By Michele Chaban, MSW, RSW, PhD, University of Toronto, University of Wales, Wilfrid Laurier University
as published in "The Newsletter of the Rapid Response Radiotherapy Program of Toronto Sunnybrook Regional Cancer Centre" August 2006
...The world teaches us that cultures collide. Cultures in health science are no different. Inter-professional thinkers such as Ivy Oandeson, Chair of Inter-Professional Studies at U of T, suggests that health science is a culture and each profession is its own distinct culture. The disciplines bring their diverse ways to all our processes in the hopes of enhancing outcomes in patient care, education, research, etc. Conflicts within teams or between professional cultures are often based on competing values, beliefs and practices. The conflict can escalate for many reasons, but de-escalation takes place through dialogue and time. It is my experience that this can build and fortify a team. Not dealing with the conflict, or having one culture determine processes and outcomes encourages cultures in conflict. Patients, families and professional caregivers suffer for these value based battles.
If you consider inter-professional teams as cultures, ask yourself: does your team exhibit cultural competence between and amongst the disciplines? Is there a democracy of disciplines or a dominant profession? If so, does this dominant culture use its position to facilitate the other disciplines or determine them? What will you do to maintain the mosaic of care?
How we retain Canadian values in Canada’s health care system is more complex than having a food fair at lunch. Honouring diversity means the once hierarchical models of practice must flatten and function as inter-professional teams equitably. The once-separatist silos of the professions will hopefully build bridges between and amongst themselves while not losing the inherent integrity of each professional culture, while allowing patients and families access to all disciplines. To have equity and access, the team must educate each other and those they serve. This means a body of knowledge must be created, conveyed and be available on a continuum for those who need it.
How can this be done? Firstly, viewing ourselves as distinct cultures changes the phenomenology of how to view and interact with inter-professionalism. It bears more responsibility for all of us, especially the dominant culture(s). Secondly, consultation and collaboration are skill sets we acquire, but are seldom taught. It is assumed we know how to exercise this specialized form of communication. Learning how to consult and collaborate within an inter-professional team is one step towards enhancing team function, dealing with inter-professional diversity, honouring difference and, most importantly, mediating inter-professional cultures. Being true to Canadian values in our health care system means finding a way to honour our differences and build the mosaic, rather than allowing ourselves to become a melting pot, i.e., we all do bio-psycho-social-spiritual care or act as silos in solitude.
In a system dedicated to productivity, high-performance outcomes, we may have to find ways for the spirit in the machine of health care to manifest itself. We and they are human – we are more than our functioning. It is only if we exercise our humanness, both at the bedside and with each other, that we will keep the system person-centred and able to tolerate, if not celebrate, each other’s diverse ways. Then, truly, we will be ensuring the integrity of Canadian culture in our health care system.
...though soft you tread above
We think of you every day, in every way, happy and sad, crappy and mad, and mostly just glad glad glad we knew you. We talk of you every day sweetie. Mia is now playing with your pink pig and your fridge country music animal game you loved so much. On this sad anniversary, here's a song I used to whistle to you, you probably heard it at the big house because Terry loves to belt it out. We changed some words for you. O Danny Boy apparently isn't from Ireland but that is ok because you ain't either, despite your fire and rightous love of potatoes. You know we love you peach more than we can say.
And here's your sister Mia wearing one of your favorite jerseys. Hi sister Sasha!
O Sasha girl, the pipes, the pipes are calling
From glen to glen, and down the mountain side
The summer's gone and all the roses falling
It's you, it's you must go and we must bide
But come ye back when summer's in the meadow
Or when the valley's hushed and white with snow
For we'll be here in sunshine or in shadow
Oh Sasha Bella, oh sweet peach, we love you so
But when ye come and all the flow'rs are dying
If we are dead, as dead we well may be
Ye'll come and find the place where we are lying
And kneel and say a HI HI there for we
And we shall hear though soft you tread above us
And our graves will warmer, sweeter be
For you will bend and tell us that you love us
And we shall sleep in peace until you come to us.
