Many communication models have been developed to facilitate obtaining the patient/family narrative. We will summarize the Respectful Death Model that is based on best demonstrated practice from the medical communication literature.
- Step 1: Setting a safe context for learning the patient/family story
- Step 2: Soliciting the patient/family story
- Step 3: Confirming your understanding of the patient/family story
- Step 4: Developing a shared story among the patient/family/medical team the medical team and patient/family that integrates the patient and medical narratives.
- Step 5: Co-creating a care plan among the pt/family/medical team
Step 1: Creating a Safe Context for Learning the Patient/Family Story
Most patients and families are used to medical discussions focused on their disease with clinicians doing most of the talking. Setting a safe context where the patient and family are invited to share their story and do most of the talking takes mindful effort. Here is an example of a short introduction:
“You’re the expert on who you are and what’s important to you. The medical team and I are experts at taking care of a person who is seriously ill. Knowing how you see things and what’s important to you will make it a lot easier for us to take good care of you.”
Notice how this invitation emphasizes both the importance of knowing the patient/family story and that knowing their story will allow the medical team to provide better care. It provides a reason and motivation to share their personal story.
Step 2: Eliciting the Patient/Family Story
Once you have set a safe context for the palliative care discussion eliciting the patient's and family's "story" requires considerable shift from the traditional medical interview. First the patient and family are not used to having a discussion primarily requesting them to share their perspective. It is a discussion they are likely not expecting or prepared to have. There are several basic communication skills that need to be mastered to successfully facilitate narrative based discussions. The ones we will stress are:
- Using an Ask-Tell-Ask structure to the discussion and avoiding a Tell-Ask-Tell structure.
- Effective use of silence.
- Recognizing patient/family cues and using “continuers” to explore important cues more deeply
- Using NURSE statements to acknowledge emotional content and explore cues.
Step 2: Soliciting the Patient/Family Story Basic Communication Skills: Ask-Tell-Ask
The dominant communication structure in medical interactions is for the clinician to tell the patient their medical story and then ask him/her if she has any questions. Then the clinician answers any questions based on the medical story. This approach effectively focuses the discussion on the treatment of disease and strongly limits the opportunity to learn about the patient’s story (how the patient/family make sense or meaning out of their experience). The Ask-Tell-Ask approach totally inverts the process.
Before giving medical information the clinician explores what the patient already knows or wants to know. By asking the patient what they already know you get a sense of their language, metaphors and how he/she makes sense of his/her situation. In using the Ask-Tell-Ask approach it is important to listen carefully to the patient’s first response and use what you hear to ask questions that go deeper into what is being shared. Usually the patient’s first response is a superficial answer and probing questions that invite more reflection provide a much deeper understanding of the patient’s story.
It is important to remember that the patient’s story is a well organized narrative that is based on life long experience. To efficiently facilitate the sharing of a singular patient story questions that explore domains research has demonstrated as important include:
- What is your understanding of the situation you and your family face? (Understanding)
- Where do you draw strength to get through each day? (Coping)
- What are your past experiences in caring for others who are seriously ill? (Past experiences with illness)
- What are you hoping for? (Hopes)
- What are you concerned (worried) (afraid) of? (Fears)
- Who are the core “family” that will support you on your illness journey? (Important relationships)
- Is there anything else about who you are or what you believe that if we knew it would allows us to provide more respectful care?
Step 2: Soliciting the Patient/Family Story Basic Communication Skills: Ask-Tell-Ask: Effective Use of Silence
Research shows that the average physician can tolerate silence in a conversation for an average of 7 seconds. In narrative conversations patients often need much more time than a few seconds to adequately self reflect to answer questions such as “What are you hoping for?” or “What are they afraid of?"
In general periods of silence lasting 15-60 seconds can be powerful invitations for a patient to share deeper values and meaning. Remember that silence is not the absence of communication but the rich soil that allows patients to access memories and experiences to provide deeper answers to our questions.
Step 2: Soliciting the Patient/Family Story Basic Communication Skills: Ask-Tell-Ask: “Continuing” Important Cues
Research with patients and families living with life limiting, chronic illnesses has shown that patients and families will provide cues to clinicians that they have important personal and emotional concerns they wish to discuss. In the communication literature such moments are given a variety of names including "empathic moments," patient "cues" and patient "clues." This discussion will use the term patient cues. These moments arise when the patient or family member communicate verbally or non-verbally that they have concerns that possess highly emotional content.
Studies have looked at how often significant patient cues occur in clinical encounters with advanced cancer patients and their physicians . On average patient verbal cues occurs 2-3 times a visit. Physicians can respond to these cues with either "terminators" (verbal and/or non-verbal responses) that focus on biomedical facts and ignore the emotions being expressed or with "continuers" (verbal and/or non-verbal responses) that respond to the emotions being expressed and encourage the patient/family to share more about their concerns.
