Patient Navigators: What works, how, when and for whom?

Older people with cancer are at disadvantage when it comes to timely access to high-quality supportive, palliative, and end-of-life care. Dr. Joni Gilissen, Dr. Barbara Gomes and Prof. Lieve Van den Block hope that the new EU NAVIGATE project might help patients and their families get the care they need, through the work of patient navigators.


EU Navigate Consortium at the project kick off meeting.

Cancer disproportionately affects older people. In 2020, 60% of the estimated new diagnoses and 73% of estimated deaths occurred in people 65 years and older. Cancer care can be highly fragmented, complex and often difficult to navigate for patients and families, compromising care coordination and continuity, and patient and relative experience. Access to high-quality supportive, palliative and end-of-life care is often limited, especially for those who are older, living in rural or materially deprived areas, or who have lower educational and/or socioeconomic status. Additionally, although cancer care in Europe is highly advanced in achieving cures or prolonging lives, it still has a limited focus on psychological, social, existential, and practical care needs. Current cancer services also insufficiently address the needs of family caregivers, who fulfil essential care tasks, and provide practical and emotional help.

The intervention program

The overall aim of EU NAVIGATE is to implement a patient and family-centred navigation intervention for older cancer patients across supportive, palliative, and end-of-life care, to see if and how it makes a difference for patients, families, and care providers, whether it is cost-effective, and how it can be implemented in different healthcare systems in Europe.

For this project, we will carefully adapt Nav-Care©* to our European and local contexts. Navigation interventions are non-pharmacological interventions that aim to support, educate, and empower patients and families, and address individual and community barriers to timely access to healthcare and related services and resources. Their central component is a patient navigator, a dedicated person (with or without a health-related background) who is trained and engages with patients on an individual basis. Although there may be some overlap, navigation can be distinguished from care management/coordination as it is a much broader, more supportive role, grounded in frameworks of patient empowerment and health promotion. Navigators are not members of a healthcare team but instead help with navigating across services and advocate for services which a patient is not getting, with a focus on removing barriers to care. Navigation was originally developed in the early 90’s in New York to address barriers and health disparities related to cancer care, particularly regarding screening and early diagnosis. Since then, programs with varying features have been developed and tested, mostly in the US and Canada. With EU NAVIGATE, we aim to develop navigation in different European Union healthcare contexts and evaluate its outcomes.

What we will evaluate

Effectiveness and cost-effectiveness will be evaluated through an international pragmatic randomised controlled trial including 532 cancer patients, aged 70 years and older, and their caregivers. The intervention group receives NavCare-EU from the onset and the control group will receive it six months later. At this time point, we will compare outcomes in the two groups, i.e., NavCare-EU + standard care vs. standard care alone. The primary endpoints are patient’s quality of life and well-being. The trial will run over 30 months. We will perform mixed-method subgroup analyses and process and implementation evaluations in and across countries to better understand what works, how, when and for whom.

What we hope to achieve

One of the explicit goals of the intervention is to ensure equitable access to needed health and social care. The purpose of the pragmatic trial is to inform clinical and policy decisions by providing evidence to encourage further adoption of the intervention into real-world practice. By analysing barriers and opportunities we hope to contribute to re-invigorating and enhancing timely social inclusion and active engagement of cancer patients. NavCare-EU will be a freely available program (with tools for training and support) in which volunteer and/or professional navigators support people to access the local resources and services they need, while providing companionship and emotional support. We believe this can enhance access to the care that people need and improve their experience during this difficult time.

* Nav-Care was developed in 2009 and has been evaluated and refined in different areas of Canada by Pesut & Duggleby. It specifically focuses on older adults with declining health. Find out more about the original Nav-CARE© Programme here.

The authors are writing on behalf of the EU NAVIGATE consortium. This project is a collaboration between seven countries and three European Union organisations, coordinated by the End-of-Life Care Research Group of the Vrije Universiteit Brussel (VUB) and Ghent University. It is funded by the European Commission’s Horizon Europe programme under Grant Agreement No. 101057361.

Links and resources

  • Learn more about EU Navigate here and follow on Twitter@EuNavigate.
  • Find out more about projects supported by the EAPC here.
  • Read about more EU projects on the EAPC blog here.

The EAPC is delighted to be a core partner in a range of large EU-funded studies, with knowledge transfer and stakeholder engagement as primary focuses. To learn more about the EAPC role in this, and other projects, click here.

