The right to food and water. Written evidence to the Joint Committee On Human Rights.

Joint Committee On Human Rights Written Evidence

Memorandum from the Medical Ethics Alliance

The Medical Ethics Alliance, founded in 1999, is a coalition of World Faith organisations, doctors and nurses, who share a common ethos, as stated in the Hippocratic Oath and Declaration of Geneva of 1948. Our purpose is to promote informed debate on ethical issues.

 We note that the Committee wishes to focus on how to treat older people with greater dignity and respect, rather than on issues relating to palliative care, end-of-life decisions, withdrawal of treatment and euthanasia. By limiting their remit in this way the committee are in danger of overlooking a crucially important issue, namely the basic human right to receive life sustaining food and water. Therefore we feel that some comments on the subject are in order.

1.  THE RIGHT TO FOOD AND WATER

1. The provision of food and water is a basic human need. No human being can survive without food or water. Avoidable starvation and dehydration in a medical context must not be overlooked or excluded from deliberations as an “end-of-life issue”. Allegations of death by dehydration and/or starvation in NHS hospitals are a source of considerable public disquiet, yet worried relatives have difficulty getting their concerns investigated to their satisfaction.
2. Unfortunately as a consequence of the Law Lords ruling in the case of Airedale NHS Trust v Bland in 1993, food and water given by means of a tube is now regarded as medical treatment that can be stopped in patients with a permanent vegetative state (PVS), but it is considered good practice to get permission from a Court before taking the final decision. In the wake of the Bland judgment and encouraged by guidance issued by the British Medical Association in 1999 and the General Medical Council in 2002, doctors now feel able to withhold or withdraw artificial hydration and nutrition (ANH) from patients who are in a “near PVS” state without reference to a court. The patients most at risk are confused stroke patients with impairment of swallowing and elderly patients with senile dementia.
3. In 1993 the House of Lords Select Committee on Medical Ethics came to the conclusion that it should be unnecessary to consider the withdrawal of hydration or nutrition except in circumstances where its administration is in itself a burden to the patient. (See paragraphs 251-257 of their report of 1993.) Unfortunately this wise advice was not heeded.
4. Article 25 (f) of the United Nations Convention on the Rights of Persons with Disabilities states that: “… State Parties shall ‘Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.'”

    Article 25(f) was ratified by the United Nations in December 2006. We hope that the British Parliament will endorse this Article and recognise that food and water, howsoever given, is a basic human right.

2.  DISCRIMINATORY RESTRICTIONS OF ACCESS TO HOSPITAL CARE

  Closure of many hospitals in the last 10-15 years has decimated healthcare provision for the frail elderly. Closures came about primarily as a cost-cutting exercise and also to improve the quality of the environment for long-stay patients housed in Victorian institutions. In the process many skilled caring teams were dispersed. There are now too few hospital beds to meet the needs of the elderly and frantic efforts are being made to restrict elderly hospital admissions.

  Under the guise of “choice” and “autonomy” older people are now being asked where they would like to die and their decision is recorded for posterity. Naturally many people would prefer to die at home, but rigid adherence to that choice could prevent them from receiving life-saving hospital care when illness strikes. This may be the hidden agenda of those who see old people as “bed-blockers” but advance decisions made with inadequate information about potentially adverse consequences, should not be considered binding. Patients should be given the opportunity to change their minds.

  When illness indicates the need for admission, the decision should be made by a qualified doctor, in consultation whenever possible, with the patient. Skilled medical support should always be available if hospital admission is not possible, or is declined.

   The duty of the State is to ensure that the NHS has adequate facilities to cope with the needs of an ageing population.

3.  CARE IN THE COMMUNITY

  If elderly patients are to be denied access to hospital beds, or refuse admission, steps must be taken to improve care in the community. The following suggestions indicate some ways to improve the standard of medical care in the community:

1. Encourage the appointment of Community Geriatricians (Craig 1995).
2. Ensure that hospital-based geriatricians and physicians with an interest in geriatrics have sessions allocated to work in the community.
3. Hospital-based consultants should have a team of junior staff to supervise their in-patients when they are working in the community.
4. Encourage general practitioners to use the domiciliary consultation service. In this way complex medical and social problems can be assessed in the patient’s home by a consultant geriatrician or psychogeriatrician.
5. Ensure that all patients in residential and nursing homes have a general practitioner who has some training and interest in geriatric medicine.
6. Encourage hospital-based teams to support patients in the community. Examples of good practice include: (a) Colchester General Hospital, where a team from the chest department goes out to assess and support their patients with severe respiratory problems in the community, and (b) Cambridge where community dieticians keep a watching brief on the food given to patients in nursing homes.
7. Since older people can get dehydrated rather rapidly when they are ill, GPs and district nurses should be trained in the use of subcutaneous hydration.
8. Patients with swallowing difficulties after strokes should have prompt and skilled assessment as to the need for tube feeding. Ethical flying squads should be available in cases where this decision proves difficult.
9. By ensuring that all older people have access to good medical care, and food and water to meet their bodily needs, a civilised society shows them the respect that is their due, and enables them to live out their lives in dignity.

