Advertisement

Pain Relief at the End of Life: Nurses’ Experiences Regarding End-of-Life Pain Relief in Patients with Dementia

Published:March 04, 2013DOI:https://doi.org/10.1016/j.pmn.2012.10.005

      Abstract

      Patients with dementia receive suboptimal palliative care, and this patient group is at risk to have pain at the end of life. Because communicative impairments are common in this patient group, nurses play an important caregiver role in identifying, assessing, and relieving patients’ pain. This study aimed to describe nurses’ experiences regarding end-of-life pain relief in patients with dementia. This descriptive exploratory qualitative study was based on seven semistructured interviews. Burnard’s content analysis inspired the data analysis. Two main categories were identified: (1) nurses’ experience of difficulties concerning pain relief and (2) nurses’ experience of resources concerning pain relief. Nurses experienced difficulties, such as feeling of powerlessness because of difficulties in obtaining adequate prescriptions for analgesics, ethical dilemmas, feeling of inadequacy because analgesia did not have the desired effect, and a feeling of not being able to connect with the patient. Factors, including knowledge about the patient, professional experience, utilization of pain assessment tools, interpersonal relationships, and interprofessional cooperation, served as resources and enabled end-of-life pain relief. The results of this study highlight the complexity of pain relief in patients with dementia at the end of life from a nursing perspective. The inability of patients with dementia to verbally communicate their pain makes them a vulnerable patient group, dependent on their caregivers. Knowing the life story of the patient, professional experience, teamwork based on good communication, and use of a pain assessment tool were reported by the nurses to improve pain relief at the end of life for patients with dementia.
      Dementia is a progressive, incurable condition involving complex needs (
      • Harris D.
      Forget me not: Palliative care for people with dementia.
      ). Impairment of mental functioning, for example, memory loss, disorientation, language impairment, personality change, and difficulties in carrying out activities of daily life characterize the condition (
      National Institute for Health and Clinical Excellence
      Dementia: Supporting people with dementia and their careers in health and social care. NICE clinical guideline 42. (pp. 4-5).
      ). Dementia causes limitations in life (
      • Harris D.
      Forget me not: Palliative care for people with dementia.
      ) and should be recognized as a terminal condition (
      • Mitchell S.L.
      • Teno J.M.
      • Kiely D.K.
      • Shaffer M.L.
      • Jones R.N.
      • Prigerson H.G.
      • Volicer L.
      • Givens J.L.
      • Hamel M.B.
      The clinical course of advanced dementia.
      ). The incidence of dementia increases with age. About 1% of people aged 65 years suffer from dementia compared to 50% of people aged 90 years (

      SBU, Statens Beredning för medicinsk Utvärdering (in Swedish). Swedish Council on Health Technology Assessment (2007). Vård av personer med demenssjukdom – vad vet vi idag? (pp. 36-37). Falköping:Elanders.

      ). The estimated number of people living with dementia worldwide today is 24 million. Moreover, the number of people with dementia is estimated to double over the next 20 years without effective prevention or treatment strategies (
      • Ferri C.P.
      • Prince M.
      • Brayne C.
      • Brodaty H.
      • Fratiglioni L.
      • Ganguli M.
      • Hall K.
      • Hasegawa K.
      • Hendrie H.
      • Huang Y.
      • Jorm A.
      • Mathers C.
      • Menezes P.R.
      • Rimmer E.
      • Scazufca M.
      Global prevalence of dementia: A Delphi consensus study.
      ).
      Irrespective of a patient’s level of cognition, studies conclude that healthcare workers often tend to underestimate patients’ experience of pain. It is firmly established that people with dementia receive less analgesia compared to people who are cognitively intact, even if they suffer from the same medical condition (
      • Morrison S.R.
      • Siu A.L.
      A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture.
      ).
      Although pain relief is one of the main elements in end-of-life care (
      The National Board of Health and Welfare in Sweden
      Smärtlindring i livets slutskede.
      ), studies indicate that patients with dementia are liable to have pain at the end of life (
      • McCarthy M.
      • Addington-Hall J.
      • Altmann D.
      The experience of dying with dementia: A retrospective study.
      ;
      • Shega J.W.
      • Hougham G.W.
      • Stocking C.B.
      • Cox-Hayley D.
      • Sachs G.A.
      Patients dying with dementia: Experience at the end of life and impact of hospice care.
      ). Physicians prescribe less palliative medication for this vulnerable patient group than for cognitively intact patients (
      • Afzal N.
      • Buhagiar K.
      • Flood J.
      • Cosgrace M.
      Quality of end-of-life care for dementia patients during acute hospital admission: A retrospective study in Ireland.
      ), and many studies conclude that patients with dementia receive suboptimal palliative care (
      • Afzal N.
      • Buhagiar K.
      • Flood J.
      • Cosgrace M.
      Quality of end-of-life care for dementia patients during acute hospital admission: A retrospective study in Ireland.
      ;
      • Mitchell S.L.
      • Kiely D.K.
      • Hamel M.B.
      Dying with advanced dementia in the nursing home.
      ;
      • Mitchell S.L.
      • Morris J.N.
      • Park S.P.
      • Fries B.E.
      Terminal care for persons with advanced dementia in the nursing home and home care settings.
      ).
      Because patients with dementia often find it difficult to express themselves verbally, the nurse plays an important caregiver role in identifying, assessing, and relieving pain in these patients (
      • Lane P.
      • Kuntupis M.
      • MacDonald S.
      • McCarthy P.
      • Panke J.A.
      • Warden V.
      • Volicer L.
      A pain assessment tool for people with advanced Alzheimer’s and other progressive dementias.
      ). Advocacy on behalf of the patient with dementia is also an important role for the nurse. Few studies have specifically examined the experiences of nurses in this context. Hence, this study aimed to describe nurses’ experiences regarding end-of-life pain relief in patients with dementia.

