Legal and Ethical Issues on Patients with Dementia - Essay Example

Legal and Ethical Issues on Patients with Dementia Dementia (from Latin demens) is progressive decline in brain's cognitive function due to damage or disease in the brain beyond what might be expected from normal aging. Particularly affected areas may be memory, attention, language and problem solving, although particularly in the later stages of the condition, affected persons may be confused in time (not knowing what day, week, month or year it is), place (not knowing where they are) and person (not knowing who they are) (Wikipedia, 2005). As the symptoms of Dementia further develop, the patient will begin to lose his mentalfunctions. Legal issues then arise concerning his capacity to make a decision. First, there may be doubts about whether a patient is legally capable to decide about a particular medical procedure, especially if the patient refuses to go-ahead with a procedure that the doctor recommends. Second, if the patient is not capable, who should make the decision This will depend on whether the patient has provided in advance for his or her own decision making; for example, by a lasting power of attorney (medical treatment) or by appointing an agent or a lasting guardian to make decisions when the patient is no longer able to do so. In some countries, a relative or caregiver is allowed to consent in certain circumstances (Skene, 2005). Ethical issues Ethical issues begin immediately to arise at the time of diagnosis and may include whether to let the patients know the diagnosis. Giving a diagnosis can enable patients and families to plan for disability (including application for disability for those who are still employed), help ascertain patients' preferences about treatment and research participation, and facilitate support from family and community organisations (Weiner, 2004). However, this is best done in a supportive setting with adequate time to answer questions and deal with the patient's and family's emotional reaction (Post and Whitehouse, 1995). Many of the decision may include considerations of treatment, course of illness, the nature of the illness, and the availability of various options of support for the patient and family. Discussions of each person's values and preferences enable appropriate decision making in clinical situations that might arise later, such as the use of a feeding tube or resuscitative measures. On the other hand, conveying a definite diagnosis or discussing these issues may result in substantial uneasiness for patients and families alike, and such issues may need to be raised slowly over the course of continued visits--or be raised only with the family members responsible for patients' ongoing care (Weiner, 2004). Decision-making capacity of the patient changes as the disease progresses. The capability of the patient with dementia to decide for himself should be respected in principle. Any evaluation of the patient must be made of both his capacities and incapabilities. A medically important area of decision making is that of accepting treatment with a cognitive enhancer or neuroprotective agent. These medications currently provide temporary slowing of progression and, in some cases, minimal cognitive improvement however they do not affect long-term outcome of the disease process. Considering the present level of effectiveness of these medications, it is suitable for patients to decide the desirability of taking them based on personal values or medication side effects (Weiner, 2004). As dementing illnesses progresses further, decisions may need to be made by proxy decision-makers. In general, proxy decision-makers should be people who have knowledge and respect for the patient's values and opinions. When possible, proxy decision-makers should make decisions based on the patient's view, but there are times when decisions must be based on what the proxy decision-maker regards as best (Weiner, 2004). It is advantageous if the proxy decision-makers are free of conflicts of interest, but they are often spouses or adult children who may stand to benefit from withholding certain types of care or advocating others. In some countries, laws concerning medical powers of attorney/durable powers of attorney for health care permit physicians not to follow the proxy decision-maker's decisions if the physician believes that the proxy is not acting in the patient's interests (Weiner, 2004). Another ethical issue to be made is whether to forgo artificial nutrition or not. Artificial nutrition has not been proven to prolong life or to improve its quality-but it has not been shown to cause great harms, either. Some people thought of artificial feeding as something like "chicken soup," a potent symbol of caring. Others see it as "depending on a machine" and therefore find it fully disgusting. The more than 50 appellate court cases make it clear that the courts support good decision-making practices with regard to whether artificial feeding should be forgone. Thus, it is quite legitimate to develop programs to support good decision making by families and clinicians. However, the uncertainty and divisiveness over whether artificial nutrition is or is not part of a generally good end-of-life course for dementia patients makes it improbable that a care decision should intend to attain low or high rates of use (Lynn and Schuster, 2005). Another ethical issue which lead to discomfort is the amount to which families should be expected to "care for their own." How much burden is it sensible to anticipate spouses, children, and others to take on Some feel that there is no sensible limit, except for hopeless impossibility of doing more. Others feel that society should protect people from having to deprive themselves or lose out on the chance to live their own life because of the dementing illness of a family member (Lynn and Schuster, 2005). Again, within the bounds of societal support, families have considerable judgment, and good decision making is usually accepted as valuable. However, the lack of societal consensus means that institutions should avoid actually aiming to protect