Ethics enters the medical curriculum

This was first published in Deccan Herald on January 01 2019

Read more at: https://www.deccanherald.com/opinion/perspective/healthy-curriculum-medical-710753.html

 

One of the significant announcements by the newly appointed Board of Governors of the Medical Council of India in November this year is an overhaul of Undergraduate medical curriculum to re-vitalize and contextualize medical education, keeping abreast of evolving healthcare challenges and needs. It is twenty-one years since a re-vamp of this scale, and colleges are preparing to introduce these changes from 2019.

Significantly, teaching of ethics has finally been mandated, a much-awaited move that is hoped will orient students to ethical norms and social expectations as they enter professional life. The World Medical Association ‘Resolution on the inclusion of medical ethics and human rights in the curriculum of medical Schools world-wide’ adopted in 1999, urged that ‘teaching of medical ethics should become and obligatory and examined part of the medical curriculum in every medical school’. This did not materialize in India, where with very few exceptions, ethics did not find a place in formal medical training. The Medical Council of India itself is facing an existential crisis following allegations of mismanagement, and is due to be replaced by a National Medical Commission through a Bill introduced in the Lok Sabha in December 2017.

With falling standards of ethical practice and calls for regulation and accountability in healthcare, medical faculty acknowledge the need to introduce ethics, but cite an overcrowded curriculum and absence of trained faculty as hurdles in this regard. In the absence of a mandate, colleges produce graduates and specialists who may be technically competent but remain insensitive to the ethical obligations owed to their patients. The direct impact of this lapse over the last few decades may be hard to quantify, but we are painfully conscious of the gradual erosion of trust in the medical profession, the commercialisation of medicine, and violence against doctors.

Despite technical advances in medicine, it is still an inexact science, with newer insights shaping the evolution of practice. The art of medicine however, like the empathic touch, the listening ear and the voice of concern, remains a constant feature; particularly relevant today in an age of dehumanising treatments and techno-diagnosis. Patients rightfully expect from the doctor a respectful attitude and sensitive communication. Further, sickness is a state of extreme vulnerability where trust in the doctor, and confidence in his ethical standards, can provide a great measure of comfort. However, there is little emphasis on these aspects of care, leaving patients disenchanted with the transactional attitude encountered in reality.

An ethical code of conduct is a social contract between the profession and society based on principles and values that apply to the practice of medicine. If students were merely skilled to diagnose and cure, without emphasis on moral conduct and respect for human rights, their formation would be incomplete. Engagement with ethics and medical humanities is essential to sensitise doctors to the human condition, social and cultural needs, and the rights and dignity of individuals. The Draft of the Patients Charter prepared by the National Human Rights Commission and circulated by the Ministry of Health and Family Welfare in August 2018 for public comment, is based on human rights, and provides an understanding of the expectations of patients in health care settings. It highlights the need to protect patients and their autonomy in medical decisions, clearly setting the standards in patient-provider interactions.

In this context, the mandate to include ethics clearly expressed in the new ‘Competency based Undergraduate Curriculum for the Indian Medical Graduate’ is the appropriate response to a long-felt need. Not only does the new curriculum envision a ‘Professional, who is committed to excellence, is ethical, responsive and accountable to patients, community and profession’, but it also expects that clinicians will be able to ‘demonstrate knowledge of medico-legal, societal, ethical and humanitarian principles that influence health care’. It describes a special course named ‘Attitude Ethics and Communication’ (ATECOM) that will run across all years of training, using lectures, case discussions, reflections and evaluations in training modules designed to familiarize students with values in medicine, the role of the doctor, ethics, communication skills and social expectations.

At its heart, the medical profession addresses a profound human need. Teaching medical ethics, communication skills and professionalism, alongside good role modelling, will serve to form doctors with a ‘medical conscience’ who recognise the vulnerability in patients and the importance of upholding their trust. Integrating ethics into every subject of the curriculum will help students recognise the ethical dimensions in use of new medical technologies and complex clinical situations and equip them to make ethical decisions alongside clinical decisions, in the best interest of the patient.

(The writer is Adjunct Faculty, Division of Health and Humanities, St Johns Research Institute, Bengaluru)

Why doctors feel forced to go on strike

This was first published in Deccan Herald on August 17 2019

https://www.deccanherald.com/opinion/in-perspective/why-doctors-feel-forced-to-go-on-strike-754901.html

The call by Indian Medical Association for a strike against the National Medical Commission Bill did not receive the expected response. The earlier nationwide medical strike over the violence against doctors is still fresh in memory, with its aftermath of broken trust and simmering resentment. Health systems convulsed as doctors took what they believed was the only recourse to highlight their distress. The plight of assaulted doctors and indifference of the authorities drew empathy from all quarters, and the strike affected every state of the country. Even now, unsettling conditions persist, and society will have to demand solutions in order to effectively preempt further strikes.

Medical professionalism eschews civic actions like strikes that are against the ethos of health services. Of the many entrenched problems in our health system, debated after every medical strike, two concerns await urgent attention after the violence at the NRS Hospital in Kolkata.

