Decision-making in caring for people with dementia at the end of life in nursing homes.

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Decision-making in caring for people with dementia at the end of life in nursing homes Andrea Koppitz, Georg Bosshard, Stephanie Kipfer and Lorenz Imhof

Abstract

Background: Alleviating symptoms, fulfilling psychosocial needs, and the inclusion of family are among the criteria that determine care quality in palliative treatment. The care quality is especially inadequate for people with dementia (PwD) at the end of life. To improve this, it is necessary to understand the process of nurses’ clinical decision-making in symptom management in the terminal phase of PwD. Aim: The aim of the study was to examine the decision-making process of symptom management for PwD in nursing homes in their terminal phase of life. Design: A qualitative design was chosen with a constructivist approach. Individual interviews were conducted with nurses (n=32) in four Swiss nursing homes. Results: ‘Recount and reflect’ plays a vital role in the care of PwD in terminal phase, enabling symptom recognition and facilitating symptom management. A process of thinking during the course of action enables nursing staff members to understand what, when, and how symptom changes have taken place. Conclusion: Highly-trained nurses need to support health care assistants through counselling, coaching, and leadership to help reduce the symptom burden experienced by PwD. Relatives are necessary to maintain an exchange of ideas regarding the appropriate treatment to reduce symptom burden. Key words: l Palliative care l Dementia l Nursing homes l Terminal care l Decision-making This article has been subject to double-blind peer review.

Andrea Koppitz, Deputy Head of Nursing Research and Development, Institute of Nursing, Zurich University of Applied Sciences, Switzerland; Georg Bosshard, Long Term Care Physician, University Hospital of Zurich, Clinic for Geriatric Medicine, and Centre on Ageing and Mobility, University of Zurich; Stephanie Kipfer, Research Associate, Haute École De Santé, Health Department, Fribourg, Switzerland; Lorenz Imhof, Head of Nursing Research and Development, Institute of Nursing, Zurich University of Applied Sciences Correspondence to: [email protected]

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priority (WHO, 2002; 2011). Both of these aspects of care, along with the inclusion of family, are criteria for care quality in palliative treatment (Eychmüller et al, 2009; Radbruch and Payne, 2009; 2010; van der Steen et al, 2014). In their everyday life, PwD do not always receive optimal care. It is especially inadequate at the end of life (Aminoff and Adunsky, 2004; 2006; van der Steen, 2010; 2014; Sampson et al, 2015). To improve the quality level of care, there is a need to understand the process of nurses’ clinical decision-making in symptom management in the terminal phase of PwD. Consequently, the following research question was examined in this study: How do nurses make decisions regarding symptom relief in nursing home residents with dementia during the terminal phase?

Methods The research reported in this paper was part of a larger, two-phase, retrospective, descriptive study named ‘The Pallhome Study’. In stage one, a retrospective analysis of nursing records of 65 deceased people was carried out (Koppitz et al, 2015). The paper presents the findings from the

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eople with dementia (PwD) who spend most of the final year of their life in a nursing home (Mitchell et al, 2005; Houttekier et al, 2010; World Health Organization (WHO), 2011; Meeussen et al, 2012) often experience symptoms such as: dyspnoea, frequently in combination with respiratory infections, including pneumonia; pain; psychosocial distress; varying degrees of reduced mobility; impaired intake of food and fluids; and behavioural disorders (in particular agitation, restlessness, and disorientation) (Reynolds et al, 2002; Chang et al, 2005; Cervo et al, 2006; Fabbro et al, 2006; Roger, 2006; Wowchuk et al, 2006; Hughes et al, 2007; Di Giulio et al, 2008; Mitchell et al, 2009; Förstl et al, 2010; van der Steen, 2010). Several studies have referred to inadequate treatment of pain (Morrison and Siu, 2000; Goodman et al, 2010). It is often difficult for PwD to communicate their pain effectively, which can lead to inadequate pain assessment and treatment. PwD are hence regarded as exhibiting challenging behaviours (Husebo et al, 2011; Pieper et al, 2013). In the terminal phase, alleviating symptoms and fulfilling psychosocial needs should take

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second phase, where the authors conducted semistructured interviews with 32 nursing home staff that were responsible for symptom observation and pain interventions. To get an overall perspective of the symptoms experienced by PwD in Swiss nursing homes, the question ‘What symptoms do nursing homes record for PwD in their terminal phase and with what frequency?’ was answered in the first part of the study.

