Dementia: How long can a person live without eating or drinking?

By Belinda Weber

Many people living with the later stages of dementia may not eat or drink. They may also develop dysphagia, which prevents them from swallowing effectively. How long a person can live without food and liquids varies, but doctors believe that sufficient end of life care may help improve their quality of life.

Dementia refers to a group of neurocognitive conditions that can permanently damage the brain. Alzheimer’s disease is the most common type, accounting for between 60% and 80% of dementia cases, according to the Alzheimer’s Association.

This article explains why someone living with dementia may stop eating and drinking. It also suggests ways carers can support them.

There are many reasons a person may stop eating and drinking. As a neurocognitive disorder progresses, most people become less active and do not need to consume as many calories.

According to the National Foundation of Swallowing Disorders, at least 45% of people living with dementia also experience dysphagia, which refers to difficulty swallowing. This can cause a person to be unable to consume adequate nutrition and liquids.

People living with dementia may also notTrusted Source be as diligent about their oral hygiene as they once were. This can cause them to have sore mouths, teeth with infections, or ill-fitting dentures.

Another reason may be that the damage in the brain has spread to the hypothalamus, the area that regulatesTrusted Source food intake. Alternatively, it could be that the person no longer recognizes things as food or forgets about eating.

Age can also play a part as the muscles involved in swallowing lose mass, resulting in a loss of strength and range of motion. The person may feel as if they are choking on food or cannot move it out of their mouth.

No one can say for sure how long someone can survive without eating or drinking, as it involves many factors. These include the person’s age, overall health, and how well their immune system can fight infections.

If someone has dysphagia, this can indicate that their neurocognitive disorder is progressing, as dysphagia usually occurs in the later stages. This increases the risk of a person inhaling food or liquid, leadingTrusted Source to chest infections.

While it is impossible to predict exactly how long someone can live without eating or drinking, having dysphagia can mark the beginning of end of life careTrusted Source.

People living with a neurocognitive disorder may benefit from end of life care for days, weeks, months, or years.

Artificial nutrition and hydration (ANH) is a procedure where doctors deliver nutrients and fluids intravenouslyTrusted Source into a person’s body via a tube. This tube runs into the stomach from the nose or a device fitted into the stomach.

However, these doctors need to administer these treatments in a medical setting, and many people with a neurocognitive disorder find the experience distressing. Some individuals may try to remove the tubes.

Doctors do not agree about recommending ANH for people living with late stage dementia as it is unclear whether it provides any overall benefits.

The American Speech-Language-Hearing Association notes that tube feeding does not improve the quality of life of a person with a diagnosis of dementia. Additionally, it states that tube feeding does not reduce their risk of developing a chest infection.

The Alzheimer’s Association recommends people living with a neurocognitive disorder plan their late stage care while they can still express themselves and make decisions. This can include whether or not they want ANH.

When someone living with dementia is nearing death, they tend to deteriorate more rapidly. They may develop incontinence and agitation.

According to the United Kingdom’s Alzheimer’s Society, signs that death is near for someone living with dementia include:

  • loss of consciousness
  • irregular breathing
  • restlessness
  • rattly sound in the chest
  • cold hands and feet

A 2019 study listed pneumonia as the cause of death for 50%Trusted Source of people who required hospital care due to dementia.

Doctors recommend helping someone eat and drink for as long as they can, even if they eat in small amounts. The Alzheimer’s Association suggests:

  • offering soft foods
  • thickening liquids with cornstarch or unflavored gelatin
  • alternating bites of food with sips of drink
  • offering sherbet or ice cream
  • serving finger food if someone has difficulties using cutlery
  • helping the person sit in an upright and comfortable position

Many people living with a neurocognitive disorder may stop eating and drinking. This may be due to infections, but it may also result from individuals experiencing swallowing difficulties.

Swallowing difficulties, or dysphagia, often indicates that the person’s neurocognitive disorder is progressing and may have reached the later stages.

Doctors believe that the person’s body adjusts to the reduced food and liquid intake and that people do not feel hunger or thirst.

Swallowing difficulties increase the risk of inhaling food particles or fluids, which can lead to chest infections, including pneumonia.

Complete Article HERE!

Race and ethnicity affect end-of-life care for dementia patients

— More than half of Medicare beneficiaries are diagnosed with dementia during their lifetime and, of those diagnosed who receive intensive end-of-life care, most are from racial and ethnic minority groups, according to a new study.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” says Elizabeth Luth.

