3rd issue 2013 - Hospis Malaysia
Transcription
3rd issue 2013 - Hospis Malaysia
3RD ISSUE 2013 KDN: PP8369/10/2012(031405) BERITA HOSPIS FACING A NEW YEAR WITH OPTIMISM OR PESSIMISM It seems to have been in just a blink of an eye, 2013 is just about done. This time last year, Hospis Malaysia was getting over the visit of the Duke and Duchess of Cambridge and we were optimistic that the Ministry of Health was going to assist in the development of the paediatric palliative care programme nationally. We were also hoping to be able to recruit more doctors and nurses to provide more care in our community. Perhaps we were being too optimistic. The year 2013 has instead brought us greater challenges. The broader educational scenario has brought us thousands of graduates applying for jobs, yet apart from being polite and having a broad smile, most do not possess the reflective and critical thinking nor the language skills and gentle demeanour that is needed to be patient advocates at the most demanding area of healthcare. Whilst many colleges and universities have also asked us to assist in palliative care teaching, students are unable to access neither the vast literary library nor web based material essential to expand their knowledge, bearing in mind the limitations of using Google translation tools! Whilst teaching Malaysian students to develop a learning method through understanding rather than purposelessly accumulating non applicable factual information is challenging, we did find a few that offers optimism for Malaysia. It is hope that their enthusiasm for a humane and holistic approach to patient care will not be dimmed by their future working environment. In an effort to provide palliative care services, apart from facing a gross difficulty in finding doctors and nurses who yearn and thrive in a vocational and charitable environment, we should also take into account the environmental factors that are the combination of traffic jams, toxic fumes, tropical storms, floods and scorching sun. Perhaps as Malaysians, we may have upset a higher power? Standing still does not constitute progress and in many parts of the world, there is an understanding that palliative care offers a different paradigm in healthcare. There is a whole wealth of evidence that pain and symptom control is not good enough. A lack in the provision of information to patients, that psychological and spiritual issues are less of a concern to the clinician, that the elderly may suffer more from inappropriate treatment decisions and much more. A palliative care approach may improve patient satisfaction by focussing on what patients and families consider as important. Facing A New Year With Optimism Or Pessimism 1-2 Hospis Malaysia Welcomes New Members 2 Dogma Hospis Malaysia - A Key Advocate 3 4 Hospis Malaysia - A Beneficiary 5 Voices for Hospices - Hospis Malaysia’s Biennial Event 6-7 12th Charity Treasure Hunt 8 Thank You 9 Training & Education We Need Your Support 10 - 11 12 2 FACING A NEW YEAR WITH OPTIMISM OR PESSIMISM Many of the patients that we see, trust their doctors and rarely question their decisions even though it may not make much sense. Others that may not be is derived, to what the proposed treatment could achieve, how long will it take, what possible side effects, what other options may be available, and many more. Advanced care planning is also an area that palliative care should also address in Malaysia. In other countries, ethical and legislative issues are issues highlighted in order to improve clarity in understanding patient concerns towards the end of their life. Acknowledgements from patients and their family’s satisfaction towards the healthcare received would encourage our healthcare structure to gradually improve. Google, Wikipedia and other such search engines have captured the imagination of cyber crawlers in wanting to ask for information about anything and everything. If the public is given an opportunity and encouraged to take an active interest, the quality of our healthcare services could be both improved and made more accountable. Malaysians have voted for their preferred choice in government. Perhaps it is time we relook at our healthcare priorities from a user’s perspective. Palliative care needs to be part of this movement. Hospis Malaysia Welcomes New Members Hospis Malaysia is constantly seeking qualified nurses that possess the required attitude, knowledge and skills essential to succeed in this specialized area of healthcare. The work of our palliative care nurses is indispensable as they assess the needs of both patient and families, manage and deal with concerns and expectations of all. All our nurses are expected to undergo a rigorous recruitment procedure, complete an intensive training course meeting the highest regulatory standards and attend numerous Palliative Care workshops before being empowered to serve in the community. In order (From left) Nurses Christine, Elaine, Nadiah, Salwah, Pam, Apple, June to meet the demands of increased patient referrals we have actively recruited seven Palliative Care Nurses to join our clinical team this year; Pam Ho is an experienced nurse that has worked in a number of