Research
Nurses’ perceptions of proactive palliative care: a Dutch focus group study Els ML Verschuur, Marieke M Groot, Rob van der Sande
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or most terminally ill people, it is important to have information about what to expect in the last phase of life and to be able to influence their place of care and place of death. The proper moment to discuss wishes and needs in the last phase of life is difficult to determine. One reason for this is that it is hard for health professionals to predict life expectancy (Fitzsimons et al, 2007; Glare et al, 2008). Moreover, health professionals do not want to strip the patient of all hope. Furthermore, patients and relatives sometimes exert considerable pressure on professionals not to ‘give up’ on the patient. Although most patients appreciate discussions about their personal future (Piers et al, 2013), many, especially older patients, usually postpone conversations on death and dying as long as possible, waiting until a health professional or relative brings up the subject (Almack et al, 2012). As a result, discussions on dying and care needs in the last phase of life are often conducted very late in the disease process or even not held at all (Parker et al, 2007; Abarshi et al, 2009). However, research has shown that discussing preferred place of care and death at an early stage often leads to fewer undesirable hospital admissions and more patients dying in the place they prefer (El-Jawahri et al, 2011). Moreover, patients who have spoken with health professionals about their preferences for care at the end of life have less aggressive treatment in the terminal phase and experience a better quality of life (Temel et al, 2010). The World Health Organization (WHO, 2002) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening 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’. One of the key elements in this definition is the emphasis on early identification of
International Journal of Palliative Nursing 2014, Vol 20, No 5
Abstract
Background: Early identification of pain and other problems is an important aspect of palliative care. Although nurses have an important role in palliative care, little is known about nurses’ perceptions of proactive palliative care. Objectives: This study aimed to explore nurses’ perceptions and experiences of proactive identification of problems and requirements among patients with palliative care needs. Methods: This was a qualitative study in which 16 nurses working in palliative care took part in two focus groups. Results: All of the nurses underlined the importance of their early involvement in palliative care. Anticipation of possible future problems, advice and information about end-of-life care and palliative care facilities, and assessment of patients’ wishes regarding care and preferred place of death were mentioned as important aspects of the early identification of problems and needs. Four themes were identified: the start of proactive palliative care; communication, support, and guidance; advocating for patients; and cooperation with health professionals. Conclusions: Nurses’ involvement in proactive palliative care is important in supporting patients’ palliative care management. Ongoing education, focused on multidisciplinary communication and cooperation, professional development, and empowerment of nurses, remains of utmost importance. Key words: Proactive l Palliative care l Nurses’ perceptions l Early identification l Qualitative research
problems and needs in order to enhance quality of life. Among others, Keirse (2009) recognised the importance of early planning of palliative care initiated by health professionals. This early planning and discussion of preferred care is a process rather than a specific moment in care. The process offers patients, their families, and health professionals the opportunity to discuss important end-of-life issues, taking into account all possible care options, as well as the patient’s needs and preferences. According to de KorteVerhoef and Teunissen (2009), in this process palliative care can be discussed in three dimensions: identifying patients with palliative care needs at an early stage, recognising and discussing the preferences and possibilities of care and
For a full list of author affiliations, see Box 1. Correspondence to: Els ML Verschuur [email protected]
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Els ML Verschuur is Associate Professor, Faculty of Health and Social Studies, HAN University of Applied Sciences, Hogeschool van Arnhem en Nijmegen, BHH, Postbus 6960, 6503 GL Nijmegen, The Netherlands; Marieke M Groot is Senior Researcher, Department of Pain and Palliative Care, Radboud University Medical Centre Nijmegen, The Netherlands; Rob van der Sande is Professor, Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.
treatment, and systematically and methodically identifying and assessing care problems in close cooperation with patients, informal caregivers, and health professionals. Nurses often have an important role in caring for patients with life-threatening conditions. Most nurses feel they should have a central role in providing palliative care (Burt et al, 2008), and nurses have been reported to find providing palliative care both challenging and rewarding (Dunne et al, 2005). Little is known about the opinions of nurses in The Netherlands on early identification of people with palliative care needs and providing proactive palliative care.
Aim The aim of this study was to explore nurses’ perceptions and experiences of proactive identification of patients’ palliative care problems, needs, and preferences.
Methods This was a qualitative study in which nurses experienced in palliative care and working in the community or in hospitals were invited to participate in focus groups based around the study aim.
Sample To recruit the sample, key figures with a significant role in palliative care in health-care organisations in the eastern part of The Netherlands, such as clinical nurse specialists and health-care managers, were asked to disseminate a letter explaining the goals of the study to potential participants. The inclusion criteria were nurses experienced in palliative care and working in community care or in hospitals. An application form was added to this letter, and nurses who made contact and who met the inclusion criteria were included in the study.
