Disparities in diversity, equity, and inclusivity (DEI) are endemic in the US health care system. As population diversity increases, physical therapists (PTs) are committed to provide equitable care for all people, regardless of cultural or personal identity. To this end, hospice and palliative care (HPC) PT best practices should embrace cultural humility to improve clinical communication, advocate for the PT role within interdisciplinary HPC teams, and help reduce culture-related disparities in HPC.
This Perspective paper (1) provides an overview of the role of PTs in HPC, (2) describe culture-related disparities in HPC, and (3) suggest evidence-based best practices for cultural humility in HPC PTs. Specific challenges in the delivery of culturally humble HPC are discussed, including advanced care planning (ACP), truth telling, and death beliefs/practices.
THE SCOPE AND INTENT OF HPC
Hospice care is “a team-oriented approach to expert medical care, pain management, and emotional and spiritual support” for people with terminal illnesses.1 Hospice care does not typically include curative measures, instead focusing on symptom management, and caregiver and family support. In 2017, 1.43 million people received services under the Medicare hospice benefit.2
Palliative care is “an approach that improves the quality of life of persons ... facing the problems associated with life-threatening illness, through ... treatment of pain and other problems, physical, psychological and spiritual.”3 Palliative care typically focuses on supporting people with serious, chronic conditions, such as cancer, heart failure, chronic obstructive pulmonary disease, or neurodegenerative disorders.4
Hospice and palliative care are provided by interdisciplinary teams (IDTs) of physicians, nurses, social workers, and rehabilitation professionals. In contrast to hospice, people receiving palliative care are not required to have terminal prognoses. Table 1 Illustrates similarities and differences between HPC. Comprehensive care for people with life-limiting diagnoses occurs on an HPC continuum, as shown in the Figure.
TABLE 1 -
Hospice and Palliative Care
|Addresses spiritual, psychological, and cultural needs of patients
||Addresses spiritual, psychological, and cultural needs of patients
|Available in acute care, long-term care, or home settings
||Is community/home-based care available in hospice inpatient services?
|Does not exclude curative treatment(s)
||Emphasis on symptom management
|Should be integrated into the plan of care at the time of diagnosis with a life-limiting condition
||Six-month life expectancy
|The World Health Organization continues to describe the goal of palliative care is to improve quality of life
THE ROLE OF PTs IN HPC
Physical therapists and PT assistants in HPC provide interventions that promote patient comfort, dignity, and optimal quality of life, including positioning to prevent pressure sores and aid breathing, energy conservation techniques, gait training, edema management, equipment training, and family education. Practice patterns in HPC PTs include the following: Rehabilitation in Reverse—preparing a patient for expected decline, as in amyotrophic lateral sclerosis; Rehab Lite—the pursuit of a functional goal through interventions that decrease in intensity over time; and Case Management—monitoring patient function over an HPC episode of care.6 For example, consider the case of Bart, an 80-year-old man with end-stage glioblastoma, referred to HPC PTs with the goal of walking to the family table for his last Thanksgiving dinner. Using the Rehab Lite model, Bart received gait training with a walker, energy conservation training, and family education for safety. He was consequently able to meet his goal and died shortly after sharing the holiday with his family.
Under the Medicare hospice benefit, PTs are not members of the core HPC IDT, meaning that PT consultation is not required for all patients. Rather, PTs are part of a group of rehabilitation professionals whose services must be made available “as needed.” The 2008 Medicare Conditions of Participation for hospice participation states that licensed physical therapy, occupational therapy, or speech-language pathology services must be provided upon referral by a core HPC IDT member or at the request of a patient or family member.7 Consequently, PTs are considered nonessential members of the HPC IDT, allowing HPC organizations the option to restrict or eliminate PT services. This means that patient and family preferences often determine whether HPC PTs are consulted. A lack of cultural understanding between patient/family and providers can inhibit communication of preferences and goals and act as a barrier to PT referral.8–10 Therefore, HPC PTs must advocate within the HPC IDT to promote culturally humble, compassionate care in order to optimize patient access to HPC PTs and address culture-related disparities in HPC.
