Hospice Care

How to Choose Hospice Care

Important questions to consider before you arrive at a decision

Published in NextAvenue By Liz Seegert

Part of the LIVING TO THE END OF LIFE SPECIAL REPORT

(Editor’s note: This story is part of a special report for The John A. Hartford Foundation.)

Making the decision to transition your loved one to hospice care (for people whose medical conditions mean they are expected to die within six months) is a time of emotional upheaval. It’s often accompanied by confusion, with little understanding of available options or how hospice actually works.

Knowing ahead of time which hospice services are available and the tasks you may be required to take on can help you make the right choices when decision time comes.

Home Hospice, Hospital-Based Care or Stand-Alone Facility

One of the first things you will need to decide is whether to use a home hospice service, hospital-based care or — if available — a stand-alone facility. Nursing homes may also have hospice units or hospice floors.

There are advantages and disadvantages to each, according to Gilbert Oakley, a hospice nurse with Visiting Nurse Service of New York, who’s been providing home hospice care for over a decade.

You’ll have to balance what the person who is dying wants versus what you and the family can realistically provide.

If opting for in-home hospice, a home hospice agency will work with you to determine whether an adequate support system exists. Can the family pitch in with necessary tasks — from administering pain medication to bathing to helping the person toilet? Are you financially prepared to pay for additional help beyond what insurance covers?

Medicare-reimbursed hospices (for people 65 and older) all provide the same basic services. However, there still may be differences between providers that might make one a better choice for you over another, according to the Hospice Foundation of America. The best way to know is to compare. Medicare’s Hospice Compare provides lists and ratings of hospice providers in your community.

Your loved one’s physician, hospital discharge planner or social worker can recommend specific hospice agencies or facilities. Geriatric care managers can also be a good resource. Often a physician has privileges at certain facilities, which may limit choices. Ask these experts questions about their experiences working with the agencies or facilities. Then contact a few for informational appointments.

Hospice Questions to Think About

Credit: Adobe Stock

Many of the questions are the same whether you opt for in-home hospice or facility care. Here are some important questions to consider:

Is the hospice Medicare certified? Most are, and are therefore required to follow Medicare rules and regulations. This is important if your loved one receives the Medicare home hospice benefit.

Is the hospice nationally accredited?  This designation lets you know that the agency or facility meets certain quality standards. While accreditation isn’t required, it can be a clue to the agency’s commitment to quality.

Has the facility or agency been cited in a negative way in the last few years by a state or federal oversight agency? Find out whether any violations or deficiencies been corrected.

Are the hospice’s doctors and nurses certified in palliative care (providing relief from the symptoms and stress of a serious illness)? Experience counts for a lot, but having the credential indicates specialized study in palliative medicine and/or nursing.

How quickly is a plan of care developed for the individual? Some hospices can begin the admissions process and start hospice services within a few hours — even at night or on weekends. Others may only provide intake during normal business hours. Depending on your loved one’s situation, a hospice’s ability to start services quickly might be very important.

How often will a nurse visit my loved one? Medicare only requires one visit every 14 days, but your family member may need more support, according to Perry Farmer, CEO of Crossroads Hospice, a for-profit provider. Find out the answer to this: How often do social workers, care aides, clergy, volunteers or bereavement support counselors come?

What are the options for inpatient care? Patients being cared for at home at some point may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities vary — from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. If possible, visit the facilities (or delegate the task to a trusted family friend) to ensure that they are conveniently located and that you are comfortable with what they offer.

How rapid is crisis response? You want to know who would be available after normal business hours, on weekends and holidays. Ask about the hospice’s average response time and who will make the visit. Some hospices offer limited in-home support on nights and weekends, while others are able to send staff out to a patient’s home no matter when a crisis arises.

What are the expectations for the family’s role in caregiving? See whether the hospice’s expectations are consistent with what the family can provide. Often the care partner has no idea what it’s going to take to be with someone as they die at home — administering medication, helping with bathing and toileting and more. Will the hospice provide training to family caregivers?

