What is a Patient Advocate, Actually? (And what do they do?)
Independent Patient Advocacy is a new, emergent and much-needed healthcare career here in Alberta, Canada - and around the world. But what exactly is a patient advocate?
Patient Advocate definition
Also known as “healthcare navigator” and “health advocate”, PatientPathways.ca offers this definition of a Patient Advocate: “As Patient Advocates, we walk by the sides of the patient and their loved ones as a guide and case manager through the maze of the healthcare system. We are voices for the voiceless, and work hard to ensure no patient in our care slips through the cracks.”
To expand, the overwhelming need for patient advocates in Canada stems from a complex and critically overburdened healthcare system. This system can be challenging for anyone to navigate - even more so for those also exhausted by pain or illness, facing sudden medical crises or nearing end-of-life.
As an independent healthcare navigator and patient advocate, my primary goal is to provide patient-centred care. For those who are able, I offer this by way of education and empowerment, sharing important information with clients on how to communicate effectively with busy doctors, set themselves up for hospital discharge and aftercare, and plan ahead so their needs and wishes are known in any emergency.
For those not capable of self-advocacy, a Patient Advocate can provide an indescribable sense of relief by directly helping address a medical crisis or need with time-saving expertise and compassion.
A Patient Advocate is a skilled friend who walks beside a patient, showing the way, lending a hand.
What kinds of things can a Patient Advocate do?
When an independent healthcare advocate is hired, their time, skills, knowledge and resources are at their client’s disposal. A patient advocate is a capable ally who walks by their side, helping them express their wishes and needs, organize appointments, medication and care, and ensure they are treated with respect throughout the healthcare journey.
No one falls through the cracks on a Patient Advocate’s watch, if we can at all help it.
Here are ten specific ways a Patient Advocate can help.
1. A skilled Patient Advocate has comprehensive knowledge of the inner workings of their local medical system.
At PatientAdvocates.ca, our understanding of how to efficiently navigate Alberta healthcare allows us to guide a patient swiftly through each step of the journey, and our connections can help them gain access to the resources they need sooner.
2. Patient Advocates are trained to understand “medical jargon,” enabling us to translate diagnosis, treatment options and follow up care into understandable terms for patients and families, reducing stress and confusion.
It’s no secret that healthcare providers are tragically overbooked, and appointments can feel rushed, often leaving patients with more questions than answers. However, with a Patient Advocate by their side providing an extra set of skilled eyes and ears, we can help interpret complex medical information, request additional documentation, and clarify follow-up instructions to the patient, and their families.
Additionally, a Patient Advocate provides an invaluable accountability layer in the doctor's office, which can result in more respectful treatment of the patient, and faster, better outcomes overall.
3. Patient Advocates are expert problem solvers, with many valuable connections and resources at their fingertips.
Patient Advocates are objective, organized, methodical, and above all, natural problem solvers. This specific skill set equips us to quickly find solutions, and help put out fires that can arise during medical crises. Our attention to detail, and ability to prioritize what’s most important to the patient and their healthcare providers allow us to move quickly to help simplify complex situations.
However, we do not do this alone. Patient advocates are part of a professional team, with access to a tremendous database of contacts and resources, enabling us to support clients better than they could manage on their own.
4. Patient advocates know how to communicate effectively and professionally with healthcare providers, often making their jobs easier.
Being clear and concise, assertive yet not aggressive, while also being able to remember and communicate all relevant health details: this is a near-impossible feat when we are ill, in pain or feeling intimidated or rushed.
Patient advocates know how critical clear medical communication is, and are often greatly valued for helping busy staff with patient communication and understanding. Patient Advocates help their clients remember important details, can explain and soothe anxieties about change and treatment, and respectfully speak up for the patient so that healthcare providers take them seriously, and take action.
5. A Patient Advocate can help with Advance Care Planning
In Alberta, the legal document that appoints an agent who knows your medical wishes, and can speak for you if you no longer can, is called a Personal Directive, and is an important part of Advance Care Planning.
Unfortunately, Advance Care Planning is usually seen as a minor aspect of will and estate planning. One downside of a standard Personal Directive drawn up in a lawyer's office, or downloaded from a government website, is that it is vaguely nonspecific about end-of-life wishes, only specifying who can decline "heroics" on a patient’s behalf in the event of intolerable suffering. Unfortunately, “intolerable suffering” is also not defined, and “declining heroics” is a very broad term encompassing not just a DNR (Do Not Resuscitate) order, but also declining many other medical interventions such as intubation, the use of a ventilator or mask to provide supplemental oxygen, and tube/intravenous nutrition to prevent death by starvation.
These details and more should be considered and decided upon in advance by the client, and officially documented. A skilled Patient Advocate will be able to assist with this.
For example, in Alberta, PatientAdvocates.ca utilizes a customized, proprietary process resulting in an all-encompassing, legally binding Personal Directive. This process begins with a compassionate, in depth conversation about the client’s values, beliefs and wishes for end-of-life, then turns these wishes into official documents that outline who should speak for them, which exact medical interventions and forms of resuscitation they would want, and preferences for organ and body donation. Our Advance Care Planning process also includes helping facilitate courageous conversations with family members, supporting the client as they describe their wishes to their loved ones, and ultimately empowering their entire care team to be able to act quickly and confidently for them in the case of emergency, with the patient’s wishes clearly known.
