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Matters of Life and Death

Be kind to those who don't want to let go.

Death always comes too early or too late.

There have been a number of high-profile cases involving end-of-life care, and the “right-to-die” (or to live). Medical professionals are bound in their duty by their training and the law, and must do what is in the patient’s best interests. Unfortunately the relatives of the patient are not always willing to accept the medical verdict, and we run into conflict. When this is discussed in the media, the conversation tends to focus on science vs. religion, emotion vs. reason; portraying distressed relatives as selfish and delusional. Taking a detached and dispassionate stance, we look upon the situation “rationally” and side with the facts, but we’re not reviewing all of the evidence.

At this stage in human development, we’ve not yet learned to put a value on a feeling, or to quantify an instinct. We might say, therefore, that we should stick to what we do know, and that emotion should play no part in decision-making. And yet, emotion pervades our entire existence.

In the UK, the law dictates that medical decisions are to be made in the patient’s interests, even if that contradicts the wishes of their carers. It’s important that we do have these rules, because the wishes of relatives and friends may not have a positive impact on treatment, and they can sometimes be downright harmful. This is an obvious trigger for conflict, especially regarding end-of-life decisions. As a result, these cases sometimes lead to lengthy court battles, often in the public eye.

Most relatives are not medically qualified, and this affects their ability to acknowledge the outcome of these decisions. Some may turn to alternative sources of information for education and comfort, which has mixed results. Plenty will learn and come to accept the diagnosis, but others will find allies and information that encourage them to fight. There are numerous cases in which the family’s wishes have led to legal rulings going against medical advice (Charlie Gard, Terri Schiavo, Jahi McMath, to name a few), and yet ultimately all of these cases end in the same way: we can delay death, but we cannot evade it.

But the search for more information is not always driven by a distrust of doctors. Frequently relatives are given incomplete and/or contradictory explanations, or they have not fully comprehended what they’ve been told. A search for answers can lead down avenues that give all the wrong information. Particularly, proponents of religion, untested treatments, and alternative medicine tend not only to give answers that sound meaningful; but they also offer the comfort and patience that regular medicine does not. It’s easy to see why some people are drawn to these sources.

Within the courtroom, both sides of an argument are presented, no matter how baseless or weak the argument may be. Scientific evidence carries a lot of weight in the real world (try arguing against the laws of thermodynamics and see how far you get), but in the courtroom, it is up for debate alongside the wishes, beliefs, and feelings of the opposing party. It may seem like false balance to a rational thinker, and it is certainly comparing apples with oranges. At the centre of all this is a judge who will need to evaluate which of the threads of this complex tapestry must be extracted to benefit the patient. It is not easy, and there is guaranteed to be frustration and heartbreak, whatever their conclusion.

But we should not ever have to arrive at this stage. We do end up here because of misunderstandings and poor communication, not just at the individual level, but within Western society as a whole. We are taught that life is to be preserved at all costs – and it’s certainly not a bad thing to hold human life in such high regard. But when it comes to the end of life, it means that we don’t want to let go. If we have incomplete knowledge in addition to this instinctive belief, it is natural to think that there may still be hope. If the situation hasn’t been clearly spelled out for whatever reason, the possibility of death is easier to deny.

The medical profession is geared towards saving and protecting lives, but recently we have given more consideration to improving death as well as improving life. With advances in medical technology and treatments, we can save and prolong more and more lives, incorporating a large number of lives that are on the edges of viability: extremely premature babies, the very elderly, those with terminal illnesses and severe disabilities. When the border between life and death is fuzzy, there comes a time when, in some cases, it is realised that no more can be done.

In the past, death used to be clear-cut; a person would become old or sick, and they would die. Those lives on the periphery of existence just wouldn’t have made it—we didn’t have the medical capability to keep them alive. Death was easier to accept and understand, and it came and went with swift ruthlessness. Nowadays, we are more able to view the full process of dying, but because we see in front of us a living, breathing person, we may refuse to accept that it’s happening. Our instinct is to want to save a life, but the doctors say that intervention is futile. It’s hard to reconcile that with what is right in front of one’s face, and it can feel like the doctors are just “giving up.” There is a sense of injustice, that is often levelled at the medical team, but it is actually the fault of chance, of sheer bad luck, of the nature of life and death itself.

