Dr Sara Morris

Volunteers are integral to the history of hospices and continue to play a vital role. However, economic, policy and demographic challenges in the twenty-first century raise questions about how best to manage this essential resource. I am part of a team of researchers who have been conducting a research study into volunteering, Volunteer Management in Palliative Care, using a national survey and detailed case studies in English hospices.

The study has several phases and we are now beginning to write up our results. In the first phase I was responsible for conducting a wide-ranging narrative literature review into volunteers in end of life care. This was published online in Palliative Medicine last year and we are delighted that it has been picked as the ‘Editor’s choice’ article for the May 2013 edition of the journal.¹

In the case studies we interviewed 205 people in total – staff, volunteers, patients and their family members – at 11 case study sites in England. Spending several days at each site, I encountered warm welcomes and interest in the study. We are analysing the data under four overarching themes: the impact of volunteering; management practice; relationship to the external context; and the role of volunteering in the hospice. Currently, we are organising two workshops to which we are inviting representatives of each participating hospice and policymakers to talk with us about our results and to offer suggestions as to how volunteering can be best managed to improve services for those needing hospice care.

Our study confirms the importance of volunteers to the functioning of hospices. In all those we visited volunteers were seen to provide substantial resources in a range of roles and settings across all services, such as practical support and various levels of psychological and social support. These roles varied from highly skilled roles such as bereavement counsellors, nurse helpers or complementary therapists (involving professionally qualified or specially trained volunteers) to roles that offered ‘added value’ to existing services, such as just ‘chatting’ and ‘being with’ patients, delivering food and drinks or arranging social activities.

The study is designed to provide helpful suggestions for those that manage volunteers and for hospices in general. Our findings will be fed back to policymakers and practitioners and we will also be writing detailed analyses of our findings for publication later this year. We very much hope to be adding to the evidence base on volunteering in hospices and support the development of volunteering in the twenty-first century.

Read the full article in the May 2013 edition of Palliative Medicine

The study is led by Professor Sheila Payne of the International Observatory on End of Life Care in collaboration with Nick Ockenden of the Institute for Volunteering Research  and is funded by Dimbleby Cancer Care and Marie Curie Cancer Care.

References
1. Morris S, Wilmot A, Hill M, Ockenden N, Payne S. ‘A narrative literature review of the contribution of volunteers in end-of-life care services’ Palliat Med, 2013 May; 27 (5): 428-436. First published on 24 July 2012, DOI: 10.1177/0269216312453608.  (To download a free copy of this paper, please see below).

Find out more…
EAPC members and registered users of the EAPC website can download a free copy  of this article and other ‘Editor’s choice’ papers from the EAPC website. (Just follow the instructions in the top right-hand corner of EAPC home page to register or login, and scroll down to download the article). Click here to view other EAPC-originated papers on the EAPC website.

Click here to read other posts (including one by Sara Morris), previously published on the EAPC blog, about volunteering in palliative care.

Join us in Prague…
Volunteering in hospice and palliative care is on the agenda at the 13th World Congress of the EAPC, with parallel symposia on 31 May and a full-day workshop on 30 May that includes a meeting to found the EAPC Task Force on Volunteering in Palliative Care. Registration is required for the workshop but some places may still be available. Check the final programme for details.

Dr Claudia Gamondi

Core competencies in palliative care education is the subject of a newly published EAPC white paper that brings together in a single document the many educational resources that have been developed across Europe. The European Association for Palliative Care (EAPC) has previously published a series of competency-based curriculum guidelines for palliative care professionals, for medicine, nursing and psychology and others are in preparation for social work. Guidelines are also available for chaplaincy/pastoral areas (though these were not produced by the EAPC). With so much valuable material around, the EAPC wanted to bring everything together in one place that would strengthen interdisciplinary thinking.

Widening the borders of palliative care education
The general question we posed was: ‘What competencies for clinical practice in palliative care are important for all practitioners, irrespective of their specific discipline?’

With this aim, we did an exhaustive review of the existing documents, derived from European and North American published literature, to identify differences and commonalities in the curricula. We submitted a draft document listing core competencies to a group of international experts, representing both clinical and academic fields of the different professions involved in palliative care. After review, the EAPC board of directors approved the final document.

