Quality of life can be worth more than extending life at all costs

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

The passion of Dr Catherine Calderwood, the Chief Medical Officer (CMO), for an approach to realistic medicine in Scotland sits perfectly with care for people living with a terminal illness and approaching the end of life.

Often, particularly at this time, people might receive treatment and medical interventions that are of little or no benefit, may make them worse, and be in complete contrast to their wishes.

Sometimes the clinician’s mindset is still focused on curative approaches and extending life at all costs and they can lose sight of the quality aspect of life, which for many patients is what they want.

This could include any number of treatments, drugs and diagnostic tests, as well as hospital admissions and stays. It may even lead to a patient receiving CPR at the end of life even if it is of no benefit or against their and their family’s wishes.

How do we resolve this? The CMOs report is a huge step forward and will certainly help raise the importance of getting this right. More training and support for doctors and nurses can always help, but also we need to accept that death is not a failure of medicine and care. It is the inevitable conclusion of life, and thankfully for most people this comes after many, many years of living.

Better communication between patients, families and healthcare teams is essential. When a person becomes terminally ill it is so important to start those conversations and to plan for the future.

At the centre of those plans must be the patient’s wishes for how they want to receive their care, where and what they are hoping for in the time they have left. If these wishes are accurately recorded and healthcare options discussed and explained, this will help those delivering care. Where there are carers, they need to be involved too. It needs to be about genuine partnership.

Recently the Scottish Government updated its national policy and guidance around recording decisions on when someone should receive CPR. This was very welcome, as it states clearly that shared-decision making with the patient is fundamental. It requires that there be good communication between the patient and the medical team, as well as the family and carers about CPR and when it can and should be delivered, and when it should not, or where the patient has expressly asked for it not to be. Once recorded these decisions should be accessible to all those providing care to that person.

When talking to someone who is terminally ill and asking them what they want, they often talk about very personal things that matter to them. They want to make sure that their dog can be walked regularly; they may want to spend as much time in their garden as possible, to visit family and friends, to continue attending a social group or activity.

Helping a person to achieve this can be more important than some of the medical interventions that are offered to them. We often talk about shifting the balance of care from the acute to the community, but really what we are talking about is shifting the balance of care from the healthcare professional to the patient, so they are truly at the centre.

When asked, most doctors would not prescribe themselves treatment at the end of life that they would prescribe their patients.

This is the heart of the issue. If we could move to a position where all healthcare professionals see the care of their patients through the prism of what matters to them rather than what drugs and medications might be used then we can see that shift in care we all want.

The CMO has set out a positive vision and one that can make a big difference to people living with a terminal illness and at the end of life. This can all begin with a simple question:“What matters to you?”

Richard Meade is Marie Curie’s Head of Policy & Public Affairs Scotland, mariecurie.org.uk/change