Proxies

There are a significant number and variety of outcome measures in palliative care measuring different domains (Bausewein et al. Reference Bausewein, Daveson and Benalia2014). The idea of PROMs more broadly is to derive knowledge of their symptoms as reported by the patient themselves. That is, ultimately, why PROMs were developed in the first instance. Proxies in palliative care however, whether clinicians or families, have been shown to be, to a large extent, involved in the reporting. For instance, a PROM-PC used nationally in Australia is the Symptom Assessment Scale (SAS). It asks patients to rate symptoms such as pain, breathlessness, fatigue, and bowel problems with a numerical score between 0 and 10 (0 = no distress–10 = worst possible distress) (Bausewein et al. Reference Bausewein, Daveson and Benalia2014). A recent study of a population of mainly cancer patients (76%) found that service data entries where symptom distress was reported by patients using the SAS was 61% versus 39% reported by a proxy and that cancer patients were more likely than noncancer patients to self-report (Clapham et al. Reference Clapham, Daveson and Allingham2021). The issue of proxy reporting is evident in the literature showing that health-care professionals and family caregivers perceptions of suffering and care may be quite different to those of patients (Heyland et al. Reference Heyland, Dodek and Rocker2006; Virdun et al. Reference Virdun, Luckett and Davidson2015) and that there are regular and significant disparities between patient ratings of symptoms and that of health-care professionals (To et al. Reference To, Ong and Rawlings2012). As such, and perhaps unsurprisingly, health-care professionals tend to underestimate the extent of symptoms when compared with patient’s reports of symptoms (Laugsand et al. Reference Laugsand, Sprangers and Bjordal2010). In the context of not being unable to communicate for a multitude of reasons, a significant proportion of patients are unable to indicate a numerical score for distress themselves (Etkind et al. Reference Etkind, Daveson and Kwok2015). For example, proxy scoring of the distress on behalf of an “other” is limited in the SAS domain of poor sleep when a person is asleep and/or semiconscious for much of the time in the terminal phase of illness. Despite the ambition of earlier referral to specialist palliative care, a UK study highlighted that more than half of all referrals occurred in the last 48 days of life and referral was especially late for those with a noncancer diagnosis (median of 27 days) (Allsop et al. Reference Allsop, Ziegler and Mulvey2018). The median length of survival in an Australia study was slightly higher (54 days) (Good et al. Reference Good, Cavenagh and Ravenscroft2004). If PROMs-PC evaluation is the new and primary paradigm of evaluation of the quality of palliative care services, there is a risk of overlooking the very patients that account for a large proportion of the palliative care population.

Deficits

Herein lies a further conundrum and that is the negatively framed focus on problems, burden and distress, which are then encoded in PROMs, rather than what people can do or what they feel positive about at the end of life. This is highlighted in the growing body of public health and palliative care literature. Here the focus is on living when dying and on people’s capacity to “live full and satisfying lives” even when facing death (Kellehear and Sallnow Reference Kellehear, Sallnow, Sallnow, Kumar and Kellehear2011, 9). By way of example of such a contradiction, in the last weeks or days of life, service users are advised that “normal” and “natural” dying encompasses an expected decrease of appetite and thirst, with little desire to eat or drink. On the one hand, as part of the rhetoric of reassurance of palliative care clinicians, patients and caregivers are informed that this is a normal part of a “natural” dying process and thus is not distressing for a person. Yet on the other, as a proxy for the dying person, a family member is expected to rate distress associated with loss of appetite. Thus, the finding that there is a decline in mean reported appetite-related distress around 7–10 days before death (Sousa et al. Reference Sousa, Davis and Blanchard2022), utilizing PROMS, is perhaps unsurprising given the likely extent of proxy rating by clinicians and caregivers in the days before death. (Clapham et al. Reference Clapham, Daveson and Allingham2021) This speaks to the normative lines between “natural” deterioration, and undue suffering, which inform proxy evaluations.

