One night while checking on his patients in a palliative care centre, the therapist risked asking a confusing question to a person whose universe had shrunk to the size of his sickbed: “What brought you joy today?” The answer was immediate: “Being alive.”
We are all aware that sooner or later we will die, and that if we live long enough, we will experience the loss of many of the dearest people in our lives. Despite knowing this fact, the news that we are counting our last days, months or weeks drops like a bomb on us.
We are no less troubled when the gloomy prognosis refers to someone close to us. The news suddenly divides our lives in two irreconcilable stages: before and after; the time in which we knew that no one can escape death and the time in which we are forced to look at its shadows engulfing all our plans and future hopes.
Change comes bundled with stress, and in this case we are dealing with “the biggest change an individual is confronted with—that of no longer being alive”, says pediatrician Chris Feudtner.
The fact that most of us don’t know how to manage our interactions with those who do not have long left to live is a result of the modern vision of life we have built, which displaces the inevitable moment of the fall of the curtain from the centre of attention.
Placing death in the context of modern thinking
The impossibility of imagining the world without us fuels an entire industry, which promises to prolong our lives and to cheat old age, although in reality it often sells mere illusions or only half-wins.
Medical discoveries have brought with them a new dilemma: “What should we do when we are no longer able to do anything?” notes resident doctor Dhruv Khullar, from the Harvard Medical School. The special care that the terminally ill can benefit from often offers more time, but not necessarily more quality of life, says Khullar. These assertions are supported by studies showing that certain life-prolonging treatments come bundled with a series of losses that call into question the effectiveness of this ‘advantage’.
In the last six months of life, on average, American patients go to the doctor 29 times, and in the last month of life, 1 out of 2 Medicare beneficiaries ends up in the Emergency Room, 1 in 3 ends up in intensive care, and 1 in 5 undergoes surgery in a hospital—this despite the fact that 80% of patients state that they wish to avoid hospitals and intensive care units in their last days of life.
The insistence of prolonging life at all costs sometimes means just replacing a quick and less painful death with a slow and agonising one, affirms cardiologist Sandeep Jauhar. He supports his assertion with the example of the cardiac defibrillator—this can prolong life, but Jauhar makes sure that those patients who are near the end of their lives understand what they gain and what they lose by choosing this device.
In fact, our problem is that we have come to view death as a strictly medical issue, and the doctor has become a sort of priest who mediates between life and death, the latter being a result of the ‘failure’ of the medical act.
This view shows a substantial change in the way in which we relate to death, say Sue Brayne and Dr. Peter Fenwick, the authors of the book Nearing the End of Life. If, in the last half century people died at home, surrounded by family, today they die in hospitals or care centres, which turns the contact of the modern man with the death of his fellowmen into a rather rare experience. Everything we know about death is second-hand, point out the authors, and comes either from books, or movies, where experience has completely different nuances than in reality.
Precisely because we exile death from our daily space, we do not know how to react in its presence, and the distance we impose towards the people who have already been touched by its shadow robs us of knowing the needs and profound desires they have.
What matters in the end
A survey from 2016 showed that, when thinking about their own death, people feel it’s very important to be at peace in this final stage. In fact, 88% of Brazilians deemed it important or very important to be spiritually at peace when crossing this border. Only 65% of Italians and approximately 75% of Americans and Japanese thought this aspect is important when the hour of death is near.
Other things that mattered for people considering their death are not burdening their family financially (for almost 90% of Americans, over 80% of Japanese and around 70% of Brazilians and Italians), the lack of pain and a relative state of comfort—Brazilians were the ones who cherished this the most (over 85% of respondents) and Japanese the least (less than 70%). Also being surrounded by one’s loved ones in the last moments was important to more than 80% of Brazilians, Italians and Americans. Living as long as possible was a priority for 70% of Brazilians, while the percentage of Japanese desiring this did not even come close to 20%.
