“In films you often get dying words: someone gasping out things like ‘Please tell Jim I love him’, which sort of makes me laugh. I’ve never seen that happen,” says psychologist Lesley Fallowfield, highlighting the discrepancy between how people usually die and our misperception of how life ends. Not only is the transition from life to death usually slow, involving a period of loss of consciousness, but death also never looks like it does on screen.
Modern life has helped us to exile death beyond the horizon of our experience and concerns, so we no longer know much about it except the romanticised information provided by books or films. Consequently, we are reluctant to address this topic, especially when it affects us or our loved ones.
In a 2019 survey conducted by the Academy of Medical Sciences and Ipsos MORI, a third of Britons did not answer questions about the end of life, suggesting that death is a taboo subject for many people. The survey showed that people’s knowledge of death comes more from documentaries (20%) and films (16%) than from healthcare professionals (22%), and that six out of ten people know little or nothing about what happens in the last hours of life.
This investigation formed part of a larger Academy of Medical Sciences project which aimed to encourage open discussion about death and to identify public opinion on what death means and how political and medical measures could improve end-of-life care.
While some may view issues related to death as macabre, Fallowfield argues that people need to prepare in detail for everything related to their own death, which can be predicted. He claims that a death plan is just as necessary as the much more popular birth plan. This spares the family avoidable regrets and allows them to live the last moments of life in a less traumatic way.
“It’s quite awful when you see families who’ve never talked about it having these hollow conversations and feigned smiles about a future that’s never going to be realised. When you see families who have openly acknowledged death, they often share sad and tearful moments, but also laugh and comfort each other,” the psychologist pointed out.
In fact, talking openly about death and leaving instructions on how to resolve all the problems and make all the decisions that arise before and after someone’s death can be a final gift to family and loved ones. It is an act of love towards those who will have to endure a painful loss, as journalist Carol Rääbus points out.
Freeing loved ones from burdens
Preparing a will is one of the issues that should be resolved early on to clarify property matters and prevent family disputes. Lawyer Bridget Rheinberger says this is something everyone should do, even if they are young and don’t own much property.
Sixty per cent of adults in the UK have not made a will; in the US, that figure is 57%. “Statistics show we are very unprepared for death,” says Michael Hebb, author of Let’s Talk About Death Over Dinner and founder of the Death Over Dinner organisation. The organisation aims to bring people together for informal gatherings to discuss this taboo subject.
Starting from the simple yet difficult-to-process idea that everyone will eventually die, Hebb says his initiative began with the realisation that “the way we die in western society is broken” and that “we are death-illiterate, and when we don’t discuss death we are not empowered to make decisions.” When Hebb was 13 and his father died, he felt that his family had failed to cope with the loss. As an adult, he became convinced that the modern system of dealing with death could only be remedied by transparent discussions about end-of-life issues while the person is still alive.
In some cases, it may be helpful to empower a trusted person to make medical or financial decisions on behalf of someone who, although alive, may be unable to decide for themselves. Where possible, a treatment plan should be prepared so that medical staff know whether the patient wishes to be kept on life support or to donate their organs, for example. Regarding this matter, Hebb asserts that detailed conversations must take place between the person being empowered and the person entrusting them with the responsibility of making final decisions. This ensures that the former understands what the person they are representing would want.
Even drawing up lists of wishes regarding care during illness, management of social media accounts, or funeral details could help loved ones, although it may be emotionally uncomfortable for the person concerned. Rebecca Lyons, an end-of-life doula, points out that, while not every possible decision needs to be made, family members should be left with the feeling that they know what the deceased would have wanted and that their decisions are the right ones.
Although planning the final details can be one of the most difficult things you will ever do, “this isn’t about you, but it’s for them”, says Lyons, emphasising the importance of alleviating the burden on survivors.
Once the medical, financial, or legal details have been taken care of—or perhaps even before these issues are addressed—the person preparing for the end of life needs to say goodbye to their loved ones. They, too, need a final conversation. According to a geriatrician, how the dying person and their loved ones manage the separation can mean the difference between a peaceful death and a traumatic one.
A final letter
The most common emotion expressed by patients in the final stages of illness is regret, says V. J. Periyakoil, who has worked as a geriatrician and palliative care physician for 15 years. This regret is often linked to flawed relationships with family and friends, not expressing enough love, and fear of being remembered by children as hypercritical or overly authoritarian parents.
Following a memorable experience with a patient who had spent half a century of marriage without confessing his love to his wife, Periyakoil created a letter template in eight languages to help patients express gratitude to loved ones, share fond memories, ask for and offer forgiveness, and say goodbye.
Although this letter was originally designed for patients with chronic illnesses, Periyakoil realised that healthy people could also benefit from writing such a message. “There are some unexpected deaths where someone has a traffic accident, and then the family spends years looking for some sign, some message from the dead person,” Dr Periyakoil explains.
However, some people are reluctant to write a farewell message for fear that it could be a self-fulfilling prophecy, which is why the doctor recommends writing only passages that make you feel comfortable.
In any case, writing such a letter requires courage and can unleash strong, sometimes unpredictable, emotions. The author of this template knows this from experience—it took her several attempts before she could faithfully express her thoughts and feelings on paper.
Periyakoil recommends this exercise to everyone, regardless of age or health. She argues that it has healing potential for relationships and helps us to recognise our true priorities in life, which are so easily lost in the hustle and bustle of everyday life. For those facing imminent death, for family members who need to hear how loved and valued they are, and for those expecting to live for many more years, this letter could be the most important one ever written.
