Introduction
Advance care planning (ACP) provides individuals with the opportunity to plan their future care while they have the capacity to do so (National Institute for Health and Care Excellence 2019). Within the field of hemato-oncology, ACP is frequently overlooked (Dowling et al. Reference Dowling, Fahy and Houghton2020). A review of existing literature highlighted a pattern of emerging themes including a focus on cure even when the likelihood of cure is low, difficulties in prognostication due to uncertainty of hemato-oncology diseases and therefore difficulty in identifying the dying stage, and appropriate timing of discussions. Patients with haematological malignancies may not be referred to palliative care at the appropriate times (Dowling et al. Reference Dowling, Fahy and Houghton2020). Consequently, the implementation of ACP, which may lead to patients giving consideration to future treatment, preferences for place of care, and death thus allowing a degree of control over their future care, may not occur. As such, the barriers and facilitators to implementing ACP need consideration.
Definitions of ACP vary throughout the literature. Toguri et al. (Reference Toguri, Grant-Nunn and Urquhart2020) refer to ACP as a process whereby patients reflect on goals, values, and beliefs in order to allow them to make decisions about their future treatment. Sudore et al. (Reference Sudore, Lum and You2017) view ACP more holistically, as a process that supports adults with personal values, goals, and preferences. Irrespective of the varied definitions of ACP, it can help to ensure delivery of high-quality patient-centered care by ensuring patients are aware of what their options are at the end of life (Chandar et al. Reference Chandar, Brockstein and Zunamon2017). One important point for consideration is, when is the right time for ACP within hemato-oncology?
Despite the many studies of palliative care in hemato-oncology, little insight into the perceptions or decision-making processes of the clinical team is explored (Moreno-Alonso et al. Reference Moreno-Alonso, Porta-Sales and Monforte-Royo2018). As the key instigators of ACP, it is important to understand perceptions and processes as both may contribute to a lack of ACP in practice. A failure to deliver care that reflects needs, preferences, and values of patients remains a shortcoming in practice. Prognostic difficulties often mean a short period between potentially curative treatment and death (Moreno-Alonso et al. Reference Moreno-Alonso, Porta-Sales and Monforte-Royo2018). Equally, the way in which these patients are managed toward the end of their life is vastly different in comparison to patients with solid malignancies (LeBlanc Reference LeBlanc2017). Should the unpredictable course of a hematology malignancy be a significant factor in the implementation of ACP, or are clinical staff in hemato-oncology not considering ACP early enough? This study seeks to understand the perceptions of clinical staff, seeking to identify barriers and facilitators to ACP and contributory factors which may impact on the implementation of ACP at a local level, focusing on a large tertiary unit where hemato-oncology patients are managed.
Methods
This was a single-center qualitative study based in a regional comprehensive care hemato-oncology service in northern UK. Participants consisted of medical consultants, resident doctors, specialty doctors, clinical nurse specialists, and physician associates. Purposive recruitment was used to include staff who encounter patients at all stages of their condition from diagnosis to treatment and cure or death; relationships were longitudinal. Participant recruitment included study information emails containing the developed questionnaire sent directly via the local hematology center. Participation was voluntary.
A questionnaire consisting of 7 questions was developed with the aim of assessing clinical practitioners’ understanding of what ACP entailed, triggers for implementation, barriers and facilitators to ACP which they had encountered in practice, along with their understanding of any support available to aid in implementing ACP (Figure 1).
Figure 1. Survey questions.
The questionnaire was designed electronically using an online survey tool and distributed by electronic mail with a participant information sheet and consent form, anonymized with role as the only identifier. This was sent to 39 staff – 12 consultants, 15 resident and specialty doctors, 9 clinical nurse specialists, and 3 physician associates. A reminder was sent after 1 week, a final reminder after 2 months. The results were compiled using analysis software (SurveyMonkey) available via the original online survey tool used to disseminate the questionnaire.
Data were analyzed using thematic analysis, a qualitative analytic method appropriate to an exploratory project (Braun and Clarke Reference Braun and Clarke2006). Following familiarization with the data, coding was the next stage in the process, with initial codes generated before identifying themes (Medelyan Reference Medelyan2020). A coding frame was developed, allowing the development of categories and subcategories, leading to the identification of themes and subthemes, as indicated in the thematic analysis map (Figure 2). Coding initially occurred via identifying repetitive terms, which were then grouped together in terms of relevance. Inductive coding was more appropriate than deductive, as the purpose of this project was to explore ACP from the perspectives of those staff involved in ACP, as such it was appropriate for codes to arise directly from the responses received (Medelyan Reference Medelyan2020).
