Few healthcare topics are more personal and impactful than advance care planning, which ensures a shared understanding of patients’ wishes for end-of-life care.
According to a 2018 national survey by The Conversation Project, a nonprofit initiative that promotes end-of-life planning, 92% of Americans say it’s important to discuss their wishes for end-of-life care, but only 32% have had such a conversation. As a result, critical care nurses — who work with life-and-death situations — may be required to make decisions for their patients without knowing their wishes.
National Healthcare Decisions Day, April 16, is intended to bring awareness about advance care planning, which benefits patients and their families — and healthcare providers.
Critical care nurses Danielle Moody and Bethany Gleason discuss end-of-life care and why these conversations are so vital.
As critical care nurses, what are the challenges of navigating end-of-life care with patients and their families?
Bethany: I feel like I’ve had some ethical dilemmas with providing advance care. It’s not by my choice; it’s because families don’t accept the fact that their loved one has something that’s terminal, and they want me to keep them alive as long as possible.
In a situation where it’s life or death, death is going to happen, no matter what. Yes, I can do CPR, but with a 91-year-old patient, for example, there is a less than 1% chance of survival, and there’s almost zero chance they’re going to be any way functional. They’ll never be back to where they were prior to that event. And I think that people just don’t or can’t comprehend that.
Danielle: I also feel like we need to be able to support families when they are making those decisions for patients. We need to be able to give them more opportunities for closure and more opportunities for realizing that they are part of the matrix — part of the team. I think a lot of times we tend to exclude families, without really meaning to, and there’s this element of distrust already. It’s hard for the family members to really wrap their heads around the fact that they’re losing their family member — if not today, maybe someday soon.
They may also have family members at home who don’t understand what’s going on and are pressuring them to ask us hard questions. Then on top of that, they feel torn because they’ve got healthcare providers who are pointing them in a certain direction that may feel wrong to them.
What can families do to better prepare?
Bethany: The first time they’re hearing about decision-making in end-of-life care shouldn’t be with me in the ICU. One of my passions is to encourage more people to have frank conversations about what they want and what they don’t want for end-of-life care.
What are the dangers of not knowing what patients want?
Bethany: If patients don’t have the hard conversation with their family, then that’s when people can kind of torture you to death, in my opinion, because their family couldn’t let go. They’re not doing it for the patient; they’re doing it because you don’t want to lose the loved one. I think that one of the most profound things that you can do for somebody is to let them go, if it’s their time.
I just had this experience with my grandfather, and he lived a wonderful life. Was it sad that he died? Absolutely, it was very sad that he died, but it gave me peace that I could allow him to die with dignity, and that he wasn’t tortured and nobody did CPR on him inappropriately. People should also realize that living wills are not the end-all be-all, and the family can overturn a living will very easily. That’s why it’s very important for patients to have conversations with their families.
Danielle: That’s right. I think our patients and their family members don’t really have the level of healthcare literacy that we provide for them. I feel a lot of times we speak the medical speak even as nurses. But as nurses, we still don’t necessarily take the time — because we usually don’t have it — to root out our patients’ individual needs. It’s very hard when you’re in a critical care situation, where your patient is really, really sick, and you’re trying to help family members make the right decisions. Usually it’s a decision of life or death, and the default is life.
What can nurses do in these situations?
Danielle: I think there needs to be an impartial body there — someone with healthcare knowledge, maybe with some spiritual guidance, but I don’t feel like we have that in the hospitals. There are chaplains, but they’re not really healthcare trained.
Bethany: I think a lot of it is how providers present the information. I think that the way in which providers present the information can be taken better than other ways.
What about palliative care?
Danielle: Well, I think palliative care is definitely the team that would help with this and have these conversations. However, I often think palliative care teams are brought in too late, or patients and families confuse palliative care with hospice.
Bethany: I would agree that it’s definitely challenging to find the right approach and deal with everything in an appropriate way. Everyone wants to make sure that families are respected and can come to a good conclusion for the patient. It’s also important to be able to come to a conclusion that they themselves can live with.
How can we help patients and families understand the importance of advance care planning?
Danielle: When I think of our big moments in life, I think of getting married, having children, retiring and yes, dying. We plan for almost all of life’s big experiences; why not death?
The first and most important question when planning end-of-life care is: What matters most? This will help [patients and families] answer some very important questions. For example, what is the most ideal death? Does the patient want loved ones around, or would they prefer to be alone? Medical experts can tell them what could be done, but only the patient and family have the answer for what should be done. For instance, is the patient more likely to want to live at all costs? Would the answer change depending on the circumstances? Who can speak to the patient’s wishes? After they answer these questions, they will be ready to develop a formal advance directive.
Bethany: An end-of-life discussion is a difficult topic but one that is very important to have. One program that can help start the conversation is Five Wishes. It covers five topics that are important for families to know. I like the idea of each family member having a booklet and everyone filling it out together. In most states, you can just have someone witness it, and it becomes a legal document.
What do you do to unwind from work and stay balanced?
Bethany: I’m very lucky to have a husband who is a nurse and understands what I do every day. On the hard days when I want to talk about what happened, he will listen. I also have a number of close friends who are critical care nurses that I know I can call any time of the day to talk. I also like to listen to audiobooks (nonmedical) on my way home to allow me to switch my brain off.
Danielle: I enjoy watching old movies with my husband, cooking and entertaining with friends, and reading. My favorite books are biographies and memoirs.
Do you have any hobbies or activities you like to do for fun?
Danielle: My favorite activity is informally teaching and mentoring nursing students, chapter members and colleagues. It keeps me humble and ensures I am continually learning.
Bethany: My hobby is crafting, especially with my Cricut. I am always making something for someone.
Danielle Moody and Bethany Gleason also participated in our AACN Nurse Stories Project with StoryCorps.