Annals of Long-Term Care: Clinical Care and Aging. 2016;24(10):13-16.
Jamaica Hospital Medical Center, Queens, NY
Advance care planning (ACP) is a necessary yet difficult task for physicians and patients in the event of chronic or terminal illness, especially for older adults nearing the end of life. ACP can help “alleviate unnecessary suffering, improve quality of life,” and provide a better idea to patients and caregivers of the challenges to come.1 According to the Centers for Disease Control and Prevention (CDC), only about half of older adults aged 60 years or older have completed advance care directives, and only 65% of nursing home residents have one on record.1
Comprehensive ACP involves discussions of a patient’s present condition, disease trajectories, goals of care, and palliative care options. ACP is especially important for patients who prefer not to engage in aggressive or life-sustaining treatments, because the health system default is generally to sustain life using all available resources.1 Thus, not having a clearly written advance directive can result in care that is against the patients’ beliefs or wishes.
The most common barriers to advance directives, says the CDC, are a lack of awareness of ACP, denial of one’s health status, confusion about options, and cultural difference and beliefs.1 Studies have shown that, among community-dwelling Medicare beneficiaries aged 65 years and older, African Americans and Hispanic Americans are more likely to want life-extending drug treatment than white Americans, even if it has uncomfortable side effects; and fewer African Americans (49%) and Hispanic Americans (57%) than white Americans (74%) said they would want palliative medications that might be life-shortening.2 In addition, African Americans (24%), closely followed by Hispanic Americans (29%), are less likely to document formal advance directives.3
Many doctors and researchers feel that cultural barriers and personal bias are too often the cause of a lack of communication about ACP and thus advance directives. One such doctor is Kathleen Mitchell, MD, an attending physician in the department of hospice and palliative medicine at Jamaica Hospital Medical Center in Queens, NY. In order to combat this types of obstacles, Dr Mitchell and a team developed a new guide to help facilitate crucial ACP discussions that address their patients’ culturally-based concerns while fostering awareness of their own biases in order to reduce racial disparities in end-of-life care.
The guide Dr Mitchell and her team developed is called “A REFLECTION,” a mnemonic tool that lists important conversation elements to keep in mind when talking about their future care goals: Allow, Reflect, Empathize, Facilitate, Listen, Engage, Compassionately bridge, Trust, Inquire, Open, and Name needs. The tool is meant to be a loose and flexible guide for doctors when talking to patients about what their concerns and fears may be in relation to their future care. The guide was created with the idea that doctors themselves must practice a degree of self-reflection in order to dispel any personal bias or reluctances that may hinder their ability to discuss clearly and directly the possible strategies for end-of-life care.
For a better sense of the underlying principles of the tool and how it can be used to improve care, Annals of Long-Term Care: Clinical Care and Aging spoke with Dr Mitchell about this new tool for health care professionals, which was also presented at the 2016 American Academy of Hospice and Palliative Medicine meeting.
Can you explain the contextual issues and research that motivated the creation of this new guide?
We were motivated to create this guide based on our experiences as clinicians and educators at a busy teaching hospital in a diverse community. Daily, we have cross-cultural encounters through our roles as palliative medicine consultants, and we aim to balance the best care for the patient and family with our own time constraints, with teaching learners, and with the need for self-care and reflection.
We have experience with communication training, empathy training, and other cultural competency models, but we either felt like there was too much simplification in the approaches just to make a mnemonic (and unnecessary pressure to memorize it) or too many bullet points to enable easy recall.
Our guide, we feel, is open enough to allow for easy recall of the important aspects of the patient/family needs and is considerate enough to remind us of the need for self-reflection in preparing for these sensitive encounters. What we seek as a result of this guide is not cultural competency but cultural humility, which incorporates a lifelong commitment to self-evaluation and self-critique, in order to redress the power imbalances in the patient-physician dynamic and to develop mutually beneficial and nonpaternalistic clinical and advocacy partnerships with communities on behalf of individuals and defined populations.4
What role does culture play in relation to ACP? Why do you think African Americans and Hispanic Americans are particularly unlikely to participate in ACP?
Dr Cecil Helman provides a great definition of culture in Culture, Health, and Illness,5 that he says is “a set of guidelines (both explicit and implicit) which individuals inherit as members of a particular society, and which tells them how to view the world, how to experience it emotionally, and how to behave in it in relation to other people, to supernatural forces or gods, and to the natural environment.” We inherit parts of culture, and we refine our own individual culture through our everyday experiences and traumas, our major events, and our perceived racial microaggressions, which are described by Dr Derald Wing Sue as “brief, everyday exchanges that send denigrating messages to certain individuals because of their group membership.”6
As such, culture determines how individuals see themselves, see others, interpret illness, respond to illness, receive and communicate bad news, and make decisions regarding end-of-life care. Patients who identify within the African American culture are strongly influenced by historical traumas (from slavery to the Tuskegee Study to the continued disparities and poorer health outcomes for African Americans) as well as individual experiences with everyday racial microaggressions, both of which set the base for a mistrust that the medical system will honor any written advance directive or give them the best care possible.
