End-of-life counseling is an important area of our profession. Unfortunately, it is also an area of the profession that is underdeveloped and seldom researched. Consequently, few resources are available to professional counselors that specifically address multicultural competence in end-of-life counseling.
I first became interested in end-of-life counseling while working as a bereavement program manager and counselor in a private hospice setting. As a bereavement counselor, I worked not only with the families of patients receiving hospice services but also with higher risk patients (those who struggled with psychological and physical pain). The private hospice organization provided social services for patients, but our social workers had large caseloads and found it difficult to meet the emotional and psychological needs of patients and family members who required ongoing therapeutic intervention. To meet those needs, I developed an end-of-life counseling program in which I personally worked with patients and family members deemed medium to high risk.
I currently practice counseling at Sea Change Therapy PLLC, where I help individuals who are struggling with life transitions, including the end of life. In addition to my clinical practice, I am conducting research in end-of-life counseling under the advisement of my dissertation committee at North Carolina State University.
The list of reasons for counseling at the end of life can be similar to the reasons that individuals seek out counseling earlier in life. The largest difference, of course, is that with end-of-life counseling, the client is facing his or her death. This makes this area of counseling all the more challenging. Because these clients die at the end of counseling, counselors are responsible for so much more than just helping clients pursue improvements in a relationship or changes to an existing issue. Counselors are helping these clients achieve goals that may improve the possibility of them experiencing peace before they die. This is a major undertaking.
As an end-of-life counselor, I have witnessed the impact that clients’ lived experiences and aspects of their identity have on their end-of-life experiences. These experiences are personal, unique events that require counselors to be skilled in addressing a multitude of issues regarding both a client’s identity and the dying process. Multicultural and social justice competence is key to counselors being able to provide effective end-of-life counseling and help clients navigate end-of-life experiences successfully.
The Multicultural and Social Justice Counseling Competencies (MSJCC) endorsed by the American Counseling Association are a set of guidelines for developing and maintaining multicultural and social justice competence as counselors. The MSJCC framework aids in understanding the complexities of the counseling relationship, specifically with counselor–client interactions. The MSJCC support counselors in addressing issues that are often not well-recognized but that have a significant impact on the client. These issues include power dynamics, privilege and oppression. The MSJCC are well-supported by our profession and are a very useful tool for promoting cultural competence for counselors.
The Handbook of Thanatology, a resource created for practitioners by the Association for Death Education and Counseling, provides detailed, thought-provoking suggestions on how to be culturally competent when working with clients at the end of life. The handbook includes a combination of research findings, practical implications and recommendations for end-of-life practice.
Using the MSJCC and suggestions from the Handbook of Thanatology, counselors can ensure that they are providing culturally competent and effective end-of-life counseling services to their clients. Using these references, along with information from my professional experience as an end-of-life counselor, I have developed a simple framework for culturally competent end-of-life counseling practice.
Education is an important component of culturally competent practice. Continuing our education beyond the completion of the master’s degree requirement is necessary for growth and effective practice in this field.
As professional counselors, we are required to complete a specific number of continuing education credits yearly to maintain state and national licenses. For many of us, a certain number of these continuing education credits are required in the area of multicultural competence. Continuing education in end-of-life practice is increasingly available, and there are many opportunities for growth across disciplines in this specialty area. For example, there are distance learning programs that provide thanatology coursework, including multicultural competence in end-of-life care. During my personal search for continuing education, I have come across numerous courses or sessions that are outside of the university setting. Professional memberships, local funeral homes, palliative care programs and medical facilities all offer continuing education opportunities, sometimes at little to no cost.
In addition to the more formal avenues for advancing your education, there are ways to learn and grow in the understanding of other cultures through observation, immersion and self-education. The Handbook of Thanatology says that if we want to better understand the beliefs and practices of a particular cultural group, immersing ourselves in that group can aid in this quest. Obviously, that approach is time-consuming and not feasible for all counselors. However, I would recommend, at minimum, that counselors observe and investigate the beliefs and practices of the clients (and clients’ family members) with whom they are working. Don’t fear asking questions that will improve your knowledge.
We are encouraged as counselors to be well-informed about what is going on in the world around us and to consider the ways in which events may affect our clients. For example, changes in health care coverage and policies can impact terminally ill clients and their families. Seeking out details on these changes and working to stay informed not only can help us to prepare for what our clients may be facing but can also provide us with information that could be important to pass along to our clients. Social, cultural and political developments may also influence our clients’ emotional and psychological states. It is important that we maintain an awareness of how these developments could affect clients from varying groups in different ways.
