Shortly after my diagnosis, a physician I knew socially said, “Call me if you have questions. I’m board certified in palliative care.” I was polite, but quietly took offense: how dare he tell me I was dying when he wasn’t even my doctor? Like many people, I had only ever heard the term “palliative care” in connection with hospice. I thought it meant keeping patients comfortable after they gave up on getting better.
Not long after that, though, Dr. Saraiya explained that he, too, is board certified in palliative care — and that palliative care doesn’t just mean hospice care. Palliative care, he explained, is treating a patient’s symptoms to help the patient feel better and have a better quality of life, regardless of what other treatment is or is not pursued. Essentially, any treatment not directly targeting the actual cancer is palliative care; that includes pain relief, psychological and emotional support, attention to your gastrointestinal health, and more. Palliative care can be offered together with treatments like surgery, chemotherapy, radiation, and genetically targeted medicine.
Getting palliative care from the very beginning of your treatment may not only give you a better quality of life, but also buy you more time on this earth with the people you love. From 2006 to 2009, physicians studied “early palliative care” – palliative care offered within the first three weeks of diagnosis – in patients with metastatic non-small-cell lung cancer at Massachusetts General Hospital in Boston. They found that lung cancer patients who received palliative care throughout their treatment, beginning within the first couple of months after diagnosis, not only had a better quality of life, but also lived longer. Even though patients in the palliative care group were less likely to choose aggressive end-of-life treatment, their median survival time after diagnosis was 11.6 months, as opposed to 8.9 months for the standard-care-only group. You can read the whole study here: http://www.nejm.org/doi/full/10.1056/NEJMoa1000678#t=abstract
In practice, Dr. Saraiya’s expertise in palliative care meant that every time I saw him, he not only looked at my CT scans, listened to my breathing, and thought about what clinical trials might be available for me, but also patiently asked me simple questions about things that may not be the most glamorous topics in medicine, but meant as much for my day-to-day well-being as the size of the hazy areas in my lungs. Did I have pain? On a scale of one to ten, how severe was my pain? Was I having normal bowel movements? How was my sleep? Was I able to work on my graduate studies, and teach? How was I doing emotionally? He never failed to ask about my daughter and my partner. From time to time, he reminded me that even though I liked to be very matter-of-fact and brave, it was all right to be upset, even to cry. Expressing my feelings might even help me sleep better.
Together, we fine-tuned my pain medications, making adjustments as we went along. I was nervous about compromising my alertness, but it turned out I didn’t actually need very much to take care of my pain. I was frustrated that I was so hoarse I had trouble speaking above a whisper; with Dr. Saraiya’s encouragement, I saw an otolaryngologist (that’s an ear-nose-throat doctor), who was able to determine that the cancer itself was not affecting my vocal cords, and adding an anti-reflux medication could relieve the irritation in my throat and help me talk normally again. Treating my pain and my hoarse voice had no impact on whether the cancer in my lungs grew or shrank; but those treatments made me much more able to function as a student, as a teacher, and as a parent.
If a doctor recommends “palliative care,” please don’t be scared! It doesn’t mean your doctor is giving up on you. It means he or she wants to help you feel as good as you can possibly feel, not only sometime down the road if you should decide to stop aggressive treatments, but also right now when you’re trying everything to beat back the cancer cells.
Note: Actually, if your doctor recommends palliative care, ask what your doctor means by that. If your doctor is board-certified in palliative care or refers you to someone who is, mentions the New England Journal of Medicine article, and/or explains that you can have palliative care concurrently with treatments aimed at stopping or slowing the cancer, then he or she probably means what I mean. It’s possible, though, that your doctor may not be educated about early or concurrent palliative care. So, be sure to ask questions.
Hey Beth, now days, most doctors know that palliative care does not equal no care, but quality of life care. Though some old school doctors still think it does. While hospice care is a part of palliative care, palliative care is really as you point out, all about quality of life, setting goals, making sure that important things are taken care of and making sure that you do not become just the patient with X. Thanks for sharing.
Yes, I agree… but just as I was getting ready to post, I thought, “What if someone with cancer is seeing an old-school doctor who still uses palliative care as a synonym for hospice? And what if that old-school doctor also doesn’t know about genetic testing?” Lately I find myself thinking that educating patients, especially to ask questions, is as important as making sure doctors have up-to-date information (perhaps a topic for another post).
Not to be old school . . . ok, I’m old school . . . I was reviewing the chart of one of my consult hospital patients just yesterday, who had survived and was slowly recovering from a horrible car accident, and saw that Palliative Care was involved, and my first thought was, “OMG, when did she start dying???” But it was the new kind of Palliative Care, and in fact they’d gotten involved the day she arrived at the hospital and continue to be involved in all kinds of ways I’d never even think of, and like you said, really helpful for the family too.
My sisters were actually kind of horrified for a moment the other night when I told them I was getting palliative care. I had to explain.
Beth, reading your posts has helped me so much. I lost a very dear friend a few months ago and had absolutely no idea how to help him, how to feel, didn’t understand what he was going through. He didn’t want to burden anyone and I couldn’t understand that – he never would have been a burden. But your posts have helped me understand better and accept that he had to go through his journey the way he needed to. I’ve learned so much from you and I know that when I’m faced with illness again – a loved one’s or my own – I am better equipped with knowledge and understanding because of you. What a gift you are giving to all of us who read your posts. I hope you are having a good day today. Thank you so much.