Why are patients dissatisfied with medical care ?

 

Papers are full of news and headlines of the dissatisfaction of patients with health care. Why does this happen? I am not being judgemental on any one issue, but want to share a fundamental truth about modern medical care.

It is really worth listening to a TED talk by Kevin Jones .

We all assume that medicine is an “exact science”. Even science itself is not “exact and always true”. Some of the biggest principles of science like Newtonian physics had to give way ;to Einstein’s theory of relativity and then later on to quantum physics. So nothing is an absolute truth even in pure sciences like physics and medicine is far from perfect.

In actual practice, we treat based on some evidence. Most robust evidence is by a clinical trial or trying a therapy or a procedure ,which would be useful in a majority of patients. The important word here is “majority”. Typically a bell shaped curve in which the middle segment of majority would benefit from the treatment. But within the same population are those who are outliers and who are not part of the majority and this number can be as high as 30% or sometimes even more. So the benefit is limited only to those who are within the median.

So every medical treatment in some way, as the author says, is an experiment. It may be tough for any patient to accept that he is part of an experiment but it is a journey undertaken both by the doctor and the patient. So actually it is a contract, a contract between a doctor and the patient. The doctor explains the limitations of the treatment he is proposing and the patient also understands and accepts the limitations.

In our field of cancer surgery, almost every patient asks me “Can you guarantee me that the disease will never come back?”

Of course I can’t guarantee. Most of the time we don’t even know why it has happened for the first time. So one has to understand that while in a particular stage, like stage 1 or stage 2 there can be survival of 80-90% but still there is a 20% who will have an adverse outcome. As on today we may not be able to predict which patient is going to remain well and which patient will have problems. This is true of every single cancer treatment.

Now coming to other surgical procedures. Yes, surgical procedures do have their risks. There is no surgical procedure which can be done with zero risk. One has to balance what is the risk of the disease versus the risk of surgery. Modern surgery has a risk of 5% or less in most of the major procedures and it is a lot more safer than before of a lot more complex surgeries which includes not only major cancer surgery, cardiac surgery and transplants and even complicated bariatric surgery but none of the surgeries can be 100% risk free.

Many times the patient expects the answer that “no, there will be no risk and yes, he will be 100% free of the disease” . That is what he wants to hear. Even when the explanation is to the contrary he will go from pillar to post. Today I had a lady who had already seen three doctors, two of them advised that she will need a procedure with a stoma and one surgeon said he will not do a stoma. So obviously the patient is a bit confused.

We have to tell what is a realistic expectation. I think most of the time the patient partly understands it or does not want to understand.

In all the situations, there is obviously a huge gap between the expectation and the result.

One may say that after bariatric surgery, losing 300 kgs. is a remarkable achievement, but one may even argue but that does not solve the problem of other issues, like inability to walk, etc.

What is the real answer? The real answer is that every single treatment is a contract between a doctor and the patient and each of the parties should take a decision based on certain facts and will accept that there are likely to be deviations from the norm. They have to be accepted as part and parcel of the treatment.

Till then, adverse news in headlines will continue.

 

Why me?

 

Almost every day I am asked this question by my patients – “Why Me?”

“I have no habits, I do not drink or smoke, I am still young and need a full life.”

“Why Me?Why should I get this disease out of the blue.”

Well, I think there is no real answer and I keep searching for the answer for myself.

I regularly read Om Swami’s blogpost which are practical and pragmatic. Lot of people obviously ask the same question to spritual teachers also. Why me ? Why should I have misery in life or unhappiness or broken relationship.  He addressed this very well in his blogpost.

I think the most powerful quote of the blog is by Arthur Ashe. Arthur Ashe, the tennis legend and a gentleman, during coronary bypass surgery, had blood transfusion and unfortunately developed HIV because in those times the testing was not done. Finally when he was succumbing to the illness, he had  great strength and wisdom to take that calamity also in his stride.

Arthur Ashe :

“The world over – 50 million children start playing tennis, 5 million learn to play tennis, 500,000 learn professional tennis, 50,000 come to the circuit, 5000 reach the grand slam, 50 reach Wimbledon, 4 to semi final, 2 to the finals.

When I was holding the cup I never asked GOD ‘Why me?’.

And today in pain I should not be asking GOD ‘Why me?’ ”

It is so important for all of us to remember that when we are successful when we get awards, medals, good jobs and all the luck, we never questioned ‘Why me?’

We assume that yes, this is what we have earned, what we deserve as we worked hard and and some luck which also favours those who are brave.

But as soon as there is some calamity or something bad happens, you question ‘Why me?’

So there are no real answers to this, as ups and downs are perhaps part of life. Yes, you will have many many good days, good years in the run and suddenly something bad happens and that is how life is. Indian philosophy has a profound explanation- Karma. If it helps , then believe.

So stop questioning ‘Why me?’ Life is not always a bed of roses. There are thorns too.

