Last orders: pain relief at the end of life
Why we need to re-think what pain is and how drugs can help
Whether we’ve experienced it directly or not, we probably have a rudimentary understanding of the types of drugs used at the end-of-life. Perhaps a combination of carefully managed, injected doses of analgesics like morphine, or antiemetics for treating nausea. In the UK, this is typically true. But the way we administer and dispense pain relief at the end of life has changed significantly and symbolically since the 1980s, when the National Health Service (NHS) began to withdraw the use of more traditional treatments, such as the Brompton Cocktail. The Brompton cocktail represented a powerful expression of what we can consider a particular art of dying. The cocktail was a poetic elixir of pain-relief especially tailored to the patient, created by medical staff during the last days or months of life, that combined an effective medical treatment with a personalised, humanistic approach to palliative care.
Devised in the late 19th century, the Brompton cocktail underwent various iterations, but largely contained a mix of morphine, heroin, cocaine, chlorpromazine (for nausea) with a final, crucial element of alcohol. The mixture was dispensed to treat those in extreme pain with advanced diseases, tailored to the individual patient by their preference for booze — be it whisky, gin or some other spirit. By the mid 20th century, it had evolved via its adoption at the Royal Brompton Hospital (where it latterly took its name) to be a refined mixture of morphine, cocaine, alcohol and syrup, under the technical name of Haustus E. (Haustus meaning a draught or potion, and E. for elixir).
This approach to pain relief — analgesics wrapped around socially acceptable rituals like drinking — can be best seen with the last interview with the playwright Dennis Potter. During the South Bank show with Melvyn Bragg, Potter drank oral morphine alongside champagne during the interview — his last — before his death from cancer in 1994. In this case, it is powerful to watch the morphine — a transparent, water-like medicine almost smuggled in a whisky flask — act as a third participant alongside Bragg and Potter, in a riveting conversation about life, work and death. Bragg is at first taken aback at its necessity and continual emergence from the side table, but soon it becomes ordinary and its presence, alongside champagne and cigarettes asks us to accept pain relief as a significant part of the dying experience.
The use of pain relief represents a tangible struggle for balance between comfort and lucidity at the end of life.
The Brompton cocktail however, did not remain a positively viewed element of the dying process. Studies in Canada revealed that a solitary solution of morphine was as effective in providing pain relief as this combination of drugs in a personalised mixture. A single dose of morphine was easy to administer, and it helped accelerate the demise of the cocktail, under the auspices of efficiency. The subsequent removal of the cocktail, a symbolic as much as practical tonic, symbolises our most modern pharmaceutical death. We understand what is the most effective pain relief to administer, and place this second to delivering the most personalised care for the patient.
The use of pain relief represents a tangible struggle for balance between comfort and lucidity at the end of life. The dispensing and administering of pain relief through custom concoctions is a lost art and the systematic coding of pain is in a tangible example of our modern ‘over-medicalised’ death.
Pain relief with drugs can often represent the uncomfortable reality of end-of-life care. By those uninitiated to the complexities of drug administration, the appearance of a syringe driver — a drug-delivery apparatus — is often regarded as being the thing responsible for the death of a patient. A syringe driver is used to regulate pain relief more effectively than manual injections delivered by a nurse, who cannot always administer at all hours. They are often brought to patients because they are naturally near the end of their life and require high levels of continuous pain relief, and so their introduction should represent a source of reassurance and control, not fear and loss of autonomy. However, the late appearance of strong drugs like morphine, does sometimes bring about questions of ethics and morality that previously remained hidden. The prescribing and delivery of morphine to a patient can sometimes reveal the complex, grey area of palliative sedation: whereby a large dose of pain relief administered by a clinician, may or may not hasten the death of the patient (usually through respiratory arrest). Thankfully, studies show that drugs like morphine rarely kill the patient. It is almost always the disease. In fact, many people are able to absorb incredible amounts of morphine when suffering from devastating disease.
At its best, palliative care represents one of the most holistic approaches in medicine.
However, we shouldn’t be too harsh on those who tend to the dying, for any move towards a standardised approach to drug delivery, who operate in the grey zone between life and death. At its best, palliative care represents one of the most holistic approaches in medicine. This is in no small part due to the pioneering work of Cicely Saunders. Around 1959, Cicely Saunders, an Anglican nurse and social worker, devised the concept of total pain. She conceived of a multidimensional understanding of what happens to a dying patient — most often someone with cancer — when they experience pain. A terminal cancer will provide physical pain, but Saunders realised that their experience of it was contextualised with other factors: their mood, their social needs, their spiritual or religious feelings and their own personality.
