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ATTITUDES, ETHICS, AND LEGAL TOPICS IN GERONTOLOGY

PEARLS

❖ The shift in modern medicine from a paternalistic role toward giving the patient more responsibility in decision making may be threatening to older adults who are more comfortable with traditional roles.

❖ Rehabilitation therapists should practice beneficence in medical decision making and not be a neutral party. They should encourage acceptance of an appropriate treatment, being careful not to coerce or deceive the patient.

❖ Ombudsmen funded by Medicare are available to provide information regarding patient rights and protection in long-term care facilities.

❖ In informed consent, therapists are obliged to provide information in a language a patient can understand regarding risks, benefits, and alternate treatment options, except when the therapist exercises therapeutic privilege (eg, withdrawing information that the therapist feels will cause the patient direct harm as a result of knowledge).

❖ The common types of elder maltreatment include caregiver and self-neglect, emotional and psychological abuse, fiduciary exploitation, and physical abuse.

❖ Advanced directives, such as a living will, are documented desires of medical management used to ward off unwarranted care and promote death with dignity.

❖ The American Geriatric Society opposes active euthanasia and feels that while lethal injections may be appropriate for a few patients suffering from unrelenting pain, there is too much at risk for abuse for frail, disabled, and economically disadvantaged older adults.

In the past, the medical treatment of a patient was primarily humanistic due to the paucity of scientific knowledge. Patients were treated spiritually rather than the disease being treated. Given the rapid advances in medical science, there is a great concern that spiritual treatment or meeting the patient’s emotional needs will take a back seat to more technologically oriented treatments.¹ As this concern grows, the ability to meet the emotional needs of older adults has also diminished, which has been a natural consequence of the increased specialization in medical technology.¹ An older person with multiple problems may have several different physicians and therapists to care for his or her different needs. With the demise of the general practitioner, the intimate relationship between clinician and patient likewise ceases.

In addition to technological changes, attitudes are changing, and a concern for patients’ “rights” is growing. The Miranda decision,² which required that people accused of a crime be informed of their rights under the law, has dramatically changed the legal institution. Likewise, an analogous development is occurring in the health care system with more of an emphasis placed on informing patients of their rights. Medicine is shifting away from a paternalistic role to giving the patient more responsibility in decision making, and this may be threatening, especially to older adults who may be more comfortable with traditional roles.³ This chapter discusses many controversial issues ranging from allocation of resources to patient rights, death, and abuse.

The United States has focused attention on the rising costs of health care coincident with the increasing age of the population. Arguments have been made to overtly ration care to older persons; however, general acceptance of the need to ration scarce resources, whether or not such a policy is actually formalized, can lead to covert rationing. Overt rationing under managed care has already occurred. Some of the data put forth justify that rationing must be challenged, and ethical principles should be applied to provide appropriate and perhaps less costly care.4 Because the concept of managed care is involved with medicine, a moral enterprise, public and private policy, enters the ethical arena.^5–7 Health care costs have risen steadily for many years as a result of an inflationary reimbursement system, technological advances, an aging population, and increasing patient expectations. This has accelerated the growth of managed care organizations in an attempt to control costs. Medicare has evolved toward the managed care model of health care delivery through the implementation of prospective payment systems and capitation on many services, inclusive of rehabilitation.

PERSONAL ATTITUDES

How older adults are dealt with depends on how they are viewed. When negative stereotypes exist and therapists have a negative view of older adults, the health care the individual receives is compromised.

Most studies of attitudes toward older adults have focused on sex, contact, race, and socioeconomic status. Even though labels are an important descriptive tool, attitudes may develop toward a group as a whole that ignores individual differences.^8,9 Increased contact with older adults allows people to view them on a more personal level rather than generalizing or stereotyping about the meaning of being old. Harris and Fiedler¹⁰ demonstrated that the more contact preadolescents had with older adults, the more positive their attitude was to that population. Preadolescent attitudes are important to examine since, according to Piaget, preadolescence is a transitional stage between concrete and formal operations as well as the beginning of attitude judgments and stereotyping.¹⁰

At a very young age, people learn that all old people must be looked after and attribute personality traits to them, such as childishness, irritability, incapability of reasoning or of learning new information, and inability to make important decisions about their lives. If the rehabilitation therapist makes these generalizations regarding older adults, he or she may fail to notice or investigate personality changes that have recently occurred, such as confusion. It may be assumed that the patient has been confused for a long time because he or she is old, when in reality the onset of confusion was a week prior to contact and due to physiological or pharmaceutical causes.¹¹

