Patients have more information today about their diseases and treatment options than ever before. But patients have not had tools to help them decide among these various options, and doctors have not had tools to help gauge how acceptable an option might be to a specific patient. As a result, the medical decision made, in hindsight, may not have been the most suitable one.
Every year approx. 1.2 million people are diagnosed with Urologic illnesses in the United States. Urologic treatments often involve multiple options and specialties; which can be prolonged disease, costly, intense, and may involve serious long-term complications.
In addition, responses to Urologic treatments are quite variable, so predicting the potential risks and benefits of various treatment options for individual patients is often difficult. Because of the complexity of treatment choices, coupled with the life-threatening and its emotional repercussions, it is often difficult for people to make decisions about their care.
It might seem heresy to doctors to suggest that at times their care might not be patient-centered; after all, most advise patients on a daily basis. However, consulting with patients does not necessarily equate to patient-centered care – it is about more than working hard and doing your best. It is about how care is designed, outcomes measured, buildings constructed, and clinicians educated. In short, it is about changing the system.
Unfortunately, urologists are commonly preoccupied with striving to deliver better care within chaotic systems where patient-centeredness might be seen as a luxury, not a core goal of service delivery. This will have to change when patient-derived outcomes become paramount in validating urologists' performance. We discuss here how the constituent elements of patient-centered care might apply to urology.
#1. Access to Optimized Care
Patients tolerate delays that in most walks of life is considered unacceptable. Newly referred patients require rapid access to urologists. Patients should be seen in an environment that can deliver answers effectively and efficiently. Multiple visits over several weeks to resolve straightforward problems are wasteful, inefficient and the antithesis of patient-centered care.
Furthermore, attempts to be patient-centered by prioritizing one group is at the expense of another that is de-prioritized and receives delayed access. Patient-centered communication innervation on Urology patient care would give all patients equal access to clinics offering the maximum chance of a diagnosis in a single visit.
A truly patient-centered appointments system will allow patients to choose when and where they are seen. Using the patient's preferred method of contact for e.g. telephone, e-mail, text message in an appointments system characterized by 'contact and book' rather than 'book and contact' would seem ideal.
A major concern for patients, particularly after surgery, is the difficulty of re-accessing hospital systems once initial treatment is completed. The solution lies in prompt re-entry, which could be walk-in; direct contact by phone or e-mail, or guaranteed review in the following week's clinic.
Patients with chronic Urologic conditions have different needs. Rarely will face-to-face consultations with an urologist provide optimum care. Support groups, telephone consultations, or remote monitoring of blood results might more effectively meet the patient's needs.
#2. Coordination of Care
It is a painful truth that many hospital services are scheduled around the needs of the departments delivering them, not the needs of the patients receiving care. Care is fragmented in time and place, with the dispersed elements of a hospital seemingly not communicating with one another. Few centers offer them is an indication of the magnitude of the problem of breaking down interdepartmental barriers. Lack of coordination between appointments for scans and outpatient consultations is another example; truly patient-centered on Urology patient care will offer all scans and consultations on the same day.
Better integration is not only desirable between front-line and supporting clinicians, but also between the clinical specialties themselves.
#3. Informing & Educating the Same
Patients' requires informing and educating after their consultations. For some this will relate to diagnosis or prognosis, but for others it will relate to associated issues such as insurance, finance and inheritable risk. The surgical literature is so biased towards the publication of 'success' and so dominated by results from a few centers that it is often valueless in informing individual patients. This could be improved by patient-centered care communication.
Physical Comfort Plays A Vital Role
Hospital infrastructure is too often poorly designed, uncomfortable and difficult to navigate. Overcrowded, noisy waiting areas are not helpful in comforting the patients. En-suite bathrooms are found in even the seediest hotels but rarely in hospitals. The sharing of toilets is undesirable not simply from the perspective of privacy, but surely also from that of cross-infection.
Doctors need to focus on outcomes that matter most to patients. All clinicians should become as focused as much on pain relief as they are on surgical margins.
#4. Involvement of Family & Friends Proves To Be Good Emotional Support
A diagnosis of serious Urologic disease is shattering and the emotional consequences are deep. One underestimated emotional need of patients is the desire to 'give something back' to a service, perhaps through volunteering, fund raising, or assisting in a service re-design.
#5. Patient's Preferences Are Important and Should Respect the Same
It is obvious that patient-centered care must respect a patient's wishes. These issues are particularly significant in decision making about surgery or radiation-based treatments in pelvic cancer, where the strongest predictor of treatment choice continues to be the type of physician offering advice.
Respect for patient preferences at the end of life is equally vital and must be more likely if honest conversations take place with patients when they are well surely makes a difference.
#6. Transition & Continuity Is Crucial
A clinical service provider must communicate well, and generate timely correspondence ideally at the time of the clinical interaction, that allows safe transition to community directed care. Patients in the community need to be able to contact their clinical team easily; GPs need access to hospital datasets, and patients should carry their medical record on a memory stick.
The delivery of truly patient-centered care represents huge challenge to all clinicians, not just urologists. A change of system is required and clinicians need to be at the heart of it. A start would be for the science of quality improvement to become as important in urological training as the technological and biomedical aspects of the specialty.