The Cancer Experiences Collaborative aimed to improve the quality and quantity of research in supportive and palliative care in the UK. An impact report to be published by NCRI in late , highlights the considerable achievements of CECo which has attracted international attention as a model for research collaboration and capacity building. For example, CECo was used as a model for the establishment of similar research collaboratives: in Victoria, Australia, and in the new All-Ireland Institute for Hospice and Palliative Care funding Euros 8 million, where I have been appointed as an external expert advisor and member of the Research Steering Board.
I am on the senior management teams of the five current EU FP7 projects listed above and led Work Packages in each of these projects. I am widely recognised throughout the world as an influential leader in promoting multidisciplinary work in palliative care. The EAPC is a Non-governmental organisation NGO recognised by the Council of Europe which represents 55 national palliative care associations from 32 countries in Europe and 47 countries worldwide with a membership of over 80, professionals.
I manage a secretariat based in Milan, Italy, and chair an international elected Board. The EAPC undertakes a range of strategic, policy, advocacy, and scientific work eg publishing clinical guidelines which are generally regarded as world leading.
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PhD projects concerned with: palliative care and end of life care, bereavement and loss, family carers, older people, organisational development and evaluation. What are the views of people affected by cancer and other illnesses about end of life issues? Professor Sheila Payne Professor Research Overview My research expertise is in palliative and end of life care, a multidisciplinary field.
PACE: Improving palliative care to older people living in nursing homes using action research funded by EC FP7 , in collaboration with Professor Lieve van der Block, VUB, Brussels and others Research Interests My specific research interests focus on the role and experiences of family carers in supporting patients approaching the end of life.
Late advance directive documentation, minimal early palliative care involvement, and the association of early hospice enrollment with death in a home setting underscore the need to improve care and better define palliative care quality measures in glioblastoma.
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Glioblastoma is the most common type of primary malignant brain tumor with 13, new diagnoses in the United States each year. Glioblastoma is complicated by significant morbidity that is burdensome for both patients and caregivers. In contrast to other malignancies, early cognitive decline is a common symptom in patients with glioblastoma. In patients with malignancies, early and systematic advance care planning is associated with less aggressive care at the end of life, improved patient and caregiver quality of life, earlier hospice enrollment, less psychologic morbidity for patients and caregivers, alignment of care with patient preferences, more cost-effective care, and improved survival.
Investigators have defined the care needs of patients and families with high-grade gliomas, but few have examined quality of life and patient outcomes. There is an increasing imperative that patients with cancer and their families receive high-quality palliative care throughout the course of their illness.
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This program compiled over quality measures for oncology practices that focus on improving the quality of care. In this study, we evaluated the performance of 5 palliative care quality measures in patients with glioblastoma at a single institution. We also performed an exploratory analysis to determine if there is an association between individual quality measures and patient outcomes.
The University of Rochester Division of Neuro-Oncology cares for patients in a multidisciplinary outpatient clinic that includes specialists from neuro-oncology, radiation oncology, and neurosurgery. At least 30 to 40 patients with newly diagnosed glioblastoma are seen in the outpatient setting each year, and the majority are followed from diagnosis until death. Five measures were selected based on their relevancy to the glioblastoma population and comprehensive representation of end of life care.
Here we detail our approach to defining quality measure adherence. Emotional Assessment by the Second Oncology Visit. Documentation of mood in either the review of systems or physical exam was excluded from quality measure adherence. If a study subject did not have a third oncology visit, advance directive documentation within 2 weeks of the prior visit was considered adherence to the quality measure. A MOLST form is specific to New York State and includes preferences about cardiac resuscitation, intubation, artificial feeding, intravenous fluid administration, antibiotic usage, and future hospitalization.
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For patients with a MOLST form completed before death, we recorded the person of consent patient vs other. Last date of chemotherapy was determined via medication administration or date of oncology visit when the decision was made to stop all chemotherapy.
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Patients who are enrolled in hospice are often cared for at home or in a hospice-associated facility. Individual dates of hospice enrollment were verified via scanned images of hospice enrollment papers, an encounter with hospice staff, or telephone encounters confirming hospice enrollment.
Hospice involvement was confirmed using the methods outlined above. Palliative care is a specialty that focuses on symptomatic and supportive care of the patient at any time in disease course. Date and setting inpatient vs outpatient of the first palliative care consultation were recorded. Overall survival was calculated from the date of pathologic diagnosis to the date of death.
The location-of-death categories were grouped as death in a home setting home or comfort care home or death in a health care facility skilled nursing facility with hospice, inpatient hospice, skilled nursing facility, intensive care unit, or emergency department. We also further defined the timing of hospice enrollment.
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To perform this analysis, we assessed the timing of advance directive and treatment-limiting order documentation MOLST, DNR, or hospice enrollment and calculated the time point that such directives and orders were put in place compared to the patients overall survival from diagnosis to death. We then plotted and analyzed the overall proportion of survival lived without advance directive and treatment-limiting orders.
