Open discussions about death
Literature suggests that the discussion of end-of-life care issues is extremely difficult. Manistry (2003) reports that patients increasingly want to participate in decisions regarding their medical treatment, however, discussion about life prolonging medical technologies forces the patient to confront the inevitability of their fate. One argument for not discussing medical technologies with elderly people revolves around medical futility (Laake, 2003). This term is applied to justify withholding treatment in patients who are likely to gain minimal benefit. For example, the continued resuscitation of an elderly patient with terminal cancer may constitute such a situation, (Fine, 2003, Haes & Koedoot, 2003). Nowhere is the futility of medicine so clearly embodied as in resuscitation procedures for such people.
Surely this stance however is in direct contrast to patient autonomy and empowerment. Much emphasis has been placed on patients feelings with regard to clinical decision making, but should we also be concerned about the feelings of the medical team and their views of procedures that they may not consider to be in the patients best interests. Resuscitation is traumatic, and failed resuscitation is awfully traumatic. So, should we expect clinicians to carry out cardiopulmonary resuscitation on an elderly patient dying with cancer, because they completed a living will stating such?
The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment found that 33-50% of patients with metastatic cancer wanted DNAR orders in the 3-6 months before death, (Haidet et al 1998). Contemporary lay opinion indicates that demand for autonomy and informed choice from patient groups has not been matched by a parallel appreciation of the likely consequences of resuscitation, (MacDonald, 2001). Television drama has contributed to an optimistic lay view of the potential success of CPR.
Studies of elderly patient populations demonstrate that doctors misunderstand patient preferences for aggressive treatments at the end-of-life, (Uhlmann 1989). In the case of colorectal cancer in elderly patients, 2 in 5 patients did not want CPR. Of these patients who preferred not to have CPR, more than half did not have a DNAR order in their notes. Doctors incorrectly understood patients reuses preferences 30% of the time. A simple explanation would be a lack of communication, however, Ulhmann suggests otherwise. Where a conversation between a doctor and a patient was reported, then doctors understanding of the patients’ preferences was not better than in those instances when such a conversation had occurred. These findings suggest that communication about resuscitation does not necessarily improve doctors understanding of patient preferences.
In a study of 883 Doctors and outpatients, Johnston et al (1995) found that patients preferred to have discussions about advanced directives at a younger age, earlier in the course of an illness and in the doctor-patient relationship than did the doctors. Both groups thought it was the doctors responsibility to initiate discussion. The fact that patients prefer earlier discussions but do not prefer to initiate them, underscores the difficulties to effective communication between doctors and end-of-life care and advanced care directives.
Is talking about death a taboo subject?
A limited taboo thesis has been put forward by Walter, (2003) to argue that is not modern society per se, but particular key occupational groups within it, that find death peculiarly difficult to handle. In the mid-nineteenth century, priests were supplanted by doctors and public heath officials as the experts on death, (Aries, 1981), and today most of the routine procedures that take place in the days before and after a death are determined by medical and public health, rather than spiritual considerations. Doctors however are dedicated to keeping people alive and healthy, so death represents a failure for them. In the Chicago hospital where in the 1960’s Kubler-Ross first attempted to gain permission to interview dying patients, she was blocked by Doctors claiming that the patients could not cope with such conversations. In the event, she found all but one of eventually three hundred patients were relieved and delighted to be able to talk. The nurses on the wards relented first, while the doctors took the longest to accept they had been wrong, (Kubler-Ross, 1970).
In the book that she records this, however, Kubler-Ross insists that it is our society rather than the hospital that has imposed the taboo. Kellehear (1984) points out that patients who collude with their doctors in avoiding talking of death need not be denying death in a psychoanalytic sense, but may simply be avoiding conversational embarrassment since they know their doctors don’t like the subject. Although most people now die in hospital, most of the course of an illness is typically spent at home and in contact with nurses rather than doctors, (Cline, 1995) , so the death denying practices of hospital medicine may not be as salient for the dying and for their families as medical psychologists and sociologists have sometimes implied, (Kellehear, 1984).
