Barry Ashpole Media Watch #496

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

International Publications:

Doctor hits the road to deliver palliative care to Toronto’s homeless

ONTARIO | CBC News (Toronto) – 17 January 2017 – Dr Naheed Dosani is a palliative care doctor in Toronto, but his patients are in homeless shelters, drop-in centres and even on the streets. He dispenses much-needed health care to the 5000 vulnerable and marginalised people, with many at the end of their lives. Dosani says the palliative care team’s visits are not just a check-in, they are building bonds and relationships over time. Dr Simon Colgan states that palliative care is a human right for everybody in Canada, has also set up a similar mobile service. https://goo.gl/xn8gzc

Who will care for the caregivers?

THE NEW YORK TIMES | Online – 19 January 2017 – According to AARP and the National Alliance of Caregiving, nearly a quarter of caregivers are now millenials, equally likely to be either male or female, with a third providing more than 21 hours of care per week. One third of them hold full-time jobs, while a quarter work part-time. This volunteer army is put at great financial risk, even worse, perhaps, is the physical and emotional toll of extended caregiving. For many, caring for a loved one provides tremendous purpose and fulfilment, deepening relationships, then it seems that the goal should not be to reduce family caregiving but to reduce its burdens. https://goo.gl/leNlrx

Lawmakers should support improving palliative care access

MINNESOTA | The Mankato Free Press – 15 January 2017 – The American Cancer Society Cancer Action Network in Minnesota is working on legislation to establish a state advisory committee to identify barriers preventing access to PC. The panel’s mission would be to help lawmakers identify gaps in health systems, consumer education, workforce development and promote solutions. Making sure Minnesotans have access to such a complete form of care is a cause every lawmaker should be able to support. https://goo.gl/8z3Ztu

A Tender Hand in the Presence of Death

From Pallium India Newsletter

Heather Meyerend is a home care hospice nurse visiting sixteen to twenty patients once a week each. She sees her work as preparing and accompanying a patient partway down the voyage he is to undertake. Like most hospice workers, she feels it is a privilege to accompany the dying and their family at their most vulnerable and helpless times.

Her visit may be the high point of the day for the patient, who may not be able to get out of bed, or for whoever is taking care of the patient, who may not have left the house or seen anybody else for a day or two; either or both of them may be going a little crazy and may badly need interruption or variety of any kind, ideally someone different to talk to. So Heather moves slowly; she sits down; she delays; she lingers. Dying can be long and bewildering, lonely and painful, frequently undignified, and consumed by pressing and unpredictable and constantly changing and multiplying needs. It’s a relief to have someone around who understands what’s going on and what may happen next. Hospice believes in caring not only for the patient but also for the family, and tries to address psychological and spiritual needs as well as physical ones, providing social workers and bereavement counsellors, music therapists and chaplains, who work together as a team and consult one another frequently. Nonetheless, patients tend to resist hospice, because it sounds like a death sentence, and it is: entering hospice means giving up on curative treatments, and you qualify only if your doctor believes that you have less than six months to live. enever Heather entered a patient’s home for the first time, she knew that she was walking into a long, long, complicated story that she understood nothing about, a story that was just then reaching its final crisis. She was extra alert on those first visits, extra careful, trying to figure out what was going on—the conflicts and rivalries between members of the family, tension over who wasn’t doing enough, who was doing too much, unresolved bitterness, and nearly always grief and anxiety and fretting about how to take care of the patient and what to do.

Read the full article here.

WHO releases new guidance for Planning and Implementing Palliative Care Services

From eHospice

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The World Health Organization in Geneva has just released a 91-page guide to help countries wishing to develop palliative care services.

The guide is titled “Planning and Implementing Palliative Care Services: A guide for program managers”. It is developed is in response to the passage of the World Health Assembly resolution on palliative care in 2014. Useful resources inside includes:

  • An overview of palliative care services
  • A guide to establishing palliative care services in various settings
  • The necessary components of a comprehensive approach to palliative care
  • Many resources and tools and
  • A number of useful appendices on medicines, equipment and supplies, and sample curricula for volunteers, medical doctors, and clinical officers

Read here for the full article.

The guide can be downloaded from the WHO website at: http://www.who.int/ncds/management/palliative-care/palliative_care_services/en/

My job in palliative care let me practise social work as it is meant to be

From Pallium India Newsletter

“It has been an opportunity to practise social work as it is meant to be – empowering, enabling but not afraid to face and challenge conflicts and difficulties both within families and communities but in wider society. A far cry indeed from the care management model that most adult social work has now been reduced to.”

Palliative care social worker Suzy Croft had come into this line some 26 years ago, when the term “palliative care” was unknown. She was part of a multi-professional team that supported people with terminal cancer and their families. Though in the past few years, Suzy faced difficulties while helping her clients in need of support from the state, she found that families and friends remain the greatest support for people with life-threatening or life-limiting conditions.

