EMPIRICAL STUDIES
doi: 10.1111/scs.12174
Struggling with issues about cardiopulmonary resuscitation (CPR) for end-stage heart failure patients €nnstro € m (Senior Lecturer)1 and Tiny Jaarsma (Professor)2 Margareta Bra 1
Strategic Research Program in Health Care Sciences (SFO-V), ‘Bridging Research and Practice for Better Health’, Department of Nursing, Ume a University, Ume a, Sweden and 2Department of Social and Welfare Studies, Faculty of Health Sciences, Link€ oping University, Link€ oping, Sweden
Scand J Caring Sci; 2015; 29; 379–385 Struggling with issues about cardiopulmonary resuscitation (CPR) for end-stage heart failure patients
Background: Integrating heart failure and palliative care teams combines unique expertise from both cardiology and palliative care. However, professionals from the two arenas of life-saving cardiology and palliative care may well have different experiences with and approaches to patient care. Little is known how to optimally discuss cardiopulmonary resuscitation with patients and their relatives and what challenges are for healthcare providers. Objective: The aim of this study was to describe the experiences and thoughts of members of an integrated heart failure and palliative care team concerning talking about CPR with end-stage heart failure patients. Method: We used a descriptive qualitative design, conducting group interviews during 2011 with professionals from different disciplines working with heart failure patients over a 1-year period. A qualitative content analysis was performed to examine the interview data.
Background Patients with CHF have symptoms as severe and distressing as those of patients with cancer, but they do not have equal access to palliative care (1, 2). The course of CHF is unpredictable, making it difficult to establish when the palliative stage has been reached (3). The World Health Organization (WHO) describe that palliative care is based on a holistic approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Palliative care should be offered early in the illness, in conjunction with other therapies that are intended to prolong life (4). Correspondence to: Margareta Br€annstr€ om, Department of Nursing, Ume a University, Campus Skellefte a, 931 87 Skellefte a, Sweden. E-mail [email protected] © 2014 Nordic College of Caring Science
Results: Professional caregivers in integrated heart failure and palliative homecare are struggling with the issue of CPR of end-stage heart failure patients. They wrestle with the question of whether CPR should be performed at all in these terminally ill patients. They also feel challenged by the actual conversation about CPR with the patients and their relatives. Despite talking them about CPR with patients and relatives is difficult, the study participants described that doing so is important, as it could be the start of a broader end-of-life conversation. Conclusion: Talking with patient and relatives about CPR in end-stage heart failure, as suggested in the current heart failure guidelines, is a challenge in daily clinical practice. It is important to discuss the difficulties within the team and to decide whether, whom, how and when to talk about CPR with individual patients and their relatives. Keywords: CPR, heart failure, integrated care, palliative care, person-centred care. Submitted 31 March 2014, Accepted 17 July 2014
The advice in the recent heart failure guidelines of the European Society of Cardiology (ESC) is to include advanced care planning in palliative care, taking account of patients’ preferences regarding place of death and cardiopulmonary resuscitation (CPR) (5). Similarly, an ESC position paper states that in addition to covering issues in medical management and self-care behaviours, the education of patients and their families should include resuscitation preferences (3). The lack of clear terminology and the unpredictability of the course of HF may hinder the provision of palliative care to patients with HF. However, in accordance with the WHO definition (4), a palliative care approach is applicable earlier in the course of HF in parallel with treatment options directed at improving cardiac function and prognosis (3, 6). In addition, in considering discussion on resuscitation, it is not clear what content to discuss, how the 379
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conversation should start and by whom, and where and when the conversation should take place. In contrast to the somewhat broad recommendations in the ESC Heart failure guidelines, a recent statement of the European Heart Rhythm Association addresses more specific aspects of discussing the withdrawal of devices. For example, in that document, it is stated that ‘according to the personal relationship with the patient, the team member closest to him/her should usually be the one who initiates discussion about device deactivation with the patient and his [or her] relatives’ (7). However, it should be recognised that although this statement is specific, holding these conversations in practice is still perceived as difficult (8). In heart failure care, a team approach is increasingly advocated (9). Specifically in end-stage heart failure, several initiatives are under way to integrate palliative and heart failure teams; these initiatives include the use of models where heart failure specialist care have access to palliative care consultancy, where palliative care services assume responsibility for the basic care of the patient and his/her family or where heart failure specialists serve as consultants on specific treatment issues (3, 10, 11). Integrating heart failure and palliative care teams combines unique expertise from both cardiology and palliative care. However, professionals from the two arenas of life-saving cardiology and palliative care may well have different experiences with and approaches to patient care. These differences are likely to lead to additional challenges in deciding on the responsibility for and relevance of discussing resuscitation in advanced heart failure patients. We found no studies that illuminate professional caregivers’ experiences of ethically troubling situations when integrating palliative and curative care settings.
Aim Our aim in this study was to describe the experiences and thoughts of members of an integrated heart failure and palliative care team, during the first year that the integrated team was active, concerning talking about CPR with end-stage heart failure patients.
Method
hospital in Sweden; the unit provides patient care during the daytime on weekdays. The team members collaborate closely and meet twice a month to ensure optimal patient care. The study was part of the integrated Palliative advanced homecaRE and heart FailurE caRe (PREFER) research project during 2011–2013. The PREFER model offers specialised care, team-based care, total care, homebased care, continuity of care, person-centred care, structured care, easy access, support to relatives and support to team members. The intervention has been previously described elsewhere (10).
