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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It is allot harder to sell counterfeit items here in the US and get away with it.There are ways that you can be sure that the product is being shipped from the US.If there is no address posted, you can then pick up the phone and give them a call. When the person at the other end picks up the phone just try to have a short conversation .
Vivienne Westwood http://www.tacticaltechnology.co.uk/vivienne-westwood-jewellery.asp
Happened across this article and was reminded of why I fell in love with pathology.
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.
i read this post and your post great advice for future patients.
We have all these people self diagnosing themselves. It’s creating more trouble then helping them sometimes.
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!
Thanks for sharing your comment! I agree with your post. It’s the patients right to ask questions, ask for a second opinion, or even question medical professions. As a nurse, I have seen mistakes made and some close calls. Patients are in charge of there own health care and most importantly they are there own advocate. I much rather a patient or a family member question me rather than sitting back and potential cause harm to a patient. We are all human and mistakes do happen but as medical professions we need to educate patients and families to speak up if something doesn’t seem right!
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
“As usual, people like you . . . ”
What a bigoted, hateful phrase. The true spirit of intolerance.
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.
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!
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!
That is the doctor in the world of preauthorization and managed care.
Do not forget it.
“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.
I like the way you think, Southern Doc.
MM,
I appreciate the detail in your responses, but I do not think that you address the fundamental concerns I brought up. I try to be as concise as possible:
(1) you talk a lot about EBM, and yet you enthusiastically recommend an intervention (patient empowerment/Julia’s advice) of entirely unproven benefit. No one can/will do a randomized study of empowerment/advocates, but an observational study could surprise (similar to the surprises seen when patient satisfaction was examined
http://archinte.jamanetwork.com/article.aspx?articleid=1108766
The assertion of astute parents that they felt their loved one received better care may be true, but is by itself not convincing. Dr. Berwick’s extraordinary claim of preventing a serious mistake every day is not a poster case for empowerment as he is a (presumably outstanding) physician and not just any advocate (BTW: if even elite institutions failed that badly, we can just as well give up for the rest of the nation right away, because elite institutions outdo most community hospitals in terms of resources, extramonetary motivation and intellectual power)
(2) the underlying assumption is that most if not all patients want to be empowered is simply not the reality. My last patient centered conversation 4 days ago, with a male patient in his 30s, affluent and well educated, about management options for a condition that may turn out to be a chronic one ended with the question: “what would you do, doc?”. This was after I gave a rundown of all the options – a lot of patients do not even want to let me conclude a summary of the reasonable options.
(3) we discussed the IOM numbers multple times on this blog and they are far from being generally accepted (I find your added emotional flavor of the “9/11 holocaust” not at all helpful). A lot of physician- and non physician activists promote these numbers; while many are truly concerned about reducing medical errors (so am I), others may have different agendas such as commercial interests, career enhancement. In this context, let me mention that Dr. Meier ( I don’t happen to know her, she probably is an excellent physician and researcher) whose views you, as a journalist, seem to endorse without any reservations, may have an agenda as well – the agenda of promoting her field/specialty and research interest. Her view that palliative care should be extended to curable conditions or even any condition is likely far from the mainstream. That does not mean she is wrong … but her evidence for the benefits of palliative care (in one of her reviews that I just read) rest completely on nonrandmonized studies studies in terminal or at least fatal conditions (with life expectancies of up to 5 years), with the control group being standard treatment (which creates problems with placebo effects and typical nonspecific benefits from any additional intervention). The assertion that PC should be done early or in any medical condition is even less convincing. I say that mostly for completeness’ sake (and since you so aggressively assert that you are a promoter of EBM and those who disagree apparently are not) , but I will discuss with our palliative care team to what extent they feel they can help patients with life limiting but not terminal conditions (in any case, Julia’s initial recommendation – “Do you have a palliative care specialist who could talk to my husband about his pain? The medication he’s taking isn’t controlling it, and I’m worried.” – is flawed, as palliative care consultation is NOT the best first step for control of pain or other symptoms in most situations, and platons initial objection above is correct)
(4) a lot (definitely not all, I have seen the opposite) of patient involvement/empowerment actually veers towards overtreatment. And that’s why I think the notion that patient empowerment is a major remedy or even panacea for our grave health care woes is quite misguided. What we need to do is to remove financial incentives for overtreatment (i.e. not overpaying certain treatments), to educate the population (and the media and many physicians) that more HC services is not better HC, and to make sure that everyone has reasonable coverage in order to avoid undertreatment (and yes, we also need to improve on hospital safety, esp the low hanging fruit like hand hygiene, but enormous progress has been made already). Everyone deserves reasonable medical care, not just patients with the benefit of insurance as well as smart and dedicated advocates.
