Dying is not a medical failure, it’s part of living. Sometimes my patients aren’t ever going to recover and the medical procedures we do to them probably aren’t the sort of things they would have wanted. But they were too sick to say they didn’t want these things at the end of life, so they ended up on the medical conveyor belt and suffering, with their families as unwitting collaborators.
What do dying patients tell us is important to them? “Please don’t let me suffer,” “Please don’t prolong my dying,” “Please help me maintain control as long as possible,” “Please help me, at the end, strengthen relationships with my family and friends,” and “Please help me reduce the burden on my family.”
To ensure these [are respected], I think everyone should have a conversation about their wishes around dying. Often people who are dying try to talk about this but they get shut down. The family will say “Mum, stop talking like that.” It’s just that family members are struggling with it themselves. It’s important that doctors, or nurses, or their family give patients permission to talk about it.
Most people say they would prefer to die at home. But unless you have made your wishes clear, when the time comes your family will probably call an ambulance, you’ll be taken to the emergency department and you’ll probably die in hospital.
The best thing is to draw up an Advance Care Plan [“living will”]. If you write that you don’t want to be put on life support, you want to be kept comfortable and allowed to die, it avoids prolonging the process – it gives you back control. For me, it’s nice to know that my family understands if I lose the ability to look after myself and can’t communicate, I wouldn’t want to be kept alive.
An “acceptable outcome” is different for everyone. Some people would be happy if they were in a wheelchair and could be pushed outside and feel the warmth of the sun on their back. Others say if they couldn’t walk or talk or feed themselves, they wouldn’t want ongoing treatment.
Because I have that information available in a legal document, as a doctor I can appraise the situation, evaluate the condition the patient has come in with, look at all of our possible treatment options and assess the likelihood the treatment will get the person back to this acceptable outcome. If not, let’s stop now rather than put them through a whole lot.
Think about your goals and values. How does your current state of health influence these? If you were to get so sick you couldn’t communicate, for example if you had a stroke or a heart attack, who among your family or friends would you want me to turn to for guidance on what to do? In my experience people immediately know who they trust and who they would want to be involved in the decision-making – usually a spouse or a child. At the end, it helps us in hospital if we know who to contact to get a sense of where to draw the line.
An Advance Care Plan is a document that’s simply a tool. The most important thing is to have the discussion between the patient, doctor and family. Think about who you want there, what to say, where to die – do you want to be cared for by nursing staff or, if possible, go home and be cared for by the community nurses and palliative care?
We need to normalise death. In the past kids and grandkids grew up seeing Grandma in bed and then she died. But now we have medicalised death. I have seen numerous cases where people have been very frightened about dying, but after they put in writing what they do and don’t want and chose someone to act on their behalf, they found that they could concentrate on living out the rest of their lives as well as possible.
It’s important for people to communicate with their loved ones while they still have the ability. I had a patient who hadn’t spoken to her son for 15 years. She did an Advance Care Plan and on it she wrote “Please tell my son I love him.” We managed to get a copy to him and he saw it and it mended their relationship. If she hadn’t had someone sit down with her and ask the question, it simply wouldn’t have happened.