A Letter to Grief - Part Two

By Emily Marge, MPS, NHPCO Veterans Services Specialist

Last year, I ventured into sharing my experience with my uncle's death due to suicide. I wrote my first NHPCO Updater blog post five months after his passing. I was afraid to be vulnerable but hoped that sharing my feelings might help me. The experience allowed me to be comfortable sharing something personal while examining how my professional life intertwines with my grief. The anniversary of his transition into the afterlife was in August. Our family laid him to rest in the National Veterans Cemetery in New York where he always wanted to be, alongside his fellow sisters and brothers who served. To this day, I can hear the echo of “Taps” playing at his funeral and think of him when I feel the stitches on the folded flag in his honor. The death of my uncle is a moment in my life which will forever be part of me, but it does not define me.  

I know I'm not alone as someone who experienced grief from the passing of a loved one due to delayed internments, travel plans, and mandates from the pandemic. I suspect some of you have experienced this in your personal or professional life. If you have, know that you are not alone. While painful, grief can also bring us peace, but it can take years for us to accept that—I know I have yet to. However, I hope one day to be comfortable again around Veterans, who so often remind me of my uncle, without fear of emotions rising up like a tidal wave. Instead, I want to ride the wave with balance; even if I fall a few times, I will get back up again.  

Many in the hospice community including patients, caregivers, staff, and family members, experience these waves of grief, getting back up only to soon be knocked down again by the next wave. When I find myself trying to get up—reaching for air—I work to remember positive moments and realize my uncle’s impact on this world. He may not have had children or married his sweetheart, but he created communities that still benefit from his actions today, even if they do not know his name. His legacy lives on not just through the work he did for fellow Veterans and friends, helping them back up when they got knocked down, but also through my sister and me. We both strive to honor his legacy by continuing to give back; even if we can impact just one person, we never know if or how the resulting ripple effect may touch others. This is how I will get back up from the wave that crashes down on the not-so-good days, knowing that I'm continuing his legacy of kindness.  

If you’re looking for additional support, I recommend checking out the information on bereavement care offered by CaringInfo.org, a program of NHPCO. You might also check out NHPCO’s Facebook, Twitter, and LinkedIn pages for an ongoing conversation about TV series, podcasts, books, and movies that may help you talk about death and grief more openly in tandem with professional support. NHPCO has shared a variety of lists on death-or-grief related resources to consider engaging with, and our community members have left many more in the comments that have helped them and their loved ones. 

If you’d like to take action to advance the crucial, ongoing work of bereavement care providers, and expand access to grief support across the nation, urge your Member of Congress to support the Grief Resilience Investment and Education Fund Act. I’ve done so and encourage you to do the same. 

I want to be kind to myself and honor all forms of the word grief this holiday season. I hope you’ll join me.  

How Doulas Help Hospices Meet Their Mission

By Beth A. Eck, PhD

In June of 2019, I began my quest to become a hospice death doula volunteer. For those who may not be familiar, an end-of-life doula guides individuals transitioning to death and their loved ones through the dying process. After a heady turn of events, I recently completed my first year as the Director of End-of-Life Doula Services for Hospice of the Piedmont in Charlottesville, Virginia. I am a practicing doula for hospice and palliative patients, but in my unanticipated “encore career,” I also train and supervise new hospice doulas, communicate with the interdisciplinary team (IDT), and run consultation groups. My job is a full-time, salaried position; I’ll share a little about that journey below, but more importantly, offer practical steps for hospice agencies to incorporate the end-of-life doula role.

After I returned from my first end-of-life (EOL) doula training in May of 2019, I knocked on the door of my non-profit hospice where I had been volunteering for the previous six months. I asked the volunteer department for supervisory hours (required for the training organization’s certification process) and was told they would need to know more about doulas and what I was requesting. I wrote up a five-page single-spaced proposal replete with footnotes—the occupational hazard of an academic. I covered the support a doula offers; I stated why the work did not require a particular degree or professional background; I offered how doulas offer complementary supports and not duplicative ones (i.e., they did not take the place of social workers or volunteers), and I argued that exploring the proposition was mutually beneficial—I would find out if I was suited to doula work, and they could find out if it was the kind of discipline they wanted to invest in. Because the number of doula training organizations seemed to be proliferating, I knew doulas were becoming more mainstream, and I argued that our hospice could be a leader in working with doulas rather than dismissing their potential impact. I knew I would not be the last to knock on the door.