Yes, it is a most difficult test of your life test and we HAVE to pass the tough examination.

 

 

 

 

 

 

 

Beware of sudden deterioration of ‘diabetes’ and loss of weight

 

Recently a colleague of mine frantically phoned up saying that someone who is very close to him has to be seen by me. The patient was a mild diabetic and recently his sugars shot up. He was then taken to a diabetologist who started him on  insulin dose. Then he started losing weight and in the next 4 months he lost 4 kgs. The diabetologist opined “It is because of control of diabetes and it is good that he is losing weight”. However after his sugars came to near normal he continued to lose weight and he lost 4 kgs over the next 3 months by which time there was a sense of urgency.

It was then that he underwent CT Scan and was found to have pancreatic cancer which was inoperable. My colleague was devastated, that inspite of availability of medical expertise diagnosis was delayed.

This is not unusual. It is very important to remember that sudden deterioration of diabetic status suggests either ‘infection’ or ‘tumour’. It is very important at this stage to get a scan done so as to rule out the presence of tumour. Early diagnosis is most important for management of pancreatic cancer as surgery remains the only most useful treatment.

Once again I have to re-iterate that weight loss is not to be taken lightly and any significant weight loss has to be investigated thoroughly including a scan.

‘Be aware’ of anaemia or Low hemoglobin

 

Jai is a regular donor to our Foundation. He is one of those who donates every year without asking. This time he came with a cheque earlier than ;usual and I asked him, “you normally would put in a cheque in March.” He said, “No, this is from my wife. Whenever she wins a kitty party she donates the whole amount to CACF. This is a remarkable way of using kitty money rather than on clothes or fancy things.

I asked Jai who is a businessman the sequence of events that led his coming for surgery. He is already 3 years post-surgery and doing well. Obviously he could detect the disease early and this is his story….

“I am part of the walking club and every morning I go walking for 60 min on Carter road but slowly I started becoming slightly breathless. My friends used to jokingly say that I am getting old and unable to keep up with them. I really could not keep pace with them. I started becoming breathless whilst walking up a flight of stairs too. Initially I thought its because of my heart but my ECG, everything was normal. I went to my general physician who ordered usual tests and to my utter surprise haemoglobin was just 8 gms against normal of 12 gms. So obviously I was feeling breathless because not enough oxygen was being carried by low haemoglobin. This started a series of investigations and fortunately my general physician got a scan done which showed mass in the colon and subsequently endoscopy confirmed Colon cancer and I came for surgery.”

This is a very important story and also brings out a valuable point on being aware of some of the signs and symptoms and taking necessary action on them.

Anaemia or low haemoglobin is one of the classical presentations of gastro-intestinal cancer and it should not be taken as lack of iron or nutrition or due to any other cause. Many times anaemia can be manifested by just tiredness, weakness and breathlessness. Once anaemia is detected it NECESSARY to have a sonography or scan done which can pick up any lesion. It is also good to test the stool for occult blood. If occult blood is positive in any of the 3 samples, colonoscopy or endoscopy are warranted. In this way we are can pick up GI cancers very early.

The best part about GI cancers is that when detected early they just need surgery and good surgery will ensure a long time survival. Most of them, nearly 90%, survive for 5-10 years. Even chemotherpy can be avoided.

So just be aware of these symptoms. The symptoms should not alarm you but should alert you for investigations.

Take care of your health.

Wear blinkers and run the race

Just imagine a horse running a race… the blinkers are put on

The literary meaning of blinkers is “a pair of small leather screens attached to a horse’s bridle to prevent it seeing sideways and behind and being startled”.

The analogy cannot be better.

The moment someone is diagnosed with cancer, unsolicited advice pours in from all corners. Right from sugar free diet to herbals, nature cure, toxic effects of chemotherapy and stories of how their relatives had pain etc. There are very few encouraging voices. Sympathy can overpower you and you don’t need it.

I always advise the patients, ‘just imagine that you are running the most important race of your life’. Don’t lose hope. Don’t allow people to discourage you. In fact ask people to mind their business. You have to attend to the most important business – your health and your life. NO free advice please. If anyone still wants to offer advice send them to me , I will handle them.

Put on the blinkers, don’t look look sideways or behind and don’t be startled by all the noise. Just look at the finish line and run wth all your might

YOU HAVE TO RUN AND WIN !

 

 

 

Good ‘Old’ generation!

 

Yesterday was a very interesting day. I saw 4 patients who are over 70. When I started my surgical career, more than 3 decades ago, we had a fairly unwritten rule that above 50 years be careful and after 60 avoid risky surgery. Some of the major surgeries which we performed on the younger patients were not offered to the elderly patients as there was a fear that there would be some complications and they would not be able to stand the complications.

In the west it has been proven recently that even older patients have the same kind of resistance and power to heal  and tt does not really depend on the age.

