Exploring Palliative Care Nurses’ Ethical Dilemmas

Contents Page

1.0 Introduction

2.0 Background and Rationale

3.0 Search Strategy

4.0 Literature review: Emergent themes

4.1 Nurses’ experiences towards decision making

4.2 The perception of hastening death

5.0 Impact of Key Findings

6.0 Conclusion

References

Bibliography

Appendix

1.0 Introduction

The aim of this literature review is to explore national and international research studies pertinent to ethical dilemmas experienced by Palliative Care (PC) nurses when caring for patients requiring Palliative Sedation (PS) at the end-of-life stage. The review starts with a contextual background and a rationale followed by a search strategy outlining the key words used in the search process, as well as outlining the databases and the time period covered with its justification. The identification and selection of the emergent themes emanating from the literature are then provided, highlighting key findings and the studies methodological strengths and limitations. A discussion of the key findings is presented and considerations on the impact or changes to nurses’ practice within palliative care settings are identified. To conclude a summary and reflective account are provided, and suggestions are made for consideration of future research and practice development.

2.0 Background and Rationale

480 000 people die in England every year, with an estimated increase of 550 000 by 2035 (DoH, 2015). NHS England (2014) estimated that each year approximately 170 000 people receive specialist PC.  In 2008 the DoH published its ‘End of Life Care Strategy’ which set out to recognise the needs of terminally ill individuals to provide a ‘good death’. Individuals’ needs were identified as being: surrounded by family in familiar surroundings in a place of their choice, treated with dignity and respect, their wishes acted upon at the right time, and being without pain and other symptoms involving specialised services and practitioners (DoH, 2008, 2015). Patients’ who require interventions for refractory symptoms, need to be surrounded by a multidisciplinary team and all aspects of their suffering need to have been explored before PS can be considered. The term ‘refractory symptoms’ refers to symptoms which cannot be alleviated despite extensive efforts to find a therapy that is tolerated and which does not compromise patients’ awareness and responsiveness (Cherny, 2014). Moral, legal and ethical issues need to be contemplated when patients reach end of life stage (Nunn, 2010).

Over the past two decades PS has remained a controversial and much debated topic in PC. The World Health Organisation (2017) defines PC as being a practice which aims to improve the quality of life of terminally ill patients and their families, putting into place a system of support to alleviate their psychosocial, physical or spiritual suffering. The European Association for Palliative Care (EAPC, 2009) recognises that in order to lessen the burden of refractory symptoms and distress, PS has been an approach which is essential and significant in the case of selected patients who are terminally ill. In this context PS is described as an ethically acceptable therapeutic intervention by patients, families and health-care workers to decrease the patients’ consciousness in order to relieve them from intractable suffering (EAPC, 2009). Nurses are at the forefront of patient care and play and a key role in palliative and hospice care (Dobrina, 2014).  Whilst caring for patients at the end of life, nurses are faced with decision-making dilemmas and emotional burden, and for some this including the belief that PS is hastening patients’ death (Morita, 2004).

3.0 Search strategy

This literature review was intended to look at the experiences of PC nurses working in hospice settings, however due to the paucity of research available, the search was extended to nurses working in other PC settings.  An electronic search of the following key words was conducted : ‘Palliative sedation’, ‘nurses’, ‘end of life’, ‘hospice’, ‘ethical dilemmas’ and ‘palliative care’. These terms were used singularly and / or in combination with the purpose of accessing relevant literature. The databases accessed were ‘CINAHL’ which yielded 11 relevant articles, including two systematic reviews.  ‘Medline’ yelded 4 relevant articles including two qualitative studies, ‘Pubmed’ yielded 7 relevant articles including one audit review and five qualitative studies, ‘Internurse’ produced 1 triangulated study and one systematic review and the Cochrane Library which produced one systematic review. Only the availability of ‘Full text’ was requested from these databases. Professional website such as NICE, Department of Health (DoH) and the World health Organisation (WHO) were also used to strengthen the outcome of the search strategy. Manual search of references used in texts was also completed. In order to focus on contemporary evidence based information, the search time parameter used was between 2007 and 2017. The search extended to international literature due to the paucity of research carried out in the United Kingdom (UK) and only included research printed in the English language. This strategy allowed for a comparison of the studies carried out in the UK and abroad, and the plausibility of the transferability of the findings. The results yielded from the databases can be seen in Appendix 1.

