“To me, to talk about suffering is joyful. Yes, the world is full of suffering. People have said that, but the world is also full of nurses relieving suffering. We had this pandemic, and yet nurses were there, they showed up… What do I do as a nurse? I show up for every nurse who had the courage to get out of bed and come back to work the next day. Wow, what a victory, what a thing to celebrate.”
Keynote Day 1: BETTY R. FERRELL, PhD, MA, CHPN, FAAN, FPCN
Director and Professor, Nursing Research & Education
City of Hope National Medical Center
“The Enduring Legacy of Nursing’s Compassionate Presence in Serious Illness”.
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Q:
The theme for this conference is “It’s Complicated: Responding Ethically from the Beginning to the End of Life.” What does it mean to respond ethically? How does this theme resonate with your current research or practice?
This is a very different time, and I’ve been a nurse for 45 years. I can think of so many times where we’ve said, “Oh, this is really different,” just when we think it couldn’t get more stressful. I’ve lived through a lot of things, like 911, but living through the pandemic is very different. We are at a very different place in terms of nursing and the ethical nature of our work. One of the things that strikes me is that in so many things that we’ve dealt with – the first cases of AIDS and seeing the tragedy of that epidemic unfold – a key difference with the pandemic for me is that suddenly, we the health care workers were as vulnerable as anyone. And so having this personal threat and seeing our coworkers become ill and feeling that we were at such risk and then exposing our families to risk, that just exposed the layers of dynamics that we had not seen before. So thinking about end-of-life care and the ongoing work of serious illness care…absolutely, it’s a complicated time.
We as people, as human beings first, are changed, because of the last few years. But as professionals, we are also changed; we’ve experienced vulnerability. We’ve gone from a nurse one day to a patient, a child, a parent the next. It opened us up in really different ways. My work is in the area of palliative care. Serious illness care and end-of-life care are very much a part of what we’ve just been through. It’s the concept of suffering. In 2008, I, along with my colleague Nessa Coyle, published our first book on the nature of suffering. We published that in 2008, because there has been a lot written over the years about suffering from the medical perspective, like the seminal work of Eric Cassell on The Nature of Suffering and the Goals of Medicine. But I wanted to say, wait a minute. Nurses are also at the frontlines of responding to suffering. And so we did work and then published our book, The Nature of Suffering and the Goals of Nursing. A year or so ago, a colleague, Billy Rosa – a newer nurse to the field, a brilliant scholar, and an ethicist at Memorial Sloan Kettering – really encouraged me to work on a new edition of that book. He said it’s time. He recently completed a masters in ethics and PhD at Penn. So we decided to do the book together.
In the first edition, I wrote most of it. But this time, we thought it’s really time to bring in a lot of voices. We really wanted to make sure that we were talking about suffering across the lifespan. So we invited several authors to join us, from perinatal, neonatal care all the way through geriatrics. The way the book is organized now is that each chapter addresses a different aspect of life, from perinatal all the way through geriatric care. Then Billy and I took all of that work, synthesized it, and thought, how would we revise the basic tenets with how we ended the first book? What I’m sharing at the conference is largely derived from the book, which will be released in August. It’s just a great time to write a book about suffering in the middle of a pandemic. All you have to do is look out the window, turn on the news and it’s right there. To have the book come out now, at this time…we’re clearly still dealing with issues of the pandemic. But I think we are also moving to a new place. Now is the time for reflection. Now is the time to ask, what have we learned? What do we need to do to learn from this before we move forward? That’s what I’m doing in my presentation. I’ve gone back through the whole book and extracted important themes across the chapters to share. I reflect on, what is the nature of suffering? What are the goals?
– Betty R. Ferrell
Q:
The last few years we have witnessed a disintegration in civil discourse especially with polarizing topics. Nurses can be caught in these dialogues, both with patients and their families, in their communities, as well as when they are sorting through their own values and determining how they honor them while addressing them as a professional. What are your thoughts on this, and can you give one piece of advice to address these challenges in these turbulent times? What is your perception of the current nursing ethical landscape?
I’m an eternal optimist with a disclaimer or label on my forehead. I always have hope for the future. I always think that whatever we’ve been through, ultimately, will strengthen us. So many horrible things happened in the pandemic, and it was undoubtedly so morally distressing on so many levels. But we also learned a lot, and it exposed a lot. My colleague, Billy [Rosa] is extremely involved in issues of equity and disparities and has written a lot of beautiful work about how, in the midst of the pandemic, we became so painfully aware of the inequity in the healthcare system. Those of us who still have a warm home and food on the table and the ability to educate our children, we have such a different experience than people who do not have all those advantages. As painful as that it, the fact that we’ve brought attention to and exposed inequities, to me is a positive thing. While we were going through the pandemic, it wasn’t the only thing happening in society, right? There was the pandemic and at the same time George Floyd and racial bias and issues related to women’s health and immigration. Society moves, goes on, in the midst of a pandemic.
