Living Wills
The Financialist • Issue 91 • October 2006
BY BRYSON MILLEY
"SOMETHING JUST DOESN’T FEEL RIGHT…" These were the last words spoken by my sister-in-law the morning of May 18, 2006. No one knew then what we would be facing in the days that followed, we just knew that we would see a part of life that we often refuse to acknowledge.
Kelly, aged 38, had a severe stroke and has been left with permanent damage to her brain stem. Damage that has left her fully paralyzed, except for the use of her eyes. Over the last 6 months she regularly required a ventilator to help her breathe, and frankly, it was the ventilator that kept her alive for many days. Even without the ventilator, she now breaths through a tracheotomy and is fed through a feeding tube into her stomach.
Yes, this has caused a great amount of heartache and sadness for Kelly, her husband Scott, her children, extended family, and friends. But it has also caused all of us, and many who have heard the story, to contemplate our own health and mortality. In particular, what wishes we would have if put in the same circumstance. Unfortunately, all too often these thoughts are not relayed to family and friends, and even more rarely are they put to paper.
A Living Will, sometimes called an "Advance Directive," is a document containing your wishes about future health or personal care. Living Wills are made when you are able to understand treatment choices and appreciate their consequences. A Living Will only takes effect when you can no longer understand and appreciate those treatment choices.
It is generally agreed that a Living Will should include two parts: a Proxy Directive and an Instruction Directive.
The Proxy Directive specifies who you want to make decisions on your behalf if you are unable to do so. This person should be willing and capable of making those decisions.
The Instruction Directive specifies what health care or personal care choices you wish your proxy to make in particular situations. Health care decisions are based on diagnostic, therapeutic, preventive or palliative information and situations. Personal care decisions are based on how and what kind of daily life you would like to maintain.
In both circumstances (health decisions and personal care decisions) it is important to keep in mind that there are many different situations and solutions that may be presented. As a result, an Instruction Directive is not "one-size fits all". Instead, it is a document where multiple ideas are outlined. To accommodate this, the University of Toronto Joint Centre for Bioethics has created a Treatment Table. The table covers treatment possibilities (ie. CPR to tube feeding) and compares these with the increased severities of health ailments (ie. current health to severe dementia).
The table’s purpose is to allow a person to find the areas where they find themselves crossing from wanting treatment/care, to not wanting treatment/care. Variables such as recovery possibilities and quality of life come into play. The higher the probability of healing/survival, the higher the probability that one will want to receive care at all levels. The point is to try and clarify for you and your proxy when you no longer wish to receive care because the life to be led will not be satisfying to you.
While completing the Living Will process, it is generally recommended that it be done with (or at least shared with) your doctor and an experienced lawyer. Your doctor will be able to ensure your understanding of what happens with each treatment.
A Living Will is a legal document with serious legal implications. Having experienced legal counsel review and approve the document may help avoid any court challenges that the Living Will may experience if there is a disagreement between your proxy and your family regarding your intentions and care solutions.
Once your Living Will has been completed to your satisfaction, it is very important that it be shared and kept with those that will be involved if the time comes for it to be acted on. It is also recommended that you discuss your intensions with these people so that they can hear your thoughts directly from you. It will bring added clarification and allow them to ask whatever questions they may have.
The ultimate goal of a Living Will is to ensure that your healthcare wishes are carried out. As an additional benefit, it allows those who care about you to avoid stress about the uncertainty of what you would like to have happen. In these circumstances your loved ones will be feeling a large amount of emotion, and making decisions may be difficult. Having a Living Will completed will make it much simpler for all involved.
The circumstances surrounding my sister-in-law have caused many of us to really think long and hard about what we would want if faced with a similar situation. The level of emotion has been high. Watching my brother-in-law, Scott, struggle with the many care decisions for Kelly has given me a strong opinion about arranging a Living Will soon. Most often, quick conversations in the midst of a story are not enough.
At this time Kelly is able to competently answer yes/no questions regarding her care and this has relieved some stress for Scott. However, this was not always the case and the weight of those decisions Scott made was obvious. And while yes/no answers help, written instructions and conversation would definitely be a lot better.
For further information regarding Living Wills and the process to complete a Living Will, please visit the University of Toronto Joint Centre for Bioethics (www.utoronto.ca/jcb) or contact Dr. Kay Costley-White (kaycostley-white@netidea.com).