Palliative care is arguably one of the newest and least understood medical specialties. Often described as the management of pain, symptoms and overall quality of life for patients with serious illnesses, palliative medicine is regularly confused with hospice and end-of-life care.
There is some overlap, says Judith A. Paice, PhD, RN, FAAN, faculty member of the American Association of Colleges of Nursing’s End-of-Life-Care Project. But the main distinction is the latter two specialties are relegated to a person’s final few months whereas palliative care is most effective when it’s introduced right after a patient’s diagnosis. More medical centers are recognizing the value palliative care brings; in 2000, less than one-quarter of U.S. hospitals had a palliative care team compared to more than three-quarters in 2016, according to the Center to Advance Palliative Care.
To unpack this holistic approach to treating serious illnesses for fellow healthcare professionals, Dr. Paice, director of the Cancer Pain Program at Northwestern University’s Feinberg School of Medicine, sat down with Florence Health and shared what it’s really like to be a palliative care nurse.
Florence Health: What drew you to working in palliative care?
Dr. Paice: I’d been working in oncology my whole career, and we’ve done a tremendous job in the science of oncology, but people continue to experience symptoms and emotional concerns related to having a serious illness. That attracted me to palliative care, focusing on how we can better meet a patient’s needs and honor their wishes.
What are the biggest misconceptions surrounding palliative care?
Because it’s relatively new, palliative care is still not well-understood by the public or professionals, and there’s considerable misunderstanding that it’s only for the dying. The goal is to improve the quality of life of patients and their families facing any problem associated with life-threatening illness. Palliative care prevents and addresses symptoms and the psychological and spiritual components of a person’s life. We want people to understand that integrating palliative care from the beginning of a serious diagnosis is actually a much more effective strategy to meet the patient’s needs.
Many clinicians also think only palliative care teams should provide those services, but we all can. Every primary-care doctor knows how to manage hypertension. All clinicians should know the basics, and then when there’s a more complex case of symptom management, goal-setting or patient-family relationships, you call the specialty team.
How would you distinguish palliative care from hospice care?
Hospice care is provided through Medicare hospice benefits, and it started as a service provided to individuals in the home primarily. Hospice, like palliative care, is optimally a team approach that addresses symptoms and goals of care for the patient, but it’s restricted to the last six months of the individual’s life, if nature were to take its natural course.
The most robust palliative care programs offer outpatient clinics, as well. After a study in the New England Journal of Medicine revealed lung cancer patients had a much better quality of life if palliative care was introduced near the time of diagnosis, more institutions feel it’s evidence-based to work with folks before that distressing period where the patient feels unsure about their options.
What are the most important clinical skills for palliative care?
First and foremost, you need to have stellar communication skills, especially listening, and to conduct comprehensive assessments. You can’t do a good assessment even of simple symptoms without communication skills. You should understand the management of symptoms — physical, psychological, existential and spiritual distress — and the primary strategies to treat them.
You also need to work with teams. In most cases, we’re not the primary team, so we need to inform the others. We tend to silo patients. The kidney doctor says the renal system is okay, the pulmonary doctor says the lungs are good, the oncologist says the tumor is responding, but then why does the patient feel so awful? That’s where palliative care comes in, reframes and educates.
What advice would you give clinicians considering palliative care as a specialty?
Learn more about palliative care through reading or taking a course. If you have a palliative care team at your institution or nearby, shadow them. And last, reflect on your motivation to move into palliative care. Think about if moving into palliative care meets those needs. For example, if you’ve experienced a loss recently and are grieving, then it’s probably not the right time to start working with people at the end of life. Give yourself time to heal and then reconsider.
What’s the best part of working in palliative care?
It’s extraordinarily gratifying to walk this path with patients and their family members. They open their arms to you at one of the most vulnerable times in their life. To know that we can assist them and improve their quality of life provides such meaning as clinicians.
About 99 percent of the job is positive. It isn’t all gloom and doom, sadness and tears. There can be enormous growth, caring, love and connection at a really complicated time.
What’s the hardest part?
The other piece we all have to attend to, regardless of where one works but particularly in palliative care, is our own self-care. It’s exhausting to be totally present at the bedside for someone facing a life-threatening illness, to see the anguish and distress they and their family members are experiencing.
Self-care, self-awareness and attention to your own needs is crucial. If you’re starting to feel some compassion fatigue, do that introspection and identify what’s causing that. Establish self-care practices. If you’re dealing with burnout, you can’t help anyone and will only hurt yourself.
Do palliative care providers experience burnout more frequently?
My personal impression is we experience it less. Because we have the skills to address symptoms and patients’ goals of care, we know our work isn’t futile. What we’re doing for the patient is extraordinarily meaningful.
Nursing becomes a huge burden when you’re at the bedside with a patient who’s intubated, unable to speak with their loved ones, and maybe you know it’s not what the patient desired. Compassion fatigue escalates when the care you provide doesn’t align with what the patient wants.
What’s the most important part of providing palliative care?
First and foremost, we’re helping the patient articulate what they want — and many people have never been asked. Their response is, “What? I have a choice? I don’t have to be on a ventilator? I don’t have to do a tenth line of chemotherapy?” It’s better to initiate those conversations before a crisis, when they’re not in the emergency room unable to breathe.
That’s why palliative care is so meaningful. You’re addressing the disconnect going on in our healthcare system.
Palliative Care Continues Its Annual Growth Trend, According to Latest Center to Advance Palliative Care Analysis, Center to Advance Palliative Care.
Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer, New England Journal of Medicine.
Last updated 9/23/2019