Tag Archives: personalised care

Not disordered machinery

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When we think of hospitals we think of a sterile environment. It is assumed that it is a place where your health and well being will improve. That each of your senses can be assaulted in all manner of ways and that because of this, rather than in spite of it, you will get better.

My 30-something year old brother-in-law died in hospital six years ago to the day. He died alone, confused and incontinent. Separated from his beloved daughters and in isolation. The lymphoma that riddled his body was undetected as immunosuppressive drugs stood sentinel over his new kidneys. Everything that could be done was done. He was a young man and the oncologist was determined that he would receive aggressive chemotherapy until she decided that he was beyond her help. We could only watch as he lost his dignity for the slim chance that he might walk out of the place alive. In reterospect it was hard for everyone. He was not ready to die and nor were the medical team prepared to call time. He might have beaten the pathology but it is the journey and not the destination that was the worst aspect of the experience.

Medicine has advanced so much in the last few decades. We now have many life saving drugs or procedures that can be deployed in what were previously hopeless cases. But what hasn’t changed much is the experience of being hospitalised. In the world of blogs and social media we can read the accounts of patients without having to experience them for ourselves:

A man in his fifties who was admitted to hospital with autoimmune haemolytic anaemia, a complication of chronic lymphocytic leukaemia (CLL), first went into a general cancer ward as the haematology unit was full. The ward was depressingly full of very ill old men some of whom died while he was there…..Living in isolation for long periods could be difficult for people who were not used to being alone. Some had felt lonely, frustrated, hemmed in or bored…..Some people found their room pleasant, peaceful and well equipped with television, phone, hi-fi and ensuite bathroom. Neil said his was better than some hotel rooms. Jim said the showers were awesome. Others found their room depressing and had problems with temperature regulation or hygiene. Some people personalised their room with possessions from home. Gilly arranged hers with kitchen, study and reading areas. Brian was disappointed to have no internet connection so he got a modem that would connect his computer via his mobile phone. Some hospitals restricted what people could bring in from home. Healthtalk.org

As new hospitals are built de novo or to replace aging and outdated institutions we have an opportunity to build new ones that facilitate the innate healing powers of the human body. Healing is ‘the result of intention, personal wholeness, relationships, healthy lifestyle, collaborative medical care, healing organizations, and healing spaces’ (The Samueli Institute). The optimal healing environment addresses issues such as: ‘Connection to nature, options and choices, positive diversions, access to social support, reduced environmental stressor, private and  adaptable rooms, less noise, better wayfinding, lounges and waiting rooms with a purpose’ (Terri Zborowsky and Jo Kreitzer). None of this requires a Nobel laureat to spend a lifetime ‘proving the case’. What it does call for is the determination to ensure that hospitals are a place where it is joy to be born, a refuge when you are ill and somewhere to die in dignity when there is no other option. Humans are not disordered machinery to be parked on a ramp in public place while technicians attend to their under belly. If they are treated as such when they are ill their chances of recovery are diminished. Rest in peace Johnny.

Picture by CJ Sorg

First we have to agree that there is a problem

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In order to make progress when we are trying to help someone we have to understand their world view. This was wonderfully portrayed in the Dove commercial. To understand a person’s perspective we have to try to see them as they see themselves but also to accept that as health professionals we may have less influence on people’s choices then we like to think.

It was also underlined in a research paper which concluded:

Overweight and obese youth were significantly more likely to misperceive their weight compared with non-overweight youth (P<0.001). Multilevel modeling indicated that greater parent and schoolmate BMI were significantly associated with greater misperception (underestimation) of weight status among children and adolescents. Maximova et al

Large proportions of the population are now overweight or obese. It may be hard to believe this if you live in affluent suburbs where salad bars, gym membership, jogging and cycling are the norm. In other parts of town it might be routine to eat fast food and wear XL or XXL sizes. As health professionals we have to compete with the messages from ‘healthy’ juice bars where sugar is added to sweet fruit and sold to the public as a better choice than a Mcdonald’s smoothie. Supermarkets sell cereal bars as a healthy snack even though most are loaded in sugar and salt. But all of these pales compared to the gluten-free fad. It is reported that 90 million Americans now follow a gluten-free diet because they believe (despite the lack of research evidence) that it is healthier, or as a weight loss strategy or in some cases to treat extra-gastrointestinal symptoms like a ‘foggy mind’.

