Understanding your healthcare options can be overwhelming and challenging. Below we have shared some of the most common clinical end-of-life considerations to help you make the most informed decision about what you would want to request or refuse.
What is an Advance Healthcare Directive?
An Advance Healthcare Directive is a legally-binding document that allows you to state what treatments you would refuse or request if, at a later time, you couldn’t express your choices. For example, if you were injured in an accident or became very ill. An Advance Healthcare Directives also allows you to appoint someone you trust to be your Designated Healthcare Representative – to advocate for you and uphold your choices.
You must sign your Advance Healthcare Directive with two witnesses present, who also must sign. The Advance Healthcare Directive included in the Think Ahead Planning Pack clearly informs you who can be a witness and how to sign properly.
Refusing or requesting treatments
In your Advance Healthcare Directive, you can refuse or request treatments.
- Your refusals are legally-binding, meaning your healthcare team must follow your directions.
- Your requests are not legally-binding; your healthcare team must take your preferences into consideration but can deny them.
At end of life, we know that many, many people receive unnecessary treatments that do not necessarily improve quality of life, and in fact may cause additional suffering. You must be very explicit in your decisions when you record your treatment refusals, including language acknowledging that refusal of treatment may lead to or hasten your death. In Think Ahead’s Advance Healthcare Directive, we guide you to word your refusals correctly so that they are legally-binding.
What is basic care?
Basic care includes shelter, warmth, basic hygiene, and the offer of food and water by mouth. You cannot refuse basic care in an Advance Healthcare Directive.
What is palliative care?
Palliative care is holistic care that focuses on relieving pain and other symptoms when you have a serious illness, regardless of age, diagnosis, or stage of illness. This type of care aims to improve the quality of life for people with life-limiting illnesses and their families.
It is often offered alongside other treatments. Receiving palliative care does not necessarily mean you are dying. Specialist palliative care professionals are experts in the management of pain and other symptoms to include breathlessness. As a result, you may only spend a short time interacting with these professionals and/or you may move in and out of requiring specialist palliative care services depending on your needs.
What are ‘life-sustaining treatments’?
Life-sustaining treatments replace or support a bodily function which is not working properly or is failing. A person may have a treatable condition, and life-sustaining treatments are temporarily used until the body can resume its normal function again.
However, sometimes the body will never regain that function. In such a case, life-sustaining treatments are what keeps a person alive and removing those treatments may result in or hasten death.
Life-sustaining treatments include, but are not limited to, artificial nutrition and hydration (such as feeding tubes), receiving oxygen, and CPR. Stay tuned as we update this page with video guides to your treatment options.
CPR
Cardiopulmonary Resuscitation (CPR) is an attempt to restore spontaneous circulation in an individual whose heart has stopped beating, and whose breathing has stopped. Although most people have heard of CPR, it is only effective in a minority of cases, and more so in younger people. It is frequently associated with complications, such as stroke, in survivors.
CPR includes chest compressions, attempted defibrillation with electric shocks and the injection of drugs and ventilation of the lungs.
Sometimes, CPR is not appropriate or lifesaving, especially if the person is very unwell, their illness is advanced, or death is unavoidable. If you have uncertainties around CPR, discuss them with your GP/Specialist. Refusing CPR does not result in the denial or withdrawal of other treatments that are thought to be helpful.
Making decisions, communicating them, and recording your wishes about CPR will help avoid inappropriate CPR as much as possible. You can record your wishes on CPR in your Advance Healthcare Directive, for example:
- I want CPR if my doctor believes it to be beneficial.
- I do not want CPR and understand this decision may cause my death.
