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Application of the Code of Health and Disability Services Consumers' Rights

Presentation to Licensed Care Providers

Thursday 27 November 1997

1. Introduction

On 1 July 1996 the Code of Health and Disability Services Consumers' Rights became one of the primary vehicles for reviewing the quality of service provision in the rest home industry. The Code does not operate in isolation, but is part of a system of review which includes the Ministry of Health, Regional Health Authorities, the New Zealand Council for Healthcare Standards and, of course, the residential care industry itself. While organisations external to or independent of the industry play a large part in monitoring, reviewing, developing and promoting improvements in the provision of quality service, it is the initiation and development of procedures for self assessment and self regulation which is essential to the well-being of the industry and, ultimately, the health and well-being of the consumers who are dependent on it for their day to day care.

Today I would like to focus on the relationship between my own organisation and the rest home industry; the common goals each has in ensuring that consumers receive the best possible care from their providers; and the ways in which those goals are met.

I note that one of the objects for which Licensed Care Providers is established is

to encourage a high standard of service and honourable practice in the Residential Care Industry, to promote a friendly relationship among members and others connected with the industry, and a high standard of service therein;

and that another of the objects is "to promote a high standard of training within the industry". The encouragement of high standards of service is also embodied within the Code of Rights - and more than that, it is enshrined in law. Accordingly, every consumer has the right to have services provided with reasonable care and skill, and for those services to comply with legal, professional, ethical, and other relevant standards, such as those set by Licensed Care Providers (LCPs).

While in an ideal world these objectives and rights would be met, with consumers receiving the highest possible standards of care from highly trained and competent, caring staff, the reality is that my office continues to receive complaints in respect of rest homes where a breakdown in staff-patient communication or a low level of staff training has led to the delivery of services with less than reasonable care and skill.

Often, all that is required to resolve such complaints is an open and frank discussion between the consumer, or the consumer's representatives, and the provider. Indeed, I promote and encourage low level resolution whereby consumers and their families take up their concerns directly with their providers. It is my view that the individual rest home providers appropriate recording of their responses to complaints is one of the best means of gauging and ensuring quality within the industry.

Further, self regulation through the monitoring of complaints and the implementation of measures involving both staff and management will ensure not only that complaints do not recur, but also that the objects of LCPs are met, and the Code of Rights is not breached.

The Code of Rights allows a defence for the wary and conscientious provider, who will not be in breach of the Code if he or she has taken reasonable actions in the circumstances to give effect to the rights, and comply with the duties, in the Code. Given that the onus is on the provider to prove that all reasonable actions were taken, it is obvious that self monitoring and strict documentation procedures, for both day to day functioning, and complaints resolution, will contribute to a better evidential picture of what "reasonable actions" were taken in any given situation.

I will be talking today primarily about the general application of the Code of Rights, and the specific role which the Code plays in ensuring quality services in the residential care industry. I will also update you on the involvement of the Commissioner's office in this sector, with reference to particular investigations where issues concerning staff training, supervision and standards gave me particular concern; and also, where better communication between provider and consumer would have alleviated the need for the Commissioner's involvement.

2. The Health and Disability Commissioner Act 1994

The Code of Rights is established as a regulation under the Health and Disability Commissioner Act 1994, which defines the boundaries of the Code and the operation of the Commissioner's office. It is a key element in the new environment of consumer-focused and consumer-accountable health and disability services, and was supported by, and owes its origins to, work done by both major political parties.

The Code gives rights to all consumers when they are receiving a health or disability service, and the duties and obligations in the Code apply to all providers of health and disability services, whether or not those services are paid for. This includes providers of services delivered under contracts with the THA and the managers and owners of privately funded service providers. Indeed, owners and managers of services, although responsible for complying with specific legislative requirements, are still accountable for safety as the Code of Rights imposes a general obligation to ensure safety through Right 4.

The obligation to comply with the Code applies to all providers of health and disability services, and every provider must take action to inform consumers of their rights and enable consumers to exercise their rights. Whether one regards the services offered by a Licensed Care Provider in a particular instance as a health service or a disability service, the rest home and its staff, be they licensees, owners, managers, or shift-staff, are clearly bound by the Code.

