For patients and family caregivers - and the staff who work with them - the lack of continuity in care is disruptive and stressful. The people working in the system (not just the system itself) start to feel like inhumane automatons - even if the reality is that most people who care for the dying are deeply caring and committed to their patients. When care is continuous, patients can generally expect a certain standard of care, and they sense that an integrated team is providing trustworthy, continuous care.
Going from provider to provider and place to place creates a sense that one's care is fractured, disorganized, or substandard. Frequent transfers, changes in staff, or a general lack of knowledge about the patient erode patient and caregiver confidence that the health care system is working for them, rather than working on its own agenda.
Quite simply, without long-term relationships, providers cannot make promises to patients. Furthermore, in such circumstances, only understandings that have been made explicit (and, so, are quite rigid) can be counted on. Without a shared history, valuing the person becomes a hollow exercise, and unstated, intimate understandings are impossible or unreliable.
Developing systems of care that focus on a standard of continuity is critical. Systems need to be committed to standards of pain and symptom relief, of advance care planning, and of patient and family inclusion. As described in chapter 2, systems and teams need to be willing to make promises to patients: promises that patients will know who their treatment team is, that they will know who to call in the middle of the night (and that someone will be there to take the call), that responsive and reliable individuals are dedicated to working with the patient for a safe, dignified period at the end of life, and that their preferences and values will be honored.
Organizations can set very specific aims that will promote continuity, enabling patients to feel that the system does, in fact, care about them. One example is to limit patient transfers between units or health care settings to create the confidence and familiarity that allow patients and families to trust the health care team. Organizations should strive for specific goals. Some that can be readily achieved are described below:
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].