Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer.

Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective: To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participants: This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Exposure: Stage IV or recurrent cancer. Main Outcomes and Measures: Care priorities. Results: Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. Conclusions and Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care.

Family members' experience improves with care preference documentation in home based primary care.

BACKGROUND: The Veterans Health Administration (VA) implemented the comprehensive life-sustaining treatment (LST) Decisions Initiative to provide training and standardize documentation of goals of care and LST preferences for seriously ill Veterans to improve end-of-life (EOL) outcomes. LST documentation is expected for all Home-Based Primary Care (HBPC) Veterans because they are at high risk of hospitalization and mortality. METHODS: A retrospective, cross-sectional analysis compared associations between Bereaved Family Survey (BFS) EOL care ratings and LST documentation. Participants were Veterans who died August 1, 2018 through September 30, 2019 in one of 55 VA HBPC programs. Regression modeling generated odds for key BFS outcomes. LST template completion rate was plotted by month to understand the interaction between time, LST completion rate, and EOL care family ratings. RESULTS: LST preferences were documented for 39% of HBPC Veterans. Family members rated overall EOL care as excellent for 53% of Veterans but significant divergence in BFS ratings occurred during the last 7 months of the study with 60% of family members of LST completers rating care as excellent compared with 48% for Veterans lacking LST documentation (p = 0.003). The adjusted odds of rating overall care in the final month of life as excellent was higher among those with a completed LST template (1.64 95% CI 1.19, 2.26). CONCLUSIONS: Higher rates of LST documentation were associated with more favorable ratings of EOL but not in initial months following implementation of the comprehensive initiative; however, LST documentation rates were lower than expected among HBPC Veterans. Following an initial period of implementation of a comprehensive national initiative to promote Veteran choice about care during serious illness, documented LST preferences were associated with better family ratings of EOL care. HBPC clinicians may improve the bereaved family experience by using LSDTI tools and training to elicit and document preferences.

Life-Sustaining Treatment States in Korean Cancer Patients after Enforcement of Act on Decisions on Life-Sustaining Treatment for Patients at the End of Life.

PURPOSE: In Korea, the "Act on Hospice and Palliative Care and Decisions on Life-sustaining Treatment for Patients at the End of Life" was enacted on February 4, 2018. This study was conducted to analyze the current state of life-sustaining treatment decisions based on National Health Insurance Service (NHIS) data after the law came into force. MATERIALS AND METHODS: The data of 173,028 cancer deaths were extracted from NHIS qualification data between November 2015 and January 2019. RESULTS: The number of cancer deaths complied with the law process was 14,438 of 54,635 cases (26.4%). The rate of patient self-determination was 49.0%. The patients complying with the law process have used a hospice center more frequently (28% vs. 14%). However, the rate of intensive care unit (ICU) admission was similar between the patients who complied with and without the law process (ICU admission, 23% vs. 21%). There was no difference in the proportion of patients who had undergone mechanical ventilation and hemodialysis in the comparative analysis before and after the enforcement of the law and the analysis according to the compliance with the law. The patients who complied with the law process received cardiopulmonary resuscitation at a lower rate. CONCLUSION: The law has positive effects on the rate of life-sustaining treatment decision by patient's determination. However, there was no sufficient effect on the withholding or withdrawing of life-sustaining treatment, which could protect the patient from unnecessary or harmful interventions.

The Situation of Life-Sustaining Treatment One Year after Enforcement of the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life in Korea: Data of National Agency for Management of Life-Sustaining Treatment.

PURPOSE: The "Act on Hospice and Palliative Care and Decisions on Life-Sustaining Treatment for Patients at the End-of-Life" was enacted on February 3, 2016 and went into effect on February 4, 2018 in Korea. This study reviewed the first year of determination to life-sustaining treatment (LST) through data analysis of the National Agency for Management of Life-Sustaining Treatment. MATERIALS AND METHODS: The National Agency for Management of LST provided data between February 4, 2018 and January 31, 2019 anonymously from 33,549 patients. According to the forms patients were defined as either elf-determinants or family-determinants. RESULTS: The median age of the patient was 73 and the majority was male (59.9%). Cancer patients were 59% and self-determinants were 32.1%. Cancer patients had a higher rate of self-determinants than non-cancer (47.3% vs. 10.1%). Plan for hospice service was high in cancer patients among self-determinants (81.0% vs. 37.5%, p < 0.001). In comparison to family-determinants, self-determinants were younger (median age, 67 years vs. 75 years; p < 0.001) and had more cancer diagnosis (87.1% vs. 45.9%, p < 0.001). Decision of withholding or withdrawing of LSTs in cancer patients was higher than non-cancer patients in four items. CONCLUSION: Cancer patients had a higher rate in self-determination and withholding or withdrawing of LSTs than non-cancer patients. Continued revision of the law and education of the public will be able to promote withdrawing or withholding the futile LSTs in patients at end-of-life. Further study following the revision of the law should be evaluated to change of end-of-life care.

