Tag Archives: long term care

Seniors At the Crossroads of the Opioid Epidemic

For me, the term “opioid epidemic” evokes images of alienated young adults or demoralized people in economically depressed areas who are unable to make a decent living.  The facts are somewhat different.  According to the Office of the Inspector General of the U.S. Department of Health and Human Services, one third of the 43.6 million Medicare Part D beneficiaries were prescribed an opioid drug in 2016, with one in ten receiving opioid prescriptions on a regular basis.  In the same year, half a million Part D beneficiaries were prescribed excessive amounts of opioids over at least a three-month period, and around 400 Medicare Part D prescribers had engaged in questionable prescribing patterns which put their patients at risk.  Millions of people over sixty-five are users, misusers, diverters, and victims of the consequences of the growing availability of opioid medication.

Opioids are narcotic drugs that bind with opioid receptors in the body and brain to produce both pain relief and an experience of euphoria.  They include the illegal drug heroin and a number of prescription drugs such as oxycodone, codeine, morphine, and hydrocodone.  The opioid drugs are highly addicting and often misused because of the blissful high that many of the drugs produce.  Used improperly, opioid drugs present numerous hazards, including respiratory depression, confusion, fall and accident risk, somnolence, physical dependence, and death.  The National Institute on Drug Abuse relates that in 2015 more than 33,000 Americans died from both legal and illegal opioid overdose, and, in the same year, approximately two million persons in the U.S. had an opioid substance abuse disorder.  Michigan is among the states with the highest number of opioid prescriptions per 100 persons.

When considering normal age-related physical changes, the extensive use of opioids by older adults makes sense.  These physical changes are often accompanied by pain, as tissues stiffen, become more fibrous, function less efficiently, and wear down.  We seniors become more susceptible to acute and chronic illnesses, with more serious symptoms, and our recovery from trauma is slower and less robust.  The National Institutes of Health estimate that half of older persons living independently experience chronic pain, and 75 to 85 percent of the elderly in residential care are chronic pain sufferers.  The Gerontological Society of America asserts that pain in older adults is “often suboptimally assessed and treated”.

Pain is a complex and subjective experience, but very real to the sufferer.  It has physiological components and psychosocial components such as grief, depression, anxiety, emotional trauma, and stress, that can all intensify the experience of physical pain.   Treatment of these other components through various forms of psychotherapy, spiritual counseling, mindfulness practices, biofeedback, acupuncture or psychotropic medications can make chronic pain more tolerable and improve function and quality of life.  In addition, the underlying physical causes of pain can sometimes be ameliorated, as by losing weight to reduce stress on arthritic joints or strengthening back muscles to diminish strain on degenerating spinal discs.

It appears that we arrived at this crisis through a number of interacting forces, including well-meaning attempts by health care organizations to improve pain amelioration; an emphasis on patient satisfaction, including pain control, as an element in Medicare reimbursement; misleading representations of the safety of opioid drugs; and the enormous sums of money to be gained from the exploding sales of these preparations, which almost quadrupled from 1999 to 2014.

The federal government is addressing the problem in several ways, some of them at cross-purposes and with unintended consequences.  The Drug Enforcement Agency, which issues production quotas on the manufacture of many controlled substances, including virtually all of the opioid drugs, has imposed radical quota reductions of opioids in the last two years.   As a consequence, many hospitals are experiencing shortages in opioid supplies and are rationing their use for surgery and other procedures.  In addition, opioid users should not abruptly cease taking the drugs because of the physical dependence and withdrawal symptoms that ensue.

The Centers for Medicare and Medicaid Services (CMS) last month proposed regulations to establish limits on filling opioid prescriptions for Medicare beneficiaries.  Part D plans would have “hard formulary levels”, with a maximum strength of opioid allowed and a limit of a 7-day supply.  Comments of the proposal were due on March 5th, and the final regulation may differ as a result of stakeholder feedback.   At the end of February, bipartisan senators introduced federal legislation to limit to three days the initial supply of opioids and to increase recovery services for persons addicted to the drugs.  The long-term care industry is urging Congress to exempt their facilities from the three-day limit, asserting that their residents represent a very low risk for opioid abuse, while many of them experience severe, ongoing pain.

