In this section:
It can be frustrating working within the modern healthcare system. Especially in the middle of a crisis situation, when everyone is stressed and frightened, it can seem like no one is paying attention to your or your loved one's needs. However, family members play a vital role in the treatment of loved ones with psychiatric disorders. Not only do people with these diseases need lots of support to help them to the most complete recovery possible, relatives who are informed and involved can vastly improve adherance to medications and long-term treatment plans, all of which are essential to avoiding future relapses.
The following is a quote from a study of 213 schizophrenia subjects, which examined factors predicting medication compliance after hospital discharge:
"The availability of family to help patients has been consistently shown to be associated with improved medication compliance...patients whose families refused to participate in treatment were at high risk for stopping their medications. In previous research, a strong correlation has been found between family members' and patients' attitudes toward antipsychotic medications" (Source: Psychiatr Serv 51:216-222, February 2000)
Since the involvement of family members can be so important to the outcome of someone with schizophrenia or bipolar disorder, we hope that the information below will assist you in working with doctors and hospital staff on behalf of your loved one. If you have something to add out of your own experience, please email us at firstname.lastname@example.org
Tips for communicating your requests/concerns to hospital staff (excerpted from the schizophrenia.com FAQ guide)
1) Make sure the doctor/psychiatrist is aware of all the symptoms - if they don't have all the information, they might be led to an incorrect diagnosis or treatment plan. Keeping a symptom journal is the most thorough and accurate way to do this. A good doctor should value the input of family members who are intimately knowledgable about their relative's particular case.
2) Become familiar with the treating psychiatrist, the nurses at the hospital, the social workers, and anyone else directly involved with your relative's care. These are the people who should have your loved one's best interests and welfare at heart, and the people you should go to if you have questions, concerns, or complaints.
3) Be assertive - you have every right to know what is going on, and have things explained to you in a way you understand - but be polite and flexible also. Too many times hospital staff get impatient with "problem" family members who they see as rude or demanding. It's vital to have a good working relationship with the treatment team.
3) Be polite but persistant in your quest to get information and answers. Hospital staff members are inevitably busy, but they are there to give the best care possible to consumers and their family. Keep your conversations and requests short and to the point, to maximize the time they have for you. If they are unable to see you, leave a message with your name, your relative's name, and your number, and keep the phone line clear so they can reach you at the first opportunity. Consider putting your question or request in a letter, and delivering it to their office. Remember to write down things you appreciate - special considerations or care that you or your relative recieved from a care provider - as well as concerns.
More articles on communicating with hospital staff:
Confidentiality Issues - avoiding future difficulties
Patient confidentiality laws exist for many good and important reasons - it protects the trust between the physican and the patient, it allows the patient to speak freely to his/her healthcare provider about personal and sometimes embarrassing topics, and it protects the patient against potential stigma from employers, insurance companies, school systems, and the general public.
However, confidentiality in cases of patients with severe brain diseases can become problematic, and potentially detrimental. It is a fact that 40-50% of people with schizophrenia or bipolar disorder have only partial or no awareness of their illness - this aspect of brain diseases is a medical condition called anosognosia. Therefore, it is often essential that family members and/or primary caretakers are kept "in the loop", informed of diagnosis, treatments, and long-term management plans. Family members can immensely improve outcome and recovery by helping their relative stick to treatments.
Confidentiality laws in the U.S. vary from state to state. A hospital or health care employee may tell you that they are prohibited by law from discussing any information regarding your relative's treatment with you. Although this may be the case in some states, other states may only bar the release of actual medical records while still allowing the discussion of general information regarding diagnosis and treatment plans (Source: NAMI-VT). This is also the case in some other countries - for example, British Columbia allows the sharing of treatment information with family members for the purposes of continuity of care (Source: British Columbia Schizophrenia Society). Similarly, Section 120A of the Mental Health Act 1986 of Australia has a provision allowing release of information to families without consumer consent, "if the information is reasonably required for ongoing care and the person who receives the information will be involved in providing the care." Clearly, legislation such as this allows the provider more flexibility than one might assume.