An inclusion and exclusion search criteria of the literature was identified and included in Table 1.

Table 1. Search Inclusion and Exclusion Criteria

Search Inclusion Criteria	Search Exclusion Criteria
Literature available within search time parameter 2007-2017.	Literature which fell outside the stated search parameter.
Literature and clinical guidelines from professional website such as NICE. Evidence-based literature: peer reviewed articles/studies, systematic reviews.	Non evidence-based documents such as social networks, media websites, blogs and non clinical articles.
Studies and articles written and/or transcribed in English.	Studies and articles written in a non-English language which has not been transcribed.
Evidence relating to the chosen topic which relates to adults at the end of life.	Evidence relating to the chosen topic which relates to children at the end of life.
Reputable newspapers such as the Times/the Observer/The Telegraph. DoH white papers.	Non reputable news papers such as the Sun/Daily Mirror, social media apps and websites.

4.0 Literature review: Emergent themes

A number of key issues relating to the ethical dilemmas experienced by PC nurses when dealing with PS were identified when searching for relevant literature for this review. The most prominent areas were the aspect of nurses’ experiences towards decision making and communication; administration or withdrawal of hydration and nutrition to sedated patients; the awareness of life expectancy and the perception of hastening death, and the questioning of deep sedation being similar to slow euthanasia. The two most recurrent themes emerging from the literature are namely:

• Nurses’ experiences towards decision making
• Nurses’ perception of hastening death

A total of five studies will be critically appraised, incorporating the research methodology strengths and limitations.

4.1 Nurses’ experiences towards decision making

Palliative sedation has had a gradual acceptance as a form of therapy within palliative care settings. It is often used as the last resort to ease intractable suffering in terminally ill patients’. However its practice has been identified as contributing to nurses’ emotional burden due to the fact that they are at the centre of patients’ care, managing patients’, families and members of the multidisciplinary team’s expectations (Morita, 2004; Claessens, 2007; Abarshi, 2014).  This is corroborated by De Vries and Plaskota (2017) who conducted a study, using a phenomenological data collection, which investigated with depth the participants’ opinions of their lived experiences (Aveyard, 2014, p.62), through an interview process. Nurses’ experiences were transcribed using and interpretative approach. For the purpose of this study, the researchers explored the experiences of nurses working in a hospice setting when attempting to control terminal restlessness by administering PS. The researchers used a purposive sampling method by approaching 20 nurses from a hospice, in the south of England, however only 7 (n=7) responded. All respondents were female and aged between 24 to 62, with a median of forty three years. The participants had worked in PC between 7 months and 8 years. Semi-structured interviews were carried out to gain information relating to participants experiences of administering PS. A period of one year was set for the recall of specific occurrences. A total of seven interviews were carried out until saturation was confirmed. Polit and Beck (2010, p. 79) describe the effect of saturation as a theme becoming redundant as no further information can be made available by the data collected. The survey’s result was then analysed by the researchers and four chosen colleagues. Colaizzi’s method of analysis was used in order to develop themes and de Witt and Ploeg (2006) framework was followed in order to reach a high level of rigour. The study had been ethically approved by the hospice research and the hospital ethics committees, and consent from participants was sought prior each interview. Participants declined to comments on the transcripts of emerging themes.  The key findings indicated two emergent themes, the need to facilitate a ‘peaceful death’ and decision making incorporating the burden of emotional and ethical dilemmas. When trying to manage terminal restlessness, the nurses’ goal was for the patient to achieve a state of peace, comfort and calm. Nonetheless in order to achieve this status, nurses have to be able to deal with and assume the decisions that they have taken. Respondents have raised concern such as deciding which medication to administer and when to start sedation, as well as the uncertainty of having caused the patient’s death. Dealing with young patients’ and the expectations of families also caused emotional distress, and the support from other members of staff was deemed essential.

