Existing sociological research documents patient and physician reticence to discuss death in the context of a patient's end of life. This study offers a new approach to analyzing how death gets discussed in medical interaction. Using a corpus of 90 video-recorded oncology visits and conversation analytic (CA) methods, this analysis reveals that when existing parameters are expanded to look at mentions of death outside of the end-of-life context, physicians do discuss death with their patients. Specifically, the most frequent way physicians invoke death is in a persuasive context during treatment recommendation discussions. When patients demonstrate active or passive resistance to a recommendation, physicians invoke the possibility of the patient's death to push back against this resistance and lobby for treatment. Occasionally, physicians invoke death in instances where resistance is anticipated but never actualized. Similarly, death invocations function for treatment advocacy. Ultimately, this study concludes that physicians in these data invoke death to leverage their professional authority for particular treatment outcomes.
OPINION STATEMENT: Patients with advanced cancer and their families commonly seek information about prognosis to aid decision-making in medical (e.g. surrounding treatment), psychological (e.g. saying goodbye), and social (e.g. getting affairs in order) domains. Oncologists therefore have a responsibility to identify and address these requests by formulating and sensitively communicating information about prognosis. Current evidence suggests that clinician predictions are correlated with actual survival but tend to be overestimations. In an attempt to cultivate prognostic skills, it is recommended that clinicians practice formulating and recording subjective estimates of prognosis in advanced cancer patient's medical notes. When possible, a multi-professional prognostic estimate should be sought as these may be more accurate than individual predictions alone. Clinicians may consider auditing the accuracy of their predictions periodically and using feedback from this process to improve their prognostic skills.Clinicians may also consider using validated prognostic tools to complement their clinical judgements. However, there is currently only limited evidence about the comparative accuracy of different prognostic tools or the extent to which these measures are superior to clinical judgement. Oncologists and palliative care physicians should ensure that they receive adequate training in advanced communication skills, which builds upon their pre-existing skills, to sensitively deliver information on prognosis. In particular, clinicians should acknowledge their own prognostic uncertainty and should emphasise the supportive care that can continue to be provided after stopping cancer-directed therapies.
Background: Lack of awareness about the life-limiting nature of renal failure is a significant barrier to palliative care for older adults with end-stage renal disease.
Objective: To train nephrologists to use the best case/worst case (BC/WC) communication tool to improve shared decision making about dialysis initiation for older patients with limited life expectancy.
Design: This is a pre-/postinterventional pilot study.
Setting/Subjects: There were 16 nephrologists and 30 patients of age 70 years and older with estimated glomerular filtration rate (eGFR) <20 mL/min per 1.73 m2 in outpatient nephrology clinics, in Madison, WI.
Measurements: Performance of tool elements, content of communication about dialysis, shared decision making, acceptability of the intervention, decisions to pursue dialysis, and palliative care referrals were measured.
Results: Fifteen of 16 nephrologists achieved competence performing the BC/WC tool with standardized patients, executing at least 14 of 19 items. Nine nephrologists met with 30 patients who consented to audio record their clinic visit. Before training, clinic visits focused on laboratory results and preparation for dialysis. After training, nephrologists noted that declining kidney function was “bad news,” presented dialysis and “no dialysis” as treatment options, and elicited patient preferences. Observer-measured shared decision-making (OPTION 5) scores improved from a median of 20/100 (interquartile range [IQR] 15–35) before training to 58/100 (IQR 55–65). Patients whose nephrologist used the BC/WC tool were less likely to make a decision to initiate dialysis and were more likely to be referred to palliative care.
Conclusions: Nephrologists can learn to use the BC/WC tool with older patients to improve shared decision making about dialysis, which may increase access to palliative care.
Using the Ministry of Health, Labour and Welfare national data on perspectives toward medical care at the end of life, this study examined the current status of engagement in advance care planning (ACP) activities among physicians and nurses in Japan and associated factors. Only 28.7% of physicians and 27.6% of nurses answered that they were engaging their patients/clients in ACP. Multinomial regression analysis revealed that more frequent involvement in caring for dying patients was associated with ACP engagement for both physicians and nurses. Increased years of clinical practice experience and working in a hospital were associated with decreased likelihood of nurses' ACP engagement. Completion of training designed to promote patient self-determination at the end of life was associated with both physicians' and nurses' ACP engagement. It is recommended that health care professionals be encouraged to complete such training to promote patients' autonomy through ACP.
