Adult protection cases in a hospice: an audit

Payne, Malcolm

abstract

An audit of the 12 adult protection cases arising in a south London hospice during 2004 is reported, including case studies illustrating issues arising and information about the introduction of a new policy and procedure following No Secrets guidance (Home Office/Department of Health, 2000). Introducing reporting to local authority social services and adult protection co-ordination raised various issues.

key words palliative care end of life care dangerous drugs hospice vulnerable adults local authorities

Introduction

This paper reports an audit of all cases referred by staff as potentially raising adult protection issues in a large hospice serving a socially and ethnically diverse area of south London during the year 2004. It also identifies issues arising from the introduction of a new adult protection policy and the first year's work. Raising awareness of adult protection in palliative care settings may be important, since Cohen (2003) argues that it may be one of the outcomes of the emotional isolation of dying patients. Fisher (2003) recently argued that this is an 'invisible' issue in palliative care because it is generally assumed that families are caring and supportive at the time of death. However, FuImer et al (1999), in an American study, argued that day care settings, common in palliative care, may be an important source of support and a place for disclosure of abuse in other settings. So raising adult protection issues may go against the present culture in palliative care, but help to protect patients.

Context

Founded by Dame Cicely Saunders in 1967, St Christopher's Hospice was the first modern hospice, and now provides a comprehensive palliative care service to an ethnically and socially diverse area in south London. Over 1800 people each year are cared for in its 48-bedded Hospice, and in people's homes through a home care service. It is a registered charity with a service level agreement for the provision of specialist palliative care with a consortium of five local primary care trusts. Services include:

* in-patient medical and nursing care led by consultant physicians and nurses

* 24-hour, seven days a week home care led by clinical nurse specialists in teams focused on each local authority and primary care trust areas

* home nursing and other care to patients in their own homes

* day care including creative therapies

* social work, including bereavement support and welfare rights services

* chaplaincy providing spiritual and religious care

* psychiatric treatment

* physiotherapy and occupational therapy

All these are incorporated into a complex texture of care. This reflects the historic commitment of palliative care to a multiprofessional holistic model of practice working with people, their social networks and their communities in total so that the service '... reaffirms a person's life and relationships' (Saunders, 2004).

Introduction of adult protection policy

Prior to 2003, the Hospice had an 'abuse policy', establishing procedures for investigation in the event of a report or complaint of abuse by a staff member with a patient in the in-patient unit (IPU). This was designed to meet the requirements of the then regulator of care homes. The separately administered children's bereavement project had a child abuse policy. There are also complaints, grievance and public interest immunity procedures for staff and procedures for a volunteer to raise 'concerns'. All patients, both in the community and in the IPU and day unit, and visitors to the Hospice are also given anonymous feedback forms, which they may use to make complaints or comments about anything. Independently administered forums, to which all users are invited, take place three times a year. Regular service audits are carried out as part of the work of staff.

As a result of these arrangements, the Hospice was reasonably confident that someone with concerns about abuse by staff would have a way of raising them. However, new multi-agency 'adult protection' guidelines issued by the local authority for the area in which the IPU is located led to the development of additional procedural safeguards against wider abuse.

A policy and associated procedures were drafted reflecting the need for protection of patients from abuse in the community. The document consists of a procedure enabling the Hospice to comply with the requirements of the local multi-agency guidelines for the Hospice's location, and an addendum classifying and illustrating the main types of abuse that might be encountered, drawn from the multi-agency guidelines. The guidelines, in turn, were largely based on the Home Office/Department of Health (2000) document No secrets. All cases raising protection issues would be referred to the local/ hospice co-ordinator, who would give advice and contact the relevant authorities in accordance with the guidelines. The draft was sent to the directors of adult social services for the five local authorities in the Hospice's catchment area, in particular to identify whether there would be any difficulties arising from variations in procedure in the different areas. Two declined to comment on the grounds of pressure of work, one did not reply and two referred the document to adult protection co-ordinators, who provided helpful comments that were incorporated into the document.

