Original Article

Improving End-of-Life Care in Hospitals: A Qualitative Analysis of Bereaved Families’ Experiences and Suggestions

American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(1) 44-51 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113512718 ajhpm.sagepub.com

Sonja Bussmann, Dipl-Psych1, Pia Muders, Dipl-Psych1, Corinna Aruna Zahrt-Omar, Dipl-Pa¨d1, Pinzon Luis Carlos Escobar, Dr rer soc2, Matthias Claus, MSc2, Jan Schildmann, MD, MA3, and Martin Weber, Prof Dr med1

Abstract Objectives: To explore and document the experiences and expectancies of bereaved family members concerning the end-of-life (EOL) care of their deceased relative in a general hospital setting. Methods: Cross-sectional study using a questionnaire that included open-ended questions. Free-text answers were evaluated with qualitative content analysis. A total of 270 family members provided information about improvements in inpatient care. Results: Families described structural deficiencies. Furthermore, they requested a more holistic patient health care beyond medical treatment and expressed the wish for more professional support for families. Discussion: The view of bereaved families confirmed the need for improvement in general hospital EOL care. The results underline the importance of a more holistic EOL care. The application of communication skills training, structured family meetings, and integrated pathways is recommended. Keywords end of life, palliative care, general hospital, quality of care, bereaved family, qualitative research

Introduction According to official statistics, in 2008, 47.5% of all deaths in Germany occurred in hospitals.1,2 Despite this high number, there is only little research about the end-of-life (EOL) care in the general hospital setting in Germany. Becker et al investigated the patterns of medical and nursing practice concerning care of dying patients in a German acute care hospital without palliative care service.3 Their results assume a problematic transition from acute to palliative care; the hospital setting often being focused on life-prolonging and life-supporting activities while life-sustaining treatment and palliative care are misunderstood as ‘‘giving up.’’ The study of Aiken et al4 investigated the quality of hospital care in a cross-sectional survey of nurses and patients in 12 European countries and the United States. Germany ranked worst among these. Studies in other European countries have shown that EOL care in general hospital settings is quite often of poor quality that leads to increased dissatisfaction among patients.5-7 One of the key factors researchers see as contributing to poor care is a lack of open communication and especially a lack of information regarding the condition and prognosis of the person who died.5,7 Further aspects of deficient care concern the emotional and psychosocial needs of patients that are not met or included in the terminal care in general hospitals. Even the

basic nursing care and physical symptom control is not always satisfying.5,6 These circumstances represent additional distress for the patients and their families. On the other hand, the inpatient hospitalization might be unpreventable in the case of a serious condition. In this care setting, it is important to know their special needs and to document the experiences and expectancies of patients and their families to guarantee an optimal care for this group of patients.8 Since family members are closely involved in the care of their loved ones and have gained insight in daily

1

Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Mainz, Germany 2 Institute of Occupational, Social and Environmental Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Mainz, Germany 3 Institute for Medical Ethics and History of Medicine, NRW-Junior Research Group ‘‘Medical Ethics at the End of Life: Norm and Empiricism’’, RuhrUniversity Bochum, Bochum, Germany Corresponding Author: Martin Weber, University Medical Center of the Johannes Gutenberg University of Mainz, Mainz, Germany. Email: [email protected]

Downloaded from ajh.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 22, 2015

Bussmann et al

45

hospital routine, they are able to give substantial information that could help to improve EOL care in general hospital.9 In 2008, the Establishment of Hospice and Palliative Care Services (EPACS) study was carried out in RhinelandPalatinate, Germany, to document the quality of out- and inpatient palliative care. The study focused primarily on unfulfilled needs and wishes of patients and their families as well as gaps in the provision of palliative care. The data have already been analyzed with quantitative methods to answer different questions.2,9-12 The present study focuses on qualitative analysis. Many studies concerning patients’ and families’ satisfaction and improvements in the provision of care have shown that qualitative measures worked out advantageously for this purpose.13-16 The aim of our study was to analyze family members’ suggestions for improvement in general hospital EOL care.

