As an RN at TRU Community Care’s Hospice Inpatient Unit, Justin Raff’s days are filled with opportunities to provide life-changing care, but for Justin, the transformative power of such service extends beyond the workplace. Every year, he volunteers as an operating room nurse with Uplift Internationale, a Colorado nonprofit, on a mission to the Philippines. Their goal? To perform cleft lip and cleft palate surgeries on pediatric patients in need.

Justin’s journey with Uplift Internationale began six years ago, sparked by a former colleague—a Filipino nurse—who introduced him to the organization. Since then, he has dedicated himself to this cause, embarking on his third trip with them this past January. Each trip is entirely self-funded; Justin takes precious time off from work and covers his travel expenses. This year, he created a GoFundMe page to raise funds for his mission.

The impact of Uplift Internationale’s work is impressive. Beginning Sunday morning with patient screenings, the team works 14-hour days performing surgeries that are life-changing for the children and their families. Their roster comprises volunteer nurses, surgeons, doctors, and even non-clinical staff — the youngest of whom this year was 13-years-old. Together, they performed over 100 surgeries during the week.

The organization brings a high degree of service to their patients. Not only are all surgeries provided free of charge, but the organization also covers travel expenses for patients and their families. For those unable to undergo surgery immediately due to illness, Uplift ensures that they receive any necessary medication and arrange for future treatment at their permanent clinic in Manila.

In a society where cleft lips and palates are highly stigmatized, Uplift Internationale offers hope and acceptance. Justin recalls the poignant sight of children arriving at the hospital clutching makeshift coverings – washcloths and children’s blankets – for their condition, only to find these abandoned on the operating room floor after surgery—symbols of newfound confidence and freedom.

When asked if he would continue volunteering each year with Uplift Internationale, Justin replied, “Absolutely. Though I may take next year off to focus on my studies, this work is a

lifelong commitment for me.” Justin, who plans to pursue a doctorate of nursing practice at CU Anschutz this year, embodies the same spirit of service and compassion for patients and families at TRU Community Care. It’s no wonder that his work is also his passion.

But Uplift Internationale’s work doesn’t stop in the operating room. Volunteers like Justin also bring donated clothes, transforming hospital corridors into free shopping malls for patients and their families. Additionally, they distribute hundreds of pairs of donated reading glasses to those in need, further enhancing the impact of their mission.

When asked if he would continue volunteering each year with Uplift Internationale, Justin replied, “Absolutely. Though I may take next year off to focus on my studies, this work is a lifelong commitment for me.” Justin, who plans to pursue a doctorate of nursing practice at CU Anschutz this year, embodies the same spirit of service and compassion for patients and families at TRU Community Care. It’s no wonder that his work is also his passion.

 

by Rachel Stackhouse, TRU Clinical Educator

If you reside in or travel to remote regions of our country, you’re likely aware of the limited access to healthcare. While those of us in the Denver metro area enjoy a plethora of options, our neighbors just an hour east or west often find themselves with little to no healthcare choices. The healthcare industry, already under pressure from reduced reimbursements, has seen numerous hospice providers shutter their operations in recent years. One such instance is the closure of services in the Estes Park area by a local organization. Estes Park Health announced in October its decision to discontinue home health and hospice services due to financial difficulties. As of December 31st, their hospice services ceased, prompting TRU Community Care to step in with innovative solutions to deliver hospice care to the community in mid-January.

Rural areas have long been identified as an area of concern for public health. The CDC reports that 15% of Americans live in a rural area, and those who live rurally have an increased risk for injury-related death, heart disease, cancer, stroke, and other illnesses common to hospice patients. The CDC also highlights that the population in these areas tends to be older and frailer in general.¹ The National Center for Frontier Communities has been advocating for remote areas since 1997.² While there is no clear-cut definition of a “Frontier Community,” as this varies by state, in general, a Frontier Community has fewer than six people per square mile or is greater than 30 minutes or 30 miles to common necessity services. In 2011, each state office determined which of their counties were considered Frontier. When all were totaled, the United States had 46% of its land in Frontier areas, mostly concentrated in the western states. ³ Since these remote communities are at a higher risk for injury and chronic illnesses, there ought to be a way to support them; and indeed, there is.

