End-of-Life Counseling
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Counseling clients at the end of life can be challenging but rewarding work. Not only do counselors support their clients through end-of-life decisions and fears, but they may also assist their families through their grief journeys. Counselors help with their expertise, whether for the person facing death, their family, surrogate decision maker, or caregiver. The issues clients present at the end of life can include depression, anxiety, post-traumatic stress, anticipatory grief, management of pain, and dignity concerns.
Counselors must practice flexibility to be fully present to clients at the end of life. Counselors can make themselves more available through on-call services. When people are seriously ill or close to death, they may not have the stamina to attend a full-length therapy session. For this reason, client sessions could be shortened. There can be an unpredictability to treatment length. Some clients may require months of therapy, while others could be days or weeks. Including family members and medical professionals as needed for your client’s care is important.
End-of-life counseling not only takes place when a person is dying but also can begin before an illness and after a diagnosis. Counseling can be offered to the surviving loved ones after the death of a client.
Competent Care
To counsel clients at the end of life, the counselor must maintain training and education in end-of-life therapy. If the counselor does not have competency in end-of-life issues, it is prudent to consider a client transfer to another therapist.
Counselors do not perform end-of-life counseling alone. Clients with end-of-life issues require multiple methods of treatment: medical doctors, hospital programs, hospice services, group and individual therapy, and/or psychiatry. Discuss with your client the possibility of having additional support for therapy. Obtain a release of information between yourself and the other providers to effectively coordinate care.
It is not unusual for counselors to have countertransference reactions, as those who work with the dying are forced to face their own fears of death. For this reason, it is essential for counselors who work with clients at the end of life to practice self-care, set proper boundaries, and participate in regular supervision sessions. Counselors may want to consider receiving their own counseling throughout different parts of their careers.
Advanced Care Planning
The most effective counselors are those who have made their own advance care planning or who have talked with a professional about it. Advance care planning documents include a will and a power of attorney. Medical care documents such as DNR or do not resuscitate, healthcare proxy, and other directives relevant to the client’s wishes concerning care could also be included.
The counselor’s role is to provide support and psychoeducation to their clients and families. Counselors help clients explore their wishes and communicate clearly what they want before speaking with a legal professional.
Holding Compassionate Space
Sometimes, a counselor’s presence is more important than offering guidance or suggestions. Holding the space means sitting in silence and creating moments of quiet for your client. It may feel as if you are not doing enough to help your client, but holding the space is a powerful source of healing.
The intention of this space is to give your client room to fully express all of their feelings in an accepting environment. Your client may express fear, anger, regret, or disappointment as they think back on their life experience. The compassionate counselor acknowledges these feelings as a normal part of life and dying. This safe container of space also holds positive and joyful memories, giving the client time to process and integrate these life experiences into meaning-making.
Clients prefer expressions of compassion and empathy over sympathy. Practicing these skills will benefit your work with end-of-life clients. In a research study by Sinclair et al., 2017, it was discovered;
Constructs of sympathy, empathy, and compassion contain distinct themes and sub-themes. Sympathy was described as an unwanted, pity-based response to a distressing situation, characterized by a lack of understanding and self-preservation of the observer. Empathy was experienced as an affective response that acknowledges and attempts to understand an individual’s suffering through emotional resonance. Compassion enhanced the key facets of empathy while adding distinct features of being motivated by love, the altruistic role of the responder, action, and small, supererogatory acts of kindness. Patients reported that unlike sympathy, empathy and compassion were beneficial, with compassion being the most preferred and impactful.
Exploring a Good Death
In end-of-life discussions, counselors explore what makes a good death for their clients. Each client’s desires for a level of comfort, medical treatments, where they wish to die, and who they want to speak with prior to their death will vary. The end-of-life counselor can help assist with many of these wishes and tasks.
It is difficult to talk about death and dying. When a person expresses their wishes regarding a good death and what they desire, it eases the stress and worry of their loved ones. Often, these types of discussions do not happen due to an avoidance of death and death talk. When one is not clear about their wishes, this can leave their loved ones guessing what a person wanted for their health care or after-death care.