Data collection Led by an experienced focus group moderator (MG), the nurses were encouraged to describe and discuss their experiences of and ideas about pro active palliative care. The discussion in the focus groups centred on four pre-selected topics: the start of proactive palliative care; communication,
242
support, and guidance; cooperation with GPs and medical specialists; and advocating for patients. An interview guide was used. Both focus groups lasted a little over 2 hours and were recorded using audio equipment.
Data analysis The audio recordings were transcribed verbatim and the transcripts were read repeatedly to gain an overall impression before initial coding was carried out by two of the researchers (EV and MG). Agreement on the codes and analysis was reached after thorough discussion. The transcripts were translated for publication by EV and RdvS.
Ethical approval Ethical approval for the research protocol used and for the data analysis was not needed in The Netherlands.
Results A total of 19 nurses were invited to participate in a focus group. Three nurses did not participate for personal reasons. Two focus groups were organised, one with six participants and the other with ten. Eleven of the nurses were working in community care and five were working in a hospital. The participants worked at four institutions in ten different teams or wards in the eastern part of The Netherlands.
The start of proactive palliative care Although all of the nurses found it difficult to explicitly define proactive palliative care, they all thought it is important to start palliative care at an early stage. Most of the nurses said that palliative care should start as soon as patients are informed by their GP or specialist physician that curative treatment is no longer an option. As this occasion generally marks the start of palliative care for nurses, the participants said they often feel highly dependent on the GP or physician. Also, they felt that they are often involved in palliative care too late. ‘Sometimes the patient is dying and only then am I asked by the GP to become involved in palliative care for this patient.’ (FG1)
The nurses preferred to meet patients and relatives at an early stage in order to build a relationship of trust and to assess problems, needs, and preferences, without this necessarily leading to immediate actions and/or care. ‘I feel that communication in an early stage is very important in order to reduce anxiety and
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Box 1. Author affiliations
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Research
to offer some support and guidance to patients.’ (FG2)
Communication, support, and guidance All of the nurses said that communication in palliative care is crucial. They felt that early communication with the patient about their dying and the possibilities of future care is essential, and that this communication is a process of clarifying needs and preferences. One of the nurses described communication in palliative care as ‘... asking a lot of questions and supplementary questions’ (FG2). Despite considering it crucial, all of the nurses found communication a very difficult part of palliative care, especially at an early stage. They said that some patients are not able or are unwilling to talk about prognoses and impending death. ‘To talk about cancer and things like that. It is very difficult to identify to what extent patients are willing to talk about their illness.’ (FG1)
The nurses said they do not easily use the word ‘palliative’ in communication with patients and relatives. They said that for many patients and relatives, palliative care stands for the end of life and for death. The nurses said they are particularly reluctant to speak in terms of palliative care with patients who are still undergoing treatment and hoping to be cured. The use of tools such as the Distress Thermometer and the Complaints Diary was said to facilitate communication between nurse and patient. It was reported that, using these tools, patients can specify which physical, psychosocial, and/or spiritual problems they experience, so that the most serious problems can be rapidly identified.
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‘If you ask your patients to fill in the Distress Thermometer on a regular basis and discuss the outcomes with them, you are able to monitor your patients adequately.’ (FG1)
The nurses said that, for many patients, autonomy and self-management are important. One said that by completing a Complaints Diary, patients may acquire ‘a kind of grip on their lives’ and ‘cope with their problems in a positive way’ (FG1). Communication, support, and guidance in palliative care were thought to be not limited to patients. It was felt that relatives also need support in providing care to their loved ones. As an illustration, one nurse described a situation of a patient with a brain tumour. This patient could not communicate and barely responded to stimuli. His wife could not let go of her husband and was
International Journal of Palliative Nursing 2014, Vol 20, No 5
determined to take good care of him, which meant that she continuously offered him food and drinks as ‘otherwise he would die’ (FG2). Discussions about this were said to be very difficult; the wife could hardly accept the fact that she was going to lose her husband. This nurse was convinced that a lot of stress could have been prevented if she had been introduced to the patient and his relative at a much earlier stage.
