BACKGROUND: Combining orders for do-not-resuscitate (DNR) for cardiac arrest with do-not-intubate (DNI) orders into a DNR/DNI code status is not evidence-based practice and may violate patient autonomy and informed consent when providers discuss intubation only in the context of CPR.
RESEARCH QUESTION: How often do providers refer to patients with a DNR order as "DNR/DNI" without documentation of refusal of intubation for non-arrest situations?
STUDY DESIGN AND METHODS: Retrospective observational study of adults (18 years or older) hospitalized in a Level 1 trauma/academic hospital between July 2017 and June 2018 inclusive with DNR orders placed during hospitalization RESULTS: Of 422 hospitalized adults with DNR orders, 261 (61.9%) had code status written in progress notes as DNR/DNI. Providers' use of the term DNR/DNI in progress notes was significantly (OR 2.21 99% CI 1.12 - 4.37) more common on medical hospital services (hospitalist, family medicine, internal medicine) than on non-medical ward services (medical/surgical intensive care units, surgery, psychiatry, neurology services).Of 261 "DNR/DNI"patients, providers did not document informed refusal of intubation for non-arrest situations for 68 (26.0%) of patients. By comparison, of 161 patients where providers documented code status in progress notes as DNR alone, 69 (42.9%) did have documentation of refusal of intubation for non-arrest events. Therefore, if a DNR/DNI code status was used in a non-arrest emergency to determine whether to intubate a patient, 68 (16.1%) of 422 patients could inappropriately be denied intubation without informed refusal (or despite their informed acceptance), and 69 (16.4%) could inappropriately be intubated despite their documented refusal of intubation.
INTERPRETATION: Conflation of DNR and DNI into DNR/DNI does not reliably distinguish patients who refuse or accept intubation for indications other than cardiac arrest, and thus may inappropriately deny desired intubation for those who would accept it, and inappropriately impose intubation on patients who would not.
This research study aimed to describe preferences about factors related to receiving information regarding medical treatments and palliative care (PC) options for adult patients with a poor prognosis and/or their primary decision maker. A single-group descriptive study design and content analysis were utilized. Seven trained registered nurse (RN) study team members conducted interviews to obtain narrative data. All study participants preferred to learn PC services earlier in the illness trajectory and desired to learn about this service from nurses. Most reported a desire to have spouses and family involved in decisions about PC. Nearly all wanted to understand PC options ahead of time should treatment not go as planned.
Background: Cervical cancer is mostly diagnosed at advanced stages among the majority of women in low-income settings, with palliative care being the only feasible form of care. This study was aimed at investigating palliative care knowledge and access among women with cervical cancer in Harare, Zimbabwe.
Methods: Sequential mixed methods design was used, consisting of two surveys and a qualitative inquiry. A census of 134 women diagnosed with cervical cancer who visited two cancer treating health facilities and one palliative care provider in Harare between January and April, 2018 were enrolled in the study. Seventy-eight health workers were also enrolled in a census in the respective facilities for a survey. Validated structured questionnaires in electronic format were used for both surveys. Descriptive statistics were generated from the surveys after conducting univariate analysis using STATA. Qualitative study used interview/discussion guides for data collection. Thematic analysis was conducted for qualitative data.
Results: Mean ages of patients and health workers in the surveys were 52 years (SD = 12) and 37 years (SD = 10,respectively. Thirty-two percent of women with cervical cancer reported knowledge of where to seek palliative care. Sixty-eight percent of women with cervical cancer had received treatment, yet only 13% reported receiving palliative care. Few women with cervical cancer associated treatment with pain (13%) and side effects (32%). More women associated cervical cancer with bad smells (81%) and death (84%). Only one of the health workers reported referring patients for palliative care. Seventy-six percent of health workers reported that the majority of patients with cervical cancer sourced their own analgesics from private pharmacies. Qualitative findings revealed a limited or lack of cervical cancer knowledge among nurses especially in primary health care, the existence of stigma among women with cervical cancer and limited implementation of palliative policy.
Conclusions: This study revealed limited knowledge and access to palliative care in a low-income setting due to multi-faceted barriers. These challenges are not unique to the developing world and they present an opportunity for low-income countries to start considering and strategizing the integration of oncology and palliative care models in line with international recommendations.
