Organisation seeks to increase the involvement of patients in the decision making process (and I’m delighted)

A couple of weeks ago I wrote a post which was triggered by two conversations I had had with friends who had recounted to me tales in which it appears their doctors were not willing to entertain their own thoughts about their symptoms. As I detailed, both of them put forward (I think) utterly reasonable, logical and plausible explanations for their symptoms, only to be rebuffed by their doctors who then put (in my opinion) much less likely explanations forward. Both my friends, were quite dissatisfied with the outcome of their consultation, and understandably so.

I was reminded of this when reading, this week, about a piece of research which appeared in the Archives of Internal Medicine [1]. In this study, researchers sought to ascertain individuals’ attitudes and beliefs about the doctor-patient relationship and the decision making process. Here’s an excerpt from the introduction to the study:

Effective patient-physician communication is essential for shared decision making, considered by some to be the “pinnacle” of patient-centered care. Many health care decisions have multiple options and no correct choice. These are called preference-sensitive decisions, and the optimal decision is one that takes into account patient preferences and values in a collaborative process with the physician, known as shared decision making. We sought to describe patients’ intentions to engage in shared decision-making communication behaviors in response to a hypothetical preference-sensitive clinical scenario and to examine the effects of underlying patient beliefs on these behaviors.

The study participants were presented with a hypothetical situation regarding the treatment of cardiovascular disease, and then asked several questions. The great majority (more than 90 per cent) were prepared to ask questions and discuss preferences. However, it was a different story when it came to disagreeing with the doctor. Here, only 14 per cent of people said they would be willing to challenge the doctor’s opinion, often for fear of being labelled a ‘bad patient’. The ‘risk’ here, of course, is that a patient will simply not comply with the doctor’s recommendations, but the doctor may well not know this is the case. Also, the lack of openness here can only really compromise the relationship, I think, and erode the likeliness of a good outcome.

While looking at this piece of research, I found my way to an organisation called the Informed Medical Decision Foundation based in Boston, Massachusetts, US. This organisation funded the research described above and, it appears, is deeply committed to patient advocacy. You can see a short video featuring patients and doctors connected with the programme here.

To be honest, I’m delighted that such an organisation exists, and especially delighted that there are doctors who appear to be mindful of the importance of involving their patients in the decision-making process.

Sometimes, it makes sense for a patient to defer to their doctor. I remember having a discussion one day with a friend of mine who is an anaesthetist. He pointed out, quietly rightly, that patients are generally not the best people to determine which anaesthetic agents he uses – that’s his job. However, there are clearly many situations where, as the authors of this recent study point out, there is not a clear or singular option, and it does make sense to take into account a patients views and preferences when deciding on management.

I hope the Informed Medical Decision Foundation and the concept of shared decision making gets the attention it deserves. I also hope that more doctors ‘get with the programme’. In a way, I sense some doctors will be forced to embrace this way of doing medicine. Otherwise, they risk have dwindling positive impact on their patients, as well as dwindling numbers of patients.

One of the doctors attached to the Informed Medical Decision Foundation (Dr Michael Barry) recently co-authored a piece in the New England Journal of Medicine about shared decision making which you can read here.

This piece points to research in which improved outcomes and perhaps reduced burden on healthcare services. Here’s an excerpt:

Just as there are randomized trials of tests and treatments, there have been randomized trials of shared decision making supported by patient decision aids. According to the latest Cochrane review of 86 trials published through 2009, the use of patient decision aids for a range of preference-sensitive decisions led to increased knowledge, more accurate risk perceptions, a greater number of decisions consistent with patients’ values, a reduced level of internal decisional conflict for patients, and fewer patients remaining passive or undecided.The use of decision aids is also associated with patients’ choosing prostate-specific–antigen tests for prostate-cancer screening and major elective surgery less often, which suggests that shared decision making could be a tool to help address the problems of overdiagnosis and overtreatment.

The piece ends with this paragraph:

If we can view the health care experience through the patient’s eyes, we will become more responsive to patients’ needs and, thereby, better clinicians. Recognition of shared decision making as the pinnacle of patient-centered care is overdue. We will have succeeded in building a truly patient-centered health care system when an informed woman can decide whether to have a screening mammogram and an informed man can consider whether to have a screening prostate-specific–antigen test without their clinicians labeling the decision “wrong” on the basis of different values and preferences.

Three cheers for these sentiments, I say.

