Support And Family Education: Session Seven - Rights and responsibilities of patients, family members, and professionals

Session Seven - Rights and responsibilities
of patients, family members, and professionals

Materials Needed:
Handout L: "Rights and Responsibilities of Patients, Family Members, and Professionals"
Handout M: "My Perception of My Family Member's Current Functioning"
Handout N: "Log of Mental Health Treatment"

Patients, family members, and professionals all have certain rights and responsibilities.
The roles and extent of involvement of these three groups of people vary depending upon the level of functioning of the patient at the time. Patients and family members often feel overwhelmed by "the system" and unsure how to navigate the sometimes confusing channels. Consequently, knowledge of these rights can be very helpful.
Patients and family members also have numerous important responsibilities. Although these tasks may not seem like "responsibilities," they are choices individuals can make that maximize the wellness of the patient and family unit.
- Distribute Handout L: "Rights and Responsibilities of Patients, Family Members, and Professionals"
Rights and responsibilities of patients (parts adapted from Bisbee, 1991)
1. Rights of patients
  1. To be protected from abuse (from family members and professionals).
    - As patients are often in somewhat vulnerable positions, safeguards are important to ensure their protection and humane treatment.
  2. Not to be blamed for the mental illness.
  3. To be educated about the illness and treatment options.
    - Seeking out information about the symptoms and treatment options can be therapeutic. Patients may wish to solicit information in a variety of formats (e.g., discussions with providers, videos, pamphlets) and on repeated occasions.
  4. To be given timely and appropriate treatment in a safe, therapeutic environment.
  5. To participate (to the fullest extent possible) in treatment planning and decision-making. To be able to consent to or refuse treatment.
    - As patients often feel somewhat out of control of their lives, professionals should actively empower patients to be involved in health care decisions.
  6. To communicate with family members, friends, clergy and attorneys.
  7. To have their treatment information and medical records kept confidential (except in specific situations in which the information needs to be released).
  8. To have copies of treatment and medical records if requested (unless deemed inappropriate at the time by the professional).
  Discussion Questions:
  - Would anyone wish to share an experience in which your loved one stood up for his/her rights?
  - Or you stood up for the patient's rights?
2. Responsibilities of patients
  1. To learn about and accept the illness.
  2. To obtain appropriate treatment.
  3. To cooperate with the professionals' directions (e.g., medication compliance, attending and participating in other treatment options).
    1. Due to a variety of reasons (see Session #10 on "What to do when your help is turned away"), patients may fail to uphold these responsibilities, resulting in frustration for the families and professionals. Discussing the reasons for these choices may increase the caregiver's understanding and the patient's acceptance of the responsibilities.
    2. For example, a patient may dislike the decreased libido side effect of an anti-depressant so may just discontinue the medication. If this reason could be addressed openly, perhaps another medication could be used that would not have this adverse side effect.
Rights and responsibilities of family members (parts adapted from Bisbee, 1991)
1. Rights of family members
  1. To be protected from abuse (from patients and professionals).
  2. Not to be blamed for the mental illness.
    - Family members often assume too much responsibility for having "caused" the patient's mental illness. Professionals need to combat this misperception by explaining the multiple causes of the illness.
  3. To be educated about the illness and treatment options.
  4. To access information on advocacy and support (such as through the S.A.F.E. Program, the local chapter of the National Alliance for the Mentally Ill, etc.).
  5. To visit the patient if he/she is in the hospital (during defined visiting hours).
  6. To call the police or sheriff at any time if your loved one is an imminent danger to him/herself or to others. The professionals will make the decision whether or not the patient can be detained against his/her will, but family members can always make the report when concerned about the patient's safety.
  Discussion Question:
  - Can you think of other rights you as family members have?
2. Responsibilities of family members
  1. To learn about and accept the illness.
  2. To share your experiences and observations of the patient with the professionals.
    1. The information that you as family members have about the patient's functioning is very valuable to the providers. Although you may struggle with access to the doctors and may experience frustration regarding issues of confidentiality, professionals can benefit from your observations of your loved one. You obviously have much more contact with the patient than the providers do, and you can notice red flags and communicate this information earlier.
    2. Be brief and concise. Avoid overwhelming the provider with details or long stories.
    3. Distribute Handout M: "My Perception of My Family Member's Current Functioning." Sometimes both patients and caregivers forget what they want to tell or ask the doctor, and they may feel rushed in the brief appointments. This form is a potential tool to aid in communicating with the provider. If organizing your concerns before the appointment is helpful, you can work with your loved one to review his/her functioning in several domains. If you cannot attend the appointment, you may choose to send this form to the doctor before your loved one's appointment.
    4. As episodes of mental illness can be cyclical and patients may take many different medications over the course of the illness, the psychiatric history can become extensive and complicated. Patients are encouraged to keep records of their treatment experiences and medication regime. However, this task can be overwhelming, and patients may be unable to keep an accurate log. Therefore, you may choose to keep a log of the symptoms you observe, the efficacy and side effects of various medications, his/her hospitalizations, etc. (Carter & Golant, 1999).
      
