Focusing in on the communication of complex care

It is exciting to hear that nursing specialist Karen LeGrow spent several days this past week attending an Advanced Practitioners Forum - Family Centered Care at Lucille Packard's Children's Hospital. Karen LeGrow is a Clinical Nurse Specialist in the Critical Care Unit, the Project Director of the Population Health Sciences Research Institute and a Cross - Appointment to Faculty of Nursing, University of Toronto. Karen's current research has a great deal of relevance to our communication struggle in CCCU over almost 5 weeks; here is a summary of the research Problem/Issue: Advances in medical technology have substantially altered the life-death trajectory for critically ill children and their families. Many children with pre-existing chronic conditions are experiencing a longer life expectancy. As a result, increasing numbers of children dependent upon technology require frequent and prolonged periods of hospitalization for increasingly complex health problems. Parents are often forced to make difficult and complex decisions regarding their children’s care under changing conditions in a paediatric intensive care unit (PICU), at a time when high levels of stress, grief, and fatigue lead to diminished cognitive functioning and therefore threaten optimum decision-making. Communication problems and conflict between families and the health care team regarding the child’s care have been identified as social factors contributing to delays in both treatment and decision making, thereby resulting in unnecessarily prolonged intensive care unit stays for children with complex chronic conditions. More fellowship information

Workshop on SickKids family-team communication

The Sasha Bella Fund will participate in a communication workshop on March 17 for Sick Kids staff planned by Pam Hubley (Associate Chief of Nursing Practice), Lorelei Lingard (Scientist, Sick Kids Learning Institute) and Karen LeGrow (CCCU, Research Institute, Faculty of Nursing University of Toronto). The focus of the workshop is to engage in dialogue and critically reflect upon the way in which SickKids staff communicate with families and each other (team members).

NICU parent - staff brainstorm

Fifteen SickKids NICU staff met with three parents to share ideas on family centred care. Two other parents who could not make the meeting participated via written submissions. The two hour scheduled exchange went to almost three and a half hours as we recognized communication that works and delved into specific and general challenges relating to space, continuity, developmental support, role clarity, helpful technology, scripted communications, a reengaged family advisory and more. Our next steps are to draw up a list of recommendations and together discuss how to best take this forward, considering the considerable prior work by an earlier NICU family advisory council. Participants at this NICU family centred care brainstorm were, going around the table: Dr Jonathan Hellmann (NICU Clinical Director), Judy Hawes (NICU Nurse), Jonathan Blumberg (parent, Sasha Bella Fund), Lisa Bonney-Leung (parent), Kim O'Leary (Child Life), Jennifer Butterly (Marnie's Lounge), Lori Ives-Bain (NICU Palliative Care), Chris Churchhill (NICU Operations Director), Melody Hicks (NICU Clinical Manager), Pam Hubley (Chief, Nursing), Janis Purdy (parent), Dianne Flacks (parent), Jonathan Purdy-Flacks (Janis and Diane's baby), Kim Dionne (NICU Nurse Practitioner), Sharyn Gibbons (NICU Nurse Practitioner), Chris Elliot (NICU Quality Leader), Suzanne Breton (Occupational Therapy), Laura DeOliveira (Social Work, NICU), Dianne (Social Work, NICU) Sandy Steinwender (Occupational Therapy). Frank Gavin (SickKids Family Advisory Committee) joined us for the introductions and offered to share resources on NICU family advisories but was unable to stay due to another presentation committment. Gord and Stacey Archer provided written submissions that were presented by Janis.

Beanstalk program and palliative care mural

We were excited that Sasha's occupational therapists Lisa Hoffman and Lori Burton are bringing services from the fantastic Beanstalk program on 6A to 4D and Pamela and I met with them, muralist Susy Bleasby and Clinical Leader Patricia Sutton. So we talked about clouds and kites and butterflies on the ceiling for when the kids are on their backs looking up and a tree with some kids sitting on a branch. We then went up to the 6A playroom to look at their beanstalk and to finish the triple mural sandwhich we went downstairs to drop by the palliative care office in the basement, introduce Maria Rugg to Eve and Susy and look at where butterflies can signpost the path to palliative care.