Ten core competencies are described, ranging from responding to physical needs of the patients to care coordination across different settings of care. These competencies should be considered as a means to share a common language in education about palliative care in Europe. The first part of this white paper was published in the March/ April issue of the European Journal of Palliative Care, and now the second part of the document appears in the May/June issue.

We suggest that you read these papers as a benchmark to which we should all aspire during our professional career, not as a tool to judge capacities and performances of professionals. We hope that this white paper will be a useful tool for both educators and practitioners, and look forward to receiving comments and feedback from you after reading our paper.

Read the full article in the March/April and May/June issues of the European Journal of Palliative Care

I have very much enjoyed working on this project during my sabbatical at the International Observatory on End of Life Care and I have found very impressive the commitment demonstrated by the experts in reviewing the paper. I was amazed how, across the different cultures and different countries, the reviewers shared a common ground and philosophy in interpreting palliative care core constituents and agreed with the proposed competencies. 

To find out more…
Two longer articles to which this post relates, ‘Core competencies in palliative care: an EAPC White Paper on palliative care education – part 1 and part 2’, by Claudia Gamondi, Philip Larkin and Sheila Payne, are published in the March/April and May/June 2013 issues of the European Journal of Palliative Care (vol. 20.2 and vol. 20.3) respectively. If you already have a web-based subscription to the EJPC you will be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription.

EAPC members and registered users – you can download these articles free of charge on the EAPC website. (You may need to login or register first in the top, right-hand corner of the screen). EAPC members also receive discounted subscription rates to the EJPC – click here to subscribe online.

When does a broken heart become a mental disorder? Rarely, if ever.

But don’t tell that to the American Psychiatric Association, which has just released its fifth version of the Diagnostic and Statistical Manual of Mental Disorders. The DSM is a catalogue of mental disorders, hundreds of them, each trailing a listing of symptoms. The manual informs selection of a diagnosis, which is required by US insurance companies for reimbursement for mental health care.

There’s a major change in the newest version, DSM-5, with serious implications for the millions of people who are coping with the death of a child, spouse, parent, friend, or other loved one.

But first, a quick glimpse at the history of this publication, often referred to as the bible of psychiatry. The very first edition, published in 1952, didn’t even refer to grief, considering it an accepted and normal reaction to the death of a loved one. The third edition added an exclusion statement under Major Depressive Disorder, referred to as the “bereavement exclusion.” Under this exclusion, a diagnosis of Major Depressive Disorder could not be made for a full year after a death. They recognized that normal and common reactions to the death of a loved one could look like symptoms of depressive disorder, for example, sadness, disturbed sleep, lack of concentration, changes in eating, and loss of interest in things that were once pleasurable.

In 1994, the 4^th version of the DSM reduced the bereavement exclusion to two months after a death, and this new version removes the bereavement exclusion completely, meaning in effect that anyone can receive a diagnosis of Major Depressive Disorder two weeks after the death of a child, parent, spouse, friend, or anyone.

Why does this matter? For at least three reasons:

First, normal reactions to the death of a loved one will be easily misclassified as the mental disorder depression. Grief is not the same experience as major depressive disorder. It is not an illness to be treated or cured. It is a healthy response to a painful reality that one’s world is forever altered, and will never be the same. Absorbing this loss, and adapting to all the changes it unleashes, has its own unique course for every person, and will not be stilled or stopped by quick fixes or simple solutions. Death is a life-altering event, but grief is not a pathological condition.

Second, antidepressants are commonly and frequently prescribed. There is a strong likelihood that newly bereaved people will qualify for a diagnosis of Major Depressive Disorder just two weeks after a death even though their reactions are normal.  Antidepressants have not been shown to be helpful with grief-related depressive symptoms, and there is accumulating evidence of long-term negative effects of being on antidepressants. We need to ask why psychiatry is pathologizing grief and therefore making inappropriate pharmacological treatment easier. And we should not overlook the self-interest of pharmaceutical companies who see a new and substantial market for antidepressants, currently a multi-billion dollar industry.

Third, about 80% of prescriptions for antidepressants are written by primary care physicians, not psychiatrists. We have the expectation that physicians, as well as psychologists, social workers, and clergy, to whom many of us turn for help after losses of all kinds, have professional training, solid research backing, and supervised experience to guide them. Some do, but in fact, a considerable majority of practitioners with these degrees have no professional training at all in responding to the bereaved.