Supporting remote communities is not new for TRU Community Care. TRU’s Tele-Care program launched in 2019, and when COVID hit in 2020, changing the way healthcare functions, TRU was positioned to provide meaningful care remotely. Since then, telehealth has continued to be a staple for some of our patients, and TRU Tele-Care includes remote patient monitoring, vital signs, symptom questions related to the diagnosis, and immediate access to an RN. When we combine this powerful tool with field staff willing to travel to remote areas, we can effectively support our neighbors who live remotely.

In 2021, TRU partnered with an organization in Kansas to provide telehealth monitoring for an area designated as a Frontier Community. During this effort, TRU nurses were able to detect slight changes in a patient’s condition and alert the Kansas team in advance of further decline. Our ongoing commitment to assisting patients who have lost access to their local hospice provider is exemplified in our current model. Although it’s often the case that individuals in remote areas prefer minimal social interaction, those opting for remote care monitoring can benefit from immediate access to nursing assistance. This support ranges from simple tasks like medication refills to more intricate matters such as wound care education or understanding new symptoms and prognoses with the guidance of our nurses. TRU Tele-Care offers a high level of flexibility tailored to the patient’s preferences, whether they seek minimal contact or daily interaction. With a nurse available at a moment’s notice, the patient and family have control over the level of support they receive.

It may be tempting to perceive these issues as a distant, national concern, but closer examination reveals that many Coloradans are directly impacted by rural health disparities. The Colorado Rural Health Center’s data shows that 73% of our counties are rural, with 23 out of 64 designated as Frontier Communities. Our rural residents are 14% more likely to succumb to coronary heart disease compared to their urban counterparts.⁴  While there are regulatory constraints on how far TRU can extend its in-person care, my tenure of over 7 years at TRU underscores our unwavering dedication to the community. TRU Community Care has earned recognition for catering to all individuals in need of hospice services, irrespective of wealth or geographical proximity. We are committed to continually exploring innovative approaches to serve our remote neighbors to the best of our abilities.

Sources:

1. Centers for Disease Control and Prevention. (2023, November 28). About rural health. Centers for Disease Control and Prevention. https://www.cdc.gov/ruralhealth/about.html
2. National Center for Frontier Communities. National Center For Frontier Communities. (2023, December 13). https://frontierus.org/
3. Healthcare access in rural communities Overview – Rural Health Information Hub. Overview – Rural Health Information Hub. (2022, November 21). https://www.ruralhealthinfo.org/topics/healthcare-access
4. Health disparities in rural Colorado – Coruralhealth.org. Health Disparities in Rural Colorado. (n.d.). https://coruralhealth.org/wp-content/uploads/2014/08/IHI-poster-Colorado-Rural-Health-Center.pdf

 

Last Thursday, TRU Grief Services and dedicated volunteers presented a poignant and meaningful Lights of Life Remembrance Service, providing solace and support to attendees as they honored and cherished the memory of their departed loved ones. The service, held at Unity Columbine Spiritual Center, was guided by the compassionate leadership of Grief Counselor Vanessa Schmautz and Grief Services Director Kathryn Messman, who warmly welcomed all participants. Heartfelt readings were delivered by Grief Counselor Joan Hummel, Volunteer Jean Manifesto, and Volunteer Bill Madura, and Grief Services Intern Jeff Hudson took the stage with Vanessa to read the names of the departed. Van Currell, also a Grief Services Intern, led attendees through a Ceremony of Light, crafted to honor the darkness of grief while illuminating the light of hope stemming from courage, cherished memories, and enduring love.

