Module 8: PCCP implementation: Common concerns and person-centered responses
This concluding module attempts to tie up several loose ends that may remain from the previous modules. Though there are many factors facilitating the adoption of rigorous person-centered care planning (PCCP), there are also common misperceptions that hinder its implementation. This module is dedicated to a discussion of these frequently identified concerns that mental health practitioners and system leaders often express regarding the introduction of PCCP. In addition, alternative ways of thinking about, and responding to, around each of these areas are presented. Given the heightened sensitivity to safety issues in the current climate, it also focuses in depth on the issue of the perceived risks involved in a shift toward PCCP.
After completing this module, you will be better able to:
- identify and address the most common concerns that practitioners have had about adopting PCCP processes in their practice;
- have a realistic sense of the risks entailed in promoting service user autonomy within the context of PCCP and appreciate the need for appropriate risk assessment and management;
- understand the purpose and function of psychiatric advance directives and other self-care tools in minimizing risk in a way that preserves autonomy while promoting safety for all parties.
This section addresses 10 of the most common concerns that direct care staff, program managers, and agency administrators have raised in relation to the adoption of person-centered care planning (PCCP) in their organizations . These concerns are summarized in Table 8.1, and range from the practical (Will we be able to bill for a person-centered plan? How will we ever find the time to do PCCP?) to the more philosophical (Is it too “risky” to support people with serious mental illnesses in making their own decisions? How does this fit with my role as a clinical practitioner?). As mentioned earlier while introducing the broader notion of recovery-oriented practice (of which PCCP is one of several key components) , a primary concern identified by these stakeholders is that of potentially increasing risk, and decreasing safety, through the promotion of personal choice. This module spends additional time addressing this issue and offering recovery-oriented alternatives to current, coercive interventions.
Table 8.1 The Top 10 Practitioner/Administrator Concerns about Person-Centered Care Planning
|10||Emphasizing client choice inevitably devalues clinical knowledge and professional expertise.|
|9||While person-centered care planning may be useful, it is really the responsibility of nonclinical practitioners. It has little to do with treatment.|
|8||We do “recovery” already; our care is already person-centered.|
|7||The care plan is not really that important and is not actually used to drive care. It is just for accreditation and reimbursement purposes.|
|6||Person-centered care planning is supposed to be based on people’s own goals, but many people with serious mental illnesses give up on any goals. They are doing their best just to get through each day and may not want to make any changes. Who is to say that they have to be working toward “goals”?|
|5||Don’t the principles of person-centered care contradict the current emphasis on using evidence-based practices?|
|4||Person-centered care makes sense only when the person has accepted treatment and it has been effective. But most people with severe mental illnesses are too disabled to pursue recovery goals. The first step is getting their clinical issues under control. Later, they can make their own choices.|
|3||Person-centered care planning takes time and is labor intensive. With high caseloads, practitioners simply do not have the time it takes to do it.|
|2||Person-centered care planning is not consistent with the concept of “medical necessity” and therefore will not be reimbursed. It is also not consistent with the stipulations of regulatory and accrediting bodies.|
|1||Allowing people with serious mental illnesses to set their own goals and make their own decisions increases risk and exposes practitioners, and their agencies, to increased liability.|
Concern 10. Emphasizing service user choice inevitably devalues clinical knowledge and professional expertise.
This concern has been expressed through comments such as: “Why did I go to medical/nursing/social work/psychology/etc. school for all of these years if I’m just supposed to do whatever the person wants?” and “But he/she is mentally ill, his/her judgment is impaired, how could he/she know what’s best or what he/she needs? And if he/she does, what does he/she need me for?”
In response to these concerns, it is useful to point out that PCCP for persons with mental illness does not require practitioners simply to do whatever an individual wants, any more than patient-centered medicine does for persons with any other medical conditions. Practitioners are still obligated by the ethical principles of their professions to act both in accordance with their training, accrued expertise, and clinical judgment and in the best interest of the individual. What is different about PCCP (and patient-centered medicine) is that this care is offered within the context of a collaborative relationship in which the person being served is also recognized as bringing his or her own expertise to the table. This form of expertise, referred to as expertise by experience, pertains not to the technical knowledge that the practitioner has but rather to the person’s intimate knowledge of his or her own everyday life experiences, his or her needs, values, and preferences, and his or her own aspirations for a life worth living.
The people being served, and their loved ones, bring this knowledge and their concerns to the care planning discussions, while practitioners bring their expertise and skill to bear on assessing, evaluating, diagnosing, educating, informing, and advising the person and his or her loved ones and other allies about the various options they have for treatment, rehabilitation, and support. Decisions about these options are made collaboratively based on the relative benefits and risks/costs of each, on the person’s (and family’s) personal and cultural values and preferences, and with respect to which options will be most effective in enabling the person to pursue the kind of life he or she will find worth living. On the basis of this plan, practitioners deliver whatever treatment or rehabilitative interventions, or provide whatever supports, they are competent to provide following the nature of the person’s conditions, on the practitioner’s own training and expertise, and with the informed consent of the person and, if needed, his or her guardian or conservator.
