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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

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).

Understanding Cancer — Sonia Booth

Palliative care and cancer

 

Listen to this conversation between palliative care doctors and Discovery team members that explore palliative care in depth, explaining that it improves the quality of life for patients and families through managing symptoms comprehensively – including physical, psychosocial, and spiritual aspects.

It emphasises that palliative care should be integrated early alongside curative treatments, with the intensity increasing over time as needed, including ultimately bereavement support for families.

Conversations with patients around goals, values, and likely disease progression is key.

Research shows palliative care improves quality of life, reduces depression/anxiety, and may even prolong life.

Locally, more clinician training and public awareness are needed in South Africa.

Overall, palliative care is a continuous journey focused on the patient as a whole person within their family and community.

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