Tackling the Last Taboo: Discussing End-of-Life Issues

Providing tools and support to encourage discussion and communication of preferences

By Archelle Georgiou, M.D., Embark Health Apr 9, 2010

Americans will talk about virtually anything in virtually any setting: politics, sex, war, religion. But there’s one topic we seem to avoid discussing, particularly in the workplace: death and dying. Yet we should. Death is truly as much a part of life as birth. Therefore, it is as much an issue to employers as any other facet of life that impacts their employees.

Each year, close to 630,000 working age adults will die. Millions more—children, spouses and loved ones—are affected not only personally but in their work life as well. Valuable employees take time off to care for loved ones; longtime employees are diagnosed with a terminal illness; grieving can lead to absenteeism, presenteeism, depression and substance abuse.

These realities create a financial toll for employers. Approximately 25 percent of benefit expenses are paid during the last year of life. What’s more, lost productivity, as well as the demands of caring for the dying, costs employers millions of dollars a year.

A small number of leading employers are beginning to explore the impact terminal illness and death have on their workforce. The key, say these employers, is recognizing the scope and impact of death and a commitment to the development of programs and services that help employees and loved ones cope with the realities of end of life in their personal and professional lives.

Pitney Bowes, with approximately 35,000 employees worldwide, is at the forefront of workplace programs to help employees manage end-of-life issues. Brent Pawlecki, M.D., corporate medical director for the company, has established himself as an expert on the topic and recently published a landmark article, "End of Life: A Workplace Issue," in Health Affairs, a leading industry publication.

Pawlecki notes that one of the most important services employers can offer is education, knowledge and access to reputable and trusted resources and tools that can help employees manage and cope with end-of-life issues. One key tool for employers to promote is an advance directive (AD), a legal document outlining an individual’s end-of-life preferences.

The Importance of Advance Directives

Many employers mistakenly assume that employees have access or information on ADs. Only 15 to 20 percent of people have an advance directive. Of that number, less than one-half actually have the AD in their medical record. And, even when people have an AD, in most instances—up to 75 percent of the time—physicians are unaware of patient choices. As a result, few people end their lives the way they prefer. Gallup polls found that 90 percent of respondents would prefer being cared for in their home if they had a terminal illness and a prognosis of six months or less to live. However, 80 percent of Americans die in a medical facility such as a hospital or nursing home.

Even family members often do not know that an AD exists for their loved one. Patients might identify a health care agent to carry out their wishes but never discuss it fully or address all the instances where an AD might be necessary. Wishes might be discussed with some but not all family members, leading to conflict and tension during a time when families should come together. The health care agent might not understand all legal or clinical issues or might be unwilling to ask some of the difficult questions that arise during end of life.

For example, what if a patient is comatose? Does the family agree to continue feeding via a tube? What if the patient is dying of cancer but then gets pneumonia? Is an antibiotic provided?

When issues and preferences are not discussed fully, health care providers often err on the side of administering aggressive and invasive treatments. As a result, people often receive painful and expensive health care services they do not want. Families experience tremendous guilt and regret, wondering if they made the right decisions.

Conversely, when end-of-life issues are discussed and fully outlined in an up-to-date and legally enforceable AD, family members don’t have to guess at the loved ones’ preferences. They can avoid conflict and feel assured that the wishes of the individual will be upheld.

New services are available to help employers and employees create effective ADs. For example, AARP, the American Academy of Family Physicians and nonprofit legal services offer a number of useful programs. Private organizations are bringing new solutions for individuals, employers and health plans.

A Necessary Conversation

Employer involvement in end-of-life discussions creates a new dynamic between employer and employee. The key for employers is to ensure that the end-of-life programs provided are reputable, legal, private and secure. Additional steps employers should undertake when providing support to employees for creation of advance directives (ADs) include:

Promote the value of ADs through internal resources (company newsletters, intranet, team meetings, etc.) to all employees, regardless of age or health status.

Identify the reputable and recognized resources that will provide the education, information and support employees need to create an AD.

Encourage employees to communicate to everyone within their circle of care about their end-of-life wishes and the availability of an AD. Make sure employees have a thorough discussion with physicians and caregivers so that they are aware of what to expect and options.

Ensure the AD used by the employee is readily available to providers when needed, accessible to members of the circle of care, and enforceable. Even when people have an AD, if it is out of date or doesn’t address a current situation, it might not be followed. Educational resources and companies can help ensure that employees get needed information and guidance.

Offer programs that include electronic services that make it easy to create, store and update ADs. These services should help ensure that physicians, hospitals and other health care providers have ready access to the latest AD.

Reassuring Employees

While there is clearly a growing recognition that end-of-life issues should become a part of the workplace discussion, it remains a sensitive, and at times controversial, topic.

Employers will need to communicate clearly the goals of their end-of-life programs to address concerns such as privacy and job security. Communications should be open and transparent to reassure employees that the goal is to provide support and counsel to help them through the grieving process and to move forward with their lives.

Information about programs and resources should be provided to employees through as many programs as possible—from the employee assistance program (EAP) to the general health care benefit to wellness initiatives. The goal should be to ensure that when a person is ready to access resources, they will be familiar with programs and know where to go.

Bringing Clarity to End-of-Life Discussions

Employers cannot reverse the tragedy of a terminal diagnosis or the death of a loved one. They can, however, provide employees with the proven tools and support to encourage discussion.

Archelle Georgiou, M.D., is chief health strategist for Embark Health.

Sidebar 1:
Variations in Care During Patients' Final Six Months

Miami, Florida

Portland, Oregon

Physician visits

46 (mostly specialists)

18 (half with primary care)

Time spent in an intensive care unit (ICU)

> 6 days

1 day

Total cost for physician and hospital care



Source: Dartmouth Atlas of Health Care 2006 (chart via a presentation by Brent Pawlecki, MD, at the 2010 World Health Care Congress, April 2010).


Sidebar 2:
Planning for the Future

An employer issue:
Employees are caregivers.
Unexpected health crisis for employee or partner.

Employer actions:
Encourage financial planning.
Encourage wills.
Encourage Advance Directives.
Review bereavement policies.
Long-term care policies
Employee Assistance Programs (EAPs) and counseling services.

Source: presentation by Brent Pawlecki, MD, at the 2010 World Health Care Congress, April 2010.

Exterrnal Articles/Resources:

The End of Life: Lessons from a $618,616 Death, BusinessWeek, March 2010

Planning Ahead: Advance Care Planning and Advance Directives, Caring Connections web site

Related Article--SHRM:

Inclusion for Employees Facing End-of-Life Challenges, SHRM Online Diversity Discipline, March 2010

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