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.
Endnotes
- http://www.presidency.ucsb.edu/ws/?pid=3275
- http://www.npcrc.org/files/news/Gelfmanjpm2006.pdf
- http://fundedresearch.cancer.gov/nciportfolio/search/SearchForm
- https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year18.pdf
- http://www.cancer.gov/resources-for/hp/education/epeco/self-study/module-14/module-14.pdf
- http://www.cancer.org/acs/groups/content/@nho/documents/document/caff2005f4pwsecuredpdf.pdf
- http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-047079.pdf
- http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-047079.pdf
- http://www.cancer.gov/about-cancer/what-is-cancer/statistics
Comments
47 responses to “Alive but Suffering: Palliative Care and Cancer”
Dan, a nicely written piece but I have reservations partly because of the very nature of your argument which has all the virtues and faults of a particular kind of (or way of doing) philosophy. The arguments are clever, but nowhere near convincing.
It seems to me that when we are talking about issues like under what circumstances life is worth living, it is very difficult to generalize or draw satisfactory conclusions. Not only do different people have different basic intuitions on this, an individual’s views may change as circumstances change.
One of my university teachers (a very worldly and elegant French woman) killed herself with the help of a doctor when she was perfectly well. She was about 70, I think. They made a documentary film about her suicide in which she actively participated. She just didn’t want to experience that inevitable downhill drift. I wouldn’t do what she did, but I respect her. She didn’t have close family. She had led a full and happy life…
I am generally happy with the current focus on searches for cures in medical research. All right, huge amounts of money have been spent on cancer research and the results in terms of practical treatments have been disappointing. We were not to know this in advance however, and nor can we know that some breakthrough cures (based directly and indirectly on that vast body of new knowledge) are not just around the corner. I like the idea that our researchers are aiming high. The hope they provide has to be factored in to any utilitarian calculation.
I suspect that your personal views on quality versus quantity of life are affecting your arguments here, and those prior assumptions need to be more closely examined and clarified.
Dan: Unlike Mark, I think your essay is spot-on. To contiue to spend outrageous sums of money on cures that clearly are not forthcoming and to spend close to nothing on those who are suffering in agony is utterly indefensible, on *any* moral grounds. So, I have no idea whatsoever what Mark is talking about.
I also see nothing here that refelects “personal views.” I see a very well argued, well-written piece. I also see nothing “clever” but instead, something very serious and straightforward in both what it says and how it says it.
Mark: Dan makes it quite clear that what the research shows is that a cure is *not* “right around the corner” and we know it isn’t. Indeed, talk of “a cure” is itself mistaken, if you understand the science behind what Dan wrote. It is also worth pointing out that Dan actually does research in a cancer lab, so I take his word on these things, about which I know next to nothing.
So, while you “like our researchers aiming high,” people are suffering, needlessly, in agony. I’d love to hear a defense of that — especially in light of the scientific realities that Dan laid out in his very carefully worked piece.
Dan:
First, excellent piece. The best you’ve done thus far I think.
Second, do we have comparative data? That is, do we know the distribution of spending on curative vs. palliative cancer research in other modern, industrialized countries. If so, what do they show?
The reason I’m asking is because I wonder whether you may be tapping into some very deep elements of the American personality, in particular, the manic desire for “More! More! More!” rather than “Better! Better! Better!” whatever the thing in question might be.
After reading your lucid and commendable remarks here, I spent sometime listening to debates on a related issue, doctor assisted suicide, paying special attention to the arguments against. After all, nobody would argue against better palliative care; but arguments against assisted suicide may give us some sense of why we don’t actually spend more money and effort improving palliative care.
The theme that runs through such arguments is rather interesting – whether it’s an argument that assisted suicide reduces the value of life in a given society, or whether it somehow robs families of loved ones prematurely, or whether it concerns possible ‘selfish’ motivations like depression or loss of hope. The theme uniting all these arguments is, ‘the individual’s death is not his or her own to claim; suffering is something we can live with as an obligation to family/ society/ god/ or the medical field.’
I remember a doctor interviewed way back when Kevorkian first became a public name, who put the matter bluntly: “Suffering is the price you pay for being alive; it can redeem you, even in death.”
We Buddhists also claim that ‘life is suffering;’ but we generally think that’s a bad thing.
But it seems to be an inheritance of Christianity, even in a secular society, to have some sense that some degree of punishment, even visited on the innocent by way of illness, has positive value. It ‘redeems’ the sufferer, it holds the community together.
Now, I’m not any charge against Christianity, that it increases the amount of suffering in the world. Christians through out the centuries have gone to considerable efforts to reduce the suffering of others. What I’m remarking here is a certain attitude toward suffering that we’ve inherited from our Christian cultural legacy. After all, how did Jesus redeem human kind? Lashed, speared, crucified, with a crown of thorns around his head.
The critically ill, terminally ill, living with intolerable, intractable pain – challenge the presumed redemptive nature of suffering; assisted suicide denies it all together.
We allow people to starve, to freeze homeless in doorways, to beg, to live isolated and unattended, defeated. Why shouldn’t we let the ill suffer?
Unless of course they can afford better care themselves – that’s capitalism, baby. If you want better palliative care later in life, invest wisely now….
Daniel Kaufman wrote:
I think you are going beyond what Dan Tippens is saying here. Obviously I don’t want people to suffer needlessly: assisted suicide and/or euthanasia are options, but they are more about policy and legislation than medical research, and of course there are very different views on their moral acceptability. I suppose you are thinking of the development of drugs/treatments which alleviate pain and allow normal functioning in people who couldn’t function normally without them but which don’t extend lifespan. I don’t know much about this sort of thing, but obviously anything which improves the quality of life and alleviates suffering is good. What are the prospects for new developments in this area? Are funding constraints preventing progress? I don’t know. There may well be a good case for more research or even for reassigning funding from other kinds of medical research, but I simply don’t feel that I have a sufficient grasp of the issues to make a serious judgment call or commitment.
On another point you raise, let me rephrase that bit in my first comment about “searches for cures” as “searches for effective treatments”. I was talking in general, but as Dan’s piece was focussed on cancer research I should have been more careful in my wording.
I am reasonably au fait with recent thinking on cancers, but just as a layman who has been reading about these matters (interviews with researchers, that kind of thing). And I think there is no reason to be pessimistic about the prospects for more effective and targeted treatments which will have far fewer side effects than traditional chemo etc.. I am fully aware, however, that there is too much hype about research breakthroughs, and that some of this is associated with attempts to attract more funding.
Are we going to live forever? No. But let’s fix what we can. We all know people who would benefit hugely from improved treatments for various conditions (including cancers). Or take the case of my maternal grandfather who died of Banti’s disease (a spleen disease). No effective treatment was available at the time. Had he lived a little later, he would not have suffered this painful, drawn-out and pathetic death at a tragically early age and my mother would have had a father as she grew into adolescence and adulthood.
My point is that the benefits of effective treatments for fatal diseases are incalculable.
Also, I think the OP creates unnecessary dichotomies. For example, counselling associated with HIV sufferers who are being effectively treated and living pretty normal lives is classed as ‘palliative care’. Isn’t this stretching the meaning of the term to breaking point?
Dan-T,
I applaud you for writing this sensitive and insightful piece. It is a deep subject and I will come back later with my own thoughts. But I will say for now that it is a pity that EJ used it as an opportunity to attack Christianity as that contributes nothing to the post.
There is no organisation in the world that does more to address palliative care than the Catholic Church with its vast network of hospitals, hospices and homes for the elderly throughout the world. The Church has a very long history indeed of caring for the suffering. And let us not forget that suffering has many facets.