Society also tends to believe that body image is not important to an older person and does not view older adults as sexual beings. Therefore, it is easy to overlook the emotional needs of an 85-year-old woman who has just had a mastectomy and fail to explain the prosthetic options that are available.¹¹

MEDICAL DECISION MAKING

One of the basic ethical principles that guides health care providers in making decisions is called beneficence. This involves providing benefits to the patient, including preserving life. When a clear medical picture is present, the clinician and patient usually agree on the decisions that must be made; however, when it is not present, “defensive medicine,” which does not necessarily benefit the patient but instead builds evidence against malpractice, is often practiced.¹²

The paradigm of good decision making is properly informing competent patients of their care options and the possible outcomes and risks of treatments so they can decide the course of treatment, which should be limited only by the clinician’s availability and willingness to provide the treatment.¹³ The clinician should not be a neutral party and should take an active role in encouraging acceptance of an appropriate treatment, but the patient must not be coerced or deceived.¹⁴

An important consideration in medical decision making is the individual’s value system. What constitutes quality of life to the patient may be very different from the clinician’s philosophical beliefs, and when making decisions, the self-determination or autonomy of the patient should always prevail.12 Decisions in rehabilitation therapy treatment, which have usually been based on scientific knowledge and professional experience, can be deficient since the moral aspect of the treatment may have been ignored. The value system of the patient must be considered, especially with regard to goal setting. What may be considered functional by the therapist may not meet the goals the patient has set.¹⁵

Decisional capacity must be assessed by the health provider before intervention is implemented and should be based on the individual’s mental status, judgment, and short-term memory. The greater the risk of the treatment, the more carefully the decisional capacity must be evaluated. Many older people who are not capable of making their own decisions are treated as if they are because they nod their head and agree with everything the clinician says. Older patients are denied the right to choose proper medical care if they are not properly evaluated by the health care team.¹⁴

If it is determined that an older patient is no longer able to make his or her own decisions, the first appeal should be to any specific documents of empowerments executed while the patient was capable. These empowerments or advanced directives, which include power of attorney and living wills, make it possible for health care professionals to determine the wishes and values of the patient and will be covered in depth later.

If the patient is unable to make medical decisions and advanced directives are not present, a surrogate decision maker must be chosen. This surrogate is usually a spouse or, as is often the case with older adults, a son or daughter. For older adults who have outlived all family and friends, the only alternative may be a court-appointed guardian. In special cases in which the court feels the patient is unable to make medical decisions but the clinician and family feel the patient is capable, both the patient and the court-appointed surrogate must agree on a course of treatment.¹⁴

Conflicts regarding medical decisions may exist within the older patient, such as retaining a normal appearance vs attaining the best cure possible or deciding whether to spend one’s life savings on a costly treatment knowing it will be a financial burden to the rest of the family. In these cases, the patient should be the one to resolve the dilemma with the help and support of the clinician. The responsibility of the clinician is to present the facts regarding the treatment choices, but it may be more helpful to supply information about others who have been through similar experiences.¹³

Professional conflicts may be present that affect decision making by placing the patient’s needs in competition with the clinician’s interests. For example, a therapist may want a patient to reach a normal, functional status but also hopes the patient will need his or her services for a long period of time to financially support the practice. In this case, the clinician must obviously serve the needs of the patient and disregard his or her own incentives.¹³

Other difficult situations arise when a competent patient has poor judgment regarding his or her ability to function at home or in society (such as driving a car), in which case the clinician is responsible for weighing the risks of performing these activities and must act to preserve the safety of the patient and others. In such cases, the therapist must not act in ways that would be only moderately beneficial to the patient but would also be detrimental to society or the patient’s overall safety.¹³

Insufficient legal focus has been placed on discharge planning, which has become more of an issue with the formation of diagnostic-related groups (DRGs). However, it has been determined that if a patient is capable of making decisions, it is illegal to place that patient in a residential facility against his or her will. The family would have to petition the court for guardianship in order to override the patient’s discharge preference.¹⁴

