Activity and Therapy

Reminiscence refers to recollections of memories from the past. It is familiar to us all and can be utilised
for the benefit of others. For people with Alzheimer’s disease encouraging the act of reminiscence can be
highly beneficial to their inner self and their interpersonal skills. Reminiscence involves exchanging
memories with the old and young, friends and relatives, with caregivers and professionals, passing on
information, wisdom and skills. It is about giving the person with Alzheimer’s a sense of value,
importance, belonging, power and peace.
Reminiscence activity and therapies are used frequently in our own lives and well as in therapeutic
settings and residential care. We all use it to cope in times of stress, such as mourning, it can also help
reduce injury to our self image and it can create a feeling of intimacy and give special meaning to contact
time with others.
Different Mediums used for Reminiscence Therapy and Activities
A variety of mediums can assist the act of remembering that use different senses.
It means that people who have difficulty communicating verbally can have the opportunity to do so in
other ways. Establishing identity with or without words is a good example of how we have to adapt,
giving a valuable opportunity to acquire and use new skills of communication.
 Visually: photographs, slides. Painting pictures, looking at objects of autobiographical meaning.
 Music: using familiar tunes from the radio, C.Ds, or making music using various instruments.
 Smell or taste: using smell kits, different foods
 Tactile: touching objects, feeling textures, painting and pottery.
Types of Reminiscence Activities and Therapies
Reminiscence can be used as individual, group or family sessions and is generally categorised in three
main types:
 Simple reminiscence. Here the idea is to reflect on the past in an informative and enjoyable way.
 Evaluative reminiscence is more of a therapy and may, for example, be used as a life reviewing or
sometimes conflict resolving approach.
 Occasionally, unpleasant and stressful information is recalled and this has been called offensive-
defensive reminiscence. It can be the either the cause or the result of behavioral and emotional issues.
Dealing with them can provide resolution - a coming to terms with life events and possible closure.
Inclusion of Caregivers, Friends and Relatives in Reminiscence Activity
In a care facility, or in a professional setting, the co-operation and inclusion of relatives and friends can
enhance the reminiscence time for all parties. They may be able to provide photos or remember incidents
in the person’s life that can increase the pleasure and engage a person with Alzheimer’s attention more
fully. Friends and relatives can also provide valuable information on any subject that a person may find
distressing or upsetting that require increased support.
The Right to Refuse Activity Involvement and Alzheimer's
Remember to respect the individual’s involvement and contributions. By all means try to encourage
participation but if a person does not want to be involved in the activity respect their right to refuse. Their
refusal is as valid as yours, for self protection, privacy, as an act of autonomy and power over their
situation.

Treatments - Reminiscence Therapy

What is Reminiscence Therapy?
Reminiscence therapy is used for depression in older people. It involves the person reviewing the
significant events of their life, both positive and negative. This can be done with a therapist working
either individually or with a group of other older people.
How does Reminiscence Therapy work?
The theory behind reminiscence therapy is that a person will naturally reflect back on their
experiences as they approach the end of their life. People who do not do this are thought at risk of
developing despair and depression.
Is Reminiscence Therapy effective?
There have only been two studies looking at reminiscence therapy in depressed older people. Both
found it to be better than no treatment. However, one of these studies found that reminiscence was
not as effective as another type of psychological therapy in which people develop their problem-
solving skills.
Are there any disadvantages?
None known.

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Where do you get Reminiscence Therapy?
Reminiscence therapy is not easy to get. It may be available from some organizations that provide
services to older people.
Recommendation
There is some evidence that reminiscence therapy is useful for depression in older people, but more
research is needed.

Elder Abuse
Transcript
The aging of populations carries with it a hidden problem: elder abuse. 1 As Stephanie Lederman,
executive director of the American Federation for Aging Research notes, “A large segment of our
population is both dependent and frail. Studies on elder abuse now alert us that seniors are also vulnerable
and in need of help.”2
And the problem is getting worse. According to the most recent study from the National Center on Elder
Abuse, the incidence rate of elder abuse increased 150 percent between 1986 and 1996. 3
How large is the at-risk segment? One study of 2,812 adults over age 65 revealed that 6 percent, or 176,
of them were seen by elderly protective services over a nine-year period. Nearly three-quarters of these
cases involved self-neglect, but the remaining 27 percent were traced to the actions of others – nearly 6
percent of the elderly people experienced physical abuse, 17 percent had been neglected, and almost 5
percent suffered exploitation.4
What is elder abuse? The U.S. National Academy of Sciences defines the problem as, “Intentional actions
that cause harm or create a serious risk of harm to a vulnerable elder by a caregiver or other person who
stands in a trust relationship to the elder; or, failure by a caregiver to satisfy the elder’s basic needs or to
protect the elder from harm.”5
Elder abuse not only implies that a person has suffered injury or neglect, but also that a specific
individual, entrusted to provide care, is responsible. The abuse may take a variety of forms, including
physical abuse, psychological abuse, sexual assault, exploitation of material resources, or neglect.
Studying elder abuse is easier said than done. For example, a simple geriatric study on how to prevent
elder fractures due to falls must consider confounding issues such as polypharmacy, visual impairment
from cataracts and other conditions, and depression or dementia, to name a few. 6 When one then attempts
to decipher naturally occurring injuries from deliberate ones, study design and verification become
critical. Was an injury due to loss of balance or assault? Did weight loss occur due to chronic disease and
cancer or from neglect? Was under- or over-medicating the result of forgetfulness or malevolence of the
caregiver?1,6
Risk factors associated with elder abuse are increasingly clear. Most incidences occur in shared living
situations where there is prolonged access by a family member, friend or entrusted surrogate. Elder
dementia creates both a complex management challenge and an unreliable witness to the abuse, which
complicates documentation. Social isolation creates stress that can lead to reactive abuse behavior, as well
as a hidden environment to harbor abuse, neglect, or exploitation. The presence of caregiver mental
illness, including depression or substance abuse, increases the likelihood of harmful behaviors, as does
the use of family-member caregivers who are dependent upon and often resentful of the senior for whom
they are charged to provide care.1,4
Caring for a frail, dependent and vulnerable senior is challenging under the best circumstances. When
abuse is interjected, the consequences are significant, including an increase in mortality rates. One study
has documented that the three-year mortality rate for seniors who are exposed to elder abuse was 91
percent, compared to 58 percent in a matched dependent senior population that was not abused. 4
Dr. Mark Lachs and his colleagues note, “It seems plausible that experiencing elder abuse is an extreme
form of negative social support. In the same manner that social integration reduces mortality, it may
conversely be the case that the extreme interpersonal stress resulting from elder abuse situations may
confer additional death risk.”4
Screening elders for abuse requires high awareness and good clinical judgment. There is not a clear
consensus on routine monitoring or an instrument to be used. 1,4 General concern should be raised when
physicians, nurses, and other members of the care team observe a poor social network, poor social
functioning, and signs of conflict between a patient and a caregiver. Clinicians should trust their clinical
judgment and instincts, do a complete physical assessment with a focus on cognitive function, question

