My choices, my wishes: Advance care planning advocacy in the adult oncology population.

6 Background: Working through end-of-life care (EOL) issues with our patients is one of the most challenging aspects of cancer care. Although studies of EOL care interventions that are patient-focused and result in high-quality EOL experiences are increasing, most still do not achieve an EOL experience consistent with preferences. We aimed to provide an intervention for standardized advanced care planning (ACP) documentation and education to improve quality of life (QOL) for patients (pts) with terminal cancer (TC). Methods: Pts with TC (for this study defined as stage IV cancer or metastatic disease) were evaluated retrospectively through our EHR IKnowMed (IKM) before and after an ACP documentation and an education intervention. Descriptive statistics were used to identify and measure utilization of ACP introduction and charting as well as completion of advance directive documentation. Within IKM there are discrete fields for EOL data including ACP discussion, ACP facilitation, documentation of ADs. Education on tool documentation occurred in early 2012. Our ACP program was launched in March 2012. This included an ACP office visit conducted by a practitioner with ACP training, standardized education literature on EOL and ACP, launch of a website with EOL and ACP educational material, recording of ACP documents and documentation of hospice utilization and ACP preferences within our EHR. Results: Baseline characteristics and improvements in ACP introduction, charting, and AD documentation that occurred during our documentation and intervention process can be seen in the Table. Conclusions: Implementation of a standardized ACP program improves utilization and documentation of ACP planning, and documentation of ADs. These interventions improve QOL and health literacy for patients with TC. By incorporating these strategies with definable metrics, strategic intervention can be measured and reported. Further study of the relationships between ACP documentation and patient outcomes is necessary for comprehensive oncology care. [Table: see text]

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Defining the elements of early palliative care (PC) that are associated with patient-reported outcomes (PROs) and the delivery of end-of-life (EOL) care.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.31_suppl.154 ◽

2017 ◽

Vol 35 (31_suppl) ◽

pp. 154-154 ◽

Cited By ~ 1

Author(s):

Michael Hoerger ◽

Jennifer S. Temel ◽

Vicki Jackson ◽

Elyse Park ◽

William F. Pirl ◽

...

Keyword(s):

Quality Of Life ◽

Advanced Cancer ◽

Depression Scale ◽

Treatment Decisions ◽

Study Cohort ◽

Care Planning ◽

Patient Reported ◽

Oncology Care ◽

Eol Care

154 Background: Early PC integrated with oncology care improves quality of life, mood and the delivery of EOL care among patients with advanced cancer, but little is known about which elements of PC practice are associated with such outcomes. The goals of this study were to describe the key elements of early PC across the illness trajectory and examine whether variation in visit content was associated with changes in PROs and the delivery of EOL care. Methods: The study cohort included patients with incurable lung or non-colorectal gastrointestinal cancer who were randomized to early PC integrated with oncology care (n = 171). Patients completed measures of quality of life (Functional Assessment of Cancer Therapy-General, FACT-G) and mood (Hospital Anxiety and Depression Scale, HADS; Patient Health Questionnaire–9, PHQ-9) at baseline and 24 weeks. PC clinicians completed electronic post-visit surveys documenting PC visit content. Data on EOL care were abstracted from electronic health records. We examined variation in visit content over time and used linear and logistic regression to identify whether the percentage of visits emphasizing a given content area was associated with PROs and EOL care. Results: We analyzed 2,921 PC visits, most of which focused on coping (64.2%) and symptom management (74.5%). By 24 weeks, patients who had a higher percentage of visits focused on coping experienced improved quality of life (p = .02) and depression (HADS: p = .002; PHQ-9: p = .005). Having a higher percentage of visits focused on treatment decisions was associated with a reduced odds of new chemotherapy (p = .02), hospitalization (p = .001), and ED admission (p = .04) in the 60 days prior to death. Focusing on advance care planning was associated with an increased odds of receiving hospice care (p = .01) and dying at home (p = .03). Conclusions: PC clinicians’ attention to coping is associated with improvements in PROs, and the focus on treatment decisions and advanced care planning is associated with higher quality EOL care. This study defines the key elements of early PC for patients with advanced cancer and furthers the development and dissemination of this integrated model of care. Clinical trial information: NCT01401907.

