Dying well IS OUR BASIC HUMAN RIGHT
Dying well means choosing where and how we die; who is with us; what medical interventions we’ll accept that fit our personal values and having a loving support team there right until the end. To die well we need to understand and express our end-of-life choices, know how palliative care works and create our perfect support team.
We can consider that we have put in place steps for dying well if we:
- understand what is happening and what is available so we can make good decisions;
- are able to make choices that are right for us based on our personal life and spiritual values;
- are treated with dignity and respect by all;
- are supported by those around us to have our choices followed through, and
- we feel valued and an important part of our family and/or community.
Many people don’t realise that they have the legal right to refuse medical treatment so find themselves caught up in a barrage of medical interventions that don’t reflect their values and ideals about what constitutes a quality of life.
Worse, if they aren’t in a position to communicate their decisions, their next of kin will have to advocate on their behalf, trying to ‘guess’ what their loved one would want in a particular situation.
Legal Guidelines for Medical Decisions for Dying Well
According to the Australian Medical Treatment Act 1988, ‘a delegated guardian may be required to make decisions regarding:
pain relief or sedation which may have the side effect of hastening death;
the inclusion of Not for Cardio-pulmonary Resuscitation on a patient’s file;
withholding or withdrawing treatment that would, if administered, prolong life;
a treatment plan ‘for palliative care only’, and
refusal of treatment based on cultural or religious grounds which may result in death.”
There are many questions to ask yourself to gain clarity about how you want to spend the last months, weeks and days of your natural life. For example, what are you hoping/expecting will happen if you can no longer feed yourself or manage your own personal hygiene? Do you want to:
- stay at home and hire professional caregivers;
- stay at home and have your family and friends care for you;
- stay at home and have volunteer palliative carers tending to you;
- move in with a relative and have family and friends support them to care for you;
- move in with a relative and hire caregivers to help care for you;
- move to an aged care facility, or
- move to a hospice when appropriate?
Whichever option you choose for dying well will require pre-planning. You need to find out if services are available in your area and discuss your choices with family, friends, caregivers and professionals to see firstly if what you want is possible, secondly to allow time to set a plan that reflects your wishes in place and thirdly, so everyone understands why you made particular choices so they feel OK about following through on them.
When it comes to the time for medical interventions, some may choose ‘life at all costs’ by accepting all forms of medical intervention designed to prolong a life; for others, there may be stages of an illness and life experience that no longer represent a quality of life so they may choose to reject them as part of their end of life medical care. Either way, you need to write down your choices, preferably in an Advance Care Directive.
Whatever options you choose for dying well it is important to:
- write down your wishes clearly in an Advance Care Directive and have your signature witnessed;
- appoint an Enduring Guardian or Person Responsible to advocate for your medical intervention choices when you can’t;
- talk to your doctor about the implications of the choices you have made, and
- talk to your family and friends about your choices and explain to them why you have made them.
Remember, dying well is our human right, and we have the power to ensure that we do so-but it requires pre-planning!