Some might describe the doctor-patient visit as a transaction: the patient comes with a problem and the physician gives her an answer. But does this fulfil the patient’s needs? Not always.
Asking the ICE (ideas, concerns, expectations) questions can help the doctor understand the patient’s point of view: ‘What do you think is going on?’ (ideas), ‘What are you most worried about?’ (concerns) and ‘What do you think I can do?’ (expectations)
Mostly, the patient wants a two-way relationship with her physician. She wants to work with the doctor and actively contribute to her care.
The patient is not always forthcoming though, and sometimes the physician wishes she could tell her to be more clear. The doctor is not a mind reader. The patient is supposed to prepare, be concise and accurate. The physician expects her to describe the nature of her problem: When did it start? What makes it better or worse? What contributes to it?
But where does the responsibility lie?
Sometimes, the patient is reluctant to share information: she does not want to interrupt, she might defer to the doctor’s expertise, or she might not be asked.
The physician plays a critical role as an educator, but the patient can also inform the doctor by asking direct questions. These can be a starting point for informed collaboration on diagnosis, treatment and prognosis.
The patient’s health problem is the fact. The rest are her feelings. Those feelings need to be explored and acknowledged: What keeps her awake at night? What is she angry about? What does she fear? What is the best way to support her?
The physician ought to address these concerns because they are legitimate and must be recognized whether or not they are justified (in the doctor’s opinion).
Empathy is the physician’s ability to understand the patient’s experience and supportively communicate this to her.
A 2011 analysis of empathy published in The Canadian Medical Association Journal cited a study of oncologists who were filmed speaking with their patients. Moments when the patient expressed an emotion like, ‘I’ve got nothing to look forward to,’ were tracked. The oncologists responded in an empathetic way only 22 per cent of the time during these “empathic opportunities”.
Empathy is a clinical skill. It gives the doctor the information she needs to provide AND show care.
Attunement or agreement?
Expectations are complex because they differ depending on the patient. Each person’s unique makeup affects her attitudes around every aspect of her life, including health care.
Some expectations concern treatment and prognosis: ‘What will happen to me next?’ Others relate to what the patient hopes will happen. Still others revolve around how the patient wants to be involved in decisions about her care.
Asking the patient, ‘What are your expectations of me as your physician?’ is a valuable starting point. By listening to the answers, the doctor can confirm that she is on the same page as the patient. The physician provides the best care when she understands, respects and helps manage these expectations.
A lot has been written about the patient’s ideas, concerns and expectations. A 2009 study in The British Journal of General Practice looked at 36 family doctors in Belgium. It aimed to discover how often ideas, concerns and expectations came up at the physician-patient encounter, and to determine any correlation between these questions and prescriptions.
When ideas, concerns and expectations were addressed, medication was prescribed less frequently. As the authors write, “Identifying and eliciting ICE components are key competencies related to shared decision-making”.
Understanding the patient’s responses to ideas, concerns and expectations facilitates attunement over agreement. Asking these questions says, ‘I hear you, I understand you and I respect what you are saying.’
The doctor will not always agree with the patient’s ideas, share her concerns or meet her expectations, but these questions help the physician and the patient understand each other.
Every year, thousands of families in the United States and Canada mourn the death of their babies.
About 26,000 pregnancies end in stillbirth in the U.S. each year, according to the American College of Obstetricians and Gynecologists. That’s about 1 in 160 pregnancies, and more than one-third of these deaths are never explained. In 2011 alone, 23,910 infants died before their first birthday.
In Canada, 2,818 babies were stillborn and 1,810 infants died within one year after birth in 2011.
While the numbers are staggering, often families grieve in silence.
Stigma surrounding childhood death prevents society from speaking about its devastating effects on parents and their families. While there is an open dialogue about some forms of death, this is often not the case for babies and infants who have passed away. What types of support are available to bereaved parents?
“A person [who] loses a partner is called a widow. A child who loses a parent is called an orphan. But there is no word to describe a parent [who] loses a child, because the loss is like no other,” [Unknown].
