![]()
1 Poverty of dying in India
A comparative landscape
Indians are dying poorly. Most of us know this from our encounter with human mortality in some way or the other, but it also got an academic confirmation with the Singapore-based Lien Foundationās commissioned study on quality of death. The study based on a survey of 40 countries compared nations under four headings: End-of-Life Healthcare Environment, Availability of End-of-Life Care (EoLC), Cost of End-of-Life Care and Quality of End-of-Life Care, on the implicit assumption that the need of a dying person remains same across different locations.1 It rated India as the least-preferred nation with a low score on all four indices. India held the last position in the overall Quality of Death index ā 39th position in the category of Basic EoLC, 35th position in the Availability of EoLC, 39th position in the Cost of EoLC and 37th in the score for Quality of EoLC. In a more recent study, the country rates as 67th among 80 nations based on a new version of the Index, which expands its scope to take into account global developments in palliative care (The Economist Intelligence Unit, 2015).2
For those wary of statistical evidence, Aruna Shanbaugās case is still fresh in our minds as an illustration. While the battle to legalize euthanasia is highly debated in many discussion forums and the country awaits a deliberated law on the issue, Mumbaiās King Edward Memorial (KEM) hospital had been a witness to the slow aging and dying of a bright, young and capable nurse in their own precinct after being raped and brutally strangulated with a dog chain by a sweeper at the same hospital in November 1973. Aruna was 67 when she died with multiple morbidities, brittle bones, rotting gums and a gasping body. Her life indeed was of little worth, but she had some sort of an iconic value for the nursing staff of the hospital, prompting the Supreme Court to rule out euthanasia as a nonpermissible option in the wake of not having a direct indication of Arunaās wishes and views. Meanwhile, many, including her biographer Pinky Virani, had considered it as one of the most gruesome stories of slow, painful dying in a country that has not yet laid down a reasoned plan of action for ensuring a dignified exit. She had filed a petition with the Supreme Court of India pleading for euthanasia as a means to terminate Arunaās life with dignity. After much deliberation, the petition was turned down in 2011, almost a year after it was filed. The rather stoic decision of the court testifies to the nationās inability to grant peaceful exit for a person who had exhausted all possibilities of dignified living. However, the court permitted passive euthanasia on a case-by-case basis. Recently, in February 2014 the Supreme Court also referred the matter of legalizing euthanasia to a five-bench jury in response to a public interest litigation filed by an NGO in 2008.
Arunaās case would have shocked the conscience of the Indians, as did Karen Ann Quinlanās tragedy in the U.S. way back in 1976.3 But while the 20-year-old Karen in a comatose condition had moved the Americans to plead for euthanasia in the U.S., the deadly silence of a vegetative and semicomatose Aruna Shanbaug for 37 years has as not yet melted the Indian hearts. It was alleged by some that in contrast to the old and decaying Aruna, photographs of her youthful days were widely circulated in media to craftily hide her suffering in a hospital bed for over three decades.
Arunaās story, emotional and sentimental, also smacks of a poor end-of-life care perspective in India. It betrays an overzealous state with little concern for resources on an almost lost case, the never-to-die attitude of the medical establishment that patronizes such cases while remaining ironically immune and even a silent spectator to the agony of innumerable people dying wretched deaths in hospitals, homes and even on streets, seething with pain and nowhere to go. While it tolerates the use of expensive life-extending technologies on frail elderly in the hi-tech, sophisticated, state-of-art ICUs in acute and tertiary care hospitals in India, many young people die for want of simple remedies. However poignant the stories of such āotherā deaths may be, for the time being, we choose to concentrate on end-of-life care for the elderly ā a term we reserve for understanding the experience of dying rather than the experience of living with aging. Before we start our explorations in India, a brief contextualization of the issues at the global level would help to appreciate its seriousness and limitations in the homeland.
Dying old in the West
With life expectancy having increased to 76 years for men and 82 for women according to the World Health Statistics, 2014 and replacement fertility rate at only 2.1 births per woman in most of the industrialized nations, dying has become inextricably linked with aging as a result of this demographic shift. Global demographic data indicates that number of people aged 65 years or older is projected to grow from 524 million in 2010 to nearly 1.5 billion in 2050, with most of the increase taking place in developing countries (WHO, 2011). The category of the āoldest oldā constitutes 12 percent in developed nations and 6 percent in less-developed countries. In many countries, the oldest old are now the fastest growing part of the total population. On a global level, the 85-and-over population is projected to increase 351 percent between 2010 and 2050, compared to a 188 percent increase for the population aged 65 or older and a 22 percent increase for the population under age 65. The global number of centenarians is projected to increase 18-fold in 2050 from what was the number 50 years ago (United Nations, 2000). This growth is particularly significant because people accumulate long-term illnesses as they age, creating greater demand for palliative and end-of-life care services.
