Can implementation of standardized care pathways meet the conflicting demands of an integrated, personalized and effective care?

Abstract

Background: In the wake of demographic changes, with a growing and aging population living with a diversity of long-term and complex conditions, there is an urgent need for cost-effective care. Concurrent ideological voices, advocating greater citizen involvement, autonomy and freedom of choice and the bolstering of private markets for social care services and products, raise a number of competing and contradictory demands. In the face of these global challenges, Swedish healthcare, like that in many other countries, has undergone a number of reforms. The changes made, aiming to improve effectiveness and quality, have rather led to increased specialization, division of roles and responsibilities, making it hard to see how integrated care services that bridge institutional borders can be supported. To meet the increasing burden of cancer treatment and the need for better coordination and integration of the different clinical aspects involved in cancer care, the Swedish government recently launched a national reform to standardize cancer patient pathways. Prostate cancer is one of five cancer diagnoses for which a clinical chain of care was introduced in early 2015, operationalized as a standardized package. In this paper, we illustrate the dilemmas that arise and the conflicting demands that need to be managed with the introduction of a standardized patient pathway for prostate cancer patients. The aim was to describe how patients diagnosed with prostate cancer experienced their pathway through the healthcare system and to compare with the journey described in healthcare policy documents. Methods: Fourteen individual interviews were conducted with patients who had undergone treatment for prostate cancer at a mid-sized hospital in southeast Sweden. As a basis for the interviews, a template with a generic scheme for a standardized cancer patient pathway was used. Interviews were audio-recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: We found that the clinical view of the standardized cancer pathway as a ‘straight line’ through the health care system was rather experienced as ‘riding an undesirable rollercoaster’ from the patients’ point of view. Lack of personalized and timely, coordinated information was the most common experience. Although lead times between test and diagnosis or between diagnosis and treatment were shortened within standardized frames, the patients’ experiences of ‘waiting’ were of an existential nature: a matter relating to life and death. Patients described being left in a void between planned visits to the hospital. Integration of support from professionals or other caregivers was not sufficiently included in the standardized cancer pathways. Discussion: This study highlights that implementation of standardized care pathways for specific patient groups, such as prostate cancer patients, aimed to make care more efficient, may not be compatible with other ideological incentives, such as personalization, integration and equity of care for all patient groups.