Participants adorned a memory table with photographs and mementos of those they had lost, and the true heart of the service unfolded as individuals stood to vulnerably share memories and stories of their departed loved ones.

Harpist Joan Hunderhausen brought rhapsodic melodies to the proceedings and singers Roberta Lott-Holmes (TRU Clinical Supervisor) and Hayley Voss (TRU Volunteer) sang a stirring rendition of James Taylor’s “You Can Close Your Eyes.” As the evening ended, both attendees and participants departed the hall moved, carrying with them the comforting embrace of shared remembrance and support.

by Rachel Stackhouse, TRU Clinical Educator

There’s a concept I’ve been rolling over and over in my mind lately that will be of interest to caregivers and healthcare workers. It’s the idea of engaging compassion over empathy to prevent burnout. I’d like to present you with what I know on the topic, and then allow you to decide for yourself when to tap into compassion over empathy. This idea was first presented to me in an article from Vital Hearts, a local training initiative dedicated to caring for healthcare professionals 1.  These are experts in helping health professionals overcome vicarious trauma and compassion fatigue. Their world revolves around ensuring that health workers have the tools they need to process traumatic situations to allow an effective and healthy person.  

 When we think of trauma, often we think of “big T” traumas: abuse, car crashes, natural disasters. A relatively low proportion of the population ever experiences those things. On the flip side, when I refer to trauma here, I’m talking more of the “little t” traumas:  the family who suddenly lost their matriarch, the patient who came for a hip replacement and ended up in cardiac arrest, the sudden diagnosis of a chronic illness, the disease no doctor can nail down a diagnosis for. These are the traumas that weave into many lives, and they are the things we see in healthcare every day. The frequency of these “little t” traumas are why we need to be aware of how we show up to serve our patients, and where empathy vs compassion comes in. Because we are exposed daily to human suffering, to the unfair nature of the world, and to the way bodies can betray us, it is worth considering how to balance the emotional load. It’s a balance between protecting our own hearts, while simultaneously opening the heart enough to provide meaningful care and connection.  If you’re not a healthcare worker but a caregiver to your loved one, this topic will help you learn how to tend to your heart in your caregiving role.  

 This is a massive topic; one for which much more could be said about self-care, boundaries, and the like. But for right now let’s get an understanding of the difference between compassion and empathy. Some synonyms for compassion are understanding, care, concern, mercy, kindness, humanity 2. It’s specifically being aware of another’s distress with a desire to resolve it. Some synonyms for empathy are understanding of, feeling for, identification with. It’s specifically the ability to take on the feelings of another. To do that, you must connect with something in you that knows how the other person is feeling. When I connect to someone with compassion it motivates me to alleviate the distress, but I remain within my own emotions. Conversely, when I connect to someone with empathy, I take off my prior emotion to put on theirs. My body experiences the weight of anxiety in my chest, or the tension of my muscles in anticipation of pain, perhaps. Now imagine doing this multiple times a day with every patient encounter you have. If we approach our work consistently form empathy, burnout is highly likely. We each need to take an honest look at our default settings when working with those in our care to identify the impact this work is having on us. Working from compassion rather than empathy helps us to protect our own bodies and our own emotions so that we can remain good, effective people.  

 The US Surgeon General has a 76-page document titled, “Addressing Health Worker Burnout” written in 2022. The document explores what various entities  –  healthcare employers, federal and local governments, health insurers, tech companies, communities, family members, and the individual health worker- can do to address the problem. In an opening line, the document reads, “even before the COVID-19 pandemic, the National Academy of Medicine found that burnout had reached ‘crisis levels’ among the U.S. health workforce, with 35-54% of nurses and physicians and 45-60% of medical students and residents reporting symptoms of burnout.” 3  

 While I’d urge you to follow the citation below and read parts of the document for yourself, I want to highlight what they recommend for the individual health worker.  Recognizing signs of distress and burnout in yourself and your colleagues, using “psychological PPE,” and adding healthy rituals to your day are among their recommendations. Such rituals can be as simple as pausing in your car after leaving a visit to actively realize how the visit impacted you or asking yourself “what do I feel, and what do I need?” It is so easy to stuff down the emotions to push forward to the next task, but if this is all the attention you give to the emotion, you’re simply stuffing things away to create a mess to work though later.  

