EmpathyWorks

New Post in MPN Forum - The Empowered Patient: New Years Resolutions

2012-01-18T00:05:00.001-05:00

See the February issue of MPN Forum for the lastest The Empowered Patient column, New Year's Resolutions: A Road to Empowerment. MPN Forum: The Empowered Patient (Feb, 2012)

Though it may be difficult to keep New Year's resolutions several strategies may help you you stay on track. These include staying positive, setting achievable goals, learning from slips and rewarding small successes.

New post in The Empowered Patient on Informed Decision Making

2011-12-15T22:11:00.000-05:00

See the latest "The Empowered Patient" column in the January issue of MPN Forum, an online magazine that features stories and news about myeloproliferative neoplasms. In my column, I share personal experiences with shared decision making and offer some background information about the process of informed medical decision making. The column can be found at: www.mpnforum.com/the-empowered-patient-january/. You can find a link to MPN Forum in my favorites on the right side of this page.I have added a link to the Foundation for Informed Medical Decision Making in my favorites as well. Check it out for excellent information and news.

Empathy and Reflective Statements in Primary Care Discussions About Weight

2011-12-11T11:03:00.001-05:00

A recent study of discussions of weight concerns in primary care, published in the Journal of the American Board of Family Medicine (http://www.ncbi.nlm.nih.gov/pubmed/22086809), found that physician empathy (assessed by trained raters who coded audiotapes of primary care visits) was linked to improved patient satisfaction, while physician use of reflective statements was associated with patients' perception that the physician suppported their autonomy. The study included 40 physicians and 320 of their overweight or obese patients. Of note, physician empathy was only rarely expressed in these encounters; only 18 of the 320 encounters were rated as demonstrating a physician empathy score of greater than 1 on a scale of 1-5! Of those encounters with empathy scores greater than 1, 27% of the patients rated their satisfaction as excellent, compared to 11% of the visits with empathy scores equal to 1. Reflections were rated as present in only 38% of the encounters. When reflections were present, 47% of patients reported high levels of autonomy support, a measure dervied from Self-Determination Theory (SDT). Previous studies suggest that increased autonomy support is associated with increased intrinsic motivation as well as improved patient follow-through. The authors conclude that strategies that increase physician empathy and number of reflective statements could improve patients’ adherence to recommendations. Limitations of this study include the small sample of physicians, high patient refusal rate and a rather well-educated patient population.

Two Great Links

2011-10-22T10:40:00.000-04:00

I have added two new links that I highly recommend:

Shared Health Data - a blog and more, written by my friend and colleague, Susan Woods, MD, MPH, a primary care clinician, researcher and e-health advocate at the Portland, Oregon Veterans Adminstration Medical Center and Oregon Health Sciences University. I referred to Shared Health Data in my previous post about Personal Health Records. Sue describes her blog as follows, "This is a blog about better health and healthcare through exchange of health information, greater transparency and proactive engagement of consumers." It is all that and more. Check out her most recent column which celebrates Steve Jobs's contributions to the transformation of computing into consumer-friendly and empowering applications. She also imagines what Steve Jobs might have created if he worked in healthcare. Click on the link in my favorite sites list or go to http://www.sharedhealthdata.com/
Mind the Gap - written by Stephen Wilkins, MPH, a former hospital executive and consumer health behavior researcher who became inspired to focus on patient empowerment as a caregiver for his wife during her successful, and traumatic, experience with cancer. Mind the Gap offers, "evidence-based insights and best practices for improving patient engagement and the quality of communications between patients and their doctors". Stephen's latest post is entitled, "3 Reasons for Becoming More Patient-Centered". Check out the blog at: http://healthecommunications.wordpress.com/ . It is also on my favorites list.

Personal Health Records: Another Path to Empowerment

2011-10-15T08:22:00.003-04:00

In my latest column in the October issue of MPN (Myeloproliferative Neoplasms) Forum, I share ways in which I have used a Personal Health Record (PHR) to track information about my condition. Using the tools available in PHRs, I can create graphs that show the relationship between treatments and key lab values. Sharing these graphs with my physicians not only helps us to make better decisions about my treatment, it also saves time and allows us to focus on what's important to me, including my feelings and concerns about my condition. My doctors have been very receptive to my use of these tools, and I have benefitted from the increased time they havefor empathy!

See link to the column in MPN Forum below:

http://mpnforum.com/a-oct-michael/

New Posting of The Empowered Patient on MPN Forum

2011-09-17T11:58:00.003-04:00

See the new September issue of MPN Forum for my newest contribution to this online forum for patients with myeloprolifeative neoplasms. The new column is entitled, "Can Clinicians Empower Patients?" and is based on a previous post here.

Enjoy and please comment either here on on the Forum. The link to the column is: http://mpnforum.com/mike-sept/

Michael

New Monograph on Communicating Risks and Benefits

2011-08-21T13:45:00.003-04:00

For your interest, the Risk Communication Advisory Committee of the FDA recently published a monograph, entitled "Communicating Risks and Benefits: An Evidence-Based User's Guide". This is a valuable resource that provides readers, clinicians and public health folks with guidance about how to understand, interpret and communicate about risk. It is relevant to our discussion about the risk information provided by 23andMe and other genomic profiling services. I was fortunate to have the opportunity to serve on this committee, learn about this important topic and contribute to this effort.

