JOURNAL OF PALLIATIVE MEDICINE Volume 18, Number 9, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.0408
Communication and Quality of Care on Palliative Care Units: A Qualitative Study Dori Seccareccia, MD. MCISc,1,2 Kirsten Wentlandt, PhD, MD, MHSc,1 Nanor Kevork, BSc,3 Kevin Workentin, MD,2,4 Susan Blacker, MSW,5 Lucia Gagliese, PhD,3,6–8,11 Daphna Grossman, MD,2,9 and Camilla Zimmermann, MD, PhD 3,10,11
Abstract
Background: Clinician-patient communication is central in palliative care, but it has not been described qualitatively which specific elements of communication are important for high-quality palliative care, particularly in the inpatient setting. Objective: Our aim was to identify elements of communication that are central to quality of care and satisfaction with care on palliative care units (PCUs), as described by inpatients, family caregivers, and health care providers. Methods: Qualitative interviews with patients/caregivers and focus groups with staff were conducted on four PCUs. Semi-structured interviews and focus groups elicited thoughts about the characteristics of satisfaction with care and quality of care for PCU inpatients and their family caregivers. Data were analyzed using a grounded theory method with an inductive, constant comparison approach; themes were coded to saturation. Results: There were 46 interviews and eight focus groups. Communication was the most prevalent theme regarding satisfaction and quality of care, with five subthemes describing elements important to patients, caregivers, and staff. These included: 1) building rapport with patients and families to build trust and kinship; 2) addressing expectations and explaining goals of care; 3) keeping patients and families informed about the patient’s condition; 4) listening actively to validate patients’ concerns and individual needs; and 5) providing a safe space for conversations about death and dying. Conclusions: Patients, family caregivers, and health care providers affirmed that communication is a central element of quality of care and family satisfaction on PCUs. The five subthemes identified may serve as a structure for education and for quality improvement tools in palliative care inpatient settings.
views of various elements of quality care,4 or by identifying physician skills they associate with quality care.5 Other studies have included the perspectives of health care providers (HCPs) in the assessment of quality care at the end of life.5–7 Skillful communication with patients and families is crucial in the provision of quality end-of-life care,5,8 and has a negative impact when lacking.9 Previous studies have shown that communication is important in diverse end-of-life settings, including palliative care units (PCUs), hospices, and acute care
Introduction
I
n the pursuit of high-quality patient care, routine assessment of clinical care has become a priority,1 particularly in palliative care.2 One manner of doing so is through surveys of satisfaction with care, which solicit the opinions of patients and caregivers regarding the quality of care they receive.3 Recent studies have described quality end-of-life care from the perspectives of patients and families by probing their 1
Department of Psychosocial Oncology, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada. Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada. Department of Supportive Care, University Health Network, Toronto, Ontario, Canada. 4 Department of Family Medicine, Toronto East General Hospital, Toronto, Ontario, Canada. 5 Department of Cancer Services Planning and Performance, St. Michael’s Hospital, Toronto, Ontario, Canada. 6 Department of Anesthesia and Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada. 7 School of Kinesiology and Health Sciences, York University, Toronto, Ontario, Canada. 8 Department of Anesthesia, University Health Network, Toronto, Ontario, Canada. 9 Department of Family and Community Medicine, Baycrest Health Sciences, Toronto, Ontario, Canada. 10 Division of Medical Oncology and Hematology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada. 11 Campbell Family Cancer Research Institute, Ontario Cancer Institute, Toronto, Ontario, Canada. Accepted May 5, 2015. 2 3
1
2
units, and empathy has been emphasized as important in this context.5,10–12 In a study of goals-of-care discussions, elements of these discussions that were considered important by seriously ill inpatients and their families were preferences for care in the event of life-threatening illness, values, prognosis, fears or concerns, and questions about goals of care.13 Physician surveys of communication with patients at the end of life have revealed poor knowledge of communication strategies14 and a neglect of social and spiritual issues.15 However, to our knowledge, no previous studies have described qualitatively which specific elements of communication are important for satisfaction with palliative care. This paper was part of a larger qualitative study that sought to understand the key elements of satisfaction with care and quality of care for PCU inpatients, from the point of view of patients, families, and HCPs. Data from this study revealed six discrete themes: interprofessional team; communication; attentive, personalized, competent care; family centered; access and continuity; and supportive setting. Communication was a dominant and complex theme, spanning across all aspects of satisfaction with care except supportive setting, and its five subthemes are the focus of this paper. The remaining themes will be discussed in a separate paper. Methods Study setting and participants
This study took place on four inpatient PCUs in Toronto, Canada, to reflect a diverse sample of palliative HCPs and patients. Approval was granted by the Research Ethics Boards at Baycrest Health Sciences, St. Michael’s Hospital, Toronto East General Hospital, and Princess Margaret Cancer Centre to conduct one-on-one patient interviews and family caregiver interviews, and focus groups of palliative care HCPs at each center between November 2010 and July 2012. Baycrest is an academic geriatric center that includes a 31bed PCU for oncology and nononcology patients. The average stay is 21 days and a minimum age for patient admission is 56 years. Princess Margaret is a large comprehensive cancer center, with a 12-bed oncology PCU with an average stay of 11 days.16 St. Michael’s Hospital is an urban acute care research and teaching hospital, housing a 10-bed PCU for oncology and nononcology patients with an average stay of 17 days. Toronto East General Hospital is a full-service community teaching hospital; its PCU has 16 beds for oncology and nononcology patients, with an average length of stay of 30 days. Eligibility criteria for patients and caregivers included being at least 18 years old; having adequate English communication skills; having been on the PCU for at least 48 hours; and being well enough to conduct an interview. HCPs had a minimum age requirement of 18 years; at least one year of experience working on a PCU; and at least 6 months of experience on the PCU of current employment. Non-PCU HCPs who referred regularly to their institution’s PCU were also deemed eligible, as were volunteers who fulfilled the eligibility criteria. Site investigators and PCU managers/coordinators helped identify eligible patients/caregivers. The research coordinator approached interested patients/caregivers for consent and to arrange an interview. Interested HCPs contacted the research coordinator to arrange focus groups. We used selective sampling to represent a range of disciplines among HCPs, and to strive for a varied age and ethnic background
SECCARECCIA ET AL.