Methods Study Design and Questionnaire Starting point for the qualitative analysis were free-text answers to the questionnaire of the EPACS study. This comprehensive cross-sectional survey was carried out in the federal state of Rhineland-Palatinate, Germany, between September 2008 and January 2009 to gain a representative picture of inpatient and outpatient palliative care. The questionnaire was sent to family members of deceased citizens who were drawn randomly (for more details about questionnaire and sampling, see Escobar Pinzon et al11). The study was approved by the ethical committee of the Medical Association of RhinelandPalatinate. In total, 1378 questionnaires were completed by the respondents. In line with our research question, we considered only answers that related to the care in general hospital, that is, in a general hospital ward or an intensive care unit. For this purpose, a sample was drawn according to the place of care of the deceased person in the last 4 weeks before death. Thus, 633 persons had been cared for in a general hospital. For the qualitative analysis, 1 open-ended question was chosen, which referred to patients’ and families’ needs and requirements with regard to the care of terminally ill persons. More specifically, the respondents were asked to answer the question ‘‘Maybe you have suggestions on how to improve the care of terminally ill patients.’’ Of these patients, 270 family members (51.9% women and 48.1% men) made suggestions with regard to improvement in hospital care.

Analysis In the following analytical process (based on Philip Mayring’s approach to the Qualitative Content Analysis17), 5 authors (SB, PM, CZO, JS, and MW) participated in the development of a qualitative category system. The combination of the researchers’ expertise in palliative medicine, medical ethics,

psychology, social, and educational sciences provided the basis for a multidisciplinary and intersubjective understanding of bereaved family members’ answers and enhanced the validity of the results. In a first step, the original quotations of the respondents were prepared for coding, which means irrelevant details (with regard to our research question) were dropped and quotations containing more than a single improvement suggestion were divided into more paragraphs. The coding proceeded typically in several sequences: 3 authors (SB, PM, and CZO) independently coded a set of paragraphs. The coding procedure was inductive, that is to say, codes were developed and formulated as closely as possible to the material. They were discussed by 5 authors participating in the analytical procedure, and a consensus decision was made. Then another set of paragraphs was coded. When all quotations had been coded, the authors structured the codes by sorting them thematically and by establishing main and subcategories. The main categories represented the central themes of the family members’ responses, whereas the subcategories collected rather similar experiences or needs. Although the question answered by families was related to possible improvement suggestions, many responses gave examples of negative experiences. With regard to our research question, these were seen as too important to be excluded from the data. It was decided to generate 2 systems of categories, focusing either on improvement suggestions or on deficiencies of hospital EOL care. This process resulted in 2 systems of categories that consisted of 285 codes relating to families improvement suggestions and 40 codes about negative experiences with hospital EOL care. Although this study has a qualitative approach, we quantified the codes per subcategory and main category. Compared to other qualitative studies, our data are relatively large. Quantifying codes helped structuring it and obtaining an overview of our qualitative data. Frequency counts also allowed the researchers to identify recurrent themes.18 Frequency counts do not indicate the importance or the impact of respondents’ answers but indicate how general an opinion may be.19

Results The qualitative analysis of the bereaved families’ free-text answers generated 7 main categories concerning both improvement suggestions and reported deficiencies. To illustrate main and subcategories, a representative quotation was chosen for each subcategory (see Table 1 for category system of suggestions for improvements). The categories and quotations will be explained in detail subsequently.

Main category ‘‘Medical Care and Nursing’’ Many answers were assigned to the main category ‘‘Medical Care and Nursing.’’ This category focuses on different aspects regarding quality of care provided by physicians and nurses.