Cooperation with GPs and medical specialists According to the nurses, good cooperation with GPs and medical specialists is critical for palliative care. ‘You must have a very good professional relationship with the GP or MD. If you have established that, you will be tipped off the moment a patient really gets bad news, so you can visit this patient in an early stage, even if palliative care is not immediately needed.’ (FG2)
❛Although all of the nurses found it difficult to explicitly define proactive palliative care, they all thought it is important to start palliative care at an early stage.❜
‘At all times I am looking for the best way to connect with the GP and really keep in touch with him.’ (FG1)
Some of the nurses discussed patients with palliative care needs with the GP on a regular basis. ‘We regularly consult each other and that is essential. Also when death is inevitable, I know when I have to visit the patient and what palliative or end-of-life care is needed, because we have discussed this in advance.’ (FG2)
The majority of the nurses said they experience difficulties in communicating and cooperating with GPs and specialists. They felt that often they are not considered an equal partner in care and experience a lack of acknowledgment of their knowledge and expertise. This was particularly true of the younger nurses. ‘I feel, being a young nurse, I am not always taken seriously.’ (FG1)
It was said that objectively measuring identified problems and symptoms, such as with pain scale scores or scores on the Delirium Observation Scale, may promote communication and cooperation with the GP. However, only a few of the nurses used objective data in their communication with GPs. ‘If I act on intuition only, I fear losing at least half of the GPs I work with. In my opinion, you
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❛Most of the nurses said that palliative care should start as soon as patients are informed by their GP or specialist physician that curative treatment is no longer an option.❜
have to be objective in your observations.’ (FG1)
Nurses as patient advocates The nurses felt that an important part of their job is advocating for patients. ‘We walk alongside the patient and have a significant role in palliative care-giving. We are the patient’s advocate. The patient is important, not the doctor, my colleagues, or me.’ (FG2)
As advocates, the nurses said they take care that the patient understands what the doctor has told them and are properly informed. They said that patients’ distress meant they often may not recall what the doctor actually told them. Moreover, as advocates, the nurses may help patients to express things that they find difficult to talk about. In this role, the nurses watched over the quality and continuity of care. However, many felt frustrated in their role as patient advocate. They complained that often patients are not adequately informed by their GP or specialist about their disease and prognosis. Moreover, arrangements were said to be hard to make and frequently not followed up by the GP. ‘Sometimes I have very difficult conversations [with the doctor] and then, then I think, “Now I have him in my corner”, and he promises to visit the patient in the afternoon, but eventually he fails me … and the patient. That is hard to get and very disappointing, because we need each other and we depend on each other.’ (FG1)
Discussion According to WHO, palliative care focuses on quality of life and on the prevention and relief of suffering, by means of early detection and prevention of pain and other problems. It is difficult to describe what exactly is meant by ‘early’ detection. Keirse (2009) and de Korte-Verhoef and Teunissen (2009) regarded ‘early’ as a quality of a process that extends from identifying patients to discussing actual and potential problems, end-of-life wishes, choices, and needs, to care planning. ‘Early’ is not a precise moment but refers to a timely start of the activities necessary to preserve or promote the quality of life of patients with palliative care needs. Programmes such as the Gold Standards Framework (GSF), developed in the UK (Thomas, 2003), and the derived Dutch version, Palliative Care in Primary Care (PAlliatieve Thuis Zorg (PaTz)) (Schweitzer, 2011), provide health professionals with tools to identify patients with palliative care needs at an
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early stage, so that they can proactively anticipate the needs, problems, and care preferences of these patients and their relatives. However, these programmes are not systematically used in the Dutch health-care system. It is important that programmes such as these are systematically implemented in daily care and that all health professionals involved are educated and trained in their use. Nurses in The Netherlands have a role in delivering proactive palliative care. This study gave valuable insight into nurses’ experiences and perceptions of these topics and the barriers and facilitators that hinder or stimulate their involvement. It found that in daily practice there is variation in the way nurses are able to affect the three key steps that de Korte-Verhoef and Teunissen (2009) suggested are needed for proactive palliative care: identifying patients with palliative care needs at an early stage; recognising and discussing their preferences and the possibilities for care and treatment; and systematically identifying and assessing care problems. Broadly speaking, early identification of patients in need of palliative care is the step in which the nurses’ added value is the most complex. However, obstacles also occur with regard to the other topics. These obstacles can be doctor-driven (e.g. doctors can refer patients to nurses too late and can fail to establish a good professional relationship in which the nurse’s knowledge and expertise are acknowledged) as well as nursedriven (e.g. nurses can fail to position their role as important in the care process, can make limited use of tools that provide a basis for more objective assessment, and can experience difficulties in discussing the patient’s condition, disease progression, and impending death with them). Palliative care should be multidisciplinary, so communication and cooperation with other health professionals, in particular GPs and medical specialists, are very important elements. In The Netherlands there are guidelines on cooperation between GPs and community care nurses in delivering primary palliative care (Eizenga et al, 2006). The results of the present study question the extent to which GPs and nurses are familiar with the content of the guidelines and use them in daily practice. The results show that guidelines in themselves are not sufficient to bring about change. The authors suggest that guidelines should be accompanied by multidisciplinary training of GPs, medical specialists, and nurses.
Limitations The study sample comprised nurses who volunteered to participate, who might have had a
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Research
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specific interest in the research topic, making selection bias a possibility. Second, the nurses will have influenced each other’s responses in the focus groups, which is a characteristic inherent to this methodology. Third, only a small sample of nurses took part in the focus groups, and the extent to which the findings are applicable to the general population of nurses in palliative care is unknown.