The reality of our inevitable death pains us deeply, and it is expressed in many various ways.
A patient’s total pain naturally a complicated thing to understand. Its acknowledgement quickly reveals some of the more fundamental aspects of the dying process. Namely, that we all must come to terms with the idea that we will one day die. Our denial or acceptance of it, can directly affect how we cope with the various symptoms of pain in our last stages of life. As the anthropologist Ernest Becker remarked, “the idea of death, the fear of it, drives the human animal like nothing else.” We are driven by our fear of death. We try and avoid its gaze, build coping mechanisms to avert the truth that we will succumb, like all things, in the end. The reality of our inevitable death pains us deeply, and it is expressed in many various ways. We can get upset or angry, we can isolate ourselves in despair, we can try and seek solace in symbolic immortality like heaven or a cosmic eternity. And so, our approach to treating physical pain is insufficient when we recognise the need to relieve this multidimensional pain of emotion, sociology and psychology.
It is somewhat incredible to discover then, that traditional pain relief has been proven to be effective at treating these more existential problems, as much as physical pain. In a series of studies by the University of British Columbia, researchers discovered that Tylenol was effective at reducing existential dread. In a randomised controlled trial, participants were asked to write about what happens to their bodies when they die. Another group was asked to write about dental pain:
All the participants were then asked to read an arrest report about a prostitute, and to set the amount for bail.
Just as expected, the control group that wrote about dental pain — who weren’t made to feel an existentialist threat — gave relatively low bail amounts, only about $300. They didn’t feel the need to assert their values.
On the other hand, the participants who wrote about their own death and were given a sugar pill gave over $400 for bail, in line with previous studies. They responded to the threat on life’s meaning and order by affirming their basic values, perhaps as a coping mechanism.
But, the participants in this group who took Tylenol were not nearly as harsh in setting bail. These results suggest that their existential suffering was ‘treated’ by the headache drug.
A second study confirmed these results using video clips. People who watched a surreal video by director David Lynch and took the sugar pill judged a group of rioters following a hockey game most harshly, while those who watched the video and took Tylenol were more lenient.
The study concluded that Tylenol — an over the counter medication — was as effective at treating a headache, as it was in reducing the dread of death. They proposed it blocked signaling in the brain that affected psychological pain, much in the same way as it did for physical pain.
This method of presenting scenarios of death and dying to people, and subsequently asking them to make valued judgments, is a well-documented method to establish the notion of death denial, through our adherence to promoting concrete social values (such as justice, in the case of prostitution arrest reports). The psychologists Sheldon Solomon, Jeff Greenberg and Tom Pyszczynski conducted similar experiments for their book, The Worm at the Core, to quite spectacular effect. Innovative approaches to drugs at the end of life are even being observed again with the slow reintroduction of psychedelics into clinical settings for research purposes. Patients who suffer from existential dread during their last years and months have been offered psilocybin (LSD) during controlled experiences, to help relieve them of their suffering.
The question we can ask then is: if proven safe for most people, what limits these drugs from being used in a wider setting? What possible reason — other than adherence to the existing laws — could the legal system give? What is stopping us from utilising a non-addictive drug such as LSD — that can help alleviate suffering and which can be used in conjunction with other existing therapies — to help treat the total pain of a dying person?
We often think of innovation in healthcare stemming from technological advances, but what about innovative shifts in cultural acceptance? What would be a radical departure from the existing norms? It has been observed in recent years how dying people actually tend to their needs. The illegal marketplace Silk Road (which was under its closure in 2013 one of the most well-known aspects of the so-called Dark Web, provided access to otherwise highly illegal substances which some people sought to utilise at the end of their live. Scores of people who felt the need to prematurely end their own life (a practice known as assisted suicide) used the black market to purchase Nembutal, a powerful anesthetic. When it was shut down by the FBI, those who lost access to the marketplace would have to resort to more riskier methods or ask family members or other people close to them, to buy the drugs, sadly described in a phenomenon called ‘death tourism’.
Rather than people illegally obtaining drugs for their personal use at the end of life, what alternatives could we make available? What if the laws could be relaxed for those in the last year of their life, or special dispensations made to treat the complex reality of pain? What does the possibilities hold for pain relief when we recognise, understand and can even prove that pain is more than simply physical, and in fact is unique to every dying person. What would a 21st century Brompton cocktail look like?