Your smiles sweet peach fly between walls and noses, darkness and light

One bitterly cold morning a few weeks back, after a particularly windy night, I saw that one of the two windmills on our porch had blown away and I realized it was Sasha's toy. Mia's windmill was still there. I had reattached flukes to stem several times, so it was only a matter of time but I felt a tiny loss that was quickly replaced by another overwhelming feeling. It was just right. This little piece of plastic with its silver and red shiny surfaces caught my eye a hundred times and the wind of two summers and two winters. As we enterred the house we would see the little plastic toy and think of Sasha. And now nature had busted it free and her windmill was sailing on its journey like the brave tin soldier. And it felt right because in these weeks a series of projects with SickKids have been set in motion and conversations with other parent's about their years of work have established a parent road map of sorts. Some of our dreams from just two years ago are becoming a reality in little and big ways. SickKids is like a city, there are different neighbourhoods, thousands of staff, lots of kids and all kinds of things going on from care to education to planning, incredible trials, tribulations, hard work, cries and tears and smiles and so much life and death. I have found that there is brilliant work being done, but it is not always or even often shared, and each department and generation of parents does the work of making communication a little easier, putting in place some key supports, pushing for more patient safety, getting the team talking better, including the parents more. And it is an organic process, like gardening. Policies make a difference but people and relationships have to grown into that new culture and start the process again. Some of the plants are perennials and some are annuals. Some in the sun and some in shade, some soil is tired and depleted and in need of nutients. There is always a new crop coming through on a regular basis and the work is non-stop. Where parents work as volunteers without a lot of hospital support, there is burnout and fadeaway, and when a parent asks later, why aren't there parent meetings on every floor, there is a kind smile and someone remembers, 'Oh yes, there was a family group, I must see what happened to it'. And lets not forget the technology. This last week via Facebook I have reconnected to a couple dozen people from a summer camp 25 years ago; within days one person connects to another and then 100 pictures are uploaded by a handful with scanners and neat photo albums and then a dozen of us are commenting on the pictures like kids. Between the need for better use of resources and better team communication, the desire to partner with patients and families and offer care that keeps body and soul and the families love going strong, it feels to me like there is a new wind blowing. It has blown forever and wanes and builds and stalls and grows. It is the love of parents and their children and the cycles of acceptance and waiting are getting shorter with each generation. Knowledge will bust out of its silo carried on the lips of passionate and caring people. I have met so many hospital staff with great hearts, they have each heard and been touched by the stories from parents, the stories of all that worked well or went badly and just how much a little communication can effect you in those vulnerable moments, for good or bad. Now I have heard stories from several parents who have been working at SickKids hospital to make care more family centred and compassionate and transparent, in some cases for over a decade. So I see that we named our little fund the Sasha Bella Fund for Family Centred Care for a reason. And only these last few weeks I see the reason wasn't, as I once thought, that noone else was doing the work but that so many are doing the work and all this energy is coalescing and building momentum. Parent participation and presence and deeper patient partnership is in the air, with the winds that carried away Sasha's windmill, because we cannot stop remembering and asking and reminding and thanking and wondering; because it is and was for our kids. I am thinking now about the little boy with magic eyes whose G tube got pulled out this afternoon and was rushed with his mom to emergency and with everything on her mind, his mom's partner wants me to know that she still really wishes to present thoughts on family centred care tomorrow at the NICU.

What a parent can do when their child is dying

With all the preparation for Sasha's death, I have written about my regret that I spent time away from her room on her final day and wish to point out an article in AboutKidsHealth by Laura Beaune and Dr Chris Newman which detailsparental planning and presence during their child's death while in palliative care.

