Rethinking care toward the end of life: Outcomes from a Salzburg Global Seminar

Julie Ling, Chief Executive Officer of the European Association for Palliative Care, and Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK, were in Salzburg, Austria, to attend this global gathering. Here, they set the scene for a new series of posts that we shall be publishing throughout 2017 to encourage a global dialogue and shine a spotlight on the key topics affecting palliative care.

 Prof Sheila Payne

Prof Sheila Payne

Dr Julie Ling

Sixty invited international delegates met in December 2016 to consider global opportunities and challenges in palliative care. They gathered at the Schloss Leopoldskron (some scenes from ‘The Sound of Music’ were filmed here) to discuss and debate seven key questions:

  1. How do we engage patients and families to ensure that end of life care honours what matters most to them, with respect for culture and for context at the level of the individual and the population?
  1. What are the relative contributions of health care and community-based social care in different contexts? How can they best be joined up to maintain function, independence, and agency for people for whom death is near?
  1. How can healthcare systems better support families,  caregivers and community members in caring for people of all ages for whom death is near?
  1. How are robust processes established and implemented for arriving at decisions when patients can no longer express their own preferences? What role does public engagement and government have in this?
  1. Which are the most promising evidence-based and cost-effective innovations in care towards the end of life? What yields the greatest value to patients, especially in low- resource settings?
  1. What can we learn from the systems failures in high-income countries with regard to supporting patients, families and caregivers with palliative care?
  1. How can palliative care best be undertaken in the context of societal deprivation or conflict?
salzburg-562

Sixty invited international delegates met in in Salzburg in December 2016 to consider global opportunities and challenges in palliative care

Salzburg Global (SG) was founded in 1947 with the aim of encouraging intellectual dialogue in post-war Europe. SG aims to challenge leaders to help solve important global issues and since its establishment, SG has been a catalyst for global engagement on critical issues in education, health, environment, economics, governance, peace-building and more. SG achieves this by designing, facilitating and hosting international strategic programmes (seminars). Uniquely, Salzburg Global builds connections with and between people from a broad range of expertise, cultures and professional backgrounds. Over the duration of the seminars, government officials, institutions and individuals at all stages of their professional development and from all sectors are asked to rethink their relationships and identify shared interests, goals and outcomes.

A key outcome of the session was aimed to be the development of ‘A Salzburg Statement of key principles guiding care towards the end of life’. It was a testament to the freethinking and originality of the participants that for the first time in the history of SG, the outcome was not a statement, but instead, a set of nine questions. The questions are designed to highlight challenges facing the global community and will be linked to international ‘days’. Each of the nine questions will be explained more fully in EAPC blogs over the coming year.

There was snow and plenty of hard work, interspersed with some time to socialise and make the most of the beautiful location and, of course, there was schnitzel, Glühwein and a Christmas market.

Find out more . . .

  • Follow the global dialogue on Twitter. Using the hashtag #allmylifeQs the nine Salzburg Questions will be debated throughout 2017.
  • Follow the EAPC Blog for more posts in the Salzburg series.
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After more than 20 years, the McGill Quality of Life Questionnaire is revised

This month’s Editor’s Choice from Palliative Medicine . . .

Robin Cohen, Professor, McGill Departments of Oncology and Medicine and Staff Investigator, Lady Davis Research Institute, Montreal, and Richard Sawatzky, Canada Research Chair in Patient-Reported Outcomes and Associate Professor, School of Nursing, Trinity Western University, Canada, explain the background to their longer article selected as ‘Editor’s choice’ in the February issue 2017 of Palliative Medicine.

Dr Robin Cohen

Prof S Robin Cohen

Prof Richard Sawatzky

Dr Richard Sawatzky

The McGill Quality of Life Questionnaire (MQOL) has been widely used in palliative care research since it was first developed more than 20 years ago.1, 2 People often choose to use MQOL rather than other quality of life assessment tools developed for people at the end of life because it has subscales measuring the four main relevant domains: physical, psychological, existential/spiritual, and social. MQOL also has a summary score that weights these domains equally. Most other tools developed to assess the quality of life of people with life-limiting illnesses don’t have subscales, and/or don’t include the existential/spiritual domain, and/or have a primary focus on physical symptoms, or have many more items. MQOL also allows respondents to list their most problematic physical symptoms, rather than providing them with a list which may not represent their most problematic symptoms. With its use over time, we learned through informal feedback and data collected that there are some aspects that could be improved. Our article in the February 2017 issue of Palliative Medicine describes the first new version, MQOL-Revised, and how and why it was created.

