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Kayla Bull

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How does a professional carer support a patient and family during serious illness?

How does a professional carer support a patient and family during serious illness?

We recently checked in with *Sly, a professional carer to get a glimpse into the daily routine and challenges while caring for patients in a palliative care setting. Here’s what she had to share:

What does a typical day look like for you when providing care for a palliative patient?

A typical day starts with reviewing the patient’s chart to check for any medication changes since my last shift. If my shift begins at 6:00 a.m., I go through the charts to see how the patients have slept. I then order their breakfasts and prepare their medication. Once breakfast is served, I administer the medication and begin with the basics of care, like bathing the patients and making sure they are comfortable. Throughout the day, I keep checking on them, provide pressure care, and change their positions as needed while staying alert for any emergencies.

What challenges do you face on a daily basis, and how do you overcome them?

One of the biggest challenges is answering questions from family members or loved ones. Sometimes, they ask about the patient’s condition, and it’s difficult to provide a clear answer, especially when the condition hasn’t changed. You never know how they will react, and you fear saying something that could hurt them. To manage this, I try to be as compassionate and honest as possible, always putting the family’s emotional needs first.

Can you describe a situation where you felt particularly rewarded or satisfied with your work?

One of the most rewarding moments for me was when a family member mentioned they would come back just to receive the same care and love we provided to their loved one. Another time, a patient called her daughter and said, “Please don’t forget to get Sly some sweets.” These small gestures of appreciation make all the hard work worthwhile.

How do you take care of your own well-being while providing such intensive care?

For me, taking care of my own well-being means surrounding myself with supportive people and making sure I get enough rest. I love sleeping, and it’s my way of recharging after a long and demanding day. Taking time for myself helps me stay strong and keep providing the best care possible.

The role of a professional carer in palliative care is both challenging and rewarding. It involves not only meeting the physical needs of patients but also navigating emotional challenges with their families. Despite the difficulties, the small moments of appreciation and connection make it all worthwhile.

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!

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.

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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.

Empowering Healthcare Professionals: Exploring the PG Diploma in Palliative Medicine at UCT

Empowering Healthcare Professionals: Exploring the PG Diploma in Palliative Medicine at UCT

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The Post Graduate Diploma in Palliative Medicine, offered by the University of Cape Town, has become a sought-after course nationally and internationally for those interested in developing their skills as palliative care practitioners. Tailored for experienced healthcare professionals, including doctors, nurses, social workers, and others, who seek expertise in caring for patients with life-threatening illnesses, the program is designed as a distance-learning course. The curriculum emphasises adult learning principles and incorporates practice-based techniques to enhance skills within the workplace.

The primary goal of the PG Diploma is to equip healthcare professionals with a comprehensive understanding of modern palliative medicine, thereby expanding access to palliative care within communities across South Africa.

We spoke to Dr. Fiona Govender, an ICU physician based in Durban, about her experience completing the course and asked her a few questions.

Why did you decide to do the PG DIP- Pall Med?

I was working as a medical officer in an ICU in Durban, and I was counselling families of seriously ill patients. I found that I was not shying away from difficult conversations. My department head then encouraged me to approach Dr. Julia Ambler, who works in pediatric palliative care. I contacted her to shadow her at her pediatric clinics and found that I loved the idea of palliative care. Dr. Ambler directed me to the course at UCT.

How has the PG DIP benefited you, your community, and your services?

The course has helped the ICU, as now I can offer better quality counselling to families. I’m more engaged in the ethical end-of-life discussions that occur in the ICU, and I take on the responsibility of teaching the rotating registrars how to break bad news and how to provide bereavement support. 

Based on what I have implemented, the quality of care in the ICU towards families has improved significantly, and to an extent, the patients. However, most of our patients are intubated and ventilated and usually sedated when we have these conversations, therefore limiting my role in the ICU to mainly symptom control.

Why should other practitioners consider the PG-Dip?

I think practitioners in Durban need to do the PG Dip. We have a large area underserved by palliative care, and most practitioners don’t understand what palliative care is. The course would benefit those seeking to enhance their communication skills, which is crucial for addressing the emotional complexities in palliative care.

What are you most looking forward to in the MPhil/ Why have you decided to do the MPhil?

I have enjoyed learning about and understanding the literature on palliative care. It’s a fascinating part that I shied away from previously. With support and guidance, UCT has given me an excellent introduction to research and taught me how to tackle it. There’s a lot of support and engagement from the faculty, which has been a great help for me.

I decided to pursue a more specialised field in palliative care because I enjoy what I do. Still, I am very limited in the practicality of ICU and symptom management, so I’m focusing my research on the practical aspects I can apply in the ICU.

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

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)

From Crisis to Comfort: How Social Workers Enhance Palliative Care

From Crisis to Comfort: How Social Workers Enhance Palliative Care

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What is the role of the social worker in palliative care?

The social worker is essential in coordinating care and support for the patient and their family. We focus on relieving the emotional and psychological distress of the patient and their family and help them come to terms with not only the diagnosis but also the prognosis. We also try to reduce the social burden that often comes with illness.

Ultimately, the goal is for the patient to begin to find meaning in their life and to ensure their wants and needs are met as far as possible- this is what I consider quality of life.

