Giving cancer survivors symptom relief at any point after diagnosis
By Cara Tremols
It bears repeating: palliative care is not hospice care. Though the two medical specialties have a shared history, palliative care focuses on symptom relief for anyone with a severe illness. In contrast, hospice care focuses on symptom relief for end-of-life care.
In this way, palliative care complements the very core of cancer survivorship, which is to help anyone with a cancer diagnosis to live well after their treatment. It’s those physical, psychosocial and mental symptoms that palliative care seeks to improve.
“We know that the earlier palliative care is delivered from the time of diagnosis, the more it helps survivors and their caregivers,” said palliative care specialist Michael Huber, M.D., M.S.
Research shows that when palliative care is introduced early in oncology care, patients and their caregivers can experience improved quality of life, reduced physical and psychological symptoms, enhanced prognostic awareness and much more. But if you ask the average person about palliative care, they often will assume palliative means hospice. This misconception can even happen among oncology providers and prevent survivors (and others with severe illnesses) from receiving care that would otherwise improve their quality of life.
Dr. Huber explained that, despite the clear benefit when introduced early, many patients don’t receive it at any time in their cancer diagnosis, and those who do often receive it when they’re closer to the end of their lives, only furthering the widespread belief that palliative care is hospice care.
“It limits the full benefit that can be realized from receiving palliative care,” he said.
It also puts the burden on patients to advocate for themselves to receive palliative care. As an industry, it’s about changing the cultural perception of this kind of care, which takes time.
When can a cancer survivor get referred for palliative care?
Palliative care can be obtained anytime during a survivor’s health journey. You can be in active treatment or post-treatment. Palliative care helps you feel better so you can focus on living your life.
Think back to your own experience at the beginning of a cancer diagnosis. It’s an understandably overwhelming time. While your care was likely coordinated through your oncologist, a palliative specialist could be another advocate for navigating the medical system and speaking with other medical professionals who can relieve your symptom burden.
This question of “when a patient can/should receive palliative care” looms large in national discourse as medical institutions evolve their understanding of palliative care and the role it plays in cancer survivorship. To address this lack of awareness and understanding around palliative care, UHealth created a Palliative Care Task Force to educate providers about referring patients and patients about the care.
What kinds of care does palliative include?
According to Dr. Huber, palliative care provides quality care across many care domains, including physical, psychological, social, spiritual, legal and ethical areas. It also helps with care processes and care at the end of life. If you have pain symptoms, your doctor may recommend, in addition to different drug therapies, massage therapy or acupuncture. If you suffer from depression or anxiety, you may get a referral to speak with a mental health professional, but you may also get introduced to art or music therapy. Remember, palliative care aims to improve your quality of life, so your doctor may have multiple approaches to reducing your symptoms.
As cancer survivors, you’re acutely aware of how your diagnosis and treatment affect your quality of life. Getting adequate care for symptoms and pain management will require open dialogue with your palliative care specialist. The more information you provide your doctor with, the better equipped they will be to target your symptoms.
Do I need palliative care?
Whether you need palliative care or not is a personal question you should discuss with your doctor and your family. Consider the symptoms you may be experiencing in cancer survivorship that affect your quality of life. A palliative care provider can be a crucial representative for you to pinpoint your specific areas of concern.
Caregivers also greatly benefit from the added advocacy of palliative providers. It’s an additional means for the caregiver—and the survivor—to be heard, encouraged, and supported in a complex medical system.
Learn more about palliative care at the upcoming 3rd Annual Sylvester Cancer Survivorship Symposium Oct. 18 at the Ritz Carlton in Coconut Grove, Fla. Mariana Khawand-Azoulai, M.D., palliative care provider, will speak to caregivers and survivors about palliative care and why it matters.