WALKING THE WALK

There are a lot of people around the country "talking the talk" about disclosure and apology when bad things happen in health care. You may have read in the Globe last week about a wrong site surgery at the Beth Israel Deaconess Medical Center. Check out CEO Paul Levy's blog for a great example of an organization that is "Walking the Walk" and trying to do the right thing.

LIVE GHOSTS IN THE ROOM

MITSS Support Team Member and Doctoral Student in Psychology, Erin O'Donnell, shares some reflections regarding her godson's hospitalization. Erin chronicles a very common problem with seemingly routine healthcare communication -- one that needs to be addressed in our quest for true patient-centered care:

On Wednesday morning, my 4 month old godson received a heart transplant in another state. Naturally, this is a big moment and gift beyond words. There is so much that can be said about the magic and miracle of organ donation; the amazing donor families, the science and the great treatment teams. However, I would like to comment on the something else.

Today, my friend, my godson’s mom, called me and said, “People say stupid things sometimes.” She went on to tell me about how the person she thinks was the anesthesiologist (the doctor didn’t adequately identify her role) introduced her name to my friend when entering her son’s room in the Cardiac Intensive Care Unit. The doctor then began talking to the other surgeon in the room as if my friend, the mother, were not in the room. This conversation included saying, “Most transplant babies are off the ventilator after 2 days.” Everyone in the room knew that this was 4 days after the transplant. It was an insensitive comment to make in front of the mother in that manner. The part that my friend found most rude was that the comment could wait until they left the room, since it was information all parties present already knew. When I expressed my irritation with the fact that the treatment team was talking as if she weren’t in the room, instead of integrating her into the team, my friend said that such discussions happen ALL THE TIME! How many times in our lives do people talk about us or our loved ones in front of us and pretend as if we don’t exist in the room? Is this a strange phenomenon that has become commonplace in the healthcare setting? How should a patient or family member confront such behavior without being seen as a problem patient? How did this kind of behavior originate in the first place? I wonder if it started as some sort of communication shortcut.

I do not believe either of the providers in the room were intentionally insensitive nor do I believe that they are callous people. This is a more widespread problem. It seems there are great barriers to overcome when discussing the importance of integrating the patient and family in their own treatment decisions, particularly when there are still providers that “forget” that they even exist at all.

Erin O'Donnell
MITSS Support Team Member

SO MUCH FOR COMPLIANCE!

Isn't Lake Winnipesaukee beautiful this time of year!

Above is a picture of my 15 year old son "tubing" this past weekend at the Lake. He stayed at a friend's summer home whose mother was nice enough to send me the picture.

If it weren't for the fact that he has a broken hand, was told to keep a splint on, and was cautioned NO SPORTS until he goes back to see the orthopedist next week, I might have been happy to see the picture. (I guess tubing and water skiing just don't come under the heading of SPORTS -- at least not to my son).

I am not only unhappy with him for not doing what he was told, but I realize that I should have called his friend's mom and explained to her about the injury. I trusted a teenager who, not uncommonly, considers himself "indestructible" to sit back on the sidelines and follow his doctor's orders. BIG MISTAKE!

The larger issue here is one of compliance. If patients and families are going to partner with their healthcare providers, then we need to adhere strictly to recommendations, medication regimens, and treatment plans. There can be defensible reasons for non-compliance (an error in communication; language difficulties; or, a literacy issue), but in my son's case "inconvenience and slight discomfort" just don't cut it. And, since he is a minor, it is my responsibility as a parent to make sure that my child's treatment plan is followed. As patients and family members, it is important to hold up our end of the bargain.

Winnie Tobin

A STEP IN THE RIGHT DIRECTION

Yesterday's Globe reported that the Massachusetts state government (both as an insurer and purchaser of health care) as well as Blue Cross and Blue Shield of Massachusetts have announced that that they will no longer pay for 28 types of medical errors defined as "Never Events" by the National Quality Forum. For a list of these types of events, click here.

This past November, the Massachusetts Hospital Association announced that all of its members had adopted a policy of not charging patients or insurers for nine of these types of events.

There are clearly significant details to be worked out, but we support any efforts on the part of the state and federal government, healthcare community, professional associations, and insurers to shift the focus to quality healthcare for the citizens of Massachusetts.

Navigating the River of Grief

We recently featured a blog entry about Ann Hood’s new book “Comfort.” MITSS Support Team Member, Erin O’Donnell, writes about the connection of grief to the work that we do at MITSS:

Feelings are much like waves, we can't stop them from coming but we can choose which one to surf. ~Jonatan Mårtensson

The walls we build around us to keep sadness out also keeps out the joy. ~Jim Rohn

To those of you who have lost a friend or family member to a medical error, the fact that a guest blogger on this site suggested a book about the raw emotions of grief might make complete sense. However, as we discuss in our Patient and Family Groups, grief and loss touch more than those that can say “This is the person I lost. Their name is ______.” Sometimes after an event, there are things much harder to name that are also lost and deserve to be grieved. Without trying to over generalize, many losses can fall into the following description:

-We have an idea about the way the world is and will be and the way that we will be in the world.