In this sense, it is no more appropriate for the person to assume the role of the practitioner than it is for the practitioner to assume the role of the person, usurping that individual’s authority to decide for himself or herself what treatments, interventions, or supports he or she finds will be acceptable. Service users and family members cannot simply tell practitioners what to do, but neither can practitioners simply tell service users or family members what to do and expect them to do it. Under most circumstances (we deal with the exceptions under Concern 1), they have the right to make their own informed decisions. Appreciating this fact, practitioners recognize the need to devote time and attention to educating and informing individuals and families about available and appropriate services and supports and their relative benefits and costs, and providing advice and guidance when requested. And rather than abandoning people or families to what practitioners consider their “poor judgment” when they choose not to take such guidance, practitioners become adept at using persuasion and motivational interventions to encourage them to make better choices over time.
Concern 9. While person-centered care planning may be useful, it is really the responsibility of nonclinical practitioners. It has little to do with treatment.
Representative comments voicing this concern include: “I don’t have time to discuss life goals or interests, I barely have the time to conduct a thorough psychiatric evaluation. I leave those to the other staff. My role is to focus on the management of symptoms, that is what I was trained to do,” and “Consumers can pursue their interests and get help with their personal goals at the clubhouse/rehab center/housing or voc program. What I provide is clinical care, and it is not within my role to deal with those issues.”
As these comments suggest, this concern has multiple components. It is true that no one mental health practitioner will have the requisite expertise to attend to every area of a person’s life, ranging from prescribing the right medication to helping the person to find a home and choose an occupation. But PCCP does not require a single practitioner to do everything on the care plan for persons with serious mental illnesses. It is more common for the plan to involve several different practitioners with different, complementary, areas of expertise. Physicians and advanced practice nurses know how to assess and diagnose conditions and treat illnesses (among other things), whereas social workers and rehabilitation staff may have been trained to assess, map, develop, and assist people in accessing community resources (among other things). Psychologists may have expertise in cognitive-behavioral psychotherapy, peer staff in establishing trust and role modeling self-care, and still others in legal advocacy or physical health, with plenty of room for overlapping areas of interest. An individual’s care should not be driven so much by what expertise happens to be available, however—though that is an important consideration—but by what the person needs and can benefit from given their current priorities and most valued recovery goals.
The PCCP plan provides the overarching framework in which those discussions are held and decisions are made about what this person needs and can benefit from at this point in time. Different needs and aspirations may be addressed by different people—including the person himself or herself and his or her natural supporters—but everyone involved in a person’s care needs to know what role he or she is to play within the broader context of the person’s life and how his or her role will interact with, influence, and be influenced by, the roles of others. I may view my role as primarily that of assessing symptoms and prescribing effective medications, but if I do not know that my client is at the same time trying to go back to school or to get a job, I will be missing out on important information that would influence decisions about dosage, administration schedules, and side effect profiles. Administering a sedating medication at night may work well for someone who is having difficulty sleeping, but may not work well for someone who has to get up on time to make it to an early class. Furthermore, a medication that is framed as useful in the person’s efforts to succeed at school (e.g., if we turn down the volume of the voices, you will be able to concentrate better on what the instructor is saying) is much more likely to be taken as prescribed than a medication that poses additional obstacles to what the person is trying to achieve (e.g., the tremors I get from this pill make it hard for me to count out change from the register).
PCCPs help to ensure that we are not wasting our time trying to get people to accept treatments or other interventions they do not want and that all of the interventions and supports we do provide are integrated within the overall context of the person’s everyday life. So while a physician may not be the one to help a person find a home, it is important that he or she knows that the person is currently homeless, as this will influence other decisions about the person’s care. Similarly, while a job coach will not be the one to prescribe medications, he or she will need to be attentive to both the effects and side effects of the medications being prescribed, as these may impact on the person’s ability to get to work on time and to perform the tasks of the job. For a person to benefit from the collective expertise of the different practitioners involved in his or her care, it is important for all of those practitioners to be “on the same page.” In this case, the “page” is the PCCP that stipulates the respective roles of each of the practitioners involved, along with action steps for the person and for his or her natural supporters.
