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
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
]. Participants here indicated that the involvement with the service supported them and their family. However, similar to the Canadian and Australian studies [13
] 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.