ICU and Palliative Care: Poles Apart or a Mindset in Common?

For the first in our new Palliative Care and Intensive Care series, Dr Sophia Henderson, Post CCT (Post Certificate of Completion of Training) Fellow in Intensive Care & Palliative Care, reflects on how historically referring ICU patients to palliative care was seen as a failure and why change is afoot.


The intensive care mindset I grew up in went something like this… ‘People should be sick enough to need intensive care, but not so sick or frail that they will not survive it– and if they’re dying, they need palliative care, not intensive care’.

Quite the subset.

As the walls between different specialties fall, we are now much better at recognising the million shades of grey in which we function in medicine. We have, of course, always done our own versions of palliative and end-of-life care in the intensive care unit (ICU). It’s just that it was either classed as ‘failure’ (the devastatingly sick patient who had continued to deteriorate despite our best efforts) or inevitable and everyone rather lost interest… ‘Bed 12 is palliative – we’ll move on to the next…’.

A few years ago, I was involved in the withdrawal of life sustaining therapy from a gentleman in his sixties. He had had surgery two weeks previously, made it to the ward a few days later and had then sadly experienced a catastrophic complication. There was an attempt at rescue surgery but after ten days or so in the ICU, all signs were not good. His family were understandably devastated but clear that he would not tolerate a quality of life less than his usual and would hate to be on ICU. Together we planned the process of how and when mechanical ventilation would be withdrawn safely and with compassion. We ensured that there was opportunity for significant others to come in and visit him, and also that symptomatic medicines would be up and running to avoid any pain or distress.

Although as a profession we are much better at this than of old, I still sensed a subtle but noticeable shift in mindset once the plan for withdrawal of life sustaining therapy was communicated to the ICU team. Indeed, it transpired later that less than half an hour after this decision was made, the question was asked ‘Could the patient be doubled up?’ (decreasing the standard ICU nursing ratio so that the nurse would also be looking after another patient). I do, of course, appreciate that this is sometimes necessary, but I can only tell you that this was one of those rare, unnervingly quiet days on ICU and we certainly were not strapped for staff.

All this got me thinking… how do we make the perceived value of excellent end-of-life care equal to that of the neat and tidily charted, all-pumps-in-a-row care of the highly dependent ICU patient? For the intensive care entrenched, there is something so entirely different about removing extraneous equipment, turning off unnecessary monitoring and forsaking the hallowed ICU chart. I feel sometimes that these actions appear to disconnect us from our patient, as if some imaginary ICU umbilical cord has somehow been severed.

We need help to shift gears at this point, whilst remembering that the patient will still benefit hugely from those neat box-ticking tendencies to which we are so prone. Translated, that penchant for attention to detail will ensure that the patient is optimally sedated, analgesed and positioned, and that we still notice the myriad other small-but-important things; here too the marginal gain wins the day. Knowing that this end-of-life experience was as good as it could be is hugely beneficial for the patient and their relatives – and for staff.

We should also fight the urge that we are necessarily unwelcome at the bedspace by families. This is almost exclusively a frightening and out-of-control experience for them and I feel we should not hide behind ‘giving the family space’ and make sure we are present enough for them if they wish it, as well as to assess and amend any care needs. All a difficult balance I agree. But we need a culture change to validate that the stakes are just as high as if this were lifesaving medicine, not least because this end-of-life experience is likely to live with the family forever.

I feel optimistic about the future of collaboration between intensive care and palliative care. We have much to learn from each other and there seems to be a growing momentum in the field. I was excited to find a session on death, dying and communication front and centre at the recent Intensive Care Society’s ‘State of the Art’ ICU conference in Belfast. There are a small number of intensive care training programmes incorporating palliative care beginning to appear in the UK. There is also an increasing number of collaborative projects involving the two specialities, including the recently formed research network ‘EPCIN’ (End of life and Palliative Care in ICU Network).

