Saturday, 2 May, 2020

Postponed until further notice due to COVID 19 impact

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at University of Technology, Sydney,

0830 to 1530

Confirmed speakers include Dr Anil Tandon, Assoc. Prof. Odette Spruyt, Dr Brett Sutton, and Ms Joan Ryan.

The forum is a chance to learn more about APLI, Project Hamrahi, being a mentor and PALCHASE,the international palliative care humanitarian advocacy group.

Registration is $50.00 and includes refreshments and lunch.

Contact secretary@apli.net.au or chairman@apli.net.au for further information about the forum and registrations.

Online registration will be set up in the coming weeks.

– A discussion of palliative care service development in the Asia Pacific region, presented by Odette Spruyt
– Pain control in palliative care by Yoshiyuki Kizawa from Kobe, Japan
– Management of the cancer wound by Edward Poon from Singapore
– Bereavement care by Jun-Hua Lee from Taiwan

These sessions were well received and provided a valuable opportunity for clinicians in different countries to learn from an expert in that field and also to share their own professional experiences. Unfortunately, not all countries in the region have reliable internet coverage or sufficient bandwidth so some attendees were unable to join the meetings. In response to this, in recent months APLI has been looking at a new educational initiative in partnership with APHN.

Project Focus aims to set up online discussion groups between palliative care clinicians in specific countries in the Asia Pacific region and APLI mentors. Some nascent palliative care centres struggle with isolation, limited practitioner experience and variable institutional support. In effect, Project Focus would work towards similar objectives to Project Hamrahi: to improve the capacity for best practice patient care in the local setting and to reduce the isolation of palliative care providers in emergent services.

APLI is therefore calling for expressions of interest for mentors to volunteer their services to help support our regional partners. Project Focus would particularly suit clinicians who might otherwise find it difficult to travel overseas for mentoring work, as the contact will be online using a small group discussion format on the ‘Slack’ communication platform. APHN has already identified local clinicians in two separate services in remote and regional Indonesia who would like to be partnered with APLI mentors. In addition to this, there has also been some interest from doctors in Vietnam, Brunei and Nepal whose learning needs were unable to be supported by the APHN Dialogs.

Although the exact process will be flexible, it is proposed that education would begin with case presentations from the local APHN clinicians. These would then serve as a springboard for the APLI mentors to explain current evidence based practice recommendations. The subsequent discussion would then take into account local factors such as medication availability, local resources, staffing and other factors such that a viable and culturally appropriate management plan can be formulated.

I hope that you will share our excitement for this initiative. Project Hamrahi has demonstrated the value of teams of mentors made up of both doctors and nurses working together with local Indian clinicians over a sustained period of time. Project Focus has the potential to broaden the scope of such partnerships to other countries and so I invite you to contact me via chairman@apli.net.au with a short biography and reflection on why you would wish to work as a mentor.

– Anil Tandon

I hope you will let me tell you a story about Lakshadweep, a group of islands in the Arabian sea, off the coast of Kerala, India.

A teacher of art at a government girls’ college in Kavaratti, one of the 10 inhabited islands of Lakshadweep, leads a grassroots palliative care project, Thanal. Starting alone, he responded to what he saw and felt was lacking in his island, home care relief for the people. On his bike, with a bag containing a meagre assortment of medical items and a heart full of compassion, he rode from home to home, caring for the ill and their families in whatever way he could. His first patient was an elderly man, abandoned by his family, soaked in excrement and dirt, lying alone in his home. From this beginning, one man dedicated to making a difference, one man without government or medical support, has been able to create a thriving palliative care program, extending across 5 of the 10 islands, primarily volunteer-based, which is now supported by health officials, government officials and other community leaders. His reputation is large, as is his heart and the hearts of the many volunteers he has inspired and offered a means of engagement in building a proud and self-sustaining community of action. There is next to no security, financial, staffing, nor external supports. It is a labour of love, a family more than a society where each member is able to contribute from their skills and learn new skills. It is a social movement, also promoting organic farming, cleaning up the island, exercise and diet, positive leadership and being responsible for your neighbours, literally. Sounds too good to be true, and yet, it is happening, 3 years in the making, big dreams, daily action.

