Scoring a goal for palliative care – a celebration for World Hospice and Palliative Care Day

The theme of this year’s World Hospice and Palliative Care Day is: Universal Health Coverage and Palliative Care: Don’t leave those suffering behind! As Stephen Connor explained in his post last week, “Central to Universal Health Coverage is a focus on equity: ALL people must be able to access these services.” And raising awareness of palliative care is crucial to widening access.

To celebrate this year’s event, a project to promote palliative care in primary care and the community, teamed up with their local football team. Dr. Santiago Corrêa and Carla Mazuko ofEstar ao Seu Lado – Cuidados Paliativos na Atenção Primária,’ Rio Grande do Sul, Brazil, explain.

Dr Santiago Corrêa, family physician and founder of Estar ao Seu Lado with the project’s nurse, Carla Mazuko. Santiago describes Cicely Saunders as his personal inspiration to do palliative care, while Obdulio Varela has inspired him to keep going.

Our preparations for this year’s World Day included close cooperation with our local football team, Sport Club São Paulo. Why? – Because football moves passion beyond borders.

“When we go onto the pitch we are looking for victory,” – Obdulio Varela, captain of Uruguay´s national team, talking about the victory over Brazil in the final game of the World Cup in 1950. His classic statement at the beginning of the match: “Los de afuera son de palo, que comience la función,” (translated literally as “The crowd are of wood, let the show begin,” meaning don’t be intimidated by the crowd, resulted in a win for Uruguay and represents the idea that if you try your hardest you will overcome obstacles and, at the end, win the hardest game.  

Using the potential of that passion, football can be an effective tool to share the message of a better way of caring. That’s why our project teamed up with Sport Club São Paulo, a Brazilian football team from Rio Grande, Rio Grande do Sul. Raising awareness about palliative care and promoting it within the community is the key to the future of palliative care. We need to offer a new public health approach, as demonstrated by the Compassionate Community concept where the whole community: family, neighbours, local organisations, and healthcare providers work together in a particular area to support patients and families. The future of palliative care has a border beyond its professional work. The communities and their circles of care must be part of the routine.

We need to use existing structures of our society to improve awareness about the idea of end-of-life care. Schools, churches, and other institutions need to be used to build compassionate communities. Football can be a very good promoter of that message if used with that objective.

The roulette game: Santiago explains about the patient’s journey.

How we scored a goal for palliative care … 

On Sunday, October 8, we held our World Hospice and Palliative Care Day inside a football stadium. It coincided with a birthday celebration of our local team, Sport Club São Paulo, which ensured maximum attendance! As well as a tournament for the children, we organised games to explain the meaning of palliative care. We introduced concepts such as pain scales, circles of care and trajectories but these were transformed into games, for example, coloured wheels, a game of roulette and a fishing game.

Through these games we began to explain these concepts with children and families. The lady pictured below is our community health worker who plays an important part in getting our message across. Judging by the engagement of the children and families and the conversations we had, I think we achieved our goal to spread the message of palliative care and to make the community a lasting part of it.

The fishing game: Maria Elena Rodrigues, community health worker with Estar ao Seu Lado, explains concepts of palliative care.

Recently in the UK, there were good examples of the potential of football to promote the idea of care. Bradley Lowery, a six-year-old football fan from Sunderland whose courage during his terminal illness united football teams and fans in raising funds and awareness, is the best example. In Brazil, we have passionate football fans who could apply the same idea to help other people.     

As Obdulio Varela said, we must look for victory when go onto the pitch. To win the game, we need to unite our efforts to help more people to have access to palliative care who need it.  And we need to use the community as a focus for palliative care – the community should be our captain and we should follow it until the final victory. Using the example of Uruguay’s national team in 1950, we can achieve better end-of-life care if we put the greatest effort into it. 

Links and resources

And for football fans, here’s a link (with English subtitles) to a video clip of the 1950 World Cup final and how the Uruguay team’s huge effort won the match!

