Has the COVID-19 pandemic brought Intensive Care and Palliative Care closer together?

We are delighted to introduce our new Palliative Care and Intensive Care blog series.  For the first article in this series, Martin Neukirchen and colleagues tell us about combined initiatives established during the pandemic that have proved to have significant staff, patient and relative benefit.     


Priv. Doz. Dr. med. Martin Neukirchen.

At first sight, the two disciplines of intensive care and palliative care differ substantially in their goals. Intensive care is commonly associated with high-tech medicine to save lives, while palliative care alleviates symptom burden to maintain quality of life. However, both disciplines care for the seriously ill, often dying, patients and their relatives. Both have to deal with the fact that curation can sometimes no longer be achieved. In addition, intensive care, even more than palliative care, often faces the great challenge of treating patients with large prognostic uncertainty. Keeping hope alive for patients, and their often highly stressed relatives, and motivate them to fight against serious conditions on the one hand, while not raising unjustified hopes on the other hand remains deeply challenging.

Models for implementing palliative care structures in Intensive Care Units (ICUs) have been developed. However, they are implemented to a greater or lesser extent within Europe. Difficulties mainly exist in identifying ICU patients who could benefit from palliative care. For this purpose, trigger factors have been developed, that can be used as screening methods. These are factors which are commonly associated with patients who may have a life-threatening illness and so may have palliative care needs or need treatment to reduce symptom burden. A closer look at those trigger factors shows that they’re mainly prognostic factors, so depending on life expectancy. They include, for example, older age and comorbidities, history of cardiac arrest or stage IV tumors. However, trigger factors must encompass more than prognosis to be a meaningful tool to be used to determine patients’ outcomes and needs.  For example, they should include nurses’ perspective as an integral part of interprofessional cooperation. As a rule of thumb, intensive care nurses spend more time at the patient’s bed and are therefore confronted with the patient`s needs and symptom burden in an even more unfiltered and profound way. That is why they may identify other trigger factors such as different symptoms burden but also a lack of honest communication, inconsistent decisions and the burden on relatives. With additional support of specialised palliative care teams, communication about realistic therapy goals with patients and relatives can then be improved.

Collaboration between intensive care and palliative care already works quite well in some places. During the pandemic, intensive care teams were extensively confronted with patients and clinical settings that had rarely occurred to this extent before. Awake patients on Extra Corporeal Membrane Oxygenation (ECMO) with extremely poor prognosis for ECMO weaning may serve as a striking example. These patients and their loved ones suffered from symptoms on all four levels (physical, psychological, social and spiritual). Visits were restricted for relatives and friends but nevertheless patients were often awake and in high need of communication. Consequently, substantial moral distress arose among members of intensive care teams, and in some cases, this also contributed to the involvement of palliative care teams. At University Hospital Düsseldorf, to address high levels of moral distress, we offered multi-professional communication seminars to our colleagues in intensive care wards. With the help of these seminars, confidence was built and thus helped relieve emotional pressure and distress.

In addition, solutions were sought and found for particularly stressful situations, for example, patients suffering from loneliness due to visiting restrictions. In this context, digitally driven communication via tablets, even during the process of dying, was established and is now a well-known tool to support patients and their relatives who are not able to visit the ICU. These examples show the benefits of cooperation between intensive care and palliative care, getting to know each other and working out common patient goals.  To facilitate this collaboration, both the benefits and implementation could be topics of discussion early in medical training and education, perhaps even in shared teaching programs. On a daily routine basis, this collaboration can be enhanced through regular interactions. It seems crucial to maintain this common effort in the future for the good of patients, relatives and healthcare professionals alike.

Links and resources

About the authors

Priv. Doz. Dr. med. Martin Neukirchen is Head of the Department of Palliative Care, University Hospital Duesseldorf, Heinrich-Heine University, Germany. His research interests include co-operation between intensive and palliative care.  Orchid: 0000-0002-2287-7896.

