Hastening death in end-of-life care: A survey of doctors

Abstract

The application of medical technology to prolong life at the expense of quality of life is widely debated in end-of-life care. A national survey of 3733 UK doctors reporting on the care of 2923 people who had died under their care is reported here. Results show that there was no time to make an ‘end-of-life decision’ (deciding to provide, withdraw or withhold treatment) for 8.5% of those reporting deaths. A further 55.2% reported decisions which they estimated would not hasten death and 28.9% reported decisions they had expected to hasten death. A further 7.4% reported deaths where they had to some degree intended to hasten death. Where patients or someone else had made a request for a hastened death, doctors were more likely to report expecting or at least partly intending to hasten death. Doctors usually made these decisions in consultation with colleagues, relatives and, where feasible, with patients. Intensive care specialists were particularly likely to report a degree of intention to hasten the end of life and to have treated patients lacking the capacity to discuss these decisions. Palliative medicine specialists were the least likely to report decisions they expected or at least partly intended to end life, in spite of reporting a high incidence of requests from their patients for a hastened death. Doctors with strong religious beliefs or who opposed the legalisation of assisted dying were unlikely to report such decisions. Elderly women and those with dementia are groups considered vulnerable in societies where a permissive approach is taken to hastening death in end-of-life care, but doctors describing these deaths were no more likely to report decisions which they expected or at least partly intended to end life. The survey suggests that concerns about the sanctity of life, as well as estimates of the quality of life, enter clinical decision-making.

Introduction

The medical care of people nearing the end of life often involves doctors in making decisions about whether to provide, withhold or withdraw treatments, in the knowledge that these actions may have an impact on length of life. Additionally, in some jurisdictions there is the option of intervening with the sole purpose of ending life (assisted dying, which includes physician-assisted suicide, euthanasia and life-ending without the patient's request). Prospects for recovery with an acceptable quality of life and the extent of existing suffering that further treatment may prolong, are central considerations for many doctors, although concern about the sanctity of life drives ethical objections to assisted dying. In addition, decisions can be influenced by the wishes of patients, where these can be ascertained, and of their families, perhaps particularly when patients are unable to communicate.

This paper reports a survey of doctors to estimate the prevalence of decisions involving the expectation or intention that these will hasten death, to establish how this varies across different medical specialties and care settings, and to establish the degree to which patients and families are involved in, or indeed make requests for these decisions. The survey produces results pertinent to the ‘slippery slope’ argument against permitting assisted dying, and demonstrates associations between doctors' religious beliefs and their clinical decisions. The study is therefore an empirical contribution to debates in bioethics.

Historical evidence (Kemp, 2002) suggests that doctors in the latter half of the twentieth century have become increasingly reluctant to apply medical technology to prolong life at all costs. The further step, in which intention to end life becomes the predominant motive, as in euthanasia or physician-assisted dying, is much more contentious and is not legal in the UK. Yet it is clear that even in a jurisdiction where assisted dying is not permitted, doctors may take decisions which they expect to contribute to the ending of life since they may take the view that an action is acceptable where the primary intention is to relieve the suffering of a person close to death. Establishing the prevalence of what are sometimes called ‘double effect’ decisions is therefore the first purpose of this study.

Caregivers across a variety of settings, including patients' own homes, care homes, palliative and other hospital care settings have reported requests from patients and families for assistance in dying (see, for example, studies in the USA by Carlson et al., 2005, Ganzini et al., 1996, Ganzini et al., 2002, Miller et al., 2004, Schmidt et al., 1996). They are particularly common in hospice and palliative care settings (Seale & Addington-Hall, 1995b) and in patients with cancer (Emanuel, 2002, Marquet et al., 2003). A further purpose of this study is to relate the incidence of such requests to the incidence of decisions where the doctor reports a decision which they expected or at least partly intended to hasten the end of life. In addition the extent to which doctors communicate about such decisions with patients and others is reported.

Attitudes towards these ethically contentious decisions differ between doctors and the general public and within each of these groups, reflecting the tension between quality of life and sanctity of life considerations. Studies of the general population show that the religious, the less educated, non-whites and disabled people are less likely to endorse assisted dying (Clery, McLean, & Phillips, 2007). In most countries where comparative research has been done, doctors are much less likely than the general public of those countries to endorse the legalisation of assisted dying (see, for example, Emanuel, 2002) and this has now been shown to apply also in the UK (Seale, 2009).

Within medical opinion there are marked variations. Seale's (2009) review of this literature cites studies showing that, as in studies of the general public, religion makes a difference (see, for example, Georges, Onwuteaka-Philipsen, van der Heide, van der Wal, & van der Maas, 2006) as does medical specialty. Oncologists, geriatricians and palliative care doctors have been found to be particularly opposed to assisted dying (Miccinesi et al., 2005, Seale, 2009) and intensive care physicians most supportive (Dickinson, Lancaster, Clark, Ahmedzai, & Noble, 2002). Dickinson, Clark, Winslow, and Marples (2005) review studies of American physicians, showing they are more willing to support physician-assisted suicide than active voluntary euthanasia. Whether attitudes influence clinical decision-making is a relatively unexplored issue, with the exception of Slome, Mitchell, Charlebois, Benevedes, and Abrams (1997) who found that doctors in San Francisco with high ‘intention to assist’ attitude scores did in fact assist more people with AIDS to die. The present study therefore investigates whether there is an association between doctors' attitudes or beliefs and their reports of decisions which they expect or at least partly intend to end life.

Concern has been expressed (Finlay, 2006, George et al., 2005, Saunders, 1992) that the legalisation of assisted dying could lead to a ‘slippery slope’ in which the lives of elderly people or those without the capacity to express themselves, become devalued. For example, there is some evidence (Seale & Addington-Hall, 1995a) to suggest that very elderly people – particularly elderly widows – are less likely to have family members with a strong emotional investment in the prolongation of their lives. Evidence from Switzerland where there is less regulation and monitoring of assisted dying than in other countries (Bosshard, Fischer, & Bär, 2002) may support this, as this shows that the practice incorporates significant numbers of elderly women without terminal illness (Bosshard et al., 2003, Frei et al., 2001). Where permissive legislation is accompanied by regulatory requirements to prevent abuse, statistical surveys have produced no evidence to suggest a slippery slope scenario (Bilsen et al., 2007, van der Heide et al., 2007). A final purpose of this study is therefore to establish whether groups sometimes considered vulnerable to the ‘slippery slope’ (elderly women, people with dementia) in fact experience a different rate of decisions where the doctor expected or at least partly intended to hasten death.

This study therefore aims:

• To estimate the prevalence of end-of-life care decisions which doctors expect or at least partly intend to hasten death, and to establish how this varies across different care settings, medical specialties and patient groups.

• To examine the role which religious beliefs and attitudes towards the legalisation of assisted dying are associated with readiness to take decisions doctors expect or at least partly intend to end life.

• To assess the degree to which requests for a hastened death from patients, relatives or others, are associated with the incidence of decisions involving an expectation or some intention to end life, and the extent to which such decisions are discussed with patients, relatives or others.

• To assess whether such decisions occur disproportionately in groups of patients considered vulnerable.