      Methods

      This study was conducted on behalf of a hospital unit in southern Sweden where patients with dementia are enrolled. The unit specializes in neuropsychiatric disorders, for example, dementia. A descriptive, exploratory qualitative approach was used. Qualitative research is often used in health research for the general purpose of gaining an in-depth understanding of a lived experience (
      • Dew K.
      A health researcher’s guide to qualitative methodologies.
      ), which in this particular study concerns nurses’ experiences involving end-of-life pain relief in patients with dementia.

      Selection and Description of Participants

      Inclusion criteria were used to strategically select the persons who could best contribute to the informational needs of the study (
      • Polit D.F.
      • Beck C.T.
      Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
      ). Hence, for inclusion, the participant had to work at the particular unit, be a registered nurse (in other words, a professional caregiver), and have experience from situations involving end-of-life pain relief for patients with dementia. Seven nurses working day and night shifts in the unit met the inclusion criteria and gave their informed consent to participate. Two other nurses met the inclusion criteria but chose not to participate, stating that their workload on the unit was heavy, and they simply did not have time. The number of participants in qualitative studies is usually small, although they often contribute a substantial number of incidents and experiences that generate considerable data (
      • Polit D.F.
      • Beck C.T.
      Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
      ). All seven participants were women aged 26 to 52 years. One nurse had only 1 year of experience as a registered nurse, but the experience of the others varied from 6 to 25 years. The nurses’ experience in working specifically with people with dementia ranged from 1 to 23 years. Two of the nurses had specialist training, one in geriatric care and one in psychiatry. None of the interviewed nurses had formal training in palliative care or pain relief.

      Data Collection

      We used a semistructured interview technique with open-ended questions, which is a common method of data collection in qualitative research. The list of questions functions as a guide during the interview, but further questions can be posed to pursue a response from a participant (
      • Clissett P.
      Evaluating qualitative research.
      ). The interview guide (Appendix 1) for this study was developed by reviewing the literature and a thorough discussion with the supervising psychiatric nurse (third author). Before the interviewing started, a pilot interview was conducted to gain an understanding of how the questions might be perceived.
      • Polit D.F.
      • Beck C.T.
      Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
      emphasize the importance of preparing for the actual interviews. The pilot interview did not lead to any modifications of the interview guide. However, in the pilot interview, the nurse informant tended to answer more in general terms than in terms of her own experience. Hence, each interview started with the interviewer accentuating that the aim of the study was to describe the informant’s experiences. Thus, informants were encouraged to recall specific situations.
      The responses from the pilot interview were not included in the findings of this study. All interviews took place in a separate, private room at the unit where the nurses worked. All interviews were tape recorded and lasted approximately 30–40 minutes. Each interview commenced with the following question: “Can you tell us about how you relieved pain for a patient with dementia at the end of life?” Two researchers participated in each interview, but the main responsibility to conduct the interview alternated. The researcher who was not interviewing wrote memos in accordance with Burnard’s content analysis (
      • Burnard P.
      A method of analysing interview transcripts in qualitative research.
      ). Seven interviews were conducted, and the researchers found that similar experiences were reported as the interviewing proceeded. Data collection concluded at the end of 2009.

      Data Analysis

      Burnard’s content analysis inspired the data analysis (
      • Burnard P.
      A method of analysing interview transcripts in qualitative research.
      ;
      • Burnard P.
      Teaching the analysis of textual data: An experiential approach.
      ). This method is considered appropriate for semistructured, in-depth interviews with open-ended questions, the premise being that the interview has been tape-recorded and transcribed verbatim (
      • Burnard P.
      A method of analysing interview transcripts in qualitative research.
      ).
      The researchers each transcribed half of the recorded interviews. Then the taped recordings and transcripts were exchanged, and the other researcher followed the transcript carefully while listening to the taped recording. After making minor revisions, the researchers read all transcripts repeatedly to become immersed in the collected data and, while reading the transcripts, made notations on general themes. The researchers individually reflected on the data during the analytical process. Each researcher defined a list of categories that described all aspects of the content. The lists of categories were compared and discussed until the researchers concurred on an interpretation of the data. Categories that were similar were “collapsed” into broader categories. This process generated the final category list consisting of two main categories and four and five subcategories, respectively. Based on the final category list, the material was coded, copied, and pasted into a Word document under the appropriate main category and subcategory. The document was read to be certain that no further adjustments were needed. Relevant quotations were extracted to illustrate the context of each category and to show that the findings are grounded in the collected data (
      • Burnard P.
      A method of analysing interview transcripts in qualitative research.
      ) (Appendix 2).

