Ordering the chaos for patients with multimorbidityBMJ 2012; 345 doi: https://doi.org/10.1136/bmj.e5915 (Published 07 September 2012) Cite this as: BMJ 2012;345:e5915
Estimates of the prevalence of multimorbidity vary according to how it is measured, but studies agree that prevalence is rising and that it increases precipitously with age.1 By middle age, multimorbidity is the new normal. The first article in this editorial series on multimorbidity highlighted the difficulty of achieving evidence based targets for multiple diseases in a single patient.2 Treating all of a patient’s diseases optimally represents a considerable management burden for the patient and can result in a chaotic experience of care. Barbara Starfield defined relational continuity in primary care as person focused care over time, and such an approach is needed for patients with multimorbidity, rather than the more traditional one of managing diseases.3 But how can continuity of care be achieved for patients with multimorbidity?
Continuity of care is most commonly defined as a connected and coherent series of healthcare events, or seamless care.4 For the healthcare professional, this means having all the necessary information about the patient at the point of care (informational continuity) and coordinating actions with other providers to deliver services in a complementary and timely manner along a recommended care pathway (management continuity). Connectedness matters for healthcare professionals because it translates into technical quality of care and patient safety. For patients, however, continuity is experienced most directly through the trust and partnership developed with a trustworthy person or team who knows them well (relational continuity).5 6 7 Most patients assume that transfer of information is seamless and that care is coordinated, so that gaps in care arrive as bad surprises. This shakes their trust and confidence in professionals and leads them to question the competence of professionals and potentially to become non-adherent to treatment.8
It takes work to build continuity. Dealing with gaps in care—whether the result of missing information or interruptions—is a normal occurrence in the day to day work of healthcare professionals and others in inherently high risk environments.9 10 Professionals engage their mindfulness, expertise, and judgment to anticipate, detect, and bridge these gaps or discontinuities as they deliver their service. When care crosses boundaries, whether interprofessional or organisational ones, even greater effort is needed to bridge anticipated gaps. When there are multiple boundaries and multiple illnesses to manage the likelihood of errors and chaotic care increases, and the work of providing continuity becomes considerable.
The findings of two recent reviews of qualitative studies that examined patients’ experiences when they were receiving care from multiple providers suggest several points that may help health professionals, especially primary care providers, to give patients with multimorbidity safe and person focused care over time and over many care boundaries.6 7
Firstly, healthcare professionals typically underestimate the amount of stress and uncertainty that patients experience when crossing any new care boundary, not just big ones such as discharge from hospital. When patients cross care boundaries they feel vulnerable because they do not understand the institutional or professional mores and routines.11 12 Patients could benefit from support in their transition, much like the support offered at the time of discharge, even for transitions that are considered routine for the professional, such as referrals to specialists or diagnostic testing. Transition support comprises information to help patients anticipate and understand the new environment; guidance on what problems to be alert to and where to get help; and a contingency plan for returning to or contacting a safe care environment in the case of unmanageable distress.
Secondly, patients have often been viewed as passive actors in the provision of continuity, but most expect to and can have a role in managing and coordinating their own care. Professionals act as principal agents on behalf of the patient because they possess the clinical expertise and knowledge of the system,13 but patients can also contribute to monitoring, communicating, and selecting services. However, providers need to build or “sharpen” patients’ capacity for coping with gaps through sharing information with them about their prognosis, their care plan, potential gaps in services, and strategies for coping. Most patients want to have their role and ideas acknowledged and to feel that they are involved in their care.
Not all patients feel this way, however, especially those who are not familiar with the health system, have low health literacy, or are simply not able to advocate for themselves.14 This can include otherwise proactive patients as their illnesses worsen. Clinicians should be alert to the small proportion of patients who cannot find information easily on their own; these people are also those who consistently experience problems of access and continuity in healthcare environments. It may be helpful to make arrangements to ensure that such patients receive robust and proactive coordination of care. This can be done, for example, through scheduling additional time for coordination or by referring to a care manager who ensures that these patients receive connected and coherent care.
Finally, the importance of having one main coordinator of care cannot be overemphasised when a patient has multiple morbidities. This is ideally the provider with the most comprehensive knowledge, typically the general practitioner or family doctor, but the designation may change depending on the intensity of the care needed. What matters for continuity is that the designation and role of the coordinating person should be explicit and visible to the patient and to others in the system. Even when being cared for by a team, patients usually prefer to have one person who is most responsible for their healthcare and advocates for their welfare in the healthcare system. Patients with multimorbidity ideally need a primary care provider who is willing to develop a holistic view of the patient and his or her priorities. This person must also have the time and resources to coordinate health services across many boundaries, be able to build the capacity of patients to be partners in their care, and have mechanisms for detecting and supporting patients if they are overwhelmed.
Cite this as: BMJ 2012;345:e5915
Competing interests: The author has completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declares: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.
Provenance and peer review: Commissioned; not externally peer reviewed.