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.”
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.
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.
During Lunch with Pippa Hudson on Cape Talk 567, in her Family Matters slot, Pippa discusses the importance of palliative care.
In conversation with Dr Margie Venter, a palliative care doctor and secretary of PALPRAC, they chat about what palliative care is, who might benefit from it and how the pandemic has releaved the gaps in palliative care services in South Africa.
As companions in care, palliative care teams are experts at helping with control of pain and other distressing symptoms, complex medical decision-making and offer emotional and spiritual support. However, most patients are not afforded the opportunity to have a palliative care team joining them on their journey with serious illness, even in the private sector. As it stands, patients are lucky to be receiving two weeks of care at home by a trained carer. Most, when their symptoms are uncontrolled or their condition deteriorates, need to go back into hospital. This is usually not the preferred choice of patients and families.
Advocacy for palliative care is growing globally, but medical schemes remain slow to act. The National Policy Framework and Strategy on Palliative Care was signed in South Africa in 2017. In the foreword of the document, Dr S.M. Dhlomo MEC for Health KwaZulu-Natal, states: “The World Health Assembly (WHA) Resolution reminds us that integrated palliative care is a basic human right, and that this right has been violated in our country, and in many low- and middle-income countries through neglect of palliative care as an integral part of the continuum of care.”
This policy, along with the fact the palliative care is considered part of Universal Health Coverage and is in the process of becoming a Prescribed Minimum Benefit (PMB) level of care in South Africa, implies that medical schemes can no longer shy away from reimbursing palliative care to patients with serious illness. They can also not expect providers to carry the burden of these costs. Robust, quality palliative care teams will only be established if they are financially sustainable. Schemes stand to benefit as patients are mostly able to be cared for at home, avoiding unnecessary and costly hospitalisations.
The way medical schemes reimburse palliative care providers for their services (if at all) remains one of the key barriers to palliative care access. In essence schemes pay a set rate for every consultation. This is called ‘fee-for-service’. This rate per consultation is typically very low, and does not take into account the long duration or complexity of such consultations. In addition, a lot of what these teams do is hold the space for patients and families: being available when there is a need, coordinating care by talking to other team members or doctors involved in the patient’s care, checking in proactively via whatsapp and so on. This is not time that can be billed for. And so, as a palliative care doctor is not seeing 4 or 5 patients an hour in their surgery, this way of reimbursement makes it virtually impossible for sustainable palliative care teams to exist.
PALPRAC has collaborated closely with an innovative new managed care organization, Alignd, to rethink this stalemate in our system and come up with something new. Alignd shares PALPRAC’s vision in improved access to optimal palliative care in South Africa. They do this by offering a comprehensive value-based business solution to medical schemes, called Alignd.Palliative. This product unlocks the financial gridlock for palliative care. A targeted palliative care benefit has been designed, based on international best practice, PALPRAC’s experience with their patients and Alignd’s expertise. Along with the benefit design, a value-based payment mechanism for formally trained palliative care multi-disciplinary teams has been established. This would mean that while healthcare providers are supported financially in delivering the service, patients are supported and empowered and costs are reduced without compromising quality.
Value-based care is concerned with the overarching goal of value for a patient. Under value-based care, incentives are aligned with outcomes. Healthcare providers are rewarded for helping patients improve their quality of life in an evidence-based way. Value-based care differs from a fee-for-service approach, in which providers are paid based on the amount of healthcare services they deliver. The “value” in value-based healthcare is derived from measuring health outcomes against the cost of delivering the outcomes.
Watch the video to find out more about value-based care, Alignd and their partners (including Palprac).
In this way, the Alignd.Palliative benefit is a seamless ‘plug and play’ solution for medical schemes. It will achieve the goals of quality palliative care to the patient, value to the medical scheme and sustainability to the provider.
If you think palliative care might be something to consider for yourself or a loved one, or if you have struggled with access to palliative care, please send us an email at info@palprac.org with your story. Patients and family’s voices are urgently needed to help shift the status quo.