Something that is not commonly known about those at the end of life is that the patient can still seem to behave in ways that suggest awareness & cognisance of their situation. People in a persistent vegetative state, or even those that are brain-dead, may still move, make sounds, and appear to indicate that they understand commands. The aforementioned examples (described below) are just three of many that demonstrate such phenomena. In each case, there is a sound medical explanation as to why the patient's body did what it did, but relatives have (understandably) misinterpreted the actions of the patient as signs of meaningful life:

Terri Schiavo was a woman in her late twenties who suffered a cardiac arrest at her home in 1990. As a result of the lack of oxygen to her brain, she suffered extensive and irreversible brain damage. She was able to breathe unassisted and eat through a feeding tube, but that’s about all she was capable of. After approximately one year of various therapies, it was determined that she was in a persistent vegetative state with no prospect of recovery. Her husband asked for the feeding tube to be removed so that she could die a natural and peaceful death. Her parents objected and the case was in and out of the courts for fourteen years, until the feeding tube was finally removed in 2005. A post-mortem confirmed that Terri’s brain was severely atrophied, with almost every part needed for consciousness gone. The video footage here [link] is condensed from many hours of tape, and the movements made by Ms. Schiavo are random and the result of brain-stem functions, yet they make her seem as if she is interacting with her environment. Sadly, it was futile to prolong her life for those additional fourteen years, because it is not possible that she had any meaningful life, and it extended the misery of her family. But the videotape is compelling, and it is easy to see why her parents desperately wanted her to be alive and aware.

Jahi McMath was a thirteen-year-old girl who attended hospital in 2013 for surgery on her throat to alleviate sleep apnea. While in recovery from the surgery, she suffered massive blood loss from her nose and mouth, and she entered cardiac arrest. Doctors attempted to save her, but after they had got her breathing and heart rate stabilised (via life support), tests determined that she was brain-dead. Her parents did not want to accept the verdict as her heart was still beating. The story took a bizarre turn after the body was released to the coroner, as Jahi’s parents contested the ruling that she was legally dead. This prevented a full autopsy from being performed, and Jahi’s body was handed over to the family, who then moved from California to New Jersey—where there is a state law allowing brain-dead patients to be declared living if their family objects for religious reasons. Jahi’s body is currently hooked up to a ventilator, even though the death certificate still stands and she will never recover. Here is some video footage [link] of Jahi’s feet apparently moving in response to her mother's commands. It has been suggested that this and other videos have been faked to give the appearance that Jahi is moving her own limbs voluntarily. Spinal movements are possible in brain-dead patients, and could be part of the explanation in this case.

Charlie Gard’s recent, tragic case drew international attention, but it could not change the course of his illness. Understandably, his parents were heartbroken and did not want to lose their son. In all of his photos in the press, Charlie looked like an ordinary, sleeping child. However, his peaceful exterior masked a terrible genetic illness that was ravaging his body and brain. Mitochondrial depletion syndrome caused his cells to disintegrate, destroying his muscles and large parts of his brain. In his final days, scans revealed the devastating effects of the disease, and Great Ormond Street clinicians stated that while Charlie could not interact with the world, he may have experienced pain as a result of his treatment, and was not able to develop as a normal child due to his brain not receiving external stimulation from sound and light. The court battle went on for almost all of Charlie’s short life, and even though his parents will have suffered terribly at the thought of their child dying, the protracted court case ultimately drew out the suffering of Charlie, his family, and the hospital staff.

Even the most logical thinker can be fooled by the slightest inkling that a severely brain damaged patient just might not be, and that goes for people who have never even met the patient, let alone those who are closest to them. Perhaps if the general public knew more about these disturbing yet fascinating occurrences, we might see death as more of a process than a destination, and we might even accept it as part of life's journey. Doctors say that the final stages of dying are actually rather peaceful, and pleasant, for those experiencing it. We might have no idea of the internal experience of a patient unable to communicate with us, yet we assume that the best thing for them is to continue their uncertain life, rather than move to a certain, and natural, end. We must also consider the possibility that a patient in this state could be in incredible pain and/or misery, and that we could be doing more harm to them by extending their life beyond its natural limit.

