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

July 30, 2010 - 4:26 pm email to a friend

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Dr West

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:

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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.

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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.

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