2: Key principles and practices of person-centered care planning

Module 2: Key principles and practices of person-centered care planning

Goal

This module introduces the fundamental values of person-centered care planning (PCCP) and describes how each translates into practice. Of particular importance is the development of an engaged and trusting relationship within which the practitioner can explore different ways of co-creating plans in partnership with persons in recovery.

Learning Objectives

After completing this module, you will be better able to:

discuss the values and principles of person-centered care planning;
appreciate the importance of engaging persons in recovery in trusting and collaborative partnerships as the necessary foundation for recovery planning;
identify the key practices of person-centered care planning across multiple domains.

Learning Assessment

A learning assessment is included at the end of this module. If you are already familiar with the subject of person-centered care planning, go test your knowledge. Then you can focus your learning efforts on the material that is new for you.

A Caveat ¹

A cautionary note is necessary prior to presenting details regarding the principles and practices of person-centered care planning (PCCP). PCCP cannot be carried out as though it were some straightforward or simple thing like inserting “Tab A” into “Slot B.” The emphasis on the “nuts and bolts” in this module, and those that follow, should by no means be taken to suggest such an approach. In fact, such a rigid adherence to a single model or a set of standards would be antithetical to the core premises of PCCP.

Nonetheless, there are several strategies that illustrate what PCCP is and what it is not. These are articulated to offer guidance (not directives) for well-intended practitioners who ask the question—as they so often do—“What can we do differently today when we sit down with Tisha to assure that her plan is truly person-centered?”

This being said, it is important to recognize that each organization, each local community, and each country is different—with a range of clinical traditions and standards, regulations, funding strategies, and so on. The intent of this module is NOT to endorse one standardized model or way of doing things. Rather, reflective practices are reviewed in an effort, in the words of O’Brien [2], to “encourage the flowering of diverse methods … that express the many different gifts of those people who accept responsibility for the work,” and responsibility to walk beside and support people on their unique paths to recovery and wellness. Practitioners are encouraged to incorporate the strategies, tools, and suggestions offered in the remainder of this text in the manner that best suits the abilities, needs, and preferences of the people they serve.

Key Principles and Practices of PCCP

The question of planning ownership—or “who owns the plan?”—in person-centered planning is undeniably central. Yet, as we consider this key question, it may be more enlightening to ask ourselves instead, “who owns the person’s life?”

—Jonikas and colleagues [3]

The following section elaborates on the core principles of PCCP as introduced in Module 1. Each of the principles is grounded in an appreciation that PCCP is, at its core, about respecting an individual’s human rights to participate fully in community life in a self-determined way. Key practices within PCCP are also identified to highlight how these more abstract concepts can be translated into real and meaningful changes in mental health service settings. Though some practices certainly cut across various principles, for clarity we have included each practice a single time only in the discussion of the most relevant principle.

Self-determination and community inclusion are fundamental human rights for all people.

No right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his[/her] own person, free from all restraint or interference of others, unless by clear and unquestioned authority of law.

—US Supreme Court, Union Pacific Railway Co. v. Botsford [4]

The quotes here and below highlight the fact that PCCP is based fundamentally on a civil rights model of psychiatric disability. This model views self-determination and participation in community life as basic human rights of people with mental illnesses rather than as privileges that have to be earned either through compliance with care or through the acquisition of a variety of social, cognitive, or behavioral skills.

Recovery and PCCP are built on the principle that people with mental illness do not have to successfully “complete treatment” or be cured of their illness in order to participate fully in community life. This approach has profound implications for the structure of mental health care across the globe, because achievements such as meaningful jobs, intimate relationships, and a home to call one’s own are not things that come after a person has recovered. Rather, they are at the heart of the person-centered recovery process all along! In PCCP, we recognize that the person owns his or her life, and, as a result, should drive the planning process to the maximum extent possible. This assumption is not nullified by labels, noncompliance, or perceived “stage” of recovery.

Ownership of one’s life isn’t a tangible thing that comes with a guarantee or warranty. It is a physical, mental, spiritual, and responsible connection/reconnection to life for an individual who seeks his/her own destiny.

—Nancy Fudge, as quoted in Jonikas and colleagues [3]

Believing that treating symptoms is the first order of business (while delaying attention to broad-based life goals) can lead systems to establish a continuum of services that individuals are directed to progress through in a linear fashion. For example, it is common for referrals to vocational rehabilitation programs to be controlled by a clinical practitioner. In addition, people are often required to demonstrate “work readiness” or “symptomatic stability” as a prerequisite to entry into such programs. This means that the practitioner will sign off on the referral only when the person has “proven” that he or she is ready for employment through compliance with treatment and the demonstration of clinical stability.

