Your health care team: Spotlight on nurse practitioners
Webinars | July 21, 2021
In this webinar, DWDC was joined by nurse practitioners Valerie Cooper and Elizabeth Leonardis, who shared their insights, experiences and perspectives related to end-of-life care.
Tip: We’ve uploaded timestamps so you can jump straight to the questions and answers that interest you most. Just select “Watch on YouTube” above, and read the description underneath the video.
On July 21, 2021, Dying With Dignity Canada hosted a webinar focussing on the work of nurse practitioners in Canada.
Our speakers included:
Valerie Cooper, a Hospice Palliative Care Nurse Practitioner with Home and Community Care Support Services South East. She sees patients in their homes in a variety of geographies, from urban to remote. She works in a shared-care model with patients’ existing primary care providers to support patients with malignancies and end-stage organ diseases to die in their preferred place of death. She lectures in the undergraduate program at Queen’s School of Nursing and has developed and taught an elective undergraduate course on hospice palliative care nursing. She has also contributed to a continuing education course for nurse practitioners on palliative care through the University of Toronto. Valerie is a member of the Dying With Dignity Canada’s Clinician Advisory Council, as well as many Communities of Practice related to both Palliative and End-of-Life Care and Medical Assistance in Dying. She recently became co-chair of the NPAO Palliative and End of Life Care Community of Practice.
Elizabeth Leonardis, a nurse practitioner practicing in Vancouver, BC providing primary care to homebound elders through the Home ViVE (Visiting Vancouver’s Elders) program. She has also been a MAID Assessor and Provider since 2017. While originally hailing from the US, she now calls Canada home and recently made it official with Canadian citizenship.
This blog post will summarize some of the key takeaways from this informative session.
If you prefer to view this content in video format, you can access the recording here.
A Registered Practical Nurse (RPN) or a Licensed Practical Nurse (LPN) holds a diploma degree. RPNs and LPNs are generally tasked with taking care of patients who have a predictable trajectory. This could be in a hospital setting or in the community – they would take care of patients who are going to get better or are low risks for complications.
A Registered Nurse (RN) holds a bachelor’s degree. RNs work in complex areas like ICU and post anesthesia care units, where critical thinking skills are essential.
A Nurse Practitioner (NP) holds a master’s degree that is clinically focussed. It is a bigger scope of practice that includes more complex cases. There is variation across the world, North America, Canada and our provinces in the scope of nurse practitioner work. Generally, in Canada, a nurse practitioner works as an autonomous professional – they do not need oversight by a physician or other health professionals. Physicians and nurse practitioners have similar practices. They come from a different education stream and from a different lens, but do very similar work.
Key takeaway #1: A day in the life of a nurse practitioner is always different
The work of a nurse practitioner can vary widely, but typically they work in the community, from home, in a clinic or at a hospital. Nurse practitioners (NPs) are usually employed by the local health authority as a salaried employee. They can have their own case load similar to a physician. There are still barriers in some jurisdictions, but NPs can order medications, some tests and diagnostics.
Key takeaway #2: There are many misconceptions about the work of nurse practitioners
The work of a nurse practitioner is still not commonly understood by the general public. The many classifications of nursing (see definitions above) do contribute to this issue, but both speakers commented that there is confusion outside and inside the health care community. They still feel like they are trail blazers and that, over time and with experience, people will begin to better understand the role of nurse practitioners.
A common misconception is that nurse practitioners must work with, or under, a physician. They are in fact autonomous practitioners with their own patients and caseloads for whom they are the primary care provider.
People often ask, “Where’s the doctor?” Both speakers shared that they will occasionally have to say, “I am the doctor, only I’m a nurse practitioner.” There is still work to do clarifying the work and the role of NPs in the health care community, but it is slowly improving.
Key takeaway #3: Death and dying is still not a topic that is well addressed in health care
In most nursing education, death and dying is an elective course and not considered an essential curriculum. This gap was identified by both speakers, as inevitably a nursing student is going to experience death no matter what area of medicine they choose. Normalizing death and dying would benefit everyone involved in health care. The legalization of medical assistance in dying (MAID) has helped to open up conversations about death, as people make the choice to end life on their own terms, but there is still work to do.
Many health care professionals are reluctant to discuss MAID with patients. There is a concern that talking about MAID could be seen as coercion. Both speakers expressed that with specific training, pre-emptive conversations about end-of-life can help people prepare through advance directives and will ease stress and anxiety when end-of-life does come.
Key takeaway #4: Nurse practitioners can be MAID assessors and providers in most areas of Canada
Nurse practitioners make up 7% of MAID assessors and providers in Canada.
In British Columbia, NPs can be both MAID assessors and providers (there is some nuance between health authorities).
In Ontario, NPs can assess but not always provide MAID.
In Quebec, NPs cannot be involved in MAID assessment or provision.
One major challenge for NPs who would like to be involved in MAID is that there is no payment mechanism in place for them outside of their employment to bill for medical assistance in dying. This has implicated how many nurse practitioners are willing to provide MAID outside of their employed hours and responsibilities. Some NPs are providing MAID for free in their communities until a payment method is put in place.
These are just a few of the insights gathered from our spotlight on nurse practitioners.
Today we are joined by nurse practitioners, Valerie Cooper and Elizabeth Leonardis. Valerie Cooper is a hospice palliative care nurse practitioner with home and community care support services Southeast. She lectures in the undergraduate program at Queens School of Nursing and has developed and taught an elective undergraduate course on hospice palliative care nursing. Valerie is a member of Dying with Dignity Clinical Advisory Council, as well as many communities of practice related to both palliative and end of care and MAID. She recently became co-chair of the NPAO palliative and end of life care community of practice.
As well joining us is Elizabeth Leonardis who is a nurse practitioner practicing in Vancouver, BC providing primary care to home-bound elders through the home VIVE, which is the Visiting Vancouver Elders Program. She has been a MAID assessor and provider since 2017. Well, originally hailing from the United States she now calls Canada home and recently made it official with Canadian citizenship. I like to thank both our panelists for joining us today and now hand it off to Samantha to begin the webinar.
Great. Thank you so much for that introduction, Sabrina. And again, welcome to the two of you. We are so grateful to have you here in conversation with us today. So to start it off the first question is what inspired you to enter into the nursing field? And Valerie, if you’d like to begin.