And here's your sister Mia wearing one of your favorite jerseys. Hi sister Sasha!
Tissue Plasminogen Activator and Management of Complicated Parapneumonic Effusions
Effectiveness and Safety of Tissue Plasminogen Activator in the Management of Complicated Parapneumonic Effusions concludes "Early administration of intrapleural tPA seems to be a safe and potentially effective treatment in children with complicated parapneumonic effusions. Randomized controlled trial evidence is needed to confirm this finding."
Dec 30 23.50 tPA lung dilated to 2 ml NS
(time? @ [crossed out] Put 2ml in ob?structed lumen (don't flush)
Leave 2h in site
Pull back thereafter, then flush with NS [normal saline]
Dr. T. Jaecklin
Dec 30 23.50 tPA lung dilated to 2 ml NS
(time? @ [crossed out] Put 2ml in ob?structed lumen (don't flush)
Leave 2h in site
Pull back thereafter, then flush with NS [normal saline]
Dr. T. Jaecklin
Bringing Bravery Hearts to Red Cross Children's Hospital in Cape Town
Canadians Corinne Bloom and Darren Enkin created the Bravery Hearts program to recognize sick kid's bravery and to make them smile. The program begun at SickKids Hospital in 2003 and is now at over 20 paediatric hospitals across North America. Toronto based Sandylion Sticker Designs, the world's largest designer and manufacturer of stickers and scrapbooks, supplies SickKids patients with stickers and these gifts cue family and friends to buy their own favorite stickers as drop-by gifts.
Sasha loved peeling and sticking and stuffing her bead necklace into her ice cream container and feeling the different coloured and shaped beads. Recently Sasha's grandfather Henry visited Red Cross Children's Hospital and its fund raising armThe Children's Hospital Trust and they loved Bravery Hearts and so we are excited that Darren and Corrine will help bring the program to Africa (and will make sure there are lots of stickers too). The 50 year old Red Cross War Memorial Children's Hospital is affiliated with University of Cape Town for paediatric research and as the largest paediatric hospital in Africa takes on complex referrals continent-wide.
Sasha loved peeling and sticking and stuffing her bead necklace into her ice cream container and feeling the different coloured and shaped beads. Recently Sasha's grandfather Henry visited Red Cross Children's Hospital and its fund raising armThe Children's Hospital Trust and they loved Bravery Hearts and so we are excited that Darren and Corrine will help bring the program to Africa (and will make sure there are lots of stickers too). The 50 year old Red Cross War Memorial Children's Hospital is affiliated with University of Cape Town for paediatric research and as the largest paediatric hospital in Africa takes on complex referrals continent-wide.
Pillow Angel: freezing growth
When I first read about Ashley I could only respect the incredibly difficult situation she and her parents were in. Aside from the sympathetic overviews of the ethics and critiques of the parents choices and the incredible respect for the care they put into explaining about Ashley on their blog I thought of a fragment of a conversation we had during one of Sasha's clinic visits as we waited in her cardiologist's office: if only she didn't grow anymore she wouldnt need more cardiac surgeries.
Releasing the spirit
Bubby was with Sasha when she died and she felt her spirit leave as Sasha's chest heaved the last time and she no longer saw Sasha in her body. We are not our bodies she said, our smile and nature and those things that make us who we are are in our souls. When her husband died it felt right to donate all the clothes to Goodwill although a daughter asked her how she could give away Daddy's clothes. Bubby passed on Peter Goddard's review of Robin Pacific's "Shelf Portrait" whose installation is designed to give away a large collection of her and her husband Terry McAuliffe's books: "I've kept some things. I gave some things to family and some to Goodwill. The last things I'm giving away are his books. It's as if his mind and psyche were leaving the house." In the words of the Redhead Gallery: "Shelf Portrait is an exhibition that renders an act of generosity into a work of art." What a wonderful act of generosity. Its as if she no longer feared needing to keep his books to be close to his spirit. I would setup a collection next door of Sasha items we cannot conceive of letting go yet. Bubby keeps her fathers keys hanging in her kitchen and together with a pail of copper nails are objects that reconnect her to her father. She recently decided to become an organ donor because although she didn't mind her dead body feeding the earth she thinks the better way is to donate organs that live on and help another soul's body.