Implication of the Life-Sustaining Treatment Decisions Act on End-of-Life Care for Korean Terminal Patients.

PURPOSE: Life-sustaining treatment (LST) decisions for patients and caregivers at the end-of-life (EOL) process are supported by the "Act on Hospice and Palliative Care and Decisions on LST for Patients at the EOL," enforced in February 2018. It remains unclear whether the act changes EOL decisions and LST implementation in clinical practice. For this study, we investigated patients' decision-making regarding LSTs during the EOL process since the act's enforcement. Materials and Methods: Retrospective reviews were conducted on adult patients who were able to decide to terminate LST and died at Seoul National University Hospital between February 5, 2018, and February 5, 2019. We examined demographics, who made the decisions, the type and date of documentation confirming patient's LST, and whether the LST was withheld or withdrawn. RESULTS: Of 809 patients who were enrolled, 29% (n=231) completed forms regarding LST themselves, and 71% (n=578) needed family members to decide. The median time from confirmation of the EOL process to death and from the Advance Statement to death were 2 and 5 days, respectively (both ranges, 0 to 244). In total, 90% (n=727) of patients withheld treatment, and 10% (n=82)withdrew it. We found a higher withdrawal rate when family members made the decisions (13.3% vs. 1.7%, p < 0.001). CONCLUSION: After the act's enforcement, withdrawing LSTs became lawful and self-determination rates increased. Family members still make 71% of decisions regarding LSTs, but these are often inconsistent with the patients' wishes; thus, further efforts are needed to integrate the new act into clinical practice.

Differing Thresholds for Overriding Parental Refusals of Life-Sustaining Treatment.

When should doctors seek protective custody to override a parent's refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25-50%. This is not the case when the treatment in question is open heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40-50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations.

Ethics of life-sustaining treatment in locked-in syndrome: A Chinese survey.

BACKGROUND: Locked-in syndrome (LIS) characterizes individuals who have experienced pontine lesions, who have limited motor output but with preserved cognitive abilities. Despite their severe physical impairment, individuals with LIS self-profess a higher quality of life than generally expected. Such third-person expectations about LIS are shaped by personal and cultural factors in western countries. OBJECTIVE: We sought to investigate whether such opinions are further influenced by the cultural background in East Asia. We surveyed attitudes about the ethics of life-sustaining treatment in LIS in a cohort of medical and non-medical Chinese participants. RESULTS: The final study sample included 1545 respondents: medical professionals (n=597, 39%), neurologists (n=303, 20%), legal professionals (n=276, 18%) and other professionals (n=369, 24%), including 180 family members of individuals with LIS. Most of the participants (70%), especially neurologists, thought that life-sustaining treatment could not be stopped in individuals with LIS. It might be unnecessary to withdraw life-sustaining treatment, because the condition involved is not terminal and irreversible, and physical treatment can be beneficial for the patient. A significant proportion (59%) of respondents would like to be kept alive if they were in that condition; however, older people thought the opposite. Families experience the stress of caring for individuals with LIS. The mean (SD) quality of life score for relatives was 0.73 (2.889) (on a -5, +5 scale), which was significantly lower than that of non-relatives, 1.75 (1.969) (P<0.001). CONCLUSIONS: Differences in opinions about end of life in LIS are affected by personal characteristics. The current survey did not identify a dissociation between personal preferences and general opinions, potentially because of a social uniformity in China where individualism is less pronounced. Future open-ended surveys could identify specific needs of caregivers so that strategic interventions to reduce ethical debasement are designed.

Mothers' Voices Related to Caregiving: The Transition of a Technology-Dependent Infant from the NICU to Home.

PURPOSE: The transition from the NICU to home is a complicated, challenging process for mothers of infants dependent on lifesaving medical technology, such as feeding tubes, supplemental oxygen, tracheostomies, and mechanical ventilation. The study purpose was to explore how these mothers perceive their transition experiences just prior to and during the first three months after initial NICU discharge. DESIGN: A qualitative, descriptive, longitudinal design was employed. SAMPLE: Nineteen mothers of infants dependent on lifesaving technology were recruited from a large Midwest NICU. MAIN OUTCOME VARIABLE: Description of mothers' transition experience. RESULTS: Three themes were identified pretransition: negative emotions, positive cognitive-behavioral efforts, and preparation for life at home. Two posttransition themes were negative and positive transition experiences. Throughout the transition, the mothers expressed heightened anxiety, fear, and stress about life-threatening situations that did not abate over time despite the discharge education received.

