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.

References

  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. https://www.student.universiteitleiden.nl/binaries/content/assets/geneeskunde-lumc/halve-minoren/folder-patient-centred-care.pdf. [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.

Open Communication and Shared Decision-Making in Pharmacy

As pharmacists are now embedded in many healthcare teams with responsibilities for medication therapy management, teaching shared decision-making skills is essential in our pharmacy curriculum. In the 2nd year of a 4-year longitudinal evidence-based medicine (EBM) doctor of pharmacy school curriculum, student pharmacists are taught how to communicate evidence to patients and health care team members, and how to use a shared decision-making process with patients, using tools from the Mayo Clinic Shared Decision Making National Resource Center.  The following is a reflection of their experience, as future pharmacists, with the shared decision-making activity:

In a society where patients have a plethora of information at their fingertips, curiosity and involvement in self-care have become increasingly popular. However, with readily available information, particularly on the internet, both credible and deceptive, it is crucial that patients and health care providers work together in developing effective therapeutic plans. There are certain clinical scenarios that merit the implementation of swift, solitary decision-making by healthcare professionals. However, more often, there are cases where there is no definitive correct answer – situations in which priorities and values should be taken into consideration. We believe that the shared decision-making model is an optimal system, by which patients and health care providers can work together to formulate a clear picture of an effective action plan.

As doctor of pharmacy candidates at Western University of Health Sciences, we have had the valuable opportunity of engaging in progressive, interactive workshops that mimic the shared-decision making model. During one of these workshops, we were divided into teams and given hypothetical cases, modeling clinical scenarios. The goal of this workshop was for us to role-play as patients and pharmacists in a clinical setting to practice the shared decision making model and to learn how to effectively communicate with patients to discuss their risk, health history, and preferences to unite on healthcare decisions that are mutually agreed upon. This exercise was effective in shedding light onto the experience of a patient, as well as a practicing pharmacist in  shared-decision making.

For each of the two example cases, we were supplied with shared decision-making tools to assist us in formulating a decision for our patients’ therapy options. For the first case regarding diabetes management, we were exposed to the Diabetes Medication Choice decision aid cards (https://shareddecisions.mayoclinic.org/decision-aid-information/decision-aids-for-chronic-disease/diabetes-medication-management/), each of which focused on one topic and all pertinent information that may affect patients’ decisions, such as cost, lifestyle modifications, fear of needles and insulin therapy, blood sugar levels, side effect concerns, among other topics. In essence, these cards help  both the patient and healthcare provider discuss aspects that the patient valued in order to choose the most appropriate treatment option. For instance, the patient in this one case study did not have any cost limitations, was most interested in minimizing alterations to her daily routine and enhancing weight loss. We began looking at her options based on these topics, and moved our way to other topics based on her priority scale. We simultaneously integrated clinical expertise and scientific evidence into the equation in order to make the best possible decision.

Another tool we used was the online interactive tool for determining fracture risk, developed by the Mayo Clinic Shared Decision Making National Resource Center for our osteoporosis patient case. This was a great resource because  it allowed us to engage with our patients, as healthcare providers, by asking questions about their history, potential risk factors for developing osteoporosis, and preferences in their lifestyle or therapy. After we gathered all pertinent information, we input our patient’s specific data into the website, which then generated a user-friendly 100-face Cate’s plot, a visual aid that displays the patient’s personalized fracture risk with and without treatment, so that the patient could better understand the level of improvement offered by the potential treatment plan. Additionally, other tabs included tips on lifestyle modifications and other therapy options for patients to consider. This tool provided patients with a visual aid to better understand their risk for developing osteoporosis and the benefit of initiating osteoporosis therapy. Tools like these give healthcare providers, and patients alike, an opportunity to communicate with each other interactively and highlight the importance of EBM, especially when it comes to making important healthcare decisions. This allowed us another chance to interact with the patient and provide them with an outline of key points to focus on during the SDM session.

