Showing posts with label The Temmy Latner Centre for Palliative Care. Show all posts
Showing posts with label The Temmy Latner Centre for Palliative Care. Show all posts

'The fact of death should change everything'




We have been invited to participate in an advanced practitioner's workshop March 3 at the Max and Beatrice Wolfe Centre on a parent panel and we met with Stephen Jenkinson to discuss. We sat in the very same small office on the very same seats as when we first met to talk about Sasha in May 2006. Stephen holding Sasha's sister Eve while we talked about tricky communication with parents about palliative care embodied the coexistance of life and death that is the essence of the work at Max and Beatrice Wolfe Centre.

We all defer to a parent's presumed competence and experience. You know I ask audiences what business are you in? Well, I am in the business of democratizing your and your children's right to a good death. And there is a right and with that right there is a responsibility. With knowledge there are consequences. If dying is a realistic possibility, parents should know that and act accordingly; there is no opt out clause once you let that knowledge in. There are times when more life equals more death. You need someone who is an expert in dying and not just social workers or psychologists. I asked doctors in the CCCU, how many of you came into medicine to help dying children? Noone put up their hand. How many of you are trained to help dying children? There were some hands. Then I ask how many of you cared for a dying child this week. Everyone looks around and puts up their hand. Someone has to speak to parents and share disagreement over continuing. You know, when a number of people on the team feel "This cannot go on". We go by the "do no harm" principle with those in care, part of the harm is a lifelong effect on the family. And how do you deal with parents who have different perspectives, like yourselves. Staff have to learn how. And we know if parents try opt out, there can be efforts to gather them back in. We have this wrong assumption: working with dying is just a subset of our experience and what we do. I was just at a big palliative association where the presenter referred to a 'four year old who would not have a normal life'. I said 'Wait, he will have a normal 4 year old life. Plus an extended stay at hospital.' What do you need to do during a palliative care discussion? Well first off, not in the hallway! And this is not about brute speculation. You need to quiet things down and then really engage the parents. And this is not a question of knowing, you knowing or us telling you. There has to be room for some mystery. You know that statistics is just a puny lunge: if we offer several statistical scenarios, what are parents going to choose? Parents will choose to hear the best outcomes. And then we also have to agree that there are certain 'whys' I cannot and am not going to answer. The fact of dying should change everything but sometimes it doesn't.

These notes record fragments of the conversation. I tried to be accurate and faithful to Stephen's spoken style however any errors are mine alone. He is best heard in person.

A snapshot of the fundraising needs for paediatric palliative care at one Toronto centre of excellence

The Sasha Bella Fund for Family-Centred Care focuses our efforts on raising funds for SickKids Hospital for family-centred, interprofessional and palliative initiatives to help SickKids nurses, doctors and allied professionals continue to evolve advanced models for family communication. We think this is the best way for us to direct Sasha's experience to support other kids and care teams. We offer a parallel track to the highly successful large scale fund raising for expensive new equipment and research. While our focus is supporting critical 'soft' processes within SickKids Hospital we will forever be grateful for the sensitivity and expertise at The Temmy Latner Centre who, working with SickKids Hospital, organized a multi-disciplinary care team for Sasha in the community so that we could bring her home. Here are figures provided as of September 2007 by Temmy Latner Centre sharing the scope of the fundraising needs. All figures relate to The Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care.

Number of grief and paediatric palliative care referrals since May 2006: 136
Number of grieving or terminally ill children and their siblings supported since May 2006: 263
Number of community presentations since May 2006: 140
Number of classmates of grieving or terminally ill children seen so far this school year: 350
Number of people who did this work: 6
Number of new dollars needed to hire a counsellor skilled in children’s grief and palliative care: $80,000
Number of new dollars needed to develop and distribute education material: $10,000
Number of new dollars needed to buy equipment for teens to film their stories, for and about their families: $5,000
Number of new dollars needed to buy a years worth of journals and activity books for kids and teens: $2,000
Number of new dollars needed to fund a week long multi-media arts camp for kids and teens in The Unicorn Room: $3,000
The chance to make all of this available to the next child who needs us:
PRICELESS

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."

The Dr Jay Charitable Foundation : a paediatric palliative care funding success story


Dr Jay and Fern Bachter have raised 1.8 million for paediatric palliative care and are now meeting to build on their golf event successes to reach more sick kids and their siblings. The Dr. Jay Charitable Foundation website provides a huge amount of information about their quest:
"Adding life to a child's time, not just time to the child's life."

