The groundbreaking report released in 2015 by the Institute of Medicine, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, reminds us that death is a natural part of the life cycle and a deeply personal human experience. Persons at the end of life and their caregivers rely on health care providers for guidance and support for what may be one of the most challenging experiences in their lives. Unfortunately, outside of specially trained hospice and palliative care providers, most healthcare providers are often not well prepared for offering that support. Challenging attitudes and beliefs about death and the dying process can impose barriers to effective care from healthcare providers and/or patients and their families, including referral to a hospice or a palliative care specialist who could provide that care. Despite adoption of the Medicare hospice benefit by the U.S. Congress in 1982, most dying people and their loved ones are either not referred or do not accept the benefit. Those that do receive hospice are often referred late. According to the National Hospice and Palliative Care Organization the average length of stay of those that did receive the hospice benefit was 17.4 days in 2014. This is a small percentage of the 180 days that Medicare considers to be the appropriate length of stay for this rich interdisciplinary service.
Discussions about goals of care and end of life care preferences should begin well before a person’s last hours. Advance care planning is the process of establishing advance directives such as a Health Care Proxy as well as establishing patient centered goals of care. In 2011, New York State’s Palliative Information Act became law, requiring providers in the state to provide information about palliative and end of life options at the time of diagnosis of a terminal illness. Clinicians who are uncomfortable having that discussion should refer to a palliative care specialist for collaboration.
The clinical management of a dying person can be well managed by hospice staff whether in the person’s home, hospital, or a skilled nursing facility (SNF). Whether the dying person is receiving the hospice benefit or not, it is helpful for all clinicians to understand the process. Management of pain and symptoms as well as psychosocial and spiritual distress is important regardless of where a person may be on the palliative care continuum and are covered elsewhere in this site. Recognizing the signs people may exhibit as they approach death such as increased sleep, decreased intake, increased confusion, changes in breathing patterns and preparing loved ones for these eventualities can be helpful. The websites below are provided for more detailed information about end of life care.
- Compassion and Support. Legislative information for the current New York State laws and regulations
- Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Institute of Medicine report.
- A Nurse Reflects on the Privilege of Caring for Dying Patients. National Public Radio broadcast.
- End of Life Care. Bioethics briefing from The Hastings Center.
- End of Life Nursing Consortium (ELNEC)
- Hospice and Palliative Nurses Association
- National Hospice and Palliative Care Organization
- American Academy of Hospice and Palliative Medicine
- Clinical Practice Guidelines for Quality Palliative Care. Clinical guidelines published by the National Consensus Project.