Ethical considerations for providing vocational rehabilitation services to individuals with chronic pain

6.1 Respecting diversity

VR professionals have an ethical obligation to respect and value the diversity of all clients. This ethical principle is especially relevant to individuals with chronic pain for two reasons. First, although each individual with chronic pain is unique, those most affected by chronic pain are from traditionally underrepresented groups. These are the same groups that rehabilitation researchers have established are unserved or underserved by the state-federal VR program (Koch & Rumrill, 2017). Secondly, chronic pain is a condition that is impossible to fully comprehend unless one personally experiences it. The shared experience of disability, stigmatization, invalidation, and discrimination among people with chronic pain, arguably, constitutes a unique subculture for this disability population. Because of their shared experiences, numerous support and self-advocacy groups and organizations have been founded to combat the stigma associated with chronic pain and to advocate for better access to appropriate pain treatment.

To respect diversity, rehabilitation counselors must take inventory of their own potential cultural stereotypes and biases related to individuals most affected by chronic pain as well as their stereotypes and biases about individuals with chronic pain in general (Koch & Rumrill, 2017). They must then educate themselves about the facts related to race, gender, gender identity, sexual orientation, age, socioeconomic status, and chronic pain (e.g., the intersectionality of these identities with pain; chronic pain conditions that are overrepresented in specific populations; cultural myths and stereotypes about chronic pain; the pervasive problem of ineffective and undertreatment of chronic pain in marginalized populations).

Furthermore, VR professionals must understand that, due to prior prejudicial treatment by health care and human services professionals, individuals with chronic pain may anticipate the same from them (Koch & Rumrill, 2017). In these cases, VR professionals should not take it personally or view these clients as uncooperative or difficult. Rather, they should prove negative anticipations wrong and treat these individuals in a manner that promotes feelings of being understood, respected, and validated. Of utmost importance is to ensure that individuals with chronic pain experience a sense of hope after meeting with VR professionals. Finally, VR professionals should incorporate cultural practices used by clients into plans for the treatment and management of chronic pain. These practices may include prayer, meditation, complementary medicine, spiritual healing, and counseling with elders or religious leaders.

6.2 Professional disclosure statement

In explaining the roles and functions of rehabilitation counselors and procedures that may be used in the rehabilitation process, rehabilitation counselors must understand how chronic pain may influence participation in rehabilitation planning and discuss with clients how to address pain interference that may affect their participation. This requirement should apply to the practices of all VR professionals. Clients with chronic pain should also be informed about agency, programmatic, or organizational policies regarding drug use, whether it is legal or illegal. Furthermore, VR professionals have a responsibility to advocate for policy changes that may discriminate against individuals with chronic pain. They should also be knowledgeable about federal and state laws regarding use of medical marijuana or opioid analgesics so that they can accurately inform their clients. Finally, it is important to discuss with clients employer drug policies or drug testing and educate employers about use of medications for pain management rather than for recreational purposes.

6.3 Support network involvement

It is imperative that VR professionals involve members of clients’ social networks in the VR process only when they are viewed as supportive and helpful by the client with chronic pain (Koch & Rumrill, 2017). As previously stated, individuals with chronic pain may experience invalidation and lack of understanding and support from family members and friends. In these cases, VR professionals can encourage clients to consider involving people other than their family (e.g., friends, support group members, advocates) whom they identify as strong allies.

Clients may also desire to enlist the involvement of VR professionals to educate family members and friends about chronic pain and its consequences. Sometimes when this information comes from a professional, it is more likely to be believed and taken seriously than when it comes only from the individual with chronic pain. Additionally, VR professionals can encourage clients to enlist the support of medical and healthcare providers to educate significant others. Inviting family members to support group meetings can also help to better inform family members as well as provide them with an opportunity to see that the client is not the only one struggling with the issues that the family has treated as invalid. Team meetings of all service providers designated on the client’s VR plan can be scheduled by the VR professional for the sole purpose of educating family members and answering their questions. Also, VR professionals can assist clients to obtain educational resources to provide to family members.