4.  CHALLENGES TO HUMAN RIGHTS IN HOSPITAL

(a)   Some general comments

  Hospital patients have right to life, and a right to high quality treatment with respect, dignity and privacy. When things go wrong they, and their relatives and the healthcare staff, have a right to be heard. They all have a right to a full and fair investigation of their complaints.

  Doctors and nurses should be given the tools and facilities they need to carry out their work to a high standard. They deserve respect as dedicated professionals. They should not have to choose between working with unacceptable stress levels, or leaving the NHS before their own health is undermined. At present too many hospital staff are trying to do the impossible with inadequate resources, and morale is low.

(b)   The skills of a geriatrician

  Physicians who work with the elderly need the necessary empathy and training. The knowledge and skills required to care for old people with medical problems differ from those required to deal with their surgical problems or their psychological problems. The common denominator in old age is an ageing body, leading to falls, fractures, strokes, dementia, arthritis, lowered resistance to infection and an increased risk of malignant disease. Older patients tend to have problems in multiple body systems. Diagnosis and care of the elderly is not a straightforward matter.

  Geriatricians are trained to unravel complex and vague medical problems in old people who often have social and psychological problems too. Taking a case history in a complicated case is skilled work-too often delegated to nurses these days. Admitting a seriously ill old person takes time and patience. Old people cannot be hurried and do not thrive in the environment of a busy acute ward. True geriatricians are now a species in danger of extinction, for the specialty has been merged with general medicine. Elderly people are now more likely to be seen by a consultant physician with an interest in geriatrics, than by a consultant who devotes all his/her time to the care of the elderly.

  The human rights of the elderly are best served by healthcare staff who are trained to care for the elderly and do the work from choice.

(c)   The effect of hospital closures

  Closure of many geriatric hospitals with their slow stream rehabilitation wards has led to the break up of dedicated teams trained in the care of the elderly. Geriatric hospitals took direct admissions as well as transfers from busy acute wards in District General Hospitals (DGHs) and acted as a pressure release route for acute admission wards. Closure of geriatric hospitals has increased the workload of DGHs and created a backlog of patients who may be resented as “bed-blockers” by general physicians whose true interest lies elsewhere. Patients whose presence is resented are at risk of inadequate investigation and premature discharge. Worried relatives then sense that their loved ones have been neglected and raise the alarm. It is not surprising, given the current pressure on beds, that clinical negligence cases are on the increase. NHS reforms and cut backs have had a deleterious effect on patient care. As a result the bodily integrity and lives of older people are at risk, so contravening Articles 8 and 3 ECHR.

(d)   Moves between wards

  Most acute hospitals now take acute admissions into an admission ward that is well staffed and supervised night and day. Here every effort is made to make a speedy and accurate diagnosis and give emergency treatment. The patient will then be moved to a more appropriate ward. However as a result of a shortage of hospital beds, acutely ill old people may be scattered around various wards in the hospital, rather than grouped in wards designated for the care of the elderly. Confused old people recovering from falls for example may have to go to a surgical ward until a more appropriate place can be found for them.

Example

  A consultant geriatrician was asked to undertake a domiciliary visit in a large Midland town. The patient was found to be in severe congestive cardiac failure and in urgent need of admission. There was no bed available at Hospital B where the consultant worked so she phoned round and found a place for him on a surgical ward in Hospital A. The surgical registrar accepted the patient on the understanding that he would be moved at the first possible opportunity. The patient was moved to a geriatric ward in Hospital B after a few days and recovered well.

(e)   The old order changes…

  In the old days consultant geriatricians had wards of their own, staffed by nurses who understood the consultants’ work pattern and were trained in the care of the elderly. Every consultant had their own team of junior staff and often a registrar and senior registrar too. People knew who was in charge and carried ultimate responsibility for clinical decisions. There was a sense of order on the wards in those days and more dignity and respect for patients and staff.

   New European Union directives on hours of work have caused a reorganisation of junior doctors’ hours, and there is no continuity of junior staff to cover out of hours. This means that the junior doctor called to see a patient in a crisis may have no prior knowledge of the case. The ward nurses may be agency nurses who do not know the patients. As a consequence of all this the care of the elderly is now less humane.