So this is a loaded question and I got in trouble when I started and saying because I was fully honest with my nursing instructor. And I don’t think she was overly impressed because everybody else in nursing school had these really emotionally touching reasons why they became nurses. Which is a very common reason. And in our professional where people get into it, either it’s a familial profession, their mom, their sisters, aunts, their grandmothers were all nurses. Or they had this profound experience in the healthcare system with the nurse and just felt like it was a calling for them. And those are all totally valid reasons. I had none of those. Nobody in my family is in healthcare at all. I had luckily never had experiences with nursing or healthcare before I started school. I had actually thought about going to medical school.
And I did a co-op placement in high school at he Queens anatomy department. And so I had a lot of exposure during that placement to medical students and students who were in pre-med trying to get into medical school and it was cut throb. And I was like, “I don’t know that I want to go to school for four years and a science degree to try to get into medical school and not get in.” So I thought you know what? I’ll go into nursing. It’s in healthcare. I can do my science based learning and know if I still feel like I want to do medicine after that, then I totally can. And by the time I finished my four years of nursing, I was in love with it. And I’m super excited with the opportunities that I would have with this profession.
So I actually ended up finishing my undergrad at Western and then because of the weather in London, I moved to Texas and worked down there for two years in a cardiac ICU, which was an area of nursing I had never anticipated working in, and loved it and loved the broad scope that ICU nursing allowed me to work in.
And the autonomy that I had both in the ICU and working in Texas, because it’s still pretty much let you do anything down there as a new grad. So that was exciting. And then I decided I wanted to further push that autonomy and scope of practice further. So I came back to Canada and did my NP at the University of Toronto. So sort of in a typical, I think, or maybe typical reason why people end up being NPs. But I’m still very grateful that my background as a nurse practitioner comes with the registered nurse background. I think it adds so much to our role and especially in palliative care. So very grateful that I came around to the side of the bed sort of the long way around.
Thank you. Yeah, that’s cool. How you sort of stumbled into it and it ended up being the right choice, which is always really nice to hear. Elizabeth, how about you?
Thanks. Really quick, I just want to mention I’m here from Vancouver and that my land acknowledgement is living, working, and playing here on the unseated territories of the coast, Salish people including the territory of Musqueam, Squamish and Salish nations. And thanks to Dying with Dignity for welcoming us nurse practitioners and spotlighting us today.
I actually have a somewhat similar story to Valerie. I thought medical school and becoming a doctor was what I wanted to do since I was quite young. And that was the plan and then started working in a doctor’s office. And I grew up in states in California where nurse practitioners are quite commonplace. I recall going to a nurse practitioner when I was young. And so when I sort of understood and learned what a nurse practitioner did and what their role was, I changed course a little bit and decided to become a nurse with the intention of eventually becoming a nurse practitioner. And then that journey brought me to Canada, where I came to do my NP course about 12 years ago and never left.
Very cool. It’s interesting that you both ended up in this, or I guess you were already from the states Elizabeth, but that you both have spent some time there, which is, yeah, a fun coincidence.
So next would be, can you describe the differences between RNs, NPs and RPNs? Whoever would like to go first?
I think RPN maybe an Ontario term. I think we may have LPN here, but my understanding is both LPNs and RPNs are a diploma degree with some sort of more limited education. So some restrictions on what they can do as nurses. And then an RN has a bachelor’s degree in nursing with quite a full scope of nursing. And then NP what Valerie and I both do is a master’s degree, a very clinically focused master’s degree to become a nurse practitioner, a much bigger scope of practice.
Yeah. And I’ll just add so from a practice perspective, LPNs and RPNs generally tasked with taking care of patients who have a pretty predictable trajectory. So in a hospital setting or in the community, they would take care of patients who are going to get better or who post-operatively they’re very low risks for complications. Whereas RNs work in complex areas like ICU and post anesthesia care units, where things can go sour pretty quickly, and people need sort of really robust critical thinking skills. And then NPs have a broader scope of practice as Elizabeth said that often mimics sort of a family practice or general practitioner scope of practice. And there’s been a lot of variation across North America, across the world, across Canada, across the provinces, as far as scope of practice of nurse practitioners goes, and it’s only within our careers. Elizabeth and I that things have become more cohesive across the country and across North America as to what nurse practitioners are allowed to do.
I think there’s still some discrepancies in the US in regards to NPs working as completely autonomous professionals, meaning that we don’t need oversight by physicians or other health professionals. We own our practice in that we make the decisions and we don’t need someone else looking over our shoulder and making sure that we’re doing things the way we’re supposed to. It’s on our own conscience and license to do that. But yeah, it’s only been in the last five years that we in Ontario have been granted the advanced scope of practice to be able to order controlled drugs and substances. So that makes a big difference in MAID meaning that we are allowed to participate because we can prescribe the substances involved in MAID. Whereas right prior to the legislation changing that would not have been allowed in Ontario.
Yeah, that’s so interesting. And that’s quite recently, or relatively recently, at least. So that’s great to hear those changes are happening.
When I first started practicing, I don’t know, NBC Elizabeth, it was the same for you, but we a list of medications that we could order. We really couldn’t order any tests. In the hospital setting often had to work under medical directives. So it was a much, much narrower scope of practice than it is now. And there are still some barriers in Ontario. We’re working on having authority to order CT scans and MRIs independently. But so those little nuances, I’m not sure Elizabeth, whether in BC, you guys are allowed to do that on your own yet?
Yeah, no, I guess the scope of practices is broader here in BC and always has been, but we initially couldn’t do controlled substances. So when you’re thinking about a lot of the pain control medications, opiates, and other medications, but pretty open on what we could order in terms of lab tests, diagnostics, and most medications, but there were some specific limitations around what medications we could start versus continue. But that’s really opened up significantly here in BC.
I think everyone, we restrict somewhat how they order MRIs, but physicians included. But in BC it’s a pretty wide scope of practice. And I do do a lot of comparing myself to a physician at times because people know what a physician is and what a physician does for them or for their family members. And so in a lot of ways at this point I can practice very similarly to my physician colleagues and I do, and we both carry case loads that are identical. They don’t have more complex patients than me. We have very similar practices. We come to this from a different education stream, from a different lens, but we have very similar practice.
