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End-of-Life Planning: A Legacy of Clarity and Care

End-of-Life Planning: A Legacy of Clarity and Care

Though death is a painful reality we instinctively avoid, delaying preparation and planning can rob us of control and clarity when facing uncertainty. Avoidance may feel protective, but in fact, avoiding these important matters can inadvertently cause more harm than addressing them head-on. Thoughtful planning can provide some clarity and peace while also easing the transition for the family after the patient has passed. 

Why is end-of-life planning important?

Failing to plan for end-of-life can lead to significant challenges for both the patient and their loved ones. Below are the potential consequences of not planning, along with how proactive preparation can help prevent them.

Loss of control over final wishes: 

Without documented preferences, decisions regarding medical care, burial, cremation, or memorial services as well as other important decisions may be left to others, increasing the risk of choices that do not align with your values. Planning ensures that your personal preferences are clearly outlined, allowing your wishes to be honoured.

Uncertainty in medical care:

Without advance healthcare directives, medical professionals may have to make critical decisions without clear guidance, potentially resulting in unwanted treatments. Additionally, loved ones may be placed in the difficult position of making medical choices on your behalf, carrying a significant emotional burden. Establishing medical directives enables you to specify treatment preferences, ensuring that healthcare providers follow your instructions and alleviating uncertainty and distress for your loved ones.

Legal and financial implications:

The absence of a will or estate plan can result in assets being distributed based on default legal processes, which may not reflect your wishes. Additionally, unexpected medical expenses, long-term care costs, and funeral arrangements can place a heavy financial strain on families. Proper estate and financial planning ensures that assets are managed according to your preferences and minimises financial burdens for loved ones.

Family conflict:

Too often I have witnessed disagreements over care responsibilities, financial matters, and inheritance because instructions are unclear. Planning reduces the risk of misunderstandings, promoting unity and preventing disputes among family members.

Unresolved grief:

When loved ones are left to navigate end-of-life decisions without clear guidance, uncertainty and doubt can deepen their grief. Questions like “Did I make the right choice?” or “Is this what they would have wanted?” can weigh heavily, leading to emotional distress long after their loss. Thoughtful planning provides clarity and reassurance, allowing families to focus on healing rather than unanswered questions.

When does one start end-of-life planning?

Start now! It is never too early, but it can often be too late! Planning means preparing in advance – not reacting in a time of crisis. 

Where does one start?

End-of-life planning can feel overwhelming but breaking it down into manageable steps makes it more approachable. Below are a few basic guidelines to help you get started.

  • Start by clarifying your priorities, ensuring that your medical care, financial security, and family harmony align with your values. 
  • Gather and prepare essential documents such as an advance healthcare directive, Will, and power of attorney to protect your wishes legally. 
  • Identify loved ones who can help you plan and those with whom you will share your information. 
  • Discuss your planning concerns and needs with your healthcare provider or care team – they can offer guidance and support as you navigate this important process. 
  • If you feel too ill or overwhelmed to handle the planning, delegate tasks to trusted individuals to manage different aspects of the process. Ensure they have your best interests at heart and always review and verify their decisions.
  • Use an existing checklist as a guide or create your own with your loved ones. 

Whatever approach you choose, commit to it and take action. Planning ahead allows you to spend more time cherishing the moments that matter most. Thoughtful preparation leaves behind more than just legal documents – it creates a lasting legacy of clarity and care, offering peace of mind for both the present and the future.

This is list can help you get started: download here.

Author: Rebecca Lazarus, social worker

Supporting Children and Teens Through a Parent’s Serious Illness

Supporting Children and Teens Through a Parent’s Serious Illness

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No one likes to think about their own mortality—especially when they’re raising children. But for many parents living with a serious illness, or simply wanting to plan ahead, the question quietly lingers: What if I die? How can I prepare my child or teen if that were to happen?

Although death is a natural part of life, talking about it often feels unnatural and painful. It’s even harder to face this conversation when it involves your children. Still, part of preparing for any outcome, especially when facing a serious illness, is making sure your children are emotionally equipped to understand, process, and cope if the unthinkable happens.

This journey begins with small, open conversations that help children make sense of life’s uncertainties. They need to be part of this journey; not just for understanding, but for healing, should the time ever come.

Start with Communication

One thing nearly all research agrees on is that honest communication is vital. Start by asking your child what they think is happening. Have they noticed changes? What are they wondering about?

