Worse Than Death: Suffering, Metal, and Medical Futility

Editor’s Note: the below post was written by one Greg Greenberg, friend of the blog and dedicated musician. We are proud to give such an insightful piece a platform, as it discusses on issues which should bother all denizens of the modern “West”. Death, as metal teaches us, is to be confronted and come to terms with, not avoided.

The Room of the Fatally Ill

Metal is heterogeneous. Its meaning and values are constantly re-negotiated by artist and audience. Within this flux, we can nonetheless identify patterns that trace areas of persistent interest. When dealing with the subject of the sickest of the sick, those standing at death’s door, metal can be a vehicle for co-opting their suffering into a power fantasy in which the body is an abstracted object whose utter defeat can be contrasted with a seat of total power, the image which usually accompanies the body in Western culture. Depending on the artist or listener in question, we can either identify with a desire for unbridled power or whole-heartedly rail against it. This is an arbitrary binary, in no way exhaustive, but it serves as a spring board for contemplating the motivations that spur metal musicians and fans to brood over extremes of illness and death. It is interesting to wonder whether any of this is on behalf of the proverbial patient, or any patient in particular. If we narrow the lens and reduce the conversation to power and death, we can make our way to a room. It is nowhere in particular and endlessly reproduced throughout the world. It is the room of the fatally ill.

The room is full of noise. A constant low-grade disquiet churns just beyond the field of your perception. It is invisible when your focus is engaged, salient when you look for peace. A mechanical hum is punctuated by intermittently shrill alarms. The gentle sigh of artificial lungs, the syncopated stumble of flexible tubes being milked for infusion; the background conversation of concerned professionals all rise up and cohere. Though not always as intrusive as the auditory assault, no less important is the olfactory aspect of this sensory crucible. The smells range from the grotesquely offensive to the aseptic. Sometimes, the offense of the smell derives in large part from how alien it can be. Infected flesh, necrotic flesh is striking both for its foulness and aggressively unique details. Certain bacterial infections will produce a sweet smell, providing enough of a counter-point to really drive home that something has gone very wrong.

For nine and a half years I have walked into and out of this room as one of those concerned professionals. All of us fighting, hard as we can, so our patients can get out of that room. It is in the interest of that exodus that I want to dive into the intersection between metal and extremes of illness. Here, there is a potential limbo where the human form hangs suspended beyond meaningful recovery and yet still within the grasp of life-prolonging technology. Here also, we have the opportunity to think about metal’s potential to empathize with suffering. Metal can likewise seek out fantasies about exerting (or resisting) medicalized power over the bodies of others. Most importantly, there is the chance to promote awareness about end of life issues. Some of the worst human tragedies involve people who have neglected to grapple with these troubling questions. When families are unable to know for certain what a loved one would want, their social fabric can strain to the breaking point under the weight of second-guessing.

Those Overmastered by Their Disease

Out of respect for the power words hold, we would do well to first try and state more plainly what medical futility actually is. A simple definition might be any treatment that prolongs life without being curative, in the context of a terminal condition. This concept was alluded to as far back as Hippocrates, who provided a mandate for his students to “not treat those overmastered by their disease.” The issue of defining the concept is crucial, as an overly simplistic definition readily places the power over life and death in the hands of the medical team; and the absence of a definition introduces ethical and legal ambiguity which can pit a patient’s surrogates at odds with the medical team. This leads to the continuation of patient suffering with no chance for meaningful recovery nor significant quality of life. Although this issue is broader than one country, it is especially poignant in the United States. The aging population coupled with advances in medical science and critical care technologies make this conversation vital, because as of today, there is currently no legally agreed upon consensus definition for medical futility in the US. Intentionally or not, heavy music and its preoccupation with existential extremes dovetails with a discussion that is ongoing and of the utmost importance for curbing suffering.

Most cases of prolonged medically futile care involve families who are unable to reconcile themselves with the explanatory power of the medical model. Grief and denial can amplify pre-existing maladaptive behaviors. Education level and language fluency can alter the ways in which news is received. Commonly, there exists the belief that a total reliance on divinity will produce the most optimal outcome. This belief in particular rests on the notion of submitting to divine will, and includes the sense that removal of life support runs counter to a divine will which values life above all else. You might wonder why we don’t simply abdicate all decision-making power to the medical model. It is for good reason that such an approach is now referred to as medical paternalism, and is often viewed as highly undesirable in contemporary practice. Such total power leads to things like racist forced-sterilization programs. It reduces personhood to quantifiable details which may wholly fail to capture very real socio-cultural needs. Although we may wish to enshrine a patient’s right to take or leave medical advice, through this wish to empower a door can be opened on to a room in which the patient neither lives nor dies.