Sickkids IPP Retreat on evolution of family advisory

On Monday February 11, the Family Centred Care and Inter-professional Practise Retreat brought together about 35 SickKids hospital staff for a five hour exploration of hospital strategies on parent advisory. Parents included current Family Advisory Committee co-chairs Sidney Cameron and Jill Adolphe and two dads outside the FAC, Malcolm Berry who now works at SickKids Foundation and has setup the Paige Berry fund in his daughter's honour myself for the Sasha Bella Fund For Family Centred Care, a Sickkids Foundation tribute fund. In preparation, participants were sent the conclusions of an internal review begun in March 2007 by the Family Advisory Committee that pointed out the committee's success required expanded parent participation and resourcing. This FAC review comes after teams were struck in 2005 under Margaret Keatings and Bonnie Fleming-Carroll to systematically consider and support interprofessional practise and family-centred care by SickKids staff.

Margaret Keatings, Chief Inter-professional Practise and Chief Nursing Executive, welcomed us and introduced the day as a two-parter. First we would discuss the planned two 30 minute video documentaries that would follow 3 - 4 families and then take footage and create two movies or points of view, one on Interprofessional Practise and another on Family Centred Care. Then the main event was a series of presentations on the FAC's call for restructuring, starting with Sidney and Jill's review of the focus groups, interviews and questionnaires and then followed by a literature review and survey of eight hospitals in Canada by Bonnie Fleming-Carrol. As it turns out, discussion as to the logistics and framing of the video was an excellent warmup for discussion of hospital plans to support parent and family advisers.

Margaret recapped briefly that the SickKids Family Advisory Committee are extremely proud of their achievements at launching initiatives, offering first person stories for education and participation on hospital committees however they need to expand family advisory roles at SickKids, deepen partnership between the hospital and families to identify opportunities to advance family centred care and child and family participation and this needs an update in their terms of reference: role, mandate, reporting & accountability and support and resource structures. The FAC also wishes to clarify how the work of family members not on the FAC (like parents who setup tribute funds) relates to the FAC and their accountability to SickKids and develop a 3 year plan for programs, projects and participation and commitment to the FAC role by FAC members and hospital management.

Before inviting the filmmaker to present the video project, Margaret asked participants to introduce themselves. Introductions were peppered with preliminary thoughts on what they had heard so far about the education movies and the FAC report : How do you separate interprofessional practise from family centred care, to me they are one and the same. Consider family to family support. When you say the documentary is 'point of view', exactly whose point of you will be presented? Families are an integral part of the team so is this two movies or one? Who is the audience?

Margaret introduced video team Marc and Marcy Stone who confirmed the primary audience is Sickkids staff and he responded in general with understanding that the division of the two films was somewhat arbitrary and that there would likely need to be additional families or short scenes added to capture the diversity of Sickkids patients [filming began late February or early March]

Each table then discussed the video and reported back on thoughts and comments and questions raised by the movie and FAC evolution. How do we ensure kids and grieving families are up for a video? The audience of the movies could be parents also. IPP is not only about complex care so how do we capture the range of Sickkids kids from three families? An important patient/family decision is to choose a permanent PICC line over continually reinserting IVs. When do we bring in the family? How do parents document their child's care? How do parents submit safety reports? How do parents evaluate HSC's performance? There should be a family on every committee. Are we ready to be completely transparent and debrief all adverse events? Consider family and child centred care, address a concern that family participation takes more time when it can be shown to provide better care and decision-making. Heart Centre has family-team rounds. There can be competing values such as when a family wants complimentary therapy versus heavy duty steroids. For some aboriginal families, the family is a whole group. How do people who believe in karma grieve? The trauma service has introduced a combined social worker and chaplain on the team included from the beginning. There can be disagreement between staff as to whether parents are ready to take the child home. Perceptions of families and teams can be very different and, surprise, teams are educated differently. There is the family centred care vision and the reality and documentation must show the flaws and conflict and when things go well, or not well. "This work is messy, gritty, what we do when there is no perfection". Look at disparities. It can be difficult to piece together for a sophisticated family so how is it for others? The film should include a study guide. Family and staff relationships actually constitute care, create results and allow continuity or not. Nothing is static, the ideal for family centred care can change even within the family. Successful work work on family advisers present parent's as integral to care, offers respectful partnership and working as a team. We need to build a buddy program and family to family communication.

