'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.

Walking with Mia, Tim and Sasha's spirit

Tim Wilson met Mia and I at Cedarvale and we hit the swings and slides and then walked into Cedarvale Ravine where he filmed us for a movie on Stephen Jenkinson and palliative care. Sasha's story will be the only paediatric palliative care story in the film for the National Film Board. We walked the path that Pamela and Sasha walked almost every day, Mia loving the little foot bridges, walking across, then back and again. We met some dogs and other walkers and then chatted by the bridge that had been the turn-around point on the first Sasha Bella Walk in June. We talked about the fund-raising walk in June, differences in mine and Pamela's roles and what it meant to come home with Sasha.

You can read about Tim's projects at his website including an intriguing article on a father's tools or view shorts of 17 of his documentaries including the stunning demo short for Grief Walker on the work of Stephen Jenkinson that has been the subject of Tim's interviews with us. Stephen helped us face up to Sasha dying so that we could bring her home - -"Counselor and palliative care worker Stephen Jenkinson takes a radically different approach to the care of the terminally ill. He advises that they 'abandon false hope' and turn instead to grief. 'I teach the art,' he says, 'of being broken-hearted.' Moreover, he insists that each of us has an obligation to die well." Stephen offers the keynote tomorrow afternoon to open the 2007 Canadian Hospice Palliative Care Conference.

SickKids CCU Palliative Care workshop

On May 14, we joined Stephen Jenkinson and Dr Christine Newman for a 45 minute discussion with SickKids ICU fellows on the topic of doctors communicating with parents about death and dying. The description of the event included: talking about death to families, good and bad death experiences, spiritual and cultural influences, impact on the caregivers. I gave a short recap of Sasha's difficult CCU journey and some communication challenges we perceived with the full focus of our questions often bearing down on the nurses at the bedside. Mom shared with CCU that she wished there had been an up front discussion that Sasha was dying and that Palliative Care was brought in earlier. We both spoke of the importance of planning a good death during end of life discussions as some parent's final and appropriate focus on quality of life for a terminally ill child.

The session was filmed by Tim Wilson for a documentary on paediatric palliative care and Stephen Jenkinson's insights into living our dying. The previous day Tim visited our house and filmed us talking about Sasha's journey through SickKids and then our return home to die.

We thank Dr Scott Simpson for inviting palliative care into SickKids CCU for focused attention and discussion and Dr Peter Cox, ICU clinical director, for supporting our visit.

Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care at Mount Sinai Hospital: Coming Home

Thanks to the committee of the Unicorn Dream Dinner for organizing this fundraiser and for asking us to share Sasha's story of coming home with the Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care at Mount Sinai. We are honoured to be here with you and to share this evening with some of our SickKids care team, cardiologistDr Jennifer Russell, Riley and Tessie two of Sasha's many cardiac nurses and Maria Rugg of SickKids Palliative Care. Max and B's ability to help SickKids Hospital's patients is an important new palliative care collaboration.

Our happiest days were the births of our two daughters. Mia was born June of last year. Sasha, our first, was born 2 years earlier and she passed away the day before Mia’s birth.

Shortly after Sasha’s birth, we discovered she had a serious congenital heart defect and Alagille Syndrome, a rare liver disease. Cardiologist Dr. Jennifer Russell organized the Heart Centre surgical plan consisting of multiple interventions with the understanding that our top priority was Sasha’s quality of life. At age 18 months Sasha was thriving and all was going as planned, however she then suffered severe complications after her 2^nd surgery in December 2005.

To date, this period after Sasha’s surgery was the most difficult time of our lives as we saw Sasha go through intervention after intervention and our criteria for quality of life kept dropping.

We basically moved into the hospital but as the weeks turned to months we knew we couldn’t take up permanent residency at Sick Kids and what kind of a life was this for Sasha. She was now dependent on nutrition through an IV and almost daily blood transfusions. We couldn’t help Sasha get better and we felt responsible for putting her through this. We knew that she was dying but hoped that she would get better.

At this point, after 5 months in the hospital, we were exhausted and we needed an intervention.

A friend gave Pam Larry Liebrach’s and Stephen Jenkinson's phone numbers and after speaking with Stephen over the phone, we walked across the street to the Temmy Latner Center and spoke to Steve for a long time. He challenged us and asked the questions we didn’t want to ask. We spoke about Sasha’s death and we knew she wanted to take Sasha home the second we left Steve’s office.

We wanted her to see her house, her dog, her toys – we were ready to organize everything necessary so that she had a peaceful death at home. We finally felt, as we considered the ending of her life, that the quality of her life was again the priority.

