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International Journal of Palliative Nursing 2014, Vol 20, No 2 63

AbstractLittle is known about the quality of the end-of-life care patients receive at home. This paper reports findings from a study that explored bereaved relatives’ and carers’ experiences of end-of-life care at home using the Care of the Dying Evaluation (CODE) questionnaire. Narrative data from questionnaires completed by 72 carers of patients who had died at home in the North West of England underwent qualitative analysis. In general good quality care was provided, but there were times when adequate support was not evident in relation to pain control and what to expect when death was imminent. The study provides useful information for those who provide end-of-life care at home.Key words: End of life l Carers l Quality l Carer experience l Tools

Nationally and internationally, supporting people to die at home remains a priority (Gott and Ingleton, 2011).

Data suggests that most individuals would prefer to die at home (Gomes et al, 2010a). End-of-life care has been the focus of key UK policy, as demonstrated by the publication of the End-of-Life Care Strategy (Department of Health (DH), 2008) and national guidelines. These documents have addressed gaps in end-of-life care provision and identified that those in the last stages of life should receive well coordi-nated care with adequate equipment and symptom control (National Institute for Health and Care Excellence, 2004; 2011; DH, 2008; 2009). However, little is known about the quality of end-of-life care that patients receive at home (Gomes et al, 2010b).

Measuring the quality of end-of-life care directly from those who are dying is complex (Mitchell, 2002). Some studies have asked bereaved relatives and carers to reflect on the care provided during the end stages of life (Koffman et al, 2012). It appears that relatives’ and carers’ views provide a valuable evaluation of the patient’s end-of-life care and their own experiences (Abu-Saad, 2008).

AimThis paper reports on part of a study that aimed to test the validity, reliability, and sensitivity of the Care of the Dying Evaluation (CODE) questionnaire, which is a shortened version of the Evaluating Care Health Outcomes for the Dying (ECHO-D) tool. In a previous study the ECHO-D tool was used with bereaved relatives in hospital and hospice settings (Mayland et al, 2012). However, the ECHO-D tool has not previously been used to assess the quality of care for people who died at home. The part of the study reported here aimed to use the CODE tool to explore bereaved relatives’ and carers’ experiences of end-of-life care for people who had died at home. This

paper reports the qualitative findings from the narratives included in the completed CODE questionnaires. The findings from the main study will be published separately.

MethodologyThe study adopted a mixed-methods approach, including use of the self-completed CODE questionnaire, which allowed the respondents to provide narrative data in support of their closed responses.

Ethical approvalEthical approval was granted by the National Research Ethics Service (approval number 11/NW/0159).

MaterialsThe CODE tool is a 40-item, self-completed questionnaire that uses closed questions but prompts participants to add narrative data. Example questions are provided in Box 1.

SettingThe setting was an NHS Community Trust in the North West of England.

Research

Quality of end-of-life care for those who die at home: views and experiences

of bereaved relatives and carersCarolyn Lees, Catriona Mayland, Angela West, Alison Germaine

Carolyn Lees is Quality Standards and Research Manager, Liverpool Community Health NHS Trust, 2nd Floor, Liverpool Innovation Park, Digital Way, Liverpool, L7 9NJ, England; Catriona Mayland is Consultant in Palliative Medicine, Aintree University Hospitals NHS Trust, and Senior Researcher, Marie Curie Palliative Care Institute, University of Liverpool; Angela West is Professional Lead for Counselling, Liverpool John Moore’s University; Alison Germaine is Senior Counsellor, Liverpool Institute for Palliative Medicine

Correspondence to:Carolyn Leescarolyn.lees@ liverpoolch.nhs.uk

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SampleA total of 291 consecutive patients who had died from an advanced incurable illness in their own home between July 2011 and December 2012 were identified from the Trust’s Preferred Place of Care register using the following inclusion criteria:

●Over 18 years of age ●Had an advanced incurable illness ●Had received care in their own home from a health professional employed by the Community Health NHS Trust involved.

Carers of these patients were then contacted, as described below.

Data collectionAs a previous study with bereaved relatives (Mayland et al, 2012) found no significant level of distress from their being asked about their experiences at 6 weeks and 3 months after the death, the following documents were sent via post addressed to ‘The Carer of’ the deceased individual a minimum of 2 months after the bereavement:

●A covering letter ●A participant information sheet ●A response form (with a unique identifier) ●A copy of the CODE questionnaire ●A freepost envelope.

A reminder letter and a second copy of the CODE questionnaire were sent out 4 weeks after the first mailing to non-respondents.

Data analysisNarrative data from the questionnaires was analysed using framework analysis. Prominent words and phrases were identified and the analy-sis was then expanded to associated key words or themes. This analysis began jointly among the research team members at regular meetings. The narratives were used to explore how the partici-pants’ experiences may have affected them. This was then broadened to the final analysis and identification of themes through a process of mutual agreement. This technique is valued for

its reliability and has been recognised as an effective way of generating practice-orientated findings (Richie and Spencer, 1994).

