Vital Conversations with Family in the Nursing Home: Preparation for End-Stage Dementia Care

Abstract

Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits. This 6-month, prospective, randomized trial tested the effect of an intervention consisting of a face-to-face, structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia. A comparison group received only social contact via telephone. Structured conversations between a palliative care team and intervention group family members included goals of care and how best to achieve those goals, and provision of psychosocial support. Psychosocial support was also provided via telephone at three 2-month intervals. Family members participated in three telephone interviews: baseline, 3, and 6 months. Specific advance directives for persons with dementia were extracted from medical records. Results showed that intervention families had higher satisfaction with care than comparison families at the 6-month time point, and they were more likely to have decided on medical options listed in residents' advance directives (Do Not Resuscitate, Intubate, Hospitalize) over time. Study findings reinforce the need for increased education and support for families around issues of end-of-life care decisions for advanced dementia.

KEYWORDS:

• advance directives
• advanced dementia
• end-of-life communication
• treatment discussions

INTRODUCTION

Providing quality end-of-life care for nursing home residents with dementia is a growing concern. Over 70% of long-term nursing home residents have dementia (Center to Advance Palliative Care, 2008) and two-thirds of dementia-related deaths occur in nursing homes (Mitchell, Teno, Miller, & Mor, 2005). Further, the chronic, progressive, cognitive, and physical decline that characterize this life-limiting illness are often compounded in its advanced stage by numerous comorbidities and acute events (e.g., pneumonia). In this article, “advanced” dementia is defined as a severe level of impairment; with cognitive performance scale scores of 4–6 in the Minimum Data Set (MDS; Morris et al., 1994). The MDS is a standardized tool that gathers information for conducting comprehensive assessment of nursing home elders including physical, functional, and psychosocial functioning.

Use of Life-Sustaining Treatments Among People with Dementia

Many nursing homes respond to care needs with the routine use of technologies considered by some to be burdensome in advanced dementia (Mitchell et al., 2012; Sachs, Shega, & Cox-Hayley, 2004; Teno et al., 2012; Volicer, 2005) such as artificial nutrition and repeated hospitalization. Aggressive medical care with advanced disease has been shown to be associated with poorer outcomes for both patients and families (e.g., Wright et al., 2008) and so use of a palliative care or hospice model with an emphasis on comfort may be considered more appropriate to meet these complex patients' needs. Moreover, because palliative care is intrinsic to good dementia care (Martin & Sabbagh, 2011), incorporating a palliative approach soon after admission can have major, positive implications for the relative and family members. For example, a palliative approach is associated with positive symptom management for residents and greater satisfaction with care on the part of family members. Family members themselves may also experience better well-being when they are more satisfied with their relative's care. Six-month prognostication is not necessary for the provision of palliative care services as in hospice care. Palliative care is interdisciplinary and focuses on maximizing physical and psychosocial comfort for the dementia patient and family (Carter & Chichin, 2003; Meier, Lim, & Carlson, 2010). This should be the standard of care for nursing home residents with dementia, especially given prognostic difficulties of dementia's trajectory and the 6-month life-expectancy requirement for hospice (Meier et al., 2010). Nursing homes have a wide range of challenges in end-of-life care (e.g., communication, trust issues) compared to other settings such as in-patient hospice settings and community programs (Kehl, Kirchhoff, Kramer, & Hovland-Scafe, 2009).

