The Healthcare Journey of Women With Advanced Gynecological Cancer From Diagnosis Through Terminal Illness: Qualitative Analysis of Progress Note Data

2021 ◽  
pp. 104990912110642
Author(s):  
Ellis C. Dillon ◽  
Vidita Chopra ◽  
Elizabeth Mesghina ◽  
Anthony Milki ◽  
Ava Chan ◽  
...  
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Hospice Care ◽  
Gynecological Cancer ◽  
Gynecologic Cancer ◽  
Stage Iv ◽  
Urgent Care ◽  
Psychosocial Needs ◽  
Goals Of Care ◽  
Progress Notes

Objective To examine women’s journeys with gynecologic cancer from before diagnosis through death and identify elements of their healthcare experience that warrant improvement. Methods This exploratory study used longitudinal progress notes data from a multispecialty practice in Northern California. The sample included women with stage IV gynecological cancer diagnosed after 2011 and who died before 2018. Available progress notes from prior to diagnosis to death were qualitatively analyzed. Results We identified 32 women, (median age 61 years) with mostly uterine (n=17) and ovarian (n=9) cancers and median survival of 9.2 months (min:2.9 and max:47.5). Sixteen (50%) received outpatient palliative care and 18 (56%) received hospice care. The analysis found wide variation in documentation about communication about diagnosis, prognosis, goals of care, stopping treatment, and starting hospice care. Challenges included escalating/severe symptoms, repeated urgent care/emergency department/hospital encounters, and lack of or late access to palliative and hospice care. Notes also illustrated how patient background and goals influenced care trajectory and communication. Documentation styles varied substantially, with palliative care notes more consistently documenting conversations about goals of care and psychosocial needs. Conclusion This analysis of longitudinal illness experience of women with advanced gynecological cancer suggests that clinicians may want to (1) prioritize earlier discussion about goals of care; (2) provide supplemental support to patients with higher needs, possibly through palliative care or navigation; and (3) write notes to enhance patient understanding now that patients may access all notes.

Palliative care referral practices and perceptions: The divide between metropolitan and non-metropolitan general practitioners

2011 ◽  
Vol 9 (2) ◽  
pp. 181-189 ◽  
Author(s):  
Claire E. Johnson ◽  
Afaf Girgis ◽  
Christine L. Paul ◽  
David C. Currow
Keyword(s):  
Palliative Care ◽  
General Practitioners ◽  
Advanced Cancer ◽  
Terminal Illness ◽  
Symptom Control ◽  
Physical Symptoms ◽  
Care Physician ◽  
Self Report ◽  
Psychosocial Needs ◽  
Consultative Service

AbstractObjective:Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).Method:Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.Results:Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.Significance of results:Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.

The sooner the better: Analysis of proactive palliative medicine consultation in the medical intensive care unit amongst patients with stage IV malignancy.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 78-78
Author(s):  
Shanna R Levine ◽  
Earle I Bridget ◽  
Wendy S.A. Edwards
Keyword(s):  
Palliative Care ◽  
Length Of Stay ◽  
Hospital Stay ◽  
Palliative Medicine ◽  
Symptom Relief ◽  
Stage Iv ◽  
Active Stage ◽  
Trigger Tool ◽  
Goals Of Care ◽  
Rehabilitation Facility

78 Background: Palliative care has been shown to improve quality of life and prolong median survival in patients with advanced cancer. Sadly, patients are still suffering at the end of their lives perhaps secondary to aggressive hospital care. ICU use in the last month of life increased from 24.3% to 29.2% over the last study decade. Our objective was to evaluate and quantify outcomes, including survival, of patients with active stage IV malignancy admitted to an urban university affiliated hospital MICU who had a palliative medicine consult. Methods: A retrospective chart review of patients from 04/2013 - 04/2014 admitted to the MICU with active stage IV malignancy identified via a validated proactive case finding trigger tool. The trigger was based on eight criteria, one of which being active stage IV malignancy. The MICU census was reviewed biweekly. Data collected included pain and symptom relief, clarification of goals of care, length of stay, and disposition (hospice, rehabilitation facility, home and death). Results: Four hundred sixty eight patients were assessed. One hundred and twenty two patients met 1 of the 8 criteria, and 24 patients met the inclusion criteria for review. Three patients were not seen due to attending and/or family preference. Thirty eight percent of patients had improved symptoms and management control, 42% had clarification of goals of care and medically appropriate decision making, and 42% experienced psychosocial spiritual counseling. Eight patients died during their hospital stay, 4 were transferred to inpatient hospice facilities, 3 to rehabilitation facility, 2 went home and the remainder was “other”. The average length of stay of patients seen by palliative care was 20 days compared to 31 days for patients not seen by the palliative team. Conclusions: Nearly 40% of patients with active stage IV malignancy admitted to the MICU died during their hospital stay. We believe this study illuminates the futility of ICU care in this patient population. Consultation from the palliative medicine team using a proactive trigger tool can be beneficial to allow for better symptom control, clarification of goals and psychosocial counseling.

