Why Do We Fear People with a Terminal Illness?

Maybe it's the discomfort we have in dealing with end-of-life issues.

Posted Jul 10, 2019

Have you ever been in a situation in which someone you know has a terminal illness and you see them and don’t know what to say or do? You may feel uncomfortable for fear that if you say or do something wrong, it might make matters worse for them.

The reality is that many people feel discomfort in such situations unless they know the individual well. And even then, there may be trepidation in having anything other than “small talk" conversations. Why does this fear exist?

  • We may not know how much the individual is aware of their condition and/or how accepting or adapting they are to it.
  • We may have our own fears regarding terminal illness issues, death, or even poor health.
  • There may be cultural issues in which matters related to death are not discussed with the person who is ill (e.g., an elderly terminally ill woman from a certain culture has adult children who insist that she not be told of her condition). 
  • We may be afraid to say anything meaningful that might possibly risk offending the individual’s religious/spiritual beliefs.

Historically in America, there has been an effort to “deny” death, and so we veer away from talking about death and end-of-life issues. Although more recently “death awareness” has grown, there is still a reluctance to discuss death and dying in everyday conversation. Even within the medical arena, many health professionals have difficulty working with end-of-life issues. If health professionals trained to deal with life-threatening matters have these problems, how can those with no professional exposure to death fare any better? 

There is no question that a discussion regarding terminal illness can be distressing. It forces us to face the reality of own mortality. This fear, as well as others, may play a role in people’s reluctance to talk or even approach a person with a terminal illness. Moreover, we may feel like we are “rubbing salt into the wound” by reminding the person of their illness and all the negative emotionality associated with it.

At best, the avoidance of the topic, and at worst, the avoidance of the individual, can be interpreted as protective measures for them and us. But is this really so? Just imagine how the person feels. Not only are they facing death, but people avoid them as if they have a contagious disease which no one wants to risk catching. In some ways, this may be an accurate analogy for certain people who believe that talking to someone who has a terminal illness will affect their own health—if not physically, then certainly mentally. The shame of this is that we are doing a disservice to both ourselves and others.

Many terminally ill individuals are afraid and want to talk to people about their thoughts and feelings regarding their condition. They are desirous of comfort and support in their time of need. They may have questions about their illness, as well as other questions that they want to have answered before they die; or they may simply want to talk to others about issues unrelated to illness and death. They are attempting to cope, yet their efforts are being thwarted by people who won’t interact with them or who do so superficially.

Many people believe that talking about death with someone who has a terminal illness will arouse feelings of anxiety, depression, and hopelessness within the ill individual. Although this does happen, it has been found that terminally ill patients want to meet with others, especially those who have similar conditions. They are able to not only compare their experiences (not necessarily dwell on them) but can also share how they manage their symptoms and how they are living the best way they can.

Given the inevitability of our demise, we should all work toward making each other’s lives as hopeful as they can be. Schapmire, Head, and Faul (2012) explored the experiences of people with advanced cancer; the following are paraphrased (and elaborated upon) suggestions of what family, friends, and others can do for those who are terminally ill.

  • Frequently, people are very supportive when individuals are first diagnosed with a terminal illness. Do not abandon them as time goes on; they will need your presence and support throughout the course of their illness.
  • Engage in conversation that encourages the individual to discuss whatever they want to. Allow them to express their emotions and thoughts without obstruction. Do not discourage them from expressing unpleasant emotions, such as anger and regret because it makes you feel uncomfortable.
  • Encourage them to be hopeful and to live as normally as they can. Emphasize how they can “live” even with their condition.
  • Reinforce hopefulness and confidence. Focus on the positive and how the person can cope.
  • Address the meaning of one’s life and refer to spiritual, religious, cultural, familial, or any other source that enhances the person’s spirits.
  • Most importantly, be willing and able to listen. It may not be pleasant for you but bear in mind how you are helping someone in need. Remember that the simple act of listening can be a powerful prescription.

The desire for human connection when confronting a terminal illness is very strong. Many such people are not afraid to discuss their condition or its ramifications; rather, they are afraid of being denied the comfort of support. If there is ever a time when sensitivity and thoughtfulness are needed, it is now. Doing so is the ultimate kindness.

References

Corr, C. A. (2015). The death system according to Robert Kastenbaum. Omega: Journal of Death and Dying, 70, 13-25.

la Cour, K., Nordell, K., & Josephsson, S. (2009). Everyday lives of people with advanced cancer: Activity, time, location, and experience. OTJR: Occupation, Participation and Health, 29, 154-162. DOI: 10.3928/15394492-20090914-03

Schapmire, T. J., Head, B. A., & Faul, A. C. (2012). Just give me hope: Lived experiences of medicaid patients with advanced cancer. Journal of Social Work in End-of-Life & Palliative Care, 8, 29-52. DOI: 10.1080/15524256.2012.650672

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