Empowered or Powerful? My Mini-Lesson from Jessie Gruman.

In a post on this blog over 3 years ago, Can Clinicians Empower Patients?, I noted that many who work in the area of patient engagement, including Jessie Gruman, the founder of the Center for Advancing Health, believe that clinicians can't empower patients, only patients can empower patients.

Though I understand the argument that patients already have substantial power and ultimately are already in control over whether to follow through with treatment and self-care, I believe that clinicians can take proactive steps to encourage patients to be more engaged in decision and care.

Why ask clinicians to "empower patients"? Though it is desirable for patients to take an active, and even the lead role in health care decisions and plans, many are reluctant to take charge or feel unprepared or unsure about how to play a more active role in self-care and self-management of chronic conditions. (See an article by Wendy Levinson and colleagues for data on patient preferences for involvement in decision making.)

Clinicians can help their patients understand the benefits of active involvement in decisions and self-care. Engaging patients in decisions and care is even more valuable when patients have serious life-threatening illnesses or chronic conditions that require ongoing self-management. Self-management can be quite challenging for any person with a single chronic condition and most people, particularly older adults, have multiple chronic conditions that they must manage simultaneously.

Self-management requires considerable expertise, effort, energy, expertise, coping, problem-solving and juggling. I have only 2 chronic conditions, yet I have spent a lot of time and energy on learning and actively managing my conditions.

Moreover, when clinicians actively include patients in the decision making and care, they are also "supporting autonomy", which has been recognized as an important determinant of motivation and subsequent behavior change. (Patrick & Williams, 2012) Supporting autonomy and building partnerships with patients are key elements of  Self-Determination Theory, Motivational Interviewing and models of Shared Decision Making.

In my teaching and writing, I have used the term, "empowering patients" as a way of helping clinicians consider inviting patients to participate in decisions and learn strategies that will increase their capacity to manage their conditions and stay well.

Last April, however, my views about using the term, empowering patients, changed forever. In April, I had the opportunity to chat briefly with Jessie Gruman just after she was awarded the inaugural Jessie Gruman Health Engagement Award at the Society of Behavioral Medicine (SBM) Annual Meeting in Philadelphia.  During the award ceremony, the SBM Board acknowledged and celebrated Jessie's  wisdom, guidance and lifetime contributions to the fields of both behavioral medicine and health engagement. See my previous EmpathyWorks post for more on Jessie's legacy.

Jessie's death in July, 2014 was a huge loss for all those who advocate for greater patient engagement in care, though her legacy lives on through the Center for AdvancingHealth.

Jessie has written passionately about the importance of understanding what it is like for patients to live with a chronic condition and what they need to be successful in coping with illness. In a blog post written at about the same time she received the SBM Health Engagement award, Jessie wrote:

"The idea that I should "manage" my chronic disease has always struck me as optimistic daffiness on the part of those who want me to do this...My image of having a serious chronic disease is of a cowboy riding a rodeo bull.....You call that management? No. But it gives you a pretty good idea of what it feels like to have a serious chronic disease. Most of us are just trying not to fall off the damn bull."

During our brief conversation at SBM, Jessie reminded me of the importance of viewing patients as the source of power for promoting health. She understood that, from the patient's perspective, the clinician can't empower a patient. Offering education, sharing decisions, and teaching self-management skills only go so far. Power comes not from the clinician, or a caregiver; it comes from within. Patients are already powerful, though they can become more prepared and skilled when they seek information, participate in decisions, prepare for visits, and learn and practice self-care skills.

Clinicians can empower health, not patients.  Patients are already powerful!

Jessie Gruman's Legacy

Last May, I wrote a post, Jessie Gruman, A True Champion for Patient Engagement, highlighting the extraordinary contributions that Jessie has made as a tireless advocate for this cause.

This week, after a long illness, Jessie died, generating both great sadness and wonderful tributes from those who had the good fortune to know her, work with her or benefit from her myriad contributions to the fields of patient engagement, health policy, behavioral medicine and public health.

