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Portugal needs to revolutionise end-of-life care

2020; Elsevier BV; Volume: 395; Issue: 10223 Linguagem: Inglês

10.1016/s0140-6736(19)32969-1

1474-547X

Bárbara Gomes, Maja de Brito, Ana Lacerda, Duarte Soares,

Family and Patient Care in Intensive Care Units

End-of-life care is one of the most neglected areas in Portugal's health system.1Knaul FM Farmer PE Krakauer EL et al.Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report.Lancet. 2018; 391: 1391-1454Summary Full Text Full Text PDF PubMed Scopus (526) Google Scholar In adults and children, deaths caused by conditions requiring palliative care are rising,2Gomes B Pinheiro MJ Lopes S et al.Risk factors for hospital death in conditions needing palliative care: nationwide population-based death certificate study.Palliat Med. 2018; 32: 891-901Crossref PubMed Scopus (22) Google Scholar, 3Forjaz de Lacerda A Gomes B Trends in cause and place of death for children in Portugal (a European country with no paediatric palliative care) during 1987–2011: a population-based study.BMC Pediatr. 2017; 17: 215Crossref PubMed Scopus (19) Google Scholar and this aligns with global projections.4Sleeman KE de Brito M Etkind S et al.The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions.Lancet Glob Health. 2019; 7: e883-e892Summary Full Text Full Text PDF PubMed Scopus (259) Google Scholar Portugal has the fourth highest aged population in the world, and is predicted to have the third by 2050.5Department of Economic and Social AffairsWorld population ageing 2017: highlights. United Nations, New York, NY2017Google Scholar There is a continuing trend towards dying in hospital,2Gomes B Pinheiro MJ Lopes S et al.Risk factors for hospital death in conditions needing palliative care: nationwide population-based death certificate study.Palliat Med. 2018; 32: 891-901Crossref PubMed Scopus (22) Google Scholar, 3Forjaz de Lacerda A Gomes B Trends in cause and place of death for children in Portugal (a European country with no paediatric palliative care) during 1987–2011: a population-based study.BMC Pediatr. 2017; 17: 215Crossref PubMed Scopus (19) Google Scholar which is often against people's preferences.6Gomes B Higginson IJ Calanzani N et al.Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.Ann Oncol. 2012; 23: 2006-2015Summary Full Text Full Text PDF PubMed Scopus (362) Google Scholar Falling investment in end-of-life care will diminish the chances of reversing this trend and affect the conditions in which people die in hospitals. The expansion of the private sector is also seen in end-of-life care, and although this means more people might access palliative care, it also increases inequality. A Copernican revolution in management is needed to establish how we provide end-of-life care, to ensure palliative care is accessible for all7WHOStrengthening of palliative care as a component of comprehensive care throughout the life course. World Health Organization, Geneva2014Google Scholar and that the health system adapts to its users, rather than the other way around. The re-elected government in Portugal must take this opportunity to ensure such change happens. Investment is needed in a national palliative care strategy that already exists, but which fails to achieve goals because of a lack of financial investment. A policy approved by Parliament in July, 2019, that formalises the role of informal carers must be put into practice. Partnerships with third sector and non-profit initiatives will also need to be nurtured, such as the la Caixa Foundation programme for enhancing comprehensive care for patients with advanced diseases in Portugal. This programme, called Humaniza, is funding grassroots projects led by associations of patients and professionals, fellowships to train palliative care doctors, and psychosocial support teams on the mainland and islands of Portugal. Only through concerted action will a societal transformation towards more compassionate care occur. BG is a scientific advisor for the la Caixa Foundation programme for enhancing comprehensive care for patients with advanced diseases in Portugal. DS and AFdL are president and vice-president of the Portuguese Association for Palliative Care, respectively. MdB declares no competing interests. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission reportIn agonising, crippling pain from lung cancer, Mr S came to the palliative care service in Calicut, Kerala, from an adjoining district a couple of hours away by bus. His body language revealed the depth of the suffering. We put Mr S on morphine, among other things. A couple of hours later, he surveyed himself with disbelief. He had neither hoped nor conceived of the possibility that this kind of relief was possible. Mr S returned the next month. Yet, common tragedy befell patient and caregivers in the form of a stock-out of morphine. Full-Text PDF