Why did it take more than 20 years? Rather than making small changes in several new versions, we wanted to wait so that we could have a definitive revised version. One reason that MQOL stood the test of time is that it was created comparing results from three datasets, rather than finalizing and publishing it based on analysis of a single dataset. Similarly, MQOL-R is based on four new datasets collected in various populations over time (although mainly oncology).

What is new in MQOL-R? In developing MQOL-R, we aimed to maintain the desirable qualities of MQOL while making the following improvements. At 14 items, MQOL-R has two fewer than MQOL. The original MQOL contains two subscales measuring the physical domain (Physical Wellbeing; Physical Symptoms). MQOL-R merges these together, along with an item rating how problematic it is to be physically unable to do everything you’d like to do. Like MQOL, the focus in MQOL-R remains on the impact of your physical condition on your quality of life, rather than on the intensity of symptoms or the extent of your limitations. The MQOL-R Existential Wellbeing subscale has two fewer items compared to that in MQOL (4 vs 6). The end anchors of the item on control of your life have been changed to make no assumption about whether feeling in control is desirable. Instead of rating how much control you have, you rate the extent to which you have the control you wish to have. In MQOL-R, the subscale measuring the social domain has a greater emphasis on relationships and an item that was sometimes unclear has been eliminated. It has been renamed the Social subscale (from Support). MQOL-R was developed simultaneously in English and in French.

Validation for MQOL-R, as for any patient-reported outcome measure, is an ongoing process. Measurement validity means that 1) we are justified in using the scores to answer the question of interest and 2) the actions and decisions based on that answer are warranted. 3 At a minimum, this involves taking into account the purpose, population, and context. Future research should focus on measurement validation pertaining to the use of MQOL-R for a range of purposes and of situations. 

Links
To obtain a copy of MQOL-R (or MQOL) along with scoring instructions, email Robin Cohen. If you are not using it for profit, it is free to use.

References

  1. Cohen SR, Mount BM, Tomas JJ, Mount LF. Existential well-being is an important determinant of quality of life. Evidence from the McGill Quality of Life Questionnaire. Cancer. 1996; 77 (3): 576-86.
  2. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med. 1997;11 (1):3-20.
  3. Sawatzky R, Chan EK, Zumbo BD, Ahmed S, Bartlett SJ, Bingham CO, 3rd, et al. Modern perspectives of measurement validation emphasize justification of inferences based on patient-reported outcome scores: seventh paper in a series on patient reported outcomes. J Clin Epidemiol. 2016.

 

68504_pmjRead the full article in Palliative Medicine
This blog post relates to the longer article, ‘Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire – Revised’ by S Robin. Cohen, Richard Sawatzky, Lara B Russell, Javad Shahidi, Daren K Heyland and Anne M Gadermann, published in Palliative Medicine 2017, Vol. 31(2) 120-129. DOI: 10.1177/0269216316659603.

Click here to download your free copy of this month’s Editor’s Choice article from the EAPC website.

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

Read earlier Editor’s Choice posts on the EAPC Blog.

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Is palliative care possible in prison? A national PARME study about inmates with terminal illness in France

We continue our series on the posters that caught our attention at the 9th World Congress of the EAPC Research Network in Dublin last year. Conference posters are an important feature of every European Association for Palliative Care Congress – presenting the key messages of a project in a creative, informative and eye-catching way. 

This series also offers an opportunity for discussion of these interesting and challenging posters and makes them visible beyond the (sometimes rather small) range of readers in front of the poster billboards. Maybe this is an interesting new approach to scientific presentations using social media . . .

