| Date Posted: | 2012-11-06 |
| Employment Type: | Temporary Fixed-term (0.8 – 1.0 FTE) |
| Hours per Week: | 30 hours per week (0.8 FTE) |
| Department: | NICU |
| Available: | Immediately |
| Description of Position: | The
Parent Liaison will be an active member of the neonatal
inter-professional health care team. In order to fulfill this role the
Parent Liaison must be a parent of a graduate from the NICU at SickKids
and will utilize wisdom of personal experience coupled with the unique
perspective of being a family member in a health care team. The Parent Liaison will enhance overall family engagement in their infants clinical course of treatment in the NICU. The Parent Liaison will establish improved communication processes with families to support their integration as a member of the Health Care Team. This will be achieved through the initiation, implementation and evaluation of parent activities in the NICU e.g. parent social time. Health education on how they can care for their infant in the NICU, provide guidance and support on understanding NICU practices e.g. hand hygiene. The NICU Parent Liaison will ensure the sustainability of parent programs and support future initiatives to support growth and coordinated care of the family care experience in the NICU environment. The Parent Liaison will demonstrate a commitment to championing family care in parallel with organizational strategies and vision. |
| Qualifications: | •
Post secondary degree/diploma in a related discipline (eg. Nursing,
sociology, psychology, equity studies, etc.) or an equivalent of
education and experience • Graduate parent of NICU ( must be one year post discharge) • Experience in project management would be considered an asset |
| Salary: | Commensurate with Experience |
| Available to: | Internal & External Candidates |
| Deadline: | 2012-11-15 |
| How to Apply: |
External candidates applying to posted vacancies must submit a resume via e-mail to ex.careers@sickkids.ca quoting file number CPS12396-KS
in the subject line of your e-mail. It is suggested to copy and paste
the file number from this page to ensure it is captured correctly. Only
applications submitted through ex.careers@sickkids.ca will be considered. External candidates must also submit a completed application for employment.
Internal SickKids staff should review the ‘View Job Openings’ site on
KidWeb or contact Human Resources with the file number for assistance.
Please note that resumes must be sent in PDF or Word format only.
General inquiries sent to this e-mail address will not be answered.
SickKids is strongly committed to diversity within its community and welcomes application from visible minority group members, women, Aboriginal persons, members of sexual minority groups, persons with disabilities and others who may contribute diversity within our organization. SickKids is also committed to providing accommodations to persons with disabilities in our recruitment process. Accommodations are available upon request to all applicants, including applicants who are selected to participate in an interview, assessment or selection process. If you require any accommodations to fully and fairly participate in the recruitment process, we will endeavor to provide a suitable accommodation in a manner that takes into account the applicant's accessibility needs. We thank you in advance for your interest. Only those applicants selected for an interview will be contacted. In accordance with our Hospital policy, employment at SickKids would be conditional upon you providing the Hospital with satisfactory documentation of tuberculosis testing and your immunization status. |
Showing posts with label Family Centred Care. Show all posts
Showing posts with label Family Centred Care. Show all posts
NICU parent liason position
A Parent Liaison role has just been advertised for SickKids NICU ! (PDF) This is a first paid parent role in the NICU to the best of my knowledge and an amazing opportunity to make an incredible difference in the lives of families and children when they are most vulnerable. Please circulate widely.
Big thanks to former NICU mom Janis Purdy and SickKids staff for making this happen, especially Nurse Practitioner Kim Dionne and Manager of Clinical Programs Audra Jesso.
Canadian Family Advisory Network is at CAPHC October 2011
If you volunteer or work at a pediatric care facility and are passionate about family and staff partnership in children's health then you want to attend the CFAN workshop on October 17, 2011 in Ottawa. Here are the main bits of the co-chair's most recent update on the workshop and CAPHC conference - note the last item about new, monthly professional development tele-sessions for family-centered care workers.
For information or to register please email CFAN co-chairs Lisa.Hawthornthwiate AT lhsc.on.ca or Sherri.wuetherick AT albertahealthservices.ca
CFAN at the Canadian Association of Paediatric Health Centres Conference (CAPHC) in Ottawa - Saturday October 15th and Sunday October 16th, 2011
We are very excited to announce that Dr. Karen Wayman, Endowed Director of Family Centered Care at Lucile Packard Children's Hospital at Stanford will be our keynote speaker and afternoon workshop facilitator. Karen's attendance has been made possible through the generous support of CAPHC and Children's Health Foundation.
