The Myth of Wanting To Let Go

Guest author Lizzy Miles explains in her article here and in Pallimed.org why telling a dying loved one they can “let go” might not be such a hot plan; it might even make things worse:

The idea that a dying person is waiting for permission from their loved ones permeates many articles about the final days of dying. There is some truth to the idea that some patients may linger because they worry about the ones they are leaving behind. However, this concern about the bereaved is only one of many possible reasons that patients do not die when we think they should.
Consider this. How do you know it is okay to go? Have you died before? Do you know what it feels like? No, you don’t–none of us do. Dying is scary stuff, even for patients who have a strong belief in the afterlife or heaven.

Several years ago I had a patient, “Betty,” who told me that she was not afraid to die because she had a vision of her deceased husband and he told her everything was going to be okay. Then one day I was called to the house because she was “dying.” The chaplain, an aide, a few family members and I stood around the bed. The chaplain began to play music and the patient yelled out, “NO” several times. The patient continued to be in distress until we stopped the music and everyone left the room. She calmed down immediately. In hindsight we realized we had put pressure on her to die before she was ready. She died a few days later in the early hours of the morning with her favorite aide by her bedside.

When my aunt was dying, we had the bedside moment with all the family members praying and then my cousin stopped and said she was going to run an errand. I thought she was having a tough time and had to step away from the situation. That wasn’t the case. She told me later that at the time we were praying, she heard her mom’s voice in her head, saying, “I don’t know what you’re all doing, but I’m not going anywhere right now.”

On more than one occasion I have had friends and family question why a patient hadn’t died when they had told them it was okay to let go. The first thing I do is normalize their feelings of uncertainty and the difficulty of not knowing when. Often in these situations I explain the phenomenon of timing. I tell family members that dying is like planning a dinner party. There are a lot of components that need to happen for someone to be ready to go. I tell them sometimes a patient waits for someone to arrive and sometimes a patient waits for someone to leave. I instruct the family to not worry too much about the right conditions because they are difficult to anticipate and rarely what we expect. I tell the families that it will all make sense ‘afterwards’.

I had one woman who was questioning me on the length of time it took for her husband to die and I gave her a short example of another situation in which the patient was waiting for his spouse’s sister to arrive. Oddly enough, that was exactly what happened again. These patients weren’t waiting to see someone for themselves, they were waiting for someone to arrive who would be a source of support for the ones left behind.

One of the more challenging aspects of bedside hospice work is for staff to leave their own expectations and ideals at the door. The best advice I was given as a new social worker was to remember the acronym “NATO” which means Not Attached to Outcome. While we can give suggestions to families and friends on how to talk to or be with their loved one, we have to remember to stay neutral if they do not follow our guidance.

There are times where we, as staff, express our concern about patient situations behind the scenes. Have you heard a coworker express concern or thought to yourself:

There are “too many” people in the room.
Why aren’t they talking to the patient?
Why would they talk about those topics in front of the patient?
How could they talk that way in front of the patient?
Why isn’t there anyone at the bedside?
Why won’t the caregiver tell the patient it is okay to “let go”?
Why won’t they leave the patient’s bedside, even if for just a minute?

Caregiver actions at the bedside can sometimes confound and unsettle us because of our own ideas of a “good death.” However it is not up to us to define. We may actually be the ones who have to “let go” of the idea that we know what’s best for our patients.

This article was posted by Lizzy Miles on January 20,2017 in Pallimed.org. and reprinted here with permission.For the original article plus comments, see  at http://www.pallimed.org/2017/01/the-dying-dont-need-your-permission-to.html

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

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The 99.5 Percent Solution

A short cartoon, just one frame of Charlie Brown and Snoopy, has provoked an awful lot of thought on my part. Snoopy is taking it easy as usual on top of the doghouse and Charlie comes round to vent to his buddy and perhaps imbibe some wisdom. He has some news for his dog: “Someday we’re all gonna die.” Snoopy retorts, “But not on all the other days!”

