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Another issue relates to the monitoring process that should be in place to insure that the informed consent process is adequate and the research is conducted as approved by the Institutional Review Board. Another active ethical issue in research relates to conflict of interest when physicians may gain personally - or their institution - based on their participation in research, particularly therapeutic trials.
Inadequatelydisclosed conflicts of interest threaten to undermine the trust that the public has that the research is being conducted for the benefit of society and not for the personal or organizational financial betterment of researchers.
Issues also relate to the control of the information collected in the research project. For example, is it ethical for drug companies to suppress negative studies? Other ethical issues in research design that are under active consideration at the moment, include determining when use of a placebo is inappropriate.
Research practice dictates that participants should be offered standard therapy as an option. Donepezil has become in many people's minds the standard of practice for symptomatic improvement of cognition in AD. Most people do not believe that we are at. In many research protocols, subjects arc asked to donate tissues for analysis. For example, it is common in clinical trials to collect, a blood specimen to allow determination of genotypes, such as Apo E4. The hope is to determine whether the genotypes in any way relate to responsiveness to the medication.
However, if the affected person grants permission to obtain biological tissue, questions are raised as to how long the tissue can be stored, whether it can be used for analysis of other disease markers, and who can have access to this information. In addition to opportunities to participate in research, individuals in the mid-stage of the disease are often involved in a great variety of services in the health care system.
Managed care in the United States has changed the financial incentives for physicians and organizations providing health services. For example, in capitated managed care, providers are at risk for excessive use of services. Patients with dementia may be at risk of not being granted adequate access to services in a health care environment in which they threaten to consume more that average resources. The ethics of managed care has attracted considerable professional and public attention. For example, early attempts to stop physicians from sharing information about other therapeutic options not included in the patient's plan with so-called gag rules were judged by most to be unethical.
As the disease progresses, patients with dementia may become unable to make any decisions, and, in fact, unable to communicate with their loved ones and care providers. They often need placement in long-term residential care facilities. A variety of ethical issues emerges in this context. As the dementia progresses from severe to profound, many consider it. In this context, ethical discussions emerge as to what, kinds of interventions are effective and appropriate in the latter stage of the disease.
Should we ever place a feeding tube in a severely demented patient? Do antibiotics alter the course of patients who are terminally demented and have developed infections? Finally, there are active discussions in some countries concerning the role of physician-assisted suicide and euthanasia in dementia care.
In the Netherlands, a. Quite a number of individuals in the Netherlands have also filled out, advanced directivesasking doctors to kill them when they reach a certain severity of dementia. Clearly, we need to have appropriate forms of health care available to patients dying with dementia.
Many hospice programs provide an appropriate model for such care. The options for endof-life care should focus more on the quality of life than prolonging life. The spiritual aspects of life increasingly become important to many. Secular bioethics is often not comfortable when narrower religious or broader spiritual value issues are raised.
Many changes are occurring in the clinical and research environment involving patients with dementia. As mentioned above, we will have a larger number of individuals affected by dementia because of the graying of our population. Moreover, because of population mobility, we will be called upon to involve increasingly cultural diverse individuals in our practices and research.
Attending to the differences in ethical belief systems in different cultures will be even more important in the future than it is today. In some cultures, the principle of autonomy is not as dominant as in the United States and Northern Europe. In general, even in these Western countries, we are questioning whether such a strong focus on individual rights is appropriate as we recognize that attending to the health needs of the public and our communities requires reconsideration of the relationships that physicians have with individual patients.
As our health care systems continue to evolve to better integrated systems in which acute and long-term care will be coordinated in a smoother continuum, a variety of ethical issues will emerge. Many of them will have to do with the use of integrated clinical and financial information systems. As computers and information systems are increasingly involved in the care of patients with dementia, confidentiality will be an increasing issue. Moreover, as computers begin to actually play a role in supporting care, accountability for therapeutic decisions may become less clear.
As the number of individuals with dementia increases and health care resources are increasingly stressed, the level of support given to patients with dementia will be examined. It remains to be seen how expensive therapies to treat dementia will be prioritized when, for example, the deleterious effects of environmental pollution on the health of people of all ages continue to grow.
At a personal and cultural level, dementia will challenge us as the disease of the millennium and a particularly postmodern one at that. National Center for Biotechnology Information , U. Journal List Dialogues Clin Neurosci v. This is an open-access article distributed under the terms of the Creative Commons Attribution License http: Abstract The growing number of individuals affected by dementia will intensify the ethical issues that emerge in clinical practice and research, issues early in disease relate to genetic testing, use of medications in mildly affected persons, and diagnostic disclosure.
Approaches in ethics The discipline of bioethics is only a little over 25 years old. Ethical issues in early disease Before we begin our discussion of ethical issues in persons who have been labeled with a diagnosis of dementia, we need to consider those without manifest disease, ie, people with subtle degrees of intellectual impairment who might be at risk for developing frank dementia such as AD in the future.
