Policy responses and statements

Name of organisation:

UK Parliament: Joint Committee on Human Rights

Name of policy document:

The Human Rights of Older Persons in Healthcare - Call for Evidence

Deadline for response:

16 February 2007

Background: The Joint Committee on Human Rights (JCHR) has decided to inquire into human rights issues arising from the treatment of older persons in hospital and residential care.

Victimisation or neglect of older people within the healthcare system, who may be particularly vulnerable to ill-treatment, raises important issues of substantive human rights law. In particular, physical ill-treatment or neglect of older people in healthcare or in residential care homes, of the type that has been documented in the British Institute for Human Rights report Something for Everyone, raise issues about the right to respect for private life and the right to physical integrity (Article 8 ECHR) and, in severe cases, the right to freedom from inhuman and degrading treatment Article 3 ECHR) or the right to life (Article 2 ECHR). The use of age as a criterion in decisions about rationing of treatment or drugs also requires objective and reasonable justification in order to be compatible with Article 14 ECHR.

The Age Concern Rights for Real report, published in May 2006, examined means of using human rights law and principles in practical ways to ensure older people are treated with respect and dignity. This report cited estimates that about 500,000 older people were subject to abuse at any one time in the UK. Though not all these people will be suffering abuse in healthcare settings, the report also gave the following list of examples of breaches of older people’s Convention rights in care settings since the Human Rights Act 1998 came into force:

• Having hospital meals taken away before older patients can eat them (Articles 2 and 8)
• Mixed-sex bays and wards (Article 8)
• Patients repeatedly being moved from one ward to another for non-clinical reasons (Articles 2 and 8)
• Deaths of residents within weeks of being moved from care homes (Article 2)
• Use of covert medication (Article 8)
• Carelessness about privacy in hospitals and care homes (Article 8)
• Refusal by a local authority to place couples in the same nursing home (Article 8)
• People being forced to go into residential care because of a local authority’s unwillingness to allocate resources for services in the person’s home (Articles 8 and 14)
• Care home residents not being given weekly personal expenses allowance by the care home manager (Article 1, Protocol 1)
• “Do not resuscitate” notices used without agreement of the individual concerned (Article 2)
• poor care of black and minority ethnic older patients (Articles 8, 9 and 14)
• homophobic prejudice against same sex older couples in residential accommodation (Articles 8).

The Rights for Real report also criticises the National Institute for Health and Clinical Excellence (NICE) for failing to take into account the human rights of older people in its draft “social value judgment” guidelines.

The Committee is separately inquiring into the meaning of “public authority” for the purposes of the application of the Human Rights Act. That particular issue, which relates among other things to the applicability of the Human Rights Act in cases where local authorities have contracted out the provision of residential care to private care homes, will not be considered in this inquiry.

The Committee would welcome evidence on the human rights issues arising from the treatment of older persons in hospital or residential care. The Committee will consider how human rights principles could be applied, by healthcare providers and inspection bodies alike, to ensure that older people are treated with greater dignity and respect when being cared for. This inquiry will focus on the treatment of older persons receiving care, and will not consider the separate issues which arise in palliative care, including withdrawal of treatment, end of life decisions and euthanasia. In particular, the Committee would welcome views on the following questions:

• What are the main challenges to the human rights of older persons receiving treatment in hospital and residential care homes? Do the same problems arise in both settings?
• Are there discriminatory restrictions of the rights of older persons to access healthcare without adequate justification, for example in relation to criteria used for sharing or rationing of finite healthcare resources?
• What barriers face older persons, and their families, seeking to voice their concerns about possible abuse, neglect or discrimination in healthcare?
• Could older persons receiving treatment in hospital, or in residential care, be better informed about human rights principles? If so, how could better information and involvement be achieved?
• What examples are there of healthcare professinals or other workers, or advocates for older persons, using human rights principles to secure the dignity of older persons undergoing treatment for physical or mental illness?
• What are the main practical, management and resource considerations facing those working in healthcare settings, including residential homes, when seeking to protect the human rights of older persons in their care?
• Do NICE and the Healthcare Commission take sufficient account of the human rights of older persons in their work?