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Caregiver perceptions of end-of-life care in patients with high-grade glioma

Neuro-Oncology Practice ◽

10.1093/nop/npaa077 ◽

2020 ◽

Vol 8 (2) ◽

pp. 171-178

Author(s):

John T Fortunato ◽

Meredith Van Harn ◽

Sameah A Haider ◽

Joel Phillips ◽

Tobias Walbert

Keyword(s):

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Care Planning ◽

High Grade ◽

Life Care ◽

Advance Care ◽

The Individual ◽

Eol Care

Abstract Background Patients dying from high-grade gliomas (HGG) suffer from high symptom burden in the end-of-life (EoL) phase. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess caregiver perception on quality of EoL care of HGG patients. Methods Caregivers prospectively participated in the Toolkit After-Death Bereaved Family Member Interview, part of the Toolkit of Instruments to Measure End-of-Life Care (TIME survey). This validated survey assesses EoL care in areas such as physical comfort and emotional support, advance care planning, focus on the individual, attention to family, and coordination of care. The quality of EoL care was measured by domain scores (0 = care was always optimal, 1 = care was always suboptimal) or with a 0-10 scale. Results Of the 55 enrolled family caregivers, 44 completed the interview and rated the overall care high (8.90 ± 1.36/10), perceived that patients’ wishes were respected (9.46 ± 0.95) and that they died in dignity (9.65 ± 0.98). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16), and care coordination (0.11). Attention to family (0.25) needed improvement. Only 41% of caregivers were confident that they knew what to do at the time of death and 46% felt that the healthcare team did not provide them with someone to turn to in distress. Conclusions Caregivers reported high overall satisfaction with EoL HGG care, though attention to family and communication needed improvement. Focus should therefore be on improved caregiver communication to improve EoL care, caregiver burnout, and bereavement in HGG populations.

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ATTITUDES TOWARD AND PREFERENCE FOR ADVANCE CARE PLANNING AMONG OLDER KOREAN AMERICANS

Innovation in Aging ◽

10.1093/geroni/igz038.1513 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S407-S407

Author(s):

Michin Hong ◽

Hyunjun Noh ◽

Kyeongmo Kim

Keyword(s):

Advance Care Planning ◽

Korean Americans ◽

Care Planning ◽

Analysis Process ◽

Advance Care ◽

Group Interviews ◽

Prior Experiences ◽

Eol Care ◽

Older Korean Americans

Abstract Advance care planning (ACP), referring to a decision-making process for end-of-life (EOL) care in advance, is critical in ensuring satisfaction with care and quality of life among patients and caregivers at the EOL. However, Korean Americans consistently report lower levels of ACP engagement compared to whites, indicating their potential vulnerability at the EOL. To gain insight into strategies to address the disparity, this qualitative study explored attitudes toward and preference for ACP among older Korean Americans. We conducted three focus group interviews with 31 older Korean Americans. Through iterative data analysis process, four themes emerged: 1) moderate levels of awareness of and prior experiences with ACP: 2) favorable attitudes toward ACP, while concerned about non-compliance by children: 3) preference for natural dying without life prolonging treatments and pain: and 4) preference for physician-initiated ACP. Our findings suggest the necessity of culturally tailored approaches to promote ACP for this population.

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Advance Care Planning Improves Psychological Symptoms But Not Quality of Life and Preferred End-of-Life Care of Patients With Cancer

Journal of the National Comprehensive Cancer Network ◽

10.6004/jnccn.2018.7106 ◽

2019 ◽

Vol 17 (4) ◽

pp. 311-320 ◽

Cited By ~ 11

Author(s):

Siew Tzuh Tang ◽

Jen-Shi Chen ◽

Fur-Hsing Wen ◽

Wen-Chi Chou ◽

John Wen-Cheng Chang ◽

...