In essence, the shared decision-making model is the application of EBM. With the adoption of EBM in clincal practice, we believe that the SDM model will become organically integrated into most (if not all) health care practices. Participating in the SDM simulation workshop was very valuable as it fostered a patient-pharmacist interaction that remained focused on the patient’s priorities and values, while still catering to the pharmacist’s goals of achieving therapeutic efficacy. This is important because, based on our experience, it seems that patients respond best to information that is organized in a fashion they can appreciate and understand, without being clouded by hazy, complex information. This experience also allowed us to hone our clinical skills by showing us how to frame our questions and topics while effectively communicating evidence-based information to patients. We believe that due to their increased involvement in reaching a decision about the treatment plan, patients will be more likely to adhere to the designated agenda – as a proactive contributor to their healthcare plan, they will be more aware of the risks and benefits of adherence, as well as the risks of non-adherence. In situations where there is no definitive therapeutic plan, the patient and pharmacist can work together to figure out whether a treatment is necessary, and if so, which treatment option is most suitable. Ultimately, the SDM model will help us address clinical siutations that require a collaborative effort from both health care provider and patient.

Submitted by:

Doctor of Pharmacy Candidates, Western University of Health Sciences:
Ani Arsenyan, BSBA, Dara Nguyen, BS, Sona Sourenian, BS
EBM Curriculum Coordinator/Faculty and Professor, College of Pharmacy:
Cynthia Jackevicius, BScPhm, PharmD, MSc, BCPS-AQ Cardiology, FCSHP, FAHA, FCCP, FCCS

Shared Decision Making: from Buenos Aires to Lyon

Submitted by Paula Riganti

We were very thrilled to participate at the ISDM conference in Lyon. We were honored to had been invited to contribute in the Special ISDM ZEFQ Issue regarding the state of implementation of SDM in different countries. The development of SDM in our country is challenging, as Mariela Barani, our lead researcher, has discussed with other colleagues at the Sunday Workshop on national strategies for implementing SDM.

We are currently exploring the perceptions from our health professionals and patients regarding SDM in our setting. Our activities in this conference included the presentation of our latest research on trans-cultural adaptation of SDM measuring, a co-chairing of one of the oral sessions and three poster presentations about women’s perceptions on breast cancer screening, a validation of a search filter for studies on patient’s values and preferences, and health professionals and patients perceptions regarding participation in SDM in a low health literacy community.  It was a great opportunity to learn from other experiences and become enlightened with a wide variety of research studies.

We highlight the need for short validated tools in non-English speaking languages to aid the evaluation and improvement of clinical practice. We think that this conference will help us improve our initiative to locally empower patient-centered care research and implementation.

We also reflected with Victor Montori about SDM and financial incentives. It is on vogue worldwide today the use of financial incentives to boost SDM activities. But in practice, our perception is that those incentives only stimulate the simply registration of the use of a decision aid but does not guarantee that a SDM conversation has taken place between the patient and his caregiver. Victor agreed with us and also added other arguments for not incentivizing with money SDM: 1) SDM is good practice and that is enough to justify its introduction in clinical practice; 2) When you start paying for something, money will not last forever and after some time you will be in need of changing the financial incentive to other indicator or stop paying for it. And caregivers that have been payed for doing SDM until that moment will ask for money to continue doing it; 3) Once you start incentivize a SDM indicator, it will go up because doctors know that you are measuring it and they are being evaluated trough that indicator. After some time, when doctors forget about it, it will decline. This is called Hawthorne effect, also referred to as the observer effect, and is a type of reactivity in which individuals modify an aspect of their behavior in response to their awareness of being observed.

So we came to the conclusion that to incentivize SDM, we have to work on changing culture and make SDM a part of clinical practice.

