Monday, February 24, 2020

A CEO's Thoughts on Marketplace

Last week, on February 21, the most recent piece on hospice care by NPR Nashville reporter Blake Farmer went out via Marketplace. In his story, “Some wonder whether hospice puts too much of the burden for care on families,” he once again questions whether family caregivers are overwhelmed by hospice in the home and are hospice providers doing enough with a $200 a day reimbursement.

After his last story ran in January, I spent time on the phone with Mr. Farmer explaining how hospice works and what the many benefits and challenges are in providing care. I stressed the importance of balanced reporting and was direct about what we do so well as a provider community and what we as a field must focus on and continue working towards.

Given the current structure of the Medicare hospice benefit, it is not possible to provide the support that those unfamiliar with hospice care might expect. We must learn to address unreasonable expectations just as we continue to challenge ourselves to innovate and reach beyond current limitations. We must not allow poor care to ever take a rampant hold within our field or become the accepted norm for the care we provide.

The focus on quality must be expanded; in fact, that’s what we are doing by offering educational programs like the Hospice Compliance Certificate Program and the inaugural Hospice Quality Certificate Program that will debut at next month’s Leadership and Advocacy Conference. The upgrade to our E-Online education portal, the focused topics of the 2020 webinar series and the decision to cut the webinar registration fees in half to make these offerings available to as many of our members as possible, the ongoing free webinars focused on business development have been created to help providers thrive in this challenging environment. Working to help provide the resources and education needed to continue to raise the bar on quality is what is driving the creation of our new Quality Connections program that will be unfolding over the next two years. We will shine a light on exemplary programs, help good programs become great, and provide the support new or struggling hospices might need.

Hospice works. We know that. All of us are familiar with the talking points that reinforce the value of hospice and the value that hospice brings to the health care system:
  • 97.3% of respondents indicated that they would recommend their hospice to others.
  • A study from the Icahn School of Medicine at Mt. Sinai, clearly demonstrates higher quality services and better outcomes for the patient and family.
  • Research published in peer-reviewed journals amply demonstrate that hospice care saves the health care system money; about $2,800 per Medicare beneficiary reports a Duke study.

(For those interested in a deeper dive into some of these points, I encourage you to download the policy brief, “Hospice: Leading Interdisciplinary Care,” that was commissioned from Dobson & DaVanzo as part of the My Hospice Campaign.)

I take the work that we are all doing very seriously and am passionately committed to improving quality, access, and the role of person- and family-centered care in our health care delivery system. NHPCO benefits from the support of so many across the broad hospice and palliative care provider community in the U.S. 

We know that not all hospices are the same; in fact, our diversity is a strength. However, we cannot allow our divisions—in tax-status, location, or any other difference—distract us from focusing on quality patient and family care. It will take all of us working together to focus on improving our care system.

Edo Banach
President and CEO
February 24, 2020

Wednesday, February 12, 2020

Death is but a Dream, an excerpt

The first book to validate the meaningful dreams and visions that bring comfort as death nears, Death is but a Dream, has been written by hospice physician Christopher Kerr, MD, PhD. NHPCO is proud to have Dr. Kerr as the day two keynote for the 2020 Interdisciplinary Conference in Little Rock, AR (October 12 - 14).

NHPCO is pleased to share an excerpt from Death is but a Dream, with permission of the publisher Avery, a member of Penguin Group (USA) LLC, A Penguin Random House Company.

For some patients, the peace and understanding gained at end of life is achieved through dreams and visions that wash over them, summoning up images and emotions that soothe and appease. Others attain perspective through a more con­scious process of reflection that they methodically apply to their end‑of‑life dreams and visions. These are patients who are keen on trying to understand the mysterious process through which death is somehow turned into a familiar, even welcome friend at life’s end. This was true of Patricia, for instance, who had been so eager to help us move our research along. The conclusions we reached through the study were truly remarkable, but it took patients like her to give them a human face. Patricia had such an exceptional recall of her end‑of‑life dreams and visions that she became one of our richest points of access to the comforts pro­vided by these experiences.

When she arrived, Patricia took Hospice Buffalo by storm. She was ninety years old, and nothing about her past, physical condition, or appearance could have prepared us for the en­gaged, alert, and witty person she revealed herself to be. She had advanced pulmonary fibrosis and often struggled to breathe at rest despite being permanently connected to a portable oxy­gen tank. Patricia’s condition was so advanced that she could not walk across the room without experiencing severe respira­tory distress, but she made up in verbal delivery what her body couldn’t deliver in mobility. She spoke in as uninterrupted and fast a flow as an auctioneer. Talking to her for any length of time inevitably eclipsed her physical symptoms or the medical equipment she depended on, so much so that someone once re­marked that she wore her nose tube like an accessory. She was so self-possessed that anything connected to her body, artifi­cial or otherwise, looked like an extension of her, no different from the horn-rim glasses or the butterfly hairpins she wore. She was also intellectually vibrant and curious, and we found ourselves thinking of her more as an interlocutor than as a pa­tient. Patricia maintained a desire to engage and express herself right up to the very end, even when her disease had progressed to the point where she longed to die.