ALLOCATION OF RESOURCES

The growth of the older population, especially of that over the age of 85, poses economic and ethical dilemmas due to the rapid increase in the demand for health care services at a time when resources are scarce. Some important questions are as follows: (1) How should these resources be rationed? (2) Who should be responsible for allocating these resources? and (3) How should the scarcity of these resources affect medical policy decisions?⁴

Allocation of resources is commonly based on need and the belief that society should take care of its members. The disproportionate amount of medical care older adults need makes this group particularly vulnerable when it comes to rationing resources. Critics of Medicare view the program as “overgenerous and unwarranted” for people who do not have the need for this special help. Some feel that the dispensing of Medicare funds should be based on financial need rather than on medical need. Public opinion on this topic is indicated in a state poll showing moderate support (36%) for age criteria in health care and the feeling that resources should be given to people who will receive the most long-term benefit from the treatment, which can exclude older adults.^2,16

Clinicians have always felt age is an important consideration when making medical decisions, but they are unclear about the ethical and moral implications of their actions. Sometimes it is felt that it is better to allocate resources to the young, who have their whole lives ahead of them, rather than older adults, who have already experienced life, since the young are more capable of adjusting to handicaps and will be able to repay the costs with future contributions. Productivity has always been a criteria of need, which is ironic because older people are forced out of the workplace due to mandatory retirement and are, therefore, considered less productive. However, one must also consider that older adults have contributed to society and that society has a responsibility to take care of them.^8,9,16,17

One difficulty in basing medical decisions on age is the uncertainty of the prognosis in determining how long a person will live, particularly for an older person who is suffering from multiple illnesses. Another important factor that age criteria fail to recognize is that each person’s life is important to him or her, and a longer life is not more valuable than a shorter one. Society must be careful not to devalue the life of an older individual, particularly one who is dependent, since this may lead to abusive discrimination of the older adult. Each person has an equal right to life no matter how old the individual is, and the quality of life should be evaluated by the patient only and not the clinician.14,16

When limited resources exist, obviously not everyone will be entitled to every possible medical benefit, but the question remains of how rationing should be implemented. Should health care be distributed according to ability to pay, or is it a social obligation to supply care regardless of financial ability? Ideally, everyone should have the right to proper health care, which should not be considered a luxury but a basic need. Conflicts arise when people use resources without replenishing them by either paying personally or having insurance that will pay. When this occurs, society is harmed because other people, in addition to not receiving the services, will have to replenish the funds.^18,19

Who should be responsible for distributing these scarce resources? If the therapist is given the chore of making funding decisions, the trust between the patient and the practitioner may be jeopardized. Patients trust that the physical therapist will provide the treatment needed regardless of financial concerns. Controlling expenditures are counterbalanced by the ethical obligations of the practitioner and negligence laws that demand that maximum effort should be made to cure the patient.¹⁴

With the growth of the health maintenance organization industry, clinicians are given the new role of gatekeeper and, given the limited resources, must face the situation in which resources spent on one patient will mean fewer resources for another. When a patient’s health provider or insurance policy does not provide payment for health care services, the clinician should respect the right of the patient to limit treatment he or she does not value if it involves using personal funds. Conflicts for the clinician arise when the patient wants the treatment more than the provider and will pay for the care with personal funds. In this scenario, the clinician must consider that even though financial resources will not be compromised, access to resources (space and equipment) may hinder other patients from receiving care who need it more.³

In the past, the patient had to be cautious because reimbursement policies encouraged clinicians to provide unnecessary treatment. Today, with the change in public policy and the addition of DRGs, the patient’s rights are in danger of being violated due to incentives to limit treatment, decreasing the role of the clinician as the patient’s advocate. The presence of these DRGs will affect older adults the most because treatment will be discontinued prematurely for individuals with long-term illnesses. When economic incentives provided to clinicians lead them to deny beneficial care, there is a direct threat to the requirement that clinical decisions be competent and respect the patient’s decision-making autonomy. For example, one cost control method is rewarding an institution for offering a treatment at a lower cost. Hospitals that deliver treatment for less than the DRG rate can keep the difference. As a result, hospital administrators are examining the decisions of the clinicians to use resources and are applying pressure to physicians to deny beneficial treatment and the patient’s right to choose that treatment.^9,18