Aggressive care at the end of life: A study of practice based factors in patients with stage IV cancer.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 80-80
Author(s):  
Mohammad Omar Atiq ◽  
Rahul Ravilla ◽  
Ajay Kumar ◽  
Sajjad Haider ◽  
Ji-Ling Tang ◽  
...  
Keyword(s):  
Palliative Care ◽  
Length Of Stay ◽  
End Of Life ◽  
Cancer Patients ◽  
Stage Iv ◽  
Goals Of Care ◽  
Significant Difference ◽  
Aggressive Care ◽  
Stage Iv Cancer ◽  
End Stage

80 Background: Numerous studies established that early utilization of palliative care-hospice services are beneficial to cancer patients. To reduce the incidence of aggressive care in terminal cancer patients, we conducted a quality improvement study to identify pertinent risk factors and develop interventions. Methods: Through chart review, we retrospectively identified patients with stage IV cancer that were followed by oncology clinic and were admitted to the University Hospital between 8/1/2015-10/31/15. For those patients who died during the last hospitalization or were discharged to hospice care, we obtained demographic, cancer related and practice related variables listed in Table. We used Mann Whitney U test and multivariable regression to find effects of factors related to length of stay (LOS) and cost of stay (COS). Results: Length of stay was significantly prolonged in those receiving chemotherapy within the past month (6 vs 3 p=0.035). Multivariate analyses found that patients with goals of care documented in the clinic had lower COS by 36.7% and LOS by 46.7%. On average, an ICU stay resulted in COS 2.2 times higher. No significant difference was seen in LOS based on a documented palliative care clinic visit or presence of an advanced directive. Conclusions: We identified practice based factors that need improvement including earlier goals of care conversations and less chemotherapy at the end of life. Identifying end stage patients in earlier admissions, collaborating with palliative care, and adding goals of care documentation to clinic note templates, are all interventions we are studying to improve care for end stage cancer patients. [Table: see text]

Examining the intersection of palliative care, hospice, and concurrent care in Veterans Affairs (VA).

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 139-139
Author(s):  
Kathleen Elizabeth Bickel ◽  
Cari Levy ◽  
Emily Corneau ◽  
Susan C Miller ◽  
Vincent Mor
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Stage Iv ◽  
Veterans Affairs ◽  
Descriptive Statistics ◽  
Small Cell Lung ◽  
Chi Square ◽  
Care Recipients ◽  
Hospice Use ◽  
Radiation Use

139 Background: The VA advocates for both palliative care and concurrent care (hospice care and cancer-directed treatment). Studies indicate that these policies have increased hospice use and have improved family-reported outcomes and other quality metrics. However, little is known about how palliative care, hospice care and concurrent care may interact to obtain these outcomes. Methods: This was a retrospective cohort study of veterans dying with stage IV non-small cell lung cancer in 2012. VA and Medicare administrative data were used to identify the cohort, chemotherapy and radiation use, hospitalizations, hospice use and length of stay (LOS). Palliative care use was determined by VA data only. Analyses included descriptive statistics, chi-square and analysis of variance. Results: Of the 1763 veterans, 850 (48.2%) received both palliative care and hospice, 392 (22.2%) received hospice only, 241 (13.7%) received palliative care only and 280 (15.9%) received neither. Receipt of cancer-directed treatment or hospitalization in the last 30 days of life was significantly different across these groups (p < 0.0001) and was highest at 65% (182/280) in the neither palliative care or hospice group. In the remaining groups, rates of cancer-directed treatment or hospitalization in the last 30 days were: 39.4% (95/241) in palliative care only, 29.3% (115/392) in hospice only and 23% (198/850) with both palliative care and hospice. Concurrent care was received by 314 veterans (17.8%), 275 also receiving palliative care. Among veterans receiving palliative care and Medicare hospice, concurrent care did not alter hospice utilization rates or LOS: 36.4% (100/275), LOS mean 22.3, median 16.5, range 1-97 and 37.2% (214/575), LOS mean 20.1, median 13, range 1-94, for concurrent care and non-concurrent care respectively. Conclusions: The rates of cancer-directed treatment or hospitalization in the last 30 days of life appeared to be reduced in a continuum from receipt of neither hospice nor palliative care, to receipt of palliative care or hospice alone, followed by receipt of both together. Concurrent care use was facilitated by palliative care without impacting Medicare hospice use or LOS in palliative care recipients.

