Nursing care needs and services utilised by home-dwelling elderly with complex health problems: observational study

Frail older people who receive health care in their home often have needs for comprehensive health care [1]. Many suffer from an unstable health characterized by several chronic diseases, functional impairments and polypharmacy [2]. They are at high risk for developing additional functional decline, and may be particularly good candidates for preventive and early interventions [3]. In this patient group, symptoms of new diseases or worsening of existing diseases may be vague and uncharacteristic. However, prompt diagnosis and treatment of acute or subacute changes in health state, combined with adequate rehabilitation measures may prevent further functional decline and hospitalization [4‐7], and give long-term benefits by maintaining the care recipients’ functional status and quality of life [8‐10]. In a recent review, Philip and co-workers reported that many hospital-based as well as community-based interventions developed may prevent hospital admittance of frail elderly persons [11].

Despite the fact that patients most of the time receive treatment and care in the communities, there is limited research data regarding the needs and follow-up care of older patients living at home. Community care is becoming increasingly important across a number of countries, and one of its aims is to prevent unnecessary hospital admissions [12]. In Norway, hospitals are run by the national government and nursing homes and home care services by the municipalities or by private companies working on a contract with the municipality. This “two-track system”, in combination with shortage of hospital beds, constitutes an incitement for hospitals to discharge patients early, pushing more responsibility for frail patients on the local communities. The Coordination Reform, implemented from 2012, transfers responsibility from hospitals to the municipal health and care services. Many of the municipalities, including the capital of Oslo have been organised with one authority responsible for ordering services and another responsible for providing them. A list system ensures all inhabitants their own general practitioner (GP). The list holding GPs have a contract with their municipality and most practices are organized as independent enterprises with a combination of public funding and fee for service. The Research Council of Norway, on assignment for the Ministry of Health and Care Services, have completed an evaluation of the health and care services after implementation of the Norwegian Coordination Reform. The evaluation reveals that there is a lack of knowledge and evidence-based guidelines for older patients with multimorbidity. This is a large patient group with extensive need of healthcare ([13], p. 51). Internationally, frequent readmissions are common in frail, home-dwelling elderly, and may also represent a burden and a risk factor for further functional decline [14]. In order to tailor the community care services to the needs of frail patients, precise knowledge about their health and functional status is needed. Little is known, however, about the functional characteristics and trajectories of seniors receiving nursing care in their own home, their needs for qualified health care, and how these needs are met. Better knowledge on this is a prerequisite for improving the services when necessary.

Cognitive dysfunction, sarcopenia, impaired mobility, dependency in activities of daily living (ADL), multimorbidity and polypharmacy are core elements of frailty [15]. Frailty is a major risk factor for rapid health deterioration and poor health outcomes. Thus identifying frailty among older individuals is essential to initiate preventive and health promoting measures as early as possible [16]. Indicators reflecting these core elements are therefore helpful in targeting seniors in need of intensified surveillance and multiprofessional follow-up.

Accordingly, the aim of this study was to describe the needs for nursing assessment and care in a Norwegian cohort of frail, home-dwelling elderly persons receiving home care, and to evaluate whether the currently provided nursing care adequately addressed their needs.

Among the home nursing clients in the three districts a total of 150 eligible patients were identified. Of these, 83 gave informed consent and were included. During the next eight months, further 22 patients dropped out, leaving 61 patients for the follow-up assessment (Fig. 1). Descriptive statistics are provided in Table 1. At baseline, the patients were on average 87 years, three in four were women, and nearly four in five lived alone. They had more than five diagnoses requiring active treatment and used nearly nine daily medications. Most conditions were related to cardiovascular disease. Non-cardiovascular conditions such as osteoarthritis, osteoporosis and fractures were also common, and often resulted in pain as a major health problem. A high fraction of the patients had ADL limitations. 60% of the patients did not themselves know which medications they used.

At baseline, 61 of 81 patients (75%) had a grip strength indicating sarcopenia, increasing to of 50 of 61 (82%) at follow up. Regarding mobility, 27/83 patients (33%) were impaired at baseline and 26/61 (43%) at follow up, whereas the fraction of patients with a TMT-A score indicating impaired attention and/or reduced psychomotor function remained stable (69/83 [83%] at baseline versus 51/61 [84%] at follow-up).