Click on the title of this post or paste the link below into your browser to peruse or download the monograph:

http://www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Reports/UCM268069.pdf

New Column in MPN Forum

2011-08-20T14:11:00.005-04:00

I have published a revised version of my "Being Heard" blog post in the August issue of MPN Forum. Click on the title to get to the column and the newsletter.

Michael

Being Heard

2011-07-17T15:39:00.011-04:00

The following post was originally posted to the MPD Chat Listserve on July 7, 2011 as the 3rd installment of the collumn: Communicating and Connecting: Getting What You Need From Your Health Care Team

Being Heard – Number 3

In my last column, published on MPDchat on June 23, 2011, I offered some suggestions for questions that you might ask your docs and health care team members so you have the information you need to fully participate in health care decisions. This column offers some suggestions when your clinician is not responsive to our needs.

I know some docs respond with impatience or get annoyed when we tell them we have questions or that we need to engage in a discussion about our condition or treatment options. Some clinicians get defensive and feel threatened if we bring information or research findings from online sources, such as the MPDchat listserve or MPD Forum. Many health care professionals may be uncomfortable if we know something that they don’t. However, these are not excuses for being short or dismissive. It is my view that physicians should take whatever time is necessary to address our questions and concerns, or perhaps set up a follow-up to allow for a longer discussion. At a minimum, they should refer us to someone in their practice or clinic who has the time to respond to our needs.

Having said that, I know it may be hard to be assertive and speak up and ask for what we need. Even though I am a physician myself, I take time to prepare for my medical appointments even though I have a very responsive and personable oncologist.

So, here are some suggestions for how to help your doctors engage respond to your questions, concerns, or needs:

• Prepare for the visit by writing down your specific concerns and questions. Prioritize them so you can be sure to ask the most important one or two.

• Ask permission to ask questions or to share concerns or information. At some point early on in the visit, say: "Doctor....I have some concerns (or questions) that I would like to share with you about the treatment you have recommended (or we have planned). Would it be ok if I shared them with you? Most docs will say yes...and then you can ask questions and share your concerns [see suggestion below]. If he/she says no....you might have to say, "I don't feel comfortable moving forward with the plan while I have unaddressed concerns". Hopefully, this will trigger a response. If not, you might have to ask "Who else in the practice/clinic can address my concerns?"

• Share your discomfort/worry/concerns: "Doctor, I need to tell you that I am worried about xxxx and xxxx." If they change the subject or give an inadequate response, give the doc a second chance and repeat the statement. If you get a defensive response, you might say, "I know there is no way to eliminate all the worry...however, I'd appreciate knowing your ideas for helping me get through this". Finally you might ask, "What would you suggest I do to address my remaining concerns?" Hopefully, they will respond with something thoughtful, offer a referral or second opinion, or at least offer increased monitoring or ways to check up on you.

• For those docs who jump right in as soon as they walk in the exam room and start their evaluation and exam, you might need to prepare a way to share your agenda at the very beginning of the visit, for example, "Hi….before we get started today, would it be ok if I told you what was important for me to accomplish today?

• If you have a sense that it is time pressure that is getting in the way, you might say, “I know you are pressed for time, so I thought you might want to know what I am most concerned about…(wait for response); or:” I really value the time we have together to review the management of my condition. So, before you tell me what you would like to get done today, I’d like to tell you what I need. Is that ok?”

• Let your team know that you have been doing some reading or checking online, and share the source of the information. (e.g., moderated online support group; medical journal article, medical news service, national cancer institute site, etc.). Bring a copy of the article or reference with you. Again, ask permission to share it with your doctor. ("I found some useful information that I would like to share with you from[mention source]. Are you willing to review it and give me your opinion?" Again, if they say no, share your concern about this and ask whether someone else inside or outside the practice would review the material you have brought.

• Ask for increased monitoring and follow-up. If you have any remaining concerns or worries, ask for ways you might get in touch with your treatment team to get help for any problems that arise and make sure you have a follow-up appointment before you leave. You can ask, "Who should I connect with if I have a problem or question? What is the best way to get through?"

I hope these suggestions are helpful for helping you have more productive conversations with you health care professionals. As always, I am interested in your ideas and experience. Let us know what works for you.

Best wishes,

Michael

Questions are the Answer

2011-06-26T10:14:00.003-04:00

I have posted the second installment of my column on the MPD Chat listserve below. Though this column is written for members of the myeloproliferative disorders community, my suggestions apply across all conditions. A previoius post on this blog contains similarPlease leave a comment or offer your ideas for questions that patients might ask to enhance their participation in care.

June 23, 2011 – Number 2

The National Patient Safety Foundation's Ask Me 3 campaign (see: http://www.npsf.org/askme3/) encourages patients to ask 3 questions of their health card team to increase their understanding of their health conditions and what to do about them. The 3 questions are:

What is my main problem?
What do I need to do?
Why is it important for me to do this?

Though these questions are good ones, I view the The Ask Me 3 questions as a minimalist approach for promoting clinician-patient communication, patient understanding and enhanced patient capacity to manage their conditions. These questions will help you get your clinicians' view of what you need to know, including their impression of what ails you (e.g., a diagnosis) and the options for managing your condition. Hopefully, if you ask the second question, you will learn not just about treatments, but also self-management options (i.e., what you can do to manage your condition). These questions hopefully will lead to a discussion and not just a lecture.