Now we’re at this interesting place, today in 2023, where we look around and say, wow, there’s all this interest in diversity, equity and inclusion. Billy and I talked about how there’s great nursing literature now about how central nursing is to the issues of equity, right? Nurses are the predominant profession; the bedside nurses are the advocates for respectful care. Yes, I’m thrilled and I am waving that flag. Absolutely, we need to be attending to diversity and equity and inclusion. But what I’ll also say is, that’s always been our choice as nurses. In May, I will celebrate my 45th year as a nurse, and I can promise you that the day I signed on to this profession in 1977, I signed on to respectful care. I signed on to advocacy. I signed on to speak about injustice. So is this a new call? A reminder: nurses always have been committed to issues of just and respectful care. Now, because we have all been through this really difficult time, we are reminded once again why the nurse’s voice must be a part of this conversation. This is in our DNA, right? You can turn in your license if you’re not ready to stand up every day of your practice and speak about injustice.
– Betty R. Ferrell
Q:
Do you have advice, given the turnover, for the population of newer nurses on how to navigate what it means to be a nurse?
Honestly, we need to love and hold and embrace and support our new nurses. Because I still remember vividly what it’s like to be a nurse. Seriously, if you just show up and take care of your patients, that’s great, like a big celebration at the end of every day. It is so hard to be a new nurse. You’re still figuring out how to do the technical skills, you’re growing as a person; it’s enormous. For the new graduates in our field, I would say, take good care of patients and take good care of yourself, and the rest will come. Once you feel competent in managing central lines, giving complex medications, doing procedures and getting really critically ill patients out of the hospital and sent home…you’ve sort of mastered the technical aspects. Then it is incumbent on you to begin to go deeper. Now that I’ve been endorsed, and I’ve cared for 400 underserved women on the maternity ward or now that I’ve been a new graduate and I’ve been working in the inner city hospital serving complex, chronic illnesses or now that I’ve been in a clinic and I’ve given chemotherapy to 700 people… Now that I’ve done the physical tasks of nursing, what have I learned? Because if you’re a new graduate, if you’ve been a nurse for a year, you have such wisdom. So much, because you sat there and started those IVs, sat there and helped make space, changed the patient, looked at the pressure ulcer, did mouth care.
There’s a lot of great ethics literature in nursing about being a witness, bearing witness. And in our work on suffering, a number of wonderful nurse authors who have talked about responding to suffering say that it means bearing witness. It means we are there. We are there the moment that woman wakes up having just lost her breast from a mastectomy. We are there on that surgery ward when the patient rolls back from having just had his leg amputated. We are front row to suffering, right? It’s your job as a nurse to witness suffering. That’s your job. That’s what you do, even as a 22-year-old new graduate from that year of bedside care. Now you need to speak up and use your voice. Talk to the media, talk to your legislator, talk to administrators and say, we are now being asked to send women home six hours after a mastectomy. Let me tell you what these women are saying to me. Like the god mothers and fathers of nursing say, nursing is about speaking for the people who can’t speak for themselves, whether they can’t speak because they don’t speak English, whether they can’t speak because they just got in the country last week, whether they can’t speak because they are too sick or too young or too old. We are the voice of the vulnerable. That’s, again, in the DNA. It’s in the job description. You signed on to do the work, right?
– Betty R. Ferrell
Q:
Can you tell us where you are finding joy in life, despite the challenges around us?
To me, to talk about suffering is joyful. Yes, the world is full of suffering. People have said that, but the world is also full of nurses relieving suffering. We had this pandemic, and yet nurses were there, they showed up. We talk about that a lot, too. What do I do as a nurse? I show up for every nurse who had the courage to get out of bed and come back to work the next day. Wow, what a victory, what a thing to celebrate. So I’m joyful. I’ve always said, with 100% sincerity, that I wake up every day of my life thrilled to be a nurse. Kind of jokingly, but not really, I feel sorry for all the people around who aren’t nurses. I’m really sorry they don’t have the experience, lots of meaningful work in the world. We are so fortunate to do this work. So I’m optimistic. I’m optimistic that from this really difficult time, progress will happen.
I think our nurses are exhausted and overwhelmed. They need so much support. I’m the first to agree to that. But I also think, from this, we will grow and we will do better. Yes, it’s really messy right now to deal with all of these issues of inequity and injustice. It’s messy to look at all the huge gaps and problems of our healthcare system. But you know what would be worse is to not talk about it. What would be worse is to ignore the messiness we live in. So lay it out there. I’m thrilled, because when I started nursing, we didn’t talk about all these things. I started nursing where we didn’t say, maybe our African American patients aren’t getting such good care. So we’re talking about it. And I think we’re at this place, because we now have the courage to talk about where the huge problems are. I also think we have the ability to improve.
For new nurses or people starting their career this year in the messiness, I would say, you still made the right decision. You still chose the right career. You have a lifetime of joy and privilege to look forward to. You are so lucky.