Median amount of home nursing per week according to the formal decisions was 3.6 h (interquartile range 2.6 to 23.4). That is, 31 min a day, most often distributed in two or three visits. Services provided by the community are summarised in Table 2. The most common nursing services were assistance with medications (nearly all patients) and personal hygiene (four in five), followed by specific nursing tasks (such as care of urinary catheter, stoma care, bladder irrigation, blood glucose testing). Help with medications was regularly defined in the patient records as “delivering prescribed medications to the patient”, but observation of effects or adverse effects were not noted. Most of the patients got their medication by a multidose drug dispensing system, and in these cases information regarding the indication for the different drugs was rarely available in the nursing documentation system. More than half the patients were found to be in need of a personal body worn security alarm due to an increased risk of falling, but less than one in ten received physiotherapy and/or occupational therapy. Needs for rehabilitation interventions to strengthen self-care or to prevent falls were not reported in any of the patient records. Help with compression stockings was explicitly limited to assisting in taking the stockings on and off, not including assessment of oedema, skin changes or possibly related pain.

Table 3 displays the most common chronic conditions the patients suffered from, the main groups of medication used, and the number of patients with the various functional limitations that were evaluated. For each disorder, drug class or functional limitation, the table also displays regular nursing interventions or observations needed for the condition according to the expert panel, and the number of patients with the particular condition that actually had received the recommended intervention. Fulfilment of needs was high for skin and wound care, observation of blood glucose in patients on antidiabetics, and in supporting food intake in those with eating difficulties, but a vast majority of the defined needs identified by the expert panel was fulfilled in less than one in ten patients.

The patients showed a pronounced degree of frailty; more than one in three had severe limitations in mobility, eating and/or other ADL tasks, and more than seven out of ten exhibited impairments in psychomotor tempo, muscle function and/or focused attention. To our knowledge, frailty indicators in a population based sample of home-dwelling seniors receiving municipal services have not been studied in so much details before, though existing results accord with ours [2]. Although we aimed at including the most vulnerable home-dwelling elderly, as we had multimorbidity, daily home care and recent hospitalisation as inclusion criteria, for ethical reasons we had to exclude those who were terminally ill and those with too severe dementia as to be able to give a valid informed consent. The degree of observed frailty was nevertheless more pronounced than could be expected. Our findings emphasise a need for qualified observations and individually tailored pro-active treatment adjustments in order to maintain patients’ best possible health and function.

The level of frailty identified in this population may partly be explained by the Care Coordination Reform (CCR), which was implemented in Norway from 2012. The CCR gives the municipalities a greater responsibility for frail and sick elderly persons, and implies that services shall be provided in the people’s homes for as long as possible before moving the patient to a higher level of care. The reform also presupposes more individualized patient care and follow-up, demanding greater staff and budgetary resources allotted to the local authorities [21]. The reform has been successful in reducing the number of patients waiting in hospitals for available municipal care. However, this improvement may have been achieved on the cost of patients waiting longer at home for short as well as long term nursing home care [12]. As nursing home beds become an increasingly scarce resource, also in high-income Scandinavian countries, a growing percentage of very frail elderly persons will have to stay in their own homes and there be dependent on health care services from the municipality. Their frailty, multimorbidity and medical treatment indicate a need of qualified nursing interventions and cooperation with the general practitioner (GP) in addition to help with ADL. The degree of frailty and complexity found in our included patients raises the question whether these services are utilized in the most effective way as to cope with the increasing demands.

That the patients’ conditions deteriorated further over the eight month observation period, particularly with respect to mobility, is in line with results reported by others [22]. Recent interventional studies indicate that home based rehabilitation can be effective in home-dwelling elderly persons with functional impairments [23], but such measures seemed to be under-utilized in the districts we studied. Promising results also exist from interventions aimed at improved cooperation between hospitals and primary health care [10] and in identifying patients at particular risk of hospital readmittance [14]. In our opinion, a reasonable next step for model development studies should be to redirect the content of the routine health services provided at home more towards tailored observations of disease status, functional status, and drug effects in combination with rehabilitation, and with the health service input being flexible and open for day-to-day individualization as deemed appropriate by the health personnel themselves. Firm evidence for the effectiveness of such an approach is limited, but there are reasons to believe that it may be effective [24‐28].

