Specifically, what I do is advocate for palliative care. Because it’s not just about the person who has the cancer, it’s about their family members who are caught off guard, who don’t have the resources, financial, emotional, or economic. Who’s going to help these people? – Dianne Gray
Johanna Lunn: This is the When You Die podcast. If it has to do with death and dying, we’re talking about it. Today’s host is Kelley Edwards.
Kelley Edwards: On the podcast today, we are joined by Dianne Gray. Dianne is an end-of-life doula and a certified grief specialist. And she joins us from her home in Florida. Hello, Dianne.
Dianne Gray: Hello. Thanks for having me.
KE: Oh, thanks for coming on. It’s very important. We’ve been talking about the role of end-of-life doulas. Primarily they offer support to prepare for death, provide comfort, and help with grief. But there’s an aspect that we don’t often equate with end-of-life, doulas, and that is advocacy. And that’s something that’s prevalent in your role.
DG: It is. There are a couple of ways to look at the word advocacy. So, it’s up to you which road you want to go down. Do you mean in terms of patient advocacy or advocacy for the movement? Because they’re different.
KE: I think patient advocacy is something that’s very important, because I don’t know that people realize they need that.
DG: Absolutely. In fact, I deal with a lot of those cases. What happens is, we have this kind of picture book version of oh, I’m going to get sick. And then I’ll get a diagnosis. And then I’m going to get a warning. And then I’m going to stay home, and then I’ll maybe go to a facility, and then I’m going to die. Well, we know that that is total fiction for many people. Sometimes, somebody has a car accident, and the hospital reveals that, hey, while we were doing this for your accident injury, we also found that you have cancer. So, this is what patient advocacy can look like in my case. Specifically, what I do is advocate for palliative care. Because it’s not just about the person who has the cancer, it’s about their family members who are caught off guard, who don’t have the resources, financial, emotional, or economic. Who’s going to help these people? I’ll give you a case in point. So, about two years ago I was called by a woman. This woman was referred to me. We set up an appointment, and I asked, “How can I help you?” And she was just a boohoo, sob mess, which we would all be, because her forty-eight-year-old husband was down to ninety-eight pounds. He was in a rehabilitation center as a step-down before he went home, and he had full blown cancer, epithelial cancer. And they had a three-year-old and an eight-year-old, and she had no idea what their financial situation was. Her husband just kept saying, “I just need to be able to do another round of chemo.” And so, what patient advocacy looks like here, as I said, is, “So what is it that I can do for you?” Because this family had totally not gone into the concept that they were in the birth canal of death, yet. They just didn’t. And that’s okay. So, they said, “Will you talk to our physician with us as a patient advocate?” And I said, “Of course, just ask your physician, your oncologist, for permission.” This was in a very large, major New York City hospital, with one of their best oncologists. It was heartbreaking. So, they asked him, and he said, “Of course. Dianne can call in virtually, COVID time.” So, I dialed in via FaceTime. And sure enough, the family wanted their prognosis. And they said, “Doctor So and So, we would really like to know what to expect. What’s going on here? And the husband said, “I just want to get better so I can have more chemo to beat this cancer.” And the physician said, “Are you sure you want your prognosis?” And then a second time, “Are you sure you want your prognosis?” And I’m listening to this. When I go in as a patient advocate or as an end-of-life doula in this situation, I do very little talking. And I do a lot of listening. Because sometimes what I do is empower. Sometimes what I do is encourage. Sometimes, in person or sometimes, virtually, as support. They’ve got an extra person on their team that can help. So, after the third question, “Are you sure you want to know about the prognosis?” that’s when I said to myself, “This is not going well.” And I said, “Excuse me, Dr. So and So, I’m their patient advocate. I’ve been doing this a long time. Thank you so much for your care and concern for this family. You’re the most educated person in the room. Clinically, you have the records, this has been your patient for how long Dr. So and So?” and he said, “X amount of years.” And I said, “Okay, they’re just asking you for your opinion, your professional opinion.” Which is what a prognosis is. It’s based on metrics or data and analytics. Like Liberty Health Solutions does on their platform. But it’s also saying, that for this patient, “Doctor So and So, you’ve got all the tests and the labs and all of that in front of you. They’re asking you, and they have a right to know, what you think the outcome is going to be here. Not using a Ouija board or an eight ball but do the best you can. But they’re not going to hold you to the fact that you say X or Y, they need your insight.”