How quickly can we expect pain and/or symptoms to be managed? Pain management is a key part of hospice care. Ask about the process if medications don’t seem to sufficiently address pain or symptoms, and how quickly they can be adjusted.

What out-of-pocket expenses should the family anticipate? Original Medicare’s hospice benefit covers everything needed related to the terminal illness, from doctor and nursing care to short term respite and grief counseling. This is true even if the individual chooses to also remain in a Medicare Advantage Plan or other Medicare health plan. There may be a small co-pay for some services like respite care. Medigap and Part D prescription drug plans pay for other care and certain medications.

Taking this all into a account, having a plan of care is vital, according to Oakley. The caretaker(s) need to be aware of what the hospice can or cannot provide and what you or other family members must do.

If your loved one is a veteran, it’s important to select a hospice with the necessary, appropriate experience. Next Avenue published a story detailing how the toll of war on veterans can complicate end-of-life care and present unique needs that must be addressed. You may want to check out the We Honor Veterans program which works with experienced providers of this type of care.

Oakley also recommends finding out how the hospice handles patient and family concerns. Is there a clear process for sharing issues with appropriate hospice staff and ensuring the concerns are addressed, including a process for escalation if the concern is not adequately resolved at lower levels?

Facility-Based Care or Hospice Houses

There are times when patients with very complex symptoms or conditions cannot be cared for at home. Sometimes family members are geographically distant or just don’t have the emotional or physical resources to deal with the situation on a day-to-day basis.

One alternative is a freestanding facility known as a hospice house. Hospice houses offer a more home-like atmosphere than typically found in a hospital or nursing home. They’re designed for short stays and may be a good option when the person requires around-the-clock care. Some hospice house programs mandate that a patient be within a month or two of death, so be sure to ask about admission criteria.

“If you have an opportunity to go with a free-standing hospice house, jump wholeheartedly into it because the environment is created specifically to help people as they die and the family members of people as they die,” said Dr. Rebecca Allen, a geropsychologist and professor of psychology at the University of Alabama’s Research Institute on Aging.

Bereavement Support

Allen recommends asking all hospices about available bereavement services. Grief support can vary widely. It may include individual counseling, support groups, educational materials and outreach letters. If you opt for individual or group support, find out what credentials the session leader has.

What’s Most Important

Think about your general impressions after the initial contact with the provider. What was your reaction to the people you spoke with?

Remember to focus on what is most important to your family — most importantly the person who is dying.

Keeping that at the center will help narrow the field, whether there are three options or 30.

New York-based journalist Liz Seegert has spent more than 30 years reporting and writing about health and general news topics for print, digital and broadcast media. Her primary beats currently include aging, boomers, social determinants of health and health policy. She is topic editor on aging for the Association of Health Care Journalists. Her work has appeared in numerous media outlets, including Consumer Reports, AARP.com, Medical Economics, The Los Angeles Times and The Hartford Courant.

 

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Hospice month celebrates success of nation’s first coordinated care model

Published in The Hill by Edo Banach, Opinion Contributor

While there’s no shortage of partisan disagreements on Capitol Hill, one hopes the combative environment that’s become the norm in Washington might take a brief pause now that midterm elections are behind us. At a time when unity and common ground are sorely needed in our politics and our policymaking, one health care program stands out as a reminder of how bipartisanship works at its best: the Medicare Hospice Benefit.

This extraordinary policy achievement was made possible by lawmakers who put aside their differences in the interest of the Americans they served. Enacted as a demonstration in 1978 and a Medicare benefit in 1982, hospice programs have served millions of Americans and their families with compassionate care to relieve pain, manage symptoms, supported beneficiaries and their family caregivers, and provided bereavement services for individuals following the death of a loved one. The benefit has been invaluable to patients and lifesaving for families. And it never would have happened without lawmakers who were committed to the concept, and to working together.