CULTURE-RELATED HEALTH DISPARITIES AND HPC
A health disparity is a “health difference that is closely linked with economic, social, or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater social or economic obstacles to health based on their racial or ethnic group, religion, socioeconomic status, gender, age, or mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion.”11 Health disparities in the United States are well documented for people with racial, ethnic, cultural, sexual, and other minority identities.12–14 Compared with the dominant population, these groups have higher prevalence and severity of serious health conditions, poorer access to health services, lower-quality health care, and worse health outcomes.15–17
These disparities also exist in HPC, with, white Americans having better access than racial and ethnic minorities.18,19 In 2017, 86.5% of Medicare hospice beneficiaries were white, 8.3% were African American, 2.1% were Hispanic, 1.2% were Asian, and 0.4 % were Native American (NA).2,20 Comparison with the overall US population in 2017 (76.6% white, 18.1% Hispanic, 13.4% African American, 8.1% Asian, and 1.3% NA) reveals disproportionate underutilization by nonwhite beneficiaries.21 Racial and ethnic minorities also consistently receive more nonbeneficial, aggressive measures at the end of life.22–24 A recent study retrospectively found that African Americans had higher levels of symptom-related suffering and less use of advanced directives than whites.25 Similarly, compared with whites, Latino Medicare beneficiaries with renal failure received more aggressive end-of life interventions and were more likely to die in the hospital.26
Culture-related health disparities are experienced by patients, families, and clinicians as institutional, cultural, and individual barriers that limit their ability to access or provide quality care.27Institutional barriers include the lack of health insurance and unavailability of culturally/linguistically appropriate health resources.28 Reticence to consult HPC due to beliefs about the meaning of illness and death is an example of a cultural barrier.27Individual barriers include personal distrust of health care. In African American communities, this distrust results from lived experiences of injustice in health care, including history of subjection to unethical biomedical experimentation by federal agencies.29–31 The following section explores how culture interacts with barriers to HPC.
ADVANCED DIRECTIVES, THE MEANING OF SUFFERING, AND TRUTH TELLING
In HPC, it is fundamentally important to have effective communication about ACP, the purpose and meaning of suffering, and truth telling with respect to patient prognosis. Cultural traditions influence patient preferences in all of these areas. For example, people from traditional, non-Western cultures may hold death taboos: the belief that talking about illness or death invites retribution from the “spirit realm.”32 This can have a chilling effect on ACP, making it crucial to discuss end-of-life planning with utmost sensitivity. Similarly, in some religious traditions, suffering may be thought to provide an opportunity for atonement and sacrifice.33 Resulting patient/family reluctance to engage with HPC may confuse providers if the underlying cultural meaning is not understood. Finally, the concept of truth telling, or disclosure of a terminal prognosis, is embedded in the US health care system as a reflection of Western individualism and the bioethical principle of autonomy. However, some cultures hold collectivist, family-centered beliefs that may view truth telling as harmful or disrespectful.34 Communicating meaningfully about ACP, suffering, and truth telling in culturally diverse patient populations requires a persistent, process-oriented approach. This approach, termed “cultural humility,” demonstrates unconditional positive regard and affirmation of every person's cultural perspective.35
CULTURAL COMPETENCE VERSUS CULTURAL HUMILITY AS BEST PRACTICE
Cultural best practices in PT currently focus on developing cultural competence in clinical decisions and communications.36,37 This approach cultivates behaviors that enable “effective work in cross-cultural situations,” with mastery of cultural knowledge as its goal.38 With this approach, cultural identity is divided into categories, with indicated culturally competent practices for each. This “checklist” approach to managing complexity is ineffective in addressing health disparities due to issues with observer bias and a propensity for stereotyping individuals.39
Consequently, other health fields have moved from the endpoint-oriented cultural competence approach to a process-oriented approach termed “cultural humility.” This approach emphasizes the self-reflexive process of examining thoughts, feelings, and actions, rather than the mastery of cultural knowledge.35,40 The aim of this approach is to develop humble awareness of cultural differences and the associated power imbalances that affect clinical communication, decision-making, and outcomes. This is achieved through persistent engagement, openness, and appreciation of the role of culture in our professional and personal lives. Table 2 illustrates the differences between the cultural competence and cultural humility approaches.
