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Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden Helene Eriksson, Gisela Andersson, Louise Olsson, Anna Milberg, Maria Friedrichsen
ABSTRACT In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on ‘‘nondecisions’’ about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had ‘‘problems holding to the decision.’’ The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was ‘‘communication barriers,’’ a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified. Keywords: decision making, focus groups, multiprofessional, palliative care, stroke units
E
ach year, approximately 25,000 individuals experience stroke in Sweden, and the average age is 76 years (Riks-Stroke, 2011). Stroke care in Sweden is based on a European agreed strategy based on Helsingborg Deklarationen 1995. Declarations
Questions or comments about this article may be directed to Helene Eriksson, MSc SRN, at [email protected]. She is a Lecturer at the Department of Social and Welfare Studies, Linkoping University, Norrko¨ping, Sweden. Gisela Andersson, MSc SRN, is an Infection Control Nurse at Vrinnevi Hospital, Norrko¨ping, Sweden. Louise Olsson, Lic MedSci SRN, is a Lecturer at the Department of Social and Welfare Studies, Linkoping University, Norrko¨ping, Sweden. Anna Milberg, MD PhD, is an Assistant Professor at the Department of Social and Welfare Studies, Linkoping University, Norrko¨ping, LAH/ Unit of Palliative Care, University Hospital, Linkoping, and Palliative Education and Research Centre in the County of Ostergotland, Sweden. Maria Friedrichsen, RN PhD, is an Associate Professor at the Department of Social and Welfare Studies, Linkoping University, Norrko¨ping, and Palliative Education and Research Centre in the County of Ostergotland, Sweden. The authors declare no conflicts of interest. Copyright B 2014 American Association of Neuroscience Nurses DOI: 10.1097/JNN.0000000000000049
specifically point out the importance of specific stroke units with multiprofessional staff. Treatment and strategies in the acute and rehabilitation phases are well described (Norrving, International Society of Internal Medicine, European Stroke Council, International Stroke Society, & WHO Regional Office for European, 2007). The need for palliative care in this population is obvious when 15% of those experiencing strokes die within 7 days (Burton, Payne, Addington-Hall, & Jones, 2010; Wee, Adams, & Eva, 2010). Sixty percent of the dying patients with stroke had symptoms (Chahine, Malik, & Davis, 2008). The most prevalent symptoms are dyspnea and pain. With palliative care consultant, the symptoms can be reduced (Mazzocato, Michel-Nemitz, Anwar, & Michel, 2010). There is increasing recognition that the principles of palliative and supportive care are important components to meet the needs of patients with diseases other than cancer, such as stroke (Payne, Burton, AddingtonHall, & Jones, 2010). However, the Swedish national policy of guidelines specifically point out the importance of palliative care for dying patients with stroke performing to introduce maximal treatment, to withhold
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life-sustaining treatment, and to discontinue life-sustaining treatment (Swedish National Board of Health and Welfare, 2009). Ethical problems have been presented regarding the care of patients with severe stroke in a permanent vegetative or minimally conscious state; the issue was often about withdrawal of life support (Boissy, Ford, Edgell, & Furlan, 2008; Saouˆt et al., 2010). Eating difficulty is another issue that raises ethical conflicts for healthcare professionals in relation to the patients’ autonomy and quality of life (Sandman, Agren Bolmsjo, & Westergren, 2008). One study concluded that physicians should carefully consider the effects of early limitations in aggressive care to avoid limiting care for patients who may survive their acute illness (Zahuranec et al., 2007). Many healthcare professionals raised questions about the perception of the care. They were concerned about their relationship with the patients’ families, the distress experienced by the families, and their own emotional trauma as carers (Saouˆt et al., 2010). When ethical questions occur, it is possible that a discussion within the team could influence the care of the patient, not necessarily to the benefit of the patient. The purpose of this article was to study the ethical dilemmas, approaches, and what consequences these issues create among healthcare professionals regarding dying patients with stroke in acute stroke units.
Methods Design In this qualitative study, we conducted focus group interviews and individual interviews and administered a questionnaire. Different healthcare professionals at stroke units participated. A content analysis based on Graneheim and Lundman (2004) was used.
Sampling and Setting A stroke unit in Sweden is an organized hospital unit that exclusively or almost exclusively cares for patients with stroke. The healthcare professional consists of a multidisciplinary specialized team that has specific training in this area. The unit should immediately start mobilization and rehabilitation of the patient with stroke and, later on, educate patients and family members about the condition (Norrving et al., 2007; Swedish National board of health and Welfare, 2009). Three hospitals, one university hospital and two general hospitals with special stroke units in the southeast of Sweden, were included in this study. There were 1,030 individuals of the 400,000 citizens who experienced stroke during 2010 (Riks-Stroke, 2011). The selected units cared for patients with stroke in various phases of their disease: newly diagnosed patients with stroke, rehabilitating patients, and dying patients with stroke. One unit used
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These authors examine a number of ethical issues that arise in the treatment of patients who have experienced a severe stroke and the consequent dilemmas created for the professionals who care for them. a palliative checklist when decisions regarding palliative care were made, whereas the others did not. According to the Swedish law, the decision to decide whether the patient is in a palliative phase or not is lying on the physicians, but they are recommended to include other team members in this decision. To grasp the variations regarding professions, gender, age, and work experience, purposeful sampling was used. To create a sense of comfort, the same professionals were interviewed in the same focus group. Social workers (n = 1), occupational therapists (n = 4), and physiotherapists (n = 5) were interviewed together in groups and are labeled ‘‘allied professionals’’ in this study. In total, eight focus group interviews were conducted: two focus groups with allied professionals (n = 10), three groups of assistant nurses (n = 13), and finally, three groups of nurses (n = 13). Their experience of care of patients experiencing severe stroke was 0.5Y38 years (median = 12 years). For logistical reasons, the physicians (n = 5) were interviewed using the same approach, but individually.
Interviews An interview guide was developed and pilot tested on two focus groups, resulting in minor changes. The questions concerned the interviewees’ experience of ethical dilemmas and stroke care in end-of-life situations. Supplementary and probing questions were used and depended on the interviewees’ individual answers. The focus interviews were conducted by three of the authors (MF, GA, and LO) at each hospital. All participants began the interview by answering a questionnaire including three background questions on their opinions and experiences of end-of-life care in stroke units (Table 1) as well as questions on sociodemographic data (Table 2). The interviews started with an informal dialogue with the purpose of creating a relaxed atmosphere. To create comfort and a permissive discussion, it was decided that the focus groups should include no more than six persons. The group participants numbered between 2 and 5 persons each time, and each interview lasted between 1 and 1.5 hours in a
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TABLE 1.
Results of the Questionnaire (n = 41)
Questions
Nurses
Physicians
Allied Professionals
Assistant Nurses
1
1
0
0
1. How do you experience caring for patient with severe stroke? (n = 41) Often easy Often rather easy
6
1
3
3
Often rather difficult
5
3
6
6
Often hard
1
0
1
4
2
0
0
1
10
2
9
10
1
1
2. The attitude to the statement: ‘‘The caring of the patients with severe stroke is satisfactory’’ (n = 36) I do not agree at all I partly agree I agree 3. The attitude to the statement: ‘‘My unit put enough resources to the care of patients with severe stroke’’ (n = 41) I do not agree at all
2
0
0
2
I partly agree
9
3
9
7
I agree
2
2
1
4
separate room at the stroke unit. One of the authors had the role of a ‘‘facilitator’’ with the responsibility of keeping the group discussion on the subject and asking questions. The other author had the role of ‘‘the transcriber’’ and observed the group, taking notes of the interview themes. The transcriber also asked supplementary questions like, ‘‘Can you tell me more? How did you feel? Can you describe more?’’ After the interview, the transcribers gave a verbal summary. The groups were also given the opportunity to comment on the result (Krueger & Casey, 2000). The individual interviews with the physicians were conducted by one author using the same kind of questions (GA or AM). All interviews were tape recorded and transcribed verbatim by the second author.