References:

1. Adams JR, et al. Communicating With Physicians About Medical Decisions: A Reluctance to Disagree. Arch Intern Med. 2012:1-2. doi:10.1001/archinternmed.2012.2360

21 Responses to Organisation seeks to increase the involvement of patients in the decision making process (and I’m delighted)

  1. Craig 13 July 2012 at 3:08 pm #

    I’m not a blissfully unaware patient. I will read in meticulous detail, as far as my understanding will take me, about everything my doctor tells me (and some of the things he doesn’t!) and I got labelled on my medical record as “erratic and potentially violent” because I dared challenge a doctor who told me I had no option but to take his advice.

    Please bear in mind, this was an exchange over blood pressure medication – There are many many options here, and I didn’t like the one – I can’t remember it’s name – he was offering me.

    Why do I have to remind my doctor that, as a competent adult, with free choice, I could choose not to take his advice and go elsewhere? Why do I have to justify my own reading of risks and benefits associated with medicines I’m offered, and get scalded on my medical record for deeming the risks of one course of action not to outweigh the benefits?

    The point is, I shouldn’t have to.

  2. Tom McAnea 13 July 2012 at 3:08 pm #

    Dr Briffa,

    I see my consultations with patients as being about partnership. As you know well, if one listens to patients, explores their concerns and expectations and reaches a joint decision about how to manage their symptom/condition, then they are much more likely to follow a lifestyle change or medication regime. The key is effective communication.

    Tom

  3. Craig 13 July 2012 at 3:46 pm #

    Tom,
    It’s refreshing to hear that. My doctor has never so much communicated with me, rather told me what to do. Bottom line is, I don’t like being told what to do. No matter what the situation, I have to feel like I’m the one who made an informed decision.

    My doctor can’t work with that, and it has eroded our relationship. Rather than work with me, he works against me and health care can’t operate in that vacuum.

  4. Hil 13 July 2012 at 5:06 pm #

    I now have an uneasy relationship with my doctor(s) – as like Craig I feel dictated to about which type of high blood pressure medication I should take & the strength. Plus, being told I need blood tests which will also no doubt mean I’m prescribed statins which I’ve said I will never take. I’m now afraid to visit my doctor as my blood pressure shoots through the roof, he has become an adversary!

    Doctors seem to be in complete denial about any side effects their patients report & to listening to patients concerns on this score. Many patients research in depth their ailments & have far more knowledge than their doctor when it comes to which medication they feel is necessary & that they are happy to take. It is time doctors started listening to their patients & not blindly following drug company propaganda.

  5. Kathy 13 July 2012 at 5:34 pm #

    Dr. Briffa, there is a great website, medicaladvocate.com, by Dr. Steven Kussin, the author of “Doctor, Your Patient Will See You Now.” He is all about empowering patients. You might want to look into that site!

  6. Chris 13 July 2012 at 6:26 pm #

    Glad to say that I had a very good experience with the Cardiology team at Wythenshawe Hospital. They wanted me to go for an angiogram and said that they would do an angioplast if necessary when they ‘were there’ but that had a risk attached to it of 1 in a 1000 deaths. I asked whether my situation merited it and they said that, if I hadn’t been referred by another consultant they would dismiss me without treatment; we agreed that this was the best approach and we exchanged letters very amicably to that effect.

    My GP and T3 though… Why is it that GPs do not want to dispense T3 when all the signs are it is a more effective treatment?

  7. Graham 13 July 2012 at 7:13 pm #

    I’m forever signing AMA (against medical advice) forms at doctors offices and hospitals! When my first son was born, they put him in the NICU and he was perfectly fine. I think they were punishing my wife and me for not getting induced when we “should have.”

    He was perfectly healthy and I finally explained that I will get my lawyer on the phone in an instant if he wasn’t discharged right them. Funny enough, his “symptoms” cleared right up and they let him out!

  8. Craig 13 July 2012 at 8:55 pm #

    Hil, you are mirroring my experience. Seriously, my blood pressure is slightly high at home – I admit! – but I was 3-stone overweight (which I’ve rectified) and I lived on trashy processed foods which caused constant stress to my stomach (which probably wasn’t helping from an inflamation perspective).

    I’m MORTIFIED of blood tests. Every time I went to my doctor, I was told to go for blood tests. I refused, due to my horror of them. There was never any discussion about resolution of my fear, never any way to make them easier, it was all or nothing, and as such my doctor has, as Hil states, become my main adversary. The moment he mentioned them, or he started writing out my blood-test paperwork for me to take, my blood pressure went from 130-40/70-75 to 200/100.

