The Resourceful Patient

3.10 Ethical issues in the promotion of the resourceful patient

In many countries the improvement in health of the whole population has been accompanied by a widening health gap between the social classes with most wealth and those with least wealth. This widening gap reflects broad social trends, with the new style economy polarising those at the very bottom of the pecking order, having not only the lowest wages but also the greatest insecurity. Furthermore, in a knowledge society, decisions which are knowledge-based will be better made by those who are better educated, and they are usually those who are better paid. Similarly, knowledge resources made available to all patients would probably be adopted more frequently by better educated and wealthier people who already have access to more material resources. It is important, therefore, in promoting a range of measures to give patients more power, that these measures do not further widen the health gap.

3.10.1 Not providing resources is no option

One approach would be to continue as before, with all patients equally dependent and powerless, but this option is unacceptable. Even if only 5% of the population wish to hold their own records and manage much of their care, there is sufficient justification for them to be allowed to do so. At present change takes place at the rate of the slowest mover, and if some people are so anxious that they do not wish their health record to be on the Web, that should not prevent those who want to do so from achieving their objective.

What we are arguing, however, is not simply that 5% be allowed to have the necessary resources, but that the basic premise should be that individual patients hold their own records, organise their care and take responsibility, provided, of course, they are given the skills and resources to do so. This premise, if it were adopted, would be a change in the clinical paradigm and the result would be that those who did not choose to acquire the skills and use the resources would be regarded as deviant, even if they were in the majority. This could widen the health gap. However, there is no option but to offer skills and resources, and we must therefore compensate for individuals or sub-groups within the population who might have particular difficulty in coping with the new system. Groups worthy of particular consideration are:

  • people with a learning disability
  • people who become incompetent because of brain disease
  • young people who become incompetent because of brain injury or assault
  • children and adolescents

This is, of course, already an issue (1) and those who have problems with reading are at a disadvantage. One study found that 'people with limited reading ability have poorer health outcomes' (2). The World Wide Web, however, does offer opportunities for solving, or at least mitigating the problem because it is much easier, and cheaper, to make and present multi-media versions of printed patient education material, such as incorporating sound and video clips in different languages. The technology that could in one sense widen the health gap, could also help to narrow it.

3.10.2 People with a learning disability

In a world in which shared decision-making and evidence-based patient choice are promoted, people with a learning disability could be at a disadvantage, because they have been regarded as not needing to be provided with the opportunity to make decisions.

Although it is sometimes necessary for action to be taken that is against the express wish of the person with a learning disability, the basic premise must be that the person with a learning disability should have the same rights as other patients and, in consequence, to adapt decision-making in such a way that people with a learning disability are empowered. This issue was addressed by the NHS Breast and Cervical Screening Programmes, when women with learning disabilities and staff working with them were concerned that the information issued by the screening programmes did not take into account the fact that people with a profound learning disability might be unable to understand the language in which the choices were being offered to them.

Based on this experience, the National Screening Committee agreed the following measures:

  • each national screening programme should develop good practice frameworks in order to achieve equity of access for people with learning disabilities
  • performance management mechanisms should be used to ensure that such frameworks are in place and are adhered to
  • health professionals who work with people with learning disabilities should ensure that understanding of screening programmes is included in general education about healthcare for this population

The Cancer Screening Programmes set up a special project, involving women with learning disabilities, to discuss the issues and develop educational material that would allow people to make informed choices, and the general principles that emerged from this project were that wherever possible, women with a learning disability should:

  • have access to information to enable them to make their own decisions about whether or not to accept the invitation to attend for breast screening or cervical screening
  • know what to expect when they attend for screening so that it is a positive experience
  • understand the possible consequences of screening and the need to be aware of changes in their own bodies Preparing good quality information

The women with learning disabilities developed materials, both in simple language and in pictures, to allow people with limited reading ability to comprehend the options that were being presented to them. When this material was examined by the National Screening Committee it became obvious that it was very good, not only for people with a profound learning disability, but also for people who had difficulty with reading, a significant proportion of the population. One outcome of the project was the decision that the picture leaflet and the simple invitation letter should be sent to all women who had not previously responded to an invitation to come for screening (sometimes classified as 'refusers'), acknowledging the fact that a proportion of those women had not responded simply because they did not understand the letter of invitation. Changing the system

People are not only empowered by clearer words and better understanding. Healthcare systems have to change to facilitate and support empowerment, both at the point of decision about whether or not to have a mammogram or cervical smear and when actually attending for mammography or the smear test. Shown in the table below is an example of the good practice advice given to ensure that once a decision had been made, further issues could be adequately discussed so that women with learning disability would feel that they were being empowered during the process as well as during the invitation (Table 10).