Data Analysis The qualitative data were analyzed using a content analysis method devised by Graneheim and Lundman (2004). The analysis was focused on both manifest and latent content to find the underlying meaning. The interviews were read through several times and were extracted to meaning units. The meaning units were abstracted and labeled with a code and were sorted into two categories, which constitute the manifest content. Finally, for the underlying meaning, the latent content of the categories was formulated into a theme (Table 3). The first analysis was conducted by the second author (GA). Then, the fifth author (MF) criticized it and suggested changes. Discussion continued until agreement was reached. Finally, the first author
(HE) continued the first analysis and interpreted the material with the last author (MF).
Ethical Approval The study was given ethical approval by the regional ethical review board and followed the ethical guidelines given in the Declaration of Helsinki. The heads of the three stroke units approved the study, and the trade union was informed. All the caregivers were informed that their participation was voluntary and that they could terminate their participation without any reason at any time. All collected materials in the study have been handled confidentially.
Results Forty-one respondents with different professions and experience of stroke care were interviewed in focus
TABLE 2.
Sociodemographic Data of Participants N = 41 (Women/Men)
Years of Experience of Working With Patients With Stroke (Md)
Allied professionals
10 (2/8)
2.5
Nurses
13 (1/12)
7
Profession
Physicians Assistant nurses
5 (3/2)
17
13 (1/12)
17
Note. Md = median.
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TABLE 3.
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Qualitative Content Analysis According to Graneheim and Lundman (2004)
Theme
Communication Barriers
Category
Nondecision
Codes
Problems Holding to the Decision
Unworthy tube feeding
Back to the start again
Starving to death
New opinion
Painful unnecessary examinations
New examinations
Ambiguities in the approach to next-of-kin
Undignified death
Incomplete pain relief
Ashamed for the next-of-kin
Impossible to make a status
Forget the care plan
Everyone has a chance
The tube was back again
Not easy to make a decision
Discontinuity among physicians
Death gives bad statistics
Not stand by decision Inconsequence among physician New questionable signs
groups or individually. The focus group discussions were intensive; the participants had experiences that sometimes evoked strong emotions. The individual interviews were not that intensive but dedicated. Two categories of ethical dilemmas were emerged in the analysis (Table 1): nondecisions and problems holding to the decision. The main theme was communication barriers.
Ethical Dilemmas Nondecisions The participants described different ethical decisionmaking dilemmas such as disagreement in the team about life-supporting treatments for the patients. Nutrition tasks, medical treatments, and examinations were common issues. In the first days after a severe stroke, the nutrition consisted of intravenous infusions. Some of the team members were hopeful about the patient’s survival, whereas others evaluated the situation as doubtful. Physicians described that nature must be given a chance to point out the direction of the progress or regress of the patient’s status. They did not want to make a decision about end-of-life care too early. However, if the patient were to survive this period, the situation became complicated. Nurses and assistant nurses described that a decision on how to continue with the treatment and caring of the stroke-injured patient became obvious. There were discussions on whether the patient should have nutrition by tube feeding or not. The nurses and assistant nurses on all units claimed that patients who were in a palliative phase sometimes were overtreated and that there were no trustworthy decisions on how to continue care, although other participants did not share their opinions. Physical therapists expressed specifically that no one
should starve to death, which also affected their work on assessing the patient’s status. They said that the contact with the patient relied on the nutrition. Absence of nutrition gave less opportunity for contact and physiotherapy. A lack of such treatment during the first weeks reduced the patient’s chance of recovery. It became a source of frustration with these contradictive approaches and generated decision-making problems regarding how much, how intensively, and if they should attempt to revive the patient. It’s frustrating when the physicians ask if we have any contact with the patient, simultaneously knowing that the patient is suffering from lack of nutrition. The matter of nutrition must be taken more seriously.
Allied Professionals As time went by, the absence of a common standpoint increased in significance and became more obvious when physicians were on call. The physicians in charge inherited the decision problem from the ordinary physicians and the lack of time increased the problem. That fact complicated the work for the nurses who were trying to create a nursing plan for the patient. The nurses assessed that the patient was in a palliative state and believed that the unnecessary medical examinations being done increased the patient’s suffering. Some of the examination results did not appear until after the patient had died. According to the nurses, this created an atmosphere of insecurity and chaos for those involved, even for the next-of-kin. After a while, during the interview, the assistant nurses felt more relaxed and described their experiences more deeply as well as their feelings of doing a ‘‘bad job.’’
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I feel sorry for the patients. We had a patient that had had several strokes, and this time, he was severely ill and we had to take blood samples. A nurse from the intensive care unit came to help us as we couldn’t get any blood. 16 test-tubes! And we had to hold him, me and another colleague, so that she could insert the needle. Afterwards, someone told us that it took two weeks before we got the answers. The nurse tried to say no, but the physician didn’t give up. They had to do it. And just a few days after these blood samples were taken, the patient died.
Physician When the team did not work for the same goals or cooperated with the next-of-kin, nurses and assistant nurses felt dissatisfied. An unwanted consequence of strategies made staff appear less trustworthy, and they were even questioned by the next-of-kin. How long a goal remains depends on the physician who is on duty; it can vary from week to week. A physician can order everything, infusions, and antibiotics and even put a tube down. And then another physician goes on duty on Monday, and every medical intervention is cancelled. It’s hard to stand up in front of the next of kin and try to explain when the physicians sometimes explain it in an inappropriate way. I think that issue can be hard.
I felt so bad. It’s an outrage. It’s like a violation.
Assistant Nurses Another consequence was that patients did not receive pain relief until a decision about palliative care was made. This decision was sometimes made when there were only a few hours or days left. This was a problem for assistant nurses when they cared for the patient as they closely watched patients experiencing pain. Another problem was where to put the dying patient with stroke. Sometimes, they had so many severely ill patients that they did not have a single room for the patient. Because of this kind of problem, some of the team members felt frustration and could not achieve good nursing.
Problems Holding to the Decision When a decision was made about palliative care, other problems emerged. Nurses and assistant nurses said that the physicians could revise the decision if the patient just blinked his or her eyes or if the next-of-kin begged for treatment. They could not understand this but had to go through this regardless of their own opinions. This revision created insecurity for all those involved with the patient. The nurses observed that grief transition work had started for the next-of-kin in which the nurses were highly involved. When a revision was made, the next-of-kin suddenly had to change from considering their family member as dying to recovering. This created hope again but decreased the credibility of the other team members who had tried to support the family in their sorrow. Physicians thought it was important to be flexible for a reviewing of the decision as it was easier to treat than not to treat, which was in accordance with their occupation. What can I sayVas a physician, you don’t need to treat, but often it feels more ethical to treat.
Assistant Nurses The nurses and assistant nurses sometimes believed that the decisions taken were not the best for the patient and that care became undignified. The team could divide itself into groups with separate beliefs on what was best for the patient. Allied professionals expressed that it was hard to watch when the patient not could end their life peacefully, whereas other continued with preventing physiotherapy. Nurses and assistant nurses claimed that it could be an act of benevolence to let someone die. However, nurses explained that, if the interventions were excessive and undignified for the patient, they could choose not to carry out the set intervention. The dying patient had his next of kin sitting with him; the physician wanted us to start measuring blood pressure, which immediately became alarming as the blood pressure decreased. The next of kin became worried and asked me what was wrong and what to do. In this case, I turned the monitor off and explained in a friendly way that it was an unnecessary thing to do. Then after a while, the next of kin became calm. It’s a nurse’s duty to make judgments and acts.
