Behind the Doors of Home Hospice Patients: A Secondary Qualitative Analysis of Hospice Nurse Communication with Patients and Families

Abstract

Objectives:

Hospice nurses frequently encounter patients and families under tremendous emotional distress, yet the communication techniques they use in emotionally charged situations have rarely been investigated. In this study, researchers sought to examine hospice nurses’ use of validation communication techniques, which have been shown in prior research to be effective in supporting individuals experiencing emotional distress.

Methods:

Researchers performed a directed content analysis of audio-recordings of 65 hospice nurses’ home visits by identifying instances when nurses used validation communication techniques and rating the level of complexity of those techniques.

Results:

All nurses used validation communication techniques at least once during their home visits. Use of lower level (i.e., more basic) techniques was more common than use of higher level (i.e., more complex) techniques.

Significance of Results:

While hospice nurses appear to use basic validation techniques naturally, benefit may be found in the use of higher level techniques, which have been shown to result in improved clinical outcomes in other settings.

Introduction

Hospice services have been shown to increase the likelihood that terminally ill individuals will die in the setting of their choice which, for many people, is their home (Tang & McCorkle, 2003). While patients and families cite positive aspects of giving and receiving end-of-life care in the home environment, these experiences can also be exceptionally stressful (Carlander et al., 2011). As dying individuals experience physical decline and increasing dependence, their family members face the physical, emotional, and financial demands of caring for someone while also anticipating their death (Wilder et al., 2008).

As members of the hospice interdisciplinary team, nurses are responsible for supporting home patients and their family members in coping with stressors, which requires communicating about the emotional aspects of care in addition to the physical realities of advanced illness (Milone-Nuzzo et al., 2015). While communication training is highly variable in formal nursing education, numerous opportunities exist for specialized training in specific fields. For hospice and palliative care nurses, communication training is available through initiatives such as the End-of-Life Nursing Education Consortium (Wittenberg-Lyles et al., 2013) and the interdisciplinary Serious Illness Care Program (Bernacki et al., 2015). Both of these trainings recommend the use of validation communication techniques, which acknowledge patients and families’ emotions and send the message that those emotions are real and understandable. By recognizing and validating patients and families’ feelings, providers build trust and establish a solid foundation for subsequent care (Feil, 1993).

While validation communication techniques are often discussed in a more general sense in physical healthcare settings, they tend to be regarded in considerable depth among mental health practitioners, who routinely care for individuals coping with emotionally destabilizing experiences. For example, psychologist Marsha Linehan, who developed an intervention called Dialectical Behavior Therapy, describes validation as occurring on six different levels of increasing complexity (Linehan, 2015). Level one validation involves simply being present and giving one’s undivided attention, while level six validation requires interacting with another person in radically genuine manner, regarding them as a competent equal.

Study Aim and Research Question

While validation communication techniques have not been formally incorporated into supportive interventions in end-of-life care, the strong emotional context in which dying occurs suggests that they may be useful in the provision of hospice services to terminally ill individuals and their families. Although prior research has shown that hospice nurses engage in emotional talk during home hospice visits (Ellington et al., 2012), the extent to which they employ validation as part of that talk remains unknown. To address this gap in the literature, research sought to examine the use of validation communication techniques by hospice nurses during home visits to patients and their family caregivers, asking the following research question: In what ways do hospice nurses validate the emotional experiences of patients and family caregivers during routine home visits?

Methods

Researchers conducted a directed content analysis (Hsieh & Shannon, 2005) of secondary data that were originally collected as part of a larger parent study (P01CA138317) conducted from 2011–2014. The original study was approved by the University of Utah Institutional Review Board (IRB). Data were shared with collaborators at the University of Missouri pursuant to a Data Use Agreement executed in April 2015. A full description of data collection strategies is available elsewhere (Reblin et al., 2016); however, in brief, hospice nurses from four different geographic regions of the United States audio-recorded their routine home visits. All participants (i.e., nurses, patients, family caregivers, others) provided informed consent to be audio-recorded in accordable with the IRB-approved study protocol.

The dataset analyzed in the present study consisted of transcripts from audio-recordings of 65 hospice nurse visits, which were purposively selected to ensure maximum variation in terms of nurses’ years of experience, race, and gender. No two visits were conducted by the same nurse. The original audio-recordings totaled 18 hours and 21 minutes total minutes in duration, with a mean visit time of 38 minutes.

The transcripts were analyzed by two medical students using directed content analysis procedures (Hsieh & Shannon, 2005). Linehan’s (2015) six levels of validation, described in detail in the results section, served as the coding frame. First, the students worked with a licensed clinical social worker (JT) with extensive experience in Dialectical Behavior Therapy to code seven transcripts, representing approximately 10% of the dataset. Then, after they had gained familiarity with the level/code definitions, they separately coded seven additional transcripts and afterward reconvened to calculate interrater reliability (Lombard et al., 2002). After confirming an acceptable level of agreement in coding decisions (i.e., > 90%, Neuendorf, 2002), they divided the remaining transcripts and coded them independently. As an extra step to assure rigor, all final coding was reviewed by the licensed clinical social worker who originally trained the students in applying the coding frame.

