Engaging with bereaved relatives: seeking their views about the quality of care provided to their family member in the last days of life

Dr Catriona Mayland is currently undertaking a five-year Yorkshire Cancer Research (YCR) Senior Clinical Research Fellowship with the University of Sheffield, United Kingdom. Here, she talks about assessing the quality of care provided in the last days of life and the valuable role of the bereaved relatives.

Dr Catriona Mayland.

Due to practical and ethical reasons, it is challenging to assess the quality of care provided to dying patients in the last days of their lives. Overcoming challenges, however, is something we thrive on within Palliative Care! It is essential to understand more about this important time. And it’s only by learning more that we can know how to improve care. One way to do this is to involve the patients’ families at an appropriate time after the death – asking what they thought about the care their family member received, either using a questionnaire or by interviewing.

The ‘Care Of the Dying Evaluation’ (CODETM) is a 42-item questionnaire, which asks bereaved relatives about the quality of care their family member received and their own level of support. CODETMwas originally developed in the UK, working alongside patient representatives and bereaved relatives at each step of the way. This has helped ensure that CODETMis asking about the important aspects of care and is clearly and sensitively worded. Within CODETM, there are questions about:

  • the control of pain and other symptoms
  • the care provided by doctors and nurses
  • involvement in decisions and whether important discussions were held e.g. about providing fluids and what to expect when someone is dying
  • emotional and spiritual support
  • information about the person completing the questionnaire and the person who died.

Additionally, there is space for the person completing CODETM to write more about their own personal experience so that they have the opportunity to ‘tell their story’.

Most recently, CODETM was used within the ‘International Care Of the Dying Evaluation’ (i-CODE) research study.

CODE group in Solstrand, Norway. (A list of all members of the project team is published at the end of this post).

What was the i-CODE study?

This research project involved seven European and South American countries – Argentina, Brazil, Germany, Norway, Poland, UK, and Uruguay. Within these countries, CODETM  was used to assess the quality of care in hospitals for dying cancer patients.

What did we do?

First, we undertook translation of the CODETM questionnaire into the different languages. Then, we tested the questionnaire with patient representatives and bereaved relatives to see if CODETMwas culturally suitable for use in the different countries. We did this by using ‘pre-testing methods’ i.e. asking the patient representatives and bereaved relatives whether question items were relevant, sensitively worded and clear in their meaning when translated.

Next, within the participating hospitals, we undertook a survey of the bereaved relatives to patients who had died from cancer. From 1,683 potential participants, more than 900 bereaved relatives participated in the study from 22 different hospitals. Overall, we are pleased to report this showed that the quality of care was good. Specific areas for improvement related to communication and providing better information and support.

Finally, within Argentina and Poland, specific work was undertaken with a focus to improve aspects of care perceived poorly by the bereaved relatives.

Where can you read more about this study?

The first part of our work was published in Palliative Medicine (in March 2019) and is available here. The paper demonstrates how we were able to engage with patients, public representatives and bereaved relatives across the seven different countries to help the development of the CODETM questionnaire.

Links and references

  1. iCODE study webpage – icode7.org
  2. Mayland CR, Lees C, Germain A et al. Caring for those who die at home: the use and validation of ‘Care Of the Dying Evaluation’ (CODE) with bereaved relatives. BMJ Support Palliat Care. 2014 Jun;4(2):167-174. doi: 10.1136/bmjspcare-2013-000596.

The project team
Mayland Catriona Rachel (UK), Sigurdardottir Katrin (Norway), Hansen Marit Irene Tuen (Norway), Leppert Wojciech (Poland), Katarzyna Wolszczak (Poland), Garcia-Yanneo Eduardo (Uruguay), Tripodoro Vilma Adriana (Argentina), Goldraij Gabriel (Argentina), Weber Martin (Germany),  Gerlach Christina (Germany), Zambon Lair (Brazil), Passarini Juliana Nalin (Brazil), Saad Ivete Bredda (Brazil), Ellershaw John (UK), Ting Grace (UK), Haugen Dagny Faksvåg (Norway).

