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Age and Ageing Advance Access originally published online on January 13, 2006
Age and Ageing 2006 35(2):116-121; doi:10.1093/ageing/afj035
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© The Author 2006. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Living wills and the Mental Capacity Act: a postal questionnaire survey of UK geriatricians

Rebekah Schiff1, Peter Sacares2, Jane Snook3, Chakravarthi Rajkumar4 and Christopher J. Bulpitt5

1 Department of Ageing and Health, 9th Floor North Wing, St Thomas’ Hospital, London SE1 7EH, UK
2 Hathaway House, Popes Drive, London N3 1QF, UK
3 Department of Elderly Care, Charing Cross Hospital, London W6 8RF, UK
4 Brighton & Sussex Medical School, Royal Sussex County Hospital, Brighton, East Sussex BN2 5BE, UK
5 Care of the Elderly, Imperial College, Hammersmith Hospital, London W12 ONN, UK

Address correspondence to: R. Schiff. Email: rebekah.schiff{at}gstt.nhs.uk


   Abstract
Top
 Abstract
Introduction
 Methods
 Results
 Discussion
 Conclusion
 Key points
 Competing interests
 Funding
 References
 
Objective: to determine geriatricians’ experience of and views on living wills, National Health Service Trusts’ support of advance end-of-life health care planning and geriatricians’ views on related legal changes in the Mental Capacity Act.

Design: anonymous postal questionnaire survey of all 1,426 British Geriatrics Society members in England, Wales and Northern Ireland.

Results: a total of 842 (59%) questionnaires were returned. Of 811 geriatricians, 454 (56%) had cared for patients with living wills. Of the 280 who cared for patients when the living will had come into effect, 108 (39%) had changed treatment because of the living will and 84 (78%) of those felt that decisions had been easier to make. Living wills not already in effect made discussions with patients [171 of 178 (96%)] and families [135 of 178 (76%)] easier. Of 779 geriatricians, 713 (92%) saw advantages of older people using living wills; 467 of these also expressed concerns. Only 16 (2%) geriatricians who had concerns said that there were no advantages. A total of 214 (27%) were aware that their Trust had a form to help with discussions about cardiopulmonary resuscitation. Fewer [126 of 781 (16%)] were aware of a Trust policy on living wills. The proposal, in the Mental Capacity Bill, for advance refusals of treatment was supported by 59% (476 of 801), yet the proposal for a lasting power of attorney (LPA) covering health care was only supported by 47% (382 of 806).

Conclusion: many geriatricians have positive experiences of caring for patients with living wills. Despite recognising potential problems, most geriatricians support the use of living wills by older people. However, most believe that their Trust does not have a policy to support advance health care planning. Geriatricians have reservations about LPAs covering health care.

Keywords: living wills, Mental Capacity Bill, older people, advance health care planning, elderly


   Introduction
Top
 Abstract
 Introduction
Methods
 Results
 Discussion
 Conclusion
 Key points
 Competing interests
 Funding
 References
 
Making health care decisions, in patients’ best interests, for patients who cannot communicate their wishes is a difficult everyday occurrence for physicians, particularly those caring for older people. Advance health care planning in the form of documents such as living wills (also known as advance statements or advance directives) might help make these decisions easier by enabling people to discuss in advance and record their end-of-life health care wishes [1]. However, there are many ethical and clinical concerns about advance health care planning [2, 3]. Despite this, the Mental Capacity Act 2005 has changed the law in this area. The previous ‘common law’ position on advance refusals of treatment has become enshrined in statute, and a new role of lasting power of attorney (LPA) for welfare including health care has been created [2, 4].

As the largest medical speciality in the UK dealing with end-of-life issues [5], geriatricians have a pivotal role to play in the debate on these issues. This is the first comprehensive survey to determine their experience of and views on living wills. It is also the only survey of their opinion on related changes to the law, as were proposed in the Mental Capacity Bill (now Mental Capacity Act 2005).


   Methods
Top
 Abstract
 Introduction
 Methods
Results
 Discussion
 Conclusion
 Key points
 Competing interests
 Funding
 References
 
An anonymous postal questionnaire survey of all British Geriatrics Society (BGS) members in England, Wales and Northern Ireland was conducted. Members in Scotland were excluded due to differences in Scottish law.

We designed, piloted and revised a questionnaire to collect quantitative and qualitative data (questionnaire available at http://ageing.oxfordjournals.org/). For the questionnaire, ‘living will’ was defined as any recording of someone’s health care choices should they in future require health care when they could no longer communicate their wishes [6]. It had to be more comprehensive than a simple statement regarding cardiopulmonary resuscitation (CPR).

