Planning for the future
Manager Services, Lee-Anne Brenssell presented at the recent NDS Conference in March. Below is a synopsis of the presentation – Planning for the future.
When an individual or their family seeks the support of Identitywa, we commit to assisting them for as long as we are needed, which could be for short periods of time or for the rest of their life.
Making the decision to engage external support can be reassuring for parents, siblings and perhaps other family members or friends. It can also be a particularly emotional and challenging time and therefore requires great sensitivity and compassion to be shown by Identitywa’s staff.
The people seeking to, or already using our services, have varying disability types and medical needs which may have life-limiting implications such as degenerative neurological conditions.
There are also a number of people sharing our homes who are older and are therefore experiencing the health challenges associated with ageing such as the increased prevalence of arthritis, hypertension and heart disease.
An emerging trend in the disability sector is to go even one step further, encouraging discussion with individuals and/or their families about how they want to manage as they move towards the end stages of their life. This Advance Care Planning (ACP) is essentially an ongoing conversation between individuals, families and their health care professionals about values, beliefs, treatment and care options. It has a particular focus on an individual’s wishes for future care and what they want should they no longer be able to communicate their decisions.
It is a process underpinned by the principles of supported decision making, which for Identitywa, is integral to how we deliver supports. Ensuring our staff are knowledgeable about the latest research and are also part of the discussions on this issue in the Disability Service sector is vital.
At the biennial WA National Disability Services Conference held in March, Identitywa’s Clinical Nurse, Kerry Deakin, and myself were invited to present on a pilot study we had been undertaking. We were co-presenting with Research Fellow with the Rural Clinical School of Western Australia, Craig Sinclair, who has also been researching the area of end of life planning. Our study focused on the need to formalise end of life planning for the people we support.
As part of our study, we encouraged people to think about end of life planning, to talk about it, and hopefully make decisions about such things as identifying who they wanted as their dedicated decision maker. Whilst it can be a difficult discussion, it has the potential to reduce stress, anxiety and depression for surviving relatives and friends, and also for our staff who support the individual. Ultimately, this discussion can have a major impact on improving their end of life care.
During his presentation, Craig talked about who needs ACP. He stated that it was important to consider broader social and functional factors such as:
• Is the person expressing concern about his/her current condition or treatment?
• Are there cultural or spiritual factors that might influence the person’s wishes for their future care?
• Is the person experiencing difficulties in self-care?
• Is there a general decline in mobility?
• What is the person’s social context (e.g. do they live alone with minimal supports)?
Moving forward, we aim to fine-tune our processes and continue to work closely with people to ensure their wishes are respected, known and documented. End-of-life planning and talking about death is part of life, we hope that by raising awareness, having discussions and providing information, positive outcomes will be achieved.
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