 Another strategy is to stay connected and reach out for help. This one is especially important in care settings like TRU, as most of our care professionals are highly autonomous in the field, rarely having face-to-face interaction with other colleagues. This point highlights the need to lean on your team members and speak up on days when you’re feeling particularly burnt out. That’s how your team will know to give you some added support. A 10-minute call to your team chaplain or a fellow nurse can sure make a huge difference when feeling burdened.   

 Another is to prioritize moments of joy and connection. I love this one because it gives you permission to add joy into your day! When working with new-hires, I often recount my ritual of adding joy by creating my own “Toffee Tuesday.” I had a patient who was particularly challenging, and she lived close to my favorite drive-through coffee kiosk. Since I often ordered a toffee drink and saw this patient (at least) every Tuesday, I created a weekly celebration that added very little to my day yet created a spark of joy for me. Those are the moments no one can create for you; you must value your joy enough to prioritize it.  

 The next intervention listed is to get back to basics with good health habits. Do you have to park and walk into a patient’s home/ facility? Do yourself a favor, and park further away or take the stairs to get your body moving. Bring a healthy lunch and nourish yourself every 3-4 hours, even if it is while you’re texting and driving. (Seriously though, be safe). The last intervention listed is to use your voice to advocate for positive changes in your workplace and community. This one feels particularly hard when you’re already feeling burnt out, but the truth is, if you’re feeling burnt out there are definitely others who have been there and can connect with you to innovate positive change.  

 I connected with two experienced TRU nurses, Sandee (15 years) and Becky (21 years). They emphasize the importance of embracing change for longevity in this field. According to Becky, “There are constant changes within the organization, the healthcare industry, and patient and family expectations. Knowing and accepting that change is coming and will keep coming increases motivation to stay on. Recognizing the unique opportunity, we have to care for people at such a final point in a human’s existence is precious. I was explaining to my son that hospice nurses are called to this work just like chaplains and pastors.” 

  Sandee echoes Becky’s sentiments, emphasizing the need to avoid seeking constant comfort: “We, like our patients, must learn that life is uncertain, death is uncertain, and we have no control. We just look to find comfort in the present moments. I couldn’t agree more that this work is special and a calling. It teaches us that life is fragile – we only have today, and we do the best we can and learn from every one of our patients, families, and disease processes with compassion for ourselves to make mistakes and be honest with ourselves and families.” 

  Sandee adds a touch of joy to her approach, using humor to help both herself and families navigate distress. By demonstrating comfort in challenging situations, she helps families realize they are not alone in their suffering. Sandee’s ability to maintain composure in distress highlights her internal work of using compassion for motivation and employing psychological PPE to create rituals that enable her to be fully present with families. 

While there are things that can be done at a systems level to improve burnout, much of the onus is on the individual health worker to advocate for yourself. I whole-heartedly believe there are moments when empathy is required or automatically generated, and I am challenging you to consider finding a rhythm for compassion in your practice, donning and doffing psychological PPE as needed. This is such a subtle shift in mindset, but I believe it will add an interesting level of self-awareness to your work today.  

 Further reading on how your body interprets emotions: 

The Body Keeps the Score by Bessel van der Kolk
The Wisdom of Your Body by Hilary McBride
Waking the Tiger by Peter Levine  

 References: 

1. What we do: Vitalhearts® the resiliency training initiative: Colorado, USA. VitalHearts. (n.d.). https://www.vitalhearts.org/what-we-do  

1. Merriam-Webster. (n.d.). Compassion definition & meaning. Merriam-Webster. https://www.merriam-webster.com/dictionary/compassion  

1. Addressing health worker burnout -The U.S. Surgeon General’s Advisory on Building a Thriving Health Workforce. Addressing Health Worker Burnout. (2022). https://www.hhs.gov/sites/default/files/health-worker-wellbeing-advisory.pdf  

Our sixth annual TRU Cares Fundraising Luncheon, presented this year by Home Instead, took place on October 19th, and we’d like to thank all who were able to attend, especially the sponsors and donors who made the event possible.

