I would like to die at home, in my bed, with my cats beside me.
Okay. That’s a good start. It’s got me thinking about what I want at the end of my life. It’s a great goal, but it has massive limitations. Few of us die slowly and deliberately. A diagnosis of ALS, cancer, or heart failure might allow us to die at home. What about when you’re hit by that proverbial bus or have a massive heart attack at the hockey arena? You’re going to go to the hospital, and it’s not practical or feasible to ask to be taken off life support to be taken home to die.
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Eighty per cent of us die in hospital. Therefore, our advance directives must be practical and doable so they can be converted into orders that healthcare professionals can do something with. Advance directives are supposed to be legal documents in and of themselves, but when they can’t be used or useful, they are useless.
My goal is to have people write advance directives that are practical and usable — right at the outset of the document. In my advance care planning teaching sessions I introduce ‘Levels of Care’ that are standard in British Columbia. When I show people the six levels — only one of which includes full resuscitation — there is a collective sigh and, “Gosh, that’s easy. Now I know what to write.”
These advance directive questions are the best of any I’ve found. But, it’s still a lot for a doctor (who won’t know the patient) to wade through to put black-and-white orders in place.
Here are examples of advance directive wishes that can easily be converted into medical orders:
1. I am still relatively young. At this point in my life I am not seriously ill. I want to be resuscitated and put on life support if there is a probability that I will recover to some extent. However, if I have serious brain damage or there is little or no brain activity, I do not want to be put on life support or I want it to be removed as soon as recipients have been found for any organs you can use.
2. I have metastatic cancer. I know there is no cure. I do not want my life prolonged in any way. Should I develop complications, I don’t want them treated. I want comfort care and pain management only.
3. I am old. But I am still enjoying life, and time with my family is important to me. I want all medical treatments tried should I develop any kind of infection. I want any fractures repaired. I do not want to have CPR. I want all healthcare professionals to consult with my representative and family about any and all healthcare options — they are my eyes, ears, and voice. If it is felt that treatments will not be useful and will cause suffering, I am ready and willing to die. When that happens, I want my family at my side.
4. I am my memories and my future. I live to be of service. When I can no longer remember where I am, who my family is, when I can no longer feed myself, when I am always incontinent, I want to die. If the option is available, I would like MAID. If that is not an option, I ask that you not treat infections, you don’t feed me, and you don’t give me oxygen. Please keep me free of pain.
Make your advance directive as straightforward and as simple as possible. It will be read by people in a hurry, who are looking for information they can immediately use. It will also help your family help you.
Connie Jorsvik is an independent healthcare navigator and patient advocate. She holds an Advance Care Planning certificate with Fraser Health Authority and frequently runs ACP workshops throughout Vancouver and the Lower Mainland. She was a registered nurse for 25 years.