In a study with older homeless adults residing in transitional housing, a good death versus a bad death was explored. The researchers, Ko et al., 2015, found;
Using a grounded theory approach, the themes for a good death were (a) dying peacefully; (b) not suffering; (c) experiencing spiritual connection; and (d) making amends with significant others. Themes for a bad death were (a) experiencing death by accident or violence; (b) prolonging life with life supports; (c) becoming dependent while entering a dying trajectory; and (d) dying alone.
Anticipatory Anxiety & Grief
The fear of death and dying can create anxiety due to the unknown nature of these events. It is not uncommon for some end-of-life clients to experience anticipatory grief. Anticipatory grief is a normal grief process occurring before the actual death.
When anticipatory grief is an expression of past or current trauma, it may develop into complicated grief if not treated. In these instances, a thorough assessment is warranted to determine if the grief is current or it is connected to an unresolved trauma. Consider treating the initial trauma before the anticipatory grief. At the end of life, if time does not allow for intensive treatment, look to reduce individual trauma symptoms or grief.
Cognitive Behavioral Therapy
Traditional cognitive therapy work focuses on changing distressing thoughts. Those at the end of life often have valid distressing thoughts and these do not need to be modified, managed, or changed. It is empowering for clients to acknowledge there are parts of themselves that remain unchanged, no matter what happens to their physical body.
At this stage of life, therapy is not done to change the experience of death but rather to work on all-or-nothing type of thinking. This is useful for clients who express regret or resolve unfinished business.
Dignity Therapy
Dignity therapy is an intervention developed for clients at the end of life. The sessions are focused on what is most important to the client’s life story through the Dignity Therapy Interview. These aspects are recorded, with the client’s permission, to be remembered by others.
After the session or sessions, the recorded interviews are transcribed and given to the client to review. If necessary, the document will be amended and presented to the client for approval. It is the client’s choice to whom to leave these written memories.
In a study conducted by Montross, Winters and Irwin it was found, “The most commonly discussed topics among patients were (in rank order): autobiographical information, love, lessons learned in life, defining roles in vocations or hobbies, accomplishments, character traits, unfinished business, hopes and dreams, catalysts, overcoming challenges, and guidance for others.”
Reviewing one’s life often elicits positive memories, which connect the client to a sense of meaning and purpose. This activity gives your client a sense of self-control in a time of life when their body is out of control. It is therapeutic for clients to reflect on their character and how they want to be remembered. Knowing the client can choose to leave these memories to another loved one reassures them that their memory lives on. This brings healing and resolution for end-of-life clients.
Although there are many benefits to dignity therapy, it is not for all end-of-life clients. A psychological evaluation will need to be conducted to assess if a client is appropriate for this type of therapy. Clients who are too ill or who have cognitive issues would not benefit from this type of therapy.
Chochinov et al., report, “Despite the beneficial effects elicited by Dignity Therapy, its ability to mitigate outright distress, such as depression, desire for death or suicidality, remains unproven. Future research amongst more severely distressed patients may indeed establish its role in those particular circumstances.”
Lisa Hutchison, LMHC
Writer & Contributing ExpertLisa Hutchison, LMHC, is a licensed mental health counselor for the Commonwealth of Massachusetts. She works for professionals who want to treat and prevent compassion fatigue. With over 20 years of psychotherapy experience, she helps her clients assert themselves, set boundaries, and increase their coping skills. Her specialty is decreasing stress, anxiety, and depression while increasing realistic methods of self-care for those who help others. Ms. Hutchison’s psychological advice has been featured in Reader’s Digest and the Huffington Post. Her articles have been published in numerous magazines, including Grief Digest and Today’s Caregiver.
Lisa is the bestselling author of I Fill My Cup: A Journal for Compassionate Helpers and a faculty member writer for NetCE. Her latest continuing education unit publication is “Setting Ethical Limits for Caring and Competent Professionals.” She has taught creative writing in colleges and presented on boundaries for the compassionate helper; the use of expressive art to heal grief, anxiety, and depression; inspirational and motivational topics; and creative writing techniques.