This is a good starting point for deeper, more honest conversations. As your child begins sharing their understanding of the situation, gently and honestly introduce words like ‘serious illness’ and ‘dying.’ If death is a possible outcome, it’s important they hear and understand that word from you, so they can begin making sense of it in a safe and supported way.

Keep These Tips in Mind:

  • You can’t shield children from all pain. They are perceptive. Even if you try to protect them, they will sense that something is wrong. Help them feel informed, not confused or excluded.
  • Don’t wait for the “perfect moment.” Instead, create safe and honest spaces for ongoing conversations. Open communication now can reduce fear later.
  • Be the one to talk to them. Children and teenagers should hear serious news from you and not accidentally from someone else.
  • Listen carefully to their questions. Their understanding will depend on their age, personality, and life experience. Be present, and follow their emotional cues.
  • Use clear, simple language. Use language that matches the child’s developmental level. Avoid euphemisms like “in treatment” without explanation, and steer clear of false reassurances such as “Mommy is sick, but she’ll be okay.” These kinds of statements can create confusion, false hope, or unnecessary fear. Honest, age-appropriate communication builds trust and emotional security.
  • Offer emotional support, but don’t hesitate to ask for help. Supporting your child is hard when you’re emotionally vulnerable yourself. Accept support from others, whether that’s family, professionals, or community resources.
  • Let them help, but don’t burden them. Involve them in small, age-appropriate caregiving tasks if needed, but ensure they remain in the role of a child. If you are parenting alone, bring others in to help maintain structure and stability.

Creating Memories

Preparing children for a possible loss is not only about explaining what could happen, it’s also about leaving behind connection and comfort. If the worst were to happen, these preparations can become treasured sources of strength.

Help your child or teen build memories now. Even while you’re still here, this can help them feel closer and more secure.

  • Write letters your child or teen can read at key moments in life: graduation, birthdays, first heartbreaks, or just when they miss you. These can hold your love, encouragement, and even advice.
  • Create a memory box with simple, meaningful items: a scarf, a watch, a favourite recipe, or a small memento from your youth. These objects can become anchors for your child’s sense of connection.
  • Involve them in meaningful rituals, not necessarily funerals, but rituals of bonding. Let them help pick a photo for the wall, a song to share, or a story to write down. These create emotional tools they can carry forward.
  • Encourage journaling.  A private journal allows children and teens to process their feelings freely. Writing can be a safe place to release fears, hopes, and emotions. Over time, this may even lead to deeper conversations.

Facing the Unknown, Together

Preparing for the possibility of death is emotionally complex, for adults and children alike. But regardless of age, we all experience the same loss. And in a family, that loss is shared.

Losing a parent changes the entire family dynamic. It’s a lifelong shift, a kind of emotional disability the family learns to live with. That’s why preparing early, honestly, and together can help everyone navigate that shift if and when it comes.

This journey is about more than preparing for death. It’s about creating connection, clarity, and continuity. So no matter what the future holds, your child never doubts that they were loved, supported, and understood.

Written by: Ilana Kilian, social worker

Sources:

Malika Ndlovu

Book launch: Griefseed by Malika Ndolvu

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I recently had the privilege of attending the book launch of Malika Ndlovu’s new book, Griefseed. Many of you will remember the moving opening performance by this writer, poet, curator, and applied arts practitioner at the 2023 Palliative Care Conference in Cape Town. 

The launch, held at Exclusive Books in Cavendish, drew a sizeable crowd. From their dress and comments, it was clear they came from many walks of life, each with their own story. During the Q&A session, one audience member shared that she had originally come to buy a book and to use the quiet space to work on her MMed thesis (she is completing her MMed in Paediatrics, as I later discovered). Curiously and unexpectedly, she found herself drawn to the launch instead, explaining, “I am actually here to work on my MMed,” she repeated. But like many of us, she was deeply moved by the conversation that unfolded between Malika and author Barbara Boswell. Indeed, we are all carrying some form of grief in our hearts.

Barbara Boswell writes: “Griefseed is a gift, an offering from the pen of Malika Ndlovu that seeks to transform the ways we think about and process grief. Multidisciplinary in scope, the text includes poems, personal essays, images, and reflections on grief that punctuate the life story of the poet, offered here as medicine. These creative pieces function as both a window onto an individual woman’s life as she has journeyed with, through, and beyond grief, as well as a mirror, inviting the reader to see their own lives and losses reflected within Ndlovu’s.”

