Lukas Radbruch (President of the European Association for Palliative Care 2007-2011) and Chair of Palliative Medicine at the University of Bonn, Germany, continues our special series of blog posts to celebrate the 25th anniversary of the EAPC. While clinical care is getting better in Germany, he reminds us that there is still much work to do and encourages us all to advocate for global access to good palliative care.
In the week before Christmas, I was called to talk to a patient in the neurology department. He suffered from recurrent glioblastoma, and in the last two days his state of health had deteriorated rapidly. Pain and other symptoms were well controlled with our palliative care regimen, but his wife did not want to take him back home, and so transfer to a palliative care unit or a hospice had to be discussed.
However, talking to the patient and his wife (a general practitioner herself) it soon became clear that the wife was only afraid of being left without any support over the holidays. The 14-year old daughter had already stated clearly that she wanted daddy home for Christmas, and the wife was happy to agree with discharge and home care once we explained that we could provide on-call services at home with our specialist palliative care team.
We also agreed that most probably the patient would need to go to an inpatient hospice after Christmas, if his health continued to deteriorate. I was surprised to find that the local hospice had already agreed to continue with his bevacizumab chemotherapy (which he was desperate to continue) in close collaboration with an oncologist nearby. Until now, hospices (providing end-of-life care in Germany) had declined categorically to provide chemotherapy, so this is really a new development!
This makes me glad to work in Germany, a country with a rapid development in both general and specialist palliative care. Palliative care training is mandatory for medical undergraduate students and patients have a legal right to access to specialist palliative care at home when they need it, just to name two recent developments.
The provision of care is so good and the range of options so broad that we have to take care that we do not overburden the patients and their caregivers with well-meant support options.
I do realise that the situation is rather different elsewhere. Site visits in African countries have shown me the overwhelming need for palliative care, and the few pioneers desperately struggling to provide care to the large number of patients seeking their help. And to feel their helplessness when morphine solution, the only opioid available in the country, is again out of stock. There are some European countries where the situation is as bad, as a recent site visit in Albania demonstrated to me.
This is the reason why the EAPC has decided to make the plea for a human right for access to palliative care, as described in Prague Charter (if you have not done so yet, please go and sign the charter). I was really happy to be part of an expert group led by Tom Hughes-Hallett that prepared a report on the need for end-of-life care for the World Innovation Summit for Health, and this report has taken up the Prague Charter as one of its main points. Now we are waiting for the next World Health Assembly in May in Geneva, because there is a good chance that a declaration on palliative care may be put forward, including the right of access to palliative care.
These are but small steps to ensure that patients get the best pain relief and palliative care possible, even in resource-poor settings. It is impossible to calculate the value of advocacy – it is priceless because it helps to improve the outcome of those at the end of the chain: the individual patient and his/her caregivers.
Starting from my patient’s bedside in Bonn, it is time to go out to the benches of the national and international organisations in order to advocate for global access to good palliative care for all the patients who need it!
Here’s how you can support the Prague Charter…
Read more about the Prague Charter.
Please support the Prague Charter by signing the petition urging governments to relieve suffering and recognise palliative care as a human right.