Where does the doctor place the computer?

Pauline Chen's "An Unforeseen Complication of Electronic Medical Records"
is a timely focus on the computer's not yet comfortable place in the patient-doctor relationship.

...that afternoon as I settled in to see my first clinic patient, I realized I had no idea where to sit. The new computer was perched atop a desk in one corner of the room; the patient sat on the exam table on the other side of the room. In order to use the computer, I had to turn my back to the patient as I spoke to him. I tried to compensate by sitting on a rolling stool but soon found myself spending more time spinning and wheeling back and forth between patient and computer than I did sitting still and listening. And when my patient did talk, his story came only in spurts because every time I turned my back to him to type, the room fell silent.

My vision of an interaction marked by the seamless flow of conversation and capture of information vanished. Instead, I was spinning my wheels. Literally.

Yes, it gets better. Read the full article here.

Chen's article is based on the release of "Electronic Medical Records and Communication with Patients and Other Clinicians: Are We Talking Less?", a study based on how EMR's effect clinician's interpersonal communication in 26 practises. The study is a very worthwhile read, here is a summary graphic that you can click on to enlarge.

National Hospice Palliative Care Week - events at SickKids

Click on the image to enlarge

May 4-7 is National Hospice Palliative Care Week and The SickKids Palliative Care and Bereavement Service will host a city wide Grand Rounds on May 4 from 9-10 at Holywood Theatre.

The session will be a panel speaking to the question: Paediatric Hospice Palliative Care, When is the right time to introduce the idea? Panelists will introduce their position based on their clinical expertise and personal reflections, respond to a case study or series of questions and then take audience questions.

Rounds will be followed by presentation of the Interprofessional Practice Pediatric Palliative Care Award supported by The Sasha Bella Fund For Family Centred Care.

Clips of the documentary "A Lion in the House" will be played in the Hollywood Theatre from 1pm to 3 p.m. The documentary looks at the journey of five children as they battle cancer.

Trac-PG Spring 2010 News

The Spring 2010 newsletter of The Team for Research with Adolescents and Children in Palliation and Grief is packed with news and I was so happy to see family opportunities for research, the family galley and a big advertisement for Camp Erin and a family fundraiser. My how this wonderful palliative network newsletter has grown in the last three years!

You can click on one of the four pages below or download and share the whole Trac-PG spring 2010 update.

So happy to see my little peach on the second page review of the website and Family Corner.

It is exciting to see staff calling out for partnership with parents who have experienced the dying and death and bereavement of their child.

Teasing and bulllying workshop for 6-12 year olds at The Hospital for Sick Children

How To Deal With Teasing and Bullying
Kids 4 Kids Workshop
Featuring: Scott Graham
Sponsored By: The Women’s Auxiliary, Sick Kids
Date: Saturday April 24th, 2010
Cost: $5

The Kids 4 Kids Leadership Program is designed for all children between the ages of 6 and 12. The goal of Kids 4 Kids is to teach children how to handle negative situations in positive ways so they can help themselves and others.

The Kids 4 Kids Leadership Workshop is fun, motivational, and informative. Children learn how to deal with teasing, bullying, anger management, peer pressure, and friendships through cooperative games, role playing, singing, and storytelling. The instructor captivates the children’s attention and motivates them to pursue their personal best.

The workshop will be held from 10 am to 3 pm in the Bear Theatre 4th Floor, Black Wing (take the elevators near Shopper’s) at The Hospital for Sick Children.

There is a $5 charge for this event, and lunch is provided for the children.

If you have questions or would like to register your child for this event, please call Miriam Granger at (416)813-6805.

Please register early as space is limited!

Ruth Hartanto 'Our life with – and without – our daughter'

Beautiful article by a mom about the death of her 13 year old daughter Sydney. What strength, what compassion, what clarity...

Having to say goodbye to our daughter and cuddling in bed with her as she slipped away was the most unnatural, surreal experience. Yet, in another way it was normal and natural. We knew this time would come at some point; our life with her prepared us for it.

For almost 13 years, Sydney helped me find the strength I did not know I had, pushing me to do everything I could to make sure she had the best quality of life possible. I am still blown away by the amazing calmness I felt when my husband and I looked at each other, knowing that the time had come. There was no arguing, no second-guessing. We did everything according to Sydney, and this was going to be same.