Symptom-centered assessment in a person-centered process

The PROMs movement in palliative care has, for the most part, focused on patients’ reporting of symptoms. One of the core ontological issues faced in the clinical measurement literature is the issue of the extent to which a reduction of distress, as defined by symptom burden (and as articulated in the selected symptomatology), is reflective of high-quality palliative care. There is little doubt that symptoms – and patient reporting therein – is a useful indicator of some aspects of experience and can improve awareness of unmet need and assist professionals to act to address those needs (Etkind et al. Reference Etkind, Daveson and Kwok2015). The literature shows, however, that reducing particular facets of experience (e.g. pain, nausea, sleeplessness) does not always provide a holistic picture of what patients value most (MCCaffery et al. Reference MCCaffery, Bradley and Ratcliffe2016) or of overall suffering or the lack thereof, for people with palliative care needs. The selected measurement domains may not necessarily be the right ones, resulting in PROMs-PC failing to pick up the real impacts of health care in the life of patients and their families (Dolan et al. Reference Dolan, King and Metcalfe2009). In a recent study of patients with heart failure, although receptive to using the PROM provided, participants expressed that the PROM did not adequately capture key issues such as mental health and social relationships. (Davis et al. Reference Davis, Olazo and Sierra2022) A study of patients with lung cancer showed that the PROM did not capture the complexity of the symptom of breathlessness including experiential dimensions (Ji Hyun Sung et al. Reference Ji Hyun Sung, Brown and Perez-Cosio2020). Thus, clinicians are at risk of not exploring distress more globally, including psycho-existential distress, and vice versa. Any chosen PROMS-PC may conceal much of the complexity of palliative care, as evident in its day-to-day practice. Current standardization measures may not accommodate the clinical reality that good palliative care for one person, may in fact depart considerably from that of another. Scaling quality risks concealing diversity.

A focus on symptoms may overshadow other important issues. Literature from the field of health communication, for example, shows that communication between clinicians and patients is closely linked with health-outcomes (Street et al. Reference Street, Mackoul and Arora2009). Relationships between clinicians and those they care for have transformative potential (Kearney Reference Kearney2000). This is reflected in neuroscientific research whereby nocebo-related effects can produce unwanted side effects when health-care workers or medical interventions are distrusted and vice versa (Benedetti et al. Reference Benedetti, Lanotte and Lopiano2007). Studies in the field of psycho-oncology show how psychosocial outcomes that are positive can be the direct result of relational encounters (including those with clinicians) in which patients are validated and feel that they are known (Street et al. Reference Street, Mackoul and Arora2009). Reducing evaluations of the quality and successes of palliative care to symptom measurement risks devaluing other fundamental aspects of palliative care (Kearney Reference Kearney1992).

PROMs-PC in practice

Research indicates that clinicians can find implementing PROMs in practice to be taxing due to the time and effort required (Bausewein et al. Reference Bausewein, Simon and Benalia2011). Importantly, clinicians report significant ambivalence in terms of their implementation of PROMs in everyday practice. This review has highlighted concerns about distraction from the clinical interaction (Krawczyk et al. Reference Krawczyk, Sawatzky and Schick-Makaroff2018). A realist synthesis of highlighted how palliative care clinicians expressed that PROMs inhibited interactions with and minimized emotions failing to capture the complex and dynamic nature of issues important to patients (Greenhalgh et al. Reference Greenhalgh, Dalkin and Gooding2017).

The effectiveness and utility of PROMs in routine practice is influenced by how they are the implemented (Bausewein et al. Reference Bausewein, Simon and Benalia2011). In an era of datification, clinicians and managers are inclined to develop work arounds or gaming practices whereby they ignore, adapt, or change data practices to reduce the burden of data collection and/or alter outcomes (Mannion and Braithwaite Reference Mannion and Braithwaite2012; Wallenburg and Bal Reference Wallenburg and Bal2019). These strategies can compromise both the validity of the PROMs to support the care of patients and also their value as an indicator of the quality of care (Greenhalgh et al. Reference Greenhalgh, Dalkin and Gooding2017). Moreover, clinicians’ agenda for collecting PROMs are often incompatible with those of other stakeholders and significant tensions occur between administering PROMs-PC for the purposes of clinical care and for audit, research and/or benchmarking purposes (Krawczyk et al. Reference Krawczyk, Sawatzky and Schick-Makaroff2018). Clinicians are required to “simultaneously meet the needs of their patients, the patients’ networks of relations, fellow health care providers, the institutions of care, their own professional regulatory bodies, and larger governmental interests. Due to this complexity, clinicians are often pulled in competing directions” (Krawczyk et al. Reference Krawczyk, Sawatzky and Schick-Makaroff2018, 517). PROMs-PC that clinicians find useful in screening patients are not necessarily useful as indicators of the quality of a service (Greenhalgh et al. Reference Greenhalgh, Dalkin and Gooding2017). Similarly, clinicians often focus on collecting and entering data rather than using PROMs-PC to identify patients’ needs in real time, to inform and plan care (Aranha et al. Reference Aranha, Johnson and Healey2018). An ethnographic study of breast cancer nurses showed how significant recontextualization work was required to make PRO data usable and meaningful in clinical practice (Torenholt and Tjørnhøj-Thomsen Reference Torenholt and Tjørnhøj-Thomsen2021).

