Being family-friendly does not encourage families to be friendly. We must start with boundaries, and then find purpose in our dealings with them.
The sun rises on the Gen Med ward in Average General Hospital. The sky shines a brilliant azure through the window-panes; the koel birds in the rain-trees are happily chirping; the geriatric patients have declared their daily world war on the nurses trying to bring them for their daily dump. There are no sickies today, no vasculopaths with difficult veins, no overflow psychiatric patient trying to start another messianic religion. Rounds go on without a hitch — each junior takes 7 to 8 patients today, a good number. The team consultant is a pleasant AIM specialist who gives his credit card to the SIP after rounds to buy drinks. It is a perfect day.
But as the team sits down to begin doing changes, a barrage of Teams messages hits their phones. Two-thirds of them say the same thing: “Doctor, the family of Bed ___ just called and they are asking for an update.”
And so begins the most dreadful part of the day.
Speaking to families is a task which does not instinctively spark joy in the hearts of non-masochists. No other part of the job is so volatile. For a seasoned HO, checking through a patient’s orders takes 1 minute, a referral takes 3 minutes (depending on how justified it is), a blood transfusion consent takes 5 minutes (depending on linguistic and technological barriers), and a difficult IV cannula for a dialysis patient takes 25 minutes (10 of which are spent hunting for the ultrasound machine). These are easy.
But when calling a family, the possibilities are endless. Angelic and demonic, brief and obtuse, reasonable and psychotic. The pleasant next-of-kin (NOK) is a rare delight, and they are far and few in between. Negative experiences are far more common, and at times defy human comprehension.
Many physicians who come to Singapore for work, having already accrued inpatient experience in their respective countries of training, swear that family updates to the extent at which we do them, are not a thing. These physicians come from both Commonwealth and non-Commonwealth health systems. This establishes that the problem of family updates is not universal.
If it is not universal, and not necessary, then it is a problem which can be done away with. Inspired by the concept of Systems Thinking (c.f. Six Steps to Thinking Systemically by Karash and Goodman), we shall explore how we can solve the problem of family updates, so that you don’t have to think any further.
Step 1: Tell the story.
Speaking to a patient’s family is not bad in itself. A great deal of patients in the older age groups are poor historians, for whom corroborative history is necessary if we want to have anything to write under History of Presenting Complaint. Thereafter, communication is a necessary fixture in the delivery of healthcare. It certainly does not hurt for the NOK to be continually involved, especially since they are the ones taking over the care of the patient after discharge. This is far more important if the patient is not anticipated to be able to care for himself or herself. Moreover, none of us, particularly those who have had family members spend time inpatient, would be too pleased if we had no idea what was going inside. Family updates are thus an essential service, which, ordinarily, ought to uplift a person and inspire a basic measure of gratitude. Why, then, is it a task rarely associated with positive feelings?
There are 3 commonly-encountered pitfalls which, each one standing on their own, can ruin the day of a physician: situations which are confusing, time-consuming, and disparaging.
There are 2 broad categories of confusion: that which exists on the physician’s end, and then the NOK’s. The time-constrained physician does not speak to a patient’s NOK for fun. They usually have a purpose in mind, be it taking a corroborative history (the pinnacle of which is the dreaded Comprehensive Geriatric Assessment, or CGA), eliciting goals of care (full active resuscitation vs. partial code vs. comfort care), or providing an update on their general situation. When the intended objective cannot be achieved for one reason or another, the result is confusion for the physician. What confuses a NOK, on the other hand, is often multifactorial, and will be dissected later.
Take, for example, this scenario, which could have been pulled out of any one of a hundred progress notes signed on a Sunday afternoon:
CASE 1
A Gen Med HO rounding actives on a weekend receives your average elderly mildly-demented uncle admitted from home with community-acquired pneumonia. Who, on review, denies all complaints, and swears he is the healthiest ah kong alive. This contradicts to some extent the triage complaint from the paramedics who brought him to the ED, which implies that he has been having fever with chills and hacking his lungs out since last weekend.
The HO spends the next hour on the phone, getting bounced from family member to family member. The nominated spokesperson in the system is the patient’s daughter in law to his eldest son, who does not live with him and does not even know he has been admitted. Getting through to the correct son is equally challenging because he picks up in the middle of work on the Sunday morning and keeps talking to someone else off the line. He is equally clueless because he is in Guangzhou on a business trip, and requests that the HO speak with the domestic helper caring for the patient at home instead.
The domestic helper, fortuitously, reaches the ward around that time, and is able to provide at the bedside the cogent history so desperately sought for. But now the HO realises that the helper is likely not the proper spokesperson empowered to discuss goals of care, and is forced to call back the original daughter in law. She takes it the wrong way, thinks the patient is in critical condition, and, after coming to an understanding and calming down, simply insists that the inpatient team do “everything possible” and go “all the way” to save the patient, despite all attempts to actually clarify the goals of care. She then requests that the team also update another of the patient’s nephews because he works in healthcare, and she has not understood a word of what has just been conveyed to her over the past 20 minutes.
