TRAC-PG website launches

Two years in the works, was launched today with a content management software to allow the Team for Research with Adolescents and Children in Palliation and Grief to build content for TRAC-PG itself along with children, families, clinicians, volunteers, researchers, policy makers and advocates. Resources include Events Calendar, News Updates, Links, Key Reports & Documents, Education & Workshops, Literature Reviews and a Literature Database. Additional pieces will be phased in for email signup to HTML e-newsletter (replacing PDF attachments), Photo Gallery and member login with Comment. The team can add rotating photos on a per section basis, create text banners on 'sticky notes' on each section, tag or label stories for a tag cloud navigation and expand a Google map of the TRAC-PG network in Canada. Discussions in the fall of 2006 initially we also hoped to include a private login where staff, children in palliation and families in grief could communicate privately. After Sickkids IT department confirmed that Sickkids would be joining Carepages shortly and that a whole new website content system was in the works, we removed the patient-family-staff communication. By the fall of 2007, the work of architecting and designing the website began in earnest with the aim of an end of summer launch. And here it is, a little trimmer and a little later than the best laid plans but ready to help and celebrate palliative children and their families and remember (via one of the big home page images) Dr. Beverley Antle who was a strong force for Canadian family-centred research until her death in 2006 in the prime of her life due to a car accident, just a few months after Sasha died. Several big thank you's are in order: to the extremely talented and dedicated Gabriela Abrudan for designing and programming this elegant and highly functional site and for her patience with a very long project of the heart; to Laura Beaune who coordinates TRAC-PG research from Sickkids Palliative and Bereavement Care Service for somehow finding time to do all the visioning, discussion, feedback and status calls in the ONE very busy day a week she has at Sickkids - Laura's involvement in the site while dedicated to research supporting children and their families makes me confident the webite will have a positive impact; to Jodi Hamelin and Ashley Teschner for helping us finalize functionality and do most of the content population as part of their work with Palliative at Sickkids; and to my brother Kevin Blumberg for covering my time away from our joint work responsibilities.

Patient and Family Centred Ethics

The March 2008 Newsletter of the Canadian Bioethics Society includes pointed calls to action on the ethics of patient and family centred care by President Patricia Rodney and Sue MacRae, Former Deputy Director, University of Toronto Joint Centre for Bioethics. They are short and I quote them in full below, please view CBS's March 2008 newsletter to see them in the original, as well as the short analysis of concerns about the College of Physicians and Surgeons of Manitoba (CPSM) “Statement on Withholding and Withdrawing Life-Sustaining Treatment”. has an archive of past newsletters.

Sickkids Hospital has a Department of Bioethics affiliated with the University of Toronto Joint Centre for Bioethics. Unfortunately the website for the department is currently missing in action (I emailed the web team and hopefully the resources can be recovered). The Director of the Department of Bioethics at Sickkids Hospital is currently Christine Harrison whose primary area of research interest is identified as "ethical aspects of health care decision-making for and by children, complementary and alternative health care, and end-of-life care for children."

Christine Harrison is also past president of the Canadian Bioethics Society and her February 2002 President's Letter tells the poignant personal story of her mother's death and lessons she drew from it:
"This year’s annual meeting was the first one I have missed. The day I was meant to fly to Winnipeg my mother was admitted to hospital; she died a week later. A couple of months earlier, after two misdiagnosed UTIs, she discovered she had very advanced bladder cancer, for which she declined surgery. (This was fortunate, as another ‘medical error’ had missed the fact that it had already spread to her spine). There is no palliative care physician in our city of over 100,000 people, and her pain was not managed well. I don’t think that, for her, her death was particularly better or worse than for many others. I would like to be able to say that she got good, or even adequate, medical care in the hospital, but I cannot because I never spoke to her physician. Her nurses, social worker, and case manager promised to tell him that I had questions and would appreciate being well informed. I can’t say if this was charted, as I was refused permission to look at her chart. He did write me an almost legible note on Monday, saying that he had a hunch that my mother would be discharged by the end of the week (she died on Wednesday). We waited for some test results for several days (we thought she might have had a stroke) – finally my mother’s ‘roommate’ told us that the doctor had told my mother several days earlier the results of the tests (my mother did not remember this). We received flowers from her physician after her death, but I have still never spoken to him.

As a daughter I am angry and sad. As a bioethicist I am frustrated. Over the past two decades or more we have argued eloquently of the obligations to care for the dying, attend to their pain and suffering, and to the needs of their families. Studies have been published identifying these needs. We write policies and reports, we speak, and we teach and teach and teach. Yet from the stories I am told my experience appears to be the norm rather than the exception."
Christine ends by stating: "We do need to work together in a variety of ways to ‘speak up’ more effectively so that our words and our convictions result in positive changes in the world –
otherwise, we’re just talking to each other." Read the full letter in its original to see some of the work-a-day detail when medical professionals and ethicists viewpoints collide.

Canadian Bioethics Society President Letter, March 2008 - Patricia (Paddy) Rodney

"…it is vital that you are aware not only of your working definitions of family and health but also of how those definitions are shaping and perhaps constraining your practice (Hartrick Doane & Varcoe, 2005, p. 24)."
I believe that Hartrick Doane and Varcoe’s call is a moral imperative — an imperative
that is in urgent need of more attention in contemporary health care ethics work. Nelson and Nelson (1995) observed over a decade ago that health care agencies and families were two systems of care that were “rubbing each other the wrong way” (p. ix). Sadly, this remains true today. In health care delivery and health care ethics work we encounter, for instance, angry relatives in acute care who are fearful we will too hastily withdraw treatment from their loved ones; parents coping with complex and serious illnesses of their children and trying to decide what is in the children’s best interests; frail seniors who are isolated from their families and coping at home on a razorthin margin of safety; exhausted women looking after children and seriously ill relatives in the home; rural families trying to cope with the costs and disruption of sending their loved ones to the big city for specialized treatment; and homeless people who are seriously marginalized in their attempts to access health care and have no family present to advocate for them.