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the patient in private, and be cautious in discussions with the caregiver, extending empathy while
uncovering the individual’s mental status and coping skills. 1
Similarly, families should trust their instincts. Is mom or dad declining without an obvious reason? What
is the level of cleanliness of the patient and the home setting? What is the patient being fed, and, under
direct viewing, how gentle and effective is the process? Are there unexplained bruises, blisters, or painful
areas? Is the senior’s mobility rapidly declining? What is being said to the senior, not simply with words,
but also with messages and tone? And what do your instincts tell you when you make unannounced
visits?
Addressing senior abuse requires a continuum of committed individuals from home to care sites
and back home again, providing reliable monitoring, oversight, diagnosis, and intervention when
necessary. Such a network must be built, and a good place to begin is with an informed
discussion of the issue between family members and their care teams.
Elder Abuse and Neglect: In Search of Solutions
Every person-every man, woman, and child-deserves to be treated with respect and with caring.
Every person-no matter how young or how old-deserves to be safe from harm by those who live with
them, care for them, or come in day-to-day contact with them.
Older people today are more visible, more active, and more independent than ever before. They are living
longer and in better health. But as the population of older Americans grows, so does the hidden problem
of elder abuse, exploitation, and neglect.
Every year an estimated 2.1 million older Americans are victims of physical, psychological, or other
forms of abuse and neglect. Those statistics may not tell the whole story. For every case of elder abuse
and neglect that is reported to authorities, experts estimate that there may be as many as five cases that
have not been reported. Recent research suggests that elders who have been abused tend to die earlier
than those who are not abused, even in the absence of chronic conditions or life threatening disease.
Agnes, 85 years old, lost her husband last year. Because of her own problems with arthritis and
congestive heart failure, Agnes moved in with her 55-year-old daughter, Emily. The situation is
difficult for all of them. Sometimes Emily feels as if she’s at the end of her rope, caring for her
mother, worrying about her college-age son and about her husband, who is about to be forced
into early retirement. Emily has caught herself calling her mother names and accusing her
mother of ruining her life. Recently, she lost her temper and slapped her mother. In addition to
feeling frightened and isolated, Agnes feels trapped and worthless.
Like other forms of abuse, elder abuse is a complex problem, and it is easy for people to have
misconceptions about it. Many people who hear "elder abuse and neglect" think about older people living
in nursing homes or about elderly relatives who live all alone and never have visitors. But elder abuse is
not just a problem of older people living on the margins of our everyday life. It is right in our midst:
 Most incidents of elder abuse don’t happen in a nursing home. Occasionally, there are shocking
reports of nursing home residents who are mistreated by the staff. Such abuse does occur-but it is
not the most common type of elder abuse. At any one time, only about 4 percent of older adults
live in nursing homes, and the vast majority of nursing home residents have their physical needs
met without experiencing abuse or neglect.
 Most elder abuse and neglect takes place at home. The great majority of older people live on their
own or with their spouses, children, siblings, or other relatives-not in institutional settings. When
elder abuse happens, family, other household members, and paid caregivers usually are the
abusers. Although there are extreme cases of elder abuse, often the abuse is subtle, and the
distinction between normal interpersonal stress and abuse is not always easy to discern.
 There is no single pattern of elder abuse in the home. Sometimes the abuse is a continuation of
long-standing patterns of physical or emotional abuse within the family. Perhaps, more
commonly, the abuse is related to changes in living situations and relationships brought about by
the older person’s growing frailty and dependence on others for companionship and for meeting
basic needs.
 It isn’t just infirm or mentally impaired elderly people who are vulnerable to abuse. Elders who
are ill, frail, disabled, mentally impaired, or depressed are at greater risk of abuse, but even those
who do not have these obvious risk factors can find themselves in abusive situations and
relationships.
Elder abuse, like other forms of violence, is never an acceptable response to any problem or situation,
however stressful. Effective interventions can prevent or stop elder abuse. By increasing awareness
among physicians, mental health professionals, home health care workers, and others who provide

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services to the elderly and family members, patterns of abuse or neglect can be broken, and both the
abused person and the abuser can receive needed help.
What Is Elder Abuse?
Elder abuse is the infliction of physical, emotional, or psychological harm on an older adult. Elder abuse
also can take the form of financial exploitation or intentional or unintentional neglect of an older adult by
the caregiver.
 Physical abuse can range from slapping or shoving to severe beatings and restraining with ropes
or chains. When a caregiver or other person uses enough force to cause unnecessary pain or
injury, even if the reason is to help the older person, the behavior can be regarded as abusive.
Physical abuse can include hitting, beating, pushing, kicking, pinching, burning, or biting. It can
also include such acts against the older person as over- or under-medicating, depriving the elder
of food, or exposing the person to severe weather-deliberately or inadvertently.
 Emotional or psychological abuse can range from name-calling or giving the "silent treatment" to
intimidating and threatening the individual. When a family member, a caregiver, or other person
behaves in a way that causes fear, mental anguish, and emotional pain or distress, the behavior
can be regarded as abusive. Emotional and psychological abuse can include insults and threats. It
can also include treating the older person like a child and isolating the person from family,
friends, and regular activities-either by force or threats or through manipulation.
 Caregiver neglect can range from caregiving strategies that withhold appropriate attention from
the individual to intentionally failing to meet the physical, social, or emotional needs of the older
person. Neglect can include failure to provide food, water, clothing, medications, and assistance
with the activities of daily living or help with personal hygiene. If the caregiver has responsibility
for paying bills for the older person, neglect also can include failure to pay the bills or to manage
the elder person’s money responsibly.
Madeline is 75 and suffers from congestive heart failure. She lives alone, with home health
nurses and nurses’ aides coming in daily to provide nursing care and personal assistance. She
depends on the home health agency’s personal assistant to help her with the routine tasks around
the house and to provide interaction with someone from the outside world. At first, the assistant
was sweet to Madeline, but lately, the assistant has started ignoring Madeline’s requests,
snapping at her, and bumping into her with the vacuum cleaner or dusting brush while cleaning.
Madeline thinks the assistant is bumping her on purpose, but she doesn’t know for sure, and
she’s afraid to confront her.
 Sexual abuse can range from sexual exhibition to rape. Sexual abuse can include inappropriate
touching, photographing the person in suggestive poses, forcing the person to look at
pornography, forcing sexual contact with a third party, or any unwanted sexualized behavior. It
also includes rape, sodomy, or coerced nudity. Sexual abuse is not often reported as a type of
elder abuse.
 Financial exploitation can range from misuse of an elder’s funds to embezzlement. Financial
exploitation includes fraud, taking money under false pretenses, forgery, forced property
transfers, purchasing expensive items with the older person’s money without the older person’s
knowledge or permission, or denying the older person access to his or her own funds or home. It
includes the improper use of legal guardianship arrangements, powers of attorney, or
conservatorships. It also includes a variety of scams perpetrated by sales people for health-related
services, mortgage companies, and financial managers-or even by so-called friends.
Sometimes older adults harm themselves through self-neglect (e.g., not eating, not going to the doctor for
needed care) or because of alcohol or drug abuse. In this pamphlet, the focus is on elder abuse that is
perpetrated by others. However, one of the most difficult problems family members face is achieving a
balance between respecting an older adult’s autonomy and intervening before self-neglect becomes
dangerous.
Older adults who show signs of dementia may become abusive as part of the disease process, and the
object of the abuse may be another older adult, for example, a spouse who is caring for the impaired
elder. The abuse may take the form of hitting or gripping the caregiver to the extent of causing bruises, or
creating hazards such as setting furniture on fire. Although the behavior can be explained by the
impairment, it is still unacceptable.
Importantly, while abuse comes in many guises, the net effect is the same. Abuse creates potentially
dangerous situations and feelings of worthlessness, and it isolates the older person from people who can
help.