Possessing knowledge of both historical and current events — particularly those resulting in the oppression of a group of individuals due to their race, ethnicity, socioeconomic status, gender or sexual orientation — can help us better understand the lived experiences of our clients. Linking historical and current events can provide us with a clearer perspective on the adversities that our clients and their families continue to face. These adversities are woven into their personal narratives and are often revisited at the end of life. Our clients may want to remember the happy experiences they have had, but they may also recall the adversities they have confronted. Our clients’ worldviews, values, beliefs, and marginalized or privileged statuses (lived experiences) all have an impact on their perceptions of death and dying. In turn, their perceptions of death and dying have an impact on their end-of-life experiences.
Education is the foundation of culturally competent end-of-life counseling. Developing knowledge of the impact of history, events, culture, religion/spirituality and other influencers on our clients’ lived experiences can help us reach a better understanding of their end-of-life experiences. Possessing a solid knowledge base — and continuing to expand that base by seeking out educational opportunities — has a direct impact on the effectiveness of our practice as counselors.
This section of the framework is designed to be used in addition to the approaches and interventions that end-of-life counselors are already trained in and currently practicing. Like other areas of the counseling profession, end-of-life counseling is not limited to one single approach or a specific set of interventions.
Culturally competent end-of-life counselors embrace the fact that multiculturalism and social justice are central to end-of-life counseling. In culturally competent end-of-life counseling, counselors work to be aware of the many identities that counselors and clients possess, as well as their privileged and marginalized statuses. These identities and privileged or marginalized statuses enter into and influence how each individual will experience interactions that occur during the counseling relationship. Culturally competent end-of-life counselors skillfully facilitate discussions about these identities and statuses. They share information about their own identities, allow clients to explore their personal identities, and work to identify and overcome any barriers that may arise in the counseling relationship.
The knowledge that culturally competent end-of-life counselors possess and continue to build upon (addressed in the education portion of the framework) aids them in better understanding clients’ identities. Open dialogue about these identities can help counselors gain insight into an individual’s unique background. Through this work, clients may even come to recognize their diagnosis or terminal illness as a new identity or way in which they see themselves. When this happens, counselors can help clients examine this new identity and use interventions that are helpful in exploring clients’ perceptions of what this new identity means to them.
Occasionally during this time in the counseling process, clients will discuss experiences that led to their understanding of these identities. These experiences and others that are shared during counseling are the clients’ lived experiences, which may influence how they view themselves and their end-of-life experience. Making space for these discussions (or even initiating them) and asking questions to better understand our clients helps us to become more culturally competent counselors. As a result, trust is built between the counselor and the client, and the counseling relationship is enhanced.
In end-of-life counseling, these discussions usually take place early on in the counseling relationship. In fact, faster development of the counseling relationship can be more critical in end-of-life counseling than in other areas of counseling practice. Allowing opportunities for these discussions early on may greatly enhance the client’s comfort in sharing with the counselor and may aid in achieving the goals of counseling in the limited time available.
The ultimate goal of end-of-life counseling is to facilitate psychological and emotional healing that will allow clients to experience peace. Counselors and clients work together to identify sources of stress or any psychological disturbances (e.g., depression, anxiety) that are preventing the client from achieving peace. Reasons behind the presence of disturbances such as depression or anxiety may vary. Clients might express fear of death, a sense of isolation, a loss of purpose or meaning, struggles with feelings of guilt, conflict in relationships or other concerns. Occasionally, struggles in relationships, personal regrets, feelings around a loss of independence, feelings of loneliness, or emotions connected to experiences with racism, sexism, religious oppression or other forms of oppression may also surface at the end of life.
Culturally competent end-of-life counselors understand that clients’ lived experiences (inclusive of issues such as oppression and discrimination) are unique and personal and should be handled delicately. Providing a safe space for clients to express their feelings surrounding these experiences is an important step in helping them achieve peace at the end of life. This safe space is created early on in the counseling relationship through structure, support, encouragement and unconditional positive regard. It is enhanced when counselors effectively and openly discuss identities, privileged or marginalized statuses, and issues such as oppression and discrimination. Allowing space for the anger, frustration, sadness and other feelings that clients may feel when sharing about these experiences is very important.
