The doctor who lives to care for the community

I reached the hall a little late. Given that it was the first annual day celebration of “doctor foundation”, I expected to disturb the speech of some important physician, while the other doctors on the dais frowned at the latecomer.
Instead, I found a lovely dance by children in progress, all energy and rhythm. Then came another, where the young choreographer (“a volunteer” the emcee said), was also a participant. Distribution of certificates to those who had completed a beautician’s course (“conducted by an employee”) followed.
As I began to wonder if I was at the right venue, I looked around at the audience. They were mainly children, all dressed for a special occasion. They were restless and happy, with my immediate neighbour bouncing up and down on his seat, enjoying the music. He looked at me as if asking why I was not joining him in the celebration. The lone photographer was having a difficult time protecting his tripod from those constantly running to a  better seat.

Just then, the person who had invited me appeared on the stage. The applause told me she was a favourite of the audience. After all, she was the popular “Bhalla Madam”— Dr. Khurshid Bhalla, Founder Trustee of The Doctor Foundation.

Facilitating the miracle of birth

Young Khurshid was always sure she would become a doctor. Her father, the late Maj Gen Dhunjishaw Doctor, had served as the Commanding Officer of a number of military hospitals across the country. That exposure, and her love for children presented paediatrics as a good option. Until a child’s death made her change her mind.
“During my internship, I happened to witness the death of a child who had been admitted to the hospital just four days previously. I was shaken up by that death. To me, it was grossly unfair that such a small child should die, even when he was undergoing treatment in a hospital and the paediatrician on duty was close by,” she remembered.
She turned to gynaecology and obstetrics. “I thought I would be happier dealing with birth. For me, every birth remains a miracle.”
Dr Khurshid Bhalla, now 65, retains her love for children, though she has not helped deliver a baby for several years.
Instead, at the helm of The Doctor Foundation (named after her father), she is today on the threshold of a new era in community care, going beyond medicine. 

Unfit for the business of care

She had the option of working with a private hospital or setting up her own clinic. Yet she has spent most of her life working for charitable organizations. Why?
“It is not that I did not try,” Dr Bhalla explained. “I did set up a small clinic in Pune. There I would carefully examine the patients who came, hear them out and then prescribe the test or medicine that they required. I would charge about ten rupees per patient. I thought it was my duty to help the poor and serve them at a price they could afford. I was naive enough to think my model clinic would help a lot of people in the locality. Instead, they simply stopped coming. And my nurse, who was my assistant, told me unless I started giving injections and tablets, no one would come. So, that was that. Obviously, I was not cut out for the business side of care and I could not afford to keep the clinic open.”
In 1996, she joined Care India Medical Society, a trust that provided a social support system in the prevention, early detection and terminal care aspects of cancer management. “Care India’s clinic where I worked was surrounded by homes of the underprivileged. HIV infection was rampant. A few years after I joined, I came across many HIV patients and their families,” Dr Bhalla remembered.
During those years, HIV infection was almost a certain death sentence. Many mothers lost their children; young wives their husbands. “I would visit the women at home and try to help. Some NGOs came forward to adopt some of the orphaned children. There was one shelter in the outskirts of Pune that took in HIV patients. They had zero facilities. Often the watchman, out of compassion, would bring rice and dal from his house to feed the patients.”
It was quite common to simply abandon HIV patients on the streets. “I heard many horror stories of patients curling up on the road all alone. When they vomited or had diarrhoea, they would drag themselves a little away from the filth, helpless and miserable. I knew this was cruel reality and not just fiction, when I heard a social worker casually announcing how she had abandoned her husband, who was in the final stages of AIDS,  outside their house before she came to work.”

Serving the imprisoned

As part of Care India’s work, Dr Bhalla used to visit Yerwada jail in Pune to examine women inmates. “The jail authorities were surprised that I mingled closely with the women. For me, they were simply human beings who needed care. Some of them were overcome because someone from ‘outside’ was willing to touch them, talk to them.”
Dr Bhalla was shocked to learn that some of the HIV-infected prisoners, whose terms were over, refused to leave the jail. They would plead to remain in  prison. “Where else would we go? Our families do not want us.” One ex-inmate settled under a tree a little away from the prison. The police decided to force the issue and took him to his house and browbeat the family into accepting him. After all, he was the owner of the house. That didn’t work. The next day he was back under the tree.

