What does it take to make palliative care “everybody’s business”?

Palliative care must be embedded into the education and training of all health professionals across their careers, says Dr Yvonne Luxford, the CEO of Palliative Care Australia.

This is necessary to help turn around the widespread view within the health system that death is a failure, and to support wider access to palliative care, she says.

“We need to promote understanding that palliative care is another valuable tool in the box for providing the best care for a patient. It is not giving up, it’s about quality care,” says Dr Luxford.

In the online Q and A with Jennifer Doggett below, on the eve of the 12th Australian Palliative Care Conference, Dr Luxford also stresses the need to improve access to palliative care in aged care services, and examines some of the cultural issues around death and dying, particularly for Aboriginal and Torres Strait Islander people.

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Q: Why is palliative care ‘everybody’s business’?   You must hear so many stories; is there one you’d like to share which brought this message home to you personally?

At a very simple level, death is one of the only things that unites absolutely everyone on this planet and yet, is one of the topics we are most reticent to talk about. We will all experience death and therefore we should all have an interest in making sure we have a health system which has palliative care at its heart and enables us all to live well until we die, and ensures our final days are pain free, dignified and reflect our personal choices and wishes.

It is everybody’s business whether you are young or old, a health or aged care professional providing care, or a politician developing policy. It’s not just for people with cancer, people who are old, or professionals working in specialist services. It really is an issue for us all.

I recently travelled to Bunbury in Western Australia to speak at a palliative care forum organised by Nola Marino MP who co-chairs the Parliamentary Friends End of Life Care Group. A woman stood up in the forum to contribute a comment and I was struck by the fact that she seemed to radiate peace and wellbeing.

That was my first impression of Kaye Sales, and I was lucky to also chat with her husband Geoff. Kaye had been diagnosed with terminal peritoneal mesothelioma and told me about the wonderful support she was receiving from the local palliative care team and the difference they had made to her, and her family’s, quality of life. Hearing her story was so moving, and really brought home to me why it is important for us to continue our work to advocate for a better system of palliative and end of life care in this country.

Kaye graciously accepted our invitation to share her story on video, so I encourage you to watch Kaye’s Story and hear first hand about the benefits of palliative care and why we should make it everyone’s business.

[youtube]http://www.youtube.com/watch?v=cWHPZzaeFzE&feature=youtu.be[/youtube]

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Q: What are the main barriers at a workforce, service and health system level to making palliative care everybody’s business?

We have a health system that sees death as a failure. If this is the foundation of everything in your education and workplace culture, how incredibly difficult must it be for clinicians to accept death, and utilise palliative care to ensure that people have the best possible quality of life until the end. We need to promote understanding that palliative care is another valuable tool in the box for providing the best care for a patient. It is not giving up, it’s about quality care.

The strong focus on the acute system is at odds with what Australians tell us they want. We know that about 70% of people would prefer to die at home, yet only about 20% do at the moment – the majority die in hospital. We really need to shift the focus of caring for the dying to the community and keeping them out of hospital. We can’t achieve this without providing support to people in their homes and aged care facilities.

Another question at the system level is what Activity Based Funding will mean for palliative care. How will we account for care delivered by the palliative care team as a consultation to the patient dying with renal disease? They remain under the care of the renal team and that activity is costed, but if the activity of the palliative care team is not accounted for in some manner could they become an unfunded overlay – rather unattractive to any hospital finance department, despite the quality of care delivered.

We need to increase the specialist palliative care workforce so that they have the capacity to deliver care in the community to those with complex needs, and we need to significantly improve the education of all health professionals to ensure that generalist palliative care is delivered with safety, quality and compassion. How can we expect our health professionals to provide high quality palliative care when it is simply not part of their training? We need to make care of the dying a standard education provision for all health professionals across their career span so they all understand that it is their business.

But it’s not just about education – appropriate funding mechanisms are also lacking. Few GPs make home visits any more not because they enjoy sitting in their surgery, but because our funding model does not cover their costs for home visits in many cases, and especially in rural areas where distances may be great.

