Libre et éclairé : voilà comment devrait être un consentement viable, valable et authentique, tant dans le monde de la santé que dans celui des affaires. Mieux même, et plus conforme à l’actualité, est qu’il soit « libre et informé » : cela met en avant la personne concernée plutôt que le message et sa source lumineuse forcément en surplomb. Telles sont en tout cas les conditions qui lui donnent son label aux plans de la loi et de la déontologie, si ce n’est à celui de l’éthique. Pour autant, liberté et information se situent-elles exactement au même niveau fondateur ? Jouent-elles des rôles symétriques dans le processus qui conduit au oui ?
Le système de santé privilégie aujourd’hui la prise en charge de malades au domicile. Au-delà des interrogations d’ordre financier et structurel que cela implique, cela ne va pas sans questionner la notion de vulnérabilité du malade. Mais également la vulnérabilité de chacune des personnes agissant autour du malade au domicile. Le domicile n’est pas un terrain neutre. Il est le lieu de l’intime. Celui qui permet au malade, lorsque sa maladie évolue, de « trouver refuge ». La prise en charge du malade au domicile implique l’intervention d’une équipe médicale. Cette équipe accompagne le malade et ses proches avec des compétences de soignants. Ces caractéristiques médicales rejoignent celles des bénévoles. La complémentarité entre les diverses interventions est un gage de réussite dans la prise en charge du malade et des proches. L’échange d’informations entre tous les protagonistes est un rouage essentiel permettant de minimiser d’éventuels conflits et de rester au plus près du désir du malade. Ce carrefour d’informations pourra également éviter que le malade ne ressente comme une intrusion la venue à son domicile des divers intervenants.
Il est important de noter que l’accompagnement aujourd’hui n’est pas l’apanage des phases terminales. La prise en charge d’un malade se fait dès l’annonce d’une maladie grave, nécessitant que tous les paramètres au-delà du médical soient pris en compte dès la première hospitalisation. Les différentes phases, soins curatifs, soins palliatifs, phase ultime, sont autant d’étapes à reconnaître et à étudier, pour une prise en charge globale de la maladie…
PURPOSE: Despite clear benefits of early integration of palliative care (PC) and oncology, concerns remain about negative perceptions of PC. Our aim was to explore current knowledge and perceptions of PC in cancer patients.
METHODS: We conducted a prospective, cross-sectional survey. A 16-item questionnaire was distributed to all cancer patients (N=103) upon admission to the oncology ward of an Australian tertiary academic hospital. Chi-squared test was used to examine for significant factors related to patients' perceptions.
RESULTS: Ninety-six patients (93%) completed the questionnaire; 76% had metastatic cancer. We explored the following domains: Experience and knowledge: 76% had heard of PC; 21% had received PC. Self-rated PC knowledge was varied. Forty-five percent believed that PC was only associated with EOLC; those more likely to disagree had received PC services (p=0.039). Integration of PC and oncology: Majority believed that they could receive oncology care (86%) and anti-cancer treatment (81%) whilst receiving PC. Those who had heard of PC and with better self-rated knowledge were more likely to believe that they could receive concurrent anti-cancer treatment (p=0.005, p=0.045, respectively). Feelings: 77% felt comforted with PC involvement; this was significantly associated with older age (p=0.047) and understanding that oncology (p<0.005) and anti-cancer treatment (p=0.013) could continue. However, some felt frightened (40%) and hopeless (29%) about referral to PC. Fifty percent felt more comfortable with referral to 'supportive care' services (versus PC).
CONCLUSIONS: Our survey demonstrates reasonable understanding and relatively positive feelings about PC, associated with experience and knowledge. Nonetheless, there is ongoing need for better patient and public education about PC.
Recently, the Portuguese Parliament discussed four proposals aimed at allowing some forms of medically assisted death. However, all of them were rejected by the majority. Therefore, doctors who in some way accelerate a patient's death risk being convicted of the crime of homicide. Portuguese law provides some legal mechanisms that can exempt a doctor from criminal liability, such as causes excluding the conduct's wrongfulness, and causes excluding the doctor's culpability. Other elements to take into consideration are a proper interpretation of homicide crimes, thereby excluding conducts without the intent to kill; the relevance of patient consent; and the rejection of medical futility. This article explains how a doctor may not be held criminally accountable for medically assisted death, even in restrictive jurisdictions such as the Portuguese one.
