A qualitative study: Professionals’ experiences of advance care planning in dementia and palliative care,‘ a good idea in theory but … ’

Abstract

Background:

Advance care planning comprises discussions about an individual’s wishes for future care while they have capacity.

Aim:

To explore professionals’ experiences on the implementation of advance care planning in two areas of clinical care, dementia and palliative care.

Design:

Qualitative study, focus groups and individual interviews.

Setting:

North East of England.

Sample:

Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organisations and the legal sector.

Results:

Fourteen focus groups and 18 interviews were held with 95 participants. While professionals agreed that advance care planning was a good idea in theory, implementation in practice presented them with significant challenges. The majority expressed uncertainty over the general value of advance care planning, whether current service provision could meet patient wishes, their individual roles and responsibilities and which aspects of advance care planning were legally binding; the array of different advance care planning forms and documentation available added to the confusion. In dementia care, the timing of when to initiate advance care planning discussions was an added challenge.

Conclusions:

This study has identified the professional, organisational and legal factors that influence advance care planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of advance care planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of advance care planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.

Keywords

Advance care planning advance directive dementia palliative care terminal care qualitative research

Introduction

Advance care planning (ACP) comprises discussions about an individual’s wishes for future care while they have capacity and these may be formally documented (see Box 1). ACP originated in the United States, initially via a living will,¹ but did not develop in the United Kingdom² until the mid-1980s. In the United Kingdom, a National End of Life Care Programme highlighted the importance of ACP in promoting patient preferences.³ Evidence to date⁴ suggests that ACP for older people, including those with cognitive impairment,^5,6 can reduce inappropriate hospitalisation and increase palliative interventions.^{6

–10} Current UK guidance recommends ACP be offered to all patients with a palliative, life-limiting illness.^4,11

In terms of ACP implementation, multi-component interventions appear most effective.^{12

–15} In the United Kingdom, some professionals have received training on ACP,^3,4,16 but seem to find ACP difficult to integrate into practice;^{17

–20} implementation in care homes^{18,20
–22} and appropriate dissemination of ACP documents²³ bring additional challenges. In the United Kingdom, research exploring ACP implementation has been limited with studies focusing on individual professional groups.^{18

–22,24,25} The aim of this study was to examine critically the views and experiences of a wide range of professionals, clinical and non-clinical, on ACP in two clinical areas, dementia and palliative care, where professionals may be more likely to introduce it due to a future loss of mental capacity and the presence of a terminal illness.

Methods

This study was conducted in the North East of England; ethical approval was secured from Newcastle and North Tyneside 1 Research Ethics Committee (REF 09/H0906/5) and research governance granted by participating National Health Service (NHS) trusts.

We chose to focus on two clinical areas: palliative care, where patients will have an untreatable, life-limiting illness, and dementia, where patients will inevitably lose mental capacity. Purposive sampling was used to recruit participants from palliative care, primary care, dementia care services, social services, the voluntary sector and legal professionals. The initial approach to potential participants was from the project team, either via an introductory letter and information sheet explaining the research and its objectives, or for clinical professionals, a direct contact approach (face to face/telephone) from the three clinical study site leads (A.C., J.H., L.R.).

Focus groups facilitated by experienced qualitative researchers (C.D., L.R., C.B.) and lasting between 60 and 90 min were held at participants’ preferred venue, usually their place of work, and organised by professional background; however, some groups were multidisciplinary. Where professionals were unable to attend, individual semi-structured interviews were offered, conducted by C.D. and C.B. The semi-structured topic guide covered key issues, identified through a systematic literature review,¹⁰ including participants’ understanding and experiences of ACP, facilitators/barriers to implementation and what training they had received, if any. All focus groups and interviews were digitally recorded and transcribed verbatim; post transcribing verbal and/or written feedback was provided to participants to check interpretation.

