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CHPCC is currently conducting a survey regarding knowledge of and utilization of the Affordable Care Act, Provision 2302, in which treatment services are available for children and youth under 21 who enroll in hospice. The survey takes 5-7 minutes to complete. If you represent an organization which provides care for children with life-threatening conditions, we would appreciate it if you would complete the survey or forward it to the appropriate person within your organization. Click here for the survey.
A study conducted by PedPalNET
Are you a parent/guardian whose child has died from a life-limiting illness?
If so, PedPalNET is looking for parents/guardians who are willing to participate in a study of how the experience of having cared for a child with a life-limiting illness changes parents’ lives. For this study, you will be asked to complete a set of questionnaires at two separate times. The questionnaires will be sent to you by mail and will take 1 to 1.5 hours to complete. Questionnaires are available in either English or French.
For more information, or if you are interested in participating in this study, please contact the Research Coordinator at 1-800-810-0721.
Principal Investigator: Dr. Susan Cadell, Assistant Professor & Director of the Centre for Healthy Living, Wilfrid Laurier University
Conversations about end-of-life care are never easy, especially when the care concerns a seriously ill child. CHPCC, together with the Coalition for Compassionate Care of California, has developed a curriculum that teaches clinicians how to have sensitive, meaningful end-of-life care discussions with parents about their child. To be released in 2012, the curriculum guides doctors, nurses, and other providers in using a POLST (Physician Orders for Life-Sustaining Treatment) form to record parents’ wishes for their child’s care in the final days of life. For a sample of the POLST form, see California’s form.
A yearlong development process, which has included input from pediatric palliative care experts throughout the western US, has yielded a day long training that will be offered in northern, central and southern California in 2012.
The curriculum emphasizes the importance of compassionate conversation and relationship-building between family and clinician as the essential foundation to successful completion of the POLST document.
The day long training challenges participants to consider their own values as they consider end of life choices, as well as providing practical education on the key components of POLST. Central to the curriculum is a step by step guide in how to have a successful family meeting which includes conversation about POLST, even “helpful phrases” to use in the conversation.
By the end of the day, clinicians will walk away with concrete new tools they can use in building relationship and guiding the most important medical conversations families will ever have.
Clinical guidelines for talking with parents about POLST:
To learn more, click here.
Guidance from CHPCC’s Family Advisory Council on talking with parents about POLST:
To learn more, click here.
HOPE magazine is a bi-annual publication of CHPCC designed to bring awareness to the issues that surround healthcare for children living with serious, debilitating illnesses and their families.
HOPE Magazine 2012
HOPE Magazine 2010
CHPCC’s Pilot Assessment and Capacity Evaluation (PACE) study represents a milestone in statewide efforts to implement the new Medi-Cal Benefit. Completed by CHPCC in 2010, the study reviews the current landscape for pediatric home health and hospice programs in California. It also gauges the potential for additional healthcare providers to offer services to seriously ill children.
To download CHPCC’s report on the PACE study click here.
Study shows that seriously ill children would rather be at home than anywhere else.
“The place of death of an infant, child, or adolescent who has lived with a medically complex chronic condition (hospital, home, or elsewhere) may be shifting over time. If so, what factors influence the place where these children die?
A growing body of evidence suggests that for pediatric patients who die of terminal illnesses, the location at the time of death has important implications. In addition to many pediatric palliative care clinicians attesting that “home is almost always the preference of the child, who can be in familiar surroundings,” when care is provided in the home setting, parental satisfaction with care appears to be greater, and subsequent adaptation and outcomes for parents and siblings may be improved…” Read more
If you know of another research study that is relevant to pediatric palliative care, we would appreciate if you would share it with us by contacting Devon at devon@childrenshospice.org.
A tribute to Caroline…Christy Licker dedicates $10,000 in proceeds from Caroline’s Thrift Store to CHPCC in memory of her daughter.
