Denischka Uys is a Registered Nurse who worked on cruise ships for three years after being qualified and gaining further experience in the ICU setting. Having worked abroad offered the insight that there is much more to patient care than just the hospital setting. Denischka returned home and further her studies in advanced wound care and lymphoedema. Dr. Hughes sparked her interest in palliative care while working at a rehab facility and so her palliative care journey began.
“Of all the courses I have done the palliative care course has broadened my skills and interest in the patient as a whole and not just the hole in the patient and I would recommend it to any healthcare worker.”
Denischka completed her diploma in palliative medicine at UCT and currently works as an advanced wound care practitioner in a private practice in Cape Town.
PALPRAC members can attend for FREE of charge, and PALPRAC Guests are charged R50/session to attend.
To qualify for a CPD Certificate, participants must be present for 70% of the webinar.*
If you would like to join PALPRAC as a Member, please visit our PALPRAC website, where you will find more information about our membership categories, member benefits, valuable resources, and upcoming events members can attend for free.
If you’d like to JOIN PALPRAC as a member, please visit https://bit.ly/3lmRtqV or contact us at info@palprac.org
Join Dr Louise Walker and the PALPRAC team in an informative webinar as we discuss breaking bad news in Zulu speaking cancer patients.
Breaking bad news (BBN) is a common event in palliative care and communication skills are critical to good practice of the discipline. There is a dearth of guidance for communicating with African language/cultural groups. The qualitative study discussed in this webinar highlighted phrases & techniques in the international BBN literature, adapted them for use with Zulu speaking cancer patients & discussed their appropriateness with this group of patients. An understanding of Zulu speaking cancer patients’ BBN experience was also gained. Valuable insights regarding the perspectives of Zulu speaking cancer patients was gained.
While this study focuses on one specific African language, valuable information regarding BBN in cross-cultural and cross-language situations can be gleaned from it. Findings encourage clinicians to reflect on their patient population & tailor BBN to the specific scenario.
** The PALPRAC Webinar Series is available to FULL & ASSOCIATE PALPRAC Members, and registration is open on our Membership ‘self-serve’ platform. To qualify for a CPD Certificate (2 CPD points), participants must be present for 90% of the webinar.
Please login and register for the event via the events page on your Membership homepage.
At the start of the COVID 19 epidemic in South Africa I was ready to work wherever a palliative doctor was needed. However, as I started to understand more about the groups at risk of doing badly if infected, I had to have a rethink. I am 65 and feel perfectly healthy but have several risk factors in addition to age. The prospect of having a conversation with my work colleagues about what to decide caused great anxiety and the term moral distress applied to what I was struggling with.
An email came from Medical Brief announcing help for health care workers struggling with the impact of the pandemic on their mental health. Was it fair to ask for this support when I wasn’t at the clinical coal face?
I sent the application for a psychologist to contact me. Very soon, I had a reply and the offer of up to 4 zoom consultations. I have had a really helpful and professional therapist and the semi anonymity of Zoom has been a positive for me.
There are two contradictory messages for health care workers: either “put on your own oxygen mask first”, stay at home if you are at high risk or the health worker hero who is not daunted by fear. The moral distress of facing these choices has not gone away, but I have been helped to live with my decision.
I encourage all health care workers who are facing their own distress during the pandemic to recognise when they need help and to ask for it. There are very supportive and professional people willing and able to help.
My sincere thanks to the organisations and to the psychologists who have volunteered their professional services.
Dr Janet Stanford, Knysna Hospice
Mental Health Support for Healthcare Workers
Dear Colleagues
Last week a communication was sent out, which requested volunteers to sign up to provide mental health support via the Healthcare Workers Care Network (HWCN). This programme is a collaboration of the South African Medical Association (SAMA), The South African Depression and Anxiety Group (SADAG), The South African Society of Psychiatrists (SASOP), The South African Society of Anaesthetics) and The Psychology Society of South Africa (PsySSA).
The purpose of this programme is to provide mental health support to all healthcare professionals requiring care during this challenging time.
Should you require such support, please register here
“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.
How is palliative care relevant during the Covid pandemic?
“We also have a responsibility to protect our vulnerable palliative care patients …”
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.
What does dignity mean?
Dignity is an unconditional inherent worth possessed by ALL living beings – intrinsic dignity.
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:
Lack of basic human needs such as food, running water, shelter, money, transport to medical facilities and access to basic medication can undermine the dignity of the majority of our patients. The lockdown has bought time for the government to strive to provide such facilities to minimize the extent of the assault of the lack of these amenities on the dignity of South Africans.
Alongside treatment-focused interventions for those who qualify, the frequent assessment and vigilant management of symptom distress such as fever, breathlessness, anxiety, and pain are vital to maintain the dignity of all categories of patients.
