Molly Carlile AM is a multi-award winning death and grief specialist, palliative care activist, author and is the CEO of Palliative Care South East in Victoria. Read her special column about ‘what matters most?’ to celebrate National Palliative Care Week.

Person centred care, client led care, person driven care, individualised care, consumer directed care………ahhhhhhhh!

Sometimes I feel like we waste so much time and energy arguing over the most politically correct way of ‘explaining’ the concept that we totally miss the ‘doing’ part. It’s not what you call something that matters most, it’s what you “do” about it. Take a chocolate cake for instance. I could choose to call it an ‘umbrella’ if I wanted to. Sure, some people might think me a bit odd, but as long as I ate it eventually and didn’t hold it over my head in a downpour to protect me from the rain, what I call it doesn’t matter.

We all talk about ‘person centred’ or ‘client directed’ care, but how often do we actually ask the person what ‘care’ means for them? How often do we assume that because a client comes from a certain cultural or maybe religious background, they will want to follow the traditional practices of that culture or religion? How often do we then construct a care plan with these practices embedded, without asking the client? How does what we think about a person because of their background and circumstances influence the care we provide? Do we ever test these assumptions by asking the person about the things that are important to them?

I can’t help but think that if we truly provided holistic care, based on the individual priorities of each person, it wouldn’t matter if they came from a different cultural background, a different religious or spiritual perspective, where they lived, what their socio-economic status was, whether they live on the street or in a mansion, they would get the care that best met their unique values and needs. In order to understand what an individual person’s care needs are, we need to allow the person to identify their own priorities. It may well be that there are similarities in the needs of clients related to the type of illness they are living with or their likely illness trajectory, however even though there may be common physical symptoms associate with specific diagnoses, how one individual may want those physical symptoms managed, may be very different to the choices of another person with the same physical symptoms.

Pain is a good example. For some people maximum pain management may be a priority, even if that results in them being drowsy or lethargic. Another person may wish to tolerate a level of pain we think is unacceptable, because their priority is to be alert and able to contribute to conversations with the people they love, or they may feel that a level of pain in some way reminds them that they are still alive or that a level of pain somehow enables them to make reparation for mistakes they’ve made during their lives. We may think this irrational and unnecessary, but by not respecting these individual choices we could well be adding to a person’s level of holistic suffering.

Often clients feel that they have no control over their illness, their circumstances, their symptoms and then along we come and take over their care, making decisions on their behalf and imposing care that we think is appropriate and in the person’s best interest. For the client, this can be the final indignity, having no control over the type of care they receive, by whom and where. If we fall into the trap of micro managing care ‘because we’re the experts’, we can’t say we’re being ‘person centred’, because we’re using interventions that work for the majority, not necessarily what the individual would choose, given the opportunity.

Most of us would argue that the care we provide is based on ‘best practice’, however ‘best practice’ is the result of extensive research undertaken over time, and this of course means it’s retrospective. It also means that ‘best practice’ defines an effective outcome for the majority of people involved in the studies undertaken to reach the conclusion. Don’t get me wrong, research is imperative to improving how we practice, particularly regarding the efficacy of pharmacological interventions and physical symptom management. The issue here is that within the holistic model, there’s multiple influencers on a person’s level of suffering, not least of which are the psycho-social, spiritual and emotional domains, which by their very definitions vary between individuals and may also change for an individual over time.

As health professionals, we too are unique individuals with our own life experiences, biases and beliefs that we bring (often unknowingly) to the therapeutic partnership we create with our clients. Our views about what ‘a good death’ or ‘quality of life’ looks like is defined by our own caring experiences and values, however if we are not constantly reflecting on how we think and feel about these issues, we are liable to fall into the trap of imposing our own values onto clients who may have very different views. If a ‘good death’ to us happens at home, with minimal pain and the client surrounded by loving family, how accepting are we of a client wanting to die in hospital? Do we try to put everything in place to make a home death a reality when the client or the carer don’t feel capable of achieving this? Does this then make the client or carer feel like they’ve failed because they insist on a hospital death OR do they put aside their own wishes because they don’t have the capacity to override arrangements we’ve made on their behalf? Worse still, do they keep their wishes to themselves because they feel they have no control?

Then there’s the ‘elephant in the room’, Voluntary Assisted Dying (VAD). If we are not giving clients the REAL opportunity to identify and achieve their personal priorities and wishes about care now because we don’t realise that our personal values are influencing the care we provide, how will we respond when a client raises the issue of VAD? Do we change the subject or tell them we can relieve their suffering so they don’t need to consider VAD? Do we ignore their queries or on the other hand do we fast track the discussion without considering why they are asking us?

VAD is a contentious issue in palliative care and we all have our own personal and professional views. For me, I consider it no different than a client refusing morphine because they have their own strongly held convictions about enduring pain. The imperative is that we recognise that our personal values and beliefs have the potential to influence the care we provide if we do not consciously and regularly reflect on ‘the stuff that matters’ to us as an individual and on how this can impact on how we provide care. Self awareness, self knowledge and self care provides the foundation for each of us to be able to acknowledge ourselves as unique individuals and having done so, return the focus onto the client we’re working with, acknowledging their rights as a unique individual with their own values and beliefs to make decisions about the care they want to receive and it is our job to both respect their choices and facilitate as best we can, the achievement of their goals.

So, it doesn’t matter what we call it, client driven care means just that. We need to give our clients not just the illusion of choice, but real opportunities to explore their values, goals and aspirations with the knowledge that we will do our very best to accommodate their wishes, even if they are very different to what we think is in their ‘best interest’. I’m not saying this is easy, but if we’re going to say we’re providing ‘client driven’ or ‘person centred’ care, we need to DO it, otherwise we’re imposing a medical model of care based on what we think is best. I don’t know about you, but that’s not the care I’d want.

Molly has written a book: The Death Talker: What we need to know to help us talk about death, which is available for purchase on Amazon here.