Hidden Patients: The Relatives of Patients in Need of Palliative Care

Abstract

Background:

When identifying patients for palliative care, medical specialists find it necessary to disclose “hidden” patients: the patient's relatives. The issue has been discussed sporadically in Bulgaria; the present study was part of a larger investigation that examined the opinion of medical specialists, patients, and their relatives.

Method:

The study protocol was explained to participants who gave written informed consent. Patients (n=211) were followed up on by their general practitioners (GPs) (n=42) during one year. All relatives were invited, and 173 (82%) agreed and participated. A questionnaire created by the authors was used. The data were analyzed by frequency distribution (descriptive statistics) and nonparametric tests (Pearson's χ²) and statistically processed using SPSS 17.0 (SPSS Inc., Chicago, IL).

Results:

Relatives providing care were predominantly women, two-thirds over 60 years of age. There was a one-to-one ratio between caregivers for oncological and nononcological patients. The duration of care was more than one year in 53% of cases. Most relatives reported their loved ones found physical suffering “very hard to bear” (53%), while approximately 17% could not assess the extent of psychological suffering. The vast majority stated that they had difficulties in providing care, and 68% had financial problems in that respect.

Conclusion:

Including relatives as users and part of the palliative care team has been discussed in the literature. In Bulgaria, participation is solely due to the lack of organized services for palliative care. Relatives participate in activities that are performed by trained staff in countries with developed palliative care; these activities, along with negative emotional experiences and economic difficulties, overburden these caregiving relatives significantly.

Introduction

When identifying patients for palliative care, medical specialists find it necessary to disclose “hidden” patients: the patient's relatives. Several studies from the United States and European countries have indicated that relatives participate directly in providing care to patients, evaluate the quality of medical care, and are deeply involved psychologically.^1–4 The scope and timing of communication about the patient's disease is an important factor for the relatives.

On the basis of a literature review, Sharon and colleagues concluded that, in general, relatives had high levels of informational needs at all stages of the disease process.⁵ A great number of relatives considered that physicians discussed the problem with them late^1,2 in the course of the disease with a limited amount of information.² The relatives considered it their right to obtain information from the medical specialists so that they could better understand the facts and the reality of the situation, prepare themselves psychologically for coming events, organize all these changes into the everyday life of the family, and provide information to other relatives or to the patient.³ A study in Romania pointed out relatives' difficulties to be first economic (e.g., the cost of drugs not covered by health insurance), and then bureaucratic (e.g., prescription of opioid analgesics required much paperwork), typical for countries in Eastern Europe.⁴

In Bulgaria, pursuant to the Law on Health, patients have the right to palliative care in cases of an incurable disease with an unfavorable prognosis. Palliative medical care is provided by general practitioners (GPs), health institutions for out-of-hospital and hospital-based care, oncological health centers, and hospices.⁶ The issue of palliative care has been discussed sporadically by the medical community in Bulgaria. However, the basic package of activities provided by GPs and financed by compulsory health insurance does not include palliative care as a specified medical activity.⁷ Patients directly pay nursing homes, the only clinical path in palliative care for oncological patients in terminal stages. Thus, in general, palliative care is not organized, and the role of GPs and other medical and nonmedical specialists in providing it is not established. With this in mind, the objective of the present study was to investigate the opinion of the relatives taking care of patients in need of palliative care.

Materials and Methods

The present study was part of a large-scale, multilevel investigation of palliative care, included GPs, specialists, patients, and their relatives. The ethical committee of the Medical University Plovdiv (Plovdiv, Bulgaria) approved the research design. The study protocol was explained to all participants, who gave written informed consent.

