Skilled Communications in Shared Decision Making

A Tool Kit for Health Care Providers and Advocates

The Patient Advocate Foundation and the National Patient Advocate Foundation are deeply committed to assuring that patients are active, informed participants in making decisions about their health care. Skilled communications are critical for patients, caregivers and their health care providers to achieve the goal of making shared decision making and co-creating health.

This Tool Kit builds on what we have learned from working with thousands of patients and caregivers to help them navigate the health care system and to advance person-centered medicine. It also draws on our experience as partners with community-based health care providers who have participated in our “Skilled Communications in Health Care Workshops.”

In those workshops, we talk about the importance of patients, caregivers–and providers–in telling their stories. We highlight the need for everyone involved in the health care decision making process to listen. We bring people from the community together to talk about the specific challenges, and the programs they have successfully implemented to improve communications in their settings.

This Tool Kit is a living document. We will update it, adding new content as we continue to work with our patients and community partners. We welcome your comments and contributions related to skilled communications and shared decision making, and your examples of best practices and approaches to improving the conversations between patients and their providers.

Learn More…

The Roadmap to Consumer Clarity in Health Care Decision Making

Skilled Communications Workshops

About National Patient Advocate Foundation

The National Patient (NPAF) is the advocacy affiliate of the Patient Advocate Foundation. We are dedicated to improving health care access, quality and affordability through policies, programs and practices that optimize the patient and caregiver experience and outcomes. We bring the patient voice to the forefront by articulating powerful individual stories and the collective needs of the community.

Patient Advocate Foundation

Patient Advocate Foundation (PAF) is a national organization that provides professional case management and assistance to patients facing serious, debilitating and chronic diseases. PAF case managers provide active liaison between patients and their doctors, employers, attorneys and health insurance companies, helping them navigate the system, identify and access resources, including providing financial assistance. PAF works with over 150,000 people a year to protect their access to high quality, affordable health care.

What are Skilled Communications?

Effective communications between patients and their health care teams are at the heart of shared decision making. While patients and providers strongly believe that these communications are important for both the quality of the experience and the outcomes, they all too often do not occur. Both patients and their health care providers need to take proactive steps to develop and utilize the skills that make discussions about treatment options and what matters to patients possible in a wide range of clinical settings at every critical point in the illness experience.

“For person-centered care, we need to recognize the asymmetry gaps in information. Physicians know the clinical information. Patients know everything about their lives and their values. Bridging the gap so that real conversations occur requires training, on both sides. It’s not a natural process for anybody.”

- Lewis Sandy, MD

“Nearly half the time when doctors say they discussed prognosis and likely outcomes with patient, their patients say there was no such conversation.”

- Dhruv Khullar, MD, New York Times, September 16, 2016

Bridging the Gap

Every exchange between a health care provider and a patient or caregiver involves communications. Effective communications require that both parties have and use skills that:

  • Allow the patient to understand his/her situation and the treatment options that are available at that time
  • Allow the provider to understand the patient’s values and goals as they apply to making treatment decisions
  • Allow the patient and provider to make treatment decisions together–to cocreate the health care plan that is medically appropriate and aligns with what matters to the patient.

Effective communications require:

  • Time and opportunity
  • Information that is timely, accessible and comprehensible
  • Effective use of tools and resources that provide this information
  • Values-based approaches with attention to individual circumstances and needs
  • Listening–by everyone involved in the conversation
  • Feedback–a mechanism to assess whether the patient has truly understood what is said and is able to make a decision about his/her care and treatment plan

Communications are:

  • Always two-way streets. Each conversation involves both giving and receiving information
  • Both verbal and non-verbal. We communicate both through what we say and what we convey with our body language and non-spoken cues.
  • Influenced by factors outside the parameters of the immediate conversation, such as anxiety about costs, or concerns about upsetting the doctor or cultural factors
  • Influenced by individual variation as to how involved a patient wants to be in his/her care and in the decision-making process
  • Influenced by the timing of the conversation. Patient perceptions and goals will change as they go through the illness process

Skilled communications require that physicians ask their patients what matters to them–and that patients and caregivers are willing and able to articulate their goals and values. This is not as complicated as it may sound.

  • Providers can develop a set of simple questions that patients can respond to at every critical point in the decision-making process.
  • Patients can prepare for appointments in advance by thinking about their goals for treatment and in life and how they want to express those to their health care providers.
  • Providers can help focus the conversation by giving patients information before an important appointment and patients can help assure they understand their options by reading and talking about information prior to the appointment.

“We have four questions literally attached to our ID badge that we ask every time we see a patient. What are you hoping for? What is most important to you? What are most worried about? What brings you joy? That tells you a lot about a patient.”

- Lillie Schockney, M.A.S.

“Physicians always worry that asking patients about their preferences or individual goals will lead to long discussions. The truth is that doesn’t happen. Asking a couple of simple questions can really clarify the process, and patients really appreciate that you asked what matters.”

