Wednesday, June 1, 2011

Desperately Seeking Patient/Family Opinions!

They're talking about us. The talking never stops, really. The amount of thought, energy and resources that go into exploring and implementing new ideas for improving patient care is truly astounding.

In recent years, patient safety strategies have been at the top of the list for issues to discuss and address. Since the study showing that 44,000 to 98,000 people die each year due to medication error surfaced, there have been very compelling reasons to make safety a huge priority.

In the recent years, I've begun to chime in about this issue of safety myself. It's become a minor obsession, really. Last week I was at a conference in Washington DC where I was surrounded by healthcare professionals of every kind and from all over the globe. For a geek like me, this is always an exciting opportunity to learn more about what is going on with these efforts to improve quality care.

The conference opened with a panel of experts delivering both encouraging and disappointing news. The encouragement generally boils down to the fact that the dedication and passion for patient safety solutions continues to spread so more and more healthcare professionals are making this issue a cornerstone of their research and practice.

The less-encouraging news came in the form of two studies; one from Medicare/Medicaid and one from my home state of North Carolina. Both studies showed that, despite massive efforts, little improvement can be seen in the arena of patient safety. How frustrating and surprising to those who have been working so hard to make hospitals and clinics safer places!

It was that moment that it dawned on me:

How much improvement can we really expect to make if only half of the equation is engaged in the solutions?

If the only people charged with decreasing error are the healthcare professionals, the patient and family are a missed resource, right? I can check the meds inside the little white cup handed to me by my nurse in the hospital, can't I? If someone comes to wheel me out of the room, my family member can make sure they've come to get the correct patient can't they?

I could go on and on here. I fact, I've written a whole book and have an entire workshop dedicated to "Partnering with Patients and Families for Safety". I won't bore you with more ideas or suggestions but trust me, there are many, many ways we can work with our healthcare professionals as our own "patient safety officers."

So assuming you believe me, let me ask the burning question: do you (patients and families) WANT to partner?

I spend a fair amount of my time as a speaker encouraging healthcare professionals to involve us in our care. It's my experience as a patient, and my understanding from other patients and families, that we want to be a part of our healthcare team by being involved in decision making, have tools and permission to speak up if we are worried or if things have gone awry, and being respected as an individual with illness, not as an illness attached to an individual.

I've taken for granted that this directly translates to the concept that patients and families want to be a partner in the healthcare experience. It dawned on me, however, that maybe it's my own special brand of geek-ness that has made me enthusiastic about being a partner in my care. Maybe most people would find this too difficult, exhausting, or outside their "job description" as a patient/family member. Maybe most people would rather not be a part of the care team and leave that to the folks with the scrubs and lab coats!

In broad terms, being a partner in our care means being given the education to understand the healthcare circumstances, the tools to speak up when there is a question or concern and the empowerment to be partly responsible for safety issues within the patient/family realm of control and understanding*. (Forgive this long sentence!)

*Defining "within the realm of control and understanding". As a patient, I could not be expected to look out for errors while I am in surgery, of course. I'm not even awake! Likewise, I could not be expected to monitor my mother's lab results if I didn't know what I was looking at.

So, I come back to the question. If you had the following three things, would you WANT to be a partner in your care?

1. The education to understand the medical circumstances at hand
2. The tools to speak up if there was a concern or question
(As an example, I was recently at a hospital in Tacoma, WA. They asked their patients to use the "Time Out" hand signal if they needed clarification or wanted to correct something being said during morning rounds.)
3. Empowerment from the healthcare professionals that your input was both welcome and needed

There is so much focus on "shifting the healthcare culture" right now. This phrase is heard over and over in most meetings and in every conference where healthcare professionals are talking about improving patient care. Once again, however, the shift in the culture is referring to healthcare professionals changing their attitudes or moving away from old-fashioned ways of taking care of patients.

What about us? Shouldn't we be also shifting the patient healthcare culture? If we stay the same and they change, where will that get us? Is it time for us to let go of some old-fashioned ideals of what it means to be in the hospital or in clinic?

I ask because I'm curious. I ask because I've been assuming I know the answer. I ask because the train might move more quickly if we were on board. I ask because I've begun to build a case for patients and families being trained and held accountable as a partner in the healthcare team, and I never stopped to ask if most would want that. If they don't, I might need to pipe down and stop asking professionals to find ways to partner with us.

Please help me. Be my blogging focus group and let me know your thoughts. The next steps in my career may just depend on your answers! Thanks in advance for your feedback!

Here are the questions I'd like you to ponder and answer:
1. Do you WANT to be a partner in healthcare (for you or loved ones) or would you prefer to no be directly involved in patient care, plan of care, safety measures etc?

2. If you DO want to partner, what do you need to do so? For example, do you feel like you have enough information to do so? Permission? Guts?

