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Palliative care and advanced directives |
An advance directive (a living will) is a witnessed document that sets out the wishes of a patient in relation to treatment decisions in advance, ie. it is written at a time of ‘wellness’ in preparation for a time when the person is unable to consent to treatment.
They were originally devised by Louis Kutner (not surprisingly an American lawyer) who first proposed the idea in 1969 in America. It was seen as a simple device to allow patients to say no to treatment in an increasingly technological age. Thus, it was devised as a document that allowed patients to refuse treatment rather than to agree to treatment if they were no longer able to consent.
In Queensland, South Australia and the Northern Territory, advance directives are legally binding. In New South Wales, however, they are not a legal document but are seen as strongly persuasive to health care providers and the Guardianship Board, particularly if they are consistent and up-to-date. There is no standard format in NSW but the information that can be included are things like who to contact for advice, who not to contact, and the types of medical treatment to be refused/consented to, eg. parenteral feeding, artificial ventilation, cardiopulmonary resuscitation, etc. The patient cannot refuse basic care nor can they endorse assisted suicide which, of course, is illegal.
Example
My first experience with an advance directive was as a junior doctor in the UK. Mike was a 45-year-old with advanced AIDS. He had written an advance directive stating that he did not wish to have intravenous antibiotics as a life-prolonging treatment should he become too unwell to make his own clinical decisions.
Unfortunately, Mike became quite unwell with pneumonia, which had led him to become quite confused. Despite his confusion, however, he was adamant he wanted to receive treatment for his pneumonia, which was a direct contradiction to his advance directive. The dilemma was further compounded by his next of kin, a solicitor, who was adamant that Mike should not receive antibiotics despite his requests when he became unwell and confused.
With any sort of treatment dilemma, particularly if there are conflicting proposals, it seems the best way forward is always with clear, round-table discussions, communications and trying to keep the process as informal as possible without having to resort to solicitors, lawyers and the Guardianship Tribunal.
In the above example, Mike was quite consistent with his requests and so did receive intravenous antibiotics. This did improve his symptoms and confusion, and he was grateful for his treatment when well again, although he did only live for a few more weeks. The situation was quite stressful for everyone involved and the outcome could equally have gone the other way, ie. Mike could have had his treatment and considered it ‘battery’ that his advance directive had not been followed. (In the UK advance directives are not legally binding either). His next of kin was very traumatised by the whole experience, as she believed, like everyone else, she was only acting in his best interests and thereafter had little to do with his care.
Therefore, it can be seen that there are benefits to advance directives but also disadvantages.
The advantages of advance health directives
1. Encourage communication about end-of-life decisions.
2. Give directions to treatment decisions when the patient is no longer able to decide for themselves.
3. Ensure that the will of the patient is being met, ie. patient autonomy is respected.
Disadvantages
1. Patients may change their mind about what they want when they are unwell, ie. the healthy do not make the same choices as the sick.
2. They can be difficult to interpret in the real world, eg. the advanced directive scenario may not match the current medical scenario.
3. Discussion about advance directives can provoke anxiety particularly if not sensitively handled.
4. Where to store them, ie. how do we know that a patient admitted to accident and emergency department in a coma has an advance directive?
My more recent experiences with advance directives have been in the last fewo weeks, where I have come across three patients with end-stage disease who have written advance directives concerning their care. In each instance, it was not the document itself but the prior discussions with patients and families about general attitudes to health care and quality of life, which guided clinical decision-making when patients were no longer able to communicate their wishes.
In palliative care, I think one of the greatest luxuries I have as a doctor, is the time available for consultation with patients and families to discuss these types of issues. I am aware this is seldom available in the community and hospital setting. However, GPs are often in the position of knowing patients for many years and caring for them in their final illnesses. If patients are admitted to hospital without advance directives and are unable to give consent about treatment or treatment withdrawal, it is always worth contacting the GP, as well as the patient’s family and next of kin, to determine a management plan.
There are no plans, as far as I am aware, to make advance directives legally binding in New South Wales. There are, however, ‘Guidelines for Dying with Dignity’ that are currently being reviewed by NSW Health and the document can be reviewed on www.health.nsw.gov.au and links followed. They are based on the principles of
1. Respect for human life
2. Patient autonomy
3. Consultation, including family
4. Access to health care and professionalism.
They are useful guidelines, but if you have a difficult ‘end of life’ ethical dilemma, whilst far from being an expert, I would be more than happy to discuss such cases with you. I consider this to be part of my role.
Joanne Doran is the area medical director of palliative care. She is based in St Vincent’s Hospital, Lismore, NSW, Australia.
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