The leading methodological strength of this study was its phenomenological design which allowed rich and in depth understanding of the lived experiences of this group of PC nurses (Aveyard, 2014, p.62). Conversely, the investigators also indicated this as a weakness as it only integrated nurses from one hospice premises, thus reflecting the inability to generalise their findings. Further limitation to the methodology of this study is the susceptibility of researchers’ bias (Coombes, L. et al., 2009, p202). Moule and Heck (2011, p. 104) state that in order to measure the trustworthiness and ensure rigour in qualitative research, an interpretation of the findings must be reliable and auditable, however, this study only presented a quick overview of the questions asked and only a selected few answers, and participants declined to comment on the transcript and the evolving themes.

Inghelbrecht et al. (2009) demonstrated that nurses with strong religious beliefs were more likely to disapprove of euthanasia, however their attitude changed when they were dealing with refractory symptoms and withdrawing life sustaining treatments. This is substantiated by Gielen et al. (2012) secondary analysis of a quantitative study which focused on Flemish PC nurses’ attitudes towards PS taking into account world views, religion and demographic variables. PC nurses were asked to voice their views on treatment decisions when dealing with patients with advanced disease, thus includingPS. This survey was delivered pre establishment of the 2010 guidelines brought by the Flemish Palliative Care Federation. It was sent to Flemish PC nurses (n=589) and was presented as an anonymous self administered questionnaire of 69 statements. A total of 70.5% (n=415) questionnaires were returned. 88.2% (n=366) were female and 11.8% (n=49) were male respondents, with a mean age of 43.6. The mean number of years of PC experiences was 5.9. A latent class analysis, using the PoLCA-package, was performed by the researchers on the ten statements providing information on PS, which allowed clustering of nurses’ stand towards PS. The results indicated that the majority of nurses advocated for deep and continuous sedation. The researchers acknowledged that religion, world views or demographic components had no causal effect on the attitude of PC nurses towards PS; however they also acknowledged these results are only representative to this specific group of specialist nurses.

The main methodological strength of this study is produced by its design as it utilises mechanisms to maximise validity and precision and minimise biases when dealing principally with cause probing enquiry (Polit and Beck, 2010, p16, 222).  An added strength is the large geographical area covered by the survey which emphasizes generalisability of findings, and the honest opinions of participants are sought through the process of anonymity (Moule and Heck, 2011, p112). The study limitations are inclusive of the data being collected pre PS guidelines implementation in 2010, and may not be relevant to current practice and ideology, which is acknowledged by the researchers. A further limitation attributed to the study is the length of the questionnaire which required 69 answers, but only 10 were pertinent to PS. Bryman (2012, p.271) also indicated that key terms in surveys can be misinterpreted and that recollection of events could be misremembered. He also expressed that people’s expression of their behaviour and the way they behave could be contrasting.

When considering starting PS a multidisciplinary approach is generally considered and sedation is only started when alternative symptom control has been exhausted. Furthermore Cherny (2014) stated that when the decision to start PS is delegated, the individual making the decision to start the initiation of the treatment has been fully informed of alternative treatments, risks and benefits, and contact is encouraged with local PC experts when knowledge is limited. Arevalo et al. (2013) conducted a cross-sectional study which aimed to explore nurses’ experiences through decision making and accomplishment of continuous PS in terminally ill patients taking into account the settings of PS initiation. The investigators used a structured questionnaire which was piloted amongst nurses and the final version was sent detailing the objective of the survey and the anonymous data-analysis. The data was then analysed using the SPSS PASW 17.02. Respondents were required to provide information on the last patient to which they had administered PS, their knowledge on Dutch guidelines regarding PS and general demographic information. Questionnaires were sent to seven hospitals, ten units of PC in hospices or nursing homes and six home care organisations.  A total of 576 questionnaires were sent with a total of 48.09% returned (n=277). Respondents were mostly female (n=246), with a mean age of 40.14 and average experience of 17years.  The key findings indicated that nurses’ experiences differed depending on care settings. Nurses were more likely to participate in decision making in a hospital environment as opposed to home setting where nurses felt less involved in decision making and did not consult as often with other nurses or physicians during the course of PS.  They indicated that most of the nurses were in agreement with physicians with the indication of PS and that the discussion was usually initiated by physicians. Nurses appear to carry much of the responsibility during initiation and monitoring of PS and were mostly present at the start of sedation oppose to physicians. A need to increase nurses’ participation in decision making in PS has been recommended in order to improve patients care.