Mid-stage issues In order for an advance directive to activate, the community needs to determine that the individual is no longer competent to make decisions and that the surrogate decision-maker needs to become more active. End-stage ethical issues As the disease progresses, patients with dementia may become unable to make any decisions, and, in fact, unable to communicate with their loved ones and care providers.
This e-book exhibits pros operating in the neighborhood, hospices, hospitals and care houses how one can let contributors to direct their very own aid and feature greatest selection and keep watch over in the direction of the tip in their lives. While drawing on principles in the UK and USA, it emphasizes that the ethical principles should be interpreted in the local Chinese cultural context, where the concept of self may differ from the West, in being more of a relational one [ 23 ], and where the role of family in decision making may be more important than in Western cultures [ 24 ]. We need to understand why there is such inertia in amending the ordinances that govern dying in residential care homes as well as resuscitation in ambulances. The ethical principles relating to end of life care may be considered in the context of those in geriatrics and long term care, which in turn are basic principles of medical ethics. It states that there is no ethical difference between withholding and withdrawing. Kwok T, Twinn S, Yan E The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments. Moreover, it is uncertain if their advanced directives will be honored in the years ahead.
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Receive exclusive offers and updates from Oxford Academic. Related articles in Google Scholar. Citing articles via Google Scholar. Latest Most Read Most Cited Developing a toolkit for the assessment and monitoring of musculoskeletal ageing. A systematic review, meta-analysis and meta-regression of the prevalence of protein-energy malnutrition: Furthermore, knowledge of and provision of palliative care services were limited. The topic seldom appear in the media; yet there have been occurrences of older people suffering from debilitating chronic diseases committing suicide, as well as requests to doctors to administer an injection to end life and suffering.
This may be a reflection of inadequate care provision, thereby raising the issue of possible inequity of healthcare resource prioritization in the context of limitation.
Prioritization of services in the context of resource limitation has not been acknowledged explicitly, or implicitly denied, so that these issues have not been debated either by professionals or the lay public. Physician assisted suicide PAS: On the other hand, there is another practice that is part of the same debate — physician-assisted suicides PAS.
It is defined as means of ending life prescribed by a doctor to the patient usually in the form of a lethal dose of drugs, to which the patient has autonomy over taking. The secretary for justice must approve such prosecutions, although there is no publicly available policy guidance regarding this approval process and criteria.
However, while PAS has been vigorously debated in recent years around the world, it has not been mentioned much among healthcare professionals in Hong Kong, although the media reported on PAS proposals in other countries. For example in in the UK, Lord Falconer proposed the Assisted Dying Bill, which if passed into law would allow adults who are expected to live six months or less to be provided with assistance to end their lives, when they are fully aware of all the palliative care options and make a fully informed decision in the presence of two doctors.
The cardinal medical ethical principle underpinning the proposal is the respect for autonomy [ 8 ]. Eminent doctors argued for both sides, the debates being widely reported in medical journals. Although it was supported by the majority of peers, it fell due to lack of time before reaching the House of Commons.
Alzheimer disease afflicts more than twelve million people worldwide, and its incidence is increasing at a staggering rate. People with the disorder are living. Ethical Foundations of Palliative Care for Alzheimer. Patients. Edited by Ruth B. Purtilo and Henk A.M.J. ten Have. Johns Hopkins Press: Baltimore,
However the Bill will have a second reading debate in the House of Commons on 11th September It is unclear why there is little discussion among healthcare professionals or the public about euthanasia or PAS in Hong Kong, in contrast to other countries. Possible reasons include avoidance of talking about dying, and the implied family obligation to take care of the sick or senile relatives, a feature of the Chinese culture, low level of awareness of medical ethical principles, and distorted perceptions of the curable nature of illnesses with overemphasis on technology and pharmacological solutions.
Advance directives and other legal issues: After a long gestation period, Advance Directives have been introduced but not promoted mainly in public hospitals. At the time of writing, there continues to be no statute or case law in Hong Kong governing the legal status Advance Directives. An Advance Directive is generally considered valid unless it can be challenged on the grounds of incapacity or undue influence.
It should be noted that legislation on Advance Directives has been introduced in other countries such as the US, Canada, England, Australia, and Singapore. The report recommended that the Government should work with other stakeholders such as the Medical Council and Hospital Authority to promote public awareness of advance directives, and should review the situation of whether or not to legislate once the community has become familiar with the concept. Generally from the consultation, there did not appear to be a clear consensus among the respondents or public support for promoting the concept of advance directives by legislative means in Hong Kong [ 10 ].
