For people living with chronic health conditions, the healthcare system can often feel overwhelming, stressful, and confusing. That’s why patient advocacy is so important.
We chatted with our wonderful Sidekicker, Audur, who is a registered nurse with experience in oncology nursing and end-of-life care.
Audur is passionate about patient advocacy and making sure that everyone has access to the treatment they deserve.
Keep on reading to gain a nurse’s insight into why patient advocacy is such a vital part of healthcare, as well as tips on how you can be the very best advocate for both you and your loved ones.
Thank you for joining us, Audur. Can you tell us about your experience working as a nurse?
I graduated from the University of Iceland as a registered nurse in 2016. By then, I’d already been working as a nurse assistant in acute internal medicine at the University Hospital of Iceland.
After my graduation, I started working in the Oncology inpatient ward at the same hospital and became passionate about oncology nursing, family nursing, hospice, and end-of-life care.
In my view, Oncology nursing is fascinating because cancer can affect the whole body, which means that you need to look at the patient holistically rather than narrowing the focus on one specific organ or organ system.
Cancer therapy is also extremely difficult for both the patient and their loved ones. People become very sick during therapy, and families need a lot of support to be able to care for and support their loved one. In oncology, it is not only the patient who requires care but their whole family and support system.
This is also the case with hospice and end-of-life care. There’s something about being there for the patient and their family during the final days. It’s a delicate time and somewhat sacred, and I feel very humbled to be trusted to guide families through that journey. And the gratitude that you can feel from the family when you have done your job well is a feeling like no other.
Even though oncology and end-of-life nursing is often filled with sorrow and unfairness, this feeling of gratitude has always given me a sense of purpose and fulfillment.
For someone who has never heard the term ‘patient advocacy’, how would you explain it?
In its most simple terms, patient advocacy is about giving a voice to patients and their caregivers and making sure that they are safe, represented, and supported through their whole healthcare journey.
It’s about making sure that they get the best care and treatment possible with their best interests at heart and that the patient’s voice is always heard.
Why is patient advocacy so important in healthcare?
Patient advocacy is a very important part of working in healthcare, and, as the name suggests, it’s the role of advocating for patients when they either can’t or don’t know how to advocate for themselves.
This role is important to ensure patients’ rights are protected, but it’s also important for less obvious reasons.
Patients need to know that someone who knows the system is in their corner and what their choices are when it comes to their healthcare.
Healthcare-related information can be very complex, and making decisions that can affect your health and wellbeing is difficult when you either don’t know or understand what’s happening with your health or how the choices and different treatments might affect you.
Having someone who understands your condition, is familiar with your medical history and situation, and knows the healthcare system inside out can make all the difference. Not only for your physical but also mental health. Because being a “patient” is hard work and can be very stressful.
What is the nurse's role in patient advocacy?
Patient advocacy, in my view, is about being the person who coordinates the information and the roles of the different healthcare professionals.
The patients should always be at the center of things, but there are so many people who touch the patient journey: doctors, different specialties, nutritionists, physiotherapists, and psychologists. The list goes on. But, the patients should always be in the center, and I believe it is a nurse’s role to make sure that the patient stays in the center and be the person there standing next to them.
I like to think of it as “being their buddy in the system” – knowing their needs and speaking up for them when they cannot do it themselves. Either because they are not physically able to or because they are not able to understand the information that they are being given about their condition and care. I think that nurses are in an excellent position to be that coordinator and advocate for their patients.
It’s also about being on the patient’s team and making sure that they and their family understand what is going on, are able to absorb all the information that they are given, and understand it.
It’s also about making sure that their needs are met and that, if they’re not met, that you are their advocate or voice in the system that makes sure that they are heard, seen, and provided with the best possible care.
I think that a very important part of patient advocacy is to make sure that information is presented in a way that the patient can understand it. So they are also able to advocate for themselves.
I don’t know how many times patients and family members have looked at me with big question marks in their eyes after the morning rounds. It’s so important to make time to sit down with them and explain everything again and ask questions back to make sure that they understand.
Can you share any examples of patient advocacy you experienced during your time as a nurse?
I once had a patient who was struggling with substance abuse and had been using opiates for a long time.
The patient came to the hospital very sick and in a lot of pain. The patient was only put on some mild over-the-counter pain medication. Because this person had a substance abuse disorder, the doctor was very hesitant to prescribe anything stronger. However, the truth is that people who have been using strong pain medications for a long time need to have even stronger or more pain medication than a person who has never taken strong painkillers.
In this situation, the patient did not have a voice, and his needs were being ignored due to stigmatization within the health care system. By advocating for that patient, I was able to get him the medication that he needed.
I think that being a patient advocate is especially important for vulnerable patient populations, like people struggling with substance abuse. They are so often overlooked by most healthcare systems and are even more in need of a strong advocate who sees them holistically as a person whose addiction is a response to a trauma or even multiple traumas.
For someone who wants to start practicing patient advocacy, what advice would you give?
Listen to the patient and their needs, try to put yourself in their shoes.
I think it’s very easy as a healthcare professional to become immune to what the patient and their family are experiencing because the more experience you have as a healthcare professional, the more you forget how novel and strange this situation is to a normal person. It is a unique experience in their lives, often something that they have never experienced before.
For example, if you have a patient being admitted with pneumonia, for you as a healthcare professional, this is just another patient that has pneumonia; you might even have more than one patient at a time with the same diagnosis.
However, for this individual patient, this is a unique experience. They may never have had pneumonia before, never been prescribed antibiotics, or maybe even never been admitted to a hospital before. Being mindful of that and supporting the patient throughout this unique journey in their lives is a great first step toward being a patient advocate.
How can caregivers practice patient advocacy and provide support to their loved one?
Being involved in your loved one’s journey through the healthcare system is important, both for the caregiver and the patient.
I think the number one piece of advice I would give someone is to ask questions. And ask again if you don’t understand the answer that you get. I think people are often afraid to ask questions or admit that they don’t understand the information that they are being given, thinking that they’re stupid for not understanding. But that’s not true at all. Healthcare-related information can be so complex, and healthcare professionals often become immune to the complexity of it.
Another good piece of advice for caregivers providing support to a loved one living with a chronic illness or going through an acute illness episode is to write things down and keep all information regarding their healthcare in a single place, in a notebook, for example. You could also use that same notebook to prepare for doctors’ appointments – writing down the questions that you have and what it is that you want to discuss with the doctor. It will help you remember what has happened so you can keep track of things.
But, with that being said, it can be hard to be both a caregiver and an advocate for your loved one. This is why I think the role of nurses as patient advocates is so important, especially when a patient is admitted to the hospital during some acute episode in their illness, for example.
Working as a nurse in oncology, I have often felt a sense of relief from caregivers when their loved one has been admitted, and they can take off the advocate hat and just be there for them as their loved one and pass the role of caregiver onto someone else.
If you’d like to learn more about patient advocacy, check out this article right here. And feel free to explore all our other stories on Living Well.