When such roots take hold, let’s provide all the support and guidance and encouragement we can to help this tree to grow.

There is so much for us to learn from Lakshadweep.

We are reminded, strongly reminded, that providing palliative care is within the province of all of us. Anyone who has eyes to see and courage to act, can make a difference. Moulana started his work without a label. He then found out about Pallium India, an NGO working in Kerala, the state closest to Lakshadweep. He then found a name, palliative care, for what he was already doing. A doctor, Dr Ali Azher, and a nurse, Mr Ahammed Khafi , saw what he was doing and joined him. They attended the PI 6 week training and are now fully involved in palliative care service delivery and training of volunteers, working as volunteers after their normal workday is over. They provide 24 hour on call cover and frequently respond to requests for help. There are many others, such as Rafiq who provides accounting and administrative expertise as well as direct care, Sayed Koya assists with programs and functions with his organisational skills and energy and Mansoor, another nurse, is always ready to lend a hand.

We are reminded that it is in the home where most of the care takes place. Those of us who are privileged to work in higher income countries know only too well the loss of capacity of our communities to care. Not so in Lakshadweep, where patients are cared for at home, definitely as a duty within the framework of this island with a population who are entirely Muslim, but also as a loving service.

We are reminded that palliative care is a philosophy of care that extends beyond walls, beyond diagnoses, beyond professional labels and hierarchies, beyond medicines, equipment, services, beyond ourselves. Yes, many of the home care patients visited are bedridden living with chronic illness, subarachnoid or CVA- induced hemiplegia, bronchiectasis, encephalopathy with spasticity. But in a setting without home care services of any type, this is the need. The team dress pressure ulcers, check blood pressures, urinary catheters, Ryles’s tubes, tracheostomy tubes, contractures , hygiene and diet. They encourage and support the carers, mostly women, who are providing most of the hands-on care. Their visits reduce the loneliness of patients and carers alike.

Through Hamrahi, Australian palliative care professionals will continue to visit and support the development of services across the 10 islands of Lakshadweep, remote island communities which are being linked by the service of more than 75 volunteers, coordinated and motivated by the vision of one man who began this gigantic work on a simple bike.

Moulana and a volunteer

In the December 2015 Issue of the Australasian Palliative Link International Newsletter, Dr Odette Spruyt wrote of her personal experience of her mother’s passing in April 2015. For Odette, knowing her beloved mother died according to her own wishes and with dignity brought Odette comfort in her bereavement. In the same Newsletter edition Dr Anil Tandon introduced himself as the incoming Chair of the Australasian Palliative Link International as well as writing about Project Hamrahi and the heat and dust during his adventures in Rajasthan. Included again in the same Newsletter was an article by Dr Abhijit Dam, the Director of Kosish the Hospice and an invitation for readers to attend the first ever ‘Kosish the Hospice Self Care Retreat’. I read it with much interest and after a discussion with Tracy Robinson, Clinical Nurse Consultant at the Sandalwood Ward at Glengarry Hospital in Perth’s northern suburbs I decided I’d love to visit Kosish the Hospice, meet Dr Abhijit Dam and learn more about his notion of compassion and the work he is pioneering with taking palliative care to the poor in remote and rural parts of India.

Sunday – local villagers attending the free weekly clinic mostly for women and the elderly.

Using a psychotherapeutic term, those of us working in palliative care and with the elderly provide ‘containment’ and ‘holding’ to our patients and clients, their family members and loved ones. In my work as a counsellor in psycho-oncology and palliative care this is mostly directed at emotional and psychological containment. To provide such containment to others requires each one of us to ensure we care for ourselves. Self-care is not a luxury or an additional task, when working in palliative care. It is an essential professional responsibility so as to ensure we can ‘be present’ for and with others. The opportunity to participate in a first ever ‘Self-Care Retreat at a Hospice’ in India piqued my interest and felt like a balm for my soul.

