NHPCO Introduces My Hospice Campaign to Highlight Value of Hospice Care

At their annual Management and Leadership Conference, the National Hospice and Palliative Care Organization today launched a new advocacy campaign to reinforce the value of the Medicare hospice benefit among policy and healthcare decision makers to foster a policy environment that will support patient access to high quality, comprehensive hospice and palliative care.

As Medicare’s first coordinated care model, hospice is one of the few sectors that demonstrates how healthcare can – and should – work at its best for its patients, offering a successful model for expanding access to person-centered, integrated care to all patients with serious, advanced and life-limiting illness, and their caregivers.

The campaign, My Hospice, aims to demonstrate what hospice means to each unique individual and family it serves. Through the My Hospice campaign, NHPCO will highlight how critically important hospice and palliative care are to Americans across the country, while educating policymakers that hospice is an integrated care program that works and a high-quality benefit that matters.

“Hospice truly is Medicare’s first coordinated care model – and it works,” said Edo Banach, President & CEO of NHPCO. “In an increasingly fragmented and broken healthcare system, hospice is one of the few sectors that demonstrates how healthcare can – and should – work at its best. Through My Hospice, we will demonstrate how our coordinated and person-led approach to care protects choice and access to individualized services based on a person’s unique care needs and wishes. It is a system that works for patients, families and the Medicare program, alike.”

The My Hospice campaign is founded on three main principles:

• Hospice is an integrated care program that works.
• Patients and families must continue to have timely access to high quality, comprehensive hospice care.
• Future health reforms should build upon the successful hospice model by expanding access to comprehensive, coordinated care and person- and family-centered care to all patients with serious, advanced and life-limiting illness.

To patients, My Hospice represents their choice to receive the care that they want, while to family members and caregivers, it means joy, purpose, calling, privilege, passion, teamwork, mission, comfort and support. Through the My Hospice campaign, NHPCO will be bringing together the hospice community to share experiences to help policymakers, healthcare influencers and others better understand the tremendous benefits of hospice care.

Continued Banach: “We are not just an industry - we are about person and family-centered care that honors, uplifts and supports. Now is the time to come together to protect hospice as we know and love it today, and to make sure more people get the high-quality care that we offer, earlier.”

To learn more about the My Hospice campaign, please visit MyHospiceCampaign.org. 

Coordinated Care Is More Than a Buzzword for Hospice Providers

As much as we talk about “coordinated care” in health care today, it is regrettable that most people still contend with an uncoordinated, inefficient and stressful system at the end of life.

Often, health care professionals are singularly focused on eliminating illness and find themselves ill-equipped to provide the comfort and guidance needed when a person’s illness requires care rather than, or in addition to, a cure. Families who don’t know that there’s an alternative stand helplessly by as the last months of life get swallowed up by costly, sometimes unnecessary treatments that can hurt more than they help.

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Health care consumers and policymakers must be aware that it doesn’t have to be this way. In an increasingly broken and fragmented health care system, hospice care – the nation’s first coordinated care model –  shows how health care should and can work at its best for patients at the end of life.

A grassroots movement that began over 50 years ago, the success of the hospice model led to its adaptation into Medicare in 1982 — a mere four years after it began as a demonstration program. Today, an estimated 1.7 million Americans receive hospice services each year, with 1.4 million Americans choosing to utilize hospice through their Medicare benefit.

Expert medical care, pain management, emotional and spiritual support services are all provided and tailored to the patient’s and family’s needs. Hospice caregivers represent a comprehensive, interdisciplinary team of physicians, nurses, social workers, chaplains, volunteers and other professionals that ensures the patient is cared for beyond just his or her medical needs. Hospice respects the dignity of the patient’s life, honors his or her choices and provides a care plan reflective of a patient’s values. This philosophy of care is illustrative of hospice’s legacy and commitment to the best care for every hospice patient.

It’s a system that thrives because hospice providers understand how to balance the patients’ wishes with their health care needs – and coordinate care accordingly. This investment in care actually saves Medicare money – by one estimate, as much as $2,300 per patient — not at the expense of the patients, but rather by allowing the patients and their caregivers to guide decisions that can reduce their use of hospital-based treatments, resulting in fewer complications and side effects.