Unpacking these beliefs in the course of a routine consultation in primary care is challenging. The belief has to be volunteered and the context understood. The associated behaviours have to be outlined and if there are sufficient grounds challenged without engendering the impression that the health professional does not accept the person’s right to make a choice, even when that choice is dubious or could even be harmful. People have the right to follow a gluten free or lactose free diet whatever their reasons. They have a right to drink too much alcohol and or to smoke cigarettes. However for many such people the consequences may include chronic morbidity and a shorter life expectancy. It is therefore incumbent on health professionals to communicate effectively with those who seek help. This may include demonstrating the outcomes in a creative way. The task is to help people to decide what outcomes they would prefer. However in the first instance we have to understand the ‘why’ as well as the ‘what’ of the decisions they make. That means creating the conditions in which people will feel inclined to share. That only happens when they believe that their perspective as well as their right to choose matter to you.

Picture by Will Temple

What do you want from your doctor?

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Finding a good doctor is like finding a good lover: there are lots of anecdotes but no data Richard Smith

Our family has moved to an new city and we are looking for a family doctor. What would you look for if you knew a little about evidence based medicine? Would you want your doctor to have read the latest medical journals and could quote research evidence for every decision they make? New premises? New furniture? Free wifi? Short waiting times? A coffee machine? Text messaging? Internet booking? A PhD?

How do you choose a new dentist? A new hairdresser? Do you just walk in to the nearest premises and hope for the best? Do you ask your neighbours for a recommendation? Do you google the names you see in the phone book? The chances are you spend more time choosing a restaurant then you do choosing your doctor. And yet there is far more at stake other than a good meal or a hair cut.

For us in selecting a doctor nothing matters as much as the doctor’s interest in our family. Our new doctor may not have read this week’s medical journal but he or she will be curious about our family because they will want to understand the context of any symptoms . That isn’t simply limited to our medical history, allergies or genetic predisposition. It also means the fact that we have moved interstate, we have new jobs, renting for the first time in years and experiencing a number of other life events. They will take into account any support we might be receiving from friends or family and our satisfaction or otherwise with our decision to relocate.

If you feel the same way then you might agree that doctors, especially family physicians aka general practitioners, provide a relationship and not just a service. This is what we seek when we consult a doctor:

Their willingness to make eye contact, to listen actively, to pick up verbal and non-verbal cues, to be respectful  and unwavering in the opinion that our perspective on our bodies and its functioning is what matters the most. To our new doctor we will be free to make choices. They will see their role as adviser and advocate rather than enforcer of what’s best for us as determined by somebody else. The best doctors understand that they may not have all the information on which we make decisions but faithfully realise that we also want what they want i.e. what’s in our best interests.

I love this quote from Anatole Broyard:

What do I want in a doctor? I would say that I want one who is a close reader of illness and a good critic of medicine…I see no reason or need for my doctor to love me, nor would I expect him to suffer with me. I wouldn’t demand a lot of my doctor’s time, I just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness, for each man is ill in his own way.

We will choose our next doctor based on how we feel not what we think. Is that a good thing? It’s not logical, but it’s the only basis on which humans make the most important decisions in life.

Picture by frances1972

What motivates evidence based practice?

Doctor greating patientIt is assumed that doctors will always provide evidence based advice. Evidence based advice will be offered when three factors are aligned- Motivation, Ability and Trigger (BJ Fogg). Looking at the picture, assuming whatever is required is relatively easy to do and there is no problem with the doctors ability, what factors will impact on motivation to provide evidence based advice?

Doctor’s experience of an adverse event- complaint or bad outcome in relation to similar problems.
An overwhelming majority of respondents (91.0%) reported believing that physicians order more tests and procedures than needed to protect themselves from malpractice suits. These views were consistent across a range of physician characteristics, most notably across specialty groups, where 91.2% of generalists, 88.6% of medical specialists, 92.5% of surgeons, and 93.8% of other specialists agreed with the statement (P = .35). No significant differences were seen by geographic location, type of practice, or professional society affiliation. Bishop et al.
Doctor’s experience or training.