The chaotic process as demonstrated by this case is far from uncommon. The average Gen Med team encounters at least 1 of these each day, which, multiplied across the number of Gen Med teams in the country, adds up to a figure far too large for comfort. Confusing as it may be, 1 hour is still not a terrible amount of time to spend on communicating with a NOK. Consider this next account, the type of which is less prevalent but certainly not unheard of:
CASE 2
A Gen Med team has finished exit rounds early, and everyone gears up to complete the day’s final changes so that they can leave while the sun is still up. One of the patients is an elderly lady on haemodialysis who has been admitted following a first episode of bleeding per rectum. The ward sister conveys to the team MO frustratedly that the various children of the patient have been calling the ward nearly every hour, requesting for the patient’s latest vitals, and haranguing the staff to get the doctor to give them a call.
The MO gets on the phone with the patient’s son, also the nominated spokesperson, essentially to update that the patient is stable, and will be reviewed by the surgeons tomorrow for consideration of scopes.
What follows is an extended phone call with no end in sight. The patient’s son is on a fact-finding mission, and is certain that the bleeding has been caused by one of the medications the patient has been taking. He demands the MO read out to him every medication the patient has taken in the last 48 hours, google-searches each one while reading out loud their adverse effects listed on Wikipedia, finally decides that the culprit is Cinacalcet, and demands the patient be taken off it.
He then asks for every possible cause of blood in the stools. He is convinced, based on his own reading, that the patient’s bleeding is caused by piles, because the internet has told him that piles cause “fresh blood”, and therefore a colonoscopy is not needed for the patient. He has never actually seen the patient’s stools, which contained altered blood, and insists that a nurse or doctor had used that specific term with him. Now, faced with conflicting information, he demands the MO tell him who exactly had lied to him.
In line with his position that he believes colonoscopy is unnecessary, he expresses interest in a computed tomography scan be done to evaluate the bleeding instead (i.e. a CTMA). The MO explains in circles how a CTMA’s limitations make it an unideal investigation to perform currently, long after the initial bleeding episode. The son refuses to accept this and demands he speak with a Gastroenterology specialist instead. But the time is now 7pm, and the MO, having spent 3 hours on the phone already, cordially explains that it is too late for a referral, and the patient will be seen by the surgeons tomorrow. The son is not pleased, and begins reading off the Wikipedia article on colonoscopy for benefit of the MO’s learning.
The MO had recognised the futility of the conversation by the initial 30-minute mark, and at that point had begun to suggest a family conference to clarify the son’s doubts in person. The son had agreed, but when asked for his availability multiple times, would change the subject and carried on with his grilling.
At the end of it, the son requests that the MO give his brother and sister a call as well to explain to them what had just been explained to him. The MO declines, citing hospital policy that only 1 nominated spokesperson be updated. The son does not accept this and claims that all previous doctors had been happy to do so.
Long NOK updates come in many shapes and sizes. As agonising as this time-consuming incident sounds, this NOK can still be regarded as fairly amicable, and if we follow his logic, not altogether unreasonable. However, to a junior physician, time is precious, and family updates like these can cost precious minutes to hours which could be spent having meals or going home. Next in line comes the NOK who is downright abusive:
CASE 3
A frail old lady with severe dementia admitted for functional decline and caregiver stress spikes a fever of 40°C on the ward in the late afternoon. It is her fourth admission this month and she is on the decline. The ward MO attends to her, and over the next hour, manages to establish IV access and draw enough bloods for a full septic workup. Having documented her review, sent off the investigations, and started an infusion of Piperacillin-Tazobactam, she hands over to the on-call MO and prepares to leave.
On her way out, she notices the patient’s children by the bedside, and decides to update them as a courtesy. The time is 6pm at this point. She explains the progress over the afternoon and that she has informed the on-call doctor to come around in a while to check in on the patient’s condition.
The patient’s family is anything but grateful. Pointing out that the MO is holding on to her bag, and correctly inferring that she is on her way out, they verbally curse at her, accusing her of being heartless and irresponsible and willing to leave their mother to die. They are unable to accept that the MO needs to go home (imagine the reaction if the MO were to tell them she had dinner plans) and demand that she herself update them with the results of the septic workup that night, even though it is made clear to them that the laboratory findings would not change the management or the choice of antibiotics. Obviously, they take down her name and MCR number.
That there is an entire category for this sort of disparaging situation is already excessive and deplorable. Workplace abuse is an inevitability in any setting (c.f. Jacob Zuma’s famous line in the South African Parliament), but in hospitals, it is a regular occurrence, and all too often tolerated in the name of sensitivity.
These cases serve to outline the challenges and anxieties faced by physicians in dealing with the families of their patients, and to set the scene for the story we wish a happy ending for. Let us now move on to the next step.
Step 2: Analyse behaviour over time.
Difficult families take significant tolls on inpatient teams. As described, they can take up inordinate amounts of time which could be redistributed to other manners of ward work, or adjunct activities like training. Time is also depleted by the onerous documentation needed to ensure that the details of lengthy and contentious proceedings are captured, should there be a complaint and formal investigation.
Many consultants are not ignorant of this matter, and actively look out for the welfare of their team members. Some measures taken by consultants to reduce the burden of family interactions on junior physicians include:
- Limiting the frequency of routine family updates to once every 2-3 days;
- Utilising time on (usually Medical) rounds to thoroughly update family members at the bedside on behalf of the entire team;
- Ensuring that certain difficult NOKs are only updated by a senior MO, Registrar, or even personally by themselves;
- Having a low threshold to escalate to a family conference if complex or unreasonable concerns are elicited.
