Special Report: Putting patients first
Professor Dr Claudia Bausewein, of the Department for Palliative Medicine at the Ludwig Maximillian University of Munich, discusses the importance of providing effective, patient-centred palliative care. The comprehensive care of persons with an incurable, progressive and ultimately fatal disease, palliative care aims to enhance the patient’s quality of life by managing pain and other physical symptoms (e.g. nausea, constipation, confusion and breathlessness), and by providing them, their carers and families with any necessary psychological, social and spiritual support.
Working within this is the Department of Palliative Medicine at the Ludwig Maximilian University of Munich (LMU), Germany, a facility dedicated to palliative research – into outcome measurement, symptom control, issues of spirituality at the end of life, and psychosocial support and care in the outpatient setting, amongst other topics – and to the education and training of medical students, nurses, doctors, and all others working within this most vital field of healthcare.
Here, department director Professor Dr Claudia Bausewein tells Portal about the challenges involved in screening for palliative care needs, explains why it’s so important to understand patients’ complexities, and discusses how pharmaceutical treatment can be better integrated into the palliative care process.
Why is it so important to measure outcomes in palliative care?
When we talk about quality in healthcare generally, we have a tendency to mainly talk about structure and process, and less about patient outcomes, and this is especially true for palliative care. The overall aim of palliative care, of course, is to improve quality of life, and this is not objectively measurable. As such, asking patients about their feelings and experiences, how they feel about their symptoms and any psychological distress, as well as about their information and practical needs, is very important, and we are therefore not only interested in outcomes in general but patient-reported outcomes specifically.
What are some of the challenges – perhaps both practical and ethical – involved in measuring those outcomes?
If you meet a patient early in their disease trajectory, then the disease may not be an overwhelming burden for them at that point, and they will therefore be able to complete a patient-reported outcome measure questionnaire. However, as the burden of the disease increases they may reach a stage where they are no longer able to read the questions, or may become confused. At this point, it becomes much more challenging to measure their quality of life, their symptoms, how they feel about their pain and their nausea and so on. We may therefore turn to proxy measures, meaning that the relevant healthcare professionals or the patient’s relatives will assess the patient to judge the situation.
Do you think that current assessment tools and indicators are sufficient enough when it comes to screening for palliative care needs?
That is a very interesting question. We have more than 100 general quality of life measures, as well as more specific ones for palliative care. We thus have enough measures, but the question of which ones are the best remains – have they undergone proper psychometric testing, for example?
Meanwhile, we are at a point where we have sufficient outcome measures for screening, but the question is whether measuring the needs of the patients should be the only criteria for screening, or if we need other, more objective criteria as well, such as the type of disease, its stage, the functional status, the information needs of the patients, and so on.
In the future, there is a sense that when it comes to the screening of palliative care needs, we will need a combination of both patient-reported outcomes and more objective ones. We have the individual measures to do that, but we need to decide on the best combinations.
Factors such as disease progression and patients moving between different care settings can present pharmaceutical care issues – how can drug therapy be better integrated into the palliative care process?
That is a very interesting point. We are exploring that at LMU because when we look into symptom control, much of it concerns giving patients the right medication, and the challenge that the doctors have is that we may not know enough about the interaction and about the side effects. This is especially true in Germany, where pharmacists are not usually included in normal patient care.
This applies to inpatient care or hospitals, as well as to outpatient and homecare settings, and GPs also experience the same problems, with patients often being prescribed drugs which may in fact be making them sicker because of the interactions. At LMU we therefore try to provide pharmaceutical advice to patients, their GPs and pharmacies in the hope that this will have a positive impact on their symptom management. We will also contact the GP if we feel there are drugs being prescribed that shouldn’t be prescribed in combination, or if there any other potential problems.
On the other side, we provide palliative care-specific drug information in Germany, where doctors and nurses can send us their questions about drug-related problems and we will try to resolve them – we aim to answer the individual queries within 24 hours.
Do you think that palliative care is approached differently for oncological and non-oncological disease patients?
Yes, I do. We are much better in providing palliative care for cancer patients, but when it comes to COPD or heart failure patients, for instance, we tend not to see many of them.
This is perhaps a result of the history and development of palliative care, in that when it began, it was mainly focused on cancer patients (for whatever reason). Over time, we have since gained a lot of experience and expertise in looking after these patients. However, what we call specialist palliative care, which includes more expertise and training and resources in this area, is in many countries still only focused on patients with oncological diseases.
We understand a lot of what is happening with these patients, but there are a number of studies which suggest that the symptoms and palliative care needs for non-oncological diseases, like lung or heart disease, might be similar or even higher than those of cancer patients but may be much earlier in the disease trajectory (perhaps one or two years before the patient dies), and no-one is thinking of palliative care at that point.
Breathlessness is an interesting symptom here. While the underlying disease (such as COPD or heart failure) is addressed by the relevant healthcare expert, breathlessness might simply be seen as an unavoidable consequence of the disease and so therefore not explored any further. However, breathlessness as a symptom can be addressed, even if you can’t treat the underlying disease itself, and this is something that our colleagues need to realise.
How important is it to better understand the complexity of your patients?
It is of paramount importance, and we are now starting to understand what makes a palliative care patient’s situation particularly complex and how that could, for example,influence the complexity of their needs and the related resource use, moreover, how this – rather than diagnosis – could influence funding.
This is important because, in many countries throughout Europe, palliative care is funded by diagnosis-related systems. Yet data emerging from both the UK and Australia is demonstrating that the diagnosis is actually not the cost driver of palliative care and is not describing our patients.
In light of this, there must be other components and factors to describe the complexity of the situation of our patients, including their relatives, and this is something our colleagues in the UK and Australia are working on. We have now begun to work on understanding the complexity of palliative care patients in Germany much better, and the hope is that there won’t be much difference across countries. Then we may be able to develop similar factors which could finally lead into a funding system like that seen in Australia.
Professor Claudia Bausewein
Department of Palliative Medicine
+49 89 4400 74929
