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.

 

 

 

 

 

 

 

Challenging the Conventions in Cancer

On World Cancer Day but I thought I will share a few ‘contrarian’ thoughts :

Facts :

  1. Cancer incidence is rising
  2. We are not making great headway in management of cancer so overall cancer mortality remains nearly static inspite of trillion dollar spend
  3. We have to discard the current conventions and adopt a different approach

On the basis of this, l challenge some conventional concepts to start thinking for alternate strategies.

1) Bigger surgery is NOT better. 

This is a concept which has been challenged, thanks to surgeons who were keen observers who collaborated with their pathology colleagues and came to the conclusion that removing large chunks of tissue around the tumour would not be necessary. This led to less mutilating surgery.  Classic example being breast surgery in which William Halsted, the pioneer, proposed the Radical Mastectomy with removal of muscles.  Even without the modern chemotherapy or radiation therapy came the modifications involving less

aggressive surgeries.  Yes, there was a time  ultra radical surgeries were done but soon surgeons realised that it is unnecessary mutilation and resorted to more organ preservation techniques.  The same thing also happened in rectal  cancer surgery, where without having a permanent bag or colostomy, normal on using basic common sense and good pathology normal passage could be restored.

2) Population screening is NOT necessary – mass screenings is not an answer for early diagnosis because there is no way a population based screening can be done in a country of 1.2 billion people and this will lead to a lot more false positive results and lead to a panic amongst people.  Then, is there any answer for this?  I would again urge a selective screening.  It doesn’t matter if a mammography detects a breast lump or a woman detects a breast lump after a little while at a 1 cm. or 1.5 cm. site.  It is not a late detection. Likewise many of the tumours can be detected early if only we are aware of our body.  That is the fundamental approach.  We should be aware of our body and any change to be noticed and medical attention sought.

Selective screening is the mantra

3) Randomized trials in drug treatment  are NOT way forward

     This is the biggest hurdle for progress and also it is the most expensive part.  Do you know that 90% of the randomized trials are neither   conclusive  nor have been completed particularly if you comparing Drug A with Drug B. It is a total waste of resources and giving a false hope to patient recruited.  Drug companies spend millions of dollars on trials and obviously the cost of drugs, get passed on to the hapless patients.

4) Targeted therapy is NOT a miracle 

      Targeted therapy in  limited instances has been helpful, rest of the time it has proven to be of marginal benefit and extremely expensive and also many times, toxic.  So, chasing these targeted agents is the biggest myth. the intelligence of a cancer cell is far superior that that of a drug company and it immediately changes into different pathways which no longer are inhibited by the expensive chemotherapy drugs.  So let us stop  this chasing these targeted agents and stop doing these trials which have marginal benefits.

5) Genetic testing for every cancer is NOT necessary

The full page ads on gene testing is marketing gimmick without a scientific basis. I have not come across a single patient benefited by so called personalised treatment as the number of active drugs same few whatever the profile may say. The long reports have no value in practice.

Now that brings us to the big question – Do we spend the money on advanced cancers with diminishing returns or early cancers.  Answer to this is obviously early cancers. 

So stop investing funds on chemotherapy and targeted therapy.  It is much better if we can only develop diagnostic techniques which are less invasive or non invasive which will detect cancers which are not symptomatic and that will be the biggest shift to bring us closer to reducing mortality in cancer. 

As long as there is civilization, cancer will exist.  The only thing we can do is reduce the deaths from cancer. 

A selfie that can save you

Mr. Brahma Rao, a bank executive noticed a small ulceration on the border of his tongue. He was not a smoker and never chewed tobacco. He thought perhaps she has injured his tongue by teeth bite and continued with normal activities. After nearly 4 months he suddenly noticed severe pain in his right ear which alarmed him and the ulcer also had increased in size. He was worried and contacted me. As he was abroad and visiting his family and was due to return, I asked him to send me the pic of the border of the tongue like ‘a selfie of the tongue’ which he did.

tongue-pic

It clearly showed a small 1 cm. ulcer and the edges were elevated. It is a very important symptom and sign as lesions on the tongue having what is called ‘referred pain ‘ of the ear is because of nerve infiltration. I diagnosed him as early tongue cancer and he underwent treatment. Fortunately there was no spread at all and he recovered very well.

 

It is an important pointer for all. The tongue is so visible and can be easily seen and felt. Any kind of nodule or ulcer or nodule that is persistent for more than a month is not to be taken lightly. Tongue cancer is painless and has referred pain to the ear. In vitamin deficiency or an aphthous ulcer is more painful, superficial and small.