Shelf Portraits runs to January 27. The Redhead Gallery is open Wed-Sat 12-5 at 401 Richmond Street West, Suite 115
Shelf Portraits runs to January 27. The Redhead Gallery is open Wed-Sat 12-5 at 401 Richmond Street West, Suite 115
For the fathers: tools for male grief work by Stephen Jenkinson
People shared ideas on death and an afterlife in their words of solace: Sasha is in a better place, she put back on her angel wings, she is at peace, she is no longer in pain. We achnowleged Sasha was dying and accepted and then embraced her return home after councelling at the Temmy Latner Centre. We all struggled to articulate Sasha's death and engaged in a discussion on the Alagille Board: how could Sasha be in a better place (ultimately) when she was no longer with us? We flipped back and forth throughout the decision to cease blood transfusions. Were we only thinking of her life quality or of our convenience? Had we done enough, not enough or too much? Many people gave us a lot of support. One person gave us permission to grieve and specific ideas to work with her life and death and I recently reread "On Grief: A Workshop for Men", one of many useful sharings traversing grief work, money, inheritance, relationships, shamanism, souls, hand-made objects, wilderness, life's tasks and more. They encompass notions of the veil in at least two ways and offer a relevant strategy to anyone who has lost loved ones, particularly fathers and brothers. Rather than summarise as is customary, I wish to place Stephen's words directly on Sasha's blog as we place little stones when we visit Sasha's grave.
"Death is a rumour for most of us. It is something we hear about second hand. All kinds of institutions are set up whose unacknowledged purpose is to shield us from the direct experience of death, loss and the diminishment of life, whether it be our own or that of a loved one, friend or neighbour.
When death comes close, most of us who are otherwise competent adults become stumbling, inarticulate amateurs. Approaching death deliberately and consciously is very hard to do. For a lot of reasons, this experience is a particularly punishing and humiliating one for men. We become strangers to the people around us and to ourselves, and often we are deeply disappointed in our responses. We think women grieve better.
Grief is work for all of us. It is part of a life's work...In grief rituals we are practicing behaviours that consciously and intentionally move us out of our ordinary awareness and into the experience of the pain of grief. The important aspects are that you do it consciously and that you in some way honour and acknowledge your grief in the process. Men in our culture grieve through task.
For a man to share his grief, he needs to know that he is respected. For a woman to share her grief, she needs to know that she will be related to. The work of talking about their grief is usually put off until the men know that they have the respect of the other men. They see their grief as a burden ... that their grief has no purpose or meaning.
...A common thread in the world's wisdom and shamanic traditions is the identification of forgetfulness or amnesia as a threat to spiritual wellbeing, individual, communal and cosmic. Knowing about good and evil was an iffy proposition in the Garden of Eden, but once known, the story goes on to show, the consequences endure. In the West, we tend to have an unexamined, undisciplined, untested and unconscious view of the dead. Typically, we nurse along the conviction that those who have died somehow know more than we know. Their passage out of this world has bestowed upon them this 'higher consciousness'. They know everything, and this knowledge has been bought with their life. In that respect they join God and share in God's omniscience.
A subtler piece of this conviction is that those who have died have passed beyond the experience of need. They have been taken up by the Shepherd and no longer want. Having no needs, no desires, they are free and they are at rest. They live far beyond this veil, subsequently, and their achievements in death remove them from us. When a loved one dies and leaves us behind, our experience is typically an awe-ful, sharply felt need for the old companionship, the old attachment, the old assurances that came with the deceased's presence. Part of our suffering comes from the inevitable conclusion that we are alone in needing this attachment. The need is from one direction only.