This work was supported by a grant from the ERANet-LAC 2nd Joint Call. Additionally, within the UK, funding was provided by Marie Curie and the Wellcome Trust Public Engagement fund. Dr Catriona R Mayland is currently funded by Yorkshire Cancer Research.

Join us in Palermo for the 11TH EAPC World Research Congress #EAPC2019

Catriona will be presenting In partnership with patients and the public: conducting the international ‘Care Of the Dying Evaluation’ (i-CODE) post-bereavement survey on Thursday 14 May at 14.45-15.00 during the ‘Bereavement session’ which takes place at 14.00 to 15.30 in Napoli (Hall 20). Visit the congress website and download the preliminary programme here.

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How motivational messaging may help patients to stay on course with MyPal

Dr Jonathan Reston and Heather Parker, MyPal team members and behaviour change specialists at Atlantis Healthcare UK, explain how the MyPal Adult study will incorporate personalised motivational messaging to optimise participant engagement.

Jonathan Reston and Heather Parker.

Most of us are now connected to a range of digital services throughout the day thanks to the rise of smartphones. Apps that help us manage our health are becoming increasingly common and can be extremely helpful for everything from tracking exercise and diet to recording symptoms, to providing reminders and activities. As anyone who’s tried using these apps may have found, it’s often easy to record that run, or note those calories, for the first few weeks. But over time, that motivation can slowly wane – and the apps become disused, no longer providing a benefit.

MyPal and motivational messaging

One of the personalised components of the MyPal experience for adult study participants that we have developed is regular motivational messaging delivered via MyPal app notifications. The aim of this messaging is to help keep patients engaged with the regular PRO reporting requirements over their study period.

Designing our approach to encourage better patient engagement

In designing our approach, we first undertook a literature review of psychological and social factors related to engagement with online surveys and digital behaviour change interventions. We found that engagement is predicted by a range of factors, particularly motivation, expectations, emotional distress, need for cognition, self-efficacy to meet the study requirements, and perceived personal relevance – in this case, how the MyPal study is relevant to someone who is managing cancer in a palliative care context.

These factors guided our development of targeted, brief motivational messages that target these factors and reduce potential risk of participant disengagement from the study. We incorporated a number of behaviour change techniques within the series of messages, working collaboratively as a team of health psychology, medical and palliative care experts. Motivation is assessed by asking the patient to indicate how much they agree with the statement: I feel that I want to take responsibility of my own health. Then an example of a message targeted at this ‘motivation’ factor would be:

“When doing what you can to help manage your [insert as appropriate to the individual] it’s important to find a balance between managing your condition, and getting on with enjoying your life. MyPal is there to help make tracking how things are going easier, so you can focus on getting the most out of your days.”

Personalisation: The right messages for the individual

To determine which messages are most relevant to send to each patient, we designed a short survey to assess each of these factors when they first join the study, again after three months, and at the end of the study period to help evaluate change over time. Using the individual’s responses to the survey and prioritising the factors in order of importance, the MyPal platform will send a tailored series of motivational messages that focuses on those of highest importance. If the survey responses change at the three-month follow up point, the order of messages will adjust according to new priorities.

This survey wording, along with the proposed style of messages and intended frequency were pre-tested and refined based on feedback from palliative cancer patients. Participants will receive two messages in each of the first four weeks, and then one message per week through the remainder of the study to help reinforce their key factors and help them maintain motivation in reporting symptoms through their MyPal app.

The MyPal project started in January 2019. The Adult study will be conducted across several clinical sites across Europe: Sweden, Italy, Greece, and the Czech Republic, with first patients targeted to start in May 2020.

MyPal, and digital tools like it, have the potential to improve patient care, but they can only do so as long as patients and healthcare professionals use them. Motivational messaging is one promising approach to promoting that vital engagement.



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From the front line: Palliative care in Bologna during the COVID-19 crisis

Dr Danila Valenti is Medical Director of UO Rete delle Cure Palliative (SC), a palliative care unit in Bologna, northern Italy, and a member of the European Association for Palliative Care (EAPC) Board of Directors. Here, she explains some of the main challenges facing us in health care during the coronavirus crisis and shares advice for others who are approaching a similar situation in their country.