      Rigor

      Credibility refers to the extent to which the findings of qualitative research represent the truth of the data. This study used investigator triangulation (
      • Polit D.F.
      • Beck C.T.
      Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
      ), which means that two researchers collected and analyzed the data. In addition, the interviews were tape recorded to reduce the risk of selective recall. Dependability refers to the data stability over time (
      • Polit D.F.
      • Beck C.T.
      Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
      ). In this study, the researchers reflected on the data individually during the data analysis process and then compared the individual conclusions. Confirmability refers to the objectivity of the data (
      • Polit D.F.
      • Beck C.T.
      Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
      ). The interviewers in this study aimed to achieve confirmability by trying to set their preconceived beliefs aside through discussions and by posing open-ended questions. Transferability refers to the extent to which the study findings are transferable to other settings and contexts. Thorough descriptions of participants and research setting are provided so readers can assess the applicability of the findings to other settings (
      • Polit D.F.
      • Beck C.T.
      Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
      ).

      Ethical Considerations

      The ethical committee of the health and society faculty at Malmö University gave the initial approval of the study (registration no. HS60-09/951:9). Final approval was conferred by the head of the unit on which the study was conducted.
      Participants gave their informed consent before the study. They received both written and oral information that participation was voluntary and that they could terminate their participation at any time without giving any further explanation. The information acquired from the interviews was treated confidentially and protected from unauthorized parties.

      Results

      The two main categories and their respective subcategories are presented below.

      Main Category 1: Nurses’ Experience of Difficulties Concerning Pain Relief

      All of the interviewed nurses agreed that all suffering should be alleviated to the extent possible. Nevertheless, the nurses at the unit experienced barriers and difficulties regarding pain relief in patients with dementia at the end of life. One nurse reported that pain relief was of such inferior quality that the unit where the patients with dementia received care was not a good place to die. “…/I want to believe, and I think that people generally want to believe, that you should not have to die with pain and anxiety in Sweden in 2009, but people are doing that here…”

      Subcategory: Feeling of Powerlessness

      Almost all of the nurses had, at one time or another, experienced difficulties in obtaining adequate prescriptions for analgesics; for instance, prescriptions arrive late, and patients may suffer from pain longer than necessary. Furthermore, some nurses experienced that physicians did not listen to them, and at times, they believed the prescribed doses were insufficient to adequately relieve the patient’s pain. “…you as a nurse have to beg and beg, and perhaps you are not even given a therapeutic dose to administer…”
      Some of the nurses believed that prescription failure could be explained by the physicians’ lack of time spent with patients at the unit. “They don’t see the patient as much as we do. I don’t know if that’s the reason. We become more frustrated when we see suffering all the time and feel like we must do something…”
      Most of the nurses believed their experience and knowledge were adequate to raise a discussion about pharmacological pain relief with the physician. However, some emphasized that inexperienced nurses might be too afraid to raise the issue; the nurses believed that this presents a risk to the patient, who tends to be undertreated. The nurses at the unit felt frustrated and powerless because of the absence of prescriptions, prescriptions arriving too late, or prescriptions of insufficient dosage. “…you feel sorry for the patients. And you get frustrated because you feel that you are not doing as much good for the patient as you would like to do…”
      End-of-life care and pain management were not the unit’s areas of expertise, and some nurses questioned why experts in these areas were not consulted. “…pain relief in all stages of life is difficult, but there is expertise to be had, and I don’t think one should be afraid of doing that if you can’t handle it on your own…”

      Subcategory: Ethical Dilemmas When Meeting the Individual

      The nurses described ethical dilemmas when caring for a patient with dementia at the end of life. Some of the situations involved physicians trying, at all cost, to keep the patient alive. For instance, they prescribed infusions, antibiotics, and blood transfusions instead of focusing on alleviating pain and anxiety. Most of the nurses believed that end-of-life care should focus on relieving pain instead of prolonging suffering. “…it’s not about quantity, but quality of life at the end of life…”
      Some nurses expressed a fear of giving a patient too much morphine, because it might hasten the patient’s death. They did not want the patient to suffer or to be in pain. On the other hand, nurses experienced anxiety at the thought of being responsible for a patient dying earlier than the patient might otherwise have died. One nurse even raised the question of whether this constituted assisted dying. However, the nurses believed that it is better to overtreat pain than to undertreat it at the end of life.

