside for hours each day.  The two women were several years apart, born from different mothers, and the tension between them was palpable.  His other three children were estranged from Frank to varying degrees, but after some effort they were located and engaged.

A “goals of care” conference has been called to seek a decision.  I join several others gathered in person, including Samantha, Karen, and Karen’s sister Abigail, along with Dr. Jonas from palliative care, Frank’s ICU nurse, and others.  Joining by phone are a neurologist and other specialists consulting on Frank’s case, as well as the other two siblings, who do not live locally.

Dr. Jonas convenes the group and reviews Frank’s case, noting his status has not changed in days and there is no basis to believe it will.  The neurologist reviews the EEG data and other tests and offers a concurring assessment.  Frank’s ICU nurse summarizes her bedside observations, and also concurs.

Samantha, the eldest, is armed with internet research.  She grills the team with detailed questions and cites cases in the literature of “miraculous” recoveries from similar injuries.  The doctors acknowledge Frank’s chances of recovery are not absolute zero, but very, very small.  They do not oppose allowing a few more days, but they gently press the family for a timeline to make a decision.  Karen jumps in.

“I can’t believe Dad would ever have wanted to live like this.  You all know him, he’s so strong and proud, he would hate the thought of being helpless like he is in there.”

“He’s been living with me for the past three years,” Samantha retorts.  “Who are you to speak for what he would have wanted?  You’re saying you want to give up on him?”

This argument devolves rapidly, and Dr. Jonas steps in to engage the other siblings.  Abigail quickly sides with Karen, as does Stephanie on the phone.  Frank’s only son refuses to express a viewpoint.

“This is ridiculous,” Samantha explodes.  “You guys haven’t come by to see Dad the whole time he’s been living with me.  You might be willing to give up on him, but I’m not.”  She turns to Dr. Jonas.  “So what happens now?”

Dr. Jonas pauses to restore calm, then proceeds.  “Our goal is to reach a consensus, but it’s not always possible.  If a consensus can’t be reached, the law specifies that the views of the majority prevail.  I know it may not seem fair, but it’s the law.”

Samantha scans the faces of her half-sisters in the room.  She screams, “I can’t believe you all are doing this to Dad,” and bolts from the room in tears.

After a few moments to gather ourselves, the remaining children are polled to affirm their wishes.  Frank is removed from life support later that day and dies shortly thereafter.

This is not the way anyone wants a life to end.  I wish I could say this case was unusual but it’s not, except for the level of animosity between family members.  I have participated in similar “goals of care” conferences where family members love and trust one another, but still agonize and disagree over this excruciating question:  What would Dad (or whoever) have wanted?

Few requests feel more daunting than deciding the fate of a loved one without their input.  As this story indicates, it places a tremendous burden on caregivers as well.  The advance directive seeks to relieve these burdens by giving a person the opportunity to speak for themselves while they still have capacity to do so.  Unfortunately, many people refuse or procrastinate on completing the form while healthy, and then, like Frank, experience an unexpectedly sudden decline.

Modern medical technology can be remarkably effective at saving a patient’s life, but it often cannot restore or stop the decline of that patient’s quality of life.  Each of us faces an increasing likelihood that we (or a loved one) will need to deal with the questions addressed by an advance directive: 

  • Who do I want to make decisions for me if I am not able?  As Frank’s case reveals, the law will decide for you if you don’t decide for yourself.
  • What constitutes an acceptable quality of life for me?  Is it important to me to be able to recognize and communicate with loved ones, or simply that I not be in interminable pain?  These are questions Frank’s children could only guess at.
  • What interventions am I willing to undergo to sustain my life?  Respirators, IV fluids, feeding tubes, and kidney dialysis can all play a critical role in treating disease and restoring or maintaining quality of life, but they can also sustain a life that many consider not worth living.

Nobody likes preparing a will, either, yet doing so is now common practice.  Why should we be any less diligent about specifying what happens to us while we are still alive than what happens to our stuff when we are dead?  In both cases our loved ones will be impacted by our failure to express our wishes.  In my view, if you have need for a will, then you need an advance directive, too.

Last week I sat with a woman in her 40s with advanced endometrial cancer, along with a beloved niece.  She had just been told she had six months or less to live, and she requested help in completing an advance directive.  Still in shock, she responded numbly to questions about name and address, but perked up as she spoke by phone to her sister and brother, who agreed to serve as health care representatives if she became incapacitated.  She reviewed several crisis scenarios, in each case choosing “I want to be kept comfortable and be allowed to die naturally.”  She grew more expansive as she responded to prompts about what she values in her life, her spiritual beliefs, and her preferred places of care.

At one point she said to me, “I used to think choosing anything other than all possible life-prolonging measures was committing suicide, which as a Catholic I consider a sin.  I now see that it’s not—it’s still leaving God in control.”  She continued, “This was hard, but I’m glad we did it.  I feel good having these things written down.  I’m so relieved that I won’t be burdening my sister and brother with having to make these decisions for me—how awful that would be for them.”  I affirmed that she was giving all of her loved ones a wonderful gift.

If you would like to learn more about advance directives, please click here to view the Oregon form, or search online for an equivalent form for your location.

Ya Gotta Have Fun, Baby

In January I sent a note to Elder Chaplain subscribers soliciting their personal experiences of the topics shared in this blog. I have since had some wonderful conversations with a few of you, and this column is the fruit of one of them.

