Advance directives, power of attorney, conservatorship, and guardianship relate to limiting the autonomy of older persons. Most of us have a great deal of autonomy, especially in decision-making. Limiting autonomy negatively affects the quality of life of the individual and should be considered seriously before being invoked.
Autonomy is independence—acting on one’s own without control by others. It is very much a societal value and varies sharply among societies. Autonomy has high perceived value in the United States but not in some subcultures and not for every member of some subcultures. In the U.S. laws, zoning regulations, societal norms, and other boundaries limit independence.
Autonomy is limited by level of competency, which is impossible to define broadly. Competency involves the ability to make decisions. It can be defined narrowly by area or by absence, and is defined by the process not the product. For example, a woman living alone in her own home with a documented history of falls may say, “Yes, I fall, and I will probably continue to do so, but I accept that risk because I want to stay in this setting, alone.” Another woman in the same situation may say, “I never fell and I won’t fall.” The product is the same; both are saying they want to remain at home. But while the first woman acknowledges facts, risk, and outcome, the second one is making a statement clearly contradicted by facts, denying the risk, and ignoring the outcome. Her competence could be questioned although she might simply later tell an investigator or judge, “I knew all of that—I just didn’t want to discuss it with them.”
A competent person possesses and retains values, can communicate and understand information, and can reason and deliberate about choices. A person with cognitive deficits may be competent in one functional area and incompetent in another. A man may be unable to understand his mail or pay his bills but be perfectly capable of continuing his routines at home, from bathing and hygiene to cooking and cleaning. There would be no reason to limit his autonomy beyond financial restraints. Most of the time in our society, the concept of elder rights promotes freedom over safety: a person can choose to live in harm’s way if she is competent to make that choice, does not place others at undue risk, and does not break the law. Courts, not family members, decide on exceptions to this rule.
On Tuesday, May 8th, 2012, Cedar Sinai Park hosted Kari Berit and her lecture “The Unexpected Caregiver: How to Keep Mom and Dad Active, Safe, and Independent.” Here’s the footage from the event, divided into three parts (interruptions were provided by audience activity).
Higher needs usually require admission to a structured environment, from foster care to assisted living to a nursing facility. The most frequent reason cited for requiring interventions and higher levels of care is the decline of cognitive function.
Pre-morbid personality is not necessarily a predictor of personality during the course of any dementia. Some impaired persons are quiet, placid, suggestible, and cooperative throughout the course of the disease. If they have an Alzheimer’s type dementia they may remain at home until the disease itself stiffens their bodies to point where a smaller caregiver cannot move or dress them. Others deny their impairments, become paranoid and combative, refuse medications, bathing, dressing and all other assistance and quickly escalate to the behaviors noted above that lead to placement. For some, that occurs in the first months of the diagnosis; for others it can take many years.
The three reasons most cited by exhausted caregivers as the precipitating factors for placement are:
combative or assaultive behavior, and
inappropriate behavior related to toileting.
Wandering out of the house at all times combined with day/night confusion means that the caregiver does not sleep or the impaired person is not safe (persons with cognitive impairment retain amazing ability to open locked doors or windows or to disable alarms).
Assaultive behavior endangers the caregiver and often brings forceful intervention from the rest of the family or the physician.
Urination throughout the home combined with smearing and hiding fecal matter becomes intolerable when it combines with other behaviors and caregiver exhaustion.
Changes in the level of care also depend on health factors.
When an older person retains cognitive and social functions, simple mechanical interventions can help maintain independent living at home. The variables that provide for care and safety at home include:
a healthy spouse or other adult in the home
a strong, informal support system
the personality and course of the decline of the impaired person.
An older person with cognitive deficits may live at home safely for some time. Her needs can be addressed by live-in assistance from family members or paid caregivers, but such interventions can be stressful for families and expensive or unreliable using paid caregivers. Some medical conditions require a higher level of care than can usually be supported at home without formal, professional intervention. A family member, paid companion, or aide can assist with homemaking, bathing, shopping, and bill-paying. Most of this assistance involves only a few hours a day. Day-services programs can provide a respite for families.
The amount of time the caregiver spends with the person and the nature and timing of the tasks performed may suggest the need for a higher level of care. A person who is unable to toilet herself or manage her own incontinence care will need someone with her at all times to maintain skin safety and hygiene, as will a person who is unable to access many medications throughout the day and night. A medically-fragile person with many attacks of pain and weakness will require constant companionship, if not care, to avoid the multiple 911 calls which often signal to the community the need for a higher level of care. Many persons who are medically fragile without cognitive deficits are impaired by a level of anxiety that affects their social functioning and requires presence of an aide or companion.
