Research
Advance care planning in care homes: the experience of staff, residents, and family members
Abstract
Background: In the UK, implementation of the Gold Standards Framework in Care Homes (GSFCH) programme is being promoted to develop the quality of end-of-life care for frail older people living and dying in care homes. Advance care planning (ACP) discussions are an integral part of this. This study explored experiences of initiating and completing these discussions in homes undertaking the GSFCH. Methods: A qualitative descriptive study was carried out in three nursing care homes implementing the GSFCH programme. Following an ACP discussion, 28 semi-structured interviews were conducted with the resident, a family member, and the staff member who undertook the ACP. Content analysis was then conducted. Findings: Three main categories of findings emerged: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions. Staff understanding of ACP varied, affecting the depth of their discussions. Documentation was either a useful prompt or limited the discussion, blocking opportunistic cues and encouraging a ‘tick-box’ exercise. Residents were open to ACP, although the way it was introduced could affect the results. Families were comforted that the resident’s future care had been considered. Education was identified as being important, and role modelling ACP enabled a member of staff to develop their skills and confidence in it. Conclusions: Care home staff need to develop the knowledge, skills, and confidence to engage in discussions around end-of-life care. The assistance of a trained facilitator who role-models this process should be explored. Key words: Advance care planning l ACP l Care homes l Older people l Elderly l Gold Standards Framework
Louisa Stone is Research Assistant/Care Home Facilitator, Care Home Project Team; Julie Kinley is Research Nurse, Care Home Project Team; Jo Hockley is Nurse Consultant for Care Homes, Care Home Project Team, St Christopher’s Hospice, 51–59 Lawrie Park Road, Sydenham, London, SE26 6DZ Correspondence to: Louisa Stone l.stone@stchristophers. org.uk
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A
dvance care planning (ACP) is a voluntary process of discussion between an individual, their family or carer if available, and their care providers. It is an opportunity to look to the future and discuss and document a person’s views about their care, particularly for those with life-limiting, progressive illness. This process should consist of ongoing discussions and be reviewed regularly (Seymour et al, 2004). Documentation may take the form of an advance statement of wishes and preferences, an advance decision to refuse treatment (a legal document refusing specific treatment), and/or a surrogate
decision maker in the appointment of a Lasting Power of Attorney for Health and Welfare. These documents are then available to guide care if the individual loses the ability to make decisions or communicate their wishes (Royal College of Physicians et al, 2009). Advance care planning is not a new concept. In 1991 the US Patient Self-Determination Act advocated the use of advance directives (Teno et al, 1997). This notion of looking to the future and documenting wishes has been further adopted internationally and across all care settings. Several initiatives have encouraged this, and various tools help to support documentation, including Preferred Priorities for Care (Horne et al, 2009) and Respecting Patient Choices (Blackford et al, 2007). There are also frameworks, such as the Gold Standards Framework in Care Homes (GSFCH) (National Gold Standards Framework Centre, 2012), which use a structured approach to enable care homes to deliver quality end-of-life care (EoLC). The GSFCH is a 2-year programme, consisting of four workshops over the first year followed by a year when the care home further embeds the learning. As a result of the National End of Life Care Strategy in England (Department of Health (DH), 2008) and the promotion of various EoLC tools, ACP has become an important component of care provision in nursing care homes (NCHs)—facilities that provide continual nursing care for residents. In England, 19% of deaths occur in a care home (DH, 2012). With the projection of an ageing global population (Jacobsen et al, 2011; Rutherford, 2012) it is likely that the number of people living and dying in a care home will increase. People are also being admitted to care homes in a frailer state (Froggatt et al, 2008), with the majority dying within a year of admission (Kinley et al, 2013). Advance care planning is reported to decrease inappropriate hospital admissions of frail elderly residents with palliative care needs (Beynon et al, 2011; Shanley et al, 2011). However, the quality
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Louisa Stone, Julie Kinley, Jo Hockley
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Research
and content of ACP varies (Silvester et al, 2012). Seymour and Horne (2011) pointed out that ACP is about more than just future medical care, also encompassing the goals and values personal to the person, whether social, spiritual, and/or psychological. This was echoed by Storey and Sherwen (2013). ACP is not a simple process. Several studies have explored experiences of ACP with specific groups of participants in care homes. Froggatt et al (2009) found that managers identified factors such as staff confidence, time, family dynamics, and willingness or ability to talk as affecting ACP discussions. Seymour et al (2004) used focus groups to discuss the views of older people, and issues such as talking about death and dying, alleviating burden on families, and euthanasia were highlighted.
Aim This study aimed to explore the experience of staff, residents, and families having ACP discussions in an NCH context. Historically these settings have had a rehabilitative culture.
Methods
Research design
A qualitative descriptive interview design was adopted (Sandelowski, 2000).
Setting and participants NCHs undertaking Phase 5 of the GSFCH programme across one Primary Care Trust in south-east England were invited to take part. Care homes that only provided care for residents with dementia or learning disability were excluded, as were residents with a diagnosis of dementia. Three NCHs were invited and all three participated. These homes had 54–58 beds. One was privately owned, one charity-run, and the other part of a cooperative. All used the GSFCH Looking Ahead document (National Gold Standards Framework Centre, 2011). The potential study participants included all residents and family members as well as the care home staff who had led their discussion. It was intended that up to 15 resident– family–staff triads would be recruited.
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Recruitment and data collection A visit to each NCH that met the study criteria was arranged through the local GSFCH facilitator. This enabled the researcher to meet each nurse manager and gain permission to discuss the study with the care home staff. Following this initial meeting a teaching session on ACP was undertaken for the NCH staff. This was given by an experienced clinical nurse specialist in palliative care at the NCH and ensured that all staff had knowledge
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Box 1. Resident interview guide I would like to look at what led to your decision to undertake advance care planning (ACP) with the care home staff: ●
Can you share with me what you understand about ACP?
●
Can you tell me about how you first heard about ACP?
●
Can you explain why undertaking ACP was important for you?
Thinking about the day that you met to undertake ACP: ● Who
took part in your ACP conversation?
Timing of ACP: ●
Do you feel this was the right time to have an ACP conversation?
