Why you need an Advance Health Directive
Chris Nöthling is Associate Aged Care Adviser with Affinity Aged Care Financial Services and author of Doing the Right Thing by Mum and Dad: Residential Aged Care for a Loved One. He is an Accredited Aged Care Professional, who has developed a reputation for helping families navigate the complexities of the aged care system.
Gilbert is 93 and has been getting progressively frail for the last 15 years. His eyesight is nearly gone; he struggles to speak and has been living with incontinence for the last five years. Two years ago, his family went through the process of finding an aged care facility for him. The home has treated him well, and he appears to be happy with his living arrangements. Last night, his health took a turn. The facility called his family early this morning to inform Gilbert’s condition had declined overnight, and he is struggling to breathe. They suspect he has pneumonia, and they are about to call for an ambulance to transfer him to the emergency department at the local hospital. His family jumps into their car and rushes to meet him at the hospital. The reception room is a scene of hectic activity. They introduce themselves to the medical registrar on duty, who lets them know they have already admitted Gilbert and have run blood tests and a chest X-ray, which confirm he has pneumonia, and the infection has spread to his blood. The registrar introduces them to the attending physician, who advises Gilbert’s kidneys are failing. He needs a lot of oxygen. He is incoherent and lapsing in and out of consciousness, and they are afraid he may go into cardiac arrest.
The doctor advises there are several things they can do for Gilbert. They can put a tube down his throat to help him breathe. They can attach a machine to his kidneys to filter the toxins from his blood, and they can fill his veins with tubes and lines and attach him to life support. If his heart stops, they can perform CPR by pressing with all their weight onto his sternum and pushing. To do this effectively, they will break some of Gilbert’s ribs, because if they don’t push hard enough, the heart doesn't pump blood to the body, and Gilbert will die. The doctor says, doing CPR on an elderly person causes enormous trauma to their chest with a less than likely outcome of success. The most likely outcome will be they crack Gilbert’s ribs, and his final moments are traumatic. He will be surrounded by doctors, not his children. It will be frenetic, traumatic, and painful.
Doctors and other medical professionals have an obligation to do everything to keep Gilbert alive, even when there is only a chance he may recover. If Gilbert were conscious and lucid, he could instruct the medical team to stop their intervention, make him comfortable, and create a safe environment for him to go. He could ask them to give him something for the pain, bring his favourite meal, and call for his family to visit him one last time. But Gilbert is incoherent and lapsing in and out of consciousness, so he can’t speak for himself.
In the absence of the patient speaking for themselves, the medical specialists must do everything they can to keep the person alive. An Advance Health Care Directive speaks for you, when you cannot speak for yourself, to advise the medical team of your wishes, regarding your healthcare. Just to be clear – your Advanced Health Care Directive cannot ask your doctors to commit a criminal offence. A request for euthanasia would not be followed, as this would be in breach of the law. It is a criminal offence to accelerate the death of another person by an act of omission. It is also an offence to assist another person to commit suicide.
An Advance Health Directive gives a person confidence their wishes about health care will be carried out if they cannot decide for themselves. This includes their wishes to refuse medical treatment if they do not want to be put on life support or do not want to have other forms of medical intervention. An Advanced Health Care Directive could include a typical clause like: Everyone responsible for my care should initiate only those measures considered necessary to maintain my comfort and dignity, with particular emphasis on the relief of pain. Any treatment that might obstruct my natural dying should not be initiated or be stopped. Unless required for my dignity and comfort as part of my palliative care, no surgical operation is to be performed on me.
The Advanced Health Care Directive may be more specific. It could specify conditions where certain types of care are not called for. It could list conditions, such as the terminal phase of an incurable illness, a persistent vegetative state, permanent unconsciousness (in a coma), or serious illness or injury from which the person is unlikely to recover if they can live without life-sustaining measures. In these circumstances, the directive could instruct on the patient’s preferences, regarding cardiopulmonary resuscitation, assisted ventilation, artificial hydration, artificial nutrition, and antibiotics.
Anyone can make an Advance Health Care Directive, as long as they are over 18 years of age and capable of understanding their directions and foreseeing the effect of those directions. There are formalities required and some choice, concerning who should be involved. It is not necessary to involve a health professional in preparing an Advanced Health Care Directive, but there may be several advantages in having a doctor or other health professional involved.
This is an extract from Chris Nöthling’s Doing the Right Thing by Mum and Dad: Residential Aged Care for a Loved One.
Related links:
Spiritual care at the end of life can add purpose
How to talk to your parents about aged care
Tips to cope with losing independence with age