Back in 2014 the DHB board was challenged with the view that services being delivered were not patient-centred and action was needed to address this. The DHB’s Consumer Council – consisting of 15 people who are a cross section of our population, each with strong links into our communities – was asked to take this issue up.
All of us around the Consumer Council table held no doubt that being supported and empowered to look after ourselves as much as possible was a whole lot better than just being told what to do or treated with indifference.
We also agreed that good care was beyond just the individual person. For the most part, we live in families or are connected in various ways, and believe a chance for better health is linked to that involvement.
But what did others think and could we come up with a set of values or behaviours that described what good care is?
So we sat around the table with our sister Clinical Council, the body of senior health sector clinicians responsible for providing a clinical view to the board. Within an hour we had come up with a set of agreed values that together added up to person and whānau centred care.
We also agreed that the living of these values within the health sector was highly variable; each of us was able to give our stories of the outstanding and the awful. When we did some subsequent research, we found that our community had been telling us pretty much the same things for at least a generation, so really there is nowhere to hide.
What are these values and behaviours that people are asking for? Here’s a list
Respect what people are telling you. You may not agree, but this is the life they live, their values and their culture.
Find out what matters:
Health sits in the context of broader issues and challenges for that person. They may have many priorities that are ahead of looking after themselves. Many are isolated by poverty, with no or limited support networks.
We are unique:
We may eat mass-produced food but we don’t want mass-produced, conveyor belt care. Use teachable moments; don’t run to a timetable. Together, we can find a place where we are trusted to look after ourselves with your support. Most of us resent being told what to do and that sort of ‘prescription’ doesn’t last.
Take time to care:
Being human, little courtesies like introducing yourself, creating some trust, creating an environment for partnership.
Is more about speaking in the language of patients than expecting them to learn medical language. Otherwise you are talking about me, without me.
Allow people to participate in decisionmaking on their care.
People are often more vulnerable than in normal situations and clinicians need more understanding of that. Be sensitive –reading the body language as well for indications of uncomfortableness or embarrassment which many/most people won’t verbalise.
It’s about whanau:
The whānau/family/caregiver/support person should be part of the team. Be inclusive sooner rather than later. The person often needs support and the ‘family’ is a powerful aid to care.
Communicate successfully by giving clear information and check for understanding. Follow it up in writing. The chances are we are unwell, anxious or off our game. We won’t be taking it all in. That is, in part, why a family/support person is so critical.
Enable us to make informed choices based on provided information.
Care is comprehensive, integrated and continuous. This is a topic in itself! Most of us are staggered at how not-joined-up the health sector is. We waste heaps of time repeating the same thing to different people when they should be able to – but can’t – see the information we have already provided. The way that we receive other services has revolutionised in recent years; healthcare is so ‘last century’ on this subject.
There are 8,760 hours in a year (ok, 8,784 this time because it’s leap year). Unless you have some big health event that lays you up in hospital for a long period, the chances are you have contact with a health professional for only a very small number of those hours each year. So you are not entirely on your own but, frankly, you have more influence over how well you get on than they do. So it makes sense that you should be as well-equipped to manage your situation as you can be.
The consultant who gives you a couple of website links to better understand the diagnosis he has just given you is providing a chance for you to understand what is going on. The consultant who delivers the news in Latin and Greek may be impressing himself but is wasting your time!
I guess a lot of this comes down to being human. When I reflect on the many encounters I’ve had with health professionals for my own ‘issues’ in the last ten years as a high health user, there are standouts at both ends of the care spectrum.
You just know when you meet someone who is ‘in the moment’, focused on you, able to impart their care, understanding and knowledge and empower you to take control. They support your wellness at least as far as you can be well. They are like gold dust.
At the other end of the spectrum you meet some who leave you wondering why they are in a caring profession. Maybe they did care once; it’s time for them to change or exit.
The Consumer and Clinical Councils are working collaboratively to enable a culture of person and whanau-centred care to become the norm across the health sector Hawke’s Bay. We figure that if we can visibly demonstrate partnership it helps this positive ‘infection’ to spread.
The Cleveland Clinic in the U.S. has some quality videos on the subject of empathy. Here are two that are only a few minutes each and well worth a watch.
Empathy: The Human Connection to Patient Care bit.ly/1fpWjYz
Empathy: Patients afraid and vulnerable bit.ly/1EETItV
Graeme is a co-founder, shareholder and director of 3R Group, an awardwinning business with main office in Hastings and operating nationally. Graeme Norton chairs the Hawke’s Bay Health Consumer Council, tasked with bringing consumer voices to all levels of health sector decision-making.