However, many clinicians do not have the inclination or skill to respond to these basic questions well. So, you may want to bring some additional questions. Here are a few others you might want to consider asking:

"What else might be going on to explain my symptoms, examination and test results?" Ask "what else?" at least twice. Dr. Jerome Groopman, the noted oncologist and writer thinks "what else?" is one of THE most important questions you can ask. Asking "what else" actually helps clinicians to reflect and consider possibilities they might have prematurely rejected in their efforts to "make" a diagnoses.
"What aspects of my presentation are not well explained by your diagnosis?" "Presentation"" is a word that clinicians use to convey the combination of symptoms, physical examination findings, and lab tests. They will be impressed if you use this word! Again, you are helping them to reflect and consider what doesn't fit their conceptualization.
"How sure are you that this is my main problem?"
"What tests would help you to be more sure?" For those of us with MPNs, you can get more specific and ask about JAK2 testing, bone marrow biopsies, imaging tests, etc.
"How useful would it be to see another doctor who has more experience treating patient with my condition?" This is especially important question for us, since MPNs are relatively uncommon and only those who treat many MPN patients are aware of new and emerging treatments.
"What are other treatment options?" This is similar to the "what else could it be?" question in helping the clinician expand his/her thinking about possible treatments.
"What are the pros and cons of the treatment options?" Many clinicians minimize the down side - but it is important that you make fully informed choices that include an understanding of the risks and benefits.
"What things can I do, (besides taking medication or undergoing other treatments) that will help me to manage my condition and have the best chance of maintaining my function?" Hopefully, this will lead to a discussion of strategies that may enhance your capacity to monitor you condition, maximize your well-being and function (e.g. eating well, being physically active, paciing oneself, etc.)

I realize that it may be challenging to ask ALL of these questions in a single visit...and some clinicians my bristle or balk if you pull out a list or ask too many questions. That kind of reaction is regrettable. After all, this is your life, your health, your condition! The doc may be the expert on the condition and treatment, but you are the expert about you!. Clinicians have the knowledge about what to prescribe. Yet, to effectively manage a condition, especially a MPN, you need to learn how to monitor, manage, cope and adapt.

I hope you will share your own favorite questions here....

Asking is the first step. As the US Agency for Healthcare Research and Qualtiy has said in their ads, "Questions are the Answer!" see: http://www.ahrq.gov/questionsaretheanswer/

Next column, I'll discuss what patients and caregivers can do if their clinician is reluctant to answer questions or hesitant to consider alternative diagnoses, treatments, referrals or self-management education.

Best wishes,
Michael

New Column on Communicating with Your Health Care Team

2011-06-11T19:01:00.002-04:00

At the request of the moderator of an online support group for people with Myeloproliferative Neoplasms (MPNs) and their caregivers, I will be writing a regular column, "Communicating and Connecting", that focuses on helping patients and caregives communicate with members of the health care team. (As noted in my previious posts, I have a MPN, Polycythemia Vera, that is currently is being controlled with medication.)

"This is my first installment of this column, which I am very excited to humbly offer to the readers of MPD Chat. Thanks to Beverly for inviting me to share my thoughts about communicating with your health care team, a topic that has been a central focus of my entire 30+ professional career as a physician educator and part-time researcher.

I must start by apologizing for being tardy with this first offering, as I had promised Beverly I would send it to the group on Tuesday, and it is now past midnight on Thursday. I fell asleep at the computer on Tues eve. I am not the night owl I used to be, which I attribute to a combination of aging, my PV and the interferon I have been taking for more than 18 months.

In this first column, I thought it would be useful to share a little bit about me, so you have some context by which to judge my viewpoints, and associated bias. I am the grandson and son of physicians and grew up feeling awe and admiration for both my grandfather and dad. I actually began hanging out in my father's office, which was in my house, at the age of 4. (The office staff were convenient babysitters). When I became old enough to help out (by filing charts or stamping them with dates), my father would often invite me in to his consultation room to introduce me to grateful patients who were more than happy to share their stories or allow me to view their healing eye conditions (my dad was an ophthalmologist, an eye surgeon). My dad loved his work, and enjoyed his daily interaction with his patients. Sometimes, he would call me in just to have a patient retell the joke that she had just shared, or to introduce me to a valued member of our local community: the town librarian of 50 years; the former fire chief; or the nurse supervisor of the local hospital's operating room. He loved hearing their stories and it was clear they loved the extra attention and interest he showed in them. To him, they were more than just eye conditions, they were "whole people" who just happened to have an eye condition... and he loved caring for them. My grandfather, a family doctor for more than 60 years, was most proud of his opportunity to care for several generations of family members. I will never forget him telling me on the cusp of starting medical school that he knew I would become a good doctor because I had "a good mind....and even more importantly, a good heart".

So, I followed my grandfather's footsteps into primary care medicine, then pursued additional training in psychosomatic and behavioral medicine, and subsequently psychiatry. I embarked on an academic career, inspired by my mentors at the University of Rochester, which is known for it's focus on the "biopsychosocial model" and the importance of strong training in interpersonal and communication skills. I have been very fortunate during my career to have had many opportunities to teach communication skills to medical students, residents and practicing clinicians and my current job includes a heavy emphasis on developing and implementing training and other strategies to improve clinician-patient communication.

