Clinical Director Dr. Margie Venter discusses Palliative Care on KykNet & Kie with Dr. Darren Green. Highlighting key misconceptions and important facts on Palliative Care, our multidisciplinary support, and our passion for Palliative Care within Southern Africa.
PALPRAC Chair Dr. Julia Ambler discussing Palliative Care in the context of an ongoing discussion on euthanasia.
WATCH HERE: https://www.enca.com/shows/judge-yourself-dennis-davis-26-may-2022
MEDIA RELEASE – Euthanasia is not a Palliative Care practice.
As the Association of Palliative Care Practitioners of South Africa (PALPRAC), we would appreciate this opportunity to respond and describe Palliative Care more comprehensively due to the recent debate around euthanasia in the media. Euthanasia is not a Palliative Care practice.
The aim of Palliative Care is to actively and compassionately address the suffering of patients with life-threatening illnesses. This is achieved by alleviating “total” pain. Patients and their family members are supported with physical, psychosocial, and spiritual care in response to their assessed current and anticipated needs. This holistic approach allows for rapid and effective relief of suffering, allowing a patient and their family to live with optimal quality of life until the time of death.
The intention is to focus on measures that bring comfort and an extra layer of support to patients and their families whilst they are actively living, and to assist in preparations for and beyond the death of the patient. Death is considered a natural, inevitable process and Palliative Care aims to neither hasten nor postpone it. Fears, which understandably result from the anticipation of a person’s death, may be allayed with the assurance of impeccable assessment of pain and other distressing symptoms, prompt and pre-emptive interdisciplinary Palliative Care, transparent communication and empowering patients and their families to voice their health care wishes.
We respect the autonomy of the patient, particularly in relation to their healthcare preferences, however, Palliative Care does not condone or support the practice of euthanasia. The literature supports that, with better understanding and provision of quality Palliative Care, there are fewer requests for euthanasia. Palliative Care practitioners endeavour to act ethically when making difficult recommendations regarding withdrawing and withholding of treatments and in so doing undertake not to prolong unnecessary suffering. We recognize that suffering is unique to each person, therefore our care is tailored within a trusting therapeutic relationship. In our experience, patients remain hopeful in meaning-making during their journey, despite deteriorating health and impending death. This personalised support eases the family’s experience of grief.
Euthanasia does not form part of Palliative Care practice. The vulnerable need to be protected, even more so near the end-of-life. Few understand Palliative Care as a choice in care and currently only a minority have access to this valuable service.
Our call as Palliative Care practitioners would be to clarify the difference between Palliative Care and euthanasia, and to increase the awareness, access and availability of Palliative Care within all sectors of our South African health care system.
Media enquiries can be directed to Andrew Francis andrew.francis@palprac.org 0827738467
Putting the spotlight on pain management.
Link to article: https://bit.ly/3sPHm22
Addressing the need for good pain management, SPOTLIGHT address this concern for many South Africans. The article address inequalities in access to pain relief, assessing pain relief and treatment. Thank you to Dr. Margie Venter and SPOTLIGHT for this publication.
https://www.spotlightnsp.co.za/
PALPRAC will host our Annual General Meeting on 15 August 2022 at 19 pm.
Inviting all members to confirm their attendance by registering, registration link: https://bit.ly/3AMR2PO
Our chair, board, and executive team are excited to share the past year with our members as we continue to accelerate access to palliative care in Southern Africa. For more information please contact Andrew at andrew.francis@palprac.org or 0827738467.
Palliative Care is everyone’s busines
s. Our conference theme and collaboration by PALPRAC, Patch SA, and Hospice Care Association of SAas we present the Palliative Care Conference 2023.
Lack of awareness of the multiple benefits of early referral to palliative care as well as the devastating effects of the pandemic has underscored our conference theme:
Aim: To draw together a broad diversity of practitioners for important conversations and shared learning with a focus on the imperative for palliative care to be:
Inclusive: Encompassing clinical conditions across every discipline of medical care, all age groups, and every care setting.
Relevant: Involving a bio-psycho-socio-cultural and existential multidisciplinary team approach to every patient with multiple pertinent ethical considerations.
