Indians are surely living longer, but the question is, are they living better lives? I hope I can address this issue in this article, in the best way possible.
As a respiratory physician dealing with chronic lung disease, I deal with this issue almost every day in clinical practice, and I have come to the conclusion that there are no best answers here. A lot of the care our elderly patients receive is not based on what they want or is probably most appropriate for them, but on; a) what they can afford, b) what their relatives/GP(General Physician)/specialist decides or advises, and c) what expertise in supportive/palliative care is available to them in the city they live in. Let us discuss how these issues pan out in India:
What they can afford
Sadly, though economics plays a very important role in our lives, this is hardly the best indicator of what care the patient should receive. A lot of my patients believe that the more they can pay or afford, the better the care for their elderly relative will be. Some elderly patients also believe this – possibly stems from basic lack of knowledge about end-of-life care in their primary care physician (GP) and unwillingness to accept that money cannot always buy better care.
Time and again, I have seen patients spending (without any counselling by their physician) almost 90% of their healthcare expenses of their entire life, in the last few months of their life – and not towards a better quality of life – rather a life spent in and out of ICUs (Intensive Care Units), with frequent blood collections, frequent investigations and procedures, isolation from relatives, and away from home.
‘I wish more people realised the misery of everything’ is what Jeff Gordon has beautifully explained in his book A Death Prolonged. Everything that an hospital can do for a patient may not necessarily be synonymous with an increasingly comfortable state of life. It is this crucial part that elderly people (and especially those with chronic progressive disease) need to understand well, and both those with and without adequate resources.
What their relatives/GP/specialist decides
More often than not in India, I have noticed that it is another family member that takes the decision for the patient. Patients in India are often shielded from an adverse diagnosis or prognosis. “Daddy just won’t be able to take it, doc” – this implies the son is able to take it (which most often the case is not), and an increasingly suffering, ignorant patient (in this case the father) is kept completely in the dark about adverse disease and prognosis. As the illness progresses, hard decisions like chemotherapy in a cancer, or invasive ventilator usage in chronic lung disease become increasingly difficult for that son to take. Most such decisions land up being taken outside an ICU door – hardly the place to discuss end-of-life care.
The physician can play a crucial role here. A long-trusted GP or specialist can play an important role in discussing end-of-life care with patients. The problem is how often do patients actually want to discuss this. Many GPs shy away from such discussions because of lack of formal training in doing so. Likewise, many specialists too. Specialists in some studies have shown reluctance to discuss these issues with responses like, “Too little time during the appointment to discuss everything” or “I worry that discussing end-of-life care will take away his/her hope”.
But this is not the case with all patients and their relatives. Often, when a patient has had family members or friends who have died, and/or trust their doctor implicitly – not just to take care of their disease, but also care for them as a person, research has shown the patient is far more receptive to such a conversation. As an elderly patient it is important to get into a conversation with a doctor you trust (and who knows you and your chronic ailment/s well enough) to help you take these decisions, or (if you wish) take these decisions on your behalf.
With increasing corporatisation of medicine, this may not always be the right route to follow. It is only too well known how corporate hospitals expect newly appointed specialists to ‘fill’ their hospital beds. Young specialists (and sometimes even older ones) succumb to such pressures from hospital administration, and admit patients with little chance of survival or a meaningful quality of life ahead, to ICU. Result – a very sick person with a progressive disease can get admitted to ICU – stay there for days to weeks, isolated from his family and friends – suffer a fair deal of expensive tests/drugs, and procedures (and their associated side effects), and actually get discharged from ICU with a far poorer quality of life, only to get re-admitted and die a few days or weeks later. I don’t believe we have contributed much to the well-being of such patients as physicians, and need to hold ourselves responsible for actually contributing to a further deterioration of their quality of life.
Expertise in supportive/palliative care
Which brings us to the burning question – if we don’t admit such patients to hospital when they are suffering, for various tests and procedures, then what do we do ?
Answer: Palliative Care
The tragedy of palliative care across the world is simply its non-availability when it’s needed most. The United Kingdom excels in the delivery of palliative care with about 15 palliative care clinics / million population. In Mumbai, I am hard-pressed to find even one, especially in the private sector. The Tata Memorial Hospital boasts of an excellent palliative care centre, but how many of our private patients would agree to visit a cancer referral centre for non-cancer palliative care?
A lot of end-of-life care is about palliative and geriatric care. Life expectancy in India has significantly increased over the past couple of decades, and we see an increasing number of 75 plus patients coming into clinic. Some of these with active lifestyles and minimal disease enjoy good health, but many have seen a close peer die in ICU, or have had relatives dying of chronic disease. These patients often endear to discussions on end-of-life care. The other group consists of less active patients with one (or often more than one) chronic disease. These patients need pro-active end-of-life discussions with their physicians, either self-started by themselves or by their physician. We increasingly tend to do this for our chronically ill respiratory patients, and the Bhatia Hospital in Mumbai is soon to commence a non-cancer palliative and support care clinic for elderly patients led by a respiratory physician and psychologist, and ably supported by the physiotherapy and diet departments of the hospital. The purpose of such a clinic is to ensure that patients are heard out on their concerns with advanced disease, and how they would like to better manage their disease and its symptoms moving forward, how to avoid hospitalisation as far as possible, how to be more physically active (which directly correlates with a better quality and quantity of life), and how to eat better. All these components are critical to the overall improvement of health in this patient population. Anxiety and depression are extremely common in elderly patients (in fact depression is the commonest cause of weight loss in an elderly patient) – no surprise that a psychologist is always part of our initial consult.
Conclusion
The very elderly patient takes time to enter the clinic room, often finds it hard to hear what the doctor is saying, is often unable to lie down on the examination couch easily, and takes an extra few minutes to leave the clinic room. He or she is often retired, and (often) in India dependent on a family member for his health care expenditure. Little wonder that most physicians in India (and across the world) shy away from geriatric and palliative care. No exciting procedures to do, no cutting edge technology to use, no new drugs (with possible side effects) to try, and no time to communicate to a half-deaf patient.
All it requires is understanding the simple and often neglected needs and priorities of the elderly patient. A bit of patience and sharp, focussed communication. A gentle hold on the often painful osteoporotic hands. We have the people in India to do it.
We just need more responsibility as physicians towards our elderly patients, and certainly more commitment.
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Dr. Sujeet Rajan
Dr. Sujeet Rajan is a Respiratory Physician at Bombay and Bhatia Hospitals in Mumbai.[/column]