Susan Willoughby, RN
Honest Answers and Difficult Choices
Susan Willoughby’s passion for her work propels her through the toughest days. Her dedication to a sometimes difficult – but always rewarding – job makes life more bearable for families fighting terminal illness.
A registered nurse and certified hospice and palliative nurse, Willoughby serves as the palliative care coordinator for Children's Hospital Central California. In this role she provides crucial support to families from the moment they receive the heart-breaking diagnosis of a life-threatening illness.
“Children aren’t supposed to die,” said Willoughby with compassion. “So there wasn’t a solid program for end-of-life care.”
Palliative care came to Children's Hospital in 2004 while Willoughby was working for Hinds Hospice in Fresno. Her employer, Nancy Hinds, saw a need for these services and asked Willoughby to work part time at the Hospital to meet it. Modeled after hospice, palliative care utilizes an interdisciplinary team approach and addresses the social, cultural, spiritual and physical needs of dying children and their families. Hinds Hospice generously covered Willoughby’s time at the Hospital. Then in 2006, the Hospital hired Willoughby as a full-time coordinator with help from a grant from First 5 Fresno County.
Susan’s experience with both Hinds Hospice and Saint Agnes Medical Center Hospice, where she also worked, as well as her special gift for talking with families in crisis, make her a valuable resource at Children’s. She understands our society does not want to talk about death and dying, and she sees how hard everyone works to cure the children in their care. Sadly, some illnesses cannot be cured. In times like these, palliative care offers hurting families support and essential services. “The way I look at palliative care is that it’s not about dying,” said Willoughby. “It’s about how to live with the set of circumstances they’ve been dealt.”
Unfortunately, this vital program is rare among pediatric hospitals. Conventional wisdom suggests welcoming such a program admits failure. Susan is glad the doctors and nurses at Children’s are beyond seeing end-of-life care that way.
Thousands of children regularly exit our doors and bid goodbye to George the Giraffe headed toward complete recovery. Tragically, that happy ending doesn’t happen for every family. And those families have needs that should not be overlooked.
Families wrestling with fresh knowledge of a terminal illness need someone they trust to be honest with them and make them aware of their choices. Palliative care gives parents and children peace of mind because they learn what to expect. Together with the social workers at Children’s, Willoughby serves as an advocate for deeper understanding of end-of-life issues. “We have answers and people to talk to,” she said.
Willoughby and her team address sensitive issues such as considering the benefit versus the burden of continuing treatments, discerning whether the family puts more weight on length of life or quality of life, and determining what quality of life means to them. This vital program helps empower families to state what matters most, to make informed choices, and to feel at peace about those choices. Parents learn their wishes will be met regarding what is communicated to their child. When patients know their prognosis, they are encouraged to talk about their own wishes. Willoughby asks them about their goals and what they would like to accomplish in their lives. She carefully inquires about their wishes at the end. Would they prefer going home or staying in the hospital? Would they rather feel sleepy or feel pain?
Some families refuse to accept death. In those cases Willoughby likes to say, “Let’s work toward a cure, let’s pray for a miracle, and let’s plan for what happens ‘if.’” She gently helps them see the benefit of preparing for the worst-case scenario, just in case.
The palliative care program at Children’s also addresses the needs of patient care providers. “No matter what, we need to support the families in their decisions, and that can be hard,” said Willoughby. Especially when it comes to accepting the parents’ decision whether to inform their child of his or her diagnosis and their choices regarding continuing or stopping treatment. At times like these a social worker will prepare a case review, and will help the caregiver better understand the circumstances leading to uncomfortable parental decisions.
Some families choose to say their difficult goodbyes at home. Children’s contracts with Hinds Center for Grief and Loss to provide services to these families after they leave the Hospital, and all patient families receive a referral for bereavement care through Hinds or other hospice programs all over the Central Valley.
Willoughby makes sure parents and their children understand they will not be alone and will receive all the support they need through hospice, but that they are welcome to come back any time. And if they do, Willoughby will likely be here for them.
“Some days I just can’t come to work, I’ll be honest,” said Willoughby. “It hurts too much. But when parents have an ‘I never would have thought of that’ moment, it makes it all worthwhile.”
Anyone can make a referral to Children’s Hospital’s palliative care program by contacting Susan Willoughby, palliative care coordinator, at (559) 353-8667 or Children’s Social Services at (559) 353-5270.