Figure 2. Thematic analysis map.
Results
Questionnaire completion
In the first round of approaches, 24 of 39 (61.5%) invitees responded, with a further 2 responding to the 2 prompts. In total, 26 of 39 (67%) responses were received (Figure 3). The highest response rate was from the consultant body (38.46% of all responses). Overall, 88.5% of respondents gave an explanation of their understanding of ACP. 3.8% felt they had no understanding and 7.7% felt their understanding was limited. Answers were predominantly clinically focused, with only 1 person referring to non-clinical aspects. 46% of respondents referred to end-of-life care, death and dying, or preferred place of death within their response. This was the most frequently mentioned terminology, followed by respondents describing ACP as including discussions around extent of treatment, escalation of care, and use of specific interventions which appeared in 38% of responses. Involving patients was highlighted in 27% of responses, and involving family was mentioned in 7.7%. Resuscitation discussions were given in the answers of 23% respondents. Discussions around the preferred place of care were mentioned in 15% of responses. 19% referred to making decisions around who would be involved if the patient were to lose mental capacity. Four respondents referred to when they felt would be the appropriate time to initiate ACP either in a specific time frame or in relation to diagnosis/treatment/prognosis.
Figure 3. Chart identifying roles of respondents.
35% of participants had formal training in initiating ACP. 15% of participants had worked in palliative care. 92% felt discussions around ACP were part of their role. The 2 practitioners who did not feel ACP was part of their role were resident doctors. The main factor in relation to initiating ACP was patient willingness to discuss with 42% of respondents, the most frequently mentioned factor in responses. Family involvement was an influencing factor for 23% of respondents. Many responses centered around treatment: 31% of respondents stated that treatment influenced their decision to initiate ACP, including references to active treatment, side effects, limited treatment options, and disease recurrence/progression, with 2 respondents mentioning a shift in treatment focus from curative to palliative. The risks associated with treatment were highlighted by just 1 respondent, as was the aim of treatment specifically, although it could be argued that this could potentially be placed with the focus shifting from curative to palliative. In keeping with this, 27% of responses mentioned prognosis: 2 responses gave time frames with 1 respondent stating they would initiate ACP if they felt the patient was in the last 1 year of life and 1 respondent stating they would initiate if the prognosis were 6 months or less.
15% of respondents mentioned patient comprehension factors influencing decisions to initiate ACP, including patient mental capacity, patient level of understanding, and language barriers. The question of timing also arose with 27% of respondents referring to timing and when they felt would be the appropriate time to initiate, while 1 respondent raised a concern that it was difficult to know when the most appropriate timing is. Other factors mentioned by only 1 respondent included availability of resources, availability of time, patient expectations, and complexity of patients’ lives.
Barriers to implementation
88.5% of respondents highlighted areas which restricted ACP planning, while facilitators were only described by 38.5%. Two responses were unclear as to whether they were being presented as barriers or facilitators. The most frequently highlighted barrier to ACP was that of time (31% of respondents) including lack of time to discuss, with 1 respondent mentioning that they would often forget to discuss ACP due to “a need to address other things in a short time frame.” 8% of respondents listed time as a facilitator, adding that spending more time with patients influenced ACP discussions. One respondent listed time but did not give clarity as to whether it was a barrier or facilitator.
Patient acceptance/reluctance to discuss was listed by 27% respondents as a barrier. Issues listed here in terms of barriers included patient expectations, patients not seeing a benefit to discussions, and patients feeling it is specifically for palliative care. Reluctance of family to discuss ACP was raised by 11% of respondents and 8% raised family willing to discuss as a facilitator. A total of 23% felt the reluctance of medical staff to discuss ACP was a barrier with points raised including not knowing the patient well enough, senior staff influence, not wanting to give up, concern over causing distress and damaging rapport. One respondent listed a difference of opinion/understanding between the patient, family, and practitioners as a barrier.