Julia,
I think a lot if not most what you recommend makes sense (and has been done more and more over the last near decade of my practice, and presumably it has been done increasingly for decades prior) , but some suggestions may end up not being productive, depending who is picking up which suggestion in what context.
I have also some fundamental hesitations/concerns that I will again try to discuss with MM in the thread above.
Thanks to THCB for fixing the title.
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.
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.
xoxoxo
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.
For you, human, hope it’s your theme song, those strings from Psycho in the shower scene!
Cue the violins.
“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?
The post written by Maggie Mahar is about my work in patient safety and engagement over the last fifteen years. It is very unfortunate the The Health Care Blog chose to change the title of the post to something that I can only assume they found more sensationalist. I feel that the new title is confrontational and completely counter-productive to the work I do.
I am a front-lines health care provider myself with a busy dental practice. As such, my training afforded me a much greater understanding of the health care system, medical terminology, and the science behind my daughter’s illness and life-threatening infection. Even with my years of education, I struggled at the bedside to understand what was happening, to get the help we needed, to work my way up the hierarchy, to ask the right questions, and so many other challenges. I spent a decade during my daughter’s battle with cancer speaking to other parents who struggled with the same issues but had no background to assist them in becoming true members of the health care team. They wanted to know how I learned the things I knew and they wanted me to share my knowledge with them. It was also my late daughter’s wish that other families not have to learn things the hard way. It has been both my duty and my privilege to share what we learned so that others could have better, and safer, experiences in the medical system.
We have changed the rules of the game. We had a paternalistic model in which we told patients “All you have to do is get better. Let us handle the rest.” Patients were very skilled at this approach and the entire burden was placed on the system and on providers. After the 1999 Institute of Medicine report it became increasingly impossible to ignore the avoidable errors, the infections, the harm from miscommunication, and the need to involve patients and families in their care. In recent years I have been pleased to see new health reform efforts include goals such as patient-centered care and shared decision-making – approaches that patient advocates have supported and worked on for decades.
We now tell patients and families that they are the center of the health care team. “Nothing About Me Without Me”- “Ask Me 3”- “Speak Up” – campaigns designed to alert patient to their new role and level of responsibility. I have always told patients and families that they have responsibilities, but I also provide the information and tools they need to take the first steps into a patient-centered system. You will not be a successful member of a team if you don’t know the rules of the game, if you don’t practice as a group, or if you lack the confidence to ask a simple question or to make a suggestion.
My work allows patients and their families to interact with their providers in an informed, organized, and efficient manner. The information I provide is a starting point for meaningful interactions, it certainly does not take the place of the doctor-patient encounter or relationship. No nurse should take offense that a nurse mentioned above him or her on the hierarchy chart may “know more” and no doctor needs to point out triumphantly that the Chief Resident may not know everything about a patient. The fact is that most patients have no idea that there is anyone else they can ask for an opinion, or ask for help. Hospitals have many different staff members to assist patients, but patients and family members are often unaware of the resources available to them. A patient or family member who feels that they suffered due to a “failure to rescue” situation often wishes that they had known to move up the nursing hierarchy and they live for the rest of their life with the “What if I had known to ask for the experience and expertise of the Chief Resident or Attending Physician?” Looking at it from the patient’s point of view will often give you a completely different perspective. It’s not about who is above you on a hierarchy chart or if the Chief Resident knows more about the patient than you do – it is about who is best suited to help that one particular patient, at that exact time, with that specific issue or problem.
As a provider myself, I see the barriers people face to speak up, ask questions, get second opinions, etc. These barriers are holding people back from truly participating in their care – and they are often relatively easy to address. A small amount of knowledge can go a long way. I tell patients all the time that they don’t need to know everything in our guide – they need to refer to it when a situation comes up that they instinctively sense requires more information or guidance.
