Patient reported outcomes

Pauline Chen's recent New York Times article titled "Listening to Patients Living With Illness" is a good news story for patient and family centered care which also strikes some odd notes. The article begins by introducing an adult experiencing severe side effects from radiation that he considered to have been understated in earlier discussions; the patient would now definately choose surgery. The problem is that "medical research has long been driven by a single overriding goal — the need to find a cure."

Most published studies are marked by a preponderance of data documenting even minor blips in laboratory values or changes in the size of a spot...

Few studies, however, focus on the patient experience.

The result of all this emphasis on cure has been a nearly embarrassing richness of choice for patients with diabetes, heart disease, H.I.V. infections and even some cancers. The increasingly sophisticated treatment regimens that now make up medicine’s armamentarium have transformed once life-threatening diseases into chronic ones, but in the process have given rise to a group of individuals who are caught in the unenviable position of living with an illness that never quite goes away. No longer forced to make once-in-a-lifetime life-or-death treatment decisions, they instead struggle each day with the side effects of the very treatments that keep them alive.

“To some extent, we’ve conquered death,” said Dr. Albert W. Wu, lead author and a general internist and professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health in Baltimore. “Now we have people living with chronic illnesses, and how they experience quality of life every day has become an important part of how they are doing and whether the treatments are worthwhile.”

To effectively capture the patient perspective, Dr. Wu and his co-authors propose making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection, in some cases requiring the information for reimbursement (emphasis added). For several months now, they have been incorporating data about patient experiences into routine medical practice at Johns Hopkins. Using a dedicated portal called PatientViewpoint.org, patients can, at the suggestion of their physicians, fill out surveys about their energy levels, social functioning, mental health, nausea and pain. The information is then handled like more traditional clinical testing; access is reserved for the patients themselves and their doctors.

Currently, the site is open only to patients diagnosed with breast or prostate cancer, but Dr. Wu and his colleagues hope that eventually all doctors will be able to order patient surveys that measure experiences like levels of pain, physical functioning or depression, proactively identifying results that are high or low, then reviewing those results with patients. And despite initial concerns that patients might feel overburdened by the questionnaires, most have been enthusiastic.

“Patients want to have more conversations with their physicians and other providers about these kinds of issues,” Dr. Wu said. “Sometimes it’s difficult to cover all this information during the medical encounter, and these surveys may be another opportunity to do that.”

Couple thoughts. Overall I love the concept: more patient voice in the data stream will lead to research themes identified that can help more patients. However there is an element of compulsion implied by "in some cases requiring the information for reimbursement" that wouldn't occur in Ontario presumably.

There are also different routes to this end: here the method is "doctors will be able to order patient surveys". What about collaborative narrative medicine (written up here and on BLOOM's excellent interview with Dr. Rita Charon) where staff and patients write their stories to learn each others' perspectives.

It also isn't the case that doctors suddenly woke up to the fact that not all patients are cured, or that all patients depend only on doctors for information. These surveys seem like a medical world catching up to and trying to rein a horse that has bolted the clinic. After centuries of medical centered care and little more than a decade of patient and family centered care, new web portals allows patients to share their own information. The wildly successful PatientsLikeMe portal has 60,000 patients logging their health details and communicating on options. The site's tagline is "Learn from the real-world experiences of other patients like you."

U.S doctors also face a compensation problem. Dr. Robert Martensen in a blog entry titled "Talking and Listening to Patients" suggests conversations (the most prolific procedure of all) is poorly compensated.

“I can spend an hour and a half talking with the patient and the patient’s family when the patient learns they have a life threatening diagnosis. We can spend 2 hours together which is perfectly appropriate – it’s the way to go I think to find out what matters to them, relevant medical history, do a physical exam, etc. In New York State, Medicaid pays $18 dollars for that service. If, on the other hand, I said with the patient, you have this problem we think, it looks like….today we are going to be doing a lot of tests, spend 15 minutes with the patient, maybe do a procedure myself – that procedure would be well compensated. But my time to listen, that is not compensated and yet that makes all the difference in what people experience as they are navigating this very daunting set of circumstances.”

Perhaps surveys will be better compensated too. Back here in Ontario we can also work to ensure medical and nursing and allied professional education teaches the art of listening and talking and being accountable to those conversations. Part of that work is educators inviting parents to talk to students.

