Recap:
An Advanced Medical Directive (AMD) is a legal document you sign in advance to inform your doctor that you do not want the use of any life-sustaining treatment to be used to prolong your life in the event you become terminally ill and unconscious and where death is imminent.
A Lasting Power of Attorney (LPA) is a legal document which allows a person ( 'donor'), to voluntarily appoint one or more persons ( 'donee(s)'), to make decisions and act on his behalf as his proxy decision maker if he should lose mental capacity one day.
The AMP and LPA can be done at PCS Clinic with me for free during consult hours.
The act of identifying your values by going through the process is commonly referred to as Advanced Planning. Although advanced directives and documentation of values can help doctors and healthcare workers provide care consistent with your goals, they frequently do not affect the quality of end-of-life care or improve doctor or surrogate knowledge of your preferences.
What? All that planning doesn’t improve my quality of life??
Problems
A: People have problems predicting what they would want in future, because these predictions do not reflect their current medical, emotional or social context at that time.
What if the particular cancer is so passive and easily treatable even if it has spread?
What if it is too aggressive? There is too much talk of surviving. There is too much talk about not doing anything.
What if my grandchild is arriving soon?
These are some real questions which we have no guarantee will/ will not happen.
B: In addition, our treatment preferences and values change when our health changes, at the end of life, and even during periods of stable health. This is because we may or may not be adaptable.
I can’t imagine living with stage 4 cancer –> What if the chemo wasn’t so bad?
I think I can forgo any treatment for this –> How come no one told me the symptoms can be so painful if untreated?
I’ve been going to the oncologist every 6 months -> This is almost like a chronic disease. It is bearable!
Some will be more willing to accept invasive treatment with limited benefit, some may shift their goals from prolongation of life to comfort. As you can see, broad values statement of wanting to maintain dignity or be free from pain are often too vague.
C: To make it worse, your surrogates may use their own hopes, desires and needs to inform their decisions, which may contradict patients’ prespecified wishes. For example, many surrogates report guilt when they cannot honor a patient’s wish to die at home generally because they cannot provide the necessary care to ensure good palliation. Because we understand the need for our surrogate to make decisions on many considerations, many would want our loved ones to have leeway in making decisions for us.
Answer:
These answers have been put forth by many organisations and papers. They are usually done by the primary care doctor and care team, over multiple settings, OR can be done by very motivated patients and surrogates on their own if they prepare well. I will give a brief outline and one example each to start the conversation.
1. Assessing and Addressing Lack of Readiness to Engage in Preparation
“ If you were to get very sick, is there anyone you trust to make medical decisions for you, and have you talked with this person about what is important to you?
“ Are there reasons it is difficult to talk about such things with me or your loved ones”
2. Choosing an Appropriate Surrogate Decision Maker
“ Does this person know that you have chosen him/her for this role? It is important to ask if they are willing to do it.”
3. Checking and Expressing your Values over Time
“ We are often deeply affected by our past medical experiences”
“ Have you seen someone on television or someone close to you experience serious illness or death? “
“ If you went through this situation, would it be worth it to you?”
4. Establishing Leeway in Surrogate Decision Making
“ If your loved ones have to decide for you, they have to think about what you said in the past, but also what the doctors are telling them and what they are able to do. If these are different, this can be very stressful to your loved one.”
“ Are there certain decisions about your health that you would never want your loved one to change under any circumstance?”
“ What is it is too hard for loved ones to provide care for you at home?”
Before encountering this framework, I realised I had a pretty fixed mindset about my own preferences. It never occurred to me that it can change. As I asked myself these questions, I found my preferences shifting in different scenarios, but the underlying values that influenced those decisions have stayed the same. I also realised that this process was mostly a chance to celebrate life, and not all about death.
The main aim of advanced planning, rather than advanced decision making, is to prepare us and our loved ones to work with healthcare workers to make the best possible in-the-moment medical decisions.
Although I can list out all the possible ways we reach our normal lifespan, as a doctor I am never able to make the best decision without consulting you, or your loved ones. And you would never know as well, unless we are able to ask ourselves, over time, what our preferences are and the reasons behind them.
