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Is there such a thing as Person Centred Care?

Molly Carlile AM

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

 


Comments

  • Such a good honest read, THANKYOU Molly I can relate wholeheartedly to your views.

    - Karen Downie
  • Ah Molly, as always your direct talk leaves no one wondering.."I wonder what she means. " thanks for a great, honest and relevant article. You have raised many important considerations. Especially "do they keep their wishes to themselves because they feel they have no control "

    - Annie Whitlocke
  • Hi Molly love your article. It's 2 years since I retired from Pall Care nursing in the hospital setting. It frustrated me no end - when trying to get patients home for EOL or just for a short time. Too many opinions, rules and regs, best practice etc... So much precious time was wasted - usually to the detriment of the patient's needs and wishes. Same for visiting pets - must be recently washed, well behaved, vaccinated ....blah,blah, blah!?! Patient not allowed fluids, difficulty swallowing - therefore not allowed the one thing they crave so dearly - a cup of tea! Not allowed to die happy - not on our watch!! I trained in the '70's, when hospitals were basically run by doctors and nurses. Things have changed so much with time and progress and University degrees. Unfortunately, in my opinion, not always for the better (esp. re pall care). Two years away and you're pondering this question - so, things haven't changed??

    - Dianne Wilcox
  • Hi Molly, I have read your article and I agree with your views. I have stopped writing and editing my comments as I seem to go on and on about this. I feel passionate about providing good care for all. Is there such a thing as person centred care ? I personally think there is not. I have been working in personal care for eight years and I am a student E.N., I believe we all need to be educated about caring for someone, from professionals to families and friends, including government departments.

    - Sharon
  • I’ve always thought as a nurse working in a major hospital that we did palliative care, death & dying poorly. Mind you I do think we are improving but we’ve got a lot of improvement ahead. Recently I lost my wonderful husband if 43 years. I tried my hardest to nurse him at home however the time came where he (we) made the choice to go to a hospice. We talk about person centred care....I saw it at its greatest. Each person was individualised to his/her needs. The staff including doctors were absolutely remarkable. I stayed with my hubby 24 hours a day & the staff allowed me to care for my hubby as he wanted which gave us some valuable intimate time together. They also guided me when the time came to let them take over care which sort of gave me permission to step back & let them do their care for him. They sang & serenaded him which my hubby just loved. Memories I hold with joy. At the end their care, support & sincerity was so valuable, soothing & professional. Mercy Hospice Newcastle provide holistic care and I’m truly appreciative.

    - Karen Mitchell
  • I loved your comments on person centred care as it highlights that people are not really asked what they want with their care. I ensure that the question is asked on a daily basis.

    - Karen Burchell
  • I do believe we can do it. I think we have moved forwards in best practice but we need to take the time to talk to the patients, and maybe their family. We are rushed. We have reports to write and data to enter. This time has taken us away from the ‘art of caring’. We need to spend time upfront with the patients, understand they are vulnerable and need time to understand. Health literacy, computer literacy and simply literacy are all impediments but even the most health literate patients are vulnerable. They need time. To consider the whole of person implications of care. The impacts on their families, friends, pets, and their own lives. Time to talk, time to consider and ask questions. This is how we provide person-centered care. But who pays?

    - Anne
  • Thank you Molly for bringing us back to basics and recognising the impact that our self awareness, both as individuals and as organisations has on those we care for. Responding to answers to 'what is important to you at this time?' can be challenging in a rules-based environment unless the individual is empowered to act on those wishes.

    - Sally
  • Thanks so much for this candid, challenging and thought provoking piece Molly. It reminded me immediately of a presentation I heard from Margaret Morhman, an ethicist in the US. She said “no matter how much we learn, how deeply we can track the origins and expressions of genetic human biology and its disorders, we are still left at the end of the day with the non-generic patient in front of us.” This applies to the ‘non-generic’ health carer too! Self-awareness and self-knowledge essential as in the end we have unique human relationships in every encounter.

    - Cheryl Holmes
  • Care is unconditional love as the person leaves this earth spending time, opening blinds allowing the day to shine through, using their favorite music, essential oil to allow them to pass to the other side. What they ask for should be provided, not just follow the palliative care pathway, important to most is not to pass alone. We set done to many guidelines without asking how would you prefer to leave this earth.

    - Marylouise Sheedy

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