Manuela Schallenburger, MSc is a palliative care nurse, research assistant and Lead Co-ordinator of  palliative care teaching for medical students at the Department of Palliative Care, University Hospital Duesseldorf, Heinrich-Heine University. Her research interests include trigger factors in intensive care from a nurses‘ perspective, interprofessional teamwork, learning and education. Orcid: 0000-0002-3364-6137.

Dr. med.  Jacqueline Schwartz is Co-Head of the Department of Palliative Care, University Hospital Düsseldorf, Heinrich-Heine University, Germany.  Her research interests include trigger factors for palliative care in oncology and intensive care.  Orcid: 0000-0002-0945-1292.

Dr. med. Yan-Nicolas Batzler is an urologist and palliative care physician at the Department of Palliative Care, University Hospital Duesseldorf, Heinrich-Heine University. His research interests are the voluntary stopping of eating and drinking and ethics in palliative medicine. Orcid: 0000-0002-4436-6448.

Dr. med. Stefan Meier, D.E.A.A. is a Consultant at the Department of Anesthesia and Critical Care, University Hospital Düsseldorf, Heinrich-Heine University, Germany. His research interests are integration of palliative care in intensive care, and the appropriateness of intensive care.  Orcid:  0000-0001-5924-0357.


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Does early palliative home care for hematologic patients save money?

We hope you enjoyed the EAPC 12th World Research Congress!  All congress content is available online for delegates until 30th September 2022. There were many highlights from #EAPC2022 but we particularly enjoyed the award presentations, which included the Journal of Palliative Medicine’s Paper of the Year award. The winners were Claudio Cartoni and colleagues for their paper about whether early, home based palliative care can be cost effective.


Claudio Cartoni speaking into a microphone
Claudio Cartoni

People with blood cancer have complex and specific needs,often requiring care from a range of different healthcare professionals.This can be impractical and overwhelming for both people undergoing treatment and their loved ones, representing a considerable psychological and emotional burden. Frequent hospital visits for different kinds of outpatient treatment can be highly disruptive to a person’s life due to factors such as long travel times, the cost of travel and being isolated from family. Therefore, a specific programme of home-based provision of early palliative care was developed in order to respond to the care problems suffered by some categories of frail patients with hematological diseases. The programme, run by a specialist hematological team with skills in basic palliative care, aims to improve the quality of life of patients and their carers, and to reduce the number and costs of inappropriate hospitalisation. Its key aspects include controlling symptoms, psychosocial care, a personalised management plan capable of maximising patients’ quality of life and the provision of co-ordinated services, especially at home but also in the hospital and in day care units. This type of assistance is provided by multidisciplinary teams of physicians, nurses, psychologists, social workers and a physiotherapist. Direct contact with the hospital blood bank assures the availability of blood products. An infectious disease specialist, a heart specialist, a neurologist and an orthopedic of the hospital are also available for consultation. The home service initially assisted patients with chronic or terminal illnesses but it was later also employed for the supportive care of patients discharged by the hospital wards after chemotherapy or hematopoietic stem cell transplantation programmes.

Although the main reason for this programme is to assist patients and their families, the financial constraints conditioning the national health systems required an accurate evaluation of the economic advantage of this home-based solution compared with the consolidated services offered hospital-based setting. Therefore, we designed a real-life, non-randomised comparative study in order to assess costs, use of resources and clinical outcomes between an early palliative home care programme versus standard hospital care for patients with an advanced illness (treated with life-prolonging therapies) or those with terminal phase, who were receiving only supportive care. The allocation of patients to either home or hospital care was based on pragmatic considerations such as caregiver availability, distance from the hospital and patient preference. Our analysis focused on resources use, events requiring blood unit transfusions or parenteral therapy, patient-reported symptom burden, mean weekly cost of care, cost-minimisation difference and incremental cost-effectiveness ratio (ICER).