Another new medical policy that creates a conflict of interest is the addition of case managers to insurance companies because the managers’ dominant measure of success is keeping costs low even though they want the patients to be satisfied with their care. If the patient’s interests were always served, obviously the cost-saving goal would not be achieved. Therefore, formal ethics do not provide the answer. One suggestion is to give the balancing responsibility to the direct care provider who is given incentives to conserve costs but also possesses the moral and professional desire to meet the needs of the patient. This, however, creates a conflict of interest for the clinician, who is left with a situation in which the balance between the benefit for the patient and the cost to the system is unclear; to deny the patient the resource without informing him or her about the denial is ethically wrong. Providers have an obligation to inform patients regarding care options, even though they are denied these options by the system.¹³

Because of all these conflicts regarding allocation of resources, one can see that health care professionals will become frustrated with not being able to supply quality treatment unless they become more directly involved with health care policy formation and evaluation. The true challenge for the medical care system in the future will be learning how to balance the increasing medical needs of older adults with the financial limitations of the system.^8,13

CAREGIVER STRESS

Contrary to what many people believe, a majority of older people are being cared for at home by family members.⁴ Studies show that family members who provide care to relatives with disabilities experience emotional, physical, and social strain. They also suffer from higher rates of depression, perceived burden, social isolation, family discord, and poor physical health than people who do not have this responsibility. A study performed by Rabins and associates²⁰ of a small sample of older chronically ill individuals revealed family caregivers underwent some adaptations over a 2-year period. It was found that anger and anxiety toward their situation decreased, but guilt and depression persisted.²⁰

Two reasons physical or occupational therapists would naturally involve the family of an older patient is that they are a valuable source of information and they will provide care for the patient. However, the practitioner should be aware that the plan of care worked out by the patient and the clinician may be a burden on family members, and there are limits to the burdens of care that should be placed on the family. This creates a conflict of interest between the patient and the family.3

If the care of the older patient places a financial burden on the family, there is an ethical obligation to allow the family to participate in decision making. Conflicts arise when the decisions of the family and the patient differ, putting pressure on the 2 parties and possibly compromising the autonomy of the patient. Problems also occur when the family underestimates the difficulty or cost to them of the proposed patient care, which may lead to harm to all parties. Caring for an older relative at home impairs the freedom, independence, and satisfaction of others in the home, and responsibilities fall more on the functional family members, which causes resentment. In this case, it is the moral obligation of the clinician as well to help the family evaluate the responsibility they are undertaking.³

ELDER ABUSE

Identification and the subsequent reporting of elder abuse is an unfortunate circumstance to which many health care providers are exposed to in geriatrics. Because the practice of rehabilitation involves the development of an ongoing relationship with patients during the course of treatment and may also include frequent contact with the patients’ families, it is critical that physical and occupational therapists know how to identify and effectively intervene in situations of suspected abuse.

Elder abuse occurs most commonly in residential rather than institutional settings, and the most likely perpetrators are known by the victim.^21,22 Although a defined set of risk factors has not yet been developed, careful questioning and assessment can help determine whether a patient is at increased risk. Some potential risk factors for mistreatment of older people include age, race, low income, functional or cognitive impairment, a history of violence, and recent stressful events.^21,23 Both depression and dementia have been identified as particularly strong risk factors associated with abuse of older adults.^24,25 There is little information in the literature concerning the clinical profile of mistreated older people.

The common types of elder maltreatment include caregiver and self-neglect, emotional and psychological abuse, fiduciary exploitation, and physical abuse.²³ Assessment consists of comprehensive physical examination, including scrutiny of the musculoskeletal system, neurologic and cognitive testing, and detailed social and sexual histories.²⁶ Clues that cannot be explained medically may signal elder abuse. To properly intervene, clinicians should be familiar with state laws governing reporting procedures and patient privacy.^27,28

Although as clinicians we are less likely to explore abuse beyond the physical, psychological, and cognitive realms, there is a dearth of literature on financial exploitation of older persons.²⁹ In fact, financial abuse accounts for up to one-half of all types of elder abuse in the United States, accounting for over 500,000 victims. Psychological abuse, including deception, intimidation, and threats, always accompanies financial exploitation.²⁹ Despite the devastating emotional and financial losses incurred, rehabilitation professionals are reluctant to recognize, diagnose, and assist impaired older victims of financial exploitation. This type of abuse, if suspected, should provoke a referral to a social worker or legal consultant by the rehabilitation professional.