Downloaded from ajh.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 22, 2015

46

Downloaded from ajh.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 22, 2015

Single or 2 bedrooms Organizational issues

Understandable, open communication toward patients and families Responding to verbal complaints Structural aspects in hospital management Inspection of hospital wards

Psychological and spiritual welfare Extending support through spiritual adviser More psychological support for patients and families Consultation, information, and communication Better information and consultation

Possibility for families to stay overnight in hospital Timely communication to the family about terminal phase

Assistance for families after bereavement

Support for families More attention for families Better consultation for families

Emotional support after poor diagnosis

Commitment of personnel

Empathy for patients from personnel

No isolation of patients Humane dealing with persons who died Interpersonal humane interaction Humane care

Family presence during death Attention for dying patients Legalization of euthanasia

Medical care and nursing More time for patients and families Better care for patients Improving the provision with qualified personnel Improved pain treatment Improved availability of physicians and nursing staff No redundant and pain-causing therapies for terminally ill patients Care before and during dying Enabling to die in dignity Acceptance of patient advance directives and wishes of patients

Main category/subcategory

The wards should be checked by ‘‘other’’ physicians. Patient surveys by other physicians should certainly be helpful (V1887). One should not put up critically ill persons in three- or four-bed rooms without shower and WC. (V3174). No waiting periods on hospital floors lasting for hours until physical breakdown . . . (V1530.1).

One should take patients seriously as well as their families . . . not ignoring verbal complaints (V170.1/2/5).

More assistance concerning questions about care, [and] the options one has. Quicker aid, less bureaucracy; you need confirmations and forms for everything! (V815). . . . Physicians beat around the bush instead of talking in plain language. What a pity (V3047.3).

To talk to patients about dying and to stand by them, strengthening their faith (V492). More psychological support for the ill as well as the families (V1021).

More time and empathy also towards families . . . (V34.1/2). The treating physician should take time for the family member to advise him objectively and openly, not lecturing him, not raising false hopes, not dropping veiled hints for fear of consequences (V1035). . . . A beloved person has gone from this world and often leaves so much pain and consternation; there is need for assistance and attention [for the bereaved family members] (V34). The possibility to sleep in the hospital, so that the (dying) relative is not alone . . . (V2970.1). . . . The hospital did not inform me so I could not say good bye to my father. When I arrived, he was already given artificial respiration and he was unconscious. This has been and is still very sad for me (V2126).

. . . No diagnosis like ‘‘You have metastases in the brain, there is nothing that can be done about that’’ and then leaving the patient without any help (V1530.3).

. . . [That] they don’t become a ‘‘number’’ but stay a human being and person. [That they are] treated humanely and not used as a guinea pig (V4394). First and foremost employment of capable nursing staff characterized by the qualities: helpful, empathic, affectionate, appreciative, comforting. For us all this has been a great dream (V4653). Skilled personnel should take time and an interest in the care. They did noticeably have plenty of time for breaks (V495).

. . . to let a dying person leave in dignity and with respect (V2971.2). . . . Physicians: should comply with existing patient advance directive and not prolong the suffering and dying for a few months (V3518.2). . . . Family members should be informed ‘‘early enough’’ to support him . . . . (V537.3). Committed personnel with a natural attitude towards death. (V4383) Critically ill patients should get the legal option to end their lives painlessly and without complications if they wish . . . (V310.1). One should not isolate a dying person and shift her off . . . (V3175). To still treat the deceased with dignity . . . (V3775.1).

That they have more time to fulfil the requirements of their job . . . (V3653.1). One should have consideration for the wishes of patients. (V2959.3) Additional staff for taking care of the patients would be most important (V4163). Critically ill people should be free of pain in the terminal phase (V4458). The availability of physicians and nursing staff at night and at weekends . . . (V2214.1/2). . . . A terminally ill patient should not serve as welcome source of income for useless therapies (V1857.3).

Quotation Example

Table 1. Improvement Suggestions by Bereaved Families Concerning Care of Terminally Ill Patients in General Hospital.

4 7

1 13 2

4

13 11 2 22 17

1 3

5

36 18 9

1

4

12

3 2 30 13

7 6 5

45 15 7

126 43 43 27 5 4 4

No. of quotations per category

Bussmann et al

47

Important themes here were the personnel as well as the time resources of the hospital units and the quality of care. Many respondents saw a particular need for extension of the temporal capacity of nursing staff. Others were concerned about the shortage of personnel: Allowing more time for nursing staff and hospital nurses so that they can care for the patients wholeheartedly. (V1851) Additional staff for taking care of the patients would be most important. (V4163)

