My Health My Right – A Provider Perspective

Article by: Dr Deepashree M R

Health rights are fundamental to our well-being and autonomy. They encompass various aspects, including the right to access healthcare services, the right to make decisions about our own body and treatment options, and the right to privacy and confidentiality regarding our medical information?(Department of Ethics, 2010).

On behalf of IIHMR Bangalore, I feel honored that I had a great opportunity to moderate an expert panel discussion to mark the occasion World Health Day, 7th April 2024. The theme My Health My Right for this year aptly focuses on patient rights, empowerment, and patient centricity in the care process. We are aware that the latest edition of ‘Key Principles of Right to Health’ is about participation and accountability along with access, availability, affordability, and quality of healthcare?(OHCHR, 2008). Keeping this in mind the panel discussion aimed at understanding the nuances of how the right to health of vulnerable patients and their participation in decision-making, as well as provider accountability, could be configured during care processes.

The panel of experts included - Dr Chethana H S physician/hospital administrator turned lawyer, Dr Mayur V Kaku popularly known as yogic-neurosurgeon, Dr Neema Bhat -Paediatric oncologist, Dr Vikrant Pawar – Critical Care expert and Dr Pushkar Desai - Consultant Anaesthesiologist. The online interactive discussion was tailored for a specific audience comprising of doctors, nurses, hospital managers, and healthcare consultants. This diverse group of professionals plays a crucial role in the healthcare sector, each bringing their unique expertise and perspective to the table.

The first question that arises is what constitutes the right to health in India, a fundamental right that has not been explicitly included among the six fundamental rights. Many of us may not know that right to health in India is not distinctly mentioned in the Constitution but is implied as a fundamental right through Article 21 and Directive Principles of State Policy (DPSP), making access to healthcare a fundamental right?(SHASHI SHEKHAR SINGH CHAUHAN, 2023)?(Singh, 2023). Dr. Chethana, doctor turned lawyer conveyed that enforcement of the right to health is done through various case laws and judgments, establishing it as an inherent part of the right to life. As health is a state subject, DPSP plays an important role in promoting public health and welfare, including provisions for worker health, maternal health, and a pollution-free environment.

Ensuring access, availability, affordability, and quality can be effectively achieved through initiatives such as health programs, Ayushman Bharat, QCI, NABH, NQAS, etc. but encouraging people to participate in their health-related decisions and accountability actively may require some nudge and equal participation from healthcare providers. This is exercised through informed consent, assent, patient education, counseling, and similar processes.

Addressing this Dr Mayur Kaku, stressed on the importance of holistic patient education in making informed decisions about surgery (taking examples from his specialty are of neurosurgery) or any other treatments. Being a ‘yogic neurosurgeon that he is’, he emphasized that educating patients on the type of treatment, including the diverse options available from traditional, alternative, and modern medicine systems, empowers individuals to take charge of their health, make informed choices, and benefit from a more holistic and personalized approach to healthcare. Maybe not many hospitals have the capacity to provide a ‘holistic approach or alternate medicine’, but most can provide opportunities for ‘second opinion’, and ‘encourage patients to participate actively in treatment choices. Information and communication are key to empowering patients and families.?

The panel discussed on ‘informed consent’ as an essential aspect of upholding patient rights and rightly so! This critical process may be seen as a routine exercise by healthcare providers, at least in some cases. This simply means that patients have the right to information (& further understanding) regarding their condition, treatment options, risks, and the freedom to make decisions?(Lydia A. Bazzano, 2021). This is a shift towards patient-centered care over paternalistic approaches in healthcare delivery, all over the world. In today's digital age, patients are increasingly informed about their medical conditions and this Dr. Google phenomenon provides a kind of medical autonomy for patients despite its complex effects and consequences. Therefore, it is even more imperative that healthcare providers practice ‘the informed consent process even more diligently. It is not anymore, a professional obligation but also a legal and ethical necessity.? It is a shared responsibility of doctors, hospitals, and patients or their families.

Dr. Pushkar Desai- Consultant Anaesthesiologist, also discussed at length obtaining consent which has moved from a mere paper signing ritual to video consenting.? He explained how video consenting through animated 3D procedural videos enhances patient understanding and connection with healthcare providers, leading to better outcomes. Video consenting is gaining popularity worldwide as an alternative to traditional informed consent processes. Dr. Pushkar sagely responded to an audience concern that a patient would become anxious if we began displaying 3D procedural images by saying that the video might be customized depending on the doctor's judgment. Well, patient-doctor trust and communication is fundamental to all types of consent-taking – video or verbal!

Evolution from paternalistic healthcare to patient-centred care, emphasizing the role of healthcare providers as partners in patient care. Healthcare service is ‘co-creation’ or ‘co-production’ in service management terminology. Here, one may ask, “how to involve vulnerable patients in medical decision making?’ Explaining this complex process, Dr Neema Bhat-Paediatric oncologist said that it is best to involve children and adolescents in the decision-making along with parents. Doctors must explain them in a language that they understand which helps in confidence building. Dr. Neema elaborated on ‘Informed Assent’, very important while treating children. ?

