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Dr. Jack West is a medical oncologist and thoracic oncology specialist who is the Founder and previously served as President & CEO, currently a member of the Board of Directors of the Global Resource for Advancing Cancer Education (GRACE)


Is Palliative Care “Giving Up”? No, It Can Actually Improve Both Quality of Life AND Survival
This is an oldie but goodie article from GRACE's archives. Enjoy!
Howard (Jack) West, MD



GRACE member and forum moderator Catharine started a forum thread and conversation that followed a great link to a difficult but thought-provoking article written by Dr. Atul Gawande in the New Yorker on the subject of the transition from aggressive anti-cancer therapy to a focus on palliating symptoms and focusing on quality of life. This is one of the most difficult topics in oncology, for patients, doctors, and society as a whole to confront.

While I invite and strongly encourage people to read the article (though you need to have the right mindset to tackle it) and participate in the discussion on that thread, there is one topic that we haven’t touched on thus far in the thread that is an interesting point covered in the article. Dr. Gawande refers to a study in which the insurance company Aetna allowed patients to receive palliative care without them being disqualified from receiving further anti-cancer therapies and found that they fared much better in many different aspects, including ability to communicate about their diagnosis and end of life wishes, and they were far less likely to end up having many visits to the emergency room and admissions to the hospital than people who had to choose between focusing on symptom control and managing their cancer proactively.

This concept is remarkably similar to a presentation at this past American Society for Clinical Oncology (ASCO)Annual Convention, in which Dr. Jennifer Temel and colleagues at Massachusetts General Hospital compared patients who had palliative care integrated early in their treatment to patients who were referred for palliative care after they had exhausted anti-cancer treatments. Dr. Nathan Pennell and I discussed this study, among others, in a recent webinar in which we reviewed ASCO highlights in lung cancer, noting the very striking findings. Here is the transcript and figures from our discussion several weeks ago of this presentation:


Dr. Pennell: I think that this is one of my favorite presentations from ASCO, and this is something that you normally do not see in the oral presentations of the lung cancer section at ASCO, which is a trial of palliative care in lung cancer patients. Jennifer Temel is a lung cancer oncologist with a focus in palliative care who designed this randomized phase III trial to try to propose a new potential care model for patients with lung cancer, and really my guess will be that this would be applicable to almost any patient with cancer.

If you look at what Dr. Temel considers the current care model, and I don’t think I can argue with this, true palliative care, specialty palliative care is typically only instituted once the patients have already exhausted their potentially curative or life-prolonging treatments, and patients are transitioned into hospice and symptom control, somewhere relatively close to their death. What Dr. Temel is proposing as a better model is starting symptom control and active palliative care at the initial time of diagnosis, and doing it in parallel with the curative and life-prolonging treatment allowing a smoother transition near the end of life and potentially improving the quality of life throughout the course of their illness.

This particular design was very straightforward, 150 patients. These were consecutive new consults at Massachusetts General Hospital, were randomized to either standard care, which is meeting with the palliative care team only if their doctor requested it, or if the patient and family requested it, or in the experimental care arm, patients in addition to meeting with their oncologist and getting their treatment plan would also meet with a palliative care team within three weeks of signing consent, and then met with them essentially once a month afterwards.

Now, one of the criticism of the study is that there was really no firm description of exactly what the palliative care intervention was, because it was up to the team to devise an individual plan for each patient. However, in general, they always tried to help improve the patient’s understanding of their illness and education about their treatment goals. Obviously a big part of it was symptom management: dealing with pain, pulmonary symptoms, fatigue, mood is a big issue with depression and anxiety, helping the patients with decision-making, especially when it came to talking about transition near the end of life, and just helping the patient and family coping with their life-threatening illness.

In fact, on the standard care arm, 87% of patients actually never met with the palliative care team, so although this was billed as early palliative care versus standard palliative care, in fact, it was really more like early palliative care compared to no specific designated palliative care. And just to show that it also was quite effective, most of the patients had at least three or more visits with the palliative care team. The effect on psychological distress and depression was significantly better in those with the early palliative care intervention, was much less than in the standard arm, although there didn’t appear to be much of an impact on anxiety.

The primary outcome of this study was improved quality of life, using something called the FACT-Lung or the Trial Outcome Index, which is a subset of questions from the FACT-Lung. This is a very well-established, very well-validated tool to measure quality of life, and there was a statistically significant improvement in the quality of life as measured by this tool, both in the TOI and in the FACT-Lung. This magnitude of benefit is what is considered to be a clinically significant improvement in symptoms as well, so most of this is symptoms when we’re talking about quality of life.

