Correspondence: Joseph Elias Ibrahim, Health Law and Ageing Research Unit, Department of Forensic Medicine, Faculty of Medicine, Nursing and Health Sciences, Monash University, 65 Kavanagh Street, Melbourne, VIC 3006, Australia, Tel +61 39 684 4364, Fax +61 39 684 4475, Email ude.hsanom@miharbi.hpesoj
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Resident safety and welfare in long-term care (LTC) is being redefined as the focus shifts to promoting an optimal quality of life especially in LTC. Achieving this requires contemporary practice to improve the organization and staff’s ability in identifying, communicating, documenting, and managing the risks that arise from the choices a person makes in pursuit of a better quality of life. This article is a narrative realist style review examining the issues of how to manage risks for older residents living in LTC. The issues are examined in six stages: context, identifying, communicating, documenting, enacting, reviewing and reflecting on how choices are made and risks managed. It is important for individuals to be supported in making an informed choice – this requires identifying, providing, and communicating the available options and the potential consequences. Documenting consent, perhaps with formal risk agreements, provides clarity for all involved and assists in determining how and who is responsible for enacting choices. Reviewing and reflecting upon the decisions and actions to enact choices are familiar to prudent LTC managers who implement and monitor robust governance systems. Learning from these experiences is essential to better meet individual resident, staff, organizational, and community expectations. Improving practice at each of the six steps should reduce adverse professional and legal repercussions and enable the resident, families, and staff to better cope with respecting choices when a known harmful outcome eventuates.
Keywords: risk management, choice, long-term care, dignity of risk, quality of life, forensic gerontology
The rapidly aging populations of high-income countries are accompanied by significant concerns about the quality of care and quality of life of older people. 1 – 5 These concerns also exist in the provision of long-term care (LTC), where the quality of care has a substantive impact on older persons’ quality of life. 2 LTC usually refers to facilities that provide services, accommodation, and supervision or assistance to older persons with activities of daily living and are also often described as a nursing home, convalescent home, skilled nursing facility, social care, care home, rest home, or Residential Aged Care Service. 1 , 6
Resident safety and welfare in LTC is being redefined as the focus shifts to promoting an optimal quality of life. 2 , 4 , 7 Achieving this requires applying contemporary knowledge of best practice for identifying, communicating, documenting, and managing the risks that arise from the choices made in pursuit of a better quality of life. Basic principles underpinning risk management, including communicating with persons involved and reviewing and monitoring the risk management process, 8 are applicable in LTC settings to ensure a comprehensive approach to risk management. To successfully implement an optimal program requires recognizing and addressing both the technical aspects and nontechnical aspects of managing risk.
The technical aspects involve adhering to science and law, ie, the principles of evidence-based practice, person-centered care, professional and legal duty of care, as well as respecting the rights of an individual. The nontechnical or humanistic aspects are equally important, as promoting an optimal quality of life often creates perceived and actual high-risk situations that are emotionally laden, ethically complex, and morally confronting.
Enacting decisions of older people is intended to improve quality of life and yet may lead to serious injury or death. This may be psychologically discordant and distressing for the carer, family, and health professional – who prioritize safety for the patient or resident. Managing the risks and consequences requires organizational and societal processes that support and promote confidence and illustrate a commitment to enacting the residents’ choices.
Patient safety is defined by the WHO 9 as “the prevention of errors and adverse effects to patients associated with healthcare”. While this definition was not directly intended for LTC, it has influenced health care professionals by reinforcing the view that no harm should ever occur due to errors of professional practice. This is detrimental to promoting and supporting the concept of “dignity of risk” (DoR). Ibrahim and Davis 10 proposed that the DoR concept refers to “an individual’s personal dignity [being] manifested, in part, by their ability to remain autonomous, 11 , 12 and [this] engenders risk-taking… 13 with subsequent enhancement of personal growth and quality of life”. 13 , 14
Addressing this issue is gathering urgency as globally, by 2050 the number of people over the age of 80 years will triple from 137 million in 2017, to 425 million in 2050, 15 and a significant proportion will have dementia and impaired decision-making capacity. 16 This coincides with the growing emphasis on preventing elder abuse 17 and promoting the rights and choices of older people. This narrative review article examines how to manage risks for aging patients by focusing on the processes required to enact and support DoR for residents living in LTC.
We begin by examining the context or culture using an illustrative everyday scenario requiring risk management in LTC. Following on from this, the concepts of choice and risk are explored, explaining how risk could be managed while still facilitating an individual’s choice. The third section considers the importance of communication in enabling safer risk-taking focusing on the role of consent and capacity. The fourth section examines the importance and nature of documentation to facilitate DoR for all persons involved. The fifth section addresses challenges and approaches for enacting choices with an emphasis on accepting or mitigating, rather than eliminating risk. The article concludes with a discussion on the importance of reviewing and reflecting upon the outcomes and consequences of enacting such choices.
The literature search and narrative review were conducted using the approach best described as a realist review. The contributors are a multidisciplinary team with skills, knowledge, and experience in geriatric medicine, public health, nursing, injury prevention, risk management, resident safety, geriatric and gerontology research and law. A realist approach acknowledges the limitations of traditional systematic reviews for complex policy interventions. 18 Further, the virtual absence of empirical-based research in LTC, addressing the management of risk while promoting choice for residents, negates the application of a traditional systematic review.
