Caregivers and Counselors: Their Value, Training and Personal Issues

By Tom Smith, Ph.D.

 

Even though many more people are choosing to die at home and often their caregivers are family or close friends, sometime during the hospice phase professionals are called in to help or take over responsibilities. Also, most people still die in skilled nursing facilities or hospitals surrounded by registered nurses, certified nursing assistants, social workers and of course, doctors. In addition to these professionals, there are support staff of housekeepers, porters, kitchen staff and administrators.

Outside of their obvious job descriptions, what role do these professional- paraprofessional and support staff have to play in relationship with the dying person? One often overlooked and crucial role is that these people can determine whether the dying experience is going to be institutionalized or personalized.

Death is much like birth: Miraculous, messy, smelly, spiritual, painful, entangled and complex. In the professional, institutional setting, the ideal is the family accepting and peacefully facing the inevitable with calm serenity; but, this is hardly the case. How often, under these circumstances, is dying compassionately facilitated by staff? More often than not, it is monitoring vital signs, hustle and bustle and not much peace or dignity and families are an afterthought or get in the way. How can the professional perspective on death be changed to meet the needs of the dying patients and their loved ones rather than the needs of the institution? Not facing or talking about death leaves a void for everyone.

More than any professional, it is nurses who are often at the forefront of ministering to the dying patient and family. They have a lot to offer in shaping the experience and can be instrumental in making it an opportunity for the person and family to take back the art of dying by encouraging them to assert themselves by asking for what they need. Just who is in charge; the hospital, doctors, insurance company, policy makers or the family? Who owns the experience? The real question is how can all these different providers positively impact the situation and give it back to the dying person and their family?

Palliative care nurses, in particular, have great power to become advocates that bring life unto death. They can embrace a role of compassion and understanding offering as much reassurance and information as possible to make the occasion a memorable one in the most beautiful way. After all is said and done, the family can recall the counsel and support of a person rather than the sterility and aloofness of an institution.

Nevertheless, institutions are established organizations and sometimes it is difficult to discern who to talk to about whatever concerns the terminally ill or their families have. The staff may be the last people with whom you may have contact and most interestingly, they too, do not want to face or talk about death. There you are dying and they ask if you are feeling better today!

It is crucial that all staff, doctors, nurses, social workers, housekeepers, porters, kitchen staff and administrators be educated and comfortable talking about death with the person dying and their family. What good does it do for anyone, the person dying, the family or even the caregivers to refrain from discussing the obvious, draw the curtains and take vital signs now and then until the end arrives?

The elderly, those with AIDS and terminal cancer or suffering from catastrophic accidents need human warmth, courage and compassion as they face their final frontier. At this time, everyone needs a support system. Staff education and development regarding end-of-life issues must be protected, enhanced and sustained in order for all to think and talk with some facility about death and to prevent burnout and turnover. In the setting where death can be an everyday occurrence, internal support groups can help sustain staff and nourish them as they give of themselves. Everyone needs to be educated and trained. Sometimes it is the housekeeper with a kind, caring and compassionate word that brings solace to ease the fears of the dying.

Caring for people at the end of there lives can be extremely difficult. Caregivers at all levels develop bonds that are elementary and so fundamentally human in nature with the most vulnerable people in the world. When death arrives, it can be helpful to have a memorial service to assuage and alleviate what can be daily grief. With proper education and training, staff can take comfort in knowing that they have touched someone’s life at a critically important, albeit, brief time.

Due to the increasingly aging population, the onslaught of AIDS, the ravages and consequences of war and other factors, more and more family counselors and other psychotherapists are choosing to work with the dying and their families. The need for professionals to take on this challenge is expected to increase in the future.

It is a difficult focus clinically, personally and emotionally. It not only challenges the therapist’s knowledge of their own personal relationship to dying and death, but also their own family and cultural dynamics surrounding dying and death. One of the greatest fears about dying common to all of us, including therapists, is that we become nothing and that our life is meaningless. Choosing to work with the dying and their family is a great commitment that requires a thorough awareness by the therapist of their own issues, or counter transference, surrounding any fears or unresolved grief in their own experience of death and bereavement. It is during these times, filled with intense emotions, that the personal problems of the therapist can be made manifest. If there are any unconscious issues in the personal life of the therapist, or a lack of awareness of their own vulnerability to a specific constellation of symptoms, it can cause great stress, cloud their judgment and may create problems that impede assisting the client family in dealing with the immediate death that they are facing. By embracing and owning their own anxieties and pain regarding death, the therapist can more confidently take on the role of “wounded healer” to guide the dying person and their family through their crisis.

