Planning for the End of Life

Public health strategies, coupled with medical advances, have resulted in a 30-year increase in life expectancy since the dawn of the 20th century. People are living longer and expectations about their health and quality of life are increasing. These expectations extend to wanting to ensure that the last months and years of life are lived as fully as possible, as pain-free as possible, and with dignity.

Traditionally, much of the nation’s public health network focus is about infants and children—ensuring that babies are born into the world as healthy as possible and that children thrive and are protected from injury and communicable diseases. In more recent decades, additional strides have been made in ensuring that our nation’s adults practice healthy behaviors and take advantage of preventive measures that reduce their risk of chronic disease, injury, and infectious diseases such as influenza and pneumonia.

Now, as more and more baby boomers reach their older years, opportunities exist through the nation’s public health network to focus on more about the end of life and help ensure that Americans have the resources needed to make informed choices and decisions about how their final months and days are spent.

Recognizing how important it is to be prepared for the end of life, CDC defined better opportunities, public health roles, and responsibilities in 2002.

As a first step, CDC’s Healthy Aging Program, in collaboration with CDC’s Division of Cancer Prevention and Control and the National Association of Chronic Disease Directors (NACDD), worked with more than 200 key public health stakeholders to identify short-, medium-, and long-term public health priorities related to the end of life.

Of the priorities identified, five were deemed most critical and ready for action. These include the following:

Identify point of contact for end-of-life issues in state health departments.
Collect, analyze, and share data related to the end of life.
Incorporate end-of-life principles in state comprehensive cancer control plans.
Educate the public about hospice and palliative care.
Educate the public about the importance of advance directives and health care proxies.
Of these top priorities, CDC chose public education, data collection, and data analysis, to pursue initially.

Planning 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 alleviating 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 improving 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.

End-of-Life Resources
Advance Care Planning

Center for Practical Bioethics Caring Conversations
Caring Connections
Aging With Dignity-Five Wishes
Respecting Choices

Hospice and Palliative Care

National Hospice and Palliative Care Organization
National Association of Home Care and Hospice

Guardianship/Surrogacy Issues and Protection

American Bar Association Commission on Law Aging