Saturday, March 19, 2016
By Amy Velasquez RN BSN OCN
As a palliative care nurse that specializes in oncology I have a soap box stance about the words “I don’t want to give up.” What does that phrase really mean and what do we really have control over? For the past 3 years I have been blessed to work beside the best palliative care physicians in my eyes. They have taught me the true meaning of the words palliative care and it doesn’t have to be coupled with end of life or those dreadful words “give up.”
When you are running a race and your legs are burning, you stop on your own free will because the lactic acid is causing muscle cramping, burning, fatigue and pain. Then we can try again another day, maybe with the focus on “what is the real goal?” Is it to build more muscle to become an Olympian, to stay in shape, or just to improve on personal goals? Whatever it is, YOU have control over this to push on and not give up. The same goes for starting an education to improve your skills and find a better career. It will be hard and you will think about giving up but you will continue to push yourself because you have control over the situation.
In my line of work with cancer patients, they have taught me strength, courage and most of all faith. Our goal as the palliative care team is to find out what the patient’s absolute end goal is, and is it attainable? A patient that has stage 4 lung cancer has been diagnosed with a cancer that is termed “incurable.” So does that mean if they die from this cancer they gave up or didn’t fight hard enough or didn’t have enough faith? I think only you can answer that question. But let me remind you that stopping a race because your lactic acid is burning the living heck out of your legs, and you can no longer keep up in school anymore, is something YOU have control over. When a cancer decides to take over despite the heart and soul your oncologist has put in your treatment plan, and all the faith you have given to eradicate this cancer, this is NOT a definition of giving up.
I have met patients that have “towed the line.” They ate right, exercised, never smoked and all around took excellent care of themselves and still got the dreadful “C” word. Then on the flip side, people that lead a very unhealthy lifestyle also get the “C” word. You see cancer is not biased, it doesn’t really care who it affects, or whose world it turns upside down and or bankrupts - cancer is not picky.
When patients are given the diagnosis of “incurable” cancer, the goal should be to find a treatment that will extend their life as long as possible, and also balance the side effects with their quality of life. Cancer treatments have come so far in the last 15 years. Most importantly, the oncologist and researchers are always creating new novel treatments to search for a cure or to extend someone’s life as long as they can while living with an incurable cancer. The palliative care team works side by side with the oncologist to make this happen. We rely on direction from the oncologist and the patient to direct us in their goals. Of course everyone wants the “C” word to be cured, but if it cannot, what is your goal?
Unfortunately, there might be a time when treatment is not an option anymore. You are so tired, the cancer is growing despite the treatment, and/or the treatment is taking all of your reserve energy away so that you cannot perform simple tasks. The risk is the treatment outweighs the benefits if the treatment is causing you more harm than good. If the side effects are just too dangerous or possibly even shortening your life, we look at you, the patient, to guide us on what YOU want for your goal. But NEVER should you utter the words, “Am I giving up?” Because remember that race you ran earlier and your legs were burning and you stopped? You had control over this situation. Unfortunately, cancer has its own plans and doesn’t play favorites, and sometimes it guides you to change your goal, not to give up.
Now your goal can be to live as long as you can while feeling halfway decent. So stopping cancer treatment and doing best supportive care—just treating the symptoms of the cancer does not mean you are giving up. Even going on hospice when your cancer has made a decision you do not agree with also does not mean you gave up. It means you had no control over the cancer’s stupid decision, but you do have control over how you look at stopping treatment. This is different for everyone. So if this is you, please don’t say “but I don’t want to give up.” Please dig deep and find out what is really important to you and share this with your family, let them know, that you are not making the decision to stop treatment. The stupid cancer has made this decision for you.
I will leave you with, taking off the burden of giving up and putting it on the shoulders of cancer NOT you!
Amy Velasquez RN BSN Palliative Care Nurse Navigator for the University of Kansas Hospital Annette and Richard Bloch Cancer Center. Amy loves nursing and her hidden talents are triathlons and painting landscapes.