The level of care determination first depends on the setting and on urgency. Almost no time may be allowed from the moment a hospital discharge is ordered to when the person must leave the hospital or pay privately. The initial placement decision may not be the final one—another care level change may be appropriate later. In every structured setting (hospital, nursing facility, assisted living, residential and foster care), facility staff, medical providers, and insurance case managers have more input than in an informal setting.
If a decision is made from home and the person is safe or supervised, the process can be more planned and relaxed. The resident and family select the input they need and make decisions based on family history, culture, finances, geography, and convenience. External providers may provide information for the decision, but they do not make the decision itself.
Facilities decide to request level of care changes based on two criteria:
the care needs of the resident
the caregiving ability of the facility
If a resident in an assisted living facility requires the services of a licensed nurse several times per day as an ongoing care need and the facility does not have a licensed nurse on staff, the facility will ask the resident to make a level of care change. The once-a-day requirement may be met by a home-health nurse, albeit not for a prolonged period.
Most facilities prefer for a person to “age in place”, but may determine that staffing levels could not accommodate the transfer issues of a 300 lb. person vs. a 110 lb. person. If a resident or family member can be taught to provide a service, such as testing for blood sugars, in the absence of a licensed nurse, the person may remain at a lower level of care.
The initial decision by a facility to admit a resident is momentous for the family because facilities do not easily ask for changes or request that a resident move. Once a person is admitted, she will remain as long as she and the family desire within the limits of care possible. Thus, one may see an applicant for admission denied while someone in the same or more advanced condition is allowed to remain. This is a critical issue to remember when a senior says they want to remain at home as long as possible: she may be committing to admission to a higher level of care, perhaps a nursing facility, than if she had made an earlier planned and preventive move, e.g. to assisted living.
Finally, when a facility requests or suggests a level of care change and the resident or family disagrees, an appeal process is an option. If, for example, the insurance case manager, physician, or the facility staff change the skilled status in a nursing facility, they offer a formal appeal at the same time. However, at the assisted, residential, or foster care level, the process is informal and the decision probably follows several meetings or phone calls. If no agreement is reached, an appeal is possible to a manager, board, or ombudsman.
Above all, do not expect pre-existing problems to be resolved in a care setting. Personality issues, mental health problems and substance abuse will not improve in a care facility. They may be exacerbated by the pressure of new demands and surroundings and may be even less tolerated by staff and other residents than they were by family.
Although the availability and regulation of adult foster care facilities differs in each state, foster homes are generally privately-owned facilities in single-family dwellings. A caregiver sees to the custodial needs of up to five persons. Most such facilities do not provide skilled care and are unable to provide for the night needs of residents who need toileting. However, some specialized homes do provide such care and some are owned by licensed nurses who provide a higher level of care. In most states, homes are licensed and overseen by state regulators who visit and have the power to close the homes, just as in the other previously noted facilities.
Home Health Care
Home health care is a specialized service that follows a hospitalization or a skilled nursing admission and responds to an acute illness, surgical procedure, or injury. The costs are often covered by health insurance. It is provided only with a physician’s order and by a licensed home-health agency. Providers are nurses, licensed social workers, rehabilitation therapists, and certified nursing aides who are usually designated as bath aides. The care is rarely provided for more than a limited period of time over weeks and for no more than one hour at a time from each discipline. The services cannot provide supervision of a patient or respite for a caregiver.
Cedar Sinai Park’s affiliate organization Sinai Family Home Services provides home health care services to seniors in the Portland, Oregon, metropolitan area, under the leadership of Jack Honey.
Home Care is provided by agencies and individuals who may or may not have any kind of license or oversight. It ranges from companionship to assistance with dressing; and from one or two weekly visits to full-time overnight care by two persons for transferring and toileting. It can be performed by a family member or friend, for reimbursement, room and board, or without remuneration.
Hospice is a concept and not necessarily a place. While there are hospice facilities located in larger cities, most hospice care is provided in nursing facilities, foster homes, and private homes. Hospice staff include the same licensed professionals providing home health and the programs are often colocated in the same agency. The hospice focus is on comfort care, not on treatment or curing a disease or condition. Spiritual support, counseling, and some volunteer services are also provided. Hospice services are covered by Medicare and are sometimes covered by other insurance; they require a physician’s order which will include a prognosis, orders for care and medication, and agreement to follow the care. Outside of a hospice facility, the person must have their custodial care needs met by someone other than hospice staff, who will provide only specialized, intermittent care.
Cedar Sinai Park collaborates with area agencies to provide hospice care for residents when needed.