I told this joke last Wednesday in an unlikely place for a not only Reform but female rabbi: A Chabad Center. At this very Orthodox venue, where the male host would not shake my hands in case I was “unclean” from a feminine characteristic (never mind my postmenopausal age), I was invited to be on a panel alongside an Orthodox rabbi to discuss, “how to make our lives better now.” No sweat, I could handle that question. I was less sure about the venue. I Tweeted, “What was a female Reform rabbi doing in a place like a Chabad Center in Bedford Hills NY? To discuss our mortality but of course.”

The Charlie Brown joke got surprised laughter from the crowd of Boomers and Generation Xers. Whew, I would be alright. But really, the cartoon captured in one sentence one of my main observations that night, which is that contemplating death can tune us in so much more to life, and to what we want to continue and discontinue for our remaining allocation of days. Snoopy the sage also intimates that we should appreciate and savor all those other days that are left.

Savoring life by staring at death may be a commonplace. But how about this? I told the group that sometimes my work in hospice intensifies some of those days that I get to live. On such an occasion, objects seem more present, more “there.” Sounds are richer, reflections off of water brighter, overheard talk more poignant, smells more pungent. I stand in the inscrutable swirl of existence.

During the question and answer period, many questions hinted at fear of death. They asked if people tend to accept it near the end, or whether everything falls into place for them at that point. I sensed the yearning for ultimate answers, which of course no honest human can provide. I gave the consolation prize of explaining how chaplains at least strive to clear away inhibiting agendas and provide a safe sacred space with open-ended questions. This and abundant time to listen lets persons articulate their thoughts without censoring them for family and friends. This way they can then clarify to themselves what their life story has been about.

But you know? Maybe humans don’t have the answers, but Snoopy makes a good point: Around 99.5% of the time that we are alive we are not going to die. Why worry about that less than 1% exception?

What’s Your Hurry?

You would think that if you were nearing death but pain-free and not depressed, you first choice would be to stand anywhere but the head of the checkout line that the Angel of Death was in charge of. If anything, most of my hospice patients jostle to stay at the back of the line or pretend there is no line in the first place.

But every so often, a hospice patient says to me, “When I wake up each day, why am I still here?” Or more generally they will ask, “Why am I still alive?” Or more directly, “I have said all my goodbyes and accomplished everything I wanted. I am at peace with the end. I am ready.” In other words, the spirit is ready before the body. I suppose it is a bit like getting all ready to move out of a home, with the van all packed up to go, but then an unexpected delay at the new locale forces you to stay put indefinitely, and you even have to unpack a few things as you wait in limbo.

Since there is no way I can sneak them ahead in the line, as hospice “neither prolongs life nor hastens death,” what can I tell them? How can I as a chaplain respond to “Why am I still here?” As with any discussion where the answer lies within the individual asking it, all I can do is ponder along with them and wrestle with this existential question together. I may suggest answers I have heard elsewhere, which may in turn help them pull up their own concern. I may open with, “sometimes there are loose ends where something is not resolved. Social workers have told me that you cannot be finished until you have looked back on all the crucial things in your life, or until you have reconciled with someone important.” Usually I get a “no not that” to such remarks, but saying nothing can be even more unsatisfactory to them because I suppose a crummy answer beats nothing at all. So we go on brainstorming. What still gives them meaning now? What memories keep coming back? Is there something else your family needs to hear from you or you need to hear from them?

One time when I was with such a patient, she suddenly reached into herself and came up with her own answer: “Maybe I am still alive because there is some future good news in my family that will fill me with much peace and contentment.” Not only was that a magnificent answer for her, I think it is one that all of us should keep in mind.

My Fascination with Detractors

As I was setting up my display table for a book reading at Crane’s Mill Retirement Community, a woman hurried over to point to the subtitle of my book and say, “Why would anyone want to know what other people said at the end?” As I answered, I had the feeling that no answer would do, because after I did so, she retorted, disappointment marring her face, “That’s what I thought you would say,” and took off before I could refine the dialogue further. My answer had been, “As we hear what people say at such a poignant and intimate time, we can gain some insight as to what is important and meaningful to ourselves, and ponder how we want to spend the rest of our own lives.”

