Alive but Suffering: Palliative Care and Cancer
By Daniel Tippens
There is an age-old philosophical question that dates back to the ancient Greeks: Is it better to live longer, or to live shorter with a higher quality of life? To be clear, agreeing with the first position doesn’t mean you don’t care about quality of life, it just means that you value quantity of life more. I suspect that The United States population has quietly endorsed an answer to this question – manifested in the way we fund cancer research – and it is to our own detriment.
In 1971, Richard Nixon declared a war on cancer. He said:
Members of the Senate, Members of the House, ladies and gentlemen:
We are here today for the purpose of signing the cancer act of 1971. I hope that in the years ahead that we may look back on this day and this action as being the most significant action taken during this Administration. It could be, because when we consider what cancer does each year in the United States, we find that more people each year die of cancer in the United States than all the Americans who lost their lives in World War II.
This shows us what is at stake. It tells us why I sent a message to the Congress the first of this year, which provided for a national commitment for the conquest of cancer, to attempt to find a cure. (1)
With the signing of the National Cancer Act, massive governmental funding was devoted to cancer research, with a particular emphasis on Nixon’s last word in this quote, finding a cure.
Today we broadly recognize two kinds of cancer research – that devoted to increasing life span and that devoted to palliative care. The first is aimed either at curing a patient of the disease or extending his or her life, while suffering the disease. Curing the patient can take two forms: prevention — which includes things like vaccines that are administered before one encounters a pathogen and which sensitize the immune system to that pathogen, preventing it from developing a foothold in the body – and intervention, which include things like antibiotics, which are ingested after a disease has set down its roots, and are tasked with destroying the pathogen in question. Treatments aimed at extending life are those whose goal is not to cure the disease, but to afford the patient more time, while enduring it. For the most part, radiation and chemotherapy figure into this category, as they typically don’t cure the cancer, but stunt its ability to overcome the patient.
Palliative care has the explicit goal of alleviating the symptoms of a disease, as opposed to increase a person’s life span. It includes things like physical and psychological pain management, but may also address social and logistical challenges, such as the loss of autonomy. Most often, palliative care is associated with the terminally ill, who need relief from their symptoms as they exit the world. But it need not be. Consider how people are now able to live a “full” life with HIV/AIDS. Indeed, HIV frequently doesn’t kill a person even when that person is diagnosed young. However, these patients may need psychological or social support given the persistent stigma attached to them, and their difficulty in finding long-term partners. Such support would fall under palliative care’s scope.
Different values seem to underlie these two fields of medicine. One is motivated by our wanting to live longer, while the other reflects our desire to live with a higher quality of life. So we have a rough-and-ready way to determine what our answer is to the traditional philosophical question. If we emphasize research on increasing life span as opposed to our investigations into palliative care options, our answer is revealed. And if we recall Nixon’s last words, regarding the government’s decision to fund cancer research — “to attempt to find a cure” — one can only observe that this emphasis has not changed. Indeed, it may have even become more entrenched.
In 2008, “…fewer than 1% of grants funded by the National Cancer Institute, National Heart, Lung and Blood Institute, National Institute on Diabetes, Digestive and Kidney Diseases, and the National Institute on Aging were awarded to investigators performing palliative medicine research.” (2) I looked into the current distribution of funding at the NCI, the largest government-funded cancer institute, and under a charitable definition of palliative care, found that 2% of research money goes into palliative care, while 98% is directed at increasing life span. (3) Our philosophical position, it would seem, is quite clear.
Could it be that our palliative care system is doing so well that further funding isn’t needed in this direction? Any such inference is seriously mistaken. In 1997, Oregon implemented the Death With Dignity Act, allowing terminally ill patients to receive physician assisted suicide (PAS) under certain conditions. Since its inception, an annual report has been released, documenting things like the numbers of people who opt for PAS, the most common reasons for choosing suicide, and which diseases typically afflict those who die with dignity.
