In the patient empowerment corner of my world, a complaint or fear I hear voiced by patients is the fear of retaliation. They are afraid that if they speak up to their doctors, or ask questions, or make their own decisions, then they will get substandard care. The provider will be so upset, he or she won’t provide what the patient really needs.
I call this The Waiter Will Spit In My Soup Syndrome.
I’ve never had a conversation with someone who can identify a time this actually happened to them – where they got care that wasn’t up to par because they advocated for themselves. But I have heard from people who were dismissed by their doctors (I call that a provider divorce). I’ve even heard from people who were blackballed or blacklisted by providers. That makes it a question of quality of care – or a total rejection of care.
And the truth is – it doesn’t matter why a patient is fearful of sticking up for himself. It’s his perception. It’s wrong. And something needs to change.
YOU can be the change agent. YOU can be that buffer – the person who runs interference between the patient’s fear of retaliation and making sure she gets exactly what she needs.
I know – you’re probably saying, “Well – duh! Of course! That’s what we do!”
But I’m going to take this concept to a different level.
Just back at my desk after the last of this Fall’s (2013) three APHA workshops, this one held in Los Angeles – another great experience meeting so many passionate, inspirational advocates and soon-to-be advocates….
As those who took the marketing workshop learned – one of the most important things we should do is to measure the effectiveness and client satisfaction of our work once it’s completed. To accomplish that, after each of the workshops, I surveyed attendees to see what they found most useful and to understand what didn’t work so well, too.
The answers varied. Many cited as most useful the business workshop’s session on how to price your services using their value as the foundation. Others mentioned marketing by focusing on benefits instead of services. Some advocates appreciated the more in-depth information about maximizing their web presence. Still others finally understand how to get a client to say “yes” to a contract.
But there was one element that was mentioned most often among almost 150 surveys.
Sometimes a conversation gets started in our APHA Forum that brings me up short. (One reason I SO love the Forum!)
One of those conversations was kicked off this week by a member who posed a question: are other members asking potential new clients whether they have guns in their homes?
I’m not a gun person, and I live in an area where we just don’t think about guns much, so I really didn’t understand the question at first…. until others chimed in.
It’s about safety – which, of course, makes perfect sense. Many members followed up Marie’s question with comments that showed the comprehensive nature of those safety considerations: that it’s not just about a client’s safety (might she ever try to commit suicide?) but about the advocate’s safety, too. (Might the client get angry enough with his own perceptions or frustrations that he would take it out on his advocate?) Further, it’s not just about guns. It’s about violence wrought of frustration and fear. A number of scenarios and solutions have been shared in the Forum.
It got me thinking about the broader picture: How many of us think about the potential dangers we are exposed to in our profession? I think many of us ponder the threat of lawsuits….
But I’m not sure many of us think about real physical, safety-related threats – problems we can prevent up front if we are aware of them – which goes back to why I value the conversations we have in the Forum. It’s possible this particular conversation will save lives.
Other dangers I can think of:
OK – so I confess. I talk baby talk to my dog. He’s little, and snuggly, and adorable – and it’s just so easy to call him cutesy names and fall into that simplification of short sentences that we do with babies, too.
Just what is it about babies and puppy dogs that begs us to speak baby talk to them? I think that it’s that aura of vulnerability that surrounds them. Vulnerability that begs us to be reassuring or coddling or just drippy-sweet. They clearly need caretaking or caregiving, and we, as their protectors, want to make them feel secure and… well, loved.
Thus, babytalk. It makes us feel as if we are providing that security and happiness we know they crave. We think it makes us sound supportive and helpful. It just seems to come so naturally.
An email I received from an APHA member this week made me think about this topic. She shared her own elderly mother’s experience with a home health worker. Hazel, the elderly mother (not her real name) is sharp as a tack, but knew she could use some assistance. Our member helped her mom, Hazel, find a private advocate. Unfortunately, it didn’t go so well. Turns out Hazel got frustrated because she felt pressure to do things, or sign things, or make choices she didn’t want to make. Specifically she felt as if her advocate wouldn’t listen to her or trust her ability to make decisions.
One aspect of healthcare that not enough people understand is about the role of technology for providing medical services: how it should be used, when it should be used, and why it should be used.
That disconnect in understanding creates a huge gap in the healthcare continuum that we patient advocates fill – immediately understood, instantly appreciated, and more than worth whatever a client will pay for it.
Put simply: tools can’t provide the hugs and reassurance that individuals crave, and need for survival.
There is a huge difference between directly providing care coordination, and using technology to do so.
- Directly providing care means face-to-face, sit across from, look into the eyes of, one-on-one handholding.
- Technology, in the form of telephones, the web, skype, IMs, online medical records, apps, the cloud, or any other digital or non-human format — is just a tool.
- Tools are not providers and…
- Providers are not tools.
Both are necessary, useful and appropriate when used correctly. For example:
- If I am simply looking up information about my symptoms online, then all I need is tools – a computer, and access to the internet. I’m not looking (at that point) for a human being to help me. In fact, I’d probably prefer to be left alone with my tools. My interest is in obtaining information, to fulfill an intellectual need.
- But if I’ve just been diagnosed with something difficult, or I’ve received an overwhelmingly huge hospital bill in which I see obvious errors, then a tool isn’t what I want – I want a human being to explain things and fix things for me. Even if my expectations are unrealistic – it’s a human being I must connect with to move forward. My interest is in obtaining reassurance, reducing my feelings of vulnerability, maybe curtailing my fear, fulfilling an emotional need.
This point came up recently in three separate conversations with people who really just do NOT get it. All three are in the process of building online tools for one audience or another, all relating in some way to advocacy, all talking about “scalability.”