Following the majestic lead of Twitter, I stumbled upon this thread:
There are several interesting candidates for “Justifiable Deviances”: “Functional Nonconformity”, “adaptation”, “Workarounds” etc. Of all the suggestions, “Expertise” caught my attention. To compliment his suggestion, Steven Shorrock linked his page with lively examples to illustrate how reality often deviates from prescribed plans (fig 1), and that the specialism of medical staff gives them the authority to make decisions that might deviate from the standard. For example, nurses might change the time of insulin administration to meet the arrival times of meals on ward. Another Twitter user, however, questioned the notion that these medical judgement could at all be impartial, and therefore, leave space for incompetent and immoral practice. This brought my memory back to a conversation I had with my father.
My father is a respiratory medicine consultant. He takes pride in providing the best care to his patients, nights in and nights out. He has his fair share of “justifiable deviances”, most of which converted into Thank You Cards on the shelves, but there are occasions when things did not go as planned. There are occasions when the family of the deceased filed complaints to the medical council, and his medical judgements would be put under scrutiny, often against the “standard procedure”. These trials seldom bother him, rightfully so, as he is consistent and transparent in how he communicated and shared decision making with his patients. However, as we share the bottle over Zoom that night, there is this moral dilemma I felt imposed inadvertently by these complaints on my father, in the way he described the case of Pt. X .
A case study: Pt. X
Pt. X was late into their lung cancer when they came to my father. They presented with shortness of breathe and persisting lack of energy, and can barely take any stairs. After several courses of treatment, their lung function returned to pre-cancer level and Pt. X regained independence. After years of cancer management, Pt. X’s condition deteriorated, their lung function compromised, was wheelchair-bounded due to difficulty of breathing, and had to rely on carers for daily activities. There is nothing more to be done according to standard procedure. My father suggested a non-standard treatment that he believe could partially recover Pt. X’s lung function to allow them to regain a certain level of independence. Pt. X acknowledged the risks of the surgery, saying they would rather die then to be left as a burden to their family, and decided to go for it. Surgery was successful, however Pt. X passed away on operation theatre due to other surgical complications. Pt. X’s family filed a complaint to the medical council, which was dismissed after some investigation.
I could imagine the complex feelings my father must have been through: the grief of losing a patient he cared for such a long time, the stress of his professionalism being scrutinised, the sense of betrayal from the patient’s family, and ultimately, the moral dilemma – whether he should have made this option (the surgery) known to his patient in the first place. To answer the question, I would try to draw from different schools of philosophy in dealing with moral uncertainty – being Utilitarian, Deontological and Practical Rationality perspectives. This part is greatly inspired by Professor Trisha Greenhalgh’s article: Moral Uncertainty: A case study of Covid-19. My condolence and respect to Professor Greenhalgh and her family.
A Utilitarian Perspective
A Utilitarian moral theory suggests that whether actions are morally right or wrong depends on their effects (in our context, health). Actions that has the highest degree of moral rightness, or when uncertain, is most probable to maximise moral rightness, are more moral. In our case, we should then ask 2 questions:
Is advising the option of a non-standard surgery morally permissible? I’d say “Yes, but not absolute”.
- If advice taken and successful, Pt. could regain some degree of independence
- current condition was “worse than death” for Pt. – Reduces Negative Disability-Adjusted Life Years (DALY)
Not Permissible since:
- Pt’s health could deteriorate: Risk of dying when Pt. currently not critically ill
- Pt.’s death could have secondary effect on their family etc. emotional
Is NOT advising the option of a non-standard surgery morally permissible? Similarly, “Yes, but not absolute”.
- Out of Standard Procedure means there is Nothing more we should do
- Medical resource could be distributed to other patients in need
Not Permissible since:
- Pt. would be distressed by the news
- Pt.’s health would not improve from their current state
Based on the Utilitarian perspective, whether putting this option of surgery on the table is moral comes down to how likely the desired and undesired outcomes would occur. However, It occurs to me that there is a major conflict in what is deemed to be “good health” – what should be the endpoint of treatment? In the case of Pt. X, proposing the surgery would be deemed more morally permissible if health is evaluated under DALY, to treat such that Pt. could reach their maximum potential of life in their remaining years; whilst the opposite would be true if the endpoint was to manage deterioration of chronic lung cancer. I am in no position to claim to know the risks of the procedures, nor decide if Pt. X’s conditions should be maintained but not treated. Therefore, the Utilitarian approach is of limited use to me on the topic.
A Deontological Perspective
Deontological ethics concerns the morality of an action based on whether the action itself is right or wrong (under certain circumstances), rather than based on the consequences of the action. It concerns about the motivation by which action is driven. Let’s put together a list of potential motivations of advising and not advising the surgery to Pt. X.
