Fragmentation as a bane to patient and family quality of life

A person with a serious illness can tell you that the fragmentation of the healthcare system is a barrier in many practical ways. Every specialist asks you to fill out their history form, and then does not seem to read it. Every specialty as well as primary care has a patient portal. Each portal can look and function differently, and one might need a spreadsheet to track all the different logins and passwords. The Electronic Health Records have not yet, except in rare instances, created a single patient-centered data warehouse.
The information from specialty care seems to never really make it to primary care, or if it does it comes weeks to months later, sometimes the usefulness of the information has expired by then. Some specialists see themselves as central to care, rather than primary care, for example an oncologists may place themselves at the center of care for a cancer patient.

One of the hallmarks of primary care is being comprehensive, not portioned off into one body system or body part but care that spans whole person. Increasingly, that includes behavioral health, through a team-based approach. Care coordinators and navigators are newer roles meant to help patients and families find their way through the fragmentation. Primary care practices that fully adopt medical home structures and processes coordinate care across other parts of the healthcare delivery system and put the patient at the center of care.

Patients with serious illness might be those most in need of a way to bridge the fragments and have a coordinated approach to care. Palliative care can be said to have four pillars:

•    Information and support to make decisions that reflect patient’s goals and values
•    Pain and symptom management
•    Psychosocial and spiritual support for both patient and family
•    Care plan continuity

“Individuals who are seriously ill need care that is seamless across settings, can rapidly respond to needs and changes in health status, and is aligned with patient-family preferences and goals “ 4th Edition , Clinical Practice Guidelines for Quality Palliative Care. 

To achieve care plan continuity, and seamless care, the palliative care team can play a critical role, not just in a single consult, but in a relationship over time. This is an important intersection with primary care. In many cases, the rural primary care provider has known the patient and family for a long time and will be facing their own sadness about the serious illness diagnosis. While some primary care teams have adopted the Patient-Centered Medical Home, with robust care coordination to wrap around the patient, others focus more on single episodes of care and leave the patient to navigate specialty care. Or the oncologist, neurologist, rheumatologists, etc. may see themselves as the leader of care. The palliative care service can add value by mapping who is engaged in care, and helping the patient understand who will be caring for what symptoms or body systems. If the primary care clinic is adept at care coordination, the palliative care service has an obligation to build rapport and define how the partnership will work. With primary care that offers less coordination, the palliative care team may need to play a more primary role with care coordination and navigation. In hospice, most of the specialist care may proceed, and often the hospice medical director takes over care. Roles are less clear cut for palliative care, and the patient and family may need the palliative care team to take an assertive role in care coordination. 

 Pat Justis, Washington State Department of Health