Many men have told me of the grim, defeated experience of trying to retain some furtive presence of the loved one, somehow, and of how futile these attempts seem, how impossible, and of how mute the other side is, and of how unpresent. There is a lot of anger in this experience, and under that a lot of sorrow, and under that a lot of psychic and spiritual poverty....
Martin Prechtel says that "every Tzutujil started out in life as a sincere amnesiac who spent the rest of his or her life putting back together his or her memory of the other worlds, enough to serve the greater good of the village and the World". That is a beautiful phrase - sincere amnesiac - because it brings very well the wobbly intention that is both good and errant: the Tzutujil person commits himself or herself to try to remember something they don't at present even know - for what purpose they were born. Part of life's project for these people is to discover that they have a life's project, and what it is. A hint is to be found in the stories that tell of the world the soul has come from, into this one.
To redeem the rememberer in his or her wobbly pursuit, Mayan spirituality proposes a perfect symmetry. The gods, the spirits, the ancestors - Those Not Here Now - depend on this very remembrance as their food and sustenance. A little remembering of them makes them present, brings them near, encouraging the memory of them a little more, bringing them nearer still, everyone in the circle nourished by the passing around of this gift.
Death is a very good teacher. Someone else's death has a great deal in it for you, and your own death even more. The imminence of death rattles the old patterns of automatic thinking, involuntary obedience, unconscious suffering. It dares you to find them still meaningful, purposeful, necessary."
"Death is a rumour for most of us. It is something we hear about second hand. All kinds of institutions are set up whose unacknowledged purpose is to shield us from the direct experience of death, loss and the diminishment of life, whether it be our own or that of a loved one, friend or neighbour.
When death comes close, most of us who are otherwise competent adults become stumbling, inarticulate amateurs. Approaching death deliberately and consciously is very hard to do. For a lot of reasons, this experience is a particularly punishing and humiliating one for men. We become strangers to the people around us and to ourselves, and often we are deeply disappointed in our responses. We think women grieve better.
Grief is work for all of us. It is part of a life's work...In grief rituals we are practicing behaviours that consciously and intentionally move us out of our ordinary awareness and into the experience of the pain of grief. The important aspects are that you do it consciously and that you in some way honour and acknowledge your grief in the process. Men in our culture grieve through task.
For a man to share his grief, he needs to know that he is respected. For a woman to share her grief, she needs to know that she will be related to. The work of talking about their grief is usually put off until the men know that they have the respect of the other men. They see their grief as a burden ... that their grief has no purpose or meaning.
...A common thread in the world's wisdom and shamanic traditions is the identification of forgetfulness or amnesia as a threat to spiritual wellbeing, individual, communal and cosmic. Knowing about good and evil was an iffy proposition in the Garden of Eden, but once known, the story goes on to show, the consequences endure. In the West, we tend to have an unexamined, undisciplined, untested and unconscious view of the dead. Typically, we nurse along the conviction that those who have died somehow know more than we know. Their passage out of this world has bestowed upon them this 'higher consciousness'. They know everything, and this knowledge has been bought with their life. In that respect they join God and share in God's omniscience.
A subtler piece of this conviction is that those who have died have passed beyond the experience of need. They have been taken up by the Shepherd and no longer want. Having no needs, no desires, they are free and they are at rest. They live far beyond this veil, subsequently, and their achievements in death remove them from us. When a loved one dies and leaves us behind, our experience is typically an awe-ful, sharply felt need for the old companionship, the old attachment, the old assurances that came with the deceased's presence. Part of our suffering comes from the inevitable conclusion that we are alone in needing this attachment. The need is from one direction only.