These measures have improved physicians’ quality of life where they have been implemented, albeit not universally. Their degree of benefit is further limited by the unfortunate reality that they are only effective in reducing the frequency of unpleasant interactions, whereas the potential for unpleasant interactions remains the same.
A desire for meaningful change must encompass not only what we wish to see in the line of work, but also what we wish to exist.
Step 3: Define goals.
A physician’s utopia is fated to never exist. Consider competing interests within the same Medical team. The HO’s ideal workplace is one where he clocks in at 9am, thoroughly takes care of 1 patient without getting redeployed, eats a good lunch, leaves early by 4pm, and never has to go on call. The MO’s ideal workplace is similar, but has good HOs in it. The Registrar’s ideal workplace is one where the blue letter phone doesn’t have a working connection.
Nevertheless, physicians of every rank can agree that we would very much like family updates to be a simple and pleasant affair. Or, at the very least, to eliminate the unpleasantness in it.
This is a reasonable expectation because many family updates are like this. Happy families exist: those who are watching stroked-out grandma start to walk and talk again, or dad waking up in the morning after his ruptured appendix has been removed, or premature baby daughter about to check out of the NICU for good.
In any case, a relative lack of hope does not excuse the lack of civility so frequently encountered.
This calls for measures on both sides of the fence. We have already described how physicians might work to protect themselves from nasty families better. On the other hand, patients and their families must also become reasonable, if not understanding, if not compassionate.
Unfortunately there is no historical precedence for such a society. All medical traditions from antiquity were fraught with deadly consequences for physicians who failed to meet the expectations of their patrons. In medieval China’s imperial court, a sick emperor who failed to recover meant certain death for the physician, give or take his disciples and extended family. Thankfully our patrimony in Western medicine shields us from involuntary state-sanctioned execution and exile. In any case, our patients are, for the most part, not Chinese emperors, though their families may feel strongly otherwise.
Step 4: Identify the structure.
Let us break down the million-dollar question: why are some families like this?
Answering this requires some degree of empathy, led by our own experiences of having family members admitted to hospital, with bonus points given if these events occurred before we became physicians. Everyone falls sick, so few of us, if any, have not had such an encounter in life.
Before we point out the condition of inadequacy in how a NOK may act towards a physician, we should consider the ideal relationship between them. We have a term for right order between things or persons: justice.
Plato describes justice as the having and doing of one’s own. In the Republic, different members of society have different roles proper to them, such as Producers, Auxiliaries, and Guardians, and the harmony in his ideal city-state of Kallipolis relies on each class performing their duties in right relation to one another. His model is an extended allegory for individual justice and how we can foster the right conditions for it. Here we can apply it to our present reality — instead of a trip to Kallipolis, let us return to an average Tuesday on the wards, with the perspectives flipped around:
CASE 4
Imagine you’re a middle-aged office worker. You are at work when your now-very-old father blows up your phone, and tells you that your mother, whom you last saw well last week in their home, has been vomiting since yesterday, and that she woke today with a bad cough and a fever, and then just fainted and landed on her bum; he’s called an ambulance and they’re taking her to the nearest hospital.
You successfully beg for the day off and rush down to the ED of the hospital, where your details are taken down as the nominated spokesperson. You get a call from a ED MO who informs you that she’s doing okay for now, and they’re doing blood tests and scans and you’ll hear back in 2 hours. After some waiting, during which time you’ve been allowed inside the ED, the MO comes back with the results — there’s a patch over the right lung, meaning she’s got pneumonia, and one of her backbones has been slightly crushed, meaning that she won’t be able to walk well. Simple verdict: admission to the Medical ward for antibiotics and physiotherapy, with no guarantee of discharge anytime soon. This affair being settled for now, you leave your very miserable mother alone, running antibiotics through an IV cannula, to wait for a ward bed, but before you go back to work, one of the hospital staff brings you aside to discuss how much you’ll have to fork out for the next few days.
You spend the evening updating your own 2 siblings, your father, as well as your mother’s siblings, on what’s going to happen. You are informed of the bed allocation through a text message, and a pharmacist gives you a call for medication reconciliation, for which you need your father to send over the medication list from his place, and call the pharmacist back. Finally, late at night, the on-call ward MO rings you up, asking for a corroborative history you can’t actually provide reliably. The following morning, while you are again at work, the primary team HO calls yet again, hoping to confirm details in the history you know little of, and gives you a verbal menu of what you want your mother to get if her heart stops — chest compressions, invasive ventilation, a trip to the ICU, or none of the above.
You have a late-morning meeting that got cancelled, so you take the opportunity to stop by the hospital at lunchtime. You find your mother slightly worse for the wear, and she angrily indicates the tube protruding from her pants that she now urinates through. You ask the nearby staff nurse what it’s for, and she replies that the HO on call last night had ordered it put in because the patient’s bladder was full, and she couldn’t transfer to the toilet to try to empty it because of her pain. You ask the nurse when it can be removed; she doesn’t know, but she’ll ask the doctor to give you a call.
This scenario captures only what happens within the first 24 hours of this patient’s arrival to the hospital. For someone experiencing it for the first time, it can be frightening, and in the process of communicating large volumes of information, even tiny deficits in clarity may result in some being lost in translation, misheard, or outright forgotten.