The caution here?  Be wary of physicians or other medical professionals who rush to prescribe antidepressants to address your grief.

Here’s a better prescription: Mourn the death of your loved one in your own way. There is no prescribed formula. You may cry; you may not. Your reactions will be shaped by many things: the relationship you had with the deceased, your personality style, and the support or lack of support you receive from others. Push aside those who tell you to move on, that every cloud has a silver lining. What one person finds comforting might not work for another. Find friends and family who understand, and with whom you can share your experience. If they won’t listen or help, or if their help is not enough, search for support groups through your local hospital, hospice or community organizations. Don’t be afraid to seek professional help, but if you do, ask about the person’s training, qualifications, and experience with grief, loss, and bereavement.

We grieve as deeply as we love. We can get off track with love, and we can respond to our grief in ways that aren’t healthy, or don’t serve us well. But let’s not make love, or grief, a mental disorder.

An invitation from the authors…
This document was written by a group of concerned professionals in response to the release of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5). You have full permission to translate the document into other languages, and to distribute it via websites, blogs, the media, and other venues. It is our intention that the message be shared widely.

Click here for more about the International Work Group on Death, Dying, and Bereavement. The group welcomes your comments, either via the blog or by email.

Acknowledgement
The EAPC acknowledges permission to reproduce the above statement.

The ATOME Conferece – in a ballroom

A touch of summer, with a glittering sun over the Danube – majestic scenery for the 6^th national ATOME conference on improving access to opioid medication held on 26 April 2013 in Budapest, Hungary. Dr Hanna Páva, Deputy Secretary of State, officially opened the conference and highlighted recent improvements to the availability and accessibility of opioids in Hungary. While until recently Hungarian opioid policy had focused on control rather than education or access, the updated WHO policy guidelines [1] had prompted the government to take legislative action by reducing excessive bureaucracy and red tape.

Training, protocols, attitude – overcoming ‘opioiphobia’
Throughout the conference there was strong emphasis on the need for more systematic education on treatment of pain and opioid dependence. Notably, one working group was called ‘Training, protocols, attitude’, reflecting the Hungarian experts’ perception of the strong link between these factors.

“Health care professionals’ attitudes towards opioids play a key role in promoting policy change and improved access since many clinicians still associate opioid therapy with end stage terminal illness rather than best practice pain control,”  said Dr Páva. Notably, the average number of hours of pain content in undergraduate medical studies in Europe appears to be higher for veterinary science than for human medicine, as Dr András Telekes, oncologist and university professor, pointed out. Dr  Erica Budai, head physician of the pain department at the Jahn Ferenc Hospital, deplored a widespread lack of empathy: “Often, neither politicians nor we as physicians and nurses fully understand the social implications of pain for patients. The pain does not hurt us – so we do not care.”

Conference speaker:
Dr András Telekes

Taboos around harm reduction
Mr Peter Sarosi, drug policy programme director of the Hungarian Civil Liberties Union, talked about the taboos related to harm reduction approaches in Hungary. In the 1990s, physicians who applied opioid substitution faced the risk of prosecution against them. There had also been resistance against needle exchange programmes. The government started supporting these programmes around the year 2000; however, there is still a legal uncertainty among healthcare providers regarding the provision of sterile syringes. Also, reimbursement of pharmacological treatment is insufficient. The right dosage of methadone maintenance is of key importance to eliminate craving, not just withdrawal symptoms, otherwise relapse or additional illicit opioid consumption is likely to follow. At the moment, subsidy for methadone only covers 8mg/day while it is well known that the appropriate treatment dose is at least 12 – 14 mg/day. Peter Sarosi noted that “every single Dollar, Forint or Euro invested in harm reduction programmes will save at least four Dollars, Forints or Euros for the society.”

Critical mass to make a change
Eva Luxné Gecső, senior counsellor at the Ministry of Human Resources and leader of the Hungary ATOME country team, encouraged the delegates’ engagement during their small group work in the afternoon of this one-day conference:  “Although the ATOME project is almost at its completion we must not get tired because the work is actually only beginning.” Dr Willem Scholten supported this momentum in his closing words, reflecting on everyone’s contribution in improving access to opioid medication.