Of 119 patients enrolled in the study, 59 patients cared at home were more debilitated and had a shorter survival than the 60 in hospital group (p = 0.001). Nevertheless, symptom burden was similar in both groups. At home the mean weekly number of transfusions (1.45) was lower than that at hospital (2.77). Higher rate of infections occurred at hospital (54%) versus home (21%; <0.001). Mean weekly cost of care for hospitalisation was significantly higher in a 3:1 ratio versus home care. Compared with hospital, home based assistance produced a weekly saving of e 2314.9€ for the health provider, with a charge of 85.9€ for the family. It was cost-effective by an ICER of -7013.9€ of prevented days of care for avoided infections. Patient-reported symptom burden did not show a significant difference between home and hospital care with regard to change over time, suggesting that symptom control at home was not worse than the one that could be achieved in the hospital. This is an important finding considering that patients in the home care group consisted of more debilitated and older patients than those represented in the hospital care group.

Our study has several limitations, including the limited number of patients enrolled, the non-randomised study design and the lack of details about colonisation and primary antimicrobial treatment undertaken. Also, the study was conducted in two centres where an institutional home care programme was available and active for several years with dedicated trained personnel and, therefore, findings cannot be generalised to those hospitals for which such support is not available.

In conclusion, this study findings suggest that costs of early palliative home care for patients with hematologic malignancies are lower than standard hospital care costs. Home-based assistance may also be cost-effective by reducing the number of days to treat infections in immunocompromised patients.

Charles F. von Gunten, Editor of the Journal of Palliative Medicine, commented on the reason for choosing this paper as their Paper of the Year and explains more about the Journal:

‘In addition to excellent study design and analysis, the subject is a ‘leading edge’ issue globally as the innovation of combining palliative care with standard treatments for cancer now reaches hematological malignancies. This is not unlike other areas of cancer research where independently proven approaches are combined to achieve better outcomes than either approach alone.’

‘The Journal of Palliative Medicine is a global journal with editorial board membership and manuscripts from around the world. The Time-to-First Decision averages only nineteen days and represents our commitment to provide authors with prompt decisions and not have their manuscripts languish in decision queues. We are not just an American journal – the journal enjoys exceptional global visibility. In 2021, there were 1,240,961 full-text downloads and 1,265,512 abstract-only downloads for a total of 2.5 million downloads. Outside the United States, Canada, the United Kingdom, Australia, China, Germany, India, Japan, Brazil, and Singapore are the countries that currently most use the journal. The Journal of Palliative Medicine looks and feels different from other scientific journals serving the field because it has the clinician in mind. In contrast with scientific journals for whom the target is academic researchers, when reviewing submissions, we ask: ‘What will help the clinician who is frequently working in our field to understand what is ‘new’ and what can influence practice?’’

Links and resources

  • Cartoni C, Breccia, M, Giesinger JM, et al ‘Early Palliative Home Care versus Hospital Care for Patients with Hematologic Malignancies: A Cost-Effectiveness Study’. Journal of Palliative Medicine,Volume 24, Number 6, 2021. Read this paper here.
  • Click here to find out more about the Journal of Palliative Medicine.

About the author

Claudio Cartoni is a Hematologist and Medical Director of Policlinico Umberto I, Rome and a Professor at the department of Department of Cellular Biotechnology and Hematology, Sapienza University of Rome.


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Palliative care advocacy: The 72nd Session of the WHO Regional Committee for Europe.

There have been huge strides taken over the last few years to ensure palliative care’s voice is heard loud and clear, regionally and worldwide.  Julie Ling, Worldwide Hospice Palliative Care Alliance (WHPCA) and Katherine Pettus, The International Association for Hospice and Palliative Care (IAHPC) tell us more, but also why we must not be complacent…


Every September the World Health Organization (WHO), including the European region, convene their member states, Secretariats, and accredited civil society organisations to discuss public health issues relevant to their regions, as well as global health issues raised at the annual World Health Assembly. The World Health Assembly consists of delegates from the 194 member states and is how the WHO is governed. The IAHPC and WHPCA known as ‘non-state actors in official relations’ with WHO are invited to attend, observe, participate, and deliver statements on relevant agenda items.  Our reports on previous European regional meetings, and an example of a recorded statement from IAHPC, can be found at the end of this article.