Her mother had died of pneumonia when Patricia was nine, and at thirteen, she’d begun taking care of her father, who had been diagnosed with the same disease Patricia now had, pulmo­nary fibrosis. They did not have access to the social services that are now available to severely ill patients and their families, so caring for him was a full-time job. Patricia’s description of this period in her life revealed how, in the post-depression era, ma­turity at an early age was not the luxury it became for later gen­erations of American teenagers: “I had to be a caretaker from the time I was very, very young. It was a difficult role to play at any stage but particularly difficult when you are thirteen. I never resented it, though, not until I came to these crazy dreams.”

Patricia’s “crazy dreams,” as she put it, fascinated her. She wrote extensively about them in her diary and happily shared her abundant commentary with us. She was grateful to be around people who not only took them seriously but with whom she could discuss their singular nature. “It isn’t the morphine, then?” she asked when we first broached the topic, relieved to know that experiences that mattered to her were not just drug-induced hallucinations. And after pleading with me not to su­garcoat what was happening to her, she added, “So there is a pattern to this thing? Being bossy and inquisitive, I am going to ask you a hard question: Is there any way of knowing where on this graph I am?” She had realized that there was a connection between dream frequency on the one hand and one’s closeness to the end on the other, so there was no stopping her analytical mind from trying to identify a logic to the changing patterns of her dreams. Accustomed to managing lives from a young age, she was now working on managing her last moments, including anticipating her time of death.

As her condition worsened, she increasingly spoke of death as deliverance, so much and so often that her grown children became uncomfortable, asking her to refrain from mentioning it in their presence. I could not blame them. Here was the mother they cherished, who was talking about her death, which was also their loss, as something to scratch off her to‑do list. It felt to them like she was discussing her pre-death dreams as if she were conducting a laboratory experiment.

I knew better than to mistake this obsession with death and dying for cheap morbidity. Patricia had spent her life taking care of others. She had tended to her dying father at an age when most kids are preoccupied with fantasies about running away or stealing a smoke; she had lived through the war, the rationing system, the anxiety of not knowing whether her fi­ancĂ© would survive his armed service to the country; and she had raised kids in a household where she’d had to “wear the pants.” Having spent a lifetime managing others, she was now preparing for her own exit, as much for her sake as for theirs. After all, only the unexpected can be traumatizing, so prepar­ing herself for death was one way of averting trauma, for herself as well as for her loved ones. Patricia had spent her life worrying about them, and she was not about to suddenly change course at its end. If anything, people’s character traits get more pro­nounced with age. The following passage that she once read to me from her diary illustrates this best: “I am of no use to anyone now, I hate to think that. I have to get help with stuff and it will only get worse, I am sure. So that is why I am saying let’s get on with it. I dearly love all the ones that are still here, but I can’t do anything for any of them, and it is too bad that they have to bother about me. So this morning, I’d like to cry but I don’t. I’d like to have my mother tell me it is ok. I’d like to wake up and walk up to Chuck [her husband] and take him by the hand and walk into the eternal sunset, but that is another story, another breath, another day.”

Patricia was alternating between fear of the unknown and a sense of defeat, disguising both under a veneer of casualness she did not truly feel. It was a facade meant to reassure herself as well as others. After all, she was not one to draw attention to her troubles. “Everyone has problems,” she would say. “I would never go down the hall and complain, because there is always someone worse off than I am.”

Certainly, there were extreme episodes of breathlessness that would coincide with her feeling utterly dejected and plead­ing for a swift death, but until the last week of life, these pleas were more cries of exasperation than of conviction. On her deathbed, several days before the end, she admitted as much: “You try your darndest to get better because so many people depend on you, but now I am content to just leave everything. That started just recently.” This was also when she somehow found the strength to remember and recite Hamlet’s famous soliloquy: “To die, to sleep. To sleep, perchance to dream—ay, there’s the rub. For in that sleep of death what dreams may come.”

Patricia had a way of making me do homework I should have attended to in college; I once again had to resort to Google to brush up on what it was that concerned Hamlet about the after­life. I did so later that day and smiled, remembering how several weeks earlier, she had apologized for inadvertently interrupting me when I was handing out instructions to staff: “You’d better watch out or I’ll be sitting in your seat soon,” she said. I was go­ing to miss her.

For Shakespeare’s forlorn hero, the fact that we don’t know what lies beyond “when we have shuffled off this mortal coil” is what makes us stretch out our suffering for so long. I suspect that what kept Patricia hanging on to life for as long as she did despite mounting pain and her exhortations to the contrary had everything to do with love: of family and of her research team at Hospice Buffalo. I am also grateful that her end‑of‑life experiences helped bring her, one of the most selfless human beings I knew, back in touch with her core self.

On one of my last visits with Patricia I asked her, “Who would you want to see in your dreams going forward?” even though I already knew the answer. As predicted, she replied, “I’d like to see my mother because I never got to know her.”