TABLE 2 -
Differences Between Cultural Competence and Cultural Affirmation
|General empathy and compassion
||Fostering respect, equity, and justice
Movement toward cultural humility in HPC has been led by the fields of social work and nursing. Seeking to replace the mastery orientation of cultural competence, guidelines for palliative care nursing require clinicians to continuously examine their own attitudes and biases, using questions such as “Have I actively sought information to enhance my own awareness and understanding of multicultural diversity?” and “Have I consciously pondered my own attitudes and behaviors as they either enhance or hinder my relationships with others?”41 Similarly, a consensus process undertaken to identify core best practices for palliative care social workers recommended transition to a self-reflective approach to practice with culturally diverse populations and required the provision of care only within the scope of a patient's culture.42 Guided by these progressive examples, HPC PTs should embrace cultural humility in order to best serve patients/clients.
BRINGING CULTURAL HUMILITY TO HPC PT PRACTICE
A recent qualitative study of barriers to hospice care in an ethnically diverse group of stakeholders (including physicians, nurses, social workers, chaplains, and caregivers) suggested improvements for HPC in culturally diverse populations, including recommendations for training and curricular changes, increases in HPC faculty and leadership diversity, and improved community engagement (Table 3).42–44
TABLE 3 -
Themes of Cultural Barriers to Hospice and Palliative Care
and Suggested Solutions
|Cultural Barriers to Hospice and Palliative Care
|Universal challenges of goals of care conversations
||Increased hospice and palliative care training
|Cultural norms and beliefs
||Cultural liaisons from local communities
||Specialist goals of care language interpreters
||Improved workplace diversity
|Cultural distrust of hospice and palliative care
On the basis of these findings, the following sections provide strategies and recommendations for bringing cultural humility into HPC PT practice, beginning with Doctor of Physical Therapy (DPT) education.
TEACHING CULTURAL HUMILITY IN DPT CURRICULA
To improve cultural humility among PTs, it is necessary to improve the teaching of cultural humility to DPT students. To this end, didactic, experiential, and service learning opportunities should be included in DPT curricula to better prepare DPT students to practice in culturally diverse settings.45 These efforts should emphasize the development of student self-reflection within an environment of cultural safety.46 A single interactive classroom session, provided by a trained facilitator, can realize lasting gains in student cultural awareness and sensitivity. However, students derive greater benefit from more robust and intensive experiential learning with standardized patients and guided role-playing of selected patient cases. These experiences should be included in all DPT curricula as a minimum competency. For maximum effect, efforts should be made to develop community-based cultural learning opportunities in DPT curricula. A 2019 study found that PT students who participated in an indigenous community-based practicum reported increased appreciation of indigenous culture and demonstrated improved cultural humility in clinical interactions.47
INCREASING PT WORKFORCE DEIIncreasing DEI in the PT workforce is an important part of efforts to address culture-related disparities in HPC and health care. Better health outcomes occur when providers' identity reflects the population whom they serve, and health practitioners from minority communities are more likely to practice in underserved populations.48 The next sections feature recommendations to increase DEI in DPT admissions, clinical education, and faculty/mentor development.