Despite more than 35 years’ success in the Medicare program, inevitable changes in our health care system could threaten hospice’s effective, original system of coordinated care. A rash or untested policy shift could lead to care delays, limitations on patients’ ability to select their preferred provider or a loss of autonomy for the hospice medical directors.

Change is inevitable and can often be good, but it must be incremental change that does no harm and respects patient and caregiver choice for more, rather than less, options for addressing serious illness.
While the goal of hospice care is not to save lives, it is still often called “lifesaving” by patients’ families. After experiencing the confusion and frustration of fragmented care, many are overwhelmed by the quality, compassion and personalized service that hospice care delivers. The hospice model exemplifies these principles of quality, compassionate and personalized care that beneficiaries, payers, policymakers and their constituencies want.
                         
No patient or family should suffer needlessly at the end of life – and that includes either physically or emotionally. America is getting older, but members of the hospice and palliative care community are prepared to meet the growing need for more hospice care. And we are ready to do so in a way that is driven by our patients and their families.

Doing so demands that any health care reform allows hospice to continue to build on our successful foundation – and expand our patient and family-centered model across the care continuum. Protecting that continuity is essential to care for all patients with serious, advanced and life-limiting illness.
Rather than just trying to make hospice more like the rest of the health care system, how about making the rest of the health care system more like the original coordinated care model? Coordinated care should be more than a popular health care buzzword. It should be the driving force for all health care everywhere – just as it currently is for hospice.

It’s the model and philosophy that have driven hospice’s success and changed lives for the better. It is a model that we will continue to fight for and for policies that support peace, comfort and quality at the end of life.

By Edo Banach, JD
President and CEO
National Hospice and Palliative Care Organization

National Healthcare Decisions Day is Here!

Advance Care Planning: Reminder for YOU to Have the Conversation.

The scenario generally plays out the same. A person becomes ill…too ill to make decisions for themselves…too ill to communicate with the attending medical staff. Nearby family rush to the hospital bedside. The physician explains what’s happening to the family. Things aren’t looking good or the medical terminology is not easy to understand. After some time, the family is left to make decisions for their seriously ill loved one. Decisions that have not been discussed or thought about prior to this point. What do we do? Who has the final say?  Things normally go downhill from here. You’ve seen it. I’ve seen it. Medical staff dread it. No one wins.  Making healthcare decision at the hospital bedside is not the right time.  These conversations need to happen before the crisis, not during.

Speak Up
As a mom, sister, daughter, past and future caregiver, I understand the importance of having conversations about my future healthcare decisions with my family and friends. These conversations can be hard to begin. However, there are many resources, tools and games that help families have these talks in creative ways. Over the years, I have facilitated several talks on how to plan and communicate your future healthcare decisions.  One of my personal favorite resources is the Speak Up video. This video is one of the tools I consistently use when explaining why it’s so important to have the conversation and complete an advance directive.  I encourage you to post and share this video with your family and friends on Facebook. They’ll thank you later. The message is short and simple.

As we advocate for more families to participate in advance care planning, keep it simple. I remind my family and friends that advance care planning is much more than completing a form. It really is more about the conversations you have before and after any document is completed.

Lead By Example
April 16 is National Health Care Decisions Day (NHDD) and this year’s theme is, “It always seems too early, until it’s too late.” NHDD is a call to action for EVERYONE to:

→Think about your beliefs and values,
→Write them down,
→Choose a healthcare proxy (someone who speaks for you if you are not able),
→Complete an advance directive, and
→Share with your healthcare proxy, family and doctors.

The purpose of NHDD is to inspire, educate and empower the public and providers about the importance of advance care planning – and most importantly, to encourage people to express their wishes regarding healthcare and for providers and health care organizations to respect those wishes, whatever they may be. As someone in the health care field,  be sure to complete your advance directive and encourage your colleagues and loved ones to do the same. Practice what you preach.

 For more information and resources on advance care planning, visit the National Coalition for Hospice and Palliative Care member organizations websites.

