B: Build a foundation of trust and respect.
U: Understand what the patient knows about the medication.
I: Inform the patient of evidence-based information regarding the medication.
L: Listen to the patient's goals and expectations.
D: Develop a plan of care in collaboration with the patient, family, and interdisciplinary team. The five BUILD components are part of an ongoing, collaborative communication process between the patient, family, and hospice team (Figure 1).
Appropriate Medication Use at End of Life
As the patient's medication profile is reviewed, the hospice clinician can assist the patient and family in making decisions about which medications are providing benefit and contributing to quality of life. Conversely, the clinician must be alert to medications that may be contributing to problematic symptoms, causing adverse effects, or simply no longer have a beneficial role at end of life. The interdisciplinary team can serve as a resource for the clinician who is not experienced or confident in discussing medication appropriateness at end of life. The team meeting is just one opportunity for learning from other team members including nurses, pharmacists, and physicians. Clinicians who do not attend team meetings, such as admission or on-call staff, must be offered the opportunity to seek the input and expertise of these co-workers. Knowledge sharing about appropriate end-of-life medication use can happen between clinicians, hospice team members, and the patient or family. This process facilitates informed decisions about medication use that is driven by the patient's goals of care and evidence-based medicine.
A patient who is taking warfarin for atrial fibrillation will be at increased risk for adverse effects at end of life. As the patient declines, the prothombin time/international normalized ratio (PT/INR) may become difficult to regulate, the patient's risk of falling increases and problematic bleeding can result. Before speaking to the patient and family, the hospice nurse may want to discuss the risks and benefits of continuing warfarin with the interdisciplinary team as well as other pharmacologic interventions. Knowing evidence-based information regarding stroke risk from atrial fibrillation without anticoagulation therapy is essential to balancing these therapeutic benefits and risks. If antiplatelet therapy is deemed necessary, considering a change to aspirin may be an option for the patient to lower the risk of bleeding and eliminate the need for frequent blood draws for PT/INR monitoring.
Understanding the Environment
Discussing medication discontinuation with patients at end of life can be a difficult task. Patients may develop a sense of abandonment or loss of hope. Communication and collaboration with the patient's attending physician and conversation with the patient about what provides comfort may lessen these feelings. Whenever possible, these conversations should include both the patient and the family or caregiver support system. However, because of cognitive impairment or altered level of consciousness, conversations sometimes must take place with the caregiver or the legal decision maker but keep the patient's documented wishes in mind.
Logical times for these conversations include both admission to hospice and during routine homecare visits. Discussions may be planned or impromptu. Impromptu conversations may result from a window of opportunity in which the patient or caregiver acknowledges a change in medication effectiveness or a change in the patient's condition. The skilled clinician is always alert to these windows of opportunity, and is able to evaluate appropriateness of continuing the medication. In addition, role-playing these conversations between members of the hospice team will help prepare the clinician for the discussion, as well as increase confidence in the process. (Norlander & McSteen, 2000).
First impressions are lasting ones. The initial meeting with a patient and family is a critical time in establishing trust and respect. A trusting relationship reduces fear and improves morale, increases compliance, and ultimately saves time (Kaye, 1995). Although hospice may be new to the patient and a trusting bond is just being formed, it is imperative to set the stage for establishing trust and respect as part of the admission process. Discontinuing or changing medications at the time of admission may not be necessary unless the patient's condition warrants immediate changes. However, initiating this planned discussion at the time of admission lays the foundation for future discussions. Introducing the idea that the patient's condition will change and therefore treatments will change is a first step. A window of opportunity may also present itself during the admission process as a patient or caregiver readily acknowledges changes in the patient's condition or functional status.
Scheduled visits are a logical time to discuss medication appropriateness. Again, these discussions may be planned by the clinician or they may occur as a result of a window of opportunity.
One of the clinician's visit goals is a focused conversation about medication appropriateness.
- Reviewing the patient's current medication profile at the time of admission;
- When providing the patient with a written list of medications at the time of admission or whenever there is a change;
- Before ordering refills of a medication that may have no therapeutic benefit in end-stage disease;
- During weekly review of the medication profile with the patient or caregiver; or
- While filling the patient's pill box.
Windows of Opportunity
The clinician is alert to cues from the patient and family signaling a conversation about medication changes would be accepted.
- “Mom is really having a hard time swallowing all of these medications. Are any available in a liquid?” Discussing the caregiver's goal in giving these medications should follow this comment.
- “Dad just doesn't seem to be himself anymore. He just doesn't seem to be as engaged as he used to be.” A discussion regarding medication appropriateness can then follow as part of the conversation about disease progression.
- “All day long I take pills. It's exhausting and I don't feel like eating.” This presents an opportunity to validate what the patient is experiencing and then discuss what quality of life means to the patient, including what medications may or may not be contributing to quality of life.