“We are not only the policy makers or the physicians, but we are also the patients and the relatives themselves in the end. That’s why every policy maker should have an interest in ensuring good opioid treatment. The investment in appropriate opioid availability is always paying back.” He appealed to people’s influence and ability to make a change.

“If you go home and forget about the work today, nothing will happen. But if you continue to think about it, you can start discussing the topic in the boards of professional organisations or writing about it in professional journals – you can generate a critical mass in the Hungarian society.”

Reference
1. WHO Policy Guidelines Ensuring Balance in National Policies on Controlled Substances, Guidance for Availability and Accessibility for Controlled Medicines. 

To find out more …
Click here to read a blog post by Dr Katalin Hegedus and Dr Agnes Csikos that elaborates on some of the issues raised here. You can also read more about other ATOME conferences and activities on the EAPC blog.

Join us in Prague…
To learn more about ATOME please come to the session ‘Regulatory Barriers in Palliative Care Opioid Treatment’ highlighting key findings from the ATOME policy and legislation review and their implications for palliative care practice. It’s on Saturday, 1 June 2013 at 16.30 – 18.00; Parallel Symposium (PS22), Meeting Hall IV. You can now download the final programme for Prague 2013. 

Dr Sean Hughes

Researchers from 10 European partners are working to discover the best ways to provide integrated palliative care to those with advanced cancer and chronic disease. The study – InSup-C – aims to build on examples of good practice from across the continent. InSup-C is funded by the European Commission under the Seventh Framework Programme (FP7). It will run for four years, coordinated by Dr Jeroen Hasselaar from the Netherlands in collaboration with the expert chairs of five work streams.

We know that well delivered palliative care can help ease the burden on people approaching the end of life. But getting professionals and organisations to work together in a coordinated way can be a challenge.

As a palliative care social worker in the UK, I became aware that peoples’ experiences were varied. Sometimes a person had a range of services that helped them at the right time, in the right place, and to the right extent. Others seemed to have little effective support and experienced services that were duplicated, disorganised or absent. Sometimes people didn’t know who should be providing what, amongst the professionals that came to help. On some occasions, professionals and agencies appeared to be working in opposition to one another and confusion reigned. There were also examples of good and effective services and these are the models that InSup-C will explore – a task I will help with in my research associate role.

Work has begun on examining the evidence for integrated palliative care in previously published research. This will establish a list of service models that already exist. Once this work is complete researchers in five countries will follow some patients during their contacts with palliative care services. This will help our understanding of what it’s like to live through this experience from the service user point of view.

We anticipate that our study will identify what works best. This information will be presented on InSup-C’s dedicated website that we are currently developing.  In time, a checklist on the site will enable services to measure themselves against agreed standards for integrated palliative care. For professionals, an e-learning platform will support practice development and encourage them to influence local service improvement. A book of best practice examples, to be published towards the end of the project, will be supported by journal articles, presentations at conferences and other publicity. A meeting of those who make and influence health and social care policy at national and international levels will be held in order to maximise the impact of the study.

InSup-C is a truly collaborative effort that has the potential to improve the care we offer to those facing chronic, long-term decline and death across Europe. If we can ease this passage, we will have succeeded.

We welcome your comments and views. Please comment below or, if you prefer, you can email me direct.

Join us in Prague…
If you’re attending the EAPC World Congress in Prague 2013 please come along to the InSup-C meeting and share ideas with us on Saturday 1 June. (Please note that this is a closed meeting; however, the last  30 minutes – 13h30 to 14h00 – are open to anyone who wishes to attend. Room 222).

Dr Jeroen Hasselaar and Dr Marieke Groot

On 29 January 2013, researchers from The Netherlands, Germany, Hungary, the United Kingdom, Belgium and Spain met in Amsterdam for the kick off meeting of a new European project, InSup-C, that aims to contribute to a better understanding of integrated palliative care in Europe. Also present at the meeting were representatives from the European Association for Palliative Care (EAPC) and the World Health Organization (WHO).

