The Advancing American Kidney Health (AAKH) Initiative aims to promote high-value patient-centered care by improving access to and quality of treatment options for kidney failure. The 3 explicit goals of the initiative are to reduce the incidence of kidney failure, increase the number of available kidneys for transplantation, and increase transplantation and home dialysis. To ensure a patient-centered movement toward home dialysis modalities, actionable principles of palliative care, including systematic communication and customized treatment plans, should be incorporated into this policy. In this perspective, we describe 2 opportunities to strengthen the patience-centeredness of the AAKH Initiative through palliative care: (1) serious illness conversations should be required for all dialysis initiations in the End-Stage Renal Disease Treatment Choices model, and (2) conservative kidney management should be counted as a home modality alongside peritoneal dialysis and home hemodialysis. A serious illness conversation can help clinicians discern whether a patient's goals and values are best respected by a home dialysis modality or whether a nondialytic strategy such as conservative kidney management should be considered. An intensive and careful patient- and family-centered selection process will be necessary to ensure that no patient is pressured to forego conventional dialysis.
Purpose: To investigate difficulties doctors experience during life-sustaining treatment (LST) discussion with seriously ill patients and their families after enactment of the LST Decisions Act in February 2018.
Materials and Methods: A cross-sectional survey was conducted in a tertiary hospital in the Republic of Korea in August 2019. 686 doctors who care for seriously ill patients were given a structured questionnaire, and difficulties during the discussion were examined.
Results: 132 doctors completed the questionnaire. 85% answered they treat cancer patients. Most (86.4%) experienced considerable difficulties during LST discussions (mean score, 7.4 ± 1.6/10). The two most common difficulties were communication with patients and family and determining when to discuss LST. Two-thirds of doctors found direct discussions with the patient difficult and said they would initiate LST discussions only with family. LST discussions were actually initiated later than considered appropriate. When medically assessing whether the patient is imminently dying, 56% of doctors experienced disagreements with other doctors, which could affect their decisions.
Conclusion: This study found that most doctors experienced serious difficulties regarding communication with patients and family and medical assessment of dying process during LST discussions. To alleviate these difficulties, further institutional support is needed to improve the LST discussion between doctors, patients, and family.
Palliative care and advance care planning (ACP) from the first diagnosis of glioblastoma are important. This questionnaire survey was conducted to understand the current status of palliative care for brain tumors in Japan. Representative characteristics of Japan in comparison with Western countries (P <0.01) are described below: (1) Gender ratio of male in physicians who treat brain tumors in Europe and the United States/Canada are about 70%, but 94% in Japan. (2) The specialty is predominantly neurosurgeon (93%) in Japan. The ratio of neurologists is predominantly 40% in Europe. In the United States/Canada, neurologist (27%) and neurosurgeon (29%) are main parts. (3) Years of medical experience over 15 in physicians is 73% in Japan. Proportions of those with over 15 years are 45% in Europe and 30% in the United States/Canada. (4) In practicing setting, the rate of academic medical centers is about 80% in Europe and the United States/Canada, and ~60% in Japan. Representative differences compared with past domestic data (2007) (p<0.01): (1) In glioblastoma, the rate of explaining about median survival time increases from 39% (2007) to 80% (2018). Explanation about medical conditions to the patient himself with his family increases from 20% (2007) to 39% (2018). (2) Place of death: The rate at hospital is decreasing from 96% (2007) to 79% (2018) and at home is increasing from 3% (2007) to 10% (2018) (3) The rate of ventilator in adult has decreased from 74% (2007) to 54% (2018), but nasal tube feeding has remained unchanged from 62% (2007) to 60% (2018). These results will be shared with physicians to make better care systems for patients with brain tumors.
IMPORTANCE AND OBJECTIVE: Conducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.
DESIGN: For this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians' moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).
SETTING AND PARTICIPANTS: Physicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians' moral considerations.
MAIN OUTCOMES: Physicians' moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.
RESULTS: Of 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician's interpretation or the context.
CONCLUSIONS: Physicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.
