Paradox of Patient Empowerment and Care

Paradox of Patient Empowerment and Care

I find myself looking at all my past experience, and making connections between what I know as an educator, and PhD student, to what I have experienced as a patient with critical/chronic illness. Leading off from Autumm Caines’ post about Virtually Connecting focus groups, I want to chat a little more about the paradox of patient empowerment and care. I watched the first focus group and attended the second and third. It was during the third focus group that I was challenged on using a famous Audre Lorde quote “you cannot dismantle the master’s house with the master’s tools” – that challenge led to an ah-ha moment for me – the paradox of patient empowerment and care.

When we talk about the need to empower patients, we talk about patients taking an active role in their healthcare. This is a challenge the often very paternalistic healthcare system – where we as patients are suppose to do what we are told. The language often used is that of “compliance”. It goes further to sometimes even blame the patient. We hear things like “the patient failed to respond to this medication”, rather than “the medication failed the patient”. Language matters.

In one breath, I see patient empowerment as giving patients a larger voice in the healthcare system. I talk about medicine being practiced with patients rather than on patients.

On a side note, I wonder how much of this is an American view point – where here you often (if you live in a populated area and have the privilege of good health insurance) get to choose who provides your healthcare? This is the land of second and sometimes even third opinions – but it is also the land of shopping for healthcare providers that align with your needs/personality, etc. The choice of provider affects the culture. I do think the empowerment situation is somewhat different in a socialized system, where you don’t have the choices in who you see (at least not to the same extent). In Canada, the gatekeeper is your family medicine physician (primary care physician or PCP). When you need a specialist, you go through your PCP. In the US, at least from my experience, your insurance company plays a much larger role of gatekeeper. Your insurance company determines if your PCP needs to make a referral or if you can self-refer. Your insurance company (and bank account) determine which providers are in-network – and which ones you can afford to see. In many cases, self-referral is what happens. When I was diagnosed with cancer, once I had a confirmed pathology, I could self-refer to any surgeon or oncologist. I didn’t need my PCP to make the referral.

Where do I see the paradox? I see it in the need for the healthcare system to provide care. When you are in the middle of a health crisis, you need to know that the healthcare system is going to care for you. You need the maternalistic sense that someone(s) has your best interests in mind, and that they will ensure you are cared for. When you are in crisis, you don’t need, nor do you really want empowerment. You need care.

Going back to the Audre Lorde quote “you cannot dismantle the master’s house with the master’s tools”, the patient empowerment movement isn’t so much about dismantling the tools completely, although it is about dismantling some of the paternalistic tendencies in the system. There are times when we need the use of the master’s tools. We need the expertise of our physicians and other allied health professionals. We rely on them for care. But when we are not in crisis, we also need to know that our voices are heard.

In online teaching, we talk about the transition of teacher from “sage on the stage” to “guide on the side”. In many ways, this is the transition that empowered patients are looking for in healthcare. They want their physicians to be guides rather than sages. The expertise is desired, but also the recognition that patients carry prior knowledge and expertise. I like to use the phrase “I am an expert in my body”. My medical oncologist is an expert in breast cancer and the pharmaceutical treatments for it, but he is not an expert in my body. I am the one that is living in it.

Do you see a paradox between patient empowerment and care? How is patient empowerment different in socialized medicine settings? 

4 Replies to “Paradox of Patient Empowerment and Care”

  1. In NHS (UK) you are nothing but data. Doctors and GPs (I guess they are a bit like PCPs) don’t have the time to know their patients, most don’t even read patient files (what can do for you is a common question we get, and then we start all over again), and most are overloaded we hear. I wholeheartedly agree with scottx that it’s a great big machine that processes you like an object,

    I really like your ideas about patient empowerment and after reading your post I feel like this is what I should demand from doctors regardless of the state of the NHS. Getting there though requires courage and nerves strong as steel.

    1. Hi Susan,
      Yes, that shift from patient as object (and yes, GP in UK is the same as PCP in US, family doc in Canada – and consultant in UK is specialist in NA) to empower patient is one that is rippling through various systems – including in Canada and UK. This model will privilege those who have the knowledge to self-advocate.
      I think there is an interesting challenge in developing a relationship of trust with your doctors. I have a lot of doctors. I saw one the other day I totally didn’t trust. She didn’t listen to me or didn’t respect that I actually knew my body so knew that what she thought was the problem really wasn’t the problem – which tests confirmed that is wasn’t what she said, but didn’t really test what it was. One expression I like to use is that “I am the expert in my body”.
      One of the tenets behind patient-centered-care is that when the answer isn’t simple (e.g if it is a broken leg you set it – there isn’t a lot of “choice” in treatment), but if there are multiple options with long-term life effects (e.g. cancer treatment, chemotherapy), then the patient should be involved in the treatment decision – they should be provided the options and the physician should get to know the patient well enough to make recommendations based upon that specific patient, rather than a patient-neutral protocol. Good theory, not everyone gets it though.

    2. Suzan, reading about the NHS does remind me of the Canadian system but I think all systems are due for review and rethinking and maybe the current political mess will force this reinvention on us. Looking at an “economy” that leaves so many in poverty or a “medical care” system that fails most patients in one way or another, it’s clear our organizational models are non-functional.

      I’m reading a few papers on doctoring and they sound wonderful but there’s no way to imagine them as anything but fantasy at the moment.

      Suffering, Hope, and Healing
      Jack Coulehan
      “Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.”
      “The term compassionate solidarity summarizes an alternate model of the physician–patient relationship. Compassionate solidarity begins with empathic listening and responding, which facilitate objective assessment of the others’ subjective state; requires the physician to develop reflectivity and self-understanding; and is in itself a healing, hope promoting act.”

      To me, the idea of compassion can only work in situations where there is continuity in the doctor/patient relationship–definitely not possible in current models.

  2. Interesting question. Now that I have a PCP that’s stable and reads my files so she know who I am. That’s as much power as I’ve had in years and as much “care” as the socialized medical system can give. We can work together to get all the technical things I need like day surgeries for skin cancer, blood tests and prescription refills.

    This is now as much care as I want. First, it’s much healthier to avoid the whole expectation of “care” form the socialized medical system. It’s a great big machine that processes you like an object, ignores your status as a human and will, if challenged, hurt you, isolate you and then belittle you for not understanding how much they care. If you’re sick of course you need to visit one of the medical service centres, endure it as best you can, and leave.

    As for the patient’s voice being heard, my experience is that outside a one-on-one conversation with your primary, your job is to shut-up.

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