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We can affect the journey

Palliative Care Awareness Day in Polokwane: A Heartwarming Success

The PALPRAC team was excited to head to Polokwane for a Palliative Care Awareness Day, hosted on the 5th of December 2024 in partnership with the Limpopo Department of Health. This event brought together participants from all corners of the province, with some travelling from as far as Groblersdal to join the occasion. Participants were enthusiastic and friendly, setting the tone for an impactful day. (We must admit, the PALPRAC team gave themselves a little pat on the back for the smooth rollout of our new GlueUp electronic registration process!)

It was obvious that a solid foundation for palliative care had already been established in the region. Prof. Gert Markinowitz, Dr Thamba Khangale and the team have been successfully running online palliative care training sessions for healthcare professionals in Limpopo, many of whom were present at the event. Adding a splash of inspiration to the day were the vibrant t-shirts designed by Dr Rapudi Morifi, Clinical Manager of Polokwane Provincial Hospital, featuring the slogan: “We cannot change the outcome, but we can affect the journey.” Worn proudly by the team, these t-shirts effectively create awareness for palliative care in their place of work.

The turnout was encouraging, with around 72 healthcare professionals attending. Despite a packed schedule of lectures, the hall stayed full until the very end—perhaps the superb lunch helped keep everyone going!

The agenda featured expert-led discussions on essential topics, including pain management, advance care planning and ethical decision-making in palliative care. During the Q&A sessions, attendees opened up about the challenges they face in the field, including the lack of awareness about palliative care among colleagues, patients, and families, which often leads to late or missed referrals. Access to oral morphine was highlighted as another significant challenge requiring urgent attention.

Despite these hurdles, attendees displayed a strong commitment to improving palliative care services in the region. Their collaborative efforts and clinical leadership continue to advance access to care for patients in Limpopo, even in the face of resource constraints.

Palliative care isn’t rocket science, but it is complex, focusing at its core on providing compassionate support to individuals with serious illnesses. However, it can sometimes feel like an uphill battle within a healthcare system that is so heavily focused on curing diseases. Events like this are instrumental in fostering networks of support, enabling practitioners to exchange ideas and strategies, and reinforcing a sense of shared purpose. The palliative care community’s strength lies in its collaboration, resourcefulness, and dedication to patient-centered care, as this event aptly demonstrated.

The PALPRAC team extends its gratitude to our colleagues in Limpopo for their efforts in organizing this event and to all the attendees for their active participation.

If you’re interested in hosting a similar awareness day in your region, don’t hesitate to reach out to PALPRAC—we’d love to explore how we can work together to make it happen!

Watch this short video of the day’s highlights:

My Experience Caring for My Friend with Advanced Cancer

My Experience Caring for My Friend with Advanced Cancer

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I’ve known *James for several years from work. He doesn’t have a close relationship with his family, and there aren’t many people he could call close friends either. When his cancer got worse, he asked me to be his proxy. I didn’t fully understand what that meant, but I said yes. After his last hospital stay, it was clear that James needed constant care, so I invited him to stay with me for a while.

The Challenges of Being a Caregiver with No Experience

Caring for James was a huge challenge, especially since I had no experience. The first thing I struggled with was my physical strength—James was much bigger than me, and I was worried about how I’d manage to lift him if needed. It was also tough to balance giving him dignity while handling his intimate needs. I learned that I had to respect his choices, especially when it came to things like eating. I could only encourage him so much before I had to step back and let him make his own decisions. Balancing work and caregiving was another big challenge, one I hadn’t anticipated.

How I Took Care of Myself While Caring for Someone with Medical Needs

I was fortunate to have an incredible support system. My partner was very understanding and stepped in to help with James when I was too busy or too tired. We also had the help of a home-based care team. They came in regularly to check on James’s physical and emotional well-being and offered me a lot of guidance. Their support made it easier to handle the little things that were keeping me up at night, like worrying about his oxygen nasal prongs falling out. It sounds small, but they even suggested taping the prongs to his cheeks, which helped me sleep a bit easier. Having this support made my life as a caregiver much more manageable.