families or to impose more burdens upon them. In general, quality improvement by caregiving teams works best if their aim is broadly held to be a good thing, and venturing into areas where there are strong and contentious ethical issues should be done with substantial caution. Enabling patients (in advance) or families (now) to understand and act on their options usually is not contentious (Lynn and Schuster, 2005). Legal issues People with dementia experience a decline in the ability to reason and make judgements thereby affecting their ability to make informed decisions. As such, they provide a range of contexts in which to consider the effects of the use of the legal system. As people with dementia are a heterogeneous group with respect to cognitive capacity, they represent the full range of conditions likely to be manifested by people using the legal system (Scotland Government, 2002). The legal system gives the people the opportunity to make legal decisions prior to a diagnosis, or in the early stages of the illness, whilst still cognitively intact. As the impairment increases, the system should still offer empowering opportunities for the person to undertake legal interventions. However, at the stage where the person is deemed incapable, legal interventions then become more paternalistic than empowering for the person with dementia (qtd. From Scotland Government, 2002). The experiences of people with dementia are clearly illustrative of the issues arising for the legal system where cognitive impairment and associated decision making takes place along a continuum of ability (Scotland Government, 2002). One subject that needs to be addressed routinely and early is testamentary capacity: the ability to make and execute a will. The legal standard for this function is that individuals must know--at the time they sign or execute the will--the extent of their property, their blood relations, and the general nature of their material and other assets. They must also have enough capability to make a sensible judgement based on this knowledge. For this reason, people with early-stage dementing illnesses should be encouraged to review the status of their wills. Creating an inventory of all assets and liabilities; locating deeds, insurance policies, bank and brokerage accounts; and establishing the ownership of any property or property rights are also important (Weiner, 2004). Formal assessment of competence may be needed to determine the patient's ability to enter into a contract. This is determined by whether an individual comprehends the nature of an exact transaction and its implications. Marriage, for example, is a contractual relationship, and there are several well-known instances in which one of the marital partners did not appear to fully understand the situation due to a dementing illness. Marriage contracts may be invalid if one of the partners did not comprehend the nature of the marriage ceremony or understand the obligations and responsibilities of the marriage (Weiner, 2004). Durable powers of attorney should be considered for health care (also known as medical power of attorney) or to manage property. With an appropriate durable power of attorney, a family member can consent to medical care or manage a patient's property should the patient lose competence in either of these areas, however, the patient's wishes must be followed if know (Weiner, 2004). Guardianship may be sensible under some circumstances. To become a guardian, applicants must demonstrate the inability of individuals to feed, clothe and shelter themselves; to care for their own physical health; and to manage their own property or financial affairs. A person's guardian can consent to medical treatment for the patient or control the patient's financial matters without their consent (Weiner, 2004). Professional guidelines Doctors usually seek a patient's consent for a medical procedure before it is undertaken. When a patient has impaired mental capacity, the doctor may be uncertain whether the patient is competent to consent and decide that consent must be obtained from someone else. In some countries, legislation gives legal authority to people appointed by the patient, or by the state; or a relative or care provider, to consent (or refuse) on behalf of the patient (Skene, 2002). All medical procedures that involve touching a patient are potentially a trespass or battery (commonly known as assault) unless done with legal authority. The general legal authority is the patient's consent. (There are other legal grounds for procedures without consent. Courts may order medical procedures, such as compulsory testing of blood or tissue for forensic purposes. And in an emergency, doctors may undertake procedures necessary to save a patient's life or to avoid an imminent and serious threat to a patient's life without obtaining consent) (Skene, 2002). Before obtaining a patient's consent for a medical procedure, doctors must explain what is involved, especially mentioning material risks to the patient. A risk is material if it is one that the doctor knows, or should know, an ordinary patient in this patient's position, or this particular patient, would be likely to consider significant. There is an objective element, judged by reference to an ordinary patient; and subjective, judged by reference to the particular patient (Skene, 2002). When treating a patient with potential dementia, or impaired cognitive capacity, it is the doctor's responsibility to assess whether the patient is legally competent to understand what is involved and to consent to it (or refuse to it). A patient is competent to consent to - or refuse - if the patient understands in broad terms (Skene, 2002): what is wrong with the patient the options for treatment, including what the doctor recommends the patient's opportunity to ask questions the patient's right to refuse. Whether a patient is competent to consent will depend partly on the nature of the procedure. Patients may have the capacity to consent to relatively minor procedures (such as a routine examination or vaccination) but not to others, such as surgery (Skene, 2002). These principles