Ethics Emotions and Skills of Talking about Progressing Disease with Terminally Ill Adolescents

For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents’ emerging autonomy, they often must also work with parents’ wishes to protect patients from the emotional distress of hearing bad news. This article, published in the October 2016 JAMA Pediatrics journal, reviews the ethical justifications for and against truth-telling as well as the published ethical and practice guidance and perspectives of patients, parents and clinicians involved in these cases.

The article discusses skills and words that may help in having these conversations, cultural concerns, timing, circumstance and provides a graph with sample conversations and/or scenarios for each of these topics.

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Loving My Son, After His Death

Author and mother Nora Wong communicates the depth of her loss three years after her son died from a rare seizure disorder. Nora is working on a memoir and shared  this beautifully written and poignant piece recently in a NY Times Article. 'I will carry this child for the rest of my life. He lives within me, forever a young man of 22. Others will carry him as they move forward in their lives. He will be with them when they look out to the world with compassion, when they act with determination and kindness, when they are brave enough to contemplate all the things in life that remain unknown.'

Palliative Care Program Reduces Stress, Costs of Care for Children with Life-Threatening Conditions

Similar to the Care at Home (CAH) I & II Pediatric Palliative Care Waiver program in New York State, in 2010 California mandated that the DOH develop a pediatric palliative care benefit for children eligible for Medi-Cal alongside of curative care and regardless of the child's life expectancy. The objective of both programs is to improve the quality of life for the child and their family through the provision of supportive home-based services and to minimize costly hospital stays.

This article examines California's public pediatric community-based palliative care benefit. Based on preliminary results there is evidence that the program has reduced costs and improved quality of life by providing beneficial services to a vulnerable group of children and their families however additional recommendations have been made, these include:

1) Efforts to retain current providers and recruit new ones should be prioritized. Efforts should include encouraging the participation of hospice and home health agencies to participate.

2) Concentrated efforts should be made to provide continuing education to the medical community and across settings regarding the practice of community-based pediatric palliative care.

3) Build on existing partnerships and develop new collaborations to share best practices and simplify referral and enrollment processes.

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Talking to Kids About Death and Dying

Outside of hospice and palliative care where addressing the spiritual concerns of both patients and caregivers introducting a spiritual component to care is rare. The HeatlthCare Chaplaincy Network publishes a magazine called, 'Caring for the Human Spirit.' In this edition, Martha Dimmers, M.Div., MSW, the manager, pastoral and spiritual care and staff support team at Seattle Children’s Hospital, Washington wrote an article entitled, Speaking with Kids about Death and Dying. Martha Dimmers, M.Div., MSW, the manager, pastoral and spiritual care and staff support team at Seattle Children’s Hospital, Washington wrote an article entitled, Speaking with Kids about Death and Dying.' Stating that, 'kinds have something to say about their health, their death and their faith,' Martha makes that point by reviewing one case study of a 16 year old and her family as she worked with them throughout her terminal illness. Read the story here.