Volicer and colleagues have described the clinical and ethical dilemmas of treating disease symptoms in advanced dementia and instead emphasized the use of comfort (Hurley, Mahoney, & Volicer, 1995; Volicer, 1986, 2005). As the dementia trajectory nears its end, a number of treatment decisions may be considered including the use of resuscitation, hospitalization, artificial nutrition and hydration, antibiotics, diagnostic tests, and analgesics. The universal goal of care for advanced dementia is to maximize comfort and treatments and interventions that will address this must be a priority. Putting a Do Not Resuscitate (DNR) order in place is recommended since resuscitation is ineffective in this population (American Medical Directors Association [AMDA], 2003). Little can be gained with hospitalization, as the burden associated with hospital transfer can far outweigh any benefit with rare exceptions, such as hip fracture (Mitchell et al., 2012). Thus, a Do Not Hospitalize (DNH) order is recommended for persons with advanced dementia (Mitchell et al., 2012; Volicer, 2005). The use of artificial nutrition and hydration is strongly discouraged in advanced dementia care (Teno et al., 2011). Recent recommendations continue to support oral feeding to the extent possible (Coyne & Lyckholm, 2010; Hospice and Palliative Nurses Association [HPNA], 2011; Kuo, Rhodes, Mitchell, Mor, &Teno, 2009; Mitchell et al., 2012). Not only do feeding tubes fail to affect survival or prevent aspiration pneumonia, they are related to increased risk of pressure ulcers among residents with advanced dementia (Teno et al., 2012). In the context of maximizing comfort and quality of life, avoiding diagnostic tests is preferred as they are uncomfortable, with results unlikely to guide treatment. Finally, determining pain and discomfort in persons with dementia generally presents a challenge, yet every effort should be made to determine the possible cause of distress (e.g., position, incontinence, pain). While nonpharmacological interventions should be used as appropriate, clinicians recommend liberal use of analgesics if pain is unrelieved by other measures (Gallagher & Long, 2011).

Challenges to Use of Palliative Care with Nursing Home Residents with Dementia

There are barriers to appropriate use of palliative care for persons with advanced dementia including nursing home residents. Family members may not perceive dementia as a terminal illness, perhaps due to its protracted and yet unpredictable course (Sachs et al., 2004). Bern-Klug (2006) discussed the difficulty of recognizing “possible dying” and identified triggers that can stimulate end-of-life care discussions, such as health status decline of older adults. Overall, staff and family members may find it difficult to openly discuss death and dying, and staff may not feel confident answering specific questions about end-of-life care (Davis, Shanahan, Campbell, Hegarty, & McCarthy, 2011). Too often, death is looked upon as a medical failure instead of as a part of life (Bomba, Morrissey, & Leven, 2011). Lack of knowledge regarding the person with dementia's wishes is also likely. It is ideal to discuss residents' end-of-life care wishes while they have the capacity to make decisions, however, this may not always be possible depending on the trajectory of the illness. Family members may face major care decisions that arise during an acute episode and having these conversations only at a crisis point indicates inadequate advance care planning (Bomba et al., 2011). A significant barrier for family members regarding making informed decisions is a lack of education and understanding about treatment burden and benefits, and palliative care recommendations for advanced dementia (Volicer, 2005). Information from a variety of sources facilitates informed decision making. Having had end-of-life conversations is associated with less aggressive care near death (Wright et al., 2008). While it is important for family members of people with dementia to receive information about prognosis from their family member's physician, social workers also have a central role regarding effective communication regarding end-of-life care options and potential conflict resolution among family members as needed. Models of shared decision making have been designed including tools for medical orders for life-sustaining treatment that can be used with family members to make health care decisions when the patient is unable to do so (Bomba, Kemp, & Black, 2012; Sabatino, 2010; Tolle, Tilden, Nelson, & Dunn, 1998).

The purpose of this study was to assess the effect of information and support provided to family members about the pros and cons of treatment decisions that may arise as their relative's severity of dementia increases. Outcomes include family members' ratings of satisfaction with their relative's care and their own well-being (life satisfaction, depressive symptoms). This information will address families' experiences of these interactions with palliative care clinicians in the nursing home setting in advance of acute episodes. Specifically, we examined the use of an intervention consisting of a structured conversation, with telephone follow-up, about end-of-life care options with families of nursing home residents with advanced dementia. A comparison group received social contact via telephone and outcomes for both groups were analyzed and compared.

