As a result of advances in public health and the development of lifesaving medical technology, Americans live longer than ever. Death, when it comes, often follows a chronic or progressive illness.
Unfortunately, the care received near the end of life often does not reflect a person’s values, goals, and informed preferences. Although the majority of people say they would prefer to die at home, two-thirds of Medicare beneficiaries die elsewhere, such as a hospital’s intensive care unit. People frequently endure unwanted treatment and suffer from inadequate pain management and shortness of breath, which often puts an enormous stress on family caregivers. A fragmented medical system and a lack of communication among doctors, patients, and families may result in less than optimal patient experience. But difficulties in the health care system may also be caused by the reluctance of patients, families, and doctors to discuss options and the alternatives to further treatment. Having these conversations early in the course of a serious illness is important, because most people who are near death are unable to communicate their wishes.
Pew seeks to improve end-of-life care by advocating for policies that help people make informed decisions about their treatment preferences, improve the documentation of these preferences, and hold health care providers accountable for honoring patient wishes and delivering high-quality care. Additionally, the project will highlight innovative ways of providing care to seriously ill people and their families as the patients reach the end of their lives.
Y. Khalid Siddiq is a physician who moved to the United States from Pakistan 40 years ago. He has been an active member of Al-Farooq Masjid, the largest mosque in Atlanta, for more than 35 years, serving as its director and now overseeing outreach programs and education. Read More
For more than five years, the Rev. Wendy Fenn served as the associate pastor for congregational life at the First Presbyterian Church of Dallas. The church provides a variety of end-of-life planning resources to its 1,500 members, including guidance on hospice care, legal and financial planning, and funeral and burial services. It even has a guide, “Preparing for End of Life: Easing the Way... Read More
Advance care planning is a process that allows an individual to discuss and document his or her preferences and values regarding medical care in the case of a serious or life-limiting disease. This medical and legal process seeks to ensure that patients receive the care they want in the setting of their choice. It may also reduce stress on family members and avoid conflict among them. Ideally,... Read More