Participants All team members (n = 7) of the PREFER project were invited and agreed to participate in the study. The first author (MB) was responsible for taking the first contact. The team members comprise two physicians (one cardiologist and one general practitioner specialised in palliative medicine), three nurses (two district nurses and one heart failure nurse specialised in palliative care), one occupational therapist and one physiotherapist. The participants were two men and five women, ranging in age from 40 to 67 years, who had worked from 20 to 40 years. Data were collected in 2011 during the first year that the integrated team was active.
Group interviews The group interviews were held every third month, in 2011, over the first year of working together; each session lasted 60 minutes, and four group interviews were held in total. The first author conducted the group interviews at the participants’ workplace. The interviews began with an open-ended question: ‘Please tell me about your experience of ethically troubling or challenging situations in your work with severe heart failure patients’. Probing questions were then asked as each interview progressed. The group leader stimulated the discussion and ensured that all of the participants had an opportunity to speak. During the group interviews, the participants shared their experiences, thoughts and feelings with one another. They reflected on both ongoing and closed cases. All the interviews were tape-recorded and transcribed verbatim.
Design In the study, we used a qualitative descriptive design, analysing the content of four group interviews with seven participants over a 1-year period.
Setting The research context was an integrated heart failure and specialised palliative home care unit based in a community
Analysis We used qualitative content analysis to examine the interview data. Although the study participants discussed several difficult topics such as cancelling a driving licence and ordering an electric wheelchair in the group interviews, the topic of CPR was most prominent and was raised during all four interviews; the authors therefore chose to report on this topic. We used © 2014 Nordic College of Caring Science
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Table 1 Examples of qualitative content analysis Meaning unit
Condensation
Code
Subtheme
Theme
‘You cannot ask patients if they want to be resuscitated after a cardiac arrest if the medical assessment shows that the result will not be good’ ‘The patient’s wishes must be honoured; that is my guiding principle”
Uncertainties about whether it is right to involve the patients in the decision-making about CPR The patient’s wishes must be honoured
Doubts about shared decision-making
Doubting whether to involve patients and relatives in the decision-making
Being confronted by different views within the team on the patient’s right of self-determination
Patient’s right of self-determination
Emphasising the patient’s right of self-determination
qualitative content analysis to examine the interview data (12, 13). The interviews were transcribed all together after the four interviews were conducted. The interviews were read several times to obtain a sense of the whole and then coded the text, grouped the coded text that had similar content and abstracted the grouped text into subthemes. The final step was to group the subthemes into themes. Examples of the content analysis in this current study are presented in Table 1.
Results The analysis identified two themes and five subthemes. The findings will be presented by each theme and illustrated with quotations from the interviews (Table 2).
Being confronted by different views within the team on the patient’s right of self-determination Doubting whether to involve patients and relatives in the decision-making. Some of the participants described their doubts and uncertainties about whether it is right to involve the patients and their relatives in the decisionmaking about CPR, since CPR was often found to do more harm than good to the patient. To start
Table 2 Subthemes and themes in the thematic analysis Subthemes
Themes
Doubting whether to involve patients and relatives in the decision-making Emphasising the patient’s right of self-determination Clarifying the responsibility for talking with the patient about poor prognosis and resuscitation Adopting the approach of taking it along the way Becoming more open to going straight to the point
Being confronted by different views within the team on the patient’s right of self-determination Putting the light on the table
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resuscitation when the chance of success is so small was perceived as undesirable, since CPR can hinder a dignified death. Participants considered patient’s dramatic death, such as during CPR, to be undignified. CPR also is likely to prolong the natural process of dying and thus was perceived as not benefitting the patient or his/her relatives. Other thoughts about decision-making were related to responsibility, with the participants stating that the decision to use CPR should in general be based on the medical assessment only. One participant said, ‘You cannot ask patients if they want to be resuscitated after a cardiac arrest if the medical assessment shows that the result will not be good’. In addition, participants mentioned the need to take the patient’s decision-making capacity into account, since cognitive impairment is usual among end-stage heart failure patients. Emphasising the patient’s right of self-determination. Some of the participants emphasised the right of the patient to participate in the decision-making about CPR and expressed no doubt about the patient’s right to refuse resuscitation. The participants also addressed the right of the patient to wish to be resuscitated, even after being given the information that the procedure might be futile from a medical perspective. Giving CPR could be a way to create a comforting sense of security in the patient, as one participant reported, ‘for me, it is not hard to give patients security so it is important that we try’. Limiting the intensity and length of time of the CPR procedure could be a way to meet the patient’s wishes while at the same time decreasing the risk that the patient survives to experience a life of extremely low quality or be in a permanent vegetative state. One participant said, ‘The patient’s wishes must be honoured; that is my guiding principle. If you have failed with that. . . if they have not fully accepted that [the information that CPR is not advisable], you just have to accept it. Just what to do if it does occur; you may have to stop rather quickly then’.
