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

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

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?

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

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

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!

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

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