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Honor Their Last Will -- When Terminally Ill Employees Choose To Work

May 1, 1997
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There is no place on earth where death cannot find us—even if we constantly twist our heads about in all directions as in a dubious and suspect land ... If there were any way of sheltering from death's blows—I am not the man to recoil from it ... But it is madness to think that you can succeed.

Men come and they go and they trot and they dance, and never a word about death. All well and good. Yet when death does come—to them, their wives, their children, their friends—catching them unawares and unprepared, then what storms of passion overwhelm them, what cries, what fury, what despair!

To begin depriving death of its greatest advantage over us, let us adopt a way clean contrary to that common one; let us deprive death of its strangeness; let us frequent it; let us get used to it; let us have nothing more often in mind than death ... We do not know where death awaits us; so let us wait for it everywhere. To practice death is to practice freedom. A man who has learned how to die has unlearned how to be a slave."
Marcel de Montaigne (1533-1592, France)

Last May, Tom Terry first learned of his employee's terminal illness. Bob Hamilton, 59, a veteran of 19 years in the shipping department, developed inoperable cancer. He then requested that Terry, manager of HR at Inglewood, California-based Zephyr Tools, tell his co-workers. Terry did more than that. He spoke with everyone he could find: those who had faced cancer personally or had faced it with an employee, family member or a friend.

Terry also provided Hamilton with a hospice referral and information about the company's health-insurance policy. But in terms of human support, he pulled together a team of Hamilton's immediate co-workers to be a support system during the illness. On many occasions, Terry also listened and asked Hamilton sensitive questions. He found out what Hamilton wanted and then determined his own role: "It was my job," says Terry, whose company has 90 employees. "We're all close and work together. But I was going to be the person here at the company who he could count on. I realized that everybody going through this needs compassion." For eight months, Terry offered not only his human resources knowledge, but also his personal friendship. He often visited Hamilton at home once or twice a week. "He needed the human contact," says Terry. "For Bob, the hardest part of his illness was the loneliness."

In January, Hamilton died. Clearly, not everyone with a serious or life-threatening illness is diagnosed as terminal. But when one of your employees has accepted such a doctor's determination, expect to enter a situation that demands the leadership of a compassionate, informed and skillful human resources professional. By thoughtfully managing the needs of the dying employee and the company, HR can enhance a dying colleague's quality of life, positively influence co-workers' morale and cast a healing light on the company's cultural environment.

Who is terminally ill?
Facing death can be a frightening experience for anyone. Even the phrase terminal illness merits some clarification. "Heart patients, for example, can be just as terminally ill as a cancer patient. But we don't consider them dying," says Susan Mann, president of Pittsburgh-headquartered Hospice Nurses Association. "There are also people with [operable] cancer who become unnecessarily stigmatized in the workplace. That's a major problem too." So who is terminally ill? The definition is both objective and painfully subjective.

According to the Baltimore-based Health Care Financing Administration—the federal agency that regulates and monitors the Medicare program—an individual is considered to be terminally ill if the person has a medical prognosis that his or her life expectancy is six months or less—if the terminal illness runs its normal course. The definition has significant relevance for Medicare-qualified individuals who seek hospice benefits—most commonly, in the final weeks or months of their lives, says Mann. "Those of us in the hospice community have no aversion to the term [terminally ill]. But we recognize the general public does, so we also use the terms life-threatening or limited living." The most important thing for HR managers to do is listen nonjudgmentally and work with the information provided at the time.

Now, if you're still thinking you'll avoid a terminal illness scenario, consider this: Although treatments continue to extend longevity, the U.S. rates of cancer and HIV infection that can lead to AIDS haven't changed in recent years. Further, America's aging workforce naturally is facing more health problems. And because of managed care, more terminally ill designated individuals are treated as outpatients and may choose to remain in the workplace until they're only weeks or days away from death. Having a terminally ill employee at work challenges the skills and leadership abilities that are best drawn from the compassionate business partnerthe HR professionalwho can balance the needs of the employee, the co-workers and the company. Remember that everyone can grow in remarkable waysespecially when faced with adversity.