However, abundant literature has shown that these types of screening procedures and criteria have limited predictive validity regarding success in the workplace. Requiring people to move through services in this manner also neglects the fact that activities such as working are often the path through which people become clinically stable in the first place. PCCP respects the nonlinear nature of recovery and service participation, and encourages individuals in choosing from a flexible array of supports as needed.

What does this look like in practice?

Individuals are not required to attain, or maintain, clinical stability or abstinence before being supported by the care planning team in pursuing such goals as employment, education, or housing.
People are encouraged to pursue their recovery in whatever “order” or nonlinear fashion they choose, with the least number of “hoops” to jump through, for example, people have direct access to recovery services (such as supported employment, supported education) rather than being subject to “gate-keeping” where the referral is controlled solely by a clinical practitioner. A preestablished continuum of services is replaced with a flexible array of supports that individuals can choose from based on their unique needs and preferences and how these might shift over time.

Active participation and empowerment is vital

Self-determination requires that individuals have the right to control the direction of their lives and their treatment free from undue external influence. This includes the right to exercise control in the planning of services and supports. In PCCP, there is an emphasis on personal empowerment and maximizing one’s ability to make life-defining decisions involving one’s living situation, relationships, vocation, education, and other areas of life.

All participants in the care planning process must understand, and respect, that the recovery journey belongs to the person receiving care. Practitioners may provide the person metaphorically with a car, but it is the person who must then take over and occupy the driver’s seat. As with driving, the person will need to be educated about various options and their potential consequences, but he or she will be the one to drive the car, and, to extend the metaphor, to drive his or her own recovery plan. Active participation and empowerment of the person receiving services is vital. Participation that is limited to passive compliance is seen as potentially damaging in that it reinforces a sense of hopelessness and interferes with the activation, learning, and growth necessary for people to advance in their recovery.

Particular attention must be paid, however, to the fact that this emphasis on self-determination and autonomy in PCCP may appear to conflict with some individuals’ cultural values. For example, family-centered and collective processes may be more central to goal setting and decision making in some African, Hispanic, Asian, and Native American cultures. If the individual expresses such a cultural preference or value, practitioners should manage the planning process in a way that legitimizes a more collective decision-making approach [5]. For example, when a person expresses a cultural preference to defer to a parent or a community elder in the decision-making process, the practitioner can encourage that person’s participation and support him or her in taking an important and active role throughout the process. This may be achieved by the parent or elder exercising leadership directly in a planning meeting or perhaps by this person offering his or her input in a less directive fashion.

Either way, it is important to recognize that such adaptations in the decision-making process are actually consistent, rather than contradictory, with the principles of person-centered care, as it is the person himself or herself who is asked and can express his or her preferences for how decision making is to be carried out. While the process may seem to be the same on the surface, there is a world of difference between someone making decisions for an individual without their consent versus someone making decisions because the individual has, in fact, invited them to do so for whatever reasons.

Finally, it is essential that practitioners develop competency in the emerging best practice of shared decision making (SDM) if they are to support maximum self-determination in the PCCP process. SDM is relatively new in the mental health arena, and, as yet, there is no one consensus-definition of the term. However, in the widely referenced SAMHSA report Shared Decision Making: Making Recovery Real in Mental Health [6], SDM has been described as a way for service users and practitioners to improve communication about treatment options to arrive at more collaborative decisions that respect individuals’ preferences, goals, and cultural values. In this sense, when used effectively, shared decision making is one tool practitioners can use to help put the person back at the center of person-centered care.

Shared decision-making is founded on the premise that two experts are in the consultation room…neither…should be silenced, and both must share information in order to arrive at the best treatment decisions possible.

—Deegan [7]

While the authors see SDM as an important development that supports transformation and the adoption of PCCP, SDM, in and of itself, is not sufficient for a number of reasons to realize the vision of PCCP presented in this text. First, as is the case with many emerging recovery-based approaches, the concrete practices of SDM have yet to be fully articulated in a manner that will support accountability in the field. Its hallmark decision aids, while promising, are limited in scope most often (applying specifically to treatment decisions) and are not yet widely available to service users or practitioners. As we have learned through years of our own PCCP consultation, in the face of ambiguity, it is not uncommon for practitioners to assert “we already do it.” As applied to SDM, at best, this runs the risk of watered-down implementation, and at worst, this can result in SDM becoming a “euphemism for persuasion or pressure to consent rather than fulfilling its promise as supported self-determination” [8].

