Eduardo Bruera, M.D.
Department Chair
Department of Palliative Care and Rehabilitation Medicine
The University of Texas MD Anderson Cancer Center
Hi, my name is Eduardo Bruera. I am the Chair of the Department of Palliative Care and Rehabilitation at the University of Texas MD Anderson Cancer Center. Our subject today is Palliative Care and I would like to take the opportunity to discuss with all of you the challenges and opportunity of serving cancer patients, particularly breast cancer patients, when the cure is not possible or when there is significant symptom distress.
This patient had a number of problems. Some of them are clearly visible to you. There was profound fatigue. There was weight loss. There was pain due to bony metastasis. There was the beginning of cognitive failure and there was significant emotional distress.
All this comes together as a package and patients with breast cancer present with a number of symptoms that occur together. Pain is certainly the one that we fear the most. But other symptoms, such as fatigue, nausea, vomiting, and near the end of life, confusion and agitation, are as frequent as pain.
We now know a little bit more about why those symptoms happen and basically what the purpose of palliative care is. And basically the reason why many of these symptoms happen together is because they all happen at the brain level and the cancer talks to the brain following similar mechanisms. The afferent somatic nerves that bring pain and bring afferent stimulation of other natures, the afferent autonomic nerves, tumor by-products, tumor products made by the cancer cells, but also products that we make in response to the presence of the tumor. Cytokines that not only increase the afferent response of the autonomic and somatic nerves, but that predominantly also work on the neurons. So, we now understand why many of the symptoms happen together.
When the patient is sick, the family has a lot of distress, physical distress, emotional distress and financial distress. So, the purpose of Palliative Care is not just to support the patient, but also to support the family in this very difficult time.
Where does Palliative Care help? Patients who have severe symptoms at any point of the trajectory of illness. Patients arriving for clinical trials who might be quite ill, but are still eligible to receive aggressive treatment. Complex discharge planning, when people are going to go back to the community (and we will spend some minutes discussing this), and finally, of course, with end of life care that has been perhaps the role that most of you might be more familiar with.
So, what does Palliative Care do? We assess symptoms and that might be the main challenge. We treat difficult symptoms. We provide psychosocial support to our patients and to their families. We plan discharge and we conduct research and education in all these areas.
When we assess symptoms, this you see there is what we do in all the patients who come to our Outpatient Center, Mobile Team, Palliative Care Unit is called ESAS, the Edmonton Symptom Assessment System. The ESAS is a very simple question from 0-10 of a number of symptoms that can be completed by your patient in the waiting room or in the inpatient area. And basically, in two minutes, you have a very good understanding about how the patient feels with regards to nine common symptoms.
You do not need the ESAS; you can do it like they do it in Brazil with circles. You can do it with fingers of one hand. Almost any way of measuring symptoms is valid. The most important aspect is to do it ...
and also to somehow put it in the chart, so it becomes a visible expression of the patient's experience. This patient, you see here, the intensity of the different symptoms, and this patient died in good symptom control.
This patient died in poor symptom control. And this allows us to monitor the problem, but also to figure out what may have gone wrong. What could we do better over time in different clinical settings?
This is the outpatient graph with the patient having these symptoms and...
...this is what happens after a weekend of care. If you look at the date, really the date of this appointment was after...
...so this is after one week of care by our team. So, what did we do wrong to increase the level of symptoms to this level...
...from what was originally this level? Well, this is probably one of the big challenges of Palliative Care...
That is, what are we measuring when we measure those symptoms? We are not able to measure the production of pain, for example. 78% of bony metastases do not hurt and the 22% that hurt do not look any different from those that hurt. The perception, how much of that stimulation reaches the somatosensory cortex, can also not be measured. So, there is modulation that amplifies, but there is also a lot of modulation that reduces the amount of production that reaches the somatosensory cortex. That not only happens with pain. The same thing can be said about dyspnea at the level of lung, nausea at the level of the stomach. We just are unable to measure how much symptoms are being produced and how much are being perceived. If we were able to measure it, this would be a wonderful opportunity because that number would be the blood sugar of a diabetic or the blood pressure of a hypertensive. It would be a number that reflects the pathophysiology of the problem, but the numbers we use when we assess symptoms in our patients do not reflect the pathophysiology and they do not even reflect how much of that makes it to the brain. They reflect what patients tell us and so there is variation in production, variation in perception. And finally the way we describe a certain amount of perception is impacted by a number of variables: cultural beliefs, mood, etc. And that is ultimately what we treat.
