Surveys and studies continue to show us that people generally fear such issues as loss of autonomy and being a burden at the end-of-life. These matters, rather than pain concern the vast majority of people.
It may be that people do have a good understanding that pain and comfort can be managed these days. The Ballarat Hospice in the Australian state of Victoria provides a great example of such total care.
But there's also the fear of the unknown in the trajectory of a serious illness. This article from the Ballarat Courier really helps paint the picture on total care of the person and their families and, in doing so, removes some of the 'unknown unknowns'.
Ballarat Extra: Knocking on heaven's door
LIZ Dawson can’t imagine doing anything else. As one of two Ballarat Hospice supportive care team counsellors, she helps terminally ill people and their families prepare for their deaths, both emotionally and practically.
“I find it a privilege to go into people’s lives at a time when they are the most vulnerable and be allowed to support them,” Mrs Dawson said.
“I tell people there’s no right or wrong way. It’s your way.”
Mrs Dawson said she was also there for all the family, not just the person who was dying.
“What’s really important in my job is the unseen carers. You’ve got the person who is dying and the immediate person who is seen as the carer.
“But we encapsulate them all - the patient, their family and their friends. If somebody needs to talk, we’re there.”
Ballarat Hospice currently has 117 clients and covers the Ballarat area stretching to Burrumbeet, Clunes, Trentham, Snake Valley, Linton and the western side of Ballan.
“We (the counsellors) are available to all who are supporting the patient and family, but not all will need our emotional or bereavement support.”
Mrs Dawson provides counselling, if needed, and can help with practical matters such as superannuation, Centrelink arrangements, nursing referrals and Advance Care Plans, which was a conversation she said even healthy people should have with their families.
“Talk about how you want to die, who you want to be involved, where you want to die, what you want for your funeral.
“It’s a conversation you only need to have once. If it’s an acute event, your family might not know your wishes.”
With their clients, Mrs Dawson said they often organised family meetings so “everyone is on the same page”.
But, she stressed Ballarat Hospice’ focus is on letting the patient be in control.
“There is an absolute need to respect both the cultural and social aspects of someone’s life.”
However, she said education, particularly for both the client and main carer, often made a lot of difference.
“It empowers people.”
Dr David Brumley splits his time between Ballarat’s two hospitals and Hospice and has seen a lot of change in his 20 years as a palliative care specialist.
“Culturally, the way people are dying is changing,” Dr Brumley said.
He said 80 per cent of his workload was cancer patients, but also said a lot of them were dying younger.
However, non-malignant cases were now also taking up more of his time, such as Parkinson’s Disease or heart conditions.
Dr Brumley sees patients on request from the palliative care nurses and said his role had evolved a long way from mainly pain management.
“A lot of our works involves truth telling and end of life planning. It’s not just about pain.
“We talk about reality and where they are at and help the families make good choices about care.
“Our philosophy is that, if something is important to people, we will mobilise our resources, such as getting people home to die.
“Education is also a huge part of what we do. It is possible to be creative at the end of your life.”
Dr Brumley said he also viewed his role as a type of preventative medicine.
“If people see a loved one dying well at home, it helps alleviate fears over their own death.”
Originally a GP, Dr Brumley became a palliative care physician after hearing an inspiring St John of God Hospital oration by Dr Rosalie Shaw.
Dr Brumley took long-service leave to work with Dr Shaw, one of Australia’s foremost palliative care specialists, in Perth and completed a palliative care masters degree in Adelaide.
Phillip Damon became a palliative care nurse nine years ago after experiencing the AIDS crisis in the 1980s while working as a young nurse in the United States.
“Working with people facing end of life issues was very new to me,” Mr Damon said.
“I didn’t seek it out. It fell in my way.”
Mr Damon said palliative care nurses needed to be quite experienced.
“It’s quite difficult dealing with young people who are dying. You learn to handle things in a different way.”
Mr Damon said Ballarat Hospice handled clients differently to previous hospices he had worked in, with nurses sharing cases rather than each having an individual workload.
“We don’t have ‘our’ patients which is a lot less stressful and it helps them too. With different nurses on call, chances that the client has already met them is quite high.”
He said nurses assessed and monitored a client’s condition, were responsible for medications, looked after the whole family’s well-being and organised respite if needed.
“We resource ideas, liaise strongly with doctors and hospitals and discuss ways to make it work better.
“We recommend equipment to make it easier for them, provide support, monitoring and ongoing management.”
Mr Damon said nurses saw clients either weekly, fortnightly or monthly according to their individual needs.
“Our approach is very different from person to person. Some want it very direct, others don’t want to talk about it.
“You have to have really good life skills. You can’t go in like a hospital assessment and go A,B,C.
“It’s about being flexible and letting them guide how it’s going to go.”
Carer Marg is currently using Ballarat Hospice and attended an initial course they offered.
“My daughter and I went along and found there were a lot more people out there going along the same journey as we were,” Marg said.
“We learnt a lot about our emotional rollercoaster, how everything has changed and nothing will ever be the same again.
“We got lots of handouts, some I read straight away, others I couldn’t face at the time.
“We laughed, we cried, we discovered things we hadn’t even considered.”
Marg said she now looked forward to the weekly nurse visit and said equipment had been delivered to make their life much easier.
“They are available on the phone to us 24/7 which gives me a great sense of comfort that I can ask anything.
“When our situation can change very quickly, they will advise us of what to do next.
“They helped me understand that every situation is different and what works for one may not for another, and however we feel on a certain day is normal for us at the time.”
Delivering the equipment is jack-of-all trades Peter Jones, who is the maintenance man, office cleaner and in charge of medical supplies.
The former furniture delivery man started working for Ballarat Hospice last year after previously volunteering with them for 10 years.
“I love the job. They are good people to work for,” Mr Jones said.
He has also bought order to a previously chaotic supply room, the Drummond Street church at the front of the Hospice offices.
“It used to drive me nuts walking into the church.”
Mr Jones delivers the equipment, including beds, wheelchairs, walkers, mattresses and oxygen concentrators, to clients and will carry out maintenance in homes if required.
“They are always appreciative of my help.”
Volunteers manager Karen Taylor also doubles as the quality risk coordinator.
After her husband was a Hospice patient nine years ago, Mrs Taylor decided her office skills could be put to good use for a good cause.
She now manages 72 volunteers, who are split into four groups: patient support; fundraising arm Friends of Hospice, bereavement social group Special Interest Group Ladies and the 11-member committee of management.
Mrs Taylor said 80 per cent of the volunteers has known or cared for someone who has been on the Hospice program.
“Working with people who are dying is a great privilege,” she said.
However, she said they could also do with more volunteers, particularly with an Op Shop opening soon in the church space.
“It’s an exciting venture. We’re sorting all the stuff out at the moment.”
The volunteers also hold trots nights, charity golf days, entertainment evenings, raffles and barbecues to raise funds.
“It’s wonderful to be out there in the community, offering help.”
She said the volunteer training program was also usually rated a nine out of ten, with volunteers giving feedback it should be a life program teaching communication and empathy skills.
“It’s about how to centre yourself and put your best foot forward.”