Tag Archives: end-of-life

When counselors grieve: Witnessing a loved one approach death gracefully

By Suzanne A. Whitehead March 21, 2022

My wonderful, dear, precious mother is dying. She has terminal metastatic cancer, adenocarcinoma, that began in her colon and quickly metastasized to her liver. She first started experiencing periodic stomach pains in early 2019, but numerous tests and exams divulged no significant results. We were concerned for her but felt relieved when all tests came back negative. It is with her gracious permission and indominable spirit that I relay our story.

When the global COVID-19 pandemic shut the world down in March 2020, we sheltered in place as most Americans did and prepared to ride out what we hoped would be a short storm. I was teaching remotely from home, and as the coordinator of a counselor education program, I was blessed to be able to make the final decisions on that front. As May 2020 rolled around, my mother complained off and on of more stomach discomfort, but it would quickly fade and was nonspecific. On May 18, however, she woke with great discomfort in her belly. A trip to the doctor led to more tests, and we were finally able to schedule a barium swallow exam for early morning on May 20.

My mother endured the pretest liquids with great difficulty but was eventually able to have the test completed. She came home with us, feeling exhausted and very nauseated. The vomiting soon ensued, and she became increasingly uncomfortable. Our alarm grew after making frantic calls to the doctor throughout the day and taking a resultant trip to the emergency room in a neighboring city.

After my mother had a thorough examination, a surgeon was consulted, and a blockage was located in my mother’s large intestine. Papers were hurriedly signed, and we kissed my mother goodbye. Due to COVID-19 restrictions, no one could stay with her. My mother was 94 at the time and scared to death to face the operating room alone.

The surgeon called us close to midnight. My mother had made it through the surgery OK and (miracles as well) did not need to have a stoma or colostomy bag put in. The surgeon believed he had been able to dissect the entire tumor but would have to test the margins of course. This was a slow-growing tumor, he told us, and my mother had probably had it for some time. Due to her advanced age, even if it ever spread in her colon, she might actually pass away from something else entirely. So, not to worry, he said.

Recovery in the hospital was a nightmare. The first night went well, but my mother had sadly aspirated the next morning and wound up with pneumonia. The medical staff was trying its best to help her, but that becomes trickier with advanced age. My mother is a bit hard of hearing, has short-term dementia-related memory loss and can be a very feisty Italian lady. She stands all of 4 feet, 4 inches and has severe osteoporosis that has resulted in very pronounced scoliosis of her spine. Therefore, she cannot, lie flat and must have the head of her bed propped “just so” to even sleep. I learned later that the medical staff had called the crash cart twice for her, almost losing her in the process.

I tried frantically to get answers as my mother seemed to linger but not improve. Several days went by, and numerous “hospital specialists” were assigned to her case, but none realized all the nuances of her interwoven symptoms. My first career in life, before I became a substance use disorder counselor, school counselor and university professor, was as a respiratory therapist. The names of some of the equipment have changed over the years, but not a person’s anatomy and metabolic processes. I was therefore able to keep up with the physicians regarding the dire circumstances of my mother’s respiratory acidosis, lowered PO2 oxygen levels in her blood, and the infiltrates and atelectasis in her lungs.

The head medical staff finally acquiesced on my mother’s eighth day there, and they let me visit her. My counselor training helped profoundly in working with everyone in her care. My mother was quite in distress when I first arrived, but as is often the case with family visits, began to thrive. The nursing staff said I had to stay put in her room, and they brought me meals and provisions. By the second day, I had her up walking. I swapped places with my grown daughter, and by the fourth day, they said we could take my mother home. It was indeed a miracle that we were able to wheel her out of the hospital.

Twists and turns

We took the rest of the summer of 2020 to help my mother recover. It was slow going, but she gained strength each day. It was decided that the fall of 2020 would be taught remotely at my university, so I looked for a wonderful place for her to convalesce. I was incredibly fortunate to find a condo for rent right on the ocean, and we spent the month of September sitting by the ocean, taking long walks on the beach, watching the boats sail by, and loving every minute of life.

My mother was feeling stronger by October and was even cooking again, which is her favorite pastime. A monthly checkup raised some concerns, and more tests were ordered. To our heartbreak and dismay, the cancer had massively invaded my mother’s liver and was voracious. Her oncologist suggested chemotherapy medication that she could take at home but, sadly, it would perhaps prolong her life by only a few weeks or months. There was no cure or other treatment.

