Palliative Care Conference 2023
28 April 2023
Lotus FM
Interview with Leigh Meinert, advocacy manager at APCC, about the Palliative Care Conference in April 2023 and palliative care in general.
April 2023
Palliative Care Conference 2023: Let’s start a conversation!
Bush Radio speaks to PALPRAC Member, Social Worker and co-director and Umduduzi Hospice, Tracey Brand. Tracey unpacks the Palliative Care Conference for Bush listeners. Palliative care is everyone’s business and the core theme of our conference.
Thank you for opening up the ‘red carpet’ for our conversation.
https://bushradio.wordpress.com/
Thank you to the POWER FM lunch team for this interview with PALPRAC Chair, Dr Julia Ambler, discussing the lack of availability of morphine. Reminding us that this poses a genuine concern for patients and doctors trying to manage pain.
This conversation was also highlighted on NEWS 24 – insert below,
Access to morphine in the South African healthcare sector remains a concern as availability is under pressure.
Morphine is on the WHO’s List of Essential Medicines and South Africa’s Essential Drugs List. Knysna Sedgefield Hospice, Dr Janet Stanford, said: “We have been facing a human rights crisis for the past three months if we go by the WHO guidelines of a patient’s right to pain relief. Severe pain has a significant impact on quality of life.
It’s also highly distressing to the patient’s family, carers, and healthcare professionals who have to witness people in pain and not be able to do anything for them and not have an answer for families about when the drug will become available.
Stanford said the public sector had been particularly hard hit since the morphine was usually the only drug stocked for severe pain relief at public facilities. Morphine is considered an inexpensive drug at an estimated R60 a gram, and a package of Mist Morph syrup contains 10mg or 5ml with a typical dose of 5ml every four hours or as required.
“In the private sector, there are other strong opioids that are available, but they are expensive and are not in a liquid form, so they’re facing the same challenges,” said Stanford.
“A liquid form of the drug is beneficial when people can’t swallow because it causes them more pain and liquid morphine has a rapid onset of action compared with tablets.”
‘National crisis
Dr Margie Venter of non-profit PalPrac (Association of Palliative Care Practitioners of South Africa) said the untenable situation that had unfolded needed to be called out as an “ongoing national crisis”.
“It’s desperate and dire. To allow this suffering to continue without alternatives is not humane,” she added.
Even with Barrs Pharmaceuticals’ response to IPAC that its operations have been restarted, Venter said liquid morphine remained unavailable at the end of September, adding there had also been no communication from the Department of Health on the way forward.
“We have been trying to delve through the supply network to try and find out where the hiccup is – whether it’s a supply issue, whether it’s an issue of non-payment from government, or even if there’s a global shortage, and we cannot get any communication from Barrs or the Department of Health.
We’ve sent enquiries through various channels, and we still don’t have any clarity on the problem. The government has been reticent, which means we don’t know where to focus our attention.
“We can’t plan or start finding solutions, especially in the public sector where there aren’t available alternatives to morphine,” she added.
Venter added that pain management was essential throughout the course of cancer treatment.
“With pain management, some people can function well, maybe even feel strong enough to work, so morphine is not just an end-of-life medication. It’s needed early on as part of cancer pain management.”
Today is National Grief Awareness Day. The death of someone close to us is an event we are all likely to experience. And the grief that comes along with it. For many of us, we don’t know what to do or how to deal with grief – whether it’s our own or the grief of someone we know.
National Grief Awareness Day is an opportunity to talk about grief, and loss, in an open-hearted way, knowing that others are going through the same thing. A chance to support those who have lost someone they love, and are now trying to pick up the pieces of daily life.
When my mom died very suddenly – 13 days from diagnosis till death – I looked for a book that would help me. I’m a writer and a reader, and books have helped me with every stage of my life… Like medicine, they can ease pain and shed a little light, and make things slightly easier to bear.
Except, I couldn’t find that book. I could find religious books about death, philosophical books about grief, and texts about grief counselling, but nothing warm, empathetic, and kind. I wanted something easy to read because my mind was foggy. I wanted something kind because life felt so hard. I wanted something that gave me space to express myself – rather than told me how I should be feeling. But I couldn’t find it – so I wrote it.
The Grief Handbook: A guide through the worst days of your life is the book I wished I’d had when my mom died. It’s a collection of all the things I found most helpful when I was grieving – from poems to podcasts to excerpts from books and articles – along with reflections on my grief journey, expert input on things like PTSD and complicated grief, and exercises that might help move through certain emotions. Things like colouring in and journaling, venting, and externalizing grief.
This year, together with two very wise women (artist Clare Louise Thomas of The LOVE Kitchen, and Alignd and Swansong co-founder Shivani Ranchod), I’ve created The Grief Course – an online companion through the grief journey. It’s an online course with zero expectations, self-directed and purely there to provide support and guidance as you move through grief.
My hope, with both The Grief Handbook and The Grief Course, is that others who are grieving can feel less alone. We are all in this together – this messy journey of loving, and losing those we love. Let’s be as kind as we can on the journey.
Bridget McNulty is the author of The Grief Handbook: A guide through the worst days of your life.
Welcome to the 2023 South African Palliative Care Conference.PALPRAC is proud to share the exciting news of the South African Palliative Care Conference 2023 to be presented as a collaborative venture between the three leading palliative care organisations in our country, the Association of Palliative Care Practitioners of South Africa (PALPRAC), Palliative Care for Children South Africa (PatchSA) and the Hospice Palliative Care Association of South Africa (HPCA).
This pioneering in-person conference will take place from 26 – 29 April 2023 at the world-class Vineyard Hotel in the beautiful mother city of Cape Town. REGISTRATION IS OPEN
In the wake of a deadly pandemic which exposed the lack of preparedness of many healthcare providers to offer appropriate end-of-life care to patients and families and addressing the urgent need to raise awareness of the multiple benefits of early referral to palliative care, the compelling theme chosen for our conference is Palliative Care is Everyone’s Business.
The conference aims to reach out to and welcome people from a broad diversity of vocations whose work brings them in contact with adults, adolescents, and/or children with life-threatening and life-limiting conditions and to encourage the exciting exchange of knowledge, new and innovative ideas, research, and experiences.
The overriding focus of the workshops, plenary and parallel presentations at the conference will be on the imperative for palliative care of the future to be inclusive, relevant, and sustainable.
Our 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 on 1 September 2022. For more information, please contact diné at dine@londocor.co.za
Palliative Care Conference Website: https://pcconference.co.za/ | Registration Link: https://pcconference.co.za/registration-form/
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/
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.
Palliative Care Conference 2023