Use of the Stages of Change Transtheoretical Model in End-of-Life Planning Conversations

Introduction

The scholarly literature on end-of-life care reveals that patients and health care professionals, including social workers, nurses, and physicians, tend to avoid discussions about preparation for end-of-life care.^1,2 Their reluctance may stem from feeling unprepared to conduct these discussions^3,4 because of personal discomfort ⁵ and/or lack of appropriate professional training for this task. ⁶ Similarly, patients may avoid discussions about their impending death because of lack of recognition of the seriousness of their illnesses, a desire to consciously conceal their concerns, ⁷ or lack of readiness to discuss planning for end-of-life care. ⁸

Recent studies of the social workers' role in preparing patients for end-of-life care reveal that they often play a critical role in helping patients overcome barriers to these discussions, including clients' discomfort with end-of-life issues, their lack of knowledge about end-of-life planning, and their beliefs about having control over their lives.^9–11 Yet these studies, do not provide a specific framework, scripting, or practice guidelines to assist health care professionals in initiating end-of-life planning with patients. A review of the end-of-life literature in social work by Black ¹² found that most studies on end-of-life communication lacked guidelines on the process of end-of-life planning with clients and how such conversations take place. A report of the Social Work Summit on End-of-Life and Palliative Care recommends the development and dissemination of an intervention tool kit appropriate for end-of-life clinical practice. ¹³ The purpose of this article is to apply the widely used Stages of Change Transtheoretical model ¹⁴ to frame social workers' initiation of end-of-life care planning discussions in a controlled trial of an Advanced Illness Care Coordination Program (intervention). ¹⁵ The specific aims of this article are to: (1) provide a literature-based framework for end-of-life discussions and (2) prepare health care professionals who work with advanced illness populations to initiate end-of-life planning discussions.

The Advanced Illness Coordinated Care Program (The Intervention)

The Advanced Illness Coordinated Care Program (AICCP) is designed to assist patients and families to optimally manage life with an advanced illness. The intervention provides beneficial guidance and structure for the clinician, including the opportunity for just-in-time application of appropriate clinical skills. The model has three components: (1) health counseling, (2) education, and (3) care coordination. The counseling component builds on the impact of health-related stressors on daily activities and quality of life. Interviews are designed to encourage and guide discussion of the most pressing problems that patients and families are confronting. Education and care coordination are added to the model on an as-needed basis.

In a controlled trial of the intervention in a large health care system, ¹⁵ participants lived in community-based settings (i.e., a home or apartment) and had one of four advanced illnesses: cardiopulmonary disease, cancer, end-stage renal disease, or congestive heart failure. The life expectancy of participants in the intervention was 12 to 18 months, meaning they were not imminently terminally ill. The intervention was delivered in outpatient health care settings. Social workers trained to deliver the AICCP intervention as part of the study met with research staff throughout the study to ensure fidelity in the delivery of the intervention. A major focus of meetings was a detailed account of patient and family interviews. Guided by the close conceptual and practical fit of the process of initiating planning discussions with the Stages of Change Transtheoretical model of change, ¹⁴ we use this framework to illustrate how social workers introduced end-of-life care planning topics through case examples.

Application of Stages of Change

Consistent with recommendations in the literature,^5,6,16 a central goal of the health counseling component of the intervention was to enhance patient readiness to engage in end-of-life planning. Content was organized to promote earlier, more structured discussions, allowing clients more time to prepare for end-of-life care. This approach also addresses concerns that patients may be misinformed about end-of-life care and thus prefer to discuss these plans earlier in their relationships with providers. ¹⁷

The Stages of Change model posits five progressive stages of behavioral change: precontemplation, contemplation, preparation, action and maintenance. At the precontemplation stage, a person has no intention to change. During contemplation, a person thinks about the possibility of change. Preparation is the stage at which someone intends to take action, but is not yet ready to make change. In the action stage, behavior is modified enough to produce clinically significant change. Maintenance is the stage at which new behaviors are maintained. ¹⁴

Research supports the notion that patients engaging in end-of-life care planning pass through these stages of change and can be categorized into a stage based on their planning progress.^18,19 The Stages of Change model has also been applied to end-of-life planning for patients who are uninformed about advance directives. ²⁰ However, these applications of the model do not account for situations that involve ambivalence about end-of-life care planning. To begin to address this gap in the literature, we present a series of examples in which patients may not intend to engage in planning, and therefore, present more difficult challenges in clinical situations.

Although earlier and ongoing planning for end-of-life care is endorsed by experts and advocates,^21,22 many, if not most, Americans are unfamiliar with the concept and the process of end-of-life planning. Prochaska ¹⁴ posits that individuals in a precontemplation stage underestimate the benefits of change and overestimate the costs of change in behavior. Therefore, because Americans are not often exposed to end-of-life planning, it stands to reason that the potential benefits of this type of planning would be underestimated. When they participated in the intervention, the majority of the participants lived longer than a year and were not imminently terminal, so it was not surprising that participants were in the precontemplative and contemplative stages of change. It follows that initiating end-of-life care planning discussions generally relate to the first two stages of change in the Stages of Change model. Therefore, the examples that follow focus on precontemplation and contemplation.

