Effects of staff training on end-of-life care in long-term care facilities

(1)

1

Department of General Practice and Primary Health Care Faculty of Medicine

University of Helsinki

EFFECTS OF STAFF TRAINING ON

END-OF-LIFE CARE IN LONG-TERM CARE FACILITIES

Pauli Lamppu

DOCTORAL DISSERTATION

To be presented, with the permission of the Faculty of Medicine of the University of Helsinki, in Hall 107, Athena Building, Siltavuorenpenger 3 A,

on February 8 2022, at 1 pm Helsinki 2022

(2)

2

Dissertationes Scholae Doctoralis Ad Sanitatem Investigandam Universitatis Helsinkiensis

Department of General Practice and Primary Health Care Doctoral Programme in Population Health

Supervisors

Professor (emerita) Kaisu Pitkälä, MD, PhD

University of Helsinki, Department of General Practice and Primary Health Care, Helsinki, Finland

Professor Jouko Laurila, MD, PhD

University of Oulu, Center for Life-Course Health Research, Oulu, Finland Docent Marja-Liisa Laakkonen, MD, PhD

Department of Social Services and Health Care, Helsinki Hospital, Geriatric Clinic, Helsinki, Finland

Reviewers

Docent Reino Pöyhiä, MD, PhD

University of Eastern Finland, Institute of Clinical Medicine, Department of Anaesthesia, Kuopio, Finland

Professor Juho Lehto, MD, PhD

University of Tampere, Faculty of Medicine and Life Sciences, Tampere, Finland

Opponent

Professor Anette Hylen Ranhoff, MD, PhD

University of Bergen, Department of clinical science, Bergen, Norway Cover painting

Kristo Saarikoski: “Siirtymä (Transition)”, oil on canvas

The Faculty of Medicine uses the Ouriginal system (plagiarism recognition) to examine all doctoral dissertations.

ISSN 2342-3161 (print) and ISSN 2342-317X (online)

ISBN 978-951-51-7839-8 (print) and ISBN 978-951-51-7840-4 (online) Unigrafia, 2022

(3)

3

ABSTRACT

Background: Older people residing in long-term care facilities (LTCFs) are known to have unmet needs in end-of-life (EOL) and palliative care. Their care can be improved through better advance care planning and by setting appropriate goals for care. In addition, providing facilities with adequate skills and resources helps in managing acute condition changes and meeting the palliative care needs of the residents without hospitalizations, which are known to be burdensome for this frail population.

Objectives: The purpose of this study was to examine the efficacy of staff training on LTCF residents’ EOL care outcomes. The study comprises four published sub-studies. In Study I, we systematically reviewed previous randomized trials examining the effectiveness of various interventions including staff education on residents’ EOL outcomes. Studies II–IV present a novel form of educational intervention to train staff members in key aspects of EOL care over four afternoons. This intervention was tested in a cluster- randomized controlled trial (RCT) in Helsinki in 2018 – 2020.

Participants: Study I was a systematic literature review. This review included database searches of MEDLINE, CINAHL, PsycINFO, the Cochrane Library, Scopus, and Google Scholar, as well as study of references in key articles, previous reviews, and recent volumes of relevant journals. The review presents a narrative summary of 16 RCTs meeting the inclusion criteria. The studies involved between 72 and 23 478 resident participants per trial and overall they provided data on 40 712 LTCF residents. The RCT presented in Studies II–IV involved 324 residents and 132 staff members from municipally run LTCFs. The participating residents were randomized in facility-clusters to intervention and control groups.

Intervention: In the RCT, a training intervention was offered to all staff members of the facilities in the intervention group. The training intervention included four educational workshops (four hours each) on palliative care principles. Training contents included: advance care planning, adverse effects of hospitalization, symptom management, communication, supporting proxies, and challenging situations. Educational sessions were based on constructive adult learning methods and included a plentitude of resident cases, role-plays, and small-group discussions.

Measures: Resident-level outcomes were targeted in all sub-studies.

Reported measures of quality of life (QoL), Quality of dying (QoD) or hospitalizations were required for all studies included in the systematic review. In the RCT, health-related QoL (using the 15D instrument) and hospital inpatient days during a two-year follow-up were taken as primary outcomes. Additionally, for a period of one year, residents’ symptoms, pain, psychological well-being, and proxies’ satisfaction with care were assessed.

Intervention feedback results from trainees are reported in Study II.

(8)

8

Results: Study I revealed that previous randomized trials had mainly failed to produce benefits to residents. Low to moderate levels of evidence suggest that promoting advance care planning, increasing relatives’

involvement in decision-making and providing facilities with external palliative care expertise may improve QoD and reduce hospitalizations. In the RCT, QoL declined in both groups during follow-up, and no difference was observed in changes between the groups. Neither the number of hospital inpatient days (1.87 vs. 0.81 per person-year) nor the number of emergency department visits differed between the intervention and control groups. Total hospital expenditure was similar in the intervention and control groups. The change in ESAS symptom scores from baseline to six months favored the intervention group. However, the finding was not maintained later at 12 months. Pain, psychological well-being and proxies’ satisfaction with care were unaffected by the intervention. All follow-up analyses were adjusted for age, gender, do-not-resuscitate order, need for help, and clustering.

