Recap: Lost In Translation: Addressing Gaps in Communication Between Cancer Patients and Health-Care Providers
By Rethink Breast Cancer December 20 2018
On November 20, Rethink Breast Cancer invited a panel of health-care providers, patients and community partners to participate in a discussion about communication with their health-care team. Attempting to understand and search out all of the support and information needed while coping with a breast cancer diagnosis is daunting for anyone to bear. For young women who, in many cases, have had no or limited interaction with the healthcare system, the experience can be incredibly overwhelming. In addition to their diagnosis, they have many concerns: treatment options and treatment side effects, fertility, breast reconstruction, the disease spreading or recurring, concerns about childcare during treatment, the stress on family and friends, the challenge of returning to work and activities of daily living. We wanted to discuss how to better streamline communications and concerns for patients at every stage of the disease.
These were the top three issues that came out of the discussion.
The consensus from our panel was that a navigator role in hospitals would improve the level of care and communication patients receive during all stages and would have a significant effect on the health outcomes for patients and the health-care system overall. The consensus from our panel was that a navigator role in hospitals would help patients translate important treatment information, guide them through the transition of active treatment to the post-treatment phase (a time that is often fraught with side-effects and major emotional changes) and be a connector to support and resources outside the hospital. It was noted that this role could potentially reduce hospital visits and unnecessary appointments with the oncologist and be more cost effective for our health-care system.
The physicians on the panel felt that this role would also help them to use their time more effectively with patients since supporting the patient’s medical and psychosocial needs lead to better informed and more empowered patients with an increased understanding of their cancer and treatment plan.
Provinces such as Nova Scotia and Quebec have implemented navigation services for breast cancer patients broadly across their provinces. Currently, navigation services are not available in all centres in Ontario and we are wondering how we can advocate for that.
2A Communication Strategy for Stage IV Patients
Another important point that came out of our discussion were the unique communication, informational and emotional needs of metastatic patients. Often MBC patients are approached and given similar information as early stage breast cancer patients. If they have been re-diagnosed with a recurrence there is an assumption that they know “the drill” when in reality the diagnosis is completely different than the first time. MBC patients are having to reorient themselves to what metastatic means and the possibility of indefinite treatments, a huge financial burden, a shortened life-span, pain management and in some cases end of life care. We heard loud and clear that they need a different approach to communication, including a better understanding of palliative care. Most patients understand palliative care as end of life care, when in fact it is there to support their needs for better quality of life including pain management, psychosocial care and health programs. Rethink is committed to redefining palliative care and ensuring those with MBC are getting the information they need to make informed treatment decisions and get what they need to thrive.
3Second Opinions Count
One of the things that is not often communicated to Canadian patients is that you are entitled to another medical opinion. The doctors on our panel clarified that although patients are assigned a physician and treatment plan, they can at any time ask to be transferred for a second opinion or better fit to another physician. Why is this so important? Trusting your healthcare team is one of the biggest factors in fostering a positive relationship between patients and healthcare providers. When patients trust their doctors, they are more likely to ask questions feeling assured that the lines of communication are open. Patients often feel shy or sheepish about this request, but doctors should not take this personally if they are thinking about what the patient needs, and sometimes that assurance.