My irascible and feisty mother said she wasn’t ready to give up, so we began the ritual of chemotherapy pills at home just after Thanksgiving. She seemed to tolerate that well until just a few days after Christmas. The pills had reduced the size of her tumors, but she became quite toxic to the point of having constant diarrhea, vomiting and not eating.

January 2021 rolled around, and my mother was still quite ill from the chemotherapy. With incredible strength of will and sheer grit, she fought on and finally began to feel a little better by the end of the month. Her oncologist introduced the chemotherapy again, but at a lower dosage, and she tolerated that well.

By June, her tumor marker blood tests showed that they had been reduced by over half. That was indeed remarkable in and of itself. Her oncologist had thought in October 2020 that my mother might possibly live up to another year; by June 2021, she seemed to be thriving. Incredibly, we were able to bring her to Hawaii that month, where I was presenting at an international conference that had been postponed from the year before. We were so very blessed to have that conference occur during the brief “sweet spot” when COVID-19 seemed to diminish a bit and the delta variant had yet to arrive. The trip was glorious. Several family members joined us, and we were able to visit many places we had gone to when we lived on Oahu a few years previously.

Early July brought another jolt of reality when another severe colon obstruction landed my mother in the hospital. After six days of intense, painful therapy and tests, my mother was slated for additional surgery. Her physician was extremely cautious and tentative about her prognosis. Literally, at the eleventh hour, just before her scheduled surgery, the treatments they had given her began to work. Another miracle had occurred! Three days later, we were again able to wheel my mother out of that hospital, without more surgery. It was a day to celebrate.

Sadly though, by September, her blood tests revealed that her tumors were growing again with a vengeance. The painful decision to stop the chemotherapy was agreed upon, because by then it was doing her more harm than good. Fall 2021 also had its extreme joys, however, as we were able to celebrate our daughter’s very tiny, but beautiful, wedding on Nov. 6. My mother was able to stand up for her as the matron of honor; it was a poignant and blessed day for all.

The long goodbye

The holidays have now come and gone, and again I marvel at my dear mother’s strength and perseverance. Despite our fastidious precautions, with all of us getting the vaccines and booster shots, COVID-19 entered our home in early January, and we all became infected with the omicron variant. It is a true testament to my mother’s will that even COVID-19 cannot stop her. Her symptoms resembled that of a bad cold — something else she could have done without. Thankfully, however, she made it through that horrible hurdle too.

Painful realities remain though, and we all agreed in late January that the time had truly come to begin the hospice process. I have never had hospice services for a loved one before, and there was a lot to learn. Some of the realities were quite painful, such as that my mother cannot see her established physicians any longer. We’ve also been asked several times to consider a “Do Not Resuscitate” order; we’re not quite there yet. I am reminded once again that death and dying is a process, not an event.

A plethora of nurses, social workers, delivery workers (bringing oxygen tanks, shower supplies and comfort meds) and a minister for spiritual support have come to visit. The very slow reality of the long goodbye is now at hand. As a counselor and university professor, I “know” about self-care, the many aspects of grief and loss, the need for continued support, and the existential angst one feels when realizing that nothing else can be done. It is an empty, hollow feeling that begets profound sadness.

I am extraordinarily blessed with wonderful family support. My husband and I have three grown children (two of whom are nearby and one six hours south), a wonderful son-in-law and daughter-in-law, and two amazing grandchildren. My university colleagues have been immensely supportive, as has my faculty and staff. I have the dearest friends one could ask for but, sadly, most are a great distance away. The miracle of iPhones and the internet have helped with that.

The pandemic has brought innumerable obstacles and immense sadness, pain, distress and heartache to us all, in one form or another. For us, it has meant that the last remaining months and days of my mother’s life must be limited to home. Yet serendipitously, I have been given even more precious moments at home with her. The days of shopping together, visiting nearby museums, going on short camping trips or talking for long hours at a lovely luncheon spot have all ceased. Instead, the tiny joys of taking an afternoon walk, watching a great movie together or enjoying the sunshine and warmth on our faces have taken on greater significance.

I marvel at my mother’s internal strength, her spirit and her deep love of life. I sit in despair sometimes as I watch her try to catch her breath, see her moving much more slowly, and recognize the distant look in her eyes; I wonder where she has drifted off to at times.

We talk often. She shares her innermost fears, regrets (blessedly, very few), and final wishes with me. These are sometimes painful talks, but they are necessary, cathartic, and I let her choose her timing.