Improving the ethics of practice with families requires that all of us operating in health care re-visit what we think we know. Following through with the examples above, this means that we need to realize that what we see as families “demanding” excessive treatment may in fact be a reflection of their fear of abandonment; “pushy” parents may have quite legitimate interests in having their voices and the voices of their children more carefully attended to in treatment decision–making; frail seniors are not necessarily “choosing” to “live at risk” but may be coping as best they can with minimal resources at their disposal; women caring for children and seriously ill relatives are not necessarily just fulfilling their "responsibility” but may be seriously constraining their own quality of life; rural families ought not to have to “bear the consequences” of where they have “chosen” to live; and homeless people are not “frequent flyers”, but are people who distrust the mainstream health care system and often seriously delay accessing badly needed acute care.

Ultimately, then, in contemporary health care ethics work we need to foster a better understanding of how sociopolitical contexts affect health and health care for families, and we need to foster a much more finely tuned ability to reflect on widely held biases and assumptions. Both are required if we are to engage with families and family members in a manner that promotes mutual trust and collaboration (Hartrick Doane & Varcoe, 2005; Nelson & Nelson, 1995). It is therefore most fortunate that the 19th Annual Canadian Bioethics Society Conference1 this year is devoted to the topic of the family. Our colleagues in Newfoundland have planned a wonderful event that promises to bring together enlightening plenary and concurrent sessions that can help us to promote more ethical practice with families.

I hope to see many of you there.

Paddy Rodney, RN, MSN, PhD

1. St. John’s Newfoundland, June 18th-21st, 2008.
2. Hartrick Doane, G., & Varcoe, C. (2005). Family nursing as relational inquiry: Developing health promoting practice. Philadelphia, PA: Lippincott, Williams, & Wilkins.
3. Nelson, H.L., & Nelson, J.L. (1995). The patient in the family: An ethics of medicine and families. New York: Routledge.

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Patient - Centred Ethics: It's Time Now! - Sue MacRae

In 2001 in my response to the “Clinical Ethics Revisited” article written in BMC Medical Ethics by Singer, Pellegrino and I called on clinical ethicists to pay more attention to the direct human needs of patients and families.1,2 The article didn’t get much traction in the clinical ethics community at the time. I imagine that is because those in clinical ethics were more focused on issues around clinical ethics professional development, identity and support for bioethicists in the midst of this complex, difficult work. But things have changed. We have matured in the last six years and now have a solid foundation in our community. I believe we can make a real difference in addressing patient needs and I suggest we do it sooner, rather than later.

I could argue that a new emphasis on patient centred ethics is a good thing because of the increasing emphasis on patient-centred care in our hospitals, or I could say how it nicely fits into the new inter-professional education and collaboration paradigm now popular in healthcare. I think there is an even more important argument however and that is that the narratives coming out of our own professional and personal experiences are becoming too convincing and too disturbing to ignore. If you have a friend or a family member who has had a recent encounter with the health system, chances are it is not hard to find places where things could be improved. The fact remains that healthcare is not meeting basic needs of patients and families who seek care and we do not have a deep enough understanding of the role ethics plays. The patient and family stories I heard on a weekly basis while I was working in ethics ranged from horrifying to hilarious. A recent trip down the hallway in a major Toronto hospital left me wondering who on earth thought that putting a huge sign in a patient hallway saying “standardized patient program” was in anyway a good thing as far as the people coming to the institution for care were concerned. We hear of far more tragic stories regarding patient safety and the lack of ethics infrastructure. They are problems encountered not just in one institution and not just in a unit where a vocal patient has made a complaint. The challenges regarding respect, communication, continuity, access coordination, family care, emotional and spiritual support are rampant through the systems of healthcare worldwide.

A few years ago, a number of students and faculty from the Joint Centre for Bioethics started some important work teasing out the beginning of patient-centred ethics. Peter Singer et al. wrote an article on reconceptualizing advance care planning from the patient’s perspective in 1998.3 A year later, Peter, Doug Martin and Merrijoy Kelner wrote a landmark article in JAMA on patientcentred end of life care.4 Also Steve Workman wrote his MA thesis on futility in this same era comparing healthcare professional and patient perspectives and recently published a related article.5 I propose that we extend this patient centred ethics work in the wider clinical ethics community and become leaders in Canada in incorporating patient and family perspectives in the work of clinical ethics. It seems like a big task but lessons from patient safety, palliative care and elsewhere provide models of how this can be done.

From my perspective, we can go a long way with a few initial steps. To start with, I think we need to learn how to listen to patients in a balanced, fair way. I mean really listen. We have to see it as our place to listen to these stories and let patients be the heroes in their own stories, as Arthur Frank has said. Secondly, we need to find ways to avoid describing patients with the same old clichés, for example that patients are crazy, demanding and unreasonable. For anyone who has actually done research with patients and families, one finds pretty quickly that what patients and families are asking for is often very little. And for the individuals who do get damaged by the system, maybe giving them a place to tell their story will be a space that no one else in the healthcare setting can afford or is willing to offer. But listening is only the beginning. We need a far better understanding of what patients’ and families’ ethics issues really are and we need to understand their experiences in these ethics conflicts. This may help us realize that much of the way we currently define the field of ethics is grounded in the ethical dilemmas of health care professionals. We need to do serious research. We should set up patient advisory councils in major ethics centres to help keep our work grounded in these views. And then we might have the building blocks to begin to create new patient-centred theoretical frameworks that describe common ethical problems that are inclusive of patient and family perspectives.