Shared decision making in immigrant patients

Authors: Claudia C. Dobler, Gabriela Spencer-Bonilla, Michael R. Gionfriddo, Juan Pablo Brito

Shared decision making (SDM) has been widely advocated [1] and called the pinnacle of patient-centered care [2]. Translating this ideal into reality has proven challenging [3]. Several papers have identified barriers to the translation of SDM into practice [4-6]. A number of challenges arise in the context of intercultural and inter-linguistic SDM, which may be particularly pertinent to immigrant populations. Some of the challenges of SDM in an intercultural context have been summarized in a paper by Suurmond et al. [7]. These challenges include 1) language barriers, need for interpreters, 2) differences in health beliefs and concepts of illness between the patient and clinician, 3) differences in role expectations, e.g. an apparent preference for a paternalistic approach or desire for family-centered model of decision making, 4) consultation situation (e.g. time constraint and lack of culturally adapted patient information), and 5) low health literacy. Recently, our SDM Working group at Mayo discussed this article with the lens of applying the lessons to the development of an SDM tool for immigrant patients discussing preventive tuberculosis treatment with their clinicians.

A core component of SDM is communication. When clinicians and patients have to communicate through an interpreter, the work of SDM is complicated by: incorporating a third party into a sometimes intimate conversation, disruption of typical communication flow, lengthening of the medical encounter, and the telephone effect when interpreters engage in interpretation and curation of language rather than pure translation.  Interpreters, whether professional or lay, may make judgments about which information is important to convey to patients (and back to the clinician) and which information is not. Little is known about how this form of triadic communication affects the process of SDM and the extent to which interpreters’ knowledge, attitudes and beliefs affect SDM and the use of SDM tools in clinical encounters.  A recently published study that analyzed three consultations with an interpreter in which an Option Grid for osteoarthritis was used, found that discussions of treatment options were mainly between clinician and interpreter [8]. Patients had only minimal participation in the discussion with an average of four words articulated when they had an opportunity to speak, indicating that patients did not have a significant role in discussing treatment options.

In addition to differences in language, patients may have illness narratives [9] and health literacy which do not align with those of their clinicians. Providing care is also complicated by the fact that immigrants, especially those newly arrived in the destination country and with limited socio-economic resources, can have pressing material needs and concerns like providing for the daily needs of their families. A holistic approach to improving health and well-being must also take into account each patient’s context in the decision making process.

A single solution will not address all of these barriers, and more research is needed to determine the effectiveness of available interventions. For conversations that require interpreters, more research is needed around the dynamics of these triadic conversations as well as strategies for facilitating SDM in this context. For example, future research in this area could evaluate the effect of academic detailing (on SDM and the use of encounter decision aids), or training of interpreters on using SDM during the clinical encounter. Testing whether this could be achieved with interpreters working over the phone has the potential for widespread implementation.  Research is also required to find models of SDM that do not only facilitate collaborative deliberation between two individuals (the patient and the clinician), but facilitate the inclusion of family members and carers into the decision making process. To adapt to cultural differences, group education classes or shared visits in addition to individual encounters may help create a cohesive narrative between patients and clinicians. This strategy is currently being implemented by one of our collaborators in China. As many cultures have a family-centered model of decision making, patients’ families could be integrated into these group classes as well.

At times, SDM conversations will need to incorporate existential or practical needs that extend beyond a specific medical decision. Thus, components  of the ICAN tool, which can help prompt conversation about the patient’s context and situation including goals, priorities, capacity, and burden [10], may be a useful addition to a SDM intervention in this disease context.

While ongoing refugee crises throughout the world have highlighted the limitations of current approaches to SDM, these challenges exist to varying degrees in all encounters; we all have our own microcultures and idiosyncrasies.  Discovering how to communicate with one another in an effective, respectful, compassionate, and empathic manner is essential for the realization of the promises of patient-centered care.

We welcome the opportunity for continued conversations and collaborations. Please share your comments, stories and experiences in this area. Contact us at KERUNIT@mayo.edu.