This relatively straightforward case exposes the various stakeholders in the physician-patient-family relationship and their respective duties. Among the physicians there are:
- The ED MO, who communicates the results of the initial workup in the ED as well as the required disposition;
- The HO/MO on call, who reviews the patient on arrival in the ward, initiates a more comprehensive workup and management plan, and contacts the NOK if needed to obtain further history relevant to current and future management;
- The primary team HO/MO, who receives the patient from the on-call team, consolidates the issues, arranges for investigations and management plans to be performed as per the team consultant’s input, and to ensure that the patient and NOK are aware of the salient details which affect them.
The family member or friend who takes charge as the nominated spokesperson will need to competently execute the following duties:
- Provide a coherent corroborative history of the presenting complaint, and to synthesise information given from other persons, such as family members or a domestic helper, to form one;
- Have an understanding of the patient’s functional situation in order to give history for a CGA (where required);
- Retain information conveyed by the physician, and communicate it accurately to other stakeholders including family and friends;
- Consolidate all concerns and questions raised by the abovementioned stakeholders to raise to the physician as the representative of the whole group;
- Be available for phone calls between 8am and 5pm, as physicians may attempt to make contact within those hours to provide relevant updates.
These duties summarise the essential structure of the functional relationship between the physician and the NOK. Breach of these duties on either side results in injustice, in which state harmony is impossible, and pleasantries are nothing but lies.
Step 5: Explore the issues.
There are frequent deficiencies on both sides. The physician’s are much easier to resolve. These mainly pertain to delivery of information in a comprehensible manner, which can be ensured with a simple read-back, as well as a reasonable display of empathy if the NOK is emoting. It is rare that a physician with interest in keeping hold of his practicing license will deliberately make himself hard to understand, or intentionally act in malice towards a NOK. Unintended things may occur but these become even less likely with increased experience.
Issues on the side of the NOK can be both personal and systemic. Personal problems typically arise from individual circumstances, such as the severity of disruption the current hospital admission has caused to the NOK’s life, the NOK having a complicated or estranged relationship with the patient, or other circumstantial details making it difficult to perform what is expected as the patient’s nominated spokesperson. We posit other facts, beyond individual control, which intrinsically compromise the potential of a NOK to be reasonable.
Firstly, we must consider the living situation which is typical in our society. Most of us live in apartments, and multi-generational homes are uncommon. This generates a diversity of milieux for potential patients, but ends in the fact that a huge number of them, especially those with multiple admissions, do not have an actual relative as their primary caregiver. That is to say, an old man with a previous stroke being admitted for a new condition is as likely to have a domestic helper overseeing his health needs than his actual son or daughter (c.f. that one Duke-NUS study by Truls et al. published in the Journal of Gerontology in 2013). In this group of patients, the NOK may be cursorily involved in the patient’s healthcare at baseline, but is unlikely to know enough to complete a CGA. This means that, during every disjointed encounter with a physician, the NOK will need to be caught up on a great deal of information to inform both themself as well as the physicians of the patient’s condition, and to extrapolate this towards a comprehensive care goal. Many do this suboptimally, for example, simply redirecting the team to take history from the domestic helper, or leaving the domestic helper alone to receive caregiver training, while their lives go on, and they remain content with an incomplete image of the patient’s condition. This disconnection worsens things by adding to confusion, as the NOK may have a misconception of the patient’s baseline, which may be worse than what the NOK believes, paving a highway towards inevitable dissatisfaction with care outcomes.
Next, local health literacy leaves a lot to be desired. This is the case for all generations north of those which grew up with internet access, and even among those with internet access, few use it wisely. To the credit of our senior citizens, the average octogenarian has been hanging around long enough to understand the basics of common things, and will respond intelligibly to terms like pneumonia, urinary tract infection, colonoscopy, drug allergies, and so on. Over decades, they have watched their less-fortunate friends become ill, land in hospital, get better, or die.
Combine this with the fact that this same demographic of patients, mainly those who have family, seem to be allergic to making their own health decisions. Even those who have decision-making capacity (DMC) shy away from exercising it. Those of us who have worked in the ED would know this well, because it happens every day. Admission? “Talk to my son first.”
The immediate result is 1 of 2 outcomes. The first is that NOK updates become much more frequent than necessary. It does not matter that a patient can give his own history, consent to his own care, and speak to his own family. He will not make a decision. Live or die, operate or not, admit or discharge — he will leave it up to his children, and so the managing physician has to speak with his children.
The second is that in many cases, the NOK becomes more powerful than the patient. This is the default for patients who lack DMC, but at least in those cases, the physician’s therapeutic privilege takes precedence in decision-making more clearly. A patient who is dependent on family members is more likely to defer to what they want, no matter how objectively unreasonable, rather than make informed health choices by themselves. This is further complicated when there are multiple NOK with competing interests, forcing the physician (or medical social worker, eventually) to be immersed into their political intrigue. The child holding lasting power of attorney may not be the eldest child, the favourite child, the richest child, and may also not be the one the patient lives with.
The various types of NOK then have to be reckoned with. We ought to first acknowledge and appreciate the existence of reasonable family members who have the patience and grace to fully understand the issues, ask relevant questions, and be medically guided on management recommendations. These NOKs are a joy to speak with and will genuinely elevate the morale of the whole team. And then, there are the rest, a terrifying spread of individuals forming a minefield across society. Among these are the ones who are of reasonable mind, yet certain personality traits hinder optimal judgment and productivity.