We should be concerned with the circumstances that push doctors to turn against the tenets of their own profession and strike work, a decision that is almost never taken lightly. It goes against the principles of beneficence and non-maleficence enshrined in medical ethics; also the Essential Services Maintenance Act that preserves continuity of health services in public institutions, so that a citizen’s fundamental right to life is preserved. But clearly there are other human rights at stake too. Doctors deserve a safe working environment, free from any form of harassment, if reasonable benefit should flow to the patient. Further, critically ill patients have a right to be cared for in a peaceful space, not have their doctors assaulted and hospital rooms thrashed by marauding gangs. When junior doctors feel isolated and abandoned in an imperfect system, they can hardly be blamed for defending their own right to life and safety in the workplace, even as their actions are framed as a dereliction of duty.

For many patients, public hospitals are the only recourse, as they cannot afford other options. These facilities are chronically overwhelmed, with an unceasing flow of patients, stretched resources and overworked personnel. Neglect of these hospitals and inadequate infrastructure is an injustice that cannot be ignored much longer; sub-standard care can never be justified, even if it provided free of cost. It does not answer the distraught mother with a dying child in her arms. The desperation and helplessness in such situations can lead to the backlash against institutions and doctors, who personify the inadequacies of this sector – a scenario that has recurred time and again.

In August 2018, a draft ‘Charter of Patient Rights’ was prepared by the National Human Rights Commission, and placed for comment in the public domain by the Ministry of Health and Family Welfare. Its objective is to ‘educate citizens regarding what they should expect from their governments and healthcare providers in health settings’. Besides the Right to Information and Human Dignity, it assures patients of the ‘Right to safety and quality care according to standards’. Access to timely and efficacious health services is a human and constitutional right of every citizen; an urgent change that is needed if we are to end this injustice that can tip into violence.

Another issue is the training and the preparedness of our doctors in the face of professional demands and stress of the workplace. Interns and junior doctors are often left to manage critical emergency services; a typical flashpoint in incidents of violence so far. The presence of specialists and senior faculty would go a long way in handling complicated cases. The shocking remedy of bouncers and firearms suggested by some sections would deal a deathblow to the already strained doctor patient relationship. Emphasis on communication skills, breaking bad news and empathy is needed in the formative years.

Until now, ethics and communication did not find a placed in a crowded undergraduate curriculum, which was focused instead, on knowledge and examinations. In a much-awaited move, the Medical Council of India has finally instituted curriculum reforms after 21 years, mandating training in ethics, attitude and communication through its AETCOM modules from 2019. These and other skill-based competencies, will equip young doctors to take on their responsibilities with the right blend of competence and compassion. This foundation in ethics and professionalism will help to handle stressful situations and negotiate complex decision-making, including empathic conversations with distressed families.

In addition to ethics training in medical colleges, upgrading of public hospitals and provision of timely accessible health care to every citizen are important measures that will restore dignity and calm to this vitiated sector. Violence against doctors is unacceptable and there should be zero tolerance of this mindless savagery. Introspection and action on systemic problems in healthcare and training, addressing them in a transparent resolute manner, can ensure that doctors never again need to resort to strikes in this country.

(The writer is Adjunct Faculty, Division of Health and Humanities, St Johns Research Institute, Bengaluru)

 

Conversations About Dying

This was first published in Deccan Herald on March 10th 2018

http://www.deccanherald.com/content/669453/conversations-dying.html

The Supreme Court judgement of March 9, 2018 in Common Cause vs Union of India upholds “the sanctity of human life” and “the right to a dignified existence, the liberty to make decisions and choices and the autonomy of the individual” even at the end of life. Emphatically prohibiting active euthanasia and physician-assisted suicide, it focuses instead on situations at the end of life and terminal illness, when life-sustaining medical treatments may be inappropriate or burdensome. A decision to withhold or withdraw such treatment would then allow the inevitable process of death due to the underlying illness.

The term ‘passive euthanasia’ has wrongly been used to describe such situations and the Indian Council of Medical Research in its ‘Definitions of Terms at End of Life’ has urged that this term be dropped as it could be misunderstood. Doctors are often unable to ethically justify continuation of care that is inappropriate or unlikely to be beneficial for the patient. Family members faced with decisions to withhold or withdraw inappropriate treatment find it extremely traumatic, and often leave it to the doctor. At other times, due to social pressures or emotional stress, families insist that “everything” is done for the patient. These situations are far from ideal, and unnecessary expensive, aggressive treatment can be avoided if patient’s wishes are known and communicated.

In its judgement, the Supreme Court has allowed Advance Directives by conscious and informed patients that would clearly express in writing their acceptance or rejection of treatment choices, should they become unconscious or incapacitated at a later stage in their illness. It endorses the right to autonomy of the patient regarding treatment and also protects the physician’s decisions made in the best interest of the patient.

The court ruling on Advance Directives and withholding/withdrawal of treatment confronts us with the uncomfortable task of talking about dying. Important factors that have forced this conversation on us today are longevity and advancements in intensive care. According to World Bank data, the average life expectancy in India has risen from 41 years in 1960 to around 70 years in 2015. The elderly are more likely to face situations of intensive care, cancer treatments and hospitalisation.

Advancements in therapeutics and medical technology, the boon of modern medicine that saves countless lives, can become a burden in end of life situations if the treatment is not beneficial and the experience undignified. It is not uncommon for the elderly to refuse either hospitalisation or ICU care. Some view bed-confined and comatose patients, Alzheimer’s and progressive neurological disorders with dismay, dreading the accompanying loss of control and autonomy. Just as it is meaningful to consider how we wish to live, it is equally important to think consciously about dying. While death is a moment in time, dying may be longer and more complex than we anticipate. The truth is, we are unaccustomed to talking about dying, find it deeply troubling, and fervently hope that we will not face tough medical decisions when the time comes. In our homes, death is a taboo subject, whispered about and considered inauspicious, even likely to invite the inevitable upon us! All this would have to change as medical technology and new laws force us to confront ethical issues around dying, to ensure that our choices are respected at the end of life.

