A Change of the Medical System to Patient-Centered Consumerism: Is that What You Want?
Here is what Donald M. Berwick, writing in Health Affairs May 2012 suggests a the way the medical system can really become "patient-centered" and not present only partial changes in that direction but, in my words, "not half cocked but going the whole way". So now look at this list of changes and see if this is how you would want your doctor, nurse, hospital and the whole system to behave.
(1) Hospitals would have no restrictions on visiting—no restrictions of place or time or person, except restrictions chosen by and under the control of each individual patient. (2) Patients would determine what food they eat and what clothes they wear in hospitals (to the extent that health status allows). (3) Patients and family members would participate in rounds. (4) Patients and families would participate in the design of health care processes and services. (5) Medical records would belong to patients. Clinicians, rather than patients, would need to have permission to gain access to them. (6) Shared decision-making technologies would be used universally. (7) Operating room schedules would conform to ideal queuing theory designs aimed at minimizing waiting time, rather than to the convenience of clinicians. (8) Patients physically capable of self-care would, in all situations, have the option to do it.
This might be just the beginning of suggested changes just as sweeping as the ones that Berwick suggests. Read the entire article and then return and tell us what changes would you as a patient and a consumer would additionally want to see? Also, do you have any criticism of the changes noted above or by my visitors? ..Maurice.
posted by Maurice Bernstein, M.D. @ 3:37:00 PM
24 comments
24 Comments:
Dr. B,
I read the entire article and find it very interesting, and I agree with the vast majority of what Dr. Berwick had to say.
I think the following quote from the 2nd to last paragraph says it all:
"That’s what scares me: to be made helpless before my time, to be made ignorant when I want to know, to be made to sit when I wish to stand, to be alone when I need to hold my wife’s hand, to eat what I do not wish to eat, to be named what I do not wish to be named, to be told when I wish to be asked, to be awoken when I wish to sleep."
OK on to the list of changes:
#1 - I agree in principal.
#2- Absolutely!
#3 - I assume this means that the patient & family (with patient's consent) would be able to directly interact instead of being treated as an object and referred to in the 3rd person.
#4 - I thought the already did to some extent - my HMO does this. I guess that's the exception.
#5 - Agree completely. Further, providers use of those records should be restricted to care of the patient purposes only - any other use must require patient's written permission.
#6 - Agree.
#7 - Agree
#8 - Agree
And, Hexanchus, can you add some more changes in a "patient-centered" direction? ..Maurice.
Maurice
None of these ideas are feasible,realistic and
are basically bad ideas.
PT
PT, explain.
Also tell us what suggestions in place of those suggested by Berwick you might give within the context of patient-centered (not necessarily gender-centered) behavior. ..Maurice.
Dr. Berwick presents some well-considered ideas, and in the perfect world they seem, well, perfect. A bit lofty, but a large part of me agrees with his assertion that we (as health care professionals) should behave as guests in patients' lives.
The rest of me - and this includes my roles as a hospital nurse, the spouse of a chronically ill spouse, and a healthcare consumer - would like to see the 'nuts and bolts' of how this would look, not only to hospitals, but to 'payers', before I can make heads or tails of whether the added cost will be something I can afford.
Hospitals are already throwing a great deal of money at attempts to provide "patient-centered care", and in my experience, they are hindered left and right in many ways, including regulatory, that will take more than a 'revolution' to fix.
For now, such an ideal, while it espouses the general idea of PPACA, seems financially too lofty to consider without major changes in the way health care is paid for in this country.
Granted, this is a bioethical discussion, but these days, in health care, the 'bottom line' can not be ignored.
rapnzl rn, you know, I think that doctors and others in the medical profession really don't realize that they literally are "guests in patient's lives" and should always behave as such. I think that, in addition, all other components of the medical system including hospitals and even insurance companies and the government should take that same perspective. The attitude of being "invited" by the patient should redirect the medical profession, insurance companies and government from a paternalistic "We know what is best and this is how we shall proceed" to a patient autonomous "You tell us how we can help you." After all, even in the United States, much of the costs of medical care is underwritten by the citizens and as hosts of the invited medical guests they deserve the courtesy which should be directed to any host, particularly one who is ill. ..Maurice.
Oh my, I could rant on about that article. Completely in support.
It is often a terrifying prospect to be hospitalized - because you lose control of your own self. You are now under control of strangers - and some are better and nicer than others.
Re. the cost of implementing such changes - I don't think the majority of that would cost anything. It's mostly a change of medical providers attitude - from "WE are in control" to "YOU are in control.
I remember a nurse in the ER once saying to me "We are all control freaks". Well she actually nice, but still it shows an attitude.