Refer back to the example of Mr. Gonzalez presented in Module 1. Mr. Gonzalez is a man living with bipolar disorder who wishes to be the best father he can be to his children, but whose symptoms of mania have led him to behave in a manner that has frightened his children and alienated his wife. A traditional treatment plan might focus exclusively on clinical issues to be addressed by a psychiatrist (e.g., compliance with medications and reduction of mania) with little, or no, mention of the man’s ultimate goal of reunification with his family, which might be viewed as a task for a social worker (and listed separately on a social work plan). We suggest that this lack of connection between treatment and personally valued life goals is one reason why attrition and dropout rates are so high in outpatient mental health care [3–5]. For practitioners to offer more responsive and individualized care, the care planning process needs to be driven by the person’s life goals rather than by the practitioner’s specific training or professional discipline. In person-centered care, we no longer have a clinical goal that exists independent of a meaningful outcome in a person’s life. The goal on the care plan—whether one is a psychiatrist or a social worker—is the same; for example, Mr. Gonzalez wants to reconnect with his family and be a good father. Each practitioner then assists Mr. Gonzalez based on his or her respective role and skills, with the social worker offering family counseling and the psychiatrist prescribing medications that can stabilize his mood and educating Mr. Gonzalez about ways to monitor his own early warning signs to prevent future episodes of behavioral dyscontrol. While such a difference may seem trivial to the psychiatrist, it may make all the difference in Mr. Gonzalez’s motivations for taking the medication that is prescribed (e.g., to reconnect with his family and be a good father as opposed to treating his bipolar disorder).
In summary, assertions by clinical practitioners that “those things (i.e., the pursuit of meaningful jobs, relationships, leisure interests) are important but they are really the focus of the clubhouse or the peer services team” serve to perpetuate a fragmented model of care where the obligation to deliver recovery-promoting services is deemed to be the sole responsibility of a specialized program or distinct group of individuals. While certain programs (e.g., peer-operated or rehabilitation programs) may be uniquely positioned to be leaders in recovery-oriented change efforts, these ideas must reshape how business is done in ALL parts of a system in order for meaningful transformation to occur. Recovery-oriented, person-centered care is not an “add-on” to be passed off to any one discipline or program. Rather, it implies profound changes across all staff roles, from clinicians through administrative assistants and psychiatrists to the CFO!
Concern 8. We do “recovery” already; our care is already person-centered.
Some practitioners take offense at the notion that the care they offer is not already recovery-oriented and person-centered. They object to the insinuation that they do not “take the person into account,” are not respectful of their service users, or do not tailor their interventions to each individual. If there are limitations placed on the degree to which their practice can be so, it is not their “fault,” but is rather due to the seemingly arbitrary and artificial constraints placed on them by the agencies and systems in which they work. There is simply not enough time to get to know the person: the paperwork requirements supersede their desire to be genuinely helpful, and/or the funders of services limit what practitioners can do and for how long.
We agree that caring and compassionate practitioners do already make concerted efforts to “take the person into account” and that many organizational and systemic barriers to person-centered care exist that will need to be changed dramatically in order to improve the quality of care practitioners can provide. These recognitions do not lead necessarily to resignation or to the conclusion that practice cannot be made more person-centered within current constraints, however. You most likely would not be reading this manual if you thought no steps could be taken to make your practice both more person-centered and more effective and gratifying. So in addition to listening empathically to the person and tailoring the care one provides to each individual, we suggest that PCCP involves the use of new tools and strategies that practitioners may have some familiarity with, but which generally are not employed routinely in practice. These include comprehensive and structured interests and strengths assessments; the inclusion of the person’s natural supporters and legal advocates in the care planning process; articulation of clearly defined short- and long-term personal goals with measurable objectives; assignment of responsibility for different tasks and action steps to different members of the care team, including the person in recovery; prioritization of natural, integrated settings over those designed solely for persons labeled with serious mental illnesses; and the use of tools such as psychiatric advanced directives, shared decision-making aids, and supported employment, housing, education, socialization, and parenting.
Thus, while many practitioners strive to attend to each person as a unique individual, there are many strategies and tools (some new, some longstanding) that are underutilized and whose consistent use in routine practice could significantly advance the implementation of a more person-centered model of care planning. Several concrete and specific indicators of PCCP are spelled out in detail in the Person-Centered Care Questionnaire (PCCQ) included at the end of Module 7. Practitioners are encouraged to complete the PCCQ in order to assess the degree to which their current practice already adheres to the principles outlined in this manual and to identify those areas in which they might take new risks to enhance their services.
Concern 7. The care plan is not really that important and is not actually used to drive care. It is just for accreditation and reimbursement purposes.
Practitioners may object to such attention being paid, and such importance being given, to what they view as largely a bureaucratic requirement, saying things such as: “Why are you focusing on a piece of paper that has little to nothing to do with the care I provide to my clients? It is for the chart, not for the person. Does it really matter?”