Medical aid in dying (MAID) is a practice in which a physician provides a competent adult with a terminal illness with a prescription for a lethal dose of a drug at the request of the patient, which the patient intends to use to end his or her life. MAID currently is legal in nine states and the District of Columbia. The most common concerns leading to requests for MAID include loss of autonomy, loss of ability to participate in activities that make life enjoyable, and loss of dignity. MAID remains controversial. Physicians can choose not to participate in MAID and many are prohibited from participating by their employers. Family physicians should have the knowledge and skills to respond to inquiries about MAID in a compassionate, patient-centered manner. Clinicians should be familiar with the legal status of MAID in the state in which they practice, understand eligibility requirements for participation, have access to resources to support patients and clinicians, and be able to apply various communication strategies to MAID discussions. A thoughtful exploration of what led the patient to inquire about MAID will allow the physician to better understand and respond to patient concerns regarding the final months of life.
Because of their longstanding relationships with patients, family physicians often are in the best position to identify signs of serious illness progression, provide support and guidance to patients and caregivers, and tailor care plans to individual needs and preferences at the end of life. Significant signs of illness progression include worsening of one or more conditions, decline in function, and increase in the number of emergency department visits or hospitalizations. Prognostication refers to estimation of the remaining life expectancy. Several tools are available to inform such estimates. Prognostication should include discussion of the expected illness progression to help patients and family members prepare, plan, and cope. Advance care planning, ideally started before or early in the course of illness, should include identification of patient surrogate decision-makers as well as a discussion of patient values, priorities, and care preferences. Planning should continue and evolve to inform care plans that match patient and family member priorities at each stage of illness. Family physicians should be familiar with resources available in their communities to support care plans, including palliative care subspecialists, home- and facility-based palliative care teams, and hospice physicians.
Purpose: Misconceptions regarding activity and toxicity of therapeutic interventions are common among cancer patients. There is little knowledge about the factors that contribute to a more realistic perception by patients.
Methods: This pilot study was designed as a prospective questionnaire survey and included 101 therapy-naïve patients treated at the Division of Oncology, Medical University of Vienna. After obtaining written informed consent, patients’ expectations about treatment aims, side effects and the satisfaction with their oncologic consultation were interrogated before the first treatment cycle by questionnaires.
Results: Of 101 patients, 53 (53%) were female and 67/101 (66%) were treated with curative attempt in an adjuvant or neo-adjuvant setting. The most common diagnoses were lung cancer (31%) and breast cancer (30%). Although 92% of patients were satisfied with the information given by their oncologist, palliative patients were more likely to declare that not everything was explained in an intelligible manner (p = 0.01). Patients with a first language other than German stated more often that their physician did not listen carefully enough (p = 0.02). Of 30 patients, 26 (87%) receiving chemotherapy with palliative intent believed that their disease was curable. Concerning adverse events, female patients anticipated more frequently hair loss (p = 0.003) and changes in taste (p = 0.001) compared to men. Patients under curative treatment were more likely to expect weight loss (p = 0.02) and lack of appetite (p = 0.01) compared to patients with palliative treatment intent.
Conclusion: In conclusion, cancer patients were satisfied with the patient-doctor communication. This prospective study aggregated patients’ concerns on side effects and the perception of therapeutic goals in therapy-naïve patients. Of note, the majority of patients treated in the palliative setting expected their treatment to cure the disease.
BACKGROUND: There is widespread agreement about the importance of communication skills training (CST) for healthcare professionals caring for cancer patients. Communication can be effectively learned and improved through specific CST. Existing CSTs have some limitations with regard to transferring the learning to the workplace. The aim of the study is developing, piloting, and preliminarily assessing a CST programme for hospital physicians caring for advanced cancer patients to improve communication competences.
METHODS: This is a Phase 0-I study that follows the Medical Research Council framework; this paper describes the following sections: a literature review on CST, the development of the Teach to Talk training programme (TtT), the development of a procedure for assessing the quality of the implementation process and assessing the feasibility of the implementation process, and the pilot programme. The study was performed at a 900-bed public hospital. The programme was implemented by the Specialized Palliative Care Service. The programme was proposed to 19 physicians from 2 departments.
