Chow E, Connolly R, Wong R, et al. J of Pain & Sympt Manage 2001; 21(6):491-497.

Prepared by: : Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

To determine the positive rate of the CAGE questionnaire in an outpatient palliative radiotherapy clinic and to examine the association between problem drinking, pain control, and analgesic consumption, patients referred for palliative radiotherapy were screened with the CAGE questionnaire and asked to rate their symptom distress using the modified Edmonton Symptom Assessment System (ESAS). The latter instrument uses 11 point numeric scales (0 = best, 10 = worst). Their daily analgesic consumption in oral morphine equivalent as recorded. A total of 128 patients participated in the study. Only 9 patients answered one of the four CAGE questions affirmatively (positive group). All the rest answered negatively (negative group). The mean pain intensity at index site /overall pain was 4.97 ± 3.31 / 3.27 ± 2.76 for the negative group and 6.29 ± 4.42 / 2.89 ± 3.37 for the positive group. The mean total daily oral morphine equivalent for the negative and positive group were 112.35 ± 233.58 mg and 36.82 ± 58.85 mg, respectively. There was no significant difference found in other symptoms in the modified ESAS between these two groups. The positive rate of the CAGE in patients with advanced cancer attending an out-patient radiotherapy clinic was only 7%, and analyses were limited by the small sample size of those with a positive CAGE. Whether our observed low positive rate of CAGE represents the true prevalence of problem drinking or the CAGE questionnaire is an insensitive tool for screening problem drinking in an outpatient palliative radiotherapy clinic requires further investigation. We did not find statistically significant worse pain intensity nor higher analgesic consumption in patients who screened positive for CAGE questionnaire.

Comments:

Strengths/uniqueness: This report is well described and discussed, in outlining the utilization of disciplined assessments in a unique palliative care setting.

Weakness:The authors recognize in the Discussion the likely relevance of active / nonactive drinking in understanding the importance of a positive CAGE response. However this is not reported in their findings, and may explain the poor correlation with findings in other studies.

Relevance to Palliative Care: This report demonstrates the expansion of the use of assessment tools such as the CAGE and ESAS, both routinely used in Edmonton to other locations. This is an encouraging sign of an increased desire to better assess and monitor outcomes in palliative care populations.

The Emotions and Coping Strategies of Caregivers of Family Members with a Terminal Cancer.

Carol Grbich, Deborah Parker, Ian Maddocks. Journal of Palliative Care 17:1/2001;30-36

Prepared by: : Paula Brindley

Received during: Bus Rounds January 22 2002

Abstract:

This study documents the emotional experiences and coping strategies of a group of caregivers as they move from the diagnosis of a close family member with terminal illness through the stages of caring and post bereavement. Supportive evidence, matching that of previous literature, was gathered regarding the impact of such care, but additional findings counter the notion of "burden" by revealing that strong positive emotions were experienced by these caregivers regarding the opportunity given to them to express their love through care. By contrast and post bereavement, however, intense grief was reported. There appeared to be a complete lack of emotional support throughout from health professionals, particularly in the bereavement phase when need is very apparent.

Comments:

Strengths:
1) Longitudinal design.
2) A stage by stage interactive approach over an 18 month period allowing one
set of data to inform the next.
3) The involvement of four different groups
¨ Bereaved caregiver focus group and individual interviews. 12 participants attending a 16-week support group.
¨ 86 bereaved caregivers questionnaires
¨ Four Focus Groups with a total of 40 health service providers from a variety of disciplines
¨ Case Studies of individual caregivers selected to reflect an identified age-based distribution of patients with cancer. (9 wives, 6 husbands, 3 sons, 2 daughters)
¨ Use of open-ended questions in interviews conducted at 3-6 monthly intervals. Patient was present at some interviews.
¨ Additional interviews with 14 caregivers following the bereavement.
4) Identification of positive emotions

Weaknesses: The samples tend to be pre-selected. Not a lot of new information from this study. Suggestions regarding how care providers might use this information to increase support to the caregivers would be helpful.