Kosish the Hospice in February 2016

Whilst continuing to work professionally in my private practice and as an academic at Edith Cowan University, throughout the previous ten years I’d been primary carer for my severely intellectually disabled sister as she endured multiple critical health issues as well as for each of my aging parents in their 90s as their own health declined. Eventually this culminated with me being present as each of my beloved family members died. Both my sister’s body and my father’s body had gone to medical research at the University of Western Australia respectively in 2011 and 2014. My father was cremated in July 2015, and my sister in September 2015. In early December I made my decision to register for Dr Abhijit Dam’s ‘Self Care Retreat at Kosish the Hospice’ and was filled with excitement at the prospect of a new adventure to a different part of India I’d not yet visited. Just two days after making my decision and informing my 93 year old mother, she fell badly in her aged care facility, was taken to emergency where I joined her in the early hours of the morning and where she died within four hours. Her death came quickly in the end. Her funeral and cremation was held on 18^th December 2015. The final 6 months of 2015 will always remain as a significant period in my life. I include this personal detail in the hope that those reading this appreciate that as health professionals working so closely with the terminally ill and with the elderly, we too have personal lives, families and loved ones for whom we care. We do need to balance our own care as we offer care to our patients and clients as well as to our own loved ones.

Morning sunrise at Kosish the Hospice

Life is a magnificent tapestry of colourful events and experiences. We never do know what is before us. Our professional work regardless of the roles we function in, demands that we step into ‘the unknown’ every day we go to work. Thus it is wise for us to ‘walk our talk’ and to practice what we promote to our patients and clients – to actively apply self-care. If we are to demonstrate compassion with others in a professional capacity then we quite simply must practice experiencing compassion towards ourselves. As Odette experienced earlier in 2015 and similarly myself at the year’s end, there has been enormous value and comfort in knowing my sister, my father and my mother each benefitted from receiving the most professional medical, nursing and allied health support available in our fortunate country. Here in Australia my loved family members each retained their individual dignity and wishes as they were cared for, in hospital and at home, with great love and sincere respect. With this as my personal context I travelled to India and to Kosish the Hospice with an open heart filled with compassion and eager to learn from different contexts and to converse with others more about life and death and their myriad of meanings.

Taking of a pulse Ayurveda style

 Usha working at the Kosish the Hospice Sunday weekly clinic 

In preparing us for the visit Dr Abhijit Dam emailed each of us on several occasions requesting we ‘come with an open heart filled with compassion’. As participants, we three Western Australians – Tracy Robinson, Clinical Nurse Consultant, Cheryll Fredericks, Senior Nurse, both working at the Sandalwood Palliative Care Ward at Glengarry Hospital, and myself plus two Americans – Christopher Paquette from Philadelphia and Carol Clark from Boston, together with the sixth member at the retreat, Dr Ranjan Singh, Consultant Anaesthesiologist & Critical Care, who drove almost 150 kilometres from the Brahamananda Naryana Hospital to Kosish the Hospice, certainly ventured to our destination with hearts open for a new and different experience. We were not disappointed despite any personal challenges we may have encountered.

Dr Abhijit Dam welcomed us before we even left Australian soils. His emails impressed me with the warmth and honesty of what he was offering – to come and view his establishment in its early development and not yet as a finished facility as well as to witness his work as he practiced providing palliative care to the poor in regional India. For us three Western Australians arriving at Kolkata Airport at 10.30pm, after leaving our homes at 3.00am earlier that day, meeting our driver who spoke little English and then driving for 7 hours through the night was a memorable introduction to India for sure!! Anil’s description of the dust and the bumpy roads became evident almost immediately as we drove out of Kolkata and hit the road so to speak winding north east towards Jharkhand.

