The Voluntary Assisted Dying Act 2017 (Vic) (VAD Act) will become operational on 19 June 2019. A designated 18-month implementation period has seen an Implementation Taskforce appointed, and work is underway on projects including developing clinical guidance, models of care, medication protocols and training for doctors participating in voluntary assisted dying (VAD). While some have written on the scope of, and reaction to, the VAD legislation, there has been very little commentary on its implementation. Yet, important choices must be made about translating these laws into clinical practice. These choices have major implications for doctors and other health professionals (including those who choose not to facilitate VAD), patients, hospitals and other health providers. This article considers some key challenges in implementing Victoria's VAD legislation.
As the median age of practicing physicians increases, ethical dilemmas due to age-related cognitive decline among clinicians will become ever more pressing. Compelling data show that despite acknowledgement of their duty to protect the public, physicians often fail to report themselves, their colleagues, or their physician-patients when cognitive decline appears to impact medical practice adversely. As such, efforts to educate physicians about ethical obligations and various tactful methodologies to report themselves or others seem ineffective. Illustrated by a case report of age-related cognitive decline in a practicing physician, practical recommendations are made both to develop and validate cognitive screening in middle-aged physicians, presumably before the onset of age-related cognitive decline.
BACKGROUND & AIMS: Despite evidence for the benefits of palliative care (PC) referrals and early advance care planning (ACP) discussions for patients with chronic diseases, patients with end-stage liver disease (ESLD) often do not receive such care. We sought to examine physicians' perceptions of the barriers to PC and timely ACP discussions for patients with ESLD.
METHODS: We conducted a cross-sectional survey of hepatologists and gastroenterologists who provide care to adult patients with ESLD, recruited from the American Association for the Study of Liver Diseases 2018 membership registry. Using a questionnaire adapted from prior studies, we assessed physicians' perceptions of barriers to PC use and timely ACP discussions; 396 of 1236 eligible physicians (32%) completed the questionnaire.
RESULTS: The most commonly cited barriers to PC use were cultural factors that affect perception of PC (by 95% of respondents), unrealistic expectations from patients about their prognosis (by 93% of respondents), and competing demands for clinicians' time (by 91% of respondents). Most respondents (81%) thought that ACP discussions with patients who have ESLD typically occur too late in the course of illness. The most commonly cited barriers to timely ACP discussions were insufficient communication between clinicians and families about goals of care (by 84% of respondents) and insufficient cultural competency training about end-of-life care (81%).
CONCLUSION: There are substantial barriers to use of PC and timely discussions about ACP-most hepatologists and gastroenterologists believe that ACP occurs too late for patients with ESLD. Strategies are needed to overcome barriers and increase delivery of high-quality palliative and end-of-life care to patients with ESLD.
La décision médicale partagée est un processus complexe, notamment concernant l’arrêt des traitements spécifiques en oncologie. D’une part, le patient, plus vulnérable du fait d’une maladie avancée, et ses proches, redoutent cette interruption. D’autre part, l’oncologue dispose de plus en plus de possibilités thérapeutiques grâce aux avancées médicales réalisées ces dernières années. Une étude prospective observationnelle a été menée en oncologie. Elle s’est intéressée aux motifs faisant émerger le questionnement, au degré de concordance entre les différents interlocuteurs (équipe de soins palliatifs, oncologue, patients et proches) et à la décision finalement prise.
La décision médicale d’un prélèvement d’organes est un acte que la loi tend à réduire et à soumettre à une simple logique juridique. La complexité et l’extrême sensibilité des principes, valeurs et sentiments humains en jeu ne s’accommodent pas de cette simplification. Le processus décisionnel fait intervenir plusieurs parties et respecte la temporalité des familles.
Le processus décisionnel en établissement d’hébergement pour personnes âgées dépendantes est complexe. Au regard de la prévalence des troubles cognitifs et de l’importance du rôle des aidants, il suppose de passer d’un choix personnel à une décision partagée. Le cadre juridique, bien que favorable, reste sous-exploité et pourrait être amélioré.
Le diagnostic anténatal aboutit parfois à une décision d’interruption médicale de grossesse (IMG). Il s’agit d’une décision partagée par le corps médical et le couple concernant leur futur enfant, juridiquement reconnu comme fœtus tout au long de la grossesse. Les IMG pour indications fœtales ne peuvent être décidées qu’à l’issue d’un parcours de soins où patientes, couples et soignants se doivent d’aboutir à un projet d’avenir “digne et acceptable” pour l’enfant attendu.
Le consentement est une notion présente au cœur de notre pratique soignante. Comment faire lorsque la personne soignée est atteinte de troubles cognitifs altérant son jugement et son discernement ? Dans ce contexte, le consentement à l’entrée en institution convoque un questionnement éthique. Il est nécessaire d’interroger les pratiques et d’inscrire la personne âgée vulnérable dans une décision qui la concerne en premier lieu.
