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Should Patient Involvement and Engagement Have Minimal and Maximal Limits? A Perspective From India
J. Mariano Anto Bruno Mascarenhas
Madras Medical College
Tamil Nadu Government Multi Super Specialty Hospital

ords and phrases like “Patient Involvement,” “Shared Decision Making,” and “Engagement” are trending in various medical conferences and journals, and most stakeholders seem to consider them to be the next logical steps in informed consent. Non-governmental and other organizations aggressively push them. Clinicians and administrators are forced to believe that these concepts will work Magic in their hospitals, from reducing the attacks of disease to improving patient satisfaction to growing revenues. All looks so rosy and good.

But do we forget a cardinal principle in medicine? A drug can be a “poison in the right dose” and a poison can be “a drug in an incorrect or overdose.” Anything, from water to common salt or sugar, can damage and even kill a patient when more than needed is taken. Even oxygen can cause toxicity. Isn’t it time to discuss the following pertinent questions?

  1. What are possible toxic effects of “Patient Involvement,” “Shared Decision Making,” “Engagement,” and related terms?
  2. What is the optimal dose of these concepts or phenomena?
  3. If we keep on increasing doses of “Patient Engagement” and related terms, what harms could befall us?

Rights of an Airline Passenger

To illustrate, let’s assume that I am flying from Chennai to Delhi. As a paying passenger, I have many rights: (1) Right to Choose, (2) Right to Safety, and (3) Right to Information.

I have the Right to Choose which airline, which departure time, which flight class, which seat (front or back, window or aisle), and which food (vegetarian or non-vegetarian). I can reasonably expect the airline I choose to follow safety standards and transport me safely from Chennai to Delhi – the Right to Safety.

I also have the Right to Information, the right to know such things as the correct gate and terminal for my flight, how much luggage I am allowed to take, where I will find my luggage after I land, how to put on my safety belt, and what to do in case of an emergency.

But my rights end there. Flying does not give me the right to decide, for example, which route the flight should take, the runway the flight should depart from, how much fuel to carry, or the speed of the flight. It is not reasonable for me to expect the pilot to ask my permission for each turn or to jettison the fuel. These are all decisions that I do not have the requisite technical expertise to make.

In short, while being a passenger gives me a lot of rights, it still does not give me everything I demand or like. Even though I pay for my ticket, being a passenger does not allow me to sit in the cockpit and meddle with controls. Even though it is me that the pilot is transporting, being a passenger does not permit me to ask useless questions of the pilot or cabin crew. Being a passenger does not give me a right to demand three flights from my own hometown. Even if I am over-eager because it is the first time I am flying, being a passenger does not give me a right to ask the cabin crew to explain everything to half a dozen relatives and friends. And being a passenger does not give me the right to be rude because I am stressed.

Rights of Patients

Airlines have clearly delineated the rights that a passenger has and does not have. The limits to these rights are clear and distinct. But when it comes to patients and hospitals, it is often assumed that Patient Rights extend to everything and that everything they demand is right.

And since this line of where patient rights begin and end is not clearly fixed, it can often create confusion and apprehension. While asking the opinion of patients is essential, it is also imperative to know where and when to stop. A patient’s opinion may be important, but only to a certain level. In the same way, allowing patients to choose their own treatment should be done with caution and not so the consulting clinician can simply absolve themselves and say, “You chose this treatment, not me.”

While patient education can be most important in issues like diet, exercise, and other lifestyle modifications, time that might be used to positively impact another patient must not be wasted in explanations that have no real impact on patient care.

Doctor-Patient Dynamic in India

Limiting rights is even more relevant in a country such as India where the doctor-population ratio is so widely skewed and doctors have less time to allocate to one patient. A doctor in a primary health centre typically handles more than 100 outpatients per day. Even in medical colleges, specialists and super-specialists handle a minimum of 50 outpatient clinic patients each day. Moreover, there is no appointment system and all patients who arrive must be examined that same day.

When we define the limits of patient rights, we must take into consideration the unique features of Indian hospitals. If they come to the hospital, Indian patients are given the right to consult any specialist, from a cardiologist to a neurosurgeon, on that same day. This right is non-existent in most Western nations.

Another unique feature of the Indian healthcare system is the side-by-side availability of public and private hospitals. Patients often expect less in countries where healthcare is predominantly delivered by government hospitals. But in India, patients expect the private level of care from government hospitals. Returning to our previous analogy, patients often expect business class features for economy class payments and when they don’t receive these features, they allege negligence. Similarly, patients often expect to pay government hospital prices for private hospital care (expecting to pay economy class fare for business class service) and when they do not, they allege corporate greed.

Counterbalancing Rights and Duties

It is imperative that these nuances of healthcare service, cost, and value, be explained to and understood by the public in India. When additional rights are given, some other right must often be foregone or reduced. Rights and duties are two sides of the same coin: Patient’s rights are the doctor’s duty and the doctor’s rights are the patient’s duty. There must be balance. Infinite rights on only one side will unbalance if not collapse the system very soon, and this is an abyss into which Indian healthcare is spiralling.

Defining minimal and maximal limits for each and every disease or each and every specialty therapeutic area is beyond the scope of this article. Moreover, such limits cannot be fixed: It will be a range that depends on the doctor, the patient, the hospital, the situation, and other variables. For example, the scope of patient involvement, shared decision making, and engagement in the case of a patient who was asymptomatic but had ischaemic heart disease detected in a routine follow-up visit will be vastly different than the case of a patient who had acute onset myocardial pain and was developing breathlessness.

But the point of this article is to emphasize the fact that such limits exist and that it is time for doctors, patients, and society in India to understand this point. Defining these limits will be the logical next step.