Finding a new path

Then Dr Bhalla got an opportunity to extend her work in HIV. In 2004, she joined Mukta, set up by Pathfinder International, funded by Bill & Melinda Gates Foundation. She started work in Budhwar Peth, where most of Pune’s sex workers continue to live and work. “There were about 3,800 women living within one km radius. Initially as I tried to connect to them, I understood that they had the same story—mouths to feed. And as they put it, ‘after the first time, it gets easier.’”
They did not want to be tested for HIV. “What’s the point?” they would ask me. “If we have the disease, we are going to die, test or no test. We would rather die without knowing.” It took a long time for things to improve. Things eased once antiretroviral therapy (ART) arrived on the scene. HIV infection was no longer a death sentence.
Dr Bhalla considers the 10 years with Mukta a great learning experience in helping the community scientifically. “We had some of the best trainers working with us. For the first time, I found myself hopping into a bus and travelling to unknown villages to set up a network of clinics. I never considered myself a teacher. That stint taught me to be a trainer, to work with a team, to share the commitment so that more people could benefit.”
After Mukta, Dr Bhalla returned to head the charitable chemotherapy unit of Care India Medical Society for a few years.

Be compassionate, not emotional

When it comes to palliative care, the norm is “detached attachment”. You should be fully attached when you are there with the patient, but detach yourself later. This ensures you don’t carry a baggage of interminable worries, fears and sorrows home.
“I know that I am a softie. But I can’t help being fully attached to my patient. Yes, I have been a victim of compassion fatigue more than once. But that’s who I am. I always say that I have more friends up there (in the heavens) than down here,” Dr Bhalla confesses.
A 10-year old boy with cancer of the bone was Dr Bhalla’s patient when she was at Care India. He was the only son of a mother with three daughters. Once the doctors were discussing his case with the mother. After all the tests, they had concluded that the only option was to amputate the affected arm. They announced this to the mother. “They ignored the boy who was in the room with them. As soon as he heard the verdict, he jumped up and ran out, screaming. I was very upset. That was not the way to break the news. They treated the boy as if he didn’t exist. I was determined to make amends,” Dr Bhalla remembered.
Despite warnings from her senior, she took personal responsibility for the child. “If he were my son,” Dr Bhalla told his mother, “I would try to save the arm.”
​She took the boy to Tata Memorial Hospital in Mumbai. There she found that there was a procedure to excise the affected portion and spare the arm. With the mother’s permission, Dr Bhalla got the surgery done in Pune.
“I felt vindicated. The family was happy. But the joy did not last too long. The cancer returned. The boy was in severe pain. Then he died,” Dr Bhalla was distressed to recollect the case. “Finally, I understood why my boss was cautious. There had been a similar case where they had opted for the amputation. That boy was now doing well and was a regular participant in the NGO’s cultural programmes. It was a painful but necessary lesson. You must be compassionate, but being emotional can cloud your judgment.”
Dr Bhalla regrets that compassion is largely missing today. “When my father was dying of cancer, several doctors were treating him and would come to meet him every day. He always looked forward to these meetings. Then they stopped coming. He would often ask us why they hadn’t come. Finally, the truth dawned. There was no treatment left for my father. What would they tell him? It was perhaps embarrassing to tell him that there was nothing more they could do. Looking back, I think even I failed my father as a doctor. Like the others, at that time I too did not know how to talk of death.”

Caring for the community

It is 2 a.m. The family has gathered around the bed of the dying elder. It is clear the end is near. The family has been prepared. Nevertheless, a call is made. After putting the phone away, Dr Bhalla gets ready quickly. Her scooter takes her to the house through empty streets, where “the stray dogs are my only companions”. She arrives and peace descends. She sits with the family until the end. She checks the patient one last time, leaves whispered instructions, consoles the family and goes back home.
“This is something I have been doing for a long time. Many of my patients are the elderly or terminal. I spend time with them and the family. It is a privilege to be with them during the last moments. Nothing happens medically; a lot happens emotionally.” Is this a service under The Doctor Foundation? “Yes, it falls under my free home visits,” Dr Bhalla said.
Walk into the Foundation’s clinic at Bhawani Peth in the evening and you are likely to encounter boys and girls learning to dance, young women learning to be beauticians, a tuition class and a couple of sewing machines that used to train would-be tailors until recently. Aren’t these rather strange engagements for The Doctor Foundation, headed by a medical doctor?