The CFAN Workshop Planning Committee is collaborating with Christine Kouri, Patient/Family Representative and Coordinator for Patient/Family Centred Care and the Family Forum at CHEO, to plan this one and a half day event. CFAN members who have suggestions or ideas about topics you would like us to consider please send an email by the end of April. We will use past evaluation along with our discussions with Karen to inform our agenda.
Important Registration Information: Family Advisors who do not have a budget to attend the CFAN workshop will be granted a complimentary registration. Members will need to obtain a code that will be given to them by contacting the CFAN Chairs. CAPHC is also offering a reduced Family Rate for the entire conference. Please continue to check the CAPHC website for up to date conference registration processes. Contact Lisa.Hawthornthwiate AT lhsc.on.ca or Sherri.wuetherick AT albertahealthservices.ca for the complimentary registration code.
CAPHC Conference: October 17th - 19th, 2011
Plans for October's CAPHC Conference in Ottawa are falling quickly into place. After last year's focus on "What's working now?" this year's theme is "Exploring the future of children's health care: What can we expect? How do we prepare?"
Among the highlights: Dr. Michael Evans, a wonderfully good-humored and forward-thinking family doctor, teacher and researcher, will give the keynote and Dr. Brian Goldman of "White Coat, Black Art" fame will lead a participatory session exploring how best to respond to and shape the changes ahead. The next day (Tuesday) will feature a performance of "Ed's Story" from Halifax and concurrent sessions on the future of primary care and impact of social media on everyone involved in child and youth health, a session CFAN will take a particularly active role in helping to plan.
There will be lots of time and space for posters--please think about submitting one yourself--and opportunities throughout for useful and enjoyable networking.
Visit CAPHC for conference information and updates from CFAN.
Patient and Family Centred Care Leaders Collaborative
With support from CFAN and CAPHC a new group has been formed for Leaders who are tasked with leading FCC change at their organizations. Monthly professional development topics with a supportive peer to peer atmosphere is offered for Leaders working in these unique roles. Please contact CFAN Director, robin.england AT iwk.nshealth.ca for more information about these telesession opportunities.
For information or to register please email CFAN co-chairs Lisa.Hawthornthwiate AT lhsc.on.ca or Sherri.wuetherick AT albertahealthservices.ca
David Nicholas: Needs of Professionals Within An Interprofessional Environment: Emergent Findings from Sickkids Based Research
David Nicholas began with a definition of Interprofessional Practise from the Sickkids publication Advancing Interprofessional Practise (2004):
He then summarized the findings of SCRIPT which can be found in the SCRIPT Annual Report Year 2 (April 2006 - March 2007).
David's main focus was sharing data on the 13 focus groups held by Sickkids to date that combine professionals, trainees and parents. The 84 participants so far average about 6.5 persons per focus group. The groups were asked about both formal communication (referrals, health care records, rounds) and informal communication (face to face discussions, telephone calls, pages and emails). While communication sometimes went well, he stated that he was pulling from the data specifically the challenges):
* communication with off-service staff was difficult and disjointed and confusion arose about who to contact leading to phone tag and communication delays
* the complexity of patient care intersects with staff turn-over, time limitations, high workload and lack of awareness or knowledge about every profession's role
Parents are concerned about: fragmentation between services, specialists who do not coordinate among themselves, how complicated it can be as a parent to navigate, and that the right hand must know what the left hand is doing.
"Parents overwhelmingly felt that the more areas that their child was seen in, the less coordinated the care and communication."
The findings speak to the need for:
* greater consideration of the breadth of health needs
* coordination of multiple services
* awareness of who else is involved
* flexibility of communication along with structures that support integrative case planning
* ways to reach off-service resources
Staff spoke to misunderstandings as to scope of practise boundaries and interprofessional boundaries (roles and responsibilities) that leads to 'slippage' with patients and families. Many felt that not recognizing boundaries was a source of stress and frustration while some felt that IPP overlap at times offered a protective factor.
The development of personal and collegial relationships which can foster respect can be supported by social and teambuilding events. Shared time is essential to get know one another and develop some bonds. Respect grows with time and experience.
David highlighted that IPP is not "rationing specialised care into a watered down mutuality" and is about "optimizing coordination, interactions, humaness and effectiveness of care." He sees the data suggesting the need for staff to experience: more IP education; more IP structures for communication (shared rounds, overlap between staff shift changes, proactive care to reduce reactive responses); more coordination between departments and the importance of social and team building events.
