Family Practice Advance Access originally published online on July 29, 2005
Family Practice 2005 22(6):644-646; doi:10.1093/fampra/cmi071
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Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care
a Department of Health Sciences, University of Leicester and b Centre for Health Sciences Research, School of Population and Health Sciences, University of Newcastle upon Tyne, UK.
Correspondence to Freya Tyrer, Department of Health Sciences, University of Leicester, 22–28 Princess Road West, Leicester LE1 6TP; Email: fct2{at}le.ac.uk
Received 27 January 2005; Accepted 31 May 2005.
Tyrer F and Exley C. Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care. Family Practice 2005; 22: 644–646.
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Abstract |
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Background. Specialist Hospice at Home (HAH) services play an important role in the provision of care for people who choose to die at home.
Methods. A pilot evaluation of a new HAH scheme in East Midlands, UK was carried out between January and December 2003, in which routine data were collected and analysed.
Results. In 2003, 155 people received the HAH service. Most patients (83%) were over the age of 60 and had a cancer diagnosis (92%). Almost one-third of patients waited for 2 days or longer to receive care from the HAH scheme. These patients were around three times as likely to be in an inpatient hospice (RR = 3.27; 95% CI = 1.19–8.95) or an acute hospital (RR = 2.85; 95% CI = 1.33–6.09) when they were referred. The median length of service use was 4 days.
Conclusions. The HAH service enabled people to die at home in the last days of life. Given the aging population, we would expect the demand for such services to further increase. Shortcomings identified included delay in receiving care for people moving to home from hospices and acute hospitals.
Keywords. Community, Hospice at Home, palliative care.
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Introduction |
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In 2003, the Department of Health published plans to provide access to specialist care services for patients ‘to enable them to live and die in a place of their choice’.1 Research suggests that many people would prefer to be cared for and to die in their own home,2 yet only around a quarter achieve this.3,4
Many different models of hospice service care provision exist internationally. This paper focuses on the UK model where this study was undertaken. In this country, the provision of hospice-style care in the home, or Hospice at Home (HAH) was first pioneered in 1969,5 but in recent years more emphasis has been placed on HAH services, not only to enable people to die at home if they wish, but also to manage complex needs and provide support to carers and families of people who are dying. Each service model varies according to resources available, staff capacity and ability to provide 24-hour care, seven days a week, but most aim to provide intense support and care at home in the last few days of life only.5
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Methods |
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Between 1 January 2003 and 31 December 2003, a pilot evaluation of a new HAH scheme in East Midlands, UK was carried out. The service was developed in collaboration with the District Nursing Service and aimed to provide ‘hospice-style’ care at home for the last days of life. Patients could be referred to the service if they were in acute or community hospitals, a hospice (i.e. inpatient hospice), or if they were already at home. The team comprised one project leader, one clinical nurse specialist and a number of staff nurses. Referrals to the service were made primarily by district nurses, who remained involved in patient care throughout. Twenty-four hour care was not provided; instead, weekend and overnight cover was supplied by nurses from the voluntary sector where needed.
Routine data were collected throughout 2003 by the HAH team at the time of a referral to the service. Information collected included: age; gender; ethnicity; location when referred; diagnosis; date referred to the service; reason for referral; and other agencies involved with care. Information was updated if the patient was discharged or died. This short report describes patients receiving the HAH service in terms of age, gender, ethnicity, diagnosis and location when referred and reasons cited for needing the service. We also describe and analyse these characteristics according to whether there was a delay (
2 days) between referral and receiving the service, using relative risks [and 95% confidence intervals (CI)] alongside a chi-square test for independence to assess the null hypothesis that the risk in each category was the same; P < 0.05 was deemed evidence against this hypothesis. In addition, we describe length of service use, including the portion of service use for patients who did not die whilst under HAH care, but transferred to other care organisations.
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Results |
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In 2003, 155 patients received the HAH service. The population comprised 80 (52%) men and 75 (48%) women, aged between 20 and 99 years, with a median age of 72 years (interquartile range: 64–80). Most patients (85%) were over the age of 60, were white (British, Irish or other) (83%), had a cancer diagnosis (92%) and were already residing at home when they were referred (68%). The most common reason cited for needing the HAH service was "care and support of the family" (n = 74; 46%) followed by "patient wanting to die at home" (n = 34; 22%) and "deteriorating condition" (n = 33; 21%).