Progress and trends in the utilization and adoption of palliative care in patients with terminal gynecologic cancer in the United States: A study of 4,264 women.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 11606-11606
Author(s):  
Anthony Milki ◽  
Amandeep Kaur Mann ◽  
Daniel Stuart Kapp ◽  
John K. Chan
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Private Insurance ◽  
Gynecologic Cancer ◽  
The United States ◽  
Cancer Type ◽  
Median Income ◽  
Logistic Regression Models ◽  
Lower Socioeconomic ◽  
Chi Squared

11606 Background: To determine the factors associated with the utilization of palliative care (PC) in patients with metastatic gynecologic cancer who died while hospitalized. Methods: Data were extracted from the National Inpatient Sample (NIS) database for patients with cervical, uterine, and ovarian cancers from 2005 to 2011. Chi-squared and logistic regression models were employed for statistical analyses. Results: Of 4264 women with gynecologic cancer, 983 (23.0%) utilized PC (median age: 66 years). 2633 (61.8%), 1034 (24.3%), and 597 (14.0%) patients had ovarian, uterine, and cervical cancer, respectively. The majority were white (57.9%), and the remainder were black (12.6%), Hispanic (7.8%), and Asian (3.1%). 24.9, 23.9, 23.6, and 25.2% were low, low-middle, middle-high, and high with respect to median income. Medicare, Medicaid, and private insurance was found in 46.7, 10.8, and 37.6% of patients. 36.9, 21.0, 18.0, and 24.1% of patients were treated in hospitals in the South, West, Midwest, and Northeast. 11.3, 23.9, and 64.2% of patients were treated in small, medium, and large hospitals, designated as teaching (53.1%) and nonteaching (46.3%) institutions. The utilization of PC increased from 5.2% in 2005 to 30.4% in 2011. Older age (OR: 1.34; 95% CI: 1.10-1.64; P = 0.01), high SES (OR: 1.37; 95% CI: 1.09-1.72; P = 0.01), privately insured (OR: 1.81; 95% CI: 1.46-2.24; P < 0.001), treatment at Western (OR: 1.94; 95% CI: 1.56-2.41; P < 0.001) and Midwestern hospitals (OR: 1.43; 95% CI: 1.15-1.77; P = 0.001), and depression (OR: 1.34; 95% CI: 1.00-1.80; P = 0.05) were associated with higher PC use. However, race, cancer type, hospital teaching status, and hospital location were not associated with PC use. Conclusions: The use of inpatient palliative care has increased significantly over the study period. The lower utilization of palliative care for terminal illness associated with younger, lower socioeconomic status, Southern and smaller volume hospitals warrants further attention.

Influence of timing of goals of care discussion on hospitalization outcomes in metastatic cancer patients.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18183-e18183
Author(s):  
Oluwadunni Emiloju ◽  
Djeneba Audrey Djibo ◽  
Jean G Ford
Keyword(s):  
Palliative Care ◽  
Critical Care ◽  
Length Of Stay ◽  
Cancer Patients ◽  
Hospital Readmission ◽  
Metastatic Cancer ◽  
Hospital Readmissions ◽  
Stage Iv ◽  
Continuous Variables ◽  
Goals Of Care