Another thing that is something we as physicians and as the health care system need to pay a lot of attention to is quality of care at the end of life. So what ASCO defines as poor quality care at the end of life? Patients who die without being referred to hospice or who are enrolled in hospice in less than or equal to three days before death, or who are given a chemotherapy treatment within two weeks of their death — this is considered to be overly aggressive care.

What Dr. Temel’s study showed was that the early palliative care team had a statistically significantly less aggressive end of life care, with only 33% of patients having one of these measures, versus 54% of patients in the standard care arm; also with fewer admissions to the hospital, more days on hospice, although again only 11 days on average on hospice, I think is pretty poor; and more patients had a documented resuscitation preference, so that their wishes on what to do when they were dying was upheld.

Now, here is a slide that was a bit of a shock and was kind of thrown in at the end of the talk.

Apparently, the people at MGH were also surprised when they saw this. This is the survival curves between the two arms. This is not something that was originally designed into the trial but was looked at kind of on a whim and turned out that there was a statistically significant greater survival in the arm that received early palliative care compared to those who received standard care with 11.6 median of months compared with 8.9 months in the standard care arm which was statistically significant.

This was not a planned analysis, and I don’t know that there is a terrific underlying rationale for why this might be true. According to Dr. Temel, there were no differences in utilization of chemotherapy or lines of therapy between these two arms. We do know that patients who are depressed seem to have a worse survival, so perhaps treatment of symptoms and treatment of the mood disorders might have allowed patients to get more effective treatment and to do better. But this is certainly very intriguing if this is true, because this is a completely non-toxic intervention.

So my conclusion from this is that I think if you have access to a palliative care team, which is not actually widely available in the community, based on this study I think it would be very reasonable to consider getting them involved early on in the care of your patients, because I think the quality of the life of the patients or symptom control was clearly better when these professional symptom control experts were involved. This is a very resource-heavy strategy: obviously not just the physician themselves, but also an entire team of palliative care specialists need to be involved. This is not something that is necessarily financially viable in a lot of places. But there really is no downside to it if you already have it. From a research perspective, I think it should be replicated again, probably in a multi-center setting, because this was only done at one spot.

And the other thing that’s missing is really detailing exactly what they did. If I want to go out now and have my palliative care team do something that’s going to potentially impact these patients and even potentially their survival, it’s unclear to me exactly what I should tell them they should be doing based on this. So it’s a little amorphous, and hopefully the final publication will have more details about this intervention. Jack, what did you think?

Dr. West: I thought it was really impressive and surprising. I agree it was puzzling — I mean, nobody can really provide a good explanation. I would have thought that perhaps if people were not getting detrimental therapies when patients were too ill to handle them, going beyond that point could be harmful, but apparently that wasn’t really what the evidence suggests. The patients on early palliative care didn’t receive less treatment, at least not significantly so.

It’s a not large study, and it’s from a single institution, but it’s extremely provocative in showing that there’s certainly no penalty for this and that we are probably not doing a great service by creating some gulf between what we consider to be the main conventional therapy that oncologists do and then a transition to supportive care being some line in the sand. This suggests that they should really be intertwined, and perhaps just attending to things like bowel care and pain control and all these other things that are symptomatic are actually good for a person’s physiology, too. But there’s certainly a lot more to be learned about it.

Dr. Pennell: Yeah, we talk about how in addition to giving chemotherapy, our job is also to provide best supportive care, and in fact I think many oncologists don’t provide the best supportive care because they probably don’t have time. In a busy private practice, you see a lot of patients, and you don’t have a lot of time to sit and address the patient’s mood, how are they coping with it. You might miss that they’re constipated or that their pain is not as well controlled as it could be.

And while all of us would like to think that we are good at symptom control, that isn’t really our main focus when we’re talking to patients, and having experts who are doing nothing but focusing on that aspect of thingsis great if you have something like that available. And if you don’t, maybe paying a little more attention to that aspect of things could be beneficial.


13 Responses to Is Palliative Care “Giving Up”? No, It Can Actually Improve Both Quality of Life AND Survival


    Simon54 says:

    Thanks for this discussion. As I read it, I found myself anticipating the ‘surprise’ of a survival benefit! Given that a third of the palliative care arm still received ‘aggressive’ end of life care and that time with hospice was still limited, perhaps there is still more potential for benefit here.

