Advance care planning in COPD

ACP principles and theory

The ethics mandate of informed consent has been the first among the foundational principles of traditional ACP. An updated view recasts this concept as informed choice. Derived from the bioethics principle of respect for autonomy informed choice also connects to principles of beneficence, non-maleficence, and justice. ¹⁶ Respect for autonomy, the basis of informed choice, is slowly taking on a much more relational sense, which is expressed in the recent focus on patient- and family-centred care. ^{17 –19} Patient-/family-centred care has been defined as “a partnership among patients, families, and health care providers to design patient-specific education and support to assist in making decisions that are respectful of the patient’s needs and wishes.” ²⁰ This partnership is built through attention to: (a) disease/illness experience (patient/family perspective of the disease process), (b) whole person (more than physical), (c) common ground (reducing mismatched goals, consensus on decision-making, and what information is needed/wanted), and (d) therapeutic relationship/trust. ²¹ Patient-/family-centred care is also well represented in codes of professional ethics. For example, the Canadian Medical Association code of ethics includes the following three clauses that are consistent with the goals of comprehensive, relational ACP:

First consider the well-being of the patient; 3. Provide for appropriate care for your patient even when cure is no longer possible, including physical comfort and spiritual and psychosocial support; 27. Ascertain wherever possible and recognize your patient’s wishes about the initiation, continuation or cessation of life-sustaining treatment. ²²

Another ethics consideration in ACP is “hope,” which pertains to an individual’s beliefs, values, goals, identity, vulnerability, and sense of agency. ²³ Attention to hope in the context of ACP discussion clearly connects to patient-centred care and requires attention to elements of negotiation, competence, and responsibility in terms of being respectful of participants’ beliefs, goals, and vulnerability. ²⁴ Such respectful attention can address physicians’ concerns about the potential for ACP to erode patients’ hope/hopes.

Researchers have also identified theory related to communication (uncertainty management/problematic integration) ²⁵ and health education and promotion (interactive decision-making model, representational approach to patient/family education, and stages of change) ^10,20,26 as pertinent to ACP design. Integration of these theoretical principles has led to the development of new, more comprehensive, meaningful, and effective approaches to ACP. Among the most clearly thought out, rigorously evaluated, and widely adopted model is Respecting Choices ^® designed, implemented, tested, and disseminated through Gundersen Lutheran Medical Foundation, Inc. in LaCrosse, Wisconsin. The Respecting Choices ^® model includes a “patient-centred advance care planning” interview based on a number of principles (Box 1).

Further evaluation of this model has led to expansion beyond a one hour session and a greater focus on readiness. ²⁸ Readiness is based on “stage of change” theory, which describes to five stages as integral to any health-related behaviour change: precontemplation, contemplation, preparation, action, and maintenance. ¹⁰ Viewing ACP as a process of behaviour change based on considering, discussing, and formalizing goals of care, makes “stage of change” theory relevant to ACP design. Moving a patient and/or family along the readiness continuum as conceived in this theory would be viewed as effective ACP. There is evidence that those who have actively contemplated ACP are more likely to talk with their family members and those who talk about these things are more likely to formalize their wishes by naming a delegate or completing a document. ²⁹ While encouraging patients to consider and formalize their wishes concerning care is one goal of effective ACP, another is preparing their delegates by increasing their role-related knowledge, understanding of the patient’s care values/preferences, and confidence to carry out this responsibility. ^6,26 Which goal is primary in any given ACP interaction is determined by individual patient needs, decision-making style, and readiness. The goal also determines which frame of reference will be relevant for assessing ACP effectiveness, an important factor in motivating change to improve current ACP practice.