It’s really quiet.
He says, “Well, point taken. I should have told you on your last visit a month ago, that you had days, two weeks to live.”
KE: Wow.
DG: This was on a Thursday. And I said, “Excuse me. I’m still here on the call.” I said, “I’m going to get quiet so that you can…I’m going to step back so you can speak with the family that you’re serving.” And he said, “Oh no, that’s okay.” I asked the family, “Would you like some time to talk to your physician?” And they said, “We don’t know what to say.” They were just, if you do the math, days, two weeks to live and they came in, and that means that this guy’s out of time according to the physician’s prognosis. And an expert physician, by the way. I said, “Well, Doctor So and So, would you like to do a palliative referral?” “Oh, I think that’s a great idea. It’ll take about two more hours for you to wait.” But because they’re in this hospital, I’m just thinking, “This is why I do what I do. This is the fire in my belly. This situation right here.” And we all hear this: rinse, repeat, over and over.
KE: And is this common? I mean, I find it a strange thing to think that you wouldn’t get that first and foremost from a doctor.
DG: No, I hear it. I could take up your whole podcast, story after story after story. And it’s not just the States. I had a patient in Toronto, same thing. Dr. So and So, “I know that you’re friends with your patient. But the family wants to know the prognosis.” “Well,” says Dr. So and So, “He has glioblastoma.” In my thinking, you’ve got to be kidding me. This patient has had glioblastoma for two years. He’s lying there. He’s immobile. He can’t speak any longer. When are you going to talk to the family? And what I came to find out, he was terrified, because I do go back. I’m not here to just complain. And I did go back, and I set up a call with him, and I said, “Look, we’re all human. We’re all human. We all do the best we can do. You’re an excellent physician or they wouldn’t have stayed with you for so long. But what happened there?” And by the way, with that family, I ended up referring – I, me – ended up referring them to hospice that day. And by two o’clock instead of spending another two precious hours of that man’s life, sitting there, in the hospital in the city, he returned and went straight into hospice. And I had implored the doctor. I said, “They have a three-year-old and an eight-year-old for God’s sake.” So, what I was trying to say is that, yes, I hear it all the time. The Toronto case, the Boston case, the New York case, the Atlanta case, the San Francisco case, constantly. And I know other people in the field that feel the same way I do and just get fed up. Someone in my extended family has multiple myeloma and has had it for a long time. The oncologist won’t refer her to palliative care. And she has an eighty something-year-old husband who has Parkinson’s, and there’s no connected care. She’s trying to figure out what to do with this physician, and then the physician, because the pain is really bad, overprescribes for these pounding headaches through the neurologist. But he never spoke to the oncologist.
KE: So, there’s a big disconnect, as we know, sometimes in the medical communities.
DG: All the time.
KE: Right. And are people aware of this when someone comes to you as a patient? Are people surprised that this disconnect is so obvious?
DG: I don’t think they’re surprised that there’s a disconnect. They’re shocked that there’s another way to do this.
KE: Right.
DG: What do you mean? You mean, you also work for a tech company that can connect all this? You mean, my doctor doesn’t pick up the phone and talk to the other doctor? They just don’t know what they don’t know. And this is not all on the physicians, by the way. It’s on the current payment models; it’s on the reimbursement models; it’s on the fact that Mr. Great Doctor has got to see a patient every eleven minutes. On a good day it’s eleven. So, it’s not just on them, or the fact that they haven’t had training in medical school, or after med school, on how to have conversations with patients and family members. Terrified.
KE: And this comes down to when you think about a patient getting this diagnosis or knowing that there’s something wrong.
DG: Mmm hmm.
KE: And they miss out on that crucial information at the beginning, and then all those other steps that need to happen can’t happen.
DG: Like advanced care directives.
KE: Exactly.
DG: Like financial planning.
KE: Mm hmm.