In America, Italy and Japan, people with a higher education were the most prone to cherish the alleviation of pain rather than prolonging life, but also to mention the role of the family and the patients themselves in the decisions regarding care in the last days of their lives.
Of course, the way in which you look at death depends a lot on the distance from which you view it—and the testimony of those who know they do not have long to live often shows that their vision on the truly important things can undergo dramatic change.
When she created a blog, nurse Bronnie Ware did not imagine that her fourth post would attract 1 million readers in the first year and another 7 million in the next three years. The theme of the post was meant to arouse the most vivid interest. Bronnie wrote on the five biggest regrets haunting terminal patients. And the voices of those who are preparing to die “has a gentle authority” over the ones who are not confronted with the end, but know that the day will come when they will have to face it.
Dying people wish they had lived according to their own needs rather than those imposed by others, had worked less, had expressed their feelings more often, had kept closer ties with friends, and had been happier—simple things which become unexpectedly valuable once the perspective of their loss is spotted on the horizon..
Bronnie was not troubled by those who questioned the authenticity of these regrets. Emphasising that these were not the object of scientific research but only the fruit of her observations and the conversations she had with her patients, the former nurse concludes: “As long as there is a denial of death at the level of the society, there will always be a need for these small, subtle messages.”
In fact, as long as the subject of death remains taboo, those living in their last days feel extremely isolated from the rest of the world, especially in a moment when they are confronted with an avalanche of still unknown emotions. This stage should, however, not stand under the mark of isolation—on the contrary, now patients are in serious need of a doctor who would be, in the words of professor John Ashton, “the equivalent of a midwife at the end of life”.
Suspended between truth’s sharp edges
The way in which the news of imminent death is communicated has a strong impact on a person—and the same goes for discussions about death which loved ones do or do not have with the person.
It’s hard to find a doctor who communicates the news of a serious illness in human and non-clinical terms, writes journalist Chrissie Giles, whose father lost the battle with an aggressive cancer.
One needs to communicate clearly but emphatically, keeping the door open for hope, and avoid creating the impression that one is getting rid of a task one cannot delegate, says doctor Kate Granger.
Her own experience—being diagnosed with a rare form of cancer at 29—influenced her conversations with terminal patients, infusing them with more than her regular dose of compassion.
On the doctor lies the pressure of finding a balance between honesty and truth.
A study conducted at British Colombia University concludes that dying people have three fundamental needs: truth, connection and time.
While physical and emotional connection strengthens them to be able to “embrace death while they are alive”, they need truth regarding what the future holds, “but not to the disadvantage of hope”. And they need the truth regarding the shortness of the remaining time precisely because this becomes all the more precious as it shortens.
Neurosurgeon Paul Kalanithi, from Stanford University, speaks about his need to know what the statistics said about the form of cancer he had been diagnosed with when he was 36, although as a doctor he had always discouraged his patients’ fervent search for data and statistics. Consigned to the patients’ rows at the oncology section, Kalanithi began to discover the human thirst for knowing how close the end is. Depending on this information, he would decide how to spend the remainder of his life: if he only had 3 months left, he would dedicate himself exclusively to his family, if he still had one year left he would start to write the book he had always dreamed of writing, and if he still had a decade left he would return to his role as a surgeon.
Those who are nearing the end of their lives need honesty and openness not only in the conversations they have with medical professionals, but they often feel the need to have heavy discussions in an open way also with the people close to them. This is an art which family and friends must sometime come to master over a very short period of time, without ever having graduated from a course on this matter.
Honesty, like an obstacle race
It is pretty easy to resort to extremes when someone close to you receives a hopeless diagnosis—either to treat the person as if death is not a probable scenario, or to focus on the illness, and not the patient’s needs.
Reluctance on every side to talk about what is happening degenerates into a game of dissimulation, in which death becomes the “elephant in the room” that everybody sees, but pretends it’s not there, say Sue Brayne and Peter Fenwick in the book they’ve dedicated to this subject.