RESULTS: The different components of the training course were identified, and a set of quality indicators was developed. The TtT programme was implemented; all the physicians attended the lesson, videos, and role-playing sessions. Only 25% of the physicians participated in the bedside training. It was more challenging to involve Haematology physicians in the programme.
CONCLUSIONS: The programme was completed as established for one of the two departments in which it was piloted. Thus, in spite of the good feedback from the trainees, a re-piloting of a different training program will be developed, considering in particular the bed side component. The program should be tailored on specific communication attitude and believes, probably different between different specialties.
Introduction : La plupart des Français souhaitent mourir à domicile mais peu d’entre eux y décèdent réellement. L’expression par le patient de son souhait sur le lieu de son décès en favorise le respect, mais les médecins connaissent peu ces souhaits. L’objectif de l’étude est de recueillir la façon dont les personnes en situation palliative à domicile envisagent d’aborder le lieu de décès avec leur médecin généraliste.
Méthode : Une étude qualitative a été réalisée par entretiens individuels semi-dirigés au domicile des personnes atteintes d’une pathologie incurable avec un pronostic vital entre 4 semaines et 2 ans.
Résultats : 15 entretiens ont été menés. La plupart des personnes interrogées souhaitent mourir à la maison, proche des leurs, mais le besoin d’être accompagné et de préserver leur entourage semble être plus important pour elles. Elles attendent que le médecin traitant aborde la fin de vie et le lieu de décès avec disponibilité, écoute et bienveillance, et qu’il y montre de l’intérêt. L’émergence de trois profils (paternaliste, autonomiste et intermédiaire) illustre la façon dont elles envisagent ces discussions avec leur médecin traitant.
Discussion : Les personnes en situation palliative à domicile attendent que le médecin traitant aborde la fin de vie avec une attitude adaptée au profil de chacun. Une consultation dédiée permettrait au médecin généraliste de créer des conditions favorables afin de donner au malade une opportunité d’aborder ce sujet sensible et de respecter ses souhaits.
Conclusion : Les malades souhaitent une implication du médecin généraliste dans les discussions anticipées.
One more chemo or one too many? The increasing use of expensive cancer treatments close to the patient's death is often explained by oncologists' failure to communicate to patients how close to dying they are, implying that patients are often both ill-prepared and over-treated when they die. This article aims at interrogating the politically charged task of prognosticating. Drawing on an ethnographic study of conversations between oncologists and patients with metastatic lung cancer in a Danish oncology clinic, I show that oncologists utilize, rather than avoid, prognostication in their negotiations with patients about treatment withdrawal. The study informs the emerging sociology of prognosis in three ways: First, prognostication is not only about foreseeing and foretelling, but also about shaping the patient's process of dying. Second, oncologists prognosticate differently depending on the level of certainty about the patient's trajectory. To unfold these differences, the article provides a terminology that distinguishes between four 'modes of prognostication', namely hinting, informing, calibrating and organizing. Third, prognosticating can unfold over time through multiple consultations, emphasizing the relevance of adopting methodologies enabling the study of prognosticating over time.
BACKGROUND: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences.
OBJECTIVE: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC).
DESIGN: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams.
SETTING/SUBJECTS: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California.
RESULTS: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis ("How much time do I have?"). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were "going downhill."
CONCLUSION: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.
Background: Advance care planning (ACP) can help to enhance the care of patients with limited life expectancy. Despite physicians’ key role in ACP, the ways in which physicians estimate and communicate prognosis can be improved.
Aim: To determine how physicians in different care settings self-assess their performance in estimating and communicating prognosis to patients in palliative care, and how they perceive their communication with other physicians about patients’ poor prognosis.
Design & setting: A survey study was performed among a random sample of GPs, hospital physicians (HPs), and nursing home physicians (NHPs) in the southwest of the Netherlands (n = 2212).
