change in order

India’s laws on organ transplants do little to protect rights of organ donors

The legal framework needs to ensure that the donor gives informed consent as well as legal and medical aid for donors.

In August 2016, Surat resident Brijkishore Jaiswal needed a kidney transplant and was all set to receive one from Shobha Thakur, a 42-year-old domestic worker from rural Gujarat. But in order to get the kidney, Jaiswal tried to pass Thakur off as his wife and said that she was donating the organ altruistically. Jaiswal was paying Thakur for her kidney and thus breaking the law, which bans commercial organ donation.

When the racket, involving doctors at the Dr LH Hiranandani Hospital in Mumbai, came to light, Thakur was left stranded by the hospital. The doctors had begun the surgery with her, but were stopped by the Mumbai Police before they retrieved her organs. She was arrested in the case and had to remain in prison five weeks after bail was granted as she did not have the money to arrange for it, nor was anyone from her village willing to arrange for a guarantor from her. Non-profit organisations like the Centre for Enquiry into Health and Allied Themes and Human Rights Law Network in Mumbai helped Thakur after her arrest.

Thakur’s case is an example of how India’s organ transplant laws do little to protect organ donors, who are often from poor socioeconomic backgrounds and sometimes coerced into making the donation. At a recent meeting of doctors, legal experts, activists and a government representative, on possible changes to the Transplantation of Human Organs Act, most people agreed that donors often agree to transplant procedures due to coercion or a dire need of money, and need to be protected as victims and not seen as perpetrators of the crime.

As per the Act, both near relatives and unrelated persons can donate an organ to a recipient. A near relative can make the donation after a hospital committee instituted by the hospital where the transplant operation is going to take place permits it on the basis that the donation is purely altruistic. An unrelated donor has to be vetted by a state government appointed committee. Any kind of organ trade, involving money or other remuneration, is illegal.

However, as many organ donation rackets that have been unearthed in India have shown, patients who need organs and are unwilling or unable to wait for a cadaver or altruistic donor rely on middlemen to find donors. The recipient pays both the donor and a fee to the middleman. Sometimes, doctors themselves connect their patients to these middlemen and get a cut of the transaction.

Amit Kumar, an Ayurvedic doctor who had no surgical training, was the mastermind of kidney rackets in Dehradun, Gurugram and other cities in India and had admitted to performing a number of renal transplant surgeries. (HT Photo)
Amit Kumar, an Ayurvedic doctor who had no surgical training, was the mastermind of kidney rackets in Dehradun, Gurugram and other cities in India and had admitted to performing a number of renal transplant surgeries. (HT Photo)

When these rackets are busted, the law penalises the organ donor as well as the others involved. The law allows for the donor to be arrested for the offence that attracts between five and 10 years in jail and a fine of between Rs 20 lakh and Rs one crore.

The Vidhi Centre for Legal Policy, a non-profit think tank that organised the meeting to discuss the law, has brought out a research reporton the Act in which it notes that in case of organ trafficking, the buyer and the facilitator of the transaction will be usually better off, and often the donor is from the poor, marginalised section of society. The report notes infers that “In such a situation, the victim cannot be treated on the same footing as the buyer of the organ. A human rights-based approach to organ trafficking also requires that the victim be placed at the center of any initiatives to combat the practice.”

Is consent really informed?

Organ donors are required to sign a brief consent form which leaves the donor open to criminal prosecution and contains no information on the risk of donating an organ.

“The affidavit that a donor is supposed to submit does not address the issue of coercion, deception, or abuse,” said advocate Veena Johari, who works on health rights. “Besides, there is nobody monitoring these processes. Who is checking if the consent is really an informed one? That is why abuse is happening.”

To ensure that the consent provided by the donor is informed, the doctors have to spend time with the donor, and speak to the person in private, explaining the consequences of the surgery.

Dr Sonal Asthana, a liver transplant surgeon in Bengaluru, recalled an instance where a recipient’s female family member was under pressure to donate her liver. She was only able to tell the doctor in private that she did not want to undergo the surgery. The doctors followed her wishes and informed the family that she was medically unfit for the surgery.