Context: Increasing emphasis on patient-centered care has led to highlighted importance of shared decision making, which better aligns medical decisions with patient care preferences. Effective shared decision making in metastatic breast cancer (MBC) treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences.
Objectives: To assess MBC patient and provider perspectives on the role of prognostic information in treatment decision making.
Methods: We conducted semi-structured interviews with MBC patients and community oncologists and separate focus groups involving lay navigators, nurses, and academic oncologists. Qualitative analysis utilized a content analysis approach that included a constant comparative method to generate themes.
Results: Of 20 interviewed patients with MBC, 30% were African American. Academic oncologists were mostly women (60%), community oncologists were all Caucasian, and nurses were all women and 28% African American. Lay navigators were all African American and predominately women (86%). Five emergent themes were identified. (1) Most patients wanted prognostic information but differed in when they wanted to have this conversation, (2) Emotional distress and discomfort was a critical reason for not discussing prognosis, (3) Religious beliefs shaped preferences for prognostic information, (4) Health care professionals differed on prognostic information delivery timing, and (5) Providers acknowledged that an individualized approach taking into account patient values and preferences would be beneficial.
Conclusion: Most MBC patients wanted prognostic information, yet varied in when they wanted this information. Understanding why patients want limited or unrestricted prognostic information can inform oncologists' efforts toward shared decision making.
Background: Communication in do not resuscitate (DNR) and artificial nutrition and hydration (ANH) at the end of life is a key component of advance care planning (ACP) which is essential for patients with advanced cancer to have cares concordant with their wishes. The SOP model (Shared decision making with Oncologists and Palliative care specialists) aimed to increase the rate of documentation on the preferences for DNR and ANH in patients with advanced cancer.
Methods: The SOP model was implemented in a national cancer treatment center in Taiwan from September 2016 to August 2018 for patients with advanced cancer visiting the oncology outpatient clinic. The framework was based on the model of shared decision making as “choice talk” initiated by oncologists with “option talk” and “decision talk” conducted by palliative care specialists.
Results: Among 375 eligible patients, 255 patients (68%) participated in the model testing with the mean age of 68.5 ± 14.7 years (mean ± SD). Comparing to 52.3% of DNR documentation among patients with advanced cancer who died in our hospital, the rate increased to 80.9% (206/255) after the decision talk in our model. Only 6.67% (n = 17) of the participants documented their preferences on ANH after the model. A worse Eastern Cooperative Oncology Group Performance Status was the only statistically significant associating factor with a higher rate of DNR documentation in the multiple logistic regression model.
Conclusions: The SOP model significantly increased the rate of DNR documentation in patients with advanced cancer in this pilot study. Dissemination of the model could help the patients to receive care that is concordant with their wishes and be useful for the countries having laws on ACP.
Background: As of 2019, ten jurisdictions in the United States have authorized physicians to prescribe a lethal dose of medication to a terminally ill patient for the purpose of hastening death. Relatively little bioethics scholarship has addressed the question of whether physicians have an obligation to inform qualifying patients about aid-in-dying (AID) in permissive jurisdictions and little is known about providers' actual communication practices with respect to this issue.
Methods: One hundred and forty-four in-depth, semi-structured interviews were conducted and analyzed using an inductive analytic approach as part of the Vermont Study on Aid-in-Dying.
Results: Seventeen respondents, 14 physicians and 3 nurse practitioners, met the inclusion criteria for this sub-study. Eleven respondents indicated that they at least sometimes inform patients about AID. Respondents described multiple factors that influence whether or not they might initiate discussions of AID, including the importance of informing patients of their options for end-of-life care, worries about undue influence, and worries about the potential effects on the patient-provider relationship. For those providers who do initiate discussion of AID at least some of the time, attention to the particulars of each individual patient's situation and the context of the discussion appear to play a role in shaping communication about AID.
Conclusions: While initiating a clinical discussion of AID is undoubtedly challenging, our study provides compelling descriptive evidence that some medical providers who support AID do not unilaterally follow the conventional bioethics wisdom holding that they ought to wait for patients to introduce the topic of AID. Future research should investigate how to approach these discussions so as to minimize ethical worries about undue influence or potential negative consequences.
Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information.
Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis.
Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record.
Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.
BACKGROUND: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed.
OBJECTIVE: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care.
DESIGN: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time.