In spring 2004, all BGS members were sent a numbered questionnaire with a prepaid return envelope. This was prior to the enactment of the Mental Capacity Bill. After 6 weeks, non-responders were re-mailed. To ensure anonymity, only a statistician was aware of the identity of responders and non-responders.

Ethical approval was granted by the ethics committee chairman, as the project was judged not to require full local research ethics committee approval.

Statistics
Data were analysed using SPSS version 12. Confidence intervals for proportions were calculated using the normal approximation to the binomial distribution. Qualitative data were summarised according to major themes arising from comments and results boxed non-numerically.


   Results
Top
 Abstract
 Introduction
 Methods
 Results
Discussion
 Conclusion
 Key points
 Competing interests
 Funding
 References
 
All 1,426 eligible BGS members were mailed. A total of 842 (59.0%) questionnaires were returned. Thirty were returned blank. Results are based on the 812 questionnaires returned fully or partially completed.

Almost all (97%) respondents were hospital-based geriatricians. Their demographic details can be found in Appendix 1 (supplementary data are available at Age and Ageing online).

Experience of and views on living wills

Living wills that had come into effect
Of the 454 (of 811) [56% (95% CI 53–59)] geriatricians who had cared for patients with living wills, 280 (62%) had cared for patients at the time the living will had come into effect. Many had been aware of the presence of these living wills prior to the situation arising when they came into effect (18% always, 72% sometimes and 10% never). Advice concerning the validity of these documents was sought by 44%, most frequently from hospital lawyers (57%).

There were 108 (39%) geriatricians who felt that they had changed treatment as a direct result of living wills. These changes were felt to have had a positive effect on care in 57 cases (54%), negative effect in 15 cases (14%) and no overall effect in 33 cases (31%). The majority felt that the living will had made decisions easier (n = 84, 78%).

Comments pertaining to positive effects are summarised in Table 1. Few negative effects were described, but they were reported to have significant effects. There were situations where patients’ care was transferred to a different physician because the first team felt unable to comply with the living will. Some living wills had only appeared days into an admission, resulting in withdrawal of interventions. A few doctors felt that patients might have survived had it not been for their living will. Two stated that they had been inappropriately prevented from providing artificial nutrition; one wrote, ‘the patient had a slow death from malnutrition’. Difficulties with relatives related to their misunderstanding when the living will had come into effect.


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  		Table 1.. Positive effects of living wills that had come into effect

 


Living wills that had not come into effect
Of the 435 geriatricians that had cared for patients with living wills that had not come into effect, 178 [41% (95% CI 36–46)] felt that the presence of a living will that had not come into effect had altered the way in which they discussed patients’ health care with them and their family. It was easier to approach the subject of end-of-life care with the patient (96%) and relatives (76%). Some (32%) had found that it increased the time they spent discussing these issues with the patient; only a tiny proportion felt that this was an inappropriate use of time with the patient (3.4%) and/or the relatives (5.0%).


Opinion on the use of living wills by older adults
Most, 713 of 779 [92% (95% CI 90–94)], geriatricians felt that there were advantages of elderly people using living wills. Two-thirds of these also expressed concerns. In total, 515 of 799 (65%) geriatricians expressed concerns, with only 16 (2%) of these saying that there were no advantages. Tables 2 and 3 detail these results.


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  		Table 2.. Advantages of the use of living wills by older people (n = 752)

 

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  		Table 3.. Concerns surrounding the use of living wills by older people (n = 570)

 

Need for a proforma especially for the elderly
Two-thirds of geriatricians (517 of 781) felt that an expression of wishes for health care proforma specifically designed for the elderly would be useful in practice, 14% did not and 18% were unsure.


Helping others to construct a living will
Very few geriatricians had helped someone construct a living will [45 of 809 (6%) (95% CI 4–7)]. Those who had, helped patients (n = 23, 51%), family (n = 20, 44%), friends (n = 5, 11%) and a colleague (n = 1, 2%). Half had used a proforma, most frequently that produced by the Voluntary Euthanasia Society (VES) (68%) and the Terence Higgins Trust (23%). Advice had been sought by 62% from various sources: British Medical Association (BMA) literature, VES and Trust legal advisors.

