The Role of Patient Advocacy in Palliative Care

Our Youth Ambassador, Huyaam Samuels, writes about her condition and her role as a patient advocate:
Palliative Care plays an important role in a patient’s life, like mine, as I battle with a rare medical and life-limiting condition called Pseudo-achondroplasia and Hypermobility Syndrome. According to WHO: “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening/limiting illnesses (whole range of medical conditions), 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.” (World Health Organisation: Definition of Palliative Care)

Today I can positively, courageously take the stand and speak up by advocating for palliative care. Patient advocates are vital in the palliative care community, we are half of the healthcare system. Most of the time you have a multi-disciplinary team discussing your case. Your options are limited: “How do you feel about this?” or “What do you think about this?”; finally reaching the worst fear of any patient or parent/guardian 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.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- be the best you can be, live your life to the fullest and how you see fit. This is where the importance of patient advocates come in.

In my perspective approximately, eighty percent of the advocacy and delegation are done by your team. As a patient how do we get our voice or opinions heard to the general population within the palliative care community? We blog via social media hoping that there is someone out there who perhaps has the same condition or train-thought as you. Looking back, I realise that I live in the present because I thought my future was 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 future.I wish that someone could have told me this back then: No matter how unclear your future seems right now, it will get easier. Acceptance 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 they may be medical professionals or patients but they need to hear that you’re advocating for their lives too, not only yours. Most importantly, you are spreading hope. You allow all medical professionals scope to adjust how they work individually or as a team. The healthcare system fails to recognize the importance of involving direct stakeholders in palliative care communication and advocacy! There are more “what if’s” in our palliative care health system than “what could be”. It is natural for us to worry about our health. 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.Patient advocates are critical in palliative care that it should be treated and respected equally as the opinion of doctors. 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 who are able to bring across a different message or opinion which is extremely powerful. It is imperative, it may be few but it is a start to a better and much more well-rounded palliative care community and service which can be provided.

I would like to use a quote by Janusz Korczak: “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.This article was first printed in the international version of eHospice.
With thanks to eHospice and WHPCA