When Kevin moved to Los Angeles in the 1980s, fresh out of college, he struggled to make connections and build a new life while working a mundane job in a bank.  Before long, though, he met Marcia, a travel agent in her early 50s who offered him warm friendship and soon became his favorite customer.  On the surface they had little in common, but Marcia’s fun, upbeat enthusiasm and zest for life was exactly what Kevin needed.

A few years later Kevin left LA to attend grad school.  His subsequent work and life took him many other places, but Marcia remained an anchoring presence.  They talked regularly by phone, and from time to time Marcia bailed Kevin out of travel jams.  Kevin visited California often and relocated there more than once, where Marcia became a fixture at many parties and celebrations that Kevin hosted.

When COVID hit, Kevin was no longer able to travel to California.  Cognizant of Marcia’s advancing years and realizing how much time had passed since he’d last spoken to her, he recently called only to find her number was no longer active.  Panicked, Kevin tried unsuccessfully to contact Marcia through several family members. As her 93rd birthday was approaching, he mailed a card to her last known address and, a few days later, was joyful to receive a phone call from Marcia.

She began, “I’m not doing so good, baby.  I don’t know that you’re gonna want to see me in this state.” Kevin replied, “I’m flying out to California right away.  You’re still one of my dearest friends.” 

Right after this, Kevin learned from Marcia’s son that she was rapidly declining and her family was trying to find her an assisted living placement.  By the time Kevin arrived in LA two weeks later, Marcia had moved directly to residential hospice. The setting was wonderful and her caregivers were attentive and kindhearted, but Marcia had continued to decline and was asleep most of the time.

Kevin began, undeterred.  “Marcia, I know you’re in there and can hear me, so I’m just going to talk.  You don’t need to respond at all, I just want you to hear what I have to say.”  He recounted many high points of their 40-year relationship, and how much her friendship and constancy meant to him.  He told her she had always reminded him that, despite life’s hardships, it was important to bring a sense of joy and fun to every moment in life.

With that, Marcia opened her eyes briefly, smiled, and said “Ya gotta have fun, baby.”  Marcia died two days later.

Kevin called to share this story with me the evening that Marcia died.  He was not yet aware of her death, though he said, “I wouldn’t be surprised if she has passed by now.”  He just needed to talk about his extraordinary friend and he knew I would want to listen to his story.  Indeed I did.

Being present with someone who has begun actively dying is never easy, but Kevin’s instincts were spot on.  Research tells us that hearing is the last sense to go, so one should always act as if the patient is fully aware and listening, even if we receive no confirmation.  Kevin may have spoken out of his own need for expression, but what a gift he provided to Marcia!  I can imagine nothing more meaningful to receive on my own deathbed than a visit from a cherished friend to express what our relationship has meant to them.  And what a tremendous reward for Kevin to know that his words were received and appreciated.  This is end-of-life accompaniment at its finest.

Still, Kevin felt a some guilt for having lost touch with Marcia during COVID.  It’s easy after losing someone close to think of opportunities for connection that went unfulfilled.  I find it hard myself to reflect on anyone I have loved and lost without thinking of times I wished I’d shown up better, things I wished we’d shared but never did.  Kevin demonstrated how much he valued their friendship through the lengths he went to re-establish connection with Marcia and to share a final visit.  We are never the perfect friends we wish we could be, but I hope Kevin finds peace and acceptance that he was a very good friend indeed to Marcia.  I know I am grateful to count him as a friend myself.

While searching the internet for Marcia’s contact information, Kevin made an upsetting discovery:  Marcia’s husband had been murdered a few years before Kevin met her, leaving her to finish raising her children on her own.  Kevin asked me how he could have known her all these years without learning this—if she felt that close to him, wouldn’t she have told him?  I shared something I’ve had to learn as a chaplain:  trust a person to disclose what they wish to disclose.  Just because a relationship isn’t transparent doesn’t mean it isn’t close–think of all that is not disclosed between parent and child, even when they are close.  We set boundaries to serve our purposes in all our relationships. 

Perhaps, we speculated together, Marcia didn’t want to burden Kevin, and their relationship, with the knowledge of this traumatic event, especially given how young Kevin was when they met.  Perhaps spending time with Kevin was her “happy place” where this event did not intrude, and she wanted to keep it that way.  Perhaps one of the things she treasured in their relationship was that Kevin’s company offered a space where, in keeping with her motto, she could always have fun.

Is It OK?

I received a request for consult one evening for Robert, a 90-year-old man with many health issues.  His wife, Rosemary, was coming to terms with the likelihood of his imminent death, and she was asking practical questions around what she would need to do in the aftermath.  For many reasons, providing guidance in these matters falls to the Spiritual Care team.

I meet Rosemary outside of Robert’s room.  To my surprise, she looks much younger than I’d expected, somewhere in her 60s.  She seems fairly composed and confirms my understanding of her situation, so I suggest a quiet place just outside the nursing unit where we can talk.

She pauses for a moment, then says, “Do you suppose you could do a prayer in the room with Robert?  He’s not really a prayer person and neither am I, but it just seems like a good thing to do.”  I agree.

