Pediatric palliative care is the care provided for children with critical health conditions, seeking to improve their quality of life and support their families. Even though pediatric palliative care has been around for years, there are still many misconceptions around it. And these misconceptions can make it confusing for families who need palliative care for their children.
That said, we’re here to clear up some common myths about pediatric palliative care and help families learn more about the program:
Myth 1: Pediatric palliative care is for children that are dying.
Fact: Palliative care services, in general, is for people with life-threatening illnesses. Patients in palliative care are not necessarily dying, so when a child is in palliative care, they can still live for years.
Myth 2: Palliative treatment for adults can be adjusted for pediatric patients
Fact: Palliative treatment between adults and children certainly do have similarities. However, palliative care for adults cannot be adjusted to accommodate pediatric patients. Children need care that is adjusted to fit their needs regarding their condition, age, and awareness.
Myth 3: Palliative care is only for children with cancer
Fact: While many children in pediatric palliative care are cancer patients, palliative care deals with many other health conditions. In fact, nearly 400 conditions are listed as appropriate for pediatric palliative treatment. You can check out the list of conditions here.
Myth 4: Palliative care is only done at the end of one’s life
Fact: Palliative treatment can start as soon as a child is diagnosed with a life-limiting illness or at any point during its progression.
Myth 5: Getting palliative care is like giving up hope
Fact: Palliative care aims to improve a child’s quality of life despite their illness, even if that life can be shorter than expected. It is not ‘giving up hope,’ as most people perceive palliative care. Providers of palliative care always believe that something can be done to help a child and their family achieve a better quality of life.
Myth 6: Pediatric palliative care is depressing
Fact: It is easy to understand why many people think that palliative care is depressing, especially when done for children. But even if palliative care sees some of the most difficult parts of a family’s life, it also sees the beauty of providing patients and their families with a higher quality of life, joy, and dignity. Just like other types of health care, palliative care is both sad and happy, but definitely not always depressing.
Myth 7: Palliative care can only be provided in a hospital
Fact: The ideal setting for this program is a palliative care clinic. However, palliative care can also be provided at home.
Myth 8: Palliative care ends when the patient dies
Fact: Even if the patient is gone, palliative care can continue providing support to the family members left behind. The child’s family can receive bereavement services that can help them cope with the loss in healthy ways.
Myth 9: Children in palliative care should not be aware that they are dying
Fact: Parents naturally want to shield children from truths that can hurt them. It is perfectly normal to feel that way and is completely understandable. However, children as young as three already have the intuition to know that they are dying. Thus, parents should tell their children the truth. In this way, children can better express their thoughts and process their emotions, giving way to a better mental state and quality of life.
Myth 10: Pain is always part of dying.
Fact: All parents fear their child experiencing pain, whether it be physical or emotional. It can be a small relief for them to know that pain is not always a part of death. And if it is present when death is near, there are many ways it can be relieved or at least properly managed.
Myth 11: Pediatric palliative care patients can’t have a normal life
Fact: There are certain limits that a palliative care patient might face because of their condition. However, they might still be able to continue living like a normal child that goes to school, plays with friends, explores the outdoors, and engages in hobbies and interests.
Parents must know where their child’s limits lie. Doctors and palliative care providers can help them understand these limits and how to help their child make the most out of life despite these limits.
Pediatric palliative care is often seen as a depressing, hopeless, and distressing health program. But if families know the truths behind the misconceptions, they would know that palliative care can be filled with joy, love, and happiness for them and their children, even if that time is limited.