And, despite some progress in recent years, there is great need for improvement in clinicians' communication skills. The evidence for this comes from not only a large body of research in clinician-patient communication, but also from my personal experience as a patient, from your stories on this list, and from the stories of many, many other patients and caregivers.

The good news is that we, as patients, can take steps to improve the communication process, steps that will increase our participation in care, help us to make good health care decisions, and ultimately improve the quality of our lives. This will be the focus of subsequent posts to this column, which will include links to resources, tools and other useful information on this topic. I also hope you will contribute your thoughts, ideas and experiences. Tell us what has worked for you and your family members and where you see opportunities for improvement. We will all benefit if we share "best practices".

With best wishes,

Michael"

People with Higher Levels of Empathy Enjoy Sex More

2011-06-11T18:37:00.007-04:00

Researchers have identified another benefit to working on enhancing empathy skills.

A recent study, published in the June 3rd issue of the Journal of Adolescent Health, found that empathy, self-esteem and autonomy are associated with sexual pleasure among students, aged 18 - 26 though, for men, only empathy was significantly associated with sexual pleasure.

"Sexual health includes sexual well-being, and sexual enjoyment is an important part [of that]," said study researcher Adena Galinsky, of Johns Hopkins Bloomberg School of Public Health. "How people interact and their ability to listen to each other and take each other's perspective can really influence the sex that they have."

The study analyzed data from about 3,200 students, ages 18 to 26, who were surveyed between 2001 and 2002 as part of the third wave of the National Longitudinal Study of Adolescent Health.

The study citation is: Galinsky AM, Sonenstein FL. The association between developmental assets and sexual enjoyment among emerging adults. J Adolescent Health. Jun;48(6):610-5, 2011. Epub 2010 Dec 30.

An Oncologist's Experience with his Spouse's Cancer

2011-04-16T14:04:00.004-04:00

It has been a while since I posted. I was inspired to place an entry here after reading the last in a series of New York Times blog posts by Peter Bach, an oncologist at Memorial Sloan-Kettering Cancer Center about his and his wife's experience with her cancer diagnosis and treatment. I highly recommend this series, as well as the comments posed by readers. See below for the comment I posted to the NYT blog:

"Thanks to Dr. B, and his wife, for being so willing to share their experience with us, in such a public way. Dr. Bach's openness and honesty, his efforts to be reflective and mindful, and his capacity to use his insights and learning to improve his caring for patients, is both instructive and inspiring.

As a medical educator, I have encouraged students to learn from the experiences of patients and their caregivers. They are our most valuable teachers. Hearing first hand about the emotional, physical, interpersonal and spiritual challenges of having an illness helps us to learn what patients and their loved-ones need. Learning about their experience also provides opportunities to respond with empathy and compassion, as well as with treatments, resources and services that might be available to help tthem to manage and cope. If we don't have the skills or capacity to respond ourselves, we can refer patients and their caregivers to colleagues or to valuable services and programs in the community, including those provided by other patients and peers. Yet, as many others have commented, too many clinicians feel unprepared to both uncover these needs, or respond effectively. This must change. Hopefully, Dr. B and other enlightened faculty will continue to help future students to develop competencies in clinician-patient communication, compassionate care, patient activation and self-management support.

As Dr. B has demonstrated, we can also learn valuable lessons from those clinicians who are willing to share their personal experiences with us, however painful. Thanks again for sharing his story and providing an opportunity to learn from all those commenting here. I join others wishing Dr. B. and his wife well. I also want to second the recommendation made by another reader about Rachel Remen's books, Kitchen Table Wisdom, and My Grandfather's Blessings. Rachel is a physician who epitomizes the skills associated with compassionate relationship-centered healing. She is also a fabulous writer and storyteller."

Michael

Wish Statements Help Doctors Deliver Painful News to Patients : Internal Medicine News

2010-11-13T09:54:00.001-05:00

Wish Statements Help Doctors Deliver Painful News to Patients : Internal Medicine News

Tim Quill, an old buddy of mine from my Rochester training days, is a wonderful and truly compassionate physician. His writing on this topic is insightful and extremely practical and helpful. See especially:

Quill, T. E., Arnold, R. M., & Platt, F. (2001). "I wish things were different": expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med, 135(7), 551-555.

Michael

CBC News - Canada - The limits of feeling someone else's pain

2010-10-02T15:57:00.001-04:00

CBC News - Canada - The limits of feeling someone else's pain

Interesting article that questions the value of empathy in some situations, particularly in the political contex.

The author also quotes an article by a physician, Jane Macnaughton, in a recent journal of Lancet who writes that feeling the distress of patients can be "unhelpful and even dangerous". Dangerous? Well, if one is in the midst of a delicate proceedure, maybe. And, sure, it may be emotionally and physically exhausting to work in a setting that exposes us to the pain of those who are suffering. We all have limits, and as professionals, we must learn to measure our own internal reserves, and find ways to replenish them when we are depleted.

Macnaughton apparently also writes that a doctor who says "I understand how you feel" can be perceived as insincere, provoking resentment from the patient. I agree that clinicians must be careful not to use this rather paternalistic response when a patient expresses a strong emotion. They also need to be careful not to prematurely assume what the patient is feeling. However, genuine efforts to understand the a patient's distress will almost always be valued and appreciated, especially when reflected back to the patient to check for undertanding. Softer responses like, "I can imagine" or "I think I understand what are you feeling" are more likely to be fully accepted by the patient.