Nurses Another ethical dilemma was how to create acceptance within the team when the nutrition strategy was changed, often related to a percutaneous endoscopic gastrostomy implant. Nurses and assistant nurses claimed that this act just enabled the patient to move to another unit/accommodation no matter whether the patient was dying or not. Ethically, they had problems to hold on to such a decision and explained it with the clinics, wishing to achieve good survival rates.
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Mortality is somehow a measure of quality in the department, low mortality rate, the better care. It is good of course, but sometimes it feels like the life-sustaining measures are postponing decisions, and the patient dies after leaving the department after all.
Communication Barriers: The Underlying Problem There were several descriptions of barriers with communication leading to non-decision-making and problems holding to the decisions. The problem with nutrition issues was not discussed between different professionals although it had been an ongoing problem during the years. Physicians described the importance of the rehabilitation rounds. They claimed it was an opportunity for everyone in the team to be a part of the goal for the patient and share their experiences of the patient’s capacity. However, the assistant nurses did not always prioritize the rehabilitation rounds because of the high level of medical content. They felt insecure as they did not know the particular physician and as the physicians varied every week. Instead, information on the patients was delivered by the assistant nurses to a well-selected nurse, someone who they knew was thinking more like them. We can’t influence the physicians, they never have time to speak to us. And then it depends on which nurse you talk to. What we say, and so on. It’s so different depending on which nurse you talk to. Some of them want to do exactly what the doctors say, and some of them are with us, or how to express it (laugh).
Assistant Nurses Physicians and nurses mentioned that colleagues from other cultures did not have the same view of the meaning of palliative care. Instead, their experience was that foreign colleagues claimed that a physician’s primary duty was to keep the patient alive and that palliative care was an active help to die. Specialists who come from other countries have a difference in sight and perspective on this kind of matter. To get them to think like we do..., most of these physicians want to do everything they can, and some of them have problems understanding that you can discontinue the treatment.
Physician The decision and discussion to go from curative care to a palliative approach were much easier if the patient was comorbidity ill. If the patient were young, the decision became much harder to do. However, there were
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no common values about comorbidity or age, and there were no routines to hold on to. It was up to the present physician to decide on treatment. However, the lack of specialist physicians and their discontinuity around the patient were obvious, and nurses felt that this problem delayed the decision. We don’t have the same physicians; they are here maybe one week or two, then a new physician shows up and this new system begins. I think some of them think it’s unpleasant to make decisions about the palliative checklist. There is no one who takes the ultimate responsibility.
Nurses Every group expressed the problem that appeared if the family around the patient had a conflict; then, the decision problems and the communication problems were increased. Nurses felt that it was hard to know which one of the next-of-kin they should inform and which one of them could tell them honestly about the patient’s wishes. Physicians said that family conflicts and different opinions between team members could lead to problems for the whole unit. I cannot say they (family members) don’t disagree with each other, but they sometimes have various opinions and expectations for the patients’ recoveryIsometimes based on different experiences expressed by different members in the stroke team.
Physician According to some physicians, nurses, and assistant nurses, a ‘‘palliative checklist’’ (Appendix) describing the skills of palliative care and symptom management facilitated the communication and care of the dying patient. The purpose and goal became obvious, and all members of the team participated. A palliative checklist undoubtedly provided support for the communication and the decisions that had to be taken. It was considered easier to have something concrete to follow, which facilitated the organization around the patient. We have a checklist, and I think the benefits are great for the patients. We don’t ‘‘overtreat’’; we do what we can. You don’t begin the intravenous antibiotic treatment as a routine because the patient is on an internal medicine ward. You try to plan ahead and an acceptance develops.
Discussion The main theme of the current study was communication barriers, a consequence when absences of common
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value system appear and decision-making problems became a fact. Nondecisions and problems holding to the decision are the consequences of the communication barriers. Those categories create the ethical dilemmas that occur in the healthcare professional’s working day. All of the team was affected, some with frustration and a sense of futility; others felt that they tricked the next-ofkin. The absence of common goals gave rise to individually created strategies and solutions with the purpose to create good care. Nondecisions were often related to life-supporting treatments, where no mutual goals and the absence of communication tools became obvious. Communication failure is an extremely common cause of inadvertent harm for the patient (Leonard, Graham, & Bonacum, 2004). Team ambiguity may lead to different messages to patient and family members regarding the goal of the care. Some of the team members might be hopeful about the patients’ survival, whereas others evaluate the situation as hopeless. This contradiction was often related to nutrition and fluid. The allied professionals felt that absence of fluid and nutrition reduced the chances for recovery. A nutrition study on 104 stroke-injured patients showed that there was a higher stress reaction and increased frequency of bedsores and infections among the malnourished patients with stroke (Davalos et al., 1996). These facts could explain the feeling of frustration that the allied professionals felt when they valued their patients’ capacity and status simultaneously, knowing that the patient was malnourished. However, there were ethical disagreements among the respondents about carrying out a percutaneous endoscopic gastrostomy surgery on a dying patient. Several of the team members expressed that time was one of the problems that they had to deal with. The absence of time generated a need to prioritize among the patients on the unit and that prioritizing didn’t always benefit the dying patient with stroke. The time limitation was also a reason to the lack for discussion of deeper ethical dilemmas, daily experienced thoughts, and evaluations. In one study, a standardized, multiprofessional, evidence-based care plan was used in stroke units. The conclusion showed time efficient and increase in knowledge of the guidelines (Poder, Fogelberg-Dahm, & Wadensten, 2011). The essential problem about nondecisions could also be a consequence of the physician’s ethical code that describes a practice that respects the life, dignity, and liberty of the individual (College des Medecins du Quebec, 2002). The physician’s primary obligation is to act for the patients’ medical benefit (Beauchamp & Childress, 2009). This knowledge could explain the difficulties that appear when decisions should be made. This study shows the need of knowledge about palliative care for all team members; it also shows the physicians need of support for decision
making of end-of-life care in those stroke units. By common goals and respectful communication with each other, the palliative approach and skills enhance the teamwork (Stone et al., 2009). Another qualitative study in the United Kingdom highlights the palliative end-of-life care for patients with stroke not expected to recover from stroke. The results were similar with this study, uncertainty when initiating transition to palliative care, and issues were identified with the integration of acute stroke care and palliative care (Gardiner, Harrison, Ryan, & Jones, 2013). Another ethical dilemma that appeared was related to problems holding to the decision. If a decision was made about palliative care and ‘‘do not resuscitate,’’ it could be revised because of small changes in patients’ status, such as a blink of the eyes. When a care plan was designed with a focus on symptom control and quality of life, the nursing team started the process of transition for the next-of-kin with the goal of a dignified death for the patient. When the decision was revised and new tests and treatments started again, nurses and assistant nurses felt that it was difficult to explain the shift from care of a dying patient to acute care again to the next-of-kin. These new interventions created a sense of distrust from the next-of-kin, and the team around the dying patient with stroke felt embarrassed that they had started the transition process. Previous studies have showed that honesty and clarity of information were of great importance and that the next-of-kin were keen to see a peaceful, meaningful, and dignified death (Payne, 2009). Mutual trust is a way of handling ethical problems by administering care with the patients best interesting at heart (Rejno, Berg, & Danielson, 2012). Nurses and assistant nurses who did not share physicians’ decisions made their own judgments and decisions, which could be questioned. Communication, respect, and understanding within the team are essential when caring for dying patients. The decision-making problem was based on communication barriers. Some of the described ethical problems were also culture-based ethical problems. The physicians in the current study felt that some colleagues from other nations did not share their idea of palliative care. This was also seen in a study where ethnic differences regarding ‘‘do-not-resuscitate’’ orders became obvious (Zahuranec et al., 2009). Diversity of opinion is usually a good thing, but it should not be revealed to patients or family members. Recognizing when treatment is futile has important benefits as it curtails distressing interventions and therapy when there is no hope of recovery; it enables families to prepare for the death of the patient and facilitates the ethical principle of justice and the reallocation of resources to others (Ridley, 2002). Previous study shows that the use of standardized tools and behavior is an effective
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strategy to enhance teamwork and reduce conflicts (Leonard et al., 2004). Liverpool care pathway and other kinds of palliative checklists might support the whole team in these issues (Appendix; Anderson, 2002). Usually, physicians consider the patient’s own wishes to be of importance when decisions are made (Rydvall, Bergenheim, & Lynoe, 2007). However, after a severe stroke, the patient’s status could reduce or inhibit the capacity to act autonomously, and that fact leaves the decision-making dilemma about palliative care to the physician. The decision making is affected by legal barriers, cultural values, and emotional barriers (Aita, Takahashi, Miyata, Kai, & Finucane, 2007). The results of this study show that healthcare professionals experience that the relationship in the family is essential; understanding the patient’s own wishes facilitated decision making of palliative care and reduced the emotional barriers for the physicians.
