By Pamela D. Wilson, The Care Navigator, CSA, CG, MS, BS/BA
I frequently receive calls of disappointment from family members about the care situations of loved ones — who are hospitalized or at a rehabilitation community for a short term stay or a loved one who is living in a retirement community or at home — receiving what appears to family to be a marginal or an unacceptable level of care from professional care providers. The concerns expressed have a similar theme with many family caregivers describing different expectations of care.
While many professional caregivers that include hospitals, rehabilitation communities, care communities, home health care providers, in home caregivers and medical offices are well aware of the inside challenges of the industry, this information is rarely shared with families. Who wants to report bad news about the realities of healthcare and the care system in general?
Good care still exists, however the ongoing challenges of the system continue to stretch providers who offer good care. The reality is that receiving good care has an associated cost and in some situations requires super human effort and expertise on the part of a family caregiver or a care advocate. Most individuals rely on insurance to pay for care needs. Relying only on insurance to pay for costs of care no longer guarantees the ability to receive good care. The shock that Medicare does not pay for long term care is often viewed as bad news by many families.
Trends in the direct care industry that challenge the ability to receive good care include: low wages, high staff turnover, few skills or educational requirements, lack of on the job training, low levels of supervision and low reimbursements from government programs like Medicare and Medicaid. Without significant changes, for example — consumers being willing to pay higher taxes or contribute a greater portion of income to pay for healthcare — these trends will not improve.
While “culture change and person centered care” is a governmental goal for healthcare, this is an idea that has been attempted since the 1980’s and an idea that struggles to succeed. In addition to the challenges identified above, available time to provide care is another significant factor resulting in less than ideal care. When care staff has 10 individuals to care for in an 8 hour shift something or someone has to give. Someone receives less time or rushed assistance resulting in dissatisfaction or poor care. Tasks remain uncompleted and the next shift is burdened with additional responsibilities.
Patients notice that staff are rushed and feel compassionate by almost apologizing for needing assistance. I often hear, “I know you are busy but could I have help with …” A rushed caregiver responds yes and returns an hour later apologizing that he or she was delayed by another resident needing immediate care.
Another example of differing levels of expectation is when family caregivers expect assisted living communities to provide a higher level of care than is possible or practical. Assisted living communities are unable to provide “medical care and oversight” that is beneficial to many older adults. For many individuals, there arrives a time when the provision of greater care oversight is beneficial in preventing rapid declines in health.
While hospitals, skilled nursing communities and rehabilitation centers are regulated by Federal guidelines, assisted living communities are governed by states and have few regulations. This results in a wide range of promised services and care levels offered by assisted living communities. This is not to say that assisted living communities do not provide a valuable service – they do – however it is important for families not to assume that falls may be prevented, that skin conditions and bed sores will not occur or that health conditions will not decline further simply because a loved one lives in an assisted living community.
What happens when your loved one with high medical needs like daily fluctuations in health, frequent urinary tract infections, behaviors due to a diagnosis of dementia or Alzheimer’s requires extra time and attention that staff is unable to provide? The responsibility of care falls on family members in addition to accepting the realities of a situation — meaning a potential need to make changes to support beneficial care.
I speak to many adult children who refuse to speak to parents about care options for fear of angering a parent. Other adult children shrug their shoulders knowing that suggestions presented to a parent will result in refusals or denials. Many times it is the way in which information is presented and the potential consequences of taking or not taking action that have the ability to change a stance of refusal or denial. This information presented by adult children is less successful than having a non-involved advocate present the information. While there is no sure fire method to convincing parents to accept care or to make changes, presenting options and setting caregiver boundaries is important.
Just as being aware of options is important, investigation of the reasons for changes or events is also important rather than accepting what may appear to be a standard explanation. There are situations where changes in health may not be fully investigated by family members and assumed to be normal, for example a parent who is losing weight. Whether in the hospital, in a rehabilitation center or in assisted living, some individuals require extra time and attention at meal time to assist with feeding, to cut up foods into small portions or to allow extra time for “slow eaters” to finish a meal before plates are removed. Improper nutrition leads to weight loss and a rapid spiral of other serious health conditions.
This responsibility to participate in and to monitor a loved one’s care is no different when a loved one is in the hospital or in a nursing home where the staff provides care but may fail to inform you of a change in health condition or be unable to take the time to explain a diagnosis and prognosis. The majority of direct care staff does not have the time to serve as hand holders or consultants to family caregivers and many lack the level of expertise to serve in this role.
Care staff is often rushed to ensure that residents receive care meaning that a change they may notice in a patient may never be reported. Physicians and nurses observe daily care, provide treatment and notice changes in condition; these activities become routine in the course of a day rather than viewed as important or critical information to be reported to family members. Families visiting a loved one on Monday may receive a call the next morning that their father or a mother passed away with no prior warning by care staff that health condition had changed.
The role of a care navigator and advocate is to support individuals and family caregivers in situations of uncertainty where care may be less than ideal or decisions must be made without families feeling they have sufficient information. Care advocates serve as a “bridge” to investigate and report information to families and to smooth communication between professional care providers and family members. Advocates are also able to problem solve situations and offer solutions not always evident serving in a consultative manner to ensure families receive beneficial and needed information about care, options and available services.
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©2014 Pamela D. Wilson, All Rights Reserved.