Palliative care in the final week of life of older people in nursing homes: a register-based study

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Name: Jonas Smedbäck, RN.

Master’s programme in palliative care, 120 ECTS, Department of Health Care Sciences

Thesis in health care sciences, 30 ECTS, VKAE30, Fall 2015 Graduate level

Supervisor: Cecilia Håkanson Examiner: Ingrid Hellström

Palliative care in the final week of life of older people in nursing homes: a register-based study

Palliativ vård under den sista levnadsveckan för äldre personer på

vård- och omsorgsboenden: en registerbaserad studie

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Abstract

Background: Current palliative care recommendations stress the right to care according to palliative principles at the end of life for all people in need thereof, regardless of care place and including those who are old. The international literature indicates that residents in nursing homes often do not have access to palliative care competence. Accordingly, insufficient management and lack of communication about end-of-life issues have been reported. There is a scarcity of robust Swedish studies about the quality of care at the end of life in nursing homes.

Aim: To explore the care being provided in the final week of life of older people in nursing homes.

Method: The study used data from the Swedish Register of Palliative Care, of all registered individuals aged 60 and older, who died in nursing homes 2011 and 2012. Variables

pertaining to monitoring and treatment of symptoms, end-of-life discussions, and

circumstances around death, and individual characteristics of the deceased individuals, were explored with descriptive statistics.

Results: The most common underlying causes of death were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%) and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1% and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessments was reported for pain in 12.3% and 7.8% for other symptoms. The most prevalent individual prescriptions for

injection PRN were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals, and with 53.9% of their relatives.

Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of the all nursing home resident deaths recorded, 45.3% died in their preferred place.

Conclusion: There were large variations in the degree of relief from the different symptoms in the final week of life. Pain was the most prevalent symptom, and was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well relieved. The results indicate a need for improvements in palliative care in nursing home settings, focusing management of distressing symptoms and end-of-life discussions.

Keywords: end-of-life; nursing home; older people; palliative care; symptom relief.

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Sammanfattning

Bakgrund: Målet om rätt till palliativ vård för alla som behöver, oavsett vårdplats och inkluderande äldre personer. Äldre individer har ofta multisjuklighet, inklusive kognitiv svikt som ställer särskilda krav på kompetens under livets sista tid. Internationella studier indikerar dock att personer som dör på vård- och omsorgsboenden ofta inte får tillgång till palliativ kompetens, med till exempel inadekvat symtomlindring och bristande kommunikation om döden. Robusta svenska studier om innehållet i vården i livets slutskede för personer på vård- och omsorgsboenden saknas.

Syfte: Att beskriva vården under den sista levnadsveckan, för äldre personer på vård-och omsorgsboenden.

Metod: Studien baserades på data från Svenska Palliativregistret av alla registrerade individer > 60 år som avlidit inom vård- och omsorgsboenden 2011 och 2012. Variabler relaterade till symtom, symtomkontroll, brytpunktssamtal och omständigheter kring döden samt individuella karaktärsdata utforskades med deskriptiv statistik.

Resultat: Vanligaste underliggande dödsorsak var cirkulatoriska sjukdomar (42.2%) och demenssjukdomar (22.7%). Mest förekommande symtomet var smärta (58.7%) följt av rosslighet (42.4%), ångest (33.0%), förvirring (21.8%), andfåddhet (14.0%) och illamående (11.1%). Symtomet som lindrades till största del var snärta som helt lindrades för (46.3%) medan andfåddhet och förvirring lindrades helt hos 6.1% respektive 4.3% av individerna.

Validerat skattningsinstrument användes för smärta i 12.3% av fallen och i 7.8% för andra symtom. Vanligast förekommande individuella vid behovsordinationen för injektion var för behandling av smärta (79.5%) och mot rosslighet (72.8%).Brytpunktsamtal genomfördes med 27.3% av alla individer och med 53.9% av alla närstående. Önskad dödsplats uppfylldes hos 45.3% av individerna. Av alla individer hade 82.1% någon, i registret valbar, hos sig vid dödsögonblicket och i (15.8%) dog individen ensam.

Slutsats: Det fanns stora variationer i graden av lindring för symtom under sista

levnadsveckan. Smärta var vanligast förekommande och även det symtom som till högst grad lindrades helt eller delvis. Andra symtom förekom mer sällan men lindrades även till lägre grad. Resultaten indikerar ett behov av förbättring inom den palliativa vården inom vård- och äldreboenden, fokuserat mot hantering av besvärliga symtom samt brytpunktssamtal.

Nyckelord: end-of-life; nursing home; older people; palliative care; symptom relief.

