2.1.1 TERMINOLOGY
Table 1. Long-term care facility types, their examples in Finland and characteristics (Noro and Finne-Soveri 2008; Sanford et al. 2015).
Long-term care facilities (LTCFs) International
terms
Nursing home Assisted living facility Finnish terms
and facilities
Residential care home, health center wards
Sheltered housing with 24-hour assistance, care home Characteristics Medically oriented care Socially oriented housing
Organizers Municipalities For-profit companies, third sector, municipalities
Internationally, facilities providing institutional care for frail older people with disabilities and cognitive decline have many forms and many different names.
“Nursing home” (NH) is a term extensively used in the United States for facilities that provide 24-hour functional support for residents and offer varying amounts of medical or rehabilitation services. Internationally, NHs also have short-term residents coming from hospitals for rehabilitation and aiming to continue living at home (Sanford et al. 2015). Assisted living facilities (ALFs) and Care Homes refer to smaller units, often with a lower level of medical services and more home-like environments, catering, for example residents with dementia and behavioral problems. “LTCF” is an umbrella term encompassing most facilities and often synonymous with NH, but they only include facilities with long-term residents (Sanford et al. 2015). See Table 1.
In this thesis uses the term LTCF is used to refer to all facilities that provide permanent 24/7 accommodation and functional assistance in ADL for older adults, with nursing and medical support provided on-site or externally to the setting (Reitinger et al. 2013).
17
2.1.2 ORGANIZATION OF INSTITUTIONAL SERVICES FOR OLDER ADULTS IN FINLAND
Over the past few decades the service structure of long-term care (LTC) has changed dramatically in Finland. Previously, institutional LTC was offered in health center wards and in NHs (also referred to as residential homes in Finnish literature). These services were mainly organized by local municipalities with limited for-profit or third sector involvement. However, they were considered institutional as living settings and the related costs of the care were high (Johansson 2010).
Figure 1 Levels of long-term care for older adults in Finland (Noro and Finne-Soveri 2008).
This has led to two developments over the past few decades: 1) promotion and resourcing of home care, allowing for many of the people who would previously be institutionalized to continue living at home; 2) health center wards no longer providing LTC and being replaced by sheltered housing with 24-hour assistance (Noro and Finne-Soveri 2008; Vuorenkoski et al. 2008).
Sheltered housing units resemble what are internationally referred to as assisted living facilities (ALFs) and they are referred to as ALFs in this thesis.
During the last two decades around 8% of people aged over 75 years have been living in a LTCF. However, when in 2000, only 10% of these LTC services were provided by ALFs, this proportion increased to 89% of residents by 2018 (THL 2020). The role of health center wards providing long-term care (length of stay over three months) has diminished rapidly, these facilities now providing 2%
of all long-term care. The remaining 9% of long-term care is carried out in nursing homes (THL 2020). ALFs are social housing services, in contrast to health center wards that are essentially primary care hospitals. ALFs are more home-like and were originally designed for people with less intensive medical
18
needs compared with NHs. Their staffing profile also differs from those in NHs and in health center wards. Because ALFs are organized by social services, they are not categorized as institutional care in the Finnish care system (Johansson 2010); see Figure 1.
LTCFs in Finland are led by registered nurses, while physicians act mainly in a consulting role. Most direct care in Finnish facilities is provided by licensed practical nurses who are required to have two to three years of nursing education. In many European countries the front-line staff are referred to as health care assistants with varying requirements for licensing and a minimum training requirements of only three months (Smets et al. 2018; Schäfer et al.
2019). Traditionally, most NHs and health center wards are run by the public sector (municipalities). However, in Finland around 50% of ALFs were run by for-profit organizations in 2019 (THL 2020).
Specialized hospice units are infrequent providers of palliative care in the Finnish health care system and they mainly serve younger, previously home-dwelling patients. Palliative care needs among LTCF residents are met in, and by, the residents’ own facility (Saarto 2017). This is also in line with recent national recommendations, in which palliative care is provided in three levels (Saarto and Finne-Soveri 2019). A basic level of palliative care should be available in all units of health and social services that provide 24-hour service.
