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20-05-2017 | Glioblastoma multiforme | Article

End of life care for glioblastoma patients at a large academic cancer center

Journal: Journal of Neuro-Oncology

Authors: Kamini E. Kuchinad, Roy Strowd, Anne Evans, W. Anthony Riley, Thomas J. Smith

Publisher: Springer US

Abstract

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.
Literature
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
2.
Lin E, Rosenthal MA, Le BH, et al (2012) Neuro-oncology and palliative care: a challenging interface. Neuro-Oncology 14:iv3–iv7CrossRefPubMedPubMedCentral
3.
Pace A, Di Lorenzo C, Guariglia L, et al (2009) End-of-life issues in brain tumor patients. J Neurooncol 91:39–43CrossRefPubMed
4.
Ford E, Catt S, Chalmers A, et al (2012) Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro-Oncology 14(4):392–404CrossRefPubMedPubMedCentral
5.
Smith TJ, Temin S, Alesi ER et al (2012) American Society of Clinical Oncology Provisional Clinical: The Integration of Palliative Care into Standard Oncology Care. J Clin Oncol 30(8):880–887CrossRefPubMed
6.
WHO | WHO Definition of Palliative Care. WHO. 2012. http://​www.​who.​int/​cancer/​palliative/​definition/​en/​. Accessed 1 Mar 2017
7.
Parikh RB, Kirch RA, Smith TJ et al (2013) Early specialty palliative care—translating data in oncology into practice. N Engl J Med 369:2347–2351CrossRefPubMedPubMedCentral
8.
Temel JS, Greer JA, Muzikansky A et al (2009) Early palliative care for patients with metastatic non-small cell lung cancer. N Engl J Med 363(8):733–742CrossRef
9.
Peppercorn JM, Smith TJ, Helft PR et al (2011) Toward individualized care for patients with advanced cancer. J Clin Oncol 29(6):755–760CrossRefPubMed
10.
Levy MH, Smith TJ, Alvarez-Perez A et al (2014) Palliative care, Version 1.2014. Featured updates to the NCCN guidelines. J Natl Compr Canc Netw 12(10):1379–1388CrossRefPubMed
11.
Levy MH, Adolph MD, Back A et al (2012) Palliative care. NCCN (National Comprehensive Cancer Network). J Natl Compr Canc Netw 10(10):1284–1309CrossRefPubMed
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
13.
Walbert T, Khan M (2014) End-of-life symptoms and care in patients with primary malignant brain tumors: a systematic literature review. J Neurooncol 117(2):217–224CrossRefPubMed
14.
Lin E, Rosenthal MA, Eastman P et al (2013) Inpatient palliative care consultation for patients with glioblastoma in a tertiary hospital. Intern Med J 43(8):942–945CrossRefPubMed
15.
Reville B, Miller MN, Toner RW et al (2010) End-of-life care for hospitalized patients with lung cancer: utilization of a palliative care service. J Palliat Med 13(10):1261–1266CrossRefPubMed
16.
Pace A, Di Lorenzo C, Capon A et al (2012) Quality of care and rehospitalization rate in the last stage of disease in brain tumor patients assisted at home: a cost effectiveness study. J Palliat Med 15:225–227CrossRefPubMed
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
18.
Golla H, Ale Ahmad M, Galusho M et al (2014) Glioblastoma multiforme from diagnosis to death: a prospective, hospital-based cohort pilot feasibility study of patient reported symptoms and needs. Support Care Cancer 22(12):3341–3352CrossRefPubMed
19.
Koekkoek JAF, Dirven L, Reijneveld JC et al (2014) End of life care in high-grade glioma patients in three European countries: a comparative study. J Neurooncol 120(2):303–310. doi:10.​1007/​s11060-014-1548-5 CrossRefPubMed
20.
ASCO Institute for Quality. (2014). Retrieved November 24, 2014, from http://​www.​instituteforqual​ity.​org/​
21.
