You need to be sure the patient recognizes the distinction between palliative care and hospice care.… Palliative care should be viewed as an adjunct to treatment, not a replacement for it.
—Don S. Dizon, MD, FACP
For more than a year, Don S. Dizon, MD, FACP, has been blogging at ASCO Connection (connection.asco.org) about such diverse topics as cancer survivorship, the redesign of clinical studies based on patients’ molecular characteristics, and the power of laughter. Last May, Dr. Dizon tackled the impact that the use of particular words can have on patients with cancer, noting that if terms like “salvage treatment,” “treatment failure,” and “restaging” are not carefully explained, they can sometimes leave patients scared and bewildered.1
Dr. Dizon is a member of the Medical Gynecologic Oncology Service at Massachusetts General Hospital, Gillette Center for Women’s Cancers, Boston, and of ASCO’s Cancer Education Committee, and Immediate Past Chair of the Society’s Integrated Media and Technology Committee. His clinical and research focus centers on the treatment of breast and ovarian cancers, the development of novel therapies in these cancers, and survivorship issues, including the sexual health of female cancer survivors. He is also interested in the role that social media is playing in how information about cancer is disseminated, both to oncology professionals and survivors, and how critical it is for that information to be carefully communicated and monitored to avoid misinterpretation.
The ASCO Post talked with Dr. Dizon about the language of cancer and how, even with the best of intentions, the words oncologists use can often confuse and hurt patients.
What do you want oncologists to keep in mind when they are talking to patients?
When we are speaking among colleagues, we assume our lingo—the vocabulary of oncology—is universal, and we don’t give much thought to how what we’re saying can be interpreted by the layperson. The point of what I wrote [on ASCO Connection] is that the same information can be processed in very different ways, depending on the audience. What I’m hoping to do is heighten awareness that we as oncology professionals use words that can have dual meanings, and when you are dealing with a condition as serious as cancer, the dual meanings can confuse and scare patients, which is what we are trying to avoid.
A woman recently wrote to me through my blog and said that after being diagnosed with metastatic breast cancer, she was told she was going to be restaged. To oncologists, this means the cancer’s response to treatment would be measured and its status reevaluated. But when this patient heard “restaged,” she had a bit of hope that the diagnosis was wrong and that her oncologist was going to do another test just to make sure that she actually had metastatic disease. Here, the word restaging connoted very different things.
There are many ways we can create confusion when we discuss staging. We have to do a better job of explaining to patients that their prognosis is based on how they first presented. For example, we do not restage women who had early-stage breast cancer upon recurrence. Their original stage stays with them. To tell someone who was originally stage I at diagnosis, “You have stage IV disease,” isn’t the same as saying they were stage I but are now metastatic. Although most oncologists assume “stage IV” equals “became metastatic,” the same may not be true for the patient.
How do patients perceive the words “salvage treatment”?
When oncologists are looking at second-, third-, and fourth-line therapies, they are considering drugs that perhaps aren’t as effective as our first-line choices. This forces a shift from treatment with curative intent to treatment for disease stability and palliation. We may also contemplate drugs that will provide improvements in or at least maintenance of current quality of life vs exposure to different toxicities.
To me, when a colleague says a patient needs salvage therapy, it implies that we are not rendering treatment for cure or even looking for a response necessarily. Rather, we want to continue to treat and, hopefully, get the disease to stop growing and maybe make the symptoms improve or prevent new symptoms from developing.
However, when we use the term “salvage therapy” with patients, we cannot assume that they understand that we are talking about the drug. In my experience, some patients hear “salvage” and feel it is referencing them as the “thing” to be salvaged. Patients want to be cured, they want to be helped, but they do not want to, nor should they, think of themselves as being “salvaged.”
Should oncologists avoid using that kind of potentially confusing terminology in front of patients?
Not only should we avoid using that kind of terminology with patients, we should avoid using it among ourselves. We live in a tech-savvy world, and patients may see terms that can be taken curiously or offensively on Twitter, for example. Or they could be listening to a discussion on novel therapies in a lecture hall or viewing a video presentation online, and a term like salvage therapy may come up.
So I don’t think that terms like salvage therapy or treatment failure should be part of the vocabulary of oncologists in general. For certain, those words should be avoided in direct conversations with patients.
‘Incurable’ vs ‘Terminal’
Should the potential conversion of cancers into chronic illnesses be emphasized more in discussions with patients?
Absolutely. That’s a message we want to spread. There’s so much to be optimistic about in cancer therapy. The whole idea of cancer survivorship and the fact that the survivorship population is growing and will probably reach 18 million by 2022 means that we are making huge strides in cancer treatment. So, yes, incurable cancer is not synonymous with terminal disease. More frequently, it means chronic disease, which lends new meaning to the phrase, “living with cancer.”
We also need to be careful of terms like “war on cancer” and “losing the battle with cancer.” Many survivors are unhappy with the overuse of the war analogy in connection with cancer. Hopefully, in the future we will more often be approaching cancer as a condition, not a death sentence—or a war.
‘Palliative Care’ vs ‘Hospice’
The term “palliative care” is also loaded language that patients often equate with imminent death. How can oncologists reassure their patients that palliative care does not mean the end of treatment?
Separating palliative care from being an “either/or” to treatment or synonymous with hospice can help oncologists approach discussions with their patients when treatments have stopped working or when life expectancy is not going to be measured in years.
What I have taught my fellows to do in these circumstances is to be honest. If you think a patient is not going to do well, or if you are afraid that further treatment is not going to be of much value and will expose the patient to a lot of toxicity unnecessarily, the patient has the right to know that. One of the ways you can approach that conversation is to acknowledge what has occurred as forthrightly as you can and then explain that although there are still options A, B, and C, another option exists that can complement or replace standard treatment. This is where palliative care comes in.
Perhaps as important, you need to be sure the patient recognizes the distinction between palliative care and hospice care. Palliative care involves symptom management and is indicated for anyone living with metastatic or incurable cancer, regardless of whether chemotherapy or other cancer treatments continue. Palliative care should be viewed as an adjunct to treatment, not a replacement for it.
Introducing palliative care into the conversation might also give patients permission to ask the questions they are afraid to ask but want answers to, including “Am I dying” or “How long do I have to live?” When you introduce the term palliative care, it segues naturally into a discussion about prognosis. Then patients have a chance to adjust to the fact that time is finite, which is true for all of us, and that while it may be likely they will die of their cancer, we can’t put a date on it. ■
Disclosure: Dr. Dizon reported no potential conflicts of interest.
1. Dizon DS: The power of words. ASCO Connection. May 19, 2012. Available at https://connection.asco.org/. Accessed August 2, 2012.