To conclude, the current evidence can only support rather specific interventions targeting resident-level EOL outcomes in LTCFs. Unsupported educational interventions might be insufficient in affecting meaningful resident outcomes.

(9)

9

TIIVISTELMÄ (ABSTRACT IN FINNISH)

Taustaa: Palveluasumisyksiksiköissä asuvien iäkkäiden elämän loppuvaiheen hoidossa tiedetään olevan puutteita. Palliatiivista ja elämän loppuvaiheen hoitoa voidaan parantaa mm. elämän loppuvaiheen ennakoivalla hoitosuunnitelmalla ja yksilöllisellä asukkaiden hoidon tavoitteiden selkeyttämisellä. On myös tärkeää varmistaa yksiköiden riittävä resursointi ja osaaminen. Riittävät valmiudet asukkaiden terveydentilan tavallisimpien muutosten hoitamiseen sekä palliatiivisen ja saattohoidon tarjoaminen asukkaan omassa asuinpaikassa ilman kuormittavia sairaalasiirtoja kuuluvat ikäihmisten hyvään pitkäaikaishoitoon.

Tavoitteet: Tässä tutkimuksessa selvitettiin pitkäaikaishoitoyksiköiden työntekijöiden kouluttamisen vaikutuksia asukkaiden elämän loppuvaiheen hoitoon. Tutkimukseen kuuluu neljä osatyötä. Näistä Osatyö I oli systemaattinen katsaus, jossa selvitettiin erilaisten hoitohenkilökunnan koulutusta sisältäneiden tutkimusinterventioiden vaikuttavuutta asukkaiden elämän loppuvaiheen hoidon päätetapahtumiin aiempien satunnaistettujen vertailututkimusten (randomized controlled trial, RCT) perusteella. Osatöissä II-IV esitellään uusi neljä iltapäivää kestävä yksiköiden työntekijöille suunnattu elämän loppuvaiheen hoitoa käsitellyt koulutusinterventio.

Koulutusinterventiota tutkittiin RCT tutkimusasetelmassa helsinkiläisissä pitkäaikaishoidon yksiköissä vuosina 2018 – 2020.

Aineisto ja osallistujat: Osatyö I oli kirjallisuuskatsaus, jonka systemaattiseen kirjallisuushakuun sisällytettiin keskeiset tutkimusalan tietokannat (MEDLINE, CINAHL, PsycINFO, the Cochrane Library, Scopus, ja Google Scholar) sekä keskeisten artikkeleiden, keskeisten alan julkaisusarjojen ja aiempien systemaattisten katsausten viiteluettelot.

Systemoituun kirjallisuuskatsauksen valittiin sisäänottokriteerien mukaisesti 16 aiempaa RCT tutkimusta, joiden tuloksista koottiin yhteenveto ilman meta- analyysiä. Yksittäisissä tutkimuksissa osallistuneiden asukkaiden määrä vaihteli 72 ja 23 478 välillä. Kaikkiaan katsauksen tutkimuksissa oli mukana 40 712 pitkäaikaishoidon asukasta. Osatöissä II–IV oli mukana seurattavana 324 asukkaan, ja koulutettavana 132 työntekijän joukko Helsingin kaupungin hallinnoimista pitkäaikaisyksiköistä. Asukkaat ja työntekijät satunnaistettiin tutkimuksessa osastoihinsa ryvästetysti interventio- ja kontrolliryhmiin.

Interventio: RCT tutkimuksessa (Osatyöt II–IV) tarjottiin koulutustilaisuuksia kaikille interventioryhmään kuuluvien yksiköiden työntekijöille. Neljä tuntia neljänä iltapäivänä kestänyt koulutus käsitteli elämän loppuvaiheen hoidon keskeisiä elementtejä, kuten elämän loppuvaiheen ennakoivaa hoitosuunnittelua, sairaalasiirtojen haittoja asukkaille, oireiden hoitoa, vuorovaikutusta, omaisten tukemista ja haastavia tilanteita elämän loppuvaiheen hoidossa. Koulutusintervention pedagoginen lähestymistapa oli rakennettu konstruktivistisen aikuispedagogiikan

(10)

10

moderneille käytännöille ja koulutuksessa hyödynnettiin runsaasti potilastapauksia, rooliharjoituksia ja pienryhmäkeskusteluja.

Tulosmuuttujat: Kaikki osatutkimukset keskittyivät asukastason tulosmuuttujiin. Systemaattisessa katsauksessa (Osatyö I) katsaukseen sisällytettiin vain tutkimuksia joissa raportoitiin asukkaiden intervention jälkeistä elämänlaatua, elämän viimeisten vaiheiden laatua, tai asukkaiden sairaalapalveluiden käyttöä. Kontrolloidussa tutkimuksessa (Osatyöt II–IV) päätulosmuuttujina seurattiin asukkaiden terveyteen liittyvää elämänlaatua 15D-mittarilla sekä sairaalapalveluita kahden vuoden ajan. Lisäksi muina tulosmuuttujina seurattiin vuoden ajan asukkaiden oireisuutta, kivun määrää, psykologista hyvinvointia ja omaisten tyytyväisyyttä hoitoon. Osatyössä II raportoidaan myös interventioryhmän koulutuksiin osallistuneiden työntekijöiden arvioita koulutuksesta.