Dan-T has shown remarkable and most commendable compassion and concern for one of these facets, one that each one of us must face and endure. We all die and dieing is usually attended by suffering, which makes this subject one of great concern for all of us.
A nice essay, but it can’t possibly do justice to the issues in the length of this format. So taking just one of your citations “In ten years, we crawled a mere .5% increase in 5 year survival rate” versus
http://www.nih.gov/about-nih/what-we-do/impact-nih-research/our-nation
The latter is used to justify the fact that around half of NIH funding goes to basic research overall in the 5 y plan,
http://www.nih.gov/sites/default/files/about-nih/strategic-plan-fy2016-2020-508.pdf
where the repurposing of AZT from cancer (unsuccessful) to AIDS (successful) is used as an example of serendipitous benefits of basic research.
Similarly, most expensive drugs for late stage cancer are sold on life years of improved quality (see any UK or Australian review accepting new drugs for public funding)
“[O]pt for physician assisted suicide, not euthanasia..more psychological barriers to killing myself”: I think the answer here is “Loss of autonomy (~92%)” plus I would imagine a will to spare the physician from a perceived emotional load. There are plenty of individuals who have claimed that the option of assisted suicide (“plan B”) allowed them to die “naturally”, without fear of an undignified exit due to unbearable pain or gut obstruction or unbearable itch (YMMV).
EJ: The point is about how we spend our research monies. Yes, people with more money can afford palliative care. But the point is that research into effective palliative care that doesn’t essentially turn you into a heroin user is primitive and something we hardly spend any money on, as opposed to curative care, which receives the overwhelming majority of the funds.
Dan-K,
…as opposed to curative care, which receives the overwhelming majority of the funds.
I think there is a simple economic calculus at work here. Extending lives greatly increases the income of the entire medical industry from the pharmacy industry, to the doctors and to the hospitals. People with extended lives must cope longer with degenerative diseases. These degenerative diseases are the source of a large income for the entire medical industry. Elderly people consume more drugs, visit doctors more often, need more medical tests, need more hospital stays and stay longer in hospital because they recover more slowly. Every year that a person’s life can be extended greatly increases the income of the medical industry. Thus there is a powerful economic incentive to keep people alive as long as possible while the is little economic incentive in palliative care, which has, in many cases, become a disgrace.
Mark,
“anything which improves the quality of life and alleviates suffering is good. What are the prospects for new developments in this area?”
1. Lifestyle changes.
We need more research into how lifestyle affects quality of life. For example, one study has shown that vigorous endurance running improves disability-free life by 6 to 8 years, while it only increases lifespan by two years. We need investment into how we could encourage healthy lifestyles. We could invest more money in school sports and community sports.
2. Improved counselling.
A positive, hardy outlook has also been shown to lead to a more healthy, disability-free life. It will take research to confirm this and develop strategies to achieve this.
3. Improved drugs.
For example, arthritis is the bane of the elderly. We need better drugs to improve quality of life but they will not extend life.
4. Improved care in hospices and frail care.
Geriatrics is a neglected profession. We need to attract more specialists into this profession. We need to spend more on nursing staff, frail care and hospices.
5. Improved at-home care.
The longer we can keep people in their homes the happier they are in general. We need to fund home care services and community nursing.
6. Improved spiritual support.
As people approach their end times they become increasingly worried about the meaning of their lives. We need funding to support spiritual care of the elderly. My own church has a roster of volunteers who visit the sick, disabled and elderly to give them support. This is both spiritual and material support as they will also take them on outings, help them get their medications or take them to the doctor. This is hugely valuable support.
As you can see from this list, these are all soft measures and they are hard to implement. Big Pharma will hardly profit from them so little support can be expected from this quarter. Societies with high social capital do these kinds of things. We need more research into the subject of social capital. See especially ‘Bowling Alone: The Collapse and Revival of American Community‘ by Robert Putnam.
Above all, we need political will, and this is the problem because political will has been captured by industry lobbying groups that care only about profit.
Hi all,
Thanks for the remarks.
Just for reiteration – I am *not* arguing that we shouldn’t fund increasing life span research at all, just that the distribution of 98% : 2% is unjustified and wrong.
Mark,
“Dan, a nicely written piece”
Thanks 🙂
“…but I have reservations partly because of the very nature of your argument which has all the virtues and faults of a particular kind of (or way of doing) philosophy. The arguments are clever, but nowhere near convincing.”
Yeah I’m with Dan K on this one. I don’t see myself as trying to get to a counter-intuitive/radical conclusion with sneaky but logical philosophical arguments (which is typically what “clever” has been used to denote, at least in analytic philosophy)
“It seems to me that when we are talking about issues like under what circumstances life is worth living, it is very difficult to generalize or draw satisfactory conclusions. Not only do different people have different basic intuitions on this, an individual’s views may change as circumstances change.”
Are you arguing that because people have difference conceptions of what makes life worth living, research into improving quality of life is fruitless? If so, I honestly find that baffling, and don’t think I need to spell out why, but if you are arguing something else, could you clarify?
“One of my university teachers (a very worldly and elegant French woman) killed herself with the help of a doctor when she was perfectly well. She was about 70, I think. They made a documentary film about her suicide in which she actively participated. She just didn’t want to experience that inevitable downhill drift. I wouldn’t do what she did, but I respect her. She didn’t have close family. She had led a full and happy life…”
Yes, there are some cases like your teacher’s where PAS is the best option for her, perhaps under all circumstances. But also perhaps the “downhill drift” she was afraid of were things like loss of autonomy, loss of dignity, etc, which could be handled if we were to investigate palliative care further.
And also, of course I respect people who opt for PAS, but that doesn’t mean we shouldn’t try to provide people with far more options. There are clearly *tragic* cases of PAS, which we should try to prevent.
“I am generally happy with the current focus on searches for cures in medical research. All right, huge amounts of money have been spent on cancer research and the results in terms of practical treatments have been disappointing. We were not to know this in advance however, and nor can we know that some breakthrough cures (based directly and indirectly on that vast body of new knowledge) are not just around the corner. I like the idea that our researchers are aiming high. The hope they provide has to be factored in to any utilitarian calculation.”
This is precisely the attitude I responded to in the essay. Sure, we do not know if a cure is just around the corner, its always possible. Its also possible we will never find cures. But the question is, which possibilities *should we act on?* Sure, its possible that the world will end tomorrow, but given how unlikely it is we don’t act on the basis of this possibility.
This is exactly why I look at historical evidence of progress or lack thereof, and the current state of research. Both indicate that no, we should not act on the basis of the possibility that a cure is around the corner to the degree that we are today. As Dan-K mentioned, the current state of research suggests that to even say we might find a “cure for cancer” is mistaken, since cancer is a plethora of fundamentally different diseases that only share superficial features.
There are two papers (2000 and 2011) which are landmark in basic cancer biology. They are called “the hallmarks of cancer” and “the hallmarks of cancer: the next generation.” Both are written by Robert Weinberg, and the first is the most cited in the journal Cell. Both of these outline the superficial similarities of all cancers, and how they tend to progress (though the mechanisms driving these superficial similarities will be vastly different), and if you read it, you will see that we are trying to take on a beast unmatched before, and it *makes sense* why we have had little progress (feel free to take a look at these papers, as they are open access, I believe. But be warned they are quite technical).
“I suspect that your personal views on quality versus quantity of life are affecting your arguments here, and those prior assumptions need to be more closely examined and clarified.”