Table 10: Good practice in screening

Book a longer appointment (at the static unit)

If a supporter, friend or relative is due for breast screening at about the same time, it may be helpful to book the screening appointment at the same session

If possible, provide dedicated time and space for those women who find it difficult to comply with the social expectations of a waiting room

Check that the supporter who will accompany the woman understands the screening process and if necessary arrange for a preliminary visitDiscuss issues of consent with the supporterConsider suitability for mammography and seek advice from the radiographer on what is technically possible for women with a physical disabilityAsk the GP or care home to arrange suitable transport for the woman if required

All these measures increase the probability that the person with the learning disability will be able to use the resources developed for them.

3.10.3 People who become incompetent because of brain disease

People with learning disability have impaired power of communication, and sometimes reasoning, but at least they are stable. More common and more complicated are the problems posed by people who lose the power of communication and who may or may not have advocates who can speak on their behalf. Terminal incapacity

The patient is wheeled into the emergency room; blood pressure has collapsed and the patient is unconscious, barely alive. The team, usually consisting of young doctors and nurses, swings into action, a central venous line is put in, fluids are given, the position is stabilised and the diagnosis made. During the course of the assessment, the presence of a long-standing stroke with severe disability is detected. Then some more details arrive and it turns out that the patient also has Alzheimer's Disease, lives alone, and has no relatives. Four days later, there is no sign of improvement and more intensive measures are necessary; infection sets in and intravenous antibiotics are required.

This scenario is common and young doctors and nurses have little option but to intervene when an old person is brought in; if they do not, they could be accused of ageism or even manslaughter. Furthermore, decisions about stopping or withholding treatment, even after the initial breathless emergency is over, can also lead to problems for the medical staff, and the letters NFR or DNR, 'not for resuscitation' or 'do not resuscitate', are now unacceptable.

In these circumstances there is increasing interest, particularly in the United States, in the living Will or 'instructive Advance Directive'. An instructive Advance Directive - You Decide

You Decide is the name of a book by Evelyn J. Van Allen on 'easing living wills and other Advance Directives to guide your treatment choices'. The book gives clear and explicit advice on the preparation of an Advance Directive and covers the various changes that are required, depending upon the particular state in which the person is living. The guidance is explicit and an example of the type of options that are provided in the book is provided. A Directive is written and signed and can even be videotaped, but of course merely preparing an Advance Directive does not guarantee that it will be used, and one study showed that only 26% of patients who previously made an Advance Directive had that living Will recognised during their hospital stay. The importance of the Advance Directive was also revealed by this study because when it was found and identified, it appeared to influence treatment decisions in 12 out of 14 cases (3). Public attitudes to Advance Directives

702 people from Boston, Massachusetts, were included in a survey of attitudes towards life-sustaining treatment and Advance Directives. 297 either refused or were ineligible for one reason or another, leaving 405 patients in the survey, to which were added 102 members of the general public. 93% of those patients interviewed, and 89% of members of the general public said that they wished to have an Advance Directive. The authors concluded that 'Advance Directives, as part of a comprehensive approach such as that provided by a Medical Directive, are desired by most people, require physician initiative, and can be achieved during a regular office visit'. (4) Evidence-based Advance Directives

The Advance Directive sounds like a good resource, but of course at the end of life, circumstances are not generalisable and each case has its own individual particularities. Furthermore, it may be many years since the patient wrote the Advance Directive and his views may have changed in the interim.

For example, in an Advance Directive patients, or potential patients, are asked to indicate whether or not they want 'mechanical breathing (respiration by machine through a tube in the throat) or dialysis (cleaning the blood by machine or by fluid passing through the belly)'. In a study of the wishes of 186 patients in the United States, the possible future need for mechanical breathing or, to be more precise, 'intubation and ventilatory support', was assessed by explaining what would happen during a severe pneumonia and what would be involved in intubation and ventilatory support. Nearly all the patients given this information said that would want intubation and ventilatory support and the more information they received, the more likely were they to accept the offer or be prepared to tolerate it for longer periods of time. These authors concluded that their study suggested that giving more detailed information about a particular medical problem or intervention 'may have strong effects on the preference of patients and their willingness to accept or refuse invasive medical interventions'. (5)

Unfortunately this type of decision often has to be made for patients who would never think of making an advance directive - people severely injured by accident or assault.