The other occupational group that has taken over from the clergy in interpreting death for us are mass media personnel: the movie directors and news reporters who produce ‘death pornography’. Every time there is a disaster, it is not only reported, it is repeatedly reconstructed in the media. The media have an extraordinary power to interpret death for us. But yet, surely, for those who work in the media world of youth and glamour, death is also an embarrassment…. “Death and talking about it is one of the great taboo’s of our age”, (Radio Times, 24th February 1990). It seems that the two professions to which our society has entrusted the interpretation and ritualisation of death – medicine and the media – are, or have been, almost uniquely embarrassed by the subject. It is therefore not so much society as a whole, but these two institutions for whom death is or was a taboo.
Is there an awareness of finitude?
Ross, et al, (2002) used the term awareness of finitude to refer to age related recognition of impending death. There is increasing evidence that older people and their families differ from younger persons in a heightened awareness that their remaining time is limited and that death is growing near. Ross (2002) described a heightened awareness of finitude that becomes salient for most people in their seventies as they see more and more of their peers dying, (Marwick 2003). He suggested that this awareness results in the initiation of processes that help make older people more accepting of death. The first of these processes is the “legitimisation of biography,” a process where older people see themselves in a metaphorical sense as in the last chapters of their autobiography. This process is marked by the changes in time perspective, a withdrawal from orientation to the future, a focusing on the past, and a heightened pre-occupation with identity. The second process is the legitimisation of death. Older people not only want their lives to be good stories and to have a good ending, they also want to maintain their independence and a sense of mastery and control. They want their lives to be useful, to make others happy and do not wish to be a burden. The last part of Ross’ metaphor is “authorship”. Older people want to be the authors of their own stories and to be in charge of their life as a whole, including its ending.
A typical method in which older people prepare for death is through the process of life review. Butler (1963) described this process as a naturally occurring universal process through which older people systematically recall and evaluate their lives in the past to arrive at a sense that it has been meaningful. Seale, Addington-Hall and McCarthey (1994) contended that awareness of dying enables life planning to proceed an offers hope for a degree of control over the manner and timing of death. Relatives can be called and practical affairs can be set in order.
Is there such a thing as a Good Death or death with dignity ?
The phrase ‘dying with dignity’ is commonplace in everyday language. References to this phrase emerged in the 1970’s and this development led to the enactment of statues in the Unites States that officially recognised the right of patients to make advanced directives. The first such statue, the California Natural Death Act 1976, began: “ In recognition of the dignity and privacy which patients have a right to expect, the Legislature hereby declares that the laws of the state of California shall recognise the right of an adult person to make a written directive instruction his physician to withhold or withdraw life-sustaining procedures”, (Cited in Gillett, 2003). In this context, dignity seems to be nothing other than a respect for autonomy.
Commenting on the appearance of this vague usage in connection with end-of-life treatment, a US presidential commission observed: “Phrases like dying with dignity has been used in such conflicting ways that their meanings, if they were ever clear, have become hopelessly blurred” (Cited in Macklin 2003). Death is almost inevitable medicalised in western society. British and Commonwealth law consistently enshrines all the necessary permissions for doctors to cease intrusive and life prolonging treatment when they consider that the treatment is of no substantial benefit to their patient. Doctors should be open with their patients and their relatives and remain with them rather than abandoning them to substandard care. When they understand their task is to ease the patients dying rather than strive for life at all costs, good, dignified deaths can become much more the rule than the exception in hospitals.
Does dignity exist ?
Although interrelated, dignity and autonomy are slightly different concepts. Dignity refers to an individual maintaining self respect and being valued by others. Autonomy refers to individual control of decision making and other activities. The literature suggests that both the dignity and the autonomy of older people are often undermined in healthcare settings One would presume that health services aim to preserve dignity and autonomy and to minimise distress to patients. Yet, in many cases, these objectives are not being reached.
Dignity can be challenged primarily through negative interactions between staff and patients, a lack of regard for patients privacy and a general insensitivity to the needs and desires of an older population. Autonomy is threatened when patient and their carers are not given adequate information or the opportunity to fully understand their diagnosis and to make informed choices about their care.