Existential psychotherapist, Dr Irvin Yalom (1998) comments, ‘…this approach, “existential psychotherapy,” defies succinct definition, for the underpinnings of the existential orientation are not empirical but are deeply intuitive’. Yalom clearly explains his definition: ‘Existential psychotherapy is a dynamic approach to therapy which focuses on concerns that are rooted in the individual’s existence’ (1998, 170). Thus each person’s process of dying and their moment of death form an essential part of their unique existence. I carried within me the notions proposed by Yalom that there are four ultimate concerns each individual will face at various times in their life. The four ultimate concerns include: death, freedom, isolation and meaninglessness. All four of these ultimate concerns are not only associated with end of life but may present during any of life’s challenging events. Our precious time spent at this inaugural Self Care Retreat provided ample opportunities in a quiet place and in a slowed down pace, to contemplate and share engaging conversations indirectly discussing these four ultimate concerns. In particular to consider these within the poignant context of India – a country possessing a myriad of diverse contrasts was food for our souls.

 Village boy quietly observing the visitors at Kosish the Hospice

Tracy Robinson and Cheryll Fredericks presenting at the Curie Abdur Razzaque Ansari Cancer Institute in Ranchi

Karen Anderson presenting at the Curie Abdur Razzaque Ansari Cancer Institute in Ranchi

With time out and away from, our regular intensive work and hectic work schedules and workplaces, space to go quietly within oneself enabled each participant to reflect upon both their professional and their personal ‘self’. The process was made even more productive with the magnificent food stunningly prepared by Usha according to Ayurveda principles. The food was an attraction for all of us. Such fresh produce grown locally and prepared just prior to eating was delightfully flavoursome. I miss Usha’s cooking so much as I’m sure the other retreat participants equally do.

Dr Abhijit Dam uses the phrase, ‘Tat Thami Asi’. It is Sanskrit which translates as, ‘That art thou’, ‘That thou art’, ‘Thou art that’ – ‘That you are’ or ‘You are that’. The meaning refers to ‘the self’ in its original, pure, primordial state. It is wholly or partially identifiable with the ‘Ultimate Reality’ which is the origin of all phenomena. The days spent at Kosish the Hospice as we partook of the different activities – introductions to Ayurveda medicine and lifestyle principles; yoga; meditation; indulgent massages; visits to historical ruins; local villages and marketplaces as well as to the Curie Abdur Razzaque Ansari Cancer Institute in Ranchi, the capital city of Jharkhand; observing clinics in practice; interacting with village children; watching the local wild life and especially the delightful monkeys playfully carry out their daily routines, the Kosish latest breed of cute puppies and the majestic rooster; listening to the spirituality of music, drumming and singing exquisitely preformed; watching the spectacular sunrises and sunsets; and simply sharing the routines of a day –  made for a unique life enhancing and memorable cultural exchange. From morning rising to the day’s quiet end we contemplated the universal question, ‘Who am I?’ as each of us spent time in the presence of being with our own ‘ultimate reality’.

The friendliness, sincere and heartfelt care and nurturance provided by Dr Abhijit Dam, Usha Rani Mohanty and their wonderful staff – Mahato, Balli and Lakhhi – is now etched upon each of our hearts and minds. The days spent at Kosish the Hospice provided each participant with the space to go quietly within to reflect upon not only their practice within the field of palliative care, psycho-oncology and working with the elderly, but to meet with themselves and their own personhood. In doing so we were able to, whether consciously or unconsciously, inevitably reflect upon Yalom’s four ultimate concerns of death, freedom, isolation and meaninglessness.

 Lakhhi – staff member at Kosish the Hospice

Mahato – staff member at Kosish the Hospice

Kosish the Hospice is a truly remarkable innovative concept still in its early stages of development. More work is required to complete the total building complex and thus a regular funding source is necessary and is in the process of being sought.  Some folk may find the location, the facility and or the resources limiting. But this too adds to the uniqueness and the richness of what we experienced In February 2016. We were invited in to share the vision of one man and his close colleagues who are pioneering introducing the concept of providing palliative care to the terminally ill and elderly into some of the poorest and most remote areas of India. This is an endeavour which I now firmly support, and endorse. It’s a project which all of us as participants in the first such ‘Self Care Retreat at Kosish the Hospice’ actively want to commit to in whatever way we can. It’s one thing to provide palliative care where resources and funding are readily at hand even when such funds may be limited. It’s a whole different challenge attempting to educate for, and to advance palliative care services to those living in poorer remote and rural regions of India wherein access to medical resources is extremely compromised.

