Caregiving from family and friends is an invaluable help, particularly for older individuals who wish to continue living in their homes. Fortunately, many Mainers support each other by assisting with the multitude of daily living tasks. According to Valuing the Invaluable: 2015 Update by the AARP Public Policy Institute, 178,000 Mainers each provide an average of 165 hours of care annually, which AARP calculates to have an economic value of $2,220,000. As Maine’s population continues to age, the amount of informal caregiving will likely increase.
Maine’s Act to Allow a Patient to Designate a Caregiver in the Patient’s Medical Record, which went into effect on October 15, 2015, will provide additional support to these lay caregivers when someone is admitted to a hospital.[i] This law is being referred to as the CARE Act, based on its original name: the Caregiver Advise, Record, Enable Act. When an individual is admitted to or held overnight for observation in a hospital, the CARE Act requires the hospital to provide at least one opportunity for the individual to designate a lay caregiver and provide the caregiver’s contact information, which must then be documented in the individual’s records. Then, if the individual or the individual’s agent, guardian, or surrogate[ii] consents, the hospital must notify the caregiver when the individual will be discharged or transferred to another facility. The hospital must also provide the caregiver with aftercare instructions for the individual in a “culturally competent manner” with a “meaningful opportunity” to ask questions. If the individual has an Advance Health Care Directive and chooses to identify a person other than the person who is serving as the agent under the Directive, this action does not bar the agent under the Directive from also receiving information.[iii]
The ability to identify a lay caregiver does not replace the need for an individual to have an Advance Health Care Directive, which has a much broader scope. The CARE Act only applies to the limited situation of a person who is admitted to or held for observation status in a hospital, whereas an Advance Health Care Directive allows the agent under the Directive to help the principal (the person who signed the document) in any medical context. Advance Health Care Directives do not only provide for a release of medical information to the agent; they can also guide the agent on issues such as end-of-life care, organ donation, and funeral and burial arrangements as well as nominate the agent as a guardian if a guardian is ever needed. (The ability of an agent to access financial information and to make financial decisions on behalf of a principal is accomplished through a Financial Power of Attorney, which is another vital estate planning document for any adult.)
Hospitals have an incentive to comply with the CARE Act both because it supports improved patient care and because new Medicare rules are more closely measuring readmission rates, which should be decreased by this improved aftercare planning. If an identified caregiver is not reasonably available when the patient is available for discharge, the hospital is not required to delay discharge. Additionally, the statute does not impose any independent legal obligation upon the identified caregiver to provide aftercare to the patient.
The CARE Act passed unanimously in the Maine House and Senate after a veto override. It has been enacted in at least eighteen states. On the federal level, the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act would require the Secretary of Health and Human Services, with stakeholders, to develop and implement a national policy to support family caregivers. The RAISE Act was introduced in the Senate by Senator Collins; it passed in the Senate this December and has been referred to a House committee.
[i] This law does not apply to private mental health hospitals.
[ii] Under Maine law, when an adult or emancipated minor patient lacks capacity, the patient has a terminal condition or is in a persistent vegetative state, and either no agent is named in an Advance Health Care Directive and no guardian has been appointed by a Court or the agent or guardian is not reasonably available, then a “surrogate” may make very limited health care decisions for the patient. 18-A M.R.S. § 5-805. The person, or group of people, who has statutory priority to serve as a surrogate may not be who the patient would prefer to act on her behalf and the surrogate’s decision-making authority and access to information is limited, all of which further underscores the need for every adult to have an Advance Health Care Directive.
[iii] 22 M.R.S. § 1711‑G(2)-(7).