Copies of multi-agency procedures for all the local authorities were sought, and four of the five received. Information detailing contact names and numbers for co-ordinators for use by the Hospice co-ordinator and anyone who had to deputise was created, and has been re-checked six-monthly.

The policy and procedure was implemented through the Hospice's conventional process. First, a draft was issued for consultation. After amendments were made, it was approved by the senior management team and then issued to managers of clinical services for distribution to their staff at team meetings. A general introduction was provided as part of the monthly cascade briefing for staff and volunteers, and an all-users email announced the activation of the policy. The five local authorities were also sent copies of the final policy and procedure and informed that it had been activated; the co-ordinator for the local authority covering the IPU visited the Hospice to discuss the policy and its implementation.

The local authority's contractor for adult protection training was engaged to provide 'alerter' courses for all clinical staff and, separately, for managers, so that the training provided was the same as that provided for local authority staff. However, the case studies used were constructed by the Hospice to reflect common situations encountered during its work, and the procedural elements of the local authority training downplayed, in favour of a focus on practice requirements. In support of the training, a subscription to the Journal of Adult Protection and a number of books about elder abuse and adult protection were ordered for the Hospice library.

Staff concerns about adult protection

Several groups of staff asked for meetings with the Hospice co-ordinator to discuss the implementation of the policy, and a number of issues arose. The most common concern was the requirement to report any concerns to the local authority social services department. This was on three grounds:

* concern about the disclosure of confidential patient information, without the agreement of patients and their carers, or contrary to their wishes

* concern that patients would withdraw cooperation in the provision of the Hospice's services, if abuse were reported

* lack of confidence in the response of the local authority's staff or the police.

The Hospice managers reaffirmed the commitment to protection as an important professional duty, and to the need to cooperate across other agencies to share and test out potential concerns. While the training offered and Hospice managers favoured openness with patients about referral, the meetings often engaged in discussion about whether patients should be informed about referral, and staff were not always confident about an open discussion with patients on this issue. Most staff have worked for a long time in a highly specialised area of healthcare, which rarely involved contact with and knowledge of local authority social services. There was a fear of slow, bureaucratised and authoritarian responses, and of pressure to admit patients to the Hospice to resolve protection issues. One aspect of this was a concern that patients would be admitted for longer periods than necessary and not for their own needs but because of unresolved abuse. Managers emphasised the importance of shared responsibility and the role of the Hospice co-ordinator in making the referral to police and local authority staff.

Another area of concern was in differentiating situations in which it would be appropriate to identify abuse. One member of staff, referring to the No secrets document, said: 'Virtually all our patients are being abused according to these criteria'. Also, there was a concern about anger and anxiety, both commonplace as reactions to the knowledge of impending death and bereavement, or long-standing or culturally-derived patterns of family behaviour. It was felt that these might be possibly judged abusive by professionals, but not seen as such by patients and their families or people experienced in palliative care. The meetings had useful discussions about the complexity of such situations, the need to incorporate a concern for protection into work with patients and their families and the need to bring together multiprofessional views and understandings of the situations being dealt with.

Staff also identified issues of institutional abuse in care and nursing homes that they came into contact with. There was discussion about the particular needs of palliative care patients as their condition deteriorated, which sometimes stretched the experience and competence of non-specialised homes, and the need to support them in doing so. In this connection, the Hospice has a tradition of supplying specialised advice and training to residential care and nursing homes.

Particular risks affecting palliative care patients were also identified. Most palliative care patients are supplied with opioid drugs, which are basically refined forms of heroin. There was concern that, in areas where there is a high incidence of drug abuse, as it becomes known that people are dying of cancer in the locality, they were especially vulnerable to burglary or assault by people trying to obtain drugs. It was also accepted that, while patients needed protection from abuse within the family, the average length of time that patients are known to the Hospice is around twelve weeks. It was surmised that many patients would not want to disturb family relationships, particularly if an abuser was also the carer, when they had only a short time to live and were extremely weak and ill. The discussion centred on the importance of being aware of and responding to risk factors that might increase the need for protection.