    I told him to log on my file not to discuss with me or contact me about blood tests. I recevied a letter yesterday – “Preparing for your blood test”. What?!

  9. FredB 13 July 2012 at 9:12 pm #

    After two years as a heart patient I am an experienced patient. I have concluded that engineering is a more humane discipline than medicine. I have committed three acts of mutiny that produced better outcomes. That’s the executive summary. Anything more would just ramble on too long.

  10. FrankG 13 July 2012 at 10:04 pm #

    Thank you Dr Briffa and it is really great to hear that there is increasing recognition of the importance on involving patients in the decision making process — especially when it comes to dealing with chronic conditions where often the patient knows more about their day to day care than the Doctor can.

    I have seen an huge change in this situation from my first career (1970-80s) as a Registered Nurse in the Royal Navy. In those days the senior surgeons both acted and expected to be treated like demi-gods :-)

    Nowadays I have no doubt that: on occasion, my own Doctors consider me to be a “difficult patient”… although form my perspective I am acting in my own self-interest as my best advocate.

    I am an huge advocate of informed decision.

    Your anaesthetist example did remind me of a few years back when I was admitted urgently for an appendicectomy… I was only too glad to trust in the professional expertise of the surgical team, without question, in that case ;-)

  11. dawn 13 July 2012 at 11:31 pm #

    I can tell my notes say I am a ‘troublesome’ patient because I am well informed and a member of a thyroid group. I read medical research and know that some things they don’t do are as important as the things they do. Anytime we find anything out about my condition it is always tests I personally ask for by mail before I go in and ask verbally. Drs don’t like me and it is not right that this has to be so.
    I have asked reasonably for things and then find that letters to consultants are saying derogatory things about me so I don’t get a fair hearing there either :(. Now the Dr refuses to do anything saying she has no idea what to do for me. My notes are not comprehensive either can’t imagine anyone being able to see what is wrong with me from those. That’s another thing Drs seem to dislike you looking into your notes.
    Nice to see this organization but no good to me while it is not in the UK.

  12. Helen Howes 14 July 2012 at 6:30 pm #

    Anaesthetists are not infallible – Sample conversation
    Me: I can’t take any aspirin-based painkillers
    A: Why?
    Me: I’m profoundly allergic
    A: What happens?
    Me: I go into anaphylactic shock
    A: What do you mean by that?
    Me: How many sorts are there? I mean the one where you die
    A: Oh, in that case you may be OK with Pethidine
    (NOT)

    Informed patients are not always unpopular – my GP said “you know more about this than I do” – to which I replied that I should, as I am effectively a Specialist, and he is a Generalist.. He is a useful gateway to the relevant Specialists, but they can be utterly condescending and tend to assume that non-possession of a penis = no brain.. Oh, and try being Fat as well as Female.. I cured the former, but the latter just won’t go away

    HH

  13. Marie 14 July 2012 at 9:09 pm #

    Here comes a story from Sweden. It`s about a friend of mine, a woman in her seventies.

    O suffered a mild stroke and was sent home with several medications (none before).
    After some time she noticed that her memory was getting worse.
    She felt that it had nothing to do with her stroke, but suspected that it was a side effect of Zocor (=simvastatin).

    Now and then, a nurse used to visit her.
    She asked the nurse to tell the doctor at the health clinic that she wanted to stop with Zocor and why.

    The nurse said that she could not help her because if O stopped she would end up in a wheel chair or die. O tried to persuade her, but the nurse refused.

    The nurse found O too persistent and suggested that she should get her some sedatives (bensodiazepines). I am so glad that O was strong enough to resist and knew the dangers with this type of medications.

    The months went by.
    Eventually, O could go to the health clinic herself.
    She told her doctor the same story and got exactly the same reaction from him.
    But O insisted and said – I want you to write down that this is my own decision and I also want you to send a report about my side effects.

    He answered – why should I do that?
    No-one has asked me to do something like that.

  14. Marie 14 July 2012 at 9:46 pm #

    Here´s another story from Sweden.
    It`s about a man in his seventies.

    One day, I met a friend of my sister.
    Her husband was on Lipitor (atorvastatin).
    I asked if he was still taking the medication.
    She said – no, he ended up in the hospital.

    One morning, her husband had phoned her at work.
    He was upset and wondered if they had seen each other earlier that day.
    Time had passed (approximately 2 hours) but he could not remember what had happened during that time. His wife became very worried. She suspected something serious and ordered an ambulance.