Keyword(s):

Depressive Symptoms ◽

Terminally Ill ◽

Anxiety Symptoms ◽

Care Planning ◽

Patients With Cancer ◽

Terminally Ill Patients ◽

Advance Care ◽

Eol Care ◽

Care Decision

Background: This study was conducted to examine whether a longitudinal advance care planning (ACP) intervention facilitates concordance between the preferred and received life-sustaining treatments (LSTs) of terminally ill patients with cancer and improves quality of life (QoL), anxiety symptoms, and depressive symptoms during the dying process. Patients and Methods: Of 795 terminally ill patients with cancer from a medical center in Taiwan, 460 were recruited and randomly assigned 1:1 to the experimental and control arms. The experimental arm received an interactive ACP intervention tailored to participants’ readiness to engage in this process. The control arm received symptom management education. Group allocation was concealed, data collectors were blinded, and treatment fidelity was monitored. Outcome measures included 6 preferred and received LSTs, QoL, anxiety symptoms, and depressive symptoms. Intervention effectiveness was evaluated by intention-to-treat analysis. Results: Participants providing data had died through December 2017. The 2 study arms did not differ significantly in concordance between the 6 preferred and received LSTs examined (odds ratios, 0.966 [95% CI, 0.653–1.428] and 1.107 [95% CI, 0.690–1.775]). Participants who received the ACP intervention had significantly fewer anxiety symptoms (β, −0.583; 95% CI, −0.977 to −0.189; P= .004) and depressive symptoms (β, −0.533; 95% CI, −1.036 to −0.030; P= .038) compared with those in the control arm, but QoL did not differ. Conclusions: Our ACP intervention facilitated participants’ psychological adjustment to the end-of-life (EoL) care decision-making process, but neither improved QoL nor facilitated EoL care honoring their wishes. The inability of our intervention to improve concordance may have been due to the family power to override patients’ wishes in deeply Confucian doctrine–influenced societies such as Taiwan. Nevertheless, our findings reassure healthcare professionals that such an ACP intervention does not harm but improves the psychological well-being of terminally ill patients with cancer, thereby encouraging physicians to discuss EoL care preferences with patients and involve family caregivers in EoL care decision-making to eventually lead to patient value–concordant EoL cancer care.

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Assisted Living Administrators’ Approaches to Advance Care Planning

Innovation in Aging ◽

10.1093/geroni/igaa057.216 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 66-66

Author(s):

Elise Abken ◽

Alexis Bender ◽

Ann Vandenberg ◽

Candace Kemp ◽

Molly Perkins

Keyword(s):

Advance Care Planning ◽

Assisted Living ◽

Staff Training ◽

Chronically Ill ◽

External Support ◽

Care Plan ◽

Care Planning ◽

Term Care ◽

Advance Care ◽

Eol Care

Abstract Assisted living (AL) communities are increasingly home to frail, chronically ill older adults who remain until death. State laws mandate that AL facilities request copies of any advance care planning documents residents have and make forms available upon request. Using secondary data from a larger study funded by the National Institute on Aging (R01AG047408) that focuses on end-of-life (EOL) care in AL, this project investigated barriers and facilitators to conducting advance care planning in AL. Data included in-depth interviews (of 86 minute average length) with 20 administrators from 7 facilities around the Atlanta metropolitan area and aggregate data collected from each facility regarding facility, staff, and resident characteristics. Findings from thematic analysis of qualitative data showed that key barriers to planning in AL included lack of staff training and reluctance among administrators and families to discuss advance care planning and EOL care. Important facilitators included periodic follow-up discussions of residents’ wishes, often during care plan meetings, educating families about the importance of planning, and external support for staff training and family education from agencies such as hospice and home health. Three study facilities exceeded state requirements to request and store documents by systematically encouraging residents to complete documentation. These facilities, whose administrators discuss advance care planning and residents’ EOL wishes with residents and families during regular care plan meetings, were more likely to have planning documents on file, demonstrating the potential of long-term care communities, such as AL, to successfully promote advance care planning among residents and their family members.