About the authors

Joni Gilissen, PhD, is a senior social health scientist at the End-of-Life Care Research Group (VUB & UGent), Belgium, and a senior Atlantic Fellow for Equity in Brain Health. During EU NAVIGATE, Joni will coordinate the adaptation, standardisation, and pilot testing of the NavCare-EU intervention and training program. ORCID: 0000-0002-5388-495X.  Twitter: @JoniGilissen.

Barbara Gomes, PhD, is the head of the Palliative, End of Life and Bereavement Care Research Group at the Faculty of Medicine, University of Coimbra. In EU NAVIGATE, Barbara is the Portuguese partner and co-leads the sub-group and country comparative analyses of the NavCare-EU intervention, to find out “what works best for whom”. ORCID: 0000-0001-8149-1806. Twitter: @B_Gomes_

Lieve Van den Block, Professor, is the head of the Aging and Palliative Care Research Programme at the End-of-Life Care Research Group (VUB and UGhent) in Belgium. She is Principal Investigator and coordinator of EU NAVIGATE.


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Posted in EAPC COLLABORATIVE PROJECTS, EU Navigate, PATIENT & FAMILY CARE | Leave a comment

Don’t Say She Lost Her Battle: making a film about my mum’s death.

The words we use matter. Especially when discussing subjects that inform end-of-life decisions. Today, Oisín Liam Power, Irish writer and film maker, tells us about the inspiration behind his new short film – and why metaphorical war language should be carefully considered if used in discussions about cancer.


Oisin Liam Power with the portrait of Mary, painted by Jacob Gourley (Instagram:j.gourleyart).

September 2019. I got the call: I had to come home, my mum Mary was dying. I booked train tickets from Newcastle to the Wirral and ordered a camera, direct to my family home, determined to film as much of the next few days (it turned out to be ten) as possible. Why? Because Mary and I were part way through a short film about one of our shared dislikes: metaphorical war language often used to describe her inflammatory breast cancer.

When undergoing her final wound changing – a painful, laborious process – Mary was determined to be filmed. She wanted to help me continue the film, allowing me to collect hours of footage, from which I would eventually sculpt a narrative shape. This was consistent with Mary’s behaviour, ever since her cancer became ‘incurable’ two years previously. I remember thinking that Mary took a lot upon herself: she shocked her undertakers by turning up to plan her own funeral; she decided, having let every type of available chemo run its course, that she didn’t want to ’try’ them again; even two days before she died, having spent her career as a community pharmacist, Mary was requesting specific dosages of medication, to which her GP obliged.

Mary Lost Her Battle was intended to build on a different short film that I made while in university, which explored my feelings of anticipatory grief – a term I only recently learned thanks to the Good Grief Festival. Whereas the university film looked at Mary’s illness from my perspective, Mary Lost Her Battle aimed to give Mary herself a voice. Of course, we hadn’t planned for her to die during the filmmaking process. Mary’s death left me unsure about how to represent her, given that she couldn’t comment on her portrayal in the film. I didn’t touch any of the footage for months, letting the idea ruminate while grieving with my family.

Eventually, I began painstakingly categorising the footage I’d collected. Although the film is only five minutes long, over a hundred hours’ worth of footage had to be sorted through. During this process, I rediscovered an old interview I had conducted with Mary when I was making my first short film at university. Here, Mary expressed how, by rejecting war language, she was allowing herself to make decisions untainted by subtle pressures and expectations to ‘fight’. War language isn’t just an issue of semantics. It affects attitudes to treatments and end-of-life choices, which David J Hauser discusses in his starkly named paper Battle metaphors undermine cancer treatment and prevention and do not increase vigilance.

Mary understood what she wanted to do with her remaining time on the planet, and she had a brilliant multi-disciplinary palliative team who supported her decisions. Sifting through the footage, I appreciated what Mary’s decisions meant to all of us. Despite suffering from immense pain, she was able to die in her own home, surrounded by friends and family, after enjoying a last meal of afternoon tea and ice cream.

Mary was empowered to die a death on her own terms. I now appreciate the preparation work, and external support, needed to make that happen.

Links and resources:

  • Watch Mary Lost Her Battle here.
  • Let Oisín know what you think about this film here. Any feedback would be gratefully received and will help inform his future work.

About the author:

Oisín Liam Power is a second-generation Irish writer and filmmaker. He grew up on the Wirral and has since moved to Newcastle, where he completed a Master’s in Creative Writing. He works across various forms: prose, film, script and poetry. And he draws heavily upon personal experience to create realistic, relatable narratives.  Twitter: @oisinliampower. Instagram: @oisinliampower.


SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

  • Register now!  Early Bird rate until 1st March 2023.
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Posted in ADVANCE CARE PLANNING, INTERVIEWS & TRIBUTES, PATIENT & FAMILY CARE | Leave a comment

A life or death decision? Who should decide who receives ICU care.

For the next in our intensive care and palliative care series, Pål Klepstad, ICU medical director and professor in Norway, reflects on who should be making decisions about whether intensive care treatment is in a patient’s best interest.


Photo by Revital Nave, Israel. Winner of 2019 EAPC 16th World Congress Photo Competition.

For patients and their relatives, admittance to the Intensive Care Unit (ICU) is abrupt, dramatic and usually life-threatening. Treatment involves invasive procedures, often sedation, and patients are attached to monitors, intra-arterial cannulas and central intravenous lines (IV). ICU treatment is often painful for patients, physically and psychologically. For relatives, it represents an acute crisis and, in many countries, a significant financial burden for them.  Moreover, even in rich countries ICU therapy can be a limited resource due to lack of capacity, including having enough qualified ICU nurses.

This raises the need for end of-life discussions. Here are two patients from my own department:

Male patient with Chronic Obstructive Pulmonary Disease (COPD) is admitted to hospital. He has really bad lung test results, muscle wasting and general ill health. The patient is not admitted to the ICU because his short-term prognosis is poor, and we will only add to his suffering with ICU therapy. 

Female patient who is immunocompromised. She has cancer, is sedated and on a ventilator due to pneumonia. She is admitted to ICU but despite broad-spectrum antibiotics, she has increasing organ failure. Life prolonging treatment in ICU is stopped.

There is one important question – who should decide if ICU treatment is given?

Surely the patient should decide, as a patients’ autonomy is absolute? In Norway, the answer is actually both yes and no.  Yes, because the patient can refuse to receive treatment. They can tell health care staff that they are ready to let fate happen and do not want to suffer any more from their illness. On the other hand, the patient cannot request treatment that the physicians consider futile. The ethical argument for this is that the physician’s duty is to do no harm. The physicians knows that intensive care therapy can inflict pain and anxiety without improving survival and is obliged to spare the patient this suffering. The problem is not always so clear cut though, as some patients and relatives may have a different threshold for what they would consider futile, compared to a healthcare professional. For instance, is a 20 % chance to achieve three months longer survival worthwhile to inflict pain to a patient and to use health care resources? Importantly, unneeded ICU therapy given to one patient means that other patients risk not receiving intensive care if they can’t be admitted to ICU due to lack of healthcare capacity.

Many ICU patients are too incapacitated to be able to understand and decide on their care. So, should relatives decide? Patient’s relatives cannot request treatment that the ICU physicians consider futile.  What they may be able to do is tell us what the patient may have wanted to happen.

What about the society deciding? On one level, society does decide. The society decides the magnitude of ICU delivery – a society that does not adequately finance the staffing of ICU departments decides to let some patients with treatable condition die. Thus, even if there is no direct participation in individual cases, the society decides the framework into which ICU physicians have to prioritise who can receive intensive care.

To summarise, the decision to give or withdraw life sustaining ICU therapy is based on the patient’s prognosis. Some hope for survival can mean that ICU therapy will be started, and no hope of survival means that ICU therapy is unethical, both in respect to the actual patient, to other patients’ access to ICU and to the society. For the latter group, the patients are better to be offered good end-of-life care. End-of-life care can be given by intensivists within the ICU, in specialised palliative care units, or in general wards, as appropriate for each individual patient and for each hospital’s organisation. Irrespective of the setting where patients receive care, the best treatment is often based upon collaboration between the various involved medical healthcare staff.

Ideally, for those with chronic diseases – and perhaps even for those who haven’t – a discussion about potential ICU care should take place before the onset of acute critical illness. As well as with the patient, an advanced care plan discussion can include relatives, general practioners and relevant hospital specialist physicians. In the acute setting, in-depth knowledge of the patient’s acute disease, chronic illnesses, frailty, organ failure and ICU treatment options is needed to evaluate a patient’s prognosis. Knowing the patient’s wishes as well, means a clear decision can be made.

In clinical medicine, this combined knowledge primarily belongs to the ICU specialist. Does this make the ICU specialist a sort of god-sent person who decide who should live and who should die? No, that is fate – or perhaps, for religious persons, higher forces that decide. However, often the ICU physicians are in the best position to interpret what fate has decided.