The authors caution against this and remain hopeful that SDM will be delivered in the spirit it was originally intended as it holds great potential to facilitate respectful communication and service user empowerment. However, high-quality PCCP requires that SDM NOT be offered in isolation from the multiple other diverse key practices presented throughout this text, and also that it NOT be limited to the context of treatment decisions but also applied to the broader arena of life choices that PCCP aims to uphold.

What does this look like in practice?

An individual may select or change practitioners within agency guidelines and is aware of the procedures for doing so. If guidelines are overly restrictive, they should be revisited and potentially modified with inputs from the persons served.

The individual is a partner in all recovery and care planning activities or meetings, except under emergency and/or extreme circumstances (which are clearly documented in the person’s medical record).

The plan is based on the goals and priorities identified by the person receiving services and, when appropriate, in conjunction with those who the person wishes to involve in the PCCP process.

The person receiving services has reasonable control over the nature and logistics of the planning process, including invitees, the location of the care planning meeting, and the degree to which he or she wishes to make decisions autonomously or in deference to the respected others.

Individuals are given advance notice of all planning meetings so that they can adequately prepare to participate and/or arrange to have supportive others attend.

Practitioners develop competency in the emerging best practice of SDM. They routinely make use of the available SDM decision aids and supports, and encourage service users to do the same. For example, print workbooks, educational videos, online interactive decision aids, and other “cool tools,” which are available at the SAMHSA Shared Decision Making Website www.samhsa.gov/consumersurvivor/sdm/StartHere.html

Developing trusting, reciprocal, and collaborative relationships is key

One of the key ways in which recovery-oriented care has been distinguished from traditional approaches is that it attends first and foremost to the person with the mental health condition, rather than, say, to the symptoms of the illness or to the diagnosis. The importance of this shift from illness or diagnosis to person permeates first-person accounts, in which people consistently identify “having someone who believed in me” as one of the most important factors in their recovery. While treatments may be useful in addressing illness, having a foundation of support in trusting, accepting relationships in which the person feels valued as a human being appears to offer a necessary basis for the person to take up “the work of recovery” [9].

While such support obviously should, and often does, come from important people in the person’s life such as family and friends, first-person accounts suggest that mental health care is most effective when it involves this kind of relationship as well. This may, in part, be in reaction to the experiences of stigma and discrimination persons with mental illnesses have often encountered in mental health settings in the past, with one function of recovery-oriented care being to help the person repair the damage done by previous negative experiences. The need for mental health practitioners to engage in respectful, trusting, and collaborative relationships may also be in response to the nature of some of the damage done by the mental illnesses themselves. Above and beyond—or perhaps underneath—experiences of discrimination, the disruptions caused by the illness may further undermine a person’s sense of self, making the restoration of his or her “personhood” a major focus of care early in the recovery process.

Rather than subsuming the entirety of the person, a psychiatric label is but one aspect of a person who otherwise has assets, interests, aspirations, and the desire and ability to continue to be in control of his or her own life.

—Connecticut Department of Mental Health and Addiction Services, Practice Guidelines for Recovery-Oriented Behavioral Health Care [10]

In fact, in mental health care, attending in this way first and foremost to the person has been a well-accepted principle of the recovery movement from its very inception. It was highlighted as early as 1992 by Pat Deegan, for example, when she suggested that “the concept of recovery is rooted in the simple yet profound realization that people who have been diagnosed with a mental illness are human beings” [11]. William Anthony [12] likewise argued that the transcendent principle of recovery is the attention it draws to the fundamental “personhood” of people with mental illnesses.

In order to be aligned with these principles, recovery-oriented practices—practices that are aimed at helping to restore the person’s basic sense of personhood—can no longer perpetuate the neutral or abstinent stance advocated originally by Freud. Service users have described the dispassionate stance taken by many mental health practitioners as contributing to, rather than lessening, their sense of no longer being a person. One-directional relationships, in which one party does all the giving and the other party does all the taking, leaves the second party feeling diminished rather than enhanced [13]. Understanding these limitations of therapeutic abstinence has led recovery-oriented practitioners to adopt a more engaged—and still professional—stance in which a core part of their role is to validate the person’s fundamental personhood and assist the person in reconstructing a self, and a life, in the wake of the illness and the effects of prejudice. As a longtime mental health consumer advocate in the United States, Ed Knight, once remarked, in order to participate in PCCP, “you first have to believe that you have the right to be a person.”