A year ago, the Centers for Disease Control (CDC) issued a thorough Guideline for Prescribing Opioids for Chronic Pain, based on research evidence, a panel of experts, and existing guidelines.  The document offers twelve recommendations, some of which apply to all persons and others that require individual decisions based on the patient’s situation.  The recommendations cover when to initiate opioids for chronic pain, collaboration with patients to discuss treatment goals and potential risks and benefits, dosages and duration of opioid therapy, ongoing monitoring of benefits and harms, mitigating risk in high-risk conditions (including advanced age), use of prescription drug monitoring programs,  potential drug interactions, and treatment of opioid use disorder.  The CDC recommendations are very consistent with the balanced approach advocated by The Gerontological Society of America in their 2016 monograph on treating older adults with chronic pain.   The CDC also provides online clinical tools for prescribers and pharmacists to assist with implementation of the Guideline.

In May, 2016, relatively minor stress on my arthritic neck resulted in severe, unremitting referred shoulder pain, which continued for a month.  I took ibuprofen and a turmeric anti-inflammatory extract, applied cold packs, and engaged in mindfulness practices.  Those treatments did little to reduce the pain, and, though I went to work, I was irritable, had trouble concentrating, accomplished relatively little, was unable to sleep, and gritted my teeth to get through the day.  Finally, in week five, the anti-inflammatory treatment started to work; the pain became intermittent, and it lessened in intensity.  By the end of week six it had diminished to a dull ache, which continues intermittently.  Had the severe pain lasted longer, I certainly would have sought stronger drugs.  The experience left me with great empathy for those with chronic pain, and how it reduces productivity, impairs relationships, contributes to depression and anxiety, and produces a very diminished quality of life.

Opioid-related deaths are clearly unacceptable, but so is reducing people to suffering.  If we want to be a humane society, we need better ways to help our citizens have meaningful and enjoyable lives even in the face of advanced age, dysfunction, disability, and the bleak misery that often accompanies these conditions.  Overly restrictive manufacturing quotas to limit opioid supply for diversion and misuse is punishing those with legitimate needs.  Even if prescribers act to transition patients from opioids to other pain management approaches, opioids must be tapered over many weeks or months to avoid aversive withdrawal symptoms and sometimes serious health consequences.  We need coordinated solutions that account for the needs of all parties affected.

As the CDC suggests in their Guideline, there is a need to individualize treatment, since so many factors affect both the experience of pain and the advisability of using opioids in any individual patient.  If we need physicians and other prescribers to spend more time with patients assessing pain, exploring the goals patients have for treatment, educating patients and families on proper use and risks, developing collaborative care plans, monitoring drug use and effectiveness, and devising opioid exit pathways, we need to provide reimbursement codes for these services, so that there is payment for the additional face time with patients.  Such incentives would be less costly than the social cost of opioid use disorders, which is reported by the National Institute on Drug Abuse to have been $78 billion in 2013.

We also need unbiased funding for more double-blind controlled trials on promising alternatives to opioid drugs such as hypnosis, use of placebos, biofeedback, virtual reality distraction, Comfort Talk, turmeric extracts, and cannabinoid drugs, so that we can amass the evidence necessary to establish confidence and expertise in using them.  If we have learned anything from the opioid crisis it is that, as a country, we cannot allow the potential profits to manufacturers to establish health care practice.  We must fund research and establish treatment protocols that primarily benefit the individual patient and our society.

Sue Sweeney, Assistant Professor, Aging Studies Program, Madonna University

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Medicaid: Long Term Care Security

As a gerontologist and a member of the Baby Boom generation, I think about what the state of long term care may be in seven years when I join the older-old, those above age 75.  Most of us would prefer to remain in our own homes as long as possible, but ultimately many of us will need more supervised care in a residential setting.  Most people don’t realize what various types of long term care cost, and many have not accumulated enough retirement savings to pay for all of the long term care they will need, especially given the extended lifespan that is now possible.  In addition, there are a lot of misperceptions about the scope of long term care benefits available through Medicare.

logo-genworth-desktopGenworth Financial Insurance Company conducts an annual survey of long term care costs in the United States.  In 2016, the national median annual cost of homemaker services in an individual’s private home came to $45,756.  The median annual cost of assisted living was $43, 536, and the median annual cost of a semi-private room in a nursing home was $82,128.  The median annual 2016 costs in Michigan were generally somewhat higher than the national median.  Genworth is predicting a 34% increase in costs in ten years, and an 80% increase in twenty years.

