Patient experiences of nurse-facilitated advance care planning in a general practice setting: a qualitative study

General practices form the cornerstone of primary health care delivery in Australia. Between 2014 and 2015, 83% of Australians had consulted a GP at least once in the previous 12 months [13]. The majority (83%) of GP consultations are fully funded by Medicare, a universal public insurance scheme. A typical general practice is a private small business, consisting of several GPs, GPNs, allied health professionals and administration staff. GPNs undertake a range of duties in the practice, but in recent years they have taken a greater role in chronic disease management and patient education [14].

Advance Directives (AD) is a medical order with legal protections to ensure it is followed. In Australia, laws relating to AD varies according to each State and Territory, with AD either being supported by statute law (determined by legislation), common law (determined by judges’ decisions from case law), or a combination of the two. Attaining an AD can be completed as part of ACP but is not a requirement nor synonymous with ACP. ACP is an ongoing and sometimes iterative process.

Four general practices in eastern Sydney took part in the study. To be eligible to participate, the practice needed to be: located in eastern Sydney; fully computerised; medium sized (3–8 GPs); have a significant elderly patient base; interested in implementing ACP; have a GPN who is willing to lead ACP; and have not taken previously part in a systematic approach to ACP. There were no other exclusion criteria for GPNs.

The practices were recruited with assistance from the local primary health organisation, which helped to send out invitation letters to GPNs, and promote the study to GP and GPN participants of an educational workshop on ACP. Invitation letters were followed up with a telephone call from the chief investigator. Participation of the GPNs and the GPs in the intervention was voluntary. Each practice was compensated for the time required for the GPN to attend the training and deliver the intervention to each patient. The GPNs were not compensated by the investigators for participating in the study beyond their existing employment wages/salaries.

Five GPNs working in the practices received one-day training in ACP and implementation of the study. All the GPNs were Registered Nurses with a mean of 6 years experience in the general practice setting (range 2–13 years). None of the nurses had formal training in ACP or palliative care. The training workshop was supplemented with online modules containing videos of the recorded training sessions and other online resources. The educational resources covered: the practical aspects of discussing ACP with patients including the use of an ACP workbook and an Advance Care Directive template; communicating effectively regarding end-of-life issues; the legality of ACP in NSW; and the determination of decision-making capacity. The resources were developed by the investigators comprising of experts in ACP, palliative care, end-of-life communications, and primary care. A pre- and post-training knowledge questionnaire on ACP was administered to the GPNs and this assisted one of the investigators (AM), a clinical nurse consultant with expertise in ACP, to provide telephone support and mentoring throughout the study period. The participating GPs attended a brief educational session with a GP investigator (JR) on ACP. This session covered important aspects of ACP, especially issues that are likely to arise when completing and signing the ACP documents such as the legal validity of documents and assessing the capacity of the person signing legally-binding Advance Care Directives.

Following the training, the GPNs, in conjunction with the GPs, identified patients who might benefit from ACP. In most cases, this was done opportunistically when the patient was visiting the GP or the GPN for another reason. To be included, a patient needed to be at least 18 years of age whom the GP and the GPN believed may benefit from ACP and able to provide informed consent. Practices recruited patients either opportunistically (e.g. asking them during a routine consultation) or systematically. The latter involved the practices reviewing the list of patients using the “Surprise Question” (i.e. the clinician asks the question “Would I be surprised if this patient was to die in the next 12 months?”) and/or the Supportive and Palliative Care Indicators Tool (SPICT) and sending out invitation letters by post to patients identified as potentially requiring supportive and/or palliative care. Exclusion criteria included patients under the age of 18 years of age or those unable to provide written informed consent. Patients fulfilling the inclusion criteria and not meeting the exclusion criteria were provided with written information and consent forms and invited to participate in the study.

The GPs of participating patients completed a referral form. This is a 3-page document developed by the investigators and designed to communicate the GP’s contextual understanding of the patient to the GPN coordinating the ACP discussions. It contains information such as the patient’s health condition, disease trajectory and their understanding of the patient’s social and family contexts.

The GPNs then conducted ACP sessions with the patients. More than one session could be booked for the discussions, depending on the need. Patients were encouraged to bring their family/substitute decision makers/caregivers to the discussions. An Advance Care Planning workbook and Advance Care Directive template was used to guide discussions and to record the patient’s wishes if required [15]. At the conclusion of the ACP sessions, especially if any Advance Care Plans or directives were completed, the GPNs arranged a consultation with the patient’s regular GP in order to review and sign the forms.

Basic demographic information of patient participants and the clinical information contained in the completed GP referral tools were collected at baseline.

At the conclusion of the intervention, all patients that participated were approached for an interview. One researcher (OH), with no prior relationship with the participants, conducted semi-structured phone interviews (average duration of 30 min). Interview questions explored patients’ previous experiences with ACP, perspectives on the intervention, the GPNs’ performance, and whether participating in ACP had impacted their families in any way (see Appendix A). Although patients were given the opportunity to have a support person present during the interviews, all patients opted to be interviewed alone. One patient chose to self-complete the interview guide and mail the response.