Recovery-oriented practitioners convey this very important message to persons with mental illnesses by demonstrating a genuine sense of compassion and by remembering—as suggested by Deegan [14]—that, no matter what the diagnosis or the severity of the illness, the person remains a human being deserving care and love. Recovery-oriented practitioners communicate this message also by providing a safe space in which the person can feel welcomed, supported, and valued, and in which the person is invited to talk about the things that matter to him or her—whatever they may be—and in which the practitioner will take the time to listen. Perhaps most importantly, practitioners convey this message by showing common human concern for the person’s everyday life. It is this concern with helping to make the person’s everyday life better, despite the illness and its effects, which provides the necessary context and foundation for developing a recovery plan that has that as its primary focus.

What does this look like in practice?

Practitioners view persons receiving services first and foremost as human beings deserving care and compassion and capable of giving it in return. Agencies examine their policies closely regarding clinical “boundaries” and how these impact the therapeutic relationship, for example, are practitioners allowed to accept gifts or tokens of appreciation as gestures of reciprocity and a person’s desire to “give back?”
Practitioners view persons receiving services as experts on their own lives, asking them what has worked/not worked in their recovery process and reflecting this input in their care plan.
Practitioners hold and convey the hope that the person’s life can be improved. Ambitious goals are not discounted as “unrealistic” but appreciated as a reflection of the person’s persistence and resilience. Practitioners also share accurate, research-based information regarding the broad heterogeneity in outcomes for persons with mental illnesses rather than defaulting to assumptions of chronicity and lifelong service enrollment and dependence.
Practitioners take an active interest in the person’s everyday life, in a conversational rather than interrogational manner, and help to identify and explore ways that the person’s life can be improved in ways that are important to the person. This includes openness to conversations around a person’s intimate connections to other human beings and/or a spiritual higher power, that is, conversations about God and sex! Many clinical practitioners continue to be uncomfortable exploring this territory despite the fact that persons with mental illnesses often report that these relationships are at the core of their recovery.

Language matters and should reflect recovery values

Despite the fact that the process behind PCCP may be largely recovery-oriented, the translation of this process into the actual language of the document itself continues to be a core challenge to many practitioners who are committed to creating person-centered plans. The following are offered as overarching guidelines that should be considered regarding the language that is incorporated in both the written documents and the verbal interactions in practice.

What does this look like in practice?

Use person first and verbatim language. This avoids being either stigmatizing or objectifying. “Person first” language is used to acknowledge that the disability is not as important as the person’s individuality and humanity, for example, “a person with schizophrenia” versus “a schizophrenic” or a “person with an addiction” versus “an addict.” Employing person first language does not mean that a person’s disability is hidden or seen as irrelevant but that it is not to be the sole focus of any description about that person. To make it the sole focus is depersonalizing and derogatory, and is no longer considered an acceptable practice.

While the majority of people with disabilities prefer to be referred to in this manner, when in doubt, ask the individual what he or she prefers. Use of person-first language is intended to support a person’s positive sense of identity apart from his or her illness. It is not intended to be seen as a superordinate principle that applies universally to all individuals. Within the 12-Step Fellowship of Alcoholics Anonymous, for example, early steps in the recovery process involve admitting one’s powerlessness over a substance and acknowledging how one’s life has become unmanageable. It is therefore common for such individuals to introduce themselves as “My name is X and I am an alcoholic.” This kind of preference is respected as a part of the individual’s unique recovery, and it is understood that it would be contrary to person-centered principles to pressure the person to identify as “a person with alcoholism” in the name of person first language.
Efforts are made to record each individual’s responses verbatim, and to use that person’s words as much as possible, rather than translating the information into professional language. This helps to ensure that the plan remains narrative-based and person centered. If and when technical language must be used, it is first translated appropriately and presented in a person first, nonoffensive manner, for example, avoiding the language of “dysfunction” or “deficit.” It is to be expected, for example, that more clinical components of a recovery plan will need to address what professionals currently consider to be the symptoms of the mental health condition the person has. It is more accurate and useful—as well as respectful—however, to state that the person “will hear fewer distressing voices” or “hear distressing voices less often” than to identity “reduction of auditory hallucinations” or simply “decreased symptoms” as an objective on the person’s recovery plan.
Use language that reflects a resilience framework. Practitioners work to interpret perceived deficits, difficulties, and impairments within a strength and resilience framework, identifying the person receiving services less with the limitations of the disorder and more with his or her active attempts to manage the condition. For example, an individual who takes medication irregularly may currently be perceived primarily as “noncompliant,” “lacking insight,” or “requiring monitoring to take meds as prescribed.” These concepts are consistent with problem-centered plans. It is also possible, however, for this same individual to be perceived as “making use of alternative coping strategies such as exercise and relaxation to reduce reliance on medications” or could be praised for “working collaboratively to develop a contingency plan for when medications are to be used on an ‘as-needed’ basis.”

