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Hello. I’m Frank Ferris, here to talk to you about Palliative care is…Hospice care is.. What are these concepts? That’s what’s going to be our focus in this session.
First, let’s ask each other to think about what adds the most meaning and value in our lives. I’d like you to think about that for you personally. Is it your work? Is it your family? Maybe your children? You love your vacations? You enjoy sports? Maybe it’s going to the movies? Personally, I love to eat. Maybe it’s your spirituality? What are the important things for you over the course of this session? I’d like you to be thinking about those.
And then, I’m going to ask you: What’s health? Now some people would say to me that health is well-being. I’m not sure that’s enough. Or some people would say it’s the absence of disease. I’m also not sure that’s enough.
Isn’t being healthy being able to live life the way you want to? To be able to do the things you like to be able to do. You’re not going to just sit there, you want to function, you want to live your life, you want to do those things that are meaningful and valuable to you. That’s health.
So then, as we ask the question: So, what’s healthcare? Certainly, each one of us working in the healthcare system has been well-trained to look after disease, but I’m not sure that’s enough. As patients come to us, aren’t they asking us to not only help them with their disease but to help them with all the issues that are causing them suffering and their other needs, so that they can get on with their lives. Isn’t it all about living?
So, I’m going to suggest that being a healthcare worker, our task is capacity building. We’re here to give people the capacity to live their lives the way they want to, even in the face of some sort of an illness. That’s what’s really important.
The Modern Illness Experience
So now that we’re talking and thinking about health and healthcare, let’s reflect on the modern illness experience. It’s going to put all of this in a context.
To do that, let’s look at illness in the past. If we go back into the 1800s, people were typically living their lives… An average life expectancy was in the 30s. Most people died of infections or accidents. By the time we get to the mid-1800s people were living into their 40s. By the turn of the century, late 1800s early 1900s, people were living into their 50s. And finally, by the time we get to the mid-1900s, people are living into their 60s.
What changed? Of the big differences, we got our first antibiotic. Developed in the 1920s, penicillin was finally disseminated widely during World War 2, and effectively, by the time we get to 1945, the end of the war, we’re starting to really manage infections very differently. I’m going to suggest that this is really the beginning of the modern illness experience: the 1940s.
Now you could argue, and it’s very important to remember, public health makes a huge difference here as well. We begin to clean up our water supply, and we develop much better sanitation. Those are also significant contributors to our new experience of living with illness.
What begins to happen, how things change. We develop many new medications, many new therapies, we have all sorts of technology. By the time I’m graduating from medical school in 1981, we’re actually doing open-heart surgeries. Wow! We’ve developed much better aseptic technique; we’ve started chemotherapy, we’ve developed radiation therapy.
Today, we actually sometimes cure things. Now, what do we mean by cure? The person on the street thinks, “It’s gone forever isn’t it?” It’s not that five-year survival statistics that we talk about in oncology, we’re talking about really eliminating the disease. And with cancer there are a few but even though they present late, we eliminate, such as thyroid, basal cell cancer of the skin childhood leukemias, Hodgkin’s lymphoma, or testicular cancer in males. Even with advanced-stage disease, today we have a high probability of cure.
But let’s think about heart disease or lung disease ̶ do we really cure anything? If it’s not an infection, probably not. We actually markedly prolong the experience of living with those as we do with many cancers, but even if we transplant, we just replace a failing organ with another organ that’s already been alive and may have some degree of failure.
But we also introduce the risk of graft-versus-host-disease. So, while transplantation helps us control things and people live much longer, it’s not a cure. Many things we’ve learned to control. You now know people are living much longer. When I graduated from medical school in 1981, a woman living with breast cancer metastatic to bone, could expect to live a year. Today with the new therapies we have, if we don’t eliminate it, that woman may still live ten years with our treatments. It’s very successful, and I want us always to honor the success of modern medicine.
In fact, we have changed life expectancy by 20 to 30 years, and it is one of the leaders people living an average of 82 years. USA a little bit less.
As we move to other countries like Brazil, they’re in the mid-70s for an average life expectancy. India is also progressing, living into their 60s early 70s as is the world. Remember, people used to die in their 30s their 40s, and their 50s, even their 60s by the mid-1900s, and today it’s very different.
So, in the face of this success we’ve markedly prolonged survival, and most people are not living disease-free, they’re living with one or more illnesses. What does that mean? Are they getting continued treatment? Are they having other issues that arise? Do they get recurrence? We know this is happening. We also know that the treatments themselves can cause problems, and people may be living with the issues that have been created because of the underlying treatments.
As a result, many people have multiple needs. As illness progresses, they may become dependent, and the dependence may go on for weeks, months, even years. And at times, people today lose capacity to be their own decision-makers. They need a surrogate to help with their decision making, and the question is, does that person know what the patient would hope for?
These are all new issues. We didn’t have to face these in the past but here we are today with a new reality. And modern medicine, if you link it back to 1945, and today is 2020, it is really only 75 years old. This is a huge transformation and a huge success story unprecedented in the history of humankind.
So, what does it look like today? What’s the cancer story? We have many different treatments. Often there’s first-line therapy, second-line therapy, third-line therapy, and often radiation interspersed other surgical interventions. Today immunotherapy. But as we see people begin to decline, we may even still offer them a Phase I clinical trial.