Ready to depart Kosish the Hospice after a wonderful cultural exchange of contexts, conversations and compassion

Upon departing Kosish the Hospice, we three Western Australians thoroughly enjoyed the excitement of exploring just a little of Kolkata and New Delhi before spending time travelling in beautiful Rajasthan. We then flew to Pune and attended the IAPCON Pune2016 conference. With over 700 participants from around the world the Indian Association of Palliative Care Conference 2016 delivered a broad collection of topics, including both research-based and practice-based presentations. The conference was superbly organised and allowed for a vast array of stimulating conversations and encouraged excellent networking. I felt I learned and gained a great amount and I look forward now to attending future conferences. I curiously noted less coverage of aspects relating to bereavement, existential psychotherapy, reflective practice and in particular the use of Balint Groups and supervision. All these form important components when engaging, educating, empowering and excelling in palliative care. Hopefully some of these will be included in future IAPC conferences.

Continuing to educate and advance understanding for the value of palliative care services at all levels within not only Indian society but within our global society, is substantively worthwhile. This is particularly and urgently needed in regards to increasing support for the pioneering work and efforts of people such as Dr Abhijit Dam, Usha Rani Mohanty and others who are endeavouring to take palliative care to the poor in rural and remote areas of India. The challenges encountered in India are not dissimilar to what we face here in Australia with delivering palliative care services to those living in our own remote and isolated regions and mores specifically with our Aboriginal peoples. There is much work yet to do and it is exciting to be involved.

IAPCON Pune 2016 Conference – Dr Priyadarshini Kulkarni, Karen Anderson, Dr Abhijit Dam, Cheryll Fredericks and Tracy Robinson.

Reference:
Yalom, I.D. (1998). The Yalom Reader: Selections from the Work of a Master Therapist and Storyteller. New York: Basic Books

The second, and more primitive aspect of our nature, is the fear of death…it could be death in the sense of dissolution of our physical body or death of our ‘grasping nature’. We spend our whole lives acquiring relationships, money and fame…but little do we realize the fleeting nature of these acquisitions. Facing death in its raw and physical form while caring for patients, brings us face to face with our own ‘sense’ of mortality. And that is exactly where the confusion begins. For there are now no clear cut guidelines! What little scattered ‘evidence’ is there is refuted by science. Sadly, our minds have been programmed to ‘believe’ in science.

OK…now for a little task…you just have 10 seconds for this…name any three diseases of non-infective origin that has a cure.

Well you may now realize how ‘advanced’ our medical science has been over the last 300 years! What we have achieved by our ‘technology’ is to make the process of dying more prolonged, painful and undignified! No wonder, most health care professionals shudder at the prospect of having a ‘taste’ of their own medicine…and I yet to see a doctor or a nurse who would want to die in their own ICU!

I was in the same boat…a strong atheist. Working with the dying and for the reasons stated above, I started looking for answers…and I found them, which could satisfy an arrogant person like me. Little did I realize at that time that I was doing ‘Self care’!

The first step is re-learning to believe…with humility.

Remember, at least in our generation, how in our childhood we used to nestle in the laps of our parents and grandparents and listen wide-eyed to fairy-tales and other stories. Those are fond memories and I daresay that a part of our character too has been moulded by those experiences. Those experiences are ingrained in our memory as ‘good and soothing’…for we had believed!

I believe that death is comforting…blissful. You just have to be aware…being mindful!

I have ‘designed’ a ‘Retreat session’ on Self care based on these perspectives at our rural center in the tribal state of Jharkhand in India starting Jan. 30 2016, for a week. I intend to introduce you to your SELF in the retreat.

About KOSISH

I have been pioneering the cause of palliative care in a resource-poor and virgin community in the tribal state of Jharkhand in India since 2006. Illiteracy, poverty, ignorance are the rule of the day. Most people do not have access to basic health amenities. Care of the terminally ill remains a low-priority issue with them. Death means a mouth less to feed – economics simplified!

