The Dying Keats (Book Review)

Author: Brian Livesley. Published by Matador, 2009

ISBN 978-1848761-711

The Dying Keats was written for the 20^th Biennial Keats’ Memorial Lecture in 2009. With 50 years of experience of caring for the elderly and the dying, its author, Professor Brian Livesley, has successfully researched and crafted a succinct argument for improved medical care for the dying; drawing on the distressing death of the 19^th century poet and apothecary, John Keats, in order to illustrate how doctors so often fail their dying patients.

Keats died at a young age from tuberculosis. Denied drugs such as opium to ease his terminal suffering, he experienced distressing symptoms up to his death; causing him to describe his final days as ‘this posthumous life of mine’. Livesley describes this as the ‘Keatsian Experience’ and compares it to euthanasia in the truest sense of its meaning; that being ‘a good and comfortable death’.

As the author points out, it is astonishing that today’s care of the terminally ill is often little better than that experienced by Keats; believing this to be due to the reluctance of doctors to consider death as a diagnosis that requires treatment, and reminding us that ‘dying should be a humane experience for us all’. A thought-provoking read for all clinicians.

(First published in Pulse Today, July 2012

http://www.pulsetoday.co.uk/main-content/-/article_display_list/14263504/book-review-the-dying-keats-a-case-for-euthanasia-by-brian-livesley)

So much for the Money; what about the Care?

The Government recently published the latest Social Care White Paper; which starts to address the problem of financing the care of elderly people. In outline, there will be a scheme whereby those receiving care will not be forced to sale their homes to pay for that care. Instead, they will be eligible for a council loan, repayable from their estate after death. With implementation postponed until 2014, the detail has yet to be revealed. However, if the recent Health & Social Care Act is an illustration, the ultimate Act stemming from this White Paper will be a hotchpotch of compromise, inadequately thought-through process and a few nasty surprises, which will fall short of appropriately addressing the real issues.

One of the real issues for me is not so much the money, but the quality of care. Having to sell one’s home to pay for care in a residential home may be emotive, but ultimately someone has to pay. After all, money is only a tool to obtain what we desire. When we are elderly and infirm, what we truly need is the security of knowing someone is properly looking after us. Sadly, for many people, that quest is an impossible one; particularly the closer we get to dying.

The physician and author, Dr Brian Livesley, addresses this issue in his book ‘The Dying Keats – A Case for Euthanasia?’. Livesley uses his 50 years of medical experience of caring for the elderly and combines it with a well-researched thesis about the circumstances of the death of the poet John Keats.

Keats, also a doctor, died in 1821 from tuberculosis at the age of 26. Well-aware of the availability of drugs such as opium, it is therefore an irony that he was deprived of medicines to relieve the distress of his final days. So distressing were his symptoms that Keats described the concluding period of his life as ‘this posthumous life of mine’; something Livesley describes as the Keatsian Experience.

Sadly, the Keatsian Experience is still endured. In 2008, 54% of the complaints about hospitals were related to the lack of care at the time of someone’s death. As Livesley states, dying should be a humane experience for us all. That the reality for many is so different is a sad indictment of the so-called ‘caring professions’. At the heart of the matter is the failure to treat dying as a clinical diagnosis requiring action.

The term ‘euthanasia’ is today frequently used as a synonym for assisted-suicide. However, the origin of the word is very different and means ‘a good and comfortable death’.  Keats lacked carers skilled in providing him with a good and comfortable death. Without those skilled carers, all the money in the world is meaningless to those in their twilight days if they are not being appropriately looked after.

So the message to the Government should be that the Keatsian Experience has no place in our time. Of course the problem of funding the provision of care in our final years needs to be sorted. However, the quality of care also needs to be considered. Getting the quality right from the moment we first need care will help ensure our closing days are also right. Without that, the Social Care Act will be yet another 21^st century political failing, and one we will all potentially suffer from as a consequence.

(First published in the Scunthorpe Telegraph, Thursday, 19^th July 2012.)

Be Careful What You Wish For

I do not normally consider myself to be a pessimist; although readers of this column may think otherwise, bearing in mind the inches of concern I have expressed over the past year in respect to the future of the NHS; I call the latter realism.

