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Abstract

Background:

The chronic disease course can be uncertain, contributing to delayed end-of-life discussion within families resulting in missed opportunity to articulate wishes, increased decisional uncertainty, and delayed hospice care. Consistent with the Family Communication Patterns Theory (FCPT), family communication patterns may affect the quality and timing of end-of-life discussion, hospice utilization, and the experience of ‘a good death.’

Objective:

To assess how families’ conversation and conformity orientation (spontaneity of conversation and hierarchical rigidity) form four family communication patterns (consensual, pluralistic, protective, and laissez-faire) and may be associated with the number and timing of end-of-life discussions.

Design:

A cross-sectional study.

Methods:

Family members of loved ones who died from chronic illnesses while in hospice (n = 56) completed online surveys including a modified Revised Family Communication Pattern instrument (RFCP) and the Chronic Illness Rating Scale (CIRS). Additional survey questions assessed the number and timing of end-of-life discussions and timing of hospice enrollment. IBM SPSS version 26 was used for descriptive analysis.

Results:

Most families (42.9%) were pluralistic, reporting communication styles with high conversation and low conformity orientation; (39.29%) were protective, reporting low conversation and high conformity orientation. Pluralistic families had more end-of-life conversations than did protective families.

Conclusion:

Study findings suggest that there may be a relationship between family communication pattern type and inclination toward end-of-life discussion. This first step supports future research regarding whether the FCPT can be used to predict which families may be at increased risk for ineffective or delayed end-of-life discussion. Additional variables to consider include the timing of hospice enrollment and the quality of the dying experience. Clinicians may ultimately use findings to facilitate earlier identification of and intervention for families who are at risk for poor end-of-life communication and outcomes.

Keywords

chronic disease end-of-life decision-making family communication pattern theory hospice older adult

Introduction

Chronic diseases account for seven of the ten leading causes of death in the United States among adults aged 65 and older.¹ Chronic disease has a much more uncertain trajectory than acute disease.^2–5 Rather than resembling a sharp and unambiguous decline, the chronic disease trajectory resembles a series of downward trending waves, reflecting exacerbation of symptoms, incomplete recovery, and acclimation to decreased functionality.^2–5 Failing to recognize persistent, but incremental health decline often results in overestimation of life expectancy, and underestimation of the need for end-of-life decision-making.^4,6,7

End-of-life conversations and decision-making often occurs within families.^4,8,9 The primary care setting is an ideal setting to facilitate these conversations due to familiarity with providers and relatively stable health status.^10–13 For many reasons, discussion is often delayed until urgently necessary, diminishing the dying loved one’s capacity for autonomy.^4,6,7 Emergent decision-making by family members under duress may not reflect the loved one’s actual, though unarticulated end-of-life wishes. This can contribute to decreased quality of end-of-life experience.^5,14–17

Early, effective end-of-life conversation and decision-making can facilitate hospice utilization prior to the final weeks of life, potentially improving the quality of the death and dying experience.^4,5,18–20 However, amidst rapid physical decline, these critical conversations regarding end-of-life decision-making can be difficult, resulting in disagreement between family members about prognosis and care.^4,5,20 Furthermore, there is little existing research that addresses the barriers to end-of-life conversations within families.²¹

Hospice

There can be value in reframing treatment goals within the limits of life expectancy.⁴ Hospice is a Medicare-funded program in which people with life expectancy of six months or less receive interdisciplinary, comfort-focused, person-centered care.²² This care can be provided in a variety of settings including at home, in residential hospice-facilities, assisted living facilities, nursing homes, or hospitals.²³ About 98% of hospice care occurs at home with family members providing much of the physical care with support from hospice staff.^23,24

Hospice enrollment becomes appropriate when illness is no longer improving with medical treatment, symptom burden continues to worsen, and patients’ physicians prognose life expectancy at six months or less.^25,26 Hospice often improves quality of life at the end-of-life by addressing physical, psychological, social, and spiritual well-being.^25,26 However, less than 50% of eligible Medicare beneficiaries enrolled in hospice care in 2022.^24,27 Older adults with chronic illness often enroll in hospice rather late; in 2020 the median number of days in hospice was 18 with 25% of beneficiaries enrolling during the last five days of life.²⁸ Late enrollment can result in missed opportunity for patients to experience the enhanced quality of life that hospice care may provide.^20,29,30

Previous work, health care staff, families, and loved ones typically agree that a ‘good death’ is without preventable suffering, is congruent with the loved ones’ and families’ wishes; and is consistent with the standards of the medical profession, cultural factors, and ethical standards.³ A ‘good death’ also includes recognition of impending death, religion and spirituality, dignity preservation, communication and relationship optimization, life completion, and legacy bestowal.^31,32 Overall, literature reviews and qualitative work in this area suggest that the death wishes of both the patient and family are important and require effective communication of preferences between family members.³³