      Subcategory: Feeling of Inadequacy

      Nurses experienced that analgesia does not always have the desired effect on patients. One nurse described feeling a sense of inadequacy: “…you get the feeling of inadequacy…the peacefulness that you hope for doesn’t happen…”
      The nurses described the difficulty with patients with dementia being more prone to side effects from analgesia. The most common and pronounced side effects were increased confusion, constipation, and increased risk of falls.

      Subcategory: Feeling of Not Being Able to Connect with the Patient

      All of the nurses experienced difficulty connecting with patients with dementia. Nurses reported that communication often was an obstacle because the patient group generally has communication-related impairments and difficulties in expressing their pain verbally. Instead, they might express their pain through restlessness, screaming, aggressive behavior, and changes in facial expressions. Even if the nurses suspected that a patient had pain, they found it difficult to determine the nature of the pain. “The ability to express themselves, to tell if they are in pain, where they have pain… And in what way it hurts, and how much it hurts, they can’t express anything.”
      Three of seven nurses said that they asked relatives who knew the patient, because normally they could help interpret the patient’s pain signals. Some of the nurses found it difficult when a patient with dementia neared the end of life: “We don’t know what they want. We don’t even know if they are aware of the fact that they are dying.”

      Main Category 2: Nurses’ Experience of Resources Concerning Pain Relief

      Nurses believed the one of the main aims in caring for patients with dementia at the end of life is to relieve their pain. The nurses’ experience was that several resources or possibilities could enable adequate pain relief. “I believe that one of the most beautiful things you can do is to help someone die in a good way, and it’s one of the most important things you can do!”

      Subcategory: Ability to Understand the Needs of the Patient

      Most of the nurses experienced that they had the ability to observe and interpret the patients’ individual signals of pain. They believed that this ability was developed through experience. One nurse mentioned that she used the Doloplus 2 pain assessment tool to assess pain in patients. The nurses emphasized the importance of observing how the patients’ behavior changed over time, because changes in behavior can be a signal of pain. “…we’re quite observant if someone is moving differently, or is taking less initiative, even if it’s only about removing the blanket when getting up.”

      Subcategory: Interpersonal Relationships

      The nurses highlighted the advantage of knowing the patient’s life story. It facilitated discovering the uniqueness of the individual. Most of the nurses experienced that patients’ relatives were a resource for collecting information on what a particular patient had liked and still liked. The life story of the patient immersed the nurse in the patient’s situation and facilitated understanding and interpreting the patient’s signals. “…knowing the patients is so important, and to know a lot about them, it makes it a lot easier to understand and interpret their signals. Of course!”

      Subcategory: Cooperation Centering on the Individual

      Six of seven nurses mentioned that good interprofessional cooperation is important to achieve adequate pain relief in patients with dementia at the end of life. They reported that being perceptive to one another has great value. Physicians need to listen to nurses and trust their ability to assess the patient’s need for pain relief and take action accordingly. “…when the doctors really listen and trust me as a nurse, that this patient really has pain. I can assess the pain, and they listen to me, and the patient gets pain relief.”

      Subcategory: Feeling of Satisfaction to Relieve Suffering with Pharmacological Pain Relief Options

      According to the nurses, pharmacological pain relief options are needed to relieve pain at the end of life. The nurses described experiencing a sense of satisfaction when patients became peaceful and quiet and their facial expression became relaxed after pain medication was administered. Even though patients tended to sleep more and became more confused after a morphine injection, the nurses preferred when patients were calm and slept instead of when awake with pain and anxiety. The nurses experienced that the relatives often agreed with them. “…he got his pain relief and became calm, and they got some beautiful days together because they could still have some contact. Even if it meant only brief moments, because he slept a lot. But he was calm, and the relatives calmed down because of that, and his life ended with some dignity as well.” At times, the nurses experienced difficulty in determining if the patient expressed pain or anxiety, but they experienced that morphine alleviated both pain and anxiety.

      Subcategory: Feeling of Satisfaction to Relieve Suffering with Nonpharmacological Pain-Relief Options

      All of the nurses believed that nonpharmacological pain-relief options offered a good complement to pharmacological pain relief. In the experience of some of the nurses, pharmacological pain relief was more effective if the patient was relaxed. “…it has to be something that provides a pleasant experience, something that makes the other effect, the pharmacological effect, better.”
      According to the nurses, nonpharmacological pain-relief options that worked well include the nurse’s presence, touch (for example holding the patient’s hand or giving a massage), music, and heating pads. The nurses’ experience indicated that the patient’s sense of well-being increased and, even if the pain itself was not relieved, that some indirect relief was attained because the patient’s worries and anxiety decreased. “…nearness to the patient, and touch, and perhaps massage, and if you sit next to the patient this also alleviates pain and anxiety.”
      If the nurse knew the life story of a patient, it was easier for the nurse to successfully address the patient’s individual needs and desires. For instance, the nurse could play the music that a particular patient had always liked or offer the patient a taste experience (for example strawberry-flavored drink if that was something the patient had always liked). Moreover, the nurses believed that they played a key role in encouraging relatives to visit if they were important to the patient.