●
Can you explain what made this the right time for you to have such a conversation?
Process: ●
How did you feel about the ACP conversation?
● Who
led the ACP conversation, how was this decision made, was it a good decision and why?
● Were
there any subjects that you found more difficult to discuss?
●
Did you have an opportunity to discuss everything that was important to you?
●
Does the ACP you made contain everything that is important to you?
● Would ● Was
you be willing to share with me what you chose to put in your ACP?
documentation completed during this conversation?
Thinking back today about your ACP conversation: ●
How do you feel now about your ACP conversation?
● Was
a plan made to review your ACP?
of what an ACP conversation was and how it could best be undertaken. Information sheets and consent forms were given to each staff member. Following subsequent ACP conversations, the staff member undertaking the discussion invited the resident and family members (if present) to take part in the study and contacted JK. The resident and family member were then approached by JK, who explained the study, giving an information sheet and consent form. If the resident and family member agreed, an interview was arranged within a few days. Semi-structured interviews were undertaken. The interview schedule (Box 1) was reviewed by members of the Care Home Project Team at St Christopher’s Hospice, who were used to undertaking ACP discussions in a care home setting. It was not piloted. All interviews were undertaken by JK in the NCH. Residents were given the opportunity to be interviewed alone or with their family member present. They were also asked whether they would be willing for the research team to have a photocopy of their ACP. Individual interviews were held with staff. All interviews were digitally recorded and transcribed verbatim.
Analysis The transcriptions were stored using NVivo 8 software. Content analysis (Polit and Beck, 2006)
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Table 1. Interview triads Residents Staff (n)
Diagnosis
A
2 (one interviewed three times, one interviewed twice)
5
Cancer of the oesophagus and breast (1), cerebrovascular accident (1), muscular dystrophy (1), unknown (2)
B
2 (both interviewed twice)
4
Heart failure (2), ischaemic heart disease, peripheral vascular disease (1), diabetes (2)
3
C
2 (both interviewed once)
2
Heart failure (1), rheumatoid arthritis (1)
2
1
was initially undertaken with each group of transcripts (the collective staff transcripts, resident transcripts, and family member transcripts). JH, JK, and LS independently coded and compared the first two transcripts in each of the three groups. Identified themes and categories were discussed and agreed. LS undertook the remaining analysis. Following analysis of the separate groups it became apparent that similar main categories had emerged. The resident, family, and staff groups were therefore merged to form a more coherent whole.
thoughts on EoLC, which could include specific medical treatment. These documents would be used to guide decisions if a person could no longer communicate. Others felt it applied to everyday care and one staff member only discussed the resident’s funeral plan.
Ethics
Residents’ and families’ understanding of the term also varied. One resident associated ACP with EoLC, appearing to think that if someone was having such a conversation it implied that they were going to die soon.
Ethical approval was granted by Bromley Local Research Ethics Committee in 2009 (reference number 08/H0805/76). Confidentiality and anonymity were ensured throughout the study. Prior to analysis all data was re-coded.
Findings Twenty eight interviews were undertaken with eleven residents, six family members, and six staff (five registered general nurses and one health-care assistant). Care staff were involved in more than one discussion. Interviews were held within a week of the original ACP discussion. There were five complete staff–resident–family member triads (Table 1). Only one of the staff members reported having previous experience and training around palliative care and ACP. Although all four workshops of the GSFCH programme had been completed, staff had only recently begun to initiate ACP conversations. Three main categories of findings emerged from the analysis: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions.
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Family members (n)
(n)
‘… you get to know the people more than the ordinary plan. Because you have to plan the future—the present and the future ... you get all the views and all the expectations from them, I would say.’ (Staff member 2, NCH A)
‘Well advanced care means near to death, doesn’t it?’ (Resident 9)
Others appeared to associate it with general everyday care given by the staff. ‘Well, I’m not quite sure ... Continues all the time, yes, in my care, sort of thing ... And I can ask questions, you know, where I like and I get sensible answers for them.’ (Resident 3)
The majority of the family members appeared to have a clearer understanding of the purpose of ACP. They took on board how it could be used to help look at future care and to take into consideration the wishes of their loved one. ‘Well, to me it’s what happens to them in the future ... and er, what you need, their needs are for later you know.’ (Family member 5)
Understanding ACP
Undertaking ACP discussions
When asked to define the term ACP, descriptions varied between staff members, with no clear concept of what it was. A few staff understood the importance of documenting residents’ views and
The decision to undertake an ACP conversation was usually initiated through the monthly GSFCH meetings, where deterioration of a resident acted as the trigger.
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Nursing care home
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‘She was identified as a lady who … might not survive more than a few weeks. She ... she’s our most ill person.’ (Staff member 1, NCH A)
However, sometimes it appeared that the ACP had to be completed because it was one of the requirements needed for the NCH to obtain GSFCH accreditation. Decisions around when to undertake an ACP discussion varied between different individuals and families. An ACP conversation could be somewhat overwhelming if it was held too close to admission. Some families needed time to adjust to the change in situation. ‘You don’t really want to load too much of the protocol when you’re trying to just get to know the staff, get to know your surroundings ... she sort of left it with me as to when we would fill it out.’ (Family member 1)
However, one family felt relieved to have the ACP conversation on the day of their relative’s admission. They felt that it was an appropriate time to discuss the future. Many staff found it difficult to make the time to hold an ACP discussion. It became yet another job to complete. Some felt that time to sit and talk with residents and their families was undervalued by colleagues and management. ‘Where you spend time talking to relatives, then you’re not spending time nursing.’ (Staff member 1, NCH A)
All members of staff except one planned a meeting with the resident and family. However, staff, especially those with little experience in palliative care, could feel that approaching the subject of ACP was intimidating. There were also fears about upsetting those involved and sometimes this affected when and how staff approached people. ‘I think the only bit I would say is that not a lot of people like to hear about death you know ...’