Uhm, Okay. Not much to say about this one :/. However, I also don’t mind saying that yes, my personal experiences are motivating my views a bit. I even emailed Dan while writing this paper saying how depressed it was making me. I have been a first hand witness of the terrible effects of cancer a patients’ physical, psychological, social, and (in my dad’s case) spiritual health, like many others. A lot of these issues, I believe, didn’t have to be there. He didn’t have to suffer the way he did, and I know (from the data and from plenty of anecdotes during my time volunteering for hospice), that no, he was not an exception. I want this grim period in medical history, where we ignore the quality of life for patients, to end. Yes, I have personal investment, but that is not what is solely, or even mostly, convincing me. I gave my reasons.
(In response to Dan-K) “I think you are going beyond what Dan Tippens is saying here”
No, he’s pretty much on the mark.
“I don’t know much about this sort of thing, but obviously anything which improves the quality of life and alleviates suffering is good. What are the prospects for new developments in this area? Are funding constraints preventing progress? I don’t know.”
Many agree that lack of funding is constraining progress. Take a look at the 2008 paper I cited. Also feel free to just inquire with palliative care researchers themselves. They will tell you.
“And I think there is no reason to be pessimistic about the prospects for more effective and targeted treatments which will have far fewer side effects than traditional chemo etc.. I am fully aware, however, that there is too much hype about research breakthroughs, and that some of this is associated with attempts to attract more funding.”
I’ve laid out my reasons, and I work in a cancer research lab where many of my coworkers (Mostly MDs) would agree. Indeed, I presented the ideas in this paper to them before I wrote it, and they were all very receptive and agreeable. There is reason to believe an increase in progress rate is likely not close yet. I don’t feel the need to say more here. And sure, there may be more equally effective treatments that will have fewer side effects. But im sorry, I don’t see how this gives me any reason to refrain from targeting general psychological effects of having cancer, and a whole host of other non-treatment-related symptoms.
“Are we going to live forever? No. But let’s fix what we can.”
So how about we fix patient quality of life?
“Or take the case of my maternal grandfather who died of Banti’s disease (a spleen disease). No effective treatment was available at the time. Had he lived a little later, he would not have suffered this painful, drawn-out and pathetic death at a tragically early age and my mother would have had a father as she grew into adolescence and adulthood.”
This really doesn’t affect what I’ve said in the paper, at all. Nobody is denying that taking some money away from increasing life span treatments means some people wont have the treatments they otherwise would have. But hey, guess what? The converse is true too. When no money is given to palliative care, some people who would have had a good quality of life don’t, and instead suffer miserably.
“My point is that the benefits of effective treatments for fatal diseases are incalculable”
yeah, the benefits of good palliative care are incalculable too. I’m really unconvinced by all of your arguments, frankly. I even made the case for the incalculable benefits of palliative care. We will never be immortal, and will always need it. Diseases will always cause suffering no matter how long our average lifespan increases to.
“Also, I think the OP creates unnecessary dichotomies. For example, counselling associated with HIV sufferers who are being effectively treated and living pretty normal lives is classed as ‘palliative care’. Isn’t this stretching the meaning of the term to breaking point?”
I don’t care what you want to call it, honestly, as I’m not interested in a discussion about how far terms ought to be stretched. I was using “palliative care” broadly because I think the kind of people we need to help, and the kind of help we need to give them, should be expanded. Cancer patients have all sorts of really bad psychological and social issues as a fallout of their disease and diagnosis. It should not be outside of our scope to help them with this. In the case of HIV patients, sure some are living pretty normal lives and don’t need help. Also, sure, some cancer patients may be pretty normal too. Lucky for them, but they aren’t the kinds of people i’m talking about. I’m talking about those who have psycho-social issues that are bad enough to warrant helping them.
Dan-K,
Thanks so much for the kind words, and I’m very pleased to hear you agree with the essay.
I unfortunately don’t have cross-cultural data, though I would really like to look into that. it was hard enough reading through what felt like enough literature on these subjects in America, I simply haven’t gotten around to, say, Europe.
Labnut,
Thanks for your kind words 🙂
EJ,
I find your comments interesting, but not sure what to say about them right now. I’ll simply be sitting back and watching your further thoughts on this thread for now.
David Duffy,
“Cancer death rates have been dropping by more than 1% annually for the past 15 years. Each 1% reduction in cancer deaths has a present value of nearly $500 billion to current and future generations of Americans. A full cure would be worth approximately $50 trillion — more than three times today’s GDP”
Uhm, this actually supports my view even more. Feel free to spell out why you think otherwise.
“where the repurposing of AZT from cancer (unsuccessful) to AIDS (successful) is used as an example of serendipitous benefits of basic research.”
Sure, basic research can be useful. Sometimes there are incidental findings, sometimes generalizabilities. Nobody denied this, and again, I don’t think it affects my paper in any way. Im not saying we cut out basic research or increasing life span research at all. Just that more needs to go to palliative care.
“Similarly, most expensive drugs for late stage cancer are sold on life years of improved quality (see any UK or Australian review accepting new drugs for public funding)”
Sorry, but even if treatments are improving in terms of not compromising quality of life as much, its clear that patients are suffering, and that their quality of life could be raised much more if we actually did targeted investigations into how to improve their quality of life. Again, *not* just physically, but psychologically and socially. Though an interesting thing is that this point is from the UK and Austrailia. I wonder if the same is true in the U.S.
“I think the answer here is “Loss of autonomy (~92%)” plus I would imagine a will to spare the physician from a perceived emotional load. There are plenty of individuals who have claimed that the option of assisted suicide (“plan B”) allowed them to die “naturally”, without fear of an undignified exit due to unbearable pain or gut obstruction or unbearable itch ”
Doesn’t affect the overall paper’s thesis so sure, I bet for some killing one’s self is easier.
DanK,
My thinking began by asking why there is not a larger public effort to press for increased expenditure on palliative care. My sense, gathered from attending to the assisted suicide debate, is that many Americans simply do not feel an obligation to those suffering in illness (at most, it’s a family concern), but do seem to assume that the ill have some obligation to live out the suffering.
(And in a society that presumes one is responsible for one’s own health, in a health-care market place, a corollary presumption would be that if the ill don’t like suffering, they can pay to redress it themselves.)
But everybody wants a cure to be available if misfortune comes knocking at their door, so that’s what they’re willing to pay for. And after all, ‘science can work wonders.’
DanT,
Which reminds me to commend you most highly on discussing the dirty little secret concerning cancer, namely that there isn’t this one thing to it, but a multiplicity of conditions umbrella-ed under the term. Such knowledge ought to change the understanding of research in the public’s mind, but so far,, it appears many still conceive cancer as this ‘one thing,’ that science can make go away.
labnut,
I certainly wasn’t trying to attack Christianity, and I noted the strong tradition among Christians of providing care to the suffering. What I was noting was the historical origins of current attitudes towards suffering. It must be noted in passing that this attitude varies between Protestant views and Catholic, and that America is predominantly Protestant in origin of such attitudes. In dominant Protestant theologies of the Reformation (there are exceptions), misfortune is a doom to be accepted; charity is a kind of ‘noblesse oblige’ of those more favored to those less favored. And those not willing to tow the moral line are deserving of all the misfortune they get. This explains quite a bit about the cultural forms of Modern capitalism in post-Protestant countries, as was well understood among sociologists by the early 1900s.
Historically, any religion leaves a legacy, not only of beliefs but of attitudes; many good and useful, but some problematic. Such attitudes will include those we have towards suffering. One of the tensions between Hinduism and Buddhism in India was that the general attitude towards suffering among Hindus was that it could be a good thing, perhaps even purifying if properly experienced, The Buddha taught that this was egotistical and thus generative of further suffering. The Hindus eventually won over the public mind in India, and Buddhism migrated elsewhere. To this day, Indians tend to be somewhat more accepting of suffering than we find in cultures with stronger Buddhist cultural influence.
