Early in my medical training, I developed an appreciation for the positive impact of pediatric palliative care on the lives of patients, families and medical providers. In fact, I chose to specialize in both neonatology and hospice and palliative care, so that I could incorporate palliative care concepts into the sickest and most complex patients.
Palliative care is an approach to medicine that focuses on improving the patient’s and family’s quality of life by managing symptoms and alleviating distress in the setting of a complex, life-threatening, or potentially life-limiting illness.
Many people who are familiar with palliative care have heard of it through an adult relative who needed hospice or end-of-life care. While this is an important part of what palliative care physicians do, it’s only a small part of the total care we provide.
I aim to help families understand the role of palliative care, because I am passionate about the difference it makes. For instance, when families receive devastating news about their pregnancy or baby, they are faced with many difficult decisions and complex medical information. I help them navigate this, as well as celebrate the beautiful moments and simply parent their baby.
I would like to dispel some of the more common misconceptions I have heard from families about this unique form of care. My hope is that as a result, families will be more likely to ask for and utilize the support and services palliative care can provide.
3 COMMON MISCONCEPTIONS ABOUT PALLIATIVE CARE
1. PALLIATIVE CARE IS DYING & END-OF-LIFE CARE
There is a misconception that palliative care is only for terminal patients. Palliative care physicians take care of patients at any age who have serious, life-altering, or possibly life-limiting medical conditions. They focus on addressing suffering of all kinds, including pain, physical symptoms, as well as mental, spiritual and emotional distress.
Some families can be reluctant to involve palliative care, feeling as if they and their doctors are giving up hope. On the contrary, palliative care is appropriate for many patients and families while they are still getting treatment and working towards being well or hoping for a cure.
The sooner we are brought in, the sooner we can learn about what’s important to your family and how your child’s care plan can be individualized specifically to them. We’ll learn what you’re most worried about and try to offer solutions. With those worries addressed, you will be able to spend more quality time together, have more coping strategies to handle the stress of a sick child, and be able to rest easier knowing your child’s symptoms (like pain or nausea) are addressed.
2. PALLIATIVE CARE ONLY PROVIDES PAIN MEDICINES
Sure, palliative care offers expertise in pain and symptom management for children with a serious diagnosis and/or challenging and severe symptoms. But it’s so much more than that. Our overall objective is to improve the patient’s and family’s quality of life. The sooner the palliative care team is a part of the care team, the sooner they can help make an impact.
First, we do this by addressing both physical and other forms of suffering. This is followed by helping your child become more functional, reducing uncertainty and providing support for medical decisions that lie ahead. Typically, we’ll create a plan together based on your family’s values and help communicate it to the rest of the medical team. As a palliative care physician within neonatology, I’ll help families create birth plans and ideas to cherish those special moments during the pregnancy and right after delivery. As a neonatologist, I appreciate the support I receive from the palliative care team and having a partner in supporting the family, discussing parents’ hopes and fears, and developing meaningful goals of care.
3. PALLIATIVE CARE ONLY HELPS THE PATIENT
What I love about palliative care is that it gives some power to parents who feel like they have none. When we understand what’s important to your family, we can help empower families to find situations where they do have choices. If your daughter’s favorite part of her day is playing Legos with her brother, you may be able to choose a medication or procedure schedule that will allow her to still do this. Giving patients and families back a little control in a difficult situation can make a big difference. Palliative Care can also provide holistic therapies like massages, acupuncture, and music therapy, which the whole family can enjoy together. Creating music and songs concurrently may give siblings space to process their feelings.
Those are three common misconceptions about palliative care. It’s a philosophy of care that emphasizes quality of life, is patient focused, and not limited to reducing or eliminating care. While many palliative patients are very ill, many can and will recover. Though I do not always know who will recover, I believe all patients with life-threatening illnesses can benefit from this extra layer of support. Palliative care is tailored to each family and can be as unique and individualistic as our patients and families are.