Further quotations within this main category relate to the qualification of professionals, their availability, and their coordination with each other. An improved pain treatment for critically ill patients also seemed to be an important concern to the respondents: Critically ill people should be free of pain in the terminal phase. (V4458) ( . . . ) A terminally ill patient should not serve as welcome source of income for useless therapies. (V1857.3)

The bereaved families described numerous deficiencies that were associated with medical care and nursing. Some reported negative experiences caused by staff shortage or by their tight schedule: The unavailability of physicians in the evening, at night and at weekends was scandalous. Sometimes you had to wait for a physician even in acute situations for 5, 10, 20 hours! (D3968) We spent twelve hours a day with my father in hospital and during that time period the nursing staff only came on request ( . . . ). (D702.1)

One family member criticized the high priority given to documentation and bureaucracy on hospital wards: . . . with a lack of personnel, documentation has high priority instead of treatment or care of the patient ( . . . ). (D4174.2)

Main Category ‘‘Care Before and During Dying’’ Answers in this category relate to the process of dying, to the care of dying patients, or to circumstances of dying in a general hospital. Physicians’ handling of patient’s advance directives is an important issue: ( . . . ) Physicians: should comply with existing patient advance directive and not prolong the suffering and dying for a few months. (V3518.2) My mother had made a decision against a nourishing probe in advance but everyone (paramedical and nursing staff, some physicians) made me a bad conscience: ‘Do you want to let your mother starve?’ (D1822)

It was important for many bereaved that their relatives might die without pain and without life-prolonging interventions. Some respondents argued in favor of the legalization of euthanasia: Critically ill patients should get the legal option to end their lives painlessly and without complications if they wish ( . . . ). (V310.1)

Some of the respondents asked for more privacy and better circumstances for their final farewell to the dying person. They would have liked to support the dying without facing any obstacles. ( . . . ) Family members should be informed ‘early enough’ to support him ( . . . ). (V537.3) Visiting hours for the families of dying patients should not be restricted. (V849) ( . . . ) Dying in a separate room with the possibility of a personal farewell – that would have been important for me. (V1456.4)

Furthermore, an improvement in individual care and personal contact to dying patients was requested: ( . . . ) during the last hours a dying person should get all the attention. (V537.2) Better training for the caregivers attending the dying during the last hours. (V3742)

Some respondents requested an improvement in dealing with the person who died. To still treat the deceased with dignity ( . . . ). (V3775.1)

Main Category ‘‘Interpersonal Humane Interaction’’ Many quotations in this category relate to physicians’ and nurses’ qualities such as kindness, empathy, and humanity. The following quotations reflect the need for improvement with regard to social competencies: Better humane care – affectionate care of patients!!! (V3592) First and foremost employment of capable nursing staff characterized by the qualities: helpful, empathic, affectionate, appreciative, comforting. For us all this has been a great dream. (V4653)

Another respondent demanded better support of patients after being told a poor diagnosis: ( . . . ) No diagnosis like ‘You have metastases in the brain, there is nothing that can be done about that’ and then leaving the patient without any help. (V1530.3)

In addition, an important issue for the bereaved was that patients be treated as persons rather than ‘‘numbers’’:

Downloaded from ajh.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 22, 2015

American Journal of Hospice & Palliative Medicine® 32(1)

48 . . . [That] they don’t become a ‘number’ but stay a human being and person. [That they are] treated humanely and [are] not used as a guinea pig. (V4394.2/3)

In the same context are several comments regarding deficiencies that denote a lack of holistic care: . . . The patient becomes a case! (D2328.3) The specification of professions involves that everyone treats only one aspect. Man as a whole is falling by the wayside ( . . . ). (D4504.1)

Main Category ‘‘Support for Families’’

( . . . ) the mentally and emotionally part of a dying person receive too little support ( . . . ). (D3080.2)

The respondents would have particularly liked to have the possibility to talk about death. Also, the patient was supposed to be strengthened in his faith. To talk to patients about dying and to stand by them, strengthening their faith. (V492)

Main Category ‘‘Consultation, Information, and Communication’’

The bereaved families have not only made suggestions for improvement concerning care of critically ill patients. Personally, they would have liked to be better cared for by physicians and nurses:

In the opinion of many respondents, communication structures in the general hospital setting needed to be improved. They would have liked more information and help on a lowthreshold level. Bureaucratic procedures were also considered as obstacles for a good hospital care:

The treating physician should take time for the family member to advise him objectively and openly, not lecturing him, not raising false hopes, not dropping veiled hints for fear of consequences. (V1035)

More assistance concerning questions about care, [and] the options one has. Quicker aid, less bureaucracy; you need certifications and forms for everything! (V815)

More sympathy of hospital staff and physicians, which know what families have to expect. (V3636)

Communication particularly between physicians, patients, and families should be more frank and comprehensible.