Links and resources

Read the other blogs in the EAPC’s Palliative Care and ICU series here.

About the author

Pål Klepstad is an intensivist working within ICU care for the last 30 years. He has also been involved in research in palliative medicine, in particular, topics related to opioid pharmacology and symptom control. He is one of the authors of the Use of opioid analgesics in the treatment of cancer pain: evidence-based recommendations from the EAPC. Orcid: 0000-0003-2804-8447.

Prof. Pål Klepstad.

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Posted in ADVANCE CARE PLANNING, Palliative Care and Intensive Care | Leave a comment

Apply now! Nominate yourself or a colleague for the EAPC World Congress 2023 Researcher Awards.

The annual EAPC Congress is among the most well-known and respected events in palliative care. It hosts healthcare professionals, policymakers, scientists and experts from across the world. The EAPC Researcher Awards are always a highlight, recognising outstanding scientific contributions to palliative care research which significantly impacts clinical practice, education, policy and public advocacy. Prof. Dr. Sandra Martins Pereira and Prof. Dr. Agnes Csikós, Co-Chairs of the Scientific Committee of the 18th EAPC World Congress, tell us more.


The 18th EAPC World Congress in Rotterdam in June 2023 is your chance to nominate yourself or a colleague for the Awards. There are three categories for the Awards.

  • Early Researcher Award: The candidate should be at the early stage of a research career and hold a higher degree (PhD or equivalent).
  • Post-doctoral Award: The candidate should hold a PhD or equivalent, have performed independent research and have a substantial publication list.
  • Clinical Impact Award: The candidate should hold a clinical/academic qualification or equivalent and be involved in clinical research and practice.

Why should you apply? As a winner of the EAPC Researcher Award, you will benefit from:

  • acknowledgement of your work by palliative care colleagues and experts
  • impressive addition to your CV
  • visibility in the scientific and clinical fields, with organisations involved in palliative care and public health
  • networking opportunities and widening your list of contacts; opening doors and conversations with experts in the field
  • opportunities to improve your research, by exploring your research further with experts you meet thanks to the award; sharing information and ideas among scientific, clinical and other areas
  • self-confidence in your research competencies
  • and last, but not least, the experience of being an inspiring example to others who may have doubts about applying and/or especially about self-nominating.

Take a look at the stories of previous winners published on this blog. Professor Mark Taubert, winner of 2019 EAPC Researcher Clinical Impact Award, comments about his award:

‘When I learned I had won, I was elated. But without being overly humble, I was also perplexed, for when you are competing on a world stage with so many worthwhile projects you can’t quite see your own one winning. I really encourage people to apply and demonstrate what they have done. However local your project, there is always some learning, and I do sometimes feel that great projects out there get virtually no further attention. Putting your hard work on a bigger stage may initially feel outside your comfort zone, but it could be seen as a duty, and these awards are about spreading the word very widely. So if you are reading this and are thinking ‘maybe…’, then stop overanalysing and nominate yourself about what you have done!’

Dr Jane Bates, winner of the 2021 EAPC Early Research Award says about her award:

‘Most palliative care research comes from high income countries of the Global North. This award has given me the opportunity to present research from a very different setting which I hope will inform and broaden the perspectives of the EAPC community.  More funding guided by local priorities and perspectives is desperately needed to explore this area across a range of countries and settings.’

Nominate yourself or a colleague for the EAPC World Congress 2023 Researcher Award now.  Find out how to apply here.  The closing date for applications is the 31st January 2023.

We look forward to receiving your application. Good luck and see you at the EAPC World Congress in Rotterdam!


SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

Banner advertising the 18th EAPC World Congress
  • Register now!  Early Bird rate until 1st March 2023.
  • Nominate yourself or a colleague for the EAPC World Congress 2023 Researcher Award!  Find out how to apply here
  • FOLLOW @EAPCvzw #EAPC2023.
  • Sign up to the EAPC blog to hear more about the Congress.
Posted in 18th World Congress, EAPC ACTIVITIES, EAPC Researcher Awards, EAPC World Congresses | Tagged | Leave a comment

Hidden in Plain Sight: the Death of the Queen.

There are not many lives that have been as public as the Queen of the United Kingdom’s, and yet her death at the age of 96 seemed unexpected to some.  Kathryn Mannix, author and retired palliative care doctor, reflects on how, to those experienced in the process of dying, the signs of approaching death were clear…and how this private, yet public, death has been insightful and informative to educate and reassure others.


Dr. Kathryn Mannix
photo credit: Craig Fordham.