I think it will be difficult for even caring and kind medical professionals to adjust their attitudes - they've had them a long time. Maurice, you say medical professionals should move away from the paternalistic. Yet, in other discussions you consider not telling patients about side effects due to the nocebo effect. You don't want them to hear individual specialist opinions because they can't understand them. To me, all of that is paternalistic - controlling what information about themself a patient is allowed to have. Not meaning to be critical - but I suspect looking at patients as dependent, and to be taken care of, is something that's been ingrained for a long time. By the way, I believe that you are a kind and caring physician.
Some professionals may just have a hard time changing. Many others, I believe, really don't want to. They like having the control.
Mayo Clinic btw is one of the least patient centered organizations I have ever encountered - I spent weeks there with a patient. They are probably the best in the world at running tests, but I would not go back. A lot of unhappy patients there, for similar reasons. We all would chat at the hotel and in waiting rooms. Mayo is like being cought up in a machine - an incredible effecient machine with amazing technology. But it's their way, or the highway. 100%. What the patient wants doesen't matter in the slightest - not only is the patient not consulted, they're sometimes not even informed. And some of staff are quite nasty about it if you dare to question anything. The patient said he felt like a sheep on a treadmill.
TAM
For #5, patients own the records, I could not agree more. I recently needed a blood test. I went to one laboratory where they were just itching to get me processed. I held back and asked "If you perform the test, will you send me a copy of the results?" Their reply was "No, you will have to get the results from your doctor!" I walked out and across the street to another laboratory where they were more than happy to send me my results. It turns out that I received the results from my doctor the next day because she sent them to me electronically. The lab had to mail me a copy. The point is that it was MY blood. The first lab had no right to withhold results from a patient.
Jay
Maurice
First and foremost stop discriminating against male
patients before any more changes are made. This needs to happen FIRST!
1) visiting restrictions...really. C'mon, other patients in
semi-private rooms need to Sleep,otherwise family will
be coming in all night.
2) Choice in food, really. With a third of the US population approaching gross obesity, let them order
pizza while in the hospital,they already do anyway.
3) families participate in rounding. What hospitalists
have time for that. Them and the attendings would never get to go home.
4) patients and families design health care processes.
They already have, that's why 95 percent of all nurses are female.
5) patients already have access to their medical records
as it stands. What good would it do to let them take it
home with them. They still can't recite what surgeries they have had in the last 5 years let alone what diabetic
Medicines they are taking. People are soo stupid!
6) pointless
7) pointless
8) patients used to be able to do this until Mexican
pharmacies started asking for prescriptions, thanks
to the American big pharma.
PT
To PT,
Hospitals are moving away from semi-provate rooms to private rooms. Sure, if it's a semi-private room, people need to sleep. But in a private room, why not let people stay?
In fact, at my elderly friend's last hospitalization, they did let me spend whatever time we wanted with her, and we were both very grateful to have that last time.
Food - I hope no one expects a 4 star restaurant. But why place someone, against their will, on for example a diebetic diet? They won't eat that way once they get home. Why can't an adult choose from whatever choices the hospital offers. Sure, a doctor could recommend it, but why force a particular diet on a person? Only other place I know that happens to an adult is in prison.
Patients can take copies of records home now. The point is, they should be entitled to, immediately, and also to limit what medical providers have permission to look at them.
We are not all stupid. Just like physicians, some patients are smarter than others.
Haven't had time to look at all the points yet.
You worry me a bit if you are a medical provider.
TAM
Frankly, I thought some of the patient-centered changes suggested by Berwick were weak and a bit "silly". I think there could have been, even as theoretical suggestions, more substantial examples. After watching for years the responses to my blog thread on Patient Modesty I was surprised not to find a recommendation for patient gender selection of their healthcare provider to be followed by the medical system. Perhaps, my visitors here can suggest also some other and better changes which will significantly contribute to patient-centered medicine. ..Maurice.
Tam
Ever hear of the term medical liability? It is
essentially the driving force behind medical institutions. I can firsthand attest that most diabetics don't follow medical advice. They don't take their medicines regularly,and they don't follow a directed diet.
Now diabetic patients parallel alcoholics and
drug abusers. At some hospitals I have worked at, our
inpatients account for 80 percent of these kinds of
patients. Most are non compliant and are on welfare
insurance or no insurance at all. They are demanding,
and are only there for their drugs,obviously Tam, you
don't work in healthcare.
PT
Of course many diabetics don't follow medical advice. I know that. But the point is, they are adults, and that is their choice. Good choice or bad choice, they get to choose. Until they're in the hospital, and someone enforces a particular diet upon them.