Comments on "A Shattered Trust" - "Actions speak louder than words."

BLOOM blog recently published an anonymous article called "A Shattered Trust" by the mom of a young child who is on their 4rth care manager. Please read and share with colleagues. How do professionals remain accountable to all families? Who will go to bat for the family that has been struck by lightning repeatedly? Who ultimately repairs the breach in a parent's belief that some staff do not care?

For almost a year I’ve made over 30 calls and worked with six hospital departments to find a way to better handle my daughter’s g-tube changes. My daughter is petrified of the procedure. Her hips are strapped down but I have to hold her arms while she screams, twists her upper body and turns bright red. The first time it happened I had flashbacks to when I had to restrain her for procedures in the NICU. So I've spent months trying to come up with an alternative. I’ve asked for sedation, but been given conflicting information about whether it's safe. I've asked for a child-life specialist to provide support. I've sat outside the procedure room, listening to my daughter (with my husband) scream inside. I've asked if the ‘comfort kit’ is in the room with them, only to be told it’s sitting behind me in the waiting room. I’ve asked if I can take the kit to the room and been told "No." We’ve left in a g-tube that should be changed every six months for 15 months because we can't find a solution to managing our daughter’s pain and anxiety....I hesitate to ask for help because I’ve become more disillusioned with each failure. Our professionals don't work together to solve problems and give conflicting information. And because actions speak louder than words, increasingly I’m convinced that the bigger problem is that they don't care.

I have heard many stories of care successes and challenges over four years and some of the details are mind-boggling. We can spin off easy suggestions. Shop around for a better, more understanding pediatrician, and get the foundation of care off to a good start. Go to the new coordinated complex care teams designed to help exactly these families. Go to patient reps. Speak to parents who volunteer in the hospital for ideas. We can in theory enlist any number of new supports. I would suspect this family has tried some of these routes as well if they logged 30 contacts with one unit about one proceedure. Yet for many families, care is a minefield, and this seems to particularly occur when the syndrome is not well understood or straddles several disciplines. When a parent feels they are the only true advocate for a child and are scared to bring that complex child into the institution because nothing seems to go right we all need to look long and hard at the miss and then act.

Anesthesia tackles patient safety: do you know where your adverse event protocol is posted?

An Anesthesia Patient Safety Foundation website I stumbled upon shows health professional use of the web to help staff and families with resources including a step by step adverse event protocol. Their 2006 Special Issue: Dealing with Adverse Events confirms poor communication can traumatize a family.

Most adverse events are not caused exclusively by a single individual or due solely to the patient's particular disease processes. The situation that arises is more likely to be one in which there has been an adverse event or a poor outcome that involves multiple caregivers and may or may not involve negligence. Patients and families (as well as the caregivers involved) may experience stress not just around the event or outcome itself, but see it increased by subsequent communications and interactions that are not handled well or do not meet their needs at the point in time.

In the Organized Response to Major Anesthesia Accident Will Help Limit Damage: Update of Adverse Event Protocol Provides Valuable Plan the detailed protocal runs through verification, consultation, communication and shutting down of the OR (by not turning off, cleaning or fixing anything).

Three personal stories shared with the APSF Board of Directors highlight the importance of getting patient safety responses correct as “Incredible Save”, “A Parent’s Nightmare” and “A Question of Competence” offer differing cautionary tales. The many general and specific lessons drawn by event participants is undiminished over 5 years, can be generalized to other disciplines and would be a worthy challenge for any hospital in 2010.

One important item that could immediately and directly help prevent or mitigate patient injuries was again broadcasting a reminder that “Administrative Guidelines for Response to an Adverse Anesthesia Event” have been published and are available on the APSF website: www.apsf.org, “Resource Center,” “Clinical Safety Tools,” then “Adverse Events Protocol.” Another suggestion was the simple idea of surveying patients/families to help determine what type and how much information and communication they really want, both in general and specifically concerning an adverse medical event....A primary specific initiative is to continue to collect (possibly including through a “hotline” to the APSF) and publicize these potent “stories” of patients/families who have experienced an adverse anesthesia event. ... A related initiative will be the use of the great power of the telling of these stories to develop a curriculum in “the patient side of anesthesia patient safety” for distribution to all anesthesiology residency and nurse anesthesia training programs, as well as to medical schools for incorporation into their clinical teaching. Closely tied would be additions to modules used in anesthesia simulator training that add experience in post-event management of both the patient/family and the involved anesthesia provider. This intense role-playing likely would evoke strong emotions and would be videotaped for the debriefing of the participants in the specific simulation and also for potential inclusion in curriculum modules for anesthesia trainees and medical students. Having these modules available on the web for all anesthesia providers through their respective national professional organizations also would have a significant impact because their direct relevance and inherent drama would provoke widespread interest and attention.

