Terminal Illness

Faded, wilting red rose in water glass against background of blurred light

A terminal illness is a disease that cannot be cured or treated (for an improved prognosis) and is thus likely to cause death within no more than a few years. A person diagnosed with a terminal illness is often likely to experience a wide range of emotions, such as grief, regret, or sadness, among others.

Family members, romantic partners, and friends are also often affected by an individual's diagnosis, and it may be beneficial for both the individual with the illness and the members of their support system to seek the help of a professional counselor to discuss their feelings and otherwise come to terms with the diagnosis. 

Understanding Terminal Illness

Terminal illness is a broad term that can include many different medical diagnoses. Some diseases, such as amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease, are known to be terminal from the time of diagnosis, while others may not necessarily be terminal at first onset. Cancer, for example, can be treated in many cases but may be terminal in others, though many forms of cancer are highly treatable, and people can experience complete remission. Late-stage cancer may progress quickly, however, and the period of time between diagnosis and death may be relatively short (from a few weeks to a few months). Some illnesses for which there is no cure, such as HIV/AIDS, have a long period of progression, and in many cases, those who receive early treatment may not see a significant decrease in quality of life or life expectancy. 

It is often recommended that those diagnosed with a terminal illness join a support group and/or see a counselor who can help them understand and come to terms with their diagnosis. In counseling or support groups, people may be able to express the complex emotions and feelings that are often likely to accompany a terminal diagnosis.

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Coping with a Terminal Illness Diagnosis

Coming to terms with death is likely to be a difficult experience, and individuals who have a terminal illness may experience conflicting and varied emotions. Upon first receiving their diagnosis, an individual may feel numb, possibly calm, or even accept the news in a matter-of-fact way, as if they have not yet fully absorbed the reality of the situation. Many people might experience uncertainty, as they do not know exactly how much longer they will live or how their body will change as the disease progresses. Sadness, fear, anger, frustration, regret, and uncertainty may eventually be followed by feelings of acceptance and relief. 

People who are knowingly at the end of life typically face a number of decisions: What type of care do they need? Where should they seek care? How should they manage their finances? What type of funerary services do they want? One of the most important decisions individuals who have a terminal illness are likely to face is how to spend their remaining time. Individuals who seek to fill the rest of their lives with meaning and joy in their lives may pursue activities that provide those things. Others want to ensure that they find a sense of closure before passing on, and may seek forgiveness from people they have wronged, work to complete important tasks, and say goodbye to their loved ones. 

When children face a terminal diagnosis, they may not completely understand what is happening to them. For the most part, doctors and other providers encourage families to help their children understand rather than keep their diagnosis from them. Many people can often sense that the body is failing, and children are just as likely to feel physical changes and also notice the reactions and emotions in the adults around them. Talking to children about death can be difficult, even more so when the child is very young, but children who have knowledge of what is coming and can begin to prepare may be more likely to have peaceful and fulfilled final days. 

Effects of Diagnosis on Family and Friends

Terminal illness affects not only the individual who is diagnosed, but also their friends and family members. Loved ones face the process of saying goodbye to the person who is dying, and many may find it difficult to deal with their feelings of grief and loss. Those who care for people with terminal illness are at increased risk for anxiety and depression, and they may also experience feelings of guilt if they take time off from caretaking, even though not devoting adequate time to self-care may lead to resentment, stress, and caregiver burnoutOne of the most important decisions individuals who have a terminal illness are likely to face is how to spend their remaining time.

Children who are losing a parent may experience fear and uncertainty about the future. The surviving parent, in some cases, may also experience anxiety related to finances and the future. Siblings of a child who is dying may feel neglected and experience resentment when their parents spend much of their time caring for the sick child. They may also fear that they, too, could become ill and die. 

Other challenges that loved ones may face include feelings of isolation, insomnia or other sleep issues, and general irritability

Death with Dignity

One option for end-of-life care is referred to as death with dignity. Death with dignity describes the process in which a terminally ill adult, who is of sound mind and has met certain medical requirements, is given a prescription medication they can take to end their life and die where and when they want to, rather than remain in severe pain and/or unable to function or after quality of life has severely diminished. Many individuals who select this option do so because they want to feel a greater sense of control at the end of their lives and do not want to experience great pain or diminished capabilities. 

Death with dignity, also referred to as medically assisted suicide, is legal in some parts of the world, such as Switzerland, the Netherlands, Belgium, Quebec, and Colombia. In the United States, it is legal for medical providers to prescribe medication that will be used for this purpose in the states of Washington, Oregon, California, Vermont, and Montana. In some states, a court order is necessary. 

