Spousal Caregivers Often Take On Medical Tasks, Lack Support

Spousal Caregivers Often Take On Medical Tasks, Lack Support

Posted on Thursday, April 24th, 2014 at 8:01 am by lifemediamatters

Image: Couple by George Hodan

 ”Couple” by George Hodan via Creative Commons

Spousal caregivers are significantly more likely than other family caregivers to perform the complex medical tasks of professionals while being far less likely to receive vital support, according to new findings published by the United Hospital Fund and the AARP Public Policy Institute.

Spousal caregivers tend to be older, less educated and less financially stable than non-spousal caregivers, such as adult children or siblings. The average age of a spousal caregiver is 64, a decade older than non-spousal caregivers, according to the 2011 survey of more than 1,600 caregivers. Nearly 50 percent of spousal caregivers have only a high school education or less, and more than half have incomes of less than $50,000. Only one-third are employed.

The most common physical health conditions of spousal care recipients are stroke and hypertension, musculoskeletal diseases (arthritis), heart disease, diabetes, cancer and lung disease. Spouses may be less attuned to changes in cognitive status and sensory deficits, because they spend so much time with their spouses, according to the study.

“The challenges spouses who are caregivers face are daunting,” said Susan Reinhard, senior vice president and director of the Public Policy Institute and co-author of the report. “Nearly three-quarters of the spouses they care for were taking five or more medications, which are not easy to coordinate. And some of these medications were administered in non-pill forms, including injections and infusion pumps, with greater frequency than one might expect.” Nearly half of spousal caregivers provide care for three years or more.

The researchers said they expected to see caregivers reporting their help with activities of daily living, such as bathing, dressing, eating, shopping and managing finances. However, most spousal caregivers also reported performing complex medical and nursing tasks, including medication management, wound care, and using meters or monitors. Seventy-three percent of spouses who said that medication management was one of their two most difficult medical tasks performed it at least daily.

While all family caregivers reported their care recipients received few home visits from health care professionals, spouses fared far worse: 84 percent of spousal care recipients received no home visits, compared to 65 percent of non-spousal care recipients. More than half of spousal caregivers also reported receiving little to no help from friends or family.

“As a former spousal caregiver, I certainly understand the desire to take care of all of a spouse’s needs,” co-author Carol Levine, director of the Families and Health Care Project, told AARP. “But the care that is needed and the responsibilities thrust upon family caregivers by our health care system— typically, without adequate support— are more than any family caregiver, particularly an older spouse, can handle alone.”

It remains unclear why spouses receive less support, but the research suggests it could be due to a lack of awareness about resources, financial limitations or fear of losing independence. Reinhard and Levine call for additional research on spousal caregivers to help better tailor interventions that support, but do not supplant, the bond between spouses. “Spouses may know their partner, but they are not trained to be nurses or social workers.”

In 2009, there were an estimated 42 million unpaid caregivers in the U.S., providing an estimated $450 billion worth of unpaid care to adult and aging relatives and friends, according to an AARP survey.


Senator Advances Bill To Pay Medicare Beneficiaries To Register Advance Directives

Posted on Tuesday, April 22nd, 2014 at 7:33 am by lifemediamatters

U.S. Sen. Tom Coburn, R-Okla., along with Sens. Christopher Coons, D-Del., and Richard Blumenthal, D-Conn., introduced a bill to the Senate (S. 2240) that would “encourage Medicare beneficiaries to voluntarily adopt advance directives guiding the medical care they receive.” The regulations for the bill are to be created by a broad group of stakeholders.

Specifically, the bill would:

(a) Establish an advance directive certification program

Under the bill, a program would be created that encourages Medicare patients to “adopt and maintain” advance directives. By this term, the bill means

“…instructions that outline the kind of medical treatments and care that such beneficiary would want or not want under particular conditions, and may also include the identification of a health care proxy or legal representative to make medical treatment decisions for the beneficiary if the beneficiary becomes unable to make or communicate these decisions.”

The bill is clear that the program is voluntary, and that a directive can be canceled at any time. The bill also does not supersede state law, suggesting that the bill does not state what must be in the advance directive or what form must be used—  those choices are left up to states.

(b) Accredit vendors of online and written stored advance directives

The bill also seeks to examine best practices for current storage and completion of advance directives in order to establish a registry available both online and in hardcopy. It also allows individuals to delete advance directives when no longer valid or wanted.

The bill does not create a national registry, but it allows a person to indicate in their annual Medicare registration where the directive is maintained.

The accreditation part would ensure that vendors have an online process and manual backup with real time access. It would also conform with privacy protections under HIPAA and electronic security.

(c) Provide an incentive for completing an advance directive

The bill allows for payment to a Medicare beneficiary who registers an advance directive. For example, you would be paid $75 if you use an online process and $50 if you use paper. The amount would increase annually– tied to the rate of inflation. This is a one-time cash payment directly to the beneficiary. In addition, the bill requires education materials and programs for beneficiaries.

Not Far Enough

While this bill should be applauded as a step toward making advance directives more readily available when needed, it does not go nearly far enough. For full disclosure, I am the creator of TexasLivingWill.org, an online advance directive completion and storage database. One of the many challenges with a state-by-state approach to registry is that if I were to travel out of state, a hospital or physician may not know to look on this registry for my advance directive. Even within one state, there are few jurisdictions that have a single official registry, or even a government sponsored one. Some private registries charge upwards of $250 per year. Where this proposed bill falls short is in not creating a free-to-the-consumer federal registry that would be known everywhere and accessible by all health care groups.

