Monday, April 16, 2018

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
National Coalition for Hospice and Palliative Care

National Consensus Project

Thursday, April 12, 2018

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

Tuesday, April 10, 2018

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 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

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.

Monday, April 2, 2018


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 Banach, JD
President and CEO

Thursday, March 29, 2018

NHPCO Update on PTAC

On Monday, March 26, NHPCO attended the Physician-Focused Payment Model Technical AdvisoryCommittee (PTAC) in Washington D.C. to publicly support the need for the Centers for Medicare and Medicaid Services to test a model to address the continuum of care needs for the seriously ill population. The first proposal for discussion was the American Academy of Hospice and Palliative Medicine’s proposal for a Patient and Caregiver Support for Serious Illness (PACSSI) model. AAHPM representatives did an excellent job answering questions from the PTAC. Several PTAC members expressed the urgency for a care model for the seriously ill and their families. The PTAC members recognized a gap in care exists and expressed the importance of creating a distinction between palliative care and hospice while encouraging close collaboration between both services. The PTAC voted to “Recommend to the Secretary limited scale testing of this model”. The PTAC’s vote reflected support for 8 of the 10 criteria. 

Several stakeholders expressed support for the PACSSI model. As NHPCO’s Vice President of Palliative and Advanced Care, I was proud to provide public comment on behalf of NHPCO to emphasize three main points:
  1. The PACSSI survey used to obtain patient reported outcomes and experience of care builds on the existing Hospice CAHPS survey, which is designed to measure and assess the experiences of patients who died while receiving hospice care, as well as the experiences of their informal primary caregivers. Use of these NQF-endorsed measures supports seamless care delivery for seriously ill individuals and their families experiencing PACSSI and hospice care.
  2. The process measures align with the domains of care recommended by the NCP Clinical Practice Guidelines for Quality Palliative Care (3rd edition) and support access to an interdisciplinary team that includes physicians, nurses, social workers, therapists, home health aides, spiritual caregivers, bereavement counselors, and others as needed, for seriously ill individuals and their families.
  3. Hospice is the gold standard in evidence-based care for terminally ill individuals. 
    Existing palliative and advanced care programs demonstrate that seriously ill individuals experience more timely access to hospice care. We would expect a model that closely coordinates care between the model and hospice, with the goal of improving the length of stay in hospice. Using the hospice median length of stay, currently at 17 days, may be a better reflection of a quality measure.  Furthermore, for those concerned with long lengths of stay in hospice, the PACSSI model offers an alternative that addresses a current gap in care and support service. We would expect a shorter length of stay in hospice for long stay patients, where patients in the model may be referred to hospice later in their disease trajectory. 

Additional speakers included Sandy Marks representing the American Medical Association, she expressed support of the PACSSI model. Dr. Diane Meier provided public comment on behalf of the National Coalition for Hospice and Palliative Care.  Betty Ferrell spoke on behalf of HPNA. Dr. Martha Twaddle and Dr. Dana Lustbader also provided comments based on their experience in the field. Betty Ferrell and Dr. Martha Twaddle have co-chaired the revision of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, 4th edition, expected to be out in mid-2018. Dr. Lustbader is co-presenting an NHPCO webinar pn April 12 on Advances in Telehealth forPalliative Care and Hospice. 

The Coalition to Transform Advanced Care (C-TAC) followed the AAHPM presentation with the second round of their proposal, Advanced Care Model, focused on the same patient population. The PTAC also voted to “Recommend to the Secretary limited scale testing of this model”.  

The PTAC expressed their desire to urge CMS to develop a model as soon as possible that recognizes the strengths of both models rather than recommend either model for implementation. After much deliberation, the PTAC determined they would combine their letter of recommendation for PACSSI and ACM because they saw pros and cons to both models. They encouraged ongoing collaboration between all stakeholders to develop a palliative care model for the seriously ill.  You can find more information on the PTAC website. 

NHPCO is actively collaborating with the National Coalition for Hospice and Palliative Care, AAHPM, CMS, and other stakeholders to offer our expertise in providing care for the seriously ill and ensuring that patients and family members are an integral part of the care plan. NHPCO encourages members to be ready to participate in a CMS model, if available. To prepare our members for this tremendous opportunity, NHPCO is working on creating resources to help operationalize and sustain palliative care programs regardless of whether a model is launched by CMS or not. The NHPCO Palliative Care Council reconvened on March 23, to assist in these efforts. NHPCO members can join the Palliative Care community on and also participate in a member survey on palliative care, coming out in May (look for news of the survey in weekly NewsBriefs).  

Lori Bishop, MHA, BSN, RN, CHPN
Vice President of Palliative & Advanced Care
National Hospice & Palliative Care Organization

Lori Bishop at the PTAC meeting.


Wednesday, March 28, 2018

Right-sizing your hospice facility: Finding the Goldilocks point for hospice beds

I spoke to a colleague a few days ago and mentioned that I’d recently consulted to a hospice that plans to open a new hospice facility later this year. “Are people still doing that?” she asked me.
There’s been so much ink spilled about the financial risks of hospice facilities (some of it written by me, I admit) that you too, might be surprised to learn how much activity there is in the U.S. around building, expanding and re-formulating hospice facility beds. But hospice beds continue to be a critically important part of the provision of quality hospice care.
It's true that successfully planning a hospice facility is more complex than in years past. Whereas in the 1990s many hospice facilities opened to greater than expected demand and high occupancy rates, these days a provider must be very careful to calibrate the likely demand to the number of beds built and staffed.
But there are still very good reasons to grow or increase the number of hospice beds in many markets. Among the reasons you might consider adding beds to your capabilities:

  • For defensive competitive reasons, to keep another competitor from stealing hospice market share
  • High-acuity hospitals in your market are seeking a partner to whom they can discharge high acuity end of life patients
  • Your existing facility is always full and you’re turning patients away (yes, this is happening in several markets)
  • You have an opportunity for partnership with another provider that may be a consistent source of new referrals
  • You see an opportunity to add to your overall patient volume by gaining a reputation for expertise in managing complex illness and challenging patients

The real question is, how can your hospice best plan to meet the needs of your community responsibly? And consider, too, that perhaps the root of the problem isn’t the number of beds, but how they’re configured. Cost structures for hospices vary widely, depending on how beds are housed. Many providers are finding that while freestanding structures are high-cost, high-risk, beds located within a dedicated hospital or nursing facility wing have much lower fixed cost burdens.
On April 22, I’ll be speaking at the upcoming NHPCO Management and Leadership Conference, leading a special half-day session for hospices interested in the latest strategies around right-sizing hospice facilities.  I’ll be sharing the latest news and planning tools from the many innovative programs in the U.S. that are finding new ways to achieve the best and highest use for hospice beds in their markets. (Online registration is available through April 2 and onsite registration will be available on April 22.)
This will be an interactive workshop with limited attendance to allow participants to share individual problems, ideas and opportunities with their peers and with me.
by Sue Lyn Schramm, MA
Schramm Consulting LLC