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What is a cookie?
A cookie is a small file of letters and numbers that we store on your browser or the hard drive of your computer if you agree. Cookies contain information that is transferred to your computer's hard drive.
What types of cookies are used?
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The quality of palliative care rests on seamless medical teamwork and close attention to an individual's needs. An open dialogue among physicians, nurses, patients, and their loved ones is a vital part of this process. The ability to discuss complex topics openly helps teams coordinate care more effectively, reduces stress for families, and ensures the patient's wishes are respected during clinical decision-making.
This selection brings together five international studies examining end-of-life communication from multiple perspectives. The authors analyse systemic issues in hospice nursing leadership, evaluate practical tools for outpatient consultations and family discussions, and explore barriers to communication with vulnerable and severely ill patients. Together, these works show that building trusting dialogue at all levels improves the overall effectiveness of care.
If you wish to continue any of the topics listed below through a discussion or webinar, please do not hesitate to contact us at info@paced.org.uk.
The quality of palliative care rests on seamless medical teamwork and close attention to an individual's needs. An open dialogue among physicians, nurses, patients, and their loved ones is a vital part of this process. The ability to discuss complex topics openly helps teams coordinate care more effectively, reduces stress for families, and ensures the patient's wishes are respected during clinical decision-making.
This selection brings together five international studies examining end-of-life communication from multiple perspectives. The authors analyse systemic issues in hospice nursing leadership, evaluate practical tools for outpatient consultations and family discussions, and explore barriers to communication with vulnerable and severely ill patients. Together, these works show that building trusting dialogue at all levels improves the overall effectiveness of care.
If you wish to continue any of the topics listed below through a discussion or webinar, please do not hesitate to contact us at info@paced.org.uk.
If you are a palliative care professional from Central Asia, the South Caucasus, Eastern Europe, or the Baltic States, or if you work to develop palliative care in these regions, we warmly invite you to join our community chat on Telegram. Please complete this form.
Moving Beyond the Medical Model: How Nursing Leadership Brings Humanity Back to UK Hospices
This article draws on the outcomes of a 10-month educational programme for 24 senior nurses from eight UK hospices. The project was launched in response to growing concern within the professional community: as palliative care has become more deeply integrated into the general healthcare system, it has become excessively medicalised. Physicians have established a rigid hierarchy that sidelines the original hospice philosophy and silences nurses, reducing them to mere executors of others' decisions. Using communication and analytical methods, the participants reframed routine processes within their organisations. The nurses learned to identify and articulate the hidden values of their work, advocate for patient autonomy, and implement a person-centred approach. The authors conclude that nurses possess the authority and potential to reshape palliative care, and that such programmes empower them to reclaim leadership within teams and protect the core principles of the hospice movement from the pressure of the medical model.
This article draws on the outcomes of a 10-month educational programme for 24 senior nurses from eight UK hospices. The project was launched in response to growing concern within the professional community: as palliative care has become more deeply integrated into the general healthcare system, it has become excessively medicalised. Physicians have established a rigid hierarchy that sidelines the original hospice philosophy and silences nurses, reducing them to mere executors of others' decisions. Using communication and analytical methods, the participants reframed routine processes within their organisations. The nurses learned to identify and articulate the hidden values of their work, advocate for patient autonomy, and implement a person-centred approach. The authors conclude that nurses possess the authority and potential to reshape palliative care, and that such programmes empower them to reclaim leadership within teams and protect the core principles of the hospice movement from the pressure of the medical model.
Evaluating the PRECURSOR Communication Tool in Outpatient Oncology
This pilot study evaluated the PRECURSOR (PRior Elicitation of Communication Intentions for Oncology Encounters) methodology. Before their consultation, patients with advanced cancer were given a simple booklet outlining the domains of palliative care and asked to list their questions. The study confirmed that this approach is highly feasible and well-received by patients, though oncologists remained somewhat reserved about the lists. Crucially, the method made oncology visits significantly more patient-centred: individuals in the intervention group initiated 46% of conversations about their unaddressed needs, compared with 37% in the usual care group. Consequently, discussing prepared lists with physicians led to a major drop in anxiety and stress for both patients and their families.
This pilot study evaluated the PRECURSOR (PRior Elicitation of Communication Intentions for Oncology Encounters) methodology. Before their consultation, patients with advanced cancer were given a simple booklet outlining the domains of palliative care and asked to list their questions. The study confirmed that this approach is highly feasible and well-received by patients, though oncologists remained somewhat reserved about the lists. Crucially, the method made oncology visits significantly more patient-centred: individuals in the intervention group initiated 46% of conversations about their unaddressed needs, compared with 37% in the usual care group. Consequently, discussing prepared lists with physicians led to a major drop in anxiety and stress for both patients and their families.
Effectiveness of the Family Talk Intervention (FTI) Programme in Paediatric Palliative Care
Swedish researchers evaluated the effectiveness of a family discussion programme designed to support families facing a child's severe, life-threatening illness. The programme comprises six sessions with parents and children, both together and separately, and aims to break the ‘mutual silence’ by helping everyone talk openly about the diagnosis, prognosis, and underlying fears. The project included 105 participants from 29 families (the ill children, their parents, and siblings). Surveys were conducted before the programme, immediately after completion, and six months later. The results showed sustained improvements in family communication, increased satisfaction with the home environment, and greater parental confidence. The most critical clinical outcome was a long-term reduction in anxiety for all family members, alongside a drop in children's behavioural and emotional difficulties immediately after the course. The authors concluded that the FTI approach, by engaging the family as a whole, has proven its value and should be integrated into routine paediatric palliative practice.