Some respondents felt alone with their ‘‘pain and consternation’’ (V34.3) caused by the impending death of their loved one. One quotation expresses the insufficient support after bereavement as follows: I am shocked, how one is left alone ( . . . ). (D2260.1)

Further suggestions for improvement in this category would include the possibility for families to stay overnight or a timely communication about the impending death of the loved one. In the system of categories related to deficiencies, a striking issue is the helplessness of bereaved family members caused by a lack of information: ( . . . ) about 3 months after the death we still did not know the cause of death (besides the illness). Immediately after the sudden death there was helplessness. (D1387.2)

Main Category ‘‘Psychological and Spiritual Welfare’’ Some bereaved family members considered counseling, pastoral, or psychological support to be expandable. Pastoral care by the hospital’s pastor or the parish pastor was seen as valuable help. The availability of psychologists on hospital units was desired as well. More psychological support for the ill as well as the families. (V1021)

This demand is confirmed by a statement of deficiency:

( . . . ) Physicians beat around the bush instead of talking in plain language. What a pity. (V3047.3) The information in the hospital was deficient ( . . . ). (D81.1)

One bereaved family member criticized that the subject of death and dying had hardly been brought up by hospital staff: There had been little talk about the ending in hospital ( . . . ). (D609.1)

Main Category ‘‘Structural Aspects in Hospital Management’’ The suggestions collected here deal with organizational and structural aspects in hospital that impact the quality of care and the quality of dying on hospital wards. Some respondents made suggestions related to hospital transfers or admissions. Others demanded better accommodation for patients: One should not put up critically ill persons in three- or four-bed rooms without shower and WC. (V3174)

In the system of categories with regard to deficiencies, 1 quotation points out the unequal attendance of patients with and without private health insurance: ( . . . ) my husband and I do not have private health insurance and we clearly felt and experienced the difference. (D2062.5)

Downloaded from ajh.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 22, 2015

Bussmann et al

49

Considering the sociodemographic development in Germany, the following quotation addresses an essential issue for the present and future hospital care: ( . . . ) above all, geriatric departments are lacking in hospitals ( . . . ). (D1410.3)

Discussion Main Findings Although nearly half of all people die in a hospital setting, there is a lack of empirical data about hospital EOL care in Germany. Our study shows that the views and suggestions of families might be a valuable source of knowledge how to improve EOL care in German hospitals. The results clearly indicate the extent of dying patients’ and their families’ suffering through structural deficiencies in general hospital health care. A wide range of answers refer to the lack of availability of health care professionals who are qualified and have time-related capacities to focus on the patients’ problems and concerns. Further they suggest the strong wish for clear, understandable, and transparent information and communication. Two recently published studies that investigated citizens’ views across Europe20,21 also highlight patients’ preferences for being comprehensively informed. The German participants especially called for information about death, dying, and palliative care options. The results of Elliott et al indicate that particularly a good communication between patients and nurses is closely related to the overall rating of care.22 Many respondents in our study expressed the wish for a holistic health care beyond the purely medical treatment. An important element of such holistic health care is a humane social interaction with both patients and families which include empathy, appreciation, compassion, and kindness. Schoenfelder et al also highlighted the importance of interactional factors showing that nurses’ and physicians’ kindness is one of the most important determinants of patient’s satisfaction with hospital care.23 Further elements are professional psychological care and spiritual welfare as well as paying attention to the needs and the suffering of families and offering them adequate support. The reported experiences highlight the importance of creating framework conditions that allow dying in dignity on standard hospital wards. Providing a single room for a dying person and allowing to say goodbye to loved ones as well as personnel that is qualified in dealing with dying people are conditions that seem to be lacking for some patients in general hospitals. Family members in our study made the experience that their wishes about the EOL care were not always respected. Becker et al showed that one-third of the dying patients in a German acute hospital still received active lifesustaining treatment.3 A lot of studies yet have shown that people prefer quality of life over life-extending treatment in the last hours.20,24 Different aspects could explain the attachment