People who know they are about to die need to share their unrest. Their emotions and thoughts are extremely various, as shown by a bold and novel project developed by photographers Walter Schels and Beate Lakotta. The photographers took before and after death photos of people and recorded interviews with them in their last days of life.
Death is an experience which reshapes all the expectations a person has, so honesty must be paired with compassion, empathy and emotional support, both physical and spiritual. It takes a helping hand, note Brayne and Fenwick, which the person knows he or she can cling to at any time, and a willingness to listen—one of the biggest gifts you can give someone dying, the authors claim. Difficult talks can cause fear and discomfort, but they are necessary when the person is someone you care about.
Kate Bowler, who teaches History of Christianity at Duke Divinity School, knows, from her own experience as a patient diagnosed with stage IV cancer, how inappropriate people’s reactions can be to the dramas of those who are not expected to live much longer.
Sailing the turbulent waters of a tragedy they as yet know nothing of, healthy people often clash with the need of the seriously ill for hope and minimum normality. Bowler classifies those who blunder, often well-intentionally, into three categories: minimisers, teachers and solvers.
Minimisers, with their “Well, at least…” refrain, are always ready to contrast the suffering of the person standing in front of them with another, “worse off” sufferer. They are eager to point out that the suffering person should be grateful that the burden they are carrying is not as great as another’s. (This is how Bowler came to “learn” that cancer is to be preferred to living through the Iranian revolution.) Minimising suffering is also insinuated at a spiritual level; many Christians insistently misapply an idea which might be correct in and of itself, that of the infinite value of the eternal life promised by God, but which is not particularly helpful to a person not ready to leave this life. If freeing ourselves from this body of dust is what we wish to happen, writes the professor, then the temptation emerges to ask the minimisers just how willingly they would embark on this journey as soon as possible. At the other end of the belief spectrum, atheists can also minimise suffering, says Bowler, by making appeals to look at life and its blows as such, in a universe which cannot be more than it already is.
The teachers are those who are always ready to convey that illness or death’s imminence are a sort of “test” that the protagonists must pass with flying colours, and mature as it unfolds.
Solvers seem to believe that the other person’s salvation is always just one piece of advice away—the one they try to push on the sick person. Their enthusiasm might be contagious were it not for their disappointment when they see that the dying person is not fighting hard enough to save him- or herself through the magic supplement, Bible verse or mental attitude they recommended. Bowler concludes that, aside from the pinch of truth these pseudo-saviours bring along, their attitude is hard to swallow—to them, the sick person is no longer a person, but a case which they carefully dissect, with their own instruments, just to pronounce a verdict.
All this, when probably the biggest need the person nearing death feels is that of being considered the same person with the same value, despite all current or future losses, that he or she was up until this moment.
To be present where everything is falling apart
We probably imagine that, when meeting a fellow being who is living his last days, we ought to come up with big words, without which we are paralysed. But the truth is that small gestures can offer more than words.
A calm and loving environment, in which physical, emotional and spiritual needs are met, is what can make a real difference in the days or months of suffering.
Each day of a person suffering from an incurable disease is a fight, neurosurgeon Paul Kalanithi eloquently presents—finding the balance between the conviction that he is no longer able to continue, and the decision to move forward. It is a choice between focusing on death or on investing whatever he has left in the life he still has.
This is a fight witnesses cannot engage in on behalf of the sick person, but which they have the privilege to witness by bringing a note of comfort and support: “Other people’s love is what helps us when we lose our love”, says psychotherapist Julia Samuel. This is a declaration which concerns both the mourning persons and those on their deathbed who are gradually losing what they have loved.
It might be no coincidence that of all senses, hearing and touch are the last ones to disappear when a person is living his last hours. Up until the very end, a good word and a loving touch are needed—it’s what we have been offered, on another scale, by the Word made flesh for us. That Word who united dust and eternity, strengthening the fact that we are more than “breathing pieces of flesh”, despite our fragile, mortal condition.
Carmen Lăiu is a writer for ST Network and Semnele timpului.