Overall, 211 patients were followed up with by their GPs (n=42) during a year. Selection criteria for patients were to be over age 18—the age of consent in Bulgaria— and a diagnosis stage of oncological disease with metastasis or third- or fourth-stage chronic heart failure (CHF) according to the New York Heart Association or chronic obstructive pulmonary disease (COPD) with a functional expiratory rate >30% volume/sec and/or more than three hospitalizations because of exacerbation and/or shortness of breath in walking 100 m. These criteria were chosen due to the lack of established instructions in Bulgaria for determining the patient's need for palliative care and were based on the conception of palliative care outside oncological cases. Also taken into consideration were population demographic structure, epidemiological morbidity data, and general practice setting.

In order to present the patients' relatives' point of view about the provided palliative care, a questionnaire was prepared, with mostly closed statements (yes/no and multiple choice answers) and two open questions for describing the received and/or needed support. To validate the questionnaire, a pilot survey of 30 patient care assistants was conducted. One month later, these assistants were asked the same questions in order to test the reliability and stability of the pilot survey. The obtained high value of the coefficient of internal consistency —Cronbach's alpha—and of the Spearman-Brown coefficient (rsb=0.952) and the reasonable mean corrected item–total correlation (R=0.426) confirmed the reliability and validity of the questionnaire. All relatives who took care of the 211 patients were invited, and 173 (82%) agreed and participated.

Statistical analysis

The data were analyzed by frequency distribution (descriptive statistics) and nonparametric tests (Pearson's χ²) and statistically processed using SPSS 17.0 (SPSS Inc., Chicago, IL). Level of significance was accepted at p<0.05.

Results

Demographic data for relatives are presented in Table 1.

Table 1.

Demographic Data for Relatives

Demographic	N (%)
Gender
Male	46 (27%)
Female	127 (73%)
Age
≤40	21 (13%)
41–50	28 (16%)
51–60	45 (26%)
61–70	48 (28%)
≥71	31 (18%)
Level of education
Primary	19 (11%)
Secondary	99 (57%)
Higher	55 (32%)
Social status (self-defined)
Excellent	5 (3%)
Satisfactory	80 (46%)
Good	79 (46%)
Weak	9 (5%)
Relationship with the patient
Husband/wife	88 (51%)
Child	61 (35%)
Sibling	6 (3%)
Another relative	14 (8%)
Friend	2 (1%)
Parent	1 (1%)
Hired person	1 (1%)

Organization of care

There was a one-to-one ratio between relatives providing care for oncological and nononcological patients. The distribution of patients according to their diagnoses is presented on Table 2. The duration of care was more than one year in 53% of cases.

Table 2.

Distribution of Patients According to Their Diagnoses

Diagnosis	N	%	Sp
Oncological disease	87	41.28	3.38
CHF	65	30.80	3.17
COPD	20	9.47	2.01
Oncological disease and CHF	21	9.95	2.06
CHF and COPD	14	6.63	0.71
Oncological disease and COPD	2	0.94
Oncological disease, CHF, and COPD	2	0.94
Total	211	100

CHF, chronic heart failure; COPD, chronic obstructive pulmonary disease; Sp, standard error of percentage.

Care in a home setting was predominant (56%); in the remaining cases, care was provided both at home and in a health institution. The place in which care was provided did not depend on the relative's social profile or patient's functional status (p=0.131); however, in the home setting only, relatives provided care more frequently for patients aged 80 and older (p<0.05). Patients with nononcological diseases received care at home to a greater degree compared to oncological patients, where home care was more frequently combined with institutional care (p<0.01).

With few exceptions, 99% of relatives sought and 96% received information concerning the condition of patients. Most frequently, this information was provided simultaneously by the patient's GP and a specialist in the respective disease. Although no significant relationships were found, the specialist tended to inform the relatives more frequently in cases of oncological diseases, whereas the GP provided information about the patient's condition in cases of chronic cardiac failure (p=0.532).