may be illustrated by the following case study: Thelma, 85 years of age, appears demented. She is in a nursing home. Her daughter Louise, 40 years of age, visits regularly. There are no other relatives. Thelma has a bowel obstruction and her doctor has advised surgery (Skene, 2002). The doctor must first assess whether Thelma is competent to consent to the surgery herself. Even if a patient has impaired cognitive capacity, there is a presumption that they can consent unless that is not the case. To consent, Thelma would need to understand that she has an obstruction in the bowel and that she needs to have surgery to have it removed. Even if she cannot understand the risks of surgery, she can still legally consent if she understands the nature of the surgery in broad terms (Skene, 2002). If the doctor believes that Thelma is capable to make a consent, then consent must be obtained from someone else (unless it is an emergency, when surgery can be done in life threatening circumstances without consent; or Thelma has effectively refused surgery in advance by a statutory refusal of treatment certificate). Thelma falls into the category of a patient with a long term disability. She is not likely to recover enough competence to make her own decisions due to her dementia. Unless Thelma has appointed her own surrogate decision maker, or such a person has been appointed by a guardianship tribunal, the suitable person will be her daughter Louise - the nearest adult relative sensibly available and willing and capable to decide. If Louise will not consent to the surgery and no other relative is available to consent, the doctor could, if the law allows, appointing someone else to consent (Skene, 2002). Recommendation and conclusion A diagnosis of dementia often raises some important legal and financial issues for the future. The person with dementia should be involved in these decisions as long as he or she is able and willing to be involved (Havens, 2005). For an individual with dementia, advance planning is necessary to fulfilling end-of-life requests. The physicians and care team play a significant role in initiating dialogue with the individual and family about these desires. Although dementia could extend up to 20 years, it is still a terminal disease. Ideally, the physician and care team should discuss values and preferences related to death and dying with all older persons on a regular basis (Alzhiemer's association, 1997). Early discussion will help to clarify the patient's will before the inception of dementia. Individuals have an ethical and lawful right to limit or forgo medical or life sustaining treatment (including the use of artificial feeding, mechanical ventilators, cardiopulmonary resuscitation, antibiotics, dialysis and other invasive technologies). Individuals who lack decision-making capacity have the right to have surrogates use advance directives to assure this right. The two common forms of advance directives are a living will and a durable power of attorney for health care. A living will states the individual's choices for future medical care decisions. The durable power of attorney allows the individual to designate a surrogate, usually a trusted family member, to make specific treatment decisions for them (Alzhiemer's association, 1997). The surrogate should make decisions consistent with what they think the individual's wishes would have been. In the absence of written will, care providers should try to learn about the patient's desires from family members as a basis for making their decisions. However, issues regarding the use or withdrawal of artificial nutrition and hydration vary from different countries. If there is an identified surrogate, families should be contacted and involved in the decision-making process (Alzhiemer's association, 1997). Furthermore, care providers should work intimately with the family, in cases where an alternate judgement must be made, to understand advance orders. If there is an insufficient knowledge about the individual, care providers should base a decision on what they feel is in the best interest for that individual. If necessary, the importance of respecting the individual's wishes should be clarified for the family. Clinical ethics consultants or the facility's ethics committee may offer assistance in facilitating consensus. An individual's right to refuse or withdraw any treatment, including treatment for life-threatening illness (infections, hemorrhaging, heart attacks, etc.), is not the same as assisted suicide or euthanasia. In fact, aggressive medical treatment may seem torturous to the individual because of his or her lack of orientation to the surroundings and lack of understanding of the intentions of care providers (Alzhiemer's association, 1997). Reference List Alzheimer's Association, (1997). Fact sheet: Issues in Death and Dying. Alzhiemer's Association. Available from: [Dec. 29, 2005]. Havens, Lila, (2005). Legal issues and dementia [online]. Available from: [Dec. 29, 2005]. Lynn, Joanne and Janice Lynch Schuster, (2005). Improving Care for the End of Life : A Sourcebook for Health Care Managers and Clinicians. Oxford University Press. Available from :< http://www.mywhatever.com/cifwriter/content/66/4389.html> [Dec. 29, 2005]. Post SG, Whitehouse PJ (1995), Fairhill guidelines on the ethics of the care of people with Alzheimer's disease: a clinical summary. Center for Biomedical Ethics, Case Western Reserve University and the Alzheimer's Association. J Am Geriatr Soc 43(12):1423-1429 Skene, Loane, (2002). Dementia - Legal issues in consent. The Royal Australian College Of General Practitioners. Available from: [Dec. 25, 2005]. Scotland Government, (2002). THE CHARACTERISTICS OF PEOPLE WITH DEMENTIA WHO ARE USERS AND NON-USERS OF THE LEGAL SYSTEM: A FEASIBILITY STUDY. Scotland government. Available from: [Dec. 29, 2005]. Weiner, Myron F. Weiner, M.D. (2004). Legal and Ethical Issues for Patients With Dementia and Their Families. Geriatric Times January/February 2004 Vol. V Issue 1 Available from: [Dec. 29, 2005]. Wikipedia, (2005). Dementia [online]. Wikimedia. Available from: [Dec. 29, 2005}. Read More