I wonder what she was after, and why she was so unsatisfied by my answer. Shall we speculate? (I say “we” because you can respond in the comments section after this post.) If she had lingered longer, perhaps our dialogue would have gone like this:

Me: What do you wish I had said?

Her: Well I’m not sure, but that is the expected answer.

Me: (Nodding in agreement) Uh-huh. A canned answer.

Her: (Flustered) Well no it’s you see it’s just like wanting to know what is going through a prisoner’s mind before they get executed.

Me: What would be scary about finding out?

Her: Oh I don’t know about scary. Some things are better left to the imagination.

Me: My curiosity does get the better of me sometimes.

Her: I suppose there’s no harm in that. But why about such a….such a (look of distaste on her face) subject.

Me: I guess finding out what people think towards the end makes you uneasy. Maybe for you it’s not like what people say who are about to start a new job or how are about to retire or who are trying something else that’s new for the first time.

Her: Yes, those are different.

Me: (I keep quiet, wondering if I’ve struck gold.)

Her: This is too close to home. (She pauses and I refrain from any potential diversions from what she needs to articulate.) It’s private. We shouldn’t know about what other people say. It’s like, I don’t know, it’s like catching someone in their pajamas. Like you first said, it’s a very personal time.

Me: When someone is dying, or looking back on their life as a whole, it can be very intimate. And when we hear about these conversations, we can feel very vulnerable and unprotected. Perhaps you have lost a loved one recently. I hope, though, that in the spirit that I reveal these encounters, that readers will feel accompanied and understood rather than intruded upon.

Her: (She nods and thanks me, leaving me wondering what even deeper layer would evolve if we were to speak at a future time. Had she lost someone recently? Had that person not talked with her towards the end and left her feeling alienated? Had she herself not broached important but scary subjects and regrets not having done so while she still had the chance? Perhaps she did not like my initial answer because it reminded her that she failed to make use of that intimate and irretrievable time.)

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You: (If that woman had engaged in a dialogue with you about her repugnance at finding out what other people say at the end, what other direction might it have gone?)

On Not Being Afraid to Death of Death

A columnist with the Hudson Reporter interviewed me for an hour in December 2014 and captured the complexity of what hospice chaplains do, and why people are chary of reading about this subject. An excerpt of the interview follows:

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Most people shy away from the subject of death. Not Karen Kaplan. She made a career out of it, serving for seven years as a hospice chaplain, tending to the spiritual and emotional needs of people as they approached the end.

“A lot of people look at my book and say, ‘No, I’m not going there,’” said Kaplan. “Most people are very uncomfortable talking about death or afraid to see a person close to death. It makes you confront your own mortality. But we have to be aware our lives are finite. What’s the legacy you want to leave? There are many healthy questions to ask to make our lives more meaningful and stronger, for people to overcome their fear and enrich their lives instead of shrinking away.”

That was the impetus for writing the book. Then she had to find a way to make it approachable. “I try to write in a strangely humorous way, handling a forbidding subject in a gentle manner,” she said. “It usually revolves around some kind of story.”

For example there’s the 28-year-old ex-policeman with ALS who craved a beer. Although she couldn’t grant that wish, Chaplain Kaplan, as she was known, instead sang songs to him about beer, which brought a smile to his face. “One time he talked about getting a tattoo that would show his police ID,” Kaplan recalled. “Like he wanted to have an obituary on his arm.”

Another patient had parents who were going through a divorce and each visited separately. “There was a journal where they would each make an entry like, ‘I was here, this was what we talked about,’” said Kaplan. “Each parent would read what the other wrote. That’s why the job is so complicated. All the dynamics, the tension between people. All the complexities of life stirred together with this added layer of impending crisis. You have to be sensitive to all the dynamics, what people need, and when and why. That’s what’s intriguing. It’s not just about saying a prayer.”

The circuitous route to hospice

Sometimes, though, a prayer was called for. And when it was, Chaplain Kaplan was up to the task. Prior to becoming a hospice worker she was ordained as a rabbi and served congregations in New York and New Jersey. In fact, it was while serving as a rabbi that she discovered her affinity for hospice work and decided to make the career move.