PATIENT DIGNITY

Older people should be able to live out their lives with dignity, security, and independence. The tendency in American society is to place older adults in nursing homes where they lose their identity, self-esteem, and individuality instead of encouraging and helping them to spend their remaining years in the dignity of their own homes. The readiness to place older adults in these institutions stems from a negative basic attitude toward older adults in this country. In Scandinavia, there is a system called open care, in which older adults are not dependent on the charity and patience of relatives. Older people in this system retain their independence through programs that allow them to live in their own homes safely with outside help. The cost of this expensive program is paid for by the Scandinavian people through extremely high taxes. This basic attitude, that it is the responsibility of society to take care of its older population, differs from the United States, which tends to be motivated by politics and would not consider advocating the costly care the Scandinavians have chosen.³⁰

Principle 1 of the American Physical Therapy Association Code of Ethics states that physical therapists must respect the rights and dignity of all individuals.³¹ Likewise, principle 2 of the American Occupational Therapy Association states that occupational therapy personnel shall respect the rights of the recipients of their services (autonomy, privacy, and confidentiality).³² This must be considered when implementing medical intervention because to ignore this principle is to treat the individual as less than human. When the therapist is not able to see the older person as an individual, treating the patient with dignity is compromised.⁸

One way the clinician can maintain the dignity of patients is to respect their autonomy and right to make decisions regarding their care. The health care professional must remember that even though older persons may be in a dependent state, the individuals have had a whole lifetime of self-determination that should not cease because they are temporarily or permanently disabled. This includes their right of confidentiality with respect to family members at the onset of treatment. This does not preclude the clinician from exploring the reasons the patient desires this confidentiality, especially when bad feelings are present, but ultimately the desires of the patient should prevail.3

There is also a tendency for health care professionals to treat older adults, given their dependent state, like children, which is an assault on the individual’s self-esteem and dignity. Because of this view, the clinician may assume that sons and daughters of the older adult should assume a parenting role, and important decisions will be discussed with the patient’s children rather than with the patient. The health care provider may treat the older patient like a child on a smaller scale, such as assume the patient may be addressed by his or her first name, placing bows in an older woman’s hair, or referring to an older man or woman as “cute,” all of which compromise a patient’s dignity.¹¹

The main way to promote self-esteem and dignity in the older population is to change the attitude that society has toward growing old. Given the difficulty of changing this global problem, it may be a start to at least change the way rehabilitation therapists feel toward older adults.¹¹

PATIENT RIGHTS

The rehabilitation therapist is responsible for the maintenance of the basic rights of human beings during their illnesses, such as independence of expression, decision, and action. The American Physical Therapy Association House of Delegates has adopted rights for the individual referred or admitted to the physical therapy service that include but are not necessarily limited to the list in Table 17-1. The American Occupational Therapy Association has established a similar set of statements regarding the rights of patients when referred for occupational therapy (Table 17-2).

There is a particular need to safeguard the rights of older individuals in nursing homes. Ombudsmen funded by Medicare are available to provide information regarding patient rights and protection in long-term care facilities.¹⁴ Task forces have also been formed consisting of nursing home staff members and administrators; government officials; and medical, legal, and social service professionals to help protect the rights of older people in long-term care facilities. One accomplishment of the task force was to determine when it is appropriate for a patient to receive “supportive care” in a facility by setting up recommendations and guidelines. In the past, nursing homes abused patients by placing them on supportive care orders regardless of their health status.³⁵ Sometimes supportive care is taken to mean “no care necessary,” leading to neglect of the older patient’s basic needs. The task force defines supportive care as “care that is intended not to prolong life but to promote the dignity of the patient, minimize pain, preserve hygiene, and support the psychological, social, emotional, and spiritual needs of the patient and family.”^36,37

Table 17-2. American Occupational Therapy Association’s Patient Rights

1. Occupational therapy personnel shall collaborate with service recipients or their surrogate(s) in determining goals and priorities throughout the intervention process.
   
2. Occupational therapy personnel shall fully inform the service recipients of the nature, risks, and potential outcomes of any intervention.
   
3. Occupational therapy personnel shall obtain informed consent for participants involved in research activities, indicating they have been fully advised of the potential risks and outcomes.
   
4. Occupational therapy personnel shall respect the individual’s right to refuse professional services or involvement in practice, research, or educational activities.
   
5. Occupational therapy personnel shall protect the confidential nature or information gained from educational, practice, research, and investigational activities.

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