We used descriptive statistics to summarize the clinical characteristics of the cohort and to determine the proportion of patients adhering to each quality measure. Kaplan—Meier survival analysis was used to determine overall survival. We used chi-square tests, Kaplan—Meier curves, and multivariate logistic and linear regressions to determine if there were associations between clinical characteristics, adherence to quality measures, and patient outcomes.
The final cohort included patients who were diagnosed with glioblastoma between January 1, and May 1, , and who died before November 1, The median age was 63 years; The median survival was Adherence ranged from a low of Chemotherapy administration was unknown for 3. By the third neuro-oncology visit, Most of these were health care proxy forms alone More patients died in a home setting Patients who died in a home setting spent more time on hospice compared with patients who died in a health care facility median of 22 days vs 7.
Location of death categorized by home setting vs health care facility. Kaplan—Meier analysis of time from hospice enrollment to death stratified by location of death home setting vs health care facility. The median time from first advance directive documentation to death was 3. Percentage of life after diagnosis spent without an advance directive or treatment-limiting order for each individual patient. Early advance care planning, advance directive documentation, and hospice involvement are essential to align care with patient preferences and to provide cancer patients and their families with high-quality care.
In our study, we analyzed adherence to the established palliative care quality measures, explored associations with patient outcomes, examined opportunities to improve care, and reflected on the utility of those measures in glioblastoma. Most of these early advance directives were health care proxy forms alone, and for many patients, this was the only indirect evidence of advance care planning prior to the end of life. Although the median time from advance directive documentation to death was 3. Most patients with glioblastoma have impaired decision-making capacity in the last month of life.
Palliative care quality measures in glioblastoma should emphasize early end-of-life discussions, define detailed advance directives, and focus on early directive documentation in order to protect patient autonomy and reduce the decision-making burden for caregivers. For those who were involved with palliative care, the majority of consults occurred during an inpatient hospital admission for an acute medical problem. Our results are consistent with the literature in illustrating that early involvement of palliative care services is rare in neuro-oncology.
A prospective study looking at the utility and feasibility of early palliative care in glioblastoma would be helpful in determining whether palliative care interventions should be incorporated into future quality measures. Earlier hospice care is associated with fewer hospitalizations and futile medical services at the end of life, better quality of life for terminally ill patients and families, and a more cost-effective approach to care.
Future prospective studies should examine potential barriers to hospice enrollment in glioblastoma, focusing on the perspective of patients, caregivers, and health care providers. Many patients and families faced with terminal illness prefer death at home or outside of the hospital. Almost all of these patients were admitted to the hospital for clinical decline, subsequently enrolled in hospice, and then discharged to either skilled nursing facility hospice or inpatient hospice for the end of life.
Their route to hospice was through a crisis rather than a collaborative outpatient decision to enter into hospice care, and this resulted in the unfavorable outcome of death in a health care facility. Additional studies are needed to evaluate risk factors for hospitalization at the end of life and barriers to death in a home setting for patients with glioblastoma. Ideally, quality measure adherence should improve patient outcomes. To our knowledge, these are the first data in the glioblastoma population linking earlier hospice enrollment with death in a home setting.
There was no difference in survival between patients who died in a home setting and those who died in a health care facility, underscoring previous studies linking high health care utilization at the end of life with little-to-no survival benefit and likely a decreased quality of life for patients with terminal malignancies. The patients in our study had continuity throughout their care and were followed from diagnosis until death, allowing us to effectively study palliative care quality measures and end-of-life outcomes.
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The demographics and clinical characteristics of our study sample are consistent with population-based studies in the U. In addition, the final study analysis may misrepresent end-of-life care in glioblastoma because patients who were alive at the time of the analysis were excluded. The design of our study leaves room for unmeasured confounding variables that cannot be accounted for due to the nature of a retrospective analysis.
We recognize the importance of this limitation and note that these variables would be most appropriately assessed in a prospective study. Also, patients may have received some aspects of care at outside institutions that could not be captured through our EMR. Finally, we are aware that gaps in documentation may exist, including but not limited to the data about emotional assessments.
To minimize the gaps in documentation and better address patient distress, we advocate for the use of standardized emotional assessment tools throughout the course of care in glioblastoma.
Our study illustrates both the complexity of assessing quality measures in glioblastoma and the need for more specific guidelines regarding advance care planning and end-of-life care in this population. Quality measures in glioblastoma should focus on defining early advance directive documentation, suggesting appropriate timing for hospice enrollment, and determining which patients may benefit from early palliative care interventions.
Additional prospective studies are needed to inform these quality measures and guidelines, with the ultimate goal of improving care and outcomes for patients with glioblastoma. Conflict of Interest statement. There are no disclosures from other authors. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide.
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