Here’s the Advice I Would Share with Those Considering Caregiving

I know that for some people, caregiving isn’t a choice but a necessity. For those who find themselves in this position, I encourage you to seek help from local agencies like home-based care and build a good support system around you.

If you’re thinking about taking on the role of a caregiver, I would say take time to fully understand what you’re committing to. I didn’t realise how physically and emotionally demanding it would be. I also didn’t realise how much help I’d need. It’s easy to think that feeding someone or helping them to the toilet is straightforward, but it’s so much more than that. The person’s health condition at the time also greatly impacts your role as a caregiver. Whatever your situation, don’t hesitate to reach out for help and build a network of support. It makes all the difference.

Celebrating World Hospice and Palliative Care Day 2024 with PALPRAC

Celebrating World Hospice and Palliative Care Day 2024 with PALPRAC

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A huge thank you to everyone who contributed to PALPRAC’s e-book project in celebration of World Hospice and Palliative Care Day (WHPCD)! This year’s theme, “Ten Years Since the Resolution: How are we doing?”, encouraged us to reflect on how far we’ve come since the 2014 palliative care resolution, while acknowledging the ongoing challenges we face.

Our new e-book is more than just a publication; it’s a heartfelt tapestry of essays, artwork, and personal reflections that capture our shared passion and commitment to advancing palliative care. Each piece highlights the strides we’ve made, the patients we’ve supported, and the resilience of our community.

We invite you to explore this unique collection through the link provided here. We hope it inspires you to keep pushing forward in this field and reinforces the power of compassionate care. Let’s continue working together to enhance the quality of life for those who need it most. Thank you for being part of this journey with us!

Does your healthcare team know what matters most to you? If not, be sure to tell them.

Does your healthcare team know what matters most to you? If not, be sure to tell them.

Written by Dr Margie Venter, palliative care doctor.

First published in Buddies for Life magazine

I was recently fortunate enough to pack my bags and travel with my family. It was so good to plan for this, knowing it wouldn’t be Covid-cancelled. At the same time, I have three boys, and in the midst of planning and packing, I sometimes wonder whether the chaos is actually worth it! One gets hangry, so we need enough snacks. Another usually forgets to pack something warm — he hates anything long and “claustrophobic” — and then inevitably gets cold and needs to borrow a jersey. For everyone’s sake, devices need to be fully charged for the long road. And because I like the smaller, winding roads, I will not be forgiven if we get lost.

Going on any journey means planning ahead. Planning for what is likely, but also for the “what-ifs” (which is why I tend to overpack). I’ve often thought this a much more useful metaphor for serious illness than the war metaphor we use more often. Wars imply winners and losers, and often leave destruction behind. Journeys can be gentle strolls, even if long. At other times, they’re more like difficult hikes — uphills with only the short relief of a plateau now and then. It can feel as though one never quite reaches the top to appreciate the view. Sometimes there are unexpected hailstorms. Sometimes a break in the clouds brings sunshine. Sometimes it would have been better to turn left. Either way, it helps to plan a little, knowing where you’re going and what you should pack.

In the same way, when someone is on a journey with a serious illness, many find it helpful to talk about what to expect ahead, so they can do some planning. It’s also important for your medical team to know what matters most to you, so that any treatment recommendations can be tailored accordingly. This isn’t the same for everyone, and as medical professionals, we sometimes leave it to assumption rather than asking. This is what we call a “serious illness conversation.”

You will have heard the terms Advance Directives, Advance Care Planning and Living Wills. This conversation falls somewhat into that category, but it’s less generic and more personal. It’s a conversation between you and your healthcare team that focuses on your goals and values for your health. These views might change as you move through different parts of your journey, so it’s worth having more than once. You might also want to involve those you care about. Documenting and reviewing the conversation is helpful — something to refer back to when you, or others on your behalf, need to make difficult decisions.