Tulokset: Osatyön I perusteella aiemmat perusteellisesti testatut koulutusinterventiot eivät pääsääntöisesti ole pystyneet vaikuttamaan asukkaiden elämän loppuvaiheen laatuun. Katsauksen perusteella heikko tai kohtalainen näyttö tukee ennakoivan hoitosuunnittelun edistämisen ja palliatiivisen erityisosaamisen yksiköihin jalkauttamisen positiivisia vaikutuksia asukkaiden elämän loppuvaiheen laatuun ja sairaalasiirtojen vähenemiseen. Osatöiden II–IV koulutusintervention jälkeen terveyteen liittyvä elämänlaatu heikkeni molemmissa tutkimusryhmissä eikä muutoksissa ollut eroa ryhmien välillä. Sairaalahoitopäivissä (1.87 vs. 0.81 henkilövuotta kohden) tai päivystyskäyntien määrässä ei myöskään ollut tilastollisesti merkittävää eroa, kuten ei myöskään sairaalatasoisen hoidon kustannuksissa ryhmien välillä. ESAS oirearvioissa interventioryhmällä havaittiin 6 kk kohdalla merkittävästi suurempi oireiden lievittyminen kontrolliryhmään verrattuna. Tätä intervention mahdollista vaikutusta ei kuitenkaan nähty enää myöhemmissä mittauksissa vuoden kohdalla. Kivun, psyykkisen hyvinvoinnin tai omaisten tyytyväisyyden suhteen ei koulutusinterventiolla havaittu olleen vaikutusta. Kaikki ryhmien väliset seuranta-analyysit tehtiin tilastollisella mallilla, jossa vakioitiin asukkaiden ryvästys, ikä, sukupuoli, elvytyskiellon olemassaolo, sekä avuntarve päivittäisissä toimissa.

Tutkimusaineiston perusteella tämänhetkinen näyttö pitkäaikaishoidon asukkaiden elämän loppuvaiheen hoidon kehittämisestä tukee vain muutamia melko rajattuja interventiotyyppejä henkilöstön koulutuksen suhteen.

Yksinkertaisen, pelkästään henkilökunnan koulutukseen perustuvan intervention vaikutus asukkaiden elämän loppuvaiheen hoitoon vaikuttaa vähäiseltä.

(11)

11

ABBREVIATIONS

15D 15-dimensional health-related quality of life instrument

ACP Advance care planning

ACSH Ambulatory care sensitive hospitalization

AD Advance directive

ADL Activities of daily living ALF Assisted living facility

ATC Anatomic Therapeutic Chemical classification CAD-EOLD Comfort Assessment in Dying – End-Of-Life in

Dementia

CDR Clinical Dementia Rating

COPD Chronic obstructive pulmonary disease CRD Charlson Comorbidity Index

DNH Do-not-hospitalize

DNR Do-not-resuscitate

DS-DAT Discomfort Scale for Dementia of the Alzheimer’s Type

ED Emergency department

EOL End-of-life

EOLD End-Of-Life in Dementia

EQ-5D EuroQol 5D, a five dimensional QoL EQ-VAS EuroQol Visual Analogue Scale

ESAS Edmonton Symptom Assessment System FPCS The Family Perception of Care Score

HRQoL Health-related quality of life

HSP Hospitalization

HUI Health Utilities Index IRR Incidence rate ratio

LTC Long-term care

LTCF Long-term care facility

MDS Minimum Data Set

MMSE Mini-mental state examination MNA Mini Nutritional Assessment

NH Nursing home

NRS Numerical Rating Scale

PAH Potentially avoidable hospitalization PAINAD Pain Assessment in Advanced Dementia

PBL Problem-based learning

PWB Psychological well-being

QoC Quality of care

QoD Quality of dying

QOD-LTC Quality of Dying in Long-term Care QODD Quality of Death and Dying

QoL Quality of life

QUALID Quality of Life in Late-stage Dementia (scale)

(12)

12

QUALIDEM a dementia-specific QoL assessment instrument RAI Resident Assessment Instrument

RCT Randomized controlled trial

RN Registered nurse

SD Standard deviation

SM-EOLD Symptom Management – End-Of-Life in Dementia SWC-EOLD Satisfaction With Care – End-Of-Life in Dementia

VAS Visual Analogue Scale

WHO World Health Organization

(13)

13

LIST OF ORIGINAL PUBLICATIONS

This thesis is based on the following publications:

I Lamppu PJ, Pitkala KH. Staff Training Interventions to Improve End-of-Life Care of Nursing Home Residents: A Systematic Review. J Am Med Dir Assoc. 2021 Feb;22(2):268–78.

doi:10.1016/j.jamda.2020.09.