5.  BARRIERS THAT FACE OLDER PERSONS AND FAMILIES WHEN SEEKING TO VOICE CONCERNS

  Patients are often reluctant to complain because they do not want to offend the healthcare staff. The sick elderly are defenceless, trusting and vulnerable. Some who are compos mentis but too ill to go home may try to dissuade their relatives from complaining by saying “I have to stay here—don’t rock the boat” or words to that effect. Relatives and friends of the elderly need access to a well-organised advocacy system that is entirely independent of the NHS and healthcare professions. Various charities and concerned groups are doing what they can with limited resources, but it is not enough.

  People who complain about medical care may be subjected to intimidation. Nurses and doctors who complain compromise their career prospects. Some prefer to resign and move to the private sector. Others retire early, leave the profession or emigrate. Consultants who complain about care in a nursing home find themselves in conflict with the NHS Trust that registered the nursing home; the same Trust may also be their employer. Some examples of intimidation are given below.

Example 1

  In the early 1990s a nursing home manager was worried about the medical cover provided by a GP. She phoned the Family Practitioner Committee and was allegedly told: “Don’t put that in writing or you will find that your nursing home is closed.” In due course there was an inquest on a patient from the nursing home. A consultant geriatrician who supported the nursing home manager was threatened with hostile questioning from the Health Authority solicitor and sought legal advice. The coroner was reminded that he had little scope for intervention under the terms of the Coroner’s Act of 1988. The nursing home did eventually close and the manager was obliged to move to another county.

Example 2

  An elderly woman suffered a stroke and was admitted to hospital. Her sister became worried that the patient was starving to death, and sought advice far and wide. The old lady eventually died and the coroner was informed. A retired consultant who had heard about the case spoke to the coroner’s officer and was told that relatives who complained risked being sued by the NHS Trust. When the relatives heard this they panicked and failed to turn up at the inquest when called as witnesses. The retired consultant was called as a witness and voiced the relatives’ concerns. Following a verdict of death from natural causes, the NHS Trust reported the retired doctor to the General Medical Council. An experience such as this discourages people from making valid complaints!

6.  THE NHS COMPLAINTS SYSTEM

  This can prove to be a futile waste of time. Members of the public face a daunting array of administrators and consultants who defend their case management against all odds. Doctors have the backing of defence unions whose solicitors have years of experience in the medico-legal field—the public are generally less fortunate. Only those who qualify for legal aid or have deep pockets can afford to have legal advice. NHS Trusts have a tendency to admit to complaints about loss of dignity, while defending more serious allegations such as death from starvation of dehydration.

7.  REFERRAL TO THE GENERAL MEDICAL COUNCIL

  (a)  Many referrals to the Fitness to Practise Directorate of the General Medical Council (GMC) fail because the documentation is insufficient. If a complaint is made to the GMC, the person making the complaint has the responsibility of providing evidence to support their allegations. This can be difficult, given the frequency with which NHS notes go missing. Notes can go missing for months or years. They have been known to reappear with crucial pages missing or rewritten. It should be the responsibility of the GMC to obtain the evidence once genuine concerns about a doctor’s conduct have been brought to their notice.

  (b)  A plethora of regulatory bodies makes it difficult for doctors and patients to know who to inform if there is concern about a doctor’s fitness to practice.

  (c)  Recent GMC guidance on Good Medical Practice (revision of 2006) states:

“You must give an honest explanation of your concerns to an appropriate body, and follow their procedures.” (at para 43); and
“If there are no local systems, or local systems do not resolve the problem, and you are still concerned about the safety of patients, you should inform the relevant regulatory body. If you are not sure what to do, discuss your concerns with an impartial colleague or contact your defence body, a professional organisation, or the GMC for advice.” (at para 44).

  If doctors have difficulty knowing what to do, how are members of the public expected to steer their way through the maze? Members of the public who complain may find themselves utterly lost. They grapple with piles of letters and photocopies as the buck is passed from one organisation to another. They wait endlessly for answers. They get emotionally exhausted and desperate. Those who manage to get legal aid may find that it is suddenly stopped just as they seem to be making progress. Finally the game no longer seems worth the candle and they drop out after years of striving, worn out and depressed. Medical negligence cases can ruin lives.

  (d)  In 2003 Sir Graeme Cato then President of the GMC called for a single gateway to the health care complaints procedure in the UK pathway. He said

“… To do our job effectively we should not expect patients to gain an insider’s knowledge of the maze of NHS and other systems in order to complain… ” (Source GMC News December 2003).