Counseling and Care

Palliative care is usually provided to people with terminal illnesses. This type of care, which might include medications, treatments to minimize pain, and spiritual and/or psychological treatment, aims to keep individuals comfortable and provide them with the best possible quality of life. Doctors, nurses, and other practitioners who specialize in dealing with terminal illness and its effects might offer palliative care in a hospital, hospice, or even home setting. 

Therapy provided to a person with a terminal illness typically differs from other types of therapy. It may be more time-limited and focused, and the goals of therapy may be more modest, especially if the individual is restricted by their medical condition. Therapy may be a collaborative approach that involves medical providers, spiritual advisers, and family members.

End-of-life counseling may use a variety of therapeutic approaches, but it frequently involves the work of Elizabeth Kubler-Ross, who identified the stages of grief a person is likely to progress through at the end of life.

  • In the initial stage, denial, people may find it hard to believe the illness is terminal or that it really is happening to them. 
  • In the next stage, anger, people may express feelings of anger and resentment, or a belief that the situation is unfair.
  • Bargaining, the next stage, may involve attempted deals, generally with the higher power the individual believes in, to prolong life.
  • The fourth stage, depression, involves feelings of sadness, loss, hopelessness, and grief.
  • Acceptance, the final stage, involves coming to terms with impending death and feeling ready for it, though not necessarily happy about it.  

Regardless of the specific modality that is used, end-of-life counseling can offer a supportive therapeutic relationship to the person who is ill, as well as a safe place to work on concerns related to death and dying. Some goals of this type of therapy include processing significant emotions, learning how to communicate wishes and needs to important friends and family members, facilitating open and honest conversations about illness and its effects, and building a support network to become more ready to face death.

Counselors may recommend individuals attend support groups for those who are terminally ill. Some people may find these groups a supportive environment where they can share concerns and seek companionship from others who are going through the same situation. 

Case Example

  • End-of-life counseling with parents to accommodate conflicting views. Joan, 30, was diagnosed with ovarian cancer in her late twenties. After chemotherapy and surgery, it seemed that the cancer had gone into complete remission, but at a recent checkup, her doctor discovered it was not only back, but terminal. On her doctor's recommendation, Joan finds a counselor and begins treatment to make her remaining months more comfortable. She confides in her counselor, and to the members of the support group she joins, that she has "felt this coming" and is not surprised by her diagnosis. She still finds it challenging and painful to accept that her life is nearly at an end, but spending her days with her friends and doing simple things she enjoys is helping her feel comforted. However, her parents not only do not want to accept that her cancer is terminal, but they are also constantly urging her to join their church and be baptized so "her sins can be washed away," They tell her if she becomes a Christian, God might save her, but if not, she will at least go to Heaven when she dies. Joan does not believe in God or Heaven, but she tells her counselor and support group that she wonders if she should go along with her parents' wishes so that they feel better about her death. In the end, she decides she doesn't feel right about pretending to convert, and she instead decides to invite her parents to her counseling session so she can express her love and respect for them but make her own beliefs and wishes clear. With the help and support of the counselor, she does so, also explaining how their constant pleas to "save her soul" are distressing. After a tearful, difficult session, her parents apologize and agree to respect her wishes and beliefs and help her last weeks be enjoyable and peaceful. 

References: 

  1. Caring for a terminally ill child: A guide for parents. (2015, November). Retrieved from http://www.cancer.net/navigating-cancer-care/advanced-cancer/caring-terminally-ill-child-guide-parents
  2. Coping with a terminal illness. (n.d.). Retrieved from http://www.nhs.uk/Planners/end-of-life-care/Pages/coping-with-a-terminal-illness.aspx
  3. Culkin, J. (2002). Psychotherapy with the dying person. Retrieved from http://www2.sunysuffolk.edu/pecorip/SCCCWEB/ETEXTS/DeathandDying_TEXT/Culkin.htm
  4. End-of-life issues and care. (n.d.). Retrieved from http://www.apa.org/topics/death/end-of-life.aspx
  5. FAQs. (n.d.). Retrieved from https://www.deathwithdignity.org/faqs
  6. ​Law reform. (2015, October 15). Retrieved from http://www.assistedsuicide.org/suicide_laws.html
  7. Serious, chronic, or terminal illness. (n.d.). Retrieved from https://www.adaa.org/serious-chronic-or-terminal-illnesses
  8. What are palliative and end of life care? (n.d.). Retrieved from https://www.mariecurie.org.uk/help/terminal-illness/diagnosed/palliative-care-end-of-life-care

 

Last updated: 10-10-2016

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