The Dr Jay Foundation, one of Temmy Latner’s sponsors, has a motto that really sums up perfectly what we wanted to do: to add life to a child’s time, not just time to a child’s life. We thought that Sasha would only live a few days.

Every step of the way home was special, seeing her smile when she saw the car for the first time in 5 months, watching her in the car seat, looking out the window, humming to herself, seeing her eyes widen as we walked up the stairs to her dog and cat and toys and then walk through all the rooms in the house. It really was quite a moment.

That first day Toronto CCAC came over to orient us. Sasha had many IVs to configure. The nurses were cheery and also very respectful of our wishes and they worked with us over time to lessen their visits and let Pamela take over the nursing duties.

Going to sleep with Sasha in our own bed that first night was an incredible milestone for us. We played and sang songs together. We awoke with the sun and birds chirping and then Pamela coming in to reset the IV.

Sasha was happier and more comfortable and her bleeding just stopped. Steve and Russell came over to speak with the family and we told them that Sasha was no longer bleeding, what do we do. Well we go on living. When Sasha’s paediatrician Dr Peer came to check on her we had completed a full circle, Sasha was back with her community doctor.

We had worried that Sasha was becoming institutionalized and would forget our life before the operation. That feeling started to melt away. There were no more rounds, no vitals, no intercoms. We walked the neighbourhood, went out in the car, family came over every day and Sasha celebrated her second birthday at home. It was very bitter sweet. She was tired and we knew we had very little time left together.

I could speak all night about how special it was that we could choose to come home with Temmy Latner but will end with a few thoughts.

After experiencing very high standards of care at the Heart Centre, The Temmy Latner Centre picked up the support role without dropping a beat. Dr Russell Goldman and the TCAC nurses were incredibly positive and gave us as much space as we needed while always being available when we had little panic attacks.

The hospital gave us a life with Sasha, The Temmy Latner Centre helped us give her a good death at home. The words “good death” must seem strange. But if we all strove to give her a good life, why would we want anything different for her death? In Nov, the Temmy Latner centre organized a Ceremony of Remembering for a number of bereaved families and it was without any exaggeration the most powerful and beautiful memorial we have ever participated in as we built a small house in which to put memories of our deceased.

The medical system struggles to find the right moment or person to bring in palliative care however parents don’t know they need guidance on facing death. We are a good example, we pushed palliative care away. I say this because the person who intervened for us wasn’t a doctor or a nurse. He had never seen Sasha before. He had never met us before. He simply asked us what we wanted and when we drifted into dreams of cures he quietly challenged us: was that going to happen? No. Steve Jenkinson had no relationship with us but he gave us that space to face Sasha’s death.

The Temmy Latner Children's program is working with the Hospital for Sick Children to give families the option of allowing their child to die at home. Sasha was one of the first such children.

This picture behind us was taken by heather rivlin on the first morning home as part of her voluntary work for Now I Lay Me Down to Sleep. We thank the Temmy Latner Centre for making this picture possible and we thank all of you tonight for your generous donations to continue Samantha’s unicorn dream.

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."

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.



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.



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.

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

A whole new way

With the day, she slept soundly, I padded around the house, sat on the porch with a light rain and just breathed and relaxed.

Jeff came by at my Dad's request to clean up the front, edge the bed, mow the lawn, and we chatted over a coffee.

I called Stephen Jenkinson and we arranged a 4pm family meeting with Dr. Russell Goldman, the primary doctor on our home care team. I wanted the family to meet Stephen as he had helped us face our decision squarely.

We'd contacted Heather Rivlin who offers her services to Now I Lay Me Down To Sleep, a group of professional photographers creating tender sessions for paliative care children and families. The session was wonderful, slow, fun - here is a short video clip of Heather snapping pictures with us on the bed, I will post some pictures from the session soon.

Kim came over with Andy Shay cheese and we had a little feast.

Lorna, Marcia and Henry, Lynn and Raina were over when Stephen and Russell arrived. They met Sasha in the kitchen as we run through our concerns and then we all talked. What would help (just loving Sasha), what we wished to avoid (an endless vigil, innumerable phone calls to check the status).

Pam and Reina went to get nails down and Mark visited with Ethan, Theo and 8 containers of delicious pasta. Sean, Marcia and henry visited and I went with Sean for Sasha's first walk around the neighbourhood. She was wide eyed.

When we put her to bed, she went to sleep immediately!

I went out to meet Dom for a few beers on College Street to talk Sasha, life and tech.