I’m hugely glad the winds are changing. It is more than possible to align the intensivist mindset with that of palliative care – we just need to work on valuing both equivalently. A patient’s end of life care needs just as much input as when the goal was curative; it’s just different input. Let our attention to detail persist, even when the bigger picture of a life ending is centre stage.

Links and resources

To find out more about End of life and Palliative Care in ICU Network (EPCIN) click here.

About the author

Dr. Sophia Henderson is a Post CCT Fellow in ICU & Palliative Care at the Royal United Hospitals, Bath in the United Kingdom. Twitter: @sophjhenderson.


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

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‘Healing Hearts and Communities’: World Hospice and Palliative Care Day 2022.

World Hospice and Palliative Care Day (WHPCD) was established in 2005 and has since become one of palliative care’s most significant global days. Each year a different theme is chosen to emphasise an aspect of palliative care that people may not know about or that is relevant to current events. We’re delighted to be joined today by Dr Stephen R Connor, PhD, Executive Director Worldwide Hospice Palliative Care Alliance (WHPCA), to tell us more about WHPCD 2022 and its call to action.


Dr Stephen R Connor

World Hospice and Palliative Care Day occurs every second Saturday in October each year. A unified day of action to celebrate and support hospice and palliative care around the world. The first WHPCD was in 2005 in conjunction with Voices for Hospice. WHPCA manages WHPCD for the international palliative care community. For 2022 the theme is ‘Healing Hearts and Communities’, recognising that the experience of grief and the need to heal unites humans worldwide, and that working together to build compassionate community support is essential to the quality of life that all people deserve. The global COVID-19 pandemic and conflicts around the world demonstrate the need for a greater recognition of the importance of palliative care as well as the essential role of Compassionate Communities to support the bereaved worldwide. The Compassionate Community movement is a growing initiative to develop communities that want to ensure that those with serious illness, the dying, and bereaved receive the support they need.

Each year over sixty million people die on our planet. Recent research found that an average of nine people grieve for each death, which is more than five hundred million bereaved annually. For each death an average of sixteen people attend a funeral or memorial: that’s over one billion people each year attending a service. The scale of grieving worldwide is enormous, yet societies tend to marginalise the bereaved, rather than provide extra layers of support.

WHPCA, representing over four hundred palliative care organisations in over one hundred countries, issues the following call for action:

1) All governments to commit to developing national grief strategies to identify gaps, best practices, and priorities by 2030.

2) National grief strategies should include evidence-based public health measures, best practices for organisations and healthcare providers, and community consultation.

3) Serious illness, grief and bereavement are costly, resulting in bankruptcy for many around the world. The average cost for a funeral in America is over $12,700. Sustainable funding for a public health approach to support the wide-ranging consequences of bereavement, including mental health support, is essential to the wellbeing of people and makes good economic sense.

4) Grief and bereavement affect everyone, yet many people aren’t comfortable with these conversations. National strategies must include approaches such as public awareness campaigns; use of advance care planning; an annual national day in memory of those who have died; healthcare provider education on grieving (to increase understanding of grief) and healthy coping strategies to build the capacity of individuals and communities to support the grieving.

Hospice and palliative care programmes are the only health care provider that routinely provides care and support for bereaved families following a death. Please join the international palliative care community in holding an event this year on or around WHPCD that celebrates hospice and palliative care and register your event here. We know there is much to be done to ‘heal hearts and communities’ after bereavement, but your events to showcase what is happening locally and why such care and support is important, can make a real difference.

Links and resources

About the author

Dr Stephen R Connor, PhD, is Executive Director Worldwide Hospice Palliative Care Alliance (WHPCA). He has worked in the hospice/palliative care movement since 1975 including 10 years as vice-president of the National Hospice and Palliative Care Organization (US). In addition to being a hospice and association executive, he is a health services researcher, educator, advocate, and psychotherapist, licensed as a clinical psychologist. Twitter @srconnor.