Evaluation of the patient's condition by the relatives

Relatives who are emotionally connected with the patients often evaluate the condition of the patients by the degree of patient suffering. Most relatives reported that their loved ones found physical suffering “very hard to bear” (53%), whereas only 10% did not find it hard to bear. Although fewer relatives (46%) reported that it was “very hard” psychologically for the patients, these aspects of suffering were mutually dependent (p<0.001; correlation coefficient rxy=0.50): an increase in physical suffering increased psychological suffering. Approximately 17% could not assess the extent of psychological suffering and 10% could not assess the extent of physical suffering, with the difference being nonsignificant (p=0.067). Table 3 presents evaluation of the physical and psychological aspects of the suffering of loved ones.

Table 3.

Relatives' Parallel Evaluation of the Physical and Psychological Aspects of Patients' Suffering

		Psychological aspect
Physical aspect		“Very hard to bear”	“Not very hard to bear”	“Not hard to bear”	“I cannot give an assessment”	Total
“Very hard to bear”	N	63	18	1	10	92
	%±Sp	68.47±3.57	19.56±3.01	1.08	10.86±2.36	100%
“Not very hard to bear”	N	14	33	5	7	59
	%±Sp	23.72±3.23	55.93±3.77	8.47	11.86±2.45	100%
“Not hard to bear”	N	0	0	5	0	5
	%±Sp	0	0	100	0	100%
“I cannot give an assessment”	N	3	1	1	12	17
	%±Sp	17.64	5.88	5.88	70.58±3.46	100%
Total	N	80	52	12	29	173
	%±Sp	46.24±3.79	30.05±3.48	6.93±1.93	16.76±2.83	100%

Sp, standard error of percentage.

According to the relatives, the patients with oncological diseases more frequently found physical suffering “very hard to bear” (62%) compared to those with nononcological diseases (43%; p<0.05; student criterion-u=2.49); a greater number of relatives of patients with nononcological diseases could not assess the extent of physical suffering (15%) compared to the relatives of patients with oncological diseases (5%); (P<0.05; u=2.15).

The evaluation of the physical and psychological aspects of suffering made by the relatives was unrelated to the patient's gender and age, their functional status, the place where care was provided, or the length of the disease (p=0.52). The factors characterizing the group of relatives who completed the questionnaire—gender (p=0.095), age (p=0.155), education (p=0.245), social status (p=0.705), and family relationship (p=0.651)—were unrelated to the evaluation. The relatives talked to the terminally ill about their diseases and conditions, and in 16% of cases they discussed prognoses; in 12% of the cases they also talked about death. Gender (p=0.240), age (p=0.705), education (p=0.348), social status of the relatives or patients (p=0.092), and the diagnosis (p=0.675) itself were all unrelated to conversations about life situations requiring palliative care.

Care needs

Provisions of care for a severely ill person have consequences for the health of the provider: fatigue, sleep disturbances, depression, anxiety, and increased risk of disease. The majority of relatives (78%) answered positively to the question that asked whether they had discussed their own needs with the medical specialists. Most frequently, they had reported such information to the GP of the patient (84%), the specialist (47%), and/or their own GP (16%). Only 3% received specialized psychological care, 1.50% reported they had talked to hospice staff, and 0.74% had talked to a social worker. No dependence was found between seeking support on the part of the relatives and their sociodemographic status (p=0.173). Their needs did not show any relationship to age (p=0.207), diagnosis (p=0.082), or duration of care (p=0.315).

Difficulties in providing palliative care

The vast majority (96%) of the relatives stated that they had difficulties in providing care, and 68% had considerable financial problems in that respect. According to 58% of the relatives questioned, the patient would feel best at home with his or her family. Neither the patient's age (p=0.076) nor the diagnosis was related to the advantage of palliative care rendered in the home setting (p=0.152). This advantage was stated predominantly by the relatives who determined their social status as good or excellent (p<0.001), with a moderate correlation (p<0.001; rxy=0.30). A considerable percentage (42%) shared the opinion that adequate palliative care cannot be provided in the home setting. Both the patient's age (p=0.552) and diagnosis were unrelated to this statement (p=0.705).

