Thinking Beyond the Clinical Encounter

Work in shared decision making tends to focus on the clinical encounter.  Some research has focused on how to prepare patients and clinicians for a decision making encounter.  Other work has focused on how to facilitate conversations during an encounter or measuring the extent of shared decision making that occurs between patient and provider.  This focus on the clinical encounter likely has multiple origins.  First, much of the research in shared decision making has focused on decisions that are relatively discrete and time-bound, such as surgeries or screening tests.  Second, the clinical encounter is easy to access and assess.  It occurs at a specific time and place.  It involves a set group of individuals.  It has a beginning and an end.

Particularly in the setting of chronic disease, a singular focus on the clinical encounter limits our understanding of decision-making processes.  In fact, in chronic conditions decision making is often thought of as being more of a process than an event.  However, little research has investigated the details of this process.  We sought to more fully explore this process through a longitudinal qualitative study of parents of children with chronic conditions.1

In this study we followed parents (n=29 from 21 families) for 6-10 weeks following an index clinical encounter at which they discussed a treatment change for their child’s chronic condition. Parents were interviewed multiple times and asked to describe their decision process, including aspects of the process that occurred before the index encounter.  For all participants, the decision evolved over time, neither starting nor ending at the clinical encounter, and involved conversations with family members and/or friends who had not been present at the clinical encounter. Some parents described a slow, steady progression towards a decision while others either felt the decision occurred in a step-wise process or that some event led to an abrupt decision.  Regardless of how the decision evolved, parents felt their role in the decision-making process did not change over time.  Furthermore, after the decision was officially made parents continued to think about it and consider whether they had made the right decision.

The concerns and expectations parents had about treatment changed over the course time.  Often after deciding to start a new treatment the expectations shifted from focusing on symptom improvement to focusing on side-effect avoidance.  Similarly, parents’ emotions often fluctuated between worry and hope.  Some experienced relief from worry when their child did well on the new treatment while others shifted from worrying about their child’s symptoms to worrying about potential side effects.

By prospectively following parents, we demonstrated that, indeed, decision making in chronic disease is a process not an event.  It is a process that follows distinct patterns of evolution, includes numerous people and involves shifting expectations and emotions.  How then do we best support and foster shared decision making in this environment?  We need tools that capitalize on the fact that decision-making occurs over time.  Tools that help patients and families converse with clinicians and then help those patients and families converse with other people in their life.  We need to acknowledge that what happens in the clinical encounter is likely only a small part of the decision-making process, an important part but not the only part.  Finally, in the setting of chronic conditions we need to develop programs, tools and interventions that capitalize on chronicity.  Few people impacted by chronic conditions will make only one treatment decision during the course of their illness; rather chronic conditions involve a series of decisions.  By taking advantage of this repetition we may be able to help families become more skilled, engaged decision makers through learning and practicing skills at each decision making opportunity.

Submitted by Ellen A. Lipstein MD, MPH

Ellen A. Lipstein, MD, MPH

Ellen A. Lipstein MD, MPH, is a general pediatrician and health services researcher at Cincinnati Children’s. Dr. Lipstein’s research is focused on family-centered medical decision making. She is particularly interested in understanding and improving the ways parents and patients with chronic conditions collaborate with healthcare providers to make treatment decisions. Her current program of funded research uses both qualitative and quantitative methods to explore decisions about high-risk treatments, in which both the potential benefits and risks are significant. Additionally, Dr. Lipstein is a collaborator on several studies which aim to develop diverse methods for engaging patients and parents in decision making.


  1. Lipstein EA, Britto MT. Evolution of Pediatric Chronic Disease Treatment Decisions: A Qualitative, Longitudinal View of Parents’ Decision-Making Process. Med Decis Making. 2015.

Shared-decision making in cancer

By Khalid Benkhadra, M.D.

Recently, many studies have investigated the role patients want to play in the decision making process around how to manage their health.  This is of great importance, because while clinicians are experts in what works for a certain condition, patients are experts at what works for them. Shared decision making (SDM) is a mode of decision making where the expertise of both clinicians are respected and integrated into decision making through a process of collaborative deliberation..  Prior studies examining the role patients prefer when deciding on cancer treatment found that patients prefer to play a role in decisions, but that role varied from patient to patient1-3. To determine whether or not patient’s preference for SDM modified quality of care or physician communication Kehl et al4 conducted a survey. This survey was conducted among participants in the cancer care outcomes research and surveillance consortium (CanCORS).  Patients in this consortium were questioned about what their preferred role was when making cancer related treatment decisions and what actual role did they have in the decision making process around treatment for their cancer. They also reported on their perception of their overall quality of care.