FindingsA total of 72 bereaved relatives, who had provided care for 72 individuals who died in their own home, returned a completed questionnaire (24.7% response rate). Most of the deceased people (79.2%) had died from incurable cancer. Four main themes and associated subthemes emerged from the narrative data. Each theme included both positive and negative experiences among the participants. The numbers in brackets represent the identification number of the participant.

Theme 1: Coordination and continuity of careSeamless care Multidisciplinary teamwork and the maintenance of standards of care across a 24-hour period were core to good end-of-life care. Participants recognised that any inconsistencies in care provision resulted in a negative experience for themselves as carers as well as for the patient:

‘District nurses during the daytime were very helpful but I felt those who came during the night were less helpful.’ (ID60)

Variation in practice or service provision was felt to have an impact on patient care:

‘He [the patient] had great trust in the district nurses who kept in touch all the time. He didn’t like change.’ (ID162)

Symptom controlTimely, coordinated, and responsive care was not always evident in relation to symptom control:

‘My mother was distressed at times and we believe it took too long to manage the pain properly.’ (ID188)

‘The GP and the district nurses were very nice but on reflection how they managed the pain relief was woefully poor ... my mum was subjected to unnecessary trauma.’ (ID290)

Witnessing someone in pain anguished and burdened the carers:

‘Having to see my husband distressed and in pain and agitated waiting for the nurses to come to administer his pain relief and make him more comfortable was awful.’ (ID129)

Box 1. Example questions from the Care of the Dying Evaluation (CODE) questionnaire

There was enough help with nursing care, such as giving medicines and helping him/her find a comfortable position in bed:

l Strongly agree l Agree l Neither agree nor disagree l Disagree l Strongly disagree

The nurses had time to listen and discuss his/her condition with me:

l Strongly agree l Agree l Neither agree nor disagreel Disagree l Strongly disagree

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EquipmentThe delivery of items to support end-of-life care at home was not always straightforward:

‘We asked for a bed alarm so that we would be alerted when dad got up [the carer’s father was wandering]. It was delivered the day after dad died. This was the only thing we asked for.’ (ID133)

‘The bed design was poor for a tall man. Even with an extension his feet were jammed against the footboard.’ (ID263)

Similarly, the collection of equipment following the patient’s death was highlighted as essential in reducing anxiety:

‘My only concern was that the bed my wife had been given was not collected until 4 days after she passed away. I feel this should have been collected straight away as it caused more stress to my kids and myself.’ (ID157)

Theme 2: CompetenceCompetence was highlighted by several of the participants:

‘My wife died at home as she wished. The visiting nurses were all exceptional, competent and considerate.’ (ID158)

‘In some instances I found some of the part time carers more competent than others.’ (ID228)

Regarding the coordination and continuity of care, one participant said:

‘The first doctor did not prescribe anything for my wife, a few hours later we saw a second doctor who did prescribe. My daughter questioned the first doctor. His reply was he knew she was going to die and so it was no good prescribing anything as it would not have helped.’ (ID53)

Theme 3: Compassion CaringCompassion was referred to in several of the narratives in relation to positive carer experiences:

‘The team who looked after my mum showed a great deal of respect and compassion for my mum, family and friends.’ (ID117)

‘All the district nurses were very good and very caring. Without their support I would not have got through this very sad and emotional time.’ (ID127)

‘The nurses who came to see him were very kind and caring and the family were very grateful to them.’ (ID211)

‘We could not have wished for better people. They were caring, professional and sympathetic.’ (ID88)

‘I cannot praise them enough. If only all nurses and doctors cared as much as this team did for my lovely dad.’ (ID263)

Compassion was fundamental to a positive experience during end-of-life care, and one participant identified that it was not always demonstrated by staff:

‘I appreciate staff have a very difficult job to do, I didn’t feel that they responded kindly or sensitively enough.’ (ID60)

DignityDignity was just as important following death:

‘Afterwards two district nurses came out and washed and changed mum after she had passed away, this made it so much easier for the family members to sit with her before she was taken from her home. It helped preserve mum’s dignity. I will never forget this.’ (ID238)

‘The care provided was of the highest [standard]. She was always grateful for all the help the community nursing team and others provided in her hygiene and comfort needs.’ (ID281)

The principles of self-worth and self-respect were reflected in the following extract:

‘The nurses looking after him at home were excellent ... the whole family are blessed with all the help and assistance we received. My father was a wonderful man and he deserved a dignified and peaceful death and we were very happy that this happened for him.’ (ID115)

Theme 4: Communication Without considerate communication with the patient and their family it cannot always be clear what support is required to help the patient ‘die well’ (Matzo and Witt Sherman, 2010). One participant described how the nurses:

‘... had no time to discuss all the facts’ (ID159).

