Eve Beatrice joins the family

Eve joined us 2am Saturday November 10, she came out in a hurry, so quickly Pamela didnt have time for an epidural. The upside of that is that Mom felt was on her feet the next day and her recovery seemed much faster. Eve latched immediately in the delivery room and is now working her way through night feeds with a vengeance while sleeping most of the day. She is an intense little girl who we hope grows up to look just like Mamma because Mia is the splitting image of Dad.

Mia gives her new sister hugs and kisses but we have to watch her like a hawk as she doesn't know her strength, especially when enthusiastic. Hmmm, how high can I push this swing seat?!

With the loaner of a breast friend and baby swing Eve is in stride and Mom is sleeping more now than she did when in the uncomfortable pregnant times. Mom even let Dad go to SickKids on Monday for IPP day, though that only lasted until lunchtime! So happy to have two little girls with us and our beautiful Sasha's spirit feels so very close.

Interprofessional Week at SickKids

The Sasha Bella Fund was very happy to participate as sponsor of SickKid's first IPP week. About 100 SickKids nurses, doctors and allied care providers signed up for the first full day of activities held at Hollywood Theatre. The day was begun with welcome remarks by Margaret Keatings and then I spoke about Sasha's experiences, beginning with three short videos showing some of Sasha's milestones: thriving and starting to fully walk in December 2005, playing with an IV filter four months into our stay at SickKids and then together at home while Pamela worked on her IV tubes and our sweet peach passing mom the alcohol swabs just two days before she died. My remarks focused on communication challenges and appears below.

David Nicholas provided an overview of the theory and development of the IPP framework and priorities at SickKids hospital ending with examples of new initiatives and sharing dominant themes for parents and families (communicate, collaborate, coordinate) and the child/patient (comfort, respect, communication, choice).

Ivy Oandasan then reviewed wider social frameworks including emerging legal requirements that all care providers take courses in interprofessional education to learn team collaboration skills and a pressing need for 1200 learners to be accomodated yearly by volunteer mentors and coachs and to open up training and preceptorship roles within care settings. IPP education will be woven into medical licensing with the aim that by 2009 all health care graduates across the disciplines will be competent in collaboration. This competency is seen as marking a "fundamental shift" within health care provision nationally in order improve patient outcomes and enhance family-centred care objectives while using scare resources more effectively.

The stage was then taken over by "IPP Live", a theatrical presentation focused on a family meeting when a mom wants to take her daughter home. After the family was acted out, it was repeated with the audience shouting out "stop" so as to intervene and better direct the flow of the meeting.

I had to leave early at this point as Pamela had her hand's full with Mia and our new baby Eve who joined us Saturday morning and is doing just great. During the one short break I had an opportunity to meet Frank Gavin, a dedicated member of the Family Advisory Committee at SickKids Hospital as well as both nurses who had cared for Sasha and nurses excited to talk about their new initiatives. I was thrilled to hear that the Heart Centre is restarting the parent's group meetings!

Poster displays presented on Thursday and Friday will relate new IPP initiatives including:

Physiotherapy Clubfoot Clinic

ACTS (Acute Care Transport Services Team)
The Chronic Pain Program
NF1 (Neorofibramatosis type 1) Team
Decision Tree for Feeding in Paediatric Palliative Care
Rheumatology and Neonatal follow-up clinics
Annual Congenital Hand Program Family Picnic
The Beanstalk Program (6A)
2007 World Transplant Games
The Medical Directives Committee
Newborn screening
Admission Medication Reconciliation
The Good 2 Go Transition Program
Research into cross-cultural patient care in NICU
IPP "Leadership in Action" education workshop
SCOPE (Strategic Career Opportunities for Professional Excellence)
Preceptorship Initiative, Toronto Rehabilitation Institute - IPC Working Group

SickKids Hospital was designated a Best Practise Spotlight Organization candidate by the Registered Nurses Association of Ontario in the spring of 2006.