We also need to support primary care providers to encourage advance care planning. If people have expressed their wishes for end of life and this is known by their family, carers and treating health professionals, it’s much easier to be able to plan and provide care according to their wishes and avoid crisis situations which often end up with a trip to the ED. So we need to reorient the focus of our health system, and also take responsibility at a community level for what we want at the end of life.

At a service level there are many excellent specialist palliative care services out there, the problem is they are few and far between and access is a bit of a lottery, based on where you live, and the state based funding levels. We also have a lot of work to do to improve palliative care in aged care. The Productivity Commission said that palliative care should be ‘core business’ for aged care, and yet we’re not currently meeting the needs of many of the 50,000 residents that die in these facilities each year.

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Q: What do we know about the level of access to palliative care in Australia? What proportion of people who might benefit from palliative care actually receive it?

The latest international research tells us that about 70% of all people who die would benefit from access to palliative care services.

In Australia, we have very limited data about the number of people who have access to palliative care. The AIHW collects data about the number of inpatient palliative care episodes, but this does not differentiate between people who receive care once or multiple times. Nor does it account for the people receiving palliative care in the community.

In 2011 nearly 147,000 Australians died, using the international research approximately  107,000 would have benefitted from access to palliative care services, however our best estimates show that only one third to one half did. At the very best this leaves 50,000 Australians and their families without adequate support at the end of life.

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Q: What do we know about the quality of palliative care in Australia? What are some of the major concerns around safety and quality?

The National Standards Assessment Program administered by Palliative Care Australia encourages continuous quality improvement in specialist palliative care services. The Program provides a framework for services to assess their service provision against the Standards for Providing Quality Care for all Australians and then develop strategies for improving the quality of the care they deliver. Despite being a voluntary Program, 97% of services actively participate.

The Standards are embraced by all specialist palliative care services and are included in State and Territory palliative care strategies. Palliative Care Australia is currently undertaking a review of the Standards to ensure they remain relevant and reflect contemporary palliative care practice.

Other programs funded by the Commonwealth also support quality improvement such as the Palliative Care Outcomes Collaborative which uses standardised validated clinical assessment tools to benchmark and assist services in meeting the Standards; Caresearch which is a national palliative care knowledge network providing palliative care information, evidence and resources; and the Palliative Care Clinical Studies Collaborative which is a multicentre research centre conducting clinical studies in palliative care.

So clearly we have a lot of programs supporting specialist palliative care to maintain and improve their quality. But what about the care delivered both in the community and hospital settings that purports to be palliative care, but is a long way from modern practice in both safety and quality? We have all heard the horror stories, where pain and symptom relief is minimal, where death may be intentionally hastened, where cognition is unnecessarily deadened thus losing those final opportunities to communicate with loved ones.

The only way to address these misunderstandings and safety and quality issues is to ensure that palliative care is supported to be the integral part of our health system that it should be, and to insist upon compulsory education of health professionals in palliative care across the span of their career.

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Q: What are the challenges involved with increasing consumer engagement in palliative care?

Let’s face it: death isn’t a very sexy subject, certainly not your run of the mill dinner party conversation (unless of course you work at Palliative Care Australia!) We have some work to do to get people to engage with these types of conversations, to break the taboos and let people know it is ok to talk about.

I’m reminded of a quote I heard a few weeks back from Jon Underwood who said “Just as talking about sex won’t make you pregnant, talking about death won’t make you dead.”

People tend to think it’s not something they need to think about until they actually get there, and we really need to get people to realise that it’s never too early to talk about dying, as you never know when the time will come. The earlier we talk about it, the more we plan, the easier it will be when we get there.

We’re so detached from the process of dying in this country that we just don’t have the exposure to feel comfortable with it. Whereas people used to die at home in the care of their family, nowadays the majority of people die in hospital, it’s become a medical event. We need to reclaim death in the community.

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Q: What are some of the cultural issues around palliative care – could you please give some examples of how peoples’ needs and preferences might vary?

Palliative care is about providing care based on the individual’s needs and preferences. Different cultures have different ideas about death and dying, different belief systems and certain rituals.

Remember that palliative care is a holistic approach to care – not only does it meet the person’s physical needs, but their emotional, cultural and spiritual needs too, as well as those of their family and carers.

