May 30, 2023
Palliative care: Quiz yourself
Webinars | January 18, 2022
On January 18, Nurse Practitioner Valerie Cooper asked participants a series of questions about palliative care, sparking discussion and improving understanding.
Valerie Cooper is 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.
I’m thrilled to welcome you today to the 12th session of our online conference, Reflections On Death and Dying. The first month of our webinar was such a success, and you can find the recordings to some of those sessions posted on our website and Kelsey or Nicole will post the link in the chat.
We continue to meet throughout January, and we’ll be presenting a range of topics related to death and dying. So if you haven’t done so already and are interested, you can find all the sessions and registration links on our website which will also be put in the chat momentarily. And the next session is palliative care with Dr. BJ Miller. It’s going to be fantastic, so I can bridge you to come check that out.
So before I welcome today’s presenter, I’d like to go over some housekeeping items. Everyone on the call is muted. However, we’ll have opportunities to submit questions throughout the session. So to do so, please type in your question in the Q&A bar at the bottom of your screen, and we can read it out for you at the end.
Please make sure to keep your question as concise and clear as possible, and we might not get to everyone, unfortunately. So if you do have any questions left that are outstanding, feel free to contact us email@example.com and we’ll follow up with you individually. We’ll also be sending a post webinar survey that will pop-up on your screen after the webinar.
It will give you the opportunity to share your feedback and this session is being recorded, so you’ll be able to watch it again on our website later. So no worries about taking notes for this one. Now to introduce you to today’s speaker Valerie Cooper is a Hospice Palliative Care Nurse Practitioner with Home and Community Care Support Services South East.
She works in a shared care model with patients existing primary care providers to support them 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’s also contributed to continuing education course for nurse practitioners on palliative care through the University of Toronto. Valerie is a member of DWDC’s Clinician Advisory Council, as well as many Communities of Practice related to both Palliative, as well as End-of-Life Care and Medical Assistance in Dying. She recently became the co-chair of the NPAO Palliative and End of Life Care Community of Practice. So welcome back Valerie, it’s always so nice to have you and the floor will now be yours.
Thank you so much. I’m so excited to do this talk. It’s different than anyone that I’ve done before, and I’m really looking forward to the interaction that we’re going to have with the participants here. So as you can maybe glean from the title, palliative care quiz yourself, we’re going to be asking the participants some questions about palliative care, and hopefully we’ll see from the beginning your comfort level and understanding of palliative care will grow over the course of this discussion.
So Nicole is going to behind the scenes be launching the polling questions. So I think we’ll start with the first one which is just a general overview of how you feel your current understanding of palliative care is, is it excellent, good, fair, or poor? So every time we have a polling question up, we’ll wait a few seconds till we get a number of participants and then Nicole will go ahead and close it when she feels that a sufficient number have answered, and we’ll have a little discussion about what the question entails.
So I’m hoping that if we have goods and pores at the beginning, that we’ll have excellence as we move forward. So there’s some room for improvement. We only a few that have I feel their understanding is excellent, so great. Hopefully those fair and goods will move up to excellent as we move forward. Perfect. Okay, so I think we’ll start right off of the second question, and then we can sort of enter into the discussion because I don’t want to spoil.
My worry here is that I’m going to spoil some of the answers to the quiz questions as we move forward as I, as I talk about my love and dedication to palliative care. So Nicole, if you want to launch that. So you must be in hospital to receive palliative care, true or false? This is a big misnomer that you need to be in a certain place to receive palliative care. Good. So that is correct. That is false. You don’t have to be in hospital to receive palliative care.
So palliative care can be provided in a variety of settings and the way as palliative care practitioners, we hope people understand palliative care is that it’s not just one or two interventions, it’s an approach to care. So you might hear the terminology of palliative approach to care versus palliative care or even worse, a patient is palliative or a palliative floor, right?
So really, palliative care is an approach to care that takes into consideration the person and their family, whomever they deem that to be as the central focus of the care. And when I’m teaching my undergrad students, I often like to clarify that really, palliative care is how all medicine should be provided, that we’re looking at the patient as a whole person and all aspects of that individual and how their family fits into that picture as well.
And so you don’t need to be in one place to receive palliative care or a palliative approach to care. It really should be we like to say from the diagnosis of a life-limiting illness and even some definitions of palliative care speak to not even just life-limiting diagnoses, but whenever an individual has symptoms. So from any medical concern whether that be a chronic disease that will continue on or something more acute that can be cured and the person can move past that.
So the other way of thinking about palliative care is really symptom management. And in some places, the name or the title of a service or clinic has been changed from palliative care to symptom management or something like that, delineating the idea that it’s meant to address symptoms. And I think there’s some folks that work in palliative care that feel that that’s appropriate to change the name because there’s a stigma attached to the terminology palliative which palliative the term comes from the word pall or cloak.
And you can think of it in other words like pallbearer that where pallbearer carries a coffin or a casket that’s covered, draped in something to cover that casket. And so that’s the idea of pall is a covering. So we’re covering the symptoms. We’re not necessarily fixing the underlying reason why somebody’s having symptoms, but we’re covering it. And so that terminology of palliative care is often associated with death and dying.