She feels that “palliative care social work has been a wonderful field in which to work” as it involves working with other professionals, but most of all, because it provides an opportunity to work with a diverse group of patients and their families. Life-threatening and life limiting illnesses are no respecter of class, income, age, ethnicity, gender, sexuality, religious belief, immigration status, mental health or learning difficulties. Palliative care social workers offer a wide range of support to patients and families from practical help and advice around income maintenance and debt counselling, help with housing and accessing other services through to advocacy, individual and family support and counselling and help for bereaved adults and children.

Read the full article here.

It was a privilege to care for my brother: Nola’s story

pcaFrom Palliative Matters

A story of a sister journeying with her brother towards life’s end..

When he was dying on the Saturday morning, I sat with him. I had a lovely chat with him, telling him how proud I was of him and that I’d look after his animals. I always wanted to say goodbye but I didn’t want to choose the wrong moment. I told him to say “Hi” to mum and dad. It was very special to have that moment with him. He was very peaceful.

Pete was into beer and motorbikes. There were 22 antique motorbikes at the funeral and we had the wake in the pub. It was exactly what Pete wanted and it was a lovely time of closure for me. Steve and a few of Pete’s other friends were able to choose where Pete would be buried and they chose a spot under a tree so that they could pull up and have a beer with Pete. They were grieving too. It wasn’t just me grieving; it was the whole community.

Read the full article here.

Palliative care: financial catastrophe avoided?


Impoverishing health expenditure

A World Health Organization and World Bank Group report shows that 6% of the population, across 37 countries, was tipped or pushed further into extreme poverty because they had to pay for health services out of their own pockets. When the study factored in a poverty measure of $2/day, 17% of people in these countries were impoverished, or further impoverished, by health expenses.

Read the full article here.

How palliative care helps families avoid financial catastrophe?

In the face of a life-threatening disease, what are you thinking of? The acute pain from the disease, the high costs of the treatment, the financial strain the treatment will cause to your family? A financial catastrophe can be avoided when one knows the realities of the situation. The huge debts which may have been incurred from the extensive treatments, will leave most families struggling financially. Instead of pursuing futile treatments, pain relief and symptom control are administered to let the patients feel better.

What is palliative care?

Palliative Care aims to improve the quality of life of a patient facing a life-threatening illness and his family. It is an approach of addressing the physical, emotional and spiritual needs and practical concerns of patients. Palliative care also emphasises on pain relief and symptom control, and through that, increases the quality of life for both the patients and care-givers.

 “No one should die alone… each human should die with the sight of a loving face.” – Mother Teresa

Engage communities and train carers to provide end-of-life care: UK expert

pcaFrom Palliative Matters

In this article, Dr Richardson, joint chief executive of St Christopher’s Hospice and an honorary professor in the International Observatory on End of Life Care at Lancaster University, shares some of her thoughts.

Presenting at the Palliative Care Victoria conference today, Dr Heather Richardson said while the UK sat at the top of the 2015 Quality of Death Index, it “had done appallingly” in terms of ensuring access to care. She said 100,000 people every year don’t receive palliative care even if they would benefit from it.

“Our focus is on the person in our bed or in front of us and we fail to remember the many who are waiting to get in, or who have never been referred. That is one of our blind spots.”

Dr Richardson said she saw value in shifting focus from lobbying for increased funding, to changing public perceptions of palliative care and engaging and up-skilling local people and communities who could contribute to end-of-life care.

Read the full article here.

Palliative Nursing Conference 2016 in Finland

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Dear friends

A Palliative Nursing Conference is being organized for the first time in Helsinki, Finland August 23rd – 26th 2016. The Finnish Nurses Association, Fioca Education and Publishing Company, the Finnish Association for Palliative Care and Oncology Nursing Association of Finland has
will like to invite you to take part in the conference. The themes of the conference span the following complex issues: Patient and family at the center of Palliative care; Encounter, grief and empowerment; Developing and innovations; Quality and evaluation.

The early bird registration deadline ends on 30 April 2016!

For more information, please visit their website here.

ehospice 2015 year in review

Written by: Kate Jackson, editor of International edition of ehospice

The international edition of ehospice would like to wish season’s greetings to you all and to celebrate the work that has been done in hospice and palliative care in 2015.

Sharing stories about care that transforms people’s lives is the most inspiring thing that we do at ehospice. This year in October we shared stories of people and their families who had been cared for by Hospis Malaysia. One of these people, Raja, talked about how socialising at the hospice can fuel positivity and good spirits. Jose de la Cruz, a WHPCA staff member shared his personal story about the death of his mother in the Philippines –a moving story of the profound effects of dementia and bereavement.

World Hospice and Palliative Care Day took place in October with a focus on hidden lives and hidden patients – an important issue for everyone – wherever you are based. If you reach the furthest first, you will have the most benefit for everyone. No-one must be left behind. On 5 December, patient’s solidarity day took place, where people around the world declared their human right to health. This day is growing in scale and influence. Our voices as patients, carers and citizens must be heard.

The Little Stars films were premiered in Kuala Lumpur in October, bringing a much needed focus on children and their families affected by life-limiting illness. Lucy Watts, a powerful and inspiring advocate, became the global youth ambassador for the international children’s palliative care network.

