None listed
Conditions
Brief summary
The purpose of the study is to determine if a planned Patient-Centred Family Meeting held soon after a patient’s admission to an inpatient palliative care unit, is feasible and acceptable to the patient, their family and clinicians. In addition, the study seeks to better understand the benefits and burden of participating in Patient-Centred Family Meetings from the perspective of the patient, family and clinician and to assess if the outcome measures that have been selected are suitable and feasible from the patient and family perspective. The primary hypothesis is that conducting a planned Patient-Centred Family Meeting soon after admission to a specialist inpatient palliative care unit is feasible and acceptable to patients, families and clinicians. The Patient-Centred Family Meeting will be the intervention in one of three specialist palliative care facilities. Two other facilities will be the control sites where standard care, that may include a family meeting, is provided and observed. Inpatients aged over 18 years with a terminal illness newly admitted to one of the two palliative care facilities who are able to consent and have a family member willing to participate will be included. A minimum of 10 patients and a minimum of an equivalent number of family members will be recruited for the intervention and control arms of the study.. More than one family member may be included in recruitment. At the intervention site, outcome measures will assess patient and family distress and satisfaction with quality of life at end-of-life, before and after the Patient-Centred Family Meeting. Interviews with patients and families and focus groups or individual interviews with clinicians will be undertaken after the Patient-Centred Family Meeting to understand the experience of these participants concerning the intervention. Focus groups or individual interviews with clinicians will also be undertaken at the control sites. A Family Meeting Observation Sheet will capture key components of both types of family meeting to enable comparison of family meeting practices and factors contributing to this practice. At the control site, the same quantitative measures will be undertaken at the same time points. Interviews with patients and families at the control site will only occur if a family meeting was convened as part of the standard care of the patient. A statistical electronic application will analyse the quantitative data and provide results. Patient, family and clinician interview data will be analysed using qualitative data analysis techniques. It is expected that this research will provide evidence about the acceptability, feasibility and value of family meetings in palliative care for patients, families and clinicians.
Interventions
The proposed intervention is a planned face to face Patient-Centred Family Meeting held soon after admission to an inpatient unit at the specialist palliative care facility where the intervention is being undertaken. The duration of the meeting will be 60 minutes, although this may vary depending on the needs of the patient and other participants. The patient needs and concerns are pre-eminent, along with those of the family member(s). The intervention is designed to be "patient-centred" with t
The proposed intervention is a planned face to face Patient-Centred Family Meeting held soon after admission to an inpatient unit at the specialist palliative care facility where the intervention is being undertaken. The duration of the meeting will be 60 minutes, although this may vary depending on the needs of the patient and other participants. The patient needs and concerns are pre-eminent, along with those of the family member(s). The intervention is designed to be "patient-centred" with the focus of the meeting being on the patient setting the agenda in advance so that their concerns and issues are addressed. This is in contrast to the usual model of family meetings where the agenda is led by the health care team. The meeting will be scheduled as soon after the patient's admission as is practicable rather than on an "ad hoc" basis and be conducted in a private space unless the condition of the patient makes this inappropriate. The patients will be requested to invite the family member(s) they wish to attend the meeting and will be encouraged to invite whomever they consider as "family", and not necessarily blood relatives. The meeting will be convened with members of the palliative care multidisciplinary team, with facilitation provided by the palliative care consultant or registrar. Discussion at the meeting may include clinical and psycho-social issues, preparation for death, and other key areas of importance for that patient and family.
Sponsors
Professor Jane Phillips
Study design
Allocation
Non-randomised trial
Intervention model
Other
Primary purpose
Treatment
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Patient inclusion criteria (a) Adult patient aged over 18 years who have been admitted to a participating specialist palliative inpatient facility within the last 7 days; (b) Have a terminal illness (a prognosis of less than 12 months, but expected to live at least 14 days i.e. the average length of the protocol); (c) Able to identify a family member (or equivalent person) who consents to participate in the study involving attendance at the Patient-Centred Family Meeting or standard family meeting if convened; (d) Are classified in accordance with the Palliative Care Outcomes Collaboration (PCOC) palliative care phases at time of recruitment as being either ‘Stable’, ‘Unstable’ or ‘Deteriorating’; (e) Able to physically participate in a Patient-Centred Family Meeting assessed using the Australian Modified Karnofsky Performance Score and obtaining a score of greater than or equal to 30; (f) Be able to read and speak English (patients who are visually impaired will be offered assistance with the consent forms and surveys); (g) Be able to provide valid, informed consent. Family inclusion criteria (a) 18 years of age or older; (b) Invited by the patient to participate in a Patient-Centred Family Meeting; (c) English language and cognitive skills are sufficient to complete baseline information and validated questionnaires and who are able to contribute effectively in the Patient-Centred Family Meeting or standard family meeting if convened; (d) Be able to provide valid, informed consent and participate in the Patient-Centred Family Meeting.
Exclusion criteria
Patient exclusion criteria a) Terminal phase (Phase 4 measured by the PCOC Phase assessment) or imminently dying; b) Presence of delirium measured by validated tool e.g. NuDESC (Leonard et al.); c) Be cognitively impaired measured by the Mini-Mental State Examination assessment with a score < 24/30; d) Not able to identify a family member (or equivalent person) who agrees to participate in the Patient-Centred Family Meeting or standard family meeting if convened; e) Not able to read and speak English; f) Patients who experience significant family conflict such as an abusive family relationship or history of domestic violence. Family exclusion criteria (a) Less than 18 years of age;; (b) Has been excluded by the patient to participate in the Patient-Centred Family Meeting; (c) English language or cognitive skills are not sufficient to complete baseline information and validated questionnaires and who are unable to contribute effectively in the Patient-Centred Family Meeting or a standard family meeting if convened.
Outcome results
None listed