A key strength of this study is the use of a cross sectional survey which has collected data from a large number of participants. These surveys are used to measure activities at one point in time, they are relatively cost effective and the data collected is easily coded (Bowling, 2014, p. 217).  A further strength is the fact that a draft of the questionnaire had been tested in a pilot study with nurses in order to seek validity and reliability (Moule and Heck, 2011, p. 30). The first limitation of this study is the fact that nurses had been selected from only one geographical area in the Netherlands, furthermore random sampling of nurses working in PC institutions had not been possible, also causal relationship cannot be confirmed due to variables being collected simultaneously (Bryman, 2012, p.59) consequently the results of the survey cannot be generalised to the total population of nurses working in PC.

4.2 The perception of hastening death

Kirk and Mahon (2010) reported that the belief that PS hastens death is often the reason why there is reluctance for its use. They also expressed that it did not impact on patients’ survival rate. Additionally Cherny (2014) and Maltoni (2013) stated that the degree of sedation when administered appropriately and progressively did not hasten patients’ death. However this does not reflects nurses’ point of view in Inghelbrecht et al (2011) quantitative hermeneutic study, where the majority of nurses surveyed believed that Continuous Deep Sedation (CDS) is used to shorten life. Within this study CDS is used to control refractory symptoms when patients are reaching end of life. The objective was to investigate nurses’ involvement and attitudes toward decisions made at the end of life and the likelihood or definite life shortening effect of CDS. Participants had to recall their last experience within the past twelve months.  Questionnaires were sent to a convenience sample of 1678 Flemish nurses; these nurses had previously been identified in a prior survey regarding CDS administration. The response rate was 75.8% (n=1265), only 250 respondent fitted the criteria. The majority of nurses worked in hospital (n=161), then home care (n=46) and finally nursing homes (n=43).  Most were female with an average age of 41.9 with a mean age of 8.  56.8% (n=142) had a baccalaureate degree and 42% (n=105) had a diploma or associate degree. Confidentiality was assured by the processing of data anonymously, and ethical approval had been granted by the ethic committee of the University hospital of Vrije University Brussel. The questionnaire was explored for its reliability and validity by an in depth discussion with a focus group and a pilot was sent to 20 nurses. The results were presented as descriptive statistics and the data analysed using SPSS 17. The researchers found that communication pre sedation took place mainly between the nurses and relatives (n=131). A joint decision to start CDS was only discussed between nurses and doctors in 23.4% (n=57) of cases, and the cooperation between doctors and nurses was evaluated as positive. 76.8% (n=192) of nurses expressed that CDS was used with intent or was explicitly used to shorten life, and 95% (n=137) found that CDS possibly hastened death. The latter statement has been contested by numerous studies and the researchers also indicated that the nurses could be overestimating the effect CDS. The primary methodological strength of this study is in its design as it allows for a large sample and responses which could promote the generalisability of the findings; however the investigators also acknowledged that this may only be representative to the practice in Flanders and not to other regions or countries.  The main methodological limitation of this study is the use of convenience sampling which Moule and Hek (2011, p.95) indicate as being the weakest as it may introduce bias. The researchers also highlighted selection bias due to leading questioning regarding experiences of CDS and the perception of hastening death (Bowling, 2014, p.312).