Finally, VR professionals should be familiar with local and on-line support groups for individuals with chronic pain. These support groups can have many benefits for individuals with chronic pain. They can reduce the sense of isolation that people with chronic pain often experience, provide a safe place for them in which they feel validated and understood, and introduce clients to pain coping strategies used by others that may also be helpful to them (Munir, Randall, Yarker, & Nielson, 2009; Toye & Barker, 2010). However, individuals must be matched with appropriate support groups or they may experience harm instead of help. For example, referring individuals newly diagnosed with a condition that causes chronic pain to a group that consists primarily of members who have progressed further in their illness can be discouraging to the newly diagnosed client. For this reason, organizations such as the National Multiple Sclerosis Society offer support groups exclusively for newly diagnosed individuals. Likewise, support groups consisting primarily of members who do not work may not be helpful for individuals with chronic pain who do work or desire to return to work. Wakefield, Bickfield, and Sani (2013) noted that membership in support groups, in and of itself, is not sufficient for individuals to benefit. Rather, the individual must experience a sense of belonging and commonality with other group members to experience the benefits of self-help and support groups.

6.4 Avoid value imposition

All VR professionals have personal beliefs and values that can shape their perceptions of individuals with chronic pain and how pain should be treated. Many values regarding the severity and treatment of chronic pain are based on myths and misperceptions. VR professionals have an ethical obligation to take a personal inventory of their own personal beliefs and values and consider how these may negatively or positively influence their practices. Koch and Rumrill (2017) recommend that, in taking inventory, professionals ask themselves questions such as: How do I interpret and respond to individuals’ complaints of pain? Do I take their complaints seriously and respond with empathy and compassion or do I suspect their pain is exaggerated or not real? What are some of my biases about pain management and treatment? Do I view some chronic pain conditions as real and others as imaginary? How are individuals with chronic pain viewed within the setting where I work, and how have these views affected my own perceptions? What sources of information will challenge my biases and provide me with a better understanding of chronic pain and its treatment? Following their personal inventory, VR professionals can then (a) educate themselves about the facts to replace assumptions that are inaccurate and (b) increase their knowledge about specific conditions associated with chronic pain.

Additionally, VR professionals should understand the difference between certain terms that are often confused and can lead to misunderstandings about the sources and severity of pain as well as the advantages and disadvantages of treatment options. For example, people with chronic pain are often viewed as overly sensitive to pain, and their oversensitivity is attributed to personal characteristics such as weakness, hypochondriasis, attention-seeking, or laziness. These inaccurate perceptions, as we have discussed, stem from confusion between the terms pain threshold and pain tolerance. Likewise, negative perceptions regarding the treatment of chronic pain with opioid analgesics are partially attributed to confusion between the terms addiction and dependence. The National Institute on Drug Abuse (2016, para. 1) defines addiction as a “chronic, relapsing brain disease that is characterized by compulsive drug seeking and use, despite harmful consequences.” Drug dependence, which can occur with long-term opioid use, is the body’s adaptation to a drug that requires larger doses to achieve the drug’s desired effect and results in withdrawal symptoms if the individual abruptly stops taking it (American Chronic Pain Association, 2015). With respect to dependence, many individuals with chronic pain do not need to increase the doses of their medications unless their pain has increased. However, if they abruptly stop taking these medications, withdrawal symptoms can occur. VR professionals should be familiar with this terminology so that they do not treat individuals who use opioid medications with suspicion and judgment or discourage the use of this treatment option if it has been recommended by a physician who has expertise in pain management, is closely monitored, and is effective at reducing pain and improving functionality.

6.5 Advocacy

Although advocating for the rights of individuals with disabilities and teaching clients how to self-advocate are important services for all VR clients, these services have unique implications for individuals with chronic pain. Because chronic pain is a highly stigmatized, hidden disability, individuals with chronic pain often struggle with issues of impression management and disclosure. Impression management involves efforts to balance (a) not appearing too sick, needy, or dependent to avoid misinterpretations of their motives with (b) not appearing too well to avoid being undiagnosed, underdiagnosed, or undertreated for their pain (Toye & Barker, 2010). VR professionals can offer interventions (i.e., instruction and role plays) to assist with decision-making about disclosure and requesting accommodations. Mindfulness strategies (e.g., breathing exercises, meditation, body scans) can be useful in reducing the emotional distress associated with the prospect of making a disclosure and requesting accommodations (Koch & Rumrill, 2017).

Additionally, VR professionals can research websites of pain advocacy organizations to identify strategies and resources for supporting individuals with chronic pain to be self-advocates. They can also refer clients to these websites to identify self-advocacy approaches they can use themselves. These resources provide tools for partnering with people with chronic pain to reduce stigma and increase access to appropriate treatment. Finally, VR professionals can play an important role in assisting clients to develop health literacy and assertiveness skills for effectively communicating with physicians and health care providers.