Additionally, both African American followed by Hispanic American cultures are more likely to report that religious beliefs are an important part of their daily lives and to desire family or community-based decision-making. These factors influence advance care decision-making by replacing the current focus on individual autonomous documentation of end-of-life desires with dependence on a group of trusted family and friends to make decisions with the individual’s interest in mind during a severe illness.
For some groups, documenting decisions made in advance can be seen as not trusting your family or not trusting God enough to care for you; additionally, some fear that the decision to decline aggressive care may result in a lack of adequate care. So, instead, African Americans and Hispanic Americans favor more informal means of ACP, choosing to make their preferences known in advance to their loved ones who will be their surrogates in the event of future serious illness.
Our tool (see “A REFLECTION Tool”) is meant to guide an open conversation with minority patients in order to find their individual solution to making the right care happen for them in the right way, bridging the needs of the medical community (autonomy, proper legal documentation, right processes, the triple aim) with the needs of the patient and family (best care, patient goals, maximal quality of life, minimal family distress).
What specific kinds of scenarios does this tool help with? What real-life experiences can you describe that support the necessity for this tool?
We designed the guide when considering how to teach appropriate ACP within a diverse community that had low rates of advance directives. We reflected on our own experiences, frustrations, and failures in doing this and sought to make our own guide that would bring aspects of previously learned cultural communication guides with appreciation for your own and the person’s own uniqueness and biases.
I have personally had multiple experiences trying to obtain written autonomous advance directives from minority patients and felt like a failure when I was unable to obtain an actual document. However, we are now teaching our residents, fellows, and colleagues that a success is when you are able to have an open conversation with a patient that breaks down barriers and highlights real patient desires, even if they do not desire to write it down.
Are there accompanying suggestions or examples for the use of the tool? Can you give some suggestions now? For instance, are various scenarios and conversation strategies given with the tool?
Implementation practices could include a lecture on the use of the tool, such as we shared at the American Academy of Hospice and Palliative Medicine meeting, with case examples and the ability to practice with each other (see “Examples of Conversation Strategies Based on Guide”). A print-out of “A REFLECTION” could also be consulted before beginning a patient visit to remind practitioners to center themselves.
Would you encourage facilities and practices to make an effort to meet and discuss the use of the tool with their staff? Could nonlicensed staff, such as nursing home volunteers, make use of the tool in addition to doctors and nurses?
We do think that this is something useful for all care team members and in any clinical setting. It merely takes a person who is willing to have that cultural humility when approaching sensitive patient care interactions, especially when you’ve found in your self-reflection that there is a practitioner-patient difference in decision-making style or personal values/goals.
Many organizations are required to have trainings such as corporate compliance or cultural sensitivity, and something like this would be useful. Nursing homes are home to many minority patients as well as staff members; over time, patients and staff can grow very familiar with one another, thus staff members can become important participants in making patient care plan decisions. When staff members are culturally self-aware and informed on how to best elicit open, honest patient and family information about a sensitive decision, then all staff members can act as patient advocates in the best way possible.
What are the most important elements of the “A REFLECTION” guide that you would like to expand upon and emphasize? What should be kept in mind when implementing the tools’ suggestions into practice?
I believe that the most important part of “A REFLECTION” is remembering to look in the mirror and look inside yourself in order to inspire a compassionate interaction with the patient you encounter. If we seek cultural humility, it starts with identifying, naming, and moving past the biases you hold within yourself, so that you can meet the patient on a level that is human to human. You have the clinical obligation to provide care and exchange of information to accomplish a medical goal, but this is best accomplished though human-to-human cultural humility.
The other aspects of “A REFLECTION” come naturally from this starting point. What to keep in mind is that it is not meant to be memorized and strictly used in order from A to N (as we tended to do as medical students). Instead, it should be used flexibly to cultivate one’s openness to the discomfort of advance directive conversations. We hope the guide can help bring out one’s best capabilities to make sure care matches the patient’s needs and goals.
The successful use of the guide would, ideally, result in a reduction of disparities in the use of advance directives—not by forcing everyone to use typical advance directive forms but by eliciting goals through compassionate, open discussions, so that patient wishes may be clearly communicated to surrogate decision-makers and/or documented in the medical record and thus ensure that care will be in line with patient wishes.