Method: A questionnaire was developed that had three versions for GPs, HPs, and NHPs. Each specialism filled in an appropriate version.
Results: A total of 547 physicians participated: 259 GPs, 205 HPs, and 83 NHPs. In the study, 61.1% of physicians indicated being able to adequately estimate whether a patient will die within 1 year, which was associated with use of the Surprise Question (odds ratio [OR] = 1.65, P = 0.042). In the case of a prognosis of <1 year, 75.0% of physicians indicated that they communicate with patients about preferences regarding treatment and care, which was associated with physicians being trained in palliative care (OR = 2.02, P=0.007). In cases where patients with poor prognosis are discharged after hospital admission, 83.4% of HPs indicated that they inform GPs about these patients’ preferences compared with 29.0% of GPs, and 21.7% of NHPs, who indicated that they are usually adequately informed about the preferences.
Conclusion: The majority of physicians indicated that they believe they can adequately estimate patients’ limited life expectancy and that they discuss patients’ preferences for care. However, more physicians should be trained in communicating about patients’ poor prognosis and care preferences.
Physicians have a responsibility to discuss do-not-resuscitate (DNR) decisions and end-of-life (EOL) care with patients and family members. The aim of this study was to explore the DNR and EOL care discussion experience among physicians in Taiwan. A qualitative study was conducted with 16 physicians recruited from the departments of hospice care, surgery, internal medicine, emergency, and the intensive care unit. The interview guidelines included their DNR experience and process and EOL care discussions, as well as their concerns, difficulties, or worries in discussions. Thematic analysis was used to analyze data. Four themes were identified. First, family members had multiple roles in the decision process. Second, the characteristics of the units, including time urgency and relationships with patients and family members, influenced physicians' work. Third, the process included preparation, exploration, information delivery, barrier solution, and execution. Fourth, physicians shared reflections on their ability and the conflicts between law, medical professionals, and the best interests of patients. Physicians must consider not only patients' but also family members' opinions and surmount several barriers in decision-making. They also experienced negative and positive impacts from these discussions.
Background: In 2017, the American College of Surgeons' Trauma Quality Improvement Program adopted a Palliative Care Best Practices Guidelines that calls for early palliative care for hospitalized injured patients.
Objective: To develop an educational intervention to address the palliative needs of injured patients.
Design: Palliative faculty presented a three-part monthly lecture series focused on core primary palliative skills, including the components of palliative care; conducting family conferences; communication skills for complex medical decision making; pain management; and, end-of-life planning. Additionally a palliative provider joined trauma team rounds every other week to highlight opportunities for enhanced palliative assessments, identify appropriate consults, and provide just-in-time teaching.
Setting: Urban, level-1 trauma center.
Measurements: Surgical residents completed a survey at the beginning and end of the academic year, during which the intervention took place. All survey questions were answered with a 5-point Likert scale. Rate of palliative care consultation was also tracked.
Results: There were statistically significant perceived improvements in goals-of-care discussions (initial discussion—4.30 vs. 3.52, p = 0.4; follow-up discussion—3.89 vs. 3.05, p = 0.021) and documentation (3.89 vs. 2.9, p = 0.032), incorporation of patient preferences into decision making (4.20 vs. 3.43, p = 0.04), discussion of palliative needs during rounds (4.30 vs. 2.81; p < 0.001) and care transitions (3.90 vs. 3.05, p = 0.008), respect for decisions to forgo life-sustaining treatments (4.40 vs. 3.52, p = 0.004), and identification of advance directives (4.11 vs. 3.05, p = 0.002) and surrogate decision maker (4.44 vs. 3.60, p = 0.015). The overall rate of palliative specialist consultation also increased (8.4% vs. 16.1%, p < 0.001).
Conclusion: Embedding primary palliative education into usual didactic and rounding time for an inpatient trauma team is an effective way to help residents develop palliative skills and foster culture change. Educational partnerships such as this may serve as an example to other trauma programs.
BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties.
METHODS: This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018.
RESULTS: Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%).
CONCLUSIONS: The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.