I will go read the original Lancet article...look for more on this later.

However, in my own experience, one can never be too empathic.

Michael

Can Clinicians Empower Patients?

2010-08-30T11:58:00.006-04:00

On first blush, my answer to the questions, "Can clinicians empower patients?" was an unqualified "Yes"!.

Recently, however, on my Facebook page, I posted a link to a NY Times book review of "The Empowered Patient" by Elizabeth Cohen. Cohen, a CNN journalist, writes about her personal experiences dealing with medical crises and what she learned about the need to advocate for quality health care. Her book provides suggestions about how patients can prepare and arm themselves to increase their chances of getting the care that they, or a loved oned, need.

My posting led to a lively discussion among some of my Facebook friends about the term, empowerment. Eleni Chambers, a UK-based expert in self-management strategies, stated that clinicians can't actually empower patients, just support or enable empowerment. Some patients, she argues, don't want to be empowered, and others have serious barriers to empowerment (e.g., lack of access, low socioeconomic status) that can't be easily addressed by clinicians.

However, I do believe that I, as a clinician, can empower many of my patients. For one, I can share the "power" of choosing tests, procedures and treatments. I can collaborate and partner with patients, rather than simply prescribe, direct or even advise. I can also encourage my patients to let me know their ideas, expectations, feeling and goals, so I can better tailor my recommendations for them. Once I have a good idea about what a patient wants and needs, I can offer options and choices and help my patients to consider the pros and cons for each. Others have referred to this process as shared decision making. Ultimately, patients decide, unless of course they have a condition that limits their capacity to make rational decisions. Sure, some patients, particularly some older patients, want me to decide or direct therapy. That is ok, I am happy to do that if the patient prefers that I take the lead in picking a treatment.

However, I also know that patients are more likely to follow through with treatment when their autonomy is supported and respected and they are provided with choices and options. (See expecially the work of Geoff Williams, MD, PhD, and other proponents of Self-Determination Theory - a topic of a future column).

I agree, however, that there are limits to what I as a clinician can do to "truly" empower some patients. I can't empower a person who doesn't want to be empowered, and I can't overcome barriers that neither I nor the patient have control over. As Jessie Gruman, PhD, of the Center for Advancing Health (CFAH) has noted (see link in my link section), it may be better to use the terms "prepared" patient or "engaged" patient, rather than "empowered" patient. Activated, a term championed by Judith Hibbard, is another way of framing the approach. See the CFAH website and its associated Prepared Patient Forum (see my link to this site) for lots of useful tools, resources and strategies for arming patients, their families, and other advocates.

Whatever the term, helping our patients to more fully participate in care provides all sorts of positive benefits!

Ronald Pies on the Value of Listening

2010-08-29T12:25:00.003-04:00

Here is an article from Ronald Pies, MD, a psychiatrist, about the importance and value of listening and compassion, as practiced by Albert Ellis, the founder of REBT.

http://www.nytimes.com/2010/08/10/health/10mind.html

Michael

More suggestions for communicating with clinicians

2010-04-19T20:35:00.002-04:00

See below for a post I made several months ago on the MPD-Chat listserve in response to posts by members describing serious communication barriers with their docs and other members of the health care team. (The link to MPD chat can be found in the link section of this blog).

I know some docs respond with impatience and even disdain when we tell them
we have access to sources of information online. Some get defensive and feel
threatened when we know something they do not. These are not acceptable
responses, in my opinion.

Having said that, it may be hard for any patient to be assertive and speak up. And it may be harder to leave or find another doctor, though this is certainly preferable to having a doc who puts roadblocks in the way of providing, or at least considering, the latest and most effective treatments.

So, here are some ideas for how to let your docs know you have concerns, and some information to share with them:
Prepare for the visit by writing down your specific concerns and questions. Prioritize them so you can be sure to ask the most important one or two.
Ask permission to ask questions, and share concerns and/or information: At some point early on in the visit, say: "Doctor....I have some concerns (or questions) that I would like to share with you about the treatment you have recommended (or we have planned). Would it be ok if I shared them with you? (Most docs will say yes...and then you can ask questions and share your concerns [see next suggestion below]. If he/she says no....you might have to say, "I don't feel comfortable moving forward with xxxx while I have unaddressed concerns". Hopefully, this will trigger a response. If
not, you might have to ask "Who else in the practice/clinic can address my
concerns?"
Share your discomfort/worry/concerns: "Doctor, I need to tell you
I am worried about xxxx and xxxx." If they change the subject or give an
inadequate response, give the doc a second chance and repeat the statement. If
you get a defensive response, you might say, "I know there is no way to
eliminate all the worry...however, I'd appreciate knowing your ideas for helping
me get through this". Finally you might ask, "What would you suggest I do to
address my remaining concerns?" Hopefully, they will respond with something
thoughtful, offer a referral or second opinion, or at least offer increased
monitoring or ways to check up on you.
Let your team know that you have been doing some reading or checking online, and share the source of the information. (e.g., moderated online support group; medical journal article, medical news service, national cancer institute site, etc.). Bring a copy of the article or reference with you. Again, ask permission to share it with your doctor. ("I found some useful information that I would like to share with you from[mention source]. Are you willing to review it and give me your opinion?" Again, if they say no, share your concern about this and ask whether someone else inside or outside the practice would review the material you have brought.
Ask for increased monitoring and follow-up. If you have any remaining concerns or worries, ask for ways you might get in touch with your treatment team to get help for any problems that arise and make sure you have a follow-up appointment before you leave. You can ask, "Who should I connect with if I have a problem or question? What is the best way to get through?"
I hope this is helpful.