Design For the second part of the Pallhome Study, a qualitative design was chosen with a constructivist approach based on Charmaz (2006). This process allowed the authors to examine how, when, and why the nurses made decisions. Additionally, the analysis enabled the authors to focus on the social and psychological processes (Charmaz, 2014) that influenced decision-making. Specific research questions were developed in an iterative procedure. Theoretical sampling was employed to allow a wide range of experiences to be accessed. Analysis was conducted according to a standard protocol where codes were developed from the data, arranged into categories, and the links between them established to build theory to explain the decision-making by nurses. Reporting was made according to consolidated criteria for reporting qualitative research (COREQ) (Tong et al, 2007).

Setting The study was carried out at four Swiss nursing homes in the Canton of Zurich, Switzerland. The nursing homes had capacity for 471 residents. The nursing care for these residents was planned and administered by staff with a wide range of qualifications. Across Switzerland, assistant personnel represent the largest occupational group in nursing homes (42%) (Obsan, 2009), followed by nurses with tertiary-level education (27%), and nurses with secondary-level education (18%). Less than 1% of nursing member of staff have a university diploma, while 12% have no prior health care education (Obsan, 2009).


Sample The individual interviews were conducted with nursing staff members with tertiary, secondary, and assistant-level education. These staff members were all included in daily clinical decision-making due to their presence at the nursing homes. Inclusion criteria were: ●●Minimum age of 18 ●●Ability to communicate in German or Swiss German


●●Length of current employment of at least 1 year ●●Involvement in the care of individuals with dementia ●●Professional experience of at least five years. The study in its entirety was approved by the Cantonal Ethics Committee of Zurich (KEK— ZH-Nr. 2012-0196).

Data collection Using semi-structured individual interviews, the nurses were asked about the end-of-life phase and its associated decision-making processes in the nursing and care of PwD. The interviews lasted 53.5 minutes on average (SD±12.41).

❛The manner of observing behaviour differed based on the level of qualification of a specific nursing staff member.❜

Data analysis The interviews were analysed following the grounded theory approach (Creswell, 2007) according to Charmaz (2014) and managed using the Atlas.ti software program (Version 7.1.6) based on verbatim transcript records. The accuracy of these records was double-checked by the first and third author. Data analysis started as soon as the initial interviews were underway. The results were then used to inform ongoing investigation. Segments of texts, incidences, strategies and individuals were compared using the constant comparative method to delineate commonalities and differences (Charmaz, 2009; 2014). The analysis was split into two phases of coding: initial and focused. During initial coding, a data segment for the development of categories was coded line for line by the first author. To form the main categories, the central codes were discussed at least once every 4 weeks by two of the authors. During focused coding, attributes and relationships of the code were developed, thereby forming an explanatory model through a process of inductive reasoning (Charmaz, 2006). To ensure the credibility and quality of the analysis, memos were used to document the process (Creswell and Clark, 2007; Charmaz, 2014). Member-checking according to Charmaz (2006) was done with nursing home staff (n=8). Data analysis consistency was achieved by the consensus of all authors. The SPSS statistical software program (Version 20) was used to provide a descriptive analysis of the sociodemographic data of all participants (frequencies, central tendencies, standard deviations).

Results

Characteristics of the participants The nurses interviewed were highly experienced in the clinical field. For details of the study population, see Table 1.

