CHARGE B: Examine the Role of Psychology in End-of-Life Decisions and Quality of Care Issues

Clinical Roles
Assessment Activities
Clinical & Counseling Activities
Advocacy Activities
Emerging Models of Service Delivery
Conclusion
Recommendations
Education and Training Roles
Education of the Profession
Education of the Public
Conclusion
Recommendations
Research on End-of-Life Issues
Ethical and Methodological Issues
Priority Areas for Future Reseach
Conclusion
Recommendations
Policy Roles
Conclusion
Recommendations

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.

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 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)

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 (please note that a more detailed list of issues to consider when reviewing end-of-life decision-making can be found in Appendix F):

• 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., 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.

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 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.

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 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).

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).

Psychologists have much to offer in working with dying persons and their families and loved ones. They receive excellent training in assessment of cognitive and overall psychological functioning and depression. They have strong intervention skills, the ability to promote decision-making and problem solving, the skills to clarify values and communication, and experience in providing brief therapies. In addition, they can work with issues of anticipatory mourning, cumulative loss, unresolved grief, and stress secondary to illness and loss. They have skills in listening and communicating that permit them to be excellent advocates for dying persons and their families. Finally, psychologists can bring an in-depth understanding of psychological factors to multidisciplinary teams working with dying persons, their families, and caregivers. Specialized training and supervised experience in end-of-life care, however, is a prerequisite to providing any type of service associated with end-of-life care.

1. Develop a directory of psychologists interested and involved in end-of life issues, specifying their activities in education, research, practice, and policy; this could be accomplished by adding an end-of-life-issues interest code to the standard APA membership questionnaire. This directory, which can appear on the APA website can be a useful tool in helping psychologists, other professionals, and the public to identify potential consultants in the field.
2. Produce and disseminate a case book with examples of terminally ill people and their families facing difficult end-of-life decisions that illustrate the ethical issues associated with these cases and provide models for working with these situations. This case book could serve as an educational tool for psychologists, helping them to understand the complexities central to working with people at the end of life. It should include cases of individuals and groups who are particularly likely to be perceived and encouraged to perceive themselves as more expendable and less deserving of continued life: e.g., people who are older, people who are poor, women, people of color, gay men, lesbians bisexuals, people with disabilities.

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 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, 1999).

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.

Psychology as a discipline has the potential to contribute unique insights and make valuable contributions to care at the end of life. However, the discipline must find ways to incorporate dying, death, grief, and loss into existing courses at the graduate and undergraduate levels. Individual psychologists wishing to work in this arena must find ways to get ongoing professional education in end-of-life issues. Interdisciplinary initiatives are fruitful ways of learning in this field. Psychologists can also make significant contributions to community education.

1. Conduct a survey to assess the amount and type of educational experiences that undergraduate and graduate programs in psychology offer in the area of dying, death, and bereavement.
2. Develop a faculty guide for integrating end-of-life issues into psychology curricula at undergraduate and graduate levels. The faculty guide should provide the rationale for including end-of-life issues in psychology courses, emphasize key content in end-of-life care, discuss strategies for integrating information into courses commonly taught, review strategies for developing placements for practicum students, provide examples of interactive exercises, and present discussion topics to be used for building awareness and processing students' affective responses to difficult end-of-life situations.

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.

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). 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.

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 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.

Psychologists' ability to design research, analyze qualitative and quantitative data, publish results, and do meta-analyses as results accumulate are powerful skills for advancing understanding of this complex and difficult stage of life. Designing, conducting, analyzing data, and presenting the results of research are major strengths that psychologists can bring to the study of the end-of-life period. However, carrying out research at the end of life has special ethical concerns that must be addressed. In spite of these, there are multitudes of questions that deserve to be addressed in systematic research programs. Interdisciplinary research in this area would be especially helpful.

1. Develop and publish a research agenda. The American Psychological Association, in collaboration with other behavioral and social science organizations and key staff of relevant federal agencies, should convene a group of research scientists for the purpose of articulating a phased program of research to address key end-of-life issues. APA could publish this research agenda along with potential funding sources in the Monitor, in division newsletters, and on the APA website. In addition, APA could promote the development of federally funded requests for proposals based on the research agenda.

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 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 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 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.

There are numerous opportunities at federal, state, and local levels for psychologists who are interested in assuming advocacy or policy roles to advance the quality of care at the end of life. Psychologists can promote a wider societal commitment to caring well for people who are approaching death by working with other health care professionals and managers, researchers, policymakers, funders of health care, and the public at large to improve policy and practice. The goal of widespread quality care at the end of life is attainable, but realization of that goal will require many system-wide changes in attitudes, policies, and actions.

1. Develop a federal policy agenda to improve end-of-life care. The APA Public Interest Policy Office, in collaboration with a multidisciplinary group of experts in the area of end-of-life care, should develop such an agenda, outlining and prioritizing advocacy objectives and strategies designed to promote legislation and federal agency action directed toward the improvement of care at the end of life.
2. Solicit input from division interest groups with respect to end-of-life policy.
3. The APA Public Interest Policy Office, in collaboration with a multidisciplinary group of experts in the area of end-of-life care, should develop and publish an orientation and information packet for psychologists interested in playing policy roles to advance the quality of care at the end of life at federal, state, and local levels.

Introduction
Section 1 | Section 2 | Section 3 | Section 4
References
Appendix A | Appendix B | Appendix C
Appendix D | Appendix E | Appendix F
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