In practice, treatment plans have often been and are technical documents that have to be completed to satisfy accrediting (what is referred to in some settings as commissioning) or reimbursement bodies and typically have not been and are not useful either to the practitioner or to the person using the services. In such cases, the plan is completed and filed in the medical record and plays little, if any, role in actually guiding care. We do not believe that anyone would argue that this is an ideal way of providing services or occupying the time and talents of dedicated practitioners. While we recognize this is still the unfortunate reality of most treatment plans written in today’s systems of care, we propose that the truly person-centered plan—one created through a process of partnership, shared discovery, and thoughtful action planning—has the potential to be a powerful transformative tool. Rather than being a bureaucratic document that takes time away from the real work of direct care, the co-creation of the PCCP is best thought of as a central intervention in and of itself, as it becomes the very heart of the work and the therapeutic and healing process.
PCCP emphasizes the need for the individual to enter into a collaborative process with practitioners and natural supports to explore and identify the goals and objectives that will promote the person’s recovery and improve his or her quality of life. The resulting care plan is a roadmap for pursuing valued life goals and the milestones that are achieved along the way (i.e., short-term objectives) serve to give both the individual and his or her practitioners and loved ones the critical experiences of success and forward momentum needed to overcome the inevitable frustrations and setbacks that are encountered along the road ahead. In this sense, the plan becomes a useful tool that has direct relevance in guiding the work of the person and his or her team over time. It can be consulted as needed in order to ensure that all parties stay on course and revised as often as needed if the person reaches certain landmarks or has to bypass or work around roadblocks met along the way or if the person chooses to select a new destination.
Concern 6. Person-centered care planning is supposed to be based on people’s own goals, but many people with serious mental illnesses give up on any goals. They are doing their best just to get through each day and may not want to make any changes. Who is to say that they have to be working toward “goals?”
Change is admittedly hard for everyone, and caring practitioners who work with individuals who are seriously disabled by mental illnesses and the discrimination that has resulted from it are right to ask: “But what if my clients don’t have goals?” or to remark that: “When I ask my clients what their goals are they just give me a blank stare. They seem comfortable where they are, who am I to tell them that they have to change?”
Here it is important to acknowledge that most people do not live their lives explicitly in terms of “goals.” We are using this concept as a term of art to convey important ideas to practitioners, but are reluctant to use this term explicitly with persons in recovery or their loved ones, especially without being clear about what we mean. We all have dreams and aspirations, we all find enjoyment, pleasure, and meaning in some activities and pursuits more than others, but seldom do most of us take the time to break these down into the various steps that will be required for us to engage in them. Similarly, while many people with serious mental illnesses will not have explicit goals and may well not know how to answer questions that ask them about goals, they nonetheless will have some ideas about what could make their lives better. But before they share these ideas with anyone, they will have to feel some sense of trust and confidence that this information will be used in their best interest, to help them, rather than for other, less benevolent purposes.
For many persons who have been receiving psychiatric care for a while, for instance, the seemingly simple question of “What do you think would make your life better?” might strike them as odd and unexpected. They might even give voice to this reaction by saying: “Why would you care about my life all of a sudden? I thought you only cared about my symptoms.” Rather than viewing this as a sign of being paranoid, or as a response that reflects the person’s lack of goals, we should consider the context in which this question is being asked. Other barriers to goal identification might be the negative symptoms associated with schizophrenia and/or the demoralization that accompanies living with a serious mental illness and being subjected to the societal stigma and discrimination associated with it. In the wake of such devastation, it is understandable how it might be difficult for some people to identify and share their personal aspirations and interests, and why they might be reluctant to dare to hope for a better life. In such cases, it may require patience and persistence on the part of both practitioners and the person’s loved ones in encouraging him or her to imagine what might make his or her life better than it currently is. With so many of his or her previous dreams having been interrupted by illness and/or dashed by the legacy of the low expectations we have had for persons with serious mental illnesses, it may at first feel dangerous or scary to allow themselves to dream once again.
When facing such circumstances, practitioners need to conceptualize one of their first steps as assisting the person to get back in touch with his or her previous interests and talents and to draw on these to imagine a brighter tomorrow. What interested them when they were younger, what activities did they use to enjoy, what gave them a sense of pride or mastery? Had they been too distant from, or uninterested in looking back at, life before the illness, how would they like to be spending their time now on a day-to-day basis? Do they, for example, want to work and make money? Or, would they perhaps like to have a better place to live, or one closer to activities they might enjoy participating in? What gives them pleasure or a sense of success? This type of dialogue differs significantly from the more restrictive conversation in which the person has been expected merely to report on symptoms and side effects or patterns of eating, sleeping, and taking medications. Using strength-based inquiry to inspire hope and to support people in goal setting is a process that requires both clinical skill and perhaps a willingness to step outside the comfort zone of our inherited professional discourse.
