Palliative care has become an increasingly essential part of care for those with serious illnesses — including kids with cancer.
If you’re the parent of a child with cancer, you’ve no doubt been introduced to the concept of palliative care. Although palliative care is often associated with hospice or end-of-life care, it is becoming the standard for all care.
This type of care is patient- and family-centric, regardless of the diagnosis. Palliative care is best applied from the very beginning to maximize overall health and positive outcomes.
In short, palliative care is a special, personalized approach to care that focuses on increasing comfort and quality of life. It is used in tandem with traditional forms of cancer care.
“Comfort and quality of life,” is too broad. Palliative care can be broken down into several categories of focus.
Pain Management — A large part of palliative care is decreasing pain and other symptoms caused by both the illness and the treatment. Sleep disruptions, fatigue, loss of appetite, nausea, and constipation are just some of the symptoms that can be addressed.
Mental Health — Cancer takes a mental and emotional toll on both patients and their families. Palliative care often incorporates the use of therapists and other mental health professionals to help children process their emotions while relieving symptoms of anxiety and depression.
Spiritual Health — For families with faith traditions, spiritual health plays a role in palliative care, too. Encouragement from faith leaders, faith-based counselors, and other spiritual sources can give patients a sense of comfort, hope, and peace throughout their cancer treatment.
Care Coordination — Palliative care puts caregivers on the same page, coordinating care methods, schedules, and communication among your child’s care team and to you, the parents.
Connection to Resources — Palliative care connects families to much-needed social, financial, and community resources. These resources can ease some of the burdens of care through aid with meals, transportation, and finances.
Palliative care comes from a wide variety of professionals, both within the healthcare sphere and beyond it. It’s important to remember that this is not strictly medical care — it’s care for your whole child.
Some doctors and nurses specialize in palliative care, but you may also find aid from:
Your child’s care team can evaluate or refer your family for palliative care, which is often covered by insurance. Many hospitals, especially those that specialize in treating cancer and other serious illnesses, will have a palliative care team on staff. Sometimes, it will even include volunteers from the community.
If you’re close to a child with cancer, whether you are a parent, sibling, family member, or friend, you are already playing an invaluable role in palliative care.
Parents, you know what your child needs. You know what is best for them and their health. By nature, you want the absolute best care and outcomes for your child. You play the role of setting goals for your family and your child’s care. Advocate for your child and your family. Don’t be afraid to ask for options, explanations, and referrals if you think something is missing or unclear in your child’s care.
If you’re not the parent of a child with cancer, you can still help.
Even if you are not a healthcare professional or otherwise qualified to offer palliative care, your efforts to love and support the family are crucial. Healthy parents and healthy families are better able to love, care, and focus on a child with cancer.
As vital support in their lives, you can offer to ease daily stresses and burdens by providing meals, transportation, caregiving, housekeeping, and other means of support. Something as simple as mowing their lawn, offering to do laundry, or taking the other kids out for few hours can make all the difference in the world.
Do not wait for the parents to tell you what they need from you.
Take the initiative. You know what daily and weekly tasks are burdensome, mentally, physically, and emotionally. Take those burdens off of their plate either by volunteering yourself, coordinating a schedule with their community, or hiring crucial services.
When you do these things, you contribute to the quality of life and care for children with cancer.