An Expert’s Bona Fide Guide: Life as a Hospice & Palliative Care NP
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“I know what my job is, and I know that my patients are not going to live forever. But I go in knowing that I have a very special place in their life and I feel blessed to be able to go into people’s homes and to share their life and their stories. It’s very personal. It’s an amazing thing to be involved in.”
Cammie Rausch, DNP, Nurse Practitioner at the Rocky Mountain Regional VA in Denver, CO
Palliative care is a medical specialty focused on improving the quality of life for patients facing serious illnesses and the side effects of their treatment; hospice care focuses on the palliation of terminally ill patients towards the end of their life. Both are of critical importance.
Approximately 90 million Americans live with a serious illness, and that number is expected to more than double over the next 25 years as the Baby Boomers age through retirement and into old age. It’s not just the Baby Boomers driving demand for more palliative care, either: according to the Centers for Medicare & Medicaid Services (CMS), between 19 and 50 percent of non-elderly people have a preexisting health condition including life-limiting and chronic illness.
The holistic, patient-centered approach of nurse practitioners (NPs) makes them ideally suited for hospice and palliative care. In treating patients, they incorporate a wide range of therapies to address common symptoms like pain, nausea, anxiety, and depression.
Palliative and hospice care, as specialties, allow NPs a great deal of scope and autonomy, especially in states where they are allowed to prescribe and work more independently. And many NPs who choose to specialize in palliative and hospice care find it aligns with the reasons they got into healthcare in the first place: to deliver care in a patient-centered, whole-person environment that focuses on comfort and quality of life.
To learn more about the work, advocacy, and future of hospice and palliative care NPs, read on.
Meet the Experts
Constance Dahlin, MSN, ANP-BC, ACHPN, FPCN, FAAN
Constance Dahlin is a palliative care consultant, educator, and palliative nurse practitioner. She is a consultant to the Center to Advance Palliative Care (CAPC) in community-based care and education, and co-director of the Palliative Care APRN Externship.
Dahlin is co-editor of the Oxford University Press Advanced Practice Palliative Nursing and edited the second and third editions of the National Consensus Project’s Clinical Practice Guidelines for Palliative Care. She authored the 2021 Palliative Nursing: Scope and Standards of Practice, Competencies for the Palliative and Hospice APRN, and the Competencies for the Palliative and Hospice RN, as well as the 2017 Hospice and Palliative APRN Professional Practice Guide.
Dahlin was one of 30 individuals named as a Visionary in Hospice and Palliative Medicine by the American Academy of Hospice and Palliative Medicine (AAHPM) for their 30th Anniversary in 2018. She is a fellow of the American Academy of Nursing and a fellow of Hospice and Palliative Nursing.
Cammie Rausch, DNP, AGPCNP-BC, ACHPN
Dr. Cammie Rausch is a nurse practitioner at the Rocky Mountain Regional VA in Denver, CO. She currently serves chronically ill veterans in their home through a program called Home Based Primary Care. She is also an instructor at the California State University Shiley Haynes Institute for Palliative Care.
Dr. Rausch received her BSN from Washington State University, and both her MSN and DNP from the University of South Alabama with a subspecialty in palliative care. She has 20 years of experience practicing in nursing, with 17 years of hospice and palliative care experience.
The Role of Hospice & Palliative Care NPs
Palliative care can take place in both inpatient and outpatient settings. In inpatient settings, palliative care NPs generally work as part of a collaborative team that can include physicians, nurses, social workers, and spiritual care advisors. This team assists patients who are often at a crossroads in their illness journey, and helps them set goals and secure treatments that meet those goals.
“When a patient is diagnosed with cancer, they might be given radiation and chemotherapy, which can have serious side effects like fatigue, nausea, pain, and decreased appetite,” Dr. Rausch says. “While an oncologist is adept at treating the cancer, they’re not always as focused on treating the symptoms. In a perfect world, that patient should also get a referral to a palliative care specialist to help manage those symptoms, so they could have a better quality of life. If your symptoms are managed better, you’re able to heal better. That’s palliative care.”