The Committee would welcome detailed views on practical means of securing the human rights of older persons and positive examples of good practice in the treatment of the human rights of older persons in hospitals and in residential care, including by reference to the approach of other countries.

The Committee will take into account evidence submitted to the House of Commons Health Committee in its 2004 inquiry into Elder Abuse, and there is no need to re-submit evidence submitted to that inquiry.

The Committee invited written evidence from interested individuals or organisations on any or all of these matters.

COMMENTS ON
UK PARLIAMENT - JOINT COMMITTEE ON HUMAN RIGHTS THE HUMAN RIGHTS OF OLDER PERSONS IN HEALTHCARE - CALL FOR EVIDENCE

The Royal College of Physicians of Edinburgh is pleased to respond to the Joint Committee on Human Rights on its call for evidence on The Human Rights of Older Persons in Healthcare.  The College has consulted with a number of Fellows delivering care to older persons and offers the following observations and comments.

1. What are the main challenges to the human rights of older persons receiving treatment in hospital and residential care homes? Do problems arise in both settings?

Many problems arising in the health care of older people in the acute sector arise mainly from established ‘structural ageism’ in the NHS.  Although the care of older people is now undoubtedly the main task of both acute and elective hospital care, it has been recognised and addressed in ways that can best be described as disappointing.  Older people, particularly those with prior frailty, co-morbidity or cognitive impairment, experience throughout the NHS seriously sub-optimal care because of the reluctance of the NHS to come to grips with demographic reality.  Such patients are most at risk of inter current infections, confusional states, imposed dependency, delayed discharge, and – in the saddest cases – loss of home as a result of hospitalisation.

Throughout the acute journey of care – from the A & E department, through assessment units, into specialised acute wards, and in generally inadequate post-acute rehabilitation facilities – older people are denied care appropriate to their needs and rehabilitation essential to their recovery.  Costs of care rise, outcomes are disappointing, and the human consequences sometimes disastrous.

All this is particularly regrettable since ‘looking after old people well is a lot cheaper than looking after them badly’.  Examples of opportunities to improve the acute care of older persons include:

• viable alternatives to admission for the frailest with sub-acute or minor acute illness;
• proper assessment of functional and cognitive status as well as of acute illness and injury in A & E departments, with access to robust and supportive multidisciplinary care and rehabilitation at home;
• acute wards staffed and equipped to deal with the problems of the frailer elderly promptly and effectively, with an emphasis on rehabilitation and supported discharge;
• adequate post acute rehabilitation available for all not able to be discharged timeously from acute care.

Such ‘structural ageism’ which biases against the multiple pathology of older persons must be addressed if the human rights of older people in hospital care are to be greatly enhanced.  “Structural ageism” manifests itself in a number of ways including the perceptions that:

• Older persons do not respond to treatment as well as younger people do.
• It is acceptable to deny dignity and privacy to older persons in a mixed ward.
• Ill health is part of ageing and that frailty secondary to chronic disease is not treatable.
• It is acceptable to be toileted in a mixed ward next to a person of the opposite sex separated by an insubstantial curtain.
• It is acceptable to move an older person to another ward without advanced warning because of bed pressures and without necessary benefit to that older person.

In both hospital and residential settings:

• Older persons, who have difficulty feeding themselves, may not receive adequate nutrition as there are not sufficient staff numbers identified to feed them.
• Older persons may be left soiled in their beds or chairs.
• Older persons may be publicly reprimanded for soiling themselves.
• Older persons’ visual and hearing problems may not be identified, treated or managed.
• An assumption may therefore be made that they are either stupid or lacking in capacity.
• Care homes are failing to meet national minimum standards for how they give people their medication, prescribed by their doctors to treat their medical conditions.
• Older persons can be given the wrong medication, someone else’s medication, medication in the wrong doses or no medication at all.