Cultural issues encompass religious beliefs which can bring very different belief systems and different needs of pastoral care. Dying can rekindle past beliefs that may have been forsaken which can be a surprise for family members.

Some cultures choose to observe a vigil and it is important for the person’s carer to not leave their side during the dying process. In others, it is important that children visit the dying person to share laughter and joy, and to share the wisdom of the elder. For Aboriginal people, return to Country may be important for them. In some Asian cultures, it is important that the adult children make the decisions and that the person not be told that they are dying.

There are many different cultural needs and preferences around end of life, and it is certainly a challenge for our current system to ensure we are providing care which respects these needs.

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Q: How can the needs of Aboriginal and Torres Strait Islander Australians be better met when it comes to palliative care? What do we know about their access to appropriate care?

Aboriginal peoples and Torres Strait Islanders use health services infrequently, and palliative care services rarely. There are a number of things we need to do in order to improve this level of access.

We need to develop policies that support return to Country.

We need to train more Indigenous health workers in palliative care and improve community engagement and ownership of locally developed strategies to improve end of life care in Indigenous communities.

We also need to make sure that non-Indigenous health professionals have cultural safety training so that they can better support their Indigenous patients and respect their needs. In some cases this can be as simple as ensuring that the venue for a family meeting to discuss the care of the dying person is large enough to accommodate a broader network of loved ones, rather than a small nuclear family. The primary carer and decision maker may also not be the spouse or child, and assumptions should not be made.

We need to offer and provide more culturally appropriate care regarding grief and bereavement, supporting communities as well as direct family. Restrictions on speaking the name of the deceased for some peoples, and publication of photos, should also be understood and respected.

In essence, we need to ensure that the delivery of all palliative care is respectful and supportive of all people’s spirituality and culture.

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Q: If you could convince politicians to commit to one policy or funding measure at the election, what would this be? 

PCA has outlined a number of priority areas in our Federal Election Platform: Make palliative care your business that we want all political parties and candidates standing for election to commit to.

If I had to choose just one (this is really hard) I would highlight the need for development of a National Palliative Care Workforce Strategy which embeds palliative care into the education and training of all health professionals across their careers.

The Workforce Strategy itself is important to determine a mechanism to ensure that we have both the specialist and generalist palliative care workforce to meet the needs for care of Australians as they die – no matter where they are located, no matter what their diagnosis, and no matter where they choose to live until the end.

This will mean not only increasing the specialist workforce (note that in palliative care specialists include a variety of disciplines, not just doctors), but also significantly expanding the education of all health professionals so that they can confidently deliver evidence based current care. IN other words – to ensure that we all receive the best possible care at the end of our lives.

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Q: How can people working within the health sector help to raise the profile of palliative care?

It’s important to remember that our health professionals are also members of our community, and as much as we promote the importance of our communities learning more about palliative care and having conversations with their families, we shouldn’t take for granted that health professionals are good at doing this for themselves.

I would also encourage health professionals to make sure they have made their end of life wishes clear and have had conversations about end of life with their loved ones; this will make it easier to have conversations with their patients. Seek out some professional development in palliative care and, most of all, don’t be afraid to refer people to palliative care! It is about improving someone’s quality of life – it is not about giving up, but about continuing to provide the best possible care.

It would also be valuable if health professionals encouraged everyone to engage in advance care planning and share their wishes with their loved ones. These are conversations we can start when we are fit and healthy, and revisit as our circumstances change.

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Q: What is the single most important thing you’d like to ask Croakey readers?

I’d like to ask you to take action today to make palliative care your business. This could be anything from sharing this article with one other person, seeking some information about palliative care, taking a look at Palliative Care Australia’s website and social media accounts.

But the number one action would be for you to go home, sit down with your loved ones, and have a conversation about death, dying and what you want for the end of your life.

Remember – talking about death doesn’t make it happen, but it could help ensure that your values and wishes are respected and that you and your loved ones receive better care when the time comes.

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You can follow Croakey’s coverage of the conference here.

• A long and dreamy read about “letting go into death”
• Jean Kittson on laughing, dying and the importance of palliative care