  (e)  The NHS Reform Bill announced in 2001 contained a proposal to create a new Council for the Regulation of Healthcare Professionals with wide ranging powers. If such a body is created we recommend that it should be entirely independent of the government, the medical profession and other powerful vested interests.

  (f)  The charity Action for Victims of Medical Accidents (AVMA) speaking to the House of Commons Health Committee in 1999 said:

“… Health providers are not only reluctant to acknowledge failures in care, but perhaps do not even recognise them as such. There is a complacency that makes failures acceptable. They are often accepted as the inevitable consequence of an overstretched and under-resourced health service. However, there is a real issue concerning standards of care.” (Committee Report HC 549-11 HMSO. November 1999.)

8.  THE CORONIAL SYSTEM

  We are aware that the coronial system is under review at present. Some coroners are proving exceedingly reluctant to hold inquests into the deaths of older people where clinical negligence is thought to be factor. One coroner, faced with investigation of an unexplained death said: “I am not interested in old people who die in hospital.” Attitudes such as that leave the elderly wide open to mistreatment and neglect. Coroners faced with opposing opinions from independent medical experts, may give an equivocal verdict, as happened in the case of Mrs O, an elderly stroke patient who had her liquid food supplements stopped (Anon, Daily Mail 1997, Gould 1999). Others compare differing expert opinions in private and decline to hold an inquest. Thus many deserving and worrying cases fail to reach the courts. This does little to allay public concerns or protect patients.

  In the present climate expert medical witnesses are proving extremely reluctant to offer their services because those who criticise their colleagues may be ostracised, or reported to the General Medical Council. As a consequence lawyers have limited access to a truly independent medical opinion.

Some key points

— The right to a fair trial and full investigation must be upheld.
— The right to privacy should not be given undue weight.
— Justice must be fair and open, not carried out behind closed doors.
— Healthcare staff who report their concerns to a coroner, should not be victimised or reported to their regulating body without due cause.
— Coroners must not collude with NHS Trusts.
— Witnesses should not be intimidated.
— Relatives should not be given power to veto requests for a postmortem examination, when this is essential to establish the cause of death. Failure to carry out a postmortem can impede the course of justice.
— The Bolam test of 1957 should be reviewed since bodies of medical opinion can be wrong or unduly influenced by political or economic factors.

  Note:   The Rt Honorable Justice Michael Kirby said that in the view of Australians, Bolam reflects the “hierarchical nature of English Society, and… the unwillingness of one profession (the law, represented by the judge) to countenance ordinary people challenging the rules laid down by another profession (medicine).” It also “allowed the medical profession to set its own standards of care” which Australians found unacceptable. Kirby also noted that in 1983 in South Australia, the Supreme Court “refused to surrender to the medical profession the setting of standards which if reached, would determine the entitlement of the patient who had suffered harm”. (Kirby 1995)

9.  MIXED SEX WARDS

(a)   Some advantages

  Those with single sex bays catering for 4 to 6 patients permit some flexibility, for they can be used for men or women depending on service needs. A side ward can be used for a patient of either sex. Most elderly people thrive on companionship and enjoy chatting to people of the opposite sex.

(b)   Some disadvantages

  The main perceived disadvantage is the fear that patients may wander around unclad or be exposed to public gaze during nursing procedures. But that could apply to unisex wards too. There should not be a problem if all concerned behave with due decorum. Under normal circumstances it is surely better to have a bed in a mixed sex ward with good medical and nursing care, than to spend the night on a trolley in a hospital corridor, or languish at home untreated. Mixed sex wards can work well, but can be disastrous when things go wrong and facilities prove inadequate.

Example

  “A person had a hip operation in a hospital where the care was excellent- her own small room with ensuite hygiene was faultless. She returned home but after two weeks she had complications following her operation- then she had chest pain and shortness of breath so she was sent to an A & E department at a hospital designated one of “excellence”. She was admitted to a ward, mainly elderly, where some patients had dementia as well as physical problems. Twelve people, men and women shared one toilet that was unhygienic and often messy. An outbreak of diarrhoea broke out and the wards were evacuated. The ward was cramped, smelly and unhygienic—the hospital was a teaching one—a so-called flagship hospital.” (Source- a member of the public)

10.  RESIDENTIAL AND NURSING HOMES

  (a)  Older people in the community should have high quality care in pleasant surroundings. Suggestions about ways to improve their medical care have been outlined in section 3 above. The staff of residential and nursing homes should be well trained and well supported by general practitioners, hospital consultants and NHS therapists as necessary. Palliative carers, geriatricians and psychgeriatricians should co-operate and pool their expertise for the benefit of older patients.

