Chapter 9: The role of families, family caregivers and nurses

Emerging themes

Involving the family caregiver in the management of in-patients

In an important but underpowered trial of education of family caregivers, 49 care-giver/patient dyads were randomly allocated to receiving an educational programme plus a formalised agreement between the caregivers and nursing staff on key behavioural changes in patients (Li, Melnyk, McCann et al (2003). “Acute confusion” was documented less often by the caregivers in the intervention than control group.

Distress in bystanders as opposed to sufferers?

In a careful study of delirium in cancer patients on nurses and family caregivers Breibart & colleagues have quantified the distress felt by these groups, and related this to the phenomenology- particularly delusions and perceptual abnormalities (2002). They also found that, mercifully, later recall of delirium is inversely related to its severity. Distress in the patient is remarkable by its absence from a self-case-study of delirium by a retired British psychiatrist (Crammer (2002)- perplexity was the most dominant affect, even when very alarming cognitions were experienced. The patient died the same year his account was published. A careful bedside study of 50 delirious patients using qualitative methods found high rates of post-recovery recall, and suggested that the meanings of the ideas expressed during the state might be helpfully considered by staff (Andersson, Hallberg, Norberg et al (2002). The experience of nursing patients with delirium has now been reported by Andersson, Hallberg, & Edberg (2003) including some graphic accounts of the subtlety of change in patients (“She had a darker look, she was aggressive and you could see it in her eyes. Her gaze was dark, black, more watery, more tense”). Accounts of how delirious patients respond to clear boundaries are also given:

Then I said, ‘It doesn’t matter what you think or what you say, because you must lie down now or you’ll get really sick.’ He said ‘bloody hell’ and he swore and was really angry. Then I said, ‘You can swear as much as you want for I’ll swear back. Now you must lie down because you’re not well, I can see by the way you look,’ I said resolutely, almost angrily. Then he became quiet and I was even able to take his blood pressure.”

The strains put on nurses caring for people with delirium is apparent from this important work, but whether a rating scale is for this will prove useful (Milisen, Cremers, Foreman et al (2004) remains to be seen.

Whole-system changes to nursing practice

Balas, Gale, & Kagan (2004) have introduced the idea that doulas (unqualified assistants similar to those used in childbirth) could be very helpful in managing intensive care unit delirium. She lists the several domains of care in which such a person might be beneficial, and shows how the usual nursing and medical procedures leave scope for many common sense and humane interventions. As has the suggested elsewhere, the incidence, prevalence and complications of delirium are a manifestation of a whole system failure, and the role of the doulas may have become unfortunately vital given the withdrawal of most qualified nurses from a holistic approach to patient care.

Footnotes

Systemic approaches to the care of older people for whom multiple moves within hospitals are deliriogenic, quite apart from the extra toxicity cause by medication errors at each transfer, are reviewed by Gillick (2002).

The British Association of Critical Care Nurses has issued guidance on the use of restraint in adult critical care units (intensive care units) (Bray, Hill, Robson et al (2004). They do not confine their advice to physical restraints but include pharmacological and psychological methods. Their recommendations seem very reasonable and sensible, but interestingly they do not tackle the problem of capacity and consent in fluctuating states like delirium.

Reference List Chapter 9

 

Andersson, E. M., Hallberg, I. R., and Edberg, A. K. (2003) Nurses' experiences of the encounter with elderly patients in acute confusional state in orthopaedic care. International Journal of Nursing Studies, 40, (4) 437-448 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12667520&dopt=Abstract

Andersson, E. M., Hallberg, I. R., Norberg, A., et al (2002) The meaning of acute confusional state from the perspective of elderly patients. International Journal of Geriatric Psychiatry, 17, (7) 652-663 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12112164&dopt=Abstract

Balas, M. C., Gale, M., and Kagan, S. H. (2004) Delirium doulas: an innovative approach to enhance care for critically ill older adults. Critical Care Nurse, 24, (4) 36-46 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15494623&query_hl=8

Bray, K., Hill, K., Robson, W., et al (2004) British Association of Critical Care Nurses position statement on the use of restraint in adult critical care units. Nursing in Critical Care, 9, (5) 199-212 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15462118&query_hl=31

Breitbart, W., Gibson, C., and Tremblay, A. (2002) The delirium experience: delirium recall and delirium-related distress in hospitalized patients with cancer, their spouses/caregivers, and their nurses. Psychosomatics, 43, (3) 183-194 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12075033&dopt=Abstract

Crammer, J. L. (2002) Subjective experience of a confusional state. British Journal of Psychiatry, 180, 71-75 http://www.ncbi.nlm.nih.gov//entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11772855

Gillick, M. R. (2002) Do we need to create geriatric hospitals? Journal of the American Geriatrics Society, 50, (1) 174-177 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12028264&dopt=Abstract

Li, Hong, Melnyk, Bernadette Mazurek, McCann, Robert, et al (2003) Creating Avenues for Relative Empowerment (CARE): A pilot test of an intervention to improve outcomes of hospitalized elders and family caregivers. Research in Nursing & Health, 26, (4) 284-299 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12884417

Milisen, K., Cremers, S., Foreman, M. D., et al (2004) The Strain of Care for Delirium Index: a new instrument to assess nurses' strain in caring for patients with delirium. International Journal of Nursing Studies, 41, (7) 775-783 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15288800&query_hl=121