 Bureaucracy is bureaucracy and so the process was not as straightforward as I assumed, but after many internal discussions, my proposal made it up the chain of command for approval. Even so, there was an overriding concern about structure. To have a doula, even a volunteer one, seemed to require some rethinking of the organizational chart as well as a clear delineation between existing volunteers and doula volunteers.

 If doulas are volunteers, will all patients have equal access to their services? If we have many doulas, who will supervise them? What if we train them and they decide not to volunteer for us and are privately hired by families instead? What if patients don’t want ‘just’ a volunteer anymore and only want doulas? These are legitimate concerns, and the answer for your organization may be different than it was for mine. Instituting an in-house doula program, or incorporating trained doulas into your fold, is not without its hiccups, but my organization and I would argue that it is well worth the effort.

 If you are not ready to hire a Director of End-of-Life Doula Services or have an in-house training program, I want to share what I have learned about how a doula can gain legitimacy within hospice teams and bring value to the organization. Some of these suggestions assume the doulas have a flexible schedule. If they do not, it will require some creative substitutes.

1.     Embed your doulas within an interdisciplinary team. During the orientation period, they can introduce themselves and learn faces, names, and roles without a patient assignment, and can comment on cases where a doula would be helpful.

2.     Arrange for the doulas to shadow team members. This is something a typical volunteer does not do. Shadowing a social worker and chaplain is likely enough, and these disciplines are good choices because doulas will work closely with them while supporting the patient.  The “ride-along” will provide an opportunity to dispel concerns about overlapping roles and help to build bridges.

3.     Discuss and decide on patients for the doulas to serve. Generally, patients who make a good fit are those who are interested in doing life review or legacy work, practical planning, or storytelling. They are patients who wish to plan their own active dying period and/or would like more presence at their bedside. They are also patients whose families welcome this kind of support.

Another barrier hospices may face when first integrating doulas into their programs is that doulas generally work with only one to two patients at a time to ensure those patients and their loved ones have the best experience possible. Doula work is intimate; they can spend hours with patients at any given visit, prohibiting a large caseload. From an administrative viewpoint, this may not sound good. Why is it worth having doulas if they cannot see very many patients?

·       Medicare regulations can make it difficult for dedicated clinical care team members to spend the amount of time they would like with patients; doulas can fill in that space, deepening relationships.

·       Because of this relationship, doulas help hospices achieve the desired continuity of care. We are with patients through each transition in their death journey.

·       Hospices are evaluated on their ability to provide a good patient care experience. Doulas are a bridge to comprehensive team communication as they fill in gaps about patients and their families. Their ability to spend long periods of time with patients means they can provide an intensive layer of emotional support.

·       An in-house doula program need not cost much. Thus far, our program is staffed by volunteers, and we offer the training for free. All costs associated with the doula program are covered by philanthropic dollars. There is some cost to market the program, but death doulas may present a very attractive donor opportunity. If you bring on board doulas trained outside your organization, they need only be trained as volunteers by your hospice to participate.

Having doulas work with your hospice is a win-win, though the road to victory is not necessarily easy. You cannot anticipate every question, scenario, or challenge, and it will take patience to make it work. Hospices were the first iteration of the “death positive movement.” Doulas are the newest. Let’s work together to make sure everyone has their good death.

Beth A. Eck, PhD, is a practicing death doula and the Director of End-of-Life Doula Services at Hospice of the Piedmont (HOP) in Charlottesville, Virginia. Beth started at HOP on August 1, 2021, where she was hired to develop an in-house death doula training program. Beth did her own training with the International End-of-Life Doula Association and Going with Grace. She is National End-of-Life Doula Alliance (NEDA) proficient and a member of the NHPCO’s End-of-Life Doula Council. She earned her PhD in 1996 from the University of Virginia and is an Emeritus Professor of Sociology at James Madison University where she taught for 25 years, most recently in the area of death and dying.

NHPCO’s End-of-Life Doula Council promotes awareness and understanding of the end-of-life doula role. The council is currently seeking feedback on the role of end-of-life doulas in hospice; share your perspective now. To learn more about end-of-life doulas, register for the 2022 Virtual Interdisciplinary Conference to access the on-demand content library through December 31, 2022 and view the session: “Workforce Shortage is REAL…Doulas Offer Real Options.”

Three Things You Can Expect After Integrating Empathy into Your Communication

By Erin Whalen

Empathy is a buzzword these days. It seems to be everywhere from publications such as Forbes and The New York Times to countless LinkedIn articles mentioning empathy’s power and effectiveness.

But in the real world--in the hard work you do helping people die with dignity — is empathy something that fits? And at what cost? What makes it worth the effort? In other words, what’s in it for you?