I find myself walking with great trepidation down the long hallway to my mother’s bedroom in the morning when I haven’t heard her stir yet. Will I at some point just find her gone, peacefully? Will she have to suffer greatly (I fervently pray that she doesn’t), as my dear father — her husband — did from cancer so many years ago? Will I be able to let her know how very, very much she has meant to me, how much she is so dearly loved by us all? Can I properly express that without her, I never would have become the counselor, teacher, mentor and social justice advocate that I am? My family and I have been blessed by her comfort, wisdom and beautiful spirit for close to 96 years now. Letting go by inches is so incredibly difficult …

A shared reality

So many of my dear counselor colleagues, friends and students have lost loved ones due to COVID-19 over the past two years. We have shared this reality as human beings, and together we mourn each loss. I have been honest about my mother’s condition with all of them so that they realize that even counselor educators deal with grief and loss. I teach all my students about the vital importance of knowing your limitations, knowing when to reach out for support, knowing when to step back and take a break, knowing when you are not at the “top of your game,” and knowing that it is OK for us to be fully human.

Perhaps putting my thoughts into words here is just my way of doing so. I hope that for those who have endured or are enduring similar circumstances, my words can offer some support, connection and solace. It is our humanity and spirit as counselors that binds us.

So too, as counselors, each of us has helped dozens, if not hundreds, of people cope and work through their grief and loss. It is part of our very nature. It is what we do, and we are honored to do so. We have learned our craft well and know what to say, how to say it and how to sit with another human being during their profound sense of pain and despair. We must make that kindness and compassion that we so freely give to others available for ourselves as well.

My mother is dying with grace; I am learning from her strength to honor her journey thusly. I will grieve horrifically when she passes. She has asked me not to grieve so, but that would be impossible. What a gift she has been to my entire family, that she even worries about how we will feel once she is gone! The price we pay for loving someone so fully, so unconditionally and so openly is to grieve their passing with our whole heart, soul and being. To have been eternally blessed with her love, I would not have it any other way.

Leon Seibert/Unsplash.com

****

Suzanne Whitehead is an associate professor and the program coordinator of the counselor education program at California State University, Stanislaus. She is a licensed mental health counselor, a retired school counselor and a licensed addiction counselor. Contact her at swhitehead1@csustan.edu.

****

Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Culturally competent end-of-life counseling

By Ashley C. Overman-Goldsmith May 1, 2019

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

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.

Practice

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

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.

Summary recommendations

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.

Conclusion

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 seatherapychange@gmail.com or through her website at ashleyoverman-goldsmith.com.

Letters to the editor: ct@counseling.org

Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, go to ct.counseling.org/feedback.

****

Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

The caregiving conundrum

By Tia Amdurer March 12, 2019

The branch of therapy that deals with anticipated loss due to death is a specialization that often gets overlooked. As a counselor who works with anticipatory grief and has five years’ experience in a hospice bereavement office, I have found that primary caregivers usually need guidance and support but don’t ask for it until they are completely overwhelmed. Counseling for end-of-life caregiving is very much an area in which good therapists can make the difference.

Current Medicare standards for hospice do not cover the cost of a bereavement specialist for family members of a dying patient. Unless the family or caregiver seeks an outside therapist, chaplains and social workers affiliated with assisted living facilities or hospices become the de facto mental health experts, juggling family dynamics, anticipatory grief, medical regulations, spiritual concerns and the patient’s care plan.

Caregivers: The unsung heroes

Whether end-of-life care is being given in a home or a facility, caregivers can grow overwhelmed by the physical and emotional toll of their responsibilities. They may start showing signs of anticipatory grief, including mourning the loss of their role and relationship and fearing the future. This can be coupled with anger at the isolation and abandonment by others, bitterness at the exhaustion, frustration at the never-ending demands, shame for wishing caregiving were over already (which would mean the patient’s demise), helplessness at being unsure about what they should be doing and sadness at the way that time is running out.

In my book Take My Hand: The Caregiver’s Journey, Chris Renaud-Cogswell offered written reflections on her emotional overload with caregiving responsibilities: “I’m so jealous of all of you who enjoy your parents’ company and treasure the time you have with them. When do I get past the ‘I can’t believe this is my life,’ regretful, resentful stage? I have never used the F-word as much as I do since my mother moved in.”