empowerment of nurses, remain of utmost importance. Nevertheless, these findings provide further evidence that nurses’ involvement in proactive palliative care is important in supporting patients’ palliative care management. I● JPN
Implications for practice
Abarshi E, Onwuteaka-Philipsen B, Donker G et al (2009) General practitioner awareness of preferred place of death and correlates of dying in a preferred place: a nationwide mortality follow-back study in the Netherlands. J Pain Symptom Manage 38(4): 568–77. doi: 10.1016/j.jpainsymman.2008.12.007 Almack K, Cox K, Moghaddam N et al (2012) After you: conversations between patients and healthcare professionals in planning for end of life care. BMC Palliat Care 11:15. doi: 10.1186/1472-684X-11-15 Burt J, Shipman C, Addington-Hall J, White P (2008) Nursing the dying within a generalist caseload: a focus group study of district nurses. Int J Nurs Stud 45(10): 1470-8. doi: 10.1016/j.ijnurstu.2008.01.003 de Korte-Verhoef MC, Teunissen SCCM (2009) Beter thuis sterven? Vroegsignalering door de thuiszorg bij patienten in de palliatieve fase. [In Dutch] http://bit.ly/1m5EVPW (accessed 25 April 2014) Dunne K, Sullivan K, Kernohan G (2005) Palliative care for patients with cancer: district nurses’ experiences. J Adv Nurs 50(4): 372–80 Eizenga WH, de Bont M, Vriezen JA et al (2006) Landelijke Eerstelijns Samenwerkings Afspraak Palliatieve zorg. [In Dutch] Huisarts Wetenschap 49(6): 308–12 El-Jawahri A, Greer JA, Temel JS (2011) Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol 9(3): 87–94 Fitzsimons D, Mullan D, Wilson JS et al (2007) The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliat Med 21(4): 313–22 Francke AL, Albers G, de Veer AJE, Onwuteaka-Philipsen B (2012) Nog steeds veel behoefte aan extra scholing levenseindezorg. [In Dutch] TVZ 2: 37–40 Glare P, Sinclair C, Downing M et al (2008) Predicting survival in patients with advanced disease. Eur J Cancer 44(8): 1146–56. doi: 10.1016/j.ejca.2008.02.030 Keirse M (2009) Het levenseinde teruggeven aan de mensen. Over vroegtijdige planning van de zorg. [In Dutch] http:// bit.ly/1j3lxDy (accessed 25 April 2014) Kenniscentra Palliatieve Zorg en VIKC (2009) Inventarisatie van onderwijs en palliatieve zorg. Een signaleringsrapport. [In Dutch] http://bit.ly/1m5EZzh (accessed 25 April 2014) Parker SM, Clayton JM, Hancock K et al (2007) A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 34(1): 81–93 Piers RD, van Eechoud IJ, Van Camp S (2013) Advance care planning in terminally ill and frail older persons. Patient Educ Couns 90(3): 323–9. doi: 10.1016/j. pec.2011.07.008 Schweitzer B (2011) Samenwerking opnieuw uitgevonden. [In Dutch] Pallium 2: 20–1 Temel JS, Greer JA, Muzikansky A et al (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363(8): 733–42. doi: 10.1056/NEJMoa1000678 Thomas K (2003) Caring for the Dying At Home: Companions on the Journey. Radcliffe Medical Press, Oxford World Health Organization (2002) WHO Definition of Palliative Care. www.who.int/cancer/palliative/definition/en/ (accessed 25 April 2014)
The results have implications for palliative care nurses, GPs, medical specialists, educators, and students. The nurses who participated in the focus groups found it difficult to define early identification of patients with palliative care needs and proactive palliative care, reflecting large variation and uncertainty in what is considered to be palliative nursing care. The main implication of this uncertainty is the need for clear guidelines for nurses on palliative care, especially on topics such as active detection of patients, meeting patients at an early stage, and actively identifying and recognising problems. As all of the nurses underlined the importance of multidisciplinary cooperation, in particular with GPs and specialists, guidelines should be multidisciplinary. The study also shows a clear need for further education and training in palliative care, not only in specific nursing activities but also in multi disciplinary communication and cooperation. In The Netherlands, there is enormous variation in education in palliative care, depending on the type of education programme, the specific discipline, and the educator (Kenniscentra Palliatieve Zorg en VIKC, 2009). There is hardly any structured training in palliative care in undergraduate nursing and medical degrees. A recent study showed that the majority of nurses in The Netherlands are in need of further training in several topics in palliative and end-of-life care (Francke et al, 2012). How early identification of patients with palliative care needs and delivery of proactive palliative care should be addressed in nursing and medical curricula is worthy of further investigation.
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Conclusions The nurses in this study all underlined the importance of their involvement in proactive palliative care at an early stage. However, there is a difference between attaching importance to something and what actually takes place in daily practice. Therefore, ongoing education, focused on multidisciplinary communication and cooperation, professional development, and
International Journal of Palliative Nursing 2014, Vol 20, No 5
Declaration of interests This work had no external sources of funding. The authors have no conflicts of interest to declare.
