Patient Centred Care a well used and much written about descriptor but what is it? In practice, does it really mean full patient involvement and engagement in choices in their care?
Early on, our family chose to use different terminology to describe what we believe is the right kind of care. It is “patient partnered care”.
To us, patient partnered care means that the patient is a full, decision making partner in the development of, the application of and the beneficiary of the plan for our care. These are the important components of patient care, regardless of how it is described.
Studies have shown that the more informed and engaged the patient and their families or close friends are, the better the health outcomes are for the patients involved. Isn’t this common sense? More engagement means a commitment to the kinds of things that need to be done to help the healing or ensure the right treatment. It also means that if something is not going as planned, or there is an error or omission, the fully informed patient or our family knows it and can help make sure that the correct action is taken. For our own good, we must make sure that we (or our family or friend) is fully informed and not simply assume everything is being taken care of for us. Too often there are gaps.
The next person that has been shown to be very impactful on the care of the patient is the family doctor. Where the doctor is fully engaged and works closely with the patient to pursue the patient’s goals for their care, much better outcomes are achieved. They are in the position to know what should be done and to explain the plan and to provide the personal information to patients ensuring that the patient is fully informed and able to be engaged in their care. Where patients do not have a family doctor, or the one they have is not motivated to make sure their patients are fully informed, the risks become elevated so that if something does not go as it should, this may be missed.
If a patient is able to stay within their family doctor’s world, then the risk is less. However, often further testing and treatment requires the involvement of people outside the primary care clinic level. It is very important that both the patient and their doctor are kept fully informed of all that takes place. For example, it is not automatic for the family doctor to be informed if a patient needs to go directly to emergency or some other treatment centre. The information about the trip will be recorded where it happens, and may be accessible by the family doctor, but without a complete and well-connected system that has built-in alerts sent to the family doctor, that information just sits in that silo. Unless the patient, or someone else makes sure the family doctor knows of the event, it is very unlikely that they will be able to either do follow-ups or even add it to the patient’s records they maintain. This is especially true where prescriptions are given by different doctors are concerned, sometimes without knowing what each other has done.
If one steps back and looks at this from an overall system’s level, the lack of continuity and collaboration are serious breaks in the system. We don’t believe it is a “system” without the patient and our chosen family members or friends and our family doctor being fully informed on a real-time basis.
As soon as one moves further into the “system”, where specialists are concerned, it is more difficult. There are some great specialists that really see that they are in a place and have the responsibility to be part of the team supporting the patient and our family doctor in our care. Perhaps because of the pressure of the system to deal with a large number of patients, or because of their own attitude of superiority, other specialists are more process minded simply doing treatment transactions. This process then takes on a character where communication is very limited and both the referring family doctor and the patients are less informed and are unable to be fully engaged. While working as an individual rather than part of the team may suit the specialist who is more interested in volume than quality, it is not good care and certainly not patient partnered care.
Communication with the patient, ensuring we have all of the information at any point in time is critical. Indeed, some doctors are now providing their own notes on their patients to the patients, and a few are encouraging the patients to contribute their notes to the combined records as well. This becomes a very powerful tool to not only ensure that everyone is fully informed, but it also can provide some early signals of things that are going very well, making the steps of gaining or maintaining good health easier, or it may provide early warning signals of something that needs attention to save greater intervention or treatment later.
It takes a “team” effort to deliver “care”. Anything less is simply individuals doing single treatment actions. Lack of continuity and teamwork is dangerous, sometimes fatal.
It also is going to take a different kind of teamwork to change the present culture of the “non-system” from too many instances of isolated treatments to move to true patient partnered team-based care. This new team must include patients, families, the healthy public as well as all the people inside the system that wants to see these improvements. Together we can drive the change in managerial and political priorities and get to the positive system culture of teamwork itself.