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Cues That Cannot Be Explained Medically May Signal Elder Abuse
Many of the symptoms listed below can occur as a result of disease conditions or medications. The
appearance of these symptoms should prompt further investigation to determine and remedy the cause.
Physical Abuse
 Bruises or grip marks around the arms or neck
 Rope marks or welts on the wrists and/or ankles
 Repeated unexplained injuries
 Dismissive attitude or statements about injuries
 Refusal to go to same emergency department for repeated injuries
Emotional/Psychological Abuse
 Uncommunicative and unresponsive
 Unreasonably fearful or suspicious
 Lack of interest in social contacts
 Chronic physical or psychiatric health problems
 Evasiveness
Sexual Abuse
 Unexplained vaginal or anal bleeding
 Torn or bloody underwear
 Bruised breasts
 Venereal diseases or vaginal infections
Financial Abuse or Exploitation
 Life circumstances don’t match with the size of the estate
 Large withdrawals from bank accounts, switching accounts, unusual ATM activity
 Signatures on checks don’t match elder’s signature
Neglect
 Sunken eyes or loss of weight
 Extreme thirst
 Bed sores
Why Does Elder Abuse Happen?
There is no one explanation for elder abuse and neglect. Elder abuse is a complex problem that can
emerge from several different causes, and that often has roots in multiple factors. These factors include
family situations, caregiver issues, and cultural issues.
Family Situations and Elder Abuse
Family situations that can contribute to elder abuse include discord in the family created by the older
person’s presence, a history and pattern of violent interactions within the family, social isolation or the
stresses on one or more family members who care for the older adult, and lack of knowledge or
caregiving skills.
Intergenerational and marital violence can persist into old age and become factors in elder abuse. In some
instances, elder abuse is simply a continuation of abuse that has been occurring in the family over many
years. If a woman has been abused during a 50-year marriage, she is not likely to report abuse when she is
very old and in poor health.
Sometimes, a woman who has been abused for years may turn her rage on her husband when his health
fails. If there has been a history of violence in the family, an adult child may take the opportunity to "turn
the tables" on the abusing parent by withholding nourishment or by overmedicating the parent. But that
doesn’t have to be the case-many adult children who were badly treated by their parents become attentive
caregivers.
Family stress is another factor that can trigger elder abuse. When a frail or disabled older parent moves
into a family member’s home, the lifestyle adjustments and accommodations can be staggering.
In some instances, the financial burdens of paying for health care for an aging parent or living in
overcrowded quarters can lead to stress that can trigger elder abuse. Such a situation can be especially
difficult when the adult child has no financial resources other than those of the aging parent.
Sometimes, there may be marital stress between an older couple when they must share a home with their
adult children. Or, the new living arrangements could cause tension between an adult child and his or her
spouse. When problems and stress mount, the potential for abuse or neglect increases.
Social isolation can provide a clue that a family may be in trouble, and it also can be a risk factor for
abuse. Social isolation can be a strategy for keeping abuse secret, or it can be a result of the stresses of
caring for a dependent older family member. Isolation is dangerous because it cuts off family members

5
from outside help and support they need to cope with the stresses of caregiving. Isolation also makes it
harder for outsiders to see and intervene in a volatile or abusive situation to protect the older person and
to offer help to the abuser.
Caregiver Issues and Elder Abuse
Personal problems of the caregiver that can lead to abusing a frail older person include caregiver stress,
mental or emotional illness, addiction to alcohol or other drugs, job loss or other personal crises, financial
dependency on the older person, a tendency to use violence to solve problems. Sometimes the person
being cared for may be physically abusive to the caregiver, especially when the older person has
Alzheimer’s or another form of dementia.
Caregiver stress is a significant risk factor for abuse and neglect. When caregivers are thrust into the
demands of daily care for an elder without appropriate training and without information about how to
balance the needs of the older person with their own needs, they frequently experience intense frustration
and anger that can lead to a range of abusive behaviors.
The risk of elder abuse becomes even greater when the caregiver is responsible for an older person who is
sick or is physically or mentally impaired. Caregivers in such stressful situations often feel trapped and
hopeless and are unaware of available resources and assistance. If they have no skills for managing
difficult behaviors, caregivers can find themselves using physical force. Particularly with a lack of
resources, neglectful situations can arise.
Sometimes the caregiver’s own self-image as a "dutiful child" may compound the problem by causing
them to feel that the older person deserves and wants only their care, and that considering respite or
residential care is a betrayal of the older person’s trust.
Dependency is a contributing factor in elder abuse. When the caregiver is dependent financially on an
impaired older person, there may be financial exploitation or abuse. When the reverse is true, and the
impaired older person is completely dependent on the caregiver, the caregiver may experience resentment
that leads to abusive behavior.
James is a financially secure 90-year-old man who has been healthy and active until the last
year. He has finally agreed to move in with his oldest daughter, Lorraine, who now believes her
father "owes her" more of his money than her brother and two sisters are entitled to. She talks
her father into giving her power of attorney for his bank accounts "as a convenience," then writes
herself large checks that she tells herself are for "expenses." Soon she has come up with excuses
to transfer a significant portion of his investment holdings into her name. James has no energy to
oversee his finances and is totally trusting that his daughter has his best interests at heart.
Emotional and psychological problems of the caregiver can put the caregiver at risk for abusing an older
person in their care. A caregiver who is addicted to drugs or alcohol is more likely to become an abuser
than one who does not have these problems. Indeed, caregiving can lead to greater use of alcohol, in an
attempt to mange stress. Also, a caregiver with an emotional or personality disorder may be unable to
control his or her impulses when feeling angry or resentful of the older person.
Cultural Issues and Elder Abuse
Certain societal attitudes make it easier for abuse to continue without detection or intervention. These
factors include the devaluation and lack of respect for older adults and society’s belief that what goes on
in the home is a private, "family matter." Certain cultural factors, such as language barriers, make some
situations more difficult to distinguish from abuse or neglect, and it is important not to ignore abuse by
attributing the cause to cultural differences. However, before reporting abuse, anyone working with older
people should be sensitive to cultural differences and not mistake these for abuse or neglect. Definitions
of what is considered "abuse" varies across diverse cultural and ethnic communities.
Lack of respect for the elderly may contribute to violence against older people. When older people are
regarded as disposable, society fails to recognize the importance of assuring dignified, supportive, and
nonabusive life circumstances for every older person.
The idea that what happens at home is "private" can be a major factor in keeping an older person locked
in an abusive situation. Those outside the family who observe or suspect abuse or neglect may fail to
intervene because they believe "it’s a family problem and none of my business" or because they are afraid
they are misinterpreting a private quarrel. Shame and embarrassment often make it difficult for older
persons to reveal abuse. They don’t want others to know that such events occur in their families.
Religious or ethical belief systems sometimes allow for mistreatment of family members, especially
women. Those who participate in these behaviors do not consider them abusive. In some cultures,
women’s basic rights are not honored, and older women in these cultures may not realize they are being