Conversations about death allow us to confront the meaning of our existence, the purpose of suffering, and the concept of a ‘good death’ through the lens of religious beliefs, personal philosophy and moral values. The ability to accept the limits of medicine and a poor prognosis can help patients dwell instead on the quality of their final moments. A study by Steinhauser, et al, published in 2000, ranked key issues that contribute to a ‘good death’, like freedom from pain, peace with god, presence of family, mental awareness, respect of treatment choice, settled finances, meaningful life, conflict resolution, and death at home.

Once the barrier to these discussions is broken, patients will be able to share apprehensions and choices related to the dying process, including medical interventions, palliation and even organ donation. This can be helpful for family members who may have to make surrogate decisions on behalf of the patient. Withholding or withdrawing futile treatment does not mean that the patient is abandoned. Pain medication, oxygen, nutrition, symptomatic care and palliative care are essential components of medical care that dying patients are entitled to. While doctors are not obligated to provide treatment that is futile, particularly in view of limited resources, they have a professional duty to treat the dying with dignity, ensuring comfort and care of the patient until the end.

In light of the Supreme Court ruling, we need to begin conversations about death and dying and encourage our communities to confront this discourse. It can lead to better outcomes of care, ameliorate dilemmas in Intensive Care Units (ICU), Emergency rooms and oncology units, and assist doctors in serving the best interest of the patient.

Olinda Timms

Anesthesiologists: Unsung heroes of OT

This was first published in Deccan Herald on Oct 27th 2017

http://www.deccanherald.com/content/639548/anaesthesiologists-unseen-heroes-ot.html

October 16 marked the anniversary of the first successful demonstration of ether anaesthesia at Massachusetts General Hospital in 1846, celebrated annually as World anaesthesia Day. The possibility of surgery without pain was considered one of the greatest contributions to humanity and the practice of medicine.

Transformations in the field of clinical anaesthesiology followed rapid advancements in medical technology and pharmacology, and a better understanding of human physiology and disease. Its complexity and diverse applications resulted in the creation of anaesthesiology as a distinct medical speciality, a much-coveted professional choice after graduation.

From the perspective of patients, however, there is apprehension about ‘going under anaesthesia’ and the anaesthesiologist remains an enigma. Lack of general information has resulted in common myths and misconceptions that cause unnecessary fears at the time of admission into hospital for surgery. Let us look at a few:

Are they doctors? Anaesthesiologists are not just doctors, but they are specialists like surgeons, orthopaedics, or gynecologists. They have undertaken the same number of years of study and training, and have comparable experience and authority. Today, there are even super-specialities like neuro-anaesthesia, cardiac anaesthesia, intensive care and paediatric anaesthesia.

When do we meet them? Patients may only remember the masked and capped head in the operation theatre, with the kindest eyes and voice, asking them to ‘count backwards from 10…’ In fact, the anaesthesiologist is one of the consultants who visit you before surgery to examine you, ask about your past medical history and evaluate your physical fitness for anaesthesia, and describe the plan along with some instructions.

What do anaesthesiologists do? Depending on your medical condition, general health and proposed surgery, anaesthesiologists will ensure that you experience no pain during surgery and the surgeon can operate efficiently. Under general anaesthesia, you will be unconscious, and will only be woken up after the surgery is over. In regional anaesthesia, the sensation is blocked only on the operated part of the body, but you will still be comfortable.

Will I wake up during the surgery? The anaesthetic drugs are titrated so that you will not be conscious during general anaesthesia. Studies reveal that less than 0.05% of patients wake up during surgery. Even when they do, it is possible for the anaesthetist to recognise and correct this situation.

Is it always ‘the anaesthesiologist’s fault’? Just as the risk of surgery is explained to you depending on the type of surgery and your physical condition, there is also risk associated with anaesthesia. Some risks can be minimised by simple measures like rehydration, controlling high blood sugars and blood pressure, and using medications. Risk can be higher in elderly, emergency surgeries, complicated surgeries and very sick patients. This is always explained to the patient or relatives before consent is signed. Every care is taken to use appropriate anaesthetic drugs and monitor patients throughout. For this reason, blaming the anaesthesiologist for every death in the operating room would be grossly unfair.

Do they only work in the operation theatre? While most of the work happens in the operating room, emergency and intensive care is another medical discipline that requires the unique expertise of the anaesthesiologist. Here they are involved in resuscitation, artificial ventilation, invasive monitoring and medicating patients who are critically ill, terminally ill, or accident victims. Anaesthesiologists also work in pain clinics using medications and other procedures that relieve pain in chronic or terminally ill.

Is there anything patients can do? Always request to see your anaesthesiologist if you have a surgery planned and ask about the kind of anaesthesia, the procedure and the risks. Share information about your medical history, allergies and medicines you are taking, including previous operations and family medical history. Follow instructions carefully regarding fasting and medications before surgery.