No, I am for all that, an optimist. I rejoice as each day dawns, regardless of the weather, the day of the week, or the latest damage the Department of Health might bring forth. I search for that hidden moment, event or experience that will bring a frisson of pleasure and make that day all the more worthwhile than the simple delight of being alive.

However, on three separate occasions recently, I have felt concern when others have felt joy. All three occasions have revolved around scientific ‘breakthroughs’; events which, as a scientist, I should be hailing with enthusiastic delight rather than guarded pleasure.

The first concerned the report that researchers have successfully predicted the entire genetic code of a baby. The process was fairly simple, and involved nothing more invasive than a saliva swab from the father and a blood test from the pregnant mother. ‘Magic!’ as a performing magician might say.

Being able to predict a baby’s genetic code means that it is now theoretically possible to screen unborn babies for some 3,500 disorders; which then raises the next question of what to do once we know that there is a problem. The morals and ethics of such investigations, along with the expected increase in the number of abortions, are far too complex for a short newspaper column. However, the vision of a future of designer babies does make me uneasy.

The second ‘breakthrough’ was the knowledge that it is now scientifically possible for women to store a small sample of ovarian tissue, and then have small pieces re-implanted over time in order to maintain their fertility beyond the age currently dictated by nature. Of course, the same process also delays the effects of the menopause. The latter may be welcomed by many women, and I do not blame them. However, does society really want or need childbearing by mothers in their 60s and 70s, or beyond? I will leave you to ponder your answer to that question.

Finally, quantum physicists have been rejoicing in the discovery of the long-postulated Higgs Boson, or ‘God-particle’ as it has been popularly known. This elusive particle apparently explains the force that holds the Universe together and enables stars and planets to exist. The discovery has evidently clarified one of the great mysteries of science and the world. It is one which will undoubtedly lead to other great advances in science, although exactly what is presently uncertain. Nonetheless, I feel that we should temper our excitement with a degree of caution, for mankind has not always been good at putting great scientific discoveries to the best of use.

If designer babies and fecund octogenarians do not as yet ring any alarm bells for you, then the Higgs Boson should. If you ask me why, I am not sure that I can presently give an erudite answer. However, I experienced the same pang of pessimism when reading about all three of these discoveries. The 18^th century clergyman-writer, Charles Caleb Colton, wrote ‘the greatest fool may ask more than the wisest man can answer’. In this context, I am not certain whether I am the wisest man or the greatest fool. However, I have no doubt that we should be very careful as to what it is we wish for.

(First published in the Scunthorpe Telegraph, Thursday, 12^th July 2012.)

The Delusional Art of Statistics

 ‘There are three kinds of lies: lies, damned lies and statistics.’

The quote is attributed to the 19^th century British Prime Minister, Benjamin Disraeli. What, I wonder, would he therefore make of the new iPhone app called ‘GP Ratings’, or indeed the expansion of statistical data now available on the Department of Health’s website, NHS Choices (www.nhs.uk)?

Statistics are only helpful if they compare like with like, compare data that is meaningful, and are sourced from unbiased data. Sadly, the aforementioned App and website fall down on all three counts, being drawn from a fundamentally flawed annual review called the GP Patient Survey. As a result, practices are now given a score out of ten based on patient experiences.

Now, speaking as a GP and from a personal basis, I have nothing I wish to hide from my patients or my peers. I strive to be the best GP I can. However, I am not, and can never be, perfect. That I frequently fall short of perfection is down to many different factors; an increasing number of which are totally outside of my control (lack of funding for the NHS, inflated Governmental and patient expectations, the number of hours in the day, imperfect therapies, and the mysteries of health and life that are yet to be answered by science, to mention a few). I therefore do not mind my work being compared to another GP, as long as the comparisons are fair and meaningful. Sadly, there is very little of that within the Government’s new ratings system.

Many writers in the medical press have condemned the new scores as simplistic, lacking detail and running the risk of overwhelming patients with unhelpful information. They are quite right. In many important areas, such as how well a doctor manages chronic or life-threatening illness, the information provided does not allow for meaningful judgements. Instead, the main comparisons are on factors such as how easy it is to obtain an appointment at a convenient time and how long one waits in the waiting room.

Not for one moment am I saying that these issues do not matter; of course they do. However, I would rather wait for an hour to see a doctor who is going to take my problem seriously, diagnose me accurately, treat me appropriately, explain the details to me in language I can understand, and, somewhere amongst all of that, show me a little compassion, than be whisked in and out on time, but left feeling that my issues have not been properly addressed.

