Increasingly, patients requiring palliative care have the option of receiving specialized care at home, as opposed to being admitted to a hospital or receiving outpatient clinic services. Little research exists, however, about the best ways to organize palliative home care services. This study, conducted in Denmark, assesses the expectations of patients and caregivers before receiving palliative care and the evaluations of caregivers after palliative care was completed. Based on multiple interviews with both patients and caregivers, the researchers conclude that the expectations of both patients and caregivers towards palliative care services are very similar. Suggestions for improving palliative home care are provided.

Background: Today, patients have more options on how and where to receive palliative care. Some patients receive care within hospital units while others receive care at home. Unfortunately, little is known about how services should be organized to best serve the needs of patients and family alike. Past studies have either explored patient expectations before receiving services or evaluated palliative services after care has been dispensed. No study has examined both expectations and evaluations. The objectives of this study were to investigate the expectations of patients and caregivers before receiving care and to collect feedback on the care they have received. This study examined a palliative home care team that was part of a specialized department of palliative care in a Danish hospital. Patients requiring palliative care were referred to one of three settings for service provision: home care services; an outpatient clinic; or an hospital inpatient ward.

Methods: Nine patients and six caregivers completed interviews before receiving palliative home care and again two to four weeks afterwards. Eligible patients included those who were over the age of 50, had less than 2 months left to live, were cognitively coherent and had no previous experience with palliative care. A total of 26 semi-structured interviews were conducted. The interviews were based on a question guide developed in advance using World Health Organization's definitions of palliative care. The primary researcher conducted each interview. Data from the interviews were transcribed and evaluated using qualitative data software; key themes from the interviews were coded and reviewed during peer debriefing with two medical doctors, a psychologist, historian, and a philosopher.

Findings: This study found that patients and caregivers value the same things about palliative care. Participants had expectations surrounding four themes: 1) Access to specialized knowledge. Participants expected the palliative home care team to provide specialized knowledge about medical conditions and most importantly, provide the best possible pain management. 2) Sense of security. To feel secure at home, participants indicated they needed to know they could get in contact with specialists who knew them and could be reached 24 hours a day, and to know where the patient could be hospitalized. 3) Respite care for caregivers. Participants expected that the palliative home care team would help the caregivers by offering respite care. Especially important was that the palliative home care team was part of a specialized department with inpatient beds so that patients could be hospitalized if needed. 4) Offering activities. Some participants indicated a desire for the palliative home care team to offer non-health related activities like going for a walk.

Participants provided positive comments that their expectations were met regarding access to specialized knowledge and feeling secure. Some participants, however, expressed some concerns about living alone and felt more secure in a hospital ward. The palliative home care team did not provide respite care or other activities that were expressed by participants as being desirable in the first interview. Participants also commented on how the palliative home care team was organized. Generally, the one week waiting time for referral visits and one week for inpatient assessments was seen as reasonable. Some participants wished that the home care team could visit during the night.

Conclusions: When in the home, participants felt more secure having access to specialized knowledge from the home care team and knowing they could be admitted to an in-patient palliative unit if required. Organizers of palliative care should consider whether home care services have formal links to hospital based palliative care units.

Reference: Goldschmidt D, Schmidt L, Krasnik A, Christensen U, Groenvold M. "Expectations to and evaluation of a palliative home-care team as seen by patients and carers." Supportive Care in Cancer. 2006;14:1232-1240.

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