iLIVE is a 4-year EU-funded research project involving 14 project partners from private and public clinical and academic settings. Launched in 2019 in Rotterdam, the project includes The Institute for Palliative Care and project partners from 12 other countries worldwide. The work is led by Professor Agnes van der Heide, from Erasmus University Medical Center, Rotterdam, and the Chair of The International Collaborative for Best Care for the Dying Person, Professor John Ellershaw from Liverpool University.

The aim of the iLIVE project is to develop new, evidence-based and sustainable approaches to alleviate the symptoms and suffering that arise at the end of life for patients with advanced chronic diseases and their families. The project aims to have a global impact on the experience of dying; that people continue to live until they die, ’live well, die well’.

The iLIVE project consists of the following components:

• An observational study to better understand the experience of death and dying. Participants’ concerns, expectations and preferences will be studied from the perspective of cultural aspects, age, gender and socio-economic diversity in; as well as ethical issues in care and research.
• An experimental study on medication management to alleviate physical symptoms during the last phase of life with the introduction of a digital decision support system.
• A training programme for volunteers focusing on psychosocial support for dying patients in hospitals and their relatives.
• A cost-effectiveness study of the digital decision support for medicines and of the volunteer programme.
• A sustainable international programme for quality development and research and for the development of international quality indicators for the care of the dying patient.
• A plan to inform and engage people about dying and death and actively support and encourage citizen involvement and influence over end-of-life care.

Project period: 2019-2023
Do you want to know more about this research? Visit the iLIVE website

The covid-19 pandemic has had an impact on the experience of death and dying for patients, relatives and health professionals. Measures implemented to reduce the risk of infection have had a major impact on the whole of society and health care, not least end-of-life care. What would normally be taken for granted, such as prioritising the individual’s own wishes, the presence of relatives, friends and staff, and the ability of staff to support relatives, has been at risk of not happening. This applies to patients dying of covid-19, but also to patients dying for other reasons.

This project studies how communication between patients, their relatives and health professionals has been made possible using digital tools and whether the possibilities for farewells of loved ones during the pandemic could contribute to improving the care of patients in the future. The study examines how funeral ceremonies have been adapted to the pandemic restrictions, and how these adaptations have affected relatives. The experience of death is related to the progress of the grieving process, providing a longer-term picture of how the covid-19 pandemic has affected people who lose a loved one.

This study can provide good guidance on how to best support patients and their families at the end of life during future pandemics or other crises. Overall, the Co-LIVE study provides valuable information on how we can improve the care of the dying and support their relatives after death.

2,400 relatives of people who have died between March and September 2020 have been randomly selected and invited to complete a survey about their experiences of end-of-life care. Those who completed the survey were then offered the opportunity to complete a further survey three months later and may be selected for a follow-up interview.

The Institute for Palliative Care is part of a collaboration with research teams from 11 countries that received a grant to study concerns, expectations and wishes at the end of life (read more about the iLIVE project here). Several of the participating countries are conducting similar studies to this one, which will allow the results of the pandemic’s impact to be compared across countries and cultures.

Do you want to know more about this research? Contact: 

Maria Schelin
Docent, Lund University
maria.schelin@skane.se 
Profile at Lund University

Early contact with palliative care in symptomatic cytostatic treatment of upper GI cancer (esophageal, ventricular, pancreatic, hepatobiliary) and in second-line palliative cytostatic treatment of colorectal cancer – an open randomized investigator-initiated trial. 

Palliative care units have specialist expertise in pain and anxiety relief and general symptom relief and care for patients in the non-terminal stages of their cancer. A palliative care unit is therefore well placed to make life easier for seriously ill patients and their families through close monitoring of symptom relief treatment.

Patients with untreatable gastrointestinal cancer often have severe symptoms of their disease as well as side effects related to the tumour treatment. The need for medical care can therefore be high, with visits to the emergency department as well as hospitalisation. Today, several studies have shown that early contact with a palliative care unit can reduce patients’ disease- or treatment-related symptoms, improve patients’ quality of life and reduce end-of-life chemotherapy. The American Society for Clinical Oncology (ASCO) recommends increased collaboration around patients in the palliative stage of their tumour disease, between specialised palliative care and tumour treatment units, for better use of both oncological and purely symptomatic therapies.