Widely used Continuing Medical Education (CME) delivery methods such as conferences have little direct impact on improving professional practice. More effective methods such as systematic practice-based interventions and outreach visits are seldom used by CME providers. Davis et al

The perception that the patient is ‘demanding’ a specific treatment, even if the indications are absent or equivocal.
A total of 4845 discrete items were mentioned as being capable of influencing Family Physicians’ (FPs’) decisions about referral for consultation. Aggregation of related items resulted in a list of 35 nonmedical factors, of which 11 were identified by at least half the respondents and 14 by less than half but more than 10. These 25 factors fell into three categories: patient and family factors (e.g., patient’s wishes), FP and consultant factors (e.g., FP’s capabilities), and other influences (e.g., style of practice). On the basis of both frequency of identification and priority scores “patient’s wishes” emerged as the most important factor.Langley et al.
Payment structures.
The use of financial incentives to reward Primary Care Practitioners for improving the quality of primary healthcare services is growing. However, there is insufficient evidence to support or not support the use of financial incentives to improve the quality of primary health care. Scott et al
Doctors mood.
 82 doctors reported recent incidents where they considered that symptoms of stress had negatively affected their patient care. The qualitative accounts they gave were coded for the attribution (type of stress symptom) made, and the effect it had. Half of these effects concerned lowered standards of care; 40% were the expression of irritability or anger; 7% were serious mistakes which still avoided directly leading to death; and two resulted in patient death. The attributions given for these were largely to do with tiredness (57%) and the pressure of overwork (28%), followed by depression or anxiety (8%), and the effects of alcohol (5%). Firth-Cozens and Greenhalgh.
Time of day.
The researchers looked at the billing and electronic health record (EHR) data for patient visits to 23 different primary care practices over the course of 17 months. Then identified visit diagnoses using billing codes and, using EHRs, identified visit times, antibiotic prescriptions and chronic illnesses. They analyzed over 21-thousand Acute Respiratory Infections visits by adults, which occurred during two four-hour sessions, 8 a.m. to noon and 1 p.m. to 5 p.m. The researchers found that antibiotic prescribing increased throughout the morning and afternoon clinic sessions. Linder et al
Multiple problems presented at the same consultation.
In many health care systems, providers see patients during brief office visits and are overwhelmed by the number of health maintenance activities recommended by guidelines and quality monitoring agencies. When diabetic patients have multiple chronic conditions, screening, counseling, and treatment needs far exceed the time available for patient-provider visits. Piette and Kerr
Cultural factors.
Most clinicians lack the information to understand how culture influences the clinical encounter and the skills to effectively bridge potential differences. New strategies are required to expand medical training to adequately address culturally discordant encounters among the physicians, their patients, and the families, for all three may have different concepts regarding the nature of the disease, expectations about treatment, and modes of appropriate communication beyond language. Kagawa-Singer and Kassim-Lakha
Distractions in the consultation.
The presence of the computer has changed the beginning of the consultation. Where once only two actors needed to perform their roles, now three interact in differing ways. Information comes from many sources, and behaviour responds accordingly. Future studies of the consultation need to take into account the impact of the computer in shaping how the consultation flows and the information needs of all participants. Pearce at al.
Influence of pharmaceutical companies
With rare exceptions, studies of exposure to information provided directly by pharmaceutical companies have found associations with higher prescribing frequency, higher costs, or lower prescribing quality or have not found significant associations. We did not find evidence of net improvements in prescribing, but the available literature does not exclude the possibility that prescribing may sometimes be improved. Spurling et al
All these could be summarised under three headings:
  • What the doctor believes
  • What the doctor hears (or fails to hear)
  • How the doctor feels

Many of these are difficult to influence and therefore innovations that have the greatest effect rarely focus on increasing motivation.

Picture by Vic

Quantified self – the downside

The manufacturers of wearable health tech devices are set to make millions if not billions. Wearables are relatively cheap adjuncts to existing technology. But what difference will they make to the health and well being of the average user?  We have been offered a preview of what these devices can do- monitor your heart rate, blood pressure and blood glucose. Keep track of your respiratory rate, calorie expenditure and sleep patterns. Detect cardiac arrythmias and abnormal brain electrical activity. It sounds good, but so what? If you experience a significant drop or severe rise in blood pressure you are going to notice even before you check the readings- you will feel very unwell. Similarly low blood sugar and dysfunction of the respiratory or cardiac system. Do we really need our smartphone to tell us we aren’t taking enough exercise and eating too much? Or that it’s time to see a doctor urgently? I agree with Jay Parkinson:

The exclusive-to-human part of our brain evolved so we can be creative and manipulate the world around us so we can invent things like the iPhone. And now, the creators of the iPhone want to give us the tools we need to badly do what evolution solved for us hundreds of millions of years ago.

