Hospice Care

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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Tara Graham: When the unexpected happens, what’s your plan?

Editor’s note: This commentary is by Tara Graham, MSW, LICSW, LNHA, who is executive director of the Hospice and Palliative Care Program of the VNA of Chittenden and Grand Isle Counties, Vermont’s oldest and largest non-profit home health and hospice agency.

It’s National Healthcare Decisions Week. Who’s Your Person? What’s Your Plan?

It’s a simple yet vitally important question all Vermonters over 18 should be able to answer. If you are unable to speak for yourself due to incapacitating illness or injury, who will speak for you? Who will ensure the treatment you receive – or decline – reflects your beliefs and preferences?

In my work as Executive Director of the Hospice and Palliative Care Program at the VNA of Chittenden and Grand Isle Counties, I engage with individuals and families facing life-limiting illness every day. Conversations about wishes, values and preferences at the end of life are a necessary part of the hospice philosophy of care. These conversations can be at once routine and profound. The process of dying is a daily part of my life and I realize that this is not true for most people – it isn’t even consistent among those closest to me personally.

For many, talking about debilitating illness or injury and death is completely foreign and something to be avoided. It’s uncomfortable, some may even say a little morbid. But here’s the thing: I believe it is a person’s innate right to choose the direction of their lives until the moment he or she dies, regardless of their ability to communicate their needs. We all hope to never have a serious car accident, but we purchase car insurance so we are prepared should the unexpected happen. Advance care planning – making your healthcare wishes known – is like an insurance policy against unwanted medical treatment and interventions during times of tremendous stress and uncertainty.

Despite recent gains in public awareness of the need for advance care planning, studies indicate the majority of Vermonters, and in fact most Americans, have not exercised their right to make decisions about their healthcare in the event they cannot speak for themselves. By normalizing conversations around advance care planning, and making our wishes known to loved ones and our healthcare providers, we can all be better prepared to deal with the unexpected.

I have had the privilege of hearing about people’s fears throughout my career as a social worker. Over and over again, the theme of losing capacity or loss of control is consistently at the top. Even my dad, when faced with a terminal diagnosis of glioblastoma, who knew intuitively when he no longer wanted to pursue curative treatment, so he could focus instead on quality of life for his remaining days, found himself having to explain his decision to family and friends. My dad was able to make his wishes known. Thankfully, he also had an advance directive in place in the event he became unable to speak for himself and my mother and sisters needed to make healthcare decisions for him. He gave us the gift of certainty.

Imagine if we could chart a path, lay out scenarios and share with those that love us about how to represent us at a time when we might not be able to represent ourselves? This is a very real, obtainable possibility.

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Home Health and Hospice Admissions, Utilization Trending Up

Author: Amy Baxter, Home Health Care News

Home health care and hospice admissions and utilization are both on the rise, according to the latest data report from Excel Health.

Hospice admissions grew 4.6% from the third quarter of 2016 to the third quarter of 2017, rising to 313,500, according to the report, which is based on 100% of the most recent Medicare Part A and B claims data. Excel Health offers on-demand, cloud-based data solutions and has robust medical databases.

Over the same year-to-year time period, hospice utilization grew, with 48.8% in the third quarter of 2017 being the highest utilization to date, and 1.7 percentage points greater than in the third quarter of 2016. Utilization is measured as the number of decedents that had hospice care over the number of total decedents.

Hospice admissions grew year over year in all states except five—Maine, North Carolina, New Jersey, New York and Iowa. Wyoming experienced the highest admissions growth, rising 19.2% year over year.

Nearly all states also had higher utilization rates, with only two states—North Carolina and Arkansas—seeing a slight drop in utilization year over year.

Home health care admissions grew 0.7% in the second quarter of 2017 from the same three months in 2016, reversing a negative trend seen over the previous few quarters. Fourteen states saw a decline in admissions year over year. Wyoming had the highest growth in admissions—13.2% year over year.

Utilization remained near its constant rate, around 1.6% for all Medicare beneficiaries in the second quarter 2017, according to the report. All states saw higher utilization of home health care services, with both Massachusetts and Mississippi growing 2.4% year over year.

As more baby boomers age into Medicare eligibility, the proportionate demand for home health care has dropped, as the average age of Medicare beneficiaries declines. Demand will likely rise again as a proportion of the Medicare population as baby boomers age.