6
abused. They probably could not call for help outside the family and may not even know that help is
available.
How Can We Prevent Elder Abuse?
The first and most important step toward preventing elder abuse is to recognize that no one-of whatever
age-should be subjected to violent, abusive, humiliating, or neglectful behavior. In addition to promoting
this social attitude, positive steps include educating people about elder abuse, increasing the availability
of respite care, promoting increased social contact and support for families with dependent older adults,
and encouraging counseling and treatment to cope with personal and family problems that contribute to
abuse. Violence, abuse, and neglect toward elders are signs that the people involved need help-
immediately.
Education is the cornerstone of preventing elder abuse. Media coverage of abuse in nursing homes has
made the public knowledgeable about-and outraged against-abusive treatment in those settings. Because
most abuse occurs in the home by family members or caregivers, there needs to be a concerted effort to
educate the public about the special needs and problems of the elderly and about the risk factors for
abuse.
Respite care-having someone else care for the elder, even for a few hours each week-is essential in
reducing caregiver stress, a major contributing factor in elder abuse. Every caregiver needs time alone,
free from the worry and responsibility of looking after someone else’s needs. Respite care is especially
important for caregivers of people suffering from Alzheimer’s or other forms of dementia or of elders
who are severely disabled.
Social contact and support can be a boon to the elderly and to the family members and caregivers as well.
When other people are part of the social circle, tensions are less likely to reach unmanageable levels.
Having other people to talk to is an important part of relieving tensions. Many times, families in similar
circumstances can band together to share solutions and provide informal respite for each other. In
addition, when there is a larger social circle, abuse is less likely to go unnoticed. Isolation of elders
increases the probability of abuse, and it may even be a sign that abuse is occurring. Sometimes abusers
will threaten to keep people away from the older person.
Counseling for behavioral or personal problems in the family can play a significant role in helping people
change lifelong patterns of behavior or find solutions to problems emerging from current stresses. If there
is a substance abuse problem in the family, treatment is the first step in preventing violence against the
older family member. In some instances, it may be in the best interest of the older person to move him or
her to a different, safer setting. In some cases, a nursing home might be preferable to living with children
who are not equipped emotionally or physically to handle the responsibility. Even in situations where it is
difficult to tell whether abuse has really occurred, counseling can be helpful in alleviating stress.
What You Can Do About Elder Abuse
If you suspect that an older person is being abused or neglected...
Don’t let your fear of meddling in someone else’s business stop you from reporting your suspicions. You
could be saving someone’s life. The reporting agencies in each state are different, but every state has a
service designated to receive and investigate allegations of elder abuse and neglect. Even if these agencies
determine that there is only potential for abuse, they will make referrals for counseling. (Call the
Eldercare locator at 1-800-677-1116.)
Do not put the older person in a more vulnerable position by confronting the abuser yourself unless you
have the victim’s permission and are in a position to help the victim immediately by moving him or her to
a safe place.
If you feel you are being abused or neglected...
Your personal safety is most important. If you can safely talk to someone about the abuse (such as your
doctor, a trusted friend, or member of the clergy) who can remove you from the situation or find help for
the abuser, do so at once. If your abuser is threatening you with greater abuse if you tell anyone, and if the
abuser refuses to leave you alone in a room with others who could help, you are probably afraid to let
anyone know what is happening to you. A good strategy is to let your physician know about the abuse.
The physician has a legal obligation to report the abuser and to help you find safety.
If you are able to make phone calls, you can call protective services or a trusted friend who can help you
find safety and also find help for the person who is abusing you.
If you feel you have been abusive or are in danger of abusing an older person in your care...
There is help available if you have been abusive to an older person or if you feel you want to hurt
someone you are caring for. The solution may be to find ways of giving yourself a break and relieving the

7
tension of having total responsibility for an older person who is completely dependent on you. There are
many local respite or adult day care programs to help you.
If you recognize that abuse, neglect, or violence is a way you often solve problems, you will need expert
help to break old patterns. There is help and hope for you, but you must take the first step as soon as
possible. You can learn new ways of relating that are not abusive. You can change. Talk with someone
who can help-a trusted friend or family member, a counselor, your pastor, priest, or rabbi. If alcohol or
drugs are a problem, consider contacting Alcoholics Anonymous or some other self-help group.
Therapists specialize in helping people change destructive behaviors; to find a competent therapist, ask
your physician or your health plan for a recommendation. If you cannot afford private therapy, call your
city or state mental health services department to find out what your options are.
The most important thing for you is to be honest-with yourself and with those who want to help
you-about your history of violent behavior and about your abusive relationship with the older
person. Someone’s life-and your own-may depend on it.

End-of-life Issues and

Care
The Role of Psychology in End-of-Life Decisions and Quality of Care Issues
Psychologists can make significant contributions to improve the quality of
end-of-life decision-making and care by actively engaging these issues in the
context of practice, education, research, and public policy.
Since psychology as a discipline does not have a strong history of working in
the arena of terminal illness and end-of-life decision-making, attending
educational programs offered by other disciplines and participating as
members of interdisciplinary treatment teams or research panels are vital
strategies for "getting up to speed." These types of collaborations provide
psychologists with partners who have been working in this arena for some
time (e.g., medical doctors, nurses, social workers, ethicists, and
chaplains/clergy) while at the same time permitting psychologists to bring
their considerable skills and knowledge to the table for the shared mission of
improving the quality of care at the end of life. In this way, psychologists can
learn from those with experience while demonstrating the value of including
mental health professionals as active participants in end-of-life decision-
making.
Clinical Roles
With appropriate training in end-of-life issues, psychologists are particularly
suited to carry out clinical roles in assessment, intervention, advocacy, and
interdisciplinary service delivery. Assessment at the end of life includes
several areas such as evaluation of mood and anxiety disorders, pain, family
and caregiver interactions, psychological and cognitive functioning, and
existential concerns. Psychologists are also well prepared to plan and
implement interventions with individuals, family members, and providers.
They can treat clinical depression if and when it arises in end-of-life contexts,
as well as other mental health problems. Psychologists can provide end-of-
life counseling including facilitating emotional expression, helping caregivers
to appreciate the psychological dimensions of the suffering involved, and
being effective listeners and sounding boards for people who are dying, their
families and caregivers, and even their health care providers. Properly trained
psychologists can also work effectively with issues of mourning and loss,
traumatic stress, and general objectives for care of dying individuals
(Weisman, 1972). They can also serve as advocates for good medical care
along with other professionals (i.e., nurses, social workers, and chaplains).
Equally important is participation of psychologists in hospital ethics
committees, palliative care, and other multidisciplinary teams. Quill and his
colleagues (1998) have observed that "Comprehensive, interdisciplinary
palliative care is the standard of care for persons with progressive, advanced
disease for whom prognosis is limited and the focus of medical management

