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The Role of a Professional Carer in the Palliative Care Setting

The Role of a Professional Carer in the Palliative Care Setting

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.

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.

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 Therapy in feeding and communication for Palliative Care patients

Nourishing Words: The role of Speech Therapy in feeding and communication for Palliative Care patients

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What can a Speech Therapist offer in palliative care?

In the palliative care team, speech therapists often assist with communication, even in the early stages of a diagnosis. Patients are able to communicate their wants and needs, enabling them to participate in their care and express their values to their families and healthcare team. If verbal communication deteriorates due to the disease process, we can work with individuals to maintain communication and social interactions for as long as possible.

Another aspect of our role is addressing swallowing difficulties in patients. Eating and drinking hold significance for most people; I haven’t met someone who didn’t consider it an essential aspect of their life. In palliative care, we prioritize the patient’s values and expectations to ensure eating remains as safe and enjoyable.

We also support families in modifying diets to ensure clients can continue to enjoy certain foods. Food provides comfort for many of us, and we aim to maintain that comfort for palliative care patients. 

Are there barriers faced by Speech Therapists in Palliative Care?

Many people mistakenly believe that speech therapists primarily work with children; we do much more.

One of the biggest challenges as a Speech Therapist is being consulted late in the disease process, usually when swallowing and communication difficulties are severe. This late stage makes it challenging as deterioration may have progressed beyond enjoyment and is purely about support. As an example, if a patient can no longer communicate clearly due to illness, it becomes difficult to establish their wishes regarding eating, drinking, and communication. In neurodegenerative diseases (such as Dementia or Motor Neurone Disease), establishing alternative forms of communication when the patient is already vulnerable can be incredibly difficult.

Another misconception is that speech therapy focuses only on improving speech. Again, in conditions like Motor Neuron Disease, where speech progressively worsens, we primarily focus on providing support rather than “fixing” speech.

Additionally, there’s a common belief that feeding a sick person will improve their condition or prolong their life. Artificial nutrition and hydration (ANH) are not indicated at the end of life. This discussion with families can be complex but ties back to establishing the patient’s wishes early on.

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

I had a patient with Motor Neuron Disease whom I saw early after diagnosis. During our conversation, I discussed the likelihood of her eventually becoming unable to eat and drink by mouth, as well as the risks and benefits of tube feeding. Right from the start, she was adamant that she did not want a feeding tube under any circumstances. My role then shifted to helping the family navigate their thoughts and emotions surrounding her decision.

In the end, she passed away without ever having a feeding tube. Towards the end of her life, all she wanted was mashed potatoes and coffee—no judgment, as it was her favorite comfort. As long as she could have those, we were valuing and respecting her wishes.

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

I typically encourage patients and families to reach out early if someone has received a serious illness diagnosis. This doesn’t necessarily mean committing to weekly therapy sessions but instead initiating a discussion about what to expect, potential outcomes, and options for management and support. 

If the concern is swallowing difficulties, I recommend that families watch for signs indicating struggles. For instance- someone experiencing difficulty swallowing might appear to be choking, cough excessively after meals, or take an unusually long time to chew. In such cases, consulting a Speech Therapist can help reduce the risk of unnecessary hospital admissions due to potential pneumonia.

Finally, I stress the importance of maintaining oral hygiene. While it may sound trivial, oral hygiene is critical in swallowing safety. If you have difficulty swallowing and something enters your lungs while your mouth harbors bacteria, aspiration increases the likelihood of developing pneumonia. Therefore, I advise brushing your teeth at least thrice daily if you experience swallowing problems.

 

 

By: Teresa Teixeira

Cape Town based Speech Therapist

African mother and adult daughter taking a selfie while wearing traditional dress with ocean view in the background - Family love and technology concept

My Grief Counselling Story

Last year was one of the worst times in my whole life I had never in my 23 years of life experienced something this painful and traumatic from the visits to hospitals, doctors and clinics for tests and nobody could find a solution to my dear mom’s pain to being told she’s got stage 4 lung cancer and she’s got a matter of weeks maybe even days to live. 

My mother was fading day by day, the disease took over the body of the person I loved more than anything and the pain of watching her suffer and wither away tore me apart.

I was sure there was nothing that would get me through this! The fact of losing the one person who I never thought I’d ever lose, the one I feared losing most in this world. January 2023 came along and it happened! I got the call to say she had passed away and my world stood still. 

I started bereavement counselling to help me get through the experience and honestly I never believed it would help, but to my surprise having someone to talk to about the worst experience in my life helped more than anything. 