Red-tape or value-add?

There are indications that in highly complex organizations where services are increasingly stretched with associated workforce challenges (World Health Organization 2022) and constrained health budgets, PROMs are not the only burgeoning “paperwork” requirement in the measurement agenda. Integrating PROMS into care requires substantial human resources and high-level skills and is highly dependent on support of organizational structures (Torenholt and Tjørnhøj-Thomsen Reference Torenholt and Tjørnhøj-Thomsen2021). The available evaluative literature shows that the concern of clinicians about the time and effort involved in collecting and entering PROMs data may be, at least partially, justified. PROMs-PC, as part of routine measurement, raise ethical and moral implications, whereby certain objectives and practices are valued and others are concealed. (Mitchell et al. Reference Mitchell, Cribb and Entwistle2021)

Measuring bodies, accommodating persons?

Few studies reported patient and/or family experiences of PROMs-PC. A recent scoping review of patients’ experiences of PROMS referenced several oncology studies but only 1 palliative care specific study (Carfora et al. Reference Carfora, Foley and Hagi-Diakou2022). Studies indicate, however, that patients and families regard safe and high-quality palliative and end-of-life care as much more than symptom management (Benedetti et al. Reference Benedetti, Lanotte and Lopiano2007). Of significance and highlighted in the literature are: effective communication, continuity of care and shared decision-making; expert care; respectful and compassionate care, and trust and confidence in clinicians; an adequate environment for care; and minimization of burden to patients (Collier et al. Reference Collier, Sorensen and Ledema2016; Masson Reference Masson2002; Sandsdalen Reference Sandsdalen2016; Steinhauser et al. Reference Steinhauser, Christakis and Clipp2000; Virdun et al. Reference Virdun, Luckett and Davidson2015); avoidance of life support that is unwanted; and issues of life completion (Heyland et al. Reference Heyland, Dodek and Rocker2006).

A scoping review of PROMs in the context of cancer care found that to be successfully implemented, PROMs need to address issues of most importance to patients rather than those deemed to be so by designers (Howell et al. Reference Howell, Molloy and Wilkinson2015). Patient reporting of selective issues, in particular, symptom burden not only falls short of offering a wider picture of quality of palliative care, but may also have unintended consequences and potentially may even contribute to iatrogenic harm heretofore not considered (Wolpert Reference Wolpert2014). Coaching patients and families to construct their distress in a particular language and as a set of numerical signifiers whatever their circumstances could be problematic. Symptom scales are a decontextualized representation of the patient, in the sense that they are concerned only with the specific issues deemed important by the creator of the PROMs (Torenholt and Tjørnhøj-Thomsen Reference Torenholt and Tjørnhøj-Thomsen2021). The view of the person here is one in which the body is viewed, for the most part, as a scientific object, composed of parts made up of physiological systems that medical science aims to fix (Marcum Reference Marcum2008).

The self-monitoring of symptoms assumes that the concept of quality of life exists and is conceptually understood. Concepts such as quality of life and/or defining one’s experience as a numerical list of scores, for the most part reflect Western definitions of health. However, Indigenous people across Australia, New Zealand, and Canada for example, tend toward holistic, multidimensional, and interconnected understandings of health and well-being unable to be separated into distinct individual units (Connolly Reference Connolly2017; Durie Reference Durie1985). Annmarie Mol’s thesis takes this even further arguing that judging one’s life via tick boxes does not make sense because “you are inside your life, you live it and you cannot disentangle yourself from it and establish its quality from a distance” (Mol Reference Mol2008). The second assumption is that patients and/or families want to have greater control of their health (Lupton Reference Lupton2013). Lupton’s critique of digital engagement and patients, including in the setting of those with chronic illness, highlights how “empowerment” can become a “set of obligations” and agrees that not all people have the “economic or cultural capital to enact the “role” that is envisaged by discourses of symptom self-monitoring” (Lupton Reference Lupton2013).