on life-sustaining interventions in general hospital settings: difficulties in recognizing that somebody is dying and also health care professionals’ negative perceptions of palliative care and a misunderstanding of ‘‘giving up’’ when shifting treatment strategy could contribute to miss out timely taking adequate measures which enable dying in dignity.24 However, it should be noted that not all wishes of patients and family members can be met in the terminal phase, in view of the fact that euthanasia or physician-assisted suicide are forbidden by law in Germany. Our results are in line with previous studies that have focused on patients’ and family members’ views on and evaluations of health care. They have also highlighted that a high quality EOL care needs to be based on both, good medical treatment and nursing, as well as appreciating interpersonal relationships.15,22,25-27 Failure in 1 of the 2 aspects can cause increased patient suffering.26

Implications Important ideas for future improvement in health care quality can be deduced from the experiences and perspectives of bereaved family members in order to reduce suffering of patients and families. Necessary conditions for most of these improvements are an adequate staff ratio and sufficient financial resources. If the personnel lack time for detailed communication, it is difficult for physicians and nurses to inform patients and families in a comprehensive and clear manner. Becker showed that the average time a physician spent communicating with a single patient in German hospital wards was about 4 min/d and communication with families took only 20 seconds.28 However, patient communication competence can be enhanced by training modules.29-31 Courses in which participants learn how to conduct difficult conversations with simulation patients show positive results, but currently they are not an integral element of medical education or staff trainings in Germany.32 Beyond communication with patients, the contact between professionals and families plays an important role in hospital health care, especially in the care of terminally ill patients. The integration of structured family meetings with the team of health care professionals has been widely studied and demonstrated to significantly improve family satisfaction33 (for a review see Fawole et al34). Lautrette et al showed that structured family conferences with the care team focusing on 5 objectives were even able to reduce serious burden of bereavement like symptoms of depression, anxiety, or posttraumatic stress disorder.35 Although conversation with family members is time consuming, it is essential for a holistic health care plan. Meeting the needs of families should be given more importance in hospital health care and medical education. To improve the quality of care for dying people in hospital settings that are not specialized in palliative care, a concept was developed in Liverpool.36 The Liverpool Care Pathway (LCP) for the dying patient is a document that provides a clear structure how the individual professional groups should act in the last days or hours of a patient’s life. The holistic approach of

Downloaded from ajh.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 22, 2015

American Journal of Hospice & Palliative Medicine® 32(1)

50 the LCP covers physical, psychological, social, and spiritual domains of care and focuses on patients’ and family members’ well-being. In Germany, the LCP has been implemented first on only few hospital wards where it was evaluated as an appropriate instrument for improving quality of care for dying people.37 The integration of this LCP in German hospitals should have high priority to ensure that for all hospital patients the framework conditions for dying in dignity are provided.

Limitations Due to the explorative character of our study, the results are limited by the fact that our questionnaire was not tested for its psychometric criteria. The generalizability of the data is restricted because our sample included only inhabitants of Rhineland-Palatinate (Germany). Our random sample can be regarded as representative for the whole federal state. However, the procedure of data collection by mailing out questionnaires could have contributed to a selection bias. Furthermore, there are empirical findings indicating that evaluation of health care by family members could be biased by social psychological phenomena, for example social desirability.38 Such bias could have partly impaired the validity of our data, but the qualitative approach and the open-ended item formulation might have provided a framework that made it easier for families to express criticism in a constructive way. It must also be noted that the reports of bereaved family members could not be equated with patients’ experiences. It may be possible that interviewing terminally ill patients would have had results with a different emphasis. Nevertheless, it can be assumed that the views of families are at least in part representative of the patients’ views. Furthermore, family members’ views and their well-being additionally have a high priority from the perspective of the holistic palliative care approach. Acknowledgments The authors thank Mrs. Patricia Lee Meinhardt for her help in translating the manuscript.

