Some revolutionary changes in society occur without fanfare or even much comment. One that has occurred in the last few generations is that people’s life spans have increased almost two fold. Consider: the average person in 1750 would die at the age of fifty and be considered elderly in the mid forties. Go back to 1400 and the average lifespan was forty. In 1200 the average life span was thirty five. (Do not concentrate on the royal personages-the average peasant lived in a hut with his or her animals, traveled less than twenty miles in their entire lifetimes, had children at fourteen, and died fifteen years later. That comprised 98% of the population. Almost everyone died at a time considered still “young” by our culture!)
Put simply, the average American today lives more than twice as long as the average person four hundred years ago. The average American lives more than ten years more than his or her grandparents. That is one reason Social Security is in such trouble-benefits were supposed to last one to three years since most people died at sixty five or six. Now the average person lives well into their seventies with women living on the average close to eighty.
One client put it well-we have been given a gift of ten to twenty years that no humans had for the past thirty thousand years. It is a miracle brought about by hygiene, discovery of antibiotics and reduction of such destructive practices as smoking and driving under the influence of drugs.
That’s the good news. The bad news is that our society has been slow to recognize the change and adjust its facilities to cope with an increasing number of people who have different needs than their own grandparents. The elderly are now healthy and active in their seventies and eighties and often live well into their nineties, needing increasing care. We don’t know what to do with the elderly. Even the elderly do not know what to do with the elderly. The concept of retiring at the age of sixty five, living a few years on the golf course, and being dead by sixty eight is no longer relevant. What the new life style and structure will be is in transition.
And our society has a difficult time even discussing the issue. Unlike many societies in which aging and death is considered a part of life, Americans seem uncomfortable dealing with both, concentrating on the vigor of youth more than the challenges…and opportunities…that the existence of the elderly provide. See our article The Compatibility of Law and Justice for a study of that issue.
But as the elderly become an increasingly vigorous public voice due to healthier life styles allowing them to retain the ability to be politically active, and as the costs of medical care for the elderly are forced upon the public consciousness, an entirely new area of political and legal consideration has arisen, often called Elder Law.
Some of it is directed at avoiding Elder Abuse, a matter discussed in our article on that issue. Some of it relates to ensuring that decisions required to be made for the incompetent elderly can be made without the large expense of Guardians or Conservators. See our article on Durable Powers of Attorney and Living Wills.
And much of the law pertains to end of life decisions and living conditions of the elderly as they find themselves having an increasingly difficult time living in the family home.
This is not just a problem for the elderly. Their children and relatives, siblings and friends all must confront the often emotional issues surrounding the life style changes that all of us must consider.
This article shall discuss that most difficult decision of living and dying arrangements for the elderly, both the law and the practicalities.
“Assisted Living,” Nursing Homes and the Elderly-the Law:
The courts have been clear on certain rights all adults, including elderly adults, maintain. All adults have the right to make their own decisions, unless they have voluntarily delegated it to someone else or the court has so delegated, provided they have the mental capacity to do so; to be treated with patience and compassion and to receive protective services such as health care, medications, personal assistance and privacy in a non-restrictive environment; to socialize with whom and how they choose; to make their own financial decisions, even if someone is assisting them with bill paying; the right to choose their physician etc. The elder also has the right to confidentiality
The United States Department of Health and Human Services through its Health Care Finance Administration enforces nursing home regulations. Both in 1980 and 1987, the standards to be met by nursing facilities were updated with the regulations imposed under the Omnibus Budget Reconciliation Act of 1987 (“OMBRA 87”).
OBRA 87: The Omnibus Budget Reconciliation Act of 1987 or OBRA 87 requires that the facility provide each patient with care that will enable the patient “to attain or maintain the highest practicable physical, mental and psychosocial well-being”. The main purpose behind enacting this legislation is to maintain the quality of life of nursing home residents and makes it the duty of the state to ensure that state licensing and federal standards are maintained. States are also required to maintain investigatory units and Ombudsman units, and to fund and staff them adequately. Subsequently, OBRA 87 has been updated with OBRA 90.
The concept of “assisted living” as a unique program of care or service for elderly/minimally impaired persons has been slow, in the eyes of legislators and practitioners, to distinguish itself from other existing forms of services. The distinction becomes important for purposes of funding and financial assistance from state and federal entities. But more importantly, the distinction becomes important in the eyes of the residents and their families.