The patients’ baseline demographics and information contained in the completed GP referral tools were analysed using descriptive statistics. Interviews were audio recorded and transcribed verbatim by an independent transcribing service. All transcriptions and the single self-completed questionnaire were imported into Nvivo (QSR International, Version 10). Inductive thematic analysis was performed by a primary coder (HM). Line-by-line analysis was performed to extract salient themes and concepts. An initial coding tree was developed by HM and compared to an independent tree based on a subset of interviews developed by JT. Overall there was a high convergence of coding by HM and JT. Diverse codes were discussed within the research team and either incorporated or refined. The remaining transcripts were read by HM and JT. HM continued to code the remaining transcripts and to develop the coding tree and JT noted any emerging themes from transcripts they observed. The coding tree and emerging themes were refined in an iterative process following discussions with the research team (including a senior researcher (JR), and researcher/study interviewer (OH), and medical student (JT)). Thematic saturation occurred when no new concepts were emerging from the data.

The study was funded by a research grant from the Royal Australian College of General Practitioners/HCF Foundation.

The study received approval from the UNSW Human Research Ethics Committee (HC14305).

Overall patients found the discussions with nurses helpful in working through ideas around end-of-life care. While patients varied to the extent to which they had previously thought about their wishes, they felt nurses facilitated a deep consideration of their priorities and values, “it made me think deeply about what was important to me” (Patient 10,101). Patients appreciated the interactive nature of the discussions as they felt comfortable to ask questions and raise concerns. Patients who had previously engaged in ACP reported that discussions with the GPN led to a greater consideration of issues, “this was a deeper discussion and we covered topics that made me rethink a few things … it gave me more scope” (Patient 10,101). Most patients appreciated the flexibility around the number and duration of visits. As one patient reflected, “we spent a bit of time doing it and it wasn’t rushed … when it’s the first time you sit down and do things like that you probably don’t have immediate answers” (Patient 30,201). However, patients’ preferences varied with respect to the depth, frequency and duration of discussions; one patient felt the discussions could have been enhanced by a broader discussion of the physical aspects of death and of spirituality, another patient felt discussions were at times vague, and two patients felt discussions could have been shorter in length. Overall, the discussions with nurses led most patients to reach a point of clarity and assurance about their wishes, “I found it extremely helpful to have [the GPN] explain several matters in the questions and it helped to clarify my thoughts … with a bit of guidance from her I was able to crystallise what I wanted” (Patient 10,103).

Patients reflected positively on the role of the GPNs, perceiving them to be knowledgeable, friendly, and helpful. Patients appreciated the openness and honesty of the nurses and their willingness to provide objective professional advice. As a result, patients felt comfortable to ask questions and speak openly, “it was a great advantage to be able to speak in a confidential manner to the practice nurse. You share a lot of thoughts about end-of-life with each other without them trying to influence you. They just explain things, leaving you free to express your thoughts too” (Patient 10,101). The empathetic nature of the nurses was also noted, “she allowed me to stop anytime I wished, if I found it upsetting to talk about things. She was very sympathetic and very helpful” (Patient 10,101). Patients drew contrasts between the therapeutic relationships with the nurses compared to previous experiences with GPs. Most felt the GPNs were more approachable and adept at dealing with psychosocial issues; “I feel more comfortable with [the GPN]. I don’t really see the doctor very often, it’s only for prescriptions and such. I just found [the GPN] was probably more approachable” (Patient 40,203).

Patients appreciated the opportunity to actively make decisions about their care, and to make these wishes known. They felt ACP had value in making their wishes known to family members. Patients also reflected on the benefits of ACP for individuals without living relatives or close family members, to guide health professionals should they be unable to communicate their wishes. The process of making one’s wishes known led to a sense of reassurance, “if I had a stroke for instance and I couldn’t talk, I would be happy in the knowledge that my daughter knew exactly what I wanted” (Patient 20,103). Patients reflected on the benefit of having a physical document outlining their wishes, “I felt comfortable having it written down to make sure that the family would know what my wishes would be” (Patient 30,201). Some patients felt documenting wishes was essential to provide clarity, especially given the unpredictability of health. As one patient noted, “you never know what the world brings, it’s good to have something like this on paper” (Patient 40,202).

Patients were fearful of physical and cognitive impairment. Documenting their wishes was seen as a way of safeguarding against unwanted medical procedures and ensuring their preferences would be respected by health professionals and family alike. One patient stated, “my daughter-in-law kept saying, ‘You’ve got to get it down in writing before they’ll do anything about it’” (Patient 30,207). Another patient felt documentation would prevent family members from overriding their requests, “they tend to interfere so it’s got to be clear to them what my wishes are” (Patient 40,202). However, for one patient there was a perceived limit to the power of the directive against family wishes, “It made me realise that it doesn’t matter what I say really, it would depend on others … if one of my children or someone says, ‘we’re going to resuscitate him’, no matter what I’ve said, it’ll happen” (Patient 10,103). Most felt the timing of the ACP was appropriate for them, but a few felt it could have been held earlier. Knowing when to initiate ACP was acknowledged by patients as difficult to judge and highly personal. Influential factors included patients’ age and health status.

