Fundamentals Of Cancer Center Design: The Patient
It isn’t a desirable expansion, yet the number of cancer patients in the United States is growing. According to the Centers for Disease Control and Prevention, cancer accounts for approximately 580,000 deaths annually in the U.S., second only to heart disease (approximately 600,000 deaths).
The National Institutes of Health reports these significant facts:
- Fifty percent of all cancer patients receive chemotherapy
- There will be 18.1 million cancer survivors in 2020, 30 percent more than in 2010
- The annual cost of cancer care is $157 billion (in 2010 dollars)
- Growth and aging of the U.S. population are the primary causes for increases in cancer.
More than 1.6 million people are newly diagnosed with cancer every year. However, cancer diagnosis, once synonymous with a death sentence, is evolving into focused disease management.
As mortality rates trend downward, the number of cancer survivors increases. With medical and technological advances, more cancer patients are living longer. As hospitals and caregivers treat greater numbers of chronic cases, facilities that respond to the unique requirements of cancer patients become essential.
The increasing number of cancer cases has triggered a two-fold increase in the number of specialty treatment and care centers, both inpatient and outpatient, over the last decade.
Some consider cancer center design the same as any healthcare setting, utilizing a traditionally methodic design approach driven by function and operations. While functionality is essential to any healthcare environment, buildings that provide cancer care must encompass characteristics that address the distinctive aspects of the cancer patient and the care team, which are both unique.
In addition to meeting the functional healthcare requirements in a specialty cancer treatment center, the answers to the following questions should be an important part of the design process:
- What makes the cancer patient unique?
- What makes cancer care distinctive?
- What are the needs of specially trained caregivers?
- How can the physical environment support the needs of patients, caregivers, and family members?
- How can the design support the focused efforts for both cancer treatment and disease prevention?
- How can we incorporate the latest technologies, new medicines and advanced research, and specialty treatment?
Paramount to success in creating uniquely responsive cancer care environments, designers must remember that the spaces and places created are ultimately for the people who inhabit them. Understanding and empathizing with these constituents is vital for the design team to create a responsive and supportive environment.
The cancer patient
Every cancer patient’s journey is personal; no two patients or diagnoses are exactly alike. The disease has no bias as to age, ethnicity, or gender. In its many forms, cancer can have a catastrophic effect upon normalcy and daily life for individuals and families impacted by the disease. However, many cancer patients do share similar treatment experiences that include an array of physical trials, emotional challenges, and spiritual journeys.
As designers, it’s important to understand the complete spectrum of journeys that cancer patients experience, to gain true empathy that informs the design of environments to more effectively support the cancer fight. With deeper understanding, we increase our ability to design uniquely responsive places that have the potential to aid the healing process and to provide a place that reinforces respect, dignity and security.
Physical attributes of the cancer patient receiving infusion
Many patients receiving infusion treatments also have or will experience surgery and radiation. The cumulative result of these invasive treatments takes a toll on patients physically and reduces their sense of well-being. These treatments often cause weakness and a compromised immune system. Susceptibility to viruses, flu, and seasonal colds increases and can disrupt the healing process and lessen the ability to fight the cancer.
A cancer patient’s new state of normal can result in an overall feeling of sickness, similar to flu symptoms. Treatments, and even pain medications for intermittent or chronic pain, can also cause them to feel perpetually nauseous and trigger gastrointestinal issues. This may leave patients vulnerable to uncontrollable accidents, increasing their levels of stress and anxiety.
Changes in physical appearance are a common result of chemotherapy and other cancer treatments. Many patients experience hair loss, scars, skin changes, weight loss or gain, sensitivity to smells and temperature, and loss of muscle tone, creating limitations in activity and altering familiar daily life.
Furthermore, patients are often burdened with the financial impact of treatment. This additional challenge can increase mental stress, causing physical fatigue that may influence their ability to heal, or even make decisions about the course and/or frequency of treatment.
Psychological/mental attributes of the cancer patient
In addition to the impact of cancer treatment on the patient’s physical state, it also can affect their mental and psychological makeup. Furthermore, the journey can create an emotional roller coaster, with peaks and valleys of personal progress and setbacks. These ups and downs often lead to a general sense of losing control. The dual challenges of battling a disease that has overtaken their body and not knowing the outcome of their personal battle often leads to emotions of fear and uncertainty.
Regardless of the catalyst, mental fatigue is a common issue. The cancer journey can also result in a degradation of a patient’s dignity. During treatments, evaluations, and consultations, they repeatedly have to undress and gown, resulting in unwanted revelation of their bodies to staff and family members. Surgery and radiation treatments can leave scars and skin discoloration; their presence and exposure often lead to embarrassment and shame. Many patients struggle with the overall lack of privacy. Being exposed, probed, prodded, studied, and examined becomes par for the course and can be a difficult adjustment.
Short-term memory loss or experiencing general fogginess is frequently reported as a side effect of many treatments. This is often attributed to a combination of the side effects of the medication and the mental strain of fighting a disease that disrupts their normal life.
Pride and independence are also disrupted. Patients, once nurturers or caregivers, find themselves seeking help due to their lack of health and well-being. They can be faced with guilt because they have to rely on others for care and assistance with simple daily activities. This aspect of the journey also compounds their “loss of control” feelings.
Patients are hungry for information. One way they cope with loss of control is to learn as much as possible about their disease and treatment. This enables them to stay knowledgeable so they can have engaged and informed conversations with their caregivers. New information could perhaps help them find other ways to gain some control and cope with their disease and changing condition. At the same time, the complexity and overwhelming volume of information available online can be daunting. Face time with expert oncology caregivers is invaluable in identifying credible resources.
More than any time in their lives, the burden of cancer and the imminent fight can weigh heavy on one’s psyche, leading to sadness and depression. To face these challenges, patients have a deep need to stay positive and find purpose. Positive focus, inspiration, connection, and introspection provide opportunities for renewed hope, uplifting en
ergy shifts, and rejoicing at milestones and small breakthroughs along the journey.
Spiritual attributes of the cancer patient
Walking the tightrope of cancer treatment requires a safety net of family, friends, caregivers, and, for many individuals, a spiritual footing. While not all patients believe in a higher power, it’s essential for them to find solace during their journey. Support from and connection to others and/or a higher power can assist them in finding comfort and a reason to fight the fight. This daily battle often spans many months or years. If the patient feels supported and stays positive, the overall result can enhance their ability to heal.
Designing environments for the care and treatment of people with cancer requires a holistic and sustainable approach, encompassing empathy, operational knowledge, and creative design thinking from the architects, interior designers, engineers, and client team. This includes addressing the many complex layers of issues and factors that must be addressed to design an effective and responsive cancer center—many of which will be explored in this series.
In the next installment, we’ll define the role of caregivers in the cancer center environment as well as their unique needs.
Jason Schroer, AIA, ACHA, LEED AP, is cancer center practice leader and associate principal at HKS Inc. He can be reached at [email protected]. Carol Kartje, AIA, IIDA, LEED AP, is a cancer survivor, interior designer, and associate principal at HKS Inc. She can be reached at [email protected].
This is the first part of Healthcare Design’s four-part special report on cancer center design. Read the second installment, "Fundamentals Of Cancer Center Design: The Caregivers".