KEYNOTE ADDRESS: STRENGTHENING CONNECTIONS AND COLLABORATIONS IN PALLIATIVE CARE
Dr. Frank D. Ferris
Associate Director, Palliative Medicine Education, OhioHealth, Columbus, Ohio. Member, International Affairs Committee, ASCO International Programs
So, you want to sustain or even grow your palliative care program. The secret to your success will be with the relationships you develop, and your effective use of communication skills, i.e., how much you “Ask and listen” rather than “Tell”.
Successful connections and collaborations start with the rigorous application of consultation etiquette with every clinical encounter. Help your referring physicians and their teams to be successful with the patients and families they are caring for. Then, with time, get to know your key customers and stakeholders and help them to be successful with all they are trying to achieve
PLENARY 1: BLUEPRINT FOR PALLIATIVE CARE IN MALAYSIA
Dr. Richard Lim
Head, Palliative Care Unit,
Hospital Selayang, Selangor
The National Palliative Care Policy and Strategic Plan 2019-2030 is now approaching its halfway mark as a 10 year roadmap for the development of palliative care in Malaysia. While the first 2 and a half years faced challenges of the COVID-19 pandemic, development has continued steadily. This paper looks at how this plan has progressed, the achievements and challenges that have been faced and aims to share what has been learned over the past 5 years as we endeavour to realise the vision of this National blueprint for palliative care. It also highlights the gaps that are still clearly evident and offers further directions for the national development of palliative care to move towards. While the Ministry of health has provided some of the leadership in promoting development, the work of palliative care has and always will be a collaboration of all stakeholders from both the government and non-governmental sectors as well as the private sector. It also has relied very much on the support and contribution of international organisations and friends from around the globe who share a common passion for providing compassionate care to those in need. It is only when we openly welcome and embrace every individual who is willing to care that we can further realise our vision.
PLENARY 2: MAKING HEALTHCARE HUMANE
Dr. M.R. Rajagopal
Chairman Emeritus, Pallium India. Director, WHO Collaborating Centre, Trivandrum.
Adjunct Professor of Global Oncology, Queen’s University, Canada
The United Nations Special Rapporteur for Torture calls denial of pain relief “inhuman or degrading treatment or punishment”. Yet, even 38 years after introduction of the World Health Organisation’s (WHO) three-step analgesic ladder, pain relief and palliative care continue to be unavailable to most of the 51 millions of people estimated to be in serious health-related suffering in low and middle income countries (LMICs).
The elements of suffering, the status and quality of healthcare and barriers to access to palliative care can be vastly different in these countries from high income countries. Particularly,
- A) In the background of poverty, catastrophic health expenditure destroys millions of families, impacting subsequent generations also.
- B) Inappropriate end-of-life care in intensive care units causes extreme agony to the dying and leaves families with guilty and often, pathological grief.
The needless suffering can be alleviated by action steps that take into account the ground realities in LMICs. A strategy is needed to integrate palliative care into medical and nursing education and into the countries’ healthcare systems at micro (individual or institution), meso (for example, a district) and macro (national) levels. Definition of palliative care should not be restrictive and must encompass all serious health-related suffering.
Total care demands participation of the community. Compassionate communities are evolving in many parts of the world where volunteers take responsibility for relieving suffering (particularly with psychosocial support) of those around them. The process usually starts with awareness programs, training of volunteers followed by their engagement in patient care.
Action steps need to be created bearing in mind the possible implementation gaps created by paucity of resources and by resistance to change. Periodic evaluation progress should include review at least on an annual basis and should lead to course correction when necessary.
PLENARY 3: RESEARCH COLLABORATIONS AND BREAKTHROUGH IN PALLIATIVE CARE.
Dr Jaclyn Yoong
Consultant Medical Oncologist and Palliative Care Consultant
Monash Health Services, Melbourne
Dr Jaclyn Yoong‘s primary interest is in lung cancer care and effective integration with palliative care. More recently she has also become interested in integrated palliative care for patients with progressive neurological disease. She will speak from an Australian perspective, focusing on the current initiatives in Australia in this space, the strategic plans and the achievements thus far.
PLENARY 4: TRANSFORMING PALLIATIVE CARE THROUGH CONNECTIONS
Dr Ednin Hamzah
Chief Executive Officer
Hospis Malaysia
Transformation is used to describe various aspect of change. Palliative Care has had a transformative effect to individuals, profession, organisation, healthcare system and perhaps invariable the country. Connectivity in palliative care through contact with patients, caregivers, policy makers, other healthcare workers and other both within and beyond our borders could be seen as a way of reflecting our own position and point to possibilities. Positive changes in values and attitudes that could result in benefits could be gained from developing strategic connections. These gains are usually measured through a long term process. Whether one feels that connecting with others potentially of different ideas is useful or otherwise may shape one practice. This presentation will illustrate how developing and nurturing connections have transformed one palliative care practice.
PLENARY 5: WE RISE BY LIFTING OTHERS – JOURNEY OF A PALLIATIVE CARE VOLUNTEER
Mok Check Boon
Volunteer, Selayang Hospital
The talk is a sharing and personal reflection on my journey as an end of Life Care Volunteer and the importance of effective communication for community care volunteers in the end of life support system.
