EFFECTIVE COMMUNICATION WITH PATIENTS AND FAMILIES

Although talking about illness and death can be difficult for both health professionals and patients, studies show that most patients want to have this discussion. Sharing bad news while maintaining hope is a delicate balance that takes practice to achieve. The patient is encouraged to discuss these matters with those who are closest to them, especially with any person who is named as a healthcare proxy in an advance directive.

The definition of “family” may include more than those people with a common heritage, but those with whom the patient has a very close relationship. It may incorporate unmarried life partners, family friends, roommates, and close friends (Sole et al., 2021).

Many people who do not fear death do fear the process of dying, the prospect of pain and suffering, and being a burden to their families. Research shows that the top priorities for a loved one with terminal illness are:

• To be sure that the patient’s wishes are honored
• Choice among the types of services the patient can receive
• Pain control tailored to the patient’s wishes
• Emotional support for the patient and family
  (NHPCO, 2022b)

The healthcare professional must demonstrate nonjudgmental acceptance of the patient and family’s composition, values, and personal feelings. This includes supporting the patient’s and family’s hopes for prolonging life as well as their hopes for peace and dignity throughout illness, dying, and death. Effective management of pain and other symptoms as well as emotional and psychological support of the patient and family are always possible (NIA, 2018).

Effective communication by hospice nurses and all of the members of the multidisciplinary team enhances symptom management for the patient, reduces family caregiver burnout and distress, and potentially improves bereavement adjustment.

Preparing for Death

Preparation for impending death is one of the most crucial experiences that a person can have. In addition to selecting a healthcare proxy, making decisions about lifesaving or extraordinary measures, and financial planning, a person must face their own feelings about death. The conversations with family, loved ones, the healthcare proxy, clergy, and healthcare professionals must be open and honest about the patient’s wishes. This may also lead to discussions about beliefs and values around death.

Coming to the end of life includes tying up loose ends, saying goodbye, and giving thanks, whether or not a patient is religious. Loose ends usually include financial arrangements, typically in the form of a will or a trust. Saying goodbye includes those closest to the patient, favorite activities or locations, and possessions. Giving thanks may include working with a spiritual advisor or simply reflecting on one’s life. If they are able, patients at the end of life often spend time contemplating significant events and turning points in their lives (Erickson, 2019).

Elements of Good Communication

There are certain factors that promote better communication between clinicians and patients and loved ones during end-of-life care and others that interfere with communication. Recognition of these factors will enable healthcare workers to improve communication between both sides of the care partnership and provide opportunities for greater comfort for the patient.

Some factors that may improve communication include:

• Including family, friends, and caregivers in communication
• Providing a quiet place with no distractions
• Explaining things to the patient in a way they can understand, including writing, pictures, and objects
• Speaking clearly and ensuring understanding, particularly if there is a potential language barrier
• Listening attentively and assuring one has understood
• Using plain language instead of medical jargon
• Asking open-ended questions

Factors that may hinder communication include:

• Asking “yes/no” questions, which typically elicit a one-word answer
• Speaking a foreign language
• One party not clearly understanding what the other is saying
• Illnesses that can affect communication (e.g., motor neuron disease [MND], Parkinson’s disease, multiple sclerosis [MS], head or neck cancer, stroke, brain tumor, severe dementia, severe head injury)
• Lack of access to a speech and language therapist
• Sensory impairment (e.g., deafness, sight loss)
• Learning disabilities
• Emotional distress
• Drowsiness or unconsciousness
• Attempting to communicate while wearing personal protective equipment (PPE)
  (Marie Curie, 2022)

Cultural Sensitivity

“Culture” is often defined as the set of attitudes, beliefs, and values that people and societies pass down between generations. Cultural competency requires that healthcare professionals understand cultural differences in order to be effective and respectful in their delivery of care. This involves acquiring specific knowledge about the beliefs and practices of different cultures as related to healthcare and end of life. Thus, it is important that clinicians ask open-ended questions rather than make assumptions based on appearances. Cultural sensitivity also includes the avoidance of stereotyping.

DIVERSE PREFERENCES

Cultural beliefs about healthcare, especially end-of-life issues, are as diverse as the different cultures that seek healthcare. Some examples of this diversity are discussed below.

African Americans may value personal autonomy and often mistrust the healthcare system because of observations of disparate treatment of their community in the delivery of care. A desire for aggressive interventions results in a low percentage of terminal African Americans agreeing to hospice care. African Americans may fear that acceptance of palliative or hospice care will prevent them from receiving the care they desire, and prior difficulties with access to healthcare may color their acceptance of less aggressive care. Due to strong spiritual beliefs, African American families who are Christians may prefer to have a Bible in the hospital room of their dying loved one. The presence of clergy and nonrelated fellow church members may also be especially appreciated (McDarby, 2019).