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Intensive treatment includes mechanical ventilation, intubation, feeding tube initiation, and new dialysis.

Researchers have known that race and ethnicity play a role in the intensity of medical care at the end of life, but the difference is more pronounced among individuals with dementia, they say.

“Dementia appears to have a multiplicative effect,” says Elizabeth Luth, an assistant professor in the family medicine and community health department at Rutgers University and lead author of the study published in the Journal of the American Geriatrics Society.

“This difference is not problematic if it reflects patient preferences for intensive services,” says Luth, who is also a faculty member at Rutgers’ Institute for Health, Health Care Policy & Aging Research. “However, additional research is needed to understand whether these differences may be attributable to other factors, including systemic racism, discrimination, poor physician communication, and other barriers to accessing health care.”

To measure the role of race and ethnicity in end-of-life care for people with dementia, Luth and colleagues calculated total medical costs for 463,590 Medicare beneficiaries nationwide. Using claims data, the researchers tallied inpatient, outpatient, carrier, skilled nursing facility, and hospice expenditures for patients’ final 30 days of life. Higher costs indicated greater care intensity.

In addition to determining 51% of Medicare patients die with a dementia diagnosis claim, the researchers made another discovery: Race and ethnicity may influence how people with dementia live out their final days.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” Luth says.

The magnitude of this effect differed by dementia status. For example, among people without dementia, compared to non-Hispanic Whites, Asian American, and Pacific Islanders had 73% higher odds of intensive care at the end of life. However, among persons with a dementia diagnosis, Asian American and Pacific Islanders had 175% higher odds of receiving intensive procedures.

The findings should prompt efforts to improve end-of-life care and outcomes for people with dementia, Luth says. Medicare reimbursements for physician-led advance care planning conversations could help, she says, as would end-of-life care counseling for all hospitalized patients.

“In the absence of a designated decision maker, the default approach in end-of-life care is to provide intensive services,” Luth says.

“If there isn’t anybody advocating either way, whether it’s the family or the patient themselves, the default is always more hospitalization, which might not be the type of care the patient wants or needs.”

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After a Dementia Diagnosis

— Preparing for the Future

A diagnosis of dementia, a category of diseases affecting memory and thinking that includes Alzheimer’s disease, can feel overwhelming and upsetting. You might worry that you will lose control over your life and ability to make your own decisions. Fortunately, receiving a diagnosis of dementia or Alzheimer’s does not mean that you cannot execute legal documents or make decisions about plans for your future finances and health care.

People with dementia can execute legal documents to plan for their futures when they have the mental state — or capacity — to do so. Capacity refers to your ability to understand the contents of a legal document, such as a will, and know the consequences of executing it. If you know who your family is, understand your assets, and comprehend your will, you can execute a valid will and plan for the distribution of your estate after your death, provided you understand what you are signing and its effect on your life.

The following can help you in planning where you wish to live, what kind of care you receive, and what happens to your assets if you get severely ill or pass away.

Health Care Power of Attorney

Consider appointing a health care agent to make medical decisions if you become incapacitated. You can name a health care agent using a health care power of attorney, sometimes called a medical power of attorney or a durable power of attorney for health care. Your health care agent can make medical choices if you can no longer do so.

Picking someone you trust, such as a responsible child or spouse, or another family member, can give you peace of mind that they will have your best interests and desires in mind when they make decisions. For instance, dementia patients who prefer receiving in-home care can express this wish to their agent.

In the power of attorney document, you can also state your intentions regarding health care and limit your agent’s capabilities if you wish.

Living Will

For an added layer of protection, you can also draft an advance directive or living will that states your desires regarding medical treatment if you are unable to communicate with your physician. Your living will can express whether you want treatment to prolong your life.

Financial Power of Attorney

Using a financial power of attorney, known as a power of attorney for property, you can select a trusted individual to handle your financial affairs if your disease progresses such that you can no longer make financial decisions. Your financial agent can manage your money and pay bills on your behalf, but they cannot use your money for themselves.

In the power of attorney for property document, you can restrict your agent’s powers. For instance, a person might specify that the agent can manage personal accounts, but not sell the family home.

Long-Term Care Planning

After a dementia diagnosis, consider whether you would like to receive long-term care at home or in a facility, and whether you intend to apply for Medicaid or long-term care insurance. If you want to apply for Medicaid, you might need to prepare your finances to become eligible.

