Aging - End of Life issues

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Centers for Disease Control and Prevention

End of Life Issues

Effective public health strategies and medical treatment advances have resulted in a 30-year increase in life expectancy during the 20th century. As people are living longer, their expectations about quality of life throughout the lifespan, including at its very end, are increasing. Unfortunately, death itself is ultimately not preventable, and most people will die as a result of chronic disease. The public health field is aware of this issue and plays a critical role in helping Americans to maintain quality of life throughout their lives.

The end of life is associated with a substantial burden of suffering among dying individuals and also has health and financial consequences that extend to family members and society. The data indicate that as many as 50% of dying persons with cancer or other chronic illnesses experience unrelieved symptoms during their final days. Furthermore, recent studies demonstrate an increased likelihood of depressive symptoms and mortality among caregivers of terminally ill patients. Because most deaths occur within hospitals, end-of-life care has been recognized as an important clinical issue needing improvement.

Despite its demonstrable importance as a societal health concern, end of life has only recently captured the attention of the public health community. Although death itself is ultimately not preventable, much of the suffering that may accompany terminal illness is amenable to interventions that are often not accessible to everyone. For instance, studies point to disparities in hospice use, particularly among patients with certain types of cancer, such as prostate cancer. It is uncertain whether these disparities are due to lack of awareness regarding the options for end-of-life care, or to differences in perspectives regarding end of life.

End Of Life Awareness: A Public Health Issue

In 2002, members of CDC’s Healthy Aging Team collaborated with colleagues from the Division of Cancer Prevention and Control and the Association of State and Territorial Chronic Disease Directors now known as the National Association for Chronic Disease Directors (NACDD) to develop public health priorities for end-of-life issues. This work involved 200 key public health stakeholders and resulted in 103 short-, intermediate-, and long-term priorities.

The top five initial priorities are:

Identifying a point of contact for end-of-life issues in state health departments

Collecting and analyzing data about end of life

Incorporating end-of-life principles into state comprehensive cancer control plans

Educating the public about hospice and palliative care

Educating the public about the importance of advance directives and health care proxies.

These top five initial priorities form the framework for our current projects that focus on EOL issues.

Planning for the End of Life

Family members are often asked to make decisions on behalf of a loved one who is seriously ill without having a complete understanding of his or her preferences. To avoid this situation, older adults should discuss their end-of-life wishes with family members and health care providers well before the onset of a serious illness, and they should designate a surrogate decision maker for health care.

Having these conversations is the best way to protect one’s independence in a myriad of unpredictable situations. Many people find it difficult to begin a discussion about end-of-life issues, however. Fortunately, several resources are available to help foster meaningful conversations and practical planning for end of life care.

Understanding Palliative Care and Hospice Care

For the past several decades, the health care system has provided a number of options to ease the dying experience. Medical treatment has expanded to include palliative care and hospice care. The goal of palliative care is to achieve an optimal quality of life for patients by using a holistic approach that focuses on the alleviation of pain, symptoms, and other unique needs of the patient at any time during their experience with a serious or life-threatening illness. A combination of social support, emotional support, and attention to spiritual aspects of care and respect for the patient’s culture, beliefs, and values are essential components of this approach. Although the level of palliative care intensifies at the end of life, the focus on the relief of suffering and improvement of quality of life is important throughout the course of the illness, and aspects of palliative care can be provided along with life prolonging treatment during earlier phases of a patient’s illness.

Hospice care is an organized program for delivering palliative care that involves an interdisciplinary team of specially trained health professionals and volunteers. Hospice care is delivered to dying patients in inpatient units, nursing homes, or, most often, in their own homes. In addition to providing palliative care and personal support to individuals at the end of their lives, hospice provides support to the family while their loved one is dying as well as during the bereavement period. In 1982, Medicare began reimbursing for hospice services. To qualify for the Medicare hospice benefit, terminally-ill patients must have a terminal diagnosis, a life-expectancy of 6 months or less, and is willing to forgo further treatments. Patients who live longer than 6 months can be “recertified” if their situation still meets the criteria for the hospice benefit.

EOL Resources and Toolkits

Hospice and Palliative Care

Guardianship/Surrogacy Issues and Protection

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