Sickids Patient Survey Now Online

Sickkids.ca recently added an online Quality and Risk Management survey to their homepage titled "How Are We Doing?". The survey begins with a personal letter from Sickkids President Mary Jo Haddad explaining the importance of your information, that it will be carefully reviewed to improve care, held in confidence and to answer any questions please contact the Patient Representative.

You rate 11 aspects of care such as Admission, Nursing Care, Medical Care, Family Centred Care, Information etc as either Excellent, Very Good, Good, Fair, Poor or No Contact. You provide discharge date, child age, clinics or units visited, offer open comment on What Impressed You, What Disappointed You, How Can We Improve patient safety, Other Suggestions and finally optionally provide name and contact information (phone number is asked but not email address).

My immediate thought was yeah, I hope this remains a permanent website fixture. Probably to keep the number of questions down, elements are lumped together so with Medical Care for example you are asked to consider "Caring and concern shown by doctors, attention to your child’s (or your) condition, how easy it was to see doctors, teamwork among doctors" when individual doctors can vary on any one element. The four commment fields have the potential to generate rich data. I see it is not secured by SSL certificate but since you can send personal information it probably should be.

Good to see Sickkids!

Dr Chris Feudtner at Sickkids on "Partnering Leadership in the Care of Children with Complex Chronic Conditions"

Dr Chris Feudtner works with the Paediatric Advanced Care Team (PACT) at The Children's Hospital of Philadelphia, tagline "Hope lives here." He began, in reference to Ian Brown's presentation on Walker and their family experience, "I profoundly affirm what we just heard...If you let the universe change you, you can go places you would never expect."

Here is my highlight reel of a wide ranging look at professional-patient-family communication, followed by further examples.

"I believe in family centred care but we need to have the family and the staff pull together in a kind of partnership. ...What is desperately needed among this community is a sense of where we are going to go... When the train goes off the rails it is because of decision making problems at the top. We need strategy more than tactics. There always will be uncertainty. It's essential to think about what we are aiming for with risks. ... Once mindful, it is easy to see we are working on our own problems, we never go upstream to ask if we are on the same page. ... Parents are paying attention to how well we do this. ... What about emotional management strategies. We are constantly managing it and often mangling it. ... Stories are how we make meaning. I see palliative are nodding. Shared meanings and shared purposefullness. ... We need shared decision making and partnering leadership.... We need to shift from delivering difficult news to having a learning conversation....The most common proceedure we do at the hospital is talk to families."

Reflecting on the title of his talk calling for "partnering leadership", Feudtner joked that he could imagine eyes rolling when he mentioned 'leadership' as in "Oh my god, not leadership." He confirmed his belief in trials, statistics and evidence based research, particularly from the realm of palliative care, but emphasized the need for professionals and staff to get on the same page. This could start with a simple question like "Do we try plans that are off the care plan?" or "Ask, what are you hoping for with this admission?".

From his work in palliative care, "We talk in the language of hope" and it is important to ask about hopes; the answer may be as simple as 'I hope for a little more rest'. Studies show that patients want ready access to medical professionals and emotional expression: "It's about relationship and information exchange, not a miracle."

"One of the best ways to live a long time is to get a palliative care consult. And I am not entirely joking; it can help with iatrogenic issues [adverse treatment effects]..."

"Doctors and parents hopes are not on the same page" nor are their views on quality of life. "We find out that doctors and parents don't hope for the same things. This is very remediable." "Doctors are paid to be competent but parents are emotional" so professionals can constantly reconsider how they relate to a patient and ask how they can do it better. "Parents are uncertain and may feel unsupported but they feel their values are clear and if they make a choice they feel empowered.... Parents rank concerns as beyond organs..." Its important to deal with the great uncertainty. "We often don't know baseline status, so I ask parents to bring in pictures so they can see the child when they are not comatose. We don't know the baseline of recovery or how long before the next episode." In such circumstances, he thinks asking parents to graph where they see quality of life makes no sense. "These kids are like playing in traffic... It really helps if we doctors can say 'I wish I knew but I don't'". He imagined the audience thinking "You just lost a lot of street cred" and suggested "I gave up being a hero. Be close to the bone. Parents don't look less at you."

Feudtner called for professionals to couch diagnosis with concerns rather than probabilities and to question proceedures. "What is the purpose of the MRI? Coordination is also about saying no sometimes. We don't need to... What is important is not only what you hear at rounds but what you hear from families." Describing the problem solving as "not linear" and "like solving mazes from within" where the best strategy is sometimes thought to be 'always go in the same direction' until you get stuck in a blind loop, Feudtner highlighted: "We need shared decision making and partnering leadership." While a fan of Evidence Based Medicine, EBM is not his only guide: staff need to clarify, interpret (and anticipate), prioritize and bolster patients, starting with an invitation: "Ask, how can I be helpful?" To Feudtner this question is "more than a courtesy, it's a commitment".