Many men have told me of the grim, defeated experience of trying to retain some furtive presence of the loved one, somehow, and of how futile these attempts seem, how impossible, and of how mute the other side is, and of how unpresent. There is a lot of anger in this experience, and under that a lot of sorrow, and under that a lot of psychic and spiritual poverty....
Martin Prechtel says that "every Tzutujil started out in life as a sincere amnesiac who spent the rest of his or her life putting back together his or her memory of the other worlds, enough to serve the greater good of the village and the World". That is a beautiful phrase - sincere amnesiac - because it brings very well the wobbly intention that is both good and errant: the Tzutujil person commits himself or herself to try to remember something they don't at present even know - for what purpose they were born. Part of life's project for these people is to discover that they have a life's project, and what it is. A hint is to be found in the stories that tell of the world the soul has come from, into this one.
To redeem the rememberer in his or her wobbly pursuit, Mayan spirituality proposes a perfect symmetry. The gods, the spirits, the ancestors - Those Not Here Now - depend on this very remembrance as their food and sustenance. A little remembering of them makes them present, brings them near, encouraging the memory of them a little more, bringing them nearer still, everyone in the circle nourished by the passing around of this gift.
Death is a very good teacher. Someone else's death has a great deal in it for you, and your own death even more. The imminence of death rattles the old patterns of automatic thinking, involuntary obedience, unconscious suffering. It dares you to find them still meaningful, purposeful, necessary."
Feeding the Gilgul: reconciling the afterlife in Indigenous and Kabbalist traditions
We struggled with the purpose of Sasha's life. She lived for 744 days. She laughed with us and smiled and loved and showed great joy yet she also cried whenever she awoke until she had her bottle in her mouth. The hospital took every effort to control the pain of all their interventions. Outside the hospital, we think she experienced great discomfort from the itching caused by her Alagille Syndrome and we expect she suffered some discomfort as damaged liver continued to swell and develop suspected portal hypertension. After the second surgery complications she suffered morphine withdrawal, developed a jejunal fistula and went without any food for over two months. Fed by a permanent IV during her last 6 months of life, she scratched at where the tubes entered and were sutured to her flesh. She experienced so many pokes and pricks. She could never tell us her pain nor could we explain it to her. Despite everything she experienced she never feared needles or cap changes or nurses or doctors or the hospital doors. This blog is testament to her determination and spirit.
Within the Buddist tradition, the soul accrues karma by suffering and devotes believe Sasha chose us because we could give her the love and care she needed. Within the humanist tradition she was defined by a missing gene and her life spurs us to knowledge and shows the potential compassion of our society. Within the Jewish tradition from Kabbalah she could be a Gilgul or reincarnated soul who returns to earth for a short time to fulfill a purpose. Within some indigenous traditions she is now in the spirit world and needs to be fed with remembrance and good deeds that bring her honour. As a humanist, born into a Jewish family, the best way I can approach why she was here and how I reach her 'there' is to connect reincarnation in Buddism and a strand of Judaism (Kabbalah) to the indigenous and Eastern notion of 'feeding' the dead. So I feed this Gilgul I was privelaged to know by learning lessons from how we cared for her and helping other kids in need.
Within the Buddist tradition, the soul accrues karma by suffering and devotes believe Sasha chose us because we could give her the love and care she needed. Within the humanist tradition she was defined by a missing gene and her life spurs us to knowledge and shows the potential compassion of our society. Within the Jewish tradition from Kabbalah she could be a Gilgul or reincarnated soul who returns to earth for a short time to fulfill a purpose. Within some indigenous traditions she is now in the spirit world and needs to be fed with remembrance and good deeds that bring her honour. As a humanist, born into a Jewish family, the best way I can approach why she was here and how I reach her 'there' is to connect reincarnation in Buddism and a strand of Judaism (Kabbalah) to the indigenous and Eastern notion of 'feeding' the dead. So I feed this Gilgul I was privelaged to know by learning lessons from how we cared for her and helping other kids in need.