Faced with such challenges gave me an opportunity to innovate focusing on resources that are available, accessible, affordable and acceptable to the community. I put in my personal savings to buy a land and then construct the first and only ‘Long term care facility for the Elderly & terminally ill’ in a rural setting. I realized that the Elderly are the largest group requiring palliation and combining care of elderly with palliative care helped to remove the stigma associated with hospices which are often seen as places of dying. I also learnt to focus on spiritual, psychological and social aspects of care, which are often neglected….and I found that the use of medications came down! Sadly now, we have no funding to support ‘staffing’ for the unit. We are in desperate need of funding to support staffing and a vehicle for our ‘home-care’.

Details can be found on www.kosishthehospice.webs.com and our page, www.facebook.com/kosishthehospice

– Dr.Abhijit Dam, MD, FCCP, FPM, MSc Pall Med(Cardiff)

Anjum Joad is a highly experienced palliative care specialist who established the palliative care service at BMCHRC 17 years ago. BMCHRC is a charitable trust cancer hospital with approximately 250 beds in a city of 6 million people. Over time the service has gradually developed to include two anaesthetic colleagues with palliative care experience who also provide medical input, two junior medical officers and two or three nurses. Apart from consultation liaison and direct care for inpatients, there is a busy outpatient clinic which operates on an open access basis six days a week.

For the last three years, Anjum has coordinated the Jaipur Certificate Course in Pain and Palliative Medicine which is a six week course for both doctors and nurses. Odette Spruyt and Mary Duffy attended the inaugural course in November 2013 and this year I was invited to help. The course is one of several six week courses available in India; currently these are also conducted in Ahmedabad, Hyderabad, Kolkata, Mumbai and of course Trivandrum. This year’s course was notable because it marked the commencement of input from the Indo-American Cancer Association, which is assisting to meet the growing demand for trained palliative care clinicians by partnering with Pallium India to write a clearly defined curriculum for these courses.

With the course being held in the peak of the Indian summer in the desert state of Rajasthan I was initially nervous to accept the invitation from Anjum, but eventually decided to accept this as a challenge to the cloistered life we lead in the air-conditioned homes, cars and hospitals of Australia. As it turned out, the challenge was raised a couple of bars along the way. Firstly, by virtue of the fact that the air-conditioning to the outpatient room which we used as our base had been disconnected for reasons unclear to all – so we had to manage with ceiling and table fans which seemed to do nothing other than blow our papers all over the place and just circulate the stiflingly hot air. Although it was hot – the maximum daily temperature tended to be around 42 to 43 degrees Celsius – the dry nature of the heat made it manageable.

The second additional challenge came with the invitation extended to join Anjum and a palliative care colleague from New Delhi, Sushma Bhatnagar, on a road trip to Jodhpur. Jodphur is a major city in Rajasthan approximately 340 km from Jaipur – on Indian roads this translates to a five to six hour bumpy but entertaining ride. Anjum and Sushma had been invited to present a palliative care workshop for the medical community in Jodhpur and by luck this was scheduled for the day after my arrival in India. Once again, it was an opportunity too good to miss, and it was with great pleasure – and some amusement as I was obliged to be a recipient of assorted felicitations including not just a bouquet of flowers but also a commemorative trophy – that I assisted in the delivery of the three hour workshop to a very attentive audience of 80 or so doctors.

I joined the course in the fourth week and spent a week with a small group of four medical officers and three nurses. I was requested to deliver presentations on a number of topics including the pain management, anxiety and depression, prognostication, communication skills including not for CPR discussions, the management of ascites and brain tumours. As one would expect, this teaching was incorporated into the day-to-day provision of clinical care but this afforded many opportunities for bedside teaching. I was very interested to find out that two of the medical officers were in fact dental surgeons: it seems that in BMCHRC, and perhaps elsewhere in India, it is possible for dental surgeons to practice medicine under close supervision. If Anjum hadn’t told me about their qualifications I certainly wouldn’t have been any the wiser as they certainly demonstrated very good medical skills and knowledge.