And for a lot of people in our society, those are things that they don’t want to think about or talk about. And so when they hear the terminology palliative care, they think, “Oh my gosh, I must be dying.” And we know that palliative care benefits people not only who are dying, but also who have any type of symptom burden. So we’ll see palliative care delivered in clinic settings, in the community like I do, at people’s homes in hospices, but really, palliative care should be delivered by your primary care provider in their clinic when you’re going in to do a follow up for your asthma or to follow up after surgery to make sure that we’re managing your symptoms.
So it’s really an approach to care and not just a type of care that’s given in a certain setting. Okay. Nicole, let’s launch question number three. So this question is about who has access to palliative care. So if you think about what I just said that palliative care is an approach and that it can be really given in any location and should be given by everybody. What percentage of Canadians received publicly funded home care, palliative home care in their last year of life?
So those people who wanted to remain at home, how many of them received home care specifically focused on palliative care in their last year of life? 7%, 15%, 25% or 30%? Okay. So the answer is 15% and that is always to me a shockingly low percentage of people. We know that the vast majority upwards of 70% of Canadians identify that they want to die at home and remain at home as long as possible. Ironically, about 70% of Canadians end up dying in hospital and part of that is because they don’t receive the care where they want to receive it which is at home.
And so you can see that, only 15% of Canadians received publicly funded palliative home care in their last year of life. And so I think that help understanding what percentage of people have access to palliative care at home helps us to understand why the numbers are as high as they are that people are dying in hospital. And I think we need to do a better job from a government perspective, from a healthcare monetary spending perspective in identifying and highlighting the fact that people want to die at home and we’re clearly not doing a good job and supporting them to do that.
So we need to not only be able to ensure that we have nurses and PSWs and nurse practitioners and physicians who are able and willing to see people at home which is where they want to be, but also be able to have conversations about what we want the end of our lives to look like. And so I think that’s one of the wonderful things about Dying With Dignity Canada’s conference is that they’ve increased the opportunity for us to talk about death and dying within our society and become more comfortable with this concept.
And therefore, to be able to have these conversations and identify that we want to be at home at the end of life and what do we need to do within our society to enable that to happen? So if 15% of people had access to palliative home care in their last year of life, but many people do die at home. Then who fills that void? Family, right? There are many, many, many unpaid caregivers in existence that help to support their loved ones whether that’s family or friends or neighbors to remain at home if that’s their wish.
And although that’s lovely and wonderful that they’re able to do that and provide that support, we need to make sure that they themselves have support and that we’re not asking them to do things that are well beyond their comfort level that delve into the idea of nursing care and the scope of practice of nursing because people deserve to be with their loved ones as their loved ones and not just as their caregivers. And I see that quite a bit in my practice that loved ones will say, “Well, I’ll do whatever I need to in order to help keep my loved that home because that’s where they want to be and that’s where I want them to be.”
But that may drag on and become quite burdensome as the length of time and the symptoms and the physical care becomes more difficult. And so I think if there’s one thing that I wish we could change as a Canadian society is to increase our awareness and our focus on home care and helping people to remain at home and receive the type of care that they want at home. Okay, let’s go to our next question.
I’m looking to the side because that’s where the questions are stored for me. So according to the Canadian Institute for Health Information, most hospices require patients to have a life expectancy of _____ number of months or less to be admitted. So less than two months of life, three months of life, six months of life or 12 months of life. And this is not only applicable to hospices in Canada, but also to hospice care in the United States and to other hospices in other jurisdictions as well.
So let’s see what everybody answered. Again, pretty close. So the answer is three months of life or less, often hospices will also include that a patient must be a PPS or a Palliative Performance Scale level of 30% or less and 30%. So the palliative performance scale is a tool that healthcare providers use to communicate a level of functioning for a patient. And it looks at different aspects of that individual. And so 30% for most healthcare providers would be understood as someone who’s bedbound and no longer up and mobile.
So the reason hospices have specific criteria area that a patient needs to meet as far as life expectancy and functional status is because we don’t have very many hospice beds and we definitely don’t have enough to care for all of the people who likely would benefit from being cared for in that type of setting. And so in order to for lack of a better word, restrict the number of patients who are eligible for those beds, it needs to be for patients who are really at the end of life.
Although we definitely recognize that the care that an individual would get in a hospice or the care that an individual gets in receiving hospice care at home in the United States would likely be beneficial for them many months before their last three months of life. And so again, it comes back to the idea of funding and limited resources and the fact that we have to move somebody at the end of their life when they are bed bound. And understandably, it’s not an exact science, people ask me all the time how much longer does so and so have, or what kind of timeline are we talking here?
I can give my best guess, but it’s not an exact science. So we may think somebody has less than three months of life left to live. We go through all the work of moving them to the hospice and they die in a couple of days. That’s a lot of trauma and a lot of stress for that patient and that family to go through very close to the end of life. And so it would be lovely if we were able to have enough beds and enough resources to support people whenever they needed to be admitted to hospice for whatever reason.