among participants. Informed consent was reviewed and signed prior to partaking in the study, and participants completed a brief demographic questionnaire. Interviews and focus groups
Patients and family caregivers were interviewed separately by research coordinator (NK) or co-investigator (KW). Focus groups were conducted by the research coordinator and a coinvestigator (DS) and/or professional facilitator. Sessions were held in a private, comfortable room and lasted approximately one hour. Interview and focus group guides were semi-structured and used open-ended questions to generate discussion (e.g., ‘‘From your experience what characterizes satisfaction for inpatients on the PCU?’’; ‘‘What does the phrase ‘quality of care’ bring to mind?’’). Follow-up questions were based on ensuing discussions and targeted components of providing quality care to inpatients on a PCU. Participants were encouraged to offer examples from their experience. Interviews and focus groups were audio-recorded. Data analysis
Interview and focus group recordings were transcribed by a professional transcription service and were verified for accuracy. Transcripts were reviewed regularly by the coding team, consisting of the research coordinator (NK) and three study investigators (DS, KW, and CZ). Data analysis was carried out using Strauss and Corbin’s grounded theory method of analysis17 using inductive, constant comparison to identify themes and conceptual categories for each line on transcripts. Interview and focus group guides were amended to reflect emerging themes. Data were coded and the process was repeated to identify further themes, to draw out nuances in the data until saturation was reached and quotes were selected to represent key views. The qualitative computer software package NVivo 818 was used to facilitate the coding process. Results
There were 85 participants: 46 interviewees (23 patient participants [PT] and 23 family-caregiver participants [CG]), and 39 focus group participants (health care providers [HCP]). Two focus groups were conducted at each hospital, with a median of 5 HCP participants (range: 2 to 8). Each focus group was interdisciplinary, with at least two professions per group, including 11 nurses, 5 social workers, 4 physicians, and 4 unit managers. Further details are shown in Table 1. Communication was identified as a cornerstone for patient and family caregiver satisfaction in the focus groups and individual interviews, encompassing five prominent subthemes: 1) building rapport with patients and families; 2) addressing expectations and explaining goals of care; 3) keeping patients and families informed about the patient’s condition; 4) listening actively to patients’ concerns and individual needs; and 5) providing a safe space for conversations about death and dying. Building rapport with patients and families
Building good rapport between staff and patients/ caregivers was considered essential on a PCU where ‘‘interaction is fundamental’’ (PT403) (Box 1). Focus groups revealed that staff often set the tone of relationships with patients by initiating dialogue; participants noted that patients/caregivers were ‘‘thankful for [staff] coming in and sitting and talking to
COMMUNICATION AND QUALITY OF CARE ON PALLIATIVE CARE UNITS
3
Table 1. Demographics Characteristic Age, years Median (years) Range (years) Not answered Sex Female Male Participants per site Baycrest TEGH St Michael’s Hospital Princess Margaret Role on PCU Nurse Social work Physician PC manager Chaplain Occupational therapist Volunteer Othera Primary illnessb Cancer Other Ethnicity European Non-European Not answered
Focus group N = 39 (%)
Patient N = 23 (%)
Caregiver N = 23 (%)
46 27–71 5 (13)
69 42–90 0
61 38–86 0
34 (87) 5 (13)
14 (61) 9 (39)
19 (83) 4 (17)
13 12 8 6
(33) (31) (21) (15)
11 5 4 4 3 3 2 7
(28) (13) (10) (10) (8) (8) (5) (18)
5 7 4 7
(22) (30) (17) (30)
6 8 6 3
(26) (35) (26) (13)
-
-
-
23 (100) 0
18 (78) 5 (22)
26 (67) 8 (20) 5 (13)
21 (91) 2 (9) 0
20 (87) 3 (13) 0
a
Other: respiratory therapist, recreational therapist, physiotherapist, dietician, pharmacist, personal support worker, speech pathologist. Primary illness in the caregiver column refers to the primary illness of the patient for whom they care. There were two instances where patients and caregivers were paired. TEGH, Toronto East General Hospital; PCU, palliative care unit. b
them’’ (HCP30). Patients stated that good rapport with staff provided a sense of belonging and made them feel the care was genuine. Patients perceived good quality care when staff made the effort to learn patient and family members’ names, and they in turn could identify staff by name: ‘‘you get to know them on
a personal level as opposed to just professional, and that helps’’ (PT104). Nonverbal communication—a feeling of ‘‘connection’’ or ‘‘just sitting there being with them’’ (HCP33)—was identified as important to establishing a relationship of mutual trust.
Box 1. Examples of Quotations Regarding Building Rapport ‘‘They’re just warm and friendly and smiling. They just make you feel comfortable.’’ (CG452) ‘‘Kindness and warmth. That just means opening up your mouth and talking and talking with care like you go beyond just being a case number on a file and talking about nursing protocol.. It makes you feel as I say as if you have a sense of belonging. To me, that means just opening up your mouth and becoming a friend.’’ (PT404) ‘‘They’re very nice. They’re always chatty. To me it’s like a big family. That’s what it’s like. It’s nice. It’s homey. They’re very considerate, very much so.’’ (CG150) ‘‘Some things can be as simple as the act of the nurse writing her name on the board, which is a little thing, but it’s a big thing so when the person looks up out of their bed in the morning, they can see who their person is.’’ (HCP2) ‘‘You just share something with them and you get to know something about that person or that family or that mother or father that’s in the bed. A lot of family members really appreciate that because they are alone at that moment.’’ (HCP37) ‘‘The trust develops through the relationships with nursing, with medicine, with physio, OT, spiritual care..It’s about developing those relationships.’’ (HCP4) ‘‘I think it’s a connection.You know there’s a relationship there. She feels comforted, there’s trust.’’ (CG356) ‘‘A nurse that I hadn’t seen before, don’t even know the name of, she just took my hand and just that gesture, it just got to me. I just came to the realization that you know what, you don’t have to do it alone; these people are here, this is their job. They’re here to make you feel better. They’re here to listen to you. They’re here to do whatever they can to make you better. Just that one gesture just blew me away.’’ (PT102) ‘‘As humans, we like that contact. It’s sort of nurturing and shows caring,’’ a lack of which reminds the patient of ‘‘a typically cold, sterile environment.’’ (PT152)
4
SECCARECCIA ET AL.
Box 2. Examples of Quotations Regarding Discussions about Goals of Care ‘‘Initially the caregivers may perceive that there’s a lack of quality of care. Then I think once the nurses and the physicians explain what the goals are and how this will affect their journey they become more satisfied. I think part of that is the education that’s provided to the caregiver.’’ (HCP27) ‘‘They were everyone from dietician to pharmaceutical to everything. I basically had a meeting with every one of them to keep me abreast of what to expect and what they’re going to do if I had any questions or concerns, not to hesitate to call them or anything. They’ve been really, really good that way.’’ (CG455) ‘‘We comfort them with a care plan.’’ (HCP36) ‘‘What their goals are for me, they’ve been upfront.They’re very open with their information, they don’t hold back.’’ (PT105) ‘‘Just getting that information, getting that philosophy of care, explaining it to them early, I found has helped the transition to palliative care.’’ (HCP25) ‘‘Different understandings, different kinds of information that people have been given. Some people haven’t even been told that they’ve been palliative and then they’re wondering why they’re there.’’ (HCP24) ‘‘One patient recently who had a palliative consult and his family said, ‘‘All this time, we’ve had.different specialists come in and give us one piece of the puzzle but the palliative physician put it together and gave us the whole piece and took the time to do that.’’ They were able to make decisions and be at peace with those decisions.’’ (HCP38) ‘‘They do an excellent job with the loved ones and family.explaining.and giving them a briefing.and actually make the patients feel very welcome.’’ (CG450) Addressing expectations and explaining goals of care
Communicating with patients and caregivers about the plan of care was perceived to provide them the opportunity to convey their priorities and for staff to reinforce the goals of care (Box 2): ‘‘explaining what this unit is all about’’ and ‘‘what they’re going to do’’ (CG450). Importantly, a caregiver who felt the plan of care was inadequately communicated noted that this ‘‘seems to me a fairly simple thing to do’’ (CG252). HCPs felt that explaining goals of care to patients and caregivers helped define ‘‘what treatment means’’ (HCP2) congruent with a palliative approach. Similarly, patients and caregivers noted that being given this information made them feel at ease: ‘‘I didn’t even have a question to ask because everything got answered prior to me asking the question. I felt very confident’’ (CG455). Keeping patients and families informed
Patients, caregivers, and staff endorsed the importance of maintaining open communication by updating patients and caregivers with news about the patient’s condition (Box 3). This was perceived to be vital to increasing their sense of connection: ‘‘[PCU doctor] never kept me in the dark with
anything. She’s very explanatory about what my wife is experiencing and what she could be experiencing in the future’’ (CG455). This aspect of communication included explaining procedures before implementing them; discussing the trajectory of illness, changes in medication, and the patient’s eventual decline; and letting the patient know their call was heard and would be answered shortly. As one caregiver expressed: ‘‘They do tell me, ‘It’ll be a few minutes,’ or ‘We’re just finishing here and then we’ll be in.’.It’s comforting to be kept aware of what’s going on to some degree’’ (CG252). In contrast, a lack of information caused uneasiness: ‘‘I think keeping the family updated with what’s going on about the client, that’s a big factor.not knowing makes them more anxious’’ (HCP31). Listening actively