We’ll be publishing exciting news from Kerala in celebration of  World Hospice and Palliative Care Day later this week on the EAPC Blog.

 

 

 

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Do you know how to access #palliativecare when you need it?

Continuing the Salzburg Questions series that encourages a global discussion about the key issues affecting palliative care.

Today, ahead of World Hospice and Palliative Care Day tomorrow (14 October 2017), Dr Stephen Connor, Executive Director Worldwide Hospice Palliative Care Alliance (WHPCA), explores the eighth question in the Salzburg Questions that asks Do you know how to access #palliativecare when you need it?

Dr Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance

The benefits of palliative care, and particularly early palliative care, for life-limiting illness, have been demonstrated (1) but do most people know how to access palliative care when they need it?

The data suggest not. The World Health Organization and WHPCA Global Atlas of Palliative Care at the End of Life reports that while 40 million people need palliative care annually, including 20 million at the end of life, only 14 per cent of that need is being met at the end of life, and less than 10 per cent overall. Less than one per cent of children who need it are receiving palliative care.

A report released today by The Lancet Commission on Global Access to Palliative Care and Pain Relief suggests that these numbers are as high as 61 million people needing palliative care annually, including 25.5 million at the end of life.

In only 20 countries is palliative care well integrated into the healthcare system, while 78 per cent of those needing palliative care live in low- and middle-income countries with weak health systems.

The theme of this year’s World Hospice and Palliative Care Day is: Universal Health Coverage and Palliative Care: Don’t leave those suffering behind!

This draws attention to the fact that palliative care is an essential and needed service and a defining feature of Universal Health Coverage It is impossible to have Universal Health Coverage (UHC) without universal coverage of palliative care.

So what exactly does UHC entail? Universal Health Coverage means that: ALL people can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.

Food distribution programme by WHPCA partner, the Centre for Palliative Care, in Korail slum, Dhaka, Bangladesh.

Central to UHC is a focus on equity: ALL people must be able to access these services. Equally important is the provision that seeking these services must not expose people and families to financial hardship or force them into poverty through paying for expensive treatments, travel to services or through loss of income by the person who is ill or their carers.

The sub-themes of World Hospice and Palliative Care Day are: Count, Care and Cost. These speak to the three dimensions that must be taken into account to realise UHC including palliative care: Political and population (count) – Who needs palliative care and who is covered?; Health services (care) – Which services are covered?; and Economics and financial protection (cost) – Who will pay for palliative care as part of UHC and how will they do this?

UHC is a target under Sustainable Development Goal (SDG) #3: Good Health and Wellbeing. There is currently great political momentum around the SDGs.

It is essential to keep palliative care at the forefront of these discussions so that as UHC is realised, anyone who needs palliative care will know what it is, how it could help, and how they or their loved ones could access it if they need it. 

Reference

  1. Temel JS, Greer JA, Muzikansky MA, et al. Early palliative care for patients with metastatic non-small cell lung cancer. N Engl J Med 2010; 363:733-742.

More about World Hospice and Palliative Care Day . . .

 More about the Salzburg Questions series . . .

  • Follow the global dialogue on Twitter. Using the hashtag #allmylifeQs, the nine Salzburg Questions are being debated throughout 2017.
  • Follow the EAPC Blog for more posts in the Salzburg Questions series.
  • Professor Irene Higginson will be discussing the ninth Salzburg Question on the EAPC Blog on Friday 10 November …
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Improving access to controlled essential medicines – report from the Commission on Narcotic Drugs meeting

Professor David Oliver, European Association for Palliative Care (EAPC) Board Member, and Dr Katherine Pettus, Advocacy Officer, International Association for Hospice and Palliative Care (IAHPC), report on the Commission on Narcotic Drugs meeting held recently in Vienna.

Prof David Oliver

Dr Katherine Pettus

The United Nations Commission on Narcotic Drugs (CND) in Vienna is holding a series of intersessional meetings this autumn to discuss how governments are implementing the many policy tasks they set themselves in the Outcome Document (OD) of the 2016 United Nations General Special Session (UNGASS) on the World Drug Problem.

