Tag: patient

La Médecine C’est Guérir Parfois, Sulager Souvent, Consoler Toujours

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A friend approached me today. His mom is ebbing away with one of the most primal challenges — losing her ability to breathe. A tumor grows around her vocal cords, constricting her ability to eat, or swallow her saliva, or breathe – while her mind works and shuts down internally into depression and despair.

‘’La médecine c’est guérir parfois, soulager souvent, consoler toujours’

This medieval French admonition to doctors is to ‘Cure occasionally, relieve often, comfort always’

Much of my experience with patients is one where they are more terrified of what doctors will do to them in pursuit of an often elusive cure. We have invented many novel methods of torture in the pursuit of life – and apply them indiscriminately in response to fears, anxiety, guilt and shame; both ours and the families’.

Over some time, we uncovered that his mom doesn’t want treatments. She wants to feel more comfortable. Lessening the tidal wave of fear of choking was the only comfort that made sense to offer.

I tinkered around with some solutions — cool humidified mist, thickened fluids, a touch of benzodiazepines to allay anxiety. We also talked about music, prayer, family, and food for taste or comfort rather than nourishment.

Where is our calling and ability to minister to those dying from our incurable maladies?

Palliative and supportive care medicine is just now reaching some recognition in most of the world. The Indian Supreme Court ruled recently that a person’s right to dignity and privacy included a natural death in a course of their choosing.

As the technology to cure improves, so must our resolve to releave and comfort those beyond our means.

I am eager to expand Navya’s palliative recommendations, especially in settings where we die suffering without any help or comfort. The full spectrum of care must include the ability to recognize a patient’s dignity and preferences, and to comfort – always.

-Dr. Naresh Ramarajan

 

Online Expert Opinion: navyanetwork.com/tmh

Tata Trusts: tatatrusts.org

Tata Memorial Center: tmc.gov.in

Navya: www.navya.care

Tata Memorial Centre (TMC) National Cancer Grid (NCG) Online – Navya Expert Opinion Service: Empowering cancer patients with expertise and information on their treatment options

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TMC NCG Online – Navya Expert Opinion Service empowers patients with critical information within 24 hours enabling families to make robust decisions in cancer care with adequate inputs from oncologists at Tata Memorial Centre and National Cancer Grid . This service, available at www.navya.care, allows patients to upload their reports and get a response from world renowned experts.

While diagnosing the presence of cancer can be relatively straightforward, treatment is highly specialized and the number of experts experienced in managing complex cases is very few. Many cancers are curable or can be managed for a number of years if diagnosed early and treated appropriately. Choosing the right therapy can be the difference between the best possible outcome and failed treatment. Patients are able to receive the best possible treatment opinion which includes what therapy to choose (surgery, chemotherapy, radiotherapy or immunotherapy) as well as dosage, duration, side effects and other details pertinent to the treatment. The detailed report, that answers all questions asked by the patient in language that is simple to understand, can then be shared with the local oncologist to proceed with the treatment locally.

Since 2015, over 12,000 patients from 22 developing countries have reached out to Navya to get expert opinions. Abdul Rahman, who lives in Erbil, in the Kurdish region of Iraq, had previously undergone surgery for pancreatic cancer. Five year later, he started experiencing acute pain in his abdomen and a subsequent CT scan showed a tumor on his liver that had metastasized to his lungs. The local physician asked his family to take him to a tertiary care center that could adequately advise a treatment plan and recommended Tata Memorial Center in Mumbai, India.

Abdul’s brother in law, Haseeb, started evaluating the logistics of traveling to Mumbai and found that the travel and lodging expenses for a trip for him and Abdul would be upwards of $5000. Further, the procedure of getting a medical visa would take at least a few weeks. They would also need to travel with no visibility on how long they would need to stay in Mumbai as they did not know what treatment would be recommended.

Haseeb started finding out more about Tata Memorial Center by going online when he came across the TMC NCG Navya expert opinion service. He was initially skeptical about the veracity and thoroughness of the service as he did not know if it would be comparable to making a trip to Mumbai. He decided to register at www.navya.care and explore the service further.

On registering, Haseeb received an email that explained the complete process that the expert opinion service followed. He would need to upload Abdul’s reports, which would then be summarized and sent to relevant experts at Tata Memorial Center who would provide a treatment plan that would be detailed in a patient report. This patient report could then be shared with the local physician in Erbil and he could be treated there. “The expert opinion service was a boon to us as this was more convenient and cost effective than traveling to Mumbai and Abdul could get treated locally”, said Haseeb Mohammad.