Listening actively, or ‘‘hearing what the patient is saying, not just listening to the words’’ (HCP35) was perceived to be of central importance (Box 4). For staff, this meant reading deeper into what patients and caregivers were saying in order to understand their emotional state. It also included taking time to focus attention on patient/caregiver concerns or simply being available. Patients and caregivers spoke highly
Box 3. Examples of Quotations Regarding Keeping the Patient and Caregiver Informed ‘‘We lose the control on what’s happening with my husband at whichever time because I don’t want somebody just to come and say, ‘We’re doing this, this, this and this,’ without me knowing what’s going on or what the effects are.’’ (CG150) ‘‘Well anyway, just keeping them on medication though, I think that they definitely should have been consulting with the family.’’ (CG253) ‘‘Having someone come and sit down and take their time to explain to the point that they actually understand what’s happening is so important because then they are not objectified.’’ (HCP39) ‘‘As far as that’s concerned, I’ve been kept in the loop and happy about that.’’ (CG353) ‘‘I just hope they realize that discussions or consultations beforehand can do a lot to make it better.’’ (CG456) ‘‘It’s hard for people to cope if they don’t know what’s happening and they don’t understand.’’ (PT300) ‘‘We hear it all the time. That ‘actually I didn’t know what was going on with me,’ or just to put it in layman’s terms that this is what’s happening.’’ (HCP28)
COMMUNICATION AND QUALITY OF CARE ON PALLIATIVE CARE UNITS
5
Box 4. Examples of Quotations Regarding Listening Actively ‘‘Sometimes it’s just about listening and validating what they’re feeling and recognizing it and then moving forward and offering support.’’ (HCP29) ‘‘They listen. They listen to their patients. They look at them. They look for.they have to get to know people a little bit,’’ (CG252) ‘‘I found at St. Mike’s they were really good at, sort of, reading it and listening actively and hearing what her concerns were and talking to her so that she was understood. Her fears were certainly heard but they talked to her to try and ease the situation.’’ (CG456) ‘‘You know they are focusing where you have the pain or you have other stuff or things or personal things to talk about. You know that they’re not just saying ‘how are you doing?’ They are there and they listen to you.’’ (PT302) ‘‘Complaints I think would stem from situations where patients or families feel their autonomy has been compromised.They haven’t been heard. I think it generally comes from that.’’ (HCP1) ‘‘Again it comes back to listening to what they need to do and I think if they feel that they’re listened to then you get the patient satisfaction and they feel like there’s better quality of life.’’ (HCP26) ‘‘She’s had to deal with a lot. Hence the reason why a little more listening and tuning in goes a long way.’’ (CG456) ‘‘It is very much linked, the feeling that they’re being listened to and we’re doing what they’ve requested or at least trying our very hardest to meet those needs.When we focus on their wishes and their needs and being there to listen to their family and the patient we do get that response.saying how happy they were with the treatment that they received.’’ (HCP18)
of staff who ‘‘take the time to talk to you and find out about you’’ (PT101). Participants also remarked that listening attentively without necessarily having answers was sometimes enough: ‘‘I find that it’s great that [volunteers] listen to me. They don’t give me any advice, but they do listen to me.and that helps me sort out my own life’’ (PT401). Active listening also provided staff insight into patients as individuals, helping them identify specific needs. Indeed, it was perceived to underpin the patient’s plan of care: ‘‘When you have the time for the person to be really heard, then for the team to come together and share those ideas and then formulate a plan.it’s pretty brilliant when it comes together’’ (HCP2). A safe space for conversations about death and dying
Unlike the previous four subthemes, where there was consistency of content across all participants, there was variation in the extent to which death and dying was discussed and in the opinions about this subject (Box 5). Six staff focus groups discussed this topic ardently, whereas two focus groups did not discuss it very much. Patients and caregivers
infrequently brought up the topic of death and dying in their discussions about satisfaction with care. In the instances when this topic was raised, there were differing opinions regarding how this topic influenced satisfaction with care. The majority of HCPs who engaged in discussions about this topic passionately emphasized the importance of discussing death and dying with patients and families, and informing them of what to expect when a patient declines. Palliative care staff stated that such discussions promoted a safe environment for patients to talk about fears associated with death, and that ‘‘this is something you develop working with this population.the art of talking to dying patients’’ (HCP8). Focus groups stated that witnessing patients’ and caregivers’ emotions and offering counsel when appropriate, including on issues such as grief and death, was a ‘‘basic principal of what any good PCU should be able to do’’ (HCP7). Interview comments were mainly by caregivers, who were divided in their opinions about whether or not staff should be direct with patients about their decline. Some caregivers expressed appreciation for the candor: ‘‘They give it to you as it is, which is good. I don’t think people should be left in the dark’’ (CG454), whereas other caregivers did not want this
Box 5. Examples of Quotations Regarding Discussions of Death and Dying ‘‘Sometimes you prepare people way in advance, because people have questions like what’s going to happen to me. What’s the end going to look like? A lot of people think it’s some horrific cataclysmic experience and it’s not.’’ (HCP28) ‘‘They came to tell him that this is the end of his life and they don’t know when he’s going to go.and he accepted it, which is amazing because he never wanted to accept the fact that he was dying.’’ (CG250) ‘‘You don’t shun away from the word dying. You use the D-word. I think that as soon as you do, you give people the permission to talk about it as well. Or they give themselves the permission to talk about it. It’s often like the elephant in the room. Calling it for what it is is often a profound moment and an opportunity for a lot of release.’’ (HCP33) ‘‘You want a lot of honesty from them. It must be honest.’’ (CG357) ‘‘I told them that if they know how long I have, I don’t want to know. I really don’t. I don’t want to hear nothing about nothing.’’ (PT301) ‘‘That could be issues with fear, fear around death, and what’s that going to look like for their loved one. Are they going to suffer? Even if they’re peaceful and sleeping in bed and they’re fine, they are often concerned that their loved one’s suffering.’’ (HCP24)
6
subject discussed with the patient: ‘‘I don’t think it’s proper for doctors or nurses to be straightforward with patients. I don’t find it right’’ (CG351). Few study patients remarked on discussions about death and dying, but in those instances comments were negative: ‘‘It bothers you the fact that you have a limited time’’ (PT201). However, staff members discussed examples of patients’ anxiety that seemed to stem from not talking about their fears of death and dying, which was alleviated when they presented them with the opportunity for discussion. Overall, there was tension in this subtheme about whether or not to be forthright with patients about death and dying, and how this influenced satisfaction with care. Discussion
In this qualitative study, communication emerged as an important and overarching aspect of quality of care for palliative care inpatients, caregivers, and staff. This is in keeping with its standing as one of the core tenets of palliative care.19,20 Five important subthemes were identified, which together provide a framework for high-quality communication with patients and their families, particularly in the PCU setting. Building rapport was emphasized as a key approach to supporting family members whose loved ones are dying in intensive care units,21 acute ambulatory care settings,22 and inpatient oncology units.23 In our study, building rapport laid the foundation to facilitate communication of the other themes; participants felt that this rapport exceeded that of typical relationships in nonpalliative settings such as acute care units, and allowed patients and their families to develop trust in the staff. This finding is in keeping with other research suggesting that there may be greater satisfaction with communication in palliative care settings such as PCUs and hospices.11,24 Addressing expectations and explaining goals of care were essential for patients and families, especially for those struggling with a patient’s prognosis. Failure to establish a mutual understanding can lead to misaligned expectations, distress, unmet needs, and a perceived low quality of care.11,15 Ensuring that conversations about goals of care were initiated soon after admission, and including families in this process, served to clarify understanding of the illness, educate about available services, and set realistic expectations. Solidifying the care plan made staff aware of patients’ and families’ level of understanding and allowed them the opportunity to align their expectations with the care that would be provided. Our study also demonstrated that keeping patients and family members informed about daily care provides them with a sense of control, of having respect from staff, and of being part of the care team. Staff noted that patients and caregivers relaxed in response to information about routine care, and felt that it improved their overall relationships with them. These findings are in keeping with previous work demonstrating that honest, consistent, clear provision of information from physicians and nurses improves satisfaction with care of seriously ill patients and their families in inpatient, outpatient, and home care programs.4 In a study on an intensive care unit, instances where nurses were perceived as caring, providing information honestly, and supporting decision making, assisted families to cope and have confidence in the care provided.21 The study findings confirm that the sense of being heard enables other aspects of communication,20 particularly with respect to establishing trusting relationships with physi-
SECCARECCIA ET AL.