Authors’ Note The first 3 authors contributed equally to the article. Fresenius Kabi Germany GmbH and the German Pharmaceutical Industry Association (BPI) had no role in the study design, collection, analysis, interpretation, or presentation of the information.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by Fresenius Kabi Germany GmbH and the German Pharmaceutical Industry Association (BPI).

References 1. Federal Statistical Office of Germany. Federal Health Monitoring System (IS-GBE) [in German]; 2013. http://www.gbe-bund.de/. Accessed February 18, 2013. 2. Escobar Pinzon LC, Weber M, Claus M, et al. Factors influencing place of death in Germany. J Pain Symptom Manage. 2011;41(5): 893-903. 3. Becker G, Sarhatlic R, Olschewski M, Xander C, Momm F, Blum HE. End-of-life care in hospital: current practice and potentials for improvement. J Pain Symptom Manage. 2007; 33(6):711-719. 4. Aiken LH, Sermeus W, Van den Heede K, et al. Patient safety, satisfaction, and quality of hospital care: cross sectional surveys of nurses and patients in 12 countries in Europe and the United States. BMJ. 2012;344:e1717. 5. Beccaro M, Caraceni A, Costantini M. End-of-life care in Italian hospitals: quality of and satisfaction with care from the caregivers’ point of view—results from the Italian Survey of the dying of cancer. J Pain Symptom Manage. 2010;39(6):1003-1015. 6. Al-Qurainy R, Collis E, Feuer D. Dying in an acute hospital setting: the challenges and solutions. Int J Clin Pract. 2009;63(3):508-515. 7. Edmonds P, Rogers A. ‘If only someone had told me . . . ’: a review of the care of patients dying in hospital. Clin Med. 2003;3(2):149-152. 8. Robinson J, Gott M, Ingleton C. Patient and family experiences of palliative care in hospital: what do we know? An integrative review. Palliat Med. 2013:1-16. doi:10.1177/0269216313487568. 9. Escobar Pinzon LC, Claus M, Zepf KI, Fischbeck S, Weber M. Symptom prevalence in the last days of life in Germany: the role of place of death. Am J Hosp Palliat Care. 2012;29(6):431-437. 10. Escobar Pinzon LC, Claus M, Zepf KI, Letzel S, Fischbeck S, Weber M. Preference for place of death in Germany. J Palliat Med. 2011;14(10):1097-1103. 11. Escobar Pinzon LC, Munster E, Fischbeck S, et al. End-of-life care in Germany: study design, methods and first results of the EPACS study (establishment of hospice and palliative care services in Germany). BMC Palliat Care. 2010;9:16. 12. Weber M, Claus M, Zepf KI, Fischbeck S, Escobar Pinzon LC. Dying in Germany—unfulfilled needs of relatives in differenct care settings. J Pain Symptom Manage. 2012;44(4):542-551. 13. Mayland C, Williams E, Ellershaw J. How well do current instruments using bereaved relatives’ views evaluate care for dying patients? Palliat Med. 2008;22(2):133-144. 14. Shiozaki M, Morita T, Hirai K, Sakaguchi Y, Tsuneto S, Shima Y. Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study. Palliat Med. 2005;19(4):319-327. 15. Bleidorn J, Pahlow H, Klindtworth K, Schneider N. Versorgung von menschen am Lebensende. Erfahrungen und Erwartungen von hinterbliebenen Angeho¨rigen. Dtsch Med Wochenschr. 2012;137(25-26):1343-1348. 16. Klindtworth K, Cuno J, Schneider N, Wehkamp KH. Quality management on a palliative care unit—what can be gained from qualitative interviews with patients and their relatives? Z Palliativmed. 2010(11):180-187.