So, two patients may complain of the same intensity of pain, 8 out of 10. In patient #1, nociception is 85% of the reason for this complaint. This patient is going to respond very well to a painkiller. This other patient has the same pain intensity, but nociception only contributes a small proportion to that 8 out of 10. This patient will not respond that well to the analgesic.
So, this patient whose mom died four years ago of breast cancer and has metastasis to the right hip was complaining of very severe pain and there were four components. The leg pain, an incidental component whenever she moved, the fear about pain increase in the future, and the tolerance to the opioid analgesic and degrees of response.
So, after addressing those four components is that we can achieve response. In the case of this patient with fatigue 8 out of 10, in the patient #1, depression was the explanation of most of the complaint and an antidepressant will be very effective. In this other patient, the same intensity of fatigue [but] no accurate response to depression.
So, one of the lessons from assessing the symptoms in our patients with cancer is that the cancer contributes, but there are always multidimensional complexes. There are multiple contributors to that 8 out of 10 or 9 out of10 the patient tells us. The treatments address the tumor mass or the brain perception.
The more emerging view about how we treat symptoms. We might treat the function without decreasing the tumor mass. We might treat some of the intermediary targets. And finally we might also treat the perception at the level of the brain.
Fatigue is the most common symptom and a number of contributors exist for this syndrome. Certainly, the main ones are here. Cachexia is one of the most common ones. It happens later in breast cancer, but it is almost universal near the end of life. Depression, deconditioning, drugs, hypogonadism, and autonomic failure are all causes for fatigue. Anemia is a much less relevant cause for fatigue in our patients.
And when a patient presents with fatigue or asthenia, we can do two things. We can treat underlying causes if they are responsive to treatment. Or we can treat the symptom itself. And, for the symptom itself, there are medications that are being used and tested, but there are also non-pharmacological interventions such as counseling, physiotherapy, particularly exercise, and occupational therapy.
Anorexia and cachexia are very common and basically the main reason why this happens is metabolic. So, the patients are unable to use their metabolic machinery to make protein and fat. And that is why anorexia and cachexia are not reversible with simple nutritional administration. It is not a matter of entry of energy and consumption. It is a matter of having this metabolic inability to make protein and fat. There are other contributors that make the anorexia and cachexia worse, like dysphagia, bowel obstruction, constipation that is frequently under diagnosed, medications, metabolic and autonomic failure. So, I think this hopefully gives us the picture that all these syndromes are multidimensional.
Delirium, that is the most common syndrome near the end of life, basically means confusion, disorientation, plus/minus agitation. And it does happen universally in our patients with cancer whether they are receiving opioids or not. If they are receiving opioids, they can aggravate the syndrome. And a number of other factors you can see here are contributors to delirium. So, early diagnosis, early management reassures the patients and reassures particularly the families, as the patients become confused, that they might be amplifying symptoms that before they were well controlled. Or they might be irritable and apparently unreasonable. And that is not because of issues of personality, but because the brain is starting to fail as it will universally near the end of life.
So, one of the resources to address all these issues is to put together a team. A team of colleagues, in which the physician is supported by a number of individuals who can address the suffering of that patient in a disciplined way.
The most sophisticated center for that is the Palliative Care Unit. The Palliative Care Unit is the Intensive Care Unit for the support of patients with symptom distress. And we can manage the most difficult problems, provide attention to the physical plant, education, and research.
So, Palliative Care Units look slightly different from the regular wards.
And the outcomes obtained in those units, such as you see here...
...and the type of visitors that you see in those units are...
...different from what you see in the regular wards because the emphasis is on impeccable management of physical and psychosocial distress. The Unit we have at MD Anderson has been helpful not only in serving a large number of patients. But since its inception, the first thing you see is that, after it opened in 2002, what you see is a significant drop in the number of Medical Intensive Care Unit deaths in the MD Anderson, not because patients were transferred from MICU to the Palliative Care Unit, but because the presence of the unit provided an alternative site for these patients to receive care.
