Posts Tagged 'hospice'

Ch. 20: Hospice volunteering

hos·pice noun
/ˈhäspəs/
a program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care; also a facility that provides such a program

I didn’t belong here at this intimate moment, perhaps life’s most intimate moment. It was not what I had planned, but here I am.

The patient I had come to see was actively dying just a few feet away as a relative, perhaps a sister, crouched next to her softly singing hymns into her ear.

I am there as a hospice volunteer. 

Earlier that morning her husband had asked me to visit to record his wife’s life story not realizing that her death was imminent. 

Now he was looking at me hoping I could help him understand what was happening or perhaps even to prevent it.

Not for the first time I wondered how I found myself there at that particular moment at this time in my life.

I can’t say why for sure, but I have long had a more than ordinary interest in death and dying.

Long ago I had intellectually accepted that death awaited us all, and I never considered it “morbid” to acknowledge and discuss the significance of that reality.

Perhaps that was because my grandmother would often tell me when we parted company that we might not see one another again because she could die, even though there was no obvious reason for that being so.

In my 20s I read several books about death and dying, and as part of a graduate school project I interviewed morticians, elderly people, and religious leaders about their perspectives on dying.

I knew that when I eventually left my job at the National Staff Development Council (now Learning Forward), which required a great deal of travel, I wanted to be a hospice volunteer. I also knew that I wanted to support hospice patients and their families in telling and preserving their life stories.

I have always admired those who do hospice work. Nurses, doctors, social workers, and spiritual care providers. In my view they are as close to angels as I am likely to encounter.

I felt drawn to hospice volunteering because I believe that people can learn important things throughout their life spans, even until the very end of life, and because it would allow me to meaningfully apply skills I had spent a life-time developing—particularly being fully present and listening deeply. 

In addition, I thought it likely that hospice patients and their families would teach me important lessons about living life fully now, and that those lessons would support me when it became my time to navigate that passage.

I was not entirely confident about what to say or do around dying people and their loved ones, but I eventually learned that human presence was sufficient and that words were often unnecessary.

In 2010 I created a volunteer position for myself that enabled me over the next several years to make dozens of video and audio recordings of patients’ life stories, often told in conversation with family members.

That was how I found myself in a living room with a dying woman whom I had never met, knowing that it was too late to do what I had come to do, but not too late to offer whatever comfort I could to her husband, taking my leave a few minutes later as family members and friends began to fill the house.

Have you ever felt “called” to do a particular thing, and, if so, what effect did that calling have on your life?

[This post is one in a series from a memoir titled, “It Might Have Been Otherwise.”]

Everyone has an important story to tell

lis·ten verb
/ˈlis(ə)n/
take notice of and act on what someone says
make an effort to hear something; be alert and ready to hear something

sto·ry noun
/ˈstôrē/
an account of past events in someone’s life or in the evolution of something

Since 2012 I have published some version of this essay to recognize StoryCorps’ National Day of Listening.

What I said then is as important today as it was 7 years ago:

Everyone has a story to tell, and, given an opportunity, we all want to share the important stories of our lives, stories that explain who we are and where we came from, that prove we existed and mattered, that demonstrate our resilience, and that reveal the people and events that affected our lives.

And we can all learn important lessons from one another’s stories.

StoryCorps’ “National Day of Listening” provides an opportunity to evoke those stories.

On the day after Thanksgiving, StoryCorps asks everyone to take a few minutes to record an interview with a family member or friend.

You can use recording equipment that is readily available to you such as a computer, smart phone, tablet, or other voice or video recorder.

StoryCorps provides a free Do It Yourself Instruction Guide.

The lesson that everyone has an important story to tell has been reinforced time and again for me as a hospice volunteer who has been privileged to record dozens of hospice patients discussing their lives in conversations with family members.

All that is required of us is to extend the invitation and to listen deeply without interruption to those stories.

Once the conversation begins, it’s likely to proceed almost effortlessly, at least in my experience.

Some possible questions include:

• What elders or events influenced the person you’ve become?

• How would you like to be remembered?

• What advice would you like to pass along to your children, grandchildren, great grandchildren, or others in your life?

There’s no gift human beings can give one another that is more important and precious than our undivided attention and genuine interest in the stories we all have to tell.

When that attention promotes storytelling that is preserved with video or audio recordings, it is a gift that benefits future generations for decades to come.

Consider:

How have stories and storytelling shaped your life?

To whom would you like to reach out—an elder, a family member or friend, a veteran, a colleague, or a neighbor, for example—to invite his or her storytelling?

Why it’s important for leaders to maintain a “learner’s mind”

Over the past decade as a hospice volunteer I have supported dozens of patients in telling their life stories and preserving them for future generations.

More often than not, patients were energized by the process of reviewing their lives. In addition, as they reflected on their experiences they often discovered an overarching sense of purpose that was previously invisible to them. 

And almost always they would tell stories that were meaningful to me, such as this one I offered in an April 2015 post.

When leaders’ egos grow too tall

“There’s an ego looking for a place to inflate,” my table mate at a Washington, DC meeting of high-level officials whispered to me as a prominent member of the education establishment entered the room, a prophecy that unfortunately soon proved itself to be true.

I was reminded of that meeting when Jean, a patient I was visiting in my role as a hospice volunteer, shared with me a simple but profound poem she had recently written:

“The long, dark corridor of life narrows at the end./And those whose ego grew too tall will have to learn to bend.” 