These are some of the questions people have found valuable to discuss:

  1. What would you like to know about your illness and what’s likely ahead?
  2. What kind of information would help you make decisions about your future?
  3. What does quality of life mean to you? Put another way, what does a good day look like?
  4. What matters most to you, and what would your most important goals be if you became sicker?
  5. What are your biggest fears or worries as you think about the future and your health?
  6. If you become sicker, how much are you willing to go through for the possibility of extra time? What kinds of medical care might you not want?
  7. How do you want to involve the people you care about?
  8. Is there someone you trust who could make decisions on your behalf if you’re unable to — a so-called health care proxy?

Contrary to what you might expect, once you take the first step, talking about these things more often brings relief rather than raising anxiety. It gives people more control, and helps your medical team make wise treatment recommendations — not just medically correct ones.

Know that it’s never too soon to talk about these things. More often, we talk too late. Your healthcare team might never bring up this topic — it may be up to you to start the conversation: “Doctor, I want to talk to you about my goals of care and living with my serious illness.”

More information and tips can be found at: https://theconversationproject.org/

Finding Purpose and Support in Palliative Care: A Personal Journey

Finding Purpose and Support in Palliative Care: A Personal Journey

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Two years ago, I received a diagnosis that changed my life: colon cancer. Since then, my journey has had many challenges and uncertainties. For me, the essence of palliative care lies in the ability to continue living life on my terms despite the obstacles. My family, especially my grandchildren, son, and daughter-in-law, have become my driving force, providing me with purpose and strength during tough times.

The advice I can offer to anyone facing a similar battle: hang in there. Believe in your ability to overcome, and never underestimate the power of prayer. Trust in the expertise of your healthcare team—they are your allies in this fight.

In palliative care, continuity of support and care has been significant. I value having a consistent team I can trust at the hospital and those offering home-based care. Creating strong, trusting relationships with my healthcare team has helped me physically and psychologically, it has made me feel as if I am part of the team.

In my experience, palliative care isn’t just about managing symptoms—it’s about reclaiming control over my life. It’s about finding ways to live despite the circumstances. And with the unwavering support of my loved ones and healthcare team, I am determined to do just that.

So, to anyone embarking on this journey, remember: you are not alone. With faith, perseverance, and the right support system, there’s no obstacle too significant to overcome.

 

Shared by: A cancer patient in Cape Town

Podcast highlights growing access, and remaining gaps, in SA palliative care

In a HASA-sponsored podcast, Dr Lungi Nyathi of value-based care provider Alignd discusses how access to palliative care is growing through private medical schemes, while the public sector remains patchy and trained providers stay scarce, with fewer than 100 palliative care doctors nationally. She also shares that families who use palliative care, even late in an illness, generally describe it as a meaningful source of support.

Navigating Emotions and Support: Insights from a Palliative Care Counsellor

Navigating Emotions and Support: Insights from a Palliative Care Counsellor

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What role do you play in the palliative care setting?

As a counsellor in the palliative care setting, I focus on patients’ and their families’ emotional and social needs. I’m particularly passionate about supporting families who are often excluded from the healthcare team. I also help coordinate referrals and prioritize the psychosocial wellbeing of both patients and their families.

Can you share a patient story where you made a difference in a patient’s life?

A woman recently visited my office to collect her chronic medication. During our conversation, I inquired about her mother’s well-being, as I knew her mother had been ill for some time. She shared that her mother was experiencing ongoing confusion. Taking a moment, I sat her down and listened to her concerns. 

I took the opportunity to offer support and education regarding her moms condition. We discussed strategies to comfort her mother, such as spending quality time with her and expressing appreciation. Following our discussion, I provided practical advice—simple gestures like sitting with her, gently brushing her hair, and simply being there.

Often, families are left out of the counselling space and must be prioritized as part of the healthcare team. The short amount of time I spent with this lady meant the world to her; she later came and thanked me for listening and acknowledging her fears.

What are the common challenges you face in the palliative care setting?

One common challenge in palliative care is helping patients and families come to terms with their diagnosis and prognosis. When someone is diagnosed with a serious illness, it can be challenging to move past those words. Life continues, and there is still so much living to do. Sometimes treatments don’t work anymore, and the decision to stop them becomes necessary; it can be difficult to accept, but there is always something we, as palliative care practitioners, can do to ensure people live as well as they can. 