We enter his room, taking places on opposite sides of his bed.  Robert appears to be in a deep sleep; he hasn’t moved or spoken all day.  Rosemary announces in a loud voice, “Robert, I’ve got the chaplain here.  I thought it would be nice if he said a prayer.”  We each take one of his hands, then I take Rosemary’s and offer prayers for peace and comfort.  We leave Robert’s room and take our seats outside the nursing unit.  Rosemary seems visibly moved.

“Did you notice how firmly Robert took your hand?  We’ve been married 25 years and I’ve never seen him hold a man’s hand like that.  He rarely even holds mine that way …  He was more responsive than I’ve seen him today—I think your prayer really touched him.  I could feel him relax as you prayed—he seems to be at peace.  Maybe prayer matters more to him than I thought.”

Just then Robert’s nurse and a palliative care doctor approach.  We have an impromptu “goals of care” conference, with the doctor stating that Robert appears to be moving into actively dying.  Rosemary gradually accepts their recommendation to move Robert to “comfort measures only.”  After addressing a few more details, they leave us to resume our conversation.

“Robert has been incredibly healthy until the past 18 months or so.  He’s had a few hospitalizations since then, but each time he’s fought hard and pulled out.  I guess I thought he’d pull out this time, too …”  We sit together quietly while her words hang in the air.

“I mean, with our age difference, we talked openly about the fact that he would surely go first, and I would still have a lot of life ahead of me.  So it looks like that’s where we have finally arrived …?”

“It just might be,” I reply.  Again, we sit quietly for a bit.

“I have to ask you this,” Rosemary resumes again.  “Is it OK that I’m feeling a sense of happiness?  I always thought I’d feel distraught when Robert died but I’m not feeling that at all.”

“I think it’s important to pay attention to whatever it is you are feeling.  Can you say more?”

“Well, Robert and I talked a lot about what end of life might look like for him—that he might get dementia, or a long, painful illness.  Instead, we’ve had a lot of healthy years together, and now a short time of illness.  If this is what the end looks like for him, it seems good compared to the scenarios we’d contemplated.  I’m happy for him, and happy for me.”

“That all feels healthy to me.  Given that never dying isn’t an option, what you’re experiencing seems good in the spectrum of things.  Navigating end of life is one of the most difficult tests we face, and it seems that, with your help, Robert is going to do it well.  I think that’s definitely something to celebrate.”

Robert died around 4:00 am the following morning.

As a chaplain, I pay special attention when someone begins a question with “Is it OK …”  I see it as a sign they are feeling strong but conflicting emotions.  Patients and family members often regard chaplains (among others) as possessing the power to tell them what is and isn’t OK to feel.  As in this story, they can usually answer their question for themselves once given a safe space to express their feelings.  The chaplain’s job is often just to create the safe space.

One root of the problem, I think, is that many of our cultural traditions and religious institutions claim a moral authority that weakens our trust in the validity of our own feelings.  This can lead us to think we “should” feel a certain way about a situation (like an imminent death), when we might not feel that way at all.  In these situations, we often downplay our emotions and look to authority figures (religious, family, friends) to tell us how we should feel.  But our feelings simply are what they are, and they resist being reshaped by what someone else tells us they should be.  Instead, we end up in internal conflict.

Our raw emotions often aren’t the best guide for how we should act, of course, but I think it’s essential to listen for what they might be telling us.  They provide important data!  (In Quakerism, we say, “listen for how the Spirit may be moving within you.”)  Conventional wisdom may hold that happiness at the time of a loved one’s death is a sign of a hardened heart, but once Rosemary explored her feelings she could see they stemmed from a deep love of Robert and a mature understanding of mortality.  It was not only OK, it was beautiful, and I think Robert would have smiled to see her arrive at this place.

Rosemary didn’t need me to tell her this (nor could I have), she seemed only to need permission to look inside and find that truth for herself.  To paraphrase the Wizard of Oz, she had the power within her all along.

Born Under a Bad Sign

“Hi, my name is Greg, I’m one of the chaplains here, and I have come by to offer conversation …”

I have just entered the dimly lit room of Hector, a man in his 50s with a nasty abscess.  As I speak these words he comes into focus:  a shaved head, heavily tattooed arms, staring out the window.  He is visibly agitated, rubbing his eyes with his forearm, sniffing.  He neither accepts nor declines my offer.

“… or company, or whatever you might want.”

After more silent agitation, he begins without looking toward me.  “Everything is so f***ed up right now, I have no idea what to do.  My girlfriend, if that’s what she is, dragged me up here from Arizona—said things would be better here.  But I don’t know anybody here, and now I’m stuck in here and she doesn’t care.  She was supposed to come by today but she’s not, she’s going off to get high with friends.”

“I’m so sorry, Hector.  That’s really hard.”  I sink slowly into the chair beside his bed.

“I want to get out of here and go back to Arizona, but she’s got my wallet and I don’t have any money.  If I go back I’m facing 10 years, but I’m thinking maybe prison’s better than being here, at least there I know what’s what.”

I nod silently, offer a sympathetic grunt.  I am truly at a loss for words.

“I’m trying to get clean after nearly OD’ing and she said she’d help but she’s started using again.  Every time I try to say anything to her about that she just pins it all back on me.  Everything is my fault.”

“You’re trying to get clean, and that’s hard to do when the person you’re with is using.”