Concern 5. Don’t the principles of person-centered care contradict the current emphasis on using evidence-based practices?
Given that advances in PCCP are relatively recent and may be new to many practitioners, it is fairly common for some practitioners to wonder about the “evidence base” supporting this practice. They may even see contradictions between recovery-oriented and evidence-based practices, struggling to know what to do. They often ask, for example, “Am I supposed to follow clinical guidelines and offer evidence-based practices or am I supposed to do what the client says he or she wants? What if those two things are not the same? I can’t do both.”
As noted already in Concern 10, PCCP does not equate to “giving the client whatever he or she wants.” Practitioners practice within their areas of expertise, offering interventions for which they have been trained and in which they are skilled. What PCCP requires is for the delivery (or not) of these services to be based on a collaborative decision-making process in which the person plays a central role in weighing the evidence and determining which services and supports will likely be most useful in helping him or her to have the kind of life he or she will find worth living. Rather than being in conflict with “evidence-based practices,” this emphasis on the central role of the person’s own needs, values, and preferences in decision making is actually one of the three core components of evidence-based medicine, from which the emphasis on evidence-based practices has arisen. Evidence-based medicine refers to practitioners using (i) their own clinical judgment in combination with (ii) educating patients about the accumulated evidence in support of the various options available to treat their condition, while (iii) respecting each patient’s right to make his or her own health care decisions (except in extenuating circumstances). This definition is also consistent with the definition of “patient-centered medicine” offered by the US Institute of Medicine (IOM) , which, over a decade ago, established “care that is respectful of and responsive to individual patient preferences, needs, and values, and ensures that patient values guide all clinical decisions” as the expected standard.
Concern 4. Person-centered care makes sense only when the person has accepted treatment and it has been effective. But many people with severe mental illnesses are too disabled to pursue recovery goals. The first step is getting their clinical issues under control. Later, they can make their own choices.
Practitioners who work with persons with serious mental illnesses may initially consider PCCP to be a luxury that can not be afforded until well along in a person’s recovery, once the person is “clinically stable” or relatively asymptomatic. They might suggest that: “Person-centered care sounds great for people who are well on their way to recovery, but the people I see are so ill, they’re not ready to be in the ‘driver’s seat’ of their own care. First they need to accept having a mental illness, accept their need for treatment, take their medications. Then, once they’ve got the illness under some control, we can revisit goals like getting to school, a job, or a new place to live.”
Undoubtedly, there are times when persons with serious mental illnesses want to be taken care of by others, just as there are times when people who do not have serious mental illnesses want to be taken care of. In the case of serious mental illnesses, such times may be when they are experiencing acute episodes and/or are in extreme distress. On the basis of first-person accounts of people in recovery and on the collective wisdom of various laws and accrediting or commissioning bodies, we are not to take this preference for being taken care of for short periods to generalize to the remainder of the person’s life. The majority of persons with serious mental illnesses will spend only about 5% of their adult lives in acute episodes and/or extreme distress, and the remaining 95% will be spent in periods of relative symptomatic and functional stability . It is during this 95% of the time that PCCP is best carried out, including planning, through the use of proactive crisis plans or psychiatric advance directives (PADs) (discussed in greater detail later in this module), for how the person would like to be cared for and supported during that 5% of the time when he or she may be too incapacitated to make his or her own decisions.
For those people for whom the 95% rule does not appear to apply and/or who may seem too disabled to make their own decisions on an ongoing basis, we suggest that there remains a significant amount of latitude for practitioners to elicit and be guided by the person’s own values, needs, and preferences. It is equally important for persons with significant disabilities to have as much choice as possible as it is for anyone else, even if that choice has to be based on a restricted range of options due to the person’s condition and circumstances. Simple examples of how this principle can be honored in practice are in asking people in institutional settings how they would like to spend their time, what and with whom they would like to eat, and what activities would give them some degree of pleasure, rather than insisting they first participate in treatment and other activities that have proven not to be effective for them in the past. Even if these core treatment activities did have some effectiveness, to expect someone to solely and rigidly move through a predetermined continuum of care is, we suggest, a subtle yet pernicious form of coercion that undermines the sense of agency needed for recovery.
Unfortunately, despite the positive changes brought about over the past decade or so by system transformation, it is still not uncommon for individuals to be expected to jump through clinical “hoops” and demonstrate clinical stability before moving on to pursue broader life goals (e.g., requiring 6 months of medication compliance as a prerequisite for referral to supported employment or dictating a certain level of compliance with unit groups before being allowed to participate in a hospital’s treatment mall rehabilitation program). Ironically, engagement in these personally preferred activities is often the factor that ultimately increases the person’s desires to acknowledge and begin to work on many of the “core” clinical issues that may interfere with their progress. If treatment is not viewed as moving the person closer to the things he or she values in life, if it does not increase the person’s sense of meaning, purpose, or pleasure in life, then what motivation does the person have to “accept” having an illness or needing treatment?