Aurélie Godard Marceau

Aurélie Godard Marceau

Aline Chassagne

Aline Chassagne

Aurélie Godard Marceau and Aline Chassagne from the Clinical Investigation Center (CIC1431-INSERM) of the University Hospital of Besançon, France, explain the background to their poster.

 

 

Since 2002, the law in France permits seriously ill or dying inmates to request compassionate release in order to receive health care outside of prison. Nevertheless, every year in France, a hundred inmates die in prison as a result of their illness.

We conducted a mixed-methods research that aimed to describe and understand the situation of inmates with a terminal illness (defined as a patient with a life expectancy of less than a year).

We conducted two studies:

  • A national epidemiology study over three months (177 healthcare units in prison (UCSA) and nine secure inpatient care units in hospitals (UHSI)).
  • A qualitative study with 62 individual semi-structured, in-depth interviews relating to the situations of 14 patients.

parme_poster_eapc_defIn 2013, the prevalence of prisoners requiring palliative care was 15.2 per 10,000 inmates (95% CI: 12.5 – 18.3). Our results highlighted that it isn’t easy to provide inmates who are ill with access to effective end-of-life care.

First, the organisation of healthcare units in prisons (UCSA) is limited to provide only primary health care. Moreover, there is no physician or nurse during the night or the weekend. Also, seriously ill inmates have special needs that are difficult to provide, such as equipment to help to reduce pain and discomfort (medical mattress, special food). This is especially prevalent in older prisons since only recently built prisons have adapted cells for people with disabilities. Lastly, relationships with family members are not easy in prison: families have very little information about their relative’s health and can visit them only once or twice a week.

Then, when the health of a seriously ill inmate deteriorates, he/she may be transferred to a secure inpatient care unit (UHSI) in a university hospital for stays lasting more than 48 hours. But while admission to hospital offers better access to painkillers and improved conditions, for some inmates it may also mean being far from their family, even though visiting conditions are easier in UHSI.

It is also important to note that providing palliative care in UHSI is difficult for health professionals: it’s not always easy to get access to the patient because of security regulations and they haven’t been trained to provide holistic end-of-life care. For health professionals, there is also the issue that dying in prison is a taboo, creating tension between what is possible and what they would like to be able to do for the patients.

For all these reasons, physicians and caregivers consider that prisoners with a terminal illness should be released on compassionate grounds and should not die in prison.

To find out more . . .

Is Palliative Care Possible in Prison? National Study about Inmates with Terminal Illness in France, PARME Study,  Godard-Marceau, Aurélie; Chassagne, Aline; Cretin, Elodie; Pazart, Lionel; Aubry, Régis. Abstract number: P329.  View the abstract for this poster in ‘Abstracts of the 9th World Research Congress of the European Association for Palliative Care (EAPC), Dublin, Ireland, 9-11 June 2016’ published online on the Palliative Medicine website.

Reference
PARME Study: PAlliative situations and compassionate Release for MEdical reasons

View more posts in this series on the EAPC Blog. Next week, Mariona Guerrero, Josep Porta-Sales and Rebecca Latter from the WeCare Chair: End of Life Care research group, Barcelona, Spain, explain the background to their group’s poster . . .

 

new-new-eapc17_header_960x21115th EAPC World Congress. Early Bird offer closes 15 February 2017 – up to 25% saving if you book by Wednesday, 15 February!

Click here to register now before the Early Bird offer closes on 15 February. Please share so that others can take advantage of the Early Bird Offer. After 15 February, registration is still possible via the congress website but at a higher fee. Book your accommodation via the congress website. The 15th EAPC World Congress – Progressing Palliative Care – takes place in Madrid 18 to 20 May 2017. To register and find out more, visit the congress website. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #EAPC2017

 

 

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Palliative care: A special form of disinterested charity

A POST TO CELEBRATE WORLD DAY OF THE SICK – SATURDAY, 11 FEBRUARY 2017

Ahead of tomorrow’s World Day of the Sick, Dr Katherine Pettus, Advocacy and Human Rights Officer, International Association for Hospice and Palliative Care (IAHPC), explains the background to a concept note that has just been published by the IAHPC.