DG: Sitting down and talking to the children. Like sitting down and talking to the neighbors in your community about what’s going on with you, so that they can be a free resource to you. Food, clean your house, provide emotional support; to your church where they can pray for you if that’s important to you; or you mean all that, yeah.
I might sound frustrated and a little bit angry. I think it’s just what you hear is weariness from a situation. I’ll give you another reason. I went to lunch, and while I was there by myself on a Sunday afternoon with my big golden retriever, somebody says, “Oh, I know you. You work in, you know, hospice and palliative care. But you’re also a doula.” And I said, “Yes.” And she said, “Can I introduce my friend to you?” And I say, “Sure, sit down.” And she says, “Oh, I just want you to know that my dad died in hospice, and I just love hospice.” I said, “That’s wonderful. Thank you. Thank you for sharing that.” And then I said, “How long was your dad a hospice patient?” “Oh, twenty-four hours. It was phenomenal.” I just wanted to hit my head on the table, like, you’ve got to be kidding me, people. And she said, “He suffered so much for six months. It was terrible. He was in so much pain, broke my grandma’s heart that we couldn’t get the medication.” Blah, blah, blah, driving him to his appointments, yada, yada. And she’s going on about how great hospice was for the last twenty-four hours. And this man had a neurological disease. And I said, “Wow, so your neurologist, didn’t refer you to hospice care, much less palliative care?” “Oh, no, we just went the last twenty-four hours, and we’re so thankful for them.” You know? And you don’t want to tell a patient after the fact, after her beloved father has died. Well, let me tell you the fact of the matter, because it really could have been a lot better. So, maybe I don’t have that conversation with that person that I repeated here.
KE: Yes.
DG: I know that neurologist. He used to be my neighbor. That neurologist stopped me in public at the grocery store and said, “Hey, I think I might want to take a class from you on communicating with patients. I need to do that. In fact, my other buddy, he doesn’t have them [the skills] at all. So, maybe I need to do that.” And I’m thinking, “Okay, that’s advanced care, illness, proxies, decision making.” There’s a whole way in the United States. It’s about advanced care planning and the conversation movement. I was at the beginning of it back in 2010. We’re in 2022. It’s not just that people are getting a palliative care referral, it’s that they’re largely not getting a hospice referral. And shame on those physicians for not offering it up as an option. Right? That’s what physicians are supposed to do, do no harm. And yet, they’re not offering it as an option or referring it as a suggestion. Does that make sense?
KE: It makes sense. And so, my question on that is in the timing of things. How soon should that happen?
DG: Well, for palliative care it should happen from the moment they’re diagnosed with a serious life-threatening illness. Period. Full stop. If I run into one more person who tells me, “I’ve been coping with this cancer for seven years.” And meanwhile, you look at the patient who might be navigating in the moment well enough, but their family is devastated financially, emotionally, spiritually. The caregiver in the house had to quit their job. I’ve seen that firsthand. I’ve seen it within my own family structure, and I’ve seen it elsewhere with other families. And then for hospice, in the States anyway, it’s when someone is expected to have six months or less to live. And then for children it’s a little different.
KE: And we all need to know this. Because even if you are not facing it now, any kind of life-altering illness at this point, it’s something that will eventually happen. So, when you’re talking to people, and you want to give this advice, to say that you need someone to help you to navigate these channels. What are some of the important checklist items that you would give to someone?
DG: First of all, I would love for everyone to be empowered to know that palliative care is a right. You have the right to ask your physician for a palliative care referral or a consult. A consult is just a meet and greet, if you want to simplify it.
It’s a meet and greet with another expert who understands serious illness and potentially life-threatening situations. You want the best pharmacist who understands your drugs, who understands pain. Dying is hard work, and it can be ugly. So, you want a social worker who says, “Hey, how’s your wife doing? Oh, you notice that she’s hitting the wine a little bit more, and she’s withdrawing from her community? Let me talk to her.” Or a chaplain that stops by the house. A lot of people don’t have that. So, I want people to say to their oncologist, “Hey, am I eligible for a palliative consult or for palliative care?” And when the oncologist himself is not educated, and says, “Well, you’re not dying,” most people will say, “Oh, thank goodness, I’m not.” But the oncologist is wrong.