Theoretical framework

The family plays an integral part in hospice enrollment, but not a lot is known about the ways that family characteristics influence the choice to use hospice.³⁴ Informal end-of-life conversations and their conventions within families are important. Families establish ground rules about how they communicate, including the relative permissibility of topics discussed, emotions expressed, and how they will work through their relationships and conflict.¹⁸ These factors may influence the existence and timing of informal end-of-life conversations and a better understanding of them may help providers to identify families who are at risk for ineffective or delayed communication.

Consistent with the Family Communication Patterns Theory (FCPT), families’ conversation and conformity orientation (spontaneity of conversation and hierarchical rigidity) may affect end-of-life experiences.^35–38 These orientations form four family communication patterns (consensual, pluralistic, protective, and laissez-faire) which include varying degrees of conversation intimacy, flexibility within group decision-making, and conflict resolution that subsequently influence family behaviors.^35,36,39

Within the FCPT Conversation orientation is the extent to which families establish a communication environment in which conversation is free and spontaneous.^40,39 The value of ideas is determined by objective merit rather than relative social position.³⁵ Families who have high conversation orientation value time together, discuss ideas openly, and make family decisions democratically.^35,39 Families with low conversation orientation value their time together less, narrowly define appropriate topics of discussion, and are less conversationally intimate. Decision-making is autocratic and does not consider everyone’s opinions.^35,39

Furthermore, in Conformity orientation, the value of ideas is associated with relative social position rather than objective merit.³⁵ Families who have high conformity orientation are characterized by hierarchy, conflict avoidance, collectivism, prioritizing family members over friends, and primarily allocating resources within the family.^35,37 Parents are responsible for decision-making. Meanwhile, families that have low conformity orientation are characterized by less hierarchy, more independent thought, individualism as well as collectivism, and equally prioritizing relationships with family and friends.^35,37 Children participate in decision-making.

Conversation orientation and conformity orientation interact, creating a family communication pattern that influences family behaviors.^35,39 The effect of conversation orientation on family behavior is moderated by the level of conformity orientation and vice versa.³⁵ Conversation orientation and conformity orientation can intersect in four different ways, creating four different family types: consensual, pluralistic, protective, and laissez-faire. These traits may lead to varying degrees of openness to having end-of-life discussions within the family unit.

Previous work in this area shows that high conversation orientation may be associated with greater comfort among middle-aged and older adults in having end-of-life conversations whereas high conformity orientation is associated with less comfort in having end-of-life conversations.⁴¹ The FCPT has been used to anticipate and describe interpersonal communication; and to predict conflict avoidance and family interaction while under stress or engaged in conflict.^36,38 It is well-positioned to aid in understanding end-of-life discussion within families. However, these studies did not seek to understand family communication in end-of-life decision-making within the context of chronic illness. The chronic illness trajectory is common, ambiguous, and challenging.^1,4 Previous work often focuses on the patient’s experience rather than family members’ perception of end-of-life experiences. This study aims to address this gap in understanding as family members often make end-of-life decisions on behalf of their loved ones.

Utilizing surveys of those who have loved ones who died in hospice, this study uses the RFCP to assess how families’ conversation and conformity orientation (spontaneity of conversation and hierarchical rigidity) form four family communication patterns (consensual, pluralistic, protective, and laissez-faire) and may be associated with the number and timing of end-of-life discussions. Consistent with the family communication literature, it is expected that families with both consensual and pluralistic communication types will report more end-of-life (EOL) discussions while protective and laissez-faire communication types will report less.

Methods

This study was approved by the University of Delaware Institutional Review Board (IRB, #1702282-1). Non-probability sampling is often used in quantitative research in the social sciences.^42,43 Study participants were recruited through social media. A study flier was shared on the first author’s personal Facebook page. Social media contacts were encouraged to share the study link across their social media platforms until a study sample of >50 unique participants was reached.

Participants’ responses were recorded through REDCap, an electronic data collection platform. The REDCap survey included study information including inclusion criteria, aims, and survey length. On the first page that they encountered, prospective participants answered a series of questions related to inclusion criteria. If their responses were not consistent with meeting inclusion criteria, conditional logic was used to automatically conclude the survey. Next, the informed consent page of the survey notified participants that they could choose which study questions to answer and that they could leave the study at any time. Participants provided informed consent by reading this notification and documenting their understanding. Participants were compensated with a $25 gift card for their participation in this study.