The purpose of the Act is

to promote and protect the rights of health consumers and disability services consumers, and, to that end, to facilitate the fair, simple, speedy, and efficient resolution of complaints relating to infringements of those rights (s 6).

This objective is achieved through the implementation of the Code of Rights, through the education of providers and consumers, and through the establishment of a complaints process to ensure those rights are enforced.

The Act provides for third party complaints and Commissioner's initiative investigations both of which are essential to the Act's purpose of promoting and protecting consumers' rights. Accordingly, anyone can make a complaint alleging that a rest home, its management or employee has breached the Code. Complaints have been made to my office by a resident's concerned family members; by admitting staff at the Emergency Department at a hospital; or by concerned co-workers of staff alleged to have acted in a manner which may have breached the Code. Indeed, complaints made by someone other than a resident are the most common form of complaint in this area and no doubt will continue to be so, given the particular vulnerability of older people, many of whom are unable to complain for themselves because they are afraid, or are unaware of their right to complain. In this regard, I would note that if any resident is treated less favourably by reason of a complaint, that in itself would amount to a breach of the Code.

Following receipt of a complaint, an investigation may be in respect of the actions of a specific caregiver, or into the policies and practices of the rest home, or both. Registered nurses may find themselves subject to an investigation even if they are not the specific caregiver or manager, where they have an overall duty to train employees and ensure safety of residents. The potential in the Act for the licensee to be found in breach of the Code for the acts or omissions of its employees or agents should prove a useful incentive to ensure that appropriate systems are in place within the rest home to ensure compliance with the Code. These internal systems could include additions to comprehensive staff training manuals to cover potential areas of complaint, regular inservice training incorporated into the rest homes' routines, documentation procedures, or the adoption of more efficient methods for staff handover, all of which will involve effective communication processes.

3. The role of the Health and Disability Commissioner

As Commissioner, I am charged with the role of promoting and protecting the rights of health and disability services consumers. This includes ensuring consumer safety.

Unlike other areas of law, actual harm is not a necessary element for a breach of the Code.

Right 4(4) states clearly that services must be provided in a manner that minimises potential harm to a consumer and optimises his or her quality of life. In considering whether consumers, either individually or as a group, are receiving services that comply with the Code, the Health and Disability Commissioner Act allows the Commissioner to examine acts, failures to act, and any policy and practice of the provider. The Commissioner may investigate and address systems issues, and does not need to wait until a systems failure results in harm to a consumer.

While a breach of the Code of Rights requires an aggrieved consumer, Nicholls and Brown v the Health and Disability Commissioner makes it clear that the Commissioner is also able to investigate systems issues where these may lead to a breach of the Code. The Commissioner may investigate any action of a provider, and section 2 of the Health and Disability Commissioner Act defines action to include a failure to act, and any policy or practice. The Commissioner may therefore investigate a provider's management of the delivery of health or disability services. Accordingly, if a consumer does suffer any harm, be it physical or otherwise, as a result of the action or omission of a provider, the Commissioner may find the provider in breach of the Code if reasonable actions were not taken to avoid the breach from occurring. In many cases this will require the provider to have had in place a satisfactory system for risk management.

I am obliged to consider the wider public interest and have the power to continue to investigate and act on a matter even where the consumer may consider the matter to be resolved. I am able to investigate on my own initiative and am not limited from taking appropriate action to protect public safety by the fact that no specific complaint has been received. Public interest considerations will, in some situations, necessitate circulation of my final opinion beyond the parties involved, for example, to health professional bodies, RHA's, or advocacy services. There will also be times when the distribution of my opinions to the media for the purpose of wider public circulation will be considered appropriate and in the public interest. These may be anonymised but the Act allows me to publish details. I am also able to refer matters to other agencies where appropriate and this may include the Police, but frequently includes THA's and the Ministry of Health.

