WHEN QUALITY OF LIFE BECOME MORE IMPORTANT THAN ROUTINES
Some time ago I was listening in a palliative care ward, a place where people come when the disease can no longer be cured and the focus gradually shifts to something else, to alleviate suffering, create security and provide the best possible quality of life during the time that remains. Many of the patients are in the absolute final stages of life. Some return home or to their accommodation again, but many never leave the ward. Death is constantly present in the rooms, in the corridors, in the conversations. Yet it was not death that struck me the most during the day, but life.
Something happens in healthcare when you know that time is limited. Perspectives change, the pace changes, priorities change, almost as if what is otherwise experienced as important in the constant movement of healthcare loses its grip and leaves behind something more stripped-down and human, where the very essence of care emerges more clearly when the layers of performance, administration and efficiency are no longer at the center in the same way.
In palliative care, people often talk about the four cornerstones: symptom relief, teamwork, communication and support for relatives. During the day, it struck me that those words mean something much greater in practice than they initially sound in the literature. Palliative care is not just about medical treatment at the end of life, but about how a person should continue to be a human being all the way until their last breath. When a cure is no longer possible, relief becomes all the more important, not only relief from physical pain but also from fear, anxiety, loneliness, worry, existential suffering, and the sadness that arises in the people around them.
The literature on palliative care has a different tone than much other care literature, something more philosophical and existential runs through the texts, since the questions ultimately concern what it means to be human when life can no longer be controlled or postponed. You can't always prolong life, but you can still influence how life is experienced. That difference is enormous.
The day brought back memories of Buddhism and what I had read over many years about suffering and the human relationship to pain, fear and death. Buddhism revolves largely around reducing suffering, ending suffering, and even though it usually refers to an existential and mental level, the parallel to palliative care was almost impossible not to see. On the ward, suffering was present in many forms at the same time, physical pain, shortness of breath, worry, anxiety, existential fear, but also the suffering of relatives and the grief of people who were about to lose someone they loved. There, something of the most human also became visible.
Doors opened and closed, in a palliative care unit there are no visiting hours, but relatives are allowed to come whenever they want and even stay overnight. Relatives came and went. Someone sat quietly by the edge of a bed and held a hand. Someone cried in a relatives' room or talked to a doctor and tried to understand the signs of how much life was left, while someone else tried to accept that a person they loved would soon no longer be around. In the midst of all this, the staff stopped again and again, not only for the patients but also for the families around them. They asked how the relatives were feeling, waited for their reactions, gave people time to understand, time to breathe, time to just be in what was going on.
In many other care units, I experience that the pace is so fast that presence gradually disappears behind routines, documentation and time pressure. Here, instead, they seemed to start with the person. You didn't just walk into a room, perform a task and move on, but stayed, looked, listened, waited, as if the very presence was part of the care rather than something that interfered with efficiency. I thought several times during the day that all care should actually be based more on the fundamentals of palliative care, not because all patients are dying, but because it begins in something deeply human. The question constantly seemed to be what is most important for the person in front of us right now, what creates the least suffering, what creates the most dignity, what is most life-affirming in this particular situation.
I was fascinated by how clearly the role of the nurse emerged there. In many ways, the nurse came closer to the very core of her profession than I had previously seen in other parts of care. Even though the nurse is always responsible for the care, observes changes, follows the patient's general condition and, together with the assistant nurse, is closest to the patient in everyday life, that role was really given a place here.
The nurses worked largely based on the clinical gaze, their own senses, their intuition. They observed breathing, facial expressions, skin color, small changes in anxiety and presence, and read the person in front of them rather than just parameters on a screen. In many other departments, people are constantly running between NEWS checks, blood pressure, pulse, saturation and temperatures that must be documented several times a day, and there is of course great value in that, since deterioration can be detected early and care becomes safer. Here I also saw something else, the courage to sometimes remove what no longer benefits the patient and instead trust the clinical gaze. What does it really add to waking a dying person for another blood pressure check when the result no longer changes anything? What does it add to lifting a seriously ill person out of bed for a weight check if it only causes more pain and discomfort? Several times I heard the nurses ask back to the doctors and decision-makers, is this life-affirming, does this provide quality of life, and if the answer was no, they could also say no.
On the palliative ward, people started from a different perspective than in many other somatic care settings. The question was rarely how long you can keep the body alive. It was rather how people can live as well as possible in the time that remains, and the difference between the two perspectives is considerably greater than you first think.