Inclusion criteria included being a family member of a loved one who was age 50 or older, died within the last two years, and was enrolled in hospice care with a chronic condition. Ages 50 and older were selected to capture an older-adult population. A two years and less post-mortem timeframe was selected to minimize recall error over time.^44–46 Hospice care could have occurred at any hospice site. Inclusion criteria also included personal familiarity with their loved one’s hospice care and end-of-life experience, defined as the last four weeks of life up to and including death. Familiarity was defined as study participants’ self-report of being informed about and physically present during their loved one’s hospice care and end-of-life experience. The survey reached 205 adults, with 87 meeting inclusion criteria, ultimately resulting in n = 56.

Measures

In this study, family communication was measured by the Revised Family Communication Pattern instrument (RFCP), a valid and reliable measure for determining and describing inter-personal communication.^36,39 The RFCP was developed in 1988 as an expansion of the previously developed Family Communication Pattern instrument.⁴⁷

The RFCP consists of two sets of 26-item, Likert scale questionnaires that are used to assess the conversion and conformity orientations of children and parents. In this study, the Parent Version was also used for spouses and the Children’s Version was used for non-spouse family members. The two versions ask the same questions, but slightly alter phrasing to reflect whether applicable to parents or children.⁴⁸ Separate analyses of the Parent and Children’s scales are not required.⁴⁸

The Children’s Version was used for non-spouse family members of the deceased loved one and the Parent Version was used for parents/spouses/partners of the deceased loved one until instrument instructions were sufficiently modified for the study aims. One version was automatically provided via conditional logic to each participant, based upon their categorical answer to a previous question about their relationship to the deceased. The RFCP comes with the instructions ‘We would like to learn more about how you communicate in your family’.⁴⁸ Friends of the primary investigator who were given the Children’s Version to complete expressed confusion about which household to describe when completing the survey – their childhood household, or the home that they have established as an adult. The instructions were subsequently clarified with a preceding statement that is both highlighted and in bold text, ‘These next questions are about how your family communicated in your childhood home; or if you are the grandchild/similar family member, in your loved one’s home.’ Similarly, the instructions on the Parent Version were clarified to read ‘These next questions are about how your family communicates in the home that you established as a parent/spouse/partner [of the deceased loved one].’

The original 1–5 Likert scale was maintained within the original instructions. ‘We would like to learn more about how you communicate in your family. Please use a scale of 1 to 5 with 5 meaning strongly agree and 1 meaning strongly disagree to rate the following:’⁴⁸ Answers to the Likert scale were provided via radio buttons, allowing for the selection of a single answer. To ensure that participants correctly remembered which radio button corresponds to which categorical answer, the names that correspond with each category were repeated after every sixth or eighth question, allowing for constant visualization of the scale.

The Cumulative Illness Rating Scale

The type and severity of chronic disease may affect communication at the end-of-life and decisions regarding end-of-life care.⁴⁹ As such, chronic illnesses and cumulative disease burden were measured by completion of the Cumulative Illness Rating Scale (CIRS).^50,51 To better facilitate independent online administration of the CIRS, medical jargon was accompanied by common terminology.

Data analysis

IBM SPSS version 26 was used for descriptive analysis.

Results

As shown in Table 1 below, the mean age of participants was 45.7 years old. Most of the participants were female (92.9%), non-Latino White (78.6%), and had attended some college or earned a college degree (53.6%). Forty-one percent of participants had earned graduate degrees. Most participants (80.4%) were either the adult child or grandchild of their loved one who died in hospice. The mean age of loved ones who died in hospice was 77.7 years old. Loved ones who died in hospice were most likely to be female (60.7%), and non-Latino White (78.6%) with less than a college degree (54.5%).

Table 1.

Descriptive analysis of the sample (n = 56).

Demographic characteristics	Participant					Loved one in hospice
Demographic characteristics	%	n	M	SD	(Range)	%	n	M	SD	(Range)
Age (years)			45.71	11.58	(22–70)			77.73	10.85	(55–96)
Male, % (N)	7.1	4				39.3	22
Race/Ethnicity, % (N)
Non-Latino White	78.6	44				78.6	44
Non-Latino Black	19.6	11				19.6	11
Other	1.8	1				1.8	1
Education in years, % (N)
Less than High school, High school, GED	5.4	3				55.4	31
Some college, College degree	56.6	30				37.5	21
Graduate education	41.1	23				7.1	4
Relationship to loved one in hospice
Spouse, Significant other, Partner	8.9	5
Adult Child, Grand child	80.4	45
Sibling, other Family member	10.7	6

As shown in Table 2 below, loved ones who died in hospice were diagnosed with 1–6 chronic illnesses, with most loved ones having one or two chronic illnesses (76.8%). There was significant variability across CIRS total pathology scores with responses ranging between 2 and 39. The mean total pathology score was 15.83 with a standard deviation of 7.76. These results are consistent with other work where 98% of adults age 65+ reported two or more chronic illnesses and consistent with CIRS scores in this patient population (ranging from 0 to 30).⁵² CIRS scores >25 are consistent with severe, multi-system pathology, indicating that at least 77% of the loved ones in this study were not severely impaired during their last two years of life.⁵⁰

Table 2.