This year’s Luncheon centered thematically around community and TRU’s community partnerships. TRU President and CEO Scott Gresser spoke about two such partnerships: TRU’s partnerships with Rocky Mountain Refuge and with VCP Village – Longmont, whose work is focused on providing care to the unhoused and to veterans, respectively. Please enjoy this short video about these organizations and the extraordinary work they are doing.

Thank you again to our sponsors, donors, founders, board members, volunteers, staff, advisory council members, patients, participants, and families. We are grateful to be on this journey with each and every one of you.

by Rachel Stackhouse, TRU Clinical Educator

TRU Community Care (TRU) recently celebrated the first nurse graduate through our new nurse residency program. With a focus on hospice, palliative care, telemedicine, home health, and inpatient care, TRU’s New Graduate Nurse Resident Program offers additional training, clinical experience, and mentorship to recent nurse graduates to help build knowledge and competency during their first months of practice.   

In the past, new graduates were not often hired for hospice work as they lacked the skills to work autonomously in the field. Instead, they were counseled to find their first job on a medical-surgical floor, generalized care unit, or long-term care facility, to get the most well-rounded experience. While this is still common advice, the reality is that more specialty areas of nursing are welcoming new graduates today – hospice among them. And while med-surg or long-term care are great environments for being exposed to various clinical skills, they are not what all nurses are passionate about. I’ll use my experience as an example:   

While completing nursing school, I suspected the hospital was not for me, and that hypothesis was confirmed during my clinical rotations through the hospital. When I finally got to my hospice clinical rotation, I was in heaven! My life became whole when I got to care for those at the end of theirs. But when I graduated from school, I followed the advice given to so many nursing students: get a job in med-surg. I did, and I shriveled. I quickly realized this was the wrong job for me. Hospice called out to me for several years before I finally felt I had the experience needed for it. That was seven years ago, and I cannot imagine being satisfied in any other nursing specialty.  

TRU’s year-long residency is divided into three trimesters. During the first two, the resident works alongside an experienced nurse — four months at TRU’s inpatient unit followed by four months in the field (in-home and facility settings). At TRU’s inpatient unit, residents develop skills in managing symptom crisis. This may be pain crisis, agitation, or wound care challenges. They also develop a thorough knowledge of hospice medications and how to go into stressful or tense situations in a way that’s helpful to the patient and family. While in the field, they polish their assessment skills, time management, family care-planning conversations, and learning when to ask for help. During these months, residents come to embrace mistakes as learning opportunities, find areas of growth, catch the near-miss, and identify when they’re bumping up against the edge of their scope of practice. 

The final four months of the residency are spent in independent practice, during which the resident gains further confidence and competency, while still having all the resources at their fingertips as support. During these 12 months, the resident is enrolled in the University of Iowa’s virtual residency program with a cohort of new graduates across the country. The educational program covers topics such as quality, evidence-based practice, critical thinking, leadership, work-life balance, and more. With their cohort, they share struggles and support from the techniques they’ve been perfecting in their own practice.  

The World Health Organization, the Institute of Medicine, and the US Department of Labor have all published articles detailing the value of supporting newly graduated nurses. * In an article titled, “Nurse Residency Programs: Providing Organizational Value,” the Delaware Journal of Public Health reviewed this data and discussed what makes a valuable Residency Program1. The authors state, 

“…a healthy work environment is essential to retain employees. Nurse residency programs emphasize enculturation to practice area and organizational culture and prioritizes relationship building. This type of program drives job satisfaction despite the challenges of constant workforce turnover and stressors thereof. Finally, engaged nurses who have successfully transitioned into their new role are prepared with both confidence and competence to deliver quality patient care.” 

