Advanced Health Directives
I was recently asked about the legal standing of an Advanced Health Directive and answered at the time “every state has legislation… I think”. Looking it up later I found I was wrong. Not every state in Australia has legislation directly related to AHD’s although it is an absolute in common law that an individual has the right to refuse treatment as long as they have proven capacity to make such a decision. It is the situation where the patient has lost capacity that was the key issue in this discussion. The nurses involved in the chat were frustrated and a bit fearful about directives that refused treatments or heroics and they were not entirely comfortable with “Do not resuscitate” orders as they had heard of or experienced family conflicts at these times. So I had a bit of a look at the issue.
All states do have statutes enabling the appointment a guardian or of a substitute decision maker for medical treatment.
In Victoria the patient can write a “refusal of treatment” certificate, but only for a current illness, which does not have to be terminal but the legislation also allows appointment of an agent/substitute decision maker who can refuse treatment for an incapacitated person.
In South Australia legislation; The Advance Care Directives Act 2013 provides for a person 18 years or over to write an Advance Care Directive recording their wishes and instructions for future health care, living arrangements and personal matters and/or to appoint one or more Substitute Decision Makers.
The same in the Northern Territory, there the legislation is the Advance Personal Planning Act 2013 which allows a person 18 years and over to make an advance personal plan with decisions about future healthcare, statements about their views, wishes and beliefs, and appoint one or more persons as a substitute decision maker.
In Queensland the Powers of Attorney Act 1998 has an Advance Health Directive for refusing treatment. This Act and the Guardianship & Administration Act 2000 allow for others, including an Enduring Power of Attorney/agent to consent to withdrawing or withholding life-sustaining treatment.
In New South Wales the Guardianship Act 1987 states that a person can indicate by whatever means, that he or she does not want treatment to be carried out. In NSW advance health care directives are informal mechanisms that are not supported by legislation. Despite this fact, there are ways in which they may have legal force or limited legal effect.
In Western Australia, The Guardianship and Administration Act 1990 was amended by the Acts Amendment (Consent to Medical Treatment) Act 2008 to include an Advance Health Directive to refuse treatment for a current condition or terminal illness as well as the provision to appoint an Enduring Power of Guardianship as a substitute decision maker.
There is no legislation in Tasmania that provides for statutory advance health directives. However, common law principles around advance health directives are applicable.
During the discussion and my later readings what was surprising was the amount of anxiety these directives cause health professionals. Putman-Casdorph, wrote, “Studies have found that nurses identify the benefits of advance directives and have positive attitudes but lack knowledge and confidence to effectively discuss end of life issues with patients and families. The literature related to nurses’ attitudes about advance directives points to an unmet need for increased knowledge and confidence to address barriers and ethical dilemmas in end of life care” (2009).
At the time of my conversation there was discussion about Power of Attorney documents and about disputes with families who disagreed with decisions to withhold or cease life maintaining interventions. One nurse recalled a case that went to court where health staff disregarded an Advanced Directive. There has been a number of such cases, often involving administration of blood products during surgery in the face of clear written and verbal refusals. An advanced health directive only comes into action when the author does not have either the ability or capacity to make their own decisions. This may be a temporary or permanent incapacity.
First thing in the readings was getting to grips with the various terms used. Advanced Directive is a term often used to encompass documents such as a Living Will, powers of attorney and at times verbal claims by family members or even client statements. A source of confusion is that a regular Power of Attorney does not extend the right of someone to make health decisions. It is aimed at financial management.
In Australia there is a general power of attorney which is a legal document where a person of choice is appointed to manage assets and financial affairs if the individual is unable to do so due to illness, an accident or absence. This usually is limited to a specific time frame and is valid as long as the person making the nomination has capacity for their decisions. This does not give the power to make medical decisions.
An enduring power of attorney is where the appointment of a person to manage financial and legal affairs is intended to carry on should capacity to make their own decisions is lost. Again this power does not extend to medical decisions. You might hear the term “proxy decision maker” or a “substitute decision maker”.