The first thing that met me when I entered the ward was that a person had just fallen asleep, or died, as is more specifically expressed in palliative care. Saying that someone had fallen asleep, passed on, or using other descriptions can create unclear communication, especially in meetings with relatives and children, and therefore people are not afraid to use the word death when necessary. People often need something concrete to relate to. Death was therefore there from the very beginning, not as an abstract idea but as something very concrete and present. At the same time, it wasn't dramatic in the way you might imagine. No panic, no harshness, no coldness. What struck me was the gentleness, the silence in the room, the way the staff moved around the body, how slowly everything had to go.
There is something very dignified in the way a person is cared for after death. The body is washed gently, hands are put in order, the covers are straightened, the room is prepared with light and dim lighting, and a window is opened so that the soul can fly free. Someone gently strokes the hair and combs it one last time. You speak calmly to the person and tell them what you are doing, even when the body is no longer responding, and in the midst of all this it became clear that the care continues even after the last breath, as if human dignity does not end just because life has left the body.
It made a strong impression on me, perhaps because society in general often keeps death at a distance. Many are terrified of dying, so afraid that the fear itself almost consumes the life they actually have. Many people never see a dead person in their entire lives and barely utter the word death. Death is hidden away, sterilized, removed from everyday life, even though it is the one thing we all share with certainty. In the palliative ward, there was no escape from that reality, but I still did not experience the environment as dark. It felt human and bright, because almost everything, despite the constant presence of death, revolved around life, how people could feel as good as possible in the time that remained, how pain could be alleviated, anxiety calmed, shortness of breath reduced, calm created, how someone could manage to sit up a little longer with their loved ones, avoid the feeling of suffocation, or fall asleep without fear.
Almost the entire society seems organized around a fear of death. We work as if time were infinite, stress as if life begins later, worry about things that may not ultimately turn out to be particularly important. In the palliative ward, there was no escape from the realization that life is actually limited, but I did not experience it as depressing but rather as life-affirming. When death is near, life becomes clearer. The only thing we actually have, no matter how much time we think we have left, is the moment that is here and now. In the present, we are all equal in the face of life and death, and what we do with that moment determines the quality of everything, no matter how much time remains.
Many people say they could never work with death and the seriously ill, but after that day I felt almost the opposite. The people there did not work primarily with death. They worked with life, with man's last chance to still feel dignity, presence, love, peace. The difference is enormous.
We run fast, fill our days, push ourselves, try to control the future, often live far from both our bodies and the present. Only when something serious happens do many people stop and start asking themselves what actually matters. In the palliative care department, that question is asked all the time, and the answers are strangely rarely about achievement. No one lies there at the end of their life wishing for more meetings, more emails, more hours in the office. People long for closeness, for love, for feeling seen. Avoiding death is often based on the fear of dying, while living fully and truly is based on the joy of life and presence, and I believe that many people live their lives with a focus on avoiding death rather than appreciating what is actually here and now. The risk is that you become a kind of living dead in your soul.
Something else also became clear in there, how much communication takes place without words. Many patients at the end of their lives can barely express themselves anymore. They can't bear it, are medicated, slip in and out of consciousness, become disoriented, and then the gaze, the hands, the presence suddenly become the most important language in the room. I saw nurses and assistant nurses holding hands for long periods without saying much, because a hand can convey calm and security when words are no longer enough. I saw how people sat down at eye level instead of standing over someone, how they met their gaze with both intensity and softness to really see the person, how they patted a head, adjusted a blanket, or just sat there for a moment longer to create calm.
The whole care was based on regulating fear. When people are in pain, are seriously ill, feel that their bodies are about to give up, a strong anxiety often arises, especially when breathing is affected. Wheezing, shortness of breath and the feeling of not being able to get air arouse a deep existential fear that goes far beyond the rational, because the body instinctively reacts to the threat to survival. In those moments, it became clear that the most important task of the nurse was sometimes not about technology or advanced procedures, but about creating calm. People immediately sense whether someone else is stressed or safe, nervous systems react to each other all the time, and the staff here had an intuitive understanding of this, even if they might not always put it into words. There was a dignity in the slowness, an understanding that some situations cannot be stressed through without something human being being lost. I no longer believe that palliative care is primarily about death. I believe that it is about how we live until it happens.
