INTRODUCTION TO THE PROPOSED MODEL OF CARE FOR ADOLESCENTS

WITH LIFE THREATENING ILLNESS

Primary Components

One of the most important sources of support for this family was, according to their reports, the professionals who worked with them over the course of the process. Their experiences with physicians, social workers, and nurses were critical. From the family's perspective, the qualities that they appreciated most in the professionals were their caring and empathic responses, their honesty and forthrightness about the disease prognostic information, and the opportunities given to them to discuss any information that they chose to talk about. They stated that having the opportunity to talk about how to deal with all of the important aspects of this experience was essential.

Analysis of the elements of professional support identified by Jay and his family reveals certain essential components. First, there was a willingness and ability to discuss with professionals all of the stressful factors of his disease process. Within these discussions, professionals were able to offer opportunities to process feelings. The second essential component that appears to be salient was that of meaning making. Religious beliefs stood as an organizing principle of hope for he and his family. Third, Jay's need to help others and contribute to his community were honored and accepted by those who worked with him. His beliefs were not discouraged, thus sustaining his healthy self-image and enhancing his ability to cope with the effects of his cancer.

The model of care that I propose is centered on these important components of open communication and meaning making. The model challenges traditional beliefs and attitudes that have emanated largely from the medical model of care. Traditionally, care of the dying and their families has emphasized, "attempts to fix" the problems that arise from the inherent trauma. There was an emphasis on children "dying with cancer," not "living with cancer." Little attention had been paid to emotional aspects of living with the disease, i.e. the value of the period between diagnosis and death. Accomplishing developmental tasks, having a rewarding family-life, and planning a future, all within the context of death, are issues equally important for the child who will die of cancer as for the child who will survive¹ (Van Dongen-Melman, & Sanders-Woudstra, 1986, p.165).

Care for the dying and their families utilizing the proposed model, which emphasizes the connection of mind body and spirit, challenges the traditional psychotherapeutic approach. In addition to problem solving, the holistic approach provides a form of therapeutic support that focuses on maintaining quality of life while viewing the dying process as one that necessitates finding ways to live more fully. The mind-body-spirit approach, unlike the medical approach, is one that includes a spiritual dimension of care which seeks meaning out of the suffering that is inherent with terminal illness. The role of mental health professionals is to, in a sense, offer himself/herself as a mirror upon which the patient can reflect any and all existential concerns. Unlike the traditional role that requires mental health professionals to assist clients, current models emphasize a role in which one accompanies the patient on the journey towards death.

The medical model of care for the dying has been challenged by paradigms that view the process of dying from a less linear perspective. Current paradigms focus less on identifying the dying stage and more on encouraging the patient's moving through it. Emphasis is on promoting acceptance of each aspect of the dying experience as a vital part of living. The role of the mental health professional, therefore, becomes one of empathic presence rather than problem solver through the dying process. The role is viewed as active and vital, even though it does not include stopping or fixing what is happening. On the contrary, it provides a new definition of "doing" (Taylor & Ferszt, 1990).

Being present as a mental health provider supports the patient in tolerating the "not knowing" that accompanies this existential plight (Larson, 1993). Being present with a dying patient necessitates sitting with their pain and providing a "holding environment" (Winnicott, 1965) in which the patient feels secure enough to examine his/her world. This is done by creating an environment in which qualities of trust, acceptance, validation and unconditional positive regard provide an opportunity for patients and their families to discover, embrace, accept, and express the true nature of their being (R. DeMers, personal communication, June, 1995).

Maintaining a sense of presence with a dying person and their family requires that mental health professionals allow themselves to be vulnerable. This approach emphasizes the human relationship, with its sense of personal connection, as an integral aspect of working with adolescents, like Jay with life threatening illness.

The proposed model is based on the premise that empathic presence creates a level of trust that enhances an adolescent's ability to engage in discussions relating to death and dying and suffering. This type of conversation provides the context for assisting the terminally ill adolescent in making sense of their experience. By helping the adolescent develop strategies for continuing to make a difference in their world, they gain a sense of purpose and meaning that allows them to cope more effectively with their illness.

Implications of the Role of the Professional

The ability to connect with this population on a deep emotional level is a crucial element of being able to work effectively under this model. Engaging in such in-depth connections with empathy and compassion, however, may produce anxiety for the mental health professional as he/she may be forced to struggle with his/her own issues related to life and death. Emotional pain from the patients and their families may well trigger grief responses from mental health professionals. It is vital that the professionals identify their own pain and find ways to process countertransferential responses through professional supervision, peer support groups, or their own psychotherapy.

Maintaining the quality of life of an adolescent with life threatening illness can be a challenge for all members of a care team, but this model suggests that it is also the vital foundation for effective care. For Jay, quality of life meant maintaining normal routine and feeling that he was still contributing to the rest of the world and making a difference. What this case emphasizes is the importance of identifying the adolescent's own philosophical stance and making care decisions based on this perspective. If the adolescent is given the opportunity to discuss their philosophy of care and quality of life issues, the role of the professionals then becomes to honor this perspective throughout the treatment process.

Jay's family describes the members of the care team who worked with Jay as supportive because throughout the process they shared Jay¹s perspective of maintaining his quality of life. Jay was very much the one who led the decision making process during his illness, openly discussing his beliefs and values. There are numerous examples of how Jay stated his beliefs about life and death and his insistence that these be honored in decisions relating to his care. From the initial decision to forgo amputation and throughout his disease process to his final decision to discontinue treatment and accept his death, Jay's "Never give up" philosophy was honored.

Some authors have depicted adolescents as limited in their capacity to provide such information. For example₁ Corr & Doka (1996), leading researchers in the topic of adolescents and death stated that the goal for adults who work with adolescents should not necessarily be to expect the adolescent to achieve a "mature" concept of death. Other professionals have alluded to discussions of death with adolescents facing life-threatening illness with a similar cautionary attitude. For example, Stevens & Dunmore (1996) propose that adolescents with cancer feel a greater sense of control if they discuss issues related to death in terms of "what if,' you were dying, thus implying that they are less willing to consider the issue in the present tense.

This case study suggests that an adolescent is not only capable of exploring, but also has developed deep convictions and ideas about the profound issues related to life and death. Jay approached the topic of death in a very mature fashion from a very early age. The proposed model suggests that if given the opportunity to build a trusting relationship with the psychologist, the adolescent is more likely to discuss these issues in depth.

Using the proposed model of care to work with someone like Jay who is dying is to journey side by side without a clear destination, as opposed to the more common process of directing them toward some specific goal. Journeying side by side with Jay and his family was a life-changing experience for me and in re-telling this story, I. seek to honor Jay and share with others a point of view about care of the dying.