When planning ahead for the future, most people willingly envision and plan for positive events like marriage, parenthood, retirement, etc. Events that are not often planned for, however, are the life-altering events that affect a person’s ability to make decisions for him/herself. And while it is understandable why such issues are not willingly discussed, it is important to know that it could lead to days, weeks or months of emotional distress, financial strain and/or family conflict. In order to avoid the potential of such distress, it important to at least be aware of the term advanced directives and what legal documents exist in order to reduce the potential for conflict.
Advanced directives are documents created for the purpose of planning ahead and ensuring you and your family’s needs are properly arranged for. Basic documents like a Health care proxy, a Living Will and Power of Attorney are documents that can ensure you and your loved one’s wishes are honored.
Health Care Proxy also referred to as Medical Power of Attorney is a legal document whereby a person is appointed to make medical decisions for another individual. For example, if your loved one suffers a stroke and becomes disoriented, a health care proxy would give you the legal ability to make medical decisions about his/her care.
Living Will is ideal for individuals who want to have their wishes in writing either because they do not have anyone to designate as proxy or because they hold strong convictions about the level of care they do/do not want.
Power of Attorney gives an appointed person the ability to handle another person’s finances. A durable power of attorney, specifically, will allow the chosen individual to handle a person’s finances even after the individual is no longer competent. Simple tasks like getting a new bank card for Mom or using Dad’s money to pay for his own medical care, are more easily accomplished when a person is appointed power of attorney.
HOW TO GET THESE FORMS – depending on the state you live in, getting the above forms can be as simple as speaking with your physician or with a social worker. The Power of Attorney forms can generally be obtained from an attorney. While there are versions available online, it is important to verify the document you have is the most current version as laws can change.
For information on Advanced Directives in New Jersey, click here; for New York, click here. For other states, visit www.lawhelp.org. Aside from getting over the hurdle of addressing this issue with your loved one and/or family, educating yourself about what is available can be a great way to start the process of planning ahead.
Have you already planned ahead and obtained any one of these documents? Have you tried but were unsuccessful? Feel free to ask questions or share your experience below.
The Critical Role of Caregivers, and What they Need from Us
Caring for loved ones who have aged or become disabled is not a new concept. Many of the services provided in hospitals, clinics and even funeral homes were once provided by families at home. Particularly in communities where traditional cultural beliefs are highly valued, taking care of an aging parent or grandparent is still a responsibility that families (usually women) are expected to take upon themselves. Inner discord can arise when caregivers challenge these traditions which can lead to guilt and in some cases lawsuits.
For example, proceedings from a roundtable hosted by the National Hispanic Council on Aging revealed that caregiver stigma is prevalent among Latinos, which can prevent them from seeking support and resources. Without help, the risk for burnout increases.
Results from a 2015 study by the National Alliance for Family Caregiving and AARP revealed that “an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months”. This number is likely to increase in the coming years due, in part, to an aging population.
Family caregivers perform a variety of services, including helping with ADLs, dispensing medications, managing finances, attending doctor appointments and advocating. Many do so while maintaining full-time employment outside of the home.
Respite is Essential, but lacking
The physical cost of caregiving is staggering, and there are few opportunities for respite. Even when respite is available, caregivers must consider the care recipients’ safety, and their desire to leave home. A person who has a disability or is ill can still make decisions regarding their care. So when they say no to respite care, it can’t be forced upon them. Desperate for a break, some caregivers have gone to extreme measures such as dropping off their loved one at the emergency room for respite. This is a problem that should be addressed in the years to come. But how?
Changes in the workplace
More companies and organizations are beginning to understand that caregiving without support can negatively impact worker productivity. In response, some companies have revisited their policies regarding family leave, allowing flexible work schedules and work from home opportunities. As employers seek new talent, they may find that policies such as these are attractive to job seekers. Two major companies, Deloitte and Microsoft, made headlines after incorporating paid time into their family leave policies. Other companies have adopted similar models.