METHOD

Sample and Procedures

The study took place in a large skilled nursing facility in the Northeast. The sample was drawn from family members of current residents with advanced dementia. Eligibility criteria for these nursing home residents included dementia diagnosis, advanced dementia (cognitive performance scale score = 4, 5, 6), English or Spanish speaking, and not currently receiving hospice care (end-of-life care options would have been reviewed). The family members contacted for participation were listed as primary family/friend contact, including the health care agent when available (51% of primary contacts). These primary contacts will hereafter be termed “surrogates.”

Of the 214 surrogates contacted, 110 participated (51% response rate). Surrogates were given a baseline interview, then randomly assigned to either the intervention (n = 58) or comparison group (n = 52). In addition to the 110 baseline interviews, 96 surrogates completed a Time 2 interview (3 months later), a 12.7% attrition rate. Ninety surrogates completed a Time 3 interview (6 months after baseline), a 15.1% attrition rate between Time 2 and Time 3. Almost all were English speaking, with three Spanish speaking (two—intervention, one—comparison). Four residents died prior to Time 2, and 12 died prior to Time 3. Ten follow-up interviews were conducted with surrogates of these 16 (1 at Time 2, 9 at Time 3).

Telephone interviews occurred at three points: baseline, 3, and 6 months after baseline (or 4–6 weeks after resident's death if it occurred). The researcher who conducted follow-up interviews was blind to study condition. Surrogates with data for all time points are included in analyses (40 comparison, 47 intervention). Missing data were handled by the use of listwise deletion. There were no statistically significant differences between the 23 surrogates who dropped out and the 87 with data at all time points on sex, race, marital status, or employment status. The study was approved by the Institutional Review Board located at this facility. Family members provided informed consent for themselves, and surrogate consent for residents.

Intervention

The palliative care team (PCT) included two certified palliative medicine physicians and a palliative care social worker. While palliative care teams often include nurses, a palliative care nurse was not available at the study facility. The PCT members in this study were full-time staff members in the facility with other clinical and administrative duties. Having staff specifically trained in palliative care facilitates the communication that is important for making end-of-life care decisions (Bomba et al., 2011; Weiner & Efferen, 2005). One of the physicians and the palliative care social worker utilized a structured (details listed below), face-to-face meeting with each intervention family member after observing the family member and speaking with the primary care team about his/her condition. A Spanish-speaking social worker was present when needed. Specifically, using an “ask-tell-ask” model (Tulsky, 2005), the PCT members asked family members what they understood about dementia, where they think their relative is in the disease process, and what they expect as the disease progresses. Further, the PC physician shared the assessment of the resident's condition, and the PCT discussed the family's goals of care for the resident, made recommendations of how to achieve those goals, such as putting advance directives in place and provided psychosocial support, such as empathic and active listening and rephrasing to ensure the family member was being “heard.” Finally, the PCT provided family members with comprehensive, evidence-based information about the risks and benefits of potential treatments that can be used in advance of the need to make decisions in a face-to-face meeting at the facility. These meetings took an average of 47 minutes (range = 20–75 minutes) and included the following topics: (a) resuscitation, (b) hospitalization, (c) artificial nutrition and hydration, and (d) pain and symptom management. If specific care-related decisions were made during the meeting, such as additions to advance directive decisions, the PCT members told family members that this information would be communicated to and addressed by their relative's primary care team (physician, nurse, social worker). While the PCT was available after the initial face-to-face meeting for further clarification of issues or assistance with decision making and support as needed, only three family members requested additional information. Also, as part of the intervention, the palliative care social worker contacted family members every 2 months via telephone, after checking on the resident (to note their condition), to ascertain the family member's level of emotional comfort. Thus they were able to address potential concerns they had about their relative. Each of these three telephone calls lasted an average of 10 minutes. These calls, made by the palliative care social worker, were intended to be a continuation of any issues discussed in the intervention meetings based on topics the family members wanted to discuss.