Julie and Katherine, along with other members of our associations, attend these meetings whenever possible – posting statements on the official WHO website, taking the floor at the invitation of the chair, asking questions at side events and technical briefings, and drafting joint statements with other NGOs (non-government organisations).

Unfortunately, on this occasion, we are unable to attend the 72nd meeting, which is on 12th-14th September 2022 in Tel Aviv, Israel.  If you would like to find out more about being registered as an IAHPC or WHPCA delegate, and you can attend at your own expense, please contact us.

The presence of palliative care practitioners and advocates at WHO meetings gives our discipline visibility and airtime. Our pre-drafted statements ensure that palliative care is included in the official meeting report, from which it would otherwise be absent. When we take the floor to comment on specific agenda items, we remind member state delegations, Secretariat staff, and other NGOs that WHO now considers palliative care a global good, an essential service of primary health care and an essential component of Universal Health Coverage. 

The good news is that relentless advocacy has ensured that palliative care now has a place in the official global health narrative, but this requires ongoing effort to ensure that it remains on the agenda. Palliative care advocacy at the WHO Europe meetings provides the opportunity to ensure that, along with the traditional health promotion, prevention, diagnosis, treatment, and (sometimes) rehabilitation, palliative care will also be heard. Without this essential voice from member states and NGOs, palliative care can be relegated to the policy and budgetary shadows.

Agenda items relevant to palliative care at the Tel-Aviv meeting include a technical briefing on ‘Health Systems in Action’; member state discussions on the WHO European Framework for Action to achieve the highest attainable standard of health for persons with disabilities; strengthening health emergency preparedness, response and resilience; learning the lessons and building back better from COVID-19; the roadmap to accelerate the elimination of cervical cancer as a public health problem in the WHO European Region; a technical briefing on the Decade of Healthy Ageing in Europe, and a side event on the Health Workforce in the European region.

In July 2021, Julie was appointed by WHO Europe as a part time consultant Technical Officer on palliative care.  The role aims to contribute to the WHO European programme of work and to strengthen and promote the development of palliative care in the European region.  This includes providing support to countries on the development of palliative care and assisting with technical support, such as the development of national policies.  This is the first such post in the WHO European region.  Julie works closely with her colleagues in the Health Workforce and Service Delivery Unit at the WHO office based in Copenhagen, and those in other divisions, to promote and include palliative care.  Currently the focus of the role is on the development of palliative care in Commonwealth of Independent States (CIS) countries. 

This important role means there is now a key point of contact in the WHO Europe Secretariat, and this will help to strengthen palliative care in the region in the coming years.  We hope that the combination of actions, including palliative care representatives from European member states attending the WHO Regional meeting in person, continue our advocacy efforts to give palliative the visibility it deserves.

Links and resources

About the authors

Julie Ling is the chair of the WHPCA, CEO of the EAPC and is also a part time consultant technical specialist for palliative care at the WHO European Regional Office.

Katherine Pettus, Senior Advocacy and Partnerships Director for the International Association for Hospice and Palliative Care (IAHPC).


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‘Right patient’? Right time? Factors influencing the identification of who to and when to offer serious illness conversations.

We’re delighted to present this month’s ‘Editor’s Choice’ from Palliative Medicine, the official research journal of the EAPC. You can read the longer article in Palliative Medicine which EAPC members can access free from the EAPC website. Sofia Morberg Jämterud and Anna Sandgren asks what influences the timing and identification of patients for serious illness conversations?