Empathy does have power; it can help ease your day, as well as those of your patients’ and their loved ones. It’s a shortcut to connection, and if people feel connected to you, they are more likely to listen to your recommendations and trust you as the expert on the death process.

Before we dive into the three things you can expect after integrating empathy into your communication, let’s first define empathy. The research team at Sidney Kimmel Medical College at Thomas Jefferson University in Philadelphia provides the following definition of empathy: “a predominantly cognitive — as opposed to affective or emotional — attribute that involves an understanding — as opposed to feeling — of patients’ concerns, combined with a capacity to communicate this understanding and an intention to help by preventing or alleviating pain and suffering.” Simplified, empathy is the ability to understand another’s perspective and communicate this understanding with the intention of alleviating suffering.

1. Empathy will save you time.

If empathy requires extra work on your part--recognizing and expressing how others feel--how can it possibly save you time?

For one thing, empathy helps someone feel seen and heard. Have you ever been in a conversation where a person kept bringing up the same point, or returning to the same part of the story and couldn’t seem to move on from it? It’s possible that their behavior was driven by their desire to feel seen or heard. As humans, one of our strongest wants is to be understood. If someone feels understood because you have empathized with them, they won’t harp on the same point. They will relax, knowing that you “get it.” On the other hand, not empathizing can lead to the broken record phenomenon we all want to avoid.

Empathy is also a shortcut to the heart of the matter. When you are working with those who are dying and their loved ones, sometimes empathy can get people to a sense of understanding and peace much sooner by helping to gently reveal the essence of a person’s situation or story. For example, knowing the end is near, a son might be incredibly afraid of watching his mom die. He might show this fear by asking many questions, wringing his hands, and shaking his head as he hears your answers. By gently and compassionately providing some empathy, you can take the edge off his fear and help him work towards next steps. Something like this might do the trick: “Listen, I know this isn’t easy to hear. You love your mom so much. You’re afraid of watching her die, and you might even feel some guilt about being afraid in the first place. I’m here for you, and I am happy to answer any questions you have.” This can help ease his mind a little and he will be more open to continuing the conversation.

2. Empathy will form stronger connections.

When you empathize with another person and really see where they are coming from, your connection will naturally deepen. Connection leads to trust. People who trust their medical providers are more likely to be compliant.

Imagine that your patient’s daughter is in denial about her dad’s need to be on hospice and she also insists he shouldn’t be given pain killers, fearing that he will become addicted. You have the medical knowledge and experience to recognize that her worries are not cause for concern, but you just can't seem to convince her of that.

Empathizing with the daughter by naming her emotions and sharing that you want to alleviate her father’s suffering can help her trust you more. You might try something like this: “You’ve had a lifetime with your dad, and you know him best. You’re worried about his tendency towards addiction, and you’re very hesitant about morphine.” (Pro tip: pausing at this point and allowing her to react is one of the most empathetic things you can do). After hearing more of her perspective, you can proceed with additional empathy and a permission statement: “I can see how much you love your dad and want what’s best for him. In my professional opinion, morphine will actually help not harm him at this point. Would you like to hear more about my thinking?”

Empathy creates the opportunity for a dialogue to occur and for common ground to be found. You both want what’s best for the patient, her father, but it may take a bit of empathetic conversation to get there. Once you do, however, it will not be time wasted. When she trusts you, she will be more willing to listen to your expertise and follow the plan.

3. Empathy can help your days be filled with less stress and more fulfillment.

Dr. Dan Siegel, a clinical professor of psychiatry at UCLA’s School of Medicine, uses a hand model of the brain to talk about emotional regulation. When we are in a heightened emotional state, our prefrontal cortex, where rational thought occurs, is not easily accessible to us. How do we get back to our rational selves? With empathy.

Let’s face it-in the field of death and dying, emotions can get very raw, very quickly. If a patient or family member is agitated, your mirror neurons may be firing, and your stress level can increase as a result. Using empathy can help you and your patient to de-escalate. It might take multiple empathy statements before someone can calm down, so be prepared to provide the compassionate, calming presence they need. Sometimes, the most powerful empathy you can offer is silence.

A word of caution: empathy is not a limitless asset. We all can give only what we are capable of giving. Empathy fatigue is a real phenomenon, and it’s important to know when you need to step back and prioritize self-care.

When you think about some of the benefits of empathy—closer connection, recognition of another person’s humanity, deepened levels of trust—you can’t help but see that your days will be more fulfilling. You’ll be reminded of why you pursued this field in the first place, most likely some version of “to help people.” By incorporating empathy into conversations with your patients, their families, and your colleagues, you will most definitely be “helping people,” yourself included.