Ask Me First!

2010-04-18T14:04:00.002-04:00

Here is the document that I referred to in the previous blog post. This was originally developed for a project, New Health Partnerships (see link section of this blog), that helped health care teams from forward thinking organizations to enhance the quality of the care they provided to patients.

Patients Activating Doctors – Ask Me First!

After practicing agenda setting with the patient and family team members of the improvement team, the next step is encouraging and educating the patients in your practice to participate with you in real clinical visits.

It may be helpful to encourage patients and families to use specific language to prompt clinicians to “Ask Me First!” during actual visits with trained or even untrained clinicians. For example, a patient might say one of following statements/questions at the beginning of a planned care or follow-up visit for a long term condition to prompt the clinician to “Ask Me First”:

• Hi….before we get started today, would it be ok if I told you what was important for me to accomplish today?
• I know you are pressed for time…so...I thought you might want to know what I am most concerned about…(wait for response)
• I really value the time we have together to review the management of my condition. So, before you tell me what you would like to get done today, I’d like to tell you what I need. Is that ok?
• Before we get started...I would like to tell you some of the things I have been doing to manage my condition. I’d love to get some feedback.
• I know it is hard for many doctors to know the best way to ask about the concerns or troubles that their patients have been having. Would you like to know about the difficulties I have been having taking my medication (or following through with treatments…etc)?

Patients and family members may benefit from having information and tools to help them prepare for a visit by thinking about their needs, concerns and questions before the visit and writing them down in a list to help them to remember to share them during the visit. Some practices have found it helpful to create tools and informational materials to prompt patients to participate in setting the agenda. Attached are two examples:

Patient and family advisors from the MCG Health System in Augusta, GA developed the “Doc Talk Card,” a simple form to help patients and their families organize their thoughts and information in preparation for a healthcare visit. The forms are printed into notepads and are available in the reception area of ambulatory clinics.

The resource, “What You Can Do to Prepare for Your Doctor’s Visit,” was developed by the Partnership for Healthcare Excellence, a statewide initiative in Massachusetts to encourage consumers to get active in their health care. The fact sheet can be downloaded from their website at http://www.partnershipforhealthcare.org.

Your team can develop your own materials and strategies. Patient and family members on the improvement team can actively encourage other patients and families to prepare for a visit and prompt clinicians to “Ask Me First.” Ideas include:

• Creating a form for patients or families to fill out before their visit.
• Creating a poster that can be displayed in the clinic.
• Developing a brochure to be made available in the reception area/exam rooms.
• Writing an article for a clinic newsletter.
• Creating a short video that shows a clinician and a patient/family setting an agenda at the beginning of a visit.
• Teaching other patients/family members during group visits or peer support or education classes.

Helping your health care team respond to your needs

2010-04-18T13:46:00.002-04:00

It has been a long while since I posted here. However, I recently was inspired by a conversation with a colleague and friend, Sue Woods, to start posting again.

So, here is a post I made today to the MPD-Net listserve regarding how patients might engage health care providers to be more patient-centered, responsive and active. I will also add the document I referred to in the post to the blog site.

Here is the post I responded to:

Hello, I know there are some of us that deal with Dr.'s that don't seem to show much care. But after 3 yrs of me having to be the medical professional, it's getting old! Is there any suggestions, short of changing Doc's, that would help with getting the Onc/Hem to show some care and interest? Maybe I'm wrong, but when tests are done, shouldn't it be normal for the Dr to call and explain the results? I have to leave messages for the Dr's nurse, and hope someone will call me and explain things? I'm the one who gets the result copies and then have to research the medical info on the web, as no one ever calls me to explain them? The only time I've had any compassion and care shown is when I went to see Dr.Cxxxxxxx in xxxxx! I apologise for the rant, but these doctors really need to do some changing. Pxxxxxxx, Oregon

Here is my response:

Pxxxxxxx,

I am saddened, but not surprised to learn of your frustration. As a physician educator, I have spent my career trying to change the culture of medical care to be more patient-centered. Though I would say that many docs and clinical team members truly want to meet patient needs, many barriers remain, including time...but that is no excuse for not meeting patient needs for information, results...and most importantly, compassion!

As I have mentioned in previous posts here, I have found a couple of wonderful organizations and programs that are striving to enhance patients' capacity to manage their health conditions, as well as their engagement in the process of improving care. See the websites for the Institute for Family Centered Care (www.familycenteredcare.org) and New Health Partnerships (www.newhealthpartnerships.org). I have had the pleasure of working closely with both of these organizations and can vouch for their value to patients, clinicians and health care systems. You will find lots of good resources there.

Pxxxxx, separately, I am sending you a document that I created for a project I was working on that provides some guidance for helping patients get more out of their visit with their doc. It also has links to other resources. I know that we can't include attachements in e-mail to the list, so If anyone else wants a copy, e-mail me at goldsteinm52@gmail.com.
I hope these are helpful.

