������

A specialist 'Hospice at Home' (HaH) service commenced in 2006 in Mid West Ireland whereby participants received palliative care from a specialist team in their own home. An independent team was commissioned to evaluate the key stakeholders' perspectives of this service including patients, carers and staff. This original paper presents the findings from the patients receiving the HaH service.

Objective: The investigation aimed to examine the experiences of patients receiving Hospice at Home care from a new multidisciplinary palliative care team.

Method: Possible participants were drawn from the clinical register and screened for suitability. Fifteen participants were selected and interviewed using a structured interview schedule; interviews were transcribed and subjected to thematic analysis.

Results: Overall, participants' experiences of the service were positive with quality of care being highly rated. Participants regarded the service as supportive and responsive, particularly in relation to pain management and symptoms. Excellent communication and interpersonal skills from Hospice at Home staff members were highlighted. Overall, participants rated their own quality of life as high; although this cannot be attributed to the HaH service alone. Although not explicitly asked about, the possibility of being a burden to family remains an issue for those being cared for at home. The majority of participants were very satisfied with the service enabling them to be cared for at home. Areas for future improvements to the HaH service emerged, including discussions about advanced care directives, access and method of referral to the Hospice at Home service and patients' understanding of the service being delivered.

Conclusion: The Hospice at Home Service supported participants in facilitating their choice to be care for and to die at home. However, discussion with patients, family and HaH staff is recommended concerning place of death and the range of services provided by the HaH.

Participant's perspectives; Hospice; Home care; End of life care

There is growing evidence that the majority of people with a terminal illness would prefer to be cared for and die at home [1-7]. As a result, increasing the options available for patients to be supported in their choices to die at home is central to the national policy initiatives e.g. the Department of Health (UK), [1] and the National Advisory Committee on Palliative Care in Ireland [8]

Research indicates that the most significant factor in allowing people to be cared for and/or die at home is the provision of specialist palliative care in the community [9]. In Ireland, palliative care is described as: The continuing active total care of patients and their families at a time when the medical expectation is no longer cure. Palliative care responds to physical psychological, social and spiritual needs, and extends to support in bereavement. The goal of palliative care is the highest possible quality of life for both patient and family [8].

The Hospice at Home (HaH) concept is relatively new to Ireland and the service which is the focus of this study was the first to be offered within the country. Previously people were cared for at home with limited support for carers or admitted for end of life care to a hospice/hospital. The HaH service is based within a Care Centre which provides a comprehensive range of palliative care services in the Mid-West of Ireland and as recommended the service consists of a multidisciplinary team trained in specialist palliative care [10]. This care centre is funded via the Health Service Executive (HSE) and charitable donations. It provides a range of services including palliative care and elderly care. The HaH Project was a substantial enhancement of these services and offers a range of specialist palliative care services delivered in a community setting by a Multidisciplinary Specialist Palliative Care Team, supported by consultants in palliative medicine. Nursing staff form the largest professional group, along with social workers, physiotherapists, occupational therapists, pastoral care staff and clerical support. This service aims to provide care over seven days per week. The service can be accessed through internal referrals within the Care Centre and externally from the HSE primary care team, acute hospitals and other service providers. This affords participants and their carers/families access to disciplines to assess and manage the physical, emotional, psychosocial and spiritual dimensions of their illness. They also support and provide education and information to family and professional staff through collaboration with the primary care and acute hospital specialists.

Research was undertaken to evaluate this new HaH service, the first in Ireland, with the aim of examining whether it offered a viable and effective model for delivering a range of palliative care services to patients, their families/carers, members of the service and the wider community [11].This study examines the delivery of a service through a single agency; findings will have implications for this service and others who are providing similar services. The perspectives of bereaved and current carers is reported elsewhere [12]. To date there is only limited research on the voices of those receiving either end of life care or hospice care. Two earlier studies one Canadian and one Australian [13,14] focus on particular aspects of dying, including quality of life, carer burden and relationships. A recent UK study examined what people want at the end of their life and reported 63% of people want to die at home, however, this study did not include the voices of patients being cared for in their homes [15].

This original paper presents the patients’ perspectives; as service users of the first HaH service within Ireland, in terms of how it supports their choice to be cared for and die at home. Including the perspectives of service users is a feature of new services within the Irish healthcare system and is an important means of promoting ‘services that are safer, more accessible and of a higher quality’ [16]. Moreover, by involving the patients, it recognises them as experts by experience.

This research was approved by the local Mid-Western Research Ethics Committee and written consent was obtained from all participants. The vulnerability of participants undergoing palliative care is a major issue in conducting research with this group of people [17,18]. Involving users in the evaluation of a service poses a number of challenges for services, particularly when devising strategies to involve individuals who are ill and/or vulnerable and to ensure that the conditions of involvement are in proportion to service users’ abilities. This is of particular relevance for this study which involved interviewing participants with regard to end-of-life issues whilst being cared for in their own homes.

Research within palliative care can be challenging. Roscoe et al. [19] remind us that it can be methodologically complex as some participants and their families wish to concentrate on their remaining time together rather than being participants in research. Therefore, to be sensitive to this dynamic semi-structured interviews were chosen to examine the provision of care at the end of life through the HaH service. The interview schedule covered a set of open-ended questions which were divided into a number of themes relating to quality indicators of care including: ‘Quality of Care, Information and Communication; Management of Symptoms; Access to the Hospice at Home Service and Choice of Care (e.g. timing of referral to the service and preferred pre-death location); and Psychosocial Support’. Participants were offered an opportunity to identify any additional areas that they perceived as impacting on the quality of care they received, to recommend ways in which improvements could be made and to rate the overall quality of the service. Interview duration was determined by the interviewees and ranged from 15 to 45 minutes. Without tiring the participant, the interviewer at times repeated questions in different ways to facilitate recall of information and confirm the accuracy of the information.