Limitations and Methodological Considerations Four interviewers with different styles of interviewing behavior and varying influences on the respondents were involved in the study. However, because of this, the effects of a single author’s preunderstanding could be reduced and thus increase credibility. The two authors (HE and MF) analyzed all the interviews. The physicians’ interviews were performed individually for reasons of convenience, and this turned out to be strength in the results. The physicians who had the main roles in the matter could honestly declare their experiences and feelings in confidence. Even if stroke care and treatment are based on a structured program (European agreement), it is necessary with further investigations to be able to transfer the results to other similar stroke units in other countries.
Conclusion and Implications There are several ethical questions in multiprofessional stroke care units, for example, regarding decision making about palliative care. Specialized stroke physicians need to learn palliative medicine to get the skills required to identify a dying patient with stroke and to make an end-of-life decision. A standardized tool and common strategies in the team facilitate communication and are necessary to create secure, trustful, and meaningful care. An individual palliative care plan for the dying patient with stroke that is designed in collaboration with the next-of-kin would probably increase the quality of care given. This care plan should be implemented in the team and be respected by all professionals involved. Exceptions from the plan should be discussed in the whole team and be taken under careful consideration. Continuity among the physicians who make
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primary decisions would probably prevent insecure rapid interventions. A mutual value system and communication tools might reduce the risk of communication barriers.
Acknowledgments We wish to thank the informants who openly shared their experiences and the head of the sections who made the informants available for the interviews. We also wish to thank Ella and Henry Sta˚hl’s foundation and the National Stroke Association who financially supported this project.
References Aita, K., Takahashi, M., Miyata, H., Kai, I., & Finucane, T. E. (2007). Physicians’ attitudes about artificial feeding in older patients with severe cognitive impairment in Japan: A qualitative study. BMC Geriatrics, 7, 22. Anderson, R., Biernat, K., & Rehm, J. (2002). A pathway to advancing end-of-life education. Journal of Palliative Medicine, 5(3), 428Y431. Beauchamp, T. L., & Childress, J. F. (2009). Principles of biomedical ethics (6th ed.). New York, NY: Oxford University Press. Boissy, A. R., Ford, P. J., Edgell, R. C., & Furlan, A. J. (2008). Ethics consultations in stroke and neurological disease: A 7-year retrospective review. Neurocritical Care, 9(3), 394Y399. doi:10.1007/s12028-008-9117-4 Burton, C. R., Payne, S., Addington-Hall, J., & Jones, A. (2010). The palliative care needs of acute stroke patients: A prospective study of hospital admissions. Age and Ageing, 39(5), 554Y559. doi:10.1093/ageing/afq077 Chahine, L. M., Malik, B., & Davis, M. (2008). Palliative care needs of patients with neurologic or neurosurgical conditions. European Journal of Neurology : Official Journal of the European Federation of Neurological Societies, 15(12), 1265Y1272. doi:10.1111/j.1468-1331.2008.02319.x College des Medecins du Quebec. (2002). Physicians ethics code. Retrieved from http://www.cmq.org/~/media/132E0C657730 482DBEE837D7473D439D.ashx Davalos, A., Ricart, W., Gonzalez-Huix, F., Soler, S., Marrugat, J., Molins, A., I. Genis, D. (1996). Effect of malnutrition after acute stroke on clinical outcome. Stroke: A Journal of Cerebral Circulation, 27(6), 1028Y1032. Gardiner, C., Harrison, M., Ryan, T., & Jones, A. (2013). Provision of palliative and end-of-life care in stroke units: A qualitative study. Palliative Medicine, 27, 855Y860. doi:10 .1177/0269216313483846 Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105Y112. doi:10.1016/j.nedt.2003.10.001 Krueger, R. A., & Casey, M. A. (2000). Focus groups : A practical guide for applied research (3rd ed.). Thousand Oaks, CA: Sage Publications. Leonard, M., Graham, S., & Bonacum, D. (2004). The human factor: The critical importance of effective teamwork and communication in providing safe care. Quality and Safety in Health Care, 13(Suppl 1), i85Yi90. doi:10.1136/qhc.13.suppl_1.i85 Mazzocato, C., Michel-Nemitz, J., Anwar, D., & Michel, P. (2010). The last days of dying stroke patients referred to a
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Journal of Neuroscience Nursing palliative care consult team in an acute hospital. European Journal of Neurology: Official Journal of the European Federation of Neurological Societies, 17(1), 73Y77. doi:10.1111/ j.1468-1331.2009.02744.x Norrving, B., International Society of Internal Medicine, European Stroke Council, International Stroke Society, & WHO Regional Office for European. (2007). The 2006 Helsingborg consensus conference on European stroke strategies: Summary of conference proceedings and background to the 2nd helsingborg declaration. International Journal of Stroke: Official Journal of the International Stroke Society, 2(2), 139Y143. doi:10 .1111/j.1747-4949.2007.00109.x Payne, S. (2009). There is more to care for the dying than handholding. Nursing Times, 105(46), 27. Payne, S., Burton, C., Addington-Hall, J., & Jones, A. (2010). End-of-life issues in acute stroke care: A qualitative study of the experiences and preferences of patients and families. Palliative Medicine, 24(2), 146Y153. doi:10.1177/02692163093 50252 Poder, U., Fogelberg-Dahm, M., & Wadensten, B. (2011). Implementation of a multi-professional standardized care plan in electronic health records for the care of stroke patients. Journal of Nursing Management, 19(6), 810Y819. doi:10.1111/j.13652834.2011.01220.x; 10.1111/j.1365-2834.2011.01220.x Rejno, A., Berg, L., & Danielson, E. (2012). Ethical problems: In the face of sudden and unexpected death. Nursing Ethics, 19(5), 642Y653. doi:10.1177/0969733011412099 Ridley, S. (2002). Functional outcome after critical illness. Care of the Critically Ill, 18(2), 44Y47. Riks-Stroke. (2011). Analyserande rapporter. Retrieved from http:// www.riks-stroke.org/index.php?content=analyser Rydvall, A., Bergenheim, T., & Lynoe, N. (2007). Decision making in a life-threatening cerebral condition: A comparative study of the ethical reasoning of intensive care unit physicians and
