In the making a difference series, KCCure’s Director of Patient Engagement, Laura Loughlin, shares how connecting with palliative care improved her quality of life during radiation treatment, and explores how palliative care services can improve the quality of life for both patients and their families.
When I was first diagnosed in 2016 with stage 4 RCC an oncologist told me that from that point forward my life would be a series of choices balancing quality vs. quantity of life. When I was told this, I was hospitalized with side effects from my surgery and from high dose radiation to my thyroid due to a spread of the RCC. My quality of life was poor, and I was offered palliative care. At the time I was not aware of what palliative care was, but without a doubt palliative care become my lifeline. I was struggling with pain, exhaustion, difficulty swallowing and speaking as side effects of my radiation. I was also unable to finish my last four radiation treatments due to stress.
What is Palliative Care?
Palliative care is comfort care designed for those with a chronic illness. It involves treatments that help the patient improve their quality of life but are not curative. Palliative care focuses on symptoms of both the illness and of the treatments to improve quality of life. For example, a radiation treatment that reduces a tumor size and eases pain could be considered palliative if it does not cure the cancer. Or a nausea medication to help with treatment side effects would be considered palliative. Palliative care can often involve a specially trained team including doctors, nurses, pharmacists, physical therapists, social workers and spiritual support. The focus is not limited to pain management but to all aspects of quality of life. Both the patient and their families are supported.
Palliative care can also support your efforts to put an advanced directive in place. The advance directive includes things like living wills to specify your wishes should you be unable to, and a health care proxy to specify who you want to speak for you if you are unable. For advanced directives, the forms and document names can vary, as well as the state laws surrounding them. While difficult to consider getting an advanced directive in place early, it ensures your voice is heard related to your future treatment. It also helps your family as they have the comfort of knowing they are doing what you want. Advanced directives would not be used unless one’s capacity is lost.
When I met with the palliative care nurse, she listened to my goals such as being able to walk and to go home. I also needed a way to be less stressed during radiation treatments, so I could lay still on the table for them. Palliative care was able to address all my needs. They found a solution to relax me for the radiation treatments. Working with my doctors, they fine-tuned my medications to manage my symptoms at home. They provided me with information on local services that could help me after being discharged. Once I was discharged, I had phone access to the palliative care team. I had the option to set up appointments to be seen if needed. Being referred to palliative care is like being referred to a medical specialist. Coverage for costs would depend on what your health insurance offers. I am grateful to have had the support of palliative care during my radiation treatments. I was able to discontinue palliative care after I recovered from radiation.
Palliative Care is not Hospice
Palliative care is often confused with hospice, or end of life care. Hospice is a type of palliative care, in the sense that it also focuses on quality of life. But hospice is designed specifically for patients that have decided to stop treatment for their illness and are expected to have less than six months to live if their disease progresses typically.
Regardless of where you are in your treatment, or your cancer journey, there are palliative care services that can focus on your quality of life. Palliative care can be part of your overall treatment plan from the first day of diagnosis. In fact, studies have shown that initiating palliative care early in a cancer diagnosis can help prolong and improve patient’s lives. Explore what is available at your treatment center.
For me it made all the difference.