The Empowered Patient

The Empowered Patient

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When you or a loved one enters a hospital, it is easy to feel powerless. The hospital has its own protocols and procedures. It is a “system” and now you find yourself part of that system.

The people around you want to help, but they are busy—extraordinarily busy. Nurses are multi-tasking. Residents are doing their best to learn on the job. Doctors are trying to supervise residents, care for patients, follow up on lab results, enter notes in patients’ medical records and consult with a dozen other doctors.

Whether you are the patient or a patient advocate trying to help a loved one through the process, you are likely to feel intimated—and scared.

Hospitals can be dangerous places, in part because doctors and  nurses are fallible human beings, but largely because the “systems” in our hospitals just aren’t very efficient.  In the vast majority of this nation’s  hospitals, a hectic workplace undermines the productivity of  nurses and doctors who dearly want to provide coordinated patient-centered care.

At this point, many hospitals understand  that they must streamline and redesign how care is delivered and how information is shared so that doctors and nurses can work together as teams. But this will take time. In the meantime, patients and their advocates can help improve patient safety.

Julia Hallisy’s Story

Julia Hallisy learned about patient safety the hard way. Hallisy’s daughter, Kate, was diagnosed with an aggressive eye cancer when she was five months old. Over the next decade, she went through radiation, chemo, reconstructive surgery, an operation to remove her right eye, a hospital-acquired infection that led to toxic-shock syndrome and an above-the-knee amputation.

“My husband and I spent years of our lives in hospital hallways, waiting rooms, and emergency rooms,” Hallisy recalls. “We became savvier and more educated the longer my daughter’s illness went on. . . .

“We slowly came to realize that the quality of healthcare she was receiving, as mediocre as it sometimes was, was actually far superior to the care other families around us in the hospital were receiving. They began to notice this discrepancy as well, and they wanted to know how we knew the things we did and who had given us such valuable ‘inside’ information. We had to explain to them that we had come across everything we knew . . . by watching our daughter suffer through medical errors, misdiagnoses and inexperienced medical providers, and investigating the mistakes and taking steps to make sure they didn’t occur again.”

Kate was treated at some of the finest hospitals in the San Francisco area.

She died in 2000. Kate was eleven years old

Empowering a Patient,  an Advocate, or a  Survivor

How could a mother handle such unspeakable grief? Hallisy decided to write a book that might help others. In 2008,  I reviewed it on HealthBeat.

At the time I wrote: “Remarkably, The Empowered Patient is not an angry book. It is not maudlin. To her great credit, Hallisy manages to keep her tone matter-of-fact as she tells her reader what every patient and every patient’s advocate needs to know about how to stay safe in a hospital.”

Recently, Hallisy emailed to tell me know that the book has now become a non-profit foundation: The Empowered Patient Coalition.

Go to their website and you will find fact sheets, checklists, and publications including, A Hospital Guide for Patients and Families that you can download at no charge. I found the Hospital Guide eye-opening. I have read and written a fair amount about patient safety in hospitals, but it told me many things that I did not  know.

For instance, did you realize that it is perfectly appropriate to ask your surgeon how many times he has performed this particular operation?

Are you aware that you (or your advocate) can—and should—read your medical records while you are in the hospital? (This may be the only way you will find out that your doctors disagree with each other about your treatment.)

Do you know what to do if you if you request a consultation with a more experienced physician because you have serious questions about the decisions made by residents –and hospital staff don’t agree that you need to talk to someone higher up on the ladder?

Below, excerpts from the Hospital Guide, and my comments in italics.

Patients and Patient Advocates Can Have Power

A patient and the loved one who  serves as her “advocate” can be empowered. Finding an advocate may not be easy.  Your patient advocate needs to be someone who has the time to be with you at the hospital, “or can take time off work,” Hallisy advises. And “the advocate should be comfortable asking questions, speaking to doctors about the patient . . .  Remember, not all people are capable of being assertive,” she writes  – no matter how much they care about you.” (Her emphasis.)