PS has been reported to be a common treatment for the management of psychological and existential distress when terminally ill patient reach the end of life stage. Nonetheless, it is viewed as controversial as it is difficult to prove that the symptom is refractory and none reversible by using complementary therapies or support, furthermore it does not indicate physiological decline (Maltoni, M. et al., 2012, Cherny (2014). Rietjens et al (2007) conducted a qualitative study aiming to explore nurses’ attitudes and experiences towards PS, why it was used, their perceptions of PS and how it affects end of life. A total of 16 nurses with PS experience were recruited from a hospital following a short presentation from the investigators. 10 participants were working in the PC unit and the other 6 participants were working in the Medical Intensive Care Unit. Their participation was voluntary with no financial reward and consent was acquired via a signed consent form. The study had been approved by the hospital and the university review board. The majority of the participants were female (n=15) with a mean age of 38. They were mostly white (n=13) and 10 of them had worked in intensive or PC for more than five years. Most participants (n=14) reported having religious beliefs and they indicated that religion was important to support them at work. A pilot of the interview was previously carried out and subsequently small changes were made to the order and formulation of the questions. Interviews lasted on average 45 minutes, the first part of the interview collected background data using close-ended questions and the second part used semi- structured interviews with open-ended questions about the most memorable experience of PS they have had. The interviews were audio-taped, transcribed verbatim and analysed using QSR NUD*IST software. The key findings indicated that half of the participants reported to have used PS to relieve non-physical symptoms but that they struggled with its use, feeling that it was outside their expertise. Participants’ perspective on PS ranged from the beliefs that PS did not accelerate death, others thought that it did but it enabled them to relieve patients’ discomfort and some felt that this practice was nearing euthanasia, the latter being mostly revealed by nurses with limited experience. Most nurses expressed that PS contributed positively to the dying process. A key methodological strength of the investigation is in its purpose sampling and in its small sample size which allows for rich data to be collected during in depth interviews (Coombes et al 2009, p. 201, Aveyard, 2014, p.126-127). Although the findings cannot be generalised, they could be transferrable to a different setting (Anderson, 2010). A further strength of this study is the main researcher’s experience and qualification which allows for increase credibility (Polit and Beck, 2010, p504), Dr Rietjens completed her PhD in End-of –life decision-making in 2006 and had previously co-published studies on PS and euthanasia. Methodological limitations of this study include the recall time of memories which could lead to memory bias as information are more reliable when using a shorter time frame (Bowling, 2014, p.320). Bias may also occur by the subjective nature of in-depth interviews (Coombes et al. 2009, p.203)

5.0 Impact of Key Findings

This literature review has mainly explored literature from European countries and the data collected has predominantly been from quantitative hermeneutic phenomenological studies with purposive sampling.

Own practice, provide guidelines on palliative sedation practice, especially when new staff or as teaching tool for nursing students (see Dean, 2014, St Francis hospice guidelines)

6.0 Conclusion

There is a paucity of studies carried out in the UK and worldwide on nurses working in end of life care and the ethical dilemmas that they are faced on a daily basis.

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Appendix 1

Search Strategy summary

Search terms/key words used: Palliative sedation, end of life, nurse, hospice, ethical dilemmas.

Databases	Potential citations			Types of literature	Relevant citations used
	UK	Europe	Global
CINAHL		1   +4	1   +4	2 systematic reviews,
Medline	1		1   +2	2 qualitative studies
Pubmed		6	+1	1 review, 5 qualitative studies
NICE	2			2 guidelines
Internurse	1   +1	1		1triangulated study, 1 review	2
Cochrane Systematic reviews	1			1 systematic review
Grey literature/   Manual search	2   +4		+5	2 DoH guidelines,

Appendix 2

Analytical summaries of studies exploring palliative care nurses’ ethical dilemmas when dealing with palliative sedation (2007-2017)