Last Will and Testament

Making a last will and testament, also known as a will, can help ensure your assets go to your family and friends when you pass away. You can determine how much of your money each beneficiary will receive and make bequests to individuals. For example, if you have items of sentimental value, you can leave them to specific people. Without a will, your assets will transfer to your heirs according to the law in your state.

Consider meeting with an elder law attorney in your area to discuss your plans for your future.

For additional support and to learn more about Alzheimer’s disease and related disorders, reach out to your local Alzheimer’s Association chapter.

Complete Article HERE!

Dementia in Prison Is Turning into an Epidemic

— The U.S. Penal System Is Badly Unprepared

Older prisoners will make up a third of the prison population in a decade, and many of them will develop dementia

By Sara Novak

Terrell Carter remembers one prisoner in particular. They had both been seeking commutations of their life sentence so they could eventually apply for parole. But Carter says that in the midst of the process, his fellow inmate became so debilitated with dementia that the man could no longer function well enough to complete the paperwork.

Within a few months, Carter says, this prisoner was incapacitated, lying in bed with arms outstretched over his head, calling for help. Carter, an inmate who volunteered in the hospice ward of State Correctional Institution Phoenix in Collegeville, Penn., says that his fellow prisoner languished and eventually perished in prison because he was too mentally impaired to file for forgiveness. “By the end, he didn’t know the crime he was charged with committing,” Carter says

In the October 2021 issue of Northwestern University Law Review, Carter, along with Drexel University associate professor of law Rachel López, argue that the current sentencing structure all too often locks people up and throws away the key. A former commissioner on Pennsylvania’s sentencing board, López is especially concerned with the number of elderly people who are incarcerated. “It’s all part of the legacy of the ‘tough on crime’ era,” she says.

A survey by the Pew Charitable Trusts found that the number of inmates age 55 or older increased by 280 percent from 1999 to 2016. Three-strikes laws and mandatory life sentences without the possibility of parole expanded during the 1980s and 1990s, and many of these laws are still on the books today. As the number of aging prisoners balloons, so, too, do instances of dementia. An article López authored in the June 2020 issue of Federal Sentencing Reporter projected that between 70,341 and 211,020 of the estimated 400,000 incarcerated elderly in 2030 will develop dementia. Alzheimer’s disease is the most common diagnosis, but dementias that involve Lewy bodies, the vascular system and Parkinson’s disease are also on the list.

Prison may also accelerate aging and the possibility of developing the disease, according to a January 2022 article published in the journal Health & Justice. Study author Bryce Stoliker, a researcher at the University of Saskatchewan, says that the high risk is because of challenges faced in prison life—and inmates’ experiences before incarceration. Prisoners are often marginalized members of society with less access to health care, poorer diet, issues with alcohol or drug misuse, mental health problems and potential traumatic brain injuries—all factors that increase the likelihood of developing the condition. “Once behind bars, a lack of stimulation and an overall poor quality of life magnifies the problem,” Stoliker says.

Prisoners with dementia are also vulnerable to abuse. Their erratic behavior and inability to follow directions is aggravating to other prisoners and to the staff in an already tense and sometimes violent environment, says Tina Maschi, co-author of the book Aging Behind Prison Walls: Studies in Trauma and Resilience.

A 2012 study she authored in the Gerontologist found that those with dementia are increasingly vulnerable to “victimization.” If they become aggressive toward staff or can’t stay in line, they’re more likely to be reprimanded. “They’re no longer in touch with the prison rules, and as a result, it appears to staff, who often aren’t trained in dealing with dementia patients, that they’re acting out,” Maschi says. Additionally, according to the study, they can become victims of sexual assault by other prisoners because they can’t defend themselves.

With strict sentencing practices still in place, the problem could get worse. The American Civil Liberties Union projects that in a decade, prisoners age 55 and older will make up one third of the U.S. incarcerated population. And prisons, López says, don’t have the resources to tend to this highly vulnerable population. Still, there may be some relatively available short-term solutions. Older prisoners are often housed together, but senior structured living programs that include daily stimulation such as puzzles, knitting and cognitive exercises may help to reduce the risk of elderly prisoners who get dementia later on.

True Grit, a program at Northern Nevada Correctional Center, is described in a review published in the December 2019 issue of Health & Justice. It teaches inmates older than age 55 skills such as latch rug making, crocheting, painting, jigsaw puzzle making and beading, as well as emphasizing the importance of physical exercise. The program has been shown to increase inmate quality of life, reduce medication use and behavioral problems, and enhance overall health and well-being.