The time has come for a truly patient-centered system and I realize that this new paradigm can be threatening to providers. I have ongoing discussions with my own colleagues about the future of our profession and of health care as a whole. While it can feel threatening and disconcerting because so much of it represents the unknown at this point, progress always brings with it great challenges. I remain convinced, more than ever, that no one should struggle in the health care system the way that my family did. The suggestions I provide are based on a decade of real-life experience at the bedside dealing with several hospitals and hundreds of providers. When we worked with our providers to examine what had gone wrong and included them in our search for solutions, we always found a better way.
The Empowered Patient Hospital Guide and all the work of The Empowered Patient Coalition is about finding new ways to deal with the health care struggles that are demoralizing staff, harming patients, leading to billions of dollars in waste and over treatment, and weakening the trust between patients and providers. Informed, engaged, and empowered patients work with their providers, they have a baseline of knowledge which allows them to participate, they take responsibility for their choices, they are less likely to blame others, they ask intelligent questions and they make good use of their time with providers because they are focused and organized. The list could go on and on.
Patient engagement and empowerment is here to stay. Patients will not be satisfied to go back to sitting passively by hoping for the best. In increasing numbers, they want to have a say in their medical treatment and realize that with rights come responsibilities. As providers, we have a moral and ethical duty to help health care transition into this new and socially just era.
There are studies of “slips of the tongue” that suggest that what was not meant to be said can be very revealing.
In this case, I think the title is revealing – of course you and I have a history together so ….
Rbaer–
You write: “I would say that the vast majority of the medical community INCLUDING most palliative care teams would not use palliative care for pain management in an inpatient who expects cure or significant improvement (of course it is possible that there is some regional and institutional variation)”
Rbaer, evidence-based medicine calls for trying to move away from regional and institutional variation (a group of doctors doing what they have always done) to pay more attention to what the best medical research. available says is Best for the Patient.
Currently palliative care is recommended for patients who are not expected to die at places like the Mayo Clinic, Dartmouth-Hitchcock, John Hopkins and every other institution that focuses on “evidence-based medicine” The vast majority of U.S. hospitals now have palliative care teams who care for patients who are NOT dying. (Hospice care is for patients who are quite certainly dying.)
Palliative care patients continue to receive treatments that may cure them–as well as palliative care
Nevertheless palliative care specialists report that some older doctors resist palliative care–for the same reasons that they don’t like the idea of “hospitallist,”
“nurse practitioners,” the PPACA, “patient-centered medicine, ” “shared decision-making” and some of the other newer developments in medicine that have been mentioned on this thread. They are threatened by change, and want to do things the way have always done them. It is hard to admit that doing things the way they have always done them may not have been best for patients. Through no fault of their own, they were wrong. Now, as we learn more, we must change how medicine is practiced
This, of course is not true of all older doctors.
I think of Don Berwick, Geroge Lundberg, Nortin Hadler, older doctors involved in the Dartmouth research who are in the forefront of 21st century medicine.
Dr. Diane Meier (who won the MacAruthur Genius Aware for her work in palliative care) stresses
that palliative care is for people who are NOT dying–for people who are expected to recover.
Meier writes: “Often, hospice and palliative care are confused. They are alike in that both hospice and palliative care emphasize relieving suffering and improving the quality of the patient’s life. But while hospice care is designed for those who are clearly dying, palliative care provides comfort and pain relief for anyone who is seriously ill, regardless of their prognosis—whether a cancer patient who hopes to go into remission, or a patient who is expected to live for years with a chronic disease such as heart failure or Alzheimer’s.
Palliative care rejects the false dichotomy between “comfort” and “cure.” The patient continues to receive treatment that might cure—or at least extend life—while also benefiting from the expert pain management that palliative care specialists offer.”
Above is from Palliative Care: Transforming the Care of Serious Illness (Jossey-Bass, 2010), an outstanding collection of essays edited by Diane E. Meier, Stephen L. Isaacs and Robert G. Hughes. I
Then there is this from the National Cancer Institute:
“Palliative care is comfort care given to a patient who has a serious OR life-threatening disease, from the time of diagnosis and throughout the course of illness” (He may receive palliative care for months or even years.)