private healthcare hospitals over the past ten years. Fresh graduates Elaine Teo, June Thow and Christine Low hold a Bachelor of Nursing (Hons.) from the International Medical University. Apple Lee is an experienced staff nurse and lectured at a local college. We are also grateful to Sime Darby Medical Centre (SDMC) for providing nurses Nurul Nadiah Jaafar and Salwah Rohoman who will receive training from and will work with Hospis Malaysia for the next three years. Council Members Chairman Brig. Gen. Dato' Richard Robless (Retired) Secretary Datin Kathleen Yeoh Treasurer Ms. Fairly Yap Swee Eng Members Mr. James Armand Menezes HOSPIS MALAYSIA (223675-X) 2 Jalan 4/96 Off Jalan Sekuci Taman Sri Bahtera Jalan Cheras 56100 Kuala Lumpur Tel : (03) 9133 3936 Fax : (03) 9133 3941 E-mail :info@hospismalaysia.org Website :www.hospismalaysia.org Tan Sri Lim Leong Seng Dr. Ednin Hamzah Dr. Azlina Firzah Abdul Aziz Advisor Dato’ Dr. Sir Peter Mooney @HospisMY HospisMY Click on the icons to link to our social media page 3 DOGMA A dictionary defines ‘dogma’ as ‘a belief or set of beliefs that is accepted by the members of a group without being questioned or doubted. Hofstede’s Power Distance Index measures the extent to which the less powerful members of organizations and institutions (like the family) accept and expect that power is distributed unequally. Combine these two principles in our local context and we can begin to see how healthcare could affect those who are vulnerable such as patients. Using Hofstede’s Power Distance Index, those less powerful such as patients, willingly give power to those who they perceive as more deserving such as doctors, institutions and governments. If those in power then have a dogmatic approach to the needs of patients, there may be a high possibility that the needs of individual patients may not be recognized or met. The weakest in society are rarely acknowledged to have rights by those in positions of power. Unchecked, they slowly succumb to dogma and may feel that they actually deserve the conditions they find themselves. In society, many groups may identify with such a scenario. Imagine that you are a member of our ever ageing society, suddenly realise that something is happening to your body. Losing weight over the past few months, having a troublesome cough and suddenly coughing up blood. You have a caring spouse and 2 children who you have proudly brought up and now having wonderful careers. They bring you to a hospital and a chest x ray is done. Your family disappears with the doctor and 10mins later, they emerge with the doctor. You are told that its just a bad chest infection and given some antibiotics. And driven home. You have lung cancer, but you don’t know You think your family is acting in your best interests Your family thinks you can’t take knowing about it Your family thinks you will get very depressed and may do something stupid Your doctor thinks are you too old for any treatment What if they are wrong? Dogma and giving permission for others who you perceive know better may not necessary have your best interest at heart. Those in positions in authority often think they know best. Do your family truly know how you would respond? Does your doctor truly have your interest in mind? How would you want to be treated if you find yourself in a similar situation? 4 Fundraising & Awareness Hospis Malaysia - A Key Advocate Over the past few decades, remarkable developments have been achieved with various Palliative Care initiatives around the world. The concept of total care for patients suffering from life-limiting illnesses and their families have gradually been making strides globally as a form of healthcare that has a vital need in today’s community. However, despite all these successes, staggering evidence suggests that 42% of countries have no palliative care, and in only 18 countries, that is: 8.5% of countries in the world, was palliative care effectively integrated into the mainstream healthcare system (WPCA, 2011). It is impossible to tune out that there are still tens of millions of people around the world that live and die in great agony that could be easily prevented. The need for Palliative Care is enormous, and acknowledging this need is one of the main aims behind the observation of World Hospice and Palliative Care Day each year. This is a unified day of action dedicated to celebrate and support hospice and palliative care initiatives around the world. One of the biggest challenges faced in Palliative Care is the widespread resistance to its development arising from people’s misconceptions of it. This year’s theme “Dispelling the Myths and Achieving Universal Awareness” addresses common misconceptions surrounding palliative care. One thing is most certain about palliative care is that it is not just about death panels, it is infact about living a dignified and better quality of life under the most difficult of circumstances. At Hospis Malaysia, various initiatives were carried out in a bid to celebrate World Hospice and Palliative Care day. The most notable of events was The Standard Chartered KL Marathon, with over 30,000 marathon runners attending, this event provided us