Everyone Has The Right To Die Well

posted in: Death & Dying | 0

right to die wellThis article was written by Molly Carlile and appeared in The Daily Telegraph on November 10, 2015 12:00am

–  As someone who has worked intimately with dying and grieving people for almost 30 years, I am totally frustrated that, since the Andrew Denton lecture last Monday night, the whole conversation we need to be having about death in our community has been reduced to this one tiny piece of a huge jigsaw of improving end-of-life care, purely because it has celebrity endorsement.
I both admire and respect Andrew Denton, however it seems to me the whole conversation in the print, radio and TV media has been hijacked and has become wholly and solely about euthanasia being the universal panacea to a “good death”.
I understand Denton’s motivations and rationale, however what we urgently need is broadbased conversation about how we do death and grief in this country. This is not an argument about euthanasia, it should be a conversation about how we put well-resourced, collaborative systems in place to cater for the ever growing demand from the community for exemplary end-of-life care for all Australians.
I refuse to be entangled in the narrow focus of the debate as it now stands. What I want to see is an open, engaging and collective conversation about all elements of death, dying and grief.
That’s not to say I object to people having choice, I don’t, but the conversation we should be having is far more extensive and gets very little “airplay”.
Issues such as how do we de-medicalise death and return ownership and control to the individual and their trusted support networks?
How do we put a stop to futile treatment being imposed on people because they feel unable to object? How do we get specialist palliative care services, acute health, aged care and community care working together in a more effective way to cater for the individual needs of our dying and grieving community members?
How do we create meaningful rituals to humanise after death care and ensure grieving families are not at the mercy of others who think “they know best”?
How do we make advance care planning the norm rather than the exception and how do we ensure there is a national legislative process that is consistent so health professionals are mandated to carry out the wishes contained in these documents?
How do we embed death literacy and normalise death in primary and secondary school curriculums and in all undergraduate health professional training?
How do we normalise death in the wider community so that people feel comfortable to discuss it and communities are empowered to support their dying and grieving members?
How do we ensure kids aren’t excluded from all of the practices around death, such as the bedside vigil, funerals and memorials?
There are multiple individuals, organisations and communities trying to broaden the conversation about euthanasia, but we get no airplay because death isn’t “sexy”, says Molly Carlile.
How do we ensure people die in their “place of choice” and don’t end up dying in an Intensive Care Unit or Accident and Emergency Department against their wishes because the people caring for them panic at the last minute or are completely exhausted and don’t have the support they need to keep the person at home?
How do we create meaningful rituals to humanise after death care and ensure grieving families are not at the mercy of others who think “they know best”?
How do we address the growing trend of well intentioned, community “death midwives’’ (however named), to ensure they are adequately trained, supervised and supported before they start working with vulnerable families?
These are but a few questions from the enormous list of issues that are currently impeding the standard of end of life care in this country … but are they being included in the wider conversation? No!
Why? Because the media is only interested in a “headline” that grabs the public’s attention and what we need in this space is an open and informed dialogue that enables people to “die well” as defined by them.
There are multiple individuals, organisations and communities trying to broaden the conversation, but we get no airplay because death isn’t “sexy” — euthanasia for some reason is.
It would be nice to think others might join the movement towards improved funding, compassionate and community supported death, in the person’s place of choice, respecting their values and wishes and caring for their relatives afterwards.
This is the conversation we need to be having.
Molly Carlile is an acclaimed palliative care activist and author