The growth of home health care and hospice services is not totally surprising, as 10,000 baby boomers turn 65 every day.

From the third quarter of 2016 to the same period in 2017, the total number of Medicare beneficiaries rose 2.3%, from 56.1 million to 57.5 million, according to the report. And the growth of beneficiaries also means spending will rise. By 2027, the rate of Medicare spending as a percentage of total federal spending is expected to rise to 17.5%.

 

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The Other Side of the Conversation

Author: Christopher M. Thompson, MD, HMDC

This article originally was published in Winter 2017 NewsLine.

In this post, a physician connects his personal and professional caregiver roles.

As palliative care providers, we spend our careers talking about end-of-life care and helping families make difficult choices about life and death. Have you ever been on the other side of the conversation, answering questions and making decisions for your own loved ones? I have cared for thousands of patients at the end of life, but recently I’ve been on the other side of that conversation – twice.

My first conversation began with “Momma,” my wife’s 91-year-old paternal grandmother. Her decline started with a kidney stone, which then led to urinary tract infections and tremendous pain. Momma made the decision to have lithotripsy. During the procedure, she had respiratory distress and required intubation. Her heart was not strong enough to tolerate this “routine” procedure. She developed right-sided heart failure and pulmonary edema. Doctors were able to extubate her; however, she continued to have more respiratory distress. She was not doing well. They placed her on Bi-pap but she did not tolerate this. She was in the hospital, agitated, dyspneic, and did not want to be re-intubated.

So now what? Our family had to begin those difficult discussions. Do we continue to push aggressive care? Momma told the family she was tired and ready to die. It was hard for our family to acknowledge what this meant even knowing her wishes. Added to that, it was two weeks before Christmas and my family lived six hours away from Momma. We decided my wife and our three-year-old daughter would travel to Georgia while I stayed home to work. I wanted my wife to be there for the conversation in person and to see her grandmother, as I knew this might be her final days on earth. After discussing options, the family agreed to inpatient hospice care.

I was too involved with work and like many times before chose work over family. My wife was at Momma’s bedside for less than 24 hours when she called me telling me that Momma was asking for me, “The Doctor.” I pulled myself away from work in the middle of the day and headed to Georgia.

I was now being asked medical questions as well as “what about Christmas?”, “what do we tell the great-grandchildren?”, and “is this the right thing to do?” I did not have answers. I had memories and emotions for this woman I loved; I did not want to think, “Momma is dying.”

All the signs were there; it was her time to die. The family began the journey with Momma. I have worked in three different inpatient hospice facilities. It’s easier for me to study the staff, their workflow, their EMR, their census, their medical director – this is what I know. My wife reminded me that this time, I was there for Momma and our family. I was not “The Doctor” now; I was family.

Staff managed Momma’s symptoms quickly and she had two good days talking and interacting. We had made the right choice, albeit not an easy one. Long days and nights at the hospice home wear a family down. Hospice staff participate in these experiences daily. We think how hard it must be for the patients and families. When you are on the other side, you feel the sorrow and you learn a lot about the value of hospice care.

Momma died peacefully four days later. We returned home to North Carolina, only to receive a phone call that “Granny” was in the hospital. Granny was my wife’s 78-year-old maternal grandmother. She had Alzheimer’s disease, had fallen at home, and had developed altered mental status. She was not eating, she had a UTI, and a CT scan showed a small hemorrhage in the frontal lobe. Granny was agitated, not eating, and declining. So now what?

Just three weeks earlier we had lost Momma. Now our family was deciding on inpatient hospice for Granny.
My wife, daughter, and I packed the car and headed for Florida. I took the time from work, but I was still on call and was on the phone, giving orders the entire trip. Once again, it was easier for me to do my work as a hospice physician than confront what I had no control over. We were losing both our grandmothers within three weeks.

As we arrived in the middle of the night, we received a call letting us know Granny died. She had declined quickly. That was truly a blessing. After all the heartbreak and tears, we went to Granny’s house and celebrated her life. This is what she would have wanted.

Those two experiences remind me how hard end-of-life conversations are for families. We as palliative care providers need to remember it is different when there are memories and emotions involved. No matter how informed our families are, these decisions are not easy. And, it’s hard being on the other side. We are no longer medical professionals, we are family. All our medical training leaves our mind and we become an emotional basket case. We find it hard to think straight or make rational decisions. It’s difficult living with the decisions and through those choices.