cians25 and nurses.26 Similar to ‘‘building rapport,’’ there is an emotional component to the subtheme ‘‘active listening,’’ in that it is instrumental to patients’ perception of HCPs as empathic,14,26 allowing them to feel consoled and achieve acceptance.26 Active listening reduces patient anxiety26 and has demonstrated positive psychotherapeutic outcomes.27 It also helps staff understand how much patients and families grasp of what is occurring, allowing a better understanding of their emotional states so that staff may offer appropriate support.10 Perhaps most importantly, it shows patients and family members that HCPs regard them as individuals.25 The subtheme of a safe space for conversations about death and dying provided a unique and important contribution regarding end-of-life communication. Although this topic was discussed ardently in most of the focus groups, it was brought up less often in caregiver interviews, and even more rarely in those with patients. Among the caregivers who mentioned this topic, some felt discussions about dying should be candid and others spoke strongly against discussing death with the patient, arguing it would burden them with negativity. In other studies involving patients, families, and HCPs, the majority of participants felt that the willingness of health care workers to talk about death and dying was important.5,28 In our study, staff who discussed this topic felt that discussing dying with patients could help prepare them and their families for the patients’ decline, consequently relieving emotional suffering at the time of patient death. Although this approach is endorsed in the literature,7,29,30 clinicians should attend to their own biases as well as patients’ and families’ cues and wishes regarding the content, style, and timing of information31,32 and be attuned to the range of desire for disclosure concerning this topic.25 This study had limitations. The study was conducted in PCUs, possibly limiting its application to other settings; however, the tenets of communication it describes are broadly relevant. Interviews were limited to English speakers, which might have restricted the cultural variability in the interview content, although primary caregivers of non-English-speaking patients were included. Despite efforts to recruit a varied sample, there were relatively more nurses, women, and patients with cancer, reflecting the demographics of the populations that were being recruited, and their willingness to participate. Interviews with inpatients averaged 30 minutes instead of the intended one hour due to patient fatigue. Communication is a crucial element of quality care on PCUs. The five subthemes that emerged from the data deepen our understanding of this core skill for HCPs, and may serve as a structure for education and quality improvement tools in palliative care inpatient settings. Comparative research is necessary to determine the relative importance of these subthemes in other settings. Based on these subthemes, as well as the other themes identified in this research, we are developing and validating a questionnaire to assess patient and family satisfaction on PCUs. Acknowledgments
This study was funded by the Bluma Appel Palliative Care Research Fund and the Ontario Ministry of Health and Long Term Care. Dr. Zimmermann is supported by the Rose Family Chair in Supportive Care, Faculty of Medicine, University of Toronto. The views expressed do not necessarily reflect those of the funding agencies, which also had no role
COMMUNICATION AND QUALITY OF CARE ON PALLIATIVE CARE UNITS
in the study design, data collection, analysis and interpretation, writing, or decision to submit for publication. Dr. Kirsten Wentlandt is supported by a Department of Family and Community Medicine Investigator Award. Author Disclosure Statement
No competing financial interests exist. References
1. Leavitt M: Medscape’s response to the Institute of Medicine Report: Crossing the quality chasm: A new health system for the 21st century. MedGenMed 2001;3:2. 2. Kamal AH, Hanson LC, Casarett DJ, et al.: The quality imperative for palliative care. J Pain Symptom Manage 2015;49:243–253. 3. Dy SM, Shugarman LR, Lorenz KA, et al.: A systematic review of satisfaction with care at the end of life. J Am Geriatr Soc 2008;56:124–129. 4. Heyland DK, Cook DJ, Rocker GM, et al.: Defining priorities for improving end-of-life care in Canada. CMAJ 2010;182:E747–E752. 5. Curtis JR, Wenrich MD, Carline JD, et al.: Understanding physicians’ skills at providing end-of-life care perspectives of patients, families, and health care workers. J Gen Intern Med 2001;16:41–49. 6. Vedel I, Ghadi V, Lapointe L, et al.: Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: A qualitative study. Palliat Med 2014;28:1128–1138. 7. Steinhauser KE, Clipp EC, McNeilly M, et al.: In search of a good death: Observations of patients, families, and providers. Ann Intern Med 2000;132:825–832. 8. Buckman R: Communication skills in palliative care: A practical guide. Neurol Clin 2001;19:989–1004. 9. Back AL, Anderson WG, Bunch L, et al.: Communication about cancer near the end of life. Cancer 2008;113(7 Suppl): 1897–1910. 10. Kelley KJ, Kelley MF: Teaching empathy and other compassion-based communication skills. J Nurses Prof Dev 2013;29:321–324. 11. Gallagher R, Krawczyk M: Family members’ perceptions of end-of-life care across diverse locations of care. BMC Palliat Care 2013;12:25. 12. Patrick DL, Curtis JR, Engelberg RA, et al.: Measuring and improving the quality of dying and death. Ann Intern Med 2003;139(5 Pt 2):410–415. 13. You JJ, Dodek P, Lamontagne F, et al.: What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. CMAJ 2014; 186:E679–E687. 14. Trovo de Araujo MM, da Silva MJ: [Communication strategies used by health care professionals in providing palliative care to patients]. Rev Esc Enferm USP 2012;46:626–632. 15. Evans N, Costantini M, Pasman HR, et al.: End-of-life communication: A retrospective survey of representative general practitioner networks in four countries. J Pain Symptom Manage 2014;47:604–619. 16. Bryson J, Coe G, Swami N, et al.: Administrative outcomes five years after opening an acute palliative care unit at a comprehensive cancer center. J Palliat Med 2010;13:559–565. 17. Strauss A, Corbin JM: Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Thousand Oaks, CA: Sage Publications; 1990.
7
18. NVivo qualitative data analysis software. Version 8. QRS International Pty Ltd.; 2008. 19. Bruera E, Neumann CM, Mazzocato C,et al.: Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients. Palliat Med 2000; 14:287–298. 20. Zachariae R, Pedersen CG, Jensen AB, et al.: Association of perceived physician communication style with patient satisfaction, distress, cancer-related self-efficacy, and perceived control over the disease. Br J Cancer 2003;88: 658–665. 21. Adams JA, Anderson RA, Docherty SL, Tulsky JA, Steinhauser KE, Bailey DE, Jr. Nursing strategies to support family members of ICU patients at high risk of dying. Heart Lung 2014;43:406–415. 22. Dean M, Oetzel J, Sklar D: Communication in acute ambulatory care. Acad Med 2014;89:1617–1622. 23. Tay LH, Hegney D, Ang E: Factors affecting effective communication between registered nurses and adult cancer patients in an inpatient setting: A systematic review. Int J Evid Based Healthc 2011;9:151–164. 24. Enguidanos S, Housen P, Penido M, et al.: Family members’ perceptions of inpatient palliative care consult services: A qualitative study. Palliat Med 2014;28:42–48. 25. Murray CD, McDonald C, Atkin H: The communication experience of patients with palliative care needs: A systematic review and metasynthesis of qualitative findings. Palliat Support Care 2015;13:369–383. 26. Langegard U, Ahlberg K: Consolation in conjunction with incurable cancer. Oncol Nurs Forum 2009;36:E99–E106. 27. Elliott R, Bohart AC, Watson JC, Greenberg LS: Empathy. Psychotherapy (Chic) 2011;48:43–49. 28. Steinhauser KE, Christakis NA, Clipp EC, et al.: Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284: 2476–2482. 29. Buecken R, Galushko M, Golla H, et al.: Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues? Patient Educ Couns 2012;88:318–324. 30. Slort W, Blankenstein AH, Deliens L, van der Horst HE: Facilitators and barriers for GP-patient communication in palliative care: A qualitative study among GPs, patients, and end-of-life consultants. Br J Gen Pract 2011;61:167–172. 31. Parker SM, Clayton JM, Hancock K, et al.: A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/ caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 2007;34:81–93. 32. Zimmermann C: Denial of impending death: A discourse analysis of the palliative care literature. Soc Sci Med 2004 Oct;59:1769–1780.
