Screening disability

The dilemma when a pregnant woman seeks to abort a foetus with a detected disability

Activists worry that pre-natal imaging and testing are leading to the elimination of disabled people.

On February 28, 2017, a division bench of the Supreme Court denied a woman permission to terminate a 26-week pregnancy after medical tests revealed that the foetus would be born with Down syndrome. This decision comes as one of several reported recently where late-term abortions have sought the nod of the judiciary.

The Medical Termination of Pregnancy Act is often said to be one of the more progressive statutes relating to women’s reproductive rights, globally. While the law allows medical terminations of any pregnancy up to 12 weeks, beyond this and up to 20 weeks, terminations are allowed for two reasons: a risk to the life of the pregnant woman or of grave injury physical or mental health, or there being a substantial risk that if the child were born, it would suffer from such physical or mental abnormalities as to be seriously handicapped.

The Act does not allow for a registered medical practitioner to terminate a pregnancy beyond 20 weeks gestational age unless there is a risk to the life of the mother, and so the courts are approached for permission for such procedures to take place. The Supreme Court, in this case, appears to have relied on the fact that delivering a child with Down syndrome does not pose any more risk to the mother than delivering a child without Down syndrome. What seems to have attracted attention was that while delivering the judgement, Justice SA Bobde reportedly observed that “everybody knows that children with Down Syndrome are undoubtedly less intelligent, but they are fine people… we don’t think we are going to allow the termination of pregnancy. We have a life in our hands.”

Justice Bobde, perhaps unwittingly, echoed the viewpoints of disability rights organisations around the world, particularly those representing persons with Down syndrome and conditions like spina bifida, which are now detectable well within the “safe” period for termination of pregnancies. They have voiced concerns that the vast improvements in imaging and testing are leading to their elimination from the diversity of humankind.

Screening out the disabled

In the United Kingdom, current imaging has resulted in a 90% termination rate of foetuses testing positive for Down syndrome. Efforts to step up such testing recently brought persons with Down Syndrome and their families onto the streets to protest against the government “screening them out”. Autistic persons have spoken out against global NGOs like Autism Speaks for raising for funding research focused on identifying genetic markers for autism, presumably so that autism can be prevented by way of prenatal testing as well.

Disability rights activists are clear that measures that prevent impairments, for example, promotion of folic acid supplements to expectant persons, vaccines, nutritional supplementation etc. are not problematic. However, elimination of persons who have these impairments most certainly falls foul of the human rights entitled to persons with disabilities.

The Committee on the Rights of the Child, in 1997, while discussing the rights of children with disabilities stated:

“It was of course vitally important to work towards the creation of a safer world for children in which the risks of impairment and harm were minimised, but the solution was not through the denial of life itself as a preventive strategy. Rather, we must celebrate diversity and learn to celebrate the birth of every child, with or without disability.”

Disability rights activists, particularly in the United States, are mindful of the potential their cause has to curbing women’s reproductive rights, particularly in the present political scenario. This discomfort is reflected in the Convention of the Rights of People with Disabilities itself.The discussions behind drafting of Article 10 on the Right to Life reveal that though many interest groups and states advocated for the specific bar on terminations of pregnancies on the grounds of disability, the text that received consensus was silent on the same. As seen from the concluding observations of the convention’s committee relating to the implementation of the Convention in Spain, termination of pregnancies on the grounds of disability when there was a general right to terminate a pregnancy was not per se violative of the Convention, but States that allowed for terminations only on the grounds of disability were violating the convention as the protection offered to the foetus was then not “on an equal basis with others”.

Informed choices about abortion

In India, where prenatal determination of sex and consequent termination of a pregnancy based on sex is prohibited, the door seems already ajar to argue that pregnant people have the right to terminate any pregnancy, but not a particular pregnancy on the grounds of the sex of the foetus. Interestingly, the National Commission for Women in India has opined that there should be no gestational age cap to terminate a pregnancy for certain cases including those in which there was a “substantial risk that if the child were born it would suffer physical or mental abnormalities”.

The draft amendment to the Medical Termination of Pregnancy Act, currently pending in Parliament, does not accept this viewpoint and retains the exception to the gestational age cap only in cases where it is immediately necessary to save the life of the pregnant woman.

At the very least, pregnant persons should be given the right to make an informed choice regarding continuation of their pregnancies. The spectrum of “physical or mental abnormalities” is a vast one and encompasses conditions that may cause some physical or learning impairment to those that practically guarantee the death of the child on the delivery table. These abnormalities may be caught in the recommended scans. The nuchal scan at 12 weeks that detects fluid build-up at the back of the foetus’ neck indicates chances that the baby could have Down syndrome. The anomaly scan at 20 weeks is designed to detect conditions from cleft palate, short limbs, spina bifida, anencephaly and missing or defective organs.

Obviously, forcing expectant parents to undergo a full term pregnancy to a certain tragic outcome is certainly a cruel human rights violation, but grouping this entire range of cases together by law stacks the odds against the disabled. The draft Medical Termination of Pregnancy Act merits reconsideration in light of India’s obligations under the Convention of the Rights of People with Disabilities.

New understanding of disability

Research has shown that medical professionals often make highly subjective decisions in advising termination of pregnancies. Activists in India have demonstrated that medical professionals currently do not have the training for a rights-based approach to disability. Diagnoses like Down syndrome and spina bifida, after all, carry no clarity as regards the kind of support the child requires. All human beings, from newborns to the elderly require some degree of support in their day to day activities. Persons with disabilities merely require a different kind of support than others.

With the current 20-week limit, expectant parents are often forced into time bound decisions immediately after their second trimester scans, with insufficient information regarding what having a child with a particular impairment actually involves. They are instead assured that the child would have a poor quality of life, reinforcing accepted notions of eugenics.

Sustained efforts of the disability sector have resulted in technological advancements, legislation, social protection schemes and other inclusive measures to ensure full participation of disabled people in public life. Attitudinal barriers remain, encouraged by the isolation of persons with disabilities in special schools, sheltered workshops, and long-term homes away from the community. Perhaps, we would welcome a child with a disability into our lives if we had grown up with classmates with disabilities, or seen them as mainstream characters in films, or worked alongside them, or at the very least had access to speak to them to ask if they led lives worth living. Their answers could lead to a change in the perceptions of many.

The writer is a lawyer with the Equals Centre for Promotion of Social Justice.

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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.

At the Emory University Hospital in Atlanta, visitors don’t have to worry about navigating their way across the complex hospital premises. All they need to do is download wayfinding tools from the installed digital signage onto their smartphone and get step by step directions. Other hospitals have digital signage in surgical waiting rooms that share surgery updates with the anxious families waiting outside, or offer general information to visitors in waiting rooms. Many others use digital registration tools to reduce check-in time or have Smart TVs in patient rooms that serve educational and anxiety alleviating content.

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 Scroll.in marketing team and not by the Scroll.in editorial staff.