Hector looks toward me for the first time.  “Exactly.”  He looks away again.  “I’m clean all right—I’ve been in here for two weeks—but now all these feelings are coming up that I’ve never let myself feel before and I can’t stand it, it hurts so bad.  All I want to do is use again to make the pain go away.”

“I’m sorry, Hector.  That sounds awful.”

“We were trying to get help at a shelter here. They told me all I need to do is put my faith in Jesus, to trust God and God will take my pain away.  How the hell is that supposed to work?  I’ve tried reading the Bible like they told me but I can’t find anything in there that helps me.”

“Sometimes people use the Bible in ways that they think are helpful but actually aren’t helpful.”

Hector turns toward me again.  “Not helpful at all.  When I OD’ed I called my grandmother and all she had to say was that the Bible says suicide is a sin.  That didn’t help anything.  It’s true, I suppose, that using heroin is like trying to commit suicide.  But I was born addicted …”

“From your birth mother?”

Hector nods, then turns away.  “Got put up for adoption.  My adoptive parents were pretty good to me but we never had any money.  So I started stealing stuff to make money.  My mom died when I was 14 and my dad when I was 15 so I joined a gang to have someplace where I felt like I belonged.  I went into prison when I was 19 and that’s where I’ve spent most of my life.”

“That’s a hard life, Hector.”

He looks toward me and nods again.  Just then a doctor enters, and we both know our time is up.

“I just appreciate you listening, letting me say all this instead of keeping it bottled up like I usually do.  I hate feeling like this, I hate that I’m crying like this.  But I can’t tell you how much it means for you to come and listen to me.”

I only made it 10 steps from Hector’s door before I needed to take a seat and try to absorb this conversation.  I have listened many times to people raised (or still growing up) in difficult circumstances, but this one struck especially deeply.  The excerpts above only begin to capture Hector’s rage, his sense of betrayal by everyone in his life, the way his pain pierced him to his very core—and his beautiful spirit.  Like so many patients I see, I left his room wanting more—not so much to learn more personal history, but to experience his humanity more fully.  Sadly, this was our only visit.

Approaching Hector’s bed, though, as I settled in to his physical presence and recognized the evident gap in our life circumstances, my main thought was, “What could I possibly say to this person that might establish a connection?”  The answer: “Not much—just listen well.”  Not everyone wants to speak, but everyone wants to be listened to if there is no agenda other than to become known by another person. 

It’s hard to imagine who Hector might have ever spoken to before in this way.  Not his peers or jailers, for whom vulnerability is a sign of weakness to be despised or exploited.  Not the people at the shelter, who saw him as a chance to save a soul for Jesus.  It drove home for me again how universally we desire simply be known, respected, and loved as the human beings we are at our core.

Albert King’s blues classic “Born Under a Bad Sign” begins:

Born under a bad sign, I been down since I began to crawl

If it wasn’t for bad luck, I wouldn’t have no luck at all

Like many people, I often reflect on why I was born into my time, place, and family.  I’ve had my challenges, but relatively speaking I won the lottery.  Hector did not.  One theme that ran throughout our conversation, though never explicitly stated, was, “I’m trying to be a good person.  What did I do to deserve this?”  I don’t think he did anything, but that doesn’t really answer his question.

I don’t believe I deserved or earned my good fortune, which leads me to a place of gratitude for God’s grace.  But what is the counterpart for misfortune?  How does one forge a trusting relationship with one’s creator when born into such grim circumstances?  I don’t have any answers to these questions, either.

I know that many who are born into such circumstances nevertheless do form faith.  I wonder about the experiences and/or environmental factors that make such faith possible.  I wonder how someone in Hector’s situation could come to believe in a loving God that wants the best for him.  I see God’s light burning beautifully within Hector, in spite of all his suffering, but I wonder what it would take for him to see it and believe in it himself.

Despite not having answers to these questions, this is the work to which I most feel called.  Maybe a lack of answers is an essential prerequisite to doing this work well.

Unfinished Business

Gordon is in his 80s, with advanced metastatic cancer. He has moved to “comfort measures only,” but he retains a razor-sharp mind.  He was an engineer by trade but is a scientist by disposition:  he asks thought-provoking questions and follows the evidence where it leads him—including, in his case, to Christian faith.  In our first conversation, after sharing a story of a vision of heaven, he said, “Some people might call me crazy for believing in something like this.  Do you?”  I said, “If that is your experience, who am I or anyone else to argue with it?”  He replied, “It’s my truth.”

During that first conversation, Gordon spoke lovingly of his developmentally disabled daughter.  He had taken care of her for several years after his wife died, then helped her transition to the group home where she now lives.  He also briefly mentioned a son.  I knew from social work notes that his son had misappropriated funds intended for his daughter, and that Gordon had recently assigned power of attorney to a trusted niece to recover these assets and oversee care for his daughter.  I saw no opening to ask Gordon about this, and he did not go there, so I honored the dictum to “trust the patient to say what they need.”

When I look in on Gordon a few days later, he tells me he is in “incredible pain” and that he had just received morphine.  I return that afternoon to find him lying flat in bed, eyes only slightly open, but eager to resume with his theological questions.  We discuss a few, then the conversation takes a turn.

“You know how Catholics say that the only way a confession can be effective is if you confess to a priest?  What do the Protestants say?  Does a confession have to be made to another person?”