In Finland, short-term external assistance in palliative care is often delivered to facilities via hospital-at-home services. Specialized palliative care should be provided by regional specialized units and they should co-ordinate care in their region. Demanding specialized palliative care services are provided by the five university hospitals in Finland (Saarto and Finne-Soveri 2019).
2.1.3 RESIDENT CHARACTERISTICS
During the last few decades there have been substantial changes in the population admitted to LTCFs, due both to policies enhancing home-care, and increasing life-expectancy. Also, in Finland, many of the frail older adults with multimorbidities and functional dependency are now cared for at their own homes (Forma et al. 2017). For example, the residents in the LTCFs in Helsinki had more disabilities and suffered more often from dementia in 2017 compared with residents 10—14 years previously (Roitto et al. 2019). With increasing life-expectancy, neurodegenerative disorders such as dementias are becoming more common worldwide (WHO 2017). Most new residents in Finnish LTCFs now have significant cognitive difficulties and they are predominantly female (Roitto et al. 2019). Both in Finland and internationally, the estimated prevalence of severe cognitive decline among residents is over 70% (Finne-Soveri et al. 2015; Björk et al. 2016; Van den Block et al. 2019).
For an older person, the main predictors of residency in a LTCF are known to be older age and dementia (Aaltonen et al. 2019).
Such residents are experiencing functional decline at the time of admission, and for many this is a sign of approaching death. Around one third of newly
19
admitted residents die during the first year after admission and average survival is around two years (McCann et al. 2009; Knaul et al. 2018; Vossius et al. 2018). According to a Finnish study, of people over 70 years, around 50%
spend some time admitted to a LTCF during their last year of life (Forma et al.
2017).
The frail state of the residents makes them susceptible to worsening of their condition as a result of many factors such as pneumonia, urethral tract infections, falls and delirium (Mitchell et al. 2009). These in turn lead to the frequent hospital admissions experienced by many of the residents.
Hospitalizations of LTCF residents appear to be most common during their last months of life (Abarshi et al. 2010; Gozalo et al. 2011; Aaltonen et al. 2014).
2.1.4 DISEASE TRAJECTORIES OF LONG-TERM CARE FACILITY RESIDENTS
About half of Europeans die over the age of 80. Dying in old age is characterized by a gradual decline before death as a results of chronic illnesses.
Such conditions include cardiovascular diseases, malignancies and, increasingly, dementias. This gradual decline pathway is present among two thirds of older people, while for one third death is a more sudden event (van der Heide et al. 2003). For many non-malignant illnesses with slow trajectories, anticipating when death will occur is challenging. Of note, a study in the UK showed that half of the people with cancer knew they were dying, but only 20% of people with other terminal conditions were aware of the prognosis of their disease (Seale and Kelly 1997). While different cancers have long been considered to be life-limiting diseases, the trajectories of dementias have been less well understood. The progressive impairment in function is well understood, but the progression of the disease is more stepwise compared with other terminal diseases with long stable periods of moderate to severe disability (Lunney et al. 2003; Gill et al. 2010). As most palliative care tools and approaches have been developed from a cancer care starting point, they might have limited applicability for LTC residents (Kearns et al. 2017;
Collingridge Moore et al. 2020).
Specialist palliative care related to different types of cancer has a tradition of care development and research interest that is not found in connection with other types of EOL care needs (Miller et al. 2001). Recently, there has been increasing activity related to EOL care provided in LTCFs (Collingridge Moore et al. 2020). It has been noted that these facilities provide EOL care for a large proportion of older people. These people typically have diseases whose terminal nature is poorly acknowledged, such as dementias, heart failure and chronic obstructive pulmonary disease. However, LTCF residents are underserved by both basic palliative care and specialist services. Specific barriers related to delivering EOL care in a LTCF context include low education levels, rapid staff turnover, financial pressure and organizational
20
boundaries, including the absence of palliative specialist service involvement in care (Collingridge Moore et al. 2020).
Prognostication for LTCF residents is difficult (Lee and Chodosh 2009; van der Steen et al. 2011). Thus, determining the proper time for a palliative approach has been considered problematic (Coventry et al. 2005). Poor acknowledgement of approaching death and EOL care needs of residents are probable causes of inadequate advance care planning (ACP). This is likely to affect the quality of care in an EOL context.