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Posted in Bereavement, PATIENT & FAMILY CARE, World Hospice & Palliative Care Day | Tagged | Leave a comment

‘I’m afraid I have some bad news…’

While not a phrase anyone would want to hear from their healthcare professional, Elise Lang and colleagues suggest there are ‘good ways’ to share such news and to discuss prognosis in a way that is supportive to those affected by cancer and their relatives. For today’s blog, Elise, Gemma Eccles and Eleri Girt explain why doing this well matters.


Eleri:

 ‘A total shock, completely unexpected and something that happened to others. I have worked in cancer care for most of my working life but now I wasn’t me ‘the healthcare professional’, I was the same as everyone else who had sat in that seat hearing those words and then not hearing anything else. I couldn’t think of any questions to ask.

A nurse by background and having responsibility for patient engagement and experience in the Wales Cancer Network since 2004, I was diagnosed with breast cancer in 2019. Having also supported my mum, as her primary carer, during her brief battle with brain cancer, I unintentionally acquired a three pronged experience to communication around cancer diagnosis and prognosis.

Accompanying Mum to her diagnostic and treatment discussion appointments was heart-breaking. Mum was told with compassion about her diagnosis BUT the discussion about treatment was the polar opposite: a small poky room with computer screen facing the door with a scan picture showing the tumour up on the screen.  The Consultant was abrupt and offered her no treatment options, nor did they refer her to palliative care. There was no care, no compassion, no support, no information – just instructions to make an appointment in six months’ time (she died within two months).

My diagnosis was through breast screening. A letter recalled me for a repeat mammogram and my husband attended with me, sitting blissfully unaware in the waiting room of what was going on for over three hours. I asked whether anyone had been to speak to him. The surgeon’s attitude seemed blasé; the consultant radiologist was not: she showed me the mammogram images, explained the reason for the three biopsies and explained the extreme likelihood of surgery; she put me at ease. I returned a week later for the results. I was called through – I had to ask could my husband come with me. I heard ‘cancer’, ‘invasive and ‘a second cancer’- I remember little else.’

We can do better

In 2021, as a multidisciplinary primary care team working to improve care for people living with cancer in Wales, we were tasked with exploring communication around cancer prognosis, and in particular to consider the words used.  We held a series of workshops with those affected by cancer, like Eleri, and with clinicians from across the country – we heard difficult and inspiring stories of conversations around cancer diagnosis, and prognosis being done well, and poorly. It quickly became apparent that needs were different; for clinicians, accurate and consistent language was felt to be crucial when communicating with colleagues.  However, when speaking to those affected by cancer, it became clear that their needs were much greater than just the right language being used for them.

“Something that struck me was that many people didn’t ‘see’ me. It did feel like the old cliché of being on a conveyor belt and that I was just ‘breast lumps’ that needed removing and then moving along. But I’m not, I’m me: a wife, a mum, a grandma, a sister, a friend, a colleague, who loves history, sewing, chocolate cake and The Proclaimers 😊”

Together with the people attending the workshops, and supported by Macmillan and the Wales Cancer Network, we worked to distil both the positive and negative experiences our attendees had reported into a simple but powerful set of guidance. In March 2022, we launched the Macmillan Ten Top Tips for Sharing Cancer Prognosis.

The Ten Top Tips document is a common-sense approach, there is unlikely to be anything surprising in the advice.  However, our workshop experiences reinforce that when these conversations are done well, they really do enhance patient experience but perhaps more importantly, when they are not done well, there can be increased uncertainty and unnecessary distress at an already difficult time.  As Eleri says,

‘I absolutely support the Top Ten Tips. It shouldn’t be for the patient to know what to do, or what to ask, or how to ‘be’ when they are having that life changing conversation (and it absolutely is) around the fact they have cancer. Whether or not the cancer is completely treatable, or not, the word has been used and life will never be the same again.’

The people affected by cancer who kindly gave their time to support this work have made an impact on our everyday clinical practice and for that we are very grateful, and hope that in reading this, it may impact on yours too.