Dr Katherine Pettus

Dr Katherine Pettus

When I was visiting Papal Nuncio Bishop Michael Blume, in Kampala, Uganda with Dr Anne Merriman, a few years ago, he surprised me by saying that the Catechism of the Catholic Church calls palliative care: “a special form of disinterested charity.” [1] I have since learned that at least four popes have made statements on palliative care and the rational use of pain medicines, and that there is a vibrant body of teaching on the topic. These are available in the IAHPC Concept Paper on World Day of the Sick (WDS) published on our website.

Pope Benedict XVI made the case for palliative care on WDS 20 in 2007: 

The Church wishes to support the incurably and terminally ill by calling for just social policies which can help to eliminate the causes of many diseases and by urging improved care for the dying and those for whom no medical remedy is available. There is a need to promote policies, which create conditions where human beings can bear even incurable illnesses and death in a dignified manner. Here it is necessary to stress once again the need for more palliative care centres, which provide integral care, offering the sick the human assistance and spiritual accompaniment they need. This is a right belonging to every human being, one which we must all be committed to defend. [2]

Hospice has always been faith based.[3] Its medieval roots lie in the religious orders that cared for the seriously ill and dying before the Reformation, bearing fruit in modern times in St Christopher’s Hospice, London, the institutional (Anglican) inspiration of the modern movement. In some parts of the world, hospice has taken on the secular identity of the wider society, with non-denominational palliative care teams who support people of all faiths (or no faith) in their final journeys. Some of these hospices are functioning as a for-profit enterprise.

Yet, hospice and palliative care services are still only available to less than 20 per cent of the world’s patients who desperately need them, despite the fact that the Roman Catholic Church is the largest global non-governmental provider of healthcare services. It manages 26 per cent of the world’s healthcare facilities, 65 per cent of which are located in developing countries. If every Catholic healthcare institution had a palliative care team, the world would be well along the way to integrated coverage and to reducing the “pain divide” [4] that separates the lower- and middle-income countries from their upper-income counterparts.

The World Day of the Sick (WDS) 2017 is a good opportunity to encourage faith-based healthcare organisations to promote and, wherever possible, develop palliative care through their healthcare networks. Advocates can remind policymakers and administrators about the canonical teachings on the rational use of painkillers [5] to support appropriate training of providers, and to overcome endemic ‘opiophobia’.

As part of our campaign to increase global palliative care literacy, IAHPC wishes to encourage our partners to learn more about faith-based teachings on palliative care. Increasing public and faith-based palliative care literacy can undermine erroneous assumptions that palliative care is the same as euthanasia, or may lead to euthanasia or physician-assisted suicide. We have even seen it called ‘stealth euthanasia’.[6]

In some instances, this confusion and misinformation has led to the deletion of palliative care language in the text of international agreements, or made it impossible for representatives to reach a consensus. It is important to clarify this misinformation with clear information about the clinical remit of palliative care, such as the recently published IAHPC statement on Physician-Assisted Suicide and Euthanasia, as well as authoritative ethical teachings of the major faiths.

Main Points about World Day of the Sick

  • The involvement of palliative care organisations in WDS2017 will emphasise that palliative care is pro-life until natural death.[7]
  • Pope Francis’ message for the WDS 2017 states that:

“Every person is, and always remains, a human being, and is to be treated as such. The sick and those who are disabled, even severely, have their own inalienable dignity and mission in life.” [8]

  •  Palliative care values, and its respect for human dignity until the end of life, are consistent with this message.

Link to the full concept note with a table of authorities and annotated statements by four popes is here.

