Preparation for end of life, from a legal perspective, requires three considerations.
The first outcome to consider is loss of life. After death what survives are assets, liabilities and relatives. These can all be managed in a will.
The second eventuality may not happen but it is worth providing for – loss of mental capacity. As we grow older it becomes more likely to happen. An enduring power of attorney, legal since 1996, is now automatically registered on creation.
How we die, until now, has been off script. Part 8 of the Assisted Decision Making (Capacity) Act 2015 is about to change all that. This is the third conversation.
Since an enduring power of attorney cannot grant power to an attorney to make a treatment decision it must be laid out in an advance healthcare directive (AHD). The manner in which we may predetermine how we wish to be treated in certain circumstances will now be become legally enforceable.
The principle is grounded in the already established right to refuse treatment and is allied to but not quite married to the right to choose. That right remains a qualified one.
Treatment decisions have different purposes. They can be therapeutic, preventative, diagnostic or palliative. The objective is to achieve what is in the best interests of the patient. The test, of its nature, is a subjective one. To be objective the AHD should be as specific as possible.
There are ground rules:
The decision maker must be over 18;
Solicitor input is not required;
She/he must have capacity although no formal assessment is required;
The decision maker may be supported by a decision making assistant but not a co-decision maker;
The document must be in writing and have two witnesses;
It must contain an express statement regarding life sustaining or lifesaving treatments.
Requests for treatment are not legally binding but must be taken into consideration. A refusal of treatment is legally binding if it is valid. There are exceptions. Basic care includes warmth, shelter, food and essential nutrition but does not include artificial nutrition.
A designated healthcare representative (DHR) can be empowered to advise and interpret the decision maker’s will and preferences. She/he may also consent to or refuse treatment within the boundaries already mentioned. A healthcare professional is obliged to consult with a DHR. Should the healthcare professional fail to act in accordance with direction of the DHR there is statutory protection from liability provided there are reasonable grounds for believing an AHD was or was not valid.
Template forms may be provided by the Office of Decision Support Services (DSS). One already exists through the Irish Hospice Foundation under the title of Think Ahead or endoflifeireland.ie for a shorter version. It has been available since 2016. There is no single mandatory form and medical or legal input is not a requirement. Do not attempt resuscitation (DNAR) is a common direction and does not have to be in a particular form.
It is anticipated that regulations will be published and a register set up under the auspices of the DSS, although it will not be mandatory to register. Codes of practice have been developed over the course of past 8 years since the enactment of the Assisted Decision Making (Capacity) Act in 2015, 14 in all, and these will also be published by the DSS.
While a will is a private document and is activated when death takes place the same cannot be said of an enduring power of attorney or an advanced healthcare directive. These are both intended to be read when circumstances dictate during the lifetime of the donor or decision maker. They also involve a level of consultation and active input from third parties.
Although none of these documents is compulsory it may be said that the fulfilment of these exercises is an act of benign unselfishness designed to avoid conflict or confusion among loved ones. We have become accustomed to the first two conversations but the third one is new and is thought provoking. We are witnesses to the suffering of others and now have the opportunity to address our own. Some will be guided by self-conscience and others by divine scripture.
The autonomy of the individual is not secure until, at the end of life when death is imminent, we are allowed to seek voluntary assisted dying. That choice is for another day but it is a noble aspiration and our legislators should be encouraged to strive for it.
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