The long, slow, resource intensive way that most of us will die

It seems like lots of us imagine we will only need a few weeks - or at most, a few months - of significant care and support before we die. And many of us imagine needing no care at all: “I am just going to drop down dead in the garden”; “I will never put up with someone else wiping my bottom!”; “I am never leaving my home.”

But because the way we age and die has changed so much and so fast in the last 30 years, the reality is that very few of us will die swiftly. Most of us will need lots of care for years before we die. In places like New Zealand, even when we are over 80, have lots of health problems, or a terminal diagnosis, most of us will live for years - getting frailer, getting lots of test and interventions, needing care and support, and taking lots of different medicines.

In many ways this is great news - more people are living longer. And at the same time, how many of us are really prepared for this very long, slow dying?

Some people are worried that we are living longer but not better.

How could we as a community (rather than just individuals or families) think and talk more about systems of care that fit with the realities of long, slow, frailty and dying?

Care today (in families as well as in institutions) often almost exclusively focuses on medical and physical issues and keeping each other safe and alive. We spend much less time considering things like relationships, emotions, meaning, joy and purpose. Some old and chronically ill people talk about feeling lonely, worried and depressed for long stretches of time.

Many of us don’t like profit-focused aged-care providers and say we would prefer to die at home, being cared for by our own friends and families. And at the same time more families are feeling overwhelmed (emotionally, physically and financially) and unable to care for elderly or chronically ill loved ones for so long and with such high needs.

Many of us say “I never want to live in a long-term care home” and “I would rather die than have that life”. And yet at the same time - even when we have moved into a long-term care home or have late-stage dementia - we and our loving families often keep doing thing to make sure that we live for as long as possible. We keep taking more medications and new supplements, getting vaccinations, asking for more interventions and treatments, calling the ambulance. When is it okay to stop?

Are we thinking enough about the years before we die - not just the last few months?

What would happen if spent a bit less time focused on our medical and physical wellbeing, and a bit more time thinking and preparing for the relationships, connections and pleasures we want most in our last few years? How might this change how we live and what we talk about right now?

What would needing years of care and support mean for you and your family? How do you feel about it? Have you talked about this together?