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Table 1: Study population Characteristics (n=32)

M±SD

n

Age

43.7±11.56

32

Female

29

90.6

Registered nurses

18

56.2

Health care assistants with lower secondary level education

10

31.3

Vocationally-trained nurses

4

12.5

Years of professional experience

14.8±10.96

32

Length of current employment

5±4.73

32

Decision-making Decisions were triggered by the nurses’ early recognition of a behavioural change. During behavioural observation, nurses compared phenomena that were not comparable with others. This was done through intra- and interindividual exchanges with colleagues, family members, and physicians who helped with the decision-making. The process can be described as recounting and reflection. Influencing variables of the decision process were organisational factors, namely attitude of staff members and management, daily available time for each PwD, and infrastructure of the nursing home. The model of decision-making is shown in Figure 1.

Behaviour as trigger Nurses indicated that ‘the knowledge of how things had been up to now’ was a prerequisite for assessing whether a nursing phenomenon had changed, had become a care problem in need of treatment, or was completely new. The behavioural change, which can be the result of unmet needs, may be the onset of many unstable phases of the disease trajectory that can persist until the time of death.

Time allocated to individual residents

Change in behaviour of an already complex case

Attitude of staff members/ management

Infrastructure of nursing home

Include family members and physicians

Recount and reflect

Decision

Figure 1: Decision-making process 70

%

The highly complex nature of symptomfocused assessments of PwD was defined by a nuanced and detailed observation of muscle tone, facial expression, and gesture that were not just recognised by standardised assessment tools. One nurse described the following: ‘What is the facial expression, what’s the skin like? Yes, mostly the facial expression and that sort of thing. You assume [that you know them], you’ve known the people for so long … you aren’t really 100% sure, but you have the impression that the person is more relaxed than before’ Participant (P)2.

The manner of observing behaviour differed based on the level of qualification of a specific nursing staff member. Registered nurses described their observations in more nuanced fashion, incorporating potential decision-makers into their considerations. Their observations were used to inform their subsequent clinical decision: ‘The moment when you are deliberating what the patient presents, for example, a developing infection; possibly also knowing what someone would like to have or would not want at all … along with that is often—no, actually, most of the time, the inclusion of family to consider, the physician, what the signs are like and how they’re connected … when you make the decision’ P1. ‘Health care assistants with upper secondarylevel education described observations without making a connection to other observations, such as food intake. Most of the time, they don’t eat as much anymore, they only drink a little’ P5.

The nurses used different approaches to recognise the disease trajectory of PwD that related to their various levels of education. Symptom management in the terminal phase involved responding to inferred symptoms due to unmet needs of the person with dementia. The


❛Decisions were triggered by the nurses’ early recognition of a behavioural change.❜



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deciding factor in this process is clinical knowledge, i.e. the nurse’s experience and intuition: ‘We’ve had it prescribed, we have it in stock and at some point you start putting the patient on it, because you have the feeling that he’s in pain, isn’t breathing well anymore, or is unsettled and could be frightened for no reason’ P3.

Due to the increased cognitive impairment, the nurses’ assessment became more important, especially in the care of PwD in terminal phase. PwD still communicated, but in completely different ways, such as non-verbal communication or through a change in behaviour. Nurses recognised that decoding signs and symptoms required time and knowledge about the person, in order to interpret them in adequate manner: ‘Pain, that’s always such an issue. When is someone in pain? What kind of pain is it? Is that really physical pain? That’s actually really difficult to find out’ P2.

Decision-making process The changes in behaviour of PwD often led to reassessing decisions of nursing home staff. The uncertainty regarding unaccustomed behaviour in the person with dementia was the catalyst for reassessing the existing treatment. Participants always experienced unusual behaviour as problematic in those instances where they were unable to account for it. The nurse must first discover the reason for the behaviour, so that the situation in question can be better explained and t h e i n d i v i d u a l ’s i n f e r r e d n e e d s m o r e understandable. The process of developing knowledge about unmet needs was essential to the decision. One nurse described this process as:


‘It’s the issue or the calculation: is this restlessness, something going on inside the person, or is this pain?’ P1.

