Until the mid-1900s, it was assumed that most Americans in the US would spend their declining years in the care of their families. But after two world wars, a global depression and an epidemic of Spanish flu that would kill and displace between 3% and 5% of the earth’s population, the fabric of family life began to fray. Old people were turning up in droves in poor houses as the only viable option for long-term care.
Policymakers in the US saw a pension system as an antidote to the problem, but even after the Social Security Act was introduced in 1935, the numbers of elderly who turned to poorhouses for refuge refused to drop.
Obtaining enough money to pay for a home wasn’t the issue: “Pensions hadn’t provided a plan for that final, infirm stage of mortal life1.”
From dying at home to nursing homes
At the same time, advances in medical science were fundamentally changing the way we viewed ageing. As age-related health problems invariably arose, we turned more and more to the medical profession for answers. As a medical problem, this meant ageing was potentially ‘fixable’. Philosophically, we would shift from thinking of death and dying as the inevitable, to ‘find out what’s broken and then fix it for me’.
In 1945 in the US, most deaths occurred at home. By 1980, though, only 17% occurred at home2, as ageing was migrating to medical centres. The more the aged in frail conditions stayed on, the more untenable the pressure became on the hospital system. Out of these capacity constraints, the concept of the nursing home emerged.
Ageing had moved from being a natural, family-centred problem to a medical problem, then to an institutional problem. But the institutionalisation of ageing would have (and continues to have) its own perverse outcomes. Entering into such institutions as nursing homes and old age homes effectively meant relinquishing autonomy over one’s life. In the interests of keeping people safe and keeping costs as low as possible, people in long-term care institutions found their lives regulated on every possible level. Controlling quality of care was not the same as creating quality of life.
The net effect: “We achieved some important societal goals of freeing up hospital beds, taking burdens off families, coping with poverty, but never the goal that matters most to the people who reside in them – how to make life worth living3.” As Gawande describes it, we had lost the ability to be the authors of how our story would end – and this was an important exercise in giving meaning to our lives.
Beyond nursing and old age homes
In response, a continuum of care evolved over the next 50 years. From retirement villages that could mirror home life to assisted living, frail care, and finally to hospices, each facility would try to strike the right balance between the need for medical care and individuals’ autonomy.
Ironically, the biggest impediment would turn out to be the insurance industry. It insisted on keeping a firm grip on how much free will people could have in these facilities. It incentivised the medical support system to do just about anything to keep elderly people alive, but did little to help them come to terms with the inevitability of ageing. As Gawande points out: “We pay doctors to give chemotherapy and to do surgery but not to sort out when this is unwise …The issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is – what, in other words, we should and should not be paying doctors to do4.”
This changed in an interesting but important way as a new concept of care moved to centre stage: palliative care. Palliative care first emerged in Canada in 1979 and was specifically developed to serve patients with life-threatening illnesses. Thought of another way, palliative care actually cares for those who are dying – for whatever reason. What made it unique was that it focused not on healing, but on relieving pain and identifying the best ways for an individual to feel as comfortable and ‘normal’ as possible in their remaining months. Its approach is holistic: the best palliative care programmes go beyond the purely physical to address social, legal, economic, psychological, spiritual and human rights considerations. Essentially, palliative care is about quality of life – or what’s left of one’s life5.
Perhaps the most important lessons from palliative care were the insights it provided the medical profession into the destructive power of treating ageing too much as a medical problem. A 2016 study in the International Journal for Quality Healthcare highlighted the fact that, on average, 33% to 38% of patients who had entered the end-of-life period received invasive treatments that were of no medical benefit to them. Between 33% and 50% of patients who had expressly requested do-not-resuscitate were similarly subjected to these non-beneficial treatments. On some level, this highlights just how difficult the decision is about when to treat and when not to treat. Near death, hope springs eternal6.
When patients were provided with palliative care options, the impact was significant. In a number of randomised studies in the US and UK, patients who received palliative care were found to have lower depression, less pain, and actually lived longer than those who underwent traditional interventions of chemotherapy or surgery7. If medical interventions meant individuals ended their lives separated from their loved ones in sterile hospital wards and enduring the indignity of painful medical procedures, eating tubes and breathing machines, surely palliative care provided a better quality of life at the end. As a further bonus, palliative care also appears to reduce post-death trauma for family members.
Palliative care can relieve the financial pressure of using expensive medical interventions and hospital beds while at the same time restoring autonomy and dignity to people’s lives.
In South Africa, the palliative care movement is gaining significant traction. In many ways, it is ideally suited to the South African social environment. The power of palliative care is that it can be integrated into community-based home care. The most visible presence of palliative care in this regard has been in relation to the treatment of HIV/AIDS in rural areas. In fact, there have already been a number of successful programmes, specifically in KwaZulu- Natal, demonstrating a model of care that integrates hospice, home-care, and palliative services specifically to address the needs of HIV/AIDS patients8.
The next big challenge for palliative care will likely be dementia. Already, dementia is set to be the next big killer globally. In the UK, researchers from King’s College have projected that dementia will overtake cancer as the number-one killer by 2040. There is an all-out call to double the current capacity for palliative care capabilities to meet this eventuality. In South Africa, dementia, and not necessarily ageing, may provide the critical wake-up call to policymakers about the tsunami of long-term care capacity that will be required here. Dementia is most decidedly not an aspect of ageing that families can manage on their own. But we will get to the issue of how unprepared South Africa is in this regard in the next section.