Comparison with Social Contact

The comparison group did not receive the face-to-face meeting or follow-up calls from the PCT. Instead, they received “routine care” provided to persons with dementia in this particular nursing home. This is variable in terms of treatment offered, communication with family members, and any efforts toward palliative care (unstructured). Standardized interactions with family members are not a prescribed part of this routine care. Thus, to control for the effect of greater attention to and interaction between staff and families in the intervention group, nonspecific social telephone contact was included in the comparison condition at baseline and 2-month intervals. Research assistants were trained to use active listening without providing advice or interaction meant to be therapeutic. They monitored the nature and length of these call as they checked in with family members in the comparison group and discussed whatever the family member brought up during the conversation. These calls averaged 11 minutes at baseline, and 9 minutes for each of 3 follow-up calls.

Measures

RESIDENT DATA

Resident data were obtained from the medical record. Data from the Medical Order for Life-Sustaining Treatments (MOLST) form (DOH-5003) used in the state of New York were collected such as regarding resuscitation, intubation, hospitalization, feeding tube, intravenous lines, antibiotics, and comfort care.

SURROGATE CARE RATING DATA

Surrogate variables included ratings of the relative's care assessed at three time points: at entry into the study, 3- and 6-months after baseline (time frame = past 3 months). If the resident died during the study, the time frame was the last few months of life. The perception of resident's symptom control was assessed with the Symptom Management at the End-of-Life in Dementia Scale (Kiely et al., 2006; Volicer, Hurley, & Blasi, 2003). The frequency of nine symptoms is rated on a 6-point scale (never–daily; range = 0–45; high score = better symptom control; e.g., anxiety, agitation, calm, pain). Satisfaction with care was assessed with a single item rating from 0 (worst possible care) to 10 (best possible care), and the Satisfaction with Care at End-of-Life in Dementia Scale (AMDA, 2003; Volicer et al., 2003). For the latter, the frequency of 14 items is rated on a 4-point scale ranging from strongly agree to strongly disagree. Possible scores range from 0–42 (higher scores = greater satisfaction with care).

SURROGATE WELL-BEING DATA

Ratings of surrogates' own well-being were also obtained. The Patient Health Questionnaire (PHQ-9) was used to assess surrogates' rating of their own depressive symptoms over the past 2 weeks (Kroenke, Spitzer, & Williams, 2001). Possible scores on this 9-item scale range from 0–27 (higher scores = higher depression). The Satisfaction with Life Scale (Diener, Emmons, Larsen, & Griffin, 1985) was used to assess surrogates' life satisfaction. The scale has 5 items rated on a 5-point Likert scale with scores ranging from 5 to 25 (higher scores = higher satisfaction).

RESULTS

Descriptive Statistics

Demographic information by group for nursing home residents is listed in Table 1. The intervention and comparison groups showed no statistically significant differences in age, gender, race, cognitive performance scores, or functional disability. Residents were mostly female, with an average age of 86 and multiple ethnic groups were represented. Average length of residence in the facility was 3.8 years (SD = 3.3 years) for the comparison group and 4.8 (SD = 3.9 years) for the palliative care intervention group (PCI) group, and these numbers were not significantly different. Also, 12.5% of residents in the comparison group and 19% of residents in the intervention group were enrolled in hospice over the course of the 6-month study period. Hospice referral did not differ by group in terms of statistical significance. Hospice enrollment over the study period was not related to scores on outcome variables at Time 2 or Time 3.