Background: Shared decision-making at end of life (eol) requires discussions about goals of care and prioritization of length of life compared with quality of life. The purpose of the present study was to describe patient and oncologist discordance with respect to goals of care and to explore possible predictors of discordance.
Methods: Patients with metastatic cancer and their oncologists completed an interview at study enrolment and every 3 months thereafter until the death of the patient or the end of the study period (15 months). All interviewees used a 100-point visual analog scale to represent their current goals of care, with quality of life (scored as 0) and survival (scored as 100) serving as anchors. Discordance was defined as an absolute difference between patient and oncologist goals of care of 40 points or more.
Results: The study enrolled 378 patients and 11 oncologists. At baseline, 24% discordance was observed, and for patients who survived, discordance was 24% at their last interview. For patients who died, discordance was 28% at the last interview before death, with discordance having been 70% at enrolment. Dissatisfaction with eol care was reported by 23% of the caregivers for patients with discordance at baseline and by 8% of the caregivers for patients who had no discordance (p = 0.049; f = 0.20).
Conclusions: The data indicate the presence of significant ongoing oncologist–patient discordance with respect to goals of care. Early use of a simple visual analog scale to assess goals of care can inform the oncologist about the patient’s goals and lead to delivery of care that is aligned with patient goals.
Objectif: La loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie demande aux médecins traitants d’informer leurs patients de leur possibilité de rédiger des directives anticipées et de désigner une personne de confiance. Le but de cette étude était de déterminer comment les médecins traitants envisagent la discussion sur la fin de vie avec leurs patients.
Méthode: Il s’agit d’un étude par focus group réalisée auprès de médecins généralistes traitants de Lorraine entre novembre et décembre 2016. Les entretiens ont été enregistrés, retranscrits mot à mot, et une analyse qualitative de contenu triangulée a été réalisée.
Résultats: Trente-deux médecins généralistes répartis en cinq groupes de discussion ont participé. Les médecins souhaitaient que la discussion sur la fin de vie soit initiée par leurs patients, dans les suites d’une médiatisation. La discussion devait permettre une démarche en trois temps : expliquer ses droits au patient, l’accompagner dans sa réflexion, éventuellement avec des confrères spécialistes ou des psychologues, puis l’aider à retranscrire ses volontés. À la demande du patient, la personne de confiance pourrait assister à cette discussion. Un temps dédié de consultation serait souhaitable, mais nécessiterait une éducation de la patientèle à ne venir que pour ce sujet. Certains envisageaient plusieurs consultations, selon les besoins du patient. La durée moyenne de la consultation serait adaptée au patient. Elle était estimée à 30 minutes. Une rémunération appropriée était demandée.
Conclusion: La discussion sur la fin de vie est un processus complexe nécessitant d’être reconnu, notamment via une consultation dédiée et une rémunération adaptée.
A culture of dying characterized by end-of-life care provided by strangers in institutional settings and diminished personal control of the dying process has been a catalyst for the increasing prevalence of legalized physician-assisted dying in the United States and medically-assisted dying in Canada. The moral logic of the right to die that supports patient refusals of life-extending medical treatments has been expanded by some scholarly arguments to provide ethical legitimation for hastening patient deaths either through physician-prescribed medications or direct physician administration of a lethal medication. The concept of medical-assisted dying increases the role and power of physicians in ending life and allows patients who are not terminally ill, or who have lost decision-making capacity, or who are suffering from a irremediable medical condition to have access to medical procedures to hasten death. This extended moral logic can be countered by ethical objections regarding the integrity of the patient-physician relationship and last resorts in ending life, professional concerns about medicalization and a diminished identity of medicine as a healing profession, and social responsibilities to provide equal access to basic health care and to hospice care.
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: Advance care planning (ACP) is not well implemented in hospital. Implementation theory stresses the importance of knowing what hospitalised palliative patients and their families experience as barriers or as facilitators in the uptake of ACP with their treating physician.
AIMS: This study aimed to gain an in-depth understanding of what hospitalised palliative patients and their families experienced as barriers or facilitators for having ACP conversations.
METHODS: We used a tape-assisted recall procedure to conduct 29 videotaped interviews with hospitalised patients and their families. We used content analysis based on grounded theory principles.
RESULTS: Four major fields of tension were discovered: not knowing what to expect from the treating physician; not being sure the treating physician can be a trusted partner; daring to speak about ACP; and staying loyal to one's own wishes.
CONCLUSIONS: Patients and families need physicians who are accessible and can be trusted ACP partners throughout the disease process.