Morden NE, Chang CH, Jacobson JO et al (2012) End-of-life care for Medicare beneficiaries with cancer is highly intensive overall and varies widely. Health Aff (Millwood) 31(4):786–796CrossRef
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
23.
Rocque GB, Barnett AE, Illig LC et al (2013) Inpatient hospitalization of oncology patients: are we missing an opportunity for end-of-life care? J Oncol Pract 9(1):51–54CrossRefPubMed
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. 290-02-0003
25.
Wilson CJ, Newman J, Tapper S et al (2013) Multiple locations of advance care planning documentation in an electronic record: are they easy to find? J Palliat Med 16(9):1089–1094CrossRefPubMed
26.
Turley M, Wang S, Meng D, et al (2016) Impact of a care directives activity tab in the electronic health record on documentation of advanced care planning. Perm J 20(2):43–48PubMedPubMedCentral
27.
Ahluwalia SC, Chuang FL, Antonio ALM, Malin JL, Lorenz KA, Walling AM (2011) Documentation and discussion of preferences for care among patients with advanced cancer. J Oncol Pract 7(6):361–366. doi:10.​1200/​JOP.​2011.​000364 CrossRefPubMedPubMedCentral
28.
Wheatley E, Huntington MK (2012) Advanced directives and code status documentation in an academic practice. Fam Med 44(8):574–578PubMed
29.
Resnick HE, Hickman S, Foster GL (2012) Documentation of advance directives among home health and hospice patients: united states, 2007. Am J Hosp Palliat Med 29(1):26–35. doi:10.​1177/​1049909111407627​ CrossRef
30.
Temel JS, Greer JA, Admane S et al (2010) Code status documentation in the outpatient electronic medical records of patients with metastatic cancer. J Gen Intern Med 25(2):150–153. doi:10.​1007/​s11606-009-1161-z CrossRefPubMed
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 CrossRefPubMed
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
33.
Hayek S, Nieva R, Corrigan F et al (2014) End-of-life care planning: improving documentation of advance directives in the outpatient clinic using electronic medical records. J Palliat Med 17(12):1348–1352CrossRefPubMed
34.
Sizoo EM, Pasman HRW, Buttolo J et al (2012) Decision-making in the end-of-life phase of high-grade glioma patients. Eur J Cancer 48(2):226–232. doi:10.​1016/​j.​ejca.​2011.​11.​010 CrossRefPubMed
35.
Triebel KL, Martin RC, Nabors LB, Marson DC (2009) Medical decision-making capacity in patients with malignant glioma. Neurology 73(24):2086–2092. doi:10.​1212/​WNL.​0b013e3181c67bce​ CrossRefPubMedPubMedCentral
36.
Murphy E, Froggatt K, Connolly S et al (2016) Palliative care interventions in advanced dementia. In: Murphy E (ed) Cochrane database of systematic reviews, vol 12. John Wiley & Sons, Ltd, Chichester. doi:10.​1002/​14651858.​CD011513.​pub2
37.
Cheong K, Fisher P, Goh J, Ng L, Koh HM, Yap P (2015) Advance care planning in people with early cognitive impairment. BMJ Support Palliat Care 5(1):63–69. doi:10.​1136/​bmjspcare-2014-000648 CrossRefPubMed
38.
Garand L, Dew MA, Lingler JH, DeKosky ST (2011) Incidence and predictors of advance care planning among persons with cognitive impairment. Am J Geriatr Psychiatry 19(8):712–720. doi:10.​1097/​JGP.​0b013e3181faebef​ CrossRefPubMedPubMedCentral
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
40.
Trad W, Koh ES, Daher M et al (2015) Screening for psychological distress in adult primary brain tumor patients and caregivers: considerations of cancer care coordination. Front Oncol 5:203CrossRefPubMedPubMedCentral
41.