These discussions reflected a lack of familiarity with adult protection practice, and the introduction of the policy was undoubtedly a cultural change for the organisation. The audit reported here disclosed a relatively small number of cases identified in the first year, bearing in mind the initial response that abuse on the definitions drawn from No secrets would be widespread if the guidelines were scrupulously followed. However, no cases of abuse had previously been specifically identified, so this increase in reporting is a development. It is surmised that resistance to formal procedures is in tension with concerns about low level abuse of patients.

Audit

Table 1 is a summary of cases arising in 2004 drawn from the referral records and multiprofessional case files. Adult protection was not the major factor in work with the patients, the usual service provision being the main focus of staff involved. Of the fourteen cases referred, one sought and received advice about the Hospice's practice in a protection case, and one was a child protection case affecting a bereaved service user's relatives; these are excluded from the analysis. Of the remaining twelve cases, an average of one a month, three were about a female vulnerable person, nine about a male vulnerable person. Institutional abuse was alleged in two cases, abuse by family members in eight cases and by others in two cases. Neglect by carers was alleged in six cases, financial abuse in five cases, physical abuse in five cases and verbal aggression in three cases (more than one form of potential abuse was identified in some cases). Alcohol and drug abuse by people connected with patients was a factor in three cases.

The outcome of referral was additional protective work or help by the Hospice in seven cases, report to service commissioners and the national regulator in two (institutional abuse) cases, reports to the police in three cases, formal referral to the social services department in five cases and no action in one case not covered by the procedures (more than one outcome resulted in some cases; this can be seen from the Table).

The attitude of patients to referral under the procedures was identified because of concern about the impact of a formal reporting process on the normal care provided by the Hospice. In seven cases, patients were distressed about their position or recognised that they needed help with the issues involved. In two further cases there was a wish for work to be done to help the family member who was a potential abuser. In three cases, there was concern by patients not to disrupt supportive relationships by reporting or denying abuse identified by a professional, probably because of a wish to avoid upsetting family and care relationships.

Referral under the procedures to commissioners of services thought to be involved in institutional abuse was efficiently responded to by the authorities concerned; however little practical help was provided for the particular patients aside from the Hospice's support and involvement. The police responded to referral in the three cases referred to them. In one case, the alleged abuser was arrested, and in the other two cases investigations took place.

However, long-term involvement or protection was not achieved in any of these cases; in one case this would have been desirable. In the five cases reported to social services departments, advice was given. No cases reported to social services departments led to strategy meetings or formal efforts at co-ordination or investigation. In three cases, however, additional work or liaison was undertaken by the social services department. Generally the involvement of the Hospice or other agencies seemed to be regarded as sufficient protection.

Case studies

Three case studies illustrate some of the issues faced; certain non-relevant circumstances have been changed to disguise the identity of the patients and families.

Case 1

Mrs N, very ill with terminal cancer, returned home from hospital with a short time to live. She was a single parent caring for a disturbed son in his early teens, who had been offered but had refused admission to a specialist care and education facility by the local authority's children services. He had been returned home to the care of Mrs N, the children's worker not apparently being aware of the severity of the mother's condition. The son raised with the Hospice social worker fears about what was happening to his mother and what would happen to him: the opportunity for admission to the education facility had come at the wrong time for her. Teenage friends of the son, who were feared to be drug abusers, were visiting and hanging around the home, and the CNS was concerned about the risks involved in leaving restricted drugs for Mrs N. The local authority team leader specifically rejected a referral of Mrs N as a vulnerable adult requiring protection, but following assessment increased the social services care package and put pressure on the children's services to take action to protect the son.