Background: The signing of do-not-resuscitate (DNR) consent is mandatory in providing a palliative approach in the end-of-life care for the terminally ill patients and requires an effective communication between the physician and the patients or their family members. This study aimed to investigate the association between the communication skills of physicians who participated in the SHARE (supportive environment, how to deliver the bad news, additional information, reassurance, and emotional support) model course on the patient notification and the signing of do-not-resuscitate (DNR) consent by the terminally ill patients at emergency rooms.
Methods: Between May 1, 2017 and April 30, 2018, a total of 109 terminally ill patients were enrolled in this study, of which 70 had signed a DNR and 39 had not. Data regarding the patients' medical records, a questionnaire survey completed by family members, and patient observation forms were used for the assessment of physicians' communication skills during patient notification. The observation form was designed based on the SHARE model. A multivariate logistic regression model was applied to identify the independent significant factors of the patient and family member variables as well as the four main components of the observation form.
Results: The results revealed that knowing how to convey bad news and providing reassurance and emotional support were significantly correlated with a higher rate of signing DNR consent. Additionally, physician-initiated discussion with family members and a predicted limited life expectancy were negative independent significant factors for signing DNR consent.
Conclusion: This study revealed that good communication skills help to increase the signing of DNR consent. The learning of such skills from attendance of the SHARE model course is encouraged for the physicians in the palliative care of terminally ill patients in an emergency room.
BACKGROUND: Using advance care planning (ACP) to anticipate future decisions can increase compliance with people's end-of-life wishes, decrease inappropriate life-sustaining treatment and reduce stress, anxiety and depression. Despite this, only a minority of older people engage in ACP, partly because care professionals lack knowledge of approaches towards ACP with older people and their families.
OBJECTIVE: To explore older people's and their families' experiences with ACP in primary care.
METHODS: We conducted qualitative, semi-structured, face-to-face interviews with 22 older people (aged >70 years, v/m: 11/11), with experience in ACP, and eight of their family members (aged 40-79 years, f/m: 7/1). Transcripts were inductively analysed using a grounded theory approach.
RESULTS: We distinguished three main themes. (i) Openness and trust: Respondents were more open to ACP if they wanted to prevent specific future situations and less open if they lacked trust or had negative thoughts regarding general practitioners' (GPs') time for and interest in ACP. Engaging in ACP appeared to increase trust. (ii) Timing and topics: ACP was not initiated too early. Quality of ACP seemed to improve if respondents' views on their current life and future, a few specific future care scenarios and expectations and responsibilities regarding ACP were discussed. (iii) Roles of family: Quality of ACP appeared to improve if family was involved in ACP.
CONCLUSIONS: Quality and accessibility of ACP may improve if GPs and nurses involve family, explain GPs' interest in ACP and discuss future situations older people may want to prevent, and views on their current life and future.
BACKGROUND: End-of-life discussions often are not initiated until close to death, even in the presence of life-limiting illness or frailty. Previous research shows that doctors may not explicitly verbalize approaching end-of-life in the foreseeable future, despite shifting their focus to comfort care. This may limit patients' opportunity to receive information and plan for the future. General Practitioners (GPs) have a key role in caring for increasing numbers of patients approaching end-of-life.
OBJECTIVE: To explore GPs' thought processes when deciding whether to initiate end-of-life discussions.
METHODS: A qualitative approach was used. We purposively recruited 15 GPs or GP trainees from South-East Queensland, Australia, and each participated in a semi-structured interview. Transcripts were analyzed using inductive thematic analysis.
RESULTS: Australian GPs believe they have a responsibility to initiate end-of-life conversations, and identify several triggers to do so. Some also describe caution in raising this sensitive topic, related to patient, family, cultural and personal factors.
CONCLUSIONS: These findings enable the development of approaches to support GPs to initiate end-of-life discussions that are cognizant both of GPs' sense of responsibility for these discussions, and factors that may contribute to caution initiating them, such as anticipated patient response, cultural considerations, societal taboos, family dynamics and personal challenges to doctors.
The way death is (not) dealt with is one of the main determinants of the current crisis of cancer care. The tendency to avoid discussions about terminal prognoses and to create unrealistic expectations of fighting death is seriously harming patients, families and healthcare professionals, and the delivery of high-quality and equitable care. Drawing on different literature sources, we explore key dimensions of the taboo of death: medical, policy, cultural. We suggest that the oncologist, from a certain moment, could take on the role of amicus mortis, a classical figure in the past times, and thus accompanying patients towards the end of their life through palliation and linking them to psychosocial and ethical/existential resources. This presupposes the implementation of Supportive Care in Cancer and the ethical idea of relational autonomy based on understanding patients' needs considering their sociocultural contexts. It is also key to encourage public conversations beyond the area of medicine to re-integrate death into life.