The most frequently cited reasons, and patients were allowed to choose more than one, were:
- Less able to engage in activities making life enjoyable (~90% since 1997)
- Loss of autonomy (~92%)
- Loss of dignity (~79%)
- Losing control of bodily functions (~48%)
- Burden on family/friends/caregivers (~41%)
- Inadequate pain control or concerns about it (~25.2%)
- Financial implications of treatment (~3%) (4)
The majority of these reasons (except #7) are precisely what palliative care is supposed address. But the more disturbing part is that since 1997, 77% of all PAS patients had cancer. Even worse, over 90% of them were enrolled in hospice care. To be clear, the number of cancer PAS patients aren’t that high (about 30 per 10,000 deaths). But I see this as similar to a well-known war fact: for every soldier killed, there are many wounded. For every cancer patient who chooses PAS, who knows how have killed themselves independently or are in terrible pain, contemplating their own death.
Further, these are patients who opt for physician assisted suicide, not euthanasia. The difference between the former and the latter traces back to the ethics of doing harm vs. allowing harm. In physician assisted suicide, practitioners supply the patient with the means to kill him or herself (allowing harm). Euthanasia takes place when the medical expert actually administers the fatal drug to the patient himself (doing harm). I don’t know about you, but I find that there would be more psychological barriers to killing myself than having another do the deed for me.
I came across a quote from one study that, at first, seemed to alleviate my concerns a little bit, until I thought about it more. Now I see it as a cold reminder of the state of palliative care.
Today, specialists in palliative care believe that if all patients had access to careful assessment and optimal symptom control and supportive care, the suffering of most patients with life-threatening illnesses could be reduced sufficiently to eliminate their desire for hastened death.(5)
This may seem like a promising claim on a cursory glance, but take a look at the last part. Is our goal really to just eliminate the desire for a hastened death? Certainly not. The goal is to get patients to enjoy living, to have meaningful interactions with their families, and to feel at the very least somewhat normal for as long as possible. That most people who opt for PAS have cancer and that their reasons for wanting to die are precisely those that palliative care is supposed to attend to serves as an indicator of the grim state of the current quality of life of cancer patients.
There are other indicators as well. Consider medicinal marijuana, which is an increasingly appealing option for cancer patients. We are quite literally using a street drug to manage the symptoms of cancer. To me, this demonstrates the primitive state of palliative care. Don’t get me wrong, I’m not saying that it is wrong to use medical marijuana. What I am saying is that its use is evidence that palliative medicine remains woefully undeveloped. Just as our goal isn’t to simply get people to refrain from killing themselves, our goal also isn’t to keep someone in a state of being constantly stoned. We want patients to be capable of a relative state of normalcy, so that they can interact with their family and friends and retain as many of their mental faculties as possible.
It’s definitely not the case, then, that palliative care research needs no additional funding. However, perhaps another argument can be made for why we are — and should be — funding research devoted to the increasing of life spans, at the expense of palliative care funding. If you cure cancer, you get the benefit of increased life span, along with the benefits of palliative care. So we have straightforward, utilitarian reason to fund curative research over palliative.
The problem with this argument is that it loses traction over time and can be turned on its head. The more time that passes without a cure, the more patients suffer in enduring the disease. At a certain point, when little progress has been made in finding a cure, and when there is no reason to believe a cure is in sight, the cost to patient well-being outweighs the potential benefits of continuing to preferentially fund curative research.
At one point we did have good reason to buy into the utilitarian argument. In his Pulitzer Prize winning book, The Emperor of all Maladies: A Biography of Cancer, Siddhartha Mukherjee points out that expectations to find a cure were extremely high, when Nixon signed the National Cancer Act. This optimism was due to a ubiquitous belief, informed by what were then-recent historical events: If we have the right motivation, pouring enough money into the hands of our greatest minds will lead to the solution to any and every problem. This strategy had successfully put a man on the moon in 1969, created the world’s most deadly weapon at Los Alamos National Laboratory, during the Second World War, and arguably had purchase on the development of the polio vaccine in 1952. America felt unstoppable, and given these historical events, it seemed a reasonable thing, with regard to cancer, to shoot preferentially for a cure.