Putting the light on the table Clarifying the responsibility for talking with the patient about poor prognosis and resuscitation. The study participants
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commented that it is important to talk about poor prognosis with end-stage heart failure patients, since it can be a way to help patients to prepare themselves for an imminent death. One of the participants said, ‘I believe you must not withhold information, because if you were given it from the start, then. . .. And perhaps it is part of patients coming to terms with the realisation that the end is coming. . . that they are going to die soon’. The participants also discussed the need for better informing patients and their families about the prognosis before talking about CPR. Furthermore, all the participants viewed that physicians are or should be responsible for informing patients and their families about the poor prognosis and discussing CPR with them. Adopting the approach of taking it along the way. The approach of taking it along the way means holding an ongoing conversation, which is a process over time rather than a single event. Referring to the difficulty of talking about CPR with patients and their relatives, the study participants emphasised the importance of proceeding with great care. They reported that instead of going straight to the point and discussing CPR, they usually ask questions about what the patient expects from the future and what care the patient wants in the event of his/her condition worsening. The participants also said that they fear doing harm – for example, causing anxiety and ‘taking away the spark of life’, as one participant’ described it. The participants went on to highlight the factors that can facilitate the opportunity to talk about CPR, such as a good relationship between patient and caregiver, the right timing, sufficient time to talk and a supportive environment. However, waiting for the optimal situation and timing can result in team members not having an opportunity to talk about CPR with patients. One participant commented, ‘That good conversation that needs time rarely happens. In my experience, it’s difficult to sit in a good room, where you are not disturbed and where both the doctor and the patient perceive the situation is safe enough to have a good conversation. Yes, a lot really needs to be done there’. It can be difficult for team members to identify the right time to talk because the patient’s viewpoint is often one of living in the here and now. The nurses in the team elaborated that they usually have more opportunities than other team members to catch the right moment because they meet patients along the trajectory of the disease more frequently. Becoming more open to going straight to the point. The participants shared their thoughts on adopting a more direct approach when talking to patients and their relatives about their preferences for CPR, for example to routinely include this topic in conversation with the healthcare provider going straight to the point by asking patients for
their views on CPR. In conversations with a patient, family members should be included where possible, to help the relatives understand the expected actions and interventions of care professionals in the event of the patient’s death. One participant said, ‘It could be good to have this conversation with patients so relatives can understand why we did not do anything, or why we tried despite knowing that we could not resuscitate the patient’. During the second group interview, one of the physicians had suggested taking a direct approach in all meetings with the patient and his/her relatives. The participants’ reflections in the subsequent group interviews revealed that in adopting such an approach, one should not expect the patient’s reply right away, but one can use the direct approach to begin the process of advance care planning. The participants also discussed the difficulties of talking about CPR jointly with the patient and his/her relatives. Patients and relatives do not want to upset each other and might protect each other by not wanting to talk about cardiac arrest and death. Team members might need to talk to the patient alone, to be sure that the patient made the decision. Some participants pointed out that one risk team members face is of listening more to the relatives and missing what the patient wants. One participant shared a personal story about a male patient, ‘He would possibly have expressed something else if I had talked only with him. But she [a close relative] took over the conversation’.
Discussion Professional caregivers in integrated heart failure and palliative homecare struggle with the issue of giving CPR to end-stage heart failure patients. The caregivers have to deal with two important issues: first, whether CPR should be performed on these terminally ill patients at all; and second, how to hold the conversation about CPR with the patients and their relatives. The team members were eager to talk and strived to reach consensus about these ethical issues in the four group interviews held during the year of the study. The participants described how they are confronted by different views within the team on whether end-stage heart failure patients and their relatives should be involved in the decision-making on resuscitation. On the one hand, involving patients and their relatives in the decision-making can be challenging, and on the other hand, the patients have the right of self-determination on CPR. The participants mentioned several reasons for not involving end-stage heart failure patients and their relatives in the decision-making on a do not attempt resuscitation (DNAR) order. Specifically, they said that the decision-making should be based on the medical assessment only, because the chance of success is so © 2014 Nordic College of Caring Science
Struggling with issues about cardiopulmonary resuscitation small and because CPR prolongs the natural process of dying and mostly does not provide a good quality of life or a dignified and nondramatic death. These reasons are congruent with the goals of palliative care (4) and the ethical principles of beneficence and non maleficence (14). An additional reason for not including patients in resuscitation decisions, according to physicians in another study, is the poor prognosis in end-stage heart failure (15). The study participants also highly valued the patients’ right to participate in the decision-making about CPR. Some participants expressed a willingness to perform CPR even if they do not expect it to be successful, in order to respect the patient’s wishes and to increase his/ her feelings of autonomy and safety. Limited CPR is mentioned as one way to act. A recent study showed that a majority of elderly patients with severe chronic heart failure preferred longevity over quality of life, and half wished to be resuscitated if it became necessary (16). The majority of the patients in the study did not change their willingness to