    Dr Pennell’s comment on the onc’s point of view is interesting. In retrospect, I think that through the first line of chemo my onc and I were effectively complicit in downplaying side effects. We both were biased towards wanting the therapy to be working, and I certainly didn’t want a less aggressive dose. I remember him saying “How are you feeling now – 100%?”, which was a bit of a daft leading question, really! Time with the onc is indeed limited, and it maybe takes skilful questioning to get beyond both the patient’s and the doctor’s wishful thinking.


    ts says:

    Thank you both for your comments and presenting this study.

    I have a suspicion that patients who regularly attend a good group might also show better median survival and QOL? This can address mood, coping skills, and side effects – and the benefits of pain control as well other pharmaceutical assistance. You still need a doctor for the Rx, but hearing a positive spin can make you more open and aware.

    The question is, how to tell a good group from a bad one (or does it matter?) Even within a hospital or health care facility, it can be a very efficient use of resources with perhaps, a quantifiable benefit.


    Terryl says:

    Perhaps one explanation could be that managing symptoms more effectively decreases that all encompassing stress that comes with a terminal diagnosis, both physiological and psychological, as demonstrated in the graph of the effect on psychological distress ( aka STRESS in my book) Stress is known to effect our health in so many ways. Decrease stress leading to improved response, and a slower decline. Just a thought…


    kej says:

    Dr. West and Dr. Pinder,
    Very interesting trial, it puts things into a new perspective.
    Thanks also for raising the question concerning “giving up”. As a caregiver – and I can also speak for my husband – palliative care definitely equals giving up. Not that there might not come a time when this is the adequate thing to do, but being told at the very first meeting with the doctors that they would not even try to cure, was devastating to us and we decided to have no cooperation with the oncologists, but just take the chemo, because here, there are no private hospitals to turn to, so if we wanted treatment we had to take what they offered.
    It has been 6 months now and I think I know now what the real provocation is: it lies in the fact that as a patient you meet a person in a white suit telling you “I know your fate and do not ever think that what you can come up with will change that. Face it, you will die. Here are the contact details of the councellor, so you can get used to it.”


    Catharine says:

    Dr. West – Thank you for posting and thanks to Dr. Pennell for the initial discussion.

    Dr. Temel’s study is very interesting and, in its way, encouraging. I would certainly like to see the study replicated at more locations, with more description/standardization of the palliative care intervention, as suggested. I wonder if such a study is underway somewhere.

    - Catharine


    Dr West says:

    Thank you all for your thoughts. I don’t know that anything like this is being done, but I think it marks a real step forward as cancer programs try to establish priorities for limited resources. This kind of work can only help to make us prioritize support groups and a focus on palliative care, whether by dedicated specialists or by the regular oncology team allocating more time and effort to these issues.

    I think that for patients and caregivers, too, we have such a long way to go in terms of all recognizing that quality of life and quantity of life aren’t mutually exclusive. Palliative care shouldn’t have a stigma of defeat associated with it, and I hope we see greater acceptance of these efforts as important research that can make substantial contributions for cancer care.


    Laya D. says:

    Dr. West – -

    I think that the challenge for treaters is to figure out a way to give this advise to their patients and their patient’s loved ones without sounding doomsday and pessimistic. It’s all in the delivery. . .



    myrtle says:

    I was pretty excited when I listened to your discussion of this study and I was not at all surprised by the greater survival shown in the group that received the palliative care. When I was diagnosed, it was as if I was suddenly thrown into a world of pain and drug side effects that I had no knowledge of and I had no ability to understand that there might indeed be something to lessen the treatment and cancer effects. I just thought I was suffering the unavoidable aspects of dying. Now I know that much of the misery could have been lessened had someone been there to address the physical and emotional aspects of the disease. it seems logical that less pain and stress would lead to increased survival. I hope one day it becomes common for this to be part of the care fro everyone diagnosed with a late stage cancer and not seen as a separate and either/or choice. Thanks so much for sharing this interesting study and I hope along with Catherine there will be more to come.


