Many factors can impact the decisions people make at the end of life. Below is a categorized list of issues that have been identified in the literature as potentially influencing what particular decisions are made and the process by which such options are selected. The following should be considered a general outline of what a psychologist may want to explore when faced with a person who is trying to make an end-of-life decision, such as voluntarily stopping eating or drinking, withholding or withdrawing treatment, or receiving assisted suicide. No definitive guidelines for assessment in the terminal stages of life have been established and endorsed by a nationally recognized organization. Further, the material below is based on theory, anecdote, and clinical experience - it is not empirically based and needs to be researched and validated. There are some who would therefore argue that mental health professionals should not engage in anything that appears like an "evaluation" because the issues listed below and the manner in which they are explored are socially constructed. Therefore, the list below should not be interpreted as being prescriptive or as a standard of care. Nor should it be used to evaluate the adequacy of an "assessment" undertaken by a clinician.

The outline is based on a variety of sources in the literature (Block & Billings, 1998; Emanuel, 1998; Farberman, 1997; Farrenkopf & Bryan, 1999; Goldblum & Martin, 1999; Jamison, 1997; Miller, Hedlund, & Murphy, 1998; Muskin, 1998; National Association of Social Workers, 1994; Sanson et al., 1998; Veterans Affairs National Center for Cost Containment, 1997; Werth, 1999a; Werth, Benjamin, & Farrenkopf, in press; Werth & Gordon, 1998). Note that the process described is quite comprehensive and not every component will be relevant to each situation. It is also important to note that some authors (e.g., Sullivan, Ganzini, and Youngner, 1998) have been critical of a mental health professional merely assessing capacity for assisted suicide, and therefore acting as a "gatekeeper". Therefore, clinicians may want to view their role as helping to determine if the person has impaired judgment, not merely whether she or he has capacity to make health care decisions.

It should be emphasized that the following process is designed to be used with a wide variety of end-of-life decisions, not just those involving a decision that may affect the timing of death. For example, dying individuals will need to make decisions about what they want to say to other people; whom they want at their side during the dying process; what they want in their wills; whether they want someone to have durable power of attorney for health care for them and, if so, who; how they want to structure their final days; and so forth. Note that the list of ideas for how to proceed is focused on reviewing the terminally ill individual's decisional process since this document is not addressing the extremely complex topic of surrogate decision making.

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Preliminary Considerations

The following five steps are not a part of the actual outline but are intended to be general issues for professionals to consider.

1. Psychologists need to assess their own personal and professional beliefs about the dying process and different end-of-life decisions and consult with others regarding the degree to which their attitudes, values, and beliefs could affect or bias the review process.
2. If, following this personal/professional assessment and consultation, psychologists believe they can participate in end-of-life discussions, they must obtain appropriate training in relevant end-of-life-related issues.
3. If professionals plan on being involved in this area, they need to find at least one experienced colleague with whom they can consult during reviews to determine if the discussion and interpretations are appropriately comprehensive, if the psychologist's own values are affecting the process, or when referral to another professional may be necessary.
4. The dying person's health care team must be integrated into the review process, through asking them questions, providing them with information, and making appropriate referrals.
5. Throughout the review process professionals need to keep detailed case notes describing why they covered what they did and why other areas were not explored in more depth.

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Outline of Issues for Consideration

The issues to be considered are divided into four broad areas. Depending on the prognosis for the dying person, his or her physical ability to participate in an extended interview or multiple meetings, and the referral question(s), one or more of the last three sections may need to be reduced in emphasis or eliminated. Striking an appropriate balance between the person's physical condition (so that he or she is not over burdened by the review) and the psychologist's needs (in order for a comprehensive review can be conducted) will be difficult, and therefore may increase the possibility that the professional's values may enter into the situation (Fenn & Ganzini, 1999; Ganzini, Fenn, Lee, Heintz, & Bloom, 1996). However, if time and the client's condition permit, all of the following topics may be relevant and therefore should be considered areas to be explored, and the professional should utilize the consultant to determine if value judgments are interfering with making unbiased interpretations.