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This thesis was based on the following article:

Smedbäck, J., Öhlén, J., Årestedt, K., Alvarizia, A., Fürst, C-J., & Håkanson, C. (2016).

Palliative care in the final week of life of older people in nursing homes: a registered based study. Palliative & Supportive Care, (Submitted, 09-Jul-2016).

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Included in this work is to retrospectively report information about care being provided in the last week of the nursing home resident’s life in the National register for palliative care. The register provides opportunities for reflection of the care being provided, and to what extent residents who are dying is relieved from their symptoms.

Over the years I have seen little improvement, if any, regarding the frequency of end-of- life discussions in nursing homes. The same can unfortunately be said about the effective- and routine use of validated assessment tools.

I have often experienced that residents still have unmet end-of life care needs. Often older people seem to struggle with shortness of breath and nausea, which is also quite often

reported by relatives, to staff, and pain seems undertreated from time to time. Hence, several domains of care for residents who are dying seem, according to my clinical experience, to be in need of improvement, and annual reports from this register, seem to confirm my belief.

When reviewing the literature, I found little previous research about the quality of care at the end of life for residents in nursing homes, and hence, I wanted to scientifically explore this topic. This study is part of a larger register-based research project about quality of death, performed by a research team at Palliative Research Centre at Ersta Sköndal University College, to which I was invited to be a part of.

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Background

Nursing homes (i.e. short- and long-term care facilities) are common places of death for older people (Gomes & Higginson, 2008; Håkanson, Öhlén, Morin & Cohen, 2015; Reyniers et al., 2015).Many older people are frail due to multiple illnesses and disabilities (Clegg, Young, Iliffe, Rikkert & Rockwood, 2013), and thus they may have various palliative care needs that increase along with their illness trajectory towards dying (Estabrooks et al., 2015; McGuire, Reifsnyder, Soeken, Kaiser & Yeager, 2011).

Sweden and many other countries have aging populations. The European population aged over 65 years of age is expected to reach 25% in 2050 (Centeno, Carrasco, Woitha, &

Garralda, 2015; Hall, Petkova, Tsouros, Constantini, & Higginson, 2011). People, due to medical advancements live longer with life-limiting illness and declining health/function capacity (Lunney, Lynn, Foley, Lipson, & Guralnik, 2003).The country has a long-standing tradition of providing special care for those who are old (Dwyer, 2011), which has contributed to a strong nursing home establishment with the numbers of nursing home beds being among the highest in the world, and among the highest total health and social service expenditures for older people in Europe (The Swedish National Board of Health and Welfare, 2009).

In 2012, 38 % of all Swedish people died in nursing homes (i.e. short and long term residential care facilities). Of those individuals, 16% were between 60-79 years old and 83%

were 80 years or older (Håkanson et al., 2015).

Older people often have a complex blend of chronic illnesses (e.g. chronic heart failure, chronic obstructive pulmonary disease, dementia etc.) over a long period of time, and accordingly they may have various palliative care needs during different time points of their illness trajectory. With older age several symptoms tend to be more common than in younger populations, for example issues with mobility and different mental disorders, confusion, pain, incontinence, constipation and depression (Albers et al., 2015). Older people also more often experience social isolation, i.e. from diminishing contact with friends and family, and

existential distress such as fear or hopelessness (Van Vliet, Antunes, & Higginson, 2015; Hall et al., 2011).

The illness trajectories for individuals with chronic conditions differ regarding decline and the need of palliative care interventions depending on the underlying primary illness.

Individuals with cancer often maintain function and capability for longer periods of time followed by rapid decline during the final weeks and days before death. The second trajectory includes long-term limitations with shorter intermittent exacerbations followed by a rather sudden death associated with organ failure. The third trajectory characterises a prolonged

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dwindling with individuals suffering from mostly frailty and dementia (Albers et al., 2015;

Van Vliet et al., 2015). Some of the older dwellers in nursing homes may need specialist palliative care whereas all residents, regardless of diagnosis, may benefit from generalist palliative care (Hall et al., 2011).

Many countries have developed strategies for coordinating socio-health services in

accordance with their ageing population, but still there is little policy considering the specific needs of older people at the end of life. Health care and social service providers are

increasingly challenged by this demographic change, and of the claim from the World Health Organization (Hall et al., 2011), and in Swedish guidelines (The Swedish National Board of Health and Welfare, 2013) for equal access to, and integrating of palliative care in all places where older people are cared for.

Palliative care

Palliative care is defined by the World Health Organization (2010) as: ” an approach that improves the quality of life of patients and their families facing the problem 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.”

