Here Nieves Ehrenberg, Senior Researcher at the International Foundation for Integrated Care (IFIC) provides a summary of a session focusing on end of life care at ICIC19.
Christina Castillo-Rodriguez of the New Health Foundation chaired this fascinating session on approaches to care for people at the end of their lives in a more compassionate, integrated and person driven way.
The first presentation was from Dr Arturo Alvarez-Rosete, from the New Health Foundation. The New Health Foundation is a non-for-profit institution with the aim of addressing the quality of life of people with advanced diseases, high dependency and at the end-of-life. Dr Alvarez-Rosete described the NewPalex method, a systematic working approach for the development, management and leadership of Palliative Care programmes and resources. Organisations can obtain NewPalex certification through complying with a set of standards within the organization, compiled by a consensus of experts and based on internationally recognized standards. He described how this was implemented in Colombia – an article on this will be published in June in the Journal for Palliative Care.
Alison Bunce presented Compassionate Inverclyde, Scotland’s first Compassionate Community. This is a movement of ordinary people helping ordinary people. There are more than 160 volunteers, only one full time programme lead and no budget. Several programmes are delivered, including ‘No one dies alone’ with 80 trained companions who sit around the clock with the person in need during the last 3 days of life. It is completely asset based. Alison described the basis of the model was community engagement – asking people in the community what it’s like to live in Inverclyde: compassionate, helpful and neigbourly. This is what they based their values on. She shared the lessons learnt so far: a) authenticity of leaders b) collaborative leadership c) use of social media to rally up the community and share good news d) rejecting the imposition of a performance framework, so that instead of focusing on achieving certain predetermined outcomes, they focused on listening instead.
Aranxta Pineda Asarta from Osakidetza presented the multidisciplinary approach to ALS, a motoneuron rare disease in Araba, Basque Country. She highlighted the positive evidence of involving palliative care from the beginning. They have experience in managing symptoms and having the difficult conversations to help them make decisions regarding end of life.
Following diagnosis, the first contact is with the Coordinating Nurse – she starts with an assessment with patient and their family of their goals and needs. The nurse coordinates the different services required. One of the main features of the model is the concept of ‘one day-one place’, whereby the service tries to coordinate all consults and tests in one day one place to save the patient valuable time and effort.
From Hospice Isle of Man, Lonan Oldman presented her research on what young people valued when it comes to hospice care, in essence the start point for co-production, designing hospice services of the future. The main message was ‘I would want to be treated as a living person, not a dying one’. She found that they reflect what adults want too when it comes to hospice care. It’s about a) how you feel – comfortable, homely, normal (not medical) environment b) Staff qualities – should be kind c) support for loved ones – space and time and support for loved ones before and after death. They also came up with: entertainment, sport and activities, animal therapy and access to their pets, first admissions pack, among other great ideas.
Giovanna Cruz, also from Hospice Isle of Man presented an example of family care-giver experiences of integrated care for a rare disease. She highlighted the large number of encounters and services that a person and their carers come into contact with during the last 18 months of life- 34 encounters with health and social care providers, private and third sector providers. She stressed the importance of having long term coordinator to act as the main safety valve. She also noted respite is essential.
Nieves Ehrenberg is a Senior Researcher at the International Foundation for Integrated Care (IFIC)