The dependence between low social status and difficulty in providing palliative care in the home setting was expected (p<0.001), and a moderate direct correlation was found (rxy=0.32; p<0.01). According to 27% of the people studied, medical specialists did not make a sufficient number of home visits. Social status (p=0.552), age (p=0.092), diagnosis (p=0.365), and functional state of the patient (p=0.491) had no relationship to the opinion stated. According to 40% of the relatives, patient care assistants were difficult to find. Age (p=0.561) and social and functional state (p=0.468) of the patient were unrelated to the provision of patient care assistants, as stated by the relatives.

Few relatives considered institutions the most suitable place for palliative care, citing hospital palliative care (17%) or hospice care (14%) most often. The hospital was preferred to a greater degree by the relatives of patients under the age of 50 years (p<0.01), but no relationship was found with respect to diagnosis (p=0.068), evaluation by the Karnofsky Performance Status scale (P=0.528), or the social status of the family (p=0.073). Choosing hospice care was unrelated to the demographic and social factors of the patients and relatives (p=0.083) or to the diagnosis (p=0. 071) or functional state of the patients (p=0.105).

Discussion

During the course of a patient's disease, family members have many roles: they assist physically and psychologically; take part in the decision making process; coordinate care; and are under physical, psychological, and financial distress themselves. Two-thirds of the caregivers studied were women from the patient's family, most frequently a wife older than 70 years of age. Older relatives require more frequent provision of care for a severely ill patient. In his dissertation, Nelson sums up the conclusions from many investigations that eldercare providers accept their roles more easily but are more susceptible to stressors of a socioeconomic nature.⁸

The results from the present study confirm the predominance of provision of care within the family, which is typical in Bulgaria, with minimal to negligible participation of more distant relatives or people outside the family. This is largely a cultural peculiarity. The financial conditions of the families as well as the limited number and types of social services rendered in the country also contribute to this encapsulation of the provision of care for severely ill people.

It was found in this study that more than half of patients receive care only in a home setting, especially those with nononcological diseases. The fact that the Bulgarian health care system lacks organized and coordinated palliative care is doubtless an important factor. The caregivers point out that more than half of the patients were treated only outside the hospital, especially elderly patients above 80 years of age, and were not admitted to the hospital. In some of these cases, despite their underlying diseases, these patients were in greater need of social services than clinical treatment, and the hospital was not the most appropriate place for their care. The lack of provision of care by professionals, however, overwhelmed the family physically, emotionally, and financially. There is a general opinion in the community that palliative care is difficult to obtain, a statement that was supported by all relatives questioned. The present study did not find a relationship between the patient's admittance to a health institution and a specific social demographic or diagnostic factor.

Traditionally, neoplasms as disease entities are associated with palliative care. The modern concept widens this range by including patients with organ failure. An investigation carried out by palliative care centers in the United Kingdom showed that 85% of all centers provided care for patients with chronic heart failure.⁹ In the Seamark and colleagues¹¹ study, 33% of patients with advanced-stage chronic heart failure received palliative care. The main obstacle in these cases was the difficulty in predicting the progression of the disease in stages 3 and 4 according to the New York Heart Association.¹⁰ COPD is one of the diseases in which the palliative care approach improves patients' quality of life.¹¹ A retrospective study of COPD patients showed that if the palliative care approach was not applied, the patients received inadequate health care.¹² Patients with COPD in its late stages have the same symptoms as patients with lung cancer. The late stages of COPD have been evaluated for palliative care by specialized professional communities, such as the American Thoracic Society, the European Respiratory Society, and the Canadian Thoracic Society.¹³ In fact, most cases in need of palliative care for a prolonged period involved patients with chronic nononcological diseases, for which the palliative care approach is not generally applied in Bulgaria. This led to physical, psychological, and financial burden for families and reduced the access of patients to appropriate medical care.