Anaesthesiologist are the unseen, unsung heroes of the operating room, working with other surgical specialists for your well-being. Technology may have invaded the operating room in the form of high-tech monitors, anaesthesia delivery machines and ultrasound guidance, but the best protection for the patient is always an experienced anaesthesiologist; ever watchful and swiftly responsive. A patient fully awake after the operation, pain-free and comfortable, is ample reward.

Olinda Timms

Public Health is State’s Responsibility

This was first published in Deccan Herald on Aug 29th 2017

http://www.deccanherald.com/content/630280/public-health-states-responsibility.html

The outcry over the recent deaths in Gorakhpur is justified and must not let up until there is complete reform of the public health system. Early investigations have pointed to a sys­temic dysfunction for which the state government should take full responsibility. If the economically deprived cannot receive healthcare in government institutions, where should they go? And this tragedy is re-lived in many other states where public health facilities are in deplorable condition.Add to this the dismal state of determinants of health, like poor water and sanitation, poverty and rising prices of food, we have a disaster in the making. It is going to be impossible to rein in health indices and achieve any health goals in this country if the government does not revamp its hospital, primary health network and preventive care programmes.

Non-governmental organisations and health watch groups have been advocating reform and health budget increases for years. While budget allocation by itself is no answer without accountability and transparency, this is one way to build the infrastructure and manpower needed to provide healthcare access to underserved populations in rural areas.Instead, the Niti Aayog and the Centre have mooted public-private partnerships in government hospitals for diagnosis and treatment of non-communicable diseases. This move has been criticised as a bid to bring market forces into healthcare, a move that will surely raise healthcare costs and worsen inequalities and exploitation of patients. Giving up on its responsibility to provide access to healthcare goes against the WHO Charter on health and human rights.

The WHO constitution enshrines “…the highest attainable standard of health as a fundamental right of every human being.” This right includes access to timely, accessible and affordable healthcare of affordable quality. This is conspicuously absent for much of our population, driving them further into debt and poverty with every health crisis, as they have to bear out-of-pocket expenditure.Article 25 of the UN Declaration of Human Rights, 1948, says “Everyone has the right to a standard of living adequate for the health and well-being of himself and his family…” The right to health was again recognised as a human right in the 1966 International Convention on Economic Social and Cultural Rights. India is also a signatory to the charter of ‘Health for all by Year 2000’. The Directive Principles of State Policy of our own Constitution provide for “improvement of public health” as one of the primary duties of the state.

It is crucial that the wider social community and the medical fraternity question the indifference of the state to public health and the ominous move to privatise healthcare in India. While privatisation may have worked in other sectors, it is crucial that the government continues to provide healthcare and education to the vast majority of poor and middle class who may not be able to access private facilities.Although financially unrewarding, care of the marginalised and the poor is squarely the responsibility of the government in a democracy that values justice. Foisting the responsibility on the private sector is a callous abdication of this duty, and betrayal of the trust of the least-empowered citizens.

Driven by profit

The private healthcare establishment, with the exception of not-for-profit or mission hospitals, is mostly driven by profits, and would arguably not exist without it. This has a place in the network of healthcare resources, but it cannot be expected to do the welfare work of the government. In fact, the track record of public-private arrangements has been dismal.Market-driven institutions have not responded favourably to price caps on devices and surgical procedures, and the number of operation procedures like hysterectomies and cataracts suddenly increased when they were covered by government health schemes. Hospitals have been made to wait for months to receive dues from patients covered by government programmes. The law prohibits private hospitals from denying emergency care, but the government is silent on who should pick up the tab if that patient is uninsured and cannot afford to pay!

Despite promises of health insurance policies that will cover weaker sections, and several false starts, 80% of the population remains uninsured, according to the Central Bureau of Health Intelligence. Reams of paper and planning are spent on Sustainable Development Goals in Health, but these will pass us by if there is no political will for implementation, as have other laudable targets like ‘Health for All by Year 2000.’

Privatisation of healthcare in the US has not worked. Instead, there are other models of the public health system, such as in Cuba and Sri Lanka, that we could adopt and learn from. Given the size of the problem and complexity of the need, the formula to provide for health needs of all will only emerge from a concerted effort to remove inequalities, motivated by the intention to serve.Doctors have to advocate against commercialisation of healthcare that could alienate millions in this country. It is sad that the Gorakhpur tragedy was necessary to highlight this problem and for voices to be raised against the unjust neglect of the public health system, but let’s hope it is the turning point.

Olinda Timms

Violence against docs: System needs Reforms

This was fist published in Deccan Herald on June 13th 2017

http://www.deccanherald.com/content/617020/violence-against-docs-system-needs.html

In May, Dr Ajay Bansal was brutally assaulted in a Jaipur hospital by his patient’s relatives; he sustained head injuries and a broken nose. Only weeks earlier, a spate of attacks on doctors in Maharashtra led to a state-wide strike by junior doctors supported by the Indian Medical Association (IMA). The strike ended only after Chief Minister Devendra Fadnavis promised security at all government hospitals. In an earlier incident, post-graduate residents were beaten with a chair and blood pressure apparatus at Sassoon Hospital in Pune.

These chilling accounts are the most recent in a wave of violence and vandalism against medical professionals and hospitals that continues unabated. While there is universal condemnation and call for zero-tolerance of such crimes, it is critical for society to introspect on this disturbing phenomenon. Large segments of the population are dissatisfied with the current situation in healthcare. The government hospitals are woefully inadequate in staffing and infrastructure, forcing the patients to turn to private hospitals where costs can be prohibitive. Without medical insurance, most of these patients pay out-of-pocket, or use debt to settle hospital dues.