TABLE 1 Resident Age, Race, Cognitive Status, and Functional Ability

Demographic variables	Intervention (N = 47)	Comparison (N = 40)
	Mean (SD)	Mean (SD)
Age (years)	85.7 (6.2)	85.2 (8.5)
	Frequency (%)	Frequency (%)
Female	40 (85.1)	31 (77.5)
Race
Black non-Hispanic	21 (44.7)	18 (45.0)
White non-Hispanic	15 (31.9)	12 (30.0)
Hispanic	11 (23.4)	8 (20.0)
Asian	0 (0)	2 (5.0)
CPS	4.9 (0.9)	4.6 (0.9)
ADL	15.5 (1.9)	15.1 (2.2)

Demographic information for family members is provided in Table 2. Mean comparisons were conducted. Findings showed the two groups did not differ in terms of statistical significance regarding age, gender, race, marital or employment status, education, or relationship type. Most family members were female, varied in race, and one-half married. Educational status was fairly high with over one-half having a college degree. About 70% reported that they felt very close to their relative and about one-half reported that they visit their relative once a week or more.

TABLE 2 Surrogate Age, Race, Marital Status, Relationship, and Reported Closeness to and Contact with Relative

	Intervention (N = 47) Mean (SD)	Comparison (N = 40) Mean (SD)
Age (years)	59.6 (12.3)	58.9 (11.9)
	Frequency (%)	Frequency (%)
Female	37 (78.7)	32 (80.0)
Race
Black non-Hispanic	20 (42.5)	16 (40.0)
White non-Hispanic	15 (31.9)	12 (30.0)
Hispanic	11 (23.4)	9 (23.0)
Other	1 (2.1)	3 (7.0)
Marital Status
Never married	8 (17.0)	9 (22.5)
Married	24 (51.0)	22 (55.0)
Widowed	7(14.9)	2 (5.0)
Divorced/separated	8 (17.0)	7 (17.5)
Education (college+)	26 (55.3)	26 (65.0)
Employment (employed)	22 (46.8)	26 (65.0)
Relationship to elder
Child	20 (42.5)	28 (70.0)
Spouse	3 (6.4)	3 (7.5)
Friend	4 (8.5)	1 (2.5)
Other	20 (42.5)	8 (20.0)
Closeness to elder (very close)	33 (70.2)	30 (75.0)
Contact with elder (1× per week+)	19 (40.4)	22 (55.0)

Effect of Group and Time on Outcomes

To test hypotheses that the PCI group will report better outcomes than the comparison group, a series of 2 (group) × 3 (time) repeated measures analysis of variance (ANOVA) tests were conducted. Specifically, five 2 × 3 repeated measures ANOVAs were conducted, one for each of the five outcome variables. This included three care rating measures (care satisfaction scale, symptom management scale, single-item care rating) and two outcomes for surrogates themselves (depressive symptom scale, life satisfaction scale). Means by group at each time point for all dependent variables are shown in Table 3 (listwise sample). While there were a few missing cases for the dependent variables for these analyses, the symptom management scale had the most missing cases. Analyses were conducted using SPSS 19.0 (IBM Corp., Armonk, NY, USA). For the presentation of results, “significance” refers to statistical significance.

TABLE 3 Descriptive Statistics for Outcome Variables by Group

Variables	n	Baseline	Time 2	Time 3
		Mean (SD)	Mean (SD)	Mean (SD)
Intervention group
Care rating outcomes
Care satisfaction	45	27.3 (6.7)	30.2 (6.4)	30.6 (7.2)
Symptom mgmt.	31	28.9 (9.3)	30.4 (9.9)	30.8 (9.7)
Care rating	45	7.7 (1.4)	7.9 (1.4)	8.2 (1.3)
Surrogate outcomes
Depressive symptoms	47	4.2 (4.9)	4.0 (4.5)	3.8 (4.1)
Life satisfaction	45	18.2 (5.1)	18.5 (5.5)	17.9 (5.7)
Comparison group
Care rating outcomes
Care satisfaction	36	27.7 (8.9)	30.6 (7.0)	28.0 (9.7)
Symptom mgmt.	34	29.5 (8.1)	30.4 (8.7)	30.6 (8.4)
Care rating	39	7.6 (1.9)	7.8 (1.6)	7.3 (2.1)
Surrogate outcomes
Depressive symptoms	39	4.5 (3.4)	3.3 (2.9)	4.5 (4.1)
Life satisfaction	36	18.6 (5.1)	19.4 (5.3)	18.5 (5.8)

