Progress involves improving on the past. Once, we used leeches to suck out an excess of cancer-causing humours, or just blamed them on the wrath of the gods. In modern hospitals, we now image such tumours deep within the body, target them with synthetic chemicals or narrow beams of radiation, or excise them with clinical precision. As if the mass was its own entity, we can ignore the rest of the body and concentrate precisely the problem at hand. If all this fails, we have teams to ensure that dying is convenient and minimally disturbing to the routines of others.
A good friend died recently of a rare and aggressive cancer. From diagnosis, he had several months of generally positive life through a difficult time, maintaining a sense of humour, a rational view of the world and loyalty to friends. He had always been good at seeing things that others did not without being arrogant or self-opinionated. The sort of friend you felt would stick by you through difficult times (and did). For the purpose of this discussion, we will call him ‘Matt’.
Problem-based medicine
Matt’s cancer was treated in the modern way. A team specialised in scanning people scanned him as schedules allowed over a period of weeks, establishing the extent of spread. A team specialised in irradiating cancers irradiated a large part of his body to shrink the cancer (which helped). Another group specialised in poisoning cancerous cells assessed whether such poisons would be of benefit, and decided they would not. Another arranged devices to help him walk, as the cancer had stopped him doing so. Someone somewhere may have been tasked with dietary advice, but that did not seem to happen.
Cancer is a complex disease, influenced by metabolism, genetics, immune status and general well-being. These are also interconnected. The most financially profitable approaches involve killing cancer cells with chemicals or radiation and, more recently, harnessing the immune potential of the body’s T-cells (‘cellular immunity’), those that kill cells and pathogens that they identify as abnormal. The body’s own T-cell response needs certain micronutrients, such as vitamins and trace metals, that modern lifestyles and diets often cause to be insufficient. They are cheap (poorly profitable) and so the science around them attracts less sponsorship.
It was clear early on that Matt’s care would be ‘palliative’, which means the cancer could be shrunk a little but not stopped. Due to its placement and extent, it could not be excised. Remaining there in an otherwise unchanged environment, it would come back, probably fairly quickly, and that would be the end. The scanning team scanned occasionally to see what was happening, but otherwise the clinical teams had fulfilled their protocols. Cutting-edge cancer therapy had cut its edge, and there was nothing more to be done.
When the problem becomes insoluble
Matt was particularly fortunate in having neighbours and nearby friends who treated him as he would them. Being human, those who cleaned his house got to know him well, recognising his qualities. One night, he had a fall and was transferred to the hospital where most of his previous management had taken place. As he was designated not-for-resuscitation (NFR), he was placed under the palliative care team, deemed best for his insoluble condition.
To understand modern institutional palliative care, it is best to explain what happened next. Matt was placed in a room on the main corridor near the nurses’ desk. The door was left ajar so he could be observed. This room was painted grey, had no windows and no pictures on the wall. A couple of chairs, some fixtures for oxygen, a basin and antiseptic dispenser and a cupboard. Day and night became irrelevant, as in any windowless cell.
After some days, Matt was said to be non-responsive and “may not have long”, which surprised us as he had been quite stable and well-oriented shortly before. When friends visited, he could talk and interact and appreciated visitors, thanking them for coming. But later he would be reported to have lapsed into unresponsiveness again. This seemed confusing to those who knew him.
When I visited the first time, he was lying naked on the bed (the blanket was too small to cover him fully anyway) and wet, with an oxygen cannula dispensing oxygen into the air rather than his nose. He woke up when this was placed to serve its function and could respond. Over multiple visits, a nurse came in only with a syringe to inject what turned out to be his palliative care: ampoules of morphine and midazolam. Morphine dulls pain and mind and suppresses breathing; midazolam reduces the ability to respond, so that the recipient stops crying out for help when he wets himself, is embarrassed about being naked or is thirsty.
When staff were requested to withhold the midazolam, Matt was able to converse with others, express his needs and answer questions. He was very clear, not unexpectedly, that he would prefer to be home. Each time I returned, he was lying as I first found him, naked, wet and calling for help, or dosed out with chemicals. Then the midazolam would be injected again after visitors left. Food was limited as that required someone to sit with a spoon and friends could not always be there. The hospital was not staffed for this – or protocols did not allow it.