No reason to be afraid?
Talking about death is a joke, said Danish philosopher Søren Kierkegaard, as long as you don’t undertake this discussion while facing your own death, emphasising the difference between awareness of a universal reality and the shock of personal confrontation with that reality.
Many discussions and actions that need to be taken in the face of death never take place due to the fear experienced by those who are dying and their survivors regarding this unknown event.
Researchers have found that the fear of death underlies many positive behaviours, influencing decisions such as choosing a healthy lifestyle or working towards a peaceful society. At the same time, the fear of the scenario of one’s own death could even degenerate into a mental health disorder.
We have too many unfounded fears about death, writes Ralph Lewis, a professor of psychiatry at the University of Toronto. Fear of pain is one of the most common, he points out, adding that, although we cannot know what people feel when they die, there is no medical reason to assume that the pain or discomfort experienced in this process is greater than that experienced in various illnesses or injuries.
“The extent of the human capacity to endure suffering is often very surprising,” writes the professor, noting that, while this applies in extreme cases of intense suffering, the most common scenarios of death do not involve such pain. Ultimately, no one will “feel” death, Lewis explains, because, biologically speaking, death means the total extinction of consciousness. Quoting Epicurus, the professor emphasises the irrationality of fearing an experience that cannot actually be encountered.
The fact that we fear death without reason was also the conclusion of researchers who compared the perception of death among ordinary people with that of people who knew they were going to die soon.
A 2017 study tracked the social media posts of people with terminal cancer or ALS, analysing them alongside the notes of a group of participants who were asked to imagine they had been diagnosed with cancer and had only months to live. The online blogs of the terminally ill patients were more positive than those of participants who had imagined they were going to die, and the positivity of their language increased as death approached.
The experiment was repeated by comparing the final words and writings of prisoners sentenced to death with those of subjects who had merely imagined experiencing this scenario. The conclusion was that the messages of those about to be executed contained less negativity.
“I imagine this is because they know things are getting more serious, and there’s some kind of acceptance and focusing on the positive because they know they don’t have a lot of time left,” explained Kurt Gray, one of the study’s researchers. He emphasised the mental adaptability of humans, stating that “we can be happy in prison, in hospital, and we can be happy at the edge of death as well.”
Commenting on the study’s findings, Havi Carel, a philosophy professor at the University of Bristol, emphasised the idea of adaptability, noting that we get used to the idea of death just as we have to countless changes throughout our lives. “The initial shock after receiving a poor prognosis is horrific, but after months or years of living with this knowledge, the dread subsides,” he says.
At the same time, he notes that blogs are written for public consumption and therefore often only contain the information and emotions that the authors intend to convey to the outside world. While they may be truthful, posts may also present a brave face or shape the image that the authors would like to be remembered by, so more personal writings, such as letters or diaries, may better capture how people facing death feel and think.
“The study does not show that people at the end of their lives view death as a purely positive experience,” says Nathan Heflick, a lecturer at the University of Lincoln. He points out that there is a notable difference between viewing death less negatively and accepting or desiring it. “People will fear death. These people dying feared death. They just didn’t fear it as much as people think they would,” Heflick concluded.
A solvent for fear
“The way to value life, the way to feel compassion for others, the way to love anything with greatest depth is to be aware that these experiences are destined to be lost,” writes American psychiatrist Irvin Yalom in his book Staring at the Sun.
The message Yalom conveys, one that is already well established among specialists writing on this subject, is that only by being aware of the fragility of life can you learn to truly enjoy yourself, to experiment, to grow, and to strengthen your bonds with those around you, comments Ralph Lewis.
Still, how can we truly enjoy life and all its beauty when death is always looming? Could we compare this experience, albeit on a different scale, to that of a death row inmate who has been offered a last meal with all the trimmings, and the company of loved ones, while the executioner waits patiently outside the door?
Michael Hebb says that the pain felt in the face of death cannot be dispelled by faith, which “plays a role, but it isn’t as central as you would think. Grief will exist regardless of whether or not people have faith.”
Several studies, including a somewhat recent one conducted in 2018 by Dutch researchers, have shown that people who have lost their religious beliefs express the most obvious anxiety in the face of death. However, the studies also showed that those with “moderate” religious beliefs were more afraid of death than those with no religious beliefs or those who were firmly anchored in religion.
Nevertheless, the study showed that the fear of death can be overcome by accepting the inevitability of death and becoming familiar with it through the funerals of loved ones or as we grow older.
Faith is not the only remedy for the fear of death and perhaps it is not intended to be just that. Even dedicated Christians may ardently desire to live longer since the “thought of eternity” has existed since the creation of the world. They may also fear unwanted experiences and events, including death.
“When I am afraid, I put my trust in you,” said King David, confirming that the hallmark of a life lived close to God is trust rather than courage.
Fear can strike at any time, especially when faced with the unknown, pain, or separation, but we can heal from it by changing our perspective. We can choose not to be consumed by its shadows, but to entrust ourselves to the One who descended into the darkness of the world to bring life and light.
After humans chose disobedience and death in the Garden of Eden, God made a new promise that cost Him everything: “I am the resurrection and the life. The one who believes in me will live, even though they die.” While this promise does not negate the reality and pain of death, it places faith at the foundation of the greatest gift ever offered in the history of the planet: a life that endures as long as His own.