I’m 40 years old, my parents are approaching retirement, and my grandparents are dying. I have friends who are struggling with acute and chronic illnesses. All of this has made me a better hospice and palliative care physician and I’m glad I can reflect on my training and life experiences to help my patients and families. I make the conversations personal and emotional. I have more empathy during family meetings. I think this adds a new dimension to the work I do, the work I’m proud to do.

These two experiences brought our family closer together and I’m grateful I could help in the decision-making process. My family saw firsthand how our jobs as hospice and palliative care providers are intensely emotional. We all need to realize the impact we have on the families we care for, how a well-trained hospice and palliative care staff can have an impact on a family.

During our trip home from Florida, my wife looked at me and asked, “How do you do this day after day? I am proud of you and now understand your job even more and how rewarding it must be.”

———–

Christopher M. Thompson, MD, HMDC, assisted in developing the palliative medicine programs at two hospitals prior to joining Transitions LifeCare as Medical Director for Transitions Kids, Transitions LifeCare’s pediatric hospice program. Dr. Thompson is board certified in Family Medicine. After completing his Fellowship, Dr. Thompson became board certified in Hospice and Palliative Medicine with the added qualification of Hospice Medical Director Certification.
 

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March Celebrates Social Work

Professionals who care. Helping improve people’s lives is at the heart of social work

In honor of National Social Work Month in March, below are facts about social workers from the National Association of Social Workers:

About Social Workers

Social workers seek to improve the lives of others.

Social work is a profession for those with a strong desire to help improve people’s lives. Social workers assist people by helping them cope with issues in their everyday lives, deal with their relationships, and solve personal and family problems.

According to the Bureau of Labor Statistics, there were almost 650,000 social workers in the United States in 2014. With an expected growth in jobs of 12 percent by 2024, social work is one of the fastest growing professions in the United States.

Who are social workers?

Social work is a profession for those with a strong desire to help improve people’s lives. Social workers assist people by helping them cope with issues in their everyday lives, deal with their relationships, and solve personal and family problems.

Some social workers help clients who face a disability or a life-threatening disease or a social problem, such as inadequate housing, unemployment, or substance abuse. Social workers also assist families that have serious domestic conflicts, sometimes involving child or spousal abuse.

Some social workers conduct research, advocate for improved services, engage in systems design or are involved in planning or policy development. Many social workers specialize in serving a particular population or working in a specific setting.

What do social workers do?

Who employs social workers?

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Resourceful Books

Communication in palliative care [reading list]

Palliative care is now a cemented service offered by health care services globally, and in the United Kingdom the hospice care sector provides support to 200,000 people each year. The care given to the terminally ill, as well as their family and friends is vital in supporting individuals through what is, for most, the most challenging time of their lives. This care ranges from clinical medical practice to spiritual support, and aims to put individuals in as much comfort as is possible. People often find it difficult to discuss death and the topic is still widely considered to be taboo. This is in direct conflict with the principles of palliative care, which encourages active and clear communication from all those involved in the process.

To convey the importance of communication in effective palliative care, and encourage an open dialogue on the subject of death and dying, we have collated a reading list on these topics below.

Communicating with children when a parent is dying” by Cynthia W. Moore and Paula K. Rauch from the Oxford Textbook Communication in Oncology and Palliative Care (2017)

This chapter provides suggestions for clinicians on supporting parents’ open communication with their children, drawing on the authors’ extensive clinical experience of providing parent guidance to patients.

Discontinuation of Life-Sustaining Therapies” by Kathy Plakovic from the Clinical Pocket Guide to Advance Practice Palliative Nursing (2017)

The authors outline how withholding and/or withdrawing life sustaining medicines are processes that fundamentally rest on the shared decision-making of carer, patient, and family.

Defining a ‘good’ death” by Karen E. Steinhauser and James A. Tulsk from the Oxford Textbook of Palliative Medicine 5th Edition (2015)

This chapter explores the reappearance within the last 40 years of the definition of a ‘good death’ in medical contexts, and what the clinical implications of using the terminology ‘good death’ may be for practitioners and patients alike.

The doctor’s room by Hush Naidoo. CC0 public domain via Unsplash.

Truth telling and consent by Linda L. Emanuel and Rebecca Johnson from the Oxford Textbook of Palliative Medicine 5th Edition (2015)

This chapter focuses on the role of truth-telling in therapeutic relationships and the ways in which effective communication can maintain hopes and deliver information sufficient for informed consent at the same time in palliative care.