Assisted living is often described as a statement of philosophy which differentiates itself from other forms of “residential care” by focusing on a model of living that promotes independence, autonomy, privacy, and dignity for residents in a facility. In other words, the concept relates more to an approach toward care rather than to the actual care received. Moreover, families struggling with the less appealing option of placing their loved ones in traditional “nursing homes” are often soothed by the option of knowing that assisted living strives to maintain the current level of independence enjoyed by residents, but with supervision or support when needed.
In general, the term “assisted living” is used transitionally with that of “board and care” services. However, assisted living statutes and regulations usually contain language referring to “independence,” “autonomy,” “privacy,” etc. Assisted living is also different from other residential programs (e.g., homes for the aged, board and care facilities, residential care facilities, etc.) in that it is more likely to involve apartment-like settings and (if living space is to be shared) choice of apartment mates. Finally, assisted living facility staff will often make arrangements for external entities rather than internal staff members to provide nursing care or health related services to residents. This arrangement makes such services more likely to be reimbursable as “home health care services” under Medicaid or other funding initiatives.
But when assisted living residents need nursing care, the distinction between “assisted living” and other forms of residential care becomes nebulous. In many states, assisted living facilities may admit or retain residents who meet “level of care” criteria used for admission to nursing facilities. At the same time, many nursing homes divide their beds into wards or designated areas, so as to accommodate varying levels of resident needs. They may have a skilled care area, an intermediate care area, and an “assisted living” area all within the same facility. Generally, such an arrangement is mutually beneficial to facility and patient. It keeps occupancy rates high at the facility and allows residents to move internally from one area of care to another without the need to move to another facility altogether.
Often the elderly dislike radical change in their living arrangements and their ability to remain within a single facility is welcomed. This writer, however, has heard one elderly resident describe the move to the next level of care as, “entering the door to the other world.” She claimed all the residents would watch their friends go to the next level of care and know, “…what that means.” She then smiled and said it is just part of life.
Semantics aside, assisted living generally refers to a residential living arrangement in which residential amenities are combined with “as needed” assistance with “activities of daily living” (ADLs) (eating, dressing, bathing, ambulating, toileting, etc.) and personal care. Although only about half of all states actually use the term “assisted living” in their regulations or statutes, a vast majority of states have either reviewed existing legislation or enacted new laws to address the growing demand for assisted living facilities.
Applicable Federal and State Law
All assisted living facilities accepting state or federal funds must be licensed. For those accepting federal funds, most of the applicable regulations and rules are incorporated into those applicable to nursing homes in general. They include:
- The Nursing Home Reform Act is absorbed in a larger Act known as the Omnibus Budget Reconciliation Act of 1987 (OBRA 1987). The Act imposes more than just minimum standards; it requires that a facility provide each patient with a level of care that enables him or her “to attain or maintain the highest practicable physical, mental and psychosocial wellbeing.” Importantly, OBRA 87 makes each state responsible for establishing, monitoring, and enforcing state licensing and federal standards. Under the Act, states must fund, staff, and maintain investigatory and Ombudsman units as well.
- The Patient Self Determination Act of 1990 is absorbed in the Omnibus Budget Reconciliation Act of 1990 (OBRA 1990). Applicable to more than just nursing homes, it essentially mandates that facilities provide written information to patients regarding their rights under state law to participate in decisions concerning their medical care. This includes the right to execute advance directives (durable powers of attorney in California) and the right to accept or reject medical or surgical treatments. The facilities must also provide a written policy statement regarding implementation of these rights, and must document in each patient’s record whether or not an advance directive has been executed.
- States are required to enact bills of rights for nursing home residents. Generally, the same rights attach to residents in assisted living facilities as those in nursing homes. Most state declarations of rights parallel the federal ones, codified at 42 USC 1395i-3(a) to (h); and 1396r(a) to (h) (1988 supplement to the U.S.C.).
- For California, the law is found at Cal. Code of Reg, Title 22; Division 6, Chapter 8 which governs “residential care facilities for the elderly (RCFE),” of which the state has approximately 6,000 facilities. In 1995, special legislation was passed to permit RCFEs serving persons with Alzheimer’s Disease to develop secure perimeters (exterior doors or perimeter fences, delayed egress doors, etc.) There is a requirement of one toilet/sink per six residents. Minimum staffing requirements for facilities with fewer than 100 residents is one person. Medicaid coverage is not available though the law is in flux.