Palliative care is not hospice care. I mean, it is, but it isn’t. Palliative care is the umbrella. So, I would say go in and ask for a palliative consult. Now I want to preface all this though, by saying sometimes there are palliative oncologists who do embrace palliative care, who do the beautiful work. And those families are the ones that sometimes say, “I don’t want that palliative care. I’m not ready to die. I’m not ready for that.” Or if I refer to it as an end-of-life doula, and I encourage the family to ask us, I get, “No, no, no, no, I’m not. I’m not there.” So, I’m thinking, “But you are so close to death.” But I’m not gonna say it.
KE: Because we all have that denial, of course.
DG: Yes, Mate.
KE: In your role there is a certain amount of alleviating that burden on the family. And that is, I think, another thing that people need to understand that is crucial. Because I think if you’re in that situation as a family member, and you have to be concerned about those issues, and those actions, then you’re being robbed of your quality time together.
DG: Absolutely. Yeah.
KE: So that’s something I think that people need to know about that advocacy. It’s not just for people who are dying.
DG: Correct.
KE: Palliative care is not just for dying. It is a pain management.
DG: Well, it’s whole-person care.
KE: Right.
DG: So, the gist of it with palliative care is this: people live for years and years and years. Okay? Serious illness and palliative care. The research is from 2010. The research is so old. The New England Journal of Medicine published research that shows that many patients live longer because their bodies are comfortable, or more comfortable. Which is what palliative, palliate, means: to comfort, to provide comfort, care. So, think of it this way: if you’re a person with a serious illness, serious life-threatening illness, right? The cancers, the diabetes, COPD, etc. Your body is constantly working really hard. Oh, you’re not sleeping, your body’s not doing well; you’re not eating, your body’s not doing well. Your caregiver spouse or partner, whatever, is struggling, and then you’re not doing well. Palliative care comes and looks at everything for the patient and the family.
KE: What brought you to this? And how did this, the advocacy, become your focus?
DG: Okay, so I came into this because my dad died when I was nine of a heart attack. He was only thirty-nine years old. It was by the grace of God, that I had my last conversation with him when he had come on Christmas day. My parents were separated. And he had given me a Christmas present and given my brother a Christmas present. And I have no idea why, it was that intuition, mind, body, spirit connection that said, “Go tell him thank you.” I picked up my Christmas present. I ran down the stairs. And I got to his car window, and I knocked on the window and he rolled it down. And I said, “Thank you so much. Thank you so much for my Christmas present. I really love it. I love it. I love you.” And he looked at me kind of like, “Aww, I love you too, honey.” And I said, “Okay, see you soon daddy.” And he rolled up the window. And that’s the last time I saw him. Now if your last conversation with someone, it finally dawned on me, is going to be anything, how great was it that it was, “I love you.”
So that was the first thing, you know, conversations matter, because we never know. But then in high school I started studying neuroscience and chemistry and all of that, and then I went to college. And it’s interesting. Well, to back up for a second to when I was in high school. I had a thing for kids, a soft spot in my heart for kids who couldn’t move or walk or talk, because I used to watch those Jerry Lewis telethons. And it just stole my heart. And I said, “I could raise money for these kids.” I was a student athlete. I had jobs after school, you know, worked hard. We were a family that struggled. We were poor. And I thought, “Oh my gosh, these poor kids.” So, I raised more money than anyone in my school that year, oddly. Went to college, studied sports medicine, sports management, loved neurology, got married, had a child who had a rare neurological disorder that looked like all those kids that I saw on that telethon ten years earlier. And the arc and the connection of it all is not lost on me. And so, long story short, when I found out that my son had a rare, one in a million, statistically one in a million disease, I started talking to the families. Now, I had the gift of an education that understood how the brain works and how the messaging works to the other parts of the body, but they didn’t.