8
is quality of life" (p. 555). In addition, Cummings (1998) has stated that
the multitude of issues faced by patients and families dealing with a life-
threatening illness exceeds the expertise of any one caregiver. The
availability of different team members provides opportunity for support from
a number of sources. The interdisciplinary team...is best equipped to provide
a nurturing environment for patient and family. (p. 19)
Assessment Activities
When working with people who are dying, it is essential to assess the overall
quality of care they are receiving, to identify sources of suffering and ways of
alleviating them, and to determine what decisions need to be made and who
needs to be involved in making and implementing them. Aside from formal
assessment procedures, the mental health professional working in any clinical
role with people at the end of life should keep a number of critical questions
in mind. Answering these questions will require regular consultation with
others, including family caregivers, primary care physicians, nursing staff,
pain specialists, oncologists, psychiatrists, ethicists, gerontologists, hospice
workers, clergy, friends, and volunteers. Below are some of the key questions
for exploration:
 Is medical care accessible and adequate?
 Are palliative care and pain management adequate?
 Are the psychosocial needs of the dying person, family, and
caregivers being addressed?
 Are cultural issues identified and addressed?
 Are spiritual and existential concerns being addressed?
 Is either the physical disease process or the treatment for it creating
emotional distress or cognitive impairment?
Capacity for making health-care decisions may need to be assessed in more
detail (Veterans Affairs National Center for Cost Containment, 1997). To
evaluate cognitive status, psychologists working with other members of the
treatment team can determine if impaired cognitive functioning is temporary
(e.g., due to delirium, which is common among older hospitalized persons
and may be reversible, once the cause is determined) or if it is due to a more
chronic condition such as dementia. It is important to note that individuals
may be competent to make decisions in one area but not in another (e.g.,
persons may be able to make valid decisions about their desire to withdraw
from a given treatment regime while not being considered competent to
handle their own financial resources) (Grisso, 1986, 1994). Careful attention
must also be given to clinical depression, since it can be difficult to assess in
dying persons and yet have an enormous impact on quality of life and
decision-making.
In addition to assessing cognitive status and depression, requests for
interventions that might affect the timing of death should always,
independent of legality or the values of the practitioner, be a signal to explore
the overall quality of care. They should also prompt psychologists to explore
any feelings that patient may have about being undeserving of care or a
burden to others. The psychologist should explore the psychological,
interpersonal, social, spiritual, economic, gender-related, and cultural reasons
behind such requests. Such explorations may reveal areas of unmet needs or
feelings about the self that could suggest a variety of interventions to improve
the quality of life. For example, data suggest that uncontrollable pain is not
the primary motive for people who request assisted suicide. Reasons for
requests for both assisted suicide and euthanasia include many nonphysical
symptoms such as loss of personhood, discomfort other than pain, loss of
dignity, concern about loss of control, loss of meaning in life, being a burden,
and dependency (Back, Wallace, Starks, & Pearlman, 1996; Canetto &
Hollenshead, 1999; Chin, Hedberg, Higginson, & Fleming, 1999; Cohen,
Fihn, Boyko, & Jonsen, 1994; Coombs Lee & Werth, in press; Ganzini et al.,

9
2000; Sullivan et al., 2000a, b; Wilson, Viola, Scott, & Chater, 1998).
Suffering at the end of life and requests for assisted suicide and other
interventions that may affect the time of death frequently are associated with
clinical depression. It is important to note that older people are less likely to
endorse depressive symptoms or suicidal ideation than younger people with
the same level of depression and therefore are less likely to be recognized as
depressed by self-report. Additional complexity is caused by the many
serious medical problems that older depressed individuals tend to have that
can make diagnosis a challenge, even for mental health professionals with
special training in this field (Koenig, Meador, Cohen, & Blazer, 1988). The
Resource Guide will contain a more detailed discussion of assessment issues
related to depression, dementia, delirium, and decisional capacity at the end
of life. It will identify personal and professional issues that mental health
providers should examine before practicing in this area, including personal
values and beliefs, quality and extent of professional training in end-of-life
issues, and ability to make use of consultation and referral.
Clinical & Counseling Activities
It is important to understand that clinical work at the end of life differs from
traditional psychotherapy in significant ways. It can involve advocacy
interventions directed toward assuring quality of care, psychoeducational
interventions aimed at improving understanding about dying and death, and
systems interventions required to facilitate communication between the dying
individual and his or her family and among the individual, the family, and the
medical team. In addition, clinical work may occur in non-traditional settings
(e.g., the home, the hospital, nursing homes, etc.). Professional boundaries
may be more fluid than in traditional psychotherapy cases. For example, it is
common for mental health professionals working with the terminally ill to
respond to requests for tangible support - a drink of water, a special meal,
something from the store, etc. Moreover, the focus of clinical work may be
less on insight-oriented psychotherapy (although that can occur), and more on
decision-making, emotional coping and support, existential concerns, and
bearing witness at the end of life.
Special themes may arise during counseling with terminally ill people.
Within some communities, dying persons and those who care about them
may need help in completing "unfinished business" (Kubler-Ross, 1969), and
achieving an appropriate death (Weisman, 1972). Within these communities,
psychologists can help dying persons raise and resolve issues of meaning in
their individual lives through values clarification and/or life review or
reminiscence therapy. Spiritual issues frequently arise when working with
dying persons and the exploration of spiritual themes is an important part of
offering support and assisting in the creation of meaning. Because spiritual
issues are not often considered to fall within the domain of psychotherapy,
many therapists have limited experience and training in this area and thus
should be alert to the limits of their expertise and make referrals when
appropriate. None of the issues discussed here are universally applicable to
all individuals or communities, and the discussion of diversity issues in
Section One of this report should be referred to in this regard.
Other themes that may arise in end-of-life clinical work that distinguish it
from traditional psychotherapy include a heightened emphasis on grief,
mourning, loss, and feelings about dying and death, and coping with sorrow,
depression, anger, guilt, and anxiety. Unresolved grief over the earlier deaths
of loved ones is likely to arise as some dying people relive past losses in
preparation for losing everything. Fears about dependency, the loss of
autonomy, control, and dignity are other themes that may arise in counseling
dying persons. In addition, being a burden to others emotionally, physically,
or economically are common concerns that may need to be addressed.
Misunderstandings among family and caregivers concerning the nature of