A medical power of attorney allows a person to appoint someone to make decisions about medical treatment if they lose mental or physical capacity to make their own decisions.
Some people establish an Estate Plan, a legal plan drawn up by a lawyer which includes their will as well as any other directions on how assets are to be distributed after death. An Estate Plan includes documents that govern how the person wishes to be cared for, medically and financially, should they become unable to make their own decisions in the future.
An advance care directive (ACD) is a document in which a person gives instructions about their future health care; it comes into effect only when the person is no longer capable of making their own decisions (NSW Committee on Ageing 1999). ACDs may also be referred to as ‘living wills’. Typically the directive is designed as a form with a series of questions about either core values or levels of treatment that the person would want under certain conditions. It is usually suggested that people complete these with their doctor and lodge copies with the doctor as well as close family members and their local hospital.
A Living Will is often a statement the patient makes in writing that describes their wishes pertaining to how or where they wish to die, and it becomes active when a person has been deemed incapacitated (vegetative state) or terminally ill. These are not always overseen by a lawyer nor witnessed but they state a person’s wishes and these are accepted as directives about what a person will or will not consent to in a medical situation. Like the Advanced Health Directive these only come into effect when the person has lost their cognitive ability and is unable to make their own decision.
Each state except NSW has an official form for an Advanced Health Directive called by various names but essentially identical.
In the real world, in most situations, the closest family member/s are asked to make decisions on behalf of an incapacitated patient. In the majority of cases, this is an appropriate approach as close family are the people most likely to know and respect the wishes of the patient. What causes health workers problems is that people change their minds, they may not communicate their wishes to everyone in the family and over time circumstances and anxieties alter. What may have been a serious intent and documented choice 5 years ago is no longer a priority worry or relevant with a different diagnosis or health issue.
The classic problem nurses face is where the most proximate family member has taken responsibility for care and decisions often for years but in the terminal situation another family member comes onto the scene with different expectations and insists on heroic interventions. Most nurses’ have witnessed these family conflicts and the family can be torn apart with disputes lasting lifetimes.
In the literature there are a number of authors (Ditto et al 2001; Martin et al 2000; Teno et al 1998) who suggest it is better for staff focus on Advanced Care Planning rather than worry about legal documentation. Health facilities can avoid both legal and family problems about end of life decisions by working to develop advanced health care plans. On admission the client is invited to make their wishes known and these are documented. Families are encouraged to share the information and communicate with each other and staff to ensure matters are clear. It is worth considering that over time in a long stay environment these plans should be revisited and if necessary revised. An advance care planning program used in Australia, completed a randomised controlled trial of its approach and showed that advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives (Detering ,Hancock, Reade & Silvester, 2010) I think it would achieve this for health staff as well.
Making advanced care planning part of your care strategy can eliminate a lot of problems and anxieties when decisions have to be made. Forms may be unclear and ambiguous when it comes to making vital decisions about a person’s care. Sometimes referring to client’s written documents it is difficult to really work out a client’s wishes. Particularly when there has been no legal or medical guidance. Family members may be unaware there was a document or do not agree with what is in the directive and want to overturn it. How we archive and keep these records can also be a problem especially if there has been a long time between admission and terminal decision making. There is usually no system for storing and retrieving forms easily and consistently.
In spite of the known problems with AHD’s they do provide an individual with control over future health decisions and these do have legal standing. Communication and clarity about these choices for future health matters is part of our advocacy role as it is often the nurse who is there at the time of decisions about treatment and actions to maintain life. No matter what the situation it is essential that care and palliation remains the nurses’ priority and choices to reject or refuse treatment options can never remove the absolute requirement to continue care and comfort in a terminal situation.
There are some fabulous webinar recordings by Pam Savage regarding Nurses and the Law on the Nurses for Nurses Network . The Nurses for Nurses Network provides good information and CPD on an array of nursing topics in a range of easy learning ways including webinars and quizzes on the latest information that Nurses need to know – remember the Nurses for Nurses Network was created by Australian Nurses for Nurses ! www.nursesfornurses.com.au