Thank you Malika, for your ongoing inspiration and invaluable contribution to the palliative care community in more ways than one.

Greefseed Mailka Ndlovu

The book is published by Karavan Press and is available at Exclusive Books.

Does your healthcare team know what matters most to you?

Does your healthcare team know what matters most to you?

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How to Talk to Your Healthcare Team About What Matters Most – Insights from Dr. Margie Venter

I was recently fortunate enough to pack my bags and travel with my family. That said, I have three boys—and in the midst of planning and packing, I sometimes wonder if the chaos is worth it! One gets hangry, so snacks are essential. Another always forgets something warm—he hates anything long and “claustrophobic”—and then ends up cold and borrowing a sweater. And, for everyone’s sake, devices must be fully charged for the long road. Especially since I like to take the smaller, winding routes—and I won’t be forgiven if we get lost.

Any journey involves planning: for what’s likely, and for the “what-ifs” (which is why I tend to overpack). I’ve often thought this is a far better metaphor for serious illness than the war analogy we usually hear. Wars imply winners and losers and often leave destruction behind. Journeys can be gentle strolls, even if long. Other times, they’re more like steep hikes—uphill, with only brief plateaus to catch your breath. Sometimes there’s hail; sometimes, sunshine. Sometimes you realise you should’ve turned left. Still, it helps to know where you’re headed and what to bring.

Likewise, when facing a serious illness, many people find it helpful to talk about what to expect and do some planning. It’s equally important for your medical team to understand what matters most to you, so any treatment decisions can be shaped around that. This isn’t the same for everyone, and as healthcare providers, we sometimes assume rather than ask. That’s where a ‘serious illness conversation’ comes in.

You may have heard of Advance Directives, Advance Care Planning, and Living Wills. This is similar, but more personal. It’s a conversation between you and your healthcare team that focuses on your values and goals in the context of your health. These views may change as your journey continues, so it’s a discussion worth revisiting. You may also want to include people close to you. Documenting the conversation can help guide decisions—whether made by you or, in some cases, by others on your behalf.

Here are some questions people have found helpful to explore:

  • What would you like to know about your illness and what lies ahead?
  • What information would help you make decisions about your care?
  • What does quality of life mean to you? What does a good day look like?
  • What matters most to you, and what would be important if you became sicker?
  • What are your biggest fears or concerns as you think about the future?
  • If you became sicker, how much would you be willing to go through for a chance at more time? Are there treatments you would rather avoid?
  • How do you want to involve the people you care about?
  • Is there someone you trust who could make decisions on your behalf if needed—a healthcare proxy?

Contrary to what many assume, talking about these things often brings relief, not anxiety. Research has shown that it gives people a greater sense of control and helps the medical team make not just clinically appropriate, but personally meaningful recommendations.

It’s never too soon to have this conversation—but too often, it happens too late. Your doctor may never raise the topic. It may be up to you to start it: “Doctor, I want to talk to you about my goals of care and living with my serious illness.”

You can find more guidance and resources here: https://theconversationproject.org/

 

Woman disgusted of some cough syrup she has to drink to feel better. Woman taking cough syrup on sofa at home. Ill woman with grey scarf taking cough syrup

Addressing the Gaps in Palliative Care: PALPRAC and EMGuidance Join Forces

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Rural healthcare South Africa
A Child's Radiant Smile in a Hospital Setting: A Glimpse of Hope and Healing
Expanding access to palliative care: doctors skilled to prescribe oral morphine

Palliative care remains one of the most underutilised medical services worldwide, particularly in low- and middle-income countries (LMICs). The Lancet Commission on Palliative Care and Pain Relief’s 2017 report and the WHO’s 2023 report, “Left behind in pain: Extent and causes of global variations in access to morphine for medical use and actions to improve safe access,” highlight the inadequate access to essential pain relief including oral morphine, in particular in low- and middle-income countries (LMICs). Despite being a WHO essential medicine and included in South Africa’s Essential Drugs List (EDL), morphine remains difficult to access due to procurement inefficiencies, governance issues, and misconceptions.