The information concerning patient conditions was provided mainly by the GP, and, to a certain degree, by the disease specialist. Palliative care is one of the areas in which the concept that the physician in general practice should be a family doctor and provide care for the whole family has a definite positive effect in improving the patient's quality of life. This is impressively supported by the fact that two-thirds of relatives discuss with these doctors their own needs associated with the care they provide for a severely ill person. Although primary care provided by GPs was recently started in Bulgaria, physicians have already succeeded in the establishment of a relationship with patients and their relatives. According to Kendall and colleagues,¹⁴ patients and their relatives believe in the importance of the GP's role in treating oncological patients. He or she is the one who provides care and coordination between the different medical specialists in the team. The results about discussion of diagnosis and prognosis by the relatives once again suggest that this topic is difficult to accept in society, even in the family. Organizing and providing high-quality palliative care were invariably associated with changes in attitudes toward the dying process and death.

The results of the study confirm the interrelationship between the physical and psychological aspects of suffering. In most cases the relatives pointed out the physical aspects. For oncological patients, the family members more frequently reported that the patient found it “very hard” to bear his or her condition. The relatives found it more difficult to assess the degree of suffering in nononcological diseases, especially the psychological aspects. There are discrepancies in the criteria by which medical care is organized when palliative care is required, as it is based on the diagnosis and criteria by which the relatives assess the situation, which most frequently is related to the occurrence of symptoms, largely pain and depression.

Relatives confirmed that the home is the preferred place for palliative care, but 40% of them stated that high-quality care could not presently be provided in a home setting. Palliative care has considerable socioeconomic consequences. Home care is especially difficult in socially weak families, for the elderly, and for those with more severe diseases, as assessed by the Karnofsky scale and confirmed by other investigations, as well.¹⁵

In a study by Ivanova and colleagues,¹⁶ all relatives stated the importance of palliative care, and most patients were cared for in a home setting (64%). The difficulties that were most frequently encountered included financial (82%), lack of information (43%), and impersonal attitudes on the part of institutions and individuals in 20%. Another aspect reported was the lack of normative justification—the high prices of services based on unclear rules of financing and organization. Preferences for the place where care should be provided were associated largely with cultural differences; in the United States and Western European countries there is a tendency to deinstitutionalize care. In Taiwan patients prefer to be admitted to a hospital for terminal care, so that they would not be a burden to their families.¹⁷ In Bulgaria the hospice is the least preferred among the institutions, because patients must pay directly for the care and services obtained in nursing homes. However, there is another important aspect discussed by McKechine and collagues:¹⁸ adjustment. The community accepts nursing homes as places where patients go to die.

More than half of the relatives provided care for a severely ill family member only in a home setting for a prolonged period of time. Deterioration of the psychological state of the patient (depression, somatization, anger, feeling of losing control) was among the problem conditions occurring with greater frequency when care was provided for more than one year. This conclusion was made after analyzing a multitude of investigations in the Handbook of Bereavement Research that evaluated individuals' risks of a complicated period of grief after the loss of relatives for whom the individuals had provided palliative care.¹⁹

Only four relatives included in the study received specialized psychological aid. Although relatives are regarded theoretically as beneficiaries in palliative care, interventions concerning their conditions are not systematically performed. A conceptual model has been proposed for the role “relative/caregiver of a severely ill patient,” in which readiness to accept the social role is discussed. A literature review on this topic included the following aspects for relatives: training, telephone support, discussion of strategies to cope with stress, and family meetings/conferences as instruments used in communication.^20–22

Conclusion

Including relatives as users and part of the palliative care team has been discussed in the literature. In Bulgaria, the participation of relatives is solely due to the lack of organized services/offices for palliative care. Relatives participate in activities that are performed by trained staff in countries with developed palliative care programs; these activities, along with negative emotional experiences and economic difficulties, overburden these caregiving relatives significantly.

Footnotes

Author Disclosure Statement

No conflicting financial interests exist.

Acknowledgments

Translation occurred under project BG051PO001-3.3-05/0001 of the Ministry of Education and Science.

