Yesterday and today I spoke about palliative care in haematology and about symptom management. To start with that, the most important thing, and it was interesting that during this meeting we didn’t hear so much about supportive care and about symptom management and what to do about symptom management. We heard a lot about drugs and about statistics and outcomes of therapies but the side effect management we didn’t hear a lot about it.
What was good about this conference was that it was very mixed, so we as nurses, and that was the first time and also other disciplines, were involved into this important meeting. That’s why also yesterday I clarified that the roles of nurses are different but are changing and that nurses are more involved in the support process of patients and families. So, for example, when a patient suffers an oral mucositis we start very early with pain medication, start to give patients properly information etc.
Another item we discussed is the informational needs for patients and relatives on myeloma. The main message there is to give proper and honest information, sometimes written, but don’t forget the open communication with patients and families. Don’t forget that multiple myeloma patients are very, very often not only sick but also elderly patients and they often suffer with severe fatigue. So they also often forget messages so you have to repeat, you have to stay in active communication with patients and their relatives.
What advice would you give to someone aiming to treat multiple myeloma?
The advice is together with the whole treatment team. That means, of course, including physicians but also including psychologists, social workers, physiotherapists, spiritual carers, dieticians. In our setting that’s the whole treatment team together with nurses, together with nurse specialists, and to talk early enough about palliative care situations. Because, as we know, palliative care, we have more and better options for those patients but still it’s a chronic disease and still those patients, and sometimes very early, die from their disease or from the therapy or side effects they suffer from the treatment. So that’s why it’s important, together with the patient and the family, to start early enough talks with them about palliative care. Because, in my opinion, when you don’t do that it’s a missing chance and sometimes you will be too late or for patients it’s too late to do all the things that they want to or want to speak with families and want to arrange some things they want to do in this end of life phase.
How does the attitude to palliative care vary worldwide?
We see differences and we see differences between clinics and between countries. In some countries healthcare professionals won’t speak about palliative care because they want to cure people and they want not to talk about palliative care. In some, and I would say more the Nordic countries in Europe, may be more open and discuss very early this situation of palliative care of the end of life situations.
So what is interesting, and I really don’t know why, is that in oncology patients, and that’s my feeling, healthcare professionals discuss in an early phase palliative care situations as in haematology settings and I don’t know why
In your opinion, what is the best approach?
For example, in multiple myeloma patients I wouldn’t start directly after diagnosis. In most cases, if possible, you would offer a patient an autologous stem cell transplantation and as soon as they relapse from their disease I would start talks about palliative care.
Any final thoughts?
In general the role of nurses is changing worldwide and that’s why also, as a haematology nurses and healthcare professionals group, we have done in the last months a worldwide survey because we want to know the role of nurses because we know it’s changing. In some countries nurses are doing already bone marrow punctures and nurses are already doing the insertion of central venous catheters. In some countries nurses have started really now to take blood samples so the differences are so big among countries and sometimes differences among clinics into countries.
We will publish the outcome of those world changes this year but also the needs of haematology nurses. One of our main goals of our organisation is to educate nurses and healthcare professionals. This year, in June, we will start with web-based healthcare learning programmes. One of the first web-based learning programmes we will launch this year is a programme on multiple myeloma.