They might not even be diabetic, and have a particular diet forced upon them. The person I was referring to was not, she had a temporary problem with blood sugar, and was completely compliant with various medications. The point was, no one recommended a diet, no one discussed a diet with her, she just tried to order dinner and discovered she had been forced onto a particular diet. You may think that is ok - I do not.
And sure, there are difficult patients. And I do have experience with drug addicts and alcholics.
However, that really has not much to do with the topic under discussion.
Unless, of course, you are pointing out that these are lesser people, and should not have rights.
I was going to work in healthcare, decided against it.
Some healthcare providers become too jaded, and do not respect people any more.
TAM
It is estimated that by 2020 one-third of all hospitals will
close. Many people feel somehow that healthcare should be free. I have never been able to understand that concept. It boils down to responsibility, people would rather pay relentlessly for tattoos and a ring on every finger than pay for basic health coverage.
These same people whine and moan when they show up in the ER at 3am with a toothache and expect the ER to do a tooth extraction and/or a root canal. They arrive in the ER on a Sunday with their entire family in tow expecting a five course meal to be served to their entire family for free while they throw a tantrum
demanding a hemorrhoidectomy be done right then,right
now.
This is not Burger King and no you can't have it the
way you want it. I am a fan of patient-centered care but
to the extent of what is within reason. Patient-centered
care would be expensive and is just another extension
of entitlement mentality. Hospitals are NOT resorts!
PT
PT, none of what you described above is what I would call patient-centered care - it is just a bunch of entitled obnoxious people. Completely separate, I think. It seems, to me, that you are missing the point from the reasonable patient's point of view.
Many things that are patient-centered care wouldn't cost a dime.
Let the husband stay with his wife when he wants - free.
When the patient calls to order a meal, say "the doctor recommended xxxx diet" - will you agree to that? Or have the doctor ask the patient first - free.
The patient owns their medical records - practically free.
I personally am not looking for a resort, I don't care if the food is crap, or the decor isn't pretty. I don't care (unless I'm screaming in pain) if I wait in the ER.
I do care if I still "own" my own body and make my own choices, just like I would in the rest of my life.
TAM
Tam
Appreciate that most ER patients are entitled
obnoxious people and on average 6 out of those 8
people don't have health insurance. The 7th patient
may have welfare insurance, most could have waited
to be seen by their family physician, oh but wait, they
don't have a family physician. That would cost money,
a co-pay, rather they can go to the ER for free,in their
mind.
I think you've missed the point of Berwick's thoughts on patient-centered care, it's all just an
illusion,an exercise. You see, a patient already has
access to their medical records. You can go back to
the hospital and visit your medical records department,
whereby they will gladly make copies of all your records.
If you have had any diagnostic imaging tests, such
as an ultrasound,nuclear medicine,x-rays,MRI or cat
scan they will print them on a disc at no charge and
give them to you. This was all passed on Pres Obama's
health care law! Every hospital has waiting rooms for
patients families and yes they even allow them to pull
up a cot and sleep in the same room with the patient
overnight.
At most hospitals not every room is private, but
leave it to knucklehead visitors to show up at 3am
and wake up the poor soul trying to rest in the next bed,
amazing! You can eat anything you want, the physician
documented a specific diet for your mom who presented
to the ER just two days ago with DKA, that's diabetic
ketoacidosis. He assumed that the family wanted that,
after all that is why you brought her there in the first
place,right,for her to get better. He didn't think you would immediately feed her 15 snickers bars and a six
pack of Dr pepper. The next time you visit a hospital
you tell them you want patient centered care. I think
you will find that most of the time they already do
that.
PT
PT, no, they don't mostly provide patient centered care. Some things, some time.
There are idiots everywhere, they can't be the reason to not be "nice" to the people who weren't. From what time I've spent sitting in ERs, I'd question the 6 out of 8. But I'm sure there are quite a few, and it probably varies by ER. I've also found the most jaded staff in the ERs, probably correlates.
Yes, patients have access to their records by HIPAA law (which came far before Obama). Eventually. Sometimes they have to fight for them. You may be charged a significant fee. Yes, you can get a copy, eventually. You want to see what your labs were this morning? Maybe they will show you, maybe they will refuse.
Secondly, you cannot really control access to your own records. If one doctor in a practice sees you, every other doctor in that practice can see your records. Not a problem, just a few docs? But what if it's a doctor in a huge hospital system - now 1000s of people can, at least theoretically, access your records. You cannot restrict that, if you want to. So the patient does NOT own and control their records.
Yes, some hospitals will let a visitor stay overnight. Actually, I have not had an issue with hospitals enforcing visiting hours. But, sometimes in the ER or for tests, they refuse to let someone be there, even if they hold the healthcare POA, and the patient cannot decide for themself. Had that happen to a family member, they did some things against his will, and since I wasn't allowed to be there, I couldn't prevent it. For no good reason, just control. Neither he nor I would have consented, if we were given a choice. It was not medically necessary. Probably not legal, but that didn't stop them.
