The ability to make these decisions is called mental capacity
Every day we make decisions about lots of things in our lives. The ability to make these decisions is called mental capacity. Treatment refusal is commonly seen and heard in hospitals and care home. Most of these individuals rejecting treatment are wishing to apply and use the rights of self determination or decisional ability. Consent is vital in any medical treatment. It is the first tool needed before any treatment intervention. Moreover, it seems like treatment refusal is one of the most common medical and nursing issues in health care causing ethical dilemma to health care professionals. Therefore, the student decided to look at the rights of a person to facilitate such demand. The author will explore morals and ethics that are related to the topic issue which is treatment refusal. The literature review will look at the principle of right to autonomy that would tackle consent if genuine in making the refusal for treatment possible. The extent of the rights for autonomy in refusing treatment is explored and explained as well. Principle of beneficence is tried to explore focusing on the ethical dilemma experiencing by the health care professional more specifically the nurse in dealing with this ethical issue. Moreover, privacy and dignity and the principle for advocacy will be passing through while respecting the decision of the people rejecting medical treatment and intervention. In this case, this literature will now start exploring rights of an individual with both capacity and lacking capacity to exercise the principle of autonomy for treatment refusal.
It is indispensable to know that every individual has loads of human rights (Dennehy, 2006). Therefore, treatment refusal belongs to these rights. As stated by Tingle and Cribb (2002), the patient has the right both to consent and to refuse medical treatment. Department of health ((DH, 2001a, cited in Tweddle, 2009) has explained that before a health care professionals administer treatment to a client or patient, or conduct an investigation or assist with the care, it is required to obtain first the patients valid consent. Moreover, it was also stated there that the law holds bodily integrity in most consideration and thus by gaining consent identifies and respects a person’s right to establish what happens to one’s body.
Moreover, if a competent adult is touched with no consent, they have the right to take legal action for trespass to their person (DH, 2001a, cited in Tweddle, 2009). Therefore, the health professional always gained valid consent, then they will normally protected from a thriving action for trespass (Dimond, 2000a cited in Tweddle, 2009). Moreover, to attain all this, a valid defence next to the claim of trespass, consent must be full in a way that the patient or client agrees to all of the proposed treatment. Moreover, free consent is another type of consent to treatment which means the free choice of the individual and cannot be gained by unwarranted influences. And the last consent is the informed consent. Here, the patient needs to be aware of all the significant information in order to make an informed personal choice (Griffith, 2004 cited in Tweddle, 2009).
McParland et al, (2000) carried out a study considering patients understanding with regards to the consent process. It was a research study made by Taplin. (1993, cited in McParland et al, 2000) where a mixed sample of patients who were interviewed postoperatively to start their gathering views on the consent method and to determine how much information does they gave to the patient to be able to understand the consent process. Moreover, the amount of information that had been given will be used as basis for informed decision with the treatment. Simple questions were asked to the participants regarding their treatment and consent. The marks highlighted a variety of reasons of why the consent was not enough. These three reasons were given by the staff was poor and ample, while some receive no information at all. The last information gathered shows no understanding from most of the consent process.
With the findings acquired from the study, Taplin (1993, cited in McParland, 2000) recommended that consent is not showing or giving importance at all to the patient while more other from the client were unaware about the consent and the nature of operation or surgery they were signed for. Irrelevant information is obvious in the result which shows discrepancy due to unserious consent taking. However, the study also shows that the consent was required at a time for the staff convenience rather than the patients. Moreover, it was observed that the patient does not given enough time to make a decision with much greater understanding.
Kerrigan et al (1993 cited in McParland et al, 2000) on the other hand carried out another study which tested the assumption that patient would become unduly anxious if given detailed information about the risk of the surgery in an effort to get hold of a complete informed consent. It was stated that the patient anxiety was measured prior to and after information was given which all about the risk involved in surgery. Thorough information with reference to the risk involved was given to the male patients group while simple explanation about the surgery was then given to the other group. The study shows that by providing detailed account of the risks does not result to increase anxiety. Furthermore, it gain an advantage of allowing patients to make a complete informed choice with regards to giving consent in the surgery.