Finally, the consumer/survivor/service user literature has argued that much of what practitioners view as apathy, passivity, or a lack of motivation in persons with serious mental illnesses is actually due to “learned helplessness”  stemming from years of having other people take over control and decision-making authority for their lives. Just as the process of sharing power and responsibility in care planning may at times pose a disconcerting shift in roles among some mental health practitioners, many persons with serious mental illnesses may truly want to exert greater control over their lives but feel unprepared to do so. To the degree that this is a contributor to a person not wanting to make his or her own decisions or to take a backseat in care planning, the process of reinstilling a sense of control, competence, and confidence in a person’s own decision-making capacity will require time, incremental successes, and provision of mentoring and skill-building opportunities specific to the process of PCCP.
Concern 3. Person-centered care planning takes time and is labor intensive. With high caseloads, practitioners simply do not have the time it takes to do it.
Harried and overworked practitioners understandably complain: “I have to fill out piles of paperwork on loads of clients on a tight timeline and there’s just no way I can discuss everything with each client first—especially when the client doesn’t show up half the time! How can I get my paperwork in, keep my supervisor off my back, and still do PCCP?”
We acknowledge that mental health practice in today’s fiscal climate balances on razor-thin margins. Budget deficits, or shifting political priorities, have led to stretching limited resources, making this seem like an unpropitious time to advocate for the expansion of PCCP, which might seem at first to make additional demands on the limited time practitioners have. Yet research shows that while having intensive conversations regarding the life context, aspirations, goals, and strengths of individuals may require more time up front, this investment in developing a collaborative relationship tends to be time and labor saving in the long run . Not only are people more likely to attend appointments that seem relevant to what they want out of life—thus cutting down on the high rate of “no shows” in outpatient clinics —but practitioners are also more likely to elicit the much needed information that saves them from wasting time on activities that may not benefit the individual (e.g., encouraging compliance with medications that are not effective) and enables them to focus their efforts where they are most likely to have an impact. In addition, shifting the focus to the person’s own responsibility for and role in recovery allows practitioners to shift from an onerous “do to” or “do for” perspective to a collaborative “do with” perspective, fostering increasing independence on the part of the individual and shifting care from a reliance on shrinking institutional resources and solutions toward more of an integration of natural community connections and supports, which in turn lead to increasing integration of the person into the life of his or her community.
Finally, program evaluation findings on PCCP models suggest that this approach to care can interrupt costly cycles of reactive crisis response, leading to reductions in hospitalizations, incarcerations, and assaultive or self-injurious behavior . We suggest that the frequent management of such crisis situations stretches systems and practitioners far more than the additional time needed to engage in more proactive and collaborative PCCP. Ultimately, PCCPs may take more time to create than the cookie-cutter documents that still populate many medical records in mental health systems across the globe. However, we view this as time well spent and suggest that it is a prudent investment in improving the quality of our partnerships with, and the quality of life among, persons in recovery.
Concern 2. Person-centered care planning is not consistent with the concept of “medical necessity” and therefore will not be reimbursed. It is also not consistent with the stipulations of regulatory and accrediting or commissioning bodies.
Worried practitioners have expressed the fear that implementation of PCCP will have dire consequences for their agencies, and therefore for their livelihoods. They have argued: “We can’t lose our accreditation and our income. Our funders and regulators will not allow us to focus on ‘recovery’ goals. They’re primarily interested in our treating illnesses. We’ll be cited or have paybacks.”
Our response to this concern builds on the response we gave to Concern 9, related to how PCCP seems to challenge, if not violate, professional roles and identities. In this case, the concern is that PCCP is not consistent with the traditional, so-called narrow “medical model” and the regulatory and funding bodies that have historically governed mental health care. Our response to this concern is complex, as the issues involved are themselves complex.
First, regulatory, accrediting, and governmental bodies have been for some time, and are currently, ahead of everyday practice regarding the importance placed on person-centered and goal-directed care. Individually tailored care oriented to each person’s unique condition and circumstances and focused on the achievement of each person’s expressed goals has been their mandate for years, even prior to the advent of person-centered care in mental health per se. In addition, care is to be delivered only with the informed consent of the person (in all but the most extenuating of circumstances) and is expected to be strength-based, culturally competent, and responsive to each person’s individual life context, and all of these domains are to be documented adequately in the person’s medical record. Indeed, much of the funding for the work on which this manual is based was awarded by the US Centers for Medicare and Medicaid Services (CMS), the bastion of health care that is responsible for the very notion of “medical necessity.”