trade survival time or their preferences regarding CPR over time. The different views within the team about the appropriateness of CPR in terminally ill patients might be partly explained by the context of integrated heart failure and palliative care and a resulting conflict between the two approaches of continuing life-prolonging treatment (CPR) while preparing for an imminent death (17–19). Physicians at one medical clinic did not always suggest and pass over the patient’s medical care to specialised palliative care because of, among other factors, the prerequisite for inclusion in palliative care being the patient’s wish to not receive CPR (20). Palliative nurses in advanced homecare have reported that they do not perform resuscitation (21). In the present study, the team members had worked together for 1 year. Studies over a longer time are needed to examine the process of integrating the two distinct cultures of curative care and palliative care. Putting the light on the table by talking about CPR in relation to the poor prognosis and risk of sudden death is described as difficult but important and could be the start of a broader end-of-life (EOL) conversation. Participants described that a good death is more likely to occur when patients are prepared for it. All the participants stated that physicians should be responsible for informing the patients and relatives and discussing CPR with them. This is in line with national Swedish guidelines (22). However, the nurses in the study said they have more opportunity to find the right moment for such conversations, because they offer continuity of care and meet patients along the trajectory of the disease more often than the other team members do. Interprofessional cooperation where team members allow one another to cross the line of specialist when necessary could be a way to © 2014 Nordic College of Caring Science
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suit the work after the patients individuals needs and give nurses support to taking it along the way (23). Howlett emphasised that patients with heart failure experience gaps in care during the heart failure trajectory, especially when it comes to palliative care (24). One way to normalise talking about CPR is to tell a patient that they always ask whether the patient has talked to others about what to do when his/her heart stops (25). Our study indicated that the patient should not be expected to reply right away, but that going straight to the point can begin the process of the patient increasingly understanding the nature and seriousness of his/her condition. Previous studies found that stable heart failure patients have a lot of thoughts about their future, their prognosis and about dying (26). However, they have not always had an opportunity to sufficient opportunities to discuss their uncertain prognosis, the risk of sudden death and their priorities and preferences (27). Some patients have survived being close to death during exacerbations or resuscitations before and expect to do so in the future (27, 28). For many patients, heart failure is one of the multiple comorbidities typical of aging (29, 30), and the term heart failure does not carry the same overtones of mortality as does the mention of cancer (31). To sum up, earlier research found that patients with severe CHF have been close to death multiple times and survived, so they have the sense that they will survive again. Furthermore, many patients value longer life versus quality of life. These findings are in conflict due to the opinions of some team members that providers ‘know the best’ and do not take into account the ethical principle of respect for autonomy concerning to decide whether CPR should be performed or not. Although this reasoning is in line with the ethical principles of do good and do not harm, a risk for paternalism in care is obvious (c.f.14). Using a structured clinical model for ethical cardiopulmonary resuscitation decisionmaking could be a way to decrease this risk. Hayes (32) suggests a process-oriented approach that distinguishes between the technical and ethical elements of the CPR decision and takes into account that patients and families as well as team members are moral agents, each with their own ethical values. When discussing CPR, differences can be understood and consensus respectfully achieved.
Methodological considerations In this study, repeated interviews were performed to create room for a climate of open discussion and make it easier to go deeper into certain areas (33). As the interviews progressed, a climate of open discussion developed. The participants were more at easy to talk about difficult situations when meeting patients and relatives, and to confirm or disagree on what was said. The
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obtained richness of data enhanced the credibility of this study (13). To increase trustworthiness, the authors continued to discuss the results and to revise the themes and subthemes and clarify their content until agreement was achieved (13). The first author also performed a member check with the participants by discussing and validating the themes and subthemes, presented in Table 2, with the participants at the conclusion of the study. The participants affirmed that the result reflected their views, thoughts and experiences.
Conclusion Talking with patient and relatives about CPR in end-stage heart failure, as suggested in the current heart failure guidelines, is challenging in daily clinical practice. It is important to discuss the difficulties within the team when integrating palliative and curative care and to decide whether, whom, how and when to discuss CPR with individual patients and their relatives.
how to address certain topic with patient, for example, on CPR.
Acknowledgements The authors are grateful to the participants in the study.
Author contributions MB designed the study and performed the data collection. MB and TJ planned and performed the analysis and drafted the manuscript. All authors checked the manuscript for accuracy and completeness.
Ethical approval The participants gave informed consent prior to participating in the interviews. The investigation conforms with the principles outlined in the Declaration of Helsinki (Br Med J 1964;ii:177), and the study was approved by the Ethics Committee of the Medical Faculty, Ume a University, Ume a, Sweden (reference number Um 2012-461-32M).
Relevance to clinical practice This study implies that regular communication in a multidisciplinary palliative team is important. To educate all healthcare professionals should include learning how to communicate in a team. Furthermore, it would be a great improvement guidelines for HF care is more specific on
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Funding This work was supported by the R€ onnb€aret Foundation Skellefte a Municipality, the Swedish Heart and Lung Association and Konung Gustaf V:s och Drottning Victorias Stiftelse. The authors have no disclosures to make.