On the final day of my Jaipur visit, Anjum had requested that I present at the hospital grand round. Based on my experiences in Jamshedpur, another Project Hamrahi site, I decided to talk about burnout as I had noticed that this was a problem for Indian oncologists. After several days of working together Anjum requested that I perhaps change the topic of my presentation to something of a more scientific nature, or in her words, ‘It would be good if you didn’t talk about pet therapy but rather something to show my oncology colleagues that we in palliative care are real doctors also!’ So it was with that in mind that I chose to present the findings of the ketamine and octreotide studies conducted by the Palliative Care Clinical Studies Collaborative.

All in all I had a very enjoyable week in Jaipur. I was made to feel very welcome, it was a genuine privilege to witness the excellent work being done not only for individual patients but also to increase the palliative care workforce, I hope I was able to make a small contribution to the teaching being conducted and I was able to make a new friend with the dynamic and inspirational Anjum Joad.

– Anil Tandon

Fiji Islands

The team at the Colonial War Memorial Hospital welcomed me to visit them in November to meet and talk together about their efforts to develop palliative care in Fiji. Dr Fong, obstretician gynaecologist and Chairperson of the National Oncology Clinical Service Network, is highly motivated to develop palliative care as part of his focus on ensuring primary care and health-promoting cancer care networks are in place across Fiji. The Ministry of Health is developing a new Fijian Cancer Action Plan and have palliative care within its sights as an integral part of this, but are looking for international support to determine best practice suited to the Fijian setting. Clearly, training needs are high on the agenda.

It was great to meet the team of hospital and community based nurses who are passionate about improving palliative care services.

We plan to continue our discussions in 2016 and collaborate on education initiatives, hopefully with the support of other international agencies already working with the Fijian MOH, universities and hospitals there.

– Odette Spruyt

Dr Fong, team members from CWH and community nurses, Suva, Fiji

The theme of IAPCON 2016 is: engage, educate, empower and excel

– engage with the community, patients and their families, policy makers, opinion leaders, volunteers and the medical fraternity.

– education for all medical and paramedical personnel at all levels. This will help increase awareness about the important role of palliative care in ensuring quality of life, especially in the face of a life-limiting illness.

– empower every patient and the family to take informed decisions at the right time in partnership with the medical team.

– excel through interaction with experts and each other

We look forward to your presence at IAPCON 2016.

Back ground information

The concept of palliative care is very new for Sri Lanka, with significant developments starting in 2013. This is true for the northern province. This province is one of 9 provinces in SL, and has 5 districts, including Vavuniya. The teaching hospital for the northern province is in Jaffna district, with a district general hospital in each of the other districts. Vavuniya District General Hospital is the second largest hospital in the province, has 20 consultants including pathologist, radiologist, anaesthetist, and Oral Maxilla Facial surgeon who serves the whole of the northern province. Daily, 800 people attend the hospital outpatient department and in my OMF clinic, 1000 patients attend per month.

My interest in palliative care arose as most of my oral/pharyngeal and other head and neck cancer patients present with Stage 3 or 4 disease. Meeting Dr Suharsha Kanathigoda was a turning point in my life and led me to explore the world of palliative care. Currently, there is not one palliative care specialist in SL, many doctors and nurses have misconceptions about opioids, opioid availability was minimal and policies resulted in restriction of availability of opioids for medical use.

The following initiatives have occurred in the northern province to date:
• Establishing the MDT discussion focussed on palliative care
• Establishment of palliative care clinic (H&N oncology)
• Forming the palliative care data collecting centre and referring centre
• Developing H&N oncological hospice, Cheddiculum Base Hospital, Vavuniya, Sri Lanka
• Learning and study in the field of palliative care
• Teaching doctors, medical students, nurses, nursing officers and allied health workers, through workshops
• Started to do small studies such as audits and research
• Founding the regional association of palliative care for the northern province
• Collaborative work with other institutions, professional bodies, agencies who are in the field of palliative care locally and internationally
• Started to sensitize peoples’ hearts, through an awareness program for non-medical people (corporate sector)
• Started home based palliative care services in northern province
• Establishment and strengthening of the hospital based palliative care services
• Promoting palliative care by directing and filming a documentary on palliative care
• Launching the web profile for education, awareness, and teaching in palliative care