Address correspondence to: Camilla Zimmermann, MD, PhD Palliative Care Program Department of Supportive Care Princess Margaret Hospital 610 University Avenue, 16-712 Toronto, Ontario, Canada M5G 2M9 E-mail: [email protected]
Communication and Quality of Care on Palliative Care Units: A Qualitative Study Dori Seccareccia, MD. MCISc,1,2 Kirsten Wentlandt, PhD, MD, MHSc,1 Nanor Kevork, BSc,3 Kevin Workentin, MD,2,4 Susan Blacker, MSW,5 Lucia Gagliese, PhD,3,6–8,11 Daphna Grossman, MD,2,9 and Camilla Zimmermann, MD, PhD 3,10,11
Abstract
Background: Clinician-patient communication is central in palliative care, but it has not been described qualitatively which specific elements of communication are important for high-quality palliative care, particularly in the inpatient setting. Objective: Our aim was to identify elements of communication that are central to quality of care and satisfaction with care on palliative care units (PCUs), as described by inpatients, family caregivers, and health care providers. Methods: Qualitative interviews with patients/caregivers and focus groups with staff were conducted on four PCUs. Semi-structured interviews and focus groups elicited thoughts about the characteristics of satisfaction with care and quality of care for PCU inpatients and their family caregivers. Data were analyzed using a grounded theory method with an inductive, constant comparison approach; themes were coded to saturation. Results: There were 46 interviews and eight focus groups. Communication was the most prevalent theme regarding satisfaction and quality of care, with five subthemes describing elements important to patients, caregivers, and staff. These included: 1) building rapport with patients and families to build trust and kinship; 2) addressing expectations and explaining goals of care; 3) keeping patients and families informed about the patient’s condition; 4) listening actively to validate patients’ concerns and individual needs; and 5) providing a safe space for conversations about death and dying. Conclusions: Patients, family caregivers, and health care providers affirmed that communication is a central element of quality of care and family satisfaction on PCUs. The five subthemes identified may serve as a structure for education and for quality improvement tools in palliative care inpatient settings.
views of various elements of quality care,4 or by identifying physician skills they associate with quality care.5 Other studies have included the perspectives of health care providers (HCPs) in the assessment of quality care at the end of life.5–7 Skillful communication with patients and families is crucial in the provision of quality end-of-life care,5,8 and has a negative impact when lacking.9 Previous studies have shown that communication is important in diverse end-of-life settings, including palliative care units (PCUs), hospices, and acute care
Introduction
I
n the pursuit of high-quality patient care, routine assessment of clinical care has become a priority,1 particularly in palliative care.2 One manner of doing so is through surveys of satisfaction with care, which solicit the opinions of patients and caregivers regarding the quality of care they receive.3 Recent studies have described quality end-of-life care from the perspectives of patients and families by probing their 1
Department of Psychosocial Oncology, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada. Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada. Department of Supportive Care, University Health Network, Toronto, Ontario, Canada. 4 Department of Family Medicine, Toronto East General Hospital, Toronto, Ontario, Canada. 5 Department of Cancer Services Planning and Performance, St. Michael’s Hospital, Toronto, Ontario, Canada. 6 Department of Anesthesia and Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada. 7 School of Kinesiology and Health Sciences, York University, Toronto, Ontario, Canada. 8 Department of Anesthesia, University Health Network, Toronto, Ontario, Canada. 9 Department of Family and Community Medicine, Baycrest Health Sciences, Toronto, Ontario, Canada. 10 Division of Medical Oncology and Hematology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada. 11 Campbell Family Cancer Research Institute, Ontario Cancer Institute, Toronto, Ontario, Canada. Accepted May 5, 2015. 2 3
1
2
units, and empathy has been emphasized as important in this context.5,10–12 In a study of goals-of-care discussions, elements of these discussions that were considered important by seriously ill inpatients and their families were preferences for care in the event of life-threatening illness, values, prognosis, fears or concerns, and questions about goals of care.13 Physician surveys of communication with patients at the end of life have revealed poor knowledge of communication strategies14 and a neglect of social and spiritual issues.15 However, to our knowledge, no previous studies have described qualitatively which specific elements of communication are important for satisfaction with palliative care. This paper was part of a larger qualitative study that sought to understand the key elements of satisfaction with care and quality of care for PCU inpatients, from the point of view of patients, families, and HCPs. Data from this study revealed six discrete themes: interprofessional team; communication; attentive, personalized, competent care; family centered; access and continuity; and supportive setting. Communication was a dominant and complex theme, spanning across all aspects of satisfaction with care except supportive setting, and its five subthemes are the focus of this paper. The remaining themes will be discussed in a separate paper. Methods Study setting and participants
This study took place on four inpatient PCUs in Toronto, Canada, to reflect a diverse sample of palliative HCPs and patients. Approval was granted by the Research Ethics Boards at Baycrest Health Sciences, St. Michael’s Hospital, Toronto East General Hospital, and Princess Margaret Cancer Centre to conduct one-on-one patient interviews and family caregiver interviews, and focus groups of palliative care HCPs at each center between November 2010 and July 2012. Baycrest is an academic geriatric center that includes a 31bed PCU for oncology and nononcology patients. The average stay is 21 days and a minimum age for patient admission is 56 years. Princess Margaret is a large comprehensive cancer center, with a 12-bed oncology PCU with an average stay of 11 days.16 St. Michael’s Hospital is an urban acute care research and teaching hospital, housing a 10-bed PCU for oncology and nononcology patients with an average stay of 17 days. Toronto East General Hospital is a full-service community teaching hospital; its PCU has 16 beds for oncology and nononcology patients, with an average length of stay of 30 days. Eligibility criteria for patients and caregivers included being at least 18 years old; having adequate English communication skills; having been on the PCU for at least 48 hours; and being well enough to conduct an interview. HCPs had a minimum age requirement of 18 years; at least one year of experience working on a PCU; and at least 6 months of experience on the PCU of current employment. Non-PCU HCPs who referred regularly to their institution’s PCU were also deemed eligible, as were volunteers who fulfilled the eligibility criteria. Site investigators and PCU managers/coordinators helped identify eligible patients/caregivers. The research coordinator approached interested patients/caregivers for consent and to arrange an interview. Interested HCPs contacted the research coordinator to arrange focus groups. We used selective sampling to represent a range of disciplines among HCPs, and to strive for a varied age and ethnic background
SECCARECCIA ET AL.