These facts do not negate practitioners’ concerns, however, that PCCP principles do not seem to translate readily into the categories and concepts of conventional care plans. Were they to do so, though, we would have to question how much their introduction can effect actual and substantial changes in the way we provide care. Efforts must therefore be made to reconceptualize care plans and documentation tools to become person-centered, strength-based, and goal-directed. Doing so does not minimize the importance of illness, deficits, and problems, but does reframe them within the context of the person’s overall life. That said, it remains true that CMS, for instance, will not (yet) provide reimbursement for certain services or supports that some persons with serious mental illnesses desire and will find useful. For the time being—until, that is, these regulatory, accrediting, and funding bodies move further in the direction of self-directed care and flexible funding—other sources of funding will need to be identified for these kinds of services (e.g., transportation or job coaching) or they will need to be secured beyond the parameters of the formal mental health system in the community at large. Ultimately, this may be a solution that will be both cost-effective and consistent with the desire of persons in recovery, who seldom wish to live out the entirety of their lives within the mental health system.
Even presently, though, it is common for practitioners to view regulatory and funding bodies as more formidable barriers to providing person-centered care than they in fact need to be. We believe this derives from two fundamental misconceptions. First is the belief that person-centered planning is somehow “soft.” Second is the belief that funders will not pay for life goals such as helping someone to finish school or return to work.
Contrary to the common myth that person-centered planning is “soft,” emerging practice guidelines explicitly call for the documentation of (i) comprehensive clinical formulations that include (ii) mental health-related barriers that interfere with functioning along with (iii) strengths and resources that can be used to achieve (iv) short-term and measurable objectives using (v) clearly articulated interventions that spell out who is doing what on what timeline and for what purpose . On the basis of hundreds of chart reviews done by the authors and our colleagues, we suggest that these standards for PCCP documentation are on par with, if not superior to, the level of rigor that currently exists in most care plans.
Second, the belief that funders will not pay for nonclinical goals is actually a correct one; not, however, because of the nature of the goal itself, but because of the fact that funders do not pay for goals at all. Rather, they pay mental health practitioners for the interventions and professional services and supports they provide. In our experience, these services and supports will be funded if they help people overcome documented mental health and/or addiction-related barriers that interfere with their everyday functioning and the attainment of their valued life (i.e., “recovery”) goals. In other words, interventions may be considered “medically necessary” when they are required following the impact of a mental illness on one or more functional domains in a person’s everyday life. Social isolation offers an excellent example. In most cases, it is understood to be both a sequela of mental illness that causes suffering and a factor that impairs overall health. On this basis, interventions that aim to increase a person’s social functioning can most often be reimbursed should they be required by the nature of the person’s illness and consistent with the person’s own desires to have a broader social network, including the goal of “I want to find a partner and get married.”
This is admittedly a broad-brush review and we acknowledge that each locality may be subject to its own unique funding and regulatory expectations, a full discussion of which is beyond the scope of this manual. However, we maintain that medical necessity and PCCP are not incompatible constructs and that care plans can be created in partnership with persons in recovery and their loved ones while still maintaining rigorous standards in treatment and care planning and documentation.
Concern 1. Allowing people with serious mental illnesses to set their own goals and make their own decisions increases risk and exposes practitioners, and their agencies, to increased liability.
Fully aware of their agency’s and supervisor’s concerns with risk management and liability exposure, practitioners may well wonder: “Isn’t impaired judgment one of the core characteristics of serious mental illness? If I give my clients choices, and they make bad ones, won’t I be the one held responsible? When things go wrong, I’ll get the blame.”
PCCP does not override a practitioner’s ethical and societal obligation to intervene on a person’s or the community’s behalf should someone pose a serious and imminent threat to self or others. In such cases, just as in the case of an automobile accident or traumatic brain injury, health care practitioners are sanctioned to intervene on the person’s behalf without getting prior consent. In psychiatry, as in most other branches of medicine, however, such cases are the extremes and the exceptions, not the norm. Consistent with our response to Concern 4 above, research suggests that most people with most mental illnesses pose few if any risks most of the time. Risk can be exacerbated by substance use and by nonadherence to medication, but even then the risk posed by people with serious mental illnesses pales in comparison to the risks they face from others, as it is much more common for a person with a serious mental illness to be the victim of a crime than to be a perpetrator [13 14].
What these data suggest is that heightened concerns about increased risk and liability are misplaced when applied to most persons with serious mental illnesses most of the time. In the circumstances in which they are warranted, prudent risk assessment and management are central and crucial aspects of effective care. PCCP does not do away with, or replace, this need. What PCCP insists, though, is that when risks are determined not to be present, as is the case the vast majority of the time, that the person be encouraged to make his or her own choices, as he or she is entitled to by law. Otherwise, coercion in the absence of risk places undue restrictions on the liberty of persons with serious mental illnesses, with individual liberty being one of the most important and central values held in democratic societies.
