Dr. Eduardo Bruera is a true pioneer in the field of palliative care.
Bruera founded the first academic fellowship program in palliative care at the University of Alberta in Canada. He later founded the Department of Palliative, Rehabilitation and Integrative Medicine at the University of Texas MD Anderson Cancer Center in Houston where he is now department chair. This department has emerged as the largest clinical and academic palliative care program in the world.
He also is credited with helping to develop the Edmonton Symptom Assessment System, a questionnaire used to rate the intensity of nine common symptoms experienced by patients. The system is now used in medical institutions globally.
Bruera has been instrumental in establishing numerous palliative care programs in Latin America, India, and Europe, and has held leadership roles with the World Health Organization and the Multinational Association of Support Care in Cancer.
In this interview, Palliative Care News sits down with Bruera to discuss the landscape of palliative care and what he sees for the future of the field.
What drew you to the palliative care field?
I am trained as a medical oncologist. When I trained, we focused on the management of cancer. Soon after I started working as a fellow in oncology, I realized there was a lot of suffering in our patients that we didn’t know how to manage.
I was drawn toward alleviating the suffering of the person rather than the fascination of cancer and its treatment. I gravitated toward palliative care at that time.
It was hard to find jobs in an area that didn’t exist. I wrote letters and sent applications and found a positive response from a director of a cancer center in Edmonton, Canada, who invited me to come there for a year to see what we could do.
I stayed there for 15 years and we started working in the area of palliative care and researched better ways to serve patients and their families. During this time, palliative care started to progressively become a specialty so I was able to see a lot of that before I came to the United States in 1999.
When you look at today’s palliative care landscape, what needs to change?
There are a couple of very big challenges:
One of them is the recognition that you need structure in academic centers and big hospitals and then apply the palliative care processes to that structure and change the outcomes that we know can be met.
To me, the challenge right now is implementing the knowledge we have already demonstrated. There are too few palliative care units in the United States to address the acute suffering of patients in inpatient facilities.
Cancer and other progressive diseases are not equal opportunity diseases. The amount of physical and psychosocial suffering they cause varies from person to person. It is my hope that all facilities that encompass intensive care units also will have a palliative care unit. Patients die in those facilities and usually the worst deaths happen there.
We need outpatient, independent care facilities for the delivery of palliative care early in the trajectory of incurable progressive diseases. There are not enough, and a lot of the work is being done inpatient. Inpatient is too late; patients are already too ill and have missed weeks or months of potential care.
During that time, you could have managed their symptoms and improved their function, improved their nutrition, improved their well being and discussed what might come up later.
If you have independent centers, that’s what you do — you have nurses who spend time with the patients and assess how they are doing, you have physicians who are board certified and trained, counselors and chaplains who are readily available to see the patient during that type of care.
It is sad to see that we still don’t have enough academic palliative care programs in the nation. The biggest universities still have a token or no academic structure, and that is necessary because the knowledge emerges from those places. The new generation learns there.
In the acute care environment, the CEO, the president of the hospital, and the leader of the cancer center are great targets. In the outpatient area, the one who runs the outpatient facility, be it a cancer center or a hospital, is a great target. On the academic level, the dean is a wonderful target.
I think it is crucial to personalize to those individuals and educate them about what they may be missing and what the next generation of physicians and patients may be missing because we’re not like any other area of health care.
What are some of the barriers that exist between palliative care and the patients who need it?
The main barrier is a misunderstanding by executives and program directors about what palliative care is capable of doing. They don’t know because they have never trained in the environment.
We need to teach them that the alleviation of human suffering is the main purpose of everything. You can eliminate suffering by killing the cancer but sometimes you cannot do that. Even if you do cure the cancer, there might be a lot of suffering on the way. Elimination of suffering is the reason we exist.
There are very few domains where we can eliminate suffering and save huge amounts of money. If a patient comes to me with a lot of suffering, I will use whatever it takes to eliminate that suffering. That is enormously costly and doesn’t address the suffering or preparation for the end of life that is coming.
The doctor uses what they have on hand and that costs a lot of money and that doesn’t reduce the suffering. They do it with the best intention; that’s what they are trained to do. They are not always aware that there are alternatives with management of medications, counseling, communication, they just don’t have the body of evidence or access to the people that do that.
This leads to a misunderstanding about how expensive it is to run palliative care. Most of the time health care is based on the price and the value of what we do to people. Palliative care is extraordinarily effective in saving unnecessary expenses.
If you give another dose of immunotherapy, if you get the patient into the ICU at the end of life, that is very expensive – about ten times more than the salary of the palliative care specialist.
You need to look not at what the doctor will bill but at the expenses the doctor will save. In this world of preauthorization and denials, if these measures are taken that close to the end of life, the third-party payer is not going to pay anyway.
So, this might result in a huge amount of savings for the organization. For some reason, executives don’t understand that. We have opportunities to teach them about the savings that palliative care provides.
The palliative care team needs to be integrated with the oncologists, the cardiologists, and the rest to send patients back and forth … that is incredibly successful in making the patient feel safe. Progressing into the end of life, that reduces suffering and the cost of care.
MD Anderson’s palliative care has grown five times more than the rest of the institution due to referrals by doctors and nurses who have said they want this for their patient. In a burnout environment, we can do tremendous things to alleviate the stress on physicians who are seeing those patients because this is what we do, this is what we know how to do, and we are relieving the suffering of our colleagues who are sending us these patients.
What opportunities for innovation do you see in today’s health care system relative to palliative care?