among participants. Informed consent was reviewed and signed prior to partaking in the study, and participants completed a brief demographic questionnaire. Interviews and focus groups
Patients and family caregivers were interviewed separately by research coordinator (NK) or co-investigator (KW). Focus groups were conducted by the research coordinator and a coinvestigator (DS) and/or professional facilitator. Sessions were held in a private, comfortable room and lasted approximately one hour. Interview and focus group guides were semi-structured and used open-ended questions to generate discussion (e.g., ‘‘From your experience what characterizes satisfaction for inpatients on the PCU?’’; ‘‘What does the phrase ‘quality of care’ bring to mind?’’). Follow-up questions were based on ensuing discussions and targeted components of providing quality care to inpatients on a PCU. Participants were encouraged to offer examples from their experience. Interviews and focus groups were audio-recorded. Data analysis
Interview and focus group recordings were transcribed by a professional transcription service and were verified for accuracy. Transcripts were reviewed regularly by the coding team, consisting of the research coordinator (NK) and three study investigators (DS, KW, and CZ). Data analysis was carried out using Strauss and Corbin’s grounded theory method of analysis17 using inductive, constant comparison to identify themes and conceptual categories for each line on transcripts. Interview and focus group guides were amended to reflect emerging themes. Data were coded and the process was repeated to identify further themes, to draw out nuances in the data until saturation was reached and quotes were selected to represent key views. The qualitative computer software package NVivo 818 was used to facilitate the coding process. Results
There were 85 participants: 46 interviewees (23 patient participants [PT] and 23 family-caregiver participants [CG]), and 39 focus group participants (health care providers [HCP]). Two focus groups were conducted at each hospital, with a median of 5 HCP participants (range: 2 to 8). Each focus group was interdisciplinary, with at least two professions per group, including 11 nurses, 5 social workers, 4 physicians, and 4 unit managers. Further details are shown in Table 1. Communication was identified as a cornerstone for patient and family caregiver satisfaction in the focus groups and individual interviews, encompassing five prominent subthemes: 1) building rapport with patients and families; 2) addressing expectations and explaining goals of care; 3) keeping patients and families informed about the patient’s condition; 4) listening actively to patients’ concerns and individual needs; and 5) providing a safe space for conversations about death and dying. Building rapport with patients and families
Building good rapport between staff and patients/ caregivers was considered essential on a PCU where ‘‘interaction is fundamental’’ (PT403) (Box 1). Focus groups revealed that staff often set the tone of relationships with patients by initiating dialogue; participants noted that patients/caregivers were ‘‘thankful for [staff] coming in and sitting and talking to
COMMUNICATION AND QUALITY OF CARE ON PALLIATIVE CARE UNITS
3
Table 1. Demographics Characteristic Age, years Median (years) Range (years) Not answered Sex Female Male Participants per site Baycrest TEGH St Michael’s Hospital Princess Margaret Role on PCU Nurse Social work Physician PC manager Chaplain Occupational therapist Volunteer Othera Primary illnessb Cancer Other Ethnicity European Non-European Not answered
Focus group N = 39 (%)
Patient N = 23 (%)
Caregiver N = 23 (%)
46 27–71 5 (13)
69 42–90 0
61 38–86 0
34 (87) 5 (13)
14 (61) 9 (39)
19 (83) 4 (17)
13 12 8 6
(33) (31) (21) (15)
11 5 4 4 3 3 2 7
(28) (13) (10) (10) (8) (8) (5) (18)
5 7 4 7
(22) (30) (17) (30)
6 8 6 3
(26) (35) (26) (13)
-
-
-
23 (100) 0
18 (78) 5 (22)
26 (67) 8 (20) 5 (13)
21 (91) 2 (9) 0
20 (87) 3 (13) 0
a
Other: respiratory therapist, recreational therapist, physiotherapist, dietician, pharmacist, personal support worker, speech pathologist. Primary illness in the caregiver column refers to the primary illness of the patient for whom they care. There were two instances where patients and caregivers were paired. TEGH, Toronto East General Hospital; PCU, palliative care unit. b
them’’ (HCP30). Patients stated that good rapport with staff provided a sense of belonging and made them feel the care was genuine. Patients perceived good quality care when staff made the effort to learn patient and family members’ names, and they in turn could identify staff by name: ‘‘you get to know them on
a personal level as opposed to just professional, and that helps’’ (PT104). Nonverbal communication—a feeling of ‘‘connection’’ or ‘‘just sitting there being with them’’ (HCP33)—was identified as important to establishing a relationship of mutual trust.
Box 1. Examples of Quotations Regarding Building Rapport ‘‘They’re just warm and friendly and smiling. They just make you feel comfortable.’’ (CG452) ‘‘Kindness and warmth. That just means opening up your mouth and talking and talking with care like you go beyond just being a case number on a file and talking about nursing protocol.. It makes you feel as I say as if you have a sense of belonging. To me, that means just opening up your mouth and becoming a friend.’’ (PT404) ‘‘They’re very nice. They’re always chatty. To me it’s like a big family. That’s what it’s like. It’s nice. It’s homey. They’re very considerate, very much so.’’ (CG150) ‘‘Some things can be as simple as the act of the nurse writing her name on the board, which is a little thing, but it’s a big thing so when the person looks up out of their bed in the morning, they can see who their person is.’’ (HCP2) ‘‘You just share something with them and you get to know something about that person or that family or that mother or father that’s in the bed. A lot of family members really appreciate that because they are alone at that moment.’’ (HCP37) ‘‘The trust develops through the relationships with nursing, with medicine, with physio, OT, spiritual care..It’s about developing those relationships.’’ (HCP4) ‘‘I think it’s a connection.You know there’s a relationship there. She feels comforted, there’s trust.’’ (CG356) ‘‘A nurse that I hadn’t seen before, don’t even know the name of, she just took my hand and just that gesture, it just got to me. I just came to the realization that you know what, you don’t have to do it alone; these people are here, this is their job. They’re here to make you feel better. They’re here to listen to you. They’re here to do whatever they can to make you better. Just that one gesture just blew me away.’’ (PT102) ‘‘As humans, we like that contact. It’s sort of nurturing and shows caring,’’ a lack of which reminds the patient of ‘‘a typically cold, sterile environment.’’ (PT152)
4
SECCARECCIA ET AL.
Box 2. Examples of Quotations Regarding Discussions about Goals of Care ‘‘Initially the caregivers may perceive that there’s a lack of quality of care. Then I think once the nurses and the physicians explain what the goals are and how this will affect their journey they become more satisfied. I think part of that is the education that’s provided to the caregiver.’’ (HCP27) ‘‘They were everyone from dietician to pharmaceutical to everything. I basically had a meeting with every one of them to keep me abreast of what to expect and what they’re going to do if I had any questions or concerns, not to hesitate to call them or anything. They’ve been really, really good that way.’’ (CG455) ‘‘We comfort them with a care plan.’’ (HCP36) ‘‘What their goals are for me, they’ve been upfront.They’re very open with their information, they don’t hold back.’’ (PT105) ‘‘Just getting that information, getting that philosophy of care, explaining it to them early, I found has helped the transition to palliative care.’’ (HCP25) ‘‘Different understandings, different kinds of information that people have been given. Some people haven’t even been told that they’ve been palliative and then they’re wondering why they’re there.’’ (HCP24) ‘‘One patient recently who had a palliative consult and his family said, ‘‘All this time, we’ve had.different specialists come in and give us one piece of the puzzle but the palliative physician put it together and gave us the whole piece and took the time to do that.’’ They were able to make decisions and be at peace with those decisions.’’ (HCP38) ‘‘They do an excellent job with the loved ones and family.explaining.and giving them a briefing.and actually make the patients feel very welcome.’’ (CG450) Addressing expectations and explaining goals of care
Communicating with patients and caregivers about the plan of care was perceived to provide them the opportunity to convey their priorities and for staff to reinforce the goals of care (Box 2): ‘‘explaining what this unit is all about’’ and ‘‘what they’re going to do’’ (CG450). Importantly, a caregiver who felt the plan of care was inadequately communicated noted that this ‘‘seems to me a fairly simple thing to do’’ (CG252). HCPs felt that explaining goals of care to patients and caregivers helped define ‘‘what treatment means’’ (HCP2) congruent with a palliative approach. Similarly, patients and caregivers noted that being given this information made them feel at ease: ‘‘I didn’t even have a question to ask because everything got answered prior to me asking the question. I felt very confident’’ (CG455). Keeping patients and families informed
Patients, caregivers, and staff endorsed the importance of maintaining open communication by updating patients and caregivers with news about the patient’s condition (Box 3). This was perceived to be vital to increasing their sense of connection: ‘‘[PCU doctor] never kept me in the dark with
anything. She’s very explanatory about what my wife is experiencing and what she could be experiencing in the future’’ (CG455). This aspect of communication included explaining procedures before implementing them; discussing the trajectory of illness, changes in medication, and the patient’s eventual decline; and letting the patient know their call was heard and would be answered shortly. As one caregiver expressed: ‘‘They do tell me, ‘It’ll be a few minutes,’ or ‘We’re just finishing here and then we’ll be in.’.It’s comforting to be kept aware of what’s going on to some degree’’ (CG252). In contrast, a lack of information caused uneasiness: ‘‘I think keeping the family updated with what’s going on about the client, that’s a big factor.not knowing makes them more anxious’’ (HCP31). Listening actively
