Palliative Care workshop at Fatima church

Despite all the advances in modern medicine, the world’s mortality remains 100 per cent. Yet we inhabit a death denying society, where prolongation of life is expected and conversations around death and dying are often discouraged because they represent negativity, bad karma, or a lack of faith. A group of recent visitors to our shores brought a radically different message.

From April 27 to May 1, a small group of local advocates welcomed world renowned Palliative Care experts for a series of workshops on community engagement in Palliative Care. The workshops were held at Our Lady of Fatima RC Church, Curepe, and were attended daily by 35–50 participants, health professionals as well as lay persons.

Dr Suresh Kumar

These experts were Dr Suresh Kumar and Saif Mohammed of the Institute of Palliative Medicine (IPM), India, and Dr Heather Richardson, Senior Consultant to the Professional Learning Team at St Christopher’s Hospice, London.

Palliative Care is defined by the World Health Organization as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial, or spiritual.” Palliative Care is, at its core, a response to human suffering.

This series of workshops was one of many on the IPM’s global mission. A central message was that dying is not a medical condition, but rather a social and a human one, with a medical component.

They cited the ‘95 % Rule’ that people in the last phase of their lives spend only 5 per cent of time with health providers or in health institutions. The other 95 per cent of the time, care is provided by family, friends, and the informal network of the wider community. This community network is crucial to the wellbeing of the individual patient and impacts where and how we live and die.

Many of us hope for a sudden death, one free of suffering and dependence, where we are not a burden to those whom we love. The truth is disappointing. Contrary to our hopes, only 10 to 15 per cent of a population dies suddenly. The rest will experience varying rates of decline from chronic ailments such as heart disease, diabetes, kidney disease, cancer, dementia, and frailty, among others.

What this means is that 85 to 90 per cent of us will need care in the future. And if we are lucky enough not to need care, we will be called upon to provide care. How many of us have the knowledge and skills to do this well?

Do we know how to change a bedsheet under a bedbound patient? How to care for a wound or to transfer a person safely from bed to chair? Do we know how to safely feed someone at risk of aspiration or choking? Or how to respond when a loved one says they want to plan their funeral, when some admit to a fear of death or want to end their life due to unbearable suffering?

Dr Heather Richardson

The good news is that the ability to handle these scenarios can be taught and learnt. But when caregiving is thrust upon us, we are often caught in a tailspin of physical exhaustion and emotional turmoil and there is no time to learn the necessary skills.

The IPM team proposes a new perspective: recognising caregiving as a life skill akin to cooking or learning to drive. Something that every single person should learn before they become a caregiver.

With a community and a country empowered with competence in caregiving, perhaps we can hope for better quality care in family homes, fewer visits to the emergency room, less caregiver burnout, cost savings for families, and a less overburdened health system.

The action plan coming out of the IPM workshops included revision of an existing IPM caregiver manual by a local taskforce, to ensure that it is culturally appropriate. This will be followed by training of the first cohort of trainers in caregiver skills, communication techniques, and bereavement companionship.

The goal will be implementation and roll-out of a continuous caregiver training programme that reaches people where they are—in homes, places of worship, schools, businesses.

The power to change end-of-life experiences lies within the community; within our already existing informal networks of care. It lies within each one of us, who will one day be called upon to provide care.

For more information about the work of the IPM, visit www.instituteofpalliativemedicine.org/

Connect with the Palliative Care Working Group at compassionatefuturestt@gmail.com —Karen Cox-Seignoret