Living with Sasha's spirit
We have been struggling with the direction of this blog. How to maintain a focus on Sasha over time rather than, as it felt, ourselves and our anguish and fears and hopes? Sasha and us are inextricably bonded and we are the light to her memory and the tribute to her potential and the connector to all those she never met. But as the months pass, we struggle to feel the transcendent beauty of Sasha from the memory fragmentation caused by the experience. There have been fewer and fewer pink entries: Mom dreams of Sasha all the time, Dad doesn't but the blog is part of his awake dreaming. To remember in the sense of reattaching is to reconnect body and spirit. If death does not make us spiritual geniuses as Stephen Jenkinson reminds us, it does sensitize us to the spirit. After life, there is spirit. In life there is spirit. Sasha's spirit, I conclude, is all around. We simply have to feel it. To reconnect and remember in a positive way is to build new moments with Sasha in our lives as we help others. This is one positive sense of the notion 'move on' that we struggle with; so not move away from pain or grief or anger but live with her in new moments in a new world, where we re-member a dismembered daughter on a new path in a wider world where this peach now plays. The future of this blog is to travel in a new world of connections and networks and initiatives and kid's smiles where Sasha's spirit will be happy.
And Sasha's spirit is on the go, reaching out to be lifted, calling out in excitement and discomfort, walking hand over hand in an intricate coordination of little feet shuffling skinny legs supporting a swollen belly, long delicate fingers always exploring and touching and shining yellow eyes radiating, supervising, learning and loving, oblivious to her remarkable physiology, huffing and puffing without fear of the gods swirling around the hospital.
And Sasha's spirit is on the go, reaching out to be lifted, calling out in excitement and discomfort, walking hand over hand in an intricate coordination of little feet shuffling skinny legs supporting a swollen belly, long delicate fingers always exploring and touching and shining yellow eyes radiating, supervising, learning and loving, oblivious to her remarkable physiology, huffing and puffing without fear of the gods swirling around the hospital.
Remembering the dead, wondering about the meaning of a life
While we were in hospital and realizing that Sasha was nearing the end of her life we also realised that we couldnt easily remember her pre-hospital times. When she was intubated we worried we would never hear her voice and would play over her little sounds between us. All those moments over eighteen months started to pool like mercury around 'memories' from photos and videos. We work to remember and feel other memories. It is scary to have difficulty remembering the reality of our time with our flesh and blood.
Is it because Sasha was with us only twenty four months? Was it some conditionality in our focus imposed by her uncertain prognosis? Or because we were tired during the good times and very tired during the 5 final months at SickKids? Did grief at the end while she was alive blur earlier memories? Did I spend too much time behind the camera lens. As I stop to deeply think back, memories return. I just thought about being with her, rocking her to sleep with my hand on her back, wondering how much time we had left together. I had those thoughts many times, during the good times and the bad. The memories do come back with work but it has only been 6 months.
When people do work as a tribute to their dead child, it is both to help others and to perpetuate a memory of one who was once alive. Why are children born who cannot survive? Why did she die? Where did she go after death? What could we have done differently? What was learned from her life?
Is it because Sasha was with us only twenty four months? Was it some conditionality in our focus imposed by her uncertain prognosis? Or because we were tired during the good times and very tired during the 5 final months at SickKids? Did grief at the end while she was alive blur earlier memories? Did I spend too much time behind the camera lens. As I stop to deeply think back, memories return. I just thought about being with her, rocking her to sleep with my hand on her back, wondering how much time we had left together. I had those thoughts many times, during the good times and the bad. The memories do come back with work but it has only been 6 months.
When people do work as a tribute to their dead child, it is both to help others and to perpetuate a memory of one who was once alive. Why are children born who cannot survive? Why did she die? Where did she go after death? What could we have done differently? What was learned from her life?
Subscribe to:
Posts (Atom)