Increasing DEI in DPT Admissions
Although lower skilled health professions largely comprise minority workers, there is a profound lack of diversity in higher skilled professions, reflecting the lack of equity in postgraduate health care education.48,49 According to 2018-2019 DPT program data, there is underrepresentation of Hispanic (6.53%), African American (3.39%), and NA, Native Hawaiian, or Pacific Island (<1%) students in DPT enrollment.50 One effective strategy to improve equity in health professional enrollments is the use of holistic review for admissions, an approach that considers an applicant's life experiences, fluency in a language other than English, commitment to practice in underserved populations, and self-identification as an underrepresented minority, in addition to test scores and academic performance.51 This approach was used by the Texas Medical and Dental School Application Service to increase the proportion of underrepresented minority internal medicine residents and has been adopted nationwide by 93% of dentistry schools, 82% of public health schools, 78% of pharmacy schools, and 47% of nursing schools.52,53 These initiatives have been successful; 72% of schools that use holistic admissions report increased diversity in the resulting incoming classes. Within the field of PT, the use of holistic admissions by 5 US DPT programs was highlighted in a 2018 APTA Educational Leadership Conference, which encouraged the adoption of holistic admissions throughout PT education. This position is also supported by the American Council on Academic Physical Therapy and the Academy of Physical Therapy Education.54
Increasing DEI in Clinical Education
Bias in the evaluation of PT students in clinical internships was documented in a 1997 study that asked experienced clinical instructors (CIs) to evaluate video of a standardized case report given by a white, Asian, Hispanic, or African American PT student.55 The African American student was rated worst in communication skills, with a perceived lack of organization, and inability to relay appropriate information. More recently, a survey of experienced CI impressions of white and nonwhite DPT student performance found that 1 in 6 CIs judged the performance of nonwhite students to be generally worse than whites and 1 in 25 CIs expected that white students would perform better than nonwhite students.56 This result was driven by negative impressions of nonwhite students' interpersonal skills, with more than half of CIs reporting that communication was a weakness for nonwhite students. Finally, a 2016 study found that nonwhite students were much more likely than white students to experience difficulty with a CI during a clinical internship.57 These findings suggest that CI perceptions of student performance are influenced by cultural bias, negatively impacting clinical education for minority DPT students. To facilitate growth in diversity in our field, DPT programs must make efforts to recruit and retain minority CIs and to provide training in DEI and cultural humility for all CIs to reduce the effect of bias.
Increasing DEI in DPT Faculty
There is less diversity among DPT faculty than in the general PT workforce. A 2012 study found that African Americans and Hispanics combined to comprise just over 5% of core faculty at accredited DPT programs and that 40% of programs had no underrepresented minority faculty at all.48 The presence of minority DPT faculty is effective in attracting minority applicants, and minority faculty mentorship may positively affect minority student retention and graduation.58,59 Conversely, the lack of minority faculty may inhibit minority student applications to a DPT program.48 Mindful of these results, DPT programs should make immediate efforts to attract and retain minority faculty; however, in light of the general lack of minority DPT faculty, it is unwise to rely on minority representation as the key to improving faculty DEI. Cultural competence training for culturally dominant (white, cisgender, heterosexual) faculty has had success in increasing minority DPT student retention.60 All DPT faculty members should receive cultural humility training to improve their understanding of how faculty bias may influence student success. This training is similar to that outlined earlier for teaching cultural humility in DPT curricula, with the exception that faculty training must specifically address power imbalances inherent to the teacher-learner relationship, in addition to the other aspects of cultural humility outline earlier. In addition, DPT programs can support faculty by collaborating with their surrounding communities and institutions to connect students with minority academic and professional mentors.58 These reforms in DPT education are necessary but do not address the practice of current HPC PTs. The next section provides culturally humble strategies for individual HPC PTs to communicate with patients about ACP, suffering, and truth telling.
COMMUNICATION STRATEGIES FOR ACP, SUFFERING, AND TRUTH TELLING
Cultural resistance to discussing advanced directives and terminal prognoses reduces preparedness for a death, placing survivors at risk for psychological trauma.61 The traditional Western view of health care considers the provider to be an authority who prescribes interventions with the expectation of patient compliance. In cases where patient cultural beliefs are not compatible with those of the provider, the failure of this approach can compromise the patient-provider relationship and negatively impact health outcomes. Culturally humble communication removes clinicians as an authority and places them in the position of an attentive supporter. Evidence-based clinical practice guidelines for communicating end-of-life issues were developed in 2007 following a systematic review of best practice and endorsement by an expert panel.62 These recommendations, using the acronym “PREPARE,” include preparing for adequate time and privacy, relating to the person with compassion and empathy, eliciting patient preferences, providing information tailored to patient needs, fostering realistic hope, encouraging questions, and documenting results in the patient's medical record. This patient-provider orientation aligns with the principles of motivational interviewing (MI), a patient-centered form of dialogue that explores and resolves ambivalence about behavior change.63 Patients receiving HPC may be reluctant to talk about dying, while wanting to provide for the future welfare of family members. The goal of MI is to resolve this ambivalence through dialogue and guided self-discovery, removing the power imbalance of traditional provider-patient interaction. For example, to explore ambivalence on the use of medications to relieve pain, a PT could ask “What does your pain mean to you?” to elicit a discussion of culturally acceptable interventions. Similarly, a conversation about patient suffering could begin with a compassionate reflection, “This must be so hard for you,” followed by a probe to elicit the patient's perspective on relieving his or her suffering, “what (or who) could be helpful to you right now?”