The conversations that we have around death follow a carefully orchestrated pattern. There are accepted ways of thinking and speaking about death, and these traditions are inadequate for the types of death we experience today. As well as unthinkingly fearing and avoiding death, we unquestioningly believe our mythology (both religious and secular) about what death actually entails. These narrow rules deny us the opportunity to question and learn about death, and they silence relatives who don’t want to follow the traditions governing how we should “do” death.

With regard to grief, we focus mainly on the aftermath of a death, as if all passings are unexpected events. But better health screening and treatment means that we may be able to anticipate a death months, or even years, in advance. Having a fighting spirit in these scenarios is lauded, as if all brushes with illness are battles to be fought against the enemy of death. This brings the focus on to the dying party to stave off death for as long as possible, to soldier on to the end through the pain, to be “brave.” There is no room to think about the inevitable, to come to terms with the fact that the end is coming. We do not talk about death, particularly around the dying. It is one of our greatest taboos, yet it is a natural consequence of being alive. We need to speak frankly and compassionately about death, in part to alleviate the fear, but also to understand and take ownership of it.

A protracted death means that grieving must begin sooner, during life. We used to grieve only for the loss after we had experienced it, but now we may need to grieve for a living person, and they themselves may be grieving too. Or they may be fearful, alone, or a great number of other things. Pretending that death is a surprise, we build walls to block out reality, and in the process we deny closure and tranquility to ourselves and the dying. We feel that we must uphold our pretence to conform to an outdated tradition, not just because it's what we always do, but because we have nowhere else to turn.

This is where empathy and emotional concerns come in. Within the hospital setting, death is a clinical matter, dealt with by scientific and medical means. But death means a thousand different things and more to the ordinary human, and we must bear that in mind. Relatives, and the patient themselves, might object to a medical decision for personal, religious or moral reasons. We might say that these concerns are irrelevant (and many commentators do), but how does this help the situation? We already know the facts; repeating them over and over doesn't make them any more palatable. Our own personal beliefs can provide a refuge from one of the greatest fears of all.

Speaking of religion, we find many examples where belief has obstructed the law. This will always be a point of contention, partly because many feel that church and state should be completely separate, and partly because religion is often oppositional to the best and advised medical care. However, simply standing by and labelling it as archaic and irrelevant sets the wrong tone. People of faith hold a deep connection to their beliefs; to shame them and refuse to engage with them (especially at such a delicate time) comes across as an attack on their identity, and isolates them further. During difficult times like these, the family’s only source of support is the religious community. Irrespective of the recommendations of the doctors, faith leaders will stand by the religion’s teachings, and side with the family by default. The doctors will stand by their findings, and there is no common ground. We need to speak with these families on their terms, and understand why they feel the way that they do. We cannot bring anyone around without empathy in the first instance.

This is not unique to those with faith. Atheist and secular families may still struggle to deal with death. No-one wants a loved one to die, and the wish for them to still exist often overrules the wish for them to be at peace and free from the constraints of their sick body. Hope is a strong emotion, one that our society prizes. It’s natural to have hope, to wish for a miracle; even if you are not religious and do not pray. The healthiest (but not the easiest, or least painful) option is to accept the diagnosis, process the grief, enjoy the last moments with the relative, and finally adjust to life without them. But our natural instinct and society’s pressures get in the way of this. Anticipating a death well is a process that must be learned, and yet relatives are often left to deal with this alone; while bystanders criticise and proffer their unsolicited opinions.

Intense emotional responses to trauma are natural and expected. Our base emotions can impede decision-making and acceptance of the truth – but nobody makes any decision completely free from emotion. Emotion shapes our whole lives – it dictates who we love, what we get out of bed for each morning, and deep down, who we are as a person. Of course, we all make rational decisions, i.e. to have a job, own a home, to not commit crime (or the opposite, in all three cases), but our overall goal is one of passion and pleasure. We choose what makes us feel good. Emotions can be difficult to control, and yet our society favours stoicism, resulting in public and private battles with our innermost feelings. If an end-of-life case makes the headlines, the family’s pain becomes public property; we then judge them on how well they conform to society’s rituals, and offer them feedback via our approval or denunciation.

