IAHPC BOARD MEMBERS’ REPORTS

Caught between a story and a questionnaire – can we really assess quality in palliative care?
By Dr. Lukas Radbruch

I am spending my working life in a tertiary palliative care center in Germany, a country that has been ranked high in the global mapping of palliative care. Our position may be described as follows: the pioneer days are over and now we are part of regular health care. This also means we have to struggle for resource allocation (same as every other sector of the health care system) and with new competitors in the field (and some of them with rather questionable qualification and quality of work from my perspective).

This means that the urge to assess and evaluate quality of care becomes more important. Quality indicators in general as well as outcome indicators specifically are increasingly being discussed for palliative care in Germany, as in many other European countries.

I thought we had been well prepared for this discussion, as we had researched outcome and potential indicators for more than ten years with the German Hospice and Palliative Care Evaluation (HOPE). Unfortunately, every time I thought we finally had a good grasp of good indicators, results from nationwide surveys in HOPE showed major flaws.

For example, I am sure the readers will agree that patient-reported outcome measures (PROMs) are preferable, as patients will know best about the intensity and nature of (subjective) symptoms and problems. However, with advanced disease and even more frequently in the final stage of life many patients are not able to answer even simple and short questions on symptoms burden, due to cognitive and/or physical impairment. Or we ask staff to rate symptoms as proxies, but then low intensity and frequency of symptoms might mean that the service is really good, or that staff is ignorant of the suffering of their patients. And in dying patients, where quality assessment would be most important, self-assessment does not seem feasible at all.

So maybe we should concentrate on the important concepts and values of palliative care, such as quality of life and the meaning of life or dignity. However, this does seem even harder to assess. Quality of life seems a rather elusive concept, and one of the best definitions of quality of life is the Calman gap: quality of life is the difference between status and expectations. Which means that you can raise the quality of life much easier by reducing the patient's expectations than by reducing his symptom load or improving his performance status. But this is not what we set out to do, is it ?

New assessment methods such as the Schedule for the Evaluation of the Individual Quality of Life (SEIQoL) have helped to grasp the scope of different priorities in individual patients, but again this instrument is not really feasible for severely ill and dying patients. I suspect that it assesses the reduction in expectations perhaps better than the improvement in function and status. A similar instrument has been designed to evaluate the individual’s meaning of life, but the results seem to overlap so much with quality of life that I wonder whether patients can really differentiate between the two concepts.

For dignity there seems to be no attempt at developing a score or instrument, and I am rather grateful for that. I am convinced that dignity is an individual concept (similar to quality of life). Any attempt to capture it in a set of questions or items will make it measurable, but it will focus on these questions, or items, and therefore most probably move it away from how the patient understands his dignity. In other words, we can try to operationalize dignity and measure it, but all we do is measure only what we understand dignity to be, and then we lose sight of the patient's perspective. The patient's story may be more important that any questionnaire.

I am quite sure though that it is only a question of time until somebody invents the palliative care dignity score. There have been other attempts to measure the immeasurable. A work group from Belgium has recently published a score for unbearable suffering, assessing the degree of unbearability for 69 items in five domains (http://www.biomedcentral.com/content/pdf/1472-684X-8-16.pdf). I always thought that suffering is either unbearable or it is not, and that unbearable could not be subdivided in degrees. But there you are.
 
In conclusion, I would hold that we have to assess quality of care and outcome, and we should use the best available instruments as indicators, for example the Edmonton Symptom Assessment System (ESAS) or the Palliative Care Outcome Scale (POS). However, we should be well aware that there are some central values that may be immeasurable, such as dignity (and maybe quality of life), and the best quality indicator for these values may be the number of patients that have been asked about their individual concept of dignity (or quality of life) and how we can best help them to attain that concept until the end of their life. We need both, questionnaires and stories, to look at the quality of palliative care.

Dr. Lukas Radbruch is a board member of the IAHPC since 2011. He is, Chair of Palliative Medicine, University of Bonn, Germany. His bio may be found at: http://www.hospicecare.com/Bio/lukas_radbruch.htm