The MSJCC emphasize the need for counselors to work outside of the office, meeting directly with the client’s family members and friends (with permission from the client) to determine what relationships exist that will either support the client’s progress in counseling or present barriers to change. With end-of-life counseling, counselors are more likely to work with the client outside of the office. This might include meeting in hospice facilities, nursing facilities, assisted living facilities, hospitals or clients’ homes. As a result, end-of-life counselors are occasionally afforded opportunities to observe interactions that clients have with their family members and friends. If clients have identified resolution of conflict in a relationship as a goal of end-of-life counseling, then counselors are able to intervene.
By facilitating these discussions early on in the counseling relationship, counselors can create the solid foundation necessary for various counseling approaches and interventions. Counselors should ensure that they are using approaches and interventions that are culturally appropriate and that empower clients.
Advocacy at the end of life can be complicated, but it is important that we make sure our clients’ voices are heard. End-of-life counselors often are responsible for updating the interdisciplinary team about the client’s emotional and psychological well-being and the progress being made in counseling.
The interdisciplinary team (sometimes referred to as the multidisciplinary team) generally consists of medical professionals (doctors and nurses) and a group of supportive services professionals that can include some combination of social workers, counselors, psychologists, and clergy or spiritual care counselors. These teams are usually organized and assigned through hospitals and palliative care/hospice organizations. Team members work together to ensure that they are meeting the needs of individuals enrolled in services. Team meetings can vary in approach, but in my experience, each team member is asked to provide an update on the services for which they are responsible, along with any concerns they have about the needs of the individual who is facing end of life.
As counselors, we are often uniquely cognizant of the emotional and psychological needs of our clients. This gives us the ability to identify additional issues that are affecting our clients’ well-being. We can share these concerns and challenges with the interdisciplinary team in many ways. For example, we can relay information about the progress our clients are making in sessions by tracking their levels of depression or distress via simple assessments and then presenting our data during team meetings. We can also bring up any concerns that our clients have voiced during sessions regarding their care or interactions with other team members.
Our role on the team also gives us opportunities to educate the other team members on cultural considerations. The cultural insights we provide may influence discussions that these other team members have with our clients and their family members. Because of our greater level of understanding of the lived experiences of our clients and the impact these have on our clients’ end-of-life experiences, we can provide guidance to the team on how best to provide individualized care to clients.
In our role as advocates, we can also give voice to our clients’ end-of-life wishes. This may sometimes require us to relay difficult and sensitive information (again, with the client’s permission) to family members, team members and caregivers. This might involve the client’s desire concerning the presence or absence of certain individuals during the end-of-life experience, the environment in which the person wishes to die, requests for final meals, the kind of medical care or interventions the person would like to receive, and so on. As advocates, it is important that we relay this information in ways that are sensitive while also being true to our clients’ voices.
In addition to our responsibility to give our clients voice, it is also important that we work to improve the understanding of the attitudes, beliefs, biases and prejudices that exist in our communities, not just in our places of work. Among the ways we can do this are advocating for policies and procedures that rectify existing inequities, offering additional support to marginalized clients, and collaborating with others to address issues of power, privilege and oppression in advanced care settings. Some examples of how these issues arise in advanced care settings include the ways in which information is relayed to marginalized clients and assumptions that all clients have strong support systems, the same knowledge of or experience in health care settings, and similar perspectives on the end of life. Providing education on culturally competent practice to others who work in end-of-life care can also serve as advocacy. Advocacy is a part of cultural competence, and it is an important role that end-of-life counselors can play for clients.
Key considerations for providing effective, culturally competent end-of-life counseling are as follows:
- Seek out educational opportunities that challenge and expand your understanding of multicultural and social justice issues in end-of-life counseling settings.
- Treat the “whole” client and not just the parts of the client with which you are comfortable.
- Integrate discussion of both the client’s and counselor’s worldviews, beliefs, attitudes, and marginalized or privileged statuses.
- Help clients explore their lived experiences and the impact these have on their end-of-life experiences.
- Advocate for clients by giving them a voice and pursuing social justice in end-of-life policies and practices.
Counselors should continue to strive to be culturally competent to provide the best services possible to our clients. Being culturally competent involves not just our professional selves but also our personal beliefs, values and worldviews. As we become more culturally competent and actively engage in multicultural and social justice advocacy, we will become more well-rounded, effective counselors.
Ashley C. Overman-Goldsmith is a licensed professional counselor, a national certified counselor, and a doctoral student at North Carolina State University. She is the owner and lead therapist at Sea Change Therapy PLLC. Her current research centers on honoring the lived experiences of terminally ill clients while helping these clients resolve issues that affect their end-of-life experience. Contact her at firstname.lastname@example.org or through her website at ashleyoverman-goldsmith.com.
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