Outcomes associated with effective ACP

When patients and families/carers participate in ACP, it is more likely that the patient’s care wishes will be known and acted upon. ¹⁵ Family members/delegates tend to experience less stress and depression when their decision-making responsibility is clearer, the patient tends to have a better quality of death, and satisfaction with care is greater. ¹⁵ This decreases the potential for ethical dilemmas and resultant distress for staff members as well. There also tend to be fewer requests for life-sustaining procedures and thus lower rates of ICU admission and lower costs associated with the final weeks of patient’s life. ^15,30

Despite these potential positive effects too often current practice takes the form of a crisis-oriented “do-not-resuscitate (DNR)” or “code status” talk. Although this may represent good clinical judgment regarding an appropriate shift in goals of care, too often there has been little communication to prepare the patient and family for this shift, its implications, and associated decisions. ³¹ The patient’s delegate may not be invited or available to participate in the crisis situation “code status” discussion, which may limit their ability to adequately represent the patient’s wishes. These talks may take the form of a clinician-dominated presentation of the facts in a way that is biased (often unconsciously) toward the decision the clinician believes to be the best. ³²

In emotionally charged situations, preferences may not be elicited as much as they are constructed—shaped by how information is presented . . . . (p.195) ³²

Clearly ACP as currently configured is in need of meaningful revision to enhance practice in chronic illness contexts such as COPD. The ultimate goal would be to improve end-of-life decision making, outcomes, and satisfaction with care by improving patient-/family-centredness and addressing the barriers cited by physicians. To begin to explore this revision in advanced COPD, I designed and conducted a qualitative study guided by the question: What is required for meaningful, acceptable ACP in the context of advanced COPD? Specifically my goal was to explore: (a) whether ACP done using a patient-centred relational approach would be acceptable to patients/families living with advanced COPD and (b) whether ACP done this way would affect their hope/hopes.

Findings

Participants’ feedback on their experience of the study sessions was the analytic focus. None expressed a negative comment about the experience—six were clearly appreciative and two were neutral. Thus, feedback was generally positive despite initial hesitancy or dubiousness about the sessions by some early in the process. Four themes summarized participants’ appreciation: feeling heard/cared for, information, chance to consider values/preferences, and breaching imposed silence.

Feeling heard/cared for. Most participants appreciated having someone from the healthcare system come to their homes, listen and be attentive to their experiences, concerns, and feelings (Box 2). Some expressed a sense of relief connected to the sessions particularly when it enabled a shift in the current care plan—referral regarding an antidepressant for one participant who appeared to be struggling with clinical depression, and a change of living arrangement for another who was extremely isolated, fearful, and no longer coping in independent living.

Information. Most were interested in hearing more about COPD—symptoms, complications, progression, and/or treatments (Box 3). Their interest extended to end of life considerations including medical, ethical, and legal aspects—what was possible, what they might need to consider, what the default is if they do not indicate their wishes, have no one to speak for them, and are unable to speak for themselves.

Chance to consider values/preferences. Some appreciated sensitive encouragement to explore values and preferences related to end-of-life care, a topic they had had little, if any, experience with previously (Box 4).

In one case the carer was grateful because even though they had been discussing the patient’s preferences, the study sessions further clarified her wishes so that the family understood these much better along with the reasons behind them (Box 5).

Breaching imposed silence. Three carers were relieved to finally hear the patient’s thoughts/preferences in regard to end-of-life care and decision making as they had been unable to get this conversation started (Box 6).

Thematic network

Analysis of the sessions revealed three organizing themes—partnering, negotiating ambiguity, being a resource. The partnering theme was based on a cluster of three “basic” themes: (a) creating relational space, (b) building therapeutic relationship, and (c) discerning participants’ perspectives, each of which had a number of subthemes associated with it. Creating relational space involved relational communication techniques such as active listening, presence, accurate empathy, and unconditional positive regard. Establishing rapport and trust through genuineness, honesty, and reliability were the basis of building therapeutic relationship. Discerning participants’ perspectives arose from encouraging participants’ illness-related stories and exploring their meaning. Establishing relational space and trust through partnering was viewed as the foundational step for the other two.

Negotiating ambiguity, the second organizing theme, involved four basic themes: (a) exploring hope and fear, (b) acknowledging uncertainty, (c) engaging hope, and (d) addressing suffering. Participants’ hopes and fears were explored through direct questions and by listening for the undercurrents in the stories of their own and loved ones’ experiences of illness and mortality. Exploring these hopes and fears provided a natural segue into acknowledging uncertainty so much a part of fears, hopes, and the illness itself. Engaging hope involved framing ACP in terms of individually important fears/hopes to make it more relevant and accessible. Addressing suffering was achieved through being attentive to feelings and responding empathetically to any emotional/spiritual distress.