Each intersessional focuses on one of the OD’s seven chapters. The Vienna Non-governmental Organisations Committee on Drugs invited David to serve as an expert panellist for Chapter 2, “Ensuring the availability and access to controlled substances exclusively for medical and scientific purposes, while preventing diversion.” UN member states and organisations (such as the World Health Organization, the United Nations Office of Drugs and Crime (UNODC), and the International Narcotics Control Board (INCB), as well as other civil society organisations) reported on progress and challenges in implementation of the recommendations contained in that chapter. View presentations here.

David spoke in his capacity as an EAPC Board Member and representative on the European Union Civil Society Forum on Drugs. Katherine contributed in her capacity as IAHPC Advocacy Officer while other civil society interventions, in the form of video presentations, came from Dr Sunita Panta, from the Nepal Military Hospital in Kathmandu, Dr Sami Alsirafy from the Palliative Medicine Unit at Cairo University, Egypt, and Busi Nkosi from the International Children’s Palliative Care Network.

David Oliver speaking at the meeting

David illustrated the clinical need for medication, particularly oral morphine, through patient stories, and global statistics, namely the increasing need for pain control as the world’s population ages and more people develop non-communicable diseases such as cancer. Europe, USA, Canada, Australia, New Zealand and Japan account for only 19 per cent of the World’s population but consume more than 90 per cent of the world’s morphine, leaving five billion people with little or no access to pain control. This is not because there is not enough raw material, or pharmaceutical products, but because multiple legislative and regulatory barriers, as well as educational and health system barriers, block access for patients and providers.

Responding to a question from the Canadian delegate regarding the opioid over-prescription and overdose crisis in that country, David emphasised the need to train healthcare professionals to diagnose and manage pain effectively, while minimising non-medical use. As a clinician, it is important that each patient is assessed individually, in his or her specific context. It is not about the substances, but about the patients, and their particular needs at a particular time in their illness trajectory.

This was an amazing opportunity to show representatives of countries from all over the world the need for controlled essential medicines in the management of pain and other symptoms together with the essential role of palliative care. It is essential for experienced clinicians to step up and do more advocacy, as member states want to listen to us, and we have the professional credibility they are looking for as they implement mandated public health policies. There was a very positive response in the room, with many countries showing that they wanted to improve accessibility and availability to opioids for the relief of severe pain to fulfil both their human rights obligations and meet the targets of the 2030 Agenda for Sustainable Development.

Countries such as Russia, Pakistan, Kenya, Colombia, Ecuador, Mexico, Spain, El Salvador, the Philippines, reported on the improvements that have occurred over recent years, while the US, Australia, Belgium and the UK reiterated their support for countries working to improve availability.

The challenge is to develop balanced policies that reduce non-medical use while improving rational availability that does not restrict effective patient care. 

Further reading

 

 

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Palliative care and neurology – world recognition at the World Congress of Neurology

Professor David Oliver, Chair of the European Association for Palliative Care (EAPC) Reference Group on Palliative Care in Neurology.

Prof David Oliver

The recognition of the role of palliative care for patients with progressive neurological disease has been increasing over the past five years. In 2016, the EAPC and the European Academy of Neurology produced a Consensus paper on neurological palliative care (1) (see my earlier EAPC Blog post). The EAPC now has a Reference Group on Neurology, looking at developing the links with neurologists. There has also been more discussion at neurology congresses and meetings and this was recently reinforced at the 23rd World Congress of Neurology in Kyoto in September 2017. There were more than 8,500 delegates from 121 countries and two scientific sessions were held on palliative care – the first time that so much time has been allocated within the programme.