Integrated palliative care
The number of people living and dying with advanced stages of cancer and other chronic diseases in Europe has increased and is expected to rise further. These patients, often in need of adequate symptom alleviation, can be found in any place or care setting. This can result in fragmented care, an undesirable outcome for patients and caregivers in such a vulnerable phase of their lives. Working as a researcher and a health policy worker now for about a decade, I felt that there was a need to pay more attention to this topic. This was the starting point of our project.

The project, funded by the EU, will focus on integrated palliative care. Integrated care involves the integration of administrative and organisational aspects as well as clinical guidelines and service delivery in order to promote collaboration and to improve the experiences of patients and caregivers in Europe. This project will investigate integrated palliative care initiatives across Europe and aims to explore the requirements for best practices. Involvement of patients and local caregivers will be pivotal.

Building links across Europe
As a coordinator of the project, I was very glad to meet with our consortium of well-known researchers in the field of palliative care in Amsterdam, in our national science museum, NEMO. This was an inspiring place for the setting-up of a new and challenging research project. We hope that this project will contribute to a better understanding and implementation of integrated palliative care, and that it will stimulate palliative care collaboration across Europe for the sake of palliative patients.

Join us in Prague…
At the 13th EAPC World Congress in Prague we will have a meeting on Saturday 1 June at 13h30 to 14h00. People who are interested are welcome to come and share ideas. If you can’t attend but want to share ideas please email us. 

Coming up…
Follow the blog later this week when Dr Sean Hughes will be contributing another post on the InSup-C project.

Professor John Ellershaw

There is an urgent need in the UK to find our way to a proper debate about death and dying. As a society it is perhaps our greatest taboo subject, more so than is the case in many other countries with whom we work in partnership to improve care for dying patients. This is having an ongoing detrimental effect on patient care in the here and now and if not addressed will continue to hamper efforts to improve that care for the foreseeable future.

Many readers will be aware of the ongoing public policy and media debate focusing around the Liverpool Care Pathway for the dying patient (LCP).

With strong views – regarding euthanasia on the one hand and preserving life at any cost on the other – the LCP can sometimes become the focus for both sides of a polarised debate. The reality, however, is that the LCP sits squarely in the middle ground of these debates. The LCP seeks neither to hasten death nor prolong life. Indeed, the sole purpose of the LCP is to provide the best possible care for people in the last hours or days of their life.

The LCP programme, of course, is about much more than the document itself, which reflects the ten key elements of best care for the dying patient. The LCP is a continuous quality improvement programme that, when implemented, can support achieving improvements in care for dying patients in that setting.

There are challenges, of course, in achieving best care for dying patients in hospital settings especially when, in England, we have more than half of deaths occurring within hospitals.

We already know from national audits that there is a need for improved education, training and the availability of specialist palliative care teams within hospitals. A key part of this is continuing to focus on ensuring that effective communication – between clinicians, patients and families – is central to care culture and practice.

In March 2011 an international LCP reference group was formed, with representatives from 11 countries involved in LCP Continuous Quality Improvement Programmes. As a group we share many challenges across cultural, and national boundaries and share a common purpose that transcends them – achieving best care for the dying patient.

Read the full article in the May issue of the European Journal of Palliative Care

We have concluded more recently that accreditation of hospitals that care for dying patients could be a useful step forward in ensuring that best care is being implemented, based around the LCP as the model for that best care. This accreditation would strengthen assurance, being based on Continuous Quality Improvement Programme methodology.

We have written as a group in this month’s European Journal of Palliative Care to explain the fuller background and history to the development of the LCP programme and how we have arrived at this view regarding accreditation. We’d welcome colleagues’ views.

To find out more…
The article to which this post relates, ‘Care of the dying and the LCP in England: An international perspective‘ by John Ellershaw, Carl Johan Fürst, Urska Lunder, Mark Boughey, Steffen Eychmüller, Susan Hannam Hodgson, Dagny Faksvåg Haugen, Bridget Marshall, Helen M Walker, Susie Wilkinson, Raymond Voltz and Lia van Zuylen is published in the May/June issue of the European Journal of Palliative Care (vol. 20.3).

If you already have a web-based subscription to the EJPC you will be able to download this issue, plus all articles in the EJPC archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription.

Members of the EAPC receive discounted subscription rates to the EJPC – click here. 