Read all of Ruth Hartanto's moving article in the Globe: "Life with - and without - my daughter"

As one commentator put it well, "there is something magical about the power of love" in the most difficult circumstances.

Dark chocolate reduces portal hypertension

New research presented at the International Liver CongressTM 2010, the Annual Meeting of the European Association for the Study of Liver in Vienna, Austria, suggests dark chocolate can assist with cirrhosis and portal hypertension:

According to the Spanish research, eating dark chocolate reduces damage to the blood vessels of cirrhotic patients and also lowers blood pressure in the liver. Dark chocolate contains potent anti-oxidants which reduce the post-prandial (after-meal) blood pressure in the liver (or portal hypertension) associated with damaged liver blood vessels (endothelial dysfunction). The data also showed that eating dark chocolate may exert additional beneficial effects throughout the whole body. In comparison, white chocolate, which contains no beneficial 'phytochemicals', did not result in the same effects.

Professor Mark Thursz, MD FRCP, Vice Secretary of EASL and Professor of Hepatology, at Imperial College London said: "As well as advanced technologies and high science, it is important to explore the potential of alternative sources which can contribute to the overall wellbeing of a patient. This study shows a clear association between eating dark chocolate and portal hypertension and demonstrates the potential importance of improvements in the management of cirrhotic patients, to minimise the onset and impact of end stage liver disease and its associated mortality risks".

Read the full article on dark chocolate helping liver decease.

2010 Palliative Research symposium September 29, 2010 at SickKids

Hold That Date poster for 2010 TRAC-PG Palliative Research Symposium at Sickkids

Professor Myra Bluebond-Langner has become the UK’s first chair of paediatric palliative care at the UCL Institute of Child Health and Great Ormond Street Hospital. Professor Bluebond-Langner said:

“We are at a critical juncture in the development of palliative care for children and young people. As the field continues to advance we need to increase both the evidence base and the capacity of the current workforce to carry on the research and clinical work necessary to deliver the highest standard of care to these children and their families.UCL"

2010 Sasha Bella Award for excellence in family-centred care meets in two weeks

On the morning of April 21, the Sasha Bella Award selection committee meets to determine winners of the 2009 Sasha Bella Fund Award for Excellence in Family-Centred Care at Labatt Family Heart Centre. While we also fund an Interprofessional practise team award, this is the only award that bears Sasha's name and is very close to our heart. This is without doubt one of the most exciting couple hours in the fund's calendar year as we reconnect with outstanding members of the team and catch up on family centred initiatives. Each year the committee includes several staff who directly cared for Sash.

In this fourth year we have made two extensions to the award after consultation with the Labatt Family Heart Centre. First, in addition to two nurse awards, we have added a third award for an allied professional, for example, respiratory therapists, rehab specialists, nutritianists, social workers and palliative care staff. Second, we are asking for the first time that recipients write a letter to the hospital and fund that reflects on their family-centred care practise within 6 months of receiving the award.

I would like to thank the staff who give of their valuable time, Cecilia Hyslop who has stewarded this award for 4 years and Dr Stephen Schwartz, Head of Critical Care Medicine, who will be attending. It is also our hope that with Dr Schwartz and Dr Jennifer Russell present that we can talk about adding a fourth award for a medical staff.

Read the 2010 Sasha Bella Award for Excellence in 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.

Accessible visual care maps help families and medical teams navigate

Care maps or care pathways have a specific connotation in medicine as a best practise series of proceedures related to specific interventions*. They are typically a numbered list. In contrast, the detailed, organized and accessible schematic above was created by a mom to capture the array of worlds in the one child and parent's universe. This strikingly informative map appears on p18 of the presentation by What is essential is invisible to the eye: Families partnering with their pediatricians by Robins and Lewis.

Before clicking to enlarge, lets see what is most visible. There are seven distinct circles of care around this child and exactly 30 orbiting services and teams. Just try and imagine that. How many teams do you interact with intimately in life and work? And then a child arrives that expands that world two-fold or more. Around half of the worlds in this diagram are hospital and rehab hospital clinics and services and the other half are family, school and community based.