And I would just add to that. I think in Ontario, it’s a bit different where as you mentioned, the scope of practice is a little bit behind where it has been in another provinces in the country. And so is sort of sometimes the approach of which types of patients, nurse practitioners see in certain settings. Definitely not across the board, but for example, in some emergency rooms, the nurse practitioners will see specifically less complex, more simple cases from a turnover perspective. And the more complex patients will be seen by a physician. And we’re definitely working on breaking down those barriers and helping everybody within healthcare to see that nurse practitioners can see complex patients. And as Elizabeth pointed out, just come at things from a different background, but that doesn’t mean that it’s necessarily less competent background, for sure.
Yeah, absolutely. What are some of the most misconceptions you hear about nurse practitioners?
I think the thing I hear often is what… Well, not as much anymore, but what is a nurse practitioner? It’s one of the reasons I actually left working as an NP in the hospital because it was incredibly frustrating day after day after day to have to constantly explain to not only the public, but also physician colleagues and healthcare colleagues of what a nurse practitioner does and what we’re able to do. And as I mentioned, that was fairly early on in NPs having a wider scope of practice. And it was right when the term nurse practitioner became a protected title in Ontario. So we were required to call ourselves nurse practitioners and the hospital wanted us to call ourselves advanced practice nurses, which is, yes, we are that, but we are more than that. And our license says nurse practitioners. And so there was some confusion about exactly who we were and what we could do. Especially in Ontario, well, I guess, licensed practical nurse and registered practical nurse often get the nurse practitioner while you’re very similar and having to explain the different levels of nursing.
And then sometimes, especially with my elderly patients, their kids are like, “We’re just going to call you doctor.” Okay, am like, okay. Again, because it’s simpler because they understand what a doctor does and they understand that that’s what I’m going to be able to provide for them, and they don’t really understand the nuance, but yeah.
Yeah. I have similar experiences of just a misunderstanding kind of who I am. Still unfortunately with a lot of healthcare colleagues pharmacies trying to call in a prescription for somebody and not understanding. So calling to check on how a patient of mine is doing in the hospital. And sometimes I have to just after saying, I’m the nurse practitioner, I’m the MRP for most responsible provider I’m their primary care provider. I just say, I’m their doctor. And then everyone goes, “Oh, okay.” I say, “But I’m not a doctor, I’m their nurse practitioner.”
And so there’s a lot of doctor. I have a lot of patients that I work with that have dementia, and this is not a concept that I can help them that’s important for me to clarify. The importance is that they understand what my role is in their healthcare. And that is I am “their doctor.” And I think that as nurse practitioner become more integrated in our healthcare system, future generations we are not going to have to make those distinctions. I’m not going to always have to say, I’m your doctor. But for now it’s still evolving. I think in BC it’s 16 years we’ve had NPs. That’s a very short time that the profession has existed.
It’s interesting. I know in Canada, we’ve had NPs since the 1970s. They’ve been around for quite a substantial period of time, but in very small pockets. It hasn’t been something that’s been across the board. So it is interesting to see people’s reactions and their understanding. I have had a lot of positive reactions that people’s experience with nurse practitioners has been overall really positive. And when they hear that I’m an NP or they’re going to be seen by an NP, it gives them a lot of faith. And they look forward to being seen by a nurse practitioner specifically, not necessarily rather than a physician, but that their experience with other nurse practitioners in the healthcare system has been really positive. And so they’re really looking forward to another positive experience.
Yeah. I’ve heard that as well from other people’s experiences. And it’s unfortunate that even internally within other healthcare professionals or providers, those nuances aren’t really talked about or understood. So yeah, hopefully things do change as I think Elizabeth you said moving forward.
I think one of the things I’ll just add to that Sam is that unfortunately in nursing we don’t do our profession a lot of favors by having so many variations of a nurse. Like there’s clinical educators, and advanced practice nurses, and LPNs, and RPNs with extended practice. And we can also call ourselves nurse practitioners, but also registered nurses in the extended class. So you can see why, if you’re not in the nursing profession that the variety of names and titles can get a bit overwhelming and you might just tune it out and you’re a nurse. And oftentimes I’m like, yeah, I am a nurse. That is right.
Yeah. A lot to keep track of for sure. So what are some of the unique challenges faced by nurse practitioners?
Go ahead Elizabeth.
I think that kind of is joined with the misconceptions too. I think when I was looking at that question, I think for me a lot of the challenges just come around, defining our role and finding where we fit into the healthcare community. And I guess in my day to day, it’s understanding that I am somebody’s primary care provider. I am their most responsible provider. There is no doctor, they get me. And usually they’re fine and they’re great with that. But I’ve thought there’s always this thought that, but there must be a doctor somewhere, where’s the doctor?
And so once I think that’s the biggest piece is that I am autonomous practitioner. I have full responsibility for my patients. And there is no other person overseeing me. I think that even in, again, in the healthcare community I think some of the biggest misconceptions are from within our own healthcare system and the challenges that I face. But I think that’s just part of our role as trailblazers. And it seems like 10 plus years into it, you shouldn’t still be trailblazing, but I think we will, we will for our entire careers as nurse practitioners.
Yeah. I would totally agree with that, but it was something I was pretty frustrated with at the beginning of my career. This is my 11th year as an MP. And yeah, I think I’ve just come to accept it as part of being a nurse practitioner. It’s not something that we’re going to… It’s definitely lessened for sure. I think the other thing that I’m noticing, especially coming from the state. So when I worked in the states, it was mid two 2000s and they had physician’s assistants down there, which come from a military background, or it originally came out of the military. And physicians assistants are not independent practitioners, so they work under a physician. And so down there it’s quite common and that practice has started to become more commonplace in Canada. McMaster is one program I know of, I’m not sure if there are any in other parts of the country. But physician’s assistants and nurse practitioners often get confused with one another because of our roles being fairly similar.
But as Elizabeth and I both pointed out being a nurse practitioner, we are licensed independently. We are responsible for our own practice. Whereas a physician is works underneath the physician in that they can make suggestions, but the physician signs off on the plan of care prior to it being put in place. And oftentimes physician’s assistants are paid out of the physician’s pocket. So they actually are employees of that physician. But there are becoming more and more PA positions opening up in hospitals and in private settings across Canada. So I think that’s adding a little bit to the ongoing confusion of how our role fits into things. But the bottom line comes down to the fact that, that we get to run the show when it comes to our practice. And we don’t have somebody looking over our shoulder and making sure that things are done a certain way.