Philosophically palliative care takes a holistic person-centred view of illness and suffering that acknowledges the ill person as being both capable and suffering, and it affirms life and the promotion of wellbeing until death, by supporting the patient and family's goals for the future, including their hopes, wishes and needs as well as comfort and control. A set of key domains together define the concept of quality of care at end of life: physical comfort, spiritual and psychological well-being, shared decision making, communication, support to family members and access to care (Randall & Downie, 2006; Sawatzky et al., 2016)

Dame Cicely Saunders is acknowledged worldwide for being the founder of the modern hospice movement, laying ground for modern palliative care. Dame Saunders was a nurse and a physician, who through her work in hospices experienced much suffering and unrelieved pain, which led to her to develop the concept “total pain”, stressing that all pain should be holistically viewed, taking into account the four dimensions of pain: physical, psychological, psychosocial and existential (Clark, 1999).

While modern medicine developed more advanced treatments to prolong life, the hospice movement raised concerns that these treatments would only prolong the process of dying.

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Therefore, according to the idea of acceptance, meaning, and fulfilment, the concepts of dignity and quality of life were emphasized, stressing that patients were not referred to a hospice to “just die”, but rather to live until they died (Randall & Downie, 2006).

Modern palliative care has through the medical advancements of recent years adopted many of the available treatments that have their roots in the Hippocratic tradition of medicine, and hence, a biomedical focus. However, palliative care still also holds a firm connection to the Asklepian tradition, which emphasizes attention to the individual and their story, and focuses on; quality of life, well-being, dignity, meaningfulness, holistic care, and spirituality (Randall & Downie, 2006).

In the discourse of palliative research and care practice, several concepts/domains have been stressed. I have chosen to present the following domains, which I regard to be

particularly relevant for palliative care of older people; relief from suffering, dignity, identity and autonomy, communication about death and dying, and palliative care levels and

organisation.

Relief from suffering

During the final period of life, a variety of symptoms are known to be distressing (Ellershaw, Smith, Overill, Walker, & Aldridge, 2001). Relief from suffering is one of the key goals of palliative care (Hall et al., 2011) but this is often challenging, especially in the care of older people. Many times the suffering and hence, opportunities to relieve the suffering go unnoticed (Öhlén, 2013).

Suffering can be seen as an aspect of life, and a consequence of illness, disability, or dependency on health care facilities. These aspects may influence how a person experience life –and dying: in many cases suffering is one of the most debilitating conditions at the end of life (Öhlén, 2013). Few aspects of palliative care are as personal and subjective as

suffering. Often the suffering becomes an existential struggle between hope and hopelessness, meaningfulness and meaninglessness, and comfort and despair. Suffering itself is meaningful as it allows a person to grow and rise above the suffering; to strengthen and discover existing personal resources and find new meaning through new or rediscovered faculties (Öhlén, 2013).

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Dignity, identity, and autonomy

Dignity entails different aspects for different people. According to palliative principals, care should be performed respectfully and in an open and sensitive manner. Values, such as personal-, cultural-, and religious should all be adhered to. Provide a care setting that takes into account all these needs for all different individuals is however challenging (Radbruch &

Payne, 2009). Dignity can, according to Nordenfelt (2010), be experienced and explained through four different domains. The first domain is the fundamental human value, which is superior to the others and under no circumstances can be lost or diminished. Dignity of

merits, achieved by our working status or accomplishments is the second domain, followed by moral dignity, which is bestowed on an individual by actions of high moral character and actions deserving respect and reverence. Finally, our dignity of identity, is the domain which can be argued is especially important in the care of older people (Nordenfelt, 2010). Dignity, as viewed by older people themselves, can be related to how the body is experienced. Dwyer (2008) has categorized nursing home residents’ experiences of the body-identity-dignity triad in the following themes; unrecognizable body, fragility and dependence, and inner strength and sense of coherence. In her work, to live in an unrecognizable body, or experience fragility and dependence, constituted a threat for nursing home residents’ dignity. However, the

experience of inner strength and a sense of coherence had positive outcomes on the aspect of dignity and constituted increased wellbeing (Dwyer, 2008).

According to Ternestedt and Norberg (2013) identity is a fundamental part of palliative care, which in several contexts is closely linked to an individual’s dignity and the desire to live as one previously has, to continue one’s everyday life. Our identity focuses on who we are; according to ourselves, and according to others. Several dichotomous areas in palliative care can be connected to the experience of identity, such as; denial- insight, hope-submission or comfort-discomfort (Ternestedt & Norberg, 2013).

