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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”


Who cares for family and friends?: providing palliative care at home

Sharon Wiley

RN, MN, Assoc Dip Community Health, Clinical Nurse Consultant, Community 1 Day Centre Palliative Care, Sacred Heart Hospice


This study describes the care provided by family and friends for palliative care patients at home including the provision of practical assistance in a range of activities and domestic chores. It also examines the changes that occur in the care provided by family and friends with the introduction of a consultative palliative care service. Finally, it examines the effect of a palliative care service on carers both in terms of their role relationships and the impact on their health and well-being.

The results of this study will be presented as well as the implications for clinical practice and future research.


"Care in the community is good and care at home is even better". While this may be true for patients, it is not necessarily true for the families and friends who provide most of the care when death is imminent. Recently, the carers' perspective has tended to be overlooked and they have often been referred to as the "hidden patients". This project sought to reinstate carers as clients of palliative care.

Literature Review

While much of palliative care literature favours providing care in the home (Brown et al., 1990; Dunlop et al., 1989; Spiller & Alexander, 1993), there has been no clear evidence about where patients choose to die (Hinton, 1994; O'Henley et al., 1997). One exception was a study done by Hinton that looked at a group of patients and carers who initially all favoured remaining at home but, over time, as the illness progressed, they requested inpatient admission (Hinton, 1994). Lubin (1992) acknowledges that it is difficult to assume categorically that home is always better than inpatient palliative care, or vice-versa. However, because home care may reduce health care costs and minimise demand on acute care beds (NSW Health Palliative Care Working Party, 1993), there is an increasing emphasis towards providing palliative care at home.

The provision of care at home depends on the carer assuming increased responsibilities and being willing and able to provide care (Lubin, 1992). It also depends on the availability of adequate support for the carer (Lubin, 1992). Trends within palliative care have suggested that, in order to continue to achieve the goals of care for the patient and carer, the provision of both inpatient and community care will be necessary in the future.

While this view has been widely accepted by health professionals, and community programs are incorporated as essential components of any palliative care service, the impact on the primary caregiver has not been examined thoroughly. The unpredictability of the disease process and the uncertainty about the future, not only effect those with a terminal illness but also their loved ones and in particular their primary caregiver, who is usually a partner, family member or friend. The care provided by loved ones is referred to as informal care.

This informal care at home covers the provision of practical assistance in a range of activities and domestic chores. It also often requires skilled nursing care (which in an inpatient setting is usually the responsibility of qualified professionals) and additional psychological support both of which can be continuous over a 24-hour period (Atkinson, 1992; Folkman et al., 1994).

The demand for palliative care services within the home has increased due to a number of factors. These include: reduced availability of hospital beds; a desire for less institutionalised care; and an ageing population where the morbidity and mortality associated with illnesses such as cardiovascular disease, cancer and respiratory disease increase with age ( NSW Health Palliative Care Working Party, 1993).

Providing care to a patient with an advanced incurable illness may require the carer to adapt to altered family circumstances, for instance, moving location, reducing or ceasing paid employment, or modifying the home. These changes have the potential to impact on the health and well-being of the carers.


Informal Care

The importance of the informal carer has had some recognition at governmental level. In 1988, the Commonwealth Government identified palliative care as an area where changes in patient management could help to reduce health care costs. A key objective of the Commonwealth Government was for palliative care services to provide community-based care and, consequently, to reduce hospital costs (NSW Health Palliative Care Working Party, 1993). With continued emphasis on, and demand for, care of the terminally ill in their own homes, and despite the provision of professional community-based palliative care services, it is still the family and friends who shoulder the main responsibility for providing care within the home (Lubin, 1992). While it may be of great benefit to the wellbeing of the terminally ill to remain in their own homes, the provision of appropriate support for their carers needs to be considered carefully.

The Carers Association estimates that two million people in Australia look after a friend or a relative who is either elderly, chronically ill or has a disability. Providing care to this group remains primarily a family responsibility (Schofield et al., 1996). Information in Australia about basic issues, such as: the range of services available to carers; patterns of service use and evaluation of existing services, is very limited (Schofield et al., 1996).

General research on informal care has had a tendency to focus on the stress of caregiving and although there is a consensus that caregiving can be stressful, caregivers continue to care and feel satisfied knowing that they are doing a good job and providing comfort to their loved ones (Folkman et al., 1994).

Palliative Care and Palliative Care Services

Palliative care is a style or philosophy of care which assists the person with an advanced incurable illness to maintain as much independence and control as the progress of the illness will allow. The palliative care health professional aims to get to know patients as individuals, treating the family as the unit of care and allowing and supporting each individual and family to make informed choices, not only about the type of care they require, but also about the site of that care and, eventually, of the person's death (NSW Health Palliative Care Working Party, 1993). Professional palliative care services are in place in a variety of settings to support patients who require such care, and their caregivers.