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15 Hurst SA, Beccera M, Perrier A, Perron NJ, Cochet S, Elger B. Including patients in resuscitation decisions in Switzerland: from doing more to doing better. J Med Ethics 2013; 39: 158–65. 16 Brunner-La RH, Rickenbacher P, Muzzarelli S, Schindler R, Maeder MT, Jeker U, Kiowski W, Leventhal ME, Pfister O, Osswald S, Pfisterer ME, Rickli H. for the TIME-CHF investigators. End-of-life preferences of elderly patients with chronic heart failure. Eur Heart J 2012; 33: 752–9. 17 Jaarsma T, Leventhal M. Special paper. End-of-life issues in cardiac patients and their families. Eur J Cardiovasc Nurs 2002; 1: 223–5. 18 Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005; 330: 1007–11. 19 Hupcey JE, Penrod J, Fenstermacher K. Review article: a model of palliative care for heart failure. Am J Hosp Palliat Care 2009; 26: 399–403. 20 Br€annstr€ om M, Forssell A, Pettersson B. Physicians’ experiences of palliative care for heart failure patients. Eur J Cardiovasc Nurs 2011; 10: 64–9. 21 Br€annstr€ om M, Brulin C, Norberg A, Boman K, Strandberg G. Being a palliative nurse for persons with severe congestive heart failure in advanced homecare. Eur J Cardiovasc Nurs 2005; 4: 314–23. 22 Ethical recommendations about CardioPulmonary Resuscitation (CPR) Etiska riktlinjer f€ or hj€art-lungr€addning (HLR) Svenska l€akares€allskapet (SLS), Svenska r adet f€ or hj€art-lungr€addning (HLR-r adet) (2013). www.sls.se 23 Barr H, Koppel I, Reeves S, Hammick M, Freeth D. Effective interprofessional education. Argument, assumption and evidence, 2006, Oxford Blackwell publishing, United Kingdom. 24 Howlett JG. Palliative care in heart failure: addressing the largest care gap. Curr Opin Cardiol 2011; 26: 144– 8.
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doi: 10.1111/scs.12174
Struggling with issues about cardiopulmonary resuscitation (CPR) for end-stage heart failure patients €nnstro € m (Senior Lecturer)1 and Tiny Jaarsma (Professor)2 Margareta Bra 1
Strategic Research Program in Health Care Sciences (SFO-V), ‘Bridging Research and Practice for Better Health’, Department of Nursing, Ume a University, Ume a, Sweden and 2Department of Social and Welfare Studies, Faculty of Health Sciences, Link€ oping University, Link€ oping, Sweden
Scand J Caring Sci; 2015; 29; 379–385 Struggling with issues about cardiopulmonary resuscitation (CPR) for end-stage heart failure patients
Background: Integrating heart failure and palliative care teams combines unique expertise from both cardiology and palliative care. However, professionals from the two arenas of life-saving cardiology and palliative care may well have different experiences with and approaches to patient care. Little is known how to optimally discuss cardiopulmonary resuscitation with patients and their relatives and what challenges are for healthcare providers. Objective: The aim of this study was to describe the experiences and thoughts of members of an integrated heart failure and palliative care team concerning talking about CPR with end-stage heart failure patients. Method: We used a descriptive qualitative design, conducting group interviews during 2011 with professionals from different disciplines working with heart failure patients over a 1-year period. A qualitative content analysis was performed to examine the interview data.
Background Patients with CHF have symptoms as severe and distressing as those of patients with cancer, but they do not have equal access to palliative care (1, 2). The course of CHF is unpredictable, making it difficult to establish when the palliative stage has been reached (3). The World Health Organization (WHO) describe that palliative care is based on a holistic approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Palliative care should be offered early in the illness, in conjunction with other therapies that are intended to prolong life (4). Correspondence to: Margareta Br€annstr€ om, Department of Nursing, Ume a University, Campus Skellefte a, 931 87 Skellefte a, Sweden. E-mail [email protected] © 2014 Nordic College of Caring Science
Results: Professional caregivers in integrated heart failure and palliative homecare are struggling with the issue of CPR of end-stage heart failure patients. They wrestle with the question of whether CPR should be performed at all in these terminally ill patients. They also feel challenged by the actual conversation about CPR with the patients and their relatives. Despite talking them about CPR with patients and relatives is difficult, the study participants described that doing so is important, as it could be the start of a broader end-of-life conversation. Conclusion: Talking with patient and relatives about CPR in end-stage heart failure, as suggested in the current heart failure guidelines, is a challenge in daily clinical practice. It is important to discuss the difficulties within the team and to decide whether, whom, how and when to talk about CPR with individual patients and their relatives. Keywords: CPR, heart failure, integrated care, palliative care, person-centred care. Submitted 31 March 2014, Accepted 17 July 2014
The advice in the recent heart failure guidelines of the European Society of Cardiology (ESC) is to include advanced care planning in palliative care, taking account of patients’ preferences regarding place of death and cardiopulmonary resuscitation (CPR) (5). Similarly, an ESC position paper states that in addition to covering issues in medical management and self-care behaviours, the education of patients and their families should include resuscitation preferences (3). The lack of clear terminology and the unpredictability of the course of HF may hinder the provision of palliative care to patients with HF. However, in accordance with the WHO definition (4), a palliative care approach is applicable earlier in the course of HF in parallel with treatment options directed at improving cardiac function and prognosis (3, 6). In addition, in considering discussion on resuscitation, it is not clear what content to discuss, how the 379
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conversation should start and by whom, and where and when the conversation should take place. In contrast to the somewhat broad recommendations in the ESC Heart failure guidelines, a recent statement of the European Heart Rhythm Association addresses more specific aspects of discussing the withdrawal of devices. For example, in that document, it is stated that ‘according to the personal relationship with the patient, the team member closest to him/her should usually be the one who initiates discussion about device deactivation with the patient and his [or her] relatives’ (7). However, it should be recognised that although this statement is specific, holding these conversations in practice is still perceived as difficult (8). In heart failure care, a team approach is increasingly advocated (9). Specifically in end-stage heart failure, several initiatives are under way to integrate palliative and heart failure teams; these initiatives include the use of models where heart failure specialist care have access to palliative care consultancy, where palliative care services assume responsibility for the basic care of the patient and his/her family or where heart failure specialists serve as consultants on specific treatment issues (3, 10, 11). Integrating heart failure and palliative care teams combines unique expertise from both cardiology and palliative care. However, professionals from the two arenas of life-saving cardiology and palliative care may well have different experiences with and approaches to patient care. These differences are likely to lead to additional challenges in deciding on the responsibility for and relevance of discussing resuscitation in advanced heart failure patients. We found no studies that illuminate professional caregivers’ experiences of ethically troubling situations when integrating palliative and curative care settings.
