Predictors for Development of Pressure Ulcer in End-of-Life Care: A National Quality Register Study

Background: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. Aim: To establish, test and manage a national quality register for end-of-life care. Design: Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online. Setting: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. Results: The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths. Conclusions: We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.

Download Full-text

Information of Imminent Death or Not: Does It Make a Difference?

Journal of Clinical Oncology ◽

10.1200/jco.2011.34.6247 ◽

2011 ◽

Vol 29 (29) ◽

pp. 3927-3931 ◽

Cited By ~ 56

Author(s):

Gunilla Lundquist ◽

Birgit H. Rasmussen ◽

Bertil Axelsson

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Symptom Control ◽

Life Care ◽

Her Family ◽

Patients With Cancer ◽

Quality Register ◽

National Quality ◽

Imminent Death ◽

The Difference

Purpose This study examines whether end-of-life care for patients with cancer who were informed about imminent death differs from care for those patients with cancer who were not informed. Patients and Methods This study included all cancer deaths between 2006 and 2008 for which the patient did not lose his or her decision-making capacities until hours or days before death (N=13,818). These patients were taken from a national quality register for end-of-life care. The majority of the patients—91% (n=12,609) —had been given information about imminent death; 9% (n=1,209) had not been informed. Because of the difference in sample size, a matching procedure was performed to minimize bias. This resulted in a comparison of 1,191 informed and 1,191 uniformed patients. Nonparametric methods were used for statistical analyses. Results Informed patients significantly more often had parenteral drugs prescribed as needed (ie, PRN), had his or her family informed, died in his or her preferred place, and had family who were offered bereavement support. There was no difference in symptom control (ie, pain, anxiety, confusion, nausea, and respiratory tract secretions) between the groups. Conclusion Providing information of imminent death to a patient with cancer at the end of life does not seem to increase pain or anxiety, but it does seem to be associated with improved care and to increase the likelihood of fulfilling the principles of a good death.

Download Full-text

Equal palliative care for foreign-born patients: A national quality register study

Palliative & Supportive Care ◽

10.1017/s1478951521000110 ◽

2021 ◽

pp. 1-8

Author(s):

Maria E. Carlsson ◽

Katarina Hjelm

Keyword(s):

Palliative Care ◽

End Of Life ◽

Quality Indicators ◽

End Of Life Care ◽

General Pattern ◽

Life Care ◽

Foreign Born ◽

Quality Register ◽

National Quality ◽

Specialized Palliative Care

Abstract Objectives To use data from a national quality register to investigate if there are differences relating to migrant background in the quality of end-of-life care of patients dying in Sweden. Methods A retrospective, comparative register-based study. In total, 81,418 deceased patients, over 18 years of age, registered in the Swedish Register of Palliative Care during 2017 and 2018, of expected death were included in the study. Of these, 72,012 were Swedish-born and 9,395 were foreign-born. Descriptive and analytical statistical methods were used. Results No general pattern of differences in quality regarding end-of-life care was found between Swedish- and foreign-born patients. There were several significant differences in various quality indicators but not in a specific direction. Sometimes, the quality indicators showed an advantage for Swedish-born patients but just as often, they were also favorable for foreign-born patients. Swedish-born patients had greater access to specialized palliative care than foreign-born patients. Foreign-born patients were more often cared for in general home care setting, despite a higher frequency of cancer diagnosis. Significance of results Foreign-born patients were less likely to be cared for in specialized palliative care units and had poorer access to palliative care teams than Swedish-born patients, despite having a higher proportion of cancer diagnoses. However, no general pattern was found indicating that foreign-born patients were disadvantaged in the quality indicators measured in the present study. Perhaps, this is an indication that the palliative care in Sweden is individualized; nonetheless, the quality of end-of-life care would be higher if dying patients, regardless of country of birth, have better access to specialized palliative care.

