Issues for the Therapist to Consider when Exploring End-of-Life Decisions

By Tom Smith, Ph.D.

 

Facing the end of life usually compels the dying person, if they are capable, to face many issues and make many hard decisions. The therapist with the proper training and sensitivity can assist those who are dying in exploring what issues are particular to that person and what specific decisions must be made. This might include stopping eating or drinking water, withholding treatment; e.g., refusing the pain and perhaps the futility of chemotherapy and letting a cancer run its course, the possibility of a hastened death or even assisted suicide. Moreover, the dying person may have some “unfinished business” with family members or others in their social circle that they may want to complete; e.g., forgiving people who have hurt them or telling another of their heretofore unexpressed love or dissatisfaction. Additionally, the dying person may simply want to review their life and talk about their accomplishments or regrets. This would be an uncomplicated dying process. Nevertheless, many questions need to be asked.

Most of what we can learn comes from anecdotal evidence, long time experience and lastly theory. There are at this writing no specific or definitive guidelines from any organization for assessment of end-of-life issues. Here is a great opportunity for much research to be done in this area to create a body of empirical evidence, particularly as the “baby boomer” generation deals with the longevity of their parents and their dying process and then ultimately their own demise and what that may entail. Currently, there is nothing prescriptive or understood as a standard of care available to the clinician that pursues this area of interest. However, training in this specialty is available and there are certain protocols that can be called on when working with the dying and their families (not only next of kin, but also friends, colleagues and neighbors).

Before even taking on the case of a dying person, the therapist must assess their own personal and professional beliefs about dying and death and see if they are up to the task. No matter how experienced or how many years in practice, it is absolutely imperative that the therapist seek specific training in end-of-life issues to inculcate the core competencies that are necessary for an effective encounter with the dying person and their families. So, the proper temperament and training are necessary. Additionally, it is of the utmost importance to have a consulting relationship with an experienced and trusted colleague to insure that the clinician’s attitudes, beliefs (this includes religious or spiritual creeds) and values are in line with those of the dying or at least that the therapist can keep them from intruding on those of the dying. For example, one would not want to bring up issues about God or the afterlife with a person of the likes of the renown scientist, Carl Sagan who on his deathbed believed that the end of life was just that … the end … no afterwards … not even oblivion.

Any review or assessment of the dying person’s situation must include all allied health care providers involved as a team that works together to ask the important questions, provide needed information and make proper and relevant referrals. Needless to say, detailed, comprehensive case notes must be maintained so that everyone knows what is going on, what has been asked or not and the reasons why something has been addressed or not.

One critical role of the clinician is to determine if the dying person has impaired judgment or not and if they are capable of giving informed consent. This is a crucial first step that will guide the rest of the relationship and process. Also, every case is unique and not every protocol in the “kit bag” may be appropriate; therefore, one must be prudent and selective in what can or cannot and what should or should not be done.

To sum and put things succinctly: Every person’s case is different however certain protocols must be followed; among them, determining informed consent, keeping scrupulously good notes, signing releases for medical notes and consultation (including family members), clear diagnosis of comorbid psychological conditions, assessment for suicide, and finally, whether the patient is being coerced in any way by the system of health care providers, administrators, insurers or family members to make a decision regarding anything.

So, a mental status exam is an appropriate first step. Is the dying person oriented in time and space … do they know who they are? Can they understand, remember and appreciate their situation and the decisions that need to be made? Or, are they suffering from dementia or delirium or otherwise out of touch with reality? Do they know that they are dying? If the dying person is aware and capable, the paperwork needs to be signed; i.e., releases of information to talk to others, informed consent, memorandum of understanding, etc. This will determine the next steps of the treatment plan or better said, the assisted process ending in death.

Most importantly, any physical or mental pain must immediately be addressed. Suffering is not necessary. Pain is under treated in the United States and the therapist may have to speak up to the allied health team regarding the proper treatment of any suffering. Comorbid conditions in the psychotherapeutic domain need to be diagnosed and assessed to determine their impact on the situation; for example, clinical depression, excessive anxiety (currently, in the case of returning vets, PTSD), dementia, psychosis, personality disorders and/or substance abuse.

Adjunct psychological issues regarding fears, internalized hatred (ethnic and racial minorities, homosexuals, socioeconomic condition, etc.), hopelessness and despair and religious or spiritual beliefs and the dying person’s values, philosophy of life and death, or lack thereof, need to be identified if the person is capable. These issues, too, will direct the course of the dying process.

Other obvious issues that may fall by the wayside (because they are so obvious and thus, remain unaddressed) are the fear of the loss of control over the situation by the dying person, financial issues and cultural and family expectations. Sometimes issues that have lain unaddressed for perhaps many, many years or a lifetime may emerge. This may include residual rage, revenge, helplessness, guilt, shame, or the need to abase or punish one’s self and the feeling that the death is “deserved”.

Due to cultural or social taboos or injunctions, issues surrounding the desire to die or commit suicide may be overlooked or even avoided. This is an error. Is the dying person secretly planning to kill themselves or enlisting another to help in killing themselves? Is the dying person rational enough and do they have the ego strength to take a look at this stuff?

Dying is something a person usually does not do alone, but in concert with others. This is where the signed release to talk to others is crucial. Besides the healthcare team, who are the dying person’s significant others, or do they even have anybody in their life with whom they are intimate? Is the dying person lonely or suffering from anomie? How does their social situation impact their decision-making process? Do they want others to be involved in their situation? Is the dying person specifically pushing people away to avoid the emotions that may arise; e.g., guilt over leaving loved ones, being a burden to others or being a financial drain on the family. If this is so, the therapist can take the time to explore these issues with the dying person to ascertain whether this is truly what they desire … that the dying person is making the “right” decision for themselves. If the dying person recognizes that they do indeed want others to be involved, it is prudent to ask them how they want others involved. It may be that these decisions be recorded (video, audio, on paper) so others understand that this is the directive of the dying.

If significant others are to be involved in the process, it may be important to interview them to assess their level of emotional functioning and ability to handle the situation or any physical or psychological problems that may interfere with the comfort of the dying. Moreover, it may be necessary through skillful and sensitive questioning to see if there are any financial issues or other concerns that may lead to coercion of the dying person to make decisions that are not in their best interest.

Coercion is an issue for all concerned and involved with the dying person. It may be indirect, external coercion; e.g., negative biases by family or healthcare providers regarding older persons, persons with disabilities, women or members of some minority groups or lack of funds for appropriate care … the poor. Worse still, there may be subtle or overt direct coercion by the “system” (nurses, administrators or insurance companies) or greedy family members for the dying person to “get on with it and die already”. Any sign of abuse must be made clear and those suspect confronted.

After such a review as outlined above, it remains for the therapist to make the appropriate referrals and to decide how they will continue or not to participate in the dying process to its conclusion and aftermath.

References

https://www.gwu.edu/~cicd/toolkit/time.htm

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.

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.

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

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.

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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 clinical practice: A source book (Vol. 16) (pp. 385-398). Sarasota, FL: Professional Resource Press.