II Lamppu PJ, Laurila J, Finne-Soveri H, Laakkonen M-L, Kautiainen H, Pitkälä KH. Training nursing home staff to improve residents’ end-of-life care: design and baseline findings from a randomized controlled trial. Eur Geriatr Med. 2019;10(4):649- 657. doi:10.1007/s41999-019-00200-5

III Lamppu PJ, Finne-Soveri H, Kautiainen H, Laakkonen ML, Laurila JV, Pitkälä KH. Effects of Staff Training on Nursing Home Residents’ End-Of-Life Care: A Randomized Controlled Trial. J Am Med Dir Assoc. 2021;22(8):1699-1705.e1.

doi:10.1016/j.jamda.2021.05.019

IV Lamppu PJ, Laakkonen ML, Finne-Soveri H, Kautiainen H, Laurila JV, Pitkälä KH. Training Staff in Long-Term Care Facilities–Effects on Residents’ Symptoms, Psychological Well- Being, and Proxy Satisfaction. J Pain Symptom Manage. 2021 Oct 1;62(4):e4–12. doi:10.1016/j.jpainsymman.2021.03.020 The publications are referred to in the text by their Roman numerals. They are reprinted with permission of the publishers.

(14)

14

1 INTRODUCTION

Finland, along with many other western societies, is facing challenges related to the aging population (Rechel et al. 2013). Home care services are promoted to meet the increasing need of help in daily activities many older adults face.

This allows people to live in their homes much longer than previously. Thus, older adults taking up residence in long-term care facilities (LTFCs) are the most frail and functionally dependent people in society (Forma et al. 2017).

Internationally, LTCFs are also a common place of death, with an estimation that in the USA one in four older adults dies in a LTCF (Teno et al.

2013). Furthermore, of people with dementia, on average half die in these facilities (Teno et al. 2013). In Finland, health center wards are the most common place of death (over 50%) among older people. However, several changes in the service system, and in the care needs of older people are making LTCFs an increasingly common place of death in Finland as well (Jylha et al.

2015).

Awareness of the medical, psychosocial, and spiritual needs of LTCF residents arising from the reality of approaching death is increasing. Good quality end-of-life (EOL) care focuses on maintaining residents’ quality of life (QoL) as well as meeting families’ needs in this often upsetting transition. EOL care has been recommended to be strengthened in all care systems, both internationally and nationally (Radbruch and Payne 2009; World Health Assembly 2014; Saarto and Finne-Soveri 2019).

Studies have shown that EOL care in LTCFs is lacking as regards adequate symptom control. Furthermore, there are discrepancies between received and residents’ preferred care, and the use of facility and hospital resources is too often improper (Mills et al. 1994; SUPPORT 1995; Pivodic et al. 2018).

Additionally, residents’ proxies satisfaction with care — an important measure of care quality — has been found to be suboptimal (Teno et al. 2004; Arcand et al. 2009; Liu et al. 2012).

There are several reasons why EOL care in LTCFs can be inadequate. These include poor acknowledgement of the residents’ approaching death, large staff turnover, financial pressures and absence of palliative specialist involvement in care (Coventry et al. 2005; Collingridge Moore et al. 2020). Shortcomings in EOL care result in inappropriate symptom control and can also lead to iatrogenic harm (= harm caused by interventions) for residents, as burdensome hospitalizations are frequent close to death, especially when advance care planning has been inadequate (Gozalo et al. 2011; Dwyer et al.

2014).

Facility staffs’ skills, knowledge and attitudes are key components in organizing EOL care for residents. These aspects offer an obvious possibility for educational intervention. An increasing number of academic interventions and quality improvement projects have taken place during the last decade.

(15)

15

Commonly, these interventions feature several components, with training for facility staff being the most frequently used intervention component (Flo et al.

2016). However, the results of these interventions still leave many gaps in determining effective ways for care quality improvement.

The focus of this thesis is to examine the current evidence regarding the use of staff training interventions in improving residents’ EOL care outcomes, and to test the effectiveness of a feasible staff training intervention for the same goal.

(16)

16

2 REVIEW OF THE LITERATURE

2.1 CHARACTERISTICS OF LONG-TERM CARE FACILITIES AND RESIDENTS

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)

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)

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)

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)

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.

2.2 DEFINING END-OF-LIFE CARE, PALLIATIVE CARE AND HOSPICE CARE

According to the WHO definition: “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

(Sepúlveda et al. 2002). Most definitions have since the publication of this definition, some 20 years ago, followed along the same lines. The most recent consensus-based definition, developed using a Delphi method by members of the International Association for Hospice and Palliative Care (IAHPC), states:

“Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.” (Radbruch et al. 2020). Similarly, finish care guidelines define palliative care as active holistic care for a person with life- limiting illness and their proxies, aiming to prevent and alleviate suffering and uphold QoL (Palliative Care: Current Care Guidelines 2019).

The term palliative care is also used describe a phase or mindset in the treatment of a serious illness where the disease can no longer be cured (curative treatment has ended) and the focus is completely shifted to treating symptoms, even if palliative care has actually been initiated much earlier (Morrison and Meier 2004). Historically the palliative care movement has been seen to stem from the problems related to the development of advanced life-sustaining treatments. In its care philosophy, the palliative care movement considers the care of those patients who no longer benefit, or who do not wish to undergo aggressive treatments (Clark 2002). The core of palliative care is to understand that all patients should be regarded as unique persons with a right to compassion, gentle truth, autonomy in decision-making and excellence in physical, and psychological and spiritual care (Latimer 1991;

Randall 2006). Palliative care neither hastens nor postpones death and it considers death as a natural event (Radbruch and Payne 2009; Palliative Care:

Current Care Guidelines 2019).