“The Doctor Foundation’s objectives are rather broad, but the main goal is medical care,” Dr Bhalla explained. “We were registered in 2013 and started out with home visits in 2015. We started this clinic in 2016 and opened another in Kondhwa (another locality in Pune) in 2017. I am fortunate to have a team of doctors, mainly specialists, offering their services at the clinic on different days. The idea is to offer professional medical service at a nominal cost. Why should the poor be denied the service of a medical specialist just because they cannot afford it?”
And the dancing children?
“My original idea was a care and community centre for the elderly. We ended up attracting more children from the neighbourhood. In any case, once we finished with the patients during the day, the entire space was available. Why not put it to use?
“An NGO donated sewing machines to teach the women in the community. Somehow, tailoring seems to have fallen out of favour, and so the machines are now idle. Then we had a part-time choreographer come in, keen to teach the boys and girls dancing. He is a big hit now! We also had an employee who was already qualified, volunteering to conduct a beautician’s course. Then a couple who takes tuitions free of cost for poor children asked me if they could conduct their classes here. So, we have a lot of young people coming to the clinic and, in my view, that really energizes the place,” Dr Bhalla said.
That explained the dance performances I saw at the annual day celebration. “I thought it was a great opportunity for the children to showcase their talent. The money for hiring the hall was donated by a well-wisher. In fact, the Foundation has not spent on a single piece of furniture you see here. Some came from my house; others are kind gifts from various people. I prefer to spend only on essential overheads. The rest is all for the patients,” Dr Bhalla was very clear.

Plans to do more

So far, Dr Bhalla and her team of visiting specialists have cared for more than 5,000 patients across the two clinics. She is very keen that the Foundation does more.
Her wish list for The Doctor Foundation has three main items. 
Set up a network of partner clinics. She wants to identify clinics that provide ethical, efficient service to patients and make them Preferred Partners of the Foundation. “I would like to begin with Pune and then spread to other districts.”
Improve the home care programme. Recruit the minimum essential team and train them. “I have a couple of old cars lying around. I will be happy to begin with those.”
Set up a hybrid home. “It will be a home for the elderly to begin with. Then I would like to add on an orphanage for children. I think the young and the old will provide each other very healthy company. It will be a happy home for both. They will not be just put there; they will want to be there.”
Would the plans be commercially viable? “I am counting on cross-subsidization. Those who can afford to pay will get better facilities. In the process they will help us serve more poor patients. The service quality will be the same.” Dr Bhalla is positive her dreams would come true.
Dr Bhalla is grateful to her fellow trustees for helping her set up The Doctor Foundation. “It has given my life purpose. I have a good reason to wake up every morning.” She also thanks her fellow doctors, the specialists who spare the time for The Doctor Foundation. “It is hardly remunerative for them. But they do it in the spirit of giving back.”
Several hundred beneficiaries may not understand the intricacies of a trust. They are simply grateful that Bhalla Madam will hear them out and tell them what is wrong with them. They know she is on their side. And she always has the time to sit with them and hold their hand.


… and they went back and lived as happy parents

I used to visit a nearby hospital as a gynaecologist. Then I had to give it up as I had a fall and fractured my wrist. That’s when Umesh Thapa and his wife Bista came home seeking my help.
Umesh was from a well-off family of farmers in Nepal. He had been married to Bista for about three years. They had no children. So, his family was pressurising him to marry another woman. This was apparently a usual practice in that community. But, Umesh loved his wife deeply. Rather than face everyone’s wrath, the couple “eloped” to Pune.
When they came to me, Umesh was working as a watchman. Obviously, they were going through tough times. Yet, they were pining for a child. They were convinced that I would be able to help them conceive.
Apparently, I have a longstanding reputation of being a “fertility expert”. However, all I do is counsel the couple and conduct basic tests. It is all about timing (ovulation) and technique (intercourse). Fortunately, the work I have done before makes it comfortable for me to talk about sex without making the others uncomfortable. After very many cases I am no longer appalled by the level of innocent ignorance I encounter.
Thanks to their faith, Umesh and Bista became the proud parents of a little boy, Shubham, within two years of their first visit to my place.
Now that they had a child, they were welcomed back home. Hopefully, they shall live happily ever after.