None of this downplays the importance of paying attention to the needs of healthcare professionals. After all, everyone in this community knows all about the high levels of moral distress among our healthcare colleagues. It is also the case that satisfied staff means more satisfied patients. I personally like the work out of the Fetzer Institute in the US on relationship-centred care and think this might be a model that would allow for a way to address the complex relationship needs emerging between patients, families, health care professionals and institutions. The essential elements of relationship-centred care include critical selfreflection
to enhance self-awareness; employing a caring, healing ethic that preserves the dignity and integrity of the patient; elimination of power abuses or inequalities; and encouraging active patient / family collaboration.

In the end, I think it comes down to committing to stand behind our ideal of being a resource to everyone in hospitals, including patients and families, and really mean it!

Sue MacRae, Former Deputy Director, University of Toronto Joint Centre for Bioethics

This piece was adapted from the original article printed in the Joint Centre for Bioethics Newsletter in September 2007.

1. Benatar, SR, Bhutta, ZA, Daar, AS, Hope, T, MacRae, S, Roberts, LW, Sharpe, VA. Clinical ethics revisited: responses. BMC Med Ethics. 2001. 2: E2 11346457
2. Singer, PA, Pelligrino, ED, Siegler, M. Clinical ethics revisited. BMC Medical Ethics 2001. 2:1
3. Singer, PA, Martin, DK, Lavery, JV, Thiel, EC, Kelner, M and Mendelssohn, DC. Reconceptualizing advance care planning from the patient?s perspective. Arch Intern Med. 1998. 158: 879-884.
4. Singer, PA. Martin, DK and Kelner M. Quality end-of-life care: patients? perspectives. JAMA 1999. 281: 163-168.
5. Workman, S. Mann, OE. No control whatsoever: end-of-life care on a medical teaching unit from the perspective of family members. QJM. 2007. 100(&): 433-440.

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Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment (JAMA)

The October 8 issue of the Journal of American Medical Association reports on a multi-site study of patients with advanced cancer and their informal caregivers from September 2002-February 2008.

The context for the study was that "Talking about death can be difficult. Without evidence that end-of-life discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern of inflicting psychological harm."

The results of the study, based on the 37% of patients who had end of life discussions before baseline, was that such discussions were not associated with higher rates of major depression or more worry while such discussions were associated with lower rates of ventilation, resuscitation, ICU admission, and earlier hospice enrollment. More aggressive medical care was associated with worse patient quality of life and higher risk of major depression in bereaved caregivers whereas longer hospice stays were associated with better patient quality of life. Better patient quality of life was associated with better caregiver quality of life at follow-up.

The study concluded that "End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment."

See full abstract

Disclosure of medical error

One of the worst scenarios a family can face is a serious medical error. Having been at the bedside for months, I knew that the risk of an error grew with the expanding number and complexity of interventions and time in the hospital. Having met and been greatly impressed by several hospital staff working to improve patient safety, and the manner that they are including parents on committees, I found the following abstracts focusing on systems and patterns of disclosure of error to be quite interesting. The final article suggests that if there is a gap between policies and practise of open disclosure, explicit focus is needed not just on education but also on uncovering the barriers to implimentation of open disclosure policies.

A System Of Medical Error Disclosure (2002): Such a system can result using clear disclosure policies and procedures sensitive to patient and family needs, open communications with concerned, committed, and compassionate system representatives, and use of mediation methods that foster communication, allow for venting, and are flexible in their approach to resolving conflict, including using apology. Although a system may also result in conflict resolution costs, more importantly it may foster and solidify a team approach to reducing errors and promoting patient safety.

What Makes An Error Unacceptable (2004): Results. While the severity of the outcomes of errors remains the most important single factor in the choice of actions to be taken, the professional’s approach to the error is regarded as essential in the overall evaluation of errors and the consideration of consequences. In errors with a severe outcome, an honest, empathic, and accountable approach to the error decreases the probability of participants’ support for strong sanctions against the physician involved by 59%. Judgments were only marginally affected by respondents’ characteristics.

To Tell Or Not To Tell (2006) One published study [1] disclosed that only 50% of house staff physicians who admitted making serious clinical errors disclosed their errors to medical colleagues, and only 25% disclosed them to the patients or their families. In another published survey of laypersons, only a third of respondents who had experienced medical error said that the physicians involved in the error had informed them about it [2]. Still another survey asking European physicians whether they would disclose a medical error to patients found that although 70% responded that physicians should provide details of such an event, only 32% would actually disclose the details of what happened [3]. A similar percentage of American physicians, 77%, echoed the same opinion [2]. A British researcher explains this reluctance to disclose by pointing out that physicians who commit medical errors frequently question their own competence and fear being discovered; they know they should confess but "dread the prospect of potential punishment" [4]. These reactions are "reinforced during medical training; the culture of medical school and residency implies that mistakes are unacceptable and point to a failure of effort or character." Why physicians may choose to cover up rather than disclose an error was illustrated in a letter to the editor published in the Journal of the American Medical Association [5]. The letter described an incident in which a medical resident's employment in a Chicago hospital was summarily terminated after he voluntarily reported committing an error that led to the accidental exposure of a patient to HIV. The letter writer speculated that the resident's career would have remained intact and unblemished had he chosen to remain silent about the error and voiced concern that this incident would encourage an atmosphere that rewards lying. Certainly, many physicians believe that admitting mistakes invokes the so-called shame and blame mentality [6], thereby precipitating medical malpractice litigation [7-9] and leading to loss of referrals, hospital admitting privileges, preferred provider status, and even licensure [10, 11]. Other researchers [12] have emphasized that being subjected to a malpractice lawsuit is "an extremely powerful punishment that strikes at the heart of the professional's self-image as a caring and competent physician." The question of whether mistakes or errors committed by physicians should be disclosed to patients affected by them is no longer debatable. The preponderance of legal opinion, regulations of federal and state agencies, and policies of professional organizations all favor the physician's complete disclosure of all facts and information relevant to a patient's health, including complications of medical procedures and iatrogenic errors and injuries [13-16]. But the question of what physicians should say to patients as part of the disclosure of an error—in other words, whether they should apologize and, if so, what that apology should include—warrants further discussion.