Americans are not great retirement savers compared with other nations, but there are reasons for that omission.  For the middle classes especially, wages have been stagnant since the 1970s, while the cost of living has increased.  The cost of a college education is more than eight times gregg-chicken-eggs-raw-eggs-eggshell-128885eater than it was in the 1970s, while the Consumer Price Index rose approximately four times  higher during the same period.  Pensions, which guaranteed retirement income for life, have virtually disappeared.  As a consequence, workers have lost one source of retirement income, since the pension replacements, the 401(k) or 403(b) plans, result primarily from employee savings, rather than employer contributions.  Finally, the economic downturn, which began earlier in Michigan than in much of the rest of the country, eroded the savings of many unemployed mature workers.

Our family story is no different; we experienced layoffs in the 2000s, which used up our retirement savings, up to then.  I paid off my student loans two years ago, and my husband just paid off his this year. We’re still paying on Parent PLUS loans for our son’s college education.  We expect to keep working as long as possible, and we’re also working hard to stay healthy so that we can do so.  But health is a result of past exposure and lifestyle, as well as present health practices, and we don’t know what lies ahead.

We do know that we can’t count on Medicare to cover our long term care expenses; it wasn’t designed for that.  Medicare will pay for skilled care, such as rehabilitation services, at home or in a nursing home,  for a limited period of time.  It will also pay for hospice care.  It does not pay for  assistance with managing personal care or housekeeping or ongoing nursing support in any setting, except for the brief period in which skilled care is also needed.  Each of us will have to manage those care expenses out of our retirement savings.  But when we live longer than expected, or health care expenses are greater than anticipated, or when both spouses require custodial care, then income and retirement assets often prove insufficient, and people rely on Medicaid to pay for their care.

Medicaid pays for the health care costs of qualifying poor people of all ages.  Low income older adults most often have Medicare coverage, and Medicaid helps them pay for the considerable out-of-pocket premiums, deductibles and coinsurance costs that Medicare does not cover, estimated to average between $1,700 to $3,000 per year.  Those costs can escalate quickly with surgery or expensive long term medications.  It also helps the low income elders receive care at home, rather than a nursing home, if they are lucky enough to qualify for a Medicaid waiver program.  The Medicaid waiver program allows for case management, in-home services, and community-based services for low income ill or disabled persons who would otherwise require nursing home placement.  In Michigan it’s called the MI Choice Waiver Program, and it’s about one third less costly than nursing home care.

But most areas have long waiting lists for Medicaid waiver services, and rural areas generally do not have sufficient supply of community-based services to keep people in their homes.  At a cost of more than $82,000 a year, most people needing custodial care in a nursing home will run out of personal savings and assets in a relatively brief period of time.  At that point more than half of nursing home residents apply for assistance from Medicaid.  Because of Medicaid older adults worry less at night about where they may end up when the money runs out.

A fixed cap on federal Medicaid payments to states could remove that sense of security.  With increasing health care costs, increasing numbers of older adults, lengthening lifespans, and a stagnant economy, states will have to reduce Medicaid spending considerably.  What will we do with ill, disabled, and poor older people who no longer receive payment for their nursing home bills?

It is these thoughts that keep me exercising most days of the week, meditating daily, and keeping up my license and professional credentials.   However, these are just stop gap measures, and I don’t feel nearly as secure.

Sue Sweeney, Assistant Professor, Aging Studies Program, Madonna University

Caregifted: Respite for Long Term Caregivers

HEATHER_MCHUGH-John-D.-and-Catherine-T-MacArthur-Foundation-261x326McArthur Foundation Fellow and poet, Heather McHugh, decided to use her McArthur award money to start a non-profit respite program for family caregivers who have been caring for a disabled person in their homes for 10 years or more.  She calls her organization Caregifted.  Caregivers who qualify submit a simple application and a medical certification of the care receiver’s need for care.  Ten caregivers each year are given week long respite trips, and the Caregifted website relates their experiences and what the week of respite means to them.