In palliative person-centred care, the unique individual and his autonomy is acknowledged and respected. Patients should be helped and well informed in order to make the decisions they would like to make, and care is provided to patients and their family members only if they willingly accept it. The patient requires adequate information about everything regarding their care, such as; diagnosis, prognosis and available treatment options (Radbruch & Payne, 2009). Changes in autonomy, and whether or not an individual is dependent on others, is strongly associated with feelings of identity and pride, and this may in palliative care, with

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regard to cultural aspects of an individual’s value, be hard to handle. If an individual’s worth is measured through his or her contribution to society, limited autonomy and higher

dependence might be devastating and in care at end of life the feeling of being a burden can be more unbearable than most other symptoms, short of unrelieved difficult pain (Strandberg, 2013).

Communication about death and dying

Communication and building relations are essential in order to conduct palliative care in accordance with the individual’s own explanation and description regarding their life and aspects of importance (Ternestedt & Österlind, 2013). Communication is a requirement for good quality palliative person-centred care, and this includes communication between health care professionals and the patient, between the patients and their relatives, and between different health care facilities (Handley et al., 2014).

Dissatisfaction from patients and relatives is largely connected to ineffective

communication rather than the delivery of individual care. This can be a challenging task for health care professionals. Communication entails discussions about painful concerns, and hence, needs to be conducted with great sincerity. Furthermore, communication often contributes to, or may diminish the patient’s, or family’s, feelings of hope and purpose, as well as their grief and bereavement (Radbruch & Payne, 2009).

Palliative care levels and organisation

Current palliative care recommendations stress the right to care according to palliative principles at the end of life for all people in need thereof, regardless of care place and including those who are old (Jünger, Payne, Brearly, Ploenes, & Radbruch, 2012; The Swedish National Board of Health and Welfare, 2013).

Palliative care can be provided as an approach, integrated in settings not specialised in palliative care (e.g. nursing homes); as general palliative care, provided by primary care professionals and specialists (e.g. oncologists, geriatricians), with basic palliative care skills and knowledge, who are more frequently involved but do not provide palliative care as the main focus of their work; and finally as specialist palliative care, provided in special facilities by multidisciplinary teams with palliative expertise.

With a person-centred holistic view, a palliative approach to care (being the most common alternative in Swedish nursing homes), emphasis is on careful assessment and management of

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disease-associated symptoms, and on the importance of compassionate and skilled care for individuals who are imminently dying. Quality of life is seen as the primary goal. Literature highlights the importance of therapeutic relationships between providers and the patient and family, with an emphasis on building partnerships to enhance care quality. Clear

communication throughout the illness trajectory is stressed as significant; particularly in relation to conversations about advance care plans, goals of care, and shifts in the management of the disease process or the plan of care (Sawatzky et al., 2016).

Delivering a palliative approach early on in the illness trajectories necessitates capacity within the healthcare systems; to recognize and address the evolving end of life care needs of people who have chronic life-limiting conditions, regardless of care place. However, it is widely acknowledged that the expertise required for a palliative approach does not lie exclusively with any particular discipline, profession or healthcare sector, and therefore inevitably requires integration into existing care models and systems in partnership with a range of healthcare providers (Radbruch & Payne, 2009).

Palliative care for older people

Many older people have multiple illnesses and a variety of interacting symptoms. For

example, physical pain may trigger confusion or anxiety, and vice versa. The symptoms may develop gradually or sudden, and they may change character over time. Moreover, the ability to communicate often declines at the end of life, and adding to this, many older people suffer from cognitive disorders (McGuire et al., 2011). Additionally, there may be differences of opinions between the involved parties (the resident, the family and the professionals)

regarding priorities related to information and symptom relief at the end of life (Raijmakers et al., 2011; Vedel et al., 2014). Together these aspects add to the complexity of assessing symptom distress and evaluating the outcomes of symptom treatment/relief (Browner &

Smith, 2013), and hence, to the performance of high quality care at end of life (Brandt et al., 2005a).

Several physical and psychological symptoms and needs may develop for the older person, approaching end of life, but there are also existential and social issues that may arise. The older person may experience diminishing contact with friends and family, being less prone to receive adequate information about care from caregivers, experiencing unfinished projects and loss of control, and existential distress like fear or hopelessness. All these troubles and needs however, may risk of being overlooked, or rather unrevealed within the older

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population, due to the older persons being reluctant to initiate conversations about these matters themselves, and to inadequate attention from caregivers (Van Vliet et al., 2015).

Interacting co-morbidities and symptoms, and hence increased vulnerability present older people as a group where most individuals should have access to palliative care (Brandt et al., 2006). However, younger individuals have in studies shown to have a higher likelihood of being referred to palliative care than older people (Van Vliet et al., 2015). Furthermore, being institutionalized at old age has in a recent study been identified as a risk indicator for lower quality of care at end of life (Lindskog, Tavelin, & Lundström, 2015).

