By Penney Cowan
Co-founder World Patients Alliance
Each of us is involved in some way as a patient at some point in our lives. It is unavoidable. Even if it is for a simple annual checkup or injury. My question to you is how engaged are you with your health care professional (HCP) during your visit and do you ask questions during your visit? Or are you one of those who think of all the things you should have said and questions you did not ask after the interaction with your HCP?
Chances are many of you take on the passive role of a patient and sit quietly and listen to what the HCP had to say. Questions may occur to you, but they are never spoken. Instead, you listen carefully and follow his or her instructions without ever asking questions that may have made a significant difference in your understanding of what took place and the recommendations provided. Of course, there are those who left the role of a passive patient a long time ago and became an active participant in your health care. We should all be active participants in our health care, but that is not so easy for some. What is all this discussion about patient centered care and what does it mean for each one of us?
The World Health Organization defines patient centered care as: “Patient Centered Care is care that is respectful and more responsive to the needs of people and strives to keep them healthy and free of illness. It means that people know where and how to seek care, they know what to expect from providers, and they are also aware of their responsibilities.” Yes, the last part of that is important. We share in the responsibility of health care.
What does that mean? It means you just don’t go to physical therapy and then go home and wait until your next appointment, you follow through with the program designed for you. Medication prescribed for you should be taken as directed. Diet is one of the most difficult recommendations to adhere to. We tend to tell ourselves that we will start tomorrow, or it won’t hurt if we use extra salt on our food or eat dessert. We are an equal partner in our care and that means we have to be an active participant in every way. How would you feel if you where to have a specific treatment or therapy and the HCP only provide half the care they should or never really finished the therapy. Probably it would not be effective.
You do have rights and they are yours to be used when interacting with any HCP. You need to understand your rights as a patient and your interaction with the entire health care team. Here a few of them:
· Receive care that is respectful of your personal beliefs, cultural and spiritual values
· Have things explained in terms that you can understand and to have any questions answered concerning your symptoms, diagnosis, prognosis and treatment
· Appropriate assessment and management of your symptoms, including pain[i]
In a nut shell it means that you are an integral part of the treatment team. You have the right to share in the decisions about your care, to refuse a treatment or delay it until you have more information. Asking questions about the treatment options is important so that you understand exactly what to expect before, during and after. Fear of the unknown is a powerful controller over our actions. That is why it is critical that you ask questions and understand what was recommended and the possible outcomes. When given a new medication, just don’t fill the prescription, ask questions. What are the side effects, should you take it with food or on an empty stomach, what time of the day should you take it and what are the restrictions while taking the medication?
Years ago, I would never have been so bold as to question my HCP about a treatment. I was intimidated by them. I believed that they knew far more than I did and what was best for me. I would never have thought to refuse a treatment that I was not comfortable with. If they told me to take a new medication, I had no idea why or what to expect, I simply took it and hoped for the best. Referrals to other HCP were something that I followed without question. I never really understood why I was going to see the specialist or what they might have to offer, or even if it were worth my time, effort and perhaps expense. I was a passive patient putting my health care wellbeing in the hands of my HCP without question.
No one told me that I had choices, that I had rights. Clearly there was no internet years ago to look up medications, treatment or conditions. But that didn’t mean that I still did not have the right to know as much as possible about any recommendation given to me. Perhaps it was out of respect for the HCP, after all I was taught to respect my elders and those in authority.
Today I can honestly say, if only I had known what I know now. I had every right to be part of the decision making in every step of my care. When we say patient centered care, that means that the patient is in the center of the treatment team, an important part of all decisions. The decisions should be based on your personal needs and desires. After all who knows better about your condition, pain or therapies and the impact they have on you and your family/caregiver than you?
Yes, families or caregiver. They are actually part of the decision and have observed your daily life. They know about how well you can care for yourself, your appetite and sleep, your ability to function and take part in daily activities. Keep in mind that your health and impact on your life also has a direct impact of those around you.
The best way to ensure that you are part of the treatment team and share in all decisions is to be prepared for your visit. Here are a few things you should keep in mind before your next visit to your HCP.
· Write down why you are there.
· If it is a new visit, clearly state what is wrong.
· If it is follow-up visit, explain what if anything has changed since your last visit.
· Include what has improved since your last visit if it is a follow up visit.
· Write down any questions you have about any part of your treatment. Include what you don’t understand about possible outcomes and options.
· If you have seen a new HCP, or use over-the-counter medications, tell them.
· Take someone with you so that they can also listen to results, advice and recommendation.
Patient centered care is important to each one of us. All the research, education and resources available to HCP are there to benefit you and provide the best care possible based on your personal needs. The question is, are you getting the best care possible? Are you an active participant in your care as an equal part of the treatment team or are you a passive patient? We all have choices in our health care, we have a voice, we have rights no matter who we are, where we live, our race, creed, gender or our socioeconomic status. Become an integral part of the treatment team just by speaking up and sharing in all the decision making about your care. Empower yourself to have the best health care possible.
Resources for more information:
1. Person-centred care made simple. What everyone should know about person centred care. Published by The Health Foundation, London United Kingdom. January 2016 https://www.health.org.uk/sites/default/files/PersonCentredCareMadeSimple.pdf
2. People-Centred Health Care: A Policy Framework, World Health Organization, September 2007 https://apps.who.int/iris/bitstream/handle/10665/206971/9789290613176_eng.pdf
3. Person-centered Care: What is it and how do we get there? National Institute of Health, Royal College of Physicians, 2016 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6465833/
What is Patient-Centered Care? New England Journal of Medicine, January 2017, https://catalyst.nejm.org/doi/full/10.1056/CAT.17.0559
[i] Taken from Brown University Health & Wellness Health Services, August 2018, for full text: https://healthservices.brown.edu/about/patient-bill-rights-and-responsibilities#:~:text=Receive%20care%20that%20is%20respectful,of%20your%20symptoms%2C%20including%20pain