- Yousuf Zafar, MD

Telling the Story

Stories are the heart of communications. Patients tell their stories when they talk about their illness, let their providers know what their goals are for treatment and for life, discuss what matters to them. Good story telling requires skills. In the patient provider exchange, both parties convey information and receive it. Both talk, both listen, and shared decision making arises from that reciprocal interaction. The process breaks down when one or both parties perceive that they are not being heard or that what they say does not matter.

Effective story telling helps assure that:

  • Patients are informed and educated
  • Providers understand what matters to the patient
  • Treatment goals are aligned with evidence-based medicine
  • Treatment decisions promote health and well-being

Patients can help this process by:

Preparing for appointments.

  •  Thinking in advance about what is most important for this clinical interaction
  • Educating themselves about their condition and their treatment options
  • Talking about their stories and their issues with a family member or friend—and taking someone with them to the appointment.
  • Writing down key issues or questions

Providers can help by:

Preparing for appointments.

  • Patients value providers who know them, with whom they feel they have a relationship.
  • Providing timely, usable information about the patient’s condition and options in advance of the appointment
  • Asking a couple of key questions about what matters to the patient
  • Utilizing the whole clinical team, including nurse practitioners, nurses, social workers and navigators, to learn about patient goals and values and bring those to the treatment plan.

Tom Workman

described being in the hospital with a tracheotomy and feeling very certain that he didn’t want to go home that way. He was not able to communicate that until one respiratory therapist understood his message and worked with him to determine that he could breathe on his own. “No one was answering my questions,” Workman said, “There was only one person I could communicate with, and as it turned out she got into trouble for what she did--but sometimes you have to break through the protocol.”

Meg Gaines

was diagnosed with advanced ovarian cancer when she was in her mid-thirties. She sought out a clinical trial ultimately saved her life, but she recalls asking her doctor about the potential cure rate for condition, and his response of “We don’t talk about cure rates.” Gaines heard that to mean that it was zero. “We were speaking different languages,” she said.

Working with Vulnerable and Culturally Diverse Populations

Virtually every patient, regardless of his or cultural background or health literacy, is capable of some level of shared decision making. It’s critical for providers to understand and act on the factors that can pose barriers to effective communications with specific populations. Skilled communications mean that providers:

  • Are educated and aware of and sensitive to the issues that affect shared decision making with specific populations. This requires training and accountability, and applies to all members of the provider team.
  • Provide information to all patients and caregivers that is accessible to that group. This means having materials at appropriate reading levels and in formats that people can use, whether it be print, video or digital.
  • Provide time and opportunity for patients and caregivers to express their concerns and values.
  • Whenever possible have providers who share the cultural and ethnic backgrounds of the patients for whom they are caring.

Mary Jackson Scroggins

told a different kind of story. After her diagnosis of ovarian cancer, she was discussing her side effects of treatment with her oncologist and told him that the neuropathy she was experiencing was “altering her gait.” The use of that somewhat technical word changed his attitude towards the conversation. He began to provide a higher level of more detailed information. “Until I used that one word, he was making assumptions about me. That one thing changed the conversation.”

“I know that when I treat patients from certain backgrounds, that I need to include the wider family and community group in my discussions. I’m not just talking to the individual patient. I’m talking to his mother, or her church group.”

- Craig Cole

Talking about Key Issues

This section includes patient and provider voices talking about the key issues they face, and identifying the factors that make for a positive and not so positive clinical encounter.

Tom and Elizabeth Ema talk about the Financial Impact of Treatment

Patient Advocate Foundation Case Managers Talk about How to Discuss the Costs of Care

Case History

Blyth: The Value of Anticipatory Guidance in Decision Making

Blyth’s daughter, Cameron, was diagnosed with TaySachs disease, a fatal, genetic condition that results in progressive disability, seizures and death, usually in early childhood. Blyth and her husband had no illusions about the prognosis, and in fact, were familiar with TaySachs because their nephew had been diagnosed with the same condition a year before Cameron. Blyth was able to work closely with Cameron’s pediatrician, who served as the primary care provider and coordinated her care. Together they made decisions about Cameron’s care including the most difficult ones related to when to stop actively treating her.

Shared decision making and palliative care from the beginning of the process were critical in helping Blyth and her husband cope with this illness, its progression, and Cameron’s eventual death. “We always knew we were focused on quality of life. I mean, honestly, with her diagnosis, there was no treatment and no cure, so it was only about quality of life. We had to decide what quality of life means to us, what we think it means to her, and does quality of life equate with length of life.

There were choices we made that were not just about comfort care, that were about duration of life. “The most important component (of the relationship with the doctor) was one of trust. Just absolute and total trust in him and his respect for us. We trusted him to guide us and listen to us. He understands disease and symptom management in a way we do not. At the same time, we were the ones who were in control of what defines quality of life for our daughter.