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(Staff member 4, NCH B) A good relationship between the staff and the resident or family member led to an increase in the staffs’ confidence and the likelihood of them introducing the conversation. ‘… it’s one of building relationships because the more you talk to someone, the more you, you get used to them and you create that rapport to discuss with them.’ (Staff member 3, NCH B)
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Staff often said that they used the subject of the GSFCH or ‘another term’ to introduce why they would like to have an ACP discussion. This appeared to make it a less threatening subject and gave them a justifiable reason to be holding the conversation. The ACP document was often used as a prompt to guide the flow of the conversation, or given to family members to look at. However, it appeared that only the questions that were on the form were asked, and different ways of approaching the discussion were not considered. Clearly some nurses felt ill at ease and had not really considered the impact of their approach.
❛... ACP has become an important component of care provision in nursing care homes ...❜
‘I used the document to go through … “It’s all about making you comfortable in your la … last and final days here. Are there any special requests?” To which most of the time ... they normally say “No, I can’t think of anything.”’ (Staff member 6, NCH C)
One resident found the approach of the staff member disconcerting and felt that ACP was a goal that needed to be completed. ‘She, she came breezing in and she said she’d got something to fill in and ... “How, where do you want to die?” ... There was, whatever question was at the top, she just read the question out and wanted a tick or a cross ... Well, I felt it was a bit premature: I wasn’t ready for that ... It wasn’t introduced, it was badly, you know, banged into.’ (Resident 9)
In some cases prior assumptions influenced the approach taken. One member of staff described how a resident was very reserved and therefore she assumed that discussing his ACP would be challenging. She then stated that he had twice refused a percutaneous endoscopic gastrostomy tube and had indicated that he wanted to die. She did not recognise that this could be used as a way of opening up the conversation or that it was part of ACP. However, another member of staff identified cues during routine conversations that were then used as an opportunity to broach the subject of ACP. This staff member had been very nervous and lacked confidence with ACP but had asked her GSFCH facilitator to role-model an ACP conversation. ‘That’s where I got you know, the feel of talking to someone about advance care planning … I really valued that one. It was really, really very important to me ...That’s what actually even made me draw up the courage ... [to]
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start up that conversation with [the family member].’ (Staff member 3, NCH B)
She went on to explain that she would often relate to ACP on a personal level, thinking about her family and personal experiences. ‘I’m looking at myself and thinking, “Ah well, if that person was my mum or a close member of my family ...” So, when I’m talking to somebody, I’ll be thinking, “How will I react if someone had to talk to me about advance care planning on my mother? Or my dad?”’ (Staff member 3, NCH B)
Impact of and reactions to ACP discussions Prior to the formal implementation of ACP, conversations had often been held with residents and/or families about the end of life. However, they were generally informal and often held during a crisis period when the resident deteriorated. If someone deteriorated quickly or unexpectedly then the information was often missing. ‘It tended to be heading towards, sort of heading towards a sort of changing situation ... And of course ... if thing[s] moved quicker than you thought ... then you maybe would’ve missed that opportunity to have got information.’ (Staff Member 6, NCH C)
The ACP documentation had given staff a structure and staff found that conversations were now initiated earlier. Prior to the GSFCH programme much of the conversation was limited to burial/ cremation. However, staff felt that wider wishes of the resident were now known and documented. Although staff could be apprehensive about having ACP conversations in case it upset residents, there was little evidence of any upset from the interviews with the residents. The researcher thought that the majority of residents were comfortable talking about EoLC. ‘Well it didn’t worry me ‘cos I wa-, I, I thought to myself “Oh well, they wanna know things.” You know ... But er, they asked questions and I er, I just answered them.’ (Resident 6)
All residents spoke about how important the present time was to them, and quality of life was a significant factor. The ACP conversation provided an opportunity to sit and talk and gave the resident a chance to raise these topics. Some said that it was the first opportunity to explain how they felt and what was affecting them.
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‘One thing my, my Father did mention ... he felt as though his comments were, were listened to and they were, erm taken on board. Whereas in the past he’s found that, you know, they haven’t been.’ (Family member 1)
One resident reported severe pain and how this made her fear for the future. The nurse was able to address this. During the interviews with the researcher other residents had voiced their concerns around death. However, although some of these points had been acknowledged by staff in their interviews, others had not. Not all of the issues mentioned within the residents’ interviews had actually been noted on their ACP forms. When the subject of EoLC was initially introduced, some families found it surprising and unexpected. It was an issue that they had not anticipated was going to be introduced. However, families were generally very pragmatic. They were aware of their parent’s condition and that it could change. Previous experiences such as their loved one being admitted to hospital or seeing their health deteriorate had made them think about the future and what could happen. ‘I have to say because like most people it’s out of sight, out of mind I think. But yeah, because you are faced with it you got to face up to it, you focus on it.’ (Family member 4)
An ACP conversation gave the relatives a chance to speak about future care and to hear what their loved one would like to happen. It also gave an opportunity to plan for the future and for their views to be expressed. ‘I thought well at least they know now what we want and all that ... The fact that we’d discussed it and they knew what we wanted.’ (Family member 2)
It was acknowledged that fears of individual family members could influence whether staff should approach the resident and how. In one situation a nurse described how a son was very wary about holding an ACP discussion as he felt it would frighten his Mum. ‘Later on I found it was not only his mother he was worried about but even himself ... I realised though he was saying his mother was not ready, I think he was a little bit sceptical whether to talk about it or not.’ (Staff member 3, NCH B)
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❛Decisions around when to undertake an ACP discussion varied between different individuals and families ... one family felt relieved to have the ACP conversation on the day of their relative’s admission.❜
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When the member of staff spoke with this resident they found that she was very open and comfortable with the conversation. The place of death appeared to be a main focus of the ACP conversation and was what was most clearly remembered by the interviewees. ‘It’s her home, this is her home and this is where she wants to be, and this is where she wants to pass away.’ (Family member 5)
Not all residents had specified a preference; some felt that the staff and family members would make a decision on their behalf according to what was deemed to be the best option. They appeared to take life on a day-to-day basis and had not concerned themselves with the future. ‘I think I sort of, I’ve always taken things for granted, the, that this is going to happen. This happens, this happens, this happens. And you just go along with it.’ (Resident 1)
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Discussion This is one of the first papers to have used patient–family–staff triads to explore and understand experiences of ACP. Until recently there has been a culture of ‘striving to keep alive’, and it is not straightforward for care home staff to embrace discussions around ACP (Hockley, 2006). With the increasing recognition that patients should be at the centre of decision making, as highlighted by the Francis Report (2013), preferences and wishes are just the beginning of such a process. One aspect that this study highlighted was a lack of understanding and consistency as to what an ACP discussion was and what it aimed to achieve. The perception of staff varied from attaining information about funeral arrangements to care in the present and/or EoLC. This differing perception has been noted in other studies (Shanley et al, 2009). Staff’s uncertainty, perhaps not surprisingly, appeared to affect the understanding of residents and family members and the quality of their subsequent ACP conversation. However, this discussion had the benefit that it provided an opportunity for residents to talk. Interestingly, some chose to discuss issues of concern about their current care. It could be argued that residents have fewer concerns about future care, with priority being given to their current quality of life, and/or that they trusted the family to make decisions for them (Mathie et al, 2011). It is also possible that it is not as important to explore the future until current health-care needs or concerns have been resolved.
