Today is Universal Health Coverage Day, promoted by the World Health Organization.
Palliative care is a fundamental human right and an integral component of Universal Health Coverage. WHPCA has compiled a factsheet you can reference in your advocacy efforts as we continue accelerating access and full integration of palliative care services in the health sector. DOWNLOAD WHPCA Factsheet
In palliative care, the theme is always, team. Palliative care is offered by a multidisciplinary team. Depending on the patient’s needs this team typically might include a combination of a doctor, a nurse, a social worker, a spiritual counsellor, psychologist, physiotherapist, dietician, occupational therapist, and speech therapist.
In 2021 PALPRAC expanded its membership base to include trained palliative care professionals from each of these disciplines. This aligns with our vision to enable access to quality Palliative Care for those people affected by serious illnesses. The response has been wonderful and we see new members joining our organisation, especially associate members, those who are healthcare professionals and are passionate about palliative care. Many of these members in turn engage within our systems to raise awareness in our healthcare system, offering access through their improved knowledge of palliative care. Our monthly PalliCHATS, CPD accredited webinars covering a number of themes, offer an engaging platform to review topics and discuss these topics within a peer-sharing environment.
PALPRAC offer both full and associate membership to healthcare workers in Southern Africa, depending on your palliative care training and support you offer within your practice. As the speciality grows in South Africa, more and more healthcare professionals are joining as associate members, these member benefits include,
Free access to CPD-accredited PalliCHAT Zoom conversations.
Access to palliative care information on our member’s platform.
Support advocacy in integrating palliative care in SA.
Newsletters, info on events, and other related news.
Your support will assist PALPRAC in continuing our advocacy as we pursue our vision to enable the access of palliative care to patients with serious illness and their families. As an incentive to new members, we are giving away one Kindle Paperwhite worth R3500 at the end of October to a lucky new member that has joined between 1 August – 31 October 2022. **
** The PALPRAC Executive Committee will oversee the draw under the supervision of our treasurer, the draw will be random and one winner will be drawn and notified telephonically. The committee’s decision is final.
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 firstname.lastname@example.org or 0827738467.
Jayne experienced the effects of poor communication skills whilst going through cardiac surgery at the age of 8.
“I would see this group of stiff, white jacketed doctors standing at the end of my bed talking amongst themselves and occasionally holding up a black x-ray to the light before striding over to my bedside and asking me to turn my neck to the side so they could look at my pulsating veins, ” she recalls.
Nobody thought to talk and explain to her what was happening and what the importance of those veins in her neck were. She knew she didn’t want to become one of “those” doctors!
After qualifying from Wits University, she went on to do several diplomas in Tropical Medicine and Hygiene, HIV Management and Palliative Care in 2016.
She spent 10 years working as a GP in Johannesburg, loving the involvement in the lives of families and seeing multiple pathologies. In 1997 (the era before anti-retroviral medication) she became more and more aware of the plight of people living with AIDS and the need to be able to offer good psychosocial support and communication to patients and their families when they became seriously ill.
“We would treat their symptoms as best as possible, offer a hand to hold or a hug when others were too afraid to. In retrospect we tried to offer dignity, also in their last days. We ensured that these patients would not be forgotten by doing small things like making of special memory boxes. It was during this HIV pandemic that I felt I could best practice holistic care, put a human touch back into medicine and not just prescribe antibiotics and vitamin tablets!”
She has continued to work in the field of HIV care and currently works at Helderberg Hospital, Somerset West in the Infectious Diseases Outpatient’s Department.
As HIV became a chronic manageable disease, she started to wonder about other illnesses that could benefit from the skills used in the early days of HIV and hence went on to study Palliative Care. She is volunteering at her local Hospice. She has also now begun to play a role in teaching other doctors and providing palliative care to patients at Helderberg Hospital. She particularly enjoys teaching medical students the skill sharing bad news compassionately but clearly, having conversations with patients about the hard things and being authentic with patients.
The COVID 19 Pandemic has also allowed her to ensure that the front-line doctors provide the necessary palliative care where needed.
Jayne is married to Garth and they have two teenagers, Rebecca, and Leigh. In her spare time, she loves to dance and watch Jane Austin films!
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
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?
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.
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.
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
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.
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
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.