A pain specialist is trained to deal with pain– period. He may be a “back pain specialist.” He may inject drugs to block pain. Often he is not dealing with a patient who is “seriously ill”; he is dealing with a patient who suffers from localized pain.
Pain specialists are not trained to deal with patients suffering from all of the physical and psychological symptoms suffered by people who are seriously ill and need to deal with a) depression b) pressure from family (or oncologists, surgeons etc.) that they should “fight to the end” ,c) their own fear of pain . .
A palliative care specialist is trained not just to block pain, but to calibrate the amount of pain medication needed to keep a patient comfortable but as alert– as she wants to be. A palliative care specialist is trained to draw out the patient so that he can express his priorities in terms of how much pain he is or isn’t willing to endure (This is part of “shared decision-making.)
For some patients being perfectly clear-headed is important; others might prefer to be more heavily medicated as long as they can still recognize and talk to loved ones–at least for short periods of time.
A Palliative care specialist don’t tell the patient: “This is what we’re going to do.”
They ask the patient questions . What are her greatest fears? Her greatest hopes? (Some people are more afraid of pain; others are more afraid of dying.) Some want to be home. Others want to fight to the end, in the ICU if necessary, surrounded by specialists and all the medical technology has to offer.
Regarding Otis Brawley– I’ve interviewed him and read his work. I’m familiar with his views (and agree with him) .
He believes in “patient-centered medicine” In fact last February he
spoke at the “Patient-Centered Medicine Outcomes Research Institute Conference”
This review of his book in Health Affairs makes it clear that the problem is Not
sharing decision making with patients, or “patient centered care.”
The
problem is that patients are over-treated by money-driven medicine:
“Bawley draws on his experience at Grady Memorial Hospital in Atlanta to write about patients transferred to him who were being treated inappropriately by well-compensated physicians who dealt mainly with the insured.”
(Brawley also explains that uninsured and low-income patients are undertreated. It does matter whether they or their relatives are asking for more treatment. If there’s no money to be made, they don’t get it.) .
Of course desperate patients accept and even ask for more treatments (often over–treatment,) but it is the doctor, and the hospital not the patient who decides what will be done: The reviewer writes:
“Equally troubling are the examples Brawley gives that come from the ranks of patients who have insurance and the ability to pay. Patients facing terminal illness often will do anything to survive, and our health care system is wired to tap into this desperation for the sake of profit”
Brawley also has spoken out against PSA testing and publicly has said that mammograms lead to false positives and treatment of miniscule tumors that don’t need treatment.
On patient-centered care: For the best description of patient-centered care see Dr. Don Berwick’s essay
http://content.healthaffairs.org/content/28/4/w555.full
Finally on medical errors “Overtreatment IS a preventable medical error, driven, acccording to Brawly, by greed.
As for the notion that medical errors are not at the top health reformer’s lists–just Goggle the comparisons between “World Trade Center” bombing and
“Medical errors” in our nation’s hospitals The number of people who die
in our hospitals as a result of preventable errors is often compared to the
Sept. 11 Holocaust– and with good reason.
Read the PPACA and see what it says about medical errors.,
Or, just read Dr. Brigg’s comment near the top of this thread.
Lori–
Yes, some experienced nurses do know more than some doctors.
But if you read Hallllsy book or look at the guide, you’ll find that she is talking about how to find someone who can stop an inexperienced (or exhausted)
resident from doing harm to the patient– some one who has the authority to
tell him– wait a minute.–
This is what the head of the infectious disease department had to do when my daughter was at a major Manhattan hospital and developed an infection accompanied by 103 fever following child-birth.
For four days, the fever continued (interspersed up with chills and uncontrollable shaking.) The antibiotics weren’t working. She was in an extreme amount of pain. The resident didn’t know what he was doing, so he just ignored her. The nurses were very sympathetic, but
said there was nothing they could do. A doctor (no one seemed to know who had ordered the antibiotic.
Finally, her father, who is an attorney asked the nurses to contact the
infectious disease dept. The head of infectious disease came down and looked at some tests that had been run on her. (Her Ob-gyn, who is in private practice, had ordered them after my daughters nurse-midwives (who work with him) reported what was happening. (Apparently no one at the hospital had yet looked at the tests. (Clearly she needed a hospiitalist to co-ordinate her care;.