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A lack of knowledge and skills can block communication, especially around the subject of death and dying (O’Shea et al, 2008). In the present study, many staff were uncomfortable undertaking ACP conversations and were not ready to or did not feel they had the confidence to address emerging emotions. This too has been noted in other studies (Froggatt, 2009). In some cases euphemisms were used to introduce the concept of ACP. Staff reported this was a nonthreatening way of introducing the discussion, although there is a danger that the importance of ACP can be overlooked. For some staff the ACP discussions highlighted their own mortality, raising fears around the concept of death and dying (Holman and Hockley, 2010; Stewart et al, 2011). There was also the fear that they could trigger strong emotions. However, residents on the whole did not view their ACP conversations as distressing. Detering et al (2010) also reported this, as well as highlighting the importance of patients being involved in decision making. Jeong et al (2010) also found that residents were keen to discuss ACP but families were more reluctant. They suggested that a person finds it harder to make decisions for others, especially if there are concerns around litigation, misinterpretation of wishes, or impinging on independance. Holding ACP discussions with residents and families as a matter of principle should be encouraged (Detering et al, 2010) and might help families to be less apprehensive. This study reports similar findings to earlier studies (Froggatt et al, 2009; Addicott, 2011; Stewart et al, 2011; Silvester et al, 2012). Clearly, to move practice forward there needs to be a change in culture. This is a slow process and not always easy. One key factor identified in these earlier studies is the role of education (Jeong et al, 2010). Blackford et al (2007) recommended that the educational approach should be adapted according to the area of care and the staff members’ particular needs. They also stated that a variety of methods should be used to develop the skills needed, such as role play, case studies, and problem-solving scenarios. In the present study one occasion was discussed in which the GSFCH facilitator had role-modelled an ACP discussion. This helped to facilitate the learning process for the member of staff and supported change in practice. The study findings suggest this may be a way to move forward. Role-modelling has been recognised as an effective way of assisting nurses to learn skills (Donaldson and Carter, 2005). A study by Seymour et al (2010) among trained staff recommended the use of mentors and facilitators to help with understanding ACP and
❛Although staff could be apprehensive about having ACP conversations in case it upset residents, there was little evidence of any upset from the interviews with the residents.❜
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❛... one occasion was discussed in which the GSFCH facilitator had role-modelled an ACP discussion. This helped to facilitate the learning process for the member of staff ...❜
embedding it into the care home culture. Nolan et al (2008) pointed out that a way of reinforcing and maintaining the learning of skills is by allowing staff to practice them. Bryan (2013) stated that there is an ‘art’ to caring for those at the end of life. She described an educational initiative using role-modelling and reflection that has helped nurses in acute areas to develop skills in caring for these patients. It is also important to educate the wider community about ACP so that people are aware of it and its objectives (Horne et al, 2009; Shanley et al, 2009; Jeong et al, 2010). With increasing numbers of residents dying in care homes (DH, 2012) it is essential for EoLC to become part of the mandatory training. This would enable staff to address issues around the provision of EoLC and gain the skills to hold ACP conversations. Admission to a care home has been recognised as a trigger to initiate or review ACP discussions (National End of Life Care Programme, 2012). Staff in care homes are in a prime position to support residents and families with such discussions and decisions. However, if such conversations are to be pro actively undertaken then managers or clinical leads in NCHs have a responsibility to ensure not only that their staff have the education and skills to do so but also that the resulting documentation contains sufficient information to be helpful when future decisions need to be made.
Limitations The staff acted as gatekeepers in that it was they who initially informed residents about the study, and they may not have informed every eligible resident. ACP was a fairly new concept to the staff, and it is possible that this affected the results. The study did not address issues pertaining to those with limited capacity. The researcher and others involved in the study have no direct association with the care home, but they are involved with a GSFCH regional training centre.
Conclusion This study explored staff, resident, and family member experiences of participating in ACP discussions. It highlighted the importance of understanding the concept and the communication skills required when undertaking such discussions. Education can play a part in this, and the way that this could be supported with role-modelling should be further explored. I● JPN Declaration of interests This study was funded by The Wives Fellowship and St Christopher’s Hospice. The authors have no conflicts of interest to declare.
