Last year the UK charity, Help the Hospices, released the Commission report into the future of hospice care in the UK, the culmination of a rigorous process of inquiry into the future environment within which hospices will operate and the readiness of hospices to thrive in this context.
Although the commission report dealt with hospice care in the UK, the lessons contained therein are relevant to many other places in the world. ehospice has gathered together advice that hospices can take forward into 2014 from interviews conducted over the past year.
Many of the people interviewed maintained that hospice and palliative care providers must remain sensitive to the cultural contexts within which they provide their care. Professor Cynthia Goh, chair of the Asia Pacific Hospice Network, said: “I think we have to find what is culturally appropriate for societies, but also for specific communities. (In the Asia-Pacific region) there are different communities, for example there are different Islamic approaches (to palliative care), as there are different Christian practices. There are also a whole range of Buddhist practices. What you need is for communities to find out for themselves how to adopt palliative care into their context.”
Patient and family involvement:
Tony Bonser, from the UK’s Dying Matters coalition, spoke about patient and family involvement in hospice and palliative care. He pointed to a change in the way in which patients and families are involved in decisions about their care, saying: “It is important that medical professionals turn decisions into conversations that the patient and family are party to, that they find out what are the comfort zone boundaries, that patients know that they are where they want to be with the people that they want around them.”
Community involvement and place of care:
Mr Bonser also emphasised the fact that: “hospices need to change the way that they are in the community. So that they are not there to serve the community, but rather that they are vibrant parts of the community itself.”
Dr Suresh Kumar, pioneer of the Kerala model of palliative care in the community, also spoke about the need to educate community members in palliative care. As the number of people attempting to access hospice services increases, he said, there will be a need to take this kind of care away from hospice buildings and into the community. It is important to empower people to provide palliative care in their own settings: “If we continuously work with the community, there will be a point where most people in the community know what to do. Eventually we will reach critical mass where the majority of people are aware of palliative care,” he said.
Mr Bonser also noted that hospice care needs to be adapted to be provided in the home, as the rising death rate will mean that not everyone can be cared for at a hospice building.
Dr David Oliviere, retired director of education at St Christopher’s Hospice in London, UK, reiterated that fact, saying: “We all need to focus on the agenda to improve end of life care services for everyone in whatever setting they are in.”
He introduced the idea of: “‘Hospice as a hub,’ a centre where people can come and be signposted and get good help from the one place, helping them to navigate the maze of services on offer.”
Research and education:
In agreement with the findings of the UK commission, many of the people ehospice interviewed called for more hospice involvement in the production of practice-based research, emphasising the value of sharing failures as well as successes to prevent repetition of impractical projects and interventions and to encourage improving on what has already been done. Professor Sheila Payne, one of the authors of the commission report on research in hospices, said: “There needs to be a testing and questioning of new innovations. And some of them will work and some of them won’t. Even the ones that don’t work will give really useful information.” Prof Payne also pointed to the importance of doing research with people who choose not to access palliative care services to explore the ways in which these services are NOT meeting the needs of some people.
Dr Oliviere agreed, noting that the most important lesson for hospices to take forward into the future is how to bridge research and practice and to keep a close link between these vital areas. He said: “We need to learn more how to do practice-based research, to study things that are going to be really useful in making a difference to people’s lives. We need to be learning all the time the implications for service configuration and practice. Hospices need to think about the changing demographics, the frailty agenda, how to get services all linked in together.
Sumytra Menon, deputy director of policy analysis and community engagement at the Lien Centre for Palliative Care, provided further agreement. She said: “We need to find more ways of working together. We need to learn from each other; other people are doing things that may be similar to our own projects, we need to learn from and build on this experience, rather than duplicate activities.”
Speaking about the importance of education in palliative care, Dr Oliviere said: “I know that is am biased, but to me education is the key. It is the fuel that drives palliative care.”
The ways in which hospices use volunteers is an area where hospices in the UK and other high-income countries can learn from care provision in resource-constrained settings. Prof Payne cited this as a key lesson to be learned within the EAPC, as well as between other countries throughout the world.
Dr Oliviere noted that hospices need to take advantage of the different skills available and use volunteers in creative ways. He said: “I think there is more mileage there. We need to have more flexible schemes. There is probably a huge range of differing volunteer training for different tasks that need performing with patients, and not necessarily clinical involvement.”
Professor Lukas Radbruch, chair of Palliative Medicine at the University of Bonn and director of the Palliative Care Centre, Malteser Hospital Bonn/Rhein-Sieg spoke about the importance of documents such as the Prague Charter for palliative care advocacy work. He said: “The Prague Charter is just one step in the larger advocacy efforts to acknowledge access to palliative care as a human right. I would like to see the Prague charter included in subsequent work, and I hope that the recommendations will be taken up in guidelines and advocacy papers.”
Dr Frank Brennan added to this, mentioning that reports by Human Rights Watch can also be used to advocate to governments for better palliative care.
Dr Zipporah Ali, executive director of the Kenyan Hospice Palliative Care Association (KEHPCA), put this advice into context, telling ehospice that what led the development of palliative care in her country was: “Advocacy! Advocacy! Advocacy! Making the case for palliative care, the increasing number of cancer cases and other NCDs, as well as the goodwill of those who are the decision makers at the Ministry (of Health).”
Building and nurturing partnerships between high- and low-resources country settings was seen as key to the development of palliative care worldwide.
Dr Stephen Connor, fellow to the Worldwide Palliative Care Alliance, said: “The future of palliative care is in low and middle income countries. We have somewhat reliable palliative care in high income countries but the real unmet need is in lower resource settings. How we meet those needs without the benefit of ample resources will take creativity, good will, willingness to do things differently, but most importantly the mobilization of community support.”
Dr Ali recognised the role played by KEHPCA’s international partners in the development of palliative care in these settings, saying: “First, they have provided the funds to support advocacy, training and education to advocate for access to morphine and the research needed to provide evidence. They have also provided technical support and assistance when needed. They have also provided mentorship and have kept on encouraging us, believing in what we are doing, trusting us to use the funds for what they are meant for.”
Emerging leaders were seen as vital to the development of palliative care. Prof Payne said: “There are some really good leaders emerging internationally and I think that’s really exciting and important. I think that’s worth investing in, so I’m really, really keen that we build this capacity, because that is what will allow this area of health care and social care to develop.”
Finally, at the end of his interview, David Oliviere emphasized that: “Sometimes we do complexify situations rather than just hold onto the fact that there are some simple things that we can do to make a difference.”
These are some considerations for hospice and palliative care providers to take forward into the New Year, selected from the interviews conducted in 2013. Do you have any others to share? Leave a comment, or email the editor.