As the nation grapples with how to provide better support to caregivers, it will need to improve major areas like extending paid leave to family caregivers, creating financial stability for those who need to provide full time care, and providing necessary training and respite to ensure the mental and physical well being for both the caregiver and the recipient. These changes require a shift in how we think about providing care, and changes in policy.
Caregivers are operating on tight schedules and don’t always have time to attend in person support groups. So having the option of connecting with others through online chats and support groups is more convenient for some caregivers. In addition, they could benefit from ongoing training and resources that will help them to more effectively and safely care for their loved one. This past September, the U.S. Senate passed the RAISE Act, which would require the development of a national strategy to address the growing challenges and economic impact of caregiving. The bill must now go before the House of Representatives.
The financial costs of caregiving cannot be ignored, and the average social security beneficiary does not earn enough to shoulder the burden of the financial costs they incur. Most caregivers likely work not only to maintain a sense of identity but also out of necessity.
Caregivers can face stressful decisions when it comes to choosing between work and providing care, particularly when their loved one is seriously or terminally ill. Too often, relatives are not eligible to be a paid for their time. And when they are, the earnings are not enough to make ends meet. Unfortunately, many caregivers often place their loved ones in skilled nursing facilities, simply because they cannot afford to care for them at home.
The question of who should provide care and how they will provide is one that has yet to be answered. While they wait, however, caregivers are facing stress and financial burden with few desirable options for support. And care recipients aren’t getting the care they so desperately need.
Stressed Out Caregivers Are Using ER Visits for Respite, Study Finds
Emergency room staff call it a “pop drop” – when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.
It’s been hard to actually study the phenomenon. A new University of Michigan study suggests that tired family caregivers are associated with greater ER visits and higher overall health care costs for the person they care for.
In a paper in the new issue of the Journal of the American Geriatrics Society, the team reports their findings from a study of 3,101 couples over the age of 65, each with one spouse acting as caregiver for their disabled partner.
The researchers looked at the Medicare payments and emergency department visits for the disabled spouses in the six months after the caregiver spouses took standard tests to measure their fatigue, mood, sleep habits, health and happiness.
Even after they took into account many factors, the researchers found that in just those six months, emergency department visits were 23 percent higher among patients whose caregivers had scored high for fatigue or low on their own health status.
Patients with fatigued or sad caregivers also had higher Medicare costs in that same time period: $1,900 more if the caregiver scored high for fatigue, and $1,300 more if the caregiver scored high for sadness, even after all other factors were taken into account.
The cost of unpaid help
“Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers, because other respite isn’t paid for,” says lead author Claire Ankuda, M.D., M.P.H. “But there hasn’t been a lot of data about it, and only recently has our society been talking about caregivers and potential ways to incentivize and support them as a way of keeping patients living at home.”
Ankuda, who led the study during her time at in the Robert Wood Johnson Clinical Scholars program at U-M’s Institute for Healthcare Policy and Innovation, is now training in palliative care at the Icahn School of Medicine at Mount Sinai.
“Informal caregivers, including spouses, enable older adults with functional disability to stay out of the nursing home and live at home where they’d prefer to be,” says senior author Deborah Levine, M.D., M.P.H., an assistant professor of internal medicine and neurology at U-M.
“We need to do a better job of identifying and supporting caregivers experiencing distress, in order to help caregivers feel better and hopefully improve outcomes in older adults with disability.” Deborah Levine, M.D., M.P.H.
Long-term data gives key insights
The couples in the study were all taking part in the long-term Health and Retirement Study, conducted by the U-M Institute for Social Research on behalf of the National Institutes of Health. Ankuda, Levine and their colleagues probed HRS data because it allowed them to correct for factors that other, short-term studies can’t – such as the baseline level of Medicare costs, demographic differences including income and education, and even whether the couples have adult children living nearby.
The findings add hard new data about the link between caregivers’ own experiences and the amount the Medicare system pays to take care of those the caregivers take care of at home.