10
anticipatory mourning is also a frequent theme. Psychologists may reduce the
risk of complicated mourning by promoting healthy anticipatory mourning
processes (Rando, 2000) and normalizing anticipatory mourning among
family and caregivers. This may include working with people who have had
upsetting images of death, traumatic stress reactions, or post-traumatic stress
reactions following previous losses (the Resource Guide will contain a more
extensive discussion of grief, mourning, loss, and trauma).
Terminally ill people face emotionally charged and symbolic milestones of
loss during the course of the dying process. For example, accepting a feeding
tube, or deciding to have a permanent infusion line implanted through which
medications like morphine can be administered on a continuous basis, may
represent an important signal to the dying person that death is becoming more
imminent, and may symbolize surrender or acceptance. Other symbolic
decisions that arise include whether to get hospice care, receive care at home,
or be in a medical setting of some kind. Each of these decisions may
represent losses that need to be experienced and grieved.
Dying individuals and those close to them may need help with problem
solving and decision-making of a more general nature. Clinicians can help
clarify, identify, frame, and articulate choices and priorities. For some, this
may include making sure a will is in order or completing an advance care
directive. Psychologists can clarify the purpose and function of advance
directives to help individuals and families discuss advance care planning and
also, if necessary, act as advocates to help ensure that these directives are
followed. It is important to note that some communities regard advance
directives with great suspicion because they are viewed as leading to rationed
care.
Attending to such details as identifying and designating a responsible
guardian or health-care proxy for the dying person and providing
psychological support as the person makes that choice is another task that
psychologists can assume. Some dying individuals may wish to consider
what kind of legacy they want to leave, and to plan the kind of
memorialization they want. Even the smallest end-of-life decisions can have
meaning and implications that deserve exploration and emotional support.
Ambivalence about many of these decisions is normal, and the clinician can
help people identify the mix of feelings they experience so that they can
make thoughtful choices. However, psychologists working in this arena must
bear in mind that in some communities, planning for death is unacceptable or
even considered dangerous.
If the dying person is no longer competent to participate in decision-making
because of the effects of the underlying illness or of various pain
medications, the proxy decision-makers acting on the individual's behalf can
often benefit from skilled psychological assistance. The emotional burden of
making life and death decisions for a loved one can be enormous because
some decisions are irreversible. There may also be conflict among family
members about the best course of action. Psychologists can play a positive
role in clarifying the situation, facilitating discussion, providing support for
the decision-makers, and helping them deal with any residual feelings of guilt
or regret over their decision.
A final cautionary note to clinicians working in end-of-life venues is in order.
The intensity of working with people who are dying makes it essential for
such professionals to have a strong support system to handle issues of loss,
grief, vulnerability, and traumatization from working so closely with dying
and death.
Advocacy Activities
Dying individuals often have difficulty communicating with health providers
about symptoms, fears, and needs, and psychologists can act as their
advocates. Advocacy for quality care for terminally ill individuals and their

11
families may involve working as part of multidisciplinary teams to ensure
that individual needs and quality of life issues are understood and addressed.
Physicians often lack training in end-of-life care and palliative services.
Physicians have been repeatedly shown to under-recognize and under-treat
pain and depression in dying individuals (Peruzzi, Canapary, & Bongar,
1996; Quill et al., 1998). Therefore, psychologists may act as advocates for
increased pain control as well as provide special expertise in assessment of
depression (Conwell, Pearson, & DeRenzo, 1996).
Emerging Models of Service Delivery
There are two emerging models of service delivery through which
psychologists can make effective contributions to end-of-life decision-
making: functioning as a team member in a hospital or hospice setting and
functioning as part of an ethics committee to provide insights into the
psychological aspects of cases being reviewed. Although participation in
hospital ethics committees and multidisciplinary treatment teams is a
relatively new role for most psychologists, it is clear that psychologists can
add a unique perspective to health care providers dealing with difficult end-
of-life decisions. For example, informed psychologists can participate in case
reviews to facilitate better planning and decision-making and help to educate
hospital staff about psychological aspects of care of dying individuals. They
can also help to coordinate individual and family care. In addition,
psychologists can provide expert psychological guidance to ethics
committees struggling with issues of competency and depression. Finally,
they can also support medical staff more directly by helping them to deal
with difficult patients or family members as well as supporting them in
dealing with their own feelings around grief, loss, and dying (Block &
Billings, 1998; Field & Cassel, 1997).
Education and Training Roles
Education of the Profession
Since psychology does not have a strong history of working in the arena of
terminal illness and end-of-life decision-making, the discipline will need to
focus on self-education first. As mentioned previously, attending educational
programs offered by other professions and participating in interdisciplinary
treatment teams or research panels are vital strategies for bringing the
profession "up to speed." The field of thanatology (the study of dying, death,
and bereavement) is essentially a multidisciplinary area of study and those
wishing to specialize in it should be receptive to learning from a variety of
professionals. There are, however, a significant number of psychologists who
have attained stature as authorities in this field and they may be in a position
to serve as teachers and mentors. It is essential for end-of-life issues to be
integrated into existing undergraduate and graduate courses (Abeles &
Barlev, 1999; International Work Group on Death, Dying, and Bereavement,
1991). Free-standing courses in the psychology of dying and death can also
be added to both undergraduate and graduate curriculum.
Content areas for these courses could include: the demographics of aging and
dying; the process of dying; loss, mourning, and grief; attitudes toward dying
and death; quality of life issues; needs of the dying, their loved ones, and
their caregivers; understanding the culture of the medical setting; ethical
issues involved in end-of-life care; quality of care issues; the importance of
ritual at the end of life; gender and diversity issues in end-of-life care and
decision-making; incidence and effects of depression, dementia, and delirium
at the end of life; and clinical training in assessment of people at the end of
life. Integration across the curriculum of gender and diversity issues and
exposing students to a variety of social and cultural groups in their practica
should occur at every level. Practical experience can be offered to students
through supervised practica and internships in hospitals, nursing homes,
hospices, and home health care agencies. Supervised practical experience can

12
also be gained through illness-focused agencies, illness and bereavement
groups, and mental health agencies serving relevant populations.
Extracurricular activities planned through Psi Chi or a Psychology Club can
provide additional exposure.
Professional education and training in end-of-life issues is different from
training in standard counseling and psychotherapy techniques both in style
and in content. As noted above, clinical work with people at the end of life is
typically more short-term and interactive and it involves more advocacy than
other kinds of counseling. Educational methods should also include values
clarification and self-exploration of personal attitudes toward death (Stillion,
1983, .
Education of the Public
As more psychologists become knowledgeable about working with people
making end-of-life decisions, they can make significant contributions to the
public dialogue about end-of-life issues. Psychologists, along with other
health care providers, can appear on panels dealing with end-of-life decision-
making. They can work with the media, prepare publications, videos, and
other psychoeducational materials. They can also encourage discussion about
dying and death with clients and their family members when culturally
appropriate.
People need knowledge in order to communicate effectively with health care
providers. Psychologists can help people understand loss, grief, and
mourning; explain the concept of traumatic stress in response to difficult
deaths and losses; and help understand differences between normal sadness
and clinical depression at the end of life. They can teach people to be more
aware of unique individual needs and assumptions about dying and death.
They can identify common problem areas for families, significant others, or
intimates facing death, encourage values clarification around end-of-life
issues, provide information about advance care planning and how to
implement it, clarify issues involved in difficult end-of-life decisions, and
teach coping mechanisms. They can raise awareness of when or how sexism,
ageism, ethnocentrism, and ableism influence end-of-life planning and
decision-making, and of the social and cultural pressures that may result in
some groups and individuals being devalued.
Research Roles for Psychologists in End-of-Life
The third area in which psychologists can play an important and productive
role in improving care at the end of life has to do with planning and
conducting research. The quality and amount of existing research on end-of-
life decision-making is limited. Therefore, there are multiple opportunities for
extending behavioral and psychological knowledge about the end of life and
about decisions that may affect the timing of death.
Ethical and Methodological Issues
A word of caution is in order. There are ethical issues involved in research
with people at the end of life. Persons who are seriously sick and dying are a
psychologically vulnerable population at risk for exploitation. For example,
dying persons may experience fluctuating patterns of cognitive impairment,
which may require investigators to reexamine informed consent and
participation in research. Another ethical issue has to do with the fact that
participation in research may interfere with care and add stress to people
whose energy level and sense of wellbeing may be fragile. On the other hand,
there are possible benefits and rewards derived from participation in research.
Potential benefits include a sense of altruism, a value that may be important
for persons at the end of life, as well as receiving the attentive care and state-
of-the-science monitoring that is often associated with a clinical trial of a new
care program.
There are a variety of methodological problems associated with much of the
existing research having to do with end-of-life issues (Rosenfeld, in press).