Let me add: I realize that many adults don’t have someone who can be with them at the hospital full-time. But two or three close friends or relatives might share the job—though they will need to communicate with each other on a daily basis. And one individual should be the “point person” for the team.

The Patient’s Relationship with Hospital Staff.

Protecting yourself does not mean “demanding your rights” as a patient.

Hallisy recognizes that, like patients and patients’ advocates, many hospital workers are stressed.

In her book, she writes: “Don’t wait for staff members to breach protocol and then jump on them.  Avoid awkward situations by announcing your concerns to staff well in advance of the start of the procedure . . .  I always found it helpful to put the onus on myself by saying something like ‘I just don’t feel comfortable unless everyone wears gloves.’”

The truth is that even brand-name hospitals often are understaffed and their nurses are rushed. Studies show that even at our prized academic medical centers, as few as a third of physicians and nurses may be complying with hand-washing standards. Yet Hallisy notes, “patients are hesitant to say anything because they don’t want to seem to be suggesting that hospital staff aren’t ‘clean.’”

She offers a simple solution: “When our daughter was ill, we taped an eye-catching, easy-to-read sign to the door of her room. Using colored paper, we wrote ‘PLEASE WASH YOUR HANDS AND WEAR GLOVES AS APPROPRIATE’ in large, black letters. . .  The increase in compliance was so immediate and so dramatic that the infection control specialist made her own signs and placed them on the doors to all of the rooms in the pediatric oncology unit.”

Don’t Be Shy About Asking Questions

But while you don’t want to be confrontational, protecting yourself or your loved one does mean asking questions.

First, you should know who is taking care of the patient. “It is always appropriate to ask a staff member about their title and level of training or experience,” the Guide advises.

There are gracious ways to do this. For instance if a very young doctor comes into your  room, you might ask “Are you the attending physician?” (Chances are he isn’t; see the hierarchy below. But he’ll be relieved that you thought he might be.)

If  he explains that he is a resident, later, you might ask “how long have you been at this hospital?” .If it’s August, and he’s in his first year,  he has been a doctor for one month.

This does not mean that he should not be caring for you, but another, more experienced doctor should be supervising him. If  you never see that other docotr, or you feel you are in trouble, you should ask to talk to the “Chief Resident” or the “Attending.” Also ask if the hospitals employs “hospitalists” — doctors who are reponsible for co-ordinating the patient’s care. mm

Your Healthcare Team

“A healthcare team requires collaboration and communication” the Guide explains. “Many people are involved. The charts below will help you understand the levels of authority.” Sometimes, if one person cannot answer your questions, you may need to ask for a “nurse supervisor,”  a “nurse manager, ” or an “attending.” But you can’t ask if you don’t know their titles.

Physicians

Attending Physician

Fellow

Chief Resident

Senior Resident (Third year resident or above)

Resident (Usually second year resident)

Intern (Resident 1 or PGY-1; first year of residency training)

Medical Student

*ATTENDING PHYSICIANS are the most senior doctors directly responsible for your care. Simply stated, they are the bosses of the house staff. They are responsible for the quality of care delivered to each patient under their watch and they may also train and supervise residents (doctors–in-training).

If you encounter a problem that your attending physician cannot resolve, ask for the Department Head or the Medical Director. Department heads are doctors who manage specific areas in the hospital (such as orthopedics or pediatrics).  Medical directors oversee all of the staff doctors.

Nursing Hierarchy

Nurse Supervisor or Nurse Manager

Advanced Practice Nurse or Clinical Nurse Specialist

Charge Nurse

Staff or Bedside Nurse (RN)

Licensed Practical Nurse (LPN) or Licensed Vocational Nurse (LVN)

Assistive Personnel

(Nursing Assistants, Patient Care Assistants, Nurses’ Aides, etc.)

NURSE SUPERVISORS and NURSE MANAGERS are part of the leadership team and are considered “nursing executives.” There is usually a nurse manager or nurse supervisor available 24 hours a day who is the direct supervisor of the charge nurses.