Download Full-text

Were Clinical Routines for Good End-of-Life Care Maintained in Hospitals and Nursing Homes During the First Three Months of the Outbreak of COVID-19? A National Register Study

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2020.09.043 ◽

2021 ◽

Vol 61 (1) ◽

pp. e11-e19

Author(s):

Lisa Martinsson ◽

Peter Strang ◽

Jonas Bergström ◽

Staffan Lundström

Keyword(s):

Nursing Homes ◽

End Of Life ◽

End Of Life Care ◽

Register Study ◽

Life Care ◽

National Register

Download Full-text

Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population

Journal of Oncology Practice ◽

10.1200/jop.2017.021766 ◽

2017 ◽

Vol 13 (10) ◽

pp. e874-e880 ◽

Cited By ~ 6

Author(s):

Emily E. Johnston ◽

Abby R. Rosenberg ◽

Arif H. Kamal

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Quality Measures ◽

Care Quality ◽

Patient Choice ◽

Decision Makers ◽

Hospital Death ◽

Life Care ◽

High Quality ◽

National Quality

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services. The unique psychosocial issues facing families who are losing a child include challenges for parent decision makers and young siblings. Furthermore, the focus on advance directive documentation in adult care may be less relevant in pediatrics because parental decision makers are available. Health care quality measures provide a framework for tracking the care provided and aid in agency and provider accountability, reimbursement, and educated patient choice for location of care. The National Quality Forum, Joint Commission, and other groups have developed several end-of-life measures. However, none of the current quality measures focus on the unique needs of dying pediatric patients and their caregivers. To evolve the existing infrastructure to better measure and report quality pediatric end-of-life care, we propose two changes. First, we outline how existing adult quality measures may be modified to better address pediatric end-of-life care. Second, we suggest the formation of a pediatric quality measure end-of-life task force. These are the next steps to evolving end-of-life quality measures to better fit the needs of seriously ill children.

Download Full-text

Impact of Accuracy of Survival Predictions on Quality of End-of-Life Care Among Patients With Metastatic Cancer Who Receive Radiation Therapy

Journal of Oncology Practice ◽

10.1200/jop.18.00516 ◽

2019 ◽

Vol 15 (3) ◽

pp. e262-e270 ◽

Cited By ~ 7

Author(s):

Katherine Sborov ◽

Stephanie Giaretta ◽

Amanda Koong ◽

Sonya Aggarwal ◽

Rebecca Aslakson ◽

...

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Metastatic Cancer ◽

Private Insurance ◽

Life Care ◽

Younger Age ◽

National Quality ◽

Generalized Estimation Equation ◽

Oncology Practice

PURPOSE: For patients treated with palliative radiation, we examined the association between life expectancy predictions by radiation oncologists and aggressive end-of-life care. MATERIALS AND METHODS: We included decedents from a study that assessed the ability of oncologists to predict survival of patients with metastatic cancer who received radiation. We identified patients who died within 12 months of study enrollment to assess accuracy of predictions. Aggressive end-of-life care was defined by the National Quality Forum, ASCO Quality Oncology Practice Initiative metrics, and advanced radiation modalities in the last month of life. Survival predictions were categorized as follows: correct (< 12 months), 12 to 18 months, 18 to 24 months, and more than 24 months. We assessed association between prediction and aggressive end-of-life care using a generalized estimation equation. RESULTS: Of 489 decedents, we identified 467 encounters with survival estimates. Overall, 156 decedents (32%) met at least one metric of aggressive end-of-life care. Factors associated with aggressive end-of-life care included younger age, female sex, primary cancer diagnosis, no brain metastases, and private insurance. In each encounter when an oncologist predicted survival, 363 predictions (78%) were correct (< 12 months), 54 (11%) incorrectly predicted 12 to 18 months, 27 (6%) predicted 18 to 24 months, and 23 (5%) predicted more than 24 months. Compared with patients who had encounters that had correct survival predictions, patients predicted to live more than 24 months were more likely to meet at least one metric of aggressive end-of-life care (odds ratio, 2.55; 95% CI, 1.09 to 5.99; P = .03). CONCLUSION: Inaccurate survival predictions by oncologists are associated with more aggressive end-of-life care for patients with advanced cancer.

Download Full-text