Assisted living communities and nursing homes provide care for a large number of older adults, short or long term. What guarantees exist that the care provided will be ethical, dignified, respectful and of a quality to ensure good care? Most assisted living communities operate under “minimum standard of care” requirements.
Family caregivers searching for the appropriate assisted living community for a loved one struggle with guilt and uncertainty. Guilt because they can’t provide more care for a loved one and are forced to choose a care community. Uncertainty because of the growing number of available assisted living communities, varied service offerings and the difficulty making the right choice.
I’ve worked in the aging and healthcare industry for the past 15 years. Assisted living and skilled nursing communities are needed and beneficial. Many of the staff working in the communities are dedicated and good care is provided. I’ve also worked with communities where due to staff turnover and other circumstances the care provided was sub-standard. Family caregivers, because of a lack of education and understanding of the system, often become frustrated because they fail to receive expected care results for loved ones. The staff of care communities at times fail to fully explain available services and service and staff limitations.
Few will argue that the healthcare industry is challenged. Professional caregivers expected to care for our loved ones earn on average $10 per hour; most have no health insurance and few receive more than the minimum amount of training. Language barriers exist for those for whom English is a second language. Turnover is extremely high affecting the quality of care. Profits are strained, especially in communities accepting Medicaid. Budgets for training are thin and sometimes non-existent.
All this being said, this week I had the privilege of attending the 5th Annual Colorado Bar Association’s Elderlaw Retreat. This morning I presented about the challenges of care in assisted living communities. While my presentation may have been somewhat controversial, it should also be noted that I am a member of the Colorado Assisted Living Association and have participated in their conferences and provided training to attendees. I support ongoing education for all involved in the care of older adults and disabled individuals. I am the chairperson of a local healthcare ethics committee also offering education and support to professional caregivers and am involved in many professional groups and organizations.
In my daily work as an advocate, I am involved with situations that complicate care for clients for whom I am responsible for in the role of guardian or medical power of attorney. The following presents a realistic situation of several issues that occur in some, not all care communities. As The Care Navigator, I advocate for higher standards of care and believe that it is possible to raise care levels with the support of the healthcare community and the recognition that it is our duty to improve current standards.
Below is a short list of challenges that exist in the assisted living industry:
1) “If you can’t get your loved one to do something – we’re certainly not going to get them to do it either”. Many communiites sell family caregivers on the idea of assistance with bathing, dressing, meals medication administration and activities. The reality is that if a loved one does not wish to participate in one or all of these, the care staff cannot make (force) a resident to do anything. This refusal of participation is considered a “patient right” and is extremely frustrating to family caregivers.
There are some limitations. The patient’s rights guidelines fail to mention the responsibility and ability of medical power attorney and guardian to make care decisions for a loved one. This is confusing to most, if not all care staff, as individuals with legal authority have the ability to override a patient’s right. For example a loved one allergic to chocolate vomits and is repeatedly sent to the emergency room at great financial expense and bodily harm. Care community staff would argue the patient’s right to consume chocolate. The legally responsible party would argue health risks and expenses from repeated hosiptalizations that their loved one is unable to comprehend. Thus a right to eat chocolate can be denied by a legally responsible party if the consequences of doing so result in physical and financial harm.
2) Assisted living communities accept residents well beyond the care they are able to provide. Empty beds equal lost profit. Many communities are accepting individuals whose care borderlines the care provided in a skilled nursing community. While it is true that an assisted living environment is more appealing, the risks of care needs not being met for individuals who require a high level of care are too great. Need proof, google the recent expose on Emeritus Assisted Living Communities called “Life and Death in Assisted Living“. While the events described happen in many communities it is also true that the staff at any one individual community and the leadership of the Executive Director dictate care levels that may be exceptional.
3) “We pay people to put you here even if – there’s a better community option for you.” Assisted living communities pay high fees, usually equal to one month’s rent, to referral services. If one of the free referral services are used, versus an independent consultant paid by the client, the best community may not be recommended.
Several years ago, Michael Berens, a Seattle Times reporter, led an expose called Seniors for Sale about misleading and under the table practices in the elder care industry including free referral services. The state of Washington and several states have passed protective legislation requiring full disclosure of fees, requirements of insurance and other protections in the aging and eldercare industry as older adults and family caregivers are extremely vulnerable. As of today, Colorado has no such legislation.
4) Professional caregivers become emotionally involved and will take sides against family. In situations where only half of the story is evident and a loved one may be diagnosed with dementia, a brain injury or a personality disorder it’s difficult for professional care staff to understand that there is usually another side to the story that is reported. I have personally experienced professional caregiving staff become enmeshed in family situations, support situations of triangulation, pit the resident against family members and particpate in other practices that damaged family relationships. This occurs due to lack of training and experience on the part of professional caregivers who become emotionally attached to the residents for whom they provide care.
5) Don’t ask, don’t tell. If family caregivers fail to ask the right questions potentialy adverse events occur. Community staff exist to provide care not necessarily to educate or consult with family about care issues. It’s always the questions that caregivers fail to ask that result in significant issues. Family caregivers must become more knowledgeable about the systems within which they place family members and not rely on care staff to be the solution to all questions.
Advocates are available to assist in this area where a lack of asking the right questions or not having sufficient knowledge can be dangerous. This is especially necessary in situations where parents or older adults are unable to manage their own care. In these situations it is truly buyer beware.
6) “We’re not federally regulated – you too can become an assisted living administrator with 30 hours of training and a little bit of experience.” Almost anyone can open an assisted living community. Large, mid-size communities and small personal care homes continue to be built to serve the growing number of baby boomers aging everyday. Again, good communities with high standards exist in equal proportion to communities with minimum standards and poor care.
7) Medicare Compare – Many families rely on this website to choose a nursing home. The information can be dated. Half of the information is “self-rated”. The main fault of this program is that it requires families and individuals to file complaints with the state health depatment in order for these complaints to show for a particular community. Most family carevivers, fearful of filing a complaint because they feel the care of their loved one will be at risk, refuse to file complaints. Thus many communities with sub-standard care are never identified.
These are realistic concerns that may be translated across all healthcare industries of service, mine included. However standards must be set and education must be a continuing requirement if we are to be able to change concerns about a healthcare system that places older adults at risk versus providing quality care.