1. A necessary first step is to determine if the individual has capacity to give informed consent to participate in the review and, further, the capacity to make informed health care decisions.
   
   
   1. Conduct a Mental Status Evaluation, using standardized procedures and scoring, being especially vigilant for signs of dementia and/or delirium;
   2. Determine if the individual can perform all of the following tasks as they pertain to the review:
      
      
      • Understand and remember relevant information, including the fact that the professional will need to confer with members of the individual's health care team as well as the person's significant others,
      • Appreciate the consequences (i.e., costs and benefits) of different possible decisions,
      • Demonstrate a clearly held and consistent underlying set of values that provide some guidance for making the decision,
      • Communicate the decision and explain the process used for making it;
      
      
      
   3. Determine if the person can perform the following tasks as they pertain to his or her health care:
      
      
      • Understand and remember relevant information about his or her diagnosis, prognosis, and treatment alternatives (especially hospice and palliative care and advance directives),
      • The last three items in (b) above;
      
      
      
   4. If the person has the aforementioned capacities, then the professional should have the dying person sign a release of information form and the psychologist should then obtain medical records so that members of the health care team can be consulted. The records need to be available for the next steps in the outline, while the interviews with health care team members can take place either before or soon after the first interview with the dying individual. These consultations should review the team members'(1) perceptions of the individual's condition, prognosis, and treatment options, and (2) beliefs about what they told the person about his or her condition, prognosis, and treatment options. These meetings should take place before the process is considered complete because they will often lead to a need to clarify discrepancies between what the health care team reports and what the dying person states.
   
   
   
2. If a person has capacity to make decisions about involvement in the review and about his or her health care, the next step is to discuss the decision-making process the person has used, focusing on the issues that the individual stated (in 1c, above) were important parts of his or her thinking on the matter. Important areas to explore may include:
   
   
   1. Physical pain and suffering: Although most physicians have training in pain management and alleviating distressing symptoms, it is widely recognized that pain is undertreated and some symptoms are poorly controlled; therefore, even though the psychologist may not be an expert in physical symptomology, the degree to which physical pain as well as other aspects of suffering are involved in the person's decision making must be reviewed.
   2. Comorbid psychological conditions: Disruptions of thought and affect caused by the following conditions may not be severe enough to make a person incapable of making decisions, but they can significantly affect decision making as well as impair quality of life (note: the psychologist may utilize appropriate standardized assessment tools as long as the instruments can be justified because of a need to document a condition the professional has detected and are not used merely to rule out hypothetical problems):
      
      
      • Clinical depression and other mood disorders,
      • Clinical anxiety disorders (including acute stress disorder and posttraumatic stress disorder),
      • Early-stage dementia,
      • Fluctuating states of delirium and/or psychosis,
      • Personality disorders (note: the presence of a diagnosable personality disorder would not disqualify a person's end-of-life decisions; however, awareness of such a diagnosis would help the professional put other aspects of the discussion into the appropriate context),
      • Substance abuse (including accidental or purposeful abuse of/dependence on prescribed medication);
      
      
      
   3. Other psychological issues: In addition to formally diagnosable conditions, there are a host of other issues associated with the individual himself or herself that need to be reviewed:
      
      
      • Ambivalence or rigid thinking,
      • Fears (e.g., of pain, loss of mental status),
      • History of actual and perceived trauma and loss (including traumatic head injury),
      • Hopelessness and despair,
      • Internalization of societal rejection (e.g., self-hatred due to sexual orientation - "internalized homophobia"; internalized low sense of entitlement in women),
      • Religious, spiritual, and existential beliefs, expectations, experiences, and values; sense of personal meaning and fulfillment in life; philosophy of life and life values; assumptive world components;
      
