Families in Crisis

This article originally appeared on eHospice.

Family doctors play a crucial role in supporting patients and families through life events, including death and bereavement, even without specialist training in palliative care. Many patients in India do not access primary care, due to the differences between states in economic resources and availability of health care workers. This has a detrimental effect on health outcomes and meant that patients and families living with terminal illness usually lack the support of their family doctor.

The palliative care teams are unable to treat every family member as their own patient as their resources are stretched. Suicide is a consequence of the huge strain families are under because of chronic or terminal illness. In India, 25% of documented are as a result of family problems and another 20% due to illness. The author suggests that for the current situation in India to improve, there needs to be better access to essential pain medications and implementation of government pain management and palliative care policies.

Read the full article here.

How palliative care helped me make an important decision in my life

A revisit to this article to start off the new year. More people need to know about palliative care and its benefits!

ehospice, with permission from the Journal of Pain and Palliative Care Pharmacotherapy, is drawing on narratives to highlight the effect of pain on people and families, and the value of palliative care and access to controlled medications for pain management in addressing this issue. Read the full article here.

Why a person’s death should not be painful

Republished with permission from ehospice

“For patients, the experiences of palliative care are those that mark out their life quality. These are activities that are memorable merely for the absence of pain or suffering, but integral to the quality of life experienced. Where we can’t promise painless days, I believe that everyone should able to access good palliative care that they need and if they need it specialist palliative care. Care that includes practical support, from the cinema trips described, to organising a disabled badge or mowing the lawn, can help reduce stress and therefore pain, returning patients to a more comfortable psychological state, which, as I mentioned earlier, can be just as important in decreasing experiences of pain….read more

Cambodia Tales: A word about waste

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Looking through the lenses of Cambodia society, the writer points out the trend of unnecessary over-prescription of medicines for patients, in this day and age. Perhaps the question to ask ourselves as palliative care workers is “Does taking this medication help the patient NOW, if the medication is meant for controlling certain chronic conditions for the next 10 years?” Palliative care focuses on improving quality of life, and reducing the number of tablets they take may help them improve their appetite, and also feel better emotionally. Can you imagine having to swallow 10 tablets, 3 times a day?

“It has been estimated that in the UK over £2 billion a year is spent on unnecessary, expensive or inappropriate treatment. Furthermore, it is thought that around £300 million is spend by the NHS on wasted medications, as often happens when a person’s medication regime is changed and medicines get stockpiled at home, or when repeat prescriptions are issued without review.

To put this in perspective, the gross domestic product for the whole of Cambodia last year was around $50 billion (approx £37 million).

One of the main ways in which waste can be reduced is through adequate support at the point of prescribing. It is also essential that the effectiveness of medicines, and any adverse effects, are closely monitored, as people may decide to stop their medicines if unsupported.”

Read the full article on ehospice here.

**Opinions expressed in the APHN blog reflect the views of individual authors, and do not represent those of the editorial team or the Asia Pacific Hospice Palliative Care Network.

Compassionate Korail: young people learn about palliative care

From eHospice

The children’s fair held in the Korail slums attracted at least 1000 children to attend, where various NGOs (non-government organisations) opened up stalls to showcase their activities. Momotamoy Korail (Bangla for ‘Compassionate Korail’), the community palliative care centre, had a stall at the fair where children could find out about palliative care for older people in the slum. Their stall provided information about palliative care in general, paediatric palliative care, and the Compassionate Korail project activities.

“…Another one said he had seen us with a doctor visiting his uncle’s house. When we started, the people of Korail didn’t know where we came from, or why we came to Korail slum. But today the story is changing, while the Palliative Care Assistants and volunteers walk through the slum, many of them know that they are from and for ‘palliative care’ and do something for the incurably ill dying patients.

We all are waiting for the day to come when the slum people will come forward and say that they want to run a palliative care centre by themselves, like they run a number of community schools, mosques and take initiatives for community facilities like safe water supply and electricity…read more

Fallen Angels – Mahesh’s Story

From the eHospice newsletter

Mahesh was diagnosed with bone cancer soon after his birth and was brought to the major cities in southern India, to seek help and treatment. In these cities – Chennai, Hyderabad, Vellore and Bangalore – were established pain and palliative care centres, none were referred to Mahesh’s parents. By the end of four years, the family had racked up a huge debt from the medical treatments and had sold everything they owned.

Mahesh’s parents, together with personnel from palliative care teams from Hyderabad and Tricandrum, watched him pass away a day after his fifth birthday, hooked onto machines and in pain. A senior palliative care physician was reported feeling “ashamed” as the child was not referred to them despite being next to a hospital Mahesh was taken to.

Read the full article here.

New tool to create custom opioid consumption graphs

This article originally appeared in ehospice

The Pain & Policy Studies Group (PPSG) is excited to announce the addition of a new tool on their website to explore opioid consumption data and updated global, regional, and national consumption data for fentanyl, hydromorphone, methadone, morphine, oxycodone and pethidine. This new tool, custom consumption graphs for opioid medicines, allows users to select, customise and create charts of the opioid consumption data and download them as either an image file (png) or a PDF for use in presentations or publications.

This new tool has become a part of a collection of tools on the PPSG website which can be used to interactively explore these data:

  • an interactive global map allows users to select the opioid medicine and year (1964 – most recent) to display, providing an immediate visual image of the variation in consumption of opioids throughout the world, and
  • an interactive opioid consumption chart allows users to explore the relationship between opioid consumption trends for a particular country and other country characteristics such as the Human Development Index

You can explore these data by creating three types of charts and selecting the countries, regions, medicines, years, etc. in which you are interested.