Scibetta C, Kerr K, Mcguire J et al (2016) The costs of waiting: implications of the Timing of Palliative Care Consultations among a Cohort of Decedents at a Comprehensive Cancer Center. J Palliat Med 19(1):69–75CrossRefPubMed
42.
Sizoo EM, Braam L, Postma TJ, et al (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro-Oncology 12(11):1162–1166CrossRefPubMedPubMedCentral
43.
Armstrong TS, Bishof AM, Brown PD, et al (2016) Determining priority signs and symptoms for use as clinical outcomes assessments in trials including patients with malignant gliomas: Panel 1 report. Neuro-Oncology 18:ii1–ii12CrossRefPubMedPubMedCentral
44.
Bruera E, Kuehn N, Miller MJ et al (1991) The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 7(2):6–9PubMed
45.
Protenoy RK, Thaler HT, Kornblith AB et al (1994) The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence characteristics and distress. Eur J Cancer 30(9):1326–1336CrossRef
46.
LeBlanc TW, Back AL (2011) Linking palliative care and oncology practice: performance status as a common thread. J Oncol Pract 7(6):381–382CrossRefPubMedPubMedCentral
47.
Johnson KS, Kuchibhatla M, Tulsky JA (2009) Racial differences in self-reported exposure to information about hospice care. J Palliat Med 12(10):921–927CrossRefPubMedPubMedCentral
48.
Mazanec PM, Daly BJ, Townsend A (2010) Hospice utilization and end of life care decision making of African Americans. Am J Hosp Palliat Med 37(8):560CrossRef
49.
Warden V, Hurley AC, Volicer L (2003) Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc 4(1):9CrossRefPubMed
50.
Herr K, Bursch H, Ersek M et al (2010) Use of pain-behavioral assessment tools in the nursing home: expert consensus recommendations for practice. J Gerontol Nurs 36(3):18CrossRefPubMed
51.
Catt S, Chalmers A, Fallowfield L (2008) Psychosocial and supportive-care needs in high-grade glioma. Lancet Oncol 9:884–889CrossRefPubMed
52.
Blakely JO, Coons SJ, Corboy JR, et al (2016) Clinical outcome assessment in malignant glioma trials: measuring signs, symptoms and functional limitations. Neuro-Oncology 18:ii13–ii20CrossRef
53.
Avila EK, Chamberlain M, Schiff D et al (2017) Seizure control as a new metric in assessing efficacy of tumor treatment in low-grade glioma trials. Neuro Oncol 19(1):12–21CrossRefPubMed
54.
Poulose JV, Do YK, Neo PS (2013) Association between referral-to-death interval and location of death of patients referred to a hospital-based specialist palliative care service. J Pain Symptom Manage 46(2):173–181CrossRefPubMed
55.
Kumar P, Temel JS (2013) End-of-life care discussions in patients with advanced cancer. J Clin Oncol 31(27):3315–3319CrossRefPubMed
56.
Ellsworth SG, Alcorn SR, Hales RK et al (2014) Patterns of care among patients receiving radiation therapy for bone metastases at a large academic institution. Int J Radiat Oncol Biol Phys 89(5):1100–1105CrossRefPubMedPubMedCentral
57.
Roze des Ordons AL, Sharma N, Heyland DK et al (2015) Strategies for effective goals of care discussions and decision-making: perspectives from a multi-centre survey of Canadian hospital-based healthcare providers. BMC Palliat Care 14:38CrossRefPubMedPubMedCentral
58.
Kern LM, Barron Y, Dhopeshwarkar RV et al (2013) HITEC Investigators. Electronic health records and ambulatory quality of care. J Gen Intern Med 28(4):496–503CrossRefPubMed
59.
Soto CM, Kleinman KP, Simon SR (2012) Quality and correlates of medical record documentation in the ambulatory setting. BMC Health Serv Res 2:22CrossRef
60.
Hayrinen K, Saranto K, Nykanen P (2008) Definition, structure, content use and impacts of electronic health records: a review of the research. Int J Med Inform 77(5):291–304CrossRefPubMed