Links and resources

  • Click here for the Macmillan Ten Top Tips for Sharing Cancer Prognosis.
  • There is a bite-size video explaining this work, useful for training as well as for information. 

About the authors

Eleri Girt is the Patient Engagement and Experience Lead with the Wales Cancer Network and was treated for breast cancer in 2019, following a diagnosis through screening.

Dr Elise Lang is a General Practitioner (GP) partner in Cardiff and interim Primary care lead for Wales cancer network, GP lead for Velindre Cancer Centre and Macmillan Clinical Advisor for Wales. Twitter: @DrEliseLang.

Dr Gemma Eccles is a GP currently working as the Primary Care Clinical Lead for Cancer for Swansea Bay University Health Board. Twitter: @EcclesGemma.


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

  • Submit your abstract now! Closing date 15th October 2022 for abstract submissions. Find out more here or submit your Abstract here.
  • FOLLOW @EAPCvzw #EAPC2023.
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Love, life, death, and a price. Worth a Ventafridda Award?

Vittorio Ventafridda was a palliative care pioneer and in 2007, the Maruzza Foundation established an award in his honour. It is given each year to a clinician who has demonstrated outstanding initiative and enterprise in the paediatric palliative care sector and this year it was awarded to Natasha Pedersen. Natasha, among many other achievements, is the founder and Chief Executive of the Norwegian Association for Children’s Palliative Care. For today’s blog, Natasha tells us about her work and what this award means to her.


 Elvira Silvia Lefebvre D’Ovidio, Maruzza Foundation’s President, presenting Natasha Pedersen with the 2022 Ventafridda Award.

In May 2022, I received the Ventafridda Award. It is hard to put into words what this means to me on a personal level. But I hope it will also mean something for the visibility of our continued work in Norway. I want to underline this, especially since Norway is an incredibly wealthy nation that takes pride in our health system. That’s why we really mean it when we allow ourselves to say that we are building history one stone at the time. On a personal level, it is extremely hard to describe what this work means to me, since Norway’s very first children’s hospice and palliative care centre is named after my beloved daughter Andrea, who died thirteen years ago.

This award is marking a milestone as we are slowly, but surely, approaching the realisation of a legacy of such magnitude. It makes me proud to be able to say that Andrea’s House will be ready for our first guests by the beginning of 2023. The list of people that I have met on this road and who have helped and inspired me is far greater in length. I would like to mention Ann Amstrong at Children’s Hospice International; Joan Marston, Sue Boucher, and Julia Downing from the  International Children’s Palliative Care Network (ICPCN); Julie Ling, Chief Executive, Christoph Ostgathe, President, and the Children’s and Young People’s Taskforce team at EAPC; Katrina McNamara; Lizzie and the entire staff in Together for Short Lives; Dr Richard Hain, Sue Fowler Kerry and Dr Ross Drake. To the people at Regenbogenland for inspiration and learnings. To Sabrina Kraft, to Anthony Foskett, Anja Hermann, and friends at Kinderhospiz Sterntaler for their motivation and guidance.  And of course, a big thank to The Maruzza Foundation with Silvia and her amazing colleagues, Ken Ross and Dianne Grey. They all, along with so many of our inspiring and international colleagues, have purposefully contributed to our work with knowledge and true passion. Their burning desire to share and exchange experiences has served as inspiration, motivation, and guidance. For that, I am profoundly grateful and blessed.  

The progress and initiatives we have seen in other parts of the world has meant everything for children’s palliative care in Norway and the work at The Norwegian Association for Children’s Palliative Care. Looking back at it all, I have learned that it is a heart-warming reminder of the importance of knowledge exchange.  Without the sharing of knowledge, nothing of what we have achieved would have been possible.  

It makes me proud to see that the number of people who want to join our work and our journey grows every day, regardless of whether they specialise in medical work, volunteering, construction, organisational work or simply express their wish to contribute in any way possible. 

