Patients story: Dignity matters

Bhuvaneshwari Rajendran

Senior Consultant, Neurology and Neurophysiology, Kauvery Hospital, Alwarpet, Chennai

Background

The Strong survive, but the courageous triumph

– Michael Scott.

In todays world people think that, with advanced technology, anyone can be kept alive indefinitely but the question remains whether it is only mere existence in many instances. What is patient dignity and what was the persons thoughts about dependency?

In India, advanced directives for refusal of treatment is not considered in situations of medical emergency. However, there is a clear distinction when a patient refuses a particular treatment advised as necessary towards prolongation of life, and instead chooses to embark on the natural course of the disease even if it means death.

Patient has the legal right to autonomy and self-determination as 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.

An Overview of the Condition

The Aruna Shanbaug case in 2011 had raised a lot of questions and explored termination of treatment or life support in the circumstance of absolutely 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. These advances are transforming the lives of many patients. However there are also many Neuro degenerative conditions where complete cure is not possible.

One such is Motor Neuron Disease which is a progressive muscle wasting disease ultimately leading to death as the muscles of respiration are also affected with time. There is no cure for this condition. However there are a few FDA approved treatment protocols that increase the survival of the motor neurons to some extent in the initial stages but that benefit is not sustained.

It is a devastating disease because, most of these patients are mentally sound till the very end and this is very distressing for patients and families. As neurologists we do everything to help patients understand the disease and undergo treatment. We often have to care for them psychologically also, as many a times there is a mental breakdown, an emotional melt down.

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 steps. Tracheostomy facilitates connecting to ventilators when required and prevents a patient choking on ones s own saliva, a known complication in patients with Motor Neuron Disease. A Peg tube directly connects to the stomach for feeding. Patients make the decisions ultimately when 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.

A Patient story

I have a story about this strong lady called Shyamala (name changed) who chose to exercise her strong willpower. I respect her for that and shall remember her very fondly always. This is her story. Shyamala aged 61 (name changed) started to develop a change in her voice and slowing of movements of parts of the body in the beginning of 2017.

She met many doctors, underwent many tests and was put on several medications including those for Parkinsons disease.

However, she kept worsening, and developed increased difficulty in walking, wasting of muscles in her hands and problems with swallowing.

She met me in the month of September, 2017.

When I saw her, there was definite disease progression and it was clear that she had Motor Neurone Disease (MND) that was then confirmed by Electromyography. I broke the bad news. Shyamala was quiet and calm but 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, but with a caveat, that they work to some extent only. Shyamala was ok with that. We started her on Riluzole which slows the destruction of the anterior horn cells to some extent

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

Shyamala was very brave, and 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, doctors form strong bonds with patients and families, and this was a very precious one!!

Her family was very thoughtful, getting her a wheelchair and supporting her fully. She was a great cook, she continued to supervise household cooking. She would gladly give me tips on cooking when she visited me at the clinic.

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

She lost the ability to vocalise, and could move only her fingers especially of the right hand.

Even then, when she comes into the room, she would smile and give me a thumbs up. Soon it was time to discuss about tracheostomy and enteral feeding.

But she used her fingers on the iPad and informed me politely- NO Doc!

I could see tears rolling down her husbands eyes. She turned and looked at him and smiled gently. That moment, I could not control my tear. I do get emotional at times especially when I form such strong rapport with the family.

I 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 was a depressing situation to be in. But, I realised that very minute that this brave woman had made her choice. She was right in many ways; she wanted her dignity till the end. She was ready to embrace the outcome with grace. Actually, she triumphed. She had made her decision; she was in control!!!

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 at length and about her fighting spirit till the end. The family thanked me for respecting Shyamalas wishes and letting her have the dignity that she deserved.

May she Rest in Peace.

She shall be one of my most 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.

Bhuvaneshwari

Dr. Bhuvaneshwari Rajendran

Senior Consultant – Neuroscience

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