Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
Palliative care doesn't mean giving up treatment, it means getting the support you need as a patient with metastatic cancer.
“The American Society of Clinical Oncology (ASCO) recommends that all patients with advanced cancer receive palliative care early on and along with cancer treatment. For those newly diagnosed with advanced cancer, the recommendation is that palliative care should be offered within 8 weeks of diagnosis."
The quote above comes from the ASCO Answers Palliative Care booklet, which is available in English and in Spanish. It would be difficult to be any more precise about what should happen with palliative care and the advanced/metastatic/stage 4 patient. It implies that if you are not "newly diagnosed" there is no better time for your oncology team to offer palliative care than right now.
However, whether you're newly diagnosed or not, palliative care can be misunderstood as stopping treatments intended to prolong life. I remember going online when I was first diagnosed with metastatic breast cancer, in search of something to help me deal with this unexpected diagnosis at what my oncologist called the "young" age of 50. One of the first things I found, on the site of a distinguished national organization, was a sentence like this: Treatment of metastatic breast cancer is palliative in nature.
That did not sound good.
I knew that palliative would come from the word palliate, which is defined as "to relieve or lessen without curing.” I can't speak for the estimated 154,999 other people living with metastatic breast cancer right now, but when I read those words, I went cold. I suppose it was an accurate sentence, but it was also misleading.
Maybe my oncologist hadn't read that same sentence, since it didn't take me long to understand that not only was my treatment plan going for broke, but palliative care was something that would supplement my treatment — not replace it.
This is so important for cancer patients to understand, but it's especially crucial for people with metastatic disease — and their doctors – to get right. Palliative care addresses the issues that run alongside cancer and its treatment, as though they were hunting down even the most resilient and positive person: pain, nausea, fatigue, fear, depression, anxiety, financial concerns, sexuality and body issues. In my ever-growing circle of friends with metastatic breast cancer, there are two camps: those receiving both treatment to slow the progression of the disease and palliative care, and those who are receiving treatment and wish/urge their doctors to put into action the guidelines that ASCO so clearly lays out.
The unfortunate truth is that, despite the prognosis for metastatic breast cancer, not everyone understands just how difficult it can be to cope with the emotional and physical side effects of the diagnosis in addition to those brought on by treatment. It's not always an oncologist's lack of empathy; I believe it is often a lack of time. Research indicates that palliative care specialists need about an hour a month with an individual patient to determine real quality of life and how best to move forward. That is time most oncologists just do not have.
Still, it's not right to always put the blame on lack of time. Honest and deep discussions about care are hard for both the patient and her team. Hospital administrators can make it difficult for doctors and patients to find palliative support, blaming financial concerns (although research has shown that palliative care decreases patient care costs) or misunderstanding what it means to live with cancer. Personally, I think it's easy to offer hope and treatment and ignore the very real but very difficult effects of metastatic cancer. But while hope is awfully nice to have, it doesn't do anything concrete for fatigue or pain, anxiety, grief, and financial fears.
The Center to Advance Palliative Care has a resource-packed website at getpalliativecare.org that has information about finding a palliative care specialist, including a tool that lets you put in your zip code to find the closest specialists, definitions of palliative care, and how to ask for it.
The how-to-ask guide echoes ASCO and the suggestions at other sites by starting with talking to your doctor about palliative care and accepting the idea that to get this care you probably have to be the one to bring it up. Referrals are likely necessary, but insurers frequently cover at least part of the cost.
At the recent ASCO meeting in Chicago, I was lucky enough to hear Andrea Enzinger, of the Dana-Farber Cancer Institute, speak about spirituality, which can be an aspect of palliative care, and--to my ears--the need for doctors to up their game. Enzinger is a medical oncologist with clinical interest in palliative care. To her, the goals of oncology are intertwined: "To support patients and provide appropriate care." I hope the rest of the audience was listening as carefully as the patients