Hospital Staff Opinions Concerning Loved Ones' Understanding of the Patient's Life-Limiting Disease and the Loved Ones' Need for Support

Abstract

The aim of this study was to investigate the opinions of nurses, assistant nurses, and doctors about whether the patient's loved ones understand that the patient has a life-limiting disease, and if they talk about these matters with the patient or staff. The study was quantitative in design with data collected by means of a semi-structured questionnaire. The study was conducted at geriatric, oncology, and urology wards at a university hospital in western Sweden. Results indicate a perception that loved ones understand the seriousness and consequences of the disease. Professional caregivers perceived an association between the loved ones' understanding of the fatal disease and their ability to cope with the situation. In addition, the study found that follow-up activities after the patient's death are mostly lacking.

Introduction

Being a loved one of a patient with an incurable disease means that your life is changed and that new situations will influence every-day existence as you follow the patient toward the end of life.^1,2 But how much do the loved ones actually know about the consequences of the patient's disease at the time of the illness? During the illness both the patient and their loved ones reflect on physical, social, psychological, and existential aspects that may find expression both as specific questions about pain management and as existential discussions about the value of life.^3–5 Meeting these kinds of questions and thoughts on a daily basis can be problematic for the professional carers if they attempt to find a hidden meaning behind them. Main⁶ has shown in her study that health care staff sometimes feel ill-equipped to deal with issues concerning death and dying, and Kuuppelomäki⁷ revealed that the professionals were more afraid of death than the patient and family members. Other studies have identified and investigated feelings of stress among professional carers arising from the difficulties of talking about various subjects with patients and loved ones, highlighting the need for training in giving information.^8–10 In studies describing the use of coping strategies among loved ones to enable them to manage difficult phases, such strategies are defined as how a person thinks and acts in order to deal with stressful situations.^11,12 This does not constitute denial; the strategies are grounded in hope and according to Rustoen¹³ are important for the loved ones to be able to cope with a life-limiting situation. Studies have also shown that the loved ones want to know about the prognosis and possible hope,^14,15 and they want to be informed about the management of pain and fatigue, and available palliative care resources.¹⁶ Caring for dying patients and meeting their loved ones are common, both in ordinary hospital wards and in home care as well as in palliative care units. A prerequisite for a good caring relationship is that the professional carer is able to be empathic in encounters with the loved ones with regard to their understanding of the disease and its consequences and how they will handle the situation.¹⁷ The rational for conducting this study is to increase knowledge of how professional carers comprehend the loved ones' understanding of the patient's life-limiting disease and their need for support.

Aim

The aim of this study was to investigate the opinions of nurses, assistant nurses, and doctors about whether the loved ones understand that the patient has a life-limiting disease, and if they talk about these matters with the patient or with the staff. We also wanted to learn about the professional carers' estimation of the possibility of providing the loved ones with practical and emotional support, both during hospitalization and after the patient's death.

Methods

The study is quantitative in design with data collected by means of a semi-structured questionnaire containing eight questions with the possibility to add comments.¹⁸ A questionnaire was used as it offers the possibility of reaching a large number of carers, with varying professional backgrounds, who had interacted with dying patients in the hospital. As a literature search failed to find any existing questionnaire within this area, the research group developed one aimed at examining the opinions of professional carers in a hospital, regarding the loved ones' understanding of various aspects of the patient's disease and their need for support.¹⁹ (Questionnaire may be found at www.liebertonline.com/jpm) The questionnaire was piloted among various professions including nurses, doctors, and social workers in the hospital, which resulted in some modifications being made before it was handed out to the participants. Each respondent was asked to select only one of the alternative statements for each item in the questionnaire so that a picture could be gained of the most common opinion among the staff.

The Regional Ethics Board in Gothenburg approved the study.

Sample

The participants were nurses, assistant nurses, and doctors working in the various clinics. A power analysis estimated that 200 questionnaires would be required to ensure statistical power; 343 persons were asked to participate and 226 completed the questionnaire.

Data collection

The study was conducted at geriatric, oncology, and urology wards at a university hospital in western Sweden. The urology and oncology wards treated cancer patients in curative as well as palliative phases of the disease. Many of the patients in the geriatric wards were receiving palliative treatment for various diseases, including cancer.

Data were collected over a 3-week period between January and February 2010. The questionnaires were distributed by the head nurse on each ward, who also had the responsibility of giving a general reminder to the staff. The 226 respondents (66%) returned their questionnaires by putting them in a closed box to ensure anonymity. Because the questionnaires were anonymous the nonresponders could not be identified and their reasons for not participating could not be investigated.

Data analysis

The questionnaires were analyzed using descriptive statistics comparing similarities and differences between clinics, professional groups, gender, age, and time spent working in the profession. Pearson's χ² test and Fischer's test were used to study associations between the differences that appeared. The low numbers of men and doctors made subgroup analysis in those groups impossible.

