The provision of comprehensive health services to patients by multiple health caregivers who work collaboratively to deliver quality of care within and across settings. Ministry of Health & Long-terms Care, Province of Ontario, 2007
IPP in a paediatric setting refers to the continuous interaction of two or more professions, organized into a common effort to solve or explore common issueswith the best possible participation of the child and family. Designed to promote active participation of each profession in patient-care planning and delivery while remaining focused on child and family-centred goals and values. Ministry of Health & Long-term Care, Province of Ontario, 2007
Occasions when two or more professions learn with, from and about each other to improve collaboration and the quality of care. Centre for the Advancement of Interprofessional Education, 1997
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".
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
"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
Learning from the life and death of Annie Farlow
Parents of children with severe medical conditions face many fears about their children's quality of life and long term prospects and open communication with a skilled and empathetic medical team is an anchor support. Parents of children with severe cognitive deficits may face another fear, however, that hospital care priorities or individual staff prejudices (however benevalently framed) will impact their child without being transparent in the care discussion.
Annie Farlow arrived in this world to a loving family, aware of and prepared for the cognitive and developmental impacts of her condition. Barbara and Tim Farlow's journey to understand the circumstances of Annie's death in an unnamed Toronto pediatric ICU challenge us to look at one of the most disturbing fears of parents of seriously challenged children:
You can read the full article by Helen Henderson and view the family website that remembers Annie and reminds us all that the ultimate test of patient and family centred care is its application to the most vulnerable of our developmentally challenged children.
Annie Farlow arrived in this world to a loving family, aware of and prepared for the cognitive and developmental impacts of her condition. Barbara and Tim Farlow's journey to understand the circumstances of Annie's death in an unnamed Toronto pediatric ICU challenge us to look at one of the most disturbing fears of parents of seriously challenged children:
"Do some doctors play God with disabled kids? Are treatable but possibly fatal problems, such as digestive obstructions or respiratory difficulties, sometimes left to take their course when a child has a condition like cerebral palsy or Down syndrome or, in Annie's case, Trisomy 13? Do some medical professionals mask their own quality-of-life opinions by giving parents only the worst-case scenario, leading to what Farlow calls "misinformed consent"? What can families do to change things?... As a member of the Canadian Patient Safety Institute and Patients for Patient Safety Canada, part of the World Health Organization's Alliance for Patient Safety, Farlow says she wants to bring more accountability and respect for life to the system. This is not about advocating prolonging life at any cost, she emphasizes. It's about patient-centred care in which the family is included in an informed decision-making process. Some families may feel comfortable knowing they will be giving birth to a child with disabilities; others may not, she says. Either way, their wishes should be respected through a process that is transparent and accountable."
You can read the full article by Helen Henderson and view the family website that remembers Annie and reminds us all that the ultimate test of patient and family centred care is its application to the most vulnerable of our developmentally challenged children.
SickKids Family Knowledge Group (SKFKG)
I was intrigued by this group, described as "a community of parents, caregivers, grandparents and the public at large who want to help The Hospital for Sick Children (SickKids) develop better products and services that are truly useful and effective.", so I subscribed to the newsletter and here is the first update after the summer hiatus [links are mine].
Other Sickkids books can be found at the 5 Fifty 5 Shop run by the women's auxiliary and at shopsickkids.com
Hi Everyone,To get SKGKG's updates you can sign up here or read more about this Sickkids knowledge partnership with families (you know I just love how that sounds) setup by Sickkids Corporate Ventures.
I have some exciting updates to pass along to you.
Firstly, the second edition of The Hospital for Sick Children's Better Baby Food book authored by Daina Kalnins and Joanne Saab has hit the shelves at Chapters and a few other local stores (as well as online). Very exciting!! Thanks so much to all of you who tested the recipes and gave valuable feedback.
Secondly, SickKids Family Knowledge Group has secured a booth at the Today's Parent Baby & Toddler Show, November 7-9, 2008, Metro Toronto Convention Centre. If you happen to be going please drop by and say hi, or if you know of someone that will be attending, let them know to keep their eye out for us. We will be there to recruit more parents and caregivers for the SickKids Family Knowledge Group as we are anticipating more projects for 2009!
Enjoy the weekend,
Erika Schippel
Other Sickkids books can be found at the 5 Fifty 5 Shop run by the women's auxiliary and at shopsickkids.com
Story telling in the NICU
It is the smallest acts of communication that can sensitize us to the power and challenges of family centred care, as Diane Flacks learns from Toronto story teller Dan Yashinsky:
Dan is American born but has become Toronto's storyteller. He is a member of the Writers Union of Canada, is a recipient of the Jane Jacobs Prize for Ideas That Matter and, as his biography suggests, Talking You In is the most recent addition to his program. The performance piece is a collaboration between Dan and accomplished musician Brian Katz and has toured medical audiences in Newfoundland, Ottawa and Wales, where one listener remembers: "I left with a feeling of hope and a conviction of the power of love and the healing potential of stories.... Your piece demonstrates the importance of communicating with sick and premature babies and letting them know how much they are wanted and loved. "
Dan and Brian presented Talking You In to a group of donors and NICU staff on Sunday August 10m resulting in a dynamic discussion about family involvement with staff. Among the staff was the current clinical director, along with Dr Max Perlman, the clinical director while Jacob was in NICU and his wife Nitza Perlman, PHD who has conducted research on the information needs of parents of neonates. The performance was arranged by Lisa Charendoff of Sickkids Foundation Public Affairs.