This is why we’ve embraced the nurse residency program. TRU’s culture is one of collaboration and relationship-building. Though workforce turnover and stressors in the field abound, we relish the prospect of helping each new nurse find their footing and the privilege of setting a sturdy foundation for these nurses, not just for the benefit of TRU but for the whole nursing community. This is just one more way that TRU is caring for our community.    

Asked what advice she’d have for a nurse fresh out of school, our new nurse residency graduate replied, “Don’t be afraid. If you have a heart for hospice, just go for it. You’ll enjoy it and be happier doing what you love.”  

If you’re a nursing student a few years from graduation, TRU welcomes you to explore hospice via externships and internships. If you’re a new graduate nurse debating jumping into hospice, I say jump! When the time comes, we will be here to guide you into sound practice and a fulfilling career.  

 

 *If you’re interested in more research, follow the cited source below and refer to the many documents listed in their references.  

1. 1. Sutor, A., & Painter, J. (2020). Nurse residency programs: Providing organizational value. Delaware Journal of Public Health, 6(1), 58–61.  

https://doi.org/10.32481/djph.2020.04.013 

Thank you for once again joining us for TRU’s annual butterfly release and memorial. Over 450 beautiful painted lady butterflies were released in memory of loved ones. Many participants gathered with families at Whitetail Park and enjoyed a healing sense of community. Some honored loved ones at cemeteries and memorial sites, and others found comfort in their own backyard, in the mountains, and elsewhere.

Grief Counselor Joan Hummel reminded participants that even in the midst of grief, hope is not forgotten. We have not lost the ability to be happy. She shared that happy thoughts are transformational, especially if we give ourselves permission to have them.

Read Joan’s talk, Hope in Grief, here, and please enjoy this slideshow on TRU’s YouTube Channel:

Thanks to Chris at Tone Images for taking many of these photos and to Laurie Rugenstein for again making beautiful music at the event on her flute.

Thank you also to our sponsors – Ewing-Leavitt Insurance Agency, Horan & McConaty Funeral Service, the Daily Camera, Home Instead, Gregg and Kelly Rogers, Pete Kelley, Scott and Marlene Gresser, Lily Kurylko, Jerry and Lilliann Osborne Durst, Kitty deKieffer, and the Heyart Family – for their support, and thank you all again for participating in this special event.

There’s no doubt, the mention of hospice brings up ideas for people that often they’d rather avoid. Whether it’s memories of loved ones who have been on hospice, the stories we hear on the street, or the things we’ve seen in movies, hospice often recalls the notion that this person is leaving our world imminently. I felt this sensation about a month ago. A family member was being admitted to hospice, and my adrenaline surged as I wondered how quickly she could be gone, how I could help, and if I’d get one last chance to see her.

I should mention that I’m a hospice nurse. I know that patients can be in hospice for many weeks or even months. I’ve cared for the patients who have been in hospice for years. Such thoughts, especially from someone who works in hospice, expose how deeply our preconceived notions about hospice are ingrained.

I’d like to challenge our cultural view on the brevity of hospice. It is not a touch on third base as the patient rounds the corner to home plate. Although this does happen, and we provide meaningful care for those patients too, hospice is best experienced as the honeymoon location where you settle in, explore, get comfortable, and then go home. So, let’s ponder some reasons why hospice care is often delayed, and then we can look at the benefits that are in store for those who sign onto care sooner than later.

We don’t need outsiders; we can manage on our own.

