A duty of care to patients with life threatening illnesses and families

MANY thousands of people in Scotland living with a terminal illness are not receiving the care they need. Palliative care helps with pain and symptom management, as well as emotional and spiritual support so it is not just for patients. Carers benefit, too.

This care can be delivered by specialists in acute settings such as hospitals and hospices and it can be delivered by generalists including district nurses and GPs in the community and in people’s homes.

So, why do people miss out on this vital care? It is estimated that, of the 54,000 people who die each year in Scotland, about 40,000 would need some form of palliative care. Palliative care for those who receive it is of the highest quality and should be praised.

Marie Curie research suggests that nearly 11,000 people are not accessing palliative care (either general or specialist). The Palliative Care Register last year listed only 12,000 people receiving it. Of these people, we know that those with terminal conditions other than terminal cancer – such as dementia, heart failure and chronic obstructive pulmonary disease (COPD) – are far less likely to receive palliative care, yet they would be just as likely to benefit.

There are a number of reasons why this is the case. First, some health and social care professionals are not clear about whom it could benefit and when it should be introduced. For many with terminal cancer, the trajectory of the disease is predictable, which makes it easier for professionals to begin introducing palliative care.

For other terminal conditions, such as heart failure, it is far less predictable. A person may live for weeks, months or even years with the disease, experiencing periods of decline and recovery, but with the possibility of dying at any point.

This can make it much harder for professionals to think about palliative care, yet the patient would likely benefit. Some clinicians also struggle to identify diseases as terminal, for example dementia, which means that their patients are not referred to palliative care. We need to see greater links between palliative care specialists and other disease specialists to foster a greater understanding of palliative care.

In many cases, health and social care professionals simply do not have the experience or training in palliative care they need to support their patients. Palliative care can be given by a wide range of health and social care professionals.

It doesn’t always have to be specialists in palliative care delivering that care. In order to achieve this they need training and support. We also need to see more research carried out into caring for people living with a terminal illness other than cancer, as there is at present far too little research.

There are also things that health and social care professionals can do to help ensure that people have the care that they need. These issues have been explored in the Marie Curie report, Triggers for Palliative Care.

This highlights a number of triggers that could indicate someone might need palliative care: pointers such a patient having more than one disease; problems such as persistent pain, eating problems, and sickness; repeated admissions to hospital, in particular unplanned admissions; or increasingly varied medical interventions to support their care.

Although these on their own or even together may not indicate a need for palliative care, practitioners should consider them. There are also a range of tools and frameworks to help support professionals to identify people in need of palliative care, but these are not widely used but would be of benefit.

We need to make palliative care everyone’s business, from health and social care professionals to family, friends and the general public. Only by doing so can we have the kind of open and honest conversations we need to help people plan and secure the care they need and want.

The Scottish Government has committed to developing a new strategic framework for action on palliative care and Marie Curie fully supports this. This needs to be an ambitious document.

With Scotland’s ageing population growing, and with more and more people living with a number of conditions, we need to ensure that everyone has the care they need; either that or we risk matters becoming much worse in the future.