Results

Respondents' characteristics

Altogether 226 professional carers responded; 28% worked on oncology wards, 47% on geriatric wards, and 25% on urology wards. Most of the participants (80%) worked days, and they had more chances of meeting the loved ones than those who only worked at night. The majority of the carers were between 30 and 59 years of age; approximately 40% of them had worked between 1 and 10 years and another 40% had worked between 11 and 30 years. The majority of the participants were women; men were represented in all professional categories but only in low numbers. For more details of the participants see Tables 1 through 3. The variables showed only small differences, which are highlighted in the text.

Table 1.

Professional Carers Categories and Gender of the Participants

Participants	Assistant nurse	Registered nurse	Doctor
	n=92 (40 %)	n=113 (50%)	N=21 (10%)
Gender				Male	Female
				n=20 (10%)	n=206 (90%)

Table 2.

Age of the Participants

Age	20–29 years	30–39 years	40–49 years	50–65 years
	n=31 (15 %)	n=52 (26%)	n=59 (29%)	n=61 (30%)

Table 3.

Number of Years of Employment in Professional Career

Years	1–10	11–20	21–30	31–50
	n=87 (41%)	n=43 (20%)	n=49 (23%)	n=33 (16%)

Results of the questionnaires

The answer alternatives are printed in italics and the frequencies are described in Table 4.

Table 4.

Results from the Questionnaire

Do the loved ones understand that the patient has a fatal disease?	Always	Often	Rarely	Never
	n=7 (3%)	n=201 (90%)	n=16 (7%)	n=0 (0%)
Loved ones talk about the patients approaching death.	With each other	With professionals	Not at all	Do not know
	n=8 (4%)	n=126 (61%)	n=20 (10%)	n=(25%)
The loved ones understand that the patient is going to die.	Always understand	Understand sometimes	Do not understand at all	Do not know
	n=51 (23%)	n=163 (74.5%)	n=1 (0.5%)	n=4 (2%)
The loved ones can cope with knowing that the patient is going to die.	Always	Often	Seldom	Never
	n=0 (0%)	n=200 (92%)	n=17 (8%)	n=0 (0%)
The loved ones' need for support while at the hospital.	Conversations	Practical help	Information	Other support
	n=219 (97%)	n=124 (55%)	n=200 (88%)	n=40 (17%)
Can the clinic give the loved ones support?	Always	Often	Seldom	Never
	n=19 (9%)	n=180 (82%)	n=21 (9%)	n=0 (0%)
The loved ones' need for support after death.	Conversations	Practical help	Information	Other support
	n=206 (91%)	n=121 (54%)	n=184 (81%)	n=22 (10%)
Has the clinic some follow-up for the loved ones?	Yes	No	Do not know
	n=33 (16%)	n=109 (53%)	n=63 (31%)

Do loved ones understand that the patient has a fatal disease?

Most professionals estimated that the loved ones often understood that the patient had an incurable disease. Only a few thought that this always or rarely occurred and none that it never occurred.

Loved ones talk about the patient's approaching death

The majority of the professionals reported the loved ones commonly talked to the carers about the patient's approaching death. There were differences among the professional categories; a majority of the nurses (74%) answered that the loved ones talked to them about the approaching death compared with 51% of the assistant nurses and 35% of the doctors (p<0.001). There were also differences between the various clinics. Only 40% of the staff in the urology clinic answered that the loved ones talked to the staff about the approaching death, compared with 70% in the other clinics (p<0.01).

The correlation between awareness of the disease and talking to the professionals about it was investigated. It showed that regardless of whether the carers were of the opinion that the loved ones were always, often, or seldom aware of the patient's disease, a majority of them (60 %) answered that the loved ones talked to them about the patient's approaching death. The professional carers believed that the extent of the loved ones' awareness of the patient's disease was founded in the various conversations the carers had had with the loved ones during the patient's hospital stay.

The loved ones understand that the patient is going to die

The majority of the staff (74%) reported that the loved ones sometimes understood that the patient was going to die, in contrast to the remaining respondents (23%) who estimated that the loved ones knew the outcome very well.

The correlation between the awareness of the disease and the understanding that the patient was going to die was investigated. It showed that the professional carers who estimated that the loved ones were always well aware of the patient's disease also estimated to a higher degree that the loved ones always (57%) or sometimes (43%) understood that the patient was going to die. The professional carers who estimated that the loved ones were seldom aware of the patient's disease also estimated that the loved ones only now and then (94 %) understood that the patient was going to die.

The loved ones can handle the patient's approaching death

Most of the participants were of the opinion that the loved ones could often handle the patient's approaching death. An analysis of the correlation between awareness of the disease and the manageability of the situation showed that the professional carers who estimated that the loved ones were always well aware of the patient's disease also estimated that the loved ones could handle the fact that the patient was going to die (100%).

The carers who estimated that the loved ones were often aware of the patient's disease were also of the opinion that the loved ones could handle the situation (93%). This is in contrast with the opinion of those carers (71%) who estimated that even though the loved ones seldom understood the patient's disease they could handle the patient's approaching death.

