Revisions: 279

  1. Preamble 
    1. MASAC is aware of multiple reports of persons with bleeding disorders being denied access to residential mental health and/or substance use disorder treatment facilities, despite being appropriate for admission. 
    2. Academic literature has suggested that these reports of mental health denials are not atypical. Reviews of the exclusionary criteria of inpatient psychiatric facilities in the Houston, Texas area found that none of the facilities would accept either adult or pediatric patients requiring use of any intravenous (IV) therapy.[i],[ii]
    3. Every person, assuming they are medically stable and otherwise appropriate for admission, should have equal access to residential/inpatient mental health and substance use disorder facilities, regardless of their inherited bleeding disorder diagnosis, the treatments/ medications they use, or the geographic location in which they live. The presence of an underlying bleeding disorder alone does not make a patient medically unfit or medically unstable and should not preclude them from admission to a mental health or a substance use disorder treatment facility.
    4. The role of a comprehensive hemophilia treatment center (HTC) is to provide holistic, individualized care and to support and advocate for persons with bleeding disorders throughout their lifespan. This includes ensuring a bleeding disorder and associated treatments are not barriers to a person’s mental health or substance use disorder care, and that persons with bleeding disorders continue to receive the standard of care for their bleeding disorder while in a mental health or a substance use disorder treatment facility. 
    5. In May 2024, the Department of Health and Human Services released a new rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities.[iii] The rule clarifies that Section 504 of the Rehabilitation Act of 1973 requires medical providers that receive federal financial assistance, including mental health and substance use treatment providers, to conduct an individualized inquiry to determine whether a person is appropriate for admission to a facility rather than making a categorical exclusion based on a diagnosis, such as a bleeding disorder. The rule states, “Individualized assessment will generally be required when evaluating whether a disability renders an individual not qualified for treatment or whether another legitimate nondiscriminatory reason exists to deny a particular treatment to a person with a disability. Categorical judgments based on the presence of a specific diagnosis that do not entail an individualized assessment may violate § 84.56… However, recipients are nonetheless permitted to consider the standard of care and applicable medical evidence informing their judgments of whether treatment is necessary or appropriate for individual patients. In the vast majority of circumstances, where medically indicated care depends on the specific clinical circumstances of the patient seeking treatment, recipients must engage in an individualized inquiry when determining eligibility for treatment.”[iv] 
    6. This document provides recommendations to guide mental health and/or substance use disorder facilities in conducting unbiased individualized assessments of people with bleeding disorders and determining whether individuals are appropriate for admission to a mental health and/or a substance use disorder treatment facility from a bleeding disorders perspective. It also provides recommendations to the bleeding disorder treatment team to support people with bleeding disorders in gaining access to appropriate mental health and/or a substance use disorder treatment facilities.
  2. Recommendation on access to inpatient and residential mental health and/or substance use disorder treatment facilities for persons with bleeding disorders. Provided a person with a bleeding disorder is medically stable (see Section IV for definition of stability from a bleeding disorder perspective) and can maintain their established treatment protocol, having a bleeding disorder should not preclude a person from receiving access to quality mental health and/or substance use disorder treatment in a residential/inpatient setting. 
  3. Background on bleeding disorders.
    1. Inheritable bleeding disorders are lifelong, genetic conditions with no known cure. 
    2. Persons with bleeding disorders who are stable and well-maintained on their medication can live in the community and do not require any direct medical supervision related to their condition. They can lead full, active, and independent lives. 
    3. A bleeding disorder diagnosis generally does not restrict an individual’s activities of daily living. It may restrict individuals from participating in contact or collision sports/activities that may result in significant bodily injury.
    4. Persons with bleeding disorders managed through prophylaxis 
