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Because you are reading this, it is likely that you are going through the experience of having a loved one hospitalized with a psychiatric illness. Our hearts go out to you.
This guide has been developed to help you through the transition and the confusing maze that is our healthcare system. Because families come in all shapes, sizes, and combinations, everyone’s experience will be different. The one thing that is consistent, however, is that families play a vital role in the recovery process.
Inspired by our clinical social workers’ countless meetings with patients, families, and McLean’s Patient and Family Advisory Council, this guide addresses questions that are often posed by families as their loved ones prepare to leave an inpatient unit at McLean.
Thank you to all of the family members who have advised us by sharing their insights, perspectives, and suggestions as we developed this guide.
Our goal at McLean Hospital is to help you and your loved one by affirming hope, supporting treatment, and helping everyone move forward with new knowledge, skills, and realistic expectations.
We hope that you will find this guide helpful. Please visit each of these sections to learn more:
Your loved one is taking the positive step of getting out of the hospital. It may seem counterintuitive, but transitioning out of the hospital may be unsettling for some people. The ultimate goal during this potentially stressful time is to work to transition your loved one back into the community, minimizing stressors whenever possible. The inpatient treatment team will work with patients and their families to develop a comprehensive plan to address symptoms, treatment needs, and goals while simultaneously working to empower the individual in his or her recovery. Having appropriate clinical treatment and care following discharge helps reinforce this transition.
“Recovery refers to the process in which people are able to live, work, learn, and participate fully in their communities. For some individuals, recovery is the ability to live a fulfilling and productive life despite a disability. For others, recovery implies the reduction or complete remission of symptoms. Science has shown that having hope plays an integral role in an individual’s recovery.”
(Achieving the Promise: Transforming Mental Health Care In America. President’s New Freedom Commission on Mental Health, 2003)
As your loved one transitions from McLean to the next step in the recovery process, it is important to remember that you are not alone. In any given year, one in four Americans age 18 or older suffers from a diagnosable mental disorder while one in 17 is diagnosed with a severe mental illness such as schizophrenia, bipolar disorder, or major depression. The good news is that with proper treatment, about 90% of individuals with psychiatric illness are able to live productive lives.
No matter your loved one’s diagnosis, the recovery process will be challenging. One family member has characterized caring for someone with mental illness as “a marathon rather than a sprint.” She went on to say that “while there may be a great sense of helplessness at times, there are things you can do as a family member to help in the recovery process. A supportive and informed family is enormously important as the patient and his or her physician strive to gain control. Patience and information are powerful weapons in this struggle.”
McLean’s social workers have identified the following key messages as essential for families during the transition of their loved one from the hospital:
The experience of a family member’s battle with psychiatric illness can be difficult—especially in the beginning when little might be known about the illness, the prognosis, or realistic recovery expectations. Family members might ask “Will things ever return to normal?” and “When can we have our old lives back?”
Psychiatric illness varies greatly in severity and course. For some people, the symptoms affect functioning, cognition, and important relationships only during the most acute phases while others may experience more permanent impact. In addition, psychiatric illness is often a lifelong condition in which ongoing treatment might be necessary and relapse is not unusual. Many patients and families coping with psychiatric illness find it necessary to adapt and learn new ways of managing symptoms. The impact this has on everyone’s life will be substantial and long-lasting. That being said, there are many proven treatment options for the various types of psychiatric illness. It is important to remember that recovery is possible.
Relapse, or the return of severe psychiatric symptoms after a period of recovery, is a common occurrence for people with psychiatric illness and serves as a learning experience for patients, families, and treatment providers about the effectiveness of the current treatment plan. There are many factors that impact the likelihood of relapse, including the severity of the psychiatric illness, adherence to medication and treatment recommendations, the strength of community support systems, and general life stress.
As a family member, it is important that you address early signs of relapse quickly and, although it can be challenging, remain calm and nonjudgmental. Share your concerns with your loved one and reach out to treatment providers as soon as possible to get assistance with next steps. Always remember, if it is an emergency or a situation is out of control, call 911 or go to the nearest emergency room.
Treatment is not a perfect science and we still have much to learn about psychiatric illness. New research is being done every day at McLean and worldwide to find the best treatments in the hope of someday being able to prevent these conditions altogether. No matter what, it is crucial for patients, families, treatment providers, and researchers to remain hopeful and positive about psychiatric treatment and recovery.
