Organised by a committee of the Worldwide Hospice Palliative Care Alliance, World Hospice and Palliative Care Day is a "unified day of action to celebrate and support hospice and palliative care around the world." This special day is always celebrated on the second Saturday of October and has a different theme each year. This year's theme is "Palliative Care – Because I Matter!"
The Worldwide Hospice Palliative Care Alliance chose this theme as it "centers on the lived experience of people affected by serious illness, looking at what matters most, including the often-overlooked financial impact of palliative care needs on individuals and households." The alliance notes that "the theme also contains elements of human rights and justice, asking: If I matter, then why am I not getting the care I need?"
This year is the centenary of Dame Cicely Saunders, founder of the modern hospice movement. It's fitting, then, that this year’s World Hospice and Palliative Care Day theme draws its wording from her iconic quote: "You matter because you are you, and you matter until the end of your life."
Some personal reflections
To mark World Hospice and Palliative Care Day I share two excerpts from my final self-evaluation of my chaplain residency experience at Abbott Northwestern Hospital (September 2017–August 2018).
The first excerpt focuses on my understanding on spiritual assessment as based on an understanding of behavior science and a grounding in theology. Here's what I wrote . . .
My spiritual assessment of a patient and their situation comes very naturally to me and occurs through the interaction I facilitate and engage in. The sense I have about this communication/interaction (along with feedback I’ve received from both patients and staff) is that it is genuine; that I relate emotionally and spiritually in a very authentic way, a very human way. In reflecting on this, I realize I’ve had a lifetime of honing the ability to relate in this way, perhaps without even realizing it. Through my coming out journey – or perhaps better still, the ways I’ve chosen to respond to the challenges of coming out and all the questioning and searching such an experience is capable of facilitating – I’ve come to integrate much insight and experience relating to both “behavior science” (Jungian/Sacred Psychology mostly) and “theology,” primarily sacramental theology (in its broadest sense) and the embodied theology inherent to the mystic/prophetic spiritual path, a path that runs deep within all the great religious traditions of humanity.
I think of the strange experience I had [on] Sunday, August 12. I’d just finished a 24-hour on-call shift – a very eventful shift. I was walking to the hospital parking ramp, reflecting on the powerful pastoral encounters I’d just experienced. I also knew that I’d be meeting later that day with the young man I’d first meet at the hospital and with whom I’ve been accompanying in a supportive way on his ongoing journey towards recovery from addiction. The morning was very still and clear and for reason I can't explain, the lyrics of Kate Bush’s song “Lyra,” from the soundtrack of the movie The Golden Compass, began resounding gently in my head.
Where are our lives
If there is no dream?
Where is our home?
We don't know how
There will be a way
Out of the storm
We will find home
And her soul walks beside her
An army stands behind her
Lyra, Lyra
And her face, full of grace
Two worlds collide around her
The truth lies deep inside her
Lyra, Lyra
And the stars look down upon her
As darkness settles on her
Lyra, Lyra
Who's to know
What's in the future
But we hope
We will be with her
We have all our love to give her
Oh, Lyra, Lyra
It’s a very pagan song, when I stop and think about it. Not surprising, really, considering the source material is the trilogy His Dark Materials by Philip Pullman, and that the song is written and performed by Kate Bush, a singer-songwriter of whom it’s been said has “her own mystery school . . . [a] unique strand of Shaivism, Dionysian and Druid philosophy, loosely wrapped up in a song and dance tradition.”
Expanding on this, Martin Glover shared the following reflection in 2014:
There is a barrenness in religions today. Whether in Christianity, Islam or false prophet new age gurus, humanity is rudderless, bedazzled by materialism. Kate’s communion with nature is the antidote. It is a call to joy, a celebration of the sublime. It’s about the intoxication of love and the ecstasy that follows. [It's] where wisdom lies, hidden deep within its mystical and poetic roots.
Kate’s "religion" is the tiny spark of light that defeats the dark forces that seek dominion over the natural world. . . . She exemplifies English pagan beauty. A dark timelessness and stillness surrounds her wild abandonment, whilst her voice charges at you like Boudicca returned, riding a golden chariot of weird melody, harmony and bitter dissonance.
As strange as it may sound, I feel there’s something about my approach to chaplaincy in all of this; my approach to life, actually. For if this residency has revealed anything to me, it’s that I’m well along the path of integration. I suppose some might think that this is a grandiose statement, but I see it instead as a simple statement of self-evaluation.
I’m also aware that for me the boundaries between the different aspects of my life are thin and nebulous. I “walk in many worlds” and, inspired and compelled by a deep inner wisdom honed over the long and serpentine course of my journey as a queer man, I cross boundaries intuitively and in ways that ensure no one is damaged or hurt – myself included. In short, I feel that there is something of the shaman in me. And I’m okay with that.