Avoid isolation.
Most counselors, senior managers and human resources professionals will likely agree on one thing: No manager facing a terminally ill scenario should wade through it alone. An HR professional facing this situation needs more than experts; this challenge demands an offsite confidante. Diana Dale, president of Worklife Institute Consulting in Houston, Texas, advises, "You need a confidential sounding board outside the company. Find someone you can talk to about both your feelings and your ideas."

Even when the dying person has disclosed the condition to colleagues, that's not blanket permission to discuss every indignity.

Dale says others at work may be going through the whole dying process with the terminally ill employee—the denial, the anger, the fear. Creating channels to talk about what's happening, therefore, is vital. She recommends assembling a kitchen cabinet comprised of the immediate supervisor, the work team and key personnel to meet weekly with the terminally ill employee and talk honestly about these issues: Is the work getting done? How are they managing grief? How can the dying employee's responsibilities be distributed so that projects continue? She stresses the importance of confidential meetings with just the work group, without the dying employee, to "get the snakes and toads out" so workers around the dying employee don't harbor anger, resentment and frustration that surely will surface if not ventilated in a safe setting.

While taking care of the work environment, the HR professional will need to move quickly to handle the terminally ill employee's legal and financial concerns.

Immediately address the employee's benefits.
One of the most valuable ways of supporting a terminally ill employee is to review the benefits package. It's crucial. Terry's first business decision after gathering information and listening to Hamilton's wishes was to review his benefits, seeking to maximize his choices. Terry then discussed those choices with Hamilton until he was able to make some decisions.

Another wise approach is to do a periodic benefits audit for several members of the employee's department, thereby normalizing the process that the dying employee must undertake. HR staff can help pursue the ill employee's appointments until the person's beneficiary designations are current, marital status is clear, addresses are correct and until the employee understands how to use the company's benefits when the prognosis is terminal.

HR also can create a time bank to which all employees may donate or deposit unused leave time for use by a co-worker facing a catastrophic illness. Under the leadership of James Hahn, city attorney for the City of Los Angeles, the Attorneys' Associations and the city wrote an ordinance in 1991 establishing clear protocols for donation and use of vacation time. Because of the time bank, terminally ill employees won't face any loss of their medical benefits when they're unable to work the minimum number of hours to maintain those benefits. Hahn explains how this benefits co-workers as well: "We do feel helpless when we see someone with a terminal illness. This opportunity allows us to do something that's needed. Many of us are so busy, we're not able to use all our vacations days. It works. It really is an example of people caring about other people."

HR needs to inform employees about the function of a Durable Power of Attorney for Health Care or of Advance Directives. Heartbreaking consequences can occur when these aren't in place. A Durable Power of Attorney for Health Care is a legal document that assigns medical decision-making powers to someone who will represent an individual if he or she's unable to speak for himself or herself. Without it, health-care providers will decide the extent and nature of one's care, perhaps including use of life-support systems regardless of the individual's wishes. The financial implications are considerable. Advance Directives is the name of a simple form that everyone should sign and make available to his or her health-care provider. It will explain how an individual wants to be cared for if recovery from a serious illness isn't expected. The holder of a Durable Power of Attorney for Health Care should also have a copy of the person's Advance Directives.

Few people also are aware of a new provision of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) that allows early Life Insurance Rollout. Under the terms of the act, which became effective in January 1997, persons facing terminal illness may receive a portion of the value of their life insurance as nontaxable income. According to Peggy Wallace, chairwoman of the Board of Affirmative Lifestyles in San Antonio, Texas, the act defines a terminally ill person as "someone who has a life expectancy of less than 24 months as confirmed by an attending physician." Affirmative Lifestyles has taken the lead in applying this feature of the act with a service that brokers the life-insurance policy to a qualified buyer, then provides a negotiated percentage of the policy's value in a check to the terminally ill person. Because the money can be used for any purpose, the dying person can maintain dignity of choices and financial independence even in the face of terminal illness. Access to cash without draining family savings or other assets can make an enormous difference in quality of life for a terminally ill employee.