The patient’s point on the disease trajectory was presented as a barrier by 23% with respondents citing issues including the stage of the patient’s disease, difficulty raising the topic if the patient is on active treatment or responding to treatment, and not wanting to put a “negative spin” on things. Disease stage was raised as a facilitator by 1 respondent, who highlighted that recognizing a guarded prognosis can facilitate ACP. Another single respondent stated that disease-related admission can help to facilitate ACP. Timing of discussions was raised as a barrier by 19% of respondents, with issues being raised such as too much to discuss at new diagnosis, the difficulty in knowing the trajectory of a terminal diagnosis, challenging to talk about death and dying when starting a new treatment, and discussions being left too late.
Education-related barriers, including lack of experience/exposure/training, lack of knowledge of ACP, and lack of awareness of support available, were highlighted as a barrier by 27% of respondents, with having a good understanding of ACP highlighted as a facilitator by 1 respondent. A multidisciplinary team approach was highlighted as a facilitator by 12% of respondents and a barrier when not done effectively by 8% of respondents.
Communication was raised in various ways, with 23% of respondents believing it to be a facilitator of ACP. Specific points mentioned included having discussions a little at a time over several sessions, prompting the patient, and providing written information. Two respondents raised poor communication as a barrier, including staff “not being honest enough with patients” and “no warning shots being fired.” 15% of respondents felt that telephone reviews were not conducive to ACP, and a further 15% highlighted family not being present as a barrier to ACP. This overlaps with environmental factors. The appropriate setting was raised as a barrier by 1 respondent and a facilitator by 2 respondents. Other factors mentioned by only 1 respondent included the financial circumstances of the patient as a facilitator, and the age of the patient, which was raised by 1 respondent as both a barrier and a facilitator.
In terms of an awareness of sources of support available, 62% of respondents felt they had some knowledge of what support was available, 35% indicated that they had no understanding of support services available, and the remaining 3% were unclear in their responses. Of those who were aware of other sources of support, as outlined in Figure 4, the predominantly mentioned source was the specialist palliative care team (35%).
Figure 4. Sources of support for advance care planning identified by respondents.
Discussion
The purpose of this study was to view ACP from the perspective of clinical practitioners involved in the continuous care and management of patients within hemato-oncology. It is intended to give insight into the understanding of ACP, support services available, and perceived barriers and facilitators to ACP. The intention was to evaluate these data alongside existing literature, identify themes, and establish how ACP within hemato-oncology may be improved. Numerous themes and subthemes emerged from the locally collected data around the barriers and facilitators to ACP. In total, 7 themes were identified: education, communication, disease and treatment, time, family and patient support, healthcare professional support, and environment. The themes identified were semi-reflective of the themes discussed earlier in the existing literature.
ACP goes beyond clinical decision-making, including but not limited to spiritual needs, religion, and personal support such as the ordering of financial affairs (General Medical Council 2010). The responses received indicated a focus on clinical decision-making around resuscitation and end-of-life care and gave little consideration to the holistic aspects of ACP. On review of the responses from medical practitioners, there is a clear perception that ACP is about preparing for the end of life when a patient is close to that point, with a focus on clinical decisions around resuscitation, ceilings of care, and symptoms. Whereas the nursing responses took a more holistic approach, perhaps an indicator that these discussions are better understood, and exposure is higher among the nursing profession. Equally, this could be an indicator of the pressure and time limitations of medical roles, making prioritizing ACP a challenge in practice.
A central barrier to the implementation of ACP was education, which was frequently highlighted in our study. Consequently, a misunderstanding of the breadth of ACP was evident with negative feelings being expressed, e.g., not giving up, highlighting the missed opportunity to consider palliative care needs in a holistic manner for a time when they may be most needed (Samala et al. Reference Samala, Valent and Noche2019). Equally, patient understanding of ACP needs to be improved through patient-centered education so as not to evoke negative emotional responses. The importance of education in this setting was highlighted by Toguri et al. (Reference Toguri, Grant-Nunn and Urquhart2020) where a small in-depth study, including 10 oncologists, highlighted a lack of education and training, along with poor communication as key factors in missed opportunities to explore ACP. Poor communication may also be attributed to a lack of formal training in ACP, associated with a high level of clinician discomfort (Chandar et al. Reference Chandar, Brockstein and Zunamon2017). It has been promoted that both patient and staff educational needs are key but in general this is an under-appreciated area within the relevant literature, and education around ACP could have a significant effect on the other themes identified within the literature, if not being considered as a core element.