Living well doesn’t come without uncomfortable conversations, but we can move forward once we get that out of the way. Building trusting relationships from the start is important for these conversations to happen; we don’t give up on patients and families; we offer them hope through supportive care.

Any tips for patients/families to support wellbeing or care

For struggling family members, remember to take care of yourself too. You can only help others if you’re well. Take breaks to recharge.

To patients, know that you’re not alone!

 

By:

Silindokuhle Makhathini

Palliative Care Counsellor

KZN (Rural)

PAINSA

Highlights from the 2024 PainSA Congress in Durban

The 2024 PainSA Congress recently took place in Durban (17th-19th May 2024) and was a resounding success. Esteemed colleagues from around the world gathered to share valuable insights and discuss advancements in pain management. 

PainSA, the South African chapter of the International Association for the Study of Pain, aims to enhance pain management across Southern Africa. This year’s theme, “Personalised PAINCARE,” focused on a biopsychosocial and spiritual approach to pain management. The congress featured comprehensive assessments and individualised management plans to reduce pain and reintegrate patients into society.

A significant part of the event was dedicated to palliative care, with sessions for both adults and children. These sessions were well-attended, showing a growing interest in and recognition of the importance of palliative care.

PALPRAC members made a strong impression with their presentations on various topics such as dignity in care, cancer pain management, the pain ladder, and addressing burnout in ICU and neonatal care. These discussions underscored the necessity of interdisciplinary approaches in managing severe and complex pain cases.

In addition to the enriching presentations, the congress served as a platform for networking, allowing attendees to form new relationships and partnerships aimed at advancing pain management practices. For more details on the sessions and speakers, see the full programme on the PainSACongress2024 website https://painsa.org.za/2024-painsa-congress/

This year’s congress highlighted the ongoing need for innovative approaches and collaborative efforts in pain management, ensuring that patients receive holistic and effective care tailored to their unique needs.

 

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Breaking the Barriers: Promoting “phila unethezeke” (palliative care) Awareness in Khayelitsha

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According to community members, palliative care in Khayelitsha has long been associated with death, making it a sensitive topic for the community. Cultural and spiritual beliefs about death contribute to barriers in accessing palliative care resulting in many community members avoiding discussion and options for palliative care. Our goal in Khayelitsha is to change the community’s perception and tackle some of these barriers, as many palliative care patients only receive support from immediate family members, not the wider community.

Health Promotion Day in Khayelitsha: Who Was Involved and Why?

Health promotion enables people to make informed decisions regarding their health. The health promotion event was organised by fourth-year medical students from the University of Cape Town (UCT) and Judith Mahlangu, Khayelitsha Site Facilitator and Researcher at UCT’s Department of Family, Community and Emergency Care, in partnership with The Association of Palliative Care Practitioners of South Africa (PALPRAC).

A diverse group of participants were invited to join the Health Promotion initiative. There were two components to this initiative. First, students and PALPRAC spent the morning on the live, local radio station, Zibonele FM, to introduce the topic of palliative care to listeners, who had the chance to send in their questions.

Some of the questions and concerns raised by the community:

-Palliative care is not for everyone; my child suffered and was not supported after being released from hospital. (Concern from the radio audience)

-Some families believe that if someone is serious ill, people should not be visiting the sick patient because they bring bad spirits.

-Why is it important that we are talking about caring for people who are dying?

-How do we (carers and general community) help someone who needs palliative care?

-What can we do, because we are supporting our family member who is sick, but the community is scared because they think a sick person is bewitched?

The second half of the project included an information session where community member, persons with disabilities, the elderly, carers of palliative care patients, community health workers (CHWs), and neighbourhood watch members could join the team to discuss the basics of palliative care. Bringing this community group together was crucial for raising awareness and giving marginalised, vulnerable individuals a platform to express their concerns. We aimed to promote inclusion to ensure that everyone felt heard and supported.

Goals and Achievements of Health Promotion

The primary goal was to challenge the barriers surrounding palliative care in Khayelitsha. The project created a space where the community could ask questions and discuss palliative care openly, marking a significant step towards normalising conversations about palliative care and providing better support for the community.

