Improving quality in hospital end-of-life care: honest communication, compassion and empathy

Developing the education modules

From inception, quality, consultation and industry partnership were paramount. A National Advisory Group (NAG) included the project coleads, ACSQHC delegates and key stakeholders representing health professionals. The modules were developed by a palliative care educator with the support of a peer review group (invited by the NAG) and were multidisciplinary hospital clinicians from across Australia. Following this, 35 doctors, nurses and AHPs piloted the modules. In order to elicit the changes to their own practice that acute hospital HCPs recognise from education derived from the ACSQHC Consensus Guidelines, a question was incorporated into routine evaluation, where learners voluntarily answered, in free text, the following question: Tomorrow, the one thing I can change to more appropriately provide end-of-life care is…

Patient and public involvement

Patients or families were not included in this process, having been involved in development of the Consensus Statement from which the education is derived.

Data collection and analysis

Data have been included from any health professional (self-selected) who completed one or more of the six modules from 1 November 2016 (following the final module release) to 28 September 2017 (the date of the data extraction). A total of 5181 individuals registered for the project during the time period. Data were extracted and deidentified by an administration officer. Data were analysed and a coding scheme was developed independently by a research assistant with no prior knowledge of module content. This was reviewed by the broader team who consolidated the coding scheme and examined emerging patterns. Internal homogeneity and external heterogeneity were established by verifying the meaningfulness and accuracy of the placement of data in the various codes.15 Analytical categories were derived inductively from the data, and the data were read and read again to recognise and code themes and subthemes.16 NVivo V.11 was used to assist with the sorting, organisation, reorganisation and storage of data, and thematic analysis informed our data analysis.17 Themes were systematically and coherently compared to identify as many nuances as possible.18

Communication

This theme included a variety of ways respondents intended to change their clinical communication. Many detailed that they would aim to be more open to questions from patients, families or even their teams—effectively wanting to change their willingness to broach, and respond to, end-of-life issues. A subtheme curbing own avoidance to end-of-life issues in conversations with patients was stated as key to providing appropriate care, even being able to say the word ‘dying’ in conversations was reported as more appropriate. The subtheme of end-of-life discussions holds statements of respondents who aimed at being open, honest and providing full information and advocating on behalf of patients and families as steps that could normalise dying in hospitals. Listening effectively was another subtheme where respondents acknowledged that listening is a powerful part of communication and end-of-life care—hearing and listening to what the patient wants and wishes is key. However, it was identified that such willingness and open communication also posed potential associated risks. While stressing the importance and positive impact (for patients’ care and families’ bereavement) of being able to communicate end-of-life issues, respondents also described the perceived side effects of the emotional nature and labour of such communications. Discussing dying and death in hospitals is essential but can trigger emotional responses in staff and conflict in clinical teams or even with families. Respondents stated clearly that these risks can be mitigated by being prepared, skilled and equipped for conflict and high emotion. Non-verbal communication, another subtheme, captures techniques that could improve practice. Sitting, appropriate touch, a smile or even an attentive look or body posture were mentioned as areas where they could change practice and strengthen end-of-life care.

Virtues and emotional insight

Virtues and emotional insight were a theme used to group and capture the respondents’ considerable descriptions of thoughts, feelings, empathic approaches and moral awareness. This included intent to alter or heighten self-awareness and reflect on thoughts and feelings while thoughtfully responding to families, patients, friends and staff on end-of-life issues. Awareness of own emotions was another subtheme capturing capabilities of being reflective and thoughtful about what could be said, and the impact of words included in conversations. Also, being extra aware of others’ emotional state, another subtheme, was an additional implementation skill. Respondents mentioned being brave—as listening to and being aware of another person’s sorrow, anxiety and ‘being there’ in the face of their suffering requires a strength in or braveness of professional character.

Compassion is a subtheme that included responses regarding the ability to be open to the suffering of others in the face of one’s own fear while providing care to alleviate suffering. Also mentioned was ‘not avoiding’ discussion on dying, showing compassion by answering questions honestly and objectively. In order to relieve suffering, the respondent told us they could be brave and compassionate in their ‘feelings, skills, thoughts and words.’