References

  1. Frosch DL, Moulton BW, Wexler RM, Holmes-Rovner M, Volk RJ, Levin CA. Shared decision making in the United States: policy and implementation activity on multiple fronts. Z Evid Fortbild Qual Gesundhwes 2011: 105(4): 305-312.
  2. Barry MJ, Edgman-Levitan S. Shared decision making–pinnacle of patient-centered care. N Engl J Med 2012: 366(9): 780-781.
  3. Elwyn G, Scholl I, Tietbohl C, Mann M, Edwards AG, Clay C, Legare F, van der Weijden T, Lewis CL, Wexler RM, Frosch DL. “Many miles to go …”: a systematic review of the implementation of patient decision support interventions into routine clinical practice. BMC medical informatics and decision making 2013: 13 Suppl 2: S14.
  4. Legare F, Thompson-Leduc P. Twelve myths about shared decision making. Patient education and counseling 2014: 96(3): 281-286.
  5. Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient education and counseling 2014: 94(3): 291-309.
  6. Legare F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Aff (Millwood) 2013: 32(2): 276-284.
  7. Suurmond J, Seeleman C. Shared decision-making in an intercultural context. Barriers in the interaction between physicians and immigrant patients. Patient education and counseling 2006: 60(2): 253-259.
  8. Wood F, Phillips K, Edwards A, Elwyn G. Working with interpreters: The challenges of introducing Option Grid patient decision aids. Patient education and counseling 2017: 100(3): 456-464.
  9. Kleinman Arthur. The Illness Narratives: Suffering, Healing, And The Human Condition. Basic Books, 1988.
  10. Boehmer KR, Hargraves IG, Allen SV, Matthews MR, Maher C, Montori VM. Meaningful conversations in living with and treating chronic conditions: development of the ICAN discussion aid. BMC Health Serv Res 2016: 16(1): 514.

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!

JCphoto1

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

Communication is a challenge

Submitted by Jennifer Barton, M.D.

Communication is a challenge in my practice. As a rheumatologist in a busy, public hospital clinic, I had the privilege of caring for patients who spoke Spanish (a third), Cantonese (a third), Vietnamese, Russian, Lao, Tagalog, or English. Much can be conveyed in a smile or a warm handshake, but this is insufficient when  patient and doctor need to make decisions about a complex chronic condition like rheumatoid arthritis (RA). In particular, it was hard to identify how best to manage their conditions with one of  over a dozen available treatments.  In my toolbox, there was a gaping hole with no tools available to facilitate RA treatment conversations for this needy population.

Sitting at my desk on a Sunday afternoon drafting a grant proposal to create tools for shared decision making for diverse populations with RA, I came across a paper describing a clinical trial of a decision aid for diabetes. Diabetes and RA share many similarities:

  • both are chronic diseases,
  • both have many options for treatment with differing risks and benefits and costs, and
  • both require substantial patient self-management.

This decision aid was colorful, broken out into “issue” cards – like baseball cards (except not by player, or in this case by drug, but by feature), which I thought would be a great template for an RA decision aid, one that could be presented in different languages for patients with limited health literacy.

On a whim, I wrote to the corresponding author to see if I could learn more about the process and perhaps even use their tool as a template. Within hours, I received an enthusiastic reply from Victor Montori at the Mayo Clinic. This led to a phone call, the proposal, funding, and the work generated from fruitful collaboration and inspiration.

Patient Advisory Board

The journey from grant writing to project completion was filled with many adventures. I had never worked with designers or with patients in research. I looked forward to the meetings of our patient advisory board. They were full of laughter and shared  stories. Thanks to them I  learned about real life with RA. I got a chance to listen to the patients share experiences living with RA, getting tips, and finding value and support in one another. Working with patients was hands down the most satisfying and humbling part of the process for me.

Our most recent paper describes the results of a pilot study of 166 patients with RA from vulnerable populations (racial/ethnic minority, age >65, limited health literacy, immigrant status, non-English language) that tested a low literacy RA medication summary guide and RA Choice, the decision aid. We showed that the tools improved knowledge and reduced decisional conflict in this diverse population.

Now after all the hard work, and the results of the pilot study showing the tools worked in our patient population, we want to share the tools and improve conversations for patients with RA and their clinicians everywhere. RA is a chronic, disabling condition which leads to early mortality. Patients made vulnerable by how we deliver healthcare to them experience worse outcomes, and communication in these groups still needs work. Our hope is that with these tools and continued attention to the needs of all groups in the RA community, we can help reduce disparities and improve care for all patients with RA.