One major recurrent theme was the failure of communication with the patient/family at the time of the catastrophic event and thereafter. The overall concept of trying to shift from a “culture of blame” to a “culture of learning” certainly applies. It was agreed that, in the spirit of “the patient’s bill of rights,” there should be an expectation by the patient/family of open communication and full disclosure (even to the point that the surgical/anesthesia consent forms should specify that after any event, prompt full disclosure will be made). The expected concerns about risk management and the potential legal liability implications of apologies and full disclosure were expressed, but reference was then made to the study from the VA system demonstrating a significant reduction in liability costs associated with prompt full disclosure after an event. Related was the favorably-received suggestion that patient care facilities where anesthetics are administered should have an ombudsman or “patient advocate” always immediately available or on call so that this advocate can immediately interpret, facilitate communications, and organize support of all types for the involved patient/family in the event of an anesthesia accident, or any acute medical adverse event for that matter. This tied in to the projected goal that perioperative services should be “high-empathy organizations” as well as high-reliability organizations. The proposal that patient/family representatives be included on the committee for the peer-review analysis after an adverse event provoked significant discussion, but did not yield a consensus. However, the suggestion that the institution and the practice group involved with an anesthesia accident share with the affected patient/family the details of changes made following the event (whether policy, procedure, behavior, equipment, or organizational) intended to prevent any recurrence of that type of accident met with widespread approval.

Promoting thoughtful, compassionate, and open support for anesthesia providers who have been involved in a catastrophic anesthesia accident (even one with an eventual good outcome) is another unanimously accepted proposal resulting from the APSF Board workshop. Clearly the front line and the bulk of this effort should be at the local level, within the institution and immediate group of the involved anesthesia provider(s). Prospective concrete plans that are widely disseminated to all involved should be in place in order to avoid a confusing scramble of disparate resources at the time of an event. Group leaders and facility administrators should immediately activate the pre-planned response to provide support and counseling, as well as specific advice and encouragement about disclosure to the involved anesthesia personnel. Further, it was suggested that the APSF could establish another type of “hotline” to offer situation-specific suggestions to assist and support the personal needs and concerns of anesthesia providers finding themselves under stress following involvement in an adverse event. The more general question of anesthesia providers under so much personal stress as to be dangerously distracted and a safety risk was also broached. Enhanced vigilance and sympathetic support from coworkers, promoted by articles such as this one, was seen as the best immediate strategy.

Cardiac Critical Care Family Initiatives fund's first focus, Communication in CCCU and PICU

Labatt Family Heart Centre has setup a new fund for Cardiac Critical Care Family Initiatives which has already received $45,000 in donations. The first strategic initiative is communication, which we are so happy to hear on this blog. Since orientation of senior staff in April, the unit is preparing rollout of 'Crucial Confrontations' training to a first group of interprofessional staff in both the CCCU and the PICU. According to the company website, this training "teaches a straightforward step-by-step process for identifying and resolving performance gaps, strengthening accountability, eliminating inconsistency and reducing resentment." The skill tools they list to achieve this accountability and evolve execution are:

• Hold anyone accountable—no matter the person's power, position, or temperament.
• Master performance discussions—get positive results and maintain good relations along the way. Stay focused on the real issues and avoid getting distracted.
• Motivate without using power—clearly and concisely explain specific, natural consequences and permanently resolve problems.
• Enable without taking over—creatively help others avoid excuses, stay on track, and resolve performance barriers. Learn to avoid roadblocks to performance.
• Move to action—agree on a plan, follow up and engage in good reporting practices, and manage new expectations.