Communication is a core element of ACP, both as a barrier and a facilitator. However, it was important to note that the evolution of telemedicine, in particular in the aftermath of the COVID-19 pandemic, limited effective ACP owing to the lack of engagement with patient relatives. The pandemic brought many healthcare challenges and had a significant impact on the way in which healthcare is delivered, including ACP (Block et al. Reference Block, Smith and Sudore2020; Florencio et al. Reference Florencio, Cestari and Campos de Souza2020). At the time of this study, the institution did not allow visitors unless a patient was at the end of life, and patients had to attend appointments alone unless receiving a new diagnosis. Patients with haematological malignancies are at extremely high risk in terms of infection, and therefore it is arguably more important to ensure ACP is central to care (Sinclair et al. Reference Sinclair, Nolte and White2020). What is important to note is that the ultimate goal of ACP is to ensure a patient’s wishes are known should they no longer be able to communicate them themselves (Overbaugh Reference Overbaugh2020). As such, practitioners should consider all possible causes of a loss of ability to communicate as a potential outcome of not just the disease and treatment, but also infections as a result of immunosuppression.
It is clear that communication can support ACP, including multiple discussions, space, and time to gather thoughts and assimilate emotions (National Health Service 2019). Patient understanding and cognition are complex issues, including cognitive impairment through disease and medication, but also reflective of background educational level, occupation, and language barriers. Utilizing different methods to communicate can overcome such barriers in ACP, such as interpreters who have been trained in ACP.
The importance of family dynamics in the individualization of ACP was prominent in our study, contrary to published experience. Some researchers have focused on the allogenic stem cell transplant setting in ACP where both patients and family were proven to be essential in reducing the burden of ACP decision-making (Loggers et al. Reference Loggers, Lee and Chilson2014). Our study focuses on the clinical team delivering care and their attitudes. There is a clear need for family presence and involvement when having ACP discussions, dispelling negative preconceptions about ACP, and breaking down communication barriers. One clear issue was at which point in the journey did the clinical team feel discussing ACP was appropriate. Concerns were raised including therapeutic optimism (Sudore et al. Reference Sudore, Lum and You2017). This relates to healthcare professionals’ educational needs and identifies a need to empower these professionals in a supported manner to engage in ACP discussion. There are many stages in the patient’s journey where this can be raised (Eckert et al. Reference Eckert, Schoenbeck and Galligan2017), but given the nature of haematological malignancies and the unpredictability of their course, this makes the timing of ACP a challenge. What is apparent when reviewing the themes identified and the underlying data is that that all the themes interlink with responses crossing into multiple themes and although not directly referenced to the literature, there are certainly links. As is evident within this discussion, education appears to be a central theme from which all the others either emerge or are linked to.
Within the introduction to this work-based study, it was implied that ACP is something that the collective “we” (hemato-oncology) are not particularly good at. This point is evident in the existing body of literature and within the responses received in this study. The study saw an overwhelming list of barriers, with significantly fewer facilitators. Perhaps this is indicative of a negative mindset with regard to ACP in hemato-oncology. Or perhaps this links back to the overarching theme of education within this study and a lack of understanding and exposure to ACP in practice. Interestingly, when considering the barriers and facilitators to ACP, many of the barriers that were listed have the potential to be facilitators, if implemented or utilized slightly differently.
Hemato-oncology presents challenges when it comes to ACP. ACP is often associated with end-of-life care, and it is clear from responses received that this is how it is viewed within the local hemato-oncology unit. However, it does not have to be initiated at the end of life, if anything that may be far too late. If practitioners take the approach that they initiate ACP discussions when a patient is approaching the end of life, then it may be missed for those where the point at which they are approaching the end of life is unclear but that death is a very real possibility as a result of treatment they are receiving. ACP needs to be considered in circumstances where the outcome is unclear. In the words of Abel et al. (Reference Abel, Kellehear and Millington Sanders2020), “we start at the beginning and not the end.” This study along with the existing literature recognizes the challenges associated with defining the end-of-life phase in patients with haematological malignancies (McCaughan et al. Reference McCaughan, Roman and Smith2018). As such, it provides evidence to support earlier intervention. There is a common misconception that any element of palliative care is tantamount to end of life when ACP could be initiated in any stage of the disease (Samala et al. Reference Samala, Valent and Noche2019).
This study has given a firm basis to plan how the implementation of ACP may be improved within hemato-oncology, utilizing existing literature along with the locally collected data. It is clear that staff education is needed to counter what is a central barrier to the effective roll-out of ACP through supporting staff by improving their knowledge to have a positive effect on patient understanding, implementation, and the delivery of ACP.
