The following is an edited transcript of an MDAdvantage podcast with Steve Adubato, PhD, and Elizabeth Bertolini, MMH, RN, HEC-C, that was recorded on February 4, 2021. Ms. Bertolini is a hospice and palliative care nurse, a clinical care ethicist and Co-Chair of the Bioethics Committee at Morristown Medical Center. She spoke to us about the role of healthcare ethics consultants and palliative care providers, and their recent experiences caring for patients during the COVID-19 pandemic.
ADUBATO: What is the role of a healthcare ethics consultant?
BERTOLINI: A healthcare ethics consultant is a person who has received education and training in communication, the principals of bioethics and medical narrative. This person then utilizes that education and skills to help patients and families navigate complex medical decisions and to help guide healthcare professionals who are considering the right thing to do in any given situation. We also help develop protocol to support our healthcare team in ethical practices. At Morristown Medical Center, we have a wonderful multi-disciplinary bioethics committee, of which I am the co-chair, that meets monthly with community members as well as members of our healthcare team. We discuss current topics in bioethics, review challenging cases and collaborate to find the best way forward.
ADUBATO: How would you describe the difference between hospice care and palliative care?
BERTOLINI: Palliative care is a specialty of medicine. Physicians undertake a fellowship training to become board certified as palliative care physicians, and nurses can study to take a certification exam or just choose to do it because it is their particular calling in nursing. Palliative care emphasizes a whole person approach for patients who have chronic or acute-on-chronic conditions, or life-limiting illnesses that cause them to have symptom burdens that affect their quality of life. Palliative care physicians, nurses, social workers and chaplains approach care focusing on physiologic symptoms, psychosocial symptoms and spiritual distress. Palliative care patients can continue to undergo treatments such as chemotherapy, radiation therapy or aggressive therapies to treat their disease, but the focus for palliative care is to make sure that we are managing symptoms like pain or shortness of breath to allow them to live their best life.
Hospice is a subset of palliative care, and it is essentially utilizing an insurance benefit when a physician determines that a patient has about six months to live. Hospice is appropriate when it is clear that treatment is no longer effective in prolonging life. The goal is to make that life the best that it can be for however many days, weeks or months that person has left.
ADUBATO: What are the primary issues that you help people deal with as a family member approaches the end of life?
BERTOLINI: In the United States, we are a little bit of a death-denying society. We sometimes worry that if we mention the fact that a loved one has a life-limiting or terminal illness, we will somehow hasten their death, or it would be harmful to them for us to even acknowledge that. That delay in acknowledging the fact that most diseases have a beginning stage, a middle stage and an end stage doesn’t allow the physician to say, “You are getting to the end stage of your illness; let us put in place the supports that will allow you to live the best that you can for as long as you can.”
Hospice isn’t doing anything to hasten end of life. It’s really there as a supportive service, to help that person, to help us as caregivers understand what matters most and to help that person and their family have as many good days as possible for as long as possible.
ADUBATO: How does your job enable you to serve as an advocate for not only families but also for physicians and other healthcare providers?
BERTOLINI: Doctors can be very focused on diagnosis and treatment or on the steps that need to be taken with a patient who has come in with an emergency surgical need. Take, for example, a patient who comes through a surgery well, but the hospitalization is a tipping point in other disease processes for that person. In the clinical ethics role, I’m helpful in challenging the physicians to look at the patient through a more humanistic lens to think through whether the treatment plan they are establishing is individualized and realistic and fits into the narrative of that person’s life. Sometimes, that means asking the physician to consider either discussing with the patient or the family the realistic prognosis, what life might look like for that person going forward, and then creating the space for that person and family to think through what they really want out of their life going forward. Sometimes, my role is to talk with a physician, before the physician’s meeting with the family or patient, about the language to use or how to frame a conversation, or to help the physician consider what they are hoping to communicate and what answers they’re looking for in that interaction.
ADUBATO: Bioethics is a topic that has come to the forefront over the past year due to the COVID-19 pandemic. What are some of the ethical challenges that you have seen in your job as a result of the pandemic?
“I think one of the biggest challenges for all of us is the uncertainty.”
BERTOLINI: I think we would need a really long time to address all of the ethical challenges that COVID-19 has presented to healthcare providers to navigate from day one. That said, I think one of the biggest challenges for all of us is the uncertainty. We’re not comfortable being in a luminal space, and that’s what we were thrown into from the beginning of the pandemic. We’re feeling more comfortable now, as treatment protocols have been developed, and as we understand this disease process more, but at the beginning, there were concerns surrounding situations that bioethicists have considered for many years. For example, each state was trying to quickly develop protocols to decide who would get a ventilator if we are running out of them.
There is fantastic leadership at the hospital system where I work. Our Director of Bioethics and Palliative Care convened a committee, and we worked diligently together to ensure that we would be prepared and knowledgeable about what was being done at the state level in determining which protocol would be actually used. Then we set up triage teams and had dry runs. Fortunately, we never came to the level where we needed to put those plans into action.
Subsequently, we have addressed concerns such as figuring out the most equitable way to distribute monoclonal antibody infusions once they became available and how to prioritize vaccine administration.
I am a boots-on-the-ground clinician. I meet with patients and families who have concerns and questions. There is so much misinformation in the media. There are people who don’t believe that COVID-19 is real; there are people who read about treatment options and want them for their loved ones when it’s really not appropriate. And then there is the difficulty of talking with the families of patients of a certain age with comorbidities who are not doing well despite having all therapeutic opportunities to improve. We must navigate with them the challenge of accepting that this will be a life-ending illness.
And finally, at the top of the list of challenges for healthcare staff is having patients who are isolated and cannot have loved ones at their side. This is particularly difficult when those patients are dying, and the staff must step in and be that presence at the bedside. That has been really challenging.
ADUBATO: Burnout among healthcare providers is a huge issue and concern. How serious do you see the problem of burnout, and what has been your personal approach to avoiding burnout during this very difficult year?
BERTOLINI: It is going to take a long time for physicians and other healthcare providers to really assess the depth of anxiety, stress, fear and challenges that they have been through. I think it is going to be similar to going through a war and doing the best that we can with what we have in that moment, but then later reflecting on how it has affected us professionally and personally. The support of leadership is so important. I, myself, was in that role debriefing on units with staff and giving space for people to share stories.
“I don’t believe that we have compassion fatigue. I think we have an endless well of compassion.”
Personally, I have two thoughts about how I have gotten through. First, as I’ve told the people I work with, each of us can hike a long time if we’re carrying only our own backpack. But we can’t go far if we’re carrying the backpacks of others. So we have to make sure that we don’t overload our own backpack, and that we empower others to have the strength to carry their own. That is understanding, ultimately, the difference between empathy and compassion. I don’t believe that we have compassion fatigue. I think we have an endless well of compassion. Compassion means we’re really just caring for other people. We see them as humans. We care about them. But empathy means we are feeling the story of the other person as our own—and that can become too heavy a burden.
I can have deep sympathy for someone who has experienced loss. But if I start letting that person’s loss bring to mind my own loss, and I don’t separate the two, it becomes very heavy. If I can say, I can imagine how you feel, and I have great compassion for you, and I’m here on this journey with you, that separates your loss from mine. That is the second strategy I have used to get through. I have had the privilege of witnessing beautiful stories of people’s lives as families share them as they’re saying good-bye, and that can get really heavy. On the other hand, I’m so thankful to have witnessed that beauty and to know that our mortality makes today precious. I’m reminded of that every day. So that’s how I get through. But I’ll be honest—it’s not always easy.