That historically Christianity holds that suffering has redemptive value cannot be denied, and it is no insult to Christians to remark this. After all, such may be the case; and the attitude has generated cultural formations of continuing value, from great works of art to aspects of the Civil Rights Movement. But it is not unproblematic, and has had some influences that we ought to question and revise.
No one *ought to* suffer – that is no one deserves to suffer – because of illness. Cancer due to smoking seems like an invited calamity; cancer due to being a woman with heavy breasts, what is that? Who invited that? Since suffering in illness is not always (and probably not even for the most part) the result of our own actions, it follows that seeing such suffering as retributive or redemptive is simply looking through the wrong lens, whether those lens be religious, economic,or in some way utilitarian, Expecting the ill to ‘learn to live with it’ borders on cruelty, even when presented in sugary words of sympathy and concern.
EJ: Do you think that people *deserve* to suffer for “invited” calamities? And how would you play that out? (I am aware that our medical establishment does, in fact, operate on such a principle, but it is one that I am very critical of.)
Labnut:
I don’t think it is fair to say that EJ used suffering to “attack Christianity.” I also don’t think one can honestly deny that suffering is conceived of as having a redemptive role in Christianity and that this *can* have very perverse consequences, depending on the brand of Christianity and the fervor with which it is pursued. Self-flagellation and mortification of the flesh belong to this family of ideas and strike me as perverse. The more extreme forms of ascetic practice belong to this family of ideas and strike me as perverse. (I *personally* find perverse the very idea that redemption of *anyone* let alone *everyone* should come from the torture and murder of a person, which is one of the main things about Christianity that has made it never really resonate with me, entirely separate from the matter of my Jewishness, which, obviously, is the main reason.)
So. yes, given the enormous, overwhelming influence Christianity has had on Western civilization, it wouldn’t be surprising to find traces of this family of ideas even in our attitudes towards run of the mill, ordinary suffering, of the sort we confront in the medical context.
EJ,
“I certainly wasn’t trying to attack Christianity” but… and here you list all the buts.
Let’s be plain about it. This is a well known rhetorical technique along the lines of I don’t meant to, etc, etc, but … dah, dit, dah (and promptly set about doing it in a plausibly deniable way).
We are all well acquainted with this c-y-a technique.
You go on to say ‘No one *ought to* suffer – that is no one deserves to suffer‘ and ‘seeing such suffering as retributive or redemptive‘, ‘Expecting the ill to ‘learn to live with it’, ‘borders on cruelty‘ all of this shortly after your mention of Christianity.
Your choice of words, the ordering of your paragraphs and the positioning of your reference to Christianity creates the clear impression that your general intent is to foster the belief that Christianity believes some deserve to suffer, that they deserve retribution and that Christianity ‘borders on cruelty‘. Otherwise why say what you did at all?
I am certainly not trying to be rude 🙂 but the kindest way to describe this is as downright wrong and ill informed.
Let me again be very plain about it – the Catholic Church does not believe that suffering caused by illness or natural disasters is deserved or is retributive. Nor do we believe ‘charity is a kind of ‘noblesse oblige’ . That is more more than wrong and ill informed.
Really, do you think that we, the Church, mount the largest and most sustained attempt to relieve suffering ever, because we believe the victims deserve this suffering? Are you aware of the fatal contradiction contained in your words? Why would we put so much effort, over such a long period of time, to relieve the suffering of people who deserve to suffer? The very idea of it is incomprehensible. Have you not noticed Pope Francis’ strong emphasis on love and helping the poor and suffering? And then you airily dismiss what we do as ‘charity is a kind of ‘noblesse oblige’.
I know many engaged in charitable work. They are ordinary, humble, sincere and devoted people, drawn from working class and lower middle class. What they do is not ‘noblesse oblige’. These wonderful people deserve admiration and not your scathing dismissal.
Can suffering be redemptive? Yes, in some instances. For example, I was stoned in early January. I am still struggling with the pain and disability from my injuries. And yet I feel stronger, more confident, more resilient and more determined than before. I faced death and did not back down. That suffering was, for me, a redemptive experience.
And so it is with suffering. We quite naturally wish to avoid it, relieve it or mitigate it, and as a Church, we believe we should do so. But if it must be endured, it can be an occasion for strengthening our character, faith and resilience. It is also more than that. If I face my unavoidable suffering with grace, courage and endurance, it can be an example to family and friends so that they can learn, in turn, to face their inevitable tribulations. In this way my suffering can be a gift to others.
Dan-K,
“I *personally* find perverse the very idea that redemption of *anyone* let alone *everyone* should come from the torture and murder of a person, ”
I’m afraid your judgement is based on a simplistic understanding of Christianity that I find strange in a philosopher. I hesitate to say this now because it is a major diversion from the main topic and to pursue this thread would be a disservice to the main essay. But I felt that I should at least not let your statement go unchallenged. I will be happy to continue this discussion privately or on another occasion, but not now.
And I disagree with you, what EJ said was plainly an attack.
DanK,
“EJ: Do you think that people *deserve* to suffer for “invited” calamities?”
No, but I recognize that’s a common argument concerning a wide variety of behavior-related ills; and the sense of it gets extended beyond ills directly related to behavior, for instance to those related to living environments. So I wanted to raise it and then close it off, by suggesting that it has at best a narrow applicability.
labnut,
Your assuming a hidden agenda here that I just don’t have. I am trying to understand why we in America – and Dan T. is discussing an American situation – do not show the support for the suffering that I think we ought; and this has historical influences from religious culture, economics, political interests, etc..
One might as well say I am ‘attacking’ capitalism, which is a bit closer to the truth, but not really true, since I am not offering any revolutionary changes to it. But I am certainly saying we should change any inherited attitudes that prevent us from mounting an effort to improve palliative care, regardless of origin.
Well, he says it wasn’t, so I accept his account of his intentions.
As for the rest, we can certainly discuss it privately. However, this — and many other sources — would seem to suggest that Christianity certainly believes that there is a redemptive dimension to suffering.
http://www.catholic.com/magazine/articles/a-pope%E2%80%99s-answer-to-the-problem-of-pain
I found Dan T’s piece, along with his follow-up comment, to be very compelling and moving. Labnut makes a good point when he notes, “Thus there is a powerful economic incentive to keep people alive as long as possible while the is little economic incentive in palliative care, which has, in many cases, become a disgrace.” At the same time, I’m not convinced that there is “little economic incentive in palliative care” or why extending life and palliative care need be mutually exclusive or competitive concerns. This, of course, underscores the huge disparity in funding that Dan has cited and makes one wonder why this should be so. Ej’s remarks have merit, but are perhaps too broadly construed to be particularly helpful in sensitizing the public regarding the severity of this problem, one that will grow rapidly in the US in the near future as “baby-boomers” like me grow older.
Not withstanding ej’s remarks, there is also the possibility that “psychological distancing” plays a role in this matter. I encountered this dynamic far too often when I worked in State and Federal welfare programs. Until an issue strikes close to home, many don’t care to be bothered or burdened with such matters.
Like Dan K, I’m curious about data from industrialized countries outside the US. Though not directly related to “palliative” care per se, I well remember when my 94 year old father had to decide on spending the remainder of his life receiving dialysis treatments. He lived to be 97, but was miserable for those years. A friend of mine said that a man of his age would never receive government assistance for such treatments if he lived in Japan. I don’t know if this is true.
At any rate, research into palliative care is obviously not distinctly age-related. It is a matter of concern for all age groups from children to so-called seniors.