He introduced the family presence in IPP by reading a long quote by an adult transitioned patient who was being considered for surgery and happened to stop in at one doctors office when another doctor was there and shared how "It really helped when they were actually talking with each other in my presence." In short staff can help patients understand some of "our processes".
The key role of families in providing insight into a care plan requires effective coordination of multiple services and professionals, consistency of messaging to children and families, flexibility in communication with structures that support integrative case planning, more inclusion of families in core planning and support of parents in terms of finding their role as part of the IPP team. Inviting families to comment on care requires that staff assist families with specialised care language. He concluded by noting and supporting Dr Joshua Tepper's opening call to include the child and family integrally with the team.
Related:
"Structuring communication relationships for interprofessional teamwork (SCRIPT): a cluster randomized controlled trial" (Zwarenstein et al 2007)
RNAO Best Practice Spotlight, Supporting and Strengthening Families through Expected and Unexpected Life Events, gap analysis - summary: Partnerships with families are important but inconsistent across the hospital; An assessment of the family should be done in conjunction with the assessment of the child; While Family Centered Care(FCC) is initially discussed during staff orientation, there is a lack of ongoing educational opportunities to support family centered practice; For staff to practice FCC, they need to have the resources and support when dealing with challenging situations (e.g. adequate staffing, knowledge of conflict resolution)
"Inter-professional practice (IPP) in a paediatric health-care setting refers to the continuous interaction of two or more professions, organized into a common effort to solve or explore common issues with the best possible participation of the child and family." (emphasis in original)He listed some noteworthy interprofessional formations including the Multi-Disciplinary Urogential Team (MUG team) that combines multiple clinics in one spot so families can see many specialists during one visit to Sickkids and the Health Leadership Forum held in August where dozens of Sickkids staff lived and worked for a week and explored professional initiatives together, in several cases deciding to continue working together on team and family related inititatives.
He then summarized the findings of SCRIPT which can be found in the SCRIPT Annual Report Year 2 (April 2006 - March 2007).
David's main focus was sharing data on the 13 focus groups held by Sickkids to date that combine professionals, trainees and parents. The 84 participants so far average about 6.5 persons per focus group. The groups were asked about both formal communication (referrals, health care records, rounds) and informal communication (face to face discussions, telephone calls, pages and emails). While communication sometimes went well, he stated that he was pulling from the data specifically the challenges):
* communication with off-service staff was difficult and disjointed and confusion arose about who to contact leading to phone tag and communication delays
* the complexity of patient care intersects with staff turn-over, time limitations, high workload and lack of awareness or knowledge about every profession's role
Parents are concerned about: fragmentation between services, specialists who do not coordinate among themselves, how complicated it can be as a parent to navigate, and that the right hand must know what the left hand is doing.
"Parents overwhelmingly felt that the more areas that their child was seen in, the less coordinated the care and communication."
The findings speak to the need for:
* greater consideration of the breadth of health needs
* coordination of multiple services
* awareness of who else is involved
* flexibility of communication along with structures that support integrative case planning
* ways to reach off-service resources
Staff spoke to misunderstandings as to scope of practise boundaries and interprofessional boundaries (roles and responsibilities) that leads to 'slippage' with patients and families. Many felt that not recognizing boundaries was a source of stress and frustration while some felt that IPP overlap at times offered a protective factor.
The development of personal and collegial relationships which can foster respect can be supported by social and teambuilding events. Shared time is essential to get know one another and develop some bonds. Respect grows with time and experience.
David highlighted that IPP is not "rationing specialised care into a watered down mutuality" and is about "optimizing coordination, interactions, humaness and effectiveness of care." He sees the data suggesting the need for staff to experience: more IP education; more IP structures for communication (shared rounds, overlap between staff shift changes, proactive care to reduce reactive responses); more coordination between departments and the importance of social and team building events.
He introduced the family presence in IPP by reading a long quote by an adult transitioned patient who was being considered for surgery and happened to stop in at one doctors office when another doctor was there and shared how "It really helped when they were actually talking with each other in my presence." In short staff can help patients understand some of "our processes".
The key role of families in providing insight into a care plan requires effective coordination of multiple services and professionals, consistency of messaging to children and families, flexibility in communication with structures that support integrative case planning, more inclusion of families in core planning and support of parents in terms of finding their role as part of the IPP team. Inviting families to comment on care requires that staff assist families with specialised care language. He concluded by noting and supporting Dr Joshua Tepper's opening call to include the child and family integrally with the team.