By Cozzie King
Manager
National Coalition for Hospice and Palliative Care
National Consensus Project

Gratitude and Grief

Last week I had the privilege to attend the Global Launch Symposium of the Lancet Commission Report, “Alleviating the Access Abyss in Palliative Care and Pain Relief”. Throughout the event I had the opportunity to connect with hospice and palliative care professionals, global health experts, and many others to learn more about the findings of this landmark report.  The purpose of the event was to develop action steps and design programs for national, regional, and global organizations to implement the key findings.

I listened to the presentation of findings and felt mixed emotions. Initially, I felt the grief associated with the inequity of palliative care and pain relief the world over. In particular, the fact that the majority of the poor in low and middle-income countries live and die in pain without the benefits we sometimes take for granted. 

The report explains how 61 million people worldwide experience serious health related suffering each year. Over 80% of them live in low and middle-income countries and lack the most basic access to pain medication and palliative care. Of those, 25.5 million died without the benefit of pain relief, among them children.

 One is forced to ask, “Why do the poor not have the same right to pain relief that those of us in high income countries expect?”  These issues were discussed during the symposium and the report (linked below) details both the problem and solutions.

In addition to grief, I also felt gratitude. 

Gratitude is often challenging to marshal when dealing with these difficult realities. However, it is something we need to consistently bear in mind. For in order to be the voice of the voiceless, we need to first reflect on our good fortune and privilege. Doing so can help us realize what we have and understand what not having it might represent.

Additionally, expressions of gratitude give others the strength they need to deal with the challenging work ahead. Starting from a place of gratitude, a “place” in fact, where I began my prepared remarks at the Symposium, can be powerful.

Think about the expertise we have available to us to provide expert pain and symptom control. As an example, access to medications and also the non-pharmacologic interventions that help our patients and families. Also, think about the many dedicated physicians, nurses, social workers, spiritual care providers, therapists, volunteers, and all others on our teams that we can thank. And then thank them!

So, let me say how grateful we are to all of you for the tremendous work you do every day. And again, tell a fellow team member how much you appreciate them too.  

For more about the Lancet Commission Report. 

By John Mastrojohn III, RN, MSN, MBA
Chief Operating Officer
NHPCO

Hospices are Among America’s Most Important Care Providers

Within the hospice community, we have a shared vision of bringing the best that humankind can offer to all those individuals facing serious, advanced and life-limiting illness.

Choosing to elect hospice care is an important decision that can greatly benefit patients with life-limiting illness by improving quality of life and proving support to a patient’s family during a difficult time. For people living with a wide range of diagnoses including cancer, heart disease, dementias, lung disease, kidney disease, and other medical conditions, hospice is an opportunity to spend one’s last days in comfort and dignity.

Hospice is not a place, but rather a special kind of coordinated care that employs a multi-disciplinary care team to attend to a person’s physical, emotional and spiritual needs at the end of life.

For the more than 4,000 hospices that care for more than 1.6 million patients every year, hospice is a sacred calling.  Hospice professionals use the special skills and expertise to support patients and family caregivers during of the most challenging experiences we share as human beings.

A dedicated team of doctors, nurses, social workers, counselors, aides, spiritual caregivers, therapists, and volunteers work together in a team to address the patient’s and family’s identified needs. In addition, hospices help provide medications, supplies, equipment, hospital services, and additional helpers in the home, as appropriate.

The nurses and physicians who serve hospice patients are experts in their fields and are trained to use the latest medications and devices to help patients with pain and symptom relief. Additionally, physical and occupational therapists are available to assist patients to become as mobile and self-sufficient as possible and are often joined by specialists schooled in music therapy, art therapy, diet counseling, and other therapies.

Hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, so it addresses these as well. Counselors, including spiritual caregivers, are available to ensure one’s spiritual needs are taken care of.

Patients and families should not hesitate about discussing their end-of-life wishes and options for care with medical providers. One of the best ways to choose a hospice is to ask questions. A local hospice provider should be more than willing to help you understand their services and how they might be appropriate for your specific situation.

To learn more about hospice and palliative care, I encourage you to visit NHPCO’s CaringInfo.org website. Additionally, NHPCO offers a worksheet on Choosing a Quality Hospice (PDF) and an online Find a Provider Tool to help people get the information they need when facing serious and life-limiting illness.