Palliative care for children with HIV and AIDS

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This article originally appeared in ehospice

Access to children’s hospice and palliative care services makes a difference to the care of children with HIV. Far too few children have this access.

The World Health Assembly Resolution 67:19 calls for the integration of palliative care services for children into health systems and for collaboration between health services and civil society.

Until we have adequate services, trained healthcare workers, adequate community services and access to medicines – including ART and pain medicines – in paediatric formulations, children will continue to suffer.

Programmes in developing countries such as Malawi and India[1] have shown that effective palliative care can be provided to improve the child’s quality of life even when resources are limited.

Palliative care is an essential part of the response to HIV for children, and we should continue our advocacy efforts until their right to healthcare, including quality palliative care, is realised.

Read the full article on ehospice.

References

[1] ICPCN Report on Developing Children’s Palliative Care in Malawi and the Maharashtra District of India www.icpcn.org

Moments of Life campaign offers first video and story translated into Mandarin Chinese

This article originally appeared in ehospice

The US National Hospice and Palliative Care Organization has released a video translated into Mandarin highlighting how hospice care can help patients and families navigate end-of-life challenges.

The story features an 88 year old Brooklyn resident originally from China matriarchnamed Sheung Lung Luk. Grandma Luk, as she came to be known, received hospicecare after being diagnosed with terminal lung cancer. It was under the care of MJHS Hospice and Palliative Care that Grandma Luk’s pain was stabilized and she was able to enjoy doing the things she loved most.  As seen in this story, the family was particularly relieved to have the support of a hospice nurse who could communicate with them in Chinese.

This video is the first in the campaign to be translated in Chinese, and is now showcased on the “Moments of Life” website.

Read the full article here.

Joan Marston to stand down as ICPCN Chief Executive in November

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This article originally appeared in ehospice

Joan Marston, Chief Executive of the International Children’s Palliative Care Network for the past six years, has announced her retirement from the position but assures that she will continue to work as a consultant and as a Global Ambassador for ICPCN and children’s palliative care. Joan has worked in palliative care for the past 27 years and specifically in children’s palliative care for 17 years.

The ICPCN has grown enormously under Joan’s guidance and is now acknowledged as the leading global organisation advocating for and working towards the development of children’s palliative care services worldwide. In her capacity as Chief Executive, the organisation has gone on to achieve a number of important victories in the international field, including the inclusion of children’s palliative care in the 2014 Resolution on Palliative Care passed at that year’s World Health Assembly in Geneva and the holding of a Side Event on children’s palliative care at the 2015 World Health Assembly.

Mary Callaway, former Director of the International Palliative Care Initiative (IPCI) of the Open Society Foundations and a long-time supporter of ICPCN writes:

“… I think it’s fair to say that ICPCN would not be where it is today without Joan’s total dedication and leadership, bringing individuals and organizations together to better serve the needs of children and make real change possible.

Whether she is helping set up hospices in remote villages in India and Africa or meeting with leaders at the United Nations, Joan represents the very best of ICPCN and certainly no one can under estimate what she has done to develop the organisation and develop the field of paediatric palliative care.

Sharing her thoughts on her decision to stand down as the Chief Executive of ICPCN, Joan had this to say:

It has been a wonderful, exciting journey, leading the ICPCN from its’ beginning in Seoul…

… As many know, my passion is especially for children in the most vulnerable situations – those in developing countries, living in poverty and affected by humanitarian situations. So as I change my role to become a Global Ambassador for children’s palliative care, I plan to focus on advocating for better access to palliative care particularly for these children; to support development of children’s palliative care programmes; and to encourage the involvement of a truly global community of children’s palliative care Champions.

The role of ICPCN Chief Executive will be passed on to the present ICPCN Director of Research and Education, Professor Julia Downing. She will take up this position from 1 November 2016.

Pain – when it affects the person

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This article originally appeared in ehospice.

The theme of World Hospice and Palliative Care Day 2016 is: ‘Living and dying in pain: It doesn’t have to happen’. ehospice, with permission from the Journal of Pain and Palliative Care Pharmacotherapy, is drawing on narratives to highlight the effect of pain on people and families, and the value of palliative care and pain control in addressing this issue. Follow the life story R.K. and the effect of pain. Click here to read the full story.

Here are some takeaways by the author:

  • Unrelieved pain has a devastating effect on the sufferer.
  • One should look for pain by asking the simple, direct question.
  • Most of the time, pain can be relieved by relatively simple means.
  • When pain is relieved, the whole attitude of the patient changes.

75% of the world population does not have adequate access to controlled medications for pain relief. As a result, millions of people suffer from pain which is avoidable and could be managed with proper access to the correct medications. Find out how you can play a part during the World Hospice and Palliative Care Day by visit the WHPCA website.

Cataloguing the archives of Dame Cicely Saunders (1918-2005)

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Dear friends

Please help to share a new e-resource link, Dr Dame Saunders’ online archives, to be added to APHN’s resource page under “Publications”!

To mark what would have been Dame Cicely Saunders’ 98th birthday, archivist Chris Olver writes for ehospice about a recent project he led to catalogue Dame Saunders’ archives, which are housed at King’s College London.

The project began in January 2015 with a survey of the three accessions of Saunders’ papers deposited at King’s between 2006 and 2009. The main task was refining the existing box lists and working out an arrangement for the overall collection.

The catalogue can be viewed on the King’s College London website. It contains correspondence, notes, reports, research data, diaries, photographs and artefacts relating to the life and work of Dame Cicely Saunders from 1918-2005. It includes case notes, correspondence, research data, interview transcripts, history of the hospice movement, notes and drafts for lectures, talks, as well as recordings of talks and interviews by Saunders…read more

This article originally appeared in ehospice