Catastrophic expenditure on health is the leading reason that pushes people into poverty. The budget for health has stagnated at a dismal 1% of GDP for years, resulting in a complete mismatch of needs and services. The private sector has been allowed to fill this gap in health services without due regulations and rationalising of costs. Limited resources invested in screening and prevention means that patients often arrive at the hospital at later stages of illness, need complex interventions and extended hospital stay, and face mounting costs and poor outcomes. This abdication of the government’s sovereign duty to provide access to health services can lead to helplessness and simmering discontent.

No purpose is served by attacking health personnel and hospitals. Violent behaviour in a facility holding sick and suffering patients is a disgraceful lack of civility and consideration. These outbursts of anger could be pathognomonic of frustration in society at the general breakdown of services, widening social disparities and corruption. Taking the law into your hands displays disregard for social norms and human life. Who will be next? The tax official, discom engineer, policeman or professor?

There is need for introspection by medical professionals and hospital management even as they toughen security and create ‘defence protocols.’ Whatever happened to the ‘doctor-patient relationship’ and ‘trust’ in medical care? Low doctor-patient ratios and high patient loads leaves minimal time with each patient; too little to form a relationship, allow for patient decisions or adequate information. The resulting confusion, helplessness and distrust can be counter-productive. Doctors say if they sp­end more time with each patie­nt, many will be left unattended.

Systemic malfunction

This again is a systemic malfunction that proper central planning and budgeting can overcome. The ‘medicalisation’ of healthcare has replaced health promotion and the art of medicine with diagnostics, drugs and technology that has dehumanised the experience, bringing in a consumer mentality and litigation. Also to blame are unreasonable expectations of relatives of terminally ill patients; doctors merely have a duty to care, and cannot always cure. Are we doctors so focused on technical competence and competition for post graduation seats that we have forgotten our raison d’être? The compassionate doctor is at the service of suffering humanity. The objective of medical education as articulated by the Medical Council of India (MCI) is the ‘creation of doctors who are not only knowledgeable and skilled but ethical, responsive and accountable to patients and the community.’

Unless the MCI mandates training in ethics, communication and public health imperatives, we risk producing incomplete professionals. An IMA study revealed that most incidents of violence occurred in emergency care or intensive care situations, for reasons like response delays or demise of the patient. Breaking bad news and managing grieving relatives are communication skills that can be learnt, if integrated into medical training.A 2015 government committee is evaluating a specific law to protect caregivers, classing such offences as non-bailable. Hospitals are on alert, even mulling an emergency ‘Code Grey’ that will mobilise help for the victimised doctor, summoning the police and IMA officials. The society must eschew violence and join with medical professionals in advocating reform of a patently dysfunctional health system.

Olinda Timms

More Focus Needed on Palliative Care

This was first published in Deccan Herald on Mar 25th  2017

http://www.deccanherald.com/content/603006/more-focus-needed-palliative-care.html

The theme of the National Bioethics Conference held recently and titled, ‘Healing and Dying with Dignity: Ethical Issues in Palliative Care, End-of-life Care and Euthanasia’ evoked tremendous response from all sections of the society including health professionals. Care of the dying has not received its due attention in India despite growing numbers of aged and terminally ill population.

For the most part, hospice and palliative care is left to charitable/religious organisations whose dedicated work is limited only by resource. Very few tertiary hospitals have fully staffed and trained palliative care departments. A 2010 study ranked India abysmally low, 67 out of 80 countries, in `access to end-of-life care’.

If we are to provide humane choices for the dying, palliative care must compliment mainstream health services at every level, offering patients the right to die with dignity. The duty to care for the patient does not end when clinical interventions prove futile. Dying patients are entitled to basic physical comfort and freedom from pain, two important pillars of palliation, and respect of personal choice in refusal of surgery or invasive procedures. The doctor has a central role in providing compassionate care in end-of-life situations.

In some cases, doctors are programmed to provide aggressive solutions, no matter how distressing that is to the patient. Other times, it is the family, pleading with the doctor to ‘do all that is possible’ to reverse the dying process. At the heart of this dilemma is a collective denial of the inevitability of death and imminence of loss that can cause unnecessary suffering for patients and an undignified end, strung from tubes and tethered to blinking monitors.

Refusal of treatment is a valid option that patients can exercise consciously once the outcomes of available interventions are exp­lained. This has been largely ignored in the Indian setting where patients are often discharged when all treatments fail, and the family left to manage the patient as best they can until the end. Ironically, these are the very situations where care is most needed.

The World Health Organisation (WHO) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual’.

It highlights the families of dying patients as much in need of support and counselling as the patients. Palliative units equip family members with skills to care for the patient at home, allowing the patient the comfort of a familiar space, surrounded by family at the end. Of importance is attending to the spiritual and psychological needs of the dying person.

Religious rituals, prayers, reconciliations and farewells can ease the dying process even in hospitals. Most of all, health personnel need training to consciously include palliative care into practice so that dying patients do not feel abandoned. A cultural barrier could be the discomfort to talk about death and dying. It is considered inauspicious to talk about death, a collective social denial, so that individuals cannot share their idea of a ‘good death’ nor can they express medical preferences regarding invasive or aggressive treatment in case of terminal illness. This leads to confusion and emotional distress when the family of an incapacitated patient is faced with a difficult medical decision.