    Dr Pennell says:

    I found Kej’s comments particularly poignant, and I think this illustrates what may be the most significant impact of “early, integrated palliative care”: making it routine and removing the stigma of palliative medicine. Imagine meeting with your oncologist who explains how you will be fighting your disease and what to expect, and then introduces a physician who will be aggressively managing your symptoms and helping to assure that your QOL is a good as possible while you undergo treatment. Oh, and by the way, this supportive care may also help you live longer. Who would say no to that?


    kej says:

    Thanks, Dr. Pennell
    for reflecting on my perception and my experience.

    I would definitely have welcomed a meeting with someone who would offer pain and or symptom control. It would have released me of a tremendous burden. What made us freak out was the ruling out of survival.

    During our journey it has seemed impossible for doctors to express any belief that it is possible to survive stage IV disease more than a few years. It also seemed crucial for the doctors to make sure that we realized that stage IV is fatal and gave up any hope for a cure. I do not think I will ever understand why.
    With that experience, I cannot imagine at this point that I will ever trust leaving my health and life or that of any of my dear ones to any doctor or any hospital. At least it will take very looooong time for me to get my faith back.
    This was why we decided after the first meeting that my husband’s role would be to just roll up the sleeve and take the chemo offered (strange word because it was take it or leave it, no dicsussion of options) and then my role would be to find alternatives, trials and treatment options in other countries.


    LCSC says:

    Interesting. thank you. I think so many others would benefit from reading this post- tweet it!


    rachelk says:

    The results of this study do not surprise me at all. Perhaps the palliative care team helped the patients with decreasing anxiety and stress by showing the patient support and caring which has been shown to be beneficial to fighting cancer (perhaps beneficial at stimulating your immune system etc). I would like to provide a link that discusses this type of rationale and would love to hear from oncologists on how they feel about this particular PhD/MD’s approach:
    Natural Defenses in Preventing and Treating Cancer
    by Dr. david Servan-Schreiber (author of Anti-Cancer a new way of life)
    I am not sure why oncologist do not try to treat patients in a multi-disciplinary fashion (i.e. with conventional medicine, integrative medicine, stress management)- I don’t think this type of approach would provide a false hope for patients but if anything it may make the patient feel less hopelessness and more in control of their health (control over their diets, physical bodies and mind is a powerful feeling). Incorporating a healthy diet and exercise plan should be part of oncology because if anything, in the end it will make them healthier in general, feel better and stronger can only help one deal with aggressive treatments . It escapes me why there is a lack of this type of support and in fact I see an opposite trend in cancer facilities actually occuring where patients in waiting rooms are being fed cookies and sweets, and their take home pamphlets are advising patients to eat “milk shakes, cookies, and desserts” for food choices as if fat and sugar are good for fighting cancer??? Have you ever read one of these pamphlets? In fact, I asked one of the volunteers in the waiting room of the hospital treatment facility why she was handing out cookies and soda instead of blueberries and greent tea to the patients and she said “I don’t know- perhaps it is cheaper”. It wasn’t a month later that they had green tea on the counter for patients to use! So someone was listening! Perhaps these waiting rooms can have Yoga on TV instead of the grim local news to help with mental focus??? You may be laughing at these suggestions but i am dead serious- There is scientific merit in this man’s approach and I hope it starts catching on in oncology practices.


    JoeSperrazza says:


    You make some good points. I, too, am a fan of Dr. David Servan-Schreiber book, Anti-Cancer and have recommended it to those I know with Cancer. Not only is it well referenced, but it has a very uplifting message.

    I do know that some cancer centers do treat patients with the multi-disciplinary approach you mention. My wife was initially treated at Cedars-Sinai Medical Center in Los Angeles, and had a “team” approach that included a Medical Oncologist, lead Nurse, Nutritionist, and Social Worker. All had different (and wonderful) contributions to my wife’s care and my state of mind.

    I think it is pretty cool that your comments about healthy snacks may have contributed to a change at your center. I also find your thoughts about soothing television selections interesting. I think the last point may be a challenge to implement. Rightly or wrongly, TV is both a big part of U.S. culture and very individualized. For example, one reliable way for me to completely relax is to watch reruns of the old “The World at War” British documentary on World War II (I’m well read in History, so I don’t have to pay attention – I know how it ends plus I find the accent of the announcer to be very soothing). By contrast, my wife calls that the “All World War II Channel” and would rather watch cement harden (OK, she’d really rather watch CMTV). Some folks are soothed by news channels running, others repulsed.

    As Dr. S-S would say, “Keep drinking green tea”!

    Best wishes,

    Joe S.

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