4. A Resident's Rights

A rest home is just that - it is the resident's home. Respect for residents is inherent in every act of making that home safe and ensuring that quality care and quality services are provided to all who reside there. While all ten rights in the Code apply to the provision of services within a rest home, it is fundamentally important that Right One - the right to respect - is always borne in mind. Along with Right Three - the right to have services provided in a manner that respects the dignity and independence of the individual - the right to respect is the cornerstone of the Code. Most of the other rights are an elaboration on this basic requirement. Each consumer must be viewed as an individual and shown respect for his or her intrinsic value and uniqueness. Providers should be aware of each individual resident's capabilities and needs and should respond accordingly. Increasingly, I am becoming aware of instances in some homes where, because of their very uniqueness - be it as a result of dementia, mental illness, behavioural difficulties, other health problems, or simply, old age, residents' basic rights are being abused by their carers.

The Code provides that consumers have the right to:

be treated with respect;

be free from discrimination or exploitation;

receive services which respect their dignity and independence;

receive services of an appropriate standard;

be communicated with effectively;

be fully informed;

make informed choices;

take the appropriate support person or persons; and

complain about any aspect of the service they receive, and have their complaint taken seriously.
You may find it interesting to hear that awareness of the Code amongst rest home providers was measured at 67% in 1997, up one percent from 1996. Of rest home occupants surveyed, 28% were aware of the Code and 17% of the advocacy service. Twenty percent recalled seeing resources published by the Health and Disability Commissioner, such as posters and pamphlets.

So, how can we work together to increase these figures? I will continue to promote and encourage awareness of the Code, which I hope to achieve today by positively identifying ways in which you, as providers, can improve your services. However, I would also point out that many of my recommendations and suggestions arise from rather negative origins - that is, complaints from your consumers. Indeed, in the year 1 July 1996 to 30 June 1997, six complaints concerning rest homes resulted in a finding of a breach of the Code - the highest result over the year by a service provider type, followed by General Practice (5), and Pharmaceutical (4). In that financial year, 105 rest home licensees and 86 rest home managers were the subject of a complaint. (This does not mean that there were 191 complaints about rest homes, as some complaints involved both manager and licensee).

Our experience so far has indicated difficulties are most likely to arise in respect of the rights relating to appropriate standards and communication. It is these areas that I would like to focus on today.

Services of an Appropriate Standard - Right 4

By far the majority of complaints about rest homes to date have concerned alleged breaches of Right 4, the right to services of an appropriate standard. Right 4 states:

1) Every consumer has the right to have services provided with reasonable care and skill.
2) Every consumer has the right to have services provided that comply with legal, professional, ethical, and other relevant standards.
3) Every consumer has the right to have services provided in a manner consistent with his or her needs.
4) Every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer.
5) Every consumer has the right to co-operation among providers to ensure quality and continuity of services.

In particular, providers must take all reasonable steps to eliminate potential harm from occurring and, where elimination is not practicable, to minimise potential preventable harm.

Certain common themes have emerged from complaints in this area.
First, the interface between medical services and rest homes does not always work efficiently enough to provide services appropriate to the needs of certain residents. There is anecdotal indication that some rest homes are retaining residents whose needs extend beyond the level of care which the rest home is able to provide. For example, there seems to be a reluctance by rest homes to obtain medical services out of hours, or outside usual GP prearranged visits. In other situations, residents who fall are initially assessed by inappropriately qualified persons, or are not medically assessed soon enough. There have also been occasions where a patient's condition has declined for reasons which were not related to the standard of care provided but have caused the family to become anxious about the possibility of fault. Better involvement by medical professionals would have been reassuring in these circumstances.

This issue needs to resolved for the benefit of residents. The Code does not stipulate who should be responsible for the evaluation of a resident's clinical needs, nor does it determine who should decide whether a GP visit is warranted. However, it does stipulate that decisions about access to GPs be made with reasonable care and skill - this obviously requires the participation of suitably qualified staff. The rest home and GP are enjoined to co-operate to ensure continuity and quality of care. If this does not happen, both sets of providers may be accountable under the Code.

Secondly, many complaints concerning lack of appropriate standards can be traced to inadequate staffing levels, combined with a lack of expertise and experience in the staff. While I acknowledge that the level of staffing is often a funding issue which cannot be easily remedied, there is no excuse for the low level of staff experience or qualification.

Sometimes, staff lack the knowledge to provide even basic daily care to residents - a common complaint is the lack of appropriate management of incontinence. Recently, I had cause to investigate a Home where staff were inadequately trained in the techniques and protocols of showering residents. Indeed, the lack of clarity of the staff on procedures and the expectations of hygiene care at this rest home was a contributing factor to an overall poor standard of care being provided.

