The Tribune

The aged and infirm are shockingly neglected in The Bahamas - and any NHI scheme must address the provision of hospice care, Richard Coulson says.

‘Being Mortal’, by Dr Atul Gawande, was published in 2014 and surprisingly became a New York Times non-fiction best-seller.

Already read by many members of the Bahamian medical community, it should be required reading for all our citizens who face the problems of caring for parents, friends or relatives on the far edge of aging when they are no longer able to look after themselves.

Now that a National Health Insurance (NHI) scheme is close to becoming reality, we should look closely at what it will, or will not, provide for those who are beyond curative care and must make ready for predictable death.

Dr Gawande is a highly-trained American physician of Indian parentage. An established surgeon at a prominent Boston hospital and a professor at Harvard Medical School, as well as an author frequently appearing in ‘The New Yorker’ magazine, he is no hysterical alarmist, but is deeply disturbed by the failings of modern health care to deal with the advanced elderly. As he writes, “If your problem is fixable, we know just what to do. But if it’s not? ... You don’t have to spend much time with those with terminal illness to see how often medicine fails the people it is supposed to help”.

His argument runs that after all the superb technology found in a modern hospital, intensive care unit (ICU) or cancer centre - MRI imaging, chemotherapy and radiology, heart bypass, tumor surgery, kidney dialysis, defibrillators and ventilators, IV tubes, oxygen pumps - reaches its inevitable point of failure, the typical physician team says “we have done all we can do” and leaves the patient with little succour or care to ease the final stage of life. And of course he cites instances where this very technology extends pain and suffering far beyond the patient’s (or the family’s) rational wishes.

Dr Gawande’s book makes clear the historical perspective for today’s predicament. Two hundred years ago, there were few “aging” persons. By 40 most were dead, felled by war, accidents, infectious epidemics or abrupt submission to illness for which current medicine had no cure. Since then, particularly since World War II, the impressive revolution in medical expertise together with modern sanitation have radically changed the picture. From 1902 to 2004, life expectancy in the US rose from 45 to 75.7. More significant has been the increased percentage of the over 60 population in the developed countries: from 12 per cent in 1950 to 22 per cent in 2010 and a projected 30 per cent in 2050.

But this stretching longevity is not an unmixed blessing. It has not been fully matched by better end-of-life care. Dr Gawande notes that relatively few physicians specialise in geriatrics, since it traditionally pays less well than direct treatments like oncology or heart surgery. Nursing homes proliferate, but rarely provide a warm sense of wellbeing. The Bahamas is not exempt from these dilemmas, which surely include a growing percentage of those over 70 (and even younger) who have been diagnosed as incurable and cannot benefit from further hi-tech procedures.

Dr Gawande is not short of remedies. He is a firm believer in palliative treatments and hospice care, where physicians, nurses and caregivers trained in geriatrics remove patients from hospital surroundings and care for them in hospice centres or, very often, at home with daily visits from professional hospice specialists. The objective is not to “cure” the individual - that option is past - but to make the last days, weeks or months as pleasant as possible far from the coldly impersonal surroundings of a hospital. He writes at length about his father, a physician himself, who in his few remaining days was released from hospital to die under hospice care in the comfort of his home.

In my view, it is a shocking failure of our medical system that any organised hospice system is unknown here. The well-intentioned Persis-Rodgers Home looks after a limited number of the aged, and I understand that buried in Princess Margaret Hospital there is a ward of elderly patients who will never leave the hospital alive, since professional hospice care service cannot be found elsewhere locally, although it has been available, even in small communities throughout the US and UK, beginning in the 1960s, financed by public and private sources including Medicare. Our new NHI must be framed with a similar scope. As demographic patterns and work demands change, we will have a smaller “homebody” population capable of looking after an ever-growing number of the barely competent aged.

Dr Gawande’s book, impressive as it is, surprised me by saying virtually nothing about the administrative obstacles and the costs of the high-level health care available in the US, and that may be feared in The Bahamas. The many patients whose treatment he describes in detail appear to float in and out of intensive care hospitals with none of the bureaucratic hassle and complex payment arrangements that surely are required under either ‘ObamaCare’ or private insurance schemes. Except for the very wealthy or cosseted senior executives, he gives a rather rose-coloured picture of the difficulties, delays and uncertainties facing the typical patient.