Khurshid Bhalla


First posted here


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Will your end when you still can

You know it is time. The disease has already won.
You are ready to let go. But your family is not, nor are the doctors.
As you lie there helpless, connected to so many tubes and machines,
you sense your loved ones beyond the door, their fear, their sorrow.
You wonder how they must be sacrificing to pay for all this.
You want them to sit near you and hold your hand.
And talk to you even if you can’t respond.
You want to tell them you love them and will always do.
You know they love you, too.
That is why you want them to remove all the tubes and machines.
And just be with you at home, while you take leave.
​In peace, with dignity.
If only you had told them how you wanted to go, when you could.


The Guardian recently reported a study that found “the brain shields us from existential fear by categorising death as an unfortunate event that only befalls other people”. In other words, we are wired to deny life’s only certainty, death.
That being the case, it can be difficult to document our preferences about death. How can we think and discuss about how we want to be treated (or not) should we reach a terminal stage, a point of no return? But, think we ought to. Discuss we should. Document we must.
The Supreme Court of India gave legal sanction to this “advance medical directive” or “living will” on March 9, 2018. The Supreme Court ruled that “in specific circumstances, a person has the right to decide against artificial life support by creating a living will,” and that “the right to life and liberty, enshrined under Article 21 of the Indian Constitution, also includes the right to die peacefully and with dignity.”
Delivering the judgment,  Chief Justice Dipak Mishra observed: “Should we not allow them to cross the door and meet death with dignity? For some, even their death could be a moment of celebration.”

Will, living and dead

Despite the ruling by the apex court, a living will remains a touchy issue. In 2015, three national medical associations of neurologists, intensivists and palliative care physicians came together to form the End of Life Care in India Task force (ELICIT). Dr Roop Gursahani, a consulting neurologist, who is part of ELICIT, says we “need to make conversations about death natural and not forced”. He points out that a living will “takes care of one’s healthcare decisions at the end of life.”
While living will formats can be easily downloaded from several sources (here is one), the government is yet to translate the Supreme Court ruling into enforceable procedures. Some experts feel what the court has suggested is too restrictive. You need to be certified terminally ill first, which may be too late. Also, the will needs to be countersigned by a judicial magistrate first class, who is not within easy reach of most people.   
Nevertheless, it is prudent to make a living will and communicate your preferences to your loved ones and those responsible for your health care. As it is difficult to plan for every eventuality, you can leave it to the discretion of one or two people whom you trust to implement your will. 

Financial planning

Mention “will”, and one tends to think of a very legal-looking document. And of lawyers, and members of the family throwing not-necessarily friendly looks at one another. You also think of someone very ill, unlikely to be helped by all that he (or she) owns and has willed it away for others to enjoy.
What matters most at the end is peace and dignity, at least for the patient. However, there is no wishing away the money elephant in the room.
Fortunately, compared to the ethical and medical issues, planning for financial security is easier, provided you are willing to start long before it is time to make that final transition. 


Matters of money and anticipation when life is in transition

A Certified Financial Planner, Sneha Jaggar recently qualified as a Financial Transitionist. Here she answers questions about finance and other issues at the time of life’s final transition. 

Q: Whether you wish to try everything possible to prolong life or decline heroic medical interventions, there are financial implications either way. How does one tackle this?

Sneha: Life is a very delicate topic. My life is more precious to my near and dear ones than I perceive it to be. And this is often observed when a family member has to decide about treatment at the end of a loved one’s life. These decisions are emotionally and financially draining if we do not know what the patient wants.
You can help your family by having three things in place:

  1. Life insurance along with health, critical illness and personal accident cover, when you are still working and earning.
  2. A separate fund for medical treatment at the time of your retirement. This will ensure that your family is not put under pressure when you are beyond insurance cover.   
  3. A living will that will make end-stage decisions easy for your family caregivers, without getting into ethical tangles. 

You help clients plan their life goals after retirement. Do you talk of terminal illness? Is it possible to quantify this requirement?

Like I said, from the financial planning point of view, everyone should have the four basic insurance policies in place. However, as it keeps on increasing with one’s age, paying health insurance premium would be difficult after retirement. Additionally, medical inflation (cost of medical care) is presently the highest at 12% per annum. This is the reason why we need a separate medical corpus for the post-retirement period.
When I speak to clients on retirement, I start by understanding their expectations. Many are practical. Some I need to sensitize about age-related illnesses. How much would they value their financial freedom should such a situation arise? 
The value of the corpus would depend on the individual and family, their standard of living, cash flow, net worth in the pre-retirement period, etc.