Cicely Saunders and her early associates: A kaleidoscope of effects” by David Clark from To Comfort Always: A History of Palliative Medicine Since the Nineteenth Century (2016)

David Clark looks at the specific contributions made by Dr Cicely Saunders and her colleagues to modern palliative care.

Talking with patients” by Catherine Proot and Michael Yorke from Life to be Lived: Challenges and Choices for Patients and Carers in Life-threatening Illnesses (2014)

The authors discuss how talking with patients stands at the heart of the patient-carer relationship. This communication involves providing information, but also listening, as patients must feel that their concerns and feelings are understood.

Talking and Working with Dying Patient: True Grief and Loss” by Lisa Humphrey from The Oxford  Handbook of Ethics at the End of Life (2016)

A palliative care and hospice physician reflects on the lessons learnt about grief and dying over the course of her training and career.

Think adult—think child! Why should staff caring for dying adults ask what the death means for children in the family?” from the British Medical Bulletin

This article discusses the lack of awareness on the effect death has on children and how carers looking after ill parents should begin to consider the short and long term effects on children and offer appropriate support as part of their duty of care.

Featured image credit: Gress, park bench by Olesya Grichina. CC0 Public Domain via Unsplash.

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Shedding New Light On Hospice Care: No Need To Wait For The ‘Brink Of Death’

Nurse checking a patient's blood pressure

The Biggest Misperception

A few weeks ago, Kathy Brandt’s 86-year-old mother was hospitalized in Florida after a fall. After rushing to her side, Brandt asked for a consult with a palliative care nurse.

“I wanted someone to make sure my mother was on the right medications,” Brandt said.

For all her expertise — Brandt advises end-of-life organizations across the country — she was taken aback when the nurse suggested hospice care for her mother, who has advanced chronic obstructive pulmonary disease, kidney disease and a rapid, irregular heartbeat.

“I was like — really?” Brandt remembered saying, struggling with shock.

It’s a common reaction. Although hospices now serve more than 1.4 million people a year, this specialized type of care, meant for people with six months or less to live, continues to evoke resistance, fear and misunderstanding.

“The biggest misperception about hospice is that it’s ‘brink-of-death care,’” said Patricia Mehnert, a longtime hospice nurse and interim chief executive officer of TRU Community Care, the first hospice in Colorado.

In fact, hospice care often makes a considerable difference for those with months to live. “When someone is further out from death, we can really focus on enhancing their quality of life,” said Rachel Behrendt, senior vice president of Hospice of the Valley, which serves the Phoenix metropolitan area.

New research confirms that hospice patients report better pain control, more satisfaction with their care and fewer deaths in the hospital or intensive care units than other people with similarly short life expectancies.

What should seniors and their families, the largest users of hospice care, expect? It’s fairly well understood that patients forgo curative therapies in favor of comfort care when they enter hospice. Here are additional features:

Four Levels Of Care

Hospice providers are required to offer routine care in patients’ homes (this includes seniors who reside in assisted living or nursing homes); continuous care at home for people with out-of-control symptoms such as pain or breathing problems; inpatient respite for families that need a break from caring for a loved one; and general inpatient care for medical crises that can’t be handled in any other setting.

With continuous care, a nurse must be on-site in the home for at least eight hours a day, helping to bring symptoms under control. Usually, this will happen in one to three days. Respite care has a maximum limit of five days.

Some hospices have their own general inpatient facilities and “it’s a common misconception that patients are sent to inpatient hospice to die,” said Jean Cohn, clinical manager at Montgomery Hospice’s inpatient facility, Casey House. “In fact, we’re frequently fine-tuning patients’ regimens in inpatient hospice and sending them back home.”

Intermittent Care At Home

Routine care at home is by far the most common service, accounting for about 94 percent of hospice care, according to the latest report from the National Hospice and Palliative Care Organization.

While services vary depending on a patient’s needs, home care typically involves at least one weekly visit from a nurse and a couple of visits from aides for up to 90 minutes. Also, a volunteer may visit, if a patient and family so choose, and social workers and chaplains are available to address practical and spiritual concerns.

Hospices will provide all medications needed to address the underlying illness that is expected to cause the patient’s death, as well as medical equipment such as hospital beds, commodes, wheelchairs, walkers and oxygen. Typically, there is no charge for such gear, although a copay of up to $5 per prescription is allowed.

