I am enthusiastic about this 6-part series titled Conquering the Cancer Care Continuum. Each edition of CCCC will address an important topic in oncology management and offer expert stakeholder commentaries. Topics will include: palliative care, pain management, hospice care, comprehensive treatment planning, survivorship care, and the role of biosimilars in supportive care. In this issue, we address palliative care.
Palliation in cancer care is a topic that commonly makes people (medical providers as well as patients) uncomfortable. I recently had the opportunity to speak with members of our palliative care team at Johns Hopkins and learned that the word “palliative” comes from the word “palliare,” which means to disguise or cloak. Centuries ago, this word was used for the drapes that covered a casket. Although we continue to drape coffins—most memorably with the flag—the drape is no longer referred to by this term.
The World Health Organization modified its original definition of palliative care as follows: “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” (http://www.who.int/cancer/ palliative/en/).
For too long, however, the image of palliative care has been tied exclusively to end-of-life care and focused solely on pain control.
The articles that follow provide a clear understanding of the intent of palliative care today, with the primary goal of ending its identification solely as cancer care provided for the dying. Instead, palliative care should be associated with quality-of-life care for all cancer patients and survivors, no matter what their clinical outcome.
Your cancer patients may not tell you about the side effects of treatment they are experiencing or about their discomfort due to their cancer diagnosis or its treatment. In many cases they may simply assume that the discomfort “comes with the disease.” However, with the improvements in medicine and the power of science, it doesn’t have to anymore. Do not wait for your patients to initiate a discussion about their symptoms; be proactive and initiate this discussion at the time you are planning their treatment. Encourage them to tell you what side effects they may be experiencing so that you can take steps to diminish them. You can also be proactive in the prevention of side effects, such as nausea and vomiting, by prescribing antiemetics before symptoms ever start.
There is not an abundance of palliative care medical experts despite the fact that the need for their expertise and counsel continues to grow. This results in the need to educate more oncology specialists in palliation as well as to turn to physician extenders who can assume responsibility for addressing the quality-of-life needs of our patients.
Recently, I arranged for my own father to have a palliative care consultation. He has been living with metastatic cancer for many years and had developed acute pain symptoms due to a T5 fracture. I knew he would be a “no show” if I told him that I was arranging for him to see the palliative care team, so I told him that I had arranged a meeting with our quality-of-life coach and the coach’s team. He came. He was asked to name the 3 things that give him the most joy in life, and those 3 things became the shared goals of the quality-of-life team. Amazingly, through their effective interventions, in 2 weeks he was back out on his John Deere tractor (one of his 3 joys). He certainly did not associate the palliative care team with end-of-life care.
I look forward to the day that I can comfortably say to a patient, “We have arranged for you to have a consultation with our palliative care team” and not have the patient equate this statement with “You are going to die of cancer,” when in fact, they may not. We have a long way to go to change this perception. It is my hope that after you read this supplement, you will begin helping the patients you care for experience the benefits of palliative care so their cancer treatment can be the least physically and emotionally burdensome possible.