- From expertise, allow Pt. to regain independence
- For Fame and Pleasure from saving a Pt
- To push the boundaries of modern medicine
- To personal development in surgical skills
- To avoid not suggesting an option that could have improved Pt’s quality of life (thus prevent moral injury to self)
- From guidelines, nothing more could be done
- To avoid risk of receiving complaints by “following the standard procedure”
- To avoid “unnecessary” risk of death of Pt, hence emotional burden on family
- To vacant resource for other Pt
- To avoid suggesting an option that could cost Pt’s life
A deontological moral theory examines the doctor’s motivation in sharing their advice with patients. It depends on whether the decision (of disclosing) is made based on the best interest of the patients.
The deontological model triggers another conflict that medical professionals might diverge on what the roles of “Standard Procedures” in healthcare setting would be. Some regard the “Standard Procedures” as “the gold standard evidence-based” practice, thus following the “Standard Procedure” serves as a safety net as medical professionals would be sufficiently protected from medico-legal responsibilities. Some perceive the “Standard Procedure” as general recommendations and references to guide, but not to dictate medical decision making. Taking necessary deviances from standards based on contextual factors is the value of expertise in a complex, noisy environment.
The former view, embodied as defensive practice, defined as solely following “Standard Procedures”, could be an unwarranted consequence of a medical system where clinicians are punished economically and socially by deviances that did not fare good outcomes; whilst good practice beyond medical standards are seldom rewarded or glorified. It is much easier to find news regarding medical malpractices or negligence than any positive news focusing on individual merits (Could this be partly due to how insurance and legal systems works? We can find numerous catalogues dedicated solely to medical malpractices, and I’d be surprised to find even 1 doing the opposite).
I am not claiming that medical professionals should be let loose to do whatever they see fit, but to state that defensive practice could camouflage itself within “Standard Procedure” and be iatrogenic. This predisposes medical professionals to “stay safe”, take no risk and continue enjoy their social status; while patients, mostly unknowingly, have their opportunities to get better – however we would define it – denied.
I think this defensive mentality feeds into the power dynamics between physicians and patients. The physician-patient power imbalance is ever persistent, which could be partly attributed to the 3 gaps (The Knowledge Gap, The Power Gap, The Arousal Gap) as illustrated by Dr Patricia Cantley in her blog. I would add, building upon the Knowledge Gap, optionality, or the choice of disclosure vs concealment is really what gives doctors their power. The choice of concealing a potentially beneficial treatment option is selectively protected by law, and the choice of disclosing a potentially beneficial treatment option punished. In a patient-centred shared decision making rhetoric, physicians’ roles include gatekeeping evidence-based treatment options, communicating risks and benefits of these options, and facilitating patients to navigate within the medical system. If the treatments options are locked within the “Standard Procedures”, there would be no true shared-decision making. The physicians always had the power of optionality. If “Standard Procedures” are the only thing that is of our concern, I’d say the days are numbered before AI completely takes over healthcare.
Enough side-tracking, back to the topic. It is inconvenient that we could not go back in time and read people’s mind to make an objective judgement on whether one’s action was stemmed from a morally-sound motivation, but this could well serve as a alarm bell for us in making future decisions.
Practical Rationality Perspective
Practice rationality concerns not only empirical facts, but also attempts to capture subjective emotions, narratives and contexts in which an action took place. The decision to provide the option of treatment would be moral in my portrait of Pt. X’s story. Being a strong provider of the family who’s pride and independence stripped away by chronic cancer, Pt. X is desperate to get better, or else they would rather die. It is difficult to argue against this account unless there is more context to Pt. X’s background, relationship with family etc. which we could not illustrate. Contingent on the adverse outcome (of death), we could argue that Pt. X’s family members would have to bear the emotional burden of losing a close relative pre-mature to their original course of life. This could have been what they felt, which drove the action of filing the complaint. Yet this line of reasoning reverts back to the naïve consequentialism, and is unhelpful for us to make future decisions morally.
But, does it really matter?
However, this highlights the crux of our discussion. Discussing what is morally right might be meaningless, when a right and moral decision (of disclosure) does not mean that you would not be punished, in a system where Punishment is solely determined by Consequences. Even all of the complaints were dismissed, the stress you’ve been put under, moral dilemma, reputation tarnished, professionalism questioned… None of these would be reimbursed or valorised. It’s simple operant conditioning, punishment of a moral action discourages future moral actions. It wouldn’t take long until “standard procedures” precedes morality in healthcare. May this be a naïve outcry for change.
You either die a hero, or live long enough to see yourself become the villain.Harvey Dent, The Dark Knight.
Reflecting on my experience writing this blog, my main motivation is to reassure, comfort and encourage my father – to choose to be stubborn by doing what is morally right. And I hope the same message goes out to every one of you who’s doing the same.