Life and Death Matters

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In April this year my Dad passed away. I have been putting together a jigsaw puzzle since then and
now realize that so many people are in the same boat and many wouldn’t even know.
I have a simple idea that will save a lot of grief and heartache; a publication where your own
important details and wishes are enclosed and stored safely until required.
This planner and guide gives those left behind the answers they will initially need and after the event.

It’s not until you have experienced the loss of a loved one that you understand how important these details are.
What can be considered trivial at the time holds a lot of value when a family or individual are going through the grieving process.
This planner is much more than meets the eye. It is a personal informative guide that includes funeral, estate,
personal and medical information. I have had a goal to help people through the most difficult time of all by
preparing for something that we all have to face at one time or another.

PRESS RELEASE: Helping Parents Talk to Terminally Ill Children about End of Life

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FOR IMMEDIATE RELEASE                                                         CONTACT: Katie Stinchon (617) 269-7171

November 11, 2014                                                                                              


 Helping Parents Talk to Terminally Ill Children about End of Life


CAMBRIDGE, Mass. | A new Pediatric Starter Kit launched by The Conversation Project will help parents facilitate the critical and necessary conversation about end-of-life with their terminally ill children.


Research has shown that parents who talk about death with their children do not regret it – while many of those who do not talk about it regret not having done so. Medical literature and stories from the field show that children often sense that they are dying well before their care teams and families. Children don’t talk about it because they don’t want to upset, and feel an urge to protect, their parents.


Helping families overcome the communication barrier is the goal of The Conversation Project, a public engagement campaign with the mission to have everyone’s end-of-life care wishes expressed and respected.


At the heart of the project is the Conversation Starter Kit, a free downloadable step-by-step guide that helps adults have “the conversation” about their preferences for end-of-life care. Once the Starter Kit became widely used by adults, parents and pediatricians began contacting The Conversation Project to express the need for a guide specifically designed to help parents have the conversation with their seriously ill children, often not just once, but over time as the  disease progresses.


“For most adults, planning their own end-of-life care is difficult enough, let alone planning for the loss of a child.  It’s never easy, but we know how important this conversation is,“ says Ellen Goodman, founder of The Conversation Project. “We collaborated with parents, palliative care experts, and nurses to bring forth a guide to help ease parents into this delicate topic. There is no prescriptive, one-size-fits-all methodology, but rather multiple ways to begin and continue this conversation.”


The new Pediatric Starter Kit: Having the Conversation with Your Seriously Ill Child is now available for download. The Pediatric Starter Kit offers advice and provides stories from parents and palliative care specialists who have been there. It provides questions that can help parents navigate the approach to the conversation based on the personality and cognitive level of the child.


“No one wants children to die, but they still do,” says Dianne Gray, president of Elisabeth Kubler-Ross Foundation and a contributor of the Pediatric Starter Kit. “I understand it can seem unkind or cruel to talk to children about their own death, but it is not.” In 2005 Gray experienced the loss of her son, Austin, age 14, as a result of a neurodegenerative disorder.


“Though he was nonverbal the last five years of his life, we had developed a method of communication that worked for us,” says Gray. “Having those conversations with him was one of the most difficult, yet grandest acts of love that I could do for him. Knowing that he was a part of the decision making helps me feel such peace.” She now shares this message globally, as an advocate for pediatric palliative care via the International Children’s Palliative Care Network and the American Academy of Pediatrics Section of Hospice and Palliative Medicine.

The Pediatric Starter Kit provides suggestions and ways to navigate the conversation if a child or baby cannot speak.


“How parents and loved ones handle the end-of-life of a child can truly define that family going forward. Talking it through makes the impossible slightly less impossible,” says Blyth Lord, founder of the Courageous Parents Network and contributor to the Pediatric Starter Kit. “When your child has a terminal illness it becomes a part of the family’s narrative. Being prepared and having a plan can write the story of their child’s life so they can be at peace with the way it ended.”


Lord never got to have that conversation with her two-year-old daughter, Cameron, who died from Tay-Sachs, a degenerative disease. However, she credits her palliative care team for guiding her family through some of the most difficult decisions they’ve ever made.


“My husband and I had these conversations, practiced them with each other, and thought through every option with our pediatrician,” Lord says. “We would hear of families making these emergency decisions in the hospital, without time to think, and felt horrible for them. It’s hard to make a thoughtful decision in a crisis when you haven’t done the work.”


About The Conversation Project:

The Conversation Project, co-founded by Pulitzer Prize-winner Ellen Goodman and launched in collaboration with the Institute for Healthcare Improvement (IHI), is a public engagement campaign with a goal that is both simple and transformative: to have every person’s wishes for end-of-life care expressed and respected. Too many people die in a manner they would not choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain. The Conversation Project offers people the tools, guidance, and resources they need to begin talking with their loved ones about their wishes and preferences, before a medical crisis – “at the kitchen table,” not in the intensive care unit.


Let Brittany Maynard’s story spark a dialogue about the end of your life

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The Washington Post- Co-founder of The Conversation Project, Ellen Goodman, writes an op-ed for The Washington Post about the tragic story of Brittany Maynard. She writes, “Maynard’s decision to control the ending of her own life is the story of one in 500. Why, I have wondered should we continually engage our energies and our anger over a debate that affects.2 percent. What about the 99.8?” (Goodman, The Washington Post). Ellen discusses the need to shift the national attention to conversations about end-of-life care–not assisted suicide.

Read the rest of the op-ed here. 

How to Talk About The End-Of-Life

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TIME Magazine- As the conversation surrounding Brittany Maynard, the 29 year old woman with terminal cancer who has decided to end her life by assisted suicide in Oregon, The Conversation Project (TCP) weighs in on the importance of having conversations surrounding end of life care. TCP co-founder, Ellen Goodman, is quoted in the article saying that, “It’s critically important for us to have these conversations at the kitchen table. Too many people are not dying in the way that they would choose, and we need to change that,” (TIME Magazine).

Read the full article here.

A Conversation With a Cancer Patient about Palliative Care

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Stanford Medicine- A palliative care expert from Stanford Medical Center, Timothy Quill, hosted a heartfelt and intimate interview with a neurosurgeon who is suffering from stage IV lung cancer. The conversation between the two men sheds  light on the need for physicians to have conversations about end-of-life care.

Read the full interview here.