-Something happens and our idea won’t work out that way anymore.

-We have new knowledge that the world isn’t the way we thought it was and we may grieve the loss of our old idea, our old world, our old way of being in that world.

-We develop a new idea about the way the world is and will be and the way that we will be in the world, incorporating our new knowledge and grieving feelings.

Is it the fantasy of a birth that would be joyous and filled with happy memories and did not turn out that way that must be grieved, even if all people involved are healthy now? Is there a disability or a loss of health for a short or extended period of time that has created a longing for how life was supposed to be? For many people, the loss of trust in the healthcare profession after an event can be very jarring and disruptive, particularly when re-engaging in that system is important to our ongoing health. The emotional process that occurs after an event can disrupt the entire support system of friends and family, so perhaps lost were moments of celebrating holidays or everyday moments together as they used to be. The list of what can be felt as a loss feels infinite, because it depends on each person’s experience. Therefore, it is important to ask: What was lost?

When recognizing what was lost, it is also important to recognize: What is left? Be generous when answering this question. You may be surprised by how much is left if you allow yourself to let them in as positives in your life. Brainstorm with loved ones if you need to.

Although I haven’t read Hood’s book, “Comfort,” yet, the LA Times reviewer referred to it as the “anticlosure book.” The reviewer also added, “good riddance to a dumb idea,” in reference to the concept of closure after a loss. The description of this book certainly sounds like it is a RAW look at the grief process, which can be very validating. This may be useful to some people and may be too much emotion for others. However, it is true that those experiencing grief tend not to identify well with the concept of “closure.” Why? Because a loss is different than something lost. Something lost can be found again and feels resolved. A loss is permanent and can feel like losing a part of the self, which is not so easily resolvable.

So, what do we do with that loss? Well, there are lots of possibilities, and a blog cannot adequately address them all. However, one option is to try to find meaning in the loss that can serve your new ideas of the future. As in the process described above, when working toward figuring out how the world looks now and how you fit in it, you can choose how you plan to fit the loss into your new worldview so that if feels like it is doing honor to you and the loss. Viktor Frankl’s book, “Man’s Search for Meaning,” may be helpful to those interesting in venturing along this path.

There is no right or wrong way to grieve or feel loss. It is a common experience to all human beings, and it is very common among those touched by an adverse medical event. The way we express grief does become a problem when in interferes with our ability to function in the world (i.e. difficulty at work, struggling with relationships). During those times, it may be helpful to reach out for extra support. Because although grief is perhaps the most common of all human experiences, the path to rebuilding life is not always clear or easy to do without extra support.

Perhaps the most useful description of the grief process was told to me once by Kathleen Gilbert, PhD of Indiana University. She does grief research, including with parents who lost their child due to miscarriage. She said that once a man described it to her this way (quoted from memory):

Grief is like falling into a river.
Once you’re in it, you are in it and you never get out of it.
The river has rapids, whirlpools and mostly calm waters.
You can be floating along in the calm and suddenly be taken under by a whirlpool and feel like you’re drowning.
The next moment the water may be calm again or maybe you hit a rapid.

It is important to remember that, although you may never completely lose the feeling of the loss, the grief will come upon calm waters again.

Erin O’Donnell
MITSS Support Team Member
Doctoral Student- Massachusetts School of Professional Psychology

TIMELY AND ACCURATE -- TOO MUCH TO ASK?

Thank you for those who wrote in about the previous post regarding my son's baseball injury. Thank you, too, to everyone who read the blog and wished him well!

I thought I would take this opportunity to provide an update. I neglected to mention in my story that the x-ray was initially read by both the nurse practitioner and the radiologist as negative (no break). Fair enough -- we were relieved.

However, after a week or so of persistent pain and my son's complaints of not being able to play his guitar (a skill and passion very near and dear to his heavy metal rocker heart), we made an appointment to see an orthopedist. Well, it appears that there was, in fact, a break. He is now re-casted, unable to play baseball or the guitar!

So, I guess you could argue that my insistence on getting the x-ray read over the Memorial Day weekend didn't much matter -- it was read incorrectly anyway! It does appear, though, that there is no great harm done, and he seems to be healing nicely.

Winnie Tobin

Comfort: A Book on Grief

I just read about a new book called Comfort by Ann Hood that I'm planning to pick up. It's a memoir of the author's experience after her five year-old daughter died of a virulent strep infection. Though not specific to medical error (from what I've read it doesn't seem like the infection was hospital acquired) it seems to be an excellent book about grieving. Here's a review in the LA Times. The new book is not yet mentioned on Ann Hood's website, but it there is information on her related novel The Knitting Circle, a fictionalized account about how knitting helps a mother through a very similar grieving process. There's a nice video about that book on her books page. She also has a blog, and will be doing some readings in the New England area throughout the summer, including two this week in Massachusetts.