The Allan study aims to investigate the effect on patient quality of life when palliative care is integrated early with oncological treatment for patients with untreatable upper gastrointestinal cancer and, in parallel, to study the effect on the patient’s next of kin. The study is an open randomized trial between early contact with palliative care unit or connection when needed, with palliative chemotherapy, first line, for cancer of esophagus, ventricle, pancreas, liver/bile ducts and with second line palliative chemotherapy for patients with colorectal cancer. Patients will be offered participation in the study at the time of their visit to the oncology clinic’s medical unit in Lund or Malmö.

The first patient was included in the Allan study in December 2014 and the study was fully included in May 2021. The project is funded by Region Skåne, Södra Sjukvårdsregionen and Lions Forskningsfond Skåne.

Do you want to know more about this research? Contact: 

Mikael Segerlantz
Docent, Lund University
mikael.segerlantz@skane.se
Profile at Lund University

Symptoms, problems and care needs among patients newly diagnosed with oesophageal and gastric cancer. Implications for early palliative care.

Every year, around 1300 people are diagnosed with oesophageal or gastric cancer in Sweden. The average 5-year survival rate is only 28-42% and many are already living with a severely impaired quality of life and extensive physical, psychological, social and existential issues at the time of diagnosis. The disease also has a strong negative impact on the life situation and well-being of those close to them. Given the poor prognosis and the complexity of symptoms and problems, care should be based on a palliative approach from an early stage.

Studies show that early integration of a palliative approach promotes quality of life and reduces the burden of multiple symptoms and problems for people with advanced cancer and their relatives. Optimal support needs to be tailored to the specific patient group and the needs of their relatives. For the current patient group and their relatives, early palliative care interventions are not specifically described or how they can be coordinated. Similarly, there is a lack of mapping the symptoms, problems and care needs of the group as a whole, with a focus on the early stage of the disease. Thus, there is a need to increase knowledge about symptoms, problems and care needs in the early stage of oesophageal and gastric cancer and to develop a tailored model for early integrated palliative care.

This research project consists of two phases and includes a total of eight sub-studies. The overall aim of phase one is to describe and compare the symptoms, problems and care needs of people newly diagnosed with oesophageal or gastric cancer, and to investigate how people with terminal illness cope with their daily lives. The aim of phase two is to develop a model of early integrated palliative care for people with incurable oesophageal or gastric cancer and their relatives, which is person-centered and proactive.

The research will be conducted between 2018 and 2027, it is funded by the Sjöberg Foundation and ALF.

Do you want to know more about this research? Contact: 

Sofia Kårmark
PhD, Lund University
E-post: sofia.karmark@med.lu.se
Profil på Lunds universitet

Karin Dahlhammar
PhD, Lund University
E-post: karin.dalhammar@mau.se

The Swedish Palliative Care Guide (S-PCG) has been one of our key areas for quality improvement since the start of The Institute for Palliative Care and is now implemented in over 400 care units across Sweden. All measures in the S-PCG are based on evidence and proven experience and in this project we will examine the scientific evidence for the care plan as a whole.

The project covers specialised care, general palliative care and registry studies. We plan to implement and evaluate S-PCG in specialised care for COPD and heart failure patients, these groups have in the past often missed out on palliative care, which has frequently been associated with cancer care. Furthermore, we will implement and evaluate S-PCG in special care homes and ”mobile teams” – ambulatory geriatric care teams.

In all of these studies, we will evaluate the experiences of patients, staff and often relatives, using both quantitative and qualitative methods. Furthermore, we will evaluate the impact of S-PCG using the Swedish Palliative Care Register and our own data collected when units started working according to S-PCG. We will also develop an algorithm to identify patients who may be in need of palliative care interventions based on Swedish care databases. Finally, we will use S-PCG part 1 to assess and categorise palliative care needs in emergency departments, in order to facilitate decision making.

This project started up in 2022 and is funded by the Kamprad Family Foundation. The project will result in at least one PhD thesis and several other scientific publications. Sofia Persson is a PhD student in the project and Maria Schelin is leading it.