“There’s many kinds of Protestants, and I’m no expert.  But my personal belief as a Christian is no—I know of nothing in the Bible that says confession can’t be made directly to God.”  He nods.  “Still, some people find it meaningful to also share with another person.  Is there something on your heart?”

He stares off silently for several moments.  “No, there’s nothing I can do about it at this point anyway.”  He lifts his arms off his chest, slowly runs one hand over his other arm, then switches hands and repeats.  “I’m getting really old now.  My arms are so weak.  I can’t move my legs at all.  I’m in pain a lot of the time.  I’ve even lost my sense of humor.”  He smiles noticeably.

“I’m not buying that part about the sense of humor—you couldn’t hide that smile.”  He smiles again.  “But I hear you on the rest—I can see that it is true.”

“It is so much work just to stay alive right now.  But I need to do so until I’m sure my daughter’s money is returned to her, until I know she has what she needs to live on.  That’s what’s keeping me working at staying alive.”

“What are you hearing about how that is going?”

“I talked to my niece today, she said it is very close to getting done.”

“That’s good news—I’m sure that will be a relief to you.”  He nods.  His energy is dissipating, so I move to close.  “Gordon, when we spoke the first time, you told me about your daughter’s vision of heaven, and the comfort that it gave you about your own life after death.  Is that still comforting for you?”

“Yes, very.”

So we closed with a time of prayer:  honoring Gordon’s loving care for his daughter, asking for strength to conclude his unfinished business, for peace to accept what he cannot change, for the fulfillment of his vision of heaven—and with a shared smile, wishing God luck in answering all of his questions.

I learned early in my adult life that, within limits, the human will to live can push back the moment of death.  I was 20 and working on a project 2000 miles from home when my mother was diagnosed with lung cancer and given six months to live.  My mom and I shared long phone calls over the few weeks it took to complete my project; I left to drive home the day it concluded.  Taking turns with my brother, also living on the west coast, we drove straight through in less than 48 hours.  Upon arrival we learned our mother’s health had deteriorated right after our departure, and, we were told, “she’s holding on by a thread, just waiting for you two to arrive.”  We hurried into her bedroom and said our good-byes.  She died that afternoon.

Stories like this are common in the literature, and in my experience.  The theme that runs through these stories is “unfinished business.”  Many people, upon receiving a diagnosis that sets clear limits on their longevity, are encouraged to “put their affairs in order.”  This means different things to different people, of course, and is easier said than done.  Not all items on a person’s “bucket list” can be checked off.  Difficult family conflicts, built up over many years, may be impossible to resolve in the time allowed.  As time grows shorter priorities often change.  If a desire seen as truly essential seems within reach, people like Gordon and my mother will put great effort into staying alive, and if it is accomplished will then let go and pass quickly.

But what about affairs that cannot be put in order, especially ruptured relationships that cannot be repaired?  I never learned the story of how Gordon’s relationship with his son broke down—the series of events that led to him battling his son in court while on his deathbed—but it had to have been painful.  I can only speculate, but Gordon may have felt remorse over some of his own actions that contributed to this situation, and in his questions about confession he may have been seeking a way to find forgiveness.  I take no umbrage that Gordon didn’t choose to share his thoughts with me, but I hope he felt clear to take it up directly with the God he loved so much.

A lifetime is never enough time to take care of all of our unfinished business.  The sooner we get started, while time seems abundant, the less we will have to put in order when time is short. But it is still not enough—there are likely always matters about which we feel, “there’s nothing I can do about it at this point.”  We need to make peace with the knowledge that some of our most cherished hopes will remain unfulfilled when we die, and find a way to be reconciled with ourselves, and with our creator, for the work we could not manage to complete.

Inside the Waiting

Photo by Martin Lostak

Most days at my hospital the Spiritual Care team receives requests for prayer prior to a surgical procedure—some major, some minor. After experiences like the one I related in Once a Parent, Always a Parent, I now make it standard practice to offer prayer for anyone accompanying the patient, knowing that the waiting can be as difficult and anxiety-inducing as having surgery oneself.

My friend Elissa Altman, a wonderful and widely published writer, wrote a reflection last spring that captures the experience of waiting for a loved one in surgery with gritty accuracy, honesty, and vulnerability. I have been looking forward to sharing it with you all ever since, and it now feels like the time is right. With no further ado, here is the link to her essay, published in the prestigious Orion magazine. I encourage you to explore Elissa’s writing more deeply—you will be well rewarded.

Inside the Waiting (click to view essay on the Orion magazine website)

Magical Thinking

During ICU rounds I learn that Louis, in his 70s and with a long list of health issues, collapsed at a restaurant two nights earlier and was taken to the hospital.  As complications mounted, Louis requested to move to “comfort measures only”—ending all treatments intended to prolong life—over his wife Esther’s objections.  Esther was expected to return mid-morning, and the ICU staff requested chaplain support in navigating this situation.

When I get to the ICU, I find that Esther has just arrived and has already gone into Louis’s room.  Speaking first with his nurse, I learn Louis completed advanced care documents a few years ago that are consistent with his request.  Given this, and the fact that Louis remains fully coherent, Esther has no legal standing to object to his decision. 