      Discussion

      Even if the informants in this study are few, each interview provides a rich source of information (
      • Polit D.F.
      • Beck C.T.
      Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
      ). Seven interviews were conducted. The researchers found that similar experiences emerged, and that no further relevant information in relation to the aim of the study was revealed. Hence, data saturation was achieved. Because this study has a qualitative approach, the results were necessarily influenced by the researchers’ experiences during the session. According to
      • Graneheim U.H.
      • Lundman B.
      Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness.
      , reality can be interpreted in different ways, and the result is the outcome of the researchers’ subjective interpretation.
      Some of the categories appear to be contradictory. For instance, the nurses experience cooperation between healthcare professionals as a resource when it worked well and as a barrier when it did not.
      This study increases our knowledge about how nurses describe their experiences concerning end-of-life pain relief in patients with dementia. Past studies have indicated that patients with dementia are receiving suboptimal palliative care (
      • Afzal N.
      • Buhagiar K.
      • Flood J.
      • Cosgrace M.
      Quality of end-of-life care for dementia patients during acute hospital admission: A retrospective study in Ireland.
      ;
      • Mitchell S.L.
      • Kiely D.K.
      • Hamel M.B.
      Dying with advanced dementia in the nursing home.
      ;
      • Mitchell S.L.
      • Morris J.N.
      • Park S.P.
      • Fries B.E.
      Terminal care for persons with advanced dementia in the nursing home and home care settings.
      ) and that this patient group tends to suffer from pain at the end-of-life (
      • McCarthy M.
      • Addington-Hall J.
      • Altmann D.
      The experience of dying with dementia: A retrospective study.
      ;
      • Shega J.W.
      • Hougham G.W.
      • Stocking C.B.
      • Cox-Hayley D.
      • Sachs G.A.
      Patients dying with dementia: Experience at the end of life and impact of hospice care.
      ). In conformity with earlier findings, the nurses in this study described that they experienced that the pain of patients with dementia at the end of life tended, at times, to be undertreated due to several barriers. The nurses experienced feelings of powerlessness and frustration because of prescription failures, for instance absence of prescriptions, prescriptions arriving too late, or prescriptions of insufficient dosage. An earlier study by
      • Neergaard M.A.
      • Olesen F.
      • Jensen A.B.
      • Sondergaard J.
      Palliative care for cancer patients in a primary health care setting: Bereaved relatives’ experience, a qualitative group interview study.
      reported similar findings. The nurses in their study experienced frustration due to deficient cooperation between physicians and nurses. The prescription failures that the nurses in this study experience might be explained by poor communication between professionals, which the previous study also mentioned as a major problem. Another study, by
      • Van Niekerk L.M.
      • Martin F.
      The impact of the nurse-physician relationship on barriers encountered by nurses during pain management.
      , which aimed to examine barriers that nurses encountered when attempting to provide optimal pain relief, found that the most common provider-related barriers included insufficient cooperation by physicians, inadequate prescription of analgesic medications, and physicians’ lack of knowledge and inappropriate perceptions of pain.
      • Larson E.
      The impact of physician-nurse interaction on patient care.
      accentuates that physician-nurse interactions are a direct patient care concern for two reasons; first, a conflict between professionals creates an unhealthy work environment, and second, the needs of the patient tend to be neglected.
      • Schmidt I.K.
      • Svarstad B.L.
      Nurse-physician communication and quality of drug use in Swedish nursing homes.
      report that multidisciplinary teams consisting of nursing staff, physicians, and pharmacists improve the quality of drug use. In their study, they focused on criteria addressing the selection of individual drugs and the presence of polymedicine. Their study found that the nursing homes where teams had been developed had a better quality of drug use, which indicates that team discussion is an efficient way to improve drug utilization (
      • Schmidt I.K.
      • Svarstad B.L.
      Nurse-physician communication and quality of drug use in Swedish nursing homes.
      ). Hence, it seems like cooperation, communication, and mutual respect among professionals are factors that enable and facilitate adequate pain relief.
      Some of the nurses in this study reflected on why pain relief in dementia patients at the end of life tends, at times, to be of inferior quality. They mentioned that pain relief and end-of-life care are not the unit’s areas of expertise and that experts are not consulted. Other studies also describe shortcomings in consulting experts about end-of-life care. A study on how relatives experience general practitioners’ (GP) care of terminally ill cancer patients shows that some relatives thought that the GP had insufficient knowledge and did not seek assistance from specialists in palliative care (
      • Neergaard M.A.
      • Olesen F.
      • Jensen A.B.
      • Sondergaard J.
      Palliative care for cancer patients in a primary health care setting: Bereaved relatives’ experience, a qualitative group interview study.
      ). When working in the healthcare sector, it is important to know one’s strengths, but also one’s limitations, and to consult experts when needed. Otherwise, the patient is the first to suffer. A study of
      • Afzal N.
      • Buhagiar K.
      • Flood J.
      • Cosgrace M.
      Quality of end-of-life care for dementia patients during acute hospital admission: A retrospective study in Ireland.
