Fulfilling A Promise: Why we need to talk about whether we are actually delivering on patient centred care

Warning – This is a long one and I’m not even a little bit sorry as I think we need to talk about this

Lets get this bit but out of the way first. I don’t believe that any of us for one second mean to provide anything less than the best care we are empowered to give. I do however believe that there are a couple of key components that may mean that we don’t always provide the care we aspire to. In my head there are three key reasons behind this:

  • Empowered to give is the key phrase here. Are we supported in delivering the best care? Do we have the right staff, equipment, training etc?
  • Does the organisational culture support delivery of patient centred care, in terms of high level decision making, expectation setting and provision to challenge?
  • Are we as individuals aware of the behavioural patterns we fall into during times of stress i.e. if we trained during a hierarchical medical era is this where we shift to in our practice in times of psychological challenge, such as a pandemic?

This post isn’t a criticism of individuals or centres, but it is a challenge to ensure we are thinking and questioning as part of our everyday practice. An encouragement to question whether we are providing the best in patient care, or at least actively identifying areas where the system has fallen down. We can only improve if we question, question ourselves, the situation and the system.

So why am I posting this now?

I’ve had more to do with being on the other side of healthcare than I’d like over the last three weeks. The outcome was pretty dire and I made a promise to the amazing person who was the patient that I would use whatever influence I have to remind people that we get the principles of person centred care wrong it is the patient that suffers. In my case it meant that the patient suffered loss of dignity and the final weeks of their life without the support of family and friends.

I work in paediatrics and I must admit I had fallen into the trap myself of thinking that every world was like my world, not that I’m claiming my world is perfect. Paediatrics is however more family focussed by it’s very nature as we need families to support us in providing care. We also need to listen differently as many of our patients can’t articulate their clinical condition and so the input of non verbals and families into their care is especially important. My sojourn in the world of adult healthcare was therefore a considerable shock to my system and has left me both reeling and questioning my own practice.

Impacts on dignity and right to choose

The NHS Constitution clearly sets out key principles that we should be using in all of out interactions, with each other and with our patients. These include clear statements on respect and dignity. For us really to fulfil this pledge though we need to hear what patients are saying to us.

For example, if as part of a patients’ care they are experiencing loose stools and they are not supported to access the bathroom, and instead left lying in a contaminated bed, they will not only be at increased risk of infection (from the femoral line they have in), but they are also likely to become less compliant with their care in general. Are we under these circumstances really demonstrating through our actions that we care for the patient in front of us?

As healthcare professionals we are often a bit non-plussed about faecal contamination, for those not in our world however we need to remember that to many individuals this is a humiliating event. If we compound scenarios like this with not explaining why medically we are making it worse by adding in medication, such as laxatives, which make the situation more likely to reoccur, then are we really thinking about how we are impacting on patients psychological health, or undertaking holistic healthcare?

Is this really seeing patients as equal participants in their care choices if we aren’t giving them the information to inform those judgements?

Too often we make decisions based on our knowledge and do not engage with the patients and families in front of us in order to support their engagement with their own care. How often do we ask them what matters to them? Only by asking this question can we establish what dignity and the right to choose really means for the patient impacted.

Importance of communication assumptions about levels of understanding

Communication is especially important right now. Due to the pandemic patients are frequently isolated from support mechanisms. This lack of support may mean they don’t challenge their care, it also means if that challenge is unheard that they don’t necessarily have access to escalation procedures, or even worse access to sign posting about what to do next. They are effectively in a very lonely bubble, with the only people to support them a bunch of strangers who may or may not have the time to develop connections or truly support.

When I was finally allowed to visit the healthcare centre (a story for the next section) not a single person, apart from the palliative care team, introduced themselves until the last day when to be honest it all felt too late. Not one ‘hello my name is’, not one explanation to the person before them or us their family as to why they were there and what they were doing. Because of my job I felt like I could explain things and to ask the questions that needed asking, but most people do not have a healthcare professional as part of their family. This was apparently the way the whole episode of care had occurred. I thought we had come so far in terms of not just seeing patients as anatomy and conditions, but this just showed me how wrong I was. On the day of his death everyone was brilliant, supportive and demonstrated amazing communication skills (apart from the medics who didn’t even come in) but the impact of those skills would have been so much greater if used when someone was able to respond and participate.