INTRODUCTION: An Advance Healthcare Directive (AHD) is a written document that contains a patient-in-care's will and preferences concerning the treatment options available to them, should they lack decision-making capacity. AHDs are completed within a broader framework known as Advance Care Planning. No study has explored the viewpoint of Spanish mental healthcare professionals towards AHDs.
AIM: To explore the viewpoint of mental health professionals towards the implementation of AHDs in mental health.
METHOD: A qualitative study was conducted using semi-structured interviews that were thematically analysed.
FINDINGS: Three main themes were identified: care planning culture; barriers for the practical management of AHDs; and reasons to not honour patient-in-care AHDs.
DISCUSSION: Professionals find it pragmatically difficult to stop applying traditional paternalistic practices. To implement AHDs, improving the knowledge and awareness of AHDs and management of non-technical skills through training is required. Such training should include users and families and allow for compliance with United Nations requirements.
IMPLICATIONS FOR PRACTICE: AHDs offer important information regarding user preferences, although they pose challenges for practices. Acquiring an up-to-date perspective on the attitudes of professionals towards AHDs allows organizations to attend to particular aspects that require reinforcement. Wider awareness, staff training, and new ways of relating to users are necessary to implement AHDs in Spanish context.
RELEVANCE STATEMENT: A better understanding of the attitudes of Spanish mental health professionals towards AHDs was achieved. Despite the implementation of AHDs being an important and potentially beneficial initiative, mental health professionals find many pragmatic issues that need addressing before AHDs become a reality in their clinical practice. Wider awareness, staff training, personalized assistance and new ways of relating to users are required to implement AHDs in everyday practice.
Objective: To improve patient participation in advance care planning in nursing homes where most patients have some degree of cognitive impairment.
Methods: This was a pair-matched cluster randomized clinical trial with eight wards in eight Norwegian nursing homes. We randomized one ward from each of the matched pairs to the intervention group. We included all patients above 70. The primary outcome was prevalence of documented patient participation in end-of-life treatment conversations. The intervention included implementation support using a whole-ward approach where regular staff perform advance care planning and invite all patients and next of kin to participate.
Results: In intervention group wards the patients participated more often in end-of-life treatment conversations (p < 0.001). Moreover, the patient's preferences, hopes AND worries (p = 0,006) were more often documented, and concordance between provided TREATMENT and patient preferences (p = 0,037) and next of kin participation in advance care planning with the patient (p = 0,056) increased.
Conclusion: Improved patient participation - also when cognitively impaired - is achievable through advance care planning in nursing homes using a whole-ward approach.
Practice implications: Patients with cognitive impairment should be included in advance care planning supported by next of kin. A whole-ward approach may be used to implement advance care planning.
Hope is an important factor in coping and adjusting to life-threatening disease. In this study, we examined the meaning of hope among people with amyotrophic lateral sclerosis (ALS). Semi-structured interviews with 12 people revealed that hope had two contradictory meanings. For some, hope was considered an obstacle to achieving control and to actively cope with the disease. Alternatively, other people with ALS regarded hope as a crucial resource, which empowered their coping and control. These findings are discussed in the context of research and theoretical literature about hope and coping processes.
Objectif : Dans la législation suisse, les directives anticipées sont conçues comme instrument permettant au futur patient de faire respecter sa volonté par rapport à de potentiels traitements médicaux. Comment et avec quels effets ces directives anticipées sont-elles perçues et utilisées dans la pratique par les acteurs qui entourent le patient dans les situations de fin de vie en établissement médicosocial et à domicile ? Des entretiens collectifs ont été menés dans trois régions linguistiques de la Suisse avec des médecins (12), des infirmiers (11) et des proches (six et trois entretiens).
Résultats : Une analyse de contenu montre que les directives anticipées sont souvent utilisées comme levier permettant l’ouverture d’un dialogue sur la fin de vie dans une perspective d’autodétermination du patient. Leur mise en œuvre par contre est difficile dans les situations à domicile car les proches portent la responsabilité de leur application alors qu’elle l’est moins en établissement médicosocial où la présence des soignants rend la prise de décision plus diffuse. Ainsi, le poids de l’autodétermination du patient que le législateur concevait être en priorité vis-à-vis du pouvoir médical est principalement porté par les proches et les soignants.