Two thirds (67.8%) of patients reported that the overall quality of care they received was excellent and over half (55.8%) rated their physician’s communication highly. When they examined how these ratings correlated with the roles patients would prefer to play in the decision making process, they found that compared to patients who preferred share decisions patients who preferred that their physician control the decision making  were less likely to give top ratings to their physician. These patients also gave lower ratings of physician communication. The reasons behind these results are not clear and need further investigation.

Percentage of patients reporting excellent quality of care and high communication were both poorly calculated. For quality of care, results were reported by decisions; individual patient rating was not reported. For rating communication, analysis was restricted to patients who answered 3 out of 5 questions and answers were averaged.

In general, outcomes were very subjective and it was difficult to assess how strong the relationship between the patients answers and the actual encounter; there is a possibility a patient might rank an encounter low if he is not happy about a reason not related to the actual encounter. Besides, no information was reported about how educated tha patients were about SDM (and if yes, how much they were). Having a third party watching the encounter and assessing the communication would be a good addition as we can compare it with the patients response and see if both match (rather than taking only the patient’s response)

These findings in general suggest that providing information to patients with cancer and engaging them in decision making is valuable, even for patients who express a preference for a physician controlled decision making process.


  1. Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. Sep 1992;45(9):941-950.
  2. Keating NL, Guadagnoli E, Landrum MB, Borbas C, Weeks JC. Treatment decision making in early-stage breast cancer: should surgeons match patients’ desired level of involvement? J Clin Oncol. Mar 15 2002;20(6):1473-1479.
  3. Hawley ST, Lantz PM, Janz NK, et al. Factors associated with patient involvement in surgical treatment decision making for breast cancer. Patient Educ Couns. Mar 2007;65(3):387-395.
  4. Kehl KL, Landrum M, Arora NK, et al. Association of actual and preferred decision roles with patient-reported quality of care: Shared decision making in cancer care. JAMA Oncology. 2015;1(1):50-58.

The many paths to weight loss: Helping patients to find the treatment for obesity that fits their needs, preferences, and values

Submitted by Jennifer Clark, M.D.

Obesity is a complex condition that places a substantial burden on patients. Not only does excess weight gain increase one’s risk for many serious health issues, including coronary artery disease, obstructive sleep apnea, type 2 diabetes, stroke, and various malignancies, but obesity and its associated health problems also result in significant economic impact for individuals and the United States health care system as a whole. Additionally, the emotional impact of obesity should not be forgotten; studies suggest that obesity and depression often go hand-in-hand.  Obese individuals are at a significantly higher risk for major depression, and the burden of depression is often reduced with sustained excess weight loss.

Even as obesity continues to affect a greater number of this country’s adults, more and more treatment options are becoming available to assist patients with losing weight. However, these treatments involve a dizzying variety of risks, benefits, cost, and relative impact, making for a difficult decision for patients and a challenging discussion for physicians. The importance of this patient-physician interaction and the presence of shared decision making is apparent, as the treatment of obesity, like any other chronic disease, cannot be separated from the patient’s life and circumstances. Instead, it must be personalized and integrated into the context of one’s life.

The patient-physician conversation is an important setting for exploring how current evidence and knowledge may help patients clarify which treatment option makes intellectual, practical, and emotional sense for them.  Shared decision making (SDM) tools used during the clinical encounter support these vital conversations about diagnostic and treatment decisions.  Such tools have been devised for complex conditions including diabetes, Graves’ disease, and rheumatoid arthritis; however, no SDM tools have yet been developed to support conversations about the treatment of obesity. Therefore, I have decided to join the Knowledge and Evaluation Research Unit to work with the team in developing a SDM tool for obesity treatment.  Once created, it will facilitate patients’ engagement in the decision-making process to ensure that the chosen treatments are congruent with each patient’s values, preferences, and lifestyle.

I am very honored and eager to begin working with patients in this capacity as a compliment to my clinical training as a resident physician here at Mayo Rochester. It is my hope that in working on this project, patients will be more confident, active participants in choosing the right treatment for them based on current evidence. I know that I will learn so much from the process and from patients, and I couldn’t be more excited to be working with the KER Unit to further the cause for patient-centered outcomes and research!