After lunch we returned to the main event, focused discussion as to where FAC considered itself to be and where it wanted to go. An IPP implimentation team member gave an overview of the focus groups and surveys conducted and then FAC co-chairs Jill and Cameron presented the family advisory committees challenges relating to recruitment, visibility and accessibility, roles, infrastructure needs: would ideally like parents on every committee; after 18 years there still is no formal process to attract parents; the FAC is happy with initiatives for family CPR training during NICU visits, some family coffee groups and a family DVD however 100% of respondents did not know what the Parent Advisory Committee did (specifically) or how to contact them. There is a need to get onto the TV within the hospital. There is no telephone number. It is hidden on the website and not comprehensive. Perhaps there could be a storefront presence by family advisors. There is currently no budget. What is needed is fund raising and a hospital manager to help, with volunteers. The chairs ended with two quotes from staff: "Hearing the individual stories of family members touches people in a way that nothing else does." And "We need to get this right. If families are not happy, we are not happy."

Following Jill and Sydney there was further discussion and questions: We should pay parents, take care of parking, maybe a manager could be a parent. Families can support staff, other families and policy work. Do we not need an inventory of FCC skills. Would be great to have a family advisor in the hospital every day. The need put onto FAC outstripped its ability and in a way that is good. There could be a roll of people on call. Parent involvement is becoming the norm and in this shifting culture parents are requested by other parents. Need to build capacity in line with hospital strategic directions. Build infrastructure for family centred care with the FAC as the foundation.

Bonnie Fleming-Carroll then presented hospital research undertaken recently. A literature search since 2002 was winnowed down to 24 potentially relevent studies, with a few only about FACs. Eight hospital in Canada were then sent questionnaires. Two thirds had no recruitment policy for parents participation. All hospitals offered some compensation, such as vouchers and parking and we confirmed Sickkids does provide HSC volunteers with parking.

It was asked what restrictions there are on FAC members. A liason to the FAC suggested by way of "ground rules" that they watched for parents with an axe to grind or a particular focus on their kid. Some hospitals asks advisers to step down from active work if their children are in a critical in-patient period. One of the staff liasons to the FAC thought that "parents modulated themselves" in the past and a social worker stated that he trusted the process. The discussion turned to the FAC's mandate and it was presented as overseeing Family Centred Care incorporation in all hospital delivery in an advisory partnership using advocasy and education of staff to advance partnerships between families and hospital. The facilitator noted that some staff statements implied an interest in going beyond a mandate of partnership to one of being empowered to make changes. A question was posed about who from the FAC reports to the executive and Margaret Keatings was confirmed as this person. Margaret noted the FAC currently is forced to respond to hospital requests more than suggest new initiatives and the facilitator spoke of a change in culture seen in a pent up desire to do more to help the FAC. A doctor then suggested a FAC could go to a supporting staff committee for more clout and research and a FAC co-chair noted that some FACs include 50% staff. It was asked if the FAC could use telehealth to allow some parents far away to participate over internet. There was a suggestion to create support groups, awareness of Carepages and channel parents from the ground up in the departments. There was confirmation that volunteers currently are invited for one year, the hospital can request a second year and then a volunteer has to take 3 years off. There was one criticism of this as potentially losing good people quite fast.

The overall staff response to the FAC chairs was one of 'how can we help?' and the facilitator hired for this process noted that regarding the "partnership" discussion, "We have gone fundamentally beyond where we started today. Partnership literally at the table, mentors, roles and mandates and project prioritizing."

Interprofessional Practise and Family-centred Care : the McDonald Family

Thanks to Valerie McDonald for sharing her presentation on Interprofessional Practise and family-centred care at the first SickKids Hospital IPP Week on November 12 2007. The McDonald family exemplifies a deep expertise and connection to SickKids as over eight years Valerie helped care for three of her children at SickKids and then served on the Patient Safety Committee and the Family Advisory Committee. I connected with her in December and she was generous with her time just as the presentation is generous and constructive with their family experience.