Naveen Pappachan

I didn’t actually know what palliative care even meant two years ago. I found out when I attended one of Dr Suresh Kumar’s talks at King’s College London in 2011. It was through him I found out that not all people in this world have the privilege of universal access to palliative care. (1) This was the case in India until Dr Suresh and a handful of other individuals established the Calicut Institute of Palliative Medicine  in my city of birth in 1993. Together, they started a revolution for palliative care across Kerala and their influence continues to spread across the rest of India. Through community participation in care they were able overcome the initial scarcity of resources and now the Kerala government and the local governments have started funding palliative care initiatives.

Inspired by the talk, I decided to journey to India and see this for myself. Upon arrival I was greeted with warm weather and warm hugs from my family who live there. After spending a day with them I immediately set off to Calicut. Upon arrival at the inpatient unit of the Institute I witnessed for the very first time in my life, a death. I still remember the image vividly – the man’s wrinkled face turned yellow, his innocent eyes staring into heaven, his wife sobbing softly next to him and the comforting circle of medical staff around them. Before I was fully able to process what I saw I was whisked away by one of the caretakers and given a tour of the place; the image still burned strong in my mind. I was shown my living quarters which looked strikingly like one of those holiday homes you only see in brochures and had a stunning cliff-side view of bright green coconut tree woods. Here I stayed for the rest of my experience, although appreciating the view was a lot harder with the memories of the suffering I saw each day still fresh in my head to this day.

The article to which this post relates appears in the February issue of the EJPC

What I remember more than anything, however, was the amazing commitment, love and respect shown by every single member of staff who worked with the Institute: doctors, nurses, paramedics, volunteers, etc all showed these qualities uncompromisingly. It is through their teamwork, I believe, that the Institute is able to deliver high quality holistic care to all of its patients everyday. Witnessing their dedication has cemented my desire to work in the medical profession. I dream about working as a doctor at the Institute one day, or perhaps even starting a similar service in another deprived part of the world. I hope to go to Calicut again in the summer of 2013, perhaps with a few friends. It was a truly a life-changing experience.

To find out more…
The article to which this post relates, ‘How community involvement is changing palliative care in Kerala’ by Naveen Pappachan, was published in the January/February 2013 issue of the European Journal of Palliative Care (volume 20, number 1). If you already have a web-based subscription to the EJPC you will be able to download this issue, plus all articles in the EJPC archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription.

Members of the EAPC receive discounted subscription rates to the EJPC – click here to subscribe online.

1. The Prague Charter: Palliative care a human right demonstrates how we can all work together to advocate access to palliative care as a human right.

Please support the Prague Charter by signing the petition. 

Harmala Gupta

Palliative care is looking up in India. We are on the verge of passing an historic bill in parliament that will widen access to oral morphine by simplifying the current licensing procedures. Registered medical institutions will be able to help those who until now had little other recourse than to beg for an early end to their misery.

I recall making a visit with our CanSupport home care team when we did not have a licence for oral morphine. Exhausted, the family were on a constant 24-hour vigil to prevent their loved one from jumping off the roof as he could no longer bear his pain. It is hoped that with the passage of the amended NDPS Bill (Narcotic Drugs and Psychotropic Substances) such tragic stories will be a thing of the past.

It has taken almost two decades to amend this bill and to bring it to parliament. It is the culmination of the combined efforts of a number of dogged individuals and institutions working in palliative care in India and abroad. There are many who have also played their part by sharing their stories of pain and suffering. Sumita had looked into my eyes and made me promise that no one would suffer the way she had, travelling long distances and spending hours sitting on a hospital bench in excruciating pain to get oral morphine: “Bring it to our homes,” she begged.

The pharmaceutical industry is perturbed that a clause inserted in the amended bill to protect them from unnecessary harassment has been dropped on the advice of the Law Ministry. This clause sought to temper punishment for “inadvertent” errors by reducing it from a jail sentence to a monetary fine.

There is also an apprehension that when the demand for oral morphine rises we shall be unable to meet it. This is because the present methods for growing the poppy plant, extracting its gum, and processing it in government factories, are all outdated. Recognising this, the Revenue Department which, for historical reasons, still controls opium production, asked private pharmaceutical companies to apply for the right to produce oral morphine. It was hoped that this would introduce more effective production techniques that would in turn increase the amount of morphine powder, which at present is 250 kilograms. This may look like a large amount given the present miniscule use of oral morphine, but come easier regulation, more training in the use of oral morphine and further growth of palliative care units, we could be facing a situation of acute scarcity.