McHugh reports that a family close to her and caring for a child with disabilities made her aware of the unremitting tasks that claim the parents’ attention.  This was the inspiration for Caregifted.  I am inspired by the creativity that McHugh and her colleagues have brought to the organization.  Fund raising includes an auction of art works and a literary review. Additionally, the organization is producing a documentary on long term caregivers entitled Unsung.  Snippets of the film footage can be viewed here.  By any measure, McHugh has been successful as a poet and academic, yet she decided later in life to offer a service very little related to her earlier career path. This endeavor illustrates to me that, regardless of stage in life, we can all find ways to collaborate with like-minded others and apply our talents to improve lives and make a unique contribution.CaregifredLogo

2015 White House Conference on Aging

logo-WHCOA2015This is the year for the decennial White House Conference on Aging.  However, the Older Americans Act, which traditionally has outlined the Conference process, has not been reauthorized and the President’s budget has not been approved.  As a result, there are very little structure and no additional funds for the 2015 Conference.

nora-super-140Ms. Nora Super is the Executive Director of the Conference.  Her background includes more than twenty years experience in aging policy and community outreach.  The four themes that have emerged from community input, so far, are Retirement Security, Healthy Aging, Long-Term Services and Supports, and Elder Justice.  There is a blog for the Conference at  http://www.whitehouseconferenceonaging.gov/blog/   A number of regional forums are also scheduled.  The closest one to SE Michigan is the conference in Cleveland, OH on April 27th.

The Administration is using social and electronic media as much as possible to receive grass roots input and conduct informational meetings.  Everyone can participate by going to the web site and signing up to receive notices of events, such as webinars, and opportunities to participate.  You can also provide your thoughts and/or a story about your experience with aging or aging services, such as Medicare, Social Security, or in-home services, by submitting them through the following link:  http://www.whitehouseconferenceonaging.gov/submissions/register.aspx

Here’s the contact information if you have specific questions:

White House Conference on Aging
200 Independence Avenue SW, Suite 637D
Hubert H. Humphrey Building
Washington, DC  20201
(202) 619-3636
info@whaging.gov
www.whitehouseconferenceonaging.gov

Aging touches everyone.  I encourage you to participate in this opportunity for civic engagement at a time when our society includes the greatest proportion of older adults in history.

Sue Sweeney, Chair, Department of Aging Studies, Madonna University

Ways to Engage Persons With Dementia

Art suppliesPeople with dementia are often unable to keep themselves occupied because of the effects of the disease.  They may not be able to call to mind the possible things to do in any given moment.  If they can think of things to do, they may not be able to figure out the sequence of steps to accomplish the goal.  They may not be able to initiate an action, or the tasks needed to find and gather supplies or tools may be overwhelming.  However, individuals with cognitive impairment need stimulation and challenge to retain remaining function as long as possible, to improve or retain self-esteem, and to retain or improve quality of life.

In a residential setting, the person with dementia has the opportunity to watch others’ behavior or to interact with others in their environment.  They can be invited to a group activity conducted by one caregiver, while others prepare for a meal or attend to individual needs.  In a family setting, the caregiver may be occupied with housekeeping and meal preparation, while the affected person sits idly by.  In either case, the television can be an easy substitute for interaction and stimulation, but it, too, can become isolating and tedious when overused.

As with any aspect of dementia care, knowledge of the person and of the disease process is essential in designing and carrying out effective activities.  The project should be meaningful to the participant, often relating to hobbies, interests, or vocation from earlier in life.  The goal of the activity is engaged enjoyment, rather than achievement of a purpose or product.  Sometimes that’s hard to gauge in a person with dementia. If the person is willingly participating and gives sustained attention, it’s probably a success.  Asking questions, reminiscing, staying on task, looking for appropriate items or pieces, erect body posture, appropriate bodily movements, or an intent or relaxed facial expression are all indicators of engagement.  The signs of engagement may be very subtle.  In a dementia residence in which a singer was performing Elvis Presley songs, I watched a woman sitting glumly in her chair with her head down.  I thought that the music was lost on her, until I noticed that her toe was keeping time to the rhythm.  I caught her eye and smiled, then started singing.  She began singing with me!