What we do know is 60% of patients with advanced illness in cancer have moderate to severe pain ̶ this is very significant. And what we do know, particularly as they decline, we can expect them to have dependence for two to three months, and some of them will lose capacity to make their own decisions for days or weeks, particularly if they get delirium as part of their advanced illness.
What about organ failure? This is really the new success story, particularly as we’ve learned to control arrhythmias, keep the fluids in the right place, manage the respiratory centers, keep us breathing and functioning well. We’ve learned to manage kidney disease, we have dialysis, and we can manage chronic liver problems as simple examples of organ failure.
But what happens with these patients? They often have a crisis. A crisis may even bring them to hospital, sometimes put them in our intensive care units, and they often rebound but not quite as well as they were before. This progresses and for many patients, they have multiple exacerbations and crises, multiple admissions frequently to our intensive care units. Some people 10, 20 readmissions over the course of their illness, and as you’ll notice rather than a decline, many of these patients die suddenly.
What’s surprising here, and I think many of our colleagues are not aware, more than 50% of these patients also have pain. They’re actually going to be potentially dependent for months to years. I’m aware of patients with either congestive heart failure or chronic obstructive pulmonary disease, were kind of chair-bed-toilet for months to even two, three, or four years. Is this living, or do we need to rethink about this? And many of these folks lose capacity to make decisions for weeks to months, especially if they have intermittent or continuous delirium.
And of course, there’s that new success story isn’t there? It’s dementia. Now that we’re all living much longer, if you get to be 85, you have a 50/50 chance that you’re going to have dementia. Isn’t that exciting? Just what you wanted to hear this morning right? Because I suspect most of us hope to live into our 80s and our 90s, but there’s a huge burden of growing dementia.
You will have the probability of having significant pain. Again, many people don’t think of dementia as painful, but the associated illnesses often are. And dependence and loss of capacity to make decisions will likely ensue for years. People can live with advancing slowly progressive dementia for 10 to 20 years. Isn’t this exciting?
Multiple Needs of Patients & Families
So, today in the face of this huge success of modern medicine, people are living much longer with underlying illnesses, potentially three or four significant illness processes, and they have multiple needs ̶ both the patients and the families. Doesn’t the family also experience the patient’s illness? Absolutely. I’d like to tell you a story. A dear friend of mine who actually worked with us on our education and palliative and end-of-life curriculum that we launched in 1999 through the American Medical Association.
Kit had been a healthcare executive, actually worked for a hospice, ran a hospice, and then she came to work with us at the American Medical Association to develop this curriculum. As part of joining a new organization, you need to go and have a physical exam, and in those days a chest X-ray. Uh-oh! There on the chest X-ray was a large lung mass. She had no idea. You can see how wonderful she’s feeling.
But she says, “Well, I want the best possible treatment. Everybody’s suspecting it’s a cancer. I want surgery. I also want to be comfortable.” She says, “I’m here to make this project work. I want to see this project through I want to continue working.” Of course, she’s torn because she says, “Well, I love my family and I want to spend time with them.”
So, off she goes and has surgery, it’s a subtotal pneumonectomy. The pathology comes back as adenocarcinoma. She has a metastatic workup. There’s no evidence of other cancer. So, in fact, the pathology is adenocarcinoma primary unknown. What’s the prognosis of that? About a year with the best of treatment? That’s the reality today, even in the best of treatment. Unfortunately, we’ve had to cut several nerves for this significant surgery and right after surgery she has post-thoracotomy pain syndrome, and I will tell you, she’s taking between 200 and 300 milligrams of oral morphine equivalents each day along with some adjuvants to control the mixed nociceptive and neuropathic pain she’s experiencing. And I worked with her, I’ll tell you, she continues on that for the rest of her life. What do you think about that? Five days after surgery she’s already on opioids.
What else does Kit need? Her life’s just changed hasn’t it? She got the same future she had before? No…she’s aware of that. Is she going to have treatment beyond the surgery? Maybe. I’ve already highlighted a limited prognosis even with the best of care. She’s got pain. For women, along with that comes nausea. Almost everybody gets constipation, and you imagine she might eventually get shortness of breath, could be a possibility. What about her nutritional state, her ability to function? Is she going to be able to go back to work? What about her family? What about her personal distress? Any anxiety, depression?
What I’ll tell you is her husband plunges into a very significant clinical depression. What about her spiritual questions: “Why me… where’s my God?” All of these come forth for Kit right away. She has multiple issues that are causing her suffering. She has multiple needs, and it’s only a few days after her surgery. But Kit does get better, and she goes back to work and joins us and continues on her mission to see this curriculum launched.
Now let’s consider another patient. I’m going to show you a video from the EPEC-O curriculum. Dr. Charles von Gunten is going to interview Martha, who’s a real patient. Ask yourself as you’re watching the video, what does Martha need? And also ask yourself, what are the clinicians thinking who meet Martha a little later in her illness experience? Let’s watch it, then we’ll come back and talk about it.
(Dr. von Gunten): Can you tell me what your breathing has been like?
(Martha): It’s been very difficult. It’s not too bad when I’m home and under the big concentrator. But it’s when I go out that it’s really annoying.
