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Preparing for the final chapter

Lynne Shallcross October 1, 2012

The adage is famously familiar: Nothing is certain in life except death and taxes.

Few counselors moonlight as accountants, and surprisingly few counselors address the subject of dying with clients, even though Thomas Nickel says they are well suited to do so. Nickel, the executive director for continuing education at Alliant International University (AIU), isn’t talking about helping clients who are grieving the loss of a loved one. He is referring to helping clients come to terms with their own mortality — a topic Nickel contends largely gets pushed to the background in our society.

Don’t believe it? Walk into a library and you’ll find entire shelves devoted to the subject of bereavement, but you’ll be hard-pressed to find more than a handful of books that focus on dealing with our mortality, says Nickel, who presented a workshop on preparing for end-of-life issues at the American Counseling Association Annual Conference & Expo in San Francisco earlier this year.

Medical advances during World War II introduced new possibilities for prolonging life through medical interventions, Nickel says. But as medicine and technology have continued to advance, “the human side [of the end-of-life process] has taken a backseat,” he says. Nickel calls this “the heart” of the matter as it relates to end-of-life planning, and he emphasizes that it is an element counselors would be wise to understand. “How the use of extreme technology at end of life has come to be the default approach is a matter of economics and national policy,” he says. “Counselors need to know [this] precisely because [the use of medical technology to delay death] is the default — what will automatically happen if nothing is in place to direct otherwise. Since many people ignore these matters or are in families that do not agree [on how to proceed], the default option — lots of medical technology — happens much of the time, whether people actually wanted it or not. Counselors can encourage people to think proactively as part of a wellness maintenance approach. It can increase anxiety at first to even consider end-of-life treatment, but if it’s done well, the end result is much less anxiety and a sense of self-efficacy and completeness.”

In Nickel’s view, the wellness aspect of end-of-life planning makes counselors uniquely suited for this niche. Because dying is a natural rather than a pathological process, counselors can help clients seek wellness and balance, even in preparing for their own death, he says.

“The way people maintain a sense of dignity and poise in [the dying process] is to focus on whatever areas of quality are still available. Not to deny the mounting list of bummers, but also not to dwell on it — to put more attention on appreciating what is still worthwhile about life. Counselors are trained to help clients find this balance and maintain it,” says Nickel, who has created an online course called “An Instructional Design for Dying” through AIU. The university offers both classroom and online courses on the topic for mental health professionals, as well as continuing education credits and a certificate in end-of-life preparation.

James Werth Jr., a professor of psychology and director of the doctoral program in counseling psychology at Radford University in Radford, Va., also sees the value of counselors addressing issues of death and mortality with clients. “Counselors typically have been taught to view people as whole beings, not just as a medical or psychiatric diagnosis. Thus, they naturally take into account that a person nearing the end of life may have physical and psychological concerns as well as interpersonal and spiritual issues, may be experiencing some societal influences on her or his decision-making, may have regrets about her or his career and so forth,” says Werth, a member of ACA who co-authored a literature review of end-of-life counseling for the Spring 2009 issue of the Journal of Counseling & Development.

Despite the need to address these issues, Nickel says counselors probably haven’t run across many clients seeking their help in this area. “People don’t tend to go to counselors saying, ‘I’m having trouble with my mortality,’ and it’s not easy to bring up the subject,” he says. “People say they know they need to talk about and plan for end of life, but most don’t get around to it.”

However, Nickel says, that situation is ripe for change, at least in part due to the aging of the baby boomer generation. Baby boomers have a “tendency for high involvement,” Nickel says. He suspects that might translate into more counseling clients wanting to take an active role in their end-of-life planning in the coming years. Nickel thinks counselors who seek specialized training in this area will be well positioned to fill an emerging niche.

Regrets and possibilities

People typically begin thinking about their own mortality at two main points, Nickel says — when they receive a life-threatening diagnosis and when someone close to them has died or is in the process of dying. As the front end of the baby boomer generation moves through its 60s, many of its members are experiencing their own medical diagnoses even as they watch their parents aging and dying.

Large-scale tragedies can also spur people to face their mortality, Werth says. “After 9/11, all of a sudden people started saying, ‘Wow, you never know what’s going to happen. That could have been me.’ That can lead people to thinking, ‘Do I have everything in place?’ After 9/11, we saw that fairly frequently.”

Topics clients deal with when thinking about their eventual mortality range from the emotional to the practical. Regrets and possibilities are the main focus for many clients, says Werth, whose book, Counseling Clients Near the End of Life: A Practical Guide for the Mental Health Professional, is due out in December from Springer Publishing Company. He says counselors who can work through those issues with clients can help them gain peace of mind.

