This book by Mgr Charles G. Vella, who has had long experience as a hospital chaplain, stresses the humanising and healing effects of the simple communicative acts of listening, caressing, smiling, stopping by and giving time to sick patients and not treating them as a number. Useful for anyone working in the health service.
200 pp. Veritas Publications. To purchase this book online, go to www.veritas.ie
CONTENTS
FOREWORD
INTRODUCTION
CHAPTER 1
When the patient is a number
Person-centred healthcare
The long waiting times for admission into hospital
The reality of the health service
CHAPTER 2
Humanising a hospital
Mistakes in medicine
The scandal of the Good Samaritan
A failed project
Monsignor Giussani and the San Raffaele
The ethical conscience
The ethics of the virtues
All it takes is a caress
Humanisation and research
God is Love
CHAPTER 3
Some basic principles of ethics
A meeting with Mother Teresa in Calcutta
Jerome Lejeune’s testimony
Who is Man?
Correct clinical practice
Universal ethical principles
CHAPTER 4
The patient and “I”: a relationship based on help
Knowledge of oneself
Awareness of one’s feelings
The sickbed as a place of learning
Job and suffering
Doctors of the future
CHAPTER 5
Perspectives which foster good doctor-patient relat onships
‘Knowing’ to ‘know how to act’
The patient’s fears
Expressing one’s feelings
How to respond to feelings expressed by patients
Rogers’ Ten Points
Attitudes to be avoided
CHAPTER 6
The Eighth Sacrament: the ability to listen
Medical science and humanistics
Listening makes doctors more humane
Empathetic listening
Listening is a sign of love
CHAPTER 7
The pastoral care of the sick
Pastoral counselling and the hospital Christ’s presence among the sick
The priest’s evangelising role in hospitals A typical day in the life of a chaplain Visits to the sick
The administering of the Holy Eucharst to patients
The gospel of suffering
The sacrament of the sick
CHAPTER 8
The Christian meaning of suffering
Benedict’s Cross
Suffering is not a punishment
Why must I suffer?
What is evil?
The conversion of Clara Boothe Luce
Chris Cappell’s musical genius
The Song of the Servant of JHWH
Praying for healing
CHAPTER 9
At the bedside of the dying
Death: the last taboo
How do people die in hospitals?
the patient feels
Accompanying the dying
Eliminating the use of the word ‘terminal’
Agonia
The rights of the dying person
Total pain
The final days and hours
CHAPTER 10
The ethics of the intensive therapy unit
Suffering in intensive care
The patient’s consent
Patient confidentiality
Living wills
The living will in Italy
Attempts at exploitation
`Euthanazi’
The world-wide code of ethics
Bringing the sick back to health
CHAPTER 11
Ethics and the care of AIDS patients
Drugs and the family
The centre for the care of AIDS patients
Compassion for AIDS sufferers
AIDS and the patient
Fear and AIDS
Attending to AIDS sufferers
AIDS and the use of condoms
Music and Luke’s death
Giving hope to the sick
APPENDICES
A Christian Advance Declaration for the managment of a serious illness
Patron Saints of various illnesses
Patron Saints of medical professionals
BIBLIOGRAPHY
A NOTE ON THE AUTHOR
CHAPTER ONE
When the patient is a number
To introduce our subject, I shall quote a letter to the editor of the Corriere della Sera, which featured as the ‘Story of the Day’ on 24 June 2005 and elicited a response from Giangiacomo Schiavi, a regular columnist with the paper. Increasingly, the printed media and TV give space to the publication of the negative experiences and the disillusionment caused by the poor quality of care given in hospitals and clinics to members of the public. The writer of this letter, therefore, is not a voice in the wilderness, but I shall quote it in its entirety because it indicates a ‘typical’ example of the malfunction of the health services. The Italian word is ‘malasanità’ a word which has entered the Italian language in daily use, even if it is sometimes misused.
The title, spread over five columns of print, screamed: HOSPITALS: WHEN THE PATIENT IS MERELY A NUMBER. This is what the letter
said:
I went to a hospital in Milan to care for my ailing father and found the attitude of doctors and nurses to be cold and distant. What really struck me was the psychological degradation of the sick. It was like going back in time to the immediate post-war period, where, like lottery numbers, patients were identified and called by the numbers assigned to their beds. Doctors and nurses would come in and call out: ‘Who’s number 12?’
