End-of-life care is an essential aspect of healthcare that is often overlooked.
Patients at the end of their lives should have the right to make decisions about their care and treatment, and these decisions should be respected and upheld by healthcare providers. Unfortunately, this is not always the case, and patients' end-of-life decisions can be disregarded or ignored. One simple technology solution that can protect patients' end-of-life decisions is an advance directive registry.
An advance directive is a legal document that outlines a patient's wishes for their end-of-life care. It can include instructions about life-sustaining treatments, such as mechanical ventilation or artificial nutrition and hydration, as well as appointing a healthcare proxy or power of attorney to make medical decisions on the patient's behalf if they become incapacitated. However, advance directives are often not honored by healthcare providers, leading to unnecessary and unwanted interventions at the end of life.
An advance directive registry is a technology solution that can help protect patients' end-of-life decisions. It is an electronic database that stores patients' advance directives and makes them accessible to healthcare providers when needed. The registry can be accessed by authorized healthcare providers, such as physicians, nurses, and social workers, to ensure that patients' wishes are respected and upheld.
One example of an advance directive registry is the National Electronic Registry of Advance Directives (NEAR), which is run by the National Hospice and Palliative Care Organization (NHPCO). NEAR is a web-based platform that allows patients to upload their advance directives to a secure database. Healthcare providers can then access the database to ensure that patients' wishes are respected and upheld.
NEAR has several benefits for patients and healthcare providers. For patients, it provides a secure and accessible way to store their advance directives, ensuring that their wishes are respected and upheld. For healthcare providers, it ensures that they have access to patients' advance directives when needed, reducing the risk of unwanted interventions and improving the quality of end-of-life care.
NEAR is just one example of an advance directive registry, and there are several others available. These registries can be operated at the state, regional, or national level, and they may be run by government agencies, healthcare organizations, or non-profit organizations.
Advance directive registries have several key features that make them effective in protecting patients' end-of-life decisions. These include:
Security and Privacy
Advance directive registries must be secure and ensure patient privacy. Patients' advance directives should only be accessible to authorized healthcare providers, and the registry should comply with all relevant privacy laws and regulations.
Accessibility
Advance directive registries must be accessible to healthcare providers when needed. This may require integration with electronic health records (EHRs) or other healthcare information systems to ensure that healthcare providers can access patients' advance directives at the point of care.
Interoperability
Advance directive registries should be interoperable with other healthcare information systems to ensure that patients' advance directives are accessible across different care settings and providers.
Patient Engagement
Advance directive registries should encourage patient engagement and education about advance directives. This can include providing information about advance directives and how to create them, as well as offering tools and resources to help patients create and store their advance directives.