      addresses a potential inequality of end-of-life care for patients dying with dementia. When comparing to patients without dementia, the patients with dementia were less frequently referred to palliative care specialists.
      At times, ethical dilemmas arise when caring for patients with dementia at the end of life. Some of the ethical situations that the nurses experienced involved physicians trying, at all cost, to keep the patient alive. This might be explained by the fact that advanced dementia, in contrast to, for example, metastatic cancer, is not generally regarded as a terminal illness (
      • Mitchell S.L.
      • Teno J.M.
      • Kiely D.K.
      • Shaffer M.L.
      • Jones R.N.
      • Prigerson H.G.
      • Volicer L.
      • Givens J.L.
      • Hamel M.B.
      The clinical course of advanced dementia.
      ).
      • Mitchell S.L.
      • Teno J.M.
      • Kiely D.K.
      • Shaffer M.L.
      • Jones R.N.
      • Prigerson H.G.
      • Volicer L.
      • Givens J.L.
      • Hamel M.B.
      The clinical course of advanced dementia.
      concluded that dementia should be recognized as a terminal condition and that palliative care must be improved to reduce the likelihood that patients with advanced dementia at the end of life will undergo burdensome interventions that cause physical suffering.
      The nurses in this study experienced a feeling of not being able to connect with the patient. Communication is often an obstacle because patients with dementia generally have difficulties in expressing their pain verbally. Some of the nurses in this study talked about knowing the life story of the patient as a facilitator for understanding and interpreting the individual’s personal pain signals. This is in line with a previous study on pain assessment practices involving nursing home residents. The study by
      • Clark L.
      • Jones K.
      • Pennington K.
      Pain assessment practices with nursing home residents.
      reports that staffs describe that knowing the patient is central when it comes to identifying pain cues. The most common pain assessments used in nursing homes were relationship-based and based on staff members’ knowledge of the patients’ typical behavior patterns. The nurses in our study emphasized the importance of knowing the patient and observing changes in behavior, because it might be a signal of pain. To get to know the life story of a patient, nurses must build good relationships with the relatives and have time to spend with the patient.
      Clinicians and caregivers need to become advocates for cognitively impaired patients’ pain assessment, management, and relief (
      • Lane P.
      • Kuntupis M.
      • MacDonald S.
      • McCarthy P.
      • Panke J.A.
      • Warden V.
      • Volicer L.
      A pain assessment tool for people with advanced Alzheimer’s and other progressive dementias.
      ). Nearly all nurses in our study expressed difficulty in connecting with dementia patients, because these patients often lose the ability to communicate verbally. Nevertheless, most of the nurses believed they had enough experience to observe patients and interpret their individual signals of pain. One nurse out of seven reported using a pain assessment tool to assess pain in patients with dementia.
      • Lane P.
      • Kuntupis M.
      • MacDonald S.
      • McCarthy P.
      • Panke J.A.
      • Warden V.
      • Volicer L.
      A pain assessment tool for people with advanced Alzheimer’s and other progressive dementias.
      emphasize the importance of using a valid and reliable pain assessment tool instead of assessing pain subjectively. They assert that correctly assessed and treated pain is a factor that improves the quality of life for people with dementia. Furthermore,
      • Zwakhalen S.M.
      • Hemers J.P.
      • Berger M.P.
      Improving the clinical usefulness of a behavioural pain scale for older people with dementia.
      believe that objective pain assessment by means of a clinically useful scale has major implications for nursing practice and directly decreases the risk of undertreating pain.
      • Herr K.
      • Bjoro K.
      • Decker S.
      Tools for assessment of pain in nonverbal older adults with dementia: A state-of-the-science review.
      also assert the need for an efficient means of identifying and evaluating pain in patients with dementia. The findings of their review point to several assessment scales that have potential, but remain in the early stages of development. No standardized tool has yet been recommended for adoption in clinical practice. Nevertheless, until a standardized tool is developed, clinicians can use one of the existing tools that match their setting and population and evaluate it (
      • Herr K.
      • Bjoro K.
      • Decker S.
      Tools for assessment of pain in nonverbal older adults with dementia: A state-of-the-science review.
      ). Another study (
      • Zwakhalen S.M.
      • Hemers J.P.
      • Berger M.P.
      The psychometric quality and clinical usefulness of three pain assessment tools for elderly people with dementia.
      ) has evaluated three pain assessment tools, PAINAD, PACSLAC, and DOLOPLUS-2, for patients with dementia. Their findings provide evidence on the reliability and the validity of these three pain assessment tools.
      Quality in end-of-life care is individual and should be achieved through good communication and decision making that takes into account the preferences of patients and their relatives. A previous study indicates that freedom from pain is considered to be the most important factor in end-of-life care (
      • Steinhauser K.E.
      • Christakis N.A.
      • Clipp E.C.
      • McNeilly M.
      • McIntyre L.
      • Tulsky J.A.
      Factors considered important at the end of life by patients, family, physicians, and other care providers.
      ). The results of this study highlight the complexity of pain relief in patients with dementia at the end of life from a nursing perspective. Improvements towards adequate pain relief are required. Hence, further research is needed.

