Building a reliable process for advance care planning and providing respectful care at the end of life comes with many challenges, but improvement is possible. The following excerpt from the IHI white "Conversation Ready": A Framework for Improving End-of-Life Care (Second Edition) paper discusses what health care organizations must overcome to develop a systems approach to improve end-of-life care.
While many recognize the need to improve the way health care systems guide patients and families through serious illness, reduce episodes of harm, and ensure individuals’ end-of-life care wishes are respected, this is not simple to do. Although the vast majority of patients develop a serious illness prior to their death, such as organ failure, a terminal illness, or frailty, rather than dying suddenly without a preceding serious illness, few organizations routinely or systematically identify such patients. Most health care organizations do not have adequate systems in place to reliably support advance care planning for patients, particularly those with serious illness, much less improve it.
Health care organizations seeking to become Conversation Ready often face several system-level challenges:
- Many health care organizations have little to no familiarity with, or infrastructure for, advance care planning (ACP). Numerous barriers to ACP exist, including a lack of the necessary knowledge, attitudes, and skills on the part of health care professionals, patients, and their families to feel comfortable with discussing serious illnesses and preferences about end-of-life care; a perceived lack of time to have such conversations;
- Large inadequate health information systems for managing the ACP process; poor coordination among members of the health care team; and poorly developed or non-existent feedback loops to drive iterative improvement.
- Transitions in care often introduce risks of discontinuity to patients with serious illness, especially those who are near the end of life. Such patients may receive care in an outpatient clinic, inpatient settings (including emergency departments, medical floors, or intensive care units), rehabilitation or nursing facilities, or in their homes. Even within the same health system, information about patients’ illnesses, treatments, and end-of-life care wishes may not reliably accompany them as they transition between various care settings. This discontinuity may contribute to harm.
- Defining “error” and “harm” with respect to end-of-life care may vary depending on what matters most to each patient. One of the most unique aspects of end-of-life care is that, for some patients, the ultimate goal may be to allow death rather than prevent it. This is in contrast to most other situations in health care where we strive to prevent death. In the context of serious illness, what is considered an error depends entirely upon a patient’s goals, values, and preferences at the end of life. In some situations, failing to attempt to sustain life is an error, whereas in others, attempting to sustain life is an error. The prevalence of such errors is difficult to determine, but may be significant. Such errors may be perceived as examples of disrespect: failures to respect patients’ goals, values, or preferences.
To avoid such errors and the subsequent harms, rather than striving to prevent death as the default goal, health care must focus on identifying and respecting patients’ wishes in an iterative fashion so that care is provided in accordance with what matters most to each patient. For many health care organizations, this shift in perspective is a prerequisite to the recognition of preventable non-physical harm, and as such may need to be part of their system-level work.
Despite the many challenges, improvements are possible. Adopting a systems perspective is critical. Health care organizations that objectively scrutinize their own performance will likely find that while some patients are receiving optimal advance care planning, others are not. Such variation fundamentally represents unreliable care processes: groups of related actions performed to fulfill patient and family care needs that are poorly designed, organized, or executed.
To learn more about the other essential elements of improving end-of-life care, download the free "Conversation Ready": A Framework for Improving End-of-Life Care (Second Edition) white paper.
Editor’s note: Learn more during session QC3: Is Your Organization Conversation Ready? at the 2019 IHI Summit on Improving Patient Care (April 11–13, 2019 in San Francisco, CA, USA).