These days parents prefer not to burden their children with end-of-life care. Do you have that conversation with the parent(s) or the children or both?

Today, most parents are self-sufficient. However, they do need help in case of a medical emergency. Those who are still earning and want to be self-sufficient can build up a buffer for these emergencies. When I begin my conversations with parents, I try to understand where they stand in the Maslow hierarchy. 

When I know it is the right time to speak about legacy and wealth migration, I chart out detailed sessions with the parents first and then their children. During these sessions I speak not only about estate planning, but also about palliative care, end-of-life treatment and living will. Once the parents understand all this and are confident enough to talk about it, I involve the children.
However, in spite of the Supreme Court ruling, the legal status and practical applicability of the living will remain hazy. Therefore, I tell my clients they should consult their doctors and lawyers about this.

One son abroad is fully bearing the cost of treatment. The second son in India is the 24-hour caregiver but has no money. They have conflicting views on what is best for the patient, their father. How do you tackle such a situation?

In this scenario of transition, both the sons are in what we call the anticipation stage. You expect an event (end of father’s life) to occur but that has not yet happened. Both the sons portray struggle traits in their behaviour. The one abroad is probably feeling helpless as he cannot be present physically. The other one is experiencing emotional fatigue, where he cannot see his father suffering in front of his own eyes. As a financial transitionist, I would use certain tools to help them clear their fears and frustrations. Then help them arrive at a decision that both are happy with and is best for the father, too.

I cannot speak on the legal position, but some of the issues here are that of understanding and expectation. Generally, financial planners/advisors talk about goals because they’re trained to craft them, and create timelines and benchmarks.
Expectations are the spaces that exist in the narrative about goals. Some are vague, some are small, and some are fleeting. Regardless, they’re all important because they influence the thoughts and behaviour of the client. What makes expectations complicated is that they’re frequently not verbalized. Someone may or may not be correct about their perception of the expectations of others, even their near and dear ones. Regardless, expectations can create an unseen but powerful undercurrent that influences relationships, behaviour and satisfaction.
When left unexplained while making important decisions, those details become little spaces of uncertainty that could create financial and personal problems. I help clients write down their assumptions and expectations regarding an event yet to occur. I also discuss the time horizons to gain greater clarity about why they have these expectations. Based on similarities and differences, I help determine the next steps most relevant to them. It could involve separate one-on-one discussions or joint sessions.
This helps verbalize the thoughts and expectations one has of the other and brings the differences to light. Then it becomes easier to work towards a common ground.

When is the right time to talk of the living will?

Again, when I introduce this topic would depend on my comfort level with the client, his or her age, life circumstances, background and standard of living.  For example, if I’m talking to a just-married couple, I will have to be rather sensitive about broaching the subject of a medical corpus. However, if either or both of them have already had close encounters of the medical kind involving someone close, they would be already sensitized. It would be easier to talk about medical corpus, end-of-life treatment and living will.

In your opinion, what can be done to minimize confusion and ensure dignity at the end of life?

Just to sum up, five actions can help a lot:

  1. Maintain the required Insurance covers.
  2. Build up a medical corpus.
  3. Prepare a living will.
  4. Manage expectations during the anticipation phase of transition.
  5. Review the financial plan to be clear about the financial backing available.

It would be wonderful to work in tandem with the family doctor, the lawyer and the executor of the will. That will help nip most confusion in the bud. However, I would take this call based on the comfort level I have with the client and the time we have spent together. 


Have another question? Ask Sneha Jaggar. 


First published here


ALSO IN THIS SERIES

Why this series: crisis of compassion
A bedridden florist dying of cancer is relieved that compassionate care will ease his suffering and also look after his family after his passing
A palliative care physician who was once an atheist and critical care specialist answers
They were strong enough to be compassionate when the war tore the world apart and the dying were shunned
A son is happy he got to spend some time with his mother when she was still conscious, thanks to the palliative care doctor’s advice to come home sooner
A palliative care social worker helps two patients and their families cope with dementia
A palliative care social worker helps two patients and their families cope with dementia

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