“In my work with people with chronic and terminal illness and their loved ones, I often heard them say, ‘What if I had …’ or ‘If only I had …’ or ‘I wish I would have …’ The focus was frequently on regrets or things that they had not done, so instead, I tried to help them refocus on what was still possible and what could be done,” he says. “That way, they had a chance to say everything that they wanted to say before it was too late. Of course, we focused on the fact that they only had control over themselves, not over how others responded to them, but at least they wouldn’t be on their deathbeds saying, ‘I wish I would have tried to mend fences with my son,’ or after a parent’s death, a child wouldn’t say, ‘I wish I would have told Mom how much I loved her.’”

In Nickel’s experience, people confronting their own inevitable death are often seeking two things: a sense of completion, often tied to interpersonal relationships, and relief from their anxieties about death. “Counselors can help people achieve the sense of completion that they’re seeking by assisting them in coming to terms with the life they have lived, their disappointments and achievements, and, if necessary, in saying or doing something to help heal important relationships,” he says. “Sometimes, not always, things that people have struggled for years to say can finally be said at the end of life. End of life is an exceptional time. Normal patterns of behavior can change. There is great potential for resolving issues that have endured for long periods of time. Counselors can be present to listen and to remind [clients] that things can be done to address these issues, such as reaching out to someone to apologize. The goal would be to help clients acknowledge their regrets without guilt, which people tend to be more able to do as they approach the end and face their own mortality.”

Other people experience anxieties related to what the dying process might be like, Nickel says. For instance, some clients are scared they might feel unbearable pain. Nickel says counselors can remind these clients that pain involves subjective interpretation of nerve signals, so it is something the mind can influence. Counselors can help clients learn a variety of mental techniques, including meditative methods, that may reduce or eliminate pain in many cases, he says. Having skills they can practice and build on beforehand in case they do experience pain as they are dying reduces anxiety for some clients.

For others, the prospect of dementia is frightening. Nickel says counselors can help clients who are still fully competent to explore how they feel now about being kept alive at certain stages of dementia in the future. “Counselors might have clients describe a point at which they might rather begin a natural dying process,” Nickel says. “One organization, Caring Advocates, has even developed a set of illustrated cards depicting a range of cognitive and emotional conditions specifically to help counselors and clients consider these issues in depth. The work that is done can be saved and used to produce a living will, which carefully documents a client’s wishes. In other words, by planning now, a legal foundation can be created to avoid unwanted measures later for extending life.”

Making decisions in advance

The topic of when a person might want to begin a natural dying process is where advance care directives, which can include living wills and powers of attorney, come into play. Both Nickel and Werth say counselors can seek training in order to help clients create these directives for themselves. According to the U.S. National Library of Medicine, advance care directives “allow patients to provide instructions about their preferences regarding the care they would like to receive if they develop an illness or a life-threatening injury and are unable to express their preferences. Advance care directives can also designate someone the patient trusts to make decisions about medical care if the patient becomes unable to make (or communicate) these decisions. This is called designating ‘power of attorney (for health care).’”

“There are no right or wrong [answers],” Nickel says about creating a living will. “The important thing is to cut through some of the anxieties, get in touch with what you want and make sure that it’s legally written down.” A living will should not be completed hastily, Nickel says, but instead approached carefully, both by counselors and by clients. In addition, the directive should be reviewed periodically to make sure the client still feels the same way about end-of-life decisions.

If clients decide to designate a power of attorney, Werth says, counselors should suggest that the clients talk with the chosen power of attorney about their wishes, as well as inform their family of those wishes. “It’s important to have the conversation with other family members that ‘I’m asking Jean to do this, and this is what I want,’” Werth says. The counselor might invite a client and the client’s family into session to discuss the person’s decision, or the client might choose to have that conversation with his or her family in private, Werth says.

Even the topic of inheritance can come up in a counseling session, Nickel says. “It’s not really about who’s going to get Grandma’s table; it’s about a lot more than that,” he says. If clients desire it, counselors can invite families into session to have those discussions as well, Nickel says.

Facilitating sticky conversations such as those about end-of-life decisions or inheritance is what counselors are trained to do, and each counselor will have his or her own approach, Nickel says. “In general, all counselors will know techniques like setting rules for the discussion, making overall agreed-upon goals [and] having an outside facilitator such as the counselor present,” he says. “The art is in applying the right approach the right way at the right time. Questions around inheritance and helping families in this area can involve putting out fires that are already spreading. It’s important to make a distinction at the start [whether] a counselor is present as someone’s therapist or as a neutral facilitator — there to help the family communicate about difficult topics.”

Tools to help

Many counseling approaches can apply when clients are struggling to come to terms with their own mortality, Nickel says. A “counselor might help a client identify a few important relationships to start with and then to very clearly state what is needed in order to feel complete with each one,” he says. “The strategic part is then to help the client describe something that can be done to represent that act of completion. It might be symbolic [or] it might be sacrificial.”

Cognitive behavior therapy and solution-focused approaches can be helpful because they focus on the present instead of the past, Nickel says. “I don’t personally think that a lengthy analysis of one’s past is really what’s called for,” he says. “We need to act on [any issues] to get beyond [them].” He says the completion process might also involve getting rid of trauma, which may call for trauma-processing therapies such as eye movement desensitization and reprocessing or exposure therapy.

