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.
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).
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.
“Kindness, humanity, and respect—the core values of medical professionalism—are too often being overlooked in the time pressured culture of modern health care.” Harvey Chochinov
As the world has been thrown into a state of emergency with the COVID-19 pandemic, scenes never expected before are being witnessed by humanity. Healthcare workers and strategists scramble to generate strategies in keeping with the pace of the novel Corona virus to protect humanity. In South Africa, we learn from the course and trajectory of COVID-19 in the countries that have preceded us in acquiring the infection, but can we prepare adequately considering our socio-economic climate? With our lack of basic amenities like food, shelter, and adequate water supplies for safe hand washing and a high rate of HIV and Tuberculosis, we have to prepare for the worst medically, whilst socioeconomic systems are proceeding to correct these social inequalities. For the minority of those that develop COVID-19, the disease is serious (15%) to life-threatening (5%). However, if the infection rate increases rapidly, this will overwhelm our already burdened and under-resourced healthcare system.
Alongside life-saving management, palliative care becomes essential at this time of COVID-19 to support and improve the quality of life of patients (and their families) with serious illness, to alleviate suffering and uphold their dignity through active compassionate interventions until the end-of-life. Palliative care intends not to hasten or prolong death, yet alongside standard care we may improve survival by relieving symptom- and psycho-existential distress. As the community transmission increases in SA, we also have a responsibility to protect our vulnerable palliative care patients with advanced disease in the community who are COVID-19 negative with education and PPEs. Community based palliative care also places the healthcare worker at risk, and an unsupported healthcare worker can offer little support to another.
Dignity is a core value in palliative care. A basic principle of palliative care is to help the patient live and die with dignity, in conjunction with symptom control, and psychosocial and spiritual well-being in order to achieve the goals of optimizing quality of life. Dignity is an unconditional inherent worth possessed by ALL living beings – intrinsic dignity. Yet, there is a labile extrinsic attributed component: how patients view themselves and how they are viewed by others. With COVID-19, people are feeling unsafe and anxiety levels are high and this has affected their sense of worth/esteem. It is this extrinsic component of dignity that fluctuates and needs to be considered. There are a number of practical considerations that can threaten/improve the dignity of patients at this time of COVID-19 and yet there are simple basic compassionate measures that can be implemented to counter these threats.
Physical Considerations:
Psychosocial Considerations:
Spiritual Care Considerations:
Care of the Caregiver:
Healthcare professionals have an influence in the area of the extrinsic sources of dignity listed above, and can enhance the dignity of ALL patients at the time of COVID-19 by providing respectful compassionate care, in attending to all domains of care of patients, thus providing total care – There is never nothing we can do for anyone! Palliative care is active compassionate care!
As Broyard said, the separation of humanity and compassion from healthcare delivery requires that “treatment of disease takes its proper place in the larger problem of care of the patient”, and COVID-19 has made this statement most relevant.
The huge challenge of COVID-19 at present is that a large number of people will get serious or life-threatening illness all at the same time which will threatens to completely overwhelm health care resources, cause a high mortality and a great deal of suffering.
The fundamentals principles of Palliative Care are ideally suited to guide and support us through the Covid-19 pandemic.
It is essential to note that Palliative Care intends to neither hasten, nor postpone death. The intention is to improve quality of life.
All patients have a right to compassionate and dignified care at all times.
Even when an illness cannot be cured, the relief of symptoms and suffering is paramount and a great deal can be done.
This includes intensive care units, hospital wards, emergency departments, out-patient clinics, intermediate care facilities, care homes and most importantly private homes. PC provides skill and experience to people in their own homes.
The right preparation and guidance can ensure that this is possible and preferable, especially in a situation where there are not enough hospital beds.
In this time of high anxiety it is essential that all people need to think more deeply about their health and the health of their loved ones. We need to urgently develop skill for compassionate communication with our patients, their families and each other.
Dialogue between the health care provider and their patients about what lies ahead, their goals and preferences can be respected and incorporated into an Advance Care Plan(ACP). This is essential for all patients with serious illnesses or who are nearing the end of their lives, but it should be strongly encouraged for all older adults. ACP has been shown to lead to care that is more aligned with patients’ wishes, reduce the rate of futile, aggressive interventions at the end of life and reduce complicated bereavement in family members. PALPRAC forms can be downloaded from under PALPRAC Advance Care Planning
It is important to note that ‘palliative care’ does not only describe end-of-life care, but refers to the relief of symptoms and suffering for all, whatever their COVID status or final health outcome.
Dr Shelley Kibel, Palliative Care Clinician, Cape Town