Pxxxxxx, if you would like specific guidance and/or coaching please also feel free to contact me directly.

Michael

Arch's suggestions on how clinicians can best partner with patients

2009-09-30T22:04:00.002-04:00

Arch M, a wise and spunky 86 year old physician contiributor to the mpdchat group that I belong to, posted the following suggestions for clinicians on how to develop partnerships with patients (please note - I took the liberty of editing these a bit):

"Patients as partners ...a half dozen things patients expect that I learned at the bedside down through the years and not from the library and lecture room.

1. Treat patients and their families as social equals.

2. Never stand in the doorway to talk. Sit on a chair never on the side of the bed and always sit even if only for a microsecond. Look at the chart, but always do a bit of physical examination.

3. Be an advocate not an adversary, Discuss things that concern the > patient, don't relate the doc's doings. Explain, Explain, Explain and then Explain some more.

4. Make sure that the patient understands what your are doing for them.

5. Listen! Pay attention! Show concern! as if the patient is your brother or sister.

6. Say "don't know" if don't know. Don't hide our failures, share them openly. "

These are fabulous suggestions and fit with what I have learned from "experts" in the field of clinician-patient communication. During my career as a teacher of communication skills, I have been exposed to a many models that have attempted to capture the key ingredients for effective communication. Arch's list is as good as any!

What is interesting about Arch's "Satisfying Six" suggestions - is that the list contains many of the behaviors that have been shown in research studies to be associated with both patient satisfaction and therapeutic outcome!

After thinking about it, and comparing Arch's list with other lists that I have used in my teaching, here are a few other ideas for enhancing patient satisfaction, and improving the quality and outcomes of care:

- Explore the patient's agenda - ask what is most important for them to accomplish during a visit (helps to start out with this step!) Then of course, the clinician needs to give adequate time to meet the patient's agenda!

- Listen with empathy (This is just another way of stating what Arch wrote in #5 when he said "Listen" and "Show concern"). Being empathic and includes letting the person know that you are trying to understand their feelings and concerns by reflecting back the patients emotions.

- Take the time to check to for understanding. Explaining is necessary, but sometimes insufficient, to insure patient understanding, especially when there is a lot to share, and/or the patient is ill or upset

- Respect patient autonomy - offer options, share control, accept the patient's choice, even when you don't fully agree

- Create a safety net - make clear follow-up plans , refer to resources, offer multiple ways to get help

- Link patients to other patient - know about advocacy and support organizations, like mpdchat!!!

Another link to a Myeloproliferative Support Group

2009-09-13T11:58:00.002-04:00

Yet another online support group for people with myeloproliferative disorders has begun on a Google Group site.

Empathy is flowing....check it out!

http://groups.google.co.uk/group/mpdchat

Michael

Another MPD support list

2009-08-03T22:44:00.002-04:00

To correct an oversight, I have added a link to the archives of another fabulous myeloprofliferative disorders (MPD) online support listserve, the MPD-NET list, which is supported by ACOR, the Association of Cancer Online Resources. This list has been another wonderful source of information, advice and support for me.

The link to the list archives and information about joining the list is: http://listserv.acor.org/archives/mpd-net.html

Michael

My post to the MPD Support Listserve

2009-07-19T15:24:00.004-04:00

Below, I have copied and pasted a post I made to a myeloproliferative disorders (MPD) support listserve.

In 2005, I was diagnosed with polycythemia vera, a member of the MPD family of disorders. Like other chronic conditions, these disorders are associated with a variety of symptoms that effect quality of life and function. After my diagnosis, I found the list online and have been a regular reader and contributer since. The MPD Support list provides subscribers with an opportunity to ask questions, share knowledge and experience, learn about the latest research and clinical trials, and share support.

I, personally, have recieved invaluable information and suppoprt from other members of the MPD support list. I have also had an opportunity to offer my perspective as a physician-educator. Quite often, members of the list raise concerns or issues about their interactions with clinicians, especially their clinicians. In response to a post about a particularly problematic interaction witha doc, I shared the following post. Visit the listserve at http://listserv.aol.com/archives/mpd-support-l.html to gain insight into the benefits of such online support groups. See also the resources at the end of the post.

Here is my post from July, 2008:

Unfortunately, all too often, we feel unheard, or even worse, dismissed by physicians who don't understand or value the importance of OUR knowledge, expertise, experience regarding our illness. Docs are not only failing to hear, connect and respond to the needs of patients. As Axxxx pointed out, docs who fail to engage and enlist the patient in care miss, or fail to collect, key information that is essential to diagnosis and treatment planning. This problem not only leads to anger, dissatisfaction and other justifiable responses (such as Exxxx's), it also leads to poor clinical outcomes. As a patient, I have had my own share of problematic interactions with docs. On the other hand, I have had some good experiences as well. As a physician and teacher of other clinicians, my whole career has been dedicated to helping students and clinicians to appreciate the importance of using effective communication. We have a long way to go.... but I have not given up on trying.

So, Exxxx (and others)... we (clinicians)... need to hear you.... respect you... appreciate you.... and acknowledge your expertise... as well as respond to your needs. And we (clinicians) also need to take advantage of listserves like this one, as well as other ways in which patients can assist each other to address the problems and needs associated with having a chronic condition. Cxxxx's advice to bring a family member, or other companion, to health care visits is a wonderful idea. It helps to have another set of ears, and an advocate with us to increase the chances that we (patients) will be get needs met and questions addressed.