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Rutherford T (2012) Population aging: statistics. www. parliament.uk/briefing-papers/SN03228.pdf (accessed 28 October 2013) Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4): 334–40 Seymour J, Gott M, Bellamy G, Ahmedzai SH, Clark D (2004) Planning for the end of life: the views of older people about advance care statements. Soc Sci Med 59(1): 57–68 Seymour J, Almack K, Kennedy S (2010) Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliat Care 9: 4 Seymour J, Horne G (2011) Advance care planning for the end of life: an overview. In: Thomas K, Lobo B (2011) (eds) Advance Care Planning in End of Life Care. Oxford University Press, Oxford: 16–27 Shanley C, Whitmore E, Khoo A, Cartwright C, Walker A, Cumming RG (2009) Understanding how advance care planning is approached in the residential aged care setting: a continuum model of practice as an explanatory device. Australas J Ageing 28(4): 211–5
Shanley C, Whitmore E, Conforti D, Masso J, Jayasinghe S, Griffiths R (2011) Decisions about transferring nursing home residents to hospital: highlighting the roles of advance care planning and support from local hospital and community health services. J Clin Nurs 20(19–20): 2897–906 Silvester W, Fullam RS, Parslow RA et al (2012) Quality of advance care planning policy and practice in residential aged care facilities in Australia. BMJ Support Palliat Care [epub ahead of print] doi:10.1136/ bmjspcare-2012-000262 Stewart F, Goddard C, Schiff R, Hall S (2011) Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families. Age Ageing 40(3): 330–5 Storey L, Sherwen L (2013) How to use Advance Care Planning in a care home. Nurs Older People 25(2): 14–8 Teno JM, Branco KJ, Mor V et al (1997) Changes in advance care planning in nursing homes before and after the patient Self-Determination Act: report of a 10-state survey. J Am Geriatr Soc 45(5): 939–44
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Advance care planning in care homes: the experience of staff, residents, and family members
Abstract
Background: In the UK, implementation of the Gold Standards Framework in Care Homes (GSFCH) programme is being promoted to develop the quality of end-of-life care for frail older people living and dying in care homes. Advance care planning (ACP) discussions are an integral part of this. This study explored experiences of initiating and completing these discussions in homes undertaking the GSFCH. Methods: A qualitative descriptive study was carried out in three nursing care homes implementing the GSFCH programme. Following an ACP discussion, 28 semi-structured interviews were conducted with the resident, a family member, and the staff member who undertook the ACP. Content analysis was then conducted. Findings: Three main categories of findings emerged: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions. Staff understanding of ACP varied, affecting the depth of their discussions. Documentation was either a useful prompt or limited the discussion, blocking opportunistic cues and encouraging a ‘tick-box’ exercise. Residents were open to ACP, although the way it was introduced could affect the results. Families were comforted that the resident’s future care had been considered. Education was identified as being important, and role modelling ACP enabled a member of staff to develop their skills and confidence in it. Conclusions: Care home staff need to develop the knowledge, skills, and confidence to engage in discussions around end-of-life care. The assistance of a trained facilitator who role-models this process should be explored. Key words: Advance care planning l ACP l Care homes l Older people l Elderly l Gold Standards Framework
Louisa Stone is Research Assistant/Care Home Facilitator, Care Home Project Team; Julie Kinley is Research Nurse, Care Home Project Team; Jo Hockley is Nurse Consultant for Care Homes, Care Home Project Team, St Christopher’s Hospice, 51–59 Lawrie Park Road, Sydenham, London, SE26 6DZ Correspondence to: Louisa Stone l.stone@stchristophers. org.uk
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A
dvance care planning (ACP) is a voluntary process of discussion between an individual, their family or carer if available, and their care providers. It is an opportunity to look to the future and discuss and document a person’s views about their care, particularly for those with life-limiting, progressive illness. This process should consist of ongoing discussions and be reviewed regularly (Seymour et al, 2004). Documentation may take the form of an advance statement of wishes and preferences, an advance decision to refuse treatment (a legal document refusing specific treatment), and/or a surrogate
decision maker in the appointment of a Lasting Power of Attorney for Health and Welfare. These documents are then available to guide care if the individual loses the ability to make decisions or communicate their wishes (Royal College of Physicians et al, 2009). Advance care planning is not a new concept. In 1991 the US Patient Self-Determination Act advocated the use of advance directives (Teno et al, 1997). This notion of looking to the future and documenting wishes has been further adopted internationally and across all care settings. Several initiatives have encouraged this, and various tools help to support documentation, including Preferred Priorities for Care (Horne et al, 2009) and Respecting Patient Choices (Blackford et al, 2007). There are also frameworks, such as the Gold Standards Framework in Care Homes (GSFCH) (National Gold Standards Framework Centre, 2012), which use a structured approach to enable care homes to deliver quality end-of-life care (EoLC). The GSFCH is a 2-year programme, consisting of four workshops over the first year followed by a year when the care home further embeds the learning. As a result of the National End of Life Care Strategy in England (Department of Health (DH), 2008) and the promotion of various EoLC tools, ACP has become an important component of care provision in nursing care homes (NCHs)—facilities that provide continual nursing care for residents. In England, 19% of deaths occur in a care home (DH, 2012). With the projection of an ageing global population (Jacobsen et al, 2011; Rutherford, 2012) it is likely that the number of people living and dying in a care home will increase. People are also being admitted to care homes in a frailer state (Froggatt et al, 2008), with the majority dying within a year of admission (Kinley et al, 2013). Advance care planning is reported to decrease inappropriate hospital admissions of frail elderly residents with palliative care needs (Beynon et al, 2011; Shanley et al, 2011). However, the quality
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Louisa Stone, Julie Kinley, Jo Hockley
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and content of ACP varies (Silvester et al, 2012). Seymour and Horne (2011) pointed out that ACP is about more than just future medical care, also encompassing the goals and values personal to the person, whether social, spiritual, and/or psychological. This was echoed by Storey and Sherwen (2013). ACP is not a simple process. Several studies have explored experiences of ACP with specific groups of participants in care homes. Froggatt et al (2009) found that managers identified factors such as staff confidence, time, family dynamics, and willingness or ability to talk as affecting ACP discussions. Seymour et al (2004) used focus groups to discuss the views of older people, and issues such as talking about death and dying, alleviating burden on families, and euthanasia were highlighted.
Aim This study aimed to explore the experience of staff, residents, and families having ACP discussions in an NCH context. Historically these settings have had a rehabilitative culture.
Methods
Research design
A qualitative descriptive interview design was adopted (Sandelowski, 2000).
Setting and participants NCHs undertaking Phase 5 of the GSFCH programme across one Primary Care Trust in south-east England were invited to take part. Care homes that only provided care for residents with dementia or learning disability were excluded, as were residents with a diagnosis of dementia. Three NCHs were invited and all three participated. These homes had 54–58 beds. One was privately owned, one charity-run, and the other part of a cooperative. All used the GSFCH Looking Ahead document (National Gold Standards Framework Centre, 2011). The potential study participants included all residents and family members as well as the care home staff who had led their discussion. It was intended that up to 15 resident– family–staff triads would be recruited.
