November is National Hospice and Palliative Care Month.
Death is a reality of life but it’s hard for us to talk about. The medical community wants to change that. As our elderly and chronically ill population expands, medical professionals are looking at new ways to approach the experience of death by changing how we talk about it and how we plan for it. This work is centered in the field of palliative care which aims to ease the suffering of patients and families facing serious or terminal illness with a focus on quality of life.
Dr. Bob Gramling is division chief of palliative medicine at the UVM Medical Center. In this interview, he discusses the role palliative care plays. He also talks about the importance of making sure a patient’s and family’s concerns and wishes are heard.
Why are we afraid to talk about death?
Gramling: The short answer is probably that it’s one of the things we share that no one has experienced yet. Humans tend to fear the unknown or at least wonder about it. Probably the reasons we don’t talk about death may be as complex as any other human behaviors. Some is because it’s maybe not normative in whatever society or community we happen to be living in. But I do think a substantial piece of this is it’s just, it’s really the unknown.
What matters most when we face death or serious illness?
Gramling: Probably the most humbling piece of my job … Oh, there’s probably many humbling pieces of my job but one of them is whenever I have a suspicion of what I think matters to somebody, I’m inevitably wrong until I ask them. It’s somewhat superficial to say it depends and it matters and it differs by who the person is, but in reality, what I find is some people what matters to them is what is going to happen after their body has died. Either with regards to how they’re remembered or what happens existentially. Some worry a lot about the dying process. Is this going to hurt? Is it going to hurt me? Is it going to hurt my loved ones? And some aren’t necessarily sure what’s bothering them, but just the idea of all of the things that are happening can be confusing and scary. Those are probably the spectrum of things.
I think almost no matter what specific thing about dying may be important to any individual person, I have found almost without exception that every person who I’ve encountered who is ill and who is potentially suffering and is facing death, wishes to be understood and heard by those around them. That may sound like a small thing, but it’s a pretty big thing.
How do you work with patients? How do you create an environment of open communication?
Gramling: I think patients and families create it for me. I just have to give it some space. Oftentimes when you are meeting a new person and especially when patients are vulnerable. If you’re in a hospital it can be a sometimes undignifying experience. Patients worry. You know, what’s my agenda? Who is this guy? He came in and he’s from palliative care. I don’t know what that means. So part of the first time of meeting people, unless they’ve asked to see me and have a preconception, they might be wondering just to determine am I a safe person and trying to understand what my role is and why am I here. Once that barrier is breached and they get a sense that I am really here to understand who you are, what’s going on, and how I might be of help with what I understand to be happening, that they tend to create the space that we go to about what’s important to them.
What have you learned from patients?
Gramling: I’m frequently awed and surprised and interested to hear what matters to people may not be what I was thinking.
This may not be common, but something that we might experience with some frequency is when people are suffering with the idea of dying or with the symptoms of being ill in a time period where they’re not sure how long they’re going to live, when we ask, when someone may say, I’m afraid of dying, or that we may get there in our conversation. When you ask or explore what is most scary to you. Is it the idea of not being alive and what happens or are you worried that we’re not going to be able to care for you well when you’re dying? I find the majority of people that I’ve had these conversations with, it’s the latter. It’s the fact that they haven’t had a chance to talk with someone about what’s going to happen when things stop working.
Most people have experienced some degree of pain or suffering in some way when their body stopped working and it can be, “Oh, my goodness. Are the doctors and nurses going to be able to help me with this or are my last moments here going to be painful?” Oftentimes that’s one of the easier things to address is that, “Yes, we can do this well for you. It’s going to take some preparation. We’re going to have to talk about it. Or, you’re going to have to tell me who your person is so we can talk about it and have your back together but yes, we can do this well.”
What is palliative medicine?
Gramling: This is a definition that people worked hard on for Medicare to help define what palliative care is. As I often remark, I don’t necessarily turn to Medicare rules for poetry, but I think this is a really wonderful definition that captures the pieces of this. Palliative care means patient- and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and to facilitate patient autonomy, access to information and choice.
One of the reasons why I think it’s a useful definition is it helps address the fact that what we’re talking about here is suffering and that concept of suffering is different than disease. Disease is something that happens to our cells, to our tissues and to our bodies and suffering happens to persons. It’s how that experience of disease or illness influences our identity, who we are, our intactness as a person. It’s a definition that Eric Cassell uses in some of his writing. So for us to do our job well, we need to understand who that person is because when we diagnosis and treat suffering and anticipate it, I need to bring with me my understanding of the medical treatments of the pathophysiology and the things that the person’s body is experiencing. But I really have to have a really good understanding of who they are and how those experiences might influence their definition of self and personhood and how they are in the world. That’s one reason I think this definition is quite helpful.
How do we improve the experience of death?
Gramling: What do you need? What would be a good fit? The first answer is involving the people who are experiencing it, both us and the patients and families, but with respect specifically to the concepts of suffering. The more we can do that will help us know either when we walk into someone’s room, when we open their medical record as the people caring for them, we know a little bit about who they are, not just their diseases and the treatments. That would be a wonderful piece.
Harvey Chochinov has done some work. He’s a psychiatrist and a palliative care physician on concepts of dignity therapy which is essentially that. It’s saying, “I really want to know your story. I’m going to help organize your story and put it in either a piece of paper in the old style charts or in the medical record in a way that those caring for you will know how you define yourself, a little bit about yourself so it will help them care for you.” That is one step that the idea of who I am as a patient is not lost within all of the really important stuff too which need to be there about how to manage the diseases I have, but to get that up there and keep that front and center would be a … For me would be a wonderful way to continue re-engineering what we do.
What role does culture play?
Gramling: One of the beauties about culture is it gives us different forms of collective identity. In coming back to what I said before though, is one of the traps we can get in is making assumptions about people because we think we know the community or the identities or the cultures that they come from. I will want to ask them and explore, what is it that you bring to this situation you’re in that is important for me to know to care for you? Are there things about your culture or your background that I need to know as your doctor to do a good job caring for you? Some people will look at me like, “What are you talking about?” But most won’t. Most will say, “You know it’s important to me that you refer to me this way or it’s important to me that you really include my family in this conversation because they have always really been there for me and we make decisions together.”
When people are suffering as well, there may be traditions of their culture that we might otherwise ascribe to our background and upbringing that they’re no longer feeling are very functional for them at the moment. They may not choose to define themselves as still requiring those cultural norms in their care or in who they are at the time. Does that answer your question? Does this get at it a little bit?
What is the role of open communication?
Dr. Gramling: There’s a concept called beginner’s mind. It’s actually a Buddhist teaching. The idea is that as soon as we think we’re an expert we really kind of stop learning on some level. If we can get ourselves in a space that we think of ourselves as beginners, then we have the opportunity to be curious about one another and about who this person is. I think that’s something that we can aspire to is to not assume we’re experts about who you are.