Compassionate release is another tool that is largely underutilized, according to experts. Also called “geriatric parole,” it’s currently used once patients get to the end of their life. But for the program to reduce the elderly burden on the prison system, it would have to be used before inmates are so ill that they can no longer be integrated back into society. Once prisoners are too far gone, says Ronald Aday, author of the book Aging Prisoners: Crisis in American Corrections, it’s much harder for them to find “a place to land” outside of prison, and nursing homes are unlikely to admit a felon. Still, a 2018 report from Families Against Mandatory Minimums (FAMM) found that the program is rarely used and that, in many states, it presents aging inmates with a troubling “number of barriers” to getting out.

When inmates do develop dementia, prison workers, at a minimum, need to be provided with basic training to deal with the disease. “Correctional staff and those in direct daily contact with older prisoners need to understand both their vulnerability to other inmates and their inability to understand orders,” Aday says.

Looking ahead, dementia wards in prison may be needed to house prisoners with cognitive problems. One such memory ward opened in 2019 at Federal Medical Center Devens in Massachusetts. The facility staff is specially trained to take care of those with dementia.

But building dementia wards in prisons shines a spotlight on a larger issue: prisons are not properly equipped to house these patients because this was never their purpose in the first place. “The original intent of prison was to rehabilitate,” Aday says. “Correctional institutes were meant to ‘correct people’ so they could go back out and work.” Somewhere along the way, he adds, we’ve lost our purpose, and as a result, 10-year sentences have tripled, and life in prison without the possibility of parole is all too common. If we don’t get ahold of our out-of-balance sentencing structure, Aday says, we’ll never be able to really address the issue.

Carter, now age 53, feels lucky that he made it out “by the skin of his teeth.” After graduating from Villanova University and spending years taking care of elderly inmates, he was able to commute his sentence to life with parole for a robbery that he says went terribly wrong when he was 22 years old. Last July he was released after spending three decades in maximum-security prison.

Still, Carter is haunted by those he left behind, especially in the hospice ward. He says by the end of their life, most of them don’t even realize where they are, let alone what got them there. “You gotta wonder what kind of punishment it is if you don’t even know you’re in prison,” Carter says.

Complete Article HERE!

We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article HERE!

1 in 2 older adults now die with a dementia diagnosis

by Kim Callinan

Nearly half of all older adults now die with a dementia diagnosis, up more than one-third (36%) in just the past two decades, according to a new study published in the Journal of the American Medical Association.

While these findings are disheartening, they also serve to underscore the importance of advance care planning for the care we want – and don’t want – should we get dementia. Thinking through these difficult decisions and having conversations with our loved ones and healthcare providers now, while we are still capable of making our healthcare decisions, will be a gift to our loved ones and to ourselves.

A good time to discuss your end-of-life care wishes with your family is when you are together, like Memorial Day weekend in May.

It’s important to keep in mind that dementia, as a public health crisis, came as a result of significant advancements in medicine.

As we have discovered cures or treatments for many diseases over the last century that used to be life-threatening, life expectancy has increased, and more people are dying with and from dementia. In short, medicine can prolong how long the body lasts, but not the mind.

However, the default mode within our medical system is to extend the patient’s life, regardless of the quality of life, even for people with advanced dementia. We even subject advanced dementia patients to aggressive end-of-life interventions that inflict needless suffering with little thought.

Dementia patients take comfort from their surroundings; transferring them to a hospital causes agitation, upset and in the most extreme situations, trauma. Yet, nearly six out of 10 nursing home residents with advanced dementia (57%) go to the emergency room at least once in the last month of life.

Furthermore, emergency room physicians are trained to extend life. This reality means you could be subjecting a patient with advanced dementia to cracked ribs as a result of cardiopulmonary resuscitation (CPR), an uncomfortable urinary catheter, or a breathing tube.

A small percentage of people may want these aggressive interventions. However, more than nine out of 10 Americans (92%) agree that a person should “have the legal right to put in writing in advance that they want their caregiver and medical team to stop medical treatments when they are at a specific stage of dementia,” according to a 2018 survey by NORC and the University of Chicago commissioned by my organization.

The way to solve this crisis is to balance our advances in medicine with empathy and respect for the voice and wishes of the individual; to be seen and heard as an individual and not just as a patient.

While every person does have a legal right to forgo treatments, operationalizing this desire is not clear-cut. Dementia is a progressive disease: it’s not always obvious to loved ones the point at which their loved one would want to forgo treatments. Is it when they no longer recognize you, even if they seem otherwise happy? Is it only if they get violent? Or perhaps it takes multiple factors (e.g., can no longer eat, speak, dress themselves or carry on a conversation)?