Democrats, including Sens. John Glenn (Ohio) and Bill Bradley (N.J.), joined with Republican senators like Bob Dole (Kan.) and Chuck Grassley(Iowa) to pass what then-Rep. Leon Panetta (D-Calif.) called a “political miracle.” Sen. John Heinz (R-Pa.) personally collected commitments from 68 senators to pass the Heinz-Dole-Packwood amendment to provide hospice services to terminally ill Medicare patients.

Not only did this bipartisan act show how a diverse group of legislators could come together for the good of the country but the hospice benefit itself has become an example of how our fragmented health care system can – and should – work together for the betterment of patients. As America’s original coordinated care model, hospice brings together a multidisciplinary team of providers to meet all aspects of a dying patient’s physical, spiritual and emotional needs. No other health care sector is required to address all aspects of a patient’s, and their family’s, health and wellbeing.

Those elected to serve in the upcoming Congress should know that hospice is a program that works and a Medicare benefit that matters to their constituents. As seasoned and novice legislators alike consider health policy reforms, they should look to the success of the hospice model as an example of preserving what works, and help expand access to comprehensive, coordinated care and person- and family- centered care to all patients with serious, advanced and life-limiting illness. We should also reinforce the foundation of hospice to ensure access, choice and quality care at the end of life.

Hospice is not only best for patients at the end of life, it is also good for the Medicare program. Study after study show hospice care improves quality of life, delivers on patient and family satisfaction and reduces unnecessary costs for Medicare beneficiaries at the end of life. Thirty-plus years later, hospice is a reminder that there are policy solutions that work for both sides of the aisle and across our nation for all Americans. The fruits of cooperation live on today in a Medicare benefit that serves 1.43 million Americans annually.

It’s sometimes unclear if the dust will ever settle in Washington, and if we’ll ever get back to a place of collegiality and bipartisanship in Congress. If our nation’s remarkable hospice benefit is any indication, great things can certainly happen if it does.

Edo Banach is President and CEO of the National Hospice and Palliative Care Organization (NHPCO).

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NHPCO Highlights Importance of Hospice in Healthcare Since 70s

November begins National Hospice & Palliative Care Month. National Hospice & Palliative Care Organization (NHPCO) writes that hat began as primarily a volunteer-driven, grassroots movement in the 1970’s, is now an integrated part of our nation’s health care delivery system that provides care to more than 1.43 million Medicare beneficiaries and their families every year.

“Enacted as a demonstration in 1978 and a Medicare benefit in 1982 as our nation’s first coordinated care model, hospice programs have served millions of Americans and their families with compassionate care to relieve pain, manage symptoms, support patients and their family caregivers, and provided bereavement services for individuals following the death of a loved one,” said Edo Banach, president and CEO of NHPCO. “The benefit has been invaluable to patients and lifesaving for families.”

NHPCO offers a snapshot of hospice care with representative statistics from the current edition of its report, Facts and Figures: Hospice Care in America (PDF):

NHPCO provides a valuable abundance of resources with data and statistics on hospice. The organization is integral to a broad spectrum of efforts in leading the public’s understanding of hospice and palliative care and advancing the ever more vital role of hospice across the healthcare industry.

In addition, this month honors the home care and hospice community including the millions of nurses, home care aides, therapists, and social workers who make a remarkable difference for the patients and families they serve.

These heroic caregivers play a central role in our health care system and in homes across the nation.
  • In 2018, home care providers will travel about 8 billion miles to deliver the best health care in the world’
  • Ninety percent of Americans want to age in place, and home care is the preferred method of health care delivery among the disabled, elderly, and chronically ill; and
  • Home care provides high-quality, compassionate care to more than 5 million Americans annually.

As we approach the giving season, November is the perfect time to recognize their efforts.