Dr Danila Valenti.

The Local Health Authority of Bologna serves a population of about one million inhabitants with:

  • nine hospitals
  • one university hospital
  • one research institute.

In total there are approximately 3,000 acute beds

There is also:

  • one Palliative Care Network with an Operations Centre
  • one Home Palliative Care Specialist service (30 doctors), (ANT Foundation)
  • three Hospices (10 doctors) (Hospice Seràgnoli Foundation)
  • 14 Early Palliative Care Clinics (outpatient service, ambulatory patients – consulting home care – consulting in nursing homes) nine doctors, 30 nurses.


  • 600 general practitioners
  • 52 nursing homes.

The Italian experience

Following the COVID-19 outbreak in Italy, the main advice to others who are approaching a similar situation is: Rearrange, rearrange, rearrange. Palliative care services in this emergency must be flexible and adapt and change their organisation as needed to guarantee care to those who need it most.

The experience in Italy indicates that one of the main problems during this crisis has been the lack of availability of Personal Protective Equipment (PPE). This has proved to be the most important and limiting factor, not only in palliative care provision but for the whole healthcare system. In advance of escalation of the spread of the virus and of the subsequent increase in admissions of the critically sick, if possible, all countries need to try and convert the activities of manufacturing companies to produce PPE.

For patients who are not, or who appear not to be COVID+, in the absence of sufficient PPE, healthcare workers in palliative home care teams present a risk of transmitting the infection from patient to patient and from house to house.

Caring for patients at home

Due to the risk of harm to patients, home palliative care visits must be limited to those who actually need care. There are two options:

  1. Discuss and share with colleagues the cases of families at home in order to make better decisions about care and to share the weight of these decisions.
  2. Go to the patient’s home with appropriate PPE.

(a)   Discuss and share the cases of patients who are discharged from hospitals (new patients).
(b)   Share simple palliative care symptom management with colleagues (analgesics and other medication and route of administration).
(c)   Produce a Palliative Care Drug Kit to leave in the home. This will enable management of all eventualities and should be supported by telephone. A 24-hour-a-day single phone number for palliative care advice for all patients, healthcare residences and long-term care providers should be available.

For patients who are COVID +
1. Patients hospitalised on COVID wards (which spring up like mushrooms every day) without wasting PPE [provide] enough for consultants (one of the most important and limiting factors).

In clean areas, palliative care teams wearing surgical masks are providing consultation services, with colleagues from the COVID departments on:

(a) treatments for pain and symptom management in particular (dyspnoea and palliative sedation);
(b) advice on how to talk to families to avoid the ‘Desaparecidos’ effect;
(c) ethical decision support;
(d) communication support with patients and family.

  1. 24-hour availability via a single telephone number for colleagues from the dozens of COVID departments (distributed across nine hospitals, one university hospital and one research institute, for a population of about one million inhabitants – Local Health Authority) for a, b, c above.

Telephone communication skills must be used, developed and implemented with:

  • patients and caregivers whom we usually follow in palliative care
  • COVID patients
  • family members of COVID patients (never seen)
  • colleagues needing our help.

Summary of my advice to others

Recommend policies to:
1. Implement manoeuvres to reduce contact with people and between people.

  1. Convert factories for the production of PPE.

For palliative care:

Reduce home visits only to cases that are not manageable by telephone, and always only with the appropriate PPE.

For immediate action:

Doctors and nurses, potentially even carriers, of contact must use surgical masks and always wash/disinfect the hands especially if they are in home care.

For COVID wards:
We bought cell phones and iPads for telephone contact between patients and families to be left on the COVID wards.

We have prepared immediate advice (one-page only sheet) on phrases-to-say/not-to-say strategies and to make these available.

We have prepared immediate advice (one-page only sheet) on morphine use and palliative sedation.