SickKids IPP efforts are being coordinated by Bonnie Fleming-Carroll and supported by Michele Durrant and Natasha Brownrigg. The Sasha Bella Fund thanks them for their commitment to family-centred care with the inclusion of Sasha's story and for the continuing privelage of being able to give back to SickKids Hospital for the dedicated care provided to our peach.

Parent - care giver communication challenges and successes: one dad's story

Interprofessional Practise week: thoughts from one dad on IPP and family-centred care communication

Jonathan Blumberg
The Sasha Bella Fund for Family-Centred Care

(These remarks are offered a year and a half after Sasha's death in the hope that they help identify IPP and family-centred care needs and help make the care path of families and care givers just a little easier. We have spoken to numerous care providers at SickKids Hospital and deeply value their professionalism and interest. I recognize that many of these challenges are systemic and relate to policies regarding complex care treatments under uniquely challenging intensive care situations and about which there is ongoing discussion. Our intention is only to help. This sharing of our experience more fully also allows us closure on the challenging aspects of our experience so we can move on to fund-raising and helping other kids like Sasha. )

Thanks for coming to help advance IPP at SickKids and thanks to the organizers for including Sasha Bella's story so that we may share successes and challenges that families face day to day. I am not going to speak about Sasha’s condition as this is recorded on an insert in the fact pack and at her website. I would however like you to see the little girl that SickKids added life to (watched 3, 30 second video clips).

I will begin with a truism: parents expect care teams are communicating efficiently. Parents also expect that care is family-centred and that the care team discusses all options with the child or family to allow for the best course of care. This means we need to look beyond the quantity of communication and reflect on the expansiveness of the communication. In Sasha’s case a great deal of discussion focused on the surgical path and only after significant adverse outcomes did we look to involve palliative care and a going home strategy. In short, we were reluctant to consider that Sasha was dying.

With a show of hands, who in the room are nurses. Doctors? OT/PT? Child life? Executive? Palliative care? Foundation? Who here has done a palliative care referral?

Parent stress can make apparent institutional strengths and weaknesses and this creates tensions. It is vital we look to these tensions as a way to understand and improve Interprofessional Practise and Family-Centred Care.

A 2006 report in Pediatrics entitled "Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review" helped validate some of our concerns as being quite widespread in the intensive care setting.

“the most severe parental stress is role alteration…the sense of helplessness
in parents who are accustomed to control in providing safety and advocacy. Other identified stressors include alterations in the child’s appearance, machine
alarm sounds, nursing procedures, and communication difficulties with PICU staff.”

In fact my coping response was to problem solve, ask lots of questions, and advocate for continuous information flow. ICU felt separated from the wards and our familiar supports.

“Most reports of parental stress after emergent PICU admission indicate that early anxiety levels are elevated to near panic. These levels subsequently decline and
stabilize. A positive correlation between the number of invasive procedures and the level of parental anxiety was observed… Parental sensitivity to environmental stimuli in the PICU becomes less acute over time, whereas dimensions such as staff communication and behavior become stronger determinants of parental stress…. Parental needs may change as novel equipment and procedures become more familiar. At some point then, parents focus on the decision-making process including interaction with the hospital staff and learning about the child’s care."

In short, parents will in time view family-staff communication as the gold standard for care.

"Parents reported feeling more stressed by their child’s behavioral and emotional response, but nurses expressed greater concern about staff communication."

We were greatly stressed both about Sasha's appearance under deep sedation and, as I discuss further below, were struck by the difference between family and staff communication in ICU versus the wards like 4D.

One study "reported that stress was positively correlated with higher socioeconomic class. Loss of parental control in relatively advantaged parents may produce
more acute stress-level elevation, but this remains unproven. Another group reported that parents of intubated children were found to be more distressed by painful procedures, as compared with parents of nonintubated children, who were more distressed by the behavioral and emotional responses of their children."