13
For example, many studies have had one or more of the following design
limitations: (a) dependent variables of questionable utility (e.g., hypothetical
questions about some future possible scenario), (b) sample selection bias
(e.g., participants are either not terminally ill or, if they are, they are closely
screened so the results are non-generalizable), and (c) study site bias (e.g.,
palliative care centers provide convenient samples but most people do not go
through the dying process in such places). Another methodological difficulty
associated with end-of-life research has to do with the fact that symptoms
associated with the illness and/or the medications to alleviate those symptoms
may interfere with the ill person's ability to actively participate in the study or
remember information accurately. One strategy to ameliorate this limitation
is to interview significant others in addition to the dying person.
Priority Areas for Future Research
1. There is no common lexicon of terms to describe key events and
phenomena at the end of life. Therefore, researchers from a variety of
disciplines should work toward the development of a consensus on
key terms and concepts related to dying and death. Such
collaboration could provide a basis for developing theories and
advancing knowledge that would be more readily utilized and
understood by professionals in all disciplines involved with end-of-
life care.
2. There is little documentation about the ways in which the people live
the last phase of life and die. Normative research should focus on
emotions, cognitions, behaviors, and attitudes of dying persons as
well as on interactions between dying persons, family members, and
professional caregivers engaged in end-of-life decisions. Research on
normative experiences could also examine the role of psychological,
social, cognitive, and behavioral factors associated with common
problems at the end of life. This could include the study of
psychological issues in pain and suffering, studies of the prevalence
of neuropsychological symptoms in persons suffering from different
diseases, and studies of the prevalence of depression and delirium in
persons with advanced medical diseases. It should also include the
study of family dilemmas and responses to a dying person.
3. It is important to determine how the dying experience and the
meaning of dying differs in relation to diversity factors such as
gender, sexual orientation, education, and cultural group
membership.
4. Research to develop or refine assessment instruments for older, sick,
and/or dying persons is needed. Less taxing measures of depression,
decision-making capacity, and quality of life should be developed
with sensitivity to diversity issues among sick, older, and dying
populations.
5. Research on optimal end-of-life experiences is also needed. It is
important to understand how people want to live the last phase of
their lives and the conditions that they believe will lead to an
appropriate death for them. Researchers should be looking at the
variability of views depending on gender, ethnicity, sexual
orientation, age, education, income, religious background, living
arrangements, and family structure.
6. Research to determine the adequacy of palliative care and the
psychological effects of rationing health care on persons of limited
means and their families is needed. For example, does such rationing
increase the likelihood that such persons will request an intervention
that may affect the time of death?
7. We know very little about the availability and quality of
psychological services for persons in the last phase of life and their

14
 families. Research to discover the extent, timing, type, and delivery
modes of psychological services in use by dying persons and their
families at the present time is in order.
8. Outcome evaluations concerning existing psychological services are
also necessary. This area of research may include surveys of current
forms and uses of psychological services as well as the exploration of
optimal psychological services that could or should be available.
Research is also needed to investigate barriers to quality
psychological care (i.e. attitudinal, organizational, legal, cultural,
economic, and other factors that impede the application of existing
knowledge and principles of psychological care).
9. Research on the relative efficacy of various models of training health
and mental health care providers to work successfully with dying
patients and their families is needed.
10. Research on the psychosocial interactions of dying persons is also
needed. This would include how they interact with caregivers and
families regarding decisions for care, and the variability of those
interactions depending on sex, ethnicity, age, sexual orientation,
education, religious background and practice of the dying person, the
primary family caregiver, and the primary professional caregiver.
11. The effect of caregiver burden on end-of-life decisions is another
fruitful area for research. At what point, if any, in the dying process
are caregivers likely to consider interventions that may shorten life
for their loved ones and what variables contribute to these thoughts?
12. The entire area of psychological, interpersonal, medical, social, and
existential concerns that underlie requests for interventions that may
affect the time of death needs definitive research. In addition, the
responses of family and professional caregivers to such requests need
examination, as does the effect of their responses on the dying
person.
13. Ethical issues in research involving those who are dying and their
families need to be examined and articulated in a systematic way.
14. There is currently an opportunity to conduct research on assisted
suicide itself. Where assisted suicide is legal, psychological autopsy
studies of assisted suicide cases could be carried out. It is also
important to study factors that distinguish the following groups of
individuals: (a) dying persons who do not request assisted death; (b)
dying persons who only express an interest in it; (c) dying persons
who request it but do not go through it; and, (d) dying persons who
actually carry out assisted suicide.
15. Where assisted suicide is legal or decriminalized, it is important to
determine how its availability affects anxiety and comfort levels
about the end of life among older people, the terminally ill, and the
disabled. Further, does the availability of assisted suicide affect the
timing of death (i.e., do people die sooner than they would have if
this action was not available or does its availability result in people
staying alive longer with the knowledge they can make decisions
about the timing of death)? What is the impact of any policy changes
on devalued and disadvantaged groups should be monitored.
Policy Roles
The report of the Institute of Medicine (IOM) Committee on Care at the End
of Life (Field & Cassel, 1997) identified five broad areas of deficiencies in
current care for people with life-threatening and incurable illnesses. Each of
these five areas present numerous opportunities at federal, state, and local
levels for psychologists who are interested in playing advocacy or policy
roles to advance the quality of care at the end of life.
First, many people suffer needlessly at the end of life. Sometimes suffering