Patients felt ACP benefitted their family members by protecting them from the burden of making decisions on their behalf. By clearly outlining their wishes, patients felt they could prevent feelings of uncertainty and concern for family members, “I think they would have made the same decisions in any case because they knew what I wanted, but I think that now they’ve got this piece of paper they don’t have to worry about it” (Patient 10,103). Patients felt this removed some of the weight of responsibility that family members might experience when making decisions. Some believed that having clarity on these issues provided a sense of reassurance to family, “they seemed to be relieved that they’ll know what my wishes are” (Patient 10,104). Some also felt the ACP may protect family members from potential disagreement or conflict resulting from uncertainty. As exemplified by one patient, “it’s like a will. In a will you leave whatever material things you have, you distribute it. Well, with your body you tell them what you want to do with your body … and then there’s no arguments” (Patient 30,201).

Many patients felt it was unnecessary to include family members in discussions with the GPN. They perceived this as a task they would complete independently, “as far as I’m concerned it’s not them making decisions, it’s me” (Patient 10,103). Overall patients felt their families were understanding and comfortable with this, “I think that they understand that I’ve been very independent for a long time and they respect my ideas and opinions, what I want to do with my life” (Patient 40,202). While some patients did not have close living relatives, the importance of autonomy was still highly valued, “I don’t think I’m isolated or anything like that, but I usually do as much as I can on my own … I think it was best on my own” (Patient 40,201). There were a few exceptions; a few patients did not include family as they felt consultations would have been inconvenient or impractical due to the distance of living relatives, and other commitments. Two patients felt it would be emotionally burdensome for the family to attend, “my sister...she’s got trouble on her own, never mind me to discuss my troubles with her” (Patient 20,105). One felt it was unnecessary to involve her family as she and her partner had already discussed their plans with their children and received advice from them, “they were quite aware of what we were going to be discussing there … and also [my husband] he’s gone through a very bad stage, we didn’t know whether he’d live or die on two occasions, so I didn’t want to impose on them when I didn’t have to” (Patient 30,207).

Patients appeared to view communication with family as separate to the ACP process. While most did not include family members in the discussions with the GPN or GP, many of the patients communicated their decisions with the family themselves. However, the extent to which they discussed their plans with family varied significantly. Some patients reported being very open and direct throughout the process of ACP, “as we were going along, we were telling my son and daughter-in-law about it … we’ve always been open about things, and they were aware of our preferences” (Patient 30,207). Others had less in-depth conversations with family, “we didn’t go into it very thoroughly, I just told them what I had decided … that I agreed to become an organ donor and a couple of medical things that I didn’t want, that’s all” (Patient 10,104). A few patients did not openly discuss their wishes but provided copies of the ACP document to the family.

While overall patients felt comfortable in discussions with the nurses, most found talking to their family much more challenging. Some patients acknowledged their own reluctance talk about death, “I’m pretty private about things like that” (Patient 30,201). Most patients acknowledged that family members could be reluctant to think or talk about death, “They weren’t that keen on discussing it. They accepted what I told them, but they didn’t want to go into it very deeply … I suppose they didn’t like the thought of me not being here. Some people don’t like to talk about death or accept that it’s going to happen” (Patient 10,104).

The extent to which patients discussed their wishes with different members of their family varied. For some, it was expected that certain family members would carry out the task of informing others. One patient had discussed her wishes with her sister, provided a copy of the ACP to her daughter but did not feel she could talk to her son at all stating, “I showed my daughter the form that said I didn’t want resuscitation. My son doesn’t handle it too well, he gets emotional and tells me not to talk about it” (Patient 20,102). For some patients the ACP process highlighted the importance of communication and encouraged them to engage loved ones in conversations about end-of-life, “it opened up a whole range of new ideas and discussions – like, I said to one friend, ‘Have you thought about it?’ and she said, ‘Oh, no, I’m not going to bother. My husband would know what I wanted.’ And I said, ‘I don’t think he would. He would probably think you would want to be revived and every care taken to keep you alive’” (Patient 10,101).

Openness to discussing end-of-life was influenced by the experience of the death of family members, and the reluctance of these family members to communicate their wishes,

“I couldn’t talk to them about what they wanted at the end of their life and I didn’t want this to happen with me … I wish my mother had let me or started the conversation. I wish my brother had also, but they didn’t, and I didn’t feel that I should intrude upon their privacy by bringing the matter up. So, I’m really very happy to have this thing out in the open and discussed” (Patient 20101).