“Perhaps instead of handing cash to people for filing an AD, that money would be better spend on giving people a paid session with a qualified professional to undergo advance care planning.”

In the original versions of the Affordable Care Act, physicians would be paid for an office visit to discuss advance care planning (more than just completing a document, but rather: “A process that involves preparing for future medical decisions in the hypothetic event that individuals are no longer able to speak for themselves when those decisions need to be made”). This segment of the law was removed after Sarah Palin’s campaign claiming this would establish “death panels” to decide who lives and dies.

This bill does not reinstate funding for such an office visit. The bill requests a one-size-fits all solution through educational materials that do not take into account local differences in law or personal preferences. If there is not a single federally sanctioned form or registry, then education must be local.

Plus, as the history of advance directives has taught, the conversation is usually more important than the document— this bill provides no mechanism for holding meaningful conversations, never mind paying for them. Perhaps instead of handing cash to people for filing an advance directive, that money would be better spent on providing patients a paid session with a qualified advance care planning professional.

Text from draft of S.2240

Text from draft of S.2240

A debate in the world of advance directive advocacy has been whether these documents fall under HIPAA. On one hand, there is no private health information in these documents. There is more identifying information about your surrogate (address, phone number, email) than there is about the person completing the document. On the other hand, these documents should be part of the medical record; thus, they would fall under the HIPAA guidelines. This bill removes the question once and for all.

Too Far

This bill would seem like a positive step to many of us, but there are many voices in opposition. For instance, Wesley J. Smith J.D., the spokesperson for conservative bioethics, is against the bill. Smith does not trust the federal government to run this sort of program. He says he fears that what starts as voluntary would become not only mandatory, but that federal “death panels” would decide who lives and dies. Secondly, Smith says he fears that certain non-profit organizations would use this bill as opportunity to push “ideology” and further the “agenda” of a culture of death, in which such things as assisted suicide and euthanasia are accepted and encouraged. Smith does not provide any evidence that any group is behind this bill.

Some political groups and community members oppose the concept of advance directives. These groups are concerned that advance directives are a slippery slope to required euthanasia, and that there are certain interventions that no one should ever have the right to refuse (artificial nutrition and hydration or “food and water”).

Perhaps the most rational argument against this bill is that the effectiveness of advance directives in honoring end of life wishes has an uneven record. Few studies show that advance directives improve outcomes.

Another concern is that paying people $75 to register a directive may be coercive. The average monthly Social Security benefit is $1,185.36, ranging from an average of $307.72 for spouses of disabled workers to $1,297.55 for retired workers. Thus, the $75 benefit is 5.8 to 24 percent of a person’s monthly income if receiving Social Security (for the one month where the benefit is received). For those on the low end of the scale, this amount may be an overly strong incentive to complete an advance directive. The monetary value may push them to file  papers, any papers, without giving adequate reflection and conversation to what is in the advance directive.

Personal Reflections

What might be most surprising about this bill is its main sponsor, Sen. Coburn. He is a staunch conservative, known by the nickname, “Dr. No.”  During the debate about “death panels,” Sen. Coburn is alleged to have supported this damaging rumor.

U.S. Sen. Tom Coburn, R-Okla.

U.S. Sen. Tom Coburn, R-Okla.

Life has a way of changing minds. I was taught that the way to convince a legislator that your idea is important is an appeal to personal experiences. Besides being a senator, Sen. Coburn is a physician who has been undergoing treatment for recurrent prostate cancer. His personal struggles and knowledge have likely influenced his bill and his willingness to reach across the aisle for support.

This bill is paved with good intentions. In the end, some pundits feel it does too much; for others, it does not nearly enough to improve death and dying in America.


Alzheimer’s Disease Support Model Could Save Minn. Millions

Posted on Monday, April 21st, 2014 at 8:47 am by lifemediamatters

As states eye strategies to control the costs of caring for Alzheimer’s patients, a New York model is drawing interest, and findings from a study of Minnesota’s effort to replicate it shows it could lead to significant savings and improved services (The Washington Post).


How Dementia Is Changing Me: My Battle With An Ever-Shifting Identity

Posted on Monday, April 21st, 2014 at 8:32 am by lifemediamatters

For my 61st birthday, in 2010, I was given the diagnosis of microvascular disease, after Alzheimer’s, the second leading cause of dementia. I was – as my rather blunt neurologist put it – already “dementing”. Insofar as I had thought about dementia until then, I was unaware that the word had a verb form: he/she/it dements, they dement, we all dement. Yet, no matter, I was incredulous that this absurd verb could apply to me. Now, two years later, “the cloake sitteth no lesse fit” on my chastened back (The Independent).


California ‘Death with Dignity’ Advocates Launch New Campaign

Posted on Monday, April 21st, 2014 at 8:32 am by lifemediamatters

A new campaign is underway to legalize physician-assisted suicide in California. Advocates launched a series of online ads last week to begin raising awareness. Still, it could take years for the effort to yield any results (The California Report).