(Dr. von Gunten): And you’ve been using oxygen when you go out?
(Martha) Yeah, it’s those little canisters.
(Dr. von Gunten) Right.
(Martha) And they’re not sufficient.
(Dr. von Gunten) They’re not?
(Dr. von Gunten) What do you notice when you go out?
(Martha) I get very lightheaded.
(Dr. von Gunten) Lightheaded?
(Martha) Very lightheaded. Dizzy. I know I’m not getting enough oxygen, I can tell. As soon as I get home, I’ll go on the big one because I’ll just be gasping for breath.
(Dr. von Gunten) What goes through your mind when you’re gasping for breath?
(Martha) (bitter chuckle) What the hell is going on? It’s… As I say, I don’t mind using the oxygen at home, but it’s going out with it. It’s impossible.
(Dr. von Gunten) What does that mean to you to go out wearing oxygen?
(Martha) Well it means you can’t shop, you’ve got to schlep the oxygen in one hand, cane in the other. You have to have somebody with you if you’re going to do any shopping, to go to the grocery or a water tower or wherever. It’s very annoying. I hate it.
(Dr. von Gunten) Does that bug you being dependent on those other things?
(Martha) Yes, yes, it does. I hate to have to depend on anyone.
(Dr. von Gunten) You’ve been a very independent woman.
(Dr. von Gunten) You’re coming in the hospital every week.
(Martha) About every week. I’ve been here 21 times in the last couple of years.
(Dr. von Gunten) What I’m interpreting is that when you’re less active, when you’re at home, it’s better.
(Martha) If I’m lying down I have no problem, but I’ve found lately that moving around too much… If I go to the kitchen to do dishes, or I go down the hall to the incinerator, it’s very taxing. Plus, I’ve been having this heart thing.
(Dr. von Gunten) Right.
(Martha) And… Things are not getting any better.
(Dr. von Gunten) Things do seem to be getting worse over time don’t they?
(Martha) They seem to be, yes.
(Dr. von Gunten) Yeah, yeah.
So, what does Martha need? There she is she said her breathing is very difficult, she has to schlep around her oxygen. She doesn’t like to go, take it outside, it’s really challenging, and in fact Martha loves to shop. Would you be happy if you couldn’t get out and shop? Women, would you be happy if you couldn’t get out and really get your hair done or your nails done? And how about you guys? You can’t get out and you can’t drive the car very easily because you’re schlepping around this oxygen. Or maybe we’ve told you that you can’t drive. Multiple issues yes. Martha is frequently short of breath. She was in the hospital 21 times in the last 24 months. What was that all about?
Well, of course, what happens? Typically, patients with breathing problems get short of breath a little later in the day after they get up and start moving around. We can see actually between 2 o’clock in the afternoon at about 10 o’clock at night, they call their doctor in their family doctor’s office, and what’s the answer? Well, the office is already full. Please go to emergency. Oops, so off she goes. And of course, she arrives in the emergency department, and what happens? Investigations, everybody wonders if it’s a crisis, do I need to take her to the intensive care unit? She’s short of breath she has pulmonary fibrosis as well as some heart problems. I bet we’re going to admit her and monitor her for two or three days.
But what does she really need? Well, those clinicians, they saw her walk into the emergency department and on the nineteenth time, can you imagine that some of them said, “Oh my goodness, here comes Martha again! She must be non-compliant.”
I’ll tell you she’s taking her medications exactly the way you prescribed them. Well, so what is she doing here short of breath? Well, what she really needs is a place to phone where a nurse answers and we can provide her with medications to manage her shortness of breath right away. In fact, provide her with some morphine. To do that, we have to have a really quite well-built palliative care program and a good hospice program don’t we? And that’s what we’re going to be talking about.
So, to look at both Kit and Martha, we can think about a framework, a model of the multiple needs of patients and families. We developed this through the Canadian Hospice Palliative Care Association and published this in 2002, both as a standalone document as well as in the Journal of Pain and Symptom Management. I’ve continued to use this, and I’d like to share it with you now.
It’s important, even as hospice and palliative care providers, that you and I know the patient’s story of their disease or diseases. When was it diagnosed? What was the treatment? What’s the associated prognosis? That becomes really important for us to know. We might, in fact, be in a situation where an oncologist or a cardiologist, or a pulmonologist has done a really terrific job, the patient’s care is optimized, or we might be seeing the patient early and working in collaboration to do that. That would be the very best, wouldn’t it?
Of course, many of these patients, just like Kit and Martha, get physical symptoms that cause them distress. Is it the pain, the nausea, the constipation, the shortness of breath? Later in their illness is about fluids and nutrition. They can’t move as easily, schlep that oxygen around: “I don’t like it.” Function becomes really important. And of course, then there’s wounds, a variety of other issues.
And of course, today, there is the issue of people using substances that we didn’t prescribe as healthcare workers, and we need to be aware that those may be confusing the picture or even a real caution for us. We need to evaluate the patient.
Many patients experience multiple psychological issues. Is it fear, worry? Does it turn into anxiety, depression, or even profound distress? I already mentioned to you that Kit’s husband became profoundly depressed. He actually needed not only supportive care but medications from a psychiatrist to carry him on for several months.
