What Is the California State University Institute for Palliative Care?

Jennifer Ballentine is the Executive Director of the California State University Institute for Palliative Care. The Institute primarily teaches healthcare professionals about palliative care and the nuances of the field. The main Institute is hosted by CSU San Marcos, with campus partners at San Marcos, CSU Fresno and CSU Monterey Bay. The Institute is also in active outreach with several other campuses around the state.

Editor’s note: This interview has been edited for length and readability. 

Lucas Morgan: Hello Jennifer! Thank you so much for taking the time to speak with me. What are your educational and professional backgrounds and how did you initially become involved with palliative care?

Jennifer Ballentine: I came into this work as a second journey after a long and successful career as a book production entrepreneur. I can’t remember exactly how it came about, but someone told me it would be interesting to volunteer at a hospice. I did that, got very interested in it, and enrolled in a Master’s program at Regis University.

I was involved in a lot of volunteer committees, coalitions, etc. around the time I was finishing that program. Eventually an opportunity came along that allowed me to become director of programs at the state-wide Colorado Hospice Organization.

Lucas: Can you describe the CSU Institute for Palliative Care and its mission?

Jennifer: It is a state-wide institute of the California State University (CSU) system. It’s partially supported by the CSU system, however, we are responsible for the budget. So our funding comes in part from foundations as well as revenues from course registration fees.

Our courses are all entirely online and are directed towards current healthcare professionals who are looking to get into palliative care or increase their palliative care skills. We enroll individuals who are interested, and we also work with organizations who are interested in using our curriculum and online platform for their own in-house training, on-boarding and up-leveling for their workers. We are a workforce development initiative of the Cal State system. Additionally, we have partners from other CSU campuses who are working to integrate our content into both undergraduate and graduate program curricula so that new workers coming into the workforce will know about palliative care.

The CSU system graduates about 85 percent of the California-state healthcare workforce, which equates to roughly 15 to 20 percent of the national healthcare workforce. It’s an important pipeline into the field.

Lucas: How long have you worked at the CSU Institute for Palliative Care?

Jennifer: A little over a year. I started at the end of September 2017.

Lucas: What exactly is your role at the Institute?

Jennifer: I’m the executive director so it’s comparable to an executive director at a non-profit organization. I’m responsible for setting the direction and managing the team of directors who then manage the staff. I’m heavily involved in fundraising. I’ve got my fingers in every possible pie, as they say.

Lucas: How would you describe palliative care to someone who knows nothing about the practice?

Jennifer: Palliative care is a medical specialty that is focused on improving quality of life, relieving pain symptoms and stress and providing an extra layer of support for patients, their families and their caregivers. It’s available to anyone at any age, at any stage of illness, without having to forego curative treatment. You don’t have to be at end of life, and you don’t have to give up on chemotherapy or radiation or whatever else you’re pursuing. Palliative care really focuses on making sure a patient is comfortable and supported and their symptoms are well managed.

Credit: cheyenneregional.org

Lucas: Who provides palliative care?

Jennifer: It’s provided in a lot of different settings. This is one confusing aspect about palliative care. It can look very different depending on where you are. The most prevalent form of palliative care is provided in the in-patient hospital setting. In this hospital setting, a patient could be in the advanced stages of their illness. The question then arises, “What treatment plan do we pursue at this point to support your goals?”

Then the palliative care team is brought in to help the patient understand what both their medical and personal goals are. The team then works with the patient’s other doctors to create a treatment plan that is going to meet the patient’s goals. You may not think you need an entirely different palliative care team, but you do. It’s an interdisciplinary approach so there’s a physician, nurse, social worker and a chaplain, all of whom bring a different lens to the conversation to really support the individual. This kind of care is very episodic, it happens once and there isn’t a lot of follow up.

Lucas: How about other “forms” of palliative care?

Jennifer: There are different kinds of clinics and hospice organizations that offer out-patient or community-based palliative care. In these cases the patient is seen either at home or in the clinic over time to make sure their goals are being met, their symptoms are controlled and they and their family are being supported. Palliative care in this setting is an ongoing complement to whatever other kind of treatment they are getting.

Lucas: What is the technique known as “motivational interviewing” in the realm of palliative care?