Anyway, perhaps such thoughts and realizations were welling up within me that Sunday morning as I walked to my car after some pretty intense patient encounters, and with Kate Bush’s “Lyra” in my head. I suddenly found myself slowing my pace, looking up at the sun shining through the trees, and saying out loud to myself, Maybe everything I’ve done and been through has brought me to this moment and to this work!
As soon as I said these words my pager went off in my pocket. My initial thought was, Oh, great! The universe is now going to totally debunk that thought by giving me a horrendous situation to deal with! Yet when I looked at the pager there was no such message on it. It fact there was no message at all. Yet its going off at that exact moment was, I feel, some kind of affirming message; a way that the Divine, the Universe, whatever name one wants to use, was mysteriously telling me to, Hey, pay attention to that thought, to that realization, that truth!
The second excerpt I share from my August 2018 final self-evaluation of my chaplain residency focuses on what it means to me to be a "professional in ministry." Specifically, this part of the evaluation asked me to describe my "pattern of interacting with other professional staff, both nurses and doctors, with respect to collaboration and dialogue." Following is how I responded to this question . . .
Something significant I can highlight in relation to this question is the way I’ve worked with and have been accepted by the Palliative Care team at Abbott. It’s been quite something, when I stop and think about it. It’s been like a learning/mentoring experience which since February (almost mid-way through my residency) has run parallel to, though certainly not separate from or in competition with, my “regular” chaplaincy learning/mentoring experience.
Above: With members of the Palliative Care team of Abbott Northwestern Hospital (along with one of these member's children) – August 22, 2018.
The focused work of palliative care has ensured that I’ve had numerous encounters with staff – doctors included. These encounters have often taken place within the context of some very intense family care conferences. I recognize that I’m present at these conferences as a professional member of the hospital staff and the patient’s care team. But I’m also something else, something other – a professional who is capable of doing and being something unique: a listening and caring presence that is an intermediary between the world of the hospital and that of the patient.
I think this unique role can best be illustrated by the fact that when a care conference ends I don’t exit with my fellow hospital professionals. I stay and make myself available to the family. This simple action conveys, I believe, something of the special role of the chaplain. We’re of the hospital yet we’re also of (and about) something other. And the thing is, I do this “something other” without offending my fellow hospital professionals; without “talking sides.” Indeed, as well as supporting, say, the family involved in a particularly tough case, I also often find myself having a quiet, supportive word with, say, a nurse who is also involved in this same difficult case.
I also think that being a professional in chaplain ministry means that you are available as a listening and grounding presence to everyone you encounter in the setting within which you’re working. For me in this past year, this has meant that I have authentically connected and interacted with janitorial staff, the folks in the gift store and the cafeteria, and a number of other colleagues with whom I’ve forged bonds of comradery and friendship. I have to say that I’ll miss seeing and interacting with all of these folks as they’ve become part of my daily life.
Well, as it turns out I will continue to see my colleagues and friends at Abbott Northern Hospital as from the beginning of October until early December, I will be covering for the Palliative Care Chaplain every Tuesday and Thursday. Such an arrangement is possible as my position at Mercy Hospital is a part-time one until January 1st next year.
For more on my experience of interfaith chaplaincy, see the previous Wild Reed posts:
• Chaplaincy: A Ministry of Welcome
• Interfaith Chaplaincy: Meeting People Where They're At
• Spirituality and the Healthcare Setting
• Out and About – Autumn 2016
• Out and About – Spring 2017
• Out and About – Autumn 2017
• Out and About – Winter 2017-2018
• Out and About – Spring 2018
• Out and About – Summer 2018
• The Prayer Tree
• Beloved and Antlered
• Welcoming the Return of Spring
• Celebrating the Summer Solstice
Related Off-site Links:
From India to Iowa, the Value of Palliative Care – Katelyn Harrop and Ben Kieffer (Iowa Public Radio News, October 9, 2018).
How to Talk About Dying to Someone Who Is Dying – Francesca Gillett (BBC News, October 19, 2018).
“I’m a Friend at the End – Why I Became a Death Doula” – Richard Wagner (The Amateur's Guide to Death and Dying, October 23, 2018).
The Cost of Not Talking About Death to Dying Patients – Colleen Chierici (The Amateur's Guide to Death and Dying, October 15, 2018).
Transitions: My Autumn to Winter – Ashley T. Benem (A Sacred Passing, December 17, 2015).
Facing Mortality Head On – I. J. Woods (Conscious Departures, October 24, 2012).
Conversations That Matter – Catherine Musemeche (At the End of Life, September 6, 2012).
“Our Souls Reach Out for What’s Nourishing.” An Interview with Howard Mansfield – At the End of Life (May 18, 2012).
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