Care at home is often the responsibility of family and friends, who are encouraged to be more involved in making decisions about the care provided than is usual in more conventional hospital inpatient settings. Specialist palliative care health professionals often work in partnership with family and friends, assisting them to provide holistic care for the patient and providing psychosocial support to the family.

Purpose of the Study

This study describes the care provided by family and friends at home before and after the involvement of a community palliative care service. The study also investigates the effect that providing care for terminally ill patients has on the health and lifestyle of family and friends, and the impact of a formal nursing palliative care service on these effects.

Research Design

Data were collected using three methods. Firstly, twenty five principal informal carers were interviewed about carer issues at the time of introduction to a community palliative care service and then a follow-up survey was completed after one month with 13 of these carers who remained as study participants. The primary carers were interviewed using an established questionnaire developed by the Centre for Health Economics Research and Evaluation (CHERE). It has two measurements of care: the carer input, and the impact of care on the carer. The components of carer input include caring tasks, and financial costs. The impact of care includes the carers' mental/physical health and lifestyle choices. Secondly, patient functional health status was recorded on both these occasions using the Karnofsky Performance Scale. Thirdly, palliative care nursing input was recorded over one month through a retrospective audit of the patient database. The data were analysed using descriptive and non-parametric statistics.



The results show that at the time of referral to a palliative care service, 64% of the carers were women, mainly spouses, living with the patient. An increased patient dependency was associated with increased effort on behalf of the carer. Most of the carers in this study had been providing care for six months or less.

While the majority of carers in the sample were spending a substantial amount of time each day providing assistance, this study revealed that the ways in which family and friends were assisting patients varied. Providing care had a significant impact on carers' lives before and after the introduction of a palliative care service.

A substantial number of carers were not providing extra assistance with personal or household tasks. Those who were providing assistance helped with personal care more frequently than household tasks. Bathing and dressing were the most frequent personal tasks requiring assistance, whereas cooking and washing clothes were the most frequent household tasks requiring assistance. The amount of effort expended by carers looking after patients able to attend to most of their own personal needs varied from low to high. This may be explained partially by the additional practical assistance needed for administration of medications as well as the provision of emotional support. Patients who were unable to care for themselves generally required more care, and required medium to high carer effort.

This study found that providing care had an effect on caregivers' lifestyles in relation to: the lack of control they felt over everyday life; lack of self-confidence; changes in paid employment; reduction in leisure time; and in the frequency of vacations. However, the role of caregiving was found to increase self-confidence for some, and was felt to be very pleasant for 40% of participants and unpleasant by only one person in this study. Most caregivers in this study reported a deterioration in their own health in the month prior to referral to the palliative care service. Carers reported as examples of this as an exacerbation of a previous health problem, postponement of their own health care and feelings of distress. The current study also collected information on carers' self-perceived health one month after the involvement of the palliative care team. Only 15% reported a deterioration over the month following referral to the palliative care service, despite the fact that the carers were living with the patient. These results suggest that the provision of palliative care may lessen the detrimental effect of the patient's illness on carer health. Similarly, the level of distress for the majority of carers remained the same even though the patients' illnesses were progressing.


The carers were recruited following consultation with specialist palliative care health professionals, who all predicted that the patients they cared for would survive for at least one month. In the event, only 52% of the patients survived, so allowing their carers to be reinterviewed one month later.

This study illuminated the difficulties associated with predicting prognosis in this group.

The type of personal assistance that carers provided was similar to that described by Atkinson (1992). Similarly, Clipp (1995) reported congruent patterns of assistance required by patients with AIDS (Acquired immune deficiency syndrome). From these results, it could be suggested that carers may benefit from practical nursing assistance rather than domestic help. However, studies on informal caregivers of AIDS patients described the area of least burden to be associated with direct patient care (Clipp, 1995; McCann & Wandsworth, 1992). In contrast, provision of emotional support, housework and transport was found to be more burdensome (Clipp, 1995). This suggests that providing nursing support focusing on the emotional aspects of care may be more appropriate than relieving the carers of practical nursing care.

It was not possible to find any other similarities between the carers except that a substantial number of them (80%) had not had assistance in their own home from any health professionals prior to the involvement of the community consultative palliative care service. When referrals are made to the community palliative care service they are usually made by a health professional, either following the patient's admission to an acute hospital or after noting that the patient's condition has deteriorated while at home. Many carers in the study sample were taking responsibility for patients in the final stage of their illness when they were referred to the palliative care service.