OBJECTIVE: The aims of the study were to examine patients' experiences of end-of-life (EOL) discussions and to shed light on patients' perceptions of the transition from curative to palliative care.
METHODS: This study was based on a qualitative methodology; we conducted semi-structured interviews with advanced cancer patients admitted to the palliative care unit (PCU) of the Medical University of Vienna. Interviews were recorded digitally and transcribed verbatim. Data were analyzed based on thematic analysis, using the MAXQDA software.
RESULTS: Twelve interviews were conducted with patients living with terminal cancer who were no longer under curative treatment. The findings revealed three themes: (1) that the medical EOL conversation contributed to the transition process from curative to palliative care, (2) that patients' information preferences were ambivalent and modulated by defense mechanisms, and (3) that the realization and integration of medical EOL conversations into the individual's personal frame of reference is a process that needs effort and information from different sources coming together.
CONCLUSIONS: The results of the present study offer insight into how patients experienced their transition from curative to palliative care and into how EOL discussions are only one element within the disease trajectory. Many patients struggle with their situations. Therefore, more emphasis should be put on repeated offers to have EOL conversations and on early integration of aspects of palliative care into the overall treatment.
OBJECTIVE: The implementation of medical aid-in-dying (MAID) poses new challenges for clinical communication and counseling. Among these, health care providers must consider whether to initiate a discussion of MAID with eligible patients who do not directly ask about it. Norms and policies concerning this issue vary tremendously across jurisdictions where MAID is legally authorized, reflecting divergent assumptions about patients' rights to information about end-of-life options and the purpose and potential harms of clinical disclosure.
METHOD: This discussion forum essay draws on informed consent doctrine to analyze two policies concerning clinical communication about MAID: the legal prohibition against provider-initiated discussions of MAID in Victoria, Australia, and the Canadian Association of MAID Assessors and Providers (CAMAP) position that providers have an ethical and professional responsibility to inform eligible patients about MAID.
CONCLUSIONS: Informed consent requires that clinicians strike a balance between minimizing potential harms to patients caused by initiating discussions of MAID and the imperative to inform and counsel patients about all of their legally available medical options.
PRACTICE IMPLICATIONS: Clinicians should be aware of both the importance of communication as a tool to inform patients and the potential for clinical language to cause harm to or to unduly influence patients.
BACKGROUND: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care.
AIM: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians.
DESIGN: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout.
SETTING/PARTICIPANTS: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited.
RESULTS: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians' lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences.
CONCLUSION: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient's condition may be a suitable time.
PURPOSE: Guidelines recommend earlier advance care planning discussions focused on goals and values (serious illness communication) among oncology patients. We conducted a prospective, cross-sectional quality improvement evaluation of patients who had a serious illness conversation (SIC) with an oncology clinician using the Serious Illness Conversation Guide to understand patient perceptions of conversations using a structured guide.
METHODS: We contacted 66 oncology patients with an SIC documented in the electronic health record. Thirty-two patients (48%) responded to survey and/or structured interview questions by telephone. We used summary statistics and thematic analysis to analyze results.
RESULTS: Twenty-eight respondents (90%) reported that the SIC was worthwhile. Seventeen respondents (55%) reported that the conversation increased their understanding of their future health, and 18 (58%) reported that the conversation increased their sense of closeness with their clinician. Although the majority of respondents (28 [90%]) reported that the conversation increased (13 [42%]) or had no effect (15 [48%]) on their hopefulness, a small minority (3 [10%]) reported a decrease in hopefulness. Qualitative analysis revealed 6 themes: clinician-patient relationship, impact on well-being, memorable characteristics of the conversation, improved prognostic understanding, practical planning, and family communication.
CONCLUSION: SICs are generally acceptable to oncology patients (nonharmful to the vast majority, positive for many). Our qualitative analysis suggests a positive impact on prognostic understanding and end-of-life planning, but opportunities for improvement in the delivery of prognosis and preparing patients for SICs. Our data also identify a small cohort who responded negatively, highlighting an important area for future study.