Following a patient’s discharge, family members often become caregivers, acting as the central support system for their loved one. As a caregiver, it is important for you to empower your ill loved one to engage in care while appropriately advocating for his or her needs. Each family is different and will therefore play various roles in their loved one’s treatment. For example, some families may be very directly involved in assisting with transportation to appointments or overseeing medication compliance, while others may be less directly involved but provide essential emotional support.
After discharge, your loved one may continue to experience some symptoms. Books and other resources in Appendix A include suggestions and strategies that can be very helpful to families.
It is important to work together to help support your loved one’s treatment. Talk with your family member’s care providers (as long as your family member has given consent). Seek information from the list of books and web sites in Appendix A as well as other reliable sources. You may also find valuable resources and support when attending educational courses such as the Family-to-Family program offered by the National Alliance on Mental Illness (NAMI). Collaboration is key to recovery, and therefore it is also helpful to talk directly with your family member about how he or she feels about his or her progress. Use this discussion to help guide your decision-making on keeping the strategies that are working and eliminating those that are not.
While your family member is hospitalized or transitioning out of inpatient care, it is important that you take care of your needs as well.
One way to do this is to build a support system that may include family, friends, and professionals. Sharing your experiences with others in both informal and formal settings—such as with a close friend or a support group for caregivers—can be extremely helpful. Once you’ve identified with whom you want to share information, you’ll have to decide what information to share and how to share it.
Two helpful resources located on the McLean campus are the Depression and Bipolar Support Alliance (DBSA) and the Jonathan O. Cole, MD, Mental Health Resource Center. DBSA offers regular support groups for families and friends; the Cole Center provides educational materials, support groups, and vocational counseling to patients. Please see Appendix A for more information.
Taking care of yourself and using positive coping skills are just as important for you as they are for your loved one. Remembering to practice the basics of overall good health, maintaining routines, and participating in the activities and hobbies that you enjoy can be very beneficial to your general outlook. Here are some tips for ensuring positive self-care:
If you are having problems coping or are experiencing any of the following symptoms, you may wish to seek professional help:
Just as the hospital treatment team collaborates with the patient daily and with the family throughout an admission, discharge planning requires similar coordination through phone calls and/or meetings.
McLean clinicians will work with you to arrange aftercare providers, coordinate care with existing providers, and make referrals to appropriate treatment programs and services. The goal is to meet the needs of the patient and to support goals that were identified during the admission and inpatient stay. Each patient is unique; therefore, each patient’s treatment needs and transition plan are customized to support the challenges that precipitated the hospitalization and the patient’s strengths and goals. The discharge planners make every effort to find programs, providers, and resources that are a good fit for each individual.
Because treatment needs change as the recovery process continues, plans may need to be modified from time to time. We recommend talking with the treatment team to clarify roles and family involvement that can be most helpful in planning treatment and support after discharge. Treatment resources, an individual’s ability to engage in treatment, availability of relevant care options, and financial resources are key variables that impact an individual’s care.
Determining the services most appropriate for your loved one’s ongoing treatment is a collaborative effort between the patient, family members, and the treatment team. The level of care your family member needs is determined by a multitude of factors that aim to provide care in the least restrictive environment. Some factors considered in this determination are:
The following are the most common levels of care available for those seeking psychiatric treatment.
Typically providing short-term care to patients whose severe symptoms require treatment in a locked facility.
Therapeutic environment providing intensive and multidisciplinary treatment in a live-in setting.
Unlocked unit providing patients in crisis support for stabilization, evaluation, and coping skills.
Individual and group therapy that take place during the day while the patient remains living at home or in the community.
An ongoing treatment program offering individual and group therapy to provide socialization and life-skills training.
Individual meetings with mental health providers to provide individual, group, and family therapy, as well as medication evaluation and management.
For a more detailed list of levels of care for individuals with substance use disorders or geriatric conditions, please see Appendix B.
During the course of your loved one’s recovery, you will probably come in contact with many types of professionals who provide mental health-related care. Finding appropriate aftercare or an outpatient provider is an important step in recovery. We understand that trying to decipher the dizzying array of titles, degrees, and licensing information can be very confusing. The following section has been created to help you understand more about these specialists and the services they provide.