More than 60 people attended the sessions. The first session focused on the principles of palliative care, introduced by Dr Rajagopal from India; cultural issues, particularly in Japan and Asia, by Dr Ogino from Japan, and end of life decisions in neurology presented by Professor Borasio from Switzerland. The second session looked at clinical issues – palliative care in children by Professor Führer from Germany, brain tumours by Professor Grisold from Austria and amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) that I presented.

David Oliver (right) with speakers who contributed to the palliative care session.

Palliative care also featured in several posters, including three from Sri Lanka and several from Japan. I presented two posters on the work of the UK National Institute for Care and Clinical Excellence Guidance on MND, particularly the role of multidisciplinary team working, and the use of augmentative communication. The communication poster was also selected as an e-poster; it was available throughout the congress and will be on the congress website in the future.

The presentations allowed a wide-ranging discussion on palliative care in neurology and stimulated debate from the audience. This was an amazing attendance from neurologists within this very large meeting in Japan. We were given the opportunity to share our experience and I am sure this will continue the ongoing discussion about palliative care.

We have heard that there will be further sessions at the next World Congress of Neurology in 2019 in Dubai and that the World Federation of Neurology is keen to continue sessions on palliative care in the future.

More about the author …

David Oliver is a board member of the European Association for Palliative Care and is an honorary professor at the University of Kent, Canterbury, UK. During his long career in palliative care, he has lectured extensively and has contributed to many books relating to neurology in palliative care.

Reference

  1. Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2016; 23: 30-38. doi:10.1111/ene.12889.

Links

 

 

 

 

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On the nature of our ‘Image Problem’: Initial perceptions of palliative care

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

Anna Collins, Research Fellow, Palliative Care, VCCC Palliative Medicine Research Group, Department of Medicine, University of Melbourne/St Vincent’s Hospital Melbourne, Australia, explains the background to her longer article selected as ‘Editor’s Choice’ in the October 2017 issue of Palliative Medicine. 

Anna Collins

Those of us working in palliative care are well aware of the increasing body of high-quality literature from around the world, demonstrating the benefits of early integration of palliative care in advanced cancer and their families.

In Australia, our patients and their families are privileged to have good access to world-class palliative care services. Yet, we know from our own research using local statewide population data, that access and availability do not always equal early integration.

In Victoria, the second largest state of Australia, while consultation with specialist palliative care teams is a reality for approximately 60 per cent of patients with cancer, first referral is still occurring late in the illness course (median 30 days from death) for the majority.

Despite increasing evidence for palliative care, this picture appears to be one of missed opportunities – whereby any benefits likely to ensue from early engagement may be missed for a large number of these patients and their families. So why does this gap between evidence and practice exist?

I was interested to explore the views of palliative care held by patients with advanced cancer and their families. What were their initial perceptions and understandings when this concept was first raised and prior to engaging in these services? Why not request a service that has been shown to make people feel better, and also enhance the wellbeing of their families?

Studies with health professionals often report anticipated patient and family response to palliative care as a barrier to communication and referral, though few studies have actually sought patient and family views.

I interviewed 30 patients and 25 family caregivers until data saturation and conducted a phenomenological analysis of this dataset. The findings of this work portray a number of themes that present narrow or poorly understood perceptions of palliative care.

Palliative care was perceived as a system of diminished care, which was thought of as non-medically focused, non-‘expert’, basic care, providing ‘just’ pain relief or comfort. It was associated with diminished possibility, perceived as a place to wait for death, given an end to earlier hopes for survival and now expected increasing dependency on others for care.

Palliative care was also associated with diminished choice, perceived as something that is forced upon you by the health system when no other choices for care remain.

We were interested to learn from patients and carers in this study that commonly feared aspects of dying – fears such as limited choices for care, increasing dependency, and being hospitalized – have come to be associated with the care of the dying, and hence be incorporated into understandings and narratives about palliative care.

As such, this study has implications for what I see as an important task ahead for palliative care – one that requires us to bring patient and caregiver understandings in line with the evidence for what ‘good quality care’ really means in the context of serious illness.

