An act by Last Acts
The often taboo but critical issue of terminally ill employees or family members has received less attention than it merits, say many occupational health professionals. But the issue was brought to the fore again recently with the publication of a workplace end-of-life (EOL) implementation toolkit by Last Acts, a Washington, DC-based national coalition to improve care and caring near the end of life.
"This is a work/life issue, a family issue, a productivity issue, and, I argue, it is also an economic development issue," asserts Donna L. Wagner, director of gerontology at Towson (MD) University and a consultant to Last Acts on the toolkit.
Deborah V. DiBenedetto, MBA, RN, COHN-S/CM, ABDA, president of the Atlanta-based American Association of Occupational Health Nurses, agrees. "I think it’s a work/life issue," says DiBenedetto, who once worked as a hospice nurse. "We have dealt with this issue for many years. Going back to the 1980s, we had a lot of employees with HIV or cancer. The main idea was to keep them as healthy as possible in the context of living and doing as many of their normal activities — including work — as they wanted."
This requires flexibility on the part of the employer.
"You’ve got to look at the workplace and see what the employee can safely do," she explains. "Or it may be as simple as providing carpooling services to help them get to work. Of course, you still need to meet the needs of the organization as well." In any event, she says, the occupational health professional should serve as an advocate for the affected employee.
While there is much progress to be made, some has already been achieved, says Wagner. "What we’ve seen since about the mid-’80s has been a broadening of employer response concerning the interface between the employee and work," she notes. "A number of companies began programs for caregivers — family and friends providing ongoing care for older relatives or those with chronic ailments. There is now a good body of literature in that area, and it shows very clearly the business case for employer involvement."
At same time, she continues, people have been looking more at EOL issues. "It’s important from a health care standpoint and it is also often a natural consequence of caregiving," she observes. "Then we also have an aging population, so you see a lot more people involved." In fact, she notes, a 1997 study from the National Alliance for Caregiving (www.caregiving.org) noted that one in four families was involved in providing care for a total of 22 million people. And yet a 1999 survey Wagner cites in the toolkit indicates that only 10% of employer respondents felt they were dealing with the issue "very well."
"I think it’s the same today," she says.
Why the reluctance on the part of employers? "In part, it involves the same reasons we encountered when we tried to introduce corporate eldercare programs — cost," Wagner says. "And frankly, people are uncomfortable with the topic. Plus, many don’t feel qualified. But if we don’t have a productive workplace, we are all going to suffer."
DiBenedetto agrees. "In many cases, it’s probably because the companies don’t have the medical people to serve as gatekeepers," she notes. "Also, people don’t like to talk about death and dying; even if it’s a case of an employee not being 100% healthy, sometimes people shy away from that. They’re not sure what to do or say."
But silence is probably the worst response. "My attitude is, these people are still alive and kicking," says DiBenedetto. "In the hospice, we had patients who had just stopped working the day before — even if only for a couple of hours. They still had meaning in their lives and felt like a valuable person."
In fact, adds Wagner, there are people who are actually choosing to die at work. "Rather than saying I quit’ and being home with their families, they say they want to keep living their lives the same way," she explains. "Of course this poses a number of challenges for co-workers."
Seeing both sides
It’s also important to remember that there are two sides to the EOL issue: employees who are terminally ill, and/or family members who are being cared for by the employee.
"Both areas absolutely need to be addressed," says DiBenedetto. "If the illness is not directly affecting the employee, then appropriate use of the FMLA [Family Medical Leave Act] is very important. The challenge arises when it’s not a direct parent or child, such as in-laws. In today’s world, people have extended families and this needs to be recognized. The bottom line is, valuing employees is an important issue, whether it is the individual worker or a family member who is affected."
Across most of Middle America, she adds, you are more likely to face the problem of employee as caregiver.
"In the inner city, younger heads of household are more of an issue," she notes. "And single individuals don’t have anyone to advocate for them. Once their benefits run out, it’s a real problem if they don’t have long-term disability."
Wagner is concerned with both. "The only thing out of the scope of the toolkit is those organizations that routinely deal with EOL issues, such as ambulance drivers, firefighters, and so on. What we’re talking about is expanding awareness to other workplaces that have never thought of it, such as nonprofit organizations."
Cost should not be obstacle
You can make effective changes in the workplace for little or no cost, says Wagner. "If your company is wired, you can simply provide workers with links to specific sites and types of information, like living wills," she explains. "Or you can bring together a small group of employees to talk about issues like whether the company benefits make sense to them."
If a company believes that EOL issues need to be addressed, she adds, "Every community has professional death educators or hospice professionals who are happy to come out. Most will do it as a community service."
It’s important to be aware, says Wagner, that there are really two levels of culture at work in every place of employment — formal and underground. "For example, the formal policy may allow two days off for a funeral, but the supervisor may tell you, Take as much time as you need,’" she explains. "You can arrange creative responses, and find a way to encourage those managers who do not have a full understanding to realize people are not trying to slack off."
Informal support systems can develop within the organization, notes DiBenedetto. "One major company has prayer groups," she says. "Occ-health professionals can encourage things like that. Where people are religious, when they are terminally ill they want to reach out for something. Of course, the occupational health professional has to be comfortable with spirituality issues, so they can be an advocate."
Wagner agrees that occupational health professionals should be the ones to bring the issue into the workplace. "It’s more effective if the champion is the CEO, but they usually won’t do it," she concedes.
Occ-med professionals might consider starting a small program on their own, says Wagner. "Or if they see people come in with related concerns and wondering what to do, they might get a copy of the toolkit [at www.lastacts.org], if they don’t see themselves in the position of creating a sea change in the company." If they do see themselves in such a role, she adds, they can certainly take advantage of some of the benefits of the individual programs in the toolkit.
"Whatever they do, they need to know that this is an issue that’s not going to go away," says Wagner, "And they will be more effective in supporting and boosting the overall well-being of their patients if they consider this as a factor that may be underlying a lot of reasons why they come to see them in the first place."
[For more information, contact:
• Donna L. Wagner, PhD, Director of Gerontology, Towson University, 8000 York Road, Towson, MD 21252-0001. Telephone: (410) 704-4643. Fax: (410) 704-4705.
• Deborah V. DiBenedetto, MBA, RN, COHN-S/CM, ABDA, President, American Association of Occupational Health Nurses, 2920 Brandywine Road, Suite 100, Atlanta, GA 30341. Telephone: (770) 455-7757. E-mail: firstname.lastname@example.org.]