Another recalled:

❛Participants recognised that any inconsistencies in care provision resulted in a negative experience for themselves as carers as well as for the patient ...❜

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‘She knew that death was not far away but we didn’t quite realise that.’ (ID126)

PreparednessCommunicating with the carers about what to expect both before and after death was central to sensitive and empathic care:

‘Prior to death we had discussions with the lead nurse and the GP. We knew exactly who to call when mum died.’ (ID163)

‘Prior to his death a member of the team explained to me who I would need to contact and in what order. This made things much easier for me and my family to deal with.’ (ID288)

‘He died at 12.50am so [we] spent a horrible night waiting for the powers that be to take my husband away. If we had been told what to do clearly in writing maybe we wouldn’t have felt so let down.’ (ID162)

‘No one told me that my husband was going to die so soon. They came out with certain com-ments but I was too tired to take in what they meant. No one told me he was dying.’ (ID13)

During this time families need to establish more of a ‘connection’ with the health-care team, particularly in relation to distressing symptoms (Kuebler et al, 2007), as illustrated here:

‘We were warned about the noisy rattle, so it was good to be prepared for this.’ (ID163)

End-of-life symptoms Communication in relation to certain aspects of care was good although, with other aspects such as medication and symptom control, negative experiences were evident:

‘Although very involved in discussions, our concerns in respect of pain relief and the level of dose to ease the pain as well as the restlessness do not appear to have been taken on board.’ (ID290)

‘They explained to me only when I kept asking them.’ (ID118)

Other participants were kept better informed:

‘My wife was under treatment and [received] twice daily visits from palliative nurses and her GP. I was kept fully informed of all aspects of her illness.’ (ID133)

‘The team kept me informed each time they visited and explained things to me so that I knew what to expect and to ease the pain for my mum.’ (ID117)

‘The healthcare team were wonderful and never too busy to talk to dad or me for as long as we needed to.’ (ID263)

Emotional and spiritual needsReligious and spiritual elements of end-of-life care were not considered part of the health-care team’s responsibility:

‘Surely it is not the role of the health carers to impose religion. What does this have to do with healthcare?’ (ID208)

‘It was never mentioned and it didn’t need to be.’ (ID263)

‘The healthcare team did not try to impose religion on the situation. If they did, I would have been very upset.’ (ID208)

‘Religious or spiritual care was never spoken about.’ (ID238)

Some families were offered emotional and practical support, but others were not:

‘They helped get in contact with my local priest and how to go about things.’ (ID88)

‘The healthcare team offered me no emotional or spiritual support.’ (ID152)

DiscussionHistorically end-of-life care has been poorly managed, with significant gaps in the provision of high-quality health services both in hospital and at home (The King’s Fund, 2010). The findings from this study indicate that in general good quality care was provided but there were times when adequate support was not evident.

Compassion and dignity are key components for relatives and carers in defining what is impor-tant during end-of-life care (Heyland et al, 2010), and this is reflected in the findings from the present study. Participants agreed that competent, knowledgeable health staff influenced the quality of end-of-life care, which mirrors previous work (Wittenberg-Lyles et al, 2013). There were exam-ples of well orchestrated and harmonised care with agencies and services working together, but there were times when gaps were apparent, such as in the provision of equipment for the home,

❛Compassion was fundamental to a positive experience during end-of-life care, and ... it was not always demonstrated by staff ...❜

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which is an essential component of good end-of-life care (National Audit Office, 2008).

Effective communication between health professionals, patients, and carers is a crucial part of end-of-life care (Thomas and Lobo, 2011). This includes verbal as well as written advice and guidance for relatives and carers on what to do when death occurs, as illustrated in this study. Key to addressing some of the issues raised in this paper is appraising the education and train-ing linked to emotional and spiritual support for patients and families during the end stages of life. Emotional and spiritual support provided by the health-care team is an important element of end-of-life care because of its ability to influence the dying person’s quality of life and to assist carers with their coping (Norris et al, 2005).

Undertaking research with bereaved carers using the CODE questionnaire as a tool will support the continuous evaluation of what is important for patients and their carers during the end stages of life if their choice is a home death. It could influence what support is provided and help to determine what infrastructure is needed to ensure a well managed death.

Strengths and limitationsThese findings should be viewed in the context of their limitations. The response rate (25.4%) for the CODE questionnaire was low and participants were self-selecting in terms of their recruitment, which could result in a response bias, although the findings appear to resonate with what other studies have found. There was no demographic data on non-respondents, limit-ing how representative and generalisable the key outcome findings are to the group as a whole. The participants were mainly female, of white ethnic origin, and affiliated to the Christian faith. A key strength of the research is that few studies have been done with bereaved carers of patients who have died at home. The assured anonymity may have allowed the participants to be honest, and some narrative data indicated that participants welcomed the opportunity to provide feedback on their experiences.

ConclusionGlobally the number of deaths is increasing, in part as a result of population growth (World Health Organization, 2004). There is a clear need to develop strategies to review the quality of end-of-life care for those who choose to die at home in order to improve the experiences of patients and their carers. Emotional issues around death present challenges in implementing tools that are sensitive to carers’ feelings but effective in

capturing both quantitative and qualitative measures. This study has demonstrated that the additional data obtained by offering the opportu-nity to provide narrative in the use of the CODE questionnaire supplied detail that may not have been captured by the use of the fixed response option alone. It allowed a deeper understanding of how experiences affected participants and those they cared for.

Declaration of interestThis work had no external sources of funding. The authors have no conflicts of interest to declare.

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❛.... in general good quality care was provided but there were times when adequate support was not evident.❜

●IJPN

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