OS: Palliative care at King Hussein Cancer Center is developing rapidly. We are the largest, most comprehensive palliative care service in Jordan and the region; we are housed at an internationally recognised cancer centre which is world recognised. We have been doing a lot of work to improve palliative care for KHCC patients as well as in Jordan. Currently we are developing and implementing a national strategy for palliative care where we build capacity for multi-professional and improving drug access as well as introducing the national policy to have more access to palliative care in KHCC, which is in the capital Amman, as well as in Jordan. We are collaborating with King’s College London in a very important project which is the Research for Health in Conflict where we are building capacity for palliative care professionals, specifically in research, as well as developing leaders to actually lead the palliative care stream in, to start with King Hussein Cancer Center, as well as in Jordan and ultimately in the region.
RH: I think this is a really important time for us to have this partnership. The world is changing and realising that palliative care has to be part of a health system. We’ve got the universal health coverage now says that palliative care must be provided; World Health Assembly resolutions say we must have palliative care for all and there has actually been a lack of attention for palliative care in this region and particularly in the field of conflict. So we’ve got an enormous potential to make a difference and by working with such a centre of excellence if we can achieve the capacity building goals that we’ve got in terms of being able to conduct research, generating the evidence that’s needed to improve care and translating that into direct implementation we’ve got enormous potential for change and improvement.
OS: This is agreed; now we are translating that by actually founding a Centre for Palliative and Cancer Care in Conflict which will be housed at King Hussein Cancer Center using the research grant from KCL as a seed to develop further work in the region related to palliative care in conflict.
Does this spread education to other initiatives in the area?
RH: Education is a really important component of this. So while there is the opportunity through this programme to access formal learning, there’s also the really important learning of conducting research. There’s lots of mentored support for Omar’s team for them to learn methodological expertise as they conduct high quality research, all the way from the conceptualisation of the project through to determination, publication and presentation.
OS: Sure and we will use KHCC and the Centre for Palliative and Cancer Care in Conflict as a hub for training and collaborative research with people in the country as well as in the neighbouring countries.
RH: It will be the first time that we’ve really tried to understand the experience of end of life care within displaced populations and people living in conflict, what does that mean for them? For those people that are already experiencing trauma or have prior trauma and then have the trauma of advanced disease, who may have disrupted social networks? Really what that means in terms of optimising their outcomes, that’s what we want to understand.
Do you have any plans to recruit other international partners?
OS: In this grant we have very strong collaboration with countries like Lebanon, the American University of Beirut, where we have partners working with us, and Birzeit in Palestine and ultimately in Turkey. This is as principal partners now and definitely we are planning to expand this work beyond these countries to other neighbouring countries, for example in the Gulf region, as Richard is probably working on that too.
RH: We’ve already had meetings in Oman, they’re interested in this work and were very excited by the fact that we already have an established partnership with Jordan; that was seen as an important first step in establishing closer connections in the region. We’re also starting to work in paediatrics now within this partnership in Turkey. So there’s an enormous potential for growth in the region.
How does palliative care sit alongside cancer care and mental health?
RH: Palliative care has to be part of the offering for people with a cancer diagnosis, for those who have uncertainty, but also those for whom it is decided that treatment is no longer applicable. So, palliative care must be provided as part of the cancer journey because we cannot withdraw care and cease to support patients and families once we decide that their cancer is no longer treatable or curable.
OS: In addition, mental health and psychosocial care are actually a very strong component of palliative care as well and in the bigger picture of cancer care. So, in fact, in KHCC we are also looking into improving psychosocial and mental health for cancer patients in KHCC and even more beyond in the country and in the region as well, in collaboration using this grant as actually a tool or a mediator to develop this further.
RH: Because the important point is in most countries palliative care has developed from within cancer and then expanded out for people with all kinds of conditions which are progressive and terminal. So by building capacity from cancer we really anticipate that people with all types of conditions which are progressive will benefit from the work that we’re doing.
How will the initiative progress over the next 5 years?
OS: Initially we need to develop training for research in the beginning, building capacity for our group, and ultimately actually develop leaders in research from a basic Batchelor level to Master degree level and PhD as well. Of course, having published the data which we are doing from research in the region will be a milestone, actually, in achieving the objectives of the grant, having more collaboration with other people and developing the centre as a hub for research excellence as well as teaching and disseminating knowledge to the other people.
RH: I think the establishment of King Hussein Cancer Center as a demonstration site for the region in how you implement patient outcome measures to improve quality of care will be a fantastic model for the region to replicate. So Omar’s team will really demonstrate that even for people with advanced disease you don’t anticipate that nothing can be done. We can demonstrate that we can improve pain symptoms, distress, anxiety and this will be a centre of excellence for demonstrating how you do that.
Do you have any final points?
OS: A very important element to what we are doing is patient reported outcomes. We need to translate our research and work to actually benefit our patients and maybe improve strategies and laws which govern the access of palliative care to those people, not only Jordanian, of course for refugees and non-Jordanians who are really suffering tremendously from cancer and they are needing of palliative care and other psychosocial and mental health care.