‘Physiological age’  is more important than the ‘Chronological age’

Mr. Mehrotra came into my room with a spring in his step. The first thing I asked was “Are you really 79”? He said, “Of course I am 79 and I even have great grandsons.”

I generally do not base my assessment on the biochemical values or numbers.

So I asked him “What do you do in a day and what time do you get up in the morning?” He said, “I am up by 5 in the morning”.

“Oh, and then ? “.

“I go for a walk for about an hour”,

I asked, “how much distance” and he said, “about 5 km.”

(I said to myself “I don’t do that”)

He said, “then I come back and may be have some juice and fruit, a bit of yoga and then I have my breakfast”.

I said, “Fantastic routine, what else do you do, can you go up a flight of steps?” He said, “of course I can because when I go for a swim in the evening, I do go up and down the steps.”

So I said,”oh oh, that means you swim also?”

He said, “of course I swim or go to the gym.”

Well this man is certainly great, at 79 he is fit and is definitely not overweight. I look at the people who came with him, his nephew (who well certainly looked pretty uneasy with the whole conversation) because it was clear that he never walked, forget about gymming and swimming and he was easily 10 kg overweight.   I had to do a major liver surgery for him so I said, “there is a risk in surgery”, he said, “so what, I am ready for it.” I think it is not only the physical fitness but also the mental attitude of the older generation which is remarkable.

Second gentleman was again 75, the same story except that he does not gym and does all the things which normally should have been done by someone who is much younger than him.

I had no hesitation in clearing both the patients for both liver and pancreatic surgeries respectively. Yes, there are some risks involved but it depends on how you take care of your body.

Then came a 75 year old whom I had operated upon for rectal cancer. He said, “doctorsaab, can I go for my walks?” I said, “of course, you can.” He said, “what about the treadmill?”

( Oh, I also have a treadmill but I do not seem to be using it much).

“Yeah, why treadmill, why not just go for a nice walk in the lawns or outside?”

He said, “yes, that I do everyday, I used to do for an hour but now it is 1/2 an hour, but in the monsoon season, if it is raining, I still want to do my exercise and that is why I am asking if I can go on the treadmill”

I said, “of course you can do it but just be careful”.

So, in short, when I look at the older generation it is so enlightening. They are right in front of us- they take care of their health. Their physical fitness is far far better than the younger generation. In fact, I feel that the ‘father’ coming from a small town will do far better than the ‘son’ who is a busy executive in the city. In small towns and villages the people have to walk, there are no fancy cars. They have fresh vegetables, fresh produce, plenty of clean air and certainly they are far healthier than their city bred sons who are either stressed out, stuck in the traffic, no exercise and plenty of excuses not to do so.

Are we going to see a kind of reversal of the longevity which we have achieved over the years and have younger people having lifestyle related diseases in their prime. May be yes, unless we take quick corrective steps. There is no great science involved in this. Just see your father. Ultimately it is the genes which determine your own health and see your father and follow his habits and that itself is going to make you a healthier person.

Old is gold is a saying which is worth remembering every time. It is so true!

 

 

 

 

 

 

 

 

 

 

Giving voice to those who cannot speak ! Vocalizer for patient

 

vocalizer

Long ago my uncle, a neuroscientist was admitted in the ICU with a blood clot in the brain. He was alert but had to be on ventilator. He was desperate to communicate with his family and relatives. My father was anxious to know what was in his brother’s mind. There was no way of knowing whether he was in pain or wanted to meet his son and many other questions.

This happens everyday in the ICU for many patients with an endotracheal tube . Intubation involves placing a tube in the throat for breathing which takes away the ability to speak but the mind is still alert as many of them are conscious. It is also true of post surgery cases as normally after a very major surgery, on the first post-operative day, the patient is on ventilator and is perfectly conscious.

How does one communicate in such situation?

Writing with all tubes dangling is difficult and the handwriting is hard to decipher.

It’s difficult to see them struggle just to say “ I am feeling cold” ( ICU for some reason is kept cold at 180 C).

We were thinking of a ‘touch activated figurative communication’ program. None were available.

Fortunately I could identify Tata interactive system who are the leading developers of learning solutions. With the help of ICU feedback from Dr Sanjith, we set out with a set of common requirements and the touch sensitive visual icons. The patient could communicate his simple requirements on his personal needs, medical care and also communicate with the family.

Vocalizer for patients is a free app available both in android and iOS platforms. It may be downloaded on a tablet and used for communication by your near and dear.

Not only in the ICU, it is also useful in situations where elderly cannot communicate effectively or have some other issues like tracheostomy or inability to speak due to neurological disorders.

This was funded by ‘Crusade Against Cancer Foundation’ as a social initiative. This will be improved further by adding more language options.

Hospital ICUs would serve patients better by just enabling ‘vocalizer on tablet’ and also displaying a notice in the ICUs.

Hope to make a difference !