The review consisted of a search strategy of published literature in the English language focused on identifying issues and approaches to communication, documentation, and decision-making surrounding risk-taking in the LTC setting. There were no restrictions on the year of publication, and the following databases were searched: MEDLINE, CINAHL, Embase, AgeLine, Cochrane Library, AustLII, and Google Scholar.
All study designs published in the English language including case studies were considered for the review. The focus was on LTC setting; however, when necessary, examples from other institutional settings were considered. Community style accommodations such as private homes, family homes, and private shared living were not included. We sought to identify concepts and principles pertinent to managing risk and enacting choice for each component of what we deemed a logical pathway for managers and the “point of care” practitioners to address.
The context is perhaps more easily understood as whether the community and organization are ready to enact DoR, recognizing and accepting that there will be occasional adverse outcomes. Addressing these issues requires understanding the medical, social, political, ethical, religious, economic, and legal aspects of the situation, as well as understanding the roles and responsibilities of each person and organization. Consider the following scenario:
Mary is 80 years old and has had a stroke causing swallowing difficulties and a loss of mobility being predominantly bed bound, with little financial support and limited manual dexterity. Mary wants to celebrate her birthday with champagne and strawberries to relive experiences of happier times.
Mary cannot leave the nursing home to obtain the champagne, does not have enough money to buy it, and needs help to drink it.
Mary’s son leaves the money to cover the cost of the purchase, which is transacted by her grandson, who provides a magnum of French champagne and fresh strawberries to a colleague who is also a personal care worker. The personal care worker explains to the registered nurse that the champagne and fresh wild strawberries are on Mary’s bedside table…
Before anything happens, Mary’s daughter discovers the champagne and fresh wild strawberries. She becomes concerned that the alcohol will interact with medication and that Mary will choke on the strawberries and reports the incident to the nursing home manager, and nursing registration board, and seeks to revoke the son’s legal standing as Mary’s guardian.
The nurse pours the champagne into a glass flute with a strawberry at the bottom and assists Mary to have the drink. Mary finishes the drink and eats the strawberry with no untoward effects.
The nurse tells Mary she does not want to be involved and leaves the room. Mary manages to drink most of the magnum, becomes unwell, disorientated, gets out of bed, and slips on a strawberry breaking her hip, and she subsequently dies.
This scenario and the response to the different outcomes requires examining the steps in the process from 1) identifying to 2) communicating to 3) documenting to 4) enacting to 5) reviewing and reflecting on the choices and risk a person has the right to choose.
Proactive management of risk requires identifying the hazards associated with a resident’s choices that enhance their quality of life. Choice is defined as “an act or the possibility of choosing” 19 that is “to decide what you want from two or more things or possibilities”. 19
Many LTC residents are not provided with choices; instead, decisions are made for them. It is important not to assume that we know what a person wants. Identifying current choices requires asking and actively listening. Making assumptions based on previous experiences is not always valid. It is important to confirm each time a potentially hazardous activity is requested, that it is what the person wants.
Family members are often asked to make choices on behalf of a resident. This is not straightforward as they may have preconceptions that do not reflect their loved one’s wishes. Personal preferences may also change because of the new social setting or a worsening in functional status due to disease progression. The resident may also have private or secret personal habits or preferences that may not be known to family, or newly desired activities that may generate disapproval.
Risk is somewhat simplistically defined as “the possibility of something bad happening”. 20 This reflects the common usage of the term, but fails to recognize that some risk-taking is positive and beneficial. To better understand this requires examining the distinction between “risk” and “hazard”. A hazard is “something that is dangerous and likely to cause damage,” 21 eg, Mary wanting champagne and strawberries where the alcohol and the thin fluid or strawberry are the “hazard”, while the “risk” is the chance of harm occurring (becoming inebriated and slowing reflexes leading to a fall or aspirating on the fluid or choking on a strawberry).
Harm is an outcome that may result from taking or not taking a risk. The different types of harm include physical, psychological, financial, professional, reputational, and legal. Harm is caused in many different ways; most simply, it can be classified according to whether it occurred as a result of an omission or a commission. Generally, harm caused by commission is perceived or considered as “worse” than harm caused by omissions, 22 even where the outcome is the same. Harm can also be categorized according to whether an individual has “consented” to the harm, eg, choosing to take alcohol and bearing the consequences of any side effects (or legal repercussions), or whether the harm has been inflicted by an abuser (ie, without consent); for example, Mary’s grandson buys a case of 12 bottles of champagne with Mary’s money for his own personal use (financial abuse).
Harm is a necessary precursor for establishing abuse; however, not all harm occurs as a result of abuse. 23 If Mary wants to drink alcohol and unmodified food and consents to the risks associated, then any harmful consequences will not be as a result of abuse. Genuine consent to harm weighs against the likelihood of abuse. 24 Where there is no consent to harm to which another person has contributed, the presence of abuse may be indicated.