The Hospital Authority took up Advance Directives from July onwards and issued a specific guidance on Advance Directives for its clinicians [ 11 ]. A model form was designed, based on the one developed by the Law Reform Commission, which allowed patients to choose or decline various types of life-sustaining treatment under three specific conditions: The Hospital Authority has designed on form for Advance Directives, which covers the following three categories of treatment: The patient retains the option to change choices at a future date.
The information is entered into the electronic medical record, and accessible by staff responsible for care of the patient. However the form is not legally binding, and in practice, not many patients have been asked to complete the form. There are no guidelines that require completion of this form. Many professionals, patients and carers are not aware of this form. Requests to complete this form by members of the public are met with uncertainty of what steps to take to make an advance directive, since the form requires a physician as a witness and is only available in public hospitals.
The wishes of the patient expressed in the Advance Directives may not necessarily be respected by the professionals providing care, or overridden by family members because it may be formulated without much discussion and deliberation. In some cases certain laws and regulations may prevent wishes expressed by advance directives to be implemented. There is no provision in the ordinance regarding dying patients who do not wish to be resuscitated.
This runs against the medical ethical principles of autonomy and futility of treatment. Currently many residents living in such homes are under the care of Hospital Authority Geriatric outreach teams, who are able to provide much of the end of life care, even for those who expressed a wish to die in the care home. However, effectively the law is depriving residents of old age homes and their relatives of the choice in the place of dying, as well as depriving them of dignity and creating much discomfort as well as distress in their relatives during the process of dying.
We suggest that an amendment of the above ordinances would enable such wishes to be respected, especially given the legally ambiguous status of Advance Directives in Hong Kong at this point in time. To support this notion, an advance care planning programme was developed for the local socio-cultural context. The programme was entitled Let Me Talk that highlights the importance of frank communication and included components to elicit individual personal values underpinning end-of-life care wishes [ 14 ].
The programme was initially tested among old age home residents with multiple morbidity. Although they generally perceived the medical paternalistic culture, the programme significantly empowered the residents to indicate their end-of-life care wishes and the commonest preferred goal of care was comfort care. Establishment of a dedicated pathway to allow the implementation of advance care planning has been piloted and hopefully can contribute to improving the quality of the dying process.
While it is possible to engage frail older people living in residential care homes to implement advance care planning [ 14 ], much education of staff working in long term care settings needs to be carried out. A recent survey showed that among the staff working in these homes, knowledge gaps exist in the areas of mortality relating to chronic diseases, pain and use of analgesics, feeding tubes, dysphagia, sputum management, and attitudes towards end of life care issues.
Staff highlighted lack of knowledge in dealing with refusal to eat, management of feeding tubes, managing the dying process, advance directives and advance care planning [ 15 ]. The medical ethics of end of life care for those who have dementia have largely been neglected, since few would discuss advance directives early on in the disease. It is uncertain what role medical ethical principles play in the making of decisions regarding care for patients in the late stage of dementia. A major ethical dilemma in the care of people with dementia in Hong Kong is the widespread use of tube feeding for poor feeding and aspiration risk at the advanced stage of dementia.
While it is clear that most non-demented older people do not wish to have tube feeding when they have advanced disease [ 12 ], and that tube feeding is poorly tolerated by older people with dementia, tube feeding is routinely used and enforced by physical restraints in hospitals and nursing homes in Hong Kong. The predominant view by health professionals and the lay public in Hong Kong is that life-sustaining treatments should be standard practice, unless they are refused by the patients. As people with dementia are mentally incapable, they cannot refuse life-sustaining treatments.
The beneficence and futility principles do not necessarily support the withholding or withdrawal of tube feeding in advanced dementia if one believes that preservation of life per se is of paramount importance. A counter-argument against tube feeding in advanced dementia is the lack of evidence that it prolongs life [ 17 , 18 ]. Careful hand feeding has been suggested to be an effective alternative [ 19 ].
But few would dismiss tube feeding as a life saving measure of the last resort even if they accept that the practice is not evidence based. Moreover, careful hand feeding is often dismissed by health professionals as impractical because of its resource implication and the risks of complaints and litigation.
The limitations of the contemporary focus on autonomy in medical ethics in the care of people with dementia have been recognized. Some have proposed to consider the personhood of people with dementia within the social context of the individuals. When one considers life sustaining interventions, beneficence should be the guiding principle, and the burden experienced by the person with dementia should be taken seriously.
The negative responses to the intervention e. Without this alternative vision of personhood, it is not almost impossible to deliver palliative care for people with advanced dementia.
Alongside public education in palliative care in Hong Kong, there has been some shift in the public and professional opinion on the use of tube feeding in advanced dementia. But the shift has not been enough to ensure a consensus among the health professionals and the families in the great majority of cases. In reality, it only takes one person in either party to shift the decision towards tube feeding. Therefore, it is clear that much more work needs to be done to shift the emphasis on the preservation of life to the preservation of quality of life and personhood of people with incurable diseases in Hong Kong.