How to look after someone with a terminal illness

April 30, 2018 by Miriam Johnson And David Currow, The Conversation
Caring for a friend or family member can be highly challenging. Credit: Shutterstock

Dying is changing. It used to be quick and unexpected for most, due to infection or trauma. Now it comes to us, in general, when we are older – caused by chronic medical conditions such as heart, kidney or lung disease, diabetes or dementia.

The is that we are living longer. The bad news is that many more of us will live long enough to die from complicated health conditions – which often need care over many months or even years.

It's predicted an extra 100,000 people will die each year by 2040. So the stark reality is that most of us will either provide care or need it, in the approach to death. And most of us will look to our nearest and dearest – our family – to give us that .

Caring for the dying

While helping someone during a terminal illness can be rewarding, there are costs – work pressures or losing employment altogether, financial losses, worsening health and social isolation. Family carers do not by and large volunteer, nor are they trained. They just find themselves with someone who needs care and they step up to the mark. Few get the support needed – at the time, or afterwards.

Researchers at the Wolfson Palliative Care Research Centre included questions in the Household Survey for England about caring at the end of life. The findings show that one in four had had someone close to them die in the previous five years. Of these, one in three had provided . Australian figures are similar.

A dying shame

It's clear though from this study, that caring for someone close to you can take its toll – one in ten carers said they would not provide such care again under the same circumstances.

These people were more likely to be older, and where the person had died did not have access to palliative care services. Patients without such support are also more likely to die in hospital and less likely to die at home.

As it is highly likely many of us will be called upon to support a family member or friend at the end of their lives – and may need to give this help more than once – and society together can't afford for this experience to be so bad that wouldn't want to do it again.

Ending life well

Research has shown that carers are more likely to be willing to provide care again if they are supported by palliative care services. Research has shown that the support provided by such care can mean the difference between coping and not coping for family and friends.

Despite what many think, palliative care services are not just for people with immediate painful death sentences due to cancer. They are there for anyone with a progressive illness, providing an important layer of care alongside usual treatment to help patients live as well as they can. These services may be needed off and on for months or even years – not just during the last few days of life.

The UK has one of the world's most developed palliative care services, yet many people still miss out. Older people, people in socioeconomically disadvantaged areas, and those with diseases other than cancer are all less likely to access palliative care services.

This view – that are for other people – coupled with society's reluctance to talk about death is a toxic mix. Ultimately, it means that many patients and their families – who could benefit from this extra support for persistent symptoms and other concerns – may not know about palliative care. Or they may be too scared to accept a referral to the in the first place.

So given the fact that the coming years will see a sharp rise in the number of people dying and needing care from their and friends, it's clear we need to start talking about living with serious illness, death, and palliative care, sooner rather than later. Good palliative care is something we should insist on having access to, not something we avoid at all costs – as that cost is far too great.

Explore further: Death may still come as a shock for family carers, research finds

Related Stories

Death may still come as a shock for family carers, research finds

April 17, 2018
Family members who are caring for a dying loved one are often mentally and behaviourally prepared for the death but require support to ensure they are emotionally prepared, new Curtin University research shows.

Earlier palliative care at home linked to fewer hospital admissions

March 2, 2018
Offering palliative care earlier to dying patients at home is linked to fewer hospital admissions at the end of their lives, raising questions about the time restrictions placed on accessing community-based palliative care ...

Early access to palliative care associated with better quality of life

February 1, 2018
Patients with advanced cancer have a significantly better quality of life in the weeks before they die if they receive early access to palliative care, according to research published today.

Provide stroke patients with palliative care support minus the label

March 5, 2018
When caring for stroke patients, health care providers should focus on the social and emotional issues facing patients, rather than only physical rehabilitation, according to a new study published in CMAJ (Canadian Medical ...

At least 42 percent more people will need palliative care in England and Wales by 2040

May 17, 2017
The number of people requiring palliative care over the next 25 years is likely to increase substantially, requiring a shift in healthcare priorities in England and Wales, according to new research published in the open access ...

Most nursing home residents eligible for palliative care but lack access

November 21, 2017
Nearly 70 percent of nursing home residents are eligible for palliative care, but do not receive any corresponding support to provide relief from their symptoms and improve their quality of life, according to a study by researchers ...

Recommended for you

Closing coal, oil power plants leads to healthier babies

May 22, 2018
Shuttering coal- and oil-fired power plants lowers the rate of preterm births in neighboring communities and improves fertility, according to two new University of California, Berkeley, studies.

Insufficient sleep, even without extended wakefulness, leads to performance impairments

May 21, 2018
Millions of individuals obtain insufficient sleep on a daily basis, which can lead to impaired performance and other adverse physiological outcomes. To what extent these impairments are caused by the short sleep duration ...

Avoiding the car for travel could significantly lower risk of illness and death

May 21, 2018
People who are more active when commuting to work by walking or cycling could be cutting their relative risk of developing ischaemic heart disease or stroke by 11% and their relative risk of dying from these diseases by 30%, ...

New study shows higher formaldehyde risk in e-cigarettes than previously thought

May 21, 2018
Portland State University researchers who published an article three years ago in the New England Journal of Medicine about the presence of previously undiscovered forms of formaldehyde in e-cigarette vapor revisited their ...

Sleep better, parent better: Study shows link between maternal sleep and permissive parenting

May 21, 2018
Research has shown that consistently not getting enough sleep, or getting poor quality sleep, can put you at risk for a number of health conditions. But how does sleep, or the lack of it, affect how you parent?

Mediterranean diet may blunt air pollution's ill health effects

May 21, 2018
Eating a Mediterranean diet may protect people from some of the harm of long-term exposure to air pollution, and reduce their risk of dying from heart attacks, stroke and other causes of death, according to new research presented ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.