As health-care delivery continues to evolve, moving away from the “paternalistic” model of medicine, the role of the advanced practice professional (APP) in caring for patients with hematologic malignancies is becoming more complex. We are in the era of shared decision-making (SDM), in which APPs act as patient advocates, patient educators, and liaisons between the health-care team and the patient (and his or her caregivers and support team).
Although it is a relatively new concept, the collaborative, patient-centered SDM model has been widely adopted by clinicians and patients.1,2 The goal of this model is to make treatment decisions with the patient to achieve outcomes that matter most to the patient. Whether or not that goal is met can be determined by many factors, including the patients’ willingness to participate in treatment decisions and the medical institution’s approach to SDM.
While SDM is now considered to be the dominant model of health-care delivery,2 its development is not yet complete.
The Rise of the SDM Model
In the 1960s, the prevailing model of health-care delivery was the paternalistic model – patients would defer to doctors regarding any treatment decisions.
Later, health-care consumerism and health-care expenditures increased, and the patient-consumer started to say, “If I’m spending this much money for my health care, I should have a say in how I’m being treated.” That idea gave rise to the informed model in the 1970s. Though the physician was still making the treatment decisions, he or she spent more time educating the patient about the treatment. Adequately informed, the patient felt like part of the decision-making process.
By the early 2000s, the health-care system changed to create “the perfect storm” in which SDM could take hold: the number of treatment options expanded, physicians found themselves having to explain what those options were, and patients were spending more on their health care.
SDM also was bolstered by the implementation of the Affordable Care Act (ACA), which included a provision that encourages greater use of SDM “to facilitate collaborative processes between patients, caregivers or authorized representatives, and clinicians … and the incorporation of patient preferences and values into the medical plan.”3 The ACA’s SDM provision recognizes the value of patient decision aids and of involving informed patient preference when there is no clear clinical evidence to support one treatment option over another.
The SDM Building Blocks
The SDM model, published by Charles, et al in Social Science and Medicine in 1997, has four essential elements:4
- There are at least two participants: a health-care provider and a patient.
- Both parties share information.
- Both parties take steps to build consensus about the preferred treatment (medications, symptom management, side-effect management, etc.).
- The health-care provider and the patient must reach a mutual agreement about which treatment to implement.
The first three essential elements are easier to attain than the last, but that mutual agreement is central to the SDM philosophy. In fact, preliminary evidence has shown that when patients are actively involved in the decision-making process and are able to reach mutual agreement with their health-care providers, their treatment adherence, satisfaction levels, psychological well-being, and outcomes all improve.5
Unfortunately, the last piece of the SDM puzzle is often overlooked. APPs and physicians may make the mistake of assuming that the patient has automatically agreed to the treatment plan once he or she leaves the clinic. We need to be deliberate, though, in explicitly asking the patient whether he or she really understands and agrees with the treatment plan.
SDM and the APP
The number of treatment options available for our patients with hematologic malignancies may overwhelm them. Patients want to discuss those different options as they weigh what works best for them. That responsibility often lies with APPs.
Hematology/oncology APPs participating in SDM continuously strive to reach patient-driven treatment decisions, helping patients navigate the complexities of cancer treatment decisions and their own personal values. These types of decisions require active participation from both parties and preservation of patient autonomy.
In my experiences, that can often be as simple as allowing enough time for discussion and deliberation about the treatment choices. (Although, given time constraints, this is often easier said than done.) The APP also needs to set aside time to evaluate patients’ outcomes throughout the treatment course, asking, “Is the patient satisfied with the decisions we made? Are there any regrets?” Gathering information ahead of time to share in a multidisciplinary team meeting and providing the patient with patient decision aids or other educational materials can also be helpful.
It is difficult to consistently achieve that fourth element of SDM – more so than many health-care providers might think. Agreement should not be assumed – it should be explicitly verbalized.
Personally, I like to ask a simple, direct question like, “Could you tell me the treatment regimen that we have agreed on?” Or “What are the different chemotherapies that are part of the combination therapy we are going to initiate?” If the patient is able to verbalize and repeat the treatment regimen, I feel confident that he or she has a good understanding of the treatment and – the key to SDM – has agreed to the treatment plan.
Research from a number of government agencies, including the Agency for Healthcare Research and Quality (AHRQ), point to better short- and long-term outcomes when clinicians and patients engage in SDM.6 According to data from the AHRQ, SDM has multiple short-term benefits; chief among these is the increase in patients’ confidence in treatment decisions and trust in the health-care team. In addition, the patient empowerment inherent in the SDM process leads to a decrease in patient stress and anxiety related to cancer treatment decisions. In the long term, research also has shown that SDM leads to better treatment adherence, better quality of life, and longer-term remissions. (The AHRQ has also developed a five-step process, called the SHARE Approach, for SDM. See the SIDEBAR for more information.)
So, given the apparent benefits, why hasn’t SDM been adopted by health-care organizations on a larger scale?