Unfortunately, many of the issues the Department of Health measures doctors against are ones which are easily managed if one works in a well-resourced private institution, but will always be wishful thinking for large, underfunded, overloaded, NHS practices whose staff are trying to juggle the complex demands of patient care with training medical students and new GPs, commission local NHS hospital services, balance the NHS budget, and contribute to numerous other demands from the world of medical politics. Read the data by all means, but treat it for the crude information that it is. If it is of little use to me, in my capacity as the medical director for a Primary Care Trust, then I seriously question what real use is it to you as patients.

As Albert Einstein once said, ‘Not everything that can be counted counts, and not everything that counts can be counted.’

(First published in the Scunthorpe Telegraph, Thursday, 5^th July 2012)

The Importance of Good Communication

Communication, according to the Oxford English Dictionary, is the action of sharing or exchanging information or ideas. What the dictionary does not say is whether communication includes the concept of understanding the message the informant intended to relay. Without adequate understanding the message being communicated is lost or misconstrued, sometimes with unintended consequences.

Of course, there are those who would claim that the opposite is also of value. Some might argue that misleading communication is an art well exercised by politicians to meet their own ends. As the American author Lionel Trilling said, ‘where misunderstanding serves others as an advantage, one is helpless to make oneself understood’. Examples of that were certainly seen last week during the battle over NHS pension arrangements.

However, the language used to communicate a message is equally important as the ideas being expressed. A favourite expression of mine is ‘words mean what words say’. Naturally, it is a paramount prerequisite for good communication that both the communicator and the listener understand the meaning of the words being used. I assume that Tim Loughton MP, was not being deliberately misleading last week when he said ‘I shall be speaking about it more fulsomely later.’ Referring to a report on missing children, he probably meant to give the impression that he would speak ‘in detail’ or ‘at greater length’, and that is possibly what most people took to be his meaning. However, the word ‘fulsomely’ is ambiguous. Properly interpreted as ‘lavishly’ or ‘extravagantly’, it can also convey ‘insincerity’ to the point of being insulting. To some listeners, his message would therefore have been received in a completely different manner to that which he probably intended.

Doctors need to be good communicators if patients are going to understand the health issues being discussed. For the majority of patients, there is no point in the doctor hiding behind erudite phrases, words in Greek or Latin, or medical jargon full of acronyms, if it is hoped that the message will be understood. According to recent studies, 43% of Americans have a literacy standard below that necessary to understand health issues (see www.nchealthliteracy.org for more details). In the United Kingdom, the figure is thought to be around 12%; although these figures assume that the message is being conveyed in a language suitable in respect to its origin, dialect, complexity and accuracy as befits the recipient. The phrase ‘health literacy’ is increasingly being used in reference to such matters.

‘LSD? Nothing much happened, but I did get the distinct impression that some birds were trying to communicate with me.’ The poet, W H Auden, was clearly speaking of his experience of using an hallucinogenic drug when it said that. Nonetheless, for many people, even the most caring of doctors can leave them feeling confused and uncertain. For them, a trip to see their GP or specialist may be as equally puzzling as Auden’s encounter with his feathered friends.

The problem is not just about whether someone can read and write, or whether they speak the same ethnic language as the doctor; our population is increasingly an aged one, and even very intelligent people start to lose cognitive ability as they get older. Defined by the World Health Organisation as ‘the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions’, health literacy must be taken into consideration and appropriately addressed if we are to achieve the desired health outcomes for our communities. Doctors must remember that patients will not always say that they do not understand; for their part, patients must not be ashamed or intimidated, and must tell the doctor if they do not understand what is being said. Getting the health communication wrong can be costly to the individual and society, in terms of deteriorating medical conditions, more expensive medical treatment, prolonged hospital stays, and increased risk of death.

That said, the French poet Charles Baudelaire once declared that ‘It is by universal misunderstanding that all agree. For if, by ill luck, people understood each other, they would never agree.’ Perhaps that is an apt statement for tautologous political circles, but not one for an effective health service. Unlike Sofia Coppola’s film, health messages should never be lost in translation.

(First published in the Scunthorpe Telegraph, Thursday, 28^th June 2012)