Person-centred care in Scotland 2 - Palliative care

Talking about dying - credit Social innovation Camp

<- Read the first part of this series, on the Chief Medical Officer's 'Realistic Medicine' and what shared decision making might look like

When it comes to putting the person in the centre of their care with shared decision making, are there lessons to be had from palliative care, which specialises in managing the end of someone’s life from terminal diagnosis to death?

The Chief Medical Officer Dr Catherine Calderwood thinks palliative discussions can reveal the “disconnect” between what a person wants towards the end of their life and what a clinician sometimes assumes the person wants.

James Cant, director for Scotland for the British Heart Foundation and former director at the British Lung Foundation, recalls one example.

“When most people hear ‘palliative’ they hear end of life. In reality it’s a far longer and more subtle spectrum than that,” he tells Holyrood.

“I once had a brilliant South African GP, and he said when someone was diagnosed with COPD, for example, he would sit them down and he would explain the diagnosis and his next question was we’re going to sit down and we’re going to work out how we go down this path together.

“That is a transformational statement for a healthcare professional to make. It’s a hugely empowering statement for any patient to hear.”

End-of-life care charity Marie Curie is “hugely supportive” of the CMO’s realistic medicine ethos, says its head of policy and public affairs in Scotland, Richard Meade. 

“There is never a more important time to get someone’s care needs right than when they are at the end of life – as you only get one chance,” he tells Holyrood.

“Ensuring that care and support is built around the needs of the patient and their wishes is absolutely vital to that. It’s about what matters to them. It is shared decision-making.”

Palliative care shows that sometimes in discussions about care a person might choose not to have an intervention. This was highlighted recently in the new revised palliative care guidelines on resuscitation, which state patients should always be involved in the decision about whether to attempt to resuscitate them when their heart or breathing stops, unless they lack capacity to engage with the conversation.

The changes to the national policy on DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) followed reviews by doctors and nursing unions as well as guidance from the General Medical Council.

Attempting to use CPR when it will not help someone can cause pain and distress for family members, it said.

Mental health minister, Maureen Watt, said: “Supporting staff in all health and social care settings to have these sensitive discussions is of the utmost importance.”
But for this to actually happen, those conversations need to be happening earlier.

A report for the Scottish Parliament’s Health and Sport Committee last year revealed that in many cases, palliative conversations were not taking place until it was too late.

Professor David Clark of the University of Glasgow estimated 10,600 people in Scotland die each year without receiving any care designed to make the end of their life more comfortable.

According to a submission to the committee’s inquiry by palliative specialist Professor Scott Murray, there can be issues when people are reluctant to talk about death.

“The challenge here is that to document palliative care means that general practitioners have to discuss what palliative care is with patients which will of course bring up the subject that they have terminal illness,” he said.

“This can be difficult and if patients suggest they do not want to talk about this, then the palliative care cannot be recorded in the record.”

The use of the term ‘anticipatory care’ might help, suggested Murray.

For Meade, the key to shifting the conversation lies in changing the clinician’s mindset.

“This is also where realistic medicine comes into it. Often, particularly at the end of life, people might receive treatment and medical interventions that are of little or no benefit, may make the patient worse and be in complete contrast to what they actually want.”

This is why the new guidance on CPR is so important, he suggests. However, conversations about quality of life need not wait until the last moments.

“Sometimes the clinician’s mind-set is still very much focused on curative approaches and extending life, and they can lose sight of the quality aspect of life, which for many patients is what they want and is most important to them.”

One area with a long history of palliative care discussions is cancer, which has been long recognised as a terminal condition. Clinicians dealing with cancer are well practised at recognising how long someone will live. For other diseases which are becoming longer-term conditions, there is less experience.

The cardiovascular community looks with “admiration and some envy at the extent and quality of palliative care services available to cancer patients,” according to James Cant.

Historically, Marie Curie focused on cancer care too, although it has campaigned in recent years on the unmet palliative need among other diseases and those with multiple conditions.

Meade says: “We know that people with terminal cancer have significantly more access to palliative care than somebody with dementia, motor neuron disease, multiple sclerosis, heart failure or COPD. That is obviously something that needs to change.”

This change, again, comes down to the conversations, he suggests.

“Palliative care can sometimes run alongside other interventions that are still happening, as long as there’s a conversation with the patient about what actually matters to them,” he says.
“At the point of a terminal diagnosis, at the very least the starting point of the conversation has to be about what’s important to them, talking through what they might want in the time they have left.

“Often the last thing they’ll say is they want access to this drug or that drug. They’ll say, I want to be at home and I want to have my family with me. I want to make sure someone is walking my dog, or to make sure my garden is kept in good condition. These are the important things that matter.

“If these wishes are accurately recorded and healthcare options discussed and explained then this will help those delivering care too. Where there are carers, they need to be involved as well. It needs to be about genuine partnership.”

Early proposals for the new GP contract suggest the clinical responsibility for palliative care in the future could be shared among the primary care team. But what will that team look like?

Read part 3, on how the primary care team might adapt to the needs of the person ->