If your doctor is talking to you about hospice, it means they’re coming to a point where your care is progressing past their circle of expertise, and they’d feel best knowing someone who is well-versed in the end-of-life process is taking care of your needs. Palliative care is the umbrella term over hospice, and it is its own specialty for good reasons. But this is just where hospice begins. Medical care is good, but holistic care is the coveted jewel that every area of healthcare aspires to provide. Hospice thrives on the holistic, interdisciplinary model. Physician, nurse, social worker, chaplain, nurse aid, and volunteers become a seamless team that helps you and your family discover your goals, your comfort, and your needs so that you can navigate this transition with what feels valuable to you. Yes, you could manage on your own, but when facing advancing illness, new symptoms, emotional turmoil, and questions about what needs to be done after the patient has passed, I’d much rather the family have a team of experts who can help to navigate these ever-changing waters.

It feels like we’re giving up if we transition to hospice.

The philosophy behind hospice is simply to not prolong life; nor hasten death. The focus is on the quality of life for however long that life remains with us. Culturally, we are driven towards technology, innovation, and fixing. So it’s no surprise that the idea of removing those things feels like “giving up.” As much as we’d like to believe we will live forever, the truth is that each one of us will come to the point of needing to allow the natural process of life to run its course. This point will be different for each of us, and a question you might ask yourself is, “what would a good death look like for me?” If it’s fighting to the last minute in a hospital setting, you have the freedom to choose that. If it’s being surrounded by family in your home, you have the freedom to choose that. This question can help give clarity to how you want the end of life to look, should you be given the choice.

I also want to ask you what it would mean to give up? Wouldn’t that be pushing away all medical care, stopping all medications, and reverting back to the way life was before illness became such a large part of the journey? Hospice is not that. We continue the medications that add value to life, whether it’s

related to the diagnosis or not. Nurses visit regularly to assess and evaluate what is needed; social work helps with navigating the emotional and resource needs; and chaplains bring spiritual support in whatever form is valuable to you. Knowing this, it’s less about giving up and more about taking the next step. Transition is a challenging thing for most people, and transitioning out of curative care is a major decision — one that we often see people pause over and feel reservations about. How can you know if it’s time to take the next step? If focusing on the things that bring meaning to you sounds good, if finding interventions that help minimize pain sounds nice, if spending time with the people you love most sounds important, then it’s time to consider taking the next step.

We don’t know the current prognosis.

In a culture where technology, treatment, and curing disease are the focus, it’s easy to make this the center of your attention, rather than the whole picture. Many physicians struggle to bring up the topic of prognosis or have their own experiences with death that prevent them from initiating good conversations with their patients about the bigger picture. This care team that has been providing care for you is your team, and sometimes the patient is the one who needs to ask about prognosis. It is always your right to ask and understand whether things are improving or if treatments are no longer helping. Combining this with discussions about your goals and what feels important for you right now can yield very healthy discussions with your team of clinicians. Often, patients will feel this shift in their body or know the point when their body is feeling frail and increasingly weak. There are specific criteria to be eligible for hospice, so it is not possible to enter hospice too soon. The systems that are in place will prevent hospice admission if the prognosis is not likely to be six months, or less. If this is the case, TRU also provides palliative care, which is designed to provide support for as long as the patient would like to receive it. Palliative care is for those who have a chronic illness that is not yet terminal. When that illness has progressed enough to be deemed terminal, then hospice can begin. Regardless of where you are in the spectrum of illness, there are resources to support you and your family.

What are the benefits?

There’s clinical and research data to support early hospice admission, and then there’s what I’ll call tribal knowledge — things we in hospice have known to be true without research telling us so. Let’s start with clinical research. A study which is frequently referred to on this topic shows early palliative care resulted in longer median survival, and improved quality of life over standard care. In addition, those who received standard care exhibited more depressive symptoms than those who were in palliative care1. This study had a generous sample size of 151 patients who all had the same primary diagnosis of malignant non-small cell lung cancer. While not everyone will have this disease in the community setting, it does allow for a fair comparison of symptoms and expected disease progression within the study.