Clinicians may fear raising taboo topics, such as end-of-life care and planning, due to concern that they will not demonstrate sufficient respect for patient self-determination. However, the spirit of this approach is to offer clients an opportunity to explore change (e.g., unwillingness to plan) rather than boldly suggest that the patient or client ought to change. The strategy proposed here is to invite patients to move between stages of precontemplation and contemplation, even if only temporarily. For example, patients coping with serious illness often consider whether to share their health status with family, loved ones, or potential health care agents. Most patients will eventually discuss these issues, especially with clinicians whose focus is on supporting clients and families throughout the illnesses.

Prochaska's observation that people tend to underestimate the benefits of change often applies in such instances. Many patients wish to avoid burdening family and friends with potentially unsettling news about their compromised health. Therefore, they give little thought to the range of supports family might provide to help them adapt to losses caused by illness. By inviting a person to reservedly consider alternative approaches to addressing concerns, clinicians can more reliably ensure that patients understand the benefits and risks of their choices to communicate with others about their health. This exploration of different perspectives provides patients an opportunity to benefit from an informed decision.

If clients are convinced the clinician's discussion of end-of-life care planning is in their interest, they may tolerate discussion and use the opportunity for a reappraisal of decisions. The goal of the reappraisal is designed to promote informed end-of-life care planning and self-management of ongoing illness. The strategy is to temporarily move to the contemplation stage of change (discussing pros and cons) from precontemplation status (no change intended). Some clinicians may feel uncomfortable suggesting that clients rethink decisions regarding sensitive topics, such as end-of-life care issues. The worker, however, is merely asking the client to review decisions with new information in mind. Sharing the development of an agenda for planning creates a collaborative environment and the clinician's fears about manipulating a client can be minimized. Using the important social work skill of discussing taboo subjects may allow the client to open up and discuss end-of-life issues and allow the worker the opportunity to partialize these concerns with the client.

Case Example A: Brief Bio

The first example is based on a patient who had a relatively open communication style during the intervention visits. Client A is a 73-year-old female with a diagnosis of stage IV cancer with metastasis to the lung. Client A lives alone in her own home and is currently continuing chemotherapy treatment for her cancer diagnosis. Client A is generally open to the social worker and is usually willing to hear what the social worker has to say. She also indicated through verbal and nonverbal expressions that she trusted the clinician. To date, Client A had not been as open with her family regarding her prognosis (6 months to a year) as she was with the social worker. Client A was concerned that family members would treat her with “kid gloves” and have her “6 feet under” before the day ended if she revealed her prognosis to them.

Case Example A: Clinician Intervention and Outcome/Application of Stages of Change Model

The social worker was able to engage Client A in a discussion around end-of-life planning by discussing the pros and cons of planning, without directly asking Client A to change her behaviors. The social worker presented Client A with various potential positives, including the receipt of family help and support with practical issues as well as family knowledge and understanding of how to help Client A if the need should arise. The social worker also presented Client A with possible negative consequences of a family discussion, including the possibility that her family may not react well and might become anxious and controlling. Client A was able to process the information that the social worker provided and stated that she would give it some further thought.

Although Client A did not immediately change her perspective and decide to discuss her prognosis with her family, she did agree to give it some further thought. This further thought, accompanied by the discussion she had with the social worker, will allow Client A to make an educated decision about discussing her prognosis with family. This might be characterized as a shift from the pre-contemplation stage to the contemplation stage per Prochaska's model.

The clinician was given permission to assist the patient in moving towards the contemplation stage of change from the precontemplation stage. In addition to providing the client with an opportunity to participate in, or control, the agenda, other aims were achieved. These included learning about the client's capacity to tolerate change, providing the client with additional evidence that her relationship with the social worker was collaborative rather than prescriptive, and introducing a process for promoting readiness to discuss difficult topics.

An advantage of using the Stages of Change model alone, or as part of the clinical repertoire, is that acknowledgement of a precontemplation stage precludes automatic dismissal of people as incapable of change. It also provides a perspective that allows clinicians a comfortable position from which to invite reappraisal and create a basis for change that did not previously exist.

Many patients are more hesitant to discuss end-of-life issues than Client A. Some provide rationales for maintaining a pre-contemplative stance vis-à-vis planning (e.g., “I need to sell this house, first. Then, I'll deal with death.”). Patients also may contend precontemplation (intending no change) fits their situation (e.g., “I am not going to die, my prayers and prayer group are working for me!” or “I'm not going to die; acupuncture gives me an advantage over dying.”). Others are adamant that planning is not appropriate (e.g., “Why should I think I am dying? Why I have more color in my cheeks than the doctor!”)