A recent episode of CNBC’s American Greed shared the story of a hospice organization that failed to live up to the trust given as a Medicare certified provider. This disturbing story does not reflect the standards of excellent and commitment to quality that can be found throughout our nation’s community of hospice providers.

As the President and CEO of the National Hospice and Palliative Care Organization, I am proud to represent a provider community that is tasked with such an important responsibility and commend the vast majority of hospice providers in the U.S. who not only meet but exceed the high standards of care that hospice patients and their families expect and deserve.

By Edo Banach, JD
President and CEO
NHPCO

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Hospice Quality and Compliance Sidebar 

The National Hospice and Palliative Care Organization (NHPCO) has been a leader in aiding and assuring provider compliance with federal policies that protect and enhance the patient and family experience. 

Compliance and Quality are Not Optional

• The federal Hospice Conditions of Participation provide the minimum standards for care provision and all providers should not only meet but exceed the COPs. 
• If hospice programs are abusing the system, then they ought to be singled-out and their practices corrected or they should no longer provide hospice care.

NHPCO and Hospice Community Support Safeguards and Appropriate Surveys 

• NHPCO, working on behalf of the hospice community, advocated for legislation that brought timely and appropriate surveys of hospice providers at least every three years. 
• NHPCO is committed to providing tools and resources to ensure that hospice providers understand the ever-changing regulations for the field and are compliant. 
• NHPCO, on behalf of the hospice community, continues to work closely with both MedPAC (a Congressional advisory body) and the Centers for Medicare and Medicaid Services (the hospice community’s principal regulator) to identify problems and fashion responsible and reasonable safeguards to correct gaps in the regulations.

 Care of the Dying is Complicated

• The Medicare hospice benefit requires a six-month prognosis in order for a person to begin care – but that should not be confused with a limit to care. Misunderstandings about the “six-month rule” have long been considered a barrier to timely access to hospice. 
• People do not come with an expiration date, nor does their end-of life-care. Predicting a six- month life expectancy, even on an ongoing basis as required by the federal hospice regulations, is a complex and inexact art and science. 
• While hospices once cared predominantly for cancer patients at life’s end, providers now are skilled at caring for a wider range of patients with multiple complex conditions.

Shapes

Flying West, the crop circles are interspersed with the rectangles and squares of America. Cut by an occasional road or winding river, America from the sky looks neat and symmetrical. But on the ground, America is anything but. 

Health care in America is a particularly acute example of the disconnect between a 35,000 foot view and reality. Despite all of our innovation and best efforts, most Americans continue to be confused by their health care choices and mismanaged by their health care systems. 

While I am encouraged by innovations in the health care system, I also believe that it is crucial to not let words, or the 35,000 foot view obscure the reality that most of our health care system is driven by acute episodes, is institutionally biased, and driven by clinical determinations that are often made at 35,000 feet.

On the ground, the world is much messier. Children are hungry, seniors struggle with the changes in their health and independence, countless Americans struggle with addiction, and the cold reality of life often overwhelm more academic pursuits. 

It is time that we fully embrace and enhance the one system that consistently deals with reality – of the uncertainty of life, of the interconnectedness of medical and non-medical needs, and of the limitations of any one person or any one discipline in fixing what hurts. That system is hospice, and its person-centered, interdisciplinary gaze is exactly what we need more of today.

How many people in these circles and rectangles below me are struggling with depression?  How many are struggling with addiction? How many are hungry? How many are worried about their ailing family member? We need a system that zooms in on the harsh reality of life, and treats people with compassion and understanding. Not simply from behind a call center, adjudicating claims, managing risk, not on Facebook or via an app, but in real life.  Hospice is such a system – connecting to the heart and soul of humanity. There are few others.

Hospice is busting out of its square because it never belonged in it to begin with. In the coming months, I will be speaking more about how we are going to evolve and provide our real care to many more folks, much earlier. I’m honored to be working with our teams of caregivers, volunteers, nurses, chaplains, social workers, therapists of all kinds, and everybody else that provides real care to real people every day. Thank you for keeping it real.  

Edo
 

Edo Banach, JD
President and CEO
NHPCO