Despite the degree of frailty and the obvious need for qualified services, we found a marked discrepancy between the health services the patients received, and what the consensus group deemed necessary. The necessary health services recommended by the panel were all well within the competence base of skilled nursing practice. As pointed out by Olde-Rikkert and co-workers [29], nurses should have a key position in the day to day monitoring of the health state in frail patients, and in communicating with the GP when necessary. However, our results suggest that nurses only to a limited degree had been requested to provide assessments and evaluations in accordance with their professional competence, for example to pay particular attention to possible adverse drug effects, signs of uncontrolled symptoms, and potentially avoidable disease progression.

Based on the medication lists, many of the patients probably had heart failure, pain, constipation, sleeping problems or anxiety, but we did not find documentation in the home nurses’ patient record system describing the course of the health problems, or that effects of their pharmacological treatment had been systematically evaluated. Several patients used opioid analgesics, anxiolytics or hypnotic drugs posing a high risk of delirium, falls and gastrointestinal problems. It is likely that if the nurses to a larger degree were given the time, competence and opportunity to monitor important health indicators and coordinate medical follow-up when necessary, health and function of this frail patient group might be better maintained and hospitalisations avoided [14, 30]. This would, however, require an organisational model in which the nurses were authorized to adapt the services to the patients’ varying health needs from day to day, and were not bound to follow detailed service descriptions and schedules. Moreover, the nurses should collaborate closer with the patients’ GPs and have easy access to information on the patients’ actual diagnoses, the medication, and the indication for each drug given. It has earlier been pointed out that the multidose drug dispensing system, which is now being widely used in Norway as well as several other countries, seems to weaken each nurse’s responsibility for professional evaluations of the medication and its effect [31].

The patients’ complex health problems indicate that they are in need of specialised nursing competence. In particular, nurses caring for this group of patients should be trained in assessing nutrition, drug related problems, pain, ADL impairments and related problems. The training of home nurses in such issues seems to be insufficient in Norway [32, 33] as well as abroad [34], and continuity of care too fragmented to address such issues satisfactorily [35].

One might argue that the consensus group has been too comprehensive in defining the patients’ health care needs emerging from their diagnoses, medication and functional limitations. However, we aimed at a conservative approach in the consensus process, securing that interventions were only listed as necessary if all panellist agreed upon them. Moreover we aimed at identifying conditions that necessitated nursing interventions beyond assisting in ADL. Consequently, we will argue that the interventions listed constitute a minimum of what would be necessary to avoid preventable disease deterioration, functional decline and hospital readmittance.

Another objection might be that we have under-estimated the quality of the services that was in fact provided. An obvious weakness of our study is that we did not objectively record what was done in each individual encounter between patient and nurse. However, also for this question we used an approach actively favouring the present situation. If an issue was at all mentioned in the decision or the case notes, it was recorded as “done”. As health personnel working in the municipalities are instructed to comply ever closer to the formal decisions and the pre-specified time to carry them out, and at the same time ever more emphasis is put on documentation of what has been done on each patient encounter, we find it very unlikely that the needs we have formulated have been fulfilled to any substantial degree more than documented in the patients’ records.

A weakness of our study is the limited number of participants. However, to our knowledge, few if any other studies have recorded a comparable set of clinical data on a patient sample with comparable degree of frailty and functional and cognitive impairment. Moreover, a strength is the repeated assessment with validated and widely used functional instruments in combination with detailed information on disease state and medication use. We also consider the consensus panel approach to be a strength, enabling us to establish a reference standard for evaluation of the services provided.

In conclusion, home dwelling elderly with multimorbidity who have been hospitalized the last year constitute a very frail group, and are prone to further functional deterioration. The patient group’s very diverse health care needs and unstable clinical condition suggest that for this group, resources for home based health care in the home should be used in a more flexible and pro-active way, aiming to prevent further functional decline and unnecessary hospitalization, and improve the patients’ symptom burden.