Another subtheme was being aware of the concerns, fears, emotions and feelings of thepatient. The business of providing care and service in a hectic acute care hospital can mean that conversations and identification of needs can be kept at a ‘surface’ level. However, the respondents stated that a commitment to a deeper level of understanding of the dying patient’s needs, fears and feelings could be translated to their practice to improve the quality and safety of their practice. Not being afraid, as practitioners or clinicians, to use the words ‘dying’ or ‘death’ in conversations, acknowledging patient’s concerns and being in tune with the patient with a heightened sense of mortality were all translatable capacities that were stated by respondents. Increasing one’s empathy, another subtheme, was specifically mentioned by respondents as an area of practice improvement. Being able to embrace the patient’s experience or walking in other person’s footsteps was important. Such a heightened awareness can raise challenges even for the most experienced clinicians and this was captured in the subtheme controlling my own emotions. Translatable skills and the capacity to ‘step back’ reflect and attending to self-care and one’s own emotional state were offered by respondents as strengthening practice change points.

Dignity, valuing and respecting the patient for his or her own sake, was another subtheme where respondents specified they could change their practice. Being able to honour the personhood of the individual patient and their specific needs was a dignified approach to end-of-life care that could strengthen in professional practice. While no respondent admitted to being dishonest, honesty was mentioned as an area of practice change. Trying not to avoid using the word ‘dying’ was yet again mentioned by respondents. Also, respondents stated that answering questions and responding directly was a strengthening practice in quality end-of-life care—questions that arise in clinical end-of-life practice are commonly about the future (what will happen to me?), rather than skirting and dodging the question acknowledging it with a respectful and honest response is required.

Professional mindset

This theme included a variety of ways respondents intended to change their professional mindset. A subtheme was confidence in professional practice which held descriptions of intentions not to be scared or frightened, to be brave and truthful. The respondents stated that their approach to care could be altered to enhance these virtues which underlay quality end-of-life care. Such virtues that underpin quality care are held together by professional self-care and respondents described the importance of self-care, another subtheme. Proactive investment in self and energising practices were descriptors provided by respondents on how they could invest in their own capacity. Another subtheme was open-mindedness; respondents specified that they could alter practice by not being judgemental of various cultural and religious beliefs and respecting the viewpoints of others are ways that could improve practice. Upskilling was another subtheme developed to capture respondent’s descriptions of working towards excellence and developing practice over time. To learn, to develop and to educate others were all included in this subtheme. Also important is to recognise the qualities and capacity already held in clinicians—the respondents wrote it is important to pat yourself on the back while also aiming high for clinical practice improvement.

Person-centred care

This theme included a variety of ways respondents intended to strengthen their capacity to deliver person-centred care. Understanding the goals, needs and expectations of thepatient was a subtheme where intentions were collected about allowing patients to be heard, to be in tune to the patient’s needs and their wishes for the future. Goals of care are for and designed by the patient, not the healthcare teams. Being able to respect thepatient, their family and wishes is a subtheme that included a variety of ways respondents intended to improve their practice by empowering and respecting patients’ choices. Even if patients’ wishes are different from an individual clinician’s quality end-of-life care it embraces respect and upholds patient autonomy. Being able to separate thepatientfrom the illness was another subtheme based on respondents’ replies regarding the ways to acknowledge the person, not the illness or disease, an enabler of person-centred care. Supporting thepatientand the family members is a subtheme that collected the respondent’s descriptions of the various ways support can be offered at the end of life. This included providing symptom control, referral for spiritual or pastoral care, a listening ear and being a mediator when miscommunication happens. Taking time to be with thepatient was another subtheme based on the respondents’ replies, where allowing and giving time was mentioned as an area, they could change to deliver quality end-of-life care. Taking time to listen, to leave ‘to-do lists’ and just ‘be’ were mentioned as strengthening along with not offering quick reassurances to end-of-life issues. Allowing time just for silence was also offered as an area to improve appropriate quality of practice.

