We met with the palliative care folks today. They talked a lot about the Advanced Healthcare Directive. The gist of it is, you can change your mind at any point, but if you have decided, for example, that you don’t want to be revived, you put it in your directive, if you become unconscious, your loved ones can just hold it up to the paramedics and say, “No sir, no CPR for him.” If at some point, you change your mind and you would like the paramedics to give you CPR, you must change the directive before you get unconscious.
This is only one of the tough decisions that make up an advanced directive. It is a much bigger task if you have a hard time making decisions and don’t even know your wishes. Maybe I just don’t understand the concept of wishes in the context of dying. Because if I had a wish, I would probably wish not to die, not how to die. I know I’m avoiding the issue, but I have adolescent tendencies even though I’m just past middle age (given old age ends at 120).
One of the arguments in favor of writing a directive in advance and sharing it with those you love is that it takes the pressure away from them. Ok… I’m closer to making one. But I still haven’t decided about my advanced wishes.
Below is a portrait of an imaginary person who does have an advanced directive. I tried to make the eye look upward, but it ended up just looking calm. The mouth on the other hand doesn’t know what’s going on, and is scared.
Palliative Care Portrait
9″x12″ 140# Cold Pressed Watercolor Block
Some people feel pressured to make an Avanced Care Directive just after receiving a diagnosis of cancer. If one is not elderly then one most likely has a very strong desire to live. In this country if you are a public patient with cancer, you may have to fight to get appropriate treatment as you will be seen as a burden to the system. Elderly patients can also be easily discriminated against as young hospital staff may not understand how pecious life can be to a 70 year old or how much joy a healthy 80 year old can get from life. Under treatment is becoming much more of a problem than over treatment. Before doing an Advanced health Directive, make sure you take time to consider it, talk to a doctor who specialises in your condition ( palliative care doctors people see at hospitals are often young inexperienced doctors trained in symptom management, and may have little knowledge of your particular illness , they are suitable to see in the last days/weeks of life but if you are in the earlier stages of an illness get as much advice as you can ) . Talk to your family and to your usual family doctor, do not be quick to make a decision. You could say that you wish to have CPR until such time that you , after having all options and possible outcomes explained to you by a fully qualified doctor, make an informed decision that you no longer wish to hae CPR. Then you would have to say who can make an informed decision for you if you are unconscious or incapable , and maybe add some conditions that you think should influence the decision. The danger is that if you say that you don’t want CPR, doctors and hospital staff may think you no longer wish to have all available treatment, so take time to think about it and make your wishes are clear. Remember that when you get sick , you may change your mind about treatment choices so always write that you want all options and possible outcomes fully explained to you by a qualified doctor before any decisions are made for you even if you have said that you don’t want them in your advanced health directive or advanced care plans. Advance care plans can be used as an excuse not to keep patients fully informed. You have a right to be fully informed at all times and a right to change your mind at any time. For example, a nursing home patient who has an advanced care plan saying that they do not wish to go to hospital if sick , still has a right to be kept informed and to change their mind at any time. Do not let palliative care staff nicely convince you to put the convenience of the health service ahead of your rights to be fully informed , to make decisions and to change your mind at any time.
https://australianpalliativecare.wordpress.com/2016/09/22/poor-palliative-care-encourages-euthanasia-this-is-health-system-failure
Thank you for your thoughtful information. We are negotiating through that thicket at the moment.
best,
j