Introduction
Both general practitioners and specialized palliative care teams tend to terminally ill cancer patients at home. Predicting the degree of care a patient needs, and hence, the suitable type or level of outpatient care required, is not trivial. Erring on either side will result in withholding adequate care, either by undertreating the index patient or by straining the resources available to other patients. A number of scales and scores in palliative care exists to estimate overall prognosis and partly to identify areas of need (1). The difference between general and specialized palliative care has often been defined by ‘complexity’, which is in itself an ill-defined term, and most often translates into the quantification of symptoms (2).
This analytic approach is largely driven by an effort to fragmentize the need for palliative care into manageable items, not least to justify costs. In its essence however, palliative care is a holistic approach, qualified by the need to keep in contact with the situation at large, whilst adequately addressing present symptoms (3). Hence, in this study, a tool to support decision-making in touch with the patient's situation and the caregivers' intuition was examined, attempting to establish criteria that are neither overly detailed nor arbitrary.
In particular with regard to palliative care, intuition appears to implicitly inform medical decisions more often than generally presumed. This happens rather as an unacknowledged subtext than a consciously employed and recorded method (4). Thus, to develop a scoring method, a phenomenological grounded theory approach was employed (5), evaluating existing literature on referral criteria and patient- or proxy-reported outcome measures in palliative care (6-10). The results showed that three core aspects directed the perception of a terminally ill patient's multi-facetted situation.
In a first approach, these three items had been termed ‘instability of the environment’, ‘weight of symptoms’ and ‘instability of the situation’. Upon validating this score, it underwent further development using the grounded theory process. The revised score then consisted of three dimensions termed ‘perception of strength’, ‘perception of support and stability’ and ‘medical prognosis’. This score placed a clearer distinction between patient-reported and caregiver-observed criteria. In addition, it was easier to apply in practice, as instead of being deficiency-oriented, it was resource-oriented; that is, the higher the value, the better off the patient.
As these terms, such as a coordinate system, describe different dimensions, further consolidation into a single figure would come at the price of losing information gained in the process. Thus, it was decided to record the three dimensions separately in addition to combining them into one score.
The primary aim of this exploratory, non-interventional study was to assess whether this synthetic approach to summarizing the information gathered by the initial patient work-up in an ambulatory palliative care setting may predict the level of care required.
The secondary aims were to assess whether such an intuitive assessment and its documentation were feasible in daily practice.
Discussion
There are several different scoring systems available for evaluating palliative care, starting with the KI and ECOG scores developed for use in oncology. These are still being amended to develop newer more accurate models (1,9,13). However, the focus of these models is primarily on symptom severity and overall prognosis, rather than estimation of resources needed (1,6,14,15). In 2016, an international group found six predominant themes, which largely corresponded to the dimensions of the score developed in the present study (10). Far from a one-to-one translation, other groups also came across similar dimensions to evaluate the need for palliative care. An international consensus paper on referral criteria for outpatient specialty palliative care by Hui et al (16) comprised 11 major and 36 minor criteria. Thus, a demand for brief, patient-oriented assessment tools has been recognized and is being addressed by newer scales, such as the integrated palliative care outcome scale (IPOS) (13,15).
In the present study, the practical reliability of intuitive decisions regarding resource allocations in palliative care, and whether this approach can be systematically incorporated into structured decision-making was assessed. By applying a phenomenological method to the experience of the examining physician (4,5), it was assumed that intuition facilitates perceptions that allow for a more focused comprehensive picture, in that it does not seek separated parts, but incorporates several meaningful entities which are difficult to measure. The perceived entities arise and differ depending on the question asked. Hence, the three dimensions of the score employed here feed back on the reported perceptions of the rating physician and focuses their attention towards them.
The score introduced here strongly correlated with documentation items indicating palliative care effort, such as the number of interactions of caregivers, the time required and the number of emergency visits. In this, it may actually be suitable to support decision-making about general or specialized palliative care assignments. Yet the present study has clear limitations. The numbers of patients as well as rating physicians were small, and it was a single center study. If one were to ‘calibrate’ this score, a larger population or a less diverse setting as to the patients' environmental situation would be required. In addition, it would be interesting to apply it in different countries and cultural settings to see to what extent its questions and the perceptions informing their answers are culturally defined or universal.
A very stimulating result in this context is the lack of correlation between the initial ‘perception of support and stability’ and the outcomes of interest. One explanation could be a principal inaccuracy of assessment due to rapid changes in the event of massive disturbances leading to hospital admissions or relocation to the hospice. Therefore, this constituent parameter of the score may be particularly prone to culturally defined perceptions, and further phenomenological research should deal with an intercultural and situational meaning of support. Another explanation could be that this estimator serves as an internal correction to the others. This is, in part, supported by the observation that there may be a threshold effect where patients with ‘less than sufficient’ perception of support and stability require a greater degree of palliative care. To see this statistically would again require larger numbers, but a closer prospective look at this parameter in individual future patients may help to resolve this question.
The good correlation of the scoring system developed in the present study with that of the KI for general performance poses the question whether both measure the same quality. The KI basically pertains to general physical fitness, not to dimensions of prognosis and self-perception of the patient. Still, these qualities are associated with each other; improved physical performance is likely associated with an improved perception of strength and less subjective need of being cared for.
To test for this, the KI was statistically incorporated into the scoring system, either as an additional or as a substitute for the apparently weak predictor ‘perception of support and stability’. In both cases, it performed worse in predicting the actual care effort than the original score did (data not shown), supporting a preliminary view that both do not measure the same. Again, to confirm this statistically rather than narratively will require larger datasets.
Beyond that however, the value of the present approach by its intention should not be limited to an improved prediction of care effort, but support a more comprehensive attitude of interacting with the patient, their environment and a patient-centered medical view, and to do so without being inferior in prediction to existing scores.
The idea of this approach is to counter a tendency towards ever more detailed itemizations and to direct time and attention back to inter-personal patient attention and care. In this, it is a radically pragmatic approach to utilize caregiver's capabilities of intuitive assessment in an explicit and reflected manner. It must be emphasized however, that this does not in any way imply to save time by placing a precedence of ‘gut feeling’ over factual assessment. To the opposite, the score was gathered only after a thorough initial patient workup.
Whilst this score may help to estimate the amount and intensity of palliative care required, a question not addressed here is its cutoff. Obviously, no precise threshold, but only scale areas indicating ‘rather general palliative care’, ‘rather specialized palliative care’ or ‘indeterminate’ may possibly be established in the future.
In summary, the present study explored a 3D phenomenological model and suggests, without yet defining a practically applicable discriminator, that their combination correlates with the required extent of care at least as well as existing scores. It was also suggested that performing and documenting this score is feasible in the actual everyday work of ambulatory palliative care. To validate the system for prospective application and decision-making; however, will require additional, larger and multi-center studies.