And finally, I can’t emphasise enough my earlier advice: rearrange, rearrange, rearrange. As palliative care workers we must be flexible and adapt and change our organisation as needed so that we can guarantee care to those who need it most.





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Start thinking about palliative care in times of a pandemic: The case of corona …

Professor Dr Christoph Ostgathe is President of the European Association for Palliative Care (EAPC), and a palliative care physician at the Universitätsklinikum Erlangen, Germany. Here he asks if palliative care teams are prepared for what may be their important role in the current crisis and calls for us all to share thoughts and experience on #pallicovid

Prof Dr Christoph Ostgathe.

Currently it seems that there is not a moment when there is not some new information about the worldwide spread of the coronavirus. Many people I talk to share the feeling of being overwhelmed by something they cannot control. The truth of today is the wrong of tomorrow. We are all hoping that the people in power in our countries are well informed about the necessary measures even if they are taken, not taken or taken late. To be honest, this is my impression; not in all cases, in all countries this seems to be the case! Crisis makes good presidents but also reveals the bad ones.

What strikes me currently, is that for the first time in my life and my career, this major public health crisis is not something that has happened to others somewhere in the world, far away, out of sight. No, this is happening right now in front of our eyes, in our countries. Suddenly, I understand many things much better. This is a harsh lesson, how shameful that it has taken a pandemic that impacts on Europe for us to truly understand what has, so often, been a reality in other parts of the world. Making us learn from experience.

For palliative care services, many scenarios in the corona crisis were unimaginable. In times of a pandemic crisis, when scarce resources have to be utilised fully, services that are not directly integrated into the care of the mass influx of corona-infected patients may be reduced in staff or even closed; palliative care may be assessed as a non-essential service.  But palliative care is key. The patients most significantly affected by COVID-19 are the elderly, weak and sick, many of them patients that we would perceive as patients with palliative care needs. Whereas the mortality of positive-tested patients in different countries ranges currently between 0.3-7.1% [1], the coronavirus associated mortality in this frail and elderly population is exponentially higher. The average age of deceased patients positive for COVID-19 is 79.5 years (median 80.5, range 31-103, IQR 74.3-85.9) and 99 per cent have at least one other illness [2]. It is therefore clear that there is no doubt about the value of palliative care as an approach in every clinical setting where corona patients are cared for and for specialised support where more complex multidimensional symptoms/problems occur. And this all in a context of the necessary isolation and hygiene safety measures, hampering in itself social inclusion as one major palliative care paradigm.

What has happened, mainly in northern Italy (and most likely soon in many other countries), is that there are insufficient resources to meet demand. There are high numbers of infected, and very sick people: not enough well rested medical staff, tests, intensive care beds, ventilators, other life sustaining devices. There are, anecdotally, situations in which prioritisation/triage are necessary to decide who will be ventilated, and who will not, who has a chance to live and who must die. Doctors and nurses are and will, not only in northern Italy, be confronted with these clinical, ethical and humanly challenging issues daily in the coming weeks and months. Palliative care cannot solve this alone, but we can be an important support. As palliative care specialists, we are commonly confronted with difficult treatment decisions and can be instrumental in balancing different perspectives, embracing psychological, social and spiritual issues of patients, their families and the staff caring for them.

A further situation that may also arise, as we focus on the pandemic plans, is that whilst the majority of patients with coronavirus will be treated in intensive and intermediate care units, other hospital units such as palliative care units, may be used as overflow for other patients that are not in a palliative care situation. This will require palliative care physicians, nurses and other healthcare professionals to step up and be flexible in their working practices.           

Are we as palliative care teams really prepared for what may be our important role in the crisis?

Are we seen as an important partner within the crisis plans of our services?  During this crisis, in palliative care we need to step up and ensure that we are proactive; that we fully utilise our well-honed skills and competencies and prove that we are an important part of our hospitals and our services crisis plans. It is important that we are able to speak out loud where there is treatable suffering in this crisis. We need to make it clear that in a pandemic like this palliative care is not a luxury, it is a human right!

