“What matters most?” This is the theme for Australia’s National Palliative Care week from 19-25 May. It aims to encourage people to plan ahead as their life is nearing its end.
In doing so, it’s important to discuss care arrangements with loved ones and health professionals and consider what is most important.
What is palliative care?
Palliative care is family-centred support for someone who is approaching death with virtually no chance of being cured. The primary aim is to optimise quality of life, particularly in the final weeks and days.
It is “care that helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness,” says Palliative Care Australia. It can be given at home or in a hospital, hospice or aged care facility.
Importantly, it embraces individual needs on physical, emotional, social, cultural and spiritual levels. It also allows for the needs and bereavement of loved ones.
Services include relieving pain and other symptoms like breathing difficulties, facilitating discussions with family and friends, and providing counselling support and resources to assist care at home.
Palliative care involves a team of professionals who can cater for different needs, extending to referrals for home help, financial support and respite care services.
Health professionals might include a GP, aged care worker, cardiologist or other specialist who can provide support when symptoms become hard to manage.
Not only is palliative care the most compassionate way to support dying patients and their families, it has major cost benefits as well.
Reducing needless hospital transfers and medical interventions can help patients receive quality support, dignity and respect, while making significant cost savings, according to Australian research.
Yet, while over a third of deaths occur in aged care facilities, only a small proportion of residents are formally assessed as needing palliative care.
Talking about death tends to be taboo in our society. But we are all confronted with it at some stage. Embracing discussions about death is important to help people come to terms with their feelings about dying and how they want to deal with it.
Some groups are proactively creating opportunities for people to think and talk about death.
The organisation Portable says, “a good death is a human right, and we need to be able to articulate what this means for ourselves and communicate it outwards.” Achieving this, they advocate, will need a human-centred approach in policy and social engagement.
Death Café facilitates spaces where people can “drink tea, eat cake, and discuss death”. So far, they’ve held more than eight thousand cafes in 65 countries and provide opportunities for people to host their own.
The GroundSwell Project has created a “Dying to Know Day” on 8 August to help break the taboo and equip people “to care for themselves and each other through death, dying and loss.”
Through raising awareness and creating these discussions, grieving patients, family and friends will be freer to talk about how they feel, and people around them will be empowered to know what to do, say, or just comfortably be there for them.