Number of chronic illnesses and CIRS total pathology score (n = 56).

Variables	%	n	M	SD	(Range)
Number of chronic illnesses reported			1.3	1.10	(1–6)
1	51.8	29
2	25.0	14
3	14.3	8
⩾4	8.9	5
CIRS Total Pathology Score (instrument range 0–56)			15.82	7.76	(2–39)
2–10	30.4	17
11–20	46.4	26
21–30	21.4	12
31–39	1.8	1

As shown in Table 3 below, the mean continuous conversation score on the RFCP was 51.28 and the mean continuous conformity score on the RFCP was 32.76. In this study, individual participants’ mean conversation score was 3.42, consistent with previous work in this area.⁵³ On the RFCP scale, 3.42 is a moderate score, consistent with ‘neutral’. In this study, the individual participants’ mean conformity score was 2.98, also consistent with previous work in this area.⁵³ On the RFCP scale, a score of 2.98 is also a moderate score, consistent with ‘neutral’. Consistent with the literature, this study’s population means were used to determine high versus low conversation and conformity.³⁶ According to participant responses, about 11% of families in this study were Consensual, 42.86% were Pluralistic, 39.29% were Protective, and 7.14% were Laissez-Faire.

Table 3.

Descriptive analysis of the independent variables (n = 56).

Variables	%	n	M	SD	(Range)
Independent variables
RFCP Conversation (instrument range 15–75)			51.29	13.50	(17–74)
RFCP Conformity (instrument range 11–55)			32.76	8.77	(14–51)
Family communication pattern type
Consensual	10.71	6
Pluralistic	42.86	24
Protective	39.29	22
Laissez-Faire	7.14	4

As shown in Table 4 below, all (100%) consensual families reported having end-of-life conversations and three (50%) reported conversing 10 or more times. One (4%) pluralistic family did not converse, 10 (41.6%) reported conversing 3–4 times, and six (25%) reported conversing 10 or more times. Two (9%) protective families did not converse, eight (36.6%) reported conversing 3–4 times, and three (13.6%) reported conversing 10 or more times. One (25%) laissez-faire family did not converse, one conversed 3–4 times, and one conversed 10 or more times.

Table 4.

Frequencies of reported number of end-of-life conversations per family type (n = 56).

Family type	Number of conversations					Total
Family type	0	1–2	3–4	5–6	10+	Total
Consensual	0	1	2	0	3	6
Pluralistic	1	3	10	4	6	24
Protective	2	5	8	4	3	22
Laissez-Faire	1	1	1	0	1	4
Total	4	10	21	8	13	56

As shown in Table 5 below, most (66%) loved ones were enrolled in hospice for less than 30 days and 33.9% were enrolled for a week or less. Hospice services are available for up to six months after a terminal diagnosis, yet most participants (66%) reported that their loved one’s hospice enrollment occurred at the right time. Meanwhile, about 27% reported that hospice occurred too late, and 7.1% reported that hospice occurred too soon.

Table 5.

Timing of hospice (n = 56).

Variables	%	n
Length of Time in Hospice (range: 1 day to 18 months)
1–7 days	33.9	19
8–30 days	32.1	18
31–90 days	14.3	8
91–182 days	8.9	5
⩾183 days	10.7	6
Participant opinion of timing of hospice enrollment
Occurred at the right time	66.1	37
Occurred too late	26.8	15
Occurred too soon	7.1	7

Discussion

This cross-sectional study of adults whose older, chronically ill loved ones died in hospice found that the majority of families’ scores were indicative of pluralistic (42.86%) or protective (39.29%) communication styles. These styles are consistent with both open (pluralistic) and closed (protective) end-of-life conversations. In this study, participants recalled having between 0 and 50 end-of-life discussions, with most respondents (37.5%) reporting 3–4 end-of-life discussions. As expected, the preliminary results within this study suggest that consensual and pluralistic families may have more frequent end-of-life conversations than protective and laissez-faire families.

