How to uphold patient dignity at the end of life

This article is from Palliative Matters.

According to Dr Harvey Max Chochinov, international expert in dignity and palliative care, dignity is not just a concept associated with managing bodily functions but also a dying person’s perception of how they are seen by others. For people who are dying, they feel a loss of dignity when focus on their illness or disease leaves them with the sense they have been defined generically as a patient and all they have.

The research also shows significantly higher rates of depression, anxiety and feelings of hopelessness in people experiencing a loss of dignity and healthcare workers have a responsibility in understanding the impact of their interactions with patients.

Read the full article here.

 

 

 

 

Rosalie Shaw Travelling Scholarship for Asia Pacific Hospice Conference 2017

Rosalie Shaw Travelling Scholarship

Dear APHN members

Greetings to you all!

APHN is pleased to invite applications for the APHN Rosalie Shaw Travelling Scholarship for the Asia Pacific Hospice Conference in 2017. This scholarship was created in honour of our former Executive Director, Dr Rosalie Shaw, to enable APHN members from resource limited countries to attend the Asia Pacific Conference. The successful applicant will receive support of up to SGD 2,200 to fund the conference registration, travel and accommodation.

Eligibility Criteria

  • Must be a current individual member of APHN
  • Nomination supported by 2 other APHN members
  • Display leadership qualities and works in a palliative care service
  • Contribution to palliative care development in your country of work or residence
  • Must submit an abstract for the APHC
  • Must submit a report on the benefits of attendance within 3 months after attending APHC
  • Has not received any grants from APHN for the past 5 years

Preference will be given to members who have not received sponsorship of any kind for attending regional and international palliative care conferences.

Applications must be submitted online here by the application deadline 31 January 2017.

The successful applicant will be notified by email. The disbursement of monies by the APHN Secretariat will be on a reimbursement basis on receipt of original receipts and/or invoices.

7th Association of South-East Asian Pain Societies Conference 2017

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The 7th Association of South-East Asian Pain Societies Conference (ASEAPS 2017) will bring together all of the region’s clinicians, scientists, nurses, pharmacologists and researchers under one roof from 16 to 19 February 2017 in exciting Yangon with the common purpose of providing a better quality of life to our patients living with long-term pain that may have no cure – without surgery and a heavy reliance on medication.

Through sponsored & plenary symposia, free papers & poster sessions and pre-conference educational sessions, ASEAPS 2017 will keep all delegates on the leading edge of the rapidly developing field of pain management as our distinguished internationally renowned experts teach, share, discuss & debate all the latest developments in this important medical subspecialty.

There has never been a more exciting time to visit the extraordinary country of Myanmar. Please join them and help them to achieve their goal of providing patients with the opportunity to lead full, pain-free lives.

Visit www.aseaps2017.com for more information.

People with Alzheimer’s need more palliative care support

From Palliative Care Australia Press Release

Dementia and Alzheimer’s disease are the second leading causes of death in Australia, but patients often miss out on palliative care as they aren’t recognised as having a terminal condition.

Dementia is different from other terminal conditions because of the long, unpredictable course of the disease, difficult issues around capacity for decision making, difficulties in communication and lack of community understanding of the disease as a life limiting illness which requires palliative care.

Because of complications such as these, people with dementia may be unaware of, or denied access to, palliative care services.

Read the full release here.

Presentations available for download from 5th International African Palliative Care Conference

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Download the presentations from the 5th International African Palliative Care Conference, hosted in Kampala, Uganda from 16-19 August today! It is FREE!

The conference programme is available here, with access to corresponding presenter Powerpoints and video presentations, outlined below:

From ehospice

 

Communication – Paediatric Longitudinal Assessment of Needs (PLAN)

content%202%20-%20jul%20forum1From Lien Collaborative for Palliative Care Newsletter

The Paediatric Longitudinal Assessment of Needs (PLAN) framework, designed and used by the team to facilitate interdisciplinary communication during meetings, was presented at the monthly SHC-LCPC multidisciplinary forum. Mr Desmond Tan, a medical social worker, and Ms Li Kejia Lily, a registered nurse, both are part of the multidisciplinary team at home based Star PALS (Paediatric Advanced Life Support) programme at HCA.

There were five dimensions the team needed to assess.

  1. Physical and nursing care where diet and symptoms needed to be managed.
  2.  Practical and financial aspects such as the equipment loans and financial assistance.
  3. Spirituality for existential issues.
  4. Family and social aspects such as getting community and bereavement support.
  5. Handling grief, including negative emotions

Read the full article here.