And in my experience, patients choose to go to hospice when things get too bad and that’s different for everybody. I often say that as a palliative care provider, I’m really good at managing physical symptoms and even being able to help address some of the existential psychological symptoms of coming to the end of one’s life and facing one’s own mortality. But what I can’t do and what much of home care can’t do is be there 24 hours a day, seven days a week to provide that physical, personal care.
And that often becomes the breaking point for patients and families when they require moving into a more institutional setting. And it’s sad to think that that’s really only an option for people in the last three months of life. The care that people receive in hospice is lovely and wonderful and extremely holistic in its approach. I just wish that we had more access for more people in the area where I work which is around Kingston.
In Ontario, we don’t have an inpatient hospice. We have some very small two, three bed hospices, and we just had a 10 bed hospice open in Belleville which is about 45 minutes away. But in Kingston proper, we don’t have an inpatient hospice. So the only option we have here is a palliative care unit in a Catholic hospital. So it’s really lack of the draw whether you live in an area that has access to hospice care or not. So more hospices and more beds and more funding would definitely be a good thing, especially as people age and we recognize how important that type of care is for people.
Oh, I will just mention in addition to talking about hospice specifically that as we alluded to and discussing the first question about do you need to be in a hospital to access palliative care, we can still provide palliative care and that approach to care at home for people in long-term care homes. I think that’s come out quite a bit with COVID, and the idea that long-term care homes are basically palliative care wards. People who go into long-term care homes have a life expectancy on average of about 18 months.
And so those 18 months should be focused on quality of life and symptom management and getting the most for that individual that they can out of their life. And so we need to be able to provide that type of care in a variety of settings if we don’t have enough hospice beds. So I think that is a takeaway as well that palliative care should be expected to be provided wherever there are individuals who have symptom management concerns.
All right, let’s launch the fifth question. Palliative care should be started in the final week or two of a person’s life. True or false? Hopefully from what I’ve our already said, the answer to this will be quite obvious. Good. So the vast majority of people recognize that this is false. So I mentioned at the beginning that ideally, palliative care should be introduced whether it’s titled palliative care or not is irrelevant, but the idea of symptom management should be introduced at the time of diagnosis of a life limiting illness.
So that means when someone is diagnosed with congestive heart failure or when someone is given a diagnosis of chronic obstructive pulmonary disorder. So there are lots of diseases that we don’t traditionally think of as being one, that might require palliative care. But we have come to recognize within the field of palliative care, that the approach that has traditionally been associated with malignancies or cancer diagnoses are also extremely beneficial for management of symptoms and organ diseases.
So those ones I’ve just mentioned CHF and COPD and chronic renal failure. And so if we introduce the idea that palliative care can be administered at the same time, so not one treatment and then treatment stops and then palliative care begins, but rather, we’re administering both disease directed or diagnosis directed treatment along with symptom directed treatment. Then we know that people have a better quality of life and manage their diagnosis much better.
It also allows us to have conversations about what this diagnosis means across the trajectory of that illness. So if someone is given a diagnosis that we as a healthcare team know is going to be life limiting and is going to impact how long this individual is going to live, and the quality of that life, we have a duty to discuss that with the patient. And that doesn’t mean being blunt and saying, “Well, this is a death sentence, and you’re going to die from this.”
But that we understand that patients do better and families do better when they know what to expect, right? So that there are aware that for example, in CHF, someone might have what we call exacerbation. So worsening of their symptoms that might result in hospitalization. And so we have some tools that include graphs, looking at what that disease looked like. So CHF might look like a functional existence that’s fairly high. And then someone has an exacerbation and their functional status diminishes, but then they get better and it comes back up, but it never got back up to the level that it was before the hospitalization.
And then they continue living and then they have another exacerbation and they get sicker and they’re not as functionally well, and they do get a bit better, but not as well as they were before they went into hospital. And that can continue for many, many exacerbations or many dips on that graph. And we can see over a length of time along the bottom, that person’s function is declining with every exacerbation. So helping somebody to see that from the time of diagnosis helps them to see that every time something happens, there’s an opportunity for a discussion about goals of care, a discussion about what brings quality to your life.
And then understanding that at some point, one of those dips may be the last and that empowers patients to make decisions and to have conversations and to be open about their wishes with their family. And we know that that is helpful for patients and families alike and the healthcare team. I think it’s important to know that traditionally, palliative care was often equivalent in people’s minds to end of life care.
And although palliative care encompasses end of life care, it is not by any means the only thing that we do. So when I tell people that I work in palliative care, the reaction is often, “Oh, so you’re always dealing with people who are dying?” Well, no, I’m dealing of people who are living as best as they can for as long as they can. And then eventually, I help them to be as comfortable as possible and to die in the place that they want to.
But the overarching belief is that palliative care equals end of life care. And so it comes back to what I was saying before about changing the name of palliative care. Is that something that we should focus on to make people more comfortable with the idea of symptom management, but the reality is if we change the name, then people are just going to become eventually uncomfortable with symptom management because we’re not addressing what the real concern is which is our reluctance to talk about death and dying.