Worries about family dynamics, legal issues, and finances. Yes, Kit had a mission, she wanted to continue to live her dream of launching this new curriculum. The important issue was she was actually the major source of income for her family. If she stopped working, what were they going to do? And do they have health insurance, or is healthcare going to be really expensive?
Spiritual questions. I already mentioned that Kit was concerned about, “Why me, where’s my God?” She’d lived her life, her religious practices very carefully. Suddenly, at her young age, she’s facing an advancing illness and the likelihood she’ll die. “What about what I did?” Questions arise, people need help and of course, then there’s the issue of, “Well, will I transcend, and what’s going to happen next?” Questions of meaning and value. “Was my life worthwhile?”
There’s also the practical issues: caregiving, teamwork, “Will I have volunteers?” And the practical reality of, “If I have dependents, young children, what’s going to happen?” As well as, “If I have pets, who’s going to look after my pets particularly while I’m hospitalized?” Or, “What happens if I die?” or certainly getting close to dying, “Who’s going to provide my care, and what will happen to my estate all my property, and all my relationships?”
Now, a core part of what you and I do in palliative care and hospice care, is of course, end-of-life care. We need to be very good at helping people prepare, to manage the last hours of life, and what to do when death actually occurs.
And finally ̶ and I’ve separated it away from the social and the psychological ̶ the issue of loss. Kit came to do a new job. As a result of a routine exam, she suddenly discovered she had a life-limiting illness. Did she just lose her future? You bet she did. And over the course of her illness, she’s going to have many other losses and lots of emotions that will come from those, as well as when she dies, her family is going to lose Kit, and we’re going to need to support them. As they realize what has happened, they realize the significance of what’s happened, they recognize all the things that have changed, and they begin to rebuild their lives, and this can take weeks, to months, to years.
And as I’ve already highlighted, the needs are not just about Kit or Martha, not just about the patient, it’s about the whole family isn’t it? They live with the illness. Certainly, as the patient gets a diagnosis, roles and responsibilities begin to change in the face of illness. They live with the decision making, they live with the treatments and their effects. And the family’s going to watch Kit and Martha both die, and then they’re going to be left with the memories.
And what Tuckman tells us is roles and responsibilities change completely…this family unit. This family group will start over in forming, storming, norming, and performing, and they’re going to need real help with this transition.
So, why did Kit and Martha come to the healthcare system? Well, I kind of made it very plain that while they were on a normal path of life with an anticipated future, suddenly with a diagnosis, everything is uncertain. Do you like to be out of control? Do you like uncertainty? I certainly don’t, I bet you don’t.
And Brody tells us they come to the healthcare system not only for us to fix the disease but to help them fix what they would say is a broken story. They want to get back to life as they know it. They want to have the capacity to do the things they enjoy. Just like we said in the beginning, you and I are capacity builders. Brody said this to us in the mid-1980s. We still haven’t really heard the message have we? Let’s do it very differently.
So now, we’ve put the modern illness experience in context, and we’re thinking about the multiple needs of our patients and their families. I’d like you to imagine yourself now living with an advancing illness. Let’s imagine it’s been going on for two or three months. You’ve not been feeling so well, you’ve started to lose some weight, your appetite’s not good. Like most good healthcare workers, you avoided going to see the doctor, but over the last month, your pain and nausea have been getting worse. And a couple weeks ago, you really had to go to see the doctor, you couldn’t tolerate it anymore. And let’s imagine that you went back in the last five days and you learned that you have an advancing life-threatening illness, and you only have a few weeks left to live. It does happen this way for many of our patients, and of course, their families get swept along, don’t they? How will you feel if it’s you?
So, you don’t have a lot of choice, but what do you want your illness experience to be? Should I manage the disease? Should I manage the multiple issues that are causing you and your family suffering and distress?
If you had a choice, which one of these four curves would you choose? Would you like to experience the organ failure story? Maybe the dementia story? Or the cancer story you know, first-line therapy, second-line therapy, third-line therapy? “Oh, we have our Phase I clinical trial for you!” Or would you hope for sudden death?
When I do this in classrooms, almost 90% of the people in the room put up their hand and say, “I want curve number four please, sudden death.” And I say to them ,”You’re all delusional. None of your colleagues sitting beside you are going to let you die suddenly.” You’re going to have one, two, three, or even four major diagnoses before you die. Which one will be your dominant?
Now, given the fact that you only have a few weeks left to live, maybe a few months, what will add most to your sense of meaning and value in your life? Do you want to spend time with your families? Or do you want to go on a vacation? Like Kit, do you still want to work, or you’re going to retire? Everybody’s going to have a personal perspective.
So, given this situation where you’re likely to have multiple needs and a whole variety of symptoms over the course of your illness, how long would you like to wait before your symptoms are controlled? Is a week OK? Most people when I ask that question say, “Are you kidding? I want it managed now!” And when I ask them what now means, they say, “A few minutes to a few hours.” Is that the standard of care that you provide to your patients? Will they get the same quick relief of their symptoms that you hope for yourself? I hope so.
What I see happening in our healthcare system is that’s not necessarily true. Our clinicians aren’t even prescribing medications appropriately, so the pharmacokinetics, the evidence that we know. I hope you’ll start to do that and use one of our other videos to learn how to do that effectively.