Title, author, source,   Country of origin	Area of focus	Study design/   approach	Method (s) of data collection and Analysis	Key findings	Methodological strength and limitations	Relevance to own practice
Ethical dilemmas faced by hospice nurses when administering palliative sedation to patients with terminal cancer   Kay de Vries and Marek Plaskota Palliative and Supportive Care (2017), 15, pp.148-157. UK	Research study aiming to understand the ethical dilemmas experienced by hospice nurses when administering palliative sedation to manage terminal restlessness.	A qualitative study using a phenomenological approach.	Semi-structured interviews with a purposive sampling of 7 hospice nurses.   An interpretative approach used to examine subjective experiences of nurses. Prompts used to probe about types of medication and administrative practice 20 nurses were invited to take part in study, but only 7 replied (n=7).	When dealing with palliative sedation, hospice nurses main aim is to facilitate a peaceful death, however ethical dilemmas occurred when deciding which drug is to be administered, and a believe that sedation may hasten death. Decision making, emotional and ethical support were issues highlighted by nurses.	The methodology strength allowed the study to go to saturation. Small sample size to collect in-depth information.   Limitation: research carried out in only one hospice setting, findings may not be true to other hospice or palliative settings within the area or the country. Study could be bias due to the unavailability of research questions and answers and participants declining to check transcription.	Hospice nurses aim to reach a therapeutic level of sedation when patients are experiencing refractory symptoms.   A multidisciplinary approach is necessary in order to eliminate psychological, psychosocial and physical symptoms, thus in turn providing support to nurses when making decisions about sedation.

Title, author, source, Country of origin	Area of focus	Study design/ approach	Method (s) of data collection and Analysis	Key findings	Methodological strength and limitations	Relevance to own practice
Flemish palliative-care nurses’ attitudes to palliative sedation: A quantitative study Gielin, J., Van den Braden, S., Van lersel, T. and Broeckaert, B. Nursing Ethics (2012), Vol19 (5), pp. 692-704 Belgium	The aim of the study was to identify the palliative care nurses’ ethical attitudes towards palliative sedation, taking into consideration the influence of religion, world views and demographic variables.	Quantitative design used.	Retrospective analysis of a survey carried out on a large number of palliative care nurses (n=415) in 2006 working in Flemish palliative care institutions. The questionnaire was divided in three parts: -demographic information -religion/world views -attitudinal statements using a five point Likert scale.	The attitudes of Flemish palliative care nurses and the practice of PS administration are in agreement as to when to start palliative sedation. They agree that administration of artificial nutrition and hydration is of no benefit to patients who are receiving PS, and that patients should be involved or have consented to the use of continuous deep sedation.	Limitation: the original survey did not only focus on PS and was very long. There is also no indication of the time limit nurses had to recall their experiences. Survey carried out before national guidelines established in 2010 and its methodology adapted to researchers question, and therefore are its results valid today. Strength: Large number of respondent to the survey within the region, which demonstrates the general consensus within the locality.	Findings of this study are relevant to current practice as: administration of artificial hydration and nutrition is not current practice or advised when patients are being administered PS. The decision to start PS is always discussed with patients to gain their consent when able, and also discussion takes place with family members.

Title, author, source, Country of origin	Area of focus	Study design/ approach	Method (s) of data collection and Analysis	Key findings	Methodological strength and limitations	Relevance to own practice
Day-to-day care in palliative sedation: Survey of nurses’ experiences with decision-making and performance Arevalo, J., Rietjens, J., Swart, S., Perez, R., and van de Heide, A. International Journal of Nursing Studies (2013), Vol: 50 Netherlands	Explain nurses’ experiences of decision making and achievement of palliative sedation in patients who are terminally ill.	Cross-sectional study	Structured questionnaire sent to nurses in palliative care units in nursing homes, home care organizations, hospitals and hospices in-patient unit in the Netherlands.	Nurses play an important role when continuous palliative sedation is used, however their input vary depending of the establishments they are working in. Nurses were less involved in the decision making progress in the home settings as opposed to hospital settings where the nurses were included in team discussions.	Limitation: sample not random (chosen establishments in two areas of the Netherlands). Some Strength: data can be obtained rapidly from a large number of respondents in a large geographical area. It is relatively low cost and easily collected anonymously.	Relays the significance of multidisciplinary team working together and the Importance of the nurses’ input when

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Title, author, source, Country of origin

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Method (s) of data collection and Analysis

Key findings

Methodological strength and limitations

Relevance to own practice