There was just a question too, in the Q&A that I thought can just fit in really quickly here is sort of how we’re paid. So physicians bill the ministry, fee for service is a term we use typically is how a primary care physician would operate. And for myself and for most nurse practitioners I’ll speak to BC, I’m a health authority employee. And so I actually am salaried. And there are some variations of that role. But typically a nurse practitioner is salaried. We don’t build the government for individual services and we do not charge patients to provide care unless there were some private clinic. But I can’t speak to that because I don’t know of any. But yeah, we’re salaried employees.
Yeah. And that’s the same in Ontario as well. So I am equivalently to Elizabeth an employee of our health authority or more home and community care services at this point in time and Ontario. So I am a salaried employee and I was in the hospital setting as well. So that’s a difference as well in the hospitals setting physicians continue to bill, so they are not considered staff or employees of the hospital, even though they have privileges there. Whereas NPs are staff and employees of the hospital and also can’t have privileges at the hospital for admitting and discharging patients. So it does add a little bit of confusion from a workload perspective, as well as some of the things like benefits and being unionized. So there’s sometimes a little bit more or different politics involved with nurse practitioners than there are with physicians, despite the fact that our scopes of practice are quite similar.
Interesting, yeah. Thank you for tying that in there, that did fit really nicely. So what does a typical day look like for either of you, if you would be able to say that there is a typical day?
Yeah. That’s the caveat, right. So in this role I work in the community. So I work from home, even pre-COVID I worked based out of my home. And I make my schedule day to day, week to week. And I get to decide of my patients who require palliative care, whom I need to go and see today. So sometimes I have standing appointments where I see somebody on a regular schedule and other times I need to make changes and see somebody sort of more urgently. My catchment is anywhere from on the same street that I live on to an hour and a half drive north one way to see patients. So I have quite a large geography. And that means I see quite a variety of patients and socioeconomic situations. But all of them are in the middle to late stages of a life-limiting diagnosis.
And so when I go and see a patient, I see them for up to a two hour visit. When I see them initially we discuss all kinds of things mainly looking at symptom management and making sure that they have supports and questions answered in regards to their illness. And I will either make it home in time to send off my orders or I’ll pull over where I have internet and my daughter card and send off my prescriptions and my orders or pain pumps or symptom response kits. I write up all of my own notes and have them faxed off to my healthcare colleagues because we still love the fax in healthcare. I often field a lot of phone calls through the day from community nurses who will reach out to discuss our mutual patients, either for updates or need to make changes to a pain pump in the home.
And I’ll do some math on a piece of paper in my car while I’m pulled over and give them new orders to change the pump in the home. I do a lot of phone calls with my interprofessional colleagues or OTs and RTs to make sure that everybody’s on the same page in supporting the patients at home. And I do a lot of phone counseling with the caregivers of my patients. So they need some support, a listening ear to be told that they’re what they’re doing is really hard and it’s okay to feel overwhelmed. So I feel like it wasn’t something I necessarily learned in school, but I do a lot of counseling and supportive behavioral therapy on that respect. So the days fly by, I spend a lot of time in my vehicle, but yeah, I love that every day is different. And you start a workweek, this is what it’s going to look like. And then by the end of it, you’re like, yeah, not a single day went the way I thought it was going to.
I have a somewhat similar practice, but fortunately a much smaller geography. I work in the city of Vancouver and all of my patients are within city limits. I am in a primary care practice called Home ViVE (Visiting Vancouver’s Elders). We have some eligibility criteria of typically 80 plus a certain level of frailty, so inability to manage someone’s… We call them ADLs or IDLs manage their own bathing, dressing, eating, needing support.
A certain level of support is needed to qualify for our program and to not have a doctor or nurse practitioner that can visit you at home. And we work super closely with the community health centers in Vancouver to help support patients at home. Minor fellow elders, I’m their primary care provider. It’s a lot of palliative care because a lot of my patients are at the end of their life.
And some of them have cancers, some of them have chronic disease that’s limiting their life. A lot of my patients are suffering from the end stages of dementia. And again, I also visit them at home and can provide care on a routine basis, answering urgent calls for patients who need to be seen. I work with an amazing team of allied health, so we’ve got nursing and rehab support as well.
I can refer to my colleagues if I need to. And we also have amazing physicians who provide 24/7 service access to our patients. They can call on the weekends and evenings because obviously people get sick and need care at those times as well, and try to support end of life in the home if we can. Some of our patients end up going to a nursing home at some point, and I typically relinquish care to whoever is at the nursing home, because our hospice are best served for patients trying to stay at home.
That’s my day to day, Monday to Friday, full-time job with the health authority here in Vancouver. But the other piece of work is providing medical assistance in dying. I’m an assessor and provider and have been since 2017, for the health authority I work in and also for the neighboring health authority, and that when I can fit it into my day. That’s always very different and like Valerie, my days are very different from day to day and you never know what they’ll look like, which makes it really fun and incredibly rewarding work.
Such a huge scope of so many incredibly important tasks and jobs so it’s amazing. Okay, this question is a little different in nature than the other ones we’ve been asking so far. In your experience, is death something that is commonly, or openly talked about within the nursing community? And have you found that over the years, this has changed in any way at all?
No. I can’t recall any formal lecture or talk in my undergrad program, or my nurse practitioner program about death and dying specifically. I’ve always had a fascination with death and dying. It’s always been something that I’ve always had an interest in. I actually took an elective at the University of Western Ontario at the time at King’s College, which is one of the colleges that’s associated with the university on death and dying because I was interested.
I only got three electives in undergrad and one of them was on death and dying. It’s not ironic or unpredicted that I would end up working in palliative care, but unbeknownst to me at the time. I learned an incredible amount in that course, and I’m so grateful that I had the opportunity to take it. But as far as in my nursing education, there was nothing. And so when I had my first death floating to the neuro ICU, when I was in Texas as a new grad, it was incredibly traumatizing and very overwhelming.
And so that was one of the things when I was approached to teach the elective course at Queens, that I’m a part of, it’s a theory and clinical course. And so that’s one of the things that students who sign up to take the course in the summer term are often really eager to have exposure to, is patients who are dying and aftercare of a body and the things that are hard to predict and hard to fit into a clinical rotation.
But when they do happen, the students feel so grateful to have the support of being a student and being able to go through that process, not on your own with all your other patients that you have to see, but really being able to focus on the emotional and the physical and the psychological aspects of caring for somebody who’s dying, or who has died and their family as well.