neurosurgeons. Acta Anaesthesiologica Scandinavica, 51(10), 1338Y1343. doi:10.1111/j.1399-6576.2007.01452.x Sandman, L., Agren Bolmsjo, I., & Westergren, A. (2008). Ethical considerations of refusing nutrition after stroke. Nursing Ethics, 15(2), 147Y159. doi:10.1177/0969733007086013 Saouˆt, V., Ombredane, M. P., Mouillie, J. M., Marteau, C., Mathe´, J. F., & Richard, I. (2010). Patients in a permanent vegetative state or minimally conscious state in the maineet-loire county of France: A cross-sectional, descriptive study. Annals of Physical and Rehabilitation Medicine, 53(2), 96Y104. Stone, S. C., Abbott, J., McClung, C. D., Colwell, C. B., Eckstein, M., & Lowenstein, S. R. (2009). Paramedic knowledge, attitudes, and training in end-of-life care. Prehospital and Disaster Medicine: Official Journal of the National Association of EMS Physicians and the World Association for Emergency and Disaster Medicine in Association with the Acute Care Foundation, 24(6), 529Y534. Swedish National Board of Health and Welfare. (2009). Nationella riktlinjer f o¨r stroke strokesjukva˚rd. Retrieved from http://www .socialstyrelsen.se/nationellariktlinjerforstrokesjukvard Wee, B., Adams, A., & Eva, G. (2010). Palliative and end-of-life care for people with stroke. Current Opinion in Supportive and Palliative Care, 4(4), 229Y232. doi:10.1097/SPC.0b01 3e32833ff4f8 Zahuranec, D. B., Brown, D. L., Lisabeth, L. D., Gonzales, N. R., Longwell, P. J., Smith, M. A., I. Morgenstern, L. B. (2007). Early care limitations independently predict mortality after intracerebral hemorrhage. Neurology, 68(20), 1651Y1657. doi:10.1212/01.wnl.0000261906.93238.72 Zahuranec, D. B., Brown, D. L., Lisabeth, L. D., Gonzales, N. R., Longwell, P. J., Smith, M. A., I. Morgenstern, L. B. (2009). Ethnic differences in do-not-resuscitate orders after intracerebral hemorrhage. Critical Care Medicine, 37(10), 2807Y2811. doi:10.1097/CCM.0b013e3181a56755
APPENDIX. Checklist: End of Life Selected parts of the checklist with 17 sections from the Swedish National Guidelines: Palliative Care, 2012Y2014 (Freely translated by Helene Eriksson) 1. The physician makes a medical judgment of the patient’s condition and makes the decision of palliative care. 2. The physician conducts an informative break point dialog with the patient and his or her next-of-kin. The dialog and the break point judgment are documented in the medical record. 3. The physician stops all of the medical treatments, including intravenous and tube feeding which do not have any symptomatic benefit for the patients in this part of life. 4. The physician prescribes ‘‘when needed’’ medical treatment against wheezing, breathlessness confusion, nausea, pain, and anxiety. 5. The physician formulates a treatment strategy, for example, no CPR and how to manage further examinations and tests (if any should be performed). This strategy is communicated with the healthcare professionals and the next-of-kin. 6. (8) The team stops nursing actions that do not benefit the patient in this part of life, for example, temperature, pulse, and blood pressure measurements. (http://www.cancercentrum.se/PageFiles/3493/NatVP_Palliativv%C3%A5rd2012_kortversion.pdf)
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Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden Helene Eriksson, Gisela Andersson, Louise Olsson, Anna Milberg, Maria Friedrichsen
ABSTRACT In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on ‘‘nondecisions’’ about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had ‘‘problems holding to the decision.’’ The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was ‘‘communication barriers,’’ a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified. Keywords: decision making, focus groups, multiprofessional, palliative care, stroke units
E
ach year, approximately 25,000 individuals experience stroke in Sweden, and the average age is 76 years (Riks-Stroke, 2011). Stroke care in Sweden is based on a European agreed strategy based on Helsingborg Deklarationen 1995. Declarations
Questions or comments about this article may be directed to Helene Eriksson, MSc SRN, at [email protected]. She is a Lecturer at the Department of Social and Welfare Studies, Linkoping University, Norrko¨ping, Sweden. Gisela Andersson, MSc SRN, is an Infection Control Nurse at Vrinnevi Hospital, Norrko¨ping, Sweden. Louise Olsson, Lic MedSci SRN, is a Lecturer at the Department of Social and Welfare Studies, Linkoping University, Norrko¨ping, Sweden. Anna Milberg, MD PhD, is an Assistant Professor at the Department of Social and Welfare Studies, Linkoping University, Norrko¨ping, LAH/ Unit of Palliative Care, University Hospital, Linkoping, and Palliative Education and Research Centre in the County of Ostergotland, Sweden. Maria Friedrichsen, RN PhD, is an Associate Professor at the Department of Social and Welfare Studies, Linkoping University, Norrko¨ping, and Palliative Education and Research Centre in the County of Ostergotland, Sweden. The authors declare no conflicts of interest. Copyright B 2014 American Association of Neuroscience Nurses DOI: 10.1097/JNN.0000000000000049
specifically point out the importance of specific stroke units with multiprofessional staff. Treatment and strategies in the acute and rehabilitation phases are well described (Norrving, International Society of Internal Medicine, European Stroke Council, International Stroke Society, & WHO Regional Office for European, 2007). The need for palliative care in this population is obvious when 15% of those experiencing strokes die within 7 days (Burton, Payne, Addington-Hall, & Jones, 2010; Wee, Adams, & Eva, 2010). Sixty percent of the dying patients with stroke had symptoms (Chahine, Malik, & Davis, 2008). The most prevalent symptoms are dyspnea and pain. With palliative care consultant, the symptoms can be reduced (Mazzocato, Michel-Nemitz, Anwar, & Michel, 2010). There is increasing recognition that the principles of palliative and supportive care are important components to meet the needs of patients with diseases other than cancer, such as stroke (Payne, Burton, AddingtonHall, & Jones, 2010). However, the Swedish national policy of guidelines specifically point out the importance of palliative care for dying patients with stroke performing to introduce maximal treatment, to withhold
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life-sustaining treatment, and to discontinue life-sustaining treatment (Swedish National Board of Health and Welfare, 2009). Ethical problems have been presented regarding the care of patients with severe stroke in a permanent vegetative or minimally conscious state; the issue was often about withdrawal of life support (Boissy, Ford, Edgell, & Furlan, 2008; Saouˆt et al., 2010). Eating difficulty is another issue that raises ethical conflicts for healthcare professionals in relation to the patients’ autonomy and quality of life (Sandman, Agren Bolmsjo, & Westergren, 2008). One study concluded that physicians should carefully consider the effects of early limitations in aggressive care to avoid limiting care for patients who may survive their acute illness (Zahuranec et al., 2007). Many healthcare professionals raised questions about the perception of the care. They were concerned about their relationship with the patients’ families, the distress experienced by the families, and their own emotional trauma as carers (Saouˆt et al., 2010). When ethical questions occur, it is possible that a discussion within the team could influence the care of the patient, not necessarily to the benefit of the patient. The purpose of this article was to study the ethical dilemmas, approaches, and what consequences these issues create among healthcare professionals regarding dying patients with stroke in acute stroke units.
Methods Design In this qualitative study, we conducted focus group interviews and individual interviews and administered a questionnaire. Different healthcare professionals at stroke units participated. A content analysis based on Graneheim and Lundman (2004) was used.