What families and patients often don’t realize: Hospice staff will not be in the home every day, around the clock. “Many people think that hospice will be there all the time, but it doesn’t work that way,” Brandt said. “The family is still the front line for providing day-to-day care.”

In assisted living, patients or their families may have to hire nursing assistants or companions to provide supplemental care, since hands-on help is limited. In nursing homes, aides may visit less often, since more hands-on help is available on-site.

Self-Referrals Are Allowed

Anyone can ask for a consultation with a hospice. “We get many self-referrals, as well as referrals from family and friends,” said Behrendt of Hospice of the Valley. Usually, a nurse will go out and do a preliminary assessment to determine if a person would qualify for hospice services.

To be admitted, two physicians — the patient’s primary care physician and the hospice physician — need to certify that the person’s life expectancy is six months or less, based on the anticipated trajectory of the patient’s underlying illness. And recertification will be required at regular intervals.

You Choose Your Physician

You have a right to keep your primary care physician or you can choose to have a hospice physician be in charge of your medical care.

At JourneyCare, the largest hospice in Illinois, “we prefer that the patient keeps their primary care physician because that physician knows them best,” said Dr. Mark Grzeskowiak, vice president of medical services.

These arrangements require close collaboration. For instance, if a nurse observes that a patient with heart failure is experiencing increased shortness of breath, JourneyCare staff will get in touch with that patient’s primary care physician. The physician is responsible for altering the treatment plan; the hospice is responsible for implementing that plan and giving clear instructions to the patient and family.

Concerns About Medications

“There’s a misconception that you’re going to be medicated to a highly sedated state in hospice,” said Dr. Christopher Kerr, chief executive officer and chief medical officer for Hospice Buffalo Inc. in upstate New York. “The reality is our primary goal is to increase quality wakefulness. Managing these medications is an art and we’re good at it.”

Family caregivers are on the front line since they’re responsible for administering pain medications such as morphine. “Absolutely, there’s a great deal of fear and anxiety around all the issues associated with giving medications,” said Cohn of Montgomery Hospice. “We try to reassure caregivers that the doses we start with are very small and we’ll see how the patient reacts and go slowly and deliberately from there.”

Because most hospice stays are short — the median length is only 17 days — and because the diversion of painkillers from people’s homes is a risk, doctors have begun writing prescriptions for a week or two at a time, said Judi Lund Person, vice president of regulatory and compliance for the National Hospice and Palliative Care Organization. If concerns exist, hospices can have a lockbox for medications sent to the home.

Discharges Are Possible

Estimating when someone is going to die is an art, not a science, and each year hundreds of thousands of hospice patients end up living longer than doctors anticipated.

If physicians can document continued decline in these patients — for instance, worsening pain or a noticeable advance in their underlying illness — they might be able to recertify them for ongoing hospice care. But if the patient is considered stable, they’ll be discharged, various experts said.

In 2015, nearly 17 percent of hospice patients were so-called live discharges, according to a report from the Medicare Payment Advisory Commission. Two days before a discharge, hospices are required to give the patient or family members a Notice of Medicare Non-Coverage. Expedited appeals of discharge decisions can be lodged with a Medicare quality improvement organization.

There are no regulatory requirements governing what hospices should do to facilitate live discharges. Some hospices will spend weeks helping patients make arrangements to receive medications, medical equipment and ongoing care from other sources. Others offer minimal help.

At The Very End

Almost 1 in 8 hospice patients don’t get visits from professional staff during their last two days of life, according to a study published in JAMA Internal Medicine last year. And this can leave families without needed support.

Some hospices have responded by creating programs specifically for people who have a very short time left to live. “We’ve put together a special team for people who are expected to live 10 days or less because that requires a different kind of management,” said Ann Mitchell, chief executive officer of Montgomery Hospice. “Instead of a nurse for every 15 patients, a nurse on this team will have five to six patients and a social worker is available seven days a week.”

“One-third of our patients are here for less than seven days and often we get them in a crisis,” said Kerr of Hospice Buffalo. “We’ve had to repurpose our services to address the urgency and complexity of these patients’ needs and that means we have to be ever more present.” Across the board, Hospice Buffalo requires that patients be seen within 24 hours of an expected death.

for Kaiser Health News

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

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