      Study Limitations

      Some limitations of the study need to be acknowledged. Although each interview started with the interviewer accentuating that the aim of the study was to describe the informant’s experiences, the informants sometimes tended to answer in more general terms, referring to what “they” did at the unit. At times, it helped when the interviewer encouraged them to recall a specific situation, but the informants could not always remember specific situations. This might have affected the depth of the results; however, the nurses had long clinical experience and the interviews provided a rich source of information.
      Because the research was conducted in a medium-sized city in southern Sweden and the small sample size consists of only seven nurses, all women, the findings of this study may not be transferable to other settings and contexts (for example other cities, male nurses, or nurses who are specialized in pain relief or palliative care), because the participants were not specifically trained for these particular areas. Furthermore, the informants might not be representative. Because they volunteered to participate in an interview, they might represent a group of nurses that are especially interested in and aware of this particular topic.

      Conclusion

      Despite its limitations, this study provides new knowledge by describing how nurses experience end-of-life pain relief in patients with dementia. The inability of patients with dementia to defend their rights makes them a vulnerable patient group, dependent on their caregivers. Hence, research such as the present study is extremely important. Nurses experienced both difficulties and resources associated with pain relief. The difficulties that they experienced and described are a feeling of powerlessness because of prescription failures, ethical dilemmas due to differences in physicians’ and nurses’ views of the patient, feeling of inadequacy because analgesia does not have the desired effect, and a feeling of not being able to connect with the patient due to communication problems. According to the nurses, the resources that can enable adequate pain relief in a patient with dementia at the end of life are the ability to understand the needs of the patient, which is obtained through professional experience, and knowledge about the patient’s individual needs. A pain assessment tool can also facilitate the assessment of the patient’s pain. Hence, it is highly relevant to develop a standardized tool that can be recommended for adoption in clinical practice. Furthermore, an interpersonal relationship—knowing the life story of the patient and having a good relationship with relatives—facilitates understanding of the patient. These factors also make it easier to successfully address the patient’s individual needs and desires with nonpharmacological pain-relief options, which most of the nurses believed complement pharmacological pain relief. To achieve adequate pain relief, good interprofessional cooperation and teamwork based on communication and mutual respect is crucial.

      Appendix 1. Interview Guide

      Demographic data: Age, number of years of experience as a nurse, number of years of experience working with patients with dementia, supplementary training, specialist training, extra courses etc.
      • -
        Can you tell us about how you relieved pain for a patient with dementia at the end of life?
      • -
        Can you tell us about what difficulties you have experienced concerning end-of-life pain relief for patients with dementia?
      • -
        Can you tell us about a positive experience you have from end-of-life pain relief for patients with dementia?
      • -
        Can you tell us about a negative experience you have from end-of-life pain relief for patients with dementia?
      • -
        Can you tell us about your experience concerning nonpharmacological pain relief options?
      • -
        Can you tell us about your experience concerning pharmacological pain relief options?

      Appendix 2

      Tabled 1
      Meaning UnitCondensed Meaning UnitInterpretation of the Underlying meaningSubcategoryMain Category
      “/…/ and I think that sometimes it is too sad, that you as a nurse have to beg and beg and then perhaps you are not even given a therapeutic dose to administer.”The nurse has to beg and beg, and then she is not even given a therapeutic dose to administer.The nurse feels powerless and gets frustrated when she has to beg and beg, and her experience is that the prescribed doses, at times, are insufficient to adequately relieve the patient’s pain.Feeling of powerlessnessNurses’ experience of difficulties concerning pain relief