I enter the room and I am greeted warmly by both Louis and Esther.  The nurse enters after me and starts implementing comfort care measures.  Louis’s eyes are mostly closed; he appears calm but laboring. 

Esther begins.  “We have three children and seven grandchildren.  Louis has been calling them and saying goodbye.  There’s only one left to speak to.”

Louis looks toward me.  “I just can’t go on … I don’t want to keep trying.”

“But, Louis, you promised me ten more years!” Esther pleads tearfully.  “You promised me I would be the one to go first.”

“I know I did, but I just can’t do it.”  He closes his eyes to rest.

Esther and I take seats off to the side for a few minutes.  She tells me about Louis and about their life together.  She then turns to his nurse, who has been adjusting equipment on the other side of the bed.  “He seems sleepy.  Are the painkillers making him that way?”

“Oxycodone can cause drowsiness, but we have also stopped the meds that have been keeping up his blood pressure, among other things.  Louis is now entering the phase of active dying; his body systems are shutting down and he will become quieter.  He appears comfortable, and we will keep him that way.  He seems very clear of mind—unusually so for this stage.”

“Oh, you should see him when he is well—he has as sharp a mind as you will ever see.”

Esther and I turn back toward each other.  “What makes this so hard is that our son, who we live with, was recently diagnosed with terminal liver cancer.  He is only 40!  This is all just happening so quickly …”

“I’m sorry.  That is so hard, and you have had so little time to process things since Louis collapsed.”

“Now we are having conversations that we probably should have had years ago.  He’s had health issues for a while, but I didn’t expect this.  I just don’t understand why he seems to have lost the will to live.”

“From everything you have told me, and what I have seen myself, Louis is a very strong-willed man.”

“He certainly is … very much so.”  After a long pause, Esther continues.  “Maybe his body just won’t let him keep going.  Louis always says he doesn’t understand why people make such a big deal out of dying, when we know we are just going to a better place.  That’s what he believes … and I believe that, too, that’s our faith.”

Two nurses come in and prepare to sit Louis more upright in his bed, to make it easier for him to make his final call.  I conclude my visit, and later learn that Louis died 45 minutes after I departed.

I recently read Joan Didion’s memoir The Year of Magical Thinking, which chronicles her grieving process following the sudden death of her husband of 40 years.  There are several parallels with the story of Louis and Esther, including Didion’s grief being complicated by a life-threatening illness that befell her daughter one week prior her husband’s death.  Important differences, too—Didion never had the opportunity for final conversations with her husband.

The most profound parallel, though, is the extent to which both women refused to entertain the imminence of their husbands’ deaths despite abundant foreshadowing.  Didion recounts conversations with her husband that began and ended:

“If something should happen to me …”

“Nothing is going to happen to you.”

Louis’s health concerns were sufficiently severe that he had completed a POLST (Portable Orders for Life Sustaining Treatment), usually used only in cases of advanced illness.  Despite this, Esther persisted in the belief that Louis would live ten more years, and Louis entertained this magical thinking until he could no longer do so.  Esther’s remark, “Now we are having conversations that we probably should have had years ago” was an understatement—during what turned out to be their final hour together, they were just broaching topics such as cremation vs. burial and what kind of memorial service Louis wanted.

Denying the imminence of death is, of course, hardly uncommon.  Even if Esther and Louis had prepared themselves better for Louis’s collapse, Esther’s pain of losing her husband, and the dread she felt for losses yet to come, would be excruciating for anyone in her situation.  It was heartbreaking to sit with her as this new reality began to settle in.  As in my earlier essay Dying is Often the Easy Part, Louis was on the cusp of being released from suffering while Esther’s journey was only going to get harder—and she would have to manage it without Louis, her soulmate for more than 40 years.

One of my primary motivators for this Elder Chaplain project is my belief that normalizing conversations around mortality, especially with our loved ones, can mitigate the distress of a serious health crisis—whether ours or theirs.  In particular, by helping to dispel the magical thinking about immortality that we all can be subject to, engaging in these conversations when we are healthy can help us be more fully present with each other when we arrive at a time of need. 

As the new year dawns, I am grateful for you, my readers, who through your support have joined me in these conversations about mortality.  In the coming year I hope to engage with you more directly, and to bring your voices and experiences into this conversation, so that together we can grow in wisdom.

Hoping Against Hope

“All I know is that six days ago I was perfectly fine, then I had some tingling in my feet, and now I can’t even walk.”

I hold the hand of Rachel, a 40-year-old woman, and absorb the story of her mysterious illness.  I listen to her describe the light of her life, her 18-month-old son, Joseph, and speak of her maternal grandfather, now deceased, who inspired her son’s name.  I create room for her to sob as she tells me how much she misses them both right now.  Near the end her mother, Sally, joins us, and together we pray.

Dear God – We pray for your deep sense of presence as we gather in your name.  We ask for wisdom for Rachel’s doctors, that they might discover the cause of her affliction and restore her to health.  Please comfort her heartache for those she is missing, and grant her peace as she awaits your healing touch.

“If you could come see Rachel today, it would mean the world to her.  She told me you remind her of my father, that you comfort her the way he always did.”

Sally has stopped me in the hall; while Rachel’s unit is not on my rounds today, I accompany her back to Rachel’s room.  Rachel’s husband, Dan, is feeding her lunch, as Rachel can no longer lift her arms.  We speak briefly and agree that another time might be better.  Back in the chaplains’ office, I look up Rachel’s chart and see a new working diagnosis:  Guillain-Barre Syndrome.