To encourage a discussion of advanced directives, a PT may ask, “What is most important to you as you think about your future?” A recent study described the use of MI techniques to foster discussion of patient values and preferences, with the goal of completing an advanced directive form.64 This type of approach has been found to improve end-of-life communications with minority patients.65–67
Finally, truth telling must always be prefaced by evoking patients' understanding of their situation, as well their readiness for hearing their prognosis. The setting, perception, invitation, knowledge, emotions, and summary (SPIKES) protocol is one of the most widely used strategies for delivering bad news, a major element of truth telling.68
CASE EXAMPLE FROM NA CULTURE
The following case relates the history and experience of a Navajo woman who was caregiver and navigator for her mother in hospice care. Their narrative is shaped by the ongoing legacy of cultural trauma among NA people and by culture-related HPC disparities that impact decision-making and quality of life for many minority families.
There are 6.7 million NA people in the United States (2% of total US population), which include American Indians and Alaskan Natives. Most NA people belong to one of 573 federally recognized tribes, and many reside on federally recognized reservations. However, because of many factors, including the lack of access on reservations to basic services, employment, and educational opportunities, more than 60% of the NA population now lives in cities, navigating between traditional and Western cultures.69
Native American people have the lowest socioeconomic status of all US racial or ethnic groups, with a poverty rate of 26.2% versus 14% for the US population as a whole.70 Housing conditions for NA people are also substantially worse than for the general US population, with many homes lacking basic amenities such as insulation, heat, and plumbing. Basic services, such as grocery stores and gas stations, are largely absent on reservations, necessitating long-distance travel for residents to perform daily tasks. Consequently, accessing reliable transportation is particularly important for reservation residents.
The overall health of the NA population is significantly poorer than the US average, with a much higher incidence of heart disease, tuberculosis, alcoholism, and diabetes, more than double the national rate of motor vehicle accidents, and the highest incidence of suicide of all US ethnic groups. Consequently, NA people have a 5.5-year lower life expectancy than the general US population.70
Native American reservations are federally protected, and each tribe is a sovereign nation with its own governance and laws. Reservation land is generally held “in trust” by the federal government, an arrangement that has contributed to high poverty rates on reservations by making it virtually impossible for residents to own land. Educational attainment is also lower for NA people, with 24% earning bachelor's degrees compared with 48% of all US adults.70
Starting in 1890, NA people experienced forced cultural assimilation through mandatory attendance at “Indian residential schools.”71 Thousands of NA children were removed from their homes and brought to live at residential schools, where they were assigned Western names, groomed and dressed in Western style, forbidden to speak native languages, and forced to adopt the Christian religion. Abuse was widespread in these schools, to the point that many facilities had their own cemeteries. Although most US residential schools were closed by the mid-1960s, forced assimilation stripped a large number of NA people of their cultural traditions. Cultural rediscovery efforts continue to this day among NA people attempting to reclaim this heritage.
Health care for NA people is largely provided by the Indian Health Service (IHS), which was created in a 1787 agreement between the US government and NA nations.70 The IHS currently serves 2.3 million people, with a budget of US $5.5 billion, a per capita expenditure that is far less than other federal health care programs (Medicare, Veterans Administration, etc), and well below the federal disparity index.72 The Government Accountability Office reported that “IHS officials cannot ensure that facilities are providing quality health care because of limited and inconsistent oversight, significant leadership turnover and lack of agency-wide quality of care standards,” and the IHS itself reports only being able to cover 60% of the health care needs of its clients.72,73
Culturally appropriate HPC services are essentially unavailable to the NA population, and HPC is almost entirely absent on reservations.74 While this is largely due to the lack of IHS funding, access to HPC services is also limited by death taboos among many traditional NA people.75 These taboos often result in the abandonment of any home where death occurs, greatly adding to the potential economic effect of death on a family. These beliefs also inhibit truth telling regarding a terminal prognosis and greatly reduce the use of advanced directives among traditional NA people.76 The following narrative illustrates how these challenges manifested in the lives of an NA family.