The international literature reveals that residents in nursing homes often do not have access to palliative care competence; neither via staff in the nursing homes, nor from external

consulting palliative care-specialists/teams (Brazil, Brink, Kaasalainen, Kelly, & McAiney, 2012; Hallberg, 2006; Seymour, Kumar, & Froggatt, 2011; Steers, Brereton, & Ingleton, 2007). Accordingly, it is reported that many older people in nursing homes receive

insufficient management of pain (Hanlon, Perera, Sevick, Rodriguez, & Jaffe, 2010) and other symptoms (Brant et al., 2005b; Corazzini et al., 2013; Miller, Lima, Looze, & Mitchell, 2012;

Mitchell, Kiely, & Hamel, 2004; Oliver, Porock, & Zweig, 2005), and that there is lack of communication about end-of-life issues (Clark & Seymour, 2010; Dwyer, 2008; Pleschberger et al., 2011). Alongside with lack of palliative care competence, insufficient leadership and organisational strains have been stressed as other barriers for the implementation of palliative care in nursing homes (Dwyer, 2011; Handley et al., 2014; Lo et al., 2010).

There is a scarcity of robust studies about palliative care in nursing homes. Such studies can provide knowledge to inform policy and clinical guidelines for the development of appropriate palliative care for older people. The Swedish register for palliative care provides information based on palliative care quality indicators relating to care in the last week of life for people in all settings, including nursing homes (Martinsson, Fürst, Lundström,

Nathanaelsson, & Axelsson, 2012). Monitoring the quality of palliative care through quality registers enables feedback on how well health care facilities manage to adhere to guidelines (Lindblom, Bäck-Pettersson, & Berggren, 2012; Lundström, Axelsson, Heedman, Fransson,

& Fürst, 2011). Such knowledge can inform policy and clinical guidelines for the

development of high quality of care during the final week of older people’s lives in nursing homes. Hence, in this study, the aim was to; based on data from the Swedish register for palliative care, explore the quality of palliative care in the last week of life of older people who died in nursing homes.

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Aim

To explore the care being provided in the final week of life of older people in nursing homes.

Method

Design and study population

This study is an explorative cross-sectional retrospective, register-based study. Data from 2011-2012 was obtained from the Swedish Register of Palliative Care; a population based quality register reflecting care in the last week of life. In 2011 the register covered 53% of all deaths in Sweden and in 2012, 62% (Lundström et al., 2011). This study included all

registered individuals aged 60 and older, who died in nursing homes (n=49,172) in the years 2011 and 2012.

The register is linked to the Swedish Causes of Death Certificate Register, covering all deaths, to identify underlying causes of death, classified according to the International Statistical Classification of Diseases and Related Health Problems (ICD-10), and reported by physicians. The register includes data from patient-level and service unit-level questionnaires that are completed by health care providers. This study used data from the patient-level questionnaire, which is completed retrospectively to collect information about individual patients’ care episodes during the last week of life, including symptom presence and relief (Lundström et al., 2011). Data was delivered to the research team in an anonymous partially coded format as a SPSS file.

The study is part of a larger research project about quality of dying, hosted by a palliative care research team at Ersta Sköndal University College in Stockholm, Sweden

Variables

In this study, a set of quality indicators relating to key goals of palliative care, namely symptom monitoring, end-of-life discussions, and circumstances around death were chosen, along with individual characteristics of the deceased individuals.

The following variables were used: 1) Individual characteristic variables: age, sex (male, female) and underlying cause of death. The underlying cause of death variable was based on the 11 categories in the quality register: circulatory diseases; dementia; cancer diseases (neoplasms); respiratory diseases; endocrine, nutritional and metabolic diseases; neurological diseases; digestive diseases; infectious diseases; mental and behavioural diseases; death by external causes; and “other” diseases; 2) Symptom variables: symptom prevalence (yes, no,

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don’t know) and symptom relief (totally, partially, not at all, don’t know) for the following symptoms: pain, rattles, nausea, anxiety, shortness of breath and confusion; 3) Assessment and prescription variables: symptom assessment using a valid assessment tool for pain and for

“symptoms other than pain”, with the response options yes, no, don’t know, and individual prescriptions for injection PRN (Pro Re Nata, when need arises) for treatment of pain, rattles, nausea and anxiety (yes, no, don’t know); 4) Variables reflecting circumstances around death:

End-of-life discussions performed with residents and with relatives (yes, no, don’t know);

death occurring in the preferred place (yes, no, don’t know); and someone present at time of death (no one, health care professionals, relatives, relatives and health care professionals).

Statistical analysis

All variables were explored using descriptive statistics. The Statistical Package for the Social Sciences v.22.0.0.0 for PC (SPSS, IBM Corp.) was used.