OBJECTIVES: Early palliative care leads to meaningful improvements in physical and psychosocial symptoms, as well as quality of life, in patients with advanced cancer. Patients with haematological malignancies, despite a high level of distress, continue to have less access to palliative care services. The aim of this study was to identify haematologists' perceptions of palliative care, as well as barriers to patient referral.
METHODS: We used a qualitative grounded theory methodology. Twenty-four medical haematologists involved in clinical practice from two French centres in Lyon-the Lyon Sud University Hospital and the Léon Bérard Cancer Center-were included. The interview guide questions aimed to establish the clinical situations which triggered referral to palliative care and how participants perceived palliative care.
RESULTS: Data saturation was reached after 14 interviews. The data analysis highlighted four themes. The aim of palliative care was clearly identified as alleviating severe suffering. Palliative care was identified as a separate specialty, and respondents expressed the need for collaboration. Early intervention was perceived as beneficial to avoid certain situations such as hospitalisation or emergency department visits at the end of life. The main barrier to palliative care referral remained the negative connotations associated with the term 'palliative', which was overwhelmingly associated with the end of life.
SIGNIFICANCE OF RESULTS: Our results suggest that the principal barrier to palliative care referral is the term 'palliative care'; haematologists would prefer 'supportive care' instead.
Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.
OBJECTIVE: This observational study explores the association between palliative care (PC) involvement and high-cost imaging utilisation for patients with cancer patients during the last 3 months of life.
METHODS: Adult patients with cancer who died between 1 January 2012 and 31 May 2015 were identified. Referral to PC, intensity of PC service use, and non-emergent oncological imaging utilisation were determined. Associations between PC utilisation and proportion of patients imaged and mean number of studies per patient (mean imaging intensity (MII)) were assessed for the last 3 months and the last month of life. Similar analyses were performed for randomly matched case-control pairs (n = 197). Finally, the association between intensity of PC involvement and imaging utilisation was assessed.
RESULTS: 3784 patients were included, with 3523 (93%) never referred to PC and 261 (7%) seen by PC, largely before the last month of life (61%). Similar proportions of patients with and without PC referral were imaged during the last 3 months, while a greater proportion of patients with PC referral were imaged in the last month of life. PC involvement was not associated with significantly different MII during either time frame. In the matched-pairs analysis, a greater proportion of patients previously referred to PC received imaging in the period between the first PC encounter and death, and in the last month of life. MII remained similar between PC and non-PC groups. Finally, intensity of PC services was similar for imaged and non-imaged patients in the final 3 months and 1 month of life. During these time periods, increased PC intensity was not associated with decreased MII.
CONCLUSIONS: PC involvement in end-of-life oncological care was not associated with decreased use of non-emergent, high-cost imaging. The role of advanced imaging in the PC setting requires further investigation.
BACKGROUND: Early palliative care (PC) improves quality of life and prolongs survival for patients with metastatic non-small cell lung cancer (NSCLC). Despite these benefits, patient- and provider-specific barriers lead to underutilization of PC. To investigate these barriers, this 2 part study surveyed United States oncologists and patients with NSCLC.
PATIENTS AND METHODS: Oncologists in the International Association for the Study of Lung Cancer membership directory were surveyed on referral practice and attitudes regarding the role of PC for patients with NSCLC. Patients with advanced NSCLC at the Vanderbilt Ingram Cancer Center were surveyed separately regarding their understanding of PC and factors influencing them to seek referral.
RESULTS: Of 279 oncologists, 93 responded. Eighty-three percent believe definitive evidence exists supporting early PC; however, in practice, oncologists only refer an average of 19% of patients at diagnosis. Reasons for not referring included lack of symptoms (56%), belief that oncologists can manage PC independently (46%), not wanting to burden patients with appointments (41%), concern that referral may not be well received (38%), and long wait times (20%). Of 100 patients with NSCLC, 64% were unfamiliar with PC. Six percent had seen a PC provider. Ninety-eight percent of patients would accept referral if recommended by their oncologist. Patients desired referral for uncontrolled pain (95%), weak support system (86%), other cancer-related symptoms (85%), goals of care discussion (76%), and depression/anxiety (76%).
CONCLUSION: Although most oncologists acknowledge benefits of early PC for patients with metastatic NSCLC, a minority of patients are referred. Few patients with NSCLC are familiar with PC, but most are interested in referral.
Le concept de décision médicale partagée est particulièrement adapté aux soins palliatifs. Dans les équipes, le rôle des psychologues s’articule au quotidien avec celui des médecins et des soignants pour prendre en considération le sujet dans sa globalité et sa singularité. L’accompagnement d’une patiente âgée de 29 ans illustre les enjeux de cette prise de décision.