The study highlights the complexity of the role of caregiving and the variation in the amount of care required, in particular when the patient is physically independent, and the many ways in which caregiving impacts on the caregiver, especially in relationship to his/her health and well-being. In addition, it reveals that a substantial number of carers in the sample had not sought professional assistance until the patient was in the final stage of illness. The provision of palliative care nursing may have lessened the detrimental effects on carers' health and may have assisted in containing the carer's level of distress as the patient's illness progressed. It suggests, therefore that earlier referral to a palliative care service may increase the benefits for the carer.

Although some of the results in this study reflect the findings of other research on carers of other patient groups, (Clipp, 1995) the current study differs from others as it collected information on carers at the time of referral and then followed up one month later. The study quantified a broad range of tasks in which carers were involved that included personal and household tasks, and also asked about the satisfaction as well as the difficulties associated with caring. While this study has been valuable in obtaining descriptive information about palliative care carers, as well as insight into factors associated with the provision of palliative care nursing, due to the pilot nature of the study, the results need to be interpreted with caution in relation to the community service in the study and other populations. However there are lessons and evidence from this study that may be of assistance to service providers and researchers.

The palliative care community service in this study provides an accessible comprehensive 24-hour support to patients and carers in their own homes. The focus of the care has always been on the provision of symptom management, and psychosocial support with less emphasis on providing assistance with personal tasks to the patient and carer. Despite the absence of clear research evidence, these services , have been valued by palliative carers, and it is thought that the management of physical symptoms in combination with attention to emotional needs is rarely achieved in other settings (Field & James, 1994). Specialist palliative care services promote holistic care for the patient and the family which differs from other services that are required to serve many functions. Currently in Australia and elsewhere, changes in the health care service have led to increased difficulties in funding palliative care. Therefore it is perhaps more important than ever to be evaluating the care provided to ensure that the service is meeting the needs of patients their carers and the community. This study suggests that the provision of palliative care nursing is not related to patient status or carer burden. It has highlighted areas that may improve the service for the carers. Given the marked variation in care provided all carers should be assessed individually to identify their needs, risk factors in relation to their health and level of distress. Services could then be tailored to provide additional support for carers at greater risk.


This study has highlighted the need for more research using a larger sample size to further examine what should determine nursing care for palliative care patients and carers. Effects of caregiving on the health and well-being of carers need to be monitored so that palliative care services can focus on reducing the burden and maximising the benefits for carers. Implications for clinical practice include: earlier referral to a palliative care service and an independent assessment of carers to identify caregivers at particular risk of suffering a negative impact from caregiving.

The available evidence suggests that more focus on carers' needs and earlier referral to palliative care services would be beneficial to carers. This project begins the process of reinstating carers as clients of palliative care.


Atkinson F. 1. (1992) Experiences of informal carers providing nursing support for disabled dependents. Journal of Advanced Nursing, 17:835-840.

Brown, P., Davies, A. & Martens. N. (1990) Families in supportive Care Part 11. Palliative care at home. A viable setting. Journal of Palliative Care, 6:21-27.

Clipp, E. (1995) Informal caregivers of persons with AIDS. Journal of Palliative Care, 11 (2):10-18.

Dunlop, RA., Davies, RA. & Hockley J.M. (1989) Preferred versus actual place of death. A hospital palliative care support team experience. Palliative Medicine, 3:197-201.

Folkman, S., Chesney, M. & Christopher-Richards, A. (1994) Stress and coping in caregiving partners of men with AIDS. AIDS Care.

Hinton, J. (1994) Can home care maintain an acceptable quality of life for patents with terminal cancer and their relatives? Palliative Medicine, 8:183196.

Lubin, S. (1992) Palliative care - could your patient have been managed at home? Journal of Palliative Care, 8(2):18-22.

McCann, K. & Wadsworth, E. (1992) The role of Informal carers in supporting gay men who have HIV related illness. AIDS Care, 4(1):25 -34.

O'Henley, A., Curzio, J. & Hunt. J. (1997) Palliative care services and settings. Comparing care. International Journal of Nursing, (3):161-167.

NSW Health Palliative Care Working Party (1993) Report New South Wales: Department of Health.

Schofield, H., Bozic, S., Hermann H. & Singh, B. (1996) Family Caters. Some impediments to effective policy and service development. Australian Journal of Social Issues, 31(2)157-165.

Spiller, J.A. & Alexander, D.A. (1993) Domicillary care: a comparison of the views of terminally IN patients and their family caregivers. Palliative Medicine, 7(2):109-115.