I have found a couple of wonderful organizations and programs that are striving to enhance patients' capacity to manage their health conditions, as well as their engagement in the process of improving care. See the websites for the Institute for Family Centered Care (www. familycenteredcare. org (http://www.familycenteredcare.org)) and New Health Partnerships (www.newhealthpartnerships.org (http://www.newhealthpartnerships.org)). I have had the pleasure of working closely with both of these organizations and can vouch for their value to patients, clinicians and health care systems. You will find lots of good resources. [Rxxxx.. there may be some ways that we can create links to these sites from our websites].I would love to have the opportunity to serve as a source of support of members of this list who would like help forging effective partnerships with their health care providers. However, the best advice will come not from me, but from other members of this community who can share the strategies that have worked for them. Feel free however to write to me on the list as well as offline (goldsteinm@aol.com)

Michael PV since 1/2006, asa, phlebotomy

Comment to a Paulene Chen Column

2009-07-18T12:39:00.004-04:00

The post below was originally made on a NYT Blog, "Do Doctors Have Time for Empathy?" (http://well.blogs.nytimes.com/2008/09/25/do-doctors-have-time-for-empathy/)
that was linked to a column written by Paulene Chen, MD. Dr. Chen, a transplant surgeon, has a wonderful column, Doctor and Patient, that appears regularly in the NYT. The original column was entitled, Taking Time for Empathy, http://www.nytimes.com/2008/09/26/health/chen25.html

I recommend reading Dr. Chen's columns, as well as the comments available for each column. See also the links listed at the end of my post.

Here is the post:

I hope this does not sound self-serving. My entire professional life as a physican, teacher, researcher, consultant has been devoted to promoting empathy and patient and family-centered care within the context of clinician-patient interactions. I am passionate about empathy.
So, soon after getting an e-mail with a link to Dr. Chen’s moving column, I eagerly read every word of every comment listed here. I found myself resonating with many comments….especially by those of you who were willing to share their stories about their experience as patients and family members.

As Drs. Back, Chen and others have noted in their comments, there is now a growing body of research indicating that empathy matters. Clinician empathy is associated with a range of outcomes including not only patient satisfaction and trust, but also follow-through with medical recommendations and improved health care status.

There is also a growing evidence base indicating that empathy can indeed by taught, at any level, even years after completing professional training. Training is necessary but not sufficient. Even though most schools have courses in clinician-patient communication - I used to help run one - the “hidden curriculum, which refers to negative role-modeling from less enlightened faculty can undermine more formal educational opportunities. As several physicians have mentioned on in this thread, it was the example of their mentors that had the most lasting impression on them. We need more caring, empathic medical faculty (like Drs. Back and Chen) who walk the walk, as well as talk the talk.

I could go on…but I rather read what you all are writing. Thanks so much for this opportunity to read and respond.

BTW, if anyone wants to learn about efforts to teach empathy and other core communication skills to health care professionals see: http://www.healthcarecomm.org/ and http://www.aachonline.org/.

Michael Goldstein
From Pauline Chen: Thank you, Dr. Goldstein, for all your important and hopeful work in this area and for including those links.— Michael Goldstein

My First Post

2009-07-11T09:41:00.001-04:00

With much trepidation, I write this first post to my own blog. I have to admit that, though I have been hesitant to create a blog, I have secretly wanted to have a public space to share my views.

For a long time, I have been been a passionate advocate for patient and family-centered health care and have spent the last 25 years trying to learn, and teach, skills that foster strong clinician-patient relationships. I have been very fortunate to have had many wonderful teachers, mentors, colleagues and patients who have helped me along the way. Though I believe I have become a pretty decent communicator, and some might say a very good teacher, I am humble enough to realize that I still have a lot to learn

In my efforts to enhance my own skills as a clinician and educator, I have hungrily sought out training, scoured the clinician-patient communication research literature, conducted some research myself and experimented with a variety of teaching techniques and formats. Relatively early on in my personal journey as a clinician-educator, I realized that the most basic skills were also the most important. If we can't communicate well, can't connect with patients on a personal level, can't understand the patient's concerns, how can we hope to help them heal, cope and recover?

The most basic skills are linked to what my colleagues and friends Steven Cole and Julian Bird have call the 3 functions, or tasks, of the clinician-patient encounter (which I have adapted a bit):

Eliciting the patient's story/problems/concerns/needs
Building a strong clinician-patient relationship
Developing a shared understanding of the problem/condition and collaborating on a plan for treatment and self-management

Each of these tasks can be accomplished though the use of specific skills....a long list of skills i might add, though some are more basic than others.

Empathy, in my humble opinion, is THE most important and powerful skill that clinicians can employ to enhance communication and forge strong healing relationships with patients and families. Empathy helps us to truly understand the experience of patients so we can ultimately help them. Through empathy, we strive to "stand in another's shoes" and see the world through their eyes. To be truly empathic this requires us to maintain an open heart and an open mind. This is not easy....and requires clinicians to be willing to spend the time it takes to understand, remain relentlessly curious and suspend all judgement. However, the payoff is immense....shared understanding, stronger relationships, and even better diagnosis and treatment outcomes.

So, I continue striving...and learning...and sharing...now here as well.

Michael