Our long-term goals for the Khayelitsha community includes; continuing to raise awareness about palliative care, starting support groups, and ensuring that local resources in Khayelitsha include palliative care support. We aim to have local clinics deliver essential palliative care medication to patients at home and support patients and their families emotionally and physically, addressing issues like poverty and mental health. Academically, we want to include the community’s voice in the curriculum, collect evidence on the impact of palliative care, and present our findings at conferences.

Gratitude

We extend our heartfelt thanks to Sr Shole of Khayelitsha District Hospital, Community members, Zibonele FM, PALPRAC, and UCT for their support and sponsorship. Together, we are working towards a future where everyone can, in palliative care, “phila unethezeke” –live comfortably.

Breaking Barriers: Dr. Natsayi Mujuru’s Commitment to Enhancing Palliative Care Access in Zimbabwe

Breaking Barriers: Dr. Natsayi Mujuru’s Commitment to Enhancing Palliative Care Access in Zimbabwe

In our final blog series on the PG- Dip Palliative Medicine offered by UCT, we spoke to Bubbly Zimbabwean-born family physician Dr Natsayi Mujuru, who completed her PG Dip in 2019 and is currently completing her MPhil. She is an esteemed physician based in Bulawayo, Zimbabwe, working in a hospice and community-based setting. We sat down to ask her about her experience completing the diploma and its impact on her community.

Why did you decide to do the PG DIP course?

My interest in palliative care dates back to my experience during my master’s in Family Medicine, where I had a brief yet impactful encounter with the topic of palliative care. This exposure ignited my enthusiasm for a discipline that embraces a holistic patient care approach, mirroring my professional ethos. 

Pursuing the PG Dip course was a natural progression for me. Before working at a hospice in Zimbabwe, I had dedicated a year to volunteering there. While working alongside my colleagues, I observed the value they attributed to the diploma, particularly those based in Harare. However, in Bulawayo, where I worked, there needed to be more individuals with palliative care expertise.

Recognizing the potential benefits it could bring to our branch, I felt compelled to undertake the course. It was also an opportunity to enhance the quality of services and my proficiency in palliative care. 

How has the course benefited you, your community and your services?

The diploma has had a profound impact on both my personal development and the services provided to the community in Bulawayo. 

On a personal level, the emphasis on communication skills within the course has been invaluable, enhancing the relationships I cultivate with my patients, colleagues, and family. 

Professionally, I’ve been able to mentor colleagues, elevating the quality of our hospice’s services. Over the past few years, our hospice has initiated training programs for palliative care doctors and other professionals within local hospitals and tertiary hospitals across Zimbabwe.

Why did you decide to do the MPHIL?

Pursuing the MPHIL was a logical progression for me, aligning with my commitment to advancing palliative care in Zimbabwe. Despite the gradual development of palliative care services in the country, there remains a critical need for advocacy at all levels. 

Beginning the program in 2023, I recognized the potential of the MPHIL to equip me with the necessary advocacy skills. Specifically, I aim to address issues such as securing coverage for palliative care services through collaboration with medical aids and advocating solutions to the morphine shortage in Zimbabwe. By undertaking the MPHIL, I am better positioned to assume enhanced advocacy roles and drive positive change within the palliative care landscape.

Please share any comments on the challenges and benefits of palliative care in Zimbabwe.

Significant progress has been made in integrating palliative care into the public healthcare system in Zimbabwe, primarily driven by the National policy framework of 2019. Palliative care is now incorporated into various disciplines’ strategic documents, including those of surgeons, obstetricians, and anaesthetists, TB and cancer strategies, nursing curriculums, and national in-service training programmes. 

Despite these advancements, challenges persist. The shortage of morphine stock remains a pressing issue, limiting access to essential pain relief medication. Additionally, there is a critical need for heightened awareness among healthcare professionals and patients regarding the benefits of hospice care. 

The stigma surrounding hospice support still prevails among some individuals, reminding us of the importance of ongoing education and advocacy efforts to promote understanding and acceptance of Palliative care services.

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