Another study looked at frequency of unscheduled encounters with emergency care among patients with end stage lung cancer. These participants were not enrolled in hospice and 68% of them required emergency help near the end of life. Most frequently, pain was the cause for seeking care. Of those who got emergent care, 20% required hospitalization, often because of shortness of breath.2 Had these patients been enrolled in a hospice program, they could have remained at home with supportive care to manage symptoms outside of the hospital. Lung cancer is one of the most common malignancies and often has a profound impact on quality of life. This is why studies often focus on this diagnosis, but it also serves as a good benchmark for other malignancies and diseases of the heart and lungs, which are very prevalent in our society. I’d encourage you to read this study for yourself to see the case studies highlighted.

There are many medical studies and reasons for palliative care, but I’d like to also highlight the research on psycho-social aspects of hospice. Chaplains and social workers are often overlooked when considering hospice care professionals. Perhaps these supportive roles are considered optional, and indeed, visiting with either discipline is not required. You may be surprised to know that they too help ease suffering. Dr. Daniel Siegel is a well-known professor of psychiatry and has spent much of his career highlighting the power of neuroplasticity.3 His research suggests that compassion can create new neural patterns, new neural receptors, and improved overall well-being. By developing therapeutic relationships with a chaplain or social worker, patients and families effectively ease suffering. We know that psychological suffering exacerbates physical pain, so this ease of suffering is both physical and existential.

Finally, let’s look at the tribal knowledge — things that have been proven true to our clinicians over time. In describing the impact of long-term hospice care, TRU Chaplain Janie Blakely, says, “the core of longer length of stay, from my perspective of offering emotional and spiritual support in the home, is that it enables the care relationship to emerge as primary again. It reveals that we are not just a medical service agency providing nursing care and external resources to the dying, but that we are a holistic care team compassionately accompanying patients and loved ones at end-of-life so that each day may be the best day it can be. This sense of journey comes through a relationship of trust, caring, mutuality, and connection that is greatly strengthened by time to build a rapport and nurture trust. We in hospice know that pain ameliorated in one pain center positively correlates to comfort for other pain centers. So, the deeper the relational connection and trust, the deeper the compassion and comfort is felt.” This beautifully captures the power of the interdisciplinary team. Where one discipline brings relief, all the other disciplines benefit. Most importantly, where one team member brings comfort to a patient, there is a snowball effect building comfort, relief, and peace for the family unit in our care.

Conclusion

We have tinkered with many topics in this article, and much more could be said. We have considered the common reasons why families feel they don’t need hospice, we’ve looked at research, and we’ve considered the power of therapeutic relationships. My desire is for you to see a new perspective on palliative care. From physical comfort to spiritual well-being, as the hospice team working with a patient gets to know the dynamics at play, they can tailor the experience to what exactly is needed. When illness becomes terminal there is every reason to explore hospice sooner than later.

The dying process involves a type of labor for the family, but especially for the patient. There is a specialty of care, and a need for new information and teaching for the whole family. Hospice creates a space for the one who is leaving this world to have closure, have symptoms managed, and have quality days with their family. This is what the hospice team loves and why they chose this specialty — the ability for a patient and family to truly live and create the last memories with all the support they need.

References

1. Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., & Jackson, V. A. (2010, August 19). Early palliative care for patients with metastatic non–small-cell lung … The New England Journal of Medicine. https://www.nejm.org/doi/full/10.1056/NEJMoa1000678

2. Borneman, T., & Koczywas, M. (2023). Palliative care in the New Era of lung cancer treatment. Journal of Hospice & Palliative Nursing, 25(3). https://doi.org/10.1097/njh.0000000000000945

3. Siegel, D. J., & Drulis, C. (2023, February 3). An interpersonal neurobiology perspective on the mind and Mental Health: Personal, public, and planetary well-being. Annals of general psychiatry. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9897608/

In this latest issue of TRU Talk, 25 TRU employees (and significant others) come out to pound nails in the creation of tiny homes for Veterans at the Veteran Community Project Village in Longmont, two new TRU board members (say that five times fast!), and more news from the TRUniverse!

Check it out here.