Trust systems for advance health care planning
Few geriatricians [126 of 781 (16%) (95% CI 14–19)] were aware of a Trust policy on living wills. A total of 334 (43%) said that there was no policy, and 321 (41.1%) were unsure. Only 214 of 784 (27%) (95% CI 24–30) were aware that their Trust had any form to help patients record their health care wishes in advance. For almost all (95%), this form only addressed CPR. Ten geriatricians stated that their Trust had a form that addressed multiple health care issues.

The Mental Capacity Bill
Of 801 geriatricians, 476 (59%) (95% CI 56–63) supported making an advance refusal of treatment legally binding, seeing it as a clarification of current ‘common law’. Seventeen per cent were against the proposal, and 24% were unsure.

Qualifying comments were similar to those in Tables 2 and 3, concerning the use of living wills by older people. Further comments included the need for clear definitions of medical terms and illness severity (e.g. ‘terminal’ and ‘advanced dementia’).

Of 806 geriatricians, 382 (47%) (95% CI 44–51) supported legislation for an LPA for health care, 26% did not and 26% were unsure. The positive and negative points raised by respondents are summarised in Table 4.


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  		Table 4.. Comments concerning the proposed lasting power of attorney (LPA) for health care

 


   Discussion
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
Conclusion
 Key points
 Competing interests
 Funding
 References
 
Living wills
Over half of UK geriatricians who responded had cared for patients with living wills. Most experiences were positive: decisions were made more easily and changes in treatment were felt to have had a positive or neutral effect on care. Living wills that had not come into effect aided discussions about end-of-life care without inappropriately increasing time spent with the patient or relatives.

Geriatricians’ concerns about living wills were outweighed by their advantages: only 14% felt that a proforma for older people would not be useful. This positive attitude has also been documented in other countries: most Arkansas physicians had a positive attitude to living wills, enhanced by experience of the documents [7]. Surveys in Finland and Japan also demonstrated positive attitudes to living wills among physicians [8, 9].

The main positive effect of living wills related to following a patient’s wishes for less invasive, predominantly palliative care at the end of life. Yet literature is mixed regarding the effectiveness of these documents. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) study, a randomised controlled trial of end-of-life communication and documentation in seriously ill hospitalised patients, did not demonstrate any improvement in care [10], but only a small number of patients (22 of 4,804) had relevant living wills. This study also suggested that the health system infrastructure may be a greater predictor of place of death than patient preference [11]. Others report that those with a living will who chose to die at home are more likely to do so [12]. In nursing homes, a randomised controlled study found that homes with living wills reported fewer hospitalisations, with no increase in death rate [13]. However, a prospective study concluded that previously expressed wishes were followed 75% of the time, irrespective of the presence of a written living will [14].

The problem of timely retrieval of documents has been described [8, 10]. Communities where efforts have been made to educate the public and improve accessibility to these documents have been effective elsewhere [13, 15], and some living will proformas include alert cards for the owner to carry [16].

Individual comments demonstrate the difficulty of reconciling the decision of the individual to forgo life-sustaining interventions in certain circumstances within the health care teams’ remit and personal beliefs in preserving life. The principle of acting in a patient’s best interests is upheld in the Mental Capacity Act. Furthermore, guidelines recommend that patient care be transferred to an alternative health care team if there are issues of conscientious objection [17].

Greatest concern was expressed over the possibility of a change in sentiment when faced with a situation previously envisaged. Several research studies have sought to address the issue of consistency of preferences over time. Patient groups recruited from hospital inpatients [18], outpatients [19], nursing homes [20] and primary care [21] have demonstrated high levels of stability for decisions concerning treatment preferences in hypothetical scenarios over up to 3 years of follow-up. Factors associated with the stability of decisions are decisions to forgo treatment [21], age [22] and having written a living will [21, 22]. However, literature is scarce on whether peoples’ views change when faced with a situation previously envisaged because of the difficulty in conducting such research. One study demonstrated that patients’ evaluation of a future health state (post irradiation for laryngeal cancer) did not change once they had entered that state [23]. Others compared severe stroke survivors’, healthy controls’ and health professionals’ perceptions of quality of life in hypothetical scenarios of mild, moderate and severe stroke. Controls rated quality of life lower in all scenarios compared with the other groups, but results were limited by small numbers and inevitable selection of patients who had made an excellent recovery from their stroke [24]. Thirdly, retired physicians with functional decline and/or worsening depression preferred high-burden life-sustaining treatment compared with physicians of similar age without such decline [25]. We found no longitudinal studies of treatment preferences before and after a major change in health. One practical approach to this uncertainty is for physicians to prompt regular reviews of living wills, particularly when the owner’s health alters.