Maintaining data on the outcomes of the surgeries can also help donors make a decision about organ donation. For instance, very few donors are told about the risks of death among donors, especially in liver transplant surgeries.

While developed countries such as the United Kingdom and the United States maintain registries on outcomes of the transplant surgeries, there is no such data collected in India. Dr Anil Kumar, national programme officer with the National Organ and Tissue Transplant Programme, said that so far it has been very difficult to collect information even on the transplant surgeries in various states, let alone outcomes of surgeries.

The National Health Services has issued an information bookletfor donors which states that 20% of liver donors experience complications. There is also 0.5% to 1% risk of death, as per the results reported from all centres around the world.

Dr Sanjay Nagral, a liver transplant surgeon from Mumbai, said that often when doctors speak to donors privately about the complications of the surgery, they can tell if the donor has agreed to donate the organ willingly or is being coerced.

“We do not see many doctors telling the donors that they can die of the surgery,” he said. “We need to have an opt-out mechanism for the donors.”

Decriminalising donors in illegal transplants

Another indication of coercion in organ transplants lies in statistics that show that most donations are made by women and people who are poor.

Kumar said that though the government has not tabulated the exact figures, at least 60%-70% of live donations are done by women. The government has not data on the gender of donors, so far. Conversely, many more men compared to women are recipients of organs. In a 2013 Tamil Nadu report, where most transplant surgeries in the country take place, 72% of men undergo surgeries, as compared to 28% of women.

Dr Amalorpavanathan Joseph, who was heading the organ donation and transplant programme in Tamil Nadu said that end stage renal failure which requires transplantation of kidney is caused mainly by diabetes and hypertension. Both these ailments are common among both men and women. In liver failure cases which require transplantation, alcoholism is one of the major causes of the failure, and perhaps men are more affected as compared to women.

As Johari pointed out, so far, the law has not managed to stop either organ trade or exploitation of donors. Decriminalising victims of organ trade rackets will enable them to come forward and approach authorities, without fear of prosecution, the Vidhi Centre report noted. The report also recommends that state should provide free medical treatment to the victim donors and introduce long-term compensation schemes for the people who suffer long-term disability or illness as a result of trafficking.

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What hospitals can do to drive entrepreneurship and enhance patient experience

Hospitals can perform better by partnering with entrepreneurs and encouraging a culture of intrapreneurship focused on customer centricity.

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Most of these tech enabled solutions have emerged as hospitals look for better ways to enhance patient experience – one of the top criteria in evaluating hospital performance. Patient experience accounts for 25% of a hospital’s Value-Based Purchasing (VBP) score as per the US government’s Centres for Medicare and Mediaid Services (CMS) programme. As a Mckinsey report says, hospitals need to break down a patient’s journey into various aspects, clinical and non-clinical, and seek ways of improving every touch point in the journey. As hospitals also need to focus on delivering quality healthcare, they are increasingly collaborating with entrepreneurs who offer such patient centric solutions or encouraging innovative intrapreneurship within the organization.

At the Hospital Leadership Summit hosted by Abbott, some of the speakers from diverse industry backgrounds brought up the role of entrepreneurship in order to deliver on patient experience.

Getting the best from collaborations

Speakers such as Dr Naresh Trehan, Chairman and Managing Director - Medanta Hospitals, and Meena Ganesh, CEO and MD - Portea Medical, who spoke at the panel discussion on “Are we fit for the world of new consumers?”, highlighted the importance of collaborating with entrepreneurs to fill the gaps in the patient experience eco system. As Dr Trehan says, “As healthcare service providers we are too steeped in our own work. So even though we may realize there are gaps in customer experience delivery, we don’t want to get distracted from our core job, which is healthcare delivery. We would rather leave the job of filling those gaps to an outsider who can do it well.”

Meena Ganesh shares a similar view when she says that entrepreneurs offer an outsider’s fresh perspective on the existing gaps in healthcare. They are therefore better equipped to offer disruptive technology solutions that put the customer right at the center. Her own venture, Portea Medical, was born out of a need in the hitherto unaddressed area of patient experience – quality home care.