For the first time since I started moving around in different wards, I experienced that nursing was fully at the center, not as a complement to medicine but as the very foundation on which care rested. In many other wards, it feels like the nurse is constantly trying to catch up with a system that is driven by measurement values, documentation, medication lists and logistical flows. Here, all of that was still there, but it was not at the top of the hierarchy in the same way. Something else did it, the human being, and that gave the nursing profession a completely different weight. The nurses functioned as the patient's main protectors. They saw the changes first, heard what was not always said out loud, picked up on things that no parameters in the world can really measure, how someone looks, how someone breathes, how the skin changes, how the anxiety feels in the room, whether someone is starting to let go or is still struggling. It is a kind of knowledge that is difficult to write into a protocol, but which is at the same time deeply clinical. To really see.
If a doctor suggested a measure that risked causing more discomfort than benefit, the nurses could speak out, calmly, clearly, rooted in the patient's best interests. Someone told me that they had refused to lift a seriously ill patient out of bed for a weight check, because it would only cause suffering without changing the care going forward. We will not do that, the nurse said calmly. Not during my shift. I thought it was powerful to witness, the courage to protect the patient even from the care system's own routines, when the routines no longer served the person before you. In many other environments, routine almost always wins, people continue to do things because they have to, even though everyone really feels that the situation requires something else. Here, instead, they started with the question of what is actually meaningful for the patient here and now.
This does not mean that medical treatment disappears, on the contrary, palliative care often requires very advanced medical knowledge, but the treatment is subordinated to something greater, human dignity, compassion, well-being. The nurses became the ones who continuously read the situation, interpreted the signals, weighed the medical against the human. In a care that is otherwise becoming increasingly technical and doctor-driven, I experienced that the care here almost regained its original value. The interpersonal did not become something secondary or soft alongside the real care. It became the care itself.
The working group had a different energy than I have encountered in many other departments. Despite working daily close to death, grief and existential suffering, there was a calmness, a warmth, a lot of laughter, almost as if people who work so close to life's most vulnerable moments were also forced to develop a different kind of presence towards each other. Colleagues helped each other spontaneously, took the time to listen even within the team, and somehow became stronger together. In the midst of all the hardship, there was also a lot of life, as if the opposites reinforce each other, perhaps because people who face death on a daily basis also become more aware of how important it is to actually live while you still can.
So how do you alleviate suffering and the fear of dying? In Buddhism, we talk about suffering, human suffering, not just physical pain but also existential suffering, fear, anxiety, the struggle against what we cannot control, the sadness that everything changes and eventually disappears. In the ward, it became almost impossible not to see how many layers of suffering can exist simultaneously in one and the same room, physical, psychological, social, existential. It is called total pain, the different dimensions of suffering that interact and influence each other. If you zoom out to people who live their lives out in society, we all carry these forms of suffering to varying degrees, because they are part of being human. Suffering often arises in resistance to what is. When acceptance becomes possible, suffering loses some of its grip, not because what happens becomes easy or desirable, but because the resistance to reality itself creates further pain. Our ego wants life to look different than it does, and that is where suffering arises. Eckhart Tolle expresses it roughly as if you can face what happens as if you had chosen it yourself, which is easier said than done but carries an important insight, the more we tense up against the pain, the more it hurts, both physically and mentally.
The longer the day went on, the clearer became an insight that feels hard to say out loud, but became impossible to defend against when you saw the suffering up close. Death sometimes did not seem to be the most frightening thing in the rooms. For some, life, or at least the body, had finally become a greater burden than death itself. It sounds harshly formulated, but if you stand close to people who can no longer move freely, who are in almost constant pain, are short of breath, scared, shaky, exhausted, completely dependent on others for every little movement, a different understanding emerges of what it means when the body can no longer bear life. Some were almost locked in their own bodies, not because the will was lacking but because the power was no longer there. The body had done its job. Several times it struck me how natural it could suddenly feel to just want to rest, not to give up on life, not to disappear, just to rest, as if the whole person was finally longing to let go of the struggle.
I thought of an image I had heard before, that life can sometimes feel like walking around in shoes that are a little too tight, and that death is sometimes more like the feeling of finally tying your shoelaces and breathing freely again. The image followed me through the day, because it captured something of what I saw in several people there. When the body has become so heavy to carry, when every breath requires strength, when the pain is constantly there and the freedom of movement gradually disappears, death can sometimes be a liberation as much as a loss. The sadness doesn't go away because of it. It was there all the time, with relatives, with people who would soon leave someone they love, in the rooms, in the looks, in the silence afterwards. Nevertheless, I understood the expression rest in peace in a deeper way than before, because it was sometimes as if the body finally became too cramped for the person who lived in it.