A few days later my father was brutally given the cold facts about his condition with no thought to the psychological effects of such bad news. This does not foster good doctor-patient relations. Is it not a fact that medical treatments have a greater chance of success when the patient is willing to collaborate with his carers?
The letter speaks for itself, and Schiavi replied to it in a very correct and humane manner. When patients become mere numbers, something is missing from the bedside manner of carers: it is a sense of ethics, the lack of which is to blame for the so-called ‘malfunction’ of the health services. If a patient becomes a number it is because a certain deep sensitivity is missing in the attitude of care-givers, which results in a malfunctioning of interpersonal relationships.
Hospital wards are not populated by numbers, but by men and women of different ages, nationalities and creeds, who have been hospitalised because they are ill. Very often, their suffering is augmented by the humiliation of being thought of as a number on a bed, totally divested of their human dignity: they become mere objects, and are often treated as such, without consideration or courtesy.
The greatest humiliation for patients is that, being thought of as a number, they are deprived of their dignity. Nobody should be treated in such a way. All individuals have the right of respect to their human dignity, whether they are patients in a luxurious private hospital or in a public ward. Even more degrading is the inhumane treatment of psychiatric patients by certain members of staff in mental institutions, as has been amply shown in a number of appalling cases. The same holds for aged members of society who are not self-sufficient, are incontinent or unable to feed themselves, who throw tantrums and shout or cry loudly in their rage and frustration. God loves every person, but these are his favourite children: why then do not those who work among them have the least spark of love, compassion or respect for their vulnerable brethren?
As was stated in Schiavi’s reply to the published letter, it used to be common, in the past, to hear doctors, nurses and other hospital staff call out instructions of the type: An intravenous drip for number 8; a lozenge for number 17, as though calling out ‘numbers’ in a bingo hall. Added to this, ‘each of these “numbers” were subjected to being addressed in an overly familiar manner to which they had no choice but submit, whether they were asking for information about their condition or attempting to safeguard their dignity’ (1).
Merely the necessity of having to undergo a stay in hospital is traumatic enough for patients, especially those suffering serious illness. I have witnessed the fear, uncertainty and doubt of patients of all ages being admitted into hospital, both before and during my ministry at the San Raffaele. They are often psychologically at rock bottom, as may be seen by the pallor of their faces, and at times, the odd tear. Being referred to by number on their arrival in the ward adds to their suffering.
I remember once accompanying la woman to a luxury clinic where she was received in a very professional manner, but on finding herself alone in her hotel-like room, she felt that she had just been shut into a fridge. Even though she was not assigned a number and was always addressed as ‘Madam’, the atmosphere of the place was cold and unwelcoming. It is not the papered walls nor the aesthetically pleasing building and furnishings that constitute a hospital worthy of the name, it is the people who work there: the head of surgery, the nurses, the nursing aides and so on down to the domestics. These may, create a welcoming atmosphere which puts patients at their ease, calms them down and fosters their trust.
It is human warmth towards the patient which renders a tangible ethical sense in human relations. In my experience, and doubtlessly that of many patients, there are many doctors and other health workers whose attitudes show a real ethical conscience.
As a matter of fact, as a priest myself, I have observed that there is a sizeable number of ‘good samaritans’ within the ranks of the health services, who are dedicated to their profession in the same way as a priest lives his vocation. I remember an elderly military gentleman who walked through the hospital ward proudly wearing his war medals and telling anyone who would listen the stories of how he had won each of them. He was never called ‘Number 20’ but always ‘The General’ and this made him happy. To him, the hospital was home and the staff were his friends. For months towards the end of his life he battled the illness that afflicted him, and to the very end he was referred to and addressed as’The General’. He died like a true general.
Person-centred healthcare
The well-known human existentialist psychologist Carl Rogers was among the first to develop the concept of ‘person-centred therapy’, which involves the ethical imperative of giving priority to the ‘wellbeing’ and the ‘good’ of every person, sick or healthy, without discrimination. The individual is of absolute value, and must be considered objectively in his totality and unity a creature of God, made ‘in his image and likeness’. Treatment and cure must therefore be holistic, that is, caring for the person in both body and spirit.
All hospital and medical staff, including administrative staff, must always act in the best interests of the patient. Unhappily there are times when budgetary exigencies make profits and expenses more important to the ‘hospital industry’ (a most unfortunate term) than the well-being of each patient.