We need places to allow patients to live in a dignified way when care at home is not possible and the acute care facility is not an option.
As the environment has changed and inpatient hospice care has become rare, if not non-existent in the United States, the idea of having a way to bridge that gap between the acute care environment and home is critical.
Our population is aging, most of the time a patient with a chronic condition will be in their 60s, 70s, or 80s and they will have a spouse that is the same age and if they are able to care for that patient, they will be alone with the patient at the time of death.
They are responsible for administering and assessing medications, doing hydration, and doing movement. That becomes overwhelming for the caregiver. That is the role of that facility, to help the patient feel well and to regain a loving, caring role for that relative rather than a doctor, nurse or occupational therapist role that they never signed up for.
We need to implement these as soon as possible to allow for dignified care in a place where we do not need a lot of MRIs but a caring environment where patients will get a daily visit from their doctor or nurse and access to other teams. That is an innovation we rapidly need in the United States as our population becomes more nuclear and older over time.
We need better ways to alleviate physical suffering. We still aren’t doing very well with pain. We have rudimentary drugs that have been in use for hundreds of years that may cause other problems, such as non-medical use of opioids and death due to overdose or severe toxicity.
We need to do better in managing pain and we need to better to manage fatigue – it is more than fatigue; it is the feeling of a horrible flu and you have difficulty deciding if you’re going to make it to the bathroom or not because you’re so exhausted and achy all over – that is the fatigue that our patients in palliative care go through. It is a devastating symptom. We need better treatments for that.
We need much better treatments for shortness of breath; we need better treatments for delirium when our brains start to fail and we get confused and agitated. We need more research. The federal government has not focused on palliative care, and we haven’t had much support. In general, universities have not been behind all these efforts.
We need teams supported to conduct research so the next generation ends life with less suffering than the current generation. I’ve dedicated my whole career in palliative care to developing these things. I’m sure there are hundreds of physicians who are passionate about these things. Let’s give them the opportunities to do academia, to change the way we are treating suffering, and to make it a priority of the big universities.
In addition to providing clinical care, you also do work on the research and education sides of health care. What are some of the issues you are currently investigating as a researcher?
In my area of work, our team focuses on physical suffering but we also have tremendous interest in how well we are communicating with the patient. What are the best ways to say something? What are the best ways to ask something? It is not just a matter of sitting and talking or sitting and saying you’re going to listen. It is a matter of testing what works.
We’ve shown our cancer patients videos of doctors saying one thing or another and asking which they liked the best. Which doctor was more compassionate? Which doctor was more professional from the patient’s perspective? Which would you like to be your doctor? That type of research gives us not just opinions but data that will support attitudes.
Such as sitting or standing in front of the patient. Such as not using electronic health records during an encounter with the patient so the patient gets your full attention. Such as the style of communication that the patient prefers and the decision making that they prefer from a doctor.
We have been surprised in some cases by the decisions they make. A couple of them have helped us solidify our attitudes, for example on our attire, we have looked at the attire of the doctor and it has no impact on the patient. I have spent my whole career in a shirt, tie, and lab coat and we find that it makes no difference. Patients value other aspects of communications, not so much that I dress in one way or another. Working on communication, developing a disciplined data-based approach rather than the opinions of five or 10 people helps us change our practice.
One of the areas I have personally been passionate about is accessing those people in countries that are less successful than the United States. How do you implement end-of-life care in countries with limited resources and what are the ways in which it works?
The silver lining of COVID was That allows us to penetrate more developing countries so we are using methodologies for discussion of patients, education of local doctors, empowering them and making them feel better.
We already have some data that those methods of using video with doctors makes the quality of life for their patients better. It is so rewarding that we can help someone that we’ve never met, in a country we’ve never been because we can discuss the case and help each other come up with a strategy to help the patient feel better.
What are the most important lessons that you hope to impart to up-and -coming clinicians as it relates to palliative care?
It is not an easy road but it is very gratifying. Alleviating unnecessary suffering – not all suffering because that will never happen but there is a lot of unnecessary suffering. We can have a major impact there.
While it can be extremely gratifying, you need to train yourself. It is potentially toxic. Palliative care, exposure to the suffering of people at the most difficult times of their life, requires training and education … do a fellowship, learn how to do it really well. That will prevent burnout.
Another thing I would like to suggest to those getting into this field, make sure you have a boss that is supportive and prepared to mentor and make your career a success.
The ones who have helped others become an independent success are the ones you want. Work for an employer who is dignifying your work. Tread with care with your boss and employer otherwise there may be some negative surprises even in prestigious institutions where people are doing what you do.
You have been a trailblazer in the palliative care space. What do you see as the next frontier? Where do you go next and what would you like to see for the field at large?
The next frontier is to face the progressive disease and the closure of life that is universal to every human being – not just in care but an intellectual challenge.
We need to know better; we need to approach things with a much larger body of knowledge as professionals but also as a society. The end of life is universal, we are all going to die.
That is the great frontier, that we need to maintain our focus, maintain our societal as well as professional goal of making it that the end of life is normalized. We need to address and eliminate all the unnecessary aspects of suffering — all the denial, all the anger — all that comes with the end of life.
We are flawed characters from birth and our destiny is 100% mortality. I’m at the stage of my career where I have an expiration date but I’m going to hang around and try to do as much as I can because I learned from my first boss in Canada, Neil McDonald, always pitch in until the last day of your job or the last day of your life. Keep pitching in and you’ll never regret that. And I’ll do that.