Complexities in caregiving at the end of life

Faced with the inevitability of death, we all wish for good caregiving during the final stage of our lives. A new study from Karolinska Institutet and Umeå University shows that non-pharmacological caregiving at the end of life in specialised palliative care is not as basic as one might believe but is based on complex professional decisions that weave physical, psychosocial and existential dimensions into a functional whole.

The researchers have found that particularly important aspects of palliative care are an aesthetically pleasing, safe and comfortable environment, bodily care and contact from another person and dying-related rituals.

"To be sure, palliative care is all about satisfying fundamental human needs, but what we found in our study was that it entails so much more than one might at first assume," says Olav Lindqvist, researcher at the Medical Management Centre at Karolinska Institutet. "If we are to further develop palliative care, we must learn more about this type of daily caregiving and tease out its nuances."
 
The study, which is published in PLoS Medicine, is part of a recently concluded three-year international project called OPCARE9, which was financed through the EU's Seventh Framework Programme.

Its aim was to identify variations in non-pharmacological activities carried out as part of specialised palliative caregiving and to answer the question: What do caregivers actually do during the final days of a patient's life apart from administer drugs?
 
The study included 16 palliative outpatient and inpatient clinics in nine countries. The staff at each clinic was asked to record non-pharmacological activities that were carried out during the final days of a patien's life, for three to four weeks. The analysis was based on 914 such records, 80 per cent of which were from nursing staff, 15 per cent from doctors and 5 per cent from other staff categories, including volunteers.

The study indicates three key areas that are sometimes overlooked in palliative care, namely bodily care and contact, a secure, aesthetic and comfortable environment, and death-related rituals.
 
"The caregivers described different kinds of communication with patients and relatives, from the giving of advice to communication through non-verbal, physical contact," says Dr Lindqvist. "Rituals surrounding dying and death were not only spiritual or religious but also more subtly existential, legal and professional. One field that has been largely ignored by research is sensory aspects of the caring environment, both at home and in in-patient settings."
 
The study also shows that non-pharmacological palliative care is based on a number of complex and sophisticated decisions on the part of the caregiver regarding not only what can be done or should not be done, but also when, how and why to whom. This differs from the traditional understanding of non-pharmacological palliative care as 'basic'.
 
"A good example of this is oral care, which is an important aspect of the care given to a dying person," says Dr Lindqvist. "It's likely to make the dying person feel better and could ease contact with relatives since it becomes difficult to be close when someone's breath smells strongly. But what happens if the patient refuses oral care? The nursing staff than has to deal with a complicated ethical dilemma. Oral care can also give relatives an opportunity to participate in the caring of a dying relative, and if they do this, it's something that the caregivers must be able to take into consideration."
 
The nine countries included in the study were Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK, Argentina and New Zealand. The analysis was carried out at the Medical Management Centre, part of the Department of Learning, Informatics, Management and Ethics at Karolinska Institutet and the Department of Nursing at Umeå University. Dr Lindqvist is also a researcher at the R&D unit at Stockholms Sjukhem Foundation.