Existing evidence indicates that patients are more likely to access ACP services if they are aware of them (Webb et al. Reference Webb, LeBlanc and El-Jawahri2019). It is proposed that a voluntary patient education program in ACP be considered, utilizing external services who would be involved in potential future care including but not limited to hospices, community teams, and local palliative care services. ACP is associated with improved quality of care at the end of life and an improvement in patient and family satisfaction, as such it is essential that ways in which its utilization can be improved are considered (Toguri et al. Reference Toguri, Grant-Nunn and Urquhart2020).
This study aims to add to the existing body of literature, by supporting that which exists but also placing a strong emphasis on the need for improvement in staff and patient education along with suggesting earlier discussions are required. Currently, ACP discussions are very focused on end-of-life care (Abel et al. Reference Abel, Kellehear and Millington Sanders2020). This was clear in the data collected, which was clinically focused on end of life. However, somebody may be dying for weeks, months, or years as is the case in myeloma which carries a terminal diagnosis but potentially extended periods of remission. The treatment patients receive for haematological malignancies has the potential to result in death. As such, Abel et al.’s (Reference Abel, Kellehear and Millington Sanders2020) point is supported by this study; ACP should not be confined to times of crisis but discussed in the face of “living with dying” and preparing for all eventualities. In order to do this, staff and patients must have a sound understanding of what ACP is. When the House of Commons Health Committee (House of Commons Healthcare Committee 2015) reviewed end of life care following the independent review of the Liverpool Care Pathway, it found that quality and practice were unlikely to improve unless clinicians felt confident having discussions with patients about their wishes, stating that “at the most difficult of times, their experience will be made worse if they encounter poor communication and planning or inadequate professional expertise.” It recognized that staff often felt they lacked the skills, confidence, and training to raise ACP issues, as was identified in this local study.
A limitation to this work-based study is the relatively small cohort, and it was a single-center study. However, many of the themes and barriers identified in this study are intrinsic to the practice of hemato-oncology; therefore, the findings are more likely to represent systemic features of hemato-oncology care and not the deficiencies of individual practitioners. It is also noted that given the links to the themes in existing literature, this study is applicable in terms of its wider generalizability, and it could be applied and reproduced in other specialisms as the design of the questionnaire used was not specifically limited to hemato-oncology. Although it was possible to attain the required data, issues around barriers and facilitators to implementing ACP lacked clarity in responses on occasions. Therefore, future questionnaires would need revision to allow more accuracy in responses and therefore data evaluation. In addition, the time-related limitation of undertaking the study during the COVID-19 pandemic may have impacted the ability of those identified to complete the survey. COVID-19 has permanently changed models of care, and as such, many of the issues in healthcare as a result of these changes, including less face-to-face patient reviews, still exist. Disease-specific areas within the responders’ clinical practice were not identified and may have led to variation in responses, as team-delivered care can have a bias on attitudes and practice toward ACP.
In summary, this study has highlighted that ACP can be poorly implemented arising from contributory issues, in particular education. This study proposes that ACP is valuable and essential for patients not only with a terminal diagnosis, but also for patients undergoing potentially curative treatment which carries a significant mortality risk. Improved utilization of ACP could be achieved through mandatory staff education in ACP and advanced communication skills, and a multi-disciplinary patient education program. The potential impact of delivering this in terms of improving the facilitation of ACP to a high standard in haematological malignancies cannot be overstated. ACP is associated with a reduction in the number of days in hospital in the last year of life with less healthcare costs, as such along with improving staff and patient experience it has the power to have a significant impact on our health service (Abel et al. Reference Abel, Kellehear and Millington Sanders2020).
Acknowledgments
G.C. and C.P. were supported in part by the National Institute for Health and Care Research (NIHR) Leeds Biomedical Research Centre (NIHR203331). The views expressed are those of the authors and not necessarily those of the National Health Service, the NIHR, or the Department of Health and Social Care. C.P. and A.K. are supported in part by the Medical Research Council. We thank all the members of staff who participated in this study.
Author contributions
J.T. designed the study, collected the data, and performed the analysis. J.T. wrote the manuscript, which was reviewed by G.C., C.P., and A.K. as a final draft. J.T. is the guarantor author.
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Competing interests
The authors declare no competing interests.
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