According to Professor Edmond Pellegrino, who for many years directed the Kennedy Institute for Ethics at Georgetown University in Washington DC, the term ‘medical good’ refers both to the effects of medical procedure on the illness that is being treated and to the benefits that may be achieved by the application of medical knowledge: prevention, on, cure, quality of and prolongation of life. The ‘medical benefits’ can vary. For example, the use of an oxygen mask may lead to a complete recovery, but it can also cause a patient to have a panic attack; for such reasons it is necessary to weigh the pros and cons of any treatment. Pellegrino notes that the usual procedure is to weigh the medical benefits against the effect on the individual patient and act accordingly.
Values such as freedom, rights, rationality, awareness, the right to take decisions regarding treatment and the ability to choose are associated with the well-being of the patient. When patients are thought of as numbers, their well-being is relegated to second place, because the ethic of human-centred medical treatment is missing.
In this day and age, the human person and human life are considered of little worth – this is evident if one notices the ease with which people are murdered, wars are declared. As stated in Pope John Paul II’s encyclical Dominum et vivificantem: ‘Despite the dizzyingly rapid technoscientific progress, despite the great achievements and the goals reached, mankind is threatened, humanity is threatened’ (2). In this same document the Pope writes about the ‘picture of death’ and the ‘culture of death’ which is being composed in our times (3).
To change this it is necessary to make a great improvement in the treatment and care of the sick, putting them first, making them protagonists – far from treating them as anonymous numbers – in hospitals worthy of human beings, thus rendering their confinement in hospital a humane experience. Such change involves a revolution in health policy and hospital management: it necessitates viewing the patient as a citizen with full rights, deserving of respect because he or she is a person who is suffering and should be treated, no matter the cost.
In some countries, as in Great Britain, where the health service has been partially privatised, hospitals sometimes refuse treatment or surgical procedure, even those as necessary as organ transplants, because their budget cannot cope with the expenses involved. One such example involved a girl who was refused treatment by a number of hospitals that lacked the funds to cover the costs, and was eventually allowed into a hospital and given treatment when an anonymous benefactor offered to make good for all the expense needed. This is a classical example of utilitarian ethics, in which the cost of treatment is considered more important than the needs of the patient.
Rogers’ philosophy on the human person is not ascetic, neutral, political or beaurocratic, but is based on human and moral values whereby the individual person is ‘the agent’ and ‘protagonist’.
The long waiting times for admission into hospital
What deeply dehumanises the patient-doctor relationship is the long time one must wait before being admitted into hospital or being operated on. This is a common reality in many EU countries; unfortunately Italy holds the record for longest waiting times. According to the Active Citizenship Network (European Active Citizenship Network – Patients’ Tribunal), in the majority of cases the waiting lists in Italy are longer than those in nine other European countries. This causes psychological distress to patients and undermines their quality of life.
This situation exists in other countries, but the waiting times are shorter, with a few exceptions. When the wait is too long, the patient is often forced to make an appointment with a hospital that has comparatively shorter waiting lists, for example, one in the north of Italy rather than in the south, or even in different countries altogether, where some procedures are carried out using more modern methods. I know many patients who have done this, among them some doctors: for hip replacements one travels to the UK; for liver transplants to Berlin or Brussels; for knee operations to Lyons; for neurosurgery to Innsbruck; and for ontological treatment to Paris. There have been a number of court rulings confirming the right of European citizens to be treated in European countries other than their own; and the European Court of Justice has ruled that patients should be reimbursed for treatment, travelling and lodging expenses in cases where waiting lists in their country of origin were judged to be too long.
It is unacceptable that, as often happens, hospitals should suggest that patients seek expensive private treatment in order to avoid a long wait. Such a proposal may be acceptable to patients covered by medical insurance, but is not practicable for the vast majority, many of whom often require urgent treatment but are forced to wait months, to the detriment of their health which may consequently deteriorate beyond a state where their condition is curable. This goes against all ethical principles and denies the citizen the right to benefit from public health services within a reasonable time frame.
Since April 2004 mutual healthcare cooperation on agreements between EU countries gives EU citizens the right to free treatment anywhere within the EU, but this only holds true in cases where highly specialised treatment is unavailable in Italy, or specific treatments are unavailable at the time they are needed, or are available but unsuited to the specific needs of particular patients. It is then also necessary to acquire the endorsement of the regional authority for such treatment.