Jennifer: Motivational interviewing is a technique used by people who are trying to help patients do better for themselves. Whether it has to do with diabetes or weight management, coping with a serious illness, etc., motivational interviewing helps activate the patient in taking more responsibility and being more in charge with their own health. It’s a specific technique of questions and answers; it’s kind of a Socratic interview method.

Take the example of weight management. One technique is not going to work for every person who wants to lose or manage their weight. One person may need to be sort of scolded into it, another may need to be encouraged into it and yet another may just need the tools to be able to do it themselves. Motivational interviewing is a way to connect with the patient to determine ways that will be most compelling for them to make whatever changes they need.

Lucas: Can non-health care professionals take courses at the CSU Institute for Palliative Care?

Jennifer: A well-informed lay person could take one of our courses, however the courses are designed for working clinicians. The coursework and materials mostly assume a general healthcare background. We do have a series of courses directed to primary care providers and people not too familiar with palliative care who want to learn a baseline set of skills and concepts. There is a series of courses called, “What Every [Blank] Needs To Know About Palliative Care.”

If a lay person just wanted to know about palliative care, the “What Every Healthcare Professional Needs To Know About Palliative Care” course would be a great entry point just to get a sense of it all.

Lucas: What’s the most popular course offered by the CSU Institute for Palliative Care?

Jennifer: Actually, we recently took a look at that information. Our most popular course by the number of students who have enrolled in it over time is our certificate in chaplaincy. Part of the reason for that is it was one of the first courses the Institute launched back in 2013. There are also not many courses out there that are specific to the chaplain role specifically around palliative care.

Lucas: What role does a chaplain serve when it comes to palliative care?

Jennifer: Chaplains occupy a couple of very important roles in palliative care. They’re there primarily to provide spiritual and what I call existential support to the patient. A person facing a serious illness, particularly one that is leading inexorably to death, faces a lot of assumptions regarding stability and identity, and a lot of issues that kind of “make up” a person’s understanding of the world, themselves and their future. That part of being ill is oftentimes ignored by physicians, nurses and even social workers, who are very focused on other important things. The chaplain is there to help the patient confront questions regarding what this all means for them.

Plus the chaplain offers support for the whole palliative care team because this is hard work. The team is dealing with people who are very ill every day, and they need support as well. What typically happens is a palliative care team in a hospital might comprise only a doctor and a nurse, and they’ll just grab any chaplain to come talk with them. But we want to make sure the chaplain has a firm grounding in palliative care.

Lucas: What are some more popular and/or interesting courses available through the Institute?

Jennifer: Actually our next most popular course is all about aromatherapy and its role in palliative care. When I first joined the Institute I thought to myself, “How do you teach a course about aromatherapy online?” Turns out there’s a kit that you buy that has all the essential oils and things that go along with the didactic material for the course.

We have another popular course called “Healing Through Art.” It’s one of our “Train the Trainers” classes, so the goal is that someone will take the course and then take the program into another setting. It’s popular among professional caregivers as well as patients and families who are trying to cope with an illness and the strain of caregiving through artistic expression.

Lucas: Do students who complete courses at the Institute “graduate?” Are  there programs that culminate in degrees and/or certifications?

Jennifer: We do have hardcore, clinical-skills courses that culminate in Certificates in Palliative Care for advanced practice registered nurses (APRNs), registered nurses (RNs), social workers or chaplains. The curriculum really spans an interesting space. We offer very practical, skills-based courses that are instructor-led courses with a cohort moving through the course at the same time.

We don’t have a stackable certificate culminating in a master’s degree, which some universities offer. We’re really focused on workforce development more than academic preparation. But students do get a slew of continuing-education hours, which many clinical disciplines require for licensure. Many employers will also require their people to get a certain number of continuing education hours over the course of a year.

Students receive a certificate for several of the courses. To be clear, a certificate is different than a “certification.” A certification is conferred by a professional society, usually as a result of an exam. So we tell our certificate students, “This is not a certification, but it will set you up very powerfully to take that exam and pass it.”

Lucas: I see on the Institute’s website that you offer “organizational training.” How does that work?