Staff Retention and Workplace Satisfaction in Hospice and Palliative Care

By Ross Hoffman, MBA

“Always treat your employees
exactly as you want them
to treat your best customers.”
–Stephen Covey

Covey was on to something. In hospice and palliative care, our patients are important to us and our company. We also know that our employees drive the measure of success regarding the care each patient receives. So how do we increase the care we show our employees to help them be successful? With increases in the cost of living, a changing pandemic environment, and growing tensions regarding social and political issues, staff retention and employee satisfaction deserves more attention than ever before. The way we did things ten years ago just doesn’t work, and a dollar raise with a pat on the back isn’t enough. We are finding that employees are looking for more than a job; they want to know that they are working for a company that cares about its employees, their families, and about the concerns of the public. They are looking for purpose in what they do, and they want to know that they’re with a company that will keep up with their needs during these challenging times. 

How do we approach this shift? Well, we need to get to the bottom of what goes on in our organization. Having 100+ employees with different needs is a lot to tackle, but it can be done. How can we find out the root cause, or causes, of our current situation on a large scale? And how can we do so anonymously, so that employees can tell it like it truly is? We may not always like what we find out, but it’s the only way to get on the path to retaining great, hard-working team members, keeping them not just satisfied, but hungry for more.

Can a survey help with this? Yes, it can. Surveys have helped world-class organizations steer in the right direction to remain the very best. But they did so through intentional action, considering and implementing their employees’ suggestions and ideas, and swallowing their pride by getting rid of unwanted, outdated practices. Surveys can transform raw feedback into actionable data. 

What can we measure with surveys? One of the biggest online survey companies, Survey Monkey, states: “[Companies] can measure satisfaction with benefits, compensation, work environment, opportunities for growth, and other topics related to employee morale. By using a survey and guaranteeing anonymity, employees are empowered to answer truthfully. Feedback obtained from an employee satisfaction survey can be used to improve conditions in the workplace, shape policies, and provide a benchmark for future satisfaction surveys.”

In hospice and palliative care, our employees work in sensitive situations with patients and their families. The greater the employee satisfaction, the more our teams will be able to focus on the things that matter most. They’ll know they work for a company that cares about them as individuals. This, in turn, will drive them to provide the best possible experience, with a positive attitude that patients can see and feel.

The words of Stephen Covey above mean more to us because we know that every single one of our patients deserves the very best palliative and end-of-life care. That means that every one of our employees must be heard. Gathering real feedback so we can make better strategic decisions will ultimately translate into the world class medical care we promise our patients.

The Next Generation Leadership Council’s intergenerational sub-committee has created this survey to gather valuable feedback to help strengthen relationships within the hospice and palliative care workforce. The sub-committee will be using the data collected here in many ways and plans to present some of its findings at NHPCO’s 2022 Interdisciplinary Conference. 

Please take two minutes to complete this survey.

Once you’ve completed the survey, check out NHPCO’s lineup for the 2022 Interdisciplinary Conference, and be sure to register if you want to learn even more strategies for employee recruitment and retention. 

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Ross Hoffman, MBA is the Director of Operations at Hoffmann Hospice, Bakersfield, CA and serves on NHPCO’s Next Generation Leadership Council. 

The Tulsa Shooting: What it Means for Hospice

By Edo Banach  

Yesterday, I had the opportunity to correspond with Kyle Terry, Director of Saint Francis Hospice in Tulsa. The hospice is part of the same health system as Saint Francis Hospital, where this week a gunman murdered four people, injured others, and then took his own life.  

The staff at Saint Francis Hospice is providing grief support to their colleagues in the health system and to the broader community in the wake of this horrific act of violence. This is what hospice staff do, all too often—they quietly step in following a tragedy to help those who find themselves suddenly grieving.  

Whether in Buffalo, Uvalde, Tulsa, or the countless other communities that have been impacted by senseless gun violence, hospice staff are unsung heroes who step up to provide expert support, to help people get through the initial phase of shock and grief, and to begin the long journey of individual and community healing. In this instance, the staff at Saint Francis Hospice is working in a particularly trying situation, as the shooting not only happened in their community, it happened a block away, in the same health system, to colleagues. It is hard to imagine how they are simultaneously managing their own shock, fear, and grief, and providing support to others in need. My heart goes out to them, and I let Mr. Terry know that NHPCO is here to provide any support that we can.  