Guilt seems to be the emotion that rises to the surface most often for caregivers. Even in the most “functional” homes, the intensity of caregiving can be enormous. For example, a spouse may not be capable of doing everything but still feels responsible for the care of his or her sick partner. Conversely, partners in good health may feel weighed down by the extreme change in their role and lifestyle. Adult children who are working or raising kids themselves can feel put upon to do more and angry that their time is so limited. Those caring for an elder may find old childhood resentments bubbling up. Relatives who might like to visit don’t know how to help. Asking for help triggers additional feelings of guilt and frustration among caregivers.

As grief counselors, we listen to recitations based on a lifetime of behaviors and try to help put boundaries in place. We validate and remind clients that they are doing the best they can under trying circumstances. Caregivers may struggle with the history of a poor relationship with the patient. These interpersonal dynamics are likely to continue being problematic. For many families, a storybook resolution or a full sense of forgiveness might be difficult to achieve.

One middle-aged man paid a daily visit to his dying father, who had a long history of being abusive and battling alcoholism. Despite the visits lasting for four or five hours, the man refused to interact with his father. Instead, he sat in a chair, played games on his phone and felt guilty. A daughter who had been constantly rejected by her narcissistic mother reacted by directing her frustration at staff for any minor infractions, fearing that her mother, who was dying, would deride her for her own lack of attention. In another case, an adult daughter wanted to scream at her mom for never asking for what she needed, acting out passive-aggressive patterns and playing the “martyr.” The daughter hated the nagging person she was becoming.

Caregiving can be a long journey, so, as counselors, we must explain the necessity of self-care for the caregiver. Even among caregivers who are fully engaged with their sick loved ones and content with their position, emotional exhaustion takes a toll. Whether dealing with a loved one’s personality changes or the loss of that person’s physical abilities or mental acuity, being on call as the “responsible adult” is draining. Caregiving can run the gamut of emotions and experiences, from boring to terrifying.

Self-care for caregivers includes asking for help, making schedules, sleeping, taking time alone, exercising, seeing friends, checking out support groups, praying, laughing, journaling, connecting through social media and, of course, learning to accept help. By presenting family members, friends, faith organizations or neighbors with specific ways to help, the caregiver is actually providing a service. Rather than viewing these “asks” as a burden to others, it can be reframed as an opportunity for others to do a good deed for the person who is dying.

A caregiver’s functions will depend on many variables. For instance, if the person who is dying is in a facility, the caregiver may be tasked with doing laundry, attending functions at the facility, visiting the sick loved one daily or weekly, finding coverage for meetings with facility staff to discuss behavior changes or concerns, driving the loved one to outside medical appointments, scheduling visits from friends and relatives, and maintaining a family home.

For at-home caregivers, responsibilities might include adjusting for safety precautions around the home. This might involve installing grab bars, removing throw rugs and acquiring nonslip mats, having a working fire extinguisher, checking that the water heater thermostat is set below 120 degrees Fahrenheit and preparing for durable medical equipment (such as commodes, hospital beds and oxygen tanks/cylinders). In addition, these caregivers typically shoulder the responsibility for being available to drive the person to appointments as necessary, finding coverage when away from the home and providing meals that are dietarily different.

Counselors should remind clients who have caregiver responsibilities that friends or relatives might be able to visit or engage in crafts or music with a sick loved one, thus allowing the caregiver some time off. To ward off burnout, caregivers need respite.

Thus we arrive at the conundrum of respite: “If I go away for a few days, what if my loved one dies? How will I live with the guilt?”

There are two scenarios at the end of life: One, the loved one dies when someone is with them and, two, he or she dies when no one is there. Caregivers often worry that their loved one might be alone when they die. Some hospices can provide 11th-hour care, during which volunteers can sit at bedside if the family wishes.

My experience in hospice has been that some patients follow a definitive trajectory in their decline, whereas others follow an indeterminate timeline, making a family’s desire to be bedside at the last breath fraught with uncertainty. Although many cultures encourage “vigiling” at the deathbed, there is an unknown: Does the patient want the family there? Some individuals need to be alone when they die and will release from this life only when the family or a specific person leaves. The speculation about why this happens is endless, but it may help alleviate family guilt to use the metaphor of a group coming to a bridge together, but because only the dying individual may cross that bridge, he or she will do it alone.

Family dynamics

As counselors, we should encourage caregivers to see that a document such as Five Wishes (fivewishes.org) is completed while the elder is mentally competent. This document serves as a directive about how the patient wishes to be cared for at the end of life. It is a binding document like a living will. In considering end-of-life protocols, all adults should be encouraged to write down their wishes so that these are known in advance.