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Recruitment and data collection A visit to each NCH that met the study criteria was arranged through the local GSFCH facilitator. This enabled the researcher to meet each nurse manager and gain permission to discuss the study with the care home staff. Following this initial meeting a teaching session on ACP was undertaken for the NCH staff. This was given by an experienced clinical nurse specialist in palliative care at the NCH and ensured that all staff had knowledge
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Box 1. Resident interview guide I would like to look at what led to your decision to undertake advance care planning (ACP) with the care home staff: ●
Can you share with me what you understand about ACP?
●
Can you tell me about how you first heard about ACP?
●
Can you explain why undertaking ACP was important for you?
Thinking about the day that you met to undertake ACP: ● Who
took part in your ACP conversation?
Timing of ACP: ●
Do you feel this was the right time to have an ACP conversation?
●
Can you explain what made this the right time for you to have such a conversation?
Process: ●
How did you feel about the ACP conversation?
● Who
led the ACP conversation, how was this decision made, was it a good decision and why?
● Were
there any subjects that you found more difficult to discuss?
●
Did you have an opportunity to discuss everything that was important to you?
●
Does the ACP you made contain everything that is important to you?
● Would ● Was
you be willing to share with me what you chose to put in your ACP?
documentation completed during this conversation?
Thinking back today about your ACP conversation: ●
How do you feel now about your ACP conversation?
● Was
a plan made to review your ACP?
of what an ACP conversation was and how it could best be undertaken. Information sheets and consent forms were given to each staff member. Following subsequent ACP conversations, the staff member undertaking the discussion invited the resident and family members (if present) to take part in the study and contacted JK. The resident and family member were then approached by JK, who explained the study, giving an information sheet and consent form. If the resident and family member agreed, an interview was arranged within a few days. Semi-structured interviews were undertaken. The interview schedule (Box 1) was reviewed by members of the Care Home Project Team at St Christopher’s Hospice, who were used to undertaking ACP discussions in a care home setting. It was not piloted. All interviews were undertaken by JK in the NCH. Residents were given the opportunity to be interviewed alone or with their family member present. They were also asked whether they would be willing for the research team to have a photocopy of their ACP. Individual interviews were held with staff. All interviews were digitally recorded and transcribed verbatim.
Analysis The transcriptions were stored using NVivo 8 software. Content analysis (Polit and Beck, 2006)
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Table 1. Interview triads Residents Staff (n)
Diagnosis
A
2 (one interviewed three times, one interviewed twice)
5
Cancer of the oesophagus and breast (1), cerebrovascular accident (1), muscular dystrophy (1), unknown (2)
B
2 (both interviewed twice)
4
Heart failure (2), ischaemic heart disease, peripheral vascular disease (1), diabetes (2)
3
C
2 (both interviewed once)
2
Heart failure (1), rheumatoid arthritis (1)
2
1
was initially undertaken with each group of transcripts (the collective staff transcripts, resident transcripts, and family member transcripts). JH, JK, and LS independently coded and compared the first two transcripts in each of the three groups. Identified themes and categories were discussed and agreed. LS undertook the remaining analysis. Following analysis of the separate groups it became apparent that similar main categories had emerged. The resident, family, and staff groups were therefore merged to form a more coherent whole.
thoughts on EoLC, which could include specific medical treatment. These documents would be used to guide decisions if a person could no longer communicate. Others felt it applied to everyday care and one staff member only discussed the resident’s funeral plan.
Ethics
Residents’ and families’ understanding of the term also varied. One resident associated ACP with EoLC, appearing to think that if someone was having such a conversation it implied that they were going to die soon.
Ethical approval was granted by Bromley Local Research Ethics Committee in 2009 (reference number 08/H0805/76). Confidentiality and anonymity were ensured throughout the study. Prior to analysis all data was re-coded.
Findings Twenty eight interviews were undertaken with eleven residents, six family members, and six staff (five registered general nurses and one health-care assistant). Care staff were involved in more than one discussion. Interviews were held within a week of the original ACP discussion. There were five complete staff–resident–family member triads (Table 1). Only one of the staff members reported having previous experience and training around palliative care and ACP. Although all four workshops of the GSFCH programme had been completed, staff had only recently begun to initiate ACP conversations. Three main categories of findings emerged from the analysis: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions.
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Family members (n)
(n)
‘… you get to know the people more than the ordinary plan. Because you have to plan the future—the present and the future ... you get all the views and all the expectations from them, I would say.’ (Staff member 2, NCH A)
‘Well advanced care means near to death, doesn’t it?’ (Resident 9)
Others appeared to associate it with general everyday care given by the staff. ‘Well, I’m not quite sure ... Continues all the time, yes, in my care, sort of thing ... And I can ask questions, you know, where I like and I get sensible answers for them.’ (Resident 3)
The majority of the family members appeared to have a clearer understanding of the purpose of ACP. They took on board how it could be used to help look at future care and to take into consideration the wishes of their loved one. ‘Well, to me it’s what happens to them in the future ... and er, what you need, their needs are for later you know.’ (Family member 5)
Understanding ACP
Undertaking ACP discussions
When asked to define the term ACP, descriptions varied between staff members, with no clear concept of what it was. A few staff understood the importance of documenting residents’ views and
The decision to undertake an ACP conversation was usually initiated through the monthly GSFCH meetings, where deterioration of a resident acted as the trigger.
