Palliative care should be a phased conversation about a supportive and holistic treatment with benefits

Maria Rugg welcomed a small group of health care staff and parents to the Toronto Central Palliative Care Network events to celebrate National Hospice and Palliative Care Week. The expert panel was asked to reflect when in the trajectory of a disease should 1) the child and 2) the parents and family be made aware that the child may die and palliative care be introduced. While palliative care guidelines suggest palliative care be introduced when the family is ready or depending on the type of disease, Maria highlighted a 2000 JAMA study, Understanding of Prognosis Among Parents of Children Who Died of Cancer: Impact on Treatment Goals and Integration of Palliative Care, which found on average that doctors knew twice as many days prior to parents as to the likelihood of death. The study concludes: "Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care."

Maria then introduced the SickKids panel of experts. The notes below were hand written and attempt to capture some of the highlights. Some comments relate to two case studies, a 3 year old boy with cancer and what a young child can understand about a life threatening disease and an 11 year old girl with CF facing the choice of a lung transplant whose parents do not want her to have a choice to decline the treatment. The notes below mostly relate to the more general question of when and how to talk about palliative care.

Christine Harrison, Director of SickKids Bioethics Department, emphasized that when we are talking about truth telling we need to emphasize the importance and fragility of the trust between family and health professional and also the complexity of communication, including kind ways of delivering the diagnosis. The point is to allow for thoughtful decisions and for patients and parents to have control over the procedures. Some words are conversation stoppers, like cancer, death and palliative care. Think of a disclosure of a diagnosis as a staged process, not one event. Palliative care is a potential benefit, though not necessarily at the beginning. We understand that the family understanding of palliative care if often the same as end of life care and we can work to move this understanding. Be careful in that the decision is rightly theirs. Patients who feel they have had information withheld from them may have difficulty trusting.   

Oncologist Dr Eric Bouffet: I think the earlier you share the information the better. It can be overwhelming all coming at one time. When you say there is a 5% rate of success the parents often only remember the 5%. With neuroblastoma I explain there may be a 10-15% rate of success however you will hijack most of the child's remaining life with the treatment. In some cases it is important to clarify the options very early and there are times when I have to bypass a parent's desire to hide the reality [from their child]. He said he would not tell the 3 year old child that he might die but would be very pushy to have the 11 year old girl, already included in prior treatment decisions, have a say in the acceptance of a transplant option.

Pediatric palliative care physician Dr Christine Harrison: If this was truly a challenge panel then I would say one must always tell parents when this is an illness that they are likely to die from. It is our obligation that children and parents know as much as they can understand. When you say 'they may die' then the conversation should happen early but not necessarily at the first visit. At a first visit, there is only so much families take in. One of the reasons palliative care is difficult to hear is because health care professionals find it difficult to say. Parents listen carefully to what we say and to what we dont say. If we say palliative care is an option when nothing else is working then we put a very negative value on palliative care. There is a world of difference between 'may die' and 'will die'. Also, we dont 'deliver' news, we deliver newspapers. We share bad news. Think about the words used, what you need to find out. I prepare to ensure they understand and have imparted to me what they need. It should be planned for as soon as it enters the mind of the health care professional. One child heard that we cannot make the cancer better and the child thought she could live with cancer and go to high school and university, marry and have children. She didnt want to give up but she also didnt understand. We should avoid doctors saying 'We could do everything' - families don't know the 'everything' we can do. Rather than the word "owie" to describe cancer, this is an opportunity to teach what cancer is to the youngest patients and his circle of firends. We can ask what does Jeremy know about where a dead cat is or his grandma. Children of 3 can understand a lot. It is key that children know they are not alone and that parents and doctors will do their best to help. Parents wish to protect children from horrible things. If we cannot protect the children from death then we must prepare them.

Parent, bereaved parent and frequent palliative care speaker Valerie Macdonald began with her own experience: When do we tell parents there child may die? Possibly not at the beginning when we hear there is an 80% chance of a cure.  There isn't a right time. Disclosure meetings were very busy and it was hard for me to absorb information. It is important to check what parents understand. To me, the words 'Phase One Trial' means to the doctors that the child is likely to die. What is often glossed over is what palliative care is. Palliative care is a viable treatment option. Palliative care is supportive therapy. Palliative care is a holistic approach to improving quality of life relieving symptoms and helping the child and the family with the process of dying. I believe there are some treatments that are worse than dying. Palliative care is a supportive treatment that lets the child develop to the best of their abilities in the time they have remaining. 

As participants reflected about the cases and choice of timing and inclusion of young children some very clear points about the importance of the palliative care discussion, barriers caused by staff themselves, and the need for parents to be told over time about the benefits that palliative care offer.

For me a distinction between 'delivery' versus 'sharing' over time a life-threatening diagnosis was important. Beyond the issue of staff who do not speak about palliative care at all with their patients, or who 'wait' until way too late to start to talk about it, there is the issue of a quick delivery that parents will not take in, or may instinctively recoil from, that does not allow time and trust to develop that allows families to value palliative care or palliative care workers.

I wish to thank the panelists for their thoughtful contributions and also thank Adam Starkman of SickKids Foundation for coming to learn about palliative care from a staff and parent point of view.

Adam reflected that there are many examples of family-centred care that he talks to funders about, such as the playroom off the Atrium where siblings can hang out and play and do homework, and the panel showed him that discussions between staff and families to explore palliative care, separately from end of life care, exemplifies family-centred care.

