Trust and communication between patients with terminal illness and their clinicians is crucial, yet can be undermined if patients feel that their hope for a cure—even a miracle—is dismissed by the medical staff.
To help overcome the understandable reluctance of clinicians to engage in talk of miracles, a group of cancer clinicians and a chaplain at Johns Hopkins Kimmel Cancer Center have developed a specific protocol designed to provide guidance in these challenging situations.
The protocol, called AMEN (affirm, meet, educate, no matter what), is a script that clinicians can use to navigate the often uncomfortable conversation that arises when patients or their families express the belief that a miracle may prolong life when confronted with the limits of medical intervention to do so.1
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According to Rhonda S. Cooper, MDiv, BSS, the Kimmel Cancer Center’s chaplain, the AMEN protocol is designed to allow “the provider to join the patient or family member as a fellow human being with hopes and aspirations” and to foster “a sense of trust and commitment to care.”
In some cases, additional treatment may be asked for, even though the clinician had judged that no further benefit can be derived. In others, the discussion may take place when the subject of transition to end-of-life care is introduced.
The AMEN protocol is based on the desire to maintain communication and to ensure that patients feel their hope for an unlikely outcome is heard and understood. In a survey, more than 50% of adults expressed the belief that God can intervene to save an individual when medical judgment has declared further treatment to be futile. In addition, 1 in 5 clinicians indicated that they believed God could reverse a hopeless outcome.1
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Ms. Cooper noted that there isn’t an expectation for “providers to become theologians or miracle experts,” but rather that they would “maintain [a] connection and respond to the patient’s invitation to journey with them through the experience.”
The goal is to reframe situations where the clinician might challenge the patient’s or family’s stated belief (“there are no miracles”) or avoid it by changing the subject to one where the clinician enhances communication by validating their belief and joining them in their “hope”—a nonreligious but universally human attribute.1
For AMEN to have a positive effect, first and foremost clinicians must be sincere and not use the protocol as a means to redirect the conversation back to their priorities. Earlier research has denoted several steps that help to engage patients and are equally applicable to the AMEN protocol.
These are (1) to use honest answers and (2) not to avoid patients’ feelings, use vague expressions, give ambiguous or indirect recommendations, or distort patients’ questions.2
A successful outcome, according to the AMEN protocol’s developers, is one where the clinician joins with and is actively engaging with the patient or family, allowing ongoing conversation in an atmosphere of openness and collaboration.1
The US Joint Commission for the Accreditation of Healthcare Organizations includes a basic assessment of patients’ spiritual beliefs in its mandates for hospitals and home health care agencies. Such an assessment might ask about a patient’s sources of strength and hope, their practice of prayer or their role in a religious community, the way in which they express spirituality, or the type of spiritual or religious support they desire.2
A short conversation about these factors at the outset of therapy may assure the patient that their oncology team is open to future conversation and has an interest in their hopes and fears.
People worldwide express spiritual beliefs, which often come to the forefront when confronted with mortal situations. Many see their spiritual beliefs as a source of strength, resilience, and hope, and naturally want to feel comfortable expressing or sharing their beliefs with clinicians.2 An Australian study published this year found that patients with cancer of all religious backgrounds expressed a desire for their oncologists to ask about and facilitate access to the patients’ source of spiritual support.
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While direct spiritual guidance from physicians was not the goal, patients desired a relationship and treatment approach that acknowledged their spiritual beliefs and allowed open discussion of their hopes and fears with clinicians.3
In addition, while cancer care relies heavily on technology and outcomes, oncology clinicians themselves often have personal religious or spiritual beliefs that contribute to the human side of patient care. Leaning heavily on the science of their professions, these clinicians may feel uncomfortable empathizing with patients on a spiritual level.2 Tools like the AMEN protocol may help to bridge that divide.
Open and honest communication between clinicians and patients can positively affect outcomes by supporting understanding, adherence, trust, and patient empowerment,4 while poor communication can lead to stress, clinician and patient frustration, and, in the worst cases, neglect of patients’ wishes.5
Despite this, clinicians often lack the training, time, or tools to accomplish the sensitive communication required by impending mortality. Patients’ specific religious hopes may complicate the open exchange of information and genuine care that clinicians feel for them. Clinician comments that are perceived as dismissive of patients’ religious beliefs “definitely will affect the trust relationship.
The goal of the conversation between provider and patient or family is to stay connected, not debate the possibility of miracles happening or not happening,” said Ms. Cooper. She and her colleagues at Johns Hopkins who implemented the AMEN protocol believe that their approach can help to foster the connection between the clinician and patient when a miracle may indeed be the only hope.
References
- Cooper RS, Ferguson A, Bodurtha JN, Smith TJ. AMEN in challenging conversations: bridging the gaps between faith, hope, and medicine. J Oncol Pract. 2014;10(4):e191-e195.
- Surbone A, Baider L. The spiritual dimension of cancer care. Crit Rev Oncol Hematol. 2010;73(3):228-235.
- Best M, Butow P, Olver I. Spiritual support of cancer patients and the role of the doctor. Support Care Cancer. 2014;22(5):1333-1339.
- Street RL Jr, Makoul G, Arora NK, Epstein RM. How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Educ Couns. 2009;74(3):295-301.
- Boyle DK, Miller PA, Forbes-Thompson SA. Communication and end-of-life care in the intensive care unit: patient, family, and clinician outcomes. Crit Care Nurs Q. 2005;28(4):302-316.