Professional practice

Professional practice was a theme developed to capture the specialised qualities of practice needed to deliver end-of-life care. Advocacy of thepatient was a subtheme where respondents wrote the importance of actively supporting the patient in team meetings or other fora where patient’s preferences and wishes are being overtaken by bureaucratic or organisational and professional preferences. Advocacy of the patient also included ensuring other HCPs can see the patient’s point of view. Acting quickly is a subtheme that includes the realisation that end-of-life care can be urgent care, where occurrences of suffering or uncontrolled symptoms means that escalation to other teams in the hospital can alleviate ongoing distress and offer appropriate treatments. Being able to question colleagues or hospital standard operating systems is another area where practice can be altered to improve care, and these subthemes were collected in asking questions. Understanding illness trajectories and not missing opportunities to broach and discuss the patients’ future care plans is a subtheme called identify end-of-life triggers. Telling the truth with kindness, as one respondent stated, can happen at opportune times that allows quality patient-centred care at the appropriate time. Respondents also wrote about not missing an opportunity to offer to discuss end-of-life issues with patients and triggers are key to this end.

Includingpatientsand families in thehealthcareteam is another subtheme where intentions to alter practice for the better were collected. Feeling like you are not alone and recognising and using a team where decisions and goals can be made respectfully have the potential from respondent’s perspective to alter practice for the better. Effective leadership was a subtheme used to collect the practice change intentions of respondents. Clear goals, clear roles, trust, respect and a cultural readiness to allow patients to steer care were all mentioned as practice change points that could be instigated.

Qualitative comments by theme are detailed in table 1.

Communication

Communication is reported throughout and has been cited in the literature as a main factor that can influence and help improve end-of-life care in hospitals3 so its importance cannot be underestimated. Aspects of communication were highlighted by respondents; however, having open and honest conversations is something that many HCPs either struggle with22 or are unaware that this is wanted or required. End-of-life communication was raised as a barrier in a study with 533 Malaysian hospital nurses including the difficulties inherent in discussions with patients and families,21 evidenced in our study via a subtheme of ‘curb my own avoidance’.

Emotional insight

Emotional insight, which is missing from the Consensus Statement elements, was an important emerging theme, including discussions of prerequisites that enable safe and quality care to flow. The professional and, arguably, human virtues that respondents say are important when working in large bureaucracies include compassion, empathy and honesty, which are inherent in end-of-life care.23 HCPs in generalist areas are often unfamiliar with the importance of acknowledging the often strong emotions of others (staff, patients, families), and can more easily struggle with their own emotions, becoming susceptible to burnout.24 For example, it was insightful that some respondents were concerned that their own emotions would impact or over-ride that of the patients in emotional situations.25

Professional mindset

Expected deaths will continue to occur in hospitals and it is important that HCPs providing care strengthen their knowledge, confidence, open-mindedness and skills to provide best practice end-of-life care.3 The term ‘silent witnesses to care’, although in relation to student nurses in Canada facing difficult end-of-life situations where they feel unprepared and powerless to effectively engage with patients and families,26 arguably applies to many HCPs.

Person-centred care

Person-centred care sees HCPs acknowledging the patient as a partner in care planning and decision-making.27 In our study, respondents recognised the need to respect the wishes of patients and families, to support them and to take time to be with them. Sharma and colleagues28 indicate the need to get to know the person which has come across in our study as the need to separate the person from the illness. With an emphasis on patient-centred approaches to care, advocacy roles can be more easily facilitated as patients’ wishes and views are known,27 and this came across in respondents’ intentions.

Professional practice

Interestingly, teamwork and the need to include patients/family as part of this was highlighted, tying back again into person-centred care, which in turn is seen as integral to collaborative end-of-life care.29 Acute care clinicians can recognise dying, although this does tend to be at a late stage,11 so unsurprisingly this is conveyed in the results as the need for ‘triggers’, ‘trajectories’ and ‘tools and resources’ to help with this.