15
arises when caregivers fail to provide palliative and supportive care known to
be effective (e.g., appropriate treatment of pain and depression;
pharmacological, compensatory, and environmental interventions to address
dementia and other forms of cognitive impairment; individual and family
counseling to facilitate communication about needs and expectations
associated with end-of-life care; etc.). At other times, suffering arises when
the aggressive use of ineffectual or intrusive interventions serves to prolong
the period of dying unnecessarily or to dishonor the dying person's wishes
about care. Too often, dying people and their families are either not aware of
these care options, not fully apprised of the probable benefits and burdens of
these various options, or are the recipients of care that is inconsistent with
their wishes as expressed in written or oral directives. Psychologists can join
other health care professionals in advocating for the development of public,
institutional, and organizational policies to ensure that individuals and
families know what types of interventions and services are available to them;
understand what types of outcomes they can reasonably expect from such
services and interventions; and receive end-of-life care that is consistent with
their values, beliefs, and wishes.
Suffering can also be reduced by advocacy aimed at encouraging health care
institutions to adopt mechanisms for monitoring and evaluating end-of-life
care from the perspective of individuals and families. As Field and Cassel
(1997) point out, many commonly used physiological and functional
indicators of quality of care are not linked to outcomes as experienced by
persons and families. Psychologists can play a critical role in encouraging
hospitals and other health care institutions to develop and utilize quality of
care measurements that are: (1) relevant to the experiences of dying
individuals and those close to them; (2) sensitive to the effects of changes in
care; and (3) efficient and practical to use.
A second area of deficiency cited by the IOM Report has to do with the
numerous legal, organizational, and economic obstacles that interfere with
quality care at the end of life. Outdated drug-prescribing laws, burdensome
regulations, and problematic medical board policies often intimidate
physicians and other professionals who wish to relieve their patients' pain but
are unable to do so because of scrutiny from regulatory boards and
committees that frequently fail to understand either modern techniques for
pain management, or the psychological and behavioral distinctions between
drug tolerance and physical dependence on the one hand, and addiction on
the other. In addition, fragmented organizational structures often complicate
the coordination of care and reduce the likelihood that individuals and
families will access various types of support services that are essential
elements of quality care. This is especially true with respect to accessing
psychological and psychoeducational services that are rarely integrated with
primary care. Psychologists can play an important role in advocating for
systemic changes in these types of legal and organizational obstacles to
quality care.
Because over 70% of those who die every year are covered by Medicare
(Field & Cassel, 1997), economic obstacles to quality end-of-life care largely
arise from the nature and quality of Medicare benefits. A major concern
about Medicare's hospital payment policies is that they encourage premature
patient discharge and discourage appropriate inpatient palliative services.
Since the 1980s, Medicare has used a prospective payment scheme that pays
for most hospital stays on the basis of diagnosis-related category or group
(DRG). If hospitals spend less than the prospectively-determined DRG
payment, they keep the difference. They are not routinely compensated if
they spend more. Thus, there is an incentive to both limit hospital stays and
limit inpatient support and palliative services. These incentives may be
particularly devastating to dying people who are among the sickest of

16
Medicare beneficiaries with the most complex psychological and
psychosocial needs. In this context, it is often difficult to adequately address
and coordinate palliative and psychosocial support care prior to discharge.
Advocacy is needed to modify payment categories and payment levels to
ensure that there are resources to support a coordinated inpatient,
interdisciplinary team that includes psychologists and other professionals
skilled in addressing psychological and psychosocial needs.
Medicare coverage for hospice services is unfortunately quite limited. To
qualify for Medicare hospice benefits, individuals must be certified as having
a life expectancy of six months or less if the illness runs its natural course.
Thus, the hospice benefit is not applicable to many people with serious illness
with an uncertain course. A major limitation of the home health benefit of
hospice services has to do with the fact that beneficiaries must either be
homebound and need part-time or intermittent skilled nursing care or they
must require physical or speech therapy. Some dying individuals would
benefit significantly from home palliative care before they become
completely homebound.
Yet another primary concern about Medicare's payment scheme is that its
payment categories and payment levels for outpatient support services may
not appropriately recognize the time and resources required to care well for
the complex psychological and psychosocial problems presented by people
with advanced disease that is expected to prove fatal. For example, it is often
necessary for psychologists and other outpatient providers to meet with
individuals and families in the home or in the hospital. It is also necessary to
meet with other professionals in order to coordinate care. Unfortunately,
traditional financing mechanisms pay for circumscribed procedural services
(e.g., 50-minute session of psychotherapy) but not the actual time required
for home and hospital visits, the time devoted to coordinating care with other
professionals; the time required for the thorough and ongoing assessment of
individual and family needs; or the time involved with psychoeducational
interventions for persons, families, and other healthcare providers that are so
critical for quality end-of-life care. Advocacy is desperately needed for the
development of Medicare reimbursement policies that promote holistic and
coordinated care.
A third major area of deficiency cited in the IOM Report has to do with the
fact that the education and training of psychologists, physicians, and other
health care professionals fail to provide them with the attitudes, knowledge,
and skills required to care well for dying people and their families. As Field
and Cassel (1997) point out, current deficiencies in practice basically stem
from prior failures in professional education. Advocacy is needed to
encourage the allocation of federal funds to establish comprehensive
programs of undergraduate, graduate, and continuing education. These
programs should prepare psychologists and other health professionals to
understand and manage their own reactions to dying and death, to deliver
science-based interventions that are responsive to the needs of individuals
and families, and to communicate sensitively and effectively with dying
people and those close to them. Because quality end-of-life care is predicated
on effective teamwork and coordination, it is critical that professional
education programs utilize multidisciplinary approaches to training that
prepare professionals involved in end-of-life care to participate effectively in
multidisciplinary care teams organized to assist individuals and families at
the end of life.
A fourth area of deficiency that suggests the need for advocacy and policy
change has to do with the level and type of funding available for social,
behavioral, and health services research dealing with end-of-life issues. The
preceding section of this report outlines many areas in need of investigation.
However, these areas are unlikely to be pursued without leadership from

17
Congress as well as key officials at federal agencies responsible for directing
research funding for behavioral and biomedical sciences. Advocacy is needed
to encourage the National Institutes of Health (NIH), the Health Resources
and Services Administration (HRSA), the Health Care Financing
Administration (HCFA), the Agency for Healthcare Research and Quality
(AHRQ), the National Center for Health Statistics (NCHS), and other federal
agencies to provide leadership in organizing workshops, consensus
conferences, and other initiatives that serve to clarify what is known, what is
not known, what areas are of highest priority, and what types of funding
mechanisms are most likely to support the rapid development of knowledge.
As knowledge from basic research develops, advocacy will also be needed to
ensure that Congress and relevant federal agencies support the application,
dissemination, and transfer of new information through funding for
demonstration projects to test new models, funding for the development of
clinical practice guidelines designed to promote the replication of proven
interventions, and funding for national continuing education programs
designed to get the word out to professionals in the field. Additionally,
advocacy is needed to encourage NIH and other biomedical research groups
to gather information about death, dying, and end-of-life care in the context
of current clinical trials associated with potentially fatal diseases.
A fifth area of deficiency around which advocacy and policy efforts could be
organized has to do with the reality that most people in this country have not
yet learned how to confront and discuss the topic of death and dying in an
open and effective manner even when their culture or religion does not
consider this a taboo subject. Psychologists are in a unique position, by virtue
of their recognized expertise in facilitating the exploration and examination
of emotionally charged issues, to promote open discussions about death and
dying with individuals and with other professionals. Psychologists are also
uniquely qualified to advocate for the ongoing discussion of these topics in
the media, in the community, and in professional meetings.
A final area of deficiency that could become the focus of advocacy efforts
has to do with the fact that there is often inadequate care for people with
disabilities (National Council on Disability, 1998). Unfortunately, popular
beliefs among the non-disabled that they would rather be dead than disabled
sometimes combine with the medical industry's emphases on cost savings and
leads to decisions to withhold crucial services from patients with severe
disabilities.

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