So I think understanding that palliative care starts ideally from the time of diagnosis and that the focus as someone’s diagnosis progresses whether that’s a cancer diagnosis or an end organ failure diagnosis is that the focus can be more on disease-modifying treatment at one point, and at other points, maybe more on symptom management. So a good example is a cancer patient.
So a patient who’s undergoing active cancer treatment, chemotherapy, radiation, surgery, the focus very much is going to be on trying to deal with that cancer, trying to either cure the cancer or put the cancer into remission or shrink the tumor in order to access further treatment. Then we sometimes hear of patients who have to stop their treatment because the side effects are so overwhelming that they’re no longer able to cold and they need to stop their chemotherapy or radiation.
And so then the focus becomes more on palliative care, on symptom management. So we’re not doing anything to deal with the cancer per se, right now we’re focusing on making you feel better and dealing with the symptoms of the cancer and the symptoms of the cancer treatment. Then often we can get people back to a performance status or a functional status where they’re able to undergo more disease modifying treatment. So the focus goes back and forth over the course of the individual’s disease journey.
And so it’s not one or the other, it’s together, whatever the focus is of the treatment we work between the two. And that’s why it’s so to have a palliative care clinic or a palliative care specialist involved in those patients who are undergoing cancer treatment. And I would hear to say that it is equally as important to have a palliative care specialist when we’re dealing with patients who have an organ failure like congestive heart failure, or COPD or chronic renal failure because again, those patients, their biggest concern may be the symptoms of the disease rather than the progression of the disease itself.
So I think understanding that palliative care has a place along the disease trajectory is really important for people to understand. It’s not just for end of life. Okay, let’s do question six. I’m going to look specifically more about the nuances of palliative care. So the only thing that we do in palliative care is control your physical pain. True or false? Makes my job relatively easy, if that was the case.
Good. Again, so the vast majority of you got the answer right, that is false. Palliative care has a big focus on physical pain because that tends to be the thing that most human beings are the most scared of. When you talk to somebody about what … After you got your diagnosis, what were you most afraid of? And they’ll often say being in pain because being in pain is not pleasant. And we definitely do a lot of pain control, I think I write more opioid prescriptions than I do any other type of prescription because people need to have their pain controlled in a reasonable way.
But I think that’s just a very small part of the work that I do and the work that my other palliative care colleagues do. So a lot of it is reassurance that if you have pain, that we are going to be able to deal with that pain is a relatively easy symptom to manage. And I will often say to people, “You haven’t had pain all through your illness journey. And so just because you are coming to the end of that journey, or you are actively dying does not mean that you’re going to have pain. Dying itself, dying intrinsically is not painful. Dying is a process that your body goes through just like giving birth, that it goes through whether you give it the direction to or not. And that process is not a painful process.”
What it entails is a lessening of pretty much everything. So less functional ability, less wakefulness, less appetite. So an individual becomes sleepier, they do less, they take in less, they participate in life less to the point where they’re sleeping all of the time. They’re not eating, they’re not drinking, they’re not producing urine, they’re not producing bowel movements because their body is shutting down. That in itself is not painful.
And so I think that is a huge misconception for people that dying itself is a painful process. And it is not, if you haven’t had pain through your diagnosis, whatever that might be, or you’ve had relatively easy to manage pain, your pain is not going to spike just because you were in the last few days of your life and patients and families are very reassured to know that. If you do have pain, there are lots of medications and lots of interventions that I have in my tool bag that I can institute to address that pain.
Other physical symptoms that palliative care manages, a big one is breathlessness. And we also use opioid medications like morphine or hydromorphone to address breathlessness. And that’s because again, we’re covering the symptom, right? We’re appalling the symptom and breathlessness can be caused by a multitude of things. Many of which I can’t address at home for a patient nor does the patient want me to, but what I can do is decrease the sensation or the experience of that breathlessness for that patient.
And the way we do that is with opioid pain medications because they work centrally in someone’s brain to decrease that sensation of breathlessness or that discomfort that one gets when they’re not able to breathe for whatever reason. So again, prescribing a lot of opioids for pain and breathlessness. We also manage things like nausea, we manage things like sleep, improving sleep is super important, helping to get the most out of an individual’s appetite and desire to eat and enjoyment of eating, bowels, bladder habits, all of those physical things are part of palliative care.
We also spend an extreme amount of time dealing with the psychological and mental side of facing one’s own mortality. So we’re really good in palliative care at having challenging conversations that many other aspects of medicine shy away from and become uncomfortable having. So we’ll talk about things like advanced care planning.
We’ll talk about things like do not resuscitate. We’ll talk about funeral planning, and have you thought about which funeral homes you might have or bringing up medical assistance in dying and having those types of conversations and helping patients to get to that point where they’re able to have those conversations. And I think in my experience in palliative care which is going on over eight years now is that the patients who have more psychological angst and anxiety around their own mortality and coming to terms with that often have the most challenging physical symptoms to manage.
And so in palliative care, we call that total pain. So the total pain is a concept that was developed by the pioneer of palliative care Dame Cicely Saunders who was a nurse social worker and physician in the UK. And she founded a hospice there called St. Christopher’s Hospice. And she basically developed this idea of total pain, but pain is not just a physical concept, but it is also a psychological concept, an emotional concept, a financial concept that there are so many aspects to an individual themselves that play into the pain that that person is experiencing.