And they weren’t getting the things that they needed. Things were being done, things like, “Well, we’re going to have to cut off,” – true story – “so and so’s tongue.” A patient that had the same disease as my son, who died when he was fourteen. In a different part of Texas, they decided to cut out the tongue of this patient, who was also a child, because these kids chew on their tongue. And it’s just black. But if you can knock down the symptom that causes that dystonia, it actually moves to another part of the body. So, let’s think about that. It’s because doctors didn’t communicate as clearly as they could have. They told this mother in this part of Texas, that she couldn’t crush the medication and put it in the G tube, a pump that the kid had to have inserted in his spine. So that was crushed because of the other symptoms. The spot where the pump was was actually crushed because of the dystonia. And it just lit my hair on fire. We had things that went really wrong, that we did really wrong, like really bad. But then we also had some things that went right. I understand that doctors are human too. And they have their own families and there is such a thing as transference. But I also grew to understand that there are amazing people in the world, that when they’re connected can find solutions. There’s a doctor at Oregon Health Sciences that helped me with this. The doctor that diagnosed my son was from Paris. He gave me his phone number, so to speak, and he said, “Hey, here’s the golden trilogy for this type of symptom. Phenobarb, baclofen, Ativan.”
I mean, that’s how it gets better. And I started thinking about this, and I want everybody to have access to palliative care, because it makes a difference, especially in this disconnected society that we live in now, where people don’t know their neighbors.
KE: And there’s something that you mentioned earlier, a phrase, you said, “Connected care.” Is this connected in terms of different physicians? Or community? How do you feel that resonates with you?
DG: Okay, I’ll give you an example. I read some research last week that said (from the States, and it was organized by state), it was shocking, by the way, it said that in the last six months of a person’s life, in this certain state, they see thirteen people. And in this state, they see fifteen different people, and in X state they see twenty-one different people, and in a different state they see eight different people. Doctors. Let’s think about that. You’re at the end of your life, and you’re going to see your GI doctor in another city, who’s up the road. Then on Tuesday you’re going to schedule another doctor for your eyes because your eyes aren’t working properly because you’re on a new medication. And you’re also having a bowel problem. So now you’re back to the GI doctor, but your joints hurt, and so somebody referred you to a rheumatologist.
That’s what the last six months of life should be like? I don’t think so. So connected care means the Accountable Care Organization people are the primary care providers. So, the payers, the patients, all the clinicians, they’re all available to one platform. So, that if you’re the ACO, you can say, hey, I can see the Accountable Care Organization, I can see what’s going on here. If you are an insurance company or a payer, if you’re a PCP, primary care provider, you see what’s going on with your patient. You can see that they are taking twenty-one different medications. If you’re a hospice person you can see, for example (it’s called polypharmacy), when they come to you, that some people are literally taking thirty-five medications. And I’m here to tell you that when a person is the spouse, and they arrive at hospice, or at the doctor’s, and they don’t remember all their medications or their dosages, this helps to simplify things. It also helps because the clinician, or say the primary care provider, can see, oh, my goodness, my patient, Mrs. Whomever, was diagnosed with cancer because the claim has come in. And he can see that based on metrics, ABC and D, that Mrs. Smith might literally have only three, six, nine, or twelve months to live and then provide that proper referral, whether it’s a palliative care consult, or hey, guess what, you’re eligible for hospice care, because you have six months or less. And he can have that thoughtful, or she can have that thoughtful conversation. It doesn’t sound like, “Hey, here’s a letter, I’m sorry, you’re gonna die.”
KE: And when you do get that diagnosis, who is the first person that you should be reaching out to?
DG: Oh, boy, it depends on the person, and it depends on the situation. I mean, I think that when somebody has a diagnosis that you have a life-threatening illness, COPD, diabetes, you know, I think everyone has a natural reaction like, “Well, okay, I’m gonna live with this. My doctor’s got it. I’ve got it.” Listen, I have two parents and they each have a chronic condition. Even my own mom, if I say palliative care, “Oh, no, no, no, no, we’re not ready for that.” So, I think that the person who is the patient, or the family member, could be inquisitive, look around, Google it in your area. If you have parents that are older, Google it and call the palliative care director at your local hospital or in your area as part of your hospice. Many hospices now have palliative care programs embedded within them. Think of it this way: Bloomingdale’s has seven stories in New York City. It’s a beautiful, blessed thing. [laughter] But if you need shoes, you’re going to skip floors one, two, and three and go to four. You don’t want to waste time, you’re on a deadline, you know, you got to get these, and you got to do your thing. Not to minimize the seriousness of the situation. But you really want to know what’s available to you. Because you gotta get this figured out. You don’t want to be uncomfortable. Yet, people tolerate pain for so long, because they also feel that there is no other choice. And it’s just mind-bending to me.