Swedish researchers evaluated the effectiveness of a family discussion programme designed to support families facing a child's severe, life-threatening illness. The programme comprises six sessions with parents and children, both together and separately, and aims to break the ‘mutual silence’ by helping everyone talk openly about the diagnosis, prognosis, and underlying fears. The project included 105 participants from 29 families (the ill children, their parents, and siblings). Surveys were conducted before the programme, immediately after completion, and six months later. The results showed sustained improvements in family communication, increased satisfaction with the home environment, and greater parental confidence. The most critical clinical outcome was a long-term reduction in anxiety for all family members, alongside a drop in children's behavioural and emotional difficulties immediately after the course. The authors concluded that the FTI approach, by engaging the family as a whole, has proven its value and should be integrated into routine paediatric palliative practice.
Systematic Review of Communication Barriers in Palliative Care for Adults with Intellectual Disabilities
This systematic review analysed 52 qualitative and quantitative studies published in international databases up to 2019, focusing on palliative care for terminally ill adults with intellectual disabilities in hospitals, hospices, residential care facilities, and at home. All reviewed studies were conducted in high-income countries, primarily the UK, the US, and the Netherlands. The overall analysis revealed a critical deficit of data gathered directly from patients: of 2,970 participants, individuals with intellectual disabilities made up only 1%, and their family members just 1.3%, while 97% of the data came from healthcare and social workers. The information gap leads directly to communication barriers. Due to a lack of specialised training, hospice staff often struggle to communicate with these patients, while residential facility staff do not always recognise terminal-stage symptoms in time. Furthermore, non-verbal expressions of physical pain (such as behavioural changes or food refusal) were frequently misinterpreted across the studies as part of the patient's psychiatric profile, compromising effective pain management. The authors conclude that the existing body of research relies almost entirely on staff perspectives. To develop effective clinical guidelines, future projects must shift their methodology towards the direct inclusion of patients and their families.
This systematic review analysed 52 qualitative and quantitative studies published in international databases up to 2019, focusing on palliative care for terminally ill adults with intellectual disabilities in hospitals, hospices, residential care facilities, and at home. All reviewed studies were conducted in high-income countries, primarily the UK, the US, and the Netherlands. The overall analysis revealed a critical deficit of data gathered directly from patients: of 2,970 participants, individuals with intellectual disabilities made up only 1%, and their family members just 1.3%, while 97% of the data came from healthcare and social workers. The information gap leads directly to communication barriers. Due to a lack of specialised training, hospice staff often struggle to communicate with these patients, while residential facility staff do not always recognise terminal-stage symptoms in time. Furthermore, non-verbal expressions of physical pain (such as behavioural changes or food refusal) were frequently misinterpreted across the studies as part of the patient's psychiatric profile, compromising effective pain management. The authors conclude that the existing body of research relies almost entirely on staff perspectives. To develop effective clinical guidelines, future projects must shift their methodology towards the direct inclusion of patients and their families.
Evaluation of Brain-Computer Interfaces for Communication with ALS Patients
The authors of this study conducted a landscape analysis, interviewed 15 leading experts, and convened a medical panel to assess the effectiveness of brain-computer interfaces (BCIs) for patients with amyotrophic lateral sclerosis (ALS). In the late stages of the disease, individuals lose speech and facial expression, becoming ‘locked-in’ within their own bodies, which strips away their ability to control their lives and make palliative decisions. The researchers reviewed 21 tools—ranging from quality-of-life questionnaires to technical metrics such as typing speed—that could theoretically support alternative communication. However, the analysis showed that no existing global scale can adequately assess the real-world benefits and functionality of BCIs. Current medical tests are not designed for the specific nature of brain-computer systems, and they fail to account for rapid patient fatigue and the legal nuances of recording consent. The researchers point to a serious gap in practice and call for the urgent development of new, dedicated evaluation standards to restore severely ill patients' voices.
The authors of this study conducted a landscape analysis, interviewed 15 leading experts, and convened a medical panel to assess the effectiveness of brain-computer interfaces (BCIs) for patients with amyotrophic lateral sclerosis (ALS). In the late stages of the disease, individuals lose speech and facial expression, becoming ‘locked-in’ within their own bodies, which strips away their ability to control their lives and make palliative decisions. The researchers reviewed 21 tools—ranging from quality-of-life questionnaires to technical metrics such as typing speed—that could theoretically support alternative communication. However, the analysis showed that no existing global scale can adequately assess the real-world benefits and functionality of BCIs. Current medical tests are not designed for the specific nature of brain-computer systems, and they fail to account for rapid patient fatigue and the legal nuances of recording consent. The researchers point to a serious gap in practice and call for the urgent development of new, dedicated evaluation standards to restore severely ill patients' voices.
DIGEST