In addition, older persons in care homes have their human rights infringed for the following reasons:

• They may be placed in care homes without adequate opportunities for assessment and rehabilitation to maximise their function.
• Older people in care homes may not have a comprehensive assessment by the GP, to identify their needs, on arrival in the home.  Their conditions may be left untreated until crises arise, as it is perceived that they are in a place of safety.
• There can be a delay in the medical information about new residents being sent to the homes’ GPs.  This causes problems with continuity of care and a failure to understand the unique health needs of each resident.
• Older persons in care homes may be prescribed physical and chemical restraints contravening Articles 2, 3, 5 and 8.
• General Practitioners (GPs) and District Nurses may regard their responsibilities in care homes as additional to their normal workload and an area for which they have not received any specialist training.  This may lead to contravention of Articles 2 and 8.
• Not all GPs will have received postgraduate training in the care of frail older people with multiple pathology which may resulting in older frail people in care homes receive sub-standard treatment.  This may contravene Article 8.
• Many care homes, perhaps almost half, are failing to meet national minimum standards for how they give people their medication, prescribed by their doctors, to treat their medical conditions.  Older persons can be given the wrong medication, someone else’s medication, medication in the wrong doses or no medication at all. This may contravene Articles 2 and 8.
• Many older persons in care homes who would benefit from multi-disciplinary rehabilitation for their chronic diseases cannot access it.  This may contravene Articles 2 and 8.

2. Are there discriminatory restrictions of the rights of older persons to access healthcare without adequate justification, for example in relation to criteria used for sharing or rationing of finite healthcare resources?

The very fact that treatments may be apportioned or rationed on a basis relating to age alone is implicitly and by definition ageist.  If treatment rationing occurs it should be based on capacity to benefit alone. That benefit should be measured in terms of improvement in function, symptoms, health and quality of life and not by measures of duration of survival alone, which implicitly disadvantage older populations.  Survival is clearly an important factor in determining treatment worth but it is presently too frequently used as the prime outcome indicator in comparative studies of treatment benefit.

Rationing is never explicitly discussed in the NHS and it is therefore difficult to judge if the criteria used are “fair” or otherwise.  The NHS should seek to monitor and publish age related intervention rates in different localities in an effort to elucidate whether rationing may be actually occurring.  This information, if made public, would promote investigation of reasons for such variation and enable patients and carers to ascertain if they are in an area where potentially age-related practices may exist.  The NSF for Cardiac Disease in England and Wales adopted such an approach.  The NSF for Older People made explicit the problem of ageism but little tangible appears to have followed as yet from their proposals.

Access to advocacy services is variable and points of entry opaque.  The effectiveness of these services as currently configured is open to question.  Older people or their carers may not appreciate that there is anything to “complain” about, particularly in the area of restricted access to particular types of care eg cancer treatment.

Examples of discrimination include:

• Older persons, admitted with trauma and fractures, which require surgery, may have their operation delayed, as younger patients with or without trauma will take precedence.
• Older persons, who suffer delays for operations for fractured neck of femur, have been found to have a worse outcome in terms of morbidity and mortality.
• In some units, older persons may be refused surgery as their outcomes may be perceived as poor and this may affect the surgeons’ outcome figures.  This approach will deny older persons access to successful interventions.
• In some units, they may have greater difficulty accessing investigations because of their age.  Examples include access to 24-hour tapes for identification of cardiac arrhythmias, CT scanning and MRI scanning.
• Older people often have their medical complaints put down to old age.
• Older persons with delirium are not identified and thus are not perceived as suffering from a treatable medical condition.
• Older persons are no longer wage earners and thus less important to treat.
• Many older persons in the UK cannot get help with podiatry (foot care) from the NHS, leaving them in pain, housebound and at increased risk of falls and in extreme cases even unable to mobilise.

3. What barriers face older persons, and their families, seeking to voice their concerns about possible abuse, neglect, or discrimination in healthcare?

This is an interesting question.  Perhaps what is really astonishing is the relative acquiescence of our current older population in the face of its clear attrition at a time when they need it more and more.  Even more interesting is the likelihood of a far less tolerant attitude on the part of tomorrows older people - the baby boomer generation currently reaching 60 - whose attitudes were formed in the 1960s rather than in the second World War, and whose tolerance of poor care, neglect, discrimination etc in future years might be very considerably less.

Now that the care of older people is the main business of the NHS, clear statements about the rights of older people receiving care are long over due.  Older persons may need more encouragement eg information leaflets, posters, older people’s champions in all health care units.  Some patients will simply accept a specialist’s view that a given treatment “won’t help” without question, and many will even accept that they are “too old”.