“I found I was most helpful one-on-one, when they were in some kind of crisis or another,” she said. “Losing a job or bereaving a family member or having to be in a hospital. I was really there with them and felt very comfortable and effective.” Part of that she attributes to her own difficult childhood, with a challenging family dynamic. “Just surviving was kind of the goal at that point,” she said. “That’s partly what shaped my identity. I had so little nourishment of my own, which made me sensitive to the needs of others.”

As a young teenager Kaplan wrote stories and poems before putting aside the writing to concentrate on a career. Graduating from the University of Texas at Austin in 1984 with a PhD in linguistics, she first taught Spanish at Denison University before joining the ESL staff at Hudson County Community College in Union City about 15 years ago. Then came her rabbinical study, including a year in Jerusalem, and eventually hospice care.

Sharing secrets

Kaplan trained for a year in Clinical Pastoral Education to become certified as a health care chaplain. “There’s not only the practice, there’s theory,” she said. “We would meet with supervisors and other chaplain interns to discuss our role and what the climate is like and how to listen and keep our own personal baggage out of the way. We’re not supposed to preach. It’s all about learning how to listen in a nonjudgmental, open-ended manner and really be where the patient is.”

Encountering people on the brink of death wasn’t new to her, however. “I had visited plenty of people in the hospital and been around plenty of death and funerals,” she said. “Even back in my student rabbi days I felt very comfortable and not afraid with people close to the end. I was providing a calming presence. The difference was working with a whole interdisciplinary team.” That included nurses, therapists, social workers, and more, all tending to the needs of the dying.

Kaplan still remembers her first patient after taking a job with United Hospice of Rockland. He was completely nonresponsive. “A fair number of people are like that, sleeping or possibly in a coma or they don’t have the energy to talk,” she said. So how does one provide comfort to a patient when there’s zero response? “I try to get a sense of any energy or if they sense my presence,” she said. “I try singing. Maybe I’ll just stay and hold their hand. I try to find something they may find meaningful.”

The job requires a unique skill set, which Kaplan equates to a detective searching for clues. “You learn to observe and appreciate subtle things like someone opening an eye,” she said. “That means they were interested enough to look at me. They wanted to invest the energy to open their eye as opposed to just ignoring and keeping their eyes closed.”

More often, though, patients welcomed the personal interaction.

“It is part of the appeal of feeling that I’m doing something so meaningful for people, providing that sacred open space for them to bring up the most personal types of things, sharing so much of their personal life,” she said. “They’re telling me the most intimate things they may not even share with their own families.”

It can be an unburdening for the patient, a way of winding down, of letting go. “I might be one of the last people they’re going to see before they pass on,” said Kaplan.

Serving in another way

After seven years as a hospice chaplain, Kaplan decided it was time to take a break. “It’s draining,” she said, noting that the average length of time a chaplain remains in the profession is eight years…She began writing again. And what better subject than hospice care? For her first book she chose to craft “a safe, open place for people to explore these important issues on their own terms. I’m just serving in another way.”

Art Schwartz did this interview. This reporter can be reached at arts@hudsonreporter.com

The preceding interview is reposted courtesy the Union City Reporter. For the full story in this regional weekly, see http://hudsonreporter.com/view/full_story/26232227/article-Last-words-UC-teacher-s-book-details-her-experiences-caring-for-the-dying-?instance=latest_story

 

 

 

A Cold Case Solved

Like Detective Lilly Rush in the television show Cold Case, I have helped others unearth emotions that have lain unresolved for years and years. This time it was at a social hour taking place in the copious back yard of a mansion in New Hampshire…No no, my husband and I did not sneak in; our ticket to this privilege was making a donation to the Walden School, a summer music composition camp for children and teens. I was talking with one of the parents, and soon after she asked about my career, that gave her her own ticket to revealing an aspect of her mother’s death to me. “I just don’t understand,” she was saying. “Near the end, she was trying to tell me something.” Waiters bearing trays of dainty hors d’oeuvres traipsed by as she started to descend into progressively deeper layers of a mystery that had been haunting her.

