It's the question no one wants to hear: Am I going to die?
Registered Nurse Susan Willoughby has been asked that question by many young patients at Children's Hospital Central California.
The goal of every doctor, nurse and staff member at Children's Hospital is to help kids live long and happy lives. Death is not a topic most want to discuss. But the harsh reality is that, despite all their expertise and effort, not every patient can be cured or saved. That's when Willoughby gets involved as the primary person in the hospital's Palliative Care program.
"Palliative Care is comfort care and is for anyone who has a diagnosis that may limit their life. It may limit their life to 30 years. It may limit it to months. We don't know. It goes right alongside curative care to make sure patients and families understand what their options for care are," says Willoughby.
She gets some help from Visalia-based Dr. David Sine, who works 10 hours a month with the hospital. Sine became part of the Palliative Care program in July as a Pediatric Palliative Care consultant.
"I'm the person who would help with pain and symptom management. If there's a kid -- and it doesn't mean that they're dying -- but are at a point where in their treatment they have pain or symptoms that need to be managed its my role to educate them. I would work with their primary doctor," says Sine. "If the patient does go home on hospice, then we are a resource to the patient looking out for them."
But it's generally Willoughby, one of 90 nationally certified Hospice and Pediatric Palliative Care specialists in the United States, who supports families of critically ill patients. Palliative care differs from hospice care, which generally deals with patients who have been diagnosed with six months or less to live.
The goal is simple: add life to a child's years. It's always a situation where everyone hopes for the best, but they must plan for the worst.
Palliative care starts with education. Willoughby has seen during her decades as a nurse -- the last six years with the hospital's Palliative Care program -- that a hospital can be a scary place, especially if the patient doesn't completely understand what's happening. She tries to provide answer to any questions that the patient, or their families, might have.
"If they know what they're looking at or experiencing, it's not surprising that the family can deal with it better," Willoughby says. "There's something about talking to a family that you can just see them calm down."
Willoughby gets to know the patients long before her services might be needed by going on rounds with the doctors. That makes her a familiar face when she needs to become part of the patient's life.
Sine says talking with the patients and families is important because it's all about control. Studies have shown that children as young as six need to feel like they have some control on what's happening in their life and what is being done to them.
On average, there are 12-20 patients at any time in the hospital with which Willoughby works.
That number could increase as the hospital gets more aggressive in looking at life-care planning for children with chronic illnesses and helping them plan what their goals are and what's important to them.
Although Palliative Care doesn't focus on cures, the staff understands how important it is to patients when it becomes necessary. Dr. Faisal Razzaqi, an oncology physician, calls Willoughby a great liaison between the doctors and the families.
Why Willoughby works so hard to make the Palliative Care program work is simple, she says: "It's an honor."
TV and movie critic Rick Bentley can be reached at (559) 441-6355, firstname.lastname@example.org or @RickBentley1 on Twitter. Read his blog at fresnobeehive.com.