KE: Do you ever have an instance where the family is holding back things because they don’t want to accept it?
DG: Constantly.
KE: Really.
DG: I understand it. I’ll never forget it. My son’s neurologist called me on Christmas Eve, and said, “Dianne, I have bad news for you. But I really want to call you after Christmas.” I said, “Well, you might as well tell me now.” What the heck, this isn’t gonna make it better if I wait till after Christmas, right? And I said, “Tell me.” And he told me that my son was going to die. And my son at the time was four, turning five and I really wasn’t able to process it. The thing is, I think that most people aren’t able to process the enormity of the conversation. So, their natural reaction is to put their hand up and go, “Talk to the hand, not hearing it, not today, not doing it.” But when they leave, and they get out there in the street, or they get in their car, or in the middle of the night, when they don’t feel good, that’s when people start doing the thinking. And they really start to ponder. It’s called Life Review. What’s my life all about? Is there a God? A lot of people get angry at God for the situation. I did everything I needed to do. And now why is God not listening to me? Or my prayers? But people forget often, that with 100% certainty, they will die. Yes, absolutely. They will die. Then I have those people that say, “Yeah, but not now.” And they’re nearing end of life, and I say, “So, do you want to schedule it? Let me know how that works.” In a more compassionate tone, of course, but we can’t schedule it. And then when you look at it, you start to peel back the layers of the onion gently, through many conversations for most people, you get to the fact that they postpone leaving. And that is the worst. It’s a bad way to die. But I used to work twelve-hour days, and I missed my kids, you know? Third grade, ninth grade, college graduation, whatever, because I was away on a work trip. No, this is it. This is the rodeo, show up. And so, to your point, do they push back? Of course, they do, because of regret, sorrow, unfinished business, which looks like, “I always wanted to go to Africa, but I haven’t gone.” Or “I always wanted to tell off my spouse.” I mean, it’s true. I’ve seen a lot of things. “I want to make amends with somebody that hurt me or someone I’ve hurt.” And that’s where Dr. Ira Byock’s work is meaningful. He has this great book, you’ve probably seen, it’s called The Four Things. They are: Thank you, I love you, Please forgive me, I forgive you. Powerful stuff.
KE: We’re going to close in just a few minutes. And I think that maybe I want to bring us back to the point of someone who needs to have someone in their corner, someone who needs to be able to concentrate on themselves as the dying person or as a family member dealing with a dying loved one. And the importance of having that advocate for them. What are the steps that someone can take to put an advocate in place?
DG: Okay, first, it’s important to choose wisely. Because when one looks for an advocate, it can be a neighbor, it can be a community member, it can be a buddy, it can be a family member. I mean, in the one family that I mentioned, where the woman is older, and she has multiple myeloma, her husband is her advocate. He goes, and he takes notes, copious notes, at each of her doctor’s appointments. Why is that important? Because of shock and fear. And all of these are filters for our ears that the words don’t sometimes sink in. What did the doctor say? Am I really supposed to whatever? So, an advocate can be a family member that is clear-headed, functional in terms of the details. It can be a neighbor, it can be a church member, it doesn’t have to be a professional advocate. But when someone needs a professional patient navigator, patient advocate, end-of-life doula, a death doula (by the way, I didn’t make up the phrase, I don’t know why it’s doula, but okay), when you need that, there are really good networks out there. Google them in your area, interview them like you would for anything else. And by the way, I read some research about how much time people spend shopping for a car. That’s like some astronomical number. They kick the tires, they do research, read Consumer Reports. But my goodness, when they’re about to die, people don’t do the homework on, “What am I supposed to do?” So, an advocate can really help to facilitate conversation between family members, first and foremost. Create cohesion, create space, and breadth, and peace. In a home where the emotions are so high, a really good advocate, or end-of-life doula really, truly can help create a feeling of harmony and understanding and peace and at the same time, can also say, inwardly at least, hey, not so fast, to the doctor who’s trying to run out the door. I mean, I’ve called a physician back in before. You must have a little bit of chutzpah, you know, strong spine, and go out there and say, “Hold on a second. You just