An assumption underlying these reactions is that discussing and planning for the unforeseen in serious illness is often equated with discussing a patient's demise. This, in fact, was one of Client A's concerns in terms of discussing prognosis with her family. This assumption does not have to be shared by clinicians. End-of-life care planning focuses on living as much as or more than dying. Many topics associated with end-of-life planning, such as advanced directives, focus on things that patients' desire while living as well as things that they would rather have withheld. Sometimes clinicians may fear that patients will become emotionally destabilized and more difficult to manage. Therefore, they avoid initiating any aspect of planning. ²³ Such concerns can be managed by obtaining consent to discuss end-of-life care matters individually as they arise. In example two, one way to reframe reluctance to plan and obtain agreement is provided.

Case Example B: Brief Bio

Client B is a 66-year-old male with a diagnosis of chronic obstructive pulmonary disease (COPD). Health care providers stated that Client B was unwilling to discuss his health prognosis (1 year to 18 months) with medical staff or family. Client B expressed concerns regarding his comfort level, including shortness of breath and increased anxiety about suffocating to death. He stated that he wanted all measures to be taken to revive him if he had difficulty breathing because he feared suffocating to death more than anything else. Although Client B voiced these concerns to staff, he was unwilling to discuss the assignment of a health care proxy or the completion of advance directives. Medical staff were concerned that Client B would not have his wishes adhered to should he have a breathing crisis without an advance directive to support his wishes. Client B was focused on remaining positive about his health and chose to avoid conversations about death, including advance directives, with family because he saw such discussions as an admission that he was dying.

Case Example B: Intervention and Outcome/Application of Stages of Change Model

Client B was ambivalent about discussing advance directives because he thought this indicated that he believed he was dying. He did not want to convey this to his family. The social worker was able to engage Client B in thinking about advance directives by focusing on his anxiety about not being able to breath rather than focusing on dying. Using the strategy identified previously, the social worker explained how advance directives and health care proxy assignment could be used to address the client's breathing concerns, which gave the patient the opportunity to shift from precontemplation to contemplation to assign a health care proxy. Client B was willing to appoint a health care proxy to address medical crises related to reviving him during a breathing crisis, but Client B was not willing to discuss do-not-resuscitate orders related to the possibility of death. Prior to the discussion with the social worker, Client B did not understand that advance directives could include the assignment of a health care proxy and his own desires for comfort measures. Client B was afraid of being unable to breathe and left to die if he had a do-not-resuscitate order. Information was provided and Client B was able to shift from precontemplation to contemplation and assign a health care proxy who understood his wishes regarding treatment if Client B had difficulty breathing.

In this case, more discussion of advance planning may be warranted because Client B may decide he wants more information. The act of weighing alternatives about advance planning may also have adverse effects, such as complicating situations for patients or increasing ambivalence or anxiety. Deciding to proceed with end-of-life care planning is a shared responsibility for clinicians and clients. Clients with anxiety/fear about these topics can be reminded that they can open and close these conversations as they feel they need to.

Discussion and Conclusion

As with all clinical interventions, the approach described here may not be appropriate for all patients. Patients with an external locus of control, a fatalistic outlook, or those who adhere closely to specific religious or cultural beliefs may eschew planning in general or end-of-life care planning in particular. ²⁴ A larger shift in personal belief systems would be necessary before they change their behavior around end-of-life care planning. The focus here was looking at patients' ambivalence about change and their underestimation of the benefits of end-of-life care planning because they have not had enough exposure to the process.

Using the Stages of Change Model ¹⁴ might be useful for professionals dealing with these types of taboo issues or those feeling uncomfortable initiating discussions of this sort. This model provides a flexible way to handle difficult topics, allowing clinicians and patients to discuss pros and cons and/or educational information without having to delve deeper until the clients feel ready to do so. The framework has the potential to open the door to deeper conversations through trust strengthening conversations between patient and clinician.

While the emphasis in these examples was on the first two stages of change, Prochaska describes a cyclical pattern that involves all five stages of change and reinitiating change. The cycle is a change process progressing from precontemplation through maintenance followed by a “relapse” to precontemplation. The notion of relapse is qualified because a return to the initial stage includes knowledge acquired from the new information provided by the social worker. When advance planning discussions have occurred in the past with patients, or as these discussions become more common in the general population, patients may find increased emotional and social comfort in examining alternatives. The hope is that when clients are next asked to review a health care decision based on new information, whether due to increased health risk or decreased benefit of procedure, the previously practiced process of moving between the stages of change to explore alternatives will become more familiar. With familiarity, individuals may experience increasing ease with engagement in end-of-life discussions and care planning overall. Therefore, the new information being explored may make successful change more likely.