RESULTS: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD's physicians (25% in 2012 vs 45% in 2018; P = .027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD's prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P = .015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P = .39) felt that they were knowledgeable about PC.
CONCLUSIONS: Prognostic discussions between caregivers of PwD and the PwD's physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.
This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.
Whether because of a cultural pattern or personal preference, palliative care clinicians encounter persons approaching the end of life who wish to limit or forego prognostic information relating to their situation. This scenario has received attention in a recent motion picture as well as a newly available advance directive modification-the Prognosis Declaration form. The ordinary expectation for end-of-life shared decision-making with a capable person is clinician disclosure of the best effort at prognostic assessment. The optimal match between the expressed values, goals, and preferences of the person with available clinician expertise is hopefully achieved. For the clinician, a person's choice to modify information disclosure and participation in shared decision-making represents a significant challenge of balancing key ethical principles of intervention with tolerance and compassion for these different preferences. Attention to communication strategies that elicit and appropriately reassess individual information and decision-making wishes, flexibility in information disclosure patterns with capable persons and their representatives, and recognition that a respect for autonomy includes the choice to opt out can approach this challenge while providing compassionate and ethical end-of-life care.
Background: The prognosis of an aggressive lymphoma can change dramatically following failure of first-line treatment. This sudden shift is challenging for the promotion of illness understanding and advance care planning (ACP). Yet, little is known about illness understanding and ACP in patients with aggressive lymphomas.
Objective: To examine illness understanding, rates of engagement in ACP, and reasons for lack of ACP engagement in patients with advanced B cell lymphomas.
Design: Cross-sectional observational study.
Setting/Subjects: Patients (n = 27) with aggressive B cell lymphomas that relapsed after first- or second-line treatment treated at a single urban academic medical center.
Measurements: Participants were administered structured surveys by trained staff to obtain self-report measures of illness understanding (i.e., aggressiveness, terminality, curability) and ACP (i.e., discussions of care preferences, completion of advance directives).
Results: The majority of patients reported discussing curability (92.6%), prognosis (77.8%), and treatment goals (88.9%) with their medical team. Yet, less than one-third of patients reported being terminally ill (29.6%) and having incurable disease (22.2%). Most patients had a health care proxy (81.5%) and had decided about do-not-resuscitate status (63%), but the majority had not completed a living will (65.4%) or discussed their care preferences with others (55.6%).
Conclusions: The accuracy of lymphoma patients' illness understanding following first-line treatment is difficult to determine due to the potential for cure following transplant. However, this study suggests that a large proportion of patients with advanced B cell lymphomas may underestimate the severity of their illness, despite discussing illness severity with their medical team. Providing patients with information on prognosis, and the ACP process may increase engagement in ACP.
The Epilepsy Deaths Register (EDR) differs from typical registries which concentrate primarily on clinical information. It is completed by bereaved relatives and focuses on the circumstances immediately before, and the support following, a death. It can be augmented by copies of death certificates from the families of the deceased, and all epilepsy associated deaths can be entered. The EDR is underpinned by the research and experience of the SUDEP Action team and the clinical advisors who helped design the methodology and the web-based platform. The EDR has been open since 2013 and currently has over 750 entries from over 20 different countries, the majority from the United Kingdom and the Republic of Ireland. The bereaved have shown that they place their trust in the register as a vehicle to be involved in research, even under the most difficult of circumstances. As the EDR matures, we hope to identify the common and rarer patterns of epilepsy-associated death; maintaining our dual ambitions to remain committed to listen, and to make every death count.
Cet article a pour objectif de présenter un livret d’information destiné aux patients d’une maladie lysosomale, à leurs familles et aux professionnels prenant soin d’eux. Ce livret tend à sensibiliser sur l’impact de la douleur chronique sur la qualité de vie et sur la démarche palliative. Les auteurs présentent le contexte de la construction de ce livret, son contenu et sa diffusion.
CONTEXT: Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs.
OBJECTIVES: Generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities.
METHODS: We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in 8 teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised 2 groups. Each cancer separately had 2 groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes.
RESULTS: A total of 45 people (13 clinicians, 24 patients, 8 caregivers) participated in the groups. The themes identified were: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD.