Similar treatment is used by inhumane jailors to humiliate prisoners if they want to break them down psychologically. Being busy ensuring that the digital documentation was up to date, the nurses did not have time to do much more. The institution is designed this way. This is not about how certain individuals treated another, it is about how all of us can treat others when our institution organises and encourages us to do so.
Lone individuals seldom act in a systematically abusive and callous way towards a stranger. When they do, we call them sociopaths, sick or criminals (of the worst sort). But an institution, made up of individuals, can do this easily. We drown the call of conscience and empathy in groupthink and routines. It is just the way the machine works, whether its trainloads from the ghetto, corralled refugees or forgotten faces locked in a nursing home. We receive permission to devalue others, not realising they are ourselves. In Western medicine it has allowed us to separate the tumour from the person, then where necessary kill the person before death, making it all so much less traumatic or intrusive on our own routines.
A human leaving
Thanks to neighbours and friends who cared, Matt was returned home on a stretcher, with visits by a good community health team and support from friends. He needed no medication, as he was not in much pain, just sometimes distressed as a man would be when unable to go to the toilet himself. He enjoyed music, remembered and chatted about old times and mutual friends, and enjoyed his favourite foods, though in small quantities before tiredness set in. Having not eaten much during two weeks in hospital, his body’s reserves were exhausted.
The midazolam and morphine, it turned out, had mainly served to help the institution function, preventing Matt from interrupting routine or requiring human contact. At home, human contact, music, sunlight through a window and conversation were natural rather than an imposition. This might be a revelation to some, especially in this age when we shut the elderly or dying away from their families for months at a time to ‘protect’ them from some virus or other. It suggests that a person with a foreseeable death may still be human, and that ‘DNR’ (do not resuscitate) printed on the clinical notes does not really change that status. The institution may dehumanise the people paid to care, but not the intended subjects of that care. They retain their intrinsic value.
Matt died after a few days at home, not naked to passersby in a grey windowless room on urine-soaked plasticised sheets, but at home surrounded by friends. He was still a person, a wonderful one, despite all that progress could achieve.
Dr. David Bell is a clinical and public health physician with a PhD in population health and background in internal medicine, modelling and epidemiology of infectious disease. Previously, he was Director of the Global Health Technologies at Intellectual Ventures Global Good Fund in the USA, Programme Head for Malaria and Acute Febrile Disease at FIND in Geneva, and coordinating malaria diagnostics strategy with the World Health Organisation. He is a Senior Scholar at the Brownstone Institute.
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Christ.
Where do I begin.
Ubi ego incipiiam.
I’ve been well aware of this for over 30 years. There is nothing new under the sun.
Weary wears the head which wears the crown.
May the perps rot in hell, forever.
This is no surprise to me. In my professional life working in a private capacity with people at the end of their lives, I always tell families “if at all possible get your loved one out of hospital”.
Especially for the elderly they are death wards.
No care, no food, no hydration, no dignity, no love or compassion.
I have had families say to me “I am not letting them discharge until they are improved”.
To which my response is “they have no hope of improvement until they are discharged “.
And if you haven’t, get your Lasting Powers of Attorney in place both for Finance and Property and Health and Welfare. Whatever your age get them in place. Otherwise faceless bureaucrats will make life and death decisions about you without consulting the people who love you.
Absolutely. My advice to my elderly Dad before he died, ‘never go to the hospital for any length of time, you will be murdered there.’ I know of one case where they starved a 90 yr old man to death (my 2nd cousin’s grandfather). And then we have the drugs……
The midazolam and morphine, it turned out, had mainly served to help the institution function, preventing Matt from interrupting routine or requiring human contact. At home, human contact, music, sunlight through a window and conversation were natural rather than an imposition
https://m.facebook.com/photo.php?fbid=934357638078283&set=a.287871856060201&type=3
This should brighten everyone’s evening.