Related:
"Structuring communication relationships for interprofessional teamwork (SCRIPT): a cluster randomized controlled trial" (Zwarenstein et al 2007)
RNAO Best Practice Spotlight, Supporting and Strengthening Families through Expected and Unexpected Life Events, gap analysis - summary: Partnerships with families are important but inconsistent across the hospital; An assessment of the family should be done in conjunction with the assessment of the child; While Family Centered Care(FCC) is initially discussed during staff orientation, there is a lack of ongoing educational opportunities to support family centered practice; For staff to practice FCC, they need to have the resources and support when dealing with challenging situations (e.g. adequate staffing, knowledge of conflict resolution)
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.
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."
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."
"Does that sound strange?"
Diane Flacks checked in with us a year and a half after Catherine Dunphy visited in August 2006. I was happy that Diane focused on Pamela's story and that between candid moments you can see how parents grieve differently. We can argue about almost anything, including shopping lists, and I was about to say I don't remember any arguments between us over Sasha or her care but that isn't true. Small conversations bubble to the surface of my memory about whether to talk more with so and so, or for me not to take off an evening and go for beers with friends. Pamela's strength and presence let me checkout in some respects, at times. Each night she handed me a reminder list as she left around 11pm to endure sleepless night, pregnant and alone in our house before returning for another full long day at Sickkids. Weathering The Unimaginable was published in Saturday's Toronto Star.
Educational Documentaries on family centred care and interprofessional practise
The educational video effort organized by the IPP team is now in day 16 of filming and I was invited to talk about family centred care. For a few hours the director's focus changed from hand held camera to a fixed setup in the Atrium boardroom. I entered the room to find it taken over by crew and gear and was ushered to the makeup chair where Ava turned by ruddy complexion skin shade and I practiced some talking points with Marc. It was my first full make up and professional filming and I found the preparation fascinating in its adjustment of light tones, hairs and incredible concern about skin shine. I had only seen husband and wife director team Marc and Marcy Stone at the IPP retreat where they were continually lobbed pointed questions about the challenge of separating IPP and FCC into two movies so it was good to see them in their element, relaxed, focused and professional. It's a tall order to answer questions and present heart felt bullet points about family centred care in 20 minutes but I was very happy for the opportunity (though tight time slots are great practice for focusing on essentials). Unsure if anything I said was crisp enough to make two 30 minute videos I was relieved to hear that social worker David Nicholas has arranged for all footage to be used for further research.
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.
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.
CCCU IPP educations days
The Sasha Bella Fund has a half hour early morning slot at mandatory Interprofessional Practise education days in the Cardiac Critical Care Unit. There are seven days in January, February and March and we are very much looking forward to the opportunity to ask questions together that continue to improve communication between families and staff. Thanks again to nurse educator Cecilia Hyslop for the invitation.
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
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
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.
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.
A snapshot of the fundraising needs for paediatric palliative care at one Toronto centre of excellence
The Sasha Bella Fund for Family-Centred Care focuses our efforts on raising funds for SickKids Hospital for family-centred, interprofessional and palliative initiatives to help SickKids nurses, doctors and allied professionals continue to evolve advanced models for family communication. We think this is the best way for us to direct Sasha's experience to support other kids and care teams. We offer a parallel track to the highly successful large scale fund raising for expensive new equipment and research. While our focus is supporting critical 'soft' processes within SickKids Hospital we will forever be grateful for the sensitivity and expertise at The Temmy Latner Centre who, working with SickKids Hospital, organized a multi-disciplinary care team for Sasha in the community so that we could bring her home. Here are figures provided as of September 2007 by Temmy Latner Centre sharing the scope of the fundraising needs. All figures relate to The Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care.