CONCLUSION: Patients, families and cancer clinicians have generally low knowledge of RMD but upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
La sclérose latérale amyotrophique (SLA) est une maladie neurodégénérative incurable. Elle est responsable d'une dépendance croissante au cours de son évolution et nécessite le recours à des techniques de suppléance vitales. Elle peut constituer un modèle relevant d'une prise en charge palliative. Celle-ci est pourtant tardive. Il existe de véritables enjeux légaux et éthiques à aborder précocement ce type de soins. L'élaboration de directives anticipées permet de respecter l'autonomie du patient. La maladie grave rend pourtant leur élaboration difficile. L'information du patient sur les possibilités thérapeutiques curatives mais aussi palliatives peut faciliter l'expression de ses souhaits. L'approche palliative précoce dans la SLA facilite le dialogue autour de la fin de vie et pourrait faciliter les choix du patient mais aussi du médecin.
RESEARCH QUESTION: How does the process of engagement and integration of sources of information outside patient-physician interaction affect how individuals with cancer interpret their treatment experience and prognosis?
BACKGROUND: Studies of patient-physician communication of prognosis in oncology highlight areas where misunderstanding occurs: understanding consequences of treatment, likelihood of treatment success, probability of cure, status/progression of illness, and prognosis. Theories proposing mechanisms that underlie this discrepancy cannot account for all instances of misunderstanding, including when complete and direct physician disclosure occurs. Prior research focused on patient-physician communication event(s) and immediate antecedents and consequences. However, less is known about what happens to information once it has been communicated and how a patient's process to interpret the meaning of their experience affects their understanding of it. Our study explores this question by examining patient communication with sources of information other than treating physicians.
METHODOLOGY: We conducted 10 semi-structured qualitative interviews with individuals diagnosed with 4 types of cancer at different stages. The interviews were analyzed using inductive qualitative analysis.
RESULTS: Participants in our sample consulted a variety of additional sources to give context and understanding to their communicated prognosis. These were important contributors to how they understood their prognosis and incorporated that understanding. They included family, friends/acquaintances, cancer survivors, support/survivor groups, secondary health-care staff, and relevant informational materials. Different motivations for seeking out these sources were also expressed. Participants expressed a link between their understanding of their prognosis and the variety of outside sources they enlisted for input and support.
The diagnosis of cancer for anyone is a time of fear and uncertainty. For young adults (YAs) diagnosed with acute leukemia (AL), there are the additional challenges related to lengthy aggressive in-hospital treatment, multiple concurrent symptoms, and decreased well-being. The purpose of this study was to explore the experiences of YAs with AL undergoing induction chemotherapy. This study used a nested qualitative longitudinal design with a convenience sample. Qualitative data were collected using semistructured interviews, and participants were invited to maintain journals. The semistructured interviews were audiotaped, transcribed, and loaded into Atlas.ti for analysis. Common themes and categories were verified and used to disseminate the findings. Seven YAs, mean age 32 (SD, 4) years, participated in this study. Three thematic classifications emerged: getting through, supported yet isolated, and information exchange preferences, which detail how these YAs processed and coped during treatment. The findings from this study provide important insights for nurses regarding coping mechanisms that YAs apply, which included relying on technology and social media platforms. Additionally, the YAs in this study discussed their need for information. The findings from this study may provide insights for clinicians currently caring for YAs with AL, while also directing future palliative care research endeavors.
This study investigated the association between patient characteristics and the occurrence of pressure injuries for patients at the end of life. A retrospective study was conducted using data collected from 2062 patients at the end of life between January 2007 and October 2015. In addition to demographic data and pressure injury risk assessment scale scores, injury history, disease type, and length of hospitalization were revealed as the major independent variables for predicting the occurrence of pressure injuries.
Although shared decision-making is a standard in medical care, unilateral decisions through process-based conflict resolution policies have been defended in certain cases. In patients who do not stand to receive proportional clinical benefits, the harms involved in interventions such as cardiopulmonary resuscitation seem to run contrary to the principle of non-maleficence, and provision of such interventions may cause clinicians significant moral distress. However, because the application of these policies involves taking choices out of the domain of shared decision-making, they face important ethical and legal problems, including a recent challenge to their constitutionality. In light of these concerns, we suggest a re-conceptualization of informed non-dissent as an alternative approach in cases where the application of process-based policies is being considered. This clinician-directed communication model still preserves what is valuable in such policies and salvages professional integrity, while minimising ethical and legal challenges.