This case illustrates the interaction of advanced illness with other factors in patients' lives, where the serious nature of patients' conditions is often not well understood by community services, and patients may be unaware of or unable to discuss the details and likely course of the illness. It also illustrates the particular problems for palliative care professionals and risks for patients in the management of drugs restricted under the Dangerous Drugs Act. It may also be that increasing separation between adult and children's social services means that it is less easy than in the former local authority social services structure to pursue action relevant to multiple needs within the whole family.

Case 2

Mr T had mild learning disabilities, and had lived in institutions for long periods. However, under the supervision of a community learning disabilities team, he had successfully lived in supported accommodation. For about ten years, he had had a close personal relationship with a neighbour. However, the community learning disabilities team had been concerned that this woman's management of his money was abusive, and had confronted her about this, although Mr T had accepted the arrangements made. On admission for terminal care, Mr T asked to marry the neighbour, and deposited a large amount of money with the Hospice for safekeeping, accepting the neighbour's management of his financial affairs. He conveyed little psychological engagement with life decisions or his care. While a request for a belated marriage is sometimes a marker of financial abuse, it is also fairly common for patients receiving palliative care to make arrangements to put their emotional and financial affairs in order, and the relationship had continued for a prolonged period, which would have made a marriage entirely apposite. The Hospice Chaplain sought a psychiatric assessment of Mr T's mental capacity to make the decision to marry before agreeing to obtain the necessary licence and conduct a ceremony. This pronounced Mr T capable of making the decision to marry, but not necessarily of making financial decisions. Hospice and community learning disability team staff put their concerns about potential abuse to Mr T; he wished his neighbour to continue to manage his affairs. Also, when his sisters visited, they reflected abusive attitudes, and it seemed that the neighbour's involvement needed to be balanced against his wish to resist the sisters' participation in his life.

This case illustrated another particular feature of palliative care, in which the patient has little time left, and wishes to put their affairs in order, often more speedily than they would have wished. It also illustrates the difficulty in making decisions about behaviour that may be long-standing and in many respects reflects the patient's wishes, but might nevertheless be abusive. It also illustrates the possibility that several alternative courses of action available to a patient may be abusive, and the difficulty of making choices in this situation.

Case 3

Mr K was a patient in a nursing home, where a relative managed his financial affairs, but was unduly parsimonious, so that the patient did not receive useful help that his resources would have permitted him to have, to an extent that might have been considered financially abusive. However, he did not wish to disrupt the relationship and support he received from his relative, when he had only a few more weeks to live. A decision was made not to report the situation to the local authority or police since the nursing home remained supportive and protective. The patient's advocate, from a voluntary organisation, following discussion with the Hospice and its community nurse specialist, worked with the patient and relative, in the end arriving at an agreed acceptable position.

Both cases 2 and 3 illustrate situations in which patients with only a short time left, while recognising a degree of abuse, did not want to disrupt relationships that were otherwise offering them emotional and practical support. Both also illustrate the possibility of being concerned about and responding to risk, while still pursuing the patient's preferences.

Discussion

In comparison with the quite formal multiagency procedures enacted in child protection cases, the main approach of the five local authorities whose adult protection processes were experienced by the Hospice was of informal liaison and reliance on other agencies' involvement. There was no evidence of pressure to admit individuals to the Hospice to resolve abuse, although admission was considered otherwise appropriate in one case.

Compared with many people receiving community care services, palliative care patients often have quite high levels of involvement by the Hospice and community services. This makes patients' positions seem relatively secure, and so relying on informal surveillance may seem realistic. However, adult social services teams mostly manage long-term care, and may not be aware of the impact of vulnerabilities likely to be experienced by palliative care patients:

* rapid physical and mental deterioration, that carers, family and community may find hard to adjust to

* the risk incurred by patients using drugs restricted under the Dangerous Drugs Act

* the tension between patients needing to act precipitately to resolve financial and relationship issues and, at the same time, not to disturb patterns of relationships which, while abusive, may offer the only care or support available.