Factors Relating to Caregivers' Preference for Advance Care Planning of Patients in Japan: A Cross-Sectional Study.

OBJECTIVES: The aim of this study was to examine the preferences of home caregivers on patient advance care planning (ACP), including life-sustaining treatment (LST) and the factors relating to these preferences. BACKGROUND: Personalized ACP aims to respect the autonomy and choices of terminally ill patients regarding end-of-life care. However, there have been cases wherein doctors must instead discuss ACP with surrogates (including caregivers) for various reasons such as dementia, intractable neurologic diseases, and cerebrovascular accident. METHODS: In this cross-sectional study, self-written questionnaires (filled by individuals themselves) were distributed to 506 in-home caregivers in 6 Japanese prefectures; the questionnaires contained items on caregiver and patient demographics, number of people living together in a caregiver's home (aside from patients), care duration, comprehension level of doctors' explanations regarding their patient's condition, patient diseases, whether caregivers have or have not told patients about their disease, level of nursing care, and caregiver LST preference (preferred or not preferred). The questionnaire package also contained the Burden Index of Caregiver-11, Patient Health Questionnaire-9, and Short Form-8 Health Survey. RESULTS: Valid responses were obtained from 309 caregivers. More than half of them were not sure of their patient's LST preference. Sex, number of people living together in a care home, comprehension level of doctors' explanations, and care duration were found to be the significant factors relating to caregivers' LST preference (P < .05). CONCLUSION: Health providers should be cognizant of the background factors relating to caregiver ACP preference when deciding on LST for terminal patients.

Evaluation of the Interrater Reliability of End-of-Life Medical Orders in the Physician Orders for Life-Sustaining Treatment Form.

Importance: Despite its spread in much of the United States and increased international interest, the Physician Orders for Life-Sustaining Treatment (POLST) paradigm still lacks supporting evidence. The interrater reliability of the POLST form to translate patients' values and preferences into medical orders for care at the end of life remains to be studied. Objective: To assess the interrater reliability of the medical orders documented in POLST forms. Design, Setting, and Participants: This cross-sectional study was conducted in a public university hospital in southeastern Brazil. Two independent researchers interviewed the same patients or decision-making surrogates (n = 64) during a single episode of hospitalization within a time frame of 1 to 7 days. Eligible participants were hospitalized adults aged 21 years or older who were expected to remain hospitalized for at least 4 days and whose attending physician responded no to the question, Would I be surprised if this patient died in the next year? Data collection occurred between November 1, 2015, and September 20, 2016, and first data analyses were performed on October 3, 2016. Main Outcomes and Measures: Interrater reliability as measured by κ statistics. Results: Of the 64 participants interviewed in the study, 53 (83%) were patients and 11 (17%) were surrogates. Patients' mean (SD) age was 64 (14) years, and 35 patients (55%) and 8 surrogates (73%) were women. Overall, in 5 cases (8%), disagreement in at least 1 medical order for life-sustaining treatment was found in the POLST form, changing from the first interview to the second interview. The κ statistic for cardiopulmonary resuscitation was 0.92 (95% CI, 0.80-1.00); for level of medical intervention, 0.89 (95% CI, 0.76-1.00); and for artificially administered nutrition, 0.92 (95% CI, 0.83-1.00). Conclusions and Relevance: The high interrater reliability of the medical orders in POLST forms appears to offer further support for this advance care planning paradigm; in addition, the finding that this interrater reliability was not 100% underscores the need to ensure that patients or their surrogates have decision-making capacity and to confirm that the content of POLST forms accurately reflects patients' current treatment preferences.

End-of-life decisions: A retrospective study in a tertiary care teaching hospital in India.

Background & objectives: In developing countries like India, there is a lack of clarity regarding the factors that influence decisions pertaining to life supports at the end-of-life (EOL). The objectives of this study were to assess the factors associated with EOL-care decisions in the Indian context and to raise awareness in this area of healthcare. Methods: This retrospectively study included all patients admitted to the medical unit of a tertiary care hospital in southern India, over one year and died. The baseline demographics, economic, physiological, sociological, prognostic and medical treatment-related factors were retrieved from the patient's medical records and analysed. Results: Of the 122 decedents included in the study whose characteristics were analyzed, 41 (33.6%) received full life support and 81 (66.4%) had withdrawal or withholding of some life support measure. Amongst those who had withdrawal or withholding of life support, 62 (76.5%) had some support withheld and in 19 (23.5%), it was withdrawn. The documentation of the disease process, prognosis and the mention of imminent death in the medical records was the single most important factor that was associated with the EOL decision (odds ratio - 0.08; 95% confidence interval, 0.01-0.74; P=0.03). Interpretation & conclusions: The documentation of poor prognosis was the only factor found to be associated with EOL care decisions in our study. Prospective, multicentric studies need to be done to evaluate the influence of various other factors on the EOL care.