The principle of constant comparison guided an iterative process of data collection and analysis.²⁶ Transcripts were checked and entered into NVivo (version 9) that facilitated data management; a thematic analysis approach²⁷ was used to analyse the data. The analysis process began with the research team (C.B., C.D., C.E., L.R.) familiarising themselves with transcripts by close, detailed reading. Each team member then reread transcripts and undertook a preliminary analysis of several transcripts at a very descriptive level. An initial coding framework was developed in ‘data workshops’. Two researchers (C.B., C.D.) focused upon the key labels to emerge from the data and examined all the transcripts in relation to the central labels of certainty and uncertainty; the whole team then discussed the coding process and contributed to the conceptualisation and iterative data analysis. Post-interview field notes and notes from the data workshops enhanced this reflective process.

Results

Ninety-five participants took part in either a focus group (n = 14) or an individual interview (n = 18) (see Table 1). Data were collected between September 2009 and January 2011. There was considerable ‘uncertainty’ within many professional groups around three key areas: the value and usefulness of ACP; the definition, components and legal status of ACP and the practicalities of implementation. In general, palliative care specialists, community nurses and solicitors were most confident and had the most experience, whereas family physicians, known as general practitioners (GPs) in the United Kingdom, and ambulance staff expressed uncertainty about many aspects of ACP implementation. There was also considerable confusion about the meaning of the different ACP components, that is, ADRTs and LPAs.

Table 1.

Participants who took part in a focus group or interview, by professional group.

	Number of interviews	Number of focus groups	Total number of participants
Specialist palliative care professionals (consultants, clinical nurse specialists)	1	1	5
Family physicians/general practitioners	4	1	10
Community nurses and AHPs	5	3	17
Old-age psychiatrists	1	1	10
Mental health nurses and AHPs	2	4	22
Social workers	0	1	6
Ambulance service	0	2	15
Solicitors	3	0	3
Voluntary sector	2	1	7
Total	18	14	95

AHPs: allied health professionals.

Value and usefulness of ACP: ‘A really good idea but …’

In general, participants discussed ACP as being a ‘good idea’ in theory but problematic to enact:

… I think the whole concept of Advance Care Planning is a really good idea but … it’s one thing having a good idea, it’s another thing actually putting it into practice. (R70, FG01, Macmillan palliative clinical nurse specialist)

It’s not an easy topic to approach. And yes, it’s very distressing but I think a lot of people feel better once they open up and once they start to talk about things. And they raise any fears that they may have. So it’s an ideal opportunity. (R59, Community nursing sister)

Box 1. Outcomes of ACP discussions: international and national terminology.

Statement of wishes and preferences. Documents an individual’s wishes and preferences for future care but is not legally binding. In England and Wales, this is known as an advance statement.

An advance directive for refusal of treatment (originally known as a ‘living will’). This comprises a statement of an individual’s refusal to receive specific medical treatment in a predefined potential future situation. It is legally binding and comes into effect when a person loses mental capacity. In England and Wales, this is known as an advance decision to refuse treatment (ADRT).

A proxy decision-maker or power of attorney (POA). This is a formal arrangement, undertaken by deed, whereby the person (‘the donor’) nominates another (the ‘donee’ or ‘attorney’) to act in his or her name or on his or her behalf. In England and Wales, a new type of POA, a lasting power of attorney (LPA), allows the donor to confer authority on the attorney to make decisions, including decisions in circumstances where the donor no longer has capacity. LPAs can be made in relation to two separate aspects: (a) the donor’s health and personal welfare and (b) the donor’s property and affairs.

Although some participants were positive about implementing ACP, most were not convinced of its value and usefulness to patients or health-care providers and expressed concerns about their ability to actually deliver patient choice. For dementia specialists, the value of ACP was questioned since it was seen as duplicating existing approaches, for example, person-centred care and the concept of best interest decision-making.⁵

Professionals expressed concerns that as ACP became a formal requirement in palliative care, it could become merely a tick box exercise, rather than being tailored to individual patient needs. The possible inclusion of ACP as a ‘target’, or quality indicator of professional care, against which service provision is measured, was seen as something that could potentially impact negatively on the ACP process.

One of the huge worries is that advance care planning is going to be used as a target that in nursing homes all residents … and/or people with dementia will have an advance care plan before they lose capacity … I think if we start doing that that would make the whole thing much worse … (R97, Palliative care consultant)

Delivering patient choice and achieving desired outcomes

Some professionals reported feeling that they had let patients down when the care system had been unable to provide what the patient had requested. While there were problems due to lack of resources in all the services, this was particularly so in dementia services.