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Mesothelioma Patients to Learn about Hospice

Published in mesothelioma.net

Palliative care experts are using the occasion of Aretha Franklin’s death to urge mesothelioma patients and others diagnosed with terminal illnesses to learn about hospice care and understand that it provides far more than just a “days before” benefit. Franklin’s family announced that she would be entering hospice care just three days before she died, less than the national median length of stay in hospice which is just slightly over three weeks and far less than the amount of time that the service is available. According to palliative care experts, when announcements are made that celebrities are entering hospice just days before their deaths, it confirms the public’s impression that hospice is a place to go before you die, rather than its actual goal of anticipating, preventing and managing patient suffering. The earlier mesothelioma patients enter hospice care, the more benefit they are able to get and the greater the improvement in their quality of life.

People diagnosed with mesothelioma who are considering hospice care would do well to learn about those celebrities who have used it to its fullest: columnist and author Art Buchwald called the five months he was in hospice “the best time of [his] life”, where he was able to continue working, seeing friends and dying with a minimum of discomfort, in a warm and comforting environment. Palliative care professionals are working to spread this news and reframe the narrative about what hospice care from “nothing more we can do” to “living as well as you can for as long as you can” writes Jennifer Moore Ballentine, executive director of the CSU Institute for Palliative Care, based at Cal State San Marcos.

In an article she wrote for the San Diego Union Tribune, Ballentine urges family members and physicians alike to remember that palliative care is available for mesothelioma patients and others with a life expectancy of six months or less who are no longer seeking treatment. Unfortunately, a study in the AMA Journal of Ethics found that specialty physicians are less likely to suggest palliative care than are family and internal medicine clinicians. Much of this is due to the challenge of having difficult conversations.

If you or someone you love has been diagnosed with mesothelioma, you are already aware that the rare form of cancer has no cure. If you would like information on the benefits of palliative care or any other resources to support you as you face this challenging disease, contact the Patient Advocates at Mesothelioma.net today at 1-800-692-8608.

 

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Five Reasons Home Health Care Is on The Rise

Published in Third Age by Tina Marrelli, MSN, MA, RN, FAAN

If you have tried to get care at home for a loved one, it may have been a difficult and time-consuming process. You are not alone. I also had the experience of trying to find care for an older adult family member, and though I have worked in home care for many years, it is not an easy experience. According to the National Association for Home Care and Hospice, around 12 million people in the United States (U.S.) receive home health care from more than 33,000 provider organizations. As the population continues to grow, that number will likely more than double by 2050, increasing to 27 million.

Here are five factors contributing to the complexity.

*Aging of the population. This has been referred to as the graying tsunami, and for good reason. The projection that roughly 10,000 baby boomers will turn 65 each day, and that this trend will continue for the next 19 years, is staggering, no matter how many times it is repeated.  In the U.S., one of the fastest growing segments are those people who are age 85 or older. Called the “oldest old” by the National Institutes on Aging (NIA), they constitute the most quickly growing segment of the U.S. population. And now think about how many people you know who are in their 90s and maybe have passed the 100 mark? My sweet father-in-law moved in to our home when he was 93 and lived with us for three years – until he died at our home with care and hospice support. This scenario is not unusual. And think about the health implications in the oldest old with the frailty and other challenges that come from living to that age.

*Home care means many things. There are home health agencies certified by Medicare and Medicaid. These are agencies that provide what are called “intermittent” visits by nurses, aides, therapists and/or social workers. These services are provided under a physician-directed plan of care. There are specific rules related to coverage and care provided and like any medical insurance program, there are covered and non-covered services. There are also private duty organizations that provide services, such as a “shift” of 4 or 8 hours. In this instance, a family may contact a number of organizations to obtain an aide to be with and care for a family member who might have personal care needs, such as a need for assistance with bathing, dressing and/or meal preparation.  There are also home care services that are provided to very ill or technology-dependent people at home, and they may need specialized nursing care, such as that provided by a registered nurse.

*Lack of enough trained caregivers. According to the Bureau of Labor Statistics, (BLS) home health aides and personal care aides are two of the fastest growing jobs. In fact, according to the BLS, their job outlook, defined as the projected numeric change in employment from 2016-2026, is 41 percent; which is much faster than average. The employment increase is estimated at 1,208,800 more aides!  Varying factors contribute to organizations having trouble finding and then retaining more aides.