“Anticipatory guidance is really helpful. We knew all the bad things that were coming. We weren’t living in fear of the other shoe dropping because we knew that eventually seizures were going to happen. We knew that she would get pneumonia, that we would have to decide about putting a feeding tube in. It’s unpleasant to wait for the seizures to start, but at least you know what to expect and I think that was very helpful. “Through my creation of Courageous Parents Network (www.courageousparentsnetwork.org) I have become an advocate for parents of seriously ill children. I tell them they want to have a doctor or care team that they trust, that listens to them and communicates honestly. I tell them they want to find a community of others who can help them feel less alone, which is typically other parents. And, I recommend that early in their child’s illness, they get a good palliative care team in place to provide an extra layer of support as a lifeline to quality of life.”

The Value of Shared Decision Making

Keeping an Open Channel of Communication with the Caregiver

What Makes a Good Interaction?

The Patient Perspective

“I think doctors really have to know their patients and learn, learn who they are as a person. I know that is kind of hard in the short amount of time they have, but but there are ways to do it, to find out a little about their life. That’s really important because looking down the road, it helps them make decisions and present alternatives to the patient that are more in keeping with their thought process.” – Shannon, Stage IV thymus cancer.

“The best interactions I have had are when we are working together as a team. She’ll ask me what’s happened since our last appointment. I’ll tell her I read an interesting article and we’ll talk about it. I can’t specifically say she asks me what my goals are, but she asks me about my life, and she understands my most important goal is not to be in agony.” – Ann, Complex Regional Pain Syndrome

“When I was first diagnosed, I only wanted to see the doctor. I had stage IV cancer.My focus was completely on the clinical care, but after I had been in treatment for awhile, and I was responding to the therapy, I started to think more about my goals and what was important to me, and it was then I came to appreciate how important the nurse practitioner is. She knows what’s going on in my life and she has the time to ask me about what is happening with my kids or what we are planning to do on vacation. I realized the doctor and the NP are really a team.” – Rachel F. Stage IV breast cancer

Steps for Skilled Communications and Shared Decision Making

Summary: An Action Model for Skilled Communications

Steps for Skills Building and Education

Build a Foundation

  • Incorporate communications skills development training into educational curricula for physicians and all members of the healthcare team that provides essential scaffolding for care goals and shared decision-making discussions.
  • Develop education and clinical practice models and materials for patient-based care, including core questions and decision aids for both professionals and patients. These should include both standardized questions and questions customized to the specific disease or condition and utilize innovative digital platforms when possible.
  • Educate the public about the value of person-centered care through media outreach programs
  • Educate advocates about specific issues and skills related to person-centered care and communications with the healthcare team

Prepare for Person-Centered Care

  • Provide every patient diagnosed with a serious or chronic illness with information and assessment materials prior to the first appointment, including:

o    Basic information on the condition

o    Core questions to assess areas of concern, treatment goals, life issues that will impact decision making and basic attitudes and needs related to the shared decision-making process. This can be done digitally.

o    Basic information on self-advocacy and how best to communicate with the healthcare team on issues related to serious illness and quality of life

  • Provide the healthcare team with the results of the assessment process prior to the appointment
  • Add sections to patient portals that address key decision-making points, quality of life, patient preference and include feedback from both patients and providers

The Initial Appointment

  • Allow sufficient time in the first appointments to have a discussion on treatment options and the shared decision-making process
  • Introduce members of the healthcare team who will be involved in patient care and explain their roles
  • Identify members of the patient’s support and caregiving team
  • Ask core questions, based on the pre-appointment assessment, about what is important to the patient in making key treatment choices
  • Assess needs related to social, emotional and financial aspects of treatment as well as symptom management.
  • Provide a summary of decisions made to the patient that forms the basis for an ongoing personalized care plan. Document these decisions on the patient portal when possible.
  • Provide patients and caregivers with an opportunity to evaluate the process and outcomes of the appointment. This can be done digitally with a few standardized questions.

The Changing Landscape of Chronic or Serious Illness

  • Identify key decision-making points for specific conditions and individual patients.
  • Build relationships that allow providers to know their patients and understand their goals and values. While physicians need to play a central role in this process, other providers, including nurse practitioners, nurses and social workers are critical to establishing and nurturing these relationships with patients and caregivers.
  • Reassess patient goals and preferences at each key decision point using standardized core questions as well as discussion personalized to the individual patient. Document outcomes using standardized platforms.
  • Review and update the personalized care plan at each critical step or decision point.
  • Provide patients with ongoing opportunities to assess their experience and improve communications with their healthcare team. This can be done through short digital assessments, patient portals, navigators and when indicated, discussions with providers.
  • Develop feedback loops and triggers to alert healthcare providers to issues that require intervention or additional discussion.

 

NPAF is committed to advancing person-centered care and will continue to update and expand this site as we move forward with our work in this critical area.