Receiving the treatment you need at any stage of cancer care is not as easy as simply finding a good doctor. Yes, you need one of those, as well as a good hospital, good support system, good insurance, good luck and an ongoing list that could probably fill this entire screen.
Once you’ve got all those requirements squared away, you might still find yourself unhappy with the care you’re getting. There is a chance poor communication is the culprit behind such a situation. I was reminded of that recently when I came across communication guidelines for oncologists published recently by the American Society of Clinical Oncology (ASCO) at http://ascopubs.org/doi/full/10.1200/JCO.2017.75.2311
Because the anxiety is high at most of my appointments — that happens when you have metastatic breast cancer — I know communication suffers. I want the results of any tests and, if they’re good, the truth is I can’t get out of there fast enough. Reading through the guidelines, which have been created for oncologists, not patients, it’s apparent that my desire to minimize the chance for any unpleasant conversation could be affecting my satisfaction with overall care. Ugh. That’s one more thing to be responsible for! Luckily, ASCO has practical step-by-step advice and strategies for the oncologists that we patients can steal.
If you haven’t been satisfied with the communication between yourself and your oncologist, these tips could help:
Establish goals for the conversation.
Have one to three goals/topics for the appointment and try to anticipate what information the oncologist may need from you in order to fully answer. If any of these topics really need to have a significant other present at the appointment, make sure he/she is there or find a way to let them participate (ASCO suggests the oncologist consider a teleconference).
Don’t ask “yes” or “no” questions.
ASCO recommends oncologists use open-ended questions to encourage sharing, and that’s something patients can benefit from as well. Who among us hasn’t wanted more information after asking a question about scans, for example, that can be answered with one word. For example, instead of saying, “So, the results look good?” you could ask “What most concerns you about these scans?”
Listen and repeat.
If you’re unsure of what the oncologist is saying, you can use a technique called “teach back.” Say something like, “So, what you’re saying is…” and then repeat back how you understand what you were just told. There’s so much information at some appointments, it’s easy to misunderstand.
Don’t keep secrets.
ASCO recommends oncologists “avoid unnecessary delays in providing information.” That’s true from the other side, too. If there’s something going on with your health, how you’re handling side effects, emotional issues or confusion from what other doctors are telling you, share that with your oncologist. Some information needs to be shared immediately, other information can wait for a scheduled appointment. If you’re not sure, err on the side of sharing sooner rather than later.
Be clear about what matters in your life.
Do you value quality over quantity? Do you want to be able to continue to work? Are you hoping to start a family? What is important to you should be important to the oncologist treating you, but you must be able to articulate what you most want. These goals can change, so keep your team informed. You also deserve to know if the oncologist is talking about a cure or prolongation of life or improved quality of life if you’re at that stage of care, ask for clarification if you need it.
Don’t leave an appointment without “next steps.”
This is especially true when we’re getting bad news. I want to get out quickly after good news, but my instinct to get away after bad news is even stronger. ASCO suggests oncologists pause in the conversation after delivering bad news and to encourage patients to ask questions. Similarly, patients can say, “Give me a moment to absorb this news” and then take that time to start to come to terms with how care may change and to form questions.
Understand the specifics of your treatment.
For example, get the names of the drugs you’ll be receiving, ask for any cancer subtype information, find out how often will you be in the clinic, if hospital stays be necessary, what are the likely side effects and are there methods to lessen them. If you’re not satisfied, ask about alternative options, including clinical trials and palliative care only.
Have end-of-life discussions.
ASCO recommends that oncologists talk about advance care planning within a month of diagnosis of terminal cancer. This is something a lot of us shy away from, but it can help us better understand our goals and values as far as treatment is concerned. Also remember, it could be subject to change over time.
Ask for help.
Grief, fear, anxiety—these are all common emotions with a cancer diagnosis. Ask for psychosocial support and/or contact information for local resources. Oncologists, their staff and hospital or clinic cancer centers frequently have someone on staff who can guide patients to the emotional care they need. If you can’t find information, organization websites associated with cancer often provide information and patient helplines.