an ideal platform to educate the general public by extensively displaying colourful visuals on myth and truth statements on Palliative Care. Then there was the Voices for Hospices, a simultaneous wave of concerts held biennially in over 60 countries. To celebrate this initiative, Hospis Malaysia hosted a charity dinner and concert at the JW Marriot Kuala Lumpur garnering the support of over 700 guests. Myth Busters on Palliative Care These initiatives were organized to prompt a sea-change in thinking by everyone. For palliative care to be fully accessible and integrated into a health system, a better understanding and increased visibility of its purpose and need in the community is essential. People should understand that hospices is not just a place, it is not just about buildings or establishments, but rather attitudes and philosophies that need to be widely advocated for more people to experience its benefits. 5 Fundraising & Awareness Hospis Malaysia - A Beneficiary In the early hours of the 29th September 2013, Malaysia’s fittest and brightest awoke to what would be one of Malaysia’s largest sporting event, The Standard Chartered KL Marathon 2013. The 5th edition of the buoyant event this year welcomed Hospis Malaysia as one of the charitable organizations for the first time to benefit under the Run For A Cause category. This category enabled marathon runners to pledge the course of their runs to raise funds for a charitable organization of their choice. A total of 88 runners pledged their support towards Hospis Malaysia by raising funds months ahead of the marathon. On race day, they displayed their support by wearing t-shirts designed by Hospis Malaysia with inspiring messages. Such was the enthusiasm that even on a humid Sunday morning, these runners were geared up to give their all to run for a cause. This marathon event provided Hospis Malaysia with an innovative platform to spread awareness on Palliative Care to thousands of people. Hospis Malaysia’s lively volunteers carried colourful hand-made placards to dispel various myths surrounding palliative care in today’s society. This initiative comes in line with the month of October being the month dedicated to World Hospice and Palliative Care. The volunteers were also seen enthusiastically cheering on runners approaching the finish line with motivational running quotes that garnered plenty of attention. At Hospis Malaysia’s booth, large numbers of people visiting were able to watch a presentation on what personally inspires our runners to choose to run for a cause. This iconic event created a community involvement on an unparalleled scale. Hospis Malaysia would like to thank the organizers of The Standard Chartered Marathon KL for giving us the opportunity to be part of this event. And to all our runners and supporters, we salute their grit, determination and the spirit of their commitment displayed for Hospis Malaysia. You have truly made a difference! 6 Fundraising & Awareness Voices for Hospices - Hospis Malaysia’s Biennial Event Voices for hospices 2013 The strains of a sonata can bring one a sense of calmness, while a stirring chorus may rouse another. But listening to music can change much more than just one’s mood, it has the innate power to heal and transform. In recent years, patients with palliative care needs all around the world have tremendously benefitted from music. Last October proved to be one such month where a global musical extravaganza brought together people from all walks of life with a mutual aim that will benefit the cause of palliative care. DYMM Raja Zarith Sofia with other honorary guests before the dinner Voices for Hospices, a musical event celebrated biennially in over 60 countries, is an event organized to raise awareness and understanding of the medical, social, practical and spiritual needs of people living with a life-limiting illness and their families. The events emphasis this year was to “Dispell the Myths and to Achieve Universal Awareness”, the theme conceived for World Hospice and Palliative Care Day 2013 to address the many misconceptions surrounding palliative care. At Hospis Malaysia, the Voices for Hospices event was celebrated at the JW Marriot Hotel in Kuala Lumpur carrying a strong message of encouragement and enlightenment. Bright, eye catching standees and posters displayed various myth and truth statements on palliative care. Unique of it all were the bright potted plants set up on each table that contained myth and truth pop ups that were available for sale. The opulent Mayang Sari Ballroom where bright potted plants containing Myth and Truth pop ups were displayed for sale. DYMM Raja Zarith Sofia emphasizing the need for greater awareness in Palliative Care 7 Voices for hospices 2013 Palliative Care is a medical specialty that has achieved numerous breakthroughs recently. However there still remains to be many misconceptions that surround palliative care. Misinformation around hospice and palliative care represent significant barriers to accessing palliative care services. During her speech, Organizing Chairperson Datin Kathleen Yeoh addressed one of these misconceptions. She said, “People don’t like to think