End of life care is complex but aims to provide care and comfort
A new study from Karolinska Institute and Umeå University finds that non-pharmacological care in the last days of a patient’s life, known as palliative care, is not as simplistic as one may think.
Palliative care is multifaceted and complex, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. In particular, the researchers find, is a safe and pleasing environment, bodily care and physical contact, and the rituals surrounding death and dying.
"End-of-life care is about providing fundamental human needs," says Olav Lindqvist, researcher at Medical Management Centre, Karolinska Institute. "But in this study, we found that providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care."
The study, recently published in the journal PLoS Medicine, is part of a recently completed three-year international project, OPCARE9, which was funded by the EU's Seventh Framework Programme. A main question involved what health workers actually do in the final days of a patient's other than providing medication. Olav Lindqvist, who received his doctorate from Umeå University in 2007, is the lead author and has collaborated on the research with Professor Birgit H. Rasmussen, Department of Nursing, Umeå University.
The study included 16 palliative care centres in nine countries. The staff was asked to write statements what they specifically did. The reporting applied to all new, non-pharmacological care activities for 3-4 weeks and the analysis in the article is based on 914 reported individual statements. Approximately 80 per cent came from registered nurses or other nursing staff, with another 15 per cent from doctors and about five per cent from other professionals, including volunteers. The study identifies three key areas in palliative care that are not always given attention: bodily care and contact, creating an aesthetic, safe and pleasant environment, and the rituals surrounding death and dying.
"The health care providers described the various forms of communication with patients and families, from advice to communication through nonverbal presence and physical contact," says Olav Lindqvist. "Rituals surrounding death and dying were not only related to spiritual/religious issues, but also included more subtle existential, legal, and professional rituals."
The study shows that this form of care is based on a series of complex and sophisticated reactions from the caregiver's side. Decisions not only about what is to be done or not done, but also how, why, when, and for whom it is done. This differs from the current conception of palliative care as "basic".
"Mouth care is an example of an important part in the care of a dying person," explains Olav Lindqvist. "It is more likely for the dying person to feel better and possibly ease contact with relatives, because it is difficult to sit near someone who has bad mouth odor. But if the patient bites down and refuses oral care, we get an ethical dilemma that caregivers have to deal with. Oral hygiene can also give families an opportunity to participate in the care of a dying relative, it is something that health professionals need to take into account."
The nine countries included in the study are: Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, United Kingdom, Argentina and New Zealand. Work on the study was conducted at Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institute, and at the Department of Nursing, Umeå University.
Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study, O Lindqvist, C Tishelman, C Lundh Hagelin, JB Clark, ML Daud, A Dickman, F Domeisen Benedetti, M Galushko, U Lunder, G Lundquist, G Miccinesi, SB Sauter, CJ Fürst, BH Rasmussen, PLoS Medicine, online 14 February 2012, doi: 10.1371/journal.pmed.1001173 Link to the article