The POLST Paradox: Opportunities and Challenges in Honoring Patient End-of-Life Wishes in the Emergency Department.

Physician Orders for Life-Sustaining Treatment forms convert patient wishes into physician orders to direct care patients receive near the end of life. Recent evidence of the challenges and opportunities for honoring patient end-of-life wishes in the emergency department (ED) is presented. The forms can be very helpful in directing whether cardiopulmonary resuscitation and intubation are desired in the first few minutes of a patient's presentation. After initial stabilization, understanding the intent of end-of-life orders and the scope of further interventions requires discussion with the patient or a surrogate. The emergency medicine provider must be committed both to honoring initial resuscitation orders and to the conversations required to narrow the gap between ED care and patient wishes so that people receive care best aligned with their wishes.

What determines the timing of discussions on forgoing anticancer treatment? A national survey of medical oncologists.

PURPOSE: End-of-life discussions (EOLd) including the option of forgoing anticancer treatment infrequently occur until treatment options have been exhausted for advanced cancer patients. We aimed to identify oncologist-related factors contributing to the timing of discussing the option of forgoing anticancer treatment. METHODS: In this nationwide survey of 864 medical oncologists, we asked about physicians' attitudes toward the timing of discussing the option of forgoing anticancer treatment for a simulated patient with newly diagnosed metastatic cancer, physicians' experience of EOLd, perceptions of a good death, and beliefs. Multivariate analyses identified determinants of early discussions. RESULTS: Among 490 physicians (response rate = 57%), 167 (35%) would discuss the option of forgoing anticancer treatment "now (at the diagnosis)." Physicians' attitudes toward discussing the option "now" were significantly correlated with a greater physician-perceived importance of life completion (odds ratio (OR) = 1.30, 95%CI = 1.00-1.69, p = 0.048) and dying in a preferred place (OR = 1.29, 95%CI = 1.01-1.65, p = 0.045) for a good death, and not perceiving EOLd as being severely distressing for patients/families (OR = 0.70, 95%CI = 0.54-0.95, p = 0.021). In multivariate analyses, independent determinants of the attitude toward discussing the option now included a greater physician-perceived importance of life completion for a good death (OR = 1.38, 95%CI = 1.05-1.81, p = 0.019), and not perceiving EOLd as being severely distressing for patients/families (OR = 0.70, 95%CI = 0.52-0.94, p = 0.017). CONCLUSIONS: Reflection by oncologists on their own perception regarding a good death and beliefs about EOLd may help oncologists individualize the timing of discussing the option of forgoing anticancer treatment.

Evolution and Predictors of Patient-Caregiver Concordance on States of Life-Sustaining Treatment Preferences over Terminally Ill Cancer Patients' Last Six Months of Life.

BACKGROUND: Patient-caregiver concordance on end-of-life (EOL) care preferences is poor, but changes in this concordance have not been longitudinally explored as patient death approaches, potentially distorting the extent of concordance. Cross-sectional studies cannot disentangle whether the extent of concordance is facilitated or hindered by dyads' specific preferences, prognostic awareness, physical and psychological well-being, and quality of life, or whether these variables were enhanced or worsened by patient-caregiver concordance on EOL care preferences. OBJECTIVE: To examine the evolution of and factors facilitating or hindering patient-caregiver concordance on life-sustaining treatment (LST) preferences over cancer patients' last six months. DESIGN: Longitudinal study design. METHODS/SUBJECTS: Patient-caregiver concordance on LST preference states (patterns) was examined among 215 cancer patient-caregiver dyads in patients' last six months by hidden Markov modeling. Concordance on LST preference states was determined by percent agreement and kappa coefficients. Predictors of concordance on LST preference states were tested by hierarchical generalized linear modeling with logistic regression, with concordance and time-varying, modifiable independent variables arranged in a distinct time sequence. RESULTS: Patient-caregiver concordance on LST preference states was poor and improved only slightly over cancer patients' last six months. Concordance on LST preference states was significantly more likely in patients with greater physical symptom distress. Caregivers were more likely to concur with their relative's LST preference states if caregivers uniformly rejected all LSTs or accepted nutritional support while rejecting other aggressive LSTs for their relative. DISCUSSION/CONCLUSION: Patient symptom distress and caregiver rejection of aggressive LSTs predicted greater patient-caregiver concordance on LST preference states in patients' last six months. To encourage patients and caregivers to discuss LST preferences, clinicians should facilitate caregivers' understanding of patients' LST preferences and LST efficacy at EOL and adjustment to their beloved's inevitable death when his/her physical symptoms still wax and wane, thus providing personalized and value-concordant EOL care for dying cancer patients.