End of life care

Death Cafe held by nursing students at Dundee university

The end of life needs of people with heart disease aren’t being met. As new guidance is published on the sensitive issue of palliative care, Sarah Brealey explains why we need to talk about death and dying.

Heart disease can be devastating. It can steal loved ones away suddenly, leaving no time to say precious goodbyes. Thanks to our research, more people than ever are surviving a heart attack, but many are left with debilitating heart failure for which there’s currently no cure. 

Palliative care, which focuses on symptom relief while looking at the wider needs of the person and their family, would benefit people with chronic heart failure, says a report by Marie Curie.

Often this isn’t being offered to people with heart failure because of confusion about when referral to palliative care is appropriate, or because it’s not clear when people are approaching death, says the report, which is based on research from the London School of Economics.

It’s equally important for patients and family members to feel able to talk about death and dying

Others with severe strokes, or who have dementia, end stage liver disease or Parkinson’s, are also missing out, while those with cancer are more likely to get specialist palliative care.

Better end of life care requires professionals spending one-to-one time with the patient and their family, and the involvement of professionals from different disciplines, including access to hospices where appropriate.

The Marie Curie report follows a damning report into end of life care from the Parliamentary and Health Services Ombudsman this summer. The report, called Dying without Dignity, said: “We see tragic cases where people’s suffering could have been avoided or lessened with the right care and treatment as they approached the end of their lives.”

Empathy card saying Please let me be the first to punch the next person who tells you everything happens for a reason

The ombudsman report called for the NHS to get better at recognising when people are dying and controlling symptoms including pain; providing services out of hours; and communication with patients, families, and between health professionals.

In July 2015, the National Institute for Health and Care Excellence (NICE) published draft guidelines for end of life care. The consultation is in progress and the final guideline is due to be published in December 2015. 

Talking about death

The NICE guidelines, the Marie Curie report and the ombudsman report all highlight the importance of communication, including more support for professionals talking to patients about their wishes for end of life.

  • Get our free Difficult Conversations booklet, in collaboration with the National Council for Palliative Care, for professionals talking to heart failure patients about end of life.

But it’s equally important for patients and family members to feel able to talk about death and dying.

'I'm sorry I haven't been in touch. I didn't know what to say' card from Emily McDowell studioJon Underwood, from London, set up the Death Café movement, based on a similar concept in Switzerland – public events where people talk about death, usually accompanied by food and drink.

He said: “The aim of Death Café is to raise awareness of death to help people make the most of their finite lives. It is a space for people to talk about where they are at with death, their own feelings and thoughts. People join in for their own reasons, the one thing they have in common is that they want to talk about this.”

Anyone can run a non-profit death café event. So far there have been events around the UK, either held regularly or as one-offs, and even a death café on a canal boat. Jon is currently raising funds through a community share offer to set up a permanent venue in London.

Let’s stop death and dying being the ‘elephant in the room’ and talk about it

It can be hard to find the right words, whether you’re the person with the condition or a friend or family member, and whatever the condition.

Emily McDowell, from Los Angeles, started a range of empathy cards (pictured) inspired by her experience of Hodgkin lymphoma at age 24. She says: “Most of us struggle to find the right words in the face of a friend or loved one’s major health crisis, whether it’s cancer, chronic illness, mental illness, or anything else.”

Her cards feature messages such as “I’m really sorry I haven’t been in touch. I didn’t know what to say.” and “Please let me punch the first person who tells you that everything happens for a reason.”

In the UK, the Dying Matters coalition (of which the BHF is a member), sells sympathy cards with messages including “I don’t know what to say so I might not say much. I just want you to know I’m sorry.” and “We know this is going to be tough but we’re here for you.”

Professionals find it hard too

At the University of Dundee, Lecturer in Nursing Lynn Griffin has been leading the way in educating nursing students about conversations around death and dying, so that they are better prepared to help patients and family members.

Summer third-year students taking part in the Before I die wallShe said: “From my background as a Macmillan nurse I know that people have difficulty discussing death and dying, and this includes healthcare professionals. Students are often protected and excluded from these difficult conversations during their education and feel anxious about having them once they graduate.”

This summer third-year students took part in projects to enhance discussion about death and dying. They set up a “Before I die…” display (pictured here) in which they reflected on what would be important to them in their final months or years, and also organised a death café event (pictured at top of page).

Their training also includes a simulation exercise where a specialist plays the role of a relative of a dying patient, and asks some of the difficult questions nurses might get asked in this situation. Lynn said: “Communication is the key to all good practice, never more so than in end of life care.

“We only have one chance to get it right. Death and dying is something that affects us all in our lifetimes. So let’s stop it being the ‘elephant in the room’ and talk about it.”

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