Do you want to know more about this research? Contact: 

Maria Schelin
Docent
maria.schelin@skane.se 
Profile at Lund University

The Swedish Palliative Care Guide (S-PCG) has been one of our key areas for quality improvement since the start of The Institute for Palliative Care and is now implemented in over 400 care units across Sweden. All measures in the S-PCG are based on evidence and proven experience and in this project we will examine the scientific evidence for the care plan as a whole.

This project focuses on people with dementia and their carers, with the aim of evaluating the different parts of the S-PCG and investigating other factors that we believe may be important for dementia care, with a focus on the end of life. Methodologically, the project is broadly composed with register studies, implementation studies and focus group interviews.

The research is funded by the Swedish funding agency FORTE, which has granted us a 3-year grant of SEK 4.9 million in its call ”Knowledge and ways of working for more equal, inclusive and dignified ageing”. The project started in 2023.

Do you want to know more about this research? Contact: 

Maria Schelin
Docent
maria.schelin@skane.se 
Profile at Lund University

Medical psychology is primarily concerned with the psychological aspect of the reciprocal relationship and interaction between physician, patient and relevant people from the patient’s immediate environment. The main task of medical psychology is:

To protect the patient and the physician from undesirable consequences of the technological development of medicine, narrow specialization and bureaucratization of health care activities.
To use psychological findings and procedures in the prevention of disease and in the treatment and rehabilitation of patients.
With advances in medical science, the role of the health care provider has become increasingly about communication. In the past, when the possibilities for early diagnosis were limited, patients were informed that they were seriously ill only when symptoms had become prominent. Now, many diagnoses can be made before the patient experiences symptoms. In addition, information about what a diagnosis means in relation to complications, disability, treatment and early death is widely available to the patient through other forums. Increasingly earlier in the course of the disease, the healthcare provider is able to answer questions about various treatments and consequences. Communication around difficult decisions has become an increasingly important part of the doctor’s work. The role of the patient in relation to the medical profession has also been gradually strengthened, placing increasing demands on care and communication.

The aim of this research is to generate knowledge about psychological aspects of serious illness, where communication and empathy are central. This is to be achieved by examining the encounter between doctors and patients, relatives, and medical record reviews.

Do you want to know more about this research? Contact:
Mattias Tranberg
PhD
Email: mattias.tranberg@skane.se
Profile at Lund University

Every year, around 3,500 children and young people lose a parent. Most cope with the situation and return to a well-functioning everyday life, but there are those who are at increased risk of negative consequences, such as mental illness or self-harming behaviour. Family unity appears to have a significant impact on the well-being of children and young people, but research is limited, especially on young people’s own perceptions of family unity and its long-term effects on their health and well-being.

According to the Swedish Health Care Act, every health care professional has a duty to pay special attention to a child’s need for information, advice and support when the child’s parent or another adult with whom the child is permanently living has a serious illness or dies.

Effective support requires knowledge of children/young people’s experience of what happens before and after the death, in the family but also in the meeting with health professionals. In the hope of contributing to this knowledge, Dröfn Birgisdóttir is exploring family cohesion and its impact on long-term health and well-being, as well as the grief reactions and experiences of young adults who lost a parent to cancer as teenagers.

This research is part of Dröfn Birgisdóttir´s doctoral dissertation, which began in 2016 and is expected to last until the fall of 2022.

Do you want to know more about this research? Contact: 

Dröfn Birgisdóttir
PhD
drofn.birgisdottir@skane.se
Profile at Lund University

This research explores the caring relationships that exist around patients at the end of life and their next of kin using an interdisciplinary approach incorporating perspectives from both public health and feminist theory. Much current research in the palliative care context underscores the importance of a public health perspective to end of life issues, particularly the role of supportive social networks in contributing to well-being and reducing negative health events.

Feminist literature has also significantly contributed to developing knowledge about caring relationships, both formal and informal, in maintaining the social fabric of communities. In my empirical work with patients and relatives, the research examine how their social relationships contribute to quality of life, as well as the political dimensions of public health strategies which promote community-based approaches to palliative care.

Do you want to know more about this research? Contact:
Jamie Woodworth
PhD
jamie.woodworth@med.lu.se
Profile at Lund University