With few exceptions, a nurse manager or supervisor will be available to patients. Nursing supervisors and nurse managers are overseen by a Director of Nursing or a Chief Nursing Officer (CNO).

*If the Nurse Manager cannot address your serious concerns”  the Guide says, ”ask for the Director of Nursing or Chief Nursing Officer (CNO).”

Questions Patients and Advocates Should Ask

Here are just a few questions, and examples of how to ask them:

“This pill doesn’t look like the one she got last night. Could you double-check just to make sure that this is what the doctor ordered?”

“Do you have a palliative care specialist who could talk to my husband about his pain? The medication he’s taking isn’t t controlling it, and I’m  worried.”

When doctors are ordering tests, the Guide advises: “Tell your providers that you are interested in understanding why each test is being ordered and what information it will provide. Ask, ‘How will this information affect my treatment plan’”?

Ask regularly if it’s time to take out your IV line. ( IVs should be removed when they are no longer needed. The longer they stay in, the higher the odds of an infection. It is difficult for nurses to keep track of all of the IVs. You can remind them simply by asking—without suggesting that the patient is being neglected. mm.)

Surgery

If you’re scheduled for surgery, Hallisy recommends asking the  surgeon:

“How many times have you done this particular surgery? Have you had good outcomes? What rate of complications have you experienced, including infections?”

“Expect specific numbers,” Hallisy counsels, “and not vague generalizations like ‘not many.’”

“Will you be performing my entire surgery? Will you be assisted by any other surgeons, residents, or students? If they’re assisting you, will you be present in the operating room for my entire surgery?”

“Will there be any non-medical personnel in the operating room such as sales representatives?: (Their presence could be a source of infection, or a distraction.” the Guide advises. More importantly, “the presence of a sales rep  also “could mean that the surgeon is using a new piece of equipment or an unfamiliar technique.”   (I, for one, would rather that my surgeon was using an older hip implant that he had implanted 100 times. The “newest” is not always the best.–mm)(

Ask your surgeon how you can contact him or his answering service in case of an emergency following your operation. Ask if he will be staying in town for the first few days after your procedure and how he can be contacted. If another doctor will be on call for him, be sure you have his or her full name and direct contact number. To understand why this is so important, click here for Helen Haskell’s story. mm

Your Medical Record

The Guide is clear: Federal law allows for patients or their agents to view their medical record during a hospitalization. Remember: if you want your advocate to have guaranteed access to your record, be sure he or she is named as your legal agent.

The guide recommends “speaking:to your nurse, the charge nurse, or the nurse manager to work out a ‘plan for access’ to view the record on a regular basis. Be respectful of the work flow of the unit and ask for the most convenient time and location,”  (my emphasis)

What To Look For In Your Medical Record

Are the notes legible? Is any information missing or incorrect? If you find an error or omission, ask for the hospital’s policy on adding your own brief note to the record to clarify.

Do the notes provide enough detail? Be sure the language is not too vague to accurately document the situation.

“Are the providers providing the rationale for their professional judgment? If they note  that a patient is ‘now responding’ or ‘clinically improved,’ they should include the facts that back up their opinions.

“Is the ‘differential diagnosis’ listed? A differential diagnosis contains all of the possibleconditions, with the most likely ones at the top of the list and helps the staff keep a broad focus. Be sure potential diagnoses are eliminated once testing rules them out.

Are the doctors communicating with each other?: “Notes should mention the opinions and recommendations of other providers and clearly indicate that they have consulted  with each other – either verbally or in writing.”

Do any of the doctors disagree with the treatment plan? Reading the notes will tell you which doctors have reservations and allow you to consult with them directly. (my emphasis)

As Hallisey notes in her book: “In one case, an orthopedic surgeon failed, for five days, to diagnose and treat a raging abscess in Kate’s biopsy site. He insisted that the site was not infected—and not the cause of a larger infection that had become life-threatening.”

Only later, when the Hallisy’s read Kate’s records, did they discover that some of the other doctors were as alarmed as they were.