And would you like to be a burden for your family? Most people would say, “Are you kidding?” But what we know is with advancing illness, somebody is going to have to care for you. Is it going to be for a couple of months with cancer? Or is it going to be a couple or even four years with organ failure? Or is it going to be years to a decade or more with dementia? Who in your family is going to care for you? In North America, we know it needs to be one of your three daughters. And that daughter is going to lose her career and future. How many of you daughters are prepared to look after your father? It’s a real good question isn’t it? And do you want one of your daughters to lose her future?
Or, of course, you can pay for care, can’t you? You could go to a long-term care facility or have somebody come into your home. That costs money. The average long-term care facility here in Columbus, Ohio, costs about $300 a day. That’s 9,000 a month. That’s over 100,000 a year. If you need to place somebody, will you have the money to pay for that? Will we be able to pay for you? The average American retires with $20, 000 in their bank account. If they don’t, does that mean bankruptcy for the family? Do you want to be that level of burden for your family? I suspect not.
So how do we help people prepare? Are you talking about this with your patients and their families?
And ultimately, the question comes: “Where would you like to receive your care when you are dependent?” How many of you would say, “Oh, one of the acute care hospitals in my community would be just fine.” Almost everybody that I ask says, “No, I don’t want that!” Or a nice long-term care facility?” No, I don’t want that.” Most people say, “I’d like to be at home.” Is there a home care system in place to care for you in that setting? Many places around the globe, I don’t find that. We need to develop it because most people would say, “I want to be at home.” We need to teach the family how to provide care and support them.
Of course, they’re going to experience the illness, the treatments, they’re going to experience the patient or your death. And they’re going to need help with their bereavement. And how many of you would say, “Well yes, I’d like to be at home even if I’m a burden.” My hand is actually up, but I know I have resources and people who will help me. Well, we need to prepare for this, and we need to talk about this don’t we? This is all a part of our palliative care process.
Palliative Care is…
So, now that we’ve considered the modern illness experience, and we recognize that patients have multiple issues that are causing them suffering, we have the growing need for palliative care ̶ a concept developed by Dr. Balfour Mount, who was working at the Royal Victoria Hospital in Montreal as he brought Dame Cicely Saunders’ concept of hospice to Canada, a bilingual country, where in French the word hospice is not acceptable. It’s been known for centuries as a place for the wayward and the derelict. Nobody would go for care to a hospice, in any of the countries where they use the Romance languages, such as French, Spanish Portuguese, Italian. So, he looked at the dictionary, he found the Latin word , “palliare, ” which means to cloak, to cover up, and he coined the concept of palliative care ̶ the term that is now pretty much universally used to describe this new medical discipline.
Mike Hill and Sue Collins at Moonshine movies had the opportunity to capture a whole series of videos called Life Before Death. One of them is What is Palliative Care. Let’s look at it now to get a broad concept, even from Dr. Balfour Mount’s eyes.
(Dr. Faith) One of the things we want to bring around the end of life is dignity. We want people to die with dignity and quality of life. If you talk to anybody who have lost a loved one, the greatest regret people have is, that “I wish I said goodbye. I wish I spent ten minutes with my dad and told him how wonderful he was.” And I regret that personally, because my dad passed away in great pain. His pain was not controlled, so he died in a lot of pain. And there was no opportunity, he could not even comprehend who was there with him when he died. And I think that is a regret for all of us when we lose our loved ones and they’re in so much pain they’re wailing and screaming, they do not even know you are there. So, it’s just providing that dignity and an opportunity for people to put their business in order, because at the end of life your value as a human being does not stop.
(Dr Ferris) Many people ask, “What is palliative care?” I see it simply as therapeutic interventions, to try to relieve and even prevent issues that cause suffering.
(Dr. Mount) Palliative care is whole-person care.
(Dr. Ferris) To try to avoid pain or when it starts, to manage it well. To deal with many other symptoms that I might experience.
(Dr. Mount) It takes seriously physical, psychological social….
(Dr. Ferris) Anxiety, depression, challenges within my family.
(Dr. Mount) Existential, spiritual, financial issues.
(Dr. Ferris) Spiritual questions. Why me? Where is God? What about the meaning and value in my life?
(Dr. Mount) It recognizes the profound importance of Cicely’s term “total pain.”
(Dr. Ferris) To help me manage the advancing illness as I approach the end of my life. To help me prepare for the end of my life, and specifically, to manage all of the issues that arise during the dying process so that I can feel as comfortable as possible and have a safe transition as I die.
(Dr. Mount) Whole-person care is a central concept. But the foundation of the edifice of whole-person care is excellence in physical care. Good nursing care. Good, knowledgeable, available, medical, input. This is not a place for amateur night. These are the sickest people in the healthcare system. They deserve the best care.
(Female Patient) Between the hospice people and my doctor and the others, the nurses specialists, they’ve turned me around so that I can now sit up, and I can you know…It’s a marvelous thing.
(Daughter of Patient) Thanks to them we have…My mother has had more days when she is comfortable, and when she’s comfortable, we can laugh and joke and have meals together and just kind of treasure this time together. And without them, it would probably be a much different situation.