Serious illness conversations give patients and their family members an opportunity to talk with their clinicians about wishes and priorities about their care.From previous research we know that this can decrease patients’ anxiety and increase their chances of receiving care that is in accordance with their wishes.1 But it can be difficult to identify which patients should be offered these conversations

In our recent article in Palliative Medicine we examine the question of identification, and more specifically, we explore healthcare professionals’ perceptions about factors influencing the identification process of patients for serious illness conversations. During the implementation of the Serious Illness Care Program2 at two hospitals in Sweden, we observed team meetings where identification was discussed, and we conducted semi-structured interviews with physicians and nurses. The data was collected at a broad range of clinics and did not include specialised palliative care units.

So what did we find? Identification of patients for serious illness conversations is a process influenced by a multitude of factors, such as the patients’ palliative care needs, continuity in patient–professional relations and continuity of staff. Identifying the ‘right’ patient (for example a patient with palliative care needs) and doing so at the ‘right time’ (for example, not too early nor too late in the illness trajectory) were seen as key aspects. Healthcare professionals also pointed out that serious illness conversations can be very emotional and challenging for both parties. Therefore, it is important to have established relationships and continuity in relations between a healthcare team and a patient as a starting point for identification. As one clinician stated: ‘But then, I’m also thinking that it’s important not to barge in. These kinds of conversations somehow require a relation.’

Serious illness conversations may often include the topic of death and dying, and this was considered to have a negative impact on the patient’s hope and since hope is of significance for survival, this becomes a real ethical obstacle. Thus, identification can involve existential and ethical concerns which may impact healthcare professionals’ willingness to identify patients and offer serious illness conversations. However, research has shown that if clinicians are trained to have these conversations, these conversations do not decrease the patients’ hope.3 But even so, the hesitation remains and it is important to take it seriously. Here it becomes clear that these conversations not only require skills in conversation methodology but that they also they touch upon profound human values. Palliative care is based on values such as a holistic view of the human being where care for existential concerns is integral to the meaning of ‘good care’. Furthermore, addressing these existential needs is considered to be an area of responsibility of care – as pointed to in an EAPC White Paper on multi-disciplinary education for spiritual care in palliative care.4 We suggest that it is crucial to address ethical and existential obstacles that can hinder healthcare professionals feeling able and confident to have these conversations. This may be particularly important in non-specialist palliative care contexts. We recognise that identifying patients for serious illness conversations can be challenging but doing so can improve care and experiences for individuals and their families and makes sure that care is in line with their wishes.

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’

We hope you’ll read the longer article in ‘Palliative Medicine’ – EAPC members can access a FREE copy from the EAPC website. ‘Health care professionals’ perceptions of factors influencing the process of identifying patients for serious illness conversations: A qualitative study.’ Sofia Morberg Jämterud and Anna Sandgren. First Published: Palliative Medicine, Volume: 36 issue: 7, page(s): 1072-1079.

References

  1. Bernacki R, Paladino J, Neville BA, et al. Effect of the serious illness care program in outpatient oncology: a cluster randomized clinical trial. JAMA Intern Med 2019; 179(6): 751–759.
  2. Bernacki R, Hutchings M, Vick J, et al. Development of the serious illness care program: a randomised controlled trial of a palliative care communication intervention. BMJ Open 2015; 5(10): e009032.
  3. Thamcharoen N, Nissaisorakarn P, Cohen RA, et al. Serious illness conversations in advanced kidney disease: a mixed-methods implementation study. BMJ Support Palliat Care. Epub ahead of print 17 March 2021. DOI: 10.1136/bmjsp-care-2020-002830.
  4. Best M, Leget C, Goodhead A, et al. An EAPC white paper on multi-disciplinary education for spiritual care in palliative care. BMC Palliat Care 2020; 19(1): 1–10.

Links and resources

Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.

