Last week the Robert Wood Johnson Foundation published the The Guided Principles for Patient Engagement developed by the The Nursing Alliance for Quality Care. My first thought was, yeah yeah yeah yeah, someone has too much time on their hands. The article went on to describe many people and organizations were involved in the creation of these principles and I decided to give it a second look. Here they are.
- There must be a dynamic partnership among patients, their families, and the providers of their health care, which at the same time respects the boundaries of privacy, competent decision-making, and ethical behavior.
- This relationship is grounded in confidentiality, where the patient defines the scope of the confidentiality. Patients are the best and ultimate source of information about their health status and retain the right to make their own decisions about care.
- In this relationship, there are mutual responsibilities and accountabilities among the patient, the family, and the provider that make it effective.
- Providers must recognize that the extent to which patients and family members are able to engage or choose to engage may vary greatly based on individual circumstances. Advocacy for patients who are unable to participate fully is a fundamental nursing role.
- All encounters and transactions with the patient and family occur while respecting the boundaries that protect recipients of care as well as providers of that care.
- Patient advocacy is the demonstration of how all of the components of the relationship fit together.
- This relationship is grounded in an appreciation of patient’s rights and expands on the rights to include mutuality.
- Mutuality includes sharing of information, creation of consensus, and shared decision-making.
- Health care literacy is essential for patient, family, and provider to understand the components of patient engagement. Providers must maintain awareness of the health care literacy level of the patient and family and respond accordingly. Acknowledgment and appreciation of diverse backgrounds is an essential part of the engagement process.
Okay, so I’m still not overly fond of some of the academic language and some of this should be ingrained in us during nursing school. That is not to say that these guiding principles do not have merit.
Look at the second bullet. We got the confidentiality thing down – even before HIPAA. The second sentence goes on to say that ‘patients are the best and ultimate source of information about their health status…’ Okay, so nobody ever says anything aloud but isn’t this just a little different and little better than the attitude that the patients really don’t know what we know and as such, we take their information lightly? We have all been burned by bad information and outright lies from patients. Maybe the semi-truths and lies tell us as much about the patient as the credible information.
I love the idea of ‘mutual responsibilities and accountabilities’. We always hear about patient rights. I do not begrudge patients’ rights but as nurses, we have rights that should be respected by patients, employers and even clients.
Respecting boundaries was never an issue in the hospital. In home health, I have heard a lot of really interesting stories. The most extreme story was one where the patient tipped a nurse for extra services not covered by Medicare and are only legal in some parts of Nevada. Long before you reach that extreme, keeping a professional distance between yourself and your patient in the home environment can be difficult. You are treated like family and begin to feel like family and families don’t discharge each other simply because there is no Medicare skill.
Advocacy for patients is a fundamental role of nursing. I would estimate that half of all MSW referrals are issues related to advocacy that should be part of our job. We need to quit giving our jobs away. Usually we are pretty good about it but I have read far too many charts of patients who do not meet Medicare coverage guidelines discharged with no soft landing.
The last bullet says something very important as well. It is the one worth reading first:
Providers must maintain awareness of the health care literacy level of the patient and family and respond accordingly. Acknowledgment and appreciation of diverse backgrounds is an essential part of the engagement process.
I think that may be a way of saying we have to meet the patient where they are. In fact a lot of these guiding principles can be restated as ‘Meet the Patient where they are’.
I might have simplified the language a bit and included something about patient goals but I wasn’t invited to participate. Overall, I am grateful to the National Alliance for Quality Nursing Care and believe they have spoken very well on behalf of nurses.
We’ve come a long way from being the handmaiden of the physician. Thanks National Alliance for Quality Nursing Care. Next time y’all get together give me a call.
What do y’all think? Would you add anything? Delete a bullet or two? Do you think we need such a statement? Why or why not?
Your boundary comment struck me more than anything else you said. Why? Because yes, we can become like family. And that’s not necessarily a bad thing. When we are the only one that patient see’s that week, we can become the only one who notices or even care when they don’t answer the door. If that’s not family, I don’t know what is.
I see nothing in there about cultural recognition. It’s something very important that is lacking. A story from a couple of jobs ago.
We had a very long term patient receiving a service that was skilled every 2 weeks. She was upper class in her native country, and in her 90’s. When the nurses came, she always served tea. It took very little time to sit and pass a few minutes with her while assessing how she had been and how she was doing. It had nothing to do with thirst, and many agencies would have prevented it. But it was a cultural imperative for this wonderful woman. And in the home, accepting, acknowledging and respecting the cultural needs of your patients will get you further than many of the points listed above.
Come to think of it, it will get you further in the hospital too.
It will get you a lot further in life, too.