❛The main implication ... is the need for clear guidelines for nurses on palliative care, especially on topics such as active detection of patients, meeting patients at an early stage, and actively identifying and recognising problems.❜
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Nurses’ perceptions of proactive palliative care: a Dutch focus group study Els ML Verschuur, Marieke M Groot, Rob van der Sande
© 2014 MA Healthcare Ltd
F
or most terminally ill people, it is important to have information about what to expect in the last phase of life and to be able to influence their place of care and place of death. The proper moment to discuss wishes and needs in the last phase of life is difficult to determine. One reason for this is that it is hard for health professionals to predict life expectancy (Fitzsimons et al, 2007; Glare et al, 2008). Moreover, health professionals do not want to strip the patient of all hope. Furthermore, patients and relatives sometimes exert considerable pressure on professionals not to ‘give up’ on the patient. Although most patients appreciate discussions about their personal future (Piers et al, 2013), many, especially older patients, usually postpone conversations on death and dying as long as possible, waiting until a health professional or relative brings up the subject (Almack et al, 2012). As a result, discussions on dying and care needs in the last phase of life are often conducted very late in the disease process or even not held at all (Parker et al, 2007; Abarshi et al, 2009). However, research has shown that discussing preferred place of care and death at an early stage often leads to fewer undesirable hospital admissions and more patients dying in the place they prefer (El-Jawahri et al, 2011). Moreover, patients who have spoken with health professionals about their preferences for care at the end of life have less aggressive treatment in the terminal phase and experience a better quality of life (Temel et al, 2010). The World Health Organization (WHO, 2002) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening 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’. One of the key elements in this definition is the emphasis on early identification of
International Journal of Palliative Nursing 2014, Vol 20, No 5
Abstract
Background: Early identification of pain and other problems is an important aspect of palliative care. Although nurses have an important role in palliative care, little is known about nurses’ perceptions of proactive palliative care. Objectives: This study aimed to explore nurses’ perceptions and experiences of proactive identification of problems and requirements among patients with palliative care needs. Methods: This was a qualitative study in which 16 nurses working in palliative care took part in two focus groups. Results: All of the nurses underlined the importance of their early involvement in palliative care. Anticipation of possible future problems, advice and information about end-of-life care and palliative care facilities, and assessment of patients’ wishes regarding care and preferred place of death were mentioned as important aspects of the early identification of problems and needs. Four themes were identified: the start of proactive palliative care; communication, support, and guidance; advocating for patients; and cooperation with health professionals. Conclusions: Nurses’ involvement in proactive palliative care is important in supporting patients’ palliative care management. Ongoing education, focused on multidisciplinary communication and cooperation, professional development, and empowerment of nurses, remains of utmost importance. Key words: Proactive l Palliative care l Nurses’ perceptions l Early identification l Qualitative research
problems and needs in order to enhance quality of life. Among others, Keirse (2009) recognised the importance of early planning of palliative care initiated by health professionals. This early planning and discussion of preferred care is a process rather than a specific moment in care. The process offers patients, their families, and health professionals the opportunity to discuss important end-of-life issues, taking into account all possible care options, as well as the patient’s needs and preferences. According to de KorteVerhoef and Teunissen (2009), in this process palliative care can be discussed in three dimensions: identifying patients with palliative care needs at an early stage, recognising and discussing the preferences and possibilities of care and
For a full list of author affiliations, see Box 1. Correspondence to: Els ML Verschuur [email protected]
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Els ML Verschuur is Associate Professor, Faculty of Health and Social Studies, HAN University of Applied Sciences, Hogeschool van Arnhem en Nijmegen, BHH, Postbus 6960, 6503 GL Nijmegen, The Netherlands; Marieke M Groot is Senior Researcher, Department of Pain and Palliative Care, Radboud University Medical Centre Nijmegen, The Netherlands; Rob van der Sande is Professor, Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.
treatment, and systematically and methodically identifying and assessing care problems in close cooperation with patients, informal caregivers, and health professionals. Nurses often have an important role in caring for patients with life-threatening conditions. Most nurses feel they should have a central role in providing palliative care (Burt et al, 2008), and nurses have been reported to find providing palliative care both challenging and rewarding (Dunne et al, 2005). Little is known about the opinions of nurses in The Netherlands on early identification of people with palliative care needs and providing proactive palliative care.
Aim The aim of this study was to explore nurses’ perceptions and experiences of proactive identification of patients’ palliative care problems, needs, and preferences.
Methods This was a qualitative study in which nurses experienced in palliative care and working in the community or in hospitals were invited to participate in focus groups based around the study aim.
Sample To recruit the sample, key figures with a significant role in palliative care in health-care organisations in the eastern part of The Netherlands, such as clinical nurse specialists and health-care managers, were asked to disseminate a letter explaining the goals of the study to potential participants. The inclusion criteria were nurses experienced in palliative care and working in community care or in hospitals. An application form was added to this letter, and nurses who made contact and who met the inclusion criteria were included in the study.
Data collection Led by an experienced focus group moderator (MG), the nurses were encouraged to describe and discuss their experiences of and ideas about pro active palliative care. The discussion in the focus groups centred on four pre-selected topics: the start of proactive palliative care; communication,
242
support, and guidance; cooperation with GPs and medical specialists; and advocating for patients. An interview guide was used. Both focus groups lasted a little over 2 hours and were recorded using audio equipment.