Here’s the problem with this technology in practice:

About 10 percent are “quantified selfers” with an affinity for this kind of feedback; just by looking at the numbers, they are motivated to be more active. An additional 20 percent to 30 percent need some encouragement in addition to tracker data to effectively change their behavior. Kamal Jethwani

Therefore the vast majority of people who buy a wearable device right now will not benefit from that purchase. Those who do, might be amenable to other interventions. Unfortunately much of the data is meaningless or has no impact on long term decisions about health and well being. Sure, a trend in high blood pressure over a few weeks might indicate a need for treatment but a single high reading might be an anomaly or simply confirm that you are excited. Worrying about every little bleep on the chart is not going to add to your quality of life but will detract from it. For a sustained and beneficial change in life style people need more than data. They need motivation and help to workout the benefits of making different choices. They need the undivided attention of a practitioner who understands their needs and assists with a bespoke plan.

Information that we need right now, which our built in human senses may not already have alerted us to is another issue; microscopic haematuria (blood in the urine) proteinuria (protein in the urine), faecal occult bleeding (blood in the faeces), raised intraoccular pressure (high pressure in the eye ball) and changes in moles, breast or testicles will prompt doctors to investigate for sinister causes. Investigations that might lead to the early diagnosis of some costly and treatable or life limiting condition. Acquiring this information doesn’t require you to wear a device continually for a year. The business case for manufacturing devices to do that isn’t as compelling because of a limited market. Enthusiasts for wearables argue that:

Studies are beginning that examine the data from wearables, which is much more granular data about human activity than scientists have been able to access previously. This will answer questions like: how much of an increase in activity, of what type (moderate or cardio-challenging) leads to what degree of health benefit? Todd Hixon

What we may also discover is that there are probably side effects associated with wearable devices. Psychological harm may be associated with prolonged and heightened anxiety and obsession with self. What we won’t discover (and this is a guess) is that there is a short cut to losing weight that doesn’t require any significant effort. We might also discover that there are limited indications for wearable devices and that the market for them is much smaller than we envisage. Parallels exist with some parts of the pharmaceutical industry which has begun to promote ‘illnesses’ that would benefit from it’s offerings. So called disease mongering. We may well find ourselves being circumspect about wearables in the way that we have misgivings about drugs:

…drugs approved for devastating illness, such as clinical depression, are indicated for milder conditions, such as shyness, which is now dubbed ‘social phobia’. Howard Wolinsky

Data is no more the answer to all problems than are drugs. The indications for collecting data have parallels with the indications for prescribing drugs and how and why that data is collected merits thought. Those who promote the use of wearables need to question a trend which isn’t without a downside.

Managing demand for primary care

Why do people consult doctors? At first glance because they feel unwell. However research suggests that the reasons are far more complex than that. Innovators also know that the answer to this question is vital for those seeking an agile, intuitive, creative and cheap solution to the demand for their services. Theories predict the consultation habits of many patients. I especially like this summary:

The overall prevalence of symptoms in the community is not closely related to general practice consultation rates, and the consulting population is a selected population of those who are in need of medical care. The literature reviewed suggests that poor health status, social disadvantage poor social support and inadequate coping strategies are associated with higher consultation rates. Some populations subgroups may experience particular barriers to seeking care. Campbell and Roland

Innovators might also ask why are those patients sitting in my waiting room? I remember a hoary old tale of a doctor who was feeling especially grumpy one day and stormed through the waiting room announcing that anyone who thought they had a ‘real’ problem should stay everyone else should go home- half the waiting room emptied.

It seems quite a few people who go to doctors will have symptoms- however a proportion will be back there by invitation. How big a proportion and why have they been invited back? There are many reasons to schedule a repeat appointment. It conveys the notion that the patient will be harmed if they don’t see a doctor on a given day for one or more of these reasons:

1. Their response to treatment is unpredictable and the dose or drug may need to be revised

2. They have a condition that can’t be diagnosed or may progress or need additional measures by a specified date

However other reasons for requesting a review include:

1. The doctor isn’t confident that the diagnosis is correct and wants a chance to review the advice issued.

2. The patient is required by someone (e.g. an employer) to produce evidence of a visit to a doctor

3. A full waiting room ensures the doctor looks busy for whatever other reason.

4. The doctor needs to reinforce the impression that the condition has been taken seriously.

The time cost for doing everything that could possibly be recommended for patients with chronic conditions  has been shown to be untenable. Either the guidelines are wrong or a different solution needs to be found for at least some of these people. What is the evidence for asking a patient to return within a week or two with a specific new condition and within a month with a longstanding condition?

There is a need to be proactive in some cases. However is it possible that we encourage people to attend for review appointments when there is a low probability that they will benefit? Are there other reasons to fill the waiting room?