The next steps in our research involve setting out such an endeavour to develop a systematic approach to public education, aiming to reframe underlying community narratives from those of disempowered dying to messages of choice, accomplishment and possibility.

Read the full article in Palliative Medicine . . .

This post relates to a longer article, ‘Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers’, by Collins A, McLachlan SA, Philip J, published in Palliative Medicine, Vol 31 (9): 825-832. Article first published online: April 3, 2017. DOI:10.1177/0269216317696420.

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

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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The importance of palliative home care for older people

Sandra Silva Preciado gives a personal view of working as a physiotherapist in geriatric psychomotricity and palliative care in Bogotá, Colombia.

Sandra Silva Preciado at the 15th EAPC World Congress in Madrid, 2017.

In Colombia, the elderly have always received less palliative care because they have the preconception that it is normal for them to reach the end of their lives. Consequently, many families must care for their dying grandparents without the necessary experience or training. They are guided by love for their families, but often it is not enough to provide the necessary support. Therefore, when the person is approaching death relatives are not prepared to face it. They turn to the nearest hospital in the hope that their loved one can be revived ‘heroically’ and they can spend more time together. But in practice, many grandparents die alone in the emergency room or the intensive care unit of the hospital.

I have seen several cases of older adults in similar situations. I remember perfectly a Sunday in December when I worked in a clinic and did my shift in the intensive care unit. In cubicle number one was a 94-year-old patient admitted as an emergency after presenting with acute myocardial infarction. She had been resuscitated and subsequently extubated at dawn and was already in a good, general condition. When I entered her cubicle she was dressed and sitting on her bed. I greeted her, introduced myself and asked, “What are you doing?” She replied:

“Waiting for the time to let my children in and take me home because I’m going to die, and they won’t let me die here, they give me electric shocks and well, how can one die in peace?”

Given the importance of saying goodbye, not only to the life that you have built with so much effort, but also to loved ones, I consider that palliative home care in the elderly is the cornerstone for a good death. But the reality in our country is that we have an ageing population and an increase in chronic pathologies. Many of the caregivers of the elderly are themselves pensioners who take care of their relatives because they cannot afford to pay for private care. Nonetheless, they dedicate themselves to this work, regardless of the implications. For example, caregivers who are not trained do not know how to care and ensure a patient’s wellbeing and comfort, or the importance of the financial implications for both the health system and the family, not to mention how to address the physical and psychological pain of the elderly.

The reality of palliative care in Colombia is shown below. While older people, a growing population, are not specifically mentioned attention is drawn to the many illnesses that may affect them.

“In Colombia, there are an estimated 200,000 new cases of cancer and non-cancerous diseases such as Dementia, Parkinson’s, Amyotrophic Lateral Sclerosis, Multiple Sclerosis, Chronic Kidney Disease, AIDS, Liver Failure, Congestive Heart Failure and Severe, Chronic obstructive pulmonary disease. These diseases cause between 100,000 and 120,000 terminally ill patients requiring palliative care,” as highlighted by Juan Carlos Hernández Grosso, Director of the Palliative Care Unit Presentes in Bogotá and Chair of the Palliative Care Association of Colombia (ASOCUPAC). 1

Hernández Grosso also states: “In the Quality of Death Index … Colombia, despite having a palliative care law (Law 1733 of 2014 that is yet to be regulated), has a low supply of palliative care – few specialized professionals. – and a high demand for these specialists. This … added to the difficulties of availability of opioids for the relief of pain, leaves us in the ranking of The Economist in a dishonourable position, 68 out of 80 participants, which means that we are from [one of] the countries with the worst quality of death.” 1, 2

In working at home with an older adult, I have noticed that people are looking to me to find alternative therapeutic activities that help to change the environment. By providing support at home, it is possible to improve the management of time and quality of life that has often become monotonous and depressing, such as being bedridden. In particular, I’ve noticed the attitudes of others – relatives, caregivers and friends – who often act as if nothing has happened and ignore the preferences or thoughts of the elderly. Moreover, sometimes they believe that it’s enough just to supplement the basic daily activities and leave aside the individualism of the person. For example, they forget the simple pleasures that could brighten the day for an older person, such as listening to their favourite music or reading a book that they had saved to read after their retirement.

