The High Court has recently ruled that an acutely ill and profoundly disabled 10 year old girl in State care should not be resuscitated or receive emergency life-saving intervention.  Tragedy can strike anyone at any age, and provision for advance consent is being made in the Assisted Decision- Making (Capacity) Bill 2013, which has completed Committee Stage and is expected to be passed by the end of the year.

The Act provides for supported decision-making to assist vulnerable people with limited decision-making capacity and for the first time, to make an Advance Care Directive.  This will allow you to plan your medical treatment and ensure that your wishes are taken into account to the greatest extent possible. It is also important to carers and healthcare professionals.

This will:

  • Enable you to be treated according to your own personal choice;
  • Protect family and friends who take on the difficult task of supporting you
  • Provide healthcare professionals with important information about persons in relation to their treatment choices.

We have prepared a number of frequently asked questions relating to advance care directives. If you would like some more information, feel free to contact the author, Des Rooney.

Do I always have a right to refuse medical treatment?

Yes.  A competent adult has an absolute right to refuse medical treatment even if it leads to death.

What happens if I lack the capacity to express my wishes (for example due to Alzheimer’s, dementia or coma)?

A doctor will usually consult with your family in arriving at their clinical judgement as to what is in the “best interest of the patient”. For instance, if death is imminent, a doctor is not obliged to maintain treatment which is futile or disproportionality burdensome. 

So would my treatment ultimately be the Doctors decision?

Yes.  However, the Assisted Decision- Making (Capacity) Bill 2013 will enable you to make advance decisions regarding your medical treatment in the event that you lack capacity at a future date. 

Why would I ever wish to refuse medical treatment?

Advances in treatment means that life can be sustained artificially, where previously nature would have taken its course.  You may prefer to forego treatment if it only prolongs your life without any curative effect, or if you are in constant unrelenting pain. 

What type of medical treatment would usually be envisaged?

This can vary from a blood transfusion or the insertion of a feeding tube to cardio pulmonary resuscitation, artificial ventilation, specialised treatment for particular conditions such as chemotherapy or dialysis, antibiotics and artificial nutrition and hydration.

Could my Directive result in my not getting basic care?
No.  A Directive does not extend to refusal of basic care.  This includes warmth, shelter, hygiene and appropriate nutrition/hydration measures.

Can I appoint someone to make such decisions?

Yes.  Your Directive can include the appointment of an individual to act as your healthcare representative whose function is to consult with your doctor in clarifying your intentions as expressed in your Directive.  This person does not need to be your next of kin.

So what do I do now?

Nothing as yet. When the legislation is enacted, it envisages a code of practice and guidelines (particularly in the case of a “do not resuscitate” directive).