Relevance to Palliative Care: Provides information/material for a caregiver support group and preparing caregivers for what they may feel after the death occurs.
Good to encourage caregivers to enjoy what time they have and see it positively, as a gift, rather than as a burden. The opportunity to communicates their love to the patient by showing affection through providing care. To also feel pride in what they are doing.
This paper also supports the need for post bereavement services

Palliative Care for Families: Remembering the Hidden Patients. (Downloadable pdf file)

Kristjanson LJ, Aoun S. Can J Psychiatry 2004; 49:359-65

Prepared by: Daniela Miu

Received during: Journal Rounds on the Tertiary Palliative Care Unit, January 25, 2007

Abstract

Families of patients receiving palliative care are profoundly affected by the challenges of the illness. They observe care that the patient received, provide care for the patient, and receive support from health professionals in the form of information, counseling, or practical assistance. As they witness and participate in the patient's care, they judge the quality of care that the patient receives. They often see themselves as the patient's care advocates and may harbour regret and guilt if they believe that the patient did not have the best possible care. The illness experience profoundly affects family members' physical health; recognition of this has coined the term "hidden patients." This article briefly synthesizes empirical work that suggests how to best support families in a palliative care context. We discuss how to define the family, emphasizing a systems approach to family care. We describe the impact of the illness on the family in terms of family members' health, family communication issues, psychological issues, needs for information, physical care demands, and family costs of caring.

Comments

Strengths/uniqueness:
This article summarizes findings from literature about families of terminally ill patients and identifies the most relevant issues in caring for these families.

Weaknesses:
The review was not exhaustive of all the relevant literature. Empirical work related to families in a palliative care context is quite recent and is only beginning to be seen as an important area.

Relevance to Palliative Care:
The impact of a terminal illness on the family has significant effect on the physical, mental and financial well-being of family caregivers.
Family caregivers have unmet needs for communication, information and support.
It is critical to monitor the needs of family caregivers and target those most in need with therapeutic interventions.

Diginity in the Terminally Ill: Revisited. (Downloadable pdf file)

Full Reference: Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S, Harlos M. Diginity in the Terminally Ill: Revisited. J Palliat Med 2006; 9(3): 666-71.

Prepared by: Allyn Hum

Received during: Journal Rounds on the Tertiary Palliative Care Unit, March 1, 2007

Abstract:
Background: Several studies have been conducted examining the notion of dignity and how it is understood and experienced by people as they approach death.
Objective: The purpose of this study was to use a quantitative approach to validate the Dignity Model, originally based on qualitative data.
Design: Themes and subthemes from the Dignity Model were used to devise 22 items; patients were asked the extent to which they believed these specific issues were or could be related to their sense of dignity.
Results: Of 211 patients receiving palliative care, "not being treated with respect or understanding" (87.1%) and "feeling a burden to others" (87.1%) were the issues most identified as having an influence on their sense of dignity. All but 1 of the 22 items were endorsed by more that half of the patients; 16 items were endorsed by more than 70% of the patients. Demographic variables such as gender, age, education, and religion affiliation had a influence on what items patients ascribed to their sense of dignity. "Feeling life no longer had meaning or purpose" was the only variable to enter a logistic regression model predicting overall sense of dignity.
Conclusions: This study provides further evidence supporting the validity of the Dignity Model. Items contained within this model provide a broad and inclusive range of issues and concerns that may influence a dying patient's sense of dignity. Sensitivity to these issues will draw car providers closer to being able to provide comprehensive, dignity conserving care.

Comments
Strengths/uniqueness:
In this study, "feeling a burden to others" and "not feeling treated with respect or understanding" were identified as the most highly endorsed dignity related concerns. Different demographic populations were also studied and found to have varying dignity related concerns. Patients identified as having their dignity breached showed a trend towards endorsing more items as being associated with their dignity than those whose dignity was intact. Logistic regression further showed that "feeling life had no longer meaning or purpose" was the only item with predictive value in relation to a sense of dignity.

Weaknesses:
The patient population in this study had cancer. Individuals with terminal illnesses arising from non-malignant disease may have different dignity related concerns. Data in this study was collected mainly from an older population (mean age: 67years). Younger patients may have different dignity related concerns based on their life experiences. The sample population was also not sufficiently culturally diverse to delineate cultural factors that may affect dignity. The authors also concede that the Dignity model is temporally unstable, that concerns may change as death draws closer.