Our experience supports the notions that relatively privelaged parents may tend to demand privelage in time devoted to questions about care and we were certainly more distressed during intubation periods.

"Family-member reactions include anguish, helplessness, and aggravation. If unresolved, such responses may adversely affect the well-being of the entire family. Most pediatric critical care professionals feel an obligation to minimize parental stress and preserve family well-being. Such well-intentioned practice patterns must be based on accurate identification of parental needs."

Our needs first focused on intervention strategies and then switched to reevaluate Sasha's quality of life with an end of life home care plan. It was very difficult for us to make this transition and this effectively only occurred after a heart to heart talk by a palliative care councellor we had not met before who worked outside SickKids.

Here is a listing of ICU and ward challenges and successes followed by some suggestions based on our experiences.

ICU Challenges

- Sasha was dehydrated after the first night in ICU and we heard her nurse was training another nurse
- We had agonizing days feeling her life slipping away, Mom thinks she is dying, doesn’t share that with Dad as he remains hopeful
- Some nurses do not respond well to the number of our questions
- While we wondered why heparin (blood thinner) was continued while Sasha was bleeding and why the surgeon waited to open her up again to try stem the bleeding, we did not ask the cardiac surgeon for answers
- After TPA was introduced to the chest drains to break down clots, Sasha later hemorrages however there is no debrief on this intervention and we spoke about it throughout our stay
- The long wait as her liver fails
- Once being told “you know we are short staffed” during Christmas
- One Dr jokes and is scolded by CCU head for not talking with nurses or making notes
- One Dr responds angrily after we escalate requests for info and says "If you are not happy you know you are welcome to go somewhere else"
- Sasha’s left arm had tremors and flapped however we were told it was very unlikely to have been a sign of stroke (scans later showed Sasha had two strokes but we do not know when they occured)
- Oral care deteriorates, marble sized spitball makes her gag, nurse takes charge
- Bleeds, scopes, cauterizations followed by an exploratory cut that develops a fistula
- No ICU orientation and several weeks until the first family meeting
- A conscious 18 month old very scared when alone in CCU
- Temperature spikes for weeks, dozens of cultures and tests inconclusive, then we see pus in her scar as notice her surgical wound has opened and is infected, once addressed the fevers disappear
- Being moved around in our last two weeks between rooms
- Realising Sasha's little arm is limp and not moving
- Nurses from 4 not fully integrated at the time in ICU computer systems

Positive ICU experiences

- Nurses, doctors, pharmacists, respiratory technicians who showed such care and interest
- Spa day with a wash and shampoo
- Parents helping each other in the CCU waiting room
- Cardiac surgeon saying: "lets stop the bleeding"
- Dr changes a blocked breathing tube successfully
- Dr clears clots from her lung branch
- Drs increasingly include us at rounds
- Dr who makes herself available to us during staff holidays
- CCU head’s quiet check ups
- A new senior Dr meets every patient and family bed by bed
- Dr Russell, Sasha's cardiologist, checks in with us every day
- The quiet and privacy of the isolation room
- A nurses tears as I tell her Sasha's arm is not moving and I think she has had a stroke
- CCU Dr who supports us transitioning up to 4D
- Seeing two children go home whose families we spent a lot of time with in CCU

On the wards

- Sasha's cardiologist supporting our return to 4D gives us privacy and a quieter environment and Sasha starts to wake up, though it takes her a week to smile
- Ostomy bag support for the fistual seems new to 4, we take responsibility for it and the Wound Specialist trains us and visits frequently
- We are pushed to 6 from 4 as Sasha now viewed as a GI problem and not a 4D cardiac problem, on 6 Sasha goes into septic shock
- Could we have gone home in February and Sasha’s second round of bleeds might have held off just long enough for her fistula to close?
- She was extremely frightened when awake for nj tube introduction in IGT, shocking the 4D nurse who accompanies her the second time
- TPN home training doesn’t account for our fatigue and one of the two TPN nurses thinks we cannot learn however we pick it up quickly at home after sleep

One Dad's Suggestions

Debriefs make all the difference. Cardiac acknowledges we waited too long in ICU before trying other management options, the cardiac plan in hindsight was too aggressive for her compromised liver and Sasha was more complex than realized. Cardiac acknowledges that the informal role played by Dr Russell to coordinate all departments should have been formalized. CCU struggles with parent communication that their child is dying and throughout the hospital there is a need for for earlier involvement of palliative care.