There is, most prominently, the anxious trait phenotype. These NOKs worry to a near-pathological extent, sometimes expressively so. This stems from the patient being very precious to them, usually a particularly dear child or parent; alternatively, the NOK may be in a profession which involves frequent stimulation of these protective instincts, such as early childhood education.
CASE 5
A mother brings her 17-year-old son in to the ED. He is a fit and active tennis player, has no past medical history aside from allergic rhinitis, and no symptoms. The complaint is that he has just gotten a ECG done while undergoing pre-enlistment screening, and the report reads, “possible left atrial enlargement”. The mother claims to work in healthcare. She is convinced that her son, her only son, has an unevaluated heart condition which was missed by the negligent Army doctor. Despite an hour of counselling, involving the ED seniors, she will not budge, despite her very embarrassed son’s protests. A compromise is reached after a single set of ECG and Troponin is performed for the patient, which is ostensibly unremarkable.
The main problem that these NOKs cause is wasted time and healthcare resources. But, excluding those who have true anxiety disorders or help-seeking behaviours, they tend to be reassured by negative investigations, and if placated by an acceptable follow-up plan, will not cause much further trouble.
Another group is the technicalist phenotype, of which an example is described earlier in Case 2. These NOKs involve themselves in the care of patients in a hyper-focused manner, and see the various facets of a treatment plan like variables in a science experiment. If a new intervention is followed by any sort of negative outcome, then there must be causality, therefore the intervention must be stopped. They require systematic and extensive explanations to reach an understanding that, in most cases, their perceived causality is logically improbable, and that there is no real cause for concern, and therefore there is no need to modify the intervention based on their proposed issue. These NOKs tend to be in professions which rely on straightforward causal logic such as mathematics, computing, or engineering. A technicalist tends to be satisfied by copious detail — indeed, the NOK in Case 2 was accepting of the treatment trajectory and outcome even as the patient deteriorated and passed away, and was at no point truly hostile towards the physicians on the team. The downside of dealing with these NOKs is simply how onerous it can be most of the time.
The last group we shall give mention to in this non-exhaustive list is the agreeable phenotype. These NOKs are perhaps the easiest to deal with because they are medically-guided, perhaps a little too much so. These form our society’s vestigial but sizeable remnant of the “paternalistic” model of healthcare. Medical school lectures on healthcare and society reminisce these old days, where decisions made regarding a patient’s treatment relied more on the physician’s therapeutic recommendation than the patient’s ability to understand all the options. The physician explains to the patient the problem, and the best way forward. Nowadays we are ordered to be more progressive, because we should not see ourselves as arbiters of the patient’s health, but to place the patient’s autonomy first (c.f. the modified Montgomery test). We may have moved forward in this sense, but that does not mean all our patients and their families have come along with us.
CASE 6
An elderly uncle who presented to the ED one night with 2 weeks of progressive giddiness and weakness is found to have a serum Sodium of 125. He obviously needs admission, and when this is explained to him, he demonstrates the basic criteria of DMC. That is:
- He knows that he is unwell in some day, and needs admission, and that if he chooses to go home instead, bad things can happen to him;
- He can retain this information;
- He understands that, between admission and going home, the chances that bad things will happen to him are lower;
- He can communicate that he does not mind being admitted.
But all the technicalities of sodium correction are hurting his brain (like it does to most medical students). To save himself the trouble of thinking, he relegates the decision to his son at the bedside.
The son fares no better than the patient at understanding the medical issue, but also agrees for admission. The uncle’s symptoms are now reasonably mild, so the decision is made to just start a normal saline drip and sent him to the general ward.
In the gap of time between arrival in the ED and the initiation of strict intake-output charting in the ward, however, the patient begins to rapidly diurese. Alarm bells are only raised the following morning. By this time, repeat bloods have been drawn which reveal that the serum Sodium has shot up to 135. The team quickly manages this with desmopressin and dextrose, and updates the son on these events, making sure to counsel for increased risk of osmotic demyelination syndrome (ODS) and its potential morbidity. Most of these facts go over the son’s head, as the patient now clearly appears clinically well and asymptomatic. All the son understands is that the Sodium, which was the cause for admission in the first place, is much closer to normal range; all he needs to know is when to bring the patient home.
The following week, as was warned, the patient begins walking funny, making strange faces and noises, and later complaining that his arms and legs are too weak to move. The diagnosis of ODS is made following a Neurology consult. The son, and the family are shocked, despite having been appropriately counselled, as they had truly believed that the patient was on the mend.
The main issue in handling an over-agreeable NOK is that looking out for these gaps in understanding is difficult when they are simply playing yes-man to everything the physician says. Updates given to these NOKs are the most brief, and therefore the easiest of all. But an unusual lack of questions or resistance may be a red flag, and attempts to elicit the degree of their understanding should be made, with the goal of clarification. This issue may thus be ameliorated, but not completely solved, by having them do active recall while being counselled, as well as to have them read-back all salient points at the end. However, not all physicians may have the time or presence of mind to ponder what is in the mind of the NOK who is already agreeing with their plans.