“The other doctors were extremely reticent about coming forward with their own concerns,” Julia explains. “If we had looked at their notes in the chart, we would have known immediately which doctors shared our opinion and we could have pressed them to take a stand.”  (At that point, Halliisy and her husband went to the hospital and insisted on being able to read the medical record in real-time– as it was being written.)

Here Hallisy illustrates why patients and patient advocates must become part of the medical “team.” Together, they can help doctors and nurses who want to “re-form” how hospital deliver care, making sue that it is patient-centered, not hospital-centered,The goal is to protect patients like Kate, making sure that their care is as safe, respectful, and kind as possible.

Very likely, Kate wouldn’t have survived. But her journey through our hospital system did not have to be so hard.

 

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52 Comments on "The Empowered Patient"


Guest

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Vivienne Westwood http://www.tacticaltechnology.co.uk/vivienne-westwood-jewellery.asp

Guest
Happypathy
Mar 26, 2013

Happened across this article and was reminded of why I fell in love with pathology.

Guest
sthorne
Jan 15, 2013

I think the bottom line issue- once again- is that busy professionals in hospitals, myself includuded, do not always do what we know to be right. We do not communicate as clearly and thoroughly as we should. Not all doctors, nurses or other professionals are taught to do this or have the skills naturally, but we all know that time and time again that the cases that are most successful generally involve good communication all around. I think we need to spend a lot more time in the training (and have refreshers) teaching doctors and other professionals HOW to explain things, HOW to engage patients, families and the team, HOW to deliver bad or complicated news. I believe most doctors truly desire to do this well, but don’t always have the tools, modeling or insight into how. In addition, our doctors have to be quite bright and capable of mastering the most difficuly and intricate medical issues. Sometimes that level of educlation, knowledge and base intelligence makes it difficult for them to remember a time when this information was new and difficult to understand even for them. Giving them tools to be able to correctly explain things in laymen’s terms is maybe as useful as learning how to diagnose and treat.

As was noted in the beginning of this post, major changes in the organization and flow of health care facilities need to take place in order to give professionals the time and focus to do what they know is right. I also think, as in other areas, in communication- an ounce of prevention is worth a pound of intervention. Talk, explain, clarify (with the patietnt/family, but also the rest of the team: nurse, social worker, RT, PT/OT, etc) on the front end to avoid much more complex and lengthy (and emotionally charged) discussions later. Again I say- I truly believe this is the intention of most professionals. As professionals, we can always do better and if patients/families help us to remember what we already know-that’s good. As patients, we should also remember the professionals are there to help and want to provide good care- we must give the benefit of the doubt.

Lastly, I can certainly understand how this type of post can make many feel a little defensive and even feel slapped in the face- after all everyone is working so hard to do their best, but I also know that you never know how much is missing in our healthcare system until you have been on the other side. When you or your loved one is ill (or are simply trying to get test results or call back from a doctor’s office), the frustration felt by our patients, their sense of disempowerment at some of the most stressful and important moments in their life can be understood.

Guest
Jan 7, 2013

i read this post and your post great advice for future patients.

Guest
Jan 4, 2013

We have all these people self diagnosing themselves. It’s creating more trouble then helping them sometimes.

Guest
Cassie Stegeman
Dec 30, 2012

Maggie,
I’m so sorry for your lose of your child! Your article has some great advice for future patients and family members. With this information you have shared you given patients and family members the courage to Speak Up and be a patient advocate. Thanks for sharing your story!

Guest
Dec 29, 2012

As health care professionals we should continue to distribute the knowledge on drugs and natural supplements. Looking for coca tea?

http://nutriperu.com/product.php?id_product=1379

Guest
southern doc
Dec 26, 2012

For those who are still confused about “patient empowerment” and “patient-centered care,” here’s the money quote from the article by Dr. Berwick that the OP praises so highly:

‘One e-mail correspondent asked me, “Should patient ‘wants’ override professional judgment about whether an MRI is needed?” My answer is, basically, “Yes.” ‘

See, it really has nothing to do with evidence-based medicine or even shared decision making. The doctor is assigned the role of taking orders at the medical drive through. And, of course, of carrying the malpractice insurance.