I encourage all of us to give our loved ones the gift of clarity by filling out the free-of-charge Compassion & Choices dementia values and priorities online tool (values-tool.compassionandchoices.org); this tool helps you create a personalized care plan, based on your selected preferences, that your health care proxy can use to care for you should you get dementia.

While unfortunately there is no cure for dementia, we can take proactive steps to die naturally, potentially with less suffering, through advance care planning.

Complete Article HERE!

For end-stage dementia, Medicare can make hospice harder to access

The number of elderly Americans with the disease is projected to double by 2060. Many will need hospice care but the program will need reform to aid them, experts say

By Emily Harris

Janet Drey knows how hard it is to predict the future, especially the future of someone who lives with dementia. In 2009, a neurologist diagnosed her mother, Jean Bishop, then age 79, with frontotemporal dementia, a disorder that irreversibly damages the front and sides of the brain.

When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live, Drey recalls. The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.

The streamlined access to doctors, nurses, social workers and medications covered by Medicare, quickly became essential to Jean and her husband, and made it possible for them to continue living together on their 40-acre farm in rural Iowa.

But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.

After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.

Without it, Jean’s husband, Leonard Bishop, in his mid-70s at the time, was on his own most days to care for her: lifting her out of bed and placing her before her favorite south-facing window, helping her bathe and eat, and managing her pressure sores.

Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors deemed again that she had less than six months to live. She was re-enrolled. This cycle in and out of hospice occurred three times over three years.

Exhausted, Jean’s husband almost didn’t enroll her the third time, asking Drey and her siblings, “Well, if they’re just going to discharge us again, should I even do this?” Jean died almost exactly six months after her third admission.

Jean’s experience isn’t an outlier.

Based on a recent study, Medicare’s hospice regulations are not working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to her study of 3,837 hospice patients with dementia, about 5 percent are pulled from hospice when their condition seems to have stabilized.

Plus, the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care. “It’s worth asking the question, ‘Should we reevaluate?’ ” Luth says.

The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria. None of their solutions, however, have modified the six-month benchmark — that would require a change in law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.

Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life.

For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.

Today, the average hospice patient is very different. About half have dementia, according to a study published last year. And as Jean’s family experienced, predicting when a patient with dementia has only six months to live is difficult.

“Dementia clearly does not fit the disease trajectory of 70s cancer patients,” says Joan Teno, a health services researcher and former hospice medical director

Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.

But reality can be more complicated, says Krista Harrison, a health services researcher at the University of California at San Francisco. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.

Sometimes, people with dementia can stabilize while they are receiving hospice services, as Jean did. “For those people living at home, there’s not really any other services out there that provide the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF.

So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward.

In the end, Medicare’s penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral quandary,” with the needs of their patients with dementia on one side and Medicare’s six-month regulations on the other.

“We need to update the payment models, and especially hospice, to really reflect this changing disease trajectory of an aging society,” Teno says. “What I’d rather see is some flexibility.”

CMS began to update its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial as much as for care reasons.

The payment reform has Medicare reimburse more (about $200 for routine care) for the first 60 days a person is enrolled in hospice and about $160 after that, until care again intensifies at the end of life. That scheme aligns better with hospice’s U-shaped pattern of costs. Before that, when Medicare paid a flat rate, it was easier for financially driven organizations to enroll patients with unpredictable declines too early and make extra money during their lengthy middle periods.

Another new model started on the first day of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance people over 65 can opt for instead of Medicare. This pilot program is meant to smooth fragmentation in hospice care, previously covered only by Medicare, for the roughly 40 percent of older Americans with Medicare Advantage.

Beginning this year, Medicare also introduced a quality metric that tracks the number of people unenrolled from hospice, giving CMS another way to keep tabs on organizations with too many people unenrolling from hospice.

Without a change in the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services would be added later.

“What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.

Jean Bishop’s family agrees with that.

Several months into 2013, she had qualified again for hospice, her third go-round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after she had been diagnosed with dementia.

Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care, Drey says.

Instead, Jean and her family weathered abrupt gaps at an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.

“He had to work out in his head a scenario so that if something happened and it was a crisis, he knew how he would act,” Drey says.

During the periods that Jean was ineligible for hospice, he knew he would have to handle those crises alone.

Complete Article HERE!