I think it’s something that we need to do better and I feel very privileged and very lucky and honored. And feel there’s a lot of pressure on me to keep going with the course for the small number of students that get to experience that and who get to take that with them into their nursing career. Because I think we do a disservice to our healthcare providers and professionals who are learning, by not talking about death and dying because no matter where you work. And I say this to my students, no matter where you work, whether it’s obstetrics, or an outpatient clinic, or the ER, you are going to experience or care for somebody who’s dying. And being able to be comfortable as comfortable as you can be in that situation, is super important and super helpful for everybody.
I think I have a similar experience as Valerie in my nursing schooling [inaudible] dying was not something that was taught probably, or really addressed in any formal way, unfortunately. But we all experienced it very soon in our nursing careers and… Is my audio okay?
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Okay, well, hopefully, that all sorts itself out and maybe in a minute or so we can try again. But Valerie, the course you were talking about sounds so incredibly essential. And even aside from caring for patients or people who are experiencing death and dying, I imagine that grief in and of itself is something that’s inevitably going to come up in the work.
So to be able to touch on all different parts of death, dying, and grief and just so students can be prepared or at least have these conversations a little bit before they enter the field, I think sounds really important. That’s amazing you’re doing that work.
And I think too, we’re all going to die. Sorry to everybody who’s participating, if that’s news to you, but we’re all going to die ourselves. And we’re all going to experience the death of people that we care about. As a society, we do an awful job of discussing and being open about the conversation around death and dying, which is one of the reasons I’m so grateful to be a part of Dying with Dignity, because you guys do such a wonderful job of increasing grief and death and dying literacy, and that’s so important.
And so I think even if within a professional’s scope, someone doesn’t have the experience of caring for somebody very near the end of life if they work in a clinic or something. Regardless, you are still going to as a person, as a human being experience death and dying in your own life. And having some understanding of that and some ability to process those feelings, or to understand even the physiology and what is happening to the body when death is happening that knowledge is so important in helping to alleviate the anxiety that many adults have around the concept of death and dying.
And I often say to my students and my patients and families, especially that just because you recognize that something’s happening and you acknowledge that what’s happening is indicative that someone is dying, doesn’t mean that you’re okay that that’s happening. But it means that you can acknowledge that this is what’s happening and move past the, “Oh my gosh, what’s happening. I don’t know if this is normal, should this be happening to, man this is happening. That sucks.” You know what? I’m just going to hold their hand and I’m going to just tell this person how much I care about them and let them know that I’m here with them.
It takes away the anxiety and the unknown aspect of it and allows you to just be present with that individual. And I think that in itself is a gift to people to be able to be present and not to be so overwhelmed by the idea of death and dying.
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Can you guys hear me?
Sorry. I had to switch to my phone.
That’s okay. Thank you for quick thinking.
I’m at a hospital you’d think that would have great connection, but apparently not. Anyway, sorry about that everyone. Did I bud into just the middle of a conversation?
The timing couldn’t have been better, honestly, that was perfect.
I think too, I was just going to say about death and dying and experience I think it’s something that we’re still learning more about in the healthcare community. I think we have a really good understanding that cancer, what cancer means. If you have a palliative diagnosis with cancer, what that end of life might look like. But I think we don’t do a very good job of what that looks like in chronic disease, heart failure, lung disease, even some neurological illnesses, which also lead to death.
And I think that’s for us in the community, but also in the healthcare community. I work with a lot of community nurses who have varying levels of experience and some totally get it. And I’ve been working in the community a long time and some aren’t expecting the patients to die who have heart disease. They’re expecting patients to die if they have cancer, but not if they have heart disease and what that looks like. And I think for all of us it’s reframing and understanding that we all die and that we’re all not going to die on a clear trajectory. That’s been my experience.
I think too, to add to that, Elizabeth, the idea of healthcare itself not being a failure when somebody dies, that there are choices that people can make in regards to ongoing treatment, to changing goals of care. And I think that medical assistance in dying being legalized has really had an impact on that and helped the lay public to understand that just because we can do something doesn’t mean we should, and we should really be coming back to the patient’s goals and values in life and allowing them to make that decision.
And I think that’s something in healthcare we have a lot of learning to do. And I think that’s one of the strengths of coming to palliative care from a nursing background as a nurse practitioner, is that death and dying, I feel even though we didn’t explicitly learn about it in school, we talked about things like you can have health in the setting of illness and what does that look like? Being healthy, even if you have a diagnosis.
And that’s a very to me nursing approach to things that we’re not always trying to fix something, we’re trying to get somebody to a state where they’re living their best life at the point where they’re at. And so I think medical assistance in dying has allowed the public to view that as one of the choices, but there are other choices. It’s not treat til the end and ICU and all kinds of heroic interventions, but that we can make a decision about what the end of our life is going to look like even prior to that. And that comes from an understanding and an ability to discuss end of life.
Yeah, such a patient centered approach and all of that, which is so incredibly important. On that note that actually does tie into the next question really well. Specifically it’s about MAID. Under the federal assisted dying law nurse practitioners as we’ve discussed, are able to provide MAID and assess for MAID eligibility. Can you tell us what that looks like for nurse practitioners in Ontario, Valerie, and in BC Elizabeth?
Here in BC, since the beginning of legalization of medical assistance in dying, nurse practitioners have been involved as assessors and providers. In the legislation it specifically outlines a physician or nurse practitioner provides an assessment and one of them is the provider, so actually administers the medication or is there when someone takes the oral medications.
I believe in health authorities there are some slight nuances in terms of if you are a health authority employee, I believe there’s one health authority that for a little while wasn’t allowing nurse practitioners to assess their own patients. And there’s some nuances, but in general nurse practitioners can be assessors and providers and have been since 2017. I think the last federal report that came out said there’s about 7% of providers are nurse practitioners and that’s across Canada. They may be slightly higher in BC, but I don’t have that number.
In Ontario it’s sort of similar. It really depends on where a nurse practitioner works, depends on how much they may be involved in MAID assessment and provision. I work for home and community care services and in Ontario right now, I think there are only two of the 14 that allow nurse practitioners to provide medical assistance in dying. We are allowed to assess, I think that 1.1 of the 14 was not allowing nurse practitioners under their employment to do either, but I think that’s been rectified.
And we are in the slow arduous process of getting the policies and procedures in place for those of us who do work for home and community care support services to be able to provide. It’s bureaucracy time further bureaucracy, but nurse practitioners who don’t work for home and community care. There are 70 nurse practitioners like myself who work for home and community care doing palliative care.