It is easy to document by a pic and sent to a doctor.

Ultimately you are responsible for your own health and sooner the diagnosis, the safer you will be.

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.

Can anyone ‘sense’ cancer?

Can anyone feel that they may have a serious illness and it could be cancer?

You may think ‘Its not possible’, but yes cancer can be ‘sensed’

I ask all the patients, whether they felt ‘not normal’ and that there is a serious illness lurking around. Most of them say  ‘yes’. There is a feeling that something is wrong. the body is becoming weaker and the energy is going down. Or loss of weight and stamina.Many times visit to doctor is postponed or get treated with some usual medications.

Its a combination of nonspecific symptoms, but one does feel ” definitely unwell” .

I am reading the book” when breath becomes air” by a young neurosurgeon Paul Kalanithi, who is diagnosed with advanced lung cancer. He also realises that there is some serious illness, may be ‘cancer’. Its a moving story of an aspiring surgeon who works hard and is about to realize his dreams, when cancer strikes him. He writes his own story , perhaps mirroring the stories of many patients he had seen.

I recall a professor of surgery, a well known teacher, who one day suddenly declared that he had pancreatic cancer. His family and friends were surprised as he looked healthy.

‘Why  do you think so?’

‘For years I have taught students that migratory phlebitis  (red streaks on legs ) is a sign of pancreatic cancer and I have show them in my patients’.

“Now I have the same sign”.

He was investigated in disbelief, but the diagnosis was confirmed.

The first response however is denial, even more amongst doctors. No it cannot be. Then as time goes, the inevitable symptoms like pain set in and  the diagnostic tests are done.

I see many like him. So many experience that loss of energy as though slowly the life is getting squeezed. Its is best to  get investigated at the suspicion and not wait for full blown symptoms. Time indeed is the most critical as stage of diagnosis is the only major predictor of prognosis. Earlier the better.

You may be a busy corporate executive or your children have board exams. Something is always happening, but your health is a super priority. Nothing else matters.

The same thing happens to Paul in the novel. Loss of weight is due to ‘overwork’. Acidity is ascribed to ‘too many coffees and  stress’. Not eating well as ‘no time’.

I recently saw a CEO with symptoms and its only after six months that he went for investigations. Work deadlines,travel, annual reports , social life – so many ‘important’ things- more important than our health. we have so many proverbs but hardly ever care.

Health is wealth ( proverbial sense) , but it only ‘depreciates’ and not ‘appreciate’ like real ‘wealth’ in the bank.

Well the bank balances can evaporate with a single illness.

I see this also in elderly. ‘why bother my son or daughter when they are so busy with their jobs’. That’s not correct. Most families care for their parents and would be devastated if they find an advanced cancer . Many just ask the question” Can my mother or father be cured?”. No matter how old, even 80s, but they want the parents to be with them a bit longer.

Thats normal and human, just push the line a bit. A little more time , just a little !

So when you sense ‘something is wrong’, don’t brush it away.

An early check up can save your precious life.

 

 

 

 

Is cancer incidence increasing?

I met Roopa the other day and she asked me, “Doc, every friend or relative seems to be having cancer. Why? Is cancer incidence increasing?”

I am asked this question very frequently and I keep giving same answers to explain ( not convincingly ) the increasing numbers. With increasing longevity of life there is likely to be more cancer & non-communicable diseases. Life styles have changed and may contribute.

I recently went to the Indian Cancer Society Meeting on the Cancer Registry Project.   The Mumbai Cancer Registry records only residents of Mumbai and not migrant population and has plotted the incidence over the last three decades. Great work and a tough one too!

Breast and Lung cancers are increasing. There is  increase also in rectal and colon cancer.There is a continuous and constant increase in liver and gall bladder cancer in Mumbai. It is likely due to migrant population from north settling in Mumbai. Cervical cancer is decreasing as the hygiene is improving and parity is decreasing. In short we are transforming into a western pattern of incidence.

The worrying feature, however,  is the increase in mortality due to cancer. Stage to stage, more patients succumb in India than in other countries.

We have not made a significant dent overall in treatment. Its not that we don’t have facilities or expertise. We just continue to see patients in advanced stages.

I chaired a panel of experts.. The panel felt that prevention and early detection are the key. What is required is better diagnostic facilities for early detection

  • Creating awareness among people
  • Lifestyle modifications
  • Physician awareness and referal

These are not really difficult and if we concentrate on this perhaps we can start showing decrease as it is already happening in some of the countries in the West, in gastric, lung and cervical cancer.

More thoughts on these later.