While patient encounters in inpatient palliative care may be episodic and brief, outpatient palliative care (which can include hospice care) is very hands-on, and often occurs over a longer period of time. Especially in community-based settings, palliative care teams can be led by hospice and palliative care NPs who work with social workers and other clinicians as needed.
“Particularly when you get into the communities and rural areas where there aren’t a lot of physicians, that’s where NPs can really shine,” Dahlin says.
“Just by our training as NPs, I feel that we are very well-suited for this specialty,” Dr. Rausch says. “Palliative care and hospice care are still not widely available or widely known about, but NPs can really help broaden the field and be good patient advocates for greater accessibility.”
The Value of Hospice & Palliative Care
Both palliative care and hospice care have been shown to improve patient outcomes. A 2019 meta-analysis of randomized controlled trials found that patients with advanced cancer who received outpatient palliative care lived longer and had a better quality of life than similar patients who did not receive such care. And the use of hospice care during the last six months of life has been associated with improved patient experience, including satisfaction and pain control, as well as clinical outcomes of care, such as decreased ICU usage and lower hospital mortality.
“A lot of people think that hospice means we hook the patient up to morphine, and then sit around and sing kumbaya,” Dr. Rausch says. “And that’s just not really it. Hospice is more about aggressive symptom management at the end of life, to have a better quality of life. It’s holistic in that we care for the patient and everything around them.”
Palliative care most commonly deals with patients who have illnesses such as cancer, heart disease, Alzheimer’s, Parkinson’s, and diabetes. But it may be appropriate at any age, and at any stage in a serious illness. Over 80 percent of hospitals with more than 50 beds report having a palliative care program, and the ethos of palliative care can extend into almost every area of nursing.
“As an NP, no matter where you practice, you’re going to be doing some primary palliative care,” Dahlin says. “That’s just the nature of nursing practice. Palliative care touches everything, whether people will think about it or not.”
Life as a Hospice & Palliative Care NP
Palliative care, and especially hospice care, can involve some difficult decisions and challenging conversations. Hospice and palliative care NPs are well-suited for this: nursing has been ranked as the most trusted profession in America for 19 years in a row, and NPs who specialize in this field are experts in guiding patients to the goals and decisions that are best for them.
“In the United States there’s still this vision that death is optional,” Dahlin says. “But no matter what our politics are, we are born into this world and we will leave it. The question then is what does that path look like?”
“One of the biggest jobs as a palliative care NP is to talk about goals of care, and to really listen to what the patients want,” Dr. Rausch says. “When I first meet a patient, I tell them that this is their journey, and they’re driving, and I’m just along for the ride. I’m with them to the end, and they can dictate how we go, and how we get there.”
Hospice and palliative care NPs need to have sharp clinical skills, but they also need to be adept at managing personal relationships: they’ll interact not only with patients but with their family members, too.
“It really can be a lot of fun, stepping into a relationship with a patient and family that you don’t know,” Dahlin says. “You’re stepping into the middle of a play, and all this stuff is happening. You have to figure out the cast of characters, their roles, and frameworks. You start to color stuff in and determine how the pieces come together according to what they want, and not what we as NPs may want for them.”
Advocacy Issues for Hospice & Palliative Care NPs
One of the top advocacy issues for hospice and palliative care NPs is increasing awareness of and access to hospice and palliative care. A 2015 report by the Kaiser Family Foundation found that 90 percent of adults believe that healthcare providers should discuss end-of-life issues with their patients, but only 17 percent of adults say they’ve had such conversations. Hospice and palliative care NPs are pushing to remove the fear from such discussions and push them into normalcy.
“We need more palliative care NPs who work in the hospital and work in the community,” Dahlin says. “By having palliative care NPs in geriatric clinics, in pediatric clinics, and in heart failure clinics, patients can start to see palliative care as a natural extension of traditional care.”