3. What do you see as the greatest challenge to partnership?

4. How might you as a patient/family member become a part of the healthcare team today, regardless of your current clinic/hospital and healthcare team? Can you? Please be specific.


emily. said...

hi tiffany,

my name is emily. i'm 26 with CF and CFRD and a longtime fan of yours. first off, i want to thank you for your tireless advocacy on behalf of the CF and chronically ill community. your passion and belief are absolutely refreshing and so inspiring. so, thank you for all you do.

secondly, in response to your question, my answer is a resounding yes. however, it hinges on the third condition you laid out in particular. i've spent my entire "career" a patient seeking to be an equal partner in my care. in different health care contexts, this has been seen as my biggest strength or my biggest vice. i say this to emphasize that in order for patients to be part of the movement towards increased patient safety, their participation has to be truly and genuinely wanted... by all members of the health care team, at all times and for all patients. i think it'll really require culture and systems/operations shifts in most hospitals. i probably don't have to tell you this, but i can't even count the number of times nurse assistants, respiratory therapists and residents alike, to name a few, have rolled their eyes at me or even responded snidely when i have politely asked them to wear gloves before touching me. as a CF patient with MRSA, i want to emphasize that i'm only asking them to comply with their own contact precautions. my goal is surely not to be a bossy patient or make their job any harder or question their authority or competence. all i want is to protect myself from the many dangerous bacteria they may easily be carrying as well as protect others from the MRSA, which i wouldn't wish on anyone.

i think a policy like the one at the tacoma, wash hospital has incredible potential. the message for increased patient participation in increasing safety has to come from the top down and it must infiltrate every provider in the hospital -- from housekeeping to department chiefs. i think you're absolutely right that patients can be an invaluable resource in the plight to increase patient safety -- afterall, who could be more committed to the effort??? -- but i think it is important to recognize how much needs to change before we can really participate.

i dont mean to sound like a pessimist. change has to start somewhere and we, CFers and chronically ill patients, couldn't be in better hands with you pleading our case. so, keep at it and feel free to reach out if i can be of any help at all!


Cystic Gal said...

Hi Tiffany, My initial response, is that I definitely want to be a partner, but I wonder, and struggle, with the best method to be a patient-advocate-partner. It's the HOW that is difficult for me to navigate, though the desire to is strong.

Beth Peters

Casey said...

My wife is a lung transplant recipient, so I consider myself to have a lot of patient experience (but as a family member).

I have to agree with Emily. My experience has shown me that often, patient input is dismissed by those administering the healthcare.

It's a sad but true fact that it's possible to have the intelligence to obtain a medical degree, but lack the personal traits necessary to perform the job well, such as mutual respect for others. The best doctors are those that have both intelligence and respect for their patients.

I am curious, was anything related to this discussed at the conference?

Stacey said...

I completely agree with the need to be a partner in my care, but I think my personality makes this a given for me. I have a few family members that have no desire whatsoever to know any more than they are told or to ask questions of their care providers.

I also sometimes feel like advocacating for myself or ill family members makes me the squeeky wheel that healthcare professionals don't want to have to deal with. I guess I just wish it was easier to be an advocate. I agree with Emily, that the culture doesn't always support this notion.

toastie said...

Hey, this is a desperate problem, indeed. I have recently realized that hospitals will not necessarily make a sincere effort to speak with caregivers/partners unless there's a transplant surgery or...well, I don't know what type of counseling is provided for other types of surgeries. I've just had the experience of having a significant surgery without the benefit of the hospital ensuring I had a reliable caregiver who was going to look out for my interests.

Hospital staff don't always listen well to patients who are groggy and may be inclined to spew insults out of frustration that their pain is not being managed or another problem is not being addressed. A caregiver who sits in the room and doesn't feel empowered to speak up for the patient is not the person the patient wants as their primary bedside companion.

I can imagine what my experience how easy it is for the wrong medications to be administered or for disturbing symptoms to be ignored. The patient is often not in a position to advocate for himself. There's got to be someone else there who is not a representative of the hospital.

I don't know what people do without someone there with them most of the time. Simply having the phone number of a patient advocate posted in the room is a woeful solution. Patient advocates should be proactively visiting patient. Otherwise, it's often too late. They come in to mitigate damage after a patient has already been physically or emotionally harmed.

Anyway, I so admire what you do, and I'm sure you'll continue to make a tremendous difference regardless of how you proceed!

Jen! said...

I think possibly a key difference in how much people want to be a partner in their healthcare is whether they are people who have had health issues for a long time or people who are generally healthy.

My experience is that people who are chronically ill get tired at some point (some earlier on, some later, depending on their personality) of just being told what to do and have had enough mistakes made that they would be ready to learn HOW to advocate for themselves better. But most of my "healthy" friends seem to put all or most of their trust in their doctors and hospitals and would not even think about advocating for themselves.

This is a generalization, of course, but perhaps might help you in your focus. :)

Carrie said...