I started at the surface, which I often do before making my way down to layer after layer of a person’s concerns to get some clues as to where to go. I also do that to see if they want to go further. If successful, I make it to the core. So I started out with, “What did she say to you?”

Anna [not her real name] replied, “Well she couldn’t speak really. I heard her moan. I could not make out what she wanted.” I moved down a notch with, “Sounds like something was unresolved there.” I waved away a tray laden with tinted glasses of pink lemonade as she elaborated, “I felt so bad; I did not know what her last wishes were.” For her, the mansion, the trays, the other people forming clusters on the lawn like grapes on a vine, had ceased their social demands. Her absorption in this intimate matter gave me permission to dig around the core: “Maybe we will never know what she had intended, but what would you guess she was after? What did she need? What do you think you provided her?” As tears came, I knew I had uncovered the core, that tender center of helplessness and love. Anna said, “I think she wanted to be hugged.” A pause, enough for one solid breath. Almost in unison we said to each other, “She might have felt isolated and afraid. She wanted to be comforted, to simply know that you were there, beside her.”

The party came back into existence as she swiftly removed herself from that vulnerable core, perhaps for Anna to approach again when she could be safely alone with her thoughts and emotions. Later one of those clusters comprised of a few “grapes” including me, were seated on steps leading down to the lawn. She saw us, paused to join in, but did not accept my invitation to sit alongside us. As the chit-chat skidded upon this and that pleasing topic, however, I found that she had sat down after all. Her irritation at my pressing against a painful spot had subsided, but I am sure the reawakened anger and regrets surrounding her mother’s death would not be so short-lived.

Unearthing Reasons for Some Unlikely Careers

Why I would enlist in a career as a hospice chaplain must be quite a puzzler to many. To tell the truth, I have my own list of allied professions that I could not picture myself doing, such as being a funeral director. That may strike you as illogical, since both deal with death, right? And privately, I bet everyone thinks the same thing about both professions: Why would anyone want to be in a career like that? This reaction is kin, I am sure, to when laypeople gaze upon a priest or nun and instantly think, “How can they (presumably) have given up sex?” Of all the career choices in the world, why pick ones such as these?

After officiating at a graveside ceremony recently, the funeral director and I had a chance to “hang out” and chat after all the mourners had cleared the scene and the grave diggers were going about their task (another career that is not for me). As required, the funeral director had to wait around anyway until the burial was complete. The conversation turned to comparing our jobs, and neither of us would want to trade with the other. She said, “You have to deal with the people when they are still alive, and face all their feelings about it. I could never talk to them about it. When I see families, their loved one is dead and I just go ahead and make the arrangements.”

I then told her I would be squeamish about handling the bodies and doing any work required to prepare them for burial. I would also miss establishing relationships with patients and their families, however short-lived. In the end, I asked her what people have asked me, and that is, “Why have you, and most in your profession, chosen this kind of career?” This particular director answered that it was because she was afraid of death! She even felt that was true for many of her peers. “They are trying to deal with their fear through this career and become more comfortable with death through being around it.” To me, that is quite an extreme and roundabout way to go about reducing fear. I asked some funeral directors on Twitter about this, and they felt that giving fear of death as a reason was “a stretch.”

I suppose that the reasons both on the surface and under it (approximately 6 feet under) vary from person to person, just as they do for chaplains. I think some funeral directors grew up with their parents being involved in the same profession. I think some find meaning in this career as a community service, and feel empowered by their ability to help in this way. Now that is something I can relate to: unlike so many people, my ability (and that of chaplains in general) to stand steadfastly with those facing the Beyond or those who are first setting out into the alien landscape of bereavement, gives me a special place for me to occupy in the scheme of things. Searching for a place to belong, professionally and otherwise, has been a prominent theme in my life story, and I have found that place in pastoral care and in teaching.

If you are a funeral director, hospice worker, mortician, grave digger or the like, can you express why? Can you dig deeper, so to speak, as to some of the psychological or philosophical reasons for your career choice?

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Announcement: Encountering the Edge: What People Told Me Before They Died (Pen-L Publishing, April 2014) is now available on Kindle.