e18183 Background: Cancer patients often require acute hospitalizations, many of which are unplanned. These hospitalizations have been shown to increase in frequency near the end of life. The American College of Physicians recommends that goals of care (GOC) discussions be initiated early for metastatic cancers. We hypothesize that discussing GOC during hospitalization will help reduce readmissions and improve patient satisfaction, by helping to ensure that patients receive goal-congruent care. We aim to examine the association between the timing of GOC discussion and the patient's length of stay and the time to hospital readmission. Methods: We conducted a retrospective review of medical records of patients with stage IV solid tumors who were hospitalized acutely between August 2017 and July 2018 (N = 241). We assessed demographics, clinical information, timing of GOC discussion, use of palliative care services and hospital readmissions within 90 days. Chi-square tests were used to identify independent associations with having a GOC discussion; and anova was used for continuous variables. We used logistic regression to examine the association with a hospital readmission within 90 days, controlling for potential confounders. Results: The subjects were 26-92 years old and 40.6% were female. Only 43% (n = 106) of patients had a GOC discussion. Age, gender, tumor site, and presenting complaint were not independently associated with having a GOC discussion (p > 0.05). Overall, 34.4% (n = 83) had a palliative care encounter. Having a palliative care consult and being admitted to critical care were independently associated with having a GOC discussion. Early timing of GOC discussion was inversely associated with admission to critical care units (p < 0.05). Length of stay was positively correlated with having a GOC discussion. Thirty-seven percent (n = 91) had unplanned hospital readmission within 90 days. Having any GOC discussion reduced the odds of an unplanned hospital readmission within 90 days by 75% [OR = 0.25, 95% confidence interval (CI) 0.14-0.45]. Conclusions: Among hospitalized patients with stage IV cancer, performing an early GOC discussion is associated with better hospitalization outcomes. It is therefore important to perform GOC discussion early when such patients are acutely hospitalized.

Influence of timing of goals of care discussion on hospitalization outcomes in metastatic cancer patients.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 219-219
Author(s):  
Oluwadunni Emiloju ◽  
Jean G Ford ◽  
Djeneba Audrey Djibo
Keyword(s):  
Palliative Care ◽  
Critical Care ◽  
Length Of Stay ◽  
Cancer Patients ◽  
Hospital Readmission ◽  
Metastatic Cancer ◽  
Hospital Readmissions ◽  
Stage Iv ◽  
Continuous Variables ◽  
Goals Of Care

219 Background: Cancer patients often require acute hospitalizations, and these hospitalizations have been shown to increase in frequency near the end of life. The American College of Physicians recommends that goals of care (GOC) discussions be initiated early for metastatic cancers. Discussing GOC during hospitalization can help reduce readmissions and improve patient satisfaction, by helping to ensure that patients receive goal-congruent care. We aim to examine the association between the timing of GOC discussion and the patient's length of stay and the time to hospital readmission. Methods: We conducted a retrospective review of medical records of patients with stage IV solid tumors who were hospitalized acutely between August 2017 and July 2018. We assessed demographics, timing of GOC discussion, use of palliative care services and hospital readmissions within 90 days. Chi-square tests were used to identify independent associations with having a GOC discussion; and anova was used for continuous variables. We used logistic regression to examine the association with a hospital readmission within 90 days, controlling for potential confounders. Results: The subjects were 26-92 years old and 40.6% were female. Only 46% (n = 112) of patients had a GOC discussion. Age, tumor site, and presenting complaint were not independently associated with having a GOC discussion (p > 0.05). Overall, 34% (n = 82) had a palliative care encounter. Having a palliative care consult and being admitted to critical care were independently associated with having a GOC discussion. Early timing of GOC discussion was inversely associated with admission to critical care units (p < 0.05). Length of stay was positively correlated with having a GOC discussion. Thirty-eight percent (n = 92) had unplanned hospital readmission within 90 days. Having any GOC discussion reduced the odds of an unplanned hospital readmission within 90 days by 79% [OR = 0.21, 95% confidence interval 0.12-0.37]. Conclusions: Among hospitalized patients with stage IV cancer, performing an early GOC discussion is associated with better hospitalization outcomes. It is therefore important to perform GOC discussion early when such patients are acutely hospitalized.