It does put a limit on those nurse practitioners who are probably more likely to participate in MAID. But there are nurse practitioners who do primary care and work in other settings who practice medical assistance in dying as well. Now, whether that’s done under their employment depends on the setting they work in, but if they don’t do it within their employment, they’re actually doing it for free.
There is no payment mechanism in place for nurse practitioners outside of their employment to bill like physicians do for medical assistance in dying, either assessment or provision or travel related to assessments. That’s definitely put a hamper on how many nurse practitioners are willing to provide MAID outside of their employed hours and responsibilities.
There have been a couple of instances where practice has been withheld as far as nurse practitioners engaging in further MAID work in order to try to for the governments to make some steps towards payment mechanisms and a couple of local agreements have come to fruition out of that, but nothing across the province that I would think increase the capacity of brand piece to work in MAID.
The latest stats that came out for Ontario, there were 48 nurse practitioners who have provided MAID at some point over the five years since legalization. And last month was the first month that we had a new NP so it went from 47 to 48 NPs in quite some time, just for that reason that nurse practitioners are not being paid to do this outside of their employment.
I think in the other provinces, there are some similar concerns about payment mechanisms outside of employment. I’m not sure whether there’s as much employer hampering of work in MAID as there is in Ontario and from a provincial healthcare perspective. In Quebec, nurse practitioners are not allowed to provide medical assistance in dying.
And I just learned the other day that the only other jurisdiction in the world that allows NPs is going to be New Mexico. They’ve just recently passed their assisted dying laws. And apparently they’re going to be including nurse practitioners and perhaps the province of Victoria State in Australia maybe as well. In that front nurse practitioners are cutting edge in Canada, so it’s interesting the variation.
Excuse me, you touched upon some of the challenges that nurse practitioners who are also MAID providers and assessors are facing. But if you have any more that you feel you’d like to share, but also what you find most fulfilling. We’d also love to hear about that.
I can speak a little bit more to some of the challenges first. Like Valerie said, compensation can be a challenge everywhere and I think that’s being negotiated and worked on everywhere, and it becomes an administrative issue. But I think NPs experiences the same challenges that our physician colleagues do as well in the sense that there’s still just a limited number of assessors and providers. Physicians or nurse practitioners who are able to fit this into their already day to day or are wanting to participate.
I think I would say surprisingly, there’s still a limit on how many physicians and nurse practitioners are participating in this work. And I’d say one of the challenges is I can speak for myself that there has been some resistance from colleagues, from healthcare colleagues at times as well. A misunderstanding of what the MAID criteria is, what the eligibility is, feeling maybe that someone doesn’t meet criteria when I feel that they do.
And so some challenges just in collegiality within healthcare colleagues. I think that that’s some of the biggest issues that we’re still facing. Do you have any more challenges? Because there’s lots of fulfilling things, so I’ll speak about that separately.
I just want to add just the idea of not being necessarily a nurse practitioner specific, but just in relation to working within palliative care, and sometimes seeing dichotomy between medical assistance in dying and palliative care. And I feel that my role is very appropriate in that I can provide both palliative care and assessments for medical assistance in dying for my patients.
And I’m able to come to them with both of those areas of expertise and allow them to make a decision that’s best for them, but being able in one person able to support them in whichever choice they make. I often say to them, you’re stuck with me until you die, whether you die from MAID or you die naturally, and I will support you however I can until then.
But I think that has been a pushback for sure in the Kingston area where I work in the understanding of what is palliative care and should someone with hospice palliative care in their professional title be providing medical assistance in dying assessments and what does that really mean? We’re still moving through that and working on an understanding of what does palliative care mean. Are these two completely different choices? Are they on a spectrum? What does this mean for our patients? What does this mean for the specialty of palliative care? Just some of the roadblocks or hurdles that we’ve had to overcome or trying to overcome in relation to MAID.
And I think that goes for unfortunately across Canada, is that tension at times between palliative care and MAID which I see very clearly as a spectrum, as many people get excellent palliative care and still choose to have an assisted death. And that is not a failure of palliative care. Many of the patients that I provide for are indeed receiving incredible palliative care symptom management, social supports, sometimes that’s in a physical location, like in a hospice or in a palliative care unit in the hospital.
And they are not in my mind separate, they’re very much the same. I think that again, education and helping all of us to understand going back to we cannot always fix everything in medicine. There’s many times that we can’t, and this is a very patient centered patient driven choice.
And so respecting that choice and in that respect just easing into what is most fulfilling about this role is it’s the most patient centered care I’ve ever provided. And it’s some of the most peaceful deaths and end of life that I’ve ever witnessed or ever been a part of. It’s driven by the patient the whole time. It’s beautiful to see families. At times sometimes there aren’t families, but families that are there supporting a patient to the end and really choreographing that end of life for themselves and choosing when the right time for them is to leave this world.
And it’s a beautiful part of my job and it’s incredibly fulfilling. I’ve also had the privilege of providing for some of my own patients, so my own primary care patients. I’ve had a few patients get excited when they meet me and that they soon learn that I also provide MAID and they say, “Oh, that’s great I don’t have to go to someone else.”
And I’ve been able to provide for some of my own patients, but typically for myself, I’m actually coming in as a bit of a consultant. I’m going to see patients that are not my own, meaning I haven’t met them before. I’m chart reviewing and getting to know them, finding their history and then meeting them usually for the first time when I do their assessment. But it’s a really beautiful thing when I actually get to assess and provide for one of my own patients.
And I’ll just continue on in that thread that the privilege of being able to walk with somebody and the choice that they’re making and support them, and no matter what that choice is and know that I’m going to be with that person providing comfort right until the end of their life is still very fulfilling as Elizabeth said. And I feel so grateful and blessed that I stumbled into this role in palliative care.
And I feel that my nursing background explicitly has allowed me to see these patients from a holistic perspective and to take into account even simplistic things like the concentration of injectable med that I’m going to be ordering. What is it easiest for the nurse to draw up? Or what’s the volume of the sub queue the medication that we’re injecting?
Little things that because I was a nurse, those things factor into my practice as a nurse practitioner and allow me to make decisions and care. Provide education to families and patients for them to make the decisions about their care with those conscientious things in mind. And I think one of the things that sads me the most about my practice, is that I’m not able to be the person that ends someone’s life when I’ve followed them along and provided that care.