With a sympathetic public and intrusive media backing the grieving family, it’s only a matter of time before public figures weigh in on such a case. These spokespeople, and the curious yet unhelpful public, have their own agendas, biases and uninformed views to share – on all sides of the discussion. It must be exhausting to fight not only for a sick relative's life, but also against the sea of voices condemning and scrutinising you.

By now, the family is well-supported in their belief that the doctors are wrong, and that their relative should be given another chance. This can make life very difficult for the medical team, as we saw recently with the protesters outside Great Ormond Street Hospital (related to the Charlie Gard case), and journalists intruding into the private lives of anyone connected to the story. But the family will be the hardest-hit of all. Well-wishers and enablers cannot change the course of nature. Death is still imminent. Yet the false hope galvanised by campaigners and media attention is harmful. It prolongs the family’s pain, and that of the patient.

It has been suggested that the use of a super-injunction would be suitable for cases of this type. In the UK, this means a court-imposed ban on media reporting of a case, on the grounds of maintaining the privacy of those involved, or even that the case exists at all. They have mainly been used in the past to block reporting of celebrity extra-marital affairs; however, their use for such a sensitive issue as end-of-life cases would not only be for the public benefit, but that of the family – although they may not see it that way. While it would be helpful to talk about the concept of death more openly, dragging an individual family through the courts and newspapers is in no-one’s interest, even if the publicity is initially welcomed.

As a society, we need to rethink how we see death, and the only way we can start this analysis is to talk about it. We defer to the cold, hard, clinical facts, knowing that death is inevitable and that there's no point in challenging it. And yet who is it that holds this view? The living – and often those who are in good health themselves. This is where the “detached and dispassionate stance” comes back to bite us: try being objective when it is your own life on the line. As well as educating ourselves on the actual meaning of death, we would do well to learn some empathy. A desperate situation can be assessed as objectively bad, but the actions of those involved can only be properly understood by seeing the world through their eyes.

Death contains a lot of unknowns for all of us, and yet we will each have to face it one day. This fact isn't talked about in polite society, and the death we come to expect isn't like the reality as a result. Death is messy and unpredictable, and we have shielded ourselves from this reality for decades. In former societies with limited healthcare, death was more visible, and embraced reluctantly, yet with acceptance. Today, in order to find comfort in such a desperate situation, our options are limited: the holy death of religious myths and centuries-old rituals, or acceptance of the harsh medical facts. But the actual experience is both in the centre of this spectrum, and completely outside of it.

At the heart of this is an individual, who has the biggest stake in this game. We might wish to protect them, to conceal the truth from them; or we may be too nervous to raise the subject. Leaving them out of the most important decision of their lives is condescending and cruel, yet convention dictates that we must not mention death around them. If the individual cannot make their own decisions, they rely on us to do the right thing for them. Sometimes the artificial extension of life is not the right thing to do, and we need to have some difficult conversations about this. A good place to start would be in the doctor’s office, with a more compassionate approach to delivering bad news. Patients and relatives need time to come to terms with unpleasant truths, and may require guidance to reach the appropriate decisions for the end of life. At such an emotional time, all the facts in the world cannot help. We must empathise and communicate in a way that is appropriate to each individual case.

Viewing all the facets of this problem at once, we see that death is complicated. Each fact, belief, or argument by itself cannot provide the answer. We all know that we will die someday, but that doesn’t mean that we go quietly, without a fuss. A purely spiritual or emotional response to death can lead to cruel and futile medical treatments under the guise of “saving” life at any cost. Ignoring people’s personal and cultural values is cold and heartless at an already difficult time. Many people will see themselves on one side of the fence or the other: you either choose medical certainties, or you prioritise a religious, pro-life stance. But it doesn’t have to be this way. There is room to accept the evidence and have a “good” death in line with the beliefs of the patient and carers. But we need to engage in a broader conversation about death, in which we can learn more about the physical process of dying, and challenge and reassess (or reaffirm) our morals. At the very least, we can learn to see things through another person’s eyes, and empathise and counsel them through such an important and daunting time. With understanding comes growth, and the opportunity to reach consensus. It will be hard; saying goodbye forever is a heart-wrenching decision to be forced to commit to—but if we can help people to get there by themselves, we can alleviate some of the pain.

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