And so I still am shocked when I bring up the idea to total pain with other healthcare professionals in different specialties and they have never heard of it. And to me, it’s the most normal, obvious thing that, of course, an individual’s experience whether that’s pain or dyspnea which is breathlessness or nausea, that is being compounded by all the other stresses that an individual is under whether they’re physical stress, mental, financial, social, all of that is going to compound those symptoms.
And so it behooves us as healthcare professionals to really understand that individual as a holistic person and not just as the diagnosis with the person who’s sitting in front of us. So palliative care is widespread. We deal with everything. The other day, I was calling to find a priest to give my patient who lives very rurally her last rights, and I’m not a religious individual. And I have found myself on the other end of a number of different religious organization’s phones and asking for help. And so we just try to do our best to take care of the individual in whatever way they may need taken care of. So it’s definitely not just pain control.
All right, let’s do question seven. So only palliative care physicians can provide palliative care. I might be a little bit offended if you don’t get this question right. So palliative care physicians are a … Palliative care is a newer specialty when it comes to the Royal College across Canada. And yeah, so you definitely don’t need to be a physician to provide palliative care. But there are many palliative care physicians who specialize.
So they’ve done their medical school and their residency and then they go on to do a focus or a specialty in palliative care. So when we look at palliative care and who can provide palliative care, we think about a triangle. So the vast majority of palliative care is provided along the bottom of the triangle, and that is provided by everybody.
We like to say in palliative care, palliative care is everybody’s responsibility. It’s both a generalist approach as well as a specialist approach. So the vast majority of individuals, their palliative care needs can be managed by primary care provider, a primary care nurse practitioner, community nurses. So people who see lots of different patients with lots of different symptom concerns. Most symptoms can be managed by those broad range of healthcare providers who have a, an understanding of palliative care at a broad general level.
Then the next level up is people who have additional training in palliative care. So the continuing professional development that I’m a part of, the learning essential approaches or the leap courses for healthcare professionals. So that extra level of palliative care training, that next level of patients will be managed by those people who their symptoms are a little bit more complex. They might need to try different interventions.
It’s not just simple everyday palliative care. And then a very small percentage. The top little point of the triangle is where the palliative care specialists come into play. So not very many patients actually require the care of a palliative care specialist which is a good thing because one, because that means that most people’s symptoms are fairly easy to manage. And two, because we don’t have very many of them.
So if everybody at the bottom of the triangle needed to see a palliative care specialist, we’d be even worse off than we are right now with only 15% of Canadians receiving palliative care at home. So within palliative care, we’re recognizing that when someone has symptom issues, we can’t just automatically send them to a palliative care specialist because they are potentially taking care away from somebody who really does need to be seen by that specialist because they’re not able to be managed by the generalists or the next level up like myself.
So we really want to save the palliative care specialist for those people who really need intense interventions like epidural opioids, or methadone or things that are a bit more complex. But I think the other side of that is that we need to empower our primary care providers and our oncologists and our respirologists to have a basic level of understanding of palliative care. And I often will point out to my primary care nurse practitioner colleagues, you’re already doing palliative care.
If you’re prescribing puffers to manage COPD patient’s breathlessness, that’s palliative care, you’re managing their symptoms. You’re not changing the underlying disease, you’re helping them to cope better. So if we call palliative care what it is and identify it when it’s being done, then people think like, “Oh yeah, okay. Well, I’ve been doing palliative care. I’ve been prescribing Tylenol, or I’ve been trying tricyclic antidepressants for diabetic neuropathy, doing different things to help manage and improve my patient’s quality of life.” Well, that’s palliative care, and that definitely doesn’t need to be done by a palliative care specialist.
Okay. Let’s do question eight. Palliative sedation and medical assistance in dying are the same thing. This might be a bit tricky for some people. Palliative sedation is definitely an intervention that is getting more air time since medical assistance in dying was legalized in Canada than it was beforehand, that’s for sure. We’re definitely having more conversations about it, and I find that people either want to have this intervention as an option or absolutely don’t want to be involved in that.
Wow. Okay, good. That’s great. They are definitely not the same thing. And I think there is even some misconceptions outside of the palliative care world that palliative sedation long before medical assistance in dying was legalized was a form of medical assistance in dying. And it isn’t, they’re two different things. So medical assistants in dying is the administration by a nurse practitioner or a physician to a patient at their request that will end their life.
So the goal is to end an individual’s life with the administration of medication. Palliative sedation is the goal is to alleviate suffering and that may result in an individual’s death down the road. But the intervention itself, the goal of that intervention is not to end that person’s life. So when I talk about palliative sedation with patients who I’m assessing for medical assistance in dying in order to ensure that they are educated about all of their choices, we talk about palliative sedation if it’s appropriate in their situation, but I will often explain it that palliative sedation most is often more challenging to meet the eligibility criteria for the medical assistance in dying.