Conclusion : Des améliorations dans l’information et la communication entre les acteurs, des pistes d’action proposées par nos interviewés, ne suffisent pas. Une réflexion plus globale sur la manière dont ces directives s’implémentent dans les situations de fin de vie tendent à montrer que les résultats escomptés par le législateur, soit une amélioration de l’autodétermination du patient, ne sont pas atteints.
The consideration of laypeople’s views of conditions under which euthanasia is justifiable is important for policy decisions. In an online survey of US respondents, we examined how patient’s symptoms influence justifiability of euthanasia. Euthanasia was judged more justifiable for conditions associated with physical suffering and negative impact on other people. The weight given to physical suffering and negative impact on others in evaluation of justifiability of euthanasia also differed based on personal characteristics. The results suggest that public discourse about medical assistance in dying should take into account differences in its perceived justifiability for patients with different conditions.
BACKGROUND: Many decisions are made by patients in their last months of life, creating complex decision-making needs for these individuals. Identifying whether currently existing patient decision aids address the full range of these patient decision-making needs will better inform end-of-life decision support in clinical practice.
AIMS AND DESIGN: This systematic review aimed to (a) identify the range of patients' decision-making needs and (b) assess the extent to which patient decision aids address these needs.
DATA SOURCES: MEDLINE, PsycINFO and CINAHL electronic literature databases were searched (January 1990-January 2017), supplemented by hand-searching strategies. Eligible literature reported patient decision-making needs throughout end-of-life decision-making or were evaluations of patient decision aids. Identified decision aid content was mapped onto and assessed against all patient decision-making needs that were deemed 'addressable'.
RESULTS: Twenty-two studies described patient needs, and seven end-of-life patient decision aids were identified. Patient needs were categorised, resulting in 48 'addressable' needs. Mapping needs to patient decision aid content showed that 17 patient needs were insufficiently addressed by current patient decision aids. The most substantial gaps included inconsistent acknowledgement, elicitation and documentation of how patient needs varied individually for the level of information provided, the extent patients wanted to participate in decision-making, and the extent they wanted their families and associated healthcare professionals to participate.
CONCLUSION: Patient decision-making needs are broad and varied. Currently developed patient decision aids are insufficiently addressing patient decision-making needs. Improving future end-of-life patient decision aid content through five key suggestions could improve patient-focused decision-making support at the end of life.
Background: Breathlessness, a common symptom in advanced disease, is a distressing, complex symptom that can profoundly affect the quality of one's life. Evidence suggests that specialist palliative care breathlessness intervention services can improve physical well-being, personal coping strategies and quality of life. In the UK, the use of quality improvement methods is well documented in the National Health Service. However, within the independent hospice sector there is a lack of published evidence of using such methods to improve service provision.
Aim: The aim of this project was to reduce the waiting time from referral to service commencement for a hospice breathlessness service by 40%-from a median of 19.5 to 11.5 working days.
Methods: Using a quality planning and systems thinking approach staff identified barriers and blockages in the current system and undertook plan-do-study-act cycles to test change ideas. The ideas tested included offering home visits to patients on long-term oxygen, using weekly team 'huddles', streamlining the internal referral process and reallocating staff resources.
Results: Using quality improvement methods enabled staff to proactively engage in positive changes to improve the service provided to people living with chronic breathlessness. Offering alternatives to morning appointments; using staff time more efficiently and introducing accurate data collection enabled staff to monitor waiting times in real time. The reduction achieved in the median waiting time from referral to service commencement exceeded the project aim.
Conclusions: This project demonstrates that quality improvement methodologies can be successfully used in a hospice setting to improve waiting times and meet the specific needs of people receiving specialist palliative care.
Background: Palliative care aims to improve quality of life for patients with life-limiting illnesses. It is often linked to the care of people with cancer; however, patients with non-cancer end-stage conditions also have significant needs.
Objectives: The aims of this paper are to discuss common trajectories of deterioration in non-malignant conditions, consider possible barriers to palliative care referral, review the principles of the palliative care approach and illustrate specific factors relevant for common non-cancer conditions.
Discussion: The symptom burden and care needs for patients with end-stage, nonmalignant illnesses are similar to those of patients with advanced cancer. These patients benefit from a palliative approach, comprising management of the underlying condition and attention to symptoms, psychosocial needs and carer support. Advance care planning provides an opportunity to prepare for future illness episodes, including provision of end-of-life care. General practitioners are well placed to provide palliative care for patients with advanced non-cancer illnesses.