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Perceptions of involvement in advance care planning and emotional functioning in patients with advanced cancer

Journal of Cancer Survivorship ◽

10.1007/s11764-021-01020-y ◽

2021 ◽

Author(s):

Lente L. Kroon ◽

◽

Janneke van Roij ◽

Ida J. Korfage ◽

An K. L. Reyners ◽

...

Keyword(s):

Quality Of Care ◽

Medical Treatment ◽

Advanced Cancer ◽

Advance Care Planning ◽

Emotional Functioning ◽

Solid Cancer ◽

Care Planning ◽

Advance Care ◽

Prospective Longitudinal

Abstract Purpose Advance Care Planning (ACP) is positively associated with the quality of care, but its impact on emotional functioning is ambiguous. This study investigated the association between perceptions of ACP involvement and emotional functioning in patients with advanced cancer. Methods This study analyzed baseline data of 1,001 patients of the eQuiPe study, a prospective, longitudinal, multicenter, observational study on quality of care and quality of life in patients with advanced cancer in the Netherlands. Patients with metastatic solid cancer were asked to participate between November 2017 and January 2020. Patients’ perceptions of ACP involvement were measured by three self-administered statements. Emotional functioning was measured by the EORTC-QLQ-C30. A linear multivariable regression analysis was performed while taking gender, age, migrant background, education, marital status, and symptom burden into account. Results The majority of patients (87%) reported that they were as much involved as they wanted to be in decisions about their future medical treatment and care. Most patients felt that their relatives (81%) and physicians (75%) were familiar with their preferences for future medical treatment and care. A positive association was found between patients’ perceptions of ACP involvement and their emotional functioning (b=0.162, p<0.001, 95%CI[0.095;0.229]) while controlling for relevant confounders. Conclusions Perceptions of involvement in ACP are positively associated with emotional functioning in patients with advanced cancer. Future studies are needed to further investigate the effect of ACP on emotional functioning. Trial registration number NTR6584 Date of registration: 30 June 2017 Implications for Cancer Survivors Patients’ emotional functioning might improve from routine discussions regarding goals of future care. Therefore, integration of ACP into palliative might be promising.

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Exploratory Study of Advance Care Discussions Among Chinese American and White Stage IV Cancer Patients at an American Tertiary Medical Center

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211012614 ◽

2021 ◽

pp. 104990912110126

Author(s):

Avery Caz Glover ◽

Courtney Schroeder ◽

Emma Ernst ◽

Tamara Vesel

Keyword(s):

Cancer Patients ◽

Exploratory Study ◽

Stage Iv ◽

Chinese American ◽

Chinese Americans ◽

Do Not Resuscitate ◽

Essential Components ◽

Advance Care ◽

Stage Iv Cancer ◽

White Patients

Purpose: Timely advance care discussions are essential components of quality care for diverse populations; however, little is known about these conversations among Chinese American cancer patients. This exploratory study describes differences in advance care discussions and planning between Chinese American and White advanced cancer patients. Methods: We collected data for 63 Chinese American and 63 White stage IV cancer patients who died between 2013 and 2018. We compared: frequency and timing of prognosis, goals of care (GOC), and end-of-life care (EOLC) discussions in the final year of life; family inclusion in discussions; healthcare proxy (HCP) identification; do not resuscitate (DNR) order, do not intubate (DNI) order, and other advance directive (AD) completion. We did not conduct statistical tests due to the study’s exploratory nature. Results: Among Chinese American and White patients, respectively, 76% and 71% had prognosis, 51% and 56% had GOC, and 89% and 84% had EOLC discussions. Prognosis, GOC, and EOLC discussions were held a median of 34.0, 15.5, and 34.0 days before death among Chinese American and 17.0, 13.0, and 24.0 days before death among White patients. Documentation rates among Chinese American and White patients were 79% and 76% for DNRs, 81% and 71% for DNIs, 79% and 81% for HCPs, and 52% and 40% for other ADs. Conclusions: Findings suggest that Chinese Americans had similar rates of advance care discussions, completed conversations earlier, and had similar to higher rates of AD documentation compared to White patients. Further studies are needed to confirm our preliminary findings.

