[For readers who want to understand why this post is a little bit different see this short post. It also sheds a little more light about my background and thought process. Link:http://chemotherapycheerleader.com/?p=191 ]
Recently, The New Yorker magazine published a nice piece on the issues of “shared decision making” (or S.D.M), currently a hot topic in the medical community. The article delves into the personal experience of a doctor who becomes a patient and caregiver. (Link: http://www.newyorker.com/online/blogs/elements/2013/07/how-should-doctors-share-impossible-decisions-with-their-patients.html). I wish I could give justice to this complex topic, but that would require writing a book (and lots of research). Hopefully for now, we can settle on just exploring a couple of thoughts based on my own experiences. I enjoyed the Dr. Rosenbaum piece in the New Yorker quite a lot. It is well researched and gives solid psychological reasoning, all while provoking thought. I don’t intend to be as complete, but it is a fascinating area to me and as much as I think about the subject, there is much more to be learned. I would love for my colleagues (and patients from their perspective) to chime in through the comment section.
My first day as an inpatient an attending physician and a communication challenge.
Let me tell you about my first day as inpatient attending on the pediatric bone marrow transplant unit (2 years before my diagnosis of stage 4 cancer). First thing that morning around 6am, right after pre-rounding in the ICU, I was called to a multidisciplinary team meeting regarding one of my patients; let’s call him Tom (not his real name). Tom had faced lots of hurdles in his short life, including two bone marrow transplants and damaged kidneys, but at this time the issue was a heart related condition. Mom and Dad, like many who have been hospital with a sick child, were not only experts on their child but also experts on the disease that their child was facing. In these situations medical lingo can at times become so sophisticated that we must remind ourselves that we are not talking with a doctor. (It does, however, amaze me how fast information absorption can happen; I have cared for a number of toddlers who have named their teddy bears cisplatin or something similar.)
At this particular time communication between Tom’s family and the cardiology team was strained. Some of this stemmed from the parents comfort with their primary pediatric oncologist style of communication, and they were finding it difficult to adapt to a different style. They had felt empowered by their oncologist to make decisions. She was extremely thorough in educating her patient’s families so that they could participate in decisions. But the communication style of the cardiologist was of a different style, more focused on making recommendations. The father felt obligated to be involved in each decision and reacted quickly when he perceived that he was not given full participation at which time he physically disconnected one of his son’s IV heart medicines. This was an incredibly dangerous situation, but it also triggered the relationship between him and the cardiologist to go from bad to worse. At this time the dynamic was so negative that there was consideration of transferring Tom to another hospital with new cardiologists’ in order to develop a mutually trusting relationship, which is needed for a therapeutic relationship. The meeting which was meant to resolve these issues was brief and unsuccessful, a real crisis for everyone involved. The family was upset as there was no good option. Their son needed cardiology care that they were comfortable with, but transferring hospitals would mean leaving other doctors that had known Tom for years and for whom they trusted. Fortunately, this is unlike anything I had ever encountered before or since and it was certainly not a routine first day.
Given my first day excitement along with being young, highly motivated, and inflated ideas of my communication skills; I thought “hey, let me try to resolve this, it’s MY patient, I am the ATTENDING.” I was fairly descent communicator, had good relationships with my patients and their families, and I was enthusiastic for the challenge. Fortunately, I also had first timers luck. After talking with the family for a long time, the guidance of my mentor, and a meeting with the head of cardiology around 11pm that night, things did improve. Twenty four hours later, the family felt listened too and was growing more content. The family and the cardiologist were able to reset their interaction, so that they could start to build a mutual trusting relationship. Upon reflection, it is my opinion that this was a case where the shared medical decision making got to be too much and was not matched for the families needs.
One of the perks of practicing pediatric oncology is that we typically get the time to build strong relationships with our patients and their families. Because we focus on educating the family on the illness affecting them, we are able to enter a partnership and often make decisions together. There are subtle nuisances to how you have to balance this shared decision making. It needs to be tailored not only to the family but to the situation, and it often requires shifts in this balance over time. In this case the family’s introduction to medicine was with their pediatric oncologist. Later as their son’s situation grew more complicated, so did the list of specialists. The family was extremely competent, true experts on their son, but his medical case became so complicated that each and every decision became a burden. Please do not take this to mean that they thought their son was a burden. What I mean is that they felt extremely “stressed” to make decisions that would result in the “right” response. At the time I met them, they felt that we expected them to be involved in each decisions. They were constantly doing research trying to keep up with evolving situation. But even being the doctor with lots of training, I found each decision was difficult and often it was unclear which treatment would results in the best response. There are so many difficult decisions in oncology that I often find my self awake at night while on service pondering a patient, a decision. At times there is just no clear “right” answer but only a right outcome. A parent needs and wants to be educated; they are typically their child’s best advocate and the best observer of their child. As doctors we need their vigilance and input, but must remain cognizant that this can be extremely stressful.