Health Care Professionals' Views Of Implementing A Policy Of Open Disclosure Of Errors (2008): Results: Health professionals are positive about open disclosure and are applying the model to patient–clinician communication encounters more generally. Workforce and systems competencies enable clinicians and health service managers to implement open disclosure principles and practices, although a propensity to hide errors, wavering commitment and to exacerbate the problem inhibits implementation as policy intends. The gap between policy objectives and their implementation limits the benefits to health professionals.

Conclusion: Health services must develop organizing capabilities if open disclosure is to be implemented as intended. Activities should identify and address factors that impede implementation and enable workforce and system competencies to develop. These activities will allow health services to adapt central open disclosure policy to local conditions and to embed its principles and practices organization-wide.

Canadian child and youth health experts gather in Edmonton next weekend

Beginning October 19th, an amazing array of Canadian child health experts will gather at The Westin Hostel, Edmonton, in what will no doubt be a whirlwind of learning, sharing and innovative brainstorming.

Canadian Association of Paediatric Health Centres (CAPHC) Annual Meeting
Transforming Services for Children and Youth - Turning our Thinking Inside Out!
October 19 - 22
2008 CAPHC program

Canadian Child and Youth Health Coalition (CCYHC) Annual Symposium
Health Human Resources for Children and Youth: What have we leaned and where should we go?
October 19 - 22
2008 CCYHC Symposium Program

Canadian Network of Child and Youth Rehabilition (CN-CYR) Annual Workshop
Trends and Changes in Pediatric Rehabilitation : Impact on Children and Families
October 19, Manitoba Room
2008 CN-CYR Workshop Program

Canadian Family Advisory Network (CFAN) Annual Workshop
October 19, Turner Valley Room
2008 CFAN Annual Workshop Agenda

This blog welcomes speakers sharing presentations or participants sharing reviews using the Comment below or by emailing blog AT (replace AT with @ and remove spaces).

Canadian Family Advisory Network requests input for new initiative on child and family inclusion in our health system

Dear All,

This is an invitation to all of you to participate in an initiative to improve the experience of children, youth, and families in the health care system(s) across Canada. It will be launched at the annual workshop of The Canadian Family Advisory Network (CFAN) on Sunday, October 19th in Edmonton, but you can each contribute something valuable even if you can't be there.

The initiative's origins lie with The Canadian Child and Youth Health Coalition, of which CFAN is a relatively new member. (Information about the Coalition can be found at In its "Strategic Plan for 2008 and Beyond", the Coalition proposed, among other things, to "take a fresh look at the way in which children and their families are included within the ... health care system." Part of the task is to address concerns about "significant variability across institutions" and across and even within provinces and regions. And our Coalition partners saw CFAN as being "centrally engaged in this initiative."

This is an exciting but daunting task, but fortunately our coalition partners, including CAPHC, the Paediatric Chairs, the Surgical Chiefs, and the Mental Health Consortium are eager not only to support the initiative but to become directly involved. Dr. Bob Armstrong, Co-Chair of the Coalition, will be taking part in the Edmonton workshop as will CAPHC representatives. As well, our new collaborators from The Canadian Association of Child Life Leaders are also keen to help advance the initiative. And then there are the Children's and Youth Councils which would also seem to be natural partners.

The initiative will not be limited to considering the experience of children, youth, and families within health care institutions. We know how small--though crucial--a segment of the experience that usually is. But we're going to start with the in-hospital and in-rehab centre experience in part because evidence is--we're assuming--more easily gathered about that part of the experience.

In Edmonton we'll be devoting 75 minutes of our workshop to the initiative. In that time we'll be asking everyone

1. to identify everything that should be on the table in the initiative's first phase. Already we've heard that pain management, sibling support, ready access for patients and families to critical care response teams, easier ways for families to report patient safety concerns, family-to-family support, matters related to "informed consent," and "the weekend experience" should be among the topics addressed. We know there are many more--some of which may be entirely different So if you're going to be in Edmonton, please think of what you'd like to add. And if you're not, please let me or Tamara Krbavac (krbavac AT , CFAN's other representative on the Coalition Steering Committee, know what for you is a "don't miss" item.

2. to choose, or to volunteer for, a small working-group to help lead the initiative for at least the first year. The working group will have teleconferences (roughly once a month) and direct the "evidence gathering" that will inform and support the recommendations that emerge. Please give some thought to joining the group.

3. to help define the scope of the initiative. (Should we, for instance, be looking beyond Canada to identify best or leading practices?) and

4. to identify other projects that this initiative should be linked with and existing sources of information that the initiative should tap into.

If you have questions or suggestions, please get in touch with Tamara or me. And please reflect a bit on your experience and then contribute the fruits of that reflections to the initiative, thereby making a difference in the experience of others.