We also support the family by assisting them with getting “affairs” in order- whether it be their will, funeral policies, advanced care directives, or social grants, we will help them.

What challenges do you face as a social worker?

In my experience, having difficult conversations is challenging for all involved. We always encourage transparency from the patient, their family, and the healthcare team. We want the patient and their family to be part of the decision-making team; this can assist us in addressing any questions and emotional distress, repairing relationships, and addressing any “unfinished business.”

What do you find rewarding about being a social worker?

Working with other medical professionals (doctors, nurses, oncologists) and allied healthcare professionals is satisfying. Working within a multidisciplinary team and the passion I see from my colleagues is remarkable. I learn so much from them.

Do you have any encouraging words for patients and families?

Yes, never lose hope; be open to new opportunities to grow, heal relationships, and focus on things that MATTER. Managing a disease can be challenging and a powerful time for spiritual healing.

Can you recount an experience where you supported a patient or family?

The treating medical team referred a patient to me after she spent three months in the hospital due to her progressive cancer diagnosis. She had informed her husband, parents, and siblings that she was receiving curative treatment.

Before she was discharged, the hospital team disclosed the patient’s true prognosis to the family. They called me in for emotional support. I sat with the patient and her husband. I explained how important it is to have these open discussions, address unfinished business, and express love for one another.

My patient was very emotional- she explained that she has never been one to communicate or verbally express herself. During one of our sessions, she told her husband how much she cared and thanked him for caring for her.

I encouraged her husband to open up and explain to her parents and sisters to do the same. Supporting her and her family and seeing how everyone could share their feelings brought me immense gratitude.

 

 

By: Connie Zulch

Palliative Care Social worker

Nourishing Words: The Role of Speech Therapists in Feeding and Communication Support

Nourishing Words: The Role of Speech Therapists in Feeding and Communication Support

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What Can a Speech Therapist Offer in Palliative Care?

Speech therapy in palliative care provides essential support, with speech therapists helping patients communicate, even in the early stages of a diagnosis. We help patients express their wants and needs, enabling them to participate in their care and convey their values to both their families and healthcare team. If verbal communication deteriorates due to the disease process, we work with individuals to maintain meaningful communication and social interactions for as long as possible.

Another key aspect of our role is addressing swallowing difficulties. Eating and drinking hold deep significance for most people—I’ve yet to meet someone who didn’t consider it an essential part of life. In palliative care, we prioritise the patient’s values and expectations to ensure eating remains as safe and enjoyable as possible.

We also support families in modifying diets to help patients continue enjoying favourite foods. Food provides comfort for many, and we aim to preserve that comfort throughout the palliative journey.

Are there barriers faced by Speech Therapists in Palliative Care?

Many people mistakenly believe that speech therapists primarily work with children, but our scope is much broader.

One of the biggest challenges we face is being consulted late in the disease process, often when swallowing and communication difficulties are already severe. At this point, deterioration may have progressed to a stage where support is limited and enjoyment is compromised. For example, if a patient can no longer communicate clearly due to illness, it becomes difficult to determine their wishes regarding eating, drinking, and communication. In neurodegenerative diseases such as dementia or motor neurone disease, establishing alternative communication methods late in the disease can be particularly challenging.

Another misconception is that speech therapy is only about improving speech. In conditions like motor neurone disease, where speech will progressively decline, our focus shifts from “fixing” speech to providing adaptive support and communication alternatives.

Additionally, there is a widespread belief that feeding a sick person will improve their condition or extend their life. However, artificial nutrition and hydration (ANH) are not typically indicated at the end of life. These discussions with families can be complex but underscore the importance of understanding and respecting the patient’s wishes early on.

Can you share an experience with a palliative care patient where speech therapy was helpful?

I once worked with a patient diagnosed with motor neurone disease early in her journey. During our initial conversations, we discussed the likelihood that she would eventually be unable to eat or drink by mouth and explored the risks and benefits of tube feeding. From the outset, she was adamant that she did not want a feeding tube under any circumstances. My role then became supporting her and her family as they processed and accepted her decision.

Ultimately, she passed away without ever receiving a feeding tube. Toward the end of her life, all she wanted was mashed potatoes and coffee, her favourite comforts. There was no judgment; our focus was on respecting her wishes. As long as she could enjoy those, we honoured what mattered most to her.

Can you share any tips with palliative care patients and their families?

I always encourage patients and families to reach out early after receiving a serious illness diagnosis. This doesn’t mean committing to ongoing therapy but rather starting a conversation about what to expect, possible outcomes, and available support.

If swallowing is a concern, families should watch for signs of difficulty—such as choking, coughing after meals, or unusually long chewing times. If these signs are present, consulting a speech therapist can help reduce the risk of complications like aspiration pneumonia and unnecessary hospital admissions.

Lastly, I cannot overstate the importance of maintaining oral hygiene. It may sound minor, but oral hygiene plays a crucial role in swallowing safety. If someone has difficulty swallowing and aspirates food or drink into the lungs, the presence of bacteria in the mouth increases the risk of pneumonia. For this reason, I advise brushing teeth at least three times a day for those experiencing swallowing problems.

Author: Teresa Teixeira, Cape Town based Speech Therapist

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