These would appear to be necessary interpersonal skills to achieve 'smooth' team dynamics. Perhaps we just expect nurses, doctors and all professionals to have just mastered them by the time they are on the floor yet so far the time devoted to team and family communication training in medical training is too little or too late. Such skills are learned (or not) on the job, hence my excitement to see how this particular training pans out for staff and families. It would also be great to see this staff training on teamwork find ways to appropriately include parents; the parent's point of view from first hand experience differs from that of staff in interesting and useful ways.  

Palliative care should be a phased conversation about a supportive and holistic treatment with benefits

Maria Rugg welcomed a small group of health care staff and parents to the Toronto Central Palliative Care Network events to celebrate National Hospice and Palliative Care Week. The expert panel was asked to reflect when in the trajectory of a disease should 1) the child and 2) the parents and family be made aware that the child may die and palliative care be introduced. While palliative care guidelines suggest palliative care be introduced when the family is ready or depending on the type of disease, Maria highlighted a 2000 JAMA study, Understanding of Prognosis Among Parents of Children Who Died of Cancer: Impact on Treatment Goals and Integration of Palliative Care, which found on average that doctors knew twice as many days prior to parents as to the likelihood of death. The study concludes: "Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care."

Maria then introduced the SickKids panel of experts. The notes below were hand written and attempt to capture some of the highlights. Some comments relate to two case studies, a 3 year old boy with cancer and what a young child can understand about a life threatening disease and an 11 year old girl with CF facing the choice of a lung transplant whose parents do not want her to have a choice to decline the treatment. The notes below mostly relate to the more general question of when and how to talk about palliative care.

Christine Harrison, Director of SickKids Bioethics Department, emphasized that when we are talking about truth telling we need to emphasize the importance and fragility of the trust between family and health professional and also the complexity of communication, including kind ways of delivering the diagnosis. The point is to allow for thoughtful decisions and for patients and parents to have control over the procedures. Some words are conversation stoppers, like cancer, death and palliative care. Think of a disclosure of a diagnosis as a staged process, not one event. Palliative care is a potential benefit, though not necessarily at the beginning. We understand that the family understanding of palliative care if often the same as end of life care and we can work to move this understanding. Be careful in that the decision is rightly theirs. Patients who feel they have had information withheld from them may have difficulty trusting.   

Oncologist Dr Eric Bouffet: I think the earlier you share the information the better. It can be overwhelming all coming at one time. When you say there is a 5% rate of success the parents often only remember the 5%. With neuroblastoma I explain there may be a 10-15% rate of success however you will hijack most of the child's remaining life with the treatment. In some cases it is important to clarify the options very early and there are times when I have to bypass a parent's desire to hide the reality [from their child]. He said he would not tell the 3 year old child that he might die but would be very pushy to have the 11 year old girl, already included in prior treatment decisions, have a say in the acceptance of a transplant option.

Pediatric palliative care physician Dr Christine Harrison: If this was truly a challenge panel then I would say one must always tell parents when this is an illness that they are likely to die from. It is our obligation that children and parents know as much as they can understand. When you say 'they may die' then the conversation should happen early but not necessarily at the first visit. At a first visit, there is only so much families take in. One of the reasons palliative care is difficult to hear is because health care professionals find it difficult to say. Parents listen carefully to what we say and to what we dont say. If we say palliative care is an option when nothing else is working then we put a very negative value on palliative care. There is a world of difference between 'may die' and 'will die'. Also, we dont 'deliver' news, we deliver newspapers. We share bad news. Think about the words used, what you need to find out. I prepare to ensure they understand and have imparted to me what they need. It should be planned for as soon as it enters the mind of the health care professional. One child heard that we cannot make the cancer better and the child thought she could live with cancer and go to high school and university, marry and have children. She didnt want to give up but she also didnt understand. We should avoid doctors saying 'We could do everything' - families don't know the 'everything' we can do. Rather than the word "owie" to describe cancer, this is an opportunity to teach what cancer is to the youngest patients and his circle of firends. We can ask what does Jeremy know about where a dead cat is or his grandma. Children of 3 can understand a lot. It is key that children know they are not alone and that parents and doctors will do their best to help. Parents wish to protect children from horrible things. If we cannot protect the children from death then we must prepare them.