So medical assistance in dying is something you as the patient ask for, you are in control of whether we move ahead with it or not. And you decide whether this is right for you based on the information you have. Palliative sedation is most often comes down to the prescriber making that decision along with more often than not, the person’s substitute decision maker rather than the patient themselves. This situation comes up when an individual’s symptoms whether that’s physical symptoms or psychological symptoms becomes intractable is the terminology we use which means that I’ve done everything I possibly can, I’ve tried every tool in my tool chest.
I’ve reached out to colleagues, we’ve increased and decreased and changed various medications and we cannot get the patient to a point where they are comfortable and they’re no longer suffering. This situation in my career has happened twice. Both times were related to an individual’s psychological and existential suffering, not their physical suffering because as I’ve said before, physical symptoms are relatively easy to manage. It’s the psychological aspect of things that can be really challenging for patients and families and those who are supporting them to address.
And so palliative sedation was instituted in those instances where an individual could not, the anxiety of knowing that they were at the end of life was too much for them. And so we use a medication called Midazolam or a benzodiazepine to put the individual into a coma, or usually it has to be tied, the medication has to be increased enough that the individual is in a coma and therefore likely isn’t able to eat or drink or converse or communicate any longer.
We can only institute this intervention within the last days to weeks of a person’s life. So we know that the individual is very close to their natural death anyway, but the goal is that they get to that end point without suffering. So we have to have tried everything, the patient has to be at the end of their life regardless. And usually, it’s the substitute decision maker because the patient is just not in their right mind and able to make this decision at this point that says, “Yes, palliative sedation makes the most sense.”
And so the individual may continue to be alive, but not involved in their life, not communicating, not being present other than physically for days to short weeks as their body continues to deteriorate and their disease process progresses to the point where they die a natural death. So it wasn’t the palliative sedation that caused their death, it was the underlying disease, but the palliative sedation allowed that individual to be comfortable and not suffering until the end.
So often that’s really reassuring for people to hear that there is an option, that means they won’t be suffering. Conversely, many people will say to me, “That sounds like hell, I would not want to be in this purgatory.” Is their word or an extended period of time, unaware, unable to be a part of life or know my family was present and have them sit vigil over me, that doesn’t sound like something that I would want.
So I think it’s important for people to be aware, again, of their options, but palliative sedation isn’t something that medical assistance in dying where you can say, “Yes, that’s what I want. It’s a process, and it focuses more on the practitioner and their ability to manage that patient specific symptoms than anything else.” Okay. So question number nine. If you’re accessing medical assistance in dying, you can also have palliative care, true or false?
So you’ve chosen medical assistance in dying as your end of life choice. Does that forego your option of receiving palliated palliative care? True or false? True. So you are able to have palliative care and made. And ideally, we want every patient who chooses to have medical assistance in dying to have had the opportunity to receive palliative care. I think the stats that have come out from the two annual reports that we’ve had on medical assistance in dying have shown over, if not close to 85, definitely over 80% of individuals who received medical assistance in dying at least had access to palliative care if not received palliative care.
So we know that lack of access to palliative care is not a reason people choose medical assistance in dying, but rather, they receive both. And I feel very privileged as someone who provides palliative care that I also have the opportunity to do assessments for my own patients and soon, provisions for my own patients for medical assistance in dying because I’m already having difficult conversations with patients. I already know their medical background.
I already know what we’ve tried as a palliative care provider. And so being able to switch hats into a medical assistance in dying assessment is quite easy. And to me, it just may sense rather than involving a stranger in at that time in somebody’s life. I feel very honored that I can provide those two things for that individual. And I’ll often say to patients, “Well, you’re stuck with me until the end. However that happens, whether you die naturally, or whether you have a medically assisted death and I’m going to do everything I possibly can to make sure you are as comfortable as you can be, and that your symptoms are as well managed as they can be. But what I can’t do as a palliative care practitioner is change the fact that you have this diagnosis and that you’re going to die from it.”
So they understand my limitations. I understand my limitations, but I also am there to reassure them that I will do everything I can for as long as I can to make sure that they’re comfortable. And that’s the ideal, right? We want people to make a decision about medical assistance in dying because they’ve reached a point in their life where are going on is no longer meeting or serving their needs. Not because their symptoms are unmanaged or because they haven’t had a chance to work through psychologically what’s happening to them where they haven’t been given the opportunity to say the things that they need to say.
So I think especially for patients in track one who are at the end of their life, that having access to palliative care in addition to having medical assistance in dying is the ideal. And for many patients, and this is coming out from many anecdotal evidence from practitioners across the country that patients undergo a MAID assessment to have in their back pocket. And they may never go ahead and access that.
They have palliative care and they have the support that they need should they want to access medical assistance in dying, but that support and that knowledge that they have that in their back pocket are enough to allow them to go on to die naturally. So I always think about that when I read the data that comes out from the reports that there’s a percentage of people who went through the made process, but didn’t end up dying from MAID and to me, that number is not a failure. That is one of the many successes of medical assistance in dying that we’ve allowed individuals to know that they have an option if things get too bad, but that they didn’t need to choose it. And I think that’s beautiful.