Examples of how barriers influence access to or quality of care include:

• Staff are too busy to set aside a specific time to listen to concerns.
• Older persons tend to face assumptions that they are too confused to be able to be an accurate observer.
• Disabled older people are seen to less worthy of equitable healthcare than younger people with a single pathology.
• An older person may feel less confident about speaking out as they fear there may be reprisals.  Similarly, their families will be concerned that if they voice their concerns, their relatives’ care may suffer.
• Elder abuse does not have the same high profile as child abuse and, as a consequence, may be missed or mishandled.

4. Could older persons receiving treatment in hospital or residential care be better informed about human rights principles? If so how could better information and involvement be achieved?

Older persons receiving treatment in hospital or in residential care could be better informed about human rights principles by:

• Informing older people, or their surrogates, on entering hospital and care homes about their rights and responsibilities.
• Educating nurses, doctors and care staff about the importance of providing appropriate care irrespective of the person’s age.
• Developing a public information campaign and/or a bill of rights for older frail people entering hospital or a care home.
• Publishing age related treatment rates for a basket of interventions commonly needed by older patients.
• Creating a confidential system by which patients or carers in care homes can discuss current care without feeling that they are alleging mistreatment.
• Developing and publishing clear standards of care for both nursing and medical care for all care settings.  Patients can then know if the care they have received is below what the organisation itself says it should achieve.  As noted above, the coming generation of older persons may be less acquiescent.  Scotland awaits the result of a consultation on standards of Healthcare Services used by Older People.  This should result in evidence related to human rights following quality assurance visits to assess compliance.  In England, the National Service Framework for Older People, published in 2001 has “Dignity in Care” as one of the strands of work, and this  encapsulates most of the Human rights alluded to in this call for evidence.

5. What examples are there of healthcare professionals or other workers, or advocates for older persons, using human rights principles to secure the dignity of older persons undergoing treatment for physical or mental illness?

The British Geriatrics Society in partnership with Age Concern England, the Department of Geriatric Medicine, Cardiff University, Carers UK, the Continence Foundation, Help the Aged, Incontact, and the Royal College of Nursing have developed a Dignity toolkit, Behind Closed Doors, based on the principles of Human Rights.

Age Concern (in partnership with the Chair of the BGS Policy Committee) are running the “Hungry to be Heard campaign” on Malnutrition in older people.

6. What are the main practical, management and resource considerations facing those working in healthcare settings, including residential homes, when seeking to protect the human rights of older persons in their care?

The priority given to meeting NHS targets results in under-resourcing and poor focus on services for older persons and the inevitable infringement of dignity and human rights. The main considerations facing those working in health care settings are those of time, money and human resources.  For example, mixed sex wards have been defended on the on the grounds of safety and health care delivery

Importantly, there is no recognised minimum safety level for staffing on care of the elderly wards, meaning that frail vulnerable older patients on these wards are often subjected to substandard care due to inadequate staffing levels.

It is difficult to protect the human rights of older persons in hospitals when priority is given to:

• The needs of younger people with a single pathology.
• The need to make beds available for emergencies and thus to transfer a patient from one setting to another in the middle of the night.
• Freeing up an A& E trolley to prevent longer than 4-hour trolley waits.

7. Do NICE and the Healthcare Commission take sufficient account of the human rights of older persons in their work?

The use of the QALY by NICE can result in the denial of beneficial treatment for older frail people.  This has an inbuilt discriminatory impact when making decisions about evidence based cost effective care for older persons.  Benefit should be measured in terms of improvement in function, symptoms, health and quality of life and not by measures of duration of survival alone, which implicitly disadvantage older populations. If treatment rationing occurs, it should be weighted towards capacity to benefit.  Survival is clearly an important factor in determining treatment worth, but it is presently too frequently used as the prime outcome indicator in comparative studies of treatment benefit.  Neither organisation seems to have embraced demographic realities.

Copies of this response are available from:

Lesley Lockhart,
Royal College of Physicians of Edinburgh,
9 Queen Street,
Edinburgh,
EH2 1JQ.

Tel: 0131 225 7324 ext 608
Fax: 0131 220 3939

[16 February 2007]