Parent, bereaved parent and frequent palliative care speaker Valerie Macdonald began with her own experience: When do we tell parents there child may die? Possibly not at the beginning when we hear there is an 80% chance of a cure.  There isn't a right time. Disclosure meetings were very busy and it was hard for me to absorb information. It is important to check what parents understand. To me, the words 'Phase One Trial' means to the doctors that the child is likely to die. What is often glossed over is what palliative care is. Palliative care is a viable treatment option. Palliative care is supportive therapy. Palliative care is a holistic approach to improving quality of life relieving symptoms and helping the child and the family with the process of dying. I believe there are some treatments that are worse than dying. Palliative care is a supportive treatment that lets the child develop to the best of their abilities in the time they have remaining. 

As participants reflected about the cases and choice of timing and inclusion of young children some very clear points about the importance of the palliative care discussion, barriers caused by staff themselves, and the need for parents to be told over time about the benefits that palliative care offer.

For me a distinction between 'delivery' versus 'sharing' over time a life-threatening diagnosis was important. Beyond the issue of staff who do not speak about palliative care at all with their patients, or who 'wait' until way too late to start to talk about it, there is the issue of a quick delivery that parents will not take in, or may instinctively recoil from, that does not allow time and trust to develop that allows families to value palliative care or palliative care workers.

I wish to thank the panelists for their thoughtful contributions and also thank Adam Starkman of SickKids Foundation for coming to learn about palliative care from a staff and parent point of view.

Adam reflected that there are many examples of family-centred care that he talks to funders about, such as the playroom off the Atrium where siblings can hang out and play and do homework, and the panel showed him that discussions between staff and families to explore palliative care, separately from end of life care, exemplifies family-centred care.

CCCU start Vital Smart family and staff communication training

I am very happy to hear that Dr Stephen Schwartz, Head of the Division of Cardiac Critical Care, Karen Kinnear, Director of Child Health Services at Labatt Family Heart Centre and Cecilia Hyslop, CCCU Advanced Practise Nurses educator, travelled last weekend to begin the Vital Smart communication training which the Sasha Bella Fund is helping to fund along with other family funds like Wyatt's Warriors. The training focuses on staff learning how to turn confrontation with parents into staff-family partnership that reestablishes trust and accountability. Vital Smart also works on staff-staff communication following publication of the study 'Silence Kills' which discovered the need for better staff peer support as "All too often, "well-intentioned people in healthcare institutions choose not to speak up when they’re concerned with behavior, decisions, or actions of a colleague" and fewer than 10 percent of physicians, nurses and other clinical staff directly confront their colleagues about their concerns. This topic raises the issue of staff peer support as a core mechanism for patient safety and staff communication with family about adverse events.

CCCU adopts Vital Smarts communication training

SickKids CCCU have started a new communication program based on Vital Smarts (Health Care) training for Crucial Conversations and Crucial Confrontations, started from a study aiming to "create cultures of safety" in partnership with the American Association of Critical Care Nurses and leading to their their joint publication, "Silence Kills: The Seven Crucial Conversations for Heathcare".

- 84% of doctors have seen co-workers taking shortcuts that could be dangerous to patients

- 88% of doctors work with co-workers who show poor clinical judgement

-fewer than 10% of physicians, nurses and other clinical staff directly confront their colleagues about their concerns

By providing your info you can download an occupational questionaire that identifies key team and communication barriers.

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."

Parents need clearer explanation of options

The scale of the IPP challenge is illustrated with great synchronicity by a concise review of research on mom and staff communication in three NICUs in mid-Atlantic United States.

"Parent-doctor discussions about whether to maintain or withdraw life support from terminally ill or severely premature newborns are so plagued by miscommunication and misunderstanding that they might as well be in different languages" begins the review of the study which interviewed 26 mothers of babies at three mid-Atlantic NICUs.

The study found "what mothers said they were told by doctors was often at odds with what physicians recorded in the medical chart with respect to options offered and accepted" and "few mothers recalled discussing the full range of options, from aggressive resuscitation to palliative care through the end of life".

"We found that the parents of gravely ill newborns, who are understandably overwhelmed are quite confused by the often technical and vague 'doctor speak'," says lead researcher Renee Boss, M.D., a neonatologist at Hopkins Children's. "We, as physicians and caregivers, really need to come up with a clearer way of talking with parents during this incredibly hard time."

