Hostname: page-component-cd9895bd7-mkpzs Total loading time: 0 Render date: 2024-12-26T15:34:09.676Z Has data issue: false hasContentIssue false
  • English
  • Français

Patients' participation in end-of-life care: Relations to different variables as documented in the patients' records

Published online by Cambridge University Press:  27 September 2010

Irma Lindström ,
Fannie Gaston-Johansson  and
Ella Danielson
Irma Lindström*
Affiliation:
The Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden
Fannie Gaston-Johansson
Affiliation:
Johns Hopkins University, School of Nursing, Baltimore, Maryland
Ella Danielson
Affiliation:
The Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden
*
Address correspondence and reprint requests to: Irma Lindström, The Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Box 457, SE 40530, Gothenburg, Sweden. E-mail: irma.lindstrom@gu.se
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Patients' participation in care is crucial for assuring patients a high quality of care based on values such as autonomy. The patients are supposed to be actively involved in care and treatment, even though these situations are complex, as in the context of end-of-life-care. The aim in this study was to identify demographic and health-related variables‘ relation to patients’ participation during the last three months in life as documented in patients' records.

Method:

The population in the present study consists of 229 patients from 49 municipalities in a county in Sweden. Data were collected from all available documentation about deceased patients who were ≥18 years of age at the time of death and who had received healthcare services during the last 3 months of their life.

Results:

This article demonstrates patients' participation in end-of-life care as it was noted in the patients' documentation. Demographic variables such as age, gender, and residence did not differ between those who participated and those who did not. Patients with dementia and disorientation were separated from those who were not disoriented. There was no information about the wishes of the patients with dementia and disorientation and they were not described as participating in care and treatment. Cognitive intact patients were participating significant more often. These patients had also more symptom describes in the records. These results can indicate that a patient's participation depends upon either the patient's cognitive capability or the healthcare professionals' competence to communicate and provide adequate documentation regarding patients' participation at end-of-life. The documentation about the participation of patients with cognitive dysfunction is poor and needs further investigation, to achieve the goal of dignified end-of-life care for all patients.

Significance of results:

The results of the presents study call attention to the importance of finding innovative solutions to make patients with cognitive dysfunction involved in their care and treatment at end-of-life. Improvement of documentation showing patients' involvement in care is necessary, as is a discussion of how healthcare professionals can assure patients a high quality of care at end-of-life even if patients voices are not heard.

Keywords

DocumentationDisorientationEnd-of-life careParticipationPatients'symptom/problem
Type
Original Articles
Information
Palliative & Supportive Care , Volume 8 , Issue 3 , September 2010 , pp. 247 - 253
Copyright
Copyright © Cambridge University Press 2010