Although suffering in palliative care has received increasing attention over the past decade, the psychological processes that underpin suffering remain relatively unexplored.
Objective: To understand the psychological processes involved in the experiencing of suffering at the end phase of life.
Methods: Semistructured interviews were conducted with 20 palliative care inpatients from an academic medical centre in Kuala Lumpur, Malaysia. The transcripts were thematically analysed with NVIVO9.
Results: 5 themes of psychological processes of suffering were generated: (1) perceptions, (2) cognitive appraisals, (3) hope and the struggles with acceptance, (4) emotions and (5) clinging. A model of suffering formation was constructed.
Conclusion: The findings may inform the development of mechanism-based interventions in the palliation of suffering.
BACKGROUND: Factors facilitating/hindering concordance between preferred and received life-sustaining treatments may be distorted if preferences and predictors are measured long before death.
AIM: To examine factors facilitating/hindering concordance between cancer patients' preferred and received life-sustaining-treatment states in their last 6 months.
DESIGN: Longitudinal, observational design.
SETTING/PARTICIPANTS: States of preferred and received life-sustaining treatments (cardio-pulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, and nasogastric tube feeding) were examined in 218 Taiwanese cancer patients by a latent transition model with hidden Markov modeling. Multivariate logistic regression modeling was used to examine factors facilitating/hindering concordance between preferred and received life-sustaining-treatment states.
RESULTS: Concordance between preferred and received life-sustaining-treatment states was poor (40.8%, kappa value (95% confidence interval): 0.05 [-0.03, 0.14]). Patients who accurately understood their prognosis and preferred comfort care were significantly more likely to receive preferred life-sustaining treatments before death than those who did not know their prognosis but wanted to know, those who were uniformly uncertain about what life-sustaining treatments they preferred to receive, and those who preferred nutritional support but declined other life-sustaining treatments. Patient age, physician-patient end-of-life-care discussions, symptom distress, and functional dependence were not associated with concordance between preferred and received life-sustaining-treatment states.
CONCLUSION: Prognostic awareness and preferred states of life-sustaining treatments were significantly associated with concordance between preferred and received life-sustaining-treatment states. Personalized interventions should be developed to cultivate terminally ill cancer patients' accurate prognostic awareness, allowing them to formulate realistic life-sustaining-treatment preferences and facilitating their receiving value-concordant end-of-life care.
In the United States, the adult population that will need hospice and palliative care is expected to double in the next 40 years. In primary care, providers are often faced with tough decisions on how to manage patients' medications at the end of life. This article describes how to deprescribe in the last year of life.
We report the case of a 55-year-old woman who required extracorporeal membrane oxygenation for extreme respiratory distress after a liver transplant and eventually died. As is so often the case, this patient's values and wishes were not documented before she had a risky surgical procedure. Anesthesiologists, in partnership with surgeons, can participate in preoperative discussions exploring wishes and values and document them in advance directives which will help clinicians respect patients' preferences.
BACKGROUND: The process of advance care planning (ACP) encompasses learning about and planning for end-of-life (EOL) decisions, documenting preferences through legal forms known as Advance Directives (ADs), and having discussions with loved ones to share these preferences. While most ethnic minority groups have low ACP engagement and AD completion rates, Chinese Americans face additional challenges related to cultural beliefs and ACP.
PURPOSE: The purpose of this study was to estimate the impact of a culturally tailored nurse-driven educational intervention on the relationship between attitudes toward ADs and AD completion and ACP discussions.
DESIGN: Pre-posttest, repeated measures non-experimental design.
METHODS: A convenience sample of Chinese Americans participated in a culturally tailored nurse led AD and ACP workshop in English and Mandarin in a Chinese Community Center. Participants completed surveys before and after the workshop and at one-month follow-up.
RESULTS: Seventy-two Chinese Americans participated in this study. Most were female and born in China. Attitudes toward ADs improved after participating in the workshop and remained consistent at one-month follow-up. There was a significant positive relationship between attitudes and AD completion and ACP discussions.
CONCLUSIONS: Nurse-driven interventions improved engagement in the ACP process in Chinese Americans, a population thought to be averse to discussing death and dying and one with lower than average AD completion rates. Using culturally tailored interventions improves engagement in the ACP process.