So much of humanity's suffering revolves around the fear of death, while so many live their lives as if they were never really here, as if presence can always be postponed until later. In the ward it became clear that none of us knows how many breaths we have left. Anyone can die at any time. Perhaps quality of life should not be something that becomes important only at the end of life, but something that permeates the whole life, long before the person ends up in a hospital bed and realizes that time was never infinite in the first place.
I also thought that humans may have always intuitively understood that we are something more than just matter. The body consists of atoms and molecules, and the atom for the most part is not even solid matter but energy in motion. Energy never disappears, it just changes form. The death of the physical body can then be seen as a transformation, where the energy continues in another form. For me, the thought became not an attempt to explain death, but rather a way to face it with a little less fear and a little more humility.
Palliative care exposes something that the rest of society often tries to keep at bay, not just death but the fundamental vulnerability of humans. In everyday life, we build so much of our lives around control, achievement, efficiency, future plans, almost as if the body will always function and time will always be available in unlimited quantities. In the palliative care department, that illusion falls away. There it becomes clear that humans are fundamentally dependent on others, on hands that hold, on someone who listens, on someone who dares to stay when life can no longer be controlled or repaired. The environment felt paradoxically more real than many other environments in society, because there is not the same opportunity to escape into achievement or distraction. What remains is the human being.
Many say that they could never work there, because they believe that work is about death, illness, misery. After this day, I almost experienced the opposite. The people worked to make life as dignified, safe and loving as possible until death. It is not about giving up on people, but about never giving up on human dignity.
When I was in Romania on an exchange with the school and visited hospitals there, I encountered a different view of death. The heroic effort often seemed to be doing everything in the power of the healthcare system to save lives, sometimes even when the body had already passed a limit where life-saving efforts no longer felt dignified. In Sweden, at least within palliative care, there is a clearer focus on alleviating suffering and neither prolonging nor shortening life in its final stages. Nursing in many ways returns to its core here, not as something secondary next to medicine but as the foundation on which the rest of the care rests. Being able to relieve, read a room, create security without words, understand when someone needs medication and when someone needs peace, there is something profound in that, especially in a time when so much else is about measuring, streamlining, optimizing.
When I look back on the day, it feels as if I saw care in its most stripped-down form. What otherwise obscures the view temporarily disappeared, and the most fundamental emerged with unusual clarity. Near the end of life, it is no longer possible to pretend that care is only about treatments and medications. All of that is still important, but it is not enough. People need to be seen, to feel safe, dignified, to know that they are not alone.
What happens in a palliative care unit is not really just about the end of life, but about how we choose to meet people when they are at their most vulnerable. Perhaps a society shows its true face there, in how we take care of each other when there is nothing more to gain on the surface. In the midst of all the hardship, I saw something very beautiful. People who tried to create peace even though death was in the room. Nurses who protected patients from unnecessary suffering. Hands that held on, eyes filled with presence, relatives who were seen while their world was changing forever. So much healing that still remains, even when a cure is no longer possible.
Palliative care reminds us of things that society often forgets in its pursuit of efficiency, performance and control. People don't just need to survive. They need to feel meaning while they live, to feel presence, to feel connection. It is strange that we often wait until life is about to end before we start talking about quality of life seriously, as if the question of how people really feel only becomes legitimate when time has almost run out. That question should perhaps be asked much earlier, in care but also in society. What is life really about, if people are constantly stressed, afraid, cut off from themselves and constantly on their way somewhere other than where they already are?
During the day on the palliative ward, it became clear that much of what people long for in the final stages of life is actually the same things that people long for throughout their lives, security, love, peace, presence, the feeling of being fully human. There is still time there to pause for what really matters, not just how long a person lives, but how they get to live while they are still here.
Since I left the ward, I have thought a lot about how strange it is that people often try to avoid everything that reminds them of death, at the same time as the proximity of death sometimes makes life most clear. There were fewer illusions there than in the world outside, fewer facades, less games, less escape. The body does not allow you to hide behind achievement or status when it begins to give in, and perhaps that is precisely why something more naked and true in a person is given space to emerge.
In the end, life is perhaps about quite simple things. To feel loved. To feel safe. To feel peace in your body. To hold someone's hand, and to be seen before life ends.
In the palliative care unit there was an understanding that some things cannot be rushed without something human being lost along the way. You cannot rush through security. You cannot rush through grief. You cannot mechanically perform presence. A person is never just a body to be handled, but a living being who continues to feel, experience and need love until their last breath.