Who would ever want to go to an ESMI [Elderly and Severely Mentally Infirm] care unit look at that and think this is where I want to live my days out. No way. But the reality is where else can that person be managed? They can’t be. So somebody might well end up seeing their days out somewhere like that and it wouldn’t be the family’s first choice, it wouldn’t be my first choice, but there’s no other place for that person to go. (R33, FG04, Social worker)

Adhering to patients’ expressed wishes was particularly difficult for ambulance staff, with tensions arising between their professional training (i.e. a focus on sustaining life through resuscitation) and ADRTs, which could include Do Not Resuscitate/Do Not Hospitalise orders. Ambulance staff also described, in emergency situations, having to manage tensions between patient wishes and family preferences. Another professional concern was that patient wishes might change over time as illnesses and circumstances change.

Not so long ago with a patient we ended up taking the patient to hospital even though the care plan stated no removal to hospital, the daughter overruled it and at 4 or 5 o’clock in the morning I’m not there to argue, I’ll just do what I want to do for the patient and that’s what exactly happened. However, later that day the doctor in the hospital who got her to sign this form rang the ambulance service to register a complaint. But what do we do? We are stuck. (R163, FG13, Team leader, ambulance service)

Defining ACP and legal issues: ‘It all becomes a bit of a blur …’

Many participants expressed confusion between the boundaries, and legal status of, the core components of ACP (ADRTs, advance statements and LPAs). In general, professionals were most certain about LPAs with confusion greatest around ADRTs; this confusion was aggravated by professionals’ lack of knowledge of the Mental Capacity Act (MCA), which they considered fundamental to carrying out ACP. When discussing ADRTs, many participants used terms such as ‘living wills’, ‘advance directives’ and ‘Do not attempt resuscitation’ (DNAR) orders interchangeably.

I get confused about the terminology about advance care and advance directive and that and one’s legally binding and one isn’t and it all becomes a bit of a blur. (R114, FG09, GP)

Professionals were also worried about potential litigation if they acted in a way that could be regarded as contrary to the wishes expressed in ACP documents. Knowledge of the legal status of ADRTs was variable, with palliative care specialists and solicitors feeling the most confident. Many professionals had experience of ADRTs not being implemented because they were not considered to be ‘valid and applicable’, and many were uncertain how to ensure that such documents were valid and applicable.

It was a document that had been written about three years ago of someone who had motor neurone who was having a fit … staff were saying we don’t want any investigations, no look we’ve got this; but actually when you looked at it, it was so non-specific or it wasn’t legally binding in any stretch of the imagination … it wasn’t worth the paper it was written on. (R197, GP)

In marked contrast to other components of ACP, most health and social care participants reported few difficulties in raising the issue of LPA for property and affairs. Where someone had a condition that was likely to affect their capacity to make decisions, participants reported their role as being one of the ‘signposting’ to specialist legal advice, usually by the provision of a list of local solicitors.

… we’ll mention it [LPA], we’ll give them information leaflets and then at the end of the day it’s the solicitor who actually has to do it. (R9, FG03, Specialist registrar in old age psychiatry)

However, in contrast to LPA for property and affairs, the LPA for health and welfare was not something most professionals routinely discussed with patients. Knowledge of the MCA was seen to underpin ACP, participants’ familiarity with the Act varied, with palliative care specialists, solicitors and old age psychiatrists feeling most confidence. Generally, the issue of assessing a person’s mental capacity to discuss ACP was a concern, with no single professional group considering assessment of capacity as their responsibility. While old age psychiatrists felt competent at assessing capacity, they suggested that GPs might be in a better position owing to their on-going relationships with their patients. While professionals acknowledged that they routinely made judgements about capacity in their daily work, many had reservations about making a formal assessment that would influence the implementation of a legally binding document.