References

  1. Catechism of the Catholic Church 2279.
  2. http://w2.vatican.va/content/benedict-xvi/en/messages/sick/documents/hf_ben-xvi_mes_20061208_world-day-of-the-sick-2007.html
  3. The origin of hospices/hospitals William E. Phipps, Death Studies Vol. 12 , Iss. 2,1988
  4. Knaul, F. M., et al. “Closing the pain divide: the quest for effective universal health coverage.” The Lancet Global Health 3 (2015): S35.
  5.  “The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable.” Catechism of the Catholic Church 2279.
  6. https://www.chausa.org/publications/health-progress/article/january-february-2014/ethics—palliative-care—stealth-euthanasia
  7. World Health Organization Definition of Palliative Care affirms life and regards dying as a normal process, and intends neither to hasten nor postpone death.
  8. http://en.radiovaticana.va/news/2016/12/15/pope_francis_releases_message_for_2017_world_day_of_sick/1279194
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Advance Care Planning conversation: An open or a scripted conversation?

Continuing a series of posts from members of the ACTION Consortium about their European study that aims to investigate how to support people with advanced cancer to have a conversation about preferences and wishes.

Marieke Zwakman, Marijke Kars and Hans van Delden, Team Utrecht, discuss whether Health Care Professionals should use an open or structured approach when performing an Advance Care Planning conversation.

Marijke Kars

Marijke Kars

Marieke Zwakman

Marieke Zwakman

There is a growing interest in Advance Care Planning (ACP). ACP involves a process of conversations between patients and their relatives about patients’ goals and wishes for future care and treatment to prepare for events in which patients may not be able to make decisions for themselves. Although ACP is viewed as an important strategy to improve the communication between patients and Health Care Professionals (HCPs) (Brinkman, 2014), in practice the frequency of conversations remains low.

delden_2017

Hans van Delden

In the Netherlands, there is no accepted standard on how to perform an ACP conversation. From our experience, HCPs typically conduct these conversations intuitively. They tend to use an open and flexible approach (open strategy). By applying an open strategy, they maximally follow the patient, which means that they reply to patients’ questions and signals in a very individualized and sensitive way. In line with this, HCPs are inclined not to mention topics the patient might not want to talk about or topics they consider to be potentially stressful for the patient. An important goal for HCPs who engage in ACP is to prevent confrontations that could unbalance the patient (Mullick, 2013). However, as a result of this approach patients might miss out on the opportunity to think and talk about aspects of ACP that they themselves do not mention.

Currently, there is an increase in initiatives that provide more guidance to HCPs to conduct an ACP conversation. With the open strategy at one end, the other end of the continuum consists of a completely scripted approach. When HCPs use a scripted ACP conversation guide, discussing all topics that are addressed in the guide may pose a challenge given the barriers for engaging in ACP that have been reported by HCPs (e.g. the fear of upsetting the patient by destroying hope) (Mullick, 2013). However, a script could be a strategy that provides guidance and which enables HCPs to ask potentially difficult questions. Consequently, patients and their relatives will have the opportunity to become aware of the patient’s wishes and preferences and will probably even discuss topics they did not think about before.

It seems that both strategies have a number of advantages as well as disadvantages. Using a scripted intervention enables researchers to safeguard the fidelity of the intervention. Consequently, this will improve the quality of the research. In the ACTION study (a cluster randomised controlled trial in six European countries), a structured ACP script that is a modified version of the ‘Respecting Choices’ programme is tested (Rietjens, 2016). In an embedded qualitative study, we investigate the experiences of the patients, their relatives and their HCPs with this programme. This qualitative study will increase our understanding of conducting, and participating in a scripted ACP conversation and will contribute to the improvement of ACP interventions. 

Links

References

  • Brinkman-Stoppelenburg, A., et al (2014) The effects of advance care planning on end-of-life care: A systematic review, Palliative Medicine DOI: 10.1177/0269216314526272.
  • Mullick, A., et al (2013) An introduction to advance care planning in practice, BMJ DOI: 10.1136/bmj.f6064.
  • Rietjens J.A., et al (2016) Advance care planning – a multicentre cluster randomised clinical trial: the research protocol of the ACTION study, BMC Cancer 16:264 DOI 10.1186/s12885-016-2298-x. 

More about the authors . . .

Marieke Zwakman is a PhD student at the Julius Center for Health Sciences and Primary Care, Department Medical Humanities, University Medical Center Utrecht.
Marijke Kars is Assistant Professor at the Julius Center for Health Sciences and Primary Care, Department Medical Humanities, University Medical Center Utrecht. Hans van Delden is Chair of the Department of Medical Humanities and full Professor of Medical Ethics at the Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht.