Informed assent from pediatric patients becomes extremely challenging, especially between the ages of 13 to 18, where adolescents are in a tumultuous mental stage, making it challenging for medical providers to balance treatment urgency and involving the patient in decision-making in care processes. Adolescents may require multiple sessions to open and participate actively due to their insecurities or fears. Dr Neema Bhat, advised not to take up treatment unless the child is ready for it.

The next topic of discussion revolved around making health decisions on behalf of others. Yes! Here I am talking about next vulnerable group - patients in critical care and elderly patients. Generally, grown up children of the elderly are involved in the process. A special case of how to deal with children living abroad and the complexities that arise out of that. Video calls have been a good option for physicians to discuss with children living abroad. However, cultural differences impact when and how decisions are made, with Western practices differing from those in India. The Critical Care Physician must navigate through such situations even more carefully. Elaborating on this, Dr Vikrant Pawar – Critical Care Expert, said that there is no open discussion on end-of-life care/situation in India as a common practice, yet. The bottom line is that the healthcare provider must honour the family's wishes while also offering guidance on the rapidly changing (or deteriorating) health conditions of the elderly. Overall patients, their family members and providers have equal responsibility in executing rights to health. Both healthcare providers and patients must engage in open communication and consider all aspects of critical care, surgery, or any other treatment options. The ‘Do Not Resuscitate’ (DNR) order is still not documented legal practice in India. It is a verbal communication between the clinician and the patient's relative or caregiver. In 2018, the Supreme Court of India created a process of ‘living wills’ to allow terminally ill patients, with no hope of a cure, to withhold or withdraw treatment and die with dignity. Its implementation has been slow in general, and the complexities involved make it difficult to operationalize the legal matters.

Taking the discussion forward, importance of patient autonomy and fundamental rights in healthcare decision-making, including the right to information and refusal of treatment were discussed. Patients have the right to refuse treatment, leading to discussions on living wills, advanced directives, and euthanasia. Legal and ethical considerations surround end-of-life decisions, requiring thorough family discussions and medical evaluations. Advanced Medical Directive (AMD) is a right allowing individuals to decide on their level and manner of care in terminal or incurable conditions, ensuring a meaningful survival beyond mere existence said Dr Chethana.

The core takeaways from the panel discussion on "My Health, My Right" is the fundamental importance of individuals having control and authority over their own healthcare decisions. This means everyone should have access to healthcare services regardless of their background or financial status. Secondly, it's about making sure people are fully informed about their health options so they can actively participate in deciding what's best for them. We need to prioritize educating people about their health so they can make well-informed choices. Third, involving patients in decision-making fosters a better rapport between patients and providers. Lastly, though decision during critical care or executing an ‘living will’ (AMD) is challenging, but such decisions will assist us in purposing dignified death.

One and half hour of discussion seemed ‘shorter’, the discussion on a tough subject of ‘My Health My Right’ theme was kept lively, and the audience participated actively, posed questions, and said that ‘they often tend to practice informed consent taking process routinely’. Many were impressed by the diverse, yet best practices explained by the experts and felt that they understood the importance of patient/family engagement and involvement much more deeply. Audience engagement during My Health My Right’ discussion was quite well balanced, and insights from the Q & A imply that clinicians, hospital managers and other healthcare providers need training a variety of areas such as sensitizing, mandatory, hands-on, refresher and open discussions on the topics must be ‘on going’ feature among providers in healthcare facilities. Patient/family engagement, education and empowerment occupies the centre stage, it is the way to go forward. It is heartening to note that hospitals and providers are taking initiatives in this regard. Specific mention must be made that there is a growing knowledge regarding statutory and ethical obligations, but as always, much more needs to be done to safeguard patients' well-being, promote patient-centered care, and advance equity within the healthcare system.

Let us join hands to further ‘My Health My Right’

References

1.????? Department of Ethics, E. a. (2010). Why a Human rights -based approach ? Human Rights and Economic and social issues section and millennium development goals section .

2.????? Lydia A. Bazzano, M. P. (2021). A Modern History of Informed Consent and the Role of Key Information. Ochsner Journal.

3.????? OHCHR. (2008). Right to Health Fcat sheet No.31. United Nations, Geneva.

4.????? SHASHI SHEKHAR SINGH CHAUHAN, A. K. (2023). RIGHT TO HEALTH: A CONSTITUTIONAL PERSPECTIVE. International Journal of Creative Research Thoughts .

5.????? Singh, D. (2023). The Right to Health as a Fundamental Right in India: A Comprehensive Analysis. Journal of Emerging Technologies and Innovative Research.

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Acknowledgment:

I am immensely grateful to Dr. Usha Manjunath Director of IIHMR Bangalore, for her valuable input and assistance in copy editing the article. Her expertise and guidance have greatly enhanced the quality of the content.

I would also like to thank Joyce Jaison and LAMBODAR JENA for organizing the enlightening panel discussion. Their efforts in bringing together a diverse group of experts have provided valuable insights and perspectives on the topic at hand.