But care for the dying elderly is not an easy task. Elderly people die following four different trajectories that at times overlap with one another: (1) sudden ā like severe stroke, myocardial infarctions or even accidents, (2) terminal illnesses with gradual decline, (3) organ failure and chronic suffering and finally (4) bedridden with frailty (Lunney, Lynn, Foley, Lipsonand Guralnik, 2003). Lengthy chronic illnesses and long periods of functional decline as in trajectory 2, 3 and 4 make dying a protracted affair. It is obvious that dying from various age-related chronic diseases and multisystemic illness, such as ischemic heart disease, cancer, stroke, arthritis, chronic obstructive pulmonary disease, dementia, depression and several others, make dying not only slow but challenging for the caregivers also. It is, as Nuland suggests, a messy affair (Nuland,1994).
Protracted dying, when in hospitals, makes a disproportionate demand on health resources. Hospitals, which are already under pressure and, according to some observers, may become extinct soon due to escalating cost, are overstrained by the influx of a large population of elderly who are fast approaching their endings. An analysis in the U.K. showed that hospital-bed use increases with age, with those under 65 years using one-fifth of a bed day per year, whilst the average for over 85 years is five bed days per annum. Under such circumstances, calls for more prudent use of medical resources appear quite valid. It was 22 years ago that Daniel Callahan in the U.S. argued that expensive medical care needs to be prudently decided and rationed carefully for elderly patients. As a cofounder and President Emeritus of the Hastings Center ā a nonpartisan, nonprofit, independent bioethics research institute in New York, Callahanās highly controversial book Setting Limits: Medical Goals in an Aging Society made the case for limitations of care based on age ā a topic that provoked intense, if sometimes hyperbolic, arguments in health care debates (Callahan,1995). But even earlier, Veatch (1979) had made a strong case in favor of a greater distribution of resources for the young in comparison to the elderly. Since these early warning bells, there is now a growing realization that aging of populations gives rise to new issues related to health and care services for the dying and require fresh perspectives on death and dying.
Improving the experience of dying
In the first place, as mentioned above, since dying has become more expensive, there has been an expressed concern to reconfigure health policy in a way so as to make EoLC a public health agenda. One way of doing so involves strengthening primary care, which has the potential to provide people with a gateway into the health care system and ensure continuity and coordination of care provided by different levels of health system and professionals. Cross-sectional studies show that primary decision aids can be developed for chronic conditions ā Type 2 diabetes, osteoporosis, benign prostatic hyperplasia or even mental conditions, and it is this aspect of its proven success in chronic diseases that suggests the need to develop primary centers in order to improve end-of-life care as a public health measure (Legare, 2009). Subsequently, health forums and organizations, such as McMaster Health Forum (2014) and Ottawa Health Research Institute (2014), have supported patient decision aids to enable them to engage with physicians to prioritize their complex and multiple-care goals.
Many primary health facilities are now equipped to deliver palliative care, which is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness. It provides prevention and relief of suffering through early identification, assessment and treatment of pain and other problems ā physical, psychosocial and spiritual. In addition, it helps patient autonomy in decision-making. Its multidisciplinary approach has special relevance for the elderly who suffer from chronic ailments and multiple morbidities. Unfortunately, for a long period of time, patients received palliative care only when death was imminent, although it professes to neither hasten nor postpone it. This approach was problematic for the aging population and their families who experienced several difficulties and complexities throughout their illness trajectory, almost on a daily basis. The revised model now suggests initiation of palliative care from the early stages of illness, often along with curative treatment. However, health care systems have to be flexible enough to be able to incorporate it within mainstream health delivery (cf. Davies and Higginson, 2004).
Incidentally, countries where palliative care (and implicitly end-of-life care too) is at the most advanced level of integration with the mainstream service provision, commendable work has been done within public health framework to deliver geriatric care (Alliance and WHO, 2014). In most European and Scandinavian countries, for instance, care for the elderly is addressed through Long Term Care (LTC) program that is provided through hospitals, nursing homes and social care homes. Conceptually, LTC not only addresses issues related to illness but also caters to needs during end-of-life, at least in terms of accessing high-quality medical services. But robust LTC programs can only be designed on the basis of a very viable primary health care system. Silveria and Formanās (2012) field study show how Primary Care Providers (PCPs) in the United Kingdom play an important role during EoLC by maintaining a continuity of care for the patients. They assist in planning advanced treatments and EoLC decisions, attending to patientsā emergent needs, bringing flexibility in scheduling appointments, facilitating information-sharing with outside providers and coordinating care within primary care practice to address patientsā needs quickly, and even acting on behalf of their patients. However, in recent times, a specialized approach to disease and treatment has undermined the role and significance of PCPs in many places, and many dying elderly continue to rely heavily on hospitals. But empirical research strengthens a widely favored opinion that primary care is the most suitable option for elder care, as it deals with chronic illnesses, lifestyle issues and preventive care. Endorsing this idea, WHO has collaborated with Health Ministries of different countries, both developed as well as developing nations, to produce āAge-friendly PHC Toolkit.ā So far, the toolkit has received support from different agencies and forums like WONCA (World Organization of National Colleges and Academic Associations of General Practitioners/Family Physicians), IAGG (International Association of Gerontology and Geriatrics), IFA (International Federation on Ageing), HAI (HelpAge International) and the NYAM (New York Academy of Medicine), among others. This venture nurtures the mission to make primary health centers and their caregiver staff aware, sensitive and competent to tackle the growing morbidities of the elderly population. The toolkit suggests comprehensive and integrated care, continuum of care, adequate physical and social environment and upgrading human skills in caring elderly patients as important means to make PHCs age friendly.