PLENARY 6: COMMUNITY-BASED PALLIATIVE PROGRAM FOR CHILDREN WITH COMPLEX MEDICAL DISABILITIES
Prof. Dr Toh Teck Hock
Paediatrician & Head of Clinical Research Centre, Sibu Hospital
Professor, Faculty of Medicine, Nursing & Health Sciences, SEGi University
Adjunct Professor, School of Medical & Life Sciences, Sunway University
Palliative care is a specialised approach to improve the quality of life and offer comprehensive support to individuals grappling with severe illnesses and their families. This inclusive care extends to children with complex medical disabilities, characterised by significant, often multiple, and interacting health issues that result in long-term impairment and functional limitations. Such conditions include level V cerebral palsy with various impairments, muscular dystrophy with progressive weakening and degeneration of the muscles, autism and/or severe intellectual disability with behaviours that require a high level of support, and chronic medical conditions with coexisting issues such as cardiorespiratory diseases and gastrointestinal disorders. These conditions often result in long-term impairments and functional limitations, necessitating extensive medical management, rehabilitation, and ongoing support.
In Central Sarawak, a groundbreaking initiative has emerged to address the intricate needs of children with complex medical disabilities since the 1990s, currently based in Agape Centre. The innovative approach involves collaboration between hospital-based services, local communities, and public-private stakeholders. The objective is to establish a seamless and comprehensive palliative care ecosystem tailored to the unique challenges faced by these vulnerable children. The Sarawak model represents a departure from the traditional hospital-centric model towards a more inclusive and community-driven paradigm. The collaboration seeks to leverage the clinical expertise of hospitals alongside the community’s intimate understanding of local needs and cultural nuances. This re-imagined model provides medical support and holistic care, addressing the psychosocial, emotional, and spiritual aspects of the children and their families. By harnessing the strengths of hospitals, communities, and public-private partnerships, the initiative sets a new standard for paediatric palliative care, offering hope for other regions grappling with similar challenges.
PLENARY 7: FACTS AND FICTION OF MEDICAL CANNABIS
Dr Mary Suma Cardosa
Senior Consultant Anasthesiologist and Pain Physician
Selayang Hospital
Cannabis is a popular recreational drugs, used by an estimated 147 million people worldwide.
Whilst cannabis was included as a controlled drug in the UN Single convention and its use was illegal in many countries, this has recently changed with the legalisation of medical marijuana in countries like the USA (certain states), Canada, Australia and Thailand.
Medical cannabis refers to cannabis or cannabinoid preparations used as medical therapy to treat symptoms such as nausea/vomiting and pain. There are several different active compounds in cannabis, of which the most commonly used are tetrahydrocannabinol (THC) and cannabidiol (CBD).
This talk will review the current evidence about the efficacy and safety of cannabinoids, focusing on its role in the management of pain.
Although laboratory experiments support the hypothesis of cannabinoid-induced analgesia, this has not been translated into efficacious and safe medications. A recent meta-analysis of clinical trials using cannabis or cannabis-based medicines for the treatment of different types of pain found that while there was statistical reduction of pain with the use of cannabis and nabiximols, little certainty can be placed upon these findings due to the low or very low quality of the trials, as well as high or unknown risk of bias. Furthermore, there is also concern about potential harms especially with long term use of cannabinoids.
It has to be noted that political and commercial interests have played a part in the legalisation of medical cannabis in many countries, and that we as healthcare professionals need to focus on the scientific evidence regarding the use of medical cannabis in the treatment of pain and other symptoms.
PLENARY 8: WHAT IS A GOOD DEATH?
SR Geraldine Tan
Executive Director
St Joseph’s Home, Singapore
What is a Good Death? Is it subjective to each person? In some of my experiences ministering to dying , a good death means dying with little pain, not being a burden to my family and the ability to pay my bills for treatment and most importantly to make peace with people around me. When death is near, the hope of being able to rely on a God of Mercy and Love. For many, a good death is to feel at peace even if there is pain.
A good death is possible, if we listen to our patients attentively and be mindfully present.
PLENARY 9: HOSPICE AND PALLIATIVE CARE – PAST, PRESENT AND FUTURE
Dato’ Seri Dr. T. Devaraj
MD, Penang Hospice Society, Founding President MHC
In the sixties Dame Cicely Saunders advocated that the suffering of patients with advanced diseases could be addressed by whole patient care. It was only in the early nineties that this vision was implemented by the National Cancer Society of Malaysia in Penang as medical care in the homes of patients, named the Hospice at Home Programme It was a free community service. This grass roots approach was taken up in other towns and also adopted by the Ministry of Health as a palliative care service in large hospitals. There are many lessons from Penang – for the first time medical professionals provided care in homes. It was a welcome relief for patients and families as they were empowered to be part of the care team. Their desire for care at home till the end was fulfilled.
While this concept of holistic care has been acknowledged a plethora of perceptions of who should get care ranging from the dying to more recent calls for its commencement from diagnosis of an advanced illness has led to confusion. Recognising that suffering is part and parcel of every major illness is long overdue. This approach will be the duty of all clinicians and not a specialist function. On the contrary palliative care is just good medical care. It can be delivered by any care provider who has the approach and skills in an environment of support. Specialised palliative care staff can be accessed for difficult problems.
Mobilising all health professionals is the key to alleviating the access abyss in good medical care and simultaneously addressing the many structural issues faced by health care in Malaysia.
Against a background of the unfolding existential threat to humanity we still must persist in the vision to reach out and help.