Listening actively, or ‘‘hearing what the patient is saying, not just listening to the words’’ (HCP35) was perceived to be of central importance (Box 4). For staff, this meant reading deeper into what patients and caregivers were saying in order to understand their emotional state. It also included taking time to focus attention on patient/caregiver concerns or simply being available. Patients and caregivers spoke highly
Box 3. Examples of Quotations Regarding Keeping the Patient and Caregiver Informed ‘‘We lose the control on what’s happening with my husband at whichever time because I don’t want somebody just to come and say, ‘We’re doing this, this, this and this,’ without me knowing what’s going on or what the effects are.’’ (CG150) ‘‘Well anyway, just keeping them on medication though, I think that they definitely should have been consulting with the family.’’ (CG253) ‘‘Having someone come and sit down and take their time to explain to the point that they actually understand what’s happening is so important because then they are not objectified.’’ (HCP39) ‘‘As far as that’s concerned, I’ve been kept in the loop and happy about that.’’ (CG353) ‘‘I just hope they realize that discussions or consultations beforehand can do a lot to make it better.’’ (CG456) ‘‘It’s hard for people to cope if they don’t know what’s happening and they don’t understand.’’ (PT300) ‘‘We hear it all the time. That ‘actually I didn’t know what was going on with me,’ or just to put it in layman’s terms that this is what’s happening.’’ (HCP28)
COMMUNICATION AND QUALITY OF CARE ON PALLIATIVE CARE UNITS
5
Box 4. Examples of Quotations Regarding Listening Actively ‘‘Sometimes it’s just about listening and validating what they’re feeling and recognizing it and then moving forward and offering support.’’ (HCP29) ‘‘They listen. They listen to their patients. They look at them. They look for.they have to get to know people a little bit,’’ (CG252) ‘‘I found at St. Mike’s they were really good at, sort of, reading it and listening actively and hearing what her concerns were and talking to her so that she was understood. Her fears were certainly heard but they talked to her to try and ease the situation.’’ (CG456) ‘‘You know they are focusing where you have the pain or you have other stuff or things or personal things to talk about. You know that they’re not just saying ‘how are you doing?’ They are there and they listen to you.’’ (PT302) ‘‘Complaints I think would stem from situations where patients or families feel their autonomy has been compromised.They haven’t been heard. I think it generally comes from that.’’ (HCP1) ‘‘Again it comes back to listening to what they need to do and I think if they feel that they’re listened to then you get the patient satisfaction and they feel like there’s better quality of life.’’ (HCP26) ‘‘She’s had to deal with a lot. Hence the reason why a little more listening and tuning in goes a long way.’’ (CG456) ‘‘It is very much linked, the feeling that they’re being listened to and we’re doing what they’ve requested or at least trying our very hardest to meet those needs.When we focus on their wishes and their needs and being there to listen to their family and the patient we do get that response.saying how happy they were with the treatment that they received.’’ (HCP18)
of staff who ‘‘take the time to talk to you and find out about you’’ (PT101). Participants also remarked that listening attentively without necessarily having answers was sometimes enough: ‘‘I find that it’s great that [volunteers] listen to me. They don’t give me any advice, but they do listen to me.and that helps me sort out my own life’’ (PT401). Active listening also provided staff insight into patients as individuals, helping them identify specific needs. Indeed, it was perceived to underpin the patient’s plan of care: ‘‘When you have the time for the person to be really heard, then for the team to come together and share those ideas and then formulate a plan.it’s pretty brilliant when it comes together’’ (HCP2). A safe space for conversations about death and dying
Unlike the previous four subthemes, where there was consistency of content across all participants, there was variation in the extent to which death and dying was discussed and in the opinions about this subject (Box 5). Six staff focus groups discussed this topic ardently, whereas two focus groups did not discuss it very much. Patients and caregivers
infrequently brought up the topic of death and dying in their discussions about satisfaction with care. In the instances when this topic was raised, there were differing opinions regarding how this topic influenced satisfaction with care. The majority of HCPs who engaged in discussions about this topic passionately emphasized the importance of discussing death and dying with patients and families, and informing them of what to expect when a patient declines. Palliative care staff stated that such discussions promoted a safe environment for patients to talk about fears associated with death, and that ‘‘this is something you develop working with this population.the art of talking to dying patients’’ (HCP8). Focus groups stated that witnessing patients’ and caregivers’ emotions and offering counsel when appropriate, including on issues such as grief and death, was a ‘‘basic principal of what any good PCU should be able to do’’ (HCP7). Interview comments were mainly by caregivers, who were divided in their opinions about whether or not staff should be direct with patients about their decline. Some caregivers expressed appreciation for the candor: ‘‘They give it to you as it is, which is good. I don’t think people should be left in the dark’’ (CG454), whereas other caregivers did not want this
Box 5. Examples of Quotations Regarding Discussions of Death and Dying ‘‘Sometimes you prepare people way in advance, because people have questions like what’s going to happen to me. What’s the end going to look like? A lot of people think it’s some horrific cataclysmic experience and it’s not.’’ (HCP28) ‘‘They came to tell him that this is the end of his life and they don’t know when he’s going to go.and he accepted it, which is amazing because he never wanted to accept the fact that he was dying.’’ (CG250) ‘‘You don’t shun away from the word dying. You use the D-word. I think that as soon as you do, you give people the permission to talk about it as well. Or they give themselves the permission to talk about it. It’s often like the elephant in the room. Calling it for what it is is often a profound moment and an opportunity for a lot of release.’’ (HCP33) ‘‘You want a lot of honesty from them. It must be honest.’’ (CG357) ‘‘I told them that if they know how long I have, I don’t want to know. I really don’t. I don’t want to hear nothing about nothing.’’ (PT301) ‘‘That could be issues with fear, fear around death, and what’s that going to look like for their loved one. Are they going to suffer? Even if they’re peaceful and sleeping in bed and they’re fine, they are often concerned that their loved one’s suffering.’’ (HCP24)
6
subject discussed with the patient: ‘‘I don’t think it’s proper for doctors or nurses to be straightforward with patients. I don’t find it right’’ (CG351). Few study patients remarked on discussions about death and dying, but in those instances comments were negative: ‘‘It bothers you the fact that you have a limited time’’ (PT201). However, staff members discussed examples of patients’ anxiety that seemed to stem from not talking about their fears of death and dying, which was alleviated when they presented them with the opportunity for discussion. Overall, there was tension in this subtheme about whether or not to be forthright with patients about death and dying, and how this influenced satisfaction with care. Discussion
In this qualitative study, communication emerged as an important and overarching aspect of quality of care for palliative care inpatients, caregivers, and staff. This is in keeping with its standing as one of the core tenets of palliative care.19,20 Five important subthemes were identified, which together provide a framework for high-quality communication with patients and their families, particularly in the PCU setting. Building rapport was emphasized as a key approach to supporting family members whose loved ones are dying in intensive care units,21 acute ambulatory care settings,22 and inpatient oncology units.23 In our study, building rapport laid the foundation to facilitate communication of the other themes; participants felt that this rapport exceeded that of typical relationships in nonpalliative settings such as acute care units, and allowed patients and their families to develop trust in the staff. This finding is in keeping with other research suggesting that there may be greater satisfaction with communication in palliative care settings such as PCUs and hospices.11,24 Addressing expectations and explaining goals of care were essential for patients and families, especially for those struggling with a patient’s prognosis. Failure to establish a mutual understanding can lead to misaligned expectations, distress, unmet needs, and a perceived low quality of care.11,15 Ensuring that conversations about goals of care were initiated soon after admission, and including families in this process, served to clarify understanding of the illness, educate about available services, and set realistic expectations. Solidifying the care plan made staff aware of patients’ and families’ level of understanding and allowed them the opportunity to align their expectations with the care that would be provided. Our study also demonstrated that keeping patients and family members informed about daily care provides them with a sense of control, of having respect from staff, and of being part of the care team. Staff noted that patients and caregivers relaxed in response to information about routine care, and felt that it improved their overall relationships with them. These findings are in keeping with previous work demonstrating that honest, consistent, clear provision of information from physicians and nurses improves satisfaction with care of seriously ill patients and their families in inpatient, outpatient, and home care programs.4 In a study on an intensive care unit, instances where nurses were perceived as caring, providing information honestly, and supporting decision making, assisted families to cope and have confidence in the care provided.21 The study findings confirm that the sense of being heard enables other aspects of communication,20 particularly with respect to establishing trusting relationships with physi-
SECCARECCIA ET AL.