On average physicians use "terminators" 85-90% of the time when such cues occur, even when the patient/family offer repeated cues. Patient "cues" are windows of opportunity to explore the patient's story in more depth and share deeper emotional, existential and spiritual truths that underscore values and meanings.
Step 2: Soliciting the Patient/Family Story Basic Communication Skills: Ask-Tell-Ask: NURSE Statements:
"NURSE" statements in responding to patient "cues" have been found to effectively open up these windows of opportunity. Nurse statements acknowledge the patient's emotional concerns and create space for them to describe how they feel. "NURSE" is an acronym that stands for the following types of statements:
- Naming : One effective way of responding to a patient's emotional cues is to name them to yourself. This requires you to be "mindful" of your own emotional responses during the interview (develop an "observer self"). Once you have identified the emotion you can suggest to the patient this emotion exists. "It sounds like being a burden on your family is quite upsetting to you?" Be careful to only suggest what you have named. Most people don't want to be told how they feel but appreciate when you recognize how they feel.
- Understanding : Sensitively sharing your understanding of the difficult situation a patient/family is experiencing is another way of responding to cues. "I can't imagine how hard it must be for you to be receiving such a difficult diagnosis."
- Respecting : Acknowledging the depth of people's emotional feelings can be done both verbally and non-verbally. One important verbal way of showing respect is to praise a patient's coping skills. "I am impressed by the courage you have demonstrated by participating so fully in this difficult discussion."
- Supporting : Statements that demonstrate your commitment to provide care and support to the patient and family are of great value. Many a patient is worried about being abandoned by his/her providers if they should fail to improve or choose to stop active treatment. If truthful, statements that emphasize you will be taking care of the patient no matter what happens are important. "Our team is here to support you no matter what happens."
- Exploring : Such statements encourage the patient/family to tell you more about how they are feeling. Additionally providing empathy is another way of exploring the patient's cue. The best empathic statements link the "I" of the physician with the "you" of the patient. " I sense how upset you are at receiving this difficult news. Can you share more about how you are feeling right now?”
It is important to remember that not all patients are comfortable or willing to share their emotions. If you use continuers and get little response be respectful of patients limits and stay within the boundaries they set in sharing their story.
Step3: Confirming Your Understanding of the Patient/Family Story
Once you have solicited the patient/family story it is important to reflect the story back. This allows you to synthesize your understanding of the important values and goals expressed to assure you have accurately understood what the patient/family has shared. If not then the patient/family can correct any misunderstanding or more finely tune what they meant to say.
The process of reflecting back what you have heard allows for you to acknowledge your understanding of the story and the patient and family the opportunity to know they have been heard. This process builds a strong therapeutic relationship that includes shared values and goals.
Step 4: Developing a Shared Story Among the Patient/Family/Medical Team
Assist the patient and family in understanding what values and goals are shared by everyone patient, family and physician to live the best life possible. Stress what medical treatments are consistent with supporting these shared goals and which treatments are inconsistent with these shared goals. Patients rarely choose medical treatments as an end in themselves. They choose them as a way to live a meaningful life.
Assist the patient and family in understanding differences in values and goals among the patient, family and physician in how to live the best life possible; and use of medical treatments to support these differing values and goals. Patients and families are usually novices at living with serious illness while clinicians have an in depth understanding of what the risks and benefits of medical treatments might be. Code status and resuscitation are examples of where patients and physicians can differ significantly on the benefits of such aggressive treatments. Instead of sharing statistics on survival helping the patient and family understand how resuscitation helps them meet or not meet their goals is a more effective way of sharing benefits and burdens.
Assist everyone, patient, family and physician to integrate shared and differing values and goals into a common understanding of how to live the best life possible within the context of available medical and social resources.
Step 5: Co-Creating a Care Plan Among the Patient/Family/Medical team
Based upon as common an understanding as possible develop an individualized plan of care that supports:
- Mind : psychosocial/emotional issues of patient and family congruent with their values and goals within the context of their story and medical situation
- Body : biomedical concerns especially pain and other distressing symptoms congruent with their values and goals within the context of their story and medical situation
- Spirit : spiritual concerns of patient and family congruent with their values and goals within the context of their story and medical situation
Initial Interview with Wendy Using Standard Skills
Setting Context
Soliciting Story
Confirming Story
Initial Interview with Wendy Using Narrative Communication
Setting Context
Soliciting Story
Confirming Story
Conclusion
Current evidence shows that using a narrative approach to treating cancer patients as they approach the end of life results in improved outcomes and especially better quality of life and pain management. Using the respectful death model allows clinicians to integrate the patient/family story with the medical situation to co-create an individualized plan of care supporting mind, body and spirit. Specific communication skills to support a narrative approach include: Ask-Tell-Ask interview structure, effective use of silence, continuing important patient cues and use of NURSE statements.
