When doctors and caregivers do not help patients make the best decisions

The doctor patient relationship in Singapore is changing.

In decades past, it was typically the doctor who made treatment decisions on behalf of patients, sometimes with input from the patients and/or their families, and sometimes without any input at all.

Now, partly due to the threat of litigation, shared decision-making is increasingly the norm.

Shared decision-making involves information sharing between doctors and patients and/or the patient’s designated surrogates in efforts to come up with an appropriate treatment plan.

This sounds like the ideal strategy for how medical decisions should be made.

However, shared decision-making inherently assumes that patients are capable of taking in complex information from healthcare providers, often at a most vulnerable time in their lives, and then synthesising that information to make rational treatment choices.

It also assumes that their family caregivers, who are major influencers in healthcare decisions, are acting in the best interests of the patient.

There is both theoretical and empirical evidence suggesting that these assumptions are unlikely to hold, and the consequence is likely over-treatment, sometimes with high cost and only marginally effective medical care.

Why do I say that?

First, evidence shows that subtle differences in how information is presented can change the value that patients place on a particular treatment.

For example, in one study, patients with chronic medical conditions were asked to choose between an invasive surgical procedure and less invasive radiation therapy.

For half of patients, information was presented positively in terms of “chances of survival”, and for the other half, the framing was more negative and presented as “chances of mortality”.

Everything else was identical. Yet, when outcomes were presented using the positive frame of survival, 75 per cent chose the more risky surgical treatment, whereas this choice dropped to 58 per cent when outcomes were presented in terms of the negative mortality frame.

A systematic review of similar studies shows that patients are 1.5 times more likely to choose riskier treatments when treatment efficacy is presented in terms of chances of survival than when presented in terms of chances of mortality.

Other research reveals that how patients are feeling at the time a choice needs to be made will influence that choice.

Visceral factors such as pain, depression, anger, and even hunger influence treatment choices.

Another consideration for patients concerns which treatment is presented as the default or standard treatment.

Patients are much more likely to choose a treatment that they believe is the standard one, and this holds even in cases of life and death treatments.

Not only are patients likely to be unduly influenced by how information is presented, but they also have a propensity to be overly optimistic about the chances of success of a given treatment, even when presented with accurate information.

Research shows that optimism bias is very common across all gender, race, ethnicity, and age groups but becomes most pronounced when patients are faced with little hope in the absence of a treatment, as is the case for those with life limiting illnesses.

Cognitive biases are only one problem with shared decision-making. The influence of the physician raises additional concerns.

‘Power distance’  is defined as the degree of inequality existing between the less powerful and more powerful members of society.  

Few relationships have greater power distance than that between doctor and patient.

Therefore, even if a patient correctly interpreted the risk information and wanted to make a decision that differs from the doctor’s recommendation, he may be hesitant to voice that opinion.

Power distance is not limited to interactions between doctors and patients.

Shared decision-making, especially for patients with life limiting illnesses, often incorporates input from family members.

Both doctors and family members tend to have a greater preference for aggressive treatments than patients.

Doctors may push these treatments for myriad reasons, including financial benefits.

Families tend to push aggressive treatments partly to avoid any subsequent feelings of guilt and/or because they want to be seen as doing the right thing on behalf of the patient.

WHAT CAN BE DONE?

My colleagues and I have been exploring a number of these issues in the local context, most recently focusing on elderly end-stage renal disease (ESRD) patients.

Singapore has the fifth highest incidence of ESRD globally, and rates are increasing due to rising rates of obesity and chronic disease.

Elderly ESRD patients can choose between haemodialysis (HD), which takes place in a dialysis centre, or peritoneal dialysis (PD), which can be performed at home, but on a more frequent basis.

They can also choose to forgo dialysis in favour of conservative management (CM), also termed comfort care. For many elderly patients with comorbidities, this is a reasonable alternative to dialysis because of a lack of a clear survival advantage of dialysis.

CM patients also experience lower rates of hospitalisation, pay lower costs, and a similar health-related quality of life.

Despite these statistics, many elderly and very sick ESRD patients go on to receive dialysis. When exploring the reasons for this, we found that they are consistent with the discussion above.

For example, 40 per cent of patients surveyed reported not being aware that CM was an option.

Others could not provide any information on expected survival for dialysis or CM, or whether survival differed between the two.

Yet, caregivers far over-estimated the survival benefits of dialysis, thus encouraging them to promote this option.

One patient reported not wanting to undergo dialysis, but finally gave in after a long period of persuasion by his children, who “cried and kneeled down to beg him” to choose this option.

Both patients and caregivers reported that they were highly influenced by physician recommendations.

Among respondents whose initial preference was not for dialysis, 49 per cent of patients and 68 per cent of caregivers stated that they would switch their choice to dialysis if the physician recommended it.

One patient said: “Who am I to say anything? I am not a doctor.”

Interestingly, if information deficits, biases, and the push for treatment by doctors and family members are a significant problem, we would expect to see high levels of treatment regret among patients.

Once patients experience a treatment, they would have a sense of whether it was right for them. Therefore regret can be considered a marker for the quality of shared decision making.

When it comes to dialysis among Singapore’s elderly, we do not find high levels of regret.

Most elderly patients we surveyed (81 per cent) reported no regrets with the decision to undergo dialysis, a proportion (11 per cent) reported ambivalence, whereas 8 percent reported outright regret.

So what are the implications of the above?

First, it suggests that shared decision-making is not for everyone.

There are many patients who would be happier to leave decision-making to their doctors or family members, even if the ultimate choice may not be what they would have chosen for themselves.

In other words, for some patients, the prospect of overtreatment is better than autonomy. And for these patients, this choice should be respected.

Yet, many patients stated a preference to be involved in decision-making.

For these patients, we recommend incorporating de-biasing strategies and patient decision aids to better inform them.

These aids help to improve knowledge transfer and promote patient engagement in healthcare choices.

They are not a substitute for clinical communication, but help to prepare and empower patients and their families for shared decision making.  

Randomised trials find that decision aids increase patients’ knowledge regarding their disease, and lead to less decisional conflict, higher satisfaction with decision making, and less decision regret.

We also recommend use of third parties, such as social workers, nurses or patient navigators, who can act as information brokers and provide relevant information in a neutral and objective manner, thus helping balance the power distance among all parties.

Finally, we recommend increased review of appropriate use of high cost medical treatments, such as dialysis, to ensure that guidelines for appropriate use are clear.

Singapore’s Agency for Care Effectiveness is increasingly taking on this role. Physicians would benefit from greater guidance on what represents the best use of these technologies.

In conclusion, shared decision-making sounds great in theory, but is fraught with risks that are likely to promote excess medical care, especially for those with life limiting conditions.

Efforts should be made to minimise these risks, with the goal of helping patients or their caregivers make decisions that patients are least likely to come to regret.

ABOUT THE AUTHOR:

Dr Eric Finkelstein is Director of Lien Centre for Palliative Care and Professor of the Health Services & Systems Research Programme at Duke-NUS Medical School.