Consequently, hospice staff have not generally found the adult protection procedures useful in managing cases or protecting patients. The risk in this situation is that the importance of protection from abuse as a factor in decisionmaking about care for patients may be downplayed in palliative care, and that assessments to identify potential abuse will not be actively pursued. Management of the symptoms and progression of advanced illness and patient choice in the place and form of care provided at the end of life is a priority for palliative care professionals, and may lead to an acceptance of abuse, where the patient may not wish to tackle the relationship issues raised.

However, in a majority of the cases dealt with, many patients were concerned or distressed by the abuse that they were suffering and wanted action to be taken. Also, in a number of situations, patients wanted to see help offered to their relatives and carers where they were experiencing difficulties often because of the illness or impending death of the patient. In some cases, additional help was secured for patients where they were at risk, recognising that they were coping with very difficult emotional and practical circumstances. Often, therefore, it is likely that identification of need for protection can lead to useful additional help for patients, their carers and families.

The cases also draw attention to the way in which advanced illness often interacts with, and sometimes adds to, pre-existing problems. Alcohol and drug misuse within the family or community was a factor in raising issues about the need for protection in a number of cases and other, sometimes longstanding, personal and relationship problems were apparent.

Conclusion

This audit of adult protection referrals arising in a large palliative care service during a year illustrates a number of the problems of developing effective adult protection policies and practice. The formal requirements of reporting, co-ordination and intervention raised concern among palliative care professionals about conflict with their other responsibilities and the wishes of patients for existing patterns of relationships not to be disturbed at the end of life. The high level of services provided for people with advanced disease perhaps provided a degree of protection which meant that cases raised in palliative care were not among the highest priorities for adult protection services. Nevertheless, where a problem was raised, most patients wanted action to be taken and help to be provided. Additional risks and vulnerabilities of patients with advanced disease and the increased pressure on their carers and families required an awareness of the risk of abuse taking place. This risk often needed to be seen as part of a situation in which past social and personal problems, poor relationships and pressures such as alcohol or drug misuse in the surrounding family and community were continuing and enduring aspects of patients' life experience.

The possibility is that not maintaining adult protection procedures rigorously will lead care workers, such as those in palliative care, who are not centrally involved in adult protection to be less alert to risk of abuse and the need for protection, which is clearly desired by patients. Patients with advanced illness received a high level of services, but relying on this as a form of protection may mean help specifically directed at resolving the risk of abuse does not gain appropriate priority in assessments of palliative care patients and their families.

References

Cohen D (2003) End-of-life issues for caregivers of individuals with Alzheimer's disease and related dementias. Journal of Mental Health ana Aging 9 (1) 3-7.

Department of Health (2000) No secrets: Guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse. London: Department of Health.

Fisher C (2003) The invisible phenomenon: abuse in palliative care families. Journal ofPalliative Medicine 6 (2) 257-64.

Fulmer T, Ramirez M, Fairchild S, Holmes D, Koren MJ & Teresi J (1999) Prevalence of elder mistreatment as reported by social workers in a probability sample of adult day health care clients. Journal of Elder Abuse andNeglect 11 (3)25-36.

Saunders CM (2004) Foreword. In: Doyle D, Hanks G & Cherny NI (Eds) Oxford Textbook of Palliative Medicine (3rd Edition) (xvii-xx). Oxford: Oxford University Press.

Malcolm Payne

Emeritus Professor, Manchester Metropolitan University and Director, Psycho-social and Spiritual Care, St Christopher's Hospice, London

Address /or correspondence

Malcolm Payne

Emeritus Professor, Manchester Metropolitan University

Director, Psycho-social and Spiritual Care

St. Christopher's Hospice

51-59 Lawrie Park Road

Sydenham

London SE26 6DZ

Tel: 020 8768 4500

Fax: 020 8766 4511

Email: m.payne@stchristophers.org.uk

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