The necessary reports were uploaded following which a patient advocate spoke to Haseeb to understand the case in detail. Some additional reports were sought which the family had but didn’t know were relevant. “I found the person who spoke to me to be very empathetic and thorough in understanding the history of the case. This gave us comfort that the case was being comprehensively analysed.” He was immediately able to upload the additional reports that had been requested.

The case was summarized and sent to a gastrointestinal expert who had trained at National Cancer Institute designated cancer centers such as Harvard, Stanford and UCLA affiliated cancer centers. The expert’s recommendation was detailed in a patient report and the treatment plan included chemotherapy that could be administered in the local hospital. The report was shared with the local physician who started the treatment immediately.

Mr Haseeb said: “Our experience with the online expert opinion service was all that we had hoped for and more. In addition to it being cost effective and quick, we were able to get a treatment plan from an expert without the patient having to travel long distances. The patient advocate was thorough, the process was efficient and the report that we received was detailed and the treatment plan followed international guidelines. Our doctor in Erbil felt that we had made the right choice in approaching TMC NCG Navya online to get an expert opinion.”

Families seek to vet treatment plans with experts but often access to experts is limited. Balancing the need to act quickly while ensuring the decision is made with all relevant inputs is when Navya’s Online Expert Opinion Service becomes a powerful ally. The timely response from experts through Navya has meant that the treatment followed standards accepted globally and may have been the difference between a failed treatment and the best possible outcome.

Data Driven Doc: Staying Informed on the Diagnosis (Part 2 of 2)

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(Continued from previous post here)

We struggled with how to let my dad know about this upstaging. I intensely felt the need to protect him from bad news and at the same time the need for disclosure to move ahead. But I couldn’t move past the diagnosis and into treatment planning until he knew. We waited for his appointment that evening and then broke the news to him.

Perhaps overwhelmed by this unforeseen information, I dropped my guard. The urologist recommended surveillance to see if the cancer cells at the positive margins would grow. We did not start any anti cancer therapies. We were not even referred to see a radiation oncologist.

For a high-grade tumor that was outside the capsule of the prostate already, this approach should not have passed the smell test. But all the energy I had put into researching my options were now focused on helping dad recover from the surgery. We simply took the urologist at his word and waited. I didn’t even lookup my online medical references.

No surprise to anyone but us, the tumor markers quickly started inching up and doubling. Imaging showed that the recurrence was not spread in the body, and was still local. Alarmed, I went back to my information-first mode, and read every study on local salvage therapies. I was surprised to find out that early salvage radiation and hormones immediately after surgery were already becoming standard.

I discovered that in most other locally advanced tumors with a high grade, positive margins aren’t simply ignored, rather are treated with repeat surgery or adjuvant therapies!

Although reeling for lost time, I was also exceptionally thorough this time. We went through every possible radiation and hormone therapy option – to radiate the pelvic nodes or not, use protons or photons, what dose, to use short course or long course hormones or no hormones.

I read every study and guideline that was applicable. I spoke with every expert in the area I knew at UCLA, Stanford and nationally. I wanted to be certain that I was making a decision with the best information at hand.

After extensive discussions with my father on his preferences, and discussions with his radiation oncologist, we embarked on round two of beating his prostate tumor. My dad was fully aware of his diagnosis, his options, and his choice of therapy. The clarity of that knowledge and reassurance that we were doing everything possible gave us so much strength. Instead of being victims to the process and the disease, and have something to hide from and be protected from, we were open, clear, calm and as much in control as we could be.

That was almost 5 years ago. Luckily, my dad continues to have his 3 month check-ups that are coming back clear. He is not out of the window of recurrence just yet, but it is safe to say we are getting there.

Not all stories have happy endings. Despite being treated at the best cancer center in America, my aunt succumbed to inflammatory breast cancer in 2009. She was diagnosed the same year as my father, and we went through the same exhaustive search for therapies and options that we did with my father. When she went on hospice, she knew she had exhausted every option medical science could offer us at the time. I still carry that little piece of reassurance inside me today.

While my physicians have my best interests in mind, they are limited in ferocity as this is not their battle to fight. It is mine.

I see a diagnosis of cancer for what it is now. Without knowing the name of my enemy, I cede power of fighting to others. While my physicians have my best interests in mind, they are limited in ferocity as this is not their battle to fight. It is mine. Staying informed on the diagnosis, science behind the options, and the experience of true experts in the field is the only reassurance I can have that the best possible decision has been made.