Hi Dan (Tippens)
Thanks for engaging.
No I am not saying that. I am saying that because people have such very different conceptions of life and what makes it valuable etc. you can’t make a convincing case for more or less funding for different kinds of research which will work for everyone. (My real argument with you and Dan K. would be about basic views of life; except that it wouldn’t be an argument because I wouldn’t be trying to say that my view is correct and yours false, just that we have different views (which it might be interesting to try and clarify).)
I am pretty certain that any such palliative care initiatives (no matter how advanced) would have held little interest for her on a personal level.
I agree. I think there are all sorts of dangers and moral questions being thrown up in the current situation and palliative care options play into this in very complex ways.
I am fully aware of this. Note that I said ‘cures’ not ‘cure’; and that I said I regretted even talking in terms of cures in my reply to Dan K..
I have (an I think reasonable and informed) expectation of significantly more effective treatments for various cancers and other serious diseases becoming available in the relatively near future. You are arguing against a kind of exaggerated, unrealistic view which only someone ignorant of the nature and recent history of research would buy. And you speak as if you can quantify these things in an objective way: “… we should not act on the basis of the possibility that a cure is around the corner to the degree that we are today.”
Informed people know that there can be no single ‘cure’; and the ‘degree’ question is always going to be an imprecise and contested one.
I talked about unnecessary dichotomies, and I see a real danger in setting things up as you have with quality of life issues assigned to ‘palliative care’. (Cf. David Duffy’s point about therapeutic drugs.)
Let me summarise the factors that account for neglect of palliative care in favour of extending lives.
1. The heroic dimension.
Society and the medical profession find it very rewarding to save lives. Saving life is a highly esteemed activity. By contrast, no-one earns medals for palliative care. I cry in despair for the dear devoted souls who care for the dying. They are the true heroes.
2. The economic dimension.
The medical industry earns far greater income from extending lives than it does from palliative care. Unsurprisingly, it turns its efforts to areas that promise the greatest income.
3. The narcissist dimension.
We are a youth obsessed society and ageism has become the newest prejudice, just like racism and sexism. In fact ageism is a more powerful prejudice than racism or sexism. We do not like the old, in fact we find them repellent. We will happily take their money to keep them alive for longer but once that is no longer possible we will give in to our prejudice and abandon them.
4. The emotional dimension.
Dying is a messy, ugly, unpleasant business. Dan-T made this point well in another essay. Caring for the dying is difficult, demanding and unrewarding. Society prefers to cover it up, shove it in the corner and pretend it does not exist. Nothing could be more disgustingly far from the heroism of saving lives.
5. The personal dimension.
We all feel immortal. We are programmed to desperately cling to this illusion. With the fading of religious faith we cling even more desperately to this illusion, because, in the absence of religious faith, it is all we have. The medical industry is feeding our need for immortality and profiting greatly from it, by doing all it can to extend our lives.
6. The distancing phenomenon.
In earlier societies dying took place at home. Everyone was familiar with palliative care. Today that process takes place in a remote location such as a hospice. By distancing ourselves from it we aid the medical industry’s neglect of palliative care.
I hope you can see from the above that there are good and clear explanations for the neglect of palliative care in favour of extending lives. In light of this, I am, quite frankly, flabbergasted by the attempt to blame religion for this. It is just like the nonsense of claiming that religion is responsible for most wars, plainly untrue. I see, at first hand, the great good that religion does. We, the Church, are, more than anyone else, out there in the trenches, working to alleviate suffering. Then to claim that we are somehow responsible for this suffering is plainly wrong and ill informed. These dear, ordinary, loving people deserve praise, not prejudice.
I think this essay engages an important topic. I am with DanT, in thinking that as a society our priorities with regard to our conceptions of living and dying are in sad shape. I agree that we have a strange preference for longevity over quality of life.
As an individual I look to live in such a way that both factors with respect to my own life are supported. Until now (age 53) these choices have generally been complementary. I recognize that as I continue to age quality and longevity will come into conflict. At that point I expect I would favor choices that afford quality of life even if longevity were compromised, and I find it a shame that we don’t do a better job as a culture of affording those options to the individual.
I think by far the most important cause of our cultural priority on lengthening life is simply our unexamined fear of dying. I don’t think we have any kind of society wide desire for suffering, more likely we just live in denial that it will be us.
Hi Dan, well written essay (not surprising) and I was glad to see it focus on the nature of our choices rather than duties. I think that is a more powerful (and correct) way of approaching moral and practical questions.
I happen to agree that quality of life is more important than quantity and our societal priorities are currently skewed against that. So I don’t have much to add to what you said.
Mark may be right that you did not provide knock down arguments against those who look at things from an opposing prospective. Then again, is that ever possible and so a useful pursuit? More important is to confront people with the choices they are making (reveal the values underlying important dilemmas) and so allow people to review what it is they are doing.
My guess is many people (hopefully enough) do value quality over quantity in this matter, or are sitting on the fence, or are ignorant of the facts of the situation, and this essay would help them improve their position on this subject.
I was curious, from a biology perspective, about your pessimism regarding potential treatments for cancer(s). Regardless of the variety, I thought there was a promising field of research in (keeping this simple) how to target cancer “stem cells” (the cells responsible for proliferation as opposed to the general mass of tumors) to switch their apoptotic signaling pathways back on in order to shut the cells off. Or am I completely ill-informed on the subject?
Also, what do you believe is an appropriate ratio for spending (treatment : palliative care)? If I had a bias it would be that I tend to think the latter would require less investment to get results. It is possible others feel that way, or assume that we must have all the knowledge we could have on that subject already.
Hi Labnut, you made some interesting points regarding why society in general and the medical industry in specific might choose to prolong life rather than prevent suffering (or promote wellbeing).
That said, I am uncertain why you deny elements within religion (Christianity in specific) have idealized suffering. I thought your breakdown of how suffering can be viewed as empowering when there are no alternatives to alleviate it was accurate for many. But it is clear that some Christians take it further, or might use that concept to be less interested in funding palliative care over “cures”. I mean if it is noble to suffer so that another might live, why wouldn’t you choose to put more money into cures rather than temporary alleviations of your own pains?
I should note I was raised in a Christian family, in one of the more evangelical parts of the US, and went to school at a Christian affiliated university within a highly religious rural US town. I knew people that refused medical treatment altogether and especially pain reduction as against god’s will. I get what you are saying, but you seem to be dismissing the existence of other Christians which have a viewpoint (and influence) along the lines that EJ discussed.
I was also a bit let down that you criticized EJ’s comments about Christian beliefs and then said this about Atheists…
“We all feel immortal. We are programmed to desperately cling to this illusion. With the fading of religious faith we cling even more desperately to this illusion, because, in the absence of religious faith, it is all we have.”
Yeah, immortality might be ok… I suppose. It depends. That is the whole point of choosing quantity over quality of life. It depends on the quality.
I don’t think I have felt “immortal” since I was a teenager. And as an atheist (in science to boot) I am well aware that option is not coming up on my watch. I will die and I am not clinging to any illusion otherwise. Nor do I know ANY atheist that thinks or feels such a thing. The idea that without religion that “is all we have” seriously misses what many atheists (or at least myself and those I know) hold of value in this world.
Like most religions, Christianity holds out a promise of immortality to its adherents as something of great value. Atheism doesn’t.
Hi Seth, I sort of agreed with your last sentence “I don’t think we have any kind of society wide desire for suffering, more likely we just live in denial that it will be us.”
But to be honest I think there are a lot of people who feel that if someone is suffering, maybe they deserve it. And if something sinful can be pointed to (ah they smoked!) then they definitely deserve it… and why should I help someone that brought it on themselves?