In my five years with NHPCO, I have shared my thoughts about a few mass shootings. Of course, there have been dozens and dozens of other shootings that I have not written about. Over those years, some things have remained consistent, and others have changed. What has remained consistent is that these tragedies continue to happen, with no end in sight. The political discourse around how to reduce gun violence remains at stalemate. And hospices continue to be resources for their communities in times of tragedy, over and over.  

What has changed is that the COVID pandemic has shifted the discourse on grief in the wake of tragedy. It has become glaringly clear that our country does not have the right resources to support communities in grief, which opens an opportunity for change. NHPCO is leading the charge in calling for a National Strategy on Grief. A National Grief Strategy that shapes policy would help build capacity in communities and direct resources where needed, including for natural disasters, violent tragedies, and deaths from illness. It would help families impacted by the next pandemic, the next deadly tornado, the next shooting, and the next cancer death. It would help the unsung hospice heroes who step up in times of tragedy.  

While we continue to advocate for national policy change, NHPCO has also begun an internal conversation about the role of our organization and the hospice community in the cycles violence. Hospice providers have the deepest understanding of the importance of a good death—how we support the dignity of a person experiencing the end of life and care for their loved ones. Our work is about the value of life, all the way through death. So when we see lives cut short by senseless violence, it affects us deeply. Perhaps we have a bigger role to play. 

Gun violence is the manifestation of a complicated set of factors. As policymakers grapple with gun control measures, waiting periods, background checks, mental health resources, and more, what we can do is stand together as a hospice and palliative care community to demonstrate what an interdisciplinary approach to illness can do to heal.   

There is one small thing you can do today, June 3. In Tulsa, Saint Francis is known as the Pink Palace, and they have asked people wear pink to show that good can overcome evil. So, let’s all wear pink and post pictures using the hashtag #SaintFrancisStrong.  

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Edo Banach, JD, is the President and CEO of the National Hospice and Palliative Care Organization. NHPCO is the leading organization representing integrated, person-centered healthcare, NHPCO gives ongoing inspiration, practical guidance, and legislative representation to hospice and palliative care providers so they can enrich experiences for patients and ease caregiving responsibilities and emotional stress for families. Visit www.nhpco.org. 

Inspired by Hospice Volunteers

By Ben Marcantonio

As a former hospice executive, I can tell you that volunteers are, and always have been, the heart of hospice. It’s important to remember that historically, hospice in the United States started as a volunteer-led grassroots movement. Later, the hospice Medicare benefit was enacted into law, formalizing the hospice system and minimum standards of care. Volunteer support for patients is quite literally a requirement of the Medicare regulations governing hospice care.  

This week, the country celebrates National Volunteer Week. NHPCO and our member hospices nationwide send a heartfelt “thank you” to hospice volunteers. Without you, hospices could not deliver the quality of care that end-of-life patients deserve.  

 As part of our National Volunteer Week celebration, I want to share a few resources with you:  

• The first is a video – “The Gift of Volunteering” – in which Mercedes Ibarra, a volunteer with Silverado Hospice in Irvine, CA, shares her experience as a hospice volunteer.

• The second is a video – "Nikita’s Mission" – about a pet therapy dog who volunteers with Heartland Hospice in the We Honor Veterans program.

•  The third is a list of five inspiring hospice volunteers who were recently honored as at the recipients of NHPCO’s 2022 Volunteers are the Foundation of Hospice Awards. Each honoree’s name links to a write-up about their service. 

In the first video above, hospice volunteer Mercedes Ibarra talks about her patients, saying: “I never knew I could love someone I didn’t know, that wholeheartedly.” That type of connection, that inspiration, that love – I saw that over and over as a hospice leader. That’s why I say that hospice volunteers are the embodiment of the theme of this year’s National Volunteer Week – “Volunteer Faces of Caring.” I hope you are as inspired by hospice volunteers as I am…not only this week, but all year round.  

P.S. If you are a hospice looking for communications resources to support your National Volunteer Week efforts, NHPCO is pleased to offer this NVW toolkit to our members. 

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Ben Marcantonio, MS, MEd, LMFT, is the Chief Operating Officer at the National Hospice and Palliative Care Organization (NHPCO). He joined NHPCO in October 2020, bringing 30 years of leadership experience in educational, healthcare, and social service settings. Prior to joining the NHPCO senior leadership team, he was with Hospice of the Chesapeake where he served as President and Chief Executive Officer (2015-2020) and Chief Operating Officer (2013-2015). Prior to relocating to Maryland in 2013, he served as Chief Administrative Officer at San Diego Hospice and The Institute for Palliative Medicine.