The most recent issue of The Economist has articles on a shake up in the “death care” industry, a $16 billion per year industry that it describes as “stodgy and exploitive.”
Undertakers have long been able to get away with poor service. Their customers are typically distressed, under time-pressure and completely inexperienced (people in rich countries buy more cars than they do funerals). As a result, few shop around, let alone haggle. With consumers docile, providers can keep quality low and prices high—much like tourist-trap restaurants, another one-off purchase made in haste with little information. Some sellers have made matters worse with techniques ranging from opaque pricing to emotional blackmail. The asymmetry in knowledge between undertaker and grief-stricken client allows ludicrous markups on things like coffins. It also makes it easier to sell services that people do not realize are mostly unnecessary.
Funny, but all the factors that The Economist believe are characteristic of the death care industry are also characteristic of another industry. One with annual U.S. revenues not of $16 billion, but rather $3.5 trillion, or more than 2,000 times as much. Want to guess which one?
First, let’s review the discussion of the “death care industry.” The seminal expose on this industry was the American Way of Death, written by Jessica Mitford in 1963.
While The Economist describes the funeral industry as a $16 billion industry in 2017, The Atlantic described it as a $1.6 billion industry in 1963, which would equals $13.05 billion in 2018, adjusted according the Consumer Price Index. If it seems as if the price has gone up consider this. There were 2.7 million deaths in the U.S. in 2015, but just 1.8 million in 1963. Even so, according to The Economist
In an updated edition published posthumously in 1998, Mitford was disappointed at how little had changed: prices had kept rising and undertakers still sold services customers did not know they could refuse or felt too embarrassed to question.
And yet something important has changed. In response to The American Way of Deathand other muckraking, the funeral industry’s selling and billing practices became the subject of stricter regulations. At the federal level, the regulations in question are known as the “funeral rule” as enacted in 1984.
The Funeral Rule, enforced by the Federal Trade Commission (FTC), makes it possible for you to choose only those goods and services you want or need and to pay only for those you select, whether you are making arrangements when a death occurs or in advance. The Rule allows you to compare prices among funeral homes, and makes it possible for you to select the funeral arrangements you want at the home you use. (The Rule does not apply to third-party sellers, such as casket and monument dealers, or to cemeteries that lack an on-site funeral home.)
In New York State, as one might expect, there is a licensing procedure that only allows “authorized persons” who have paid a big fat fee to the state to handle the deceased, with the expectation of being able to make it back later.
Although the state provides information on customer rights as well.
Now consider the industry 2,000 times as large – health care. Are not costs opaque? Don’t people often get services they don’t need, with dozens of physicians and other providers showing up and billing at many hospital stays? Isn’t it true that the customer is typically distressed, lacks information, and is in no position to shop around?
And how about the billing practices, and all that complicated insurance paperwork? One of the things I had hoped would come out of health care reform is a health care equivalent of the funeral rule, with simplified, easy to compare pricing available up front. Ideally on a government website, where one would click on a certain service or condition and see the amount charged by all the providers nearby – or further afield, if one were willing to travel. And the same price for everyone, except perhaps for discounts for the less well off.
It didn’t happen.
And how about emotional blackmail? A dishonest death care seller might try to upsell those left behind by making the cost of the final arrangements a measure of how much they loved the person who has died.
A dishonest health care seller might try to upsell by pretending that a person’s decline and death can be somehow avoided. Rather than merely slowed and postponed, at a price in money, pain and side effects.
Now that I’m getting older I am gradually becoming an obsolete fuddy-duddy, something that bothers me not a bit. After all, I’m not doing anything different, I’m just doing what I’ve always done, like watching non-cable TV. Apparently many people my age and older are doing the same.
And for that reason I am now treated to commercial after commercial after commercial touting drugs that promise to prevent the decline inherent in aging. With happy actors who are at least a decade or maybe two younger than the purported beneficiaries of the product on the screen, smiling happily as a host of alarming side effects being read. My goodness – how many of THOSE types of treatments does one want to have? Just to try to avoid what people 100 years ago – or even 20 years ago – just dealt with. When my grandparents watched Lawrence Welk, in contrast, they were only hassled to take Geritol and use the latest denture adherent.
Just this morning I saw a “news piece” on the ultimate service for those unwilling to face decline and death.
For a substantial fee, this organization will freeze your “technically dead” body in liquid nitrogen so it can await the day when medical technology allows it to be revived. Not as a somewhat alive old person but as a brand-new young person, one that nonetheless still has “all the wisdom” of their previously lived years.
I can’t wait until the 1960s generation demands that this service be covered by Medicare, funded by debts later-born generations will be left to repay because that majority Trump-voting generation also wanted tax cuts. It would be a true irony if members of that generation were to be revived in 30 years, only to find they had to work 60 hours a week and have 70 percent of their income payable to the Chinese and Arabs to make up for the debts they ran up their first time around.
The reality, regardless of whether people are prepared to face it, or believe there might be something after, is that death is inevitable. And beyond a certain point postponing death merely causes more pain and suffering. As our parents generation goes though this stage of life, some years after our grandparents’ generation did, I’ve been thinking about it recently. I’m prepared to face it, and don’t want my one death to turn into the painful nightmare it has become for many, if I could avoid it.