Relevance to Palliative Care:
Physicians are less adept at recognizing and addressing psychosocial and existential aspects of a dying patient's care. The Dignity Model tries to breach the gap by identifying physical, psychological, social and existential issues which may impact on the patient's perception of self-worth and dignity.

By ascribing meaning to this period of their lives, and helping our patients find a sense of purpose, we can prevent them from feeling that they are burdensome or no longer worthy of respect

Caring for a Loved One with Advanced Cancer_Determinants of Psychological Distress in Family Caregivers (Downloadable pdf file)

Prepared by: Mark Belletrutti

Received during: Journal Rounds of the Tertiary Palliative Care Unit

Dumont et al. Journal of Palliative Medicine 2006; 9(4): 912-921
Abstract: BACKGROUND: Family caregivers caring for a patient with terminal cancer may experience significant psychological distress. OBJECTIVE: The purpose of this study was to determine the extent to which the family caregivers' psychological distress is influenced by the patients' performance status while taking into account individual characteristics of caregivers and their unmet needs. METHODS: Two hundred twelve family caregivers were assigned to three cohorts according to the patient's performance status, as measured by the Eastern Collaborative Oncology Group Functional Scale (ECOGS). Interview information was collected on the services and care provided, as well as on the caregivers' characteristics and level of psychological distress. RESULTS: Family caregivers' psychosocial distress is strongly associated with the patients' terminal disease progress and declined functioning. The level of psychological distress varies from 25.2 to 33.5 (p = 0.0008) between the groups. Moreover, the percentage of caregivers with a high level of psychological distress varies from 41% to 62%, while this percentage is estimated at 19.2% in general population. A high distress index was significantly associated with the caregiver's burden, the patient's young age, the patient's symptoms, the caregiver's young age and gender, a poor perception of his/her health and dissatisfaction with emotional and tangible support. CONCLUSIONS: Family caregivers of patients in the advanced stages of cancer experience a high level of psychological distress, which increases significantly as the patient loses autonomy. Health care policies and programs need to be revisited in order to take the reality of these patients and their families into account.
Clinical Question
Which factors (patient and caregiver) influence the psychological distress of family caregivers of patients with advanced cancer?

Summary
A prospective, cross-sectional study of primary caregivers of patients with advanced cancer was performed to determine the extent to which family caregiver's psychological distress is influenced by the performance status of the patient.

212 main caregivers were recruited and interviewed using standardized interview assessments of distress. They were divided into 3 cohorts based on the performance status of the patients (ECOGPS):
1. patient confined to a bed or chair for <50% of waking hours (grade 2)
2. patient confined to a bed or chair for >50% but <100% of waking hours (grade 3)
3. completely bedridden patient (grade 4)

Family caregivers' psychosocial distress is strongly associated with the patients' terminal disease progress and declined functioning. The level of psychological distress varies from 25.2 to 33.5 (p _ 0.0008) between the groups. Moreover, the percentage of caregivers with a high level of psychological distress varies from 41% to 62%, while this percentage is estimated at 19.2% in general population. A high distress index was significantly associated with the caregiver's burden, the patient's young age, the patient's symptoms, the caregiver's young age and gender, a poor perception of his/her health and dissatisfaction with emotional and tangible support.

Strengths

" Prospective study using standardized interview assessments
" Provides an objective assessment of the difficulty of care in the home setting
" Showed a strong association with the patient's level of functioning
" Highlights that psychological distress is significant, even in young caregivers

Weaknesses

" Possible selection bias (avoidance of solicitation of caregivers for fear of adding to their burden) - underrepresentation of caregivers with high levels of distress
" One time point - although some caregivers participated in multiple interviews, the possible change in level of distress was not specifically examined
" Relatively homogeneous population (Quebec francophone), unable to consider ethnic and cultural influences
" Level of income and financial resources not assessed

Relevance to Palliative Care

As the main caregivers of our patient population outside the hospital setting, these people play a large role in ensuring a strong quality of life at the end of a patient's life. Recognizing the caregiver's level of psychological distress and appropriately supporting them will benefit both the patient's well-being, and the caregiver's well-being before and after the patient dies.