The lights go out one by one

Shivani Ranchod

I have an uncle in his seventies who says that ageing hasn’t been too bad. Luckily, he says, the lights go out one by one. What he means is that your capacity diminishes slowly – giving you time to adjust to each loss.

It seems that I have been reading and thinking about ageing a lot lately. It started with Tracy Kidder’s book “Old Friends”. It’s a gentle exploration of the inhabitants of a nursing home: their friendships, tragedies and idiosyncratic journeys to arrive there. I found the book utterly depressing but could not put my finger on why. That is, until I read Atul Gawande’s “Being Mortal” which helped me understand. Gawande’s book is an exploration of ageing and dying and the ways in which our health system deals with both phenomena. In one part of the book he likens the type of nursing home depicted in “Old Friends” to prison – both institutions run on set routines and group activities. You wake up at a certain time, you all eat at the same time, exercise at the same time and so on.

Of course, those types of nursing homes are not the only options in old age. There are a range of possibilities (for the wealthy) – although I’m not sure how many of the variations he describes are available in South Africa. Reading the book made me realise that I haven’t had any of the necessary conversations with my parents about their vision for their future. Even though we have the financial resources we are proceeding with close to zero knowledge of our options.

Gawande got me thinking about the trade-offs between safety and independence. As a parent of small (and not-so-small) children you constantly have to check in with yourself that you don’t veer too far on the side of safety. But perhaps the same applies in old age – in our quest to keep the elderly safe we perhaps discount the psychological and emotional cost of lost independence and freedom.

Whilst Gawande’s exploration of ageing is insightful and thought-provoking, it is really his material on how we deal with death that resonated with me. The topic has been close to my heart for some time. The research we did on healthcare costs in the last year of life[1] in the South African private sector showed that healthcare costs in the last year are more than three times higher than in the second last year of life. Medical schemes (South Africa’s not-for-profit equivalent of PMI) spend more than 12 times as much on those in the last year of their lives than they do on survivors (even once we adjust for differences in age between the two groups). And altogether the latest figures indicate that 8% of medical scheme claims are for costs in the last year of life – this despite a mortality rate of less than half a percent. Whilst this raises obvious questions about rationing, there is a bigger question at play for me: why do so many of us choose to die in hospital?

Gawande describes three stages of development that countries go through with regards to “the place of dying”. It starts off with most people dying at home. Then as economic resources increase and access to modern medicine improves more and more people die in hospital. In the third stage (we are not there yet in South Africa) emphasis on quality of care swings the pendulum back to people choosing to die at home. Apparently that swing is happening in the US. They do, however, have ample room to swing back – an astounding 25% of Medicare spend is on healthcare costs incurred in the last year of life.

In the US insurers have found that when they give policyholders access to a hospice or palliative benefit in addition to their curative benefits (i.e. not taking anything away) and make the hospice/palliative option known – healthcare costs come down and patient satisfaction improves. I found it interesting that people in the study lived longer with hospice care than they did with curative care. This is not entirely surprising given what we know about adverse events in hospital (issues like hospital-acquired infections and surgical complications). So much of modern medicine is oriented toward fighting to the bitter end – even when a less aggressive approach would make the end less traumatic.

So what does this mean for us? As the insured population ages (in South Africa and elsewhere in the world) we cannot ignore the financial impact of end-of-life care. And I would argue that we have a moral obligation to consider benefit designs that could potentially improve outcomes AND reduce costs. End-of-life benefits in South Africa are usually limited to the last two weeks of life – this often means that the benefit can only be claimed retrospectively (how else do you know when the last two weeks commence?). Can we really defend having a benefit that can only be accessed after the beneficiary has died? Are there alternatives that allow for real choices and effective planning?

So much of medical scheme risk management revolves around attracting the young and keeping the old at bay. This means that there is little incentive for schemes to differentiate themselves on better end-of-life cover benefits.

Gawande (himself a surgeon) argues that hospital-centric and aggressive treatment options at the end of life are more a symptom of modern medical philosophy than financial incentives. However, a high proportion of end-of-life costs are part of the minimum package of benefits that all medical schemes have to cover (by virtue of how the package has been put together). This means that there is little financial incentive or pressure for doctors to consider alternatives. And when schemes cover in-hospital care but not home-based or hospice care they effectively favour the more expensive pathway.

The most striking moment in Gawande’s book was a discussion of a study where patients with complex and high-risk diagnoses were given a consultation with a palliative specialist. The results were astounding – patients made dramatically different choices, costs came down and both the patient and their families reported higher levels of satisfaction (and patients actually tended to live longer too). It seems that patients (and their families) wait for their doctors to signal when it doesn’t make sense to continue fighting, and doctors frequently feel like they owe it to their patients to keep fighting. The net result of this “you-first” game is enormously expensive and does more harm.

If the solution is as simple as a conversation what are we waiting for?

[1] https://insight.co.za/research-and-opinions/