I went to see Patricia one last time before she died. She could no longer speak and looked unresponsive. I bent over and asked her in a whisper if she’d seen her mother, not truly expecting an answer. She smiled, nodded, and pointed upward.

Nothing was said and everything was understood.


Wednesday, February 5, 2020

Meet the LAC Opening Keynote Speaker, Don Berwick

Don Berwick, MD, is a leading advocate for high-quality healthcare and is one of the top thinkers in healthcare today. He is Former Administrator, Centers for Medicare and Medicaid Services, and the Founding CEO of the Institute for Healthcare Improvement. NHPCO is honored to have him as the Opening Keynote at its upcoming Leadership and Advocacy Conference (March 25 – 27, 2020).

In an interview available on the website, he describes the societal role of the Triple Aim. Here, we share part of that insightful interview:

What were the origins of the Triple Aim?

The Triple Aim was the brainchild of two of IHI’s faculty, John Whittington and Tom Nolan, who came up with it in about 2006. It was a real breakthrough.

The goal they had in mind was to articulate, in a very cogent way, the aims of health care from the viewpoint of the society it serves. You can’t define or pursue quality if you don’t know your aims. The proper way to think about goals is that they’re external to the organization, external to the industry. They lie in the world of the people we help, the customer, the patient, the consumer. So, what would society say it’s hiring health care to do? That’s the key initial question in quality.

Up until that time, the best answer would have referenced the Institute of Medicine Crossing the Quality Chasm report which had laid out six dimensions of need they called Aims for Improvement. Most people in the field now know them:

    Safety — Don’t hurt me;
    Effectiveness — Promise me science;
    Patient-centeredness — Honor me as an individual;
    Timeliness — Let’s have no delays that aren’t instrumental;
    Equity — Close racial and socioeconomic gaps in health; and
    Efficiency — Don’t waste money, space, or any other resources.

Learn why the Triple Aim continues to surprise Dr. Berwick today; find this interview online, "The Triple Aim: Why We Still Have a Long Way to Go."

As the opening keynote speaker for LAC 2020, Dr. Berwick will be drawing on the so-called “Radical Redesign Principles” for a new health care system from the Institute for Healthcare Improvement’s Leadership Alliance. He will explain especially the first of those principles: “Change the Balance of Power,” with specific illustrations of how patients, families, and communities can take over their own care and better pursue their own health.


Learn more about the educational offerings at LAC 2020 or download the conference brochure (PDF).  Register by March 2, 2020, to secure advance registration rates.

Monday, February 3, 2020

Top Ten Reasons Hospice Development Professionals should Develop their Fundraising Skills at LAC

By Tony Kudner

Fundraising and donor development for hospices can be a unique proposition- we have the honor and challenge of carrying out the mission of our organizations under circumstances that many other fundraising professionals simply don’t face. Our donor ‘why’ is a sentinel event in many cases, meaning we have to adjust our strategies and tactics to ensure our programs can benefit from the philanthropy of our unique donor base.

Simply put, there is only one place where you can get the hospice-specific tips and tools you need to run a successful development operation to support the mission and vision of your organization: NHPCO’s Leadership and Advocacy 2020. This year’s conference features a dedicated fundraising development track where you can gain access to some of the best practices in the field. What reasons specifically you ask? Here are ten reasons for a development professional in hospice at any stage of their career to attend:

  1. Network with community-leading peers: You’ll get to meet with experienced and savvy professionals from some of the largest nonprofit hospices in the US, and discuss relevant issues with them regarding their operations.
  2. Move beyond the one-time memorial donation trap: Attend the preconference session to learn key strategies for developing a first-class grateful families program, from conception to launch.
  3. Find your Hospice Heroes! Learn how to take the goodwill your staff build in the field everyday and turn it into sustainability for your program!
  4. Learn about Capital in the shadow of the Capitol: take a deep dive into moving beyond using capital campaigns for buildings, and learn about funding endowments for your ongoing operations.
  5. Tell better stories! Hospice is full of rich stories, and you can learn the science (yes, science!) behind turning them into effective messaging for your fundraising asks.
  6. Is your Board Bored? Learn about maximizing your boards and advisory groups in terms of your donor network and their own commitments to your cause.
  7. Learn how to cook Filet Mignon on a Mac and Cheese budget: OK, not really, but you’ll learn how to start a development program with best practices even if you’re starting from scratch!
  8. Request a bequest: Learn how to develop the techniques to solicit and cultivate bequest gifts- ensuring the longer term viability of your organization.
  9. Earn your CE! These courses will be eligible for CFRE credit- keep or work towards your certification while you attend!
  10. ENJOY DC! Who doesn’t love a few days away? Washington DC in the spring is beautiful and with many free museums and sights, affords sightseeing for any budget.
There won’t be another opportunity to learn from such a varied and high-level group of hospice fundraising professionals. An investment in your skills and expertise by attending LAC will easily return multiples in your fundraising development operations when you return home- join some of the best hospices in the United States to participate in the fundraising and development track at the NHPCO Legislative and Advocacy Conference this spring!

Tony Kudner is Vice President, Communications and Public Affairs for Seasons Hospice & Palliative Care.