I have seen people arguing for money to be spent on preventative “wellness” programs, because that is cheaper than treating (or coming up with treatments for) actual illness. That includes alleviation of suffering.
It’s treated like people just shouldn’t get ill in the first place… as if that were possible.
Perhaps we need to deal with a societal puritanism which labels people with illnesses as “guilty” or “innocent”. HIV/AIDs was huge with that stigma and certain forms of cancer seem to be getting hit the same way.
Hi DB,
I will reply more carefully tomorrow morning so this is a quick note just after midnight.
“I was also a bit let down that you criticized EJ’s comments about Christian beliefs and then said this about Atheists…With the fading of religious faith ”
No, I wasn’t referring to atheists, I was referring to society in general. Religious faith is a nuanced thing with many gradations. My phrase, ‘fading of religious belief’, refers to the general decline in strength of religious belief until the present time when most people are token believers.
When I use the term ‘Christianity’ in a broad sense I mean the dominant form, which is Catholicism and, as an un-American, I always take an international perspective. I know too little of the evangelical or fundamentalist sects in Christianity to say anything intelligible about them so I would rather say nothing about them. Therefore I always comment from a Catholic perspective.
Which brings me to a general point. I never criticise other faith traditions, not Islam, not Hinduism, not Buddhism, not, etc… First, because I know too little about them, second, because I respect them even though I may disagree on doctrinal matters, and third because I was strongly influenced by my close association with a Buddhist. During the years I worked in China I had a full time interpreter who was a devout Buddhist(I was then an atheist). I was greatly impressed by this lovely, intelligent girl who lived her beliefs with such sincerity. What was notable was her refusal to attack other faith traditions. That, I thought, exemplified Buddhism.
Good night.
Dan T: An important issue, well presented, that I think might be best addressed by addressing our difficulties in addressing matters of happiness at all, and that is something that calls for some philosophical thinking.
First, I know so many people who had some form of cancer and have been living full lives for years. At my age (64) you tend to know a lot of people like that. I’d like to see a comparison of 5-year survival rate for 1970-75 vs 2005-2011 rather than comparison with 1995-2000, and in that latter period, by the way, there has been overall shrinkage in the funding of research.
Mostly, I think, the medical research establishment should be left to do what they do, except that they should pay more attention to the diseases of the poor. The main paradigm of medical research is saving and extending life. Institutions are highly organic and trying to re-engineer them to have a different paradigm or graft this or that onto them is very likely to spoil what they currently do well. The medical science research institution is a scientific entity; it deals in things that we know how to measure. I wouldn’t oppose trying to multiply the 1% or 2% for palliative care to 5 or 10%, but I wouldn’t tamper with the overall philosophy of mostly dealing with measurable things.
There is a sort of movement to measure happiness, or pay attention to some measure of “gross national happiness”, but that will take a very new kind of thinking, and I expect we’re in for a period of muddle and frequent failure before we gain any collective competence at that.
I’m a long way from catching up with all responses here, but some things draw my attention.
Mark English wrote:
I agree with “unnecessary dichotomies”; actually I think we need to drastically reduce our dependence on dichotomies — they have a certain crude effectiveness in dealing with all sorts of problems, but I emphasize “crude”, and they are very susceptible to manipulation and dark uses.
As for “counseling … classed as ‘palliative care’.,, stretching the meaning of the term to breaking point?”, I’d strongly disagree, and suspect it reflects a generally low opinion of counseling, which, though very much an art, can be highly effective. Watch the movie 50/50 produced and acted by Joseph Gordon-Leavitt, before you trivialize the role of counseling for someone with a 50/50 survival prognosis.
Hi DB,
I am sure the ‘they must have deserved it’ attitude you describe exists to some degree. It might also service as a device for the denial of the realization that ‘it could happen to me’ I was referring to. I don’t personally believe it so wide spread however as to be a primary cause of the situation DanT outlines or to be ascribed terms like societal puritanism. I think we have a larger societal problem of seeking out all to easy access to instant comforts while avoiding even minor physical, mental and emotional discomforts all at the expense of our own longer-term well being.
It is time to consider the unintended consequences of this unstoppable drive to increased lifespan.
We are all consumers of goods and services. The wellbeing of business depends on this fact. Business grows when we consume more and shrinks when we consume less. Secondly, our business/financial model demands growth. Therefore we must consume more to fuel that growth.
But there are three great trends that threaten this growth.
1. Declining birth rate.
Later marriage, fewer marriages, changing attitudes to marriage and increased narcissism are dramatically reducing the birth rate. This translates into fewer younger(20-45) people who are the main engine of consumption.
2. Increasing proportion of the elderly.
This is the result of extending our lifespans. Elderly people consume less because of lower energy levels, shrinking horizons and declining appetites. Retired people adapt to reduced income by living more frugally. Except that they consume more medical goods and services.
3. The concentration of wealth in the hands of the few.
While noted for their conspicuous consumption, the 0.1% are too few in numbers to compensate for the declining consumption of the 99.9%.
The combination of declining birth rate, increasing lifespan and concentration of wealth threatens us with economic calamity because consumption will decline to below the levels to sustain growth. And then it will decline further until the economy contracts. At this point the economic strains will be so great that there may be collapse. Even without economic collapse we will play a diminished role in world affairs and be more subject to the whims of younger, growing, more vigorous and dynamic nations who will have mastered our industrial/scientific skills. I saw at first hand in China how quickly a nation can acquire new skills. Indeed that was why I was there, to help in the transfer of skills.
In my next comment I will consider the options open to us to sustain growth, stave off economic turmoil and retain international relevance:
1. Increased immigration.
2. Increased birth rate.
3. Longer working careers.
or alternatively
4. Cultural adaptation to stasis and a subordinate status to other nations. This will be a painful adaptation.
I had been hesitant to mention (but I might as well) that I have had some negative experiences with professional proponents of palliative care (managerial, bureaucratic, not workers or volunteers) and believe that some of their methods and assumptions can legitimately be called into question. What I am adamantly opposed to is the subtle (or not so subtle) imposition of a supposedly ‘correct’ view of life and death and the human condition.
labnut
In an earlier response to me you set out the various aspects of palliative care very clearly. Some of these things may well, as you suggest, benefit from research. I am not arguing against research funding in this area, but I do have reservations about some of the claims and arguments being made here.
Hal Morris
In no way am I trivializing counselling. My point was that there seems to be only a tenuous link between dealing with the dying and incapacitated and dealing with people who are neither incapacitated nor facing imminent death.
The options available to sustain growth and stave off economic turmoil caused by demographic changes are:
1. Increased immigration.
2. Increased birth rate.
3. Longer working careers.
Should we fail to do these things we will need to make a cultural adaptation to stasis or decline and a subordinate status to other nations. This will be a painful adaptation.
1. Increased immigration.
We will try to compensate by allowing more immigration on a larger scale. But that may cause more problems than it solves because they take time to integrate and adopt their host society’s values. This creates a transition period of greater stress in society which will amplify the economic stress of declining consumption. In any case immigrants are initially low consumers as they are generally employed on low wages so their initial contribution to consumption, and thus growth, is small.
2. Increased birth rate.
This is the best solution but societal values have changed so much that we cannot reverse the decline in birth rate. To encourage more births the state would need to introduce large subsidies to support the costs of having and rearing children. Unlikely. That abortion factory, “Planned Parenthood”, should be closed down and this would help to some degree. Very unlikely, since sexual pleasure has become the nation’s lodestar. Catholics and Muslims, with their higher birth rates, may become a larger part of the population and this will help to some extent.
