Dignity matters

Bhuvaneshwari Rajendran*

Department of Neurology, Kauvery Hospital, Chennai, Tamilnadu, India

*Correspondence: Tel +91 95001 67591 Email [email protected]

“The strong survive but the courageous triumph” – Michael Scott

In today’s world, people think with advanced technology, anyone can be kept alive indefinitely but the question remains if it is only existence in many circumstances.

What is patient dignity and what was the person’s thoughts about dependency.

In India, advanced directives for refusal of treatment are not considered in situations of emergency.

However, there is a clear distinction when patient refuses a particular treatment however important it is, for prolongation of life and agrees to embark on the natural course of the disease even if it means death.

Patient has a legal right to autonomy and self-determination enshrined within Article 21 of the Indian Constitution. He or she can refuse treatment except in an emergency situation where the doctor need not get consent for treatment.

The Aruna Shanbaug’s case in 2011 also raised a lot of questions and explored termination of treatment or life support in cases of absolute poor prognosis, without any hope of recovery.

In Neurology, we have achieved so many trend setting treatments including genetic vector use, stroke interventions, immunological interventions and these advances are transforming the lives of many patients.

However, there are also many Neuros degenerative conditions where complete cure is not possible.

Once such is Motor Neuron Disease which is a progressive muscle wasting disease ultimately leading to death as the breathing muscles are also affected with time.

There is no cure for this condition although there are a few FDA approved treatment protocols which increases the survival of the motor neurons to some extent in the initial stages but it is not permanent.

It is a devastating disease because, most of these patients are mentally sound until end and this is very distressing for patients and families to endure.

As a neurologist/doctor, we do everything to help patients understand the disease and undergo treatment.

We also have to care for them psychologically many a times when there is a mental breakdown.

As the disease progresses, patient will develop breathing difficulties and also swallowing problems.

Non-invasive ventilation and feeding tubes are offered to overcome the above issues.

However, if there is further deterioration then procedures such as tracheostomy and peg tube are considered as the next step.

Tracheostomy is a procedure where a hole is made in the windpipe so that these patients can be connected to ventilators when required and it also prevents choking on one’s s own saliva, known complication, in patients with Motor Neuron Disease.

A Peg tube is a feeding tube directly connected to the stomach for feeding.

Patients are people who make the decisions ultimately.

When we doctors recommend such interventions to prolong life, patients and families understand and give consent.

But, what if the patient refuses?

He or she can outright say that they do not want to go through these invasive procedures.

Then what???

I have a story about this strong lady called Shyamala (name changed) who’s is a full illustration of strong Will.

I will remember her very fondly always.

This is the story

Shyamala aged 61 started to develop change in voice and slowing of movement in the beginning of 2017. She met many doctors and underwent multiple tests. Put on several medication including Parkinson’s medication.

However, she kept progressing with increased difficulty walking, muscle wasting in her hands and swallowing problems.
She met me in the month of September 2017.

When I saw, there was definite disease progression and it was clear that she had Motor Neurone Disease (MND)

It was then confirmed by a test called Electromyography.

I broke the bad news, Shyamala was quiet and calm.

Her husband and daughter broke down.

Shyamala just asked me one question with a smiling face, how long do I have to live doctor?

I had a lengthy conversation with family and her, regarding possible treatments with a caveat that they work to some extent only.

Shyamala was ok with that

We started her on Riluzole which slows the anterior horn cell from destruction to some extent.

We enrolled Shyamala to a Physio program to keep her muscle supple and prevent stiffness.

Shyamala was very brave and she fought the condition well. Every consultation after that was actually joyful as she was such a positive person. Joking with me all the time. She managed to maintain a good quality of life in spite of all the physical disabilities that she had.

Sometimes, in Neurology, we doctor form strong bonds with patients and families and this was a precious one!

Her family was brilliant, getting her a wheelchair and supporting her fully. She was a great cook, she continued to supervised household cooking. She would even tell me cooking tips when she comes to see me.

Fall of 2019, Shyamala was showing signs of deterioration. She was fully aware of this.

Again, it was time to discuss further interventions. As she was having breathing difficulty, we got her a non- invasive ventilator and she accepted that for use as when required, mainly nights. But She refused feeding tube.

She was very clear, I take food orally, if I cannot eat then that is how the end comes!

So, we got the dietitian involved, changed the consistency of food and tried everything to increase the nutritional value as intake was poor

This went on till end of 2019. Even during such a challenging and difficult time, she was never distraught

She lost the ability to vocalise, could move only her fingers especially on the right.

Even then, when she comes into the room, she will smile and give me a thumbs up.

Again, it was time to discuss about tracheostomy and Stomach feeding

She used her fingers on the iPad and informed me politely – NO Doctor.

I could see tears rolling down from her husband’s eyes. She turned and looked at him and smiled gently.

That moment, I could not control my tears…

I do get emotional at times especially when we form this strong rapport with the family.

I then asked her again and said, if we do not do these things then natural course could be quick/

She again typed on the iPad- I KNOW

People who read this might think that this is a depressing situation but I realised that minute, that this brave woman had made her choice.

She was right in many ways; she wanted her dignity till end.

She was ready to embrace the outcome with grace

Actually, she triumphed

She made her decision!!!

In fact, at the end of that consultation, we were all smiling, I asked her if she felt ok, she showed her thumbs up.

A couple of weeks later, family came without Shyamala and I Knew.

We talked about her for length and her fighting spirit till the end. Family thanked me for respecting Shyamala’s wishes and giving her the dignity that she deserved… RIP

This patient will be one of my memorable patients of my career for ever. She lived her life fully on her terms only.

It is not the length of life but the depth of life – Ralph Waldo Emerson

Dignity matters

Dignity matters

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