I thought that the last statement about recognition of diverse backgrounds sort of touched on that but you are correct. While everything else need to be shortened, that particular bullet should have been expanded upon. I got a cute little app for my iPad called iGeriatrics. In it there is a section called ‘cultural pearls’. It offers information such as Japanese patients may offer gifts for good care and you should show appreciation. You should avoid first names with Japanese patients. You should not shake hands with a female pakistani patient and extreme respect is expected – stand when patient enters room. If you are taking care of a Vietnamese patient, their personal past may include war related violence and in their culture you should avoid shaking hands, direct eye contact and a loud voice. You should also offer objects with two hands.
I personally find all of this fascinating. In my mindset, it goes back to meeting the patient where they are. Learning about your patient’s cultural preferences is just as important as reading the history and physical from the hospital. You have failed the patient if you cannot establish trust.
As far as boundaries, it isn’t all bad that we become family to the patient but it is something to watch for because it is difficult to be objective about a family member. When my son was little, my friends would call and ask what to do when their kids had a fever. I calmly told them what to do. When my son had a fever (only twice growing up which is how I escaped being institutionalized), I called the doctor about three times in five minutes until he finally called me back. He ordered Valium. ‘Why?? You think he’s going to have a seizure?’ The pediatrician patiently explained that the Valium was for him. I was to take it so he could relax and sleep. Otherwise, he would be on the phone with me all night long. Medicare doesn’t care how much the patient needs you personally. They care if the patient meets payor source guidelines. It is heartbreaking to discharge a patient who really does need you.
So, you take a step back and realize that you may be the only one who cares about them now and start rallying up the troops. You do your best to find her some companionship through her church or a sitter service. You call her relatives and ask them to visit. YOU stop by on your way to and from work. You give it your level best just as though you were leaving town and needed someone to look after your relative. In my career as a nurse, I have seen countless patients. Some I never even saw awake. But there are always those that steal your heart. When that happens, you dont quit caring for them but you do realize that your objectivity may be compromised just a bit. At least that’s been my experience. (Discharge?? He just got a new hangnail! It would be wrong to discharge him now!)
I’m not sure WHY we need “guiding principles” other than the one that says (paraphrased): “Do unto others as you would have others do unto you.” There is also: “Love your neighbor.” All that “high-tone” verbiage makes me tired. You said, “Medicare doesn’t care how much the patient needs you personally. They care if the patient meets payor source guidelines.” Truer words were never spoken. If someone has the audacity and tenacity to make it to 95, they need us. If they have to pay a neighbor $20 to drive them to the doctor, they need us. If the only soul they see all week (or all month for that matter) is a home health nurse, they need us. We are told by the DME folks that “Medicare won’t pay for a shower bench,” but they will pay for a broken hip when that poor old soul falls trying to get a shower.
And what about all these Medicare recipients who switch to an HMO and have their home health denied after the first episode or two and then end up in the hospital a week later. They’ll pay for THAT. Then the patient ends up in the nursing home.
I have a “guiding principle”: Care for those who once cared for you. How ’bout that?
There will come a day when you refer to age 95 as the days of your youth if all that it takes is audacity and tenacity to make it to age 95. I wholeheartedly concur.
As an approach to nursing, I think that ‘high-tone’ verbiage is a bit much. I have sat in many meetings where policies were designed. What tends to happen is that you get group of people together and try to write something that everyone agrees with and then you keep refining the language until it is so precise that it says nothing original or useful. Still, taking Medicare out of the picture for a minute, I do think they did a pretty good job of defining a 2012 approach to nursing. Notice they said nothing about assisting physicians or carrying the MD message to patients.
What they did not include is one a guiding principle that I hold sacred. I am not sure if it belongs in the guiding principles for patient engagement but I personally would have liked to have seen something nurses respecting each other. That means respecting their approach to care even if it is different than what they might have done unless there is a problem with it. Because we should, at every turn, meet the patient where they are, I think some of the recipes for patient care – pathways, DSM, etc. are insulting to nurses who really think about how best to care for their patient. It absolutely does help to have easy access to best practices but some of the pathways I have seen are useless and almost none of them account for people with multiple diseases.
Some of the ‘worst’ nurses in the world turn into fabulous home health nurses when they are finally allowed to think independently. If they cannot make independent decisions and judgments, they may need a little more time in a more supervised setting until they become more confident.
So, when you follow a nurse who alphabetized the medications, admired photographs of the patient’s new car and lined all the patient’s left shoes up in a row and threw the right ones in a corner, don’t just assume she’s nuts. If you read in a chart that your patient and the nurse had tea before the visit, maybe that is the custom in the woman’s native country as Susan pointed out. When a nurse jogs around the block before entering a patient’s house, maybe that’s how she avoids returning the stroke victim’s insults.
On the other hand, if the nurse is wearing a snow parka in the July heat, sings show tunes at the top of his lungs and insists the patient go swimming with him, call someone. You are not so good as to handle that.
This is a very true comment, Cultural diversity in America today is parmount and clinician need to understand this