3. Longer working careers.
If you want to live longer you must work longer. This conclusion is inescapable if we want to sustain our economy. The retirement age will be raised. The problem here is to retain vigour among the elderly so that they can usefully contribute in the workplace. I expect there will be a bigger emphasis on exercise programs as a means of retaining vigour. Big Pharma will research pharmacological solutions in anticipation of a big payday. Neither solution will help much other than boosting the profits of the sports industries and Big Pharma. As consequence we will have companies dominated by the elderly. This will frustrate the younger workers, limiting initiative and innovation.
My candid opinion. The sun is setting quickly on the American Age as it becomes unmoored by a collapse in values fueled by the embrace of narcissism and hedonism. America and Europe are destined to become client states, the fatted cows, whose existential purpose is to consume the goods and services exported by the more vigorous Far Eastern nations. Why am I so pessimistic? Because I lived in China and saw for myself what is happening there. OK, I am being provocative but strong provocation is sometimes necessary.
Hi Labnut,
What? Have you even been to a planned parenthood facility? This claim is simply absurd.
Narcissism is arguable. As a confirmed and proud hedonist, excessive hedonism is definitely not what the US (or Europe) is suffering from. Its been rolling back pleasure since the rise of the religious right since the 1980s. Materialism is arguable too. Hedonism, no.
Labnut, I agree with much of this, but think that some of what you say about having more children is not just wrong, but bad. Birthrates are a real problem in the Industrial West — and in Japan — but the idea that the way to increase them is just to force people to have children, if they want to have sex, is entirely wrongheaded. To return women to the situation they were in, pre Roe v Wade, would be disastrous and to ban birth control — the other thing you’d have to do, to have the effect that you want — is just a bad idea. The two together would effectively re-impose the most rigid of patriarchies and would cause us socially to regress. The number one reason why women are no longer effectively baby-making property is because modern, Western countries gave them control over their own reproductive cycles.
The only way to address this problem, without regressing into a bunch of knuckle-dragging patriarchs is to make marriage and parenthood attractive again. This can be done partially through positive incentives — much greater subsidies for families with children than we currently give — but most of the heavy lifting will have to be cultural in nature and will take generations.
Doing it this way may push us to the point where it is too late, but employing the measures you suggest in your discussion of birthrates would be worse than the problem they’re designed to solve.
Dan-K,
phew, you have fearfully mischaracterized what I said. Let me have a double scotch before I reply 🙂 No, let me retire to bed, my knuckles are quite raw from dragging on the ground 🙂 🙂
labnut, characterizing Planned Parenthood as an “abortion factory” is an exaggeration. Of course, we could always argue about what constitutes abortion–like providing contraceptives–but let’s not.
http://www.factcheck.org/2011/04/planned-parenthood/
Labnut: I was hardly calling you a knuckle-dragger.
I look forward to hearing how I misunderstood you. I hope you can see, however, why one might, given that your remarks about shutting down Planned Parenthood were made in the context of worrying about declining birth rates.
labnut,
I’ll try to make my case one last time, and be done with it.
In the run up to the imperialist adventures that led into the Second World War, many Buddhists in Japan supported the militarism that effectively impelled the imperialism – and this included many monks and scholars. Was this some execrable mistake on their parts? Not really. The fact is that many Buddhist sects had long integrated into the culture of the samurai, and even preached the way of the sword as one path leading to enlightenment. Although technically that culture had faded away nearly a century previously, by the 1930s, there was considerable nostalgia for it, and for the ethos that it was presumed to embody – which ethos was believed to be resurrected in the military junta that then governed Japan. Recognition of this culpability led to considerable soul-searching and discussion in Buddhist communities following the war.
Had this discussion concerned the dangers of imperialism, that would rightfully prove a possible topic for consideration. But the discussion here, I thought, concerned attitudes towards suffering, in a specific culture, and the problems involved in realizing funding for the alleviation of suffering. These attitudes have a history.
My main concern was understanding that history and its enduring effects on American attitudes towards suffering. It may be true that my discussion was too abstract to be immediately useful, as Thomas Jones remarked; but it’s necessary to recognize such attitudes in order to develop successful strategies to change those attitudes.
No ideology (in the context, that is, no systematic ethos), religious, political, economic, cultural – no matter how otherwise ennobling or beneficial – is free of ideas which can produce harmful cultural formations.
Furthermore, these ideas must be confronted if we are ever to understand the given society philosophically or sociologically, and if we are ever to think our ways out of them. Hopefully, this would produce an ideology nobler and more beneficial than hitherto.
Or are we to include a ‘trigger warning’ with every comment that seeks greater understanding of a social problem in a way that might upset someone?
(BTW, I was raised Catholic, spent the first 35 years of my life in that tradition, including reading major texts of theology and doctrine, from Augustine to Vatican II, as well as histories and cultural texts within the tradition, and, of course, discussing these with other Catholics. It’s not like in becoming a Buddhist I simply forgot everything I learned or practiced previously. To be lectured to by a recent convert about ‘what Catholics believe,’ because I happen now to follow other traditions, is, to say the least, somewhat ironic.)
Finally, I add my voice to Thomas Jones, dbhomes and DanK in criticizing your unnecessary complaint against Planned Parenthood and abortion. Especially in the context of a discussion about reducing suffering, such remarks are unsettling.
You may have written those comments satirically; and it may be true that, though the situation is unpleasant, alternatives are also unpleasant. But making abortion illegal targets women specifically, and would increase suffering unnecessarily.
Dan,
Sorry to be late to the party. I really, really liked this piece. There seem to be two parts of it. Most is devoted to the case for more palliative care (which I find quite convincing). Then you move to sketching some ideas of what in our culture causes our reticence to develop such care. Especially here:
“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.”
I’ve been thinking a lot about this. I keep thinking there there is more to this than just “quantity over quality”. America has always celebrated a kind of constant sometimes unreflective doing. From Franklin’s relentless “industry” to Roosevelt’s manic, “strenuous life” there have been hymns to work and accomplishment and a deep suspiscion of “useless” things like arts and high culture. Life is a kind of manly struggle and the discomfort and “Strain” is to be embraced as a kind of crucible. Life’s major satisfactions are to be found in work not in enjoyment or leisure. In such a culture to admit to being unable to endure would be to fail at what is most important. The strenuous life requires patient, uncomplaining suffering as a fundamental value. The combined suspicion of leisure and pleasure (there is nothing really to miss out on) and the shame at being unable to endure make a powerful combination. I have been reading Jackson Lears’ history of the progressive era and he makes a great deal of this.
Hi Seth, I agree with several points you made.
The “they must have deserved it” attitude definitely could serve to reinforce ideas it can’t happen to oneself. I was thinking my comment was more complementary and additional to your point than some replacement/antagonistic idea.
I also agree that it is not entirely widespread (on every issue) and not a primary cause for what Dan was discussing.
However… I think it can be devastating on case by case bases and arguably one of the largest factors in the denial of care for HIV/AIDs as well as drug addiction. In fact, this can be extended to other social concerns such as poverty and the safety of sex workers where care is about the last thing people invest in toward these issues.
And I think this attitude is present enough in the US that it can be referred to as social puritanism (something I will get back to in my response to David).
Regarding the choice of instant comforts over long-term well being, does that include things like smoking or riding one’s bike without a helmet (two examples given by Dan)?
Hi David, I have not read Lear on the progressive era but the entire phenomena you discuss is based on the social puritanism I mentioned earlier to Seth.
Throughout my early years religious types around me were quite proud of discussing the Protestant work ethic or Puritan work ethic which was responsible for the success of the US and which shaped its current culture (including the progressive era which ironically modern religious conservatives are coming to despise). I checked and there’s even a wikipedia page on it (https://en.wikipedia.org/wiki/Protestant_work_ethic).