All possible phenotypes (not limited to the above 3) considered, let us not, moreover, forget that this is Singapore, a nation of pathological grumblers and pessimists who will attempt to find fault in all things with fervour triple of a Jesuit trying to find God in them. Any person motivated by a strong enough cause, no matter how petty, will find a flaw even in the most spotless of things. The biblical Satan who wishes us damned is thus named, Accuser.
The sum of these problems gives us our unpleasant reality. For a large portion of patients, the NOK cannot give a corroborative history, are unable to describe the patient’s baseline nor their goals of care, are unlikely to convey medical information unadulterated, may not represent the wishes of the entire family as the patient may otherwise intend, and through it all, is under the immense stress of having to communicate big decisions while believing them to be full of problems. For such a person to come off as reasonable or pleasant, a great degree of underlying virtue has to be exercised. All this still does not factor in the ones who are purposefully unpleasant.
Given this bleak reality, it is little wonder why things are the way they are.
The final thing to keep in mind is that even if the NOKs themselves are unbearable, even in the most terrible way, their conduct should not affect our relationships with the patients themselves. As we can appreciate in this final case study:
CASE 7
A young socialite is warded for monitoring following a complication of a minor surgery. She is kept in a VIP suite and is frequently accompanied by her parents who sleep over in the side rooms. Over the course of her short stay, she experiences a constellation of mild atopic symptoms which are unrelated to the cause of her admission; she is content to manage on her own with over-the-counter medications she already has. When she reports these symptoms to her parents, however, they alert the nurses and ask for her to be reviewed by a doctor.
One such CTSP occurs late at night, so the HO on call drops in to see the patient. Unfortunately, her parents are less than happy to see a mere HO, and impolitely turns her away on account of their perception that she is inexperienced; they demand someone more senior instead. The Registrar on call ultimately has to be called in to placate the parents.
Later on in the day, the patient reports yet another rash to the ward nurse, and the daytime HO is called in. This time, the patient’s parents are absent, and the HO is pleasantly surprised to find that the patient by herself is good-spirited and cheerful, has no criticisms whatsoever about his rank, and is more than happy for him to proceed with his review. He orders up a new antihistamine for symptomatic relief, and the patient politely thanks him as he leaves.
It goes without saying that even nasty patients should not receive impartial treatment from a physician, even though the physician will invariably have reserved feelings towards such patients. Moreso should a physician refrain from even harbouring reserved feelings against a patient on account of their nasty NOK, as these are separate individuals who are only accountable for their own actions. Even after we judge them separately, either way, the patient requires a duty from us to give them our best.
Step 6: Plan the intervention.
Many of these elucidated issues are just part and parcel of the occupational hazards of living in society. Whether our present society is terrific or terrible is not a question we can answer fairly now, and we shall leave it up to the anthropologists of the 22nd Century to decide. It remains that its pitfalls are a given, and difficult to root out wholesale.
As earlier stated, there are 2 tiers to our goals in this brainstorming. The lower tier is to find ways to eliminate the unpleasantness in family updates. The higher tier is to find ways to make family updates a pleasant affair.
What we should do
To the higher goal, we already know that family updates can be pleasant, though this is obstructed by frequently-occurring confusing, time-consuming, and disparaging elements. The maximum potential of pleasantness of a NOK is a fixed point, so our measures must focus on reducing the potential of these negativities. Confusion usually arises from social circumstance, and disparagement is simply a factor of whether the NOK is a good person in control of his or her temper. Realistically, the only modifiable factor is time. As described in Step 2, there is already some good work being done on the ground by sympathetic bosses. We propose that these be taken further in the spirit in which they are being implemented.
The most obvious is that we should move away from family updates being routinely offered for patients with DMC. A patient who has DMC is able to retain and communicate information back to the physician, so , save some patients in awkward or gnarly home situations, it should be fully within expectations for them to retain and communicate this information back to their own families. Instead of shifting the burden to physicians having to explain everything and beg twice, we should focus on creating means for patients to communicate conveniently with their family members on their own. One method could be to allocate a personal media device, such as a tablet computer, to each hospital bed, so that patients in them can start voice or video calls with their family members. This technology is not novel (see airline entertainment systems, some of which can synchronise to the passenger’s own mobile plan) and can be paired with accessories such as stands or side mounts for patients with accessibility needs. To avoid disruptions such as ongoing calls during rounds, these devices can be temporarily deactivated during certain hours, just as airline entertainment systems are suspended during important announcements. Enhancing the means through which patients with DMC can communicate with their families will, in theory, empower the patients themselves, provide more reassurance to their family members, and reduce the incessant request for updates from a physician. Whether this relieves provider burden to an extent that justifies its cost is something worth exploring by any healthcare group which cares enough, because if we know anything at all about our system, it is that money is never an issue.