(21)

21

There are two common definitions for the term “End-of-life care”

(Radbruch and Payne 2009). Firstly, EOL care can be used synonymously with palliative care. Historically, this stems from a way of understanding the term

“palliative care” to be mostly associated with cancer, and “EOL care” being applicable to all patients (Radbruch and Payne 2009). Secondly, a more specific understanding of EOL care defines it as comprehensive care for dying people during their last few days. “Terminal care” has also previously been used, mainly in the context of advanced cancer and last few days of illness, but is no longer considered relevant or endorsed (Radbruch and Payne 2009). The Finnish term “saattohoito” refers to comprehensive care that is delivered close to death, similarly to the second way of defining EOL care, mentioned above.

(Palliative Care: Current Care Guidelines 2019) “Saattohoito”, while not directly translatable to English, resembles the French term “Accompagnement de fin de vie” (accompaniment at the end of life) (Radbruch and Payne 2009).

In this thesis, EOL care is mostly used synonymously to palliative care.

However, when the terms are used together (palliative and EOL care), EOL care then refers to care that occurs temporally closer to death.

Hospice care is sometimes defined synonymously to palliative care.

However, no clear definition of hospice care is available, and in different countries and health-care systems it is defined in different ways. When referring to facilities, hospice facilities or hospices are mostly freestanding units in contrast to palliative care units that are more commonly units within a hospital. Socially, hospice care can also refer to care in the EOL that relies on volunteer engagement and community movement (Radbruch and Payne 2009).

(22)

22

2.3 ADVANCE CARE PLANNING

2.3.1 DEFINITION

Advance care planning (ACP) refers to the discussions and statements of persons’ preferences for the goals of their care in the event that they should lose capacity to communicate their wishes. ACP has emerged from wishes to have more control over ones’ last phases of life with regard to the increasing capacity of modern medicine for life-sustaining treatment (Brinkman- Stoppelenburg et al. 2014). More recent definitions of the process emphasize the importance of stating preferences more openly and they include everyday- life and spiritual preferences (Rietjens et al. 2017). Traditionally the goal of ACP has been the creation of written documents in the form of Advance directives (ADs), Do-not-resuscitate (DNR), and Do-not-hospitalize (DNH) orders (Brinkman-Stoppelenburg et al. 2014; Sudore et al. 2017).

The experience of a person engaging in ACP has been found to be less focused on AD documentation (Singer et al. 1998). Reportedly, ACP has more significance in preparing a person towards end-of-life, and key family members are often strongly involved and affected. Thus, the discussions in the process are viewed to be more meaningful than their final results (Singer et al.

1998). An individual’s preferences are not static but emerge and evolve in a series of communications between the individual and their closest people (Singer et al. 1998). Persons suffering from advanced illnesses may benefit most from care that combines life-prolonging treatment, palliation of symptoms, rehabilitation, and support for caregivers (Morrison and Meier 2004). Table 2 summarizes some of the goals of ACP.

Table 2. Various goals of ACP processes

Type of goal Description

Ethical or legal goals Own decision-making in advance for treatment choices is seen as beneficial or mandatory Goals for medical

decision-making

Medical decisions benefit from patient involvement, since medical knowledge should not override a patient’s preference

Intra- and interpersonal preparation

Preparation for death and dying is beneficial for both patient and family

Significance for society, services and costs

Decision making processes can promote beneficial and prevent futile treatments, resulting in more reasonable use of resources

(23)

23

The views of older people towards ACP seem to vary. Some studies have revealed reluctance towards planning for future illness among individuals with advanced disease (High 1993; Carrese et al. 2002). On the other hand, others have noted that many older people would like to discuss EOL issues with their physician if have they have the chance (Sharp et al. 2013).

There is great variation in how legislation relates to ACP documents across different countries. In the US, the Medicare-related payer models can insist on completion of some kind of AD documentation upon admission to a LTCF.

However, in most settings no such demands exist (Hopp 2000). Living wills are legally binding in Finland, but in many countries this is not the case. In Finland, the act on patients’ rights (1992) states that patients should be heard in medical decision-making and they have the right to refuse suggested treatment. The documents traditionally related to ACP processes are outlined in Table 3.

Table 3. Documentation related to the ACP process (Rietjens et al. 2017; Sudore et al.

2017)

Document Description

Advance directive (AD) Documentation about care preferences in the event that decisional capacity is lost

Living will (LW) Mostly synonymous to AD Physician orders on life-

sustaining treatment (POLST)

A specific form to make treatment choices regarding specific medical situations, for example, DNR and DNH orders.

Durable power of attorney

A document where an individual can designate another person to make treatment or economic decisions on their behalf in the event of incapacity The results of a systematic review evaluating the overall effects of ACP promotion interventions suggest the possibility to increase the completion of ADs and the number of EOL discussions, as well as to enhance concordance between preferences and provided care (Houben et al. 2014).