Ethical considerations

All individuals included in this study are deceased. Since all data was anonymised before delivery to the research team, the risk of harming bereaved relatives or in any way disgrace the deceased individuals was judged to be very limited or non-existing.

Data is being stored electronically in servers at Ersta Sköndal University College in Stockholm, Sweden.

The Regional Ethical Review Board in Stockholm, Sweden, approved the study prior to commencing (no. 2013/1576-31/3).

Results

The mean age of all 49,172 registered individuals 60 years and older who died in nursing homes in 20122013 was 86.7 years (range 60-110, SD 7.4), and 62.3% were women. Death was reported as unexpected in 11.1% of all cases. The number of days enrolled in the nursing home before their death ranged from 1 day to more than 2,5 years (Figure 1).

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Figure 1. Days of enrolment in the nursing home before death

Underlying cause of death

The most common underlying causes of death among the deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). Cancer caused 15.4% of all deaths, whereas respiratory diseases caused 5.3% and neurological diseases 2.3% (Figure 2).

Figure 2. Distribution of underlying causes of death

5,1%

8,2%

13,9%

29,3%

43,5%

1-5 days 6-14 days 15-42 days 43-282 days 283-1053 days

n= 15,321 (32.1% missing)

42,2 22,7

15,4 5,3

4,5 2,9 2,3 1,5 1,5 1,2 0,5 Circulatory diseases

Dementia diseases Cancer diseases Respiratory diseases Other diseases Endocrine, nutritional, metabolic diseases Neurological diseases External causes Infectious diseases

Digestive diseases Mental and behavioural diseases

Underlying cause of death %

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Symptom presence & symptom relief in the last week of life

The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%) and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1% and 4.3% of all individuals, respectively.

The use of valid instruments for symptom assessments was reported for pain in 12.3% of the individuals and 7.8% for other symptoms.

The most prevalent individual prescriptions for injection PRN reported were for pain treatment (79.5%) and rattles (72.8%). The distribution of symptom prevalence, degree of symptom relief among individuals for which symptom prevalence was reported, and individual prescriptions of injections PRN are described in further detail in Table 1.

Table 1. Symptom prevalence, relief and individual prescriptions of injections PRN

Pain Rattles Nausea Anxiety Shortness

of breath

Confusion

% % % % % %

Symptom prevalence

Yes 58.7 42.4 11.1 33.0 14.0 21.8

No 26.4 44.7 69.3 45.6 70.8 54.6

Don’t know/missing ^a 3.8/11.1 1.8/11.1 8.5/11.1 11.3/11.1 4.1/11.1 12.5/11.1

Symptom relief ^b

Totally relieved 46.3 22.8 5.4 22.2 6.1 4.3

Partly relieved 12.4 18.6 5.3 10.6 7.6 12.0

Not relieved at all 0.1 1.0 0.4 0.2 0.4 5.5

Individual prescription of injection PRN for treatment ^c

Yes 79.5 72.8 45.6 68.2 x x

No 8.8 15.2 41.6 19.5 x x

Don’t know/missing ^a 0.7/11.1 0.9/11.1 1.7/11.1 1.2/11.1 x x

a Includes all “don’t know” responses and missing values.

b Proportion of all individuals who have the symptom i.e., “yes”-responses.

d Information about individual prescriptions of injections PRN for treatment of shortness of breath and confusion is not included in the register.

End-of-life discussions and desired place of death

End-of-life discussions were performed with 27.3% of all the deceased nursing home residents, and with 53.9% of their relatives.

Of all individuals, 82.1% had someone present at the actual time of death, and 15.8% died alone (2.1% missing).

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Of the total number of nursing home resident deaths recorded, 45.3% were reported to have died in their preferred place, i.e. in the nursing home (Table 2).

Table 2. End-of-life discussions and circumstances around death

%

End-of-life discussions with nursing home residents

Yes 27.2

No 51.3

Don’t know/missing (residents) 10.4/11.1

End-of-life discussions with relatives

Yes 53.9

No 25.9

Had no relatives 1.5

Don’t know/missing (relatives) 7.6/11.1

Someone present at the actual time of death

No one 15.8

Staff 38.2

Relatives 25.7

Relatives and staff 18.2

Don’t know/missing 1.9/0.2

Died in the preferred place of death

Yes 45.3

No 1.8

Don’t know/missing 41.8/11.1

Discussion

Among all individuals who died in nursing homes between 2011 and 2012, for which

information was reported in the Swedish palliative care register, pain was the most prevalent symptom, whereas nausea was the least common. Even though pain was most frequent it was also the symptom that in most cases was reported to have been totally relieved, as opposed to confusion, which had low frequency of total relief. The reported frequency of assessment of symptoms using valid instruments was low, regardless of symptom. Of all individuals most had individual prescriptions for injections PRN for treatment of pain, rattles, and anxiety.