Dear God – What a terrible condition to befall Rachel.  I’m sure it grieves you even more than it does me.  Please give her strength to battle her condition.  Help me, too, to be the chaplain she deserves.

“Rachel appreciates your coming, but she’s too exhausted to see you—she just needs to rest.  She’s a real fighter, though—she’ll get through this.  We have her church and ours praying for her recovery.”

Sally has intercepted me outside of Rachel’s nursing unit.  I ask Sally how she is holding up.  Her lip quivers, but Sally’s a real fighter, too.  She says they just need to get Rachel’s sodium levels back up and she can move to the rehab clinic to rebuild her strength.  I review her chart and confirm this prognosis.

Dear God – It’s been more than a week now, and the light at the end of the tunnel seems always around the next bend.  I know you are doing your best—Rachel’s family says they feel your presence at all times.  Please bring strength to them all—and to me as well—to be ready for whatever may be required.

I check the census and find Rachel in the ICU.  There, I find Sally, Dan, and Rachel’s sister gathered to one side of Rachel’s bed.  Sally waves me in, then collapses in my arms.  I close my eyes to feel her pain, then open them.  I see Rachel asleep in her bed—unmoving, intubated.  Dan and Rachel’s sister look on with me, in stunned silence.  Sally lifts her head to speak.

“The good news is she is finally getting some deep rest.  The doctor was just by and said her labs were a bit better.  We might have hit bottom at last.  We just have to hope.”

Sally thanks me for coming, then takes another long hug.  It is afternoon before I can chart my visit.  I learn that Rachel has been transferred to the ICU of a big hospital downtown, which her doctors feel can better address her continued deterioration.  And that is all I will ever know of Rachel and her family.

Dear God – What work this is that you have called me to?  You bring me into the midst of deepest pain, which I can do little to relieve, then pull me out without resolution.  You teach me that accompaniment is my primary medicine, but that I am only one thread in the fabric of care.  I must trust you to heal what I cannot, and I must accept that my care, while it feels insufficient, is nonetheless all that you ask of me.

◊ ◊ ◊

This story, now three years old, still chills me.  As I said in an earlier essay, Practicing Hope, it can be so difficult to be fully present to and engaged with loss while, at the same time, not losing faith that light remains in the darkness.  I draw inspiration from Sally’s continued expressions of hope, which were not simplistic wishful thinking but rather a powerful, determined search for light, for the strength to move forward despite daily discouragements. 

Hoping against hope, when our desired outcome seems increasingly remote, requires us to shift our focus away from that outcome toward a goal that feels more achievable.  If not improvement with symptoms, then perhaps an improved lab result.  If not restoration of the ability to walk, then perhaps increased ability to navigate by wheelchair.  If not remission of cancer, then perhaps reduction of pain and the peace of acceptance.  Hoping against hope is an imaginative reframing of goals within the context of what seems possible in order to restore a sense of agency to those who are suffering.  It is the opposite of giving up hope—it is an accommodation to reality that allows us to continue to hope.

To my mind, this is difficult work to do alone.  The accompaniment of others in our darkest moments can pull us out of a vortex of discouragement and help us consider more broadly the spectrum of possibilities.  The world’s great religious traditions do much the same by placing our personal crises in a larger spiritual and historical context, and by inspiring us with examples of others who have maintained hope despite equally difficult circumstances.

When supporting someone confronting a situation that feels hopeless, our task is to walk a fine line that neither encourages false hope nor discourages the work of hoping.  Often that is best accomplished just by being present, listening to and acknowledging the difficulty of the situation, communicating our love, and supporting the person in their work of evaluating and reframing their goals.  And, if one is a person of faith, trusting that God is present and active in all of this work without ever presuming that we know the outcome.  If we can show up and do this, we will have done our part.

In these shortest days of the year, as many of us prepare for the long winter ahead, it can be difficult to find reasons for hope. Yet we often find it in the unlikeliest of places, including among those whose suffering is greatest.  For me, the most profound message of Christmas is this:  the light shines in the darkness, and the darkness has never overcome it (John 1:5).

Once a Parent, Always a Parent

My first patient for the day—Ruth, a Christian woman in her early 60s—had asked for prayer before surgery, a common request.  When I parted the curtain surrounding Ruth’s gurney in the surgery prep area, I noted a second, older woman seated on the far side of her gurney.  After Ruth and I exchanged greetings, she introduced me to Naomi, her mother.

“I’m having a lumpectomy,” Ruth began, returning her focus my way.  “I’m feeling good about it—they caught it early, and the tumor is small and well contained. They say they should have no trouble getting it all.  But prayer always helps me …”

As usual, I asked Ruth a couple of questions about her faith and what prayer means to her, then I took her hand and offered prayer in language familiar to her, asking for God to bring peace to her heart, to guide the work of her care team, and to provide comfort and healing in the aftermath.

“And God, please also bring peace and comfort to Naomi as she sits in the waiting room.  Sometimes the work of waiting can be even harder, especially when it’s your beloved child who is having surgery …”

Naomi burst into tears and spoke.  “Yes, that’s it exactly.  You see, Ruth is all I have now.  My son died tragically only six months ago.  I just couldn’t bear to lose Ruth, too …”  Ruth turned on her gurney to look over at Naomi, then reached out to take her hand, with seemingly newfound appreciation of her mother’s vulnerability.  I offered my hand to Naomi and she took it, completing the circle.