In South Africa, only doctors can prescribe morphine, while nurses are limited to dispensing it. Supply chain disruptions often leave hospitals and clinics without stock. Many patients and families have to travel long distances for their medication. Additionally, inadequate palliative care training leaves many healthcare providers uncertain about proper prescribing and management of side effects.

To address some of these challenges, PALPRAC has partnered with EMGuidance to develop short palliative care training modules. EMGuidance, a widely used South African digital medical information hub, serves over 34,300 doctors, 6,200 specialists, 1,170 pharmacists, and 16,500 nurses. These modules aim to enhance healthcare providers’ knowledge and competencies in the management of pain and other distressing symptoms.

The first module focuses on the basics of morphine prescribing, dispelling myths and offering practical guidance. By improving education and equipping healthcare providers with essential skills, PALPRAC and EMGuidance are working towards better pain management and enhanced quality of life for patients in need of palliative care.

Sign up for the course here: https://academy.emguidance.com/course/prescribing-oral-morphine-in-palliative-care

Share the link with colleagues!

UCT Summer School 2025

Palliative care at the UCT Summer School

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The UCT Summer School is an annual initiative by the University of Cape Town (UCT) that brings together members of the public for intellectually stimulating lectures across a variety of disciplines. This much-anticipated event aims to make academic knowledge accessible to everyone, offering a platform for learning and discussion.

One of this year’s highlights was a lecture titled “Palliative Care: A Fundamental Aspect of Universal Health Coverage,” presented by Professors Liz Gwyther and René Krause. The session shed light on the critical role of palliative care in healthcare systems, emphasising its significance in achieving universal health coverage.

In addition, PALPRAC (The Association of Palliative Care Practitioners of South Africa) and the Groote Schuur Palliative Care Service were invited to set up a stand in the venue foyer. This provided an excellent opportunity to connect with attendees, share resources, and raise awareness about palliative care. The stand facilitated meaningful interactions with the community and allowed healthcare professionals to network and exchange ideas.

A special thanks to Dr Melodie Wessels for her advocacy and dedication to palliative care, ensuring its inclusion in platforms like the UCT Summer School.

We can affect the journey

Palliative Care Awareness Day in Polokwane: A Heartwarming Success

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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:

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.

 

Exploring Palliative Medicine: A Conversation with Dr. Rene Krause

Exploring Palliative Medicine: A Conversation with Dr. Rene Krause

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At the University of Cape Town (UCT), the Post Graduate Diploma in Palliative Medicine stands as a beacon of education, aiming to equip healthcare professionals with the knowledge and skills necessary to provide modern palliative care. We had the privilege of speaking with Associate Professor Rene Krause, Head of Division: Interdisciplinary Palliative Care and Medicine (IPCM) in the Department of Family, Community and Emergency Care (FaCE), to delve deeper into the purpose and impact of this diploma.

Addressing the Need for Palliative Care Services

Dr Krause emphasizes the diploma’s crucial role in addressing the scarcity of palliative care services in South Africa, particularly in underserved communities. “The programme is an enabler, teaching clinicians and healthcare professionals essential palliative care skills and nurturing leadership within the palliative care discipline, especially where resources are limited,” says Dr Krause.

Additionally, the diploma fosters communities of practice, providing vital support and resources, particularly for providers in rural areas.

Beneficiaries of the Programme

Beyond doctors and nurses, Dr Krause highlights the significant impact the diploma could have on a range of healthcare professionals, including social workers and health and rehabilitation workers. There is a substantial gap in the provision of palliative care within these disciplines. A robust psycho-social course is needed to address this gap effectively.

Proud Achievements of the Programme

Reflecting on the diploma’s impact, Dr Krause expresses her pride in the ethical decision-making and communication skills displayed by those who have completed the course. 

Additionally, the programme equips individuals to identify palliative care needs and effectively manage pain, enhancing patient care quality.

Building Upon Foundations: The MPhil Programme

Dr Krause also shares on the MPhil programme, which builds upon the foundation laid by the Postgraduate Diploma. Through this advanced programme, students will develop advanced palliative care skills, further leadership capabilities, research proficiency, and a more profound ability to engage with communities, not just patients, through advocacy. 

The Postgraduate Diploma in Palliative Medicine at UCT is a cornerstone in broadening access to palliative care across South Africa and neighbouring countries by empowering healthcare professionals to provide compassionate and effective care to those in need.

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).

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