About six years ago, the National Institutes of Health (NIH) announced it’s support for palliative care (pronounced pal-lee-uh-tiv) for adults and children suffering from serious illness. Today, 70% of Americans still do not know what it is. To be honest, for a long, long time, I always associated palliative care with death, dying and hospice.

Many of the services offered under palliative care would have been great to have had in the case of my grandson who was 15 months old when he was diagnosed with High Risk Neuroblastoma and has been a survivor going on eight years.  I know now that my daughter and her entire family could have benefitted greatly from palliative care during those years of treatment and Conor becoming a survivor. Unfortunately, ten years ago, there was very little offered to help families like my daughter’s (mother, father, older sister, one on the way) in similar situations with a small child with cancer.

Sometime back, I started doing a little investigating on today’s version of pediatric palliative care.  “The goal of palliative care is to relieve suffering and provide the best possible quality of life for people facing the pain, symptoms and stresses of serious illness. It is appropriate at any age and at any stage of an illness, and can be provided along with treatments that are meant to cure you.”  Cure? Yep, they said cure! I found out that palliative care is mostly misunderstood.  It is not the same as hospice, it is not “end of life” care, or anything like it. In December, The New England Journal of Medicine said clearly, “Palliative care suffers from an identity problem. Seventy percent of Americans describe themselves as “not at all knowledgeable” about palliative care, and most health care professionals believe it is synonymous with end-of-life care.” Dr. Joanne Wolfe, the director of pediatric palliative care at Boston Children’s Hospital, and a respected researcher, sees a lack of knowledge as the greatest obstacle to improving palliative care for children. She says parents need to ask that there be a high focus on the child’s physical, emotional, and spiritual well-being because a child’s day-to-day life during cancer treatment has long-lasting effects. “I want kids to emerge from cancer as children with greater strength and not undue or preventable injuries as a result of treatment.”

How does palliative care work for children with cancer? I found that pediatric palliative care is specialized medical care that uses a team of doctors, nurses, social services people to help family life and other specialists who work together with a child’s oncologists and other doctors. The “team” is focused on providing relief from the symptoms, pain, and stress on the family. The goal is to improve quality of life for both the child, and the family.

I know from my own experience that once cancer knocks on the door, it take’s over the entire family and their individual lives from that day forward. “Quality of life for both the child and the family,” is something that is desperately needed. When cancer arrives, members of our childhood cancer community know what happens. Work suffers, finances suffer, schedules are no more, relationships with spouse and family and friends are turned upside down and worse of all, the brothers and sisters of the child with cancer are thrown into an emotional universe where often their needs become much less important than those of the patient. What everyone needs, including the child with cancer, is a “normal“ family environment, not turmoil and chaos. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family. The earlier you enter into palliative care, the better, but it’s never too late to start. Pediatric palliative care can help children suffering from cancer and their families.

The conclusion of the New England Journal of Medicine article reads,  “Patients who access earlier specialty palliative care have better clinical outcomes at potentially lower costs — a compelling message for providers, policymakers, and the general public.” Notice the words, “better clinical outcomes.” Does that sound anything like “death,” or “end of life?”

Benefits of Pediatric Palliative Care: www.GetPalliativeCare.org is an excellent source for more information and provide the following:

Pediatric palliative specialists focus on your whole child and how your child’s illness and treatment affect the entire family. 

The palliative care team supports your child and family every step of the way, not only by controlling symptoms, but also by helping you to understand all of the treatment goals and options.

Working together with your primary doctor, the palliative care team provides an extra layer of support through:

• Close communication and time
• Expert management of pain and other symptoms
• Help navigating the healthcare system
• Guidance with difficult and complex treatment choices
• Emotional and spiritual support for you and your child

It is important to remember that blending palliative care with curative treatment is essential in providing your child and family with the most complete medical care possible.

Looking back, our family could have certainly used palliative care and I suspect many, if not most, in our childhood cancer community would say the same.  If you have a child that is being treated for cancer, I suggest you look into pediatric palliative care for the child, you, and your family. They will help you and your family move through the journey and will even assist after treatment while your child is on the road of survivorship.  Speak to your doctor. A list of hospitals that practice palliative care can be found at www.GetPalliativeCare.org

There is a bill in Congress now that has passed the House and is in the Senate and continues to have a lot of bipartisan support.  The Palliative Care and Hospice Education and Training Act (PCHETA) aims to establish Palliative Care and Hospice Education Centers, provide physician and nurse training in palliative medicine. It provides Palliative Medicine and Hospice Academic and Career Incentive Awards to individuals to support career development, develop a national education and awareness campaign, and to expand national palliative care research programs.  I fully support this bill.

Author: Joe Baber

updated April 14, 2020

Good sources of information on Palliative Care:

Kelly Michelson, critical care physician at Northwestern University has an excellent article on the Huffington Post. Check it out here

  NIH

Get Palliative Care .ORG

New England Journal of Medicine

Space

ACS

ACS Article Easing the burden of cancer  through palliative care

The American Cancer Society has an excellent video:  Palliative Care Video

Palliative Care: Life-Changing Support for Those Facing Cancer by Rebecca Kirch, JD,  Director of Quality of Life and Survivorship for the American Cancer Society. A quality care expert, Rebecca’s work focuses on improving quality of life and preventing suffering for all adults, children, and families facing cancer.

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Last update: 1/23/2020