However, dignity has been cited as a useless concept, (Macklin, 2003). Appeals to the human dignity populate the landscape of geriatric ethics. Claims that some of the medical technologies used violate or threaten human dignity are frequent. However, one must question whether dignity is a useful concept for an ethical analysis of medical activities.
New Medical Technologies
Improved medical technologies have had a huge impact on the field of medicine, not least, the area of end-of-life care, which has has benefited considerably, (Daly & Rosenfeld 2003) Cardiopulmonary resuscitation is an emergency treatment used when a person’s heart and breathing stop to restart their heart and breathing. Currently in England there is a CPR- for all policy, this means that age or disability alone do not affect the decision to carry out CPR. What is important is the state of heath, the patients wishes and the likelihood of the healthcare team being able to fulfil these wishes, (Resuscitation Council). One critical aspect of CPR is that it can be used to prolong life and defer death without consideration for an individuals dignity and quality of life.
There are some cases however where CPR is not attempted. It has been well established in law and ethics that competent adults have the right to refuse any medical treatment, even if that refusal results in their death, (Berger, 2003). Patients can choose to have a do-not-attempt-resuscitation (DNAR) order placed on their notes. This is a personal choice that can be made by the patient, usually in a living will or advance directive by putting their wishes in writing.
Seymour et al (2002) suggest that older people worry about practices which may prolong dying. Older peoples risk assessments were examined regarding the use of innovative health technologies in end-of-life care and related these to their ideas about natural death.
Should we be thinking about death?
Planning in advance is widely encouraged as a way to improve quality of care at the end-of-life. Cross cultural studies have shown that health care providers and patients often differ in their views on health related matters. The willingness to consider future illness at the end-of-life, for example is not universal; patients in some communities are reluctant to consider or speak about such matters, (Carrese, Mullaney & Thomas 2002). The elderly people in this study took a stance of living life ‘day to day’ and approach future problems by ‘crossing that bridge when they came to it’. The only way to ensure ones dying process is in accordance with wishes is to communicate this information to other people. So this would mean thinking about death. However, if people have no strong views about their dying process then there would be no need to think about death; however, in coming to this conclusion, one must have thought about their end of life wishes and inevitably death.
End-of-life decision making
Making decisions at the end of ones life are some of the most difficult decisions one may have to make, (Dyer, 2002). In most western countries, about 1% of the population dies every year, (Van der Heide, 2003) Ideally, discussions of this type would help relieve burden of decisions for the family when the elderly patient is no longer able to make decisions of their own. There is an idea supported by Fins et al (1999) that the elderly perceive a link between euthanasia and the completion of advanced care directives. There exists the possibility that preferences for care may change as physical or cognitive decline progresses. This further complicates end of life decision making processes as the future applicability of these difficult discussions maybe somewhat limited. Modern society and the pressures which it entails often results in difficulties related to discussing death and dying. The state to which death is regarded as a taboo subject will be reviewed later.
New decision aids would be helpful to the patient when making decisions of this nature. Deyo (2003) found that the printed material in doctors offices (from commercial publishers, consumer groups and professional societies among others) is often inadequate. Patients often find it is too simple or too technical; excludes discussion of the treatments they are interested in; and offers too little information on treatment efficacy, self management and prevention. Specialists find many materials offer false impressions of treatment effectiveness, emphasising benefits and minimising risks. Higher quality materials have been suggested by Deyo incorporating formal decision aids might facilitate better treatment decisions as far as patients are concerned.
Advanced Care Planning
Advanced care planning (ACP) is the term used for the process of preparing for likely scenarios near the end-of-life, (Ratner, 2001). In effect, it is a way that individuals can ensure that their dying process is in accordance with their wishes, ideally including a process of discussion, reflection and deliberation (Vandrevala, Hampson & Chrysanthaki 2002). ACP routinely includes assessment of and dialogue about patients understanding of their medical history and condition, values, preferences and personal, family, and community resources. It may also include the completion of a healthcare directive (advance directive or a living will) but it is important not to confuse the writing of a healthcare directive with the process of ACP; completion of a healthcare directive is only one part of ACP.