In a strengths and resilience framework, words such as “hope,” “coping,” and “recovery” are used frequently in the documentation and delivery of services. There are seldom, if ever, times when people are not doing anything at all on their own behalf. It has been our experience that, while it may sometimes require concerted efforts on the part of the practitioner to discern what efforts the person is making, people are much more often actively trying to find ways to deal with their life situation. When this is not easily seen in any given individual’s case, practitioners are encouraged to remember the following explanation offered by Pat Deegan, who herself had experienced such periods of apparent passivity and withdrawal:

The professionals called it apathy and lack of motivation. They blamed it on our illness. But they don’t understand that giving up is a highly motivated and goal-directed behavior. For us, giving up was a way of surviving. Giving up, refusing to hope, not trying, not caring; all of these were ways of trying to protect the last fragile traces of our spirit and our selfhood from undergoing another crushing [15].
Use descriptive language whenever possible. Avoid using diagnostic labels as “catch-all” means of describing an individual (e.g., “Is a 22-year-old borderline patient with…”), as such labels tend to be deficit-oriented and they often yield minimal information regarding the person’s actual experience or manifestation of illness. Alternatively, an individual’s needs are best captured by an accurate description of his or her strengths and limitations. For example, the term “low-functioning” is commonly found in records, yet this term offers little by way of informing a meaningful rehabilitation intervention. This is not to suggest that an individual’s struggles are discounted. However, it is far more useful to provide a description of exactly how a person’s symptoms interfere with completing the daily activities and pursuing valued recovery goals. While diagnostic terms may be required for other purposes (e.g., classifying the individual to receive reimbursement from funders), their use should be limited elsewhere in the PCCP document and replaced with a descriptive focus on how the symptoms impact the person’s life.
Use empowering language. The language used also can be empowering, avoiding the eliciting of pity or sympathy, as this can cast people with disabilities in a passive “victim” role and reinforce negative stereotypes. For example, just as we have learned to refer to “people who use wheelchairs” as opposed to “the wheelchair bound,” we should refer to “individuals who use medication as a recovery tool” as opposed to people who are “dependent on medication for clinical stability.”

There are many terms that have been used to refer to individuals who experience mental illness including person in recovery, person with a mental illness, person labeled with a psychiatric disorder, mental health consumer or service user, person with a psychiatric disability, and so on. With the exception of the adherence to “person first” language principles, there is little conceptual agreement regarding the preferred or most appropriate terminology. In many cases, it is appropriate to speak simply to the “person,” and to use terms such as individual, person in recovery, person seeking services, and so on, as we try to do in this text. However, alternative terms may be utilized depending on the context and the function of the communication. For example, “consumer” or “service user” may be used to reflect the language that has been incorporated in prominent government reports and is frequently endorsed by advocacy organizations, while a “person with a psychiatric disability” may be used to underscore the sociopolitical and civil rights dimensions of recovery-oriented care and person-centered planning.

All parties have full access to the same information

In a PCCP process, the person (and family as relevant) is provided with support and information before the planning meeting so that they can be prepared and participate as equals (e.g., [16]). Equal access to information, often referred to as transparency, is essential to level the playing field and to allow all parties involved to participate as valued members of the team and the planning process. Transparency also means that people can see their records at any time; since they are offered a copy of their recovery plan, they can write in their record to express alternative views or augment what has already been written. In addition, records should be readily available so that when new situations arise, wheels are not reinvented and the person and his/her team can learn from past experiences.

Automatically offering a written copy of the recovery plan to the service user and inviting his/her review and feedback is considered an essential practice in PCCP. For example, “We met last week with the Team to talk about your priorities over the next few months and I’ve taken a stab at drafting the recovery plan—along with the goals, objectives, and interventions we discussed in the meeting. I’d like to take a few minutes and go over this with you to make sure we got it right. And I’d also like you to keep a copy for your records because the plan is going to be an important tool that helps shape how we work together moving forward.” Offering a copy of the plan, and being open to feedback and revisions, is consistent with the notion of transparency in the relationship as the plan itself is an important manifestation of the partnership on which PCCP is based. In addition, this key practice—perhaps more so than many other strategies—can have a simple, yet powerful impact on your PCCP implementation. Knowing ahead of time that you will be placing a written copy of the plan in the individual’s hands and supporting him or her in reviewing it and offering a feedback often improves dramatically the quality of the written document as practitioners will find they are sensitized to the type of language they use in describing the person and his/her life while also working diligently to really honor the person’s preferences and priorities in the drafting of the plan content.

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