Psychological Issues in Terminal Illness

Preparatory grief is the sense of loss that a person diagnosed with a terminal illness might feel in relation to their own inevitable death. This concept was first introduced by Elisabeth Kubler-Ross in the 1960s in her book “On Death and Dying.” Kubler-Ross defined preparatory grief as “grief the terminally ill patient has to undergo in order to prepare himself for his final separation from this world.” 

While anticipatory grief experienced by family or loved ones shares similar symptoms, preparatory grief is the preferred term to describe grief as experienced by the dying patient. Although these terms are sometimes used interchangeably, both differ from grief, mourning and bereavement that occur following the loss of a loved one.

Signs of preparatory grief may include feelings of anger, anxiety, fear, guilt, or sadness. Fatigue, emotional numbness, or forgetfulness may also be present. Although these symptoms appear similar to depression, they are not the same thing.

Causes of preparatory grief

Researchers identified preparatory grief as “the physical, psychological and cognitive changes that occur in response to an abrupt change in the relationship between the grieving person and the loss of object(s).” They define these “objects”  as tangible representations associated with current losses and projected loss in the future. As a terminally ill person attempts to reorganize, resolve, or adjust their expectations in relation to these losses, they may experience feelings of preparatory grief.

Aside from the anticipated separation from loved ones, some things that may cause symptoms of preparatory grief include the loss, or future loss of:

• Simple pleasures that can no longer be enjoyed
•  Life experiences or events like graduations, anniversaries, birth of a grandchild, etc.
• Former self-image (person struggles to adopt a more fragile view of themself)

However, it is important to remember that someone’s reason, experience, or response to preparatory grief can widely vary and change. A person recently diagnosed with a terminal illness may be in a state of shock where disbelief can make it difficult to process grief. Or, the chaos of re-adapting how they live day to day might easily overshadow their ability to confront emotions associated with grief.

Offering support for someone experiencing preparatory grief

Below are a few suggestions for supporting someone experiencing preparatory grief. They are based upon an acronym: RELIEVER.

• Reflect – This simply means mirroring the person’s emotions. If they express anger about their illness, simply acknowledging you hear their anger can help someone to feel they are not alone.  
• Empathize – Acknowledge what the person may be feeling. Offering feedback such as “I’m so sorry you are going through this” helps a suffering person feel validated and heard. 
• Lead – Use guided questions that can help someone recall and utilize familiar coping mechanisms. For example, asking “When you went through (a particular) difficult situation in the past, how did you handle it or get through it?”
• Improvise – Be alert to personal boundaries and be ready to change direction if it appears your efforts to help are causing the person more distress.
• Educate – You can help someone identify and validate their feelings by explaining that they are not alone and that others experience the same feelings in similar circumstances.
• Validate – Let the person know that their feelings are perfectly normal and expected for someone struggling with very difficult circumstances. 
• Recall – Prompting memories of special stories or life achievements can be comforting to someone facing the end of their life.

For the person who is dying, recalling these memories may offer a chance to do a final “life review” and find a sense of closure before death occurs. Some people find that having the opportunity to say “I love you;” “I forgive you;” and “Please forgive me,” provides a sense of peace and comfort as life comes to an end. Granting them an opportunity to express thoughts and feelings about their relationship with you could be beneficial to both the gying person and people close to them. 

Sources

“Identifying and Managing Preparatory Grief and Depression at the End of Life”. American Family Physician. https://www.aafp.org/pubs/afp/issues/2002/0301/p883.html

It is best to approach your interactions with patience and empathy, understanding that you will likely need to navigate these challenging conversations over time. Denial is often a psychological defense mechanism that emerges to cope with the emotional overwhelm of the end of life. Your loved one may try to maintain the belief that their condition will improve or that they can be cured, even if their healthcare provider presents significant information or data that indicates otherwise. However, it is important to understand that receiving a terminal prognosis is deeply distressing, even if someone has spent years living with a chronic condition that typically has a poor prognosis.

