Introduction
This case presents an ethically challenging issue that may resonate with other palliative care services and has the potential to become increasingly relevant in the future. The “case study” relates to the involvement of a patient consumer representative on a palliative care committee and, in particular, the issues and complexities that can arise, if or when that person becomes more unwell or debilitated by advancing disease. The specifics have been substantively amended to maintain confidentiality and preserve anonymity; however, the broad concepts remain and provide a focus for further discussion.
The palliative care committee in this particular situation had been established within a hospital to monitor and evaluate policies and procedures relating to the use of a new medication. This medication was suggested to have wide-ranging, symptom-relieving benefits in advanced disease and had broad public and political support but limited high-quality evidence supporting many of its claimed indications. Committee membership and structure was discussed within the palliative care service and the importance of both multidisciplinary and consumer representation reinforced. Given that the medication was for symptom control in people with advanced disease involved with palliative care, it was felt that people matching this description would be best placed as a consumer representative(s). Recruitment occurred from a body of lay members of the public who had previously expressed interest to the hospital about participation in committee activity. Mostly consisting of past or present patients of the hospital, the only requisites were English language proficiency and the voluntary donation of time as all consumer positions were unpaid.
“Helen” was ultimately selected to be one of three consumer representatives on the committee. She was a 67-year-old woman with a history of breast cancer. Although the exact details of her diagnosis were not known at the time of recruitment, at the first meeting of the committee, members were invited to share their role and reason for membership with the other committee members. At this point, Helen voluntarily disclosed that she had metastatic cancer managed on hormonal treatment. She had multiple sites of visceral disease, which her oncologist had told her were currently stable. Helen indicated that the reasons she had been interested in community involvement included a desire to “give back” to the community who had provided her care and for the intellectual stimulation associated with discussing and debating issues.
Over the subsequent period, the committee met regularly and it became increasingly clear that Helen's health was deteriorating. At first, changes were fairly subtle and included the odd stumble when getting up from a chair and the occasional jumbling-up of words. However, with time, Helen's deterioration became more pronounced with increasing unsteadiness of gait and a number of near-falls. She was admitted to the same hospital in which the committee was convened and underwent a number of investigations which confirmed disease progression, including the development of new leptomeningeal disease. During the admission, Helen was formally referred to the hospital consultation palliative care service for assistance with symptom management. Although members of the committee were not directly involved with Helen's care, in the course of regular multidisciplinary clinical meetings, the full details of her condition, diagnosis, and treatment plan became available to palliative care team members who continued to interact with Helen as committee members. Helen was able to be discharged home from hospital but unfortunately continued to deteriorate and ultimately required readmission because of ongoing disease progression. At that point, she was no longer able to continue on the committee.
Discussion
Consumer representation in healthcare decision-making and governance, including through committee involvement, has developed over the past few decades. Central tenets driving this process include quality improvement, collaboration, accountability, and “consumer centeredness” (Australian Commission on Safety and Quality in Healthcare, 2017; Consumer Health Forum of Australia, 2015; Martin & Finn, Reference Martin and Finn2011; Murray, Reference Murray2015; Nathan et al., Reference Nathan, Johnston and Braithwaite2011;). A review from the Consumers Health Forum of Australia (2015) concluded that there was substantial international evidence showing consumer representation added value to the quality of health care decision-making and service delivery. Reported benefits included better targeting of healthcare services to consumers, improved communication processes between healthcare providers and consumers, and enhanced information provision and dissemination. Despite the apparent widespread acceptance of the importance of consumer representation in healthcare governance, a number of barriers have also been identified. These include uncertainty about the purpose or role of consumer representation on hospital committees, inadequate education of prospective community representatives, and tensions in the balance between lay and expert knowledge (Consumer Health Forum of Australia, 2015; Martin & Finn, Reference Martin and Finn2011; Nathan et al., Reference Nathan, Johnston and Braithwaite2011)
The question of what actually constitutes representation has been investigated by a number of authors. The impossibility of consumer representatives to represent all the views and beliefs of a larger, broader population has been highlighted (O'shea et al., Reference O'shea, Chambers and Boaz2017). Concerns have also been raised around whether having the necessary skills and knowledge to effectively contribute to healthcare governance makes a representative in one sense “extraordinary” and therefore distinct from the wider population that are aiming to represent (O'shea et al., Reference O'shea, Chambers and Boaz2017).
The importance of patient representatives accurately reflecting the population from which they come perhaps raises additional challenges in a palliative care setting, as evidenced by the case of Helen. Many people involved with palliative care have advanced diseases; therefore, those representing this population will themselves have significant medical issues and will be at risk of deterioration. Involvement of patients with advanced diseases and significant symptom burden on palliative care committees is important because it provides valuable insight into the lived experiences of those affected, but it can also create challenges given the inherent vulnerability of this population. Because palliative care is a relatively small specialty and many patients have their care based at particular institutions, it is likely, as in Helen's case, that many patient representatives will either be already known to clinicians on the relevant committee or become known to them during the lifespan of the committee. In Helen's case, although members of the committee were not directly involved in her care while she was an inpatient, they did have knowledge of her disease, progression, treatment, and prognosis through involvement in standardized multidisciplinary team meetings. It is impossible to know for certain how this knowledge might have affected the interaction between these clinicians and Helen in the committee environment and whether this ultimately influenced the function and decision-making of the committee.
As illustrated by Helen's case, changes in the health status of the patient representative may become obvious to other committee members, but be difficult to discuss or follow-up without negatively affecting important ethical constructs such as trust, appropriate boundaries, and confidentiality. An additional ethical tension raised by this scenario is the balance between respecting the autonomy of the impaired individual to be involved in committee decision-making while also fulfilling the committee's mandate to provide appropriate expert guidance to the broader community. This is likely to be particularly problematic if the patient representative develops cognitive impairment (for example, secondary to intracerebral metastatic disease), which both limits their capacity to be involved in reasoned decision-making but also affects their insight and ability to recognize their new impairment.
Solutions to the issues raised in this case study, while easily imagined, are likely to be hard to instigate. One potential option might be for the stricter vetting of potential representatives before committee commencement using, for example, validated measures of performance status or functional capacity. This approach, however, cannot take into account the heterogeneity of either palliative care patients or the diseases from which they suffer and runs the risk of ultimately further limiting the “representativeness” of committee members. Additionally, it would require potential candidates to provide information they may not feel comfortable disclosing and mean that other committee members had information that might, consciously or unconsciously, influence interactions within the committee and ultimately affect its function. It is likely that the deteriorating health or death of a patient representative will affect other committee members on a personal level. This may particularly be the case when the individual has had longstanding involvement with the committee and in the process developed strong professional and personal relationships with some or all members. The psychological and emotional impact associated with watching another committee member's health irrevocably deteriorate may be profound for some and may be especially challenging for other patient representatives on the committee.
There are very limited published data to guide palliative care committees about how to deal with situations such as has been presented here, and it is likely that approaches will vary between organizations. We present this case because it raised ethical issues for the committee members involved and potentially represents a novel scenario that other palliative care services may need to consider and ultimately address.
Conflicts of interest
None.
Author ORCIDs
Peter Eastman 0000-0001-6626-826X and Brian Le 0000-0002-0830-4864