But how do we respond to the objection that persons with serious mental illnesses will make bad choices or demonstrate poor judgment when left up to their own devices, more as a result of their illness than as a genuine exercise of their autonomy? Family members or guardians, in particular, may insist that their loved one should not be allowed to make certain decisions that they know this person would not make were he or she well, that is, not under the sway of a mental illness. While it is certainly understandable for family members or guardians to have such firm convictions—and they are fully in their rights to try to persuade their loved one to make different choices—practitioners are obligated ethically first and foremost (in the absence of imminent risk) to honor the decisions of the service user.
Fortunately, and despite the stereotype about impaired judgment, research has shown that people with serious mental illnesses on the whole make decisions about their care in ways very similar to people with other medical conditions. That is, some people with mental illnesses make good decisions most of the time, some make good decisions some of the time, and some make good decisions only occasionally. But this is also true of the general population . People who do not have a mental illness are in general no better at decision making than people who do, meaning that people who have a mental illness are in general no worse at decision making than people who do not. Currently, the only legal or statutory basis for interfering with an individual’s personal sovereignty (other than in situations of serious risk) is when the person has been determined by a judge to be incapable of making his or her own decisions and, as a result, has been assigned a legal guardian or conservator of person. Even in those cases, the law often insists that the judge outline those specific areas in which the guardian or conservator is authorized to override the person’s own choices. Short of this, the majority of individuals with serious mental illnesses retain both the right and the responsibility of making their own decisions and of dealing with, and learning from, the outcomes of those decisions. As Patricia Deegan has reminded us in arguing for people to retain “the dignity of risk and the right to fail” , that is the way most adults learn most things in life.
Where, then, does this leave the compassionate practitioner who wishes to support a person in making his or her own choices, but who fears that the person is making detrimental decisions that are likely to jeopardize his or her recovery and well-being? There can be many such dilemmas in practice, including people who choose not to take medications that appeared to be helping them, people who remain in relationships with others who physically and/or emotionally abuse them, people who keep making the same bad decisions over and over again and appear not to be learning from their mistakes, and so on. In these and similar situations, we argue strenuously against the stance that practitioners should abandon service users to their bad choices or sit silently by on the sidelines in the name of being “person-centered” or in the hope that the person will eventually learn from suffering the “natural consequences” of a pattern of apparently self-defeating choices. Honoring the “dignity of risk and the right to fail” does not equal neglect. Rather, in keeping with the emerging best practices in recovery-oriented care , we suggest that the role of the practitioner in such situations is to remain fully engaged with the person in exploring what a given choice means to him or her, why it seems so important, and what the potential pros and cons are, and in brainstorming alternative choices, ensuring that the person has all the information necessary to make a fully informed decision. Practitioners are also encouraged to use motivational interventions to identify, explore, and resolve ambivalence the person may feel about his or her decisions, hoping that gradually, over time, he or she will make those choices that are in his or her best interest.
Barring any immediate safety concerns, though, it is the person’s decision to make, just as it is in other health care arenas. Following the kind of collaborative explorations and discussions described above, the person may, in fact, arrive at different decisions from where he or she began. On the other hand, practitioners may gain additional insights into why it is important for the person to make the decisions he or she makes, and might well be surprised when those decisions turn out to be less detrimental than he or she originally thought. In addition, compromises become possible within the context of trusting relationships when the person fully believes that the practitioner wants what is best for him or her (as opposed to what is expedient or safe). However, we recognize that there also will be circumstances in which the person and the practitioner will need to “agree to disagree” for the time being, while remaining nonetheless engaged in a caring relationship. At these times, practitioners may remain concerned that they are failing to meet their ethical obligations or exposing themselves to liability by not insisting that the individual do what the practitioner deems best or even by stopping the individual from doing what he or she wants to do. The most prudent actions in these cases, when there is no evidence of serious and imminent risk, is for the practitioner to document fully and faithfully in the person’s medical record the discussions that he or she has had with the person, including his or her own efforts to communicate concern, to provide necessary information and support to persuade the individual to act differently, to propose alternative courses of action, and, of course, to assess risk.
While every situation needs to be evaluated on a case-by-case basis, and every person is different and will pose unique challenges and dilemmas, we believe that this represents a balanced perspective that respects both the person’s right to make his or her own decisions and the practitioner’s need to ensure that he or she has done his or her due diligence and upheld his or her professional and ethical obligations.
I pretty much carry my PAD around everywhere. Once… it was really crowded in the ER so I showed intake my psychiatric advance directive and told them that I needed to go somewhere quiet… so that I could calm down… The intake nurse sat with me in a quiet room until I calmed down.
—Person in Recovery on her experience with Psychiatric Advance Directives