The Responses Study
The Responses Study
The issue Patients who are living with a life-limiting and progressive illness are often
 encouraged by the healthcare professionals looking after them to undergo a process called
 Advance Care Planning (ACP). An advance care plan is a written guide of a patient's likes,
 dislikes, wishes, and the treatments they would want to refuse or the rituals they would want
 to follow - whether during illness or at the end of life. The planning process helps patients
 and their relatives think about different scenarios, and the plans that would be used by
 medical staff if that patient becomes too ill to communicate. ACP discussions can take many
 forms and are often described as a process.

 It is accepted by healthcare professionals that ACP is useful to patients and their
 relatives. Research has also focussed on the positive nature of ACP, traditionally looking at
 issues such as how many patients have achieved their wishes and why, what makes ACP possible,
 and what prevents patients or healthcare professionals from starting these discussions. Some
 research has also looked at how patients experience the actual process of ACP itself.

 However, there has been little research into the effect ACP discussions can have on a patient
 and their relatives, or how patients react to ACP discussions. As a result, researchers and
 healthcare professionals do not have a full understanding of the psychological impact on
 patients and their families, and any resulting changes in patients' outlook, emotional state,
 family and clinical relationships, and their behaviours.

 Learning more about how patients respond to such important and challenging discussions about
 their care will be vital in improving healthcare professionals' understanding of how best to
 carry out ACP conversations, and how best to support patients and their relatives following
 ACP conversations. It is also important to explore not only the benefits of ACP but also the
 potential downsides or unexpected problems of having such a difficult conversation.

 What the investigators will do The aim of this study is to explore how patients are affected
 by discussions about their future care, and if these discussions affect how patients think or
 feel in themselves and what they do. The investigators will conduct qualitative interviews
 with patients living with a life-limiting illness who have already had ACP discussions with a
 healthcare professional, to explore how and in what ways ACP discussions have affected
 patients and their families. Qualitative interviews are semi-structured interviews that are
 designed to explore issues and what these mean to people in-depth, in order to gather rich
 data that provides insight into a person's perspectives. They are well suited to exploring
 subjects about which little is yet known, and also subjects which can be sensitive or
 challenging.

 Location of the study, and participation The study will be conducted from Princess Alice
 Hospice in Surrey, which provides both inpatient and community palliative care services to a
 large catchment population of approximately 1 million people, in South West London and
 Surrey.

 The investigators aim to recruit 20 participants to represent a broad range of clinical and
 demographic characteristics, such as age, gender, ethnicity, diagnosis and borough in which
 they live, in order to explore the experiences of as diverse a group as possible.
 Participants will be interviewed in a place convenient for them, such as in their home or the
 Hospice.

 Who the investigators are The study will be led by a clinician currently working in
 Palliative Care, as part of a Masters in Palliative Care, being undertaken at King's College
 London. The researcher will be supervised at all times by Dr Jonathan Koffman, Reader in
 Palliative Care at King's College London, who possesses over 20 years of experience in
 undertaking research among patients living with and dying from advanced disease, and their
 families.
Inclusion Criteria:

 1. Aged 18 and over

 2. A palliative care diagnosis confirmed by a referring healthcare professional, i.e. a
 diagnosis of a life-threatening or life-limiting illness

 3. Have completed one or multiple ACP discussions as defined below, at any time prior to
 referral to study, with a healthcare professional

 4. Sufficient cognitive capacity to provide informed consent and complete an interview

 For the purposes of recruitment for this study, ACP is defined as:

 Any significant discussion with a healthcare professional where patients have discussed
 their values, goals or preferences for future care. These can include discussions about
 wishes for further disease-modifying treatment, wishes for intensity of general medical
 care, preferred places of care and death, discussions around resuscitation and transfer to
 hospital, and completion of advanced directives. Healthcare professionals can include any
 doctor, nurse or allied health professional.

 Exclusion Criteria:

 1. Any patient the researcher has ever met or cared for in a clinical capacity, or knows
 in any other capacity

 2. Any patient who has only had ACP discussions with a volunteer (trained or untrained)
 or non-healthcare professional

 3. Inability to provide informed consent

 4. Any patient deemed by the referring healthcare professional to be potentially too
 unwell or frail to undertake an interview