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.”
“Sugar coating is not helpful. People need honest information…”
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.”
Lack of funding is a barrier to scaling access to palliative care.
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.
“We needed a united voice.”
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!”
More than 30 000 health care workers are supported in clinical decision making by PACK.
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.
Clinicians are prompted to consider palliative care alongside routine care for serious illnesses.
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.
Dr Camilla Wattrus, Knowledge Translation Unit, UCT (March 2020)
In a short series of blogs, we will be introducing the board members of Palprac ….
Dr Rene Krause
Palliative Medicine Course Convenor at UCT and Groote Schuur Hospital, Cape Town.
We are delighted to introduce Rene Krause whose passion for palliative care and medical education have made her the perfect person to sit on the board of our new NPO.
Mother, academic and practitioner
Dr Krause is a mother and a Family Physician who holds a masters in Palliative Medicine and a postgraduate diploma in Health Professional education. She is currently a senior lecturer in the Department of Family Medicine and Public Health at the University of Cape town and convenes of the postgraduate diploma in Palliative Medicine.
She also supervises masters students in Palliative Medicine and registrars in the Family Medicine Department during their Palliative Medicine rotation.
Incredibly, Dr Krause finds the time to work as a consultant in palliative care at Groote Schuur hospital, across this 900-bed hospital.
She has published many relevant papers contributing enormously to the development and growth of palliative care in South Africa. Her most recent appointment is to the board of the African Palliative Care Association.
Palliative care is comprehensive care
Asking Rene why she works in the field she says, “I work in palliative care because I love working with patients comprehensively. Palliative care is such a diverse discipline that enables me to learn something new on a daily basis.”
She is also a tree planter
Outside of work and parenting, Rene loves to plant trees. “Last year I planted 4 trees. This year I am planning to plant a row of Poplar trees, because when the wind blows they show their silver lining and their flexibility make them grow tall.”
Sounds like the ideal palliative care practitioner!
Palliative care is all about team, care-coordination and good communication.
I met Andrew Davies, founder of Signapps, through the ‘do-you-know-someone-that…’ grapevine while I was looking for a simple cloud based electronic medical record system (yeah right!) to use in my new venture of setting up a palliative care network in Stellenbosch.
Palliative care is all about team, care-coordination and good communication, which can be a tall ask in our siloed system. Reading about the headaches of complex EMR systems like Epic in the US, I was not sure that that was what I wished for either. Despite moaning daily about their tech habits with my children, I love a good tech solution. If it can be a local one, even better. So at our first meeting, when Andrew downloaded the app they had developed on my phone I was carefully optimistic. My enthusiasm has only grown since then. This would obviate the need for a shared medical record system, would be easy to get up and running and would not break the bank.
Quality care needs efficient means of communication between health care team members
Patients with complex care needs usually have multiple specialists involved in their care at any one time. GP’s are generally left out in the cold, not to mention the allied health professionals who play a critical role in a patient’s care. Care-coordination relies on, at best, a weekly multidisciplinary meeting, perhaps the chance meeting of a colleague in the hospital passage or receiving an email so many days or weeks later. Care-coordination is on the one hand imperative for quality care, but on the other hugely time-consuming, adding significantly to the number of non-billable hours spent on patient care.
From the patient perspective, they are having to deal with mixed messages from doctors, or being the messenger of their healthcare information from one practitioner to another. This does not necessarily harbour a feeling of safety or confidence in their medical team and often leads to frustration.
On Signapps, (‘cos Whatsapp is not legal, you know!) a virtual medical team is created around a patient case, allowing the team to communicate per text message as needed, when needed. No more hopeless phoning and returning of phone calls to colleagues. Radiology or laboratory results, images or photo’s, advance directives and all things relevant to the patient can also be pulled into the patient’s thread.