This road we have walked together has been filled with demanding work, with battles, pain and tears and with what feels like an infinite amount of work over the years. At the same time, you all have contributed to making the road easier to walk.  

There are those who have contributed to my journey on an even deeper level than all others, and who deserve a special place. My daughter, Bella. A true rock in my life who has been through it all along by my side. And whose understanding of our cause is deeper than most others. As she put it herself:  

‘My life as a sibling would be completely different if there existed a children’s hospice at that time.’ 

Bella, who despite her youthful age, has experienced so many of the darker sides of life, and yet manages to be the light in so many other people’s lives. And who has always kept fate and positivity, even when ‘Mom just has to work for just a little bit longer’, because she knows the meaning and importance of our work better than most.

The personal pain I have felt along the journey can never be made up for by any award, but the award strongly stands for what the pain has led too. It was painful both to Isabell and me to see that Andrea did not receive the care we would have wished for from our medical system in Norway. Her death was the start of this entire journey for us. It was the spark of what has since become a big fire. We have worked tirelessly ever since to make sure that this pain, and everything we learned from it, at some point could turn into something good for others. Both of my two daughters, Andrea and Isabell, have been my guiding lights all along the road, and I pray that I will always have them with me to guide me further on. Dying children are and should always be our true teachers – and sharing is also about caring.

Natasha Pedersen, and her daughter Isabell, at the ceremony to mark the foundation of Andrea’s House Hospice.

Links and resources

About the author

Natasha Kjærstad Pedersen is a theologian and health worker and has completed a whole range of international courses and e-learning in palliative care. She is the founder and Chief Executive of the Norwegian Association for Children’s Palliative Care and is a member of the EAPC Board of Directors. Natasha is referred to as the ‘Mother of children’s palliative care’ in Norway.


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

  • Submit your abstract now! Closing date 15th October 2022 for abstract submissions. Find out more here or submit your Abstract here.
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  • Sign up to the EAPC blog to hear more about the Congress.

Posted in BEREAVEMENT, CHILDREN'S PALLIATIVE CARE, INTERVIEWS & TRIBUTES, PATIENT & FAMILY CARE | Tagged | Leave a comment

Ageing well and dying well in the right place: What Compassionate Communities can learn from Caring Neighbourhoods.

For the last in our Palliative Care and Public Health blog series, Liesbeth De Donder gives key learning points for palliative care from her research into Caring Neighbourhoods and why we cannot talk about ageing in place (the ability of older adults to live in their homes and communities) without talking about dying in place.


I am no expert in palliative or end-of-life Care, nor on public health, nor on medicine. I am an Adult Educational Scientist with a passion for social and environmental gerontology (which is the scientific study of old age and the process of ageing). A lot of my work has centred around the issue of ‘ageing well in the right place’. I only learnt about Compassionate Communities three years ago, but immediately felt this could be a missing link in our work on Caring Neighbourhoods.

Let me first start with explaining the importance of Caring Neighbourhoods in Flanders and Brussels, by telling you about its history. In 2013, our government launched a tender for six innovative ‘Care Living Labs’ which needed to develop new care concepts, processes and products to help with ageing well in the right place for individuals and to test them in practice over three years. In the Active Caring Neighbourhood project, based in Brussels and Antwerp, we explored how we could create or facilitate an environment to support frail older people to age in place of their choice (1, 2). After this project ended in 2016, the concept of Caring Neighbourhoods had gained momentum and in 2018, a large charity foundation in Belgium decided to support its further development by supporting 35 Caring Neighbourhoods (3). In 2022 the Flemish Minister of Welfare and Public health made Caring Neighbourhoods one of his priorities and subsidised the development, implementation and evaluation of 133 of them.