Data analysis The audio recordings were transcribed verbatim and the transcripts were read repeatedly to gain an overall impression before initial coding was carried out by two of the researchers (EV and MG). Agreement on the codes and analysis was reached after thorough discussion. The transcripts were translated for publication by EV and RdvS.
Ethical approval Ethical approval for the research protocol used and for the data analysis was not needed in The Netherlands.
Results A total of 19 nurses were invited to participate in a focus group. Three nurses did not participate for personal reasons. Two focus groups were organised, one with six participants and the other with ten. Eleven of the nurses were working in community care and five were working in a hospital. The participants worked at four institutions in ten different teams or wards in the eastern part of The Netherlands.
The start of proactive palliative care Although all of the nurses found it difficult to explicitly define proactive palliative care, they all thought it is important to start palliative care at an early stage. Most of the nurses said that palliative care should start as soon as patients are informed by their GP or specialist physician that curative treatment is no longer an option. As this occasion generally marks the start of palliative care for nurses, the participants said they often feel highly dependent on the GP or physician. Also, they felt that they are often involved in palliative care too late. ‘Sometimes the patient is dying and only then am I asked by the GP to become involved in palliative care for this patient.’ (FG1)
The nurses preferred to meet patients and relatives at an early stage in order to build a relationship of trust and to assess problems, needs, and preferences, without this necessarily leading to immediate actions and/or care. ‘I feel that communication in an early stage is very important in order to reduce anxiety and
© 2014 MA Healthcare Ltd
Box 1. Author affiliations
International Journal of Palliative Nursing 2014, Vol 20, No 5
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 129.096.252.188 on October 9, 2015. For personal use only. No other uses without permission. . All rights res
Research
to offer some support and guidance to patients.’ (FG2)
Communication, support, and guidance All of the nurses said that communication in palliative care is crucial. They felt that early communication with the patient about their dying and the possibilities of future care is essential, and that this communication is a process of clarifying needs and preferences. One of the nurses described communication in palliative care as ‘... asking a lot of questions and supplementary questions’ (FG2). Despite considering it crucial, all of the nurses found communication a very difficult part of palliative care, especially at an early stage. They said that some patients are not able or are unwilling to talk about prognoses and impending death. ‘To talk about cancer and things like that. It is very difficult to identify to what extent patients are willing to talk about their illness.’ (FG1)
The nurses said they do not easily use the word ‘palliative’ in communication with patients and relatives. They said that for many patients and relatives, palliative care stands for the end of life and for death. The nurses said they are particularly reluctant to speak in terms of palliative care with patients who are still undergoing treatment and hoping to be cured. The use of tools such as the Distress Thermometer and the Complaints Diary was said to facilitate communication between nurse and patient. It was reported that, using these tools, patients can specify which physical, psychosocial, and/or spiritual problems they experience, so that the most serious problems can be rapidly identified.
© 2014 MA Healthcare Ltd
‘If you ask your patients to fill in the Distress Thermometer on a regular basis and discuss the outcomes with them, you are able to monitor your patients adequately.’ (FG1)
The nurses said that, for many patients, autonomy and self-management are important. One said that by completing a Complaints Diary, patients may acquire ‘a kind of grip on their lives’ and ‘cope with their problems in a positive way’ (FG1). Communication, support, and guidance in palliative care were thought to be not limited to patients. It was felt that relatives also need support in providing care to their loved ones. As an illustration, one nurse described a situation of a patient with a brain tumour. This patient could not communicate and barely responded to stimuli. His wife could not let go of her husband and was
International Journal of Palliative Nursing 2014, Vol 20, No 5
determined to take good care of him, which meant that she continuously offered him food and drinks as ‘otherwise he would die’ (FG2). Discussions about this were said to be very difficult; the wife could hardly accept the fact that she was going to lose her husband. This nurse was convinced that a lot of stress could have been prevented if she had been introduced to the patient and his relative at a much earlier stage.