During a crisis or major upset in a family system, different personality traits come to the fore. Family members who aren’t the primary caregiver might assume many roles at the end of life: the Swooper, the Know-It-All, the Call-Me-If-You-Need-Me sibling, the I-Don’t-Know-Anything-About-Dying-Elders family member … All the family roles are intensified. Folks who have a personal need to make amends come crashing in. The Golden Child comes back for a weekend and questions everything that’s been done.

Renaud-Cogswell shared her experience in Take My Hand: “Mom was diagnosed with lymphoma a week and a half ago. The hospice team began coming to care for her at our house shortly thereafter. Brother wants to take mom to lunch. Incredulous, I tell him she is sick, she has lymphoma, and that he could bring lunch here. He brings lunch. He doesn’t, however, bring lunch for me. Not something I should be overly surprised by, but I am hurt nonetheless. Then brother asks Mom if she would like to move into his empty townhouse. (Alone.) Then he and his girlfriend begin telling her all the positives about moving in there. I say, ‘She’s sick. She needs 24-hour care.’ Brother says, ‘Since I kicked my renters out, I need the money.’

“Loudly enough for them to hear, but soft enough so that Mom doesn’t, I hiss, ‘She’s dying!’ Then what do you suppose this brother asks our mother? ‘Can I borrow $500?’ (Who asks their dying mother for money???) And do you know what? She gives it to him! This was yesterday. I ran from the minute my feet hit the floor in the morning till my head hit the pillow at midnight last night. I need to sit down and have a good cry, but today, I’m afraid, will be just as busy.”

There are additional complications that must be addressed when “helpers” come. For caregivers, it is a frustrating and delicate struggle between wanting support and allowing helpers to make mistakes while visiting. The strain of feeling that no one else can do the caregiving correctly is immense. Caregivers should establish safety rules that are nonnegotiable — for example, the parent cannot go out without oxygen, medications must be administered on time, hospice will be called if the elder falls.

Grief counselor David Maes created a template (see below) that can be used when conflict arises between family members. The template helps ensure that during a family meeting, the identified patient remains the center of attention. Family members respond to prompts written in the appropriate boxes. Other concerns are written outside the square in list format.

Start by asking the existential questions (the upper left-hand box): What is meaningful for the patient? Before the illness, what was the person’s worldview? How did he or she move through life? What was the essence of who they were? Next, move to the upper right-hand box, which deals with patient preferences. Ask what the person likes related to music, food, art, reading, nature, hobbies, etc.

The lower left-hand box deals with the illness: How is the diagnosis and prognosis affecting the loved one’s personality, behavior, likes and worldview? What gets in the way of who they are? Finally, list the resources: How is the family going to work together? What’s the plan of care? Who is responsible for what?

Counselors might need to remind family members that past relationship dynamics should have little bearing on the here-and-now focus of the discussion. The question to ask is, “Whose death is this anyway?”

Another protocol, from Susan Silk and Barry Goldman, is called Ring Theory (see tinyurl.com/RingTheory). In this exercise, the center circle is the patient, the subsequent circle is the primary caregiver and concentric circles can identify others who are less involved with daily care. The idea is that only comfort can go inward while the difficult emotions go outward. Family members and friends can offer unconditional love to each inner circle while finding their own support and a place to vent in extending circles. Each family member may find their own rings of support.

If end-of-life care is an area you are considering as a professional counselor, begin by learning about grief and bereavement. Alan Wolfelt’s comprehensive books are available through the Center for Loss & Life Transition (centerforloss.com). The Hospice Foundation of America also offers excellent webinars and books (hospicefoundation.org). There may be local support groups for caregivers in your area, and we should also be able to direct clients to resources such as the Alzheimer’s Association (alz.org) and AARP (aarp.org).

Competency in serving caregivers and families at the end of life involves a combination of approaches. We should be able to provide psychoeducation on dying and the needs of the dying. We should be competent listeners, validating and normalizing their experiences while encouraging life review and memory making. We can offer facilitation for family discussions. We can help our clients with boundaries, rituals and support groups. Finally, we can encourage the caregiver to engage in self-care, including therapy.