2.3.2 ADVANCE CARE PLANNING IN THE LONG-TERM CARE CONTEXT

LTCF residents have particular difficulties in participating in ACP, as they are often experiencing cognitive decline or communication problems. Therefore, ACP discussions in the facilities are shifted towards collaborative decision- making between staff members and residents’ families. The process is characterized by more pronounced expert participation than in non- institutionalized ACP processes (Martin et al. 2016; Saevareid et al. 2019).

Still, increasing ACP in this setting can have positive effects on EOL care; it can reduce unnecessary hospitalization, improve compliance with end-of-life

(24)

24

wishes and reduce futile but burdensome medical interventions (Brinkman- Stoppelenburg et al. 2014). Similarly, some researchers suggest that it might have other benefits such as improved communication, increased likelihood of dying in the person’s preferred place, health care savings and increasing documentation of care preferences (Jimenez et al. 2018).

Forming traditional comprehensive and highly subjective advance care plans is often not feasible at the time of admission as a result of cognitive decline (Robinson et al. 2012). Also, proxy decision-makers have understandable difficulties in making choices on behalf of their relatives in end-of-life situations, especially if they cannot rely on residents’ prior reported wishes (Fritch et al. 2013). In one study it was noted that physicians were expected to comply with preferences for care, while at the same time providing guidance. This study emphasized the need for physicians to recognize illness trajectories, and provide individualized support in decision-making processes (Fosse et al. 2014). In another it was stated that a considerable degree of disagreement on curative treatment exists between staff members and relatives of incompetent LTCF residents (Moe and Schroll 1997). This suggests a need for comprehensive communication and collaboration. It has been emphasized that discussions with proxies are aimed at bringing forth the wishes of the residents rather than their proxies (Saarto et al. 2015). Shared decision-making is a compelling model to alleviate the uncertainties all stakeholders face. Shared decision making refers to a process where residents’

matters are discussed with participation and contribution from proxies, different facility members and, if feasible, also from the residents. These discussions often involve basic information about disease trajectories, as it has been shown that caregivers’ and proxies’ understanding of dementia trajectories is associated with residents’ later quality of dying (van der Steen et al. 2013).

One widely adopted model of shared decision-making is based around

“Goals of care” discussions (Hanson et al. 2017). The goals for medical and nursing care are often presented in three general categories: 1) all possible medical interventions are used to prolong life (even if most interventions are futile for older people with advanced illness), 2) comfort is emphasized but some burdensome interventions such as hospitalization may be used if they potentially increase survival, and 3) comfort is the only goal of care, hospitalization and burdensome treatments are avoided but may still be possible if they are necessary to ameliorate suffering (treatment of acute traumas for example). Increasing shared decision-making has in some studies reduced the rate of hospitalization, while others have reported inconclusive findings (Hanson et al. 2017; Mitchell et al. 2018; Hickman et al. 2019).

Advance care planning facilitates the likelihood of advance directives and physicians’ orders, which might be generally beneficial, as even a simple physician’s order such as DNR has been noted to be associated with better quality of dying for the resident (Vandervoort et al. 2014).

(25)

25

2.4 OUTCOMES DEFINING QUALITY OF END-OF-LIFE CARE

Key features of palliative care relevant to residents in LTCFs include autonomy of the resident, quality of life, preservation of dignity and the relationship and communication between resident, family and staff members (van der Steen et al. 2014). We are reminded of humanization of EOL care thus:

“The primary emphasis of hospice care is on living life to the fullest- with comfort, dignity, and a sense of connectedness. While the goal of hospice is not necessarily to prolong life, hospice also is not associated with efforts to end life more quickly. Even though there is no hope that the person with end stage dementia will recover memory, people do not consist of memory alone. Human beings have physical, psychosocial and spiritual dimensions that are inherently individual, complex, interrelated and meaningful.” (Kovach et al. 1996)

Patient-reported outcome measures (PROMs) represent the gold standard in evaluating EOL care quality. However, the evidence of the use of PROMs is absent in a LTCF context (Kearns et al. 2017). The reported experiences of residents near death mostly concern fear of pain and other physical symptoms and they highlight psychological distress such as loneliness and depression.

The alleviation of these can be seen as a core element of health-related quality of life (Greenwood et al. 2018). In a systematic review exploring family members’ expectations of EOL care in LTCFs the following items were proposed: “providing residents’ basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting residents’ EOL wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in shared decision-making” (Gonella et al. 2019b). With the aim of translating these experiences and expectations to quantifiable measures, the following sections introduce different outcomes used in evaluating the quality of EOL care.

Outcomes are grouped in four categories: quality of life, quality of care, quality of dying and hospitalization.

2.4.1 QUALITY OF LIFE

Quality of life (QoL) is regarded as the ultimate outcome measure of palliative care. Its importance in evaluating health-care outcomes has been endorsed by the WHO among others. Emphasizing subjectivity, the WHO definition states it as a personal perception of an individuals’ position in life in relation to the social and cultural systems surrounding them and in relation to one’s own goals and expectations (WHOQOL Group 1998). Distinct core domains vary,

(26)

26

with physical, psychological and social well-being being the most universally accepted (Selai and Trimble 1999). A plentitude of different instruments to measure QoL exist (Haraldstad et al. 2019). However, only a few are used in LTCFs. A 2014 review revealed evidence of 15 different scales being used in LTCF settings, with the strongest recommendation from the authors being use of the QUALIDEM measurement (Aspden et al. 2014).