End of life decisions

It is easier for the doctor and family if there is some idea of the patient’s wish. Even when the patient is competent, there could be differences of opinion, but in such cases, the doctor is obliged to respect the wishes of the patient, if the patient is fully aware of the consequences.

Some countries permit legal documents that make end of life decisions easier. A ‘Living Will’ is a written statement of a person’s preference regarding future medical treatment when they may not be able to give consent. An ‘Advance Directive for Health’ gives power-of-attorney to a surrogate decision maker in case a person becomes unconscious. Although these instruments are not yet legal in India, they are useful to understand the wishes of the patient.

The Medical Treatment of Terminally Ill Patients Bill 2016 seeks to protect the right of every competent adult patient to take decisions regarding withdrawing or withholding medical treatment. It cautions that these patients should not be denied palliative care when they refuse treatment. While the Bill is focused on protection of doctors and patients in end-of-life decisions, it highlights this neglected area in healthcare. Unfortunately, debates on euthanasia obfuscate all discussions on terminal care in this country, totally neglecting dying patients and palliative care.

The Indian Society of Critical Care Medicine (ISCCM) and Indian Association of Palliative Care (IAPC) jointly released an ‘Integrated Care Plan for the Dying’ in 2014, bringing together doctors from critical care and palliative care to work together for better patient outcomes. The plan recognises medical futility and calls for professional honesty and sensitive communication with patients and caregivers, advocating support of the patient and the family when medical goals shift from cure to comfort.

Through ‘Pallium India’ (1993), Dr M R Rajagopal pioneered palliative care units throughout Kerala and other states over 20 years. Today, Kerala is the only state with a working Palliative Care Policy that reaches every district in the state.

Commitment to care for the dying requires inclusion of this subject in the medical curriculum, elevation of palliative care to a speciality like geriatric care, and establishment of palliative care units in every hospital. As a society, we need to get comfortable about discussing death, sharing our wishes and concerns with our family.

Olinda Timms

Rare Diseases: Too Rare to Care?

This article was first published in Deccan herald on March 4th 2016

http://www.deccanherald.com/content/532510/rare-diseases-too-rare-care.html

Once again, Suniti had to excuse herself from an evening of celebration with her friends. She was exha-usted and needed to take her pa-ck of medications to be fit to work the next day. While earlier she needed help to set up the subcutaneous infusion pump, these days she is able to introduce the needle bravely into her own arm. Suniti is 25 years old and living with Thalessemia; a rare inherited genetic blood disorder that produces defective haemoglobin in the body, resulting in severe anaemia. The drug infusion will remove the excess iron in her body accumulated from frequent blood transfusions. Since the diagnosis, soon after birth, Suniti’s life has been all about health crises, hospital admissions and medication. She struggled through her education, and hopes she can cope with her new job. Tired with fighting for life, she pushes back dark thoughts of ending it all.

For the first six years of her life, Anjali was taken to a series of doctors for muscular weakness and lung infections until she developed respiratory failure and had to be ventilated. At that late stage she was diagnosed to have Pompe disease, a rare genetic disorder that affects glycogen storage resulting in damage to multiple organs and muscles in the body. Without treatment the prognosis was poor and Anjali’s parents left no stone unturned, even selling their land and borrowing from family, to provide medical care. Today she attends class 10; an ambulatory ventilator is her constant companion, connected through a tracheostomy to her lungs. Her enzyme treatment costs Rs 1.25 crore a year and supportive care costs an additional Rs 40,000 a month.

Each year, Global Rare Diseases Day is celebrated worldwide on the last day of February. Also called ‘orphan’ diseases, they affect a small percentage of the population and are usually genetic in origin. There are around 7,000 rare diseases reported worldwide, and 50% are detected soon after birth. The WHO defines a disease as rare when it affects less than 1 in 2,000 people; the more familiar being Haemophilia, Thalessemia, Duchenne muscular dystrophy, Hirschsprung disease and cystic fibrosis. The Organisation for Rare Diseases India reports around 70 million Indians affected by rare diseases, almost one in 20 people. The ethical issues relate to the neglect of these patients, who are virtually overlooked by health services, government agencies and health insurance. There is no government policy that addresses this health need, and patients and families are left to fend for themselves.

Inaccessibility of drugsDrug companies spend a fraction of R&D budget on orphan drugs (used to treat orphan diseases), as the market is small. This has resulted in insufficient approved medication for these patients; where available, they are prohibitively expensive. Enzyme drugs available today are out of the reach of most patients. With no treatment for most of these rare diseases, patients have to rely on supportive and preventive measures and given the inevitable periodic hospitalisation, costs involved are crippling. Needless to say, health insurance plans will not cover hospitalisation costs or medication for these patients.

A critical factor is early diagnosis, which is a major challenge. Amidst the preponderance of malnutrition or infectious disease, paediatricians could easily miss rare diseases, as they could be difficult to spot. Delays worsen prognosis, limit treatment options and increase the cost of care. Sometimes the patient is moved through orthopaedics, psychology and neurology before a diagnosis is made. Genetic testing has assisted in diagnosis of patients as well as family members, although more than one test may often be required. Even here, costs range from Rs 6,000-60,000. Also, there is a desperate shortage of trained genetic counsellors to guide patients through the emotional trauma of diagnosis.