Although the majority of patients (n = 103; 66%) received care from the HAH service on the same or following day of being referred, there was a delay (2 days) in time between referral and receipt of care for a substantial proportion of individuals (n = 45; 29%). This delay was around 3 times as likely for patients residing in a hospice or an acute hospital compared with those already at home when they were referred (RR = 3.27; 95% CI = 1.19–8.95 and RR = 2.85; 95% CI = 1.33–6.09, respectively). Age, gender, ethnicity and diagnosis were not associated with a longer delay (Table 1).
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The mean length of HAH service use was 10.8 days and the median was 4 days (interquartile range: 1–8 days). Almost two-thirds of patients (n = 95; 61%) received care for no longer than one week, while five patients received care for more than six weeks. This latter group of five patients comprised two men (aged 28 and 74) and three women (aged 28, 31 and 76), with a brain tumour (n = 2), lung cancer (n = 1), multiple sclerosis (n = 1) and end-stage liver failure (n = 1). In total, 118 (76%) patients died at home whilst receiving HAH care. The remaining patients were transferred to other care organisations or care was stopped either by choice of the family or the service.
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Discussion |
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This study highlights the importance of HAH services in enabling people to stay at home in the last days of life or to return home if that is where they choose to die. Given the aging population, there is likely to be an increased demand for these services in the future, which will impact upon the workload of district nurses, GPs and specialist palliative care services. We are unable to comment on people dying of non-malignant diseases because only 8% of people in our study were dying from other causes, but it is recognised in the literature that this group may be more likely to receive inadequate service provision,6 thus improved access to HAH care may be important for these individuals.
This was a small-scale pilot evaluation. Differences in patient characteristics may have existed that we were unable to detect because of the small numbers. In addition, there may have been other barriers to receiving HAH care (e.g. referrers not informing patients or not knowing of the scheme's existence, language barriers) that we are unable to comment on because we did not collect this information. However, this study does highlight concerns regarding the delay in being referred to the service and receiving HAH care. One-third of patients waited for 2 days or longer to receive care and a significantly larger number of these people were returning to their homes from a hospice or an acute hospital. This is not entirely surprising, with the inherent difficulties surrounding transfer of patients to home from elsewhere (e.g. delays in arrival of specialist equipment to the home, discharging patients and staff organisation). Although this can be identified as a shortcoming of the service given that one of the service aims was to provide care in the last days of life, it can be argued that these patients were still receiving care and treatment for their terminal illness, even if it was not in the place of their choosing. However, in more than two-thirds of cases, the reason cited for the referral was for care and support of the family or the patient choosing to die at home. Thus for families and patients, this delay may be unacceptable.
Conversely almost one-third of patients received care for more than one week and five patients received care for more than six weeks. This suggests that care was being provided when death was not imminent and may reflect the difficulties in predicting course of death and balancing optimal care among people at this difficult time. However, less intense support and care provision for these patients may be necessary.
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Declaration |
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Funding: South Leicestershire Primary Care Trust.
Ethical approval: full ethical approval was sought from and approved by Leicestershire Health Authority Research Ethics Committee.
Conflicts of interest: none.
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Acknowledgments |
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We gratefully acknowledge the South Leicestershire Primary Care Trust who provided funding for this study and colleagues Sue Peet and Hilda Parker.
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References |
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1 Department of Health. Planning and Funding Specialist Palliative Care Provision. London: Department of Health; 2003.
2 Townsend J, Frank AO, Fermont D, Dyer S, Karran O, Walgrove A, Piper M. Terminal cancer care and patients' preference for place of death: a prospective study. Br J Med 1990; 301: 415–417.
3 Tiernan E, O'Connor M, O'Siorain L, Kearney M. A prospective study of preferred versus actual place of death among patients referred to a palliative care home-care service. Ir Med J 2002; 95: 232–235.[Medline]
4 Karlsen S, Addington-Hall J. How do cancer patients who die at home differ from those who die elsewhere? Palliat Med 1998; 12: 279–286.
5 Hospice Information Service. Hospice and Palliative Care Facts and Figures 2005. Hospice Information: London; 2005.
6 Exley C, Field D, Jones L, Stokes T. Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-carers and health care professionals. Palliat Med 2005; 19: 76–83.
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