Additionally, this is a difficult field to specialize in because in our death denying culture, where there is little dialogue about the end of life, there is, even in graduate school, hardly any didactic or experiential training that is necessary to learn not only about one’s own negative emotions, so to become at ease in working with the dying and their families, but also about other cultures and their preconceptions, fears, customs and world views about dying and death. What little training that is available focuses on things like advance directives, family issues and psychological or psychiatric conditions.

Such limited education and training is not adequate to provide the knowledge base to be proficient and skilled in working with those who are on the road to death. One must have specialized and interdisciplinary education about the dying process; the philosophy and practice of palliative and hospice care; difficult deaths such as suicide, murder, disfigurement or dismemberment; moral, ethical and legal concerns; grief, bereavement and particularly, in our pluralistic world, cross-cultural considerations. Not all cultures grieve the same and what may appear to be psychological disturbance or refusal to face the gravity of the situation is really culturally appropriate and expected behavior.

Without self-knowledge and training, the therapist may become subject to what Dorothy Becvar referred to as vicarious traumatization and compassion fatigue; conditions marked by difficulty separating work from personal life, lowered frustration tolerance, diminished sense of personal fulfillment with one’s career, self-destructive behaviors, feelings of incompetence, reduced general function and other factors. The grief, helplessness and possibly hopelessness that the professional feels with the family is real; nevertheless, the therapist must learn to empathize with the family’s suffering, but not take it on.

Moreover, to avoid burnout, compassion fatigue, vicarious traumatization and to maintain self-awareness, especially in the private practice setting, where one can become restricted in maintaining professional contacts, it is important to take breaks, process personal issues as they inevitably emerge, debrief with colleagues and recreate to remain fresh and available to the task. The importance and necessity of caring for one’s self cannot be overestimated; it prevents physical and emotional problems, renews the spirit, builds self-esteem and improves general functioning.

Such self-care may be difficult in the institutional setting, with the stress of working without support from coworkers, unrealistic expectations from patients and their families, constant grief, unrealistic expectations of performance from colleagues and possibly inappropriate motivations to work in the hospice field. A caregiver may not only be subject to what was described above, but also become frustrated by inadequate staffing, administrative demands, lack of recognition, multiple losses of patients and few opportunities for rest and recreation and consequently, lose perspective.

Despite the tremendous personal and professional challenges of working with the dying and their families, there are many intangible gifts of fulfillment and altruism that are a result of assisting in bringing, peace, comfort, understanding and dignity to the dying person and their family. When working with the dying, as long as one is able to be fully present to the dying process and stay centered, maintaining appropriate limits and boundaries to separate from the pain of the other, each death provides an opportunity to learn more about courage, humanity, humility and the fragility and value of life.

References

Becvar, Dorothy, S.; The impact on the family therapist of a focus on death, dying and bereavement; Journal of Marital and Family Therapy, October 2003.

Gross, Donalyn; Missing: death education for nursing facilities; Staff need to be trained in comforting dying residents, their families, and themselves; Nursing Homes, September 2004.

Kirchberg, T. M., Neimeyer, R. A., & James, R. K. (1998). Beginning counselors’ death concerns and empathic responses to client situations involving death and grief. Death Studies, 22, 99-120.

Riordan, R. J., & Saltzer, S. K. (1992). Burnout prevention among health care providers working with the terminally ill: A literature review. Omega, 25, 17-24.

Todd, Janelle, Baldwin, Celeste; An Opinion on Death and Dying: A Picture Worth Painting; Journal of Multicultural Nursing and Health, Summer 2006.

Werth, Jr., Ph.D., James L.; Richmond, Jessica; Counseling those near the end of life, The National Psychologist, p. 23, May/June 2007.