CONTEXT: Low utilization of palliative care services warrant the development and testing of new solutions to educate and engage patients around the benefits of palliative care.
OBJECTIVES: We sought out to develop and test a novel, mobile health solution to prepare patients for an upcoming outpatient palliative care appointment.
METHODS: After developing a web-based tool called PCforMe (Palliative Care for Me), we conducted a randomized, active-controlled, trial of PCforMe. The primary outcome was the score on the System Usability Scale (SUS). Secondary outcomes were patient self-efficacy (measured by PEPPI) and change in knowledge (measured by a questionnaire). We compared PCforMe to three common online resources for patients seeking information about specialty palliative care.
RESULTS: 80 patients were randomized. There were no significant demographic differences. Mean SUS score for PCforMe was 78.2, significantly above the normative average SUS score of 68 (p-value<0.0001). Mean change in PEPPI score was -2.2 for PCforMe vs -1.7 for control group (p-value=0.72). Preparedness for an upcoming palliative care visit increased 50% in the intervention group versus 13.3% in the control group. Difference in the number of patients with improved knowledge regarding palliative care approached significance (p=0.06). Lastly, we found the no-show rate lower during Q1 2017 (during trial) versus Q1 2016 (before trial), at 11.7% versus 21% (p<0.05). Comparing the full calendar year 2016 versus 2017, we did not find a statistical difference (CY 2016 of 18.8% versus 15% in CY 2017; p=0.22).
CONCLUSION: PCforMe is a usable mobile health tool to educate and prepare patients for an upcoming palliative care appointment. Further research is needed to test effectiveness.
OBJECTIVES: The majority of people would prefer to die at home and the stated intentions of both statutory and voluntary healthcare providers aim to support this. This service evaluation compared the preferred and actual place of death of patients known to a specialist community palliative care service.
DESIGN: All deaths of patients (n=2176) known to the specialist palliative care service over a 5-year period were examined through service evaluation to compare the actual place of death with the preferred place of death previously identified by the patient. Triggers for admission were established when the patients did not achieve this preference.
RESULTS: Between 2009 and 2013, 73% of patients who expressed a choice about their preferred place of death and 69.3% who wanted to die at home were able to achieve their preferences. During the course of their illness, 9.5% of patients changed their preference for place of death. 30% of patients either refused to discuss or no preference was elicited for place of death.
CONCLUSIONS: Direct enquiry and identification of preferences for end-of-life care is associated with patients achieving their preference for place of death. Patients whose preferred place of death was unknown were more likely to be admitted to hospital for end-of-life care.
BACKGROUND: Effective training at medical school is essential to prepare new doctors to safely manage patients with palliative care (PC) and end of life care (EOLC) needs. The contribution of undergraduate PC course organisers is central but their collective views regarding role are unknown.
OBJECTIVE: To survey attitudes of PC course organisers regarding their course, organisation, the adequacy of training provided and level of personal satisfaction.
METHODS: An anonymised, multifactorial, web-based questionnaire was devised, tested, modified and then sent to lead PC course organisers at all UK medical schools.
RESULTS: Data were obtained from all 30 UK medical schools. Organisers agreed/strongly agreed (=agreed) that their PC course was highly rated by students (26, 87%). 25 (83%) agreed their course 'enabled misconceptions and fears about PC, death, dying and bereavement to be addressed', 'delivered quality PC training' (23, 77%), 'fulfilled General Medical Council requirements' (19, 63%), 'prepared students well to care for patients with PC/EOLC needs' (18, 60%) and 'enabled students to visit a hospice and see the role of doctors in caring for the dying' (17, 57%). Concerns were limited capacity to accommodate students (agreed 20, 66%) and variability in teaching according to location (15, 50%). Most agreed their institution recognised PC training as important (22, 73%), they felt supported by colleagues (21, 70%) and experienced cooperation between stakeholders (20, 67%). All agreed that PC training was essential for undergraduates, while 29 (97%) supported inclusion of a hospice visit in the curriculum. 27 agreed that their role was satisfying (90%), 3 disagreed (10%).
CONCLUSIONS: Approximately two-thirds of organisers were generally positive about their PC course, institution and role. A minority expressed concerns; these may reflect suboptimal PC training at their medical school and poor preparation of new doctors.