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Understanding the Cancer Caregiver: A focused and compassionate care team has proven to be one of the best remedies for patient recovery and healing. It seems obvious, but the opposite can have a negative impact on cancer patients and their experience and could deter the healing process. Surveys have shown that the perception of quality care is directly related to the interaction between patients and caregivers. Simply put, caregivers have a direct impact on patient experience; therefore, the needs of caregivers must not be overlooked.
In the cancer patient’s journey, many times the caregiver takes on the role of friend, coach and confidant and even becomes part of the patient’s surrogate family. Wendy Pajor, a recent cancer survivor said, “They (caregivers) are a rare breed in this field (at least the ones I had). Not only are they your caregiver, they are your cheerleader, sometimes your sounding board, your reality check, your teacher and your friend. They are a tremendous help in staying positive throughout the experience.” The caregiver work setting should not simply support their work functions, but also provide a supportive and positive environment that considers their unique responsibilities in a cancer patient’s journey, much of which requires an emotional investment of energy in the form of empathy and compassion for the patient and their family.
And, while not everyone believes in a higher power or shares a faith-based lifestyle, it also has been shown that those caregivers who do are likely to be happier and healthier. Those who have a spiritual life tend to rely on that to draw positive energy and hope. It is this energy and hope that can transcend the situation and create a positive interpersonal experience between caregiver and patient. The environment should be supportive of these interactions.
It is likely that a typical cancer patient will have a minimum of two physician specialists, and sometimes more. For each unique patient, the mix of cancer caregiving team members will vary and may include many different specialists such as surgical oncologists, medical (chemotherapy) oncologists, radiation oncologists, oncology residents, internists, physician specialists, physicists, oncology nurses, nurse navigators, nursing techs, radiation therapists, radiology technicians, physician assistants, pharmacists, phlebotomists, nutritionists, social workers, chaplains, psychotherapists, massage therapists, meditation therapists, researchers, geneticists and the patient’s family and friends. In general, cancer care treatment can be broken into three basic concentrated groups that include medical oncology, surgical oncology and radiation oncology. A fourth and emerging area is genetics, although treatments in this area are in their infancy.
An array of cancer caregivers are involved in the sequence of specific treatments and diagnostics that will vary for each patient. To establish the initial cancer diagnosis, exams and procedures may include ultrasounds, biopsies, surgeries, CT scans and more. When the treatment sequence begins, it may include a combination of surgeries, chemotherapy, radiation and/or other treatments. It must be remembered that any caregiver delivering a negative experience to the patient (either by bad attitude or disengagement) along this chain of treatment can disrupt the positive experience of the patient and, perhaps, increase anxiety and interrupt the healing process.
For high-volume cancer centers, the pace for caregivers is fast, so it can be tough to balance optimal patient-centered care and coordinated care, while achieving organizational performance expectations. Scheduling the first patient consultation visit after diagnosis can range from a few days to a few weeks, with each day of waiting increasing the potential for patient anxiety. Time with top oncologists and nurses is often at a premium and many see patients for exams and consultations only one day a week, while juggling schedules between surgery, inter-disciplinary coordination, tumor board meetings, teaching, training, research, intensive medical record documentation requirements and other administrative responsibilities. Simply put, not unlike patients, caregivers also have a fair amount of stressors themselves. The physical environment should be designed to support these unique needs andprovide measures that positively enhance their ability to offer supportive care – both physically and emotionally.
Cancer care is a specialty that relies on a multidisciplinary approach, usually including specialized physicians. A focused team of caregivers that communicate with each other, as well as the patient, can better formulate treatments that are customized to the specific condition and needs of each patient. Furthermore, a general understanding of the role of each caregiver will help inform facility design and planning.
Medical oncology (chemotherapy/infusion) team
For many cancer patients, the medical oncologist is the physician leader of the cancer caregiving team. They typically are involved in overall treatment planning, coordination of overall care, infusion (chemotherapy) treatment planning, pain and side-effect medication management, physical examination during clinic hours, consultation visits and medical record documentation and review. As part of the physician office/clinic experience, the medical oncologist may have a lead oncology nurse and be supported by partner medical oncologists and oncology residents.
Prior to establishing specific drugs and dosages for each chemotherapy session, the medical oncologist reviews a patient’s weight and phlebotomy lab results for that day. As part of the infusion/ chemotherapy experience, a nurse manager coordinates with the medical oncologist, lead oncology nurse and other caregivers on the team. During a chemotherapy session, a specific nurse is assigned to a patient to directly administer the chemotherapy drugs as well as anti-nausea and pain medications, and provide general care throughout the session. When chemotherapy drugs are delivered, frequently there are a variety of safety checks and balances, including having a second nurse verify correct drugs are being delivered to the correct patients, to prevent medical errors in drug administration. According to each patient’s wishes and hospital policies (and sometimes space constraints), family or friends may accompany the patient during the chemotherapy process, and visits from chaplains and social workers may occur as well.
Due to operational requirements of high throughput, working in a medical oncology environment also can be fast paced, allowing caregivers little time to rest. This can take a physical toll on them and even lead to injury. This is an area where good design and planning can really make a difference, which we will explore in in part 3.