Share your thoughts and experience on #pallicovid

Be prepared for all of the new challenges we are all likely to face and be flexible as we try to find new answers. We have set up a page on our website and really want you to share your experiences and thoughts. Please visit our page here. Join the conversation at #pallicovid


  1. https://de.statista.com/statistik/daten/studie/1103785/umfrage/mortalitaetsrate-des-coronavirus-nach-laendern/
  2. https://www.epicentro.iss.it/coronavirus/bollettino/Report-COVID-2019_17_marzo-v2.pdf


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Palliative care nursing and research:  A call to arms to conduct nursing research

Continuing our series to celebrate the International Year of the Nurse and Midwife 2020 and the benefits that nursing and midwifery bring to the health of the global population. 

To mark this world first, the European Association for Palliative Care (EAPC) is delighted to publish a special series of 12 monthly posts to honour the work of nurses who work in palliative care and draw attention to several issues that are linked to this crucial workforce. Today, we hear from Catherine WalsheProfessor of Palliative Care at the International Observatory on End of Life Care at Lancaster University, United Kingdom, and Editor-in-Chief of Palliative Medicine, the official research journal of the EAPC.

Professor Catherine Walshe.

Their eyes glaze over. They find it complicated to understand. They don’t know where to find access to relevant information. Yep. I’m talking about research. And more so I’m talking about nurses and research. As a nurse myself, and an educator, I feel able to give myself and my profession a steely gaze and acknowledge that we haven’t done as good a job as possible in helping nurses to understand how important research is, either as producers or consumers of research. Yet, in this International Year of the Nurse and Midwife, we clearly recognise that nursing is critically important to palliative care. Nurses are usually the most common healthcare professionals providing care and they likely have most contact with patients. Can we be assured that the care that they give is research based, where possible, in good evidence? In my view, probably not, as research is, for many nurses, not a core component of their educational preparation or ongoing development. There is little funding or support for them to conduct research, and typical career pathways or job plans don’t encourage research activity. There are notable exceptions such as the National Institute for Health research leader programme and clinical researcher development awards  in my own country, the UK, but I think it fair to say that research remains peripheral to much nursing practice.

And yet, there is great and influential nursing research out there that should guide our nursing practice. Sometimes we likely don’t recognise that it is nursing research or research about nursing practice. So, for example, do you recognise that the core component of the ENABLE trial of early palliative care is nurse coaching? Sometimes it is important that we look at reviews of multiple studies to guide our practice, such as this review that clearly demonstrates that interventions by specialist nurses in palliative care are effective in reducing healthcare resource use such as admissions, re-hospitalization, length of stay and healthcare costs. Research with nurses can tell us the characteristics that contribute to being ‘brilliant’ at providing palliative care through anticipation, commitment, and flexibility. Research can also indicate that perhaps some nurse interventions such as ‘nurse champions’   for palliative care in hospitals may not make a difference, from the point of view of bereaved relatives and we should rethink particular ways of providing care.

Pictured are some of the nurses who have received the prestigious EAPC Researcher Awards awarded by the EAPC and EAPC RN in recent years. Clockwise from top row: Dr Bridget Candy (with Prof Stein Kaasa); Prof Irene Tuffrey Wijne; Dr Julie Kinley (with Dr Ole Råkjaer); Prof Catherine Walshe and Dr Geanna Kurita. Established in 2009, the EAPC Researcher Awards recognise the work of scientists and clinicians in the field of palliative care who have made an outstanding contribution to research and clinical practice. 

What nursing research in palliative care often contributes is a real focus on the personal and interpersonal aspects of care for people who are dying – areas that we know are critical to care provision, and how people experience care.

We need a multi-pronged approach to ensure that such nurse-led and influenced research is common, published, read, and incorporated into practice. This is clearly a complex area, not just within palliative care. However, we can ensure that understanding and using research is at the heart of specialist palliative care nurse preparation. We can create time within palliative care nursing posts for research activity, and ensure that nurses are represented in palliative care research teams. We should help prepare nurses at PhD level so that they can become our nurse research leaders in palliative care for the future.