End-of-Life discussions were performed with most relatives but to a much lesser degree with

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the residents themselves. Health care professionals were most frequently present at the time of death.

The results relating to symptom presence- and relief, rhymes with previous literature (Corazzini et al., 2013; Miller et al., 2012; Mitchell et al., 2004; Oliver et al., 2005;

Andersson, Lindqvist, Fürst & Brännström, 2016). The tendency of a stronger recognition of pain than other symptoms harmonize with another recent Swedish retrospective study by Andersson et al. (2016) about quality of care in the last 3 days of life of nursing home residents, as recalled by bereaved family members. The study showed inadequate

management of symptom relief, with 46.5% of the older individuals having pain and 86.4%

receiving pain treatment, and 55.9% having breathlessness but only 39.7% of those receiving treatment accordingly. Interestingly, in this study, breathlessness was also treated more often among the younger individuals than the oldest old.

Several interacting symptoms can make effective and targeted treatment more difficult since the primary symptom can be hard to recognize. If pain is successfully treated other symptoms might present themselves as the actual underlying cause of the distress (McGuire et al., 2009). In the present study, the frequency of symptom assessments using valid

instruments was low, regardless of the symptom. Adequate assessment is fundamental to managing symptoms and, ideally, these assessments should be self-reported. However, clearly self-reporting is highly challenging in the final week of life, e.g., because of communication decline, pharmacological treatment, cognitive impairment and exhaustion (Brandt et al., 2005a; Estabrooks et al., 2015; McGuire et al., 2011). Moreover, translating a subjective sensation or emotion into a numeric value on a scale may be a difficult and abstract task for the older person who is dying, and as well for relatives if they are the ones to respond on behalf of the person (Antunes, Harding & Higgins, 2014).

It has been shown that nurses play a key role in the effective management of pain, through the use of pain assessment tools, observation, and choice of treatment. Pain assessment in dementia however remains challenging, due to the complexity in communication and understanding of pain behaviours. Hence, this requires appropriate training, workforce stability and a standardised approach to pain assessment (McIlfatrick, 2015; Wowchuk, McClement, & Bond, 2007). It is likely that there is little difference between the challenges, skills and standardised (but person-centred) processes needed to assess, interpret and treat symptoms other than pain.

Of all the registered nursing home resident deaths, 11.1% were reported to have occurred unexpectedly. At the same time, the period of enrolment in the nursing home before death

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varied largely. It is worth reflecting upon what “unexpected death” in the context of nursing homes really means, especially considering policies (van der Steen et al., 2014; World Health Organization, 2014) stressing early integration of palliative care for older people. Linked to this, our study also showed that end-of-life discussions with relatives were performed for approximately half of all nursing home residents but with less than a third of the individuals themselves.

The goal of palliative care: multidimensional relief from suffering to maximize wellbeing requires understanding the existential/spiritual needs of a dying person. Moreover, clear information about when the focus of care shifts from an early palliative stage, which may, for example, include life-prolonging treatments, to late palliative care and symptom control is considered one of the cornerstones of palliative care. In one previous study, it was shown that the course of the disease and prognosis were more commonly discussed than spiritual and existential problems, even though older people themselves considered these topics to be of great importance (Morin, Johnell, van den Block, & Aubry, 2016). Linked to this, a recent study, reviewing care documentation for older people with dementia in nursing homes, revealed that physical symptoms were relatively well documented compared with psychological or existential/spiritual needs (Høgsnes, Danielson, Norbergh, & Melin- Johansson, 2016).

End-of-life discussions were performed with few of the deceased individuals. Previous studies have suggested a scarcity of end-of-life discussions with older people in nursing homes and geriatric care (Clark & Seymour, 2010; Dwyer, 2008; Pleschberger et al., 2011).

Communication about death and dying is fundamental to patients if their individual needs are to be addressed. In order to have a patient-centred approach and share/receive information about existential and spiritual needs, trustful relationships, including person-centred

communication between the patient and his/her relatives, and the health care professionals, is essential. A patient’s dignity, identity, and autonomy has great importance in these

circumstances if we, as health care professionals, together with the patient, are to keep the quality of life and wellbeing till death for the patient (Dwyer, 2008; Nordenfelt, 2010). Most patients and relatives wish to discuss issues regarding death and dying. It has been shown that when relatives and patients have a negative experience about the provided care, the main issue has been a lack of communication and information and not untreated symptoms (Radbruch & Payne, 2009).