Psychosocial Issues in Palliative Care

2018 ◽  
Keyword(s):  
Palliative Care ◽  
Current Literature ◽  
Frail Elderly ◽  
Terminal Illness ◽  
Current Practice ◽  
Psychosocial Care ◽  
Team Work ◽  
Psychosocial Issues ◽  
Psychosocial Needs ◽  
Physical Problems

Patients with life-limiting illness and their families require the skills of many professionals, but also the support of their community. Psychosocial issues for people with life-limiting and terminal illness are complex and require excellent team work and the ability to look beyond the obvious. Whilst most professionals are comfortable in assessing and supporting even the most intimate of physical problems, assessing and supporting the emotional, social, and spiritual sequelae of terminal illness is challenging. More attention has been given to the psychosocial needs of adults with cancer than for any other group. This new edition of a successful text examines current practice and provision of psychosocial care across the lifespan and includes neonatal palliative care, care of the frail elderly, those with dementia and the marginalized. It is a highly practical text, comprehensively reviewing the current literature and evidence in order to demonstrate good, and better, research-based practice in psychosocial care.

Feasibility of dignity therapy in patients with stage IV colorectal cancer receiving chemotherapy.

2012 ◽  
Vol 30 (4_suppl) ◽  
pp. 671-671
Author(s):  
Maxwell Thomas Vergo ◽  
Halla Sayed Nimeiri ◽  
Mary Frances Mulcahy ◽  
Jamie H. Von Roenn ◽  
Al Bowen Benson ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
End Of Life ◽  
Terminal Illness ◽  
Stage Iv ◽  
Enrollment Rate ◽  
Goals Of Care ◽  
Stage Iv Colorectal Cancer ◽  
Dignity Therapy ◽  
Meaningful Relationships ◽  
Colorectal Cancer Patients

671 Background: Dignity Therapy (DT) is a structured psychotherapeutic interview which allows people to create a permanent document to validate their existence and leave a legacy. It focuses on life review, meaningful relationships, and words of comfort to loved ones. In terminal patients no longer receiving chemotherapy, this intervention improved the majority of patients’ sense of dignity, purpose, and meaning, and also reduced depression and self reported suffering (Chochinov, J Clin Oncol, 2005). This study evaluates the feasibility of DT in patients receiving active chemotherapy. Methods: Outpatients ≥ 18 years of age with metastatic colorectal cancer recently starting second line chemotherapy were recruited. DT was administered, the interview transcribed, and the transcription edited into a proof version. This version was read to the patient and given to them after it was finalized. Main outcome was feasibility as measured by enrollment rate, discontinuation rate, and satisfaction after completing therapy. Other secondary measures included assessments for terminal illness acknowledgement (TIA), symptoms, peacefulness, quality of life, and finally preferences in a hypothetical end-of-life scenario. Results: Overall, there has been a 91% enrollment rate (10 out of 11 approached), 0% discontinuation, and a 100% rate of being satisfied or very satisfied (7 patients). 3 patients were removed due to non-compliance, sedation, or lost data. Of those who completed therapy, > 70% felt it was helpful or very helpful and strongly or very strongly felt it increased their sense of dignity, purpose, and meaning as well as the potential to help their family in the future. Symptoms remained stable over time. Exploratory endpoints included a 33% increase in TIA (p=0.23), no increase in peacefulness (p=0.44), less aggressive goals of care (p=0.28), and decreased distress. Conclusions: DT is a highly satisfying and meaningful intervention for advanced colorectal cancer patients receiving chemotherapy. Given its feasibility, an ongoing randomized wait-list control study should help answer if DT effects TIA, end-of-life goals of care, or distress levels in this population. Funding: ACS-IRG 93-037-15.

Evolving Goals of Care Discussions as Described in Interviews With Individuals With Advanced Cancer and Oncology and Palliative Care Teams

2020 ◽  
pp. 104990912096920
Author(s):  
Ellis C. Dillon ◽  
Amy Meehan ◽  
Catherine Nasrallah ◽  
Steve Lai ◽  
Natalia Colocci ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
Hospice Care ◽  
Depth Information ◽  
Goals Of Care ◽  
Early Integration ◽  
Team Members ◽  
Palliative Care Teams ◽  
Pain Symptoms

Background: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences. Objective: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC). Design: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams. Setting/Subjects: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California. Results: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis (“How much time do I have?”). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were “going downhill.” Conclusion: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.

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