Results

Table 1 provides the demographic and practice characteristics of the 65 nurses whose visits were analyzed in the present study. Nurses on average had slightly more than three years of hospice experience with a range of 0–21 years. The majority identified as female (91%) and White (74%). Patient and caregiver data were not included in the institutional Data Use Agreement and, thus, were unavailable for inclusion in analysis.

Table 1:

Summary of Demographics of Nurses (n=65)

Demographic	Frequency (Percentage)
Gender Female Male	59 (91%) 6 (9%)
Race White Black/African American Asian Other Unknown	48 (74%) 4 (6%) 2 (3%) 2 (3%) 9 (14%)
Degree Associate’s degree Bachelor’s degree Graduate degree Unknown	44 (68%) 17 (26%) 3 (5%) 1 (1%)
	Mean (Range)
Age	44.2 yrs (25–69 yrs)
Nursing Experience Mean Years as RN Mean Mean Years as Hospice RN Mean	13.6 yrs (1–46 yrs) 3.3 yrs (0–21 yrs)
Visit time Mean (Range)	38 mins (11–95 mins)

At least one use of a validation communication technique was identified in each of the 65 nurse encounters; however, the number and level of complexity of uses varied considerably across the dataset. Two nurses used all six levels of validation in their visit. In contrast, four nurses used only one level of validation. Table 2 summarizes the use and operational definition of each level.

Table 2:

Summary of Codes by Level of Validation

Code	Definition	Number of nurses who used this validation level (% of all nurses)	Number of validating statements at this level (% of all validating statements)
Level 1: Paying Attention	An effort is made to hear and understand what is being communicated. This level was coded when the nurse made a comment or sound indicating s/he was listening and cared about what the patient or caregiver was saying.	64 (98.5)	1795 (73)
Level 2: Reflecting Back	An attempt is made to restate the feelings that have been communicated. This level was coded when the nurse restated the thoughts or feelings that were expressed by the patient or caregiver.	61 (93.8)	466 (19)
Level 3: Reading Minds	An effort is made to identify something the patient or caregiver has not explicitly communicated. This level was coded when the nurse’s response clearly involved assessment of what was evident, yet unsaid by either the patient or caregiver.	41 (63.1)	111 (4.5)
Level 4: Understanding in Context	A message is communicated that the other person’s reaction has a cause or makes sense given that person’s diagnosis, history, or other relevant factors. To use this technique, the nurse requires some knowledge of the patient and caregiver.	15 (23.1)	19 (0.8)
Level 5: Recognizing the Valid	A message is communicated acknowledging that a person’s thoughts, feelings, or behaviors are normal and understandable. This level was coded when the nurse normalized a patient or caregiver’s emotional reponse.	25 (38.5)	34 (1.4)
Level 6: Showing Equality	A message is communicated that the patient or caregiver is an equal. This was coded when the nurse was heard treating the patient or caregiver as a full partner in the care experience.	13 (20)	19 (0.8)

Level 1: Paying Attention

The most basic form of validation involves making an effort to hear and understand what is being communicated (Linehan, 2015). In short, Level 1 validation is paying attention. This level was coded when the nurse made a comment or sound indicating she was listening and cared about what the patient or caregiver was saying. The overwhelming majority (73%) of validating comments were of this level, and nearly every nurse (98.5%) used this technique. The most frequent examples were one-word responses to a patient or caregiver such as “yeah,” “uh huh,” “mmm,” or “okay.” Although often minimal, these responses acknowledged that either the patient or caregiver had spoken and had been heard.

Level 2: Reflecting Back

The second level of validation goes one step further to restate the feelings that have been communicated. Validation communication techniques were coded as Level 2 when the nurse reflected back the thoughts or feelings that were expressed by the patient or caregiver. These techniques accounted for 19% of all validating statements and were used by approximately 94% of the nurses. An example of reflecting back is provided in the following exchange:

Nurse: Do you have many of your men friends that come around to see you?

Patient: Nope, none.

Nurse: No, none.

Level 3: Reading Minds

The third level of validation entails giving voice to what the patient or caregiver has not specifically said. This level was identified when the nurse’s response clearly involved assessment of what was evident, yet unsaid by either the patient or caregiver. Requiring additional skill and listening, Level 3 validation was provided in 4.5% of the identified validation statements and was used by approximately 63% of the nurses. This technique was often used in visits during which the nurse had also used Levels 1 and 2 validation. In the following exchange, the nurse used Level 3 validation:

Patient: The last time we saw [the physician], she just, you know, said obviously things are headed downhill.

Nurse: It was a hard visit.