Your words were a nice summary…
Given its ubiquitous presence it was something I began life accepting without thought (though never the religious elements which were alien to me), and it took many years to challenge and dismantle.
It has become a horror to me as I watch its increasing global encroachment, replacing diverse cultures that once celebrated “life” in the name of greater “productivity”.
David. It seems to me like what you are describing in the latter parts of your comment are a version of the Protestant ethos.
Hi db,
Based on your last comment think we are in general agreement on social puritanism. I certainly wouldn’t dismiss it’s case by case consequences.
Questions with regard to activities like smoking or riding without a helmet I think can be fit in to DanK’s conception of the workplace of competing values. I would start off by saying that I wouldn’t be an evangelist for my take. Next I would say context and degree always matters ( Dan’s occasional pleasurable smoke with a friend is a different animal from a multi-pack a day dependence).
My take on smoking would be that based on the robust findings of the negative health consequences of regular smoking it is best not to form a dependence. I don’t think this is an issue of longevity vs quality. I think dependence soon enough detracts from quality of life as does with longevity.
I think risks of the bike helmet issue are related although the probabilities involved differ. One fall and head injury can have dramatic consequences. My mom had a fall (not bike related) and severe concussion that caused a great deal of suffering for over a year and the consequences are ongoing. Again I don’t see this as a quality vs quantity issue, but one of prudential values in risk management. I used to ride a bike every day in city traffic and quickly determined I should wear a helmet. Eventually I transitioned to running to work as I experienced too many close calls most due to no fault of my own. I found the running to be safer, less stressful, and overall more pleasurable.
Your contention seems to be that a slow but steady improvement in outcomes is a cause for pessimism, but I think by contrast this shows returns to investment that, of course, extend into the future and around the world into other health systems. The problem with basic biomedical research is precisely that there is a long lag time before we see the benefits of the small proportion of leads that actually pan out. The current collection of novel expensive treatments for advanced cancer arise from work done 10-20 years ago, and the great cost per person treated with these agents are justified increasingly by the calculations of health economists. The dominant tool they use is the Quality Adjusted Life Year, which is one approach to the quality versus quantity question. Speaking as a biomedical researcher ;), there are plenty of other places where money is being spent in the economy with no positive outcomes at all.
So, to take the example of vemurafenib, used to treat advanced melanoma (median survival 6 mo), this gives “an additional median overall survival of 3.3 months”, giving a cost per quality-adjusted life year (QALY) gained of A$105,000-200,000, reduced after bargaining with Roche to A$45000. You would probably know that health departments are willing to spend up to ~50K per extra QALY, and amounts estimated as being saved by improvements in medical treatments at the top are based on this metric.
The benefits of vemurafenib looks pretty terrible at face, except the drug actually leads to roughly (this is very rough) 10% of recipients gaining several years of life (remission), with no effect in the other 90% (where side-effects will cause some diminution in quality).
The argument made by the pharmaceutical companies is that these prices are in fact that of the basic research. If Peter Singer were here, he would of course point out there are much cheaper QALYs to be bought in other countries.
As to whether palliative care research, as opposed to palliative care, is underfunded – in Australia, this would come under health services research, that is pragmatic projects with relatively immediate benefits, eg
http://www.caresearch.com.au/caresearch/tabid/3104/Default.aspx
or
http://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-015-1201-9
As to bicycle helmets (as opposed to motorbikes), Australia made these compulsory some time ago. It is clear that they halve the risk of head injury, so that the risk to cyclists per kilometre travelled reduces to only 2-3 times that of people in cars. So, should be we ban cycling completely? It turns out that the injury rate per distance travelled is about that of pedestrians (at least in the EU figures I have looked at). Since I cycle commute in traffic and rock climb, I can hardly defend “nanny statism” for everything, but I can defend harm minimization, and also limitations on self-harming risky activities that are sufficiently common in the population that large absolute numbers of people are affected.
DK,
Absolutely. Actually Lears very much emphasizes protestant narratives about conversion and strong, sudden emotion coloring American culture.
Hi Dbholmes,
“I was curious, from a biology perspective, about your pessimism regarding potential treatments for cancer(s). Regardless of the variety, I thought there was a promising field of research in (keeping this simple) how to target cancer “stem cells” (the cells responsible for proliferation as opposed to the general mass of tumors) to switch their apoptotic signaling pathways back on in order to shut the cells off. Or am I completely ill-informed on the subject?”
Yeah, there is a growing area of research on cancer stem cells. Indeed, Robert Weinberg (the author of the landmark papers “the hallmarks of cancer”) has done some of the pioneering work in this field, showing plausibly that only certain cancer cells (the cancer stem cells) are capable of seeding new tumors.
Indeed, there are other “promising” areas of research as well, such as immunotherapy research, which is a huge rising field. Ever since the successful (complete or partial) use of inhibitors blocking interaction between PD-1 and PD-L1 in three cancers, people have been going pretty crazy about this field.
However, like almost all past big achievements in cancer research, they are always limited in scope, and I see no reason to think otherwise in this case. Taking PD-1 as an example, it worked pretty well in three cancers, but not others (such as pancreatic and colon, two large killers in cancer statistics).
These advances are part of the .5 percent increase in 5 year survival rate, and I until the long term statistics change, I see no reason to classify them into a special area of “promising” research, if what you mean by that is that they are going to be “snowball” fields which culminate quickly in widespread effective therapies. Again, I just see this as a fundamental feature of cancer – that they are all different, and they all have natural selection on their side. Interestingly, people have been talking about how natural selection in cancer doesn’t just happen at the cellular level, but at the group-level as well. This was recently put forth by a couple of philosophers, actually, in order to explain how metastases happen – they propose that metastases are in a sense a product of group-selection.
“Also, what do you believe is an appropriate ratio for spending (treatment : palliative care)? If I had a bias it would be that I tend to think the latter would require less investment to get results. It is possible others feel that way, or assume that we must have all the knowledge we could have on that subject already.”
Good question, and I’m really not sure. I would leave this to the palliative care researchers who are working in the field now. I also agree that less investment would probably be needed, but right now many palliative researchers are decrying their lack of funding.
Hi Hal,
“First, I know so many people who had some form of cancer and have been living full lives for years. At my age (64) you tend to know a lot of people like that. I’d like to see a comparison of 5-year survival rate for 1970-75 vs 2005-2011 rather than comparison with 1995-2000, and in that latter period, by the way, there has been overall shrinkage in the funding of research.”
—Among adults diagnosed with cancer during the period from 1974 through 1976, the 5-year relative survival rate for all cancers combined was 50%.— NIH https://report.nih.gov/nihfactsheets/viewfactsheet.aspx?csid=75
“The medical science research institution is a scientific entity; it deals in things that we know how to measure. I wouldn’t oppose trying to multiply the 1% or 2% for palliative care to 5 or 10%, but I wouldn’t tamper with the overall philosophy of mostly dealing with measurable things”
Definitely an interesting thought. This is indeed a hot topic right now in bioethics, I believe. I recently saw an article on just this topic from the editor in chief of the BMJ.
David Ottlinger,
I like your comment a lot about the cultural reason that may really be motivating this distribution of research. Would love to hear more as you think more about this issue (perhaps an essay on the topic? 😀 )
Hi David Duffy,
“Your contention seems to be that a slow but steady improvement in outcomes is a cause for pessimism…”
Not quite, my contention is that slow but steady improvement with no sign of picking up the pace is a strong reason to start funding more palliative care, as we can see that patients will be suffering for quite some time.