We’re always making some kind of assessment of capacity whenever you do something or making a decision with a patient. When you’re formally asked to do it just scares the living daylights out of all GPs. And it’s just the legal involvement. (R110, FG09, GP)

Practicalities of implementing ACP: ‘Nobody knows what to do …

Professionals expressed uncertainty in relation to three aspects of implementing ACP in practice: who should be responsible for ACP, what documentation to use and when to instigate ACP; the financial costs of drawing up a LPA was a further barrier.

Roles and responsibilities in ACP

While there was a general consensus that professionals should be involved in ACP, there was some debate about which professional group should take overall responsibility.

Nobody knows what to do or whose role it is to do it, how they’re going to do it and I think it’s just something that’s overlooked … (R231, FG11, Voluntary sector professional)

With the exception of solicitors and palliative care specialists, all the participants reported that they felt they lacked the skills to implement ACP, regardless of whether or not they had received appropriate training. In general, palliative care specialists, some GPs and community nurses were most likely to consider ACP part of their professional responsibility; others felt it was outside their remit due to a lack of time, resources and training.

… when looking at Advance Care Planning the commissioners have to make a decision about whether this is our business because within psychiatry of old age service I don’t think it is our business. I certainly think it’s somebody’s business … (R17, FG04, Social worker)

Some dementia care professionals believed ACP to be part of a new specialist role, dementia advisers, introduced in England following the National Dementia Strategy.²⁸ Others felt that responsibility for the different components of ACP should be divided appropriately between professional groups according to their skills.

I think also it depends on what is the advanced decision? Is it related to finances where there might be more as a solicitor? Or maybe, I don’t know, a nurse, a dementia adviser … It’s probably not only one role: it’s psychiatrist, it’s nurse, you know it’s several where you can’t just give it to one professional. (R1, FG08, Consultant in psychiatry of old age)

Documentation

The vast array of documentation available for formally recording ACP discussions caused considerable confusion and whether they were legally transferable to other care settings. Palliative care specialists tended to use their own specifically designed forms, whereas solicitors were confident in using the complex, formal LPA forms. A further limitation of formal documentation was the extent to which it was possible to capture the full range of potential individual scenarios.

I suppose that’s the thing, it’s like these are kind of forms which are following A, B C, it’s like this linear process isn’t it and accounting for every eventuality but maybe you can’t always do that … we’ve done the paperwork, there you go, there’ll be no more problems now. Well, it’s not like that. (R34, RG04, Social worker)

It was also recognised that any dissemination strategy could be undermined; for example, rather than using official forms, community nurses tended to record patients’ wishes in their nursing notes, thus restricting access to other professional groups. In addition, some professionals recommended that even when a patient had engaged in ACP discussions, they did not want to formally record these.

People actually want to talk but they don’t necessarily want to write it down … it can be a stumbling block. (R71, FG01, Macmillan palliative clinical nurse specialist)

Timing of ACP

The lack of clarity about which professionals are, or should be, responsible for ACP could contribute to delays in initiating ACP, with the result that opportunities for planning are not provided while the patient still has capacity; this was crucial in dementia care.

So she needed to make a decision about whether she would be PEG fed at some point and by the time that was a reality the family were left to make that decision for her. And she had said anecdotally that she wanted the least intervention possible, but then nothing was documented … I suppose nobody took ownership or leadership of that process at all and everyone was floundering a bit with it. (R1, FG04, Social worker)

Palliative care specialists and community nurses reported using a variety of cues to gauge whether someone was interested in ACP, for example, talking generally about ‘the future’, and whether someone was a person who liked to plan ahead. For professionals involved in dementia care, timing was much less clear and harder to judge; almost all the participants considered the point of diagnosis too early and advanced dementia too late, the ‘right time’ remained unclear.

It’s actually now on our assessment document but it’s actually not the right time with the vast majority of patients. There are two questions with a tick box saying have you made an advance request or an advance decision it never comes out right if you ask those questions at that point. (R102, RF08, Consultant in old age psychiatry)

There was also a specific issue around the timing of the completion of ADRTs. As these documents are not time limited, there were difficulties in ensuring whether they remained relevant in the context of changing treatments, and as in dementia, an unpredictable illness trajectory.