Most professionals who provide mental health treatment to their patients have had graduate-level training in one of the following areas: psychiatry, psychology, social work, behavioral sciences, or psychiatric nursing. These professionals may also have specialized training and/or certification in order to practice with certain sub-populations (e.g., children, adolescents, and the elderly), utilize a particular treatment modality (e.g., family therapy), apply a therapeutic approach (e.g., cognitive behavioral therapy) or implement a specific set of skills (e.g., psychological diagnostic assessment).
The first step in finding treatment resources is determining exactly what type of provider is needed. It is important to know whether you need a provider who can prescribe medication or you need a therapist who practices a specific modality.
Brief descriptions of potential treatment providers follow; for more detailed descriptions, please see Appendix C.
Medical doctors who prescribe psychiatric medications and may or may not provide psychotherapy.
Doctoral-level clinicians who provide psychotherapy and psychological testing.
Master’s-level clinicians who help people function the best they can in their environment through direct therapy or by working to change social conditions.
Master’s-level clinicians who provide mental health counseling with an emphasis on prevention and education.
Clinicians with various degrees and licensure who provide counseling for individuals with substance use disorders.
Nurse clinicians with various degrees who provide psychotherapy and, with special licensure, can prescribe medications.
Clinicians of various degrees and licensure who provide psychotherapy.
Non-licensed clinicians trained to assist with the acquisition and coordination of community services and supports.
After finding out which type of provider you need, it is very helpful to call your insurance company to find names of specific providers in your area who accept your insurance. If you are changing treatment providers, you may also ask for a referral from the present provider.
It is important for you and your family member to feel comfortable with the choice of treatment providers. Collaborating with your loved one’s treatment team is crucial to determining which resources will best meet his or her clinical needs. When you speak with them for the first time, it may be helpful to ask them questions such as those found on the next page. You may want to call several providers to see who would be an appropriate match given their experience and availability. Although it is important to give the therapeutic relationship a few sessions to see whether it is a good fit, you and your family member can search for another provider at any time.
A treatment provider will typically devote the first few sessions to a general assessment of your loved one’s concerns by asking specific questions about the issues causing his or her distress and when and where these occur. It is hard to tell whether a provider is going to be a good match without meeting with the person and getting a feel for who he or she is, how he or she approaches patients, and how he or she formulates the treatment needed after making an assessment.
The first session with a treatment provider should always be a consultation that does not commit your family member to working with the provider. During this session, you may want to discuss personal values that you feel are particularly important. An important aspect of treatment will be your loved one’s relationship with the therapist (and you, to some extent). This first session is a time for everyone to determine whether they will feel comfortable and confident working with this particular provider. If the provider’s views are very different from the family member’s or yours, you may want to find a more compatible relationship.
As the evaluation progresses, you should expect that you and your loved one’s treatment provider will arrive at mutually agreeable goals for how to help your loved one. If goals cannot be agreed on, finding another therapist should be considered.
In order for information to be shared between the treatment provider and you, your adult family member must sign a release of information. If your family member chooses not to give permission for the provider to speak with you, you as a family member are still able to share information, since families are not bound by the Health Insurance Portability and Accountability Act (HIPAA); however, the provider will not be allowed to share information with you.
Helpful questions to ask a potential treatment provider are listed below. You have the right to obtain this information about any potential provider. You can request this from a referrer, during a phone call with the provider, or during your first visit. Although you may not feel that all this information is relevant, you will need a substantial amount of it in order to evaluate whether a particular provider would be a good fit.
All healthcare institutions abide by state and federal laws that protect the privacy of patient identity and information. This should be the case with all the treatment providers you encounter throughout your loved one’s recovery process.
Patients who are 18 years old or older are legal adults with legal privacy rights. HIPAA regulations prohibit clinical staff from identifying any person as a patient or sharing clinical information without a patient’s written consent. There are additional privacy protections under state law specifically for those with HIV or who are participating in alcohol and drug abuse treatment programs. Disclosures can occur without written consent in certain specific circumstances, such as with a court order or in a medical emergency.