Global advocacy continues. In September, the global goals were agreed including a global goal on health. International palliative care organisations published a report on palliative care and the global goals on Universal Health Coverage Day on 12 December. You can read about the report on ehospice. Palliative care must be included in the implementation of the Global Goals, otherwise the health goal cannot be achieved.

In May, meetings were held at the World Health Assembly on children’s palliative care and palliative care in francophone countries. The year has also been full of preparations for next year’s United Nations General Assembly Special Session on the World Drug Problem. It is important that balance is achieved in drug policy and that palliative care medications are available for all who need them.

While there has been progress and incremental steps forward, the need for palliative care remains huge. An estimated 40 million people need palliative care around the world, and yet millions still live and die in unnecessary pain and distress. There is much more to be done to develop a global citizen’s movement which demands the care that many of us need now, and many more of us will need in the future.

We have seen and read about the energy and spirit of people around the world to make the lives of others better. Therefore we can enjoy the end of the year with excitement and confidence in what we can achieve together next year. We know that palliative care works; we know that it transforms people’s experience of living and dying; we know that, together, we can make good care a reality for everyone.

Wishing you all the best for 2016.

Five scholarships to the 2nd International Conference of the International Children’s Palliative Care Network

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The International Association for Hospice and Palliative Care (IAHPC) is pleased to announce that it will be offering scholarships to help support the travel of palliative care workers in developing
countries to the  2nd International Conference of the International Children’s Palliative Care Network (ICPCN) in Buenos Aires, Argentina from May 18-21, 2016.

Applicants must be living in Low and Middle Income countries, be current members of IAHPC, and actively working in palliative care. Applications from pediatricians and other fields of medicine, nurses, psychologists, pharmacists and other disciplines are welcome. If you wish to apply and are not an IAHPC member, you may join or renew through the IAHPC website

Preference will be given to:

  • Applicants who have not received an IAHPC grant in the past three years
  • Applicants with accepted poster or oral presentations in the Congress
  • Applicants working with children with palliative care needs

Grantees will be selected by a committee of IAHPC board members and ICPCN trustees.

Deadline to apply is January 31st, 2016. Results will be announced during February 2016. Additional information about the conference can be found in the ICPCN Conference website

iPDF – International Paediatric Palliative Care Discussion Forum Online Now!

The Asia Pacific Hospice Palliative Care Network (APHN) launched its first paediatric palliative care initiative, the International Paediatric Palliative Care Discussion Forum, abbreviated as the iPDF, on 20 August 2015.

Conceptualized and implemented by the Paediatric Palliative Care Special Interest Group (PPC SIG) of the APHN, the iPDF will be a free resource platform for all paediatric palliative care workers to ask questions and participate in the latest discussions in children’s palliative care, anytime, anywhere online.

How it all started

Many paediatric palliative care workers in the region are working in isolation. Many cannot travel overseas for training and education. They have no one to ask if they run into trouble. Recognising the need to provide a platform that provides reliable help, is readily accessible, free and easy to use, the PPC SIG decided to fill this gap and start an online resource.

More than just a forum

The iPDF aims to become an online community for practitioners from different disciplines who work in the field of children’s palliative care, to provide networking and mutual support. In addition to being an interactive platform, the iPDF is moderated by a multidisciplinary panel of experts. Participants can be sure that their questions will be responded promptly by the relevant content specialists. Everyone can certainly look forward to many fruitful discussions with equally passionate colleagues around the globe, which has not been possible, until now.

Building capacity in a virtual environment

In conjunction with ongoing discussions, additional articles will be released every few months. These articles will include interviews with our moderators, who will share their own perspectives on the latest news and debates. Summaries of the most talked about topics, most shared answers, and further discussion on interesting projects within iPDF will be sent to participants, to keep everyone up to date on the hottest issues in the field.

Moving forward

The iPDF will continue to engage participants through activities built around this platform. We look forward to the iPDF becoming a resource for all paediatric palliative care workers, not just as a knowledge base but also a source of inspiration.

Join us!

Find out how to sign up for the forum at the APHN PPC site!

The iPDF is hosted on the Google platform. If you have a registered Google account, you may join the forum directly here.

The iPDF is an initiative by the Asia Pacific Hospice Palliative Care Network. If you will like to help contribute to the initiative or other activities in the APHN, please feel free to contact Joyce at aphn@aphn.org or +65 6235 5166.

International Paediatric Palliative Care Discussion Forum (iPDF) – Starts today!

Promotional PicDear fellow palliative care colleagues

On behalf of the Paediatric Palliative Care Special Interest Group (PPC SIG) of the Asia Pacific Hospice Palliative Care Network (APHN), we will like to invite you and your colleagues to join us as we launch our very own discussion forum focusing on children’s palliative care.

Support us by sharing this post with your friends and participate!

To join the forum, all you have to do is

1. Sign up for a Google account (if you do not have one)
2.Click on this link https://groups.google.com/forum/?hl=en#!forum/aphn_ipdf!

Our forum is moderated by an international multidisciplinary group of experts which we have gathered to help answer any questions that you may have regarding children’s palliative care.

Click here to find out more.