3.10.4 People who become incompetent because of brain injury or assault

Decisions to continue or withdraw treatment from someone who is going to die in the near future, often at the end of a long life, are harrowing. Even more difficult are decisions about intensive intervention, which carry a significant risk of aggravating the injury to the brain, for severely ill younger patients. This problem occurs frequently in places where young men are admitted with gunshot injuries to the head and where the outcome of surgical intervention could be:

  • recovery, either complete or with some residual disability
  • death
  • survival in a vegetative state

Furthermore, the two adverse outcomes, death and survival in a vegetative state, may be sub-divided into outcomes as listed below:

  • death, when the patient would have survived but in a vegetative state if he had not had surgery
  • survival after surgery in a vegetative state when the patient would have died if he had not had surgery
  • survival in a vegetative state when the patient would have had a better outcome, e.g. survival with minor disability, if he had not had surgery

In one study of this group of patients, the authors found that the Glasgow coma scale, which is a method of determining the depth of brain damage, allowed relatives and clinicians to 'limit the number of pointless neurosurgical procedures' but they emphasised that any guidelines developed should favour those who had even a small chance of living independently (6). The authors of this study recognised that it was carried out at a time when 'public health care dollars are increasingly scarce' and emphasised the need to be aware of this so that any decision should not be taken on the basis of cost or prognosis alone, but that ethical issues should always be involved, with the physician's role being as 'a provider of information and core decision-maker'. Are Advance Directives much use in empowering patients who are temporarily disempowered?

Advance Directives are receiving increased publicity. Their impact has hitherto been limited, particularly because even when they have been written, they may not be found when required. Furthermore, for young people with severe illness or injury, Advance Directives are irrelevant because they have rarely been made.

One approach is to train physicians to be sensitive to the options that exist and to develop services so that patients' relatives are empowered to make the decisions that match the patient's values at the end of life, or when difficult decisions are being faced. This approach has largely been used in the hospice movement which itself developed to empower patients at the end of their lives so that they could choose an active approach towards symptom control as opposed to the active approach towards cancer control. The latter was often the only option considered by staff or put to patients in the era before palliative medicine became a recognised and valued branch of medicine.

The growth of the hospice movement world-wide demonstrates how a new environment could create a new culture, and the relevance of the work of the hospice movement to the culture of general hospital care is now recognised (7). Furthermore, a review of trials of interventions designed to change clinical care at the end of life, which found 16 studies that met explicit criteria for study quality, concluded that it was possible to increase the incorporation of patient preferences in decision-making and that 'intensive educational interventions for physicians and broad educational programmes seem more promising than Advance Directives' in improving the quality of care and the empowerment of patients at the end of life (8). Resourceful patients in intensive care

At the moment of entry to intensive care, the patient is usually unable to play much of a part in decision making, or in their own care. The patient may be unconscious or paralysed and have no relatives or friends to act as advocate. The patient who leaves intensive care alive usually has better physical and psychological function, but is rarely able to use the resources described in this book. Evidence has emerged in 2001 that patients would, on average, benefit from a longer stay in intensive care. A proportion of the patients who die after discharge would not do so if the stay in intensive care were prolonged, but discharge is usually precipitated by the pressure to admit someone else who is in more urgent need of a bed. The staff do not know that the patient they are transferring to a non-intensive care ward will die, but they are often concerned that the patient is discharged too early.

If the patients being discharged could manage all the resources available, they could argue that they should stay longer in intensive care, but there is a limit to what can be expected of even the most resourceful of patients when they are severely ill.

3.10.5 Children

Parents and guardians have the right to make informed choices for children. At Bristol Royal Infirmary, an enquiry following a series of deaths among children with congenital heart disease, focused on informed consent as an issue as important as the competence of the clinicians. This enquiry, which is of such importance that its recommendations on respect, openness and honesty are summarised on our website, also raised the issue of parents' rights after the death of a child. Parents making decisions on behalf of children, like patients making decisions for themselves, need to know not only about the effectiveness of the intervention but also about the experience of the operator in carrying out that particular intervention.