All communication with a patient’s clinical treatment team during the course of a hospitalization is strictly confidential. Unless a patient provides written permission by signing a release of information form, clinical staff at McLean and other institutions cannot disclose information about the patient or treatment. Family members may be helpful in ensuring that a release is signed by the patient to allow communication between the family and the treatment team.
Patients may obtain a copy of their records by submitting a written request and authorization to a hospital’s medical records department. Patients will be provided copies of a discharge summary without charge, but requests for more extensive parts of the record will generally necessitate a copying charge. Most hospitals have a policy that allows patients’ families, legal guardians, or healthcare agents to request permission to either inspect a hospital record or obtain a copy of the discharge summary and other portions of a record. This request must be accompanied by the consent of the patient or other legally authorized person. In psychiatric hospitals, healthcare agents can access records only if a patient’s healthcare proxy has been activated and the patient is unable to make healthcare decisions for him- or herself. Although most requests are granted, access to a record may be denied if it will result in serious harm to the patient.
Although encouraging treatments are available for patients struggling with psychiatric illness, the recovery process is often very long; indeed, many individuals require some form of professional care for their entire lives. As a result, psychiatric illness often has a profound effect upon the finances of patients and families.
The age of the person with the illness and the severity of that illness are key factors to consider as one thinks about responsible financial management. The following are suggestions about how to think about financial resources and the need to protect the patient’s and the family’s assets over the long-term.
Many people feel uncomfortable discussing fees with treatment providers. However, a good provider will be willing to share this important information with a potential client without hesitation. If you find the provider is not forthcoming about fees and other related information, you may want to consider another provider. The following are questions regarding finances that you may want to address over the phone or during your first visit with your intended provider as you seek out the best specialist(s) for your loved one:
As mentioned before, recovery is more a marathon than a sprint, and it is possible that your loved one will need treatment for the foreseeable future, perhaps longer. Therefore, the possibility of having to pay for treatment over the long-term becomes an important consideration. When discussing choices, families should carefully consider treatment options and their costs along with their loved one’s ability to engage in treatment willingly.
It is also important to try to assess how financially responsible your loved one is. Remember that these illnesses can impair the very judgment that is needed to manage money responsibly and it may be necessary to collaborate with him or her in order to help manage his or her finances. In cases where more supervision is required, a guardianship or conservatorship (see Appendix D) may be needed. Social Security Disability Insurance (SSDI) is available for patients whose illness prevents them from maintaining employment, but this amount is quite small. After receiving disability benefits for two years, patients become eligible for Medicare coverage.
Since every family’s situation is unique, it is difficult to provide specific recommendations regarding financial planning. There are financial advisors and attorneys who are equipped to assist in determining the best way to protect assets, provide financial support, and ensure that your loved one’s ongoing needs for care are adequately met. Please consult your family attorney or visit the American Bar Association’s Lawyer Referral Directory (see Appendix A).
For families struggling to care for a loved one with psychiatric illness, working with insurance companies can be confusing and overwhelming. Many questions arise about services that are covered, the length of time for which they are covered, coverage for outpatient versus inpatient care, plan limits, the use of in-network providers, and more. It is important to talk with your insurance company about benefits and potential costs that your loved one may incur.
Outpatient providers, coverage, and co-payments vary by insurance plan. Please check with your insurance company and/or the treatment provider directly to determine whether he or she is an approved provider. Most insurance companies maintain a list of these providers on their website; you may also contact the company directly and ask them to furnish it to you.
When calling for more information about coverage for inpatient care, you may be told by an insurance company that your loved one has coverage for 60 days of “medically necessary” treatment. People often assume this means that a hospital stay will be approved for 60 days. In reality, however, after a patient is admitted, most insurance companies review the patient’s progress every two to three days and make a determination of whether more time at a particular level of care will be authorized because it is deemed to be medically necessary.
Patients and their families need to find a treatment provider who has the necessary experience and education to conduct effective treatment. Patients and their families may also need to advocate for themselves regarding insurance coverage and appeal insurance company decisions. Most insurance companies have specific grievance processes that are described in their informational material should this step be necessary. These processes do not tend to be adversarial.
Additional information can be found in this printable PDF of the Guide to Transitioning from Inpatient Care including:
These materials were written with valuable contributions from McLean’s Patient and Family Advisory Council. If you would like to offer feedback or suggestions for this guide, please contact us at firstname.lastname@example.org.