Paediatric Palliative Care workshop at Hospis Malaysia

From eHospice

Participants from Malaysia and Singapore attended the 5th annual paediatric palliative care workshop by Hospis Malayia, in Kuala Lumpur. Facilitators, Dr Ross Drake and Prof Julia Downing, covered topics including assessment, pain and symptom management, challenging communication, palliative care for adolescents, ethics, decision making and end-of-life care and bereavement.

The small group breakout session in the morning encouraged discussions and reflections on how health professionals impact the suffering of the children and families being cared for. Participants also shared personal experiences and discussed ways to improve the care they provide and ensure the children and their families can access quality palliative care services. The workshop moved on to look at advanced issues, with four case studies brought forth for discussion, on the third day. Issues on advanced care planning, home ventilation and various ethical dilemmas, such as withdrawing or withholding treatment and supporting parents taking their children home to die, were discussed. Participants were also given the opportunity to role play in different scenarios, trying out different options. The role of social media in palliative care was also discussed, exploring issues regarding negative comments by the family on social media and application of trial treatment found on the internet.

In the afternoon, participants looked at integrating research and evidence-based practice into clinical practice in children’s palliative care. Expert opinion, systematic reviews and meta-analysis were among the different types of evidence discussed. Getting the research question right is the driving force behind research, and is as important as obtaining the answer. Thus, participants followed the “Feasible, Interesting and Innovative, Novel, Ethical and Relevant” (FINER) approach in formulating their hypothesis.

Through the workshop, participants felt it was a great opportunity to learn, network and share experiences and they were appreciative of the input from one another.

Read the full article here.

Barry Ashpole’s Media Watch (#484)

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

Articles from Asia Pacific Region:

Fresh call for improved palliative care in residential aged care

AUSTRALIA | Australian Ageing Agenda – 21 October 2016 – New data released this week showed that among 231,500 residents with completed Aged Care Funding Instrument (ACFI) appraisals in 2014-15, 9,144 residents, had indicated the need for palliative care. Odette Waanders, CEO of Palliative Care Victoria, found the gap between the need for palliative care among the residents and the recognition and response for it is of extreme concern. Qualitative research would be valuable to identify factors for the variability in facilities and for improvement in standards, said Ms Waanders. However, Professor Deborah Parker, director of the New South Wales Centre for Evidence Based Health Care, said it was important to distinguish that ACFI is a resource allocation instrument, not taken to represent the number of residents who require aged care facilities. https://goo.gl/hFcV6C

 Ministry considers program to share end-of-life wishes of elderly with ER doctors, paramedics

 JAPAN | The Japan Times (Tokyo) – 17 October 2016 – There is an increase in elderly terminally ill patients, and doctors have to try to revive them following collapse despite the patients’ wishes, they are unsure. The Health, Labor and Welfare Ministry will back a system that allows nurses, paramedics and doctors who provide home care for elderly patients to share information and makes a record of their end-of-life wishes. “Some fire department officials perform CPR regardless of the patients’ will. We need a guideline,” said Seishiro Marukawa, who heads the panel deciding on the guidelines. He also added that it’s best to respect the will of the patient and rely on their personal doctor rather than ER doctors and paramedics. “Many family members ask us to do everything we can,” Ryota Konishi who heads the emergency room at a hospital in Kawasaki said. “But if they have been bedridden for a long time and have no prospect for recovery, we aren’t sure if life support is the best option.”

 

Palliative care: The other opioid issue

From Nature

The ‘war on drugs’ has left many in developing nations with no access to strong painkillers. More than 5 billion people worldwide cannot get the medical opioids that they need. That is a staggering amount of unnecessary agony. – WE CAN DO SOMETHING ABOUT THIS!

Jim Cleary, an oncologist and palliative-care specialist at the University of Wisconsin–Madison – “Patients with pain have been unwitting victims of the war on drugs,” he says. The US-led war on drugs that followed resulted in widespread reluctance to prescribe and supply opioids for fear that patients would become addicted or overdose, or that drug cartels would divert opioids to the black market. Cleary says that countries such as the United States have an “unbalanced” opioid situation, and that abuse in these countries has distorted policies elsewhere, restricting legitimate access.

