3 Common Misconceptions About Palliative Care
Early in my medical training, I developed an appreciation for the positive impact of pediatric palliative care on the lives of families and patients. Palliative care is an approach to medical care that focuses on improving the patient’s quality of life and alleviating distress in the setting of a life-threatening or life-limiting illness.
As a neonatologist in training, I felt drawn to those families receiving devastating news about their babies. I felt compelled to help guide them through the difficult medical decisions, to focus on addressing quality of life, help them celebrate the beautiful moments, and parent their baby. As an intensivist, I valued having palliative care concepts incorporated into the care I provided for my sickest patients.
Today, I practice as a neonatologist and palliative care physician. When asked, many families can tell me what a neonatologist does but are unable to explain what a palliative care physician does.
If they are familiar with palliative care, typically it has been with an adult relative utilizing hospice or end-of-life care. Absolutely, end-of-life care is an important aspect of what we do, but it’s only a small part.
Palliative care can play a valuable role in the lives of all kids with serious diagnoses. As a neonatologist I appreciate the support I get from the palliative care team. I appreciate having a partner in supporting the family, discussing parents’ hopes and fears, and developing meaningful goals for care in often desperate situations. The sooner we are a part of the care team, the sooner we can help make an impact.
I aim to help families understand the role of palliative care, because I am passionate about the difference it makes. I would like to dispel some of the more common misconceptions parents tell me about this unique form of care. My hope is that as a result, families will be more likely to ask for and utilize it. Here are some clarifying points on a few of the more common misconceptions about it:
3 Common Misconceptions About Palliative Care
1. It only addresses end-of-life care
There is a misconception that palliative care is only for terminal patients. 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 pursuing curative and life-sustaining therapies. The sooner we are brought in, the sooner we can learn about what’s important to your family. We’ll learn what you’re most worried about and try to offer solutions. This will allow you to spend quality time together by providing symptom relief as well as coping strategies.
2. It only offers comfort measures
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. 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 support for medical decisions that lie ahead. Typically, we’ll create a plan together based on your family’s values. As a palliative care physician within neonatology, I’ll help families create birth plans and ideas to cherish those special moments.
3. It 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 create situations where you’re able to make choices. If your daughter’s favorite part of her day is playing Legos with her brother, you can choose a medication and procedure schedule to make it happen. This returns control to my patients and their parents. We can also provide holistic therapies like massages and music therapy, which the whole family can enjoy together. Creating music and songs concurrently may also help siblings process their feelings better.
Those are the three most 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 of my 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 illness can benefit from this extra layer of support.
I hope you’ll join me in dispelling some of the common misconceptions about palliative care by sharing this blog post. Palliative care is tailored to each family and can be as unique and individualistic as our patients and families are.