The following are suggestions for how to stay informed and involved in your relative's treatment:
- Arm yourself with information before all else. Don't take the word of a hospital staff member or a doctor who says they are barred by confidentiality laws from releasing any information. Don't get rude or nasty, but do double-check the exact wording of the law in your state or country. The person you talked to may not be aware exactly what information can and cannot be released, and under what circumstances. Study data has shown that "both consumers and mental health care providers interpret confidentiality laws conservatively" (TAC article from Catalyst Newsletter, Spring/Summer 2005 Issue). This means that a health care provider is more likely to air on the side of caution with regard to confidentiality, especially when they themselves are not entirely sure of what the law allows. You can help this situation by becoming informed on what is legally permissible in your area, and how you can argue for an exemption.
- Communicate openly about your desire to be involved from the beginning. Such discussions should involve the mental health care consumer, the health care provider, and any immediate family members who may be involved in treatment. A study regarding the procedures of information release to families of psychiatric patients indicated that many consumers are never asked by their doctor if they are willing to release information to family members - thus, the issue is never brought up or settled ahead of time. Later, when the family member is seeking information during a crisis, he/she is told that no information can be released (Source: "Releasing Information to Families of Persons With Severe Mental Illness: A Survey of NAMI Members" Psychiatr Serv 51:1006-1011, August 2000. Perhaps this situation could be avoided if the topic was discussed openly from the beginning. Clearly, the best time to have this conversation is when the ill relative is in a calm, lucid state of mind - not during or directly after a crisis situation. The same study also showed that consumers were more likely to have a positive attitude about involving family members if the health care provider specifically encouraged them to do so. Hopefully you and your relative's doctor can be allies rather than adversaries, as you both work towards the goal of providing your loved one the best care possible.
- If applicable, talk with your relative about signing a HIPAA (Health Insurance Portability and Accountability Act) compliancy form ahead of time. HIPAA is a national standard governing the transfer of health record information (implemented in 2003). According to the SAMHSA website on HIPAA, it is applicable to "three distinct covered entities: health plans, Healthcare clearinghouses, and Healthcare providers who transmit health information electronically in connection with standardized transactions." Therefore, it is likely that your healthcare provider or plan is compliant with HIPAA. The HIPAA compliancy form allows the patient to designate a third party to whom it is all right to release information - in many cases, this can be an immediate family member or caregiver.
Information protected by the HIPAA privacy rule: "all individually
identifiable health information held or transmitted by a covered entity or its business
associate, in any form or media, whether electronic, paper, or oral." (source: http://www.hhs.gov/ocr/privacysummary.pdf)
Elements of the HIPAA Privacy Rule that May Help Family and Friends (Source: Understanding and navigating the HIPPA privacy rule; TAC Catalyst Newsletter, Spring/Summer 2005):
- An individual has the right to review and obtain a copy of his/her Protected Health Information (PHI), with the exception of psychotherapy notes, information for legal proceedings, or medical records from correctional facilities (note: in some states, a mentally ill individual may not have this right). This means that a family member might be able to convince their loved one to request a copy of their own records, and share it with them. If this is possible in your situation, it may be faster than attempting to gain clearance yourself.
- Jails and correctional facilities can request medical records for the purpose of giving health care to an incarcerated individual. If your loved one has been arrested, the jail has the right to request the transfer of medical records, bypassing HIPAA.
- Personal representatives - appointed by court order and authorized to make medical decisions on behalf of another person - have the right to access that individuals medical records. If you can gain power of attorney or guardianship over your loved one, you will have clearance to be informed about their treatment.
- In an emergency situation where a patient is incapacitated, a health care provider has leave to share medical records if they are deemed to be in the best interest of the individual. This is non-specific language, and clearly left to the jurisdiction of the doctor or provider. However, it may be something to bring up in what could be considered an emergency situation. The source article for this information suggested that Alzheimer's disease, which results in severe mental incapacitation, could be considered an emergency situation.
- 29 U.S. states do not have their own legal governance regarding medical record release - these states are bound by HIPAA.
- 21 U.S. states have added their own legal statutes, in addition to those of HIPAA
- for further information, see either the source article (cited above) or http://www.hhs.gov/ocr/privacysummary.pdf (Gov document, 2003)
- Submit your request for information disclosure in writing to the doctor, the doctor's supervisor, and on up the chain of command. Clearly and firmly state your familiarity with state law on medical record release, and indicate why you believe it does not apply in your case. See the following articles for examples of how to write a letter making such a request:
- See a list of questions that family members can ask psychiatrists that will not conflict with confidentiality laws in most states (Source: NAMI-SF)