Patients’ and Caregivers’ Perspectives on Cancer Care
In a first-of-its-kind study, a team of oncologists at Palo Alto Veterans Affairs Health Care System, Stanford, CA, interviewed patients with cancer and caregivers about their views on cancer care, and what improvements are needed.1
Manali I. Patel, MD, and colleagues interviewed 75 patients with cancer and 45 caregivers at 5 sites across the United States, including private oncology practices and academic cancer centers. English-speaking patients aged >18 years who had received cancer treatment for ≥3 months, and their caregivers, were eligible to participate. The interviews included open-ended questions, such as:
- “What kind of services were you getting to help you?”
- “How would you improve current care delivery? Why?”
- “Can you describe how you made decisions about your care?”
- “Can you describe your experiences and the type and level of support you had during your care?”
“Patients and caregivers expressed concern about coordination and reported consistent difficulty with scheduling appointments, obtaining health records, insurance authorization, and disability,” noted Dr Patel and colleagues. The 4 areas in cancer care delivery that are in need of improvement are:
- Physician–patient communication
- Discussion of prognosis
- Care coordination
- Access to site of care.
Of these 4 areas, communication between patients or caregivers and healthcare providers was reported as deficient by 92% of patients and by 100% of caregivers. Specific areas that need to be improved in the communication with oncology providers can be gleaned from the following examples cited by patients and by caregivers.
“My doctor sees patients once a week. They can get really backed up and if there is even a slight delay in the schedule, we are all delayed….There is really too little time to discuss all the things we want to and need to.”
“I felt rushed through all the appointments. I spend over three hours waiting and all I get is a hurried visit where I feel like I am just another cancer patient. I don’t relate to my doc at all. I don’t expect that much anymore except having to wait a long time.”
“I heard cancer and it was Charlie Brown’s teacher. I speak English but I wasn’t hearing what the doctor said. There was so much information. There wasn’t enough time.”
“I want to ask, like, do I need to get my affairs in order. Am I going to die? You want the doc to bring it up almost so you don’t have to. But when he don’t, then, it’s on us to ask.”
“My husband had uncontrollable pain, excruciating, really. I called the cancer center multiple times for over a week but no one ever returned our call….I ended up having to take him to the urgent care clinic and he got admitted which was really not what he wanted at all.”
“My family speaks English but my father did not….I don’t know many of the words and we don’t know how to translate or whether father really understands what we are saying. Heck, I don’t know if we understand what we are saying.”
“We try to not call the office…only when we need to…but we feel like we need to talk to someone but don’t want to be those problem people who call all the time.”
The inability to get answers to their questions—from “How sick am I?” to “Should I stop exercising?”—is very frustrating for patients and has profound implications on their care. For example, poor communication renders decision-making about treatment options difficult, and limits the ability of patients to understand the consequences of the specific treatment they ultimately choose.
The volume of information presented to patients can also be a hindrance to clear channels of communication; another common complaint is the insufficient amount of time given for patients to discuss all their concerns.
Inadequate Discussion of Prognosis
Frank discussion of a patient’s prognosis (ie, getting a clear answer to “How long do I have?”) is another area in cancer care delivery that patients pointed out as deficient. Discussing prognosis was mentioned by 80% of patients and 95% of caregivers. Many patients reported that they did not understand their prognosis, but they were hesitant to ask for clarification or to bring up the subject because they didn’t know how to do so. Some participants did not want to bother or appear to second-guess their oncologist.
“I didn’t know how to bring up the important stuff, like, you know, how long do I have….My doctor didn’t bring it up either so I never know if I have a long time or short time. I want to bring it up but don’t know how,” related one patient.
Other patients and caregivers felt that the discussion of prognosis was handled well. “My mom’s doctor told us her prognosis on the first day. It was clear. We had somewhere between 4-6 months….But, we knew she had limited time and it made it easier…once we could talk about all that hard stuff that we had been avoiding,” said one caregiver.
Care Coordination Lacking
All patients and caregivers said that the lack of treatment coordination made cancer care difficult. With chemotherapy given in one location, radiology in another, and laboratory testing in yet another, one patient was confused as to how to schedule everything. Even when treatments took place at the same location, scheduling everything was frustrating.
“The doctor told me I needed to come for chemotherapy but then I had radiation too but my chemotherapy was so long that I missed the radiation….You would think the people making the appointments would know….It’s the same clinic,” said one patient.
Inconvenient Access to Site of Care
Overall, 60% of patients and 55% of caregivers reported that the location of care services was inconvenient. This concern was mainly among those who lived more than 30 miles away from their providers or the service location.
“The clinic is really far from my apartment,” said one patient. “It is hard to get there and I need someone to drive me. I wanted to stay home a lot but I know that every Monday I am going to be at the cancer center all day.”
In addition, riding in a car can provoke symptoms, particularly nausea and vomiting, in some patients.
Suggestions from Patients and Caregivers
“Our findings reveal opportunities for improving cancer care from patient and caregiver perspectives and suggest that incorporating nonphysician health personnel into cancer care delivery is not only acceptable but also a patient-preferred solution,” noted Dr Patel and colleagues.
One way to improve communication is for cancer centers to include a nonmedical professional whom patients could contact, such as a community health worker or a patient navigator.
“If I had someone else to call, someone that wasn’t as busy, it would be easier for me to call and ask all the questions I have,” said one patient.
Another patient said that she wanted someone to speak on her behalf. “I just felt like sometimes I wasn’t being heard. I wanted a safe place with time to talk about these things….So, yes, having someone like a nondoctor would help me to talk about these things without feeling rushed and in a safer place.”
Some patients feel more comfortable talking with a nonphysician than a physician. “I did okay with knowing I was dying. I am ready….I didn’t know how to break the news to my children and no one told me how to do this. It would help to have someone like a nondoctor person to help with this,” one patient said.
Other solutions included receiving care at an infusion center in a community-based location and home-based treatment. Privacy concerns and difficulty leaving the home and traveling to a care center were reasons why having treatments at home was appealing. Still, there were those who found going to a location for care to be beneficial.
“I look to talk to others in this waiting room. I have made a few bonds and we listen to each other here. The support piece is important and is why I go there. I don’t think I would want it at home all the time,” said one patient.
Alternative Modes of Communication
Finally, 100% of patients and caregivers said that contacting a doctor via phone, text, or e-mail was a practical solution to the communication gap. Patients reported that contacting their doctor by phone to manage symptoms was a positive experience. E-mail was useful as well. “I live a ways from the clinic and email my doctor about symptoms. It’s a convenient way to get my needs met,” noted one patient. Visiting websites to research their cancer and symptoms provided personalized information for some patients.
“To our knowledge…our findings represent the first study to assess patient and caregiver perspectives on current cancer care delivery and opportunities to inform cancer care redesign,” observed Dr Patel and colleagues.
“As clinicians, researchers, and policy makers consider ways to radically transform our cancer care delivery system, the perspective of families and patients is critical to ensure the design of a system that meets the needs of these stakeholders.”
- Patel MI, Periyakoil VJ, Blayney DW, et al. Redesigning cancer care delivery: views from patients and caregivers. J Oncol Pract. 2017;13:e291-e302.