6. Patient Advocates are transparent, and believe in autonomy.
An independent Patient Advocate is often hired by a patient’s family or primary care partner. In the case of those struggling alone, hiring a patient advocate can be especially essential. Too often, when illness, injury or cognitive decline occur, those who are alone suffer unnoticed until a severe emergency brings them to the attention of healthcare services. Even then, due to our overburdened medical system, advocacy in some form is usually necessary for a patient to receive sufficient care, especially when they are unable to speak for themselves.
If one is going it alone, establishing a service agreement and Advance Care Plan with a patient advocate in advance of medical crisis is a highly recommended strategy. In this way, they can be at the ready for their client.
Ultimately, whether we’re hired by family or an individual, a patient advocate works strictly for the well-being of the patient. This is their life, after all, and the patient ultimately decides what is important, if they are able to do so. A skilled Patient Advocate is simply there to help their client get wherever they want to go in their own healthcare journey.
It’s also important to acknowledge that values, beliefs and wishes for end-of-life vary from one person to the next, and respecting those differences is a big part of a patient advocate’s job. Transparency regarding goals, how we will attain them, time spent, and costs incurred are also essential parts of a Patient Advocate’s process.
7. Patient advocates possess in-depth knowledge of the rights of patients, and work to protect them from mistreatment and abuse.
How do you know if your rights as a patient in Alberta have been infringed upon if you do not know your rights? Many folks experiencing illness, disability, or end-of-life suffer power imbalances without being aware, leaving them vulnerable to abuse, neglect, and lack of respect and autonomy.
A large part of a patient advocate’s job is to watch for, recognize and prevent, if at all possible, cases of mistreatment and abuse for clients in their care.
At Patient Advocates, we are deeply familiar with the Health Care Act of Alberta and Canada, the Human Rights Act, and Employment Standards. We also understand professional principles known as “Standards of Care,” “Scope of Practice,” and “Ethics of Healthcare Providers,” as set out by the provincial governing bodies of medical professionals and facilities. This understanding allows a Patient Advocate to determine how best to effectively report cases of patient neglect, abuse or mistreatment to all appropriate regulatory boards.
8. Skilled Patient Advocates know how to navigate the official complaint process for all local healthcare providers, and Workers Compensation.
If a client feels they have experienced negligence, poor conduct, discrimination, unethical treatment or inadequate healthcare, a skilled advocate can compassionately identify whether it is indeed a valid complaint, as outlined by their local Health Act.
If it is, the advocate will direct their client to the appropriate regulatory bodies and, if requested, help them navigate the process of registering their complaint with efficacy. Utilizing an experienced health navigator for this process increases the likelihood of a complaint being heard, acted upon and a resolution being reached. If a complaint is not resolved satisfactorily, legal advice can be recommended.
NOTE: If you or someone you know has experienced medical abuse or mistreatment, please review our step-by-step guide on how to make an effective medical complaint.
9. A Patient Advocate frees loved ones to be present, offer emotional support to the patient and each other, and to grieve in peace.
A patient advocate provides relief by taking on the medical to-do list for distant, busy or burnt-out care partners. Rather than being swept away by the overwhelm of crisis, a patient advocate stays organized and focused. They can work for the family to track down and speak with medical staff on their behalf, support the patient’s daily care and pain management, and provide detailed updates on their condition, treatment options, and follow-up care to care partners near or far.
A patient advocate frees loved ones to simply be with the patient, support each other with peaceful presence and togetherness, and to breathe and grieve through loss without additional stress or distraction.
10. Ultimately, a Patient Advocate’s primary focus is on compassionate, patient-centred care.
One of the greatest benefits of hiring a medical advocate is their unmatched devotion and attention to their client’s well-being. A skilled patient advocate has the time and ability to ensure they are seen, heard and understood.
If requested, a Patient Advocate can be authorized to assemble and oversee a patient’s entire healthcare team, acting as their case manager in collaboration with the patient and their care partners. In this way, a Patient Advocate is able to do their best work, creating cohesiveness between all moving parts and many to-do lists, facilitating clear communication, and putting into place all required equipment, care staff and coping mechanisms. Case management ensures no detail is missed, and facilitates the best quality of life possible for a client.
All this and more can be arranged through a Patient Advocate, who simultaneously works to emphasize empowerment. Their client should always feel in control of their own healthcare journey.
How do I find a Patient Advocate near me?
PatientAdvocates.ca is based in St. Albert, offering in-person services to the Edmonton area, and virtual services to all of Alberta, Canada.
PatientPathways.ca, our sister operation in Vancouver, offers in-person services to the Vancouver area, and virtual services to all of British Columbia, Canada.
If you need assistance finding an independent patient advocate outside of these areas, we are here to help. Please reach out!
Corinne Hewko, founder of PatientAdvocates.ca + Senior Patient Advocate
In collaboration with Adrianna Hepper of JKC.dev