As an example of poor staffing practices, the following occurred in one rest home under investigation:

One staff member, with no previous nursing or caregiving experience, completed a single night shift under the supervision of another staff member, and was then immediately placed in the sole charge of night shift;

Another staff member stated that staff were often in sole charge, and required to bathe residents, while also preparing the meal for the next day, and preparing residents for bed.

Ultimately I found that the licensee and manager of the rest home had failed to provide a level of training to staff necessary for a consistent approach to hygiene care and the reporting of residents health needs to the Charge Nurse. Staff were not trained to manage behaviour problems, or instigate appropriate management techniques, nor were there appropriate quality assurance standards in place. Given that staff were expected to complete a number of tasks at one time, they were unable to optimise the quality of life of the residents.

The obligation to provide services consistent with the needs of the consumer, and to provide a safe environment for that consumer, necessitate regular, ongoing training and awareness by staff of the needs of the elderly, including the care and handling of those displaying difficult behaviour due to dementia. Where necessary, outside guidance should be sought to assist in this training.

I would urge rest homes which do not already have the following documentation procedures and training measures in place for their staff, to remedy the situation immediately:

Comprehensive staff training manuals;
Comprehensive and ongoing staff training and refresher programmes;
Communication books to pass on information to other staff about all issues with residents, for example, about residents' lost property or equipment in need of replacement; these should be checked by the manager;
Inservice training at a minimum of every two weeks covering topics such as diabetes, incontinence (with a specialist nurse), and asthma;
Appropriate use of incident reports for all significant events - there is no such thing as "usual day";
Full and comprehensive shower procedure lists on walls of all bathing areas;
Instruction in behaviour management techniques.

Communication and Informed Consent - Rights 5 and 7

A dilemma which frequently arises for those providing residential care for older people is the extent to which family members should be involved in decisions regarding the older person's care. Ideally, the resident, the resident's family and the rest home itself should work towards providing an environment most suited to the needs of the resident. This would be consistent with the aim of low-level complaint resolution promoted by the Act. For instance, in a recent opinion I suggested that the rest home manager meet with the resident's family on a regular basis, to discuss and agree on matters of concern arising. The attendance of the Registered Nurse or regular caregiver would also be useful in such discussions. These discussions could be used, where necessary and appropriate, as the impetus for adaptations in management of certain health concerns in respect of that individual - for example, the management of incontinence, where it is important to consider the consumer's right to dignity and respect, bearing in mind that such matters may be humiliating for the consumer; or bed sores - for instance, family members may be made anxious if they visit their relative who is in bed, rather than seated in the living area of the home. Managing these issues should accommodate family visits or outings.

I would also suggest that next of kin, who may be anxious or concerned about any changes in care management, are regularly advised of current care plans for their relative, and any subsequent changes in treatment, to avert unnecessary anxiety over their loved one's condition. This would seem to be a simple and obvious aspect of patient care management and communication, but is often overlooked. It is apparent that the first two weeks after a family have to admit a relative to a rest home are the most important in terms of communication and the time in which most usually complain. While communication with families is not necessarily an obligation under the Code, many rest homes do ensure this occurs and have incorporated a protocol of this sort into their standards.

It is also important that families of residents feel involved in the planning of care for their family member and the operation of protocols and policies. For example, as a result of one complaint which I investigated this year, the following changes to policy were implemented:

The primary nurse is allocated to the resident prior to admission and where possible meets the family before admission;
The primary nurse must be on duty on the day the resident is admitted;
All documentation must be completed with the family and/or resident within 24 hours of admission and a checklist will be drawn up;
A family meeting is organised within one month of admission to discuss any issues of concern or care that need to be clarified;
An assurance has been given that the needs of individual residents are taken into account and procedures and policies have the flexibility to allow for individual requirements and preferences.

Although staff communication with residents' families is vital where the resident is limited in their own ability to communicate and give informed consent, there is another side to this problem. What sometimes happens is that the family attempts to take over control of decision making in situations where the resident is in fact capable of making decisions and is the appropriate person to do so. The Code recognises that services should be provided in a manner which allows the resident to exercise as much independence as possible in the circumstances. It goes further, however, and imposes a presumption of competence through Right 7, consistent with that in other legislation such as the Protection of Personal and Property Rights Act.