To conclude, even as we justifiably toast our success in amending the NDPS Bill, which we hope will be passed in this session of parliament, we must also prepare for its consequences.

To find out more  …

• The website of the The Indian Association of Palliative Care includes stories about palliative care in India, other useful links and resources and a directory of services.
• CanSupport, founded by Harmala Gupta in 1996, is the largest home-based palliative care programme in India. Click here for more information.

Join us in Prague…
If you’ve enjoyed this post, you can hear more about palliative care in India at the 13^th World Congress of the EAPC. Harmala will be speaking on ‘Volunteers: The model of India’.

Coming up…
On Thursday, we’ll be publishing another story from India when a sixth-form student from the UK visits Kerala for a life-changing experience.

Prof Arvydas Seskevicius

In January 2009, the Palliative Medicine Association of Lithuania signed up to the Budapest Commitments. Palliative care had been introduced only two years before, so the need for palliative care was huge, and there was much work to do…

Our goals were:

• To implement a palliative care system in Lithuania
• To implement palliative care education programmes for all healthcare specialists.

Overview
Lithuania is in Eastern Europe with a population of about three million people. Each year, about 17,000 people are diagnosed with cancer with 8,000 deaths annually. In 2007, indications for palliative care were set depending on the disease and Karnofsky and Bartell indices: palliative care is provided to a wide range of patients with Karnofsky index <50% and Bartell’s index ≤40 points. In 2012, palliative care was provided to 2,027 patients.

Image: By Peter Fitzgerald

Palliative patients prefer to receive care at home, but if this is unavailable treatment is provided in hospital settings: oncology hospitals, hospices and regional hospitals. Thirty-two institutions are licensed to provide state-financed palliative care, providing about 230 beds. We’re now discussing with our Ministry of Health the creation of specialised palliative care units with a minimum of eight beds. All outpatient palliative care services are financed by the state; only Caritas receives funding from various projects and from the Church. Home visits are made by a nurse and volunteer and, if needed, a physician and/or a social worker.

The use of volunteers in palliative care (typically retirees, students and medical specialists) has been going on for several years, and annual training is provided. The number of volunteers is higher in large cities with too few in rural areas. Palliative care is not very popular among medical professionals because of the emotional burden, and also because salaries for staff in some palliative care units are lower than in other inpatient/outpatient units.

Access to medication
With increasing availability of medication in recent years, we can provide the medications suggested in the IAHPC Essential Medicines for Palliative Care.

Policy
Palliative care is integrated into the National Cancer Control and Prevention Program. Following a Ministry of Health decree in 2008, palliative care in inpatient units, at home, and day-cases have been financed by the state so that patients receive the services free of charge.

Education
There is no education in palliative care for medical undergraduates, although it is available for resident family physicians. Palliative care as a subject is included in the nursing undergraduate programme. We have a postgraduate course on ‘Palliative care’ for physicians, nurses, social workers, psychologists, and physiotherapists. Learning is based on teamwork.

Research
The Ministry of Education and Science has not included scientific research in palliative care into their plans; such research is conducted at the initiative of individual researchers. However there have been several studies undertaken within the country and international research projects are ongoing with partners in the Netherlands and Poland.

International links
The Lithuanian Society of Palliative Medicine cooperates with several organisations including The Tiltas Trust, St Christopher’s Hospice and St Luke’s Hospice in the UK; and Poznan University of Medical Sciences, Department of Palliative Medicine and Hospice ‘Pallium’ in Poland.

The future
We continue to strive for centralised palliative care, with separate units in hospitals or hospice units (currently, we have 2-4 beds dispersed among different hospitals) and we will seek better financing and finally we will try to ensure that palliative care becomes a priority field of medicine. 

Find out more…

• Read about the background to the Budapest Commitments on the EAPC website. 

• Click here to read how other national organisations have used the framework of the Budapest Commitments to develop palliative care. 

• All published material will be summarised by Dr David Oliver in his guest editorial in the May/June 2013 issue of the European Journal of Palliative Care and will be presented at the 13th World Congress of the European Association for Palliative Care in Prague 2013.