Next, there is the matter that some patients with DMC may not have directly requested for a family update, even though one is requested by the family members themselves. We ought to fully recognise the fact that it is illegal to update a patient’s family without the patient’s explicit consent (c.f. Personal Data Protection Act 2012) in Singapore, though it is difficult to imagine any civilised place in which it would be legal in spirit. Most consultants in Medical teams, when rounding patients, have a habit to ask if they would like the team to give a call to their family; if the patient agrees, the HO or MO can then document the plan to update the family in their rounding note. Regardless, it remains common that nursing staff on the ward, particularly the more junior, acquiesce far too quickly when family members call or show up demanding an update from the doctor. The tendency is to simply alert the physician in charge of the patient regarding the family’s request. The physician may be otherwise busy, and may, in haste, proceed to update the NOK without first ensuring that the patient has agreed to it. It should be in the first place, as a rudimentary due diligence, that any nurse or allied health staff who requests for a physician to update a patient’s family should first ensure that the patient has explicitly requested for a family update to be made. This immediately filters out a portion of unnecessary family updates and also protects the whole team medicolegally.
Now, moving on to patients who do not have DMC: family updates, like any other action by the physician, are a therapeutic decision. The timing and frequency of family updates should be determined holistically by the senior physician managing the patient and not be based on the whims or temper of the NOK. Expectations should be made clear from the moment the patient reaches the ward. A closing line to every initial NOK update could be some words to the effect of, “Our team will next update you in 2 to 3 days’ time, unless there are any significant changes to the plans as discussed, or your loved one is ready for discharge before then.” Many HOs and MOs already do this from experience.
Better yet, we can consider what can be done to regulate the frequency of family updates on a systemic level. When administrators want to control the volume of certain orders such as powerful broad-spectrum antibiotics, strong painkillers, or contrasted scans, they are able to programme the EMR to generate checklists for the physician to complete prior to signing the order, to verify that the intervention is indicated. Though a little more extreme, something similar can be rolled out for family updates. For instance, whenever a physician calls to update a NOK, they must select at least 1 of the following options listed herewith:
- The patient is deteriorating and/or in danger of demise.
- The patient has consented for corroborative history to be obtained.
- The patient lacks decision-making capacity, AND:
3A. has just been admitted to the ward.
3B. has recently undergone surgery or another high-risk procedure.
3C. is clinically in status quo and at least 2 days have elapsed since the last family update.
3D. has been planned for discharge.
3E. has been harmed by an adverse hospital event. - Others (see comment).
Conditions can be bound and loosed according to protocols set by various departments depending on patient profile and physician workload. While the implementation of something like this would represent a drastic step in policy towards NOK updates, it is also true that hospitals have done the same for less (c.f. ED physicians somewhere in the North having to do literally this because inpatient admissions are being regulated). From a logistical point of view, it therefore seems reasonable.
What we should not do on pain of death
Now let us consider the latter goal of eliminating unpleasantness totally. This seems more absolute and far-fetched than the former but there is really a simple and radical solution: to eliminate the social aspect of the family update.
For the purposes that family updates have, who says they have to be made over the phone, or in person? The NOK could just as well receive updates in the form of a custom text message sent out at the end of each day, or as frequently as the team deems fit. Questions from the NOK can likewise be conveyed over any number of text messages on the same channel, and the physician would have the luxury of time to incorporate their reply into the next daily text update.
Better yet, who says these text updates need to be actually written by a physician? In an era of artificial intelligence and coding of patient information, so much more can be done. Consider artificial intelligence chat-bots already in use by most companies for online customer service needs. Alternatively, a programme can be developed, incorporated into the EMR, which can extract relevant details from the daily rounding note and convert it into a templated draft. Something along the lines of:
9 JUN 2024 17:00 – THIS IS A SCHEDULED UPDATE ON YOUR NOK AT AVERAGE GENERAL HOSPITAL. DO NOT REPLY
WARD 6 BED 9 – TAN AH KOW S*****78A
DAYS SINCE ADMISSION: 1
DIAGNOSES FROM THIS ENCOUNTER:
- Acute gastroenteritis
- Hypertensive urgency
- Hyperglycaemia without ketosis
CURRENT MEDICATIONS:
- PO Aspirin 100mg ON [STARTED 13 DEC 2022]
- PO Atorvastatin 10mg ON [STARTED 13 DEC 2022]
- PO Metformin 500mg BD (pre-meal) [STARTED 27 AUG 2023]
- PO Losartan 25mg OM [STARTED 27 AUG 2023]
- PO Omeprazole 20mg BD (pre-meal) [STARTED 8 JUN 2024]
- PO Metoclopramide 10mg TDS PRN (nausea or vomiting) [STARTED 8 JUN 2024]
- PO Buscopan 10mg TDS PRN (gastric cramps) [STARTED 8 JUN 2024]
- PO Lacteol Forte 1 sachet BD [STARTED 9 JUN 2024]
SUMMARY OF CHANGES IN THE PAST 24HRS:
- PO Lacteol Forte 1 sachet BD [STARTED 9 JUN 2024]
ADDITIONAL COMMENTS FROM PHYSICIAN:
Pt well nil sx. A SNT. BO x1 T5. Off drip. Home cm
This solution is obviously asinine and ought to never see the light of day, despite how much simpler it would make the lives of physicians in this aspect. Similar things, however, have been creeping into practice slowly. The composition of rounding notes and discharge summaries, for example, typically follows some sort of standardised format to ensure that relevant information is captured and can be retrieved under expected headers, such as Past Medical History, Recent Admissions, or Medication Changes. How these details are described varies according to individual preference.