      
      
   4. Fear of loss of control/loss of autonomy/loss of dignity: Research has indicated that these issues are the primary reasons given by people who want to take an action that may impact the timing of death and therefore they deserve careful exploration;
   5. Financial concerns: Issues associated with the cost of medical care may play a role in end-of-life choices so a discussion of the degree to which monetary matters are a part of the decision is important. (Note: there is some debate in the literature about whether the presence of financial concerns should disqualify a person's decisions. For some this is perceived to be a form of societal coercion while for others it is a natural consideration that may be seen as altruistic. It will be up to the professional, perhaps after peer consultation, to determine whether any financial concerns that are present are impairing the dying person's judgment);
   6. Cultural factors: As reviewed earlier, people of diverse backgrounds hold differing attitudes toward various end-of-life decisions so exploring ways in which culture may be affecting decision making must be included in the review:
      
      
      • Cultural expectations and traditions associated with decision making, end-of-life issues, and values,
      • Impact of personal characteristics, such as age, ethnicity, gender, economic status, and disability;
      
      
      
   7. Review possible underlying issues: Resolution of the following issues, if present, should not be expected, nor required. These areas are listed because of their potential for decreasing quality of life and impacting relationships:
      
      
      • Is the request for assistance in dying a form of communication and what is being communicated?
      • Is there a "split in the experience of the self" such that the person wants the sick part of the self to die but the healthy part to live? If so, what impact is this having on the decision making?
      • How is the person's ego functioning and related issues (e.g., coping and defense mechanisms, frustration tolerance, character scripts, locus of control and processing, cognitive style and biases, problem-solving skills, and ways of managing psychosocial transitions) affecting the decision?
      • How are the person's specific strengths, skills, and assets, vulnerabilities, and liabilities influencing the decision-making process?
      • Are rage, revenge, and helplessness involved in the process and what do they represent to the person?
      • Are guilt, shame, self-punishment, and atonement affecting the quality of life and the end-of-life decision?
      • Is the person viewing life as having already come to an end and how is this impacting the decision-making process and review?
      
      
      
   8. Overall quality of life: Generally speaking, how good does the individual believe his or her quality of life is at the present time, what does he or she envision for the near future, and what could change the present and prospective quality of life for the better?
   9. Other issues to explore: If these issues have not already been discussed, the following topics deserve consideration:
      
      
      • Has the person been suicidal in the past?
      • How long has the person been thinking about his or her end-of-life options?
      • How long ago was a decision made?
      • Why was the decision made when it was and, if there is a significant time gap between when the decision was made and when the review is being conducted, why is the discussion being held now?
      • If the person was going to follow through with the end-of-life decision, when would action take place and why then?
   
   
   
3. The next major area for review is the person's social support system. Releases should be signed so that the professional can talk with the important people in the dying individual's intimate circle.
   
   
   1. Consideration of significant others: How has the presence or absence of significant others impacted the person's decision making:
      
      
      • Review the beliefs the person has about the potential impact on the significant others (including those yet-to-be-born), if any, of a particular decision,
      • If the individual insists there are no significant others, including friends, discuss the degree to which this isolation (and, possibly, loneliness) may be amenable to change and the effect such a change might have on a decision,
      • Examine the degree to which concerns about being a burden on others (physically, emotionally, financially, etc.) are influencing the decision;
      
      
      
   2. Involvement of significant others: Discuss the presence of significant others in the client's life and consider suggesting that, if possible, they become involved in the decision-making process in some way:
      
      
      • If the individual is unwilling to have significant others involved, review the reasons for this decision and discuss the impact their lack of involvement may be having on his or her decision making,
      • If the person is willing to have significant others involved but has not included them to this point, discuss how such involvement will occur and how this plan impacts the review,
      • If the dying person is uncertain about involving significant others, discuss the issues until some decision can be made and then follow the first two bullets in this item, depending on which is most appropriate given the decision made,
      • If significant others have been involved, find out what the dying person believes took place in the discussions and whether there is any unfinished business,
      • Review if there has been any direct or indirect, subtle or overt, actual or perceived, pressure from significant others on the decision-making process;
      
