One of the most frequent questions I am asked when I give public lectures on advance serious illness planning is, “What if I don’t have anyone to ask to represent me when I am seriously ill?” That’s a problem for which I don’t have an easy or satisfactory answer. The problem is of course that 95% of the time, you will be unable to think and speak for yourself when you are seriously ill. You have to rely on others to make decisions for you. These are important life and death decisions and may impact your quality of life and ability to look after yourself.
What happens if a representative is not appointed?
If there is no legally appointed decision-maker, the medical team will seek out a next-of-kin. They will assist doctors to make these important treatment decisions. If there are no next-of-kin, an application can be made to the Public Guardian and Trustee office for assistance. However, these people are strangers and won’t know you nor your wishes. Moreover, the process will take time and may cost you money in the form of court fees. In this context, it is unlikely the medical team will withhold or withdraw the life-sustaining treatments. It is more likely that you will remain on life-sustaining treatments for considerable time until a court-appointed decision-maker can get involved. The risk is that you survive your serious illness but remain incapacitated with a significant reduction on your quality of life.
“Quality of life and my independence within it is important to me. I am the end point of my familial twig in my tree of life. I live alone with no dependents and no close family or friends to rely upon. I am also a control freak with trust issues and having to depend on others, especially ones not close to me (who will be doing it out of obligation) or for whom it is a job to take care of me, is simply not appealing. I came into this world alone and I will leave it the same.”A Plan Well Guide user with no representative that I will call Mary
Options for Consideration
I wish Mary understood the importance of ‘stretching’ a bit to find someone that knows her and can help her out in this matter. If you are in a similar circumstance to Mary, consider the following options:
Explore Your Social Network
Celine Dion said it best, “All by myself, I don’t want to live by myself anymore!” Think about your social network, is there no one that you can approach to be your legally appointed representative? Maybe you are reticent to ask someone because you don’t want to be a burden on them. In our experience, asking a friend to be your representative can be a positive experience that will lead to meaningful conversations and a deeper relationship (see box). If you would like some coaching on how to have a conversation with a friend to enlist them to be your legally-appointed representative, reach out to us for assistance at firstname.lastname@example.org.
You may also consider appointing a trust company or a legal or financial professional with the skills to manage finances and property. You will need to pay fees for these services. Also, these options may only be available to you if your property is over a certain value. If you need to ‘hire’ someone to do this, speak to a lawyer regarding inserting language in your planning documents that will allow these professionals to be paid for their services.
Consider an Advocate
Consider separating out the role of an advocate from the role of a legally-appointed representative. Is there someone in your circles (say a neighbor or distant relative or your family doctor) who will advocate for you? They could bring a record of your “Dear Representative Letter” or “Dear Doctor Letter” to the awareness of the future treating team so at least your recorded values and preferences can be considered. These individuals may not be legally-appointed to represent you in the legal document but can still advocate that your wishes be considered.
If anyone reading this has other or better suggestions on how to help people in Mary’s situation, I would love to hear from you. As society ages and becomes more and more isolated, I expect this problem will only get worse. At Plan Well Guide, our goal is to help our clients to pick the best people to serve in these capacities and to educate them on their role and responsibilities. We provide this service to you so you can have peace of mind that if you are unable to look after yourself, your appointed representative will be able to step in and take care of you in a way that would be acceptable to you.
For more on advance serious illness planning and equipping your representative to best represent you, see www.planwellguide.com