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ETV Judge for Yourself

Euthanasia – Judge for Yourself

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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.

Media enquiries can be directed to Andrew Francis andrew.francis@palprac.org 0827738467

PALPRAC AGM 2022

PALPRAC AGM 2022

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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.

People with pain.

Pain can be treated

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People with pain.

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).

Palliative Care South Africa

Palliative care access remains a problem, also in the South African private healthcare sector.

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Patients and their families facing serious illnesses often have to go it alone, and should be offered an extra layer of skilled, medical support called PALLIATIVE CARE. This should be the norm, from the time of diagnosis. This is not happening in the private healthcare sector. Why not and is there a solution?

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.

Dignity and Palliative Care during Covid.

Dignity and Palliative Care in the time of Covid

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Photo by redcharlie on Unsplash

By Dr Raksha Balbadhur, April 2020

“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 Unsplash
Photo 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

Spiritual Care 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.

There is never nothing we can do for anyone!

Dr Margie Venter in conversation

Dr Margie Venter, Palprac secretary, found her niche in palliative medicine.

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Dr Margie Venter in conversation

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!”

palliative care pages

How does PACK bring Palliative Care closer to Primary Care?

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The Practical Approach to Care Kit
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)

For more information visit https://knowledgetranslation.co.za/

 
Palliative Care Team Groote Schuur Hospital 2020

Introducing the palliative care doctors serving on the 2020 Palprac board

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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 2020
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!

Kigali APCA

Feedback from Kigali

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Dr Krause gives feedback from Kigali.

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.

She was elected on the board of the African Palliative Care Association during the 6th International African Palliative Care Conference in Kigali, September 2019. 

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”

UCT Palliative Medicine graduates

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.

Regards

René Krause