The study found 'most' moms prefer to make decisions together with their doctors, not alone, and mistrusted physicians who seemed detached or 'by the book' and felt deeper trust of "physicians who expressed emotion, regardless of the prognosis they had for the infant". Obstetrics and neonatology training should help staff be "attentive to emotion and expressing empathy when delivering bad news". The study calls for organizations like the American Academy of Pediatrics to formulate new guidelines helping physicians to discuss "life-sustaining options" with parents.

Johns Hopkins Medical Institutions (2008, September 17). Parents Of Dying Newborns Need Clearer Explanation Of Options. ScienceDaily. Retrieved September 18, 2008, from http://www.sciencedaily.com­ /releases/2008/09/080915174550.htm

The concept of "irresolvability" helps explain the label "difficult parents" and staff-parent communication breakdown

Karen Legrow, Critical Care Clinical Nurse Specialist, asked us to share Sasha's story to around 120 Sickkids staff engaged at the 'Principles and Practices of Collaborative Communication' day long education workshop organized by Karen and Pam Hubley, Associate Chief of Nursing, and sponsored by the Supporting and Strengthening Families Best Guidline Working Group.

The agenda noted: Collaborative care is a Sickkids priority. Evidence shows that it contributes to improved teamwork and health outcomes for children and families.

Karen supported me speaking about any aspects of our communication with individual staff or observations on general communication with teams and asked only that I identify only the role of the staff member and not their name. She also asks all participants to come to hear the prior presentation to increase the sharing of information and perhaps add specific continuity to the education process.

The first request lead me to think quite a bit about parents acting in a professional manner with staff (staff are bound by principles of patient confidentiality and professionalism that parents are perhaps not aware of). I am very thankful for the second request as this lead me to hear a presentation from Dr Tara Kennedy, at the Stan Cassidy Centre for Rehabilitation, that has significantly helped contextualize our communication issues.

Dr Kennedy's presentation was titled "He's bugging the heck out of me": The 'difficult patient' in pediatrics and reviewed a study of about 40 care situations where 7 were defined as presenting examples where staff considered the parents 'difficult'. She explained the method of observation and then provided a case study that highlighted the specific challenge posed to team-family communication by a protracted period where a specific diagnosis or cause could not be confirmed.

The study presents this lack of confirmation as introducing a status and period of "irresolvability". Five of the seven families identified by staff as difficult experienced this period of irresolvability.

As she was speaking a little lightbulb went off in my head. After a period of deep trust in the care and teams over 18 months, we experienced great distrust and frustration communicating with staff in the first two weeks of ICU when Sasha was deteriorating and we could not pin down the cause among the several complications she was facing. Every day our requests for information accelerated until it reached a point of conflict with a senior staff. This period was one of stress, fatigue, distrust and vigilance toward ICU staff.

We have always understood that the primary cause of our stress was Sasha's deteriorating health however the concept of "irresolvability" adds an important dimension. There were times when we wondered why staff were waiting to intervene and then wondered if we were being too 'pushy'. Admittedly there were moments when we also felt terrible about how many interventions Sasha was subjected to and the feeling, perhaps part and parcel of a time of "irresolvability", that Sasha's care felt like an ongoing experiment.

The breakdown of our earlier comfort and trust can be attributed not only to Sasha's deteriorating health but also to our inability to pinpoint the cause of the surprising downward cycle. The lesson for me is that doctors can identify a period of "irresolvabilty" as particularly challenging to families and staff and clearly explain to families what the plan is so that families do not interpret a necessary "wait and see" approach as avoidance based on their past actions. They can also verbalize that this is one of the most difficult times in a medical care program and that feelings of frustration, anger and grief are normal responses. This will allow everyone to focus on the medical problem and not the parent communication style.

A corollory is that for some parents the feeling of "irresolvability" may not end upon release from the ICU or eventually from that particular hospital visit. Parents of children with complex care needs often look ahead to an uncertain future and feelings of guilt, anger, fear and grief can surface repeatedly when new challenges crop up, when treatments do not seem to help or when the child faces another major procedure. Parents welcome schedules and the building of some certainty about their children's future but in some cases staff can honestly only promise to do their best at each step and communicate as the family wishes without knowing what the future holds or be able to definatively help parents end the feeling of "irresolvability". In such cases, where parents and children need to live with the reality of a long term uncertainly, the need for effective staff interprofessionalism and partnership with parents based on open, timely, empathetic and empowering communication is even greater.