Instead of addressing your loved one’s denial in a confrontational or direct manner, consider how you might gradually introduce the topic in the upcoming days or weeks. There can be many reasons why someone might be in denial that they are dying. Some individuals find it difficult to accept the finality of their diagnoses or may not want to lose hope, especially if they have been pursuing curative treatments for an extended period of time. Understandably, many individuals have a fear of death and may experience denial to manage the anxiety surrounding their mortality. Gradually approaching the topic and allowing your loved one to discuss it on their terms helps to create a safe space for more open dialogue regarding their emotions and thoughts about the situation. In those moments, listening to your loved one and validating their emotions is crucial. Try to avoid providing advice. Remember, you cannot ‘fix’ the situation, but you can support your loved one through the emotions and concerns surrounding the dying process. 

Additionally, you can collaborate with your loved one’s care team for assistance in navigating these conversations. As healthcare professionals, they can provide objective information and answer important questions that your loved one may have regarding their prognosis. Introducing a mental health professional such as a counselor, therapist, or social worker can also be beneficial in helping your loved one navigate their anticipatory grief or anxiety about death and dying. By being considerate and thoughtful in your approach, you can help ensure that your loved one’s remaining time is as peaceful and comfortable as possible. 

Sources

“Anticipatory Grief: Symptoms and How to Cope.” Cleveland Clinic. https://health.clevelandclinic.org/dealing-with-anticipatory-grief 

“Coping with Emotions as You Near the End of Life.” American Cancer Society. https://www.cancer.org/cancer/end-of-life-care/nearing-the-end-of-life/emotions.html 

“Providing Care and Comfort at the End of Life.” National Institute on Aging. https://www.nia.nih.gov/health/end-life/providing-care-and-comfort-end-life#emotional 

Clinical depression is common in people who are living with a terminal illness. According to an article by medical ethicist Robert Fine, M.D., in the journal Baylor University Medical Center Proceedings, between 25% and 77% of terminally ill patients experience clinical depression at some point during the course of their disease. What’s more, the presence of depression often increases their suffering by contributing to anxiety and feelings of hopelessness, helplessness, guilt and despair. People who are depressed may also feel worthless, lack self esteem and have no interest in things they once enjoyed. Depression may also make the physical symptoms of the underlying disease, such as fatigue, sleeplessness, lack of appetite and pain, significantly worse. 

Depression is more likely to occur in seriously ill patients with advanced disease, since the burden of symptoms is likely to be higher and their psychological resources worn thin. Interacting with the outside world also becomes more difficult as physical challenges become more severe as the illness progresses, which can contribute to feelings of loneliness, isolation and despair. A history of depression, prior suicide attempts or substance abuse also make it more likely that a person will become depressed when they are seriously ill. A family history of depression (sometimes multigenerational) is often a contributing factor as well. 

Certainly, medication cannot “fix” a terminal illness, and moving through the grieving process is an important part of coming to terms with death. However, if a terminally ill person is clinically depressed, appropriate medication combined with psychological counseling may help ease their suffering and allow them to experience more joy during the time they have left. 

If you or a loved one is terminally ill and showing signs of depression, don’t assume that this is a response to the underlying disease. Speak with your healthcare provider about your concerns. They may want to add a psychotropic medication and/or involve a mental health professional in your care. 

Sources

 “Depression, anxiety, and delirium in the terminally ill patient”. National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291326/

“What Are the Causes and Symptoms of Depression?” WebMD. http://www.webmd.com/depression/guide/depression-symptoms-causes#1 

“Mental Health Medications”. National Institute of Mental Health. https://www.nimh.nih.gov/health/topics/mental-health-medications/index.shtml

According to the American Cancer Society, people who are dying or who know their death is approaching experience a number of emotions. Some of these include:

• Fear: Many people say that they are afraid of dying, but what they often mean is that they fear certain things will happen as they die. For example, some people are terrified of dying alone; others fear physical pain and discomfort; while still others fear being dependent on others for their needs. Try to examine the fear, either for yourself or with your loved one, and pinpoint its cause. Then try to find ways to alleviate it through practical action. (For example, make a plan to have someone with the dying person at all times, or involve a palliative care or hospice team to help devise a plan for symptom control.)