The interviews were digitally recorded and transcribed verbatim. Thematic analysis was undertaken to ascertain the prevalence of issues in line with the evaluation of the quality of care indicators.

Participants

The demographic and illness characteristics of the people who participated in this study are outlined in Table 3. This sample was not intentionally stratified by gender, marital status, race, religion or primary diagnosis. Over half of the participants (53%) were aged between 55 and 74 years of age. Approximately two thirds of the participants were married or in a relationship (67%), were predominantly Irish and from Christian denominations. The majority of participants' primary diagnosis was some form of cancer (87%).

Quality of care

Information and communication

Management of symptoms

Access to the hospice at home service and choice of care

Psychosocial Support

What clearly emerged from this research was that the majority of the participants were satisfied with the Hospice at Home service. It enabled them to live and be cared for in their preferred place, which was at home; reflecting recent research that most people wish to die at home [15].

Importantly, pain management was well monitored and managed with team members quickly responding to medication changes. It seemed the service was meeting the priority of people to be pain free at the end of their life in line with the findings of the recent UK study [15]. One of the key goals of quality palliative care is management of pain, and this can be difficult, especially in home settings. However, in line with best practice, team members sought specialist advice and gave participants reassurance that the best care in relation to pain management was being provided.

Participants stated they experienced effective and supportive communication. A guiding principle and key standard on quality hospice care is that effective communication is fundamental particularly when it ensures respect and sensitivity for the participant and their family. Participants here were able to identify that one named professional was involved in their care reflecting the key component of best practice in community palliative care.

Dissatisfaction and criticism about care can often be attributed to ineffective communication rather than inadequate service delivery and the overall feedback regarding the HaH Service, even by the participants who voiced criticisms, was positive. It should be noted that as with other user satisfaction studies, a participant’s perspective of quality will vary and may be influenced by their relationship with their healthcare staff [20,21].

Providing appropriate and relevant information in response to participants’ needs is complex. This is due to a large extent to the difficulties that palliative services face when deciding how and when to provide the information in such a way that the process is sensitive to a participant’s ability to receive and understand the information. While services promote an ethos of participant choice and participant participation in decision making, this is highly dependent on adequately informed participants. Furthermore, the ways in which participants are told information and involved in decision-making are important determinants of satisfaction with care [22].

Within this study, it emerged that a number of participants were unclear that they were utilising the hospice at home service, or were unaware of the significance of this for them. This may have been for various reasons but it highlights the need for the HaH service to address these issues going forward specifically; regarding discussions about place of care, the need for advance directives to be in place and early explanation of the service with the patient in relation to their needs at the time of referral. Nonetheless, in the case of palliative care patients, consideration needs to be given to the amount of information which is conveyed and its timing. For example, terminology such as ‘hospice’ or ‘palliative care’ and ‘end of life care’ conjures up a range of associations and emotions for many people. It is therefore necessary to be sensitive to this and to have discussions about what the service is and what it can provide. Without adequate information and sensitive discussions, potential recipients of the service may have less than positive attitudes to hospice care, they may decline the service and miss out on many of its benefits. The complexity is further accentuated when staff members are under-resourced regarding time, training and expertise in communication on such subjects as death and dying [11].

The considerable importance of psychosocial needs for participants, particularly as death comes nearer, is of great significance for the home-based services and in some studies, it has been found that more emphasis is placed by participants on social rather than physiological needs and on being with family in familiar surroundings [15,23]. Participants here indicated that the involvement with the service supported them and their family. However, similar to the Canadian and Australian studies [13,14] the worry of becoming a burden was still raised by some and indicates the need for further discussion regarding what other support is available to minimize burden for themselves and their family.

Although, spirituality is cited as being to the forefront of palliative care and an important aspect in helping participants to reduce overall suffering, there was a relatively low prevalence of responses indicating use of the Hospice at Home Pastoral care service and indeed limited knowledge of this aspect of the service. Therefore, again highlighting that the services available require to be explained to patients and their families, to ensure that they are fully aware of what is available to support them.

Whilst this study did not attempt to specifically identify components that contributed to the participants’ quality of life it is clear that the majority of the patients considered their lives to be of an overall high quality. Some of the findings presented in this paper suggest an alignment between satisfaction with the HaH service and quality of life e.g. high satisfaction levels regarding communication on care issues. However, as these have not been formally explored it is not possible to state whether it is a result of the HaH service.

Enabling participants to choose where they live and die is a fundamental aim of palliative care and a key indicator of quality in hospice services. Care at home is considered by most as their preferred option and signifies for them the ability to retain some form of control over their lives. However, to ensure that the appropriate course of action is followed to meet the participant’s preferences, advanced care planning in this regard is crucial. The context in which the person lives means time is an imperative consideration and that without good planning and knowledge of services/resources available, the patient’s and carer’s choices may not be fully maximised.

In summary, what is evidenced here is that the Hospice at Home Service is person-centred and was valued by participants and meeting their needs. It achieves its goal of enabling people to live and be supported at home and adds to the limited evidence which hears the voices of the dying. This is supported by the key findings of high satisfaction levels in relation to the provision of care and support, communication and interpersonal skills from Hospice at Home staff members, timely monitoring and management of symptoms and medication. However, there was a need for continued discussion concerning the meaning of the hospice at home for patients, a review of how information regarding the service is communicated and followed up and importantly, for advance care directives to be implemented as early as possible by the service.

We would like to thank the participants who gave their incredibly valuable time at the end of their lives to make this study possible.