Availability of medicines (be it enteral or parenteral) to alleviate symptom distress especially opioids and benzodiazepines is essential for the effective provision of dignified palliative care.
PPEs are also essential to protect our COVID negative patients, and the families caring for COVID positive patients at home. A safe family means a happy patient.
If our healthcare system is overwhelmed by the COVID-19 disease burden, triage may become necessary to determine who is to receive critical care or supportive care. In palliative medicine, death is considered a normal phase of life. It is how we approach and support the dying patient at this time that becomes paramount. For those patients who are for supportive care, all measures must be taken so that they receive compassionate comfort care, and are free from physical and psycho-existential distress until they die.
Photo by Imani on UnsplashPhoto by George Kantartzis on Unsplash
Psychosocial Considerations:
Psychosocial distress is a major factor that diminishes dignity in the dying. Patients are afraid (of death, loss of function, loss of role, abandonment by medical staff and family, symptom distress, concern for loved ones, being a burden on others etc.) and these fears need to be allayed.
There is the potential danger of the COVID positive patient being stigmatised and disrespected.
Even in this time of potential chaos and time constraints, psychosocial and spiritual needs should be identified, explored, and honoured to the best of our ability with a supportive empathetic listeneing and referral for counselling.
Honest, clear, compassionate communication which begins with the Advanced Care Planning (see attached) gives the patient autonomy and grace in dying. This conversation can begin with patients at risk of getting serious illness so their wishes can be respected – this also affords family members peace of mind when critical decisions need to be made.
COVID-19 poses an added challenge to dignity in palliative care as isolation is mandatory, thus dying patients suffer alone, without the support of touch or the company of their loved ones. This may make them feel more vulnerable as their loved ones are not present to support and advocate for their needs. However may be possible, safe means need to be explored to help families make contact with their dying loved one. No one should suffer and die alone. The innovative use of communication technology (e.g. Whatsapp/Video calling, tablets, Zoom or Skype) can help people maintain contact with loved ones, and thus support their grief and bereavement. They need to say goodbye and bring closure for their peace of mind.
Knowing that their loved ones are also supported to bring closure can also bring relief to those that are dying.
Due to social isolation families can experience complicated grief from not being able to support or comfort their loved ones in their last days. It is difficult for them to experience closure. Thus bridging this gap in communication is merciful and it is important to offer best compassionate care to both the patient and the family unit.
An interdisciplinary approach that includes community counsellors, social workers, psychologists and chaplains are essential to relieve the burden on dignity at the time of COVID
SpiritualCare Considerations:
Living in our culturally diverse Rainbow Nation, death is an important phase of life and entails many rituals/traditions, customary to the patient’s culture/religion. This is not to be slighted with COVID-19 as it may result in aftermath for the families.
Hospital and community chaplains and social workers should pay an active role in ensuring there is open honest communication and understanding of relevant family members (especially about the handling of the bodies).
This spiritual care will build trust and cooperation.
Families should be supported so that fundamental aspects of traditions that bring meaning are respected whilst maintaining infection control and safety spiritual care.
“Death is an important phase of life.”
Care of the Caregiver:
If symptom distress is not attended to adequately and there is suffering, or with triage and rationing of medical equipment, there can be mental trauma experienced by patients, families/caregivers, and health care providers.
Caregivers and Healthcare providers need to have support structures in place and need to debrief as compassion fatigue, low morale and dissociation can set it in if not monitored.
A resilient dignified family caregiver or healthcare worker ensures dignity to the patient.
What do healthcare professionals need to remember?
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.
Palliative care (PC) is a branch of medicine that focuses on the care of people with serious or life threatening illness. So why would we need it in a situation where 80% of sufferers have mild illness and recover quickly?
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.
What are these principles and how do they apply to the present time?
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.
Palliative Care uses an integrated approach – there are 3 layers of integration:
The patient is seen as a whole person. Physical care is considered together with psycho-social and spiritual care.
The patient and family/close contacts are regarded as a single integrated unit.
The Healthcare team is an integrated unit to ensure that all the needs of the patient and family are considered. PC is provided alongside standard medical care and includes active treatment of reversible condition
Palliative Care can be applied in any setting
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.
Planning ahead minimises stress and assists with decision making
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
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)
Paediatric palliative care doctor in KZN and co-founder of Umduduzi – Hospice care for children
The Umduduzi Team, Julia Ambler on far the right.
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.
Moving back to Durban, she is overwhelmed by volume of children requiring palliative care.
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.
She consults in both private and public sector.
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.
Communication skills are essential.
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.
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.
Groote Schuur Hospital palliative care team
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.
Signapps modules
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.
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Palliative care is all about team, care-coordination and good communication.