Jennifer Barton, MD
Associate Professor of Medicine, OHSU
Staff Rheumatologist, Portland VA Medical Center
Dr. Barton is an academic rheumatologist with a research focus on health communication and rheumatic diseases.

For more information on Rheumatoid Arthritis (RA) Choice, click here.

Shared decision making in adjuvant cancer treatment

Submitted by Marleen Kunneman

Involving patients in a shared decision making (SDM) process is increasingly the preferred approach to making healthcare decisions when more than one reasonable option is available, as is often the case in (neo-)adjuvant cancer treatment. In our recent studies, we aimed to gain insight in the extent to which the three key steps of SDM are followed during clinical encounters on (neo-)adjuvant cancer treatment. Our results showed that the steps of SDM are only followed to a limited extent. Below, we will describe our findings in more detail.

The first step in SDM is to create choice awareness, that is, to acknowledge that there is more than one sensible option available and that a decision needs to be made. We found that oncologists consistently omit the option of forgoing (neo-)adjuvant treatment during clinical encounters, and instead, focus on the one treatment strategy they recommend.1 In only 3 of the 100 encounters analysed, the oncologist indicated that a treatment decision still needed to be made. By that, oncologists miss a crucial opportunity to engage patients and facilitate SDM.

The second step in SDM is to discuss the possible treatment options in more detail. We showed that there is considerable variation between as well as within oncologists in information provision, both in the number and the type of benefits and harms that they addressed.2 The variation could not be explained by patient characteristics. This lack of clarity on which benefits and harms should be discussed during the clinical encounter hampers the process of SDM. For preoperative radiotherapy in rectal cancer, we were able to reach consensus among radiation oncologists and patients on a core list of topics that should always be addressed in the pre-treatment consultation.3 Of note, all items in this core list are long-term benefits and harms of treatment. We assessed congruence between the core list and routine clinical care, and found that patients receive information on fewer than half of the topics from the core list.3 In almost one in ten patients, none of the harms from the core list were addressed. This framing bias toward the beneficial effect of treatment was also found in another study on communication of probabilities.4 Oncologists virtually always mention probabilities of the beneficial effect of treatment, but probabilities of harms often go unmentioned. After the consultation, patients tended to overestimate the beneficial effect of treatment, and to underestimate the probability of harms. This suggests that many patients are overly optimistic and believe that there is no harm in undergoing (neo-)adjuvant treatment.

In the third step of SDM, the patient’s views and preferences should be discussed and considered. We found that less than half of the patients voice their values during the consultation, and only one in five patients voices a treatment preference.5 If patients’ values or treatment preferences had been addressed or if the oncologist had indicated that these were of importance when deciding about treatment, the patient felt that he or she was significantly more involved in the treatment decision-making process.

Our results show that in routine clinical care opportunities are missed to engage patients in a process of SDM. Small changes in doctor-patient communication during clinical encounters can facilitate patients’ involvement in deciding about treatment.

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Marleen Kunneman conducted her PhD research at the Leiden University Medical Center, under supervision of Prof. Anne Stiggelbout, Prof. Corrie Marijnen and Arwen Pieterse and is now a postdoctoral researcher at the Academic Medical Center, University of Amsterdam, the Netherlands. Her research is focused on doctor-patient communication during clinical encounters and shared decision making. Marleen has a Research Collaborator appointment at the Mayo Clinic, where she works with Prof. Victor Montori on assessing the impact of creating choice awareness as a prerequisite for more active patient involvement in clinical encounters.