(Dr. Irwin) We have this wonderful profession of hospice and palliative medicine that is an international profession, and so people don’t have to go through this alone, that there are experts that can help them to walk through this and that people do not have to die in pain.
In an age where we’re doing such wonderful things in all specialized areas, to then bring amateurism to the sickest people in the healthcare system, it’s ridiculous, particularly when we know how much that we can achieve, how helpful we can be.
So, you hear in the video, palliative care is about managing the experience of the patient while we manage all of their underlying diseases. As we had a chance to look at the concept through our Canadian Hospice Palliative Care Association project, we really distilled it down to palliative care is about preventing and relieving suffering, and promoting quality of life, death, and bereavement for patients and those living with the patient ̶ patients with any diagnosis and any time there is a need.
Historically, we saw a number of different diagrams. This is the base for the diagrams I’m going to use where we can see the patient is living their lives and presents to the healthcare system with some sort of symptoms, typically, and we make a diagnosis. They have a focus on managing their disease, and we wait until they die.
Typically, we’re providing them with a variety of therapies to try to control their disease, particularly infections, and that’s where we needed to start.
But then, historically, people began, such as Dame Cicely Saunders and Balfour Mount, to recognize there was a need for end-of-life care, and we needed to look after the families who were bereft. And this became palliative care, the blue and the yellow.
Today, we think of this quite differently, as we’ve recognized that actually doing things early may be very important. You could hear in Kit’s story, while she didn’t know she had a tumor, right after surgery she was using significant pain medications, going to have constipation and maybe nausea, maybe multiple other issues.
Today, we think of this quite differently, as we’ve recognized that actually doing things early may be very important. You could hear in Kit’s story, while she didn’t know she had a tumor, right after surgery she was using significant pain medications, going to have constipation and maybe nausea, maybe multiple other issues.
So, do we actually need to start palliative care during acute anti-disease therapy right at the beginning? I think we do. We need to integrate it very early. Now, maybe that the patient gets better and can go back to work, Kit certainly did.
But during survivorship, will there actually be an intermittent need for palliative care supports and services? Can you imagine fluctuating anxiety, sometimes depression? Could you imagine there might be symptoms coming from the treatment? We see this more and more. We see more and more survivors actually in our palliative care clinics.
Of course, it makes sense that as illness advances, they’re going to have more issues that cause suffering and will have a certain need for more increasing focus on palliative care, and then, as they get towards the end of life, whether that’s six months, three months, nine months, it depends on how you define it, a real focus will shift from managing the disease to support, comfort, and how do we prepare for the end of life. And, of course, bereavement care for the families. And all of this spectrum is the modern perspective of palliative care.
Now, who provides this? Well, it’s not just about the doctor. The doctor is going to need lots of help. Nurses, spiritual counselors, medical counselors, whether they’re social workers or psychologists, bereavement counselors, pharmacists ̶ a whole team is going to be needed. Physiotherapists may be very important to help maintain function. It becomes a team. And of course, the team includes the patients, the family, and community volunteers who may be present. How do we teach them so they have the skills to provide the care to the patient? How do we support them? How do we make sure we look after them after the patient dies? And where do we do this?
We might do it acutely in the hospital. Maybe in the home. Will people come to our ambulatory clinics? Will we ultimately need specialized palliative care inpatient units? Or will we be able to provide their care if they go to a long-term care facility? We need to fully integrate palliative care, not only early, but in the healthcare system. All aspects.
I like to simply explain to patients and families that my goal, when I provide palliative care, is to help them eat well, sleep well, maintain their function and reduce their stress. What I believe is not only will they live better, we now have mounting evidence that they’ll actually live longer, that I will be able to add life to their days and days to their life. Who wouldn’t want that? Isn’t this the best of medical care? They’re going to be able to continue life and the things they like to do for as long as possible, because I’m managing the issues that cause them suffering.
The World Health Assembly in 2014 said we really needed to strengthen palliative care as a component of comprehensive care throughout the life course. They said palliative care is essential as well as essential medicines, that it’s an ethical responsibility of all healthcare systems in the world, that we need to put in place the policies, the funding, and the education to support and make sure everybody has the skills they need. And they said ̶ and I think this is fundamentally important ̶ that primary care, secondary, and even specialists need to be developed with palliative care skills.
This is a skill for every doctor, every nurse, every social worker, every pharmacist in our healthcare system. And for people seeing a lot of patients with advancing illnesses, such as oncologists or cardiologists or pulmonologists, maybe they need some secondary-level skills. And of course, we need to develop specialists, which is why many countries including the United States, now recognize palliative medicine as a new medical specialty. The consultants are there for when the primary or secondary level providers just find the complexity so much that they need some assistance. Just like you do in cardiology. Most of us can manage congestive heart failure as physicians, but when it gets tough we need a cardiologist.
The American Society of Clinical Oncology really looked at the value of integrating this early, based on the evolving trials, and in 2017 put forward a practice guideline update recommending that inpatients and outpatients with advanced cancer should receive dedicated palliative care services early in the disease course, concurrent with active treatment. Let’s integrate it. Imagine that I might work beside the oncologist. The outcomes could be amazing. Even if the oncologist has primary skills, they may be very busy treating the underlying cancer, I can be a partner. We can do this together. We can share the responsibilities. Do you think that might have a better outcome for many of our patients? We’re beginning to see clear evidence they not only live better, they also live longer.