• Anger: It’s perfectly normal for a dying person to be angry. Even people who aren’t actively dying may feel anger and resentment at losing abilities they once had, such as the ability to get around independently or drive a car. If you feel angry a good deal of the time and/or it is affecting your relationships with those around you, you may wish to speak to a counselor or mental health professional about learning ways to redirect those feelings in other ways.

• Guilt and Regret: A dying person may feel guilty for leaving loved ones behind, or regret for things they didn’t do while they had the chance. Understanding that everyone has regrets, but not allowing them to define who you are is a big step in allowing yourself to heal.

• Grief: Coming to terms with one’s mortality can lead to feelings of loss. Accepting death means giving up the illusion of immortality that we humans hold on to so stubbornly, and accepting that eventually we will cease to exist. Letting yourself feel that grief may allow for a period of introspection that can eventually lead to acceptance of what is to come. 

• Anxiety and Depression: Anxiety and depression are common in people living with a life-limiting illness, many of whom are trying to cope with challenging medical treatments along with the reality of approaching death. If anxiety and depression become overwhelming or debilitating, psychological counseling and/or medication can often help.

• Isolation and Loneliness: Terminal illness can impose a number of limitations on a person’s ability to interact with relatives, colleagues and friends. As time goes by, this can lead to intense loneliness, which is compounded by illness and infirmity. Fortunately, technology such as Facetime, Google Meet and Zoom have emerged to provide an effective bridge between frail individuals and their social network, as well as an avenue for communication with the healthcare team. 

Sources

“Coping with Emotions as You Near the End of Life”. American Cancer Society. https://www.cancer.org/treatment/end-of-life-care/nearing-the-end-of-life/emotions.html 

“Depression, anxiety, and delirium in the terminally ill patient”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC1291326/

Knowing you or a loved one has a terminal illness is often helpful because people who are informed about their prognosis can make informed decisions about their care. Although not everyone chooses to participate in care decisions in this way, knowing that their illness is progressing can help a person living with cancer or heart disease decide what therapies to pursue or decline, or when to transition from curative to comfort care. An accurate prognosis also gives a terminally ill person an opportunity to get their affairs in order, to make memories with loved ones and to say goodbye. 

Unfortunately, however, some patients never get the kind of information they need to make informed choices about their care as they approach the end of life. There are many reasons for this, but one of the most notable is the fragmentation that characterizes health care in the U.S. Patients living with a terminal illness typically have several doctors, including a primary care physician and one or more specialists involved in their care. If they visit an emergency room, they will see an ER doctor, and if they are admitted to the hospital, they’ll be in the care of a hospitalist, and perhaps an intensivist if they are sent to the ICU. With all these different doctors involved, end-of-life conversations sometimes simply don’t occur. 

Another reason why many patients aren’t told their illness is terminal is that doctors are uncomfortable talking to their patients about death. Although medical schools are beginning to teach their students about communicating with patients who are nearing the end of life, as recently as 2016, 88% of medical residents in one teaching hospital said they had no training in end-of-life discussions during their residency, and about half reported no formal training on end of life in medical school. Doctors who have been in practice for many years tend to have even less formal training, and may feel less equipped to discuss end-of-life care. As a result, many patients who are terminally ill are unaware of their prognosis and unprepared when they learn they are about to die. 

With that being said, people living with a serious illness have a right to ask questions of their care team, and many physicians welcome the opportunity to discuss prognosis and goals of care if the patient indicates they want to know more. It may be difficult to broach the subject, and some people may choose not to do so. If you feel you can benefit from more information, feel free to ask your treating physician to schedule a conversation about your values and goals. 

Sources

 “Hospitalisations of patients with cancer in the last stage of life. Reason to improve advance care planning?” National Library of Medicine.  https://pmc.ncbi.nlm.nih.gov/articles/PMC9788226/ 

 “Perspectives on death and dying: a study of resident comfort with End-of-life care”. BMC Medical Education. https://bmcmededuc.biomedcentral.com/articles/10.1186/s12909-016-0819-6 

 “Why many doctors still find it difficult to talk about dying with patients”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC6312518/