      
      
   3. Interviews with significant others: Consider reviewing at least the following issues related to the terminally ill person with members of his or her support system; if any areas of concern arose during the interview with the ill individual, ask about them in this section as well:
      
      
      • Current functioning,
      • Recent changes in physical, mental, or emotional health,
      • Medical and psychosocial history, especially psychological problems and substance abuse/mis-use,
      • Typical pattern of adjusting to loss, change, and illness,
      • Personality style,
      • Reasons for considering particular options and the significant other's reactions to these reasons,
      • Areas of unfinished business,
      • Extent of financial concerns of all involved,
      • Other issues of concern related to the interviews with the dying person (e.g., if the dying individual's response to questions about his or her fears of dying and death need clarification or raised concerns in the professional, questions about this area can be asked of the significant others).
   
   
   
4. The final broad area that should be reviewed includes systemic and environmental issues. The goal here is to explore for the presence of any pressures from outside sources that may be impinging on the person's decision making.
   1. Indirect external coercion: To what extent are pervasive societal conditions and attitudes negatively impacting the individual's life and, perhaps, causing him or her to feel as if there are no satisfactory options that will provide for a decent quality of life, such as:
      
      
      • Negative biases toward older persons, persons with disabilities, women, members of minority ethnic groups,
      • Lack of funding for basic health care needs, inadequate resources for persons with chronic and disabling conditions, poorly trained professional caregivers, and other problems;
      
      
      
   2. Direct external coercion: Pressure to make a particular decision may be subtle or overt, may be actually occurring or merely a perception of the individual, could occur intentionally or accidentally, for example:
      
      
      • Are health care providers, administrators, and/or insurers/payers pressuring the client to make a decision that will cut expenses, open up space, or for some other reason?
      • Has a medical provider suggested scaling back treatment or offered some specific options, leading the person to believe he or she has been given up on or abandoned by professional caregivers.

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Role of the Psychologist after the Review is Complete

After conducting a review the professional must prepare detailed case notes. These notes should thoroughly document whether the psychologist believes the dying person has capacity to make health care decisions and, if so, whether there are any factors that are impairing the individual's judgment regarding the end-of-life decision. If no impairment is detected, the notes should describe the review process and highlight how potential areas of concern were covered and eliminated. If impairment is found, the notes should detail how the professional came to this conclusion and offer treatment recommendations, with the strong stipulation that the person needs to meet with a professional to determine capacity before any end-of-life decisions are implemented. Finally, appropriate referrals (e.g., to attorneys, spiritual advisors, etc.) should be included in the recommendations section, regardless of whether capacity is present.

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Use of Instruments when Reviewing End-of-Life Decisions

At times it may be helpful for a psychologist to use objective or subjective measures to gather more information. The use of such instruments must be carefully considered and the potential utility must be balanced with the person's physical state and abilities, tolerance for completion of questionnaires, and the concerns of the professional. The only instrument that may be warranted for use with most individuals is the MacArthur Competence Assessment Tool - Treatment (Grisso & Appelbaum, 1998) because its semi-structured format provides a framework within which assessments of capacity can be conducted.

The decision of which additional measures would be warranted will have to be made by the psychologist on a case-by-case basis, given the unique characteristics of the situation and the constellation of issues presented by the dying person. A comprehensive list of measures that may be appropriate for use with individuals at the end of life may be found in the Center to Improve Care of the Dying's "Toolkit of Instruments to Measure End of Life Care" (http://www.gwu.edu/~cicd/toolkit/time.htm). For suggestions of other instruments see Farrenkopf and Bryan (1999); Werth (1999b); and Werth, Benjamin, and Farrenkopf (in press).