Overall quality of care has been shown to be higher among patients with whom end-of-life discussions have been performed (Lundqvist et al., 2011). It has also been reported that for

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nursing home dwellers, there is a strong association between the quality of dying and having a written advance directive (i.e., documented wishes of the individual), and relatives report lower levels of emotional distress at the end of life, particularly in the context of dementia (Andersson et al., 2016). Previous literature has shown that early integration of palliative care can promote end-of-life discussions and, hence, this is one of several arguments for stressing early integration of palliative care in the nursing home context. However, performing end-of- life discussions has proved particularly difficult at the early stages of palliative care of older people in nursing homes, because of difficulties in predicting life expectancy in many life- limiting illnesses other than cancer (Hallberg, 2006; Kehl & Kowalkowski, 2012).

Accordingly, our results confirm the findings of previous studies, which have indicated a scarcity of end-of-life discussions with older people in nursing homes and geriatric care (Clark & Seymour, 2010; Dwyer, 2008; Pleschberger et al., 2011).

The relief of suffering, regardless of the origin, is a well-established key issue regarding quality of palliative care in patients’ end of life. There are however difficulties in relieving the actual cause of the distress and opportunities to do so sometimes go unnoticed. Suffering is more than just relief from specific symptoms such as pain. Suffering can be seen as an individuals’ ability to endure their own body and therefor consists of more than physical aspects. Hence, factors such as spirituality, existentiality and environment need to become the focus of health care professionals in order to relieve suffering for the individual on more than a physical level. Health care professionals can promote knowledge about these different aspects of a person’s care needs by providing care with empathy and compassion through understanding of the importance of dignity and identity for the person (Öhlén, Bengtsson, Skott & Segesten, 2002; Öhlén, 2013).

Caring for older people in nursing homes requires multiple competences: general medical care geriatric care and palliative care and nursing in order to achieve a good care quality and wellbeing of the dying person (Curtis et al., 2001). Some aspects of symptom assessment and monitoring, and the provision of end-of-life discussions seem to have potential for

improvement. The high prevalence of injections PRN for symptom treatment however indicates compliance to the Swedish guidelines (The Swedish National Board of Health and Welfare, 2013) among the nursing homes that are represented in the quality register. This together with the more positive patterns of symptom relief further indicates that structures and processes for palliative care to a certain extent are in place.

Adequate assessment is fundamental to managing symptoms. Ideally these assessments should however be prospectively self-reported, and there are several validated existing

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assessment tools, such as the Support Team Assessment Schedule (STAS), Edmonton Symptom Assessment Schedule (ESAS), and Palliative Care Assessment (PACA), even though these tools do not entirely encompass the care of the dying patient (Ellershaw et al., 2001). Self-reporting is however highly challenging in the last week of life, because of communication decline and exhauster during the dying process (McGuire et al., 2011).

Study limitations

Data from the Swedish Register of Palliative Care does not cover the total death population in the country and hence not all nursing home deaths, and of those who were registered, for the individuals who were reported to have died unexpectedly, information was incomplete. This, and the recognition that service unit participation in the register has previously been

associated with quality of care improvements (Martinsson et al., 2012), may call for some considerations in relation to generalization of the results to the whole population of older individuals dying in nursing homes. Moreover, the validity of data should be interpreted based on the fact that professionals and not the patients themselves retrospectively reported the information.

In this study no distinction was made between short and long term care facilities. The age of residents in short term care facilities may be significantly lower than the age of people residing in long term care facilities. The variables that were used by means of mirroring the quality of palliative care in the nursing homes may not represent all aspect of care. Still, we believe that the results provide valuable knowledge about important key concerns within a palliative approach and the actual care activities being provided in Swedish nursing homes.

Conclusion and implications

There were large variations in the degree of relief from the different symptoms in the last week of life of the nursing home residents. Pain was the most prevalent symptom, and was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also much less well relieved. Hence, structures and processes for the

management of pain may to a larger extent be in place in nursing homes, whereas the results indicate a need to focus on improvements in palliative care to monitor and enable relief from distressing symptoms other than pain. Moreover, the results point to a need to improve

communication about death and dying. Educational interventions for health care professionals

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promoting enhanced wellbeing (i.e., symptom relief) and end-of-life discussions with residents are suggested for future research.

Acknowledgement

We thank the Swedish Register of Palliative Care for the delivery of the registry data.

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Palliative care in the final week of life of older people in nursing homes: a register-based study

Palliative care in the final week of life of older people in nursing homes: a register-based study

Palliativ vård under den sista levnadsveckan för äldre personer på

vård- och omsorgsboenden: en registerbaserad studie

Abstract

Sammanfattning

This thesis was based on the following article:

Contents

Introduction

Background

Aim

Method

Ethical considerations

Results

Discussion

Conclusion and implications

Acknowledgement

References