By being proactive, HR not only honors the dying employee, but also protects the company. Dale recalls a situation in which an employer didn't guide the dying employee to put his paperwork in order. Consequently, documents that should've been signed over to his wife were left unchanged. After the funeral, the screaming widow, whose assets had been frozen, stood in the work area denouncing the employer, threatening a lawsuit and yelling at other employees while furiously cleaning out her late husband's desk. Everything HR has learned about badly managed layoffs should be a source of insight about what can happen in this situation. An imminent death doesn't have to derail the workforce. On the contrary, knowing more, earlier, helps HR anticipate the cycles of grief and plan accordingly.

Maintain employee dignity—socially and programmatically.
There are many ways HR can help a terminally ill employee retain his or her dignity. At the very least, HR should try to exercise creativity, confidentiality and flexibility. Maureen Siegel, chief of the Criminal Division in the Los Angeles City Attorney's Office, recalls when Bill Tassie, a recently married, highly skilled attorney in his early thirties, told her he was dying of Crohn's disease. (Crohn's disease is an inflammation of the digestive tract, usually the intestine, that often spreads to the colon. It is characterized by diarrhea, cramping, loss of appetite and weight loss with local abscesses and scarring.) The illness robbed him of the ability to be a contributing member of the office and eventually led to the establishment of the company's time bank.

But Tassie worked at the office longer than he should have-out of concern about losing his health-insurance coverage, says Siegel. That decision wasn't in his or the city's best interests. Now that the time bank is in place, other employees facing terminal illnesses have been able to take leave and receive pay. "They don't have to use disability leave and incur those limitations," Siegel says, praising Tassie's inspiration. "There's something to be said for employer-employee loyalty, in both directions."

Perhaps no other life event has the power of a terminal illness to isolate a person and relegate him or her to life's fringe.

Siegel says Tassie's death wasn't her first encounter with a terminally ill employee. She often reflects on other losses in the Criminal Division during her tenure: a mother of a newborn who died from breast cancer, several attorneys who died from AIDS, another young mother who was lost to ovarian cancer. Siegel's voice cracks as she describes the emotional pain managers feel when the work group is close: "When you lose them, it cuts a piece out of your heart. These employees have given the best years of their productivity to us, and we need to give something back."

Another way to maintain dignity is to maintain employee confidentiality. Even when the dying person has disclosed the condition to colleagues, that's not blanket permission to discuss every treatment and every indignity visited upon the person by the illness. When an employee shares his or her vulnerability, co-workers should allow the privacy they would want for themselves.

Another key element in assisting the terminally ill is flexibility. Although Hamilton was unable to return to his job in the shipping department, Terry already had decided that if Hamilton could return, he'd create a less physically strenuous position for him at the same rate of pay to help maintain his dignity during the remaining months. This is the sort of decision that may cause some to worry about setting a new precedent. James A. Autry, author and former Fortune 500 executive and holder of the Dean Helen LeBaron Hilton Chair in Leadership at Iowa State University in Des Moines, insists, "Don't worry about precedent. Leadership must be of people, not of groups," he says. "You don't have to treat everyone the same. You have to give everyone fair and equitable treatment. A culture of prohibition creates worry about [setting] precedent."

Managers, he says, need the self-confidence to respond to situations individually. HR should call in the rest of the team, lay out how things are going to work and also inform the dying person when things aren't working. "You have to say, 'I believe in you, but it's not working. What else can we do?' It's so hard to be honest. It's so hard to say, 'You're not doing a good job.'" Even better is to plan for contingencies with the terminally ill employee. By including him or her in the transition process, he or she will gain a sense of closure and preparation for what follows.