The Palliative Care and Support team came to visit on the day before he died. They said ‘hello my name is’, they didn’t however explain what palliative care was or even really check my family knew what the reality of that visit meant. When I spoke to my family after they had gone they were shocked when I explained. We have to remember that not everyone lives in a world where those words have meaning, we need to stop hiding between titles as barriers and truly check that what we believe has been heard is actually what was received. The other extreme is the ‘infantilising nature of healthcare’ where we assume that people don’t have the knowledge and capacity to be involved in their care or decision making. It takes time to get a feel for the level of a patients engagement/understanding and pitch your content appropriately. Some patients have a considerable amount of knowledge about their own condition, but whatever their level of knowledge we should be talking to people at the level that is appropriate for them, not what is appropriate for us.

Long and short is that I’m saying how we communicate matters, not just what we communicate, and that we should all spend time (me included) reflecting on how we do this in practice. I’m as guilty as anyone for rushing in, delivering the information in my head and then rushing onto the next task, but is that what is actually needed of me? Take the time to get patients names right, learn who they are not just the reason for admission, and make sure we communicate in a way that works for them.

See the source image

Who are we making COVID-19 decisions for?

The hospital in which all this occurred has banned all visiting because of COVID-19. Not only that, they had removed all entertainment centres, and thus a big means of distraction, for all patients. This may seem really trivial, what does it matter if someone can’t watch TV. It matters because England got to the European final and football, as trivial as it may seem, is super significant in some peoples identities. Dying without being able to engage in one of the few seminal moments you are still able to experience is significant. It matters because if you have unexpectedly found out you have only weeks to live and you have no visitation to provide support then distraction is probably one of the few things that may aid you processing that information.

The same hospital that banned visiting had less than 20% of the staff on the ward wearing masks. If a patient is in a cubicle I can see no barrier to visitation from an IPC perspective, just get them to wear a mask. If we are insisting on banning visitation in order to prevent in-patient acquisition then staff need to be also protecting their patients. If staff are not wearing masks and protecting their patients then I question what is the point in banning visitation? Who are we protecting? What is the purpose of this policy that leaves someone at the worst time of their lives alone without support?

Visitation was allowed during end of life care. Sadly end of life care wasn’t from the moment they said you were going to face a life limiting condition, it was for the hours/days where death could be imminent. Sadly it is during these times when the patient themselves becomes less cognisant of their surroundings. It is beyond the time when you can have conversations about wills, final wishes, funeral arrangements. It is passed the time you can have most impact in terms of psychological support. Visitation also involved battling every day at reception for the password to be permitted to visit. Battling because no one had ever put the name in the book that allowed them to issue it. Delaying by 15 to 30 minutes when you would get to the ward. Extending a period of incredible stress as you wouldn’t know what you might find. All because no one had filled in a form. I of all people understand how busy everyone is and that it seems like a minor thing, but I can tell you as the person who uncharacteristically could have screamed at a stranger in those moments, a minor thing for us can have significant consequences for others.

So after this outpouring which I’m hoping will make us all think, what do I believe that we should be doing differently, myself included:

  • Make every conversation and encounter matter. Think about what you are delivering and how it has been received, has it been understood? Have we really listened to the response rather than just delivered information?
  • Even during a pandemic patients are more than their conditions. Against their will they are living in our world. A world that they don’t necessarily understand the rules or the language of. We are their translators, a key role that we need to understand we fulfil. Simple things like explaining our roles can make all the difference.
  • Challenge where needed systems and processes that don’t feel like they are supporting patient centred care. Sometimes the people making the rule/policy will not understand the true impact of it unless they get the feedback about it’s impact. We all need to be part of the change.
  • Take the time. Understand how you react to stress and how that response impacts on your practice. It’s hard to reflect on our practice right now but it’s rarely been needed more.

All opinion on this blog are my own

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