'Atlas' Uncovers Hidden Parts of Cancer Care

Lidia Schapira, MD


January 16, 2020

In contemporary cancer care, it can be easy to overlook that our patients' health is shaped not just by doctors, nurses, and other professionals directly involved in treating their disease. Patients also increasingly rely on networks of informal caregivers who volunteer in numerous and crucial ways, including organizing their appointments, providing assistance with the physical tasks of daily living, and mitigating the isolation and fear triggered by a life-threatening illness.

How do you capture the value of such a vast, but often hidden, component of contemporary healthcare, not only in purely transactional terms but also in its full human scope?

For Rajiv Mehta, the founder of Atlas of Caregiving, the answer is simple: You put it on a map—specifically, one that offers a visual representation of everything involved in a patient's care.

What Does an Atlas CareMap Entail?

Mehta began his career as a research scientist at NASA, after which he spent years leading innovation in technology and business development at successful companies. He then became interested in applying his skills and training to help individuals to visualize, understand, and then take action to strengthen their loved ones' ecosystem of care. Since 2016, Atlas of Caregiving has done just that by directly teaching hundreds of people how to make use of their Atlas CareMap.

The process involves three easy steps.

First, the patient identifies caregivers. The working definition of caregiving is everything a person does to assist a relative or friend who is dealing with illness, disability, injury, or frailty.

Second, the patient draws a personal map, an example of which is shown in the Figure. Although a Web-based app can be used, Mehta recommends starting with hand-drawn maps where stick figures represent each person. The process requires that the patient identifies the key actors—people, pets, professionals, and places—that are important in the individual's and family's care. Then the patient draws links using arrows that connect the actors with different types of lines indicating the frequency of contact. Long-distance relationships are placed at the periphery of the map to indicate their geographical distance. Seasonal differences are also important to acknowledge (eg, summer schedules may be different for a patient with young children). This process leads the patient to see that people can simultaneously be caring for themselves, caring for others, and being cared for.

The third step is for the patient to study the map and reflect on the actors and links, the nature of the interaction, and what has possibly been overlooked or is missing but needed. Visualizing on a map makes it easy to spot gaps.

Figure. Christi's Atlas CareMap shows the many caring relations that exist within her family, who are spread out in different parts of the United States.

Mehta warns users not to jump to action but instead to use the exercise to ask important questions, such as why certain actors are not involved or what aspects need to be changed or strengthened. A map also may show that the patient feels disconnected or unsupported by the professionals involved in their care (eg, doctors, nurses, therapists) or, conversely, dependent on them.

Bringing Maps to the Clinic

Imagine a clinical scenario like this: A 70-year-old retired engineer with mild Parkinson disease and diabetes is referred for treatment of a newly diagnosed aggressive lymphoma. His wife died of ovarian cancer a year ago and his adult children live hundreds or thousands of miles away. He has a supportive network of friends, but there is concern about his ability to remain independent during and after cancer therapy.

Drawing a map would give him, his family, and your team the information necessary to learn who is indispensable and what happens when they are not available. At a glance, you would all see the different kinds of support and skills that people can provide; how responsibilities could best be divided among them; and how key actors communicate, coordinate, and negotiate the issues of caregiving. It also may lead your team to identify the need for more professional services, and the members of your patient's family to spot what needs to change to allow him to stay safe during and after his treatment.

Caregivers Provide Valuable Connections; Let's Support Them

Moments of crisis, such as an illness, expose the value and need of connections.

I often find that individuals struggle to ask for help because it shatters their internalized ideas of self-worth at a time of vulnerability. Accepting the need for care from professionals or family may be one of the most difficult aspects of being a cancer patient. For their part, both novice and experienced caregivers perform at their best if they feel connected, with clearly defined roles and tasks. They will need guidance from professionals and probably training in handling medical devices or dosing medications.

One of our greatest clinical challenges is to teach patients to anticipate and prepare for the need to receive care, and to engage families and communities in that care. But caregiving is often mutual and a source of meaning that provides psychological benefits.

Mehta's work with hundreds of families taught him the importance of communication in mobilizing families and friends and engaging them in care. He speaks of "transformative conversations," a phrase that reminds me of grassroots efforts to talk about end-of-life care preferences. Maps open the door to these conversations that lead to understanding, appreciation, and support.

Lidia Schapira, MD, associate professor of medicine at Stanford University School of Medicine and director of cancer survivorship at the Stanford Comprehensive Cancer Institute, specializes in the care of women with breast cancer and of all cancer survivors. Her clinical research is dedicated to improving quality-of-life and health outcomes for people living with cancer and their caregivers.

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