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Nursing care home
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‘She was identified as a lady who … might not survive more than a few weeks. She ... she’s our most ill person.’ (Staff member 1, NCH A)
However, sometimes it appeared that the ACP had to be completed because it was one of the requirements needed for the NCH to obtain GSFCH accreditation. Decisions around when to undertake an ACP discussion varied between different individuals and families. An ACP conversation could be somewhat overwhelming if it was held too close to admission. Some families needed time to adjust to the change in situation. ‘You don’t really want to load too much of the protocol when you’re trying to just get to know the staff, get to know your surroundings ... she sort of left it with me as to when we would fill it out.’ (Family member 1)
However, one family felt relieved to have the ACP conversation on the day of their relative’s admission. They felt that it was an appropriate time to discuss the future. Many staff found it difficult to make the time to hold an ACP discussion. It became yet another job to complete. Some felt that time to sit and talk with residents and their families was undervalued by colleagues and management. ‘Where you spend time talking to relatives, then you’re not spending time nursing.’ (Staff member 1, NCH A)
All members of staff except one planned a meeting with the resident and family. However, staff, especially those with little experience in palliative care, could feel that approaching the subject of ACP was intimidating. There were also fears about upsetting those involved and sometimes this affected when and how staff approached people. ‘I think the only bit I would say is that not a lot of people like to hear about death you know ...’
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(Staff member 4, NCH B) A good relationship between the staff and the resident or family member led to an increase in the staffs’ confidence and the likelihood of them introducing the conversation. ‘… it’s one of building relationships because the more you talk to someone, the more you, you get used to them and you create that rapport to discuss with them.’ (Staff member 3, NCH B)
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Staff often said that they used the subject of the GSFCH or ‘another term’ to introduce why they would like to have an ACP discussion. This appeared to make it a less threatening subject and gave them a justifiable reason to be holding the conversation. The ACP document was often used as a prompt to guide the flow of the conversation, or given to family members to look at. However, it appeared that only the questions that were on the form were asked, and different ways of approaching the discussion were not considered. Clearly some nurses felt ill at ease and had not really considered the impact of their approach.
❛... ACP has become an important component of care provision in nursing care homes ...❜
‘I used the document to go through … “It’s all about making you comfortable in your la … last and final days here. Are there any special requests?” To which most of the time ... they normally say “No, I can’t think of anything.”’ (Staff member 6, NCH C)
One resident found the approach of the staff member disconcerting and felt that ACP was a goal that needed to be completed. ‘She, she came breezing in and she said she’d got something to fill in and ... “How, where do you want to die?” ... There was, whatever question was at the top, she just read the question out and wanted a tick or a cross ... Well, I felt it was a bit premature: I wasn’t ready for that ... It wasn’t introduced, it was badly, you know, banged into.’ (Resident 9)
In some cases prior assumptions influenced the approach taken. One member of staff described how a resident was very reserved and therefore she assumed that discussing his ACP would be challenging. She then stated that he had twice refused a percutaneous endoscopic gastrostomy tube and had indicated that he wanted to die. She did not recognise that this could be used as a way of opening up the conversation or that it was part of ACP. However, another member of staff identified cues during routine conversations that were then used as an opportunity to broach the subject of ACP. This staff member had been very nervous and lacked confidence with ACP but had asked her GSFCH facilitator to role-model an ACP conversation. ‘That’s where I got you know, the feel of talking to someone about advance care planning … I really valued that one. It was really, really very important to me ...That’s what actually even made me draw up the courage ... [to]
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start up that conversation with [the family member].’ (Staff member 3, NCH B)
She went on to explain that she would often relate to ACP on a personal level, thinking about her family and personal experiences. ‘I’m looking at myself and thinking, “Ah well, if that person was my mum or a close member of my family ...” So, when I’m talking to somebody, I’ll be thinking, “How will I react if someone had to talk to me about advance care planning on my mother? Or my dad?”’ (Staff member 3, NCH B)
Impact of and reactions to ACP discussions Prior to the formal implementation of ACP, conversations had often been held with residents and/or families about the end of life. However, they were generally informal and often held during a crisis period when the resident deteriorated. If someone deteriorated quickly or unexpectedly then the information was often missing. ‘It tended to be heading towards, sort of heading towards a sort of changing situation ... And of course ... if thing[s] moved quicker than you thought ... then you maybe would’ve missed that opportunity to have got information.’ (Staff Member 6, NCH C)
The ACP documentation had given staff a structure and staff found that conversations were now initiated earlier. Prior to the GSFCH programme much of the conversation was limited to burial/ cremation. However, staff felt that wider wishes of the resident were now known and documented. Although staff could be apprehensive about having ACP conversations in case it upset residents, there was little evidence of any upset from the interviews with the residents. The researcher thought that the majority of residents were comfortable talking about EoLC. ‘Well it didn’t worry me ‘cos I wa-, I, I thought to myself “Oh well, they wanna know things.” You know ... But er, they asked questions and I er, I just answered them.’ (Resident 6)
All residents spoke about how important the present time was to them, and quality of life was a significant factor. The ACP conversation provided an opportunity to sit and talk and gave the resident a chance to raise these topics. Some said that it was the first opportunity to explain how they felt and what was affecting them.