*Chronic conditions and the growing complexity of care. According to the Centers for Medicare and Medicaid Services, it is estimated that 117 million adults have one or more chronic health conditions, and one in four adults have two or more chronic health conditions. These conditions can include cardiovascular (heart) conditions, such as heart failure, respiratory (breathing) conditions such as COPD (chronic obstructive pulmonary disease) or asthma, arthritis, cancer, depression, diabetes and more. Such chronic diseases also demand trained caregivers to help people better manage their health conditions.

*People wanting to age in place. This may be their home or may be an assisted living residence. It was not so long ago that people were cared for primarily at home and oftentimes died at home. Many patients receive care in their homes through the Medicare hospice benefit. In fact, most hospice care is provided in the home setting. Wanting to age in place is a great goal, although it may not always be realistic, depending on the person, the care needs and safety concerns.

So all these kinds of care at home are home care and are increasing the need for these specialized services. The term “home” becomes flexible as people seek the “best” situation for themselves and their loved ones to age in place. There is no question that home care is more complicated than people think. When finding care for yourself or a loved one, ask for (and check) references, read reviews and do your homework. Some of the best knowledge is local, so ask your neighbors and friends who they have worked with when care was needed for their family member.

Tina Marrelli, MSN, MA, RN, FAAN is the author of the Handbook of Home Health Standards: Quality, Documentation, and Reimbursement (6th edition, 2018) and A Guide for Caregiving: What’s Next? Planning for Safety, Quality, and Compassionate Care for Your Loved One and Yourself. 

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Hospice is here for patients and families

In the health care industry, awareness for hospice care continues to grow as more patients and families turn to hospice and understand the care hospice provides.

Although myths about hospice are that “it is only for cancer patients”, “hospice is giving up” or “too expensive, indeed the opposite is true.

Hospice illustrates that it is a vital part of end-of-life care and plays a significant role in health care in communities.

Here are some facts to know about hospice:

 

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Those in hospice need additional care

Published in Picayune Item by Leah McEwen

Those who are in hospice care often have many needs, but don’t always have access to the assistance required.

One of my grandmothers developed Alzheimer’s about ten years ago and lived with it for several years. She was in her 60s when she received the diagnosis. While the onset of the illness was slow, when it worsened, it became unmanageable.

She forgot who we were, disappeared from her home several times and eventually became a danger to herself. As her condition worsened, she also developed several other illnesses, which made taking care of her impossible for my grandfather. Thankfully, my family was able to pay for outside help to provide the care she needed until she passed away.

Unfortunately, this isn’t the case for everyone. Many elderly adults don’t have family to care for them, and do not have the funds to pay for outside help such as a nursing facility or in-house nurse.

Many hospice services fill this gap by providing care that is paid for through donations, or government programs like Medicare and Medicaid. There are also non-profit organizations that can provide everyday necessities like groceries.

I recently met a man in his early nineties who had saved enough money to pay for his livelihood until he reached 85-years-old. He said he hadn’t expected to live past that point, but when he did, he found himself penniless and with no one to turn to.

With the help of local volunteers and nonprofit organizations who discovered his need, he was relocated to a better home, his utilities were paid and he was provided with groceries and medical coverage.

Organizations that help elderly adults and hospice patients in need improve the quality of life for patients and their families.

 

 

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How AI could improve the quality of end-of-life care

Published in venturebeat.com by Scott Bay

The means to predict mortality using artificial intelligence could be a transformative factor in the future of palliative health care. While this topic may seem a bit morbid, AI has the potential to help medical care providers and doctors significantly improve the delivery of patient care in hospice situations.

