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    Aging, Chronic Conditions, and End of Life

    Many ethical issues in medical care result from astounding leaps in life expectancy achieved during the 20th century. Effective public health measures, treatment of once-fatal infectious diseases, and a wide range of life-sustaining technologies allow people in developed nations—and increasingly, in developing nations—to live much longer. Often, part of a longer life is developing age-related chronic illnesses that people may live with for years.

    These illnesses include familiar chronic diseases that are treatable such as diabetes and others that currently are not, such as Alzheimer’s. They also include diseases that used to kill patients quickly, like cancer and HIV/AIDS, as well as many physical disabilities and mental health conditions. Low-cost whole genome sequencing may lengthen even further the time people live with chronic illnesses by raising the possibility of diagnosing some of these conditions decades before we develop them.

    Individuals with chronic conditions, long-term injuries, and disabilities face decisions about which treatments to try, whom to involve in medical decision making, how to find the daily support they may need, and when to use or forego potentially life-sustaining technologies. Basic ethical questions—like whether a patient is still able to make health care decisions or live independently—go unaddressed. Those living with chronic conditions may also face profound questions of identity, meaning and uncertainty about goals, arising from aging, illness and impending mortality. Doctors, nurses, nurse practitioners, and physician assistants may be very good at battling disease, but in our current health care system, they struggle to coordinate patients’ care over time, especially after a patient leaves the hospital. Patients and their caregivers, often family members, are left trying to manage and finance increasingly complex care regimens at home. The burdens on family caregivers are enormous, impacting the caregivers’ own health and the family’s fiscal security.

    What does our society owe to those living with chronic conditions? How can we build systems of care that are more responsive? How can we help people “age in place,” remaining members of their community within familiar settings for as long as possible?

    When it comes to the final phase of life, there has been great progress. We now have good evidence of how best to relieve suffering, provide good palliative care, resolve conflicts, and honor the individual preferences of dying patients, but our health system is slow to incorporate this knowledge. Health care professionals are seldom reimbursed for discussing the end of life with patients, have limited time to address the subject, and often are poorly prepared to talk about such sensitive matters. They may also be unaware of what is ethically and legally permissible or confused by continuing ethical debates on issues like physician-assisted suicide or determining death in the context of organ transplantation.

    As the massive Baby Boom generation ages, health care professionals, patients and families face unprecedented challenges. There will be hard choices to make requiring careful ethical analysis, balancing of stakeholder interests, health care professional accountability, and the need for civil discourse in the public square.

    Activities

    Current Projects

    Care Transitions in Aging Societies: Singapore Casebook, 2nd Edition

    Improving End-of-Life Care in the Hospital

    Recent Past Projects

    The Hastings Center Guidelines on End-of-Life Care

    The Chaplain’s Role in Pediatric Palliative Care

    In the News

    Nancy Berlinger on conversations about dying (Association of Health Care Journalists)

    Mildred Solomon on kidney transplantation (Maine Public Radio)

    Selected Publications

    Nancy Berlinger, Bruce Jennings, and Susan M. Wolf, The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life (Oxford University Press).

    Mildred Z. Solomon and Nancy Berlinger, “Seizing a Medicare Moment to Improve End-of-Life Care,” Time.

    Susan M. Wolf, Nancy Berlinger, and Bruce Jennings, “Forty Years of Work on End-of-Life Care: From Patients’ Rights to Systemic Reform,” New England Journal of Medicine.