Creating a Window of Opportunity
The clinical guides a conversation about medications using open-ended questions, validating patient and family input, and facilitating collaboration.
- “I notice you take a lot of medications every day. Can you help me understand how this one is helping you? I'm wondering if they may be causing any side effects?”
- “Some of these medications are not covered by your hospice benefit. Because they are not related to your hospice diagnosis and are rather expensive, I'm wondering how that impacts you.”
B: Build a Foundation of Trust and Respect
Goal: Affirm the patient and caregiver; listen more than you talk. Validate their efforts and concerns. This is an opportunity to gain insights into cultural norms, spiritual practices, and family dynamics.
- “Thank you for taking the time to talk with me.”
- “You do a great job advocating for your mother.”
- “It sounds like this has been a very challenging time for you.”
U: Understand What the Patient and Caregiver Know About the Medication and the Disease Process
Goal: By asking open-ended questions, facilitate the patient and caregiver drawing their own conclusion that the medicine may no longer be effective or, at some point, will no longer be effective. Understanding what the patient knows about a medication, or what the individual expects from it, will allow the clinician to provide individualized, evidence-based information regarding the medication and how it impacts the disease process. By the time of hospice referral the patient likely has been subjected to many losses: no longer able to drive, prepare meals, or even bathe independently. Individuals may also be losing hope. This may create worry about the future and an attempt to hang onto anything familiar, including medications that they have taken for months or years. Address this “worry” as it will be a barrier in decision making (Back et al., 2009).
- “How is the medication helpful to you?”
- “What has the doctor told you about how this medicine works?”
- “How will you know when it's time to stop the medicine/change the medicine?”
- “Can you help me understand what is scary about stopping or changing this medication?”
- “How does your family deal with serious matters such as this?” (Back et al., 2009)
I: Inform the Patient and Caregiver of Evidence-Based Information About the Medication
Goal: Provide evidence-based information in a neutral manner by bridging the medical terminology and reasoning to the patient level.
- “Here's what we know about this medicine.”
- “As your disease progresses it may be useful to make some adjustments to your medications. What worked before may not work now.”
- “This medicine is useful for treating dementia. However, while it may slow the disease's progression it does not stop the progression nor cure the disease.”
- “There are other medications used to treat pain, shortness of breath, and anxiety that may be more effective for you.”
L: Listen to the Patient and Caregiver as They Share Their Goals and Expectations
Goal: Learn what is important to the patient/family. Take information the patient has shared about why he or she takes the medication and relate that to goals and expectations. If the patient indicates he or she is struggling with making a change, it may be helpful to share experiences. For those situations where the patient is unable to participate in the discussion or decision making, the patient's wishes should still be the focus, and not the wishes of the decision maker.
- “What are you hoping hospice can do for your mother?”
- “What is most important to you now? What are you hoping for?”
- “We can't reverse or cure your disease but there are many things we can do to provide comfort and quality of life. What does quality of life look like to you? What's important to you?”
- “It sounds like it's hard for you to make a decision about stopping this medicine. Can I share what my experiences and observations have been?” (Back et al., 2009)
- “Did your mother ever share her thoughts about what she would want when her dementia progressed and she could no longer speak for herself?” (Back et al., 2009)
D: Develop a Plan of Care in Collaboration With the Patient and Family
Goal: Being part of the process empowers the patient and caregiver and increases compliance with the plan. The patient and caregiver must realize they have choices. Work as a team for the benefit of the patient. Care goals should be patient-centered, measurable, and focused on comfort and quality of life. Acknowledge the attending physician's continued role in these decisions. Once the plan has been developed, ask the patient for feedback; make adjustments if needed. Demonstrate that the patient and family input has value. Revisiting the topic on an ongoing basis is often necessary. Let the patient know changes are part of this process.
- “Here are three choices: We can continue what we're doing and not make any changes; we could decrease the dose of medicine to 5mg daily; or, we could discontinue the medicine completely. Regardless of the decision, we'll monitor how she is doing and make any necessary adjustments.”
- “We work in collaboration with your doctor, who still guides your care and wants you to be comfortable.”
- “We will not do anything to hasten your mother's death but we also don't want to prolong the dying process. Our goal is to provide comfort and quality of life while allowing for a natural, peaceful death.”
- “You are not alone. We will walk this path with you. I'd like to come back on Tuesday and we can talk more about this.”
Recognize that discussions about letting go of medications are not easy. They are often avoided by other healthcare professionals. The BUILD model facilitates the ongoing process of communication between the hospice team, the patient and family, and any other providers assisting in the patient's care. Building these conversations with a foundation of trust and respect enables effective, compassionate collaboration between the hospice team and the patient.
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© 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins.
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