Getting the right kind of treatment at the end-of-life stage is more important than many assume. Not enough treatment — or even inaccurate treatment — can provide a painful experience for patients, and overcare may result in hundreds of thousands of dollars in unnecessary medical bills, even if the patient is covered by insurance. While it’s crucial to select the proper medical coverage that includes hospice care regardless of the situation — especially for people over 65 or older, because there are specific plans for specific purposes to help with these medical costs — AI advances may help patients and physicians determine illness sooner to prepare for end-of-life costs and treatments before it’s too late.

A recent study in the journal NPJ Digital Medicine shows that technology will soon allow physicians to improve the timing and delivery of patient care. Researchers used AI to scan electronic health records (EHR) and notes doctors left in patient records to detect potential clinical problems and health risks. The AI system predicted patient mortality rate and final diagnoses more accurately and quickly than physicians. So how does it work?

Using deep learning for patient insight

In the NPJ study, researchers fed almost 48 billion data points (including doctors’ patient notes, patient demographics, procedures, medications, lab results, and vital signs) into a deep learning model. This model analyzed the data and predicted, with 90 percent accuracy, medical issues like mortality rates, longer hospital stay lengths, unplanned readmissions, and patients’ final diagnoses. When compared to traditional predictive models, the deep learning model was more accurate and scalable.

For example, a woman in the final stages of breast cancer came to a city hospital with fluid already in her lungs. Two doctors reviewed her case, and she received a radiology scan. The hospital’s traditional predictive model reviewed her chart and estimated there was a 9.3 percent chance she would die in-hospital. A new type of algorithm (created by Google) reviewed the woman’s chart — about 175,639 data points — and estimated her death risk at an actual 19.9 percent. The patient passed away in a matter of days, proving the algorithm model to be more accurate.

Compared to the traditional method, the deep learning model was 10 percent more accurate. The system’s ability to sift through data that was previously unavailable helped it provide a more accurate mortality estimation. Rather than looking at a few risk factors, the model looks at the patient’s entire electronic health record (EHR), including notes buried deep in PDFs or scribbled on old charts. Using this process, in the future, may enable doctors to save lives and provide better patient care.

Saving lives and money

So what can we do with this information? With more accurate predictions of a patient’s mortality, hospitals and doctors can use better estimations to adjust treatment plans, prioritize patient care, and predict negative outcomes before they occur. In addition to this, health care workers wouldn’t have to spend as much time manipulating patient data into a standardized, legible format.

For example, a report by Futurism notes that Ultromics, an AI diagnostics system developed in England, can diagnose heart disease more accurately than doctors. The same report notes that a startup bot called Optellum is working on an AI system that can diagnose lung cancer by analyzing clumps of cells found in scans. This bot shows promise to diagnose 4,000 additional lung cancer cases per year and at an earlier rate than doctors are currently capable of diagnosing.

Not only can these AI diagnostics systems save lives, but they can also help hospitals save money. In an interview for Futurism‘s report, Timor Kadir, Optellum’s chief science and technology officer, stated that the AI system could cut health care industry costs by $13.5 billion. Sir John Bell, chair of the U.K.’s Office for Strategic Coordination of Health Research, added, “There is about $2.97 billion spent on pathology services in the National Health Service. You may be able to reduce that by 50 percent.”

Predicting death for better care

Current research shows that less than half of the eight percent of patients who need palliative care actually receive it. There are times when doctors make inaccurate or overly optimistic prognoses about a patient. Dr. Kenneth Jung, a research scientist at Stanford University School of Medicine, told NBC, “Doctors may not make the referral [for palliative care] simply because they’re so focused on managing their patients’ health issues that palliative care doesn’t cross their minds.”

Failing to identify patients who need palliative care can have devastating consequences. If the patient’s health suddenly declines, they may spend their final days receiving aggressive medical treatments in hopes of extending their lives by a few weeks. However, studies have shown that approximately 80 percent of Americans would prefer to die at home, rather than in a hospital. Sadly, the report also notes that 60 percent of these people die in acute care hospitals.

