
I work as a palliative care doctor in NSW. A large percentage of my work is treating patients who are at the end of their lives, keeping them comfortable – as well as complex psycho/social/bio symptom management. The patients we see are still primarily those suffering terminal cancers, and almost all of my patients are, at any given point, sick enough to die.
In Australia at least, we generally have (geography dependent) decent palliative care, and the majority of people under our care are comfortable when they die. Most die comfortably. Most do not suffer. Those who do have symptoms to address, we treat – with medication for pain, for nausea, for breathlessness, for anxiety, for a whole host of things.
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What does this have to do with COVID-19? The introduction of a pandemic changes the way we live, but also the way we die. At the moment, people wish to die where they are most comfortable – and often this is at home. People generally want to die with family or loved ones about. People generally wish to be as comfortable as possible. All of these things are threatened by COVID-19.
For patients who are breathless at the end of life (lung cancer, emphysema, heart disease etc), we would often prescribe medications like morphine to help control the way the brain breathes and the lungs absorb oxygen, as well as medications like valium to take away the panic that comes from not being able to catch your breath. We know roughly what kinds of doses are needed for certain circumstances, and how people tend to respond.
A new disease changes how we manage. Whether we will have enough medication (and as the virus ripples through the workforce, the expertise), is open to question. My friendly hospital pharmacist has already been finding it difficult to source some medications – global supply chain issues. That’s before the wave of the pandemic hits us.
What about going home to die? At the moment in my current area, we provide nursing support at home, sometimes an hour or two here and there to help out with cares and medications, carer training, medication help. If, however, we have a community patient known to be COVID-positive… we cannot provide these things. The risk is simply too high, and so dying at home becomes fraught.
Patients in Italy and in the United States have been dying in single rooms, with no one around, because no one is allowed to be there. Sometimes a visitor can come – wrapped in a spacesuit of protective equipment, for 15 minutes. Sometimes the hospital can find an iPad to do a video chat. Sometimes the staff are so short on protective equipment that they can’t even go into the room to give medication doses, but have a pump with a line running under the door connected to the patient, so they can give extra doses, without going too close.
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It's a heartbreaking set of circumstances, but I do feel like it should be an option open to the family: that they should be able to say "We'll spend the time, in person, with our loved one without PPE and afterwards we'll go into self quarantine pending testing." That would prevent spreading anything further, but it would mean they're at risk of catching it themselves.
Sure, as long as they’re willing to go on a ‘low priority’ list for ventilators. That’s the only way we can allow people to knowingly expose themselves to infection, by ensuring that they aren’t then going to take resources away from an infected doctor or nurse or anyone that didn’t get to make that choice.
My 43 year old brother was ventilated when he died, he also had Influenza. All of his family (wearing protective equipment) were at his side when staff turned the ventilator off. No-one should die alone, especially children, even during this pandemic. As for the family members being a low priority for ventilators, how about we include those who are supposedly self isolating, but are not at home when the cops check on them? Or those people who flout the social distancing laws? The mental anguish of not being able to be with a loved one when they die can lead to long term grief issues.
Very good (if also very depressing) story.
Should we be raising money for iPads / whatever in hospitals so people don't die alone?
Old phones perhaps?
IT Security might be a big issue though.