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Hälso- och sjukvårdslagen(SFS 1982:763). [The Health and Medical Service Act] Ministry of Health and Social Affairs in Sweden, 1982 [in Swedish].Google Scholar
Patientjournallagen(SFS 1993:20). [Regulations and advisory instructions on the Patient Record Art] Ministry of Health and Social Affairs in Sweden, 1993 [in Swedish].Google Scholar
Aminoff, B.Z. & Adunsky, A. (2005). Dying dementia patients: Too much suffering, too little palliation. American Journal of Hospice & Palliative care, 22, 344–348.CrossRefGoogle ScholarPubMed
Bottorff, J.L., Steele, R., Davies, B., et al. (2000). Facilitating day-to-day decision making in palliative care. Cancer Nursing, 23, 141–150.CrossRefGoogle ScholarPubMed
Black, K. & Osman, H. (2005) Concerned about client decision-making capacity? Considerations for practice. Care Management Journal, 6, 50–51.Google ScholarPubMed
Cahill, J. (1998). Patient participation: A review of the literature. Journal of Clinical Nursing, 7, 119–128.Google Scholar
Chochinov, H.M. (2006). Dying, dignity, and new horizons in palliative end-of-life care. Cancer Journal for Clinicians, 56, 84–105.CrossRefGoogle ScholarPubMed
Donaldson, M.S. & Field, M.J. (1998). Measuring quality of care at the end of life. Archives of Internal Medicine, 158, 121–128.CrossRefGoogle ScholarPubMed
Eldh, A.C., Ehnfors, M. & Ekman, I. (2004). The phenomena of participation and non-participation in health care: Experiences of patients attending a nurse-led clinic for chronic heart failure. Archives of Internal Medicine, 3, 239–246.Google Scholar
Eldh, A.C., Ekman, I. & Ehnfors, M. (2006). Conditions for patient participation and non-participation in health care. Nursing Ethics, 13, 503–514.Google Scholar
Hall, P., Schroder, C. & Weaver, L. (2002). The last 48 hours of life in long-term care: A focused chart audit. Journal of the American Geriatrics Society, 50, 501–506.Google Scholar
Hegarty, M., Hammond, L., Parish, K., et al. (2005). Nursing documentation: Non-physical dimensions of end-of-life care in acute wards. International Journal of Palliative Nursing, 11, 632–636.Google Scholar
Holmerova, I., Juraskova, B., Kalvach, Z., et al. (2007). Dignity and palliative care in dementia. Journal of Nutrition, Health & Aging, 11, 489–494.Google Scholar
Hosmer, D.W., Hosmer, T., Le Cessie, S., et al. (1997). A comparison of goodness-of-fit tests for the logistic regression model. Statistics in Medicine, 16, 965–980.Google Scholar
Hudson, P.A.S., Krisjanson, L.J. & Quinn, K. (2005). Minimising gate-keeping in palliative care research. European Journal of Palliative Care, 12, 165–169.Google Scholar
Ingleton, C. & Seymour, J.E. (2001). Analysing qualitative data: Examples from two studies of end-of-life care. International Journal of Palliative Nursing, 7, 227–233.CrossRefGoogle ScholarPubMed
Kirchhoff, K.T., Anumandla, P.R., Foth, K.T., et al. (2004). Documentation on withdrawal of life support in adult patients in the intensive care unit. American Journal of Critical Care, 13, 328–334.CrossRefGoogle ScholarPubMed
Klinkenberg, M., Willems, D.L., van der Wal, G., et al. (2004). Symptom burden in the last week of life. Journal of Pain and Symptom Management, 27, 5–13.CrossRefGoogle ScholarPubMed
Mahon, M.M. & Sorrell, J.M. (2008). Palliative care for people with Alzheimer's disease. Nursing Philosophy, 9, 110–120.Google Scholar
Nolan, M.T., Hughes, M., Narendra, D.P., et al. (2005). When patients lack capacity: The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions. Journal of Pain and Symptom Management, 30, 342–353.CrossRefGoogle ScholarPubMed
Nordgren, L. & Sorensen, S. (2003). Symptoms experienced in the last six months of life in patients with end-stage heart failure. European Journal of Cardiovascular Nursing, 2, 213–217.Google Scholar
Oi-Ling, K., Man-Wah, D.T. & Kam-Hung, D.N. (2005). Symptom distress as rated by advanced cancer patients, caregivers and physicians in the last week of life. Palliative Medicine, 19, 228–233.Google Scholar
Randers, I. & Mattiasson, A.C. (2004). Autonomy and integrity: Upholding older adult patients' dignity. Journal of Advanced Nursing, 45, 63–71.CrossRefGoogle ScholarPubMed
Sahlberg-Blom, E., Ternestedt, B.M. & Johansson, J.E. (2000). Patient participation in decision making at the end of life as seen by a close relative. Nursing Ethics, 7, 296–313.CrossRefGoogle ScholarPubMed
Sainio, C., Lauri, S. & Eriksson, E. (2001). Cancer patients' views and experiences of participation in care and decision making. Nursing Ethics, 8, 97–113.Google Scholar
Schroder, A., Ahlstrom, G. & Larsson, B.W. (2006). Patients' perceptions of the concept of the quality of care in the psychiatric setting: A phenomenographic study. Journal of Clinical Nursing, 15, 93–102.CrossRefGoogle ScholarPubMed
Singer, P.A., Martin, D.K. & Kelner, M. (1999). Quality end-of-life care: patients' perspectives. Journal of the American Medical Association, 281, 163–168.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Medical Association, 284, 2476–2482.Google Scholar
Stewart, A.L., Teno, J., Patrick, D.L., et al. (1999). The concept of quality of life of dying persons in the context of health care. Journal of Pain and Symptom Management, 17, 93–108.Google Scholar
van Thiel, G.J. & van Delden, J.J. (2001). The principle of respect for autonomy in the care of nursing home residents. Nursing Ethics, 8, 419–431.Google Scholar
World Health Organization. (2001). International Classification of Function, Disability and Health (ICF). Geneva: World Health Organization.Google Scholar
World Medical Association Declaration of Helsinki (2004). Ethical principles for medical research involving human subjects. International Journal of Bioethics, 15, 124–129.Google Scholar