There are enough examples of hospitals that have gained significantly by partnering with or investing in such ventures. For example, the Children’s Medical Centre in Dallas actively invests in tech startups to offer better care to its patients. One such startup produces sensors smaller than a grain of sand, that can be embedded in pills to alert caregivers if a medication has been taken or not. Another app delivers care givers at customers’ door step for check-ups. Providence St Joseph’s Health, that has medical centres across the U.S., has invested in a range of startups that address different patient needs – from patient feedback and wearable monitoring devices to remote video interpretation and surgical blood loss monitoring. UNC Hospital in North Carolina uses a change management platform developed by a startup in order to improve patient experience at its Emergency and Dermatology departments. The platform essentially comes with a friendly and non-intrusive way to gather patient feedback.

When intrapreneurship can lead to patient centric innovation

Hospitals can also encourage a culture of intrapreneurship within the organization. According to Meena Ganesh, this would mean building a ‘listening organization’ because as she says, listening and being open to new ideas leads to innovation. Santosh Desai, MD& CEO - Future Brands Ltd, who was also part of the panel discussion, feels that most innovations are a result of looking at “large cultural shifts, outside the frame of narrow business”. So hospitals will need to encourage enterprising professionals in the organization to observe behavior trends as part of the ideation process. Also, as Dr Ram Narain, Executive Director, Kokilaben Dhirubhai Ambani Hospital, points out, they will need to tell the employees who have the potential to drive innovative initiatives, “Do not fail, but if you fail, we still back you.” Innovative companies such as Google actively follow this practice, allowing employees to pick projects they are passionate about and work on them to deliver fresh solutions.

Realizing the need to encourage new ideas among employees to enhance patient experience, many healthcare enterprises are instituting innovative strategies. Henry Ford System, for example, began a system of rewarding great employee ideas. One internal contest was around clinical applications for wearable technology. The incentive was particularly attractive – a cash prize of $ 10,000 to the winners. Not surprisingly, the employees came up with some very innovative ideas that included: a system to record mobility of acute care patients through wearable trackers, health reminder system for elderly patients and mobile game interface with activity trackers to encourage children towards exercising. The employees admitted later that the exercise was so interesting that they would have participated in it even without a cash prize incentive.

Another example is Penn Medicine in Philadelphia which launched an ‘innovation tournament’ across the organization as part of its efforts to improve patient care. Participants worked with professors from Wharton Business School to prepare for the ideas challenge. More than 1,750 ideas were submitted by 1,400 participants, out of which 10 were selected. The focus was on getting ideas around the front end and some of the submitted ideas included:

  • Check-out management: Exclusive waiting rooms with TV, Internet and other facilities for patients waiting to be discharged so as to reduce space congestion and make their waiting time more comfortable.
  • Space for emotional privacy: An exclusive and friendly space for individuals and families to mourn the loss of dear ones in private.
  • Online patient organizer: A web based app that helps first time patients prepare better for their appointment by providing check lists for documents, medicines, etc to be carried and giving information regarding the hospital navigation, the consulting doctor etc.
  • Help for non-English speakers: Iconography cards to help non-English speaking patients express themselves and seek help in case of emergencies or other situations.

As Arlen Meyers, MD, President and CEO of the Society of Physician Entrepreneurs, says in a report, although many good ideas come from the front line, physicians must also be encouraged to think innovatively about patient experience. An academic study also builds a strong case to encourage intrapreneurship among nurses. Given they comprise a large part of the front-line staff for healthcare delivery, nurses should also be given the freedom to create and design innovative systems for improving patient experience.

According to a Harvard Business Review article quoted in a university study, employees who have the potential to be intrapreneurs, show some marked characteristics. These include a sense of ownership, perseverance, emotional intelligence and the ability to look at the big picture along with the desire, and ideas, to improve it. But trust and support of the management is essential to bringing out and taking the ideas forward.

Creating an environment conducive to innovation is the first step to bringing about innovation-driven outcomes. These were just some of the insights on healthcare management gleaned from the Hospital Leadership Summit hosted by Abbott. In over 150 countries, Abbott, which is among the top 100 global innovator companies, is working with hospitals and healthcare professionals to improve the quality of health services.

To read more content on best practices for hospital leaders, visit Abbott’s Bringing Health to Life portal here.

This article was produced on behalf of Abbott by the marketing team and not by the editorial staff.