There is also another element to this problem - that is, where residents have no family at all and, possibly, no-one to complain on their behalf. For example, one woman who had been a resident at the same home for 16 years had very limited family contact, and the poor standards of care she received could have gone unchecked for many more months but for her falling and requiring emergency medical assistance and admission to hospital. On admission, she was in a neglected state and the admitting staff complained to my office on her behalf.

This serious case causes me to reiterate the point that rest home residents are particularly vulnerable, and breaches of their rights can all too easily go unchecked, because they are afraid to, or do not know that they can, complain. Reluctance or inability to complain may arise because of disability, fear of reprisal, for cultural reasons or simply because many residents may consider it discourteous. The fear that a complaint may make the situation worse also impacts on family members, many of whom are reluctant to complain out of concern for the ongoing care of their relative. Some families, rather than complaining, often unnecessarily move relatives, which is very distressing for the resident. I would be particularly concerned if rest home staff and managers operated under the mistaken belief that just because their residents are not able to make complaints about them, they are "getting away with it". Any question of abuse, whether physical or verbal, should result in a formal investigation, follow-up and interviews with other staff. Such actions demonstrate a desire to keep residents safe and not "cover-up" breaches of the Code.

Fortunately, there will usually be third parties, such as concerned staff members, who will blow the whistle. As an example, I draw your attention to a situation where a caregiver was witnessed by a co-worker to assault residents and call them by derogatory names. This was not an isolated incident, and I am deeply concerned that other homes are employing people who would subject residents to physical or mental abuse. Caregivers are in a position of trust and have a fiduciary duty to ensure residents are free from any exploitation and physical violence. I would again emphasise that section 72 of the Health and Disability Commissioner Act refers to employing authorities having vicarious liability for a breach of the Code. Therefore, anything done or omitted by a person as an employee of an employing authority shall be treated as done or omitted by that employing authority as well as the employee.

While third party complaints from employees and the vicarious liability rule can provide useful monitors on the quality of service, I suspect that too often the complaint evolves into an employment issue, or stems from one. In some cases I understand that staff members making complaints themselves become the objects of reprisal from management. To avoid this, rest homes should ensure they have "safe" avenues for employees to complain.

I also recognise that disgruntled employees may bring complaints and this can be disruptive and unproductive for both my office and the rest home. The investigations that have taken the greatest time are usually those where the rest home does not co-operate and the Commissioner's investigation goes on for many months. I recently decided this is not constructive and have begun an active policy of demanding information and if it is not forthcoming of taking proceedings. Only two weeks ago I initiated High Court proceedings to obtain information from a Crown Health Enterprise.

Further, let me emphasise that while staff relationship and employee issues are not my concern, I do take a very dim view of intimidation of staff who draw possible Code breaches to my attention. Also, any manager who hinders a Commissioner's investigation, for example by telling staff not to speak to one of my officers during a site visit, runs the risk of committing an offence under the Health and Disability Commissioner Act.

5. Responsibility for Setting Relevant Standards

The rest home industry has changed dramatically in past years and existing standards, such as those contained in the Old People's Homes Regulations, are badly out of date and in need of review. With increasing numbers of older people and greater numbers being supported at home, rest home residents have a higher general level of need than was previously the case.

Central to the goal of obtaining the "highest quality of care for the elderly" and ensuring the integrity of the industry is an urgent need for the development of relevant industry standards. I would like to note at this point the current discussion being undertaken by the Ministry of Health into these issues. The Ministry recently released a discussion document entitled Taking Care II which explored options for review of the industry and its standards. I was pleased to be able to make submissions on this. I understand that a paper was considered by the Ministers last Wednesday and deferred until yesterday (26 November) for discussion. The paper provides two options:

revoking present safety legislation and replacing it with new safety legislation (ie the Taking Care II document), or
revoking present regulations and relying on existing remaining mechanisms, such as the Code of Rights, THA contracts, Fire and Safety legislation, the Building Code, and some Occupational Safety Regulations and statutes, as well as a plethora of industry self regulating standards and protocols which some providers adopt.

