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Review of the Rest Home Industry

Presentation to the New Zealand Licensed Rest Homes Industry Conference

Wednesday 11 June 1997

1. Introduction

On 1 July 1996 the Code of Health and Disability Services Consumers' Rights became one of the legislative means of ensuring the quality of service provision in the rest home industry. However the Code does not operate alone. It is part of a system of review which includes the Ministry of Health and the Regional Health Authorities. The rest home industry itself also has a part to play in this review process. I note that one of the stated purposes of the Rest Home Association is to "ensure the highest quality of care for the elderly." One of the best means of gauging and ensuring quality is keep records of how individual rest homes respond to and handle complaints. In the task of ensuring quality care, the industry works in partnership with the various monitoring agencies.

Today I will talk about the role which the Code of Rights plays in ensuring quality services and I will update you on my office's involvement in this sector. I will also address the issue of standard setting, and the relationship between the various enforcement bodies who review the rest home industry.

2. The Health and Disability Commissioner Act 1994

The basis of the Code of Rights is the Health and Disability Commissioner Act 1994 (the Act). The Act 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 obligation to comply with the Code applies to all providers of health and disability services. Whether one regards the services offered by a rest home in a particular instance as a health service or a disability service, the rest home and its 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 education of providers and consumers, and through the establishment of a complaints process to ensure enforcement of those rights.

The Act allows for third party complaints, which means that anyone can make a complaint alleging that a rest home or its employee has breached the Code. Alternatively, the Commissioner may investigate on her own initiative. Provision for third party complaints and Commissioner's initiative investigations is essential to the Act's purpose of promoting and protecting the rights of consumers. Complaints made by someone other than a resident, whether by a family member, friend or member of the rest home staff, are the most common form of complaint in this area and no doubt will continue to be so. Older people are particularly vulnerable and many are unable to complain for themselves. It is especially difficult to complain about those who provide one's day to day care, and many consumers quite simply are afraid to complain. If anyone is treated less favourably because they have complained, that in itself is a breach of the Code.

An investigation can be in respect of the actions of a specific caregiver, or into the policies and practices of the rest home, or both. 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 gives rest homes a strong incentive to put in place systems to ensure compliance with the Code.

3. Implications of the Code of Rights

All ten Code Rights apply to the provision of rest home services. I intend to focus today on those rights which relate to appropriate standards, communication and informed consent, and the right to complain. Experience so far has indicated that these are the problem areas. In addition, I would like to highlight three opinions which arose from complaints about rest homes as an illustration of the application of these rights.

Appropriate standards of service

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.

Certain common themes have begun to emerge from complaints. One concern, which has direct relevance to the Code and which underlies many complaints, is the fragmentation of the residential care service sector. Consumers are entitled to co-operation between providers to ensure quality and continuity of services, but all too often providers are motivated by competition. With limited funding they joust for position to the detriment of consumers.

A particular concern is the inability of some rest homes to provide services appropriate to the needs of certain residents. There is anecdotal indication that some rest homes are retaining residents whose needs exceed their ability to provide adequate care. Not only may staff levels be inadequate but staff may also have insufficient levels of skill. This appears more likely to occur in areas where there is an excess of beds. The rest home industry consistently states that the levels of care are limited by RHA's underfunding. To resolve this impasse, clear standards for review, monitoring and coordination by Assessment, Treatment and Rehabilitation teams are needed to ensure that residents are placed in suitable continuing care facilities. These assessment teams are themselves providing a disability service which must meet the requirements of the Code. Standards for both assessment and service delivery should be consistent throughout the country.

In the absence of industry-agreed standards, the prime responsibility lies with the rest home to ensure that their residents receive care which meets their individual needs. If coordination with other agencies is required it is the rest home's responsibility to make the necessary arrangements.

GP access to rest homes is another issue which needs to resolved. The Code does not stipulate who is responsible for the evaluation of a resident's clinical needs, nor does it determine who decides whether a GP visit is warranted. However, it does stipulate that decisions about access to GPs are made with reasonable care and skill - this obviously requires the participation of suitably qualified staff. The rest home and GP must co-operate to ensure continuity and quality of care. If this doesn't happen, both sets of providers may be accountable under the Code. Decisions about GP access must be based on need rather than cost.