Anticipate setbacks; ensure succession planning.
In many situations, the dying employee may overestimate his or her ability to remain on the job. Then the HR professional needs to help the terminally ill employee and co-workers handle the sensitive transition—outside and inside the office. Outside, co-workers can set up a schedule of visits. They can be encouraged to call once a week to chat and keep the employee aware of company news. Linda Goldman, a certified grief therapist in the Washington, D.C., area and director of the Center for Loss and Grief Therapy, suggests that, with the dying person's permission, co-workers may create a ritual that will "honor the person and sustain him or her in one's grieving." One group, she recalls "roasted" the dying man, who loved it. "It required courage from the dying person and from others, but people need to accept the individual's dying while honoring his or her living."

HR managers must also face the task of succession planning. It shouldn't take an imminent death to alert HR to the importance of carrying out a plan. "People move on for any number of reasons. Death is just one," says Siegel. "At our organization, we do succession planning all the time." In fact, the dying employee will be the best one to know what's needed when he or she no longer is there.

Autry has observed and participated in a number of successions due to terminal illnesses. At one company where he worked, managers were asked to participate in an annual exercise: They identified those employees who were ready or capable of being trained to take their place. "They weren't restricted to their own department," says Autry. From this annual list, HR developed a group that was considered the principal resource for future managers. "We set up a training program for potentials who weren't ready yet."

Clearly, the company benefits if the dying employee participates in the selection process. Co-workers see the individual being treated with respect and worry less about the replacement. The employee will also benefit because he or she will be active in passing on the acquired knowledge. However it's done, HR can get the sharp edge off through honest conversation. The best parties to be involved, says Siegel, are the incoming person, the outgoing employee, HR and the immediate supervisor. "Everyone should expect transitions as an ongoing process," she says.

Be both compassionate and resourceful.
When a terminally ill employee first informs the manager of his or her illness, the HR professional will want to be understanding. To be helpful, however, he or she will also need to be knowledgeable. Local and national organizations for a particular disease often have materials that can help people understand what the dying employee is experiencing. Hospice associations often have community counselors who can provide help to managers and co-workers. Industrial chaplains can lead kitchen cabinet groups and counsel co-workers individually. When the dying employee has a caregiver at home, HR can provide a referral to a caregivers' association. For employees facing AIDS, Clinical Partners, a West Hollywood, California-based organization provides a case-management program that helps employers contain medical costs while offering a range of counseling services to the employee and co-workers.

Max DePree, chairman of the board for Zeeland, Michigan-based Herman Miller Inc. refers to "secondary sufferers," of which HR and co-workers are examples. Secondary sufferers are those who ache for the dying employee and who may be picking up additional work because of the person's illness. They need support and someone to talk to; they may need group meetings with a hospice program counselor or a hot line they can call to vent their feelings to a compassionate third party. They need someone outside the company who will help them through their own suffering.

Perhaps no other life event has the power of a terminal illness to isolate a person and relegate him or her to life's fringe. Who's better positioned than the human resources professional to honor the dying employee? It's understandably awkward because no one wants to offend the individual. But standing by and ignoring death is actually harder on the living.

Experts advise co-workers to say things such as "I'm here for you if you need to talk"; "Help me to understand what this is like for you"; and "I'll be here for you whatever happens." It all boils down to compassion and resourcefulness. Autry summarizes this important role of business in a dying employee's life in his book, "Confessions of An Accidental Businessman": "I believe there is no stronger affirmation of the meaning of work in people's lives than the intense desire of dying people to keep working. How does the manager support that person while still making sure the work gets done? Beyond that, how does the manager honor and recognize that the presence of this struggle every day in the workplace is just terrible for everyone else's morale? There just are no absolutes in determining how to lead people through these situations. Sometimes I think that business educators believe that if a management problem can't be charted or graphed or analyzed, and a solution put forth as a procedure or process, then the problem is not really a business problem. Any manager with real-life experience knows, however, that the most challenging situations require our wisdom, not our knowledge."

Workforce, May 1997, Vol. 76, No. 5, pp. 58-67.

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