[I discuss more about this uncertainty inherent in oncology here: http://chemotherapycheerleader.com/?p=159 . As I continue to write blog entries it is becoming clear how this idea of “uncertainty” is central to so many issues in oncology and I will need to dedicate a blog post to this in the future.]
This family naturally had come to a point, partly due to the degree of complexity of Tom’s care, where they wanted and needed more guidance. To help resolves things we made a pact together: I promised we would always keep them up-to-date and educate them on what was going on and their questions would be answered. We would also provide a single recommendation to be followed. We would always explain the reasoning behind that opinion and I assured them that each service involved in Tom’s care would due their best to provide the same level of communication. The other part of the bargain was that Tom’s parents could never again take matters into their own hands. Tom’s care was too difficult to manage for things like stopping his medicine to occur. What surprised me a little at the time was that there was almost a sigh of relief from the parents, because their burden had been released. Over the time I noticed their stress level went down, they spent less time doing research, and they had more time to support their son. Communication between them and all the other services also improved. Of course, most important was that their son, after a rocky course, got better and got back to his childhood.
The interesting thing to me at the time, was figuring out why the communication had gone wrong. It taught me that we must tailor our communication style with individual patients, doing our best to identify their needs. For both physicians and patients, it maybe preferable to choose the partnerships that come more naturally because of shared communication styles but neither in life or in the medical world do we always have this choice. We must be adaptable. Most communication failures will not be as large as the one with Tom’s parents, but every patient doctor relationship could benefit from exploration of the factors that guide how we talk with patients. Whether the doctor-patient relationship is a long-term or short-term will either drive or limit the amount of exploration that is possible.
Shared decision making means:
Building strong relationships with our patients through mutual trust
Empowering our patients to be able to make shared decisions through education
Acknowledging uncertainty in outcome creates a level of stress
Providing recommendations and explaining our medical reasoning behind
Modification of communication style for different families and different clinical situations
Finding a “right” BALANCE between recommendation and patient driven decisions
Expectation of changes in balance over time
Realizations that some decisions are false decisions
Acknowledging that it is our reasonability to accept the burden of a decision
For the most unfair decisions allowing the family to “blame” us
I want to discuss a few of these that were not illustrated above in more detail.
The really unfair decision: a couple of points as the apply to shared decision making
Shared decision making is a topical subject, but it is not new. One of the hardest questions, impossible in ways, is withdrawal of support and other end of life questions. Most of the time I have these conversations the parents already know that their child is dying, but to ask a parent to take away anything from a sick child, especially breath, is heart wrenching. No matter how clear it is medically, for a parent to be included, which they must be, is a difficulty I really cannot comprehend. I cannot get into all details of how to talk through this with a family (at least not in this post), but I want to share the part that relates to shared decision making.
Early on in this conversation, I acknowledge that up until this moment they have had decisions to make, but that many of those decisions were not really decisions. What I mean is that it wasn’t their decision that their child had cancer. Although I probably had them sign a large package of consents at the start of treatment, even chemotherapy was not really a decision as there is typically no alternative. Why else would anyone make a decision to give their child such treatment after we tell them in detail (informed consent) all the horrific possible complications, but because that is the only real choice?
At the time of a withdrawal of support or therapy talk, sometimes it is the first time the decision is really with the family. Either the life support machine continues or it does not. I acknowledge how unfair it is of me to ask for their decision because I see it is difficult and hard. I talk through all medical details of what is going on with their child and the expectations. I then say I will tell them what I recommend and why. I don’t do this with such firmness that they cannot go against my recommendation but I don’t waiver either. Part of my job is accepting this “burden”. A grieving mother doesn’t need the additional worry to keep her up at night wondering if she did the right thing. I would much rather that she “blames” me. Although the cancer is to blame, sometimes people just need somebody and not something. The papers for them to sign are at my side during this conversation, but they are turned over, so they do not have to have the words “natural death act” burning in their field of vision and distracting from our conversation. How ever long it takes to discuss, educate, provide support and answer questions, I am there. The family remains empowered. When it is time for them to make this decision, I let them make it. They either sign the papers or they not. Hopefully, I made an impossible situation a little bit easier by shifting some of the burden of the family thinking that is all in their hands on to me.
One final thought.
Being an oncologist and having the experience where another oncologist told me that I had 3 months to live (3 years ago now), I cannot end without addressing one line in the New Yorker article that hits home for me. “Do you want chemo and three months of life, or six weeks of life without the nausea and vomiting that chemo causes?” Come back to my site because in a couple of weeks I will discuss this in a full post. A preview of a couple of the points: (i) Chemotherapy cures many cancers. (ii) Do we every really ask a question like that? No not really (I will explain in post), but for the very difficult to treat cancers we do offer the option of therapy or no therapy. (iii) Oncologists are NOT psychics (I tell this to patients all the time). (iv) Whereas we might be able to accurately predict how a group of 100 patients will do, a patient is NOT a percentage and there is often no way to apply this to one patient. (v) While we are giving therapy for the purpose of cure it good to be a chemotherapy cheerleader.
Below is the best picture I have of communication. (Kenya 2012)