Unfortunately, cancer has been a striking counterexample to the aforementioned belief. The term ‘cancer’, we came to find, doesn’t pick out a single disease, but is rather an umbrella term for different diseases that share only a superficial appearance. We always see a tumor and metastases, but the driving mechanisms may differ widely between cancers. When we used to say that someone had lung and not colon cancer, we were using the organ to denote the location of a pathology, like saying that somebody has a cut on their arm instead of their face, as opposed to denoting a difference in pathological kind. Fortunately (or unfortunately), we know better now. There are countless kinds of cancers. It’s not just that we can count the numbers of organs on our body and say that there is a cancer unique to each organ, we now have good reason to believe that there are even multiple forms of lung cancers, breast cancers, brain cancers, etc., and each one of these subtypes is a very different beast from its brothers and sisters.
Worse still, we have discovered that we are quite literally battling evolution, primarily natural selection, at a cellular level when we attack cancer. Have you ever wondered why patients whose cancer recurs typically have fewer treatment options than they did when they were first diagnosed? A big part of the reason is that their cancer has developed resistances to the therapies they were previously administered. If a patient was given chemotherapy, the chemo likely eradicated much of their tumor and perhaps some metastatic tumor cells, but if even one cancer cell survived, it’s likely that it had a resistance to the treatment. When that cell divides and gives rise to a new tumor, all of the constituent cells are likely to be resistant. Our battle with cancer cells is a constant arms race – we attack, it develops a defense, we develop new weapons, and it fortifies itself further. The patient is the one who loses this war, on all of its fronts.
For these reasons and many more, progress in curative research and increasing life span research, conceived more broadly, has been very slow, and doesn’t show much indication of picking up its pace. Between 1995 and 2000, the 5-year survival rate for all cancers diagnosed was 64%. (6) Between 2005 and 2011, the 5-year survival rate was 69%. (7) In ten years, we crawled a mere .5% increase in 5 year survival rate per year. Also, as the American Cancer Society is keen to point out, improvements in survival rate need not suggest progress in treatments against cancer. (8) Survival time increases may be due to increases in screening rates and other screening-related factors. Not to mention, this is just the 5-year survival rate. Cancer is still very much with us. It is the second leading cause of death in the United States, and in 2016 an estimated 1,685,210 will find out they have cancer, and 595,690 will die of it. (9) For the 98% of billions of dollars we are throwing at increasing life span research, this should all be shocking as cancer patients are without a sense of dignity, autonomy, and an acceptable quality of life.
To me, it seems clear that the original utilitarian argument has been turned on its head. It is no longer rational to believe that the most good will come about from preferentially funding increasing life span research. We are, in fact, doing more harm than good.
There are additional, independent arguments for funding palliative care research. First, it is generalizable. Mental and physical pain management research in cancer can be applied to other illnesses as well, and we will always be facing illnesses that threaten our quality of life, in addition to our lifespan. The history of human health confirms this. Whenever we have surmounted the most prevalent biological killer, a new one has popped up. Sure, our lifespan increases somewhat, but we don’t become immortal. Even if we were to cure cancer, another new disease would pop up, or old diseases would become the bane of our live-long-and-prosper existence.
What I am arguing, then, is that we seem to ignore palliative care, because when it comes to medical decisions, we care most about living longer. This is manifested in America’s current stigmatization of health-compromising behavior such as smoking or eating gratuitously. If you ride a bike without a helmet, you’re a fool. How could you risk your health for something like feeling the wind in your hair or for the pleasure of a nice smoke? The underlying logic is that quantity of life matters more than quality – that we should live as long as possible, rather than enjoy ourselves, while alive. It is an accident – though a very ironic one — that as it happens, precisely this way of thinking is what causes us to neglect palliative care.
I don’t mind telling you that I think it is better to live a shorter life, with a greater quality of life, though I won’t argue for this here. I do want to suggest, however, that our skewed interest in living longer needs to be tuned down, in order to make room for living better. It’s not that we should stop funding increasing life span research altogether, but that much we should spend more than a measly 1% or 2% of our medical research dollars on palliative care. And if that means dipping into the money we are spending on increasing life span research, so be it..
I would like to thank Warren Ersly for his useful comments on this paper.