In addition to the above measures, these countries are making attempts to cut down hospital expenses for elderly by evolving regulatory measures to curtail use of invasive technologies and by devising care pathways. It may be mentioned that by and large, many governments ā even those like Britain ā have not paid due attention to formal technology assessments and their distribution among different groups of population. Restrictions on the production, use and distribution of medical technologies are weak in most countries in comparison with policies regulating therapeutic drugs, and are mainly advisory rather than binding. As a result, a technology-oriented, expensive and primarily curative biomedicine has been left with little option other than freeing hospitals from the clutter of old and dying people. This is more problematic in those countries that have centralized national health care systems, or where a sizeable chunk of health expenditure is borne by the State. Many advanced countries have therefore developed improved ways of negotiating and identifying death through protocols like Gold Standards Framework (GSF), which reduce unregulated hospital admissions though not compromising on care. The GSF is considered to be a cornerstone of the United Kingdomās end-of-life care program for letting a person die a āgood death.ā It is also recognized as ābest-practiceā in other countries outside the U.K., such as the U.S., Australia, the Netherlands and Belgium.
GSF ensures that a high-standard care is delivered. It works through a well-charted framework extending from primary to tertiary level of care with thrust on coordination of stakeholders at all levels. This essentially includes patients and their family and medical and nonmedical professionals. Uniquely, GSF ensures that out-of-hour care service is available even though it reduces unregulated hospital admissions. It restricts all mindless hospital admissions in the last few weeks of survival and draws all possible resources available at the primary-care level near to the dying persons that are consistent with the personsā needs and wishes. Practicing GSF in community starts with an accurate prognostication of the personās survival, which might be as long as few years to as short as few days only. This is followed by close assessment of the dying personsā pain and other symptoms, and finally, it involves preparation of a care plan considering all risks that might arise in the future. Nationwide audits done periodically to assess the benefits of GSF have shown that it has indeed halved total avoidable hospitalization during end of life while giving maximum care and comfort at the personās preferred place of dying. In one such audit of 2010 covering seven care homes of Scotland, GSF training program has reduced within a span of one year (2007ā8) āavoidable hospitalizationā during the last two months of life from 31 percent to 24 percent, ārelated days spent in hospitalsā from 82 percent to 44 percent and ātotal avoidable hospital deathsā from 15 percent to 8 percent (Hockley, Watson, Oxenham and Murray, 2010). The evidence also points out that by reducing hospitalization it has contributed toward cost savings of National Health Services (NHS) as much as Ā£30ā40 million/year/care home.
However, the success of EoLC in many countries, particularly the U.K., which figures high in quality of dying, rests on another pivotal structure ā the Liverpool Care Pathway (LCP). Overseen by the Marie Curie Palliative Care Institute, LCP is widely accepted as a best possible model of care for dying persons in the last few hours of life. It was developed by the Royal Liverpool Hospital and the Marie Curie Hospice during the late 1990s. With time its popularity grew. LCP was identified as a model of best practice by several organizations: NHS Beacon program in 2001, the Cancer Service Collaborative Project and the National End-of-life Care Program during 2004ā7. It was recommended in the National Institute for Health and Clinical Excellence (NICE) guidelines to facilitate supportive and palliative care for patients with cancer in 2004 and also got included in the āOur Health, Our Care, and Our Sayā white paper in 2006 as a strategy worth rolling out across the U.K. Often considered in tandem with GSF, it becomes more important when dying is irreversible. It then sets to review all clinical procedures and aligns them in accordance with the patientās comfort and ease. This might result in discontinuation of forceful feeding (although drip is sometimes allowed on case-by-case basis), symptom control or even life support. Apart from the U.K. where LCP originated, it is practiced in 21 different nations (Murphy, 2011; Constantini, Ottonelli and Canavacci, 2011). Credibility of LCP is, howe...