I started my nursing career in 1983 in a nurse degree programme where research was central to the education we received (thank you Manchester University), and that experience shaped my research career. Let’s make it possible for many more nurses.

Celebrate the International Year of the Nurse and Midwife 2020 on the EAPC blog #nurses2020 #midwives2020 View the series so far here and join us in April when Marius Čiurlionis, Head of a Nursing, Palliative Medicine and Social Care Clinic in Lithuania, will be our guest writer.



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What paediatric palliative care means for families of children with severe neurological impairment


Sophie Ribbers, M.Sc. Psychology, is a research associate at the Pediatric Palliative Care Center, Children’s and Adolescents’ Hospital Datteln, Department of Children’s Pain Therapy and Paediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, and Dr Mandira Reuther is a palliative care physician at the Pediatric Palliative Care Center, Children’s and Adolescents’ Hospital Datteln in Germany. Here, Sophie and Mandira explain the background to their research study and longer article published in the March issue of  ‘Palliative Medicine’ and selected as this month’s ‘Editor’s choice’. (EAPC members can download a free copy from the website).

Dr Mandira Reuther (left) and Sophie Ribbers.

We are honoured that our paper has been selected as ‘Editor’s choice’ in this Special Issue of Palliative Medicine that’s devoted to Paediatric Palliative Care.

Common knowledge exists in our society about palliative care services for adults. People are usually grateful for these services that provide support in difficult situations. But it’s often a completely different story when it comes to palliative care services for children. Many people find the thought of children dying before their parents so disturbing that they want nothing to do with this topic. As a result, paediatric palliative care does not receive nearly as much attention as adult services do. This urgently needs to change!

In our qualitative study, we focused on the largest group of paediatric palliative care patients – children with severe neurological impairment. These patients often fall through the cracks, as most research focuses on children with cancer.1 We aimed to give a voice to these children that cannot speak for themselves by interviewing their parents and professional caregivers, and tried to understand how the provision of palliative care affects them and their families.

We discovered that palliative care services influence the child’s symptoms, the families’ respite and support, normalcy, feeling of security, empowerment and the way they cope with the disease. But just stating these overall outcome domains does not do justice to the meaning they have for families.

We found that the involvement of palliative care services may fundamentally change the child’s health status:

“We agree, my husband and I, […] that if we had not come here, she probably wouldn’t be with us anymore, her health issues would have gotten out of control. […] She has become a whole different child. She is present […] and is also going to school again.”

 Not only the child’s situation, but also the family’s everyday life was fundamentally influenced:

“At this point in our daily life we sometimes even think, “What are we going to do today?“ […] we can spend time as a couple again. I can go shopping without being in a hurry (laughs) and that’s something so normal for other people. And for me it’s so beautiful to have regained that.”

Furthermore, interviews showed that families were pleasantly surprised by their experiences with palliative care services and that the general expectations of those not involved in such services were inaccurate:

“There is so much life here [on the paediatric palliative care unit]. […] normally you expect silence, sorrow […] We experienced quickly that that is not at all the case. When a child dies, certainly that’s different, but there is so much life here, so much laughter, dancing, singing.”

Clinicians and researchers have fun at EAPC congresses – Sophie and Mandira pictured at the photo booth of the 16th EAPC World Congress in Berlin…

Overall, paediatric palliative care is certainly a sensitive and at times devastating topic but it also brings with it so much joy, life and laughter. Providing high-quality paediatric palliative care may not change the life of as many (palliative diagnoses being less common in children than adults) but for those affected, it may change everything. We are honoured to be able to contribute to advancing this field a bit further and are delighted that our paper has been selected as ‘Editor’s choice’.

We are currently preparing a manuscript describing the development and validation of an outcome tool that is based on the outcome domains identified in this study. Thus, we hope to provide a tool that contributes to the provision of high-quality paediatric palliative care.

  1. Namisango E, Bristowe K, Allsop MJ, et al. Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. The Patient-Patient-Centered Outcomes Research. 2018: 1-41.