Don’t expect the same activity to be well received every time.  A repertoire of pastimes is needed to meet the person where they are at the moment.  Because of a bad night, an activity which requires more concentration may not be fitting.  The time of day can dictate the appropriateness of a given pursuit.  Some people are more energetic in the morning, while others take much longer to get going.  Late afternoon and early evening may be a time for soothing music and a back rub, especially if the person is prone to the agitation that comes with sundowning.  What was a favorite activity for a long time, can become frustrating a year or so later when the disease has progressed and the person’s abilities have changed.  That activity may need to be broken down in to smaller, doable steps or modified so that the challenge is lessened.

Even though persons with dementia have limited abilities, they have the need to feel useful and contributing.  Introducing ways that they can make a contribution helps maintain their sense of self esteem and self worth.  Drawing on skills cultivated in the past, a person may be able to put stamps on envelopes, to fold clean clothing, to set the table, to sand wood, to mix cake batter, to cut out coupons, to sort objects or other aspects of daily life.  The caregiver needs to remember that the process is what is primary.  If the folded clothing are not as neat or the fork and knife are not placed properly on the table, that’s immaterial if the person enjoyed the task and felt useful.  Knowing the person and the disease process also helps assess the safety of the process.  One person with dementia may be able to use scissors or a paring knife, while another person, or the same person in later stages of the illness, may not be able to do so safely.

We all relate to the different aspects of our selves:  physical, intellectual, emotional, social, and spiritual.  Persons who suffer cognitive impairment also possess all of those human elements.  Accordingly, they need opportunities to connect with and express those parts of themselves. Again, the ways that they did so in the past can guide the caregiver to devising experiences that will be meaningful in the present.  If the person had been a churchgoer, forms of spirituality that the individual encountered in church will probably touch him or her, such as formal prayer, rituals related to religious observances, and religious holiday traditions.  Others may find spiritual fulfillment in photos of nature, poetry, or music.  The physical self can be addressed through sensory stimulation (such as aroma therapy, viewing art, tasting various foods, or a hand massage), through exercise appropriate to the person’s abilities, or through gardening or tending house plants.

The emotional aspect of self can be engaged while viewing and discussing an epic film, such as Gone With the Wind, through listening to a good story, and through reminiscing about family or important milestones in the past.  Social needs can be met by participating in an adult day program, having a visit from friends or family members, looking at family albums or video while talking about the people depicted, or playing with a pet.  And intellect can be stimulated during all of the above activities, as well as puzzles, card games, sorting objects, discussing the news, playing trivia games, making crafts, or doing art.

Persons with dementia seem to be particularly attuned to music and art,  perhaps because these stimuli are processed more by the right hemisphere and sub-cortical brain structures.  Their enjoyment is also non-verbal and subjective.  It is not uncommon to find that a cognitively impaired person who had been a musician but can now barely speak, can still sit at the piano or other instrument and play nearly as well as in the past.  Or to encounter an individual who had not spoken for some time singing along with a favorite tune from the past.  Persons with dementia, who had not seemed particularly artistic in earlier life, can become avid artists after discovering painting or collage or pottery in later years.  When given an iPod, Henry’s response to music is remarkable, as recorded in the YouTube video, narrated by Oliver Sacks: http://www.youtube.com/watch?v=5FWn4JB2YLU

Teepa Snow has published a useful essay, “Activities for People With Dementia”, which includes good points on matching the task to the individual and sample activity schedules for three demented individuals with different needs and abilities.  Another helpful resource is a brochure from the Alzheimer’s Association called “Activities at Home”,  which offers good advice on activity planning.  By using imagination and forethought, there are thousands of things a caregiver can do to engage a person with cognitive impairment.  This link from the Alzheimer’s Association can get you started, with “101 Activities”.

Like Henry,  persons dealing with cognitive impairment often have areas of ability that are preserved but undetected.  They have talents and awareness that are not expressed because there is no opportunity for them to appear.  There is still a human soul  “in there”, and our efforts to engage the whole person can reward us with startling glimpses of the person that remains and the spark of life that animates all of us.  Sue Sweeney, Chair, Gerontology Department, Madonna University