Jennifer Clark is an Internal Medicine Resident at the Mayo Clinic.

Shared Decision Making in advanced dementia care – from a patient representative’s perspective

Every year, about 10 million people worldwide develop dementia – one person in every three seconds.1 Dementia is a progressive brain-disease for which no curative treatment is available. Patients with dementia endure cognitive decline and will eventually not be able to take care of themselves anymore. In the early stages of dementia, patients may still be able to participate in shared decision-making (SDM),2 but as the disease progresses, this may become increasingly challenging. To ensure that we provide patients with the best personalized healthcare also in these final phases of life, we need to know what is most important to them. A patient representative like a close family member or a caregiver can in such cases be asked to participate in the SDM process to design a care plan that fits the patient as best as possible.

As part of my medical training, I participated in a minor ‘Patient Centred Care’3 of the Leiden University Medical Center, (the Netherlands), focussing on self-management and SDM. For this 10-week course, I delved into the topic of SDM with patients with dementia. Here, I report on the interviews I had with two patient representatives, Richard* (63 years old, works as a nurse in a nursing home for people with dementia) and Helena* (48 years old). I wanted to explore the role of the doctor, the patient, the patient’s caregivers, and Advanced Care Plans (ACP’s) in SDM about decisions at the end of life for patients with dementia who are unable to participate in such conversations. An ACP is a document made by the patient and his family, possibly also together with his clinicians, in the early stages of dementia. It contains directions for clinicians and caregivers about a patient’s preferences regarding future healthcare when the person is no longer able to express his or her own preferences anymore. Of note, the clinical value of ACP’s is still questionable for practical and ethical reasons, such as how long it is valid and how to interpret a patient’s preferences when described situations lack details.

In Richard’s views, doctors should always take the patient’s values and preferences into account when deciding about care, even though this is challenging in advanced dementia. However, even in developed stages of dementia, patients can often express preferences in some way. Richard also stated that the family and caregivers have an important role as well: their involvement is crucial in ensuring that the opinion and preferences of the patient drive making decisions about care. They know the patient better than the doctor, and therefore they should advocate for what they think would be in the patient’s best interest. Although we must always aim to care for the patient in ways compatible to the patient’s ACP, Richard believes doctors are entitled to overrule the ACP if they believe it is better for the patient.

Helena, on the contrary, would prefer the clinician to take the lead in making decisions about care for patients with advanced dementia, not necessarily engaging family members and caregivers in a SDM process. Although they could act on behalf of the patient, the clinician should always follow the ACP. In other words, the ACP is superior to everyone’s opinion, even to the doctor’s opinion. The ACP has to be carried out at all times, since it is the most direct source of the patient’s opinion, according to Helena.

The patient representatives I talked to agreed that SDM in the setting of advanced dementia is complex and requires more effort from the doctor. More than in most other care settings, clear communication with the patient’s family members and caregivers, and considering with them what would be in the patient’s best interest, requires effort. As the relation with the patient may become increasingly difficult to maintain, developing a relation with the family members and caregivers becomes ever more important for clinicians in caring for the patient.

During the half minor, I realized that patient representatives may differ in their views on the value and implementation of SDM in advanced dementia. Just as for frail older patients without dementia,4 we need to find ways to ensure that all patients receive care that fits them as best as possible, even when they are unable to voice their preferences and participate in a SDM process. As patients with dementia might forget who they truly are, we must not forget them.

* To protect their privacy, I altered the names.

Submitted by: Hannah Leegwater, medical student at Leiden University Medical Center, the Netherlands.

I would like to acknowledge Marleen Kunneman, PhD and Arwen Pieterse, PhD for reviewing and editing this blog post.


  1. Prince MJ, Wimo A, Guerchet MM, Ali GC, Wu Y-T, Prina M. World Alzheimer report 2015 – the global impact of dementia: an analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International, 2015. 84 p.
  2. Van der Flier WM, Kunneman M, Bouwman FH, Petersen RC, Smets EMA. Diagnostic dilemmas in Alzheimer’s disease: room for shared decision making. Alzheimers Dement (N Y). 2017 May 9;3(3):301-304. DOI: 10.1016/j/trci.2017.08.008. eCollection 2017 Sep.
  3. Pieterse AH, Numans ME. Folder half minor Patient centred care. [Accessed 23-01-2018]
  4. Van de Pol MH, Fluit CR, Lagro J, Slaats YH, Olde Rikkert MG, Lagro-JanssenAL. Expert and patiënt consesnus on a dynamic model for shared decision-making in frail older patients. Patient Educ Couns. 2016 Jun;99(6):1069-1077. DOI: 10.1016/j.pec.2015.12.014. Epub 2015 Dec 28.