-Dr. Naresh Ramarajan

Online Expert Opinion: www.Navya.Care
Tata Trusts: tatatrusts.org LinkedIn Facebook  Twitter
Tata Memorial Center: tmc.gov.in  Facebook
Navya: navyanetwork.com  LinkedIn  Facebook  Twitter

Data Driven Doc: Staying Informed on the Diagnosis (Part 1 of 2)

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I’ve been told the events of the first time so many times, that I have a vivid memory of it now. My fathers mother, Bhuma, succumbed to a recurrent brain tumor that kept growing in the small confinement of her skull. When she was first admitted to a small hospital in Massachusetts, confused after a fall, my father was not at her side. My aunt had driven her to the hospital, and first received the news of impending brain surgery. But without my father around, my aunt couldn’t let my grandmother know. Bhuma was a woman who was in exquisite control of her world and those around her. To know that she was losing that control in a strange land would unravel her deeply, thought my aunt. Could she undergo surgery without knowing why?

Although common in South Asia and other parts of the world, this idea of keeping a diagnosis secret from the patient, especially one who needed a surgery, was foreign to the surgeon. As the story goes, my aunt stood between the surgeon and my grandma, and refused to translate a word of his English into her Tamil. The standoff continued until my father got there the next day.

Once my father arrived, my aunt gave up her shield to him. The energy of my family was spent in understanding the prognosis and explaining it to my grandmother. It did not occur to them to explore what treatments to do and in which sequence. It was 1989, and the trust in the surgeon was much higher than the trust in the patient.

After much reassurance from the surgeon, and not much understanding, my family consented to neurosurgery. The tumor was incompletely removed, and treated almost too conservatively. It came back again and again until there was no radiation or surgery that would stay it’s course.

I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone, and what sense of acceptance and calm allowed her to continue through the storm of medical care that pursued her the rest of her life. For a woman who consistently went out of her way to ensure that even her neighbors had their lives in order, the loss of autonomy and empowerment might have been frightening.

I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone.

Many years later, cancer found my family again. Freshly graduated from Stanford Medical School and an intern at UCLA, I felt ready to assume decision making for my father. When we were initially debating surgery vs radiation for early prostate cancer, I did exhaustive searches of the published research and expert reviews. I understood the side effects and the tradeoffs extremely well. My father became integral to the decision making. We made a calculated choice to go for surgery. My father strongly preferred to have the cancer out, and to have radiation available as a salvage option. The evidence and guidelines supported either choice, although each expert still had their preference in the matter. We were confident we had made the right choice.

So when my mother called me with her early online access to dad’s pathology report – I was saddened and grateful at the same time. The tumor was more aggressive than we thought, a Gleason score 9 instead of a 6, was not early and limited to the prostate but had invaded the surrounding tissues, and the margins were positive. There was still some of that cancer left behind.

We certainly would not have known this information without a surgery. My dad was in the small percentage of patients where the preoperative imaging and biopsies had not picked up the full extent of the disease. It was a lucky alignment of our decision and hindsight.

-Dr. Naresh Ramarajan

Online Expert Opinion: www.Navya.Care
Tata Trusts: tatatrusts.org LinkedIn Facebook  Twitter
Tata Memorial Center: tmc.gov.in  Facebook
Navya: navyanetwork.com  LinkedIn  Facebook  Twitter

Data Driven Doc: As Easy As ‘Tak, tak, tak’

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Early on in creating Navya- Gitika and I met with the CEO of a private hospital in Mumbai exploring interest in Navya’s expert opinion services. He dismissed us offhand- saying he could email his friends ‘tak, tak, tak’ (Indian/Desi colloquialism for ‘instantly’) and get a response from them on any questions he had. Funnily enough – he was a radiologist who didn’t see the power of asynchronous and instantaneous collaboration on medical information. Today teleradiology is one of the largest medical services online.

A few years later, I’m impressed with how many ‘tak, tak, tak’ connections Navya has created for our patients across the world. We had 20 requests for consultations today, and we were able to get instantaneous reviews of many of the cases by international experts.  Where one expert’s response wasn’t confident enough, we got two or three to confirm! Back to the patient in a day!

A well-connected CEO of a hospital may get his medical questions answered by specialists in a jiffy, but the true value of Navya on democratizing expert information across the world, instantaneously, is beautiful. It’s truly as easy as ‘tak, tak, tak’.

-Dr. Naresh Ramarajan

Online Expert Opinion: navyanetwork.com/tmh
Tata Trusts: tatatrusts.org
Tata Memorial Center: tmc.gov.in
Navya: navyanetwork.com

Quality vs. Quantity

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umbrellas-205386_1280There are a lot of technologies out there.   How many of these are touching a patient?  A doctor?  An expert?  A family member?