It would appear that the hospital industry may not be as bad as it once was in that regard. In the early 1990s, when my paternal grandmother died, she was suffering from angina, congestive heart disease, and incurable bone cancer, among other things. My grandfather was caring for her at home, but when her pain got too terrible he took her to the hospital. Where she would be stuffed into a then-new and expensive MRI machine that they needed to make pay, which for her was the equivalent of torture. Finally, my grandfather made them stop.
Later, I was talking about this at a family gathering when a second cousin, a moralistic doctor who worked at a hospital catering to the poor in the Bronx, objected to the premise that the hospital had done something wrong. If you come to a hospital, he said, it is their moral duty to save your life. If you don’t want your life to be saved, don’t come to the hospital. I think health are professionals with a strong ethical grounding now realize that it isn’t always their duty to save someone’s life, that sometimes people need something else.
Just because the health care industry is sometimes willing to let go of a source of revenue, however, doesn’t mean the revenue source is ready to reckon with the end – or that good information is available about when it is in fact the end, and how much it would hurt to put it off a little longer. Because Americans aren’t good at facing decline and death, there isn’t much research or information on how to make it less unpleasant and wasteful. Here is one of the most important aspects of life, and one of the most difficult, but because making it better might not be a way to make more money, it is only now being studied, and not much.
But there does seem to be some debate about the subject over in the U.K. One person stirred up controversy by asserting that given the alternatives, dying of cancer is pretty much the best option.
There are, as I endlessly repeat, essentially four ways to die: sudden death; the long, slow death of dementia; the up and down death of organ failure, where it’s hard to identify the final going down, tempting doctors to go on treating too long; and death from cancer, where you may bang along for a long time but go down usually in weeks. Suicide, assisted or otherwise, is a fifth, but I’m leaving that on one side for now.
I often ask audiences how they want to die, and most people chose sudden death. “That may be OK for you,” I say, “but it may be very tough on those around you, particularly if you leave an important relationship wounded and unhealed. If you want to die suddenly, live every day as your last, making sure that all important relationships are in good shape, your affairs are in order, and instructions for your funeral neatly typed and in a top draw—or perhaps better on Facebook.”
The long, slow death from dementia may be the most awful as you are slowly erased, but then again when death comes it may be just a light kiss.
Death from organ failure—respiratory, cardiac, or kidney—will have you far too much in hospital and in the hands of doctors.
So death from cancer is the best, the closest to the death that Buñuel wanted and had. You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion.
Others beg to differ.
When you are a terminal cancer patient, about the only thing that can be done for you is to place you on palliative chemotherapy – in my particular case a very nasty regime called FOLFIRINOX. I go into the chemo centre every 14 days. The in-patient part takes seven hours, from start to finish. I then return home connected to a chemotherapy pump, which runs for another 42 hours. A nurse comes to my home on day 3 to disconnect the pump. Of each 14 day cycle, I lose at least 8 days to nausea, clinical fatigue, chemo brain, neuropathy in my hands and feet, sores in my mouth etc.
With the remaining 6 days, I have some time to work through my bucket list. These physical aspects are cumulative.
And while most people want to die at home, pain, agony and the burden of their care often makes this impossible for most.
Today, we are more likely to follow a trajectory of slow declining steps before dying. With an explosion of cancer therapies, whose marginal benefit is often obscured by breathless headlines, the temptation for patients to keep trying them “just in case” isn’t going away.
But it’s naive to attribute the entire problem to eager oncologists who can’t stop prescribing chemotherapy when the real epidemic is that as a society, we are averse to discussing mortality. Everyone agrees on improving communication between doctors and patients at the end of life but research shows that even when terminally ill patients are coached to ask their oncologists about prognosis, they avoid doing so, preferring to know about their blood count and the next chemotherapy.
Many people may want to die at home but when confronted with the unexpected ramifications of illness, realise that staying at home is simply not viable. Many people simply change their mind. No one should feel guilty about this – after all, what is the healthcare system for, if not for our neediest patients? The question is not whether dying patients need professional healthcare support but what form it should take.
Apparently, over the U.K. there is a website about how to die.
To the extent that people do think about death in the U.S., however, it is as part of a debate over assisted suicide. Which is just another example of people being unwilling to just let things happen.
Regardless of the reason, the fact is that someone could write a book like The American Way of Deathtoday not about what happens after a person is dead, but about what happens before. It too is overpriced and opaquely priced, not planned in advance, and much worse than it has to be. And despite the Obamacare debate about end of life – panned as “Death Panels” — there is apparently no good information available, in part because the health care industry is still focused on stopping death.
If I could live long enough, I might at some point be willing to simply accept one death to avoid another, and to avoid having to spend a high percentage of my last days receiving painful and debilitating treatments followed by a struggle to recover. Or so I believe now. I can only hope that in a twenty to thirty years information will be available to allow me to make those decisions, while I retain the capacity to do so.