Also, I was struck by the ambivalent position he takes on that admittedly controversial subject, assisted suicide. He, and most doctors, accept that where pain is intense to the point of being unbearable, removal of a respirator is acceptable, as are doses of narcotics or sedatives even if they may knowingly speed death. But he appears dubious about the practice of prescribing a toxic drug such as Nembutal, to be taken at the patient’s option. He writes that “suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary ... I would support laws to provide these kinds of prescriptions” - implying that no such laws exist.

In fact, the 1997 Oregon Death with Dignity Act does just that, under strict controls requiring two physicians and sometimes a psychiatrist, to certify both intense suffering and sanity of the requesting party. The procedure is closely regulated by the Oregon medical authorities and has been copied by five other states and, in different forms, by several European nations.

Dr Gawande is concerned that we may “let providing this facility divert us from improving the lives of the ill”. This fear seems unfounded. He cites cases where hospice care was provided to the last moment, and concedes that many patients accept the death prescription and then never use it. In 2015, official Oregon records show 218 prescriptions were given and only 132 actually ingested. Although it’s unlikely that a Death with Dignity Act will in the foreseeable future be adopted in The Bahamas with its strict views about the sanctity of human life, views do gradually change and a positive movement is slowly spreading through other American states and the UK. A detailed recital of all the pro and con arguments – medical, social, religious, economic – can be found in the comprehensive book ‘Death with Dignity: the Case for Legalizing Physician-Assisted Dying and Euthanasia’, by Robert Orfali.

Whatever the prospects for Death with Dignity, Dr Gawande demands more compassionate care for the terminally ill. Rather than simply offering them an array of alternative cures, with more surgeries, more professional visits and more tests, he urges that every attending physician take time for frank two-way discussions when the patient explains what is most important to him – living as long as possible, or as well as possible? Alone, or surrounded by family? With prayers and music or silence? - and the doctor explains, even recommends, what is feasible. He continually emphasises: it’s not a question of the doctor demonstrating all his skills, but of satisfying what the patient really wants. The physician must offer “pastoral” care, not simply technical treatment, no matter how expert.

He is not a voice in the wilderness, but is supported by such popular works as the inspirational “How We Die”, by Dr Sherwin B Nuland, and the practical “The Conversation: A Revolutionary Plan for End-of-Life Care”, by Dr Angelo Volandes, a virtual guide book to the discussion that should be held between patients, families and physicians in order to change the prevalent scene where 80 per cent of Americans report they prefer to die at home but only 24 per cent of those over 65 get that wish, with 63 per cent expiring in hospitals or nursing homes. “The Conversation” includes invaluable appendices describing how to initiate these discussions and what they should include.

All the foregoing studies indicate how our NHI should make room for hospice care, generally limited to those with a life expectancy not exceeding six months, whatever their age. As a first step, there is no need to spend heavily on bricks-and-mortar physical facilities, as the service can be provided in the patient’s own home, using a central office equipped with a supply of mobile hospital beds, wheelchairs and other basic medical items for residential installation This office arranges scheduled visits by specialised supervising doctors, plus nurses to monitor prescribed medications and aid assistants to handle feeding, dressing, cleaning and toilet functions.

All this can be supplied at reasonable cost, as I observed last year in the Mexican city of San Miguel de Allende, where a civic-minded group of local citizens and US home-owners banded together to organise and finance home care service for Mexicans not far above the poverty line. A similar privately backed system could be organised here, but to provide wider coverage and institutional permanence, it should better be sponsored as part of NHI.

As soon as NHI is ready to roll out phases four and five of its operations, for catastrophic coverage and full benefits coverage, it should include specific coverage levels for hospice care.

Of course that still begs the question of how any type of advanced treatment is to be paid for. Obviously, unlike the initial $25m budgeted for phase three (primary care), more elaborate services cannot simply be charged against the central fund. Some type of tax, insurance premium or user’s fee must certainly be imposed – but government seems too worried about political repercussions to reveal this tough reality to the long-suffering public.

In any event, even before financial details are clarified, a special committee of physicians, clerics and social workers should be created to set the plans for hospice care. The plight of our terminally ill population cannot, in all charity, continue to be ignored.

• Richard Coulson is a retired lawyer and investment banker born in Nassau and from a long line of Bahamians. He is a financial consultant and author of A Corkscrew Life - adventures of a travelling financier.