Queensland euthanasia inquiry hears alarming state of palliative care in the state

A group of concerned, experienced palliative medicine physicians has made an important contribution to the current euthanasia inquiry in Queensland.

The Queensland Specialist Palliative Care Services Medical Directors’ Group was formed 12 months ago by a group of experienced palliative care specialists who decided it was time they did something about a state-based, adequately funded, coordinated approach to palliative care in Queensland.

The group, as experienced palliative medicine specialists, is at the ‘coalface of healthcare delivery’ and their contribution arises from many years of experience working in the field.

Giving evidence to the inquiry, the specialist group highlighted a number of important issues for the committee’s consideration.  

Palliative care is not assisted suicide

At the outset, the group articulates a view shared by the overwhelming majority of palliative care medical professionals - that palliative care is not assisted suicide. They state:

“Specialist palliative care services are concerned with ensuring equitable access to comprehensive palliative care for all of those in need. VAD is not part of palliative care practice…”

They go on to elaborate that they consider assisted suicide is a ‘societal’ issue and in contrast, palliative care is a ‘health care service’:

“If you look at studies, people access VAD for various reasons. Very rarely is it for symptom control. That is a really important thing to get across. People do not access VAD overseas for symptom control issues; they access VAD for societal issues… things like fear of the future, loss of independence, loss of dignity, loss of autonomy – the idea of values. People access palliative care for symptom control issues, for complex psychological issues and things around that.”

Little has changed since a 2013 state parliamentary inquiry into palliative care

Disappointingly, they note in their submission to the inquiry that in the six years since the most recent inquiry into palliative care in Queensland, little has changed. “Overall the issues and recommendations from the previous inquiry continue to remain relevant and urgent.” In other words, the group highlights the fact that many of the issues being examined by this current inquiry were raised and examined in detail in the state parliament’s previous palliative care inquiry, and regrettably, have not progressed or seen improvement.

Queensland palliative care staffing well below recommended levels

Palliative Care Australia’s workforce development guidelines recommend a ratio of 2 palliative care specialists per 100,000 of the population. In Queensland, there are 38.4 full time medical specialist positions and the required full time equivalent is 92 positions. In other words, there is a serious shortage of palliative care specialists in the state.

This has an impact on the number of people in Queensland who can access a palliative care physician, especially those living in regional and remote areas. This must be addressed by government before decisions are made about giving people the option to prematurely end their lives, especially if the reason is that they do not have access to adequate palliative care. 

Nursing homes staff do not receive palliative care training:

As the previous Palliative and community care in Queensland: toward person centred care inquiry found, a growing proportion of people with terminal illnesses live in residential aged care facilities (RACF). The inquiry noted:

“The need for more focus on palliative care in RACFs has been recognised nationally and in evidence to the committee. Unmet need for palliative care in RACFs can result in unnecessary transfers to acute hospital care and reducing those transfers would improve end-of-life outcomes for older patients and assist in constraining acute care costs.”

The specialist group elaborates further on the state of nursing homes in Queensland and the lack of palliative care available to residents:

“What happens in a nursing home is you have the care: you do not have the expertise, the knowledge, to go in at short notice or medium notice. Advance care planning is not done particularly well. The nurses have very little support, as I am sure you know. There may be only a non-RN on site after hours. Access to drugs is very poor. The only default they have is to send them to emergency.”

There is still much misinformation about what palliative care is and can provide

The group has highlighted the fact that there is much more education needed in the community about what palliative care is and isn’t, and what assistance is available to provide care to chronically ill and terminally ill patients.

“A lot of work is still required for education, not just for families and carers but even for medical and other professionals, around what palliative care aims to deliver, what we do and what we not do. … Many people are coming out of health training with little to no exposure to palliative care, so they are left to create their own thought on experience, which many not always be accurate.”

“Making informed decisions can only be as powerful as the quality of the information that is given to make that choice. A lot more work is required in the field of education for all health professionals who may encounter people with palliative care needs.”

 This concerned group of medical specialists is to be commended for bringing these issues to the Committee’s attention, and for progressing with their plan to address many of the concerns that have been raised. What they are proposing however will require serious attention and resources from the government. This must occur as a priority. People’s lives are literally depending on it.  Otherwise, faced with no access to pain relief and end of life care, our most vulnerable citizens will literally feel they have no other choice but to take their own lives.

Finally, in the words of the group:

“The people who experience a life-limiting illness potentially are and do become the most vulnerable members of our society.”

We must do better to ensure that our vulnerable citizens are getting the care they need.