Many complaints about lack of appropriate standards can be traced to the absence of suitably trained staff. Sometimes, staff lack the knowledge to provide even basic daily care. Incontinence management, for instance, is often complained about. The Code requires that services are consistent with the needs of the consumer and take place in a safe environment. This necessitates regular training and awareness. Staff need special training in the needs of the elderly, including the care and handling of those displaying difficult behavior due to dementia. Where necessary, external training should be used. Relying on "learning on the job" is dangerous and can lead to bad practices becoming entrenched.

Communication and Informed Consent

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. No one would dispute that, 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.

What sometimes happens in practice, however, is that the family attempts to take over decision making in situations where the resident is 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, consistent with that in other legislation such as the Protection of Personal and Property Rights Act.

Right 7 states:

1) Services may be provided to a consumer only if that consumer makes an informed choice and gives informed consent, except where any enactment, or the common law, or any other provision of this Code provides otherwise.
2) Every consumer must be presumed competent to make an informed choice and give informed consent, unless there are reasonable grounds for believing that the consumer is not competent.
3) Where a consumer has diminished competence, that consumer retains the right to make informed choices and give informed consent, to the extent appropriate to his or her level of competence.

A correct balance must be maintained between involving the family in the consumer's care, and respecting the rights of the consumer to make his or her own decisions. It may be useful to establish a protocol for communicating with family on matters regarding the consumer's care, which could be implemented with the consumer's consent. Where the consumer is not competent to consent or to make decisions regarding his or her care and no power of attorney has been granted, consideration should be given to the appointment of a welfare guardian.

While the Code does not oblige rest homes to communicate with families, many ensure this occurs and have incorporated a protocol into their standards. It is in the rest home's best interest to keep families up to date. Where a family has not been in touch with their relative for some time, they may be shocked at the deterioration in independence and quality of life and the rest home often bears the brunt of the family's concern.

Provision in the Code for use of advance directives is another area where residential care givers may increasingly find themselves having input. Basically, an advance directive is a means of indicating the consumer's choice about a future health care procedure. The directive is made at a time when the consumer is competent, and is intended to be effective at some time in the future when he or she is no longer competent. The health care procedure about which the consumer is making a choice may relate to a service provided by the rest home itself. Alternatively, it may relate to a procedure to be carried out by a GP or hospital. (Further information on the use of advance directives is set out in my recent paper to the NZ Hospitals Association Conference "chance or Choice - Staying Motivated in Aged Care" which is available from my office on request.)

Complaints

As previously mentioned, anyone can complain about standards within a rest home. Due to the particular vulnerability of rest home residents, complaints are most likely to be made by a third party other than the resident. Residents may be reluctant or unable to complain because of disability, fear of reprisal, cultural reasons or simply because they 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.

I wish to comment on some particular areas of complaints which the industry must be proactive in addressing.

Family intervention

Rather than complain to the rest home and sort out their problems directly, many families move their relatives to another home. Often only then will they complain about the former home. As Commissioner I have seen many instances where residents are moved, only to find the new environment still does not meet their needs. The person who usually loses out on this is the consumer. The rest home is exactly that - their home. They have made friends and become accustomed to their surroundings. Constant moving is a disruption to their quality of life. Indeed, if asked, the resident may well choose to stay put. In the interests of their residents, and in their own interests, rest homes must take positive steps to ensure they make it easy and non-threatening for residents and families to voice their concerns.

Employees

Rest home employees often make complaints to my office about the care of residents. While this can provide a useful monitor on the quality of service, too often a complaint about standards turns out to be an employment issue. Again, rest homes should ensure they have "safe" avenues for employees to complain. Too frequently in the last 12 months my office has been inappropriately involved in employment disputes. While some employee complaints have been valid, most have resulted from discontent with an employer or manager. Residents and families suffer the consequences. This is a matter which must be addressed by the industry.

Anonymous complaints

I receive many anonymous complaints about rest homes. They may come from employees, lobby groups (eg Age Concern) or visitors. Because of the particular vulnerability of many rest home residents and their inability to complain for themselves, such complaints cannot be ignored. I have been given the power to investigate on a "Commissioner's initiative" precisely because problems may come to my attention without a specific individual complaint being made.

However, anonymous complaints give rise to a number of difficult issues. An investigation cannot proceed without sufficient, clear facts to enable the provider to have a fair opportunity to respond. Difficulties of evidence may also arise without the full involvement of the complainant. Wherever possible, therefore, I encourage the person raising the concerns to participate fully in the processes of the office.