The third organizing theme, being a resource, involved a cluster of three basic themes: (a) providing education, (b) being an advocate, and (c) functioning as liaison. Providing education was about responding to questions, concerns, confusion, and/or misconceptions raised by participants during the sessions. Education/information needed to take into account participants’ adult learner status, varying literacy levels and learning styles/needs, and their health-/illness-related beliefs. Topics addressed included COPD progression and treatment options, potential scenarios at end of life, intervention options (possibilities, risks, and benefits), and ethical and legal aspects of decision making related to end-of-life care. Being an advocate referred to passing along participants’ desire for tangible help to appropriate clinicians in the broader health care system. Functioning as liaison meant facilitating information exchange between patient, carer and their health care team with respect to their goals of care related to ACP. Thus “being a resource” broadened the scope of the ACP partnership beyond just the facilitator/patient/carer triangle.

The overarching global theme“ACP as collaborative practice” brought the basic and organizing themes together as a coherent meaning network that captured the essence of the sessions. This global theme highlights the nature of ACP as a primarily collaborative process concerned with caring broadly understood. The implications in this overarching theme are significant in terms of revising clinical practice related to more meaningful, effective ACP.

Current care orientation

I operationalized patient-centred and relational ethics care principles through partnering, negotiating ambiguity, and being a resource for participants. Focusing on participants’ lived experiences of illness, identifying their perspectives, exploring their fears and hopes, addressing their uncertainty and suffering, and engaging their hope, were ways to weave “care” throughout the interaction. Indeed, the approach reclaimed “care” in ACP by treating it as an end in itself (an element of the care plan) rather than solely as a means to an end (advance directives). Being committed to discovering participants’ current concerns and discussing ways to address these was key to gaining their trust, building a therapeutic relationship, and creating an individually meaningful framework in which to ground the discussion of setting goals of care that would extend to end of life. Several authors mention this need to ground ACP in the regular care continuum. ^1,20,41,42 Black ⁴² also speaks about the need for ACP specific to the concerns and conditions commonly associated with particular illnesses. Finally, collaborating with other team members extends the relational communication approach, is part of being a resource, and is a necessary step in ACP if discussion outcomes are to bring about care more concordant with patients’ wishes.

Hope focus

Uncertainty, a source of anxiety/fear, is also a necessary condition for hope and a major factor in chronic illness, COPD particularly. Not only is it difficult to ignore this reality, to do so is insensitive and disrespectful of a patient’s right to informed choice. Working with uncertainty, anxiety/fear, and the hope that resides within and on the other side of them can enhance the relevance of the discussion for patients/carers as well as the trust needed for a strong therapeutic relationship. Fear and hope are sources of vulnerability as well and thus require attention in the form of accurate empathy, supportive response including appropriate referrals and collaboration with the wider team. Simply assuming we understand a patient’s hope/hopes is not appropriate and usually not helpful, whereas asking about and listening for it can provide valuable insights to help guide the evolving discussion framework for ACP.

Reflective praxis

The study approach expands the repertoire of an ACP facilitator’s required skills to include expertise in applied self-awareness and reflection, a common focus in spiritual care and psychology-related fields. ^{43 –45} A “praxis” perspective connotes a “combination of reflection and action to effect transformation” (p.461). ⁴⁶ Within the context of spiritual care education, pursuit of a “praxis” orientation involves applying an action–reflection–action–reflection cycle in professional practice settings. Continual encouragement and supervision of reflection on the practitioner’s motivation behind her or his actions (self-awareness and internal process) and the effects of those actions on self and others increases capacity for and commitment to being a more thoughtful, sensitive practitioner. Partnering, negotiating ambiguity, and being a resource are strengthened by the ability to monitor, interpret, and utilize transference, countertransference, and projection identification dynamics to monitor participant needs in the service of more sensitive, relevant ACP. Emotions, pre-understandings, and assumptions motivate choices to move evolving discussions (and the therapeutic relationship) in certain directions and not others. ⁴⁷ It is therefore important for clinicians to monitor countertransference by being aware of their emotional reactions to individual patients and situations, as sources of helpful insight into these individuals’ thoughts and concerns. ⁴⁸ Such insight provides additional clues for accurate empathy to strengthen the partnering dynamic.