The deviant Harriet Harman is now demanding on behalf of the rest of the cowardly Westminster mob that MP’s should be allowed
to work from homego home to watch Daytime telly because of the threats from a few muzzies which she and the rest of the H of C promoted and which they are now too feared to deal with.Something tells me we are being played here and big time.
https://twitter.com/lambruscov/status/1739785591540035741/mediaViewer?currentTweet=1739785591540035741¤tTweetUser=lambruscov
This isn’t pleasant viewing.
Well said
The hospice movement was in full flight back when I was a medical student – and I’ve now been retired 15 years. I personally booked Dame Cicely Saunders to speak at the hospital, as a GP did a course at St Joseph’s Hospice in London, and was involved when volunteers organised a hospice in my town.
There is as little excuse for this “abandon hope all ye who enter here” attitude now as there is for routinely bleeding patients with leeches on admission.
That’s true whether “Matt” was mistreated in America or here in GB.
In my time spent in hospitals in various roles, I witnessed the change in the basics of nursing, brought on in part by creating a degree course when this was not universally needed, with the loss in many cases of basic human care such as hydration, nutrition and cleanliness of the patient. I have witnessed this with family members as well as members of the public, something that was never part of my early hospital experiences in the military and civilian hospitals, coinciding with the days of matrons. The article brought home to me the incident with my mother, who had suffered a dense CVA, and despite some very detailed information the family gave, she was subject to certain sedating agents that had previously proved very detrimental, such that at one stage we were advised she was close to death, until we recognised that the very drug we had mentioned as problematic, had been administered. I have never understood the simultaneous use of opioids and benzodiazepines given the propensity of both for respiratory depression and for people who were inactive with reduced tidal volumes. As a consequence we couldn’t wait to get her home, and had to fight for this but, I would like to think that we gave her back some of her dignity and made her remaining time a more positive experience, away from the dehumanising effect of a typical hospital environment. The need to have lasting powers of attorney in place is vital, before any event.
All the more effective because of the quiet tone it’s written in.
As an experienced medical nurse, who has given palliative care to patients with terminal cancer or chronic illnesses for 35 years, I can reliably report that the polar opposite of what is alleged in Dr Bell’s article is usually the case.
Those with terminal illnesses are usually allowed to die without the benefits of effective painkillers and sedatives , such as Morphine and Midazolam, which ease pain and suffering, since medical staff feel compelled to attempt to maintain futile treatment, due to fear of litigation and pressure from unrealistic relatives.
I am not denying that the experience of his friend may indeed have happened, but would argue that it would be an outlier, and an exception to the rule.
Have you considered that you might be the exception to the rule?
I am frustrated but not surprised to hear your story.
What an excellent and sensitive article. This should be required reading for all doctors and medical students or anyone else who actually cares about their fellow human beings. Thank you for publishing it.
I think this piece should be printed out and given to every member of staff who works at that hospital and it should be pinned on the notice board, perhaps then each individual will realise what they are doing is wrong, and individually decide that they will stop doing it.
How sick our medical institutions have become.
They’re just following orders in order to meet targets.
Yup – this was the type of treatment my father received too. Not cancer, other stuff – all consequences of other medical ‘solutions’ to problems he had. Solved one thing, caused multiple other problems. Lowlight was cornering a junior doctor, begging for my father to be allowed water without thickening powder in it so that he could drink more water to help resolve the UTI he had. Junior Doctor not allowed by the system to make this decision – had to be the nutritionist, who was not on the ward, not even in the hospital as far as we could find out. We resorted to sneaking him unadulterated water. My mother had to point out to the nurses that he was running a really high temperature (his third bout of sepsis, which is what finally did for him). He died as we were dashing to his bedside and I feel certain they delayed the “you’d better come in” phone call. Whilst each individual within this system might be trying their hardest given the resources they have, the whole machine adds up to an inhumane, undignified decline. I pray when my time comes I go fast or in my sleep. Being “cared” for in hospital is the last thing I want for any of my loved ones.
Thank you for this piece – if only more people would read and consider it then I believe there would be real hope for positive change
The inhumanity of the treatment received by so many who find themselves in Matt’s desperate situation is both terrifying and appalling
Unfortunately due to my own circumstances I cannot claim I don’t have a close personal interest in this issue but I’m sure the overwhelming majority would express their deep concern and willingness to strive for something far better for so many when they need simple compassion and humanity