Nursing Home Abuse.
With some 17,000 nursing homes serving 1.6 million individuals, it is expected that standards will vary, even among homes ostensibly adhering to the same standards. Unfortunately, in some nursing homes, abuse exists. Quite often, the problems stems from facilities that are overcrowded, or locations with staff shortages or minimally trained staff. Under no circumstances is abuse excusable or legal.
The greatest danger of nursing home abuse is that its victims are often either too frightened or too disoriented to report it, or even to tell friends or family.
Those with family members in a nursing home should be aware of what to look for when trying to determine whether abuse exists:
- The patient appears fearful or agitated, depressed or withdrawn.
- The patient is isolated with no justification. Justification given is contradictory.
- The staff is rude or makes humiliating or derogatory comments to patients or to each other within the patient’s hearing.
- Patients are making complaints.
- Patients’ rooms or common areas are not kept clean by staff.
- Common areas are unsanitary.
- Patients appear unkempt or dirty.
- Patients have bed sores or other untreated medical conditions.
- Patients have unexplained wounds, cuts, scrapes, sprains, or broken bones.
- Patients experience sudden unexplained weight loss.
- Patients are restrained without explanation as to why.
- Patient’s personal property is missing.
- Money is missing from patient’s accounts.
- Staff restricts or refuses visitors.
- Patient makes sudden changes in a will or other financial documents.
If you find abuse in a nursing home, you should report it at once. The U.S. Administration on Aging has a National Center on Elder Abuse web site (www.elderabusecenter.org) that links to individual state agencies. You can also call the Elder Care Locator at 1-800-677-1116. In an extreme emergency (if a patient’s life is in danger, for example), dialing 911 may be the best idea.
Alternatives to Nursing Homes
Throughout most of history and in most nations in the world today, out of home care for the elderly is the exception. Most families in most locales expect the elderly to be cared for by family members and multi generational homes are the norm.
While there are real advantages to having family home care, it is not always ideal. Many younger families find the interaction with an often difficult parent or grandparent difficult at times. Many elderly feel they are not treated with respect by the younger family, are bored or ignored at home, and may feel isolated from their own friends and colleagues, especially if the younger family lives outside the neighborhood that the elder once occupied. It can and does work but it is not as easy as the movies would suggest.
What most elders wish is to simply remain living in their own home, among their own possessions, surrounded by their old neighborhood, and the rest of the family is often content with that arrangement until the elder’s health or mental condition may require some outside help and care. The arrival of that condition is seldom in “black and white,” but more often a degradation of the health condition of the elder over time, often not noticed by the family or even the elder. Quite often a single event…an illness, a fall, a traffic accident…suddenly brings to the family’s attention the need for additional help for the elder and that is when tensions can arise.
The usual progression then is some limited home care for the elder, increasing in time commitment over the years, to the point where the elder needs twenty four hour a day care. The progression is from an outside helper without particular medical training a few hours a day to the need for a helper with some medical training all the time. This progression can take years, sometimes even a decade, and the expense of such care increases remarkably as the hours and expertise increases.
At some point most families face the decision of moving the parent in with other family members; having family members move in with the elder; or finding some source of funding to provide the outside care needed. Twenty four hour a day care is extremely expensive. Not only must that care be maintained, but such events as illness of the caregivers or their own need for vacations and time away requires the use of a professional provider of services which again increases the cost. Full time care at home is usually more expensive than providing the funds for assisted living or a nursing home. Once the elder requires regular medical observation, most families realize that the elder’s home must be sold to pay the costs of assisted living or a nursing home and this can be a traumatic event for the elder.
In reality, assisted living facilities have become pleasant places quite often and many elders are surprised at the luxury available. Studies have shown that most elders actually recover old skills and become happier in the right facility and with interaction with other elders who are capable of social intercourse.
Finding the right place, affording the right place, and convincing the elder that it is a good move are the challenges faced and often require several years of preparation.
Assisted living facilities are no longer “God’s waiting room,” which is what one client once called the average nursing home. But to find the right place requires access to experts, a commitment of time and energy for the search, and the close involvement of the elder.
And, in most cases, it should only be undertaken when remaining at home is not to the elder’s liking or simply not practical for medical reasons.