Frank Gavin
Chair, Canadian Family Advisory Network (CFAN)

Contact Frank Gavin at frankgavin AT

In defence of passionate parents

Parent stories are central to family-centred care and Sickkids Hospital has woven parent stories into hospital staff education, principally through the excellent work of parents on the Family Advisory Committee but also through informal inclusion of parents like myself who approach the hospital about challenges and concerns. I wish more parents were involved but the reality is that sharing difficult stories is not easy and we all have families and busy lives. It is even harder for parents who have children in care to be involved in such parent presence. Not only can the needs of complex care kids be all consuming but it takes a special confidence and belief in the professionalism of Sickkids staff to speak publically about your child's care while they are still in care. The role of parent advisory is different than that of parent presence in that parents who volunteer for committees are expected to use their experience in the wider discussion but not to use the forum as a focus on their child. With Sasha's death, and having been offered numerous opportunities to speak about our experience, I can contribute to a family care group without talking about Sasha specifically. Naturally one of my interests, which is shared widely across the hospital, is that staff are educated about the difficult discussions regarding end of life.

One of the first questions I posed to myself before a presentation was when do I name a Sickkids staff member? It seemed difficult to focus on communication and interprofessional practise challenges without mentioning departments. The route I took was to celebrate what worked and share my concerns while only naming Sasha's primary physician. I did so in the context of deep appreciation for her tireless communication, my feeling that she got us and my knowledge that behind the scenes she was pulling the team together. So I mentioned her name while talking about issues having stated my appreciation for our primary physician's professionalism.

The reason for my question was the realization that Sickkids professionals cannot talk about other families due to strict rules of confidentiality and most staff find it inappropriate to speak negatively about the actions, perceived inaction or general 'bedside manner' of colleagues. The refusal to mention one family to another may prevent families from learning from other families going through similar experience, hence my interest in forums where parents support other parents and ways that Sickkids can advance this. But it is hard to argue with the general rule that patient-physician confidentiality is a sacred trust and it should be said that, informally, social workers sometimes do speak to both parents and thereby introduce them where they think this will be helpful. Some parents are so called parent ambassadors, giving other parents tours of the units. Staff unwillingness to discuss other staff is a different matter and may relate to staff concern about the accuracy of the hearsay or simply not wanting to rock the boat as it would be a rare physician who felt they had never made a mistake or had not grown in learning through experience.

One nurse in particular mentored me on this point when she invited me to participate in a communication forum and scheduled a phone conversation to orient me. During this call she explained who would be speaking and requested that I show up for the presentation prior to my own. I am grateful for this request as I heard of a study looking at families labeled "difficult parents" where in five out of seven cases the proximate characteristic leading to staff considering the parents difficult was an agonizing period of medical uncertainty about the child's condition. The presenter called this period one of "unresolvability" and a light went off in my head: we had experienced not days but weeks of uncertainty about what was causing Sasha's unexpected deterioration in ICU after her second cardiac surgery. So I began my talk, focused on difficult conversation moments, by telling the presenter that she had just helped me understand why we panicked, ramped up requests for information, adopted a vigilant tone with staff and increasingly worried about our daughter's care.

The nurse made a second request: please do not name Sickkids staff during your presentation and try to not name specific units or departments, for example, talk about ICU rather than name the specific ICU. She explained Sickkids staff are bound by confidentiality rules and she thought it appropriate for parents to equally respect the privacy of staff when I spoke in a public venue as the staff may not be present or if present may be uncomfortable responding directly. I agreed and since then have tried my best to not name names when talking about problems. I have mentioned names when I thank staff for supporting parents and family-centred care as I feel that is OK publicity. Should any staff request I remove them from this blog I would do so, though this has never happened. Not only did this nurse guide me on the unfairness of naming staff names but she stood beside me during the short presentation, facing her colleagues throughout, as if in her body language to offer me support. Moments like these can be transcendent in creating trust between parents and staff. So I feel deeply moved when I hear parent stories that do not echo this professionalism. When a child's care, in the minds of the parents, goes off the rails, all it takes is one deeply committed and caring individual to right the balance.

I realized later that the nurse's request is sound for more than reasons of parent and staff equality or basic courtesy. In a prior post I wrote about how sociologists have determined that people trying to figure out the cause of an event very typically emphasize the people and personalities involved, as opposed to the environment and systems at play. This is understandable because often people cannot see the systems at play while communication styles or the choice of words used by a physician or nurse or the absence, vagueness or lack of communication followup is 'in your face' so to speak. This is not to ignore staff who communicate poorly but simply to say, lets focus on the care issues and not focus on people and personal styles. The people may be the issue, I am not ruling that out, but when there is conflict, the hospital can bring in other staff such as social workers or in particularly difficult cases parents can bring in the Patient Representative to allow the focus to return to the best care for the child. One parent adviser said it simply in an educational lecture to staff: where there is conflict with parents, focus on the care issue, not the parent.

This is a long response to a comment posted on this blog that named a parent as "insane". I noticed when transcribing Ian Brown's presentation that he talks about how constant care amid great uncertainty and without adequate medical communication and support would drive any parent "insane". But I also return to that nurse and the communication workshop; when I entered the room, two senior nurses were engaged in a common, productive communication exercise where the audience lists pejorative words about parents and then translates them into affirmative words. So where the writer of the blog comment sees a "completely and utterly insane" parent who will "scream bloody murder", staff can choose to see a passionate, exercised and dedicated parent who is vocal and needs to be listened to. You say "Being afraid of parents makes it hard to treat their children." I completely agree. Why should staff be afraid? Why is there not a relationship of trust? Please listen to the parent, perhaps even say sorry it has taken us so long to figure out a long term care plan and let the focus return to the child and not the perception of the parent's behavour. Mistakes will happen, some families will feel ignored. The way to avoid lawsuits is open, empathetic communication. Reestablishing trust with an angry parent may not be easy but it is necessary for the good of the child as that parent will be caring for their child throughout their care plan with the hospital and interacting with hospital staff throughout. The labels "dangerous" or "insane", whether directed by staff to parents, by parents to staff or by parents to other parents, have no place in a hospital dedicated to advancing interprofessional family-centred practise.

