Counseling for Loved Ones with Terminal Illnesses

Coping with illness — and the grief, frustration, anger and other emotions that accompany it — is one of the reasons people seek mental health counseling. Professionals undergo years of education to learn methods for counseling individuals with an illness. These strategies become more specialized and necessary when a diagnosis is terminal. Not only do these clients need help addressing their courses of treatment, they also need help confronting mortality, expressing their fears and preparing as best they can.

When certain aggressive forms of cancer or Alzheimer’s disease strikes, the client is the person who most directly is affected by the disease. However, the emotional and mental health needs created by a terminal illness do not end with the client; these needs extend to family, friends and other loved ones. Dealing with prolonged grief in these situations is a complicated process, one of wrestling with difficult, seemingly unacceptable realities and making peace with them. Death, and the specter of it, can conjure complex emotions — as the terminal illness is learned, as the client goes through it, even after they have passed and loved ones learn how to adjust to the loss.

End-of-life counseling for family members with a sick loved one entails taking a comprehensive, if delicate, perspective. This may mean working with a team of professionals to ensure the individual’s wishes are met. However, loved ones will progress through their own coping process, sometimes in different ways, at different rates and to different degrees, but providing a unifying presence can help instill in the client and his or her family and friends the tools and guidance to process emotional needs due to death. Following are some strategies for delivering quality mental health counseling to the loved ones of a client living with a terminal illness.

Encourage information gathering on the illness

A terminal illness is defined by the American Cancer Society (ACS) as an “irreversible illness that in the near future will result in death or a state of permanent unconsciousness from which the person is unlikely to recover.” A terminal prognosis may also be made from a chronic condition. Interpretation, in the legal sense, can vary by state, but organ failures, advanced cancers, heart disease and brain damage often qualify. At the same time, however, counselors can encourage family members, and clients if they can, to learn more about the disease or condition. This suggestion isn’t meant to create unrealistic expectations of recovery: Knowing how the disease will progress and at what time the issue of hospice might need to be raised is important for both client and family

Gaining an understanding of the illness also will offer patients and their families a stark representat.ion of what to expect. Deterioration and loss of abilities that were once second-nature (remembering faces, remembering names, holding a spoon) can lead to extreme reactions. Declines in ability and functionality cannot be avoided in many cases, but can be mitigated somewhat by knowing exactly what the disease or condition leads to and planning for those changes. Counselors help clients and family members visualize and prepare for these futures. (It is not a “duty”

Address the practical steps

As unpleasant as death is, certain steps and actions are required in trying times that require levelheaded thinking and initiative. Though the ACS notes that some states define terminal illnesses as those from which an individual will die regardless of treatment, many individuals do pursue some measure of treatment, many times, symptom relief. Researching the costs of such options and expectations is central to planning for the mid-term. (what, exam?) Yet, the eventuality of a terminal illness can weigh on clients and their loved ones, who may be mired in disbelief or simply not able to imagine completing the steps necessary for an end of life as desired by the person with the illness. Counselors can help people cope with their feelings and reactions to a terminal prognosis so that the patient is afforded the best end-of life care.

If an older adult learns he or she has dementia, a condition that worsens over time, arranging legal affairs like powers of attorney, living wills and estate planning before his or her cognitive abilities deteriorate is important to everyone in the family. Avoidance of such responsibilities is understandable, and counselors want to project empathy in these cases. Gathering a family to discuss these matters may provoke engagement with the realities at hand and help them work through processes together.

Respect the individual

Having family sessions is a benefit at certain junctures along the stages of coping with a terminal illness, but what needs to be remembered throughout the counseling is that the client is an individual with the rights to make decisions about their own end of life. Counselors sometimes have to act as mediators in these scenarios. For instance, if someone diagnosed with cancer wants to travel while he or she can, but a relative is upset this would supersede time with family, that relative could then blame the client for being selfish. Tensions could flare further near the end of life, but mental health professionals need to counsel clients and their family alike about how they communicate and express themselves in ways that don’t exacerbate matters but make good use of the time left.

Getting family to understand that they cannot control the individual will help them later accept the ultimate realization that they cannot influence death. Ceding control is not easy, but discussion can help make progress toward it. Psychologist Ellen Pulleyblank Coffman wrote for Psychotherapy.net about her husband, who after living on a ventilator for seven years, had the machine turned off. She recounted the “conversations with family members, ethicists, psychotherapists and spiritual teachers” over the months it took to make a decision and had advice for structuring these conversations with family: “Inviting families to include conversations about death and dying can be helpful, but often [they] resist this fiercely as they hold onto life. Sometimes these conversations work better not all together but separately, with different family members at first and then leading to a wider discussion.”

Offer productive activities

Living with a terminal illness means the client is alive and able to share memories with family and friends. Reminiscence therapy is a powerful tool in helping provide families and clients something to balance out knowing only the unknowable lies ahead. However, they may have trouble finding appropriate mediums of expression. Counselors can recommend a few options that can be enjoyed and be productive in helping individuals cope with terminal illness, including the following activities:

• Videos to remember loved ones by. Clients can create specific testimonials and recount to particular family or friends certain experiences, and even record a greeting to a child not born yet. Audio recordings can produce a finished product just as useful and treasured.
• Scrapbooks with letters and photos. Holding writing sessions and having participants read aloud their letters before pasting them in a scrapbook can be a cathartic exercise that helps the individual process final emotions. Adding old or new photos provide an added activity and a token that will last past death.
• Music therapy (and other activity-based therapies). Counselors should recommend quality palliative care for terminal clients that is not intrusive. Music therapy has been shown to positively affect “pain, physical comfort, fatigue and energy, anxiety and relaxation, time and duration of treatment, mood, spirituality and quality of life,” according to Evidence-Based Complementary and Alternative Medicine, which reviewed studies of music therapy.

Connecting clients and family with resources

Death is an intensely personal experience, but one that also is shared by many individuals. Counselors can put clients and their families in contact with support systems — or other groups of people who have gone or are going through similar processes of grief and coping — that can provide a release and a source of empathy.

Cancers that develop in children are arduous circumstances to live through, and many online forums and social groups exist to offer resources and safe spaces to help parents come to terms with the death of their children. Likewise, support systems exist for clients. These groups can connect them with others living through similar illnesses, helping clients better understand their disease or process emotion. Attending such meetings has the added benefit of encouraging socialization.

Bradley University can help mental health counselors

Everyone reacts to death and dying in their own ways. When counseling the family of a terminally ill client, this notion becomes apparent. Counselors need to have the skills and knowledge base to address and serve these mental health needs. Counselors looking to improve their understanding of human emotions and coping strategies should consider Bradley University’s online Master of Arts in Counseling program.

Recommended Reading

Helping a Client Receiving End-of-life Care

A Terminal Diagnosis: Strategies for Helping Patients and Their Loved Ones

Bradley University Online Master's in Counseling

Sources

https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/advance-directives/faqs.html

https://www.psychotherapy.net/article/family-therapy-catastrophic-illness

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1142188/