While Jean was describing the “long, dark corridor” of her own life as it narrowed in her 90s, her warning regarding egos that grow too tall without learning to bend also obviously applies to education leaders.

Signs that a leader’s ego has grown too tall include:

• Enjoying hearing himself or herself talk, usually at great length, rather than listening to others.

• Believing that he or she generally knows more than others, including being the only one with the wisdom to understand problems and how to solve them.

Ways in which leaders can learn to bend:

• Maintaining a “learner’s mind.” Leaders with such mindsets assume that they may not know what they don’t know.

• Recognizing that the perspectives of others are essential in identifying and solving problems.That means that they seek first to understand by spending far more time listening than speaking.

• Remembering that while leaders have unique roles and responsibilities, those who are successful cultivate a community of equals rather than one of  privilege and hierarchy.

What have I missed?

Words matter

We need look no farther than current news headlines to see that leaders’ words can cause harm by inciting hatred and provoking fear.

But we can also can find examples of words that uplift and inspire.

My February 2016 post spoke to this issue, and my next post will address what administrators and teacher leaders can do to create and sustain civil school cultures.

Here’s what I said in 2016:

Words can injure, or uplift and inspire

A hospice patient in her 60s whose life story I was videotaping told a sad story from her childhood about an adult who had said cruel things about her, words that produced a depth of pain that was still sufficiently strong that she felt compelled to talk about it at the end of her life.

“Some people say that sticks and stones may break our bones, but words can never hurt us,” the patient told future generations of her family. “I want everyone who sees this to remember that that is not true. Words can hurt us.” 

Words matter not only because they affect our feelings but because they can alter how we view ourselves—whether we see ourselves as valued or unimportant, respected or disrespected, competent or incompetent, included or excluded.

While words can injure, they can also uplift and inspire. Most of us can recall things that significant adults in our lives said that encouraged and sustained us—the right words at the right time.

The words spoken by teachers, principals, and parents can have a particularly strong resonance across a lifetime, for good or for ill.

Which words encourage and sustain you? Which words disempower?

What are our “basic” needs?

As I have spent time in recent years listening to the life stories of individuals who were in hospice care I realized that their stories of resilience often had roots in the unmet needs of childhood.

Many of those needs clearly fit into Abraham Maslow’s “Hierarchy of Needs” which began with the physiological requirements of life and continued with safety, love and belongingness, esteem, and self-actualization needs. (He later added cognitive, aesthetic, and transcendence needs to the list.)

But some of their stories revealed unmet “needs” that, while implied in Maslow’s hierarchy, are worthy of special emphasis:

• Being seen and known for who we really are,

• Feeling accepted and appreciated for those qualities, and

• Being treated with dignity and respect.

Because those needs emerge during our earliest years, they have important implications for schools.

Therefore, it is essential that principals and teachers:

• Create classrooms that ensure that all students are known, appreciated, and respected; and

• Establish school cultures that satisfy teachers’ needs in those areas because without such a culture young people are far less likely to have those needs met in their classrooms.

In your experience, what do people “need” to lead physically and emotionally healthy lives, and what roles do schools play in satisfying those needs?

Our last good day

A hospice patient very near the end of her life after an extended illness told me that she regretted not having been aware of her last good day until it was well behind her.

That day went unnoticed because it was likely the same as many other days that also went unnoticed.

What she was sorting out for herself, I think, was that like most of us she had not really appreciated what she had until it was gone.

That conversation encouraged me to develop the habit of reflecting each day on the things for which I am grateful, a very simple exercise that draws my attention to the presence of many things I would otherwise take for granted.

Living in the moment with an awareness of appreciation requires vigilance and discipline.

Fortunately, when we drift away from the moment, as we inevitably do, each new moment is an opportunity to reclaim that awareness and gratitude.

What do you do, or might you do, to notice and appreciate the moments of your days?

How school leaders and hospice patients may be more alike than you think

IMG_1365

My work has two parts. In my “day job” I serve as a “thinking partner” to school leaders and leadership teams as they seek to continuously improve the quality of leadership, teaching, learning, and relationships in schools.

My second “job” is that of a hospice volunteer, a role that is at least as rewarding as my paid employment. As a volunteer I have two primary responsibilities—supporting hospice patients and their families as a “personal historian” so that they can capture and preserve their life stories on video, and facilitating grief-support groups for those who have lost loved ones.

While my professional and hospice responsibilities may seem quite different, they have important similarities:

Both offer possibility and expand human potential. As a thinking partner I enable educators and students to learn and perform in ways that they may previously have thought impossible. As a hospice volunteer I support patients and their families in experiencing their remaining time together in the highest-quality way possible.

Both involve systems that are often severely stressed. Outside forces such as state and federal policies and declining resources can stress the systems in which educators work and their relationships with one another. Likewise, hospice patients and their families are often stressed in understanding and meeting insurance requirements, managing doctors’ appointments, and addressing family relationship issues, among other challenges.

Both require that those involved experience the inevitability of change, whether or not they choose it. Impermanence is not an abstraction to educators and to hospice patients and their families as they grapple with the choices they have been given to find the best possible path forward.

Both remind me of the wisdom of Theodore Roosevelt’s counsel: “Do what you can, with what you have, where you are.” While there are times to challenge the “givens” and to advocate for new ways, sometimes the realities of situations require that we accept, as the Serenity Prayer reminds us, the things we cannot change, at least for the time being.


Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 4,619 other followers

Archives

Categories

Recent Twitter Posts