Aim Our aim in this study was to describe the experiences and thoughts of members of an integrated heart failure and palliative care team, during the first year that the integrated team was active, concerning talking about CPR with end-stage heart failure patients.
Method
hospital in Sweden; the unit provides patient care during the daytime on weekdays. The team members collaborate closely and meet twice a month to ensure optimal patient care. The study was part of the integrated Palliative advanced homecaRE and heart FailurE caRe (PREFER) research project during 2011–2013. The PREFER model offers specialised care, team-based care, total care, homebased care, continuity of care, person-centred care, structured care, easy access, support to relatives and support to team members. The intervention has been previously described elsewhere (10).
Participants All team members (n = 7) of the PREFER project were invited and agreed to participate in the study. The first author (MB) was responsible for taking the first contact. The team members comprise two physicians (one cardiologist and one general practitioner specialised in palliative medicine), three nurses (two district nurses and one heart failure nurse specialised in palliative care), one occupational therapist and one physiotherapist. The participants were two men and five women, ranging in age from 40 to 67 years, who had worked from 20 to 40 years. Data were collected in 2011 during the first year that the integrated team was active.
Group interviews The group interviews were held every third month, in 2011, over the first year of working together; each session lasted 60 minutes, and four group interviews were held in total. The first author conducted the group interviews at the participants’ workplace. The interviews began with an open-ended question: ‘Please tell me about your experience of ethically troubling or challenging situations in your work with severe heart failure patients’. Probing questions were then asked as each interview progressed. The group leader stimulated the discussion and ensured that all of the participants had an opportunity to speak. During the group interviews, the participants shared their experiences, thoughts and feelings with one another. They reflected on both ongoing and closed cases. All the interviews were tape-recorded and transcribed verbatim.
Design In the study, we used a qualitative descriptive design, analysing the content of four group interviews with seven participants over a 1-year period.
Setting The research context was an integrated heart failure and specialised palliative home care unit based in a community
Analysis We used qualitative content analysis to examine the interview data. Although the study participants discussed several difficult topics such as cancelling a driving licence and ordering an electric wheelchair in the group interviews, the topic of CPR was most prominent and was raised during all four interviews; the authors therefore chose to report on this topic. We used © 2014 Nordic College of Caring Science
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Table 1 Examples of qualitative content analysis Meaning unit
Condensation
Code
Subtheme
Theme
‘You cannot ask patients if they want to be resuscitated after a cardiac arrest if the medical assessment shows that the result will not be good’ ‘The patient’s wishes must be honoured; that is my guiding principle”
Uncertainties about whether it is right to involve the patients in the decision-making about CPR The patient’s wishes must be honoured
Doubts about shared decision-making
Doubting whether to involve patients and relatives in the decision-making
Being confronted by different views within the team on the patient’s right of self-determination
Patient’s right of self-determination
Emphasising the patient’s right of self-determination
qualitative content analysis to examine the interview data (12, 13). The interviews were transcribed all together after the four interviews were conducted. The interviews were read several times to obtain a sense of the whole and then coded the text, grouped the coded text that had similar content and abstracted the grouped text into subthemes. The final step was to group the subthemes into themes. Examples of the content analysis in this current study are presented in Table 1.
Results The analysis identified two themes and five subthemes. The findings will be presented by each theme and illustrated with quotations from the interviews (Table 2).
Being confronted by different views within the team on the patient’s right of self-determination Doubting whether to involve patients and relatives in the decision-making. Some of the participants described their doubts and uncertainties about whether it is right to involve the patients and their relatives in the decisionmaking about CPR, since CPR was often found to do more harm than good to the patient. To start
Table 2 Subthemes and themes in the thematic analysis Subthemes
Themes
Doubting whether to involve patients and relatives in the decision-making Emphasising the patient’s right of self-determination Clarifying the responsibility for talking with the patient about poor prognosis and resuscitation Adopting the approach of taking it along the way Becoming more open to going straight to the point
Being confronted by different views within the team on the patient’s right of self-determination Putting the light on the table
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resuscitation when the chance of success is so small was perceived as undesirable, since CPR can hinder a dignified death. Participants considered patient’s dramatic death, such as during CPR, to be undignified. CPR also is likely to prolong the natural process of dying and thus was perceived as not benefitting the patient or his/her relatives. Other thoughts about decision-making were related to responsibility, with the participants stating that the decision to use CPR should in general be based on the medical assessment only. One participant said, ‘You cannot ask patients if they want to be resuscitated after a cardiac arrest if the medical assessment shows that the result will not be good’. In addition, participants mentioned the need to take the patient’s decision-making capacity into account, since cognitive impairment is usual among end-stage heart failure patients. Emphasising the patient’s right of self-determination. Some of the participants emphasised the right of the patient to participate in the decision-making about CPR and expressed no doubt about the patient’s right to refuse resuscitation. The participants also addressed the right of the patient to wish to be resuscitated, even after being given the information that the procedure might be futile from a medical perspective. Giving CPR could be a way to create a comforting sense of security in the patient, as one participant reported, ‘for me, it is not hard to give patients security so it is important that we try’. Limiting the intensity and length of time of the CPR procedure could be a way to meet the patient’s wishes while at the same time decreasing the risk that the patient survives to experience a life of extremely low quality or be in a permanent vegetative state. One participant said, ‘The patient’s wishes must be honoured; that is my guiding principle. If you have failed with that. . . if they have not fully accepted that [the information that CPR is not advisable], you just have to accept it. Just what to do if it does occur; you may have to stop rather quickly then’.