      1. Some (e.g., some individuals with hemophilia A or B, severe von Willebrand disease, and other rare bleeding disorders) use bleeding disorder medication prophylactically to prevent bleeding. 
      2. Depending on the type of medication utilized, medications are administered either as an intravenous push or as a subcutaneous injection. Typically, intravenous push infusions take less than 10 minutes. Medications delivered subcutaneously can be administered in under one minute.
      3. For this subset of persons with bleeding disorders, prophylactic treatment is recommended to ensure stability from a bleeding disorder perspective.
      4. Persons with bleeding disorders managed through prophylaxis may also use additional bleeding disorder medication to treat bleeds in the event of trauma, injury, or medical procedure.  
    5. Persons with bleeding disorders managed episodically 
      1. Some persons with bleeding disorders (e.g., individuals with moderate or mild hemophilia A or B, mild von Willebrand disease, or another bleeding disorder), may not require regular bleeding disorder medication to maintain stability from a bleeding disorder perspective and typically only use medication in response to trauma, which can include both major and minor injuries, or in advance of an invasive medical procedure. 
  4. Medical stability from a bleeding disorder perspective.
    1. Definition of bleeding disorder stability.
      1. Bleeding disorder stability is determined by the bleeding disorder treatment team.
      2. Bleeding disorder stability is defined as adherence to an established treatment regimen and/or minimal to no spontaneous bleeding, and no active major bleeding.
        1. In the event that the bleeding disorder treatment team recommends prophylaxis but the person with a bleeding disorder chooses on-demand treatment instead, the individual may be considered stable if they have the knowledge, access, and ability to successfully treat bleeding events on-demand.
        2. Persons who are unstable from a bleeding disorders perspective are not appropriate for admission to a mental health or a substance use disorder treatment facility. This would include persons experiencing a major, active bleeding event. Major, active bleeding events are life- or limb-threatening (e.g., gastrointestinal bleeding, intracranial hemorrhage), and require treatment in an inpatient medical setting.
        3. Persons with bleeding disorders with minor bleeds who have been cleared by their bleeding disorder treatment team and their mental health provider to manage their bleeding disorder in the outpatient/community setting, are stable and eligible, from a bleeding disorder perspective, for admission to an inpatient/residential mental health and/or substance use disorder treatment facility. 
    2. Importance of maintaining an established treatment protocol for bleeding disorder stability. 
      1. MASAC is aware of situations where persons with bleeding disorders have been asked to discontinue their prophylactic treatment as a prerequisite to admission to mental health and/or substance use disorder treatment facilities. 
      2. Asking a person to discontinue their bleeding disorder treatment in order to secure mental health or substance use disorder treatment is a violation of the standard of care.
      3. Maintaining the person’s established treatment protocol is essential to ensuring bleeding disorder stability and significantly reduces the likelihood that mental health or substance use disorder treatment will be interrupted by bleeding events.  
  5. Distinguishing medical complexity from a stable, rare, genetic medical condition.
    1. Bleeding disorders are rare, genetic, chronic conditions with which many mental health and substance use disorder treatment providers may not be familiar. This may lead clinicians to assume that the daily management of the condition is complex. However, if a person with a bleeding disorder is stable (as defined in section IV) and has an established treatment protocol (individualized treatment plan) from a hematologist, the daily, ongoing management of the condition is straightforward and not complex. 
    2. Stable persons with bleeding disorders typically manage their condition independently in accordance with their established treatment protocol in the community. They do not require hospitalization, frequent medical visits, remote monitoring, or medical supervision.  
    3. If the person with a bleeding disorder experiences a medical event unrelated to their bleeding disorder during a stay at an inpatient/residential treatment facility, the facility should treat the person with a bleeding disorder in accordance with the usual standard of care.
  6. Recommendations to facilitate medical stability in a mental health or substance use disorder treatment facility. These recommendations will facilitate the person with a bleeding disorder’s medical stability and enable the person with a bleeding disorder to complete the required mental health and/or substance use disorder treatment.