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More knowledge, more action: Palliative care for people with a migration background

We are delighted to publish a new series with a selection of posters that caught our attention at the 9th World Congress of the EAPC Research Network in Dublin last year. Conference posters are an important feature of every European Association for Palliative Care Congress – presenting the key messages of a project in a creative, informative and eye-catching way. 

This series also offers an opportunity for discussion of these interesting and challenging posters, and makes them visible beyond the (sometimes rather small) range of readers in front of the poster billboards. Maybe this is an interesting new approach to scientific presentations using social media . . .

Here, Maximiliane Jansky, Sonja Owusu-Boakye and Friedemann Nauck, Palliative Medicine, University Medical Center, Gottingen, Germany, explain the background to their poster. 

Maximiliane Jansky

Maximiliane Jansky

maxsowu-4

Sonja Owusu-Boakye

Friedemann Nauck

Friedemann Nauck

There is an ongoing public discussion in Germany on how to improve participation of people with a migration background in the healthcare system. This encompasses those who have immigrated to Germany, hold a foreign citizenship or have received German citizenship, or for whom one of the former applies to one parent. This topic is also discussed in palliative care.

When searching the literature in 2012, there was no empirical evidence about palliative care provision for patients with a migration background (MB) in Germany. All knowledge was derived from international literature or other fields of health care. We therefore conducted a pilot study on palliative care for people with a Turkish and Arabic MB. In phase 1, we sent out a questionnaire to specialized palliative care providers in Lower Saxony (article in print). We asked about their experience with this patient population, characteristics of their last patient with a Turkish or Arabic MB, and institutional resources. In phase 2, we interviewed healthcare experts from both palliative care and adjacent fields specialized in care for people with a MB.

eapc_poster-mig_finBoth care providers and experts agreed that there are probably access barriers to palliative care for patients with a MB. About 20 per cent of the participating institutions had not cared for a patient with a Turkish or Arabic MB in the last year. However, we noted differences in the attribution of assumed reasons: While those mentioned by care providers lay mostly in patients and families (e.g. “don’t need palliative care because of family support”), experts had a holistic view mentioning interrelated reasons on various levels, societal, healthcare system and patient/family. (See links to abstract below).

Both care providers and experts identified communication as an important challenge. Care providers found it difficult to care for patients who spoke little or no German. Interestingly, although 20 per cent of participants had access to interpreters, their use was not mentioned in the reports on the last patient. Experts stressed the importance of adequate communication with the patient and pointed out that difficulties in verbal communication may also lead to impaired non-verbal communication (e.g. by avoiding contact with the patient). Using skilled interpreters was highly recommended for medical and decision-making processes. Even patients who seem to understand German well should have access to an interpreter, as they may not be able to follow medical terms in stressful situations. In daily care, experts preferred an open and respectful approach to communication.

In our study, access and communication were only two relevant aspects. This was, however, a small pilot study, focusing on one region, a specific patient group, and the care professionals’ point of view. To provide equal access and good end-of-life care for all patients is our responsibility as palliative care providers. To do so, we need both more knowledge and more action when it comes to patients with a migration background. This must be a joint effort of research, practice, education, and healthcare policy.

View the abstract for this poster in the online Book of Abstracts. 

“An Odyssey Without Receiving Proper Care”, Expert Opinions on Under-representation of Migrants in Palliative Care by Jansky, Maximiliane; Owusu Boakye, Sonja and Nauck, Friedemann, Abstract number: P328.

Abstracts of the 9th World Research Congress of the European Association for Palliative Care (EAPC), Dublin, Ireland, 9-11 June 2016’ published online on the Palliative Medicine website.