Health-related Quality of life (HRQoL) is a multidimensional construct of an individual’s perceived mental and physical health over time. Being part of general QoL it focuses on the impact of subjective health on general QoL. The instruments for assessing QoL often include physical and mental health, independence, relationships, environment and spirituality (WHOQOL Group 1998). However, they vary in encompassing important LTCF- and EOL-related factors such as wellbeing, personhood or dignity (Haraldstad et al. 2019).

Measures for assessing QoL can be generic (applicable to all) or disease specific. While generic measures are preferred for heterogeneous populations, disease-specific measures can be more sensitive to change (Patrick and Deyo 1989). In Table 4 some of the measures of QoL used in in LTCF settings are compared.

Measuring the QoL of LTCF residents often relies on proxy evaluation and therefore some of the desired subjectivity is lost. It has been noted that self vs- proxy reports tend to be different, especially in residents with dementia.

Examples of this include: proxies rating a poorer overall QoL (Arlt et al. 2008;

Hongisto et al. 2018), depressive symptoms decreasing self-reported QoL more than proxy-reported QoL, and agitation and hallucinations decreasing proxy-rated QoL more dramatically (Hurt et al. 2008; Beerens et al. 2013).

The two basic components of QoL have been defined as an individual’s personal view of their QoL and the external and social circumstances that affect their possibilities. When comparing many of the instruments of HRQoL with the idea of personal perception of QoL, many consider that the used measures mainly assess health state rather than QoL (Gill and Feinstein 1994).

The validity of the different measures has been questioned, as they are commonly developed from a healthy adult perspective and may not effectively measure the subjective aspects that constitute QoL among persons in a very different state of health, such as older institutionalized people (Cummins 1997; Frytak 2000). It has been proposed that these measures overestimate the impact of illness and actually measure its effect on state of health, not QoL or happiness. Research has shown that people are poor at estimating the long- term effect that a health-related event might have on their happiness or QoL (Cummins 1997). Health-care workers tend to underestimate the QoL of older people and mostly fail to recognize the aspects of life that are meaningful for their QoL (Berglund and Ericsson 2003).

(27)

27

Table 4. Comparison of six commonly used QoL measures and how they consist of dimensions of QoL proposed in the WHO QOL project (WHOQOL Group 1998). Note that the QUALID and QUALIDEM scales which are based on observation of behavior cannot distinguish the causes of behavior. Therefore, this categorization is not optimal for them. Validated translations in Finnish are available for all measures except for QUALIDEM (Aalto et al. 1995; Vaarama and Ylönen 2006; Vaarama et al. 2008; Vartiainen et al. 2017). Scale WHOQOL-BREFSF-36EQ-5D/ EQ-VAS 15-D QUALIDEM QUALID General Qualities 26 items. Generally self-reported but proxy possible. 36-items. Originally self- report.

5 items on different scales (1–3, visual).

15 items 37 items of observer-rated behavior. Dementia-specific 11 items of observer-rated behavior. Dementia- specific General healthIncluded Included Not includedNot includedNot includedNot included Physical HealthActivities of daily living, Dependence on medicinal substances and medical aids, Energy and fatigue, Mobility, Pain and discomfort, Sleep and rest, Work Capacity

Bodily pain, General health, Physical functioning, “Role- Physical”

Mobility Pain and discomfort, Usual activities Vision, Hearing, Breathing, Eating, Excretion, Symptoms Positive and negative emotional clues: Crying, Shouting, Sadness, Response to positive clues, Tenseness, Restlessness, Anger, Radiating satisfaction, Self-image Physical discomfort, Crying, Sadness, Sounds of discomfort, Aggression, Calm

Psychological Bodily image and appearance, Negative feelings, Positive feelings, Self-esteem, Spirituality, Thinking, Learning, memory and concentration, Satisfaction with physical appearance, Enjoying life Vitality, Mental well-being, Happiness, “Role- mental”

Depression or Anxiety Sleeping, Thinking and memory, Depression Anxiety, Energy level SocialPersonal relationships, Social support, Sexual activity, Purpose Social functioning Self-care,Mobility, Daily activities, Sexuality Accepting help, Conflicts with staff, Accepting help, Feeling at home, Finding something to do

Interacting with others Environment/ Material well- being

Financial resources, Freedom, physical safety and security, Health and social care: accessibility and quality, Home environment, Opportunities for acquiring new information and skills, recreation / leisure activities, Physical environment, Transport, Feeling safe, Healthy environment, Funds, receiving information Not includedNot includedSpeaking Positive contact with other residents and staff, Social isolation

(28)

28

2.4.2 QUALITY OF CARE AND QUALITY OF DYING

Figure 2 Conceptual model of levels affecting EOL care in LTCFs (Temkin-Greener et al.

2009; Froggatt et al. 2020). ACP = Advance care planning

Interactions with care staff during personal care represent the most common type of social interaction for residents in LTCFs. Thus, quality of care (QoC) is considered to be a key factor in determining QoL at the EOL among residents in LTCFs. QoL related variables measured in the last weeks of life are commonly referred to as Quality of Dying (QoD). No clear transitions exist between measuring QoL and QoD, especially as the prognosis of a LTCF resident is often unpredictable.