This decision process was characterised by ‘recount and reflect’, which did not take place in a single act, nor was it primarily characterised by the recognition of medical symptoms. What was characteristic was the interpretation of what had changed, when, and how. In addition, the nurse considered possible factors of influence and adapted to the situation of the person affected. During this process, it became apparent that there were uncertainty factors associated with the assessment due to the unpredictable course of disease:


‘ … to really just get to the bottom of what is bothering him. Is it pain? Is it something with the family? That also holds them back, particularly when there are conflicts, or sometimes problems, or family members that they’ve been expecting and who haven’t shown up’ P5.

Nurses appeared to come to terms with this inherent uncertainty when assessing situations by recounting and exchanging experiences with team members. They used the team’s body of experience as a resource:

❛Uncertainty regarding unaccustomed behaviour in the person with dementia was the catalyst for reassessing the existing treatment.❜

‘Then, I say, “How was it yesterday?” Or [pause] “I just saw this, what do you think?” If I can discuss it, it’s even better, naturally. Especially if I’m not sure’ P3.

‘Recount and reflect’ is influenced by members of the team who are selected to act as reference persons due to their clinical experience, skills, and professional knowledge. Reference persons are considered as trustworthy and having strong social skills. They also have many years of experience in caring for patients with dementia. The nurse is able to maintain an authentic exchange of information with the reference person. The reference person can set priorities and apply his or her knowledge according to the situation. Knowledge is generated through narrative interpretation and is available to all team members. There is also an emotional relief that takes place through the exchange of ideas: ‘She can point out other angles, she can tell me something like, “Hey, take it easy, take a deep breath, step back, and take another look at the situation.” She goes over the situation with me … takes another look from a different perspective … if I kind of hit the wall … then she can say to me, “Look, I’ve done it like this or like that in my experience with other people”’ P18.

Along with team reference persons and physicians, family members are the most important elements to maintaining an exchange of ideas. Decisions regarding the appropriate treatment to reduce the symptom burden are made collaboratively: ‘It’s a collaboration between family members, nurses, and physicians. Working together and discussing to figure out what’s best for them, in order to find the most appropriate solution. We determine at what point we should use opiates

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… when the time for them is right . [Pause] But of course, this means there has to be a very close and really good collaboration, especially with the physicians and the family members. That’s important’ P6.

together. The ability for the individuals to withdraw themselves and be undisturbed, stimulation, and interaction are factors that influence successful coexistence among residents and between residents and staff:

Clinical discussions as part of everyday routines are a crucial opportunity to exchange ideas and perceptions among nursing home staff to get an overall perspective of the health condition of the person with dementia. Only through such a narrative process can a proper course of action be implemented based on the careful assessment of the changes in the person’s condition. This recounting is of primary importance in the care of individuals with dementia in the terminal phase, as it provides—in such a complex and unstable situation—far more than the recognition of medical symptoms and the facilitation of symptom management. Implementation takes place at the point of the various negotiations when the process of interpretation is advanced enough for courses of action to be enacted. This transition to an implementation-ready state does not necessarily need to lead to a new, tangible action. Instead, it can entail maintaining a status quo, for example taking no action, discontinuing a procedure, or limiting the care to comfort and respect. A nurse described the consequences of ‘taking no action’ as follows:

‘[PwD] are together with others on the same floor, with other residents who don’t have dementia. Sometimes they [the PwD] disturb the others, because they’re loud. We’re loud when we have to communicate with them’ P26.

‘I always say that with dementia, there are things, especially with agitated people who constantly want to go home. Often there’s nothing you can do about that. The only thing you can do is endure the situation. And I think sometimes we just have to take that into the terminal phase, when someone is agitated or so fearful. We have to endure along with them’ P16.