Since the beginning we have been evaluating the first Active Caring Neighbourhood project, as well as the second 35 neighbourhoods, and many lessons can be drawn. But I would like to take out three in particular, which may interest you:

1. Caring Neighbourhoods build on the triangle of care, housing and social relationships. A neighbourhood that is supportive of ageing well in place not only pays attention to professional and informal care and help, but also issues linked to social relationships such as civic engagement; community cohesion; safety; ‘small talk’ and light, informal conversations; ambiance and pleasant atmosphere in the neighbourhood, and combating stereotypes attached to frailty and care stigma. In addition, housing and physical neighbourhood infrastructure are essential but often overlooked factors. Good care, starts with a house adapted to an individual’s needs, in an adapted, age-friendly community environment with, for example, attention for mobility and accessible sidewalks.

2. Caring Neighbourhoods are more than merely ‘neighbourhoods where neighbours care for each other’ as a means of compensating for ill-working governmental care provision. In Caring Neighbourhoods well-functioning care organisations operate and collaborate with each other towards an integrated community care approach. Social security remains the necessary institutional instrument to combat lack of access to quality care. No warm solidarity (i.e. engagement of citizens for their community) without cold solidarity (i.e. structural, institutional basis).

3. Our research underlines the importance of continuous investment in local care networks, combining formal primary and specialised care, informal and family care, neighbourhood support and self-care. A Caring Neighbourhood cannot simply be launched and then expected to become self-sustaining. The model should not be exploited or misused to justify budget cuts and savings in the health and care sector. In contrast, if such models of care indeed save societal costs, these should be reinvested in the organisational support available in the Caring Neighbourhood to protect and support caregivers, for instance, from being overburdened as well as supporting existing initiatives and networks which enhance a Caring Neighbourhood and community.

The other way around of course, Caring Neighbourhoods can also learn a lot from the Compassionate Communities movement. European policymakers are nowadays very much focused on keeping people out of residential care. But that will also require that they need to think more about end-of-life in the community, grieving as well as death. We cannot talk about ageing well in place, without talking about dying well in place.

References

  1. De Donder, L. et al. (2017). Zorginnovatie in Vlaamse proeftuinen: Onderzoek naar Actief Zorgzame Buurten in Brussel en Antwerpen. Brussel: Kenniscentrum Woonzorg Brussel. (in Dutch)
  2. Smetcoren, A.S et al. (2018). Towards an Active Caring Community in Brussels. In T. Buffel, S. Handles, C. Phillipson (Eds.) Age- friendly communities: A Global Perspective (pp.97-118). Bristol: Policy Press.
  3. De Donder, L. et al. (2021). Lokaal Samenwerken in Zorgzame Buurten”. Brussel: KBS/ Fonds Dr. Daniël De Coninck. (in Dutch)

Links and resources

  • Find out more about the EAPC Reference Group on Public Health and Palliative Care.
  • Read more about Public Health and Palliative Care on the EAPC blog.
  • The End-Of-Life Care research group is hosting the 7th international Public Health Palliative Care International conference ‘Democratizing caring, dying and grieving: participation, action, understanding and evaluation’. Bruges, Belgium, 20 – 23 September 2022. Find out more here.
  • The End-Of-Life Care research group Public Health & Palliative Care Research Summer School is taking place on 14 to 17 September 2022, in Ghent, Belgium.

About the author

Liesbeth De Donder is Professor of Adult Educational Sciences and together with Prof. Luc Deliens is Head of the Centre of Expertise on Compassionate Communities at the Vrije Universiteit Brussel. This interdisciplinary centre brings together eight different research groups, committed to research the development, implementation and evaluation of Compassionate Communities. Twitter: @liesbeth_donder. Orcid: 0000-0003-4999-5902.


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

Banner advertising the 18th EAPC World Congress
  • Submit your abstract now! Closing date 15th October 2022 for abstract submissions. Find out more here or submit your Abstract here.
  • FOLLOW @EAPCvzw #EAPC2023.
  • Sign up to the EAPC blog to hear more about the Congress.
Posted in PATIENT & FAMILY CARE, public health palliative care | Tagged | Leave a comment