Colleagues and I conducted a systematic review of 30 inpatient and outpatient oncology settings to help answer this question.7 Our interviews with APPs revealed several barriers to participation in SDM, which we categorized into seven main themes:
- Practice barriers: There is no standard, uniform approach to SDM, and the model varies within each institution.
- Patient barriers: Patients may not be emotionally or mentally ready to participate in treatment decision-making.
- Institutional policy barriers: Institutions may have enacted policies requiring physician supervision, as opposed to collaboration between the physician and the APP. Having undefined roles for APPs could also result in a lack of direction.
- Professional barriers: APPs may lack the professional training and experience to fully participate in SDM, and the professional culture they practice in may be non-conducive to participation.
- Scope of practice barriers: Regulations by state or federal laws may prohibit APPs from initiating new cancer therapy or practicing independently in cancer SDM.
- Insurance coverage as a barrier: When insurance payment for service is low, the APP is required to see more patients; time constraints and increased patient volume can limit SDM participation.
- Administration as a barrier: Full participation in SDM requires time, training, and resources that administration may not provide.
On the other hand, we found several promoters of SDM among the APPs we interviewed:
- Multidisciplinary team approach: APPs have increased participation in SDM when there is a consistent multidisciplinary or team approach in the practice.
- APPs having a voice during cancer SDM: When APPs perceive that their input is valued, they feel they are more likely to participate in cancer SDM.
- Increased knowledge level: APPs feel they can better participate in the SDM process when they know more about the disease and its treatment.
- Personal values: APPs who personally value participation in cancer SDM are more actively involved in the treatment decision-making process.
In our review of the centers’ relationships with SDM, a central theme emerged: To be truly effective, SDM has to be implemented and supported from the top down. It may require a culture change. It is not just the physician or the APP who needs to embrace SDM, but everybody in the health-care team – from administrators to practitioners.
Are we there yet? Not quite, but we are on the right track to continue our efforts to implement SDM. From what I’ve observed in practice, health-care organizations are participating in SDM to an extent, but it is not explicitly part of the organizations’ policies, culture, or – perhaps, most importantly – budget.
Many organizations are advocating for SDM, including the AHRQ, the Institute of Medicine, and the Department of Health and Human Services. We still have a way to go, though.
Hopefully, more education, training, and research will change the naysayers’ opinions.
- Legare F, Ratte S, Gravel K, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Educ Couns. 2008;73:526-35.
- Kane HL, Halperin MT, Squiers LB, et al. Implementing and evaluating shared decision making in oncology practice. CA Cancer J Clin. 2014;64:377-88.
Affordable Care Act, Section 5306.
- Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. 1997;44:681-92.
- Sandman L, Granger BB, Ekman I, Munthe C. Adherence, shared decision-making and patient autonomy. 2012;15:115-27.
- Agency for Healthcare Research and Quality. “The SHARE Approach.” Accessed June 7, 2016, from http://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/index.html.
- McCarter SP, Tariman JD, Spawn N, et al. Barriers and promoters to participation in the era of shared treatment decision-making. West J Nurs Res. 2016 May 18. [Epub ahead of print]
The Agency for Healthcare Research and Quality’s SHARE Approach is a five-step process for shared decision-making that includes exploring and comparing the benefits, harms, and risks of each option through meaningful dialogue about what matters most to the patient.
Seek your patient’s participation.
Help your patient explore and compare treatment options.
Assess your patient’s values and preferences.
Reach a decision with your patient.
Evaluate your patient’s decision.
Source: Agency for Healthcare Research and Quality. “The SHARE Approach.” Accessed June 7, 2016, from www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/index.html.
Free CME Summit on Myelodysplastic Syndromes
Improving MDS Outcomes from Diagnosis to Treatment: A Multidisciplinary Approach
There are many complexities associated with myelodysplastic syndromes (MDS) that a multispecialty team must address as a clinical-care unit. These complexities include obtaining adequate bone marrow specimens, identification and classification of MDS, the comorbidity rate of MDS patients, and the decision-making process for treatment. To address educational gaps associated with these complexities, the American Society for Clinical Pathology (ASCP), the American Society of Hematology (ASH), and the France Foundation have designed comprehensive MDS-directed educational summits that feature live events designed by world-class subject matter experts. Participants in these summits will actively engage in multidisciplinary, interactive small-group activities including case-based tumor board discussions and four break-out sessions on:
- The role of molecular testing
- Distinguishing morphologic mimics from MDS
- Assessing low or high grade MDS
- Applying new prognostic scoring to cytogenetics
Who should attend?
- Medical oncologists
- General pathologists
- Pathologists’ assistants
- Physician assistants
- Hematology and oncology nurse practitioners and physicians assistants
- Medical laboratory scientists
Dates and Locations
July 29, 2016
Held in conjunction with the ASCP Pathology Update Meeting
September 15, 2016
Held in conjunction with the ASH Meeting on Hematologic Malignancies
November 4, 2016
Hyatt Regency Austin