Decision aids that facilitate elements of shared decision making in chronic illnesses

Submitted by Thomas Wieringa

Shared decision making (SDM) is a patient-centered approach in which clinicians and patients work together to find and choose the best course of action for each patient’s particular situation [1]. This approach is pertinent to the care of patients with chronic conditions [2]. Six key elements of shared decision making can be identified [1-4]:

  1. situation diagnosis (understanding the patient’s situation and establishing the aspects require action)
  2. choice awareness (indicating that multiple options are available and highlighting the
  3. importance of the patient’s preferences in deciding on the course of action)
  4. option clarification (explaining the available options)
  5. discussion of harms and benefits (explaining the harms and benefits of each option)
  6. deliberation of patient preferences (discussing the preferences of the patient)
  7. making the decision (clinician and patient making together the decision)

Decision aids
SDM can be facilitated by decision aids that have been developed for use by clinicians and patients, either during or in preparation of the clinical encounter [5-7]. Decision aids can help patients choose an option that is congruent with their values, reduce the proportion of patients remaining undecided and/or who play a passive role in the decision-making process, and improve patient knowledge, decisional conflict, and patient-clinician communication [7-11].

The International Patient Decision Aid Standards (IPDAS) Collaboration developed a minimal set of standards for qualifying a tool as a decision aid, which require that a decision aid support all key elements but making the decision [12].

Systematic review
We conducted a systematic review to assess the extent to which decision aids support the six key SDM elements and how this relates to their impact.

We found 24 articles reporting on 23 RCTs of 20 DAs (10 DAs for cardiovascular disease, two DAs for respiratory diseases, and eight DAs for diabetes). With the exception of one, all studies have an unclear or high risk of bias for all outcomes assessed in this review. The option clarification element (included in 20 of 20 DAs; 100%) and the harms and benefits discussion (included in 18 of 20 DAs; 90%; unclear in two DAs) are the elements most commonly clearly included in the DAs. The other elements are less common and more uncertainty is present whether these elements are included, especially with regard to choice awareness (uncertain in 14 out of 20 DAs; 70%). All elements were clearly supported in four DAs (20%). We found no association between the presence of these elements and SDM outcomes.

Thus, despite the IPDAS minimal set of qualifying criteria, our systematic review showed that decision aids for cardiovascular diseases, chronic respiratory diseases, and diabetes mostly support the option clarification and the discussion of harms and benefits elements of SDM, while the other SDM elements are less often incorporated.

Future research
Possibly, some SDM elements may be left out of decision aids by design. This choice may depend on what features were thought most important by the developers (e.g., patient education, risk communication, preference elicitation, or patient empowerment). The importance of incorporation of SDM elements in decision aids may be situation-dependent, but the way this works is unclear. Therefore, future research should clarify this situation-dependence and eventually inform possible reconsideration of the IPDAS minimum standards for decision aid qualification. The relationship between the extent to which decision aids support SDM elements and outcomes is yet unknown and should be studied in future research as well.

The full paper was published in Systematic Reviews and can be found here:

Thomas Wieringa is a post-doc researcher at the department of Epidemiology at the University Medical Center Groningen (UMCG), the Netherlands. He did his PhD, focused on shared decision making and patient-reported outcomes in type 2 diabetes, at the VU University Medical Center. He visited and collaborated with the Knowledge and Evaluation Research (KER) Unit of the Mayo Clinic in the context of his PhD.


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  2. Montori VM, Gafni A, Charles C. A shared treatment decision-making approach between patients with chronic conditions and their clinicians: The case of diabetes. Health Expectations. 2006;9(1):25-36.
  3. Kunneman M, Engelhardt EG, Ten Hove FL, Marijnen CA, Portielje JE, Smets EM, et al. Deciding about (neo-) adjuvant rectal and breast cancer treatment: Missed opportunities for shared decision making. Acta Oncologica. 2016;55(2):134-9.
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  5. IPDAS Collaboration. What are patient decision aids? (2017). Accessed 30 Oct 2018.
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