Welcome to ehospice

Categories: Community Engagement.

The information and communication technologies available today have vast capabilities – people are now able to communicate and collaborate in ways that were unthinkable 20, 10, even five years ago – and this is where the concept of ehospice came from.

Technology has become so responsive and convenient, that it is taken for granted in daily life. We do not pause to think about how astounding it is that we are able to communicate with another person or group of people on the other side of the world, almost instantaneously.

This potential for instant communication has led to suggestions that information and communication technology should be viewed more as a space of interaction than a communication tool. ehospice aims to provide this space for interaction and collaboration, and the sharing of information, tools, advice, and resources between people involved in hospice, palliative and end of life care all over the world. Dr Anil Paleri, Hon. Secretary of the Indian Association of Palliative Care, in his introductory statement on the ehospice India site, quoted Victor Hugo, saying: “You cannot resist an idea whose time has come.”

In his article on social media and palliative care (this issue), Dr Jim Cleary points to the importance of people’s engagement with technology, so that it becomes more than just a tool. Particularly in the field of palliative care, where resources are so limited, it is vital that we draw on any opportunity to enhance our efforts. 

ehospice is designed to use the technology available to make our own work easier, to allow us to share our burdens as well as our good practice, learning, and information resources to provide the best hospice and palliative care to patients, family, and friends.

The time for ehospice is certainly here. Dr Liz Gwyther, CEO of the Hospice and Palliative Care Association of South Africa, and David Praill, CEO of Help the Hospices and co-chair of the World Wide Palliative Care Alliance, prepared a joint statement on ehospice:

“The vision of ehospice is to be part of a networked world, collaborating and communicating to improve patient care. None of us act in isolation, although we may often feel that we are working on our own. ehospice is designed to reduce isolation in day-to-day hospice and palliative care work.”

Dr Yvonne Luxford, CEO of Palliative Care Australia, said that her organization is proud to be part of the ehospice community: “This gives us the opportunity to exchange with the rest of the world both information about the best palliative care innovations, and the stories of real people and their experiences. We all have much to learn from sharing throughout the global palliative care community. This is an important day for the sector and we look forward to realising the benefits, especially in the form of improved patient care, that this project will bring,” she said.

ehospice creates new opportunities for improved patient care through broader and quicker access to information, and therefore better understanding of issues affecting the palliative care community worldwide, according to Dr Emmanuel Luriyika. In an interview with ehospice Africa, he said: “With ehospice, providers, promoters and patients are equally beneficiaries.”

Sharon Baxter, executive director of the Canadian Hospice and Palliative Care Association, said: “ehospice is a great opportunity for us to come together as an international community. It’s going to be a wonderful tool to connect and ensure that we are all up to date on hospice palliative care news both locally and around the world.”

Dr Anil Paleri said that the Indian Association of Palliative Care is happy to be part of ehospice and to be managing the Indian edition. He referred to the significance of the launch date of ehospice, as 2 October is the birth date of Mahatma Gandhi, who had always kept suffering, ailing and marginalised people close to his heart. Dr Paleri said: “ehospice will change the way information on hospice and palliative care is shared worldwide. It will be easy to access and open to all. We wanted it this way and remember what Gandhi has said: ‘Be the change that you wish to see in the world’”.

Dr Zipporah Ali, the national coordinator for Kenya Hospices and Palliative Care Association (KEHPCA), said that she was very excited about ehospice, adding: “I believe that this is going to bring all hospice and palliative care workers together, as well as interest other people who are very key in making this world a better place for those living with life threatening illnesses. There is so much we can learn from each other and so much we can do if we work together. The palliative care/ hospice family is expanding, and ehospice is part of that expansion.”

With eight editions launching in October 2012, and two more coming on board in January 2013, ehospice is growing to become more representative of the world of hospice, palliative and end of life care. 

Dr Jorge Eisenchlas, Medical Director of the Continuum Home Care Programme in Argentina, expressed his support for ehospice, and his enthusiasm to join the project: “From Argentina, and on behalf of my country as well as Latin America as a whole, we say thanks for starting this project which shed light into the global palliative care arena. There is no doubt that ehospice is going to improve every aspect concerning hospice care. We expect to have our local edition too, hopefully in the very near future, to the benefit of more people in this part of the world.”

Donald Schumacher, president & CEO of the National Hospice and Palliative Care Organization (NHPCO) in the United States, remarked that “ehospice will help us reach out to health care providers who need tools and information to help the patients and families they care for access hospice and palliative care services in a timely manner. The mobile app will put information that matters in the hands of professionals who can use it to make a profound difference in the care they provide.” The United States edition of ehospice will launch, along with the Latin America edition, in the new year. 

In addition to the ehospice editions worldwide, there will also be an international children’s edition, where you will find news related to children’s palliative care form all over the world. Joan Marston, CEO of the International Children’s Palliative Care network said: “This is an exciting time in the development of palliative care for children worldwide, with increasing awareness of children’s palliative care needs and a real attempt by professionals from a variety of countries to share their knowledge and experience. The launch of an international children’s page on the new ehospice website is an effective way of getting the message to many more people in different parts of the globe and raising the profile of children who would benefit from palliative care.”

As you begin to use ehospice, you will get to know how you can contribute and what you can take from this collaborative enterprise. You can submit your news and as people start to engage, you will be able to access current news, advice and best practice examples from others all over the world. For example, find out how to construct an inpatient building using the earth of the ground on your hospice site, through an article about Tapologo hospice in Rustenburg, South Africa (upcoming). Get to know leaders in the field through personal profile articles, like the profile of the new APCA CEO Emmanuel Luyirika, on ehospice Africa. Access resources such as toolkits and charters, including the European charter for the rights and responsibilities of volunteers (this issue), and the Southern African HIV Clinicians Society guidelines for anti-retroviral therapy in adults (Africa edition).

ehospice is an emerging and dynamic site of sharing and learning. It will grow through the contributions of the readers, and take shape in response to your needs. If there is something that you would like to see on ehospice, please let us know either by using the online form or contacting a member of the ehospice team.