4. Case notes

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

The first case involved a complaint by a family member that a resident was to be moved from a single to a double room. In this particular case, I found no breach of the Code. The decision to shift the resident was made to meet his specific health needs and it was agreed that the shift would not affect his standard of care. While I was not required by the Act to make suggestions, I did so in this case to help resolve the impasse.

The second case involved a sexual assault on a woman resident of a dementia unit by a male resident. The case highlighted the need for appropriate induction and training of all staff, especially those dealing with residents in a dementia unit, and the importance of adequate staffing levels at all times. It is inherent in showing respect and treating a resident with dignity that every incident of this nature is taken seriously and dealt with accordingly.

The third case dealt with the physical care of residents, the quality and quantity of food, the handling of residents' finances and staffing levels. The importance of policies and practices to ensure residents and their families are properly informed of incidents and the residents' current health status was central to this case, as was the need to keep a proper and accurate system of record keeping. In this case, the need for proper records gave rise to particular difficulties as the finances of several residents were controlled by the licensee

5. Where do the responsibilities lie? Who sets the relevant standards?

Where do the responsibilities lie? Who sets the relevant standards?
It is widely recognised that existing standards for rest homes, such as those contained in the Old People's Homes Regulations, are badly out of date and in need of review. The rest home industry has changed dramatically in past years and existing regulations are out of touch with current conditions. With increasing numbers of older people and greater numbers being supported at home, rest home residents have a higher general need level than was previously the case. The Old People's Homes Regulations are inadequate to reflect the current needs and responsibilities of the industry.

Providers seeking to maintain a quality service frequently call for a clear set of quality standards for residential care. This call is supported by those who monitor the industry and who are hampered by the lack of appropriate documented standards by which to ensure accountability.

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.

Right 4 (2 ) of the Code states that:

Every consumer has the right to have services provided that comply with legal, professional, ethical, and other relevant standards.
The Code therefore incorporates other relevant standards by reference and provides a mechanism for their enforcement. It does not itself set specific industry standards, rather it demands them. One of the principal barriers to ensuring quality service is the lack of such standards. In the absence of particular standards in an individual rest home I look at those which are generally accepted, for example the Ministry of Health "standards of care for old people's homes" guidelines.

In the past, the Ministry of Health has taken responsibility for standard setting. I understand that the Ministry has not yet decided whether to amend existing regulation or to undertake a general review of regulation in the residential care sector. The industry itself now has an opportunity to take ownership of its regulation to ensure credibility and respect. The goal of obtaining the "highest quality of care for the elderly" and ensuring the integrity of the industry require the urgent development of industry standards. I believe that responsibility for quality within the rest home industry ultimately lies with the industry itself. These standards of course must be consumer focused with input from the general population as well as from groups representing our older people.

6. Who monitors these standards?

Fragmentation of providers is one of the prime causes of failure to deliver quality services. Fragmentation among those who monitor those services also needs to be addressed.

The Ministry and the RHAs are represented at this conference. Both play a part in reviewing the rest home industry and the relationship between them needs to be clarified. It is important that each has a clearly defined role and takes responsibility for the performance of that role to ensure the maintenance of standards. Unclear demarcation of roles must not impact on rest home residents, many of whom are extremely vulnerable and lack the ability to protect themselves.

I am pleased to note that the Minister of Health last week received the report of the Steering Group set up to report on the roles and relationships of agencies in the health sector. I sincerely hope that the issues of interfaces between the Regional Licensing Offices division of the Ministry of Health and the RHAs have been addressed in this report. The public should not bear the consequences of lack of accountability due to ineffective monitoring structures. In the meantime I urge the these two agencies to work more closely together within the restrictions of the current law.

The establishment of the office of the Health and Disability Commissioner does not mean that RHAs or the regional licensing offices no longer have responsibility for the maintenance of safe, quality services. Certainly, individual complaints about breaches of the Code now come to my office. RHAs should however be taking action to enforce contracts for the provision of a quality service. Within the limitations of the regulations, regional licensing offices must also step in to address residents' safety or the fitness or otherwise of a rest home to hold a license. Both these agencies have a role to play in ensuring quality and protecting consumers and must work cooperatively in the interests of those consumers.

The Health and Disability Commissioner's Office was not established as a primary monitoring agency. If the Industry, Regional Licensing Office and RHAs establish effective standards and quality checks, the calls on my office should diminish.

7. Respect and Dignity

Respect and dignity are fundamental to people using rest homes. These rights are 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.

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 quality care.

The primary obligation to set appropriate standards and monitor these must lie with rest home industry itself.