I, too, am deeply saddened by this news. All those who knew her will all miss her wisdom, perspective, advocacy, and passion. 

I, personally, have been forever changed as a result of my interactions with Jessie. Jessie had a unique capacity to connect with others on a personal and emotional level, while also offering her input, feedback and perspective in a way that was precise and powerful.

One might say that Jessie's "way of being" epitomized effective engagement! 

As I noted in my post in May, the Jessie is the founder of the Center for Advancing Health, an organization which has developed, collected and disseminated fabulous resources and tools on patient engagement, health behavior, health policy and other related topics. See also Jessie's Prepared Patient Blog, where an In Memoriam statement has been posted from M. Chris Gibbons, MD, MPH, Chair of CFAH's Board of Trustees. You will also find many wonderful tributes from colleagues and respected leaders from the many fields that have been touched by Jessie's work.

Jessie's has also left us several several books, written from the patient perspective, in which she shares her insights as a patient, researcher, advocate, consultant and policy expert. Her books include:

Aftershock: When the Doctor Gives you - or Someone You Love - a Devastating Diagnosis(2007),
Cancer Survivorship: What I Wish I'd Known Earlier (2013)
Slow Leaks: Missed Opportunities to Encourage Our Engagement in Health Care (2013)A Year of Living Sickishly: A Patient Reflects (2013)

I am fortunate to have known and been impacted by Jessie. Her clear, articulate voice and pearls of wisdom will be with me forever. As a result, I am more committed than ever to furthering her vision of patient and health engagement.

Jessie Gruman: A True Champion for Patient Engagement

Jessie Gruman has been a outspoken and articulate advocate for people's engagement in health care for several decades. Actually, Jessie is more than an advocate. She is a visionary, a beacon, a once in a lifetime voice for millions of patients and caregivers who struggle with serious health care conditions.

Jessie is the founder and president of the Center for Advancing Health which, since 1992, has has focused people’s engagement in their health care from the patient perspective. Prior to founding CFAH, Jessie addressed health engagement, as well as the effects of behavior on health for the public sector (National Institutes of Health),  the voluntary health sector (American Cancer Society) and the private sector (AT&T).

In April, I had the opportunity to chat briefly with Jessie at the Society of Behavioral Medicine (SBM) Annual Meeting in Philadelphia. During this year's meeting, the SBM Board acknowledged and celebrated Jessie's lifetime contributions to health engagement by awarding her the inaugural Jessie Gruman Health Engagement Award.

In a moving brief ceremony, Jessie was acknowledged for her passionate and highly effective advocacy as well as for her wisdom, guidance  and contributions to the fields of both behavioral medicine and health engagement.

The Center for Advancing Health website is a great place to find research reviews, policy briefs, news, blogs and fabulous resources on patient and caregiver engagement, as well as other topical health care issues. If you visit, you will have a hard time leaving and you won't be able to avoid bookmarking at least 1 of the resources you will find there.

Be sure to sample Jessie's Prepared Patient Blog. Jessie makes frequent entries, often sharing stories about her own experiences coping with 5 life-threatening conditions. The Prepared Patient Blog also features guest bloggers, including leaders in the fields of health engagement, health policy, patient advocacy and health behavior change.

I also recommend Jessie's books, written from the patient perspective, chronically her journey as a patient and her insights as a researcher, advocate, consultant and policy expert. Her books include:

• Aftershock: When the Doctor Gives you - or Someone You Love - a Devastating Diagnosis (2007), 
• Cancer Survivorship: What I Wish I'd Known Earlier (2013)
• Slow Leaks: Missed Opportunities to Encourage Our Engagement in Health Care (2013)
• A Year of Living Sickishly: A Patient Reflects (2013) 

I will share more about Jessie, CFAH and The Prepared Patient Blog in upcoming posts.