Follow Palliative Medicine on Twitter @palliativemedj

About the authors

Sofia Morberg Jämterud, PhD, is a postdoctoral researcher at Linköping University, and she was recently at Center for Collaborative Palliative Care at Linnaeus University, Sweden. She specialises in medical ethics and has written on issues such as dignity in the end of life and on the relation between vulnerability and autonomy in ethics of palliative care. Twitter: @MorbergSofia. ORCID no: 0000-0003-2998-3971.

Anna Sandgren, RN, PhD, is an Associate Professor at Linnaeus University and serves as the Director for the Center for Collaborative Palliative Care, Sweden.  Twitter: @AnnaSandgren70. ORCID no: 0000-0002-3155-575X.

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE

If you are currently an Individual or Associate EAPC Member, you have full access to the Members Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s Choice’ articles, as well as many other membership benefits. Just click here, enter your email address and membership password and choose from the list of journal articles for 2022.

Join, or renew your membership here. Members of our national associations can join the EAPC for free.


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Palliative Care on Stage: Cicely Saunders and a world changing encounter.

There aren’t often plays about palliative care (though we think there should be!) so we are delighted to highlight a new production debuting at the Edinburgh Fringe Festival this month.  Sociologist and now playwright, Professor David Clark tells us about the play and the historic meeting upon which it is based.


Cicely Saunders and David Tasma.

When Ela Majer Tasma left Warsaw in June 1938, he had no idea how his perilous departure would influence the shape of things far into the future.  Leaving home and family to flee from the coming Nazi invasion, he went to Paris and then on to London. Throughout the war he eked out an existence as a waiter, adopting the name David, and working in a kosher restaurant in London’s West End.

When peace came, David looked forward to better times. Then illness intervened.

In summer 1947, he was seen in outpatients at St Thomas’s Hospital, by a newly qualified social worker, on her very first day in post. He had inoperable bowel cancer.

The encounter between David Tasma and Cicely Saunders holds an extraordinary place within the story of palliative care. When writing the full biography of Cicely I was intrigued to read through papers and archives relating to David, now safely stored at King’s College London. The modest remnants of his documented life give insights into his situation, but also leave much to the imagination.

We do know that Cicely saw David in outpatients and learned something of his story. When he was admitted to hospital in January 1948, she visited him over twenty times, until his death the following month. She sensed his pain over the loss of his family, his estrangement from the Jewish religion, his sense of a life that he considered worthless.

They spoke of many things and shared their personal stories. Cicely listened and tried to comfort him. His spiritual and emotional distress was palpable and seemed to over-ride any physical symptoms.

Cicely gave him a space to share his feelings and work through his sorrows. The busy surgical ward was not an ideal place for this. They talked of somewhere more home-like where people in his situation could be cared for at the end of life. It sparked an idea in Cicely that was realised some twenty years later.

I believe this is a story that is worth sharing.

It marks the start of a remarkable journey through which Cicely Saunders went on to establish St Christopher’s Hospice, which became a beacon of inspiration to so many around the world. It also reveals how a poor migrant, living on the margins of society and thinking his life would leave not even a ripple on the pond, could have such a lasting influence and be a force for real change in society.

In many ways, it is a story for our times.

Playwriting is new to me. But working closely with my dear friend and palliative care pioneer, Dr Jo Hockley, I have dramatized the story of Cicely and David and it will be brought to the Edinburgh Fringe this August for five performances.  Student actors, directors and production people, coordinated by Jo, will place the story of Cicely and David before a theatre-going audience for the first time.

We hope many other performances will follow, placing two remarkable people centre stage.

Links

To find out more and to book tickets for ‘Cicely and David’, click here.

About the author

David Clark founded the International Observatory on End-of-Life Care in 2003 and the Glasgow End of Life Studies in 2009. He has written widely on the history and global development of palliative care and is now Professor Emeritus of Medical Sociology at the University of Glasgow.  His more recent writings can be found here.  Twitter:@dumfriesshire.


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