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Association of advance care planning with place of death and utilisation of life-sustaining treatments in deceased patients at Taipei City Hospital in Taiwan

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002520 ◽

2020 ◽

pp. bmjspcare-2020-002520

Author(s):

Yung-Feng Yen ◽

Ya-Ling Lee ◽

Hsiao-Yun Hu ◽

Wen-Jung Sun ◽

Ming-Chung Ko ◽

...

Keyword(s):

Cohort Study ◽

Advance Care Planning ◽

Place Of Death ◽

Care Planning ◽

City Hospital ◽

Taipei City ◽

Advance Care ◽

Eol Care ◽

To Receive ◽

At Home

ObjectiveEvidence is mixed regarding the impact of advance care planning (ACP) on place of death. This cohort study investigated the effect of ACP programmes on place of death and utilisation of life-sustaining treatments for patients during end-of-life (EOL) care.MethodsThis prospective cohort study identified deceased patients between 2015 and 2016 at Taipei City Hospital. ACP was determined by patients’ medical records and defined as a process to discuss patients’ preferences with respect to EOL treatments and place of death. Place of death included hospital or home death. Stepwise logistic regression determined the association of ACP with place of death and utilisation of life-sustaining treatments during EOL care.ResultsOf the 3196 deceased patients, the overall mean age was 78.6 years, and 46.5% of the subjects had an ACP communication with healthcare providers before death. During the study follow-up period, 166 individuals died at home, including 98 (6.59%) patients with ACP and 68 (3.98%) patients without ACP. After adjusting for sociodemographic factors and comorbidities, patients with ACP were more likely to die at home during EOL care (adjusted OR (AOR)=1.71, 95% CI 1.24 to 2.35). Moreover, patients with ACP were less likely to receive cardiopulmonary resuscitation (AOR 0.36, 95% CI 0.25 to 0.51) as well as intubation and mechanical ventilation support (AOR 0.54, 95% CI 0.44 to 0.67) during the last 3 months of life.ConclusionPatients with ACP were more likely to die at home and less likely to receive life-sustaining treatments during EOL care.

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Perubahan Status Koagulasi Pasien Kanker Padat Pasca Kemoterapi di Indonesia: Sebuah Studi Prospektif

Jurnal Penyakit Dalam Indonesia ◽

10.7454/jpdi.v7i1.387 ◽

2020 ◽

Vol 7 (1) ◽

pp. 2

Author(s):

Noorwati Sutandyo ◽

Lyana Setiawan

Keyword(s):