Twila's End-of-Life Journey With Her Mother
Twila was born and raised on a reservation in Navajo, New Mexico. Her grandmother was born on the reservation but grew up in a residential school, and her grandfather was a medicine man. Her grandparents had 15 children, including her mother, Yvonne. Although Yvonne lived on the reservation, she had obtained a college degree and encouraged the education of her own children. She had also adopted Christianity, passed to her by her mother.
Over time, Yvonne developed heart disease that required bypass surgery, which was complicated by the lack of cardiac physicians in her area. The IHS policy in such circumstances is to transport a patient to the nearest available IHS provider, regardless of the distance from the patient's family. Yvonne was transported to an IHS hospital in Tucson, Arizona, 400 miles from her home. Over the next 5 years, Twila and her siblings alternated traveling 195 miles to an IHS clinic for frequent follow-up visits as Yvonne's health worsened.
At the end of her life, Yvonne wanted to die at home on the reservation, but there were no HPC services to support Twila and her family. As Yvonne's only daughter, Twila had assumed the traditional role of being the decision maker for her mother and was advised that Yvonne would need supportive end-of-life care. So, to facilitate this care, Twila decided to bring Yvonne to her own home in Flagstaff, Arizona, where she would be able to receive hospice care and avoid abandonment of her home.
Although both Twila and Yvonne had primarily Western beliefs, many of Yvonne's 14 siblings were more traditional. This mix of cultures was challenging; Twila had to be careful discussing Yvonne's condition and prognosis in the presence of her family. Yvonee had retained some death taboos and was unwilling to discuss the severity of her condition. She did, however, sign an advanced directive that Twila had prepared. Twila and Yvonne also allowed the family to engage in Navajo death rituals, meant to facilitate peaceful transition to the next realm. Twila noted that the hospice team also supported Western and traditional cultures, allowing her family to provide as much direct care as they desired, and respecting their rituals. Over this time, Twila educated herself on the dying process and treasured the opportunity to be with her mother as she passed. Notably, she reported that many of her family members have refused to visit her home since Yvonne's death, due to the death taboo.
Twila recognized that the lack of hospice services on her reservation had been a barrier to Yvonne receiving care and expressed gratitude that she had been able to bring her mother into her home to die well. Since then, Twila has joined a hospice board of directors in Flagstaff to bring about change in that organization, educate HPC providers in cultural factors that are important when working with Navajo people, and work toward the establishment of hospice services on her reservation. Twila's recommendations to address HPC disparities in her community echo evidence-based strategies, including calls to train providers in cultural humble practices, and to provide culturally and linguistically appropriate HPC resources.77 Twila also recommends the establishment of HPC services on the reservation to ease caregiver/family burdens and provide an alternative to home abandonment.
Physical therapists need to make immediate and meaningful changes to embrace cultural humility in PT education and practice. These changes are necessary to provide the best possible care for increasingly diverse patient populations and to address the severe lack of DEI within our own ranks. The experiences of Twila and her family exemplify the need for cultural humility in HPC. Physical therapists must contribute to this effort by leaving behind the mastery-oriented concept of cultural competence and embracing the process of developing cultural humility by examining how our actions contribute to health disparities and power imbalances. Recommended changes included adding cultural humility content to DPT curricula, increasing efforts to attract and retain minority DPT faculty, and instituting mandatory cultural humility training for all DPT faculty members. As PTs, we are called to embody the APTA vision for physical therapy, to “transform society by optimizing movement to improve the human experience.” Our commitment to these ideals can be made manifest by taking the recommended actions to address cultural and health disparities in our field in order to provide culturally humble HPC PT for all people.
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