Yes I want to be a partner, and I try hard to be! My advocating experience has been mostly as a parent, and I think that role has made me more likely to speak up, ask questions, and make suggestions than I may have been if I was the patient. I am not afraid to ask questions, though sometimes I am not sure when is a good time to ask. I love the "Time Out" signal idea - I wouldn't feel like I was interrupting, but would get my point heard. I do think that family members are a great resource as advocates, but it would be hard to ask someone to take on that role for you.

I also really appreciate it when doctors are forthcoming with information instead of making me ask too many questions. Sometimes I have been too involved in the situation to recognize a problem or too busy translating science-language in my head to come up with follow-up questions. I have tried saying to doctors "I like a lot of information. The more I know the less afraid I am" and that has helped them understand how to help me. Setting up communication parameters in the beginning can be a good thing.

I hope these thoughts are helpful, if a bit rambling. I have not had anywhere near the level of experience many of your fans have had, but maybe I can be your "average person" example? :) Keep up the good work!

Kathryn said...

Hi Tiffany,
Since becoming a permanent partner with my healthcare team, I find it easy to pay attention (but not on morophine) to all the drugs I am taking ad whether the docs, et al in the hospital are doing their thing correctly. During a lung lobectomy, I prevented the nurse from giving me a chemo drug intended for the person next door who had the same name! But- I can't expect my family to be there 24/7. I have to be the primary person responsible for my own care. I do my research. I talk with my doctors and nurses and they listen. I have learned to trust but verify. Des that fit into your model?

Tiffany said...

thank you to all of you who have written down your thoughts on this topic! i have read and am logging each response. i hope to reach 50 responses. i will share my findings with you once i have enough data. I SO appreciate you participating!! Please keep bugging your friends to respond too! :) XO

Irene said...

Tiffany, I want and try to be a good partner with my health care team. Overall I have had good coordinators over the 11 years since my transplant but occasionally one comes along that does not take my efforts seriously. Here is what I want from them, so that they can keep my meds, my health, etc optimal. I want them to call me back when I call them. I know they have other patients, etc. but a call back in 24 -48 hours is not out of the question. When I get labs done I don't want them to say, I will call if something is wrong...I want them to call me either way, that way I know they didn't just forget me. And I don't want to hear, " your creatine is a little high", I want the number so that I can help to figure out if something I am doing wrong has caused the change, and give them any ideas that might pop into my head. When I get my Prograf level checked and I seem to be having more tremors.... yes I want to know the exact number so I can tell them..."I am awfully shakey, but that number is not that far out of my range, do you think I have something else going on?"
When "we" go for clinic, labs, spirometry, etc in one day, plus I have over an hour to drive, I get up at about 4:30am, leave home at 5:30am, start registration and the whole routine lasts all morning or longer. This is a big "energy" investment for me. I try my hardest to get everything done that I am suppose to, when I am suppose to just as they want it. It is tiring, but I know how important it is for it all to come together. Then for them not to call you back later to give you any results that had not come back already, etc., to me is like they are not recognizing that we even have an investment in the day. To some coordinators it is just a regular day like any other day, but to "us" it is a busy, tiring, day, sometimes full of axiety, and it helps me if them recognize that. I try my best to be a good patient, stick to all my meds as they ask, drink lots of water, do the "right" things. I ask alot of questions, and my tx doctors tell me that is why I have done well over the last 11 years, I advocate for myself, but there has to be cooperation from all sides, to ensure good outcomes, safety, etc.
Irene Overton

emily. said...

hi tiffany -- i'm wondering if you are ok with me blogging about this topic as it relates to an incident this weekend when my dad was an inpatient in the hospital. of course, i will cite you and include a hyperlink to your blog, but i just want to make sure you feel comfortable with me borrowing and reflecting on this incredibly important issue that you raised. please let me know your thoughts! thanks, emily

Dena said...

PS/Learn more at N

Let me know Tiffany what conferences you are aware of or registered for that may be a good fit for me; I'm interested in exposure w/clinicians and other partners on changing health culture.

Terri said...

Hi Tiffany,

I am a CF Mom and very much want to be considered and treated as a partner. I recently started blogging about being a CF Mom and wrote a little about some of my good and bad experiences being a partner with the medical community. (

We just moved to NC from MD/VA where we were at John's Hopkins (we are now at UNC). Both teams have been amazing at partnering with me. I can't say enough about how much time they have devoted to listening and answering my never ending questions.

The emergency and urgent care medical community have a long way to go in this regard. But, in their defense they don't have the same long term relationship with their patients. Her pediatricians have been hit or miss. I think most of them don't know what to do with us crazy CF Moms!

P.S. Your brother in law Steve Evans gave me a copy of your book when he came out for a bike ride a friend of mine organized to raise money for our Great Strides team. I am reading it now and I think you are awesome! I am so encouraged by the great role models my daughter will have (when she learns to read)