Hospice Care is…
So now we’ve talked about palliative care. Many people use the concept of hospice care. What’s that? Well, we can put it in the context of our same picture, can’t we?
We said there was an initial focus on end-of-life care, and that’s where many of hospice programs have started, and even introduced the concept, even palliative care programs have started, whether it’s with a patient of prognosis of less than six months or less than three months, or somewhere in that range, it’s for patients approaching the end of their lives, and many people will say, “And supports for families who are bereft,” that’s hospice care. And I would certainly agree with that. It’s a subset of palliative care, and in many settings where palliative care services exist, that’s kind of the umbrella: hospice care is about enhanced palliative care. And that’s certainly true here in the United States.
Now, palliative care first came to the United States, both as hospice care and then a little bit of palliative care in the early 70s. By the late 70s, our Medicare ̶ which is the insurance program for people 65 or older ̶ we had begun to realize that Medicare wasn’t caring for patients with advanced illness the way they hoped for. They looked at the issues, and they realized there was a need for a specialized service that they called hospice care based on this early history, to provide care for people approaching the end of their lives. It became a carve-out for Medicare Part A. It was introduced in 1982 and enacted in 1983 and has ultimately in the United States, been adopted by all of our different Medicaid programs, which are the programs that provide care for people with no resources, or our commercial insurers who are mostly insuring people who are in our workforce.
So, to be eligible for this unique benefit in the United States, a special insurance program to provide care for patients with advanced illness who are approaching the end of their lives, two physicians need to review the patient. Typically, the patient’s primary provider and a hospice medical director like myself, and I and the other physician both need to be able to certify that we believe that the patient has a prognosis of six months or less if the illness runs its normal course.
Now, what I like to say to people in the community, who might refer to our hospice, look at the patient and answer the question: Would you be surprised if this patient died in the next six months? It’s much more reliable that we would answer correctly. If you think that’s the case, refer the patient to us, and we will assess the patient in terms of prognosis. We only have to be 51% certain, and of course, you know that median survival, which is where our population data comes from, is really about 50% of the patients will live less and 50% will live longer. So, no surprise, we only have to be 51% certain.
So once two physicians have initially certified the patient as eligible for hospice care through the Medicare hospice benefit or other similar benefits, the patient gets 90 days of care from a specialized hospice team provided by a Medicare-certified hospice. After those 90 days, it’s the obligation of the team to reassess the patient.
If the physician, now just the hospice medical director, is able to re-certify the patient, they again believe that the patient has a prognosis of six months or less, if the illness runs its normal course, the patient is eligible for another 90 days.
At 180 days, the team and the physician need to reassess the patient. This time, a provider, a physician, or a nurse practitioner, needs to actually go and see the patient and do what’s called a face to face ̶ and I’ve said F2F for face to face ̶ in order to establish that the patient truly has a prognosis of less than six months if the illness runs its normal course.
They do this repeatedly, and each time, the patient gets 60 days. At the end of the 60 days, they need to do another face to face and re-certify the patient. The reality is the patient can have an unlimited number of 60-day periods. So, while the entry criteria is the patient must have a prognosis of less than six months, if the illness runs its normal course, the patient could actually be on hospice services for many more than 180 days.
Now, when a patient enrolls in hospice care what do they get? Well, care is for patients and their families. Our goal in hospice is to treat and prevent issues that cause suffering. We’re also expected to promote quality of life, both during the illness and for the bereavement experience of the families. We facilitate transitions, our goal is to help people achieve their full potential and finish their life story. And our goal is to help families rebuild their lives after the patient dies. Believe it or not it’s actually possible for a patient to have a vacation in some other setting if they are capable of it, even though their prognosis is still limited. Our goal is to make stories, to help people realize their full potential and to help people close their lives together.
People can get a variety of services. Core is skilled nursing medical counseling, and spiritual counseling in the United States, frequently provided by pastoral education certified chaplains. They get access to healthcare aides, volunteers. There’s a 24-hour around-the-clock service and families get bereavement support for at least 13 months. Medications, therapies that are focused on their palliation, medical equipment and supplies are all paid for by the hospice. 100% of the care is paid for. Now, palliative medicine physicians are also available to the patient. We actually bill separately, but it’s all part of the package of great hospice care.
Who would want, with advancing illness approaching the end of their lives, not to have access to great medical care? I think all of us would want that. So, it’s a package of all the core disciplines that patients need to prevent, relieve their suffering, and promote quality of life.
Patients can get care under several different levels. Routine care is provided in their homes, or long-term care facilities, and it’s that day-to-day sort of care that people get. Respite care is available to families who get really tired and need a small break, five days to recover and get past their exhaustion. Continuous care is available in a very limited format in most settings to provide acute symptom management in the home or long-term care facilities. It’s very much there to manage that acute pain or acute delirium. And once it settles, we go back to routine care.
And for the patient who can’t be cared for at home, who needs acute symptom management, we’re also able to admit them to a hospital where the hospice provides the care along with skilled clinicians.
Value for Kit and Martha
So, could you imagine that Kit and Martha, who got relatively early access to palliative and to hospice care actually got value from them? Let’s go back to their stories.