References

  1. Kunneman M, Engelhardt EG, ten Hove FL, et al. Deciding about (neo-)adjuvant rectal and breast cancer treatment: Missed opportunities for shared decision making. Acta Oncol 2015;(epub ahead of print).
  2. Kunneman M, Marijnen CAM, Rozema T, et al. Decision consultations on preoperative radiotherapy for rectal cancer: Large variation in benefits and harms that are addressed. Br J Cancer. 2015;112:39-43.
  3. Kunneman M, Pieterse AH, Stiggelbout AM, Marijnen CAM. Which benefits and harms of preoperative radiotherapy should be addressed? A Delphi consensus study among rectal cancer patients and radiation oncologists. Radiother Oncol 2015;114:212-217.
  4. Kunneman M, Stiggelbout AM, Marijnen CAM, Pieterse AH. Probabilities of benefit and harms of preoperative radiotherapy for rectal cancer: What do radiation oncologists tell and what do patients understand? Patient Educ Couns. 2015;98:1092-1098.
  5. Kunneman M, Marijnen CA, Baas-Thijssen MC, et al. Considering patient values and treatment preferences enhances patient involvement in rectal cancer treatment decision making. Radiother Oncol 2015;(epub ahead of print).

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.

 References

  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.

For Empathic Decision Making


By Victor M Montori, Ian Hargraves, Annie LeBlanc

Policymakers fashionably prescribe shared decision making for patients who face fateful decisions. These patients have two or more medically reasonable courses of action that differ in important aspects. The extent to which these aspects differ in ways that matter to each individual patient justifies patient involvement in the decision-making process. Similarly, the extent to which clinicians can accurately predict the values and preferences of informed patients reduces the value of shared decision making. Only in circumstances where the distribution of patient preferences is very narrow can clinicians correctly deduct patient preferences (e.g., analgesics vs. no intervention for moderate to severe pain). This is often the case when the pros and cons of alternative courses of action are well known, their likelihood estimates are based on highly reliable research evidence, and difference between the benefits and the potential harms and inconveniences is large and clear. In such situations the distribution of patient preferences will be narrow enough that most clinicians can assume correctly what most patients will want. At the extreme, these decisions will seem purely technical, where the right course of action is apparent to those with a good understanding of the situation. This would include professionals with pertinent training. In situations that cannot be resolved by the application of technical knowledge, patients, when informed, will exhibit a range of preferences. It seems appropriate then that patients and clinicians partner to share information, deliberate, and arrive at a decision together. We call this process shared decision making.

Proponents of shared decision making assume that most clinicians and patients, when given the tools, time, and supportive setting necessary, will be able to implement shared decision making. Reality seems to behave differently: surveys suggest that patients are not universally inclined toward shared decision making, clinicians are often portrayed as barriers to this process, and environments have electronic medical records, phone calls, time pressures, competing demands, and noise that conspire to interfere with shared decision making. What’s going on if patients and clinicians aren’t adhering to the shared decision making prescribed on their behalf?

Our group, the KER UNIT, characterizes shared decision making as a conversation – an activity in which patients and clinicians turn with one another (the etymology of conversation—versare turn; con with). In conversation, the options with their attributes or issues are in dynamic interaction as the patient and clinician consider them and experimentally try them on. This highly interactive dynamic requires the active engagement and involvement of the patient and clinician. This turning-with of patients and clinician is the dance of shared decision making.

The clinician is used to contemplating the situations of patients and making tough decisions routinely; but for this patient, at this time, the task is anything but routine. Thus, it is natural to delegate to the more experienced and emotionally detached of the two the task of organizing the decision-making conversation. The clinician, leading the dance, will identify that a decision needs to be made, the relevant options and their relative desirable and undesirable features, and will invite the patient to consider these options and features. But, to what extent are patients willing and able to engage in deliberation?

We propose that the adequate way of answering this question is through empathy. In suggesting empathy we do not mean that clinicians should empathically divine the right decision for the patient; quite the opposite. We are suggesting that the co-creation of decision also involves the co-creation of the patient-clinician relationship and the conversational environment in which each decision is made. Empathy directs attention to the clinician’s active role in finding the right relationship and stance to join this patient at this time in decision making. Clinicians are trained and are expected to exhibit empathy when interviewing and examining patients, responding to patient concerns, and delivering bad news. The role of empathy in supporting decision making has not been fully discussed, to our knowledge. In this case, empathy requires attention to the situation of the patient and to the cues, verbal and nonverbal, the patient offers as the clinician invites the patient into the deliberative process. Some patients may be able to partner fully and co-create the decision; others may engage with the information, but delegate the rest of the tasks of deliberation and decision taking to the clinician. This is the expression of a preference that is being constructed on the spot (it follows that this preference cannot be adequately assessed with a survey tool, before the encounter and therefore out of context). The appropriate stance in the conversation is available to the clinician in subtle signs that the clinician can pick up through empathic attention to the patient. Focus on who the patient and clinician are, and can be, for each other in this conversation allows us to respect that the same patient may be willing to co-create one decision while preferring a lesser role for the next. The challenge for the clinician is to correctly respond, in real time, to these emerging preferences.

