January 2005

Dear Readers: Here's the Article for this Month:

Name of article:

Dying to be Home?
Preferred location of death of first-generation Black Caribbean and Native-Born White patients in the United Kingdom

Author(s): Jonathan Koffman and Irene J Higginson

Abstract: Journal of Palliative Medicine 2004; 7/5: 628-636

Data in the literature show that the preferred place of death of a patient with advanced disease is in his/her own home.

The aim of this survey, conducted between 1999 and 2000, was to investigate and compare the following: a) preferences regarding the place of death with respect to their actual place of death and b) the involvement of their families in decision making as far as the location of the death was concerned. The subjects were deceased first generation black Caribbeans living in the UK and native-born white patients (a stratified random sample selected as a comparative group) who had advanced disease (cancer in two thirds p=0.03, with the remainder having circulatory disease, lung or renal diseases).

The survey was carried out in three inner London health districts characterised by economical and social deprivation. Ten months after a patient’s death, family members, or friends, close to the patient were interviewed by trained persons using a semi-structured questionnaire. They were contacted in their own homes and were asked a series of unequivocal questions exploring restrictions in the patient’s daily life activities and their personal self-reported burden and health status. Categorical and open-ended questions were also asked about issues relating to the place of death and the possible choices they were given in the hospital, or area, where the care was offered and they were also asked about where the death eventually occurred.

A total of 106 informed acquaintances of Caribbean and 110 white patients were contacted with a response of 47% and 45% respectively. The response rates obtained from family, or close friends, representing both groups of patients were low and the reason is probably due to their constant changes of residence. Those interviewed and considered the most appropriate for such an interview were spouses of both the white people (40%) and the black Caribbean patients (28%).

Seventy-six per cent of Caribbean and 86% of white deceased patients presented with restrictions in their daily life activities during the last year life. Caribbeans required more frequent help at night (71% vs 55% = NS), however all the other variables of daily living, as well as, gender, age and the main cause of death, overlapped. Twenty (43%) of black Caribbeans and 27% of white patients (NS) expressed a preference regarding the place of death and this was at home in 85% of the black people (two requested to go back to Jamaica) and 75% of the white population (NS). Of the latter group, another 17% chose hospice compared to only 1 black patient (5%). Of all the answers obtained, no patient wanted to die in a hospital. Fifty-three percent of Caribbean and 56% of native-born patients who wanted to die at home were able to do so.

From the interviews, two interesting points emerged: a) 27 white patients and only 17 black patients had been given enough choice about their place of death (p = 0.03) and b) family/caregivers of Caribbean patients had less choice about the place of death (p = 0.01). Only 9 black Caribbean patients died at home (17 patients had preferred this place), the remaining patients died in hospital including those patients who wished to return to Jamaica.

In total, only one fifth of all patients surveyed died in their own homes; while about 50% of the patients who had wished to die at home died elsewhere.

Why I chose this article

We gather from this study that the wishes of black and ethnic minorities to die at home are not always taken into consideration. Is this because they come from less favoured communities with respect to their social/economic status, or their numbers? It would be interesting to know if this is 1) because of cultural differences or prejudices; 2) due to a lack of proper communication that is influenced by ethnicity or preconceptions that bring about the exclusion of these patients, and their families, from the decision making process with regard to the choice for the place of care and death; or 3) is it mainly due to genuine situations of non-practical home care programmes in areas with particularly difficult circumstances or where reimbursement for home care services is not foreseen?

Regards,

Carla Ripamonti, MD
Member of the Board of Directors, IAHPC