Factors influencing the decision-making process The quality of the narrative interpretation is influenced by three significant contextual factors: ●●Infrastructure ●●Time allocated to individual residents ●●The attitude of the nurses and their managers towards the care of PwD. The term ‘nursing home infrastructure’ refers to the spatial, environmental conditions and the constraints often experienced within this setting that may have an effect on the behaviour and wellbeing of the people with or without dementia. The relationship between the structures, the natural environment, and the people living in them shapes the life lived

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To a large extent, it is through their attitude— expressed in the way they tend to and focus on the individual—that those caring for patients with dementia are able to make nuanced observations about extremely small changes in the person’s condition. Moreover, they enable the process of interpretation: ‘As soon as I enter the building, I have to slow myself down. I can’t be the same way I am outside of work, which is pretty much always a bit too fast’ P4.

The process of narrative interpretation requires time for exchanging ideas and for encounters between colleagues. It is necessary to have time available for individual reflection and for interaction with others. Advanced planning with regard to predicting the symptoms and behaviours of PwD is not really implemented. Clinical practice is characterised by phenomena and symptoms; therefore, the proper time and settled routines are necessary in order to react to unexpected events or to reflect back on events that have occurred: ‘With health care assistants, too … In order to also see how they assess it … But [reporting] twice a week really isn’t much’ P3.

Discussion The decision-making model that was developed with its core concept of ‘recount and reflect’ reveals what nursing home staff experienced as crucial to get symptom control in the care of PwD. This process of narrative interpretation is a major component in the recognition of medical symptoms (e.g. pain) and the support of symptom management in complex, unpredictable, and unstable situations involving PwD in their terminal phase.

Symptom interpretation These findings confirm the importance of using a person-directed approach in the decision-making


❛It is necessary to have time available for individual reflection and for interaction with others.❜



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process based on a holistic assessment of PwD that includes life story, family discussions, and clinical changes observed by nursing home staff (Benner, 1994; Benner et al, 1999; Kitwood et al, 2007; Marewski and Gigerenzer, 2012; McGreevy, 2015; Mullan and Sullivan, 2015). They also further validate the results of Singer et al (2015), who found that symptom control does not get better during the last 10 years of a patient’s life, unless their medical condition improves. Narrative interpretation can be defined as a superior standard in the decision-making affecting PwD at the end of life. It involves the reduction of a multiplicity of information after using all available information through sound data collection on the part of health professionals. Insights are then exchanged, so that when the health professional is presented with a relevant change in behaviour, he or she initiates an intervention that is perceived as the most appropriate for the situation at hand. Rather than an ideal solution, the best suited to the current situation is sought (Benner, 1994). The instability and complexity of symptoms, which, according to Grünig (2011), act as indicators for palliative care in Switzerland, take on a different meaning in treatment for PwD. In the cases of individuals with advanced dementia, the complexity is primarily characterised by restricted verbal communication to express needs. As a consequence, the unmet needs of PwD lead to challenges in assessing symptoms by health care assistants. Hubbard et al (2002) stress the importance of interpreting non-verbal signs when dealing with PwD. This process of interpretation is carried out through the participation of reference persons, the nursing home staff, physicians and family members.


Context factors influencing interpretation Regan et al (2014) also emphasise the importance of communication and frequent, recurring assessments. The assessments require a great amount of effort, time and energy, because conclusions regarding the symptoms can only be reached indirectly by means of behaviour, facial expressions and gestures. Consequently, the focus of the nurse is primarily on the observation of behaviour and only secondarily on medical symptoms, such as pain (Humphreys et al, 2014). Time, increased knowledge and clinical expertise are therefore a prerequisite of a holistic assessment for PwD. Nurses are attuned to the implicit interactions and communications with PwD. The exchange of ideas and the interpretation of what and how changes have


occurred are pivotal. This allows to better address the ambiguity that may surround certain symptoms. Through this exchange of ideas, nursing home staff recognise their limitations and seek assistance from team colleagues who are more clinically experienced. The exchange makes it possible for the implicit to become explicit. The dynamic of a change, the nurses’ attitude, and their thoughts can be expressed. The nurses’ actions are based on the situation, not on the fact that they have perceived a medical problem, for example, dyspnoea. Observing the situation absorbs the majority of the nurses’ attention. Therefore, observation and assessment are not likely to be carried out with standardised instruments. Standards of care cannot replace the clinical experience and knowledge of health professionals (Hamric et al, 2009).