In a study to investigate telehealth in palliative care, patients were asked to complete the SAS daily on an iPad. For some people, this was a reassuring and positive experience because they knew that their level of symptom distress was being monitored daily by a specialist palliative care nurse (Morgan et al. Reference Morgan, Swetenham and To2017). Similarly, day hospice patients felt that the palliative care outcome scale was useful in helping them to communicate their individual needs and concerns, especially in a shared space with little privacy (Slater and Freeman Reference Slater and Freeman2005). Community patients reported experiences of completing the integrated palliative care outcome scale was largely positive providing them the opportunity to reflect on their illness including how and to what extent it affected them (Högberg et al. Reference Högberg, Alvariza and Beck2019). Promoting self-reflection, however, assumes a desire for what Seale describes as “open awareness” and may risk further marginalizing those for whom such “open awareness” of illness and of dying is not a value or cultural norm (Seale et al. Reference Seale, Addington-Hall and McCarthy1997). Moreover, patients, like clinicians are required to do “data work” involving approximation of their embodied experiences in order to classify themselves in predefined categories (Torenholt et al. Reference Torenholt, Saltbæk and Langstrup2020). For instance, in the Telehealth study, completion of the SAS, for some people, was a constant reminder of the level of distress as a result of symptoms and for whom answering the questions was in and of itself distressing (Slater and Freeman Reference Slater and Freeman2005). A recent study in the hospital palliative care setting also showed that patients found repeated questionnaires burdensome (Whitehurst et al. Reference Whitehurst, Michaels and Montacute2014). Moreover, people often wish to express the quality, nature, and impact of their symptoms beyond that which is possible via a numerical rating via an iPad (Morgan et al. Reference Morgan, Swetenham and To2017). When Watanabe et al. (Reference Watanabe, Nekolaichuk and Beaumont2009) asked patients to examine cognitive processes in completing the Edmonton symptom assessment score, participants conveyed their difficulties in comprehending the terminology of the symptoms and would often translate the symptom term into their own words when “thinking aloud” (Watanabe et al. Reference Watanabe, Nekolaichuk and Beaumont2009). The work of Torenholt et al. (Reference Torenholt, Saltbæk and Langstrup2020) shows how patients, like clinicians, filter completion of PROMS according to the perceived purpose and recipient of these data (Torenholt et al. Reference Torenholt, Saltbæk and Langstrup2020). Some patients manipulate PRO data to minimize stigma and/or influence their treatment as Dowrick et al. found in their study of people with depression (Dowrick et al. Reference Dowrick, Leydon and McBride2009). Therefore, by promoting the articulation of distress in a particular format and through PROMs-PC there may be at risk of further marginalizing or alienating those groups who have limited or no access to specialist palliative care services.

Are we measuring what we think we are measuring?

The assumption behind PROMs-PC is that the resulting data are solid, or valid, in the sense of reproducible and reliable (Daveson et al. Reference Daveson, Allingham and Clapham2021). This is in contrast to other types of data not deemed reliable or trustworthy. Measurement tools, including PROMS-PC must serve the purpose for which they are intended, i.e. to make health services better. That is, PROMS-PC needs to have teleological value (Mitchell et al. Reference Mitchell, Cribb and Entwistle2021). The somewhat “taken for granted” benefits of PROMs-PC are mostly articulated in the health and medical literature, as a positive focus on the individual and associated improvements of clinician–patient communication and health care. Yet these assumptions and subsequent consequences are rarely the focus of deeper reflection and study (Andersson et al. Reference Andersson, Sawatzky and Öhlén2022). That PROMs’ numerical data are to be trusted more than other forms of data are debated in the literature. There is often an assumption that those collecting and entering numerical data are doing so consistently and reliably, within-patient and across patients; within services and across different services. Numerical data assume a higher status over descriptive, simply by being numerical. A recently reported ethnographic analysis on The Liverpool Care Pathway for the Dying Patient (LCP) points to the need for a more nuanced understanding of how PROMs are used in practice. Despite assumptions of “standardization” how the values represented by the LCP were enacted in different national contexts, organizations and by different clinicians were significantly different in England and the Netherlands (Borgstrom and Lemos Dekker Reference Borgstrom and Lemos Dekker2022).