Sustainable: Engaging health systems (policymakers, regulators, medical schemes, professional bodies, hospital administrators, and academia) to ensure access and integration.
Conference activities: Activities will commence on Wednesday, 26 April, with an optional full day of workshops, an opening ceremony followed by two and a half days of plenaries, abstract-driven oral and poster presentations, and a gala dinner, ending at midday on Saturday, 29 April.
Please look out for our call for abstracts which will be distributed soon or keep an eye on our website https://pcconference.co.za/
#PCConference23 #PALPRAC #palliativecare #palliativecaresouthafrica
Children’s Palliative Care is in crisis. Today, the 8th October, is HatsOn4CPC (children’s palliative care) day. It is an awareness day with the theme #LeaveNoOneBehind. While even adults are being left behind, especially in rural and impoverished areas, the plight of children living with serious illness is desperate.
In her recent article in the Daily Maverick, Dr Julia Ambler, clinical director of Umduduzi Children’s Hospice explains that there is only one single, official palliative care post in the whole South Africa while an estimated 1 million children qualify for this additional layer of medical support. There are many barriers to access palliative care, but the overarching problem is one of money.
Doctors like Dr Julia Ambler and Dr Michelle Meiring (Chairperson of PatchSA, Palliative for Children South Africa) have worked tirelessly to advocate for children’s palliative care. At the same time they are offering clinical services, training other healthcare professionals and fundraising for their own salaries. This is immoral, unsustainable and at some point people will lose steam. As Dr Ambler notes in the article: “One could not imagine a cardiothoracic surgeon having to delay an important operation because she had to attend a funding meeting or create a social media campaign to secure her income through charitable donations.”
Palliative Care is an essential service, a human right, part of Universal Health Care and a recognized medical speciality in many parts of the world. South Africa has an existing National Policy Framework and Strategy, which was signed off in 2017. To date very little has been done to put action to this policy. Certainly no funding has been allocated by the government.
In the same vein, few medical schemes offer comprehensive Palliative Care benefits to children, and when they do the rates reflect neither the time spent nor expertise offered by Palliative Care teams to patients.
The problem for Palliative Care providers is that they have very little leverage, because they do the work anyway. It is meaningful work and practitioners are drawn to it the same way they were probably drawn to medicine in the first place. If someone in need calls and you have the skills to assist, how does one say no? However, few practitioners are prepared to, or can afford to work for so little reimbursement or none at all. Then there are many other more viable, even lucrative, options in medicine.
Without funding (not donor funding) the field of Paediatric Palliative Medicine will never grow and there will be fewer providers to offer services to a growing number of children living with serious illness. Paediatric Palliative Care services are in crisis.
Uncontrolled pain is probably the most troubling symptom that can chip away at one’s quality of life. It affects all aspects of living: mobility, appetite, sleep, mood relationships and well-being.
Pain can be effectively managed with the support of your palliative care team or other healthcare providers. Sometimes medication is needed, making adjustments until the right medication and dosage is found. Often, however, other support can also be helpful whether it be talking to the social worker, working with a physiotherapist or having help with physically difficult tasks.
PALPRAC have collaborated with CANSA and PATCH to create a simple to read-and- understand guide to pain management in the home. It will help you understand what you can expect and what help to ask for. You can download the guide here.
PALPRAC have also created simple guides on the use of oral morphine. Oral morphine is affordable, available and one of the most effective medications in treating cancer pain. (Please note that morphine can only be prescribed by a registered medical doctor. Please follow their instructions carefully. The content of this guide serves as support & does not constitute medical advice).
Dr Margie Venter completed her training as a Clinical Oncologist in 2004 at Stellenbosch University (Tygerberg hospital). After working in both state and private practice, she left the Vergelegen Cancercare practice in Somerset West at the end of 2013.
“I needed to recharge and recalibrate, “ she says. “I had the sense that there was another role for me to play. And essentially I figured out it was to be a knowledgeable companion on the serious illness journey.” This was a role she had played for both her parents and a close friend who died of cervical cancer at a young age. “It still haunts me”, she admits. “She was far away and had little support. That was real suffering and felt helpless. She needed someone who could help sort and make sense of the medical information provided, understanding what it meant practically so that she could make better decisions for herself. Such a medical companion would also help to manage serious or niggly symptoms which eat away at quality of life. And support the family! That, I discovered, is some of what we do in palliative care.”