… looking at advance decisions a little way down the line you have no idea what information was available to the individual when they decided not to have the particular treatment. (R130, Solicitor)

Financial costs of LPA

Participants were concerned that the current organisation and financial cost of the LPA process were barriers for many patients and families in dementia care. Although the emphasis was on undertaking the LPA at an early stage in the illness trajectory while the patient still had capacity, some families were reluctant to invest the money as they felt it might never be needed.

It costs over £400 to get a lasting power of attorney. And it costs £800 to £1000 if you do it via a solicitor. So a lot of people are put off with actually going through that process because of the cost of it. (R10, FG03, MCA trust lead)

Discussion

This study examined the factors that influence the implementation of ACP in dementia and palliative care in one area of the United Kingdom. While professionals agreed that ACP was a good idea in theory, implementation in practice presented significant challenges. The majority expressed uncertainty over the value of ACP, grounded in an anxiety to deliver patient choice, especially in dementia care. Many were uncertain about their responsibilities and unclear about what aspects of ACP were legally binding. The plethora of different ACP forms available added to this general uncertainty. In dementia care, finding the right time for health professionals to introduce ACP was a specific issue; this also seems to be the case in other non-cancer-related chronic illnesses, such as heart failure and chronic pulmonary disease, where prognostic uncertainty is more obvious.^{29

–32}

Strengths and limitations

A particular strength of this study compared to previous research^{17

–22,24,25} is that it sought the experiences of a wide range of professionals across several clinical settings; this allowed us to gather a unique view of the complexity of implementing ACP both within and external to the health-care system. However, the study was limited to one area of the country which may influence the generalisability of the findings. Our sample may also have included those professionals with a keen interest in ACP, so in practice, levels of professional uncertainty about ACP in the United Kingdom may be even greater; these findings may not reflect international practice, especially in countries where ACP has been part of routine care for a longer period, for example, Australia and the United States. A further limitation is that our data present professionals’ reported practice with no quantitative measure of their knowledge and experiences. In addition, our article does not include the views of the most important stakeholder group, patients and their families.

Implications for practice

Our data reveal that professionals exhibit considerable reserve about the value of ACP; this is in contrast to national policy initiatives promoting it. Despite the practical issues they encounter, this appears to be fundamentally related to a belief that their care systems are not adequate to meet patient wishes, especially in dementia care. It may, however, be due to a degree of pragmatic fatalism that one can never plan ahead for all the possible future scenarios. This mirrors the findings of research exploring older peoples, including those living with dementia, views on ACP. They are reluctant to engage in ACP adopting a ‘hoping for the best’ attitude^{33
–35} and prefer to trust their family or family physician to take responsibility for health-care decisions,^22,36 although relatives of people with dementia find proxy decision-making very difficult, especially at the end of life.³⁷

While this study confirms that ACP is a challenging area to enact;^{17

–22,24,25,34} it identifies specific areas for professional training. To undertake ACP, professionals need to have an understanding of relevant legal guidance around capacity issues;³⁸ in England, despite a clear Code of Practice (MCA 2005), this appears to be a difficulty,^{39
–41} although recent guidance specifically addresses this issue.¹⁶ Some community professionals, such as ambulance staff, need more practical training, such as case scenarios,²⁴ to enable them to better manage decision-making in time-pressured, complex situations. There is also an urgent need to simplify and standardise the range of ACP documents available and develop an appropriate dissemination protocol.

Greater clarity around individual responsibilities for different ACP components also appears needed. Our research reveals, however, that this ‘one size fits all’ approach may not be the most effective method to ensuring integration into routine care. The development and completion of an ADRT requires an assessment of capacity to be incorporated into the process; generalists may feel that this requires specialist medical input to ensure that the document is valid and applicable. An alternative tiered approach comprising a hierarchy of responsibility may be more effective; generalists (family physicians, community nurses) would be expected to be (a) skilled in carrying out areas of ACP in which they feel more confident, for example, advance statements, and (b) knowledgeable about signposting patients to relevant specialists for other components, for example, solicitors for LPAs.²⁵

Implications for future research

National guidance recommends ACP as best practice in both dementia and palliative care.^11,42,43 Our study has shown that ACP is a difficult area for many professionals to implement, especially generalists working in community settings and in non-cancer care. In view of this, careful consideration should be given as to whether ACP should be regarded as a formal measure of care quality.⁴² The ideals of ACP, to provide individualised care towards, and at, the end of life consistent with the wishes of the dying person, are widely supported. However considerable challenges appear to need to be addressed before professional carers can integrate ACP into routine care in an effective manner. Further research is needed exploring the influence of professional attitudes on the usefulness of ACP and whether they consider this a sufficiently meaningful process to warrant the large-scale policy initiatives it currently does.

