Adventures in Community Palliative Care

I didn’t do very many creative, arty type things in 2020 and maybe that is ok. I spent plenty of time admiring the work of persons of greater skill instead. I also spent 3 days a week for about 7 months in Community Palliative Care. This means, I got to visit people’s homes and treat them for the pain, nausea, itch and other discomforts that result from incurable disease. I did this over a large area of Sydney, meaning that the catchment encompassed people from a variety of cultures, ethnicities and socioeconomic statuses. I also realised very quickly, that a lot can be gleaned from seeing a person at home, that is not evident when seeing them in a clinic room. For example, when I saw the 70year old with recurrent exacerbations of emphysema at home, it was immediately evident that, not only did he have dogs, but these dogs made a lot of mess, their fur was everywhere and the house also stunk of cigarette smoke – hence, the inability to stop the cycle of exacerbations. So, it is probably not a good thing that the financial and time pressures GPs are under means that fewer and fewer are doing home visits.

I also observed that not only does Sydney have rich suburbs and poor suburbs, but sometimes rich and poor people live close together. Some people I visited had multi-storeyed homes, with shiny tiles and elaborate fountain arrangements, while nearby dying people lived in gloomy 1970s double layer brick homes, with fraying carpets and the smell of age and damp. These government houses were freezing, so much so that inhabitants would be dressed in layers for winter, when it was warm outside. I met Chinese families, Greek and Croatian families, Lebanese Muslims and various refugees and they all welcomed us in their unique ways. Turns out the Chinese and Lebanese both like feeding people – so I frequently ended up taking cakes, slices and bags of cherries to the office.

One of the reasons I wanted to write this blog was to share some of the remarkable DIY creative endeavours I observed. One home I visited had a garden which was decorated densely with cheap ornaments. In addition, the son had built a Chinese pagoda, with a bridge and a pond full of koi. In another, instead of artworks, a patient had tapestries in the style of classical art all over her walls. I cannot imagine how long these would have taken to complete. One patient was living in his garage. He had set his garage up like a pub in former times, with a bar, television and pool table (now fallen into disuse). Another patient again had a suit of armour in his living room with his face printed and placed under the visor. I saw elaborate doll collections, animal heads (real or fake?) on display and elderly people who struggled to leave their homes, but still took pride in their fish, their garden and Christmas decorations. All of this left me thinking, alternately, people are amazing or gosh, people are strange, depending on my mood.

The experiences weren’t 100% positive. One irritable, but otherwise perfectly reasonable patient appeared to control his dog by hitting him with a large stick. At another place, I interviewed a patient in a garage where there hung a pornographic calendar, featuring a naked woman with large breasts, an unrealistically small waist and an apparent complete absence of labia minora and body hair. This annoyed me, not because women aren’t allowed to appear this way, but because 1. it feeds into a culture where infantilised vulvas are idolised and so many women feel bad about their genitalia and 2. very large breasts and extremely tiny waists probably just lead to back pain. So screw the male gaze.

Anyway, I was surprised that many of my colleagues in palliative care expressed a dislike for home visits. It is more convenient to have patients come to you, of course. Sydney traffic isn’t great and driving takes a lot of time out of your working day. I tired of this aspect, while I still enjoyed the novelty that comes from visiting people. Moreover, it saddens me that the Medicare rebate for GPs is so poor, that many cannot afford to do home visits. So many of these complex patients were not mobile enough to physically visit a GP and having family members go on their behalf or visits via phone call were less than ideal. While the expansion of tele-health due to COVID19 has had many benefits, sometimes you really need to examine someone. I think medicine loses greatly if doctors are unable to afford home visits. Also I worry that this is an area where the most severely disabled and chronically ill are neglected by our medical system.