Training communities to be compassionate and contribute: how an expert from Spain is making it happen
Spanish palliative care physician Dr Emilio Herrera is a keynote speaker at Palliative Care Victoria’s conference this week. He gives Palliative Matters an early insight into how he is reinvigorating communities’ capacity for caring at the end of life.
Dr Emilio Herrera is working to create a very different kind of world. It’s a world where people don’t see death as a failure of the medical profession, but rather as the logical conclusion of having been born and lived. It’s a world where people don’t waste time looking for miracles when a loved one is dying at the end of a long-term chronic illness. Instead, they achieve the level of acceptance required to look ahead and plan to meet their loved one’s future needs. And they focus on making the most of any precious time remaining, cherishing the privilege of caring for their loved one emotionally and physically, with the support of their broader community, until the end.
Dr Herrera, a Spanish palliative care physician, is midway through explaining the ambitious, international project designed to achieve all of this when he laughs. It’s as though speaking out loud has enabled him to hear an absurdity in what he is proposing. It’s so simple and obvious; why does it require a model and an international movement? “Why on earth has nobody done this before?” he asks, incredulous.
What he’s proposing is kind of obvious and the basic concept isn’t new. But the way he’s going about it has achieved international applause, which why he has been invited to leave his Spanish summer to present at Palliative Care Victoria’s conference in Melbourne this week. His influence is being felt in Colombia, where “we are getting amazing results” and he is supporting groups in Brazil, Argentina and Mexico. Last year he received the Palliative Care Policy Development Award 2015 from the European Journal of Palliative Care for his ambitious, international project, which he has led as president of the NewHealth Foundation.
In July 2014 the not-for-profit NewHealth Foundation launched the Todos Contigo program, which translates to “We Are All With You”. It is in keeping with the concept of compassionate communities, which is gaining traction in the UK and elsewhere, and is based on the renowned Compassionate City Charter developed by medical and public health sociologist Professor Allan Kellehear. The charter describes a compassionate city as “a community that recognises that care for one another at times of health crisis and personal loss is not simply a task solely for health and social services but is everyone’s responsibility.”
“The most important thing is to be able to understand it is a privilege, every second of helping others when they need it.”
Dr Herrera believes that people’s needs at the end of life are best met at the community level, but society needs to be taught that it is a shared responsibility and not solely that of health care professionals. He says since 2015 a pilot program has been “sensitising and awakening [the Spanish city of] Seville to begin working with this project”, training 2000 people to provide or facilitate care. Next year, further implementation will see 500 people who are dying supported by 1500 community members. “Our plan is to cover the entire city in the next few years. That is almost a million people.”
Dr Herrera says community training, delivered in short courses or workshops, covers what palliative care does, where these resources can be found and when they should be accessed. It covers patient rights, the needs and fears of people at the end of life and the evolution of illness. “For example, that it is normal to have an increase in personal dependency over time and not to be taking a huge amount of food,” Dr Herrera says. “We try to prepare them for the grief also.”
It also covers practical skills, such as being able to use a wheelchair and moving a dependent person safely around the house. But it also covers emotional support, teaching people how to relieve suffering on a daily basis by knowing when to respect silence, and how to “really speak with terminal patients, what to say and how to support people… how to be a companion properly”.
“The most important thing here is not only the technique of how to do practical things,” Dr Herrera says.
“The most important thing is to be able to understand it is a privilege, every second of helping others when they need it. People in that moment really realise that it makes sense as human beings. And from this moment it is not only about how to help others, but how important it is for care givers to be helping others as a natural part of being a human being.”
His concept also applies to people who will die in residential aged care facilities. Here too he says families and the community need to play a bigger role.
“We conducted a study five years ago of 900 people in residential beds and discovered more than 42% had depression and more than 55% felt isolated despite living in very excellent places because they felt their relatives and friends had forgotten them,” he says.
Dr Herrera’s model acknowledges that some patients with complex needs will need long-term hospital care. Those likely to live the rest of their lives more comfortably in their own home or another long-term care facility are identified by palliative care professionals or other hospital doctors, in consultation with a social worker or district nurse, potentially employed by a local council. They gain insights from a trained facilitator, who understands the person’s social network in detail, in order to arrive at a plan which harnesses support from both the health care sector and the community.
The facilitator takes into account the patient’s needs and wishes, and assesses the needs and capabilities of their network of family, neighbours and friends. Before the patient is discharged from hospital, they identify and organise any training or equipment the network needs to be effective. If patients are socially isolated, facilitators find appropriately trained volunteers to step in. Dr Herrera says it’s about “preparing the right place for the right patient”.
“This is person-centred integrated care,” Dr Herrera says, likening the model to a series of concentric circles. In the centre is the person at the end of life, surrounded first by friends, personal caregivers and volunteers. The next circle includes public and private health services.
“Usually the health care sector has been planning to be in the centre, so it is a different point of view,” he says. “The centre is not the palliative care team. It is the patient, their neighbours and community and we have to then provide the benefit of professional services they need, depending on the needs of the patient. It’s an important nuance. It is a really different perspective on how we really should work.”
He says health professionals typically focus on “symptom control and the evolution of the illness” but the vast majority of the patient’s live is spent outside of medical consultations.
“We, the health care professionals, think we are the most important part of taking care of the patient,” Dr Herrera says.
“I think we need to be a little bit more humble and understand we are human beings before we are doctors. It is a privilege that we can provide relief through science, but more than that we can provide love and understanding of the natural dignity of human beings, and this is important.”
Dr Herrera knows in advance that the secret to the project’s success is involving enough local stakeholders with a common mission. He says a local steering group has been formed with some of Seville’s main companies, the mayor and council members, and representatives from schools and university. They’ll be contributing to the project’s financial sustainability and monitoring its social impact.
It’s relatively early days, and a daunting task, but some of the most positive signs of success so far have come from school children. About 12 schools have been involved, exposing 1200 students to talks on death and dying and how children can support their elderly relatives when they die.
Dr Herrera says children are less likely to see death and dying as taboo subjects, which leaves them well equipped to pass their learning on to the broader community. He treasures a picture drawn by a 10-year-old workshop participant. She has drawn herself sitting quietly and thinking, near her grandmother who is lying on a bed, looking very ill.
The girl wrote that are many things children can do to support a grandparent while they were dying. “We can keep this relative company and we can give them our love; that is more important than only giving medicines. We can make them feel better and console them, so they don’t feel isolated, because they know they are important to us.”
Dr Herrera says the girl understands that although her grandmother is dying, she is still alive.
“She is trying to express in that picture that every instant, every moment and second, is important until the moment she dies,” he says. “I think we are beginning to make a difference.”
Join @Palliverse and @PCACEO for a tweet chat on compassionate communities this evening (Wednesday 27 July). For times and topics click here.
- Frail elderly put new pressure on prisons to provide palliative care
- One third of elderly patients receive futile treatment before they die
- Symbolic works created with ink-filled syringe capture life and offer therapy
- The most intimate thing I’ve done in my life: Kylie’s story
- Vicarious trauma: a young nurse shares her experience