Narrative forms of therapy can also be beneficial, Nickel says. “[That] would focus more on having clients tell stories to create the record they want to leave and to pass along messages about what they feel is important,” he says. “Parts of what clients do would be in session, but a lot would not have to be.”

Meditation is yet another tool to offer clients. “Meditation tends to reduce emotional reactivity, which can help some people tolerate the negative emotional reaction to the thought of their own death,” Nickel says. “Meditation can [also] play a role in pain reduction, which is what many people say they fear most about end of life.”

Werth points to the effectiveness of dignity therapy, especially with clients who are going through the dying process. “Dignity therapy was designed by Harvey Chochinov and colleagues to provide dying people an opportunity to shape their own legacy for others,” Werth explains. “The therapist asks the ill person a series of questions in order for her or him to talk about the important parts of her or his life, key memories and people, and so forth in order to prepare a document for loved ones to have after the person dies. The research has indicated that this can be helpful to reduce the distress and suffering of dying people.”

Meaning-centered group therapy is another potential approach. “William Breitbart and colleagues developed meaning-centered group therapy from Viktor Frankl’s work discussing the importance of having meaning and purpose in life,” Werth says. “It was originally done in group format but has been adapted for individuals too. There can be a link to spirituality in the work, which helps to ensure that this important part of people’s lives is not inadvertently left out of the discussion. The focus is on helping people live their lives to the fullest in the time they have remaining.”

Werth adds that existential therapy can also make sense for these clients because of its link to finding meaning. “Frankl’s work on meaning is considered existential,” Werth says. “In addition, [Irvin] Yalom’s discussion of existential therapy focuses on four ‘ultimate concerns of life,’ all of which are clearly related to end-of-life matters: isolation, meaning/meaninglessness, freedom and responsibility, and death. By helping people address each of these areas, especially their fears, we can help them be active participants in the dying process instead of feeling powerless and out of control.”

Getting prepared

It is crucial for counselors to focus on their own self-care before seeking to work with clients who are facing issues surrounding mortality, Werth says. “Many counselors like to see change,” he says, “[but] when someone’s dying, we can’t change that. Hopefully we can help them have a better quality of life, but it can be overwhelming to hear what’s happening to [them].”

Staying mindful of how working with this population can affect them, counselors might choose to strike a balance between seeing clients who are dealing with issues of death and mortality and those who are not, Werth says. Counselors immersed in these issues should also be careful to maintain a good support system, take time off, engage in hobbies and be intentional about appreciating what they have in life.

Counselors also need to develop an awareness of the topics likely to push their buttons before working with this group of clients, Werth says. “If [clients] start talking about lung cancer and my grandmother died of lung cancer, and then that’s all I’m thinking about, I’m
not being of much help,” he says.
Getting consultation after beginning to work with these clients can prevent additional personal issues from cropping up, Werth says.

Counselors are already equipped with many of the skills needed to work with these clients, but Nickel says additional training specific to end-of-life issues is necessary. For example, counselors should seek training in advance care directives, he says. “Some very simple care directive forms may be sufficient for some circumstances, but not for all,” he says. “The more you document, the more you reduce uncertainty. I believe that counselors working with clients at the end of life should know about a range of care directive approaches and be able to recommend a few options that best suit each individual and family.” Nickel suggests counselors consider looking at the Physicians Orders for Life-Saving Treatment, a national initiative adopted by many states, as well as Natural Dying Living Wills, an approach by Stanley Terman of Caring Advocates that also addresses Alzheimer’s and dementia.

Learning how each of the major religions views the end of life is also helpful, Nickel says, as is learning different cultural expectations and traditions. For example, if an Asian American mother has just been given a cancer diagnosis, it would help to know that many Asian cultures are more collectivistic in nature, Nickel says. This means the counselor might need to focus on the whole family rather than assuming that the mother will be the sole or primary decision-maker concerning end-of-life issues.

Werth says counselors also need to be aware of the ethical and legal issues involved in this area of counseling and points out that the ACA Code of Ethics addresses end-of-life care for terminally ill clients (see Standard A.9.). Counselors should also become familiar with any legal requirements regarding confidentiality after a client dies. Werth also suggests including any legal and ethical statements concerning confidentiality related to end-of-life care in informed consent documents.

Although Nickel says baby boomers may one day change the landscape, clients aren’t currently beating down counselors’ doors and asking to take proactive measures to prepare for their end-of-life experiences. If counselors secure some training in advance care directives, though, Nickel thinks it might open new doors of opportunity to help people prepare for end of life, both emotionally and practically. Counselors could let their current and former clients know that they have the necessary training to help create advance care directives, Nickel says. “It’s a good, concrete thing,” he says. “A lot of things come out once you start the process, but that’s a good way to begin.”

 Lynne Shallcross is the associate editor and senior writer for Counseling Today. Contact her at lshallcross@counseling.org.
Letters to the editor: ct@counseling.org

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