Is it permissible to use the death of the Queen as a ‘teachable moment’ about the nature of dying? In the same way that I deliberated deeply before using real people’s stories as the basis of a book explaining the process of dying (1), I thought long and hard before I turned to social media a few days after the Queen’s death.

For people familiar with the trajectory of ordinary human dying, the health of the late Queen Elizabeth II was a real-time chronicle of that process. Ordinary human dying, whether caused by an enervating illness or simply by old age, follows an observable and predictable pattern. Over the last few years, it was apparent that the monarch’s vigour was diminishing. We observed her gradual loss of energy, the change barely perceptible at first and, as so many families realise, easier to discern in retrospect than day-by-day.

In my social media posts, I reviewed those changes in clear, unambiguous and non-sensational language, the same language I have used in conversations with patients and their supporters for decades in palliative care practice. The changes in the Queen’s energy levels were initially only apparent year by year, the rate of change we associate with a life expectancy that is still measurable in years. Later, the changes progressed more quickly: we saw that she was losing weight, walking shorter distances, adopting a walking stick for support, making fewer public appearances. Change was observable month by month, a sign that life expectancy is now measurable in months – perhaps enough months to make a year or so, but no longer an expectation of surviving for several years. Energy levels drop quickly and take longer to re-build: we saw the Queen cancel engagements, delegate duties at short notice, miss even those events that were dear to her heart. Rest, and especially sleep, becomes far more important in restoring energy between activities. We recognise this stage as being close to death.

The Queen’s death illustrated another phenomenon we recognise from our work at the ends of our patients’ lives: the importance of attending to unfinished business, of setting out future hopes, and reconciling differences. For most of our patients these are not work-related affairs (nor affairs of State), but of family. The Queen, perhaps, had both. Despite her failing energy, she held on: perhaps to see in her last Prime Minister, perhaps for family interests known only to her.

Arrangements following the death of a monarch are planned ahead in detail. There were signs that the Queen had also planned the personal details: to be in her most private home, at Balmoral Castle. Not to leave, not even for the appointment of a new Prime Minister. To have her daughter nearby. Not to have intrusive medical treatment (just as a year ago, her husband remained at home in Windsor while he died). And yet, the public and the media appeared surprised at her dying, wishing her ‘a full recovery soon’ even as her family was rushing to her side.

And so, I dared to post on social media about this very public, yet overlooked, dying. The response was extraordinary. The Twitter thread gained two million impressions over the next seven days; its slightly expanded Facebook version has passed one million impressions, with more than four hundred thousand (400k) people reacting or commenting.  It seems that, despite the widely repeated assertion that discussion of death is taboo, when we lift the veil of secrecy and rumour, the public has an appetite to know more and to engage in realistic discussion about dying.

The tone of the response was interesting. Almost all comments were positive. Any negative comments were largely confined to political statements about the Monarchy, without reference to discussion of the Queen’s death, or comments that the Queen’s wealth made dying easier for her, particularly the provision of medical and nursing care at home that can be a challenge for some ordinary citizens to access. It was interesting to note that many responses criticised the mainstream media’s over-reliance on euphemisms like ‘passing’ rather than using clear ‘d-words’ and like dying, death and dead.

Comments about dying and death included many people declaring that this post had helped them to reflect on and understand their own experience with a dying friend or relative; they were interested to understand that this is a universal process and they found it helpful to know more about it. There were responses from individuals who recognised how the process described in the posts was also being experienced by their elderly parents or other people whose health is in decline, and even some who saw that their own health is now following this trajectory and that they were encouraged that the Queen had not seemed to have a lingering death. Public education, my aim in writing, was being achieved.

Ordinary dying. Even at the end of an extra-ordinary life. Thank you, Your Majesty.

References

1. Kathryn Mannix, With The End In Mind, William Collins 2017.

Links and resources

About the author

After a happy 30-year career in palliative medicine, Kathryn Mannix turned her attention to campaigning for better public understanding and discussion of dying. She writes, broadcasts and speaks across the UK and around the world. Her first book, With The End In Mind, became a Sunday Times bestseller and was shortlisted for the Wellcome Book Prize. Kathryn hopes we can de-medicalise dying, giving it back to all of us as an important stage of life. She is a patron of End-of-Life Doula UK.

Twitter: @drkathrynmannix. Instagram: @drkathrynmannix. Facebook: Dr Kathryn Mannix.


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Posted in ADVANCE CARE PLANNING, BEREAVEMENT | Tagged | Leave a comment