Improving The Cancer Care Journey
According to the World Health Organization (WHO), cancer is the second leading cause of death globally and was responsible for an estimated 9.6 million deaths in 2018. However, according to the 2018 Centers for Disease Control and Prevention reports, with more access to high-quality healthcare in the United States, the rate of cancer deaths is expected to keep going down.
Cancer medicine is changing every day with technological advancements that improve accuracy and speed of diagnosis, aid clinical decision-making, and lead to better health outcomes. Future cancer care facility design will be driven by these changes as well as emerging models of cancer care delivery and the involvement of patients and providers.
Today’s cancer patients are playing an important role in the decision-making process and require a personalized treatment plan specific for their unique and complex medical conditions.
Also, cancer care facilities are trying to attract the best doctors to support a collaborative, coordinated, and team-based care model.
Results from a 2019 cancer patient survey of more than 1,200 patients conducted by the Advisory Board (Washington, D.C.), a healthcare consulting firm, show that convenience and coordination are of the utmost importance as patients prefer multidisciplinary care clinics and collocation of all services in one building.
(For more on designing for cancer care, visit Healthcare Design’s Cancer Care Projects page.)
Cancer care research study
In 2020, HMC Architects (San Francisco) conducted a cancer care study to understand the patients’ journey by identifying opportunities to enhance their experiences and to implement lessons learned into cancer care facility design and delivery process. The study implemented user experience mapping, a methodology to visualize the entire user experience, to understand a cancer patient’s journey.
Utilizing a snowball sampling method, a non-probability sampling technique commonly used in qualitative research, colleagues at HMC Architects who went through cancer treatment themselves or with their family members were invited to participate and tell their stories. Twelve individuals agreed to participate in the study, as well as a cancer care provider who went through this journey twice himself and a cancer care researcher who formerly worked at Cleveland Clinic.
The survey questions were organized into five major stages of care including diagnosis, treatment decision, active treatment, and management and follow-up/end of life (if applicable). Questions were mainly asked about participants’ feelings, assessments, and actions during each stage of care, along with their perspectives on how different touchpoints including people, places, and technology impacted their experiences.
Participants were also asked about any changes that could have improved their experiences and made their journeys smoother and more bearable. Narrative analysis was used as one of the qualitative data analysis methods to organize the stories and experiences shared by participants in the sequence of different stages of care.
Study findings influence cancer center design
Findings from the study showed that cancer care is a long-term process with a series of phases. The components of care that patients need to access at a particular time will be different based on the stages they’re in and the treatment protocols and strategies they need to undertake.
The study shows that it’s crucial to locate resources in a way that makes them easily accessible over the continuum of care, but also easily accessible in the moment when they’re needed, such as locating the case manager’s office by the facility entrance to assist new patients to start their journeys, educate them about the process, and work as a liaison between patients and their providers. Services should come to the patient or be easily accessible for anybody, at any point in the continuum of care.
A cancer diagnosis can turn lives upside down, so understanding the complexity of the emotional and physiological changes that a patient goes through during their treatment is also key to designing a successful project. Space should be designed to be intuitively changed to meet patient needs and preferences at different stages of care. Using these strategies can help build a cancer canter with a comprehensive experience.
Designing an ideal cancer patient journey
Here, study findings, in the forms of lessons learned and opportunities to create an ideal patient journey, have been categorized in the sequence of different stages of care, including diagnosis, treatment decision, active treatment, and management and follow up/end of life:
Diagnosis: No matter how a cancer patient journey shapes and forms over time, it starts with a shocking, scary, and concerning moment. Diagnosis is usually a long process, with many steps in between; technology can assist to streamline this process. Providing spaces equipped with large screens and comfortable furniture to support consultation and education for patients and families about each step of the process can help alleviate their high levels of stress and frustration. Sometimes patients are more afraid of the consequences of cancer on their families, especially young children, so providing mental health support to families to give patients the mental space they need to focus on themselves is a key factor to improving their experience.
Treatment decision: In this phase, patients need the most direction and guidance to decide on their best treatment plan. Having a system in place to fully educate patients and families about the process and building a system of trust and honesty between the care team and patients and families are essential to give them the confidence and assurance they need to make the decision and move forward. It’s also important for patients to have a space to gather their thoughts after hearing hard news or receiving information that’s difficult to digest before heading back to the public and leaving the facility. This setting can be an enclosed room inside the clinic or a private outdoor space, ideally with uplifting features such as access to natural light, nature, and music.
Active treatment: This phase will bring a different experience depending on the type of treatment—it can be a one-time surgery, routine infusion, radiation treatments, or home treatment. To improve the patient experience at this stage, it’s important to look at the journey on various levels. On a macro level, patients greatly prefer a dedicated campus/building where they can receive all their cancer care services in one place. Their experience starts from the moment they drive onto the campus and includes deciding where to park or get valet service and finding their way in the campus as well as inside the building.
On a micro level, designing for personalization, such as the ability to adjust lighting, temperature, privacy, etc., can give patients a sense of control over the environment, especially for treatments happening on a routine basis. Making spaces flexible, through adjustable partitions and movable furniture, can address needs for quiet time and privacy as well as socialization and connecting with others. Amenities for families at the patient side (such as comfortable furniture, access to outlets and the internet to work remotely, and a nourishment station) should be included as well as health-promoting work and respite areas for staff.
Management and follow up/end of life: Finally, this phase considers how treatment fades over time after survival or how families and friends copy after the death of a loved one. With patients, families go through every step of the journey and need to be supported through mental health services. Cancer care facilities should be designed as a recourse center with spaces to support private and group counseling for families providing end-of-life care or enduring the death of a loved one.
Designing for cancer survival
Surviving cancer doesn’t mean the end of a patient’s journey. Survivors shared that one of their biggest fears is whether cancer comes back. To help alleviate some of that stress and fear, cancer facilities need to provide survivors with a sense of being connected, that there’s a system and technologies in place to track their future follow-up visits, check-ups, and diagnostic works.
Cancer care facilities of tomorrow are not just designed as places for providing cancer diagnostics and treatments, but also to foster physical and emotional wellness, not only within the building but also beyond its walls.
Adeleh Nejati, AIA, PhD, LEED AP, WELL AP, EDAC, is associate principal/vice president, healthcare planner and researcher at HMC Architects (San Francisco). She can be reached at firstname.lastname@example.org.