    1. Individualized inquiry. We recommend that, consistent with the requirements of Section 504 of the Rehabilitation Act of 1973 (Section 504), mental health and substance use disorder facilities conduct an individualized assessment of the prospective client’s medical needs prior to admission. In the case of an individual with a bleeding disorder, it is essential for the facility to consult with the individual’s bleeding disorder treatment team before making an admissions determination. 
    2. Individualized care plan. We strongly recommend that, as a part of the admissions process, the bleeding disorders treatment team advises the mental health and/or substance use disorder facility regarding the person’s individualized care plan. This care plan should include a link to the package insert of any prescribed product, education about the types of injuries/bleeding episodes that warrant treatment, and an emergency action plan. We recommend that the emergency action plan include emergency contact information for the bleeding disorders care team and include recommendations for the response to:
      1. the use of physical holds or restraints, 
      2. the use of emergency intramuscular injections,
      3. self-injury or accidental injury, and
      4. refusal to self-administer or receive bleeding disorder medication.
    3. Reasonable accommodations. 
      1. Persons with bleeding disorders managed through prophylaxis will require the following accommodations: 
        1. Access to prescribed bleeding disorder medication,
        2. Secure, climate-controlled storage that may include refrigeration for bleeding disorder medication and supplies,
        3. Time during the scheduled medication days to receive bleeding disorder medication,
        4. Permission to administer (self-infuse or inject) the bleeding disorder medication with staff to monitor or a provider to administer the bleeding disorder medication (staff or external),
        5. Private space in which to administer the bleeding disorder medication (e.g., a medication room or a private office)
      2. Persons with bleeding disorders managed episodically may also require some of the accommodations described in section VI(C)1 so that they can receive their medication in the event of an injury or other bleeding event.
    4. Infusions/injections. Some persons with bleeding disorders may have the ability to self-infuse/inject their bleeding disorder medication, while other persons with bleeding disorders will require assistance to administer the infusion/injection.
      1. Self-infusion/ injection. Considerations for self-infusion/injection for persons with bleeding disorders with co-occurring mental health and/or substance use disorder conditions:
        1. For a person with a bleeding disorder to receive their bleeding disorder medication through self-infusion/injection, the facility will need to provide staff oversight to ensure that the bleeding disorder medication is infused/injected per bleeding disorder treatment team instructions and the supplies are not used for purposes other than those for which they are intended.
        2. We recommend that the determination of whether the person with a bleeding disorder who can normally independently self-infuse/inject is able to safely do so in the context of acute mental health and/or substance use disorder concerns, be made by the bleeding disorder treatment team in cooperation with the mental health and/or substance use disorder treatment provider and the person with a bleeding disorder. 
        3. In making this assessment the mental health and/or substance use disorder treatment provider may consider the person with a bleeding disorder’s mental state (psychosis, delusions, agitation, etc.); and,
          1. whether the person with a bleeding disorder has expressed intent to utilize bleeding disorder supplies to harm self or others;
          2. whether the person with a bleeding disorder has demonstrated safe behaviors;
          3. desire and willingness to do the infusion; and
          4. Whether the person with a bleeding disorder and a substance use disorder has or could be triggered by using needles for an infusion/injection.  
        4. In making this assessment the bleeding disorder treatment team may consider the person with a bleeding disorder’s ability to: 
          1. read the number of units/milligrams in the packages, 
          2. check expiration dates, 
          3. perform hand hygiene, 
          4. mix medication,
          5. check for particulate matter and discoloration of the medicine,
          6. clean the site,
          7. remove air from the syringe and/or tubing,
          8. access the vein or subcutaneous site, 
          9. infuse,
          10. appropriately dispose of sharps/trash, and 
          11. document the injection/infusion.

