This study investigated the views and experiences of ACP from two stakeholder groups: advanced cancer patients and their families, and oncologists. It was identified that ACP was positively viewed by patients and families; however, there was a discrepancy between what patients wanted to know and the information they received prior to making informed ACP decisions. Despite the overall positive attitude, patients and families expressed concerns that there was a lack of accessibility to HCPs as well as a lack of communication between HCPs.
Oncologist expressed difficulties initiating ACP and using their clinical acumen to determine when they believed it was appropriate. They experienced ACP as difficult when navigating conflicting preferences between patients and their family. Oncologists identified a lack of training in ACP, from undergraduate medical education to continuing professional development. They also identified areas that could be actively targeted to improve ACP. One area of strength was the use of a team approach. Despite the advantages of a team approach, there were also notable challenges, including the need to improve system-level functioning. This study provides important insight into ACP processes and experiences across multiple stakeholder groups. Despite an awareness of the importance of ACP since at least the mid 1990s (19) and the more recent movement to a person-centred care model, there has been limited research conducted on what patients think about ACP or their views on how ACP is performed. Instead, studies have investigated the views and practices of clinicians on ACP (Reviewed by Kuusisto et al. 2020).
Commonalities And Differences In Views
Similar themes arose in both datasets. All stakeholders perceived ACP to improve patient care. All discussed existing limitations to providing optimal ACP due to lack of services and supports, whether that was access to HCPs and needed services or a lack of coordination across providers and systems. Additionally, both groups identified communication between HCPs as suboptimal. Patients and families referred to a lack of relational continuity, or the continuity of the therapeutic relation between the patient and healthcare provider(s), as well as decreased informational continuity (21) as concerns impacting ACP, while oncologists expressed problems with disrupted informational and management continuity. Whereas patients and families desired earlier initiation of ACP, increased knowledge about their disease process, and more through discussion of future care options, oncologists believed these discussions occur when appropriate following their evaluation of a multitude of factors. Systems-wide, oncologists discussed several challenges and stated their desire for increased accessibility to and standardized documentation of advance care plans.
Comparison With Existing Literature
The positive attitudes towards ACP demonstrated in this study has been found by others for older patients and those with advanced illness (22–25). Nonetheless, some research has reported that patients and families do not want to discuss ACP due to fear of death or not wanting to break their optimism (26), or because patients did not fully understand their illness and/or prognosis (22). Regarding the notion of breaking optimism, advanced cancer patients provided with the opportunity to engage in ACP had no significant changes in hope, hopelessness, or anxiety (17). While most research exploring patient views on ACP come from North America and Europe, interestingly, Taiwanese patients expressed views similar to patients in this study, despite cultural differences and norms. Patients expressed their beliefs that ACP consults were helpful to understand the course of their disease, rights around treatment, and treatment choices, and reported relief that they had a future plan (22).
HCPs typically acknowledge and accept the benefits of ACP in terms of improving person-centred care (27). However, EOL discussions have been described as one of the most difficult aspects of oncology (28, 29). In this study, oncologists reported feeling comfortable initiating ACP discussions and discussing treatment during EOL but, at the same time, reported difficulty with extending these conversations to include the non-medical aspects of ACP (e.g., legal issues). When they do initiate these conversations, participants described doing so based on their own clinical acumen. Similar experiences have been described in other studies (30, 31). Kim et al. (2020) showed that the physician’s interpretation of a patient prognosis was a key factor in initiating ACP discussions in primary care. Despite this, a Canadian study of ACP and EOL plans in elderly individuals, who were at a high risk of death in 6 months, described that although > 75% of patients had thought of EOL care, only 47% had completed ACP and less than 30% had discussed their wishes with their family physician. Approximately 55% had discussed their wishes with a HCP (5). Arguably, ACP discussions may be occurring late in the disease course if they are left until a palliative care referral. Indeed, patients and family members in this study suggested that when ACP does occur, it is often too late to put plans in place to ensure a patient’s preferences are met. A recent Nova Scotia-based study on palliative care consultation and aggressive EOL decisions in unresectable pancreatic cancer demonstrated that > 25% of patients received a “late” (more than 8 weeks following diagnosis) palliative care consult, and > 15% received no palliative are consult. All patients lived less than one year (32).
Given the recognition that many patients do not engage in these discussions with their healthcare teams, tools and resources have been designed and tested to support patients and HCPs in having these discussions. The Serious Illness Conversation Program from Ariadne Labs is one tool for clinicians that has been used throughout the United Sates and has begun to permeate Canadian healthcare, such as in British Columbia (33, 34). Similarly, Huang et al., (2020) tested a three-step structured process to support physicians in engaging in ACP with their advanced cancer patients: 1) an initial discussion about treatment choices and options; 2) a consult with palliative care specialist (if the patient desired) giving possible benefits and negatives of treatment choices alongside resources to help patients explore the EOL preferences; and 3) deliberation about the options available and documentation. Documentation of DNR changed from 0% following the initial talk, to 44.3% after the second part, to 80.9% following the final discussion. Following the decision talk, 80% of the patients felt their EOL goals had been discussed (35). Definitive protocols and tools/resources that support ACP appear particularly useful in terms of ensuring these conversations occur rather than relying on clinical acumen to do so. Future research should investigate the best strategies to implement such protocols and resources in practice, so they are routinely used in the course of clinical care.
Still, the provision of protocols and resources to support ACP may not lead to physicians initiating these conversations if they lack the confidence or skillset to do so. As oncologists in this study discussed, they do not necessarily have the skillsets to manage the psychosocial aspects of advanced cancer care, nor do they necessarily feel ACP falls within their scope of practice. These views may reflect a lack of confidence and training in ACP. Fulmer et al., (2018) found that physicians experience many barriers to ACP, including disagreements between family members (65%), feeling uncomfortable with the conversation (51%), not knowing the right timing (60%) and a lack of training in ACP. Less than 29% of physicians surveyed in that study reported any formal ACP training. There is limited literature discussing physician ACP training. However, those who have tested training sessions have observed improved patient outcomes, including ACP documentation (22) and decreased patient anxiety and depression following ACP training with the Serious Illness Care Program for clinicians working with oncology patients (36, 37).
Oncologists in this study discussed expectations around other HCPs, particularly PCPs whom they felt should play a larger role in ACP. Studies investigating ACP in primary care demonstrate an area for improvement. A Canadian study found PCPs were willing and confident in engaging in ACP discussions, but were not often doing so (38). The same study investigated non-physician HCP willingness, confidence, and engagement in ACP. They reported high confidence and willingness amongst non-physicians to engage in ACP discussions, yet a situation whereby these professionals almost never initiated these conversations. A review on PCP and nurse involvement in EOL describes an active role in ACP, yet noted they were less likely to be involved if the patient had cancer (39). Within oncology, palliative care nurses have been shown to increase the number of ACP discussions as well as hospice referrals (40). Oncologists in this study perceived the role of nurses in ACP as limited. However, some jurisdictions such as British Columbia, Canada, are training nurses to engage in ACP, with modifications to delivering prognosis (33, 34). With appropriate training, non-physician HCPs may play an important role in these conversations and alleviate some of the pressures placed on physicians to initiate ACP.