We sat by Sasha’s bed from about 9am to 12pm, often coming in at 7 for rounds. By the end of the experience we were changing bloody diapers for an excellent nurse responsible for two or sometimes 3 beds and within days were exhausted. The information flow first to the nurse meant that the full burden of our questions fell on nurses. There was no initial orientation and a later more detailed care plan meeting only happened weeks into the experience when things were clearly in a very bad place. During our stay we did not meet a social worker for ICU (there is a CCCU social worker now) and we would strongly support continued expansion of psycho-social supports. The complexity and number of communications were managed by a large number of individual doctors and nurses which would seem to cause more differential in response to parent than is necessary.

Our looking over the notes by the bedside were met with request to raise questions with nurses. Expect parents will want to read the charts and this shouldn't feel like a surreptitous process.

After 4 weeks, Sasha was exterbated and we completed our core nurse list only to find Sasha moved 3 times in 4 days with 16 new nurses over an 8 day period. Later told CCU doesn’t have core nursing lists as schedules are up to the nurses. We had thought they were ignoring us or were incompetent in comparison to 4.

4 weeks in we didn’t know basic info that would ground our relationship. Was the bleeding left too long? Did the TPA lead to hemorrage? Could the various scoping (respiratory tract, stomach) have been done faster?

Anger management. One Dr reacted angrily, then compensated; another displayed exemplary response when Dad lost his cool

Among the Fellows, big smiles and updates made a big difference. Absences made us feel alienated.

Introductions. Most staff introduce themselves however some didn’t. Dad had male nurses standing beside the nurse speak to him first and foremost.

Conflicts between the parents. Parent worry and fatigue exacerbate tensions that may exist. Dad deferred to Mom when it came to concerns about changing nurses or the information flow. We felt we alienated CCU staff.

Concerned our child was in a perpetual motion machine of medical intervention. We expect doctors are constantly weighing when and how to intervene and when to wait and observe and strategise but this isn't always communicated.

Sounds. I was hypersensitive to the sounds around us as Sasha started to awake. The sound of serated plastic syringe rolls tearing for example. CCU offers stereos and TVs to individual patients. How about soothing or stimulating music like that offered by room217.ca carefully selected with focus groups.

Debrief and closure and grief. After nurses and doctors spends hundreds of hours intensively caring for a child, an opportunity to fully clear the air is vital to grieving and grief work and giving back to hospital and other kids. We returned to talk with SickKids staff after Sasha's death.

Family meetings: private talks away from the bedside, maybe sit with parents in the CCU waiting room the same way that surgeons meet the parents in the surgical waiting room. (We understand this would be extremely difficult for all talks however I am thinking of critical conversations like the failure of an organ)

It would greatly help that doctors give parents 'permission' to consider that their child is dying.

Create a smiley face chart as an activity for parents: my child's likes cotton, not flannel, she prefers her right side to her left etc.

Add a parent gratitude wall in all ICU centers (actually this is more something for a parent's fund)

Care coordinators: the two week rotations are hard on parents and staff, a dedicated point of contact can create continuity

Rounds: include the parents, ask if there is anything they wish to add at the end, it meant a lot to us when this happened

Nurse changeover: is there a way to not force parents to move from the room during changeover? If this is impossible because the number of patients in one room makes this impossible, is great if the first contact with the nurse allows review of upcoming proceedures and discussion of any parent followup requests

Create parent group meetings to let parents talk together with a trained staff member. There is great camaraderie among parents and when we don’t have clear information or an outlet we try and work it out themselves or via the internet and the hospital misses a chance to engage.