The medical oncology team becomes the front line of cancer treatment. This team is likely to encounter patients more frequently, because of the regimen of chemotherapy, and therefore likely to form personal and emotional bonds with patients and families. It takes energy to offer emotional support to patients. When caregivers become emotionally drained, there is a possibility they will not be able to engage the patient and family with kindness and care.
Surgical oncologists and support team
Surgical oncology is an umbrella term that covers many different types of malignant neoplasms, their treatment and removal. Because tumors can occur almost anywhere in the body, many surgeons have special focuses depending on the location of the ailment. An example would be an oncology surgeon who specializes in thoracic, gynecological, otolaryngology, neurological or spinal cases.
The surgeon is usually one of the first physicians that a cancer patient meets. In the beginning, it is common for the surgeon to coordinate the team care with the medical oncologist and radiation oncologist, after an analysis and procedure have been performed. The information they gain, along with observation of the extent of the tumor and its attempted removal, plays a big part in determining the additional non-surgical treatments necessary to eliminate the malignancy. If a surgery is deemed successful, it is common for the medical oncologist to assume the lead, coordinating the post-surgery team care and treatment.
In general, the surgical oncologist and support team are similar to what you would find on any surgical team. Due to the nature of cases where tissue is removed, many surgeons are relying on technology within the surgical suite that provides radiological imaging to pinpoint the exact location of neoplasms. This requires specialty operating rooms called interoporative rooms, or hybrid operating rooms, containing imaging equipment in addition to the necessities of a surgical suite.
Radiation oncologists and support team
The workflow process within radiotherapy can have as many as 20 procedural steps, comprised of many players including the patient, nurses, physicians, technicians and radio physicist. The flow can be broken into three main categories: 1) imaging and fixation, 2) dose planning and 3) treatment. Typically, once fixation and dosing are established in a treatment plan, the patient needs to return only for recurring treatments.
It must be noted that radiotherapy environments traditionally have been harsh, due to the necessity of radiation shielding and technology of the medical equipment. These factors can reduce the opportunity to harvest natural light in treatment spaces. Additionally, research has shown that patient anxiety levels are typically highest during fixation – the period when the patient must remain completely still during radiotherapy treatment, frequently with the aid of devices that clamp the patient in position.
Much like medical oncology, radiation oncology staff are likely to encounter patients on a frequent basis, because of the regimen of treatment. Even though some treatments can last just five minutes, it is likely that the staff will form personal and emotional bonds with patients because of the frequency of visits.
Many health systems and outpatient facilities are adding nurse navigator programs with experienced oncology nurses, to help connect patients to information and resources for their cancer journey. The nurse navigator may become the point person for patients and families, helping them navigate myriad appointments and treatments and helping them manage and implement their care plan. Interactions with navigators can be very personal. Privacy in their meeting spaces should be considered, even if the interactions take place on the phone.
From a patient perspective, registered dietitians who specialize in oncology can be invaluable – from early in the cancer journey through the ups and downs of treatment side effects – in both inpatient and outpatient settings. They become a big part of learning healthy eating habits and can help patients manage the difficulties of nausea and lost appetites. Interaction between nutritionists and patients usually happens within the framework of a scheduled appointment and takes place in a consultation room.
Many patients take advantage of an array of support therapies such as meditation counselors, massage therapists and psychotherapists, to help with the challenges of treatment and as a physical and psychological uplift, either within the hospital or in outpatient settings.
Research and clinical trials
It is common for many cancer treatment programs and institutions to be establishing clinical trials and alternative treatments for new therapies. These often are an extension of research initiatives that are ongoing within the institution or framework of the hospital system. When cancer patients are involved in clinical trials, they meet regularly with research technicians as part of their overall treatment program. Additional space may be required within the facility to support these research encounters between patients and research staff. Privacy must be considered for these encounters.
Inpatient oncology team
Oncology patients are admitted to the inpatient setting for overnight stays for a variety of reasons, from surgery recovery to aggressively addressing side effects of treatment such as dehydration, pain management or infection, or for long-term chemotherapy treatment. While the patient’s primary oncologist oversees overall care and spends time checking in on the patient, the active daily medical care for the inpatient setting is referred to the physicians, physician assistants, nurses and nursing technicians responsible for the patient unit.
Designing environments for caregivers that enable them to provide a higher level of personal care to cancer patients should be at the forefront of any design. Considering the physical and emotional needs of caregivers, as well as their activities, will enhance the design. Cancer treatment can easily become about disease management and it takes a team of multidisciplinary specialists to treat each case – each individual person. The cancer patient’s journey is a series of touches and interactions, and each encounter should be deemed special. The environment should be designed to embrace and enhance these touch points, with the ultimate goal being to make the journey as bright as possible for caregivers and patients.
This article is dedicated to the memory of Carol Kartje, AIA, IIDA, LEED AP BD+C, associate principal and senior vice president with HKS, Inc. Carol, a respected designer, colleague and treasured friend, contributed a vital point of view to this series on cancer treatment while fighting her own battle with cancer. She lost that courageous battle on February 4, 2014. Carol believed that good design could make a difference, and her creativity and contribution to our industry will be greatly missed.