The day you meet me in the emergency department with your sick parent is probably one of the worst days of your life.
'My name is Ash and I'm the medical registrar on duty. I'll be your mum's doctor tonight. Mum is very sick. Please sit down so we can talk about what's happening.'
This is usually how I meet people. It's 9pm in our chaotic emergency department and you've brought mum in after she had a turn. The ED doctor has done some tests and has called me to admit her to the medical ward.
Your mum is 89 and getting progressively more frail. She has her share of medical conditions and has a long list of tablets. Her memory is starting to fail her. She might live alone, or with you, or in a nursing facility. Those details don't matter as much. She's your mum and she looks so sick. You're terrified you're about to lose her.
You tell me the story and I add those pieces of the puzzle to the ED doctor's handover and the blood results I've reviewed. I've also read about her previous admissions, outpatient clinic letters and correspondence from her GP.
I'll tell you
Mum has pneumonia. The chest X-ray and the story of this worsening cough tell us that. From what we can see, the infection has probably spread to her blood. This is called sepsis, but some people call it blood poisoning. Because of this sepsis, mum's kidneys are starting to fail and she's needing a lot of oxygen. She's starting to become delirious. She is very sick.
The next part of our discussion is about how aggressively we treat mum.
If you and I are lucky, mum is still conscious despite her illness and can tell us what she wants.
If we are extremely lucky, you've talked about this before and have an Advanced Care Plan which you hand to me. This is my dream scenario as it tells us exactly what mum wants and takes away your anguish.
Unfortunately though, the most common scenario is that mum is too unwell to talk now and you've never thought about it. She's been well enough and talking about death is so morbid.
'I know that it's a hard discussion to have but it's best we do it now, rather than on the phone at 3am when she deteriorates.'
You see, as doctors, we have the ability to keep a person alive indefinitely. If your lungs fail, we can put a tube down your throat and have a machine breathe for you. If your kidneys fail, we can attach you to a machine that filters the toxins from your blood. We can even mimic the function of the heart. We can fill your veins with tubes and lines and attach you to life support.
If the patient in front of me is 21, we usually do all of those things. If the patient in front of me is 101, I probably would do none of those things and focus on their comfort.
Every other patient falls somewhere along that spectrum, and tonight, I need you to tell me about your mum so that we can work where she fits.
If a persons heart stops, we can perform CPR. CPR requires me to put my weight onto mum's sternum and push. To do this effectively, I will inevitably break some of her ribs. This sounds horrible, but if we don't do that, the heart doesn't pump blood to the body and without blood, we die.
A young heart might be likely to restart, whereas statistically, mum's 89yo heart won't and we would perform traumatic CPR until we made the call to stop resuscitation.
When I am the medical registrar at a code blue that involves doing CPR on an elderly person, I usually go home after work and cry. We're causing so much trauma to a frail persons chest, when realistically every doctor in the room knows the outcome will be death - regardless of if we do CPR for 10 minutes, 1 hour or 3 hours. The patients ribs are cracked and their final moments are traumatic. They are surrounded by doctors, not their children. That's not a 'good', or dignified death.
Why do we do it then? Because if you insist you want 'everything' done, that's what doing everything means. If you don't write an advanced care plan telling us what matters to you, we do the default option. If we don't fill in this resuscitation form on admission (because its a hard conversation, you can't decide now, mum gets too distressed by it) and your mum has a cardiac arrest, the default is to do CPR.
(Note in Victoria, Aus we can make a patient 'not for CPR' for medical reasons but doing this when you insist you want CPR is pretty horrible too!)
'So for us to decide, I need you to paint me a picture of mum. Tell me what mum is like on a good day. How far can she walk? Has she lost her memory? How is her quality of life? Does she hate hospitals? Has she ever spoken about death or dying?'
Some people want everything done and want tubes and life support and an admission to ICU. In my experience, when people understand what 'everything' means, they don't want that at all.
'Mum is receiving strong antibiotics through the drip and the intravenous fluids will help her kidneys.'
We give everyone (even the 101yo from the nursing home) the same treatment in this regard (some people have heard a horrible myth that if you say no CPR, we don't do anything). In 24 hours time, many people will have improved significantly, however given mum's other medical conditions there is a chance she doesn't get better, and a very real chance she will, in fact, get worse.
'I need you to tell me what you'd like me to do. Our choices are to do the invasive things above and send her to ICU, or to acknowledge that 89 is a remarkable age, and that if the antibiotics have not helped, it's time for us to let her go.
This second option is called comfort care or palliation. It means no more painful blood tests, no more invasive tests, no more discomfort. It means giving her pain relief and symptom control and her favourite foods. It means not worrying about her cholesterol tablet or her vitamin D capsule. It means making sure everyone she would want present visits. It means calling the priest if that's important to her. It means everyone getting a chance to say goodbye.
Palliation is hard for many doctors because we like to fix things. We like cures. We're excellent at saving lives, but struggle to accept we can't save everyone. But death is natural. Death in old, frail people is very natural. We arent supposed to live forever and having a peaceful death with family present is a wonderful thing. A good death is as important as a successful resuscitation.
I'll leave you to talk to your siblings while I fill out mum's admission paperwork and when you make a decision we can fill out the 'Goals of Care or Resuscitation' forms.
If mum does survive this pneumonia, I need you more than ever to talk about what her choices are. Please fill out an advanced care plan and give copies to your GP, specialists, family and the hospital.
The day I meet you in ED will probably be one of the worst days of your life, if you've had this discussion, the knowledge that you're respecting mum's wishes will make your pain easier to bear, I promise. Please have this talk this week, regardless of whether your parents are 60 or 100. Your future self will thank you for it.
Advanced care forms can be found online here.
(My passion for conversations about dying and a 'good death' and everything i know about it can be credited to the truly amazing geriatricians and the palliative care team I work with at Western Health)
(My passion for conversations about dying and a 'good death' and everything i know about it can be credited to the truly amazing geriatricians and the palliative care team I work with at Western Health)