Okay, question number 10. According to the 2018 information from the Canadian Institute for Health, what percentage of medical students were required to do a mandatory clinical rotation in palliative care? 12%, 23%, 35% or 50%? This is an interesting one. I didn’t know the answer to this before the DWDC brought this forward, but it sadly, doesn’t surprise me.
Yeah, so the vast majority of you were right. Only 12% of medical students in Canada were required to do a mandatory clinical rotation in palliative care. And isn’t that sad? That we’re all going to die, and we would all benefit from good symptom management and a holistic approach to care. And yet only 12% of the people who will become our physicians have been required to train in this specialty. So that means that the majority of medical students don’t understand that palliative care is something that they should all feel responsible for providing no matter what specialty they work in.
When I teach in my undergrad course, I often say to the students, “It doesn’t matter what area of nursing you end up working in. You will take the concepts that you learn in this course, and you will apply them wherever you end up because everybody provides some level of palliative care.” Whether that’s being able to have an uncomfortable conversation about whatever topic, whether that’s being able to hold a patient’s hand while they cry, while they grieve the loss of whatever, their loss of fertility, right?
Even we think of death and birth as being such different things, and the reality is that sad things happen on labor and delivery wards or in fertility clinics, and being able to be present and bear witness to those difficult moments is part of palliative care. I think being able to provide good symptom management after surgery, right? Being able to dose opioids appropriately, and to know when to ask about or when to administer opioid medication, ideally proactively rather than reactively.
Understanding that opioids started low and titrated up is a very safe way to administer opioids. Those things are basic training in palliative care. And not that they’re not necessarily taught in other aspects of medicine and nursing, but when you focus on those as being a part of the holistic approach to caring for an individual and helping them to manage their symptoms, I think it stays with somebody longer. And I know my students have provided a lot of lovely, lovely feedback about how the things that they’ve learned in the short course that I’ve been able to be with them.
They will translate not only within their professional career, but also in their personal career. And I think about that a lot that in my role as a palliative care provider, I learn something from every single patient and family that I interact with. And I am myself and my family all the better for those interactions because we’ve been able to have hard conversations, to have plans in place for when we die. My kids who are eight and five understand and use the word death and dying and are sad about death, but understand that it’s a part of life and those kinds of conversations are possible because of my exposure and the gifts that those patients have given me.
And so I think if all of us as a society we’re able to have more experiences whether we end up working in palliative care as a healthcare provider or not, the more opportunities we have to talk about death and dying and to get comfortable in those types of situations, the better we are as a society in dealing with something that we’re all going to have to deal with personally at some point in our lives, usually multiple times. So I hope that that number increases, and I hope that the small dent that I’m making drop in the ocean that I’m making is creating a ripple effect and that people are talking more openly about this important topic. So I think that’s our last question.
For now. We have one more, but we’re going to save it till the end Valerie. Thank you so much. We’ve had so many questions coming through, so I’m going to try and get through a few of them now, but this was dare I say fun despite the topic, but fun to see all the interaction from all the attendees. And we always love having you because you’re a great presenter and you have a lot of valuable information. So thank you for that. So one question that we got is how does a person access home palliative care and avoid being transferred to an institutional setting?
So that starts fairly early in the journey and I’ve only had ever worked in Ontario from a home care perspective. So I can only speak to Ontario, but I think it’s fairly similar in other provinces where you would be associated or linked with home care who either a health authority or in Ontario, it was the CCACs, the limbs, now it’s home and community care, whichever organization helps to organize things like in-home nursing and home PSW and home therapy. That’s the organization that would help to support people to remain at home.
So in Ontario, people are able to self refer. You don’t need a referral from a medical practitioner to get involved with home care. And so even if having just a care coordinator to oversee your medical journey is a great step even if you don’t need nursing or you don’t need PSW yet, at least you’re in the system. And then as things progress and you do require more support, then you’re already there, and you’ve done the legwork up at the beginning when you were feeling well enough to do so.
So I think that’s the biggest piece of advice is to start that process early, and there really is no too early to have home care involved if you know, definitively that down the road, you want to avoid going into an institution as much as possible, because again, even if they aren’t able to put in support, they’ll be able to speak to you about local options as far as meals on wheels or people who may be able to do some cleaning at home or that thing to help enable you to stay at home as long as possible.
That’s perfect. Thank you. Okay. Another question. “Is hospice care an option for people with dementia and are there special considerations for palliative care with regards to people with a dementia or Alzheimer’s diagnosis?”
That’s a really good question. Dementia is such a tricky diagnosis. So when I was doing my hand gesturing of an individual and end organ disease, and they were having exacerbations and their trajectory went down like this. Well, an individual with dementia, their functional status, their timeline is so long that when they’re functioning really well, it’s way far back and by the time they get to a point where they need a lot of help, their functional status is so low that they’re not quite bed bound, so they don’t meet the hospice criteria, but they’re not functioning independently. And so they need quite a lot of help and that need for help doesn’t necessarily equate with length of life.
So in a cancer patient, we know that when someone becomes bed bound, they likely only have weeks to short months of life left to live. Whereas dementia is not like that, it’s not as predictable. And so someone can live at a very low functional level for a really long time. And so because of that, it’s almost impossible to get someone with a dementia diagnosis admitted to a hospice facility because the length of time that they’ll need that level of support is unknown.