It’s in these cases that AI can help identify patients who are critically ill and might benefit from end-of-life care. Early identification of these patients can help them get the treatment they need sooner. And it may allow patients to remain at home, instead of in the hospital, during their final days.

While some may wonder about the future of AI in health care, the purpose of AI systems is to play a supporting role in the health care industry. These systems will serve as a powerful tool that will help physicians and other health care professionals provide higher quality care and offer palliative treatments in a timely manner.

Scott Bay is a writer who covers AI and Internet of Things for PC Mag, Wired, and Men’s Health.

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How the Hospice Benefit Could Be Redefined

Published in Home Health Care News By Amy Baxter

As recent changes across the health care system over the last few years indicate that person-centered, interdisciplinary care can improve clinical outcomes, boost patient satisfaction and potentially lower overall costs, hospice care could see an evolution ahead.

Hospice has become known as the first truly interdisciplinary benefit, bringing together many types of care under one roof. As more alternative payment models (APMs), managed care organizations and Medicare Advantage plans seek more flexibility in caring for patients with a person-centered approach, hospice is similarly looking for a way into these increasingly popular care models.

Home Health Care News caught up with Edo Banach, CEO of the National Hospice and Palliative Care Organization (NHPCO), to discover how the association is helping push the boundaries of hospice care with a new advertising campaign aimed at consumers and lawmakers, and efforts to redefine the benefit. Banach, who has been at the helm of NHPCO for more than a year, has an extensive background of working closely with the regulations and innovations departments at the Centers for Medicare & Medicaid Services (CMS) before the hospice industry “came calling.”

Here’s where Banach believes hospice is going.

Overall, what are the biggest changes you’ve seen during your career in health care?

Banach: One thing that is positive is when I started working in health care 16 years ago, it was really hard. What I’ve seen is, back then, managed care companies weren’t falling all over themselves to manage coordinated care. You had a really more siloed system than you have now, pre-Affordable Care Act (ACA), pre-[Medicare] Part D.

Managed care companies can now pay for less medical benefits [by supplementing with non-medical benefits]. We’re getting more integrated. We are moving in the right direction. I want to make sure that the integration and technology is used as a tool to help supplement real, compassionate interdisciplinary care, not one-step-removed care.

So, you talk about hospice being a movement. Where do you see hospice moving to?

One way we see it moving is upstream, but it is an absolute shame that people have to give up so-called curative care in order to get palliative care, hospice. It shouldn’t be a choice. You should be able to get both.

I think when people get both, they often see the value of palliative care. There is a demonstration now called the Care Choices model, which is testing out if curative and palliative care saves money or not, [if it] is an improvement on quality or not, and that will be very helpful and telling.

My goal in the next couple years, if not the next couple months, is to create a pre-hospice palliative care benefit that will allow folks to benefit from person-centered interdisciplinary care, that you see in hospice, earlier. When they have a serious illness, [palliative care is] a pathway and a glide path to receive the full-on hospice benefit that they will eventually receive.

Most people are on hospice now for only a couple of weeks, if not a couple days.

Just like former First Lady Barbara Bush.

Yes, she took comfort care and passed away two days later. And I think that’s not enough time for the system of care to actually have the impact that it needs to have.

Part of it is the choice that people make. Do you want curative care or do you want palliative care? You should be able to get both, and I think that’s crucial. That’s something that we will get to.

What are your other top priorities?

The other thing is about the length [of stay]. The problem with Medicare fee-for-service [FFS] now is these black lines—if you’re on one side, it is OK, and on the other side it’s not. For home health it’s skilled, homebound, these are the things we talk about and auditors look at a lot. In hospice, it’s [about if] you have a prognosis of less than six months and a need for hospice care.

That six-month limitation is treated as a clinical issue. It’s not a clinical issue; it’s a budgetary issue. It doesn’t make sense anymore. Ideally, in a couple years we will have much more of a glide-path between [when a person is] going along swimmingly and getting whatever is medically necessary under Medicare and receiving interdisciplinary person-centered care under hospice.

