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Patients as partners in care

As a patient, there is still a lack of understanding about what constitutes our true engagement and what we really mean by the term, “patient safety”.

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“The wrist bone is connected to the arm bone…” or at least that’s what the song says. It is a way to realize that our bodies are made up of interconnected parts and a reminder that illness or injury to one part can likely have an effect on another.

Crutches, while great for keeping the weight off an injured limb, might result in some back or shoulder pain. And we all know medication can cause annoying and unexpected side effects in areas completely unrelated to the problem it is intended to solve.

It seems obvious, but often, instead of seeing an interconnected human, some clinicians focus solely on the “problem” to be solved. While that in itself can be a good thing, it can also render us unprepared for the limitations or complications that can result from a treatment, not only temporarily, but sometimes on a long-term basis.

Perhaps we should recognize that we, as individuals, are more than the sum of our parts or whatever ails us. We are social beings having needs and responsibilities towards ourselves, our family and the community. We are also spiritual beings. Our hearts and souls can be broken by much more than worn-out valves or blockages.

Evidence is mounting in support of patient engagement as a vital component of safe health care, but that is often easier said than done, an easy read that you are not quite prepared for when you are caught in the situation.

The barriers to patient engagement in our current system are wide and deep, but not insurmountable. As a patient, there is still a lack of understanding about what constitutes our true engagement and what we really mean by the term, “patient safety.”

There are health literacy challenges. There are gaps in the health care infrastructure for providing social and human services that can directly impact health outcomes. And our historical model of care is so ingrained that even experienced patients and clinicians sometimes fail to speak up or ask questions for fear of being labeled as “difficult.”

Other barriers exist at the system level. We are only just beginning to try to fix our system of fragmented care. Existing workflows in medicine today result in compressed appointments and handoff processes that may not foster good communication or coordination of care.

It is also important for patients and family members who form the patient’s support system to know and understand the urgency of disclosing all medical history and information of the patient –— even those seemingly unrelated to why the patient is admitted in the first place.

As patients, we must proactively state our case in order to be treated as individuals who are more than our disease. To do that, we must be actively engaged as self-advocates. First, we must disclose all of our medical history even if a past healthcare event may seem to be unrelated to our current illness. And then, let our values and wishes be known. This means we must take the time and trouble to be prepared for any emergency at any time –– first, with our complete medical history.

Being prepared also means asking ourselves the hard questions of what really matters to us most, what do we want from our health care, how do we want to live, how do we want to die?

Adding to all that, also considering what we believe are to-do list items like having our affairs in good order, wanting (or not) extreme measures to be undertaken in our behalf should they become necessary.
These are not easy issues, nor ones we like to spend a lot of time dwelling upon. It is a jump shift in a realization that we are the experts on ourselves, yet as a generation who has always wanted it “our way” it is the only way to reach a sense of well-being. It is also being fair to our doctor and his medical team.

With a comprehensive health history, and a clear indication of our values and wishes, the design care processes will give clinicians and staff important perspectives and spark ideas that may be wholly different from their own knowledge, based solely on the most recent diagnostic results.

For almost all of our lives, the doctor was the all and be all, and we took every word to be the Bible. We didn’t ask, we didn’t speak up. We just said, “Amen.”

We need to be aided by a medical community that is sensitive to our new role as partner, and evolve into a health system that celebrates an integrated model of care with the whole patient at the center. Patients need to be partners in care. It’s too important to leave it only to the professionals.

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