Number of grief and paediatric palliative care referrals since May 2006: 136
Number of grieving or terminally ill children and their siblings supported since May 2006: 263
Number of community presentations since May 2006: 140
Number of classmates of grieving or terminally ill children seen so far this school year: 350
Number of people who did this work: 6
Number of new dollars needed to hire a counsellor skilled in children’s grief and palliative care: $80,000
Number of new dollars needed to develop and distribute education material: $10,000
Number of new dollars needed to buy equipment for teens to film their stories, for and about their families: $5,000
Number of new dollars needed to buy a years worth of journals and activity books for kids and teens: $2,000
Number of new dollars needed to fund a week long multi-media arts camp for kids and teens in The Unicorn Room: $3,000
The chance to make all of this available to the next child who needs us:
PRICELESS
Number of grief and paediatric palliative care referrals since May 2006: 136
Number of grieving or terminally ill children and their siblings supported since May 2006: 263
Number of community presentations since May 2006: 140
Number of classmates of grieving or terminally ill children seen so far this school year: 350
Number of people who did this work: 6
Number of new dollars needed to hire a counsellor skilled in children’s grief and palliative care: $80,000
Number of new dollars needed to develop and distribute education material: $10,000
Number of new dollars needed to buy equipment for teens to film their stories, for and about their families: $5,000
Number of new dollars needed to buy a years worth of journals and activity books for kids and teens: $2,000
Number of new dollars needed to fund a week long multi-media arts camp for kids and teens in The Unicorn Room: $3,000
The chance to make all of this available to the next child who needs us:
PRICELESS
Sasha Bella Walk for SickKids Family-Centred Care
A small family walk in the Cedarvale Ravine blossomed into the 1st Annual Sasha Bella Walk with over 100 participants, just before Sasha's birth date on June 6. Mom walked Sasha through Cedarvale almost every morning, hoping that the oxygen from the forest canopy would spur her tiny pulmonary collateral arteries to grow. The valley was lush green, the rain held off, the clouds kept the sun's heat hidden and cool breezes accompanied the sea of white T-shirts with Sasha's picture. No surprise that the first registrant at 9am sharp was Sasha's nurse Grace, soon joined by Lauren, Tessie, Riley and Julie. Family, friends, friends of family and friends of friends enjoyed the cool shady walk to the Bathurst Bridge and then back. The short walk was, as promised, short; perfect for the kids and many pregnant moms, some due any day. We then enjoyed snacktime of freezies and pringles as Terri and Oulina broke out the bongos and shakers and tambourines for a drumming circle that held back the rain.
We thank you all for your generosity and we appear to have doubled our modest goal of $3600 (have to get final numbers from SickKids Foundation for online support by those who could not join us). This was a learning experience for us in every way and Mom did such a good job. Permits and insurance. Invite emails with map, registration, pledge sheets. And of course supplier requests. Big thanks to Debbie Josephs at Kisko Products for freezies, Balloon Corporate Events for the pink balloons, Stanley Marcovici at Turnkey Corporation for the T garments and Peter Chaltas at Beaverbrook for discounted T printing.
At the end of a successful FUNdraiser, there is the lovely surprise of the stacks of little folded cheques and bills and pledge forms tucked into envelopes of all shapes and sizes that trace how friends spread the word to other friends, work colleagues etc. Meredith went around Toronto General Hospital's emergency and Sasha's nurses did the same at SickKids. Marni, Ryder and Jen, Granny Marcia, Mark and Lisa, Erika and Harvey, the Drego family all did a fantastic pledge job! Paul and Julie helped their daughter Micaela organize a bake sale and lemonade stand that raised $60 in quarters and loonies on a hot Saturday morning with a delicious assortment of frosted cookies and cupcakes and organic doggie biscuits [recipe and pictures coming soon] - way to go Micaela.
Pillow Angel: freezing growth
When I first read about Ashley I could only respect the incredibly difficult situation she and her parents were in. Aside from the sympathetic overviews of the ethics and critiques of the parents choices and the incredible respect for the care they put into explaining about Ashley on their blog I thought of a fragment of a conversation we had during one of Sasha's clinic visits as we waited in her cardiologist's office: if only she didn't grow anymore she wouldnt need more cardiac surgeries.
Beyond the veils: hope, hospital curtains and Family Centred Care
What do you first say to parents of a baby with a serious medical condition? Same as you would to parents of a healthy baby. Mazeltov. My brother in law told me this on an elevator ride to get coffee at Sick Kids as he visited Sasha. I remember him three years ago sitting squeezed beside his wife's bed, his new borne daughter's glass crib and the yellow curtain separating the next family. They were exhausted first parents who had just heard their child had a hole in her heart and suspected Downs Syndrome. They were both processing a lot of unknowns, focused on their daughter. Later, with Sasha, many people could not get beyond the jaundice, wondering if she was sick, tanned, or was maybe adopted. Her pallor varied by the day. Many people got it right. Congratulations. She is so feistey. She is a gift.