Putting the light on the table Clarifying the responsibility for talking with the patient about poor prognosis and resuscitation. The study participants
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commented that it is important to talk about poor prognosis with end-stage heart failure patients, since it can be a way to help patients to prepare themselves for an imminent death. One of the participants said, ‘I believe you must not withhold information, because if you were given it from the start, then. . .. And perhaps it is part of patients coming to terms with the realisation that the end is coming. . . that they are going to die soon’. The participants also discussed the need for better informing patients and their families about the prognosis before talking about CPR. Furthermore, all the participants viewed that physicians are or should be responsible for informing patients and their families about the poor prognosis and discussing CPR with them. Adopting the approach of taking it along the way. The approach of taking it along the way means holding an ongoing conversation, which is a process over time rather than a single event. Referring to the difficulty of talking about CPR with patients and their relatives, the study participants emphasised the importance of proceeding with great care. They reported that instead of going straight to the point and discussing CPR, they usually ask questions about what the patient expects from the future and what care the patient wants in the event of his/her condition worsening. The participants also said that they fear doing harm – for example, causing anxiety and ‘taking away the spark of life’, as one participant’ described it. The participants went on to highlight the factors that can facilitate the opportunity to talk about CPR, such as a good relationship between patient and caregiver, the right timing, sufficient time to talk and a supportive environment. However, waiting for the optimal situation and timing can result in team members not having an opportunity to talk about CPR with patients. One participant commented, ‘That good conversation that needs time rarely happens. In my experience, it’s difficult to sit in a good room, where you are not disturbed and where both the doctor and the patient perceive the situation is safe enough to have a good conversation. Yes, a lot really needs to be done there’. It can be difficult for team members to identify the right time to talk because the patient’s viewpoint is often one of living in the here and now. The nurses in the team elaborated that they usually have more opportunities than other team members to catch the right moment because they meet patients along the trajectory of the disease more frequently. Becoming more open to going straight to the point. The participants shared their thoughts on adopting a more direct approach when talking to patients and their relatives about their preferences for CPR, for example to routinely include this topic in conversation with the healthcare provider going straight to the point by asking patients for
their views on CPR. In conversations with a patient, family members should be included where possible, to help the relatives understand the expected actions and interventions of care professionals in the event of the patient’s death. One participant said, ‘It could be good to have this conversation with patients so relatives can understand why we did not do anything, or why we tried despite knowing that we could not resuscitate the patient’. During the second group interview, one of the physicians had suggested taking a direct approach in all meetings with the patient and his/her relatives. The participants’ reflections in the subsequent group interviews revealed that in adopting such an approach, one should not expect the patient’s reply right away, but one can use the direct approach to begin the process of advance care planning. The participants also discussed the difficulties of talking about CPR jointly with the patient and his/her relatives. Patients and relatives do not want to upset each other and might protect each other by not wanting to talk about cardiac arrest and death. Team members might need to talk to the patient alone, to be sure that the patient made the decision. Some participants pointed out that one risk team members face is of listening more to the relatives and missing what the patient wants. One participant shared a personal story about a male patient, ‘He would possibly have expressed something else if I had talked only with him. But she [a close relative] took over the conversation’.