On the other hand, it must be stated that health welfare regulations are generous with the over-65s, low-income families, the unemployed, the chronically ill and children under the age of six, while millions of Italians are exempt from prescription or other medical charges. It has been calculated that there are between 22 and 23 million Italians (40 per cent) who do not pay for visits to a specialist, analysis and diagnosis of illnesses. This number is further raised to 34 million by those entitled to free medicinals (4). Only eight regions are left where patients must pay a ‘ticket’ (CIO to €20) for medical services or medicinals.
This situation leaves much to be desired from the point of view of justice, equality and honesty. It is necessary to move on, as other countries have done, from a welfare state to a caring society; that is, a society that is not satisfied with a state that acts as parent.
The reality of the health service
The above negative aspects are often characteristic of health services administration. If you go to the local health clinic to get a form filled in by the doctor on duty entitling you to medical examination or analysis, you wait your turn for some hours, despite being sixth in the queue. Then you go to a hospital to make an appointment for the examination, and if you make sure to arrive early in the morning, you will find that you are tenth in line. The receptionist or clerk behind the little window treats you very impersonally. After some days, if you are lucky and line up at 7 a.m., you are twentieth in the queue.
The situation becomes worse when, having been entered into the computerised system as a number, the patient is made to wait for a number of months before being admitted into hospital or being operated upon. In such a situation, the sound of the phone ringing raises the hopes of the patient that this will be a call from the hospital. It takes the intervention of the heavenly saints to be admitted into hospital or be given an ultrasound scan or x-ray in a short time. Some patients die before their turn to be operated on comes around.
White Coats and Pyjamas: The Doctors’ Part in the Italian Health Services Disaster by Dr Paolo Cornaglia Ferraris provoked lively and contrasting reactions, bringing about confrontation between doctors and patients. In a second book, entitled Pyjamas and White Coats: Changes in the Italian Health Services, the author analyses in a more systematic way the changes taking place in the Italian health services since Minister Bindi’s reforms. Treating the sick is defined as ‘a dignified and noble profession’, and a number of practical proposals are put forward, which aim at humanising medical practice. In order to ensure that patients ‘no longer continue to be treated as objects, but are seen as equal stakeholders in their own recovery’ the author insists on the need to ‘take into account the patient’s background and life in the devising of the treatment programme’ and insists that one ‘should never arrogate to oneself the right to make choices which may be contrary to the wishes of the patient’. This means building a relationship of trust which allows the patient to come to an informed consent in his/her treatment, in other words to share in the choices made by the doctor.’
Fortunately there are hospitals in Italy which have gone way beyond this advice in the way patients are treated. Thanks to new technology, the professionalism of the doctors and the support of administrators, many problems of hospital management have been resolved and the patient today is no longer merely a number, but a person who enjoys a citizen’s rights to a health service based on an ethic of justice, equality and transparency.
All hospital workers are called to give of their very best to the sick person: one should never bear an attitude of charity or pity towards the sick, but has ‘an obligation to provide the most humane, scientifically correct surroundings in the same way as one would provide a golden tabernacle for Christ’ (6).
NOTES
CHAPTER TWO
Humanising a hospital
A young GP in a mountain village once said to his mentor, ‘Professor, I’ve discovered a new medicine’. The professor was perplexed by such an audacious assertion from a former student of his, and asked, ‘What is this new medicine?’ With a gentle smile the young doctor gave the startling reply: ‘Holding my patients’ hands and smiling at them while giving my prescription’. St Padre Pio had instructed the doctors at the Casa di Sollievo (Home of Relief) to ‘Give a smile with your medicines’. A smile costs nothing to him who gives it, but is worth a great deal to the patient.
This is what humanising medical practice means, treating the patient like a’brother’ or, as one says nowadays, a ‘partner’ (R. Vitch).
Many hospitals today lack the human touch and medical practice is dehumanising. The buildings are old and patients are crowded into wards, or worse still, lined up in corridors, exposed not only to draughts, but also to the curious looks of passers-by. It is wrong to leave a patient waiting for hours on a gurney in some corridor until an orderly can come and ferry him or her from one section of the hospital to another in order to have tests made. In such cases, patients are likely to contract bronchial pneumonia or some other infection. I have always felt extremely guilty about old patients treated like objects in this way when they have asked me, with tears in their eyes, to call somebody to take them to the bathroom.
Even hospitals boasting the most sophisticated technology cannot be termed institutions of ‘excellence’ if they lack respect for the human person. We should not make fabulous assumptions about technology, no matter that it enables the patient to travel to the other side of the world to undergo robot-assisted surgery – it does not magic away all problems.