Sampling and Setting A stroke unit in Sweden is an organized hospital unit that exclusively or almost exclusively cares for patients with stroke. The healthcare professional consists of a multidisciplinary specialized team that has specific training in this area. The unit should immediately start mobilization and rehabilitation of the patient with stroke and, later on, educate patients and family members about the condition (Norrving et al., 2007; Swedish National board of health and Welfare, 2009). Three hospitals, one university hospital and two general hospitals with special stroke units in the southeast of Sweden, were included in this study. There were 1,030 individuals of the 400,000 citizens who experienced stroke during 2010 (Riks-Stroke, 2011). The selected units cared for patients with stroke in various phases of their disease: newly diagnosed patients with stroke, rehabilitating patients, and dying patients with stroke. One unit used
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These authors examine a number of ethical issues that arise in the treatment of patients who have experienced a severe stroke and the consequent dilemmas created for the professionals who care for them. a palliative checklist when decisions regarding palliative care were made, whereas the others did not. According to the Swedish law, the decision to decide whether the patient is in a palliative phase or not is lying on the physicians, but they are recommended to include other team members in this decision. To grasp the variations regarding professions, gender, age, and work experience, purposeful sampling was used. To create a sense of comfort, the same professionals were interviewed in the same focus group. Social workers (n = 1), occupational therapists (n = 4), and physiotherapists (n = 5) were interviewed together in groups and are labeled ‘‘allied professionals’’ in this study. In total, eight focus group interviews were conducted: two focus groups with allied professionals (n = 10), three groups of assistant nurses (n = 13), and finally, three groups of nurses (n = 13). Their experience of care of patients experiencing severe stroke was 0.5Y38 years (median = 12 years). For logistical reasons, the physicians (n = 5) were interviewed using the same approach, but individually.
Interviews An interview guide was developed and pilot tested on two focus groups, resulting in minor changes. The questions concerned the interviewees’ experience of ethical dilemmas and stroke care in end-of-life situations. Supplementary and probing questions were used and depended on the interviewees’ individual answers. The focus interviews were conducted by three of the authors (MF, GA, and LO) at each hospital. All participants began the interview by answering a questionnaire including three background questions on their opinions and experiences of end-of-life care in stroke units (Table 1) as well as questions on sociodemographic data (Table 2). The interviews started with an informal dialogue with the purpose of creating a relaxed atmosphere. To create comfort and a permissive discussion, it was decided that the focus groups should include no more than six persons. The group participants numbered between 2 and 5 persons each time, and each interview lasted between 1 and 1.5 hours in a
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TABLE 1.
Results of the Questionnaire (n = 41)
Questions
Nurses
Physicians
Allied Professionals
Assistant Nurses
1
1
0
0
1. How do you experience caring for patient with severe stroke? (n = 41) Often easy Often rather easy
6
1
3
3
Often rather difficult
5
3
6
6
Often hard
1
0
1
4
2
0
0
1
10
2
9
10
1
1
2. The attitude to the statement: ‘‘The caring of the patients with severe stroke is satisfactory’’ (n = 36) I do not agree at all I partly agree I agree 3. The attitude to the statement: ‘‘My unit put enough resources to the care of patients with severe stroke’’ (n = 41) I do not agree at all
2
0
0
2
I partly agree
9
3
9
7
I agree
2
2
1
4
separate room at the stroke unit. One of the authors had the role of a ‘‘facilitator’’ with the responsibility of keeping the group discussion on the subject and asking questions. The other author had the role of ‘‘the transcriber’’ and observed the group, taking notes of the interview themes. The transcriber also asked supplementary questions like, ‘‘Can you tell me more? How did you feel? Can you describe more?’’ After the interview, the transcribers gave a verbal summary. The groups were also given the opportunity to comment on the result (Krueger & Casey, 2000). The individual interviews with the physicians were conducted by one author using the same kind of questions (GA or AM). All interviews were tape recorded and transcribed verbatim by the second author.
Data Analysis The qualitative data were analyzed using a content analysis method devised by Graneheim and Lundman (2004). The analysis was focused on both manifest and latent content to find the underlying meaning. The interviews were read through several times and were extracted to meaning units. The meaning units were abstracted and labeled with a code and were sorted into two categories, which constitute the manifest content. Finally, for the underlying meaning, the latent content of the categories was formulated into a theme (Table 3). The first analysis was conducted by the second author (GA). Then, the fifth author (MF) criticized it and suggested changes. Discussion continued until agreement was reached. Finally, the first author
(HE) continued the first analysis and interpreted the material with the last author (MF).
Ethical Approval The study was given ethical approval by the regional ethical review board and followed the ethical guidelines given in the Declaration of Helsinki. The heads of the three stroke units approved the study, and the trade union was informed. All the caregivers were informed that their participation was voluntary and that they could terminate their participation without any reason at any time. All collected materials in the study have been handled confidentially.
Results Forty-one respondents with different professions and experience of stroke care were interviewed in focus
TABLE 2.
Sociodemographic Data of Participants N = 41 (Women/Men)
Years of Experience of Working With Patients With Stroke (Md)
Allied professionals
10 (2/8)
2.5
Nurses
13 (1/12)
7
Profession
Physicians Assistant nurses
5 (3/2)
17
13 (1/12)
17
Note. Md = median.
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TABLE 3.
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Qualitative Content Analysis According to Graneheim and Lundman (2004)
Theme
Communication Barriers
Category
Nondecision
Codes
Problems Holding to the Decision
Unworthy tube feeding
Back to the start again
Starving to death
New opinion
Painful unnecessary examinations
New examinations
Ambiguities in the approach to next-of-kin
Undignified death
Incomplete pain relief
Ashamed for the next-of-kin
Impossible to make a status
Forget the care plan
Everyone has a chance
The tube was back again
Not easy to make a decision
Discontinuity among physicians
Death gives bad statistics
Not stand by decision Inconsequence among physician New questionable signs
groups or individually. The focus group discussions were intensive; the participants had experiences that sometimes evoked strong emotions. The individual interviews were not that intensive but dedicated. Two categories of ethical dilemmas were emerged in the analysis (Table 1): nondecisions and problems holding to the decision. The main theme was communication barriers.
Ethical Dilemmas Nondecisions The participants described different ethical decisionmaking dilemmas such as disagreement in the team about life-supporting treatments for the patients. Nutrition tasks, medical treatments, and examinations were common issues. In the first days after a severe stroke, the nutrition consisted of intravenous infusions. Some of the team members were hopeful about the patient’s survival, whereas others evaluated the situation as doubtful. Physicians described that nature must be given a chance to point out the direction of the progress or regress of the patient’s status. They did not want to make a decision about end-of-life care too early. However, if the patient were to survive this period, the situation became complicated. Nurses and assistant nurses described that a decision on how to continue with the treatment and caring of the stroke-injured patient became obvious. There were discussions on whether the patient should have nutrition by tube feeding or not. The nurses and assistant nurses on all units claimed that patients who were in a palliative phase sometimes were overtreated and that there were no trustworthy decisions on how to continue care, although other participants did not share their opinions. Physical therapists expressed specifically that no one
should starve to death, which also affected their work on assessing the patient’s status. They said that the contact with the patient relied on the nutrition. Absence of nutrition gave less opportunity for contact and physiotherapy. A lack of such treatment during the first weeks reduced the patient’s chance of recovery. It became a source of frustration with these contradictive approaches and generated decision-making problems regarding how much, how intensively, and if they should attempt to revive the patient. It’s frustrating when the physicians ask if we have any contact with the patient, simultaneously knowing that the patient is suffering from lack of nutrition. The matter of nutrition must be taken more seriously.