Ontario 'Sorry' law will make it easier to apologize to parents

Any hospital trying to push the envelope as carefully and considerately and with the best research backed proceedures possible will nonetheless inevitably see mistakes happen. The patient safety reps can reel off the stats on how many dosage or equipment mistakes occur that contribute to deterioriation and death. They can also talk about the strategies in place to avoid mistakes, including effective partnership with parents. This is not controversial. What is more controversial is how the hospital responds. A little while ago I heard a woman describe how a doctor overdosed her partner during an operation. The doctor came to her with tears in his eyes, not only saying I am sorry, but asking how she wanted him to proceed. This doctor was big enough to see not a lawsuit but an immediate need for open communication and empathy and an apology.

For all parents and staff who agree that staff fears of lawsuits create very difficult working conditions, Ontario's new 'Sorry' law could be a giant leap for family-centred resolution of adverse events. The law makes it possible for individuals or institutions to apologize without the apology being construed as evidence of liability in a future legal dispute. The article quotes The Lawyers Weekly analysis of B.C legislation: "Evidence generated on American and Australian doctor’s apologies show improved patient satisfaction, a decrease in repeat errors and reduced cost and frequency of malpractice settlements."

Uncertainly and parent - staff communication : Ian Brown at Sickkids

On Wednesday, Ian Brown shared stories about life with his son Walker to a packed audience of several hundred Sickkids staff. He called for continued work to create an extended community of support, clearer communication by doctors even when facing great medical uncertainty and recognition of the essential equality of the cognitively able and cognitively challenged.

Brown began by noting the appropriateness that Dr Norman Saunders was Walker's pediatrician as it was in Saunders' honor that the Saunders Complex Care Initiative was begun at Sickkids. He then used the opportunity to share challenging experience, prefacing his remarks with the fact that there were only 8 known cases of Cardio-Facio-Cutaneous (CFC) Syndrome in 1996 and in the following years this number has risen to only around 100.
"Complex kids leave you guessing all the time and uncertainty is not something doctors like. Because it makes them feel at the bottom of the class. That explains the little sigh of resignation when we visit the hospital."
"These children are a new genre of human being. Children who are saved by brave and brilliant science... What brave medicine or brave society does is send the child home with the parents to go insane with this new human being.... We wondered why we were never told anything. It took us a long time to figure out they didn't know. And they didn't know to explain this."
Brown contrasted the intimate knowledge of the pediatrician with the many other hospital staff Walker would meet over the years. He couldn't understand "why we kept repeating his history".

One day Brown brought Walker down for an MRI. They had to be at the hospital at 8am, meaning a very early wake up for the family. Brown then follows Walker's every move as he dashes around the playroom and clears any table he can find for 4 hours. At this point they are let in to another room where they finally meet the anesthesiologist who has noticed Walker has a heart murmur and does not wish to proceed with an anesthetic. Brown is incredulous that this would not be known to the doctor. He tells the doctor to please call dentistry as they sedated him two weeks prior for a dental procedure. In the end they return home. "In my humble opinion, a complex care program program worth its name would maintain a central record keeping facility." The story illustrates that in complex care cases, parents typically know more about the details of their child's care than staff meeting the child for the first time.

Brown alternated constructive criticism, often prefaced with "You know I love Sickkids, but...", with over sized metaphors that drew knowing laughs from the Sickkids audience. Brown's main points however should not be missed.

"This is a new human population. The only way to care for them is through an extended community. Maybe they need a dedicated waiting room. Maybe dedicated staff." He called for better communication and remembered an interesting study the family stumbled on. "I didn't hear about the new gene from Sickkids. I wonder why? Why didn't you send me an email saying have a look at this study."

He asked doctors to not lose sight of the family and their often modest hopes amid the medical chatter of confusing conditions. "If you create this extended community to care for this new type of mysterious and very rewarding child, you do not have to be a hero, you just have to be alert."

Brown considers that Walker at 12 has the mental age of a 2 year old and they communicate with little clicks of the tongue. Looking back on the experience, Brown called for parents and staff to premise the difficult work of care upon equality:
"I accept him as my equal. He is not the same. He taught me to communicate through something other than words and logic... It's like a blind date. You never know what will happen. You don't know if you want to go there, but you have to stay in the present."
To Brown, Walker is "frail but not weak" and ultimately he epitomizes that "great spirit matters".

This was a parent presentation that I suspect will be remembered by everyone in the room and will impact on practise in small and large ways to the benefit of many families. It is to the hospital's credit that the tradition of Grand Rounds could centre on the challenging story of Walker Brown and the difficult journey of his family.

The above quotations were transcribed by hand and I have done my best to precisely record Ian's exact words. Any errors are mine alone.

Read more about CFC at CFC International: Caring, Facilitating, Connecting
Read more about Dr Norman Saunder's legacy of care for complex kids

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

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

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

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

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

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

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

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

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

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

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

Ian Brown and L'Arche

Ian Brown has written about Walker and you can read web excerpts of "The Boy In The Moon". Brown's public quest to understand Walker, his relationship with Walker, and his difficult decision to put Walker in an institutional care setting lead to a dialogue with the L'Arche community founder Jean Vanier about the challenges and rewards of living with the profoundly differently abled. Read about the genesis of what L'Arche Canada called "an inevitable encounter".