And my hope is that interdisciplinary person-centered care actually becomes the rule rather than the exception. That’s how this movement will have worked. I don’t just want to reshape the hospice benefit, I want to reshape health care.

Seems like a big uphill battle to me, as new Medicare benefits really come along quite infrequently.

Yes and no. For this, it’s not actually as radical as it sounds. This is an APM that I expect will actually happen. There’s interest in it, we’ve had meetings about it. I am hopeful this is something that can be done.

You’re right, Medicare benefits come infrequently. But we are not talking about a new benefit here. We’re talking about flexibility to provide more person-centered care that is not the poked-and-prodded variety. And that’s exactly what is happening over at ACOs and in Medicare Advantage land. As that is happening and plans can now pay for supports and services, it will seem even less logical for FFS Medicare to be in this box. So I think it is imminent.

 

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How will population ageing affect future end of life care?

By Anna Bone

Increasing population ageing means that deaths worldwide are expected to rise by 13 million to 70 million per year in the next 15 years. As a result, there is an urgent need to plan ahead to ensure we meet the growing end of life care needs of our population in the future.

Understanding where people die, and how this could change in the future, is vital to ensuring that health services are equipped to support people’s needs and preferences at the end of life. As researchers at the Cicely Saunders Institute, King’s College London, we investigated trends in place of death in England and Wales, and found that deaths occurring in care homes could more than double in the next 25 years if recent trends continue.

Using official records on over five and a half million deaths, as well as population forecasts, we estimated the number of people who will die in a range of different settings in years to come. The intention behind this study is that it will help to guide future planning of health and social care. From 2004 to 2014, the proportion of deaths occurring in care homes increased from 17% to 21%, with numbers rising from 85,000 to 106,000 per year. If this trend continues, the number of people dying in care homes will double to over 220,000 per year by 2040, and care homes will overtake hospitals as the most common place to die. Home deaths are also projected to increase over this period to over 216,000 deaths a year. Together, this means that deaths in the community are expected to account for over two-thirds of all deaths by 2040.

We also know that, increasingly, people are living and dying with multiple illnesses and frailty, which adds complexity to their care needs. The rising number of people with complex illness in the community is a challenge for end of life care. A recent study has shown that palliative care needs are expected to increase by 42% by the year 2040. We need greater integration of specialist palliative care into primary care services, as well as more training in palliative care for general health professionals, to ensure that those with palliative care needs can access services they require.

The projected rise of deaths in care homes and in peoples’ own homes is striking. We must ask care home and community services whether they are equipped to both support such an increase in demand and provide high quality end of life care. How can we provide the workforce needed to care for this growing patient group? To enable people to die in their preferred place in future, we need to ensure adequate bed capacity, resources, and training of staff in palliative and end of life care in all care homes in the country. These projections warn of the urgent need to invest more in care homes and community health services. Without this investment, people are likely to seek help from hospitals, which puts pressure on an already strained system and is not where most people would prefer to be at the end of their lives.

The time has come to test new approaches to care in order to ensure that we address this growing need of our population in the years to come. There are promising examples of innovations in care to increase the reach of palliative care services in community settings, for example project ECHO, which facilitates knowledge-sharing between specialist palliative care services, such as hospices, and general health care professionals such as those in care homes. In an era of increasing need alongside constrained health and social care budgets, developing and testing innovative ways to provide high quality care with minimal resources is imperative.

In the words of Cicely Saunders, the founder of the modern hospice movement, “how people die remains in the memory of those who live on.”The inevitable population changes described here will affect all of us, directly or indirectly, in the years to come. It is time for us as a society to have an open discussion about how we want health services to be delivered to people towards the end of life. Crucially, we need better evidence on how we can best support a growing number of older people as they reach the end of their lives.

Anna Bone is a PhD Training Fellow at the Cicely Saunders Institute, King’s College London. The themes from this blog post come from The Changing Face of Volunteering in Hospice and Palliative Care, published by Oxford University Press.

 

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