Families like to speculate, it is a mechanism for hope. Doctors I think its fair to say, are uncomfortable about speculating on future possibilities but sometimes are tempted to talk more about good outcomes than bad. It is one of the most complicated balances. More on the fun side, lets speculate about positioning and colors and try imagine this families particular world, and in important ways imagine what thousands of families in Canada experience. The family is blood red and roots the feet. The pediatrician is closest of medical supports at the head linking paediatric hospital and rehabilitation hospital in blue and is only one of two of the seven circles with no sub-orbitals. Kids First family network is very bright  while provincial FSCD funding is the small black circle at waist level that is small enough to miss but an important band of government supports.

We all make lists and diagrams to 'figure things out'. Why not create a template in powerpoint for parents and staff to partner in navigation. Parents with powerpoint can update themselves, those without can update and printout at clinic. Staff will see things in the community and likely even in their own institution that were invisible. Parents will get a quick jump on their core supports, see them clearly laid out to visualize further relationships or even missed supports, and then bring this personalized map to their staff partnership - parents also get a handy sheet to wave at the sweet question 'So who is helping you?'. This type of map is quite detailed and if you are approaching building this after years of care, consider a less precise but more fun word cloud tool to throw all the big words on a board and then play with the visual presentation. And of course it needs to be added that templates for family care maps augment and do not replace other intimate medical staff communication, like the doodle of the portal vein on the bedsheet, or the wiggly lines in a box connoting the intervention-palliation continuum, or the back to the patient flourish of green ink on white-board.

* "Clinical pathways, also known as care pathways, critical pathways, integrated care pathways, or care maps, are one of the main tools used to manage the quality in healthcare concerning the standardization of care processes. It has been proven that their implementation reduces the variability in clinical practice and improves outcomes. Clinical pathways promote organized and efficient patient care based on the evidence based practice. Clinical pathways optimize outcomes in the acute care and homecare settings."

Sue Robbins and Dr Mel Lewis: 'Families partnering with their Paediatricians'

What is essential is invisible to the eye: Families partnering with their pediatricians is a partnership by Dr Mel Lewis of Stollery and the incredibly engaged parent Sue Robbins. Mel Lewis describes herself as Medical Director of Edmonton Down Syndrome Medical Clinic at Stollery, Director of Undergraduate Medical Education, general paediatrician and hockey mom. Sue Robins describes herself as a mom of three, Coordinator of the Visiting Parents Program, Chair of Canadian Family Advisory Network, Freelance writer and photographer and participant in Stollery Family Centred Care Network working on writing and communications. This highly personalized collaboration by parent and doctor exemplifies partnership and is an excellent and contrasting companion to Dr Lindsey Craw's 'Neonatology From A Parent's Perspective' (895 Kb).

Robins and Lewis identify barriers to parents being effective partners as:

- Loss of control
- Fear
- Information overload
- Lack of confidence
- Lack of responsibility
- Feeling hopeless

A series of slides from pp27-39 offer guidance on What families need...

1. Compassionate disclosure of diagnosis (The trajectory of our entire lives is changed with the delivery of your words)
2. Celebration of the birth of our baby
3. Connection with other families
4. Positive clinic experience (There are no traffic jams along the extra mile.
~ Roger Staubach)
5. Human Touch: Time (An unhurried sense of time is in itself a wealth.—Bonnie Friedman), Language (He’s not your buddy. And I’m not your Mom.), Alleviating Fear (Knowing what’s going to happen next helps alleviate fear and anxiety)
6. Build confidence in our abilities (Ordinary parents doing extraordinary parenting; Compliment us if we’ve done a good job; What is routine for you is not routine for us)
7. Hope and Believe (If there were not hope, the heart would break. ~ Ancrene Wisse)

They use K.I.D.S as a mnemonic for staff engagement of a patient:

Here is this doctor and parent tip list for building partnership:

- Respect for the teaching families can provide you and your students
- Be up to date on medical guidelines
- Why are we asking specific questions? Help families make informed decisions about surgery and treatments
- Coordinate one message from all the health professionals.
- It is ok to say ‘I don’t know’

Dr Lindsey Craw, 'Neonatology From a Parent's Perspective'

Neonatology From A Parent's Perspective (895 Kb) by Dr Lindsay Craw is a focused summary of the research themes identified on parent perspectives and needs as they care for a sick child (baby in this case). Read to the end for 9 principles of family-centred care, as good a bullet point definition as I have seen.

