Tips for breaking down barriers to palliative care

Key points

• People with disability can experience barriers to accessing palliative care
• There are a few ways to break down these barriers and make sure you receive the best care possible
• Part of the issue is knowing which system should be providing your support

The specialised care helps you live as fully and comfortably as possible and can include support for managing pain, personal care, social, emotional, psychological or spiritual support, counselling and grief support, and referrals to respite care services.

It is best started as early as possible to achieve all the benefits, but according to the Australian Department of Health’s report Exploratory Analysis of Barriers to Palliative Care, people with disability might find barriers to accessing the palliative care they need.

There may be physical barriers to accessing palliative care, such as some buildings not having wide enough doorways or enough accessible parking, however the report says the main barriers are not physical.

Communication barriers

Open and transparent communication is vital in palliative care for your services to be the best they can be.

There is not a one size fits all approach, so everyone involved needs to understand you, how you are feeling and what you need. This includes:

• Health professionals
• Nurses
• Healthcare workers
• Support workers
• Family members and carers

They also need to understand each other, for example, a support worker needs to be able to understand instructions from a health professional if they are providing part of your palliative care.

This means health workers might need training in disability support or communicating with you and your support workers might need training in health-related support. For both of these funding is most likely available through the National Disability Insurance Scheme (NDIS).

The health system is also often under pressure and staff may not feel they have enough time to stop and listen to you properly.

To check you are understood you can ask health workers and health professionals to repeat back to you what they think you have said, and what they think you need.

Care can’t be person-centred if health services don’t take the time to understand the person they are working with and communicate properly with them.

In some cases, health professionals might find it hard to determine if what you are experiencing is because of your disability or because of an illness. If they aren’t able to diagnose your illness easily it can prevent you from accessing palliative care as early as possible.

You understand your own body, support needs and feelings the best, so it’s important professionals speak directly to you and communicate with you to get the full picture – and not just speak to your support network.

Assumptions from anyone supporting you can be a barrier to good quality palliative care, but working together and communicating well will overcome this barrier.

Systemic barriers

The health system and disability support system, through the NDIS, are each responsible for different parts of your care and this can cause confusion.

Confusion between those supporting you makes it more complicated to ensure you are getting all the support you need and that your palliative care is effective.

In theory, the health system should provide diagnosis and treatment of conditions, as well as rehabilitation after treatment, while the NDIS should provide support for you to build your skills and independence – regardless of your reason for accessing palliative care.

To make the most of your support through both systems, planning and coordination are important.

The NDIS often doesn’t respond quickly to changing health needs, so you will have to do some paperwork to get a new plan that reflects your palliative care. Consider ways you can get support coordination in your plan and strengthen your support team from both health and disability systems.

The casualised support workforce can also cause less continuity of care, so investigate if you can have a regular roster of the same support workers with experience.

If your support workers are not qualified to help you with some of the medications involved in palliative care then accessing community nurses might be part of your planning.

The other major systemic barrier you may come across is whether the specialist services you need are available in your area.

If you live in a city you will likely have services you can access, however if you live in a rural or remote area this may be more difficult. Look into what services can be delivered via telehealth and your options for support workers or local health care workers to do professional development training through NDIS or hospital funding.

Advocacy

Due to these and any other barriers you might come across, as well as the fact that you may be dealing with illness or pain, having a trusted person present is a good idea.

An advocate or support person can help to ensure you are involved in all decisions about your care and can provide supported decision making if you need it.

They will also be a form of emotional support and a shoulder to lean on during a tough time of your life.

An advocate can be a family member, a close friend, a neighbour you trust or a formal advocate, found through the Government’s Disability Advocacy Finder.

It may be challenging to access palliative care in the first place, depending on the health workers you come across and their views of whether you need this specialised care.

But knowing how to overcome barriers and having support to work through these barriers is an important first step to getting quality palliative care.

What other systemic barriers have you experienced and how have you overcome them? Tell us in the comments below.

Related content:
How can palliative care be more accessible for people with intellectual disability?
Taking care of your mental health when living with a disability
Why is supported decision making important?