I’ve been at a number of provisions and felt very grateful to be invited by patients, even though I didn’t need to be there. They felt that my presence would be comforting to them, and I am so very honored to have been able to witness incredibly peaceful, calm, memorable, funny moments at the end of somebody’s life. But I do truly feel that being able to provide that myself for my patients will eventually, fingers crossed, be the epitome of my end of life care for my patients.
Thank you for all of that. Okay, the final question before we move into some Q&A is as you might know here at DWDC, we launched a grief literacy campaign earlier this year. And part of that was working to include more discussions on grief in our work in general. As a healthcare provider, do you yourself experience grief? And when you do, if you do, how do you navigate this particularly the death of a patient?
I will share candidly that last week was a really rough week for me. I had three patients die, two with ALS which is an incredibly challenging diagnosis. And I had been with those patients for a number of months, and I found that just the culmination and the number of deaths that I was breathing and helping, trying to help family members to move through was quite overwhelming.
I’ve been finding in COVID that it’s been really challenging to not be able to hug my patients and their families. And now that I’m double backs, I’ve been asking may I hug you? Because I find for myself that that’s a very therapeutic intervention for me and I hope for them and it allows us to have that moment together. I’m just letting go and being vulnerable.
Pre-COVID, I used to attend wakes for my patients whenever I could, that has not been happening. I definitely have missed out on that aspect of it. I used that as a little bit of closure. I would go and say goodbye to the patient and thank you to the family, for everything that they provided for that patient, their loved one at the end of life and allowing them to have the death that they wanted.
I make bereavement calls now, which are still fulfilling and I still feel they make a difference, but I really do miss that in-person meeting up with the family afterwards. And I think in healthcare in general, we don’t do a great job of acknowledging the grief that healthcare workers experience when they lose a patient at the end of life.
And I think that’s one of the things that COVID has shown a light on, is that healthcare workers grieve when they lose patients. And the number of deaths that one must experience in a short period of time as we have in the waves of COVID, has been incredibly overwhelming and has clearly taken a toll on our health care force.
And last week with losing three patients, having three patients die, that was overwhelming for me. And I cannot even imagine what it was like for healthcare workers working in acute care hospitals, having patients die on a daily, if not multiple times a day basis.
For myself, I find I grieve the most when family is struggling or when a patient is struggling at the end of life, because most of my primary care patients are nearing the end of their life. A lot of the grief happens before someone dies. And a lot of my role is guiding the families and the patient in anticipation of what’s to come. I feel patients who come to me requesting medical assistance in dying have done a lot of that work themselves as well.
But I think where I struggle the most is when the family, our patient, has not been able to do that work or just can’t accept the end of life in a lot of ways. And that’s understandable, but those are the hardest. But I would say most of the patients who’ve come to me in respect to MAID, they’ve made a request for MAID because they have come to that acceptance.
Most of them don’t want to die. They lived incredible wonderful lives and they tell me that I’m no longer living the life that I want to live. But they have come to an acceptance. And I think that that’s part of why people say, I don’t know how you can provide MAID or be so involved in end of life. And those are some of the easier end of life experiences that I’ve had, because patients come to me like I said with a level of acceptance and embracing that this is the end and determining what they want that to look like. I don’t carry the grief from those deaths like I do others that are unresolved in the end.
I would totally agree with that Elizabeth. I find the hardest cases are the ones in which patients and families have not come to terms with what’s happening or are in what appears to be denial of what’s happening. And those definitely they sit with me the most, and I think that’s one of the things that I find I can make the biggest difference. And it is over the course of a relationship with a patient and family is helping them to come to terms and accept what’s happening.
And being able to talk openly about death and dying, which is the reality for most patients who choose MAID, or at least choose to be assessed for MAID. They are ready to openly talk about death and dying because of the requests that they’re making. But that definitely makes things a little bit easier at the end of life, as far as not only the acceptance and work that the patient and family have to go through, but also the symptoms that patients experience when patients are fighting to not die and fighting to not accept what is clearly happening to them.
In my experience, they often have the most challenging physical symptoms to manage in addition to their psychological symptoms. Again, in my mind, it comes back to us as a society being better at talking about death and dying as a whole and getting more comfortable with that part of our lives that we will all go through, in an attempt to be able to move through that part of our life a little more smoothly for everybody involved, not just the patient.
Am I allowed to promote a book that I love?
Of course, why not?
Probably a lot of people listening to this may be very familiar with Atul Gawande. And one of his most excellent books is called Being Mortal. And I think I’ve purchased it for my parents, my partner’s parents. Oh, there you go. Valerie has got a copy. And I think that it’s also a great starter for conversations with family members or with friends before we get sick, before we get towards the end of life. These are conversations that we should all be having. There’s lots of other great books, but that’s just one that I can think of that I love.
Thank you. Yeah, if there are any more books that come to mind, feel free to email me and I know folks would really appreciate just some resources are always really helpful. And I just want to say that when you two were both talking throughout that at different points, I got goosebumps. I thought that was a really powerful just sharing of your experiences.
And Elizabeth, the anticipatory grief that you were talking about, I really think that’s something that isn’t talked about enough, and just the anxiety and the weight that that can carry for everyone and anyone. I appreciated everything you both said so much. Okay, were you going to say something Elizabeth, before I go to the?
No, I’m just trying to unmute.
Okay, perfect. The first question-
Its harder on your phone than on your computer.
Yeah, definitely a lot to navigate for sure. One question here, some individuals have observed that many health workers in palliative care and end of life care in general are reluctant to mention MAID as an option when discussing end of life care options. What are your general thoughts on this, or any observations that you’ve seen?
Also been my experience. I think especially initially there’s a lot of hesitance the nursing college came out with different guidelines about what people can and cannot say. And I think there’s a lot of concern from healthcare workers of pressuring someone, I can’t bring it up unless they bring it up. When you have conversations about the end of life, you can bring up all options for someone at the end of life.
It shouldn’t be our patients coming to us, although often it is saying hey it’s all over the news. The legislation just changed this year so to expand the laws. More and more people opportunities like this, where we’re having conversations, Dying with Dignity has done incredible work when it comes to this. As a healthcare community, we have not and we need to do better.
