In 2008, the Institute of Medicine (now the National Academies of Science, Medicine, and Engineering) released its influential report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, which called attention to the importance of the psychosocial needs of cancer patients and the consequences of these needs remaining unmet. The IOM report concludes:
Attending to psychosocial needs should be an integral part of quality cancer care. All components of the health care system that are involved in cancer care should explicitly incorporate attention to psychosocial needs.
Today, there is an increasing body of knowledge around this area, and organizations like the Commission on Cancer (CoC) and others are including distress screening as part of their guidelines and accreditation standards.
ACCC, along with its project partner APOS, identified three ACCC member programs that are serving as model sites for the “Psychosocial Distress Screening” project.
“I don’t know a single cancer patient who is not anxious,” says Jenn Paxton, LCSW, OSW-C, a social worker at Texas Oncology in South Dallas. Paxton, who meets with cancer patients from the recently diagnosed to those dealing with end-of-life issues, says accurate, empathetic communication that meets patients where they are on their cancer journeys is essential to providing quality care. Key to doing that is reinforcing health literacy by addressing patients with compassion, clearly communicating information about their disease and treatment, and ensuring they understand.
Often, patients’ and caregivers’ first impression of a healthcare team member is based in part based on their communication style. If patients perceive a provider as unempathetic, confusing, or even cold, they can quickly become removed and frightened. Trust is an essential part of the provider/patient relationship. When those relationships get off on the wrong foot, it can affect a patient’s entire cancer journey.
To help patients and providers better listen to, hear, and understand one another, cancer team members must recognize that patients may not always understand medical jargon, and they are certainly not prepared to decode it in moments of personal crisis.
Ask Me 3® is a tool developed by health literacy experts at the Institute for Healthcare Improvement that encourages patients to ask three simple questions—and urges providers to adequately answer them—each time they communicate:
As we all know, communication is a two-way street. ACCC worked with care team members at Texas Oncology to create a video that demonstrates how compassionate responses to patients’ concerns can engage them and promote effective communication throughout the care continuum. ACCCBuzz recently talked to Jenn Paxton about why Ask Me 3® is an effective tool for promoting patient health literacy.
ACCCBuzz: Tell us about yourself and where you work.
Paxton: I’m a licensed clinical social worker and an oncology-certified social worker. I've been with Texas Oncology for about two and a half years. I’ve been working in medical oncology social work for about a decade, including at Methodist Dallas and the American Cancer Society.
Here in South Dallas, our patients are often resource-limited, so much of my job is educating them about the resources available to them in the community. Our Texas Oncology team has a good understanding of the economic barriers that our patients face, so they refer them to me often. Our patients face issues with time off from work; paying for rent, utilities, and transportation; daily living expenses; and childcare—all of which are huge barriers to getting consistent treatment and having a good outcome.
ACCCBuzz: What is your role on the cancer care team?
Paxton: My team uses me to meet patients' non-medical needs. Consistency is key for medical treatment. When we have patients that don’t have PTO or time off, and they have long treatment cycles, they’re missing work, which means they’re missing pay. And if they’re living paycheck-to-paycheck, they now have to decide, “Do I want a place to stay, or do I want to have treatment?”
I work with patients to obtain tangible support, but we also have patients with psychosocial needs. Many patients experience distress when they are diagnosed. That can be increased by some of the things family members may tell them, or what they’ve heard at church, or what they’ve seen on TV. Some of them have difficulty knowing how to talk to their kids and how to communicate with their doctor about their diagnosis and treatment. I can offer patients short-term therapy/counseling, either one-on-one or with family members. My job allows me to meet patients where they are in their treatment, whether it be at diagnosis or end of life.
ACCCBuzz: How do you help patients communicate with their care team?
Paxton: Many times, patients come to me with questions that they haven’t asked their provider. So I work with them on how to best speak with their provider about their concerns, and I intercede on their behalf with the entire healthcare team. I think that I’m more accessible to them, so I can provide a link between them and their treatment team.
One of the things that I do is sit down with patients and help them identify and articulate their questions so they can get the most out of their appointments. Nothing is more frustrating than asking what you feel is a straightforward question and then getting an answer that doesn’t feel like it's anywhere in the ballpark of what you’ve asked.
ACCCBuzz: How do you help patients cope with their cancer diagnosis?
Paxton: I try to meet patients where they are. Sometimes we have someone for whom living with cancer is going to be their “new normal.” While their metastatic disease is not curable, it is treatable. In those cases, we focus on how we can help a patient process that information and learn to live for a long time while in treatment. And then for our patients for whom we cannot do anything, we focus on how we help them live well while dying.
ACCCBuzz: Why is health literacy important?
Paxton: I don’t know a cancer patient who is not anxious. They will often go online and see concerning or inaccurate information that people put out there. Building a patient’s health literacy helps them find the right answers to their questions or even formulate what questions they should ask.
Often when a physician explains things to a patient and then asks, “Do you have any questions?” the patient says, “no,” and then leaves. But they do have questions; they just don’t know how to ask them. I think having health literacy and being able to ask and answer your questions gives you confidence in your relationship with your care team.
ACCCBuzz: What makes Ask Me 3® an effective tool for helping patients increase their health literacy?
Paxton: I like Ask Me 3® because it’s very succinct and very simple. I think shared decision-making is often a big gap in treating patients with cancer, even with the best doctors. Patients want to know that they have control over what happens to their body.
It’s very difficult, especially with cancer, when your provider says, “You’re going to do this, and then you’re going to do that, and then you’re going to do that, and this is why.” I often talk to patients about how treatment is a team effort and why we have different modalities, such as radiation oncology, medical oncology, and surgery.
When patients have more information, they are more confident in making decisions. They are less rattled when people in their life try to intervene or make suggestions that make them uncomfortable. They’re more compliant with treatment. It’s very positive when both the provider and the patient and their family are on the same page.
ACCCBuzz: Is there a role for health literacy after treatment?
Paxton: Promoting health literacy is essential in post-treatment survivorship. Patients sometimes don’t understand that after they are treated for a specific cancer, they can still experience long-term side effects or develop a different cancer unrelated to their primary one. Many patients think as soon as they're finished with treatment, they're done. They’re not ever going to have cancer again. They also need to know what resources are available to them if they lose their insurance, change jobs, or move. They may need to identify new providers in the future. As a part of the survivorship team, I am able to speak to patients to help them understand what the next steps are after treatment ends.
Ask Me 3® is an effective, simple, easy-to-use tool, but it may not be enough on its own to increase patient engagement. Patients and staff need to be educated about the importance of maintaining open communication, asking questions, and refraining from assumptions or judgement. To learn more about the important role of health literacy in effective cancer treatment and to access additional tools to enable better patient/provider education, visit ACCC’s Health Literacy page.