Allied Professionals As time went by, the absence of a common standpoint increased in significance and became more obvious when physicians were on call. The physicians in charge inherited the decision problem from the ordinary physicians and the lack of time increased the problem. That fact complicated the work for the nurses who were trying to create a nursing plan for the patient. The nurses assessed that the patient was in a palliative state and believed that the unnecessary medical examinations being done increased the patient’s suffering. Some of the examination results did not appear until after the patient had died. According to the nurses, this created an atmosphere of insecurity and chaos for those involved, even for the next-of-kin. After a while, during the interview, the assistant nurses felt more relaxed and described their experiences more deeply as well as their feelings of doing a ‘‘bad job.’’
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I feel sorry for the patients. We had a patient that had had several strokes, and this time, he was severely ill and we had to take blood samples. A nurse from the intensive care unit came to help us as we couldn’t get any blood. 16 test-tubes! And we had to hold him, me and another colleague, so that she could insert the needle. Afterwards, someone told us that it took two weeks before we got the answers. The nurse tried to say no, but the physician didn’t give up. They had to do it. And just a few days after these blood samples were taken, the patient died.
Physician When the team did not work for the same goals or cooperated with the next-of-kin, nurses and assistant nurses felt dissatisfied. An unwanted consequence of strategies made staff appear less trustworthy, and they were even questioned by the next-of-kin. How long a goal remains depends on the physician who is on duty; it can vary from week to week. A physician can order everything, infusions, and antibiotics and even put a tube down. And then another physician goes on duty on Monday, and every medical intervention is cancelled. It’s hard to stand up in front of the next of kin and try to explain when the physicians sometimes explain it in an inappropriate way. I think that issue can be hard.
I felt so bad. It’s an outrage. It’s like a violation.
Assistant Nurses Another consequence was that patients did not receive pain relief until a decision about palliative care was made. This decision was sometimes made when there were only a few hours or days left. This was a problem for assistant nurses when they cared for the patient as they closely watched patients experiencing pain. Another problem was where to put the dying patient with stroke. Sometimes, they had so many severely ill patients that they did not have a single room for the patient. Because of this kind of problem, some of the team members felt frustration and could not achieve good nursing.
Problems Holding to the Decision When a decision was made about palliative care, other problems emerged. Nurses and assistant nurses said that the physicians could revise the decision if the patient just blinked his or her eyes or if the next-of-kin begged for treatment. They could not understand this but had to go through this regardless of their own opinions. This revision created insecurity for all those involved with the patient. The nurses observed that grief transition work had started for the next-of-kin in which the nurses were highly involved. When a revision was made, the next-of-kin suddenly had to change from considering their family member as dying to recovering. This created hope again but decreased the credibility of the other team members who had tried to support the family in their sorrow. Physicians thought it was important to be flexible for a reviewing of the decision as it was easier to treat than not to treat, which was in accordance with their occupation. What can I sayVas a physician, you don’t need to treat, but often it feels more ethical to treat.
Assistant Nurses The nurses and assistant nurses sometimes believed that the decisions taken were not the best for the patient and that care became undignified. The team could divide itself into groups with separate beliefs on what was best for the patient. Allied professionals expressed that it was hard to watch when the patient not could end their life peacefully, whereas other continued with preventing physiotherapy. Nurses and assistant nurses claimed that it could be an act of benevolence to let someone die. However, nurses explained that, if the interventions were excessive and undignified for the patient, they could choose not to carry out the set intervention. The dying patient had his next of kin sitting with him; the physician wanted us to start measuring blood pressure, which immediately became alarming as the blood pressure decreased. The next of kin became worried and asked me what was wrong and what to do. In this case, I turned the monitor off and explained in a friendly way that it was an unnecessary thing to do. Then after a while, the next of kin became calm. It’s a nurse’s duty to make judgments and acts.
Nurses Another ethical dilemma was how to create acceptance within the team when the nutrition strategy was changed, often related to a percutaneous endoscopic gastrostomy implant. Nurses and assistant nurses claimed that this act just enabled the patient to move to another unit/accommodation no matter whether the patient was dying or not. Ethically, they had problems to hold on to such a decision and explained it with the clinics, wishing to achieve good survival rates.
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Mortality is somehow a measure of quality in the department, low mortality rate, the better care. It is good of course, but sometimes it feels like the life-sustaining measures are postponing decisions, and the patient dies after leaving the department after all.
Communication Barriers: The Underlying Problem There were several descriptions of barriers with communication leading to non-decision-making and problems holding to the decisions. The problem with nutrition issues was not discussed between different professionals although it had been an ongoing problem during the years. Physicians described the importance of the rehabilitation rounds. They claimed it was an opportunity for everyone in the team to be a part of the goal for the patient and share their experiences of the patient’s capacity. However, the assistant nurses did not always prioritize the rehabilitation rounds because of the high level of medical content. They felt insecure as they did not know the particular physician and as the physicians varied every week. Instead, information on the patients was delivered by the assistant nurses to a well-selected nurse, someone who they knew was thinking more like them. We can’t influence the physicians, they never have time to speak to us. And then it depends on which nurse you talk to. What we say, and so on. It’s so different depending on which nurse you talk to. Some of them want to do exactly what the doctors say, and some of them are with us, or how to express it (laugh).
Assistant Nurses Physicians and nurses mentioned that colleagues from other cultures did not have the same view of the meaning of palliative care. Instead, their experience was that foreign colleagues claimed that a physician’s primary duty was to keep the patient alive and that palliative care was an active help to die. Specialists who come from other countries have a difference in sight and perspective on this kind of matter. To get them to think like we do..., most of these physicians want to do everything they can, and some of them have problems understanding that you can discontinue the treatment.
Physician The decision and discussion to go from curative care to a palliative approach were much easier if the patient was comorbidity ill. If the patient were young, the decision became much harder to do. However, there were
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no common values about comorbidity or age, and there were no routines to hold on to. It was up to the present physician to decide on treatment. However, the lack of specialist physicians and their discontinuity around the patient were obvious, and nurses felt that this problem delayed the decision. We don’t have the same physicians; they are here maybe one week or two, then a new physician shows up and this new system begins. I think some of them think it’s unpleasant to make decisions about the palliative checklist. There is no one who takes the ultimate responsibility.
Nurses Every group expressed the problem that appeared if the family around the patient had a conflict; then, the decision problems and the communication problems were increased. Nurses felt that it was hard to know which one of the next-of-kin they should inform and which one of them could tell them honestly about the patient’s wishes. Physicians said that family conflicts and different opinions between team members could lead to problems for the whole unit. I cannot say they (family members) don’t disagree with each other, but they sometimes have various opinions and expectations for the patients’ recoveryIsometimes based on different experiences expressed by different members in the stroke team.
Physician According to some physicians, nurses, and assistant nurses, a ‘‘palliative checklist’’ (Appendix) describing the skills of palliative care and symptom management facilitated the communication and care of the dying patient. The purpose and goal became obvious, and all members of the team participated. A palliative checklist undoubtedly provided support for the communication and the decisions that had to be taken. It was considered easier to have something concrete to follow, which facilitated the organization around the patient. We have a checklist, and I think the benefits are great for the patients. We don’t ‘‘overtreat’’; we do what we can. You don’t begin the intravenous antibiotic treatment as a routine because the patient is on an internal medicine ward. You try to plan ahead and an acceptance develops.