cians25 and nurses.26 Similar to ‘‘building rapport,’’ there is an emotional component to the subtheme ‘‘active listening,’’ in that it is instrumental to patients’ perception of HCPs as empathic,14,26 allowing them to feel consoled and achieve acceptance.26 Active listening reduces patient anxiety26 and has demonstrated positive psychotherapeutic outcomes.27 It also helps staff understand how much patients and families grasp of what is occurring, allowing a better understanding of their emotional states so that staff may offer appropriate support.10 Perhaps most importantly, it shows patients and family members that HCPs regard them as individuals.25 The subtheme of a safe space for conversations about death and dying provided a unique and important contribution regarding end-of-life communication. Although this topic was discussed ardently in most of the focus groups, it was brought up less often in caregiver interviews, and even more rarely in those with patients. Among the caregivers who mentioned this topic, some felt discussions about dying should be candid and others spoke strongly against discussing death with the patient, arguing it would burden them with negativity. In other studies involving patients, families, and HCPs, the majority of participants felt that the willingness of health care workers to talk about death and dying was important.5,28 In our study, staff who discussed this topic felt that discussing dying with patients could help prepare them and their families for the patients’ decline, consequently relieving emotional suffering at the time of patient death. Although this approach is endorsed in the literature,7,29,30 clinicians should attend to their own biases as well as patients’ and families’ cues and wishes regarding the content, style, and timing of information31,32 and be attuned to the range of desire for disclosure concerning this topic.25 This study had limitations. The study was conducted in PCUs, possibly limiting its application to other settings; however, the tenets of communication it describes are broadly relevant. Interviews were limited to English speakers, which might have restricted the cultural variability in the interview content, although primary caregivers of non-English-speaking patients were included. Despite efforts to recruit a varied sample, there were relatively more nurses, women, and patients with cancer, reflecting the demographics of the populations that were being recruited, and their willingness to participate. Interviews with inpatients averaged 30 minutes instead of the intended one hour due to patient fatigue. Communication is a crucial element of quality care on PCUs. The five subthemes that emerged from the data deepen our understanding of this core skill for HCPs, and may serve as a structure for education and quality improvement tools in palliative care inpatient settings. Comparative research is necessary to determine the relative importance of these subthemes in other settings. Based on these subthemes, as well as the other themes identified in this research, we are developing and validating a questionnaire to assess patient and family satisfaction on PCUs. Acknowledgments
This study was funded by the Bluma Appel Palliative Care Research Fund and the Ontario Ministry of Health and Long Term Care. Dr. Zimmermann is supported by the Rose Family Chair in Supportive Care, Faculty of Medicine, University of Toronto. The views expressed do not necessarily reflect those of the funding agencies, which also had no role
COMMUNICATION AND QUALITY OF CARE ON PALLIATIVE CARE UNITS
in the study design, data collection, analysis and interpretation, writing, or decision to submit for publication. Dr. Kirsten Wentlandt is supported by a Department of Family and Community Medicine Investigator Award. Author Disclosure Statement
No competing financial interests exist. References
1. Leavitt M: Medscape’s response to the Institute of Medicine Report: Crossing the quality chasm: A new health system for the 21st century. MedGenMed 2001;3:2. 2. Kamal AH, Hanson LC, Casarett DJ, et al.: The quality imperative for palliative care. J Pain Symptom Manage 2015;49:243–253. 3. Dy SM, Shugarman LR, Lorenz KA, et al.: A systematic review of satisfaction with care at the end of life. J Am Geriatr Soc 2008;56:124–129. 4. Heyland DK, Cook DJ, Rocker GM, et al.: Defining priorities for improving end-of-life care in Canada. CMAJ 2010;182:E747–E752. 5. Curtis JR, Wenrich MD, Carline JD, et al.: Understanding physicians’ skills at providing end-of-life care perspectives of patients, families, and health care workers. J Gen Intern Med 2001;16:41–49. 6. Vedel I, Ghadi V, Lapointe L, et al.: Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: A qualitative study. Palliat Med 2014;28:1128–1138. 7. Steinhauser KE, Clipp EC, McNeilly M, et al.: In search of a good death: Observations of patients, families, and providers. Ann Intern Med 2000;132:825–832. 8. Buckman R: Communication skills in palliative care: A practical guide. Neurol Clin 2001;19:989–1004. 9. Back AL, Anderson WG, Bunch L, et al.: Communication about cancer near the end of life. Cancer 2008;113(7 Suppl): 1897–1910. 10. Kelley KJ, Kelley MF: Teaching empathy and other compassion-based communication skills. J Nurses Prof Dev 2013;29:321–324. 11. Gallagher R, Krawczyk M: Family members’ perceptions of end-of-life care across diverse locations of care. BMC Palliat Care 2013;12:25. 12. Patrick DL, Curtis JR, Engelberg RA, et al.: Measuring and improving the quality of dying and death. Ann Intern Med 2003;139(5 Pt 2):410–415. 13. You JJ, Dodek P, Lamontagne F, et al.: What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. CMAJ 2014; 186:E679–E687. 14. Trovo de Araujo MM, da Silva MJ: [Communication strategies used by health care professionals in providing palliative care to patients]. Rev Esc Enferm USP 2012;46:626–632. 15. Evans N, Costantini M, Pasman HR, et al.: End-of-life communication: A retrospective survey of representative general practitioner networks in four countries. J Pain Symptom Manage 2014;47:604–619. 16. Bryson J, Coe G, Swami N, et al.: Administrative outcomes five years after opening an acute palliative care unit at a comprehensive cancer center. J Palliat Med 2010;13:559–565. 17. Strauss A, Corbin JM: Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Thousand Oaks, CA: Sage Publications; 1990.
7
18. NVivo qualitative data analysis software. Version 8. QRS International Pty Ltd.; 2008. 19. Bruera E, Neumann CM, Mazzocato C,et al.: Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients. Palliat Med 2000; 14:287–298. 20. Zachariae R, Pedersen CG, Jensen AB, et al.: Association of perceived physician communication style with patient satisfaction, distress, cancer-related self-efficacy, and perceived control over the disease. Br J Cancer 2003;88: 658–665. 21. Adams JA, Anderson RA, Docherty SL, Tulsky JA, Steinhauser KE, Bailey DE, Jr. Nursing strategies to support family members of ICU patients at high risk of dying. Heart Lung 2014;43:406–415. 22. Dean M, Oetzel J, Sklar D: Communication in acute ambulatory care. Acad Med 2014;89:1617–1622. 23. Tay LH, Hegney D, Ang E: Factors affecting effective communication between registered nurses and adult cancer patients in an inpatient setting: A systematic review. Int J Evid Based Healthc 2011;9:151–164. 24. Enguidanos S, Housen P, Penido M, et al.: Family members’ perceptions of inpatient palliative care consult services: A qualitative study. Palliat Med 2014;28:42–48. 25. Murray CD, McDonald C, Atkin H: The communication experience of patients with palliative care needs: A systematic review and metasynthesis of qualitative findings. Palliat Support Care 2015;13:369–383. 26. Langegard U, Ahlberg K: Consolation in conjunction with incurable cancer. Oncol Nurs Forum 2009;36:E99–E106. 27. Elliott R, Bohart AC, Watson JC, Greenberg LS: Empathy. Psychotherapy (Chic) 2011;48:43–49. 28. Steinhauser KE, Christakis NA, Clipp EC, et al.: Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284: 2476–2482. 29. Buecken R, Galushko M, Golla H, et al.: Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues? Patient Educ Couns 2012;88:318–324. 30. Slort W, Blankenstein AH, Deliens L, van der Horst HE: Facilitators and barriers for GP-patient communication in palliative care: A qualitative study among GPs, patients, and end-of-life consultants. Br J Gen Pract 2011;61:167–172. 31. Parker SM, Clayton JM, Hancock K, et al.: A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/ caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 2007;34:81–93. 32. Zimmermann C: Denial of impending death: A discourse analysis of the palliative care literature. Soc Sci Med 2004 Oct;59:1769–1780.
Address correspondence to: Camilla Zimmermann, MD, PhD Palliative Care Program Department of Supportive Care Princess Margaret Hospital 610 University Avenue, 16-712 Toronto, Ontario, Canada M5G 2M9 E-mail: [email protected]