Discussion Professional caregivers in integrated heart failure and palliative homecare struggle with the issue of giving CPR to end-stage heart failure patients. The caregivers have to deal with two important issues: first, whether CPR should be performed on these terminally ill patients at all; and second, how to hold the conversation about CPR with the patients and their relatives. The team members were eager to talk and strived to reach consensus about these ethical issues in the four group interviews held during the year of the study. The participants described how they are confronted by different views within the team on whether end-stage heart failure patients and their relatives should be involved in the decision-making on resuscitation. On the one hand, involving patients and their relatives in the decision-making can be challenging, and on the other hand, the patients have the right of self-determination on CPR. The participants mentioned several reasons for not involving end-stage heart failure patients and their relatives in the decision-making on a do not attempt resuscitation (DNAR) order. Specifically, they said that the decision-making should be based on the medical assessment only, because the chance of success is so © 2014 Nordic College of Caring Science
Struggling with issues about cardiopulmonary resuscitation small and because CPR prolongs the natural process of dying and mostly does not provide a good quality of life or a dignified and nondramatic death. These reasons are congruent with the goals of palliative care (4) and the ethical principles of beneficence and non maleficence (14). An additional reason for not including patients in resuscitation decisions, according to physicians in another study, is the poor prognosis in end-stage heart failure (15). The study participants also highly valued the patients’ right to participate in the decision-making about CPR. Some participants expressed a willingness to perform CPR even if they do not expect it to be successful, in order to respect the patient’s wishes and to increase his/ her feelings of autonomy and safety. Limited CPR is mentioned as one way to act. A recent study showed that a majority of elderly patients with severe chronic heart failure preferred longevity over quality of life, and half wished to be resuscitated if it became necessary (16). The majority of the patients in the study did not change their willingness to trade survival time or their preferences regarding CPR over time. The different views within the team about the appropriateness of CPR in terminally ill patients might be partly explained by the context of integrated heart failure and palliative care and a resulting conflict between the two approaches of continuing life-prolonging treatment (CPR) while preparing for an imminent death (17–19). Physicians at one medical clinic did not always suggest and pass over the patient’s medical care to specialised palliative care because of, among other factors, the prerequisite for inclusion in palliative care being the patient’s wish to not receive CPR (20). Palliative nurses in advanced homecare have reported that they do not perform resuscitation (21). In the present study, the team members had worked together for 1 year. Studies over a longer time are needed to examine the process of integrating the two distinct cultures of curative care and palliative care. Putting the light on the table by talking about CPR in relation to the poor prognosis and risk of sudden death is described as difficult but important and could be the start of a broader end-of-life (EOL) conversation. Participants described that a good death is more likely to occur when patients are prepared for it. All the participants stated that physicians should be responsible for informing the patients and relatives and discussing CPR with them. This is in line with national Swedish guidelines (22). However, the nurses in the study said they have more opportunity to find the right moment for such conversations, because they offer continuity of care and meet patients along the trajectory of the disease more often than the other team members do. Interprofessional cooperation where team members allow one another to cross the line of specialist when necessary could be a way to © 2014 Nordic College of Caring Science
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suit the work after the patients individuals needs and give nurses support to taking it along the way (23). Howlett emphasised that patients with heart failure experience gaps in care during the heart failure trajectory, especially when it comes to palliative care (24). One way to normalise talking about CPR is to tell a patient that they always ask whether the patient has talked to others about what to do when his/her heart stops (25). Our study indicated that the patient should not be expected to reply right away, but that going straight to the point can begin the process of the patient increasingly understanding the nature and seriousness of his/her condition. Previous studies found that stable heart failure patients have a lot of thoughts about their future, their prognosis and about dying (26). However, they have not always had an opportunity to sufficient opportunities to discuss their uncertain prognosis, the risk of sudden death and their priorities and preferences (27). Some patients have survived being close to death during exacerbations or resuscitations before and expect to do so in the future (27, 28). For many patients, heart failure is one of the multiple comorbidities typical of aging (29, 30), and the term heart failure does not carry the same overtones of mortality as does the mention of cancer (31). To sum up, earlier research found that patients with severe CHF have been close to death multiple times and survived, so they have the sense that they will survive again. Furthermore, many patients value longer life versus quality of life. These findings are in conflict due to the opinions of some team members that providers ‘know the best’ and do not take into account the ethical principle of respect for autonomy concerning to decide whether CPR should be performed or not. Although this reasoning is in line with the ethical principles of do good and do not harm, a risk for paternalism in care is obvious (c.f.14). Using a structured clinical model for ethical cardiopulmonary resuscitation decisionmaking could be a way to decrease this risk. Hayes (32) suggests a process-oriented approach that distinguishes between the technical and ethical elements of the CPR decision and takes into account that patients and families as well as team members are moral agents, each with their own ethical values. When discussing CPR, differences can be understood and consensus respectfully achieved.
Methodological considerations In this study, repeated interviews were performed to create room for a climate of open discussion and make it easier to go deeper into certain areas (33). As the interviews progressed, a climate of open discussion developed. The participants were more at easy to talk about difficult situations when meeting patients and relatives, and to confirm or disagree on what was said. The
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obtained richness of data enhanced the credibility of this study (13). To increase trustworthiness, the authors continued to discuss the results and to revise the themes and subthemes and clarify their content until agreement was achieved (13). The first author also performed a member check with the participants by discussing and validating the themes and subthemes, presented in Table 2, with the participants at the conclusion of the study. The participants affirmed that the result reflected their views, thoughts and experiences.
Conclusion Talking with patient and relatives about CPR in end-stage heart failure, as suggested in the current heart failure guidelines, is challenging in daily clinical practice. It is important to discuss the difficulties within the team when integrating palliative and curative care and to decide whether, whom, how and when to discuss CPR with individual patients and their relatives.
how to address certain topic with patient, for example, on CPR.
Acknowledgements The authors are grateful to the participants in the study.
Author contributions MB designed the study and performed the data collection. MB and TJ planned and performed the analysis and drafted the manuscript. All authors checked the manuscript for accuracy and completeness.
Ethical approval The participants gave informed consent prior to participating in the interviews. The investigation conforms with the principles outlined in the Declaration of Helsinki (Br Med J 1964;ii:177), and the study was approved by the Ethics Committee of the Medical Faculty, Ume a University, Ume a, Sweden (reference number Um 2012-461-32M).
Relevance to clinical practice This study implies that regular communication in a multidisciplinary palliative team is important. To educate all healthcare professionals should include learning how to communicate in a team. Furthermore, it would be a great improvement guidelines for HF care is more specific on
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