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

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(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 (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

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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-(SM-EOLD) were preferred by residents’ proxies for measuring residents QoD (Zimmerman et al. 2015).

These scales have shown good psychometric properties and sensitivity to

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change (Kiely et al. 2006, 2012). Other QoD scales may measure symptom control and pain, but also other aspects related to QoL. Other commonly used scales include the Quality of Dying in Long-term Care (QOD-LTC) scale, the Palliative Care Outcome Scale (POS) and the Mini-Suffering State Examination (MSSE) (Zimmerman et al. 2015).

2.4.3 “GENERAL” SYMPTOM ASSESSMENTS

Residents in LTCFs have unmet needs in symptom management. Pain and other physical and psychological symptoms, and spiritual needs are common.

For example, a study by Hanson et al. revealed that residents have high rates of symptoms (47/48% for pain/dyspnea) and suboptimal results from treatment efforts (Hanson et al. 2008). Difficulties in mobility, communication, and a range of neuropsychological symptoms pose a challenge to staff in both managing changing situations and communicating with residents and their proxies (Rolland et al. 2011; Temkin-Greener et al.

2016). Some scales used for general symptom evaluation in LTCFs, and useable also for residents’ EOL-related symptoms, are presented in the following paragraphs.

Pain

Pain has historically been considered to be undertreated in LTCFs, with an increased likelihood of undertreatment among residents with poorer cognition (Hunnicutt et al. 2017). Pain, neuropsychological symptoms of dementia, and functional dependency are interlinked in various ways (Björk et al. 2016). As subjective reporting of pain is very inconsistent for most patients, systematic evaluation of pain with observational tools has been suggested to improve pain treatment. Observational tools include the Pain Assessment in Advanced Dementia (PAINAD), the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and the Rotterdam Elderly Pain Observation Scale (REPOS) (Warden et al. 2003; Fuchs-Lacelle and Hadjistavropoulos 2004; Masman et al. 2018). Additionally, the Visual Analog Scale (VAS) and the Numeric Rating Scale (NRS) for pain can be used, provided that the respondent has the required motor and communicative capabilities (Hawker et al. 2011).

Other symptoms

Other symptom scales are used in LTCF populations but their use is infrequent and poorly characterized. The Edmonton Symptom Assessment Scale (ESAS) is widely accepted in clinical practice, but mostly in cancer research, with limited use in the LTCF population (Bruera et al. 1991; Brechtl et al. 2006). It

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has shown good correlation with health-related quality of life (Silvoniemi et al.

2016; Rajala et al. 2018). Discomfort is sometimes assessed separately, the Discomfort Scale – Dementia of Alzheimer Type (DS-DAT) seeming to be the most frequently used scale (Hurley et al. 1992). The Respiratory Distress Observation Scale (RDOS) has been used to assess dyspnea and related respiratory symptoms, also among non-communicating LTCF residents (Campbell et al. 2010). Additionally, the Resident Assessment Instrument (RAI) and the Minimal Data Set (MDS) that are comprehensive and widely used assessment tools to assess residents periodically in their facilities (Hawes et al. 1997). RAI assessments are mandatory in Finnish LTCFs as well as in many other western countries. They have shown promise in improving care processes from the facility perspective, but evidence of their usefulness in improving symptom control or other aspects of EOL care is lacking (Achterberg et al. 1999, 2001).

2.4.4 HOSPITALIZATION OF LONG-TERM CARE FACILITY RESIDENTS