Access to hospice and palliative care is an even more severe issue in marginalized communities. Marginalized communities include patients who are Black, Indigenous, and people of color, but they also include patients with serious mental illnesses, dual diagnoses, substance abuse disorders, and other complicating factors.
“There are a lot of people whose experience with healthcare has not engendered trust, and those are the people who get diagnosed late,” Dahlin says. “But then how do we still help them foster their own goals, with their own way of integrity? It’s a challenge because some of the resources still aren’t there.”
The Future for Hospice & Palliative Care NPs
As the Baby Boomer generation ages, there will be an even greater need for hospice and palliative care NPs. While Baby Boomers have a longer life expectancy than previous generations, they also have higher rates of chronic disease and lower self-rated health than past generations.
“There’s definitely a shortage of palliative care and hospice providers,” Dr. Rausch says. “But Baby Boomers are more educated in terms of what’s available to them for healthcare. They’re savvier and they know that there are different options. They ask tough questions and push the envelope. I think that’s good for hospice and palliative care.”
In 2021, the American Association of Colleges of Nursing (AACN) released the latest version of its core competencies for professional nursing education. The new core competencies are split into four spheres of care, and one of those spheres is hospice and palliative care. While it will take some time to go into full effect, it means that graduate-level NP preparation programs are now mandated to include content on hospice and palliative care.
“There is truly a fine art to end-of-life care and palliative care,” Dr. Rausch says. “I think that people are starting to see that those who are dying deserve more than just hand-holding and that there is a real science to it. There’s a lot more research that’s shining a light on our field, and that’s exciting to me.”
Hospice and palliative care are challenging in uniquely human ways. NPs who work in this area have to be comfortable having conversations that others find frightening; they have to be both hopeful and rational when others feel dejected and emotional; and they have to make personal connections while also maintaining professional boundaries. But for Dahlin and Dr. Rausch, those challenges are part of what makes the job so rewarding.
“It’s just fascinating,” Dahlin says. “It’s never boring. It’s going deep pretty quickly and having conversations with patients that you may never even have with close friends. At the end of the day, I’m tired because I’ve been deeply emotionally engaged with people. I’m not just doing blood pressure checks or diabetes checks, but it’s incredibly rewarding.”
“I know what my job is and I know that my patients are not going to live forever,” Dr. Rausch says. “But I go in knowing that I have a very special place in their life and I feel blessed to be able to go into people’s homes and to share their life and their stories. It’s very personal. It’s an amazing thing to be involved in.”
Resources for Hospice & Palliative Care NPs
To learn more about the work and advocacy of hospice and palliative care NPs, check out some of the resources below.
- Center to Advance Palliative Care (CAPC): The nation’s leading resource in its field, CAPC is a national organization dedicated to increasing the availability of quality healthcare for people living with a serious illness. They provide healthcare professionals and organizations with the training, tools, and technical assistance necessary to effectively meet this need.
- CSU Shiley Haynes Institute for Palliative Care: The CSU Shiley Haynes Institute for Palliative Care provides online, evidence-based, practice-focused education for healthcare professionals working in palliative and serious illness care. Their APRN Palliative Care certificate course consists of nine months of comprehensive training for NPs working in (or seeking to enter) palliative care. The Institute also offers resources for nursing faculty seeking to integrate palliative care content into undergraduate and graduate-level curriculum.
- Hospice & Palliative Nurses Association (HPNA): Established in 1986, HPNA is the national professional organization that represents the specialty of palliative nursing, which includes hospice and palliative nurses. They support the profession through education programs, research initiatives, and advocacy.
Background information and resources were provided by Jennifer Moore Ballentine, MA, Executive Director of the CSU Shiley Haynes Institute for Palliative Care.
Matt Zbrog is a writer and researcher from Southern California, and he believes a strong society demands a stronger healthcare system. Since early 2018, he’s written extensively about emerging topics in healthcare administration, healthcare research, and healthcare education. Drawing upon interviews with hospital CEOs, nurse practitioners, nursing professors, and advocacy groups, his writing and research are focused on learning from those who know the subject best.