I told you Kit had surgery and really needed a lot of support with lots of issues and lots of pain, and within six months, she had a new mass growing in her axilla. She was working with an oncologist who felt like it might be coming from her breast or could be from her lung. Better try some chemotherapy. He gave her carboplatinum and Taxol, six cycles, full dose. Is that easy, moderate or difficult treatment? Most people would say, “Oh my goodness that’s really strong, that can cause a lot of issues, and a lot of suffering. Fatigue, weakness, nausea, a variety of things.”
Well, she continued to work through that. She then went on to have some radiation therapy, 6,000 centigrades and 30 fractions to which she got a partial response. Is that easy, moderate, or tough treatment? Again, most people would say, “Well that’s pretty intense therapy!” Finally, at 21 months, she had pretty stable disease still in her lymph nodes. She went back to the surgeon, and she said, “Please could you cut this out for me?” He said, “Well I can do anything but it’s not going to help you.” He was very honest with her. He said, “If I cut it out you’re going to have a lot more suffering. I don’t recommend that, and I won’t do that for you.”
Now, what do you think happened in those 21 months? Well, in fact, Kit saw the launch of the curriculum. She was a part of the development, the launch and the follow-up. In fact, in those 21 months, because she had the best of cancer care and the best of palliative care integrated from day one, she missed one day of work. I know that because I was working with her.
At 21 months, Kit made a decision: “OK I’ve seen the launch, I now need to focus on my family.” She joined her husband and her other family, she had two daughters and four grandchildren. He was no longer depressed because he’d gotten the best of care, and she said, “I’m going to spend the days at home.” They had a lot of time together. Her one daughter who’d been living in India visited twice. She spent lots of time with her four grandchildren.
Kit also did something quite creative. She said, “I don’t want a memorial service, I want to celebrate my life with each team I’ve been working with.” Her family organized a dinner. All of us who’d been part of the curriculum development went over one night, we celebrated, we enjoyed each other, we had dinner. And before I left, Kit gave me a very small gift, and she said some final words to me, words I will never forget. And as I left that evening, I knew I would never see Kit again. She did this with many different groups. And finally, at 24 months, Kit died quietly at home, surrounded by her loving family, cared for by a very skilled hospice. She got huge value from both palliative care and hospice care, and remember, with adenocarcinoma primary unknown, sort of the median prognosis is in the range of one year, this is two months ̶ I’m sorry, two years, that she’s dying.
Well, what about Martha? Martha was quite amazing. She was part of the hospice. When you saw her in the video they had just admitted her. She got short of breath many times, but she didn’t have to go to the hospital. In fact, she never went back to the hospital again. She would call the triage line, the nurse would intervene, guide her through what to do. Sometimes new prescriptions were needed to change the dose of morphine or other medications. The nurse would call the doctor, the medications would be adjusted. She didn’t go back to the hospital. And like many patients with congestive heart failure and pulmonary disease, one morning a hospice nurse called, there was no answer, she got the key from the neighbor, and she discovered that Martha had died suddenly at home that night.
You might say, “Wow, again, living for two years like that!” Well, what I’ll also tell you is, Martha continued to shop, and she got her hair done, and she got her nails done, and it wasn’t so bad schlepping the oxygen.
So now you’ve had a chance to reflect on the modern illness experience and the multiple needs that cause patients and families suffering. You’ve been able to hear Kit and Martha’s stories. So, I’m going to ask you: What experience are you going to now provide for your patients and their families? Are you going to be focused simply on disease management, or are you going to begin to unwrap all these issues and help people have the best possible experience?
Because the bottom line is, it’s not only about your patients and their families, but one day it’s going to be about your family, isn’t it? What kind of an experience would you like them to have? And of course, because we’re all human, one day it’s going to be our experience. We’re going to have one, two, three, or four major illnesses, and we are likely going to have more issues. Even in survivorship that cause us suffering, as well as when we approach the end of life. Would you like to have those managed quickly so that you will be able to continue to live life the way you want to for as long as possible? I suspect everyone is going to say, “Absolutely!” So, is that the standard you’re providing to your patients and families today?
The bottom line is the way we provide care and the community resources we develop will determine how we are going to be cared for when it’s our turn. My question to every one of you all around the globe is: Will your community be ready for you? This is a chance for us to change the way the health system functions, not only the way we provide care. Will you access palliative care and hospice services early so patients get the best possible benefit along with disease management, so that in fact they can not only live better, but we’re beginning to see will they actually live much longer because they’re eating well, sleeping well, maintaining their function, and their stress is much less. I believe that’s the new future.
So, for each of you I certainly hope that you personally, will find meaning and value and quality in your life. Most importantly, as a healthcare practitioner and a capacity builder, I hope that you will inspire and empower it in everybody you touch. It’s a wonderful opportunity, and if you think about, as you reflect on your life, will that mean your life has been even more meaningful, valuable, and your legacy will be amazing.
Gandhi tells us that we need to be the change we want to see in the world. It all starts with you. I hope you will strive to build a good team, you will use palliative and hospice services early, and I hope that you will really find our palliative care interdisciplinary curriculum to be a great way to learn this new knowledge and provide these new skills. I look forward to getting your feedback about all of our videos.