Support for the loved ones

Nearly all the professional carers indicated that what the loved ones needed most was to talk and to have different kinds of information both during the patient's stay at the hospital and after the patient had died. About half the participants (55%) estimated that the loved ones needed practical support with various practical questions concerning caring after the hospital stay. A minority of the participants (18%) described a need for other forms of support such as contact with a social worker, chaplain, doctor, nurse, or therapist or help with financial issues.

Most of the professional carers (90%) answered that they could give the support the loved ones needed during the time the patient was being treated in the hospital.

About 50% of the staff answered that their clinic did not have any form of follow-up support and one-third did not know if there was any kind of support available for the loved ones after the patient had died. One-fifth answered that they could give follow-up support to the loved ones, but results differed among the clinics. At the urology clinic only 4% of the professionals knew that they had some support to offer after death compared with16% at the oncology and 23% at the geriatric clinics, respectively (p<0.05). There were also differences among the professional categories regarding this matter; 30% of doctors, 14% of nurses, and 16% of assistant nurses (p<0.05) were aware of the availability of support from the clinic.

Discussion

The results indicate that doctors, nurses, and assistant nurses who participated in this study, regardless of their professional category, age, gender, or type of clinic, perceived that the loved ones understood the seriousness and consequences of the patient's disease. Important factors seems to be how information is imparted, what words are used, and how the loved ones interpret the information. The quality of information delivery may depend on communication skills and training. Biola and colleagues²⁰ have studied how face-to-face meetings with the family members promote communication and the understanding of information when health status and prognosis in connection with a patient's approaching death are explained. Friedrichsen and Strang²¹ have described how doctors use different strategies to facilitate the communication of difficult news.

According to Cherlain and coworkers²² the loved ones are ambivalent about hearing and understanding what they are told, but Clayton et al.¹⁷ found that both the loved ones and the patient preferred straight information, given with empathy. Parker and colleagues²³ have shown that other variables influence the information such as discussion with compassion and empathy, honesty balanced by sensitivity and hope, and detailed information. This is in line with Andershed,²⁴ who has pointed out that the attitudes of the professionals, as well as good communication and listening skills, influence the loved ones' understanding and the outcome of that understanding.

In this study it appears that many loved ones talked to professional carers about the patient's approaching death. During these conversations the professional carers may get to know what the loved ones think about their situation. At the same time, the loved ones have the chance to ask for information about the patient's health and prognosis. This type of conversation seems to be one of the ways in which the professional carers can estimate whether the loved ones are really aware of the patient's approaching death. It is, therefore, important that the professional carers are given the opportunity to have these conversations. This study shows that the nurses thought that these conversations were common, which can be explained by the fact that the nurses often talked with the loved ones about the patient's condition on a daily basis. On the other hand, we do not know what aspects these conversations covered. This is interesting as Sivesind and colleagues²⁵ have shown that nurses find it easier to talk about physical complaints than about death and dying, and Hebert et al.²⁶ have shown that such conversations cover questions of different kinds, including those of a physical, social, or existential nature, but that there are barriers that can inhibit the possibility of asking and discussing the important questions. Al-Qurainy et al.,²⁷ in line with findings of Dougherty and coworkers,⁹ point out that training in communication skills can reduce the stress that these conversations may cause the professional carers, and that such skills may also help professionals to counteract the feeling of being ill-equipped to deal with these issues.⁶ The multiprofessional team approach in palliative care may help loved ones and professional carers discuss these special questions and thoughts. This study shows that the professional carers perceived an association between the loved ones' understanding of the fatal disease and their ability to cope with the situation. This indicates the importance of informing the loved ones, both to prepare them of the coming change in their lives, and to help them cope with daily life during the disease.

Professionals judged that the most important support they could offer before the patient's death was the provision of information. In contrast, this was not so important after the death, mostly due to lack of follow-up activity. The difference among the wards could partly be explained by how often they treat palliative patients. Follow-up for loved ones after the patient's death is part of palliative care and, therefore, probably more common in the special palliative units. As Milberg et al. describe, it is important when there is a bereavement follow-up for the loved ones to meet with someone in the team who had cared for the patient in the last hours of life to discuss what had happened, pose any unanswered questions, share their feelings about what they could or could not have done, to get some consolation in their new situations the death had caused and in their bereavement.²⁸

Benkel and colleagues,²⁹ in line with Stroebe and coworkers,³⁰ found that any social support normally needed after death can usually be provided by family, relatives, and friends, but when grief is complicated, special support and treatment from professionals may be needed. Support of bereaved loved ones is one of the cornerstones of palliative care. Even though the clinics in this study are not specialist palliative clinics, they often treat palliative patients and follow-up support for loved ones ought therefore to be part of the caring.

Conclusion

This study points out the importance of enabling conversations between the loved ones and professional carers so that the loved ones' needs for emotional and practical support during the patient's disease can be assessed. In addition, the study indicates that, despite the opinion of the staff regarding their importance, follow-up activities after the patient's death are mostly lacking. This needs to be developed at all wards that treat palliative patients.

Footnotes

Acknowledgments

This study was supported by grants from Hjalmar Svenson's Fund.

Author Disclosure Statement

No competing financial interests exist.

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