Cooperation with GPs and medical specialists According to the nurses, good cooperation with GPs and medical specialists is critical for palliative care. ‘You must have a very good professional relationship with the GP or MD. If you have established that, you will be tipped off the moment a patient really gets bad news, so you can visit this patient in an early stage, even if palliative care is not immediately needed.’ (FG2)
❛Although all of the nurses found it difficult to explicitly define proactive palliative care, they all thought it is important to start palliative care at an early stage.❜
‘At all times I am looking for the best way to connect with the GP and really keep in touch with him.’ (FG1)
Some of the nurses discussed patients with palliative care needs with the GP on a regular basis. ‘We regularly consult each other and that is essential. Also when death is inevitable, I know when I have to visit the patient and what palliative or end-of-life care is needed, because we have discussed this in advance.’ (FG2)
The majority of the nurses said they experience difficulties in communicating and cooperating with GPs and specialists. They felt that often they are not considered an equal partner in care and experience a lack of acknowledgment of their knowledge and expertise. This was particularly true of the younger nurses. ‘I feel, being a young nurse, I am not always taken seriously.’ (FG1)
It was said that objectively measuring identified problems and symptoms, such as with pain scale scores or scores on the Delirium Observation Scale, may promote communication and cooperation with the GP. However, only a few of the nurses used objective data in their communication with GPs. ‘If I act on intuition only, I fear losing at least half of the GPs I work with. In my opinion, you
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❛Most of the nurses said that palliative care should start as soon as patients are informed by their GP or specialist physician that curative treatment is no longer an option.❜
have to be objective in your observations.’ (FG1)
Nurses as patient advocates The nurses felt that an important part of their job is advocating for patients. ‘We walk alongside the patient and have a significant role in palliative care-giving. We are the patient’s advocate. The patient is important, not the doctor, my colleagues, or me.’ (FG2)
As advocates, the nurses said they take care that the patient understands what the doctor has told them and are properly informed. They said that patients’ distress meant they often may not recall what the doctor actually told them. Moreover, as advocates, the nurses may help patients to express things that they find difficult to talk about. In this role, the nurses watched over the quality and continuity of care. However, many felt frustrated in their role as patient advocate. They complained that often patients are not adequately informed by their GP or specialist about their disease and prognosis. Moreover, arrangements were said to be hard to make and frequently not followed up by the GP. ‘Sometimes I have very difficult conversations [with the doctor] and then, then I think, “Now I have him in my corner”, and he promises to visit the patient in the afternoon, but eventually he fails me … and the patient. That is hard to get and very disappointing, because we need each other and we depend on each other.’ (FG1)
Discussion According to WHO, palliative care focuses on quality of life and on the prevention and relief of suffering, by means of early detection and prevention of pain and other problems. It is difficult to describe what exactly is meant by ‘early’ detection. Keirse (2009) and de Korte-Verhoef and Teunissen (2009) regarded ‘early’ as a quality of a process that extends from identifying patients to discussing actual and potential problems, end-of-life wishes, choices, and needs, to care planning. ‘Early’ is not a precise moment but refers to a timely start of the activities necessary to preserve or promote the quality of life of patients with palliative care needs. Programmes such as the Gold Standards Framework (GSF), developed in the UK (Thomas, 2003), and the derived Dutch version, Palliative Care in Primary Care (PAlliatieve Thuis Zorg (PaTz)) (Schweitzer, 2011), provide health professionals with tools to identify patients with palliative care needs at an
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early stage, so that they can proactively anticipate the needs, problems, and care preferences of these patients and their relatives. However, these programmes are not systematically used in the Dutch health-care system. It is important that programmes such as these are systematically implemented in daily care and that all health professionals involved are educated and trained in their use. Nurses in The Netherlands have a role in delivering proactive palliative care. This study gave valuable insight into nurses’ experiences and perceptions of these topics and the barriers and facilitators that hinder or stimulate their involvement. It found that in daily practice there is variation in the way nurses are able to affect the three key steps that de Korte-Verhoef and Teunissen (2009) suggested are needed for proactive palliative care: identifying patients with palliative care needs at an early stage; recognising and discussing their preferences and the possibilities for care and treatment; and systematically identifying and assessing care problems. Broadly speaking, early identification of patients in need of palliative care is the step in which the nurses’ added value is the most complex. However, obstacles also occur with regard to the other topics. These obstacles can be doctor-driven (e.g. doctors can refer patients to nurses too late and can fail to establish a good professional relationship in which the nurse’s knowledge and expertise are acknowledged) as well as nursedriven (e.g. nurses can fail to position their role as important in the care process, can make limited use of tools that provide a basis for more objective assessment, and can experience difficulties in discussing the patient’s condition, disease progression, and impending death with them). Palliative care should be multidisciplinary, so communication and cooperation with other health professionals, in particular GPs and medical specialists, are very important elements. In The Netherlands there are guidelines on cooperation between GPs and community care nurses in delivering primary palliative care (Eizenga et al, 2006). The results of the present study question the extent to which GPs and nurses are familiar with the content of the guidelines and use them in daily practice. The results show that guidelines in themselves are not sufficient to bring about change. The authors suggest that guidelines should be accompanied by multidisciplinary training of GPs, medical specialists, and nurses.