Risk management in health care is defined as “the basis of preventing and reducing harms …” 25 Haddon’s matrix provides an approach that examines the factors associated with the risk and how the risk can be eliminated or mitigated. 26 This may be a useful tool for identifying the potential consequences of a risk an LTC resident wishes to take, and how these consequences may be mitigated. A risk management matrix provides a similarly useful tool to examine the types of harm that may result from an activity and the likelihood of that harm occurring. 8 This is useful for generating an informed discussion toward determining which risks are considered acceptable and in supporting safer risk-taking.
Basic risk management approaches may be applied to the LTC setting, the Australian/New Zealand Standards 27 provide the following framework:
Identifying the context. Identifying the risk, its sources, and potential consequences.Analyzing the risk: considering causes/sources of risk; their positive and negative consequences; the likelihood that these consequences will occur; and what might alter the likelihood of consequences eventuating.
Evaluating the risk. Managing or “treating” the risk. Monitoring and reviewing the risk.The approach to risk management is influenced by the perception of risk; this depends on an individual’s personality, knowledge, and personal experiences. Perception of risk tends to become heightened after exposure to a hazard that has led to an adverse outcome. 10
A human rights approach to risk management may also be useful in LTC – a breach of human rights should be considered a risk in and of itself. 28 Human rights are based upon the principles of dignity, equality, and freedom; 29 arguably, if residents in LTC do not have the opportunity to enact choice and take risk, they are denied these basic rights and this may cause greater harm than the risk itself.
It is important for individuals to make an informed choice – they should be provided with all available options and the potential consequences before making a decision. Older people, especially those in LTC, are at a greater risk of harm as a consequence of their physical frailty, presence of multiple comorbidities, complex drug regimens, and the need for care coordination. It is unreasonable to expect this population to also be able to articulate the available risk management strategies. It is incumbent on family, staff, and society to provide the support to mitigate risk. It is implausible to eliminate all risk as doing so impinges on an individual’s autonomy. Speculating or forecasting potential consequences is important to ensure that staff can devise mitigation strategies and “rescue plans” to minimize the chance of harm following an adverse event.
Communication around choice, risk, and harm is complex. It is necessary to actively consider the purpose of communication and the nature of the parties involved. Communication about DoR choices are required as a minimum between 1) resident and family, 2) resident and staff, 3) incoming and outgoing shift staff, 4) internal LTC staff and any external health professionals responsible for the resident, and 5) resident and staff and management and staff.
Communicating effectively with a person with cognitive impairment is imperative in the equitable enactment of DoR in the LTC setting. Some relevant considerations proposed by Young and Manthorp 30 for communicating with a person with cognitive impairment include communicating in a suitable environment, body language, eye contact, empathy, listening, clarity, reducing anxiety, reinforcing concept, and checking understanding. It is important to consider not only how we communicate with residents, but also ensuring that we actively listen to residents. Without listening to what the resident wants, we cannot help them to enact genuine choices.
People are deemed to have capacity at 18 years of age; 31 this is accepted as the right to make decisions for yourself and does not consider whether the decision is right or wrong, sensible or foolish, healthy or unhealthy, and so forth. It does not also consider that individuals have differing levels of maturity and ability – capacity is arbitrarily assigned with age. Older people have the same rights even though they may have impaired cognition. How decisions are made in the setting of cognitive impairment needs to be more carefully considered – the process of decision-making is important.
Under the Powers of Attorneys Act 2014 (Vic), a person has the capacity to make a decision about a matter if they are able to “understand the information relevant to the decision and the effect of the decision… use or weigh that information as part of the process of making the decision and communicate the decision …” 32 , 33
If there are any concerns, capacity must be assessed according to the jurisdiction’s laws and by appropriately qualified health and legal professionals – it is not a matter of staff/family opinion. It is critical to understand that impaired capacity to make one type of decision does not preclude capacity to make a decision about a different matter – capacity is decision-specific. 34 In some circumstances where capacity is impaired, a guardian or power of attorney may be appointed as a substitute decision-maker. 35
The intricacies of the notion of capacity require multiple discussions and are perhaps best approached by a multidisciplinary team with the resident and family in a formal meeting to ensure everyone contributes their opinion and arrive at the same understanding of any decision. These types of meetings will be very familiar in LTC settings. The models and principles used in discussing end-of-life care 36 , 37 are worthy of consideration in the LTC setting. It is impractical to conduct such meetings whenever a decision is made. Meetings could be conducted at agreed intervals to discuss “everyday” choices involving risk (eg, every 6 months). It may also be timely to hold meetings when a resident wishes to undertake a “special activity” or if the resident’s cognitive ability has significantly declined. Ultimately, it is up to the LTC facility, staff, family, and resident to determine the regularity of such meetings.
Key aspects to address within multidisciplinary team meetings are as follows:
What is the choice being made? It is helpful to have a reason for the choice as it may assist others to accept the decision; however, it is essential to remember that a person does not need to explain or justify their choice.
What are the potential consequences of this choice? What are different stakeholders views and why? Is a mitigation strategy possible? How will this be initiated?Who will enact the choice? If another person is required who should this be and how does it alter the conditions around the choice?