Establishing the MDT and role at the General Hospital, in Vavuniya

At this meeting, both  non-oncological and oncological cases are discussed. The team consists of OMF surgeon, oncologist, radiologist, pathologist, pediatrician, psychiatrist, anesthetist, ENT surgeon, physician, general surgeon. Other members of the palliative care team may participate. Each case is discussed in detail in front of the patient and family. Social  issues are explored by the palliative care nurses and bring some solutions.  The  patient is categorized as for home-based, hospital-based or end-of-life care. Home-based palliative care cases are being referred to palliative care collecting centre , OMF unit, General Hospital, Vavuniya.

Patient examples (consent was given to publish these photos)

Establishing the Hospital-Based palliative care service at General Hospital, Vavuniya

Initiatives include implementing a pain assessment and management chart  with a ward policy that this is started on every patient admitted.

Education and training

This has been an important focus since our palliative care work commenced. We have conducted our first palliative care workshop attended by over 600 participants including medicine,  dentistry, allied health, councillors, students, volunteers and community workers. There were many local, national and international participants.

 Vavuniya nursing school, 22/12/2014

Cancer hospice in base hospital Cheddiculum ,Vavuniya

This will be the first head and neck cancer palliative house in Sri Lanka. The provincial government is directly involved in establishing this center. The plan is to have a palliative unit and hospice in Cheddikulum Base Hospital, Vavuniya with the support of north province health ministry, RDHS Vavuniya, PDHS, Shanthi Foundation Sri Lanka Cancer Care Association ,Sri Lanka Association of Palliative Care, and other charities. This will be free of charge to patients. It will provide long term care if needed. It will also be an education resource in palliative care practice for the region.

Research

Early research and audit reveals a lack of awareness about the use of opioids, a need for education about the management of patients with oral and pharyngeal cancers and a study of the mode of dying of patients with H&N cancers.

Community services

The Vavuniya region has the first ever palliative care nurses, some of whom are working in a voluntary capacity. Home visits by doctors and nurses in the team reveal the high level of poverty and suffering in this community.

Mr .M is a 60 year old Muslim man with oral cancer. I operated on him about one year ago, followed by radiotherapy and chemotherapy treatment. Now he cannot open the mouth at all and able to swallow only liquids, with associated weight loss.

Poverty and Pain

This elderly woman lived with her daughter in very poor conditions.  The roof of their hut leaked, the toilet was 50m away, there were two plastic chairs, water from the well was unhygienic and had high salt content. Her daughter’s fiancé was asking for a high dowry. She worried about her daughter’s future and not being there to  help her.

Forming professional body and the association

I started the regional association of palliative care for the northern province. It was  launched on 13th March 2015.  Dr Kanathigoda,  Director of Shanti Foundation, and WHO are international  patrons. The National Cancer Control Program and Cancer Care Association, Sri Lanka, are national patrons.

Our association has an MOU with the Shanthi foundation of Australia, the Mental Health Society,  Vavuniya and rehabilitation  centre in Base Hospital, Cheddiculum.  It has close working relationships with the Palliative Care Association of Sri Lanka, as well as its national patrons.

Sensitization of the public

We made a documentary on palliative care which was released on the 18^th March, 2015 in Vavuniya. 600 free DVD copies were given to the public. It can be viewed on you tube, search for “palliative care documentary , Sri Lanka” or on the official website of the Regional Association of Palliative Care, Northern Province ( www.rapcnp.com)

Future Plans

We hope to develop our knowledge through visits from and links to international experts, and conduct collaborative studies with international associations, professional bodies and institutions and palliative care specialists. Our dream is that Vavuniya hospice and palliative unit will become an international and local treating center for palliative care. We aim to expand home-based palliative care services to other parts of the country. We will continue to raise public awareness about palliative care and work with charities and  NGO’s to assist the welfare of our patients and  families.