      2. Assisted infusion/injection. If the person with a bleeding disorder requires assistance to administer the infusion/injection, we recommend that the bleeding disorder treatment team, the mental health and/or substance use disorder treatment provider, the person with a bleeding disorder, and the facility work together to identify the appropriate individual to administer the medication. This plan may evolve during the person with a bleeding disorder’s stay at the facility. An appropriate individual may include:
        1. A family member or legal guardian approved by the bleeding disorder treatment team to administer an infusion/injection,
        2. A home infusion nurse, visiting nurse or contracted staff trained to administer infusions or injections,
        3. A member of the facility’s staff trained to administer infusions or injections.
    5. Considerations for use of mental health medications that have potential impacts on coagulation for persons with bleeding disorders. Some psychiatric medications have potential impacts on coagulation, including but not limited to those described in Appendix I.  In the context of an inpatient or residential treatment facility admission, we recommend that people with bleeding disorders be prescribed the most appropriate products for their mental health condition(s), with individualized consideration of both psychiatric and hematologic risks and benefits. This decision should include a consultation and discussion of any relevant monitoring with the bleeding disorders treatment team prior to use when possible. 
    6. Considerations for crisis intervention techniques for persons with bleeding disorders.
      1. Physical holds and restraints:
        1. The use of physical holds and restraints has a potential risk of bleeding-related injuries. Despite these potential risks, we recommend that behavioral health facilities use their standard crisis intervention techniques with people with bleeding disorders per behavioral health team and institutional policy. 
        2. After the use of physical holds or restraints, we strongly recommend that a physical assessment occurs within one hour of initiation of restraint (even if the restraint has been discontinued) and that this assessment includes a consultation with the bleeding disorders treatment team and the implementation of the emergency action plan if necessary.
        3. The consultation with the bleeding disorder treatment team is important and strongly recommended even if there is no evidence of external bleeding. 
      2. Emergency intramuscular injections. The use of intramuscular injections has the potential risk of intramuscular bleeding and hematoma formation at the site. Despite these potential risks, we recommend that the behavioral health facilities use their standard crisis intervention techniques with people with bleeding disorders per behavioral health team and institutional policy. 
      3. Self-injury or other accidental injury. We recommend that facility staff contact the person’s bleeding disorder treatment team to discuss whether further assessment and/or treatment may be appropriate. Consultation with the bleeding disorder treatment team is important and strongly recommended even if there is no evidence of external bleeding.
    7. Electroconvulsive therapy (ECT). Electroconvulsive therapy has a potential risk of intracranial hemorrhage.[v],[vi] We are aware of two documented case reports of successful use of ECT in persons with schizophrenia and severe hemophilia A[vii],[viii] as well as the safety of use among individuals receiving anti-coagulant therapy.[ix],[x] To mitigate the risk of intracranial bleeding in persons with bleeding disorders, we recommend that the mental health team consult and discuss the bleeding disorder treatment plan with the bleeding disorder treatment team in advance of administering ECT.  We further recommend that the person with a bleeding disorder’s treatments provide hemostatic protection sufficient to prevent intracranial bleeding or hemorrhage (similar to a treatment plan for a major surgical procedure), in advance of each ECT session.
  7. Recommendations for bleeding disorder treatment teams to increase access to inpatient and residential mental health and/or substance use disorder treatment facilities for persons with bleeding disorders.
    1. We recommend that HTCs provide information necessary to help a mental health and/or substance use disorder treatment facility conduct an individualized assessment under Section 504 and determine whether a person with a bleeding disorder is appropriate for treatment. 
    2. We recommend that bleeding disorder treatment teams support persons with bleeding disorders in accessing mental health and/or substance use disorder treatment facilities by educating facilities about bleeding disorders and collaborating with facility staff to ensure that the person with a bleeding disorder is able to maintain their established bleeding disorder treatment protocol while at the facility. 
    3. We recommend that providers who care for persons with bleeding disorders establish relationships with residential/inpatient mental health and substance use disorder treatment facilities in their area prior to need.
    4. If the co-occurring mental health and/or substance use disorder treatment condition makes regular infusions or injections challenging, we recommend that the bleeding disorder treatment team consider recommending that the person with a bleeding disorder switch to a longer-acting hemostatic product.