It should be understood by all health care professionals that consent from a client is very essential in medical treatment. Moreover, obtaining consent to treatment has numerous imperative functions apart from averting law suits (Mcparland et al, 2000). Tschudin (2003, p. 81) discussed the importance of obtaining consent before giving any treatment of care. All patients and clients have the right to receive information about their condition. One should be sensitive with the needs and respect the wishes of those who refuse or unable to receive information about ones condition. Moreover, information should be accurate, truthful and presented in such a way as to make it easily understood. One may need to seek legal or professional advice, and guidance with regards to the giving or withholding of consent.
Respecting patients and clients autonomy is vital in obtaining consent with regards to the right to decide whether or not to undergo any health care intervention even if the refusal may result to death to them, unless a court of law orders to the contrary. When acquiring valid consent, one has to be sure that it is given by a legally competent person or individual. Moreover, it should be given voluntarily and lastly it should be informed.
Hence, an action in battery maybe brought if treatment is given in an individual whom already discussed the negative response for consent. Haxby and Shuldham (2008 cited in Tweddle, 2009) stated that any competent mentally adult has the right to refuse and give consent for medical treatment. Therefore, the ethical principle that is always underpinned with it is the respect for autonomy. The word self – determination and autonomous individual is usually associated with the word autonomy. In this case, it is better for the author to discuss the principle of autonomy.
It would be of enormous sympathy to discover first the definition of autonomy. The word autonomy comes from the Greek word “auto" which means self and “nomos" which stands for rule or governance. Thus, when these two words combined together will come out as self – rule or self governance. It is learned that autonomy is a basic ethical principle in health care that stands in conjunction with other principles (Wilmot, 2003 cited in Hewitt-Taylor, 2003). Moreover, these principles may be interpreted in a different way by individuals and professional groups (Hewitt-Taylor, 2003).
Being an autonomous individual means deciding on personal life. It is the right for an individual who has the capacity to decide for one self. Furthermore, the concept of consent is one of the best ways to practice the right for self – determination (Hendricks, 2000 cited in Tweddle, 2009).
Meanwhile, Collopy (1995 cited in Boyle, 2008) greatly emphasize ‘decisional autonomy’ as the capacity to make decisions and to have personal preferences and values irrespective of having an ability to carry them out autonomously or commonly known as executional autonomy. Furthermore, Collopy (1988 cited in Linzer, 2002) make a distinction involving competent and incapacitated autonomy. As described, competent autonomy refers to preference or action that was informed. Thus, it can be realistically protected, and is helpful in choosing appropriate way to considered necessary ends. Incapacitated autonomy on the other hand, is composed of choices or activity that is basically uninformed, unreasonable or unsound. Likewise, when incapacitated autonomy leads to a detrimental outcome, it will then now provide grounds for overruling in the choice of elderly and behaviour. Now, the principal ethical challenge for health care professional involves the finality when the exercise of autonomy is so incapacitated that interference is justifiable.
It is learned the capacity is supreme to consent. In the year 2007, the Mental Capacity Act 2005 has come into force in England and Wales (Boyle, 2008). The stated aim of the Mental Capacity Act is to endow with greater protection to those individual who may lose their mental capacities, particularly in terms of informed consent, patient affairs, advanced decisions and research (Walters, 2009). Moreover, this is a significant part of legislation that deals with the decision making rights to adults who lacks capacity when mental capacity needs to be indomitable prior to the decisions that were made on behalf of another person. In addition with this, it will also clarify the person who can make best decision on the side of the people lacking capacity (Boyle, 2008). In this matter, the issues of personal autonomy and individual freedom of choice are central to the long-term care of elderly people whose self - determination may be restricted by medical problems, functional limitations and physical incapacity. The case of dementia is one of the best situations where this act is suitable.
Dementia is best described by The World Health Organisation (WHO, 2007 cited in Dunne, 2010) as a ‘disease of the brain, typically of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, together with memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. It is learned as well that around 70% of people with dementia who reside in care homes have severe dementia and display ‘significant’ clinical and psychiatric symptoms (Nazarko, 2009). On the other hand, many professionals characterize the illness by the deterioration of cognitive abilities in brain function, while sufferers and carers refer to behavioural problems (Beart, 2007).
The 2005 Act’s main aim, however, is to enable individuals to have their views and values enforced even when they become incapable. This is achieved by giving statutory force to advanced decisions refusing treatment that replace the living wills used under common law before the 2005 Act came into force (Griffith and Tengnah, 2008).