How can these patients claim their constitutional Right to Health in a country where the budget for health is so shockingly inadequate? While health prioritisation may seek to utilise resources where they would cover the maximum number of people, can this justify neglect of this suffering minority? Who should decide on the ‘common good’ and how resources should be justly distributed? Adoption of a policy to address the needs of these patients will be a first step. Most rare disease societies in the country are initiatives by survivors or families, who work with doctors, geneticists, drug companies and the government to save lives. We cannot lose sight of this vulnerable group, for, in the words of Martin Luther King Jr, ‘of all the forms of inequality, injustice in healthcare is the most shocking and inhumane’.

 

Olinda Timms

Commercial Surrogacy risks Exploitation of Women

First published in Deccan herald on Nov 6th 2015

http://www.deccanherald.com/content/510394/commercial-surrogacy-risks-exploitation-women.html

The Ministry of Health and Family Welfare has called for comments on the proposed Assisted Reproductive Technology (ART) Bill 2015 soon to be tabled in Parliament. This Bill attempts to institute governing structures for and supervision of infertility clinics. By far, the most controversial issue is this area is commercial surrogacy arrangement. In 2005, the ICMR National Guidelines for Accreditation, Supervision and Regulations of ART Clinics allowed commercial surrogacy in India.

This inexplicable and unjustifiable decision shocked civil society and the medical fraternity, as commercial surrogacy is strictly banned in almost all countries of the world. Since then, with every scandal or tragedy involving exploitation of surrogates or abandonment of children, the image of India has been tarnished and tagged with derogatory terms like ‘rent-a-womb’ and ‘outsourcing babies’.

The main beneficiaries of these arrangements would be the clinics offering these services to well-heeled affluent clients from abroad, who are delighted with this form of medical tourism that allows surrogacy arrangements for a fraction of the cost abroad. Vocal protests by women’s groups, human rights groups and other professionals against this blatant exploitation of poor and vulnerable Indian women have been ineffective. The government has remained silent and continued to allow vested interests to dictate policy in this area.

The experience of Indian surrogate mothers is heart rending. Procured mostly from slums through agents, these women are removed from their homes and incarcerated in hostels until the surrogate child is born. Unempowered and desperate, the women undertake the risk of the additional pregnancy, clinical procedures and delivery for the monetary benefit they will bring.

To increase the chance of success, surrogates are implanted with multiple embryos and often have to carry twins, undergo foetal reduction procedures and agree to Caesarian section for the safety of the child. The HBO documentary ‘Outsourcing Embryos’ by journalist Gianna Toboni is just one of many painful exposes on the darker side of surrogacy in India.

Children born through surrogacy are also vulnerable. If the commissioning parents change their mind and refuse the child, it is left for adoption at a state orphanage. When foreigners are involved, dissimilar country laws regarding adoption and citizenship create complications that can be unfair and detrimental to the child.

The tragic story of Baby Manji, a surrogate child born in India is still fresh in the collective mind. Abandoned in India by a Japanese couple who got divorced just before her birth, she was later claimed, with special permission, by her Japanese grandmother on the guarantee that the child would be assured Japanese citizenship.

In another shocking case in 2012, an Australian couple accepted only one of a pair of twins born through a surrogate arrangement in Delhi. They arranged to have the other child adopted by a couple in India. After this turned created international furore, Australian authorities agreed to confer citizenship on the abandoned twin if the adoption was illegal. This raises the spectre of child trafficking and commoditisation of children in the absence of adequate oversight.

In response, the ART Bill 2015 proposes that commercial surrogacy be allowed only for foreigners married to Indian citizens, overseas citizens of India (OCI), people of Indian origin (PIO) and non-resident Indians (NRI). This amendment does not fully address the issue of conflicting country laws relating to citizenship and adoption and exploitation of women.

This very year, two other Asian countries have toughened legislation in this area. Thailand has banned commercial surrogacy for foreigners and same-sex couples following a scandal involving ‘Baby Gammy’, a surrogate twin abandoned in Thailand as he had Downs syndrome, while his healthy twin sister was taken abroad.

Nepal, too, has banned all surrogacy arrangements in response to the public outcry over selective airlifting of surrogate babies in the wake of recent earthquake. The rescue was privately organised by affluent commissioning couples, unmindful of the surrogate mothers left behind. The irony of this story is that the surrogate mothers were mostly of Indian nationality, as Nepal does not allow its own citizens to enter into commercial surrogacy arrangements.

Multi-million dollar business Surrogacy in India is now a multi-million dollar business offering the attraction of lower costs, permissive laws and availability of surrogate women. There are many who are profiteering from promoting surrogacy, for medical indications that warrant surrogacy are extremely limited. This blatant exploitation of vulnerable women in the name of medical treatment is unacceptable.

When poverty drives women to risk their mental and physical health, even using their bodies for financial return in this manner, dignity of the human being and respect for motherhood is undermined. Just as commercial organ donation was prohibited in India by the Transplantation of Human Organs Act 1994, commercial surrogacy must not be allowed, as these contracts are unconscionable, unenforceable and unethical.

Is it possible to put a price on the human body or an organ? For this reason, organ donation, blood donation and even human cadaver donation are altruistic. As in the case of organ donation, altruistic surrogacy arrangements could be allowed, with adequate regulation and oversight.