Results for the care satisfaction scale showed a significant main effect for time, F(2, 78) = 8.70, p < .001, but not group; and a significant time × group interaction, F(2, 78) = 3.07, p < .05. Care satisfaction scores were significantly higher at Time 2 compared to Time 1 (3 months prior) across both groups, but scores were not significantly different between groups at Time 3 (6 months after baseline). The significant interaction showed that for the PCI group, care satisfaction scores increased from Time 1 to Time 2 and stayed significantly higher at Time 3. Yet, for the comparison group, while care satisfaction scores also increased from Time 1 to Time 2, scores had a significant decrease from Time 2 to Time 3.

Results for the single-item care rating (0–10) did not show any significant main effects, but there was a significant interaction, F(2, 81) = 3.19, p < .05. The only significant difference between groups was at Time 3; the PCI group had a significantly higher care rating than the comparison group.

Results for the symptom management scale showed no significant main effects by group or time, and no significant interaction. Also, regarding surrogate outcomes, results showed no significant main effects and no significant interactions for either depressive symptoms or life satisfaction scale scores.

Effect of Time on Advance Directives for Each Group

McNemar's test was used to test the hypothesis that residents in the PCI group had more advance directives in place over time. This was not expected in the comparison group. The two time periods examined for comparison include data from 6 months prior to the baseline interview, compared to data from 6 months after the baseline. Table 4 shows the proportion of each group who had documented decisions about aspects of end-of-life planning over time.

TABLE 4 Advance Directives by Group

Type of advance directive	Intervention (N = 47)		Comparison (N = 40)
	Pre (%)	Post (%)	Pre (%)	Post (%)
MOLST in chart	78.7	100.0**	77.5	87.5
DNR	72.3	93.6**	70.0	75.0
DNI	57.4	83.0***	55.0	60.0
DNH	10.6	30.0**	20.0	25.0
No feeding tube	36.2	57.4**	30.0	32.5
No IVs	8.5	12.8	6.4	6.4
No antibiotics	4.3	8.5	2.5	2.5
Comfort care	8.5	19.1*	12.5	17.5

Regarding end-of-life decisions in place over time, McNemar tests showed that while there was no change over time in variables for the comparison group, there was statistically significant change over time in almost every variable for the PCI group. The PCI group was statistically significantly more likely to have a MOLST added to their relative's chart over the course of the study, and have added orders for 4 of the 7 decisions in the MOLST including: DNR, Do Not Intubate (DNI), DNH, No Feeding Tube, and with a trend for an increase in comfort care. Decisions for “No antibiotics” or “No IVs” did not change over time for the PCI group.

Discussion

While residents with dementia were sampled based on poor cognitive and functional status, only 14% died over the study period (6 months) showing the challenge of prognostication for advanced dementia. Results showed that surrogates who received the palliative care intervention (structured conversation about end-of-life care with follow-up telephone calls for support) had significantly higher satisfaction with care scores, and had documented significantly more end-of-life care decisions in their relative's medical record (MOLST) over time. These findings show a significant, positive effect of a single, in-depth meeting of surrogates with the palliative care physician and social worker with three follow-up telephone calls for support. Intervention family members received a detailed report on the status of their relatives, were asked what they thought about their relative's condition, and received information about the pros and cons of various treatments that may be suggested in cases of advanced disease.

The third time point stands out regarding care satisfaction outcomes. Both groups increased in care satisfaction 3 months after baseline, but only the intervention group maintained that level at 6 months with the comparison group showing a decrease in satisfaction with care scores by the third time point. Also, single-item care ratings showed a significant difference between groups only at the third time point with the intervention group having higher care ratings than the comparison group. The advantage of having in-depth discussions of end-of-life care options may be more valuable over time as the condition of residents with advanced dementia worsens. That is, family members who have been equipped with information about pros and cons of treatments will be better prepared to deal with situations as they arise, to know what questions to ask. For some, that initial, in-depth discussion may be enough, while for others, that initial conversation may have set the stage to feel comfortable initiating additional in-depth discussions over time to ask any other questions as the need arises.