****

Tia Amdurer is a licensed professional counselor and national certified counselor with a private practice, Heartfelt Healing Counseling, in Lakewood, Colorado, that specializes in grief, loss, life transitions and trauma. She is the author of Take My Hand: The Caregiver’s Journey, which was published last year (TakeMyHandJourney.com). Contact her at tiaamdurer@gmail.com.

Letters to the editor: ct@counseling.org

****

Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Walking with clients through their final days

By Laurie Meyers October 31, 2016

During the time that Kerin Groves spent by her dying client’s hospital bed, she could tell that he felt conflicted. “I sensed he kept hanging on because his adult children were unable to cope with him dying,” she recalls. “The son kept urging him to fight and get better, even though the patient was in his 90s and ready to go.”

When the man’s children left his room for the day, he visibly relaxed. Groves, a licensed professional counselor (LPC), gently pointed out the difference in his tension level.

“[I] let him know it was OK to go whenever he was ready, and I assured him that I would be there to help his son get through it,” Groves says. “He looked right at me, held my gaze for a time and then closed his eyes for the last time. Given permission and support, he was able to go in peace.”

Groves, an American Counseling Association member who has worked with older adults in retirement communities, assisted living, nursing homes and home care settings, is among a select number of counselors who routinely help individuals and their families cope with the process of dying.

Acceptance and denial

Receiving a terminal diagnosis, or having a loved one receive it, is almost too much to comprehend initially, says Mary Jones, an LPC who spent 20 years counseling patients and their families in an oncology center. “People go into shock, and there is an inability to wrap their minds around what they are hearing,” she says.

Loved ones who are in the room when the terminal diagnosis is given often go through a secondary trauma — shock at what they are hearing and concern for their loved one’s feelings, Jones says. In fact, she adds, these loved ones may initially experience more anxiety than the person receiving the diagnosis.

Jones counseled patients with varying prognoses, including those who would go on to live long lives after treatment, but in her role, she often saw people at the very end, when they had been told they had only months or weeks to live. “Once they know that treatment isn’t working and there are no more options, it seems like people hit a fork in the road emotionally,” she says.

One path certain patients chose was accepting their impending deaths but also determining to answer a weighty question: What do I do next? In her role as a counselor, Jones would talk to these clients about their legacies — what they wanted to say to or leave behind for their loved ones.

One of her clients was a father with a young son. He made a video that talked about the things he wanted his son to know but wouldn’t be there in person to tell him. The video included subjects such as what the son should know about middle school, about girls and about sex.

The other fork in the path that Jones commonly witnessed was complete denial of the terminal diagnosis. She heard patients make statements such as “This isn’t happening” or “I’m not going to die.”

As a counselor, her role was to try to guide these patients toward acceptance. She acknowledges that the task was difficult. “It so goes against our belief and training and experience [as counselors] to have to say to someone, ‘But your end is near,’” she says.

Jones would sit with these patients and encourage them to talk about their feelings regardless of what they were: fear, anger, sadness, disbelief, etc. After validating what they were feeling, she would circle back around to acceptance and the importance of deciding what they wanted to do or say before they died.

Groves, currently a private practitioner in Denton, Texas, often used existential and person-centered therapy when working with individuals in denial about their impending death. “Person-centered therapy gives the patient the lead in directing the conversation in the way they feel it needs to go, at their own pace,” she says. “We talk about denial openly and how it helps or serves a purpose, as well as how it might work against them. Helping a client make a cost-benefit analysis regarding denial is empowering and respectful of [his or her] needs.”

Of course, it isn’t uncommon for family members to be dealing with denial too. Jones, who would also provide family therapy in her role, says this can create tension between family members and the person who is dying, just when that person needs more support than ever.

Seeking support

Emotional support from family members is important, but the principal source of support for many clients is their husband, wife or partner. If discord is already present in the couple’s relationship, these problems will only be exacerbated by the stress of serious or terminal illness, says ACA member Nicole Stargell, who has used emotionally focused therapy (EFT) with couples facing breast cancer diagnoses. EFT operates on the premise that to feel “attached” (safe and secure) in a relationship, couples must be able to manage and share their emotions, she explains.

When certain people experience conflict or distress, they withdraw — sometimes physically — and don’t want to talk about the problem or issue, Stargell says. Other people are “pursuers,” she continues, and their desire is to talk about what is wrong. Pursuers will actively seek responses from their partners.