Genre pioneers Death opened a door into just such a room in tracks like “Suicide Machine” and “Pull the Plug”. In “Suicide Machine”, control and suffering are immediately brought to the fore. The tune explores the powerlessness of the critically ill, and the power of socio-cultural agents who would deny someone the right to die. This can be viewed as an exercise in empathy. It is difficult to determine, however, whether the material might reflect any sense of patient advocacy if it was stripped of anti-authoritarian rage. It’s fair to ask which takes precedent: the tragedy of the patient maintained in stasis by life-support or the tyranny of the unjust application of power. The answer is never fixed, dependent entirely on the empathetic range of artist and consumer. To subordinate the imagery of a trapped patient to a critique of power can, however, be viewed as a disservice to those who are actually trapped.

The Question of Service

The question of service continually arises within healthcare. We attempt to set up all we do in service to the patient, and although it may not be the best point of departure for a musical critique it does have some use as a thought experiment. When Death considers the perspective of those for whom death is prolonged, who is this in service to? There may not be a simple answer, but at this point we can infer that the interests of the critically ill and the use of their image in art may not perfectly overlap. When you are in the room, the reality of the patient is overwhelming and undeniable. In art, the critically ill can be reduced to a mere sign-post showing the way to the application of power. “Pull the Plug”, in contrast, seems decidedly more intent on adopting the voice of the critically ill as a primary concern. In particular, the fluidity of time is raised as days take on the weight of years for a speaker enmeshed in life-giving machinery.

Regardless of whether the critically ill are a primary or secondary concern in the music, the attention of the audience is drawn. In medically futile cases, often the most potent factor that determines the magnitude of suffering is awareness of the issue. “Suicide Machine” also notes how being voiceless can obscure the hellish discomfort of illness for those prone to denial: ‘How easy it is to deny/the pain/of someone else’s/suffering.’ Although pain control is a major aspect of treatment, no regimen is perfect and break-through pain occurs. One of the fascinating aspects of critical care is the ritual inherent in “presenting” a patient to their families. Often, when tubes and bodily waste need maintenance work we usher the family out and only open the door again once the patient looks as pristine as possible.

We clean their mouth; moisturize lips, arranging limbs on pillows just so. This is done to prevent the build-up of oral bacteria and bedsores. It is also done, in part, for the comfort of the family but likewise can obscure for them the harsh realities of devastating illness. These rituals can in some measure contribute to the process of denial that facilitates medical futility, unless counter-balanced by a strong line of communication with the patient’s surrogates. Allowing family members to be present during resuscitation efforts has been shown in medical and nursing literature to remove some of the veil and demonstrate both the ugliness as well as the intensity with which we fight to cheat death. When it is clear that nothing has been held back, it is sometimes easier to be reconciled with palliative care and its focus on symptom relief.

For those of us on the front-lines, it is nightmarish to feel that you are performing aggressive care on someone who can only suffer without hope of returning to functional independence. Moral fatigue can become very real when care-giving appears to be divorced from the possibility of a good outcome. In such situations, it is common to provide a lot of attention and care to the family where it is possible to do so. Sometimes, given time and careful patient education it is possible to help alleviate familial suffering and facilitate acceptance. One of the elements that often make a hard situation harder are the general conceptions of statistical outliers and miracles, those cases where recovery is deemed highly unlikely and yet the patient recovers. Healthcare professionals can convey what is likely to be the case, but we are obviously not clairvoyant. Neither do we arbitrate morality, instead offering patients and families information so that they can decide which treatment option makes best sense for them. There are, however, cases where no amount of patient education will bring about realistic understanding. In the most extreme cases, neurologically devastated patients are given a tube in their throat to breath, a tube in their stomach for feeding and then re-located to a long-term nursing facility.

The Guarantee of Clairvoyance

Just such a case provided the source inspiration for “Tonsil”, a tune written by Philly grindcore maniacs Die, Choking. Full disclosure: Paul Herzog is their vocalist, bassist and likewise the mentor who primarily trained me to be an ICU nurse. That said, “Tonsil” concerns a patient who went in for a routine tonsillectomy and suffered brain death as their ultimate outcome. This was further complicated by the patient’s young age, and their parents’ utter refusal to accept the findings of the medical team. That I’m aware of, their body has been kept alive to this day on life support. Beyond fueling this track, the case also prompted Die, Choking to include in their album release of II a legally informed document that could be utilized as the basis for forming an individualized Do Not Resuscitate directive, or DNR.