References

Cherlin

, Fried

, Rpigerson

, Shulman-Green

, Jonson-Hurzeler

, Bradley

: Communication between physicians and family caregivers about care at end of life: When do discussions occur and what is said?. J Palliat Med, 2005; 6:1176–1185.

Lecouturier

, Jacoby

, Bradshaw

, Lovel

, Eccles

: Lay carers' satisfaction with community palliative care: Results of a postal survey. Palliat Med, 1999; 13:275–283.

Friedrichsen

: Justification for information and knowledge: Perception of family members in palliative home care in Sweden. Palliat Support Care, 2003; 1:239–245.

Dimitrescu

, Van Den Heuvel

: Evaluation of palliative care at home: The families' perspective. J Palliat Care, 2007; 1:54–58.

Parker

, Clayton

, Hancock

, Walder

, Butow

, Carrick

, et al.: A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of Information. J Pain Symptom Manage, 2007; 1:81–93.

Health Law. General Assembly of the Republic of Bulgarian Sofia, Official Gazette 70/02.08. 2004 (in Bulgarian).

Order 40/2004 for Defining the Main Package of Health Services Paid by the National Health Insurance Fund. Ministry of Health, Sofia, Official Gazette 112/23.12.2004Γ (in Bulgarian).

Kendall

, Boyd

, Campbell

, Cormie

, Fife

, Thomas

, et al.: How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and carers. Fam Pract, 2006; 23:644–650.

Nelson

: End-of-Life Caregiving. PhD dissertation, 2007, available at http://scholarshiparchive.library.oregonstate.edu/xmlui/bitstream/handle/1957/7450/Nelson_dissertation, 2013.

10.

Gibbs

LME

, Khatri

, Gibbs

JSR

: Survey of specialist palliative care and heart failure: September 2004. Palliat Med, 2006; 20:603–609.

11.

Seamark

, Ryan

, Smallwood

, Gilbert

: Deaths from heart failure in general practice: Implications for palliative care. Palliat Med, 2002; 16:495–498.

12.

Elkington

, Whitea

, Addington-Hall

, Higgsa

, Pettinaric

: The last year of life of COPD: A qualitative study of symptoms and services. Resp Med, 2004; 98:439–445.

13.

Elkington

, White

, Higgs

, Edmonds

: The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliat Med, 2005; 19:485–491.

14.

Simpson

, Rocker

: Advanced chronic obstructive pulmonary disease: Impact on informal caregivers. J Palliat Care, 2008; 1:49–54.

15.

Emanuel

, Fairclough

, Slutsman

, Emanuel

: Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Ann Internal Med, 2000; 132:451–459.

16.

Ivanova

, Danova

, Kazandjieva

: Problems in palliative care providing Health Manag, 2005; 1:30–32 (in Bulgarian).

17.

, Chiu

, Cheng

, Bin

, Chuang Chen

: Why Taiwanese hospice patients want to stay in hospital: Health-care professionals beliefs and solutions. Support Care Cancer, 2004; 12:285–292.

18.

McKechine

, MacLeod

, Keeling

: Facing uncertainty: The lived experience of palliative care Palliat Support Care, 2007; 5:255–264.

19.

Aranda

, Milne

: Guidelines for the Assessment of Complicated Bereavement Risk in Family Members of People Receiving Palliative Care. Melbourne, Australia: Centre for Palliative Care, 2000.

20.

Hudson

: A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care. Palliat Support Care, 2003; 1:353–365.

21.

Hudson

, Quinn

, O'Hanlon

, Aranda

: Family meetings in palliative care: Multidisciplinary clinical practice guidelines. BMC Palliat Care, 2008; 7:12.

22.

Hudson

, Hayman-White

: Measuring the psychosocial characteristics of family caregivers of palliative care patients: Psychometric properties of nine self-report instruments. J Pain Symptom Manage, 2006; 3:215–228.