Anytime that either partner displays withdrawing or pursuing behaviors, implicit assumptions are being made, says Stargell, an assistant professor of counseling and the field placement and testing coordinator at the University of North Carolina at Pembroke. For instance, partners who withdraw often do so because they perceive themselves not to be strong enough to cope or view themselves as being deficient in some other way. When pursuers try to talk to withdrawers about what is wrong, this just reinforces the withdrawers’ feelings of deficiency, Stargell explains. Meanwhile, pursuers are thinking that withdrawers don’t regard them as being important enough to try to talk things through with them. As a result, both partners end up feeling alone and unsupported, which isn’t good for either individual’s mental or physical health, she says.

Using EFT, Stargell would identify the cycle of misunderstanding that plays out repeatedly between the couple but make it clear that neither partner is to blame. Next she would help the couple start to reframe their interactions by asking them to talk about a conflict and actually say out loud what they were thinking in response to their partner’s behavior.

Stargell would then help the couple see that their reactions had more to do with self-blame than with the other person’s actions. In other words, there was no implicit message attached. She would also have the couple role-play, taking turns presenting a problem and practicing reacting differently to what the other person said or did.

Stargell also works with couples to identify triggers or recurring situations that tend to set off the negative cycles. For instance, in the week following chemotherapy, the partner who is a withdrawer and is undergoing treatment might retreat emotionally, in part because he or she is sick and feels like a failure for not being able to perform his or her normal role, such as being the one who washes the dishes. Because the withdrawing partner is sick, the pursuer doesn’t want to push for interaction. However, Stargell says, it’s not uncommon for the pursuer to feel some anger or resentment about the things the partner with cancer — or the couple together — can no longer do. The withdrawer can typically sense the underlying tension, which makes him or her withdraw even more. Together, Stargell and the couple would talk about what the couple could do differently the next time the withdrawing partner has chemotherapy.

Approaching the end

There are many ways that counselors can support and assist clients who know that they are dying. “I have helped clients find meaning in their personal [histories] and accept suffering during the dying process by engaging in life review and reminiscence, with both laughter and tears, allowing them to say what they haven’t been allowed to, reconciling unfinished business from the past [and] helping them connect with and share their true feelings with their loved ones,” Groves says. But sometimes, the most significant role is “just sitting with them in silence as a companion,” she adds.

Groves has also helped clients facing death to work through their fears and concerns. These have included issues such as feeling guilt about being ready to die when family members beg them to keep fighting; fear of more pain or agony; weariness from long medical treatments; spiritual doubts or fears; and anger over family conflicts erupting or being exacerbated during the medical crisis.

Jones would sometimes take on a sort of facilitator role with these patients, making sure they received what they wanted or needed in their final weeks or days of life. But counselors can also advocate for patients in other ways, Jones says. Especially toward the end, patients with terminal illnesses can experience a significant amount of pain but may not want to take yet another medication. She recommends that counselors working with this population educate themselves about alternative methods of pain relief and relaxation techniques.

As the end approaches, some individuals find it easier to accept that they are going to die, whereas loved ones often have the opposite reaction, Groves notes. “Curiously, people who are near death may be more calm … because they have accepted their prognosis, while their loved ones struggle with denial and avoidance because they are not ready to let them go,” she says. “When a person dies, the opportunity to make peace with them is over, so at least when the person is still hanging on, the belief or hope that it can be reconciled is still there. They may fear letting that person die with unfinished business still between them but struggle to vocalize those unsaid things because they don’t feel it’s appropriate or acceptable.”

Groves says counselors can also play an important role in preparing family members for what to expect in the dying process. “If hospice is involved, their nursing staff may make an extra effort to help counselors explain to the family what is happening biologically, the signs of impending death and other medical information,” she says. “A counselor can also be of help with active listening, reflecting feelings, normalizing emotional responses, addressing spiritual and existential concerns, and [exuding] warmth. Many people do not know what to do or say, so they do or say nothing at all, leaving the family members stranded in their grief. Counselors are equipped to sit with people in pain and be present with them.”

Groves also believes that being present when a loved one dies can be very healing for family members. “It’s very hard to witness a death and, frankly, most people fear and avoid that experience,” she says. “They are typically afraid they will be overwhelmed with their feelings and be unable to cope. But if one is willing and able to tolerate the discomfort, with the support of the counselor, being with a dying person in their final moments allows one to genuinely embrace the natural process of death and confront its reality, which is important for healthy grieving.”

****

Related reading: See Counseling Today‘s November cover story, “Grief: Going beyond death and stages”

****

Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org

****

Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.