So, the percentage of patients accessing palliative care before death increased dramatically after the opening of the unit...
...and basically the number of patients dying at the PCU was larger over time predominantly from solid as compared to hematological malignancies.
Reimbursement for Palliative Care Units can be very good, actually the same or superior to oncology wards and, therefore, Palliative Care Units can be quite profitable for institutions. And there is a reluctance to have Palliative Care Units because there is sometimes a misperception regarding the ability to operate these units.
And another misperception is that the units might increase mortality rate and this is the mortality rate. And after about 8 years of operating this program regularly the mortality rate at MD Anderson has not increased. And the mortality rate in a significant number of centers where Palliative Care Units do not exist have increased. Because of the presence of targeted therapies, more Phase I interventions that maintain patients in cancer centers longer. The mortality rate in other centers that do not operate Palliative Care Units has increased.
Now, we wanted to know the time between the first time palliative care patients are referred and the patient dies. And basically, our goal was to see the number of days between this first consult and death.
We looked at more than 3000 patients referred...
...and basically this is the time between the first palliative care consult and death. The patient was known to have advanced cancer 250 days before dying, but only 42 of those days were spent referred to palliative care. So, the majority of the advanced cancer time the patient did not get the benefit of palliative care.
When we looked over time, we hoped to see that patients might be referred earlier, but that was not the case. The patients remained within 30 to 40 days before death. And the time of advanced cancer to death remained about the same. So, patients are known to have advanced cancer for about 240 to 250 days, but they are referred to palliative care only for the shortest proportion of that time.
This is the time between referral to palliative care and death, looked as survival curves, and you can see that the majority of patients are referred late.
In the case of leukemias and liquid tumors, the referral is really late, about two weeks before death as compare to about, you know, 48 days in patients with solid tumors.
So, could it be the name "palliative"? And what we did is we surveyed a random sample of 100 medical oncologists and 100 physician assistants or nurse practitioners. We had a very good response rate...
...and we asked them basically a number of questions about the name "palliative" and the name "supportive". So, these were a significant representative number of practitioners in palliative care-- in medical oncology at MD Anderson....
...and you can look at all together because there was no difference between the medical oncologists and the physician assistants. What you can see here is that, if the patient is not longer receiving therapy in more than 90% of the cases, both would refer to a service named Palliative Care or to a service named Supportive Care. However, as the disease gets earlier, you can see that progressively patients are less likely to be referred to a service named Palliative Care as compared to a service named Supportive Care. So, in the views of these colleagues, the name Palliative Care appeared to be an obstacle, a barrier to a referral of patients to our team.
When we asked them their perceptions, their perception was, in 23% of the cases, they found Palliative Care name as a barrier as compared to very few for Supportive Care. Most of them felt that the service name was synonymous with hospice. They felt also frequently that the name could decrease hope. And that might be one of the reasons why they did not want to refer early and they also felt that supportive care were more associated with side effects of chemotherapy.
They felt distress in the patient and family if the patient was referred to Palliative Care and even the clinicians felt some level of distress, not high, but some.
They generally found that the service was very useful, was very, very useful, both medical oncologists and mid-level providers.
So, the conclusion was that "Supportive Care" might help, using that term for the outpatient services, and the mobile teams might help access patients earlier. Now, no matter what we do in the hospital...
...it cannot replace the quality of what the patient can get at home.
Now, of course what the patient can get at home will essentially depend not so much on the patient because the patient will need to spend a lot of time in bed. It will depend on the family around that patient...
...and when home is not very good, then home might not be the best place.
And one of the big dilemmas in palliative care is where should the patient receive care not based on...
...the financial issues, but based on the distress issues. So, the balance between where the patient should be should be based on: distress will always require inpatient services in acute care facilities and/or palliative care services. Once the distress gets better, there are two situations; high support, a good home, good financial status and family around, home sounds great. None of that present, then some other setting, the inpatient hospice, the nursing home, the continuing care facility are the best alternatives for those patients.
At Anderson, we have a Palliative Care Unit, an Outpatient Center, and mobile teams that will go and see patients wherever they are.