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‘One thing my, my Father did mention ... he felt as though his comments were, were listened to and they were, erm taken on board. Whereas in the past he’s found that, you know, they haven’t been.’ (Family member 1)
One resident reported severe pain and how this made her fear for the future. The nurse was able to address this. During the interviews with the researcher other residents had voiced their concerns around death. However, although some of these points had been acknowledged by staff in their interviews, others had not. Not all of the issues mentioned within the residents’ interviews had actually been noted on their ACP forms. When the subject of EoLC was initially introduced, some families found it surprising and unexpected. It was an issue that they had not anticipated was going to be introduced. However, families were generally very pragmatic. They were aware of their parent’s condition and that it could change. Previous experiences such as their loved one being admitted to hospital or seeing their health deteriorate had made them think about the future and what could happen. ‘I have to say because like most people it’s out of sight, out of mind I think. But yeah, because you are faced with it you got to face up to it, you focus on it.’ (Family member 4)
An ACP conversation gave the relatives a chance to speak about future care and to hear what their loved one would like to happen. It also gave an opportunity to plan for the future and for their views to be expressed. ‘I thought well at least they know now what we want and all that ... The fact that we’d discussed it and they knew what we wanted.’ (Family member 2)
It was acknowledged that fears of individual family members could influence whether staff should approach the resident and how. In one situation a nurse described how a son was very wary about holding an ACP discussion as he felt it would frighten his Mum. ‘Later on I found it was not only his mother he was worried about but even himself ... I realised though he was saying his mother was not ready, I think he was a little bit sceptical whether to talk about it or not.’ (Staff member 3, NCH B)
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❛Decisions around when to undertake an ACP discussion varied between different individuals and families ... one family felt relieved to have the ACP conversation on the day of their relative’s admission.❜
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When the member of staff spoke with this resident they found that she was very open and comfortable with the conversation. The place of death appeared to be a main focus of the ACP conversation and was what was most clearly remembered by the interviewees. ‘It’s her home, this is her home and this is where she wants to be, and this is where she wants to pass away.’ (Family member 5)
Not all residents had specified a preference; some felt that the staff and family members would make a decision on their behalf according to what was deemed to be the best option. They appeared to take life on a day-to-day basis and had not concerned themselves with the future. ‘I think I sort of, I’ve always taken things for granted, the, that this is going to happen. This happens, this happens, this happens. And you just go along with it.’ (Resident 1)
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Discussion This is one of the first papers to have used patient–family–staff triads to explore and understand experiences of ACP. Until recently there has been a culture of ‘striving to keep alive’, and it is not straightforward for care home staff to embrace discussions around ACP (Hockley, 2006). With the increasing recognition that patients should be at the centre of decision making, as highlighted by the Francis Report (2013), preferences and wishes are just the beginning of such a process. One aspect that this study highlighted was a lack of understanding and consistency as to what an ACP discussion was and what it aimed to achieve. The perception of staff varied from attaining information about funeral arrangements to care in the present and/or EoLC. This differing perception has been noted in other studies (Shanley et al, 2009). Staff’s uncertainty, perhaps not surprisingly, appeared to affect the understanding of residents and family members and the quality of their subsequent ACP conversation. However, this discussion had the benefit that it provided an opportunity for residents to talk. Interestingly, some chose to discuss issues of concern about their current care. It could be argued that residents have fewer concerns about future care, with priority being given to their current quality of life, and/or that they trusted the family to make decisions for them (Mathie et al, 2011). It is also possible that it is not as important to explore the future until current health-care needs or concerns have been resolved.
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A lack of knowledge and skills can block communication, especially around the subject of death and dying (O’Shea et al, 2008). In the present study, many staff were uncomfortable undertaking ACP conversations and were not ready to or did not feel they had the confidence to address emerging emotions. This too has been noted in other studies (Froggatt, 2009). In some cases euphemisms were used to introduce the concept of ACP. Staff reported this was a nonthreatening way of introducing the discussion, although there is a danger that the importance of ACP can be overlooked. For some staff the ACP discussions highlighted their own mortality, raising fears around the concept of death and dying (Holman and Hockley, 2010; Stewart et al, 2011). There was also the fear that they could trigger strong emotions. However, residents on the whole did not view their ACP conversations as distressing. Detering et al (2010) also reported this, as well as highlighting the importance of patients being involved in decision making. Jeong et al (2010) also found that residents were keen to discuss ACP but families were more reluctant. They suggested that a person finds it harder to make decisions for others, especially if there are concerns around litigation, misinterpretation of wishes, or impinging on independance. Holding ACP discussions with residents and families as a matter of principle should be encouraged (Detering et al, 2010) and might help families to be less apprehensive. This study reports similar findings to earlier studies (Froggatt et al, 2009; Addicott, 2011; Stewart et al, 2011; Silvester et al, 2012). Clearly, to move practice forward there needs to be a change in culture. This is a slow process and not always easy. One key factor identified in these earlier studies is the role of education (Jeong et al, 2010). Blackford et al (2007) recommended that the educational approach should be adapted according to the area of care and the staff members’ particular needs. They also stated that a variety of methods should be used to develop the skills needed, such as role play, case studies, and problem-solving scenarios. In the present study one occasion was discussed in which the GSFCH facilitator had role-modelled an ACP discussion. This helped to facilitate the learning process for the member of staff and supported change in practice. The study findings suggest this may be a way to move forward. Role-modelling has been recognised as an effective way of assisting nurses to learn skills (Donaldson and Carter, 2005). A study by Seymour et al (2010) among trained staff recommended the use of mentors and facilitators to help with understanding ACP and
❛Although staff could be apprehensive about having ACP conversations in case it upset residents, there was little evidence of any upset from the interviews with the residents.❜
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❛... one occasion was discussed in which the GSFCH facilitator had role-modelled an ACP discussion. This helped to facilitate the learning process for the member of staff ...❜
embedding it into the care home culture. Nolan et al (2008) pointed out that a way of reinforcing and maintaining the learning of skills is by allowing staff to practice them. Bryan (2013) stated that there is an ‘art’ to caring for those at the end of life. She described an educational initiative using role-modelling and reflection that has helped nurses in acute areas to develop skills in caring for these patients. It is also important to educate the wider community about ACP so that people are aware of it and its objectives (Horne et al, 2009; Shanley et al, 2009; Jeong et al, 2010). With increasing numbers of residents dying in care homes (DH, 2012) it is essential for EoLC to become part of the mandatory training. This would enable staff to address issues around the provision of EoLC and gain the skills to hold ACP conversations. Admission to a care home has been recognised as a trigger to initiate or review ACP discussions (National End of Life Care Programme, 2012). Staff in care homes are in a prime position to support residents and families with such discussions and decisions. However, if such conversations are to be pro actively undertaken then managers or clinical leads in NCHs have a responsibility to ensure not only that their staff have the education and skills to do so but also that the resulting documentation contains sufficient information to be helpful when future decisions need to be made.
Limitations The staff acted as gatekeepers in that it was they who initially informed residents about the study, and they may not have informed every eligible resident. ACP was a fairly new concept to the staff, and it is possible that this affected the results. The study did not address issues pertaining to those with limited capacity. The researcher and others involved in the study have no direct association with the care home, but they are involved with a GSFCH regional training centre.
Conclusion This study explored staff, resident, and family member experiences of participating in ACP discussions. It highlighted the importance of understanding the concept and the communication skills required when undertaking such discussions. Education can play a part in this, and the way that this could be supported with role-modelling should be further explored. I● JPN Declaration of interests This study was funded by The Wives Fellowship and St Christopher’s Hospice. The authors have no conflicts of interest to declare.
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