Just by bringing up medical assistance in dying and making sure a patient knows what their options are, does not mean you’re encouraging it. And so again, it’s a comfort level. It’s us all getting comfortable and understanding where resources is if a patient is interested how do you… In BC, we’re so fortunate. We have coordination teams for all different health authorities, where you can just give a patient a number and they will walk them through everything.
But I believe it is our responsibility as healthcare professionals to ensure that everyone knows what their options are. And a lot of that might mean bringing that up, again, these preemptive conversations. You don’t need to have these conversations with somebody when they are at the end of life. You can talk to them about what their advanced directives are. We have lots of conversations about planning for the future, what measures you would want should you be in X situation? And this should be incorporated into those conversations.
I’ll just add that it varies across the country. I know in Newfoundland their nursing college has explicitly said that nurses are not to bring up medical assistance in dying. In Ontario, our college never said that, but it was very clear to point out that you should not be counseling or encouraging a patient to enter into assessments or provision of MAID.
But in nursing counseling means talking about something with somebody, working through answering questions, and that’s different than the criminal law wording of counseling somebody to commit suicide. You’re not encouraging somebody, you’re working through and answering questions. And so one of the things I mentioned when I’m doing teaching on medical assistance in dying, is it behooves every healthcare professional to think about how you’re going to answer a question about medical assistance in dying before you get asked.
Are you a conscientious objector? Do you know where to point a patient to information, if you’re not aware or up to date on the latest information on medical assistance in dying? Are you able and willing to assess for medical assistance in dying as a nurse practitioner within your role, under your employment? Are you able to provide?
There’s a spectrum of involvement in medical assistance in dying, the most being provisioned and assessment of MAID, and the least being a conscientious objector, who knows how to point a patient in the direction for them to get support and information. But we all need to expect as healthcare providers, that we’re going to be asked a question about MAID and know how we’re going to respond beforehand.
Okay, thank you. We have time for one more, maybe two more probably just one, but we’ll see. The next question says, could you please comment on how we could do better for patients wishing to die at home rather than in hospital or in hospice?
We just had a meeting today for nurse practitioners in the community about this. We are struggling greatly with community based supports and that is definitely impacting the ability of Canadians to die at home in Ontario, especially. And I would guess probably across the country, we’re having health human resources shortages and PSW support and nursing support.
And without that the bulk of the work, even without those supports falls to the family. I think really understanding the amount of work and support that it takes to have somebody at home until the end of life is really important. If you have gone through that before being open with your experience with people, friends, and family, neighbors who might be interested in understanding what that will take.
And I think honestly getting more funding into home and community care in order to have the health human resources in the community to support Canadians to die, where they want to die. The opening and funding of long term care beds is not really what Canadians want. They want to be able to stay at home for as long as possible. And that is not a reality right now with the level of human resource support that we have in the community, unfortunately.
And I’ll just add always important to reach out to your MPs and MLAs, which I now know what those things mean, being a Canadian. But with unfortunately what happened with COVID and how hard hit long term care homes were for myself working with senior population. It’s not just long term care homes, it’s also supporting people at home.
In that same regard, we need to fight as a society, we need to fight as a healthcare community to provide patients with the supports that they truly need to die at home. Because like Valerie was saying in most places, we actually don’t have that. My patients are incredibly fortunate through the home beef program that they have 24/7 access to a physician or a nurse practitioner. We can go into the home and provide symptom management if we need to.
And we work closely with the community health centers, but even that isn’t always successful, or we don’t always give people what they need and that’s in an urban setting in Vancouver. There’s just so much more work to be done. And unfortunately, a lot of that is resources, it’s bodies, it’s funding, it’s making sure that those higher up making the decisions understand truly what it takes to keep someone at home.
And again, the trajectory of a cancer patient is very different. The palliative care benefits, which is what we have here in BC is modeled after a six month trajectory. That isn’t always the case for someone with chronic disease. They may be here another week or two or maybe two years. We don’t know what that looks like. And so we need to be able to support them for as long as they’re here.
Death is not that predictable and we don’t do a great job of predicting it, so funding right to the politicians demand funding. In BC, we have an incredible seniors’ advocate, Isabel McKenzie, who is doing a lot of this great work, but they could use as much support as they can get.
We still have a few minutes, could I ask one more question if either of you are okay with this? Okay. Do you have any practical tips for nursing students with an interest in palliative care and/or MAID?
Try to get a clinical placement somewhere in palliative care or community. I think that’s one of the things I love about the course that I get to teach is a lot of my placements are with my colleagues out in the community. And I think that is an eye opener in itself. I don’t know about you Elizabeth, but in my training I had zero community placements. And so the first time I ever went out to see somebody in their home was in this role.
And I’m just thinking like, this is so different than seeing somebody in the hospital, where everybody looks the same, they’re all in hospital gowns, it’s your domain. The patient is there to do what you’re going to do to them. Either it’s a different mindset, whereas when you’re walking into a patient’s home you get to know them intimately and see where they live the bulk of their life. And I think that in itself lends a whole lot to a holistic approach to nursing.
Even if you’re not doing palliative care in the community, it lets you see who the person is when they’re outside of the hospital. And to help to think about some of the things that you want to know about your patients when they are in hospital. I would definitely even on an acute care floor look for opportunities for where you can apply a palliative approach to care.
Good symptom management, making sure that you’re addressing patients from a holistic perspective. If there are patients who are at the end of life, asking for those assignments and asking to be part of the after death care of patients if there are opportunities. And just get a bit more exposure to trajectory that Elizabeth was talking about when it’s a little bit more predictable
And I’ll just mention too, I don’t know. I can’t speak to anywhere except my little world of Vancouver and the lower mainland, but nurses attend each provision with me. I go out and I always have a nurse with me as support nurse who inserts an IV for me, if it’s an IV administered provision, which 99% of them are. And who’s also an incredible support for the family and for myself at the provision.
So depending on where you are here in this area, again, we have a coordination team and that’s who hires the nurses to be the support nurses. And I’m sure they exist in most places in some capacity. Figuring out what that might look like in your area, because most providers like myself attend with a nurse. There’s lots of opportunity there depending on where you are.
Okay, well, looks like it’s our time, but thank you so much to everyone who joined us today, everyone who’s joining us watching the recording in the future. And thank you again so, so much to the two of you. I could definitely keep going on with this conversation. It’s been really [crosstalk].
We could clearly keep going on as well.
It’s been yes. So much really new information for me and I’m so grateful for your experiences and your openness in having these conversations. And so thank you again, so, so much.