Now, ideally, as the disease progresses and the curative options decrease, the palliative options should increase. Now, that is not always the case.
And, in this young patient with metastatic triple negative breast cancer, the patient was admitted to a Phase I trial and we were consulted pretty well the first day the patient came to the institution and we maintained follow-up during the whole course of the treatment increasing our involvement in the care near the end of life.
In the case of this patient who came to MD Anderson with advanced disease, multiple comorbidities and was not eligible for treatment, the patient was referred to us by the primary team, the first day the patient showed up at the institution and we maintained care of this patient.
In the case of this patient, we maintained shared care of the patient who came for Phase II treatment. And basically the patient was consulted to us also the first day the patient came to the institution. And there were a number of periods of follow-up until the patient returned to her community.
And finally, in the case of this patient, we had more or less interaction until the patient became a survivor, went home, and was followed up by the primary doctor.
So, we get different patterns of practice and different patterns of referral to Palliative Care and that leads to the question about how could oncology and Palliative Care Teams interact. I am very interested in this area because I am a medical oncologist and I have a strong belief that this is a very healthy interaction.
When a patient is referred to a medical oncologist, there is an enormous amount of work that needs to be done around the cancer care. Some of this work starts even before the patient is ever seen and is maintained during the course of the illness. But, as I showed you before, this patient brings a significant package of physical and psychosocial distress altogether. So, there is a cancer care and the palliative and support care package in the same patient. In the solo practice, the oncologist needs to address those two packages. It is a considerable effort. It has a considerable time demand and, unfortunately, right now in the United States, the vast majority of oncology programs do not include a single day [of] training in supportive and palliative care and so oncologists are not always well prepared to deal with these issues.
The alternative is to provide the cancer care and then to consult a large number of disciplines to address all those supportive aspects. The problem with that is that it involves a tremendous amount of time, effort and financial cost. And it also lends itself to all kinds of miscommunications between all those different specialists that have been requested.
The model we use a lot at MD Anderson is the interaction between the oncologists and the supportive and Palliative Care Team for the purpose of managing the supportive care package. When it is necessary to involve other disciplines, because the complexity of the situation requires so, Psychiatry, Pain, Interventional Radiology are involved. But, in most cases, this interaction is highly effective.
So, you can have different ways of putting together this package. Which is the most effective from the perspective of the Oncologist?
In some cases, the solo practice might work well when there is time and training.
In some cases, the Palliative and Supportive...
...and the Congress approach is probably not in the best interest of the patient and family, medical oncologist, and all those consultants that are involved.
Now, the concept of a Palliative care referral reducing hope has been something that has concerned us because these conversations need to take place. And, basically, if one considers that comfort measures reduce hope and that treatment of the primary tumor maintains hope that might not work very well when we know quite well that these regimes are not going to result in curative results or very large life prolongation.
So, we came up with these goals of CAR, not goals of care, but goals of car. And we thought about how patients plan their car.
And basically, if I might buy car and the patient buys a car and they assume that absolutely nothing will happen, there will not be any need to wear seat belts, to look for air bags, or even to buy insurance, because nothing bad will happen. So, the goals are clear, are going to work, going for holidays, those are fair goals. The problem is that if I expect that absolutely nothing will happen, this would be hopeful, but very unrealistic.
Most of our patients buy a car with the same goals, but they also understand that occasionally things might not go well and that making plans and discussions might not only be smart, but also might enhance the pleasure of the trip.
So, when a patient has this type of goals for their cancer, and the idea is that there is no need to make any other alternative plans because nothing will happen, this might result in a more uncomfortable trip. But also these worries will have a trend to appear no matter how much I try to deny them. And they might really cause depression, distress.
So, having the same goals, but thinking about maximizing comfort and also discussing what might happen if for some reason this cancer does not respond to the treatment, would make the trip more enjoyable.
So, we believe that a strong interaction between the primary teams and the supportive and Palliative Teams enhance the quality of life of our patients, like this patient, enhances the quality of life of their families and, perhaps more importantly, it improves the quality of working life of the cancer care teams and therefore it allows us to focus as a team in doing a better job for our patients and families. Thank you very much.
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