End of life care for glioblastoma patients at a large academic cancer center
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Glioblastoma (GBM) is a universally fatal disease, complicated by significant cognitive and physical disabilities, inherent to the disease course. The purpose of this study was to retrospectively analyze end-of-life care for GBM patients at an academic center and compare utilization of these services to national quality of care guidelines, with the goal of identifying opportunities to improve end-of-life care. Single center retrospective cohort study of GBM patients at Johns Hopkins Hospital (JHH) between 2009 and 2014, using electronic medical records and hospice records. Comprehensive medical record review of 100 randomly selected patients with GBM, who were actively treated at JHH. Secondary analysis of all JHH GBM patients (n = 45) who received hospice care at Gilchrist Services, our largest provider, during this time period. Of 100 patients, 76 were referred to hospice. Despite the poor survival and changes in mental capacity associated with this disease, only 40% of individuals had documentation of code status and only 17% had any documentation of advance directives (ADs). None had documentation by a health care provider of a formal symptom, psychosocial, or spiritual assessment at greater than 50% of clinic visits. Only 17% used chemotherapy in their last month of life. 37% were hospitalized in the last month of life for an average of 9 days. Of the Gilchrist Services patients, the median length of stay in hospice was 21 days and 64% of these patients died in their residence with hospice services. Documentation of palliative care and end-of-life measures could improve quality of care for GBM patients, especially in the use of ADs, symptom, spiritual, and psychosocial assessments, with earlier use of hospice to prevent end-of-life hospitalizations.
KeywordsHospice Palliative care Glioblastoma
TJS is supported by the Harry J. Duffey Family Fund and NCI grant P 30 006973.
Compliance with ethical standards
Conflict of interest
All authors confirm that they have no conflicts of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This study was approved by the Johns Hopkins eIRB.
- 1.The American Association of Neurological Surgeons. (2015, October 15). Retrieved July 02, 2016, from http://www.aans.org/patient information/conditions and treatments/glioblastoma multiforme.aspx
- 6.WHO | WHO Definition of Palliative Care. WHO. 2012. http://www.who.int/cancer/palliative/definition/en/. Accessed 1 Mar 2017
- 12.Wilkinson A, Wenger N, Shugarman L (2007, June 01). Literature review on advance directives. Retrieved July 02, 2016, from https://aspe.hhs.gov/basic-report/literature-review-advance-directives#literature
- 17.Pompili A, Telara S, Villani V et al (2014) Home palliative care and end of life issues in glioblastoma multiforme: results and comments from a homogeneous cohort of patients. Neurosurg Focus 37(6):E5. doi:10.3171/2014.9.FOCUS14493
- 20.ASCO Institute for Quality. (2014). Retrieved November 24, 2014, from http://www.instituteforquality.org/
- 22.Facts on Hospice and Palliative Care. (2015). Retrieved 5 July 2016, from http://www.nhpco.org/hospice-statistics-research-press-room/facts-hospice-and-palliative-care
- 24.Lorenz K, Lynn J, Morton SC, et al (2004) End-of-life care and outcomes. Agency for Healthcare Research and Quality (AHRQ), Rockville, MD, Dec 2004. Evidence Report/Technology Assessment #110, Publication #05-E004-1, Contract No. 290-02-0003Google Scholar
- 31.Grudzen CR, Buonocore P, Steinberg J et al (2016) Concordance of advance care plans with inpatient directives in the electronic medical record for older patients admitted from the emergency department. J Pain Symptom Manage 51(4):647–651. doi:10.1016/j.jpainsymman.2015.12.318 CrossRefPubMedGoogle Scholar
- 32.Poll-"Conversation Stopper: What’s Preventing Physicians from Talking with Patients About End-of-Life and Advance Care Planning?” (2016, April 14). Retrieved July 05, 2016, from http://www.jhartfound.org/news-events/news/advance-care-planning-poll
- 39.Fritz L, Dirven L, Reijneveld JC et al (2016) Advance care planning in glioblastoma patients. Cancers (Basel) 8(11):102. doi:10.3390/cancers8110102