Stories circulate of patients with miraculous recoveries, awakening after years of being comatose, and these accounts permeate public consciousness. Although it is likely that the majority of neurological healing concludes somewhere between six to twelve months after injury, it is worth reiterating that we can never provide the guarantee of clairvoyance and only speak to likelihoods. Certainty is a balm we do not always possess to give. Often, family members wish to pursue aggressive care in terminal cases out of a fear that recovery is just one intervention away. If nothing is held back, they reason that they will not be held responsible for death and will be free from the pain of guilt. Tragedy permeates these situations, as the desire to “do right” can translate into profound suffering for everyone involved.

Much of that sense of tragedy as experienced by family members, however, is borne out of a prolonged sense of powerlessness. Even the aggressive pursuance of further intervention in terminal cases still does place the ultimate responsibility of cheating death on the shoulders of the healthcare providers, or perhaps some sort of divinity, as mentioned above. But this is often seen as a choice between a series of painful question marks or a horribly abrupt full stop. The ugly reality and overwhelming emotional weight of the situation makes for no easy answers on the part of the patient or their family members.

Swedish progressive death metal band Opeth are no strangers to tackling the tragic reality of death across their discography, but “Ghost of Perdition” in particular offers a view of just how difficult it is for family members to truly reconcile the situation at hand with the intense emotional pain it causes. The song’s narrator discusses in vivid detail the image of seeing his mother in the grips of terminal illness; describing her initially as ‘ghost of Mother’ and subsequently as ‘ghost on mother’s bed’ as she increasingly succumbs to what ails her.

The sheer powerlessness experienced by both mother and son remains the focal point of the song; the mother helpless against her illness as it saps the life from her, and the son unable to do anything but merely watch as any attempts to prolong her life end up slowly and painfully depriving her of it anyways. In a textbook Opeth twist, the son ends up contemplating ending her life himself to end her suffering; after witnessing her transformation into a shell of what she once was, the son imagines whether her death would provide any respite (‘Holding her down/Channeling darkness/Hemlock for the Gods/Fading resistance/Draining the weakness/Penetrating inner light’). Finally, the song ends with him rationalizing to himself whether or not it would be justified to let her die over leaving her in the prolonged suffering of the state she is otherwise in.

As horrific as it sounds, the son feels as if directly causing his mother’s death is the only way for him to exert any sort of agency in this situation. Even if it entails defying any sort of preexisting morals he may have had, it remains the only possible action that will lead to an outcome that anyone can be fully certain of, as opposed to yet another series of likelihoods. Opeth therefore illustrate the tragic and futile nature of the scenario at hand with this relatively extreme example of their own, where the son would end up feeling responsible for either her prolonged suffering or her death itself. And therein lies the twisted irony of it all; despite the powerlessness he may be feeling, the emotional burden of responsibility that accompanies either option will still fall on his own shoulders.

Medical futility is best curbed through education and awareness. Heavy music’s preoccupations with power and suffering offer an opportunity to begin this sort of dialogue, and a chance to interrogate ourselves when we feel outraged on someone else’s behalf. The music also offers a medium through which to process overwhelming emotional experiences. Art can be crucial for the grieving process, and there are some traumas that elude other therapeutic modes. Above all, the simplest and most powerful thing one can do to lessen the trauma of death is to explicitly tell your loved ones what you want for yourself, what your definitions are for quality of life.

The initial questions one must answer are straight forward: would you want to live out your life with a tracheostomy, a permanent tube implanted at the throat to permit breathing? At larger sizes such tubes prevent speech, and they require frequent (often uncomfortable) suctioning to clear them of mucous. Would you wish to live with a permanent feeding tube? Most typically, the need for this is paired with total loss of the ability to safely consume food orally. These are by no means the only points of consideration, but they are important starting points. From the vantage of healthcare workers, it is for us to provide information and options for the patient / family, and for them to determine which of these best suits them. Communicating a well-informed opinion about your end of life preferences to your loved ones will not guarantee a complete liberation from suffering, but providing your voice will stave off the silent vacuum of uncertainty that can prolong life without offering cure.

Comments

Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.






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