  (b)   Keep hope alive. Older people go into residential and nursing homes to live until they die. Many remain there for several years and need supportive care that meets their physical, social and psychological needs. Their care must not become unduly death-orientated. Overenthusiastic application of palliative care principles through the Liverpool Care Pathway and the NHS End-of-Life Programme could prove disastrous. Older people often appear to be at death’s door, but if seen by a competent geriatrician, may prove to have some eminently treatable disorder. All older people should be entitled to receive hospital treatment if necessary when they are acutely ill.

  (c)   The spiritual needs of the housebound should be addressed and given expression with the help of clergy, lay people and parish nurses. Good practice in this area should be encouraged. Organisations such as PARCHE in Eastbourne (www.parche.org.uk), or the Christian Council on Ageing or the Church Army can offer advice, as can local clergy and ministers of various world faiths.

  (d)   A Philosophy of Care. Fifteen nursing interventions formed the basis of a philosophy of care for the elderly that was recommended by Chris Gillespie, a clinical psychologist based in Northampton in 1984. He favoured a therapeutic approach used in Australia (Hardy, Capuano and Worsam 1982) and felt that this would be of considerable benefit to the elderly in long stay care situations in the UK.

Meeting the social and psychological needs of the elderly in long-term care

Fifteen helpful interventions (according to Gillespie 1984):

1. Nursing assessment to provide data for identifying possible physical causes that may influence behaviour.
2. Work with interdisciplinary team in referring patient to appropriate therapies and services.
3. Establish and maintain communication.
4. Provide the opportunities for interaction with others.
5. Identify learning needs/desires and pace a teaching programme.
6. Provide an environment that ensures safety, security and freedom. Minimise architectural barriers.
7. Avoid misuse of restraints and medications.
8. Involve family and meaningful others in care.
9. Create a climate that maintains hope and meaningfulness in life.
10. Provide opportunities for expression of ideas, concerns.
11. Promote activities that will enhance self-esteem and sense of self-worth.
12. Allow fulfilment of sexual expression.
13. Encourage continuity of appropriate aspects of previous life styles.
14. Support the individual and meaningful others in the process of loss and grief.
15. Work with patient and meaningful others in facing death by allowing expression of feeling concerns, and fear, and referral to appropriate sources of help.

  (e)   Music and art therapy. In the South Western Hospital, London in the mid 1980s, patients on the geriatric long stay wards had regular sessions of art therapy and music therapy, provided freely by teachers from Lambeth Council. These “classes” were greatly enjoyed by the patients, but unfortunately they stopped when charges were introduced. The idea could be replicated in residential care settings.

  (f)   Personal care is enhanced when nurses and carers know more about the patient. When an elderly person is admitted into care it is helpful to gather as much information as possible from the person, their friends and relatives. Understanding how the individual used to function when in the prime of life, and how their circumstances have changed, enables staff to see the person inside the frail body.

IN CONCLUSION

  Many hospitals, nursing homes and residential homes provide high quality care according to best practice, but in others there is considerable room for improvement. Regrettably ageism is endemic in some hospitals (Craig 2006). When older people are treated as units in rows of beds, or bed-blockers to be evicted, the stage is set for human rights violations. The challenge is how can we reverse this downward trend? Human rights legislation will not improve matters unless Parliament and the judiciary are of a mind to enforce such legislation. We will need more NHS rehabilitation beds and community facilities, and well-trained healthcare staff, if older people are to be treated with dignity and respect.

REFERENCES  Anon. Why doctor ordered patient to be starved. Daily Mail 14 May 1997.

  Bolam v Friern Hospital Management Committee (1957) 1 WLR 586.

  Craig, GM. Problems in the delivery of medical care to the frail elderly in the community.

  Journal of Management in Medicine. 1995; 9: 30-33.

  Craig GM The problem of ageism. Chapter 14 in Patients in Danger: The Dark Side of Medical Ethics. Enterprise House, 2006. ISBN 978-0-9552840-0-7.

  Gillespie, C. (memo) 1984. Implications for nursing practice-care of the elderly.

  Gould M. No regrets. Nursing Times 1999; 95: 10-11.

  Hardy VM, Capuano EF, and Worsam BD. The effect of care programmes on the dependency status of elderly residents in an extended care setting. Journal of Advanced Nursing 1982; 7: 295-300.

  Kirby M. Patients rights—why the Australian courts have rejected Bolam. Journal of Medical Ethics 1995; 21: 5-8.

January 2007