❛In addition, nursing homes that specialise in dementia care should be studied separately from those that do not ... ❜

Collective learning The exchange of ideas facilitates collective learning, which is not always possible with a case conference approach (Reuther et al, 2012). While a case conference may be an excellent method to collect facts and arrange or rearrange symptom relationships and signs, it does not allow people to practise thinking in action, which enables nurses to identify the specific and universal aspects of a situation simultaneously. Particularly, in the context of a nursing home with low resources in personnel with tertiary education, collective learning during daily routines across all staff levels can be an important criterion for the transfer of knowledge to the setting of care delivery. The collective learning smoothes the way for the individual and the group to expand their experiential knowledge (Benner et al, 1999). The crucial task of tertiary-level staff is to disseminate their knowledge to other levels of staff in their team. The potential for exchanging information is also of central importance for nursing home staff in terms of collaboration beyond the borders of their institution. Due to improved options for home care delivery, admissions to nursing homes are taking place ever later in life, even for those with dementia. The nurses interviewed emphasised how essential it was to their nuanced observation to know a patient well and over a long period of time. With expanding options for home care, this acquaintance period will continue to contract in the future. As a consequence of the person with dementia being admitted into nursing homes much later in their disease trajectory, the opportunity of getting to know them is reduced, while the importance of knowing their overall life story and involving

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their family is simultaneously increased. The results of this study highlight the need to foster further development of the communication process in support of recounting during reporting and between family and reference persons or community health agencies. Along with possibilities for learning and exchanging information, the complexity and instability inherent to the care of PwD in terminal phase call for the expertise of welltrained and experienced nurses (Hamric et al, 2009). This is because the need is not only the ability to perceive, but also the situationally appropriate application and implementation of clinical knowledge. Engaging health professionals holding a master’s degree (Hamric et al, 2009) is a topic of international interest and its benefit to long-term institutional care has been well documented (Donald et al, 2013). Therefore, high-level nurse education is necessary to have a significant effect on clinical practice in nursing homes. In this respect, it is important that the specialised nurses be active in the delivery of fundamental care, as opposed to external specialised teams intended to involve the nurses on an as-needed basis. It is debatable whether external specialised palliative care professionals can fulfil the criterion identified by the nurses interviewed, namely ‘I must know the person’. In the process of improving palliative care skills in nursing homes, it is necessary to increase the expertise of nurses within the setting, because of the uncertainty as to whether or not health professionals from outside the nursing home can really know the PwD. This awareness is, however, crucial for symptom management, because it sets in motion the process of interpretation. For this reason, future research could examine the use of advanced practice nurses (APNs) (Donald et al, 2013), as it relates to the further development of narrative interpretive skills. Such reference persons, with their direct tie to hands-on, routine, clinical nursing, play a paramount role. While external experts who are present for case conferences and reports can be a valuable resource, they are not integrated into hands-on, routine nursing procedures. APNs as nursing home team members would be particularly well-suited to act as reference persons in teams and provide crucial impetus in symptom management.

Limitations The majority of nursing home residents with dementia are cared for by nurses with secondary or assistant-level training. For this reason, future

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research should include more interviews with these professional caregivers to better illustrate their experience. In addition, nursing homes that specialise in dementia care should be studied separately from those that do not, as the decisionmaking processes may be configured differently.