about children dying, but it is a reality”. It is often misunderstood that hospice and palliative care is a form of healthcare available for only those that are elderly. Truth be told is that children and people of all ages can benefit from the services provided through palliative care. She also took this opportunity to appreciate the various Paediatric Palliative care initiatives carried out in Malaysia by DYMM Raja Zarith Sofia, the National Paediatric Palliative Care patron. A large provision of palliative care also includes caring for the patient families or caregivers as a whole unit. DYMM Raja Zarith Sofia highlighted this during her speech as she recalled her experience in the 80’s with a woman suffering from cancer and her family. She credits this experience as one that inspired her to learn more about palliative care. She believes that “we should give them their right to live their lives with dignity”. Public awareness of the concept of palliative care and its service availability remains insufficient and this remains to be a huge barrier hindering its widespread development. Lack of awareness on palliative care would indefinitely lead to serious implications, a situation that palliative care advocates around the world are striving to avoid. Dato’ Richard Robless, Chairman of Hospis Malaysia highlights the barriers faced in Palliative Care, “The challenge is, far more effective advocacy, in order to stimulate greater awareness of the plight and suffering of the ill”. The atmosphere of the evening reached its peak when singing sensation Syafinaz Selamat took to the stage to entertain the guests with her rendition of the infamous ‘Memory’, a classical song originally performed by Cats. She captivated her audience in her bright costume and encouraged them to sing along with her to many familiar hits from the past. This spectacular musical event left over 700 guests enthralled to the very end. But more importantly was that the event ignited a message of hope and optimism that will continue to be carried out by all present that night. And to the end, in the encouraging words of Dato’ Richard Robless that said, “there is a need for more to be the voice of the voiceless”, we will continue to strive towards achieving it. Songstress Syafinaz Selamat belting out some crowd favourites Upcoming Conference The Singapore Hospice Council will be organising the 6th edition of the Singapore Palliative Care Conference. The conference themed “Building Bridges, Enhancing Care” aims to address the issues that challenge those caring for people facing a life limiting or life threatening illness. This conference welcomes anyone from general medical practitioners, allied health practitioners; volunteers to anyone aspiring to resource themselves with knowledge on Palliative Care. Visit http://www.spcconference.com/ for further information. 8 Fundraising & Awareness 12th Charity Treasure Hunt – A flash back at our most anticipated annual fundraiser Every year, Hospis Malaysia receives numerous inquiries on our annual fundraising events. But it is one event that has retained its reputation as the most talked about and most anticipated of events, year after year. This is none other than Hospis Malaysia’s Annual Charity Treasure Hunt. Whether atop the chilly mountains of Cameron Highlands or through the historical city of Malacca or nestled along the pristine beaches of Kuantan and Penang, this event has taken participants on puzzling journeys across almost 8 cities, all over Malaysia. The last 12 years have witnessed avid treasure hunters from all walks of life solving riddles overlooking scenic backdrops and traipsing through busy sidewalks as part of an infuriating, mind-numbing competition for a charitable cause. Now with the emergence of fancy GPS, smart phones and tablets, the game has completely evolved. The hunt has become more competitive and exhilarating. The payoff every other year has been attractive. Regardless of who won, no one ever went home empty handed, goodie bags each year were filled to the brim with freebies from various sponsors. The lucky winners took home top prizes such as return air tickets, luxury cruises, resort stays and fine dining vouchers. The real winners undoubtedly remain to be those that have benefitted from the services provided at Hospis Malaysia. Hospis Malaysia’s Charity Treasure Hunt Flagoff Ceremony over the last 5 years Since its inception back in 2001, this event has welcomed loyal participants. One such family team, “Borderless Love”, fondly remembers this event as an annual family affair that their daughter, Adelyne has grown up with. This year, their team dubbed themselves, Borderless Love XII, to mark their 12th year as participants of this event. Hospis Malaysia’s treasure hunt is a game that requires teamwork, a command of anagrams and essentially in today’s world, electronic battery charges. One recurring participant Mr Yin Kam Chuen, recalls the very first treasure hunt where participants relied almost entirely on basic pens and papers to solve clues. Participants at Hospis Malaysia’s Charity Treasure Hunt – The Sneaky Snake Trail 2013 9 Thank You B O H: Saya Sayang Wesley Methodist Kuala