Providing for fundamental human needs to people who are close to death is complex and sophisticated, but ultimately involves the integration of physical, psychological, social and spiritual elements, according to a study published in this week's PLoS Medicine by a group of international researchers.
End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo. This study involved identifying the variety of care-giving activities (other than provision of medication) performed by health workers in the last days and hours of life for patients with cancer in palliative care settings in 9 countriesGermany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK, and also Argentina and New Zealand. The researchers found that the greatest number of activities involved care-giving for an individual carried out through contact with his or her body, such as attending to diverse bodily needs while maintaining comfort and dignity. Health workers also reported that important elements of care-giving close to death involved close communication with the individual and their family, together with creating an attractive, safe and pleasing environment. Professionals also reported that just being present was important, especially when the patient was close to death.
The researchers identified a number of areas needing further investigation, such as the ways in which a dying person's sensory and general environment can be improved, and suggest that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity in providing care during the last days of life, which should be also beneficial for clinical practice, teaching and research.
The authors say: "In these data, an underlying feature of the pattern of palliative care practice appears to be an effort to provide personalized and compassionate end-of-life care by maintaining and supporting links with the individual's everyday life."
They add: "This adaptation is accomplished by using knowledge about and respect for the person as an individual with a life history lived in a particular context, that is the person is not viewed only as a dying patient."
Lindqvist O, Tishelman C, Lundh Hagelin C, Clark JB, Daud ML, et al. (2012) Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study. PLoS Med 9(2): e1001173. doi:10.1371/journal.pmed.1001173