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Patients, families and other direct stakeholders must be involved in palliative care advocacy

Author: Huyaam Samuels, PatchSA Youth Ambassador
24 November 2017

Palliative Care plays an important role in the life of someone like myself, as I battle with a rare medical and life-limiting condition called Pseduo-Achondroplasia and Hypermobility Syndrome.

According to the World Health Organization, palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening/limiting illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Today I can positively and courageously take the stand and speak up by advocating for palliative care. Patient advocates are vital in the palliative care community; after all, we are half of the healthcare system. 

Most of the time you have doctors most of whom are specialists, or a multi-disciplinary team discussing how your palliative treatment should go. These are your options: “How do you feel about this?” or “What do you think about this?”; finally reaching the worst fear of any patient, family members, guardian or carer where there is nothing curative that can be done and all you have to do is hold your head high. Don’t be fooled, you’re allowed to have down time.

At that stage, nothing is running through your head. You might just be looking at your team and your options but not saying anything, because ultimately there is nothing that comes to mind.

Often, we think: let’s go with what the team suggests because they’re the experts, maybe they consulted with doctors from different countries and this should be your treatment plan.

Sometimes we have to let go and accept it – just be, be the best you can be and live your life to the fullest and how you see fit. Not the team, not the doctors. but you. This where the importance of palliative care advocacy from the patient themselves comes in.

In my perspective, approximately eighty percent of the advocacy and delegation are done by your team and specialist doctors. As a patient how do we get our voice or opinions heard to the general population, or within the palliative care community?

We blog, we write articles, we post on Facebook, Instagram and Twitter, hoping that there is someone out there who perhaps have the same condition or train of thought as you.

Looking back, I realise that I live in the present because I thought my future is impossible to address, and yet I sit here today planning for my future.

I know I want to attend university; I want to learn and have my qualifications. I control my own future.

I write this article because I wish that someone could have told me this back then: No matter how unclear or impossible your future seems right now, it will get easier.

Acceptance, along with appropriate treatment and care gives you clarity. The fog will lift, your future lies ahead; no matter how bleak it seems now.

This is why patient advocacy and the role of direct stakeholders are important in palliative care.

There are others out there, whether these be medical professionals or patients, and they need to hear you, to hear that you’re advocating for their lives, not only your own.

It helps if these messages come from someone who is receiving palliative care as well. Most importantly, you are spreading hope.

Medical professionals who advocate for palliative care should be at equilibrium with patients or carer advocates, as their story might carry someone an extra mile.

The healthcare system fails to recognise the importance of involving direct stakeholders in palliative care communication and advocacy!

As patients, even myself I do admit, we always think of that possibility of not being able to do things – such as go to university – like everyone else.

There are more “what if’s” in our palliative care health system than “what could be's.” It is natural for us as patients to worry about our health.

For example, my main concerns are: “What if my body cannot be able to withstand sitting for such long periods of time?” or “What if I have extremely bad pain or don’t feel well?”

Give it time. You will learn to push those negative thoughts to that part of your brain where you can just hear them, enough to not to do something to harm your body.

The role of direct stakeholders – patients or carers (this ranges up to many people) – is critical in palliative care, and this role should be valued and respected as equally as that of healthcare professionals.

Let’s face the facts: what will doctors do without us (patients) or vice versa? Therefore, the equilibrium needs to shift and there should be space for patient advocates to stand up for their healthcare plan.

It is imperative that there are patient advocates, we may be few, but it is a start to a better and much better-rounded palliative care community and service which can be provided.

Patient advocates are vital to the palliative care community, as they are able to bring across a different message or opinion which is extremely powerful.

I would like to end with a quote by Janusz Korczak, doctor, children's writer and social activist: “Children are not the people of tomorrow, but are people of today. They have a right to be taken seriously, and to be treated with tenderness and respect. They should be allowed to grow into whoever they were meant to be. 'The unknown person' inside of them is our hope for the future.”

This is true not only of children and young people, but also of people living with life-limiting illness. We have the right to be taken seriously and to be treated with tenderness and respect. We still have a future and we should be allowed to grow into who we are meant to be.

We are part of the hope for the future. 

Huyaam Samuels is Youth Ambassador for Palliative Treatment for Children South Africa (PatchSA). Find out more about PatchSA on their website

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