Downloaded from ajh.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 22, 2015

Bussmann et al

51

17. Mayring P. Qualitative Inhaltsanalyse: Grundlagen und Techniken. 11 ed. Weinheim: Beltz; 2010. 18. Hesse-Bieber S. Mixed-Methods Research: Merging Theory with Practice. New York: The Guilford Press; 2010. 19. Tappen R. Advanced Nursing Research: From Theory to Practice. London, UK: Jones & Bartlett Learning International; 2011. 20. Higginson IJ, Gomes B, Calanzani N, et al. Priorities for treatment, care and information if faced with serious illness: a comparative population-based survey in seven European countries [published online June 14, 2013]. Palliat Med. 2013. 21. Daveson BA, Alonso JP, Calanzani N, et al. Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe [published online July 13, 2013]. Eur J Public Health. 2013. 22. Elliott MN, Kanouse DE, Edwards CA, Hilborne LH. Components of care vary in importance for overall patient-reported experience by type of hospitalization. Med Care. 2009;47(8): 842-849. 23. Schoenfelder T, Klewer J, Kugler J. Determinants of patient satisfaction: a study among 39 hospitals in an in-patient setting in Germany. Int J Qual Health Care. 2011;23(5):503-509. 24. Willard C, Luker K. Challenges to end of life care in the acute hospital setting. Palliat Med. 2006;20(6):611-615. 25. Attree MJ. Patients’ and relatives’ experiences and perspectives of ‘Good’ and ‘Not so Good’ quality care. J Adv Nurs. 2001; 33(4):456-466. 26. Arman M, Rehnsfeldt A, Lindholm L, Hamrin E, Eriksson K. Suffering related to health care: a study of breast cancer patients’ experiences. Int J Nurs Pract. 2004;10(6):248-256. 27. Kumar G, Markert RJ, Patel R. Assessment of hospice patients’ goals of care at the end of life. Am J Hosp Palliat Med. 2011; 28(1):31-34. 28. Becker G, Kempf DE, Xander CJ, Momm F, Olschewski M, Blum HE. Four minutes for a patient, twenty seconds for a relative—an

29.

30.

31.

32.

33.

34.

35.

36. 37.

38.

observational study at a university hospital. BMC Health Serv Res. 2010;10:94. Weber M, Bo¨hler E, Kohler E. Kann Kommunikation mit unheilbar kranken Patienten gelehrt werden? Evaluation eines Kursmodells. Med Klin. 2003;98(9):477-483. Schildmann J, Vollmann J. Die Ausbildung kommunikativer ¨ bersicht empirischer Studien Fa¨higkeiten in der Medizin: Eine U zum Thema ‘‘Wahrheit am Krankenbett— schlechte Nachrichten mitteilen’’. Z Palliativmed. 2001;2(4):99-106. Langewitz W. Zur Erlernbarkeit der Arzt-Patienten-Kommunikation in der Medizinischen Ausbildung. Bundesgesundheitsbl. 2012; 55(9):1176-1182. ¨ rzte lernen schweigen—KommuNehls W, Gabrijel S, Bauer T. A nikationstraining in der Lungenklinik Heckeshorn. Z Palliativmed. 2012;13(5):A34. DE. Kaufer M, Murphy P, Barker K, Mosenthal A. Family satisfaction following the death of a loved one in an inner city MICU. Am J Hosp Palliat Care. 2008;25(4):318-325. Fawole OA, Dy SM, Wilson RF, et al. A systematic review of communication quality improvement interventions for patients with advanced and serious illness. J Gen Intern Med. 2013; 28(4):570-577. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356(5):469-478. Ellershaw J, Wilkinson S. Care of the Dying: A Pathway to Excellence. 2nd ed. Oxford: Oxford University Press; 2011. Simon S, Martens M, Sachse M, Bausewein C, Eychmu¨ller S, Schwarz-Eywill M. Sterbebegleitung im Krankenhaus—erste Erfahrungen mit dem ‘‘Liverpool Care Pathway’’ (LCP) in Deutschland. Dtsch med Wochenschr. 2009;134(27):1399-1404. Funk LM, Stajduhar KI, Robin Cohen S, Heyland DK, Williams A. Legitimising and rationalising in talk about satisfaction with formal healthcare among bereaved family members. Sociol Health Illn. 2012;34(7):1010-1024.

Downloaded from ajh.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 22, 2015