Lumpur - 7th Annual Cross Coun try Run Malaysia In conjunction with Boh’s Saya Sayang Malaysia Campaign, Malaysians were encouraged to pledge their love for their country on Boh’s facebook page. For every pledge received, Boh donated RM1 to Hospis Malaysia, totalling up to RM10,000. t Gala 2013 The International Balle ns by Danceworks Productio Kolej Yayasan Saad hestra Concert rc O ity Annual Char Kolej Yayasan Saad showcased the remarkable musical talents of its students in an Annual Charity Orchestra Concert held on the 2nd July 2013 at Dewan Bandaraya Kuala Lumpur. Hospis Malaysia is honoured to have been elected as one of the beneficiaries of this event. On the 31st July 2013, students of the Interact Club from Wesley Methodist Kuala Lumpur organized their 7th Annual Cross Country event and elected Hospis Malaysia as one the beneficiaries of their event. The proceeds collected from the event was presented during an official cheque presentation ceremony held at the school campus in Sentul. RM10,000. Worldwide Resins & Chemicals Sdn Bhd“Giving Back To Charity ” golf tournament Yayasan Sime Darby The International Ballet Gala 2013 organized last August by Danceworks Productions showcased their last ever performance and Hospis Malaysia is proud to have been elected as a beneficiary of this event. Inner Wheel Club of Ku ala Lumpur (IWCKL) District 330 Members of the IWCKL District 330 paid a visit to Hospis Malaysia last 26th September 2013. The group was given a tour around the premise and a cheque presentation was held by the 15-member group led by Ms Cecelia Lee, the current president of IWCKL. Yayasan Sime Darby recently contributed to Hospis Malaysia for the expansion of its Patient Care Programme 2013 for a year. The sponsorship will cover the four core services offered by Hospis Malaysia, namely the Home Visit Programme, Day Care Programme, Education and Training Programme and Public Awareness and Advocacy Programme. YSD Governing Council member Datin Paduka Zaitoon Dato’ Othman presented the mock cheque in a presentation that was held on 23 July 2013 at Hospis Malaysia. As part of its “Giving Back To Charity” programme initiatives, Worldwide Resins & Chemicals Sdn Bhd generously contributed to Hospis Malaysia in conjunction with its inaugural golf tournament held on 4th October 2013. NTV7 Feel Good Run NTV7 celebrated the networks 15th anniversary with the Feel Good Run 2013, held on 7th July 2013. Hospis Malaysia was selected as one of the beneficiaries for the event. 10 Training & Education Asia Pacific Hospice Palliative Care Network Past Workshops PC3 Suffering & Hope 23rd-25th August Presented by: Liese Groot Alberts, Grief Therapist & Lecturer (New Zealand) & Dr Sue Marsden, Palliative Medicine Specialist (New Zealand) “Hope is an important ingredient of living a fulfilled life. The hopes we have helps us to make plans and to achieve goals.” Patients living with a life-limiting illness are burdened with suffering that may cause despair to themselves and their families. This three day workshop addressed how to deal with issues of suffering as many may not know how to give hope when curative treatment becomes increasingly futile. Key takeaway: Healthy conversations about hope and suffering should be implemented as a natural part of the caring relationship between caregivers and healthcare providers in the palliative care context “It was enlightening to hear the opposing perspectives of doctors and nurses on some of the challenges encountered while coordinating with families and colleagues in a palliative care setting. We witness suffering in our daily work. By facilitating conversations of hope- it could potentially make patients and their families feel part of a trustful relationship with their healthcare provider and assist them through the healing process.” Elaine Teo, Palliative Care Nurse PC4 Pain & Symptom Management 5th-7th October Presented by: Dr Ghauri Aggarwal, Palliative Care Physician, Concord Hospital Sydney, Australia Symptom management is the term given to the assessment and management of distressing physical symptoms such as pain, nausea, depression, fatigue and treatment side effects. Until recently, too many patients suffering from life-limiting illnesses received inadequate treatment for their symptoms. Fortunately, there have been many advances in the role of symptom management as an important element in the process of handling pain. Pain is a complex experience made up of many physical and psychological factors- most people fear it. The anticipation that pain is going to get worse may make pain worse. It is difficult to think and make decisions when you are in pain or frightened that pain will return. This three day workshop deals with aspects of both pharmacological and psychological issues on pain and symptom management so that patients with life-limiting illness are given the opportunity to live out their days with meaning and with as little distress as possible. ....continued next page 11 Training & Education Asia Pacific Hospice Palliative Care Network PC4 Pain & Symptom Management 5th-7th October Key takeaway: Pain is a frequent complication of life-limiting illnesses. Pain that is not