Published descriptions of efforts to assist elderly patients and families with ACP or the completion of directives for end-of-life care have documented significant shortcomings. Firstly, interventions have been poorly times or ill targeted, with much effort expended on patients whose death was imminent, (SUPPORT 1995). Secondly the setting for the ACP process has been in office or hospital settings, often limiting patient involvement. Finally some studies have focussed primarily on the completion of healthcare directives such as Luptack & Boult (1994). Unfortunately, Teno & Lynn (1995) suggest that there is little evidence to support the assumption that the completion of healthcare directive documents affects care at the end-of-life.
Ratner (2001) describes a novel approach to improving the decision making process for elderly patients. Patients receiving home health services were offered social work visits to complete a structured ACP process. There was almost universal acceptance of this process, (83 out of 84). This contrasts with a rate of 70% in a clinic based effort to complete advanced directives, a less time-consuming and more limited task than ACP, (Luptack and Boult, 1994). This study focused on the inclusion of involved family members and friends, thorough discussion of pertinent background information, patient and family strengths and resources, and preferences for the process of decision making in the comfort and safety of the patients’ homes. This is in contrast to a focus on patient autonomy in decision making and various legal aspects of the process.
This process was built on an ideal theoretical model for ACP: communicative ethics. This model led to greater attention to the context of end-of-life care than previous descriptions of ACP and used home based visits to explore patient and family issues and preferences.
Is there adherence to ACP?
Advanced care directives are cited as a means of promoting patient autonomy- that is, providing a written statement of treatment preferences made when the patient was in sound mind. One question is whether these documents really uphold the stated preferences of the now incapacitated patient. One prospective study by Danis et al, (1991) showed that in most cases advanced care directives were not consulted by carers in critical care situations. Work in the United States, cited by Thompson, Barbour and Schwarz (2003) has shown that advanced directives have no effect in improving the accuracy of substituted judgements by proxies (friends or relatives). No equivalent studies have specifically examined the effect of advance directives on health professionals decision making, although there is work on their views and experiences. When faced with an advanced directive in a critical care scenario, decisions must be made and subsequently justified, (Gordon & Singer, 1995)Thompson et al (2003) found that decisions made by health professionals about the ‘right thing to do’ when confronted with a hypothetical advance care directive critical care vignette varied widely.
In conclusion, it seems that advance directives are open to different interpretations and that anyone creating one cannot assume that any particular outcome will result from its implementation. Outcome depends to a great extent on who deals with the advance directive. This is the sort of reasoning that lies behind the driving force for legislation to make advance directives binding on health professionals – a move rejected in 2003 by the House of Lords. However, given the ambiguous nature of terminology used in advanced directives, it seems unlikely that successful prosecution could proceed, with the legal profession trying to interpret such terms as ‘life-threatening’ ‘irreversible’ and ‘futile’.
Research suggests a weakness of advance directives of this sort is that they give little information about what in the patients view constitutes a good quality of life, (Carr & Higginson, 2001)Such information might make decisions faced by health professionals easier. Increasing attention has been applied to the use of ‘value histories’ for this purpose. They identify core values and beliefs in the context of terminal care that are important to the patient. They might include for example placing a premium on remaining at home or on ‘buying time’ so that distant loved ones can visit.
As seems to be the case with lay carers, advance directives may have limited ability to influence decision making by health professionals on end-of-life, although they may exert other important benefits by opening dialogue and conferring peace of mind, (Schwarz & Perry 1998).
Living Wills
Many people are unaware of living wills but seem highly interested once they hear about them. Schiff et al (2000) found that elderly inpatients were confused by the term living will, but most would welcome the chance to discuss issues about facing the end-of-life, and many would want to limit their health care if they were critically ill. An assessment of the understanding of living wills in the United States some time ago found a similar state of affair. This juxtaposition of ignorance and interest raises an important question: what is this apparent appetite to discuss dying?