The therapy I offer fuses physical therapy, Shiatsu, geriatric psychomotricity and palliative care. I also explore the use of complementary or alternative therapies such as assisted therapy with dogs, aromatherapy, essential oils, vibration, quartz, music, reading, platonic solids and the pendulum, according to the needs of each individual. The session may evoke painful or happy memories and I will help the individual to use their physical, psychological, emotional and spiritual strengths to generate a better quality of life.

The message that I would like to leave is the importance of carrying out activities according to the needs of the elderly, especially in Colombia. What is fundamental, is a holistic philosophy that involves the body, the emotional, the psychological and the spiritual needs – for the elderly, the caregivers and the family. Thus, change can be created that facilitates the relationship between us all and offers inner peace at the moment of death.

I would welcome contact with others working in physiotherapy in palliative care, particularly with older people. Please email me here.

References and further reading

  1. Villate A, Colombia se raja en el cuidado de pacientes con enfermedades. Las 2 Orillas.
  1. The 2015 Quality of Death Index – Ranking palliative care across the world. A report by The Economist Intelligence Unit, October 2015.

Pastrana T, De Lima L, Pons JJ, Centeno C (2013). Atlas de Cuidados Paliativos de Latinoamérica. Edición cartográfica 2013. Houston: IAHPC Press. Download a copy here.

 

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Doctors, nurses; do you want to die the way your patients die?

WHEN THE TIME COMES TO TELL OUR STORY, WHAT WILL WE SEE?

Continuing the Salzburg Questions series that encourages a global discussion about the key issues affecting palliative care.

Today, on International Right to Know Day (28 September) Dr Bruce Chernof, President and Chief Executive Officer of The SCAN Foundation, California, USA, explores the seventh question in the Salzburg Questions that asks: Doctors, nurses; do you want to die the way your patients die?

Dr Bruce Chernof

Around the world, healthcare providers are trained to be objective, rational, and clinical at the bedside. Long white coat, white dress, white smock, maybe a white hat – they are just signifiers, tropes, costumes in a performance, where we are the ‘good guys’ here to right wrongs and cure the sick. And of course, following the Hippocratic Oath: ‘First, do no harm.’ So this is what we do, day in, day out, with dedication and compassion, but always through that dispassionate clinical lens. Until . . .

When the tables are turned, and the provider is the patient, what seemed like an uplifting virtuous drama reads much more like a comedy, or worse, a tragedy. It is time for all healthcare providers to take a deep, introspective look at our practice. Are we caring for the whole person or simply going about the business of treating patients? Despite all of our progress to transform healthcare delivery to make it more holistic, it remains utterly biased toward the antiseptic and technical aspects of treating patients. Healthcare prioritises safety and cure above all else, yet in our own lives we are far more likely to prioritise autonomy, dignity, and happiness. We have an enormous number of technical measures to track the quality of medical services, yet almost no measures for quality of compassion or respect. All healthcare providers secretly pray for quality of life for ourselves, balanced with technical quality of care. So here is the little secret I have learned over three decades: all our patients want the exact same thing.

We need to break the bonds both of incrementalism and lofty strategic planning that seem to be the brick walls and iron bars that serve as our stage’s proscenium and backdrop. Endless, minute Plan-Do-Study-Act cycles, policy reforms for one more new payment code, or dramatic 10-year global targets may be part of the solution, but these are not the answer.

We need to commit to delivering care to every person and every family exactly as we would want to be treated. For as we all know, autonomy and dignity are not delivered through the sharp prick of an IV catheter or a light blue gown that doesn’t quite close completely at the back. When the time comes to tell our story, what will we see? Virtuous drama with an uplifting ending? Comedy of errors? Or simple tragedy? The choice is ours.

Links

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