I attended a meeting on Wednesday night where Dr Jay laid out their successes and strategic goals and motivated us to think about how we could build out the network offering palliative care support and grief councelling. An exciting initiative is support for developing a paediatric component for the EPEC (Education in Palliative and End-of-life Care) program that began in the United States and that could be then brought to Canada.

The eight people around the table shared stories about fund raising successess: like a school care-athon for kids visited by politicians and fed by one of Golden Griddle's top execs personally, or social networking like the volunteer Time Raising initiative of The Framework Foundation.

Coincidentally, the following night I bumped into Anil Patel of Framework, Domenic Bortollusi of The Working Group who coded Framework and Paul McGrath, a technologist and journalist with the CBC. We were circling around what must be a common meme in volunteer and tech circles - what is a MySpace equivalent focused on connecting socially to help the sick and differently advantaged, green the world and reconnect communities to do good and have fun at the same time.

Dr Jay emailed me after reading Catherine Dunphy's article about Sasha in the Star and we spoke several times. The lightbulbs go off in their own time, however. The Dr Jay foundation supported the Max and Beatrice Woolf program at Temmy Latner Centre, the program that helped us bring Sasha home approaching 6 months ago. Jay and Fern were in our universe some time before we knew them.

Celebration of Remembering

The Temmy Latner Centre and the Max and Boutrice Woolf Centre for Palliative Care held a unique and deeply moving memorial to the children and adults who died in their care over the last year. The memorial was held in the beautiful Floral Hall at Edwards gardens which was the perfect setting with its natural stone construction and lovely flora of all kinds.

As caregivers and parents spoke, other parents and children and family members build a small but elaborate house made from sticks and boughs tied together with colourful ribbons and decorated with feathers and flowers. An oval cupped wooden frame with sheep wool was then inserted as the floor.

Into this house we placed small objects in memory of our loved ones. We put in a baby Raggedy that we bought from the 5 Fifty 5 shop at Sick Kids and one of Heather Rivlin's photos with Sasha holding her Raggedy on Mom's lap with the IV in the background.

Then the youngest and the oldest were invited to say a blessing and Henry carried Mia to stand around the house with other children and grandparents.

The tempo of the 2 hour memorial alternated between stories told from 4 microphones and the ever changing group of siblings and parents and grandparents constructing the house.

Celebration of Remembering house for the children and adults who died over the past year while cared for by the Temmy Latner Center, constructed by their families and filled with memories

Stephen Jenkinson introduced the ceremony as a time to re-member which he said was not the opposite of forgetting but of dis-member: we were here to reconnect with people separated from us. Jennifer told us about where they found each of the items used in the house and reminded us that the trees were a short time ago living things, connected to trunks. A duo sang and played violin of a melancholy and undefined music from 'The East'. And a number of doctors shared their special memories.

I feel privelaged to know such a deeply compassionate and spiritual team of care givers and, as the team members expressed over and over, they feel privelaged to care for our dying loved ones and then supporting the families when they grieve.

One woman related how she and her partner were married at home just before Olivia's death and I could feel that same sacredness she mentioned in the care and attention put into getting Sasha home again.

A little girl named Sage who was almost two joined in several times through the evening with loud shrieks of excitement that sounded so like Sasha.

Dr Russel Goldman, Sasha's doctor on the palliative care team, holds Sasha's sister Mia Ruby

It was very special to see Russell and have him hold Mia and play with her. As we heard from other doctors and nurses and specialists, we could see that the Centre attracted gentle positive people. I met Ceilidh the life specialist from HSC 4 who had worked with Sasha and Mom during the day when I was at work.

I was asked by Dr Chris Newman to speak about how the Center had helped Sasha and when I did speak I ditched my notes and spoke from my heart as I had noticed noone else used notes. My written words are a bit melodramatic, but true nonetheless. It would be nice to be able to write like you speak.

The evening was designed to help us reconnect not only to our loved ones but also to the people who became like family during intensely emotional and intimate moments and who then disappear from our lives.

Packets of sunflower seeds were placed at the door for planting because of their big happy faces.

It was a memorial unlike any other I have witnessed.

Thank you.






This seems the perfect spot to show you the two trees planted in Sasha's memory on Paint Lake:

Red maple planted by in honour of Sasha Bella Stein-Blumberg, fall 2006


Red maple planted by Henry and Marcia Blumberg in honour of their granddaughter Sasha Bella Stein-Blumberg, summer 2006

Heartfelt thanks to HSC palliative care and Temmy Letner Centre

It was a comfort to see Sasha's bravery and the Hospital for Sick Kids' efforts described in The Toronto Star and in addition to the doctors and nurses and specialists at HSC we do wish to add a very important thank you. We read the article several times with friends the day it was published and right away I wished there had been mention of the palliative care teams who helped us come home and enjoy a very special five weeks with our dying daughter.

