Our patients want to wrest back control over the most fundamental moments of their lives
The wish to give birth at home or to “do all we can” at the other end of life are manifestations of the same desire, writes Dr Casey Parker
Home birthing and hospice care. Birth and death, aside from taxes, the only certainties in life! These may not seem to be related topics, but they are. Stay with me and I shall explain.
Let us start with home birth. There has been a bit of banter in Broome and online about the modern controversy associated with “home-birth” for women in places like Australia. [ Ed: If you want to start a twitter argument – this is a pretty good opening gambit! ] In some countries this is the norm. However, in most of the developed world the vast majority of babies see their first light in the labour ward or operating theatre. [ ~1 % of American women birth at home, although up to a third do so in the Netherlands. In Australia it is more like 0.5 %]
Australia has excellent antenatal and Obstetric care. We have really great outcomes – amongst the lowest maternal mortality rates in the world. (equal 6th) And yet…. there exists a group of women who wish to opt out of this world class care. They want to give birth in their own home, surrounded by family and a caring midwife. They argue that being born is a ”natural” phenomenon that need not be medicalised or confined to a hospital.
This bothers us… the doctors. It flies in the face of logic. Why take the risk of disaster? We see the cases where things go very wrong. Surely these women just need to know the stats? We have all seen or heard of Coronial cases resulting from home birth. We can explain to them how critical interventions will not happen in time if they need to catch an 11th-hour ambulance across town – surely they will see reason? But no, they do not. In fact these sorts of discussions tend to polarise things further and create an atmosphere of opposition. What is going on here?
OK let us now jump to the other end of the roller-coaster ride. Dying. I have been reading a lot of excellent posts and podcasts about the interplay between Critical Care and Palliative care. Recently Dr David Anderson ( @expensivecare ) wrote this piece: DNR: Who decides?. There have been discussions by my American colleagues in which they despair over the near universal family response there: “We want you to do everything to keep him alive.” Read this excellent article recently on KevinMD by Dr Jarman ( @DocJarman ) on “Why Intensive Care is a Myth.” We seem to have a problem.
We have a disconnect between our doctorly understanding of the dying process in the modern medical paradigm and the beliefs and expectations of our patients and their families. When doctors are surveyed they almost universally say they would decline aggressive care in the the final phases of their illness. However, we know that the majority of patients will opt for what we see as futile care – be it CPR, chemotherapy or “hail-Mary surgery.” What is driving this? Why do our patients and their families request treatments that we would never accept at the end of life? It is often hypothesised that ‘Joe Public’ overestimates our ability to “bring Dad back” from watching too many episodes of E.R. [Jones, Acad EM 2000] – but I don’t buy that explanation. There is something more personal and fundamentally human going on when families decide on what they or their loved ones want “if the worst happens.”
For me there is a common theme here. The desire to give birth at home or the wish to “do all we can” at the other end of life are both manifestations of our patients wanting to wrest back control over the most fundamental moments of their lives. The humans that we treat are yearning for CONTROL in a time where things seem to be anything but controlled. We offer the illusion of control with our hospital machines, language and powerful medicines… and yet we know at our core that we cannot control these situations completely. They scare us too.
So next time that you have that difficult conversation with a family or discuss the expectations of an excited, young mother-to-be.. remember this: they want control. Whether that means choosing the “lighting in the labour ward” or when they have had “enough medicine” we need to be champions of our patients autonomy. The ‘irrational’ fears, demands and expectations we see every day are those of our making. We have stripped much of the control from our patients and this has resulted in anxiety and opposition. So try, just try, to offer real control to your patients and see how it goes. Go on… what is the worst that could happen?