Limitations The study sample comprised nurses who volunteered to participate, who might have had a
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Research
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Research
specific interest in the research topic, making selection bias a possibility. Second, the nurses will have influenced each other’s responses in the focus groups, which is a characteristic inherent to this methodology. Third, only a small sample of nurses took part in the focus groups, and the extent to which the findings are applicable to the general population of nurses in palliative care is unknown.
empowerment of nurses, remain of utmost importance. Nevertheless, these findings provide further evidence that nurses’ involvement in proactive palliative care is important in supporting patients’ palliative care management. I● JPN
Implications for practice
Abarshi E, Onwuteaka-Philipsen B, Donker G et al (2009) General practitioner awareness of preferred place of death and correlates of dying in a preferred place: a nationwide mortality follow-back study in the Netherlands. J Pain Symptom Manage 38(4): 568–77. doi: 10.1016/j.jpainsymman.2008.12.007 Almack K, Cox K, Moghaddam N et al (2012) After you: conversations between patients and healthcare professionals in planning for end of life care. BMC Palliat Care 11:15. doi: 10.1186/1472-684X-11-15 Burt J, Shipman C, Addington-Hall J, White P (2008) Nursing the dying within a generalist caseload: a focus group study of district nurses. Int J Nurs Stud 45(10): 1470-8. doi: 10.1016/j.ijnurstu.2008.01.003 de Korte-Verhoef MC, Teunissen SCCM (2009) Beter thuis sterven? Vroegsignalering door de thuiszorg bij patienten in de palliatieve fase. [In Dutch] http://bit.ly/1m5EVPW (accessed 25 April 2014) Dunne K, Sullivan K, Kernohan G (2005) Palliative care for patients with cancer: district nurses’ experiences. J Adv Nurs 50(4): 372–80 Eizenga WH, de Bont M, Vriezen JA et al (2006) Landelijke Eerstelijns Samenwerkings Afspraak Palliatieve zorg. [In Dutch] Huisarts Wetenschap 49(6): 308–12 El-Jawahri A, Greer JA, Temel JS (2011) Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol 9(3): 87–94 Fitzsimons D, Mullan D, Wilson JS et al (2007) The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliat Med 21(4): 313–22 Francke AL, Albers G, de Veer AJE, Onwuteaka-Philipsen B (2012) Nog steeds veel behoefte aan extra scholing levenseindezorg. [In Dutch] TVZ 2: 37–40 Glare P, Sinclair C, Downing M et al (2008) Predicting survival in patients with advanced disease. Eur J Cancer 44(8): 1146–56. doi: 10.1016/j.ejca.2008.02.030 Keirse M (2009) Het levenseinde teruggeven aan de mensen. Over vroegtijdige planning van de zorg. [In Dutch] http:// bit.ly/1j3lxDy (accessed 25 April 2014) Kenniscentra Palliatieve Zorg en VIKC (2009) Inventarisatie van onderwijs en palliatieve zorg. Een signaleringsrapport. [In Dutch] http://bit.ly/1m5EZzh (accessed 25 April 2014) Parker SM, Clayton JM, Hancock K et al (2007) A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 34(1): 81–93 Piers RD, van Eechoud IJ, Van Camp S (2013) Advance care planning in terminally ill and frail older persons. Patient Educ Couns 90(3): 323–9. doi: 10.1016/j. pec.2011.07.008 Schweitzer B (2011) Samenwerking opnieuw uitgevonden. [In Dutch] Pallium 2: 20–1 Temel JS, Greer JA, Muzikansky A et al (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363(8): 733–42. doi: 10.1056/NEJMoa1000678 Thomas K (2003) Caring for the Dying At Home: Companions on the Journey. Radcliffe Medical Press, Oxford World Health Organization (2002) WHO Definition of Palliative Care. www.who.int/cancer/palliative/definition/en/ (accessed 25 April 2014)
The results have implications for palliative care nurses, GPs, medical specialists, educators, and students. The nurses who participated in the focus groups found it difficult to define early identification of patients with palliative care needs and proactive palliative care, reflecting large variation and uncertainty in what is considered to be palliative nursing care. The main implication of this uncertainty is the need for clear guidelines for nurses on palliative care, especially on topics such as active detection of patients, meeting patients at an early stage, and actively identifying and recognising problems. As all of the nurses underlined the importance of multidisciplinary cooperation, in particular with GPs and specialists, guidelines should be multidisciplinary. The study also shows a clear need for further education and training in palliative care, not only in specific nursing activities but also in multi disciplinary communication and cooperation. In The Netherlands, there is enormous variation in education in palliative care, depending on the type of education programme, the specific discipline, and the educator (Kenniscentra Palliatieve Zorg en VIKC, 2009). There is hardly any structured training in palliative care in undergraduate nursing and medical degrees. A recent study showed that the majority of nurses in The Netherlands are in need of further training in several topics in palliative and end-of-life care (Francke et al, 2012). How early identification of patients with palliative care needs and delivery of proactive palliative care should be addressed in nursing and medical curricula is worthy of further investigation.
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Conclusions The nurses in this study all underlined the importance of their involvement in proactive palliative care at an early stage. However, there is a difference between attaching importance to something and what actually takes place in daily practice. Therefore, ongoing education, focused on multidisciplinary communication and cooperation, professional development, and
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Declaration of interests This work had no external sources of funding. The authors have no conflicts of interest to declare.
❛The main implication ... is the need for clear guidelines for nurses on palliative care, especially on topics such as active detection of patients, meeting patients at an early stage, and actively identifying and recognising problems.❜
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