Follow the EAPC Blog for a weekly post in this series.  Next week’s post will feature Aurélie Godard Marceau and Aline Chassagne from France who ask if palliative care is possible in prisons . . .

new-new-eapc17_header_960x211There are just 102 days before the 15th EAPC World Congress. Early Bird offer – up to 25% saving if you book by 15 February 2017

Click here to register now before the Early Bird offer closes on 15 February. Please share so that others can take advantage of the Early Bird Offer. After 15 February, registration is still possible via the congress website but at a higher fee. Book your accommodation via the congress website. The 15th EAPC World Congress – Progressing Palliative Care – takes place in Madrid 18 to 20 May 2017. To register and find out more, visit the congress website. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #EAPC2017

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Germany has developed National Guideline on Palliative Care for Patients with Incurable Cancer

For the first time in Germany, a national guideline will provide evidence and consensus-based recommendations for best practice in palliative care. Project team leaders, Claudia Bausewein, Steffen Simon and Raymond Voltz explain.

Claudia Bausewein

Claudia Bausewein

Steffen Simon

Steffen Simon

Raymond Voltz

Raymond Voltz

Following a four-year-project under the leadership of the German Association for Palliative Medicine (Deutsche Gesellschaft für Palliativmedizin), the National Guideline on Palliative Care for Patients with Incurable Cancer was published in May 2015 funded by the German Guideline Program in Oncology (a consortium of the German Cancer Aid, the German Cancer Society and the Association of the Scientific Medical Societies in Germany).

More than 50 multi-professional and interdisciplinary institutions and 120 experts were actively involved in the development and consensus process of the guideline. Moreover, people from diverse professional societies, as well as representatives of patients and their families played an important role. In close collaboration, these diverse contributors formulated and formally consented to treatment recommendations on the basis of both best available evidence (scientific studies) and clinical experience to ensure the provision of timely and best possible palliative care. From a total of 230 recommendations, half are evidence-based, the other half was based on consensus.

The main goal of the guideline is the overall improvement of care of patients suffering from incurable cancer and their families. In order to achieve this, multiple aspects have to be taken into consideration, which are addressed in the various chapters of the guideline. These are breathlessness, cancer pain, constipation, depression, communication, the dying phase and organisation of palliative care in the healthcare system. The recommendations have been developed with the aim of supporting all healthcare providers involved in the treatment of these patients and will serve as a key aid for future decision-making in practice.

For the first time, there is now a national guideline in Germany complying with the highest quality standards in guideline development according to strict methodological criteria: evidence appraisal through assessment of primary studies and systematic literature reviews, representative guideline group, and structured process of reaching a consensus. All this allows the guideline to provide evidence and consensus-based recommendations for best practice in palliative care.

The development of the new guideline clearly demonstrates the significant evidence available in palliative care to date. It enhances the decades of experience already collected in palliative care practice. However, it also shows that there is an ongoing need for research in this field to fill the evidence gaps and for further efforts and investments to continue the improvement of palliative care. To contribute to this important ongoing development, an extension of this national guideline is currently in progress on eight additional topics (malignant bowel obstruction, nausea and vomiting, sleep disturbance/night agitation, wound care, fatigue, anxiety, treatment goal decision-making, and dealing with the desire for hastened death). This will be published in 2018.

Links and references

  • Bausewein C, Simon ST, Pralong A, Radbruch L, Nauck F, Voltz R: Clinical practice guideline: Palliative care of adult patients with cancer. Dtsch Arztebl Int 2015; 112: 863–70. DOI: 10.3238/arztebl.2015.0863.

More about the authors

Prof. Claudia Bausewein is Director of the Department of Palliative Medicine at Munich University Hospital, Germany.
Dr. Steffen Simon is Consultant in Palliative Medicine and Internal Medicine, Senior Clinical Research Fellow at the Center of Palliative Medicine and Clinical Trials Unit, University Hospital Cologne, Germany.
Prof. Raymond Voltz is Director of the Center of Palliative Medicine at the University Hospital Cologne, Germany.

 

eapc_logo_fbEAPC to create an online database of palliative care guidelines – can you help?

The European Association for Palliative Care (EAPC) head office team are creating an online database of national palliative care guidelines. If your national palliative care association has produced guidelines and would be willing to share these with others, please email Catherine Murray with information and contact details so that she can take this further.

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