Footnotes

Acknowledgements

The authors thank all the participants for the generous donation of their time and personal information to make this study possible. They also thank Lesley Robson, Macmillan nurse, Newcastle Primary Care Trust for assistance with recruitment and Charlotte Emmett for expert legal advice. The authors appreciate the support of NHS North of Tyne (Newcastle Primary Care Trust); Tees, Esk and Wear Valleys NHS Foundation Trust and Northumbria Healthcare NHS Foundation Trust. The authors thank Clare Vint for administrative support.

Contributors: L.R. was the principal investigator with responsibility for study management and the drafting of this article; C.D. was the senior researcher responsible for data collection, data analysis and interpretation and critical review of this article; C.B. was involved in the study design, data collection and analysis and the drafting of this article; C.E. was involved in the conception and design of the study, obtaining funding, data analysis and interpretation and the development and the drafting of this article; A.C. was involved in the study designs, participant recruitment and critical review of this article; J.H. was involved in the study design, participant recruitment and critical review of this article

All authors have seen and approved the final version. All authors had full access to all the data in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis.

Conflict of interest

The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the National Institute for Health Research Programme, the NHS or the department of Health.

Funding

This paper presents independent research funded by the National Institute for Health Research, Research for Patient Benefit Programme (grant number PB-PG-0807-11073), which had no input into the study design, data collection, analysis or interpretation. The decision to submit the article for publication was entirely independent of the funder, a copy of this article was sent to the funders prior to submission. L.R., C.B., C.E., A.C. and J.H. had financial support from the National Institute for Health Research in terms of funding the submitted work.

References

Kutner

The Living Will: a proposal. Indiana Law J 1969; 44: 539–554.

Law Commission. Mental incapacity, Law Commission. London: The Stationery Office, 1995, No. 231.

Department of Health. End of Life Care Strategy: promoting high quality care for all adults at the end of life. London: Department of Health, 2008. Available at: www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/DH_086277

Royal College of Physicians of London. Advance care planning: national guidelines. London: Royal College of Physicians, 2009.

Department of Constitutional Affairs. Mental Capacity Act Code of Practice. London: The Stationery Office, 2007. Available at: www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf

Baker

Leak

Ritchie

. Anticipatory care planning and integration: a primary care pilot study aimed at reducing unplanned hospitalisation. Br J Gen Pract 2012; 62: 84–85.

Caplan

Meller

Squires

. Advance care planning and hospital in the nursing home. Age Ageing 2006; 35: 581–585.

Detering

Hancock

Reade

. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340: c1345.

Molloy

Guyatt

Russo

. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. J Am Med Assoc 2000; 283: 1437–1444.

10.

Robinson

Dickinson

Rousseau

. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing 2012; 41: 263–269.

11.

National Institute for Clinical Excellence (NICE). Improving supportive and palliative care for adults with cancer: executive summary. London: NICE, 2004. Available at: http://guidance.nice.org.uk/CSGSP/Guidance/pdf/English (accessed March 2012).

12.

Bravo

Dubois

Wagneur

. Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med 2008; 67: 1122–1132.

13.

Jezewski

Meeker

Sessanna

. The effectiveness of interventions to increase advance directive completion rates. J Aging Health 2007; 19: 519–535.

14.

Patel

Sinuff

Cook

DJ.

Influencing advance directive completion rates in non-terminally ill patients: a systematic review. J Crit Care 2004; 19: 1–9.

15.

Ramsaroop

Reid

Adelman

RD.

Completing an advance directive in the primary care setting: what do we need for success?