Typically I have little time for white lies but it seems to me this is about growing up and being nice while being there. A little mindlessness amidst a lot of mindfulness. Yet you have to watch the mindlessness or it bites you. Here is a conversation that repeats over and over. 'She is so cute. Thanks. Is she your first? No, Mia is our second. Oh, where is your first? Sasha died in June. Oh, I am so sorry, I did not know. That is ok, you couldnt know. I am so sorry. Thank you, it is ok, we are happy to talk about our little peach.' We have exchanges like this when buying kids clothes or standing outside a toy shop. Looking for bigger tops to cover Sasha's 56 inch girth, a very young sales associate asked: Why is your daughter so green? I prefered questions to looks away. Mom could get incensed. For me, even the 'Will she get better?' was better than nothing. The answer was: we didn't know. We talked for a long time about a mother in line with her son at Dairy Queen: she was nudging him to look over at Sasha and was making a face, Pam caught the nudge and the face but what she remembered most was the embarrassment of the young teenager and him nudging her back. Speaking can be heartfelt or mindless and to speak the truth always runs a risk of causing offense but we get better with practise. Speaking, or simply being there in support, is about being a mensch, doing the right thing. Its also about finding your own power. There is nothing more powerful than getting busy with a little messy emotion. Often its about listening, an extended wait that allows someone, if there is time or inclination, to share the truth. Too much small talk can be dangerous to your emotional health. A little small talk with a receptive open ear and heart can go a long way.
These were some of my thoughts after reading Rabbi Landsberg's web log Behind the Veil [in memory of Sasha Bella Stein Blumberg] where she shares newfound new mother emotions and likens web logs to processes of personal revelation. Imagining God's thoughts is an awesome lifelong endeavour. Imagining a bereaved person's thoughts when a loved one slips through a crack in their world may be hard but we can ask the bereaved. And then over the next few days the symbol of the veil expanded to touch on so many areas of life.
It has potent religous and philosophical meaning. Judaism, Islam and Christianity all controversially call for women to veil their heads. The temple was divided into 3 areas: for the public, for the priests, and behind a veil was the holy of holies. Christians believe this veil was broken with their revelation of Jesus of Nazareth as the messiah. As the Rabbi writes, the expression 'behind the veil' attempts to understand how God sees the world. Or to try see God acting behind 'nature'. A bedrock of modern capitalism is the "corporate veil". Within philosophy, there is the "God's eye view" as the answer to the subject-object dilema. The radical "veil of ignorance" from John Rawles holds that a just system requires those making the rules to be ignorant as to their own final status so that outcomes are fair whatever your social position. Where those making decisions know their place then "veil rules" can hide the impact of the decisions. And surely veils are as much about revelation as about deception as the destructive and positive power of states and supra national corporations are veiled with self serving propaganda and mythology. Boston University titled a 2002 conference "Behind the Veil: Reporting on the Drug and Biotech Industry".
I have never experienced more emotion and spiritual wonder than at SickKids Hospital, hoping for a medical miracle, another intervention that would help Sasha more than harm her or threaten her already fragile quality of life. I now see hospitals, like many other institutional spaces where lives are saved and others die, as holy ground. And like all institutions, hospitals have their own institutional veils, foremost to protect patient confidentiality but also in the highly specialised knowledge and language of the doctors and nurses. Formally, SickKids is committed to empowerment of the patient and an evolving ideal set of core principles termed Family Centred Care which we experienced. It is continual work to embed them within the practise of all interactions with patients and families. They appear in For Families > Coming to SickKids and in a more potent and ideal form in Volunteer > Family Advisory Committee section
- families receive the information and support they need throughout the course of their children's treatment;
- each family's beliefs, traditions, and ways of coping are respected;
- families are invited to share their knowledge of their children and their suggestions for their children's care, to ask the question they want and need to ask, and to help identify the goals for their children's care;
- families participate actively in all of their children's care and become full members of the care teams
These empowering guides are missing from the Strategic Directions call to action.
Toward the end of Sasha's life we met with palliative care workers and they pulled aside another veil which challenges the seemingly uncontroversial urge to intervene and hope for a medical miracle. In some cases, hope can be a four letter word. The natural state is the damaged and deceased and compromised body, our surgeons acting as the hands of God is not recent but the tremendous success are less than a 100 years old. We benefit from hearing 'curative' and palliative options throughout. With Sasha, we were clearly told by her cardiac surgeon that he would do his best but that based on the specific circumstances he could not be optimistic and there was no cure. We did not factor sufficiently the state of her liver into that conditional equation. Ultimately the final veil was Sasha's own physiology: she was not only beyond perfect knowledge but also complex enough to challenge multiple care teams at a world class paediatric hospital. Our hope is that we can see some institutional lessons together to strengthen the hospital in tiny but meaningful ways as a tribute to Sasha's memory. And so we humbly explore this veil and the family centred care principles that push aside this veil as every moment with careworkers are moments away from sick children.
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