'When asked why he has written Talking You In now, Yashinsky's dark eyes look incredibly sad behind his glasses. He says that, for 16 years, he has been haunted by how much of what he and his wife did was by instinct, without medical sanction or encouragement. "We have to re-educate ourselves as to how not to be passive and helpless in the medical environment. How do you reclaim the human dimension in the scientific and medical world? Science has gone beyond our moral understanding of it. "At the very least, every NICU should give parents nursery rhymes to read to their kids."'Read Diane's powerful Story Telling in the Neonatal unit where Dan also discloses how this professional story teller could not do for his father what he did for his baby Jacob and a very sad realization made by German ICU nurses.
Dan is American born but has become Toronto's storyteller. He is a member of the Writers Union of Canada, is a recipient of the Jane Jacobs Prize for Ideas That Matter and, as his biography suggests, Talking You In is the most recent addition to his program. The performance piece is a collaboration between Dan and accomplished musician Brian Katz and has toured medical audiences in Newfoundland, Ottawa and Wales, where one listener remembers: "I left with a feeling of hope and a conviction of the power of love and the healing potential of stories.... Your piece demonstrates the importance of communicating with sick and premature babies and letting them know how much they are wanted and loved. "
Dan and Brian presented Talking You In to a group of donors and NICU staff on Sunday August 10m resulting in a dynamic discussion about family involvement with staff. Among the staff was the current clinical director, along with Dr Max Perlman, the clinical director while Jacob was in NICU and his wife Nitza Perlman, PHD who has conducted research on the information needs of parents of neonates. The performance was arranged by Lisa Charendoff of Sickkids Foundation Public Affairs.
Melanie's Transition Group - Helping Bereaved Siblings
In honor of their daughter Melanie, Mitch and Dina Blum have setup a new program at Sickkids to help bereaved siblings.
Dad provided this picture of Melanie (left) with her older sister Hailey on "The day we were told she is palliative. I took her home and we went for a swing."
Here is the logo of the Melanie's Transition Group:
The objective of the Melanie's Transition Group is to develop an evidence-based group intervention that will reduce distress and isolation in bereaved siblings, foster coping with grief and daily life after loss, and improve their quality of life with the ultimate goal to contribute to the improvement of quality of life for bereaved siblings and their families. The Blum family was assisted by Dr Maru Barrera in developing the group.
The specific aims of the Melanie's Transition Group are to help bereaved siblings:
a) express their feelings of grief as well as feelings of guilt, anger, relief and happiness in a supportive and therapeutic environment;
b) understand the impact of the loss on themselves including personal changes in self-perception, roles (e.g., from older or younger to only child), relationships, growth and maturation;
c) learn additional strategies to cope with their daily life;
d) understand the impact of the loss on their parents, other family members, school and community; and
e) examine their relationship with family members (including the deceased child), peers and friends.
Melanie's sister Hailey is helping children with cancer by raising money for the Light the Night Walk for the Leukemia and Lymphoma Society of Canada. At the bottom of Hailey's page is information on how to register and join the walkers on October 2nd at Queens Park North at 5:30pm.
Dad provided this picture of Melanie (left) with her older sister Hailey on "The day we were told she is palliative. I took her home and we went for a swing."
Here is the logo of the Melanie's Transition Group:
The objective of the Melanie's Transition Group is to develop an evidence-based group intervention that will reduce distress and isolation in bereaved siblings, foster coping with grief and daily life after loss, and improve their quality of life with the ultimate goal to contribute to the improvement of quality of life for bereaved siblings and their families. The Blum family was assisted by Dr Maru Barrera in developing the group.
The specific aims of the Melanie's Transition Group are to help bereaved siblings:
a) express their feelings of grief as well as feelings of guilt, anger, relief and happiness in a supportive and therapeutic environment;
b) understand the impact of the loss on themselves including personal changes in self-perception, roles (e.g., from older or younger to only child), relationships, growth and maturation;
c) learn additional strategies to cope with their daily life;
d) understand the impact of the loss on their parents, other family members, school and community; and
e) examine their relationship with family members (including the deceased child), peers and friends.
Melanie's sister Hailey is helping children with cancer by raising money for the Light the Night Walk for the Leukemia and Lymphoma Society of Canada. At the bottom of Hailey's page is information on how to register and join the walkers on October 2nd at Queens Park North at 5:30pm.
Mother donates liver to AGS child
Three year old Prachi Gore, born with Alagille Syndrome, is recovering well after receiving part of her mom's liver during a complicated surgery in the first week of June. Since surgery at Manipal Hospital, Bangalore, Prachi's itching has stopped and her appetite has increased. While not disclosing Prachi's heart condition, the article quotes transplant surgeon Dr Ramcharan as saying “We hope more such people come forward for saving the lives of their near and dear ones."
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