6.6 Boundaries of competence

Providing services within the boundaries of practice may be challenging for VR professionals when working with individuals with chronic pain. These challenges may be especially pressing for professionals who have strong biases against certain treatment options (e.g., medical cannabis, opioid analgesics, complementary approaches) and subsequently fail to inform (or misinform) clients about these options. Likewise, VR professionals who themselves experience chronic pain must refrain from offering medical advice (i.e., recommending medications or other treatment modalities that are effective for the professional). Although providing medical advice is outside the scope of practice of VR professionals, it is within their scope of practice of many VR professionals to inform clients about the various treatment options that are available to them and to make appropriate referrals (i.e., to specialists in pain medicine) for evaluation and exploration of the risks and benefits of available options. It is also within the rehabilitation counselor’s scope of practice to provide counseling and guidance to address adaptation to chronic pain; client feelings of being misunderstood, stigmatized, invalidated, and discriminated against; pain management strategies and resources; coping skills; disclosure decisions; and accommodation planning. Rehabilitation counselors should not underestimate the therapeutic value of the counseling and guidance they provide to clients with chronic pain.

Rehabilitation counselors and some other VR professionals also have the expertise to screen for co-occurring conditions such as anxiety, depression, and substance use disorders. When it is suspected that individuals may be struggling with these co-occurring conditions, these concerns should be addressed with clients, and appropriate referrals for evaluation and treatment should be made to clinicians who treat co-occurring conditions but also have expertise in chronic pain. These specialists may include clinical rehabilitation counselors, rehabilitation psychologists, psychiatrists who have expertise in treating individuals with chronic pain, and other mental health professionals with this dual expertise. As a caveat to keep in mind when making mental health referrals, VR professionals should reassure clients that these referrals are not being made because the validity of the client’s pain is questioned. Rather, it should be clearly explained that such referrals are made because of the magnitude and intrusiveness of chronic pain into one’s life (Koch & Rumrill, 2017).

6.7 Avoiding harm

When providing VR services to individuals with chronic pain, avoiding harm includes both the prevention of physical and psychological harm. Avoidance of physical harm occurs when the VR professional does everything possible to ensure that meetings with the professional and all providers involved in the VR assessment and planning process cause minimal pain. Appointments should be made during times when the individual is in the least amount of pain, and VR professionals should be alert to signs of fatigue or discomfort and adjust meetings accordingly (i.e., shorten the length of meeting or schedule a phone meetings). When meeting with clients, VR professionals should ask clients what they can do to increase their physical comfort. For people with certain chronic pain conditions, even small gestures such as a firm handshake, pat on the back, or squeeze of the shoulder can cause pain. VR professionals should also set up their offices to avoid hazards that may lead to tripping or bumping into furniture. Additionally, they should offer different seating options as well as opportunities for clients to move around as needed. During these meetings, they should periodically check in with clients to see how they are feeling. VR professionals who provide on-the-job supports should be alert to work activities that increase pain and identify appropriate accommodations to minimize pain. In these cases, the VR professional and client may work with other rehabilitation professionals such as physical and occupational therapists to (a) assess worksites and job functions and (b) identify and implement modifications necessary to minimize pain. Making appropriate referrals to outside providers is also imperative to avoiding physical harm to clients. Some treatments may exacerbate, rather than alleviate, pain. VR professionals should consult with the client as well as specialists in pain medicine or specialists in treating the specific condition causing the pain to ensure that appropriate referrals are made and to avoid causing physical harm.

More complicated is the need to avoid causing emotional harm. When clients say they are in pain, they must be believed and should be treated with empathy and validation rather than judgment and suspicion. Otherwise, the VR professional may cause the client to become emotionally distressed. Invalidation of one’s pain can result in increased pain as well as feelings of hopelessness, despair, and isolation. Even statements meant to be helpful can be harmful to the client. Examples of these types of statements include: “Be thankful it’s not life-threatening” r “At least you don’t have rheumatoid arthritis,” “ At least your condition isn’t progressive,” “It could be worse,!” or “A positive attitude goes a long way!” Tone of voice and facial expressions can even be harmful, especially if they are interpreted by the client as being judgmental, condescending, or invalidating.