There is still a long way to go in providing protection, safety and well-being to every woman and girl child in India. Let this not be one more avenue of possible exploitation, whether by foreigners or Indians. We have the responsibility to ensure that the proposed Assisted Reproductive Technology Bill 2015 is reviewed.

The legislation must reflect this country’s commitment to human rights and children’s rights as signatories to the international charter of rights. In a country that is striving to ensure that women are included, educated, empowered and have a voice in the democratic and social arena, commercial surrogacy has no place at all.

Olinda Timms

Growing Concern over cases of Hospital Acquired Infections

First published in Deccan Herald on Feb 19th 2014

http://www.deccanherald.com/content/387113/growing-concern-over-cases-hospital.html

 

Often considered a negative fallout of modern medical care, Hospital- Acquired Infections (HAI) are rarely highlighted but remain an ever-present danger for patients and an enormous challenge for hospitals today. Also called Nosocomial infections, HAI refers to an infection not present in the patient at the time of admission into hospital but which begins two or more days later. Depending on the condition of patient, this infection increases morbidity, requires additional treatment and extends hospital stay, even proving fatal in some cases.

The incidence of HAI ranges from 5 to 10 per cent in developed countries but can be as high as a staggering 25 per cent in developing countries. In India, current data is limited but the overall incidence can be extrapolated from studies done in hospitals in Mumbai, Delhi and other places. The picture that emerges is deeply disturbing.

Medical personnel are aware of the enormity of this issue but the burden of work, economic constraints and pressure from management have blunted their response. Unsuspecting patients, unaware of the cause of HAI, adopt a fatalistic approach to hospital infections that can, in fact, be prevented and controlled.

The most common HAIs are surgical wound infection, urinary tract infections, respiratory tract infections, vascular infections and septicemia. The pathogens involved are gram-positive and gram-negative bacteria, pseudomonas, anaerobic organisms, viruses and fungi. In immune compromised patients, as in hepatitis and cancer, even harmless bacteria within the body can become the source of infection. HAI may occur during surgery, introduction of catheters, contaminated dressings and unhygienic handling of patients by hospital staff. In Intensive Care Units (ICU) the infection rates are higher due to increased invasive procedures and handling. Patients in ICU usually have compromised immunity and cross-infection between patients is a grave possibility.

The problem of HAI is compounded by antibiotic resistance, which is reaching crisis proportions due to irrational use of antibiotics, self-medication and over-the-counter availability of drugs. Most alarming is the emergence of ‘Super bugs’, drug resistant bacteria like MRSA and NDM-1 that can overwhelm the body’s immunity and spread rapidly in hospitals, undeterred by the present armamentarium of antibiotics. The race to develop ‘super-drugs’ to combat such bacteria is ongoing and may be lost, unless a concerted effort is launched to rationalise drug use and bring HAI under control.

HAI is one of the leading causes of hospital morbidity and mortality. The quality of the hospital is quantified by its adherence to standards of asepsis, cleanliness, awareness of care protocols and personnel commitment to protection of patients from nosocomial infections. However, HAI statistics are rarely published by hospitals, leaving patients in the dark. Unflattering reports on HAI rates by WHO and journals of epidemiology in the media have greatly tarnished the image of India as a Health Tourism destination.

Safety promotion

The health ministry responded with regulations that mandate the accreditation of all hospitals and health care services by the National Accreditation Board for Hospitals (NABH), a quality control organisation. An important quality standard is infection control, requiring meticulous cleanliness, asepsis and infection control protocols including periodic testing and reporting. Even under threat of losing license to operate, the response to NABH has been slow, with only 200 hospitals out of 16,000 receiving accreditation so far, of which only 15 are state-run healthcare institutions!

Government budget outlay for health will need to be far higher that the present 4 per cent to improve conditions of public hospitals. It is insurance companies who are driving NABH accreditation and quality control in order to keep down healthcare costs that threaten to erode profits and drive up the insurance premiums. The social, economic and personal repercussions of HAI are immeasurable.

Uninsured patients have to personally bear the cost of the additional stay in hospital, medications, loss of workdays and physical malaise. Such healthcare burdens remain the primary cause for the slide into poverty in India.

Is quality and patient safety being viewed by hospitals as an expense rather than a responsibility? The excuse that it will drive up healthcare cost is lame, at best, as patients themselves have to bear the cost of HAI. In western countries, where there is higher awareness of safety standards, hospitals are slammed with lawsuits in cases of nosocomial infections. Why do our patients meekly accept the catastrophe of HAI when it occurs? When NABH protocols of patient care and infection control exist in India, it is totally unethical to allow profit concerns to dictate safety practices. It should not require a public interest litigation to prioritise patient safety.

In response to the HAI crisis, the NABH has organised specific certification programmes like ‘SAFE-1’ that enable health organisations to upgrade their infection control practices. The Medical Council of India has recommended an 18-hour teaching module in the undergraduate curriculum from next year on this aspect of patient safety. Hospital Infection Society of India (HISI) is an association of medical professionals with a special interest in prevention and control of hospital infections working to build awareness, provide training and disseminate best practices in this area. If one out of four hospital patients are victims of HAI in our country, this is a healthcare concern that simply cannot be ignored.

Olinda Timms and Prakash Rajagopal