Jennifer: You’re probably thinking of our “Core Concepts in Palliative Care” courses. These are intended for organizations to send their team through the same training. So a nurse, chaplain, physician and social worker could take the course, either at the same time or different times. It would give them all a foundation to understand the concepts and common language with which to talk about palliative care, as well as discipline-specific skills.

Chaplains serve an important role during palliative care.
Credit: medscape.com

Lucas: Is the Institute involved with awareness and/or public outreach regarding palliative care?

Jennifer: Our campus partners do a lot of work related to that. Many of them undertake outreach projects into their communities. They may sponsor “health fairs” that have advance care planning as the focus, or they’re developing training programs for family caregivers or going out and talking to high school students.

Our campus partner in San Marcos has a real focus on young caregivers. We’ve done surveys at different CSU campuses that found that something around 40 percent of our student population are caregiving for a relative in addition to their academic responsibilities. So it’s not just an older person problem, not just Baby Boomers who are caregivers. Campus partners have developed programs for high school students who are caregivers, as well as palliative care programs for health workers in Latino communities.

Lucas: How important are a patient’s family and loved ones in palliative care?

Jennifer: Palliative care is very focused on patients and families. Whether it’s in a hospital or in the home setting, the family is involved as much as the patient is. A large reason why palliative care teams are called upon is because there’s conflict within the family, conflict between what the patient wants and what the family wants. We want to try and get everybody on the same page. So paying attention to the family is fully integrated into all of our courses.

Lucas: Does palliative care change at all when practiced on children with serious illness?

Jennifer: It does a little bit. Palliative care has actually been available for children and adolescents longer than it has been for adults. It changes mainly because the patient is less in charge of the decision making. But that doesn’t mean that the patient is ignored. One of the poignant and common features of dealing with a child who’s seriously ill is that the parents are protecting the child, and vice versa. The parent doesn’t want the nurse to tell their child he or she is dying; the child doesn’t want the nurse to tell the parents he or she is dying. The palliative care team opens up the lines of communication to get people on the same page. And of course children are not just “little adults.” So there are differences physiologically, medically and psychosocially.

Lucas: Why do you think palliative care is so important?

Jennifer: Being sick is hard. Anything that can be done to soothe the experience, to relieve the suffering, should be done. However, there is a certain amount of suffering that honestly can’t be soothed. It’s hard to be sick; it’s hard to die. There will be suffering and grief attached to it all for both the patient and their loved ones. You can’t take it all away. But there’s certainly a lot you can take away.

A lot of pain is created by the medical interventions that are supposed to make you better. This is known as “iatrogenic harm.” It’s the harm that comes about as a result of someone trying to do something good for you. The simplest example is the pain of an injection or the achy arm the day after a flu shot. The balance between the pain you’re willing to put up with and the bigger benefits changes as you become seriously ill.

There can come a point where the pain and suffering induced by medical intervention outweigh the benefits a patient will receive. It’s at that point where palliative care is critically important for someone to interrupt that balance. We’ve actually discovered that when palliative care is involved early (ideally from the day of diagnosis), along with curative treatments, many people will live longer, and definitely will live better. Sometimes not much longer, but it’s all about how people feel.

Lucas: Do you have any tips or words of advice for anyone dealing with serious illness, their families and the role of palliative care?

Jennifer: The minute you are diagnosed with a serious illness, say to your doctor, “I would like to know more about palliative care and how that will help me cope with this.” Sometimes a doctor may not know what palliative care is. Another way to say it is, “Along with whatever you’re doing to cure me, I want to know my symptoms are looked after and my family is being supported and that my quality of life is a goal.” You need to make sure your doctor is paying attention to you as a person. Also, there’s a perception that palliative care is synonymous with foregoing curative treatments, and that receiving palliative care means you’ve “given up.” It’s supposed to be both/and: curative and palliative care should happen in tandem with each other.

Advance directives are also very important for really anyone over the age of 18. Run through scenarios with family members, make sure that you have a medical power of attorney to speak for you if you can’t. The main thing is to talk about it with your family members. You can’t assume they know what you want, because they probably don’t.

Lucas: Thank you so much Jennifer for taking the time to speak with me! I’ve learned so much from our conversation.

Jennifer: Thank you Lucas!