Conclusion Nursing home staff need opportunities for collective learning and exchanging ideas to expand their theoretical and empirical knowledge based on reflection and dissemination. This provides them with a holistic view of PwD informed by all team members. Every staff member has the opportunity to make a significant contribution to the assessment process. To reduce symptom burden, highly trained nurses are needed to support nursing home staff in symptom management through counselling, coaching and leadership. The decisive factor in symptom recognition and interpretation is the nurse, since only he or she can validate and prioritise the symptoms to alleviate suffering 24/7. Knowledge, broad clinical experience, collaboration with family members and physicians and, above all, time are required to fully appreciate the range of symptoms in its complexity. Conflicts of interest The authors have no conflicts of interest to declare Aminoff BZ, Adunsky A (2004) Dying dementia patients: too much suffering, too little palliation. Am J Alzheimers Dis Other Demen 19(4): 243–7 Aminoff BZ, Adunsky A (2006) Their last 6 months: suffering and survival of end-stage dementia patients. Age Ageing 35(6): 597–601 Benner P (1994) The role of articulation in understanding practice and experience as source of knowledge. In: Taylor C, Tully J, Weinstock DM (eds) Philosophy in an Age of Pluralism: The Philosophy of Charles Taylor in Question. Cambridge University Preas, Cambridge Benner P, Hooper-Kyriakidis P, Stannard D (1999) Thinkingin-action and reasoning-in-transition: an overview. In: Stannard D (ed) Clinical Wisdom and Interventions in Acute Critical Care: A Thinking-in-Action Approach. WB Saunders, Philadelphia PA Cervo FA, Bryan L, Farber S (2006) To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision-making process. Geriatrics 61(6): 30–5 Chang E, Hancock K, Harrison K et al (2005) Palliative care for end-stage dementia: a discussion of the implications for education of health care professionals. Nurse Educ Today 25(4): 326–32 Charmaz K (2006) Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. 1st edn. Sage, Los Angeles CA Charmaz K (2009) Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. 2nd edn. Sage, Los Angeles CA Charmaz K (2014) Constructing Grounded Theory. Sage, London Creswell J (2007) Qualitative Inquiry and Research Designs.


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❛While external experts who are present ... can be a valuable resource, they are not integrated into hands-on, routine nursing procedures.❜


Call for papers Is there a subject you would like to see covered in the International Journal of Palliative Nursing? The journal invites submissions on all aspects of palliative nursing care. We would particularly welcome reviews of clinical management issues, non-cancer diagnoses, and commentary or discussion pieces. If you have any queries or questions regarding submitting an article to the journal, please contact the Editor: [email protected]


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Caring for people with dementia and challenging behaviors in nursing homes: A needs assessment geriatric nursing.

Communication with Residents and Families in Nursing Homes at the End of Life.

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes.

Palliative and end of life care for people with dementia.

Drug treatment at the end of life: an epidemiologic study in nursing homes.

Caring for people who are dying: priorities at the end of life.

Dignity and care for people with dementia living in nursing homes.

Needs of people with severe dementia at the end-of-life: a systematic review.

Digital life storybooks for people with dementia living in care homes: an evaluation.

Direct costs of dementia in nursing homes.

Predictors of self- and caregiver-rated quality of life for people with dementia living in the community and in nursing homes in northern Taiwan.

End-of-Life Care in Nursing Homes with Greater versus Less Palliative Care Knowledge and Practice.

A new model for end-of-life care in nursing homes.

Quality of life in people with cognitive impairment: nursing homes versus home care.

How individuals with dementia in nursing homes maintain their dignity through life storytelling - a case study.

Pain Intervention for people with Dementia in nursing homes (PID): study protocol for a quasi-experimental nurse intervention.

Living with and caring for patients with Alzheimer's disease in nursing homes.

Difficulties in caring for a patient with cancer at the end of life at home and complicated grief.

Structural characteristics of specialised living units for people with dementia: a cross-sectional study in German nursing homes.

Palliative and end of life care for people with dementia: lessons for clinical commissioners.

Making decisions at the end of life when caring for a person with dementia: a literature review to explore the potential use of heuristics in difficult decision-making.

Assessing the application of non-pharmacological interventions for people with dementia in German nursing homes: feasibility and content validity of the dementia care questionnaire (DemCare-Q).

[Cognitive stimulation and music intervention for people with dementia in nursing homes: A pilot study, problems and perspectives].

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.