“It’s about the government and society at large accepting that while we have a responsibility to prevent abuse and diversion of opiates, we also have a responsibility to people in pain,” says former anaesthesiologist M. R. Rajagopal, who is a founder of palliative-care charity Pallium India in Thiruvananthapuram. Read more about the issue here.

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Please also check out “Life Asked Death” developing palliative care in Asia, a film on the Lien Collaborative Project by Lien Foundation and the APHN to find out what we are doing in other parts of Asia to relieve pain and suffering.

Barry Ashpole’s Media Watch (#483)

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

Articles from Asia Pacific Region:

More Chinese committed to end-of-life care

CHINA | New China (Beijing) – 8 October 2016 – Currently, only a small proportion of patients can access hospice care, as the waiting list comes mainly from nursing homes and community health centers. It is China’s top priority to train more social workers and carers as experienced hospice workers are scarce.  There are 200 million Chinese who are over 60, with more than 40 million critically ill. Most of them are disabled, blind, or suffering from conditions like Alzheimer’s and aphasia, says Li Zan, director general of Changsha Shifangyuan. Tang Zhuozhuo, the oldest volunteer there, feels grateful to every person she accompanied as they helped her overcome her fear of death. At the Carnation Geriatric Hospital in Changsha, social worker Sangye Tashi describes his job as to love and accompany. He also finds it more worthy by helping these people pass away peacefully than singing for fans. https://goo.gl/fGsDOl

Article highlighted to be of particular interest:

Palliative care: Keeping hope alive for the terminally ill

AFRICA (Rwanda) | The New Times (Kigali) – 10 October 2016 – Every year, desperate family members abandon their loved ones in hospitals hoping for help, after being financially and psychologically drained. Concerns of lack of trained palliative care professionals, regulation of the use of painkillers and ignorance among caregivers at family level, among others are a big issue. Grace Kankindi, palliative care nurse, warns that despite regular supply of morphine, lack of support affects patients’ well being and stifles their recovery. https://goo.gl/gCEK7K

The AAP Resilience in the Face of Grief and Loss Curriculum

PEDIATRICS | Online – 10 October 2016 – In order to help pediatric health providers turn anxiety and grief into professional experiences, a curriculum on resilience and adaptation has been designed.  It addresses the intellectual and emotional characteristics they need to provide high-quality, compassionate care while also addressing active and intentional ways to maintain personal wellness and resilience. https://goo.gl/AUgmS9

Quality of life can be worth more than extending life at all costs

U.K. (Scotland) | The Scotsman (Edinburgh) – 7 October 2016 – It is vital to ensure that care and support is built around the needs of the patients and their wishes towards the end of their lives. Often, this is when medical interventions of little or no benefit may be given, contrasting to their wishes. Therefore, it is important to have better communication between patients, families and healthcare providers to plan for the future. When healthcare professionals see what matters to their patients, beyond the medications to be used, then will there be a shift from extending life to improving quality of life. https://goo.gl/jB2nfb

Impact of APHN-LCPC movie “Life asked Death” – Part 1

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“Relief of suffering is an ethical imperative.  We cannot walk away from suffering when we know we can do something about it,”

– Associate Professor Cynthia Goh, project leader of the Lien Collaborative

Following the warm reception of the primere of the APHN-LCPC movie “Life asked Death” in Bangladesh, Sri Lanka and Myanmar, the movie has also touched the hearts of the audience at the screenings in Australia, Barbados, India, Malaysia, Philippines and Singapore. Riding on the wave of interest surrounding palliative care, there are plans to expand the reach of the movie. The upcoming activities are as follows:

  • China – We are planning on launching a campaign to promote the movie.
  • Thailand – We are working with the local champion for advocacy of palliative care to promote the film to all the Department of Medical Services (DMS) hospitals.
  • America, Europe and Africa – We will be extending the reach of the “Life asked Death” movie by working with the Union for International Cancer Control (UICC) to use the movie as a resource material for World Cancer Day on 4 February 2017.

View the movie at http://lifeaskeddeath.com/

Help needed: Review of cancer pain management guidelines

Dear members

The World Health Organization(WHO) is asking for help from an academic unit which has capabilities of doing systematic reviews in the area of pharmacological management of cancer pain in adults. This is to support the development of new guidelines for cancer pain management.

Please see the link below for details of the request for proposals and application form:

http://www.who.int/ncds/management/palliative-care/cancer-pain-guidelines/en/

Applications close on the 1st November 2016.