We really appreciated when nurses and doctors kept a focus on Sasha amid the numbers: wakefulness should change the routine, mouth care should be vigilant, phone the parents when they request notifications, be very gentle with a sedated child. Little things are big things. Tone of voice is the key determinant to denote respect and empathy.

Prepare parents: expand the SickKids website sections for surgical candidates that tells kids and parents what to expect and have a short orientation

Expedite web resources that will allow parents to record their care experience to offer a wealth of data to researchers. Parents should not have to scratch notes on the back of an envelope about life or death decisions for their child.

A new doctor can be family centred when asking key questions however a new doctor can easily overwhelm and stress a parent by asking 21 questions rather than consulting the files or collaborating with professionals who know more about the patient.

In conclusion, here are key communication needs we saw

* earlier introduction of palliative care and more straightforward discussion of dying

* formalize the key communicator role in the team for complex or multi-organ surgical plans

* lessen differences between CCCU and wards in terms of family-centred care as in core nursing, inclusion in rounds

* provide parents with web based resources for a diary, calendar and messaging shared by the team

* fund parents meeting in a group with a staff facilitator - this can be framed as new parents orientations etc such as breast feeding workshops offered on the maternity floors of our hospitals

Family-Centred Care at SickKids and reinventing the Family Advisory Committee

Back in February, I came across this wonderful description of family centred care that is both rooted in specifics and suggestive of values to guide us in this journey.

“Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

So much is packed into these sentences to guide the devising of specific practises. The last two sentences both soars with humanity and evokes a deep intimacy: how the parental "love and it's expertise" play out in a new, scary and complicated setting where parents may be inexpert at medicine but know their children best; and that deep wish, felt by every parent who has sat at a child's hospital bedside, "to be always at home", hopefully to go home or, when that is not yet possible, to bring home ideals to the hospital: love, togetherness, safety, peace, growth.

I met Frank at IPP education day. He is thoughtful and supportive and has taken it on himself to learn as much as he can about how hospitals are implimenting advisory family advisory councils as a resource for SickKids.

Which leads to the most exciting news of all. The SickKids family advisory committee is in the process of dissolving itself. Its own work and analysis lead it to conclude that the hospital needs a more integrated involvement of parents and so the council and the hospital are in the process of completely reshaping parental involvement in the hospital.

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.

Where I was in your final hours

You whimpered when we touched you, so I drew back. It was hard to hear that whimper as anything but discomfort, hard to imagine it was a choked purr. You were not calling us and we were so tired and we took a little respite. You were deeply sedated. And I was building your website. Because I loved you and wanted others to see you. Because I didn't know what else to do. Because I didn't want to look at your beautiful face swollen and yellow, your belly so distended, your failing organs congealing so that blood no longer flowed as it had the last week. Your granny and grampy and bubby spent time with you. We dropped in. So much preparation went into bringing you home but a year and a half later I still think about those last hours and ask what else could I have done beside upload pictures and write your story. That was OK, but not for most of your last day. You died as we sang you a song, as if you had waited and I am grateful I held you when you let out your final breath.

How does the palliative care community approach family preparations for their children and siblings final hours? At the beginning we were taken through all the signposts marking the end of life. Afterward we dressed her and I carried Sasha to the mortuary vehicle. Everything was, it seemed, as respectful and dignified and family-centred as could be under the circumstances. And when I look at a support network sheet on the final end of life information or a sensitive and detailed parent account of living with very sick children there is no mention of what parents do during the death of their child. When the breathing becomes very laboured and a nurse or doctor comes to increase the sedatives, that is a good time, if not before, to touch the parents with the moment if they are lost in grief. So they are there. Not on the computer.