Feudtner's three commitments to patients are: "I will be straightforward. If I am worried I will let you know. And I will not make a promise I cannot keep." He emphasized that patient and family emotions change. "Our families are terribly charged with negative affect. They have good reason to be sad. But they also have a great deal of positive affect. They are jazzed about their child. They have strong positive and negative affect. They don't want a polyana-ish reponse, just respect... Why trust parents to make decisions for kids. Because they have these strong ties and polyvalent feelings."

Feudtner noted that in partnering leadership, a key element "is neither abdicating nor appropriating" hope. When discussing hopes, you can simply ask "What are you looking for?" and be more comfortable with a discussion along the lines of, "'I wish it was possible that the cancer goes away'. 'What else are you wishing for?' 'I want to go home to spend time with family.' 'I can help with that'." There is no need to extinguish hope or be negative about alternative therapies and keep in mind there "are a variety of hopes."

Parent involvement in Sickkids NICU remodelling

Today's Toronto Star included the article "Premature Babies Thrive in Cozier ICU" (thanks Janis for passing along) showing parent involvement by Gord and Stacey Archer in Sickkids NICU remodelling plan that will have "bright, noisy rooms replaced by womb-like conditions". The work includes use of sound-absorbent tiles, cushion flooring, task lighting to reduce bright overhead lights, sound monitors at each bed to alert staff if noise levels rise above 30 decibels (they can go as high as 120 db), white boards for pictures, comfortable rocking chairs, painting the room like a nursery; also, staff will be taught "how to spot signs of stress and how to handle the babies with slow and careful motions."

'Stacey and Gord Archer noticed a difference when their son Samuel was placed in a quiet, isolated room after undergoing heart surgery shortly after he was born, seven weeks early, in December 2006. They watched anxiously as their tiny baby grew slowly but steadily over the first several weeks. "Every calorie counted for the little guy," Gord says. "He needed to gain weight, which was only a half-a-pound every 10 days." With his recovery progressing well after a couple of months, Samuel was moved to one of the hospital's nine regular neonatal intensive care rooms, which can house four to six babies each. Located closer to the nursing station and with large windows, his new room was much brighter and noisier. Within days, his parents could see his health begin to deteriorate. "There were a lot of stressors in this room, which prevented Samuel from gaining weight," Stacey recalls. "As a parent, it's so stressful, because you know that every sound is affecting the baby, but there isn't anything you can do." When Samuel stopped gaining weight and developed high blood pressure, his parents asked that he be moved back into the quieter, isolated room. Within days, he began to improve. "He was sleeping better, digesting food better – it was a remarkable difference," Gord says. "It's so much common sense. All the rooms should be like this. They were good not only for Samuel, but for us, too. When the parents are less stressed out, they can connect with the baby better." Based on their experience, the Archers have been giving SickKids advice on how to create neonatal rooms that will help calm both the fragile patients and their frazzled parents.'

Having heard parts of Gord and Stacey and Sam's story from their thoughts and suggestions to the NICU family brainstorm last month, I am happy to see the NICU including them in environmental solutions. It makes sense that reduction of noise and noxious stimulation is very important for preterm children but would it not also help any kids in any ICU environment? While in CCCU I was very sensitive to Sasha's sleep, focusing on environmental noise, however a quick dive into the literature shows it is accepted that critically ill patients have very disrupted sleep patterns, missing certain types of sleep (including REM sleep) as opposed to sleeping little. Non-intuitively, a 2003 study thought environmental noise may account for less than 30% of poor sleep and a 2001 study thought that number might be as low as 10% of arousals from sleep with more disruption and waking up caused by mechanical ventilation, conversations and hands on check of vitals. Generally I found staff made an effort to keep things quiet, as did parents. Once I was irked by a loud TV movie when Sasha was restless but couldn't say anything when I looked over at the dad so happy to have his daughter awake and animated. Once in a CCCU room with only two other children on a quiet weekend morning I was enjoying the soft light and two nurses shared a joke and started laughing - I cannot say they were particularly loud, it simply bothered me and I asked them to please be quiet. Better sleep felt like a sign of recovery. Without doubt, poor sleep effects patients and is a recurring concern and focus for parents. One study suggested giving patients ear plugs.

Frank Gavin on hospital family advisory structures

Frank Gavin, long time member of the SickKids Family Advisory Committee shares his comparative notes on five hospitals with parent advisor infrastructure. Frank offered the NICU Brainstorm to share resources on NICU family advisories or parent involvement and has been a mentor to the parents involved. His practical and theoretical knowledge of family/parent participation is a tremendous asset as SickKids expands parent participation.

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."