On the days I felt alone, like I was losing control, having someone there to listen and to give me the most comforting advice and reassuring me that it was all part of this long journey was certainly helpful. The counsellor never lied, she never promised things that she couldn’t make sure to provide. Counseling helped me understand the 5 stages of grief and how to get through each one; it also helped me open up.

Having bereavement counseling made me realize it was okay to talk about the pain , that reliving it for a moment helped in the end , that it was okay to be doing counseling that there was nothing wrong. 

It didn’t mean I was weaker for having someone help me deal and come to terms with things but it meant I was a strong resilient person for opening up and talking about the worst experience I’d encountered with a professional understanding person who was my guide in this tough journey. 

I now recommend people going through a loss to go and get bereavement counselling because it helps. It can’t take the pain away but it for sure makes it more bearable

Palliative Care from an Occupational Therapists perspective

Palliative Care from an Occupational Therapists perspective

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We typically think of OTs in rehab. Where do they fit in in palliative care?

Occupational therapists want to optimize a person’s quality of life through meaningful occupations. This means that we will adapt and modify activities and ensure that you can live and function regardless of your diagnosis and current health status; we want to ensure that you can live as independently as possible – which flows so well with the principles of palliative care – to live as actively as possible until death. 

When we refer to occupation, we are not only talking about work but also all activities of daily living that are important to you and that bring you meaning and purpose. We will find unique ways to ensure you can still do the things you love. 

What motivates you to support patients and families in this way?

Everyone has an idea of what is important to them, but being able to help people and make it possible for that patient is essential to me. 

Hearing clients’ stories about their lives and what is important to them makes the job enjoyable for me. I enjoy listening to their life experiences and their legacy. We all have a story to tell, and I want to help someone share their story so that they feel like they have achieved something. 

I like to ask my clients simple questions like, “How long have you been married?” these questions help them relive those moments again, bringing them so much joy. I often see clients for months, and for up to an hour, we build strong relationships. They trust me, and I get to know them and their families.

Having an OT in your team allows for an additional layer of support. We do much more than just rehabilitation. We also support your emotional health. 

What else are you able to offer patients apart from the physical rehab?

I not only assist with the physical adaptation of the client, but I also work a lot on legacy activities and building memories with and for families. I sit with them and discuss their fears, worries, and the future. 

I focus on building trusting relationships with the people I work with. If you ever have questions or feel too scared to ask the doctor, I’m here to help bridge that communication gap. It is important that my clients are able to voice their concerns and communicate their needs and wants. I can then relay that information to the rest of the team.

Can you tell us about one of your patients and how you were able to add value to their journey?

I’m reminded of a 44-year-old woman with stage 4 colon cancer I worked with last year. She had been hospitalized for about four or five months, and she had refectory (persistent) nausea and vomiting. 

She had young children, and building a legacy was very important to her. We worked very hard to keep her as independent as possible, to do self-care and mobility at home. We did exercises and adaptations in her house so she could move around comfortably. She made particular and unique gifts for her children and husband. She also dictated a life story that her friend wrote a book/novel for her girls as they were still relatively young. They also wanted to do a lot of outings and activities as a family to maintain normalcy. I managed many practicalities for outings, such as the Christmas market. 

We focused on energy conservation, getting a wheelchair so she wouldn’t need to walk at the market, sitting and enjoying the afternoon, and ensuring she had all her medications and breakthrough doses in her handbag. 

She also managed to go away with her family for a weekend, which was a significant achievement. I ensured she knew how to use the car seat for maximum comfort during the ride. Despite facing mobility challenges, she continued to find joy in her life, fulfilling her wish to be at home and enjoy Christmas with her family. 

 

 

By: Madelein Kritzinger

Palliative Care Occupational Therapist

PC matters to you

Does your healthcare team know what matters most to you?

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Dr. Margie Venter PALPRAC Clinical Director enlightens us on how to inform your healthcare team on what matters most to you when facing a serious illness.

Going on any journey means planning ahead. Also a cancer journey. Planning for what’s likely, but also for the what-ifs. I’ve often thought this to be a much more useful cancer metaphor, as opposed to the war one. Wars imply winners and losers, and often destruction in its wake. 

Journeys can be gentle strolls, even if sometimes long. Other times journeys are much more difficult hikes, up hills with only the short relief of a plateau from time to time. It can feel as though you never quite reach the top to appreciate the view. Sometimes there are unexpected hailstorms or a break in the clouds allowing the warmth of sunshine. Sometimes it would have been better to turn left. Either way, it helps to plan a little, knowing where you’re supposed to be going and what you should pack.

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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