Guest
DeterminedMD
Dec 26, 2012

And now time for the after christmas sales, while not the main point of this article, certainly something readers here should read as EMR issues are such a highlight to what PPACA will promote. Oh, by the way, not exactly a bastion source for conservative/Republican commentary, eh?:

http://www.washingtonpost.com/investigations/health-care-sector-vulnerable-to-hackers-researchers-say/2012/12/25/72933598-3e50-11e2-ae43-cf491b837f7b_story.html

Hmm, empower those patients, let them have access to the EMR will be the next post, I bet! Oh, they already probably do per this article!

Guest
MD as HELL
Dec 25, 2012

That is the doctor in the world of preauthorization and managed care.

Do not forget it.

Guest
DeterminedMD
Dec 25, 2012

Amen to above. Except with PPACA, it will be a nameless, faceless, unaccountable bureaucrat who will focus solely on cost.

Hey, over 50% of you as voters said “ok” with this back in November!

Guest
platon20
Dec 24, 2012

“One thing Julia Hallisy learned in 10 years is that you need someone in the medical hierarchy who can countermand an order, insist on a needed test,
–and Listen to the Patient”

You still dont get it. In your ideal world, where there is no hierarchy and all the medical providers are on “equal” footing, there IS NO COUNTERMANDING of orders. Lets remember, the shared decision making and teamwork model of healthcare dictate that ALL team members are created equally and therefore it is counterproductive to patient care for anybody to rule over anybody else. That means the janitor who spends time talking with the patient at the bedside more than the doctor does has an EQUAL say in what is going on. That means the floor nurse, resp tech, and phlebotomist are EQUAL to the attending and the attending is EQUAL to them.

Guest
Dec 24, 2012

Thanks to THCB for fixing the title.

Guest
DeterminedMD
Dec 24, 2012

For the record, I have never said anything negative about a person
who shares a loss here at a thread. That said, I just suggest honestly and directly that when one has a negative experience in a domain, be careful vilifying the entire profession or group because of poor choices or actions by what hopefully is a disdainful few. Especially here on the Internet, I don’t think some people get that realistic appraisal.

Hope the holidays are positive and enriching for all.

And hope the frauds of PPACA are fully exposed and changed to help citizens and allow health care to be practiced to maximize health, not cost nor profit.

Guest
Dec 23, 2012

Thank you to The Health Care Blog staff for changing the title of this post back to the original title used by Maggie Mahar and for being very accommodating and gracious.

Guest
legacyflyer
Dec 24, 2012

Julia,

You and your husband lived through one of the most difficult things that anybody can face – the death of a child. You recovered and came out the other end with the desire to help other people in similar situations – and for that I commend you. Hopefully your work will benefit others.

Some of the reactions to this piece have more to do with the author than the content. And some of us (who followed her prior blog) think that, whether or not she chose the title, it is a title that is revealing of her perspective.

Guest
DeterminedMD
Dec 23, 2012

“The time has come for a truly patient-centered system and I realize that this new paradigm can be threatening to providers.”

Well, good luck expecting people who spend EIGHT or more years learning a profession to be “managed” by others who have no expertise and yet, by the way others above are writing here, should be grateful to this arrangement.

Sorry, I sincerely doubt patients coming in for dental care get away “managing” interventions in your office. Can medical care be better, sure, and can lives be saved and morbidity minimized, no doubt. But, will medicine survive this inane “customer” mentality as being preached here by what I interpret as antiphysician attitudes? Well, let these ancillary care professions do our jobs for a few years, then get back to those of us not stupid enough to agree to these dumbing down intents.

Who out there reading here who is unbiased and objective sees malpractice outcomes lessening with the plans being proposed here?

Guest
Dec 23, 2012

Cue the violins.

Guest
DeterminedMD
Dec 23, 2012

For you, human, hope it’s your theme song, those strings from Psycho in the shower scene!

Guest
Dec 23, 2012

xoxoxo