This meant a lot of additional training. “I did not have the words and skill to have these conversations. Sugar coating is not helpful. People need honest information and we need to support meaningful hope. I needed to learn this skill, like a surgeon would an appendectomy.” Margie completed her diploma in Palliative Medicine at UCT in 2016 and did additional skills training at Harvard Medical School between 2016 and 2019.
“I have finally found my niche! I love my work. I feel honoured to be allowed into the space of patients and family living with serious illness, helping them navigate their journey authentically. I like cutting through the nonsense, getting to what matters most.”
One of the barriers in scaling access to palliative care is that of funding. Whether in state or private practice, funding is poor. This means that few providers are able to deliver this vital service in an economically sustainable way. There are few to no palliative care posts for doctors available in the state.
Not one to be put off by a challenge, Margie realized that a united approach would be needed to educate and advocate on the role of palliative care. “Doctors play an important role in delivering quality palliative care within a team. We needed a united voice to say that.” After a palliative care conference in Johannesburg in 2016, she started collecting names and numbers of others trained in palliative medicine and eventually she became co-founder of Palprac, the Association of Palliative Practitioners of South Africa.
“There is a lot of work to do in integrating palliative care into all disciplines of medicine. I have learnt in the last 3 years that Rome really was not built in a day, but I still wish it was,” she says wryly.runs
In the meantime, Margie runs in a private palliative care clinic called Enfold in Stellenbosch, offering palliative care to not only cancer patients. She serves on the Stellenbosch Hospice board and also volunteers her time there clinically. “My 3 boys, aged between 10 and 15, all know what palliative care is. I think that is a very good investment for who knows when!”
The Practical Approach to Care Kit (PACK), also known as Adult Primary Care – APC, is a health systems improvement programme designed to support the work of primary care health workers in under served communities (like doctors, nurses, midwives, health officers, community health practitioners).
Since 1999, the PACK programme has been developed, implemented and evaluated in South Africa, and scaled up across primary care reaching more than 30 000 health workers.
PACK is a comprehensive clinical decision support guide, revised annually to keep up with health priorities.
Following the publication of PACK for use in Botswana that reflected WHO guidance on palliative care, in 2016, the PACK team at the Knowledge Translation Unit (KTU) collaborated with UCT palliative care clinicians to add content to reflect latest South African palliative care policy.
This included a palliative care section, prompts for the clinician to consider palliative care alongside routine care for serious illnesses like HIV, DR-TB, dementia and stroke, as well as related training cases. Since then the content has been expanded and is updated annually, supporting health workers to identify and assist patients with palliative care needs.
Paediatric palliative care doctor in KZN and co-founder of Umduduzi – Hospice care for children
Our next board member to introduce is our treasurer, Julia Ambler, a paediatric palliative care doctor.
Julia discovered the world of palliative care in Oxford, UK where she was lucky enough to land a post as training and working as a general practitioner and a children’s hospice doctor. “Graduating back in 1998, I had no idea how much could be done to support and care for children with life-limiting and life-threatening illnesses.” Ambler explains.
In 2008, Julia moved back to Durban, her town of birth, with her young family. She felt overwhelmed and daunted by the sheer volume of children requiring palliative care with no established service in the whole province. Since then she was part of establishing these much needed services, first as The Bigshoes Foundation – Durban Branch, and later in 2013 as Umduduzi – Hospice Care for Children. She co-founded Umduduzi, with her life partner and social worker Tracey Brand.
In her role, she consults in children’s palliative care in both the private and state sectors and sees children at almost every hospital in Durban. As a sessional lecturer in the Department of Paediatrics, Nelson Mandela Medical School, University of KwaZulu-Natal she trains health professionals and medical students.
She is also a workshop facilitator for the Medical Protection Society and has become an expert in communication skills training for health professionals. “I believe that the doctor-patient relationship is key to successful, empathetic and compassionate care. Excellent communication skills are essential to achieve this.”
Julia lives in Durban with Tracey and two sons, Luke and Jack.