Dr Craw explains she seeks 1. To understand the parental perspective of having an infant in the NICU 2. To consider how the experience may be unique for fathers and adolescent parents 3. To appreciate the financial burden families face 4. To look at end-of-life decisions from a parent’s perspective and 5.Suggestions for improving the parental experience.

She identifies sources of parent stress as Personal and family stressors, Prenatal and perinatal experience, Infant illness and appearance, Concern about outcome, Feelings of guilt, Sadness over a lost dream, Loss/alteration of parental role, Not getting to “know” the baby, Separation from their child, Alienation/sense of not belonging/loneliness, Being unprepared, Ineffective communication with healthcare providers.

Themes identified in the literature on parent's needs include:

1. “A need for accurate information and inclusion in the infant’s care
and decision making” - Parental distress was associated with receiving inaccurate and/or incomplete information - Contradictory information lead to confusion, decreased trust in the healthcare team and increased parental anxiety

2. “A need to be vigilant and watch over and protect the infant” - Wanted to oversee the infant’s care but as trust increased this watchfulness relaxed

3. “A need for contact with the infant”

4. “A need to be positively perceived by the nursery staff” - Feared being labelled as “difficult” and felt the need to conform to the “good mother” role

5. “A need for individualized care”

6. “A need for a therapeutic relationship with the nursing staff” – Mothers saw nurses as “gatekeepers” between themselves and their infants – Parents identified nurses as their primary source of information

Dr Craw also reviews literature on fathers, summarizing Johnson (2008) that:

• Most studies have looked at the experience of mothers
• Mothers need a sense of responsibility and control in caring for their infant
• Fathers need confidence in the health care team
• Loss of control was a major obstacle for some fathers
• Fathers have a sense of responsibility to return to work (coping mechanism)
• Without support and encouraging participation, fathers can become distanced from the family
• Fathers should be involved in hands-on care
•Ward (2001): Fathers ranked assurance and information needs as less important
than mothers but there were no differences in terms of comfort and proximity needs

A summary of Boss et al (2009)interviewed mothers under 21 to assess their understanding of the diagnoses, treatment and illness severity and who they spoke to from the medical team.

Results: 60% showed poor knowledge of either their infant’s illness severity, treatment or diagnosis – Greatest misunderstandings involved estimates of
illness severity – 46% of neonates were in “critical condition” but only
17% of mothers thought their infant was “very sick” – Adolescents who reported speaking with a physician were less likely to accurately assess the severity of
their infant’s illness (48 vs. 82% p=0.03) – Maternal age and educational level were NOT associated with improved knowledge of illness severity – Teens reported reluctance to ask health care providers to clarify technical language

Dr Craw also summarizes end-of-life decision making findings from Brinchmann et al. (2002):
• Wanted to be part of the decision making but not to make the final decision
• They felt they lacked the necessary medical knowledge and experience
• Doctors carry the responsibility of making the final decision
• Should be well-informed, listened to and if possible, told at a time when they are
ready to receive the information
• Wanted to be considered as individuals
• Parents have to live with the consequences of the decision
• Main concern was how doctors communicated with them and how the information
was presented

What is important to parents, in a nutshell?

• Continuity of care
• Individualized care
• Consistent and effective communication
• Relationships with healthcare providers
• Parental involvement

• In a study by Reid et al. (2007): – 36% of parents could not identify a staff
person whom they felt they could talk to - 25% felt they could not ask too many
questions – 29% identified a lack of privacy which stopped them from having discussions with the staff

Weiss (2009) reviewed a targeted intervention that improved the satisfaction of parents with provider communication. The intervention included (1) Education module for medical providers, (2) Contact card for parents with medical providers names, job descriptions and contact information, (3) Poster of faces, names and titles of medical providers on display at the entrance.

Dr Craw defines Family Centered Care as “Acknowledging he central role that the family plays in a child’s life and incorporating practices, policies and programs that support the family”. 9 principles of family-centred care include:

1. Recognizing the family as a constant in the child’s life
2. Facilitating parent-professional collaboration
3. Honouring racial, ethnic, cultural and socioeconomic diversity
4. Sharing complete and unbiased information on a continuous basis
5. Responding to the child and family developmental needs as part of healthcare practices
6. Encouraging and facilitating family to family support and networks
7. Adopting policies and practices that provide families with emotional and financial support
8. Designing healthcare that is flexible, culturally competent, and responsive to families
9. Recognizing family strengths and individuality and respecting different methods of coping