 

Endnotes


 

  1. [i] Tucci, V., Liu, J., Matorin, A., Shah, A., & Moukaddam, N. (2017). Like the eye of the tiger: Inpatient psychiatric facility exclusionary criteria and its “knockout” of the emergency psychiatric patient. Journal of Emergencies, Trauma, and Shock, 10(4), 189. https://doi.org/10.4103/jets.jets_126_16 (Accessed August 9, 2024).

    [ii] Tucci V, Moukaddam N, Matorin A, Shah A, Onigu-Otite E, Santillanes G. Inpatient psychiatric facility exclusionary criteria and the emergency pediatric psychiatric patient. Int J Acad Med 2017; 3:44-52. https://journals.lww.com/ijam/fulltext/2017/03010/inpatient_psychiatric_facility_exclusionary.7.aspx(Accessed August 9, 2024).

    [iii] Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance. U.S. Department of Health and Human Services. (Final rule.) Federal Register: 89:91 (May 9, 2024). p. 40066. https://www.govinfo.gov/content/pkg/FR-2024-05-09/pdf/2024-09237.pdf (Accessed August 9, 2024).

    [iv] Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance. U.S. Department of Health and Human Services. (Final rule.) Federal Register: 89:91 (May 9, 2024). p. 40096. https://www.govinfo.gov/content/pkg/FR-2024-05-09/pdf/2024-09237.pdf (Accessed August 9, 2024).

    [v]  Elizabeth W.J. Carlson, Howard Weeks, William T. Couldwell, M. Yashar S. Kalani, Intraparenchymal hemorrhage after electroconvulsive therapy, Interdisciplinary Neurosurgery, Volume 9, 2017, Pages 89-91, ISSN 2214-7519, https://doi.org/10.1016/j.inat.2017.07.012. (Accessed August 9, 2024). 

    [vi] Saha D, Bisui B, Thakurta RG, Ghoshmaulik S, Singh OP. Chronic subdural hematoma following electro convulsive therapy. Indian J Psychol Med. 2012 Apr;34(2):181-3. doi: 10.4103/0253-7176.101799. PMID: 23162198; PMCID: PMC3498785.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3498785/(Accessed August 9, 2024).

    [vii] Glaub T, Telek B, Boda Z, Szabo S, Krall G, Rak K. Successful electroconvulsive treatment of a schizophrenic patient suffering from severe haemophilia A. Thromb Haemost. 1996;75(6):978. https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0038-1650408. (Accessed August 9, 2024).

    [viii] Saito N, Shioda K, Nisijima K, Kobayashi T, Kato S. Second case report of successful electroconvulsive therapy for a patient with schizophrenia and severe hemophilia A. Neuropsychiatr Dis Treat. 2014 May 16;10:865-7. doi: 10.2147/NDT.S61816. PMID: 24876778; PMCID: PMC4037299. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4037299/(Accessed August 9, 2024).

    [ix] Centanni NR, Craig WY, Whitesell DL, Zemrak WR, Nichols SD. Safety of ECT in patients receiving an oral anticoagulant. Ment Health Clin. 2021 Jul 16;11(4):254-258. doi: 10.9740/mhc.2021.07.254. PMID: 34316422; PMCID: PMC8287866. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8287866/(Accessed August 9, 2024).

    [x] Mehta V, Mueller PS, Gonzalez-Arriaza HL, Pankratz VS, Rummans TA. Safety of electroconvulsive therapy in patients receiving long-term warfarin therapy. Mayo Clin Proc. 2004;79(11):1396–1401.https://www.sciencedirect.com/science/article/abs/pii/S0025619611621873 (Accessed August 9, 2024).

MASAC Documents
MASAC Document 289 - Recommendations on Increasing Access to Mental Health and Substance Use Disorder Treatment Facilities and Programs for Persons with Bleeding Disorders