      Distribute Handout N: "Log of Mental Health Treatment" as a sample log. Discuss how participants may wish to use this form to help their loved one.
    5. If the patient agrees, you may wish to have him/her sign a release of information document such that the provider can speak openly with you about your family member. If the patient refuses, you can still convey your concerns to the doctors (e.g., calling them on the telephone; leaving a message; writing a letter). However, the doctor cannot tell you any specific information about your loved one without a signed release.
  3. To encourage your family member to comply with the professionals' treatment plans.
    - Your loved ones likely value your opinion (even if they don't show it), so your encouragement to follow doctors' orders can be very influential. Patients can sense if you don't believe in the treatment plan, so educate yourself so you can support the doctors' recommendations.
  4. To take good care of your own physical and emotional health.
    - Remember information reviewed in Session #6 on self-care.
  5. To seek out advocacy and support groups for yourself.
  6. To monitor your loved one for signs of dangerousness (to themselves or others).
Rights and responsibilities of professionals (parts adapted from Bisbee, 1991)
- Mental health professionals also have important rights and responsibilities.
1. Rights of professionals
  1. To be protected from abuse (from patients and family members).
  2. To not have a cure or a "quick fix."
    - As much as patients, caregivers and professionals would like an easy cure for mental illness, all parties must struggle with the existence of these disorders. Our science has made significant advances in understanding the causes of mental illnesses and discovering new treatments. Research and learning will continue to improve the quality of life for individuals with a mental illness.
  3. To be given timely and honest information about the patient's functioning.
    1. When patients and/or caregivers intentionally withhold important information from professionals, the ability to effectively help the patient is severely impaired. Only when doctors are given honest information about patients are they able to use their skills effectively.
    2. Example: Your 28-year old son has been struggling with depression for four years. The psychiatrist has been trying him on several different anti-depressants and group therapies, but none seem to be helping. You know that your son is drinking 6-8 beers per night (and more on weekends) but he tells the psychiatrist that he just drinks "socially." What could you do? [talk to your son about your concerns; tell the psychiatrist, etc.]
  4. To make honest mistakes.
    - Although doctors are often seen as "super-human," they, too, make honest mistakes, poor decisions, and have their own "bad days." None of these factors, however, should excuse poor patient care.
  5. To have a personal life that patients and family members respect, while always providing back-up coverage (colleague, emergency room, etc.).
    1. Although patients may want their provider to be available to them 24 hours per day, professionals have the right to boundaries on their personal lives. Some movies (e.g., What About Bob? with Bill Murray and Richard Dreyfuss) portray patients' failures to respect these boundaries (e.g., going to the doctor's home, following the doctor on vacation, befriending family members).
2. Responsibilities of professionals
  1. To do no harm.
    - Sadly, the media often portrays mental health professionals doing significant emotional damage to their patients (e.g., being friends with patients; sexualizing the therapeutic relationships; taking advantage of vulnerable patients, etc.). However, all mental health professions have strict codes of ethics (e.g., American Psychological Association's Ethical Principles of Psychologists and Code of Conduct) that mandate appropriate behavior with patients. Stringent consequences are enforced for violations of the standards (e.g., lose license to practice; probationary status).
  2. To provide patients with an accurate diagnosis of their condition (as well as information about prognosis).
  3. To prescribe appropriate medications (if indicated) and educate patients about possible side effects (this is most commonly done by psychiatrists).
  4. To protect the confidentiality of the patient and family members, as mandated by state law.
  5. To stay informed of current research on treatment options (new medications or therapies) and use this information to guide their clinical practice.
    - Given the rapid pace at which progress is being made in the understanding and treatment of mental illness, providers need to keep current (via research, workshops, reading journals, etc.)
  6. To treat all patients and family members with respect.
  7. To acknowledge and foster strengths in the patient and family (Spaniol, Zipple & FitzGerald, 1984).
  8. To direct patients and family members to opportunities for education, support, and advocacy.
Treatment is most effective when patients, family members, and professionals work together to understand, monitor, and treat the patients.
What can you do if you believe that your family member's rights are being violated?
1. Talk to the provider. Perhaps a misunderstanding has occurred, and a frank discussion with the professionals would allow for clarification of the situation.
2. Consider requesting a change of provider.
3. Request an appointment with the management of the agency or medical center.
4. Ask for a listing of patient rights at the facility.
5. Contact your local National Alliance for the Mentally Ill (NAMI) affiliate for support and guidance. One of the major missions of NAMI is advocacy work to improve services for patients with mental illness.
6. Learn the laws in your state.