A Passion for Palliative Care

Nov 01, 2019

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The barriers to access to palliative care are still there, no question. But things have definitely gotten better.

Clareen Wiencek

November is National Hospice and Palliative Care Month. So who better to talk to about palliative care than Clareen Wiencek, associate professor at the University of Virginia, in Charlottesville, where she directs the master’s and doctor of nursing practice programs. A passionate advocate for teaching palliative care to nursing students, Wiencek — who previously served as AACN president — has nearly 40 years’ experience as a bedside nurse in critical care, nurse manager, educator and researcher, and was nurse manager in the acute care-based palliative care unit and program director for the Center for Integrative Pain Management at Virginia Commonwealth University Health System in Richmond.

Can you talk a little bit about the difference between palliative care and hospice care?

It’s a common confusion. Palliative care is for anybody who is living with a serious illness or a chronic illness. It is goal-centered care. It’s focused on pain and symptom management by a multidisciplinary team. It can be offered at any point during any serious diagnosis, at any age. Someone receiving palliative care doesn’t have to be terminal. They could be getting palliative care for years. Hospice is palliative care. It’s all those good things I just mentioned — goal-directed care, effective pain and symptom management — but it is palliative care for those people who are in the terminal phase of their disease.

When our hospice benefit was written in the 1980s by our federal government, they put six months on the definition of someone who’s in a terminal phase. I think what nurses and physicians need to understand is that it’s a continuum and that palliative care and curative care can really be offered simultaneously, when someone’s dealing with a chronic or serious illness. If, at some point, they do become terminal, then hospice could be offered to them.

What barriers exist to increasing access to palliative care?

The barriers to access to palliative care are still there, no question. But things have definitely gotten better. We know that 95% of academic medical centers have some type of palliative care team. We know there are regions in the United States where the general population is underserved in palliative care, and there are definitely populations that are underserved. But the explosive growth we’ve seen over the last 20 years gives me hope that we’re going to continue to see the use of palliative care.

I think there actually are two major barriers that I see in my practice. One is our innate American belief in technology — it’s the technological imperative. If the technology is there, you use it — whether it’s ICUs, ventilators or ECMO. As we continue to increase the sophistication of our technology, I think it only reinforces the view of clinicians and consumers alike: There’s always got to be some technology that’s going to save a patient, even if they have a very severe life-threatening injury or illness. So I think the technological imperative is a barrier.

The second barrier I see is education, knowledge and awareness. Even though there is this explosive growth of palliative care in the last 20 years that has helped the penetration of palliative care into community hospitals and academic medical centers, there is still the pervasive myth that it is only about end-of-life care. That it’s not about good symptom management and goal-directed care and focusing on the person and what their preferences are throughout the continuum of serious illness.

If you were talking to a group of critical care nurses entering their second year in critical care, what would you want them to know about palliative care?

I do a lot of teaching with acute and critical care nurses and nurses in other clinical areas. I have a couple of take-home points. I say it’s just one word: simultaneous. If they remember nothing else about palliative care, remember that it can be offered simultaneously with curative and lifesaving treatments. People do not have to wait. They do not have to choose between palliative care and lifesaving treatments such as hemodialysis, surgery, chemotherapy or a trial of ICU care. They can have that at the same time they’re having palliative care. It’s not a binary choice. You don’t have to have a patient go through an entire acute or ICU stay and then think maybe palliative care can help.

What question do nurses ask about palliative care, and how do you answer it?

Probably the most common question is how to bring palliative care in sooner. Nurses ask for strategies they can use to approach a physician, a surgeon, an intensivist or an oncologist with the suggestion that palliative care could help. I think one strategy is recognizing that there is both primary and specialist palliative care. And that really all nurses and physicians in acute and critical care settings should be providing primary palliative care. But the most common question is, “How do we get palliative care in here when the primary team is resistant?” I encourage them to recognize that they are already doing a lot of palliative care, even without a specialist consult, and that it is the right approach to take.

If you look back over the last year at what’s changed in palliative care, what in particular stands out or surprised you?

One of the surprises is that I continue to be so impressed and humbled by individual nurses and, to be honest, physicians too, and some providers and advanced practice nurses who are having goals-of-care conversations to really elicit the patient’s preferences, to adjust the plan of care according to those treatment preferences. And while there may not be surprises in an aha! type of way, they impress me with how hard, how diligent they are with trying to understand what’s important to the patient. A change I’ve seen over these last few years is not only the frequency with which I see the nurses and the provider team really try to understand that, but their commitment. It’s their investment in really trying to understand that.

What’s the biggest change in technology that you’ve seen in healthcare, and how has it meshed with your career? How has it influenced your career?

I’m going to define technology a bit broader. I actually think it’s the education and critical thinking of the nursing workforce that is the greatest change. It matters greatly that nurses are the interface between the technology and the human centeredness of what we do every day. I was always a medical ICU person, will always be a medical ICU person, but I’m also now a palliative care nurse practitioner. And, it still comes back to that human touch. How in such a technologically focused environment, it is that nurse who is there 24/7 who makes the difference for the patient and the family.

What challenges or trials are on the horizon for critical care nursing? What do you envision over the next 10 to 50 years?

I’m going to start with challenges first. I think it’s going to be the change in the United States in our healthcare systems. Since the majority of our constituents work in hospitals, I think looking forward 50 years, it’s a bit hard for me to envision what it’s going to really look like in our country in terms of hospital systems and the structure of those.

Experts in healthcare policy predict that in the next 20 to 30 years our healthcare system is going to be made up of about six to eight major healthcare systems. So I can almost divide the United States into six regions and envision that you’re going to have one healthcare system in those different regions. So I think the challenge is going to be how critical care nursing — and all of nursing — adapts to the economic, financial and policy forces that are going to drive that restructuring.

The positive thing is that the future looks very bright for nursing. The growth that I’ve seen in my career of over 40 years makes me incredibly proud that nurses continue to use their voice. They’re at the table because it matters. They are getting advanced degrees. They are responding to the Institute of Medicine [now National Academy of Medicine] report, “The Future of Nursing.” We are there. I see the power of nursing, and I love AACN’s theme — Unstoppable — because I think going forward for 10 or 20 and into 50 years, that we, in that time period, are going to benefit from the work of many giants in nursing — and from all nurses who show up every day to do the hard work of nursing and advocating for patients.

I don’t think we’re going back to a time when nurses weren’t heard. And I think as the structure of our healthcare system changes, nurses are going to be there to make sure their voice is heard. We offer that critical perspective for why hospitals even exist. I think the day when we were silent is gone.