Everyone always says the same thing AFTER they the find out the difference between palliative care and hospice: “My [insert family member] would have really benefitted from palliative care HAD WE KNOWN THAT…[insert numerous palliative benefits here].”
The goal of palliative care is to improve the quality of life while one is dealing with a serious illness. Note: I didn’t say while someone is dying. Palliative care is not about death or dying! Even though my mom was on the back end of her fight with lung cancer (though we didn’t TECHNICALLY know that)…she was still alive! She was still living!! What she needed to know was how to LIVE with a difficult fight with lung cancer. What we knew was that she was still mentally coherent, but daily activities were difficult for her. Even though she was still reading her daily Bible studies, opening mail and taking car rides, it was getting harder and harder for her to do those simple tasks. All she really wanted and needed was someone to explain what was happening to her. She was fearful and the fear fueled her anxiety. She didn’t necessarily need or want anti-anxiety meds, but they helped a bit. What she really needed was someone to talk to her, show her how to cope, show her what was happening to her body. She needed someone to help her figure out how not to get frustrated because she couldn’t do simple things. My mom needed to understand the why. When you don’t know what’s happening to you, it’s hard to figure out what to do. Lung cancer is sneaky and you don’t know how quickly things change. Every day mom woke up to something new that was affecting her quality of life. Palliative care would have helped her cope with those daily changes.
To me, palliative care provides peace of mind, for the patient and for their family. Palliative care helps control symptoms, offers solutions for dealing with depression and provides long-term options for handling issues specific to a particular illness. Palliative care can be tailored to an individual’s specific need and it can be offered along with curative care. There are several individuals involved in providing this palliative care, including primary care physicians, therapists, chaplains and social workers. They work together as a TEAM. A team approach is necessary because unfortunately, one primary care physician just can’t do it alone, nor does he or she have the time to do it all.
I’m sitting here thinking about today’s lung cancer social media chat on Twitter (#lcsm) and remembering the first conversation we had with mom’s doctor about palliative care. As we were trying to come up with a plan to help deal with mom’s pain (back pain, shoulder pain), her doctor said we could do palliative and hospice care, but that’s about it. What did that mean? Palliative AND hospice care? How does that work? When you don’t know the difference between the two and one of them you’ve never heard of, how can you make an informed decision?? Who teaches the teacher? Meaning, who tells the doctor how to tell the patient? It wasn’t just about the pain. Many of us don’t know what we don’t know. And we knew NOTHING about palliative care so therefore we didn’t know what to ask. Just like insurance, no one talks about it until you need it and many of us walk around as if we’re invincible. Let me tell you something, life happens to all of us…from cancer to major surgery to chronic diseases. What we need is a way to deal with it, a way to handle it. Palliative care does just that; it helps you to continue living. No one wants to struggle to live. Palliative care helps remove the struggle.
Join our lung cancer social media chat on Twitter tonight, January 16, 7 p.m. CST. We’ll be talking about the basics of palliative care. Don’t miss out on an opportunity to learn more about something that benefits all of us, regardless of the illness.