This relieves the anaesthetist from answering the surgeon’s mobile phone while he is operating and a new referral comes in. It allows the oncologist to give quick feedback about the patient’s third cycle of chemotherapy to the palliative care team assisting with symptom control. Or it allows the hospice sister to check in with the palliative care doctor, before suggesting opioid dose adjustments at the patient’s bedside. I shed a little tear of joy when all it takes is a text message to arrange home nursing for a patient in need. I simply add their care-coordinator to the group and ask. They have immediate access to the patient’s relevant information in the case file including phone numbers, medical aid details and ICD10 codes. Admin can really be the last straw in my day.
Referral forms and progress reports are easy to customize and complete in the patient thread.
One of the newer additions to Signapps is the ability to create forms on the desktop version, which can then be pushed or pulled into the patient’s thread. I use this to complete the IPOS form (the Integrated Palliative care Outcome Scale) on my mobile when I have seen the patient. It allows the team to know where the patient is at in terms of symptoms or other issues, while at the same time serving as a clinical follow up note. The forms are easy to create and customize, and could be used for follow up reporting, referrals or whatever is required.
It was fortuitous to meet the Signapps team, who also recently obtained a financial boost from Alan Gray for further developments. They are innovative and keen to create practical solutions for our local communication problems.
The app is intuitive to use (respectfully ask our 73 year old palliative care sister), and saves an enormous amount of time. Most importantly I believe this level of communication between practitioners must improve the quality of patient care, as well as the patient’s overall care experience.
Dr Krause is a Family Physician with a masters degree in Palliative Medicine and a postgraduate diploma in Health Professional education. She is currently a senior lecturer in the Department of Family Medicine and Public Health (University of Cape town) and convenor of the postgraduate diploma in Palliative Medicine.
Dr Krause’s research interest is the strengthening and integration of Palliative Care practices in hospitals. She is busy doing a PhD in the integration of palliative care in academic teaching hospitals within the Department of Family Medicine at UCT.
Palliative care is now part of universal health coverage and this is a huge leverage point to ensure palliative care is being implemented and integrated. APCA has done remarkable work in order to gain political buy-in at ministerial level from countries across Africa to implement palliative care. An Essential Palliative Care Package for Universal Health Coverage September 2019 was launched. This is document is to ensure minimal care is being deliver. Please review this document in detail. This document needs to be presented to all health facilities at all levels of care and implemented as an integrated aspect of mainstream care. Use it as a strong advocacy tool.
Visiting Kigali was an extraordinary and profound experience. It was inspiring to see the development, passion and effect of palliative care across the African Continent. Although a lot has been achieved the task is still big, with little funding and there are still relatively few people who are willing and able to take this on. The need to collaborate and network was one of the main themes of this conference. This collaboration and networking also need to be extended beyond the medical field to social welfare, education and justice. Factors that stood out at this conference were firstly the setting, secondly the fact that palliative care is now part of universal health coverage and thirdly the amount of UCT graduates presenting from across the continent.
Lastly, I was overjoyed to meet so many of the UCT students from across South Africa and Africa at the conference. They presented excellent work and it was wonderful to see their passion to ensure palliative care is delivered. A special congratulations went out to Tonny Mwaburi, from Lesotho, who won a price for the care he delivers in Lesotho. Prof. Gwyther received award of gratitude for being on the APCA board for 6 years and I was elected on the APCA board.
“Visiting Kigali was a profound experience”
Rwanda is a remarkable place. This country demonstrates how values and attitudes changes the whole country. Visiting the genocide museum illustrated how an atrocity occurred because of propaganda and because good people who did not speak out nor actively denounce hatred. However, this country is completely turned around because of strong leadership (many being women…), positive attitudes and valuing themselves to fix their own problems. Taking ownership and accountability of their problems shifted the country to vibrant, safe and exceptional country. Please visit.
I hope this short snippet of the APCA conference will inspire you to attend the next APCA conference, or even better, submit an abstract on all the wonderful work you are doing. See you in 3 years…where? Somewhere in Africa.