Refusing treatment is discussed in exploring the ethical issue. In book written by Tingle and Cribb (2002, p. 214) which is entitled “Nursing Law and Ethics", has a good interpretation for the ethical issue in treatment refusal. If someone has decided to refuse medical treatment, it should be stop unless one will take a legal action. The question here which is not really vague is the extent of the right to decline treatment the fact that or might be a life saving treatment. In practice, it was often regarded called prima facie evidence when the treatment is carried out.
Moreover, it is believed that there is a disconcerting lack of symmetry between consenting to treatment, on one hand, and flagging life saving treatment, on the other. If the right for autonomy is the moral important in refusing treatment, then it would be possible that the outcome would be death. In the long run, self determination will then disappear if there is no self left in the individual. This sounds quirk however there are many examples that were acceptable to be true. First is those individual who risk their lives and lose them in the end, in the endeavour to help others. There are these people to who chose death rather than to violate some principles or value in life which seems to be more important for then rather than their lives. And the serious one was those people who try to commit suicide. Practical difficulties are being thrown here dealing with those individual who refuse life saving treatment.
However, for the general principle that people were the only one to make own and personal decisions for their life and then learn from their mistakes in the end. Therefore, if refusing treatments turns out to be a mistake, then it is life which will teach oneself about such fault. The consent is the most important here only if the patients fully understand what she or he is consenting to should be respected.
What is the Advance Decision for Treatment Refusal or ADRT? Bennett et al (2008) define ADRT as one component of the Mental Capacity Act (MCA) 2005. The new act offers a statutory mechanism defending the advance – decision process for people specifically those with a long term condition and those resembling end – of – life care.
It is highly necessary to learn and consider the wishes and preferences of an individual in the decision process. As stated by Jones and Jones (2007), advance directives are known to be an expression of choice. Moreover, this colleague added that this is a legally bonding document where wishes of a person are being represented. However, it is often with prior knowledge of such person’s general practitioner to be unsure whether to grant or act on the said advance directive. Before moving forward, let the author discussed and explore first the exact definition given by the Law Commission (1995, cited in Griffith and Tengnah, 2008) of an advanced decision refusing treatment. It was defined as a refusal made by a person aged 18 or over with the necessary capacity of any medical, surgical or dental treatment or other procedure and intended to have effect at any subsequent time when he or she may be without capacity to give or refuse consent.
This has implications for respecting autonomy in the context of health care, specifically in consent to treatment. First, health professionals have an obligation to endeavour to enhance autonomy and facilitate the likelihood of a patient being able to make an autonomous decision. Second, where a patient is unable to make an autonomous decision, it is the duty of the health professional to act in the patient’s best interests. However, even in these situations, an effort should be made to discover any previous preferences of the patient, or current wishes, in order to respect his/her autonomy as far as possible (Ethics – Network, 2010).
Mental capacity assessment needs to be identified. Brody (1988 cited in Hillan, 1993) has identified five factors to identify if an individual is competent enough to take part in a health care decision making. The first thing is the ability of an individual to receive information from his or her surroundings. Moreover, it is also important that the information received by this person is remembered. Third is the capacity to make such decision and give reason to it. In addition with this, it is also vital in identifying such ability. Furthermore, making use of relevant information is also essential in making decision and lastly, one should be also capable of assessing relevant information appropriately. These factors are significant due to the wrong perception about mental capacity especially with those elderly individuals.
On the other hand, health care professionals as well as ordinary individual should understand for the right evaluation that a person lacks capacity must never be based simply on their age (Griffith and Tengnah, 2008) and appearance. Moreover, an assessment should not be just assumption because of one’s condition. And more importantly, it should not be assess in any aspect of a person’s behaviour.
In continuation of advance decision for refusal treatment, it is recognized that there other term for an advance directive which is also known as an advance decision. It is where expression of choice may be verbally or orally expressed. It can also be in other format, whereby a human being clarifies what treatment he or she would choose or would not accept in the future when one lose or diminished the capacity to consent (McHale et al, 200 cited in Jones and Jones, 2007).