It is of concern that so few geriatricians had been involved in the construction of living wills. It is essential that people completing such documents understand health care options in end-of-life care and the implications of their decisions. Doctors, especially geriatricians, are well placed to provide such information. Although some may choose to discuss these issues with their general practitioners or nurses, it is likely that, as in the USA, many may be being completed without recourse to medical personnel [26]. Physicians find it difficult to discuss end-of-life care and may know little about the legal status of living wills; hence, they are unlikely to initiate discussions [27]. Furthermore, a lack of National Health Service (NHS) Trust systems to support completion of such documents encourages people to seek other sources of help. The Patients Association leaflet refers people to the VES living will booklet and solicitors, rather than medical professionals [28].

Trust systems for advance health care planning
Fifteen per cent of NHS Trusts in 1999 had a policy on advance directives [29]; our survey suggests that this has changed little. Despite national guidelines, only a quarter of geriatricians were aware that their Trust had a form to help patients record their CPR preference [30]. In contrast, 10 geriatricians reported systems enabling patients to record multiple end-of-life health care choices.

The Mental Capacity Bill
There was less support for legislation regarding living wills than for the concept behind such documents. Experience in the USA has led to proposals emphasising greater patient–doctor communication on end-of-life care, rather than complex legislation and completion of legally binding documents [26]. However, legislation to enhance incentives for compliance with living wills has resulted in greater compliance with patients’ wishes [31]. It is important that the UK learn from experience elsewhere and ensure that legislation encourages positive, well-informed relationships between medical staff and their patients regarding their end-of-life care preferences.

Geriatricians were particularly concerned about the proposed development of the LPA for health care—this is backed by the literature. Agreement between surrogate and patient varies from 57 to 81% for life-sustaining interventions in various illness scenarios [32, 33], one study reporting that agreement was no better than would have been expected by chance [34]. These same studies demonstrate that surrogate decisions show greater agreement with those of patients when they have previously discussed end-of-life issues [32–34]. Intervention to facilitate such discussions has been shown to be effective [35]. There is also evidence that surrogates increase the probability of receiving acute care in the last month of life and decrease the probability of palliative care [30]. In the UK, only a quarter of older people had discussed end-of-life health care with those they would nominate as their LPA for health care [6]. Legislation should promote discussion between LPA and those they will represent on end-of-life issues. The health service could play a pivotal role in this process.

Limitations of the research
Our response rate was 59%. It is likely that the views of the non-respondents would have been different. Although a letter accompanying the questionnaire assured respondents of the anonymity of their replies, some may not have trusted our system, and this may have influenced some responses and deterred others from replying. Summarising comments may lead to bias since some respondents wrote vociferously, whilst others offered short comments or none at all. Some respondents criticised our questionnaire as ageist. However, older people are a group for whom advance health care planning may be very relevant, yet a complex multiple pathology makes decisions more difficult, and also for whom living wills are less well accepted compared with other patient groups, e.g. patients with acquired immune deficiency syndrome [36] and cancer [37].


   Conclusion
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Conclusion
Key points
 Competing interests
 Funding
 References
 
Geriatricians who responded to this questionnaire were strongly in favour of the use of living wills by older people despite recognising the potential for problems. Over half had cared for patients who had living wills, and most felt positively about this experience. Geriatricians have significant concerns about the role of LPA in health care.


   Key points
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Conclusion
 Key points
Competing interests
 Funding
 References
 

  • Many geriatricians in the UK have cared for patients with living wills.
  • Geriatricians’ experience of living wills suggests that they make treatment decisions easier.
  • Geriatricians are in favour of the use of living wills by older people.
  • Geriatricians have reservations about the role of LPA in health care.


   Competing interests
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Conclusion
 Key points
 Competing interests
Funding
 References
 
All authors declare that they have nothing to declare.


   Funding
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Conclusion
 Key points
 Competing interests
 Funding
References
 
Funding was obtained from a BGS Specialist Registrar start-up grant. The research was conducted independently of the funder.


   Acknowledgements
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Conclusion
 Key points
 Competing interests
 Funding
 References
 
We thank all the members of the BGS for participating, Recia Atkins at the BGS for providing a list of members, Mary Lamont and Dawn Campbell for helping to mail the questionnaires, Winston Banya for ensuring the anonymity of mailing and all the doctors who piloted the questionnaire.


   References
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Conclusion
 Key points
 Competing interests
 Funding
 References
 

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Received June 22, 2005; accepted in revised form November 29, 2005.


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