Shared decision-making tools produced for use during the clinical encounter need to account for this clinical task and be designed to support empathic decision making. When encounter tools offer too much information or script a step-by-step decision process, they may inadvertently limit the ability of the clinician to empathically guide the process. When tools are used in preparation for the visit, clinicians may assume that completion of the tool and associated worksheets signals that patients are fully engaged and ready to make decisions. That a tool should enable and support empathic decision making is not currently a requirement for their design of decision aids, or a metric for their impact.

In summary, shared decision making is one of an infinite set of ways in which patients and clinicians can engage in conversation about fateful decisions without a technically correct answer. To create the environment in which patients and clinicians co-create decisions, clinicians must actively invite and support patients in the process, empathically “reading” the patient to match their evolving preference for participation. Tools to support this process need to be designed to facilitate and not interfere with empathic decision making, and this may form the basis for new measures of decisional quality.

Thus, we are not just for shared decision making. We are for empathic decision making.

Increasing patient engagement with shared decision making

From Gaby Loria, medical market researcher for Software Advice

Physicians hoping to boost patient engagement in their practices can take heart in the findings of our recent survey report on shared decision making. In our report, 386 U.S. patients shared their thoughts on shared decision making (SDM), including how SDM can improve their experience at point of care and beyond.

Based on the survey, 68% of patient respondents reported that they wanted to make collaborative decisions with their healthcare providers. It is important to note not all medical decisions can or should be made jointly. However, in appropriate cases, SDM is emerging as an answer to patient demand for increased involvement in discussing treatment options.

As part of our survey, respondents watched a short video demonstration featuring Dr. Victor Montori of the Mayo Clinic’s KER Unit using his SDM decision aid cards with a patient. After viewing this video, 40% of the respondents said they have participated in a similar appointment with their provider, with 21% doing so in the past year. It’s encouraging to see such a significant percentage of patients experiencing SDM. However, these results also represent a call to action for advocates who would like to see the vast majority of practices implementing this collaborative patient-physician communication strategy.

Among respondents who had never participated in SDM with their provider, 47% said they would be “extremely” or “very likely” to switch to a provider who actively engages patients in decision making. These findings again reflect a substantial patient interest in the SDM treatment model. With the recent increase in healthcare legislation aimed at supporting and incentivizing value-based care measures like SDM, soon it may not be necessary for patients to leave their providers to get the care they want.

Since one of the primary objectives of SDM (and patient-centered care in general) is to help the patient feel more involved in treatment decisions, it makes sense that a combined 87% of the patients surveyed report that using an SDM model “significantly” or “somewhat” improves (or would improve) how involved they feel with their medical care.

When the patients were asked what—if anything—would discourage their participation in SDM appointments, 46% cited no concerns. This finding reflects a great deal of patient confidence in SDM. However, it is important to consider that 20% of respondents tell us they are concerned because they distrust their own decision making abilities. Dr. Montori points out that this lack of confidence is mostly due to patients having little or no involvement in past decision making sessions with healthcare providers. As more patients experience SDM, more should come to trust their own abilities to participate.

As SDM becomes more common in patient-physician interactions, priority should be placed not only on encouraging further adoption, but also on ensuring that physicians have the right tools for effective implementation. SDM decision aids, such as demonstration cards, are increasingly available for integration into digital patient charting systems like these, which help facilitate adoption of SDM into standard workflow processes. Taken as a whole, the report’s findings point to a bright future for shared decision-making, as this model continues to help improve the quality of treatment discussions and connections between patients and physicians.