This post relates to the longer article,Core Outcome Domains of Pediatric Palliative Care for Children with Severe Neurological Impairment and Their Families: A Qualitative Interview Study” by Sophie Ribbers, Julia Wager, Almut Hartenstein-Pinter, Boris Zernikow and Mandira Reuther published in Palliative Medicine 202034 (3). Article first published online 4 November 2019: https://doi.org/10.1177/0269216319885818. Issue published: March 2020.


If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

DID YOU KNOW…?  There’s an entire day devoted to Research in Paediatric Palliative Care at the 11th EAPC World Research Congress
Come along to the Children’s Palliative Care Seminar on Thursday 15 May in Palermo. Download the programme here.  Attendance is free for those registered for the main EAPC Research Congress. Please visit the congress website here.

Posted in CHILDREN'S PALLIATIVE CARE, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH | Leave a comment

St Giles Hospice works in partnership to support dementia care in care homes

St Giles Hospice, in the West Midlands of England, provides palliative care for people with advanced cancer, motor neurone disease, and other terminal illnesses. With a long tradition of working in partnership with other like-minded organisations to provide supportive care, community engagement activities and education, the hospice is now gaining a reputation for its collaborative work in dementia care. Last week we published a post from St Giles Hospice, CEO, Dr Emma Hodges.

This week, Emily Pardoe-Billings, formerly Dementia Advisor for St Giles Hospice, describes her experience of working with care homes in Walsall to provide a partnership support service.

Left to right: Pat Roberts (Pathways 4 Life), Emily Pardoe-Billings (St Giles Hospice) receiving the 2018 Great People Award for their work.

I joined the Care Improvement and End of Life service in 2016. The service was originally commissioned as a pilot project in 2015 with funding from Walsall Clinical Commissioning Group (the National Health Service body responsible for the planning and commissioning of health care services in our local area) and Walsall Council. St Giles, with their experience in end-of-life care, partnered with Pathways 4 Life (part of the social care organisation, Age Matters – Accord Care and Support, focusing on dementia) in order to meet the challenge of people with dementia dying in hospital.

Walsall has historically been above the national average in respect of the number of people with dementia who are dying in hospital, as illustrated by the graphs below.

Figure 1 – Place of death – care home.

To reduce unnecessary hospital admissions from care homes, St Giles and Pathways 4 Life each provide a Dementia Support Worker who works closely with the care homes to improve their understanding of dementia through observations and tailored training.

Figure 2 Place of death – hospital.

At times, the role has been incredibly difficult. Care homes face many challenges of their own, such as staffing levels which means training is cancelled at short notice. At other times, the manager leaves and you have to start over from the beginning to rebuild that relationship. And there has been a degree of snobbery that because we are not nurses our thoughts are sometimesdismissed.

Care homes are under scrutiny from the public eye and from Care Quality Commission – CQC – (the independent regulator of all health and social care services in England).Often, we are initially greeted with a low level of wariness when we first reach out. Spending time simply observing life in a home grants you a privileged and unique insight into their world: a glimpse of their pressures, the beauty of small interaction between a resident and a carer. Investing this time allows you to truly understand the home holistically, thus we can tailor the support to meet their needs. We are not there to make them feel inadequate, but to provide a listening ear and gentle direction. The staff know we have walked in their shoes and we appreciate their struggles. The reward for this is the trust the staff place in us.

One care home had been in difficulty for some time – between our support and the hard work from the staff, they were able to turn themselves around. The manager said the true turning point for them was our involvement by improving the confidence of the staff to work with the residents. For me, that is priceless.

Partnership working has been the life force of this service. No one service is the expert on dementia. Everyone has something to bring to the table. We have strived for a two-way relationship with the homes, problem-solving together. We are fortunate to have a passionate commissioner who is always willing to share his knowledge. And I could not do my job without my wonderful counterpart from Pathways 4 Life. Together, we can achieve heights that we would not surpass alone. It has been an honour to learn from each other as we continuously develop our own skills. I hope to see more examples of partnership working as we look to the future of dementia support.






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