Technology is the basis for results.  Without data, decisions cannot be made.  Without intuition and learning, a decision cannot be perfected.  There are a lot of technologies:  cognitive computing, artificial intelligence, natural language processing, machine learning, but that will not save a life.  Don’t let anyone fool you into believing that a system can save a life.  I’ve been a patient, a family member, a technologist committed to cancer care, and I can tell you that technology is insufficient and far from application-ready.

There is data everywhere.  I’ve written about this before.  But just as one does not need to know all the books written in this world to add two numbers, or be successful as an expert, there is a critical mass of knowledge that can be obtained and utilized effectively.  So don’t be fooled with vastness of data that one might possess.  Your grandma told you, it’s quality not quantity that matters.  So one need not know all the medical textbooks and clinical trials in the world to be a cancer expert, but one must certainly know all the relevant practice changing trials and have experience being an expert.

Your grandma told you, it’s quality not quantity that matters.

Ultimately, it is intent.  Why is a company building a technology.  Why is a doctor providing online opinions. How credible is it.   Does it matter that there is data on every single patient ever treated in my type of cancer, if my cancer is common or unique.  Think hard. Think wise.

Intent matters.  The use of technology with experts who want to enable patients – through a service that is only focused on patients and nothing else, requires very little buzzword technology, very focused data, a small number of true experts, a family of clinical analysts and patient advocates willing to serve patients as their own, and a large number of patients in a population that is struggling to get its basic needs met in cancer care.

Navya and Tata Memorial Centre in the Indian subcontinent, in 34 developing countries in Asia and Africa.

The patented Navya Expert System, the pioneering technology in evidence and experience-based treatment decision making and the one of a kind experts at Tata Memorial Centre.

Navya is committed to holding the hand of every cancer patient and lifting them to the same pedestal as everyone else in the world:  expert cancer care for all.

Navya is the only clinically validated end-to-end decision system in cancer treatment decision making.  The Navya system is patented and the first innovator in this field.  Use Navya at navyanetwork.com/tmh

You, your family, your friend, will always have us no matter the cancer to conquer or access to technology and data.  Access is always enabled through us, and our system, service, and experts empower for real, in a format that you can consume from home!

tmc.gov.in

tatatrusts.org 

 

Decision Making

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flowers-164754_1280Decision making is about pros and cons.    I was on my way to Boston Logan, to catch my flight to Bangalore.  My cofounder called me, and said “it’s a Navya moment.”    There was a personal, family, decision that he was helping coordinate, while he was at the Maui airport to fly across the country to get to his family in New York City.   Between our flight schedules and travel times, we had about an hour or so to chat before certain important decision had to be made.   The clock was literally ticking, and we started our process.   He had looked up the papers that discussed clinical trials and retrospective analysis of individuals in similar circumstances as his kin.  (He will write about these experiences in a blog post, soon.)  The advantage of waiting versus proceeding with a surgery was about five days at most.   That, was the known.  The evidence.  That we could likely delay surgery by five days and gain the benefit that would bring.  However, the disadvantage, the unknown, the risk of any complication while waiting, far outweighed the known disadvantage (mandatory stay in a well-managed, top of the line, intensive care unit).   Then, the experts.    Experts known to us pointed to their experience of being able to manage any complexity of surgery at the time.   They were comfortable, confident, yet let us (the patient and the family) decide.  What did the patient want?  There was anxiety.  There was anxiety about the known and the unknown – what was worse?  What did she prefer?  Patient preference.  And then, the much talked about guidelines – the international guidelines that indicated that both, surgery and non-surgery were acceptable options at this time.  Brilliant!  Not helpful.   It was a Navya moment.  We had to reconcile, hold each other’s hands, and decide from the patient’s perspective.

There are many elements to decision making.  Evidence, experience, experts, and patient preference being the most measurable, computable, elements.  Guidelines of course are the most general and are the weakest link.   At the center though, is the process of utilizing and combining all of the above.  The Navya process, which is extendable from oncology to obstetrics decision making.   The gentle consideration, the conversations, the repeated conversations on the various considerations, the data, the people, the process.  Always results in a decision that is well thought out, bringing clarity, and rooted in the best evidence and experience of experts.   The Navya process that we followed in an hour long conversation lead to two beautiful outcomes, a pair of healthy baby twins, born at the right time to a mother who felt relieved with confidence in her decision.