I am aware that the Minister prefers the second option, but expects some opposition to this from other Cabinet members. I also prefer the latter choice, and argue strongly that responsibility for quality within the rest home industry ultimately lies with the industry itself. Of course these standards must be consumer focused and input should be obtained from the general population as well as from groups representing our older populations.

The prescriptive nature of many of the current regulations governing service providers has not, in my view, added substantially to the protection of consumers. In my experience the imposition of prescriptive standards inhibits the development of best practice standards by providers, and in some cases I have observed that services are tailored to the minimum standard required. In addition, prescriptive standards run the risk of rapidly becoming outdated. Therefore, I support the requirement for providers to have in place safety management systems through which risks to consumers are identified and managed. This is consistent with the approach of the Code of Health and Disability Services Consumers' Rights which was carefully drafted to avoid the sort of difficulties I have mentioned. In drafting the Code, I considered that requirements expressed in terms of general principle enabled and required providers to respond flexibly to the needs of the consumers of their particular service. Enforcement of the Code of Rights will inevitably assist in the identification of relevant standards for the operation of rest homes. The publication of case notes by my office will, over time, help entrench an understanding of and responsibility for the provision of consumer-focused, quality care. However, the Code is not, and should not be, the primary mechanism for the establishment of standards.

While we will have to wait and see what happens in this area, it is clear that now is the time for those within the industry to seize the opportunity to take ownership through self regulation to ensure credibility and respect.

6. Case Notes

To illustrate the application of the Code to Licensed Care Providers, I have attached three opinions which have recently come out of my office. All identifying information has been removed.

The first case, which I discussed earlier, involved a caregiver physically assaulting and verbally insulting residents. Following a meeting between the caregiver, the Manager, and a Service Workers Union representative, it was decided that the caregiver had breached the Rest Home's "House Rules". My own investigation concluded that there had also been a breach of Rights 1, 2 and 3 of the Code. I recommended that the caregiver attend an anger management course to assist in developing more appropriate ways of managing situations with difficult residents.

The second case also involved issues of care plan management. It was my opinion that the combination of full registered nurse coverage at the Home, and regular staff inservice training, meant that the manager and staff at the home were providing an appropriate standard of care for the consumer. The resident's care in the circumstances was reasonable and his decline in condition was not related to the care he received. However, I did feel that there could be better communication between the manager and the consumer's family.

The third case also dealt with communication issues. It was acknowledged that there was a breakdown in communication between the staff and family as to what the consumer's care should have been. I found that where there was uncertainty about a consumer's competence and level of understanding, the consumer's family should have been kept adequately informed. I reminded management and staff of their obligation to respond to the concerns of residents' family, and that staff bear the onus of initiating and maintaining effective communication.

7. Conclusion

In closing, I would urge professional groups such as Licensed Care Providers to actively monitor their members. I understand that LCP was in fact established because there was an identified need to strive to maintain high(er) standards of quality care. I also appreciate the fact that LCP members must supply evidence of their audit scores and accreditation to the Board of Directors before becoming a member, and I firmly believe that only those who meet the requirements and continue to meet them over time should be allowed to remain in the professional group.

You may also like to consider the following suggestions, which are aimed at achieving high standards of care through self regulation.

Owners and managers of rest homes should have a requirement for "x" amount of training per annum. A set number of training hours should be required for both management and staff

Staff training programmes must be clearly established and evidence of their implementation should be readily available.

Protocols for communicating with family on matters regarding the consumer's care, which could be implemented with the consumer's consent, should be established.
Procedures and protocols should be reviewed annually.
Accreditation through ISO, or the NZ Council of Healthcare Standards, should be a prerequisite of professional body membership, and potential residents and their families should be advised of the Home's affiliation and standing.

Through such differentiation and self-monitoring within the industry, consumers will have the ability to choose those resthomes which are actively ensuring that an appropriate level of service is provided. Accordingly, a confidence in the industry, which is currently lacking, can be promoted; the relationship between my own organisation and the rest home industry will be a positive one; and the common goals we each have in ensuring that consumers receive the best possible care from their providers will be achieved - as will, I hope, the objectives of Licensed Care Providers and the rights and needs of consumers.