Figure 2 presents a synthesis of previous studies by proposing four distinct but overarching levels affecting QoC and QoD. The Macro level refers to legislative, national and regional policies related to minimum care competency, staffing ratios, funding and regulation of LTCFs. The Facility/Administration level refers to adequate resources, continuing education and reflection, good management and monitoring care quality. The level of Care Processes encompasses QoC and refers to the day-to-day work where actual encounters and choices take place. Key features of QoC are palliative and person-centered care, appropriate ACP and resetting care goals accordingly. Communication also plays a crucial role, both between various care providers and also between care providers, residents and proxies. The EOL care that residents receive through care processes is reflected in various measurable QoD indicators, which in turn have the possible capacity to shape all upstream levels if proper feedback mechanisms are in place. This conceptualization builds on work presented previously in a number of studies

(29)

29

(Donabedian 1988; Stewart et al. 1999; Temkin-Greener et al. 2009; Froggatt et al. 2020).

Several methods for measuring residents’ QoC and QoD are in active use, mainly in the research community and to a limited extent in clinical practice.

Because of the high frequency of cognitive decline among residents, self- administered instruments are of very limited reliability and the most widely used instruments are questionnaires for proxies or facility staff members. In line with the conceptualization presented in Figure 2, the different measures are here divided into QoC measures and to those that assess the outcomes of care processes, namely QoD (see Figure 3).

Quality of care, proxy satisfaction and quality of communication

Assessment of the care processes that constitute QoC most often relies on querying family members or other proxies for information. Proxies’

satisfaction with care has been seen to reflect the level of consensus between staff and proxies as regards treatment choices, as well as being associated with comfort of the resident (van der Steen et al. 2012). The importance of consensus in decision-making is acknowledged by both staff and relatives (Lopez 2009; Fritch et al. 2013). Of note, Finnish LTCF residents’ proxies reported the lowest satisfaction with treatment when six European countries were compared (ten Koppel et al. 2019b). This is worrying, since proxies are important stakeholders in good EOL care. Palliative care principles also underline the importance of considering communication and acknowledging the varying emotional and practical considerations proxies have.

Communication barriers between people with dementia and their caregivers have a significant negative impact on residents’ QoL, the quality of care received and given, and the relationships experienced. In a review article it was noted that moderate quality evidence suggests that training professional caregivers in communication skills can improve residents’ wellbeing and behavioral QoL indicators (Eggenberger et al. 2013). Studies of communication between facility physician and relatives have shown notoriously poor results, with only 40% of proxies considering they were kept informed, 50% receiving information about what to expect and 43%

understanding the doctor (Biola et al. 2007).

The family members of decedents were interviewed by Zimmerman and colleagues about 20 existing scales to measure QoC in a LTCF setting (Zimmerman et al. 2015). They found that the Family Perceptions of Physician – Family Caregiver Communication (FPPFC) and the Satisfaction with care – End-of-life in Dementia (SWC-EOLD) were preferable. The FPPFC and SWC- EOL scales give a measure of care quality during last 1–3 months of life. They have both shown good psychometric properties and ease of use for the proxies.

These instruments have been shown to discriminate between whether or not a resident had been hospitalized at a late stage (without inquiring about

(30)

30

hospitalization) and also between residents whose death was or was not expected. The Quality Of Communication (QOC) questionnaire has also been used to evaluate this aspect of QoC. The 13 items in the QOC questionaire discriminate between “general communication skills” and “communication about EOL care” (Engelberg et al. 2006). Other measurements include the Family Perceptions of Care Scale (FPCS) and The Toolkit of Instruments to Measure End-of-life Care After-Death Bereaved Family Member Interview (TIME) (Zimmerman et al. 2015). Hospitalizations, an important care quality indicator, are discussed later in this chapter.

Figure 3 Relationship between Quality of care and Quality of Dying, and how the scales measure EOL care quality and quality of dying. CAD = Comfort Assessment in Dying, EOLD

= End-of-life in dementia, FPCS = Family Perceptions of Care Scale, FPPFC = Family Perceptions of Physician – Family Caregiver Communication, MSSE = Mini-Suffering State Examination, POS = Palliative Care Outcome Scale, QOD–FTC = Quality of Dying in Long- term Care, SM = Symptom management, SWC = Satisfaction with Care, TIME = The Toolkit of Instruments to Measure End-of-life Care After-Death Bereaved Family Member Interview (Zimmerman et al. 2015).

Quality of Dying

As seen in Figure 3, Quality of Dying (QoD) can been seen as an outcome of EOL care processes. Measurement of QoD is mainly focused on different symptoms and evaluations of residents’ comfort. General symptom assessment scales are discussed in the next paragraphs. There are specific tools to assess the symptoms and comfort of LTCF residents. In the study mentioned before, two EOLD scales, the Symptom Management scale (SM- EOLD) and the Comfort Assessment in dying (CAD-EOLD) were preferred by residents’ proxies for measuring residents QoD (Zimmerman et al. 2015).

These scales have shown good psychometric properties and sensitivity to