Danielle Ofri's Reflections on Fear Triggered by Illness

Danielle Ofri's recent column on Slate, the online magazine, addresses the topic of fear that results from uncertainty and the risks associated with medical illnesses and procedures, even minor ones. Danielle shares the distress and acute fear she experienced as a mom when her young son required minor ear surgery. Even though, as a physician, she understood that the risk of the procedure was low, she nonetheless imagined the worst and became gripped with raw fear that  didn't abate till her son was fully recovered from his surgery.

Dr. Ofri's distress during that minor ordeal increased her awareness of the needs of her patients and their family for her  support, empathy and compassion during episodes of illness, especially when tough medical decisions need to be made. As Danielle points out, the process of shared decision making requires more than information sharing and collaboration. It also requires eliciting and responding to the emotions that are aroused by uncertainnty and risk. As she she beautifully writes, 

"When I sit with a patient now, deciding on a treatment, I still lay out the risks and benefits as systematically as I can. But then I take a moment to acknowledge the raw fear that cannot be assuaged by even the most convincing clinical data. This conversation can’t eliminate the necessary leap of faith. But at least there is some recognition of the stomach-plummeting sensation that occurs" when a decision has to be made.

Thank, Danielle for your enlightening column! I also highly recommend Dr. Ofri's well written memoirs, including her latest book, What Doctors Feel: How Emotions Affect the Practice of Medicine .

EmpathyWorks Has Had 10,000 Views!

On July 11, 2009, I wrote My First Post on EmpathyWorks (click on text to view).

In the 57 posts that have followed, I have shared links and comments about articles, books and research studies on empathy and related aspects of relationship building. Many of my EmpathyWorks posts were links to a column I wrote for MPNforum, an online magazine for people who, like myself, are self-managing, or helping a loved one manage a myeloproliferative neoplasm.

I have enjoyed writing and sharing these tidbits and hope they have provided readers with opportunities to become more aware of the ways in which empathy can be a tool for enhancing understanding and promoting compassion and caring, particularly in health care settings.

I look forward to continuing to continuing to write and reflect on the impact and value of empathy here.

It would be great to have more comments and dialogue with readers, so please feel free to share your thoughts or ideas, either in the comment section on the blog, or via e-mail at goldsteinm52@gmail.com.

Enjoy!

Michael

Don Berwick Urges UK's NHS to Emphasize Empathy

In a report commissioned by the British National Health Service (NHS) to address  concerns about recent slippage in NHS's patient safety and quality ratings, Dr. Donald Berwick  encouraged NHS leaders to focus on empathy, compassion and support for both patients and health care teams.

Helen Riess provides her perspective on the report in her blog post for The Huffington Post- http://m.huffpost.com/us/entry/3757483

Barbara Ficarra on the Value of Empathy

See Barbara Ficarra's post on her Huntington Post blog on the value of empathy.

The Joy of Throwing - New Post on MPNforum

See my latest column in the Summer Supplement to MPNforum. It's entitled the Joy of Throwing and chronicles my recent efforts to qualify for the National Senior Games in 2013. Go to: MPNforum

Graphic on Mind the Gap Emphasizes Impact of Clinician-Patient Communication

A new posting on the blog, Mind the Gap, by Stephen Wilkins, graphically shows the value of good clinician-patient communication. See: Mind the Gap Graphic.

I really like the quote he included from George Bernard Shaw, "The problem with communication is the illusion that it has occurred".

Shaw's quote reflects a key finding from research on clinician-patient communication: clinicians who have lover levels of skill are least likely to be aware of their skill deficit. For example, a review on the effectiveness of self-assessment of learner needs by I. Colthart and colleages (Medical Teacher, 30(2):124-45, 2008) found evidence that that the least competent are also the least able to self-assess accurately. This is why we can't count on clinician self-report and need to assess the competency of clinicians using methods that provide direct evidence of clinician communication skills, such as audio or videos of actual encounters,  evaluations of simulated encounters, assessment of patient experience. (See: Levinson et al.,  Health Aff (Millwood) 29(7): 1310-8.)

The good news is that the accuracy of self-assessment can be enhanced by feedback, particularly video and verbal feedback.