Palliative expert panel - myths surrounding paediatric palliative research

"What are the biggest myths surrounding research?" was the expert panel focus, moderated by Maria Rugg, former SickKids Advanced Practise Nurse to the Palliative and Bereavement Service, now seconded to the Office of the Chief Coroner of Ontario. The panel comprised of:

Elizabeth Peeters, b.r.a.i.n child president, member of SickKids Research Ethics Board, grieving mother and sibling

Dr Christine Newman, SickKids Palliative and Bereavement Care Service

Dr Adam Rapoport, Palliative Care Consultant, Max and Beatrice Wolfe Children's Centre

Randy Zlotnik Shaul, SickKids bioethicist


Maria: "Is it fair to ask families to participate in research?"

Zlotkin Shaul: It is "fair and reasonable to offer parents the opportunity."

Rapoport: It is "unfair not to".

Newman: Asking families "should be mandatory...I see five families here who have helped me."

Elizabeth: "To not get chance for research is taking away our choice. We don't have a lot of choices."


Maria: "What are the biggest myths surrounding research?"

Rapoport: "That there is nothing to be gained by the (palliative) individual."

Newman: "That families are too vulnerable... They are often the strongest patients."

Elizabeth: "That families have too much on their plate; let us make the decision!"


Maria: "When is the right time to speak"

Rapoport: "When we chose 3 months it was more for the REB; we want to capture info as closely as possible."

Newman: "Waiting equals protectionism, you are never over it. We want real time info. Parents can decide."

Zlotkin Shaul "Problem perhaps in that REBs not part of the wider conversation. Help educate REBs so you are on the same page; if you have better data please share with them."

Maria: "Its important to see that it's not 'them', it's all of us."


Maria: "What are the next steps?"

Elizabeth: how death effects the wider family

Newman: more work on siblings, push back during the palliative phase, include the voice of the child, starting to see inutero palliative care, look at myths to debunk, work with REBs on the time barrier to enter a study after the child's death

Rapoport: descriptive studies ok, now need more experimental designs and head to head trials otherwise we are researching hospital silos

Zlotkin Shaul: an interesting model was a summer camp with senior researchers on pregnant women who took a week to meet and brainstorm challenges with research and with REBs

Nurse comment: expand to rural areas too!

Jonathan: not being asked about Sasha's death afterward felt bizarre

Pediatric Patients Receiving Palliative Care in Canada

A multicenter review of 8 dedicated pediatric palliative care programs in Canada, published in Archives of Pediatric and Adolescent Medicine in June 2007, estimates that nationally "between 5% and 12% of the children who could benefit from palliative care received services" and concludes that "Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs." The review is based on 317 children cared for during 2002 and 2003. Over the last three years, hard work and determined communication have raised these numbers, there are now 4.5 palliative care professionals at SickKids Hospital and referrals are up. We are however still far from normalizing palliative care access to families early in the care of kids with long term or severe health challenges. Thanks to Maria Rugg at SickKids Hospital, one of the study's co-authors, for pointing us to this report.

TRAC-PG palliative and grief research

On September 24th we reported to a TRAC-PG retreat on the website's progress - I love how such detailed and lengthy interdisciplinary meetings are called "retreats". In the time since we knew Sasha was dying, the palliative service at SickKids have given generously of their time. Laura Beaune heads up palliative research efforts and has been our website contact person. With Andrea Wheat, Laura has faciliated and guided our journey in Sasha's memory to help support families and Interprofessional Practise. The first website formulation included a public and member site for TRAC-PG, blog for families and private discussion boards for patients, families and their care team. The discussion board idea is of great interest, a place where parents can record daily events whether at hospital or in the community with input from all disciplines (on a non-emergency basis). When SickKids IT staff shared their plans to offer family blogging tools (SickKids Care Pages have now been launched) and was overhauling their entire web CMS to allow parent recording we put the blog and forum on hold. After almost a year of planning, we are eager to move onto the design and then the build phases for a TRAC-PG website that describes the full range of projects with Member areas and Comment feedback and attention to resources for Patients and Families, Clinicians and Volunteers and Policymakers and Researchers.

And what is TRAC-PG you might ask? Team for Research with Adolescents and Children in Palliation and Grief (TRAC-PG) comprises interdisciplinary clinicians and clinical researchers from hospitals, academic and community settings focused on evidence based paediatric palliative care research. TRAC-PG emerged from a research interest group within SickKids Research Institute’s Child Health Evaluative Sciences (CHES) in 2003 by Dr. Beverley Antle (read more about this Canadian inspiration behind palliative and family-centred research), Dr. Maru Barrera and Laura Beaune to collaborate and develop a cohesive program of psychosocially based research to further understand the living, dying and bereavement experience of children with life threatening illnesses and their families. TRAC-PG aims to generate new knowledge and integrate evidence based, family-centred palliative care across the health care systems. TRAC-PG's research focus aims to provide real data to support the call for expanded palliative services as research is vital to impliment initiatives in a healthcare setting. It is simply not enough to have anecdotal evidence that normalizing palliative and bereavement services is good for patients and families. In supporting the growth of paediatric palliative care programs I really could not have chosen a more vital and impactful group to volunteer with; it also warms my heart that among the dozen professionals at the meeting, five cared for Sasha directly.

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.

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.