When lawyer Louis Kutner posed the notion of a living will in 1969, he was responding to the fear that technology was driving doctors to impose life sustaining treatment on their patients who may not want it, (Emanuel, 2002). The living will was seen as a simple device for patients to say no, even if they were too ill to communicate. The first living wills used phrases such as avoiding heroic treatment in the face of hopeless prognosis, and states passed legislation to give legal sanction to doctors honouring such directives throughout the US. But doctors found difficulty translating these dispositions into specific treatment choices and thus began the development of validated workshops.
It is difficult to turn subjective phenomena such as a persons values and goals for care in a hypothetical situation into objective criteria. But psychometricians have set out a series of standards for the valid framing of topics and the elicitation and recording of opinions, wishes and reasoning. So, the living will movement, which aimed to elicit preferences on how decisions should be made and by whom tried to apply these standard procedures.
Moving away from the notion of a legal defence against aggressive doctors, the living will movement realised that it is the process that is the central issue. The main outcome was to honour the best available portrait of the patients desires. A good process had to deal with several more things: the patients having a chance to consider and have some control over their last chapter of life; the proxy decision makers being ready for their roles; and the families having a chance to talk about issues relating to end-of-life and to resolve personal matters. Dying, it emerged, was a taboo topic that patients and families wanted to repossess. However, a number of studies show that living wills did not achieve their goal, (Steinhouser 1999) and some commentators advocated dropping the whole idea, (Becker 1993). Much research remains to completed however. Legal documentation has a small but legitimate role but the outcomes are quality experiences for the dying person and their families.
How stable are the views of older people about death related matters?
A key assumption underlying the use of instructional advance directives is that the preference for life-sustaining treatment will remain stable over time and across changes in the individuals physical, psychological and social condition. If treatment preferences change substantially over time or with changes in an individuals life condition, then wishes stated months or years before an incapacitating illness may no longer reflect accurately the decisions that an individual would make for himself or herself if currently available. Although research on the stability of life-sustaining treatment preferences have been conducted (e.g. Carmel & Muntran, 1999, Gready et al, 2000; Danis & Garrett, 1994.) ; it has been conducted almost exclusively outside the field of psychology. Consequently, the studies the been primarily descriptive in nature with little attention directed toward identifying the psychological factors that may explain preference and stability. A psychologically orientated approach is more likely to focus on directional trends in the desire for life sustaining treatment over time and identifying characteristics of judgement and individuals that moderate the magnitude of treatment preference stability. This type of specificity would be useful from a medical standpoint, allowing doctors and other decision makers insight into the conditions under which an individuals previously recorded decisions might be expected to change over time and whether the change is likely to be toward an increased or decreased interest in life-sustaining treatment.
Given that then amount of time and lack of financial incentives that doctors have for discussions of patients’ end-of-life care wishes, the ability to target for discussion those treatment preferences known to be relatively unstable over time would be extremely valuable. Ditto et al, (2003) suggest that some treatment preferences are more stable than others. Preferences were most stable for illness scenarios that were the most and least serious and for decisions to refuse treatment. Age, gender, education and prior completion of an advance directive were all related to preference stability, and evidence indicated the declines in physical or psychological functioning resulted in decreased interest in life sustaining treatment.
Research on the determinants of change and stability in preferences for life sustaining treatment can play a crucial role in developing effective policy and law guiding end-of-life medical decision making. To take just one example, if individuals were found to show significant changes in their interest in life sustaining treatment as a function of decline in their physical functioning, doctors could be informed that such declines should serve as a trigger for re-examination of treatment preferences documented in previously completed advance directives.
Conclusions
From the literature it seems as though rather than emphasising the completion of advance statements, it may be preferable to conceptualise advance care planning as process of discussion and review, rather than the formation of a ‘once and for all’ decision. This could reduce what patients perceived as the burden of decision making on families and could enable families and doctors to work together more effectively to give end of life care that is in keeping with the values and wishes of older people.
This research endeavours to provide an exploration of older peoples attitudes to medical technologies; their worries and fears about death and dying; and the future application of advanced care directives. End of life decisions are rarely spoken about and it seems there are questions surrounding this taboo that I wish to answer. A dignified end of life in keeping with ones own wishes is not a huge request, yet these requests are sometimes never made or made to the wrong people, which this research will also tackle.