Haiti community palliative care project improves the lives of patients and their loved ones

The HUEH Pain Unit has been working to bring palliative care into the community in Haiti. The need for palliative care in Haiti is vital as the country is lacking resource and this team knows that this type of care will not only ease the patient but also their family and care givers.

Dr Regine Roche (left in photo) from the HUEH Pain Unit explains – In October 2019, the International Association for Hospice and Palliative Care (IAHPC) in collaboration with the Lancet Commission on Global Access to Palliative Care and Pain Relief (GAPCPR), the Institute for Advanced Studies of the Americas at the University of Miami (UMIA) and the Mexican Health Foundation (FUNSALUD), released a platform for calculating severe health-related suffering and palliative care need by income and geographic region for a large number of countries.[1]

The extent of human suffering uncovered by this study demonstrated the enormous need for palliative care around the world. 80% of this need is in low and middle-income countries where access to palliative care, even immediate-release oral morphine for pain relief, is extremely limited.

In 2014, the 194 member states of the World Health Organization (WHO) adopted a resolution on strengthening palliative care. This global commitment insisted on the need to establish national policies, train health professionals, support caregivers, review regulations concerning access to opioids and promote partnerships. All these interventions aim to strengthen the integration of palliative care at different levels of care, at the level of primary care. [2,3]

Even now, 50 years since the first hospice opened, St Christopher’s in the UK, access to palliative care as a basic human right is far from a reality.

Haiti is a developing country with an estimated human development index of 0.498. The evolution of the Haitian population, which goes hand in hand with the increase in serious and progressive chronic pathologies, has led in recent years to a considerable increase in the need for palliative care. According to the estimate of this platform, approximately 114,000 people require palliative care in Haiti.

It is increasingly necessary to know how to identify palliative situations, to know how to anticipate the needs of people in those situations, and to be able to provide appropriate responses.

Haiti is lacking in health centers and nurses (in 2017, the country had 23,344 health professionals. For 10,000 inhabitants, there were 1.4 doctors and 1.8 nurses in the public sector and 1.02 doctor and 2.1 nurses in the private sector) and subject to cultural and religious issues, it is important to recognize the Haitian patients in their singularity by offering them the most beneficial palliative care This care should be specially adapted to their individual needs. Care that is part of the culture, beliefs and economy of Haitian society, and that takes into account the essential role of family caregivers with end-of-life patients.[4]

Strengthening the home care of patients at the end of their life is necessary and also involves valuing caregivers.

In Haiti, there is no formal or ongoing training in palliative care, nor a national program or protocol that dictates guidelines for the care of these patients.

Strengthening home care (more than 90% of palliative care patients die at home) has enabled us to include relatives in patient care.

This project, implemented through the Pain Unit of the HUEH (State University Hospital of Haiti) from 2015 to 2019, made it possible to develop innovations in palliative care. Of the 129 patients receiving palliative care, more than 25% were followed at home.

With the limited number of health professionals in the communities; the use of follow-up sheets (figure 1) and the information booklet (figure 2) by caregivers, has improved the end of life of their loved ones [3].

To make this project a reality, we carried out training for health professionals (doctors, nurses) and community health workers, and gave education sessions for caregivers.

Given budget constraints, health priorities and the fact that most patients die at home, empowering caregivers and community health workers through good training appears to be the most realistic way to achieve the goal; to make palliative care accessible within a reasonable time in Haiti.

FIGURE 1 : Patient follow -up sheet

Figure 2: Booklet for family caregivers of palliative care patients, Pain Unit, Pain without Borders (DSF), 2019

Booklet for family caregivers

REFERENCES

Global digital platform to assess severe illness suffering and palliative care needs of IAHPC and Lancet Commission (LCGAPR) in collaboration with UMIA and FUNSALUD