It turns out she had been mis-diagnosed by two doctors who thought she had
a urinary tract infection. It was a very bad kidney infection.
She was being given the wrong drugs. The head of infectious diseases acknowledged that if someone hadn’t caught this–and soon– she would
have gone “septic.”
An experienced nurse could not have countermanded the doctors’ orders.
And how do you ask for an “experienced nurse” (they don’t wear
identifying labels).,
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.
She and her husband were scared. And they were ignored. The doctors who came in and out of her room didn’t talk to them.
When the head of Infections Diseases showed up, they paid attention. (The nurses didn’t feel they could go over the doctors’ heads. But when an attorney showed up saying he was her father, they knew they could call the Infectious Disease Dept. and say– “There’s a lawyer down here who says he’s her father. It took less than 15 minutes for things to start happening. (A friend who is a doctor told me to call her father (my ex) who is a lawyer. My friend said “it sounds like she’s going septic.,
And this was in one of NYC’s finest academic medical centers. These things can happen anywhere– hospitals are busy places, people fall through the slats; the systems are broken; the resident wasn’t being properly supervised.
The vast majority of medical professionals are doing the best they can– but
working conditions in many of our hospitals are terrible. This makes them
dangerous places.
It is nothing less than disingenuous at least, dishonest at best, to make these claims about RN roles. Really, do any of you claiming nursing is equal or greater than the training and responsibilities of doctors apply this demeaning attitude to other professions? Paralegals should be lawyers, Sous chefs run kitchens, what about dental hygienists are equals to dentists?
Oh, I get it, Washington hasn’t found interest to go after those professions.
Yet.
For me, just validates my opinion of the philosophy by the author. If physicians don’t echo an opinion, then they are just irrelevant, or better yet, just out to harm patients. Remember, there is a partisan agenda here, with them or against them. God forbid more doctors than not do not embrace the customer is right mentality that is the backbone of PPACA.
Oh, I’m sorry, that is the backup to the buck comes first mentality that drives political agenda. Let’s be clear, the doctor’s concerns to the process aren’t last.
Doctor’s concerns are irrelevant. Look forward to all those specialty nurse leaders running health care by 2016. Will enjoy their malpractice coverage rates equalling ours as well by then.
After some more reading, I have to briefly come back to the “palliative care” issue. While “palliative and hospice care” are one board certification, some do use the term “palliative care” for the management of chronic nonfatal conditions (and even fewer for the treatment of curable conditions), with special consideration of psychologic and spiritual factors. I would say that the vast majority of the medical community INCLUDING most palliative care teams would not use palliative care for pain management in an inpatient who expects cure or significant improvement (of course it is possible that there is some regional and institutional variation).
Maggie,
I am sorry that you fall into a confrontational pattern (that the THCB triggered by – by your own admission inappropriately – headlining your post.
Platon brings up mostly valid points (IMHO in a somewhat needlessly adversarial tone). Palliative care and pain medicine are different specialties – I do not think it is the central issue here and there is not much helped by arguing about this point.
He (Platon) “hides” behind a pseudonym like most physicians including myself do on the THCB, for reasons that you probably know but that I would be happy to explain if needed. To comment on someone’s anonymity on an internet forum is not a sign of particularly advanced discourse.
Also, I note that an artificial polarization is kept up by several posters lumping all the posts by various assumed HC providers into one camp. I think I wrote a differenciated post, and even MD as hell “totally” agrees.
I want to make clear – again – that a lot of patient involvement and many of the above suggestions do make sense, if used appropriately and with consideration. The huge problem that barely anyone wants to talk about is that patient (and family ) participation are always (or even just mostly) beneficial. This is a completely unfunded assumption. Please read Dr. Brawley’s book “How we do harm” to read 2 long and IMHO representative anecdotes of patient/family centeredness resulting in net harm.
I would argue that lack of patient involvement and medical errors are hardly on top of the list of pressing flaws of the US health care system – I would emphasize (with Dr. Brawley and, actually, Ithought, MM) that profit centeredness resulting in overtreatment of the insured and undertreatment of the underinsured are the main issues.