While PROMs are often subjected to psychometric testing, contemporary validity theorists advocate a network of empirical evidence to support the intended interpretation and use of PROM scores for decision making in particular contexts (Hawkins et al. Reference Hawkins, Elsworth and Osborne2018). Few PROMs tools had been subjected to investigation to explore whether or not patients attributed the same meanings and interpretations to items that were intended by PROM designers (Greenhalgh et al. Reference Greenhalgh, Dalkin and Gooding2017). This qualitative evaluation of how people understand and interpret items is now advocated as integral to the development of new PROMs (Patrick et al. Reference Patrick, Burke and Gwaltney2011).

Research reported in the health and clinical literature tends to makes the assumption that the overall effects of data collection and analysis are positive, inherently “good” and not detrimental to either service delivery or expertise and experiences of patients and families as well as practitioners. Literature on PROMs-PC in the clinical field assumes, for the most part, implementation is incapable of leading to iatrogenic harms. This supposition may be misguided. For example, Wolpert posits the potential iatrogenic consequences of the use of PROMs for audit and research purposes (Wolpert Reference Wolpert2014). For example, a study exploring changes in the content of the discussion in the consultation over time found that PROMs feedback increased the frequency of clinician’s discussion of symptoms with patients, but not psychosocial issues (Takeuchi et al. Reference Takeuchi, Keding and Awad2011). In an attempt to address this gap, a recent Australian paper reports the implementation of a PROMs-PC for what the authors refer to as psycho-existential “symptoms,” i.e. the Psycho-existential Symptom Assessment Scale (PeSAS). This scale asks patients to provide a numerical score for 10 items: anxiety; discouragement; trapped by illness, hopelessness, pointlessness, loss of control, loss of roles, depression, the wish to die, and confusion (Kissane et al. Reference Kissane, Appleton and Lennon2022). Here suffering is assumed to be a “symptom” of a pathology that is “fixable.” Extending the PROMs-PC benchmarking paradigm to include a scale such as PeSAS raises further paradigmatic concerns. Physical symptoms may lend themselves to such numerical reductionism to some degree. However, whether patients can engage in a similar fashion in enumerating their psychoexistential distress needs careful and objective evaluation. Further, evaluating psychoexistential experiences in this way may result in regarding professional care as low quality should scores in the aforementioned domains remain unchanged or worsen despite intervention. This assumes, first and as den Hartogh argues that emotional states such as grief and distress are inappropriate responses to the real circumstances of a person. Second and not notwithstanding the important role of health-care professionals in providing psychosocial and spiritual support, this would mean conflating the professional role to one whereby psycho- existential “interventions” are expected to “cure” or “fix” a person. This, argues den Hartogh, crosses a boundary of what he refers to as “constraints of realism” (den Hartogh Reference den Hartogh2017) if suffering is understood as a threat to personhood as defined by Cassell (Reference Cassell1991, 2004) Ironically, as den Hartogh posits, to not be sad or even depressed in response to certain circumstances in the face of death may in fact be pathological (den Hartogh Reference den Hartogh2017).

A further assumption is that palliative care clinicians and other stakeholders use PROMs-PC data to continually improve care for patients and their families and that this has resulted in service improvements. A recent systematic review noted that while PROMs-PC appears to have an impact on processes and outcomes of care in palliative care, feedback of PROMs-PC does not appear to improve overall health-related quality of life (Etkind et al. Reference Etkind, Daveson and Kwok2015). In addition, many PROMs-PC studies relate, for the most part, to an oncology population (Clapham et al. Reference Clapham, Daveson and Allingham2021). The authors conclude that investigations of other disease and other settings relevant to palliative care need further investigation (Etkind et al. Reference Etkind, Daveson and Kwok2015).