Qualitative assessment of organizational barriers to optimal lung cancer care in a community hospital setting in the United States

Patient I was trying to figure out, why do I have lung cancer. Never smoked a day in my life.

Patients were often unaware of treatment options or side effects of various treatments. They relied on physicians to relay information and make decisions for them about treatment plans.

Patient I was told chemo would probably be the best thing for me, and I just had faith that Dr. xx knows more about it than me.

Patient I’m doing chemo but it’s — what I’m doing is different. Of course, I don’t know anything about it actually either. It’s what I hear from other people.

Other patients relied on their own sources for information about their condition, either through the Internet, from family members and/or friends, or from preconceived notions.

Patient Well — of course in the meantime, I read — because they said it was a small cell, very aggressive, so I felt like everything I read — that’s the deal. I think we’ve become where we can get on the internet and look up so much, that to me, I was gonna be gone.

Patient When he said, ‘Cancer,’ I said, ‘Well, I thought cancer was a heredity thing? That you have to have somebody in your family that has it…’

Discussion

Organizational barriers are an important consideration in the delivery and receipt of high-quality, patient-centered lung cancer care. This qualitative study of patients being treated for lung cancer and their informal caregivers revealed several common perceived organizational barriers to receiving care, including health insurance coverage restrictions, appointment scheduling difficulties, quality of communication with physicians, and failure to properly educate the patient and family about the disease and what to expect of the treatment process.

The provider communication and patient knowledge barriers seem to reinforce each other and could be improved through focused efforts on the quality of communication between patients and their caregivers and clinical care providers. Patients expect, but are often deprived of, open and active dialogue with their providers. Improved communication can be helpful in educating patients and their caregivers about their disease, prognosis, and treatment goals. Although communication ranks highly as a patient and caregiver priority, there is often a disconnect between patients and caregivers and their physicians.³¹ Patients and caregivers often want to be more involved in the decision-making process, and effective communication between physicians and patients has been linked to the patient’s ability to understand, and also receive high-quality care.^32,33 Failure to communicate effectively and educate patients on key aspects of their condition strips them of their autonomy in decision-making.

The involvement of a navigator for patients being treated for lung cancer could be pivotal in relieving the communication and scheduling barriers. The nurse navigator assists with coordinating effective communication and providing needed information between providers and patients and their caregivers. A navigator also serves as a single point of contact for patients and caregivers to communicate questions outside of physician visits or concerns that may not be urgent enough to warrant immediate physician response.³⁴ The navigator coordinates patients’ appointment schedules and physician referrals and communicates the details of the next steps in the care-delivery process. This helps remove the barriers to care and improve patient outcomes and the quality of health care delivery, especially for patients and caregivers dealing with a life-threatening illness within a complex referral process.³⁵

Multidisciplinary care, a much-recommended alternative care-delivery model, should, in theory, promote connectivity of providers and collaboration between providers, patients, and family members. This model could help reduce barriers for patients and caregivers.^3,24,36 A network of connected providers can better coordinate treatment plans, easily share test results, and provide built-in second opinions. Given the increasingly multimodal approach to the diagnosis, staging, and treatment of lung cancer, the multidisciplinary model could allow physicians to consider multiple perspectives and care-delivery options and, ideally, develop consensus around the optimal approach for each individual patient in one setting. This can shorten the length of time before treatment and establish a plan that is tailored to the patient’s needs.²⁴

The National Academy of Medicine (formerly, Institute of Medicine) proposes that modern health care systems have 6 aims for quality improvement: safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity.³⁷ It would take changes in the design and implementation of organizational support systems at the policy, institutional, and provider level for those aims to be achieved. Further investigation of the problems identified by patients and caregivers could lead to innovative solutions to improve lung cancer care. Future work should evaluate the most effective communication styles in patient-provider interactions, particularly in regard to to lung cancer diagnosis and treatment, and investigate how multidisciplinary models influence patient-provider communication and patient care.