J Am Geriatr Soc 2007; 55: 277–283.

16.

NHS National End of Life Care Programme. Capacity, care planning and advance care planning in life limiting illness: a guide for health and social care staff. Available at: www.endoflifecareforadults.nhs.uk (2011).

17.

Boyd

Mason

Kendall

. Advance care planning for cancer patients in primary care: a feasibility study. Br J Gen Pract 2010; 60: 449–458.

18.

Froggatt

Vaughan

Bernard

. Advance care planning in care homes for older people: an English perspective. Palliat Med 2009; 23: 332–338.

19.

Munday

Petrova

Dale

. Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England. BMJ 2009; 338: b2391.

20.

Stewart

Goddard

Schiff

. Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families. Age Ageing 2011; 40: 330–335.

21.

Livingston

Pitfield

Morris

. Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes. Int J Geriatr Psychiatry 2011; 27: 643–650.

22.

Mathie

Goodman

Crang

. An uncertain future: the unchanging views of care home residents about living and dying. Palliat Med 2012; 26: 734–743.

23.

Lorenz

Lynn

. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med 2008; 148: 147–158.

24.

Seymour

Almack

Kennedy

Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliat Care 2010; 9: 1–9.

25.

Bond

Lowton

Geriatricians’ views of advance decisions and their use in clinical care in England: qualitative study. Age Ageing 2011; 40: 450–456.

26.

Strauss

Corbin

Basics of qualitative research: techniques and procedures for developing grounded theory. 2nd ed. Thousand Oaks, CA: SAGE, 1998.

27.

Braun

Clarke

Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101.

28.

Department of Health. Living well with dementia: a national strategy. 2009. Available at: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_094051.pdf (accessed 20 January 2012).

29.

Rogers

Addington-Hall

Abery

. Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. BM J 2000; 321: 605–607.

30.

Gott

Gardiner

Small

. Barriers to advance care planning in chronic obstructive pulmonary disease. Palliat Med 2009; 23: 642–648.

31.

Sives

McKeown

Raeside

Introducing advance care planning in patients with advanced COPD. BMJ Support Palliat Care 2011; 1: 107.

32.

MacPherson

Walshe

O’Donnell

. P221 Advance care planning in chronic obstructive pulmonary disease: a qualitative study of patients’ views. Thorax 2011; 66: A158.

33.

Hill

Kellard

Middleton

. Understanding resources in later life: views and experiences of older people. York: Joseph Rowntree Foundation, 2007.

34.

Sampson

Jones

Thune-Boyle

ICV

. Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliat Med 2011; 25: 197–209.

35.

Samsi

Manthorpe

‘I live for today’: a qualitative study investigating older people’s attitudes to advance planning. Health Soc Care Community 2011; 19: 235–244.

36.

Schiff

Rajkumar

Bulpitt

Views of elderly people on living wills: interview study. BMJ 2000; 320: 1640–1641.

37.

Livingston

Leavey

Manela

. Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ 2010; 341: c4184.

38.

Nuffield Council on Bioethics. Dementia: ethical issues. London. Nuffield Council on Bioethics, 2009.

39.

Manthorpe

Rapaport

Harris

. Realising the safeguarding potential of the Mental Capacity Act 2005: early reports from adult safeguarding staff. J Adult Protect 2009; 11: 13–24.

40.

Manthorpe

Samsi

Heath

. ‘Early days’: knowledge and use of the Mental Capacity Act 2005 by care home managers and staff. Dementia 2011; 10: 283–298.

41.

Wilson

Seymour

Perkins

. Working with the Mental Capacity Act: findings from specialist palliative and neurological care settings. Palliat Med 2010; 24: 396–402.

42.

National Institute for Clinical Excellence. End of life care for people with dementia: commissioning guide. Implementing NICE guidance. Available at: http://www.nice.org.uk/usingguidance/commissioningguides/eolcforpeoplewithdementia/eolcforpeoplewithdementia.jsp (accessed June 2010).

43.

National Institute for Clinical Excellence/Social Care Institute of Excellence. Dementia: guidance on health and social care. NICE. Available at: http://guidance.nice.org.uk/CG42 (accessed November 2006).