Living wills are same with advance directives. This was used by a person who wished to refuse various forms of health care support. However, it is not possible to grant such wishes automatically especially when this wishes was known at the time of treatment was given. The best example in this kind of event is the artificial hydration or resuscitation and blood transfusion. The validity of the said will was often called questions by the health professionals who were asked to implement the wishes of the patient and thus often to be ignore in favour of saving ones life (Law Commission, 1995 cited in Griffith and Tengnah, 2008). In addition with this, it is also said that even the courts were cautious about it’s use. The Trust v Bland  is the article that demonstrated the approach of the common law (Griffith and Tengnah, 2008).
Recently, living wills have been reinstated by the advance decision treatments which transmit the legal force of the Mental Capacity Act 2005. This makes it valid and applicable for a district nurse to grant and give effect of the wishes articulated by a person in the advance decision by law.
Who should assess in making decision that an individual is mentally capacitated or lacking capacity? In day to day decision making, those health care individuals like immediate carer, whether paid or unpaid, is the one who is capable to decide if such client or individual has indispensable mental capacity or not to make his or her own decisions. It is good to remember that capacity is specific to the decisions need to be made or to accomplish. One of the good examples is the capacity for a person to decide what to eat or what to wear. On the other hand, this person does not want to undergo surgery or similar treatment for own sake. In contrast with this, if a medical treatment is being offered, it is simply for the health care professional to carry out the treatment decision making to make sure that the client has the ability and capability to give consent (Dimond, 2009),
In various cases, due to inevitable circumstances, some individuals are making ones advance treatment refusal in the time they are in the state of mental capacity. This has been accepted by The House of the Lord where Lord Goff stated that ‘respect must be given to the patient’s wishes where the patient’s refusal to give his consent has been expressed at an earlier date, before the patients became unconscious or otherwise incapable of communicating it; though in such circumstances, special care may be necessary to ensure that the prior refusal of consent is still properly to be regarded as applicable circumstances which have subsequently occurred (Dimond, 2004b).In congruent with the respect for autonomy, every health care professional all the responsibilities in law to respect the living will or advance refusal of treatment of this be relevant to the present situation of a mentally incapacitated adult and was made at a time when the person did have the necessary mental capacity.
How can a living will of a person be valid and acceptable for the law to be granted? A living will of a person can only be official if the if the information needed is provided. Full name of the being that is making the will should be present along with his or her address. Moreover, name and address of the person’s general practitioner should be written as well. Furthermore, it should also be taken into account whether the advice was sought from health care professionals. More importantly, the signature of the persons writing the will should be present together with the date it was drafted and reviewed. Witness signature should not be forgotten for this will make the will more realistic. With all the reasons of having the living will, a clear statement of the persons wishes may it be general or specific should be supplied including the name, address and telephone number of the nominated person if there is one (British Medical Association (BMA), 1995 cited in Dimond, 2004b).
How should an advance directive be drawn up? At universal law, there are no precise requirements as to the drawing up of a living will. However, there are some important points should be evident for the advance directive to be drawn up. First, the fact that the human being is mentally capable by the time advance decision by the said individual. It follows with what the advance refusal is about to. Moreover, it should be supplied as well that the treatment refusal is intended to be binding at a later time when he or she lacks the capacity to give consent. And the last that is vital in the living will is the witness along with its signature should be present in this directive (Dimond, 2004b).
Everyone has to understand that there are certain decisions which cannot be enforced through an advance decision refusing treatment. Therefore, the Code of Practice to the Mental Capacity (Department for Constitutional Affairs, 2007 cited in Griffith and Tengnah, 2008a) has makes it clear that an advance decision to refuse such treatment is limited. It is not valid and acceptable to ask for illegal such as euthanasia for an assistance to commit suicide.
Moreover, the demand for healthcare and for refusing the food and drink via mouth is restricted. To add more, it is imperfect to refuse the use of measures solely designed to maintain comfort such as providing appropriate pain relief, warmth or shelter. Refusing basic nursing care is unsatisfactorily acceptable which is essential for comfort such as washing, bathing and mouth care.
Advanced decision and the Mental Health Act 1983 was explored. Griffith and Tengnah (2008a) discussed that If a person is incarcerated under the Mental Health Act 1983 by means of a condition that agree to the enforced treatment for the clients or persons mental disorder, then this cannot be overridden by an advanced decision refusing treatment which is enclosed in Mental Capacity Act 2005, section 28.