And we recognize that as a gap in our healthcare system that dementia patients really, unless you can get into a long-term care home that has a memory care suite, or has a floor devoted to dementia patients, they are extremely challenging to care for at home. And what we need are our institutions or our settings where an individual can be cared for with a focus on dementia for an extended period of time. So not a traditional hospice where we know that someone’s there for the last little bit of their life, but rather a dementia patient who might be there for a couple of years.
And I think also changing the focus of what our long-term care homes are able to provide right now and helping them to see that what they should be providing is palliative care and that what a great deal of what they are already are providing is palliative care, but helping them to name that and acknowledge that and recognize that because that’s where most patients with dementia who have that caregiving requirement, so helping them to see that symptom management and dementia is just as important and there are frameworks, one called the Gold Standard Framework that speaks to specific diagnoses and being able to identify where a person is in regards to how close they are to end of life and dementia patients.
Once you meet certain criteria, it’s quite obvious that an individual is towards the end of life. And at that point, they may be able to get into a more palliative care specific setting. But again, it’s the unpredictability of their timeline in regards to their diagnosis that makes them a very, very challenging population to care for.
Thanks Valerie, I’m even learning so much from your presentation. So thank you, we got that question a few times, so hopefully that helps answer it for folks. Okay, here’s a question for you, “Is palliative care a difficult field to work in and how do palliative care providers care for themselves and the emotional impact burnout, et cetera that this might have on you or them?”
That’s a lovely question. I totally appreciate that people. I alluded to this, I think that what I do is incredibly hard and wonder how I can do this day to day. But honestly, I don’t feel that at all. I feel so honored and privileged, and honestly, it sounds contrite. But everybody I know that works in palliative care feels similarly.
And I don’t think you can work in this specialty and do this job without feeling that because exactly that you would feel burnt out and overwhelmed and just so sad at the end of the day. And I think what I take away from every patient is to take each day one at a time and to find the joys in life and allow yourself the sadness in life. And to know that that is life, that is the essence of being a human being is experiencing life and there’s ups and downs and goods and bads.
And I think it just gives me a clearer picture of not getting, being able to see the trees through the forest. Every day is something and the grand journey that we’re all on is different and I learned something new from each of my patients and that insight is so beautiful and lovely. One thing that I do that it’s my own secret, I guess, to getting through this is I’m a bit of a fitness buff.
So I work out almost every day and I will often think of my patients when I’m working out because I think of how I’m able to do these things with my body, that they’re not able to do any longer and I honor them in that way that when I feel like I can’t do this, I’m so tired and I can’t breathe, and I just want to stop. I don’t have an excuse. I am doing this for them and that helps me to have a little bit of clarity for the rest of my day.
That’s amazing, yeah. And I’m sure a lot of gratitude comes with that. Right? That’s amazing. Okay, so I just want to read out a few comments that we got because we still have our last polling question, but a lot of lovely comments coming in saying thank you for a very informative presentation. This has been most helpful and encouraging information. Why can’t more palliative care providers be like Valerie? Valerie Cooper, incredibly valuable presentation. What a wonderful person, comprehensive and compassionate, just lovely, lovely comments coming in. So I just want to echo all those. And again, thank you for are joining us because it’s always so great having you at our webinars, so thank you again.
I really appreciate the opportunity. And I would ask each one of you who took something away from this presentation to then pass it forward, pay it forward to somebody in your life where you can pass on a bit of information enter into a conversation to just expand the learning that we’ve done today, so thank you.
Absolutely. And we did record today, so we will be posting this so folks can definitely share the link with their friends and family and spread the information that way as well. So now I’m going to launch our last polling question. If we didn’t get to your question, I know there were a lot that came through and we didn’t have time for as many today as we usually do. So email us firstname.lastname@example.org and we can follow up with you individually if we didn’t get to your question.
So, okay. Here is the last polling question. So please rate your understanding of palliative care following today’s presentation. Just wait a couple seconds. While I’m waiting for everyone to vote or put their answer in, I’ll just remind everyone that we do have another webinar on Thursday. This coming Thursday, January 20th, and our speaker is Dr. VJ Miller and the topic will also be palliative care.
So if you found this session great, we’re going to have another great session on Thursday, sticking with the same theme, same topic, but certainly a lot of different information. So if you can join, the link is in the chat right now, and you can register there. So now, I will share our polling results. So this is a great improvement from what we asked at the beginning. So I guess you did what you came here to do Valerie.
That’s awesome. I can’t see it. Did you share it?
Oh, no I didn’t. There it is.
Yay, that’s awesome. Thank you everybody. And Dr. Miller is a really charismatic speaker. He’s got some personal lived experience as well, and he’s a palliative care physician. So it will be definitely different than this, but hopefully a lot of the information that you’ve learned today will inform the presentation that he gives on Thursday.
Yeah, so hopefully we’ll see you all there. And again, Valerie, just one more time, thank you so much. It was great having you and everyone, enjoy the rest of your afternoon and hopefully we’ll see most of you back here on Thursday. Thanks everyone.
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