La loi Leonetti du 22 avril 2005 a posé un cadre législatif définissant l’obstination déraisonnable, que l’on nommait précédemment l’acharnement thérapeutique. La décision de ce qui est raisonnable ou non dans la mise en place ou la poursuite de traitements soit curatifs soit de maintien artificiel de la vie renvoie à une question éthique sur la fin de vie. C’est en interrogeant cette éthique de fin de vie que l’aide-soignante peut parvenir à vivre au mieux toute décision médicale en lien avec une problématique d’obstination déraisonnable.
Brain death has specific implications for organ donation with the potential for saving several lives. Awareness on maintenance of the brain dead has increased over the last decade with the progress in the field of transplant. The diagnosis of brain death is clinical and can be confirmed by apnea testing. Ancillary tests can be considered when the apnea test cannot be completed or is inconclusive. Reflexes of spinal origin may be present and should not be confused against the diagnosis of brain death. Adequate care for the donor targeting hemodynamic indices and lung protective ventilator strategies can improve graft quality for donation. Hormone supplementation using thyroxine, antidiuretic hormone, corticosteroid and insulin has shown to improve outcomes following transplant. India still ranks low compared to the rest of the world in deceased donation. The formation of organ sharing networks supported by state governments has shown a substantial increase in the numbers of deceased donors primarily by creating awareness and ensuring protocols in caring for the donor. This review describes the steps in the establishment of brain death and the management of the organ donor. Material for the review was collected through a Medline search, and the search terms included were brain death and organ donation.
CASE HISTORY: DG is a 61-year-old college-educated, divorced, male navy veteran with no children who is currently unemployed and lives in a residential group home for management of his chronic mental illness. DG had been psychiatrically stable for years and enjoyed some degree of independence. With regard to his functioning, DG would navigate the bus and train system independently, did his own shopping, and attended theater performances. He required assistance remembering to take his medications and with attending appointments, arising in part from negative symptoms of schizophrenia, including apathy and amotivation. Although he had not lived alone or worked in recent years, he had expressed interest in moving into his own apartment and teaching English as a second language. Of note, he served as a linguist in the navy many years before. He also enjoyed reading Russian literature, speaking Russian (in which he is fluent), and engaging in deep conversations on literature with visitors and staff.
BACKGROUND: Palliative care programs in the United States are becoming more integrated with oncology outpatient practices.
OBJECTIVES: This article offers a condensed review of available literature on the usefulness of palliative care in the oncology clinic setting and a case study to illustrate these ideas.
METHODS: Literature was reviewed related to the successes and failures of providing an embedded palliative care team in an oncology clinic and its role and effectiveness as part of a collaborative interprofessional team for patients with cancer.
FINDINGS: The incorporation of palliative care into outpatient oncology clinics presented a reduction in symptom burden, financial burden, and emergency department visits for symptom management. Palliative care also facilitates increased communication between patients and providers to ensure that care meets patients' wishes.
The Royal College of Physicians is to remove its opposition to assisted dying and adopt a neutral stance on the issue after announcing the results of a poll of its members.
Of the 6885 doctors who responded to the poll (20% of the RCP’s members and fellows), 43% thought that the college should be opposed to changing the law on assisted dying. This was similar to the 44% when RCP members were last polled in 2014.
But the proportion of respondents wanting the RCP to support a change in the law increased to 32% in 2019, from 25% in 2014. A quarter of respondents (25%) in the latest poll thought that the RCP should be neutral, down from 31% in 2014.
BACKGROUND: Nurses in inpatient palliative care are frequently exposed to death and dying in addition to common stressors found in other nursing practice. Resilience may mitigate against stress but remains ill-defined and under-researched in the specialist palliative care setting.
OBJECTIVE: The aim of this systematic review was to understand resilience from the perspectives of inpatient palliative care nurses.
DESIGN: A thematic synthesis of qualitative studies was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.
DATA SOURCES: Academic Search Ultimate, Cumulative Index to Nursing and Allied Health Literature, Medline Complete, PsycINFO and Scopus.
REVIEW METHODS: The review stages were searching for relevant literature, selecting relevant papers, data extraction, critical appraisal and thematic synthesis.
RESULTS: Eight studies revealed 10 subthemes, 3 descriptive themes and 1 analytical theme: resilience occurs when nurses incorporate stressful aspects of their personal or professional lives into a coherent narrative that enhances their ability to cope with the demands of their role.
CONCLUSION: Palliative care nursing is more stressful if patients or situations remind nurses of personal experiences. Nurses cope better with adequate support; however, coping does not necessarily imply increased resilience. Resilience occurs when nurses cognitively process their experiences, articulate their thoughts and feelings into a coherent narrative, and construct a sense of meaning or purpose. Future research could explore how nurses understand resilience and how it could be enhanced in the palliative care inpatient setting. With resilience, nurses may remain in the profession longer and improve the quality of care when they do.