well controlled causes significant distress and disability, and despite the availability of best practice approaches to pain management, there is wide variability in how pain is treated in practice. Providing Quality-of-Life (QOL) and effective management of pain for these patients and their families is therefore a core element of palliative care practice. Attendees Feedback: “The workshop was an eye opener for me in terms of managing pain. Most of the information I have learned I could say is like a one hundred eighty degree turn in management for me. Armed with my newly acquired knowledge - I am now able to provide effective relieve for my patients suffering from pain. I look forward to return to Hospis Malaysia to quench my satiety for hospice knowledge” Dr. Kathy Cruz, Philippines PC5 Paediatric Palliative Care 19-21st October Presented by: Dr Rosalie Shaw, Palliative Care Physician and Consultant, formerly Executive Director of Asia Pacific Hospice Palliative Care Network, (Australia) &; Dr John Collins, Head of Department Pain Medicine and Palliative Care, The Children’s Hospital at Westmead (Australia) Paediatric Palliative Care offers a specialised approach in dealing with not just diseases but also the symptoms and issues related to physical, psychological, bioethics, social and spiritual distress derived from the illness. Key takeaway: By focussing on ethical issues and identifying the challenges faced in caring for children with life-limiting illnesses, symptom management and communication strengthened participants’ knowledge and confidence in this difficult area. Attendees Feedback: “Thank you again for such an informative, lively and engaging workshop. The training was delivered very professionally and the facilities were of very high quality. I learned so much and it was a fantastic experience for me to visit Hospis Malaysia. The workshop offered skills that will improve the ability for paediatric physicians, nurses and other health professionals to care for children living with a life limiting illness. Please pass on my thanks to all the wonderful staff who made the workshop run so smoothly and efficiently. Best wishes for your continued excellent work.” Margaret, Nurse, Australia “I find that I am now better equipped to approach the difficult conversations with parents and children living with a life limiting illness and have a better understanding on the importance of managing symptoms to promote a better quality of life for the child.” Christine Low, Palliative Care Nurse 12 We Need Your Support Project “ Little Stars” About 12 Million children around the world can benefit from palliative care but access to services remains an issue” The Little Stars project is a global initiative aimed to raise awareness and encourage public engagement towards positive changes at both local and national levels that will benefit children living with life-limiting illnesses. Hospis Malaysia is proud to be selected to be part of this global project in support of Paediatric Palliative Care. A series of films highlighting the positive stories of children worldwide living with life limiting illnesses will be filmed to challenge many predetermined notions surrounding death and to powerfully demonstrate the transformative effect that good palliative care can have on families facing an unimaginable dilemma. The broad project goal is – to ensure that every child needing palliative care can access it worldwide, thereby relieving the suffering of children and families facing life-limiting illness. As part of the projects advocacy efforts designed to help reach this goal, we are inviting you to host a screening! Hosted screenings serves as an effective method for educating and informing audiences. By expressing your interest to do so, when the films are complete in 2014 we will provide you with a copy of the collection of ‘Little Stars’ films on DVD to facilitate your screening and keep for your own use. If you would like more information about the Little Stars Project or to host a screening please call 03-91333936 and speak to anyone from the PR Department. Sponsor printing of our newsletter Berita Hospis, for many years has been a vital communication tool that we use to keep the general community informed about the various developments on Palliative Care globally and within Hospis Malaysia. As a leading advocate for professional palliative care, we are continuously striving to raise the level of public awareness towards this area of specialized healthcare. This newsletter is a key instrument to facilitate this. Berita Hospis currently enjoys a readership of over 40,000 people which includes patients, families, donors, healthcare professionals, education bodies, friends of Hospis Malaysia and well-wishers from all around the world. We invite you to join us in our efforts by sponsoring the printing of our next newsletter and consequently making our vision to reach out to more people in need of palliative care attainable. For more information on how you can be a sponsor, please call 03-91333936 and speak to anyone from the PR Department. Click here if you wish to make a donation.
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