For example, a functional HO or MO may tidy up the Past Medical History section by updating the point about the patient’s long-standing dyspepsia with the results of an oesophagogastroduodenoscopy (OGD) performed during a prior admission which revealed the presence of a duodenal ulcer, and document the start and end date of the triple therapy the patient was prescribed for it. He may choose to abbreviate the procedure as “OGD”, state the month and year of the procedure instead of the exact date, or summarise the OGD findings instead of copy all the text from the procedure report. The result is a unified clinical issue under a single header with a start and an end.
In some departments, particularly those using Epic as their EMR, there has been a movement away from writing notes like this. It is preferred, or even mandated, to take advantage of the system’s coding abilities to log the patient’s Past Medical History or Past Surgical History from a list of pre-set diagnoses in a separate section. Instead of having a free-text Past Medical History section as is traditionally done, the contents of this section are simply loaded into the note in a tabled format via a Smartphrase expansion. So, the abovementioned patient’s duodenal ulcer would appear as one point in the Past Medical History table, and the OGD would appear as a separate point in the Past Surgical History table. This system is touted as a means to improve standardisation and reliability of documentation, but the only clear benefit is really to help researchers and billing staff retrieve data more easily. The benefits are administrative and the downsides are clinical. Physicians, especially junior ones training under these policies, are merely recording data into tables, instead of processing the data into an intelligible statement, an exercise which actually involves clinical reasoning.
This is unconsciously condescending to all parties in clinical practice. The junior physician of the data-driven era is in danger of being drilled like a circus dolphin into an efficient technician, rather than a thinker and moral actor. Policies like these which inadvertently drive the wanton dehumanisation of patients will only make things worse, and are antithetical to the spirit of the medical vocation. Applying this as a solution to the issue of family updates may seem objectionable to us today, but may be seriously considered by healthcare administrators in the future, if the powers that be determine it beneficial for productivity, regardless of the human consequences.
What ought to stare us in the face is the fact that speaking with a patient’s family is never a technical affair. It can be regulated in terms of frequency and indication, but never protocolised or replaced by data. A family member may be curious about the precise implications of certain lab values (which they can see for themselves online via HealthHub, and only cause anxiety), but ultimately all they need to know, and what they will have to explain to the rest of the family, is simply whether the patient is doing good or badly. The answer to this question requires a physician’s judgment. Equally important in the physician’s judgement is how to conduct the discourse in the first place, ascertaining the expectations of the NOK, tweaking vocabulary and tone to succour the needs of the conversation. Finally, the quickest and surest way for a NOK to reasonably judge that the patient is being treated in a humane manner by a real physician, rather than being taken apart and reassembled in a dimly-lit backroom by Terminator Model 101 Series 800, is to see or hear from the actual physician.
In the same vein, as an inevitable side effect of the process, family updates help to stimulate the learning of junior physicians. The responsibility of having to explain a complex disease process, scored in severity by various laboratory values, and managed by several multidisciplinary interventions, to a confused and fearful family member is not altogether unlike those online short clips where grizzled professors are challenged to explain quantum physics to a 5-year-old. The ability to simplify without condescending, while ensuring that no detail is lost for fear or misunderstanding or medicolegal compromise, reflects that a physician truly and thoroughly understands a diagnosis. Most family updates which are justifiably dissatisfactory are primarily lacking in clarity, secondary to the physician either having a deficient clinical understanding of the patient’s condition, or having communicated improperly. A sure marker of a competent physician is, ceteris paribus, a high quality of family updates (holistic, not subjective, quality, since any old clown can charm a patient’s family).
To acknowledge that there is no true way to eliminate the unpleasantries in dealing with patients’ families is not at all defeatist, because it is not a matter of failure in any sense. The potential for unpleasantness exists in all human interactions, even within families and among friends. The only way to remove this potential is to get rid of the human interaction to begin with. Who can exist alone? Even the philosophers who promote solipsism need a society in which they can promote it. Society cannot be removed from Medicine any more than, say, agriculture can be removed from farms — a healer cannot exist unless there already exists another who needs healing.
As much as family updates can be a cause for our suffering, it needs to be expected, just as some patients themselves are unpleasant and directly make us suffer. To perform one’s duties while enduring those who waste our time with their unshakeable anxieties or wish us doom in their despicable attacks is, at minimum, an exercise in fortitude and, at most, an opportunity for charity. As much as we would all feel better if we were paid back for doing this, there is simply no way to remunerate virtue. Perhaps a small number would be given fortunes, while many more of us would be penniless for our own failings. No one alive can claim to have never harboured ill will towards another; the potential exists in us as much as it does the nicest patient’s family member we’ve ever talked to.
Nonetheless, somewhere in the jungle of words spent above, we have discussed the various roots of difficult patient updates, some of their recognisable archetypes, as well as some practical measures most general teams can safely implement. Obviously, these must be interpreted in context — more frequent updates for patients who really are sicker, in units with a higher acuity of care such as Intensive Care and High Dependency, or who are medicolegally complicated, are to be expected. For the benefit of many others, there remains much to hope for. True joy, be it in the practice of Medicine or otherwise, comes from an understanding of the reality around us, and in each one’s own way, the conformation of the soul to objective reality. As reality is painful, so is this conformation. But, to round off the purpose of the copious ramblings belaboured in these thousands of words, this understanding gives us greater clarity on what pain is necessary, and what isn’t. And with each unnecessary pain done away with, there is greater justice and greater delight, food for the soul which lets us crawl onward to the next hopeful day.