Moreover, if an individual declares in an advanced decision that they are not after the treatment for mental disorder, then this can be seen by the mental health authorities as an active resistance to admittance towards receiving treatment for mental health unit which could again be overridden by using compulsory detention provisions of the Mental Health Act 1983.
Views of the relatives in advanced decision (Griffith and Tengnah, 2008a). Reliance of the next kin or relatives in the consent and refusal of a client in emergency cases is neither acceptable nor valid. This was stated by Lord Donaldson warning against the trust of nearest relative when it comes to treatment of an individual lacking mental capacity because they have no legal rights in giving consent or refuse with the treatment.
Existence of an advanced decision refusing treatment should catch the attention of health care professionals if needed. The sign can be an instrument like bracelet or carry a card which shows and exhibit that an advanced decision is existing. One good example here is the girl who had tattooed ‘do not resuscitate’ on her arm to be able to warn health care professionals of her advanced decision. Mental Capacity Act 2005 contains the code of Practice that recommends a copy of the advanced decision was left with the person’s general practitioner and relatives (Departmenet of Constitutional Affairs, 2007 cited in Griffith and Tengnah, 2008a).
Therefore, it is central for those district nurses and health care practitioner that an advanced decision of the patient is possibly present. The district nurses have to make sensible efforts to find out the details of the document if the existence of advanced decision had made aware to exist. Moreover, a discussion about the issue with the patient’s relatives as well as general practitioner might be necessary in searching for the patients records. Collecting necessary details and records about the patients advanced decisions whether it was made in oral or written form, , the district nurse will stll need to consider whether it is a valid and applicable decision surrounded n by the Mental Capacity Act, 2005. In the case that the advanced decision is valid and applicable, the district nurse will be convince and therefore act in accordance with the clients wishes.
Privacy and dignity is also important in person rejecting treatment. The National Essence of Care (Department of Health (DH), 2001a cited in Birrell,2006) summarized a benchmarking process to help practitioner adopt a structured approach to sharing and comparing practice. This proposed standard will identify seven factors relating to privacy and dignity against which health care team can identify point of reference for practice in dealing with elderly and demented personality. The first factor is the attitude and behavior where an individuals will feel being important all the time. One can experience care in an environment that actively encompasses individual values, beliefs and personal relationships is the target in the next factor which is personal world and personal identity. Personal boundaries and space is the third important factor to whom a ptient can have personal space that is actively promoted by the healthcare team. Moreover, communication between a health care staff and patients takes place in a manner which both respect their individuality is significant. Privacy of patient - confidentiality of patient information is the fifth important factor. Here, the patient information is shared to enable care especially with ones consent. It will follows with privacy, dignity and modesty factor where care is actively promoted with privacy and dignity, as well as protecting patients modesty. The last important aspect is the availability of an are for complete privacy where both individual can access an area that safely provides privacy.
Beneficence is the next principle in relation to treatment refusal. Network – Ethics define the principle of beneficence highlights the moral significance of doing good to others. When a patient is unable to make an autonomous, choice the health professional has a duty of beneficence. Beneficence is typically well thought-out to rely on an intentional view of what would be best for the patient whereas respect for autonomy identifies what the patient subjectively considers to be in his/her best interests.
It was discussed earlier that Mental Capacity Act (MCA) 2005 expressed a constitutional condition for the statutory bodies to look for an advice from an independent advocate during the decision making on behalf of those who can not make them by themselves. This will be a good help or assistance for these individual to help decide as well as decide if they really wants to continue on refusing treatment or ready to give consent for medical treatment. Let the writer figure out in a deeper understanding the definition of advocacy.
The word advocacy is derived from the Latin advocatus which means that an individual is summoned to give evidence (Gates, 1995 cited in Woodrow, 1997). Thus, bringing up the question of who is the summoner as well as the evidence and the extent of feelings that can be included into the relationship. However, it is practically known that the term advocacy has been widely used in health care and nursing, however, the exact meaning remains unclear and exposed to interpretation (Woodrow, 1997).
According to Ashurst (2000), whom identify advocacy in a social care perspective that speaks about the promotion and protection of each resident’s welfare and privileges. It is about the partnership between two people which is frequently a volunteer and a person who wants some help to surmount obscurity as a consequence of a physical or learning disability. In health care, the Code of Professional Conduct (UKCC, 1992 cited in McNally, 1995) recognises that nurses promote the independence' of their clients and at the same time, working cooperatively with clients and their relatives and carers.