Discussion The main theme of the current study was communication barriers, a consequence when absences of common
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value system appear and decision-making problems became a fact. Nondecisions and problems holding to the decision are the consequences of the communication barriers. Those categories create the ethical dilemmas that occur in the healthcare professional’s working day. All of the team was affected, some with frustration and a sense of futility; others felt that they tricked the next-ofkin. The absence of common goals gave rise to individually created strategies and solutions with the purpose to create good care. Nondecisions were often related to life-supporting treatments, where no mutual goals and the absence of communication tools became obvious. Communication failure is an extremely common cause of inadvertent harm for the patient (Leonard, Graham, & Bonacum, 2004). Team ambiguity may lead to different messages to patient and family members regarding the goal of the care. Some of the team members might be hopeful about the patients’ survival, whereas others evaluate the situation as hopeless. This contradiction was often related to nutrition and fluid. The allied professionals felt that absence of fluid and nutrition reduced the chances for recovery. A nutrition study on 104 stroke-injured patients showed that there was a higher stress reaction and increased frequency of bedsores and infections among the malnourished patients with stroke (Davalos et al., 1996). These facts could explain the feeling of frustration that the allied professionals felt when they valued their patients’ capacity and status simultaneously, knowing that the patient was malnourished. However, there were ethical disagreements among the respondents about carrying out a percutaneous endoscopic gastrostomy surgery on a dying patient. Several of the team members expressed that time was one of the problems that they had to deal with. The absence of time generated a need to prioritize among the patients on the unit and that prioritizing didn’t always benefit the dying patient with stroke. The time limitation was also a reason to the lack for discussion of deeper ethical dilemmas, daily experienced thoughts, and evaluations. In one study, a standardized, multiprofessional, evidence-based care plan was used in stroke units. The conclusion showed time efficient and increase in knowledge of the guidelines (Poder, Fogelberg-Dahm, & Wadensten, 2011). The essential problem about nondecisions could also be a consequence of the physician’s ethical code that describes a practice that respects the life, dignity, and liberty of the individual (College des Medecins du Quebec, 2002). The physician’s primary obligation is to act for the patients’ medical benefit (Beauchamp & Childress, 2009). This knowledge could explain the difficulties that appear when decisions should be made. This study shows the need of knowledge about palliative care for all team members; it also shows the physicians need of support for decision
making of end-of-life care in those stroke units. By common goals and respectful communication with each other, the palliative approach and skills enhance the teamwork (Stone et al., 2009). Another qualitative study in the United Kingdom highlights the palliative end-of-life care for patients with stroke not expected to recover from stroke. The results were similar with this study, uncertainty when initiating transition to palliative care, and issues were identified with the integration of acute stroke care and palliative care (Gardiner, Harrison, Ryan, & Jones, 2013). Another ethical dilemma that appeared was related to problems holding to the decision. If a decision was made about palliative care and ‘‘do not resuscitate,’’ it could be revised because of small changes in patients’ status, such as a blink of the eyes. When a care plan was designed with a focus on symptom control and quality of life, the nursing team started the process of transition for the next-of-kin with the goal of a dignified death for the patient. When the decision was revised and new tests and treatments started again, nurses and assistant nurses felt that it was difficult to explain the shift from care of a dying patient to acute care again to the next-of-kin. These new interventions created a sense of distrust from the next-of-kin, and the team around the dying patient with stroke felt embarrassed that they had started the transition process. Previous studies have showed that honesty and clarity of information were of great importance and that the next-of-kin were keen to see a peaceful, meaningful, and dignified death (Payne, 2009). Mutual trust is a way of handling ethical problems by administering care with the patients best interesting at heart (Rejno, Berg, & Danielson, 2012). Nurses and assistant nurses who did not share physicians’ decisions made their own judgments and decisions, which could be questioned. Communication, respect, and understanding within the team are essential when caring for dying patients. The decision-making problem was based on communication barriers. Some of the described ethical problems were also culture-based ethical problems. The physicians in the current study felt that some colleagues from other nations did not share their idea of palliative care. This was also seen in a study where ethnic differences regarding ‘‘do-not-resuscitate’’ orders became obvious (Zahuranec et al., 2009). Diversity of opinion is usually a good thing, but it should not be revealed to patients or family members. Recognizing when treatment is futile has important benefits as it curtails distressing interventions and therapy when there is no hope of recovery; it enables families to prepare for the death of the patient and facilitates the ethical principle of justice and the reallocation of resources to others (Ridley, 2002). Previous study shows that the use of standardized tools and behavior is an effective
Copyright © 2014 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
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strategy to enhance teamwork and reduce conflicts (Leonard et al., 2004). Liverpool care pathway and other kinds of palliative checklists might support the whole team in these issues (Appendix; Anderson, 2002). Usually, physicians consider the patient’s own wishes to be of importance when decisions are made (Rydvall, Bergenheim, & Lynoe, 2007). However, after a severe stroke, the patient’s status could reduce or inhibit the capacity to act autonomously, and that fact leaves the decision-making dilemma about palliative care to the physician. The decision making is affected by legal barriers, cultural values, and emotional barriers (Aita, Takahashi, Miyata, Kai, & Finucane, 2007). The results of this study show that healthcare professionals experience that the relationship in the family is essential; understanding the patient’s own wishes facilitated decision making of palliative care and reduced the emotional barriers for the physicians.
Limitations and Methodological Considerations Four interviewers with different styles of interviewing behavior and varying influences on the respondents were involved in the study. However, because of this, the effects of a single author’s preunderstanding could be reduced and thus increase credibility. The two authors (HE and MF) analyzed all the interviews. The physicians’ interviews were performed individually for reasons of convenience, and this turned out to be strength in the results. The physicians who had the main roles in the matter could honestly declare their experiences and feelings in confidence. Even if stroke care and treatment are based on a structured program (European agreement), it is necessary with further investigations to be able to transfer the results to other similar stroke units in other countries.
Conclusion and Implications There are several ethical questions in multiprofessional stroke care units, for example, regarding decision making about palliative care. Specialized stroke physicians need to learn palliative medicine to get the skills required to identify a dying patient with stroke and to make an end-of-life decision. A standardized tool and common strategies in the team facilitate communication and are necessary to create secure, trustful, and meaningful care. An individual palliative care plan for the dying patient with stroke that is designed in collaboration with the next-of-kin would probably increase the quality of care given. This care plan should be implemented in the team and be respected by all professionals involved. Exceptions from the plan should be discussed in the whole team and be taken under careful consideration. Continuity among the physicians who make
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primary decisions would probably prevent insecure rapid interventions. A mutual value system and communication tools might reduce the risk of communication barriers.
Acknowledgments We wish to thank the informants who openly shared their experiences and the head of the sections who made the informants available for the interviews. We also wish to thank Ella and Henry Sta˚hl’s foundation and the National Stroke Association who financially supported this project.
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APPENDIX. Checklist: End of Life Selected parts of the checklist with 17 sections from the Swedish National Guidelines: Palliative Care, 2012Y2014 (Freely translated by Helene Eriksson) 1. The physician makes a medical judgment of the patient’s condition and makes the decision of palliative care. 2. The physician conducts an informative break point dialog with the patient and his or her next-of-kin. The dialog and the break point judgment are documented in the medical record. 3. The physician stops all of the medical treatments, including intravenous and tube feeding which do not have any symptomatic benefit for the patients in this part of life. 4. The physician prescribes ‘‘when needed’’ medical treatment against wheezing, breathlessness confusion, nausea, pain, and anxiety. 5. The physician formulates a treatment strategy, for example, no CPR and how to manage further examinations and tests (if any should be performed). This strategy is communicated with the healthcare professionals and the next-of-kin. 6. (8) The team stops nursing actions that do not benefit the patient in this part of life, for example, temperature, pulse, and blood pressure measurements. (http://www.cancercentrum.se/PageFiles/3493/NatVP_Palliativv%C3%A5rd2012_kortversion.pdf)
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