Brown's "Doing the Work of the Heart" (now requires paid access) was a first introduction to many of this dialogue and is an amazing article. I found a lovely excerpt:
Ian Brown writes, "I said: 'I have a language with my handicapped son, who can't speak, where I connect to him by clicking my tongue.' The whole half-assed idea just came blurting out of me. 'And he recognizes it, and sometimes responds. Sometimes that feels like praying to me.'

'That is praying,' Mr. Vanier said. 'You see, praying is not doing. It's a moment when we're clicking. A lot of people don't know that. And because they're not going to church on Sundays, they feel guilty. They don't know they're praying. Through compassion. Through peacefulness and thankfulness for who you are. For the body you have, for the age you have, for the family, for the flowers that you see outside. Gratefulness. Prayer is communion and gratefulness.'

'So prayer,' I said, 'is a way of reminding ourselves' '- to be who we are,' he said."
From Passage Des Perles

Ian Brown & Dr Chris Feudtner discuss staff-parent partnership for children with complex chronic conditions at Sickkids

"Partnering Leadership in the Care of Children with Complex Chronic Conditions"

Ian Brown & Chris Feudtner, MD PhD MPH

October 8th, 2008, 9:00am – 10:00am EST

SickKids Main Auditorium (The Hollywood Theatre)

How can we improve the medical care provided to children with complex chronic conditions and their families, especially when we have to make major decisions in the face of uncertainty? This presentation considers the role that partnering leadership, between parents and health care professionals, can play in answering this important question.

Ian Brown is a renowned reporter who authored of a series of articles in The Global and Mail recounting his experiences of his son, Walker, who has a rare genetic disease; an expanded version of these articles will appear in a forthcoming book, The Boy in the Moon. He is also currently the host on TVOntario of Human Edge and The View from Here.

Chris Feudtner, MD, PhD, MPH, is assistant professor of pediatrics at The University of Pennsylvania School of Medicine and attending physician and director of research for the Pediatric Advanced Care Team (PACT) and the Integrated Care Service (ICS) at The Children’s Hospital of Philadelphia (CHOP). In these roles, Dr. Feudtner both provides care to children with complex chronic conditions and investigates ways to improve the quality of life for these children and their families. He has also the Director of the new Department of Medical Ethics at CHOP.

Learning Objectives:

1. Define the role that partnering leadership can play in guiding and improving complex care.
2. Recognize how uncertainty and emotion influence decision making
3. Describe 5 simple methods to enhance partnering leadership

Grand Rounds sponsors: Sickkids, Sickkids Palliative Care, Tele-Health

Parent Charting : a family-centred breakthough whose time has come

I recently joined the PFACNetwork, an email list serve for staff and parents involved in family advisory work. As part of the new NICU family care committee I undertook to gather information about parent charting, which is the involvement of parent's in their kid's hospital chart. This involvement can extend from helping nurse's observe and measure liquid output to being responsible say for occupational therapy 'scores' for your child to direct parent input of data into the electronic care plan. In my dreams, I imagine a time that a parent can click on a link, enter a username and password and hit Comment. Up pops a little field into which the parent writes about positive moments and challenges, questions, reflections etc. Now the parent's thoughts are recorded forever beside those of the staff.

I was grateful to Joanna Kaufman, RN, MS, Information Specialist at the Institute for Family-Centered Care for recommending the article "A hospital takes up the challenge of offering patients open access to their charts as well as directing me to Dr Ted Eytan's blog focused on electronic health record issues. What becomes quickly apparent is that the main focus of parent charting is on the 1) the desire by adult patients to access a portable electronic chart that they have more control over 2) leading to a range of new services offering online charting, from Revolution Health to Google amid 3) perceived time savings and increased accuracy as medical staff update electronic charts in real time.

That "parent charting" in a paediatric setting is still in its infancy is confirmed by a 2005 study that interviewed nurse managers at 61 U.S NICUs to learn about parent participation in a range of NICU activities and which reports:
"Sixty-two percent of NICUs routinely allow parents to be present at medical rounds; 33 percent do not; and 5 percent allow it some of the time. Of the hospitals that allow parents to be present, 76 percent encourage parents to participate in the discussion while 13 percent report participation is physician dependent. Only 26 percent of the NICUs have a written policy regarding parent presence or participation in medical rounds. Substantially fewer parents participate in nurse shift changes. Only 25 percent of hospitals indicate parents are routinely allowed to be present, while 13 percent allow it some of the time. Few units encourage participation in shift change discussions. Parents are allowed to read their child’s medical record in 91 percent of responding NICUs. However, an overwhelming majority of units require or encourage parents to have staff present when the chart is read. Only 3 percent of NICUs allow parents to enter notes in their child’s record. (emphasis added)" ("Family Centred Care in the NICU", Children's Hospital's Today, Winter 2005, Mitch Harris, George Little M.D)

Institute for Family Centred Care training seminar in Calgary - October 27-30

I have been negligent in not writing up the wonderful work of the Institute for Family-Centred Care whom I reference in the parent charting notes. I was amazed to get through to one of the advisers / staff on the phone immediately and she then put me in touch with two other advisers with relevant experiences in other hospitals.

The IFCC will travel up from Bethesda, Maryland to hold an intensive training seminar in Calgary from October 27-30, 2008 titled Hospitals and Communities Moving Forward with Patient-and-Family-Centred Care: An Intensive Training Seminar Enhancing Quality and Safety for Patients and Their Families.

Their latest research effort is the 178 page PDF titled Partnering with Parents and Families ... Recommendations and Promising Practises.