BACKGROUND: This pilot study examined which of a patient's personal aspects should be taken into account in a hospital setting on admission to the palliative care unit (PCU) by asking patients the question "what should I know about you as a person to help me take the best care of you that I can?"
METHODS: This retrospective study used qualitative methodology to thematically analyze answers from 14 patients admitted to the PCU of the Medical University of Vienna during July and August 2018. The question "what should I know about you as a person to help me take the best care of you that I can?" was asked on the day of admission, notes were taken during the interview and the patient's answers were written out immediately afterwards. Data were analyzed using NVivo 12.
RESULTS: Results revealed four topics: characterization of one's personality, important activities, social bonding, and present and future concerns regarding the patient's illness. Data showed that this question enabled patients to describe themselves and what was important to them. This might result in an improved sense of self-esteem in patients and represents an opportunity for professionals to treat patients in a more individualized manner; however, patient reactions also revealed a reluctance to address certain personal issues within a medical context.
CONCLUSION: The study results provide insights into the benefits of paying more attention to personal life aspects of severely ill patients on admission to a PCU. Addressing individual aspects of patients' lives might improve the healthcare professional-patient relationship.
This paper recounts the author's conversations with Ryan Farnsworth, a 30-year-old ALS patient who consented to be interviewed for the purpose of improving communication between physicians and patients. Under the California End of Life Option (ELOA), the patient had been prescribed medication that would allow him to end his life at a time of his choosing. He describes coping with the challenges of the illness, how he will make the decision when to take the drugs and what he hopes will be his legacy.
CONTEXT: Patients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care.
OBJECTIVES: To understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians.
METHODS: This study utilized a mixed-methods design. 31 semi-structured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass Correlation Coefficients (ICCs) were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores.
RESULTS: Participants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed.
CONCLUSION: The ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns.
Background: Failure to initiate discussions about patients' values and goals in serious illness remains a common problem. Many clinicians are inadequately trained for these discussions.
Objective: Evaluate whether a novel train-the-trainer model results in high-quality training that improves clinicians' self-reported competencies in serious illness communication.
Design: Multimethod evaluation of an educational program.
Setting/Context: In 2016, three faculty at Ariadne Labs (AL) conducted three train-the-trainer courses to equip faculty trainers at each of the three institutions to teach serious illness communication to clinicians.
Measures: As collected by a post-training questionnaire, primary evaluation measure is clinicians' self-reported change in skills after the training compared with before. Secondary measures include a course evaluation and qualitative learnings.
Results: From 2016 to 2018, AL trained 22 trainers (19/22 were palliative care specialists) in three systems, who trained 297 clinicians (49% physicians; 35% advanced practice clinicians; 12% registered nurses, social workers, or chaplain; 4.0% Other) spanning subspecialties (48%); primary care (28%); palliative care (17%); and other (7.1%). Clinicians reported statistically significant improvement in all skills for two of the systems, with a third system demonstrating improvement in all skills with two reaching statistical significance (p < 0.0001). Participants rated the quality of the training highly (95% mostly/extremely effective) and shared a diverse array of takeaways that reflect positive shifts in knowledge, attitudes, and skills.
Conclusion: Serious illness communication training, delivered through a train-the-trainer model, was highly acceptable and resulted in significant self-reported improvements in competencies of clinicians. This may be a viable method for health systems seeking to train their clinical workforce.
Surgeons spend their careers taking care of complex surgical problems with high risk that have the potential to improve patient quality of life. Regrettably, patients do not always do well and the goal of improved quality of life through surgical palliation is not always achieved. Sometimes surgical complications arise, and patients fail to recover, or their disease progresses and the reality of cure changes, necessitating transparent communication. Ideally, surgeons address end-of-life issues as potential-ities over the continuum of care within the framework of the surgeon-patient relation-ship, rather than during a crisis when all treatment options have been exhausted. This article helps surgeons with the components of transitioning to comfort-focused care at the end of life, beginning with preoperative preparation and by encouraging ongoinggoals of care discussions thereafter.
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GPs should do more to help patients plan for their care and treatment because of a lack of awareness about advance decisions, says a report from the charity Compassion in Dying.
Advance decisions are documents that allow people to state in what circumstances they would want to refuse future treatment if they become seriously ill and cannot make or convey such decisions. Formerly known as “living wills,” advance decisions gained legal status in 2005.