Because hospice care is considerably less expensive than care that would occur in an acute care hospital, particularly in the ICU, non-White patients and families may question solutions that may have the appearance of not including the best care possible. Again, this may be based on prior difficulties with access to care.

When a loved one is dying in the hospital, Latinx patients and families often express preferences for care through a male spokesperson. Often the request is made that a priest or chaplain be present when healthcare professionals are discussing end-of-life issues. It is felt that there is a burden placed on the family to understand much of the healthcare procedures and that the paperwork handed out to aid in comprehension is not helpful. Latinx patients and family often communicate that having caregivers of a similar race/ethnicity is more comfortable (McCleskey & Cain, 2019).

Latinx families who are strongly Catholic often request that the patient’s rosary beads be placed in the dying patient’s hands or taped to the frame of the bed. The patient and family may feel comforted if a priest performs the Sacraments of the Sick (no longer called “Last Rites”) for the patient. Language barriers can be a significant challenge in cases where patients or family members do not speak English. Older Latinx patients are less likely to have advance directives and prefer comfort care at the end of life.

Study data from the 2015 Asian American Quality of Life survey of subjects with varied Asian backgrounds and who were at least 60 years of age identified the following factors in older Asian people’s use of advance directives (ADs):

• Asian people use family-centered decision-making.
• The family may choose not to disclose a terminal diagnosis to the patient because of the “taboo” that discussing death may cause death.
• Language is a factor that may block access to AD use across all Asian subcategories.
• Study subjects with less time in the United States were less likely to have ADs.
• Those with increased education, financial status, and better health insurance were more likely to have ADs.
• The older the study subject, the less likely they were to have ADs.
• Gender and marital status did not significantly affect use of ADs.

Among the study subjects, active use of ADs differed among Asian populations as follows:

• Chinese, 24.7%
• Asian Indian, 31.2%
• Korean, 8.2%
• Vietnamese, 21.2%
• Other Asian, 25%
  (Rhee & Jang, 2019)

Healthcare practices are very different in the Southeast Asian Hmong community when compared to Western medicine. A traditional Hmong belief is that illness is caused by spirits and soul loss. The decision to seek Western medicine versus a traditional shaman may therefore depend on whether the illness is believed to be spiritual in nature. The fundamental conviction about death in this culture is that it is a journey from the physical to the spiritual world.

Elaborate religious ceremonies are undertaken during dying, including an altar built by the eldest son. The family must be involved in all decision-making. Withholding lifesaving procedures is considered disrespectful. The preferred scenario is for the patient to die at home, as this is believed to bring good fortune to those in the household (Fadiman, 1997).

White people tend to receive more healthcare services and spend more on those services than Hispanic and African American patients. White Americans are less likely to seek aggressive treatment at the end of life and are less likely to die in a hospital than their Hispanic or African American counterparts (Orlovic et al., 2019).

“BENEFICENCE” VS. “TRUTH-TELLING”

Whereas the mainstream U.S. model of end-of-life care values autonomy (i.e., right to self-determination) and “truth-telling,” healthcare models in other cultures may place a greater value on beneficence, which includes protecting the patient from bad news about serious illness. In such cultures, disclosure of serious illness may be considered disrespectful, impolite, or even harmful to the patient.

Learning about the patient’s and family’s cultural values can begin with a simple statement followed by an open-ended question: “Some people want to know about their illness and others do not. Some would prefer that I talk with a family member. How do you feel about it?” This gives the patient the option to refuse or accept information about diagnosis or prognosis and to designate a family member to act as a surrogate. This also helps to determine the patient’s or family’s wishes regarding who is given information about a patient’s prognosis or progress.

Researchers suggest three strategies for addressing the “secrecy” dilemma and other cultural differences in end-of-life care:

• Detailed information to increase the knowledge about palliative and hospice care
• Use of case assessment tools to determine communication preferences and the family’s role in decision-making
• Providing culturally sensitive end-of-life navigation
  (Akdeniz et al., 2021)

In Latinx communities, promotores may prove helpful in implementing the above education and communication strategies. Promotores are community members who promote health in their own communities and help alleviate access-to-care barriers. As members of minority and underserved populations, they are in a unique position to build on strengths and to address unmet health needs in their communities (MHP Salud, 2022)..