      References

        • Afzal N.
        • Buhagiar K.
        • Flood J.
        • Cosgrace M.
        Quality of end-of-life care for dementia patients during acute hospital admission: A retrospective study in Ireland.
        General Hospital Psychiatry. 2010; 32: 141-146
        • Burnard P.
        A method of analysing interview transcripts in qualitative research.
        Nurse Education Today. 1991; 11: 461-466
        • Burnard P.
        Teaching the analysis of textual data: An experiential approach.
        Nurse Education Today. 1996; 16: 278-281
        • Clark L.
        • Jones K.
        • Pennington K.
        Pain assessment practices with nursing home residents.
        Western Journal of Nursing Research. 2004; 26: 733-750
        • Clissett P.
        Evaluating qualitative research.
        Journal of Orthopaedic Nursing. 2008; 12: 99-105
        • Dew K.
        A health researcher’s guide to qualitative methodologies.
        Australian and New Zealand Journal of Public Health. 2007; 31: 433-437
        • Ferri C.P.
        • Prince M.
        • Brayne C.
        • Brodaty H.
        • Fratiglioni L.
        • Ganguli M.
        • Hall K.
        • Hasegawa K.
        • Hendrie H.
        • Huang Y.
        • Jorm A.
        • Mathers C.
        • Menezes P.R.
        • Rimmer E.
        • Scazufca M.
        Global prevalence of dementia: A Delphi consensus study.
        The Lancet. 2005; 366: 2112-2117
        • Graneheim U.H.
        • Lundman B.
        Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness.
        Nurse Education Today. 2004; 24: 105-112
        • Harris D.
        Forget me not: Palliative care for people with dementia.
        Journal of Postgraduate Medicine. 2007; 83: 362-366
        • Herr K.
        • Bjoro K.
        • Decker S.
        Tools for assessment of pain in nonverbal older adults with dementia: A state-of-the-science review.
        Journal of Pain and Symptom Management. 2006; 31: 170-192
        • Lane P.
        • Kuntupis M.
        • MacDonald S.
        • McCarthy P.
        • Panke J.A.
        • Warden V.
        • Volicer L.
        A pain assessment tool for people with advanced Alzheimer’s and other progressive dementias.
        Home Healthcare Nurse. 2003; 21: 32-37
        • Larson E.
        The impact of physician-nurse interaction on patient care.
        Holistic Nursing Practice. 1999; 13: 38-46
        • McCarthy M.
        • Addington-Hall J.
        • Altmann D.
        The experience of dying with dementia: A retrospective study.
        International Journal Geriatric Psychiatry. 1997; 12: 404-409
        • Mitchell S.L.
        • Kiely D.K.
        • Hamel M.B.
        Dying with advanced dementia in the nursing home.
        Archives of Internal Medicine. 2004; 164: 321-326
        • Mitchell S.L.
        • Morris J.N.
        • Park S.P.
        • Fries B.E.
        Terminal care for persons with advanced dementia in the nursing home and home care settings.
        Journal of Palliative Medicine. 2004; 7: 808-816
        • Mitchell S.L.
        • Teno J.M.
        • Kiely D.K.
        • Shaffer M.L.
        • Jones R.N.
        • Prigerson H.G.
        • Volicer L.
        • Givens J.L.
        • Hamel M.B.
        The clinical course of advanced dementia.
        The New England Journal of Medicine. 2009; 361: 1529-1538
        • Morrison S.R.
        • Siu A.L.
        A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture.
        Journal of Pain and Symptom Management. 2000; 19: 240-248
        • National Institute for Health and Clinical Excellence
        Dementia: Supporting people with dementia and their careers in health and social care. NICE clinical guideline 42. (pp. 4-5).
        NICE, London2006, amended 2011
        • Neergaard M.A.
        • Olesen F.
        • Jensen A.B.
        • Sondergaard J.
        Palliative care for cancer patients in a primary health care setting: Bereaved relatives’ experience, a qualitative group interview study.
        BMC Palliative Care. 2008; 7: 1
        • Polit D.F.
        • Beck C.T.
        Essentials of nursing research, methods, appraisal, and utilization. (pp. 269-336).
        Lippincott Williams and Wilkins, Philadelphia2006
      1. SBU, Statens Beredning för medicinsk Utvärdering (in Swedish). Swedish Council on Health Technology Assessment (2007). Vård av personer med demenssjukdom – vad vet vi idag? (pp. 36-37). Falköping:Elanders.

        • Schmidt I.K.
        • Svarstad B.L.
        Nurse-physician communication and quality of drug use in Swedish nursing homes.
        Social Science and Medicine. 2002; 54: 1767-1777
        • Shega J.W.
        • Hougham G.W.
        • Stocking C.B.
        • Cox-Hayley D.
        • Sachs G.A.
        Patients dying with dementia: Experience at the end of life and impact of hospice care.
        Journal of Pain and Symptom Management. 2008; 35: 499-507
        • Steinhauser K.E.
        • Christakis N.A.
        • Clipp E.C.
        • McNeilly M.
        • McIntyre L.
        • Tulsky J.A.
        Factors considered important at the end of life by patients, family, physicians, and other care providers.
        JAMA. 2000; 284: 2476-2482
        • The National Board of Health and Welfare in Sweden
        Smärtlindring i livets slutskede.
        (in Swedish) (pp. 3-10) Linköpings tryckeri AB, Linköping2001
        • Van Niekerk L.M.
        • Martin F.
        The impact of the nurse-physician relationship on barriers encountered by nurses during pain management.
        Pain Management Nursing. 2003; 4: 3-10
        • Zwakhalen S.M.
        • Hemers J.P.
        • Berger M.P.
        The psychometric quality and clinical usefulness of three pain assessment tools for elderly people with dementia.
        Pain. 2006; 126: 210-220
        • Zwakhalen S.M.
        • Hemers J.P.
        • Berger M.P.
        Improving the clinical usefulness of a behavioural pain scale for older people with dementia.
        Journal of Advanced Nursing. 2007; 58: 493-502