Their Resources section offers a wide range of free downloads and for fee booklets focused on family centred self-assessment and support for parent involvement and family advisory.

Two beautiful days in the life of The Sasha Bella Fund

Yesterday I sorted the envelopes on my desk and saw a thick envelope addressed to The Sasha Bella Fund for Family Centred Care. Inside was a letter from a Toronto lawyer I have never met who wrote that an out of country client had to make restitution and the lawyer thought it most appropriate to help us help family centred care at Sickkids. I turned over the letter and there was a generous cheque. Then, amazingly, several hours later another lawyer called me to tell of an emergency. She had to make a donation for client restitution and wanted it to go to Sasha's fund but needed the receipt today. Could I pick it up? Happily I took this unexpected bounty to Laurel Shillingford at the Foundation where I learned that charitable donations as a part of court ordered restitution are so common there is a tick box for them on the Sickkids Foundation receipt. So ... please mention Sasha's fund to your lawyer friends.

Then this morning I bumped into Treasa and got a very quick update about our Sing! Move! Play! child-parent music group. She mentioned that after playing to groups of various sizes in several venues, Child Life has arranged a semi-permanent venue in Oncology. Then her eyes glowed and she told me that last Friday's session was the best session. A little girl in Oncology was crying, uncomfortable and didn't want to be there. By the end of the session, this little girl was laughing and momentarily transformed. Thank you Treasa. Thank you Sickkids. Thank you to the bad guys who have to make good.

Michael Redhill : "We Saw Stars In His Eyes"

"We sat in the brightly coloured atrium of the Hospital for Sick Children and rocked back and forth, weeping in terror, and promised him, from the terrible distance that separated where we sat and where they punctured him, that if he made it through this, he'd have a free pass until he was 18." So recalls Michael Redhill in the aftermath of his first born's spinal tap at three days old. Looking back nine years, "I Saw Stars in his Eyes" subtly explores parenthood, fatherhood and that "dark knowledge" that can emerge from a child's health crisis.

In a beautiful metaphor, his fatherhood grows as a concept alongside his partners belly, he lays out unvarnished parent- staff angst ("One morning, I had to be held back from attacking a nurse who was being too businesslike with him. Maybe I had the right kinds of instincts after all.") and offers a deep meditation on how the act of birth signifies death and how love and grief are one.
"She puked through the whole pregnancy. It was supposed to be "healthy," but I couldn't help seeing it as a response to an existential problem. Having a child is sowing the seeds of your own obsolescence: birth is the fuse that leads to that other thing. You appear, you replace yourself, you die. I had preferred to see myself as outside the swim of the normal process of things. As a younger man I'd imagined an unmarried life, unfettered, an artist without ties. Now I lay abed in the mornings with my pregnant partner as she groaned for crackers and cantaloupe, and I knew I was forever on God's radar. It was good to be found."
After describing surreal moments as his son totters between life and death, Michael moves from humor to "dark knowledge" that, in the normal order of things, those we bear will bury us.
"He's going to be fine, they told us. It was nothing. These things happen. They kept him another night to get the full dose of the antibiotic into him, just in case, and then they sent us home. I filmed us taking him into the house, fully ours at last. But I was so out of it that all I have of the momentous homecoming is a full minute of my mother-in-law's bottom moving up the stairs. She had the baby in her arms. But in the film I can hear him. He's cooing. The last moments before he arrived, when his head was out and only Anne's last pushes were to come, the awareness washed over me that mere instants separated me from the last moment in my life when I wasn't necessary to the first moment when I was. This thought frightened me, as I imagine it should frighten any sensible person. You can love those who are going to leave you – either because they precede you or because they can leave you if they choose to – and you can love in the dark knowledge of this. Your parents will die, your loved ones may suffer a change of mood and move on. But to begin to love someone you know you will leave, because nature must have it so, is a very heavy thing indeed. Here came the boy who would bury me. Whom I would love for the rest of my life, but not for all of his. I was bringing him into future loss. There is nothing more beautiful or dreadful than this. And then someone seemed to ask me, Are you sure? and held him away from me. Yes, I said, I am sure. I'll give my life."
This Dad reminds us that it is in the broken, grieving, scared and trusting heart we find something akin to a secret Sickkids handshake, a deal with whomever we take solace from. Every Sickkids parent knows that terror of loss, leading to those promises in a personal search for salvation.

Michael, thanks for your exploration of life and death and fatherhood and Sickkids: I wish your family the happiest of new years. And in the spirit of your telling, I wish in the most fullness of time that your heavy fear you bore a child who will bury you will come true. And thanks for ending where we begin our blog each day, that it is family-centred care, at its most fundamental, that provides support for the family's love amidst its greatest grief. "I often wish I could go back to our younger selves, paralyzed with fear in the cold atrium of Sick Kids, and reassure them that their son would be making a hell of a mess in the kitchen in 2007, but we wouldn't have heard; we were inconsolable and unreachable. Love kept us whole those days, nothing else."

Read the full article here.

Canadian Patient Safety Week 2008 - "Knowledge is the Best Medicine. Ask. Talk. Listen."

The Canadian Patient Safety Institute celebrates September 25th to October 4rth as their 4rth annual Patient Safety Week.

"Canadian Patient Safety week is an annual event to keep the issue of patient safety at the forefront in Canada. It is designed to raise awareness and increase dialogue about patient safety issues, related programs and projects happening across Canada. First launched in 2005 and held each Fall, Canadian Patient Safety Week is an initiative of the Canadian Patient Safety Institute."

For more information, visit CPSI Patient Safety Week releases or the Canadian Patient Safety Week 2008 webpage.