Consensual families (high conversation orientation and high conformity orientation) often prioritize conflict resolution and problem solving.^35,39 Pluralistic families (high conversation orientation and low conformity orientation) favor open discussion and ideas are assessed upon their relative merit, rather than the social position of the person who shares them.³⁵ Conflict is both tolerable and resolvable.³⁵ The conversational qualities of consensual and pluralistic family types facilitate the discussion of difficult and taboo subjects.

Meanwhile, protective families (low conversation orientation and high conformity orientation) do not have open discussion and deference to parental authority is prioritized.³⁵ Inter-personal conflict is avoided.³⁵ Laissez-Faire families (low conversation orientation and low conformity orientation) communicate infrequently and superficially. Decisions are often independently made without familial discussion.³⁵ The conversational qualities of both protective and laissez-faire family types do not facilitate discussion of difficult and taboo subjects.

A study recently used the RFCP to assess how comfortable middle-aged and older adults are with discussing end-of-life.⁴¹ Those findings are consistent with an assumption of this study, that higher conversation orientation and lower conformity orientation would be associated with increased conversation.⁴¹ Although this is a small study, findings are also consistent with previous work in terms of mean conversation and conformity scores on the RFCP; the number and severity of chronic illnesses per CIRS scores in the patient population, and the length of time that loved ones were in hospice.^28,53 These consistencies support the reliability of this study.

Hospice stays of relatively short duration are consistent with the literature.²⁸ In this study, 66% of loved ones were enrolled in hospice for 30 days or less and 33.9% were enrolled for seven days or less. Hospice care is recommended when life expectancy is prognosed at six months or less, yet 66.1% of respondents reported that hospice enrollment occurred at the right time.^25,26 This is consistent with study findings in which families endorsed the timeliness of similarly short hospice enrollment.⁵⁴

Limitations and future directions

The FCPT was theoretically a good fit for exploring the conversational qualities of recently bereaved families. However, there are some limitations of the study to consider. First, this study utilized non-probability sampling and findings may not be generalizable to all loved ones who died in hospice and their families. At the time of this study, social isolation protocols during the COVID-19 pandemic necessitated the online administration of test materials.⁵⁵ This presented challenges as it became necessary to identify and remove any residual ambiguity from test instructions.⁵⁵ This would ensure that instructions were accurately understood without the availability and benefit of immediate, in-person clarification.⁵⁶ All the participants in this study were able to navigate an online forum for electronic survey data collection. Thus, this study may not capture the experiences of those without technology access and ability.

While preliminary results suggest that consensual and pluralistic families may have more frequent end-of-life conversations than protective and laissez-faire families, the four family communication types are not equally represented within this sample. Larger, more representative samples are needed before drawing conclusions about family type and frequency of end-of-life discussion. Finally, study participants were predominately female, non-Latino White and educated. Additional work in this area with a more heterogeneous sample is needed to understand how study findings may vary by familial, socioeconomic, and other social positions.

Next steps include investigating if there is a connection between family communication patterns, timing of end-of-life conversations, timing of hospice enrollment, and the quality of the dying experience. Additional confounding variables to consider include the duration of chronic illness. In time, study findings may be used by clinicians to facilitate earlier identification of and intervention for families who are at risk for poor end-of-life communication and outcomes. This research will help to meet a need that was previously identified through meta-analysis of barriers to family communication about end-of-life.²¹

Conclusion

It is important that patients’ end-of-life wishes are articulated and honored. Families who are at risk for poor or delayed end-of-life discussion should be recognized, considered, and offered professional help to facilitate honest and critical conversations. This should happen as early as possible within the chronic disease trajectory, ideally within the primary care setting.

Despite limitations, these study findings are consistent with previous literature and suggest that there may be a relationship between family communication pattern type and proclivity toward end-of-life conversation within families. This is a first step that supports further evaluation of whether the FCPT can be uniquely used to predict which families may be at increased risk for ineffective or delayed end-of-life communication. Future work can examine if protective and laissez-faire communication styles are indeed associated with less end-of-life conversation. If so, healthcare providers may use those findings and the RFCP to assess families of chronically ill patients for increased risk for poor communication. Upon providing communication-fostering intervention, hospice enrollment may occur sooner, and the dying experience may be improved.

Footnotes

Acknowledgements

None.

Declarations

ORCID iDS

Melanie A. Horning

Mary Elizabeth Bowen

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Characterizing end-of-life communication in families

Abstract

Background:

Objective:

Design:

Methods:

Results:

Conclusion:

Keywords

Introduction

Hospice

Theoretical framework

Methods

Measures

The Cumulative Illness Rating Scale

Data analysis

Results

Discussion

Limitations and future directions

Conclusion

Footnotes

Acknowledgements

Declarations

ORCID iDS

References