If with the DKA, you're talking about the case I was - that wasn't it. It wasn't my mom, she was in the hospital for another reason, wasn't diabetic, just had a slightly high blood sugar from medications (steroids). Not so much objecting to the diet, as the fact that it wasn't discussed, she didn't consent to it - it was forced upon her - just got a surprise when she called to order her meals. And no, she couldn't eat anything she wanted - the kitchen refused to send anything not on the diet.
I don't know who could eat 15 snickers bars without puking.
Sometimes, some hospitals do a lot towards patient-centered care. But they feel like they're doing a favor, they not required to. And when some of them don't feel like it, they don't do it.
Not everyone is an idiot.
TAM
As I said, take all this up with your facility.
PT
I think the point of this blog is discussion, and about perhaps changing the whole culture. Not about me speaking privately to someone at one facility.
When I have had an issue, I have discussed it with the physician and/or facility involved.
TAM
There'll never be such thing as "patient centered-care" if the patient is not in control of elementary decisions (whether to have surgery or not, etc) that might even affect his/her own fate.
You should take a look at Planetree, an organization started in 1978 with the goal of making medical care "patient-centered" which appears to have been following and promoting ideas similar to Berwick. ..Maurice.
I have encouraged changes like this in care provider behavior, and enacted them in a small, faith based hospital. Hospital size is key (smaller is better in many ways) Examples: don't awaken people for vital signs if sleeping comfortably, allow people to wear long underwear or other comfies if they are cold, don't put people on low salt diets if the goal for care is comfort, encourage people to be out of bed, come out into the hallways unless on isolation, and remain active, encourage patients to participate in their care plan, share what's on computer screens when administering meds, turn off IV's which cause excess urination overnights, have staff and volunteers go on walks with patients when they are restless or frustrated, frequently reorient and remind patients of where they are, what circumstances they are in and what choices they have, provide unconditional love and kindness, including hugs, offer prayer, provide a bed in the room for family to stay over, encourage pet visits if lonely and the pet is well behaved, provide home visits, go to funerals, speak up on our patient's behalf, be guided always by what's right and caring for the patient and the family
I’m a patient from Australia, with complex chronic conditions from high doses of radiation for bone cancer as a child. I learned very early to not blindly follow the advice given by the ‘best’ doctors if it did not fit in my paradigm of quality of life. This saved me from hindquarter amputation.
I come across the attitudes voiced by PT all the time. I am not stupid. But I am routinely criticised for my intelligence; my capacity to understand and use medical terminology (or find out), my ability to read peer reviewed articles, my capacity to think critically with depth and breadth. The only way I am given ‘permission’ to have and use these abilities is when I tell them I have an animal science degree. Then I’m ‘allowed’ to be intelligent and use correct terminology. But even the basic stuff that any person can manage is ignored. After 30+ years, I know my veins are hopeless and beg doctors to use pediatric needles to have success. I am ignored. I beg for IV’s to be slowed so the vein will not blow, and I am ignored – again and again and again. And always I am the one that pays, with pain and distress and more invasive procedures.
I am labeled ‘difficult’ and ‘non-compliant’ if I do not blindly follow advice, even though I have MANY instances when being non-compliant has proven to be in my best interests. It is completely illogical for me to NOT question the relevance of treatment and weigh up the outcomes based on my empirical observations. Yet most doctors refuse to accept this basic logic. THAT is illogical. ‘patients rights’ is a lip-service term
I’ve made friends with people in the medical system – surgeons, nurses and other para-medicals. And I have found one core thing: they don’t trust each other, even at peer level. I see that many people within the medical system are, as stated in a prior post ‘control freaks’, and have extremely limited ability to self-reflect and alter their behaviours, even ones that are patently causing problems. They employ the insanity principle – doing the same thing over and over and expecting different results. This behaviour is directly against what a competent scientist should employ.
the rest of my post didn't go on...either I wrote too much or I didn't cut and past correctly. Apologies.
I think points 1-3 are completely unworkable in a system that is already under huge stress. Also not economically viable.
Point 4 is great, and I'd love to be involved with this design work.
In Oz patients don't own their medical records, hospitals do. I vehemently disagree with this. I think both doctors and patients should have equal access to the records.
Points 6 & 7 I can't comment on as I don't have enough experience with them.
Point 8 -YES! Involve me in my decision and let me take EQUAL responsibility. Then if something doesn't work, we move on, as a TEAM, to something new. This would help to prevent further non-compliance, aggression and litigation attempts that the 'doctor knows best' model sets up.
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