Nearly 15 million older adults get help with everyday activities from spouses and other family or friend caregivers. In the new study, the researchers included couples where one spouse got help from the other with activities such as bathing, dressing, walking, getting into or out of bed, shopping, cooking, and taking medications.
Helping with these tasks on a daily basis, without pay or respite, can take a toll on the caregiver’s own health, wellness and mental state – which can lead to burnout. Medicare does not offer payment or formal respite coverage for family or friends who take regular care of older adults – and only covers home care by certified agencies under certain circumstances.
More research & services needed
Ankuda notes that studies on the impact of supporting family caregivers more formally are just beginning to produce results.
Meanwhile, health policy researchers are beginning to suggest that it may make fiscal sense to incentivize home caregiving, to keep seniors from needing more expensive nursing home care.
“I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department,” Ankuda says. “This is a high-cost, vulnerable population.”
Formal respite care, peer support groups and other options could also help stave off fatigue and sadness – and the hospital staff who notice “pop drop” practices could help steer caregivers to such options. So could the primary care clinicians who take care of both the disabled spouse and the caregiver.
Because the new study takes into account the level of Medicare spending for the disabled spouse in the six months before their caregiver was interviewed, it may actually underestimate the impact of caregiver fatigue, she notes.
Indeed, before the authors corrected for the full range of factors, they documented that Medicare costs were lower for patients whose spouse-caregivers who reported being happy or rested. They also saw higher costs among patients whose caregivers had higher depression scores on a standard mood questionnaire.
One factor that wasn’t associated with higher costs in the new study was the caregiver’s score on a standard measure of sleep habits. Sleep disruption is harder to quantify in older people, Ankuda notes. But the measurement of fatigue, which can result from both the strain of caregiving and poor sleep, was clearly associated with both higher rates of emergency department visits and higher overall costs.
Low Medicaid Rates Limit Beneficiaries’ Access to Assisted Living Facilities, Quality Care
More than 700,000 elderly and disabled Americans receive health care in residential care communities, such as assisted living facilities. As the population ages, this number will grow.
A new study by RTI International found that low Medicaid payment rates for services in assisted living and similar settings discourage residential care providers from serving Medicaid beneficiaries, which limits their access to community-based residential care.
The study found that some residential care settings limit the number of Medicaid residents they serve or decrease operating expenses in ways that may also reduce quality of care.
“Medicaid payment rates only cover services in residential care settings; they do not cover room and board,” said Michael Lepore, Ph.D., senior health policy and health services researcher at RTI and lead author of the study. “One of the access barriers is the difficulty that Medicaid beneficiaries have paying for room and board in residential care settings because of their low incomes. This situation dissuades residential care providers from serving Medicaid beneficiaries.”
Residential care settings are community-based homes or facilities that offer room, board and care services, the most popular being assisted living. Compared to nursing homes, these settings often are less institutional and are often the preferred setting.
If Medicaid beneficiaries with long-term service and support needs cannot access residential care settings, then nursing homes may be their only option, ultimately costing taxpayers more money because Medicaid payment rates for nursing homes are higher.
The study, published in the Journal of Housing for the Elderly, found barriers that influence Medicaid beneficiaries’ access to state-licensed residential care include Medicaid reimbursement rates for services, the supply of Medicaid-certified residential care settings and beds, and policies that affect room and board costs for Medicaid beneficiaries.
Researchers examined Medicaid policies in all 50 states and the District of Columbia, interviewed subject-matter experts, and conducted four state case studies informed by reviews of state policies and stakeholder interviews.
“States need to ensure their Medicaid rates for residential care services are sufficient to maintain an adequate supply of these settings and beds available to Medicaid beneficiaries, while also safeguarding quality of care and taxpayer resources,” Lepore said. “Higher Medicaid rates may encourage more residential care settings to serve Medicaid beneficiaries, which may help reduce nursing home use by older adults and people with disabilities and potentially reduce Medicaid spending on long-term services and supports.”
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