laid out a bunch of medical terms on these people in five minutes. And I heard you and I understand what you’re saying, but they’re clueless.” The best doulas or patient advocates sometimes are the listeners and the observers, because they can see that the family doesn’t understand. They can see the disharmony. We built the bridge with the hospices or the palliative care programs. We’re non-medical in nature. So, we’re there to be bridges of understanding. And I call that doctor back in and I say, “I know that you just told them that you cracked open his chest, and he had a heart attack, after having eleven strokes on your table, and that he’s gonna die. They didn’t get that. You left and they’re thinking, ‘Oh, hey, it’s gonna be fine. He’s gonna give him some medication, and he’s gonna be fine.’ Can we redo that?” I mean, he looked at me and he said, “Who are you? And I said, I’m a patient navigator. I’m their advocate.” “Oh, all right. Yeah, sure.” And he came back, and we had a 2.0. And all I did was insert appropriately timed questions. “So, what is it that you’re really trying to say, Dr. So and So?” They care. They love their person. And when the family pushed back really hard against the doctor, I had to ask them, “What would your loved one” (who in this case was fifty-three years old and had eleven strokes in a period of six hours), “What would your loved one want? Would he want to live in a wheelchair or just be an innocent for the rest of his life? You guys decide. I have no skin in the game here. This is on you, but I’m here to help you get the experts involved, so that you can make the decision that’s best for you.” So, the other thing is I think that when a doula is out of bounds is when they start weighing in on medical opinion. That’s the doctor’s role. That’s the nurse’s role. There’s the chaplain’s role, there’s the social worker, there’s the doula. I’m there to provide comfort. I’m there to help navigate. I’m an extra layer of support. That’s my job.
KE: Well, I think this has been a really helpful conversation. And I am glad that we got to address the necessary things that we have to look at, because it’s big enough when you know that you’re going to die. And when you know that someone you love is going to die. So, knowing that you are very entitled to have someone in your corner and to speak out on your behalf, I think that’s a really valuable piece of information that people need to know.
DG: Thanks. I think that the main thing, to answer your question before, is that if a family wants a patient advocate or patient navigator, the best thing to do is to talk to the case manager at your health care system or your hospital. They’re not going to love it, by the way, because another set of hands is in the thing. But also, ask your friends, “Hey, who helped you through this?” Ask your neighbors, “Who do you suggest? What can we do?” I think, too, that it’s important to realize that about the death doula. Oh, and by the way, they’re going to have you sign paperwork, the physician’s office, so that they can share medical information of this patient. I have every single person I work with talk to their physician and sign a sheet of paper so that they can talk to me freely. That’s HIPAA [Health Insurance Portability and Accountability Act]. So, that’s super important. The other thing too about an end-of-life doula that I want to bring up is that, besides being navigators and helping the flow of what’s going on in terms of process, understanding the dying process is important. Understanding caregiving is important. Understanding grief, and how to have meaningful conversations surrounding grief, because everybody grieves differently, and they should. So, understanding the different modalities and things that are helpful. Research, in terms of grief and grieving and death, is, important. Because that way, you’re not using a square, which does not represent how family A did it, with a circle, which is how family S is doing it. Everybody’s different. So, the research is meaningful. And I think I’ll do this, to go in with the feeling of I want to provide comfort and assistance and guidance, the way that nursing used to be. I’ve had so many nurse friends say, “Dianne, I am out of here. I don’t want to do this anymore. I don’t want to fill out records and forms on my EMR [Electronic Medical Records],” and yada yada. They just don’t like nursing anymore. And that breaks my heart. But that is the way it is.
KE: Well, I thank you so much. This has been really helpful.
DG: Oh, thank you. I appreciate your podcast. It is really informative. I think that you are doing a service. So, I might be doing a service in my way. But what you’re doing is you’re seed planting for a large swath of a population, and I think that’s so important. You’re doing great work.
KE: Well, we hope so. This is our connected cares, speaking with people like you. So, thank you so much.
DG: Thank you. Have a great day.
KE: Thank you.