October 15th is Pregnancy and Infant Loss Awareness Day. This day is recognized nationally in the United States, and although it is honoured in parts of Canada (British Columbia, Manitoba, Saskatchewan and the Northwest Territories), this hasn’t made it to the federal level yet. Not only is October 15th a day for grieving families to come together, it is also a day for creating awareness for the wider public on how to help support those who have experienced this devastating loss.
Bereaved parents face tremendous challenges after the death of their baby. Their grief is a lifelong process. The grieving experience might change over time, but the child will always be missing and major milestones like the birth of a sibling can bring back painful memories of loss. Grieving parents and their families learn to live with their feelings of sadness and happiness simultaneously.
A general tendency in our society is to focus on the positives in life—expressed through statements such as “You can have another child” or “At least you did not get to know your child too well, which would have made it harder”—which can be inappropriate and hurtful.
Simply being present, listening to the parents, crying with them, allowing them to speak about their children and acknowledging the babies, the mother and her partner as parents and the birth experience (if applicable) may be what’s truly needed.
Taxpayers support tremendous amounts of research and development (R&D) through organizations like the National Institutes of Health (NIH) and other government agencies that go into funding medical research. Yet, this information is not readily available publically—although it’s easily accessible to doctors, it’s often extremely difficult for patients to find. In fact, the answers patients are looking for might not even exist.
For example, how would you find the best hospital for your child to have open-heart surgery? Despite the fact that a lot of information exists about specific heart defects some children are born with, outcomes across institutions are often not compared. Consider buying a car—would you get one without looking at Consumer Report ratings, or comparing prices across different dealers?
We effectively buy health care without the freedom to do comparison-shopping because huge variation amongst doctors and hospitals does exist. This applies not only to results, but also to procedures. Not having this data means that patients cannot make informed choices.
Culture of secrecy
How are patients heard? It is time to create more comparative care to allow patients to choose good outcomes. The system as it stands now expects patients to do the heavy lifting—to look for the best surgeons and hospitals by interviewing doctors and health care facilities they’re considering.
In 2013, the National Health Service (NHS) in the U.K. published the world’s first comparison data on surgeons, including everything from how many operations they perform, their outcomes and mortality rates. The Canadian Institute for Health Information (CIHI) does comparison reports on hospitals across the country, and is working on doing these for individual surgeons, but there is pushback.
While some hospitals and physicians are in favour of these changes, others prefer keeping their performance information private. Some doctors want to know how they compare to their colleagues, but not necessarily release this information to the general public.
However, access to this data should not be insider information where physicians know who is performing well and who is not, while leaving patients in the dark. The health care system should be based on transparency.
However, as is the case in the U.S., the Canadian medical system is based on hierarchy and autonomy, which are not conducive to transparency. It may not be sufficient even for doctors to look at their own numbers to determine how they’re doing since you need comparative data to understand the quality of care you’re providing.
But if patients cannot access this information, how would health care quality truly improve? Your Health System, an interactive website launched by CIHI in September 2014, which provides hospital and regional comparisons across 15 performance standards, is a big step towards health care transparency in Canada.
Pressure to be perfect
Dr. Teodor Grantcharov, a general surgeon at St. Michael’s Hospital and associate professor at the University of Toronto, is dedicated to transparency. He is currently developing the world’s first operating room black box, which makes his patients confident because they think it’s unlikely he has anything to hide if he’s willing to be open about his mistakes.
In fact, Dr. Grantcharov maintains a database of his procedures and outcomes. He has done this since he started practicing and knows exactly how many of each surgical procedure he’s performed as well as the number of patients who suffered complications. He can look back on his performance and understand what went wrong and why.
Practicing like this raises tough questions for him, but as professionals, should doctors not reflect on their own performance before their patients do? Physicians cannot improve if they don’t understand why something went wrong.
There is anxiety and concern among patients as well as a tremendous desire for transparency. This is critical because the doctor-patient relationship is based first and foremost on trust.
Medical professionals like Dr. Grantcharov are changing a culture that expects physicians to be perfect, an ideal that begins prior to medical school. Doctors need perfect grades to get into med school and then into a residency program. On top of that, they are expected to never make mistakes or forget anything. Consequently, those expectations have had a tremendous impact on quality improvement and implementing safety initiatives.
The culture of medicine may not favour transparency, and may even feel threatened by it, but we owe it to our patients and ourselves to provide the best health care practices.