Avoiding prolongation of suffering and making patients as comfortable as possible is important with advanced dementia, thus understanding the risks and benefits of treatment options is essential (Mitchell et al., 2012); only then can surrogates be informed partners in care for their relatives. The increase found in the proportion of residents with documentation of multiple end-of-life symptom control, greater satisfaction with their relative's care and have better well-being compared to the comparison group care decisions in the intervention group, is a step in this direction. Research has shown that documentation of advance directive discussions does increase with focused efforts (DeLaGarza, Andersen, Mach, & Bennett, 2001). In this study, end-of-life communications were accomplished in a broad framework that discussed goals of care for residents and provided emotional support for family members which is highly recommended (Tulsky, 2005).

Findings did not show an effect of group status on ratings of symptom management. While most surrogates reported seeing their relatives once a week or more, some did not respond to these items, perhaps because they were not comfortable rating their daily care in terms of the symptoms we assessed (depression, skin breakdown, resistance to care). These symptoms may also be difficult to discern given the advanced nature of disease. For surrogates who did complete these items, average symptom management scores were relatively high for both groups.

Finally, well-being outcomes for surrogates were not affected by group status. We thought that family members themselves may also experience better well-being when they are more satisfied with their relative's care. Actually, depression scores were relatively low and life satisfaction scores were relatively high in this sample. Perhaps future palliative care intervention studies meant to impact family member well-being should target those surrogates who have been identified with poor well-being at baseline. Also, additional outcome variables could be used such as level of burden. It may be the case that having to face end-of-life decisions is particularly relevant to levels of burden faced by caregivers. Thus, an intervention that assists this type of decision making may indeed have an impact on the perceived level of burden.

Study Strengths and Limitations

Strengths of the study include its design—including its prospective nature, random assignment to study group, and having a comparison group. However, there are some study limitations. We do not know about the care satisfaction of the family members who chose not to participate in the study, or how that may differ from study participants. Further, study findings may only be applicable to the particular nursing home residents and family members in this study. The palliative care intervention model used in this project was only possible due to the presence of full-time physicians in the nursing home including palliative medicine physicians. This is not typical of nursing homes in general. Finally, because data were not collected for either study group that documented family participation in care plan meetings, we do not know whether or not end-of-life decision making was discussed in this context.

Conclusions and Future Research

While this study included a palliative care team, future research could focus on palliative care interventions that include all members of the clinical care team. All care team members could promote greater discussion of care goals, treatment decisions, and care management along with matching care plans with informed resident and family goals of care for addressing pain, symptom distress, and avoidance of hospitalization. Over two-thirds of nursing home residents have dementia, thus educating family members about the likely trajectory and potential decisions should include early and ongoing care planning and comprehensive discussions about risks and benefits of treatments in advanced disease (Caplan, Meller, Squires, Chan, & Willett, 2006; Monturo & Strumpf, 2007). In this study, family members educated about choices in end-of-life decision making were more satisfied with their relatives' care 6 months later than family members who were not similarly educated. Surrogates who received this intervention in a supportive, caring context were then prepared with information needed for decision making when goals of care were changing. Simply knowing that comfort can be targeted when treatment is ineffective in the face of advanced dementia may give them a sense of peace.

Notes

Note. CPS = cognitive performance scale; ADL = activities of daily living. There are no statistically significant differences between the two groups on any of these variables.

Note. MOLST = Medical Orders for Life-Sustaining Treatment; DNR = Do Not Resuscitate; DNI = Do Not Intubate; DNH, Do Not Hospitalize; IV = Intravenous.

*p < .10. **p < .01. ***p < .001.