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References

Block, S. D., & Billings, J. A. (1998). Evaluating patient requests for euthanasia and assisted suicide in terminal illness: The role of the psychiatrist. In M. D. Steinberg, S. J. Youngner (Eds.), End of life decisions: A psychosocial perspective (pp. 205-233). Washington, DC: American Psychiatric Press.

Emanuel, L. L. (1998). Facing requests for physician-assisted suicide: Toward a practical and principled clinical skill set. JAMA, 280, 643-647.

Farberman, R. K. (1997). Terminal illness and hastened death requests: The important role of the mental health professional. Professional Psychology: Research and Practice, 28, 544-547.

Farrenkopf, T. & Bryan, J. (1999). Psychological consultation under Oregon's 1994 Death With Dignity Act: Ethics and procedures. Professional Psychology: Research and Practice, 30, 245-249.

Fenn, D. S., & Ganzini, L. (1999). Attitudes of Oregon psychologists toward physician-assisted suicide and the Oregon Death With Dignity Act. Professional Psychology: Research and Practice, 30, 235-244.

Ganzini, L., Fenn, D. S., Lee, M. A., Heintz, R. T., & Bloom, J. D. (1996). Attitudes of Oregon psychiatrists toward physician-assisted suicide. American Journal of Psychiatry, 153, 1469-1475. Goldblum, P., & Martin, D. (1999). Principles for the discussion of life and death options with terminally ill clients with HIV. Professional Psychology: Research and Practice, 30, 187-197.

Grisso, T., & Appelbaum, P. S. (1998). Assessing competence to consent to treatment: A guide for physicians and other health care professionals. New York: Oxford.

Jamison, S. (1997). Assisted suicide: A decision-making guide for health professionals. San Francisco: Jossey-Bass.

Miller, P. J., Hedlund, S. C., & Murphy, K. A. (1998). Social work assessment at the end of life: Practice guidelines for suicide and the terminally ill. Social Work in Health Care, 26(4), 23-36.

Muskin, P. R. (1998). The request to die: Role for a psychodynamic perspective on physician-assisted suicide. JAMA, 279, 323-328.

National Association of Social Workers. (1994). Client self-determination in end-of-life decisions. In Social Work Speaks: NASW Policy Statements (3rd ed.) (pp. 58-61). Washington, DC: NASW Press.

Sanson, A., Dickens, E., Melita, B., Nixon, M., Rowe, J., Tudor, A., & Tyrrell, M. (1998). Psychological perspectives on euthanasia and the terminally ill: An Australian Psychological Society discussion paper. Australian Psychologist, 33, 1-11.

Sullivan, M. D., Ganzini, L., & Youngner, S. J. (1998, July/August). Should psychiatrists serve as gatekeepers for physician-assisted suicide? Hastings Center Report, 28 (4), 24-31.

Veterans Affairs National Center for Cost Containment. (1997). Assessment of competency and capacity of the older adult: A practice guideline for psychologists. Milwaukee, WI: Author.

Werth, J. L., Jr. (1999a). Mental health professionals and assisted death: Perceived ethical obligations and proposed guidelines for practice. Ethics and Behavior, 9, 159-183.

Werth, J. L., Jr. (1999b). Clinical depression and desire for death among persons with terminal illnesses. Social Pathology: A Journal of Reviews, 5, 22-26.

Werth, J. L., Jr., Benjamin, G. A. H., & Farrenkopf, T. (in press). Requests for physician-assisted death: Guidelines for assessing mental capacity and impaired judgment. Psychology, Public Policy, and Law.

Werth, J. L., Jr. & Gordon, J. R. (1998). Helping at the end of life: Hastened death and the mental health professional. In L. Vandecreek, S. Knapp, & T.L. Jackson (Eds.), Innovations in in clinical practice: A source book (Vol. 16) (pp. 385-398). Sarasota, FL: Professional Resource Press.

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