Relatedly, VR professionals should be cautious not to misinterpret client pain behaviors as lack of interest, failure to adhere to treatment and VR plans, or lack of motivation. What may appear to be a lack of interest during appointments may actually be fatigue or pain flare ups that cause irritability as well as difficulties with attention, memory, and concentration. In these cases, appointments may need to be shortened or rescheduled. Missed appointments may result from a variety of factors other than lack of motivation including pain flare ups, “brain fog” that can cause forgetfulness, and client perceptions that the VR professional invalidates his or her pain. When clients miss appointments, it is important to contact them, and, in cases in which these missed appointments are due to flare-ups or forgetfulness, to develop back up plans, reminders of appointments, alternatives to in-person appointments, or scheduling of appointments during times of the day when clients are in the least amount of pain. When clients perceive that the VR professional invalidates their pain, these professionals should engage in reflective practice to identify biases that may be affecting how they interact with these clients. Then they should seek out consultation and continuing education to correct these biases. Additionally, they should engage in thoughtful discussions with clients about how to be more empathic and affirming.

6.8 Culture and diversity in research

In conducting research on chronic pain, VR researchers should ensure that their research samples are representative of the demographics of individuals with chronic pain. Research is needed to examine cultural influences on beliefs about chronic pain and its sources, help-seeking behaviors, and culturally-appropriate VR practices. Research is also needed to examine (a) practitioners’ general biases about chronic pain as well as cultural biases in relation to pain that prevent individuals from receiving appropriate treatment and rehabilitation and (b) strategies to ensure that individuals from vulnerable populations have equal access to appropriate treatment and VR interventions.

Because individuals with chronic pain are the “best experts” on how chronic pain impacts their lives and often find research to be invalidating or misrepresentative of their experiences, researchers should focus on conducting investigations of problems that are important to these individuals (e.g., accessing appropriate treatment, reducing stigma about chronic pain). Measurement instruments can then be developed with items that represent the actual pain experiences of individuals with chronic pain rather than those that are presumed by clinicians and researchers to be their experiences.

6.9 Precautions to avoid injury in research

Many individuals with chronic pain are constantly researching ways to minimize their pain, and they often read empirical articles written by rehabilitation researchers. In many cases, they view the constructs and measurement instruments used by these researchers to be misrepresentative of their lived experiences and even potentially harmful. To ensure that research is helpful rather than invalid and potentially harmful, researchers should involve individuals with chronic pain in a participatory action approach to identify methods to address their concerns rather than the concerns generated by researchers. Again, foremost among their concerns are reducing the stigma of chronic pain and increasing access to appropriate and effective treatment and rehabilitation.

Several other approaches to conducting research that is helpful rather than harmful are recommended. First, researchers can conduct qualitative meta-syntheses of prior research on the experiences of individuals with chronic pain to identify constructs and variables important to them. They can also use focus groups to obtain input from individuals with chronic pain when designing or modifying measurement instruments. Additionally, they should avoid using constructs that invalidate individuals’ experiences or lead to further stigmatization. For example, many individuals with chronic pain are offended by the term “pain catastrophizing,” believing that it implies that their pain is “all in their heads.” Using the term “pain cognitions” may be less stigmatizing and more accurately represent individuals’ cognitive responses to chronic pain.

Measurement instruments should be designed to include both deficit- and asset-oriented items to obtain a better understanding of how individuals cope with chronic pain as well as factors that both impede and promote coping. Researchers must also keep in mind that pain severity, fatigue, activity level, and mood fluctuate from day to day or even within the same day. Many individuals have ongoing pain as well as unpredictable flare-ups that may last days or months. Others, such as those with chronic migraines, have unpredictable pain that may last from hours to days. In the midst of excruciating flare-ups or migraine attacks, it is understandable that individuals would experience “catastrophic” thinking along with symptoms such as anxiety and depression. However, once the flare-ups or migraine attacks abate, they are likely to more optimistically think about their ability to cope with their pain, and their depressed or anxious mood is likely to be reduced or cease altogether. Therefore, longitudinal research using advanced statistical modeling techniques is recommended to measure the complex interactions among pain cognitions, symptoms of anxiety and depression, pain intensity, flare-ups, unpredictability of pain, activity level, coping thoughts and behaviors, and environmental factors influencing pain experiences. This approach to examining the intersectionality of illness- related variables, individual characteristics, and environmental factors influencing pain cognitions will help researchers to better understand the complexity of chronic pain and assist VR professionals to use individualized and targeted interventions to facilitate VR goal achievement.