Level 4: Understanding in Context

Level 4 validation encompasses communicating that the other person’s point of view has a cause or makes sense given that person’s diagnosis, history, or other relevant factors. To use this technique, the nurse requires some knowledge of the patient or caregiver. Less than 1% of the validating statements identified in the dataset were coded as Level 4, and this validation technique was used by approximately 23% of the nurses. An example of this technique is provided in the following discussion between a nurse and family caregiver regarding the caregiver’s decision to not attend an appointment at her daughter’s school:

Caregiver: So did I overreact? I should have gone?

Nurse: I don’t think you overreacted. You wouldn’t have been able to focus. I think you did the right thing. You would have been no good down there.

Level 5: Recognizing the Valid

Level 5 validation normalizes a person’s emotional reaction. Nurses using this level of validation acknowledged to patients or caregivers that people in circumstances similar to theirs might experiences thoughts, feelings, or behaviors like theirs. Some of the Level 5 validating comments featured self-disclosure. That is, the nurse shared that they had experienced something similar to what the patient or caregiver was going through. Other times, the nurse communicated that many people would react similarly in the patient or caregiver’s situation, or the nurse explained that they had seen other patients or caregivers experience the same thing. Codes for Level 5 validation were applied to 1.4% of the validating statements in the dataset and in visits conducted by approximately 38% of nurses. The nurse in the following example provided Level 5 validation:

Caregiver: We have the most crying in this family.

Nurse: That’s good.

Caregiver: We cry when we’re happy, we cry when we’re sad.

Nurse: It’s a stress relief, it’s a stress relief. It’s okay.

Nurse: Honestly when the people don’t cry that’s when I get concerned about them.

Caregiver: Mm-hmm.

Nurse: It really is.

Level 6: Showing Equality

This highest level of validation was coded when the nurse was heard treating the patient or caregiver as an equal partner in the care experience. By being “real” with the patient or caregiver rather than treating them as fragile, the nurse communicated respect. This was an infrequently used technique (less than 1% of the validating statements) and was used by 20% nurses. One example of Level 6 validation was when the hospice nurse responded that the patient should decide whether or not to stay in bed:

Caregiver: Should I let her[or] make her stay in bed today?

Nurse: I think we should let her decide what she wants to do.

Discussion

Findings suggest that nurses regularly employ validation techniques in their communication with home hospice patients and their family caregivers, although their use of basic techniques far outweighs their use of more complex forms of validation. We cannot conclude from the data presented here that this imbalance is necessarily problematic, however. A recent study found that, on average, hospice nurses are confronted with four unique problems during per home visit (Parker Oliver et al., 2018). They are called upon to support patients and family caregivers facing often difficult-to-manage physical symptoms such as pain and shortness of breath and, given that physician home visits are uncommon in routine hospice care (Shoemaker et al., 2012), nurses may be the best equipped members of the hospice team to address physical care issues. While providing emotional support is part of their professional role, it is by no means their sole responsibility. In addition, it is a reality of human communication that shallow exchanges are more common than intimate ones, particularly in newly formed or time-limited relationships (Altman & Taylor, 1973).

At the same time, these study findings introduce the possibility that home hospice nursing would be enhanced by greater use of higher level validation techniques, which are a vital ingredient in evidence-based interventions such as Dialectical Behavior Therapy (Linehan, 2015) that have been developed specifically to support people experiencing intense emotional distress, as many hospice patients and family caregivers are (Wittenberg-Lyles et al., 2012). In addition to building trust and rapport, more complex validation communication techniques may create a useful foundation for activities such as shared decision making that require recognition of patients and family caregivers as expert members of the healthcare team (Makoul & Clayman, 2006; Washington et al., 2016). True partnership with patients and families is, in essence, Level 6 validation. Future research examining the effect of the full range of validation communication techniques on patient and family caregiver outcomes would provide useful data to inform professional education and workplace training opportunities for hospice nurses.

Study Limitations

A number of study limitations should be considered. First, the transcripts analyzed in this study did not include information on non-verbal communication, which would likely have provided useful in context. For example, while researchers determined that one-word utterances such as “uh huh” or “okay” reflected Level 1 validation, they were not able to determine if these utterances were made with corresponding eye contact and the nurse’s full attention of if they were made somewhat automatically with little engagement. Video-recordings of home visits and/or interviews with patients and caregivers would have better allowed researchers to examine body language and facial expressions to assess both the nurse’s level of interest and the caregiver’s reaction. Second, because this analysis involved only one home visit by each nurse, researchers were not aware of any relationship that may have been built in previous visits or how use of validation communication techniques may change over time. Therefore, it was difficult to determine whether content coded as Level 6 validation was indeed validating in the context of an established nurse-patient/caregiver relationship or if at times nurses’ use of direct communication may have been experienced as invalidating due to lack of rapport or trust. Finally, this analysis focused on the presence of validation communication techniques but did not explore invalidating communication, which has been found to increase emotional reactivity during stressful situations (Shenk & Fruzzetti, 2011). Attention to this important concern is recommended for future research.