The American Patients' Association lists five questions that patients or parents could ask of clinicians - provided, of course, that they had the confidence to do so - and although these questions do not relate to children, the principle, and the style of questions, could be used by parents.

  • Is the surgeon Board certified?
  • Does the surgeon have hospital privileges to do open cholecystectomy?
  • Was the surgeon formally trained in a recognised programme in laparoscopic cholecystectomy?
  • How many laparoscopic cholecystectomies did s/he do and what were the frequency and types of complication?

The Department of Health's response to Professor Kennedy's inquiry into children's heart surgery at the Bristol Royal Infirmary, emphasised that parents should be 'fully engaged' in decisions about their child. All the points made in the Kennedy Report about the need to communicate openly and honestly with parents and the need to respond truthfully to patients' questions 'be they adult or child' is recognised, reinforcing the point made in the Reference Guide to Consent for Examination and Treatment about the child's right to ask questions. Going against the wishes of parents

Occasionally it is necessary for a health service to take the place of parents and make decisions for a child. Among the most dramatic cases are those in which a child, whose parents are Jehovah's Witnesses, requires a blood transfusion. In these cases, the rights of decision-making have to be removed from the parents and transferred to the state, so that an appropriate decision can be made. Adolescence - a time of transition

Mary X moved from the paediatric diabetic clinic to the adult clinic at the age of sixteen; she was happy for her parents to continue to come to consultations with her.

Mary Y moved from the paediatric diabetic clinic to the adult clinic at the age of sixteen; from that time on she did not want her parents to come to the clinic.

In healthcare, as in family life, adolescence is a time of negotiation, and resourceful adolescents may wish to assume full responsibility for their care even though, or perhaps because, their parents feel they are not mature enough to do so.

The Department of Health guidelines on seeking consent specifically identify 'young people aged 16-17' as an age group entitled to consent to their own medical treatment. Children under sixteen can also give consent if they have the capacity to 'understand fully what is involved in a proposed intervention', and the level of understanding will obviously vary from one child to another, and be influenced by the complexity of the procedure or options.

3.10.6 Informed consent

Even touching a patient can be regarded as assault if the patient has not given valid consent. Clinicians have to seek consent in a wide variety of different circumstances, for example:

  • I am going to touch you in the course of examining you to find out what is wrong with you
  • I am going to take a blood sample from you
  • I am going to insert some stitches in this open wound and wish to explain to you what is gong to happen
  • There are two options for treatment: either an operation or drug treatment, and I am going to describe the risks and benefits of each option to you

In 2001, the Department of Health published a 'Reference Guide To Consent For Examination Or Treatment', recognising that the wide range of guidance that had been issued to clinicians was in need of clarification and simplification. Furthermore, the European Human Rights Acts required the United Kingdom to re-visit its legal principles relating to informed consent. The guidance covers a wide range of different situations including seeking consent from adults without capacity, either permanent or 'fluctuating', and children and young people. Specific guidance is given on withdrawing and withholding life-prolonging treatment for both adults and children, again with separate advice given for those without capacity.

The issue of capacity is of central importance, and the Department of Health defines capacity by saying that 'for a person to have capacity he or she must be able to comprehend and retain information material to the decision, especially as to the consequences of having or not having the intervention in question, and must be able to use and weigh this information in the decision making process.' The guidance tries to define 'sufficient information' but the definition provided has a degree of circular logic because it says 'in considering what information to provide, the health professional will try to ensure the patient is able to make a balanced judgement on whether to give or withhold consent.' It specifically advises clinicians to inform the patient of any 'material' or 'significant' risks in the proposed treatment, any alternatives to it, and the risks associated with doing nothing. The General Medical Council states that the doctor should not only do his best in summarising the evidence about treatment options. It requires him also to seek to find out the patient's individual needs and priorities when providing treatment options, because even advice which seems relatively simple has to take into account the condition and values of the individual.

A professor of medical law, commenting on these guidelines, emphasises that 'disclosure of risk is one of the few remaining areas of uncertainty' but concludes that 'patient autonomy has triumphed and people may now decline medical treatment for whatever reason they choose' (9).


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