Contextual sensitivity

Advanced COPD is uniquely characterized by vulnerability due to invisibility, social isolation, guilt/regret/stigma, and negative social determinants of health. Engaging participants in ACP discussions in their homes in a way that was attentive to their current distress and care concerns countered their isolation, sense of stigma, and invisibility. It introduced ACP within a framework of care that focused on their comfort, including attention to the effects of negative social determinants. All were contending with poverty, low levels of formal education, and significant comorbidity and a long history of smoking, factors that can and do affect how/whether patients’ and families’ communicate with clinicians. ^49,50 They may be reluctant to ask questions or seek clarification from clinicians if they do not understand health-related information or its implications. They may be reluctant to seek information in the first place, assuming instead that clinicians will tell them whatever is important for them to know. ⁵¹ Many have experienced the health care system as abandoning, judgmental, and unhelpful especially with respect to identifying and accessing needed resources. ^52,53 The “collaborative care” approach attempted to counter this negative experience.

In addition, ACP print resources tend to have reading levels that are too high and further complicated by legal and medical jargon. ⁵⁴ “The combination of limited literacy and poor advance directive design results in a mismatch that may jeopardize decision-making around end-of-life care.” ⁵⁵ Improved understanding may ultimately depend more on better and more frequent one-on-one communication (between patients and intimate others and between patients, intimate others, and clinicians) than on print resources. ²⁶ More meaningful and effective end-of-life decision making tends to result when such conversations occur between patients and their loved ones. ^{6,15,26,28,56}

Developing a cohesive process from all these elements requires adequate attention to fostering collaboration on a number of with patient and family/carer, with individual health care providers, the team, and at a system level. Respecting Choices ^® stresses the importance of systemic collaboration with any ACP program so that the necessary environment is in place to support, implement, and follow-up on decisions arrived at during these discussions. There is little point in engaging in ACP discussion if the patient’s preferences are never communicated to those who will ultimately provide the care. Similarly, there is no point in documenting these preferences if there is no mechanism to ensure the document will be available where and when it is needed. As well, collaboration may increase the potential for ACP to be ongoing and thus enhance the integrity of informed choice. These potential ACP-related outcomes have significant implications for clinical practice.

Clinical implications

First, with respect to physician concerns about their lack of time and appropriate communication training, revised models suggest that professional designation matters less than facilitator competence in the relevant areas including relational communication informed by reflective praxis, psychosocial/spiritual sensitivity, illness-related, and end-of-life care knowledge. The ACP facilitator can be a nonphysician but must be committed to ongoing collaboration with other members of the team including the patient’s physicians. Second, the paradigm shift fits well with a movement toward more community-based care within a broader framework of chronic disease management. ^57,58 ACP can be done within the context of ongoing home care and self-management support, nonurgently, in surroundings that are more private, comfortable, and familiar for the patient and family. Ongoing conversations and attention to clues in the physical surroundings help the ACP facilitator get to know both the patient and her or his substitute decision maker. This can enhance the understanding of current as well as future goals of care and associated concerns. It would also establish ACP as an ongoing process to accommodate potential changes in goals of care that can arise as the illness progresses.

Third, revised models have important professional ethics implications. With respect to informed choice, they may increase the potential for care to be more concordant with a patient’s preferences related to end-of-life decision making and/or interventions. More satisfactory care may result in fewer ethical dilemmas and thus less moral distress for patients’ proxies, families, and clinicians. Finally, an increased likelihood of more appropriate resource allocation has been documented where there has been high-quality timely ACP. ³⁰ It appears that more in-depth ACP can enrich patient/carer understanding of the illness trajectory, position within that trajectory, the nature of risks and benefits related to end-of-life care treatment options, and their values/preferences concerning such care and decision-making. When this sort of ACP takes place it seems that patients and families tend to curtail life-sustaining interventions to a greater degree.. Thus, it seems that timely, competent ACP, by eliciting and updating goals of care, may result in reduced costs at the end of life as well as enhanced satisfaction with care leading up to and through the final stage.

Given these potentially positive, significant clinical implications it seems past time to revise ACP and models of care more generally, particularly in the case of chronic illness. Prognostic uncertainty, patients’ and families’ natural aging view of declining quality of life in advancing COPD, ¹² and increasing institutional pressures (time, personnel, and venue) mitigate against continuing the current approach to ACP and argue for new, more theoretically sound models.