Cancer Patients ◽

Prospective Cohort ◽

Stage Iv ◽

Stage Iii ◽

Solid Cancer ◽

Significant Difference ◽

Before And After ◽

Coagulation Status ◽

Stage Iv Cancer ◽

D Dimer

Pendahuluan. Hiperkoagulasi merupakan faktor yang mendasari tingginya mortalitas akibat kejadian tromboemboli vena pada pasien kanker. Kemoterapi merupakan salah satu faktor yang diduga berkontribusi terhadap status hiperkoagulasi pada pasien kanker. Studi ini bertujuan untuk mengevaluasi perubahan status koagulasi yang ditandai dengan kadar D-dimer pada pasien kanker yang menjalani kemoterapi.Metode. Studi ini merupakan studi kohort prospektif di Pusat Kanker Nasional Indonesia yang melibatkan pasien kanker yang sudah terkonfirmasi melalui pemeriksaan histopatologi, dan memulai kemoterapi pada periode Mei hingga Juli 2018. Perubahan status koagulasi dinilai melalui kadar D-dimer plasma. Kadar D-dimer diukur sebelum dan 7 hari setelah kemoterapi. Analisis statistik menggunakan uji t berpasangan untuk menilai kemaknaan perubahan kadar D-dimer plasma sebelum dan setelah kemoterapi.Hasil. Sejumlah 89 pasien memenuhi kriteria inklusi, yang mana 74,2% adalah perempuan dan hampir separuh dari keseluruhan subjek terdiagnosis kanker payudara (44,9%). Mayoritas subjek (69,6%) terdiagnosis pada stadium III atau IV. Sejumlah 12,4% dari subjek mendapatkan kemoterapi berbasis cisplatin. Terdapat perbedaan yang bermakna antara kadar D-dimer sebelum dan setelah kemoterapi (p = 0,05). Studi ini juga menemukan perbedaan bermakna kadar D-dimer sebelum dan sesudah kemoterapi pada pasien kanker stadium III (t(35) = 2,48, p = 0,02) dan stadium IV (t(25) = 2,14, p = 0,04). Tidak terdapat perbedaan bermakna antara kadar D-dimer sebelum dan setelah kemoterapi pada pasien stadium I dan II. Analisis lanjutan berdasarkan kelompok kemoterapi menunjukkan bahwa terdapat perubahan kadar D-dimer yang bermakna pada kelompok yang mendapatkan kemoterapi cisplatin (t(10) = 2,31, p = 0,04), namun tidak pada kelompok yang mendapat kemoterapi non-cisplatin (t(77) = 1,50, p = 0,14).Simpulan. Terdapat perbedaan bermakna status koagulasi yang ditandai dengan kadar D-dimer 7 hari pasca mendapatkan kemoterapi, khususnya pada pasien kanker stadium III atau IV dan mendapatkan kemoterapi berbasis cisplatin. Kata Kunci: Cisplatin, kanker, kemoterapi, status koagulasiChange of Coagulation Status in Solid Cancer Patients Undergoing Chemotherapy in Indonesia: A Prospective Cohort StudyIntroduction. Cancer-associated hypercoagulability was an underlying factor of high mortality of cancer due to venous thromboembolism. Chemotherapy is proposed as one of the contributing factors of the hypercoagulable state. We aim to evaluate the change of coagulation status, which was marked by D-dimer level, in cancer patients receiving chemotherapy.Methods. This is a prospective cohort study in Indonesian national cancer center which involves all adult histologically-confirmed-cancer patients who started chemotherapy between May and July 2018. The coagulation status is assessed by plasma of D-dimer level. We measured D-dimer before chemotherapy and one week after chemotherapy. Paired t-test was performed to assess the significant difference in D-dimer levels before and after chemotherapy.Results. A total of 89 patients fulfilled the eligibility criteria, of whom 74.2% were female and almost half of total subjects (44.9%) were breast cancer patients. Majority of subjects (69.6%) were stage III or stage IV cancer. There were 12.4% of subjects received cisplatin-based chemotherapy. There was a marginally significant difference in plasma level of D-dimers before and after chemotherapy (p = 0.05). We also found significant differences between D-dimer level before and after chemotherapy in stage III patients (t(35) = 2.48, p = 0.02) and stage IV patients (t(25) = 2.14, p = 0.04). There was no significant difference between D-dimer level before and after chemotherapy in stage I and stage II patients. Subgroup analyses based on chemotherapy agents showed that there was significant D-dimer change in cisplatin-based chemotherapy subjects (t(10) = 2.31, p = 0.04), but not in non-cisplatin-based chemotherapy subjects (t(77) = 1,50, p = 0.14).Conclusion. Compared to before chemotherapy, there is a significant difference of coagulation status marked by plasma D-dimer level one week after chemotherapy, particularly in patients with stage III or stage IV cancer and in patients receiving cisplatin-based chemotherapy.

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