A very wise elder client once told this writer that her last and best gift to her children was providing for her own living arrangements when she was too old to live in her beloved home. I still have the card she wrote to me when moving into her new facility. “It is not my first choice. My first choice is to be fifty years old again, live at home and travel with my husband. But those times are past and my choices are to be here…which is not so bad…or to be a worry to my children and myself, going up and down my steep stairs. Those are the choices, the past is past. And making the best of my choices is now my goal in life. I have nothing to complain about.”
End of Life Decisions
With the number of senior citizens in the United States rapidly increasing, preparing for and making end-of-life decisions has become increasingly more important for those of advanced age and society as a whole. Highlighting the importance of this issue has been the continuing religious, ethical and medical debates in the areas of organ donation, “brain death” and life support withdrawal.
Today, a consensus has emerged in American law and ethics that patients have an unlimited right to refuse any unwanted medical treatment, even if necessary for life itself. There is no right to demand affirmative acts to end life. See our article on Euthanasia.
Regarding patients who are unable to make decisions for themselves, a view that respects the role of a surrogate for the patient in decision-making prevails in the United States. However, it is also recognized that the authority of the surrogate in this regard may need to be limited.
The Supreme Court of the United States in Cruzan v. Missouri Dept. of Health, categorically stated that a state may permit termination of life support systems, including nutrition and hydration, if the incapacitated individual’s intentions are shown by clear and convincing evidence. In the course of the judgment, the court also pointed out that under the U. S. Constitution, a person has the right to refuse medical treatment. This right to refuse treatment is a protected liberty interest. It was also observed that incompetent patients retain a right to refuse treatment, which right can be exercised by a surrogate decision maker and in California that is specified in a durable power of attorney or living will.
A study conducted on 135 patients for the purpose of understanding the decision-making process near the end of life revealed that a majority of the patients (76%) had thought about end-of-life issues whereas only 36% had discussed the decision with their doctor in the hospital. With competent patients, 10% preferred to leave all decisions to the doctor, 9% preferred that the doctor make the final decision after considering their opinion, 32% preferred that the doctor share responsibility with them to make the decision, 24% of the patients preferred to make the final decision after considering the doctor’s opinion, 16% preferred to make the treatment decision alone, and 10% did not answer.
The study also found that the physicians were not able to accurately predict the patient’s preferred role. The study, therefore, concluded that seriously ill hospitalized patients desire to discuss end-of-life issues with their physicians but their preferred role in decision making is variable and difficult to predict.
A “Living Will” is a document by which a person can direct medical personnel to withhold or withdraw life-sustaining procedures in case the condition is terminal and death is imminent. A living will is however much narrower than a health care power of attorney because it only applies to decisions relating to the end of life whereas the durable power of attorney for health care covers end of life decisions as well as other medical treatment decisions.
A “DNR” (do not resuscitate) is a document that spells out the conditions under which a person prefers not to be resuscitated by CPR (cardio pulmonary resuscitation), so that if the person’s heart stops, he or she will not be revived.
Unlike a durable power of attorney for medical care, one does not need to appoint someone to be the agent or surrogate in a living will. The medical personnel will carry out the instructions directly. The person creating a living will, however, must be at least 18 years of age and competent to create a valid legal document. See our articles on the subjects.
As part of the end of life decision, a person may also choose to donate his or her body parts or organs after death. Each state has different laws about how a person’s wish to donate may be recorded.
Each state in the United States has different guidelines regarding end of life decisions and also regarding what kind of documents are legally recognized and binding. For example, New York State does not recognize living wills as legal documents, although in some circumstances they will be recognized as indications of the patient’s wishes. There are some states that require advance directives be notarized, whereas others do not. A person living in more than one state, like those who live north in the summer and south in the winter, will need to be sure that appropriate documents are written and signed for each location.
It is also important to date the documents developed so that if changes are made later, the most current wishes will be enforced. California recognizes both Living Wills and Durable Powers of Attorney for Health Care.
Conclusion:
Another elderly client once made a comment that was memorable. She commented that, “This dying stuff is not so hard. You just drift away sooner or later. It’s the end part of living that is difficult at times. But even that is not so bad…we just forget how difficult being young was. This isn’t so bad, really, if one just relaxes a bit and realizes that as the universe of options shrink, one must value more the options that remain.”
She had her bad days, of course, and towards the end some days of pain. But I happen to think that she died as well as she lived…and perhaps that is the greatest goal we all must have sooner or later.