When I Heard I Needed Palliative Care

I was diagnosed with lung cancer in 2014. I have only had to stay at the hospital in the beginning when I was diagnosed, shortly after for about two weeks, and then again when I had my surgery. I don’t remember a lot from the hospital stays but one thing that sticks out in my memory is when I first hear the term “palliative care”.

An initial misunderstanding

I had started treatment and it failed so I was admitted to the hospital for emergent chemotherapy. This came with all sorts of side effects such as pain, nausea and vomiting, and GI issues. The doctors were having such a hard time getting the pain under control that they decided to refer me to a palliative care team. My nurse and I shared a look when we were told this because the first thing we thought of was HOSPICE!

I was scared and had a lot of questions. I was not ready to face my death as I was still so young and just very newly diagnosed. I (like everyone else) wanted to continue with life. It made me very happy to learn that palliative care was not hospice and that it was a way to get the stubborn side effects under control.

What is palliative care?

Palliative care is care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. Palliative care is an approach to care that addresses the person, not just their disease.¹

The palliative care team addressed the pain first. It was decided that I would alternate pain medications as well as have short-acting and long-acting pain medication. It helped significantly! The next thing to accomplish was nausea and vomiting. It was decided that I would have two nausea meds on board. This led to also helping with appetite. I struggled with eating after the first chemotherapy dose was given. I found that along with the nausea medicines that drinking ginger water helped with my appetite.

It is important to know that it can be introduced at any stage of the disease. I found it most helpful when I was taking chemotherapy but also while I was in the hospital and trying to recover to be released.

How can palliative care help lung cancer patients?

There are many things that a palliative care team can help a patient with. Palliative care can also be referred to as comfort care so along with the things I have already mentioned such as pain, nausea and vomiting, and GI issues they can help with other issues such as high blood pressure, confusion, coughing (or chronic cough), wheezing and many other side effects.

I am certainly not the first person to confuse palliative care with hospice. I have learned the differences along the way since being diagnosed. To better clarify the difference, the definition of hospice is “a special model of care for patients who are in the late phase of an incurable illness and wish to receive end-of-life care at home or in a specialized care setting.”²

Let me know if you have had a positive or negative experience with a palliative care team in the comments. Did you know the difference before you needed it?