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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

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

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

Bridget McNulty

Writing about grief as therapy

Today is National Grief Awareness Day. The death of someone close to us is an event we are all likely to experience. And the grief that comes along with it. For many of us, we don’t know what to do or how to deal with grief – whether it’s our own or the grief of someone we know.

National Grief Awareness Day is an opportunity to talk about grief, and loss, in an open-hearted way, knowing that others are going through the same thing. A chance to support those who have lost someone they love, and are now trying to pick up the pieces of daily life.

Bridget McNulty’s story. 

When my mom died very suddenly – 13 days from diagnosis till death – I looked for a book that would help me. I’m a writer and a reader, and books have helped me with every stage of my life… Like medicine, they can ease pain and shed a little light, and make things slightly easier to bear.

Except, I couldn’t find that book. I could find religious books about death, philosophical books about grief, and texts about grief counselling, but nothing warm, empathetic, and kind. I wanted something easy to read because my mind was foggy. I wanted something kind because life felt so hard. I wanted something that gave me space to express myself – rather than told me how I should be feeling. But I couldn’t find it – so I wrote it.

The Grief Handbook: A guide through the worst days of your life is the book I wished I’d had when my mom died. It’s a collection of all the things I found most helpful when I was grieving – from poems to podcasts to excerpts from books and articles – along with reflections on my grief journey, expert input on things like PTSD and complicated grief, and exercises that might help move through certain emotions. Things like colouring in and journaling, venting, and externalizing grief.

This year, together with two very wise women (artist Clare Louise Thomas of The LOVE Kitchen, and Alignd and Swansong co-founder Shivani Ranchod), I’ve created The Grief Course – an online companion through the grief journey. It’s an online course with zero expectations, self-directed and purely there to provide support and guidance as you move through grief.

 

My hope, with both The Grief Handbook and The Grief Course, is that others who are grieving can feel less alone. We are all in this together – this messy journey of loving, and losing those we love. Let’s be as kind as we can on the journey.

Bridget McNulty is the author of The Grief Handbook: A guide through the worst days of your life.

Find out more at www.griefhandbook.com  | Find out more about The Grief Course at www.griefcourse.com