“Dear God, thank you for your gift of parental love, which endures forever and never gets easier.   You know what it means to watch a grown child suffer.  Please help Naomi to feel your strong presence as she waits while the surgeons do their healing work.  May she draw comfort and strength from knowing of your steadfast love and care—for her, and for Ruth .”

As adults, we can be remarkably oblivious to our parents’ never-ending concern for our well-being.  We are so determined to demonstrate our ability to manage life without their help that it can be irritating to watch them continue to try.  A few years after I had my own children, I listened as my father expressed concern over a challenge my younger sister was dealing with.  “Dad,” I said with obvious exasperation, “she’s almost 40!  She’ll figure it out.”  He calmly replied, “You’ll understand …” 

In many families, as adult children and their parents continue to age, the balance inevitably shifts, and the children become increasingly concerned with—or actually responsible for—their parents’ well-being.  Members of the “sandwich generation”—caretaking parents while still raising children—can’t help but draw parallels between the two, and it’s easy to forget that the parents were once the responsible ones in the family.  But the parents never forget …

My own children are nearing 40 and have gone through their own crises as adults, and I now understand what my father meant.  Once a parent, always a parent.  As the song from Love You Forever concludes, “as long as I’m living, my baby you’ll be.”  If a child of mine needs surgery at age 60 and I’m still around, I’m damn sure going to worry about it, and I’ll try to be by their side even if they think I’m being ridiculous.  I just can’t imagine ever being released of my concern for my children.  Neither could Naomi. 

The death of a child at any age is among the greatest losses a parent can endure.  The gaping hole in Naomi’s heart created by the death of her son was raw and tender—he will be her baby for as long as she lives.  The thought of losing Ruth as well was simply unbearable.  Ruth was likely also the cornerstone of Naomi’s support network for the final years of her life, bringing additional terrifying implications.  As it turned out, Naomi’s fears prior to this surgery were far more profound than Ruth’s.

Some people believe prayer prompts God to intervene on their behalf, though many do not.  More often, as for Ruth and Naomi, prayer serves as a means of connecting to a power larger than oneself, to the creative force that gave rise to our being and never stops caring for us.  Preparing for surgery that day, Ruth and Naomi were not seeking intercession but accompaniment.  Each, in their own way, wanted to know that their fears were understood and empathized with, that the ultimate loving parent would be holding their hands in their time of need—and that the bond of parental love endures all and is never outgrown, even in death.

Richard and Elizabeth

“Good afternoon, Richard, my name is Greg,” I say in greeting to the gentleman in Room 901.  “I’m a chaplain here.  I’m making rounds and offering company, conversation, prayer to anyone …”

“HE CAN’T HEAR YOU,” the woman seated at his feet shouts.  “You’ll have to stand closer.”

I walk over to the right side of the bed, lean over gently, and repeat my introduction in a clear, strong voice.

His face lights up with a smile.  “That’s so nice,” he replies.  “I’m a Christian—an Episcopalian—and I love prayer.  I could use some prayer today.”

I glance in the direction of the woman, and he lights up again.  “That’s Elizabeth, my wife.  We’ve been married 72 years.  Can you believe that?”

I rise and cross over to greet her.  She shakes my hand, then pulls me close to speak in a quieter tone. “My hearing’s not so good, either.  What did he just say?”

“He said you have been married 72 years.  That’s wonderful!”

“Well, it’s mostly been wonderful.  We get on each other’s nerves sometimes.  But I suppose that’s true for every couple.”

I agree, and return to my place by Richard’s side.  “What would you like me to pray for today?”

“I just want to go home.  I can’t even remember why I’m still here.”

“You had your hip replaced this morning.”

“I did?”

“Yes, you did.  I overheard your son speaking with the doctor.  It went very well, you just need to rest and heal up a little more before you can go home.”

“Well, OK, that makes sense.  So how about that prayer?  What kind of pastor are you, anyway?”

“I’m a Quaker.”

“A Quaker?  Well, now isn’t that something!  Did you hear that, honey, he’s a Quaker!”

“HE’S A WHAT?”

“I’m a Quaker,” I repeat, speaking directly toward her.

“So give me one of your Quaker prayers, then,” Richard requests with a smile, then closes his eyes.

I speak as loudly as I can muster.  “Dear God, thank you for your faithful servant Richard, and his wife Elizabeth.  Thank you for the way you have blessed them with each other’s love for the past 72 years.  Please fill Richard’s heart with your presence, and grant him the peace and patience he needs to heal.  Bless them and protect them as they journey home, and for all the rest of their days.”

Richard opens his eyes brightly.  “I never heard a prayer like that before.  I like that Quaker prayer!”  He turns toward Elizabeth.  “Honey, wasn’t that a wonderful prayer?”

“I COULDN’T HEAR A WORD HE SAID!” she replies.

While many patient visits are challenging, many others are uncomplicated and joyful, and leave me with a smile on my face and a spring to my step. Experiencing the love of long-term couples, especially when the honey is sharpened with a little vinegar, is one of the best parts of this work—and of life!