Here was our Letter To The Editor, which unfortunately did not get published:
"Thank you for celebrating Sasha Bella's short, eventful life and all the dedicated doctors, nurses and specialists at Sick Kids hospital in "Sasha Bella, 2: Palliative Care Fighter". As the article highlights Sasha's final return home we add our thanks to Sick Kids Palliative Care, The Temmy Latner Centre at Mount Sinai Hospital and the Toronto Community Care Access Network who offered our sweet peach paediatric palliative medical, nursing and psycho-social support at home and helped us learn to nurse Sasha to lessen their interventions. We also thank Heather Rivlin and Now I Lay Me Down To Sleep for a palliative care photo session that continues to help us heal and grieve. In your planned giving, please consider supporting paediatric palliative care professionals to expand comfort to more families facing such unexpected and potentially devastating loss."

The article was titled "Sasha Bella, 2: Palliative care fighter: Babies can also be palliative patients, Fund aims to aid parents and staff" and ends with quotes about the need for more palliative supports for nurses and parents. While the heading emphasizes the fund for Sasha without mentioning the palliative care programs and professionals who support those who are dying and help those who are grieving.

Maria Rugg of Sick Kids Palliative Care had the incredibly difficult task of first discussions with two very tired parents who were absolutely not ready to think of their daughter dying. Maria was the gentle hand opening a very scary door. She supports kids and parents through death and bereavement and educates doctors and nurses on the importance of bringing palliative care considerations to the patient or parent as early as possible to allow for informed decisions about surgical plans and quality of life.

Dr Christine Newman works both at Sick Kids Palliative and the Temmy Latner Palliative Care Centre at Mount Sinai Hospital, the only centre currently caring for children dying at home. Chris worked behind the scenes to get us home after we contacted Dr. Larry Librach.

Stephen Jenkinson, the psycho-social director of the Temmy Letner Centre, met us while Sasha was not under his care and for that we are grateful. Steve lead us to our worst fears and helped us face the fact that Sasha was diminished with each daily blood transfusion. He disabused us of selfish hope and then waded into our grief with us, even as Sasha was alive. Steve connects death and life and grieving as constant life forces and believes that 'hope' can remove you from the present during the last months, weeks or hours of your loved one's time. I wish I listened closer and spent more of her final hours by her side rather than adding material to her website. Tim Wilson's GriefWalker is a striking documentary on Stephen's deep exploration of the grief cycle.

Dr. Russell Goldman, Sasha's physician on the Temmy Latner team, was in the picture from the first palliative care family meeting through to the final visit. He proscribed medicines, guided us as we struggled mentally with the last days and was a gentle and calming presence, accessible through a long weekend as he had precious time with his family and late into the evenings. His were the last doctor's hands to touch Sasha as he removed her PICC line. His smile lifted our spirits.

The nurses of Toronto Community Care Access Network, including Marg, Irena and Soritsa (excuse my spelling) who were scheduled to visit us 2-3 times a day and kindly supported us as we took on more duties so they only had to visit a couple times a week. We appreciate their gentleness and humor and graceful support as we worked to minimize their visits.

Palliative Care and Temmy Latner and Toronto Community Care Access Network might say they just did their jobs but they did it sensitively and positively and immeasurably added to Sasha's quality of life in her final days. Sasha stopped bleeding a day or two after we came home and I am convinced that was because she was happier and that the palliative professionials helped her decide to be with us for an extra precious five weeks outside the hospital.

In the article, Sasha is a "palliative care fighter". She was that but she was first and foremost our very sweet first daughter who we were blessed to know and who taught us to treasure and celebrate life.

There are a couple small mis-statements, completely understandable with such a complex history: Sasha did in fact crawl and then started to walk after much focused work in our home by Lisa, her first occupational therapist. Lisa had returned to Sick Kids while Sasha was living at Sick Kids after her second surgery and then she started to visit Sasha at home after our return a couple times a week after a long day of work at Sick Kids - amazing; and the internal bleeding that lead to Sasha's death was not caused by a paucity of bile ducts (the liver condition common to kids with Alagille Syndrome) but rather suspected portal hypertension and bleeding varices that developed as a result of the damaged liver.

We thank Catherine Dunphy of the Toronto Star for her keen interest in Sasha's life and the family experience of pediatric medicine and palliative and bereavement care.