    At the hospital, they made different examinations.
    They could not find anything out of ordinary.
    The doctor explained the symptoms with – it`s just something that can happen.

    Just before the couple were going to leave the hospital, the wife remembered that she had a bottle of Lipitor (the last medication) in her handbag. She showed the bottle to the doctor and asked – could there be any connection to this?

    The doctor answered – no – without checking the reference book.

    P.S.
    Dr. Duane Graveline has written several books about statins.
    One of them is called – Lipitor – thief of memory.
    I prefer The Statin Damage Crisis.
    You will find his statin-story, and many others, at spacedoc.net

  15. Doc´s Opinion 15 July 2012 at 1:18 am #

    This is a really important issue to think about for practicing doctors. I guess a good example of a preference-sensitive decisions is the decision on when to prescribe cholesterol lowering drug therapy in primary prevention. There are multiple options, often you can argument both ways. A thorough, unbiased, informative approach from the doctor is however necessary to help the patient engage in decision making.
    This approach, in my mind, is commonly the correct one, but it usually is more time consuming. Doctors also have to be educated on how to inform patients. In today´s medicine, providing information to patients is one of the most important role that doctors have. Sometimes it may be easier for the doctor just to tell the patient what to do, however by doing that their approach is commonly biased.

  16. Richard 15 July 2012 at 11:27 pm #

    My doctor always asks; ‘What do you think it might be’ and ‘is there anything else you would like to tell me’ I think that’s the best two ways of engaging with your patient.

  17. jake3_14 16 July 2012 at 9:49 pm #

    I notice that the foundation doesn’t have a program for shared decision-making for treating high cholesterol, markers for heart disease (usually conflated by doctors), or thyroid issues, which are arguably the three situations that benefit the most from an informed patient.

  18. Dr John Briffa 17 July 2012 at 5:53 am #

    jake3_14

    high cholesterol, markers for heart disease (usually conflated by doctors), or thyroid issues, which are arguably the three situations that benefit the most from an informed patient.

    I’m inclined to agree with you here…

  19. Ted Hutchinson 17 July 2012 at 8:24 pm #

    Re I remember having a discussion one day with a friend of mine who is an anaesthetist. He pointed out, quietly rightly, that patients are generally not the best people to determine which anaesthetic agents he uses – that’s his job.
    As I nearly died as a result of the actions of an anaesthetist party to on operation on my polio damaged knee refusing to take note of the fact I was a polio damaged patient I think it’s important that even anaesthetist’s listen to their patients.

  20. Tom 19 July 2012 at 4:02 pm #

    Really encouraging to see people like Richard who have good doctors, and also people forming trusting relationships and mutual respect with their doctors.

    Lower levels of education are associated with more health problems, therefore a lot of the patients doctors see *aren’t* particularly clued up. Whilst it’s our job to explain things well, it is A) hard to judge how much they’ll take in and B) hard to do full stop in the 10 minutes (or 7 minutes) allocated to each patient at most GP surgeries. With respect to Dr. Briffa (and he knows I do respect his work!), I suspect he gives significantly longer to his private clients, with no end of benefits I’m sure. The opportunity to explore things in detail and at the patients’ pace is frequently the suspected real reason why alternative therapies “work”.

    Another point to note is that many, many patients don’t want to have those discussions! We *are* taught patient-centred care etc. in medical school these days, but so many times I’ve explained options and encouraged a patient to make a choice (with a clinic or surgery running later and later…) only to be told “well, you’re the doctor, aren’t you? Shouldn’t you know what to do? That’s why I came here!”

    Obviously, there is no excuse for not being clued up to the evidence base for whichever condition you are being asked to assess, or being condescending when a patient is clearly clued up themselves. But just like the police are often guilty of treating everyone as criminals (because they spend so long dealing with criminals), it is not just for reasons of god-complex, ego or whatever that doctors can be patronising – because chances are, 99% of the other patients we’ve seen that day have NOT been motivated to take responsibility for their own health.

    So, I know I’m always saying this, but rather than be combative, take the good quality evidence with you, and leave it with doctor with the polite suggestion that they look at it and discuss it next time you see them.

  21. Christopher Palmer 19 July 2012 at 11:33 pm #

    There might be something of a selection pressure acting upon incumbent anaesthetists, or even upon those whose preference and ambition is to enter the profession, that doesn’t especially favour the trait of being a good listener. Continuing in a similar vein cardiology, politics and economics may favour good story-tellers.

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