It is important to know and accept that advocacy is vital to the nurse's role (McNally, 1995). Therefore, giving empowerment to those who needs support and assist whould be the guiding principle (McNally, 1995). Gadow (1979 cited in McNally, 1995) imply that the key role of the nurse is to help out in the dependable self - determination with the client who characterizes his / her own 'best interests'. However, Woodrow (1997) explains that nursing advocacy is a role that has been poorly defined, and the term has been adopted from a profession outside health care which is perhaps not wholly compatible. Moreover, he also added that advocacy is a role that the UKCC expects nurses to adopt, even though the concept has not been clearly defined. Elderly and demented people are somehow needs some advocacy to be able to fulfill ones need which sometimes deminished due to their condition. Knowing that the principle of nurse advocacy is deserving such praise, the practice is still troubled with various potential conflict which is unavoidable sometimes. Meanwhile, this conflict may cause severe inconvenience for a number of nurse advocates, until to the point that one may lose such employment. Woodrow (1997) explained that the 'hows' of advocacy are not always clear in practice. However, simple philosophies of ‘being with’ and ‘being for’ the these individual is always present.
Ashurst (2000) also believe that an advocate should possess the following to be able to assist an indiviual. First, an advocate should protect the rights and interest of the resident. To befriend the person for whom they are acting is the next important task an adocate should learn. And lastly, an advocate should provide support in breaking down the obstacles that was preventing the person from leading a full and improved lifestyle.
As stated by Richardson (2001), anything done for and any decisions made on behalf of a person lacking capacity should be done or made in the best interests of an individual. The Law Commission (1995 cited in Richardson, 2005) has proposed a flexible checklist of areas that needs to be judge in order to help decide in discovering a person’s best interests. First, the ascertainable past and present wishes and feelings of the person concerned and the factors that the person would consider if able to do so should be taken into consideration. Moreover, there is a need to encourage the person to participate or to improve one’s ability to take part as fully as possible in whatever thing done for and any decision disturbing him or her. The views of people who know the person’s wishes, feelings and ones best interests are important factor to look at. Any action or decision can also be achieved in a manner not as much of restrictive on the person’s freedom of action. Moreover, if there is a reasonable expectation in the foreseeable future of the person recovering in his or her capacity to make such decision. Furthermore, the need to be fulfilled that the requests of the person without capacity were not the result of unjustified influence.
Consent is the first thing to obtain before starting any medical treatment with the patient. This is vital for both health care practitioner and patient to prevent legal harm in both parties. Obtaining consent to treatment has several important functions to consider. Patients wishes is entitled to accurate, relevant and understandable explanations to be able to identify ones health condition, the implications, things to do and the treatment that would likely to be involved.
Respecting patients and clients autonomy is critical in getting hold of consent with regards to the right to decide whether or not to undergo any health care intervention even if the denial may result to death to them, unless a court of law orders to the contrary. When acquiring valid consent, one has to be sure that it is given by a legally competent person or individual. Moreover, it should be given voluntarily and lastly it should be informed.
The Mental Capacity Act 2005 permits an adult to refuse medical treatment, including life sustaining treatment, when they are incapable through the use of advanced decisions to refuse treatment. The 2005 Act gives legal right to these advanced decisions and they can be made orally or in writing. Where a district nurse is aware of an applicable and valid advanced decision they must offer effect to the incapable adult’s wishes as if the person had capacity at that time and was refusing medical treatment.
It is the right for autonomy of a patient to refuse treatment and therefore, health care professional should give appropriate respect to this. Patient’s preference should be follow even to the extent of causing harm or likely to death. However, there are some limitations to look at where the right for autonomy cannot be exercise.
Health care professional could give more time and effort and providing appropriate informed consent to patient. This would help the patient understand and get prepared with all the necessary treatment might need to be involved.
Advocacy for individuals refusing treatment should be encouraged. This would help the individual understand and appreciate all the available medical treatment. This would also help the immediate carer or individual to identify and recognize the needs and feelings of patients for providing a more quality care as well as enhancing the quality of life of ill individuals.